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Perpetual innovation: child care decisions of parents using pediatric in-home nursing respite care Flato, Linda Margaret 1995

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PERPETUAL INNOVATION: CHILD CARE DECISIONS OF PARENTS USING PEDIATRIC IN-HOME NURSING RESPITE CARE by LINDA MARGARET FLATO  B.Sc.N. Vermont C o l l e g e o f N o r w i c h U n i v e r s i t y , 1991  A THESIS SUBMITTED IN PARTIAL FULFILLMENT OF THE  REQUIREMENTS FOR THE DEGREE OF MASTER OF SCIENCE IN NURSING in  THE  FACULTY OF GRADUATE STUDIES School o f Nursing  We a c c e p t t h i s t h e s i s as  conforming  to the required standard  TH^Jl|NIVERSIrfY OF BRITISH COLUMBIA October, © L i n d a Margaret  1995 F l a t o , 1995  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.  •De^arTrTTent of  A^urS/rt^  The University of British Columbia Vancouver, Canada Date  DE-6 (2/88)  Abstract P e d i a t r i c home c a r e f o r c h i l d r e n w i t h m e d i c a l l y complex c o n d i t i o n s i s a growing  phenomenon made p o s s i b l e b y  parents w i l l i n g and a b l e t o c a r e f o r these c h i l d r e n a t home.  W h i l e p e d i a t r i c home c a r e may d e c r e a s e c o s t s t o t h e  h e a l t h c a r e system,  and p r o v i d e s o c i a l and developmental  b e n e f i t s t o t h e s e c h i l d r e n , t h e i r p a r e n t s o f t e n have l i m i t e d c h i l d c a r e o p t i o n s which would e n a b l e them t o r e j u v e n a t e from p a r e n t i n g a c t i v i t i e s and f u l f i l l  other  r o l e s and r e s p o n s i b i l i t i e s . To i l l u m i n a t e t h i s c h i l d c a r e d i l e m m a , t h i s  study  e x a m i n e s how p a r e n t s o f c h i l d r e n w i t h m e d i c a l l y c o m p l e x c o n d i t i o n s choose t o u t i l i z e  in-home p e d i a t r i c n u r s i n g  r e s p i t e c a r e as a source o f c h i l d c a r e .  This  investigation  c o n s t i t u t e s one p a r t o f a l a r g e r m u l t i - v a r i a b l e ,  pre-post  d e s c r i p t i v e design study e v a l u a t i n g t h e Nursing Respite Program i n B r i t i s h Columbia,  Canada.  To e x p l o r e t h e p r o c e s s b y w h i c h p a r e n t s u s e n u r s i n g r e s p i t e as c h i l d c a r e , q u a l i t a t i v e d a t a from f i r s t r e s p i t e s e r v i c e ) and second  (six-months  (pre-  a f t e r beginning  s e r v i c e ) v i s i t s w i t h t h e p a r e n t s from s i x f a m i l i e s were a n a l y z e d u s i n g grounded t h e o r y .  I n t e r v i e w s and  accompanying f i e l d notes were a u d i o t a p e d and t r a n s c r i b e d f o r a n a l y s i s u s i n g t h e constant comparative Study  method.  findings i n d i c a t e that parents o f c h i l d r e n w i t h  m e d i c a l l y complex c o n d i t i o n s choose t o u t i l i z e n u r s i n g  r e s p i t e as c h i l d c a r e t h r o u g h a p r o c e s s o f p e r p e t u a l innovation.  Throughout t h i s p r o c e s s , dynamic s i t u a t i o n a l  factors require  parents t o c o n t i n u a l l y modify t h e i r use of  n u r s i n g r e s p i t e c a r e i n r e l a t i o n t o o t h e r forms o f c h i l d care.  I n a c y c l i c a l manner, p a r e n t s r e p e a t e d l y a d o p t  s t r a t e g i e s aimed a t c r e a t i n g c h i l d c a r e s i t u a t i o n s t h a t a r e m u t u a l l y b e n e f i c i a l t o b o t h p a r e n t and c h i l d . these strategies  Together,  suggest a d e c i s i o n - m a k i n g framework  embedded w i t h i n t h e p r o c e s s o f p e r p e t u a l  innovation.  While l i t e r a t u r e r e l a t e d t o these study findings i s sparse, the findings are discussed within the context of r e s e a r c h on c h i l d c a r e , r e s p i t e c a r e , and p a r e n t i n g children with chronic  conditions.  c u e s w h i c h may b e u s e d t o i n t e g r a t e larger evaluation implications  In addition,  conceptual  study findings  study are i d e n t i f i e d .  into the  Finally, policy  of study findings are discussed i n r e l a t i o n t o  pediatric respite cafe  delivery.  iv  Table of  Contents  Abstract  i i  Table of Contents  iv  Acknowledgements  viii  Dedication  ix  Chapter  1  1  Problem Background  1  C h i l d Care  2  Respite Clare  3  Nursing Respite Care  4  B r i t i s h Columbia Nursing Respite Program  6  Research Question  9  Purpose  9  Forestructure  10  Assumptions  12  Studying F a m i l i e s who Chronic Conditions  have C h i l d r e n with ,  13  C a t e g o r i c a l versus Noncategorical  i  Approaches U n i t of A n a l y s i s  15 15  Summary  16  Chapter 2  17  Methods  17  Design Grounded Theory  17 *  18  V  T h e o r e t i c a l Underpinnings o f Grounded Theory  19  Sampling, S e t t i n g , and Data C o l l e c t i o n  20  Data A n a l y s i s  23  ....  S i x Family V i g n e t t e s  25  The Adams  ,  26  The Bent l e y s  26  The Carvers.  28  The Darwins  28  The Emerys  29  The Fowlers  31  Summary  32  Chapter 3  .'.  Perpetual  34  Innovation  C h i l d Care f o r C h i l d r e n with M e d i c a l l y Complex Conditions  34  s i t u a t i o n a l Factors  35  Child-related factors  35  Parent-related factors  36  RN-related  37  factors  Factors r e l a t e d t o Nursing Program operations  Respite • • • 38  Perpetual Innovation i n Context  40  Perpetual Innovation S t r a t e g i e s A Decision-Making  Framework  42  vi  P r i o r i t i z i n g parental a c t i v i t i e s 43  requiring c h i l d care E s t i m a t i n g t h e adequacy o f n u r s i n g r e s p i t e h o u r s t o meet p a r e n t s '  46  p e r c e i v e d c h i l d c a r e needs Weighing t h e advantages o f n u r s i n g r e s p i t e c a r e w i t h o t h e r forms o f c h i l d  48  care Matching  c h i l d , p a r e n t , n u r s e , and  other s i t u a t i o n a l factors t o optimize 50  c h i l d care s i t u a t i o n Consequences o f P e r p e t u a l I n n o v a t i o n  52 57  Summary Chapter 4  59 ..  Discussion  59  C h i l d Care  61  Parenting C h i l d r e n with Chronic Conditions  63  Comprehensive R e s p i t e Care D e l i v e r y  65 68  Summary Chapter 5 Implications  i  • . 69 *  69 ...72  Conclusion  74  References Appendix A Letter t o Families  i  78  vii  Appendix  B  Consent / Assent t o P a r t i c i p a t e i n Research  Project...80  viii  Acknowledgements I w o u l d l i k e t o t h a n k my a d v i s o r , f o r h e r s u p p o r t and encouragement, o p p o r t u n i t y t o work on t h e evaluation  project.  members P r o f .  Dr. Virginia  Hayes,  and f o r g i v i n g me  Nursing Respite  I would a l s o l i k e t o  the  Program thank committee  C o n n i e Canam and D r . S a l l y T h o r n e who  provided valuable  input throughout  t h e development  of  this  thesis. Thanks a l s o t o members o f evaluation  team,  D r . Hayes,  for thought-provoking grateful  to  study  through t h e i r  Pam M c E l h e r a n ,  discussions.  families  for the  the  to  following  Fellowship,  I am the  world  the  and c l a s s m a t e s a t UBC,  "Thesis  S u p p o r t Group"I  F a c u l t y of Graduate Studies at  financial  I am U.B.C.  support: U n i v e r s i t y Graduate  t h e Mabel J o h n s t o n S c h o l a r s h i p i n N u r s i n g ,  and  R . E . McKechnie Graduate S c h o l a r s h i p . Finally,  a special  l o v e and d e v o t i o n me.  In a d d i t i o n ,  eyes.  members o f t h e  also grateful  Program  and Myra P e r c y ,  f o r i n v i t i n g me t o s e e  Thanks t o my p r o f e s s o r s especially  the Nursing Respite  thanks  t o my h u s b a n d ,  are a constant source  of  Greg,  whose  inspiration  to  Dedication  To G r e g : F o r b e l i e v i n g i n me and e n c o u r a g i n g me t o c h a s e my  dreams.  1  Chapter 1 Problem Background Advances i n technology, pharmacology, and medical care c o n t r i b u t e t o i n c r e a s i n g numbers o f c h i l d r e n with  medically  complex c o n d i t i o n s l i v i n g a t home (Cohen & P i n n i c k , 1989; Hobbs, P e r r i n , & Ireys, 1985).  While these advances enable  s o p h i s t i c a t e d , l i f e - s u s t a i n i n g care t o be d e l i v e r e d t o these c h i l d r e n , someone must i n v e s t time and energy t o provide such c a r e . by  T h i s r e s p o n s i b i l i t y i s u s u a l l y assumed  parents. In North America, the c u r r e n t t r e n d i s t o keep  c h i l d r e n with m e d i c a l l y complex c o n d i t i o n s a t home whenever p o s s i b l e (Cohen & P i n n i c k , 1989).  Research suggests t h a t  the advantages o f p e d i a t r i c home care i n c l u d e s o c i a l and developmental b e n e f i t s t o c h i l d r e n , as w e l l as decreased c o s t s t o t h e h e a l t h care system (Cohen & P i n n i c k ) .  Given  these b e n e f i t s , and the a v a i l a b i l i t y o f s o p h i s t i c a t e d , p o r t a b l e technology, t h e t r e n d toward high-technology home care f o r c h i l d r e n with m e d i c a l l y complex c o n d i t i o n s i s l i k e l y t o increase. When c h i l d r e n with m e d i c a l l y complex c o n d i t i o n s at home, parents  live  assume r e s p o n s i b i l i t i e s which exceed  t r a d i t i o n a l parenting r e s p o n s i b i l i t i e s .  Yet, even when  c h i l d r e n a r e healthy, parenting can be a demanding, exhausting  experience.  For example, i n f a n t feeding  schedules o f t e n i n t e r r u p t p a r e n t a l s l e e p , while  inquisitive  2  t o d d l e r s r e q u i r e constant p a r e n t a l s u p e r v i s i o n . When parents have c h i l d r e n with m e d i c a l l y complex c o n d i t i o n s , the demands on parents m u l t i p l y .  For example, t h e i r  c h i l d r e n may r e q u i r e v i g i l a n t monitoring, symptom management, o r t e c h n o l o g i c a l i n t e r v e n t i o n s such as suctioning or d i a l y s i s . C h i l d Gare According t o Berns (1993), c h i l d care i s "care given t o c h i l d r e n by persons other than parents during the p a r t s of t h e day t h a t parents a r e absent"  (p. 185). I t i s c a r e  that parents delegate t o o t h e r s , r a t h e r than care t h a t parents provide t o c h i l d r e n themselves.  C h i l d c a r e enables  parents t o work o u t s i d e t h e home, t o complete  household  t a s k s , t o attend s c h o o l , t o s u s t a i n i n t e r p e r s o n a l r e l a t i o n s h i p s with f a m i l y and f r i e n d s , o r t o engage i n leisure activities. To g a i n temporary r e l i e f from parenting a c t i v i t i e s , parents o f healthy c h i l d r e n might e n l i s t t h e a s s i s t a n c e o f extended  f a m i l y , h i r e b a b y s i t t e r s , u t i l i z e daycares, o r  e n r o l l children i n lessons.  Such c h i l d care o p t i o n s enable  parents t o rejuvenate from parenting a c t i v i t i e s , and f u l f i l l other r o l e s and r e s p o n s i b i l i t i e s .  In c o n t r a s t ,  parents o f c h i l d r e n with m e d i c a l l y complex c o n d i t i o n s o f t e n have d i f f i c u l t y f i n d i n g c a r e g i v e r s who possess t h e knowledge and s k i l l t o s a f e l y care f o r t h e i r c h i l d r e n (Crowley,  1990; Teague, Fleming, C a s t l e , Kiernan, Lobo,  3  R i g g s , & W o l f e , 1993). G i v e n t h e a d d i t i o n a l  child-related  c a r e demands e x p e r i e n c e d by t h e s e p a r e n t s , t h i s s c a r c i t y o f c h i l d c a r e becomes a p o t e n t i a l l y s e r i o u s  dilemma.  Respite Care Respite care i s a p o t e n t i a l source of c h i l d care f o r p a r e n t s o f c h i l d r e n w i t h m e d i c a l l y complex c o n d i t i o n s l i v i n g a t home,  "the p u r p o s e o f r e s p i t e c a r e i s t o  t e m p o r a r i l y r e l i e v e parents from  caregiving  responsibilities related to their affected specific  o f H e a l t h funds  In B r i t i s h Columbia,  B.C.  their families  Responsible  through  among  S i n c e t h e 1970's, a v a r i e t y  r e s p i t e models have emerged, e a c h w i t h i t s own and weaknesses (Ahmann, 1986; O'Connor, V a n d e r P l a a t s ,  Ministry  f o r S e n i o r s , 1992).  N u r s i n g R e s p i t e Program i s u n i q u e  r e s p i t e c a r e models.  1985;  respite  N u r s i n g R e s p i t e Program ( B r i t i s h C o l u m b i a  o f H e a l t h and M i n i s t r y The  the  in-home p e d i a t r i c n u r s i n g  c a r e f o r some o f t h e s e c h i l d r e n and t h e B.C.  A  form o f r e s p i t e , n u r s i n g r e s p i t e c a r e , i s p r o v i d e d  t o t h e s e c h i l d r e n by n u r s e s . Ministry  children.  Cohen, 1982;  of  strengths  Cohen & Warren,  & B e t z , 1992;  Upshur,  1982).  T h e s e models v a r y on a t t r i b u t e s s u c h a s c r e d e n t i a l s  and  t r a i n i n g of respite care providers,  care  delivery,  s i t e of respite  age o f i n d i v i d u a l s r e c e i v i n g c a r e , and  or developmental respite care.  needs o f i n d i v i d u a l s e l i g i b l e t o  physical receive  4  C u r r e n t l i t e r a t u r e i d e n t i f i e s t h e need f o r i m p r o v e d q u a l i t y and s k i l l  of respite caregivers  individuals with medically  providing  and b e h a v i o r a l l y  care t o  complex  conditions  (Cohen, 1982; U p s h u r , 1982). I n a d d i t i o n , t h e  literature  indicates that  needs a r e o f t e n  i n d i v i d u a l s w i t h complex  i n e l i g i b l e t o receive respite care  care services  ( H a l p e r n , 1985; O'Connor, P l a a t s , & B e t z , 1992; & U p s h u r , 1982).  