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The experience of obtaining and retaining work from the perspective of individuals with schizophrenia… Rushton, Nancy Ann 1991

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THE EXPERIENCE OF OBTAINING AND RETAINING WORK THE PERSPECTIVE OF INDIVIDUALS WITH  SCHIZOPHRENIA  A PHENOMENOLOGICAL STUDY by NANCY ANN RUSHTON B.Sc.N., U n i v e r s i t y o f A l b e r t a ,  1978  A THESIS SUBMITTED I N P A R T I A L FULFILLMENT THE REQUIREMENTS FOR THE DEGREE OF MASTER OF SCIENCE I N NURSING in THE FACULTY OF GRADUATE STUDIES The S c h o o l o f N u r s i n g  We a c c e p t t h i s t h e s i s a s c o n f o r m i n g to the required  standard  THE UNIVERSITY OF B R I T I S H COLUMBIA October  1991  (c) N a n c y Ann R u s h t o n ,  1991  OF  In  presenting this  degree at the  thesis in  University of  partial  fulfilment  of  of  department  this thesis for or  by  his  or  requirements  British Columbia, I agree that the  freely available for reference and study. I further copying  the  representatives.  an advanced  Library shall make it  agree that permission for extensive  scholarly purposes may be her  for  It  is  granted  by the  understood  that  head of copying  my or  publication of this thesis for financial gain shall not be allowed without my written permission.  Department  of  'hlayTirM  The University of British Columbia Vancouver, Canada  Date  DE-6 (2/88)  ii Abstract The E x p e r i e n c e  of Obtaining  a n d R e t a i n i n g Work  from t h e P e r s p e c t i v e o f I n d i v i d u a l s w i t h Schizophrenia:  A phenomenological  Study.  The p u r p o s e o f t h i s s t u d y was t o d e s c r i b e t h e e x p e r i e n c e o f o b t a i n i n g and r e t a i n i n g work from t h e p e r s p e c t i v e o f i n d i v i d u a l s w i t h schizophrenia. A phenomenological was u s e d t o g u i d e t h e s t u d y . semi-structured,  audiotaped  D a t a w e r e c o l l e c t e d t h r o u g h 17 i n t e r v i e w s w i t h 6 men a n d 4 women  who h a d b e e n d i a g n o s e d w i t h s c h i z o p h r e n i a . concurrently w i t h t h e data  collection.  accounts included d e s c r i p t i o n s of being with schizophrenia,  occurred  Participants' ill,  of illness,  e m o t i o n a l l y t o t h e work e x p e r i e n c e ,  being  diagnosed  responding  f i n d i n g meaning i n work,  c o p i n g w i t h work and i l l n e s s by c o n t r o l l i n g c e r t a i n  f a c t o r s , using supports, and  Analysis  l o o k i n g f o r work, w o r k i n g day t o day,  working throughout t h e course  and  approach  maintaining  s e l e c t i n g s u i t a b l e work c o n d i t i o n s  optimism.  An o v e r v i e w o f t h e s e  r e v e a l e d t h r e e common t h r e a d s ; long-term  illness.  Viewing  the individual,  schizophrenia.  s o c i a l and  long-term  d i r e c t i o n f o r nurses and o t h e r  h e a l t h p r o f e s s i o n a l s as they provide people with  s o c i e t y and  the p a r t i c i p a n t s ' experience  w i t h i n t h e framework o f t h e i n d i v i d u a l , i l l n e s s contexts provides  experiences  employment g u i d a n c e f o r  iii Table of Contents Abstract Table of Contents  i  Acknowledgments Chapter  1:  Chapter 2:  REVIEW OF SELECTED LITERATURE  Introduction S i g n i f i c a n c e o f Work S i g n i f i c a n c e o f Work f o r t h e General Population S i g n i f i c a n c e o f Work f o r P e o p l e with Mental a Disorder Work a n d S c h i z o p h r e n i a Employment S t a t u s o f I n d i v i d u a l s with Schizophrenia F a c t o r s H i n d e r i n g Employment F a c t o r s F a c i l i t a t i n g Employment R e f e r e n c e t o Work i n t h e E x p e r i e n t i a l Literature F i r s t Person Accounts P r o f e s s i o n a l Accounts  i  i  1  .  1 4 8 8 9 12 12 13 13 15 15 16 16 18 22 22 29 33 39 40 42 47  Summary Chapter 3:  i  v i  INTRODUCTION  Background t o t h e Problem C o n c e p t u a l i z a t i o n o f t h e Problem Problem Statement Purpose . I n t r o d u c t i o n t o t h e Method D e f i n i t i o n o f Terms Assumptions Limitations Summary  i  METHOD  Introduction Selection of Participants Criteria f o r Selection Subject Recruitment Characteristics of Participants Data C o l l e c t i o n and A n a l y s i s E t h i c s a n d Human R i g h t s Summary  48 48 48 50 52 55 58 65 66  iv Chapter  4: THE I N D I V I D U A L S ' ACCOUNTS  68  Introduction The  Accounts The I l l n e s s E x p e r i e n c e B e i n g 111 Being Diagnosed The W o r k - r e l a t e d E x p e r i e n c e L o o k i n g f o r Work W o r k i n g Day t o Day Working Year t o Year R e s p o n d i n g t o t h e Work E x p e r i e n c e F i n d i n g M e a n i n g i n Work The C o p i n g E x p e r i e n c e Controlling Influential Factors U s i n g Support Systems S e l e c t i n g Working C o n d i t i o n s M a i n t a i n i n g Optimism  Summary The The The Chapter  68  Unique I n d i v i d u a l Social Influences Long-term Nature o f t h e I l l n e s s  5: DISCUSSION OF FINDINGS  70 70 70 81 87 87 98 I l l . . . . 114 117 124 125 130 137 144 150 150 154 158 162  Introduction  162  The  162 162 172 176 177 185 191 191  The The  I n d i v i d u a l Context The I n d i v i d u a l E x p e r i e n c e Individualized Intervention S o c i a l Context S o c i a l Stigma Community S u p p o r t Long-term I l l n e s s Context The L o n g - t e r m I l l n e s s E x p e r i e n c e  Summary Chapter  6: SUMMARY, CONCLUSIONS AND FOR NURSING . .  199 IMPLICATIONS  Summary a n d C o n c l u s i o n s . Implications f o r Nursing Practice I m p l i c a t i o n s f o rNursing Research Implications f o rNursing Education  2 03 203 2 09 213 215  V  REFERENCES APPENDICES Appendix Appendix Appendix Appendix Appendix  218 A B C D E  -  L e t t e r of Introduction Consent f o r Telephone Contact I n f o r m e d C o n s e n t Form Demographic Data Sheet Interview Guide  234 2 34 23 6 .237 239 240  vi Acknowledgments I w o u l d l i k e t o t h a n k e a c h o f t h e men a n d women who p a r t i c i p a t e d i n t h i s study, f o r generously g i v i n g t h e i r time and c a n d i d l y s h a r i n g t h e i r t h o u g h t s and f e e l i n g s . I a p p r e c i a t e t h e i r humor, h o p e a n d c o u r a g e , a n d t h e warm f r i e n d s h i p t h e y e x t e n d e d t o me. I would a l s o l i k e t o thank t h e many p e o p l e i n t h e commmunity who e n t h u s i a s t i c a l l y s u p p o r t e d a n d a s s i s t e d me i n p a r t i c i p a n t s e l e c t i o n . I am g r a t e f u l t o my t h e s i s c o m m i t t e , S a l l y T h o m e a n d J u d y Lynam, f o r s h a r i n g t h e i r w e a l t h o f k n o w l e d g e a n d experience. I w o u l d l i k e t o t h a n k them f o r t h e i r k i n d n e s s , f r i e n d s h i p and support. I am i n d e b t e d t o J a n e t E r i c k s e n f o r g o i n g t h e e x t r a m i l e a n d h e l p i n g me t o c o m p l e t e t h i s s t u d y u n d e r d i f f i c u l t t i m e constraints. To my f r i e n d s a n d c o l l e a g u e s a t V a n c o u v e r G e n e r a l H o s p i t a l S c h o o l o f N u r s i n g , I w o u l d l i k e t o e x t e n d my d e e p a p p r e c i a t i o n f o r t h e i r u n f a i l i n g encouragement. F i n a l l y , I w o u l d l i k e t o t h a n k my f a m i l y a n d G l e n a n d D o r a M i l l e r f o r t h e i r l o v e , u n d e r s t a n d i n g , a n d h e l p . To my d a u g h t e r Meghan, I w o u l d l i k e t o e x p r e s s my l o v e a n d s a y "thank-you f o r w a i t i n g . "  1 Chapter 1 Introduction Background t o t h e Problem Because of improved treatment  and i n c r e a s e d a t t e n t i o n t o  human r i g h t s , m o s t i n d i v i d u a l s w i t h s c h i z o p h r e n i a now  live in  communities r a t h e r than p s y c h i a t r i c h o s p i t a l s (Boker & Brenner, 1987).  T h i s has r e s u l t e d i n t h e need f o r i n c r e a s e d  f o c u s on t h e m e n t a l h e a l t h o f t h e i n d i v i d u a l community.  i n the  Work p l a y s a n i n t e g r a l r o l e i n t h e m e n t a l h e a l t h  o f i n d i v i d u a l s w i t h s c h i z o p h r e n i a and t h u s d e s e r v e s p a r t i c u l a r a t t e n t i o n (Westermeyer & Harrow, 1987). researchers  have s t u d i e d v a r i o u s aspects  While  o f work i n r e l a t i o n  t o i n d i v i d u a l s w i t h s c h i z o p h r e n i a , t h e a c t u a l work experiences  of these  i n d i v i d u a l s have n o t been s t u d i e d .  particular,  no r e s e a r c h h a s d e s c r i b e d t h e e x p e r i e n c e  In  of  o b t a i n i n g and r e t a i n i n g work f r o m t h e p e r s p e c t i v e o f  these  individuals. Schizophrenia  i s a m e n t a l d i s o r d e r o f unknown e t i o l o g y ,  which r e s u l t s i n e p i s o d i c f e a t u r e s such as d e l u s i o n s , hallucinations, disturbances such as withdrawal and  o f f e e l i n g , p h y s i c a l symptoms  a n d s l o w n e s s o f movement, a n d b e h a v i o r a l  p e r s o n a l i t y changes ( J e f f r i e s ,  Thornton, 1990).  Plummer,  Seeman &  These f e a t u r e s i n f l u e n c e t h e e x p e r i e n c e  o b t a i n i n g and r e t a i n i n g work as t h e y  can a f f e c t the  i n d i v i d u a l ' s a b i l i t y t o concentrate,  f o l l o w through  tasks,  interact cooperatively with others  and so on.  of  with I t has  2 been e s t i m a t e d population,  t h a t t w e n t y m i l l i o n i n d i v i d u a l s , o r 1% o f t h e  a r e a f f e c t e d by s c h i z o p h r e n i a  (Hoffman,  I n C a n a d a t h a t t r a n s l a t e s i n t o more t h a n 50,000 with  schizophrenia  these individuals significance  1988).  individuals  ( B e i s e r & Iacono, 1990). Two-thirds o f l i v e i n t h e community, t h u s t h e  of schizophrenia  as a h e a l t h problem i s c l e a r ,  e s p e c i a l l y t o h e a l t h p r o f e s s i o n a l s who w o r k i n t h e c o m m u n i t y . Health not  care  f o r individuals with  schizophrenia  involves  only t h e treatment of t h e mental disorder, but a l s o  promotion of mental health  (Beatty,  1988).  mental h e a l t h involves p r o v i s i o n of care threaten  mental health.  Promotion of  i n t h e areas  Many i n d i v i d u a l s w i t h  that  schizophrenia  have p r o b l e m s i n o b t a i n i n g and r e t a i n i n g work, t h u s work i s a factor that threatens  t h e i r mental h e a l t h  S i l v e r s t e i n & Holzman, 1978). work p l a y s  (Harrow,  Grinker,  While i ti s recognized  that  a s i g n i f i c a n t r o l e i n t h e mental h e a l t h of  individuals with  schizophrenia,  has n o t been g i v e n  work f o r t h e s e  individuals  a s much a t t e n t i o n a s i t d e s e r v e s  (Westermeyer and Harrow, 1987).  Most r e s e a r c h e r s  have  s t u d i e d t h e m e n t a l d i s o r d e r , t h a t i s , t h e c o u r s e and treatment of the schizophrenic have s t u d i e d these,  disorder.  Fewer  researchers  f a c t o r s r e l a t i v e t o m e n t a l h e a l t h a n d , among  a f o c u s on work e x p e r i e n c e i s m i n i m a l .  community m e n t a l h e a l t h n u r s e s p r o v i d e individuals with schizophrenia  care  Nonetheless,  f o r thousands of  who a t t e m p t t o o b t a i n a n d  r e t a i n work i n t h e community and e n c o u n t e r p r o b l e m s i n d o i n g  3 so.  The t y p e o f r e s e a r c h t h a t h a s b e e n d o n e i n r e l a t i o n t o  work p r o v i d e s l i t t l e n u r s e who  guidance  f o r t h e community m e n t a l h e a l t h  i s providing care f o r i n d i v i d u a l s i n these  situations. I t has been t h i s r e s e a r c h e r ' s e x p e r i e n c e , d u r i n g s e v e r a l years of nursing practice, that individuals s c h i z o p h r e n i a e x p r e s s many c o n c e r n s o b t a i n i n g and r e t a i n i n g work. experience  with  about t h e experience  of  The d e s i r e t o s t u d y t h e  o f o b t a i n i n g and r e t a i n i n g work from t h e  p e r s p e c t i v e o f i n d i v i d u a l s i s r e i n f o r c e d by t h i s  researcher's  awareness of t h e l a c k of r e f e r e n c e t o t h e i n d i v i d u a l ' s perspective i n the p r o v i s i o n of nursing care.  Nurses's don't  know w h a t t h e i n d i v i d u a l ' s p e r c e p t i o n s a r e , a n d t h e r e f o r e a r e unable  t o i n c o r p o r a t e t h i s knowledge i n n u r s i n g c a r e .  Understanding  the experience  o f o b t a i n i n g and r e t a i n i n g  work  i s s i g n i f i c a n t t o the p r o v i s i o n of e f f e c t i v e nursing care f o r these  i n d i v i d u a l s f o r a number o f r e a s o n s .  of the person's  experience  skills  as they  work  1) t e a c h  f o r o b t a i n i n g a n d r e t a i n i n g w o r k , 2) p r o v i d e  e m p a t h i c s u p p o r t t o i n d i v i d u a l s who difficulty  understanding  i n o b t a i n i n g and r e t a i n i n g  c o u l d p r o v i d e v a l u a b l e knowledge t o nurses people  An  are encountering  i n o b t a i n i n g a n d r e t a i n i n g w o r k , 3) f u n c t i o n a s  the i n d i v i d u a l ' s advocate  i n t h e work p l a c e ,  4) t e a c h  provide support t o f a m i l i e s which are having d i f f i c u l t y understanding  and in  w h a t t h e i n d i v i d u a l i s e x p e r i e n c i n g , 5) w o r k  w i t h o t h e r members o f t h e h e a l t h c a r e t e a m i n d e v e l o p i n g  4 community s u p p o r t programs such as j o b - f i n d i n g c l u b s employment programs and,  6) c o m m u n i c a t e w i t h o t h e r  o f t h e h e a l t h c a r e team about t h e e x p e r i e n c e s individuals with schizophrenia  D i r e c t i o n f o r t h i s study  of the  members  that  have i n community  Conceptualization  or  living.  Problem  comes f r o m t h e  c o n c e p t u a l i z a t i o n o f m e n t a l h e a l t h and m e n t a l d i s o r d e r described  i n t h e 1988  S t r i k i n g a Balance. defined  document M e n t a l H e a l t h  as  f o r Canadians:  I n t h a t document m e n t a l h e a l t h i s  a s t h e c a p a c i t y o f t h e i n d i v i d u a l , t h e g r o u p and  the  e n v i r o n m e n t t o i n t e r a c t w i t h one a n o t h e r i n w a y s t h a t p r o m o t e subjective well-being, the optimal  development  m e n t a l a b i l i t i e s , and t h e a c h i e v e m e n t with  j u s t i c e and e q u a l i t y .  as a continuum health.  of goals  consistent  from minimal mental h e a l t h t o o p t i m a l  W i t h i n t h i s framework,  schizophrenia medically  that r e s u l t s i n the s i g n i f i c a n t  1988,  p.8).  a  diagnosable  impairment of  an  abilities  A c r u c i a l p o i n t o f t h e framework  t h a t a m e n t a l d i s o r d e r such as s c h i z o p h r e n i a ,  is  e v e n when  s e r i o u s and c h r o n i c , i s n e v e r t h e o n l y f a c t o r mental health.  mental  i s considered  i n d i v i d u a l ' s cognitive, a f f e c t i v e or r e l a t i o n a l (Beatty,  of  Mental health i s conceptualized  mental disorder or a recognized, illness  and use  determining  T h a t i s , e v e n when t h e symptoms o f t h e  d i s o r d e r a r e c o n t r o l l e d and t h e i n d i v i d u a l i s a b l e t o l i v e i n the will  c o m m u n i t y , i t d o e s n o t n e c e s s a r i l y mean t h e have a c h i e v e d  individual  optimal mental h e a l t h . Other f a c t o r s p l a y  5 a part It  i n determining  t h e mental h e a l t h of t h e i n d i v i d u a l .  i s p o s s i b l e f o r t h e i n d i v i d u a l t o have poor mental  because o f t h e f o l l o w i n g o b s t a c l e s :  health  " r e j e c t i o n by f r i e n d s ,  f a m i l y o r workmates, t h e stigma o f mental i l l n e s s ,  inability  t o f i n d o r keep s u i t a b l e employment, l a c k o f a p p r o p r i a t e  and  a f f o r d a b l e h o u s i n g , l a c k o f s o c i a l and r e c r e a t i o n a l o r educational  o p p o r t u n i t i e s , e x p e r i e n c e s o f d i s c r i m i n a t i o n , and  l a c k o f needed i n f o r m a t i o n (Beatty,  and c o p i n g  skills"  1988, p . 9 ) . I n t h i s c o n c e p t u a l  individuals with  schizophrenia  framework,  h a v e t h e same r a n g e o f m e n t a l  h e a l t h needs and a s p i r a t i o n s as anyone e l s e , and t h e d e s i r e f o r achieving mental health This  conceptual  i s t h e same a s f o r e v e r y o n e e l s e .  f r a m e w o r k d i r e c t s one t o c o n s i d e r t h e  mental h e a l t h of i n d i v i d u a l s with schizophrenia explore  the obstacles  of t h e i r optimal obstacle,  t h a t may be a f f e c t i n g t h e a c h i e v e m e n t  mental health.  the i n a b i l i t y to find  researching  and t o  This  s t u d y a d d r e s s e s one  o r keep s u i t a b l e work, by  t h e e x p e r i e n c e t h a t i n d i v i d u a l s have i n r e l a t i o n  t o o b t a i n i n g and r e t a i n i n g work. Direction f o r studying  individuals  from t h e t h e o r e t i c a l p e r s p e c t i v e (1978) a n d studying  Kleinman  (1978).  human e x p e r i e n c e ,  1  e x p e r i e n c e comes  of scholars  such as C o l a i z z i  When d i s c u s s i n g t h e v a l u e o f  C o l a i z z i writes, "experience i s :  (a) o b j e c t i v e l y r e a l f o r m y s e l f a n d o t h e r s ,  (b) n o t a n  i n t e r n a l s t a t e b u t a mode o f p r e s e n c e t o t h e w o r l d , mode o f w o r l d  presence that i s e x i s t e n t i a l l y  (c) a  s i g n i f i c a n t , and  6  (d) a s e x i s t e n t i a l l y s i g n i f i c a n t , necessary While  c o n t e n t f o r u n d e r s t a n d i n g human p s y c h o l o g y "  (p.52).  i t i s i m p o r t a n t t o s t u d y human e x p e r i e n c e , i t i s  necessary, has  i t i s a l e g i t i m a t e and  as Kleinman  a different  (1989) w r i t e s :  p o i n t s o u t , t o remember t h a t e v e r y o n e  p e r s p e c t i v e o n *human e x p e r i e n c e ' .  " t h e w o r l d and r e a l i t y , and e v e r y t h i n g t h a t i s  important  i n t h e w o r l d , c h a n g e s when we s e e i t f r o m  different  p e r s p e c t i v e " (p.34).  According t o Kleinman, h e a l t h care workers in individuals'  Kleinman  i ti s particularly  a  important f o r  t o acknowledge t h a t t h e r e a r e d i f f e r e n c e s  perspectives of r e a l i t y .  h e a l t h care systems c o n t a i n t h r e e s o c i a l sickness i s experienced.  He t h e o r i z e s t h a t sectors within  which  These a r e t h e p o p u l a r s e c t o r ,  c o m p r i s i n g t h e f a m i l y c o n t e x t o f s i c k n e s s and c a r e , t h e p r o f e s s i o n a l s e c t o r and t h e f o l k s e c t o r . t h e h e a l t h c a r e system, elicited  e x p l a n a t o r y models  " I n each s e c t o r o f (EMs) c a n be  f r o m p r a c t i c i o n e r s , p a t i e n t s , a n d f a m i l y members f o r  particular different  sickness epidodes"  (p.87).  EMs c o n s t r u c t  r e a l i t i e s f o r t h e same s i c k n e s s e p i s o d e .  For  e x a m p l e p r o f e s s i o n a l m e d i c a l EMs c o n s t r u e s i c k n e s s a s disease, that i s a malfunctioning i n or maladaptation of biological  and/or p s y c h o l o g i c a l processes, w h i l e  popular  c u l t u r e EMs c o n s t r u e s i c k n e s s a s i l l n e s s t h a t i s t h e e x p e r i e n c e o f d i s e a s e and t h e s o c i e t a l F o r most c l i e n t s t h e n , his  reaction t o disease.  " i l l n e s s i s t h e way t h e s i c k  f a m i l y , and h i s s o c i a l network p e r c e i v e , l a b e l , i  person, explain,  7 valuate,  and r e s p o n d t o d i s e a s e "  (p.88),  while  h e a l t h p r o f e s s i o n a l s i l l n e s s i s more n a r r o w l y I n summary, w h a t K l e i n m a n i s s a y i n g  f o r most defined.  i s that health  p r o f e s s i o n a l s and c l i e n t s b e l o n g t o d i f f e r e n t c u l t u r a l s o c i a l systems, each system w i t h meanings and b e h a v i o r a l  norms.  As a r e s u l t o f t h e s e  c l i e n t s u n d e r s t a n d and e x p l a i n r e a l i t y  professionals  i n d i f f e r e n t ways.  T r a d i t i o n a l l y , h e a l t h c a r e p r o f e s s i o n a l s have care  and  i t s own s e t o f s o c i a l  d i f f e r e n c e s i n meaning and norms, h e a l t h c a r e and  care  provided  b a s e d o n t h e i r own u n d e r s t a n d i n g a n d e x p l a n a t i o n  of  r e a l i t y r a t h e r t h a n t h e c l i e n t ' s u n d e r s t a n d i n g and explanation increased  of r e a l i t y .  This  s t u d y a d d r e s s e s t h e need f o r  a t t e n t i o n t o t h e c l i e n t ' s p o i n t o f v i e w by  on t h e i n d i v i d u a l ' s p e r s p e c t i v e o b t a i n i n g and r e t a i n i n g work. nursings'  focusing  of the experience of This  i s i n keeping  with  r e c o g n i t i o n t h a t d e f i n i n g p r o b l e m s and p r e s c r i b i n g  s o l u t i o n s which are congruent with the c l i e n t ' s p o i n t of view increases  nursings'  (Anderson, 1985). literature,  responsiveness to the c l i e n t s ' s I t has been i d e n t i f i e d  that nursing  in  nursing  needs t o d e v e l o p an u n d e r s t a n d i n g o f  the meanings t h a t i n d i v i d u a l s a s s i g n t o l i f e  events.  the p r a c t i c i o n e r understands c l i e n t s ' perspectives, the meaning they a s s i g n t o l i f e nursing  practice,  i s intended  t o provide  When including  events, the e f f e c t i v e n e s s of  i n t e r v e n t i o n s i s enhanced.  research  needs  Therefore,  i f nursing  quidance t o c l i n i c a l  i t must seek t o u n d e r s t a n d i n d i v i d u a l s '  8 perspectives.  (Lynam a n d A n d e r s o n , 1986 p . 2 6 1 ) .  h e a l t h p r o f e s s i o n a l s , p a r t i c u l a r l y nurses,  I n summary,  are recognizing  t h a t t h e g r e a t e r t h e l e v e l o f p r o f e s s i o n a l awareness o f t h e c l i e n t ' s understanding  and e x p l a n a t i o n  of r e a l i t y , the  greater the p o s s i b i l i t y of providing care that i s e f f e c t i v e and  i s s a t i s f y i n g f o r t h e c l i e n t as w e l l as f o r t h e  professional. Problem  Statement  I n summary, w h i l e o b t a i n i n g a n d r e t a i n i n g w o r k i s a n important  p a r t o f o p t i m a l m e n t a l h e a l t h , no r e s e a r c h  found w h i c h documents t h i s e x p e r i e n c e individuals with schizophrenia.  from t h e p e r s p e c t i v e of  Nurses provide  community t o t h o u s a n d s o f i n d i v i d u a l s w i t h many o f whom h a v e d i f f i c u l t y I f nurses are t o provide  c a n be  care  i n the  schizophrenia,  o b t a i n i n g and r e t a i n i n g work.  emotional  i n d i v i d u a l s , t e a c h and c o u n s e l  support  and advocacy f o r  f a m i l i e s and employers, and  plan care with other health p r o f e s s i o n a l s , i t i se s s e n t i a l that they understand the experience  o f o b t a i n i n g and  r e t a i n i n g work from t h e p e r s p e c t i v e o f t h e s e  clients.  Purpose The  purpose of t h i s study,  experience  then,  was t o d e s c r i b e t h e  o f o b t a i n i n g and r e t a i n i n g work from t h e  perspective of i n d i v i d u a l s with schizophrenia. d e s c r i p t i o n s of the experience work were e l i c i t e d research  questions:  Verbal  o f o b t a i n i n g and r e t a i n i n g  i n o r d e r t o answer t h e f o l l o w i n g two  9 1)  What a r e t h e e x p e r i e n c e s  s u r r o u n d i n g o b t a i n i n g and  r e t e n t i o n o f work from t h e p e r s p e c t i v e o f i n d i v i d u a l s  with  s c h i z o p h r e n i a ? ; and 2)  What m e a n i n g do t h e e x p e r i e n c e s  o f o b t a i n i n g and  r e t a i n i n g work have f o r i n d i v i d u a l s w i t h  schizophrenia?  I n t r o d u c t i o n t o t h e Method F o r each r e s e a r c h q u e s t i o n t h e r e i s a method t h a t i s most a p p r o p r i a t e , and s e l e c t i n g t h a t method i s one o f t h e most i m p o r t a n t d e c i s i o n s o f t h e r e s e a r c h p r o c e s s Morse, 1985).  (Field &  I n a s much a s t h e a i m o f t h i s s t u d y was t o  d e s c r i b e , f r o m t h e i r own p e r s p e c t i v e , t h e e x p e r i e n c e s o f i n d i v i d u a l s w i t h s c h i z o p h r e n i a , i t was n e c e s s a r y  to select a  m e t h o d t h a t was a p p r o p r i a t e f o r i n v e s t i g a t i n g human experience.  The t r a d i t i o n a l r e s e a r c h m e t h o d , t h a t o f  e x p e r i m e n t a t i o n , w i t h i t s n o t i o n o f o b j e c t i v i t y and use o f operational definitions,  e x c l u d e s human e x p e r i e n c e  (Colaizzi,  1978) . T h i s i m p l i e s t h a t t h e method f o r t h e o b j e c t i v e i n v e s t i g a t i o n o f human e x p e r i e n c e method.  I t must be a method w h i c h n e i t h e r d e n i e s  nor d e n i g r a t e s i t o r transforms behavior;  experience  i t into operationally defined  i t must be, i n s h o r t , a method t h a t r e m a i n s w i t h  human e x p e r i e n c e  as i t i s experienced,one  sustain contact with experience 1978,  c a n n o t be t h e e x p e r i m e n t a l  p.53).  which t r i e s t o  as i ti s g i v e n  (Colaizzi,  I n o t h e r w o r d s , t h e more f a m i l i a r q u a n t i t a t i v e  methods a r e i n a p p r o p r i a t e f o r a n s w e r i n g  t h e q u e s t i o n p o s e d by  t h i s study.  The  method t h a t C o l a i z z i s u g g e s t s  a c h i e v e t h e s t u d y o f human e x p e r i e n c e i s t h e  can  best  phenomenological  method. What t h e n ,  i s phenomenology?  A s Omery (1983) e x p l a i n s ,  phenomenology i s n o t j u s t a r e s e a r c h method b u t i s a l s o a p h i l o s o p h y and  an a p p r o a c h .  "The  phenomenological  movement  has  g r o w n l a r g e l y o u t o f t h e p h i l o s o p h y o f Edmund H u s s e r l ,  and  l a t e r A l f r e d S c h u t z , who  phenomenological everyday Elfert  life  1989,  e l u c i d a t e d t h e ways i n w h i c h  p h i l o s o p h y d i r e c t s us i n t h e s t u d y  and  everyday  p.737).  The  p h i l o s o p h e r s , Heidegger,  human i n t e r a c t i o n " work o f t h e  of  (Anderson  and  existential  S c h u l e r , S a r t r e and  Merleau-Ponty  a l s o p r o v i d e d t h e f o u n d a t i o n f o r t h e p h e n o m e m o l o g i c a l method ( F i e l d and Morse, 1985). it  Phenomenology a c c e p t s e x p e r i e n c e  e x i s t s i n the i n d i v i d u a l ' s consciousness.  There are  no  p r e c o n c e i v e d n o t i o n s , e x p e c t a t i o n s or frameworks p r e s e n t g u i d e r e s e a r c h e r s as t h e y b e g i n t o a n a l y z e t h e d a t a . goal i s t o a c c u r a t e l y describe the experience of phenomenon u n d e r s t u d y and n o t t o g e n e r a t e nor t o develop  as  to  The  the  t h e o r i e s or models  e x p l a n a t i o n s o f t h e phenomenon ( F i e l d  and  M o r s e , 1985) . The  phenomenological  method, t h e n ,  i s an  inductive,  d e s c r i p t i v e r e s e a r c h method w i t h t h e aim o f i n v e s t i g a t i n g d e s c r i b i n g a l l phenomena, i n c l u d i n g t h e i r f u l l e s t b r e a d t h and d e p t h , meaning, essence  and  and  human e x p e r i e n c e s i n  along with t h e i r s u b j e c t i v e  relationships  (Omery, 1983;  Watson,  1985).  I t i s i m p o r t a n t t o n o t e t h e t h e a i m o f phenomenology  i s t o describe experience r a t h e r than t o d e f i n e , c a t e g o r i z e , e x p l a i n o r i n t e r p r e t i t (Munhall & O i l e r , From t h e a b o v e d e s c r i p t i o n , phenomenology experience.  1986).  i t i sclear  that  i s a m e t h o d o f c h o i c e f o r t h e s t u d y o f human B e c a u s e t h e a i m o f t h i s s t u d y was t o d e s c r i b e  e x p e r i e n c e a n d i t s a s s o c i a t e d m e a n i n g , p h e n o m e n o l o g y was c h o s e n a s t h e a p p r o p r i a t e method f o r t h e s t u d y .  This  method  was c o n s i d e r e d p a r t i c u l a r l y u s e f u l a s i t a l l o w s f o r a g r e a t e r depth  of understanding  methods o f r e s e a r c h  than i s usual i n t h e t r a d i t i o n a l  (Rist,  1979).  e x p e r i e n c e must be a r t i c u l a t e d  This understanding of  i n t h e form o f a  coherent  d e s c r i p t i o n i n o r d e r f o r i t t o c o n t r i b u t e t o a body o f knowledge f o r n u r s i n g (Munhall & O i l e r ,  1986) .  As i s e v i d e n t from t h e above d e s c r i p t i o n ,  this  o r i e n t a t i o n t o r e s e a r c h i s i n c o n t r a s t t o t h e more t r a d i t i o n a l approaches which, hypotheses from  and i n which  f o r example, aim t o v e r i f y  concepts  and c a t e g o r i e s a r e d e r i v e d  a p r e - e x i s t i n g t h e o r e t i c a l framework (Anderson,  T h e r e a r e many d i f f e r e n c e s i n t h e d e s i g n o f a  phenomenolgical  s t u d y a s compared t o a t r a d i t i o n a l q u a n t i t a t i t v e These d i f f e r e n c e s i n d e s i g n w i l l as t h e  1981).  studies.  be i l l u m i n a t e d i n c h a p t e r 3  s u b j e c t r e c r u i t m e n t , d a t a c o l l e c t i o n and a n a l y s i s a r e  described.  12 D e f i n i t i o n o f Terms C e r t a i n key terms are used throughout t h e d i s c u s s i o n are d e f i n e d here f o r the purpose of "Schizophrenia"  and  clarification.  i s a term r e f e r r i n g t o a mental  o f unknown e t i o l o g y w h i c h shows i t s e l f  disorder  t h r o u g h a number o f  main f e a t u r e s , i n c l u d i n g d e l u s i o n s , h a l l u c i n a t i o n s , disturbances  o f f e e l i n g , p h y s i c a l symptoms a n d a  break i n the i n d i v i d u a l ' s l i f e .  The d i s o r d e r o c c u r s i n b o t h  s e x e s a n d commonly makes i t s f i r s t individual  i n his\her twenties  distinct  appearance  i n the  a l t h o u g h i t can appear  e a r l y a d o l e s c e n c e and as l a t e as t h e e a r l y ( J e f f e r i e s , Plummer, Seeman, & T h o r n t o n  as  thirties  1990).  "Work" r e f e r s t o t h e a c t s t h a t one d o e s i n r e t u r n f o r something of value,  s u c h a s money; t h e a c t i v i t i e s b y  one e a r n s o n e ' s l i v e l i h o o d "Experience"  (Landau,  1980).  r e f e r s t o a c t u a l l y l i v i n g t h r o u g h an  event; personally undergoing or observing things  i n general  which  some t h i n g o r  as t h e y o c c u r ( F r i e n d & G u r a l n i k ,  1958).  Assumptions The  researcher  approached  that the information accurate  t h i s study with the  assumption  s h a r e d by t h e p a r t i c i p a n t s w o u l d be  and t r u t h f u l r e p o r t i n g o f t h e i r p e r c e p t i o n  experience.  Further,  the researcher  assumed t h a t  an  of the  the  e x p e r i e n c e o f o b t a i n i n g and r e t a i n i n g work c a r r i e d w i t h i t some common o r s h a r e d m e a n i n g t h a t c o u l d be r e l a y e d others.  to  Limitations The  w i l l i n g n e s s of the p a r t i c i p a n t s t o r e p o r t i n d e t a i l  to the researcher  l i m i t s t h e e x t e n t o f t h e d a t a and  a n a l y t i c a l outcome.  Another l i m i t a t i o n i s t h a t  p a r t i c i p a n t s a r e t h o s e w i l l i n g and experiences  so t h e e x p e r i e n c e s  apply to the c u l t u r a l  own  and  As w e l l ,  the  a d i s t i n c t sub-group of i n d i v i d u a l s w i t h  s c h i z o p h r e n i a as t h e sample c o n s i s t s o f t h o s e a r e c o h e r e n t and  the  able to describe t h e i r  s o c i a l system t o which the p a r t i c i p a n t s belong. sample r e p r e s e n t s  the  i n d i v i d u a l s who  articulate. Summary  This chapter  has  presented  a d e s c r i p t i o n of  the  background t o the problem, the c o n c e p t u a l i z a t i o n of p r o b l e m , a s w e l l a s t h e p r o b l e m s t a t e m e n t and the  study.  A l s o p r o v i d e d was  p h e n o m e n o l o g i c a l m e t h o d and t h i s method f o r t h i s The  high  l a c k of cure  a brief  the  the purpose  introduction to  the  the r a t i o n a l e f o r s e l e c t i o n of  study.  i n c i d e n c e o f s c h i z o p h r e n i a , compounded w i t h f o r t h e d i s o r d e r , has  W h i l e work has  the  r e s u l t e d i n l a r g e numbers  of people w i t h schizophrenia r e q u i r i n g supportive care community.  of  been i d e n t i f i e d as a  i n the  significant  v a r i a b l e a f f e c t i n g the mental h e a l t h of i n d i v i d u a l s w i t h s c h i z o p h r e n i a , and  while various aspects  o f work have been  s t u d i e d i n r e l a t i o n t o p e o p l e w i t h s c h i z o p h r e n i a , no has  examined the experience  o f o b t a i n i n g and  from the p e r s p e c t i v e of i n d i v i d u a l s w i t h  research  r e t a i n i n g work  schizophrenia.  B e c a u s e o f i t s u n i q u e f o c u s on e x p e r i e n c e perspective of the individual,  from t h e  p h e n o m e n o l o g y was s e l e c t e d  t h e a p p r o p r i a t e method t o answer t h e r e s e a r c h  question.  15 Chapter 2 Review of S e l e c t e d L i t e r a t u r e Introduction The  l i t e r a t u r e reviewed  i s t h a t which p e r t a i n s to  i n d i v i d u a l s w i t h m e n t a l d i s o r d e r s and,  particularly,  to  i n d i v i d u a l s with schizophrenia. Currently f i v e types  of  s c h i z o p h r e n i a a r e s p e c i f i e d i n t h e D i a g n o s t i c and Manual of Mental D i s o r d e r s ( A P A ) , 1987)  Each type  p r e d o m i n a n t symptoms.  (American P s y c h i a t r i c A s s o c i a t i o n  i s c h a r a c t e r i z e d by a s e t As w e l l , t h e c o u r s e  v a r i e s from c l i e n t t o c l i e n t , f i v e courses  Statistical  of the d i s o r d e r .  and  of  of the  t h u s t h e APA  disorder  has  Most l i t e r a t u r e ,  specified  however,  makes no m e n t i o n o f t h e d i a g n o s t i c c r i t e r i a u s e d o r t h e of schizophrenia t o which i t r e f e r s .  Thus t h e  p e r t a i n s to i n d i v i d u a l s with d i f f e r e n t types  way.  l i t e r a t u r e review  First,  criteria.  i s categorized i n the f o l l o w i n g  l i t e r a t u r e addressing  mental health i s discussed.  t h e s i g n i f i c a n c e o f work t o  This area of l i t e r a t u r e  d i s c u s s e d because i t provides v a r i a b l e of work.  literature  of  schizophrenia, diagnosed with varying sets of The  type  is  a r a t i o n a l e f o r examining  Second, l i t e r a t u r e a d d r e s s i n g  the  the  current  knowledge about work as r e l a t e d t o i n d i v i d u a l s w i t h schizophrenia  i s discussed.  This discussion provides  an  understanding  o f w h a t k n o w l e d g e i s a l r e a d y a v a i l a b l e and  where t h e gaps i n knowledge e x i s t i n r e l a t i o n t o work experiences  of i n d i v i d u a l s w i t h s c h i z o p h r e n i a .  The  third  area of l i t e r a t u r e addressed experience  i s t h a t which p e r t a i n s t o the  o f mental i l l n e s s as d e s c r i b e d from t h e  perspective of i n d i v i d u a l s w i t h mental d i s o r d e r s . o f l i t e r a t u r e p r o v i d e s an u n d e r s t a n d i n g k n o w l e d g e r e l a t e d t o how m e n t a l l y i l l p e r c i e v e t h e i r own e x p e r i e n c e s and  T h i s body  o f t h e gaps i n t h e  individuals  actually  i n r e l a t i o n t o mental h e a l t h  illness. S i g n i f i c a n c e o f Work  S i g n i f i c a n c e o f Work f o r t h e G e n e r a l  Population  A l a r g e body o f l i t e r a t u r e a d d r e s s e s  the significance of  work t o t h e m e n t a l h e a l t h o f i n d i v i d u a l s . w r i t e about t h e s i g n i f i c a n c e o f work.  Many  theorists  As Morgan  (1983)  r e m i n d s u s , " t h e h e a l t h - g i v i n g p r o p e r t i e s o f work have been r e c o g n i z e d s i n c e a s l o n g ago a s H i p p o c r a t e s  and Galen...but  i t s v a l u e h a s h a d t o be r e d i s c o v e r e d a g a i n a n d a g a i n b y pioneers  l i k e V a r v i e r - J o n e s a n d Woodhead (1918) i n t h e c a r e  of the p h y s i c a l l y i l l Gutersloh  and John C o n o l l y  (1847) a n d S i m o n o f  (1927) i n t h e c a r e o f t h e m e n t a l l y i l l "  (p.151).  W e s t e r m e y e r a n d H a r r o w (1987) w r i t e t h a t : T h e o r i s t s from Freud  t o Marx have g i v e n work a c e n t r a l  p l a c e i n human d e v e l o p m e n t .  I n s t r u m e n t a l work  performance can o f f e r t o i n d i v i d u a l s economic sufficiency,  self-  s o c i a l s t a t u s , and t h e o p p o r t u n i t y t o  interact with others.  Work a l s o i n v o l v e s a g r e a t  p r o p o r t i o n of t h e time  i n people's  lives.  can p r o v i d e a framework f o r o r g a n i z i n g t i m e  As such, i t across  17 human l i f e  c y c l e s , f o r g i v i n g s t r u c t u r e and meaning t o  t h e d a y s , weeks and y e a r s o f p e o p l e ' s l i v e s Work p l a y s a number o f i m p o r t a n t and,  r o l e s i n human  as a c e n t r a l element o f a d u l t l i f e ,  s t r u c t u r e f o r s o c i a l behavior  (Jacobs,  (p.280). behavior  i t provides  1988).  I n most  c u l t u r e s , work a c t i v i t i e s p l a y a s i g n i f i c a n t r o l e i n determining 1961).  s t a t u s among g r o u p members ( W e i s s & R e i s m a n ,  Hewitt  (1949) s u g g e s t s t h a t w o r k i s a n e s s e n t i a l  ingredient of healthy are deprived important  o f work.  life,  and t h a t p e o p l e s u f f e r i f t h e y  He a r g u e s t h a t w o r k i s p a r t i c u l a r l y  f o r d i s a b l e d p e o p l e as t h r o u g h work t h e y c a n  experience  a marked improvement i n t h e i r p h y s i c a l and m e n t a l  condition.  The i m p a c t o f l o n g - t e r m u n e m p l o y m e n t was s i m i l a r  in  t h e 1 9 3 0 ' s a n d 1 9 7 0 ' s , s h a r i n g t h e same f e a t u r e s o f  boredom, d e c l i n i n g s e l f - r e s p e c t and a p a t h e t i c r e s i g n a t i o n (Jahoda, 1979).  Jahoda's examination o f t h e e f f e c t s o f  unemployment u n d e r s c o r e s t h e i m p o r t a n c e o f work f o r s t r u c t u r i n g time, experiences,  enforcing activity, providing  l i n k i n g t h e i n d i v i d u a l t o e x t e r n a l g o a l s and  conferring personal the  s t a t u s and i d e n t i t y .  e f f e c t s o f unemployment d u r i n g  increases other  O t h e r s t u d i e s on  economic downturns note  i n t h e i n c i d e n c e o f p h y s i c a l and m e n t a l i l l n e s s and  distress following job loss  J a c k s o n , 1981; Dooley & Catalano, Aring  shared  (Catalano,  Dooley &  1980).  (1974) p o i n t s o u t G o e t h e ' s c o n v i c t i o n t h a t  employment i s n a t u r e ' s  p h y s i c i a n a n d i s e s s e n t i a l t o human  18 h a p p i n e s s , as w e l l as F r e u d ' s b e l i e f t h a t work has a e f f e c t t h a n any o t h e r binding Query  technique of l i v i n g  i n the d i r e c t i o n of  t h e i n d i v i d u a l more c l o s e l y t o r e a l i t y .  (1968) , s e l f - i m a g e  such as work. majority  greater  According  i s a f f e c t e d by p u r p o s e f u l  to  activity  He w r i t e s , "work h a s m e a n i n g f o r t h e v a s t  and unemployment a f f e c t s t h e s u b j e c t i v e  t h a t a p e r s o n b e l i e v e s he h a s o n o t h e r i s p r o p o s e d b y many ( C y n k i n ,  people"  1979; K i e l h o f n e r ,  It  1977; Meyer,  N e v i l l e , Kreisberg  plays  an i m p o r t a n t r o l e i n t h e development and m a i n t e n a n c e o f personality.  Occupations  1985),  (p.158).  1922;  a healthy  & Kielhofner,  influence  that  work  L a s t l y , i n h e r b o o k The P s y c h o l o g y o f  ( 1 9 5 6 ) , Anne Roe r e l a t e s M a s l o w ' s n e e d s s y s t e m t o  work and c o n c l u d e s t h a t work i s p o t e n t i a l l y t h e most way t o f u l f i l l  t h e needs a t each l e v e l o f Maslow's  fruitful  hierarchy  of needs. S i g n i f i c a n c e o f Work f o r P e o p l e w i t h a M e n t a l  Disorder  A n o t h e r body o f l i t e r a t u r e a d d r e s s e s t h e s i g n i f i c a n c e o f work t o t h e m e n t a l h e a l t h and community a d j u s t m e n t o f i n d i v i d u a l s with mental The v a l u e I t normalizes  It  o f w o r k f o r many e x - p a t i e n t s  As F r e u d s u g g e s t e d , work l i n k s p e r s o n s t o  compelling  then t o deal with  i s a bulwark against  p a t i e n t s may kinds  i sincalculable.  t h e i r image o f t h e m s e l v e s as a d u l t s c a p a b l e o f  self-support. reality,  disorders.  regression.  f a c t s , not f i c t i o n s . T h r o u g h w o r k , some e x -  become more r e c e p t i v e a n d a c c e s s i b l e t o  of help.  F i n a l l y some e x - p a t i e n t s ,  other  t h r o u g h work,  may  19 begin  to reconsider  t h e i r v i e w s o f s o c i e t y i n more  friendly  t e r m s ; s y m b o l i c a l l y , w o r k o p p o r t u n i t i e s made a v a i l a b l e t o them c a n p r o v i d e  f i r m e v i d e n c e t h a t we r e a l l y c a r e .  c o m p l e t e d a s e a r l y as t h e 1960's d e m o n s t r a t e significance  Studies  this  ( O l s h a n s k y , 1962 p. 3 5 ) .  Brown, Bone, D a l i s o n and Wing  (1966) a n d Monck  d e m o n s t r a t e t h a t g a i n f u l employment i s a v a l u a b l e  (1963)  dimension  i n the p o s t h o s p i t a l i z a t i o n adjustment of i n d i v i d u a l s with schizophrenia.  As p a r t o f a l a r g e r s t u d y ,  Monck c o l l e c t e d  i n f o r m a t i o n o n t h e w o r k h i s t o r i e s o f 127 p a t i e n t s schizophrenia.  The p a t i e n t s w e r e i n t e r v i e w e d  month a n d t h e n one y e a r f o l l o w i n g d i s c a r g e  with  t w o w e e k s , one  from h o s p i t a l .  Monck o b s e r v e s t h a t f o r a p r o p o r t i o n o f t h e p a t i e n t s e m p l o y m e n t was a n e c e s s a r y c o n d i t i o n o f s t a y i n g o u t o f hospital. being  T h a t i s , when t h e p a t i e n t c o n t i n u e d  t o work though  o r becoming very d i s t u r b e d , t h e r e l a t i v e ' s  f o r h i s disturbed behavior explained,  was i n c r e a s e d .  As  tolerance  relatives  t h e p a t i e n t ' s e m p l o y m e n t s h o r t e n e d t h e amount o f  t i m e t h e y h a d t o s p e n d w i t h h i m , a n d i t a f f i r m e d t h a t i n one respect  a t l e a s t h e was s t i l l  p a t i e n t s ' p o i n t of view, going escaping  s o c i a l l y competant.  From t h e  t o w o r k o f f e r e d a means o f  the influence of "negative"  family relationships.  "These two c o n s i d e r a t i o n s o v e r l a p t h e n o r m a l h u m a n i t a r i a n economic reasons f o r m a i n t a i n i n g p a r t i c u l a r l y men  discharged  and  mental p a t i e n t s ,  i n open o r s h e l t e r e d employment"  (p.109).  B r o w n , B o n e , D a l i s o n and g r o u p o f 177  Wing  (1966) i n t e r v i e w e d a  p a t i e n t s from a l a r g e r study  a s k e d t h e m t o d e s c r i b e i n d e t a i l how t i m e d u r i n g t h e p r e v i o u s week.  o f 339  t h e y had  patients  spent  television set. unlikely to  The  Data a n a l y s i s r e v e a l e d  or s i t t i n g  authors  s t i m u l a t e an  o r t o h e l p them that this  nothing  i n f r o n t of  overcome t h e i r h a n d i c a p s .  lifestyle  that their  the  s u g g e s t t h a t t h i s way  interest in l i f e  and  their  unemployed i n d i v i d u a l s spend a v e r y h i g h p r o p o r t i o n of time e i t h e r doing  sub-  of l i f e  is  o u t s i d e t h e home They p o i n t  i s l i t t l e d i f f e r e n t from t h a t of  out  severely  h a n d i c a p p e d h o s p i t a l i z e d s c h i z o p h r e n i c p a t i e n t s f o r whom inactivity to  add  i s recognized  t o be  a harmful  t h a t "unemployment i s d e b i l i t a t i n g and  f u r t h e r breakdown.  I t r e d u c e s an  d e p e n d e n c y w h i c h i s an  S e r b a n and  role i n maintaining readmission study  they  admission questioned  readmission  to hospital,  a  preventing hospital During  their  individuals with schizophrenia.  On  s u b j e c t s were  i n r e l a t i o n t o t h e i r a t t i t u d e towards  a f t e r c a r e , e m p l o y m e n t , w e l f a r e and to  constant  f i n d t h a t work p l a y s  of i n d i v i d u a l s w i t h s c h i z o p h r e n i a .  and  a  i n s t u d i e s completed i n  Thomas (1974)  641  to  i n d i v i d u a l t o a s t a t e of  t h e m e n t a l h e a l t h and  questioned  lead  on  (p.72).  S i m i l a r r e s u l t s are described 1970s.  T h e y go  may  i n s u l t t o h i s d i g n i t y and  reminder of h i s f a i l u r e "  the  thing.  medication,  hospitalization.  In  order  determine the extent to which these v a r i a b l e s p r e d i c t  readmisssion,  a d i s c r i m i n a n t f u n c t i o n a n a l y s i s was  performed.  21 S e r b a n a n d Thomas f i n d t h a t u n e m p l o y m e n t  and dependence on  w e l f a r e a s s i s t a n c e r a n k a s t h e two most d i s c r i m i n a t i n g variables f o rdetermining  readmission  to hospital.  They  c o n c l u d e t h a t dependence on w e l f a r e promotes f u r t h e r d e t e r i o r a t i o n and c o n t r i b u t e s t o t h e i n d i v i d u a l ' s a l r e a d y negative  s e l f - c o n c e p t and t h e s e  i n d i v i d u a l t o accept social  i n turn condition the  t h e h o s p i t a l as t h e only  non-rejecting  institution.  Matthews  (1980) f i n d s t h a t i n d i v i d u a l s w i t h  s c h i z o p h r e n i a who p a r t i c i p a t e i n w o r k e x p e r i e n c e s significant  have a  increase i n t h e i r level of self-esteem  compared t o c o n t r o l s u b j e c t s . Matthew's study  This finding  i s the result of  o f t h e e f f e c t s o f i n v o l v e m e n t i n a work  program on t h e s e l f - e s t e e m  and s o c i a l b e h a v i o r s  individuals with chronic schizophrenia. experimental  as  He  o f 25  m a t c h e d 25  s u b j e c t s w i t h 25 c o n t r o l s u b j e c t s a n d t e s t e d  each s u b j e c t on a s e l f - c o n c e p t s c a l e p r i o r t o and f o l l o w i n g a t e n week w o r k p r o g r a m .  T h o s e who p a r t i c i p a t e d i n t h e w o r k  program were found t o i n c r e a s e t h e i r  level of self-esteem  s i g n i f i c a n t l y o v e r t h e t e n week p e r i o d , w h i l e t h e c o n t r o l subjects d i d not. More r e c e n t r e s e a r c h According  continues  t o Westermeyer and Harrow  t o support  these  results.  (1987) , w o r k h a s t a k e n  an added i m p o r t a n c e as t h e l e n g t h o f h o s p i t a l c a r e has diminished  f o r many i n d i v i d u a l s w i t h c h r o n i c m e n t a l  problems.  They w r i t e t h a t " g i v e n t h e i m p o r t a n c e o f  health  on  employment t o t h e s e l f - e s t e e m  and f i n a n c i a l s e c u r i t y o f  i n d i v i d u a l s i n t h e community... work a d j u s t m e n t i n psychiatric patients merits diagnosis,  a greater  t h e r a p y and r e s e a r c h  focus of concern i n  efforts"  (p.298).  (1983) i s a l s o c o n v i n c e d t h a t w o r k m e r i t s c o n c e r n and he c a u t i o n s  against  Watts  a greater  focus of  a lack of interest i n the  r o l e o f w o r k i n p s y c h i a t r i c r e h a b i l i t a t i o n . He a r g u e s  that  work i s c e n t r a l t o t h e s e l f - r e s p e c t and s e l f - c o n f i d e n c e o f many p e o p l e a n d t h a t w o r k i s a p a r t o f m o s t  peoples*  a s p i r a t i o n s f o r t h e resumption o f normal s o c i a l  life.  In  d i s c u s s i n g i n d i v i d u a l s with mental h e a l t h concerns, Watts writes,  "unless  p a t i e n t s * employment d i f f i c u l t i e s a r e  u n d e r s t o o d , r e h a b i l i t a t i o n e f f o r t may b e d i r e c t e d a t a s p e c t s o f w o r k f u n c t i o n i n g t h a t w i l l make o l n y a m a r g i n a l to their employability" It  difference  (p.216).  i s c l e a r from t h i s body o f l i t e r a t u r e t h a t work  plays  a c e n t r a l r o l e i n t h e m e n t a l h e a l t h o f an i n d i v i d u a l as i t a f f e c t s self-esteem,  s e l f - r e s p e c t and s e l f - c o n f i d e n c e .  It i s  a l s o c l e a r t h a t work has p o t e n t i a l b e n e f i t i n t h e r e h a b i l i t a t i o n a n d c o m m u n i t y a d j u s t m e n t o f i n d i v i d u a l s who have mental h e a l t h  problems. Work a n d  Employment S t a t u s  Schizophrenia  of Individuals with  Schizophrenia  Although, as i n d i c a t e d i n t h e previous is  discussion,  work  s i g n i f i c a n t t o t h e m e n t a l h e a l t h o f i n d i v i d u a l s , many  individuals with  schizophrenia  a r e unemployed.  Numerous  s t u d i e s demonstrate t h a t i n d i v i d u a l s w i t h schizophrenia  have  p r o b l e m s r e l a t e d t o o b t a i n i n g and r e t a i n i n g work ( B l e u l e r , 1978;  Brown, Bone, D a l i s o n & Wing, 1966; G u r e l ,  1965; H a l l ,  S m i t h , & S h i m k u n a s , 19 66; H a r r i s , L i n k e r , N o r r i s & S h e p h e r d , 1956;  Harrow, G r i n k e r , S i l v e r s t e i n & Holzman, 1978; Harrow,  G r i n k e r , S i l v e r s t e i n , Holzman & Carone, 1987; 1984;  McGlashen,  Westermeyer, Harrow & Carone, 1987; Tsuang, Woolson &  Fleming,  1979; Wold, R o s e n f e i l d & Dwight,  One o f t h e f i r s t g r o u p s t o s t u d y  1982).  t h e employment s t a t u s  o f i n d i v i d u a l s w i t h s c h i z o p h r e n i a was t h e g r o u p o f H a r r i s , L i n k e r , N o r r i s and Shepherd  (1956).  T h e y s t u d i e d 123  i n d i v i d u a l s w i t h s c h i z o p h r e n i a who h a d b e e n h o s p i t a l i z e d a n d t r e a t e d with i n s u l i n therapy  f i v e years  i n d i c a t e t h a t o n l y 45 p e r c e n t and  previous.  o f t h e p e o p l e were  e m p l o y e d o u t s i d e h o s p i t a l w h i l e 21 p e r c e n t  d e p e n d e n t l y i n t h e community and t h e r e m a i n i n g  They independent  were 34  living  percent  were h o s p i t a l i z e d . I n 1962, t h e V e t e r a n s A d m i n i s t r a t i o n i n t h e U n i t e d conducted a nationwide  study  o f employment and  among 720 r e c e n t l y r e l e a s e d p a t i e n t s w i t h ( G u r e l , 1 9 6 5 ) . The r e s e a r c h  readmission  schizophrenia  sought t o s p e c i f y t h e extent o f  p o s t h o s p i t a l employment and t h e f r e q u e n c y G u r e l r e p o r t s t h a t 50 p e r c e n t employed a t a l l d u r i n g t h e  of  readmission.  o f t h e p a t i e n t s were n o t  37 week f o l l o w u p  period.  B r o w n , B o n e , D a i l s o n a n d W i n g (1966) r e p o r t r e s u l t s from t h e i r f i v e year  States  follow-up  study  similar  o f 3 39  patients  with schizophrenia.  B a s i c i n f o r m a t i o n o n e m p l o y m e n t was  c o l l e c t e d by i n t e r v i e w s w i t h t h e p a t i e n t o r r e l a t i v e , supplemented by i n f o r m a t i o n exchange r e c o r d s .  The  i d e n t i f i e d as f i r s t  f r o m h o s p i t a l and employment  p a t i e n t s , 147 men a n d 192 women, a r e  admitted  o r p r e v i o u s l y admitted.  The  most s t r i k i n g f i n d i n g i s t h a t , a t t h e end o f t h e f i v e 55 p e r c e n t  o f a l l t h e men w e r e o u t o f w o r k .  of t h e p r e v i o u s l y admitted follow-up  J u s t under h a l f  domestic  shows t h a t t h r e e - q u a r t e r s  f i f t h s of a l l p r e v i o u s l y admitted decline i n occupation period.  or. w e r e umemployed b y t h e e n d o f t h e  Among t h e f i r s t  a d m i s s i o n p a t i e n t s , one t h i r d  umemployed b y t h e e n d o f t h e s t u d y  1966,  by H a l l ,  provides  experienced  period.  a d d i t i o n a l i n f o r m a t i o n on t h e p r e and of individuals with  The a u t h o r s r e p o r t t h a t j o b d i f f i c u l t i e s  by 60.1 p e r c e n t  period preceeding discharge,  o r were  Smith and Shinkunas, a l s o p u b l i s h e d i n  p o s t h o s p i t a l work e x p e r i e n c e s schizophrenia.  t o four-  p a t i e n t s had e i t h e r a  t o o n e h a l f o f them h a d a d e c l i n e i n o c c u p a t i o n  A study  duties  The a u t h o r s r e p o r t t h a t a c o m p a r i s o n o f p r e and  post admission occupation  study  years,  women w e r e e i t h e r u n e m p l o y e d a t  o r were u n a b l e t o p e r f o r m t h e i r  competently.  a n d was  of the patients i n the five  admission t o h o s p i t a l .  t h i s r a t e had increased  were year  One y e a r a f t e r  t o 72.3 p e r c e n t .  They  n o t e t h a t i t i s p a r t i c u l a r l y s t r i k i n g t h a t 29;5 p e r c e n t o f p a t i e n t s who w e r e c l a s s i f i e d a s s t e a d y w o r k e r s p r i o r t o  h o s p i t a l i z a t i o n w e r e c a t e g o r i z e d a s n o n w o r k e r s a f t e r an episode  of  acute  schizophrenia.  Bleuler  (1978) d e s c r i b e s t h e r e s u l t s o f one  longest follow-up completed.  the  s t u d i e s of s c h i z o p h r e n i c p a t i e n t s  I n Z u r i c h , i n 1942,  p a t i e n t s . Twenty-three years extensive data  of  ever  B l e u l e r began a study  later,  i n 1965,  i n t o a book e n t i t l e d  The  he  of  208  compiled  the  Schizophrenic  D i s o r d e r s : L o n q t e r m P a t i e n t and  Family  of the study  of t h e p a r t i c i p a n t s were  employable  period, 34 percent and  12 p e r c e n t  who  were a c t u a l l y  be  It  e m p l o y a b i l i t y as employed.  i s c l e a r from the aforementioned s t u d i e s t h a t a  number o f i n d i v i d u a l s w i t h s c h i z o p h r e n i a a r e n o t How  The  were unemployable.  figures represent  o p p o s e d t o t h e p e r c e n t a g e who It  end  of the p a r t i c i p a n t s c o u l d not  d e t e r m i n e d , l e a v i n g 51 p e r c e n t noted that these  At the  were p a r t l y e m p l o y a b l e .  s o c i a l p o s i t i o n of 3 percent  s h o u l d be  Studies.  large  working.  does t h i s compare t o t h e employment s t a t u s o f i n d i v i d u a l s  with other mental i l l n e s s e s ?  Several researchers  a t t e m p t e d t o a n s w e r t h a t q u e s t i o n and schizophrenia  present  have  evidence  i s more h i g h l y c o r r e l a t e d w i t h i m p a i r e d  f u n c t i o n i n g than are other p s y c h i a t r i c diagnoses. example, i n t h e i r study  of young c l i e n t s w i t h  H o l z m a n (1978) a s s e s s e d  t i m e o f h o s p i t a l i z a t i o n and o f 2.7  years  132  then reassessed  after h o s p i t a l discharge.  