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Women who are HIV positive in the Lower Mainland : A survey of social support Brendle Moczuk, Iris 1995

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WOMEN WHO A R E H I V P O S I T I V E I N THE LOWER M A I N L A N D : A SURVEY OF SOCIAL  SUPPORT by  I R I S B R E N D L E MOCZUK B.Sc, B.S.W.,  The The  U n i v e r s i t y of  British  U n i v e r s i t y of  A T H E S I S SUBMITTED  British  Columbia, Columbia,  I N PARTIAL FULFILLMENT  THE REQUIREMENTS  FOR THE DEGREE  MASTER OF S O C I A L  OF  WORK  in THE F A C U L T Y OF GRADUATE S T U D I E S School  We a c c e p t to  of  this  Social  thesis  th^re^uired  THE U N I V E R S I T Y  Iris  conforming  standard  OF B R I T I S H  March (c)  as  Work  COLUMBIA  1995  B r e n d l e Moczuk,  1995  1989 1992 OF  In presenting this thesis in partial fulfilment  of the requirements for an advanced  degree at the University of British Columbia, I agree that the Library shall make it freely available for reference and study. I further agree that permission for extensive copying of this thesis for scholarly purposes may be granted by the head of my department  or  by  his or  her  representatives.  It  is understood that  copying or  publication of this thesis for financial gain shall not be allowed without my written permission.  Department The University of British Columbia Vancouver, Canada Date  DE-6 (2788)  Abstract This  study  examined  perceived  a  perceived  inadequacies  (n=17) staff  and at  lack  of  whether  living  three  social  a  survey  questionnaire  Scale  of  administered Statistical  or  status  to  related  illnesses  who h a d  been  with  clarify  that the  HIV/AIDS.  to  non-random  not  d i d not  to  or  perceive Overall  higher  more  exploratory of  than  social  only  sample.  was  for  either  support  Women w h o support  ratings  of  anticipated. research  support  for  self-  interview.  non-disclosure  less  A  Multidimensional  telephone  family.  were  meaning  a  found  disclosure  the  (MSPSS)  via  was  were  convenience  included  Support  asymptomatic.  support  suggest  service-providing organizations  which  but  these  by  conducted  friends,  areas  recruited  Social  with  i n what  positive  Mainland  Lower  significance  crosstabulated  HIV  HIV p o s i t i v e  cross-sectional,  Perceived  and  were  Women w h o w e r e  the  liaison  who  support,  existed.  in  provide  women  is  scores of  HIV  had HIV-  than  those  satisfaction The  results  necessary  women l i v i n g  to with  T A B L E OF CONTENTS  Abstract  i i  List  of Tables  List  of  v  Figures  v i  Acknowledgements  v i i  Introduction  1  Background L i t e r a t u r e  • •5  Social  Support  5  Social  Support  Theory  Social  Support  and C h r o n i c  9 Illness  11  Women L i v i n g w i t h H I V / A I D S  13  HIV/AIDS and S o c i a l  21  Support  Method  25 Study Design  25  Sample  • 26  Measures  32  Data A n a l y s i s  35  Results  37  Conclusion  51 Discussion  of Results  Implications  for  Research  51 59  Bibliography  64  Appendix A  74  Appendix B  78  Appendix  80  C  i i i  Appendix D  84  Appendix E  85  Appendix F  88  Appendix G  91  Appendix H  I l l  Appendix 1  115  Appendix J  116  Appendix K  118  Appendix L  120  iv  L I S T OF T A B L E S  Table  1:  Overview of Demographic  Table  2:  Relationship  Table  3:  MSPSS S c o r e b y H I V S t a t u s D i s c l o s u r e  Table 4:  Health for  Data  38  Status of Respondents  Status of  Women b y M e a n M S P S S  Each Category  40 43 Score 46  v  L I S T OF F I G U R E S  Figure  1:  Support  b y Mean S c a l e S c o r e o f  vi  Satisfaction  Acknowledgement s U p o n c o m p l e t i n g my t h e s i s w h i c h e x a m i n e s s o c i a l s u p p o r t , I w o u l d l i k e t o t h a n k t h e n u m e r o u s p e o p l e w h o p r o v i d e d me w i t h support throughout t h i s process. T h a n k s g o t o my a d v i s o r , D r . S h a r o n M a n s o n S i n g e r , f o r h e r e n t h u s i a s m , o n - g o i n g e n c o u r a g e m e n t , a n d i n s i g h t i n t o b o t h my subject area, and i n t o the experiences of graduate students, i n t a k i n g the time t o o r g a n i z e and f a c i l i t a t e (and even feed!) a graduate students' support group, Sharon p r o v i d e d g u i d a n c e , a n o p p o r t u n i t y f o r me t o l e a r n f r o m my p e e r s , and an a n t i d o t e to the i s o l a t i o n which thesis writing often brings. I w o u l d a l s o l i k e t o t h a n k my o t h e r thesis committee members, D r . R i c h a r d S u l l i v a n , P r o f e s s o r E l a i n e S t o l a r , a n d Dr. Robert Hogg, for their invaluable suggestions and recommendations. I c o u l d not have undertaken this research without the commitment and c o o p e r a t i o n of a number o f p e o p l e . I am indebted to the f o l l o w i n g people f o r the time and e f f o r t they put i n t o t h i s study: L o r i Sheckter and D r . Jack Forbes of the Oak T r e e C l i n i c , J u d y K r u e c k l o f S t . P a u l ' s H o s p i t a l , a n d t h e P o s i t i v e Women's N e t w o r k s t a f f a n d members. P a r t i c u l a r l y I want t o thank M a r c i e Summers f o r h e r w i l l i n g n e s s t o h e l p , a n d E v e l y n H i l d e b r a n d t , w h o t a u g h t me a l o t about the e x p e r i e n c e s o f women l i v i n g w i t h H I V / A I D S . . . M a n y t h a n k s a l s o go out t o s t a f f o f t h e V a n c o u v e r P e r s o n s w i t h AIDS S o c i e t y , AIDS V a n c o u v e r , and the C i t y o f V a n c o u v e r H e a l t h Department who p r o v i d e d me w i t h f e e d b a c k o n t h e q u e s t i o n n a i r e . N u m e r o u s c o l l e a g u e s w e r e v e r y e n c o u r a g i n g t o me my t h e s i s p r o c e s s , and t o them I w o u l d l i k e t o heartfelt thanks.  throughout e x t e n d my  I w a n t t o t h a n k my f r i e n d s K a r i n B r a u n a n d C h a r l e s H o h e n s e e f o r b e l i e v i n g i n me a n d n e v e r d o u b t i n g t h a t t h i s project w o u l d one day be c o m p l e t e d , and " J o a n i e " Moczuk f o r w a l k s t h a t helped put things i n t o p e r s p e c t i v e . My p a r t n e r D a n i e l l i v e d d a i l y w i t h t h e m a n y u p s a n d d o w n s I experienced throughout t h i s project. T o h i m g o my d e e p e s t thanks f o r h i s love and support, f o r outdoor getaways, and for the shared "student experience".  vii  INTRODUCTION  I n t h e A I D S c r i s i s , women a r e m o s t o f t h e t i m e completely invisible, face severe and sometimes insurmountable o b s t a c l e s t o coming o u t w i t h a p o s i t i v e HIV s t a t u s , have a l m o s t no r e s e a r c h done about them, have l i t t l e money, are r a r e l y provided w i t h adequate care, and have t o t a k e c a r e o f t h e most p e o p l e . ( C h r i s & P e a r l , 1 9 9 0 , p . 241)  The  needs  of  immunodeficiency society.  has  virus  (HIV)  the  i n services  Rehm,  who  Women h a v e  by H I V , as gaps  women  1987;  not  are  infected  have  been  r e c o g n i z e d as  male homosexual  1992).  publicity  women r e c e i v e d r e g a r d i n g  syndrome  (AIDS)  were  H I V was  about  1988;  women  history  of  This are  British  or  the  with  illness  (Hunter,  study  attempts  HIV p o s i t i v e  the  world  (Buckingham and the  only  seen  "vectors  i n f e c t i n g men i f  i f  1991).  as  they  were  Even recent  HIV focuses or  solely on  on  of they  mothers  information the  natural  its  implications  extent  to- w h i c h  for  1992). to  examine  and  Columbia perceive  throughout  being  i n women,  therefore  acquired immunodeficiency  children  Schneider,  living  reproduction  in  in  affected  and  recently,  of H I V : b l a m i n g them f o r  prostitutes,  (Lindhorst,  who  and  human  ignored  a group  community,  Until  the  been  f o r H I V p o s i t i v e women e x i s t  Novello,  transmission"  largely  with  in  the  live  they  are  numbers  1  in  the  Lower  supported.  greater  than  women  Mainland  in  A l t h o u g h women three  million  are  living  focus The  on  w i t h HIV and AIDS the  experiences  Lower M a i n l a n d  (Hankins, 1990),  of  women  encompasses  the  the  of  the  issues  city.  This  Social  life  support  with  are  has  the  been  1984).  psychosocial  the  need  perception  of  social  examined.  The  instrumental  or  of  the  assessing  support Kahn,  instrumental and  satisfaction will the  be  with  various  of  and  population w i l l  be  measurement  questionnaire,  discount as  various  the not  be  important well-being  HIV  infection  1989).  sources  support,  for  emphasized,  be  example in  favour type  support  of  (House &  may a l s o p r o v i d e e m o t i o n a l  support,  focus  on  types  regard  of  to  members  The  will  A particular  family  women  1990).  an  (Kaspar,  calling  provide  social  the  to  the  may  questions  The e x p e r i e n c e s  examined,  The  but  be  of  one f u n c t i o n o f  example,  support,  importance  from of  to  effect  perceptions.  more t h a n  reviewed with  illness. be  support  women's  effort  and p h y s i c a l  support  emotional, w i l l  For  therefore  social  components  may o f f e r 1985).  for  area.  telephone  elsewhere,  demonstrated  (Ell,  will  local  affected by HIV (Taylor,  i n determining psychological  emphasizes  local  HIV/AIDS  factor  The  one  study  of Vancouver, and  i s b y no means a n  o f women l i v i n g  from a l l walks of  this  city  surrounding m u n i c i p a l i t i e s within area  in  this  perceived support.  social  support  for  of  The  support people  o f women l i v i n g  importance  support,  with  social  or  literature theory,  with  chronic  HIV/AIDS  support  and  for  will this  considered. instrument  which  was  in  either  2  this  study  was  a  survey  self -administered,  or  conducted v i a a telephone for  the  study  organizations living  with  sample  was  via  interview.  professional  staff  i n Vancouver which HIV/AIDS.  This  non-random  in  Subjects  were  at  provide  three  services  cross -sectional  order  to  recruited liaison for  women  convenience  preserve  sample  size  (N=23) . The  involvement  research have  process  been  had been the  and  the It  been in  report  low  scores  standardized disclosed  the to  of  women w h o h a d  questionnaire.  gain a  that  t o be women  richer  support  were  than  who  are  scales.  services  predicted  those  who  was a l s o  as  medical  of  support limited.  the than  care or  anticipated. of  of  and  would  both  on  Women w h o h a d  not  to  have  lower  disclosed,  illnesses of  or  had  social  been  and AIDS  support  i l l . Income  child  care  were  inadequate.  Variability  a descriptive  3  group  interest  support  s u r v e y i n d i c a t e d much h i g h e r  The use  and  interpretation  had  lower perceptions  t o be n o n - s a t i s f a c t o r y  The r e s u l t s perceived  such  A focus  hypothesized  t h a n women w h o w e r e H I V p o s i t i v e a n d h a d n o t and  question  HIV p o s i t i v e  social  experienced HIV-related have  the  feasible.  perceived  HIV status  were h y p o t h e s i z e d t o  research  in  w i t h HIV  n u m b e r o f women e x p r e s s i n g  small  of  HIV p o s i t i v e Women l i v i n g  the  and non-standardized  their  perceptions  are  generating  although the  expected  who  emphasized.  i n order  g r o u p was t o o was  women  pretesting  planned  results,  in  has  involved  developing  of  level  ratings  in of  of  responses research  w i l l  be  discussed  methodological It  can  problem, work  be  said  been  Furstenberg knowledge  these and  is  The  key  well  a  in  between  of  the  documented  social  support  delivering for  racist  and  and  response, and  Lindhorst, needs  meaningful and  services,  classist  and  of  4  social to  community  or  response  to  Renaud,  women  19 8 9 ; With  a  living  with  i n cooperation  with  research,  developing  services,  i n educating  stereotypes  1990).  social  aiming  1988).  adequate and  a The  in  their  and  suggested.  are  s o c i a l work  involved,  accessible  support  research  (Bourgon  the  conducting  findings,  HIV i n f e c t i o n  people  c a n become  the  further  this  1984;  in  of  s o c i a l response.  Olson,  women,  (Shernoff,  and  importance  s o c i a l workers  sexist,  AIDS  and  of  advocating  for  require  congruency  environment.  HIV,  that  profession  has  light  considerations  and therefore  establish  AIDS  in  of  these  in  against women  BACKGROUND L I T E R A T U R E Social  Support  Social research many  support  literature  of  1970's  the  definitions  of  social  clarification  often  l i t t l e consensus  (1986),  and  social social using  Heller  support  and  measurement  therefore  to  conceptualization research  "an exchange  enhance ' the  number  such as:  l)  (generally, or  a  their  of  order  to  being  which  Barrera  criticized  for  It  is  social  facilitate  its  the  and  ambiguous. of  some  define  investigated,  are  and  1992),  1981).  clearly  spectrum  to  range,  functional  (1984)  resources  provider or  the of  the or  of  domain of  different existence  or  2)  the  the  content  instrumental  broadly define  between the  support  use  aspects  as  a  of  such as  of  of  the  tangible  5  intended  is  13).  used  relationships  presence  reciprocity) ;  aids,  refer  relationships,  social  (such  to  More  to  of  relationships  relationships or  be (p.  social of  support  two i n d i v i d u a l s  to  support  or quantity  presence  least  social  recipient"  social  structure  of  at  recipient  the  specifically,  partner) ;  concern,  & Baumann,  have  failing  examine the  well-being  specifically, a  proposed,  (Veiel  then,  term.  perceived by the  to  been  r  which are  in  Since  have  (1983)  science  1985).  (DiMatteo & Hays,  for  Shumaker and B r o w n e l l as  support  instruments  necessary  & Syme,  Swindle  concepts  origins in social  continues  research  support  its  (Cohen  conceptual with  has  (such  and  as  appraisal  friends  3)  as the  emotional support.  and i n f o r m a t i o n ) social  support  (1981)  and  concepts  are  instrumental and  offers  outlined  while  affect,  provides  have  1985).  These  further  by  Rook  been  emotional  trust  and  suggestions  Kahn and A n t o n u c c i interpersonal  by  House  Tangible,  deals  listening.  functional  defined  money,  support  a f f i r m a t i o n and feedback,  advice,  last  (1984) .  a i d i n c l u d e s m a t e r i a l goods,  services,  concern,  (House & Kahn,  labour,  or time  with  esteem,  Appraisal  support  and i n f o r m a t i o n a l  support  and i n f o r m a t i o n .  (1981)  transactions  define  which  social  support  i n terms  of  include  t h e e x p r e s s i o n o f p o s i t i v e a f f e c t o f one p e r s o n toward another, the a f f i r m a t i o n o r endorsement o f another person's behaviours, perceptions, or expressed v i e w s , and the g i v i n g of symbolic o r material a i d to another. (Kahn, 1979, p . 8 5 )  Cobb  ( 1 9 7 6)  proposes  three  esteem and network support, social  support  as  is  social  to  significant  concept  who  embeddedness,  have  and a  Barrera's  others  in  the  (1986)  presence network  of  concept,  appraisal  social  analysis,  with  concept,  social  the  these  people  ties  (such as  i n which are  have This  marital  individuals identified.  measures  what  support.  connectedness  6  of  environment.  support,  perceived social of  conceptualizes  that  subject  enacted  emotional,  The f i r s t  connections  their  do when t h e y p r o v i d e  The t h i r d  support:  and B a r r e r a  or  relationship  individuals  cognitive  social  second  of  three broad categories.  includes the  status),  areas  support, to  draws upon  others.  the  Caplan's  ( 1 9 7 9)  four  subjective tangible  an  appraisal  support"  opposed and  variations  to  the  social  of  and  support  of  The  and the  & Sarason, literature  support  used  i n an  between  review to  of  perceived  number  studies (1986)  notes  provide the  support  as  support"  measured  by  and  adequacy  of  with  support  are  (Sarason,  Levine,  adequacy  an  variables social  of  services  1988).  that  his life  relationship strain.  measures  and  support.  In  and  perceived  network  concludes  the  or  inverse  stressors,  evidence  stresses  support  and  social  life  (Cohen,  social  found  to  people  network of  that  literature  of  to  of  do  therefore Berkman's  "...it  is  not only  (19 8 5 )  necessary  move b e y o n d m e a s u r e s o f h o u s e h o l d c o m p o s i t i o n , p r e s e n c e  kin,  or  networks received support, the  social  that  the  responsivity  indirectly  which are  measures adjustment  support  (1991)  indicate  of  numerous Barrera  Schonfeld  "subjective  tangible  satisfaction  i n d i v i d u a l ' s support  social  of  psychological support",  "objective  perceived  suggests  do a s s e s s m e n t s  stresses,  form  the  1983).  