As Cohen  indicates, caregiver  s k i l l s matter l e s s  when t h e p u r p o s e o f r e s p i t e i s t o p r o v i d e c o m p a n i o n s h i p t o the  r e c i p i e n t s of care;  however, s p e c i f i c  s k i l l s are  e s s e n t i a l when r e c i p i e n t s o f r e s p i t e c a r e p o s s e s s h e a l t h o r behavioral  conditions  respite caregiver.  w h i c h may r e q u i r e  i n t e r v e n t i o n by t h e  Such f i n d i n g s s u g g e s t t h a t p a r e n t s who  have c h i l d r e n r e q u i r i n g l i f e - s u s t a i n i n g c a r e , s u c t i o n i n g , may have d i f f i c u l t y or capable of providing  such as  finding individuals willing  t h e i r c h i l d r e n w i t h t h e complex,  demanding c a r e t h e y n e e d . Nursing Respite  Care  N u r s e s p o s s e s s b o t h t h e knowledge a n d s k i l l parents c a r i n g f o r c h i l d r e n with medically conditions care.  a t home, by p r o v i d i n g  i n the health  Hildebrandt  r e s p i t e programs  care l i t e r a t u r e , describe  programs f r o m t h e p e r s p e c t i v e p r o g r a m outcomes.  complex  comprehensive r e s p i t e  However, few p e d i a t r i c n u r s i n g  discussed  to relieve  o f r e c i p i e n t s o r emphasize  F o r example, i n a d i s c u s s i o n  (1983) d e s c r i b e s  these  article,  a n in-home r e s p i t e p r o g r a m  5  s e r v i n g t h e e l d e r l y and  o t h e r s who  o r p h y s i c a l or developmental  have c h r o n i c c o n d i t i o n s  d i s a b i l i t i e s , b u t does  i n d i c a t e i f t h e program s e r v e s c h i l d r e n . while a nurse  Furthermore,  p r a c t i t i o n e r c o o r d i n a t e s t h e program,  c a r e i s p r o v i d e d by a t r a i n e d c a r e g i v e r , and In another  article,  not  respite  not a  nurse.  H u r t , B r o d s k y , G e a l t , and  Hopper  (1988) d e s c r i b e a r e g i s t e r e d n u r s e  babysitting service for  f a m i l i e s o f i n f a n t s r e c e n t l y d i s c h a r g e d f r o m an i n t e n s i v e care nursery.  Using a n o n v a l i d a t e d q u e s t i o n n a i r e which  a d m i n i s t e r e d t o e l i g i b l e u s e r s and s e r v i c e , the authors determined comfortable another out  leaving their  i n d i v i d u a l , and  this  that a l l users  felt  i n f a n t w i t h a nurse than  with  While t h i s e x p l o r a t o r y  t h a t p a r e n t s o f i n f a n t s who  complex c o n d i t i o n s may  more  71% o f u s e r s w o u l d n o t have gone  i n the absence o f a nurse.  study suggests  nonusers of  was  utilize  have m e d i c a l l y  in-home p e d i a t r i c  r e s p i t e c a r e , i t does n o t examine how  nursing  parents u t i l i z e  this  service i n r e l a t i o n to other c h i l d care options. F i n a l l y , Sherman (1995) examines t h e  influence of i n -  home p e d i a t r i c r e s p i t e c a r e p r o v i d e d by n u r s e s p e r i o d o f s i x months on  over  family stress reduction  improved q u a l i t y o f l i f e .  W h i l e Sherman u s e s a  g r o u p , p r e - p o s t t e s t d e s i g n t o examine t h e r e s p i t e on t h e s e v a r i a b l e s , 64%  o f 73  and single  influence of  informants  complete p o s t t e s t measures.  Consequently,  be  F i n d i n g s f r o m two  interpreted with caution.  a  d i d not  results  should  surveys  and  6  one  parent s a t i s f a c t i o n questionnaire  indicate that respite  u t i l i z a t i o n relates inversely to psychological among c h i l d r e n ' s p r i m a r y c a r e g i v e r s ; may  contribute to  decrease i n c h i l d h o s p i t a l i z a t i o n s ; provides o p p o r t u n i t i e s t o run errands, and  symptoms  parents  attend to personal  with  business,  pursue r e l a t i o n s h i p s w i t h spouses, other c h i l d r e n  f r i e n d s ; and  may  provide  a  and  socialization opportunities to  the  child. By a t t e m p t i n g  t o q u a n t i f y r e s p i t e outcomes r e l a t e d t o  f a m i l y s t r e s s r e d u c t i o n and  improved q u a l i t y of  life,  Sherman's s t u d y c o n t r i b u t e s t o t h e s p a r s e body o f regarding  in-home n u r s i n g r e s p i t e c a r e  m e d i c a l l y complex c o n d i t i o n s .  for children with  However, he d o e s n o t  t h e p r o c e s s by w h i c h p a r e n t s c h o o s e t o u t i l i z e r e s p i t e care child.  knowledge  i n r e l a t i o n to other  examine  nursing  sources of care  for their  G i v e n t h e demands on p a r e n t s o f c h i l d r e n w i t h  m e d i c a l l y complex c o n d i t i o n s , c o u p l e d w i t h the p a u c i t y  of  c h i l d c a r e o p t i o n s , t h i s phenomenon w a r r a n t s e x p l o r a t i o n . The  present study seeks t o i n v e s t i g a t e the problem from  the  p e r s p e c t i v e o f p a r e n t s whose c h i l d r e n r e c e i v e in-home nursing r e s p i t e care through the B r i t i s h Columbia M i n i s t r y of Health's Nursing  Respite  B r i t i s h Columbia Nursing The  B.C.  Nursing  Program.  Respite  Program  R e s p i t e Program p r o v i d e s  n u r s i n g r e s p i t e t o f a m i l i e s o f c h i l d r e n age who  in-home  19 and  have m e d i c a l l y c o m p l e x c o n d i t i o n s , o r who  are  under  7  technology  dependent.  The p u r p o s e o f t h e p r o g r a m i s t o  t e m p o r a r i l y r e l i e v e p a r e n t s f r o m t h e d a y t o d a y demands o f c a r i n g f o r c h i l d r e n w i t h complex n e e d s .  I t aims t o  decrease p a r e n t a l f a t i g u e , prevent h o s p i t a l of  re-admissions  c h i l d r e n due t o p a r e n t a l f a t i g u e , e n a b l e p a r e n t s t o  a t t e n d t o o t h e r r e l a t i o n s h i p s w i t h i n t h e home and community, a s w e l l a s p u r s u e a c t i v i t i e s o t h e r t h a n c h i l d care  direct  ( B r i t i s h Columbia M i n i s t r y o f H e a l t h and  M i n i s t r y R e s p o n s i b l e f o r S e n i o r s , 1992). Once a p p l i c a t i o n t o t h e N u r s i n g R e s p i t e P r o g r a m i s accepted,  t h e c h i l d a n d f a m i l y meet w i t h one o f s e v e n  r e g i o n a l n u r s i n g c o n s u l t a n t s l o c a t e d throughout t h e province.  The c o n s u l t a n t v i s i t s t h e c h i l d  and f a m i l y a t  home o r i n h o s p i t a l , a n d a s s e s s e s t h e c h i l d r e s p i t e n e e d s . She s u b s e q u e n t l y  presents t h i s  a s c r e e n i n g committee, w h i c h d e t e r m i n e s eligibility eligible,  and f a m i l y ' s assessment t o  the child's  f o r t h e N u r s i n g R e s p i t e Program.  To be  t h e c h i l d must r e q u i r e , i n t h e a b s e n c e o f a  parent, a r e g i s t e r e d nurse o r l i c e n s e d p r a c t i c a l caregiver  nurse as  ( B r i t i s h Columbia M i n i s t r y o f H e a l t h and M i n i s t r y  Responsible  f o r S e n i o r s , 1992).  B a s e d on d a t a c o l l e c t e d by t h e n u r s i n g c o n s u l t a n t , t h e N u r s i n g R e s p i t e Program a s s i g n s e l i g i b l e c h i l d r e n t o o n e o f five classification frequency,  groups.  These groups determine t h e  d u r a t i o n , and t y p e o f r e s p i t e c a r e t h a t a c h i l d  may r e c e i v e .  D e p e n d i n g on t h e c h i l d ' s c o n d i t i o n o v e r  time,  8  the p r o v i s i o n of nursing r e s p i t e care might increase  or  decrease.  C h i l d r e n whose c o n d i t i o n s i m p r o v e a r e e v e n t u a l l y  discharged  from t h e program.  When p r o v i d e d s e r v i c e s a r e  p a l l i a t i v e , c h i l d r e n m i g h t r e m a i n on t h e p r o g r a m u n t i l d i e . The  they  nursing c o n s u l t a n t conducts ongoing assessments t o  determine the l e v e l of nursing r e s p i t e care required f o r e a c h c h i l d and  family.  A f t e r determining  the c h i l d ' s required l e v e l of  care,  the nursing consultant r e f e r s the c h i l d t o a p r i v a t e n u r s i n g agency.  In c o l l a b o r a t i o n with the  agency  s u p e r v i s o r , f a m i l i e s s e l e c t and o r i e n t a g e n c y n u r s e s t o p r o v i d e in-home r e s p i t e c a r e t o t h e i r c h i l d .  In a d d i t i o n ,  the c o n s u l t a n t works w i t h agency s t a f f t o develop a c a r e p l a n , w h i c h i s a p p r o v e d by  parents.  To s u m m a r i z e , t h e BC N u r s i n g p a r e n t s who  nursing  R e s p i t e Program  provides  have c h i l d r e n w i t h m e d i c a l l y complex c o n d i t i o n s  w i t h a source of c h i l d care. about the process  However, l i t t l e i s known  by w h i c h p a r e n t s  use  in-home p e d i a t r i c  n u r s i n g r e s p i t e c a r e t o meet t h e i r o v e r a l l c h i l d  care  needs.  To  i l l u m i n a t e t h i s i s s u e , I am e x p l o r i n g t h e  process  t h r o u g h w h i c h p a r e n t s make d e c i s i o n s t o i n t e g r a t e  nursing r e s p i t e care w i t h t h e i r other sources  of  child  care. This a n a l y s i s i s being conducted w i t h i n the o f a l a r g e r s t u d y by D r . V. Hayes and P.  context  McElheran  ( O t t e r m a n ) , e v a l u a t i n g t h e BC N u r s i n g R e s p i t e  Program.  9  Research  Question  The a n a l y s i s d e s c r i b e d i n t h i s r e p o r t i s d i r e c t e d b y t h e f o l l o w i n g q u e s t i o n : How do p a r e n t s who h a v e c h i l d r e n w i t h m e d i c a l l y complex c o n d i t i o n s choose t o u t i l i z e n u r s i n g r e s p i t e c a r e as a form o f c h i l d c a r e ?  This  specific  q u e s t i o n r e l a t e s t o an o b j e c t i v e posed i n t h e l a r g e r e v a l u a t i o n s t u d y : To g e n e r a t e m i d - r a n g e t h e o r y a b o u t t h e impact o f a l l - n u r s e r e s p i t e c a r e f o r f a m i l i e s o f c h i l d r e n w i t h m e d i c a l l y f r a g i l e o r complex h e a l t h c o n d i t i o n s . Purpose The p u r p o s e o f t h e f o l l o w i n g a n a l y s i s i s t o b e g i n g e n e r a t i n g s u b s t a n t i v e t h e o r y a b o u t t h e manner i n w h i c h p a r e n t s o f c h i l d r e n w i t h m e d i c a l l y complex c o n d i t i o n s c h o o s e t o u t i l i z e ih-home n u r s i n g r e s p i t e c a r e t o augment other sources of c h i l d care.  To d i s c o v e r s o c i a l  processes  i n v o l v e d i n p a r e n t s ' u t i l i z a t i o n o f r e s p i t e as c h i l d c a r e , d a t a were c o l l e c t e d and a n a l y z e d u s i n g grounded t h e o r y . To r e - e m p h a s i z e ,  t h i s analysis i s part of a larger  e v a l u a t i o n study being conducted McElheran  (Otterman).  by D r . V. Hayes and P.  Commencing i n A p r i l 1994 a n d  p r o c e e d i n g u n t i l May 1996, t h e e v a l u a t i o n s t u d y u s e s a m u l t i - v a r i a b l e , one-group, p r e - p o s t - p o s t , e x p l o r a t o r y , d e s c r i p t i v e d e s i g n t o e v a l u a t e t h e B.C. N u r s i n g R e s p i t e Program.  Both q u a l i t a t i v e and q u a n t i t a t i v e d a t a a r e b e i n g  c o l l e c t e d from parents a t t h r e e time p o i n t s : p r i o r t o t h e  10  commencement o f n u r s i n g c a r e t h r o u g h t h e N u r s i n g R e s p i t e P r o g r a m , a s w e l l a s s i x a n d t w e l v e months a f t e r data  initial  collection. W i t h i n t h e d e s i g n o f t h i s s t u d y , I am e x p l o r i n g how  p a r e n t s u t i l i z e n u r s i n g r e s p i t e a s c h i l d c a r e by a n a l y z i n g the q u a l i t a t i v e data.  Findings presented i n t h i s report  a r e p r e l i m i n a r y and r e f l e c t a n a l y s i s o f a r e p r e s e n t a t i v e p o r t i o n o f d a t a f r o m Hayes a n d M c E l h e r a n ' s  study.  I t i s my  i n t e n t i o n t o expand t h e s e f i n d i n g s by c o n t i n u i n g t o f u r t h e r a n a l y z e d a t a from t h e s t u d y .  The v e r b t e n s e u s e d t o  d i s c u s s these f i n d i n g s r e f l e c t s t h e ongoing  nature of t h i s  study. Forestructure My i n t e r e s t i n t h i s r e s e a r c h p r o b l e m  emerges f r o m  my  c l i n i c a l e x p e r i e n c e c a r i n g f o r a c u t e l y and c h r o n i c a l l y i l l i n f a n t s and c h i l d r e n i n t h e h o s p i t a l s e t t i n g .  This  experience includes preparing parents f o r discharge of c h i l d r e n w i t h complex c a r e needs such as v e n t i l a t i o n , tracheostomy  c a r e , oxygen a d m i n i s t r a t i o n , o r t h e use o f  other technologies.  After discharge of t h e i r children  h o s p i t a l , some p a r e n t s d e s c r i b e d i f f i c u l t y  from  finding  caregivers q u a l i f i e d t o d e l i v e r high-technology care t o their children. relief  Subsequently,  they experience  little  from t h e i r c a r e g i v i n g r e s p o n s i b i l i t i e s , and few  o p p o r t u n i t i e s t o r e s t o r pursue o t h e r a c t i v i t i e s . p a r e n t a c c o u n t s e n c o u r a g e me t o u n d e r s t a n d  Such  the experience  11  of parents  c a r i n g f o r c h i l d r e n w i t h m e d i c a l l y complex  c o n d i t i o n s a t home. To t h i s e n d , I h a v e e x p l o r e d t h r o u g h a c a d e m i c  study  t h e o r e t i c a l and p r a c t i c a l i s s u e s r e l a t e d t o t h e e x p e r i e n c e of p a r e n t i n g c h i l d r e n w i t h m e d i c a l l y complex c o n d i t i o n s a t home.  