The  work  For  schizophrenia  d u r i n g t h e e a r l y phase of t h e i r d i s o r d e r , Harrow, S i l v e r s t e i n and  that  Grinker,  c l i e n t s at t h e m an  the  average  sample i n c l u d e d  26 79 c l i e n t s w i t h s c h i z o p h r e n i a  a n d 53  nonschizophrenic  c l i e n t s . Assessment i n v o l v e d a d e t a i l e d e v a l u a t i o n of s o c i a l , work and f a m i l y f u n c t i o n i n g , t h e c l i e n t s ' evaluations  of t h e i r  intellectual  own m e n t a l h e a l t h , t h e c l i e n t s '  l e v e l , t h e i r use of medication  symptomatology.  Their study  with schizophrenia  results  of the l a r g e s t s i g n i f i c a n t  schizophrenic  clients  s h o w i n g one  d i f f e r e n c e s i s t h a t o f work i n work f u n c t i o n i n g i s  some d i f f i c u l t y ,  or l e s s than  study,  Harrow and  f i n d that the post-acute clients  role.  colleagues  work f u n c t i o n i n g o f  shows s i g n i f i c a n t  comparison with nonschizophrenic  of the  adequate  i n p e r f o r m a n c e o f t h e i r e x p e c t e d work  In a second follow-up (1987) a g a i n  indicate that  s t r i k i n g among t h e m a l e s ; t h r e e - f o u r t h s  show a t l e a s t  functioning,  their  c l i e n t s and t h e a r e a  functioning. This d i f f i c u l t y  men  and  have poorer p o s t - h o s p i t a l adjustment as  compared t o n o n s c h i z o p h r e n i c  particularly  subjective  differences i n  clients.  They i n d i c a t e .  t h a t , when v i e w e d f r o m a b r o a d e r p e r s p e c t i v e ,  the data  on t h e  v a r i o u s a r e a s o f f u n c t i o n i n g r e i n f o r c e t h e i m p o r t a n c e o f work a d j u s t m e n t and s o c i a l p e r f o r m a n c e . that although  Their f i n d i n g s suggest  work and s o c i a l d y s f u n c t i o n i n g a r e o f t e n  seen  a s s e c o n d a r y symptoms, d u r i n g t h e c o u r s e o f t h e d i s o r d e r t h e s e s e c o n d a r y f e a t u r e s may become e q u a l l y o r more than the psychotic patient's overall  f e a t u r e s i n terms of t h e adjustment.  important  individual  S i m i l a r r e s u l t s a r e f o u n d by Tsuang, Woolson (1979),  who d e s c r i b e t h e i r  30 t o 40 y e a r f o l l o w u p  and F l e m i n g o f 685  p e o p l e w i t h s c h i z o p h r e n i a , mania, d e p r e s s i o n  and  nonpsychiatric conditions.  long term  o u t c o m e was a n a l y z e d residential,  For t h e i r study,  i n terms o f s u b j e c t s ' m a r i t a l ,  o c c u p a t i o n a l and p s y c h i a t r i c s t a t u s .  c a t e g o r i e s o f good,  fair,  Using the  and p o o r , a s r a t i n g s on each  s u b j e c t f o r e a c h v a r i a b l e , a mean r a t i n g f o r e a c h d i a g n o s t i c g r o u p was o b t a i n e d .  Compared t o t h e o t h e r g r o u p s w h i c h  fell  i n t o t h e f a i r o r good c a t e g o r i e s f o r t h e v a r i a b l e o f e m p l o y m e n t , t h e s c h i z o p h r e n i c g r o u p was r a t e d i n t h e poor  category. Wold, R o s e n f i e l d and Dwight  the diagnosis of schizophrenia  (1982) a l s o f i n d  that  i m p a i r s work p e r f o r m a n c e  s i g n i f i c a n t l y more t h a n w o u l d be t h e c a s e f o r o t h e r diagnostic entities.  They s t u d i e d t h e r e l a t i o n s h i p between  work p e r f o r m a n c e and d i a g n o s i s i n a community c l i n i c population. admitted  Two h u n d r e d a n d e i g h t e e n  c l i e n t s were c l a s s i f i e d  mental health consecutively  i n 13 d i a g n o s t i c c a t e g o r i e s .  E a c h s u b j e c t was r a t e d a s t o w h e t h e r o r n o t w o r k i m p a i r m e n t was p r e s e n t .  As t h e y r e p o r t , s c h i z o p h r e n i a and b i p o l a r  d i s o r d e r s a r e f o u n d t o i m p a i r work p e r f o r m a n c e more t h a n o t h e r d i a g n o s t i c e n t i t i e s . B u e l l and Anthony  Similarly,  significantly s t u d i e s by  (1973) a n d O l s h a n s k y , G r o b a n d E k d a h l  (1960) d e m o n s t r a t e t h a t a d i a g n o s i s o f s c h i z o p h r e n i a p r e d i c t o r o f p o o r work p e r f o r m a n c e .  i s a  28 While the previous  s t u d i e s compare t h e employment s t a t u s  of i n d i v i d u a l s with schizophrenia to that of i n d i v i d u a l s with other p s y c h i a t r i c diagnoses,  one  study  offers additional  i n f o r m a t i o n on t h e d i f f e r e n c e b e t w e e n s c h i z o p h r e n i a and forms of i l l n e s s .  other  Rather than comparing s c h i z o p h r e n i a  o t h e r d i a g n o s t i c c a t e g o r i e s , W e s t e r m e y e r , H a r r o w and (1987) c o m p a r e t h e w o r k f u n c t i o n i n g o f  and  Carone  non-psychotic  i n d i v i d u a l s t o t h a t of i n d i v i d u a l s w i t h s c h i z o p h r e n i a , psychotic disorder. follow-up  study  nonpsychotic  They d e s c r i b e t h e  o f 53  then again All  individuals.  i n t e r v i e w s two  P a r t i c i p a n t s were a s s e s s e d then reassessed years  i n two  successive  f a m i l y f u n c t i o n i n g , symptomatology  rehospitalization.  S t a t i s t i c a l t e s t s comparing the  poorer  assessments, w i t h schizophrenic c l i e n t s  f u n c t i o n i n g than non-psychotic  clients  of  and two  groups of c l i e n t s i n d i c a t e s i g n i f i c a n t d i f f e r e n c e s at follow-up  and  after h o s p i t a l discharge.  interviews involved detailed evaluation  s o c i a l , w o r k and  49  at  after h o s p i t a l discharge,  from four t o f i v e years  follow-up  their  i n d i v i d u a l s w i t h s c h i z o p h r e n i a and  i n d e x h o s p i t a l i z a t i o n and follow-up  r e s u l t s of  a  both  showing  i n the area  of  work. Another study those  that provides  just described  i s one  r e s u l t s s i m i l a r t o a l l of  designed  by M c G l a s h e n  (1984).  In  c o n t r a s t t o t h e o t h e r s t u d i e s , however, McGlashen i n c o r p o r a t e s v o l u n t e e r w o r k and employment. For h i s s t u d y ,  studying  in his definition  employment r e f e r s t o w o r k i n g f o r  of  29 pay,  pursuing  s t u d i e s , c a r i n g f o r a h o u s e h o l d and  c h i l d r e n and e n g a g i n g i n v o l u n t e e r work. a f i f t e e n year  follow-up  raising  H i s study  involves  o f 226 c l i e n t s t r e a t e d a t C h e s t n u t  Lodge, a s m a l l p r i v a t e p s y c h i a t r i c h o s p i t a l .  The  clients,  i n c l u d i n g 163 p e o p l e w i t h s c h i z o p h r e n i a , w e r e a s s e s s e d f o r t h e amount o f t i m e s p e n t i n h o s p i t a l , number o f s o c i a l activities,  experience  o f symptoms,  amount o f t i m e s p e n t i n  a c t i v e employment and t h e i r r a t e o f g o b a l  functioning.  Even  w i t h t h e b r o a d e r v i e w o f employment, compared t o t h e c l i e n t s i n other diagnostic categories, the c l i e n t s  with  schizophrenia worked.less f o r a s i g n i f i c a n t l y f r a c t i o n of the follow-up Factors Hindering  greater  period.  Employment  A s j u s t d e s c r i b e d , many s t u d i e s show t h a t i n d i v i d u a l s w i t h s c h i z o p h r e n i a have d i f f i c u l t y job.  This  these  i n d i v i d u a l s have d i f f i c u l t y  work?  i n f i n d i n g and k e e p i n g  l e a d s t o t h e q u e s t i o n : what a r e t h e r e a s o n s t h a t  Several authors  i n f i n d i n g and  and r e s e a r c h e r s  keeping  p r o v i d e v i e w s on t h e  r e a s o n s f o r work i m p a i r m e n t i n t h i s p o p u l a t i o n . Katz  a  McCue a n d  (1983) s u g g e s t t h a t b e h a v i o r a l symptoms s u c h a s  delusions, hallucinations, social behaviors  isolation,  bizarre  and r e s t l e s s n e s s i n h i b i t j o b a q u i s i t i o n and work  adjustment.  I t should  be n o t e d t h a t o t h e r s d i s a g r e e .  A  number o f s t u d i e s i l l u s t r a t e t h e l a c k o f r e l a t i o n s h i p b e t w e e n a s s e s s m e n t s o f p s y c h i a t r i c symptomology and f u t u r e work performance  (Ellsworth, Foster, Childers, Arthur,  &  Kroeker,  30 1968;  Gurel  & Lorei,  Werner-Eilert, & Astrachan,  1972:  Lorei,  & Wuschenr-Stockheim,  1975:  Strauss  1967; M o l l e r , v o n 1982:  & Carpenter,  Zersten,  Schwartz, Meyers,  1974  ).  For  example,  v o c a t i o n a l performance f o r p a t i e n t s w i t h schizophrenia  does  not c o r r e l a t e w i t h thought d i s o r d e r s , depression, f l a t t e n e d emotion  (Strauss & Carpenter,  hostility  and d e p r e s s i o n  global psychopathological  1974), o r w i t h a n x i e t y ,  (Gurel & L o r e i ,  1972); nor  s t a t e ( M o l l e r , Von  Eilert  & Wuschner-Stockheim,  Dwight  (1982),  i n the study  1982).  with  Zersten,  Werner-  Wold, R o s e n f e l d  previously discussed,  verbal  and  conclude  t h a t work performance i s n o t n e c e s s a r l y c o r r e l a t e d t o s e v e r i t y o f symptoms.  Summarizing  studies that look  p r e d i c t o r s o f work p e r f o r m a n c e , Anthony  and J a n s e n  at (1984)  s u g g e s t t h a t , r a t h e r t h a n symtoms, a p o o r w o r k h i s t o r y , i n a b i l i t y t o get along with others  and p o o r e g o - s t r e n g t h  in  t h e r o l e o f w o r k e r a r e more s t r o n g l y r e l a t e d t o l a c k o f success  i n employment.  Krupa and T h o r n t o n the  (1986) o f f e r f u r t h e r e x p l a n a t i o n s f o r  f a c t t h a t l a r g e numbers o f i n d i v i d u a l s w i t h  a r e unemployed.  schizophrenia  They w r i t e t h a t " h y p o h e d o n i a w i l l  affect  the schizophrenic c l i e n t ' s a b i l i t y t o f i n d s a t i s f a c t i o n i n t e r e s t i n occupational behaviors" d e c r e a s e i n t h e amount o f p l e a s u r e  (p.7).  Hypohedonia,  experienced,  is a  K r u p a and T h o r n t o n  hypohedonia a f f e c t s the a b i l i t y  (198 6) c o n c l u d e t h a t  o f an i n d i v i d u a l t o  a  feature  common t o a s i g n i f i c a n t p r o p o r t i o n o f p e o p l e w i t h schizophrenia.  and  find  s a t i s f a c t i o n and i n t e r e s t i n work b e h a v i o r s a longstanding  and t h e r e f o r e has  and a d v e r s e i n f l u e n c e on e f f e c t i v e n e s s i n  keeping a job. W e s t e r m e y e r a n d H a r r o w (1987) d e s c r i b e a s t u d y designed t o research impaired  they  f a c t o r s w h i c h m i g h t be i n v o l v e d i n t h e  w o r k f u n c t i o n i n g f o u n d i n many i n d i v i d u a l s w i t h  schizophrenia. inpatients,  A s a m p l e o f 125 f o r m e r p s y c h i a t r i c  i n c l u d i n g 33 p e o p l e w i t h s c h i z o p h r e n i a ,  f o l l o w e d up a n d s u b j e c t e d  to detailed structured  was  interviews  t o d e t e r m i n e p o s s i b l e f a c t o r s l e a a d i n g t o d e c l i n e i n work functioning.  During the interview, c l i e n t s  provided  i n f o r m a t i o n o n s p e c i f i c symptom/work l i n k a g e s i n e v e r y d a y work s e t t i n g s .  C l i e n t s described  s i t u a t i o n s i n which  symptoms s u c h a s d e c r e a s e d c o n c e n t r a t i o n , and  l e t h a r g y d i s r u p t e d work.  paranoid  ideation  Following the interviews,  subjects completed a w r i t t e n c h e c k l i s t which  presented  s i x t e e n s p e c i f i c r e a s o n s f o r c u r r e n t work d i s r u p t i o n s including difficulty depression,  i n thinking or concentrating,  d i s t r u s t of other people, medications,  anxiety, lack of  e n e r g y , need t o a v o i d work s t r e s s , l i t t l e m o t i v a t i o n f o r working, lack skills,  of job opportunity,  lack of education  or job  d i s c r i m i n a t i o n , fear of f a i l i n g , d i f f i c u l t i e s i n  r e l a t i n g t o o t h e r p e o p l e , f e a r o f s o c i a l r e l a t i o n s h i p s and drug or a l c o h o l problems. d i s t i n g u i s h e d work i m p a i r e d from those without  Two p a r t i c u l a r  reasons  individuals with  schizophrenia.  schizophrenia  The f o r m e r w e r e more  l i k e l y than nonschizophrenics p e o p l e and  t o i d e n t i f y d i s t r u s t of  m e d i c a t i o n s as d i s r u p t i v e t o work a d j u s t m e n t .  authors indicate that, l o g i c a l l y , people with paranoid  schizophrenia  i d e a t i o n and  symptoms.  other  one  The  m i g h t assume t h a t  w o u l d be more l i k e l y t o  experience  to take medication to control  psychotic  They s u r m i s e t h a t a n t i - p s y c h o t i c m e d i c a t i o n s  may  be more d i s r u p t i v e t o e f f e c t i v e w o r k f u n c t i o n i n g t h a n many other  types of medications.  W e s t e r m e y e r and  Harrow  B a s e d on t h e  (1987) c o n c l u d e t h a t  pathognomonic of s c h i z o p h r e n i a d i s r u p t i n g the  capacity  Jeffries,  w o r k f o r c e and following: the  data,  symptoms  p l a y a major r o l e i n  f o r work.  Plummer, Seeman and  that ex-patients  interview  Thornton  (1990)  inicate  are o f t e n ambivalent about r e t u r n i n g t o  c i t e s e v e r a l a r e a s o f c o n c e r n s u c h as  l a c k of confidence  job, d i f f i c u l t y  time pressures,  the  i n ones a b i l i t y t o cope  i n g e t t i n g up  i n t h e m o r n i n g and  f e a r o f a l o n g t e r m commitment,  p r e o c u p a t i o n w i t h t h o u g h t , and  moodiness.  the  with facing  slowness,  Hall,  Smith  and  S h i m k u n a s (1966) w r i t e t h a t i n t e r f e r e n c e i n w o r k p e r f o r m a n c e i s o f t e n due thinking,  t o s u c h f a c t o r s as p o o r judgement f r o m  l a c k of i n i t i a t i v e ,  unpredictable  a b s c e n c e from work because of p a r a n o i d s u c h as  l a c k o f e n t h u s i a s m and  organize  tasks  fears.  and  Other f a c t o r s , criticism  i n a b i l i t y t o pace work  (Wadsworth, W e l l s & S c o t t ,  h y p e r s e n s i t i v i t y to censure  behavior,  s e n s i t i v i t y to  ( W a t t s , 1 9 7 8 ) , f a t i g u a b i l i t y and  concrete  1962),  and  and  ( R o d n i c k & Garmezy, 1957),  are  c i t e d as and  factors accounting for d e f i c i t s  employment s t a t u s .  Factors  Facilitating  A n o t h e r body o f  Employment l i t e r a t u r e addresses f a c t o r s r e l a t e d  good employment outcome.  A b i l i t y to function socially  o t h e r s seems t o i m p r o v e t h e maintaining  work.  (Griffiths,  R a t i n g s of g e n e r a l  1974;  Gurel  Sturm & L i p t o n ,  functioning  & L o r e i 1972;  1967).  i s described  s o c i a l f u n c t i o n i n g , the  The  Strauss  & Carpenter,  d i f f e r e n t l y i n each  study.  range of  studies  have  performance  social  items used to  tap  are very s i m i l a r i n f i n d i n g a  r e l a t i o n s h i p between s o c i a l a b i l i t y , p e r f o r m a n c e , and  with  social functioning  concept of  Nonetheless, i n s p i t e of the  to  c h a n c e s o f an i n d i v i d u a l  been found t o c o r r e l a t e w i t h v o c a t i o n a l  1974;  i n work p e r f o r m a n c e  future  vocational  e f f o r t s t o improve i n d i v i d u a l s ' work  histories. Another f a c t o r that f i n d i n g and p r o g r a m s and  improves i n d i v i d u a l s ' chances  keeping a job i s p a r t i c i p a t i o n i n c e r t a i n s e r v i c e s . W i n g (1960) d e m o n s t r a t e s  i n d u s t r i a l work programs a r e with  schizophrenia  that  effective i n helping  o b t a i n work.  S t e i n and  Test  describe  a c o m m u n i t y t r e a t m e n t p r o g r a m f o r an  group of  65  adult psychiatric patients.  group p a r t i c i p a t e d i n d a i l y a c t i v i t i e s , and  of  The  individuals (1976)  experimental experimental  learned  living  skills  were h e l p e d t o f i n d j o b s or s h e l t e r e d workshop placement.  S t a f f gave o n - t h e - j o b support a f t e r placement, w i t h  daily  contact  at f i r s t , diminishing  Results  show t h e  in  as t h e p a t i e n t  e x p e r i m e n t group has  symptoms, i s e m p l o y e d more, and  e s t e e m and  satisfaction with  progressed.  a significant  scores  l i f e than  higher  reduction  in  self-  a c o n t r o l group of  65  individuals. Seeman (1978) e x a m i n e d t h e r e l a t i v e e f f e c t i v e n e s s  of  s p e c i a l t y c l i n i c s versus p r i v a t e p s y c h i a t r i c treatment f o r clients with  schizophrenia.  assigned  c l i e n t s t o e i t h e r the  clinic  the  On  discharge,  end  significantly  of s i x months, c l i n i c  Her  She  analysis  clients  l e s s t i m e i n h o s p i t a l s and  more o c c u p i e d i n e m p l o y m e n t o r i n s c h o o l clients.  randomly  specialized aftercare  or to a p r i v a t e p s y c h i a t r i s t .  t h a t , at the  she  are  indicates  spend  significantly  than are  private  concludes t h a t the network of s t a f f a i d s  the  c l i e n t ' s t r a n s i t i o n i n t o employment. Denicola  (1980) d e s c r i b e s  a study comparing  the  e f f e c t i v e n e s s of f o u r d i f f e r e n t methods of t r a i n i n g j o b interview s k i l l s for clients with schizophrenia. c l i e n t s were a s s i g n e d e m p l o y i n g : 1) c e n s u r e , 2)  to three modelling  censure p r a i s e reinforcment  j o b i n t e r v i e w b e h a v i o r was  c o n t r o l g r o u p w h i c h saw behavioral Results  an  or p r a i s e  i n d i c a t e t h a t the  and  videotaped  given,  i r r e l e v a n t videotape.  i n t e r v i e w s c a l e was  Fifty  conditions  a d i d a c t i c c o n d i t i o n i n which a  i n s t r u c t i o n on  30  o r 3)  a  A  used as a dependant measure.  c e n s u r e d m o d e l and  the  reinforced/censured  model c o n d i t i o n s  the  r e l a t i v e t o the other groups.  clients'  skills  significantly  improved  Many s t u d i e s d e m o n s t r a t e t h e e f f e c t i v e n e s s o f workshops  on i n d i v i d u a l s ' w o r k p e r f o r m a n c e a n d  adjustment. Miller  workshop  social  W r i t i n g i n t h e 1950s, B e l l a k , B l a c k ,  (1956) d e s c r i b e program  the effectiveness of a  sheltered  Lurie  and  sheltered  and w r i t e " i n s u c h programs, work assumes  e v e n more s o c i a l and p s y c h o l o g i c a l v a l u e b e c a u s e h e r e w o r k habits are aquired  i n t h e m i d s t o f an e n v i r o n m e n t o f e a s e ,  t r u s t and f r i e n d s h i p " ( p . 2 9 6 ) . summarize  Anthony  the r e s u l t s of various  and J a n s e n  (1984)  s t u d i e s and w r i t e t h a t  the  b e s t c l i n i c a l p r e d i c t o r o f f u t u r e work performance i s r a t i n g s o f a p e r s o n ' s w o r k a d j u s t m e n t s k i l l s made i n a setting or sheltered job s i t e . adjustment s k i l l s  In studies  workshop  i n w h i c h work  w e r e a s s e s s e d , s u c h s k i l l s w e r e f o u n d t o be  s i g n i f i c a n t l y r e l a t e d t o f u t u r e work p e r f o r m a n c e  (Cheadle,  C u s h i n g , Drew, & M o r g a n , 1967; C h e a d l e & M o r g a n ,  1972;).  Stein  (1984) p r o v i d e s a c o m p r e h e n s i v e  designed t o  help  individuals with potential.  and a p p t i t u d e s , prevocational  to realize their  i n c l u d e programs  Stein  programs  occupational  counseling,  work  f o r evaluation of  information  groups,  vocational training,  group c o u n s e l l i n g , t r a n s i t i o n a l v o l u n t e e r workshops,  of  psychiatric patients, including schizophrenia,  These  list  work,  skills  individual pre-employment sheltered  t e m p o r a r y t r y o u t work, and s p e c i a l p l a c e m e n t .  (1984) d i s c u s s e s  various  s t u d i e s t h a t demonstrate the  effectiveness of these general,  t h e programs a r e very  describes  a study t o evaluate  t r a n s i t i o n a l volunteer involved  effective.  F o r example, he  the effectiveness of a  work program.  The 1960's s t u d y  60 women who p a r t i c i p a t e d i n a n i n f o r m a l  project.  A l l o f t h e women w e r e d i a g n o s e d w i t h  schizophrenia The  programs and c o n c l u d e s t h a t , i n  research  chronic  a n d h a d b e e n h o s p i t a l i z e d f r o m 15 t o 25 y e a r s .  s t u d y f i n d i n g s r e v e a l t h a t o u t o f t h e o r i g i n a l sample, 3 2  women w e r e e m p l o y e d i n p r i v a t e i n d u s t r y , 4 w e r e h o u s e w i v e s , 8 d i d n o t improve, 5 were b e i n g 11 w e r e s t i l l  p r e p a r e d f o r j o b placement, and  i nthepsychiatric hospital.  Stein  concludes  t h a t t h e study demonstrates t h e e f f e c t i v e n e s s o f s t r u c t u r e d t r a n s i t i o n a l voulunteer  work f o r h o s p i t a l i z e d p a t i e n t s .  K u e h n e l , L i b e r m a n , S t o r z b a c h a n d R o s e (1990) provide  a list  o f e f f e c t i v e programs.  book, t h e a u t h o r s p r o v i d e as,  In their  also resource  many e x a m p l e s o f w h a t t h e y r e f e r t o  h i g h q u a l i t y , e f f e c t i v e community s u p p o r t programs.  s e c t i o n o f t h e book d e a l s programs.  s p e c i f i c a l l y with  One  vocational  The a u t h o r s i n c l u d e a d i s c u s s i o n o f t h e e v a l u a t i o n  of t h e s e r v i c e s , and i t i s c l e a r t h a t t h e programs a r e effective i nhelping They d e s c r i b e , corporation  i n d i v i d u a l s o b t a i n and r e t a i n work.  f o r example, Eden E x p r e s s I n c . ,  that provides  t r a i n i n g program. success rate.  a restaurant  based  a nonprofit  vocational  They i n d i c a t e t h a t t h i s program h a s a h i g h  I n a followup  s u r v e y , 72 f o r m e r  clients  r e s p o n d e d , o f w h i c h 84 were g o i n g t o  p e r c e n t were a b l e  McCourt  (1965) d e m o n s t r a t e s  of s p e c i a l placement programs.  nationwide study to evaluate discharged patients with (1965) f o u n d t h a t , 53 participated  or  school.  A s t u d y by W a l k e r and effectiveness  to maintain jobs  the  the  In completing  employment outcome o f  schizophrenia,  W a l k e r and  percent of the p a t i e n t s  211  McCourt  had  i n a v o c a t i o n a l r e h a b i l i t a t i o n program a the  hospital, while  47  a f t e r discharge.  p e r c e n t were employed f o r a p e r i o d The  n e e d f o r much g r e a t e r  and/or placement centers sucessfully obtain v  of s p e c i a l i n helping  employment  the  of  time  i n v e s t i g a t o r s conclude that there use  is a  centers  the mentally  ill  to  employment.  A n o t h e r f a c t o r r e l a t e d t o good employment outcome i s p r e s e n c e o f a good work h i s t o r y . p r e d i c t o r s of  i n v e s t i g a t i n g the h i s t o r y and  One  Zersten,  L o r e i , 1967;  Werner-Eilert  Lorei & Gurel,  and  on t h e  at the  show a s i g n i f i c a n t  1973;  (Lipton Moller,  For  example,  from the p a t i e n t  time of the p a t i e n t ' s r e l e a s e  & von  Strauss  r e l a t i o n s h i p between employment  s e v e r a l demographic v a r i a b l e s obtained or records,  employment  & W u s c h n e r - S t o c k h e i m , 1982;  Walker & McCourt, 1965).  report  Studies  variables  C a r p e n t e r , 1974; Gurel  person's p r i o r  r e l a t i o n s h i p between p r e v i o u s  f u t u r e v o c a t i o n a l performance  the  b e s t demographic  (Anthony & Jansen, 1984).  p o s i t i v e a s s o c i a t i o n b e t w e e n t h e two K a d e n , 19 65;  of the  f u t u r e work p e r f o r m a n c e i s t h e  employment h i s t o r y  a  from  &  Lorei and and  38  hospital.  The a u t h o r s r e p o r t t h a t  consistent  with the expectation that  be t h e b e s t p r e d i c t o r of  of future  "the r e s u l t s are eminently past behavior tends t o  behavior.  amount o f w o r k i n t h e f o l l o w - u p p e r i o d  The b e s t  was t h e m o n t h s o f  f u l l - t i m e work i n t h e f i v e y e a r s p r i o r t o r e l e a s e " W h i l e t h e employment h i s t o r y i n each o f these s t u d i e s ,  predictor  (p.427).  i s d e f i n e d somewhat d i f f e r e n t l y  the results are quite  uniform.  In summarizing t h e l i t e r a t u r e addressing t h e relationship made.  o f work and s c h i z o p h r e n i a , s e v e r a l  First,  t h e r e i s abundant evidence t h a t  p o i n t s c a n be individuals  w i t h s c h i z o p h r e n i a have problems f i n d i n g and k e e p i n g a j o b . This finding of  i s made e s p e c i a l l y  c l e a r when t h e w o r k h i s t o r i e s  i n d i v i d u a l s w i t h s c h i z o p h r e n i a a r e compared t o t h e work  h i s t o r i e s o f i n d i v i d u a l s who h a v e o t h e r t y p e s o f m e n t a l disorders. the  S e c o n d , many f a c t o r s  have a n e g a t i v e impact on  i n d i v i d u a l ' s a b i l i t y t o f i n d and keep a j o b .  i s disagreement as t o which f a c t o r s i t h a s been s u g g e s t e d t h a t dysfunction,  lack  While  have t h e s t o n g e s t  p s y c h o t i c symptoms,  of confidence, lack  of enthusiasm,  side factors  a f f e c t t h e person's a b i l i t y t o g e t and keep a j o b . A  individual's  chances o f s u c c e s s f u l l y  obtaining  Some f a c t o r s ,  describe internal conditions  employability,  third  t h e r e a r e many f a c t o r s w h i c h may i m p r o v e t h e  m a i n t a i n i n g employment. history,  impact,  social  e f f e c t s o f m e d i c a t i o n s , h y p o h e d o n i a , a n d many o t h e r  point i s that  there  other factors,  and  such as p r e v i o u s work t h a t may  such as s k i l l s  improve  training  39 p r o g r a m s , p r e s c r i b e e x t e r n a l c o n d i t i o n s t h a t may  improve  employability. R e f e r e n c e t o Work i n t h e Within no  Experiential Literature  t h e body o f l i t e r a t u r e j u s t d e s c r i b e d ,  d i s c u s s i o n of the  individual's perspective  e x p e r i e n c e o f o b t a i n i n g and  r e t a i n i n g work.  of  is ask  whether there  are  schizophrenia  the  literature pertains to individuals with A p a r t f r o m t h e p a t i e n t s who  One  psychiatrists.  The  busied  and  other  (Sonn 1977,  p o t e n t i a l sources of  plays, is  p.249)."  knowledge  f i r s t person accounts,  basic  patient's  i n c l u d e s w r i t e r s of novels  a few  the  patient's  groups t h a t have  experiences of i n d i v i d u a l s w i t h  clients'  of  their  on t r y i n g t o u n d e r s t a n d t h e  comprised of s o c i a l s c i e n t i s t s  the  is a  schizophrenia.  themselves w i t h mental i l l n e s s from the  illness:  whether  a l a r g e p o r t i o n of  have w r i t t e n of  p o i n t o f v i e w . . . t h e r e a r e two  concerning the  the  t h e e x i s t e n t i a l t h e r a p i s t s whose  approach centers  Sonn i d e n t i f i e s t h r e e  might  there  experiences  i n d i v i d u a l s w i t h m e n t a l d i s o r d e r s , and  There  One  and  I n answer t o t h i s ,  body o f l i t e r a t u r e w h i c h d e c r i b e s  f i l m m a k e r s and  how  sources of knowledge c o n c e r n i n g  t h e s e s o u r c e s d i s c u s s work.  perspective.  work,  a c t u a l work e x p e r i e n c e s .  experiences of i n d i v i d u a l s w i t h  e x p e r i e n c e s and  the  what f a c t o r s i n t e r f e r e w i t h work.  l e s s concern with the  is  T h e r e seems t o  be more c o n c e r n w i t h t h e numbers o f p e o p l e who o f t e n t h e y w o r k , and  there  mental  the  40 professionals'  a c c o u n t s , and t h e l i t e r a r y a c c o u n t s .  a c c o u n t s such as Kesey  (1962) p r o v i d e l i t t l e  Literary  information  about t h e work e x p e r i e n c e o f p e o p l e w i t h s c h i z o p h r e n i a therefore discussion w i l l professionals' F i r s t Person  f o c u s on t h e c l i e n t s '  and  accounts.  Accounts  T h e r e . a r e many f i r s t p e r s o n a c c o u n t s o f t h e e x p e r i e n c e of  l i v i n g w i t h mental i l l n e s s .  Some i n d i v i d u a l s h a v e w r i t t e n  b o o k s d e c r i b i n g t h e i r e x p e r i e n c e ( B e e r s , 1953; N o r t h , 1987;  Sechehaye,  1951;  S t e f a n , 1966;  Gibson,  Vonnegut,  1976; 1975).  Other f i r s t person accounts are i n c l u d e d i n books w r i t t e n health professionals  ( F r e e m a n & Simmons, 1 9 6 3 ;  Plummer, Seeman & T h o r n t o n ,  1990;  Jeffries,  Rubin, 1961).  Among t h e s e  f i r s t p e r s o n a c c o u n t s a r e a number w h i c h d e s c r i b e , briefly,  some o f t h e w o r k e x p e r i e n c e s o f t h e  Beers  f i r m f o r w h i c h he h a d w o r k e d p r e v i o u s t o I t was  by t h e m e r e s t  chance  i f only  individual.  (1953) w r i t e s a b o u t h i s d i s c h a r g e f r o m  and h i s o b t a i n m e n t , t h r e e months l a t e r ,  hospital  of a p o s i t i o n w i t h hospitalization.  t h a t I made t h i s  most  f o r t u n a t e b u s i n e s s c o n n e c t i o n . ... T h o u g h p e r s o n s d i s c h a r g e d from mental h o s p i t a l s are u s u a l l y a b l e t o s e c u r e , w i t h o u t much d i f f i c u l t y ,  work as  unskilled  l a b o r e r s , o r p o s i t i o n s where t h e r e s p o n s i b i l i t y i s slight,  i t i s o f t e n n e x t t o i m p o s s i b l e f o r them t o  secure p o s i t i o n s of t r u s t  (p.209)  by  a  Beers i n d i c a t e s t h a t often i t i s d i f f i c u l t p a t i e n t s t o f i n d e m p l o y m e n t b e c a u s e "an i n s a n i t y l e a d s t o d i s t r u s t o f one breakdown"  (p. 208).  He  who  f o r former  inherent dread  has  had  a mental  a l s o s u g g e s t s t h a t an e m p l o y e r s l a c k  of confidence  i n a f o r m e r p a t i e n t i s i n f l u e n c e d by  p a t i e n t ' s own  lack of s e l f - c o n f i d e n c e .  experience,  of  the  In terms of h i s  own  B e e r s f o u n d t h a t a " b r o a d - m i n d e d " e m p l o y e r made  p r o c u r e m e n t o f work l e s s d i f f i c u l t . Stefan occurrence  (1966) d e s c r i b e s t h e o n s e t o f h i s i l l n e s s and o f p a n i c a t t a c k s a t work.  l o s e s h i s j o b as a r e s u l t o f t h e  He  d i s c u s s e s how  i l l n e s s and  f o l l o w i n g a p e r i o d o f h o s p i t a l i z a t i o n he p a r t t i m e j o b w i t h a modest s a l a r y .  He  d e s c r i b e s h i s work w i t h s t u d e n t s  g r e a t e s t c o n t r i b u t i o n was myself,  and  g e t t i n g my  that  i s able to find  work p l a y s a s i g n i f i c a n t r o l e i n h i s a d j u s t m e n t t o life.  he  explains  Stefan suggests  and  a  that  community  writes  mind o f f and  the  "their  away f r o m  t h a t , I t h i n k , i s what a s c h i z o p h r e n i c  needs  a b o v e a l l e l s e " (p. 221) . An  i n t e r e s t i n g account of the experience  schizophrenia  i s provided  d e s c r i b e s how, her  illness,  by C a r o l N o r t h  very e a r l y i n l i f e , she  i s accepted  she  (1987).  became i l l .  into a medical  d e s p i t e e x p e r i e n c i n g h a l l u c i n a t i o n s and she  M.D.  of l i v i n g  She Despite  program,  thought  and  disturbance,  i s a b l e t o complete s e v e r a l terms of the program.  work e x p e r i e n c e  a s an e x t e r n i s d e s c r i b e d b r i e f l y .  r e s u l t o f s i d e e f f e c t s o f h a l d o l , she  with  experiences  As  Her a  r e s t l e s s n e s s and d e s c i b e s how  f a i n t i n g during that job.  The  author  h e r m e d i c a l s t u d i e s a r e i n t e r r u p t e d by a p e r i o d  of h o s p i t a l i z a t i o n . m e d i c a l s c h o o l has  Following treatment,  she  learns t h a t the  b a r r e d her from r e a d m i s s i o n .  motivated t o complete  Highly  her medical t r a i n i n g , North f i n d s  m e d i c a l s c h o o l w i l l i n g t o a c c e p t h e r as a s t u d e n t . concludes with a b r i e f glimpse  i n t o her work as a  The  a story  psychiatric  intern. Professionals'  Accounts  P r o f e s s i o n a l s who  have w r i t t e n about t h e e x p e r i e n c e s  i n d i v i d u a l s w i t h mental therapists,  illness  include existential  s o c i a l s c i e n t i s t s and p s y c h i a t r i s t s .  e x i s t e n t i a l t h e r a p i s t s such as L a i n g  For  (1960), the focus  s t u d y i s t h e e x p e r i e n c e o f l i v i n g w i t h p s y c h o s i s and e x p e r i e n c e s are not a major area of concern. social scientists Gallagher, living  1964;  i n mental  (Caudill, Perrucci,  1958; 1974).  Goffman, 1961;  assignments working  many  Levinson  describe the experience  d i s c u s s i o n o f t h e work e x p e r i e n c e s i n t h e s e  making out i n a mental  of  work  Although  i n s t i t u t i o n s , they provide a very  F o r example, Goffman (1961),  of  & of  limited  institutions.  i n d e s c r i b i n g t h e "ways o f  h o s p i t a l " , d i s c u s s e s how  b e n e f i t p a t i e n t s i n secondary  ways.  work Patients  i n t h e k i t c h e n were i n t h e p o s i t i o n t o g e t e x t r a f o o d  and p a t i e n t s w o r k i n g  i n t h e l a u n d r y were a b l e t o o b t a i n a  more f r e q u e n t  supply of c l e a n c l o t h e s .  However, Goffman  (1961) d o e s n o t d e s c r i b e t h e p a t i e n t s ' e x p e r i e n c e s i n these  in  working  jobs.  Levinson's  and  mental h o s p i t a l l i f e r e s p o n d e d t o by  Gallagher's  (1964) s t u d y d e s c r i b e s  as i t i s e x p e r i e n c e d ,  understood,  and  i n d i v i d u a l p a t i e n t s i n a p u b l i c mental  h o s p i t a l i n M a s s a c h u s e t t s i n 1957. minimally  the  The  a u t h o r s were o n l y  i n t e r e s t e d i n t h e work e x p e r i e n c e s  t h e f a c t t h a t o n l y two  o f t h e i t e m s on a 116  as e v i d e n c e d item  by  role-  conception  inventory describe the i n d i v i d u a l • s perspective  the unpaid  work t h a t p a t i e n t s were e x p e c t e d  hospital.  The  it  work e x p e r i e n c e  t o do  around  i s d i s c u s s e d i n terms of  a f f e c t s i n d i v i d u a l s ' perceptions of patienthood.  authors  f i n d t h a t work p r o v i d e d  otherwise  unusual  Perrucci's social structure  of  the how  The  an e l e m e n t o f n o r m a l c y i n an  daily routine. (1974) m a i n o b j e c t i v e i s t o d e s c r i b e o f a m e n t a l h o s p i t a l and  there are  the only  i n c i d e n t a l r e f e r e n c e s t o t h e p a t i e n t s ' work a s s i g n m e n t s i n t h e d e s c r i p t i o n o f a t y p i c a l day  on a h o s p i t a l w a r d .  i s no r e f e r e n c e t o t h e p a t i e n t s ' p e r s p e c t i v e s o f t h e  There work  assignments. The experiences  studies j u s t presented in hospital.  describe  There i s a p a u c i t y of  d i s c u s s i n g t h e community l i v i n g e x p e r i e n c e s w i t h mental disorders.  individuals'  One  community work e x p e r i e n c e s  of  literature individuals  of the f i r s t books d e s c r i b i n g the of i n d v i d u a l s w i t h mental  d i s o r d e r s was w r i t t e n b y Simmons ( 1 9 6 5 ) . and  Mental I l l n e s s .  Simmons p r e s e n t s  I n h i s b o o k Work  eight case s t u d i e s t o  i l l u s t r a t e t h e ways i n w h i c h o c c u p a t i o n a l c a r e e r s o f s i n g l e and  married  men h a d w i t h s t o o d  i l l n e s s and h o s p i t a l i z a t i o n . end  o r succumbed t o t h e i r  E a c h man was i n t e r v i e w e d a t t h e  o f h i s h o s p i t a l s t a y and d u r i n g t h e p o s t h o s p i t a l p e r i o d .  In presenting the data,  Simmons d i s c u s s e s s e v e r a l a s p e c t s o f  t h e p a r t i c i p a n t s work e x p e r i e n c e s , mobility, and  mental  job satisfaction,  so on.  The a u t h o r s  i n c l u d i n g j o b seeking, job  job s k i l l s ,  commitment t o w o r k  i n t e n t i o n was t o d e s c r i b e t h e  r e l a t i o n s h i p o f m e n t a l i l l n e s s and work, r a t h e r t h a n t h e r e l a t i o n s h i p o f s c h i z o p h r e n i a and work.  One p a r t i c i p a n t i s  d e s c r i b e d as s u f f e r i n g a schizophrenic r e a c t i o n , but t h e diagnosis of the other p a r t i c i p a n t s i s not clear. book does n o t s p e c i f i c a l l y  While the  i l l u s t r a t e work e x p e r i e n c e s  of  i n d i v i d u a l s w i t h s c h i z o p h r e n i a , t h e book i s n o t e w o r t h y , as i t provides  a more d e t a i l e d d i s c u s s i o n o f w o r k e x p e r i e n c e s  do m o s t o t h e r  books.  A s n o t e d , Simmon's b o o k d e s c i b e s A n o t h e r book d e s c r i b e s t h e e x p e r i e n c e s illness  than  (Warren, 1987).  the experiences o f women w i t h  o f men. mental  The i n t e r v i e w s , o n w h i c h W a r r e n ' s  study  i s b a s e d , w e r e c o n d u c t e d b e t w e e n 1957 a n d 19 61, a n d  again  i n 1972 b y a t e a m o f r e s e a r c h e r s  University of California. i n t e r p r e t i v e study  associated with the  The p u r p o s e o f W a r r e n ' s  i s t o provide  s o c i a l and h i s t o r i c a l p r o c e s s  an u n d e r s t a n d i n g  of the  through which c e r t a i n wives i n  the  1 9 5 0 ' s became " m a d w i v e s " .  A s m a l l p a r t o f Warren's  d i s c u s s i o n d e a l s w i t h t h e w o r k e x p e r i e n c e s o f t h e women. women's w o r k e x p e r i e n c e s a r e d e s c r i b e d t h e women o f t h e f i f t i e s  as being  The  typical of  i n t h a t t h e y a l l gave up w o r k i n g  e i t h e r a s s o o n a s t h e y g o t m a r r i e d o r when t h e y h a d t h e i r first child.  A l s o t y p i c a l o f t h e f i f t i e s was t h e h u s b a n d s '  v i e w t h a t t h e y were t h e s o l e p r o v i d e r .  T h e men b e l i e v e d  that  w i v e s who w o r k e d s y m b o l i z e d t h e h u s b a n d ' s i n a d e q u a c y a n d r o l e failure.  Many o f t h e women f a c e d  approval  disapproval,  reluctant  o r a m b i v a l e n c e c o n c e r n i n g t h e i r d e s i r e t o work.  Warren n o t e s t h a t t h e i d e a o f work r e p r e s e n t e d  a fanatsized  way o u t o f f i n a n c i a l a n d e m o t i o n a l t r o u b l e s f o r many o f t h e women.  T h e women, who w e r e a l l o w e d  t o gain  employment,  t h a t t h e i r w o r k was i n t e r r r u p t e d b y h o s p i t a l i z a t i o n . greater  on t h e  I n terms o f t h i s work, Warren  explains that after a period of hospitalization, felt  A  p o r t i o n o f t h e work r e l a t e d d i s c u s s i o n c e n t e r s  work a s h o u s e w i f e and mother.  found  stange and a l i e n i n t h e i r r o l e s .  t h e women  Another p o i n t t h e  a u t h o r makes i s t h a t t h e p e r f o r m a n c e o f h o u s e w o r k a n d c h i l d c a r e assumed i m p o r t a n c e i n a s s e s s m e n t o f t h e womens' mental s t a t e . A n o t h e r c o n t i b u t i o n , d e s c r i b i n g t h e community experiences o f people with mental i l l n e s s , (1981) i n h e r b o o k , Making; i t C r a z y . describes  various  i s made b y E s t r o f f  However, w h i l e s h e  s o c i a l aspects of l i f e  f o r a group o f  i n d i v i d u a l s w i t h m e n t a l d i s o r d e r s , h e r comments a b o u t t h e i r work e x p e r i e n c e s  are very  brief.  I n s u m m a r i z i n g t h e r e f e r e n c e t o work i n t h e e x p e r i e n t i a l literature,  s e v e r a l p o i n t s c a n be made.  accounts provide the best the  i l l n e s s on work.  The f i r s t  person  i n s i g h t i n t o some o f t h e e f f e c t s o f  However, b e c a u s e t h e a u t h o r s '  do n o t  i n t e n d t o s p e c i f i c a l l y d e s c r i b e work, i t t e n d s t o be mentioned b r i e f l y a t best. the experiences hospital  Most p r o f e s s i o n a l s , w r i t i n g  of people with schizophrenia,  experiences  and r e f e r o n l y m i n i m a l l y  about  discuss t o work.  P r o f e s s i o n a l s who w r i t e a b o u t w o r k do n o t f o c u s s p e c i f i c a l l y o n i n d i v i d u a l s w i t h s c h i z o p h r e n i a , a n d p r o f e s s i o n a l s who w r i t e a b o u t i n d i v i d u a l s w i t h s c h i z o p h r e n i a do n o t s p e c i f i c a l l y on work. experiential  Thus, t h e r e  is little  i n the  l i t e r a t u r e t h a t d e s c r i b e s t h e work  of i n d i v i d u a l s with schizophrenia.  Although  focus  experiences  health  p r o f e s s i o n a l s emphasize t h e need f o r s t u d i e s i n w h i c h i n d i v i d u a l s with mental d i s o r d e r s are interviewed d i r e c t l y concerning  t h e i r experiences  (Boker & B r e n n e r , 1987; M c C r a n i e  & M i z e l l , 1978; S t r u p p & H a d l e y , 1 9 7 7 ) , i t i s c l e a r  from t h e  l i t e r a t u r e t h a t h e a l t h p r o f e s s i o n a l s have n e g l e c t e d  this  of study  i n so f a r as i t r e l a t e s  t o t h e q u e s t i o n o f work.  P a t i e n t s p r o v i d e most o f t h e l i t e r a t u r e c o n c e r n i n g i l l n e s s experience t o work  experience.  type  and w i t h i n t h i s t h e r e  i s minimal  the reference  Summary This chapter to  has reviewed  knowledge and understanding  individuals with schizophrenia. l i t e r a t u r e review,  the literature  contributing  o f t h e work e x p e r i e n c e s  of  I n summarizing t h e  the following conclusions  a b o u t t h e c u r r e n t body o f knowledge: t h e r e  c a n b e made  i s strong  evidence  o f t h e i m p o r t a n c e o f work t o t h e m e n t a l h e a l t h o f i n d i v i d u a l s w i t h s c h i z o p h r e n i a ; many i n d i v i d u a l s w i t h s c h i z o p h r e n i a difficulty  i nmaintaining  have  a j o b ; most work r e l a t e d r e s e a r c h  focuses  o n a r e a s o t h e r t h a n i n d i v i d u a l s ' p e r s p e c t i v e s ; a n d no  authors  or researchers  and  decribe the experience  of obtaining  r e t a i n i n g work from t h e p e r s p e c t i v e o f i n d i v i d u a l s w i t h  schizophrena. W h i l e i t i s c l e a r t h a t work p l a y s a i n s t r u m e n t a l r o l e i n maintaining  t h e mental h e a l t h of i n d i v i d u a l s with  schizophrenia, l i t t l e  e f f o r t h a s b e e n made t o u n d e r s t a n d t h e  i n d i v i d u a l ' s own p e r s p e c t i v e o f w h a t i t i s l i k e and  keeping  a j o b when d i a g n o s e d w i t h t h i s  the experience  lookingf o r  illness.  Studying  o f t h e i n d i v i d u a l f r o m h i s / h e r own p e r s p e c t i v e  can  contribute t o optimizing p r o f e s s i o n a l care  of  people.  f o r t h i s group  48 Chapter  3  Method Introduction P h e n o m e n o l o g y was t h e r e s e a r c h m e t h o d u s e d f o r t h i s study.  T h i s m e t h o d was c h o s e n f o r a n s w e r i n g  the research  q u e s t i o n b e c a u s e o f i t s u n i q u e f o c u s on d e s c r i b i n g e x p e r i e n c e as i t i s l i v e d by p e o p l e . the implementation  The f o l l o w i n g c h a p t e r  of the phenomenological  describes  approach  including  p a r t i c i p a n t s e l e c t i o n , d a t a c o l l e c t i o n and a n a l y s i s , ethical considerations.  As a r e s e a r c h method,  and  phenomenology  i s no l e s s r i g o r o u s t h a n o t h e r r e s e a r c h m e t h o d s , h o w e v e r t h e procedures  u s e d by t h e r e s e a r c h e r a r e d i f f e r e n t t h a n  commonly u s e d  (Dzurec  & Abraham,  those  1986) t h e r e f o r e a n  e x p l a n a t i o n o f some o f t h e d i f f e r e n c e s i s p r o v i d e d a s areas  these  are discussed. Selection of P a r t i c i p a n t s In  sampling  q u a l i t a t i v e r e s e a r c h , many o f t h e p r i n c i p l e s o f u s e d i n q u a n t i t a t i v e r e s e a r c h do n o t a p p l y ; f o r  e x a m p l e random s a m p l i n g w o u l d p r o v e i n e f f e c t i v e . phenomenological  In the  m e t h o d , s u b j e c t s a r e s e l e c t e d on t h e b a s i s  o f t h e i r e x p e r i e n c e w i t h t h e phenomena b e i n g s t u d i e d ; t h a t is,  s u b j e c t s a r e c h o s e n who  i n v e s t i g a t i o n a n d who w i l l understanding  are * e x p e r t s ' i n t h e area under facilitate  the researcher's  o f t h e phenomena ( A n d e r s o n ,  1985).  This  process  by w h i c h p a r t i c i p a n t s a r e s e l e c t e d by v i r t u e o f t h e i r  ability  t o a r t i c u l a t e t h e answer t o t h e r e s e a r c h q u e s t i o n i s  49 r e f e r r e d t o as " t h e o r e t i c a l s a m p l i n g "  (Spradley,  1979).  T h e o r e t i c a l or purposive sampling permits s e l e c t i o n i n f o r m a n t s who  w i l l most f a c i l i t a t e t h e development o f  emerging concepts.  T h i s sampling approach  was  b e s t a c h i e v e d t h r o u g h p e o p l e who  v e r b a l l y i n a way  t h a t was  c h a r a c t e r i s t i c s or knowledge which w i l l  retaining  could express i t  understandable.  through t h i s t y p e of sampling d e s i g n have  Subjects chosen specific  add t o , s u p p o r t , o r ,  i n negative cases, r e f u t e the theory, thus enhancing resarcher's understanding Another  difference i n  the  chosen because  a d e s c r i p t i o n o f t h e e x p e r i e n c e o f o b t a i n i n g and w o r k was  of  ( F i e l d & Morse,  the  1985).  the sampling d e s i g n used  for a  q u a l i t a t i v e as opposed t o a q u a n t i t a t i v e method i s t h a t t h e number o f p a r t i c i p a n t s i s s m a l l . research are t y p i c a l l y  "Sample s i z e s i n q u a l i t a t i v e  s m a l l because of t h e l a r g e volume of  v e r b a l d a t a t h a t must be a n a l y z e d and b e c a u s e  qualitative  r e s e a r c h t e n d s t o e m p h a s i z e i n t e n s i v e and p r o l o n g e d c o n t a c t s w i t h s u b j e c t s " ( S a n d e l o w s k i , 1986, the sampling process used  p.31).  Another  f e a t u r e of  i n phenomenology i s t h a t t h e  sample  s i z e i s not d e c i d e d i n advance but i s determined  by  r e s e a r c h needs  initially  (Morse,  1986) .  P a r t i c i p a n t s are  the  chosen because of t h e i r a b i l i t y t o p r o v i d e knowledge understanding of the experience being studied. s u b j e c t s a r e s e l e c t e d u n t i l no new provided  ( S a n d e l o w s k i , 1986).  Additional  i n f o r m a t i o n was  As s u g g e s t e d  being  by M o r s e  a d e q u a c y o f s a m p l i n g i s e v a l u a t e d by t h e q u a l i t y  and  and  (198 6 ) ,  c o m p l e t e n e s s o f i n f o r m a t i o n r a t h e r t h a n by t h e number o f subjects. For t h i s study, s i z e was  purposive  sampling  was  n o t d e t e r m i n e d i n a d v a n c e b u t was  c o m p l e t e n e s s o f d a t a and  used. based  The  sample  on  u l t i m a t e l y t h e s a m p l e s i z e was  small  i n c o m p a r i s o n t o t h e sample s i z e o f most q u a n t i t a t i v e studies. Implementation of the sampling  design  just  began w i t h t h e development of s p e c i f i c c r i t e r i a s e l e c t i o n . This aided the purposive it  circumscribed the population  Criteria The  described for  s e l e c t i o n of s u b j e c t s  borders.  for Selection f o l l o w i n g seven c r i t e r i a provided  s e l e c t i o n of study  participants.  The  the g u i d e l i n e s f o r  p a r t i c i p a n t s had  h a v e b e e n d i a g n o s e d w i t h s c h i z o p h r e n i a f o r a t l e a s t one T h i s was who  as  an  important  criteria  c o u l d speak t o the t o p i c .  to year.  as p a r t i c i p a n t s were r e q u i r e d Therefore,  t h e r e must have  been a s u f f i c i e n t t i m e p e r i o d f o r the p a r t i c i p a n t s t o have experienced  what i t i s l i k e t o t r y t o o b t a i n and/or  w o r k when one  has  P a r t i c i p a n t s had sixty-five.  As  been d i a g n o s e d w i t h  t h e s t u d i e d c o n c e r n e d a d u l t s who  i n d i v i d u a l s were not The  schizophrenia.  t o be b e t w e e n t h e a g e s o f n i n e t e e n  been t r y i n g t o o b t a i n work o r had  retain  been w o r k i n g ,  had  and recently  retired  included.  t h i r d c r i t e r i a was  t h a t p a r t i c i p a n t s had  acknowledge the d i a g n o s i s of s c h i z o p h r e n i a .  to  The p a r t i c i p a n t s  51 had  t o provide the p e r s p e c t i v e of i n d i v i d u a l s w i t h  s c h i z o p h r e n i a , t h e r e f o r e i t was informed  o f t h e d i a g n o s i s and  A n o t h e r c r i t e r i a was  important  d i d not deny t h e  t h a t t h e p a r t i c i p a n t s had  p h y s i c a l l y a c c e s s i b l e to the researcher. p a r t i c i p a n t s had District. w o u l d be data,  to live  i n the Greater  S i n c e t h e r e s e a r c h e r , who conducting  i t was  t h a t t h e y had  a l l the  diagnosis. to  be  For t h i s reason a l l Vancouver  Regional  speaks only E n g l i s h ,  i n t e r v i e w s and  analyzing a l l the  e s s e n t i a l t h a t the p a r t i c i p a n t s speak E n g l i s h .  I n d i v i d u a l s w i t h s c h i z o p h r e n i a may  experience  delusions  o r o t h e r p s y c h o t i c symptoms t h a t i n t e r f e r e w i t h t h e to  c o m m u n i c a t e r a t i o n a l l y and  to  be  able to provide  Therefore  an  coherently.  r a t i o n a l and  important  c r i t e r i a was  coherent  ability  P a r t i c i p a n t s had responses.  that participants did  h a v e symptoms t h a t i n t e r f e r e d w i t h t h e a b i l i t y t o g i v e a r t i c u l a t e d e s c r i p t i o n of the experience. was  t h a t p a r t i c i p a n t s had  unsuccessful  experience  t o have had  The  final  i n d i v i d u a l s who  had  were e x c l u d e d .  I was  i n d i v i d u a l had  an  criteria  i n o b t a i n i n g and/or r e t a i n i n g work i n words,  n e v e r a t t e m p t e d t o o b t a i n o r r e t a i n work i n t e r e s t e d i n work e x p e r i e n c e s  t o compete w i t h t h e g e n e r a l  t h e r e f o r e a t l e a s t some o f t h e had  hot  recent, s u c c e s s f u l or  s e t t i n g s other than s h e l t e r e d workshops. I n other  the  been  i n which  population  i n d i v i d u a l ' s work  experience  t o have been i n s e t t i n g s o t h e r t h a n s h e l t e r e d workshops.  52 Subject  Recruitment  P a r t i c i p a n t s w e r e n o t known p r e v i o u s l y t o t h e researcher.  Initially,  subject recruitment occurred  through  the a s s i s t a n c e o f t h e group, F r i e n d s o f S c h i z o p h r e n i c s (F.O.S.).  A f t e r o b t a i n i n g a p p r o v a l from t h e r e g i o n a l o f f i c e  o f F.O.S., t h e r e s e a r c h e r c o n t a c t e d v a r i o u s F.O.S. c h a p t e r s  the presidents of  i n t h e Vancouver area,  i n f o r m a t i o n about t h e s t u d y and r e q u e s t e d  provided  permission t o  attend t h e v a r i o u s chapter meetings f o r t h e purpose o f d i s c u s s i n g t h e study. and  A l l c h a p t e r p r e s i d e n t s gave  t h e researcher attended  t h e meetings,  permission  gave an e x p l a n a t i o n  o f t h e s t u d y a n d e n l i s t e d t h e members' a s s i s t a n c e i n i d e n t i f y i n g s u i t a b l e c a n d i d a t e s . Members w e r e a s k e d t o identify  i n d i v i d u a l s who met t h e c r i t e r i a ,  ask these  i n d i v i d u a l s i f t h e y w o u l d be i n t e r e s t e d i n p a r t i c i p a t i n g i n the study and g i v e i n t e r e s t e d i n d i v i d u a l s a l e t t e r o f introduction form  (AppendixA) and a consent  f o r telephone  contact  (Appendix B ) . As a c o n s e q u e n c e o f t h i s p r o c e d u r e ,  r e t u r n e d t h e form and two directly.  others telephoned  the researcher  No o t h e r c a n d i d a t e s c o n t a c t e d t h e r e s e a r c h e r  f o l l o w i n g t h i s recruitment through p o s s i b l e reasons people  two i n d i v i d u a l s  F.O.S.. T h e r e a r e s e v e r a l  f o r t h e poor response.  a t t h e F.O.S. m e e t i n g s ,  From t a l k i n g  i t was a p p a r e n t  t h e i r f a m i l y members who h a d s c h i z o p h r e n i a w e r e r e c e i v i n g treatment  with  t h a t many o f currently  and/or were unemployed. W h i l e  those i n  53 a t t e n d a n c e a t F.O.S. w e r e v e r y e n t h u s i a s t i c a b o u t t h e s t u d y , t h e y i n d i c a t e d t h a t t h e i r f a m i l y members may too  embarassed  to participate.  be t o o i l l o r  This latter point  was  v a l i d a t e d by some o f t h e p a r t i c i p a n t s i n t h e s t u d y . T h e y mentioned for  t h a t t h e y knew o t h e r p e o p l e who  met  the  s e l e c t i o n , but t h e s e p e o p l e were embarassed  criteria  about  unemployed and d e c l i n e d t o p a r t i c i p a t e .  In addition,  p a r t i c i p a n t s s a i d t h a t , as a consequence  of having  s c h i z o p h r e n i a , t h e y f o u n d i t v e r y d i f f i c u l t t o meet people.  Some p o t e n t i a l c a n d i d a t e s may  stressful to participate.  being several  new  have found i t t o o  Another reason f o r the  poor  r e s p o n s e was  s u g g e s t e d i n t h e comments o f a woman whose  d a u g h t e r was  interested i n participating.  T h i s mother  e x p r e s s e d c o n c e r n t h a t p a r t i c i p a t i o n i n t h e s t u d y may u p s e t t i n g f o r her daughter. the  difficulty  too  When t h e r e s e a r c h e r m e n t i o n e d  i n r e c r u i t i n g subjects t o another  an i n t e r e s t i n g r e s p o n s e  be  participant,  ensued.  I w o u l d n ' t h a v e b e e n a b l e t o do i t t h e n [when y o u n g e r a n d more i l l ] s i m p l y b e c a u s e I w o u l d h a v e h a d t o b e e n g e t t i n g s o m e t h i n g o u t o f i t , b e c a u s e I was s o n e e d y . I t h i n k i f y o u w e r e ' o f f e r i n g e v e r y o n e who d i d t h i s f i f t y bucks or something you'd get a l o t o f people w i l l i n g t o do i t . B u t f o r me t h e r e w a r d i s t h a t p e r h a p s I ' v e e d u c a t e d y o u i n some way a n d y o u ' l l go on a n d e d u c a t e o t h e r n u r s e s , s o t h a t ' s r e w a r d f o r me. W h e r e a s when y o u ' r e s t i l l c o n f u s e d and y o u ' r e s t i l l trying to find y o u r p l a c e and y o u ' r e n o t r e a l l y c o n f i d e n t o r s e c u r e i n who y o u a r e , i t s h a r d t o g i v e , a n d i t s l i k e y o u have t o be g e t t i n g s o m e t h i n g f r o m i t o r i t s l i k e "why do it?" Because approach,  of the inadequate response from t h i s r e c r u i t m e n t  I d e c i d e d t o c o n t a c t o t h e r community  organizations  i n order t o e n l i s t further participants.  S t a f f persons  t h e f o l l o w i n g o r g a n i z a t i o n s were c o n t a c t e d : C o a s t  at  Foundation,  P i o n e e r H o u s e , K e t t l e F r i e n d s h i p S o c i e t y , New V i e w S o c i e t y and  Mental  Patients Association.  