than  of  encompass  Perceived a v a i l a b i l i t y  more a c c u r a t e l y  review  the  psychological support",  common m e a s u r e s o f p e r c e i v e d Basham,  support  in  "subjective  observer.  ties,  social  counterparts  "objective outside  of  group and  affiliation  support."  support or  person  by  the  are  as  adequate  (p.255). often  measures  Additionally, confounded  support  offered  experiencing  stress  7  being  of  of  social  measures  of  need  for  inappropriate  for  by  the  (Kessler,  1992).  Complications the  measures  being  (Schonfeld,  by  an  basically,  competency, Hays,  confounded  1991),  influenced more  i n measuring perceived support  as  by  characteristics  personal  and u s u a l  & Swindle,  (1982)  an  self-esteem,  in  need  Significant measures and  social  predictor social  been  of  least  (such as  has  psychological  (DiMatteo & Nadler  likely  size  of  level et  been  state  social  resulting in  between  such as  (Sarason  support  such  even  and  i t .  quantitative network)  depression  1983),  found  than  get  social  of  a l . ,  to  those  to  and  although  be  a  objectively  better measured  support.  For  the  broadly  purposes  defined  from  specific  from  services,  (such as as  found  or  r e q u e s t i n g h e l p may i m p a c t  relationships  support  likely  state,  Fischer,  unfortunately being  from  symptoms  are  coping style  1983).  that  characteristics  have  perceived  support  social  personal  anxiety  of  report  inverse  of  support  psychological  Whitcher-Alagna  most  of  individual's  Heller  individual's  psychological  perceptions  personality,  1981;  by  may s t e m  in  this  or  social  study,  two ways:  persons;  housing).  informal  of  and  Palmer support  as  perceived  as  may b e a  result  support  secondly,  as  perceived  support  of  possible of  be  perceived  and  focus,  will  as  (1992)  functional properties  support  firstly,  satisfaction with  actual  it  social  one's  names  these  two  extended- s o c i a l the for  support  basic  conditions categories  support.  will  emotional  h a v i n g ones  8  social  not  support  needs met,  The  be to  the be  while  tangible  or  support  information  services,  Measures  as w e l l  of  & Walker,  Zimet  Berkoff,  1990).  adequacy  of  These  support  The  this  questions  could  denote  discussed  shortly.  Social  social  (1992)  facilitate decrease  vulnerability  factor  in  has  conceptualized  to  to  (Dahlem, Dahlem,  Werkman  and  a  &  significant  to  be  mostly  " h e l p " i n some o f  in  as the  stress  this  hypothesis",  where  an  1985) .  well. study  the  Other will  be  is  1986).  1987).  to  be  of  coping  health  buffering  effect 9  the the  and  important well-  support  "buffering  take  effect  effects  well-being  might  have  assistance  social  negative  to  59).  and p h y s i c a l  One w a y i n w h i c h  moderates  (p.  an  to  and  Coping t h e o r i s t s  a form  explained via  support  events  disorders"  psychological  as  "has b e e n shown  life  demonstrated  support  individual's This  stressful  Payne & Jones,  (Thoits,  support  stress-related  been  social  accomplishes  Kahn,  the  regarding perceived  support  addressed  social  contributing to  ( E l l , 1984;  on  that  adjustments  support  stress  support  reports  Social  with  tangible  Support  appears  of the word  in  Support Theory  Lynch  being  use  family.  Farley,  family  support  formal  1991; Zimet,  Powell,  friends,  from  addressed  & McCabe,  Zimet,  of  although the  of  are  include questions  emotional,  variables  and  Perceived Social  from  nature  obtained  from f r i e n d s  1991; Kazarian 19 8 8 ;  may b e  support  Scale of  & Farley,  other.  as  perceived  Multidimensional Zimet  support  the  of  (House & form  of  increasing provide  an i n d i v i d u a l ' s  necessary  cognitively A  direct  resources,  reappraising the  further  suggests  motivation to  hypothesis,  that  social  or  assist  stressor the  support  of  (Lynch,  1992).  Antonovsky  (1979)  effects  of  "breakdown"  (ie.  functioning)  and enhance  McGough effects that  that  (1990)  causality  has  further  support  phenomenon's  Negative aspects Wortman report with  and that  stresses.  is  may E l l  The mechanisms  correlational  be  determined  a  stressors the  direct  and  to  social  provide  these  notes  between  the  also  by which  relatively unclear  social (McGough,  suggests  a r e l a t i o n s h i p between  As Green  (1993)  conclude of  the  well-being.  must a l s o be  considered.  a  these,  review  very  little  effects support 1990),  social  of  of  and  interactions  as  additional  attention  has  support.  affect  health  although  support  i n a review a r t i c l e ,  10  and  social  process  interactions  that  direct-  studies,,  (1983)  into  support  possible negative  notes  in  resistance  who e x p e r i e n c e n e g a t i v e  perceive  the  on  required  (19 8 5 )  (1984)  that  psychological  and Swindle  social  individuals  been g i v e n t o  s t i l l  of  of  provide  r e l a t i o n to h e a l t h and  Conway  others  to  Heller  research  individual  t h a t b o t h the b u f f e r i n g and  based  yet  and h e a l t h .  hypothesis"  coping.  cautions are  an  proposes  health  in  1992).  presence  impaired physical,  hypotheses  support  on  the  a problem,  individual  (Lynch,  strengthens  regardless  support  an  "direct-effects  manner,  social  deal with  are  research  and immunity.  social  support  has  been  shown t o  be  than  physical  well-being  the  question,  well-being health wider  which  support  the  or  theory  system, stress  and  living  the  that i f  the  particularly  role  i n women,  phenomenon.  women  with  support  Spiegel, patients  High  breast  (Vachon,  chronic  positive  1986),  illness  1984).  is  social  in altering  can  to  (Lynch,  impair  social  a  the  illness,  the  1992) . immune  support  mediates  impairment of  the  and  persons studies  draw upon  support  in  chronic  who  to  gain further  distress  appears  and  a  found  significantly  insight  lack  t o be  existing (1982)  illness,  have been  perceived  erode  11  support to  and there  were  good  biochemical  feasible  Funch and M e t t l i n  support  and  balance  on s o c i a l  l e v e l s of  post-operatively  professional  does  1984).  i n order  may  or  Illness  it  cancer  prompting  psychological  individual  may m o d u l a t e  literature  of  a  stress  support  w i t h HIV and AIDS,  examining  in  an  rather  in turn attracts  Hormonal  (Jemmot & L o c k e ,  limited  promote  instrumental  interacting  Support and Chronic  Due t o  91).  t o be  1993),  good h e a l t h ,  s u s c e p t i b i l i t y of  social  immune r e s p o n s e  Social  thought  therefore  a l . ,  adaptation which (p.  proposes  effects,  et  psychological  support  promotes  network?"  components  Stress  that  i n turn  have been  with  (Sarason  "Does good s o c i a l  vulnerability  this  associated  ease p s y c h o l o g i c a l  changes  via  more  support studied that  found  of  some  into  social evidence  (Bloom  &  mastectomy  social  positively  in  related  and to  psychological recovery. medical a  The  (1988),  concluded be  that  more  services. low  levels  likely the  of  more  eleven  social  study in  family  studies  support.  Positive  sources  appeared  participants  control  (Bloom,  adjustment  to  to  illness  found  useful  to  patients  in turn  patient  forms  of  to  cancer  support  (1991)  social  support influence  perceiving self terms  (1990), chronic  Bloom in  quality  their  study  illness,  perception family  & Yalom,  of  members, and  the  family  of  found  affect  1981).  and  social that  social  (Funch & M a r s h a l l ,  1983);  Taylor  Primono,  & Wood,  the  was  her  functioning,  and  12  Yates,  support  affirmation  greater  as  of  (Lichtman,  in  or  patients  positively  ways:  to  support.  Ruckdeschel  of  most  inadequate  the  breast  that  1987);  a n d mood improvement t h r o u g h p a r t i c i p a t i o n i n a s u p p o r t (Spiegel,  it,  she  avoiding  survival  of  research,  perceptions  19 8 2 ) ;  patients,  supportive  and  i n numerous  obtain  of  friends  relating  to  perception  appearing  than  namely  quantity  sources  rather  or  physical  postoperatively.  i n mastectomy  Blanchard,  i n v o l v e m e n t was r e l a t e d better  the  previous  and  ability  mastectomy  support,  than  support  McCaffrey,  from v a r i o u s the  from  of  to  support,  treatment  study  q u a l i t y of  inappropriate  reviewed and  her  review of  or  support  financial  perceived support  patient,  Nelles,  of  access  important  resulted  providing  or  in  the  In her  financial  was c i t e d i n r e l a t i o n t o  prosthesis  Northouse  and  importance  insurance,  desired  may  adjustment,  for  greater from  her  and  women the  Woods during  woman's  partner  self-reported the  group  lower her  and  marital illness  demands  and  depression.  Women L i v i n g w i t h The  links  function people notes men,  between  who a r e that  additional social  caregiver, Smeltzer positive  was  w i t h HIV are  due  to  the  after  presence  lives. the  are  This  role  themselves  Henderson  the  women onset  often poor, and  support,  were of of  these i f  i l l and  the  more  in  in  role  of  the  1989;  reports  hospital.  likely  than  chronic illness.  that  supports  may are  did  unless  Robinson men  to  be  Women i n f e c t e d  c o l o u r and uneducated factors  for  women  i l l (Kaspar, (1992)  the  need  of  in  of  an i l l HIV p o s i t i v e p a r t n e r  seriously  that  1991), to  even  to  social  (1992)  H I V p o s i t i v e may h a v e  themselves  1991).  Lynch  for  than  their  find  support  1990).  more  immune  e v e n r e a l i z e how much t h e y w e r e d o i n g ,  abandoned a f t e r  access  be  often  women l o o k i n g  found  Gibson,  they  & Whipple,  partner  (1988)  may  social  and  support  due  HIV i n  even when t h e y  themselves  the  of  support  where  may u s e  support  stressor  of  (McGough,  women who a r e  for  well-being,  importance  women i n g e n e r a l  needs  society,  the  support,  HIV p o s i t i v e  and therefore  more  social  highlight  greater  not  HIV/AIDS  affect  (Stuntznerthe  available  women's to  begin  with. Very women  l i t t l e who  extensive  are  documentation  exists  HIV p o s i t i v e  literature  on  the  experiences  (Stuntzner-Gibson,  review  13  reveals  that  of  1991) .  An  virtually  a l l  available  literature  or  implications for  on i t s  also:  Hunter,  social lives as  and have  those  composite  social and  Kaspar,  Kaspar,  works- such  and as  (Manthorne, have  support  Palmer  having  were  from  in  AIDS  (1991).  on  for  review  of  women's  Women  research,  women  the  such  Beyond  the  (Rudd &  From f i r s t  An extensive  the  Fortunately,  Positive  and q u a l i t a t i v e  (see  to  review a r t i c l e s ,  available.  importance  a  HIV and  and  become  of HIV,  childbearing  C a n a d i a n Women a n d A I D S :  identified.  (1992)  of  Wiener  1990) ,  also  and  aspects  The few r e f e r e n c e s  presented  been  review a r t i c l e s ,  AIDS  1989).  thus  far  medical  reproduction  impact  1992)  accounts,  on the  psychological  by  Statistics Taylor,  1992;  focuses  person  areas  living  of  w i t h HIV  l i s t , drawn  literature  up  was  by also  utilized. Social  support,  encompasses the informational these  as  support  needs  1988;  Manson  family 1988), from  aid  of  1991), and to  health  organizations  by  women  money  and  Willms, to  the  fear  and  in  of  this  emotional, and  with  found to  rejection  run the 1994;  1990;  and  1991;  Shayne  isolation  and  from  Lindhorst,  Zuckerman  professionals  of  Social  gamut  adequate and a p p r o p r i a t e  helping  and  adequacy  HIV/AIDS.  (Allen,  study,  tangible  the  & Hulchanski,  (Manthorne,  p r o v i s i o n of  of  living  shelter  Hayes  defined  sources,  t h e s e women w e r e  friends  the  aspects  from various  perceived  basic  broadly  functional  needs of  Kaplan,  as  &  from  & Gordon, services service  ( T h e A C T U P / N e w Y o r k Women a n d A I D S B o o k G r o u p ,  14  1990; A l l e n ,  1994;  Deficiencies and  other  increase  the  stress  a woman who i s  Evans,  1987;  Roberts,  contact  others, may b e with of  might  to  the  j o b due AIDS  to  illness,  (Kneisl,  AIDS stigma  and  and  woman w h o i s  the  living  professionals 1992) .  face  i l l or  dying  Straker  (Muth  &  relationships,  Fritz, due  to  leave  supported. negative  feelings  in  and mixed messages  HIV p o s i t i v e .  value,  with  r e l a t i v e l y young  Women  living  e x p e r i e n c i n g many l o s s e s ,  emotional or  Some women  overburdened,  H I V a n d A I D S a l s o may b e  instrumental  and  d u r i n g i l l n e s s may  r a t h e r t h a n more  to  inappropriate  Kuehn,  nonreciprocal  may f e e l  due  life  extremely  Severinsen,  be  might  overidentification  a d d i t i o n a l l y provoke  caregivers sent  or  as  turn  stressful  health  supporters  who a r e  in  (Henderson,  with professionals  a woman f e e l i n g l e s s Illness  such  may  the  1985).  service  potential  themselves  of  that  may  w i t h HIV/AIDS  support  providing  issues,  inegalitarian  increased  social  professionals  network  living  reported  them  happens as like  1992)  with  HIV have  Countertransference  people  social  (Wortman & Conway,  refused  clients  woman's  p r o v i d e d by  having misperceptions  aid  and  1994).  support  consequently  unsupportive AIDS  a  Problems  and  have  social in  providers  event,  with  in  people  experience. support  Richardson,  such  as  death of a partner  the or  both  loss  child  of  a  due  to  deal  of  1993).  HIV i n f e c t i o n . a d d i t i o n a l l y have  attached  to  them,  and  15  Plummer  a  (1988)  great  writes  that  segregation, AIDS has  d i s c r i m i n a t i o n and  generated  stigmatized injection  fear,  entities  drug use,  & Meltzer, reactions  1989; of  of  of  its  others  are  death,  the  result.  with  already-  homosexuality  stigmatization results  1992). major  (Miller,  associations  sex,  and f u r t h e r  Palmer,  w i t h H I V and AIDS account  with  exclusion are  Fear  of  abandonment  stressors  1988;  of  Sadovsky,  l i v i n g w i t h HIV, Fran Peavey  (1990)  (Nera  and  persons  1991).  and  the  living  In her  own  writes:  T h i s p e r s o n d o e s n ' t e v e n k n o w w h a t I am g o i n g t h r o u g h . . . I am s i t t i n g h e r e l o o k i n g l i k e a normal p e r s o n , y e t I have a deep p a i n i n s i d e o f me - a n d t h e y d o n ' t e v e n k n o w . . . A m I d o i n g a g o o d j o b o f c o v e r i n g u p w h a t I am r e a l l y f e e l i n g and t h i n k i n g ? They c a n ' t t e l l . I d o n ' t want them t o know. But then i t would be a r e l i e f to share t h i s w i t h somebody...(p.126)  Accounts  from o t h e r  women l i v i n g  w i t h HIV/AIDS range  from:  I f women t e s t p o s i t i v e , t h e y s h o u l d t r y n o t t o be s c a r e d t o c o n f i d e . . . . b e c a u s e y o u c a n ' t do i t a l o n e . . . . Y o u h a v e t o h a v e some k i n d o f release, t o t a l k t o someone, t o l e t i t out somehow. ( R o s t o n , 1 9 9 0 a , p . 6 4 ) . to  that  of  "Dezarae",  who  says:  I f e e l my f a m i l y h a s b e e n d r i f t i n g a w a y f r o m me,...because they're scared to bring their c h i l d r e n a r o u n d me o r my d a u g h t e r . (Roston, 1990b, p . 1 6 8 ) .  Women whether of  struggle those  whom t h e y  women w i t h  decision,  as  with  children,  whom t o tell this  disclose  will can  be be  to,  and  supportive. an  when, In the  extremely  c h i l d r e n may i n a d v e r t e n t l y r e v e a l t h e i r 16  and case  difficult mother's  HIV s t a t u s  to  presentations Pliskin their  others  (Reid,  1993).  at  Berlin  AIDS C o n f e r e n c e  who e x a m i n e d  non-infected  b y women b e i n g well-being Forty  percent  Despite note  until a  disclosure  children.  concerned  and  would never  to  the  fear of  of  the  tell  their  a l l of  the  that  AIDS  recently,  their  by  their  children.  involved in  the  study  said  stigmatization,  s t i l l  have  not  fully,  Gibson,  1991).  Cumulative  by AIDS, of  Control  laboratory  results  from October  women  does  individuals, Therefore, of  the  recorded,  BC C e n t r e  of  is  the  for  antiretroviral  through  the  tests  Centre's  a  the count  tests  Women  AIDS  by  of  1993  positive of  of  number  retests.  BC h a v e  therapy  received  or  for  drugs  17  from  positive of  free  (Dr.  having  tests.  Robert  opportunistic  HIV/AIDS Drug Program  show  tests  HIV  Dr.  