My e x p o s u r e t o t h e o r e t i c a l p e r s p e c t i v e s o n h e a l t h  p r o m o t i o n a n d community n u r s i n g h a s b e e n p a r t i c u l a r l y i n f l u e n t i a l i n g u i d i n g me t o a c k n o w l e d g e s t r e n g t h s o f i n d i v i d u a l s , f a m i l i e s , and communities, w h i l e r e c o g n i z i n g the p o t e n t i a l f o r health i n s i t u a t i o n s o f apparent or chronicity.  illness  I n a d d i t i o n , my e x p o s u r e t o t h e w o r k o f  f a c u l t y members s t u d y i n g c h i l d r e n w i t h c h r o n i c c o n d i t i o n s and  t h e i r f a m i l i e s h a s s e n s i t i z e d me t o t h e t o p i c u n d e r  study  (Anderson, 1981; Anderson & E l f e r t ,  1993;  Hayes 1992; R o b i n s o n , 1 9 8 5 ) .  1989; Canam,  My a p p r o a c h t o t h i s s t u d y i s f u r t h e r i n f l u e n c e d b y academic c l i n i c a l e x p e r i e n c e s ,  w h i c h e x p o s e d me t o a  v a r i e t y o f r e s p i t e c a r e models designed  t o serve f a m i l i e s  who have c h i l d r e n w i t h d i v e r s e c h r o n i c c o n d i t i o n s .  This  e x p o s u r e i n c l u d e s my p a r t i c i p a t i o n i n t h e d e v e l o p m e n t o f a v o l u n t e e r g r a n d p a r e n t p r o g r a m f o r f a m i l i e s who h a v e c h i l d r e n w i t h " s p e c i a l needs", a program which  potentially  provides parents w i t h a break from p a r e n t i n g responsibilities. In a d d i t i o n t o c l i n i c a l experience courses,  and academic  I w o r k a s a r e s e a r c h a s s i s t a n t f o r D r . Hayes a n d  12  Ms. M c E l h e r a n on t h e i r s t u d y Columbia Nursing  evaluating the B r i t i s h  R e s p i t e Program.  Since the beginning of  t h e p i l o t p h a s e o f t h i s p r o j e c t , I have c o l 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 d a t a w i t h  both  families of children  r e q u i r i n g n u r s i n g r e s p i t e c a r e , and have p a r t i c i p a t e d i n a n a l y z i n g q u a l i t a t i v e d a t a u s i n g grounded t h e o r y . work as a r e s e a r c h a s s i s t a n t d i r e c t l y interest  i n this  preliminary data  research question.  T h u s , my  i n f l u e n c e s my Specifically,  s u g g e s t t o me t h a t t h e number a n d s k i l l s  o f p o t e n t i a l c a r e g i v e r s t o whom p a r e n t s  may d e l e g a t e t h e  c a r e o f t h e i r c h i l d who has a m e d i c a l l y complex c o n d i t i o n v a r i e s among p a r e n t s , c o n s i d e r how p a r e n t s child  a phenomenon w h i c h c a u s e s me t o u t i l i z e n u r s i n g r e s p i t e as a source o f  care. Assumptions When c o n d u c t i n g  r e s e a r c h , t h e i n v e s t i g a t o r ' s approach  i m p l i e s assumptions r e l a t e d t o methodological  i s s u e s and  t h e o r e t i c a l perspectives regarding the population study this  (Knafl & Deatrick, study  1987).  Assumptions  r e l a t e t o three methodological  under  underlying  issues  described  i n l i t e r a t u r e e x a m i n i n g f a m i l i e s , o r f a m i l y members, l i v e w i t h c h i l d r e n who have c h r o n i c c o n d i t i o n s .  who  First,  K n a f l and D e a t r i c k compare and c o n t r a s t two a p p r o a c h e s t o studying  f a m i l i e s o f c h i l d r e n who h a v e c h r o n i c c o n d i t i o n s .  S e c o n d , S t e i n and J e s s o p Perrin  (1989), a s w e l l a s P l e s s and  (1985), d e b a t e t h e e x t e n t t o w h i c h p a r e n t s o f  13  children with  d i v e r s e c h r o n i c c o n d i t i o n s have s i m i l a r o r  d i f f e r e n t l i f e experiences.  L a s t , Thomas (1987) d i s c u s s e s  unit of analysis i n family research, I will  and i t s i m p l i c a t i o n s .  d e s c r i b e t h e s e i s s u e s and t h e i r  underlying  a s s u m p t i o n s , and d i s c u s s t h e i r r e l e v a n c e  t o my  Studying  Chronic  F a m i l i e s who have C h i l d r e n w i t h  According studying  t o Knafl & Deatrick  (1987),  f a m i l i e s of c h i l d r e n with chronic  study. Conditions  researchers conditions  u t i l i z e one o f two a p p r o a c h e s , e a c h f o u n d e d o n d i f f e r e n t assumptions. provide  In d e s c r i b i n g these,  K n a f l and D e a t r i c k  a framework f o r o r g a n i z i n g a n d i n t e r p r e t i n g  e x i s t i n g research  c o n c e p t u a l i z i n g family responses t o a  child's chronic condition.  While they use t h e term  "family" t o describe t h e i r  framework, t h e y i l l u s t r a t e  framework w i t h analysis. parents, the  this  s t u d i e s based on d i f f e r e n t u n i t s o f  F o r example, s t u d y i n f o r m a n t s s i b l i n g s , the c h i l d with  f a m i l y as a whole.  may be m o t h e r s ,  a chronic condition, or  Consequently, t h i s  a p p l i e s t o my s t u d y , i n w h i c h p a r e n t s  framework  are the unit of  analysis. Researchers using the Objective/Passive/Outcome Approach  (OPOA) s e e k t o measure, p r e d i c t , and c o n t r o l t h e  i m p a c t o f p e d i a t r i c c h r o n i c c o n d i t i o n s on f a m i l i e s ( K n a f l & Deatrick,  1987).  Use o f t h i s a p p r o a c h assumes t h a t  f a m i l i e s respond p a s s i v e l y t o t h e c h i l d ' s c h r o n i c c o n d i t i o n ; thus,  s t r a t e g i e s u s e d by f a m i l i e s t o manage t h e  14  c h i l d ' s c o n d i t i o n a r e not addressed.  Conversely,  researchers u s i n g t h e S u b j e c t i v e / A c t i v e / P r o c e s s Approach ( S A P A ) , s e e k t o u n d e r s t a n d how f a m i l i e s o f c h i l d r e n w i t h c h r o n i c c o n d i t i o n s a c t i v e l y manage t h e i r c h i l d ' s c o n d i t i o n within the context of family l i f e  (Knafl & Deatrick).  R e s e a r c h e r s u s i n g t h i s a p p r o a c h assume t h a t l i v i n g w i t h a c h i l d who h a s a c h r o n i c c o n d i t i o n i s n o t n e c e s s a r i l y a negative  situation? rather families define their  own  experiences. Together, t h e s e two approaches p r o v i d e  complementary  views o f f a m i l y responses t o a c h i l d ' s c h r o n i c c o n d i t i o n . W h i l e t h e s t r e n g t h o f OPOA l i e s i n i t s a b i l i t y t o l i n k p o t e n t i a l p r o b l e m s o r n e g a t i v e outcomes w i t h a t r i s k i n d i v i d u a l s a n d g r o u p s , SAPA a c k n o w l e d g e s t h a t f a m i l i e s a n d t h e i r i n d i v i d u a l members a c t i v e l y d e f i n e a n d manage c h r o n i c conditions. In keeping  w i t h SAPA a s s u m p t i o n s , I c o n d u c t e d  this  s t u d y a s s u m i n g t h a t p a r e n t s whose c h i l d r e n r e c e i v e n u r s i n g r e s p i t e care d e s i r e a break from c a r e g i v i n g responsibilities.  Furthermore, these parents  actively  choose t o u t i l i z e n u r s i n g r e s p i t e i n l i e u o f , o r i n a d d i t i o n t o , other sources  of c h i l d care t o obtain  from p a r e n t i n g r e s p o n s i b i l i t i e s .  Underlying  relief  these  a s s u m p t i o n s i s t h e p r e m i s e t h a t p e d i a t r i c in-home n u r s i n g r e s p i t e i s a form o f c h i l d  care.  15  C a t e g o r i c a l v e r s u s N o n c a t e g o r i c a l Approaches While  d i f f e r e n t p e d i a t r i c chronic conditions present  parents with d i v e r s e care issues, parents of c h i l d r e n  with  d i f f e r e n t chronic conditions also face similar care issues (Pless & Perrin, c o l l e c t i n g and  1985;  S t e i n & Jessop,  analyzing data i n t h i s  1989).  In  s t u d y I assume t h a t ,  d e s p i t e d i f f e r e n c e s i n t h e m e d i c a l l y complex C o n d i t i o n s o f c h i l d r e n r e c e i v i n g n u r s i n g r e s p i t e through  t h e B.C.  R e s p i t e Program, s i m i l a r i t y e x i s t s among p a r e n t to u t i l i z e  strategies  n u r s i n g r e s p i t e c a r e as a form o f c h i l d  Consequently,  Nursing  care.  d i v e r s i t y among t h e m e d i c a l l y complex  c o n d i t i o n s o f c h i l d r e n whose p a r e n t s p a r t i c i p a t e i n t h i s study helps e l u c i d a t e u n i v e r s a l aspects of the process  by  which parents o f c h i l d r e n w i t h d i f f e r e n t c o n d i t i o n s u t i l i z e n u r s i n g r e s p i t e as c h i l d  care.  Unit of Analysis Data c o l l e c t e d  from  individual  f a m i l y members, dyads  o r o t h e r f a m i l y s u b g r o u p s , o r t h e f a m i l y as a whole, d i f f e r e n t and family l i f e  not n e c e s s a r i l y congruent  (Thomas, 1 9 8 7 ) .  a n a l y s i s i n the proposed  yield  perspectives of  Since parents are the u n i t  s t u d y j, I am  assuming t h a t  f i n d i n g s w i l l d e s c r i b e t h e p a r e n t p e r s p e c t i v e on  study  the  p r o c e s s by w h i c h n u r s i n g r e s p i t e augments t h e i r c h i l d o p t i o n s , and  of  care  t h a t the c h i l d r e c e i v i n g nursing r e s p i t e ,  s i b l i n g s , o r o t h e r f a m i l y members s u c h a s g r a n d p a r e n t s ,  do  16  not n e c e s s a r i l y share t h e p e r s p e c t i v e expressed by p a r e n t s . Furthermore,  when p a r e n t s a r e i n t e r v i e w e d t o g e t h e r , t h e  p e r s p e c t i v e o f t h e i n d i v i d u a l m o t h e r o r f a t h e r may o r may not be e x p r e s s e d . Summary Home c a r e f o r c h i l d r e n w i t h m e d i c a l l y c o m p l e x c o n d i t i o n s i s a growing  phenomenon made p o s s i b l e b y p a r e n t s  w i l l i n g a n d a b l e t o c a r e f o r c h i l d r e n a t home.  Potential  a d v a n t a g e s o f p e d i a t r i c home c a r e may i n c l u d e d e c r e a s e d c o s t s t o t h e h e a l t h c a r e system, developmental  as w e l l as s o c i a l and  b e n e f i t s t o t h e c h i l d r e n . Yet parents c a r i n g  f o r t h e s e c h i l d r e n o f t e n have l i m i t e d c h i l d c a r e o p t i o n s w h i c h w o u l d e n a b l e them t o r e j u v e n a t e f r o m p a r e n t i n g a c t i v i t i e s and f u l f i l l o t h e r r o l e s and r e s p o n s i b i l i t i e s . P e d i a t r i c in-home n u r s i n g r e s p i t e c a r e r e p r e s e n t s f o r parents a p o t e n t i a l source o f c h i l d care f o r c h i l d r e n w i t h m e d i c a l l y complex c o n d i t i o n s . To s h e d l i g h t o n t h e c h i l d c a r e d i l e m m a f a c e d b y t h e s e parents, t h i s study sets o u t a beginning c o n c e p t u a l i z a t i o n o f how p a r e n t s o f c h i l d r e n w i t h m e d i c a l l y c o m p l e x c o n d i t i o n s c h o o s e t o u t i l i z e in-home p e d i a t r i c n u r s i n g r e s p i t e c a r e as a p o t e n t i a l source o f c h i l d c a r e .  The n e x t  c h a p t e r d e s c r i b e s t h e r e s e a r c h methods u s e d t o e x a m i n e t h i s phenomenon.  17  Chapter  2  Methods Design S i n c e my  study  being conducted  i s p a r t of a l a r g e r e v a l u a t i o n study  by Hayes and  McElheran (Otterman),  its  d e s i g n i s i n f l u e n c e d by t h e d e s i g n o f t h e l a r g e r s t u d y . c o l l e c t b o t h q u a n t i t a t i v e and  q u a l i t a t i v e data, the  investigators are using a pre-post-post descriptive design,  d a t a a r e b e i n g c o l l e c t e d and theory.  intervals.  from  Qualitative  a n a l y z e d u s i n g grounded  Grounded t h e o r y methods a r e c o n g r u e n t  exploring s o c i a l processes  co-  exploratory  i n which data are c o l l e c t e d  f a m i l i e s a t t h r e e , six-month time  To  with  involved i n parents'  o f n u r s i n g r e s p i t e as c h i l d c a r e .  utilization  By u s i n g g r o u n d e d  t o e x p l o r e t h i s phenomenon, I a l s o a v o i d  theory  violating  p h i l o s o p h i c a l assumptions g u i d i n g d a t a c o l l e c t i o n  and  a n a l y s i s i n the e v a l u a t i o n study. A hallmark  o f grounded t h e o r y  is theoretical  which d i r e c t s the r e s e a r c h e r t o seek d a t a r a t h e r than a t s e t time  selectively,  intervals, to illuminate  r e l e v a n t t o the emerging t h e o r y  {Strauss  sampling,  concepts  & Corbin,  1990).  S i n c e t h e q u a n t i t a t i v e s i d e o f Hayes and M c E l h e r a n ' s d e s i g n r e q u i r e s d a t a t o be c o l l e c t e d a t s e t t i m e informants  a r e b e i n g i n t e r v i e w e d on a s c h e d u l e ,  p r i m a r i l y by t h e i r a b i l i t y t p i n f o r m s p e c i f i c concepts  as they a r i s e d u r i n g a n a l y s i s .  While  study  intervals, r a t h e r than  theoretical this  18  sampling it  p l a n weakens p u r e t h e o r e t i c a l s a m p l i n g  p r o v i d e d me  procedures,  w i t h an o p p o r t u n i t y t o c a p t u r e p r o c e s s  c o m p a r i n g p a r e n t a l p e r s p e c t i v e s on c h i l d c a r e b e f o r e s i x months a f t e r p a r e n t s b e g i n n u r s i n g r e s p i t e D u r i n g t h e c o u r s e o f my  theoretical sensitivity,  team members t o t h e c o n c e p t a form of c h i l d c a r e . met,  and  by  As a member o f  t h i s team, I have i n f l u e n c e d s u b s e q u e n t d a t a enhanced my  analyses  with these data  members o f t h e e v a l u a t i o n r e s e a r c h team.  and  services.  study, other r e l a t e d  have s i m u l t a n e o u s l y been c o n d u c t e d  by  collection,  sensitized  other  of pediatric nursing respite  Once t h e s i s r e q u i r e m e n t s  as  have b e e n  I w i l l continue t h i s collaboration, incorporating  future findings  into the preliminary findings presented  t h i s t h e s i s , and w e a v i n g t h i s work i n t o t h e evaluation  in  larger  study.  