As w e l l ,  one  psychiatrist  i n p r i v a t e p r a c t i c e was c o n t a c t e d . The s t a f f p e o p l e  and t h e  p h y s i c i a n were g i v e n i n f o r m a t i o n about t h e s t u d y .  They were  asked  and g i v e  to identify  i n d i v i d u a l s who met t h e c r i t e r i a  them t h e l e t t e r o f i n t r o d u c t i o n and t h e c o n s e n t c o n t a c t form.  Following these e f f o r t s ,  contacted the researcher—one consent  f o r telephone  t h r e e more  v i a telephone  candidates  and two v i a t h e  form.  A s e a c h one o f t h e s e v e n c a n d i d a t e s c o n t a c t e d t h e r e s e a r c h e r , t h e y were g i v e n f u r t h e r i n f o r m a t i o n about t h e p u r p o s e s a n d b e n e f i t s o f t h e s t u d y a n d a b o u t t h e ways r i g h t s w o u l d be p r o t e c t e d .  their  Also a t t h i s time, the researcher  v a l i d a t e d t h a t t h e i n d i v i d u a l s d i d meet t h e s e l e c t i o n criteria.  A l l persons  all  t o p a r t i c i p a t e i n the study.  agreed  c o n t a c t e d met t h e s t u d y c r i t e r i a  and  F o l l o w i n g a s e r i e s of i n t e r v i e w s w i t h t h e seven p a r t i c i p a n t s , t h r e e more p a r t i c i p a n t s w e r e r e c r u i t e d .  A  f r i e n d o f one o f t h e s u b j e c t s i n d i c a t e d i n t e r e s t i n t h e study.  A s h e met t h e c r i t e r i a  f o r p a r t i c i p a t i o n a n d was  v i e w e d a s b e i n g a v a l u a b l e c o n t r i b u t o r , he became a for participation.  candidate  He was v i e w e d a s a v a l u a b l e c o n t r i b u t o r  b e c a u s e h e was m a r r i e d a n d t h e r e f o r e c o u l d p r o v i d e a p e r s p e c t i v e d i f f e r e n t from t h a t of t h e other p a r t i c i p a n t s  who  w e r e a l l u n m a r r i e d . The r e s e a r c h e r w i t h i n f o r m a t i o n about t h e study  provided  t h e candidate  a n d t h e ways h i s r i g h t s  would be p r o t e c t e d , and answered h i s q u e s t i o n s study.  about t h e  He a g r e e d t o b e i n t e r v i e w e d a n d became t h e e i g h t h  participant. I n a d d i t i o n , two o t h e r p a r t i c i p a n t s were r e c r u i t e d . Only t w o women h a d b e e n i n t e r v i e w e d u p t o t h a t p o i n t a n d t h e r e s e a r c h e r w a n t e d t o e n s u r e t h a t t h e f e m a l e p e r s p e c t i v e was adequately  represented.  The r e s e a r c h e r  asked t h e female  p a r t i c i p a n t s a n d a s t a f f member a t o n e o f t h e c o m m u n i t y o r g a n i z a t i o n s t o i d e n t i f y women who m i g h t b e i n t e r e s t e d i n participating candidates  i n t h e study.  contacted  As a r e s u l t ,  the researcher.  t w o more f e m a l e  The c a n d i d a t e s  were  g i v e n t h e same i n f o r m a t i o n a b o u t t h e p u r p o s e s a n d b e n e f i t s o f the  study  a n d a b o u t t h e ways t h e i r r i g h t s w o u l d b e p r o t e c t e d .  The c a n d i d a t e s participate. to ten.  met t h e s e l e c t i o n c r i t e r i a  and agreed t o  T h i s b r o u g h t t h e t o t a l number o f p a r t i c i p a n t s  By t h e t i m e I c o m p l e t e d t h e i n t e r v i e w s w i t h  these  t e n p a r t i c i p a n t s , no new i n f o r m a t i o n was b e i n g g i v e n a n d t h e r e f o r e no f u r t h e r s u b j e c t s were r e c r u i t e d . Characteristics ofParticipants The f o l l o w i n g d i s c u s s i o n p r o v i d e s characteristics of theparticipants.  a description of the "The q u a l i t a t i v e  r e s e a r c h e r must c l e a r l y d e l i n e a t e t h e c h a r a c t e r i s t i c s o f t h e p a r t i c i p a n t s and t h e i r p l a c e i n t h e s o c i a l Information  setting.  may c h a n g e o v e r t i m e . . . K n o w i n g t h e c i r c u m s t a n c e s  and t h e i n f o r m a n t h e l p s t o a c c o u n t f o r d i s a g r e e m e n t s i n d i f f e r e n t a c c o u n t s o f t h e same c u l t u r e "  ( F i e l d & Morse, 1985,  p.94). A indicated, a total of ten individuals, f o u r women p a r t i c i p a t e d  s i x men a n d  i n t h e study. P a r t i c i p a n t s ranged i n  a g e f r o m 24 t o 43 w i t h a n a v e r a g e a g e o f 3 3 .  A l l were  E n g l i s h s p e a k i n g and a l l b u t one were b o r n i n Canada. i n d i v i d u a l n o t b o r n i n C a n a d a was a r e c e n t i m m i g r a n t Britain.  The from  The m a j o r i t y , e i g h t , were s i n g l e and n e v e r m a r r i e d .  One m a l e p a r t i c i p a n t was d i v o r c e d a n d a n o t h e r m a l e p a r t i c i p a n t was m a r r i e d . Academic achievement u n i v e r s i t y degree.  ranged from grade e i g h t t o a  F i v e p a r t i c i p a n t s had completed  h i g h s c h o o l and h a d gone on t o t a k e v a r i o u s c o u r s e s b u t h a d not completed any p a r t i c u l a r program.  One p e r s o n h a d  r e c e n t l y r e c e i v e d a c o l l e g e diploma and t h r e e people had, s e v e r a l years p r e v i o u s l y , obtained u n i v e r s i t y degrees. t e r m s o f e m p l o y m e n t , f o u r o f t h e men g e n e r a l w o r k f o r c e , o n e was u n e m p l o y e d  In  were w o r k i n g i n t h e a n d o n e was w o r k i n g a  c o u p l e hours a day a t a s h e l t e r e d workshop.  Of t h e f o u r  women, t w o w e r e w o r k i n g i n p a i d p a r t - t i m e e m p l o y m e n t , a t h i r d was e n g a g e d i n v o l u n t e e r w o r k a n d a f o u r t h was u n e m p l o y e d a t the time.  A l l o f t h e unemployed i n d i v i d u a l s ,  as w e l l as t h e  person i n v o l v e d w i t h t h e s h e l t e r e d workshop, had p r e v i o u s l y worked i n t h e g e n e r a l w o r k f o r c e , w i t h t h e most r e c e n t j o b o c c u r r i n g f r o m s e v e r a l months t o s e v e r a l y e a r s p r e v i o u s l y .  C u r r e n t o c c u p a t i o n s o f t h e employed i n d i v i d u a l s i n c l u d e d o f f i c e worker, v o c a t i o n a l c o u n s e l l o r , s a l e s c l e r k , s e r v i c e clerk,  carpenter,  and c o n t r a c t  estimator.  Neither  of the  people w i t h u n i v e r s i t y degrees nor t h e i n d i v i d u a l w i t h t h e d i p l o m a were engaged i n work r e l a t e d t o t h e i r c o u r s e o f study. The  number o f y e a r s s i n c e d i a g n o s i s  twenty-two years;  r a n g e d from one t o  however p a r t i c i p a n t s o f t e n mentioned  symptoms h a d b e g u n s e v e r a l y e a r s p r i o r t o d i a g n o s i s .  that  The  o n s e t o f symptoms r a n g e d f r o m t w o t o t e n y e a r s p r i o r t o t h e time of actual diagnosis. consideration during  This  information  was t a k e n  into  t h e i n t e r v i e w as a l l p a r t i c i p a n t s  r e l a t e d t h e i r work e x p e r i e n c e s from t h e t i m e o f i l l n e s s r a t h e r than from time o f a c t u a l d i a g n o s i s . t h e p a r t i c i p a n t s were p r e s c r i b e d  onset  A l l b u t one o f  a n t i p s y c h o t i c m e d i c a t i o n and  many s e l f - r e g u l a t e d t h e d o s a g e . Six o f t h e p a r t i c i p a n t s l i v e d alone,  and t h e  accommodations i n c l u d e d  a h o u s e k e e p i n g room, a r e n t a l  apartment, and a boat.  One p a r t i c i p a n t l i v e d  home.  Two i n d i v i d u a l s s h a r e d a h o u s e w i t h  married p a r t i c i p a n t lived  i n a group  f r i e n d s and t h e  i n an apartment w i t h h i s  wife.  F i v e p e o p l e h a d s u p p o r t e d h o u s i n g ; t h a t i s , t h e y p a i d one third of their  income f o r r e n t .  58 T h i s g r o u p o f p a r t i c i p a n t s may be d e s c r i b e d a s w e l l educated  and h i g h l y m o t i v a t e d .  been i l l  f o r s e v e r a l years b u t had entered a p e r i o d i n which  they f e l t  "more i n c o n t r o l " ,  Most o f t h e p a r t i c i p a n t s had  " b e t t e r than I've been i n  y e a r s " , and " f e e l i n g p r e t t y good about t h i n g s " .  Thus t h e  s a m p l e r e p r e s e n t s a s u b - g r o u p o f o l d e r , h e a l t h i e r a n d more motivated  individuals with schizophrenia. Data C o l l e c t i o n and A n a l y s i s  Data c o l l e c t i o n and d a t a a n l a y s i s f o r t h e phenomenological  method d i f f e r  quantitative investigation.  from approaches  used i n  One d i f f e r e n c e i s t h a t t h e  method i s n o t a l i n e a r p r o c e s s , r a t h e r d a t a c o l l e c t i o n and data a n l a y s i s proceed the other.  s i m u l t a n e o u s l y w i t h each  Another d i f f e r e n c e l i e s  for data c o l l e c t i o n .  influencing  i n the strategies  used  I n phenomenology, s e v e r a l s t r a t e g i e s  c a n be u s e d f o r d a t a c o l l e c t i o n :  asking subjects t o write  down t h e i r e x p e r i e n c e s , o b s e r v i n g s u b j e c t s d u r i n g t h e experience,  or conducting  lenghty interviews i n which  s u b j e c t s a r e encouraged t o d e s c r i b e t h e i r experience t h e i r own p e r s p e c t i v e .  from  T h i s v e r b a l d a t a s h o u l d be c o l l e c t e d  i n a r e l a x e d a t m o s p h e r e a n d s u f f i c i e n t t i m e s h o u l d be p r o v i d e d t o f a c i l i t a t e a complete d e s c r i p t i o n by t h e s u b j e c t (Burns  & Grove, 1987).  The d a t a g a t h e r e d  are not l i m i t e d t o observable  using this  method  facts but include a l l available  59 phenomena s u c h had  as t h e s u b j e c t i v e meanings t h a t t h e  f o r the p a r t i c i p a n t The  the  (Omery, 1 9 8 3 ) .  researcher i n v e s t i g a t e s subjects' consciousness  w o r l d by b r a c k e t i n g ( s u s p e n d i n g  experience),  intuiting  analyzing  becoming absorbed  been determines  a n s w e r s t o q u e s t i o n s a b o u t t h e r e s e a r c h phenomenon  initially  Questions  i n t h e s t u d y may  t h a t t h e y do n o t a d d r e s s (Dzurec In  & A b r a h a m 1986,  planned  change as t h e r e s e a r c h e r  (Appendix  d a t a s h e e t was  seven p a r t i c i p a n t s .  C).  During  of  the  to sign a written  Once w r i t t e n c o n s e n t  was  A brief  obtained,  demographic  completed at the beginning of the i n t e r v i e w  a d d i t i o n a l d e m o g r a p h i c d a t a was  course  subjects  t h i s s t u d y , d a t a c o l l e c t i o n began w i t h a s e r i e s  a u d i o - t a p i n g o f t h e i n t e r v i e w began.  and  finds  p.58).  i n t e r v i e w s , p a r t i c i p a n t s were asked  consent  by  interacting  t h e r e a l i t y d e s c r i b e d by  interviews with the f i r s t first  an  expereince  As a p a r t i c i p a n t o b s e r v e r , t h e r e s e a r c h e r  u n o b t r u s i v e l y w i t h them.  of the inteview.  an  in it),  d e s c r i b i n g ( c o n v e y i n g what has  e s t a b l i s h i n g r a p p o r t w i t h s u b j e c t s and  of  about  from  ( i d e n t i f y i n g r e c u r r i n g elements i n the  r e t o s p e c t ) , and  found).  w h a t i s known  (viewing the experience  u n r e s t r i c t e d p e r s p e c t i v e and  in  experience  obtained during  At the f i r s t  the  i n t e r v i e w , broad  q u e s t i o n s t h a t d e f i n e t h e domain a r e asked  (Field  & Morse,  1985).  Data r e l a t e d t o t h e r e s e a r c h q u e s t i o n were  through  a s e t of broad t r i g g e r questions  elicited  (Appendix  provided a general structure f o r the i n i t i a l  interviews.  i n t e r v i e w s w e r e n o t s t a n d a r d i z e d ; r a t h e r t h e more q u e s t i o n s on t h e i n t e r v i e w g u i d e were u s e d t o  E) t h a t The  specific  facilitate  e x p l o r a t i o n o f c o n t e n t n o t o t h e r w i s e d e s c r i b e d by t h e informants.  W i t h some p a r t i c i p a n t s , a b r o a d  was s u f f i c i e n t t o e l i c i t experience.  question  a lengthy description of the  W i t h o t h e r i n d i v i d u a l s , more t r i g g e r  were used t o i n i t i a t e All  opening  questions  d e s c r i p t i o n of c e r t a i n content  areas.  p a r t i c i p a n t s a p p e a r e d t o be c o m f o r t a b l e w i t h t h e  f a c t t h a t t h e y were b e i n g t a p e - r e c o r d e d .  A t no t i m e d i d a n y  p a r t i c i p a n t r e q u e s t t h a t i t be t u r n e d o f f o r t h a t i n f o r m a t i o n be d e l e t e d .  On one o c c a s i o n , when t h e i n t e r v i e w h a d e n d e d ,  t h e i n f o r m a n t remembered a d d i t i o n a l i n f o r m a t i o n t h a t s h e w a n t e d t o r e l a y a n d t h e t a p e - r e c o r d i n g was r e s t a r t e d .  On  s e v e r a l o c c a s i o n s , p a r t i c i p a n t s made p e r t i n e n t comments a s t h e i n t e r v i e w e r was l e a v i n g . researcher's thoughts  T h e s e comments, a s w e l l a s t h e  and i m p r e s s i o n s , were r e c o r d e d  in field  n o t e s t h a t w e r e w r i t t t e n f o l l o w i n g e a c h i n t e r v i e w . The recorded  i n t e r v i e w s were t h e n t r a n s c r i b e d v e r b a t i m .  t r a n s c r i p t s and t h e f i e l d n o t e s t  study.  \  tape-  These  formed t h e d a t a base f o r t h i s  Congruent w i t h  the phenomenological approach,  data  a n a l y s i s and d a t a c o l l e c t i o n proceeded s i m u l t a n e o u s l y .  In  o t h e r w o r d s a s , e a c h one o f t h e s e i n t e r v i e w t o o k p l a c e ,  a  b e g i n n i n g a n a l y s i s was d o n e . the  researcher  analyis.  As t h e i n t e r v i e w s  was e n g a g e d i n  progresssed,  b o t h d a t a c o l l e c t i o n and d a t a  The a n a l y t i c p r o c e s s h a d a n i m p a c t o n d a t a  c o l l e c t i o n as i t guided t h e focus of e x p l o r a t i o n . The t r a n s c r i p t s w e r e s u b j e c t e d  to analyis using  a method  d e v e l o p e d by C o l a i z z i (1978). A l l o f t h e p a r t i c i p a n t s ' d e s c r i p t i o n s w e r e r e a d i n o r d e r t o make s e n s e o f them. S i g n i f i c a n t phrases or sentences that d i r e c t l y pertained the  i n v e s t i g a t e d phenomenon w e r e e x t r a c t e d .  The m e a n i n g o f  e a c h s i g n i f i c a n t s t a t e m e n t was f o r m u l a t e d a n d o r g a n i z e d c l u s t e r s o f themes.  These c l u s t e r s o f themes were  back t o t h e o r i g i n a l d e s c r i p t i o n s and  t o n o t e any d i s c r e p a n c i e s  The r e s u l t s w e r e i n t e g r a t e d the  investigated topic.  to  into  refered  i n o r d e r t o v a l i d a t e them  among t h e v a r i o u s  clusters.  i n t o an e x h a u s t i v e d e s c r i p t i o n o f  The f i n a l  step  i n Colazzi's  method  i s t o r e t u r n t o each p a r t i c i p a n t and v a l i d a t e t h e f i n d i n g s . All  seven o f t h e p a r t i c i p a n t s were a v a i l a b l e f o r t h i s  round of i n t e r v i e w s .  During t h e second round of  the  researcher  validated the findings, c l a r i f i e d  and  asked f u r t h e r q u e s t i o n s as necessary.  second  interviews, information,  62 Following t h i s series of interviews, the three a d d i t i o n a l p a r t i c i p a n t s were r e c r u i t e d . participants,  one i n t e r v i e w was c o m p l e t e d .  i n t e r v i e w t o o k t h e same f o r m a t conducted  For each of these Initially,  as t h e f i r s t i n t e r v i e w  w i t h each o f t h e other p a r t i c i p a n t s .  words, w r i t t e n consent  the  In other  was o b t a i n e d p r i o r t o o n s e t  of the  t a p e - r e c o r d i n g , t h e i n t e r v i e w q u e s t i o n s served as a g e n e r a l guide,  and i n f o r m a n t s were p r o v i d e d t i m e t o d e s c r i b e  experience.  their  A f t e r t h e p a r t i c i p a n t had t o l d h i s / h e r s t o r y ,  the r e s e a r c h e r d i s c u s s e d t h e f i n d i n g s obtained from t h e initial  a n a l y s i s i n order t o v a l i d a t e the  experience. analyzed While  The t a p e d  fit'  with  their  i n t e r v i e w s were t r a n s c r i b e d and  i n t h e same manner a s t h e p r e v i o u s i n t e r v i e w s .  no new i n f o r m a t i o n was o f f e r e d i n t h e p a r t i c i p a n t s '  s t o r i e s , t h e i r accounts results.  provided v a l i d a t i o n of the a n a l y t i c a l  Thus t h e s e t h r e e a d d i t i o n a l i n t e r v i e w s r e i n f o r c e d  the researcher's confidence and  x  i n the completeness of the data  the v a l i d i t y of the findings.  The c o m p l e t e p r o c e s s  of  d a t a c o l l e c t i o n a n d a n a l y s i s t o o k p l a c e o v e r a f o u r month period. In  any t y p e o f r e s e a r c h t h e i s s u e s o f o b j e c t i v i t y  subjectivity, reliability terms of o b j e c t i v i t y , not t o determine  and  a n d v a l i d i t y m u s t be a d d r e s s e d .  In  t h e purpose o f q u a l i t a t i v e research i s  o b j e c t i v e l y what happened b u t r a t h e r t o  objectively report the participants perceptions Morse, 1985). to  F o r t h i s r e a s o n e x t e n s i v e measures were  v a l i d a t e with p a r t i c i p a n t s that t h e study's  accurately describes their perceptions. the a n a l y s i s w i t h p a r t i c i p a n t s , they everything", anything  (Field & taken  report  During  t h e review of  commented, " t h a t  covers  " y a , t h a t sounds l i k e i t " , " I don't have  e l s e t o add",  " y o u p r e t t y w e l l summed i t up i n y o u r  summary t h e r e . " a n d s o o n . Subjectivity from f i r s t l y  i n q u a l i t a t i v e research  "may b e d e r i v e d  the researcher-as-an-instrument,  or secondly,  from t h e q u a l i t y o f t h e evidence o r t h e s u b j e c t i v e nature o f the research t o p i c "  ( F i e l d & Morse 1985, p.115).  That i s ,i n  q u a l i t a t i v e r e s e a r c h t h e amount a n d q u a l i t y o f d a t a i s dependant on t h e a b i l i t y  of the researcher  to establish  rapport  and g a i n t h e t r u s t o f t h e informants  1985).  For t h i s reason,  ( F i e l d & Morse  e f f o r t s w e r e made t o d e v e l o p a  r e l a x e d atmosphere and t o e s t a b l i s h r a p p o r t w i t h p a r t i c i p a n t s during the i n i t a l  phase o f t h e i n t e r v i e w .  developed w i t h p a r t i c i p a n t s as evidenced to  R a p p o r t was by t h e i r w i l l i n g n e s s  s h a r e t h o u g h t s a n d f e e l i n g s a n d b y comments s u c h a s " i t s  g o o d t o h a v e someone t o t a l k t o " a n d " I w o u l d n ' t b e a b l e t o t a l k t o many p e o p l e a b o u t t h i s . " said that the researcher  Participants  spontaneously  could return for a d d i t i o n a l v i s i t s  64 or telephone they  as n e c e s s a r y .  Several people  f e l t good about b e i n g a b l e t o  indicated that  help.  R e l i a b i l i t y c a n be a f f e c t e d by t h e s a m p l i n g t h e s o c i a l c o n t e x t and gathered  the c o n d i t i o n s under which data  ( F i e l d & Morse, 1985).  a l r e a d y been addressed. gathered  procedures,  The  Sampling p r o c e d u r e s have  c o n d i t i o n s under which data  include the f o l l o w i n g .  I n t e r v i e w s ranged from  h o u r t o t h r e e h o u r s and w e r e c o n d u c t e d , w i t h one a t t h e p a r t i c i p a n t s ' homes.  One  conducted i n p r i v a t e . t h e r e was  ample t i m e  researcher.  mutually  one  e x c e p t i o n was  one  place  convenient  A l l i n t e r v i e w s were  W i t h t h e e x c e p t i o n o f one  occasion,  f o r t h e i n t e r v i e w so p a r t i c i p a n t s were  n o t h u r r i e d and w e r e a b l e t o t a l k a s l o n g a s t h e y The  were  exception,  s e t of i n t e r v i e w s took  i n a room a t a l o c a l h o s p i t a l a s i t was f o r t h e p a r t i c i p a n t and  are  t h a t a p a r t i c i p a n t had  wanted.  to leave  an  i n t e r v i e w a f t e r an h o u r i n o r d e r t o a t t e n d t o some p e r s o n a l business.  H o w e v e r , on t h e s e c o n d i n t e r v i e w w i t h  this  p a r t i c i p a n t , t h e r e w e r e no t i m e c o n s t r a i n t s . Validity  i s t h e o v e r a l l c o n c e p t r e f e r i n g t o how  good  answer a s t u d y y i e l d s , t h a t i s , does t h e answer p r o v i d e d the research represent r e a l i t y ? of chapter  Throughout the  a l w a y s on t h e r e s e a r h c e r t o show how  "The  by  presentation  four, the f i n d i n g s are i l l u s t r a t e d w i t h  excerpts from the p a r t i c i p a n t s ' accounts.  an  verbatim  onus i s  i n t e r p r e t a t i o n s of  the  data are a r r i v e d a t . accounts  I t i s f o r t h i s reason t h a t verbatim  a r e used from p a r t i c i p a n t s i n a study t o  s u b s t a n t i a t e t h e c l a i m s t h a t t h e r e s e a r c h e r makes a b o u t t h e data"  (Anderson  a vivid  & Elfert  1989, p.737).  The a c c o u n t s  provide  i l l u s t r a t i o n of the researcher's description ofthe  p a r t i c i p a n t s e x p e r i e n c e and enables t h e r e a d e r t o a u d i t t h e "fit"  o f t h e d e s c r i p t i o n w i t h t h e o r i g i n a l data from which i t  was d e r i v e d ( S a n d e l o w s k i ,  1986).  E t h i c s a n d Human R i g h t s P r i o r a p p r o v a l f o r t h i s s t u d y was o b t a i n e d f r o m t h e U n i v e r s i t y o f B r i t i s h Columbia's S c r e e n i n g Committee f o r Research  I n v o l v i n g Human S u b j e c t s .  The r i g h t s o f t h e  p a r t i c i p a n t s were p r o t e c t e d i n t h e f o l l o w i n g ways: 1)  A d e s c r i p t i o n o f t h e s t u d y and an e x p l a n a t i o n o f t h e  r e s e a r c h e r ' s e x p e c t a t i o n s were g i v e n t o p a r t i c i p a n t s p r i o r t o o b t a i n i n g consent 2)  (see Appendix A ) .  W r i t t e n c o n s e n t was o b t a i n e d f r o m a l l p a r t i c i p a n t s  prior  t o i n t e r v i e w i n g (see Appendix C ) . 3)  P a r t i c i p a n t s were i n f o r m e d t h a t n o n - p a r t i c i p a t i o n i n t h e  s t u d y w o u l d i n no way j e o p a r d i z e f u r t h e r c o m m u n i t y o r hospital 4)  care.  P r i o r t o each i n t e r v i e w , p a r t i c i p a n t s were reminded o f  their right not t o participate,  and were i n f o r m e d t h a t t h e y  c o u l d withdraw from t h e study a t any t i m e .  66 5)  P a r t i c i p a n t s were i n f o r m e d t h a t t h e t a p e d  interview  m a t e r i a l w o u l d be k e p t anonymous a n d c o n f i d e n t i a l , a n d t h a t t a p e s w o u l d be e r a s e d u p o n c o m p l e t i o n o f t h e s t u d y . 6)  P a r t i c i p a n t s were i n f o r m e d t h a t t r a n s c r i p t s and  w r i t t e n m a t e r i a l w o u l d n o t i n c l u d e a n y names o r i d e n t i f y i n g factors. 7)  P a r t i c i p a n t s w e r e i n f o r m e d t h a t t h e r e a r e no  risks  involved  expected  i n p a r t i c i p a t i o n i n the study. Summary  T h i s c h a p t e r has d e s c r i b e d The p h e n o m e n o l o g i c a l  v i r t u e of t h e i r a b i l i t y  P a r t i c i p a n t s were s e l e c t e d to describe  subjects p a r t i c i p a t e d i n a t o t a l of seventeen  interviews  of transcribed  f i e l d notes w r i t t e n f o l l o w i n g each  analysis occurred concurrently followed  Ten over  period.  The d a t a b a s e was c o m p r i s e d and  by  the experience of looking  a j o b a n d w o r k i n g when one h a s s c h i z o p h r e n i a .  a f o u r month  study.  method p r o v i d e d d i r e c t i o n f o r d a t a  c o l l e c t i o n and a n a l y s i s .  for  t h e method f o r t h i s  t h e format developed  audiotapes  interview.  Data  with data c o l l e c t i o n by C o l a z z i .  and  The a n a l y t i c  p r o c e s s h a d a n i m p a c t on d a t a c o l l e c t i o n a s i t g u i d e d t h e focus of exploration.  The r e s u l t o f t h i s p r o c e s s i s t h e  d e s c r i p t i o n o f t h e e x p e r i e n c e and t h e meaning o f t h e  67 e x p e r i e n c e o f o b t a i n i n g and r e t a i n i n g work f r o m t h e perspective  of i n d i v i d u a l s with schizophrenia;  of which are presented i n Chapter  4.  the accounts  68 Chapter 4 The I n d i v i d u a l s '  Accounts  Introduction The a c c o u n t s o f t h e p a r t i c i p a n t s the description  of the experience of  and r e t a i n i n g work t h a t w i l l  obtaining  be p r e s e n t e d i n t h i s c h a p t e r .  Each p a r t i c i p a n t d e s c r i b e d a s t o r y individual differences.  i n t h i s s t u d y make up  i n w h i c h t h e r e w e r e some  F o r example, t h e age o f i l l n e s s s  o n s e t , t h e t y p e a n d s e v e r i t y o f symptoms, a n d t h e t y p e o f employment i n w h i c h p a r t i c i p a n t s were i n v o l v e d f o r each i n d i v i d u a l . In t h i s d e s c r i p t i o n  However, c e r t a i n c o m m o n a l i t i e s  existed.  these commonalities c o n s t i t u t e t h e  e x p e r i e n c e and meaning o f l o o k i n g the perspective  were d i f f e r e n t  f o r a j o b and w o r k i n g  from  of the participants.  Throughout t h e i n t e r v i e w s ,  t h r e e major a r e a s were  a d d r e s s e d b y t h e p a r t i c i p a n t s . The p a r t i c i p a n t s d i d n o t l i m i t themselves a part  to descriptions  o f t h e work e x p e r i e n c e s , b u t s p e n t  of the time discussing  the i l l n e s s ; that  e x p l a i n e d w h a t i t meant t o b e i l l schizophrenia. public's to  and t o be d i a g n o s e d  with  A m a j o r c o n c e r n o f p a r t i c i p a n t s was t h e  l a c k o f knowledge and t h e m i s u n d e r s t a n d i n g  schizophrenia.  "schizophrenia",  I t was s i g n i f i c a n t t o t h e m  related  that  n o t j u s t t h e work- r e l a t e d e x p e r i e n c e s o f  someone w i t h  t h e i l l n e s s , was u n d e r s t o o d .  participants  spent time d e s c r i b i n g  with  i s , they  schizophrenia.  Thus t h e  w h a t i t was l i k e t o l i v e  F o r t h i s r e a s o n and because i t h e l p s t o  e l u c i d a t e the impact  o f s c h i z o p h r e n i a on  experiences, the accounts s c h i z o p h r e n i a w i l l preceed  work-related  d e s c r i b i n g what i t i s l i k e t o have the d e s c r i p t i o n of  work-related  experiences. The  work-related experiences  area of data.  The  comprised  p a r t i c i p a n t s spoke of t h e impact  s c h i z o p h r e n i a on t h r e e g e n e r a l a r e a s : working  day  illness.  t o d a y w o r k , and w o r k i n g  The  latter  on t h e l o n g - t e r m  the second l a r g e  l o o k i n g f o r work, throughout  r e f e r e d t o the impact  p a t t e r n o f employment.  the course  to the experiences  and  of  of s c h i z o p h r e n i a  When t a l k i n g  these experiences, p a r t i c i p a n t s described t h e i r responses  of  about  emotional  d i s c u s s e d t h e meaning t h a t  w o r k h o l d s f o r them. The  third  area of data i n c l u d e d the experiences  i n d i v i d u a l s had  that  i n c o p i n g w i t h t h e i l l n e s s and w i t h w o r k .  T h a t i s , t h e y d e s c r i b e d t h e v a r i o u s ways t h a t t h e y managed t o make w o r k a n d  schizophrenia compatible,  i n c l u d i n g t h e ways  a n d means by w h i c h i n d i v i d u a l s managed t o c o p e w i t h impact  of the i l l n e s s  h i s / h e r own  on w o r k .  While  the  each p a r t i c i p a n t  i n d i v i d u a l i z e d s t r a t e g i e s , the s t r a t e g i e s  a r t i c u l a t e d c a n be g r o u p e d i n t o t h e f o l l o w i n g categories: controlling  influential  p o s i t i v e a t t i t u d e , using support working c o n d i t i o n s .  had they  general  factors, developing  s y s t e m s and  selecting  a  70 The The  Illness Being The  illness  Accounts  Experience 111  accounts revealed t h a t p a r t i c i p a n t s appraised the i n terms of i t s g e n e r a l meaning f o r t h e i r  lives.  P a r t i c i p a n t s d e s c r i b e d v a r i o u s changes e x p e r i e n c e d w i t h t h e onset of the i l l n e s s .  As  i f to r e i n f o r c e the researcher's  u n d e r s t a n d i n g t h a t changes had life,  occurred i n the  individual's  p a r t i c i p a n t s r e f l e c t e d o n w h a t t h e i r l i f e was  like  before they got schizophrenia. I was a l w a y s s u r e o f m y s e l f b e f o r e t h i s . Then I found t h a t I was b e c o m i n g r e a l l y meek and l i k e w i t h d r a w n and r e a l l y scared of people. I've never been l i k e t h a t . I've always been r e a l l y o u t g o i n g . I a l w a y s , e v e r y day, I t h i n k back t o i n s t a n c e s , examples o f when I was g i v i n g and r e a l l y s o c i a l l y s k i l l e d . E v e r y d a y l o t s o f e x a m p l e s come i n t o my h e a d . Like going t o d a n c e s , t a l k i n g w i t h my f r i e n d s f o r h o u r s , f e e l i n g g o o d a b o u t m y s e l f — w h i c h i s l o n g gone now. But every d a y I t h i n k , why c a n ' t I be l i k e t h a t a g a i n ? Why d i d i t h a p p e n and e v e r y t h i n g ? B e c a u s e a t one t i m e I was r e a l l y h a p p y a n d g i v i n g and s o c i a l l y s k i l l e d . P r i o r t o d e v e l o p i n g s c h i z o p h r e n i a , I s u p p o s e d l y had what you would c a l l a normal e x p e r i e n c e o f r e a l i t y . Looking b a c k a t w h a t y o u ' d c a l l n o r m a l , i t was r u n n i n g a company. T h e n I was, how w o u l d y o u p u t i t ? I was more c o n f i d e n t i s t h e t e r m I w o u l d u s e — more c o n f i d e n t i n m y s e l f , my p r e s e n c e , w h a t I was d o i n g . F o r many o f t h e p a r t i c i p a n t s , t h e c h a n g e s seem t o come about suddenly  and  unexpectedly.  I t ' s l i k e somebody p u l l s a c a r p e t o u t f r o m u n d e r y o u and t h e r e a l i t y or the e x i s t e n c e t h a t you'd b u i l t your w o r l d on s u d d e n l y g e t s s t r e t c h e d t o c o m p l e t e d i f f e r e n t p o l a r r e g i o n s . . . You end up s i t t i n g on t h e f l o o r s t a r t i n g a l l o v e r a g a i n , o r a t l e a s t l e a r n i n g how t o c o n t r o l t h e way you t h i n k .  71 You j u s t wake up one day a s a t e e n a g e r a n d y o u "oh o h " t h i n g s a r e n ' t r i g h t , and y o u h a v e t h i s burden t o c a r r y .  realize extra  I f e e l t h a t when t h e s e t h i n g s came i n my m i n d , t h a t I w o n d e r e d , w h a t s h a p p e n i n g t o me? How come I g o t d e a d e m o t i o n s ? How come a l l o f a s u d d e n I g e t t w i s t e d i d e a s , y o u know. One  i n d i v i d u a l i n d i c a t e d t h a t t h e o n s e t t o o k a more s l o w  insidious  and  course.  You d o n ' t r e a l l y s a y , I'm s i c k , I c a n ' t h a n d l e t h i s . You d o n ' t know w h a t ' s h a p p e n i n g t o y o u . I t s n e a k s up you so s l o w l y . You become p s y c h o t i c s o s l o w l y . You d o n ' t r e a l i z e t h e r e ' s any o t h e r way t o l o o k a t t h e world. Regardless  o f w h e t h e r t h e o n s e t was  i l l n e s s experience experienced  i n v o l v e d many c h a n g e s .  sudden or slow,  on  the  Some p a r t i c i p a n t s  changes i n r e l a t i o n t o t h e i r sensory  perceptions.  Your senses a r e t e l l i n g you a l l k i n d s of w e i r d t h i n g s . . . From a n o r m a l p e r s o n , f r o m w h a t I remember, i s t h a t y o u h a v e one s e t o f p e r c e p t i o n s . In schizophrenia t h e o r i g i n a l s e t g e t b r o k e n s o t o s p e a k and y o u d i s c o v e r t h a t there are d i f f e r e n t ways o f p e r c i e v i n g t h i n g s . It p r o d u c e s a t r e m e n d o u s amount o f g r e y a r e a s . S e v e r a l p a r t i c i p a n t s had experienced  changes i n a u d i t o r y p e r c e p t i o n s  and  auditory hallucinations.  W i t h s c h i z o p h r e n i a y o u h a l l u c i n a t e , y o u h e a r t h i n g s and y o u r senses a r e t e l l i n g you t h i n g s t h a t a r e n ' t r e a l . Of c o u r s e I w o u l d h e a r t h i n g s a l l t h e t i m e . I would have a u d i t o r y i l l u s i o n s . I found t h a t I thought e v e r y b o d y was s p e a k i n g a b o u t me. They were a u d i t o r y a l l the time. Some p a r t i c i p a n t s d i s c o v e r e d s o u n d , a s one  changes i n t h e i r s e n s i t i v i t y  to  p a r t i c i p a n t explained:  I ' l l be s i t t i n g o u t s i d e and I'm having a l l your hear a crack at  h e r e and I h e a r a c a r r e v up r e a l l y l o u d l i k e , I'm t o o a l e r t t o i t . It's like s i x senses coming a l i v e a t once. You t h e d o o r and y o u t u r n t o i t .  72 A s w e l l , many p a r t i c i p a n t s e x p e r i e n c e d perceptions,  changes i n v i s u a l  as t h e f o l l o w i n g s t a t e m e n t e x e m p l i f i e s .  L i k e my v i s i o n , my p e r c e p t i o n , l i k e I d i d n ' t h a v e n o r m a l perception. I d i d n ' t have t h r e e d i m e n s i o n a l p e r c e p t i o n . I r e a l l y n o t i c e d — l i k e t h i s g r o c e r y s t o r e where I'd a l w a y s go, i t a l w a y s u s e d t o be f l a t and t h e n [ a f t e r m e d i c a t i o n ] I saw c o r n e r s . The b r i c k s s t o o d o u t . So I ' d wake up and t a k e my p i l l a n d i t was j u s t a s i f y o u ' d focused a t e l e v i s i o n or something. See when I was i l l I was a l w a y s f i g h t i n g t o g e t t h a t , b u t I was g e t t i n g w o r s e and w o r s e . Most p a r t i c i p a n t s a l s o experienced  changes i n t h e i r  u s u a l p a t t e r n s o f r e l a t i n g t o o t h e r s . , Some i n d i v i d u a l s became w i t h d r a w n , w h i l e o t h e r s  found t h a t they  became  defensive.  O t h e r s e x p l a i n e d t h a t t h e y w o u l d become  hyperactive  around  people.  When y o u do s u f f e r f r o m s c h i z o p h r e n i a , t o meet someone new i s a n i g h t m a r e i n many w a y s . B e c a u s e y o u ' v e l o s t a l l y o u r t o o l s f o r s e n s i n g a n o t h e r human b e i n g - a s f a r a s v i s u a l and a u d i o . What y o u s e e , w h a t y o u h e a r i s n ' t r e l i a b l e so you c a n ' t t e l l i f t h a t p e r s o n s c a r r y i n g a gun o r n o t b a s i c a l l y . So y o u become e x t r e m e l y defensive. I ' v e n e v e r b e e n a b l e t o be c l o s e t o p e o p l e , and t o u c h p e o p l e and t h i s i s s o r t o f s c h i z o p h r e n i a t o o , s o r t o f p u t t i n g up a w a l l w i t h p e o p l e , p u t t i n g up a w a l l . Another t h i n g i s that r e l a t i n g to people i s very d i f f i c u l t b e c a u s e when y o u s u f f e r f r o m s c h i z o p h r e n i a , w h a t p e o p l e s a y c a n be i n t e r p r e t e d many d i f f e r e n t ways and w i t h s c h i z o p h r e n i a y o u t e n d t o i n t e r p r e t t h i n g s i n a s e m i p a r a n o i d way, l i k e t h e y ' r e d i r e c t e d a t y o u . I hated i n t e r a c t i o n w i t h other people because I got p a r a n o i d and I g o t h y p e r . O t h e r p e o p l e make me h y p e r when I'm a r o u n d t h e m — s t a r t g e t t i n g a l l e x c i t e d and weird. And t h e n t h e more e x c i t e d I ' d g e t , t h e more paranoid I get. I was v e r y w i t h d r a w n . L i k e p e o p l e seemed a l o n g w a y s o f f t o me, s o t h a t ' s how I a c t e d t o w a r d s them. L i k e i f y o u ' r e s i t t i n g r i g h t t h e r e , I'd t r e a t you as i f you were s i t t i n g a s f a r away a s t h e k i t c h e n , s o y o u c a n ' t r e l a t e l i k e t h a t . And I know when I f i r s t t o o k t h e m e d i c a t i o n  73 t h a t e f f e c t w o u l d seem t o d i s a p p e a r . P e o p l e w o u l d b e a t t h e p r o p e r d i s t a n c e and s t u f f . I t ' s almost a p h y s i c a l thing. T h e y seemed s o f a r away. Changes i n t h i n k i n g and b e h a v i n g were a l s o e x p e r i e n c e d and some o f t h e s e w e r e v e r y d r a m a t i c . I mean t h e r e was a c e r t a i n t i m e I ' d come home h e r e when I was r e a l l y b a d , t h a t I ' d a c t u a l l y make [my f a m i l y member] go a n d s t a y a t a h o t e l w i t h me b e c a u s e I was s o p a r a n o i d . I imagined p e o p l e w a t c h i n g t h e apartment and t h i n g s happening. A t t h i s time I c o u l d n ' t s l e e p a t n i g h t because I would hear v o i c e s o u t s i d e and I thought people w e r e t r y i n g t o g e t i n . I w e n t a s f a r a s I was t h i n k i n g o f g e t t i n g w e a p o n r y a n d t h i n g s l i k e t h a t b e c a u s e I was so f r i g h t e n e d . I never a c t u a l l y d i d . O t h e r s e x p e r i e n c e d l e s s d r a m a t i c b u t no l e s s  disruptive  changes i n t h i n k i n g and behaving. Another problem w i t h s c h i z o p h r e n i a i s you t e n d — m y c o n c e n t r a t i o n t e n d e d t o be s c a t t e r e d and I c o n s i d e r e d myself impractical. Like I couldn't look after the normal t h i n g s a p e r s o n does t o s u r v i v e , l i k e c o o k i n g and c l e a n i n g and s t u f f l i k e t h a t . Some p a r t i c i p a n t s a l s o d e s c r i b e d how b e i n g i l l emotions  a n d mood.  affected  their  One p e r s o n s a i d h e f o u n d h e s t a r t e d  h a v i n g mood s w i n g s . I t h i n k I g e t more f a t i g u e d t h a n t h e a v e r a g e p e r s o n , p a r t l y b e c a u s e I'm s c h i z o p h r e n i c a n d a l o w e r e d mood makes y o u more t i r e d , when y o u ' r e i n a d e p r e s s e d mood. I'm a l w a y s i n a s l i g h t l y d e p r e s s e d mood e x c e p t when I get high. When I g e t h y p e r t h a t ' s h a r d t o o b e c a u s e e v e r y t h i n g s p e e d s up s o r t o f a n d i t ' s h a r d t o b e t h a t way. So i t ' s h a r d f i n d i n g t h e r i g h t b a l a n c e , l i k e mood balance. S e v e r a l p e o p l e s a i d t h e y w o u l d more e a s i l y become angry. I was s i t t i n g h e r e o n e n i g h t a n d I j u s t c o u l d n ' t h a n d l e it. I t h o u g h t I was g o i n g t o do somebody some harm. I was r e a l l y f r i g h t e n e d b e c a u s e p e o p l e w e r e o u t s i d e . . . I was b u i l d i n g up t h i s m a s s i v e a g g r e s s i o n t o go o u t s i d e  74 a n d s t o p t h i s o n c e and f o r a l l . T h e n i t r e a l l y h i t me. Y o u ' v e go t o do s o m e t h i n g a b o u t t h i s . Y o u ' r e way o u t o f line. I t ' s t e r r i b l e t o h a v e an o u t b u r s t w h e r e y o u s t a r t s a y i n g u n b e l i e v a b l e t h i n g s and y e l l i n g a t p e o p l e and s a y i n g insulting things. I w o u l d j u s t — p r o b a b l y an i n n o c e n t r e m a r k — m a y b e — b u t a n y t h i n g w o u l d make me b l o w up. So I s t a y e d away f r o m t h e i r p l a c e b e c a u s e I c o u l d n ' t c o n t r o l my t e m p e r when I was t h e r e . . . I j u s t a r g u e d . I y e l l e d a l o t and had temper tantrums. The  m a j o r i t y of p a r t i c i p a n t s found  meant h a v i n g a d e c r e a s e d  that having  schizophrenia  tolerance for stress.  When a l o t o f p e o p l e e x p e r i e n c e s t r e s s , t h e y g e n e r a l l y s o r t of get i r r i t a b l e . With s c h i z o p h r e n i a , your senses go o u t o f whack. You s t a r t h a l l u c i n a t i n g , s t a r t h e a r i n g t h i n g s , and s t r e s s c a n a f f e c t y o u q u i t e d i f f e r e n t l y . S t r e s s seems t o be a v e r y i m p o r t a n t p a r t o f m e n t a l i l l n e s s — b r e a k i n g down s o e a s i l y . I t h i n k i t ' s — l i k e s c h i z o p h r e n i a t o me comes on when you're s t r e s s e d o u t , when y o u ' r e d e p r e s s e d . A n y t h i n g t h a t i s n ' t g o i n g t o o w e l l , w o r k i n g t o o w e l l , seems t o trigger i t . As a r e s u l t o f t h e c h a n g e s i n t h i n k i n g , p e r c e i v i n g , behaving  and  experienced function. a vegetable  c h a n g e s i n s t r e s s t o l e r a n c e , some p a r t i c i p a n t s periods of dramatic  One  change i n t h e i r a b i l i t y  p a r t i c i p a n t f e l t as thought  f o r a few y e a r s " .  Other people  he h a d  been  to "just  made comments  t h a t i l l u s t r a t e d t h e change i n t h e i r a b i l i t y t o f u n c t i o n . I c o u l d n ' t r e a l l y f u n c t i o n . I wasn't a b l e t o cook meals or do t h i n g s t h a t I n e e d e d t o do, n o r m a l t h i n g s . I was wandering around the c i t y , j u s t t o t a l l y out of i t , not r e a l l y t a k i n g care of myself. I was l i v i n g w i t h my p a r e n t s and I j u s t managed a t home and r e a l l y w a s n ' t a b l e t o do a n y t h i n g a t t h e t i m e .  Many o f t h e  c h a n g e s j u s t d e s c r i b e d had  participant's  self-confidence  and  an  affect  self-esteem.  on Several  participants explained that,  e s p e c i a l l y during the  years of being i l l ,  l o s t confidence i n t h e i r  abilities.  One  diminished  t h e y had  first  p e r s o n ' s comment i n d i c a t e s t h i s s e n s e  few  of  confidence.  What h a p p e n s o r w h a t I f o u n d h a p p e n e d i s t h a t c o n f i d e n c e goes because a l l of a sudden y o u r senses are hot g i v i n g you t h e r i g h t i n f o r m a t i o n . You c a n ' t t r u s t y o u r b r a i n . Then you l o s e c o n f i d e n c e i n what y o u ' r e s a y i n g , the d e c i s i o n s you're making. One  p a r t i c i p a n t e x p l a i n e d t h a t he  made p e o p l e w i t h  believed  schizophrenia feel  l o s s of  confidence  self-conscious.  T h e y ' r e v e r y c o n c e r n e d a b o u t how t h e y a p p e a r , b e c a u s e t h e y know t h e y ' r e n o t q u i t e r i g h t , so t h e y ' r e a l w a y s f e a r f u l t h e y ' l l do s o m e t h i n g . Self-consciousness i s a p a r t of i t . O t h e r p a r t i c i p a n t comments i l l u s t r a t e t h e esteem.  They s a i d ,  c o n f i d e n c e and  "at that  self-esteem",  become a l e s s e r p e r s o n " , and In addition  to the  t i m e I had " you "my  sleep. "If  I m i s s a few  night  I'm  psychotic."  not  feel like  s e l f - e s t e e m was  you've  really  h o u r s s l e e p on any  need f o r s l e e p  " I c a n ' t go  psychotic."  getting  self-  low."  above changes, most p a r t i c i p a n t s  participant said, I j u s t go  self-  r e a l l y low  s o r t of  e x p e r i e n c e d change i n r e l a t i o n t o the r e s t . One  l o s s of  without a  Another p a r t i c i p a n t e i t h e r end  s l e e p and  t h e n I'm  and  also  and  night's commented,  then the totally  next  76 Another  change t h a t p a r t i c i p a n t s encountered  was t h a t  they had t o d e a l w i t h t h e u n p r e d i c t a b l e nature o f t h e illness. I t comes a n d g o e s . You g e t b e t t e r t h a n y o u f a l l back. You g e t b e t t e r t h a n y o u f a l l b a c k . T h e r e w e r e many t i m e s I t h i n k I'm i n f i n e s h a p e , t h e n a week l a t e r I had a collapse. I ' v e h a d many t i m e s I t h o u g h t I was o n t h e r o a d t o r e c o v e r y a n d t h e n I was r i g h t b a c k t o s q u a r e one a g a i n after t h a t , s o i t m u s t h a v e h a p p e n e d I d o n ' t know how many t i m e s . F o r some p a r t i c i p a n t s t h e u n p r e d i c t a b i l i t y o f t h e i l l n e s s caused  them t o f e e l a n x i o u s .  A s one p a r t i c i p a n t e x p l a i n e d ,  t h e u n p r e d i c t a b i l i t y o f t h e i l l n e s s was a w o r r y never  knew how l o n g a n e p i s o d e w o u l d  because she  last.  I h a v e t r e m e n d o u s a n x i e t y t o w a r d s i t b e c a u s e I t h i n k how long w i l l t h i s [episode] l a s t ? W i l l i t l a s t a month, a week o r a y e a r ? In  a d d i t i o n t o a l l t h e o t h e r changes, t h e m a j o r i t y o f  participants' activity,  e x p e r i e n c e d changes i n energy  and psychomotor  due t o s i d e e f f e c t s o f m e d i c a t i o n .  W i t h t h e wrong m e d i c a t i o n , i t ' s j u s t l i k e t h e d r o w s i e s . T h a t i s , i f I t a k e t o o much m e d i c a t i o n , I'm n o t r e a l l y c o n s c i o u s u n t i l e l e v e n o ' c l o c k and you're s i t t i n g t h e r e w i t h y o u r h e a d down a n d t h e b r a i n i s n o t c a p a b l e o f — i t ' s l i k e you j u s t can't operate l i k e t h a t . You c a n ' t j u s t throw i t i n t o h i g h speed. J u s t g e t t i n g up i n t h e m o r n i n g a t 7 o ' c l o c k when y o u ' r e t a k i n g t h e d r u g s . Unbelievable. L i k e I was a l w a y s g r o g g y i n t h e m o r n i n g — d i d n ' t feel l i k e d o i n g much. [My t h e r a p y p r o g r a m ] o p e n e d a t n i n e each morning. I u s e d t o g e t a r i d e f r o m a g u y who l i v e d o u t h e r e , a n d i t was h a r d w a k i n g up t h e n t o o . I had t o wake up a t s e v e n e a c h d a y s o o n c e I g o t my m e d i c a t i o n reduced I found i te a s i e r t o g e t i n t o i t e a r l i e r . The a n t i d e p r e s s a n t h o l d s me b a c k a l i t t l e b i t . B u t t h e h a l d o l a n d t h e b e n z t r o p i n e h a v i n g t o be o n t h a t f u l l  t i m e , i t h o l d s me b a c k — h a l f a m i l e [ o f r u n n i n g ] a n d I ' v e g o t t o s t o p t o c a t c h my b r e a t h . One p a r t i c i p a n t e x p l a i n e d t h a t s h e h a d t o t o l e r a t e  terrible  side e f f e c t s of the medication. The s i d e e f f e c t s w e r e s o t e r r i b l e , t h e s h a k i n g . A n d we c o u l d n ' t g e t t h e dose h i g h enough t o work w i t h o u t t h e side effects. I g o t tremendous s h a k i n g and so t h e y had to stop those. P a r t i c i p a n t s d e s c r i b e d some o f t h e i r e m o t i o n a l to being i l l .  Some p a r t i c i p a n t s d e s c r i b e d t h e e m b a r r a s s m e n t  t h e y f e l t when t h e y t h o u g h t episodes. you  she  back t o t h e b e h a v i o r d u r i n g  As one p a r t i c i p a n t s a i d ,  t h i n k of t h i n g s you d i d i n t h e  that.  responses  I f e e l so s t u p i d . "  "Sometimes by y o u r s e l f , i l l n e s s and you g o — I d i d  Another p a r t i c i p a n t explained that  f e l t b a d l y a b o u t t h e way s h e h a d t r e a t e d p e o p l e  was a c u t e l y i l l .  She s t a t e d , " I was s t i l l  o f t h e t h i n g s I ' d d o n e when I was i l l . who I ' d h u r t . "  acute  when s h e  bothered  by a l o t  I had a good  friend  Several participants described feelings of  f r u s t r a t i o n w i t h t h e l a c k o f improvement i n t h e i r  illess.  This i s frustration. B e c a u s e I ' v e b e e n l i k e t h i s f o r 23 y e a r s and I've thought o f dozens o f people t h a t have g o t b e t t e r i n t h a t t i m e , y o u k n o w — t h a t h a d t h e same symptoms a s me o r w o r s e , y e t I n e v e r g o t b e t t e r . O r d i n a r y m e d i c a t i o n s such as c h l o r p r o m a z i n e and so on d i d n ' t seem t o do v e r y much f o r me. And t h a t caused e v e n more d e s p a i r b e c a u s e I t h o u g h t , o h my g o o d n e s s , t h e m e d i c a t i o n s t h a t a r e supposed t o work a r e n ' t w o r k i n g f o r me. I n d e s c r i b i n g w h a t i t meant t o b e i l l , used e x p r e s s i o n s , such as "pure h e l l " , "totally terrifying."  some  individuals  " a nightmare",  These e x p r e s s i o n s suggest  a n g u i s h w h i c h some p a r t i c i p a n t s e x p e r i e n c e d  and  t h e f e a r and  at certain  times.  r 78 A n o t h e r p a r t i c i p a n t summed up h i s e x p e r i e n c e saying,  "So s c h i z o p h r e n i a  i l l by  i s j u s t a very p a i n f u l s i t u a t i o n . "  Participants also described i l l n e s s experience.  of being  various points of their  A s j u s t m e n t i o n e d , some p a r t i c i p a n t s  i n d i c a t e d t h a t a t c e r t a i n p o i n t s t h e i r i l l n e s s was l i k e "a nightmare."  Most o f t e n t h e y were r e f e r r i n g t o t h e f i r s t  several years of the i l l n e s s .  The f i r s t  several years, f o r  many p a r t i c i p a n t s w e r e t h e w o r s t , t h a t i s , t h e y w e r e a c u t e l y i l l  more o f t e n .  P a r t i c i p a n t s made comments s u c h a s , "When  someone i s d i a g n o s e d w i t h s c h i z o p h r e n i a — w h e n h e g e t s the world  d i s i n t e g r a t e s a s t h e y know i t . "  describing the f i r s t r e a l l y miserable  years of being  times."  Another person, i n  i l l s a i d , " I h a d some  Some p a r t i c i p a n t s i n d i c a t e d t h a t  t h e y f e l t more " o u t o f c o n t r o l " a t t h e b e g i n n i n g illness.  sick,  A t another point of the i l l n e s s  of the  several  p a r t i c i p a n t s began t o d e s i r e knowledge about t h e i l l n e s s and b e g a n t o l e a r n how t o c o p e w i t h t h e i l l n e s s . I t h o u g h t l e t s go t o d a y c a r e a n d l e t s l e a r n more a b o u t this. A n d I l e a r n e d more a b o u t my own c h e m i s t r y a n d I t h i n k i t becomes a p a r t o f y o u . T h e r e ' s a c e r t a i n p a r t of you t h a t says t h i s i s important because i t s p a r t o f me. So g r a d u a l l y i t s become a s t r o n g p o i n t o f m e — m y personality. There i s a chemical need t h e r e t h a t ' s p a r t o f me, a n d u n t i l t h e y f i n d t h e e x a c t g e n e a n d how t o t r e a t i t , i t w i l l a l w a y s be a p a r t o f me. You do f e e l , o h n o , y o u ' v e h a d t o s t a r t a l l o v e r a g a i n , but I'm g e t t i n g u s e d t o t h a t f e e l i n g . And t h e one positive t h i n g I c a n s a y a b o u t t h a t i s t h a t b e c a u s e I'm g e t t i n g u s e d t o t h a t now, i t ' s n o t s u c h a b l o w a s i t i s the f i r s t time. The f i r s t t i m e i t ' s a t e r r i b l e s h o c k , t h e s e c o n d t i m e i t was a m i s e r a b l e s h o c k , t h e t h i r d t i m e i t ' s j u s t a shock and t h e f o u r t h t i m e you s t a r t g e t t i n g used t o i t . So r i g h t now I know t h a t I c a n p u l l m y s e l f  up a g a i n , w h i c h I d i d n ' t know t h e f i r s t 2 o r 3 t i m e s . I t h o u g h t , o h my l i f e i s r u i n e d . Now I know my l i f e i s n ' t ruined. A number o f t h e p a r t i c i p a n t s d e s c r i b e d t h e i r at  another  ill,  point of the i l l n e s s .  experience  During a point of being  t h e y f e l t more h e a l t h y a n d w e l l t h a n t h e y h a d a t o t h e r  times.  As mentioned i n c h a p t e r  made comments s u c h a s , " T h i n g s been f o r y e a r s . " Another person b e t t e r than  i n previous  3, many o f t h e p a r t i c i p a n t s a r e b e t t e r now t h a n t h e y i n d i c a t e d t h a t h e was  have  feeling  years.  Well, paranoid schizophrenia i s a very serious i l l n e s s . I seem t o be p u l l i n g o u t o f i t now t h a t I'm g e t t i n g older. I seem t o be more m a t u r e i n d e a l i n g w i t h i t . Some p a r t i c i p a n t s commented t h a t a t a c e r t a i n p o i n t o f t h e i l l n e s s t h e y w e r e a b l e t o go b e y o n d t h e n s e l v e s a n d s t a r t h e l p i n g other people. accepted  One p e r s o n  s a i d t h a t when h e h a d  t h e i l l n e s s , h e was a b l e t o t h i n k a b o u t  other  people. I t t o o k , w e l l , when I s a y c o m p l e t e a c c e p t a n c e , I ' d s a y a b o u t a y e a r a g o — b e c a u s e when i t • s c o m p l e t e y o u * r e a b l e t o g o away f r o m y o u r s e l f a n d c o n c e n t r a t e o n o t h e r people w i t h the i l l n e s s . A n d I t h i n k t h a t ' s when y o u ' r e f e e l i n g a c c e p t i n g — y o u ' r e a b l e t o go o n . That p a r t i c u l a r person to  help other people  and s e v e r a l o t h e r s i n d i c a t e d a d e s i r e  who h a v e s c h i z o p h r e n i a .  One p a r t i c u l a r i n s t a n c e — h e r s o n i s c o m i n g t o t h e m e e t i n g t o n i g h t a n d — b e c a u s e t h e r e was someone t h e o t h e r n i g h t a t [ t h e c o m m u n i t y m e e t i n g ] who s p o k e o u t i n t h e m i d d l e o f t h e s e s s i o n , and he s a i d he h a s a s o n t h a t i s s c h i z o p h r e n i c a n d d o e s n ' t t a k e h i s meds s o m e t i m e s . And one o f t h e g u y s s a i d , " w e l l maybe [my f r i e n d ] c a n t a l k t o h i m . A n d maybe i n a c o u p l e w e e k s I w i l l g e t a h o l d o f h i s s o n and t a l k t o him.  80 I t h i n k a b o u t — n o w I ' v e come a l o n g way, and maybe I c a n h e l p o t h e r s c h i z o p h r e n i c s and maybe g i v e t h e m some h o p e . One r e a s o n I w a n t e d t o do t h i s , i s p a r t o f my, w h a t I c a l l w o r k , p a r t o f my u s e f u l n e s s . I f I can h e l p o t h e r p e o p l e , y o u n g s t e r s now who a r e g r o w i n g up and w i l l be d e v e l o p i n g t h i s i l l n e s s . . . S o I'm h o p i n g my e x p e r e i n c e i s c o m i n g t o be h e l p f u l t o y o u n g e r p e o p l e who a r e g o i n g t h r o u g h t h i s — a n d I w i s h I h a d known t h e f i r s t y e a r o r two when I was ill. Two  p a r t i c i p a n t s suggested  s h o u l d h e l p p e o p l e , who about i t .  One  t h a t people  who  have s c h i z o p h r e n i a  don't have t h e i l l n e s s ,  t o l e a r n more  o f t h e m made t h e f o l l o w i n g comment.  T h i s i s one t h i n g t h a t I ' d l i k e t o h a v e s e e n i s p e o p l e who h a v e become i l l c a n go a r o u n d — s a y t a l k i n g t o h i g h s c h o o l s and c l e a r up t h e p r o b l e m s s o t h a t t h e r e a r e n ' t m i s c o n c e p t i o n s about t h e word. In  summary, b e i n g i l l  t h i n k i n g p e r c e i v i n g , and v a r i o u s symptoms and for  each person.  other people.  meant e x p e r i e n c i n g c h a n g e s i n  behaving.  Each person  t h e n a t u r e o f t h e symptoms was  Some p a r t i c i p a n t s w i t h d r e w f r o m Others  experienced  i n i n t e r a c t i n g w i t h people.  well,  lost  Many f o u n d  that, at  affected.  Each  this affected their a b i l i t y to function.  many, b e i n g i l l and  relationships  others  t i m e s , t h e i r a b i l i t y t o t o l e r a t e s t r e s s was  episodes  with  tension i n  r e l a t i o n s h i p s b e c a u s e o f mood c h a n g e s and  d e s c r i b e d how  different  Changes o c c u r r e d i n r e l a t i o n s h i p s  because of paranoia.  