BC  fifteen  a l l ages  number  may b e  the  women a g e s  the  the  provincial  September  for  as  (Stuntzner-  released  to  have  women a r e  w h i c h document  1985  important  Excellence i n HIV/AIDS reports  women f r o m t h r o u g h o u t for  with  i n B C . The number  it  they  recognized  though  w i t h 39 women o f  indicate  as  some  (1993)  HIV antibody  not  been  statistics  Disease  o f AIDS  even  people  for  diagnosis  is  discriminate.  category  a  it  not  growing  and over have been  psychological  does  fastest  positive  influenced  rejected  external  affected  471  to  children.  which is  that  children's  of  w i t h HIV  itself  and  review of  included that  b y women l i v i n g  being  group  Centre  (1993)  N o n - d i s c l o s u r e was  about  women  Hankin's  Hogg  that of  148  charge  infections  Robert  Hogg,  personal  communication,  enrolled  i n the  Schechter,  program,  Hogg  approximately  March  &  4 00  48  1995) .  lived  may  the  148  i n Vancouver.  0 *Shaughnessy  women  . Of  be  (1994)  women  Strathdee,  estimate  HIV p o s i t i v e  that  in  British  for  Disease  Columbia. The H I V / A I D S D i v i s i o n Control  (1994)  cases  of  8990  women  s t i l l  Canadian HIV  received total  include  Sample  director  Courier,  1992).  contact,  followed Control,  for  Disease  the  world  causes and  AIDS of  the  number  (Chu,  AIDS  of  these  L i m i t a t i o n s of of  women who  that due  the  women  to  may  the are be  "misdiagnosis  Sexually  10  from  per  cent  women  Columbia and  to  be  use  Division,  to  infected be  Buehler  HIV/AIDS  of  are  & Berkelman,  o f A I D S c a s e s a m o n g women i s 18  Vancouver the  most  heterosexual  Laboratory women HIV  the  (Levine & Neveloff to  positive  (BC C e n t r e  with  one  of  i n Canada  through  drug  Transmitted  (The  Over t h r e e m i l l i o n  now e x p e c t e d  attributable  underreported  come  1994).  d e a t h a m o n g women  deaths  that  HIV/AIDS  estimated is  of  intravenous  1993;  w i t h 174  exclusion  H I V f o r women w a s  by  Control, are  noted  British  common a c q u i s i t i o n o f  female  15).  Columbia In  adult  1993.  statistics  Michael  British  482  cautions  (p.  in  1990) .  31,  the  i n HIV/AIDS  Rekart,  of  i n Canada,  (1992)  Control Branch,  Disease  cases  underdiagnosis"  Disease tests  Laboratory Centre  December  statistics  underrepresented  Dr.  to  the  reports  adult  alive  positive.  and/or  of  Dubler,  believed  expected  Centre around  (Hankins,  five  1990).  for  leading 1990), to  be  Worldwide, to  equal  the  number  among men b y t h e  HIV ways  to  gynecological Canadian  that  to  Case  that  AIDS,  the  1994), risk  their  of  on  lack of  Canada,  is  history  the  of  (1993)  required  survival  of  the  1991). tested of  Cohen,  AIDS  women  of  this  1993;  or  resulted  non-existent Denenberg,  in  1992).  19  to  some  to  a and  as  not  categorizing cases  further  care  Health  of  women  along  dying earlier  medical  at  so-called  women  and  diagnosed  1990;  (Johnston,  themselves  perceive  sometimes  has  belonging  women  labelling  HIV, being and  belonged  Both  incorrectly  focus  being potentially  homosexual  may  illness, or  they  1993) .  the  community  o v e r l o o k e d as  T h i s has for  epidemic,  homosexual  being  (Patton,  s t i l l  to  risk.  male  as  are  to  cervical  Cohen  s t i l l  and  has  concerns  (p.24).  research  HIV, unless  such  inappropriate  1990;  invasive the  professionals  of  the  because  course  included  1993  due  of  professionals  being  July  some  p o s s i b i l i t y o f H I V i n f e c t i o n i n women b e c a u s e  group  (Pearlberg,  of  health  beginning  risk",  partially  since  in  to  groups"  health  different  Only  natural  contracting  minority  although  women..."  a n d women h a v e b e e n  "risk  i n women,  likely  been  of  "at  in  1992).  resolving  deal  the  and t h a t  the  largely  of  great  assumption  Since  not  a  in  AIDS  understand  overlook the  (Hunter,  is  Definition  "assist,  underestimating asserts  i n men,  symptomatology.  AIDS  cancer  with  2000  infection manifestation  similar  fully  year  in  because  (Campbell, and  Welfare  The r o l e  o f women i n H I V i n f e c t i o n h a s  t o women b e i n g p o r t r a y e d men a n d  children  for  women  presented that on  at  rather  themselves.  t h e r e were  199 0  San  faced with:  while pregnant,  decisions  because  of  Levine, 1988).  risks  1990; Women's  to  Levine  for  clinical  drug  overall  health  of  review  AIDS  also  about to  and  have  facing  fetus  (Hunter  & Neveloff  exclusion trials,  or  83  papers  about  w i t h HIV and  positive  child  status  i n the  midst  from  health  pregnancy  an  option  & Rubenstein, 1990; also  the  1992;  Mitchell,  been  used  as  underrepresentation  often  i n f e c t e d women  to  living  has  of  showed  Dubler,  potential  risks  Conference  pressure  consider  1988;  papers  written  a  of  of  their  not  reproductive  justification AIDS  or  the  infection  considering the  women  f i n d i n g out  abort  of  confined  Lindhorst,  (1990)  have  d e c i d i n g whether  to  been  on c h i l d r e n compared  conflicting information,  professionals  than  1990;  Francisco  authors  reproductive  AIDS a r e  vectors  Sherr's  3 08 p a p e r s  Numerous  difficult  of  1991),  the  women.  potential  (Kurth & Hutchison,  Stuntzner-Gibson, HIV  as  often  at  the  expense  (Henderson,  1992;  that  living  of  in the  Pearlberg,  1991) . Wofsy come  (19 8 8 )  makes  the  point  of  life,  from  a l l  walks  boundaries  of  class,  addresses support that  this  group "HIV  i n her for  tends  race article  positive to  with  and  women  issues  income.  reviewing her  women  bring  i n Toronto  women  20  w i t h HIV  crossing Taylor  experiences where  together  she but  a l l  (1990) in  a  found other  circumstances It  has  been  to  "risk  drug  be  as  or  In  with  (Johnston,  studies  by  forms  in  Hogg e t  of  social  and  Men  incomes  Donlou,  sources were  HIV  Wolcott,  mothers  and of  social  were  who  up  or  are.  In  injection  9% o f  percentage  women  increased  Gottlieb  and  friends support,  Social  of  their  relation  in to  men have  men  to  network  (1989)  incomes.  found  as  this  overall decrease  as  well  disclose their negatively the  of  as  health  correlated  social  properties  that  important  contacts  members,  studied  functional  21  be  between  survival  high  (1985)  for  AIDS  with HIV.  shorter  social  to  examine  HIV and  living  identified  that  found to  to  with  Reasons  of  which  relationship  Landsverk  respondents  was  Alexus  in  were but  part  support  depression. and  part  literature  than  the  on the  the  found  on  hesitancy  properties  intercourse  women made  survival  frequency.  fear  with  groups"  demographic  HIV p o s i t i v e are  examined the  in  included  status.  in  infection  close  reduced  "risk  partners  that  support  status  after  these  found  socioeconomic  times  from  unprotected  sexual  1991,  (1994)  low  in  testing  al.  with  turn  (p.12).  Support  were  various men.  them a p a r t . "  1994) .  HIV/AIDS and S o c i a l Some  focus  have  Montreal,  HIV, but  set  women f r o m a l l k i n d s o f  engaged  use,  can  the  m o r e women w h o a r e  users.  living 21%  can  lives  that  behaviours",  injection  drug  women's  suggested  backgrounds  Canada,  of  network ten  HIV  positive She  men,  found  social  the  levels levels  social  of  the  the in  only  the in  they  of  the  there  was  more  loss  of  who  were  study  receive  decreased  with  increased  social  or  the  unable  to  a n d who t h e r e f o r e  with  that  worse  support  may p o i n t  AIDS,  are  g a y men  Individuals with  This  they  p o s i t i v e .  of  found  complaints. to  for HIV.  terms  associated  counterparts.  i l l that  tested in  their  were  likely  receive,  been  similar  men  s t i g m a t i z a t i o n of  who a r e  support  quite  although  support  less  healthier  burnout,  to  were  not  HIV i n f e c t i o n ,  psychosomatic  prognoses  be  (1990),  symptomatic  of  to  for  a n d Temoshok  and  those  men who h a d  properties,  members  Zich  their  13  groups  support  network  AIDS  and  to  than  .caregiver  perception  reciprocate  may f e e l  of the  unentitled  assistance. a  study  seven  (1993)  people  living  were women),  examined d i s c l o s u r e of  others.  and  results  decisions  the  indicated that about  who  they  to  variables  Hull-York  associated  adaptation  to  and  satisfaction  AIDS  inform  Fawzy  were  good  include  of  reactions  Wolcott  family,  friends  their "make  status careful  HIV s t a t u s but  -  also to  (1989)  psychological  satisfaction  support.  r e l a t i v e l y high, 22  which  R e s e a r c h Team  no one o f  their  (of  not avoid  25).  and  with  emotional  to  HIV p o s i t i v e people  others."(p.  Alumbaugh,  HIV/AIDS  HIV status  avoid potentially hostile  Namir,  with  Seventeen people had t o l d  causing distress  support  181  percent  and  only to  of  with  These even  though  found and  that  physical  instrumental measures network  of size  was  small.  It  has  and belong to support  the  who  because  the  of  the  found  that  neighbours was  Tobey with  of  friends  support  positive social  that  support  associated  of  perhaps  illness.  contact  support  i n the men's  in  a  the  Chauncey  and  included they  of  g a y men  most  highly  the  amount  received,  and the  percentage  the of  network. review of  white North American males.  Major  findings  correlation of  positive  with  tended  the  satisfaction with t o be  rated  as most  Green concluded that  was j u s t  in its  infancy,  support  strong  and  that  d e s i r a b l e by HIV  research  on HIV and  p a r t i c u l a r l y because  people affected by AIDS/HIV comprise a very  23  a  social  found  included  to  with  to  networks  comprehensive  relation  patients  alluding  network c h a r a c t e r i s t i c s well-being  with  patients  Hays,  support  (1991)  HIV, and  state  persons.  stigmas  received by  setting,  social  undertook  support  isolated  form  the  informational  reviewed literature  emotional  HIV  in  this  relatives  toward gay,  psychological  the  same  with  literature  are  Baker and Seager  psychological  (1993)  socially  have  1989).  c l o s e r e l a t i o n s h i p s they had,  versus  Green  of  than  AIDS and found t h a t  number o f  bias  less  and  and  who  to  r e c e i v e d b y male AIDS h o s p i c e  examined the  emotional  women  c l a s s i s t and s e x i s t  i n the  correlated with  HIV p o s i t i v e  much more l i k e l y are  closeted  support  associated (1990)  men who a r e  than  (Kizer B e l l ,  friends  diagnoses  stigma  often  social or  that  them,  racist,  significantly  other  to  are  illness  noted  gay community are  available  positive,  with  been  heterogeneous  group  by  gender.  virtue  of  various  HIV, which  stages of  who  are  information  of  a  literature, gay  which  address  of persons  support  be  constructs  of to  with  q u a n t i t a t i v e l y document  social rigid  AIDS tested  social address  HIV and  social  and with  needs  is  the  at  supported  literature.  support  issues  biomedical  experiences  by  the  lack  of  any,  d o women w h o a r e  have in  the  support. the AIDS  support?,  have  been  neglected  Reviews  of  the  studies  number  of  variables  present  study  as  possible  questions:  1)  in  the  Lower  and  2)  In  of Do  this  what  study  women, w h o  Mainland general  HIV p o s i t i v e perceive a  24  in  a  The purpose  support?  of  Where i n f o r m a t i o n  focus.  generated  of  lack  and s e l e c t e d q u a l i t a t i v e and q u a n t i t a t i v e  can  living  not  HIV p o s i t i v e  men w i t h  therefore  may  a v a i l a b l e i n the  available,  favour  of  socioeconomic status  illness.  The n e c e s s i t y t o  is  culture,  A l s o n o t e d was a n o v e r - r e p r e s e n t a t i o n  symptomatic  women  race,  lack  is are  perceive areas, of  a i f  social  METHOD  Study Design A d e s c r i p t i v e d e s i g n was living  with  suggested (Kaspar,  HIV/AIDS  of  in  design interview  number  women  sampling  frame  variables, the  to  be  1992).  There  form  is  have  same  the  research  to  not  will  design is  and c o n t r a r y  whether  a  as  studies research  social  support  these  women.  of  self-administered  allowed in  the  for  study  a  or  maximum  within  the  be  i n requesting  experiences 1989).  by  study  weaknesses  designs,  for  on  subjects  This  well  documented  control  over  independent  a  designs,  Criticisms  in  said  validity, "rating"  designed  survey  descriptive  to  in  be  of  a  survey Thus, on  of  the  scales an  been  strong  opinions,  with  over  also  because  design.  d e s i g n was  25  have  participants.  on p r e d e t e r m i n e d was  control  presented  a l l  generally  weak  been  concepts  meaning  can  have  l i t t l e  the  artificiality  possible  of  possible.  and  inherent  exploratory  whether  are  support,  This survey  experimental  r e l i a b i l i t y  the  1991).  involved  survey  regarding  Babbie,  social  some  questionnaire  made  or  and  of  experiences  the  of  environment  survey  lack  i f women who  stipulations.  weaknesses (Hessler,  examine  investigate  the  in  telephone of  reviews  to begin to  importance  Descriptive  a  Stuntzner-Gibson,  was a n a t t e m p t is  perceive  in literature 1989;  chosen to  feelings (Rubin &  awareness  However,  found t o be  of the  of a l l  most  feasible.  Sample This  study  sample. method of  is  the  most  a  cross-sectional  descriptive feasible,  participants  i n the  In  Quarter  the a  At  used  the  Third  BC C e n t r e  total  of  between number  level  i n order  sampling  October  to  design,  were  1985  and  i n c l u d e s women u n d e r  this  sampling  s u r v e y a maximum number  1993 AIDS U p d a t e  tests, 7,  of  convenience  frame.  for Disease Control  6,843  non-random  report  (1993),  positive September  15 y e a r s  of  published  495 f e m a l e  for  the  30,  1993  age,  tests  by of  HIV antibody i n BC.  and those  This whose  age was unknown a n d r e p r e s e n t s  7.2% o f  a l l positive tests  in  the  studies  estimated  400  to  of  BC  province.  600  women  may  (Strathdee, nine those  Seroprevalence be  Schechter,  women h a v e women who  Control,  HIV  1993).  anticipated  to  had  AIDS  have  was  limited  who may h a v e women l i v i n g  with  died of  increase,  province  this  1994).  Thirty-  number  includes  (BC C e n t r e  women  testing  comprising  an  for  Disease  positive  even  is  greater  tests. for  this  study  i n the  or  may b e  HIV i n t h i s  i n c l u d e d women who  Lower M a i n l a n d .  geographically  access,  the  BC, and  number  HIV p o s i t i v e and l i v i n g frame  in  already  The  s a m p l i n g frame  in  Hogg & 0 ' S h a u g h n e s s y ,  percentage of p o s i t i v e The  positive  that  in  using  area.  26  order  to  sampling  include  services  Further  The  are  women  available  to  restrictions  in  the  sampling frame,  were of  considered.  obtaining a This  study  may n o t  However,  larger  AIDS,  included  in  response  variation  the  The  to  although  to  fewer  status  of  1993),  Study p a r t i c i p a n t s  who  liaison  are  organization Positive  the  (see  approval  now  Oak T r e e C l i n i c .  the  Vancouver  data  was  collection.  approval  of  Behavioural Other Studies  the  support  HIV  of  men  it  these  with  Appendix A for  (BC C e n t r e  services  copies  in  not  able  Subject study  Sciences  to  be  of  Hospital  order  for  women of  are:  the  Infectious  by the  U n i v e r s i t y of  Screening  Committee  i n v o l v i n g Human S u b j e c t s  The P o s i t i v e Women's N e t w o r k  27  but  during the  took  (see  (PWN) h a s  place British for  at  letters  obtained  Society,  arranged  recruitment  for  staff  These  A p p r o v a l was a l s o (PWA)  is  study.  participation).  AIDS  two  infection  criterion  i n the  Paul's  of  was d e c i d e d t h a t H I V  which provide  St.  or was  comparison  between  with  number  a  this  and B C ' s C h i l d r e n ' s H o s p i t a l HIV Care  Persons  distribution  for  recruitment  Network,  Clinic,  favour  who may  recruited via professional  and  Disease  in  determining  allow  possible  organizations  Women's  to  the  were  Hiv positive  HIV p o s i t i v e ,  and therefore  would be  ethnicity  ruled against  question  women  i n c l u d e a s m a n y women a s  three  a  perceived  than  and  size.  questionnaire  Control,  positive  these were  sample  number  significantly Disease  sexual orientation  i n c l u d e d women who a r e  have  groups.  