Grounded T h e o r y Grounded t h e o r y s e e k s  to describe social  processes  t h r o u g h w h i c h p e o p l e d e f i n e and make s e n s e o f t h e i r (Hutchinson,  1986).  Theory generated  world  by t h i s method i s  " i n d u c t i v e l y d e r i v e d f r o m t h e s t u d y o f t h e phenomenon i t represents  ... i t i s d i s c o v e r e d , d e v e l o p e d ,  p r o v i s i o n a l l y v e r i f i e d through and  and  systematic data  collection,  a n a l y s i s o f d a t a p e r t a i n i n g t o t h a t phenomenon"  ( S t r a u s s & C o r b i n , 1990,  p.  23).  Grounded t h e o r y e n t a i l s s i m u l t a n e o u s c o d i n g , and  analysis of data.  Theoretical  collection, sampling  19  procedures  enable the researcher t o develop  concepts,  c a t e g o r i e s , and t h e i r a s s o c i a t e d p r o p e r t i e s and and  t o i d e n t i f y and e x p l a i n r e l a t i o n s h i p s  categories  between  ( S t r a u s s & C o r b i n , 1990). T h e o r e t i c a l  i n combination procedures, processes  dimensions,  w i t h open, a x i a l , and  selective  sampling,  coding  contribute t o the inductive, rigorous, a n a l y t i c  o f grounded t h e o r y from which e m p i r i c a l l y  t h e o r y emerges  (Hutchinson,  T h e o r e t i c a l Underpinnings  1986;  based  Strauss & Corbin).  o f Grounded T h e o r y  When u s i n g g r o u n d e d t h e o r y methods, t h e r e s e a r c h e r r e l a t e s concepts  and c a t e g o r i e s e m e r g i n g f r o m t h e d a t a  a c o n c e p t u a l framework ( H u t c h i n s o n , this  framework g u i d e s  analysis.  1986).  T h i s approach d i f f e r s  from  the study  (Hutchinson).  The  i n grounded t h e o r y m i s l e a d s  and  data  verificational  i n which a s e l e c t e d t h e o r e t i c a l  framework g u i d e s  i d e a o f an e m e r g i n g  framework  some i n t o t h i n k i n g t h a t  grounded t h e o r y i s " a t h e o r e t i c a l " On  i t emerges,  f u r t h e r t h e o r e t i c a l sampling  research,  p. 4 6 ) .  As  into  ( C h e n i t z & Swanson,  the c o n t r a r y , symbolic  1986,  interactionism provides  a f o u n d a t i o n f o r t h e g r o u n d e d t h e o r y method, and i n t e r p r e t a t i o n o f the emerging t h e o r y  enriches  ( C h e n i t z & Swanson;  Hutchinson). The  symbolic  i n t e r a c t i o n i s t underpinnings  theory are congruent  w i t h examining  how  parents  o f grounded perceive  n u r s i n g r e s p i t e as a f o r m o f c h i l d c a r e , and t h e p r o c e s s  by  which parents u t i l i z e n u r s i n g r e s p i t e i n r e l a t i o n t o o t h e r  20  forms o f c h i l d c a r e .  Symbolic  the processes of s o c i a l individuals  i n t e r a c t i o n i s m f o c u s e s on  i n t e r a c t i o n through which  i n t e r p r e t t h e i r world  (Blumer,  1969).  Major  concepts o f symbolic i n t e r a c t i o n i s m i n c l u d e the s e l f , w o r l d , and  social action  (Blumer).  Symbolic  i n t e r a c t i o n i s t s v i e w t h e s e l f as r e f l e c t i v e and evolving.  The  ever-  s o c i a l world i n which the i n d i v i d u a l  and upon w h i c h t h e i n d i v i d u a l r e f l e c t s c o n c r e t e and a b s t r a c t o b j e c t s .  The  the  exists  i s composed o f  i n d i v i d u a l endows t h e s e  o b j e c t s w i t h s y m b o l i c meaning; a c t i o n s t o w a r d r e f l e c t t h e meaning w h i c h t h e y have f o r t h e  these objects  individual  (Blumer). As  individuals  shape and a r e shaped  interact  i n the o b j e c t world, they  by t h i s w o r l d  (Blumer,  1969).  i n d i v i d u a l ' s s u b j e c t i v e r e a l i t y changes w i t h t i m e c o n t e x t , and meaning v a r i e s among i n d i v i d u a l s . symbolic i n t e r a c t i o n i s t approach  both  An and  The  enhances i n t e r p r e t a t i o n o f  p a r e n t p e r s p e c t i v e s on c h o o s i n g t o use n u r s i n g r e s p i t e i n r e l a t i o n t o o t h e r forms o f c h i l d c a r e .  Understanding  p a r e n t p e r s p e c t i v e s w i l l a s s i s t n u r s e s t o p l a n and  deliver  in-home n u r s i n g r e s p i t e s e r v i c e s w h i c h a d a p t t o t h e p e r c e i v e d c h i l d c a r e needs o f p a r e n t s . Sampling,  S e t t i n g , and D a t a  Informants  Collection  c a p a b l e o f i l l u m i n a t i n g my  topic of  are being r e c r u i t e d through sampling procedures f o r Hayes' and M c E l h e r a n ' s  study.  study  developed  O v e r a 15 month p e r i o d .  21  f a m i l i e s admitted t o t h e N u r s i n g R e s p i t e Program a r e b e i n g approached t o p a r t i c i p a t e i n t h e e v a l u a t i o n study. E l i g i b l e i n f o r m a n t s i n c l u d e members o f f a m i l i e s who h a v e n o t r e c e i v e d n u r s i n g c a r e t h r o u g h t h e B.C. N u r s i n g R e s p i t e Program b u t a r e about t o r e c e i v e such c a r e . Once f a m i l i e s a r e d e t e r m i n e d  t o be e l i g i b l e t o r e c e i v e  c a r e through t h e N u r s i n g R e s p i t e Program, t h e y a r e s e n t a l e t t e r e x p l a i n i n g t h e e v a l u a t i o n s t u d y and r e q u e s t i n g t h e i r p a r t i c i p a t i o n (Appendix A ) .  A research assistant  then  phones e l i g i b l e f a m i l i e s t o a n s w e r q u e s t i o n s a b o u t t h e s t u d y and o b t a i n v e r b a l consent.  I f t h e f a m i l y agrees t o  p a r t i c i p a t e i n the study, the research a s s i s t a n t the f i r s t  interview.  schedules  P r i o r t o t h i s interview, informants  r e a d and s i g n a w r i t t e n c o n s e n t  form  (Appendix B ) .  F a m i l i e s a r e b e i n g i n t e r v i e w e d p r i o r t o commencement o f n u r s i n g r e s p i t e , a n d t h e n s i x a n d t w e l v e months l a t e r . Ongoing v e r b a l consent  i s b e i n g o b t a i n e d p r i o r t o second  and t h i r d i n t e r v i e w s , a n d f a m i l i e s a r e f r e e t o w i t h d r a w from t h e s t u d y a t any t i m e .  The e v a l u a t i o n s t u d y h a s b e e n  approved by t h e U n i v e r s i t y o f B r i t i s h Columbia B e h a v i o r a l S c i e n c e s S c r e e n i n g Committee f o r Research  and Other  Studies  I n v o l v i n g Human S u b j e c t s . At t h e convenience  o f i n f o r m a n t s , members o f t h e  r e s e a r c h team a r e c o n d u c t i n g u n s t r u c t u r e d i n t e r v i e w s i n f a m i l i e s ' homes.  These i n t e r v i e w s a r e b e i n g a u d i o t a p e d and  transcribed f o rlater analysis.  In addition, researchers  22  are r e c o r d i n g f i e l d notes p e r t a i n i n g t o t h e i n t e r v i e w s e t t i n g , t h e i n t e r v i e w process, as w e l l as p e r s o n a l o b s e r v a t i o n s w h i c h may i n f l u e n c e d a t a c o l l e c t i o n a n d analysis. data. all  These f i e l d notes c o m p r i s e a d d i t i o n a l s o u r c e s o f  Once t y p e d ,  i n t e r v i e w t r a n s c r i p t s a r e reviewed  f o u r members o f t h e r e s e a r c h team.  by  After individual  members c o d e t r a n s c r i p t s , t h e t e a m meets t o compare a n a l y s e s and t o d i s c u s s concepts  and c a t e g o r i e s emerging  from t h e data. Early i n t h i s a n a l y t i c process,  I became i n t e r e s t e d i n  p a r e n t a l s o c i a l s u p p o r t , b u t l a t e r came t o s e e s u p p o r t i v e aspects o f p e d i a t r i c n u r s i n g r e s p i t e as p a r t o f a  broader  issue related t o c h i l d care.  I thus chose t o pursue t h i s  concept o f c h i l d care through  further analysis.  To  d i f f e r e n t i a t e my p o r t i o n o f t h e a n a l y s i s f r o m t h e m a i n s t u d y , w h i l e r e c o g n i z i n g t h e i n t e r r e l a t i o n s h i p between t h e two,  I n e g o t i a t e d w i t h t h e r e s e a r c h team t o a n a l y z e  t h a t a d d r e s s how p a r e n t s u t i l i z e form o f c h i l d c a r e .  data  n u r s i n g r e s p i t e c a r e as a  I acknowledge t h a t d a t a and  i n t e r p r e t a t i o n s r e l e v a n t t o t h i s a n a l y s i s may s i m u l t a n e o u s l y r e l a t e t o o t h e r c a t e g o r i e s examined by t h e r e s e a r c h team.  F u r t h e r m o r e , I r e c o g n i z e t h a t my a n a l y s i s  s h o u l d complement r a t h e r t h a n d u p l i c a t e t h e a n a l y t i c e f f o r t s o f t h e r e s e a r c h team.  To t h i s e n d , I am  c o m m u n i c a t i n g my f i n d i n g s t o t h e r e s e a r c h t e a m s o t h a t my  23  a n a l y s i s may  be p l a c e d w i t h i n t h e c o n t e x t o f b r o a d e r  study  findings. Data A n a l y s i s As i s o c c u r r i n g i n t h e e v a l u a t i o n s t u d y , I a n a l y z e d data pertaining t o c h i l d care using the constant c o m p a r a t i v e method ( S t r a u s s and C o r b i n , 1 9 9 0 ) .  Throughout  t h i s p r o c e s s , I k e p t memos i n t h e f o r m o f c o d e n o t e s , t h e o r e t i c a l n o t e s , and o p e r a t i o n a l n o t e s t o p r o v i d e a p a p e r t r a i l by w h i c h  I , t h e r e s e a r c h team, and my  thesis  committee c o u l d t r a c k t h e process o f d a t a a n a l y s i s ( S t r a u s s & Corbin).  As e a r l y a n a l y s i s r e v e a l e d c o n c e p t s  and  c a t e g o r i e s , I d i r e c t e d subsequent c o d i n g t o develop i d e a s , as w e l l as t h e i r p r o p e r t i e s and  these  dimensions.  To b e g i n c a p t u r i n g t h e p r o c e s s by w h i c h p a r e n t s c h o o s e to  u t i l i z e n u r s i n g r e s p i t e as a s o u r c e o f c h i l d c a r e , I  analyzed q u a l i t a t i v e data c o l l e c t e d during f i r s t r e s p i t e ) and s e c o n d six  families.  e n a b l e d me  (pre-  (six-month) v i s i t s w i t h the parents  of  A n a l y z i n g d a t a c o l l e c t e d a t two t i m e p o i n t s  t o examine t h e e v o l v i n g n a t u r e o f  parent  d e c i s i o n - m a k i n g r e l a t e d t o t h e i r use o f n u r s i n g r e s p i t e . A l t h o u g h p a r e n t s had n o t e x p e r i e n c e d n u r s i n g r e s p i t e a t t h e time of i n i t i a l  interviews, their intention to u t i l i z e  s e r v i c e suggested  t o me  that these interviews could provide  i n f o r m a t i o n r e g a r d i n g t h e i r use o f n u r s i n g r e s p i t e as care.  this  child  24  The  d e c i s i o n t o analyze a p r e s e l e c t e d subset of the  d a t a f r o m t h e e v a l u a t i o n s t u d y was considerations.  b a s e d on  pragmatic  These c o n s i d e r a t i o n s i n c l u d e t h e  a v a i l a b i l i t y o f t r a n s c r i p t s f r o m f i r s t and s e c o n d w i t h a g i v e n f a m i l y , t h e number and l o c a t i o n o f  visits scheduled  f a m i l y v i s i t s d u r i n g t h e a n a l y s i s p h a s e o f my t h e s i s ,  and  t h e l o g i s t i c s o f a c c e s s i n g d a t a c o l l e c t e d by a n o t h e r member o f t h e r e s e a r c h t e a m i n a t i m e l y manner. My c h o i c e t o a n a l y z e p r e s e l e c t e d d a t a s u g g e s t s t h i s s t u d y c o u l d be c o n s i d e r e d a f o r m o f s e c o n d a r y (Thome, 1994).  that analysis  These d a t a e v o l v e d w i t h i n t h e c o n t e x t o f  research questions guiding the larger evaluation study, w h i c h r a i s e s t h e i s s u e o f f i t b e t w e e n t h e s e d a t a and r e s e a r c h q u e s t i o n p o s e d i n my (Thome).  p o r t i o n of the  the  analysis  I f t h e s e d a t a had b e e n c o l l e c t e d w i t h my  more  s p e c i f i c r e s e a r c h q u e s t i o n i n mind, t h e f i t between t h e d a t a and my analysis  q u e s t i o n w o u l d be s t r o n g e r , and t h e  denser.  While the matter of " f i t " o f my  resulting  study design which  c a l l s a t t e n t i o n t o an  i s c h a r a c t e r i s t i c of  a n a l y s i s , other aspects of t h i s design suggest a n a l y s i s u s i n g m o d i f i e d grounded t h e o r y . involvement  secondary primary  For example,  i n d a t a c o l l e c t i o n and a n a l y s i s w i t h i n  c o n t e x t o f t h e e v a l u a t i o n s t u d y p r o v i d e d me w i t h  a v a i l a b l e t o a secondary  my  the  insight  r e g a r d i n g s u b t l e i n f l u e n c e s on t h e d a t a s e t s , i n s i g h t i s not always  aspect  which  a n a l y s t (Thome,  25  1994).  In a d d i t i o n ,  since early data analysis  f o r t h e l a r g e r s t u d y s e n s i t i z e d me r e s p i t e as s o c i a l s u p p o r t , and t o p i c o f study  t o the idea of nursing  subsequently c h i l d care,  my  "emerged" f r o m t h e d a t a , a p r o c e s s i n  keeping w i t h grounded t h e o r y s i n c e my  conducted  ( G l a s e r , 1992).  Furthermore,  s t u d y i s an i n t e g r a l p a r t o f t h e l a r g e r  study  which i s c u r r e n t l y i n p r o g r e s s , o p p o r t u n i t i e s e x i s t w i t h i n the l a r g e r study t o v a l i d a t e , f r o m my  r e f u t e , and  refine  study.  S i n c e haphazard  use o f s e c o n d a r y  analysis  undermine t h e c r e d i b i l i t y o f s t u d y f i n d i n g s I f e e l compelled "fit".  