confidence  experienced  For  meant h a v i n g t o d e a l w i t h u n p r e d i c t a b l e  troublesome  f o r many b e i n g i l l  c e r t a i n behaviors  and  improvement i n h e a l t h .  side e f f e c t s of medication. meant f e e l i n g e m b a r r a s s e d  As  about  f e e l i n g f r u s t r a t e d w i t h the l a c k of  81 P a r t i c i p a n t s described experiences points of the illness. years  they'd  had a t v a r i o u s  S e v e r a l e x p l a i n e d t h a t t h e f i r s t few  had been t h e worst.  Some p a r t i c i p a n t s d e s c r i b e d  p e r i o d s d u r i n g which they had developed a d e s i r e t o l e a r n more a b o u t t h e i l l n e s s ,  a n d a number s a i d t h a t a t a c e r t a i n  p o i n t they had acquired  an i n t e r e s t i n h e l p i n g o t h e r s t o  l e a r n about schizophrenia. Being  Diagnosed  •  I n a d d i t i o n t o d e s c r i b i n g w h a t i t meant t o b e  ill,  p a r t i c i p a n t s d e s c r i b e d w h a t i t meant t o b e d i a g n o s e d schizophrenia. the  H a v i n g t h e name " s c h i z o p h r e n i a " a t t a c h e d t o  i l l n e s s was a s i g n i f i c a n t p a r t o f t h e i l l n e s s  Two o f t h e p a r t i c i p a n t s e x p l a i n e d t h a t , i n i t i a l l y , r e l i e v e d t o f i n a l l y know "what was w r o n g . " with the illness  with  they  k n o w i n g what  Eventually these i n d i v i d u a l s  came t o b e l i e v e , a s d i d t h e o t h e r p a r t i c i p a n t s , t h a t t h e d i a g n o s i s o f s c h i z o p h r e n i a was " a b a d t h i n g " . p a r t i c i p a n t s i n d i c a t e d t h a t they s h o c k e d o r s t u n n e d when t h e y  were  They h a d l i v e d  f o r a period of time without  was w r o n g o r how t o g e t h e l p .  experience.  and t h e i r f a m i l y  having  Some felt  r e a l i z e d what t h e d o c t o r had  s a i d t o them. I t h i n k when t h e y f i r s t g e t t h e i l l n e s s i t j u s t h i t s you. I t ' s l i k e w h o a — I ' v e been l a u g h i n g a t t h e s e p e o p l e t h a t h a v e t h i s i l l n e s s , f o r y e a r s , a n d now y o u s a y I g o t it. I n f a c t my p a r e n t s w e r e i n s h o c k when t h e d o c t o r t o l d them t h a t ' s what I h a d . B e c a u s e t h e y ' d p i c t u r e d p e o p l e i n l o c k e d rooms a n d d r o o l i n g i n t h e c o r n e r .  82 I t h i n k I c o u l d d e a l w i t h somebody t e l l i n g me I h a v e c a n c e r , a l o t e a s i e r t h a n b e i n g w h a t I am. Most p a r t i c i p a n t s e x p l a i n e d schizophrenia  t h a t when g i v e n t h e d i a g n o s i s o f  t h e y f e l t t h e y had been  "labelled" with a  " t e r r i b l e word" t h a t had " t e r r i b l e c o n n o t a t i o n s " .  A s one  p a r t i c i p a n t s a i d , " I t h i n k t h e word " s c h i z o p h r e n i a " with  " c h i l d molester"  a n d "mass m u r d e r e r . "  i s there  Another  p a r t i c i p a n t e c h o e d t h i s comment when h e s a i d , "You m i g h t a s w e l l s a y "mass m u r d e r e r " o r " p e d o p h i l e "  o r something.  "Many  p a r t i c i p a n t s i n d i c a t e d that they thought t h e p u b l i c associated  " s c h i z o p h r e n i c s " w i t h other dangerous people, as  the  f o l l o w i n g two s t a t e m e n t s i l l u s t r a t e ;  "They t h i n k w e ' r e  all  p s y c h o t i c k i l l e r s " a n d "They t h i n k w e ' r e d a n g e r o u s . "  One  p a r t i c i p a n t t h o u g h t t h a t t h e w o r d was s o b a d t h a t a new one should  be u s e d  instead.  I t h i n k i t ' s t h e name t h a t s c a r e s p e o p l e . I t s c a r e s my own p a r e n t s . They s t i l l d o n ' t l i k e t h a t w o r d — d o n ' t u s e i t v e r y much. So I t h i n k t h a t w o r d h a s g o t t o h a v e a m u l t i m i l l i o n d o l l a r campaign t o c l e a n i t up, o r g e t a new one w h i c h w o u l d be a l o t c h e a p e r . Many p a r t i c i p a n t s r e s p o n d e d t o t h e d i a g n o s i s and  by r e j e c t i n g i t  r e j e c t i n g t h e t r e a t m e n t t h a t w o u l d r e m i n d them o f t h e  diagnosis. I've h a d t h i s " g o i n g a g a i n s t t h e d o c t o r s " f i v e y e a r s ago b a c k i n '86, a n d g o i n g a g a i n s t my p a r e n t s — n o , n o , I don't need m e d i c a t i o n . I f o u n d o u t t h e h a r d way t h a t y o u do n e e d [ t h e m e d i c a t i o n ] . And I had a n o t h e r p s y c h o t i c e p i s o d e a n d I e n d e d up b a c k i n h o s p i t a l a n d the doctor said,"we can p u t you i n Riverview, i s t h a t what y o u want?" J u s t k i n d o f an u l t i m a t u m . I p e r s o n a l l y have a g r e a t d e a l o f t r o u b l e a c c e p t i n g t h e f a c t t h a t I'm s c h i z o p h r e n i c . I d o n ' t w a n t t o be schizophrenic. G i v e me a b r e a k . This i s n ' t happening  83 t o me. So y o u s o r t o f f e e l l i k e i t s a v e r y n e g a t i v e t h i n g — a v e r y bad t h i n g t o happen. A t one t i m e I was v e r y v e r y c o n c e r n e d a b o u t b e i n g a m e n t a l p a t i e n t and a l o t o f t h a t f o r me w a s — I was a m e n t a l p a t i e n t f o r as l o n g as I k e p t t a k i n g t h e d r u g s , right. I made a s t r o n g c o n n e c t i o n b e t w e e n t a k i n g d r u g s a n d b e i n g m e n t a l p a t i e n t and I j u s t d i d n ' t w a n t t o be that. Because they viewed  t h e w o r d a s b e i n g n e g a t i v e , some  p a r t i c i p a n t s d i d n o t w a n t t o t e l l many p e o p l e a b o u t diagnosis.  One  p a r t i c i p a n t thought  their  i t would r u i n her l i f e i f  p e o p l e knew a b o u t h e r d i a g n o s i s . I d o n ' t w a n t t o r u i n t h e r e s t o f my l i f e and my c a r e e r by h a v i n g a t e r r i b l e d i a g n o s i s a t t a c h e d t o i t , b e c a u s e r e a l l y t h a t w o u l d r u i n my l i f e I w o u l d s a y . Some p a r t i c i p a n t s h e s i t a t e d t o t e l l u n c e r t a i n t y o f how individual said, schizophrenia. Other  o t h e r people, because of  these people would respond.  "I've never mentioned  I wouldn't  h a v e any  As  one  t h e word  friends.  T h e y ' d be o f f . "  comments i n d i c a t e d u n c e r t a i n t y a b o u t o t h e r p e o p l e s '  responses. I'm n o t s u r e how I f e e l a b o u t p e o p l e k n o w i n g I h a v e schizophrenia. I was w a t c h i n g TV a week b a c k and i t was some r e l i g i o u s "who-ha". The p o o r guy i s s i t t i n g up t h e r e and t h e y had a c a p t i o n u n d e r n e a t h t h a t s a i d schizophrenic. And t h e n t h e y moved t o t h e n e x t one and i t was some woman . b l a b b i n g a b o u t b e i n g d e p r e s s e d . And t h e n t h e y s a i d , "how c a n we h e l p t h e s e p e o p l e ? " Well y o u know i t ' s l i k e a l l o f a s u d d e n w e ' r e w h a t n e e d s t o be t a k e n c a r e o f . You f e e l y o u h a v e t o k e e p up a n o r m a l l i f e s t y l e . It's v e r y h a r d t o e x p l a i n why y o u d o n ' t w o r k , y o u ' r e n o t functioning without s p i l l i n g the b e a n s — I h a v e a n i l l n e s s and I c a n ' t — b e c a u s e t h e r e i s s t i l l a large stigma attached. I n f a c t my p a r e n t s w o u l d s a y , " w e l l d o n ' t s a y t h a t t o somebody". And t h e y w e r e c o v e r i n g up f o r me a c o u p l e o f y e a r s t o o , b e c a u s e t h e y t h o u g h t i t was t e m p o r a r y and t h e y d i d n ' t w a n t t o s a y ,  84 "oh y e s o u r [ d a u g h t e r ] h a s s c h i z o p h r e n i a " , a n d t h e y ' l l s a y "oh my g o o d n e s s ! " and "oh t h a t ' s t o o b a d . She'll spend the r e s t of her l i f e i n h o s p i t a l " or something. So t h e r e ' s b e e n a t r e m e n d o u s c o v e r i n g up o f i t a l l t h e time. P a r t i c i p a n t s i n d i c a t e d t h a t they the p u b l i c ' s misunderstanding  of the term  T h e y b e l i e v e d t h e p u b l i c was nature t h e way  of the  i l l n e s s and  people used the  felt  frustration  with  "schizophrenia."  very misinformed about the  some p a r t i c i p a n t s f e l t a n n o y e d  true with  word.  When y o u g i v e somebody t h e t i t l e s c h i z o p h r e n i c , t h e p e r s o n on t h e s t r e e t r e a l l y d o e s n ' t know w h a t i s b e i n g said. You know e v e r y b o d y — l i k e k i d s s a y , "oh he's s c h i z o p h r e n i c " — i t ' s s o r t o f a common e x p r e s s i o n , w i t h o u t r e a l l y k n o w i n g w h a t i t means. I t h i n k a l o t of t h a t r e a l l y c a r r i e s on i n t o a d u l t h o o d a n d t h e y t r e a t y o u abnormally. E v e r y once i n a w h i l e I hear p e o p l e u s i n g the word s c h i z o p h r e n i a i n a c o m p l e t l y w r o n g manner and i t a n n o y s me, b e c a u s e t h e s e a r e w e l l e d u c a t e d p e o p l e a n d t h e y r e a l l y d o n ' t know. T h e y s t i l l t h i n k i t means b l a c k and white. You d o n ' t h e a r t h e m s a y i n g I h a d a d i a b e t i c k i n d o f day. I h e a r d someone s a y i n g I h a d a s c h i z o p h r e n i c k i n d o f d a y and I l o o k e d a t t h e m and t h o u g h t , "oh no y o u d i d n ' t ! Oh no y o u d i d n ' t ! " I t h i n k i n general the p u b l i c i s g r o s s l y misinformed. I t h i n k one o f t h e r e a s o n s f o r t h a t i s when y o u s a y s c h i z o p h r e n i a they tend t o t h i n k of extreme cases t h a t exist. Yes t h e r e a r e some s c h i z o p h r e n i c s who a r e r e a l l y q u i t e out of touch w i t h r e a l i t y , but t h e r e are a l o t of s c h i z o p h r e n i c s who a r e h i g h f u n c t i o n i n g , who do a s w e l l i f n o t b e t t e r t h a n a l o t o f n o r m a l p e o p l e so t o speak. Being  d i a g n o s e d w i t h s c h i z o p h r e n i a a f f e c t e d many  participants' to  self-esteem.  This also affected t h e i r decision  a v o i d t e l l i n g people about the  diagnosis.  As soon as you say y o u ' r e s c h i z o p h r e n i c , you f e e l t h i s p a r l o w e r t h a n e v e r y b o d y e l s e . You s o r t o f f e e l l i k e y o u ' v e become a l e s s e r p e r s o n .  85 Some p a r t i c i p a n t s e v e n t u a l l y diagnosis.  came t o t e r m s w i t h  F o r some, c o m i n g t o t e r m s meant  s c h i z o p h r e n i a as a m e d i c a l  the  viewing  problem.  I d o n ' t t h i n k i t s s u c h a b i g d e a l anymore. I've s e e n — remove t h e s t i g m a o f s c h i z o p h r e n i a , i t s a d i s e a s e . I h o p e i t w i l l c h a n g e i n t h e n e x t few y e a r s and p e o p l e w i l l r e a l i z e t h a t i t i s j u s t a chemical problem. It's n o t some s t r a n g e t e r r i b l e t h i n g . F o r o t h e r s , c o m i n g t o t e r m s meant v i e w i n g  t h e word as  r e f l e c t i o n o f s o c i e t y ' s need t o l a b e l and  categorize.  p a r t i c i p a n t s s a i d t h a t i t was words, they One by  " s o c i e t y ' s problem."  acknowledged t h e i r i l l n e s s ,  accepting  t h a t he h a d  other  "label."  "schizophrenia"  i t as a r e f l e c t i o n o f h i s " u n i q u e n e s s . " a l w a y s b e e n " d i f f e r e n t " and  Two  In  but not the  p a r t i c i p a n t came t o t e r m s w i t h t h e w o r d  a  that didn't  He  said  bother  him. I n summary, f o r t h e s e  p a r t i c i p a n t s , being  s c h i z o p h r e n i a meant b e i n g g i v e n a n e g a t i v e stigmatized  label.  and  diagnosed highly  They b e l i e v e d t h a t t h e g e n e r a l p u b l i c  v e r y m i s i n f o r m e d a b o u t s c h i z o p h r e n i a and  with  that the  was  general  p u b l i c t h o u g h t p e o p l e w i t h s c h i z o p h r e n i a were dangerous. Some p a r t i c i p a n t s f e l t initially,  s h o c k e d by t h e d i a g n o s i s a n d  r e j e c t e d i t and  the treatment.  Because  many, of  u n c e r t a i n t y about the response they would r e c i e v e , p a r t i c i p a n t s d i d n o t w a n t t o t e l l many p e o p l e a b o u t diagnosis.  their  Some p a r t i c i p a n t s e v e n t u a l l y came t o t e r m s w i t h  t h e d i a g n o s i s and  f o u n d a way  to deal with i t .  86 I n c o n c l u s i o n , e a c h p a r t i c i p a n t d e s c r i b e d how  being  ill  meant e x p e r i e n c i n g changes i n a r e a s s u c h as t h i n k i n g , p e r c e i v i n g , r e l a t i n g , behaving, s t r e s s tolerance, confidence,  self-esteem,  p a r t i c i p a n t experienced changes, the nature person. by the  and  need f o r s l e e p .  a number o f t h e s e  self-  While  each  characteristic  o f t h e changes were u n i q u e f o r each  A d d i t i o n a l l y , f o r some, c h a n g e s w e r e b r o u g h t a b o u t  s i d e e f f e c t s of medication illness  emotional  episodes.  and  by t h e u n p r e d i c t a b i l i t y  Many p a r t i c i p a n t s d e s c r i b e d  responses to being  ill.  their  Several p a r t i c i p a n t s  d e s c r i b e d v a r i o u s p o i n t s of the i l l n e s s experience. s a i d t h a t during the f i r s t other times.  few  years  they  f e l t worse than  illness.  t h e y were i n t e r e s t e d i n h e l p i n g o t h e r s schizophrenia.  Several  at  l e a r n about  labelled with a  s t i g m a t i z e d d i a g n o s i s t h a t was t h e p u b l i c t o be of the negative  m i s u n d e r s t o o d and  perceived  a s s o c i a t e d w i t h dangerous behavior. connotations  initial  with  negative,  o f t h e d i a g n o s i s , many  u n c e r t a i n t y about t e l l i n g other people about the F o r some, t h e  said  P a r t i c i p a n t s s a i d that being diagnosed  s c h i z o p h r e n i a meant b e i n g  r e p o n s e t o t h e d i a g n o s i s was  by  Because expressed  diagnosis. shock  and  E v e n t u a l l y some i n d i v i d u a l s came t o t e r m s w i t h  t h e d i a g n o s i s and diagnosis.  Some  Some a l s o m e n t i o n e d t h a t a t a c e r t a i n p o i n t  t h e y w a n t e d t o l e a r n more a b o u t t h e  rejection.  of  found a comfortable  way  to view  the  87 Work-related  Experience  P a r t i c i p a n t s d e s c r i p t i o n s o f t h e i l l n e s s e x p e r i e n c e were interspersed within the descriptions of the work-related experience.  Many p a r t i c i p a n t s b e g a n d i s c u s s i o n o f t h e w o r k -  r e l a t e d e x p e r i e n c e by d e s c r i b i n g what t h e y were d o i n g a t t h e time they f i r s t the  got i l l .  This often lead t o a discussion of  e x p e r i e n c e o f l o o k i n g f o r work.  L o o k i n g f o r Work For during  some i n d i v i d u a l s , t h e o n s e t o f t h e i l l n e s s  educational  occurred  programs a t u n i v e r s i t y o r c o l l e g e .  The f i r s t t i m e I r e a l l y became i l l was a t u n i v e r s i t y when I s t a r t e d t o h e a r v o i c e s a n d was s l e e p i n g m o s t o f t h e d a y . A n d f r i e n d s s u g g e s t e d t h a t I go t o s e e a d o c t o r and I guess you'd s a y t h a t ' s t h e f i r s t t i m e I became i l l — b u t I w a s n ' t w o r k i n g a s I s a i d , I was i n school. When I was 2 4 , I was i n b a k i n g s c h o o l a n d I knew I n e e d e d some k i n d o f h e l p . A n d I knew I n e e d e d t o c h a n g e t h e way I was f e e l i n g . For  others  t h e o n s e t was d u r i n g  a p e r i o d o f employment.  I worked as a desk c l e r k a t a n a t i o n a l p a r k , and t h e n I worked i n an i c e f a c t o r y i n a n a t i o n a l p a r k — a n d I j u s t s t a r t e d t o g e t t h e symptoms. I f i r s t o f a l l s t a r t e d f e e l i n g t h a t p e o p l e were t r y i n g to d r u g me t h r o u g h my f o o d . . . I was a c t u a l l y w o r k i n g a t the time. I n most c a s e s , o n s e t o f t h e i l l n e s s r e s u l t e d , e v e n t u a l l y , i n the person having t o stop  o r q u i t work o r s c h o o l .  p a r t i c i p a n t s a i d , " s o t h a t f o r c e d me t o l e a v e because o f t h e people there.  their  plans.  this job  I h a d no t r u s t f o r t h e m . "  P a r t i c i p a n t s who w e r e i n s c h o o l disrupted  A s one  a l s o found t h a t t h e i l l n e s s  88 My mom d e c i d e d i t w o u l d be a g o o d i d e a i f I w e n t i n t o t h e h o s p i t a l , j u s t t o s e e w h a t was g o i n g on. So t h e y b o o k e d me i n t o t h e h o s p i t a l and I h a d t o p u l l o u t o f school. Some i n d i v i d u a l s w e r e a b l e t o r e s u m e s c h o o l o r g e t a new right  job  away. I got f i r e d . So t h e n t h a t v e r y d a y I w e n t t o p i c k up my dog. He was a t t h e k e n n e l . . . I s a i d , " I j u s t g o t f i r e d " , a n d s h e s a i d , "oh we n e e d somebody." So I s t a r t e d working f o r her i n the kennel. But t h e y were r e a l l y n i c e about i t a t [ t h e c o l l e g e ] b e c a u s e t h e y l e t me come b a c k t o f i n i s h : o f f t h e h a l f t h a t I m i s s e d — a f t e r I h a d t h e a t t a c k , when I was d i a g n o s e d w i t h s c h i z o p h r e n i a — a n d I s t i l l went back t o school.  For others the onset a longer p e r i o d of  of t h e i l l n e s s p r e c l u d e d work p l a n s f o r  time.  I t i n t e r f e r r e d w i t h t h e s c h o o l and t h e j o b s t h a t summer. F o r i n s t a n c e I d i d n ' t w o r k t h a t summer b e c a u s e I w a s n ' t f e e l i n g very w e l l . So I g u e s s y o u ' d s a y i t i n t e r f e r e d w i t h my p l a n s t o w o r k e v e n t h o u g h I w a s n ' t w o r k i n g a t the time. I h a d a n e r v o u s b r e a k d o w n when I was 2 1 , w h i c h l e a d t o a s u i c i d e a t t e m p t and e v e r y t h i n g e l s e . And a f t e r t h a t I was s o d e p r e s s e d and t h e symptoms w e r e s o s e v e r e t h a t I c o u l d n ' t work f o r s e v e r a l y e a r s . Some o f t h e p a r t i c i p a n t s started  resumed s c h o o l but t h e n e v e n t u a l l y  l o o k i n g f o r work.  t h e y ' d had  p r i o r t o onset  participants,  No p a r t i c i p a n t s of the i l l n e s s .  then, the onset  beginning of the experience  of i l l n e s s  resumed t h e work F o r most  signalled  the  o f l o o k i n g f o r work.  In job hunting, p a r t i c i p a n t s g e n e r a l p u b l i c such as r e s p o n d i n g  u s e d methods open t o  the  t o newspaper adds, a p p l y i n g  89  a t t h e C a n a d a Employment a n d I m m i g r a t i o n C o m m i s s i o n ( C . E . I . C . ) / t a l k i n g t o f r i e n d s , and pounding  t h e pavement t o  seek o u t p r o s p e c t i v e employers. Some o f t h e m h a v e a c t u a l l y b e e n g o i n g a r o u n d t o s t o r e s a n d l e a v i n g my r e s u m e . One o r t w o I h a v e f o u n d b y a d s . One o f my g o o d j o b s was t h r o u g h a f r i e n d who t o l d me s o m e t h i n g was c o m i n g a v a i l a b l e . One o f t h e m was l i t e r a l l y t a l k i n g t o a s t o r e owner a n d s a y i n g I was l o o k i n g f o r a j o b . A n d t h e y w e r e l o o k i n g f o r someone t o t y p e and i t j u s t worked o u t l i k e t h a t . . . A l o t o f them was s c r a m b l i n g a r o u n d m y s e l f . F o r i n s t a n c e g o i n g t o t h e department o r going t o t h e s t o r e — f i n d i n g out p l a c e s t h a t I t h o u g h t I m i g h t l i k e t o w o r k a n d g o i n g t o them. V e r y r a r e l y had i t been t h r o u g h t h e employment c e n t e r — b u t u s u a l l y o n my own, b e g g i n g . Looking i n t h e paper f o r d i f e r e n t j o b o p p o r t u n i t i e s . T h e r e a r e a number o f b u s i n e s s e s y o u c a n s t a r t w i t h j u s t a few d o l l a r s . I've g o t t e n a l o t o f i t t h r o u g h t h e employment c e n t e r . You s e e a j o b on t h e b o a r d , a n d — l i k e t h e j o b I ' v e g o t now, i t s a i d f i v e d o l l a r s t o s t a r t , a n d I t h o u g h t w e l l I c a n s t a r t w i t h t h a t a n d w o r k my way u p . O t h e r s made u s e o f s e r v i c e s g e a r e d t o w a r d s mental h e a l t h problems,  individuals  such as j o b c l u b s and  s e r v i c e s and o t h e r s community m e n t a l h e a l t h  with  rehabilitation services.  I j u s t k e p t t r y i n g a l l t h e s e j o b s , and went t o t h e j o b c l u b and f o u n d something I l i k e d t o d o — j u s t l i k e t r y i n g out d i f f e r e n t jobs. I went t o [a community program] and d i d a c o u r s e t h e r e . T h e y g e t y o u a n a c t u a l j o b . T h e y g o t me a j o b . The j o b c l u b I w e n t t o — i t s a s p e c i a l i z e d j o b c l u b . W e l f a r e p a y s them f o r g e t t i n g w e l f a r e p e o p l e o n j o b s , and t h e y a l s o t a k e s p e c i a l needs p e o p l e . P a r t i c i p a n t s i n d i c a t e d t h a t a t t i m e s i t was n o t d i f f i c u l t t o f i n d another job. I j u s t go g e t t h e m — g o down t o t h e j o b c e n t e r a n d i f I s e e one I l i k e — t a l k t h e g u y i n t o g i v i n g i t t o me. What a n y b o d y c a n d o . So y o u h a v e n ' t h a d a n y d i f f i c u l t y  90 g e t t i n g j o b s ? No, b u t t h e n I d o n ' t t h i n k t h a t I'm t h a t a c u t e a c a s e a n d when I go f o r a j o b , I ' v e n e v e r b e e n i n a p o s i t i o n w h e r e I'm i l l a t t h e t i m e . I f U I r a n o u t I ' d g o o n w e l f a r e , b u t I was n e v e r o n welfare f o r more t h a n a m o n t h o r s o . . . B y t h e n I w o u l d have found another j o b . There were s e v e r a l e x p l a n a t i o n s f o r t h e l a c k o f d i f f i c u l t y i n f i n d i n g work.  Some p a r t i c i p a n t s w e r e i n v o l v e d i n l o o k i n g f o r  w o r k i n t h e 1 9 7 0 ' s , a n d a s one p a r t i c i p a n t e x p l a i n e d , " j o b s weren't  t o o hard t o g e t i n t h o s e days, back i n t h e 70's,  e a r l y 70's."  A t o t h e r t i m e s , i t was a m a t t e r o f b e i n g a t t h e  r i g h t p l a c e a t t h e r i g h t time, as t h e f o l l o w i n g  statement  exemplifies. I k i n d o f w a l k e d i n t h e r e a n d I t h o u g h t i f I ' d be w o r k i n g t h e r e I ' d be l u c k y — w e l l I ' l l g o f o r t h e i n t e r v i e w anyway...I t a l k e d t o h i m , and he d i d n ' t l o o k a t my w o r k h i s t o r y o r a n y t h i n g . . . H e s a i d y o u g e t t h i s j o b a n d how a b o u t y o u s t a r t t o m o r r o w . Yet another e x p l a n a t i o n f o r t h e lack of d i f f i c u l t y work i s t h a t p a r t i c i p a n t s would As one p a r t i c i p a n t s a i d , do."  She a d d e d l a t e r ,  i n finding  o f t e n t a k e any t y p e o f j o b .  " I kept working a t anything I could  "Everytime I get out of a j o b — I  go t o manpower a n d s a y , ok I ' l l  t r y this."  would  Another  p a r t i c i p a n t ' s comment r e f l e c t s t h e a t t i t u d e t h a t , a t t i m e s , any  j o b was b e t t e r t h a n no j o b . B u t when y o u ' r e i l l a n y j o b , a n y a p a r t m e n t , a n y c a r , anything i s fine. I t sj u s t a matter of d i f f e r e n t levels. I g u e s s i t ' s human n a t u r e . I f you don't have any j o b , t w o d a y s a week l o o k s g o o d . I f y o u h a v e a t w o d a y s a week j o b , y o u m i g h t w a n t t h r e e , f o u r , o r f i v e d a y s a week. A t o t h e r t i m e s f i n d i n g a j o b was more d i f f i c u l t .  p a r t i c i p a n t mentioned  One  t h a t i t was h a r d t o g e t a j o b a t t h e  91 c u r r e n t t i m e b e c a u s e , a s he s a i d , " t h e r e ' s  the fact that  Canada's i n r e c e s s i o n and unemployment i s s o h i g h . " P a r t i c i p a n t s a l s o f o u n d i t d i f f i c u l t t o f i n d a j o b when t h e y w e r e l o o k i n g f o r a j o b t h a t met c e r t a i n c r i t e r i a . I t ' s very hard t o get i n t o these places l i k e the [gallery]. And i t s h a r d t o g e t a j o b a t s o m e t h i n g y o u w a n t , r i g h t away. So I k e p t w a i t i n g a n d w a i t i n g . T h e r e j u s t d o e s n ' t seem t o be e n o u g h p a r t - t i m e j o b s o u t there. I c o u l d n ' t make i t o n my own. I couldn't f i n d a p a r t - t i m e j ob. I've always had t r o u b l e f i n d i n g p a r t t i m e work. I t seems l i k e f i n d i n g t h e c o r r e c t j o b s i t u a t i o n o n my own w i t h out b e i n g i n a s u p p o r t i v e work p r o g r a m — i t ' s almost i m p o s s s i b l e t o f i n d t h a t k i n d of easy t a s k s i t u a t i o n w i t h o u t t o o much s t r e s s o r s t r a i n . In applying  f o r j o b s , two a r e a s o f c o n c e r n were  the  j o b i n t e r v i e w and f i l l i n g  the  a p p l i c a t i o n form.  out the medical  evident;  information  F o r some, one o f t h e d i f f i c u l t  a b o u t l o o k i n g f o r w o r k was t h e j o b i n t e r v i e w .  on  parts  One  p a r t i c i p a n t i n d i c a t e d t h a t he d i d n ' t want t o o v e r e m p h a s i z e his  s k i l l s b e c a u s e h e m i g h t g e t a j o b t h a t was t o o d i f f i c u l t . Job i n t e r v i e w s were always t o u g h because I always f e l t — l i k e I had h i g h q u a l i f i c a t i o n s , grades, academic wise, b u t I d i d n ' t w a n t t o s e l l m y s e l f t o o much b e c a u s e t h e t h e y — b e c a u s e I had t h i s problem. But I couldn't r e a l l y mention t h a t I had t h i s — s o i f I s o l d m y s e l f t o o m u c h — then I j u s t q u i t o r something.  A n o t h e r p a r t i c i p a n t ' s comment e x e m p l i f i e s t h e d i f f i c u l t y s e v e r a l p a r t i c i p a n t s had i n d e t e r m i n i n g periods  that  how t o e x p l a i n  o f unemployment.  I t ' s h a r d enough t o g e t a j o b f o r a n o r m a l p e r s o n — there's competition. But i f you have e x t r a t h i n g s t o t r y a n d e x p l a i n — w h y a r e t h e r e g a p s i n y o u r r e s u m e ? , why d o n ' t y o u h a v e v e r y many r e f e r e n c e s ? , w h a t d i d y o u do  92 f o r t h e t h r e e y e a r s when t h e r e ' s n o t h i n g on y o u r r e s u m e ? — a l l t h e s e l i t t l e t h i n g s . And y o u h a v e t o t h i n k o f ways t o e x p l a i n them. Some p a r t i c i p a n t s d e a l t w i t h t h e d i f f i c u l t i e s by  c o v e r i n g up  their  just  described  unemployment.  I t r i e d t o s a y I was n o r m a l . I t r i e d t o f i l l i n my r e c o r d — a l l t h e b l a n k s p o t s — m a k e a resume and f i l l a l l the blank spots. The about the  d e c i s i o n of whether t o t e l l i l l n e s s was  a prospective  another concern.  d i s c u s s e d , p a r t i c i p a n t s f e l t as  As  employer  previously  i f t h e y had  been  labelled  w i t h a t e r r i b l e w o r d and  t h e y were c o n c e r n e d about  people t h e i r diagnosis.  This affected t h e i r behavior  applying f o r jobs. situations, informed  With the exception  work in  o f two  telling when  specific  i n a l l t h e many j o b a p p l i c a t i o n s no p a r t i c i p a n t  p r o s p e c t i v e employers about the  illness.  p a r t i c i p a n t e x p l a i n e d t h a t she w o u l d t e l l employer about her  illness,  b e c a u s e she  h e l p t h a t person l e a r n about the an e m p l o y e r w o u l d n ' t h i r e h e r  a  One  prospective  t h o u g h t she  illness.  She  could  added t h a t i f  s i m p l y because she  has  s c h i z o p h r e n i a , she w o u l d n ' t want t o work f o r t h a t  employer.  I f the employer wants t o l e a r n something about s c h i z o p h r e n i a , I c a n h e l p them l e a r n . I f he d i d n ' t a c c e p t i t I w o u l d n t w a n t t o w o r k t h e r e anyway. In the second s i t u a t i o n , the p a r t i c i p a n t i n d i c a t e d t h a t had  been so d e s p e r a t e  actually help Immigration  i f he  f o r a j o b t h a t he d e c i d e d  i t might  t o l d a s t a f f p e r s o n a t Employment  C a n a d a ( E . I . C . ) t h a t he h a d  he  schizophrenia.  and He  93 d i s c l o s e d t h e i n f o r m a t i o n t o a s t a f f p e r s o n a t C.E.I.C.  and  t h e p e r s o n gave him a j o b . As m e n t i o n e d , f r e q u e n t l y p a r t i c i p a n t s d i d n o t p r o s p e c t i v e employers about t h e i l l n e s s . s t a t e m e n t s s u c h a s : " I d o n ' t t e l l my s c h i z o p h r e n i c ; " " I am s t i l l wouldn't t e l l didn't t e l l  anybody;"  them.  d o n ' t know I'm  worried  inform  P a r t i c i p a n t s made  bosses  I'm  i f I took another job.  "When I a p p l i e d f o r t h e j o b , I  I didn't t e l l  schizophrenic.  them a n y t h i n g ; "  I haven't t o l d  and  "They  them."  There were s e v e r a l r e a s o n s c i t e d f o r not i n f o r m i n g employer.  Participants  I  believed that i f they t o l d  the  the  employer they wouldn't get h i r e d . Y o u c a n ' t do a l o t o f j o b s i f y o u h a v e t h e l a b e l schziophrenia attached. You j u s t d o n ' t g e t h i r e d . I t ' s hard g e t t i n g a job at the best of times but t o l e t somebody know y o u ' v e g o t p r o b l e m s , i t ' s e v e n h a r d e r . And i t ' s v e r y e m b a r r a s s i n g t o — v e r y e m b a r r a s s i n g . T h i n k o f t h e c h a n c e s o f g e t t i n g a j o b i f y o u p u t down s c h i z o p h r e n i a on a n a p p l i c a t i o n . I t h i n k m o s t r e s u m e s go i n t o t h e g a r b a g e i n t h e f i r s t p l a c e b u t t h a t one w i l l get burned i n the c i g a r e t t e ashtray. I t ' s j u s t not a nice thing. A f e w p a r t i c i p a n t s t h o u g h t t h a t some e m p l o y e r s m i g h t h i r e them.  But even t h e s e p a r t i c i p a n t s t h o u g h t t h a t most  employers wouldn't h i r e a person w i t h  schizophrenia.  People are i n d i v i d u a l s . L i k e one e m p l o y e r m i g h t g i v e you a b r e a k a c t u a l l y — i f s a y an i n t e r v i e w e r h a d — o r s a y an e m p l o y e r had p e r s o n a l e x p e r i e n c e w i t h s c h i z o p h r e n i a , y o u know. He m i g h t t a k e p i t y on y o u o r s o m e t h i n g , I d o n ' t know. I d o n ' t t h i n k i t w o u l d w o r k o u t i n m o s t cases t h o u g h — m i g h t j u s t say f o r g e t i t .  94 Some p a r t i c i p a n t s b e l i e v e d t h a t e v e n i f t h e y h a d  better  q u a l i f i c a t i o n s than o t h e r a p p l i c a n t s , because of  their  illness,  they wouldn't  get  hired.  I f I come o u t w i t h g r a d e s o f 95 p e r c e n t i n e v e r y t h i n g I d i d , and a guy came o u t w i t h 75 p e r c e n t and he h a d no m e n t a l i l l n e s s , and I h a d a m e n t a l i l l n e s s , a n d we b o t h w e n t f o r t h e same j o b , who would you g i v e t h e j o b t o ? Many p a r t i c i p a n t s t h o u g h t t h e y w o u l d n ' t s a i d t h e y had  get h i r e d ,  i f they  s c h i z o p h r e n i a , because the employer would doubt  t h e i r a b i l i t y t o f u n c t i o n s a f e l y and r e s p o n s i b l y . T h e r e m u s t be a number o f j o b s s a y w h e r e s a f e t y i s i n v o l v e d , where t h e y wouldn't want t o t a k e a chance o f h a v i n g y o u — o r say d e a l i n g w i t h c h i l d r e n o r d e a l i n g w i t h m a c h i n e r y — w h e r e i f your p e r c e p t i o n s a r e out, they don't want you e n d a n g e r i n g o t h e r p e o p l e . L i k e some o f u s a r e i n p o s i t i o n s o f r e s p o n s i b i l i t y and i f t h e y d o n ' t know t o o much a b o u t m e n t a l i l l n e s s t h e n r i g h t away t h e y ' r e g o i n g t o b a c k o f f , i f t h e y know y o u h a v e one. E s p e c i a l l y i f you're b o o k k e e p i n g — a l l those b o o k s and a c c o u n t s and s t u f f . . . L i k e t h e y t h i n k y o u ' r e going c r a z y or something. They won't g i v e you t h e r e s p o n s i b i l i t y . . . So I t h i n k i t s a l e g i t i m a t e c o n c e r n about t e l l i n g your employer. I f I ' d a d m i t t e d i t i n a j o b i n t e r v i e w , t h e y may h a v e h a d s e c o n d t h o u g h t s and w o r r i e d w h e t h e r I c o u l d do t h e j o b a n d n o t h i r e d me f o r t h a t r e a s o n . Also,  i t was  perceived t h a t i n the workplace, w i t h the  l i n e being p r o f i t , who  might get i l l  employers  wouldn't  want t o h i r e  bottom  someone  and n o t be a b l e t o h a n d l e t h e i r s h a r e  of  t h e work. See t h e e m p l o y e r i s t r y i n g t o make y o u w o r k 110 p e r c e n t s o he c a n make a p r o f i t . And y o u ' r e g o i n g t o go t o h i m and s a y I c a n o n l y w o r k 70 p e r c e n t . Um—there's a real p r o b l e m r i g h t t h e r e . I know i f I e v e r e m p l o y e d a n y b o d y i n p r i v a t e b u s i n e s s , I'm i n b u s i n e s s t o c o m p e t e w i t h o t h e r c o m p a n i e s t h a t a r e g o i n g f u l l s t i n k and p u t t i n g o u t 110 p e r c e n t . And y o u g o t somebody o n l y c a p a b l e o f p u t t i n g o u t 70 p e r c e n t . That's d i f f i c u l t , because t h a t  95 a f f e c t s t h e people around you as w e l l . t h e r e ' s a whole bunch o f y o u s i t t i n g a t i n an o f f i c e and t h i s one guys c h e c k i n g a f t e r n o o n because he dosen't f e e l w e l l , going t o f e e l a l i t t l e out of j o i n t .  It's like i f d i f f e r e n t desks o u t every second hay everybody's  B e i n g b u s i n e s s o r i e n t e d , I know t h a t I'm g o i n g t o l o s e more money o n t h e g u y t h a t ' s g o t a m e n t a l i l l n e s s t h a n I have on t h e guy t h a t doesn't. T h a t ' s t h e way I w o u l d look a t i t . So I t h i n k t h a t way. I j u s t c a n ' t h e l p t h i n k i n g I w o u l d n ' t t e l l them. P a r t i c i p a n t s f e l t t h a t l a c k o f knowledge and m i s u n d e r s t a n d i n g of  t h e i l l n e s s a f f e c t e d employers'  d e c i s i o n s about  hiring  someone w i t h s c h i z o p h r e n i a . I f y o u t e l l them y o u ' r e s c h i z o p h r e n i c t h e n t h e y ' l l r e a l l y g e t w o r r i e d a n d r e a l l y t h e y d o n ' t know w h a t i t i s t h a t t h e y ' r e w o r r i e d about. They j u s t h e a r d t h i s word and i t ' s p r o b a b l y been m i s u s e d o r w h a t e v e r . I f I was t o a p p l y somewhere a g a i n — h o w u n d e r s t a n d i n g w o u l d t h e o n e who i s g o i n g t o h i r e m e — w o u l d h e b e a b l e to understand t h a t t h e m e d i c a t i o n r e a l l y does c o n t r o l it. The hired  common i m p r e s s i o n t h e n , was t h a t t h e y w o u l d n ' t g e t  i f p e o p l e knew t h e y h a d s c h i z o p h r e n i a .  Some  s p e c u l a t e d t h a t even i f they d i d g e t h i r e d , h a v i n g the employer about t h e i l l n e s s ,  informed  t h e y w o u l d be t r e a t e d  "differently". That's another reason I t h i n k I don't t e l l people about my i l l n e s s . B e c a u s e i f t h e y know a n y t h i n g t h e y s a y , " I s t h i s t o o hard f o r you?" " I s t h a t t o o hard f o r you?" I mean, i f y o u t o l d t h e g e n e r a l o f f i c e p e r s o n e l t h a t was t h e p r o b l e m , and t h e y w e r e n ' t aware o f i t , you'd f r e a k them o u t . I f you worked i f a b i g o f f i c e t h a t employed a l o t o f p e o p l e a n d i t was common k n o w l e d g e t h a t y o u r e s c h i z o p h r e n i c , I t h i n k they would t r e a t you a l i t t l e different. x  96 One p a r t i c i p a n t d e s c r i b e d a s i t u a t i o n f r o m h i s own w o r k experience i n which a co-worker w i t h s c h i z o p h r e n i a treated  was  "differently".  W e l l when I was w o r k i n g a t s h i p p i n g a n d r e c i e v i n g a n o t h e r g u y g o t h i r e d who was s c h i z o p h r e n i c . The b o s s u s e d t o t a l k t o h i m a l l t h e t i m e a s i f h e was a dumby a n d h e n e v e r s t o p p e d . He was a l w a y s e x p l a i n i n g a n d r e e x p l a i n i n g t h i n g s t o him. I c o u l d n ' t handle t h a t . Some p a r t i c i p a n t s w e r e c o n c e r n e d a b o u t c o - w o r k e r s ' r e p o n s e s . For example, the  o n e p e r s o n was w o r r i e d  i n f o r m a t i o n t o t a k e advantage  about co-workers  using  o f him.  One o f t h e t h i n g s t h a t r e a l l y s c a r e s me a b o u t t e l l i n g people you're schizophrenic i s t h a t they can r e a l l y t u r n a g a i n s t you. There's a l o t o f s c a r r y people out there. There's a l o t o f nasty v i n d i c t i v e p e o p l e . . . I d o n ' t r e a l l y w a n t p e o p l e t o know b e c a u s e t h e y c o u l d m a n i p u l a t e you so e a s i l y i f you're f e e l i n g bad and t h e y wanted t o . A n o t h e r p a r t i c i p a n t was w o r r i e d t h a t c o - w o r k e r s w o u l d him  i n low esteem,  hold  i f t h e y knew a b o u t h i s i l l n e s s .  I t reduces your c r e d i b i l i t y . When y o u w o r k f o r somebody, I d o n ' t c a r e w h a t p o s i t i o n y o u ' r e i n , a n d t h e h i g h e r up y o u g o i n a company o r a p r o f e s s i o n s u p p o s e d l y y o u h a v e a h — n o w when y o u h a v e s c h i z o p h r e n i a y o u remove you c r e d i b i l i t y . T h e y v i e w y o u a s a weak l i n k . P a r t i c i p a n t s d i d n o t inform p r o s p e c t i v e employers about t h e i l l n e s s because they b e l i e v e d t h a t they wouldn't g e t h i r e d , o r i f h i r e d , t h e y w o u l d be t r e a t e d d i f f e r e n t l y . p a r t i c i p a n t s had another reason f o r n o t i n f o r m i n g employers.  Some prospective  They b e l i e v e d t h a t i n f o r m a t i o n about m e d i c a l  p r o b l e m s , s u c h a s s c h i z o p h r e n i a , was p e r s o n a l t o do w i t h t h e j o b .  and had n o t h i n g  97 L i k e t h a t ' s s o r t o f y o u r p e r s o n a l l i f e and y o u s h o u l d n ' t h a v e t o go t o y o u r b o s s u n l e s s i t a f f e c t s y o u r w o r k and t h a t s o r t of thing. You've g o t enough w o r r i e s as i t i s , r a t h e r — r a t h e r t h a n s a y i n g , "by t h e way I'm s c h i z o p h r e n i c . " "Oh r e a l l y ! W e l l we w o n ' t s e e y o u t o m o r r o w . " You d o n ' t n e e d t h a t . I f a p e r s o n i s n ' t d o i n g w e l l a t t h e i r j o b , maybe t h e y n e e d t o be l a i d o f f . T h a t ' s f o r a n y b o d y — b u t n o t j u s t b e c a u s e y o u ' v e g o t t h e name a t t a c h e d t o i t . I d o n ' t t h i n k t h e y n e e d t o know. I t h i n k t h a t ' s something t h a t ' s p r i v a t e . I don't t h i n k i t would a t a l l t o l e t t h e m know. One  p a r t i c i p a n t s a i d she had  asked  other people  t o l d employers about t h e i r schzophrenia. t h e i l l n e s s was  whether  They a l s o  p r i v a t e and d i d n ' t n e e d t o be  help they  thought  revealed.  I a s k e d t h e m w h a t t h e y ' d done a b o u t t e l l i n g t h e i r e m p l o y e r and t h e y s a i d , "No. I t ' s none o f t h e i r b u s i n e s s a s l o n g a s y o u do y o u r j o b . " Some p a r t i c i p a n t s d i d n o t l i k e h a v i n g t o c o n c e a l illness.  As one  l y i n g about i t .  individual said,  " I don't t h i n k I'd  "Other p a r t i c i p a n t s f e l t c o m f o r t a b l e  the like with  this decision. So I c h o s e n o t t o t e l l t h e m when I w e n t t o t h e s h i p p i n g and r e c i e v i n g . I d i d n ' t w a n t t h e m t o know. They w e r e n ' t a w a r e o f i t . C a u s e I s o r t o f r e j e c t i t . From what I've seen o f o t h e r p e o p l e , t h e y ' r e n o t a c c e p t e d . So I j u s t t r y t o go my m e r r y way. Try t o avoid i t . M o s t w e r e c e r t a i n t h a t i t was  the best d e c i s i o n .  T h e y s a y , " h a v e t h e r e b e e n any s e r i o u s m e d i c a l p r o b l e m s i n t h e p a s t ? " and I e i t h e r l e f t i t b l a n k , w h i c h I d o n ' t know i f I s h o u l d o r s h o u l d n o t h a v e . But I'd put depression. D e p r e s s i o n seems t o be a n i c e c o v e r up, o r c h r o n i c f a t i g u e s y n d r o m e ; a n y t h i n g . . . So I d i d t h e b e s t t h i n g t o do.  98 I n summary, t h e o n s e t o f i l l n e s s s i g n a l l e d f o r a l l p a r t i c i p a n t s t h e b e g i n n i n g o f an e x p e r i e n c e o f r e p e a t e d l y looking  f o r work.  P a r t i c i p a n t s used a wide range o f  r e s o u r c e s when l o o k i n g employment s e r v i c e s of  services  services  f o r work, i n c l u d i n g  and i n f o r m a l  networking.  T h e y made u s e  a v a i l a b l e t o t h e g e n e r a l p u b l i c as w e l l as  designed f o rpeople with  t i m e s i t was n o t d i f f i c u l t  mental i l l n e s s .  f i n d i n g a job,  At certain  p a r t i c u l a r l y i nthe  1 9 7 0 * s a n d p a r t i c u l a r l y when p a r t i c i p a n t s At  specialized  a c c e p t e d any j o b .  o t h e r t i m e s i t was more d i f f i c u l t t o f i n d a j o b ,  p a r t i c u l a r l y when p a r t i c i p a n t s w e r e more s e l e c t i v e a b o u t t h e work c o n d i t o n s .  Participants d i d not ususally  p r o s p e c t i v e employers about t h e i l l n e s s . f o r n o t t e l l i n g employers included; t h e y w o u l d be t r e a t e d  The t h r e e  t o employers.  d i f f i c u l t y k n o w i n g how t o d e a l w i t h  need t o  P a r t i c i p a n t s had  q u e s t i o n s about t h e i r  and about t h e i r work h i s t o r y .  " c o v e r e d up" t h e i r i l l n e s s by f i l l i n g Others t o l d employers t h a t  reasons  they wouldn't get h i r e d ,  d i f f e r e n t l y , and t h e y d i d n ' t  give personal information  abilities  inform  Some - p a r t i c i p a n t s  i n gaps i n t h e resume.  t h e y h a d some o t h e r  illness.  W o r k i n g Day t o Day As  indicated  from t h e p r e v i o u s d i s c u s s i o n ,  p a r t i c i p a n t s had been a b l e t o o b t a i n  jobs.  a l l the  Participants  d e s c r i b e d some o f t h e i r d a y t o d a y e x p e r i e n c e s a t t h e s e Many o f t h e c h a n g e s e x p e r i e n c e d w i t h  jobs.  the i l l n e s s affected the  99 day  t o day  job experience.  For  some, t h e c h a n g e s i n t h i n k i n g  and  p e r c i e v i n g a f f e c t e d t h e d e s i r e t o go  t o work.  I f o u n d t h a t I t h o u g h t e v e r y b o d y was s p e a k i n g a b o u t me. So t h a t was r e a l l y h a r d t o g e t up and go t o w o r k e v e r y d a y , b e c a u s e y o u a l w a y s f e l t bad a b o u t g o i n g t o work. I f e l t f a i r l y unreal being there. I felt a c t i n g t o be t h e r e b e c a u s e — f i r s t o f a l l , symptoms was t h a t I h a d a s t r a n g e f e e l i n g at a l l . I mean b e i n g a p e r s o n . . . S o b e i n g t h i s r o l e was e v e n h a r d e r t h a n b e i n g i n my w o u l d n ' t have t o p r e t e n d w i t h anybody.  l i k e I was p a r t o f my of being here a person i n room w h e r e I.  I know t h a t I'm g o i n g t o go i n t o t h a t [ p a r a n o i a ] . I know i t ' s g o i n g t o g e t bad. You pop a p i l l b u t y o u know t h a t i t t a k e s q u i t e a w h i l e t o w o r k and y o u d o n ' t w a n t t o go t o w o r k . You d o n ' t w a n t t o be a r o u n d p e o p l e . You f e e l l i k e y o u j u s t w a n t t o s t a y home and do n o t h i n g . Once a t w o r k c h a n g e s i n t h i n k i n g and made i t d i f f i c u l t t o do  the  perceiving  job e f f e c t i v e l y .  i n t e r f e r e d w i t h some i n d i v i d u a l s ' m o t i v a t i o n needed t o b e g i n the  The and  sometimes illness energy  work.  T h e r e ' s a n o t h e r p a r t t h a t comes i n t o p l a y a t w o r k and t h a t i s — i t ' s n o t day d r e a m i n g and i t ' s n o t s l e e e p i n g . S o m e t h i n g e l s e w h e r e y o u ' l l be s i t t i n g a t t h e d e s k b l a n k . I t ' s k i n d o f a no m o t i v a t i o n , and y o u ' l l s i t t h e r e f o r an h o u r o r two, s l i g h t l y d o s e and i t ' s l i k e , t h e b r a i n j u s t k i n d o f s h u t s down. At  other  t i m e s t h e s e changes i n t e r f e r e d w i t h the  c a r r y out work  ability  to  tasks.  I t ' s d e f i n i t l y h a r d t o w o r k when y o u ' r e f e e l i n g bad. I t ' s hard to think s t r a i g h t . I t ' s hard to organize. I t ' s h a r d t o p u t t h i n g s i n p e r s p e c t i v e o f w h a t h a s t o be done first. I f you've got t h i s s t u f f r a c i n g around i n your head-p e o p l e w a n t t o k i l l y o u , and t h i s guy [ t h e e m p l o y e r ] h e ' s o n l y s e n d i n g me h e r e b e c a u s e he w a n t s t o s e t me up; s o I'm a l o n e t h e r e . You know t h a t k i n d o f t h i n g . I t ' s v e r y h a r d t o c o n c e n t r a t e on w h a t y o u ' r e d o i n g b e c a u s e s o much e l s e i s r u n n i n g a r o u n d i n y o u r h e a d .  100 The as w e l l .  decreased  a b i l i t y t o t o l e r a t e s t r e s s a f f e c t e d work  Sometimes t h e work environment  e x p e c t a t i o n s became o v e r w h e l m i n g  and  work  f o r a number o f  participants. I s t a r t e d w i t h t h e l e t t e r s , and I s t a r t e d d o i n g q u i t e h a p p i l y , a n d t h e n o f c o u r s e t h e man came a r o u n d a n d s a i d , "we'd l i k e y o u t o go a b i t f a s t e r " , b e c a u s e i t was p i l i n g up. I g u e s s I was s l o w i n g down. The more r e p e t i t i v e i t became, I w o u l d s t a r t l o o k i n g a t t h e l e t t e r s and I c o u l d n ' t r e a d . A s t h e h o u r s w e n t o n , i t was l i k e l o o k i n g a t a f o r e i g n language. So v i s u a l t h i n g s s t a r t e d h a p p e n i n g b e c a u s e I was i n a h u r r y a n d b e c a u s e o f t h e r e p e t i t i v e n e s s o f i t and t h e s t r e s s o f b e i n g a c c u r a t e [and] p u t t i n g i t i n t h e r i g h t s l o t . I s h u t down j u s t l i k e a c o m p u t e r y o u m i g h t s a y , w h e r e I c o u l d n ' t r e a d , and s o i t w e n t s o p a i n f u l l y s l o w t h a t I s t a r t e d g e t t i n g panicky b e c a u s e — I ' l l get scolded b e c a u s e I c a n ' t do t h i s , s o a t l u n c h t i m e I s a i d , "I'm s o r r y I c a n ' t do t h i s , " and I w e n t home. As  i n d i c a t e d i n t h e above d e s c r i p t i o n , t h e s t r e s s from  work s i t u a t i o n sometimes brought  o u t p s y c h o t i c symptoms  as v i s u a l h a l l u c i n a t i o n s o r i l l u s i o n s . p s y c h o s i s came a b o u t w i t h o u t a p p a r e n t person  imcapable  At other times s t r e s s and  the such the  rendered  the  of working thus, the u n p r e d i c t a b i l i t y of  the  e p i s o d e s a f f e c t e d t h e work e x p e r i e n c e . I remember one d a y I was i n t h e o f f i c e t a l k i n g on t h e phone. I t was l i k e my h e a d — t h e i n s i d e o f my h e a d r o l l e d over, l i t e r a l l y . Sort of s h i f t e d . You know what, you e v e r seen a p i l o t ? A j e t p i l o t has a helmet w i t h a b i g v i s e r t h a t d i p s down. I t was l i k e t h e w h o l e i n s i d e o f my h e a d d i p p e d f o r w a r d and I b a s i c a l y was d r a p e d o v e r t h e d e s k , no e n e r g y . I remember t h i s c h a p I know, and h i s e y e s w e r e l i k e p i n k p e a r l s y o u know. He l a t e r s a i d t h a t I was f a i r l y c o h e r e n t b u t n o t r e a l l y t o o i n t u n e w i t h w h a t was g o i n g o n , and he was t a l k i n g l i k e - i t was l i k e i f I was s t a n d i n g i n a d i f f e r e n t room and he was t a l k i n g t o someone e l s e . I e n d e d up h a v i n g a b r e a k d o w n a t w o r k , w h e r e I w e n t t o t h e b a t h r o o m and t o o k t o o t h b r u s h e s a n d h a i r c o m b s and t h r e w them i n t h e garbage. And t h e r e was a n o l d p a i r o f  101  s h o e s a n d I s l i c e d them u p a n d o v e r t u r n e d t h e g a r b a g e a n d I w a s — I d o n ' t know w h e t h e r I was h a l l u c i n a t i n g , b u t I had t h i s r u s h o f energy and I thought I had t o so s o m e t h i n g o n my own. O t h e r changes t h a t a f f e c t e d t h e work e x p e r i e n c e changes i n s e n s i t i v i t y t o s t i m u l i .  included the  T h o s e who h a d a n  i n c r e a s e d s e n s i t i v i t y t o l i g h t a n d s o u n d f o u n d t h a t i t made some j o b s d i f f i c u l t t o d o . I worked a t t h e p a c k i n g house and I had t o wear e a r p l u g s . L i k e they had machinery n o i s e j u s t c o n s t a n t l y and i f I h a d n ' t w o r n e a r p l u g s I'm s u r e I c o u l d n ' t h a v e d o n e t h e j o b . E v e n now when I'm w o r k i n g — l i k e t h e o t h e r d a y I was t r y i n g t o w o r k on t h e c o m p u t e r a n d t h e r e was a l o t o f c l i e n t s c o m i n g a n d t a l k i n g t o me. Like a family came i n w i t h t w o l i t t l e k i d s a n d I f o u n d i t v e r y difficult. I d o n ' t know w h e t h e r my e y e s w e r e b o t h e r i n g me o r t h e noise of the photocopier, but that job only lasted four h o u r s . . . I t was a l s o i n a n e n c l o s e d e n v i r o n m e n t w h e r e t h e r e were a l o t o f n o i s e s such a s — l i k e a i r c o n d i t i o n e r s a n d s o o n . T h e y t e n d t o b o t h e r me. I ' v e always been b o t h e r d a l i t t l e b i t by a r t i f i c i a l l i g h t s . . . . S o t h e o u t s i d e n o i s e s and t h e b i t i f t h e f l i c k e r i n g o f t h e l i g h t s b o t h e r e d me. The c a s h i e r j o b s w e r e , I t h i n k , i r r i t a t i n g b e c a u s e o f t h e c o n s t a n t n o i s e o f t h e m a c h i n e . The t i c k - t i c k - t i c k of t h e b u t t o n s and t h e n o i s e from t h e cash drawer and t h e n o i s e i n t h e s t o r e . . . I t wasn't a p e a c e f u l environment. And r a t h e r t h a n t u n i n g t h o s e o u t , t h o s e became t o o much i n t h e m s e l v e s , o I g u e s s o t h e r p e o p l e t u n e them o u t — t h e y seemed t o be t o o o v e r w h e l m i n g . As  i n d i c a t e d from t h e accounts  provided, the nature of  t h e changes i n t h i n k i n g , p e r c e i v i n g , s e n s i t i v i t y t o s t i m u l i , and  s o on a f f e c t e d each p a r t i c i p a n t s work e x p e r i e n c e s by  interferring,  a t t i m e s , w i t h t h e d e s i r e t o go t o work and t h e  a b i l i t y t o f u n c t i o n a t work.  A l s o i n c l u d e d i n t h e accounts  o f t h e i l l n e s s e x p e r i e n c e were d e s c r i p t i o n s o f changes r e s u l t i n g from m e d i c a t i o n use.  Some o f t h e p a r t i c i p a n t s  102 found  t h a t t h e s e changes a l s o a f f e c t e d t h e day  e x p e r i e n c e . Many s a i d t h a t s i d e e f f e c t s o f  t o day  work  medication,  s p e c i f i c a l l y t h e changes t o energy l e v e l a f f e c t e d t h e work experience, p a r t i c u l a r l y at the beginning of treatment t h e i n d i v i d u a l was  when  f i n d i n g t h e optimum dosage.  The f i r s t s i x m o n t h s , I was s o s l e e p y and s o s l o w everything. T h a t n e v e r h a p p e n e d t o me b e f o r e a n d t h o u g h t I m i g h t n e v e r work a g a i n .  and I  I was t a k i n g 5 mg o f h a l d o l w h i c h i s q u i t e a l o w amount, i n t a b l e t form. But I c o u l d n ' t work. I c o u l d n ' t do anything. I was l i k e a z o m b i e . I was s o l e t h a r g i c . I'm very active when I'm a t w o r k — v e r y f a s t . I really like t o g e t t h i n g s d o n e q u i c k and I j u s t c o u l d n ' t . So I a c t u a l l y j u s t k e p t c o m i n g home. I ' d d r i v e t o w o r k i n t h e m o r n i n g and I * d g e t t h e r e and 1 d s t a r t t o w o r k and I ' d be s o d r u g g e d o u t and I h a d t o come home. 1  I f i n d I'm more u p b e a t i f I'm n o t on a n t i p s y c h o t i c s . . . A n d t h e r e ' s some p h y s i c a l w o r k i n v o l v e d w i t h — w e l l w i t h s p e e d i l y g e t t i n g g r i p s on c l u b s and m a k i n g s u r e y o u do i t i n a r e a s o n a b l e t i m e . You're w o r k i n g w i t h o t h e r p e o p l e t h a t a r e — m o s t o f them r e a l l y a r e n ' t on any m e d i c a t i o n s — m a y b e t a k i n g v i t a m i n s . . . T h e y ' r e r e a l l y n o t on any m e d i c a t i o n s and y o u b e i n g on m e d i c a t i o n y o u h a v e t o h a v e — y o u a l r e a d y know w h a t y o u r n o r m a l was and y o u h a v e t o t h i n k , I'm d o i n g t h i s so slow...And t h e y ' r e t e l l i n g you t h e customers coming b a c k — h a v e you g o t t h a t done y e t . I f I'm on my meds, somebody m i g h t s a y , "come on move e h " , b u t y o u c a n ' t go a g a i n s t t h e meds. The meds c o n t r o l e v e r y t h i n g i n y o u r body b o t h m e n t a l l y and physically. Some p a r t i c i p a n t s n o t i c e d o t h e r s i d e e f f e c t s o f medication,  such  were a t work.  the  a s a s t u f f y n o s e o r a d r y m o u t h , when t h e y  T h e s e d i d n o t seem t o a f f e c t j o b p e r f o r m a n c e  b u t w e r e more o f a  nuisance.  I t ' s l i k e my m o u t h h a n g s o p e n h a l f t h e t i m e , b e c a u s e I c a n ' t b r e a t h e t h r o u g h my n o s e b e c a u s e i t s a l l c l o g g e d up. E v e r y o n e a t w o r k i s a l w a y s t e l l i n g me y o u ' r e catching f l i e s . I know b u t I c a n ' t h e l p i t .  103 I g e t i t [ a d r y mouth] more i f I'm on more meds o r t h e more I t a l k . . . L i k e I k e e p i t [ a d r i n k ] i n t h e b a c k . I don't l i k e t o eat i n f r o n t of customers. When I go b a c k t o g e t something I ' l l have a s i p . Because a l l I need i s a l i t t l e b i t o f t i m e and t h e n I c a n go b a c k a n d t a l k . As  j u s t d i s c u s s e d , p a r t i c i p a n t s d e s c r i b e d how  a f f e c t e d t h e day d i s c u s s e d how  t o day  work e x p e r i e n c e .  The  t h o u g h t t h e y had  reader  will recall  that participants  been l a b e l l e d w i t h a s t i g m a t i z e d d i a g n o s i s .  Because of the p e r c e i v e d most p a r t i c i p a n t s d i d not i n t u r n had  an  stigma  attached  t h e y had  to  schizophrenia,  inform employers about the  illness.  i m p a c t on d a i l y w o r k e x p e r i e n c e s .  p a r t i c i p a n t s d i d not want t o t e l l illness,  Participants also  being diagnosed w i t h schizophrenia a f f e c t e d the  work e x p e r i e n c e .  