such as  Unit,  from  the  survey time  of  following Columbia  Research  and  Appendix B ) . approximately  80  a c t i v e members, Mainland. on  a  A support  as  system has  many women t o  only  trials  are  who a r e the  these  people  are  the a  as  people  with  HIV i n  study  i n the  peer  phone  Monthly  events  a challenge  attendance.  1994).  St.  Paul's  HIV p o s i t i v e St.  from  a l l  Paul's  HIV i n BC, and  seen  at  IDC t r e a t s  During  the  women a r e  at  any  over  Hospital  usually  with  HIV.  Recently,  are,  or have been  with  HIV disease.(Judy  time seen  for when  course  the at  of  involved  the in  a  85 women are  various  times.  The  p o s i t i v e women o n  c o u n s e l l i n g and  i n j e c t i o n drug users,  7 5% o f  Mainland  eight  they  once  Lower  are  first  m o r e p o s i t i v e women a r e  Krueckl,  about  drug  people  least  Approximately 70 to  worker u s u a l l y sees about  on-going basis  Hospital  A p p r o x i m a t e l y 95% o f  BC.  for  have b e t t e r  with  the  the  Retreats,  province are  IDC.  of  events.  (IDC) a t  well.  i n the  is  communication,  Clinic  treating  it  Lower  meeting  time  Instead,  programmed  On a n o n g o i n g b a s i s ,  throughout  These  at  t w e n t y women w h o w e r e H I V p o s i t i v e w e r e  IDC s o c i a l an  low.  f o u r months,  Disease  Hiv positive  gynecological  seen  held  appears that  PWN, p e r s o n a l  c a r r i e d out  living  study,  who  to  clinic  IDC.  very  come  once e v e r y t h r e e o r  the  being  it  The I n f e c t i o u s  in  not  was  i n the  which had p r e v i o u s l y been  although  ( M a r c i e Summers,  is  t h e s e women l i v i n g  organized to provide support.  scheduled,  held  was  attendance been  of  group,  weekly basis,  study,  are  w i t h most  being  o r who h a v e  IDC, personal  support. diagnosed seen  who  partners  communication,  1994) . During  the  study,  the  HIV Care 28  Unit  at  BC's Children's  Hospital  became  HIV C e n t r e . Unit,  for  who  this  seen  at  adults  third  of  study were a l l p a r t  attend. the  have  the  study  The a c t u a l  Oak T r e e been  seen  communication,  Situation-specific  of  service. a  Family  former HIV Care T h e women  support  children.  liaison via  clients  about  section  i f  were  explaining clients  the  they  Staff  the  group  This  for  support  were  Clinic,  et  or  notified to  sent  face out  asking  interested a  to  list  clients  interest  r e c e i v i n g the (19 8 9 )  instrument  was  study  the  survey covering l e t t e r the  women who  available. with  Sheckter,  a  at  have  Sixty-  least  Oak T r e e  one-  Clinic,  in  clients  contact.  The  to  send  to  a  indicated consent.  their return  (Appendix  D) .  when  When a  the  survey  Written informed  instrument  necessary,  the  cover  study,  them.  of  Positive  back  Appendix  the  Staff  informing  points  (see  study  not  their  participating  of  in  was a d o p t e d .  letter  them  was m a i l e d o r g i v e n t o  al.  not  recruitment  face  the  of  the  subject  given study  p r i o r to  Namir  One  at  of  1994).  study,  indicated  questionnaire consent  was  organizations  telephone  number  Clinic  (Lori  Women's N e t w o r k i n i t i a l l y  by  Women a n d  d i d the  consultative  t h e s e b e i n g men.  personal  C) .  as  the  i s made u p o f a c o r e g r o u p o f a p p r o x i m a t e l y s e v e n women  been  at  Clinic,  at  HIV p o s i t i v e and have  regularly  one  Clinic  an o u t p a t i e n t  women w h o a r e group  Oak T r e e  The Oak T r e e  provides  recruited  the  as  as  documented  completion of  T h i s was  outlined  in  (see A p p e n d i x E ) .  participating  organizations  29  (BC's Children's  Hospital  HIV  Care  completing  the  researcher  then  specified  on  contacted  survey  via  consent  At St.  a the  Paul's  methods  of  the  possible  mail-out questionnaire.  prior  information  survey  with prior  to  questionnaire hoped  to  the  Hospital eight  and Unit  through  Ten  by  Liaison  a  the  ask  person  response  were  Disease  surveys  sent  consent  survey.  to  be  The t o t a l  staff  a or  the  Receiving  the was  collection  by the  recruited of  social  St.  Two s u r v e y s  Network were  interviewed sample  by  s i z e was  for  Paul's  worker, of  and six  returned,  BC's Children's Hospital to  from  about  Data  clients  returned.  o r a 73.9% r e s p o n s e organization  because  organization  rate.  the  1993.  P o s i t i v e Women's of  or  17 w o m e n w e r e  Clinic  were  i t .  in  potential  questions  of  worker  contact,  the  day  them.  resulted  provided  copy  described,  clients  gave  completed the respondents,  to  trusted  surveys  the  seven  who  a to  methods  completed  a l l  receiving  Infectious  distributed  study  from May t h r o u g h O c t o b e r  the  study.  the  to  elected  person  The  subject  IDC s o c i a l  were  of  and  the  questionnaire  Person to  opportunity  contribute  took place Using  an  by  w h i c h , may h a v e  direct  subjects  the  time  participate  recruitment  resistance  a  the  would  option  interview.  at  Hospital,  thought  subject  about  women  the  completed  sending or g i v i n g  These  clients  telephone  form  w o m e n whom s h e  study p r i o r to  of  offered  contacted  a  (Appendix F ) .  Unit)  HIV Care telephone  23,  with  17  rate. were  30  asked  to  distribute  the  survey only British lived of  to  those  Columbia.  o r d i d not  the  Lower  virtue  women w h o l i v e  of  a  Where  ask,  staff  data  Mainland  questionnaire  be  lived  area.  additionally only  them  to  be  numbers,  were  d i d not  except  consented  envelopes  to  included or  the  the  separate  stamped,  were and  later  date.  they  the  limited  participate access  to  or  to The  phone  chosen  and  questionnaires self-addressed  Questionnaires  names  the  known  names  stamped,  identifying  by  study.  i n t e r v i e w was  survey.  outside  geographical  i n the  subject  in  woman  study  a s k e d women who w e r e  the  of  the  or  case  given  have  discussions  the asked  In order control of  the  In  group  the  numbers  were were  (see  the  of  subjects  Appendix G ) , and  a  i f for  and  they the  to  be  study p a r t i c i p a n t s  in  over  small  31  the  groups  data  telephone telephone,  regarding  like  The  participant  interviewed by  would  ownership  results  the  and a contact  information  to a  envelope were p r o v i d e d .  initial(s)  same  group  survey package,  a m a i l - b a c k p o r t i o n on w h i c h  the  were  survey.  self-addressed  g i v e a name o r  In  group  a  asked whether  self-administered  explaining  included  asked to  they  no  results  letter  number.  of  telephone  with  which  the  were a l s o r e c r u i t e d f o r a proposed focus  separate  is  e x c l u d e d from  investigators  as  know where  of  requested.  Subjects  letter  a  Completed  included  confidential,  have  where  to.  mailed  discuss  outside  HIV p o s i t i v e to  investigators  not  question  participant Staff  did  Lower M a i n l a n d  r e c e i v e d f r o m women l i v i n g  would  i n or  i n the  the  called to  focus at  feel  a  that  collected,  was p r o p o s e d .  A  richer  interpretation  through  this.  focus  group.  women  who  This  Instead,  summary o f t h e  maximum not  might  be  obtained  indicated interest  in  as  group  was  d e c i s i o n was an  planned too  based  interest  low to  on  in  because  the  the  conduct  l o w number  participating  be p r o v i d e d w i t h  of  in  a  a  the  written  results. use  to  sample  the  held  t h e s e women w i l l  the  appropriate  not  for  indicated  Although  results  group.  was  turnout  focus  group.  i n a focus group  anticipated  the  Seven study p a r t i c i p a n t s  participating A  of  of  the  a  non-probability  research  size,  the  question  results  be g e n e r a l i z a b l e beyond the  are  study  in  sample  order  less  was  to  most  obtain  reliable,  and  a are  population.  Measures A s u r v e y was u s e d and  non-standardized  questionnaire professionals the  three  was  liaison Persons  women  are  who  a  limited  pretested number  the  measures  (see  developed  i n  Living  was number  with  questionnaire  to participate  as  in  i n the  G) .  The  consultation  with  as  (PWA) to  by  these who  i n order actual  32  HIV p o s i t i v e  order  women  standardized  Appendix  well  AIDS  pretested of  included  women w h o a r e  organizations,  HIV p o s i t i v e ,  questionnaire  Only  study which  who w o r k w i t h  Vancouver  The  i n the  to  AIDS V a n c o u v e r , Society,  improve people  were  HIV  allow  for  study.  from  and  by  validity. as  well.  positive a maximum  See A p p e n d i x H f o r  a d i s c u s s i o n of the The  measure  information,  included  experiences  Additionally, specific  pretest. questions  about  and perceptions  of  questions  support  asking  services  about  for  the  HIV  demographic  social  support.  utilization  positive  women  of were  included. The of  s t a n d a r d i z e d measure  Perceived Social  Farley,  1988)  support and  adequacy  a  Support  from  and i t s  Other  considered,  but  its  Likert  Powell, to  be  judged less  perceived been  Walker,  social  al.,  subject  from  1991).  an  from  Kazarian  and  and  easy  .84 t o  samples  are  social f o r the  .92.  McCabe,  1990) to  to  friends for  its  support.  each of  support  12  were  present  study from  (Dahlem,  1991;  Zimet,  and has been  administer  found  measure  of  coefficient alpha This  involved,  consistency  suggests that  has even  r e l i a b l e data  viewpoint  Factor analysis confirmed the  33  social  MSPSS was o b t a i n e d  Cronbach's  internal  on p e r c e i v e d  on a number o f o c c a s i o n s  support.  range  when d i v e r s e provided  reliable  chosen  and  J).  Werkman a n d B e r k o f f ,  valid,  found to  the  (see A p p e n d i x  1991:  was  perceived  use  Zimet  family,  i n responses  appropriate  Permission to  Farley, a  sources:  MSPSS  scale  of  Scale  s u b j e c t i v e l y measure  The  measures  developers  and  (Zimet, Dahlem,  specific  The MSPSS h a s b e e n t e s t e d Zimet  Multidimensional  multidimensional focus  questions.  one o f  three  to  other.  uses a seven-point  (Appendix I ) .  the  (MSPSS)  developed  significant  brevity It  was  used,  (Dahlem  construct  are et  validity  of  the  MSPSS,  clearly  as  it  differentiate  T h e MSPSS may n o t under  examine  support  in  literature  by v i r t u e  factors  social  to  have  are  suggest  that  data  a l s o have  similar  Reliability that  the  with  the  this  is  of  these  telephone  instrument Although  the  was  the  survey  been  the  and  social  from  being  the  important  HIV p o s i t i v e ,  MSPSS  reliable  more social  drawn as  to  with  housing  and  and  data  from  the  valid,  this  may  questions  may  non-standardized  are  in  could done  the  letter,  order  the by  to  interviews.  MSPSS i s  considered short,  The  the  34  control form  is  compare  part  covering over  not. and  the  where  was  noted  which  results  of  letter  when, It  time,  were  between  researcher'completed  The in  ensuring  latter  telephone  one  by  same w a y e v e r y  forms.  but  Furthermore,  also  increased  questionnaire  completed in  be  i n the  and  completes  were  two g r o u p s .  the  If  be  survey  for  subject  surveys  as  f o r women w h o a r e  instructions  self-administered,  of  the  i n t e r v i e w consent  which  the  non-  properties.  accounted  a n d how t h e  in  have  services  Therefore,  being postulated  shown t o  questionnaires same  such  subjects  support  satisfaction  validity.  from  social  included  that  support.  study.  variables  face  study  this  areas  of  of  cover  subjects'  support  present  sources  were  distinct These  appear  in  the  services.  of  demonstrated  adequately  measures  clearly  been  between  investigation  standardized  and  has  length  regard  to  questionnaire  of  the  a l l  study  reliability. as  a whole  is  not.  However, p r e t e s t s  regarding  Data  the  length of the  were  analyzed  coded  using  and  the  were used t o  perception  of  data.  The  social  for  study, level  interval  ordinal data  data  were  size  of  group.  by  and the  focus  Given  frame,  in  of  1991)  important  and  data  describe the  to  for  the  demographic  Pearson's  r,  examine  certain  r  the  were  is  i f  treated  as  test.  analysis  to  was  intended  purposes  non-parametric data  tendency of  of  for this  interval  Most  of  ensure  a  the cell  Final  result  i n t e r p r e t a t i o n was  to  input  from  survey  participants  focus  was d e c i d e d a g a i n s t  due  to  in the  l o w n u m b e r o f women e x p r e s s i n g a n  and the  current  experiences  Gibson,  this  l i m i t a t i o n s of  sampling  the  data,  Descriptive  a  be  results interest  group.  the  light  central  and  five.  However, t h i s  obtained,  Windows.  statistic,  nominal  utilize  the  the  UBC c o m p u t e r ,  covaried. Pearson's  level  and  least  for  and to  collapsed p r i o r to  at  aided  the  to  the  crosstabulations  hypothesized variables with  determine  support,  some  into  program  non-parametric  calculated  in  feedback  questionnaire.  entered  SPSSx  statistics  be  r e v e a l any negative  Analysis  Data  use  d i d not  of  the  measures,  literature. women who  and the  survey  r o l e of  this  design,  the  study remains  Information is are  social  i n h o w t h e s e women c o p e w i t h 35  this  is  feasible  needed  HIV p o s i t i v e support  limited  about  (Stuntzner-  thought  stressor  in  to  be  their  lives to  (McGough,  gain a better  1990).  understanding  women  living  with  study"  from  which  which  may  The r e s u l t s  address  H I V . The a  of  the  survey  larger-scale the  of  36  s u r v e y may b e  social  support  may p r o v e survey  particular  methodology.  the  may  to  be  be  difficulties  used  needs a  of  "pilot  developed, in  study  RESULTS  S i x t e e n women w e r e g i v e n a s e l f - a d m i n i s t e r e d completed questionnaires questionnaires,  eight  were  returned.  from the  ten  the  P o s i t i v e Women's N e t w o r k . A n a d d i t i o n a l for  the  Hospital,  completed  interview.  Therefore  respondents, Nine 20-29,  of  the  four  some  vocational high  the  women w e r e  were data  six of  can be  found  or  in  30-39  of  training,  annual  f o u r had incomes incomes  supported  were  by  reported  as  the  other  employment  over  (two).  extraordinary  The two assistance  age  23,  "other"  group,  1.  37  and  four  Four of  and ten  was  were  of  the  women  three had  the  had  completed  income of to  $6,300 $39,999,  The average  number  2.5  Income  subjects (five), (one),  sources  plan",  17  education.  incomes  savings  with  An overview  $40,000.  of  who  telephone  r a n g i n g from $20,000  (number  (seven),  a  was  household  parentheses) : income a s s i s t a n c e  (six),  in  by  Children's  education,  o r h a d some h i g h s c h o o l  women r e p o r t e d  BC's  size  age.  university  an  through  rate.  i n Table  or apprenticeship  $19,999;  sources  sample  the  years  college  school,  people  in  40-59  S e v e n women r e p o r t e d to  total  completed  s e v e n women,  questionnaire  the  ten  six distributed  through  g i v i n g a 7 3.9% r e s p o n s e  demographic had  from the  study  ten  distributed  Paul's  recruited  and two were  Of t h e  St.  were  Hospital;  were  survey and  were  people.  indicating  this  d i s a b i l i t y pension credit the  "pensions".  (one)  and  "PWA H o u s i n g  Table  1:  Overview of Demographic  Data  Variable  Number o f  Age: 20-29 30-39 40-59  4 9 4  years years years  H o u s e h o l d Income: $6,300-$19,999 $20,000-$39,999 over $40,000  7 4 6  Ethnicity: White/Caucasian  16 1  Aboriginal Sexual  Orientation:  Heterosexual Lesbian Previous Current  injection injection  16 1 drug drug  use:  3  use:  0  Have AIDS:  4  Symptomatic HIV i n f e c t i o n :  2  E a r l i e r HIV diagnosis Reasons:  10  possible:  - D r . n o t l i n k i n g symptoms - a f r a i d might be HIV p o s i t i v e - d i d n ' t think at r i s k -not f e e l i n g s i c k  38  5 2 4 4  respondents:  Income s o u r c e the  categories  seventeen  homes. to  a  Ratings of  2 less  majority  i n c o m e was l e s s for  a l l  Deviation  adequate  1  worked outside  representing  income,  and  (eleven)  than adequate or  Four of  indicated  was  2.1  of  their seven  inadequate  3 adequate  inadequate.  respondents  income.  that  their  The mean  rating  with  a  Standard  0.76.  T h e m a j o r i t y o f women housing.  with  respondents  seventeen of  participants  scale,  than of  mutually exclusive.  income adequacy were c o l l a p s e d from a  three-point  income, The  survey  were not  (nine)  reported  F i v e women o w n e d t h e i r  homes,  that  they had  and three  rental  lived  with  parents. S i x t e e n women i d e n t i f i e d one  as  aboriginal.  