t o address  A t t h e same t i m e ,  (Thorne,  i t i s important t o note  I r a i s e t h e i s s u e o f whether o r n o t t h i s  r e f l e c t upon how  that  reflect  theory study represents a primary o r secondary  this  grounded analysis  t h e f i t between  r e s e a r c h q u e s t i o n and p r e s e l e c t e d d a t a s e t s m i g h t study  1994),  (Strauss &  C o r b i n , 1994), and t h a t t h e s t u d y d e s i g n may  t h a t t h e r e a d e r may  may  f o r the reader t h i s question of  g r o u n d e d t h e o r y i s a method i n t r a n s i t i o n  fact.  findings  so  my  influence  findings.  S i x Family v i g n e t t e s P r i o r t o d i s c u s s i n g study f i n d i n g s , family vignettes. and  I present s i x  To p r o t e c t t h e a n o n y m i t y o f  individuals  f a m i l i e s p a r t i c i p a t i n g i n t h i s s t u d y , I have c h a n g e d  t h e i r names.  These v i g n e t t e s d e s c r i b e each  child's  m e d i c a l l y complex c o n d i t i o n , as w e l l as i d e n t i f y s o u r c e s  of  26  c h i l d care other than nursing r e s p i t e care which parents may use. The Adams.  Abby and J i m Adams are the parents o f 15  year o l d Mona, and 17 year o l d Mark.  Mona has end-stage  r e n a l f a i l u r e , and r e c e i v e s overnight d i a l y s i s a t home. Jim i s unemployed and Abby works f u l l - t i m e o u t s i d e o f home. Mona and Abby are the d i a l y s i s experts i n the f a m i l y . While Mark knows how t o i n i t i a t e d i a l y s i s , he views i t as a chore and p a r t i c i p a t e s i n f r e q u e n t l y .  Jim i s not i n v o l v e d  i n any t e c h n i c a l aspects o f Mona's c a r e .  While Mona  i n i t i a t e s and troubleshobts her d i a l y s i s , Abby  performs  these tasks when Mona i s f e e l i n g t i r e d o r i l l . A d d i t i o n a l l y , s i n c e Mona sleeps through the d i a l y s i s pump alarms, Abby i s o f t e n up a t night attending t o t h e dialysis. While Abby does not want nursing r e s p i t e  throughout  the n i g h t , she f e e l s t h a t i t i s h e l p f u l when Mona i s t o o s i c k t o i n i t i a t e her own d i a l y s i s , and the d u r i n g e a r l y hours o f the teenager's s l e e p before Abby goes t o bed. They r e c e i v e 16 hours o f r e g u l a r l y scheduled r e s p i t e per week and 8 f l e x i b l e hours which may be scheduled a t t h e i r convenience.  Other sources o f care f o r Mona never arose  during our i n t e r v i e w s . The Bentleys. A l i c e Bentley i s the s i n g l e mother o f 23 month o l d Eddie.  An o n l y c h i l d , Eddie has a severe s e i z u r e  d i s o r d e r r e q u i r i n g medication, i s developmentally  delayed,  27  has  v i s u a l and a u d i t o r y d e f i c i t s , and r e c e i v e s t o t a l  n u t r i t i o n v i a a J-tube.  Due t o h e r s o n ' s c a r e n e e d s ,  i s u n a b l e t o w o r k o u t s i d e t h e home a n d t h u s r e c e i v e s assistance.  Alice social  A l i c e e x p e c t s E d d i e t o d i e and has a l r e a d y  made f u n e r a l a r r a n g e m e n t s . Although Eddie's b i o l o g i c a l father l i v e s i n a d i s t a n t t o w n , he a n d A l i c e k e e p i n t o u c h b y phone. cared  Eddie's  father  f o r h i m o n e summer f o r a month; a n d h a s o f f e r e d t o do  t h i s again.  A l i c e a l s o h a s a b o y f r i e n d who l i v e s n e a r b y .  W h i l e he s t a y s w i t h E d d i e f o r b r i e f p e r i o d s , he i s apparently  f r i g h t e n e d t h a t E d d i e may d i e i n h i s c a r e a n d  consequently babysits i n f r e q u e n t l y . A l i c e h a s a l a r g e e x t e n d e d f a m i l y , most o f whom d o n o t l i v e i n c l o s e enough p r o x i m i t y t o p r o v i d e c h i l d c a r e her son. she  A l t h o u g h h e r s i s t e r sometimes h e l p s w i t h  h a s a f a m i l y o f h e r own, a n d t h u s  responsibilities. provides  for Eddie,  other  A l i c e m e n t i o n s o n l y o n e f r i e n d who  c h i l d c a r e , b u t when E d d i e s e i z e s , A l i c e i s  uncomfortable asking her f r i e n d t o babysit. overnight  Eddie  receives  d a y c a r e t w i c e a week i n t h e home o f a l i c e n s e d  daycare provider. When A l i c e f i r s t h e a r d a b o u t t h e N u r s i n g  Respite  Program, she d i d n o t t h i n k t h a t h e r c h i l d would be eligible.  A f t e r Eddie's c o n d i t i o n d e t e r i o r a t e d , a health  care provider involved i n his care r e f e r r e d Eddie t o t h e Nursing  R e s p i t e Program.  F o l l o w i n g an e l i g i b i l i t y  28  assessment, Eddie and h i s mother were a l l o c a t e d 16 hours of nursing r e s p i t e per week t o be used a t A l i c e ' s The Carvers.  convenience.  June and Jacob Carver a r e t h e parents o f  11 month o l d twins who were born a t 28 weeks g e s t a t i o n a l age.  One o f the twins, Hugh, has bronchopulmonary  d y s p l a s i a , and h i s care i n c l u d e s the use o f oxygen, feeding pumps, and medications.  Both parents have c h i l d r e n from  p r i o r marriages. June's three year o l d son c o n s i s t e n t l y l i v e s with them, while Jacob's 6 year o l d daughter with t h i s f a m i l y i n t e r m i t t e n t l y . i n t e r v i e w , June was pregnant.  lives  At the time o f the f i r s t  In view o f the twins'  premature d e l i v e r y , t h i s pregnancy was considered high risk. While June i s a homemaker, Jacob's work i n v o l v e s frequent out-of-town t r a v e l .  Due t o June's high r i s k  pregnancy and her husband's work schedule, June's mother helps with Hugh's care while Jacob i s away. f i r s t i n t e r v i e w , June expressed ambivalence nursing r e s p i t e c a r e .  During the about  receiving  She wondered i f i t would be worth  the h a s s l e o f i n v o l v i n g strangers i n Hugh's care, p r e f e r r i n g t o use f a m i l y and f r i e n d s f o r c h i l d c a r e .  Hugh  and h i s parents r e c e i v e 12 hours o f r e s p i t e care per week. The Darwins. L i s a and Garth are the married parents of e i g h t month o l d Kevin.  Kevin i s developmentally delayed  and has a severe s e i z u r e d i s o r d e r which i n t e r m i t t e n t l y causes apneic episodes.  When s e i z u r e s i n t e r f e r e with h i s  29  breathing, Kevin r e c e i v e s supplemental oxygen as w e l l as medications.  He a l s o has a g-tube f o r f e e d i n g s .  Garth  has  p a i d employment while L i s a s t a y s home t o c a r e f o r Kevin. L i s a ' s adolescent niece l i v e s with t h i s f a m i l y . Garth and L i s a know few people capable of c a r i n g f o r Kevin i n t h e i r absence.  While L i s a ' s brother sometimes  helps with c h i l d care when parents are i n the v i c i n i t y ,  he  "panics" when Kevin r e q u i r e s medical a t t e n t i o n . A l t e r n a t i v e l y , with the exception of s e i z u r e management, L i s a ' s niece understands  Kevin's care needs and with  supervision, assists i n his care.  For example, she might  watch Kevin while L i s a naps, knowing t h a t she may i f he s e i z e s or becomes apneic.  wake L i s a  However, n e i t h e r parent  wants t o give t h i s niece f u l l r e s p o n s i b i l i t y f o r Kevin's care.  Nor do they want t o overburden  any f a m i l y member  with the r e s p o n s i b i l i t y o f c a r i n g f o r a c h i l d who  may  suddenly d i e . In a d d i t i o n t o L i s a ' s brother and n i e c e , and the Nursing Respite Program, the o n l y other source of c h i l d care which L i s a d e s c r i b e s i s monthly weekend r e s p i t e a t a r e h a b i l i t a t i o n centre f o r children.  L i s a emphasizes t h a t  without nursing r e s p i t e c a r e , she would pursue bi-weekly weekend r e s p i t e care a t t h i s c e n t r e .  The Darwins r e c e i v e  16 hours of r e s p i t e per week. The Emerys. month o l d Ben.  T i n a Emery i s the s i n g l e mother of 26  Ben has c e r e b r a l p a l s y , q u a d r i p l e g i a ,  30  s e i z u r e s , v i s u a l and a u d i t o r y d e f i c i t s , c h r o n i c r e n a l f a i l u r e , and an i n t e r m i t t e n t oxygen requirement.  Tina  and  her son r e c e n t l y moved t o B r i t i s h Columbia t o l i v e with Tina's parents.  Although T i n a wants t o work o u t s i d e the  home t o support h e r s e l f and her son, she has been unable t o make the necessary  c h i l d care arrangements.  A f t e r three a p p l i c a t i o n s t o the Nursing  Respite  Program and c o n s i d e r a b l e personal e f f o r t by T i n a , she  and  her son were f i n a l l y a l l o c a t e d e i g h t hours o f n u r s i n g r e s p i t e care per week, an amount which T i n a f e e l s i s inadequate.  A f t e r i n v e s t i n g time and energy i n s e c u r i n g  n u r s i n g r e s p i t e s e r v i c e s , T i n a f e a r s t h a t i f her son's c o n d i t i o n shows any improvement, her nursing r e s p i t e hours might be revoked, d e s p i t e the f a c t t h a t an improvement i n her son's c o n d i t i o n does not r e f l e c t a s i g n i f i c a n t change in his caregiving  requirements.  While Tina and her son l i v e with Tina's parents, Tina's mother i s t r a i n e d t o care f o r Ben,  and  f a m i l y members  agree t h a t Ben's care i s Tina's r e s p o n s i b i l i t y .  Although  Tina i s e x p l o r i n g and u t i l i z i n g other c h i l d care o p t i o n s , she i s concerned about the impact of these c h i l d arrangements on her son's f r a g i l e c o n d i t i o n . In  care one  temporary arrangement, a c a r e g i v e r d i d not know how intervene i f Ben became a c u t e l y i l l  to  and r e q u i r e d oxygen.  In another ongoing s i t u a t i o n , Ben's exposure t o many c h i l d r e n and a d u l t s increases h i s chance of developing  a  31  respiratory infection.  When Ben becomes i l l ,  h i s care  needs a r e more c o m p l e x , t a x i n g b o t h m o t h e r a n d c h i l d . The  Fowlers.  E r i n and F r a n k F o w l e r  p a r e n t s o f 27 month o l d E m i l y .  are the married  F o l l o w i n g t h e removal o f a  b r a i n tumor, E m i l y has had h y p o t h a l a m i c  syndrome, d i a b e t e s  i n s i p i d u s , an e a t i n g d i s o r d e r f r o m damage t o h e r s a t i a t i o n c e n t e r , a s l e e p d i s o r d e r , and v i s u a l impairment. m e t a b o l i c imbalance intervention.  Her  r e q u i r e s 24 h o u r m o n i t o r i n g a n d  Both p a r e n t s work f u l l - t i m e , and a r e  involved i n Emily's care. F r a n k has 3 c h i l d r e n f r o m a f i r s t m a r r i a g e . 15 a n d Doug, age 9, p r i m a r i l y l i v e  Bill,  age  i n t h e i r f a t h e r ' s home,  w h i l e C a r l a , age 12 l i v e s w i t h h e r b i o l o g i c a l m o t h e r . T h e s e t h r e e s i b l i n g s l i v e t o g e t h e r o n weekends, a l t e r n a t i n g b e t w e e n t h e i r f a t h e r ' s a n d m o t h e r ' s homes.  Bill  i s capable  o f c a r i n g f o r E m i l y , a n d sometimes b a b y s i t s s o t h a t t h e p a r e n t s may r u n e r r a n d s . lesser extent.  Carla also babysits, but t o a  Doug o f t e n e n t e r t a i n s E m i l y , b u t i s n o t  involved i n her physical care.  When E r i n a n d F r a n k  delegate Emily's care t o s i b l i n g s , they provide various l e v e l s o f back-up i n k e e p i n g w i t h t h e knowledge and a b i l i t y o f s i b l i n g s t o manage E m i l y ' s h e a l t h c a r e n e e d s . E r i n and F r a n k h a v e h i r e d a n d e x t e n s i v e l y t r a i n e d a n o n p r o f e s s i o n a l daycare  p r o v i d e r who b a b y s a t  Emily p r i o r t o  the development o f h e r tumor, h e r s u r g e r y , and subsequent metabolic complications.  S i n c e t h i s p e r s o n does n o t h a v e a  32  h e a l t h c a r e b a c k g r o u n d , t h e p a r e n t s p r o v i d e back-up f o r more complex c a r e g i v i n g r e s p o n s i b i l i t i e s  and t r y t o  s c h e d u l e t h e s e a c t i v i t i e s d u r i n g h o u r s when t h e y a r e home. I n an emergency, t h i s p e r s o n may  c o n t a c t E r i n a t work, o r  Emily's physician. Although t h e week, and  t h e p a r e n t s have r e g u l a r c h i l d c a r e d u r i n g r e c e i v e some c h i l d c a f e a s s i s t a n c e f r o m  Emily's older s i b l i n g s , night.  Consequently,  they are s t i l l  up w i t h h e r  they p r i m a r i l y schedule  every  16 h o u r s o f  t h e i r n u r s i n g r e s p i t e t o e n a b l e them t o s l e e p a t n i g h t . They a l s o have 8 f l e x i b l e r e s p i t e h o u r s t o s c h e d u l e their  at  convenience. Summary The  information i n these vignettes provides  c o n t e x t u a l backdrop f o r the d i s c u s s i o n o f study date.  Throughout t h i s d i s c u s s i o n , I r e f e r t o  i n d i v i d u a l s , but attempt presented  to limit  i n the v i g n e t t e s .  a findings  specific  r e p e t i t i o n of information  When q u o t i n g p a r e n t s , I  t o t h e p a r e n t by h i s o r h e r h y p o t h e t i c a l name and t h e r e s e a r c h e r u s i n g t h e l e t t e r R. q u o t a t i o n s are noted  The  fefer  refer  soufces of  to  specific  i n brackets f o l l o w i n g each q u o t a t i o n .  F o r example, S1T1P3L2 i n d i c a t e s s t u d y f a m i l y number (SI), v i s i t  to  o r t i m e one  one  ( T I ) , t r a n s c r i p t page 3 ( P 3 ) ,  and  l i n e number 2 ( L 2 ) . I n t h e f o l l o w i n g a n a l y s i s , t h e grounded approach d e s c r i b e d i n Chapter  theory  2 p r o v i d e d an e f f e c t i v e means  33  t o e x p l o r e how  t h e s e p a r e n t s choose t o use n u r s i n g r e s p i t e  as a form, o f c h i l d c a r e , a s o c i a l little  i s known.  