This  being i l l  co-workers about  Since  their  t o d e a l w i t h d i f f i c u l t work s i t u a t i o n s  alone. T h e r e w e r e t i m e s when I j u s t c o u l d n ' t c o p e . L i k e you've got t o a c t l i k e normal. L i k e p e o p l e come and t a l k t o y o u a n d y o u ' v e g o t t o a c t l i k e e v e r y t h i n g ' s ok. You c a n ' t r e a l l y t u r n a r o u n d t o t h e s e p e o p l e a t w o r k and s a y , " q u i c k man, I t h i n k somebody's t r y i n g t o k i l l me." T h a t was a l o t o f p r e s s u r e . I f you d o n ' t t e l l them y o u ' r e s c h i z o p h r e n i c , you've g o t to s a y , " l o o k , I'm i l l . " And t h e y s a y , " w e l l y o u g e t b a c k t o w o r k . Whats w r o n g w i t h y o u ? " You d o n ' t w a n t t o a p p e a r t o be d i f f e r e n t o r a n y t h i n g . One t i m e when I h a d a s t r e s s a t t a c k and my c h e s t t i g h t e n e d up, t h e y t h o u g h t I was h a v i n g a h e a r t a t t a c k . T h a t was j u s t a s w e l l b e c a u s e I d i d n ' t w a n t t o t e l l t h e m a b o u t my illness. Because they t h a t they  had  d i d n ' t w a n t e m p l o y e r s and  c o - w o r k e r s t o know  s c h i z o p h r e n i a , many p a r t i c i p a n t s f e l t a s  t h e y w e r e p u t t i n g on a f a c a d e o r p r e t e n d i n g this  introduced  additional stress.  though  t o be n o r m a l  and  104 I ' v e b e e n w e l l e n o u g h t o p r e t e n d t h a t I'm n o t i l l a t all. So t h e r e ' s t h e s t r e s s o f b e i n g — o f o n l y b e i n g s a y 70 p e r c e n t w e l l b u t t r y i n g t o f u n c t i o n a t 100 p e r c e n t . So t h a t 30 p e r c e n t i s a r e a l s t r e s s f a c t o r a n d t h e n i t was v e r y h a r d t o e x p l a i n . I was v e r y o f t e n f a t i g u e d o r d i d n ' t w a n t t o do e x t r a t h i n g s . L i k e t h e y ' d say can you w o r k a s a s p a r e , a n d I ' d a l w a y s s a y no. A number e x p l a i n e d t h a t w h i l e t h e y w e r e p r e t e n d i n g t o  be  n o r m a l , t h e y w o r r i e d a b o u t what c o - w o r k e r s t h o u g h t o f them and t h e i r work  performance.  Y o u r m i n d ' s c o n s t a n t l y c l u e i n g i n t o — d o t h e y t h i n k I'm normal? T h i s f a c a d e p r o b l e m i s n o t j u s t w i t h an employer. I t ' s b a s i c a l l y the whole i l l n e s s . A person w a n t s t o k e e p up a p p e a r a n c e s . B u t a t t h e same t i m e y o u s o r t o f — y o u know y o u ' r e n o t f u n c t i o n i n g r i g h t , s o y o u f e e l l i k e y o u ' r e p r e t e n d i n g t o be b e t t e r t h a n y o u a r e . I f e l t l i k e I was i n a p l a y . And a t home I t o o k o f f t h e c o s t u m e a n d c o u l d be m y s e l f a g a i n . So t h e r e was a l o t o f , a s I s a y , p r e t e n d . And i t t o o k a l o t o f e n e r g y . And a l o t o f t i m e I s p e n t t h i n k i n g how I a p p e a r e d t o everyone e l s e . By t h a t I mean I was d o i n g my w o r k b u t t h i n k i n g , i s t h a t p e r s o n t h i n k i n g t h a t I'm g o i n g f a s t e n o u g h on t h e c a s h a n d n o t m a k i n g any m i s t a k e s a n d b e i n g a g o o d s a l e s p e r s o n ? I s t h e m a n a g e r w a t c h i n g me? A l l t h e s e t h i n g s were g o i n g o n — v e r y s e l f - c o n s c o u s . Not o n l y d i d p a r t i c i p a n t s w o r r y about what c o - w o r k e r s o f them and t h e i r j o b p e r f o r m a n c e t h e employer  thought  s e v e r a l were concerned  and c o - w o r k e r s would d i s c o v e r t h e i r  that  secret.  T h e r e ' s one guy t h e r e t h a t m u s t know, b e c a u s e h i s b r o t h e r u s e d t o l i v e i n one o f t h e s e h o u s e s . I don't know i f h i s b r o t h e r h a s s c h i z o p h r e n i a , b u t h i s b r o t h e r knows me t h r o u g h [ t h e c l u b h o u s e ] s o he k n o w s — u n l e s s he has f i r s t hand e x p e r i e n c e o f what i t s l i k e because o f h i s b r o t h e r . . . S o I g o t a l i t t l e w o r r i e d when I f o u n d o u t t h a t — o h no, h e ' s going t o t e l l the r e s t of the people I w o r k w i t h , and t h e y ' d go, "oh r e a l l y . " So, I d o n ' t know. So f a r s o g o o d . P e o p l e t h a t I k n o w — w h e n t h e c u s t o m e r comes i n and I know t h e m , I g e t n e r v o u s t h a t t h e s t a f f w i l l f i n d o u t . . . G u y s t h a t I know f r o m [ t h e c l u b h o u s e ] come i n a n d t h e y k e e p me r u n n i n g , b u t I d o n ' t t h i n k t h e y ' l l s a y , "oh he's s c h i z o " .  105 As d e s c r i b e d , b e i n g i l l  and b e i n g diagnosed  with  s c h i z o p h r e n i a a f f e c t e d t h e day t o day work e x p e r i e n c e s . Frequently, being i l l  and b e i n g " l a b e l l e d " r e s u l t e d  i n the  person h a v i n g t o t a k e a break d u r i n g t h e workday, h a v i n g t o quit or being f i r e d .  Some p a r t i c i p a n t s e x p l a i n e d t h a t  because o f t h e problems r e l a t e d t o being i l l , take a break  from work i n t h e m i d d l e  they had t o  o f t h e workday.  One t i m e I h a d t o a s k t h e f i r s t a i d a t t e n d a n t t o l e t me go i n o n e o f t h e rooms a n d h a v e a r e s t f o r a n h o u r o r s o , b e c a u s e I was s o s t r e s s e d o n t h e j o b a n d I c o u l d n ' t keep up. M o s t i n d i v i d u a l s h a d q u i t a number o f j o b s b e c a u s e o f c h a n g e s i n t h i n k i n g , p e r c e i v i n g and r e l a t i n g ,  and changes i n  tolerance f o r stress. W i t h some o f t h e s e e p i s o d e s I ' v e h a d , w h e r e I t o o k o f f , w h e r e I t h o u g h t p e o p l e w e r e t r y i n g t o m u r d e r me, I ' d j u s t q u i t i n t h e middle o f t h e day and r u n o f f i n t o t h e city. E v e r y t i m e I g o t a j o b , I ' d g e t p a r a n o i d t h a t p e o p l e were t a l k i n g b e h i n d my b a c k , s a y i n g n a s t y t h i n g s a b o u t me a n d stuff. And t h e n I ' d g e t w o r r i e d about whether I c o u l d do t h e j o b r i g h t , a n d t h e n I ' d q u i t . So I d i d t h a t o n about 3 o r 4 j o b s . A l o t o f p e o p l e work f o r 3 o r 4 days a t a t i m e and t h e n c o u l d n ' t t a k e anymore. Y o u ' r e e n t h u s i a s t i c b e f o r e y o u s t a r t i t a n d y o u make i t t h r o u g h 3 o r 4 d a y s t h e n t h e s t r e s s gets t o you. One p a r t i c i p a n t e x p l a i n e d how t h e s t r e s s o f h i d i n g t h e i l l n e s s s and p r e t e n d i n g t o be " n o r m a l "  affected her a b i l i t y  to maintain ajob. I want t o a p p e a r n o r m a l t o e v e r y b o d y a n d t o be p l e a s a n t and t o c o n c e n t r a t e w h i l e a l l t h i s , a l l t h e s e p r o b l e m s , were g o i n g on i n s i d e . So t h e r e was t h e s t r e s s o f t h i n k i n g t h i n g s and f e e l i n g t h i n g s and t r y i n g t o keep a n o r m a l f a c a d e t o e v e r y b o d y s o t h a t somebody d o e s n ' t come  106 up t o me a n d s a y , " w h a t s g o i n g on? Maybe y o u s h o u l d n ' t be w o r k i n g . " I w a n t e d t o g e t o v e r my p r o b l e m s , b u t t h e y c a u g h t up w i t h me a n d t h e n a t some p o i n t I t h o u g h t o f r u n n i n g o u t o f t h e r e , b u t I ' d u s u a l l y w a i t u n t i l t h e end of t h e day. And t h e n t h e n e x t d a y I ' d p h o n e i n a n d s a y , " s o r r y , I c a n ' t make i t i n t o w o r k a n y m o r e . " Some p a r t i c i p a n t s d e s c r i b e d how the  t h e c h a n g e s b r o u g h t a b o u t by  i l l n e s s s resulted i n t h e i r being  fired.  I s t a r t e d g e t t i n g p a r a n o i d o f t h e b o s s and s t u f f maybe s u l k i n g w i t h t h e c u s t o m e r s s o I g o t f i r e d .  and  I w o r k e d a s a d i s h w a s h e r b u t I was a c t i n g s o s t r a n g e m a k i n g o b s c e n e g e s t u r e s a n d s t u f f s o t h e y f i r e d me. W h i l e no one w a n t e d t o t e l l their  illness,  Two  individuals decided to  t h e i r e m p l o y e r s and a n o t h e r had a breakdown  resulting  about  s e v e r a l employers eventualy learned t h a t the  i n d i v i d u a l had s c h i z o p h r e n i a . tell  a p r o s p e c t i v e employer  and  a t work  i n t h e employer's awareness o f t h e i l l n e s s .  Two  other subjects decided t o confide i n co-workers. P a r t i c i p a n t s r e c i e v e d v a r i o u s responses from employers co-workers.  Some p a r t i c i p a n t s e x p l a i n e d t h a t t h e i r  and  employer  r e s p o n d e d i n a s u p p o r t i v e manner. I d i d t e l l [my e m p l o y e r ] t h a t I was s c h i z o p h r e n i c a n d he was v e r y h e l p f u l . T h a t was a t [ t h e e m p l o y e r ' s ] c o n s t r u c t i o n [company]. B u t he o n l y knew v e r y l a t e r on. P r o b a b l y s i x o r s e v e n months a f t e r I worked f o r him. B u t me a n d [ t h e e m p l o y e r ] a c t u a l l y became q u i t e g o o d friends. He was my b o s s b u t he became a g o o d f r i e n d . L i k e s h e ' s a good j u d g e o f c h a r a c t e r . She's a good manager. She knows how I w o r k a n d s t u f f . So I f e e l g o o d i n a way a b o u t t h a t b e c a u s e , e v e n t h o u g h I'm s c h i z o p h r e n i c , s h e s t i l l w i l l g i v e me more r e s p o n s i b i l i t y w h i c h i s what I need i n a j o b t o o . B e c a u s e I'm h i g h l y e d u c a t e d — b u t y o u d o n ' t g e t p e o p l e l i k e t h a t e v e r y day. I t o l d my s u p e r v i s o r i n t h e m a i l room t h a t I h a d e m o t i o n a l p r o b l e m s . T h i s made h i m more u n d e r s t a n d i n g  107 t o w a r d s me. B u t a f t e r a w h i l e I was s t i l l p a r a n o i d a b o u t e v e r y b o d y i n t h e o f f i c e a n d I was a l w a y s l a t e f o r work q u i t e o f t e n . I t was a t e m p o r a r y j o b , b u t t h e y w e r e s t i l l g o i n g t o t r y — m y s u p e r v i s o r was s t i l l g o i n g t o t r y a n d g e t me o n f u l l , o n r e g u l a r . . . Other p a r t i c i p a n t s described s i t u a t i o n s i n which  employers  a n d c o - w o r k e r s seemed t o b e a m b i v a l e n t o r u n c e r t a i n a b o u t they  how  felt. T h e r e i s someone a t w o r k , t h a t I w o r k w i t h m o s t o f t h e t i m e , a n d h e g o e s , "Don't t a l k a b o u t i t i n f r o n t o f t h e c u s t o m e r s i f y o u c a n a v o i d i t . " He d o e s n ' t m i n d i f i t ' s maybe o n e c u s t o m e r a n d I'm t a l k i n g a b o u t i t i n a l i g h t s o r t o f way b u t , h e s a i d , " I t c o u l d s c a r e some c u s t o m e r s o f f because y o u s a y t h a t word and p e o p l e t h i n k — y o u might a s w e l l s a y you've g o t dynamite i n y o u r hand o r something."  One p a r t i c i p a n t i n d i c a t e d t h a t ,  initially,  t h e employer  u p s e t when h e l e a r n e d a b o u t t h e i n d i v i d u a l ' s  was  illness.  He g o e s , "What t h e h e l l i s g o i n g o n h e r e ? How come I d i d n ' t know?" He s a y s , " I mean y o u c a n s o r t o f c h e c k out anytime." I s a y s , " I t was my own f a u l t f o r n o t t a k i n g my meds." He f e l t a l i t t l e f u n n y . I g a v e h i m a p a m p h l e t o n w h a t i t was a b o u t . Whether he u n d e r s t o o d i t — t w o and a h a l f y e a r s a n d d o i n g my j o b a n d I g u e s s he s a i d , " W e l l h e ' s d o i n g f i n e s o f a r , i f t h e s t u p i d i d i o t t a k e s h i s meds." L a t e r t h i s e m p l o y e r d i d n o t show much c o n c e r n a b o u t t h e f a c t t h a t t h e employee had s c h i z o p h r e n i a . I gave him t h e pamphlet. He n e v e r a s k e d — n e v e r mentioned i t s i n c e . We n e v e r r a i s e t h e s u b j e c t . I t ' s a l m o s t l i k e i t n e v e r h a p p e n e d . We h a d a c o u p l e o f t a l k s a b o u t w h a t i t i s n ' t — r e a l l y I'm n o t g o i n g t o f a l l down f r o t h i n g on t h e c o n v e n t i o n f l o o r o r s o m e t h i n g , b u t — I d o n ' t know, we n e v e r s a t down a n d d i s c u s s e d i t . The o f f i c e t e n d s t o be v e r y i m p e r s o n a l . T h e r e ' s s o r t o f — y o u leave your s t u f f a t t h e door. A n o t h e r p a r t i c i p a n t f o u n d t h a t when s h e i n f o r m e d e m p l o y e r s , t h e y were  unconcerned.  108 I ' v e f o u n d a s I go t h r o u g h t h e y e a r s — a s l o n g a s y o u do y o u r j o b — y o u d o n ' t do a n y t h i n g t h a t ' s t o o o b v i o u s l y d i f f e r e n t t h a n anybody e l s e , most p e o p l e a r e happy w i t h you. Even i f you t e l l d i f f e r e n t p e o p l e about your i l l n e s s , i f y o u ' r e a c t i n g i n a way t h a t ' s a c c e p t a b l e t o them, t h e y d o n ' t — t h e y l e a v e y o u — a n y w a y s , t h e y t h i n k you're f i n e . One p a r t i c i p a n t e x p l a i n e d t h a t s h e t h o u g h t a n e m p l o y e r h a d been u n s u p p o r t i v e .  She s a i d t h a t s h e h a d b e e n l a i d o f f  s h o r t l y a f t e r she had c o n f i d e d about h e r i l l n e s s . previous  i n a co-worker and t o l d him  She s t a t e d , " I h a d a j o b  t o t h a t w h e r e I t o l d them, a n d I'm p r e t t y  t h a t ' s when I g o t l a i d o f f .  I t s hard  sure  t o know w h a t t o d o . "  I n a l l b u t t h i s l a s t s i t u a t i o n , when p a r t i c i p a n t s i n f o r m e d employers about t h e i r I t should  illness,  t h e i r j o b s were  maintained.  be n o t e d t h a t i n a l l b u t t h e l a s t s i t u a t i o n , i n  w h i c h t h e i n d i v i d u a l had o n l y worked f o r a few weeks, p a r t i c i p a n t s h a d worked f o r t h e e m p l o y e r f o r s e v e r a l months and,  i n some c a s e s ,  several years.  I t should  a l s o be p o i n t e d  o u t t h a t o n e p a r t i c i p a n t q u i t h i s j o b a n d was r e h i r e d by  later  a n e m p l o y e r who knew a b o u t t h e i n d i v i d u a l ' s i l l n e s s .  W h i l e p a r t i c i p a n t s were c o n c e r n e d about i n f o r m i n g those  employers,  who d i d s o a f t e r w o r k i n g f o r s e v e r a l m o n t h s , t e n d e d t o  be met w i t h s u p p o r t i v e , o r a t l e a s t n o t d e t r i m e n t a l responses. P a r t i c i p a n t s h a d v a r i o u s ways o f r e s p o n d i n g and  employers f o l l o w i n g t h e d i s c l o s u r e .  t o coworkers  One p a r t i c i p a n t  avoided  t h e u s e o f t h e word " s c h i z o p h r e n i a " and f o c u s e d  medical  explanation of h i s i l l n e s s .  on a  109 I t e l l p e o p l e I t a k e an a n t i p s y c h o t i c drug. And as soon as y o u u s e t h e word " p s y c h i a t r y " t h e y k i n d o f g e t a l i t t l e funny. And I s a y t h e r e a s o n f o r t h a t i s b a s i c a l l y my b r a i n p r o d u c e s t o o much d o p a m i n e , a n d i t j u s t compensates, b l o c k s i t out. A n d t h e y seem t o b e q u i t e happy w i t h t h a t . I t h i n k i f you u s e t h e word s c h i z o p h r e n i a , they tend t o r e a l l y g e t funny because t h e y ' v e h e a r d t h e w o r d , b u t t h e y h a v e r e a l l y no i d e a w h a t i t means o r w h a t i t s a b o u t . So I j u s t t e l l t h e m b a s i c a l l y a b o u t my b r a i n p r o d u c e s t o o much o f o n e t y p e of c h e m i c a l and t h a t s i t . And I t a k e t h e s e p i l l s t o c o m b a t i t a n d t h e y ' r e much h a p p i e r w i t h t h a t e x p l a n a t i o n t h a n t o t e l l them y o u ' r e s c h i z o p h r n e i c . A n o t h e r p a r t i c i p a n t u s e d humor a s a way o f d e a l i n g w i t h t h e situation. He k n o w s — I g u e s s I t o l d h i m [my c o - w o r k e r ] b e f o r e I t o l d h i s f a t h e r [ t h e employer]... I guess j u s t making a j o k e o u t o f i t a n d s a y i n g , " b u t I'm n o t c r a z y . " And I s a i d , "so don't t e l l y o u r d a d . " And he j u s t l a u g h e d , and t h e y d o n ' t make a b i g t h i n g o f i t , s o I d o n ' t k e e p b r i n g i n g i t up. W h i l e i t may a p p e a r t h a t t h e p a r t i c i p a n t ' s w o r k experiences  were u n p l e a s a n t ,  w o r k t h a t was  p a r t i c i p a n t s d i d sometimes  find  satisfying.  The o n l y s u c e s s f u l j o b I h a d d u r i n g t h a t p e r i o d was a t t h e [summer e v e n t ] a s a s e c u r i t y g u a r d . . . W h i c h I d i d t h a t f o r a b o u t t e n summers a n d — a h , j u s t s t a n d i n g t h e r e I d i d n ' t have t o worry about m u c h — j u s t s t a n d i n g t h e r e . E x c e p t I was s t i l l w o r r i e d a b o u t w h a t p e o p l e t h o u g h t o f me—paranoid s t i l l . B u t , my f e e t — I g o t t i r e d . I d i d n ' t h a v e t o — n o o n e c o u l d t e l l t o o much a b o u t me, s o I s u r v i v e d f o r a s e c u r i t y guard. One j o b t h a t w o r k e d o u t v e r y w e l l f o r me, was a j o b w h e r e I was my own b o s s a n d I was d o i n g a n i n v e n t o r y f o r some a r t w o r k . . . S o t h a t j o b was t h e b e s t b e c a u s e I was my own b o s s . Of  t h o s e p a r t i c i p a n t s who w e r e c u r r e n t l y w o r k i n g ,  several  s a i d that they enjoyed t h e i r j o b . I l i k e t h e p a r t - t i m e w o r k I'm d o i n g now b e c a u s e i t ' s i n t h e m e n t a l h e a l t h f i e l d where I want t o w o r k . . . I t ' s very rewarding.  110 L i k e I'm i n a n o f f i c e a l l t h e t i m e now. T h a t ' s o k . A n d I l i k e my w o r k . I l i k e my j o b . I t ' s i n t e r e s t i n g , b u t t h e r e ' s a l o t o f o t h e r t h i n g s I'm i n t e r e s t e d i n . So maybe t h e r e ' s a f e w y e a r s i n t h e r e — t h e n l o o k a r o u n d o r something. The f o l l o w i n g s u m m a r i z e s t h e p a r t i c i p a n t ' s d a y t o d a y work e x p e r i e n c e s . experience.  Being  ill  a f f e c t e d t h e day t o day work  That i s , each person's  work e x p e r i e n c e  was  a f f e c t e d by t h e n a t u r e o f t h e changes i n t h i n k i n g , p e r c e i v i n g and  relating,  activity.  s t r e s s t o l e r a n c e , and energy and psychomotor  Each person's  response  t o being diagnosed  s c h i z o p h r e n i a a f f e c t e d t h e i r work e x p e r i e n c e . participants,  o r were f i r e d  informed  Many p a r t i c i p a n t s h a d t o  from t h e i r j o b s .  When e m p l o y e r s w e r e  of the individual's illness,  o t h e r s w e r e somewhat a m b i v a l e n t All  but t h i s  Some  i n t r y i n g t o hide t h e i r d i a g n o s i s , had t o d e a l  w i t h a d d i t i o n a l s t r e s s and worry. quit,  with  latter  some w e r e s u p p o r t i v e ,  a n d one seemed  unsupportive.  employer had been a p p r i s e d o f t h e  s i t u a t i o n s e v e r a l months o r y e a r s a f t e r h i r i n g t h e i n d i v i d u a l and  h a d c o n t i n u e d t h e i n d i v i d u a l ' s employment.  Following  d i s c l o s u r e o f t h e i r d i a g n o s i s , many p a r t i c i p a n t s c o n t i n u e d t o a v o i d t h e u s e o f t h e w o r d " s c h i z o p h r e n i a . " One p a r t i c i p a n t u s e d m e d i c a l t e r m s when d i s c u s s i n g h i s i l l n e s s . humor when d i s c u s s i n g h i s i l l n e s s . i n t h e p a s t , found  One u s e d  S e v e r a l p a r t i c i p a n t s had,  a j o b o r t w o t h a t was s a t i s f a c t o r y .  those  c u r r e n t l y working,  their  work.  s e v e r a l stated that they  Of  enjoyed  Ill Working Year t o Year I t i s e v i d e n t from t h e p r e v i o u s d i s c u s s i o n t h a t most p a r t i c i p a n t s c h a n g e d j o b s many t i m e s .  They e x p e r i e n c e d  one p a r t i c i p a n t r e f e r r e d t o a s a " r o c k y r o a d " employment.  what  i n terms of  This rocky road included periods of  u n e m p l o y m e n t , w h i c h f o r some w e r e q u i t e l e n g t h y .  One  p a r t i c i p a n t , who h a d n ' t w o r k e d f o r f i v e y e a r s , s t a t e d , "now I c a n ' t t a k e work a t a l l , n o t a t a l l . " though c u r r e n t l y working,  Another  h a d gone t h r o u g h  u n e m p l o y m e n t when h e was y o u n g e r .  participant,  many p e r i o d s o f  He s t a t e d , " I g u e s s y o u  c o u l d s a y t h e symptoms w e r e s o s e v e r e t h a t I c o u l d n ' t k e e p working  at a l l . "  D u r i n g p e r i o d s o f unemployment,  p a r t i c i p a n t s were i n h o s p i t a l . wasn't working  some  One i n d i v i d u a l s a i d , " I  b e c a u s e I was i n a n d o u t o f t h e h o s p i t a l  few m o n t h s o r s o . " A t t i m e s , p a r t i c i p a n t s w e r e w e l l to  l i v e a t home, b u t w e r e n o t w e l l e n o u g h t o w o r k .  p a r t i c i p a n t ' s comment e x m p l i f i e s t h e s t a t e m e n t s  every  enough One  of several  others. I've been c o p i n g w i t h t h e day t o day c o p i n g . Things l i k e p a r k i n g and t r a f f i c and c o o k i n g f o r y o u r s e l f and a l l t h e l i t t l e d a y t o d a y t h i n g s seem t o b e e n o u g h , a n d w o r k i n g seems t o j u s t p u t me o v e r b o a r d . D u r i n g p e r i o d s when t h e y c o u l d w o r k , m o s t had said  gone t h r o u g h  many j o b s .  participants  Some h a d s o many j o b s t h a t  they  i t was " h a r d t o k e e p t r a c k . " Immediately a f t e r I g o t diagnosed I had a l o t o f j o b s , u n t i l I g o t i n w i t h [ t h e community s e r v i c e ] . But I've done a l o t o f d i f f e r e n t j o b s .  112 T h e r e w e r e s o many i t ' s h a r d t o k e e p t r a c k . Because I c a n ' t s a y t h a t I h a d o n l y one j o b e v e r y summer. T h e r e were s e v e r a l t h a t o n l y l a s t e d a s h o r t p e r i o d o f time. I've changed j o b s so o f t e n t h a t I always l i k e l o o k i n g for a job. S o r t o f l i k e g o i n g t o manpower i s a smorgasboard o r something. Considering  t h a t many o f t h e p a r t i c i p a n t s w e r e i n t h e i r  t h i r t i e s and f o r t i e s ,  i t i s n o t s u r p r i s i n g t h a t they had  w o r k e d a t many j o b s .  However, even t h e y o u n g e r p a r t i c i p a n t s  had  h e l d many j o b s .  The y o u n g e s t p a r t i c i p a n t h a d h e l d s i x  j o b s s i n c e becoming i l l .  The i n d i v i d u a l who h a d b e e n i l l f o r  o n l y two y e a r s had h e l d t h r e e Another notable not  jobs during t h a t time period.  p o i n t i s t h a t p a r t i c i p a n t s ' j o b changes were  c a r e e r moves.  That i s , t h e y were n o t o f t e n j o b changes  w i t h i n t h e same o r r e l a t e d f i e l d o f w o r k .  Participants held  numerous u n r e l a t e d t y p e s o f j o b s . The e a r l i e r o n e s t h a t I a p p l i e d f o r , b e c a u s e I d i d n ' t h a v e much e x p e r e i n c e , w e r e m o s t l y s a l e s p e r s o n , c a s h i e r j o b s . . . S o I ' v e had a g r a b bag o f e x p e r i e n c e h e r e and there. I t t o o k a w h i l e t o f i n d what I n e e d e d — g a r d e n i n g wasn't it. I ' d been d o i n g t h a t and banquet s e t u p s , by y o u r s e l f . . . I ' d been d o i n g t h a t — s o I ' d worked a t a gas s t a t i o n , d e l i v e r e d p i z z a , b u t t h e r e ' d been o t h e r j o b s t h a t I ' d had. I had a paper r o u t e , bus boy, cooking a t [a r e s t a u r a n t ] and t h e n c o o k i n g a t [ a n o t h e r r e s t a u r a n t ] , t h e n a t s h i p p i n g a n d r e c i e v i n g a n d now a t [ a s t o r e ] . So t h a t ' s about s i x jobs a f t e r I g o t s i c k . As  discussed  quit jobs.  before,  many o f t h e p a r t i c i p a n t s h a d r e p e a t e d l y  Some n o t i c e d t h a t e v e n t u a l l y t h e number o f  a v a i l a b l e jobs diminished quitting.  due t o b e i n g  fired  from a j o b o r  E a c h t i m e a p a r t i c i p a n t l e f t a j o b , i t meant  113 a n o t h e r d o o r was  closed.  A s one p a r t i c i p a n t e x p l a i n e d , t h e  i n d i v i d u a l w o u l d n o t l i k e l y be o f f e r e d a j o b t h e r e a g a i n . A l s o y o u r l i s t o f g o i n g b a c k t o t h e s e p l a c e s becomes s h o r t e r and s h o r t e r b e c a u s e y o u ' r e a b a d e m p l o y e e . And a l l o f a sudden you c a n ' t a p p l y f o r a p o s t o f f i c e j o b and y o u c a n ' t a p p l y a t t h a t c h a i n s t o r e , a n d y o u c a n ' t a p p l y t h e r e b e c a u s e y o u s c r e w e d up. While going through t h i s p a t t e r n of s t a r t i n g  and  s t o p p i n g many j o b s i n d i v i d u a l s d i s c o v e r e d w h i c h t y p e s o f j o b s a n d w o r k c o n d i t i o n s s h o u l d be a v o i d e d .  I n some c a s e s  the  p e r s o n r e a l i z e d t h a t c e r t a i n j o b o r c a r e e r g o a l s would have t o be  changed. I t ' s a b i t d e p r e s s i n g because o f a l l t h e dreams I had as a child. I know I'm g o i n g t o be d i f f e r e n t n o w — t h a t I'm g o i n g t o h a v e t o a c c e p t t h a t e v e n i f I do g e t a j o b t h a t i t may n o t be t h a t e x c i t i n g o r h a v e a d v a n c e s i n i t t o r i s e up t h e l a d d e r , b e c a u s e t h e s t r e s s w o u l d be t o o great. So I ' v e h a d t o h u m b l e m y s e l f t o a n e x t e n t and t h i n k w e l l maybe I w i l l h a v e t o be p o o r e r t h a n I t h o u g h t o r h a v e a more s i m p l e c a r e e r t h a n I t h o u g h t . U n f o r t u n a t l y my p r o b l e m s h a v e b e e n a r o l l e r c o a s t e r . T h e y come and go. And t h e y come b a c k o f t e n e n o u g h t o t h i n k t h a t maybe I w o n ' t g e t t o do a l l t h e t h i n g s on my own t e r m s . I w o n ' t be a b l e t o do a l l t h e a m b i t i o n s t h a t I t h o u g h t b e c a u s e I was a l w a y s s m a r t s o I h a d many ambitions. I f e e l some r e g r e t t h a t I c a n ' t do w h a t I m i g h t h a v e b e e n a b l e t o do when I g o t s i c k . Like I probably could h a v e h a d a 30 o r 40 t h o u s a n d d o l l a r a y e a r j o b . I f I w a s n ' t s i c k , I c o u l d h a n d l e a l o t more s t r e s s t h a n I can.  One  p a r t i c i p a n t f e l t h e r a m b i t i o n s had  t i m e t h a t s h e h a d become  increased since the  ill.  I t h i n k I do h a v e t h a t g o a l now. I n t h e p a s t my a r t was t h e m o s t i m p o r t a n t t h i n g and I d i d j o b s t o p a y t h e bills. I w a s n ' t m o t i v a t e d t o h a v e a c a r e e r . L i k e now I w o u l d n ' t be c o n t e n t w i t h t h a t . So I t h i n k I'm a c t u a l l y more a m b i t i o u s .  114 A n o t h e r p a r t i c i p a n t s a i d t h a t o n l y a t c e r t a i n t i m e s was t h e r e a sense o f having t o lower  ambitions.  When I was g e t t i n g d e p r e s s e d I t h i n k I f e l t t h a t way about a m b i t i o n s — l i k e s c h o o l , u n i v e r s i t y . So when I f e e l depressed, I t h i n k I've had t o lower ambitions, but o t h e r t i m e s I j u s t p u t i t o u t o f my m i n d r e a l l y . In  summary, many p a r t i c i p a n t s e x p e r i e n c e d  unemployment.  periods of  When a b l e t o w o r k , p a r t i c i p a n t s moved  numerous, u n r e l a t e d j o b s .  through  Most p a r t i c i p a n t s i n d i c a t e d  t h e i r j o b options decreased  as they f e l t unable  that  t o return to  jobs they had q u i t ,  and as t h e y  s h o u l d be a v o i d e d .  Some p a r t i c i p a n t s f e l t d i s a p p o i n t e d t h a t  they had t o decrease  l e a r n e d w h i c h work c o n d i t i o n s  their jobgoals.  that they could s t i l l R e s p o n d i n g t o t h e Work  felt  encouraged  a c h i e v e t h e i r g o a l s and a m b i t i o n s . Experience  P a r t i c i p a n t s described emotional experiences  Others  just discussed.  Some o f t h e w o r k  resulted i nthe participants feeling d i s a p p o i n t e d and e m o t i o n a l l y  responses  t o t h e work experiences  discouraged,  devastated.  W e l l i t was d e v a s t a t i n g f o r me b e c a u s e I a l w a y s u s e d t o w i n a w a r d s f o r g o o d c o n d u c t a n d s t u f f when I was a y o u n g e r k i d , a n d I was g e t t i n g g o o d g r a d e s . And t h e n t o q u i t a j o b was r e a l l y d e v a s t a t i n g . The symptoms w e r e s o severe t h a t I c o u l d n ' t hack i t out. So I m u s t h a v e q u i t twenty d i f f e r e n t jobs o r s o , and g o t f i r e d about f i v e times too. That's even worse. W e l l t h a t ' s d e v a s t a t i n g too. So i t was a g r e a t d i s a p p o i n t m e n t a f t e r I g r a d u a t e d . Instead o f working again—when I s t a r t e d having p r o b l e m s — w h e n I was g e t t i n g d r e s s e d t o go t o w o r k a n d I s t a r t e d c r y i n g o r f e e l i n g blank o r robot l i k e . I was d r i v i n g t o work and I went j u s t c o m p l e t l y b l a n k . And t h e f i r s t t h i n g I t h o u g h t was "oh n o , o h n o . I t ' s coming back a g a i n . Oh f o r h e a v e n s s a k e s . "  115 But t h e r e i s a l o t of d e p r e s s i o n because of disappointments. And t h e r e a s o n I w e n t b a c k t o u n i v e r s i t y was t o make a l i f e f o r m y s e l f . So I'm not s a y i n g i t was a w a s t e , b u t i t seems l i k e a w a s t e so f a r . I h a d t o q u i t t h a t j o b and I h a v e n ' t w o r k e d s i n c e . It h a s t o do w i t h f e a r o f i t b e c a u s e a s I ' v e s a i d , I ' v e had t o q u i t s o many t i m e s , w h e t h e r i t ' s a few h o u r s o r a few m o n t h s t h a t I g e t d i s c o u r a g e d and t h i n k I ' 1 1 n e v e r be a b l e t o work. Some p a r t i c i p a n t s a l s o embarrassment about not was  f e l t a c e r t a i n amount  b e i n g a b l e t o work.  p a r t i c u l a r l y a c u t e when f r i e n d s  about work.  One  participant's  of  Embarrassment  or acquaintances  asked  statement i l l u s t r a t e s  other p a r t i c i p a n t s described the  how  situation.  T h e r e was t h a t f e e l i n g o f e m b a r r a s s m e n t . I couldn't keep u p — a n d e x p l a i n i n g t o p e o p l e — t h i s happened recently. E x p l a i n i n g t o people I haven't seen f o r years what y o u ' r e d o i n g . Y o u ' r e t h i n k i n g , oh I'm d o i n g nothing. B u t I j u s t s a y , "I'm i l l u s t r a t i n g " , s o i t k e e p s t h e m q u i e t and I d o n ' t h a v e t o go i n t o f u r t h e r discussion. Because I c a n ' t say, " w e l l a c t u a l l y I h a v e n ' t w o r k e d f o r two y e a r s . I j u s t w a t c h TV and quilt." Because t h e y would l o o k a t you v e r y s t r a n g e l y and s a y , "oh s o r r y I a s k e d . " In addition,  some p a r t i c i p a n t s  indicated  that  i t  was  e m b a r r a s s i n g t o meet f o r m e r c o - w o r k e r s , e s p e c i a l l y i f e m p l o y m e n t had  ended  the  badly.  So y o u s t a r t a v o i d i n g t h o s e p l a c e s and h o p i n g y o u d o n ' t s e e a n y b o d y y o u knew a t w o r k . So t h e r e ' s a l l t h e s e l i t t l e t h i n g s r e l a t e d t o i t . You p u t y o u r s e l f i n h i d i n g e v e r y t i m e you have a f a i l u r e . I c a n ' t e v e n a s s o c i a t e w i t h t h e m now. I f I s e e t h e m on t h e s t r e e t , a s s o o n a s t h e y t a l k t o me, I f e e l awkward. I d o n ' t w a n t t o t a l k t o t h e s e p e o p l e . T h e y d i s t u r b me and t h e y b r i n g i t a l l b a c k . Another emotional response that was  guilt.  Some p a r t i c i p a n t s  some p a r t i c i p a n t s  experienced  f e l t g u i l t y about not  working.  116 T h e r e ' s q u i t e a b i t o f g u i l t comes when y o u t h i n k , gee i f o n l y I t r i e d a l i t t l e b i t h a r d e r a n d I c a n do i t — a n d I j u s t i g n o r e d t h e symptoms a n d I c o u l d manage. I f e l t t h a t my c o n s c i e n c e was s a y i n g y o u s h o u l d be working. You c a n ' t s i t a t home a l l d a y a n d w a t c h TV. What w i l l y o u r f r i e n d s t h i n k . What w i l l y o u r r e s u m e l o o k l i k e i f y o u ' r e t h i r t y y e a r s o l d and y o u d o n ' t h a v e any w o r k e x p e r i e n c e . Leaving  j o b s and  decreasing l i f e  goals a f f e c t e d the  e s t e e m o f many o f t h e i n d i v i d u a l s .  One  self-  i n d i v i d u a l ' s comment  e x e m p l i f i e s t h e t y p e o f comments t h a t many p a r t i c i p a n t s made. There i s a g r e a t f e a r o f s t a r t i n g s o m e t h i n g , w i t h good i n t e n t i o n s , and f i n d i n g o n c e a g a i n , f o r t h e t e n t h t i m e o r how many t i m e s h a v e I b e e n — e l e v e n , t w e l v e , t h i r t e e n . Where w i l l i t end? W i l l I s p e n d my w h o l e l i f e j u m p i n g around l i k e t h i s ? E a c h t i m e y o u r s e l f - e s t e e m g o e s down t h e d r a i n and — o h w e l l I ' l l be on w e l f a r e t h e r e s t o f my l i f e o r s o m e t h i n g b e c a u s e I j u s t c a n ' t c o p e . Either t h a t o r w a s h i n g v e g e t a b l e s o r s o m e t h i n g minimum wage. As  a l l t h e p a r t i c i p a n t s were i n t h e i r t w e n t i e s o r o l d e r ,  h a v i n g t o w o r k minimum wage j o b s was demoralizing. who  had  considered  S e v e r a l p a r t i c i p a n t s t a l k e d about  r e c e n t l y been w o r k i n g  particularly individuals  a t minimum wage j o b s .  One o f t h e f e l l o w s , he k e e p s t a l k i n g a b o u t g o i n g t o c o l l e g e a n d g o i n g t o s c h o o l , b e c a u s e he d o e s n ' t w a n t t o s t a r t o f f making f o u r d o l l a r s washing d i s h e s a t [a f a s t f o o d r e s t a u r a n t ] . I mean, h e ' s a l m o s t t h i r t y , and h e ' s g o i n g t o be p u t i n w i t h t h e s e s i x t e e n y e a r o l d s . I mean, g r a n t e d h e ' s t e n o r f i f t e e n y e a r s b e h i n d , b u t t h e ego—demoralizing trip. You s e e by b e i n g on w e l f a r e and h a v i n g h i s own l i t t l e w o r l d , he d o e s n ' t h a v e t o d e a l with that stress. B u t i f he was s t u c k i n a k i t c h e n w a s h i n g d i s h e s w i t h a bunch o f t e e n a g e r s and i f t h e y e v e r h e a r d he h a d s c h i z o p h r e n i a , he w o u l d be t h e t a r g e t for every joke i n the place. I d o n ' t know w h a t i t ' s l i k e t o n o t h a v e a j o b , b u t I know my f r i e n d , t h a t d i d n ' t w a n t t o do t h i s , he s a y s , " i f t h e r e i s a k i n d c a r i n g God, why w o u l d he g i v e me a l l t h e s e f e e l i n g s and why w o u l d I n o t h a v e a j o b t h a t I  117  w o u l d h a v e some s e l f - w o r t h ? " Because he had worked e i g h t months a s a bus boy and he's i n h i s t w e n t i e s , and he f e l t d e g r a d e d a t t h e e n d . As  i m p l i e d i n t h e above s t a t e m e n t , t h e p a r t i c i p a n t t h o u g h t i t  was b e t t e r t o g o o n w e l f a r e  t h a n t o a c c e p t a j o b t h a t was  h u m i l i a t i n g and d e m o r a l i z i n g . echoed t h i s thought.  Several  other  participants  T h e y s u g g e s t e d t h a t i n some c a s e s i t  w o u l d be b e t t e r t o s t a y on w e l f a r e  or a pension rather  h a v e t o f a c e t h e h u m i l i a t i o n o f minimum wage j o b s .  than  As  a n o t h e r p a r t i c i p a n t o b s e r v e d , " h i s e a s y way o u t i s s t a y i n g o n welfare,  because he doesn't have t o c o n f r o n t  the real  world."  I n summary, many p a r t i c i p a n t s e x p e r i e n c e d d i s a p p o i n t m e n t , discouragement, embarrassment, and g u i l t i n r e l a t i o n t o t h e work e x p e r i e n c e s . self-esteem employment.  Some f o u n d t h a t  their  was a f f e c t e d b e c a u s e o f i n a b i l i t y t o m a i n t a i n Several  suggested that self-esteem  was a l s o  a f f e c t e d when a n i n d i v i d u a l h a d t o w o r k a t a j o b c o n s i d e r e d degrading.  Some p a r t i c i p a n t s e x p l a i n e d  b e t t e r t o l i v e on w e l f a r e  t h a t i t w o u l d be  t h a n t o a c c e p t such work.  F i n d i n g M e a n i n g i n Work Despite  the d i f f i c u l t i e s  and t h e e m o t i o n a l  r e l a t e d t o f i n d i n g and m a i n t a i n i n g  responses  work, p a r t i c i p a n t s  i n d i c a t e d t h a t w o r k h e l d a l o t o f m e a n i n g f o r them. A l l p a r t i c i p a n t s had a strong  d e s i r e t o work.  One p e r s o n s a i d  t h a t even i f she d i d n ' t have t o work, she would  continue  working. I t h i n k i f I won t h e l o t t e r y I ' d s t i l l b e w o r k i n g . I t ' s n o t a money t h i n g . . . N o w t h a t I h a v e s o c i a l s k i l l s , I  118 w a n t t o be w i t h p e o p l e . I want t o work w i t h p e o p l e . i t ' s r e w a r d i n g n o t j u s t on a w o r k l e v e l , b u t on an emotional or s p i r i t u a l l e v e l . Some p a r t i c i p a n t s f e l t t h a t b e c a u s e o f b e i n g i l l ,  t h e y had  So  a  s t r o n g e r d e s i r e t o w o r k t h a n many o t h e r p e o p l e . So y o u m i g h t be a s g o o d o r e v e n b e t t e r t h a n a l o t o f w o r k e r s on y o u r good d a y s , b e c a u s e t h e r e ' s t h a t e x t r a m o t i v a t i o n t o t r y and work. T h e r e ' s a l o t o f p e o p l e who've n e v e r b e e n s i c k b e f o r e — j u s t t a k e w o r k f o r granted. W h e r e a s , a p e r s o n who h a s b e e n i l l , i s r e a l l y w a n t i n g i t t o w o r k o u t and s o t h e y p u t i n t h a t l i t t l e extra effort. So t h a t ' s one t h i n g more I c a n s a y i s t h a t when t h e y a r e w o r k i n g , t h e y ' r e p r o b a b l y w o r k i n g very well. F o r many p a r t i c i p a n t s , w o r k p r o v i d e d a s e n s e and d i r e c t i o n him,  one  in their  lives.  participant said,  somewhere.  of  purpose  When a s k e d w h a t w o r k meant f o r  " I seems l i k e y o u ' r e  going  I t seems l i k e t h e r e ' s a s t e p b e y o n d a n d t h e r e i s  a r e a s o n coming t h e n e x t day".  Another  clearly  i l l u s t r a t e s the importance  purpose  t o her  p a r t i c i p a n t • s comment  o f work f o r p r o v i d i n g  life.  I s t i l l f e e l t h a t , y e s t h e r e i s some p u r p o s e t o my e x i s t e n c e on t h i s p l a n e t . I d o n ' t j u s t e a t , s l e e p and w a t c h TV. I am a w o r k i n g human b e i n g b e c a u s e — y o u t a k e anybody t h a t ' s unemployed, t h e h e a l t h i e s t p e r s o n i n t h e w o r l d , a n d t a k e t h e m u n e m p l o y e d f o r a w h i l e . Say t h e y won a l o t t e r y , t h e y ' r e g o i n g t o be u n h a p p y a b o u t i t . B e c a u s e y o u c a n n o t s i t and s t a r e o u t t h e w i n d o w . You h a v e t o do s o m e t h i n g . T h a t ' s w h a t b e i n g human i s a l l about. So no m a t t e r w h a t l e v e l y o u a r e , i f y o u ' r e h e a l t h y o r y o u ' r e u n h e a l t h y o r s t r u g g l i n g somewhere i n b e t w e e n , t h e w o r k , i t g i v e s some r e a s o n why y o u e x i s t — and f e e l i n g g o o d a t t h e end o f t h e d a y . Maybe y o u made a d i f f e r e n c e t o a n o l d p e r s o n , a c h i l d , maybe y o u c a n ' t - I know one d o c t o r who s a y s when y o u ' r e w e l l , y o u ' r e p a y i n g income t a x . That's t h e i r v a l u e i n s o c i e t y . T h a t ' s q u i t e humerous b u t — I ' m n o t p a y i n g income tax r i g h t now, b u t i f I know t h a t I'm v o l u n t e e r i n g , I know t h a t I'm d o i n g s o m e t h i n g .  119 Several  participants explained  t h a t w o r k was  i n terms of the f i n a n c i a l b e n e f i t s .  meaningful  F o r one p a r t i c i p a n t ,  u n e m p l o y m e n t and r e l i a n c e o f a p e n s i o n w o u l d r e s u l t i n m a j o r losses. quarters.  He  s t a t e d , " i f I w a s n ' t w o r k i n g I ' d l o s e my I ' d l o s e my  vehicle."  Other p a r t i c i p a n t s  p r e f e r r e d t o work r a t h e r t h a n r e c e i v e w e l f a r e , make a l i t t l e  living  e x t r a money by d o i n g  i f they  could  so.  See I c o u l d make $560 a m o n t h on w e l f a r e , b u t i t j u s t w o u l d n ' t be t h e same. I t f e e l s a l o t b e t t e r t o s t a n d on y o u r own two f e e t — p l u s money. L i k e I d o n ' t make a l o t o f money. I t g i v e s me money f o r e x t r a s and s t u f f . Like I h a v e a c o u p l e o f d o g s t h a t my p a r e n t s t a k e c a r e o f . So I c a n f e e d them. I d o n ' t h a v e a l o t o f money b u t I can e i t h e r save o r spend. That's always been i m p o r t a n t t o me. One  p a r t i c i p a n t i n d i c a t e d t h a t i t was  worthwhile working i f  t h e j o b p r o v i d e d income " a t o r above t h e p o v e r t y l i n e . "  He  s t a t e d t h a t on a p e n s i o n , he c o u l d n ' t p r o v i d e f o r h i s n e e d s . I'm o n a h a n d i c a p p e n s i o n a t $664 a m o n t h — h a l f t h e poverty line. And t o b a c c o k e e p s g o i n g up. And I know f o r a f a c t t h a t a b o u t 95 p e r c e n t o f m e n t a l p a t i e n t s smoke. And i t ' s e x p e n s i v e — t a k e s up a t l e a s t h a l f o u r s p e n d i n g i n c o m e . A f t e r y o u p a y r e n t , y o u g o t $365 d o l l a r s l e f t and s m o k i n g c o s t s a b o u t $200 a m o n t h . I n a d d i t i o n , p a r t i c i p a n t s ' comments i n d i c a t e d w o r k p r o v i d e d some s t r u c t u r e t o t h e  that  day.  S o m e t h i n g you base y o u r day a r o u n d — s t r u c t u r e s y o u r day a n d makes y o u f e e l l i k e y o u b e l o n g somewhere a n d g i v e s y o u an i d e n t i t y . G i v e s y o u a commitment t o d o i n g something. L i k e y o u h a v e t o show up a t a c e r t a i n p l a c e a t a c e r t a i n t i m e , s o t h a t becomes w h a t y o u a r e i n a sense. I w o u l d become [when n o t w o r k i n g ] d i r e c t i o n l e s s and s o r t of a f e e l i n g of wandering a l l over the p l a c e - ^ s o r t of d r i f t i n g a r o u n d , s o r t o f l o n e l y and d r i f t i n g around.  120 I n t h e a b o v e comment, t h e i n d i v i d u a l r e f e r s t o f e e l i n g " l o n e l y " when n o t w o r k i n g .  Several others explained that  w o r k was i m p o r t a n t i n t e r m s o f t h e s o c i a l r e l a t i o n s h i p s i t provided. I h a v e t o b e w o r k i n g . . . I f i t was w o r k i n g i n a f a c t o r y I wouldn^t l a s t . I've g o t t o have t h a t r a p p o r t w i t h people. I ' v e a l w a y s b e e n t h a t way . . . I ' v e g o t t o — n o one s h o u l d b e i s o l a t e d . Keeping i n c o n t a c t w i t h p e o p l e , and g o i n g o u t and e n j o y i n g i t , and g e t t i n g o u t o f t h e apartment, and g e t t i n g o u t o f t h e h o u s e i s v e r y i m p o r t a n t t o d o . The s o c i a l p a r t o f i t [work] i n s m a l l doses. From p a r t i c i p a n t s '  statements  i t seemed t h a t  another  p o s i t i v e a s p e c t o f t h e w o r k e x p e r i e n c e was t h a t i t p r o v i d e d an i d e n t i t y .  In particular,  h e l p e d them t o change t h e i r person  t o that of a well  some p a r t i c i p a n t s s a i d t h a t w o r k i d e n t i t y from t h a t o f a s i c k  person.  One t h i n g I f o u n d , t h a t e v e n when I'm t a k i n g c o u r s e s o r g o i n g t o a [ t h e r a p y ] p r o g r a m , t h a t I d o n ' t f i n d t h e same s a t i s f a c t i o n b e c a u s e I'm r e c e i v i n g h e l p . I'm r e c e i v i n g a d v i c e f r o m t h e d o c t o r s a n d t h e t h e r a p i s t , b u t I'm n o t g i v i n g a n y t h i n g , and I miss t h a t . I have a r e a l l y strong d e s i r e t o mix t h i s program w i t h v o l u n t e r i n g r i g h t now, b e c a u s e I f e e l l i k e I'm g e t t i n g a l l t h i s i n p u t , b u t w e l l I want t o be d o i n g s o m e t h i n g . I feel l i k e I'm b e i n g a s a s i c k p e r s o n . I'm r e c i e v i n g a l l t h e t i m e , w h e r e a s , when I'm g i v i n g , I'm a w e l l p e r s o n . I went on UIC once a n d — s o r t o f t h i s s t r a n g e frame o f mind y o u g e t i n t o where t h e governments p a y i n g you a w e l f a r e c h e c k a n d y o u c a n d e v e l o p t h i s , "somebody owes me a l i v i n g " k i n d o f a t t i t u d e . That i s r e a l l y unhealthy. To b e o n w e l f a r e , m e n t a l h a n d i c a p p e n s i o n , unemployment i s v e r y d e m o r a l i z i n g . Something v e r y p o s i t i v e a b o u t k n o w i n g y o u c a n w o r k . T h a t was f o r me a b i g s t e p i n , n o t s o much i n h e a l i n g , b u t more i n r e b u i l d i n g . I have a h a n d i c a p , y e t be a b l e t o s u p p o r t yourself, take care of yourself. That's very p o s i t i v e element.  121 I was a b l e t o g e t a h a n d i c a p p e n s i o n . I t means t h a t y o u h a v e more money i f y o u ' r e o n w e l f a r e . But according t o t h e s o c i a l s e r v i c e s and h o u s i n g , t h e y b e l i e v e you a r e u n e m p l o y a b l e a n d y o u w i l l n e v e r h o l d down a j o b . So t h a t k i n d o f message i s i n y o u r head. So y o u h a v e t o s a y I am g o i n g t o g e t o f f w e l f a r e . I am g o i n g t o h o l d down a j o b . I am g o i n g t o b r e a k away f r o m t h e s y s t e m . A n d a l s o f o r me i t ' s i m p o r t a n t f o r me t o g i v e b a c k some o f what I ' v e t a k e n from t h e system and t h a t ' s r e a l l y i m p o r t a n t t o me. I t ' s part of being a contributing member o f s o c i e t y . The  a b o v e s t a t e m e n t i n c l u d e s a n o t h e r t h o u g h t t h a t many  p a r t i c i p a n t s expressed.  Many s t a t e d t h a t when t h e y w e r e o n  unemployment o r w e l f a r e t h e y were a "burden on s o c i e t y . "  So  w o r k was a l s o m e a n i n g f u l i n t e r m s o f t h e a f f e c t i t h a d o n self-esteem.  P a r t i c i p a n t s f e l t t h a t , when w o r k i n g , t h e y w e r e  w o r t h w h i l e , c o n t i b u t i n g members o f s o c i e t y . I f e l t I was b e g i n n i n g down a p a t h o f e m p l o y m e n t — l i k e I was w o r t h s o m e t h i n g , b e c a u s e I was g e t t i n g p a i d f o r w h a t I d i d . There's k i n d o f a l i t t l e t h i n g t h e r e which i s kind of like a positive thing. A number o f p a r t i c i p a n t s f o u n d t h a t when u n e m p l o y e d t h e y h a d poor s e l f - e s t e e m .  F o r e x a m p l e one p e r s o n s a i d ,  s n o w b a l l s when y o u ' r e n o t w o r k i n g . yourself."  " I t kind of  You f e e l w o r s e  about  I t seemed, f r o m t h e i r s t a t e m e n t s t h a t t h e e s t e e m  b o o s t i n g e f f e c t o f w o r k was v e r y s i g n i f i c a n t b e c a u s e  of the  tremendous i m p a c t o f s c h i z o p h r e n i a on t h e i n d i v i d u a l ' s esteem.  One p e r s o n ' s comment i l l u s t r a t e s  self-  this.  You d o a g o o d j o b — e i t h e r y o u know i t o r y o u r b o s s t e l l s you, so t h a t h e l p s your s e l f - e s t e e m . I t h i n k t h a t ' s r e a l l y i m p o r t a n t b e c a u s e when y o u ' r e i l l y o u r s e l f esteem t a k e s such a b a t t e r i n g . T h r o u g h no f a u l t o f y o u r own. J u s t b e c a u s e y o u h a v e a n i l l n e s s . Because i t ' s such a funny d i s e a s e . Y o u know p e o p l e d o n ' t s a y — w e l l l i k e d i a b e t e s , i f y o u have d i a b e t e s t h e y don't blame you f o r i t . I f you have s c h i z o p h r e n i a and you y e l l a t  122 them, t h e y d o n ' t blame y o u r i l l n e s s , t h e y blame y o u o r i f t h e y do b l a m e y o u r i l l n e s s , t h e y ' r e s t i l l mad a t y o u . So y o u r s e l f - e s t e e m i s a f f e c t e d . The  f o l l o w i n g comments p r o v i d e g o o d e x a m p l e s o f t h e  e x p l a n a t i o n s o f t h e s e p a r t i c i p a n t s about t h e meaning t h a t w o r k h e l d f o r them. S e l f - e s t e e m , g e n e r a l w e l l - b e i n g , b e i n g a b l e t o f e e l good about y o u r s e l f — a n d i f y o u f e e l good about y o u r s e l f , you p r o b a b l y a r e c a p a b l e o f f e e l i n g g o o d a b o u t someone e l s e . I f y o u don't f e e l good about y o u r s e l f , y o u ' r e n o t g o i n g t o i n t e r a c t w i t h t h e r e s t o f mankind, humanity, v e r y w e l l a t a l l . I ' v e met some s c h i z o p h r e n i c s who d o n ' t work. T h e y ' r e on w e l f a r e a n d t h e y l i v e i n a k i n d o f a n almost a c h i l d e x i s t e n c e . They're being taken care o f . They're being parented. I t [welfare] takes care of t h e i r r o o f over t h e i r head and t h e i r food b u t i t doesn't do a n y t h i n g t o r e s t o r e t h e human, t h e b o d y , b a s i c a l y . S o m e t h i n g t o p r o v e - - a n d b e c a u s e I d o n ' t w a n t t o be a b u r d e n t o s o c i e t y — m a k e my own way, p a y my own t a x e s a n d — s e l f - e s t e e m — b u i l d i t up. And a l s o s o I don't have t o l i v e on h a l f t h e p o v e r t y l i n e . Thus, p a r t i c i p a n t s were v e r y m o t i v a t e d s a i d t h a t w o r k was m e a n i n g f u l  t o work.  Many  i n terms o f p r o v i d i n g purpose  and  s t r u c t u r e t o t h e i r l i v e s and p r o v i d i n g f i n a n c i a l b e n e f i t s  and  social relationships.  Another important  aspect  o f work  was t h e e f f e c t i t h a d o n c h a n g i n g t h e p e r s o n ' s i d e n t i t y t h a t of a s i c k person t o t h a t of a w e l l person. the negative  from  Because o f  e f f e c t o f s h c i z o p h r e n i a on t h e i n d i v i d u a l s '  s e l f - e s t e e m , w o r k was c o n s i d e r e d v e r y s i g n i f i c a n t . A l l p a r t i c i p a n t s i d e n t i f i e d t h e p o s i t i v e e f f e c t t h a t w o r k h a d on self-esteem. In conclusion, the participants' descriptions of the work-related  experience  reveals the following findings.  S e v e r a l p a r t i c i p a n t s i n d i c a t e d t h a t when a n y j o b was  123 considered work.  acceptable,  i t was n o t t o o d i f f i c u l t t o o b t a i n  When j o b s w i t h c e r t a i n w o r k i n g c o n d i t i o n s w e r e  desired,  i t was more d i f f i c u l t t o f i n d w o r k .  A common way t o  f i n d w o r k was t o make u s e o f a w i d e r a n g e o f r e s o u r c e s i n c l u d i n g those  a v a i l a b l e t o t h e general p u b l i c and those  d e v e l o p e d f o r p e o p l e w i t h s p e c i a l needs. skills,  Addressing j o b  g a p s i n r e s u m e s , a n d t h e d i a g n o s i s w e r e common a r e a s  of concern i n t h e j o b a p p l i c a t i o n process.  Many assumed  that  r e v e a l i n g t h e d i a g n o s i s w o u l d j e o p a r d i z e employment and w o u l d r e s u l t i n being wise t o "cover  treated "differently."  They c o n s i d e r e d i t  up" t h e i l l n e s s .  Each p a r t i c i p a n t ' s account r e v e a l e d t h a t t h e nature o f t h e i r i l l n e s s and t h e i r response t o being diagnosed  with  s c h i z o p h r e n i a a f f e c t e d t h e d e s i r e t o go t o w o r k , t h e a b i l i t y t o do j o b t a s k s , a n d t h e c o m f o r t l e v e l a t w o r k .  A number o f  p a r t i c i p a n t s p r e t e n d e d t o be " n o r m a l " a t work and w o r r i e d about being  "found o u t . "  most i n d i v i d u a l s b e i n g  ill  This increased j o b stress. For and being diagnosed  schizophrenia r e s u l t e d i n having work day, b e i n g  f i r e d o r having  with  t o take breaks during t h e to quit.  While i t involved a  g r e a t d e a l o f t r e p i d a t i o n , i n f o r m i n g an employer about t h e i l l n e s s was n o t n e c e s s a r i l y d e t r i m e n t a l , e s p e c i a l l y i f a g o o d work r e c o r d h a d a l r e a d y been a c h i e v e d Although  with that  employer.  i t was n o t a l w a y s e a s y , p e o p l e w e r e a b l e t o f i n d  j o b s t h a t were s a t i s f a c t o r y and even Participants'  enjoyable.  accounts revealed t h a t being  ill  resulted i n  124 being  unemployed f o r p e r i o d s  of time,  s t a r t i n g and s t o p p i n g  many j o b s , w o r k i n g a t many d i f f e r e n t t y p e s o f j o b s , a n d c h a n g i n g employment a m b i t i o n s . participants the work-related  For the majority of experiences,  particularly  going  t h r o u g h many j o b s , r e s u l t e d i n f e e l i n g s o f d i s c o u r a g m e n t , d i s a p p o i n t m e n t , embarrassment and g u i l t . M o t i v a t i o n t o w o r k was q u i t e h i g h d e s p i t e t h e employment d i f f i c u l t i e s . explained  f o r most p a r t i c i p a n t s The p a r t i c i p a n t s  t h a t w o r k was m e a n i n g f u l f o r p r o v i d i n g p u r p o s e a n d  structure to l i f e , relationships.  f o r f i n a n c i a l b e n e f i t s , and f o r s o c i a l  Many s a i d t h a t b e c a u s e o f t h e i m p a c t o f  i l l n e s s and d i a g n o s i s  on i d e n t i t y and s e l f - e s t e e m ,  e s p e c i a l l y important. self-esteem,  The m a j o r i t y s a i d t h a t w o r k  acknowledged t h e i r  made them f e e l  w o r k was improved  independant i d e n t i t y , and  l i k e t h e y w e r e a c o n t r i b u t i n g member o f  society. The C o p i n g S u c e s s f u l l y coping of being coping  Experience  with the illness  a b l e t o o b t a i n and m a i n t a i n  improved t h e chances  work.  Sucessfully  w i t h work improved t h e h e a l t h o f t h e p a r t i c i p a n t as i t  increased  self-esteem,  provided  increased  social relationships.  purpose and an i d e n t i t y and So t h e i l l n e s s a n d w o r k w e r e  v e r y much i n t e r w o v e n a n d f a c t o r s a f f e c t i n g one a l s o a f f e c t e d the  other.  125 Controlling I n f l u e n t i a l Factors Many p a r t i c i p a n t s developed work and that  an i n c r e a s e d illness.  i t was  One  found t h a t , ability  control the factors rather  said,  Individuals  One  As  control  was  v e r y much w a n t e d t o  t h a n h a v e someone e l s e ,  take control.  to  one  such  as  participant to look  after  o f t h e most i m p o r t a n t a s p e c t s o f b e i n g a b l e t o  self-  manage was  manage  gaining  yourself."  c o n t r o l of the medications.  o v e r d o s a g e meant h a v i n g some c o n t r o l  side-effects.  Although  unpredictability s t i l l  side-effects  improved  Having over  symptoms  a c e r t a i n amount o f  existed,  c o n t r o l l i n g symptoms  t h e chance o f b e i n g a b l e t o work.  at  o f management  " T h i s i s the whole p o i n t — i s t h i s a b i l i t y  yourself—to  and  or family,  they  t o manage f a c t o r s r e l a t e d  of the key elements  self-management.  