woman w a s a Three of at  the  the  survey  injection The  as  found out  participants  and that  were spouse  HIV  white/caucasian heterosexual  and  and one  they  were  i n j e c t i o n drug  HIV p o s i t i v e .  indicated that  children they  users  None o f  they  were  currently  a  the  respondents  with  regard  shown  in  partner  Table  or  as as  and  HIV negative. they five  39  2.  spouse  at  women Of  HIV p o s i t i v e ,  and  S e v e n women h a d  the  d i d when t h e y women  Eleven  to  present.  f o u r were d e s c r i b e d as  partner  positive,  of  is  had  described or  they were  users.  eleven partners,  seven same  women r e p o r t e d  they  drug  indicated the  S i x t e e n women w e r e  relationship status  partners  as  lesbian. the  time  themselves  were  reported  diagnosed they  had  relationships In  response  three  end at  time  t o what happened  women  said  reported  that  that  partner  her  the  not mutually  they  that  their  had  ended  ended the  or  to  after  the  five  they  were  ended  partner/spouse the  had  relationship,  r e l a t i o n s h i p . The c a t e g o r i e s  were  Table 2: Status of Respondents  Have c u r r e n t partner/spouse: Partner/spouse i s HIV p o s i t i v e :  11 4  Same p a r t n e r / s p o u s e  as  Relationship  7  ended when d i a g n o s e d 5  HIV p o s i t i v e : Reasons: -partner/spouse died -respondent ended r e l a t i o n s h i p  3 2  -partner  1  ended  relationship  14  children:  2  C h i l d r e n are HIV p o s i t i v e :  four  respondents:  when  diagnosed HIV p o s i t i v e :  each,  and  two said  Number o f  child  died, one  Variable  Fourteen  relationships,  exclusive.  Relationship  Have  diagnosed.  of  the  women h a d  children,  three having three children,  children.  The mean a g e  of 40  the  with  nine  having  one  a n d t w o women h a v i n g  c h i l d r e n was t w e l v e  years  of  age.  The  average  of  because  children were  ages  were  the  and  indicated  one  children  respondent  "adults".  HIV p o s i t i v e ,  women  four  woman  did  each  their not  not  simply  Two women  and  that  are  had  indicated  said  one  children  indicate  included  that  in  that  their  this these  children  positive  child.  were  HIV p o s i t i v e ,  the  not  HIV  Eleven  status  of  her  children. Six four  women w e r e were  diagnosed  diagnosed  between  that  had  they  women  with  partners  of  that  her  the  their  fourteen  children  women  indicated that  that  their  coworkers Mean  were  were  calculated  exclusion for  the  of  one  MSPSS i s  present  1986  and  the  a l l  HIV p o s i t i v e  reported status.  p a r t n e r / s p o u s e knew,  to  1988;  seven  were  women  HIV s t a t u s .  that  they  were  their  indicated  The  eleven  that  their  One  additional  although  knew,  Scale the  subject  their the of  five  women  she  did  reported  Thirteen  fifteen women said  that  women reported  that  their  HIV p o s i t i v i t y . components  Perceived  due  knew,  fourteen  three  total  done on a  knew,  and  six  HIV p o s i t i v e .  parents  siblings  for  for  their  children,  aware of  Multidimensional  None o f  with  their  scores  of  1990,  women  that  friends  to  from  present.  knew  indicated  1989  1993.  at  their  have a spouse at Of  to  nobody  partners  knew  HIV p o s i t i v e  from  1991  told  woman r e p o r t e d not  diagnosed  group to  an  o f women incomplete  seven-point  41  Social  Likert  Support (n=16), MSPSS. scale,  of  the  (MSPSS) with  the  Scoring with  one  indicating strongly the  "very  agree".  following  respondents: indicate they  indicate  asked  For  was  2.56  accommodate 1,2  or  d i d not  rate;  a  and  was  the  5.34  mean  and  and for  2.77 a l l  friends  5.46  non-collapsed  7  to  were being non-  collapsed  score  was  5.11  [collapsed],  (SD=1.69) The  [non-  average  (SD=1.93),  and  to  2  the  the  [collapsed].  was  or  for  (SD=0.79)  s c o r e was 5 . 9 2  (SD=0.6l)  1,  statement  for  of  statement  5,6,  score  while  to  converted to of  in  number  MSPSS  the  family  2.50  categories  using  the  with  "very  three points  converted  scores  The a v e r a g e  seven,  small  4 was  (SD=2.12),  (SD=0.81).  the  with  of  original  mean s i g n i f i c a n t o t h e r  (SD=0.75)  and  were  agree  score  [non-collapsed],  score  3  i n d i c a t e agreement  comparison,  collapsed] , MSPSS  to  3 to  data  (SD=1.87) and the  to of  neutrality;  collapsed data  manner scores  converted to  disagree",  The s c a l e was c o l l a p s e d t o  a participant  were  rated.  strongly  or  collapsed  2.61 data,  respectively. Table  3 shows mean s c o r e s  Multidimensional crosstabulated status  may  Scale by  or  hypothesized were  aware  of  more  support  i f  her  groups have  persons  HIV status,  from  knowledge of her  not  them  than  HIV s t a t u s . 13,  the  three  Perceived Social  related  may  that  of  for  and not  of  a  that from  Support  persons  been  in  components  whom H I V It  p o s i t i v e woman's the  woman m i g h t  persons  who  "n" for  16 a s  the  of  "children"  was  for  as  only those  women w h o i n d i c a t e d t h a t  the  was  network perceive  d i d not  other  the  (MSPSS)  disclosed.  The t o t a l  42  to  of  have  category  groupings,  they had c h i l d r e n  were  included.  Table  3:  MSPSS S c o r e b y H I V S t a t u s D i s c l o s u r e Family Parents  Know  Parents  D o n ' t Know  2 .52  (n=l2)  C h i l d r e n Know  (n=4)  2 .69  2.67  (n=6)  C h i l d r e n D o n ' t Know  2 .57  (n=7)  2.65 1.83  F r i e n d s Know (n=13) F r i e n d s D o n ' t Know (n=3) P a r t n e r Knows ( n = l l ) P a r t n e r D o e s n ' t Know  Subjects  reporting that  who h a d n o t reporting  score  their  score  of  (SD=0.86)  of  their on  2.58  determined which the  HIV  the  2.52  score  2.69  MSPSS  family  their  o n MSPSS  had  a  43  Women  targeting  s i b l i n g s who w e r e  mean  score  questions.  those  those  HIV status  items  a c t u a l l y had parents  children,  parents  (SD=0.68).  of  a n d women w i t h  status  their  (SD=0.84), w h i l e  of  (SD=0.80)  subjects  women w i t h  of  s i b l i n g s were aware  from f a m i l y members,  unaware  Of  they had d i s c l o s e d to  d i s c l o s e d had a  that  a mean  2.93 2.40  (n=5)  h a d a mean MSPSS f a m i l y  support  Other  2.59 Know (n=14) D o n ' t Know (n=2) 2 . 3 8  Siblings Siblings  had  Significant  Friends  It or  of was  2.3 8 not  siblings.  who i n d i c a t e d t h a t  they  had  disclosed  (SD=0.75), disclosed  while  their  who  reporting that  friends  dealing  those  s c o r e d a mean o f  Subjects to  t h e i r H I V s t a t u s h a d a mean MSPSS s c o r e o f d i d not  2.57  friends,  of  while  2.6  (SD=0.68)  1.83  who w e r e a w a r e o f t h e i r H I V s t a t u s  of  (SD=0.25)  other.  This  score  is  partners,  as  a l l  disclosed  to  their  partners  do n o t  reported  that  present.  The mean  women w a s 2 . 4 0 Pearson's two  of  friends for  a  of  score  have  a  Women  a  partner other  with  average  women  with  they  had  that  for  to  significant  the  women  representative  significant  calculated for  significant  the  data  were  positive  whose  o f women w h o or  spouse  score  at  for  these  i n Table 3.  Only  for  MSPSS  one-tailed know  the  and  The the  to  have  the  score  independent  test.  44  r=0.4361,  crosstabulation  MSPSS of  was  "significant r=0.4692,  of  and to  p<0.05 partner  other"  p<0.05  a the  disclosure/non-disclosure  "friends"  test.  found  c o r r e l a t i o n between  The c o r r e l a t i o n between  a correlation coefficient  tailed  a l l  items  (SD=0.92).  the  knows/doesn't had  MSPSS  variables  and  not  had  disclosed  scored an  reported  The  therefore  did  of  women  partners.  they  variables.  dependent  these  crosstabulations  statistically two  of  not  dealing with  indicative  know i s  r was  the  items  o n MSPSS  (SD=0.90).  partners  o n MSPSS  they  t h e i r HIV s t a t u s  women w h o h a d  f r i e n d s h a d a mean s c o r e o f  2.93  that  (SD=0.7 8 ) .  they had d i s c l o s e d  h a d a mean s c o r e  with  indicate  2.67  for a  score one-  Ten have  subjects been  indicated that  diagnosed  Reasons  for  the  mutually  exclusive,  they  HIV p o s i t i v e  failure  of  that  she  subjects.  Four  they  were  at  that  they  might  be  risk  for  not  feeling  that  and  sick  could  they  were.  they  a  were  woman b e i n g  did  by  not  subjects  reason  not  symptoms  reported  four  as  they  linking  and the  HIV p o s i t i v e  infection,  than  not  subjects,  indicated  that  diagnosis  and included doctors  subjects  were  earlier  earlier  to HIV i l l n e s s reported by f i v e afraid  thought  two think  reported  for  delayed  diagnosis. Four AIDS.  subjects  Of t h e  reported  that  they  remaining thirteen  had been  subjects,  diagnosed  with  two i n d i c a t e d  that  they had experienced i l l n e s s e s associated w i t h HIV i n f e c t i o n , and  four  subjects  question.  It  have  i l l with  been  was  did  p o s i t i v e but  women  may  HIV-related  groups  of  less  Table  4  women, w i t h  have had H I V - r e l a t e d  that  the  women who  than  than  MSPSS  women w i t h  i l l n e s s e s grouped  45  response  to  have  those  women w h o  the  their scores  this  AIDS  (symptomatic)  . Therefore,  support  displays  a  illnesses  experiences  asymptomatic.  perceive  counterparts.  provide  hypothesized  have h a d more d i f f i c u l t HIV  not  or may are  symptomatic asymptomatic  for  AIDS and the together.  these  two  women w h o  Table 4: H e a l t h S t a t u s o f Women b y M e a n M S P S S f o r each Category  AIDS/HIV i l l n e s s  Score  No H I V I l l n e s s  n=6  n=7  Family  2.67  2.29  Friends  2.54  2.71  Other  2.92  2.68  Total  2.71  2.56  Significant  Mean  MSPSS  family  asymptomatic (SD=0.92) (SD=0.71) had  AIDS  and 2.71 had  a  for were  Mean  (SD=0.70).  mean  the  (SD=0.7l).  ( S D = 0 . 7 5)  friends  scores  g r o u p was  asymptomatic  total 2.71  group.  crosstabulations  in  correlations  found.  were  Table  (n=6)  other been  mean  2.29  were  2.54  4.  r  score  score  and  2.56  of  was  calculated  for  (SD=0.81)  No s t a t i s t i c a l l y  46  i l l or 2.92  i l l s c o r e d a mean  MSPSS  (SD=0.63),  Pearson's  MSPSS  and  and  T h e women w h o h a d b e e n  significant  The  symptomatic  2.67  w h i l e t h o s e who h a d n o t  symptomatic the  women  respectively.  (SD=0.28), 2.68  (n=7)  scores  for  of the for the  significant  The they  seven-point  were  scale,  feeling  with  1  indicating obtained. the  calculated year  feeling  f o r the  this  was  The  those  who r e p o r t e d  scale; the  2)  the  "not they  were  women w h o r a t e d total  2.58  (SD=0.76)  for  for the  Scores types  of  on  a  support  "well" seven  1 i n d i c a t i n g not  indicating Counselling alternative  services medicine  and  (SD=0.70)  5.1  was  (SD=1.69)  score  and  3  for  felt  women w h o w e r e  support  than  present.  bad"  "not  for  who  side  the  end of  two  group  with  of  "well"  the  to  women w h o  grouped  well"  well"  those  1)those  on the  scores  not  Responses  were  "not  themselves  satisfaction  collapsed satisfied,  satisfied.  neutral,  groups  and  2.58  group.  point  were  three-point  a s k e d how r e s p o n d e n t s  on the  the  well  were  at  MSPSS  how  SD  good/not  The mean  ( S D = 0 . 7 8)  of  mean  less well  a  2.47  i n t o two g r o u p s :  scale.  were  2  hypothesized that  feeling  felt  of  same  perceive  were  they  score  rated  to  well",  a mean s c o r e  q u e s t i o n were d i v i d e d  responded  3.0  to  data.  might  they  "not  mean  subjects  collapsed  question which  It  well  indicated  with  A  compares  ago.  was  indicating  "well". This  on which  "today"  non-collapsed  one  scale  The  are  legal  a l l had the  (SD=0).  47  a  for  various  three-point  scale,  2 indicating neutral,  means  (n=lO), (n=2)  into  scale  shown  in  services highest  and  Figure (n=3)  mean s c o r e  3 1.  and of  M e  a  3.0_ 2.7_  n  2.4_  S c a  2.1_ 1.8_ 1.5J 1.2_  S c o r e  0.9_ 0.6_ 0.3^ 0.0  ••(•••1 Trad Med Alt Med Dental n=15  2  1 1  Housing Transp 1 6  Childc  17  Legal  1 0  3  Counsel Homem 10  5  Type of Support  Figure  1:  Type o f  Support  b y Mean  48  Scale  Score  of  Satisfaction  Food 1 7  Dental  services  (SD=0.62), an  of  of  (n=16)  were  rated  an  average  and t r a d i t i o n a l m e d i c a l s e r v i c e s  average  rating  (n=ll)  2.87  2.80  was  (SD=0.34).  (SD=0.60).  2.75  transportation satisfaction  Childcare  Mean  with  was  (n=iO)  satisfaction  (SD=0.43),  (n=17)  (n=15)  mean  2.73  were  rated  had  with  a  mean  housing  satisfaction  2.65  homemaking  of  (SD=0.76),  services  with  and  mean  was  ,2.60  (n=5)  (SD=0.80) . A f i v e - p o i n t s c a l e asking respondents they  had  enough  collapsed subject  to  a  money  that  indicated  that  the  subjects  buy  the  have  sometimes a  subject  reported  food  they  that  needed.  neutral  rating,  saying they  Figure Of of the  five  money  needed  indicated  money was  to  buy  respondent  was  food,  a two  and  3  Twelve  of  enough money  to  indicated  she  a n d f o u r women i n d i c a t e d a  "sometimes" 2.65  was  that  available,  u s u a l l y had  One  women w h o r e p o r t e d  Positive  support  information and  enough  they  often  h a d enough money  (SD=0.59),  and  is  for  shown  in  1.  the  the  One  enough money,  score  food  scale.  they  have  mean  i n d i c a t e how  u s u a l l y h a d enough money.  d i d not  The  the  enough  usually  food.  buy  three-point  u s u a l l y d i d not  indicated  to  to  a  they used the  Women's N e t w o r k , two r e p o r t e d  group services,  two p a r t i c i p a t e d  attended  that  retreat.  for  positive  one u s e d t h e i n the  women,  49  three  transportation  telephone  C a t e g o r i e s were  that  services they  utilized allowance,  buddy program and  not  mutually  used  one  exclusive.  Six  women  Vancouver  indicated  Persons  that  with  money f o r a l t e r n a t i v e  AIDS  three  received  legal  services  of  had  aid.  used  had  used  the  something  using not  AIDS the  from her  affected  next in  from t h i s  the  one  had  used  the  bank,  one  buddy system,  and  the  had  food  fund.  at  of  that  Service  they  and  felt  context  of  the  research.  50  to  for of  uncomfortable  and  one  HIV, and  literature  the  improved,  women  r e c e i v e d enough  findings w i l l  of  A couple  s h o u l d be  i n d i c a t e d b y some o f t h e these  turned  f o r more p u b l i c and AIDS  end  participants  workers.  organizations,  of  the  the  whom t h e y  them because she  section  the  people  The need  was  A number  comments  awareness  b y them,  the  results  and  and  they  comments  or healthcare  service  need f o r  friends.  education  reviewed  social  the  received  O n e woman u s e d  the  homemaking s e r v i c e s  f e w women m a d e  see  In  about  friends  women c o m m e n t e d t h a t a  of  mutually exclusive.  ( A p p e n d i x K) .  such as  One h a d  assistance  women i n c l u d e d a d d i t i o n a l  support,  services  advocacy,  one u t i l i z e d  emergency  were not  questionnaire  and  PWA f o r  A I D S V a n c o u v e r . One h a d u s e d  one  mentioned  housing.  F o u r women r e p o r t e d  information services,  Ten  the  one had r e c e i v e d c o u n s e l l i n g ,  finding  used  categories  used  (PWA) S o c i e t y .  medicine,  a n d one h a d r e c e i v e d h e l p PWA d r o p - i n ,  they  did  support  professional  how women  are  participants.  be and  discussed the  and  expected  CONCLUSION The  results  positive  were  tested  for  number  of  limited  will in  its  September  number  the  495  1993  of  forty-eight  Program  at  the  Hogg,  not  antiretroviral  be  had  the  AIDS  variables  could the  be  small  tested  discussed,  for  and  the  perceptions  of  Study methodology w i l l for  future  the  women S i x of or  r e s p o n d e n t s was  for  had  tests  Disease enrolled  for  also  research  drug and  11.5% o f  program  survey  experienced  51  Control,  in  were  BC  program  to One  Drug  HIV/AIDS  (Dr.  The  survey  although  involved in  of  illnesses  in  HIV/AIDS  distributes  respondents  size,  1993).  1995).  treatment  i n v o l v e d i n the the  women  i n the  (n=l7),  sample  t h e s e women,  participants  for  small  the  from  Excellence  communication,  whether  therapy  symptomatic.  they  of  HIV  HIV/AIDS.  women a r e  personal  Since  infections,  because  be  HIV p o s i t i v e  BC C e n t r e  determined  program.  which they  r e p r e s e n t e d 73.9% of  respondents would represent was  women w h o a r e  respondents'  survey  (BC C e n t r e  hundred  Robert  to  implications with  t h e s e women n o n e t h e l e s s of  the  of  Results  Although the  3.6%  w i l l  reviewed.  