process about which  W e l l s u i t e d t o e x p l o r i n g t h e unknown,  grounded t h e o r y i s a l s o designed t o generate t h e o r y , a p r o c e d u r e w h i c h began w i t h t h i s a n a l y s i s .  Through c o n s t a n t  c o m p a r a t i v e a n a l y s i s , r e l a t i o n s h i p s between c o n c e p t s  and  c a t e g o r i e s emerged t o d e l i n e a t e t h e d e c i s i o n - m a k i n g p r o c e s s of  p a r e n t s u t i l i z i n g n u r s i n g r e s p i t e as a f o r m o f  care.  To b e g i n t h e d i s c u s s i o n o f s t u d y f i n d i n g s ,  describe the core category, perpetual innovation.  child I  34  Chapter 3 Perpetual Innovation; C h i l d Care f o r C h i l d r e n w i t h M e d i c a l l y Complex  Conditions  This i s a s t o r y of perpetual innovation, which describes the ongoing m o d i f i c a t i o n s t h a t parents  make i n  c h i l d c a r e a r r a n g e m e n t s f o r t h e i r c h i l d who has a m e d i c a l l y c o m p l e x c o n d i t i o n when n u r s i n g r e s p i t e c a r e i s a n o p t i o n . These m o d i f i c a t i o n s e n a b l e p a r e n t s  t o attempt t o f u l f i l l  other roles, t o sustain relationships with other  family  members a n d f r i e n d s , t o c a r e f o r s e l f , p u r s u e l e i s u r e a c t i v i t i e s , o r enhance p e r s o n a l The  development.  term perpetual innovation captures  c r e a t i v i t y with which parents  t h e ongoing  approach t h e t a s k o f  p r o v i d i n g a safe care environment f o r t h e i r c h i l d , e n a b l i n g them t o f u l f i l l  while  o t h e r r o l e s and r e s p o n s i b i l i t i e s .  P a r e n t s c o n s i d e r c o m p e t e n t c a r e g i v e r s f o r t h e i r c h i l d t o be a f i n i t e resource.  Since t h e i r child's well-being often  demands c a r e g i v e r s t o p o s s e s s m e d i c a l  knowledge and  t e c h n i c a l s k i l l w i t h i n t h e realm o f nursing  qualifications,  parents  of child  o f t e n v i e w nurses as unique sources  W h i l e n u r s i n g s k i l l s a r e o f t e n i n demand b y p a r e n t s  care. who  r e q u i r e c a r e f o r a c h i l d who h a s a m e d i c a l l y c o m p l e x c o n d i t i o n , p a r e n t a l access is  finite.  Maximizing  t o in-home n u r s i n g r e s p i t e  the use o f t h i s l i m i t e d  becomes a n u n e n d i n g e n d e a v o r .  care  resource  35  Situational Factors When u s i n g n u r s i n g r e s p i t e a s a s o u r c e o f c h i l d  care  r  v a r i o u s f a c t o r s i n f l u e n c e p a r e n t a l engagement i n p e r p e t u a l innovation.  These f a c t o r s r e l a t e t o t h e c h i l d , t h e  p a r e n t s , t h e n u r s e s , and n u r s i n g r e s p i t e program operations. Child-related factors.  The c h i l d ' s a g e , d e v e l o p m e n t a l  l e v e l , h e a l t h , and a b i l i t y t o p r o v i d e s e l f c a r e i n f l u e n c e t h e type o f c a r e g i v i n g arrangement a c c e p t a b l e t o p a r e n t s . C h r o n o l o g i c a l l y a n d d e v e l o p m e n t a l l y 15 y e a r s o l d , Mona Adams i s t h e o n l y c h i l d i n t h i s s t u d y c a p a b l e o f p r o v i d i n g self care.  When h e a l t h y e n o u g h , s h e i n i t i a t e s a n d  t r o u b l e s h o o t s h e r own p e r i t o n e a l d i a l y s i s .  I ftoosick t o  manage h e r own d i a l y s i s , h e r m o t h e r e i t h e r d e l e g a t e s  this  r e s p o n s i b i l i t y t o a nurse o r i n i t i a t e s d i a l y s i s h e r s e l f . I n contrast, parents o f a preschool-aged  c h i l d manage t h e i r  c h i l d ' s medical c o n d i t i o n i n a l l s i t u a t i o n s . P a r e n t s a l s o c o n s i d e r t h e s t a b i l i t y and p r e d i c t a b i l i t y o f t h e i r c h i l d ' s c o n d i t i o n , r e c o g n i z i n g t h a t c a r e g i v e r s may n e e d t o a s s e s s a n d manage a s u d d e n a c u t e c h a n g e i n t h e condition.  F o r e x a m p l e , K e v i n D a r w i n ' s s e i z u r e s may  unpredictably t r i g g e r apneic episodes.  This p o s s i b i l i t y  makes i t d i f f i c u l t f o r p a r e n t s t o l e a v e t h e c h i l d b r i e f l y w i t h a c a r e g i v e r who d o e s n o t know CPR.  even  In  a d d i t i o n , when a c h i l d ' s c a r e i n v o l v e s s p e c i a l i z e d  36  equipment l i k e t h a t u s e d  f o rdialysis,  oxygen  administration, o r suctioning, parents consider  these  complex needs when c h o o s i n g a c a r e g i v e r . Parent-related factors•  Above and beyond t h e p h y s i c a l  and  emotional care that parents provide t o t h e i r c h i l d  has  a m e d i c a l l y complex c o n d i t i o n , p a r e n t s have o t h e r  roles, responsibilities, these a c t i v i t i e s  and d e s i r e s t o f u l f i l l .  who  Many o f  are optimized i f parents can temporarily  delegate c a r e g i v i n g r e s p o n s i b i l i t i e s t o another c a r e g i v e r . Parents 1.  i n t h i s study seek c h i l d c a r e i n order t o : Perform  household  groceries, paying b i l l s ,  responsibilities,  such as buying  washing c l o t h e s o r c l e a n i n g t h e  home; 2.  S u s t a i n i n t e r p e r s o n a l r e l a t i o n s h i p s w i t h a spouse,  o t h e r c h i l d r e n , extended  family, or friends;  3.  Care f o r s e l f ,  4.  Earn a l i v i n g t o support s e l f and f a m i l y .  In  and p u r s u e p e r s o n a l a s p i r a t i o n s ; o r  a d d i t i o n t o c a r e p r o v i d e d by n u r s e s t h r o u g h t h e  N u r s i n g R e s p i t e Program, p a r e n t s may u s e o t h e r f o r m s o f c h i l d care t o accomplish  t h e s e a c t i v i t i e s . When c h o o s i n g t o  u t i l i z e nursing r e s p i t e care o r another  form o f c h i l d  care,  p a r e n t s c o n s i d e r t h e l e v e l o f back-up w h i c h t h e y a r e a b l e to  provide potential caregivers while s t i l l  t h e above a c t i v i t i e s . to  accomplishing  T o e x e m p l i f y , when h e r n i e c e i s home  w a t c h K e v i n , L i s a D a r w i n i s a b l e t o nap, knowing t h a t i f  K e v i n s e i z e s o r becomes a p n e i c , s h e w i l l b e awakened b y h e r  37  niece.  However, s i n c e h e r n i e c e d o e s n o t know how t o  manage K e v i n ' s s e i z u r e s L i s a c o u l d n o t ,  f o r example,  leave  home t o g e t g r o c e r i e s . RN-related  f a c t o r s . W h i l e an i n - d e p t h  d e s i r a b l e and u n d e s i r a b l e  discussion of  a t t r i b u t e s o f nurses  providing  in-home r e s p i t e c a r e t o c h i l d r e n i s b e y o n d t h e s c o p e o f t h i s r e p o r t , i t i s noteworthy t h a t parents p e r c e i v e knowledge and t e c h n i c a l s k i l l other p o t e n t i a l caregivers.  t o s e t nurses apart Parents value  nursing  from  agency e f f o r t s  t o r e c r u i t n u r s e s whose p r o f e s s i o n a l k n o w l e d g e a n d s k i l l match t h e i r c h i l d ' s c o n d i t i o n and c a r e needs. p a r t i c u l a r , they value  In  n u r s e s who a r e f a m i l i a r w i t h  c h i l d ' s s p e c i f i c c a r e needs and s i t u a t i o n a l  their  factors  i n f l u e n c i n g t h o s e needs. F o r example, i f a c h i l d has a s e i z u r e d i s o r d e r , p a r e n t s v a l u e a n u r s e who d e m o n s t r a t e s e f f e c t i v e s e i z u r e management s k i l l s w h i c h  incorporate  s u b t l e management s t r a t e g i e s s p e c i f i c t o t h e i r  child.  Drawing on p r o f e s s i o n a l knowledge, assessment as w e l l a s p r o b l e m - s o l v i n g  skills,  a n d c r i s i s management a b i l i t i e s ,  t h e n u r s e ' s judgment i n m a n a g i n g t h e i r c h i l d ' s m e d i c a l c o n d i t i o n i s regarded by p a r e n t s as an a s s e t . valued  Highly  nurses a l s o demonstrate i n i t i a t i v e t o care f o r t h e  c h i l d beyond a c u s t o d i a l l e v e l , c a p i t a l i z i n g on o p p o r t u n i t i e s t o promote t h e c h i l d ' s development and acquisition of social  skills.  38  F a c t o r s r e l a t e d t o N u r s i n g R e s p i t e Program o p e r a t i o n s . The  manner i n w h i c h p a r e n t s u s e n u r s i n g r e s p i t e c a r e  depends i n p a r t on N u r s i n g R e s p i t e P r o g r a m o p e r a t i o n s . example, program e l i g i b i l i t y c r i t e r i a  i n f l u e n c e t h e number  o f h o u r s o f n u r s i n g r e s p i t e c a r e p e r week r e c e i v e d b y c h i l d and  a  h i s o r h e r p a r e n t s , as w e l l as t h e d u r a t i o n i n  weeks o r months t h a t N u r s i n g r e s p i t e i s p r o v i d e d . illustrate  For  the l a t t e r ,  T i n a Emery d i s c u s s e s h e r  t o u s e n u r s i n g r e s p i t e t o make l o n g - t e r m  To inability  plans i n her  s i n c e an i m p r o v e m e n t i n Ben's c o n d i t i o n may  life  r e s u l t i n him  b e i n g d i s c h a r g e d from t h e n u r s i n g r e s p i t e program. T i n a : I t ' s w o n d e r f u l b u t i t c a n be t a k e n away f r o m y o u a s f a s t a s y o u g e t i t . . . . So t h a t ' s e x t r a a d d e d p r e s s u r e t h a t one has t o d e a l w i t h i s , um, d o n ' t p l a n t o o much w i t h y o u r l i f e b e c a u s e , um, i t c o u l d end (S8T1P18L48-55). U l t i m a t e l y , T i n a w o u l d l i k e t o be a b l e t o w o r k o u t s i d e t h e home f o r p a y ,  but her d e s i r e t o use n u r s i n g r e s p i t e f o r  t h i s p u r p o s e i s f u r t h e r s t y m i e d by t h e p r o g r a m ' s m i s s i o n statement which precludes p a r e n t a l use of n u r s i n g r e s p i t e t i m e f o r employment. N u r s i n g r e s p i t e program o p e r a t i o n s a l s o i n f l u e n c e parents' a b i l i t y t o schedule convenience.  nursing r e s p i t e at  F l e x i b i l i t y i n s c h e d u l i n g , and  their  a b i l i t y of  the  n u r s i n g a g e n c y t o p r o v i d e n u r s e s on s h o r t n o t i c e , i s p a r t l y d e t e r m i n e d by t h e a v a i l a b i l i t y  of i n d i v i d u a l nurses  hired  39  by t h e agency t o d e l i v e r n u r s i n g r e s p i t e c a r e t o a particular child. less  While  i n d i v i d u a l n u r s e s may be more o r  f l e x i b l e o r w i l l i n g t o work a t t h e l a s t m i n u t e , i t i s  u l t i m a t e l y t h e a g e n c y ' s r e s p o n s i b i l i t y t o meet t h e p a r e n t ' s s c h e d u l i n g needs.  I f parents a r e unable t o schedule  n u r s i n g r e s p i t e c a r e a t p r e f e r r e d t i m e s , t h e n t h e agency may n e g o t i a t e work h o u r s w i t h i n d i v i d u a l n u r s e s , o r h i r e o t h e r n u r s e s t o meet p a r e n t s ' d e s i r e d s c h e d u l i n g n e e d s . A l i c e B e n t l e y d i s c u s s e s t h e importance  of flexible  s c h e d u l i n g , but s i m u l t a n e o u s l y r e v e a l s t h a t she n e g o t i a t e s her r e s p i t e schedule around t h e a v a i l a b i l i t y o f agency nurses. A l i c e : The way t h e n u r s i n g works and s t u f f i t ' s a l l been r e a l l y good a n d y o u know t h e y do i t a r o u n d my s c h e d u l e and n o t , n o t t h e i r s .... I f n e i t h e r o f ( t h e nurses) a r e a v a i l a b l e on a day t h e n I've g o t , t h e n I can j u s t change t h a t day o r whatever, t o another day. (S2T2P33L41-P34L3) As a s i n g l e mother home on s o c i a l a s s i s t a n c e , A l i c e ' s primary r e s p o n s i b i l i t y  i s c a r i n g f o r her c h i l d .  Her d a y s  are u n s t r u c t u r e d , so she i s a b l e t o n e g o t i a t e h e r r e s p i t e s c h e d u l e w i t h t h e p r e f e r r e d work s c h e d u l e s o f t h e a g e n c y nurses.  I n c o n t r a s t , E r i n and F r a n k  Fowler  have m u l t i p l e  work and f a m i l y r e s p o n s i b i l i t i e s and need t h e n u r s e s t o accommodate p a r e n t a l s c h e d u l i n g n e e d s .  They  primarily  schedule nursing r e s p i t e care a t night t o enable t o s l e e p and t o m i n i m i z e  themselves  d i s r u p t i o n s o f having a nurse i n  40  t h e house d u r i n g w a k i n g h o u r s .  S i n c e Frank's  work d a y may  b e g i n e a r l y o r l a t e i n t h e morning, p a r e n t s t r y t o s c h e d u l e n u r s i n g r e s p i t e c a r e t o c o r r e s p o n d w i t h t h e h o u r s when parents are sleeping.  T o accommodate l a s t  minute  s c h e d u l i n g r e q u e s t s by t h e s e p a r e n t s , t h e n u r s i n g agency utilizes  a pager system.  E r i n : A t one p o i n t [ F r a n k ] went o n e a r l y s h i f t w h i c h meant we were g e t t i n g up a t t h r e e t h i r t y . F r a n k : You know we had t h e f r e e d o m t o change t h a t t i m e p r e t t y much a t w i l l . . . . E r i n : The n u r s e s a t t h e b e g i n n i n g t h o u g h t i t was a b i t u n u s u a l b e c a u s e we were h a v i n g them come a t e i g h t a t n i g h t and l e a v i n g a t f o u r i n t h e m o r n i n g and i t was a n u n u s u a l s h i f t b u t t h e y d i d n ' t mind a t a l l . . . . They d i d a s k was t h i s g o i n g t o be f o r e v e r a n d ( l a u g h t e r ) we s a i d no, i t s n o t f o r e v e r . . . . F r a n k : So b a s i c a l l y we've g o t t o l e t them know a t t h e l a s t minute s o t h a t ' s c o n v e n i e n t t o be a b l e t o do t h a t and know t h a t t h e r e ' s g o i n g t o be s o m e t h i n g done (S10T2P10L44-P11L40). Perpetual Innovation i n Context The  frequency,  i n t e n t i o n a l i t y , and e x t e n t t o w h i c h  p a r e n t s engage i n p e r p e t u a l i n n o v a t i o n when u t i l i z i n g n u r s i n g r e s p i t e c a r e f l u c t u a t e s t o complement c h i l d requirements  a s p e r c e i v e d by p a r e n t s .  