professionals  as t i m e went by,  improved  As w e l l , c o n t r o l l i n g t h e  the chances of being a b l e t o  function  work. Probably the side e f f e c t s of the drugs i s r e a l l y the m o s t d i f f i c u l t p a r t — t h e g r o g g i e s . And i f y o u d o n ' t have your m e d i c a t i o n under c o n t r o l you're not g o i n g anywhere. That's the f i r s t thing—manage your medication. I f y o u ' v e g o t somebody e l s e t e l l i n g y o u what you're t a k i n g , you're not g o i n g anywhere, because y o u ' r e g i v i n g them t h e r e s p o n s i b i l i t y . You've g o t t o manage y o u r meds. The m e d s — f i n d i n g a b a l a n c e t h a t y o u know i s r i g h t and n o t w h a t someone e l s e t h i n k s . B e c a u s e y o u know w h a t ' s g o i n g on i n s i d e y o u r b o d y . A p e r s o n h a s t o — w i t h a l i t t l e l u c k he c a n f i n d a f a i r l y d e c e n t — a f a i r l y approprate l e v e l of medication which w o n ' t make h i m t o o g r o g g y o r t o o s l u g g i s h . You h a v e t o f i n d t h e r i g h t d o s e , and i f y o u ' r e n o t on t h e r i g h t d o s e i t ' s h e l l . . . [ Y o u ] want t o g e t t h e r i g h t dose.  126 Most p a r t i c i p a n t s found t h a t i t took time t o f i n d the  right  dose of m e d i c a t i o n . I t t o o k t i m e f o r me t o r e a l l y a c c e p t a n d f i n d a b a l a n c e w i t h my m e d i c a t i o n — t o l e t me c o n t r o l i t — t o l e t me f i n d , o v e r a p e r i o d o f t i m e , how much I n e e d and w h a t ' s right. I ' v e b e e n on t h e h a l d o l f o r f o u r y e a r s now and I'm still t r y i n g t o f i n d a b a l a n c e o f what i s r i g h t f o r m e — a n d h a v i n g t o t a k e t h e r i g h t amount e v e r y n i g h t . Rather t h a n h a v i n g t o go o f f i t a n d t h e n h a v i n g t o — l i k e t a k e t o o much. So I'm s t i l l t r y i n g t o f i n d t h a t b a l a n c e . P a r t i c i p a n t s had medication.  t h e i r own  Some j u s t t o o k  system  and r o u t i n e s f o r t a k i n g  i t when t h e y f e l t t h e y n e e d e d i t .  O t h e r s w o u l d t a k e i t e v e r y o t h e r day  o r e v e r y n i g h t , and  so  on. I f y o u h a v e a h a l l u c i n a t i o n , y o u know y o u ' v e g o t t o e i t h e r t a k e your h a l d o l — a n d i f you t a k e your h a l d o l l a s t n i g h t — t a k e your benztropine today. Because, I've f o u n d i n t a k i n g t h e b e n z t r o p i n e t h e way I was t a k i n g i t - i n t h e l a s t s i x months o r s o — t h e h a l d o l I w o u l d t a k e a l l a t n i g h t . . . T h a t ' s were i t ' s i m p o r t a n t — w h e r e the m e d i c a t i o n t h a t makes y o u s l e e p y , t r y and t a k e t h a t a t n i g h t — a n d t h e a m i t r i p t y l i n e and t h e h a l d o l t a k e t h a t a t night. And I f o u n d t a k i n g t h e b e n z t r o p i n e — t h e c o g e n t i n — i n t h e m o r n i n g , t h a t b r i n g s me up a l i t t l e bit. I'm t r y i n g t o t a k e i t a t e i g h t o ' c l o c k e a c h n i g h t t o r e s e m b l e w h a t t h e y w e r e d o i n g a t t h e b o a r d i n g home. L i k e make s u r e i t s on a r e g u l a r b a s i s . He [ t h e d o c t o r ] a c t u a l l y t o l d me, " f i n e i f y o u ' r e c o m f o r t a b l e w i t h n o t t a k i n g y o u r meds, t h e n d o n ' t t a k e them. When y o u n e e d t h e m t a k e t h e m . " So t h a t ' s w h a t I do. I j u s t go day t o day now, and i f I d o n ' t f e e l ok, well—pop a pill.. As p r e v i o u s l y m e n t i o n e d , s e v e r a l p a r t i c i p a n t s d e s c r i b e d how  b e i n g i l l meant d e a l i n g w i t h c h a n g e s i n t h e n e e d f o r  sleep.  O v e r t h e y e a r s , a number h a d  learned that  t h e amount o f s l e e p h e l p e d t h e m t o s t a y w e l l .  controlling  They  indicated  127 that balancing  sleep patterns  and g e t t i n g a good  s l e e p h e l p e d them f e e l b e t t e r and i n c r e a s e d get  u p , go t o w o r k a n d f u n c t i o n  night's  their ability to  effectively.  Sleep i s important. You n e e d e n o u g h [ m e d i c a t i o n ] t o have t h a t f u l l n i g h t s l e e p . T h a t ' s t h e one t h i n g I found w i t h t h i s i l l n e s s i s t h a t you r e a l l y need i t t o put you t o s l e e p — t o put you out a c e r t a i n a m o u n t — n o t t o zonk you o u t so y o u ' r e zonked f o r t h e n e x t few days b u t y o u need enough t o h e l p you s l e e p . I t h i n k i f y o u ' r e m e n t a l l y i l l , y o u h a v e more t r o u b l e w i t h your s l e e p p a t t e r n s — n o t as r e g u l a r as t h e y should be. So r e g u l a r s l e e p i s i m p o r t a n t . A n y t i m e t h a t I ' v e h a d t o go d i s r u p t my s l e e p — s a y a n e s s a y due o r o u t w i t h f r i e n d s New Y e a r s E v e — w h e r e I'm out l a t e — t h e n e x t few days j u s t a r e r e a l l y h a r d . Sleep i s v e r y i m p o r t a n t — k e e p i n g on a r e g u l a r b a s i s . A n d when I c a n , I t r y t o nap i n t h e a f t e r n o o n o r j u s t s i t down and r e l a x i n a c h a i r . A f u l l d a y i s j u s t t o o many t h i n g s g o i n g o n , a n d I h a v e t o g e t away. T h a t ' s why s l e e p i s so important. You h a v e t o g e t down t o z e r o a g a i n , so I can s t a r t t h e n e x t day. As i n d i c a t e d i n t h e above s t a t e m e n t , t a k i n g a r e s t d u r i n g d a y was a l s o c o n s i d e r e d  a n i m p o r t a n t way o f c o p i n g  the  with the  i l l n e s s . M o s t p a r t i c i p a n t s t r i e d t o b a l a n c e t h e amount o f t i m e s p e n t i n a c t i v i t y and r e s t .  One p a r t i c i p a n t  explained  t h a t , when h e f o u n d w o r k s t r e s s f u l , he made s u r e t h a t he g o t enough p h y s i c a l and m e n t a l r e s t  [sic].  T r y i n g t o do y o u r w o r k a n d h a v i n g t h i s i n y o u r m i n d , i t does p r o b a b l y d r a i n you. N o r m a l l y i f I've had a bad d a y , I come home a n d I j u s t s i t o n t h e c o u c h a n d vegetate. A n o t h e r way t h a t p a r t i c i p a n t s e n j o y e d " r e s t " was t h r o u g h a change o f a c t i v i t i e s .  Participants explained  i m p o r t a n t t o b a l a n c e work a c t i v i t i e s w i t h  t h a t i t was  leisure activities.  I t h i n k t h a t d e p e n d i n g on what t h e j o b i s — o u t s i d e o f t h a t — t h e y s h o u l d n ' t d e n y t h e i r own i n t e r e s t s t h e y h a d  128 before they got schizophrenia. I think schizophrenics s h o u l d be e n c o u r a g e d t o do t h i n g s . So w h a t i f t h e y ' r e n o t m a k i n g a n y t h i n g o u t o f i t f i n a n c i a l l y , as f a r as o u t s i d e of a job goes. They m i g h t have enjoyment. R u n n i n g — i t s k i n d o f l i k e — s a m e a s my t r u m p e t — I k i n d o f make i t a t r e a t , b e c a u s e i t ' s n o t w o r k and b e c a u s e t h e r e s no p r e s s u r e i n v o l v e d w i t h i t . I save the p r e s s u r e f o r work. I t h i n k p e o p l e a r e more i n t e r e s t e d i n w h a t t h e y ' r e g o i n g t o do w i t h t h e i r l e i s u r e t i m e . I t h i n k w h a t I do w i t h my l e i s u r e t i m e — p l a y i n g S o f t b a l l and c a m p i n g , s t u d y i n g f r e n c h and I'm t r y i n g t o w r i t e a n o v e l and s t u f f l i k e t h a t . . . W h a t I do w i t h my l e i s u r e t i m e i s g e t t i n g more i m p o r t a n t t o me t h a n w h a t I do a t w o r k . M o s t p a r t i c i p a n t s s a i d t h a t i t was time spent i n l e i s u r e a c t i v i t i e s , l e i s u r e a c t i v i t y t h a t was importance of chosing  not but  important.  health-oriented  j u s t the i t was  amount o f  a l s o t h e type  They a c k n o w l e d g e d  One  p e r s o n i n p a r t i c u l a r s a i d t h a t she  conscious of choosing h e a l t h - o r i e n t e d  the  leisure activities,  t h a t i s , a c t i v i t i e s t h a t i m p r o v e d o n e ' s m e n t a l and health.  of  was  physical now  a c t i v i t i e s than i n  more the  past. R e c e n t l y I g o t a m e m b e r s h i p a t t h e "Y" and I'm w o r k i n g out. And I c h a n g e d t h a t a r o u n d f r o m w h e r e b e f o r e I ' d s a y , " l e t ' s go t o t h e b a r " , now I s a y , " l e t s go f o r a walk." I don't r e g r e t going t o bars. I t was f u n t i m e s . This i s fun too. F e e l i n g h e a l t h y — f e e l i n g good about m y s e l f and k n o w i n g I'm d o i n g s o m e t h i n g t h a t ' s g o o d f o r me. A n o t h e r p a r t i c i p a n t ' s comment i l l u s t r a t e s t h e  s i g n i f i c a n c e of  l e i s u r e a c t i v i t i e s for preventing  i t ' s associated  b o r e d o m and  problems. T h e r e ' s a l w a y s about f i f t e e n m i l l i o n books I want t o r e a d , s o I'm a l w a y s i n t e r e s t e d i n t h i s o r t h a t — music,playing with languages. So t h e r e ' s a l w a y s p l e n t y o f t h i n g s t o be i n t e r e s t e d i n ; So I t h i n k b o r e d o m i s a b i g p r o b l e m as t o g e t t i n g a l o t o f p e o p l e i n t o t r o u b l e . They c a n ' t cope w i t h a j o b o r a n y t h i n g , so t h e y d r i f t  129 around and t h e y g e t bored and t h e y g e t i n t o drugs o r a l c o h o l and t h a t c o m p l i c a t e s e v e r y t h i n g . Smoking a l l the t i m e — a n d i t complicates everything. Another area important  i n w h i c h many p a r t i c i p a n t s f o u n d c o n t r o l  was t h e i r d i e t .  as w e l l a s e a t i n g  E a t i n g a s u f f i c i e n t amount o f f o o d  "healthy" meals maintained  p h y s i c a l health thus enabling  m e n t a l and  t h e p e r s o n t o work.  I s t a r t e d e a t i n g more q u i c k f o o d s b e c a u s e I was s o b u s y a t s c h o o l t h a t I h a d no t i m e f o r l u n c h — o r go f o r a coffee or juice instead of a f u l l dinner. So my d i e t went d o w n h i l l . My v i t a m i n s w e n t d o w n h i l l . My s t r e s s went u p h i l l . So I'm s u r e t h a t h a d s o m e t h i n g t o do w i t h r e l a p s e — p u s h i n g m y s e l f t o o h a r d and n o t t a k i n g i t easy enough. Because I t r u l y b e l i e v e i t ' s a medical problem and y o u h a v e t o t r e a t i t m e d i c a l l y — w i t h t h e r i g h t c h e m i c a l s and t h e r i g h t l i f e s t l y e and push t h a t t o o h a r d and i t b r e a k s down c o m p l e t l y . You j u s t have t o f i n d t h e r i g h t l e v e l and keep t o t h a t — l o t s o f s l e e p and good food and normal hours. Some p a r t i c i p a n t s f o u n d t h a t c e r t a i n f o o d s w e r e w o r s e t h a n others,  a s o n e p e r s o n s a i d , " I f I h a v e t o o much c o f f e e o r pop  t h e n I c a n ' t s l e e p and i t g e t s worse."  As w e l l ,  o n e p a r t i c i p a n t s a i d t h a t a d e q u a t e i n t a k e was p a r t i c u l a r l y important  when h e was o n  medication.  I f y o u d o n ' t e a t , y o u j u s t s o r t o f f a d e away f r o m t h e w o r l d . Y o u s l e e p a l o t more. Y o u r meds a r e s o r t o f t a k i n g o v e r — i n s t e a d of you. One p a r t i c i p a n t ' s s t a t e m e n t i l l u s t r a t e s t h e c o m p l e x i t y of f a c t o r s i n f l u e n c i n g t h e i n d i v i d u a l s ' h e a l t h .  In h i s  comment, h e m e n t i o n s a l l t h e f a c t o r s w h i c h h a v e t o b e controlled.  I n a d d i t i o n , he p o i n t s o u t how s t r e s s f u l  i t i s  t o manage t h e s i t u a t i o n . The a v e r a g e p e r s o n who's n o n s c h i z o p h r e n i c c a n go o u t a n d p a r t y u n t i l 2 o r 3 o ' c l o c k i n t h e morning and p u t i n a r e a s o n a b l e d a y s w o r k . The p e r s o n w i t h s c h i z o p h r e n i a  130 r e a l l y needs t h a t s l e e p , because i f you don't get t h a t you can r e a l l y have problems. So y o u h a v e a r e s p o n s i b i l i t y t o t a k e m e d i c a t i o n , g e t enough s l e e p , watch your d i e t . Which a g a i n i s another r e s p o n s i b i l i t y which t h e normal person doesn't h a v e — w h i c h can i n c r e a s e t h e s t r e s s l e v e l a g a i n b e c a u s e y o u know y o u h a v e s c h i z o p h r e n i a and y o u h a v e t o h a v e s l e e p . You j u s t h a v e t o be more a w a r e o f t h e s e t h i n g s . You r e a l l y do h a v e t o worry about y o u r s e l f . One o f t h e f i r s t s t e p s t o b e c o m i n g a human b e i n g a g a i n i s m a n a g i n g y o u r medication. And y o u h a v e t o t a k e c o n t r o l , b e c a u s e y o u know y o u r own n e e d s and m o s t s c h i z o p h r e n i c s t a k e w h a t they're t o l d . You know w h a t y o u n e e d t o l i v e t h e way you want t o l i v e . I n summary, m o s t p a r t i c i p a n t s e x p l a i n e d t o self-mange t h e i r  illness.  that they  T h e y f e l t t h a t i t was  important  t o have c o n t r o l , as t h e y were t h e most aware o f t h e i r needs.  P a r t i c i p a n t s s a i d t h a t t h e i r h e a l t h was  they c o n t r o l l e d the medications, l e i s u r e t i m e and  s l e e p and  wanted  own  i m p r o v e d when  r e s t , use  of  i t appeared t h a t t h r e e types  of  diet.  U s i n g Support Systems From t h e a c c o u n t s ,  s u p p o r t s were c o n s i d e r e d i m p o r t a n t t o t h e p a r t i c i p a n t s i n the study; aid.  f a m i l y and  f r i e n d s , c o m m u n i t y s e r v i c e s , and  Because of a l l the d i f f i c u l t i e s a s s o c i a t e d w i t h  the i l l n e s s , significant.  having  support  from f a m i l y and  f r i e n d s had  b r o u g h t a b o u t by t h e i l l n e s s ,  t o be p a r t i c u l a r l y s e n s i t i v e t o  i n d i v i d u a l ' s needs.  Having  f r i e n d s and  family  i n d i v i d u a l s t o r e m a i n i n t o u c h w i t h r e a l i t y and c h a n g e s i n t h i n k i n g and  perceiving.  having  f r i e n d s was  In a d d i t i o n , because of the d i f f i c u l t y  r e l a t i n g to others, and  financial  the  very  in family  the helped deal  with  131 H a v i n g a f e w s t a b l e p e o p l e i n my l i f e — s o m e b o d y a t w o r k who i s a w a r e o f y o u r c o n d i t i o n a n d i s v e r y s t a b l e . A s u p p o r t g r o u p — p e o p l e who d o n ' t n e c e s s a r i l y h a v e e m o t i o n a l ups and d o w n s — t h a t a r e v e r y s t a b l e p e o p l e . Get a bunch o f t h o s e i n your l i f e t h e n y o u c a n i d e n t i f y reality. As w e l l a s h e l p i n g them t o m a i n t a i n r e a l i t y o r i e n t a t i o n ,  many  i n d i c a t e d t h a t f a m i l y and f r i e n d s were needed i n o r d e r f o r them t o f e e l c o m f o r a t b l e b e i n g around f o l l o w i n g statements  illustrate,  people.  As t h e  several participants  t h a t h a v i n g s o c i a l r e l a t i o n s h i p s improved  found  t h e chances o f  b e i n g a b l e t o work w i t h p e o p l e . I hated i n t e r a c t i o n w i t h other people because I g o t p a r a n o i d a n d I g o t h y p e r . . . I t ' s s e t t l e d down now t h a t I h a v e more s o c i a l c o n t a c t s . So t h a t ' s a g o o d p o i n t , b e c a u s e I h a d no s o c i a l l i f e a t a l l . So I s t i l l l i k e b e i n g somewhat s o l i t a r y i n w h a t I'm d o i n g , s o I c a n concentrate. Otherwise I g e t e a s i l y d i s t r a c t e d — b u t when I was p a r a n o i d i t was h o p e l e s s . I'd just quit. I ' d t h i n k t h e y w e r e t a l k i n g b e h i n d my b a c k . . . S o h a v i n g s o c i a l s u p p o r t i s r e a l l y i m p o r t a n t because once you i n t e r a c t w i t h people f o r a whilethen you're not so a f r a i d of people. Y o u know w h a t t o e x p e c t . I could w o r k w i t h o t h e r p e o p l e now, p r o b a b l y . When I h a d no s o c i a l l i f e a t a l l , i t was i m p o s s i b l e . S o c i a l r e l a t i o n s h i p s h a d t o come f i r s t — a n d d e v e l o p i n g skills. And b e i n g a t [ t h e c l u b h o u s e ] h e l p e d . P a i d work had t o come a f t e r I h a d some c o n f i d e n c e a n d s o c i a l relationships. P a r t i c i p a n t s r e c e i v e d h e l p f r o m f r i e n d s o r f a m i l y when obtaining jobs.  The i n d i v i d u a l s ' p a r e n t s w o u l d  them t o t r y a g a i n , o r f r i e n d s w o u l d s u g g e s t  encourage  available jobs.  Dad b e i n g t h e r e a l i s t i n my l i f e came i n t o t h e room, a n d he s a i d [ s o n ] I t h i n k [ t h e s t o r e ] i s g o i n g t o f o r g e t a b o u t y o u , s o y o u b e t t e r go l o o k f o r a j o b . So i t was back t o t h e boards. T h i n g s t h a t h a v e h e l p e d me f i n d a j o b — w o u l d b e p r o b a b l y my mom a n d d a d o n my f i r s t j o b a n y w a y s , b e c a u s e I d i d n ' t w a n t a j o b when I f i r s t g o t a j o b . A n d my mom w o u l d  132 s a y , " y o u ' v e g o t t o go b a c k and k e e p g o i n g b a c k and b u g g i n g t h e m . " — a n d s t u f f l i k e t h a t . And I d i d t h a t , a n d g o t a j o b one summer. When I was l i v i n g a t [ t h e g r o u p home] a n d I was l o o k i n g f o r a j o b — m y b e s t f r i e n d h a d g o t t e n a j o b a n d he was s t i l l l i v i n g t h e r e . He k e p t t e l l i n g m e — a n d t h e r e was s o r t of a c o m p e t i t i o n t h e r e — h e ' d say, "you're going t o f i n d a j o b . " Well a l o t of people around here read the m o r n i n g p a p e r and s a y t o somebody i n t h e room, " l o o k a t t h i s j o b . Why d o n ' t y o u l o o k i n t o i t . " — o r t h a t s o r t o f t h i n g h a p p e n s . "Why d o n ' t we l o o k i n t o i t . " - o r " A r e y o u i n t e r e s t e d i n t h i s o r a r e you i n t e r e s t e d i n t h a t ? " — i n t h e m o r n i n g p a p e r e v e r y day. Apart  from the support  o f f a m i l y and  friends,  s u p p o r t p r o v i d e d by c o m m u n i t y s e r v i c e s was v a l u a b l e by many p a r t i c i p a n t s .  the  considered  Their accounts  indicated  community s e r v i c e s h e l p e d them d e a l w i t h t h e i l l n e s s work.  that  and  P a r t i c i p a n t s e x p l a i n e d t h a t community s e r v i c e s h e l p e d  them t o l e a r n l i f e s e l f - e s t e e m and  and w o r k s k i l l s ,  to b u i l d confidence  t o l e a r n about the i l l n e s s .  s a i d he h a d  l e a r n e d a b o u t h i s i l l n e s s and  medication,  a t a h o s p i t a l day program.  d i d n ' t r e a l i z e how  he h a d  He  One  participant  t h e need t o  take  added t h a t  b e n e f i t e d u n t i l much  he  later.  I t ' s daycare which i s next t o [the h o s p i t a l ] . . . I know w h a t i t h a d done f o r me u n t i l t i m e h a d p a s t u n t i l I h a d g o n e on t o o t h e r t h i n g s . And I t h i n k i t r e a l l y d i d f o r m e — b e c a u s e I h a d made t h e d e c i o h , I'm g o i n g t o t a k e t h e m e d i c a t i o n . Another person  and  didn't on— what sion—  s a i d t h a t the group i n t e r a c t i o n a t a  r e h a b i l i t a i o n program h e l p e d him g a i n c o n f i d e n c e and  self-  esteem. A l l d a y I ' d be a s k e d q u e s t i o n s b a c k and f o r t h — a n d y o u ' d s t a r t t o t r y t o f i n d t h e g o o d i n t h e m and y o u s t a r t b u i l d i n g t h a t p e r s o n up. And I g u e s s y o u d o n ' t r e a l i z e i t , b u t t h e y ' r e b u i d i n g y o u up t o o . You s t a r t b u i l d i n g  133 t h a t p e r s o n up and t a l k i n g a b o u t t h e i r i n t e r e s t s — a n d I ' d be d o i n g t h a t a l l d a y - — a n d I d i d g e t s o m e t h i n g o u t of i t . O t h e r s m e n t i o n e d t h e p a r t i c u l a r s k i l l s t h a t t h e y had through  gained  community programs.  When I was g o i n g t o [ a r e h a b i l a t a t i o n p r o g r a m ] I b e g a n t o become more s e l f - c o n f i d e n t — m o r e a s s e r t i v e w i t h s m a l l t h i n g s — j u s t b u i l d i n g up j o b s k i l l s a n d l i f e s k i l l s . W o r k i n g i n t h e l u n c h u n i t f o r two y e a r s , I l e a r n e d how t o cook. P l u s I was i n t h e j a n i t o r i a l u n i t s o I l e a r n e d how t o c l e a n . P l u s I h a v e my a p a r t m e n t t o c l e a n r i g h t now. T h e y t a u g h t me how t o do s t u f f l i k e t h a t . You need e x t r a h e l p i n t h a t i f you're s c h i z o p h r e n i c . The  c o m m u n i t y s e r v i c e s seemed t o p r o v i d e an a c c e p t a n c e  found  not  elsewhere. No m a t t e r how That's r e a l l y i s o l a t e d from n o w h e r e t o go They Like each like  l o w down y o u s i n k , t h e r e ' s a p l a c e t o go. i m p o r t a n t , because so o f t e n p e o p l e g e t t h e i r f a m i l i e s and t h e y h a v e r e a l l y o r nowhere t h e y f e e l i s t h e i r f a m i l y .  have a wide s u p p o r t i v e network [ a t t h e c l u b h o u s e ] . t h e y h a v e l o t s o f b r e a k s s o t h e y g e t t o smoke w i t h o t h e r and h a v e c o f f e e t o g e t h e r and s o o n . . . I t ' s a s u p p o r t i v e environment.  I h a d a s e n s e o f b e l o n g i n g and no m a t t e r w h a t I d i d I was a c c e p t e d t h e r e f o r who I was. I was a c c e p t e d a s t h e w i t h d r a w n s h y , c r a z y p e r s o n who c o u l d o n l y c h o p a few vegetables. H a v i n g a p l a c e t o go w h e r e t h e y d i d n ' t h a v e t o " p r e t e n d " important  was  b e c a u s e , a s d i s c u s s e d b e f o r e , many p a r t i c i p a n t s  "pretended  t o be n o r m a l " a t w o r k .  clubhouses  s a i d they  T h o s e who  f e l t comfortable  d i d n ' t have t o " h i d e " t h e i r  went t o  t h e r e , because  they  illness.  I f i n d g o i n g up t o [ t h e c l u b h o u s e ] f i n e b e c a u s e y o u c a n r e l a x t h e r e . People don't j u s t s i t around t a l k i n g about t h e i r i l l n e s s e s , but you can s t i l l t a l k about i t w i t h people. I m o s t l y go t h e r e f o r s o c i a l t i m e s i n t h e  134 evening...Nobody r e a l l y t a l k s about t h e i r i l l n e s s a l o t . I t k i n d o f p u t s a l i t t l e p r e s s u r e on y o u , n o t s a y i n g a n y t h i n g a t work. F o r some p a r t i c i p a n t s ,  a t certain times, the jobs  established  by t h e c o m m u n i t y s e r v i c e w e r e t h e m o s t s u i t a b l e f o r m e e t i n g the i n d i v i d u a l ' s  needs.  T h i s [clubhouse] t h a t I ' d been g o i n g t o , t h e y have low s t r e s s j o b s such as w o r k i n g on t h e n e w s l e t t e r , c l e a n i n g t h e k i t c h e n , c l e a n i n g t h e house. So y o u f e e l l i k e you're working. You a c t u a l l y a r e w o r k i n g , b u t i t ' s f a i r l y low p r e s s u r e and y o u don't have t o phone i n s i c k or you don't have t o worry about e x p e c t a t o n s — s o everybody's q u i t e understanding. So i t ' s a n i c e balance. The c l u b h o u s e i s w h e r e I w o r k a n d I'm p r e t t y w e l l — I s o r t o f f i t i n up t h e r e and i t ' s v e r y s e c u r e . I don't r e a l l y know how I ' d do i n a n o t h e r s e t t i n g . On t h i s j o b h e r e , I ' v e b e e n w o r k i n g f o r 13 w e e k s w i t h o u t b e i n g — b u t i t ' s i n a s u p p o r t i v e work program—without m i s s i n g a d a y , o r b e i n g l a t e o r a n y t h i n g — d o my q u o t a everyday, o f c a b l e s — i t ' s only 4 hours. I don't t h i n k I c o u l d do i t f o r e i g h t h o u r s F o r some t h e c o m m u n i t y s e r v i c e s p l a y e d a v e r y l a r g e r o l e i n t h e i r e m p l o y m e n t a n d h e a l t h s t a t u s , a s one i n d i v i d u a l  said,  " I was c l u e d o u t o f i t j u s t s e v e n y e a r s a g o a n d now t h e y — I p r e t t y w e l l owe e v e r y t h i n g I ' v e d o n e s i n c e t h e n t o t h e m . " The t h i r d a r e a o f s u p p o r t was f i n a n c i a l s u p p o r t .  As  w i t h t h e o t h e r t y p e s o f s u p p o r t , f i n a n c i a l s u p p o r t seemed t o h e l p many t h e i n d i v i d u a l s t o c o p e w i t h t h e i l l n e s s a n d m a i n t a i n h e a l t h , and i t i n f l u e n c e d t h e i n d i v i d u a l s ' status.  work  F i n a n c i a l s u p p o r t came i n t h e f o r m o f r e n t a l  a s s i s t a n c e and d i r e c t income.  Some p a r t i c i p a n t s s a i d t h a t  s u p p o r t e d h o u s i n g a c t u a l l y s e r v e d a s a m o t i v a t o r f o r them t o  135 get a job.  They d i d n ' t have t o w o r r y  a b o u t how  much money  t h e y made, s o t h e y c o u l d g e t a p a r t - t i m e , l o w s t r e s s j o b still  afford  "nice"  and  accomodation.  L i k e you're o n l y paying t h i r t y percent of your s a l a r y , t h e n y o u c a n a f f o r d t o do t h e l o w p a y i n g j o b s . This p l a c e g i v e s you i n c e n t i v e t o get a j o b because y o u ' l l h a v e more m o n e y — a n d t h e y o n l y r a i s e y o u r r e n t t o t h i r t y percent. So i t ' s a n i n c e n t i v e f o r me t o be p a y i n g more r e n t — b e c a u s e y o u ' r e p u l l i n g y o u r w e i g h t more. It p r o t e c t s y o u i n a way. I f y o u ' r e h a v i n g t r o u b l e w i t h your j o b , i t g i v e s you s e c u r i t y . Takes a l o a d o f f your mind. S u i t a b l e h o u s i n g was One "I  considered s i g n i f i c a n t to  person emphasized the importance  participants.  o f h o u s i n g as she  t h i n k h a v i n g a p l a c e i s j u s t as i m p o r t a n t as h a v i n g  job."  S i m i l a r comments w e r e made a b o u t p e n s i o n s .  a handicap  said, a  Receiving  p e n s i o n made i t e a s i e r f o r i n d i v i d u a l s t o w o r k a t  low p a y i n g , low s t r e s s j o b s . L i k e i f somebody r e a l l y n e e d s a h a n d i c a p p e n s i o n , t h e y s h o u l d h a v e i t — w h o may be a b l e t o w o r k p a r t t i m e , b u t w i l l n e v e r be a b l e t o s u p p o r t t h e m s e l v e s . I t h i n k they s h o u l d be on a p e n s i o n and t h e n w o r k a s much a s t h e y can. As  i n d i c a t e d i n t h e p r e v i o u s comments, t h e r e n t a l a s s i s t a n c e ,  in  a n i n d i r e c t way,  decreased  helped the person t o remain w e l l .  the stress associated with  responsibilities.  The  It  financial  d i s a b i l t y pensions a v a i l a b l e f o r  i n d i v i d u a l s had a s i m i l a r  effect.  When y o u c a n ' t w o r k — a n d y o u d o n ' t h a v e t o move o u t a l l of a sudden [because of t h e p e n s i o n ] — a n d t h e r e ' s t h a t b i t o f f l e x i b i l i t y i n t h a t p e n s i o n t o o . When y o u c a n ' t w o r k y o u d o n ' t h a v e t o r e a p p l y . I t comes b a c k a u t o m a t i c a l l y , s o y o u d o n ' t h a v e t o go t h r o u g h a l l t h e p a p e r w o r k a g a i n . So t h a t w o r k s o u t v e r y w e l l .  136 The  s i g n i f i c a n c e of these f i n a n c i a l supports  being  to the well  o f p a r t i c i p a n t s was made c l e a r i n t h e s t a t m e n t s o f t w o  of t h e p a r t i c i p a n t s . I t h i n k a t t h i s p o i n t I should say a l o a d o f s t r e s s has come o f f me, b e c a u s e I ' v e b e e n a b l e t o g e t money f r o m t h e g o v e r n m e n t — b e c a u s e I'm o n d i s a b i l i t y . So t h a t ' s why I'm k e e p i n g a n a p a r t m e n t . O t h e r w i s e I w o u l d n ' t be able t o a f f o r d i t o f course. My p a r e n t s w e r e s u p p o r t i n g me, b e c a u s e I c o u l d n ' t make e n o u g h t o l i v e o n my own. I was c o n s i d e r i n g m o v i n g b a c k home w i t h t h e m , b u t my d o c t o r s u g g e s t e d t h a t I k e e p my own p l a c e , b e c a u s e I become t o o d e p e n d e n t a n d t o o w i t h d r a w n i f I move home again. So s h e s u g g e s t e d t h a t I s h o u l d g e t t h i s — a n d s o I c o u l d k e e p my own p l a c e . She h o p e s t h a t I w i l l g e t b e t t e r s o t h a t I c a n g e t work. So t h a t ' s a t r e m e n d o u s s t r e s s o f f me. I t ' s t a k e n a l o t o f p r e s s u r e o f f me. L i k e b e f o r e when I was w o r k i n g , I ' d t h i n k I h a v e t o e a r n a t l e a s t t e n d o l l a r s an h o u r — o r have t o have a good j o b o r I c a n ' t a f f o r d t o l i v e and so on. Here, i f I l o s e a j o b , t h e r e n t g o e s down. I f I g e t a j o b , t h e r e n t g o e s up....That's a b i g weight o f f your s h o u l d e r s — b e c a u s e I know w h a t t h e t e n d o l l a r a n h o u r j o b s a r e like....There's a l o t of pressure. I n summary, many s a i d t h a t f a m i l y a n d f r i e n d s  helped  them t o s t a y i n t o u c h w i t h r e a l i t y and e n c o u r a g e d them t o f i n d work.  From t h e i r a c c o u n t s , i t a p p e a r e d t h a t  s o c i a l r e l a t i o n s h i p s was a n i m p o r t a n t working with other people. supports  were v a l u a b l e  step  i n progressing t o  The m a j o r i t y s a i d t h a t  i n providing unconditional  They s a i d t h e y c o u l d r e l a x , and n o t have t o P a r t i c i p a n t s who a t t e n d e d skills  and j o b s k i l l s ,  confidence  improved.  developing  community acceptance.  "pretend."  community programs l e a r n e d  and found t h e i r s e l f - e s t e e m  life  and s e l f -  F o r some p a r t i c i p a n t s , t h e c o m m u n i t y  programs o f f e r e d t h e most s u i t a b l e work.  Financial  support,  t h a t i s r e n t a l a s s i s t a n c e a n d i n c o m e a s s i s t a n c e , made i t  e a s i e r f o r some p a r t i c i p a n t s t o w o r k a s t h e y c o u l d w o r k a t j o b s t h a t p a i d l e s s b u t were a l s o l e s s s t r e s s f u l .  Financial  a s s i s t a n c e was a l s o a b e n e f i t t o m e n t a l h e a l t h a s i t decreased t h e p a r t i c i p a n t ' s f i n a n c i a l S e l e c t i n g Working  worry.  Conditions  P a r t i c i p a n t s i n d i c a t e d t h a t , as w e l l as c o n t r o l l i n g c e r t a i n f a c t o r s and u s i n g support systems, s e l e c t i n g jobs w i t h s u i t a b l e working c o n d i t i o n s improved t h e i r chances o f being  able t o maintain  employment.  As one p e r s o n  stated,  " C e r t a i n jobs b r i n g out g r e a t e r problems than others. n e e d t o f i n d s o m e t h i n g t h a t y o u c a n manage." having illness  gone t h r o u g h s e v e r a l j o b s and h a v i n g f o r a period of time,  You  I t seemed  that,  lived with the  i n d i v i d u a l s were a b l e t o  d i s c e r n t h e i r own n e e d s a n d a r e a s o f v u l n e r a b i l i t y .  They were  t h e r e f o r e a b l e t o i d e n t i f y work c o n d i t i o n s t h a t were t h e most favorable  f o r them.  One i n d i v i d u a l s comment  illustrates  this. I'm j u s t g e t t i n g c l o s e r t o k n o w i n g w h a t my l e v e l s a r e . So i f I g o i n t o a j o b i n t e r v i e w a n d t h e y t e l l me c e r t a i n t h i n g s a n d I know I c a n ' t do t h a t — w e l l , t h e r e ' s no p o i n t i n s a y i n g , y e s I c a n do t h a t , b e c a u s e I know I won't be a b l e t o . P a r t i c i p a n t s i d e n t i f i e d c e r t a i n work c o n d i t i o n s t h a t considered  when s e l e c t i n g a j o b .  of mental involvement.  they  One was t h e amount a n d t y p e  Some p r e f e r r e d w o r k w i t h a m o d e r a t e  amount o f m e n t a l demand. When I was s t o c k i n g t h e s h e l v e s — y o u ' r e m o v i n g a n d i t ' s low l e v e l t h i n k i n g — b u t y o u r mind i s w o r k i n g , b u t i t ' s not overworking and i t ' s n o t underworking. It's just w o r k i n g a t a medium l e v e l . And t i m e goes q u i c k l y . I f  138 you're j u s t s t a n d i n g t h e r e , t h e t i m e goes so s l o w l y . T h a t ' s when y o u r m i n d s t a r t s p l a y i n g t r i c k s o n y o u . So d o i n g t h i n g s o n a l o w e v e n l e v e l seems t o b e t h e b e s t thing—with a little variation. To make t h e w r o n g d e c i s i o n — t h e n y o u ' r e r e a l l y g o i n g t o get y o u r s e l f i n t r o u b l e . So t h e k i n d o f w o r k y o u ' v e g o t to s t a r t o f f with i s not necessarily a p h y s i c a l n o n t h i n k i n g j o b — b e c a u s e y o u do n e e d t o t h i n k . Y o u do n e e d t o e x e r c i s e t h e b r a i n . Maybe s o m e t h i n g t h a t doesn't require d e c i s i o n — d o i n g t e c h n i c a l c a l c u l a t i o n s — or something l i k e t h a t . N o t h i n g t h a t r e q u i r e s an o p i n i o n , b e c a u s e a l o t o f y o u r o p i n i o n s a r e b a s e d on your f e e l i n g s about something. O t h e r s p r e f e r r e d work w i t h  little  m e n t a l demand.  I d o n ' t l i k e w o r k t h a t i s m e n t a l l y d e m a n d i n g . I'm n o t s u r e what i t i s . I k i n d o f l i k e work t h a t ' s g o t a p h y s i c a l component t o i t — a n d a b i t o f a m e n t a l c o m p o n e n t t o o . I t ' s j u s t my p e r s o n a l p r e f e r e n c e . I l i k e t o do my own s t u f f a n d i f I'm t o o t i r e d o u t m e n t a l l y , I c a n ' t do w h a t I w a n t t o do on t h e s i d e . A n o t h e r a s p e c t o f work c o n d i t i o n s , t h a t p a r t i c i p a n t s considered, job. and  was t h e amount o f p h y s i c a l i n v o l v e m e n t i n t h e  A g a i n , t h e r e were i n d i v i d u a l d i f f e r e n c e s i n t h e t y p e amount o f p h y s i c a l i n v o l v e m e n t  desired.  I j u s t thought of something I f i n d t h a t ' s very important i s — when I'm w o r k i n g I w a n t t o be d o i n g s o m e t h i n g . . . I w a n t t o be e i t h e r d o i n g s o m e t h i n g w i t h my h a n d s o r some a c t i v i t y — n o t as I s a i d very r e p e t i t i v e , f a s t t y p e o f w o r k , b u t s o m e t h i n g w h e r e I'm d o i n g s o m e t h i n g — r a t h e r t h a n s a y a s — l i k e a s a l e s p e r s o n , w h e r e I'm. s t a n d i n g around. I l i k e d t h e s e c u r i t y j o b because I walked around i n a c i r c l e a l l t h e t i m e and burned o f f a l o t o f energy t h a t way. It gets r i d of a l i t t l e b i t of i r r i t a t i o n — b e c a u s e you're doing something r a t h e r than j u s t standing therej u s t t h i n k i n g a l l the time. So t h e n a t u r e o f t h e w o r k seems v e r y important. Some p a r t i c i p a n t s p r e f e r r e d a j o b w h i c h contact  w i t h a l i m i t e d number o f p e o p l e .  involved  139 H a v i n g t o d e a l w i t h somebody i n t h e o f f i c e a l l t h e t i m e can get r e a l l y s t r e s s f u l . L i k e i f you were a w a i t r e s s or a w a i t e r — a n d having to deal with the p u b l i c — o r i n s a l e s . I t w o u l d be v e r y v e r y c o m p l i c a t e d . Because as a s a l e s p e r s o n y o u ' r e h a v i n g t o r e a d t h e p e r s o n and h a v i n g t o r e a c t , and w i t h schizophrenia your information y o u ' r e g e t t i n g i s a l l — o r c a n be i n c o r r e c t . You c a n r e a l l y get y o u r s e l f i n d i f f i c u l t y . So l i m i t i n g t h e number o f p e o p l e y o u h a v e t o d e a l w i t h , i n i t i a l l y , i s a good d e c i s i o n . M o s t l y a j o b w h e r e y o u d o n ' t h a v e t o be a r o u n d p e o p l e . I'm s o c i a l l y h a n d i c a p p e d — e i t h e r not around people h a r d l y a t a l l o r my own business. O t h e r p a r t i c i p a n t s wanted t o work w i t h p e o p l e . s a i d , about work, t h e Another person said,  "social contact  people...I  they  d e a l w i t h p e o p l e a l l day  f o r a j o b s was  t h e t i m e o f day  be  they're  " I l i k e t o work around  long."  that i n d i v i d u a l s considered t h a t one  p a r t i c i p a n t s p r e f e r r e d r e g u l a r day or night  rewarding."  s a y t h a n k s and  Yet another i n d i v i d u a l s a i d ,  Another aspect  person  " I t becomes s o c i a l . . . I t ' s g o o d t o  a b l e t o h e l p t h e c a s h i e r , and polite."  i s very  One  had  when a p p l y i n g  t o w o r k . Some  s h i f t s rather than  evening  shifts.  I w o r k e d g r a v e y a r d s h i f t a t t h e [ j o b ] l a s t summer and i t was t e r r i b l e , t e r r i b l e . I c o u l d n ' t h a v e k e p t i t up f o r very long. So I t h i n k r e g u l a r h o u r s d u r i n g t h e day a r e important unless you're a n i g h t person. A n o t h e r p a r t i c i p a n t p r e f e r r e d t o work e v e n i n g  shifts.  He s a i d , " I f i n d i t e a s i e r d o i n g s h i f t w o r k t h a n w o r k i n g a t 7:30 i n t h e m o r n i n g . I t s h a r d f o r me." S e v e r a l p a r t i c i p a n t s e x p l a i n e d t h a t when w o r k i n g d a y s h i f t , they  d i d not want t o s t a r t work t o o e a r l y . We s t a r t a t t e n o ' c l o c k . I f I wake up a t e i g h t o ' c l o c k , I d o n ' t h a v e any r u s h t o g e t t h e r e . I don't s t a r t t i l l ten o'clock. So a l a t e r s t a r t i n g t i m e i s b e t t e r f o r me  140 b e c a u s e I'm t e r r i b l e i n t h e m o r n i n g . M o r n i n g i s my worst time. So t h a t w o r k s o u t n i c e t o o , s t a r t i n g a t t e n o'clock. I t e n d t o w o r k b e s t i n t h e m i d d l e o f t h e d a y , 10 t o 3 seem t o be my b e s t h o u r s . So I t r y — w h e n I h a v e t h e c h o i c e — I t r y t o do my a c t i v i t e s a t t h a t t i m e — a c e r t a i n t i m e when I'm more a l e r t . M o r n i n g s I'm s o r t o f sluggish. The  number o f h o u r s o f w o r k p e r d a y  Some i n d i v i d u a l s f e l t hours  a day,  seemed t o be  crucial.  c a p a b l e o f w o r k i n g o n l y two  w h i l e o t h e r s w o r k e d an e i g h t h o u r  I t h i n k t h e r e s h o u l d be f l e x i b i l i t y and how many d a y s a week y o u w o r k . capable of working a f u l l d a y — f u l l  to three  day.  i n how many h o u r s Some d a y I m i g h t be week.  I t h i n k I c o u l d w o r k f o r two o r t h r e e h o u r s a t a t i m e . I t h i n k I c o u l d w o r k maybe f o u r h o u r s a d a y , a t a j o b f o r f i v e days a w e e k — n o t over t h a t . Having  some f l e x i b i l i t y  deemed n e c e s s a r y . to  One  i n t h e w o r k c o n d i t o n s was  p a r t i c i p a n t s a i d t h a t i t was  have a j o b where she c o u l d t a k e a break as  also  important  necessary.  I f y o u n e e d t o — y o u j u s t l a y down f o r a n h o u r — g o o u t and t a k e a w a l k f o r a h a l f h o u r . T e l l your boss you're t a k i n g a break. Some p a r t i c i p a n t s s a i d i t w o u l d be d e s i r a b l e t o h a v e a j o b w i t h some f l e x i b i l i t y  i n tasks.  On  "good" d a y s t h e  i n d i v i d u a l c o u l d do more d e m a n d i n g t a s k s and l e s s d a m a n d i n g t a s k s c o u l d be d o n e . found a j o b w i t h t h i s type of  One  on  "poor"  participant  days,  had  flexibility.  I have t h e a b i l i t y t o a d j u s t t h e day f a i r l y e a s i l y . If I'm h a v i n g a b a d d a y , I c a n v e r y e a s i l y s h i f t o f f s o m e t h i n g t h a t r e q u i r e s r e a l d e c i s i o n m a k i n g i n t o some k i n d o f m e n i a l , j u s t numbers k i n d o f t a s k .  141 Several  p a r t i c i p a n t s explained  job that provided  flexibility  t h a t i t w o u l d be  n i c e t o get  a  i n terms of t a k i n g time o f f  from work. I t h a s t o be f l e x i b l e b e c a u s e i f I j u s t g i v e up o r something l i k e t h a t — m a y b e j u s t walk out or s o m e t h i n g — maybe I ' l l come t o my s e n s e s and come b a c k a g a i n . So t h e r e h a s t o be f l e x i b i l i t y i n t h a t s e n s e . W i t h o u t w a r n i n g sometimes I j u s t have a problem. And t h e n t h e n e x t d a y I'm f i n e and w o r k j u s t a s w e l l a s anybody e l s e . So t h e r e i s t h a t f l e x i b i l i t y t h a t ' s important. E a c h m o n t h i s s o d i f f e r e n t . I d o n ' t know t h a t many other people with schizophrenia—except from c a s u a l c o n t a c t — s o I r e a l l y d o n ' t know how t h e i r e x p e r i e n c e s are. I p r e s u m e t h a t t h e y f l u c t u a t e and h a v e t h e i r g o o d t i m e s and t h e i r bad t i m e s . W i t h many j o b s y o u h a v e t o have a l l good t i m e s . You're not excused. You h a v e t h e f l u f o r a few d a y s b u t y o u c a n ' t t a k e t h e m o n t h o f f . I t ' s the f l e x i b i l i t y that i s important too. I'm a c t u a l l y f a i r l y g o o d a t w h a t I do when I'm w e l l . I do a g o o d j o b and e n j o y i t — b u t a s I s a y b e c a u s e — i t g o e s up and down e v e r y m o n t h . As  previously discussed,  to inform  most p a r t i c i p a n t s d i d not  t h e i r employers about the  illness.  p a r t i c i p a n t s i n d i c a t e d t h a t h a v i n g an u n d e r s t a n d i n g was  want  However some  e m p l o y e r who  was  important.  W e l l i t ' s o n l y been i n r e c e n t y e a r s t h a t I've had help— e m p l o y e r s u n d e r s t o o d t h e p r o b l e m and t h e y w o u l d be more flexible. J u s t k n o w i n g t h a t somebody knows y o u ' v e g o t a problem helps. L i k e I ' v e h a d h e l p i n t h e l a s t few years. Another aspect that p a r t i c i p a n t s considered a j o b was  t h e t y p e and  participants preferred stated,  when l o o k i n g  amount o f s u p e r v i s i o n . low  " I d o n ' t l i k e my  key  supervision.  b o s s l o o k i n g o v e r my  for  Most As  one  person  shoulder a l l  142 the  time."  A n o t h e r p e r s o n s a i d she e n j o y e d a j o b i n w h i c h  she had r e l a t i v e l y  little  supervision.  Nobody was h a n g i n g a r o u n d w a t c h i n g me, s o I w o u l d go f r o m b u i l d i n g t o b u i l d i n g — a n d t h e r e was a l o t o f freedom i n t h a t j o b . I j u s t had t o r e p o r t back once a m o n t h how I was d o i n g — t o make s u r e I w a s n ' t g e t t i n g behind. E v e n t h o u g h many p a r t i c i p a n t s w e r e u n c e r t a i n a b o u t employers about t h e i l l n e s s , to  w o r k w i t h e m p l o y e r s who  someone who  has  telling  a number o f p a r t i c i p a n t s  knew how  t o communicate  wanted  with  schizophrenia.  An e m p l o y e r m i g h t h a v e t o e x p l a i n s o m e t h i n g more t h a n once. He m i g h t h a v e t o e x p l a i n t h i n g s s e v e r a l t i m e s b e c a u s e my m i n d m i g h t be somewhere e l s e a n d I m i g h t m i s s t h e w h o l e t h i n g — g i v e a n e x p l a n a t i o n how t o do i t a n d I m i g h t m i s s t h e whole t h i n g — n o t p l u g g e d i n eh. I f he [ t h e e m p l o y e r ] c r i t i c i z e s someone w i t h s c h i z o p h r e n i a , he m i g h t d e v a s t a t e t h e p e r s o n by the wrong t h i n g o r something.  saying  I f y o u e m p l o y e d a s c h i z o p h r e n i c and y o u w e r e t o go i n t h e r e a n d s a y s o m e t h i n g t o h i m — h e m i g h t n o t be h e a r i n g what y o u ' r e s a y i n g . He m i g h t be i n t e r p r e t i n g i t incorrectly. T h e r e f o r e you have t o , i n i t i a l l y , b e f o r e y o u g e t i n t o any heavy d u t y w o r k — i s d e v e l o p a good r a p p o r t - w i t h t h a t p e r s o n s o t h a t t h e y know w h e n — l i k e i f y o u ' r e t h e b o s s a n d i f y o u came on r e a l l y s t r o n g , y o u ' d p r o b a b l y f r e a k t h e guy o u t . I f y o u came on w i s h y washy, h e ' d be j u s t a s f r e a k e d o u t , b e c a u s e a t b o t h e x t r e m e s y o u r n o t on s o l i d g r o u n d . Y o u , t h e b o s s , h a v e t o be v e r y c o n s i s t e n t , much more on s o l i d g r o u n d b e c a u s e he i s g o i n g t o use you as an a n c h o r i n h i s l i f e . He [ t h e p e r s o n w i t h s c h i z o p h r e n i a ] c a n ' t r e a d b e t w e e n the lines. And i f y o u [ t h e e m p l o y e r ] come i n a n d make some h a l f a s s e d j o k e a b o u t s o m e t h i n g , h e c o u l d i n t e r p r e t i t incorrectly. So t o e m p l o y a s c h i z o p h r e n i c , y o u h a v e t o be v e r y s t r a i g h t f o r w a r d — v e r y h o n e s t w i t h t h e p e r s o n b e c a u s e t h e y c a n n o t r e l y on t h e i r — w h a t y o u m i g h t c a l l p e r i f e r a l s e n s e s t o p i c k up s e c o n d m e a n i n g s on w h a t y o u m i g h t be s a y i n g .  143 Yet  another aspect  they  m e a n i n g f u l n e s s o f t h e work. w o r k t h a t was e n j o y a b l e  considered  was t h e  P a r t i c i p a n t s wanted t o o b t a i n  a n d o f p a r t i c u l a r i n t e r e s t t o them.  Y o u ' v e g o t t o h a v e s o m e t h i n g t h a t means s o m e t h i n g t o y o u e v e n t u a l l y down t h e r o a d . Another t h i n g i s a j o b t h a t you enjoy doing. Not j u s t there t o put i n e i g h t hours. A j o b t h a t a t t h e end o f t h e day y o u c a n s a y , " I d i d a good j o b . " I t ' s nice t o g e t a j o b t h a t you're i n t e r e s t e d i n — n o t j u s t w a l k i n t o a p l a c e — t a k e t h e j o b j u s t f o r t h e money- s o m e t h i n g t h a t y o u ' d be i n t e r e s t e d i n d o i n g . Although  i t was d i f f i c u l t  t o f i n d work t h a t p r o v i d e d t h e  r i g h t h o u r s , f l e x i b i l i t y , enjoyment and s u i t a b l e s u p e r v i s i o n , some p a r t i c i p a n t s e x p l a i n e d t h a t t h e y h a d , a t t i m e s ,  found  work w i t h s u i t a b l e w o r k i n g c o n d i t i o n s .  One p a r t i c i p a n t  e x p l a i n e d t h a t v o l u n t e e r work, a l t h o u g h  n o t p r o v i d i n g an  i n c o m e , was b e n e f i c i a l f o r i n c r e a s i n g s e l f - e s t e e m  and s e l f -  confidence. I s t a r t e d w i t h t h e v o l u n t e e r work w h i c h i s a l w a y s been e a s i e r — l e s s s t r e s s f u l — p a r t l y because I don't f e e l t r a p p e d i n i t and second o f a l l t h e hours a r e s h o r t e r . And a l s o v o l u n t e e r j o b s h a v e b e e n f a i r l y p l e a s a n t t o d o - s o t h e y ' v e a l w a y s b e e n e a s i e r o n me t h a n a j o b — e v e n a simple j o b . This p a r t i c i p a n t explained other b e n e f i t s of doing  volunteer  work. And a s a v o l u n t e e r I d i d n ' t h a v e t o g i v e a r e s u m e . I j u s t had t o w r i t e i n an a p p l i c a t i o n form. So I d i d n ' t h a v e t o g o i n t o my p a s t w o r k h i s t o r y . So t h a t s a v e d me a l o t o f e m b a r r a s s m e n t a b o u t w h a t I was d o i n g . So a f t e r 16 w e e k s I c a n s a y , " w e l l t h a t was g r e a t . I ' d l i k e t o c o n t i n u e o n i n a n o t h e r a s s i g n m e n t " o r , "no, I'm not f e e l i n g t o o great." I d o n ' t s a y t h a t — b u t i f I'm n o t f e e l i n g t o o g r e a t I m i g h t t a k e t h e n e x t few months off. So y o u ' v e g o t a l o t o f f l e x i b i l t y t o r e - e v a l u a t e  144 e v e r y few m o n t h s — w i t h o u t a c t u a l l y q u i t i n g . You have t h a t freedom t o change o r t o l e a v e w i t h o u t any problems a t t a c h e d t o t h a t , whereas y o u c o u l d n ' t i f y o u were working. Others found t h a t supportive employment o p p o r t u n i t y low  work p r o v i d e d  f o r them.  s t r e s s and t h e f l e x i b i l i t y  employers i n supportive  the best  I t provided  t h e hours, the  t h a t was d e s i r e d .  As w e l l ,  work programs were u n d e r s t a n d i n g and  helpful. I t h i n k s u p p o r t i v e work programs a r e a good i d e a . I seem t o b e d o i n g b e t t e r . I f I have an e p i s o d e then I c a n c o m e — t h e y ' l l u n d e r s t a n d — a n d t h e n I c a n come b a c k t o i t — b e g i v e n t h e j o b back a g a i n o r something. Right now I'm d o i n g q u i t e w e l l . I'm w o r k i n g q u i t e s o l i d l y . A n o t h e r p a r t i c i p a n t s t a t e d t h a t commissioned s a l e s were a good s o u r c e o f employment. The b e s t t h i n g I c a n t h i n k o f i s a c o m m i s s i o n e d s a l e s — w h e r e y o u ' r e o n y o u r own. T h a t ' s w h e r e I g a i n e d a l o t of c o n f i d e n c e — w a s i n telephone s a l e s — b e c a u s e I could do i t a t my s p e e d . I n summary, p a r t i c i p a n t s i d e n t i f i e d t h e i m p o r t a n c e o f f i n d i n g a j o b t h a t met t h e i n d i v i d u a l ' s n e e d s . work, m e n t a l and p h y s i c a l involvement, supervision,  flexibility,  i n t e r e s t and enjoyment were a s p e c t s o f w o r k i n g  conditions that p a r t i c i p a n t s considered work.  Hours o f  when l o o k i n g f o r  Some p a r t i c i p a n t s h a d f o u n d t h a t v o l u n t e e r  work,  s u p p o r t e d w o r k , a n d c o m m i s s i o n e d s a l e s w o r k met s e v e r a l o f their  criteria.  Maintaining;  Optimism  Towards t h e end o f t h e i n t e r v i e w s , p a r t i c u l a r l y t h e s e c o n d i n t e r v i e w s , p a r t i c i p a n t s made s t a t e m e n t s  that  145 i n d i c a t e d they f e l t  more p o s i t i v e a n d h o p e f u l a b o u t t h e  i l l n e s s a n d t h e w o r k e x p e r i e n c e s a n d t h i s o p t i m i s m was  seen  a s a way o f c o p i n g w i t h b o t h o f t h e s e e x p e r i e n c e s . T h e r e ' s a l w a y s some l i t t l e b u b b l e o f o p t i m i s m . I guess ' t h a t ' s t h e h e a l t h y p a r t . . . W h e r e I c a n go down l i k e a t r e e i n a s t o r m , b u t b o u n c e u p a g a i n . . . . S o i t — n o w I'm g e t t i n g a l i t t l e o l d e r I'm f e e l i n g more i n c o n t r o l — l i k e t h e t h i n g s I c a n do and c a n ' t do. J u s t b e c a u s e y o u q u i t u n i v e r s i t y d o e s n ' t mean y o u r l i f e i s f o r e v e r o v e r — a n d t o g e t v e r y v e r y d e p r e s s e d — t o know t h a t , y e s , t h e r e a r e p e o p l e who've b e e n t h r o u g h t h i s a n d y e s t h e y h a v e become w e l l a g a i n — a n d j u s t t a k e i t e a s y . . . J u s t g e t back on y o u r f e e t a g a i n a s soon as possible. And e n j o y t h e t i m e o f f y o u need t o r e c u p e r a t e — a n d don't r u s h i t . Take y o u r d o c t o r ' s a d v i c e . . . B u t t h e r e ' s some t y p e o f h o p e i n t h e f u t u r e . I g u e s s i t ' s l i k e somebody who i s on c r u t c h e s . T h e y know t h e y ' r e g o i n g t o f a l l o n c e i n a w h i l e , b u t t h e y k e e p g e t t i n g up a g a i n . J u s t t r y n o t t o g e t d i s c o u r a g e d a n d when y o u a r e d i s c o u r a g e d , l e a n o n o t h e r s f o r s u p p o r t — f a m i l y and your f r i e n d s and t h e y ' l l s a y keep going. B e c a u s e i t c a n be q u i t e d e p r e s s i n g — b u t y o u j u s t k e e p s a y i n g , I know I'm h e r e f o r a p u r p o s e . I know I h a v e v a l u e . Y o u h a v e t o be y o u r own g r e a t e s t s e l f esteem b o o s t e r — a n d j u s t t r y a g a i n — a n d a b i t o f a sense o f humor t o o . Y o u do h a v e t o s a y , w e l l — n o t t o t a k e e v e r y t h i n g as a l i f e and d e a t h d e c i s i o n . As t h e i n d i v i d u a l s u g g e s t e d  i n t h e a b o v e comment, s h e f e l t  s h e h a d t o be h e r own s e l f - e s t e e m b o o s t e r a n d g e n e r a t e p o s i t i v e t h i n k i n g and optimism. It  Others  shared t h i s o p i n i o n .  seemed t h a t i t was i m p o r t a n t t o g e n e r a t e p o s i t i v e  o n t h e i r own/ b e c a u s e o f t e n o t h e r s w o u l d n o t e v e n t h a t t h e p e r s o n needed encouragement.  thinking  realize  That i s , other  w o u l d s o m e t i m e s n o t u n d e r s t a n d w h a t t h e i n d i v i d u a l was experiencing.  people really  Some p a r t i c i p a n t s s a i d t h a t , b e c a u s e t h e y  d i d n ' t have an o b v i o u s p h y s i c a l d i s a b i l i t y , tell  some  t h a t t h e y were i l l and were  suffering.  people  couldn't  146 I r e g a i n e d my c o n f i d e n c e t h a t I c o u l d manage my r e a l i t y -manage my d r u g s — m a n a g e m y s e l f . . . T h a t i s a v e r y i m p o r t a n t l e s s o n — i s h a v i n g t h e c o n f i d e n c e you k n o w — y o u look f i n e , you're doing f i n e . T h e y h a v e no i d e a w h a t you're doing i n s i d e . You've g o t t o b u i l d i n e v e r y d a i l y a c t i v i t y a p o s i t i v e b u i l d i n g kind of a t t i t u d e . The  optimism  seemed t o p r o v i d e many p a r t i c i p a n t s w i t h t h e  a b i l i t y t o persevere i n the face of c o n f l i c t .  They  persevered through d i f f i c u l t periods of i l l n e s s  had  and  p e r s e v e r e d i n t h e i r e f f o r t s t o f i n d and k e e p a j o b . I g u e s s t h e p e o p l e who w o r k , r e a l l y w a n t t o w o r k . If you don't want t o work, you can f i n d l o t s o f e x c u s e s n o t to. L i k e t h a t perseverance i s r e a l l y important, because i f y o u f e e l t h e symptoms o f y o u r i l l n e s s — [ f o r ] some p e o p l e , i t c a n be r e a l l y s c a r r y and [ f o r ] o t h e r s i t ' s quite uncomfortable. And i f y o u d o n ' t p e r s e v e r e w i t h i t , a n d y o u j u s t g i v e up w i t h t h e f i r s t l i t t l e symptom, i t w i l l get worse. But i f you t e s t your l i m i t s a l l t h e time, y o u ' l l f i n d a place f o r yourself. You h a v e t o k e e p t r y i n g u n t i l y o u f i n d a j o b t h a t s u i t s y o u and w h e r e t h e y l i k e y o u a s w e l l . You m i g h t h a v e t o t r y a l l d i f f e r e n t j o b s — d i f f e r e n t l e v e l s of jobs, p a r t t i m e , f u l l t i m e — u n t i l you f i n d o u t what you can handle. And y o u h a v e t o be f l e x i b l e e n o u g h t o t r y i t . Maybe some o f u s t h a t a r e w o r k i n g a r e s u c e s s f u l b e c a u s e we p e r s e v e r e d . I t h i n k t h e r e ' s a l o t o f w e a r and t e a r i n d a i l y l i f e n o w a d a y s . The a v e r a g e p e r s o n h a s t o p e r s e v e r e t o o , t h r o u g h a heck o f a l o t . I f you have a m e n t a l i l l n e s s , y o u h a v e t o p e r s e v e r e e v e n more, and h o p e f u l l y g e t s t r o n g e r by i t . . . S o w h a t y o u s u r v i v e makes y o u s t r o n g e r as t h e y say. S e v e r a l i n d i v i d u a l s s a i d t h e y p r o g r e s s e d g r a d u a l l y as persevered  i n g e t t i n g work.  a s , " I t o o k i t i n s t e p s " and up t o s o m e t h i n g  they  P a r t i c i p a n t s made comments " a l l y o u c a n do  such  i s work y o u r  way  t h a t works."  