women l i v i n g  Discussion of  extent  (n=l7).  of  be  study  significance  statistics  considered  or  the  significance  support  regarding  in  participants  descriptive  be  from t h i s  statistical  statistical  social  obtained  drugs  it the for  opportunistic are  likely  indicated related  to  to that HIV  infection,  and. t h e s e women w o u l d  receiving  treatment  through the  research  optimally  has  given  the  relatively  estimated  to  be  a  Seven  of  $19,999),  the  rest  the  household  did  of  not  in  the  necessarily  were  less  (eleven)  investigation needs. women  This who  resources, or  provide  to  that  and be for  Gibson,  1991).  persons  who a r e  to  themselves Survival  has  (Hogg e t  one o f  n e c e s s a r i l y have the  participants  information  (above  women  and  needed  their  been  al.,  access  i n the  52  of  this these  of the  study  household  incomes  requires  further  short  i n the  have  -  with  some  believed  This  assertion  access  $40,000),  Most  falling  may  ($6,300  Although  their  about  feasible.  levels  needs.  in  meeting  literature  limited  families  that  financial  support  shown t o b e  services, (Stuntzner-  compromised f o r  lower incomes,  than  those  1994) .  A l t h o u g h a h o u s e h o l d i n c o m e may b e may n o t  of  Schechter,  r e l a t i v e l y high,  the  HIV p o s i t i v e w i t h  w i t h h i g h e r incomes  are  be  their  positive  unable  women who  inadequate.  h i g h l i g h t s the HIV  of  lack  i n t o why incomes a r e  are  (400)  (Strathdee,  indicated that  than adequate or  But  i n between.  i n c o m e s w e r e a d e q u a t e t o meet participants  30.  levels  appeared mean  least  low income  high  participants  incomes  at  study remained  women r e p o r t e d  the  women  of  BC  1994),and the  and s i x r e p o r t e d  the  size  number  HIV p o s i t i v e  t h e s e women's e x p e r i e n c e s ,  the  H I V / A I D S D r u g P r o g r a m . Survey-  sample  small  Hogg & O ' S h a u g h n e s s y ,  c o m p r i s e 4.1% of  to  r e l a t i v e l y high, this  open-ended  money,  as  comments  a woman noted  by  (Appendix  K).  This participant  husband's, money  to  a n d she was buy  the  supplements. access  to  their  said that  this  forced to  things  High  she  household  money  the  for  household  ask  other  needed, incomes  women,  her  f a m i l y members  for  such  as  nutritional  therefore  limiting  do  their  not  mean  control  over  lives.  With regard indicated  needed,  Five  women  money,  or  further  to  that  they  food,  they with  the  m a j o r i t y of  u s u a l l y had a  mean  of  indicated  that  they  sometimes  2.65  on  as  nutrition,  illnesses  may  role  preventing  malnutrition  control play  of monetary  a  role  a  in  food.  resources  in  women's  the  study  ability  Again,  s h o u l d be  access  York  to  enough requires to  meet  HIV-related health  and  Women a n d  the  issue  examined, food  food  scale.  have This  maintaining  1993).  buy the  during  (The ACT UP/New  Stine,  participants  d i d not  and the  requirements  play  study  three-point  usually  nutritional  1990;  a  h a d enough money f o r  investigation,  Group,  the  enough money t o  changing  Book  i n c o m e was  and  as  AIDS  of  the  this  may  nutritional  supplements. Eleven  of  c u r r e n t l y had a partner they had the positive. persons social five  or  same p a r t n e r The  spouse. at  literature'  may b e a b a n d o n e d network  participants  the  women w h o h a d d i f f e r e n t  Seven of  suggests  1988;  partners  or  they said  diagnosed HIV  upon  diagnosis,  or others  Manthorne,  partners  53  that  that  t h e s e women  time t h e y were  by t h e i r  (Kowalewski,  reported  1990).  spouses at  in  their Of  the  the time  of  their  diagnosis,  ended  the  their  partner  but  a  the  as  the  research  had  children  was  woman's  decisions  about  to  In  to for  a l l  disclose  may b e  mother's  the  the  14  her  to  needs.  of  to  that  can  be  example,  disclose  to  (Manthorne,  1990;  a an  women younger  children inadvertently telling  HIV status  HIV  participants'  suggests  For  HIV  their  children  reasons.  hesitant  with  participants  study  literature to  the  respect  children  of  The  numerous  HIV/AIDS  study, their  it  had  revealing of  not  support  disclosed.  one's being  that  was  HIV s t a t u s  w o u l d p e r c e i v e more  others  of  into  relationship  support  with Of  their  not  relationship  primary  needed  told  was  r e l a t i o n s h i p upon HIV  this  children.  age  avoid these  this  terms  is  died,  others  Rudd  and  who  had  1992).  disclosed  who  this  and severe  twelve years.  their  Taylor,  stress,  their  The a v e r a g e  children  with  needed  had that  had  deaths  is  a p o s i t i v e woman's  happens  status.  with  diagnosis  More  six  one  of  study.  d i s s o l u t i o n of  women a n d  excruciating  time  partner  women r e p o r t e d  AIDS-related  investigation  children,  living  the  the  were  i n increased  Similar  of  her  these  and what  result  with  at  dynamics of  diagnosis,  positive  not  indicated that  Three  spouse  in this  partner,  may  or or  determined of  one  relationship.  whether  area  only  they  hypothesized to  persons  from The  HIV status  can  abandoned,  or  are  rendered  in their  these people literature be  extremely  causing incapable  54  that  so of  women social than  network  the  women  suggests  that  frightening  much  distress  offering  in to  support  (The H u l l - Y o r k study  suggests  family  and  the  MSPSS  that  Team,  women  friends,  meaningful." for  Research  (p.  in  15).  revealed  scores  of  woman's  partner.  percent  of  found  the  one  significance  findings  variance  being  a  that  family  at  Former  or  the  or  their  score  2.40,  someone  member  other.  other  spouse  was  at  the a  w i t h 44 a n d  47  the  five  relatively  than  friend  is  may  a  a partner  Thus,  high.  the  This  spouse or partner,  being  as  a  referred  is  reported mean  women w h o d i d  considered be  statistical  present  HIV s t a t u s .  for  other  partners  and  for  and  r  to  to  their  partners,  friends  disclosure/nondisclosure  that  MSPSS s i g n i f i c a n t  to  of  knew o f  more  Pearson's  only  finding  a l l women w i t h a p a r t n e r  suggest  significance  were moderate,  to  that  partner  and  explained.  limitation  i n the  with  disclosure/nondisclosure  statistical  Both  "deeper  significance using  between  (1994)  relationships  became  disclosure/nondisclosure  However,  have  However, A l l e n ' s  their  time,  Testing  crosstabulation  scores  1993).  not  might  such  as  significant to  in  this  result. Of  the  significant or  had  not  disclosure significant results  eleven  women  difference disclosed and  had  children,  i n MSPSS s c o r e s to  their  non-disclosure  differences.  do n o t  who  indicate  It  for  the  children. to  parents  there  or  women w h o  had  scores  siblings that  w h i c h women a c t u a l l y  55  no  MSPSS  s h o u l d be noted  siblings.  was  had  the  had  for no  present  parents  or  The  examination  perceive her  more  others  needs.  is,  her  to  positive  her  may  inability  of  variables  she  others  to  should  longitudinal discerning  and  the  be  will, as  i n her the  she  social  support  related from  experienced study with  In  AIDS,  may  asymptomatic  or  the  may  may  a woman d i s c l o s e s  just  These  be  as  be  and  a  good  (Sample,  HIV s t a t u s  r e s p o n d as  isolated  in  support  not  her  and  useful  some.literature  that  they  had AIDS,  HIV i n f e c t i o n relationships  HIV-related illnesses.  hypothesis  the  she  and  and  hopes  they  misunderstood  disclosure.  to  their  fact,  n e t w o r k do n o t  Women w h o r e p o r t e d illnesses  by  perceived  disclosure  her  investigated,  studies  between  to  HIV status  HIV s t a t u s .  closely  a  supportive  her  woman m a y f e e l  d i d p r i o r to  a  with  support.  people  of  deal more  i f  opportunity  abandonment  predictor  i f  the  fear  retrospective  that  simultaneous  not  relationship  suggests  disclosed  appropriate  of  might  support:  may p r e s e n t support  has  would  Additionally,  1992)  it  woman  a  predict  disclosure  disclosure. of  a  whom s h e  perception  predict as  may  with  the  to  that  p o s s i b i l i t y of  HIV s t a t u s ,  provide  woman,  the  disclosure  Conversely,  relationship  hypothesis  from persons  presents  That  woman r e v e a l s for  the  support  HIV status  equation.  of  that  symptomatic  experience  women b e c a u s e  more of  56  did  than This  not  is  who  women,  less  had  not  to  the  contrary  support  stresses  experienced  perceive  women  positive  social the  or had  or  needs  brought  women than on  by  illness.  Zich  and  Temoshek  AIDS and H I V - r e l a t e d The  examining the  adequacy of  to  were  results  support  support  other or  to  forms.  present prior  fact,  higher  they  offer  either  may  rally  of  The l a c k  have  women.  In  terms  results  a  of  social  of  cases,  MSPSS  been  unwell,  support,  or  problems  into  the  A  need  consumers  calculated, subscales  and  of  2.5  or  participants support,  scores a l l  family, higher. would  because  for  scores  and the  have  than  with  therefore i l l woman,  support  in  various  "visible",  HIV/AIDS,  experiences and  not  be  for  and  was  of  AIDS to  service  or  include programs,  total  scale  anticipated lower  and  other that  were  for were  the  the at  study  perceptions  o f t h e m a n y c h a l l e n g e d f a c e d b y women  57  the  participants  significant  reported  supports,  s y m p t o m a t i c women.  study  and  these  HIV p o s i t i v e  present  i n support  the  of  community  diagnosis  a l l  friends It  not  f o r a s y m p t o m a t i c women m a y  services  requirements.  MSPSS  do  women w h o  becoming  w h i c h may p r e v i o u s l y h a v e o n l y t a r g e t e d Mean  not  scores  t h a t a l l women w h o a r e  HIV disease  while  as  previously.  insight  a s y m p t o m a t i c women a s  least  study,  i n most  woman l i v i n g  than  may s u g g e s t  support  symptoms  more  around  some  with  s y m p t o m a t i c women p e r c e i v e d  o f h i g h e r MSPSS s c o r e s  provide  g a y men  to HIV status,  mean  the  health  p r o v i d e more a s s i s t a n c e  have  In  Perhaps  because  By v i r t u e  others  the  that  p e o p l e may h a v e b e e n m o r e a v a i l a b l e t o  able  also  the  support  had  a s y m p t o m a t i c women. more  of  this.  symptomatic  found  i l l n e s s e s perceived previous supports  inadequate.  appear  (1990)  of  living  with  HIV/AIDS,  1990;  MSPSS  indicated  as  a  Dahlem  by  et  a l . ,  MSPSS,  but  account  for  perceived  by  study  sensitive  enough  of  other  studies been  Dahlem,  Zimet  and  of  a  social  found.  perceived using  noted  the  (Zimet,  Walker  (1991)  desirability bias  in  Therefore,  other  factors  r e l a t i v e l y h i g h l e v e l s of  social  support  participants.  to  (Manthorne,  The h i g h l e v e l s o f  has  was n o t  the  literature  instrument  possibility  this  the  subjects  1988).  the  in  1991).  measurement  investigated  must  suggested  Stuntzner-Gibson,  support  the  as  discern  when  Perhaps  the  support  is  MSPSS  is  lacking  not  for  a  p o s i t i v e woman. Mean s c o r e s support  of  from other  mean b e l o w 2 . 6 mean  scores  support higher the  or  than  The  very the  caregivers  for  "external" scales  adequate example, even  ratings  to  ten  of  This  2.80.  children, of  and  with  no  of  the  none  resource  a l l sources  example, may  for  or were  h a d one  indicate  of  that  arrangements,  themselves  are  the  therefore  were  not  not  be  childcare.  positive  17  a  childcare  participants  satisfaction  the  from  at  their  examine  with  for  traditional medical  though  support  satisfactory  sources  of  Therefore,  Childcare,  study  scales  be h i g h as w e l l ,  dissatisfaction  anticipated. mean  to  scale.  Perception of  that  rating  on n o n - s t a n d a r d i z e d  tended  3-point  indicated  women h a v e  perhaps  sole  sources  on a  source.  highest  either  satisfaction  with  women's  services  study  58  supports  may  experiences.  rated  participants  a mean  of  indicated  For 2.87, that  they  believed they  earlier  than  they  doctors  had  not  However,  the  were.  and  women  diagnosis.  In  participants  were  may o f f e r  a  maintenance counselling  Implications  of  and  the  to  be  lack  (Allen,  1994;  their  the  the  through  as  of  of  medical their  delay the  of  study  settings  clients,  which  both  support  in  through  groups.  Research  of  high  response  clinical  with  as  with  and  variability  what with  it  is  in this  in  in  The r e s u l t s  suggested  call light  appear  about  the  i n the  literature  Canada,  1992;  Manthorne,  comments made  the  survey  suggested  namely d e s c r i p t i v e ,  59  data,  the  c o u l d be  study  HIV/AIDS  Welfare  some o f  question  reported perceived  significance.  women l i v i n g Health  l e v e l s of  s i g n i f i c a n c e of the  statistical  i n mind,  used,  majority  emotional  open-ended  analysis  terms  well  to  this  in  as  as  Bearing  past  health,  1990), the  well  time  t r a d i t i o n a l medicine, and not  to  lack  of  a  their  of  reporting  support  for  HIV/AIDS.  specify  of  inconsistent  experiences  not  their  on  recruited  or support  of  been  with  deal  i n t o question the of  have  HIV p o s i t i v e  said that  symptoms did  may  The r e l a t i v e l y c o n s i s t e n t support  five  scales  addition,  great  diagnosed  ten,  their  with  experiences  been  Of t h e s e  linked  experiences  negative  have  satisfaction  restriction, present  could  is  too  (see that far  in  response  Appendix the ahead  K) .  level of  of  what  is  required i n the  women w h o a r e The  of  may h a v e  investigation  social  little  may b e  required  to  d e t e r m i n e what  the  of  support,  exploratory insights HIV  work  positive.  tested  and  into  i n t o the  obtained  through  v i a survey  respondents,  which  further  limited  the  rendered  really  how  this  it  for  exploratory  defined  may  of  case  which  in  the  further level  by  provide  support  social at  them.  of  new  t o women w h o  support a  More  valuable  might  later  time  were a l s o confounded by the  small  may  are be be  research.  and the  to  necessity to  test  statistical significance,  for  to  hold  intended  population  the  to  a  This  focus is  involve  analysis  of  This,  scores,  variability.  inappropriate.  investigator  c o l l a p s e support  number  response  proposal  in  presented  n e e d e d b y t h e s e women i n  is  area  studies  as  the  Definitions  limited  the  is  at  social  ability  respondents  support  t h e s e women, a n d  meaning of  The s u r v e y r e s u l t s of  meaning of  support,  meaning f o r  research way  the  HIV p o s i t i v e .  variables  survey,  examination of  group  in  of  unfortunate,  members  results,  to  of  turn,  study as  the  provide  a  and  the study  richer  interpretation. Manson-Singer research include of  & Sullivan  involving  persons  or  death;  and  the  loss  outline  living  l i m i t a t i o n s i n access' to  c o n f i d e n t i a l i t y ; the  illness  (1993)  this  of  need  60  with  issues  related  HIV/AIDS.  These  population for  reasons  community contacts  for  to  through  c o n t i n u a l adjustment  and  sensitivity of  this  of  of  development  also  of  through  the  of  subjects  the  for  liaison  which  recruitment  of  The  limited  the  in  committed to a n d many o f HIV/AIDS.  many o f  were  could was  study,  of as  are  such as  the  the  staff  in this  such study.  as "the Such a  rate  (100%) 61  was  could  with  "Why a n  HIV+  and  outline  HIV/AIDS of  PWN h a s research  obtained  be  living  face  additional  research,  nor e f f i c a c i o u s i n terms of  usual  volunteers,  L,  The s t r a i n  because  particularly  Network are  with  the  limited  their  are  included i n Appendix  organizations  response  study,  which  involvement i n external  appropriate,  creating  Network's pamphlet,  activities.  the  organizations  N e t w o r k was  w h i c h women l i v i n g  their  obvious  to  the  are  smaller  l i a i s o n s were  the  which  researcher  i n addition to  many o f for  was  student  person-hours  women w o r k i n g  activities,  best  done  research  Limitations in  of  devote  the  issues  study  the  The  of  HIV/AIDS.  contacted,  personnel.  amount  limit  The  any  they  d a i l y which  neither  in  needs  studies  these  with  design.  