care  The f r e q u e n c y o f  i n n o v a t i o n may v a r y f r o m l o w t o h i g h , t h e i n t e n t i o n a l i t y from p r o a c t i v e t o r e a c t i v e , a n d t h e e x t e n t f r o m m i n o r t o major. P a r e n t s who have p r e d i c t a b l e c h i l d c a r e needs c o u p l e d w i t h a s t e a d y , c o m p e t e n t s o u r c e o f c h i l d c a r e may p r o a c t i v e l y schedule n u r s i n g r e s p i t e hours f a r i n advance.  41  Such i n t e n t i o n a l p l a n n i n g d e c r e a s e s t h e f r e q u e n c y w i t h w h i c h p a r e n t s must m o d i f y c h i l d c a r e p l a n s . The F o w l e r s p r o v i d e e v i d e n c e o f b o t h h i g h a n d l o w frequency i n n o v a t i o n s , both o f which suggest intentionality.  proactive  On one h a n d , t h e a g e n c y knows t h a t t h e  Fowlers r e q u i r e n u r s i n g r e s p i t e c a r e on s p e c i f i c n i g h t s o f t h e week w h i c h t r a n s l a t e s t o l o w f r e q u e n c y i n n o v a t i o n a c t i v i t y by p a r e n t s .  On t h e o t h e r h a n d , t h e F o w l e r s  r e q u i r e minor adjustments  i n t h e s p e c i f i c t i m e s when t h e  nurse p r o v i d e s c a r e on t h o s e predetermined n i g h t s .  These  minor i n n o v a t i o n s occur w i t h higher frequency. The  reliability  o f nurses i n f l u e n c e s t h e  i n t e n t i o n a l i t y o f i n n o v a t i o n by p a r e n t s .  I f nurses c a n c e l  t h e i r s c h e d u l e d s h i f t s w i t h a p a r t i c u l a r c h i l d due t o p e r s o n a l i l l n e s s o r some o t h e r r e a s o n , p a r e n t s  find  themselves r e a c t i v e l y i n n o v a t i n g a t t h e l a s t minute,  either  finding substitute caregivers o r a l t e r i n g personal plans t o provide c h i l d care themselves.  T h u s , e v e n when c h i l d c a r e  requirements are p r e d i c t a b l e , planning care i s a perpetual endeavor. The e x t e n t t o w h i c h p a r e n t s e n g a g e i n p e r p e t u a l innovation also varies with the p r e d i c t a b i l i t y of parents' p e r c e i v e d c h i l d c a r e requirements, t h e f l e x i b i l i t y and a v a i l a b i l i t y o f n u r s e s h i r e d b y t h e n u r s i n g a g e n c y t o meet t h e i r s c h e d u l i n g needs, and t h e a v a i l a b i l i t y o f c h i l d c a r e options other than the nurses.  P a r e n t s who p e r c e i v e t h e i r  42  c h i l d c a r e o p t i o n s t o be  inadequate i n e i t h e r q u a l i t y  quantity often exert extensive e f f o r t to f o r t i f y c h i l d care options. perceived  their  This e f f o r t i s i n reaction to  inadequacy of a v a i l a b l e c h i l d care  the  options.  I n d e s c r i b i n g her e x t e n s i v e , frequent e f f o r t s secure  to  n u r s i n g r e s p i t e s e r v i c e s , T i n a Emery e v o k e s a  m e t a p h o r , u s i n g t e r m s s u c h as b a t t l e , f i g h t , and v i c t o r y .  or  war  ammunition,  P r i o r to receiving nursing respite services,  her s t o r y of perpetual i n n o v a t i o n suggests a r e a c t i v e i n t e n t i o n a l i t y o f m a j o r e x t e n t and  high  frequency.  A f u r t h e r i l l u s t r a t i o n of i n t e n t i o n a l i t y i s provided by t h e C a r v e r s  who  were u n s u r e a b o u t w h e t h e r o r n o t  to  u t i l i z e the n u r s i n g r e s p i t e program, p r e f e r r i n g t o  "leave  i t t o f a m i l y " (S4T1P10L44).  care  However, t h e i r c h i l d  arrangements f e l l through c o i n c i d i n g w i t h June's h o s p i t a l i z a t i o n with preterm labor.  T h i s l e f t J a c o b as  o n l y c a r e g i v e r c o m p e t e n t t o meet Hugh's c a r e n e e d s ; as r e s u l t o f c a r i n g f o r Hugh, J a c o b l o s t h i s j o b , t h e only source  o f income.  While the Carvers  the a  family's  c o u l d have  planned n u r s i n g r e s p i t e c a r e p r o a c t i v e l y , a sudden change i n s i t u a t i o n a l f a c t o r s f o r c e d Jacob t o u t i l i z e  nursing  r e s p i t e c a r e i n a r e a c t i v e manner. Perpetual Innovation S t r a t e g i e s : A  Decision-Making  Framework Throughout the process parents  of perpetual  a d o p t a number o f s t r a t e g i e s . As  innovation, situational  43  f a c t o r s c h a n g e h o u r l y , d a i l y , w e e k l y , and m o n t h l y , r e p e a t e d l y use t h e s e s t r a t e g i e s , thus e m p h a s i z i n g  parents the  c y c l i c a l n a t u r e o f p e r p e t u a l i n n o v a t i o n . These s t r a t e g i e s include: 1.  Prioritizing parental activities requiring  child  2.  E s t i m a t i n g t h e adequacy o f n u r s i n g r e s p i t e  hours  care.  t o meet p a r e n t s ' p e r c e i v e d c h i l d c a r e n e e d s . 3.  Weighing  the advantages  of nursing respite care  w i t h o t h e r forms o f c a r e . 4.  M a t c h i n g c h i l d , p a r e n t , n u r s e , and  other  s i t u a t i o n a l factors to optimize the c h i l d care Together,  situation.  these parent s t r a t e g i e s suggest a d e c i s i o n -  m a k i n g f r a m e w o r k embedded w i t h i n t h e p r o c e s s o f p e r p e t u a l innovation.  The  goal of t h i s process i s t o create  c a r e g i v i n g s i t u a t i o n s t h a t are mutually b e n e f i c i a l t o both p a r e n t and  child.  P r i o r i t i z i n g parental a c t i v i t i e s requiring c h i l d care. When p l a n n i n g n u r s i n g r e s p i t e c a r e , p a r e n t s d e s c r i b e many o p p o r t u n i t i e s w h i c h t h e y hope t h a t t h i s s e r v i c e p r o v i d e f o r them.  These o p p o r t u n i t i e s range from t h e  c o n c r e t e , s u c h as s l e e p , h o u s e h o l d c h o r e s , appointments,  t o t h e a b s t r a c t , s u c h as  r e j u v e n a t i o n , and  will  "having a  and  freedom,  life".  The d i f f e r e n t l i f e s t y l e s and r e s p o n s i b i l i t i e s  of  parents serve t o i l l u s t r a t e the process through which  they  44  p r i o r i t i z e t h e i r caregiving r e s p o n s i b i l i t i e s with other p e r s o n a l demands and d e s i r e s .  For parents with  few  caregiving options, p r i o r i t i e s often r e f l e c t basic personal needs s u c h as s l e e p , n u t r i t i o n , and p e r s o n a l c a r e .  For  t h e s e p a r e n t s , n u r s i n g r e s p i t e r e p r e s e n t s a key t o p e r s o n a l survival.  F o r e x a m p l e , T i n a Emery p o s t p o n e d some p e r s o n a l  d e n t a l s u r g e r y u n t i l s h e and h e r s o n began r e c e i v i n g n u r s i n g r e s p i t e , and has s i n c e u s e d n u r s i n g r e s p i t e  time  f o r t h i s and o t h e r b a s i c s e l f c a r e . R: So i t was r e s p i t e t h a t e n a b l e d y o u t o g e t t o t h o s e appointments. T i n a : Y e a h , y e a h , I d i d i t d u r i n g r e s p i t e t i m e s and n o t t h a t i t was much o f a b r e a k ( l a u g h s ) b e c a u s e I was f r o z e n and s t u f f b u t i t was good and I ' v e g o t t o do i t a g a i n and t h e n d u r i n g r e s p i t e I'm g o i n g t o g e t my hand l o o k e d a f t e r and t h a t , o t h e r w i s e I d o n ' t know w h a t I ' d do [ e m p h a s i s a d d e d ] ( S 8 T 2 P 1 6 L 4 2 - 4 7 ) . T i n a ' s s i t u a t i o n i l l u s t r a t e s how  parents of c h i l d r e n with  m e d i c a l l y c o m p l e x c o n d i t i o n s may  subordinate t h e i r  needs t o t h e needs o f t h e i r c h i l d ,  unable  to find  own child  care t o enable her t o a t t e n d d e n t a l appointments f o r h e r s e l f , she p u t h e r own  needs a s i d e .  Nursing  respite  enables Tina t o perform e s s e n t i a l a c t i v i t i e s t h a t o t h e r w i s e w o u l d be u n a b l e t o do; t h e s e e s s e n t i a l take  activities  priority. When d e c i d i n g how  who  she  t o use t h e i r r e s p i t e t i m e ,  have more t h a n one c h i l d c o n s i d e r t h e needs o f  other children.  parents their  F o r e x a m p l e , J u n e C a r v e r d e s c r i b e s how  her  45  h u s b a n d , J a c o b , u s e d r e s p i t e w h i l e s h e was h o s p i t a l i z e d with pre-term labor.  S i n c e Hugh's c a r e r e q u i r e d e q u i p m e n t  s u c h a s o x y g e n a n d f e e d i n g pumps, f a m i l y o u t i n g s w e r e difficult.  Thus, Jacob viewed n u r s i n g r e s p i t e as an  o p p o r t u n i t y t o s p e n d t i m e w i t h Hugh's s i b l i n g s o u t s i d e t h e home. J u n e : He w o u l d j u s t t a k e t h e k i d s , l i k e I s a i d b e c a u s e y o u c o u l d n ' t , w i t h Hugh y o u c o u i d n ' t go anywhere .... B e c a u s e t h e o t h e r k i d s w e r e a c t i v e , t h r o u g h my e x p e r i e n c e t h e y w e r e c o o p e d up a l l t h e t i m e s o we w o u l d t a k e o f f w i t h them when t h e n u r s e s come, w e l l t h e y w e r e a b l e t o r u n i n t h e f i e l d s o r w h a t e v e r ... b l o w o f f some a i r a n d y o u know t h e y ' d come home a n d t h e y w o u l d be happy s o e v e r y b o d y w o u l d be happy X e m p h a s i s added] ( S 4 T 2 P 4 L 3 8 - 4 8 ) . June's d e s c r i p t i o n suggests t h a t f u l f i l l i n g p a r e n t r o l e s and r e s p o n s i b i l i t i e s w i t h i n t h e f a m i l y may be a s a t i s f y i n g use o f r e s p i t e t i m e t o t h e e x t e n t t h a t t h i s c o n t r i b u t e s t o harmonious  time  f a m i l y environments  Nursing  r e s p i t e c a r e f o r Hugh f r e e s J a c o b t o p e r f o r m  activities  w i t h h i s o t h e r c h i l d r e n i n w h i c h Hugh c a n n o t  participate.  In  t h i s s i t u a t i o n , Jacob p r i o r i t i z e s t h e s o c i a l and  d e v e l o p m e n t a l needs o f Hugh's s i b l i n g s o v e r o t h e r p a r e n t a c t i v i t i e s f o r w h i c h r e s p i t e c a r e m i g h t be u s e d .  If  c h i l d r e n a r e h a p p y , t h e n p a r e n t s a r e happy. A l t h o u g h some p a r e n t s v i e w n u r s i n g r e s p i t e  almost  e x c l u s i v e l y as a p e r s o n a l r e l i e f , o t h e r s expect t h a t n u r s i n g r e s p i t e w i l l a l s o r e l i e v e t h e burden o f c h i l d c a r e  46  from o t h e r s .  F o r e x a m p l e , E r i n and F r a n k F o w l e r hope t h a t  n u r s i n g r e s p i t e w i l l r e l i e v e t h e i r 15 y e a r o l d s o n , from c a r i n g f o r h i s youngest s i s t e r  Bill,  Emily:  E r i n : To be a b l e t o go o u t and f e e l t h a t w h o e v e r i s h e r e c o u l d h a n d l e w h a t e v e r comes up w i t h h e r , I mean, t h e k i d s a r e e x c e l l e n t , [ B i l l ] i s v e r y good about l o o k i n g a f t e r h e r b u t i t ' s one, n o t a f a i r p o s i t i o n t h a t he's t h e o n l y one who c o u l d l o o k a f t e r h e r a n d two, i f a m e d i c a l c r i s i s happens ... i t ' s n o t a f a i r p o s i t i o n f o r him (S10T1P4L57-P5L6). W h i l e E r i n and F r a n k v a l u e B i l l ' s w i l l i n g n e s s a n d to  ability  c a r e f o r h i s y o u n g e s t s i s t e r , t h e y hope t h a t n u r s i n g  r e s p i t e w i l l p r o v i d e them w i t h o t h e r c h i l d c a r e o p t i o n s , thereby freeing B i l l  t o pursue adolescent i n t e r e s t s .  parents, they f e e l t h a t B i l l ' s developmental  growth i s a  factor influencing t h e i r c h i l d care decisions. Bill  As  Although  p r o v i d e s E r i n and F r a n k w i t h a s o u r c e o f c h i l d  care  w h i c h f a c i l i t a t e s p e r p e t u a l i n n o v a t i o n , t h e y want t o f u l f i l l p a r e n t i n g r e s p o n s i b i l i t i e s t o b o t h E m i l y and rather than subordinating B i l l ' s  Bill,  needs t o E m i l y ' s .  E s t i m a t i n g t h e adequacy of n u r s i n g r e s p i t e hours t o meet p a r e n t s ' p e r c e i v e d c h i l d c a r e n e e d s . may  While  parents  d e s i r e a c e r t a i n amount o f n u r s i n g r e s p i t e c a r e f o r  t h e i r c h i l d e a c h week, t h e number o f h o u r s f o r w h i c h a r e e l i g i b l e may c h i l d c a r e needs.  be i n a d e q u a t e  they  t o meet t h e i r p e r c e i v e d  L i s a Darwin i l l u s t r a t e s the c h a l l e n g e of  s e t t i n g p a r e n t p r i o r i t i e s when t h e p r o v i d e d h o u r s o f nursing respite are f i n i t e .  S i n c e L i s a and G a r t h  are  47  s a v i n g money t o buy a house, w h i l e she c a r e s f o r K e v i n .  h e r husband works l o n g h o u r s Except f o r nursing r e s p i t e ,  t h e y have few c h i l d c a r e o p t i o n s .  As h e r s o n K e v i n ' s  p r i m a r y c a r e g i v e r , L i s a u s e s h e r r e s p i t e t i m e t o manage t h e household, a t t e n d appointments activities  and p u r s u e p e r s o n a l  l i k e r e a d i n g , w r i t i n g l e t t e r s , o r c a t c h i n g up o n  s l e e p . She f e e l s ,  however, t h a t t h e s i x t e e n h o u r s o f  n u r s i n g r e s p i t e p e r week do n o t e n a b l e h e r and h e r husband t o spend t i m e t o g e t h e r a s a c o u p l e .  