I t ' s l i k e a stepping process. L i k e when y o u g e t s c h i z o p h r e n i a , y o u j u s t d o n ' t go i n t h e h o s p i t a l f o r s i x m o n t h s , come o u t and g e t t h e same j o b y o u h a d b e f o r e . I t d o e s n ' t w o r k t h a t way. You're so s h o t because o f  147 b e i n g o u t o f work f o r a l o n g t i m e — t h e m e d i c a t i o n you're t a k i n g — y o u r b r a i n i s mush a n d y o u h a v e t o g o b a c k up the ladder. T h e n y o u h a v e t o r e e s t a b l i s h y o u r own s e l f - c o n f i d e n c e i n w o r k i n g . A n d i t t o o k me, p r o b a b l y , a b o u t f i v e y e a r s , s l o w l y w o r k i n g b a c k up t h r o u g h — s t a r t o f f w i t h a j o b t h a t i s n ' t t o o demanding. P a r t o f t h e reason t h a t t h e s e p a r t i c i p a n t s were  positive  and m o t i v a t e d c o u l d stem f r o m t h e f a c t t h a t most o f them h a d worked p r i o r t o becoming i l l .  T h e y h a d some  skills,  c o n f i d e n c e , a n d a b i l i t i e s t h a t j u s t h a d t o be r e g a i n e d o r s h o r e d up. We h a d a l i f e b e f o r e s c h i z o p h r e n i a a n d we h a d some sucesses and you p e r s e v e r e . You h a d a l i f e b e f o r e s c h i z o p h r e n i a , s o y o u know w h a t i t ' s l i k e — r e l a t i o n s h i p s o r a j o b — a n d y o u go from t h e r e . I t h i n k t h e way I was b e f o r e i n f l u e n c e d my b e h a v i o r — b e c a u s e I was a l w a y s w o r k i n g . So y o u t h i n k i f y o u w e r e 15 when y o u g o t i l l , i t w o u l d have been d i f f e r e n t ? Y e s , b e c a u s e I w o u l d n ' t h a v e known how t o h o l d down a job. I w o u l d n ' t h a v e h a d i n c e n t i v e t o h o l d down a j o b . T h a t ' s what a l o t o f t h o s e guys a t [ t h e c l u b h o u s e ] - — t h a t ' s t h e i r problem. T h a t ' s why [ t h e c l u b h o u s e ] i s t h e r e , b a s i c a l l y , t o work f o r them...so I t h i n k what you've d e v e l o p e d — w h a t you had b e f o r e hand i s i m p o r t a n t . I was l u c k y I g o t s i c k when I was 25 i n s t e a d o f when I was 15 b e c a u s e — l i k e I w o r k e d f r o m t h e t i m e I was 1 6 — l i k e p a r t t i m e j o b s a f t e r s c h o o l and I went t o u n i v e r s i t y u n t i l I was 2 2 . One p a r t i c i p a n t d e s c r i b e d some f r i e n d s who h a d become i l l w i t h s c h i z o p h r e n i a when t h e y w e r e i n t h e i r t e e n s . e x p l a i n e d t h a t he t h o u g h t to had  i t was much more d i f f i c u l t f o r them  work because t h e y d i d n o t have j o b s k i l l s never  He  and because  experienced t h e f e e l i n g o f being independant  e a r n i n g an income p r e v i o u s t o becoming  ill.  they  and  148 I f y o u h a d somebody l i k e m y s e l f who h a s s c h i z o p h r e n i a , who k n o w s — o r h a s b e e n down t h e p a t h t o g e t b a c k t o w h e r e he w a s — w h e r e a s , t h e s e p e o p l e h a v e g o t t o go w h e r e t h e y ' v e never been b e f o r e , so t o speak. P a r t i c i p a n t s s a i d t h a t t h e t y p e o f p e r s o n t h e y were p r i o r t o becoming i l l  i n f l u e n c e d t h e way t h e y d e a l t w i t h t h e  and w i t h w o r k . become i l l  A s one p e r s o n s a i d ,  i s very important."  illness  "What y o u a r e b e f o r e y o u  O t h e r p e o p l e made s i m i l a r  comments. I ' v e g o t a l o t o f m o t i v a t i o n anyway. I'm a l w a y s t r y i n g something. I a l w a y s was t h a t way. My p a r e n t s s o r t o f b u i l t i t i n t o m e — t h e work e t h i c and t r y i n g and a l l t h a t stuff. So t h e way I was b e f o r e d i d i n f l u e n c e a l o t t h e way r e s p o n d e d t o my i l l n e s s . A n d I was s t i l l t h e same person r e a l l y . In  I  summary, p a r t i c i p a n t s s a i d t h a t i t was i m p o r t a n t t o  be o p t i m i s t i c a n d p e r s e v e r e t h r o u g h d i f f i c u l t i l l n e s s  and  work s i t u a t i o n s .  As s c h i z o p h r e n i a i s an i l l n e s s t h a t i s n o t  r e a d i l y apparent,  p a r t i c i p a n t s found t h a t people d i d not  r e a l i z e t h e y were " s u f f e r i n g .  T h e y f e l t t h e y h a d t o be  own b e s t s e l f - e s t e e m b o o s t e r s . thought  their  Several said that they  t h e y h a d managed t o d e a l w i t h t h e i l l n e s s  a n d be  m o t i v a t e d t o w o r k b e c a u s e o f who t h e y w e r e a n d w h a t t h e y h a d accomplished p r i o r t o becoming i l l . mastered c e r t a i n s k i l l s  and h a v i n g d e v e l o p e d  personality characteristics, responded t o being i l l In  They f e l t t h a t h a v i n g certain  i n f l u e n c e d t h e way  they  and t o work.  conclusion, the p a r t i c i p a n t s ' descriptions of the  coping experience reveal the following findings.  Many  149 participants explained was  a valued  having and  goal.  t h a t self-management of the  While being  c o n t r o l over medications,  d i e t i m p r o v e d h e a l t h and  a b l e t o work.  sleep, rest,  increased  Each p e r s o n had  these f a c t o r s .  s t r e s s f u l and  t h e i r own  a b i l i t y t o o b t a i n and  r e t a i n work.  important  having  reality  t h e a b i l i t y t o work  step  The  s u i t a b l e employment.  f o r m o f h o u s i n g and  low p a y i n g  jobs.  s a i d t h a t f i n a n c i a l s u p p o r t was  the  community provide  to learn l i f e  and  F i n a n c i a l support i n  i n c o m e a s s i s t a n c e was  v a l u a b l e by many b e c a u s e i t i n c r e a s e d at less stressful,  the  s e r v i c e s were seen t o  u n c o n d i t i o n a l acceptance, the opportunity and  and  i n improving  m a j o r i t y of p a r t i c i p a n t s considered  s e r v i c e s t o be v a l u a b l e .  being  being  Many s a i d t h a t r e g a i n i n g s o c i a l s k i l l s an  the  time  controlling  A number o f p a r t i c i p a n t s s a i d t h a t  s o c i a l c o m p e t a n c e was  job s k i l l s ,  leisure  ways o f  o r i e n t a t i o n , t h e o b t a i n m e n t o f j o b s , and  The  complicated,  the chance of  s o c i a l r e l a t i o n s h i p s aided the maintenance of  with people.  illness  considered  the opportunity  t o work  Several p a r t i c i p a n t s  s i g n i f i c a n t f o r mental w e l l  because i t decreased f i n a n c i a l  worry.  Most i n d i v i d u a l s i n d i c a t e d t h a t c a r e f u l l y s e l e c t i n g working c o n d i t i o n s improved the chances of being maintain important  employment. to consider  Participants explained the  able  to  that i t  was  j o b s m e n t a l , p h y s i c a l and  social  r e q u i r e m n e t s , h o u r s of work, f l e x i b i l i t y  o f w o r k and  time  off,  enjoyment.  Because  type of supervsion  and  i n t e r e s t and  150 each p e r s o n had unique needs f o r hours o f work, t y p e o f s u p e r v i s i o n a n d s o o n , i t was c o n s i d e r e d i m p o r t a n t t o f i n d job  uniquely t a i l o r e d f o r the individaul.  a  V o l u n t e e r work,  s u p p o r t e d w o r k , a n d c o m m i s i o n e d s a l e s w e r e s e e n b y a number of  p e o p l e t o be u s e f u l s o u r c e s o f w o r k .  Several participants  s a i d t h a t t h e s e t y p e s o f j o b s i n c r e a s e d s e l f - e s t e e m and confidence while providing f l e x i b i l i t y work, t y p e o f s u p e r v i s i o n and work  self-  i n terms of hours  of  conditions.  A number o f p e o p l e s a i d t h a t m a i n t a i n i n g a p o s i t i v e o u t l o o k and p e r s e v e r i n g t h r o u g h d i f f i c u l t t i m e s necessary coping strategies.  were  Progressing gradually i n  o b t a i n i n g e m p l o y m e n t g o a l s was a d v i s e d b y s e v e r a l The j o b s k i l l s ,  life  people.  e x p e r i e n c e , and p e r s o n a l i t y  c h a r a c t e r i s t i c s a c q u i r e d p r i o r t o i l l n e s s o n s e t were seen t o i n f l u e n c e responses  t o i l l n e s s and work. Summary  The p r e s e n t a t i o n o f t h e p a r t i c i p a n t s  1  accounts r e v e a l s  t h a t t h r e e t h r e a d s were i n t e r w o v e n t h r o u g h o u t The i n d i v i d u a l ' s u n i q u e  their  experience with i l l n e s s ,  accounts.  the social  i n f l u e n c e s s u c h as s t i g m a and community s u p p o r t , and t h e l o n g - t e r m n a t u r e o f t h e i l l n e s s w e r e t h e m e s common t o e a c h o f the three areas of experience. each o f t h e s e w i l l The U n i q u e  be  To s u m m a r i z e t h e a c c o u n t s ,  addressed.  Individual  Participants described the characteristic associated with schizophrenia.  symptoms  That i s , they d e s c r i b e d  151 changes  i n t h i n k i n g , p e r c e i v i n g , r e l a t i n g and b e h a v i n g , as  w e l l as changes  i n self-confidence,  and need f o r s l e e p . of  t h e c h a n g e was  s t r e s s t o l e r a n c e , mood  However, f o r e a c h p a r t i c i p a n t t h e n a t u r e  unique.  F o r example,  a l l participants  e x p e r i e n c e d p e r c e p t u a l c h a n g e s , b u t some h a d d i f f i c u l t y  with  i n c r e a s e d s e n s i t i v i t y t o sound and o t h e r s had d i f f i c u l t y visual acuity. s u b j e c t i v e way.  I n a d d i t i o n e a c h symptom was One  her  b u t s h e was  experienced i n a  person with increased s e n s i t i v i t y  sound found i t v e r y t r o u b l e s o m e .  with  to  Another s a i d i t bothered  able to ignore i t .  Each p a r t i c i p a n t ' s work  e x p e r i e n c e s were a f f e c t e d by t h e i r u n i q u e e x p e r i e n c e w i t h t h e illness.  F o r example,  t h o s e who  had d i f f i c u l t y  with  s e n s i t i v i t y t o sound found i t p a r t i c u l a r l y t r o u b l e s o m e t o work i n a n o i s e y environment.  Others found t h a t the  p r o b l e m s made w o r k d i f f i c u l t .  Many o t h e r symptoms w e r e  e x p e r i e n c e d i n u n i q u e i n d i v i d u a l ways e a c h  vision  individual.  E v e r y o n e n o t i c e d p r o b l e m s i n r e l a t i n g t o p e o p l e , b u t f o r some the  m a j o r c a u s e o f t h e p r o b l e m was  the  m a j o r p r o b l e m was  sensory changes. sometimes  p a r a n o i a and f o r o t h e r s  l a c k o f c o n f i d e n c e b r o u g h t on  T h o s e who  experienced paranoia found  Those  lacked confidence found i t d i f f i c u l t t o accept a job  i n v o l v i n g a l o t of contact with people.  So i n many ways t h e  e x p e r i e n c e o f o b t a i n i n g and r e t a i n i n g w o r k was the  that  t h e y w o u l d become a n g r y w i t h c o - w o r k e r s o r  e m p l o y e r s and would e v e n t u a l l y have t o q u i t t h e j o b . who  by  influenced  i n d i v i d u a l ' s u n i q u e e x p e r i e n c e o f t h e symptoms.  by  152 Another aspect the course episodes,  t h a t was d i f f e r e n t f o r e a c h p e r s o n was  of i l l n e s s ,  i n c l u d i n g s e v e r i t y a n d number o f a c u t e  and t h e o v e r a l l p a t t e r n o f i l l n e s s .  p a r t i c i p a n t s had experienced and  many a c u t e  episodes  These i n d i v i d u a l s had l o n g p e r i o d s o f unemployment.  Other p a r t i c i p a n t s had fewer acute continue  few y e a r s been i l l  episodes  working with only short periods  terms o f t h e p a t t e r n of i l l n e s s ,  a n d managed t o  away f r o m w o r k .  some h a d b e e n v e r y  a n d t h e n r e m a i n e d w e l l f o r many y e a r s . f o r many y e a r s  The work e x p e r i e n c e  illness  i n that periods  In fora  Others had felt  was i n f l u e n c e d b y t h e p a t t e r n o f  o f f e e l i n g w e l l seemed t o be r e l a t e d  more s u c c e s s f u l employment  experiences.  C o p i n g e f f o r t s were a n o t h e r a s p e c t each i n d i v i d u a l .  ill  and had, f o r o n l y a few y e a r s ,  well.  the  psychotic  h a d s p e n t l o n g p e r i o d s o f t i m e i n h o s p i t a l and community  care.  to  Some  t h a t was u n i q u e f o r  Awareness and u s e o f e f f o r t s t o cope w i t h  i l l n e s s v a r i e d from person t o person.  Awareness o f t h e  f a c t o r s a f f e c t i n g t h e i l l n e s s , and e f f o r t s t o cope w i t h t h e i l l n e s s were i d e n t i f i e d as b e i n g h e l p f u l i n m a i n t a i n i n g health.  M a i n t a i n i n g h e a l t h improved t h e chances o f  m a i n t a i n i n g work. understanding  So when i n d i v i d u a l s h a d g a i n e d  of their  a good  i l l n e s s a n d h a d l e a r n e d how t o c o p e  w i t h i t , t h e y w e r e p o t e n t i a l l y more s u c c e s s f u l w i t h and  r e t a i n i n g work.  obtaining  F o r e x a m p l e p a r t i c i p a n t s who h a d  developed i n s i g h t i n t o the f a c t o r s that a f f e c t e d t h e i r i l l n e s s w e r e more d i s c e r n i n g when i t came t o j o b h u n t i n g .  153  T h e y w o u l d c h o s e j o b s t h a t met  t h e i r n e e d s and t h u s w o u l d  have a g r e a t e r chance of r e t a i n i n g the j o b . is  t h a t p a r t i c i p a n t s who  Another  example  i d e n t i f i e d s p e c i f i c w a y s t o manage  t h e i r m e d i c a t i o n and r e d u c e  s t r e s s found t h e y c o u l d cope  b e t t e r w i t h w o r k and h a d a b e t t e r c h a n c e o f m a i n t a i n i n g w o r k . Other  a s p e c t s t h a t were unique  p r e v i o u s l i f e and work e x p e r i e n c e s .  f o r each p e r s o n were  their  Many p a r t i c i p a n t s  b e l i e v e d t h a t t h e e x p e r i e n c e s t h e y ' d had p r i o r t o becoming ill  a f f e c t e d t h e i r m o t i v a t i o n t o work, t h e i r j o b h u n t i n g  skills,  t h e i r a b i l i t y t o d e a l w i t h day t o d a y w o r k , and  perseverance  i n the j o b market.  Having developed  their  good work  h a b i t s and/or h a v i n g l i v e d i n d e p e n d a n t l y p r i o r t o becoming ill  were viewed  a s b e i n g r e l a t e d t o s u c c e s s i n o b t a i n i n g and  r e t a i n i n g work. Another  a s p e c t t h a t was  unique  f o r e a c h p e r s o n was  number o f s o c i a l s u p p o r t s and t h e i n d i v i d u a l ' s s o c i a l  the skills.  These i n f l u e n c e d t h e work e x p e r i e n c e i n t h e f o l l o w i n g ways. P a r t i c i p a n t s who  had g a i n e d o r r e g a i n e d s o c i a l s k i l l s  and  had  a s u p p o r t i v e s o c i a l n e t w o r k s a i d t h e y w e r e more a b l e t o d e a l w i t h work s i t u a t i o n s , p a r t i c u l a r l y t h o s e i n v o l v i n g  people.  S e v e r a l p a r t i c i p a n t s s a i d t h e y had d i f i c u l t y w o r k i n g p e r i o d s when t h e y w e r e s o c i a l l y u n s k i l l e d . p a r t i c i p a n t s who  during  Those  c o n t i n u e d t o have d i f f i c u l t y w i t h  social  r e a l t i o n s h i p s expressed concern about working w i t h people. T h o s e who  had r e g a i n e d t h e i r c o n f i d e n c e i n i n t e r a c t i n g w i t h  p e o p l e were a b l e t o a c c e p t j o b s i n v o l v i n g i n t e r a c t i o n w i t h  154 people. and  Thus t h e i n d i v i d u a l s '  experience with s o c i a l  s o c i a l r e l a t i o n s h i p s was r e f l e c t e d  o b t a i n i n g and r e t a i n i n g work. i s apparent  i n t h e i r experience i n  From t h e a b o v e d i s c u s s i o n , i t  t h a t a number o f a s p e c t s w e r e e x p e r i e n c e d i n a  u n i q u e way b y e a c h p a r t i c i p a n t . w i t h symptoms,  T h e i r unique  course of i l l n e s s ,  o b t a i n i n g and r e t a i n i n g work. i s apparent  experiences  c o p i n g e f f o r t s and s o c i a l  relationships influenced the individuals'  it  skills  experience i n  When c o n s i d e r e d i n t h i s way,  t h a t t h e e x p e r i e n c e o f o b t a i n i n g and r e t a i n i n g  work i s b e s t viewed w i t h i n t h e i n d i v i d u a l c o n t e x t . The S o c i a l I n f l u e n c e s Throughout t h e accounts, t h e impact o f s o c i a l on t h e p a r t i c i p a n t s '  e x p e r i e n c e s was e v i d e n t .  influences  Most  p a r t i c i p a n t s spoke o f t h e s o c i a l s t i g m a a t t a c h e d t o t h e word schizophrenia.  They s a i d t h e word h a d n e g a t i v e c o n n o t a t i o n s  and t h e y f e l t t h e y h a d been " l a b e l l e d . "  Many  expressed  c o n c e r n and f r u s t r a t i o n w i t h t h e myths and m i s c o n c e p t i o n s surrounding the i l l n e s s .  They t h o u g h t t h e p u b l i c a s s o c i a t e d  s c h i z o p h r e n i a w i t h dangerous b e h a v i o r . to  Participants  r e c e i v e n e g a t i v e r e s p o n s e s when t h e y t o l d p e o p l e  their diagnosis.  expected about  S e v e r a l p a r t i c i p a n t s s a i d they would  lose  f r i e n d s a n d w o u l d be t r e a t e d i n a s t e r e o t y p i c a l manner.  As a  r e s u l t many s a i d ythey d i d n o t w a n t t o i n f o r m p e o p l e a b o u t t h e illness.  These p e r s p e c t i v e s o f s o c i a l s t i g m a and t h e  e x p e c t a t i o n s about peoples' reponses experience.  influenced their  When l o o k i n g f o r w o r k , many p a r t i c i p a n t s  work avoided  155 d i s c u s s i o n o f s c h i z o p h r e n i a by a p p l y i n g f o r j o b s i n f o r m a l a p p l i c a t i o n p r o c e s s e s , by f i l l i n g  i n t h e gaps i n  t h e i r resume, and by l e a v i n g b l a n k o r a l t e r i n g the medical application.  with  i n f o r m a t i o n on  Many p a r t i c i p a n t s d i d n o t d i s c l o s e  t h e i r i l l n e s s d u r i n g j o b i n t e r v i e w s because they thought they w o u l d n ' t be h i r e d .  They b e l i e v e d t h e employer w o u l d r e s p o n d  t o t h e m i n t h e s t e r e o t y p i c a l y n e g a t i v e mannner.  They  b e l i e v e d t h e e m p l o y e r w o u l d assume t h a t t h e y c o u l d n ' t w o r k s a f e l y and r e s p o n s i b l y and w o u l d n ' t h i r e  them.  A number o f p a r t i c i p a n t s s a i d t h a t , b e c a u s e t h e y d i d n o t w a n t e m p l o y e r s t o know a b o u t t h e i l l n e s s , be " n o r m a l " .  they pretended t o  M a i n t a i n i n g t h e f a c a d e s o m e t i m e s made t h e w o r k  environment uncomfortable.  P a r t i c i p a n t s were  self-conscious,  and t h e y w o r r i e d t h a t t h e i r j o b p e r f o r m a n c e w o u l d them.  They w o r r i e d about b e i n g " f o u n d o u t . "  betray  They had t o  d e a l w i t h symptoms o r w o r k p r o b l e m s b r o u g h t o n by t h e illness,  i n isolation.  T h e s e c o n c e r n s made w o r k more  s t r e s s f u l l a n d some p a r t i c i p a n t s q u i t w o r k due t o t h e s t r e s s . Some e m p l o y e r s e v e n t u a l l y l e a r n e d a b o u t t h e i l l n e s s ; w h i l e p a r t i c i p a n t s expected a n e g a t i v e response, t h e employer was o f t e n s u p p o r t i v e o r a t l e a s t u n c o n c e r n e d .  I t seemed  that  s o c i a l s t i g m a h a d l e s s e f f e c t when t h e e m p l o y e r h a d come t o know t h e p e r s o n , a n d t h e p e r s o n h a d d e v e l o p e d a g o o d w o r k record.  N o n e t h e l e s s s , because o f t h e b e l i e f t h a t t h e y would  be t r e a t e d  " d i f f e r e n t l y , " some p a r t i c i p a n t s r e m a i n e d  about d i s c u s s i n g t h e i r i l l n e s s w i t h co-workers.  One  cautious  156 p a r t i c i p a n t used medical terminology rather than schizophrenia.  and d i s c u s s e d  "dopamine"  A n o t h e r u s e d humor a s a way o f  d e a l i n g w i t h people's concerns about t h e d i a g n o s i s .  From t h e  participants'  accounts, i t i s c l e a r that the s o c i a l stigma of  schizophrenia  had an i m p a c t on t h e i r w o r k - r e l a t e d  behavior.  The s e c o n d s o c i a l a s p e c t t h a t i n f l u e n c e d t h e participants'  e x p e r i e n c e was t h e d e g r e e o f c o m m u n i t y  Participants described illnesss,  how c o m m u n i t y s u p p o r t s a f f e c t e d  work and c o p i n g  individuals  explained  experience.  that various  them t o l e a r n about t h e i l l n e s s , cope t h e i l l n e s s ,  their  A number o f community s u p p o r t s  helped  h e l p e d t h e m t o l e a r n how t o  a n d h e l p e d them t o f i n d a n d m a i n t a i n  I n r e f l e c t i n g on t h e i r p a s t and c u r r e n t  I n terms o f o b t a i n i n g work,  p a r t i c i p a n t s f o u n d t h a t community s e r v i c e s a i d e d f i n d i n g s u i t a b l e work.  with  the value  several them i n  T h o s e who u s e d j o b - f i n d i n g c l u b s  community m e n t a l h e a l t h s e r v i c e s s a i d t h a t t h e y c o u l d e a s i l y f i n d w o r k t h a t was s u i t a b l e . participant explained  jobs.  experience  community s u p p o r t , p a r t i c i p a n t s g e n e r a l l y d e s c r i b e d of these s e r v i c e s .  support.  that before  and  more  F o r e x a m p l e , one  he w e n t t o a c o m m u n i t y  s u p p o r t p r o g r a m he c o u l d n e v e r f i n d a p a r t - t i m e  job with the  s p e c i f i c w o r k c o n d i t i o n s he d e s i r e d .  support  Community  also  a f f e c t e d t h e e x p e r i e n c e o f o b t a i n i n g work as i t i n f l u e n c e d some i n d i v i d u a l s ' m o t i v a t i o n  t o work.  That i s , according  s e v e r a l p a r t i c i p a n t s , t h e s u p p o r t e d h o u s i n g and  financial  to  157  a s s i s t a n c e i n c r e a s e d m o t i v a t i o n t o work and i n c r e a s e d t h e o p p o r t u n i t y t o f i n d s u i t a b l e work. T h o s e who a t t e n d e d  day programs and o t h e r  programs s a i d t h a t t h e programs helped  them t o r e t a i n  Several p a r t i c i p a n t s explained that through s e r v i c e s they had learned l i f e  particular job skills  work.  community  and j o b s k i l l s  t h e m t o be a b l e t o c o p e w i t h w o r k .  rehabilitaion  that  helped  Some h a d l e a r n e d  that increased t h e i r employability.  Many p a r i c i p a n t s a t t r i b u t e d t h e i r i m p r o v e d s o c i a l s k i l l s a n d t h e i r acquired  s o c i a l n e t w o r k t o t h e community s e r v i c e s .  mentioned p r e v i o u s l y , having chance o f being support  a b l e t o work.  social skills  improved t h e  T h u s , i n t h i s way, c o m m u n i t y  influenced their a b i l i t y t o retain  work.  Some p a r t i c i p a n t s h a d l e a r n e d more a b o u t t h e i r and  medication  As  u s e i n community programs.  illness  As mentioned, they  i n d i c a t e d t h a t k n o w i n g how t o manage m e d i c a t i o n s  increased  t h e chances o f m a i n t a i n i n g h e a l t h and t h u s i n c r e a s e d t h e chance o f working.  So a g a i n , c o m m u n i t y s u p p o r t s  t h e work e x p e r i e n c e . provided  A d d i t i o n a l l y , some c o m m u n i t y  leisure activities,  t h e i r confidence acceptance.  services  participants increase  and p r o v i d e d  unconditional  f a c t o r s influenced t h e person's  them, i n d i r e c t l y ,  In terms o f t h e types differences.  helped  and s e l f - e s t e e m ,  A l l of these  h e a l t h and h e l p e d  influenced  to retain  of supports  work.  u s e d , t h e r e were  some  S e v e r a l p a r t i c i p a n t s made u s e o f c o m m u n i t y  services a v a i l a b l e t o the general public.  Most had, a t  158 v a r i o u s t i m e s , made u s e o f c o m m u n i t y m e n t a l h e a l t h p r o g r a m s . A s m a l l e r number d i s c u s s e d t h e i r initiated  i n v o l v e m e n t w i t h consumer  s e r v i c e s s u c h a s F.O.S. a n d p e e r s u p p o r t  groups.  So w h i l e p a r t i c i p a n t s s a i d t h a t c o m m u n i t y s u p p o r t s w e r e h e l p f u l , t h e i r experiences varied according t o the type of supports used  and t h e degree t o which t h e s u p p o r t s were  T h i s was s i g n i f i c a n t t o n o t e b e c a u s e i n d i v i d u a l s '  used.  experiences  w i t h o b t a i n i n g a n d r e t a i n i n g w o r k seemed t o b e i n f l u e n c e d b y t h e t y p e a n d amount o f s u p p o r t s  used.  Based on t h e p a r t i c i p a n t s ' a c c o u n t s , community s u p p o r t  i t w o u l d seem t h a t  and s o c i a l stigma had a g r e a t d e a l o f  i n f l u e n c e on t h e i r work e x p e r i e n c e . order t o gain a f u l l  I t i s apparent  that, i n  appreciation of the experience of  o b t a i n i n g and r e t a i n i n g work, i t i s i m p e r a t i v e t o u n d e r s t a n d the impact  of the s o c i a l context. The  Long-term Nature  of the Illness  Throughout t h e i r accounts p a r t i c i p a n t s d e s c r i b e d t h e e f f e c t of having a long-term i l l n e s s .  They d e s c r i b e d t h e  ongoing  symptoms, t h e l e n g t h y c o u r s e o f t h e i l l n e s s ,  ongoing  need f o r m e d i c a t i o n and s u p p o r t .  Participants  discussed the unpredictable nature of the i l l n e s s . did  t h e y have t o l i v e w i t h ongoing  an i l l n e s s  the i l l n e s s  also  Not o n l y  symptoms b u t t h e y h a d t o  l i v e w i t h t h e p o t e n t i a l reoccurrence of acute Having  and t h e  episodes.  w i t h no c u r e meant h a v i n g t o a c c c o m o d a t e  i n their  life.  159 The l o n g - t e r m n a t u r e o f t h e i l l n e s s  dramatically  a f f e c t e d t h e p a r t i c i p a n t s ' work e x p e r i e n c e s . e x p e r i e n c i n g an a c u t e i l l n e s s t h a t b r i e f l y  Rather  than  i n t e r r u p t e d work,  t h e s e p a r t i c i p a n t s e x p e r i e n c e d o n g o i n g symptoms a n d e p i s o d e s t h a t p u n c t u a t e d t h e i r work e x p e r i e n c e o v e r a l o n g p e r i o d o f time.  T h i s o n g o i n g s t r u g g l e t o work l e a d t o f e e l i n g s o f  d i s c o u r a g e m e n t and emabarrassment, and r e s u l t e d i n d e c r e a s e d self-esteem.  Because of t h e continuous u n p r e d i c t a b l e  e p i s o d e s , some p a r t i c i p a n t s h a d l o s t j o b s a n d h a d e x p e r i e n c e d p e r i o d s o f unemployment.  F o r some, s t a r t i n g a n d s t o p p i n g  j o b s , due t o t h e o n g o i n g  symptoms, r e s u l t e d i n f e e l i n g s o f  d i s c o u r a g m e n t and f r u s t r a t i o n .  One p e r s o n was a n x i o u s a b o u t  s t a r t i n g another j o b because another acute might occur.  episode  She b e l i e v e d t h a t s h e w o u l d h a v e t o r e l i v e t h e  disappointment of q u i t t i n g y e t another j o b .  As t h e y e a r s  w e n t o n , a number o f p a r t i c i p a n t s f o u n d t h a t j o b a v a i l a b i l i t y and employment a m b i t i o n s changed.  These changes r e s u l t e d i n  some p a r t i c i p a n t s f e e l i n g d i s a p p o i n t e d . H a v i n g a l o n g - t e r m i l l n e s s a f f e c t e d t h e i d e n t i t y o f many participants.  T h e y saw t h e m s e l v e s  a b u r d e n on s o c i e t y .  a s " s i c k p e r s o n s " who  In addition, having a chronic i l l n e s s  t h a t d i s r u p t e d work f o r l o n g p e r i o d s o f t i m e participants'  were  affected  f i n a n c i a l s t a t u s . Both o f t h e above a f f e c t e d  the individual's self-esteem.  Changes i n i d e n t i t y ,  financial  s t a t u s and s e l f - e s t e e m i n f l u e n c e d t h e meaning o f work f o r many p a r t i c i p a n t s . Many p a r t i c i p a n t s s a i d t h a t w o r k  was  160 meaningful  f o r changing i d e n t i t y from t h a t o f a s i c k  to a w e l l person,  person  f o r improving f i n a n c i a l s t a t u s and f o r  increasing self-esteem. o f work, t h e l o n g - t e r m  Because o f i t s e f f e c t on t h e meaning illness  indirectly affected the  p a r t i c i p a n t s ' m o t i v a t i o n t o work.  I n o t h e r words, most  p a r t i c i p a n t s w e r e v e r y m o t i v a t e d t o w o r k a n d some o f t h a t m o t i v a t i o n c o u l d be a t t r i b u t e d t o t h e need t o i m p r o v e identity,  f i n a n c e s and s e l f - e s t e e m t h a t were a f f e c t e d by  long-term  illness.  A n o t h e r outcome o f h a v i n g a l o n g - t e r m p a r t i c i p a n t s e v e n t u a l l y developed illness  i ntheir  lives.  i l l n e s s was t h a t  ways t o a c c o m o d a t e t h e  From t h e p a r t i c i p a n t s '  accounts, i t  seemed t h a t many h a d d e c i d e d t o l e a r n a b o u t t h e i l l n e s s a n d t o t a k e c o n t r o l o f managing t h e i l l n e s s . developed work.  The m a j o r i t y h a d  ways t o cope w i t h t h e i l l n e s s and t o cope w i t h  Some h a d d e v e l o p e d  an o p t i m i s t i c a t t i t u d e and had  d e c i d e d t o p e r s e v e r e w i t h t h e i r g o a l s f o r employment. From t h e p a r t i c i p a n t s ' a c c o u n t s , schizophrenia, as a long-term  illness,  i t seems t h a t dramatically affects  t h e e x p e r i e n c e o f o b t a i n i n g and r e t a i n i n g work.  For this  r e a s o n t h e e x p e r i e n c e o f o b t a i n i n g and r e t a i n i n g work be v i e w e d w i t h i n t h e c o n t e x t o f l o n g - t e r m  illness.  T h i s chapter has presented t h e accounts p a r t i c i p a n t s i n t h i s study.  Their accounts  should  of the addressed  areas of experience; t h e experience of being i l l , r e l a t e d e x p e r i e n c e , and t h e c o p i n g e x p e r i e n c e .  three  t h e work-  T h r e e themes  161  were i n t e r w o v e n throughout individual, of  the social  the i l l n e s s .  and  unique  i n f l u e n c e s , and t h e l o n g - t e r m  nature  Because o f t h e i n f l u e n c e o f t h e s e t h r e e  aspects, i t i s apparent retaining  these experiences;^the  t h a t t h e e x p e r i e n c e o f o b t a i n i n g and  work i s b e s t viewed w i t h i n t h e i n d i v i d u a l ,  long-term i l l n e s s contexts.  social,  162 Chapter  5  Discussion of Findings Introduction As  j u s t d i s c u s s e d , each p a r t i c i p a n t ' s e x p e r i e n c e w i t h  o b t a i n i n g a n d r e t a i n i n g w o r k was i n f l u e n c e d b y h i s / h e r individual  e x p e r i e n c e w i t h symptoms, c o u r s e o f i l l n e s s ,  coping e f f o r t s , life  social skills,  experience.  s o c i a l network,  and  premorbid  I n a d d i t i o n , each p a r t i c i p a n t ' s work  e x p e r i e n c e was i n f l u e n c e d b y t h e f a c t t h a t h e / s h e l i v e d w i t h a long-term i l l n e s s and e x p e r i e n c e d v a r y i n g degrees stigma and s o c i a l support. of  the individual,  I t appears  of social  t h a t an u n d e r s t a n d i n g  s o c i a l and long-term i l l n e s s c o n t e x t s  p r o v i d e s a u s e f u l framework f o r u n d e r s t a n d i n g t h e e x p e r i e n c e of  o b t a i n i n g and r e t a i n i n g work w i t h s c h i z o p h r e n i a .  chapter discusses the individual, i l l n e s s contexts i n relation  The  Individual The  s o c i a l and long-term  t o t h e l i t e r a t u r e addressed i n  c h a p t e r 2, a s w e l l a s a d d i t i o n a l The  This  literature.  Individual  Context  Experience  a c c o u n t s o f t h e s e i n d i v i d u a l s a n d t h e many  a u t o b i o g r a p h i c a l accounts  such as North  (1987),  Sechehaye  ( 1 9 5 1 ) , S t e f a n (1966) a n d o t h e r s make i t c l e a r t h a t  each  person w i t h s c h i z o p h r e n i a experiences t h e i l l n e s s i n a unique way.  F o r each p a r t i c i p a n t i n t h i s study, t h e n a t u r e o f t h e  symptoms, c o u r s e o f i l l n e s s , c o p i n g e f f o r t s , and p r e m o r b i d  e x p e r i e n c e s were u n i q u e .  social  skills  Often though, i t  163 appears t h a t p r o f e s s i o n a l medical focuses  and  nursing  on t h e c h a r a c t e r i s t i c f e a t u r e s o f t h e  offers l i t t l e  literature illness  d i s c u s s i o n of the s u b j e c t i v e nature  symptoms o r t h e u n i q u e e x p r e s s i o n client.  As W a l s h  mentally  i l l  of the  (1985) w r i t e s , "we  together  a s one  illness  may  As M c G l a s h e n and  be common, b u t  book t h e y  i t i s an  Keats  the  i n each  t e n d t o lump  the (p.148).  acknowledge the  of i d e n t i f y i n g each c l i e n t ' s unique experience symptoms.  of  amorphous b l o b . . . "  T h e r e a r e some, h o w e v e r , who  and  importance  with  (1989) w r i t e ,  the  schizophrenia  individual disease.  In  their  d e s c r i b e the case h i s t o r i e s of four people.  They  observe t h a t while the four c l i e n t s share the diagnosis schizophrenia, there t h e symptoms. beyond t h e  i s much d i v e r s i t y  i n t h e i r experience  They s u g g e s t t h a t i t i s i m p o r t a n t  i l l n e s s which h i g h l i g h t s the unique aspects  Docherty  (1990) w r i t e t h a t i t i s n o t  symptoms s i g n a l i n g  commonly d i s c u s s e d .  and inform  reoccurrence  They w r i t e t h a t  different  add  d i f f e r e n c e s between c l i e n t s u n d e r s c o r e t h e v a l u e  that of  a c q u i r i n g a thorough knowledge of each c l i e n t ' s e x p e r i e n c e illness.  the  the  i n d i v i d u a l s show u n i q u e c l u s t e r s o f symptoms, a n d these  of  schizophrenia  sufficient to  i l l n e s s b e c a u s e n o t a l l c l i e n t s show  manifestations  of  of  look  I n t e r m s o f symptoms, H a f e z , F r a n k  f a m i l i e s o f common s i g n s and of the  to  formal diagnosis t o the c l i e n t ' s experience  i n each c l i e n t .  of  of  164 O t h e r s , such as Liberman Scheid  e t a l . (1987), T o r r e y  ( 1 9 9 0 ) , r e m i n d u s t h a t no one  (1988)  symptom o r s i g n i s f o u n d  i n a l l c l i e n t s w i t h s c h i z o p h r e n i a and t h e n a t u r e o f  the  symptoms c a n be q u i t e d i f f e r e n t f r o m one p e r s o n t o t h e As T o r r e y  Some symptoms, l i k e h a l l u c i n a t i o n s , a r e a s s u m e d t o  i n o n l y 50 t o 75 p e r c e n t o f t h e s e c l i e n t s  1990).  E v e n i f c l i e n t s h a v e t h e same symptom, t h e n a t u r e  (1987) a n d W i n g s c h i z o p h r e n i a may  be m a n i f e s t e d i n v a r y i n g d e g r e s s  e x p l a i n s t h a t a t one  e x t r e m e t h e i n d i v i d u a l c a n c h o o s e how This v a r i a b i l i t y  at the  Another  One  evident i n  client  said  s a i d he h e a r d v o i c e s  n o t b o t h e r e d by them, and  t h a t i n t h e p a s t h a l l u c i n a t i o n s had been v e r y F o r one  other  much t o a t t e n d t o them.  of p a r t i c i p a n t s i n t h i s study.  o f t e n b u t was  overwhelming  i n t h e n a t u r e o f symptoms was  he n e v e r h a d h a l l u c i n a t i o n s .  of  extreme t o the  extreme they are  i n t h e i r i m p a c t and d o m i n a t e b e h a v i o r and  the accounts  et a l .  W i n g (1987) w r i t e s t h a t  symptoms s u c h a s h a l l u c i n a t i o n s v a r y f r o m one He  of  (1987) p o i n t o u t t h a t t h e symptoms o f  severity for varying durations.  fairly  are  (Schied,  t h e symptom v a r i e s f r o m p e r s o n t o p e r s o n . L i b e r m a n  other.  kind  of  be e x p e r i e n c e d by a l l p e o p l e w i t h s c h i z o p h r e n i a , b u t found  next.  (1988) e x p l a i n s , some c l i e n t s h a v e more o f one  o f symptom, o t h e r c l i e n t s h a v e more o f a n o t h e r k i n d symptom.  and  another  said  troublesome.  p e r s o n h a l l u c i n a t i o n s i n t e r f e r e d w i t h w o r k and f o r  t h e o t h e r , h a l l u c i n t a t i o n s were n o t d i s r u p t i v e t o work. e a c h o f t h e s e p e o p l e t h e n , t h e b e s t way  t o appreciate the  For  165 i m p a c t o f t h e i r symptoms o n w o r k e x p e r i e n c e i s t o u n d e r s t a n d t h e e x a c t n a t u r e o f t h e symptoms f o r e a c h p e r s o n . i n c h a p t e r 2, t h e r e i s some d i s a g r e e m e n t  As noted  i n t h e l i t e r a t u r e as  t o t h e i m p a c t o f symptoms o n t h e w o r k e x p e r i e n c e .  Some s a y  t h a t symptoms a r e o n e o f t h e m o s t d i s r u p t i v e f a c t o r s a n d others disagree.  I t may b e l e s s i m p o r t a n t t o a r g u e  whether  symptoms s u c h a s h a l l u c i n a t i o n s a f f e c t w o r k a s i t i s t o u n d e r s t a n d t h e n a t u r e o f e a c h c l i e n t ' s symptoms.  One  c l i e n t ' s w o r k e x p e r i e n c e may b e d r a s t i c a l l y a f f e c t e d b y h a l l u c i n a t i o n s and another person, a l s o e x p e r i e n c i n g h a l l u c i n a t i o n s , may e n c o u n t e r f e w p r o b l e m s . Another  a s p e c t t h a t was u n i q u e f o r e a c h p e r s o n i n t h e  s t u d y a n d i n f l u e n c e d t h e w o r k e x p e r i e n c e was t h e c o u r s e o f illness.  I t appears t h a t i t i s important t o acknowledge t h e  u n i q u e c o u r s e o f i l l n e s s because o f i t s e f f e c t on t h e work experience.  H o w e v e r , a s i s t h e c a s e w i t h symptoms o f  s c h i z o p h r e n i a , t h e r e o f t e n a r e assumptions course of schizophrenia.  made a b o u t t h e  I t i s often erroneously thought  that the i l l n e s s takes a c h a r a c t e r i s t i c d e b i l i t a t i n g Some, s u c h a s M c G l a s h e n a n d K e a t s Docherty  (1989) a n d H a f e z , F r a n k a n d  (1990), i n d i c a t e t h a t i t i s important t o acknowledge  t h a t each c l i e n t has a unique course o f i l l n e s s . and  course.  c o l l e a g u e s (1990) amd C i o m p i  (1986) m e n t i o n  Jeffries that there i s  no o n e common o r s p e c i f i c c o u r s e o f i l l n e s s f o r schizophrenia.  The e x a m i n a t i o n o f i n d i v i d u a l l i f e  histories  r e v e a l many d i f f e r e n t a n d c o m p l e x p a t t e r n s o f a d j u s t m e n t  over  166 time  (Boker, Brenner, G e r s t n e r , K e l l e r , M u l l e r &  1984;  Westermeyer, Harrow & Carone,  1987).  Spichtig,  I n a d d i t i o n , many  v a r i a b l e s have been i d e n t i f i e d as i n f l u e n c i n g t h e c o u r s e o f illness. The  i n d i v i d u a l ' s s e n s e o f h i s / h e r own  value also plays a  c r u c i a l r o l e i n t h e outcome o f s c h i z o p h r e n i a (Barham,1984). S t r a u s s , Hafez, Lieberman may  and H a r d i n g  (1985) s a y t h a t  have an a c t i v e r o l e i n t h e c o u r s e o f i l l n e s s ,  as  s t r e n g t h s and v u l n e r a b i l i t i e s change o v e r t i m e , and i n f l u e n c e the course of i l l n e s s .  1981),  (Vaughn & L e f f ,  s o c i a l supports  psychosocial treatment  1979),  life  (Day,  and  (Maher & G u n d e r s o n , 1 9 7 9 ) .  Ciompi  i t would  influences  be i n a c c u r a t e t o c l a i m  a  f o r each p a r t i c i p a n t  was  course.  A t h i r d a s p e c t t h a t was the coping e f f o r t s .  unique  Participants'  accounts revealed that  t h e i r c o p i n g s t r a t e g i e s c o u l d be b r o a d l y g r o u p e d  into  H o w e v e r , e a c h p e r s o n h a d h i s / h e r own  s t r a t e g i e s , and t h e e x t e n t t o w h i c h each p e r s o n had c o p i n g s t r a t e g i e s was  different.  Selzer, Sullivan,  certain  particular developed  Indeed the f a c t t h a t  i n d i v i d u a l s s p o k e o f c o p i n g e f f o r t s may some.  include  (Cohen & S o k o l o v s k y , 1 9 7 8 ) ,  on t h e c o u r s e o f i l l n e s s ,  categories.  these  events  (1986) p o i n t s o u t t h a t , g i v e n t h e g r e a t v a r i e t y o f  predictable  their  Other v a r i a b l e s t h a t have  been i d e n t i f i e d as a f f e c t i n g t h e c o u r s e o f i l l n e s s f a m i l y environment  clients  be s u r p r i s i n g  these to  C a r s k y & T e r k e l s e n (1989) p o i n t o u t  t h a t h o s p i t a l and community s t a f f d e m o n s t r a t e  a tendency  to  167 speak o f t h e p a t i e n t as a v i c t i m o f a b i o l o g i c a l without g i v i n g a t t e n t i o n t o the adaptive  illness,  response or s u r v i v a l  s t r a t e g i e s employed by p a t i e n t s t o cope w i t h t h e i l l n e s s . Cohen and B e r k  (1985) w r i t e , t h e r a p i s t s o f t e n assume t h a t  t h e y have a l l t h e answers and t h e c l i e n t h a s none. a u t h o r s a d d t h a t c u r r e n t d a t a i n d i c a t e many p e o p l e schizophrenia  develop a wide v a r i e t y o f coping  d e a l w i t h d i f f e r e n t t y p e s o f symptoms. h e a l t h workers should the various  As  coping  These with  mechanisms t o  They s a y t h a t  be s e n s i t i z e d t o t h e need t o e x p l o r e  s t y l e s t h a t t h e s e c l i e n t s employ.  a l s o add t h a t d u r i n g  mental  They  t h e c o u r s e o f t h e i r s t u d i e s t h e y were  s t r u c k by t h e i r c l i e n t s '  s u r p r i s e and p l e a s u r e  that  anyone  w o u l d d e v o t e t i m e t o e x a m i n i n g t h e methods t h a t t h e y had devised  f o r managing t h e i r  symptoms.  Hafez, Frank and Docherty attention paid t o clients' Unfortunately, recovery  coping  efforts.  They w r i t e :  the active role of the patient i n the  from s e v e r e p s y c h i a t r i c i l l n e s s has been  r e l a t i v e l y neglected. i l l  (1990) comment o n t h e l a c k o f  Conceptualization  of the mentally  person as a h e l p l e s s v i c t i m o f a disease,  f a m i l y , o r s o c i a l environment i s so p e r v a s i v e  pathogenic that  good  d a t a o n how a p e r s o n may i n t e r a c t w i t h o r i n f l u e n c e t h e disease  process i s lacking.  Nonetheless,  f i n d i n g s based on s i n g l e c a s e r e p o r t s ,  recent  autobiographical  168 d e s c r i p t i o n s and information recovery Strauss,  longitudinal studies provide  on t h e  a c t i v e r o l e of the p a t i e n t  from i l l n e s s  c l e a r and  Lieberman  illness.  (p.163),  pervasively  whether e f f e c t i v e or not,  Their  goes  subject.  The  subject  i n q u i r e d a b o u t w h a t she  illness.  The  them  w o u l d be  t h e y had  subjects  a  never  illness.  about t h e i r e f f o r t s  indicated surprise,  Berk's subjects,  i n t e r e s t e d , s i n c e no  one  that had  the  ever  asked  before. As  i n d i c a t e d , when c l i n i c i a n s and  individuals with  schizophrenia  f i n d t h a t t h e s e c l i e n t s do strategies. discuss the  clients*  experience with  a s k e d why  subjects  s i m i l a r t o t h a t o f Cohen and rsearchers  unnoticed"  d i d t o i n f l u e n c e her  Subsequently, they asked other t o manage t h e  patient  i n t e r e s t i n understanding t h e i r  e f f o r t s a t s e l f - m a n a g m e n t g r e w f r o m an research  client's  They w r i t e , " I t i s q u i t e  somewhat e m b a r r a s s i n g how  initiative,  (1987) i n d i c a t e t h a t  be made t o a c k n o w l e d g e t h e  a t t e m p t s a t managing the  in  (p.100).  H a r d i n g , H a f e z and  more e f f o r t s h o u l d  valuable  Strauss,  researchers  about coping  efforts,  develop a range of  H a r d i n g , H a f e z and  a f f e c t the  illness.  Lieberman  (1987) evidence  They n o t e t h a t f a c t o r s f r o m s l e e p  to psychological  of  i n managing f a c t o r s w h i c h  hope, from p h y s i c a l h e a l t h t o courage, from resources  they  coping  f i n d i n g s from t h e i r s t u d i e s which p r o v i d e  a c t i v e r o l e of the c l i e n t  ask  energy can  to  material  t a k e an  active role in  169 the  recovery  process.  Wing (1983; 1987)and Tsuang  acknowledge t h a t c l i e n t s , i l l n e s s and  o f t e n by  (1982)  sometimes a f t e r l o n g p e r i o d s  trial  and  error, begin to  f a c t o r s t h a t make t h e m w o r s e o r b e t t e r . i d e n t i f i e s f a c t o r s , p a r t i a l l y under the  Wing  understand (1987)  client's control,  t h a t s e r v e as a b a s i s f o r self-managment. i n c l u d e d e c i s i o n s about whether or not  of  These f a c t o r s  to take  medication,  knowledge of s i t u a t i o n s t h a t t r i g g e r decompensation, opportunities for helping  f o r u t i l i z i n g o n e ' s t a l e n t and  others  t o understand the  same f a c t o r s w e r e d e s c r i b e d Boker  opportunities  illness.  Many o f  by p a r t i c i p a n t s i n t h i s  (1987) a l s o w r i t e s a b o u t t h e c o p i n g  clients with  schizophrenia.  these  study.  e f f o r t s of  I t would appear from  Boker's  a r t i c l e t h a t much o f t h e w o r k t o w a r d i d e n t i f y i n g c l i e n t s ' efforts Europe.  i n t h i s regard He  i s being  u n d e r t a k e n by  researchers  c i t e s a number o f E u r o p e a n s t u d i e s L a n g e , 1981;  i d e n t i f i e d the  self-managment i n i t i a t i v e of p e o p l e Other references  t o cope w i t h t h e i r s c h i z o p h r e n i a (1984), Strauss,  1982)  (Boker &  B r e n n e r , 1983;  schizophrenia.  Suellwold,  which have  i n c l u d e K a n a s and  H a f e z , L i e b e r m a n and  Harding Wurgler  Barr  (1985),  and  (1987).  There i s a l s o s u b s t a n t i a l evidence t h a t people  more d i f f i c u l t  with  discussing clients' efforts  B r e n n e r , B o k e r , M u l l e r , S p i c h t i g and  schizophrenia  with  are a b l e t o d e v e l o p s t r a t e g i e s f o r managing aspects of the  symptoms ( B r i e r & S t r a u s s ,  illness,  1983;  in  that i s  psychotic  Falloon & Talbot,  1981;  the  170 Gross,  1987;  Sommer & Osmond, 1 9 8 3 ) .  Talbot  (1981),  i n a study of people  F o r e x a m p l e F a l l o o n and s u f f e r i n g from  persistent  a u d i t o r y h a l l u c i n a t i o n s , note t h a t a l l s u b j e c t s employed coping s t r a t e g i e s t o reduce symptom.  the d i s a b i l i t y caused  the  S t r a u s s e t a l . (1987) s a y t h a t t h e c l i e n t ' s r o l e i n  t h e r e c o v e r y from p s y c h o s i s can range from involvement,  such as compliance  of  clients*  some a u t h o r s make o t h e r i n t e r e s t i n g  For example, Brenner,  Boker,  and  process.  a d d i t i o n t o r e c o g n i z i n g the presence  coping e f f o r t s ,  minimal  with medication, to f u l l  a c t i v e p a r t i c i p a t i o n i n the recovery In  by  M u l l e r , S p i c h t i g and  points.  Wurgler  (1987) w r i t e t h a t , when a c l i e n t c a n c o n c e n t r a t e h i s / h e r s t r e n g t h and  energy  on t h e m o s t e f f e c t i v e e f f o r t s ,  the  e x p e r i e n c e s e r v e s t o s t r e h g h t e n h i s / h e r autonomy and r e s p e c t , both of which  c a n be s e v e r e l y damaged t h r o u g h  long p e r i o d of i l l n e s s .  Cohen and B e r k  more r e s e a r c h i s c o n d u c t e d  the  (1985) w r i t e t h a t ,  as  i n t h i s a r e a , methods f o r  a u g m e n t i n g p a t i e n t s c o p i n g m e c h a n i s m s c a n become an adjunct to t r a d i t i o n a l  self-  important  treatment.  A f o u r t h a s p e c t t h a t was  unique  f o r each p a r t i c i p a n t  was  h i s / h e r premorbid  e x p e r i e n c e , i n c l u d i n g e x p e r i e n c e w i t h work.  There i s evidence  i n t h e l i t e r a t u r e t h a t acknowledgment of  each c l i e n t ' s previous experience i s s i g n i f i c a n t , particularly experiences  i n l i g h t of the f a c t that previous i n f l u e n c e t h e i l l n e s s and  h i s t o r y of adjustment  life  employment outcomes.  p r i o r t o onset of i l l n e s s  is a  factor  A  171 determining (Ciompi, Keats  whether a person w i l l  have a good o r p o o r  1986; T o r r e y , 1988; Wing, 1978).  (1989)  As McGlashen and  i n d i c a t e , t h e more t h e p e r s o n h a s d e v e l o p e d t h e  c a p a c i t y t o work and s o c i a l i z e b e f o r e t h e i l l n e s s ,  the better  i s t h e i r o v e r a l l s h o r t and long-term p r o g n o s i s .  Also,  i s abundant  i sa  evidence that previous  jobstability  p r e d i c t o r o f s t a b l e work f o r c l i e n t s w i t h (Anthony & B u e l l , Allison  outcome  1974; Anthony  there  schizophrenia  & J a n s e n , 1984; C o l e ,  Brewer,  & B r a n c h , 1 9 6 4 ; L o r e i & G u r e l , 1 9 7 3 ; Monck, 1 9 6 3 ) .  A final  f a c t o r t h a t was d i f f e r e n t f o r e a c h p e r s o n was  the s o c i a l s k i l l s  and s o c i a l network.  h i s / h e r own l e v e l o f s k i l l ,  Each p a r t i c i p a n t had  number a n d q u a l i t y o f  r e l a t i o n s h i p s and t h i s v a r i e d throughout t h e c o u r s e o f t h e illness. skills  O f t e n b r o a d c o m m e n t s a r e made a b o u t t h e s o c i a l  ans r e l a t i o n s h i p s o f people w i t h  schizophrenia.  S t u d i e s h a v e shown t h a t p e o p l e w i t h s c h i z o p h r e n i a h a v e f e w e r s o c i a l networks Glesser  (Froland, Brodsky,  O l s o n & S t e w a r t , 1979;  & G o t l s c h a l k , 1 9 6 7 ; M a r c e l l a & S n y d e r , 1981) a n d many  have d i f f i c u l t i e s  i n social interaction  Strauss, Catpenter & Bartko,  1974).  (Serban 1975,  Some ( B e l l a c k & H e r s e n ,  1 9 7 8 ; H e r s e n & B e l l a c k , 1976) i n d i c a t e t h a t p o o r functioning i s a hallmark be s u c h e m p h a s i s  of schizophrenia.  social  T h e r e seems t o  o n d e s c r i b i n g t h e common s o c i a l s k i l l s a n d  networks o f c l i e n t s w i t h schizophenia  that t h e unique  characteristics of individuals are rarely  considered.  social  172 Individualized  Intervention  From t h e l i t e r a t u r e , i t w o u l d a p p e a r t h a t t h e r e acknowledgment o f t h e s u b j e c t i v e n a t u r e o f each  i s some  individual's  e x p e r i e n c e w i t h t h e symptoms a n d c o u r s e o f s c h i z o p h r e n i a . T h e r e i s a g r o w i n g a w a r e n e s s t h a t many c l i e n t s individual general  ways t o cope w i t h t h e i r  i l l n e s s , and t h e r e i s  r e c o g n i t i o n t h a t i t i s i m p o r t a n t t o be aware o f a  each c l i e n t ' s premorbid experience. of each c l i e n t s s o c i a l s k i l l s , f o c u s o n t h e common e x p e r i e n c e .  There i s l e s s  Do p r o f e s s i o n a l s make u s e o f i n providing health  s p e c i f i c a l l y employment g u i d a n c e , f o r p e o p l e  schizophrenia?  discussion  with t h e tendency being t o  knowledge o f t h e unique i n d i v i d u a l and  learn  care,  with  Some a u t h o r s i n d i c a t e t h a t t h e y s e e k a n  u n d e r s t a n d i n g o f each i n d i v i d u a l ' s  e x p e r i e n c e and  circumstances,  on t h i s  and base t h e i r  Selzer, Sullivan,  care  Carsky and T e r k e l s o n  information.  (1989) w r i t e  that  t h e i r t r e a t m e n t method draws on t h e p r e m i s e t h a t an understanding of the c l i e n t ' s subjective experience of symptoms a n d i l l n e s s p r o c e s s , control, quality  c o n c e r n s w i t h autonomy and  e m o t i o n a l responses and so on, i s c r i t i c a l of care.  tothe  They i n d i c a t e t h a t a c l i n i c i a n must be  committed t o understanding each c l i e n t ' s e x p e r i e n c e o f t h e illness,  t h e i r a t t e m p t s t o cope w i t h t h e i l l n e s s and t h e  individual's Stein, provide  reaction to the illness.  Diamond and F a c t o r individualized  (1990) d e s c r i b e  how t h e y  t r e a t m e n t programs f o r t h e i r  clients.  173 We c a r e f u l l y from  assess  h o u s i n g and f i n a n c e s t o s o c a i l i z a t i o n and  medication, supports design  The p a t i e n t ' s s k i l l s ,  m u s t a l l be c a r e f u l l y  motivation,  considered.  We  then  t o make a s t a b l e a d j u s t m e n t t o c o m m u n i t y  (p.217).  They a l s o promote t h e c l i e n t ' s c o p i n g control of i n f l u e n t i a l factors.  efforts,  including  T h e y w r i t e t h a t t h e y do n o t  attempt t o c o n t r o l c l i e n t s regarding medication They o f t e n a g r e e t o c l i e n t s ' r e q u e s t s medication  g o a l s and  a program t o e n s u r e t h a t t h e p a t i e n t h a s what he  needs i n order life  p a t i e n t s i n a broad range of areas,  f o r s m a l l changes i n  because i t g i v e s a c l i e n t a r e a l  sense o f c o n t r o l i n t h e i r  decisions.  and  important  treatment.  L i b e r m a n e t a l . (1987) w r i t e t h a t i t i s u s e f u l t o v i e w c l i e n t s a s a c t i v e p a r t i c i p a n t s i n t h e management o f t h e i r disorder.  Their  "vulnerability-stress-coping-competance  model" f o r s c h i z o p h r e n i a i n d i v i d u a l ' s experience individual illness.  provides  direction  w i t h t h e i l l n e s s and f o r h e l p i n g t h e  t o i m p r o v e t h e i r own c o n t r i b u t i o n s t o m a n a g i n g t h e They acknowledge p e o p l e w i t h s c h i z o p h r e n i a  reduced capacity t o a c t e f f e c t i v e l y behavioral can  f o r assessing the  impairment.  exercise choice,  because o f c o g n i t i v e and  However t h e y a r g u e t h a t t h e s e  a c t upon t h e i r  p e r s o n a l i t y , and by so d o i n g  have a  clients  environment and  influence their  illness.  They  p o i n t o u t t h a t l e a r n i n g how t o c o p e w i t h t h e symptoms, manage  174 m e d i c a t i o n , a n d u t i l i z e p r o f e s s i o n a l r e s o u r c e s when n e c e s s a r y are important goals f o r r e h a b i l i t a i o n . B a r h a m (1984)  a g r e e s t h a t community c a r e o f p e o p l e  with  s c h i z o p h r e n i a s h o u l d be b a s e d on r e s p e c t f o r t h e c l i e n t a s a " p e r s o n " and s h o u l d t a k e i n t o a c c o u n t t h e i n d i v i d u a l ' s purposes  and s i t u a t i o n .  He n o t e s t h a t t h e p r o m o t i o n  aims,  of  v a r i o u s forms o f s e l f - c a r e i s a k e y component o f community care p o l i c i e s ,  a n d he s u g g e s t s t h a t we  n e e d t o l e a r n more  about t h e e x t e n t t o which people w i t h severe  mental  d i s a b i l i t i e s m i g h t be i n v o l v e d more d i r e c t l y  in their  own  care. Selzer,  S u l l i v a n , C a r s k y & T e r k e l s e n (1989)  note t h a t i f  c l i e n t s and c l i n i c i a n s a r e t o e s t a b l i s h a u s e f u l alliance,  i t i s e s s e n t i a l t h a t c l i n i c i a n s seek  treatment  an  understanding of t h e i r c l i e n t s ' views of themselves, i n c l u d i n g how  t h e y u n d e r s t a n d t h e i r symptoms.  