involved  the  in  conduct  this  to  realities  governmental  for  due  women  Not Here", the  to  Some o f  P o s i t i v e Women's  the the  study  Excerpts from the  poignantly  HIV/AIDS  were  subjects  workloads.  Woman i s  during  directly  time  discussed.  to  importance  s t u d y o f women l i v i n g  which  necessity  with  women r e c r u i t e d  anticipated  recruitment  by  is  in this  The number  being  living  methods  The  and methodology i n o r d e r  highlighted  not  research  population.  persons  meaningful  than  science  particular  inclusion  are  social  on non-  been  made  burden  is  results. through  the  personal  contacts  following  recruitment  case,  HIV Care U n i t ) .  the  the  implications  professionals, well.  very  personal against  the  possible,  what  HIV/AIDS.  of  is  (Strathdee  et  a l . ,  significant  receiving  treatment  (Dr.  Robert  respondents  considered,  they  survey  understanding HIV/AIDS.  for  rate  who  was  about  this  it  who  The  H I V (14 8)  also  or  are  represent provide  experiences  of  most  of  62  a  (17),  but  as  c o u l d be of  with  well  seen  those  1995).  symptomatic  starting  results  these  to  women  HIV/AIDS  4.1% o f  the  (400-600),  small  women who a r e the  contribute  i n BC  the  rate  living  communication,  AIDS  would s t i l l  does  (11.5%)  through  weighed  population.  small  respondents  proportion  be  with  response  are  relatively  as the  improved  must  t o be HIV p o s i t i v e s t i l l  care  methodological  best  study,  women  to  interviewing  vastly  the  this  g i v e n as  project,  one-on-one  costly,  of  have  Although  scale  important  Hogg, p e r s o n a l  results the  an  this  health  a difficult-to-access  1994).  a  Program  is  (in  responsibilities  r e s p o n d e n t s was  is  represent  The  of  o f women e s t i m a t e d growing,  as  obtaining  known  The number  although  only  This  limitations  l i t t l e  well  be  for  job  larger  Although  value  the  a  as  particularly for  Despite  number  for  other  interviews,  organization  research  many  response  contact.  telephone  a liaison  such  time-intensive. as  via  C o n s i d e r a t i o n must  subjects,  consideration,  to  of  who h a v e  of  women  through  Particularly  recruitment is  with  Drug If are  women.  point  for  living  with  were  not  statistically more  support  disclosed was  s i g n i f i c a n t i n the  in  her  the  prompts social  from  HIV status,  d i r e c t i o n of  the  statistical  s h o u l d be  and  that  study  HIV/AIDS,  as  appropriate  which to which  with  positive  trendline  the  f o r most  data  (see  level  too  of  high.  of  the  data  Table  3).  This  significance  Despite  clinical  HIV p o s i t i v e  have  a  may  to  of  the  i n f l u e n c e  lack  of  disregarded, significance,  had  c o n t i n u i n g need of  women  still  support.  research  The  social  who  exist  methodology  Since  very  to  l i t t l e  identify  are  about  living  their  importance  with  this  workers  are  the in  s o c i a l  emotional/psychological  experiences turn,  be  of  used  with  as  and i n s t r u m e n t a l  a  for,  use  of  population  has  often  in  direct  provided i n research  p o s i t i v e women.  p o l i c y ,  63  and  need  of  t h e s e women, a u n i q u e o p p o r t u n i t y i s  then,  for  them.  many q u e s t i o n s  clarify  had  of  s h o u l d not be  light  woman  c o o p e r a t i v e l y d e s i g n and conduct meaningful  may  research  a  hypothesis  in  experiences  stressed.  contact  are  points  perception  whom  may b e  considered  devoted to  the  been  the  research  women who  describe  and  the  s i g n i f i c a n c e , the  but  This  to  q u e s t i o n of whether  science  research  persons  examination of•perception of  lobbying  and support  to  tool  The to  inform  services.  BIBLIOGRAPHY Allen, J . 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New Y o r k State J o u r n a l of Medicine. £fl(12), 619-620.  73  Appendix A : A p p r o v a l and Agreement  74  from  Liaison  Organizations  Appendix  B: Approval  from  UBC B e h a v i o u r a l  Committee  78  Sciences  Screening  Appendix  C:  Initial  Letter  to  Members  80  Positive  Women's  Network  POSITIVE  WOMEN'S  NETWORK  1107 Seymour Street, Vancouver, B.C. V6B 5S8 Tel: (604) 893-2200 Fax: (604) 893-2211  T H E  U N I V E R S I T Y  O F  B R I T I S H  C O L U M B I A  School of Social Work 2080 West Mall Vancouver, B.C. Canada V6T 1Z2 Tel: (604) 822-2255  Fax: (604) 822-8656  Dear Positive Women's Network Member: This is to let you know about and ask for your participation in a research study looking at the social support needs of women who are HIV positive. Very little is known about the experiences of positive women, and this study will be one of the first to provide this type of information. This letter has been sent to you by the Positive Women's Network on behalf of the University of BC researchers to let you know about the study. The researchers do not have access to your name, address or phone number. If you participate in the study, all information will be confidential. Other HIV positive women have been involved in developing the questionnaire for this study, and the questionnaire will take about 30 minutes of your time to fill out. The survey results will be written up in the Positive Women's Network and Vancouver PWA newsletters, and you will also be asked if you would like to participate in a small group to discuss the results with the researchers. I, Iris Brendle Moczuk, am conducting the study, and I am a Social Work student at the University of BC, where my Masters degree work is focussing on women who are HIV positive. I will be using the results of the survey in my thesis work. Only I, and my research professor, Dr. Sharon Manson Singer, will have access to your completed questionnaire, and all questionnaires will be destroyed once your responses have been compiled.  81  I'm interested in participating in the study. Please check ONE of the options. I would like to have the questionnaire sent to me. My address is: Name: Address:  I would like to have the student researcher, Iris Brendle Moczuk, call me to do the questionnaire by telephone. Name or initials: Convenient days to call: Convenient times to call:  P L E A S E RETURN THIS P A G E IN THE S E L F - A D D R E S S E D , ENVELOPE PROVIDED. THANK YOU.  83  STAMPED  Appendix D:  Explanation  of  Study  W O M E N W H O A R E HIV POSITIVE IN T H E L O W E R M A I N L A N D : A SURVEY OF SOCIAL SUPPORT NEEDS Outline of points to cover with prospective study participants -study being conducted by a Masters of Social Work student (Ms Brendle Moczuk) from the University of British Columbia -survey questionnaire asks about the experiences of women who are HIV positive -most of the questions deal with issues around support: from people and services -very little is known about the experiences of women who are HIV positive, and therefore this type of information is important for organizations providing services for women who are positive in order to improve services, or gain funding for services -questionnaire developed with input from women who are HIV positive, and the project is being conducted in cooperation with St. Paul's Hospital Infectious Disease Clinic, BC's Children's Hospital HIV Care Unit, and the Positive Women's Network (you can talk about your involvement if you have been involved) -survey will take about 30 minutes to complete, and the results will be confidential -Choices regarding survey completion: a) participant can be given/sent the questionnaire package, fill out the survey herself, and send it back to the researchers in a postage-paid envelope b) participant can give a name (or pseudonym), contact phone number and appropriate days and times to call, and the student researcher will call her and complete the questionnaire over the phone with her -if potential participant has already been told about the study through another organization, or is already participating, they should not fill out the questionnaire again -the researchers would like the participants to be involved in the analysis of the data. To facilitate this, the participants will be asked if they would like to be contacted to participate in a small focus group to discuss the results of the survey. If the participant expresses interest, the student researcher, Iris Brendle Moczuk, will contact the participant in June 1993, to arrange the focus group. -participation in the study or the focus group is entirely voluntary, and participants can withdraw from the study at any time. Services and treatment the participant is currently receiving will not be affected.  84  Appendix  E: Survey  Cover  Letter  85  T H E  U N I V E R S I T Y  O F  B R I T I S H  C O L U M B I A  School of Social Work 2080 West Mall Vancouver, B.C. Canada V6T 1Z2 Tel: (604) 822-2255  Fax: (604) 822-8656  Women Who are HIV Positive in the Lower Mainland: A Survey of Social Support Needs Dear Survey Participant: This survey asks about your experiences as a woman living with HIV. It focusses on the support you receive from people and services. This questionnaire has been developed with input from other women who are HIV positive. The questionnaire is being given out by people working with HIV positive women. The survey will take about 30 minutes to fill out. The survey is confidential: there are no numbers or names on it to identify you. The researchers do not know who you are. Some of the questions ask about personal or sensitive information. If you find that you need someone to talk to, the Positive Women's Network (893-2200) and the AIDS Vancouver Helpline (687-AIDS) are available. If you complete the questionnaire and return it in the large postage-paid envelope, it will be assumed that you agree to participate in this study. Only myself, and my professor, Dr. Sharon Manson Singer will have access to your completed questionnaire. The results of this survey may be used by organizations such as the Positive Women's Network and the Vancouver Persons with AIDS (PWA) Society to improve services to women who are HIV positive. If you would like to discuss the results of the study with the researchers in a small group, please read and return the other letter in this package, in the other envelope provided. We hope to have the results by July 1993.  86  Appendix F : Consent  f o r Telephone  88  Intervi  THE UNIVERSITY  OF BRITISH  COLUMBIA  School of Social Work 2080 West M a l l V a n c o u v e r , B . C . C a n a d a V 6 T 1Z2 T e l : (604) 822-2255  F a x : ( 6 0 4 ) 822-8656  Women who are HIV Positive in the Lower Mainland: A Survey of Social Support Needs CONSENT FORM Dear Participant: We are conducting a survey which asks about your experiences as a woman living with HIV. It focuses on the support you receive from people and services. The survey has been developed with input from other women who are HIV positive. The survey will be done over the phone with you by the student researcher, at a time you find convenient. It will take about 30 minutes of your time. You have the right not to participate in this study. You can refuse to answer questions, and can stop participating at any time without any consequences. The services you receive will not be affected. Your answers will be kept confidential, and no names or numbers to identify you will be used. Only myself, and my professor, Dr. Sharon Manson Singer will have access to your completed questionnaire. The results of the survey may be used by St. Paul's Hospital and BC's Children's Hospital, and organizations such as the Positive Women's Network to improve services to women who are HIV positive. If you have any questions or comments about this study please feel free to call us at the numbers below. 89  Appendix G: Survey,  and Focus Group Contact  91  and Consent  Forms  WOMEN WHO ARE HIV POSITIVE IN THE LOWER MAINLAND: A SURVEY OF SOCIAL SUPPORT NEEDS  A. Background Information Your answers to these questions will help to understand your responses to other items in this questionnaire. For each of the following questions, please CIRCLE your answers, and/or fill in the blanks provided.  1) Do you live in the Lower Mainland? t.Yes 2. No  2) What is your age? 1. under 20 years 2. 20-29 years 3. 30-39 years 4. 40-49 years 5. 50-59 years 6. 60 years and older  3) What is your highest level of education? 1. 2. 3. 4. 5. 6. 7.  some elementary school completed elementary school some high school completed high school vocational training / apprenticeship some college or university degree from college or university  92  4) What is your annual household income? 1. less than $6,300 2. $6,300 to less than $20,000 3. $20,000 to less than $30,000 4. $30,000 to less than $40,000 5. $40,000 to less than $50,000 6. $50,000 or more  5) How many people, including yourself, are supported by the income level above?  6) What are the sources of income in your household? (circle as many as needed) 1. income assistance 2. maintenance payments 3. disability pension 4. employment 5. savings 6. credit 7. other (please describe):  7) Do you work outside of your home? 1. No 2. Yes  93  8) What type of housing do you have? 1. 2. 3. 4. 5.  own home rent home live in co-op housing live with parents other (please describe):  9) On a scale of 1 to 7, how adequate is your income? 1 very inadequate  2  3  4 neutral  5  10) What is your primary ethnic or cultural group? 1. Aboriginal 2. Chinese 3. Korean 4. Phillipino 5. Fijian 6. Japanese 7. Black 8. Hispanic (Latina) 9. South Asian 10. Jewish 11. White (Caucasian) 12. Other (please describe):  11) What is your sexual orientation? 1. Heterosexual (woman to man) 2. Lesbian (woman to woman) 3. Bisexual (woman to man or woman to woman) 94  6  7 very adequate  12) Were you an injection drug user when you found out that you were HIV positive? 1. No 2. Yes 13) Are you an injection drug user now? 1. No 2. Yes 14) Do you have a partner/spouse now? 1. No (go to question 15) 2. Yes If yes, was this person your partner/spouse when you were diagnosed as being HIV positive? 1. Yes (go to question 16) 2. No (go to question 15)  15) When you were diagnosed as being HIV positive, did you have a partner/spouse? 1. No (go to question 16) 2. Yes If yes, what happened to your relationship with this person? 1.1 ended the relationship 2. partner/spouse ended the relationship 3. made decision together to end relationship 4. partner/spouse died 5. Other (please describe):  95  (  16) If you have a partner/spouse now, is your partner/spouse HIV positive? 1.No 2.1 don't know 3. Yes  17) Do you have any children? 1. No (go to question 19) 2. Yes If yes, how many children do you have? What are the ages of your children?  18) Are any of your children HIV positive? 1.No 2.1 don't know 3. Yes If yes, how many of your children are HIV positive?  19) When were you diagnosed as being HIV positive? (fill in as much of the date as you know) Year  Month  96  20) Who knows that you are HIV positive? (Circle as many as necessary) 1. Nobody 2. Partner/Spouse 3. Child(ren) 4. Parent(s) 5. Brother(s)/Sister(s) 6. Friend(s) 7. People I work with 8. Other people (please specify):  21) Do you think that you could have been diagnosed earlier than you were as being HIV positive? 1. No (go to question 22) 2. Yes If yes, for what reasons were you not diagnosed earlier? (circle as many responses as needed) 1. My doctor(s) did not think my symptoms were related to HIV. 2. I wasn't feeling sick. 3. I was afraid to find out I might be HIV positive. 4. I didn't think that I was at risk of being infected by HIV. 5. Other (please describe):  97  22) Have you been diagnosed as having AIDS (acquired immunodeficiency syndrome)? 1. No  If no, have you had any illnesses related to HIV infection? 1. No (go to section B) 2. Yes (go to section B)  2. Yes  Year  If yes, when were you diagnosed as having AIDS? (Fill in as much of the date as you know) Month  98  B.  Your Health  Please CIRCLE the number which corresponds to your answer for each question.  1) Please circle the number which best describes how you are feeling today : 1 not well at all  2  3  4 not good/ not bad  5  6  7 very well  6  7 very well  2) How well did you feel one year ago?  1 not well at all  2  3  4 not good/ not bad  5  3) Do you use any traditional types of medicine (for example: seeing medical doctors, using prescription drugs)? 1. No 2. Yes  1 very unsatisfied  If yes, how satisfied are you with these traditional types of medicine you use? 2  3  4 neutral  5  99  6  7 very satisfied  4) Do you use any alternative types of medicine (for example: acupuncture, homeopathy, herbal therapies)? 1. No 2. Yes  1 very unsatisfied  If yes, how satisfied are you with these alternative types of medicine you use? 2  3  4 neutral  5  6  7 very satisfied  5) Do you use any dental services? 1. No 2. Yes 1 very unsatisfied  If yes, how satisfied are you with these dental services? 2  3  4 neutral  5  100  6  7 very satisfied  C. Social Support The questions in this section ask about people and services, and how they support you. Please CIRCLE your answers. 1) How satisfied are you with your housing situation? 1 very unsatisfied  2  3  4 neutral  5  6  7 very satisfied  6  7 very satisfied  2) How satisfied are you with the transportation you use? 1 very unsatisfied  2  3  4 neutral  5  3) Do you have any children? 1. No 2. Yes  1 very unsatisfied  If yes, how satisfied are you with the child care you have for your children? 2  3  4 neutral  5  6  7 very satisfied  4) Do you use any legal services? 1. No 2. Yes 1 very unsatisfied  If yes, how satisfied are you with these legal services? 2  3  4 neutral  5  101  6  7 very satisfied  5) Do you use any counselling services? 1. No 2. Yes 1 very unsatisfied  If yes, how satisfied are you with these counselling services? 2  3  4 neutral  5  6  7 very satisfied  6) Do you use any homemaker services? 1. No 2. Yes 1 very unsatisfied  If yes, how satisfied are you with these homemaker services? 2  3  4 neutral  5  6  7 very satisfied  7) Do you use any shopping services? 1. No 2. Yes 1 very unsatisfied  If yes, how satisfied are you with these shopping services? 2  3  4 neutral  5  6  7 very satisfied  8)Do you have enough money to buy the food you need? 1 never  2 seldom  3 sometimes  4 often 1 0 2  5 always  We are interested in how you feel about the following statements. Read each statement carefully. Indicate how you feel about each statement. Circle the 1  if you V e r y S t r o n g l y D i s a g r e e  Circle the 2  if you S t r o n g l y D i s a g r e e  Circle the 3 if you M i l d l y D i s a g r e e Circle the 4 if you a r e N e u t r a l Circle the 5 if you M i l d l y A g r e e Circle the 6 if you S t r o n g l y A g r e e Circle the 7 if you V e r y S t r o n g l y A g r e e  1) There is a special person who is around when I am in need. 1 very strongly disagree  2 strongly disagree  3 mildly disagree  4 neutral  5 mildly agree  6 strongly agree  7 very strongly agree  2) There is a special person with whom I can share my joys and sorrows. 1 very strongly disagree  2 strongly disagree  3 mildly disagree  4 neutral  5 mildly agree  6 strongly agree  7 very strongly agree  4 neutral  5 mildly agree  6 strongly agree  7 very strongly agree  3) My family really tries to help me. 1 very strongly disagree  2 strongly disagree  3 mildly disagree  103  4) I get the emotional help and support I need from my family. 1 very strongly disagree  2 strongly disagree  3 mildly disagree  4 neutral  5 mildly agree  6 strongly agree  7 very strongly agree  5) I have a special person who is a real source of comfort to me. 1 very strongly disagree  2 strongly disagree  3 mildly disagree  4 neutral  5 mildly agree  6 strongly agree  7 very strongly agree  4 neutral  5 mildly agree  6 strongly agree  7 very strongly agree  5 mildly agree  6 strongly agree  7 very strongly agree  6) My friends really try to help me. 1 very strongly disagree  2 strongly disagree  3 mildly disagree  7) I can count on my friends when things go wrong. 1 very strongly disagree  2 strongly disagree  3 mildly disagree  4 neutral  104  8) I can talk about my problems with my family. 1 very strongly disagree  2 strongly disagree  3 mildly disagree  4 neutral  5 mildly agree  6 strongly agree  7 very strongly agree  6 strongly agree  7 very strongly agree  9) I have friends with whom I can share my joys and sorrows. 1 very strongly disagree  2 strongly disagree  3 mildly disagree  4 neutral  5 mildly agree  10) There is a special person in my life who cares about my feelings. 1 very strongly disagree  2 strongly disagree  3 mildly disagree  4 neutral  5 mildly agree  6 strongly agree  7 very strongly agree  5 mildly agree  6 strongly agree  7 very strongly agree  11) My family is willing to help me make decisions. 1 very strongly disagree  2 strongly disagree  3 mildly disagree  4 neutral  105  12) I can talk about my problems with my friends. 1 very strongly disagree  2 strongly disagree  3 mildly disagree  4 neutral  5 mildly agree  6 strongly agree  7 very strongly agree  We would like to know if you use any services provided by the organizations below. Please circle your answers and/or fill in the blanks.  1) Do you use any of the services provided by the Positive Women's Network? 1. No 2. Yes  If yes, which services do you use? (circle all that you use) 1. Support group for positive women 2. Information services 3. Drop-In 4. Child care 5. Transportation Allowance 6. Telephone "Buddy" 7. Retreat 8. Other (please describe):  106  2) Do you use any of the services provided by the Vancouver Persons with AIDS (PWA) Society? 1. No 2. Yes  If yes, which services have you used? (circle as many as you use) 1. Money for alternative medical care 2. Help in finding housing 3. Counselling services 4. Drop-In 5. Advocacy 6. Legal Aid 7. Food Bank 8. Other (please describe):  3) Do you use any of the services provided by AIDS Vancouver? 1. No 2. Yes  If yes, which services do you use? (circle as many as you use) 1. Food bank 2. Information services 3. Buddy system 4. Financial assistance 5. Speaker's Bureau/Education Services 6. Emergency Assistance Fund 7. Advocacy 8. Liaising with homecare services/Vancouver Meals Society 9. Other (please describe):  107  A p p e n d i x H : Summary o f The from by  Pretest  survey questionnaire  the  three  liaison  representatives  was p r e t e s t e d  organizations  from  and by the  The q u e s t i o n women  who a r e  decided order  this  survey  experiences  If  study,  cost  by  the  the  An  of  the  was  the  of  the  to  study,  Vancouver,  the  o n e woman w h o i s H I V  were  had  calls  It  to was  remain  somewhat  i n the a  part  could  not  be  the  in  similar  become  therefore  Lower of  would  services  to  limited  Mainland.  limitation  and  i n the  s h o u l d be  Lower  similar  category  Lower of  the  covered  study  was  Mainland. vocational  recommended a n d was  question  i n the  training  i n c l u d e d i n the  "background"  found the  word "household",  A question  from  the  calls  w o m a n ' s home w a s w o r d e d a s  included,  i n the  or  final  questionnaire.  some p r e t e s t e r s  using  least  perhaps  researcher,  educational  involved  study  long-distance  t o women l i v i n g  The f i f t h as  of  in  who  telephone  apprenticeship draft  the  geographical women  student  limited  whether  and had access  Mainland.  representatives  professor.  HIV p o s i t i v e  that  to  by at  research  arose  by  V a n c o u v e r PWA, A I D S  Vancouver H e a l t h Department, positive,  Results  asking  because question  i f  this  s e c t i o n was  wording ambiguous. the  number  of  "supported by the  the  woman w a s  a s k i n g about i n was  111  sources  of  thought  to  Rather  than  living  in  income  presently  i n f o r m a t i o n was n o t  h o u s i n g a woman l i v e d  people  reworded  above".  working  necessarily income. be  a  The  important,  was  clear type and  a question addressing Under  the  a  drug  question  user  be  suggested asking  added,  substantially  to  of  pretester  informed  being  although with included.  day  a  but  woman's  this  of  problematic.  experience  opportunistic  the In  to  women w h o h a d a n d h a d n o t q u e s t i o n was r e t a i n e d . target with any  and  The added  illnesses  allow  for  quite  the  day  was  that i f  women w h o a r e  different  and  a  person  this  one  could,  information  was  also  was  eliminated  unnecessary.  a  diagnosis  that  the  of  able  revised,  to  AIDS  definition  infections  that  question  of  of  eliminated after  was  of  AIDS  and noted they  differentiate  that  did  not  in  its  included  A n a d d i t i o n a l s e c t i o n was  associated  experiences  The  add  between  been g i v e n a d i a g n o s i s of AIDS,  a comparison of  "sick"  that  be  women w h o r e s p o n d e d  AIDS.  woman.  d i a g n o s e d w i t h AIDS b e c a u s e  order  injection  the  CDC h a d r e c e n t l y b e e n not  an  about  diagnosis  said  is  suggested  to  traced  women w e r e o f t e n  definition.  partner  for  considered  addressing  Pretesters  by the  One p r e t e s t e r  researchers  AIDS  category  not  HIV p o s i t i v e  be  a  was  d e t a i l was c o n s i d e r e d  question  adopted  i f  the  question,  and added.  difficulty,  The  this  The  added.  information  diagnosis  because  was  e t h n i c / c u l t u r a l group  J e w i s h women w a s that  this  asks  with  had not whether  between  HIV p o s i t i v e . two groups  study  112  should  included  been  to  diagnosed  a woman h a s  HIV i n f e c t i o n .  results  these  the  they  the  had  This  would  potentially  "well"  One p r e t e s t e r  noted  o f women w e r e  often  be  able  to  examine  these. It  was  service for  suggested  that  questions  women t o  for  each  requiring a  record  the  actual  complicate  questionnaire,  The q u e s t i o n s  about  homemaking  following  the  asking  satisfaction subjective  with  and  the  The  after  a  few  misplaced  about  the  in  question.  It  pretester you  to  need?,  read:  which  was c h a n g e d t o The  lists  was  was  lists.  included  to  ask  in  services  the  of  suggested  questions  the to  the  it  best  the  gain  the  to most  beginning  questionnaire  seemed  abrupt  that  and  adequacy  way t o  phrase  recommendation  enough money t o  greater  was  services  the  suggested  on  Do y o u h a v e provides  of  were  dental  support.  that  not  changed,  of  one  buy the  clarification.  The  or  this  food scale  scale.  p r o v i d e d b y AIDS o r g a n i z a t i o n s  enhanced by r e p r e s e n t a t i v e s complete  medicine  medicine,  section of  noted  a five-point  of  of  was moved f r o m t h e  Pretesters  diet  of  order  social  support  pretesters  with  allowed  resulting  services  adequacy  services,  social  originally.  satisfaction  type  be  and  such information would  wording  opinion p o s s i b l e of  end of the  or  types  shopping  The s t a n d a r d i z e d q u e s t i o n n a i r e to  space  possibly  traditional  pretest.  from  dental  questions.  services,  changed  that  was d e c i d e d t h a t  skipping  medical,  service  It  respondents  the  rating  they were u s i n g . the  of  from the  One p r e t e s t e r w h y women m i g h t  113  services  suggested not  to  that  access  provide questions  these  were more be  services,  but  it  was  decided  that  this  was  study.  114  beyond  the  scope  of  the  Appendix I :  The  (Zimet,  chosen  Norbeck  and  Carrieri,  because  Social  of  short  measures  its  focus  length, of  involvement  the  of  The  12  Norbeck,  its  This  Social  and the the  seven-point  Likert  1983)  and  Lindsey 1981),  simplicity, The  required  actual  support  its  soundness.  examined  measure  Carrieri,  support,  as  Support  (Norbeck,  L i n d s e y and  and  Marshall,  the  Scale  (SOS)  Shortened  and Gebhardt,  Social 1986)  c o n t a i n e d measures of p e r c e p t i o n s were  chosen  listing  network.  other  lengthy of  names  The  MSPSS  scale  i n response  (Power,  Champion,  to  questions.  1988)  (Funch,  Support  was  study. the  psychometric  in  1988)  present as  Social  Basham a n d S a r a s o n ,  support  S i g n i f i c a n t Others  Aris,  Perceived  on p e r c e i v e d  persons  Scales  Questionnaire  subjects,  a l t e r n a t i v e l y uses a each of  the  Levine,  social of  initials  and  of  such  Support  1983;  Support  Zimet and F a r l e y ,  others,  (Sarason,  the  its  Social  measure f o r  over  Questionnaire  or  Dahlem,  standardized  was  other  Multidimensional Scale  (MSPSS) the  Review of  s t i l l  psychometric  largely  in  soundness  has  the  (SSS)  scale  were a l s o  examined,  support.  However,  they  stages,  and  developmental  not been  115  of  Support  and  adequately  and  established.  Appendix J :  Permission  for  Use of  116  MSPSS  A p p e n d i x K : Comments a t  End of  Questionnaire  01 - h o m e m a k i n g s e r v i c e s h o u l d b e b e t t e r . B e f o r e homemaking s e r v i c e implemented, no one w a n t e d t o come. ' Not s e t up properly. Three months of fighting with them. S t i l l problems: no u n d e r s t a n d i n g o f H I V . Need AIDS e d u c t i o n . 02 - W o u l d l i k e t o h a v e h o m e m a k i n g s e r v i c e s a v a i l a b l e w h e n not f e e l i n g w e l l . Same f o r c h i l d c a r e . R e : s e r v i c e s (PWN, PWA, A I D S V a n c o u v e r ) : f e e l i n t i m i d a t e d t o ask f o r s e r v i c e s . Even though i n a h i g h e r income b r a c k e t , d o e s n ' t mean t h a t s p o u s e i s w i l l i n g t o h e l p p a y f o r m e d ' s . Re: spouse. F e e l no f i n a n c i a l s u p p o r t f o r e x t r a s I need t o keep me h e a l t h y . On f o o d supplement - have to ask g r a n d p a r e n t s f o r money f o r t h e s e . When n o t w e l l , spouse m a k e s me f e e l g u i l t y f o r n o t t a k i n g c a r e o f c h i l d r e n . R e : H I V d i a g n o s i s : D o c t o r t e s t e d me w i t h o u t me k n o w i n g I w a s being tested. T h i s should not happen. 03 - W o u l d l i k e s o m e t h i n g p e o p l e came f o r w a r d , c o u l d have t o p l a n whole day and after a family.  to happen i n S u r r e y . If more s e t up a g r o u p . Then w o u l d n ' t travel. D i f f i c u l t when l o o k i n g  06 - PWA h a s n o t m a k e me f e e l w e l c o m e o r a b l e t o b e i n v o l v e d a n d i n f a c t PARC i n g e n e r a l i s v i e w e d b y m y s e l f a n d other straight women, men a n d certain gay friends to be an e x c l u s i v e h o s t i l e e n v i r o n m e n t w h e r e I am n o t c o m f o r t a b l e o r wanted. 08  -  (participant  indicated her  name)  11 - w o u l d b e u s e f u l i f s o c i a l s e r v i c e s w o u l d p r o v i d e a d r i v e r f o r 4 days p e r month on days when I know I have t o do e r r a n d s , e g . p i c k i n g up AZT I t a l k about problems w i t h nurses, d o c t o r , and s o c i a l workers e v e n t h o u g h I d o n ' t h a v e much c o n t a c t w i t h f a m i l y o r f r i e n d s N e e d m o r e s p e c i a l i s t s ( p h y s i c i a n s ) f o r c h i l d r e n who a r e H I V positive. 1 2 - 1 am a n A I D S E d u c a t o r a n d d o s p e a k i n g e n g a g e m e n t s f o r PWA. I do phone c o u n s e l l i n g when a s k e d t o c o n t a c t someone i n my a g e g r o u p . I'm a l s o i n v o l v e d i n a HIV-T Support Group w i t h t h e Hemo S o c i e t y ( C H S ) . I ' v e g o n e p u b l i c f o r PWA a n d A I D S V a n c o u v e r . I f e e l we a l l h a v e t o w o r k t o g e t h e r t o get the stigma off t h i s disease. I t d o e s n o t m a t t e r h o w we g o t i t o r w h e r e i t came f r o m . The p a s t cannot be changed, but I ' m n o t t h r o w i n g away t o - d a y ! 118  13 - PWN b u i l d i n g i s n o t i n a g o o d l o c a t i o n . I'm intimidated b y s h a r e d s p a c e w i t h PWA. A l l d o c t o r s s h o u l d be more aware o f H I V i n f e c t i o n ; 9 out o f 10 d o c t o r s d o n ' t h a v e p a m p h l e t s i n t h e i r o f f i c e s o n A I D S / H I V . N e e d m o r e o p e n n e s s among d o c t o r s t o p r o v i d e i n f o . I b e l i e v e t h a t m a n y m o r e women a r e a f f e c t e d b y H I V t h a n we a r e aware o f . 15 - I t ' s not always services. I deal with are supportive.  necessary for people to i t w i t h my f r i e n d s ; t h o s e  use that  AIDS' know  17 - P e o p l e h a v e t o k n o w w e ' r e o u t t h e r e ; r i g h t n e x t d o o r . T h e n we w o u l d n ' t h a v e t o k e e p i t a s e c r e t . I t ' s not just gays and drug u s e r s ; not j u s t t h o s e .  119  A p p e n d i x L : P o s i t i v e Women's N e t w o r k P a m p h l e t  Excerpts  WHY A N H I V P O S I T I V E WOMAN I S NOT H E R E Thank y o u a g a i n (HIVP)  to  unable  for your  participate  to  attend  p o s i t i v e women, s h a r e some o f  invitation for  i n your event.  or  w i t h HIV or  of  each  issues,  accommodate.  doing less of  of  which  few  typical  take this  community work i n the half  a  the  are  enmeshed  takes  time  issues  resources  e x p l a i n why t h e r e  than  to  AIDS a r e  Dealing with  women w i t h  issues  are  issues  are for  opportunity  to  these with you.  Women l i v i n g  leave  woman  T h e v e r y r e a s o n s we  participate  and we.would l i k e  an HIV p o s i t i v e  for  fewer  to  complex  web  and  energy  to  below  can  described  community than  a  Lower Mainland,  dozen w i l l i n g  in a  work.  dozen  These  HIV+  women  a n d why t h e r e  do p u b l i c  speaking  in  are a l l  B r i t i s h Columbia.  -Women f e a r -Rural  loss.  women f e a r  d i s c r i m i n a t i o n and  ostracism  based  on HIV  status. -We d o n ' t  want  t o be  stigmatized.  -Women w i t h c h i l d r e n h a v e m a n y m o r e d e m a n d s o n t h e i r -Women a r e -Living  often  with  a  energy.  caretakers. complicated  medical  regimen  takes  time  and  energy. -Lack  of  positive  community and the  illness  women.  120  itself  take  a toll  on HIV  

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