They add  that  t h e s u b j e c t i v e e x p e r i e n c e o f c l i e n t s s h o u l d be  addressed,  i n c l u d i n g c o n c e r n s a b o u t autonomy a n d c o n t r o l ,  symptoms,  i l l n e s s process.  F i n a l l y , H a f e z , F r a n k and D o c h e r t y  write that i t i s e s s e n t i a l f o r the  (1990)  clinician  t o make i n t e r v e n t i o n s t h a t a r e c o n t e x t u a l l y m e a n i n g f u l t h a t a r e r e l e v a n t t o each c l i e n t The  and  i n his/her l i f e  situation.  a b o v e d i s c u s s i o n f o c u s e s on g e n e r a l h e a l t h  i n t e r v e n t i o n s and r e h a b i l i t a t i o n measures. r e f e r e n c e t o t h e i n d i v i d u a l needs o f c l i e n t s vocational rehabilitaion literature?  There  and  Is there i n the i s some  care  175 d i s c u s s i o n i n the  l i t e r a t u r e about t h e need t o  i n d i v i d u a l i z e d employment g u i d a n c e .  T e s t and  e x p l a i n t h a t , b a s e d on t h e i r c l i n i c a l and  unpublished data,  preferences  guidance to the reports  on t h e  for individual  g i v e n when p r o v i d i n g  c h r o n i c a l l y mentally  B e r l i n (1981)  observations  careful consideration  n e e d s t o be  provide  ill.  employment  Jacobs  (1988)  s i g n i f i c a n c e of i n d i v i d u a l i z e d assessment  i n t e r v e n t i o n i n c l u d i n g assessement o f work s k i l l s , history,  current  writes  adequacy of c o p i n g  mechanisms.  skills  may  r e a c t d i f f e r e n t l y t o s t r e s s and  d i f f e r e n t vocational goals. for  He  family He  that:  E v e n p a t i e n t s w i t h s i m i l a r j o b h i s t o r i e s and  be  work  l e v e l o f p s y c h o p a t h o l o g y , s o c i a l and  s u p p o r t s y s t e m s , and  and  One  require  p a t i e n t may  c o m p e t e t i v e community employment, w h i l e ready only  f o r s h e l t e r e d employment  a r g u e s t h a t each p e r s o n has  deficits,  be  suitable  another  may  (p.249).  a unique p r o f i l e of  v u l n e r a b i l i t y t o s t r e s s and  t h a t r e q u i r e s an  social  s e v e r i t y of  assets, symptoms  individually tailored prescription for  employment i n t e r v e n t i o n . H u r s h and  Anthony  r e h a b i l i t a i o n should unique strengths,  and  client's  feelings experienced  s p e c i f i c work e n v i r o n m e n t s .  a great  r e h a b i l i t a t i o n i s the  vocational  i n v o l v e assessment of the  deficits,  r e l a t i o n t o w o r k and to these authors,  (1983) w r i t e t h a t  failure  in  According  in vocational  f a i l u r e to teach  c l i e n t s the  skills  176 necessary t o choose o c c u p a t i o n s which r e l a t e t o t h e i r i n t e r e s t s , values  and a b i l i t i e s ,  and t o t h e r e b y g i v e  some r e s p o n s i b i l i t y a n d c o n t r o l i n m a k i n g concerning vocational choice.  them  decisions  Work d o e s n o t become a  p e r s o n a l l y r e w a r d i n g a c t i v i t y when p l a c e m e n t i s made i n t o a work s e t t i n g w i t h  little  relevance.  They add t h a t , i n t h o s e  s i t u a t i o n s , what f o l l o w s i s a l a c k o f i n v o l v m e n t i n work a c t i v i t y a n d no r e s p o n s i b i l t y i n m a k i n g d e c i s i o n s future career  about  plans.  Anthony, H o w e l l and Danley i n d i v i d u a l asessment, p l a n n i n g  (1984) a l s o c a l l f o r and i n t e r v e n t i o n based on t h e  i n d i v i d u a l ' s needs, i n t e r e s t s and  unique assests.  Lamb  (1983) s a y s t h a t a m a j o r f a c t o r i n v o c a t i o n a l r e h a b i l i t a i o n of  long-term c l i e n t s  vocational plans will  able t o i n d i v i d u a l i z e t h e i r  and match each p e r s o n w i t h a program  maximize h i s / h e r p o t e n t i a l but not exceed  capabilites. and  i s being  his/her  He a d d s t h a t t o o o f t e n i t i s t h e p r o f e s s i o n a l ' s  not the c l i e n t ' s goal that i s i d e n t i f i e d .  professionals f a i l job options  that  He s a y s  that  t o u n d e r s t a n d t h a t t h e y need t o d e v e l o p  t h a t r e f l e c t t h e c l i e n t ' s unique i n t e r e s t s and  values. The An the  S o c i a l Context  overview of the p a r t i c i p a n t s • accounts reveals  s o c i a l context  must be c o n s i d e r e d  that  i n relation to the  e x p e r i e n c e o f l o o k i n g f o r and k e e p i n g work.  Two a s p e c t s i n  177 particular,  s o c i a l s t i g m a and community s u p p o r t ,  the p a r t i c i p a n t s * Social  influenced  experiences.  Stigma  The  f i r s t aspect,  many p a r t i c i p a n t s .  s o c i a l stigma,  was a m a j o r c o n c e r n o f  From t h e i r p e r s p e c t i v e ,  misunderstanding of schizophrenia  prevail  stigma and  i n t h e 1990's.  E a r l i e r s t u d i e s have demonstrated t h e p u b l i c ' s a t t i t u d e towards t h e mentally  ill.  Roman a n d F l o y d  i n a r e p l i c a t i o n o f s t u d i e s by P h i l i p s (1974), mentally earlier  ill  (1964) a n d K i r k  remains s i m i l a r t o t h e l e v e l  studies.  ill.  a t t i t u d e s toward t h e  The a t t i t u d e s w e r e s i m i l a r t o t h e n e g a t i v e i n e a r l i e r s t u d i e s by B l i z a r d  O l m s t e d a n d Durham ( 1 9 7 6 ) . work, Olmsted and Smith socialized  found i n these  I n New Z e a l a n d , W a l k l e y , G r e e n a n d T a y l o r  attitudes reported  The  (1981),  report that the public's level of rejection of the  (1981) f o u n d p e r s i s t e n t n e g a t i v e mentally  negative  earlier  a t t i t u d e s about mental  that schizophrenia  i s s h a r e d b y many p r o f e s s i o n a l s . surveyed nurses,  and  (1980) f o u n d t h a t y o u t h a r e  i n t o the negative  perception  Also consistent with  (1968),  i shighly  illness.  stigmatized  I n 1 9 8 2 , Toews a n d B a r n e s  s o c i a l workers, p s y c h i a t r i s t s and  psychologists across  Canada t o document t h e s t a t u s o f  services for the c h r o n i c a l l y mentally  ill.  On t h e b a s i s o f  t h e i r s u r v e y r e s u l t s , t h e a u t h o r s s t a t e d t h a t an campaign o f p u b l i c education  aggressive  a n d a d v o c a c y was u r g e n t l y  r e q u i r e d t o i n c r e a s e p u b l i c awareness o f t h e needs o f p e o p l e  178 w i t h longterm mental attached to i t .  i l l n e s s and t o d e c r e a s e t h e s t i g m a  The s u r v e y showed t h a t t h e s e  professionals  p l a c e d n e g a t i v e p u b l i c a t t i t u d e a s 4 t h o u t o f 15 p o s s i b l e barriers to services. present.  This perception continues t o the  Much o f t h e c u r r e n t p o p u l a r l i t e r a t u r e  schizophrenia  (Garson,  1986; J e f f r i e s ,  on  Plummer, T h o r n t o n  &  Seeman, 1 9 9 0 ; T o r r e y , 1 9 8 8 ; W a l s h 1985) r e f e r s t o t h e s t i g m a and m i s u n d e r s t a n d i n g professionals Driscol,  of schizophrenia.  (Anthony,  H o w e l l and Danley  In particular, 1984; B e t v a n  many &  1 9 8 1 ; T o r r e y , 1988) assume t h a t s t i g m a i s a n  o b s t a c l e t o employment f o r p e o p l e w i t h s c h i z o p h r e n i a . B e c a u s e o f t h e p e r c e p t i o n s o f s t i g m a , some p a r t i c i p a n t s i n t h i s s t u d y e x p e c t e d t h a t t h e y w o u l d l o s e f r i e n d s a n d be t r e a t e d i n a s t e r e o t y p e d manner i f t h e y d i s c l o s e d diagnosis.  their  Many b e l i e v e d t h e y w o u l d n o t b e h i r e d o r w o u l d be  t r e a t e d d i f f e r e n t l y by e m p l o y e r s .  However, o n l y a few  p r o v i d e d examples o f s i t u a t i o n s i n which t h e y were t r e a t e d i n a n e g a t i v e way i n s o c i a l o r w o r k s i t u a t i o n s .  In fact,  s e v e r a l p r o v i d e d examples o f work s i t u a t i o n s i n w h i c h were s u p p o r t e d .  they  One i n d i v i d u a l i n f o r m e d t h e e m p l o y e r a b o u t  h i s i l l n e s s a n d was g i v e n a j o b .  Others were r e t a i n e d  t h e i r employer f o l l o w i n g d i s c l o s u r e of t h e i l l n e s s .  by  One  p e r s o n was r e - h i r e d by a n e m p l o y e r who was a w a r e o f t h e employee's i l l n e s s . and  Y e t a n o t h e r s a i d he had been b e f r i e n d e d  s u p p o r t e d by h i s e m p l o y e r .  179 Other s t u d i e s report t h a t , while  subjects  anticipate  s t i g m a , i n r e a l i t y they a r e o f t e n supported by f r i e n d s and employers. subjects  F o r e x a m p l e , Simmon's  (1965) a n d W a r r e n ' s  (1987)  a n t i c i p a t e d stigma, but these authors i n d i c a t e that  i t was n o t a l w a y s b o r n e o u t i n t h e i n d i v i d u a l s '  experience.  I n W a r r e n ' s s t u d y , t h e women e x p r e s s e d f e a r s t h a t , ^ h o s p i t a l i z a t i o n f o r a mental i l l n e s s , stigmatized  i n t h e community.  t h e y w o u l d be  The a u t h o r e x p l a i n s t h a t h e r  s u b j e c t s ' p o s t - h o s p i t a l p e r i o d t e n d e d t o be l e s s than anticipated. women's l i f e  With o n l y a few e x c e p t i o n s ,  options,  problematic  neither the  n o r t h e i r r e l a t i o n s w i t h p e o p l e who  knew t h e i r h i s t o r y w e r e d r a m a t i c a l l y a f f e c t e d . were e x p e c t i n g  following  T h e women  t o experience stigma i n t h e i r r e l a t i o n s h i p  w i t h n e i g h b o r s , b u t i n o n l y one s i t u a t i o n d i d t h i s a c t u a l l y occur.  T h e a u t h o r n o t e s t h a t t h o s e who d i d h a v e p r o b l e m s  w i t h d i s c r i m i n a t i o n w e r e t h o s e whose p o s t - h o s p i t a l included or jobs.  experience  attempts t o sign contracts, obtain d r i v e r s l i c e n s e s Unfortunately  this  l a t t e r . p o i n t i snot elaborated  upon by t h e a u t h o r . Simmon's and  (1965) m a l e s u b j e c t s  misunderstanding.  also a n t i c i p a t e d stigma  However, o n l y one s p e c i f i c  recorded by t h e author.  incident i s  Simmons m e n t i o n s t h a t o n e s u b j e c t  was a b o u t t o b e h i r e d b u t l o s t t h e j o b when h e e x p l a i n e d he  was m e n t a l l y  ill.  However, two o t h e r  subjects,  both of  whom b e l o n g e d t o u n i o n s , f o u n d t h a t t h e u n i o n i g n o r e d p s y c h i a t r i c problem and p r o v i d e d  opportunites  that  their  f o r work.  For  180 a n o t h e r , an employer o f f e r e d t o h e l p t h e s u b j e c t driver's license.  recover h i s  Y e t a n o t h e r found t h a t h i s work  c o l l e c t e d money t o h e l p h i s f a m i l y .  associates  Other p a r t i c i p a n t s found  t h a t employers were h e l p f u l and accomodated t h e i r needs f o r flexibility  i n work.  T h u s Simmon's c a s e s t u d i e s seem t o  indicate that pernicious imaginary than  and p e r v a s i v e  s t i g m a i s more  real.  Brown, Bone, D a l i s o n  and Wing  (1966) a l s o  provide  evidence t h a t stigma i s not always a s s o c i a t e d w i t h t h e employment e x p e r i e n c e s o f p e o p l e w i t h  schizophrenia.  They  w r i t e t h a t some e m p l o y e r s d o t a k e b a c k e m p l o y e e s a f t e r t h e i r discharge  from a p s y c h i a t r i c h o s p i t a l .  The a u t h o r s s a y t h a t  some e m p l o y e r s i n t h e i r s t u d y showed f r i e n d l y went t o c o n s i d e r a b l e in d i f f i c u l t  trouble t o help  i n t e r e s t and  and s u p p o r t t h e s u b j e c t s  times.  Some s t u d i e s h a v e a t t e m p t e d t o e x a m i n e t h e e f f e c t o f employer a t t i t u d e on a c t u a l h i r i n g p r a c t i c e s . Watts  However, a s  (1983) w r i t e s , " t h i s i s no e a s y m a t t e r t o a s s e s s .  answers o f employers t o questions  about t h e i r w i l l i n g n e s s t o  employ e x - p s y c h i a t r i c p a t i e n t s have produced v e r y r e s u l t s d e p e n d i n g o n how t h e q u e s t i o n s The is  discrepancy evident  discrepant  were worded"  between a t t i t u d e and a c t u a l h i r i n g  i n t h e study reported  The  by Whatley  c a r r i e d o u t a s u r v e y o f 100 e m p l o y e r s .  (1964).  (p.231). practices Whatley  He f o u n d t h a t 79  p e r c e n t o f them i n d i c a t e d , on a q u e s t i o n a i r e ,  that ex-  p a t i e n t s d o a s w e l l a s a n y o n e e l s e w i t h t h e same  181 qualifications.  However o n l y 38 p e r c e n t  s a i d they would  just  a s s o o n h i r e an e x - p s y c h i a t r i c p a t i e n t s a s a n y o n e e l s e . Watts  (1983) s u r m i s e s  t h a t t h e r e may  be no c o n n e c t i o n  t h e a n s w e r s g i v e n on q u e s t i o n a i r e s and a s e m p l o y e r s may  between  the employers a c t i o n s ,  g i v e what t h e y r e g a r d as t h e e x p e c t e d  answer  to the question. Olshansky,  G r o b and Malamud (1958) a n d  B l u m and  Kujoth  (1972) a l s o f i n d t h a t , w h i l e e m p l o y e r s c l a i m t h a t t h e y be w i l l i n g t o e m p l o y e x - p a t i e n t s , v e r y few h a v e done so.  With  would  knowingly  a m e t h o d more s o p h i s t i c a t e d t h a n t h a t o f  p r e v i o u s s t u d i e s by B l u m & K u j o t h (1973) a s s e s s e d some c o n f e d e r a t e  (1972),  F a r i n a and  the p r e j u d i c e s of employers. non-patient  j o b i n t e r v i e w t h a t t h e y had  Felner  In t h e i r  study,  interviewees indicated during a s p e n t t h e p r e v i o u s n i n e months  t r a v e l l i n g , w h i l e o t h e r s s a i d t h a t t h e y had h o s p i t a l f o r t h e n i n e month p e r i o d .  been i n a mental  E m p l o y e r s who  t o b e l i e v e t h e y were i n t e r v i e w i n g e x - p a t i e n t s were favorable i n their attitudes.  were l e d less  They were l e s s f r i e n d l y ,  were  l e s s l i k e l y t o o f f e r a j o b , and g a v e a l o w e r e s t i m a t e o f p r o s p e c t o f work b e i n g  obtained.  I t seems f r o m t h e d i s c u s s i o n t h u s f a r t h a t t h e r e c o n f l i c t i n g data concerning the impact t h e work e x p e r i e n c e s . i n f l u e n c e employers'  behavior towards people  a p p e a r s t o be u n i o n  i n every case.  intervention.  are  of schizophrenia  I t seems t h a t s t i g m a may  s c h i z o p h r e n i a , but not  the  One  operate  on to  with  mitigating  factor  As p r e v i o u s l y m e n t i o n e d ,  182 Simmon's (1965) s u b j e c t s f o u n d t h a t t h e i r u n i o n s t h e m i n t h e i r w o r k e n d e a v o r s , and s t i g m a t i z a t i o n of the subjects. u n i o n s has Allison  t h e r e was The  no  apparent  supportive efforts  been demonstrated i n o t h e r s t u d i e s  & Branch,  supported  (Cole,  t i m e t h a t t h e p e r s o n had  length  worked f o r the employer.  of the p a r t i c i p a n t s of t h i s study  worked w i t h t h e employer of s e v e r a l months, t h e  was  l e s s l i k e l y to respond i n a negative  way.  i n f o r m i n g an e m p l o y e r a b o u t t h e i l l n e s s was d e t r i m e n t a l i f a good work r e c o r d had w i t h t h a t employer.  This  i s mentioned i n other  D a l i s o n & W i n g , 1966;  That i s , not n e c e s s a r i l y  the  studies  achieved  importance  of  (Brown, Bone,  Cole, Brewer, A l l i s o n ,  O l s h a n s k y , G r o b & Malamud, 1 9 5 8 ) . I n t h e s e  they  employer  a l r e a d y been  l a t t e r aspect,  of  Accounts  i n d i c a t e t h a t , when  had  patients seeking  Brewer,  1964).  A n o t h e r m i t i g a t i n g f a c t o r a p p e a r s t o be t h e  work r e c o r d ,  of  & Branch,  studies,  1964;  ex-  t o r e t u r n t o t h e i r o l d j o b s where t h e y  a good work r e c o r d were u s u a l l y reemployed. p r e j u d i c e s operate  have  I t seems t h a t  l e s s s t r o n g l y a g a i n s t p a t i e n t s who  e s t a b l i s h e d a work r e c o r d w i t h a p a r t i c u l a r f i r m  have  (Watts,  1983). To w h a t e x t e n t d o e s s t i g m a experiences  a c t u a l l y i n t e r f e r e w i t h work  of c l i e n t s with schizophrenia?  Conflicting  i n t h e c u r r e n t l i t e r a t u r e makes i t r a t h e r d i f f i c u l t t o However, i n t e r m s o f t h e p a r t i c i p a n t s o f t h i s s t u d y , "bottom l i n e "  data say.  the  i s t h a t they p e r c i e v e d tremendous p u b l i c  stigma  183 of schizophrenia,  and t h e y a n t i c i p a t e d stigma i n s o c i a l and  work s i t u a t i o n s .  This  their  influenced t h e i r behavior.  i l l n e s s from f r i e n d s .  employers.  Some h i d  Many h i d t h e i l l n e s s  from  I n j o b i n t e r v i e w s , s e v e r a l c o v e r e d up t h e i r  i l l n e s s by f i l l i n g  i n gaps i n t h e resume and l e a v i n g t h e  medical h i s t o r y incomplete. This  secrecy  about t h e i l l n e s s  i s , according  t o Goffman  (1968), an expected response t o a " d i s c r e d i t a b l e stigma". P a g e (1984) w r i t e s t h a t i n d i v i d u a l s w i t h d i s c r e d i t a b l e s t i g m a o f t e n attempt t o pass as "normal."  He s a y s t h a t some o f  t h e s e p e o p l e may d e c i d e t o r e s t r i c t  information  about  their  s t i g m a t o a s m a l l group such as f a m i l y and c l o s e f r i e n d s . I n many o t h e r  studies  (Cole, Brewer, A l l i s o n  O l s h a n s k y , Grub & Ekdahl,  & B r a n c h , 1964;  1 9 6 0 ; Simmons, 1 9 6 5 ; W a r r e n , 1 9 8 7 ;  Westermeyer & Harrow, 1987), t h e s u b j e c t s '  reponse i s s i m i l a r  t o t h e response of the p a r t i c i p a n t s of t h i s study.  That i s ,  they h i d the diagnosis.  says  F o r e x a m p l e , W a r r e n (1987)  t h a t , among t h e women who a t t e m p t e d t o o b t a i n a f t e r h o s p i t a l i z a t i o n , three kept t h e i r C o l e and c o l l e a g u e s man's b l u f f  secret.  As x  e x i s t s between employers and t h e p a t i e n t  subjects  information  illness  (1964) w r i t e , " a c o n t i n u a l game o f b l i n d  a job a f t e r discharge" three  employment  (p.315).  seeking  I n t h e i r s t u d y , two o u t o f  competing i n t h e l a b o r market d i d n o t r e v e a l  about t h e i l l n e s s .  avoided having t o discuss f o r which formal  their  Subjects  i n their  study  i l l n e s s by a p p l y i n g  a p p l i c a t i o n s were n o t r e q u i r e d  f o r jobs  or skipping  184 t h e i r p s c y h i a t r i c h i s t o r y on,the medical a p p l i c a t i o n . S i m i l a r t a c t i c s were used by t h e p a r t i c i p a n t s o f t h i s Some p a r t i c i p a n t s o f t h i s s t u d y they desired t o hide t h e i l l n e s s , stressful.  study.  i n d i c a t e d t h a t , because  t h e j o b i n t e r v i e w was  A l s o , h i d i n g t h e i l l n e s s from employers and c o -  w o r k e r s r e s u l t e d i n a d d i t i o n a l s t r e s s a t work, a s t h e y maintained out.  a facade o f normalcy and w o r r i e d  I n some c a s e s ,  found  t h i s i n t e r f e r r e d with t h e comfort i n t h e  work environment and, i n a few s i t u a t i o n s , an  about being  i n a b i l i t y t o maintain  the job.  i t contributed to  In relation to the  i n t e r v i e w s t r e s s , L i b e r m a n e t a l . (1990) s a y t h a t  clients  w i t h s c h i z o p h r e n i a o f t e n have s p e c i a l problems r e s p o n d i n g questions  about t h e i r personal  Unfortunately, the with  there  impact o f stigma  circumstances  and r e c e n t  i sa paucity of literature on t h e w o r k - r e l a t e d  to past.  documenting  problems o f people  schizophenia. What e f f o r t s a r e b e i n g made t o h e l p c l i e n t s d e a l  with  t h e i r f e e l i n g s o f s t i g m a t i z a t i o n and t o d e a l w i t h t h e r e a l and  i m a g i n e d work problems r e s u l t i n g from a n t i c i p a t e d and  a c t u a l stigma?  S t u d i e s have demonstrated t h a t p s y c h i a t r i c  c l i e n t s can b e n e f i t from t r a i n i n g i n i n t e r v i e w s k i l l s Laughlin, Claiborne & Patterson,  1979).  T h i s may  c l i e n t s d e a l w i t h concerns about h i d i n g t h e i l l n e s s interviews.  Two p a r t i c i p a n t s i n t h i s s t u d y  t h e community needed e d u c a t i o n highschool  (Kelly,  help during  suggested  that  programs f o r young p e o p l e , o f  a g e , t o i n f o r m them a b o u t t h e i l l n e s s .  They  185 i n d i c a t e d t h a t t h i s would help  t o d e c r e a s e s t i g m a and  m i s u n d e r s t a n d i n g and would h e l p  t h o s e who m i g h t l a t e r  i l l  to feel  become  l e s s f r i g h t e n d and overwhelmed by t h e d i a g n o s i s .  S t e i n , Diamond and F a c t o r  (1990) d e s c r i b e  t h e i r approach t o  educating  employers.  Rather than attempting  t o mount a mass  education  program, t h e y educate and s u p p o r t each employer as  t h e problems a r i s e between t h e c l i e n t and employer.  There i s  l i t t l e m e n t i o n o f o t h e r ways t h a t h e a l t h p r o f e s s i o n a l s a r e helping  clients with  everday l i f e  schizophrenia  o r work.  t o cope w i t h t h e s t i g m a i n  W r i t i n g i n 1984, A n t h o n y , H o w e l l a n d  D a n l e y n o t e d t h a t more s t r a t e g i e s a r e n e e d f o r d e a l i n g stigma against  the psychiatrically disabled.  with  I t appears  that  t h i s remains t r u e today as w e l l . Because t h e p a r t i c i p a n t s  1  accounts revealed  that  was a m a j o r c o n c e r n f o r them, i t m i g h t be a n t i c i p a t e d t h i s t o p i c w o u l d be a f o c u s o f b a s i c m e n t a l h e a l t h texts.  However, few n u r s i n g  b r i e f review of t h i s t o p i c .  texts provide Thus, w h i l e  part of the i l l n e s s experience, the  stigma that  nursing  much more t h a n a  stigma i s a dominant  i t i s only a minor i s s u e i n  t e x t s commonly u s e d i n t h e e d u c a t i o n  of nurses.  I t would  seem t h a t t h i s c o n t r i b u t e s t o t h e l a c k o f s t u d e n t o r i e n t a t i o n to t h i s very  important area of c l i e n t  concern.  Community S u p p o r t The s e c o n d s o c i a l  i n f l u e n c e on p a r t i c i p a n t s '  e x p e r i e n c e s was t h e i n f l u e n c e o f c o m m u n i t y  supports.  P a r t i c i p a n t s r e f e r r e d t o community s u p p o r t i n  discussing  186 being i l l , illness.  b e i n g d i a g n o s e d , w o r k i n g , and  coping with the  T h e r e w e r e some d i f f e r e n c e s i n a v a i l a b i l i t y  of  s u p p o r t s f o r p a r t i c i p a n t s and t h e s e d i f f e r e n c e s seemed t o a f f e c t t h e i r experiences.  One  example of t h e d i f f e r e n c e i n  a v a i l a b i l i t y o f community s u p p o r t s i s t h e d i f f e r e n c e i n housing support. housekeeping  One  room.  p e r s o n o n l y had  He  access to a  s a i d he c o u l d n o t f i n d a j o b t h a t he  c o u l d manage, and t h a t a l s o p r o v i d e d s u f f i c i e n t i n c o m e t o a f f o r d s u i t a b l e housing.  Another  person  in a  different  g e o g r a p h i c a l a r e a h a d t h e o p p o r t u n i t y t o l i v e i n a new a s s i s t e d apartment. was  The  l a t t e r was  rental  a b l e t o f i n d work t h a t  s u i t a b l e ; because o f r e n t a l a s s i s t a n c e , she d i d n o t have  t o worry The  a b o u t t h e a c t u a l wage. problems i n housing f o r t h i s group of c l i e n t s i s  w e l l known.  Many p e o p l e w i t h s e r i o u s m e n t a l  illness  identify  h o u s i n g , n o t t r e a t m e n t , as t h e i r most i m p o r t a n t need (Kuehnel, Liberman, and  Bellack  S t o r z b a c h and R o s e ( 1 9 9 0 ) .  Torrey  (1989) w r i t e t h a t t h e r e i s a d e a r t h o f  low-cost housing f o r patients.  The  impact of  adequate  inadequate  h o u s i n g on t h e e m p l o y m e n t s t a t u s o f t h e s e c l i e n t s d o c u m e n t e d , h o w e v e r A n t h o n y , H o w e l l and D a n l e y  (1988)  i s not  well  (1984) p o i n t  o u t t h e d e p e n d e n c e on s u p p o r t s y s t e m s c a n be h e a l t h y i n t h a t r e l i a n c e i n one  a r e a such as s u p p o r t i v e l i v i n g  enhance t h e c l i e n t s ' involvment.  functioning i n their  T h i s appeared  p a r t i c i p a n t s i n t h i s study.  situation  can  vocational  t o be t h e c a s e w i t h some B e i n g a b l e t o r e l y on  supported  187 h o u s i n g seemed t o i m p r o v e  t h e i r o p p o r t u n i t y t o work.  U n f o r t u n a t e l y t h e r e a p p e a r t o be no f o r m a l s t u d i e s  measuring  t h e r e l a t i o n s h i p b e t w e e n h o u s i n g , f i a n c i a l a s s i s t a n c e and employment The  status.  a v a i l a b i l t y o f o t h e r s u p p o r t s , such as  job-finding  c l u b s , a l s o seemed t o i n f l u e n c e w o r k e x p e r i e n c e . had  Those  a c c e s s t o t h e m f o u n d t h e m t o be v e r y h e l p f u l .  f i n d i n g c l u b s , as o r i g i n a l l y d e v e l o p e d colleagues  ( A z r i n & B e s a l e , 1980;  been i d e n t i f i e d as f r u i t f u l obstacles  (Bellak,  1989).  K r e i n b r i n g , P o n d e r and  by A z r i n  In particular,  Simpson  Job-  and  Azrin & Phillip,  f o r overcoming  who  1979)  have  employment Jacobs  , Kardahian,  (1984) r e p o r t t h a t j o b - f i n d i n g  c l u b s a r e e f f e c t i v e f o r i n d i v i d u a l s w i t h s c h i z o p h r e n i a who have been unemployed f o r l e n g t h y p e r i o d s . Other  s u p p o r t s t h a t i n f l u e n c e d many p a r t i c i p a n t s '  e x p e r i e n c e s w i t h i l l n e s s , w o r k and clubhouses, The  purposes  c o p i n g e x p e r i e n c e s were  s u p p o r t e d w o r k p r o g r a m s and p e e r s u p p o r t and  e f f e c t i v e n e s s o f c l u b o u s e s and  work programs i s w e l l documented S t o r z b a c h & R o s e , 1990; group mentioned  (Kuehnel,  T o r r e y , 1988).  supported  Liberman,  However, t h e  by s e v e r a l p e o p l e i s n o t a b l e and  further discusssion.  started.  The  r e g u l a r b a s i s t o d i s c u s s concerns support.  peer  deserves  A s d e s c r i b e d i n t h e a c c o u n t s , two  t h e p a r t i c i p a n t s were a c t i v e l y i n v o l v e d i n a peer g r o u p t h a t t h e y had  groups.  I n a d d i t i o n , two  support  s m a l l g r o u p o f men and  met  o f f e r companionship  female p a r t i c i p a n t s  of  expressed  on  a  and  188 i n t e r e s t i n p a r t i c i p a t i n g i n a peer group. these  people mentioned peer support  The  groups i s not  p a r t i c u l a r l y noteworthy.  Peer support  much o f t h e  For example, i n t h e i r  literature.  book, K u e h n e l , L i b e r m a n , S t o r z b a c h describe s e v e r a l peer support colleagues and  and  has  Rose  programs.  in  f o r f a m i l i e s and  a list  o f n a t i o n a l and  clients.  itself  r u n s o l e l y by  a r e l a t i v e l y new  (1990)  Also, Jeffries  and  groups  i n t e r n a t i o n a l groups  Peer support  individuals with  phenomenon.  in  resource  What i s n o t e w o r t h y i s t h a t  p e o p l e i n i t i a t e d t h e g r o u p on t h e i r own. e s t a b l i s h e d and  that  been d e s c r i b e d  (1990) s a y t h a t t h e y know o f many s u p p o r t  they provide  seem t o be  fact  Vine  these groups  schizophrenia and  Beels  (1990) e x p l a i n t h a t t h e y know o f o n l y two s e l f - h e l p organizations s p e c i f i c a l l y organized from s c h i z o p h r e n i a : Schizophrenia Schizophrenic  Fellowship.  been o r g a n i z e d They add,  "we  f o r people s u f f e r i n g  Annonymous and  They n o t e t h a t t h e s e  the groups have  f o r r a t h e r t h a n by s c h i z o p h r e n i c p a t i e n t s . h a v e no  e x a m p l e o f w h a t an o r g a n i z a t i o n made up  of p r i m a r i l y s c h i z o p h r e n i c p a t i e n t s would look l i k e " So  (p.393).  i t i s i n t e r e s t i n g t o d i s c o v e r the e x i s t e n c e of such  a  group. Regardless  o f whether p a r t i c i p a n t s were i n v o l v e d i n  c l i e n t or p r o f e s s i o n a l i n i t i a t e d peer groups, the value s u c h g r o u p s was c l u b h o u s e , day provided  evident.  of  Whether a t t e n d i n g p e e r groups a t  a  p r o g r a m o r someone's home, s u c h g r o u p s  an o p p o r t u n i t y t o i n t e r a c t w i t h o u t  having  to  pretend  189 to  be  "normal."  success  V i n e and  of peer-support  Beels  (1990) p o i n t o u t t h a t  g r o u p s s t e m s f r o m t h e ways i n w h i c h  t h e y h e l p members t r a n s c e n d an i s o l a t i o n i m p o s e d by illness. groups,  the  the  G a r t n e r and R e i s s m a n (1982) w r i t e t h a t , i n t h e s e the i n d i v i d u a l i s not  that provides support,  i s o l a t e d but  feedback  i s p a r t of a group  and r e i n f o r c m e n t .  They  add  t h a t t h e s e g r o u p s p r o v i d e a p e r s p e c t i v e on o n e ' s p r o b l e m s , a t t i t u d e s o f o t h e r s and t h e way  one  may  respond.  Another p o i n t t o consider i s the r o l e t h a t peer groups c o u l d p l a y i n h e l p i n g c l i e n t s l e a r n coping  support  strategies.  Several p a r t i c i p a n t s indicated interest i n helping other individuals illness.  "new"  t o the experience t o l e a r n about  C o h e n and  Berk  (1985) b e l i e v e t h a t c l i e n t s s h o u l d  encouraged t o emulate the coping s t r e n g t h s of functioning clients.  the  P e r h a p s one  format  for  higher "experienced"  i n d i v i d u a l s t o share t h e i r coping s t r a t e g i e s w i t h c l i e n t s i s the peer support  be  "new"  group.  A f i n a l p o i n t t o make i n r e l a t i o n t o t h e p e e r  support  g r o u p s i s t h a t t h e p a r t i c i p a n t s r e f e r r e d t o them i n t e r m s o f t h e i r usefulness f o r coping with the o v e r a l l experience. for  for  T h e y a l l u d e d t o t h e i n d i r e c t h e l p t h a t was  work e x p e r i e n c e  work.  illness  b u t t h e g r o u p f o c u s was  not  U n f o r t u n a t e l y the r o l e of peer support,  work e x p e r i e n c e ,  literature.  given  specifically, specifically  i s not w e l l documented i n t h e  190 T h e r e i s some d i s c u s s i o n i n t h e  l i t e r a t u r e of  the  s t r a t e g i e s r e q u i r e d t o make a v a i l a b l e t h e n e c e s s a r y supports.  A n t h o n y , H o w e l and  m o d i f i c a t i o n and  Danley  (1984) c a l l  c r e a t i o n o f community r e s o u r c e s  m e e t i n g the needs of t h i s p o p u l a t i o n to f i t the  client  c l i e n t ' s needs. reverse  for  the  toward  away f r o m s t r u g g l i n g  i n t o t h e p r o g r a m t h a t do  n o t meet  the  C o h e n (1984) s a y s t h a t i t i s i m p o r t a n t  the trend that requires the  the workplace.  and  community  He  w r i t e s t h a t , as  schizophenic i t does w i t h  to adjust  schizophrenia.  jobs  and  For  hours.  and  Further,  consultants.  he  for f l e x i b i l i t y  suggests i n c e n t i v e s to  are  colleagues  (1990) w r i t e t h a t ,  i n d i v i d u a l d e p e n d s on a w h e e l c h a i r ,  sidewalk  ramps t o e x e r c i s e  t r a n s i t i o n a l e m p l o y m e n t and Thus, i n terms of the o f l o o k i n g f o r and  independence,  sheltered  s o c i a l context  keeping a job,  schizophrenia  negative  s t i g m a and  are d e a l t .  of the  experience.  mentally  experience the  i n which people  sense, s o c i a l  i n a d e q u a t e c o m m u n i t y s u p p o r t s may  i n f l u e n c e on t h e  hydraulic  clubs,  i t i s clear that  I n one  just  workshops.  e x p e r i e n c e i s v e r y much i n f l u e n c e d by t h e way  such as  less  encourage  disabled individuals require self-help social  with  in  on-site psychiatric c l i n i c a l  L i b e r m a n and  a paraplegic and  client  c a n w o r k o n l y a l i m i t e d number o f  businesses to provide  lifts  calls  a w i l l i n g n e s s t o a c c e p t c l i e n t s who  productive  as  e x a m p l e , he  to  other  d i s a b l e d g r o u p s , t h e w o r k p l a c e must accomodate t o t h e with  to  In contrast,  aspects have a support  191 i n t h e form of understanding  and p r o v i s i o n o f r e s o u r c e s  may  have a v e r y p o s i t i v e impact. Long-term I l l n e s s Long-term I l l n e s s  Context  Experience  As p r e v i o u s l y d i s c u s s e d ,  i t appears t h a t t h e  o f o b t a i n i n g and r e t a i n i n g work f o r p e o p l e w i t h i s best viewed w i t h i n the context schizophrenia  i s a long-term  schizophrenia  of the r e a l i t y  illness.  experience  that  The f a c t t h a t t h e  p a r t i c i p a n t s were e x p e r i e n c i n g a l o n g t e r m i l l n e s s their  life  i n general  and work i n p a r t i c u l a r .  influenced  I t influenced  t h e work p a t t e r n , meaning o f work, and c o p i n g s t r a t e g i e s . Before it  proceeding  i s important  w i t h d i s c u s s i o n of the long-term  t o e x p l a i n why  "long-term"  context,  as opposed t o  " c h r o n i c " i s t h e word chosen t o d e s c r i b e t h i s c o n t e x t . Zubin  As  (1987) a r g u e s , i t i s i n a p p r o p r i a t e t o a p p l y t h e t e r m  " c h r o n i c " because a c e r t a i n percentage recover i l l n e s s a f t e r a period of time.  Goldman  from t h e  (1984) w r i t e s  a p p l y i n g the term "chronic" obscures the heterogentiy p o p u l a t i o n and i m p l i e s h o p l e s s n e s s deterioration.  Nevertheless,  of the  and i n e v i t a b l e  i t c a n be c o n s i d e r e d  t e r m i l l n e s s , b e c a u s e most p e o p l e e x p e r i e n c e several  that  a  long-  symptoms f o r  years.  The l o n g - t e r m  nature  of the i l l n e s s  seems t o h a v e  i n f l u e n c e d t h e p a r t i c i p a n t s ' work r e c o r d . e x p e r i e n c i n g an acute  i l l n e s s w i t h one  Rather  than  short-term  i n t e r r u p t i o n i n work, most o f t h e p a r t i c i p a n t s e x p e r i e n c e d  192 many i n t e r r u p t i o n s i n w o r k . lengthy  periods  As w e l l ,  several  o f unemployment. O t h e r s t u d i e s  D a l i s o n & Wing, 1966; B l e u l e r , 1978; H a l l , 1966;  experienced ( B r o w n , Bone,  Smith & Shimkunas,  M c G l a s h e n , 1 9 8 4 ; Simmons, 1965) h a v e d e m o n s t r a t e d  similar findings. A n o t h e r a s p e c t o f t h e l o n g - t e r m p a t t e r n o f w o r k was t h a t p a r t i c i p a n t s w o r k e d a t many u n r e l a t e d t y p e s o f j o b s . Watts  (1983) w r i t e s , a r e l e v a n t a s p e c t o f o c c u p a t i o n a l  stability  i s t h e p u r s u i t o f an o r d e r l y c a r e e r w i t h i n a  c e r t a i n occupation.  I t i s t h e r e f o r e i n t e r e s t i n g t o note  each p a r t i c i p a n t i n t h i s study jobs.  As  Unfortunatly,  reference  h e l d many d i f f e r e n t t y p e s o f  the current  l i t e r a t u r e makes  t o t h e t y p e s o f j o b s h e l d by p e o p l e  schizophrenia  that  i n the population  little  with  at large.  A f o u r t h a s p e c t o f t h e l o n g - t e r m p a t t e r n of, w o r k was t h a t p a r t i c i p a n t s changed employment a m b i t i o n s . individuals percieved  a d e c r e a s e i n employment  Some opportunites  as t i m e went by and t h e y sometimes h a d t o d e c r e a s e ambitions.  S i m i l a r i t y between t h i s f i n d i n g and t h a t o f  Brown, Bone, D a l i s o n and Wing be  t h e case i n general.  experience The  (1966) s u g g e s t s t h a t t h i s  That i s , t h a t these  may  clients  a decline i n occupation.  accounts revealed  t h a t t h e r e were  p s y c h o l o g i c a l and f i n a n c i a l r e p e r c u s s i o n s patterns.  their  Some p e o p l e i n t h e s t u d y  emotional, from t h e s e work  expressed f e e l i n g s of  embarrassment, discouragement, and d i s a p o i n t m e n t r e l a t e d t o  193 t h e i r work h i s t o r y . those of other  Again, these f i n d i n g s are  studies.  W e s t e r m e y e r and  similar to  H a r r o w (1987)  t h a t p r o l o n g e d u n e m p l o y m e n t c a u s e d f r u s t r a t i o n and of worthlessness i n t h e i r p a r t i c i p a n t s . that  subjects  o f h i s s t u d y and  be the  magnified  i n people with  otherwise poor coping stress.  He  schizophrenia  e f f e c t s may owing t o  heightened  In a d d i t i o n to the work-related  i l l n e s s a f f e c t e d the  i d e n t i t y and  p a r t i c i p a n t s i n t h i s study. about being  " s i c k p e r s o n s " who  could  be  their  problems,  They e x p r e s s e d  feel  reaction  self-esteem  of  can  i n many o f  that i s , they  adds t h a t t h e  s k i l l s and  Bellack  the r e s u l t i n g poverty  same ways i t a f f e c t s n o n - p a t i e n t s ; frustrated.  a major  lives.  expected to a f f e c t people with schizophrenia  a n g r y and  writes  i t contributed  s u b s t a n t i a l l y t o the poor q u a l i t y of t h e i r (1989) w r i t e s t h a t u n e m p l o y m e n t and  feelings  Lehman (1983)  i n a b i l i t y t o - o b t a i n a d e q u a t e e m p l o y m e n t was  problem f o r the  report  to  long-term  some  concerns  contribute  little  to  society. T h e s e l o n g - t e r m e f f e c t s on identity  e f f e c t s on  (Jacobs, (Hafez,  self-esteem  i n t u r n a f f e c t e d t h e meaning of work.  i n d i c a t e d t h a t w o r k was  life.  finances,  finances,  identity,  self-esteem,  and  and  purpose  identity  benefits  Jacobs, 1988), b e n e f i t s  (Brown, B o n e , D a h l i s o n  of  benefits  Westermeyer & Harrow, 1987), s o c i a l  F r a n k & D o c h e r t y , 1990;  self-esteem  Participants  meaningful i n terms of the b e n e f i c i a l  Other s t u d i e s have i d e n t i f i e d f i n a n c i a l 1988;  and  & Wing,  to 1966;  194 H a f e z , F r a n k & D o c h e r t y , 1990; H a r r o w , 1 9 8 7 ) , and (Hafez,  schizophrenia. particularly  two  important  provides  f o r people with schizophrenia  and  of Olshansky's  self-esteem.  identity.  issue.  H u r s h and  T h u s i t may  f u r t h e r comment s h o u l d I t should  s e l f - e s t e e m was  over the  long  Anthony  (1983)  (1969) o b s e r v a t i o n t h a t w o r k and  this  be t h a t , f o r p e o p l e w i t h  s c h i z o p h r e n i a , work i s p a r t i c u l a r l y One  are  Participants  a means o f s h e d d i n g o n e ' s p a t i e n t h o o d  improves self-esteem.  significant.  be made i n r e l a t i o n t o  or f o r t i e s .  i n c r e a s e d t h r o u g h work p e r c e i v e d  menial  j o b s had  on  as  worthy.  someone i n t h e i r  study  (1980),  they  t h e p o i n t b r o u g h t o u t by t h e p a r t i c i p a n t s o f  t h a t n o t a l l work i s e q u a l  that caution should  i n t h i s regard.  w o r k may  e s t e e m when t h e  this  I t seems  be u s e d i n m a k i n g b r o a d comments a b o u t  t h e esteem b o o s t i n g e f f e c t of work. people,  but  that  thirties  Some s t u d i e s , s u c h a s t h a t o f M a t t h e w s  d e m o n s t r a t e t h a t work i n c r e a s e s s e l f - e s t e e m , overlook  this  be n o t e d t h a t s e v e r a l p a r t i c i p a n t s f o u n d  Several p a r t i c i p a n t s described the demoralizing e f f e c t minimum wage and  are  have  i m p a c t t h a t s c h i z o p h r e n i a had,  self-esteem  r e m i n d us  do n o t  benefits  life  m a i n e m p l o y m e n t b e n e f i t s t h a t seemed  a f f e c t i n g i d e n t i t y and  t e r m , on  purpose of  Many o f t h e s e  d e s i r e d by p e o p l e who The  emphasized the  Westermeyer &  b e n e f i t s f o r s t r u c t u r e and  Frank & Docherty, 1990).  s i m i l a r to those  those  W a t t s , 1983;  As  i s t h e c a s e w i t h most  only prove e f f e c t i v e f o r i n c r e a s i n g s e l f i n d i v i d u a l p e r c e i v e s t h e w o r k t o be  worthy.  195 These b e n e f i t s d e r i v e d participants' motivation t o w o r k was h i g h  f r o m w o r k seemed t o i n f l u e n c e t h e  t o f i n d and keep a j o b .  Motivation  f o r p a r t i c i p a n t s i n t h i s study despite the  employment d i f f i c u l t i e s e x p e r i e n c e d .  This high motivation t o  w o r k i s i n c o n t r a s t t o t h e f i n d i n g s o f some s t u d i e s .  For  e x a m p l e , many ( 4 9 . 2 %) o f t h e p a r t i c i p a n t s o f S e r b a n a n d Thomas's (1974) s t u d y f e l t t h a t w o r k was o f n o s i g n i f i c a n t value  i n community a d j u s t m e n t .  however, s u b j e c t s  I n most o t h e r  studies,  i n d i c a t e d e s i r e and m o t i v a t i o n  t o work.  L i b e r m a n , M u e s e r , W a l l a c e , J a c o b s a n d Eckman (1990) that, contrary experince  t o common s t e r e o t y p e s  of being  and m i s c o n c e p t i o n s , t h e  c h r o n i c a l l y unemployed i s h i g h l y  to individuals with psychiatric disorders. 500 Linn  write  c l i e n t s with chronic mental i l l n e s s ,  aversive  I n a survey of  Lehman, Ward a n d  (1982) f o u n d t h a t t h e l a c k o f w o r k was o n e o f t h e  greatest  f a c t o r s r e l a t e d t o poor q u a l i t y o f l i f e .  r e p o r t t h a t even c h r o n i c a l l y impaired  p a t i e n t s s u p p o r t e d by  government p e n s i o n s had n o t r e l i n q u i s h e d t h e i r for a job.  They  aspirations  In fact their subjects' d i s s a t i s f a c t i o n  with  u n e m p l o y m e n t a n d l e i s u r e t i m e was s i g n i f i c a n t l y g r e a t e r t h a t o f a c r o s s - s e c t i o n o f t h e normal  than  population.  L o n g - t e r m i l l n e s s a l s o h a d an a f f e c t on t h e participants'  coping  of t h e i l l n e s s ,  strategies.  Over t h e l o n g - t e r m  p a r t i c i p a n t s developed various  s t r a t e g i e s s u c h a s u s e o f hope and o p t i m i s m . p a r t i c i p a n t s s a i d t h e y were h o p e f u l  course  coping Some  and o p t i m i s t i c t h a t  they  196 w o u l d g e t b e t t e r a n d w o u l d be a b l e t o w o r k a n d i m p r o v e employment s t a t u s .  W h i l e hope and o p t i m i s m a r e o f t e n  d e s c r i b e d as coping s t r a t e g i e s f o r people w i t h physical illness,  their  long-term  t h e y a r e much l e s s f r e q u e n t l y  w i t h p e o p l e a f f e c t e d by s c h i z o p h r e n i a .  Only a few  p r o f e s s i o n a l s such as H a f e z , Frank and D o c h e r t y S t r a u s s , H a r d i n g , Hafez and Lieberman  associated  (1990)  (1987) w r i t e a b o u t  and o p t i m i s m a s a c o p i n g s t r a t e g y f o r t h i s group N e v e r t h e l e s s , some i n d i v i d u a l s ,  and hope  of c l i e n t s .  such as those i n t h i s  s t u d y , a n d t h o s e who h a v e w r i t t e n p e r s o n a l a c c o u n t s o f t h e illness  i d e n t i f y t h e v a l u e o f hope and o p t i m i s m .  Lovejoy  (1985), diagnosed as h a v i n g c h r o n i c s c h i z o p h r e n i a , d e f i n e s hope as an e s s e n t i a l element emphasises  i n the recovery process.  She  t h e i m p o r t a n c e o f i n s t i l l i n g hope f o r r e c o v e r y i n  s t a f f and c l i e n t s . need t o i n s t i l l  I t i s i n t e r e s t i n g t h a t she i d e n t i f i e s t h e  hope i n s t a f f as w e l l as c l i e n t s .  Itis  known t h a t s t a f f who w o r k w i t h c l i e n t s w i t h l o n g - t e r m m e n t a l i l l n e s s a r e o f t e n f r u s t a t e d by t h e c l i e n t s ' t o improve  (Menninger,  1984).  seeming  failure  I t seems t h a t more r e s e a r c h  a n d d i s c u s s i o n o f t h i s c o n c e p t w o u l d be b e n e f i c i a l i n r e l a t i o n t o b o t h c l i e n t s and h e a l t h c a r e w o r k e r s . There  i s c e r t a i n l y evidence that i t i s appropriate t o  l i n k hope w i t h s c h i z o p h r e n i a .  Many s t u d i e s h a v e c h a l l e n g e d  the c l a s s i c a l view of s c h i z o p h r e n i a as i n e v i t a b l y an u n f a v o r a b l e i r r e v e r s i b l e c o u r s e  involving  (Harding, Brooks,  197 Ashikaga, Strauss 1987; by  & Landerl  1987;  Tsuang, Woolson & Fleraming,  B l e u l e r (1974),  & Linz  Ciompi  (1986),  Harding, Zubin & 1979. and  Strauss,  Longitudinal  Huber, G r o s s ,  studies  Schuttler  (1980) i n d i c a t e t h a t t h e r e a r e g r o u n d s f o r o p t i m i s m  regarding  the  l o n g - t e r m outcome o f s c h i z o p h r e n i a  only a s m a l l percentage of c l i e n t s demonstrate a downhill course.  and  that  progressive  For example, Huber, Gross & S c h u t t l e r  (1980) f o u n d f a v o r a b l e end  r e s u l t s i n 56 p e r c e n t  and  Ciompi  (1986) f o u n d f a v o r a b l e end  r e s u l t s i n 49 p e r c e n t  of  clients  with schizophrenia. trend  As  Ciompi  i n outcome i s r e m i s s i o n  (1986) w r i t e s , t h e  rather than c h r o n i c i t y .  Brenner, Gerstner,  Keller,  late recuperations  a r e p o s s i b l e and  are  M u l l e r and  Spictig  f i r s t d e c a d e and  stabilize.  (1988) a l s o d i s c u s s e s  Torrey  w r i t e s t h a t a p e r s o n who may  (1974)  process i s  issue  says t h a t with schizophrenia  60's  many p e o p l e f e e l q u i t e g o o d  25  50.  g e t w o r s e w i t h t i m e and  He  become  this  t h e c a s e ; i t w e a k e n s i t s h o l d on p e o p l e i n t h e i r  u s u a l l y by t h e i r  to and  h a v e o n l y r e s i d u a l t r a c e s o f t h e symptoms a t age  more d e b i l i t a t i n g , and  whole  t h e r e a f t e r tends this  that  i s s e v e r e l y i n c a p a c i t a t e d a t age  r e m i n d s us t h a t most i l l n e s s e s  not  Bleuler  i s evidence that the disease  most a c t i v e i n t h e  Boker,  (1984) s a y  p r o g n o s e s on t h e  f a r b e t t e r t h a n p r e v i o u s l y assumed.  writes that there  general  is  40's  and  (Torrey  1988) . This trend toward remission  seems t o be  evident  course of i l l n e s s f o r s e v e r a l p a r t i c i p a n t s i n t h i s  in  the  study.  198 W h i l e e a c h p e r s o n ' s c o u r s e o f i l l n e s s was p a r t i c i p a n t s accounts revealed  reasons.  t h e i r work s t a t u s had This  i l l n e s s may  objectives.  As  these people found  improved as t h e i r  McClelland  Bridge,  Linz  C a n n o n , and  illness  ( 1 9 8 0 ) , P f o h l and  be  exercised  s o c i a l therpy abilities.  Winokur  lead to exessive  w i s h e d she  t h a t many p e o p l e w i t h  (1982),  had  on  i s not  known when s h e  schizophrenia  are  a d d e d t h a t she  were j u s t j u s t r e c e n t l y i l l  or  clients' always  i s room f o r h o p e . As  one  f i r s t got  eventually  s a i d t h a t t h i s k n o w l e d g e would have g i v e n She  Huber,  caution  pressure  Second, as t h e c o u r s e o f i l l n e s s  sense of hope.  and  (1978) h a v e i m p l i c a t i o n s f o r  increasingly d e b i l i t a t i n g , there  w o r k . She  later  i n i m p l e m e n t i n g forms o f employment  w h i c h may  p e r s o n s a i d , she  that  e a r l y and  management, i n t h a t , i n t h e e a r l y a c t i v e p h a s e , should  wanted o t h e r  ill  able her  people  t o r e a l i z e t h a t many who  to some who  do  get  better. T h e r e i s some r e c o g n i t i o n o f t h e schizophrenia  long-term impact  i n employment r e h a b i l i t a i o n .  acknowledged t h a t ongoing support, t r a i n i n g , s o l v i n g a r e more a p p r o p r i a t e discharged  clients  to  remitted.  (1986) w r i t e s , f i n d i n g s by  Wyatt  they  i s important  involve e n t i r e l y d i f f e r e n t goals  G r o s s , S c h u t t l e r and and  First,  This  s u g g e s t s t h a t employment g u i d a n c e i n t h e  years of  several  t h a t , as t h e y grew o l d e r ,  e x p e r i e n c e d some i m p r o v e m e n t i n h e a l t h . a c k n o w l e d g e f o r two  unique,  than simple  ( B e l l a c k 1989).  of  It is and  problem  job placement  Anthony, Howell  and  of  199 Danley  (1984) s a y  schizophenia  that, l i k e people with diabetes,  need l o n g - t e r m s u p p o r t .  h e a l t h p r o f e s s i o n a l s m u s t do c o n t i n u i t y of care clients.  G r u e n b e r g and  fragmentation  Archer  be  are  because there  M a s s e l and  capacity may  be  of s e r v i c e s f o r these  (1983) c a l l  can  i s no  colleagues  filling be  needed t h r o u g h o u t the c l i e n t s  As  ensuring  for less long-term  They w r i t e t h a t f r a g m e n t i n g o f t r e a t m e n t  l a r g e number o f p e o p l e who  inappropriate  a b e t t e r job of  coordination  with  They i n d i c a t e t h a t  i n the treatment of c l i e n t s w i t h  mental i l l n e s s . a  and  those  by  specialized roles i s  no p r e d i c t i o n o f w h a t  long-term course of  (1990) p o i n t o u t ,  current  i n d i c a t o r o f f u t u r e work c a p a c i t y ,  s u b s t a n t i a l change i n t h e c l i n i c a l  illness. work  as  course.  will  there  Because  this,  long-term i n t e r v e n t i o n i s warranted f o r a l l c l i e n t s  with  schizophrenia.  of  Summary It  i s c l e a r from the p a r t i c i p a n t s  1  accounts that  an  u n d e r s t a n d i n g of each i n d i v i d u a l ' s i l l n e s s experience i s e s s e n t i a l t o understanding the r e t a i n i n g work.  I n d e e d t h i s may  understanding these c l i e n t s ' education, diagnosis  and  s o on.  Yet  of schizophrenia  experience of o b t a i n i n g be  true i n relation  who  (1985) d e s c r i b e s ,  i t o f t e n seems t h a t o n c e i s made, t h e  lumped t o g e t h e r  shares the diagnosis.  to  experiences with r e l a t i o n s h i p s ,  individual  a u t o m a t i c a l l y viewed through a stereotyped Walsh  and  the is  l e n s , and  w i t h everyone  T h e r e seems t o be  i s , as else  a tendency  for  200 \  h e a l t h p r o f e s s i o n a l s t o want t o u n d e r s t a n d t h e i l l n e s s has  that  t h e person r a t h e r than t h e person t h a t has t h e i l l n e s s .  While the general  and v o c a t i o n a l r e h a b i l i t a t i o n  advocates i n d i v i d u a l i z e d care, extent  literature  i t i s d i f f i c u l t t o know t h e  t o which t h e w r i t t e n word i s c a r r i e d i n t o p r a c t i c e .  Another i s s u e a r i s i n g from t h e p a r t i c i p a n t s • a c c o u n t s i s the  impact o f stigma.  I t seems t o be one o f t h e m a j o r  i n f l u e n c e s on t h e p a r t i c i p a n t s ' work e x p e r i e n c e . there  a p p e a r s t o be l i t t l e  reference  However,  t o t h i s concept i n the  vocational rehabilitation literature.  P r o f e s s i o n a l s and  c l i e n t s seem t o assume t h a t s t i g m a h a s a n e g a t i v e the  behavior o f employers towards people w i t h  Studies negative  provide  i m p a c t on  schizophrenia.  some e v i d e n c e t h a t t h e p u b l i c h a s a g e n e r a l l y  a t t i t u d e towards people w i t h  schizophrenia.  N o n e t h e l e s s , t h e r e s u l t s o f t h i s and o t h e r  studies  d e m o n s t r a t e t h a t many e m p l o y e r s a r e s u p p o r t i v e of people.  social  of t h i s  group  I t a p p e a r s t h a t t h e r e may be some m i t i g a t i n g  f a c t o r s t o i n f l u e n c e t h e employer response t o people schizophrenia.  with  However, whether o r n o t s t i g m a i s a c t u a l l y  experienced, i t i s apparent that c l i e n t s often a n t i c i p a t e i t . This  a n t i c i p a t i o n o f s t i g m a seems t o i n f l u e n c e b e h a v i o r i n  work and o t h e r  social situations.  I t i s therefore  imperative  t h a t h e a l t h p r o f e s s i o n a l o f f e r more s u b s t a n t i a l s u p p o r t i n regards t o t h i s area of c l i e n t  concern.  I n terms o f community s u p p o r t , t h e s t u d y f i n d i n g s c o n c u r with the literature discussions  on t h e e f f e c t i v e n e s s o f  s e r v i c e s such as j o b - f i n d i n g c l u b s , c l u b h o u s e s work programs.  W h i l e t h i s may  seem t o be a n  and  supported  obvious  c o n c l u s i o n , the key p o i n t i s t h a t , r a t h e r than  fostering  d e p e n d e n c e , r e l i a n c e on some c o m m u n i t y s u p p o r t s may independence i n c e r t a i n areas of f u n c t i o n i n g .  I t seems t h a t  i n terms o f work, p r o v i s i o n o f s u p p o r t s such as a s s i s t a n c e may work.  One  improve  increase  financial  the individual's opportunities to  of the e x c i t i n g supports mentioned  i s t h e peer support group.  by  participants  W h i l e t h e s e t y p e s of groups have  been i n e x i s t e n c e i n mental h e a l t h c a r e f o r a p e r i o d of time, t h e d e v e l o p m e n t o f p e e r g r o u p s r u n s p e c i f i c a l l y by and f o r i n d i v i d u a l s w i t h s c h i z o p h r e n i a i s q u i t e new. s u p p o r t g r o u p s i n employment g u i d a n c e clients  i s not w e l l d i s c u s s e d i n the l i t e r a t u r e .  t h e y may The  be u s e d  i n employment  use of  be  As  these  interesting to  e f f e c t s on e m p l o y m e n t , o f t h e l o n g - t e r m n a t u r e  The  responses  see  guidance.  s c h i z o p h r e n i a , a r e d o c u m e n t e d i n t h e l i t e r a t u r e and study.  peer  f o r t h i s group of  types of support groups evolve, i t w i l l how  The  of  in this  e f f e c t s on w o r k h i s t o r y and t h e p s y c h o l o g i c a l  t o e m p l o y m e n t e x p e r i e n c e s seem t o be w e l l known f o r  t h i s group of c l i e n t s .  These i n d i v i d u a l s o f t e n e x p e r i e n c e  much d i s r u p t i o n i n t h e i r e m p l o y m e n t r e c o r d and t h i s o f t e n leads t o f e e l i n g s of discouragement  and  disappointment.  Nonetheless, these c l i e n t s tend t o demonstrate m o t i v a t i o n t o work. throughout  high  Many m a i n t a i n a s p i r a t i o n s f o r e m p l o y m e n t  a l o n g and u n p r e d i c t a b l e c o u r s e o f  illness.  Despite the long-term nature of the i l l n e s s , e v i d e n c e t h a t many i n d i v i d u a l s  improve.  there i s  In relation to t h i  t h e r e i s s u p p o r t f o r t h e v i e w t h a t hope i s a r e a l i s t i c e s s e n t i a l v a r i a b l e t o c o n s i d e r i n terms o f employment guidance.