Thus, s h e f a c e s t h e  c h o i c e o f u s i n g n u r s i n g r e s p i t e t i m e f o r c h o r e s and p e r s o n a l r e s t , o r s p e n d i n g t i m e a l o n e w i t h h e r husband: L i s a : I d o n ' t f e e l t h a t i t ' s enough h o u r s due t o t h e f a c t t h a t t w e l v e o u t o f t h e s i x t e e n h o u r s I'm t a k i n g j u s t f o r m y s e l f a l o n e , my husband i s n o t d e a l i n g w i t h any o f i t e x c e p t f o r f o u r h o u r s a week .... And t h a t ' s , y o u know, b e c a u s e he's o u t w o r k i n g e v e r y d a y s o I don't f e e l t h a t i t ' s a c t u a l l y f a i r t o both p a r e n t s , f o r m y s e l f , s i x t e e n h o u r s i s g r e a t f o r me b u t I d o n ' t t h i n k i t would be a b a d i d e a i f t h e y t h r e w i n an e x t r a f o u r h o u r s l i k e , y o u know, t w e n t y h o u r s a week s o t h e n t h e husband and w i f e c a n g o o u t t o g e t h e r n o t j u s t f o u r h o u r s t h e one day .••• We want t o go o u t where we d o n ' t a l w a y s have b u r s o n w i t h u s ... and i t ' s n o t enough t i m e f o r p a r e n t s t o be t o g e t h e r ; i t ' s u s u a l l y one p a r e n t o r t h e o t h e r t h a t g e t s more o f t h e r e s p i t e t h a n t h e o t h e r o n e and i t ' s b o t h o f them g o i n g t h r o u g h i t , n o t j u s t t h e one [S5T1 P5L51-P6L19]. For L i s a ,  i n a b i l i t y t o spend more t i m e a l o n e w i t h h e r  husband i s c l e a r l y a compromise, b u t h o u s e h o l d management, s l e e p , and p e r s o n a l r e j u v e n a t i o n t a k e p r i o r i t y .  Lisa  d i f f e r e n t i a t e s between t i m e f o r h e r s e l f and t i m e w i t h h e r husband, i l l u s t r a t i n g q u a l i t a t i v e d i f f e r e n c e s i n h e r  48  d e s i r e d use o f n u r s i n g r e s p i t e time. I n o t h e r words, n u r s i n g r e s p i t e c a r e r e p r e s e n t s more t h a n a b r e a k i n Kevin's c a r e g i v i n g r o u t i n e . to f u l f i l l  I t r e p r e s e n t s an o p p o r t u n i t y  some p e r s o n a l g o a l l i k e  maintaining  relationships with others o r caring f o r s e l f . Weighing t h e advantages o f n u r s i n g r e s p i t e c a r e w i t h o t h e r forms o f c h i l d c a r e .  After p r i o r i t i z i n g desired  p a r e n t a l a c t i v i t i e s , and e s t i m a t i n g t h e adequacy o f n u r s i n g r e s p i t e hours t o cover t h e i r p e r c e i v e d c h i l d c a r e needs, p a r e n t s may d e t e r m i n e t h a t t h e i r a l l o t t e d n u r s i n g hours a r e inadequate.  Subsequently,  respite  they consider t h e care  s i t u a t i o n s i n which n u r s i n g r e s p i t e i s d e s i r a b l e and t h o s e i n which another  c a r e g i v e r , s u c h a s f a m i l y members o r d a y  c a r e p r o v i d e r s , w i l l need t o s u f f i c e . The  p a r e n t s o f f o u r c h i l d r e n , E r i n and Frank  b o t h work f u l l t i m e , and have developed  elaborate  Fowler child  c a r e arrangements f o r E m i l y which i n c l u d e s h e r s i b l i n g s , in-home d a y c a r e p r o v i d e r s , a n d n u r s i n g r e s p i t e c a r e .  For  e x a m p l e , when E r i n a n d F r a n k d e l e g a t e E m i l y ' s c a r e t o h e r s i b l i n g s , these parents  p r o v i d e l e v e l s o f back-up i n  k e e p i n g w i t h t h e knowledge and a b i l i t y o f t h e s i b l i n g s . Although  c a r e by s i b l i n g s enables  E r i n and Frank t o l e a v e  t h e h o u s e , t h e y a l w a y s s t a y i n phone c o n t a c t , p r o v i d i n g s i b l i n g s w i t h a phone number where t h e y may b e r e a c h e d , a n d c a l l i n g home t o c h e c k o n E m i l y a n d t h e o t h e r s .  According  t o t h e s e p a r e n t s , t h e t i m e t h a t t h e y s p e n d away f r o m home  49  when E m i l y ' s s i b l i n g s c a r e f o r h e r i s q u a l i t a t i v e l y d i f f e r e n t t h a n t h e t i m e s p e n t away when a n u r s e p r o v i d e s Emily with respite care: E r i n : Though t h e k i d s a r e v e r y good and v e r y c a p a b l e o f l o o k i n g a f t e r [Emily]', um, y o u a l w a y s know t h e r e c o u l d be a phone c a l l and t h e t i m e s we have u s e d t h e r e s p i t e when [ F r a n k ] and I have gone o u t f o r an e v e n i n g , I t h i n k maybe t h e r e ' s l e s s l i k e l i h o o d o f (interruption) F r a n k : You c a n r e l a x E r i n : You c a n r e l a x a b i t more F r a n k : You c a n t o t a l l y r e l a x knowing t h a t someone i s h e r e y o u know, n o t t h a t t h e y ' r e more competent b e c a u s e [ B i l l ] and [ C a r l a ] a r e p e r f e c t l y competent p e o p l e E r i n : I t ' s a b i g r i s k , i f we wanted t o go o u t a w h o l e e i g h t hour e v e n i n g we w o u l d phone home, y o u know, o v e r t h e e v e n i n g and [ B i l l ' s ] n e v e r had a p r o b l e m .... b u t you know we went o u t a c o u p l e o f t i m e s ( u s i n g n u r s i n g r e s p i t e c a r e ) ... and were a b l e t o r e l a x f o r t h e e v e n i n g and i t was ... a f a i r d r i v e f r o m h e r e y o u know, arid we knew s h o r t o f a r e a l m e d i c a l c r i s i s , we w o u l d n ' t have t o come b a c k and we've n e v e r had a c a l l f r o m t h e n u r s e s s o I t h i n k t h a t way i t s u n i q u e as w e l l t h a n f r o m t h e o t h e r k i n d o f c a r e (S10T2P20L45-P21L15).  T h i s q u o t a t i o n i l l u s t r a t e s how n u r s i n g competence may c o n t r i b u t e t o p a r e n t a l p e a c e o f mind, t h u s  influencing  s i t u a t i o n s i n which parents schedule n u r s i n g r e s p i t e i n preference t o using other sources o f c h i l d c a r e . E r i n and F r a n k u s e d i f f e r e n t  Although  sources o f c h i l d care, i t i s  apparent t h a t these sources a r e not d i r e c t l y interchangeable.  Rather, d i f f e r e n t c h i l d care o p t i o n s a r e  more o r l e s s s u i t e d t o d i f f e r e n t  situations.  While g r e a t e r  v a r i e t y i n c h i l d c a r e o p t i o n s may f a c i l i t a t e p e r p e t u a l i n n o v a t i o n by p r o v i d i n g p a r e n t s w i t h more c h o i c e , t h e competence o f s p e c i f i c c h i l d c a r e p r o v i d e r s i n f l u e n c e s t h e  50  t y p e s o f a c t i v i t i e s w h i c h p a r e n t s may p u r s u e d u r i n g c h i l d care  time. I n c o n t r a s t , some p a r e n t s , s u c h a s t h e C a r v e r s , p r e f e r  t o manage t h e i r c h i l d ' s c a r e w i t h o u t t h e i n v a s i o n o f p r i v a c y inherent i n having nurses  i n t h e home.  When t h e  C a r v e r s e x t e n d e d f a m i l y was u n a b l e t o meet Hugh's c a r e needs o n t h e i r own, J u n e a n d J a c o b c h o s e t o u t i l i z e r e s p i t e c a r e as a l a s t  nursing  resort.  J u n e : B e c a u s e o f t h e c i r c u m s t a n c e s ... we needed t h e respite we c o u l d n ' t d e p e n d o n t h e f a m i l y e v e n i f we, e v e n i f we w a n t e d t o , we c o u l d n ' t . . . . He heeded t h e n u r s e s a n d n o t t h e l o v e , he n e e d e d , he needed a l s o , I mean l o v e b u t he a l s o needed t h e m e d i c a l a t t e n t i o n i n v o l v e d (S4T2P10L54-P11L3, P l l L 4 8 - r 4 9 ) . F o r June> n u r s i n g r e s p i t e i s s o m e t h i n g t o t o l e r a t e i n o r d e r to provide safe care f o r her c h i l d .  She s t a t e s :  I r e a l l y recommend ( n u r s i n g r e s p i t e c a r e ) e v e n t h o u g h i t ' s v e r y u n c o m f o r t a b l e t o h a v e somebody i n t h e home, y o u k i n d o f have t o g r a t e [ s i c ] y o u r t e e t h a n d b e a r w i t h i t f o r y o u r c h i l d ' s s a k e , y o u know, y o u h a v e t o , t h e y ' r e ( t h e nurses a r e ) t r a i n e d (S4T2P16L32-35). The  advantages o f t h e n u r s i n g knowledge and s k i l l  related  t o h e r c h i l d ' s c a r e outweigh June's d i s c o m f o r t w i t h t h e associated invasion of privacy. Matching  c h i l d , p a r e n t , n u r s e , and o t h e r  factors t o optimize c h i l d care s i t u a t i o n .  situational  After  p r i o r i t i z i n g desired parental a c t i v i t i e s , estimating the a d e q u a c y o f n u r s i n g r e s p i t e h o u r s t o meet c h i l d c a r e n e e d s ,  51  and  weighing the  caregivers  advantages of u s i n g  i n a given  nurses or  other  s i t u a t i o n , parents coalesce  these  f a c t o r s t o arrange c h i l d care which i s mutually b e n e f i c i a l t o b o t h them and  their child.  c h i l d b e n e f i t from the To care and  caregiving  i l l u s t r a t e , E r i n and  provided  by  I d e a l l y , both parent experience.  Frank Fowler coordinate  daycare providers,  run the  children.  h o u s e h o l d , and  meet t h e  In a d d i t i o n t o scheduling  t o work,  needs o f  regular  their  nursing  r e s p i t e hours a t n i g h t , they o r i g i n a l l y used t h e i r nursing  r e s p i t e h o u r s f o r c o u p l e t i m e as w e l l as  activities continued  i n w h i c h E m i l y c o u l d not parental  shift  i n parental  participate.  exhaustion, they l a t e r decided  f l e x i b l e h o u r s w o u l d be  child  f a m i l y members, n u r s e s ,  p a r e n t s t o maximize p a r e n t o p p o r t u n i t i e s  sleep,  and  b e t t e r used a t n i g h t ,  flexible  family Due  to  that  indicating a  priorities:  E r i n : We had e i g h t ( f l e x i b l e h o u r s ) , b u t what we d i d i s t h e e i g h t o f f l e x , b e c a u s e we w e r e n ' t u s i n g i t c o n s i s t e n t l y b e c a u s e we d o n ' t go o u t a l l t h a t much . i . and b e c a u s e [ B i l l ] i s o f t e n a v a i l a b l e t o p r o v i d e a few h o u r s h e r e and t h e r e and [ C a r l a ] when s h e ' s h e r e sometimes t h a t we added t h a t o n t o Our r e g u l a r n i g h t shift. Okay, t h e n i g h t s were more i m p o r t a n t t o u s , s o r i g h t now ... t h e i n i t i a l e i g h t f l e x we a c t u a l l y schedule l i k e regular R: Okay, so t h a t g i v e s you t h r e e n i g h t s ( o f n u r s i n g r e s p i t e c a r e ) and t h e n you have an a d d i t i o n a l f o u r hours o f f l e x . B i l l : Yeah. E r i n : . . . I f we f i n d we're n o t u s i n g i t , what t h e y ' v e s u g g e s t e d i s i f i n a two week p e r i o d I h a v e n ' t u s e d up e i g h t h o u r s , t h e n i n t h a t t h i r d week I add on one more n i g h t b e c a u s e t h e n i g h t s a r e one o f t h e r o u g h e s t t i m e s f o r u s . (S10T2P6L6-24)  52  T h i s q u o t a t i o n i l l u s t r a t e s how c h a n g i n g  situational  f a c t o r s and s h i f t i n g p a r e n t a l p r i o r i t i e s r e q u i r e p a r e n t s t o c o n t i n u a l l y modify t h e i r c a r e g i v i n g arrangements, u n d e r l i n i n g t h e importance of f l e x i b i l i t y R e s p i t e Program o p e r a t i o n s . perpetual nature of these n i g h t s of  i n Nursing  I t a l s o demonstrates t h e  innovations; while the three  r e s p i t e are c o n s i s t e n t l y scheduled,  t h e use o f  f l e x t i m e v a r i e s week t o week. Consequences o f P e r p e t u a l  Innovation  As s t a t e d e a r l i e r , p e r p e t u a l i n n o v a t i o n i s c y c l i c a l i n nature.  Dynamic s i t u a t i o n a l v a r i a b l e s r e q u i r e p a r e n t s t o  c o n t i n u a l l y modify t h e i r use o f n u r s i n g r e s p i t e care i n r e l a t i o n t o o t h e r forms o f c h i l d c a r e .  Successful  i n n o v a t i o n s r e s u l t i n an e f f e c t i v e match between c h i l d , and o t h e r s i t u a t i o n a l f a c t o r s . enables parents  to fulfill  d e s i r e s other than those simultaneously  parent,  An e f f e c t i v e m a t c h  r o l e s , r e s p o n s i b i l i t i e s , and  involving direct c h i l d care,  while  ensuring a safe c h i l d care environment which  i d e a l l y enhances t h e c h i l d ' s development and s o c i a l i z a t i o n . The F o w l e r s i l l u s t r a t e p a r e n t s whose i n n o v a t i o n s  allow  them t o u t i l i z e n u r s i n g r e s p i t e c a r e i n a manner w h i c h complements o t h e r s o u r c e s  of c h i l d care while  enabling  p a r e n t s t o meet p e r s o n a l r e s p o n s i b i l i t i e s a t home a n d a t work.  F o r E r i n a n d F r a n k , n u r s i n g r e s p i t e c a r e makes t h e  d i f f e r e n c e between managing E m i l y ' s c a r e i n t h e c o n t e x t o f  53  t h e i r b u s y p e r s o n a l and f a m i l y l i v e s , and b e i n g u n a b l e meet t h e i r m u l t i p l e r e s p o n s i b i l i t i e s .  In the  to  following  q u o t a t i o n , t h e y r e s p o n d t o a p r o b e by t h e i n t e r v i e w e r w h i c h c l a r i f i e s a comment by E r i n t h a t , o f a l l p r o g r a m s i n v o l v e d i n E m i l y ' s c a r e , t h e N u r s i n g R e s p i t e P r o g r a m has had g r e a t e s t i m p a c t on  the  "us".  E r i n : P r o b a b l y on us as a c o u p l e , a g a i n t h e k i d s ... t h e y may be a f f e c t e d i f we're r e a l l y i r r i t a b l e b e c a u s e we've b e e n up a l o t w i t h [ E m i l y ] b u t I t h i n k on us as a couple F r a n k : Yeah I t h i n k t h a t more E r i n : I t has t h e most i m p a c t b e c a u s e we're g e t t i n g sleep R: Yeah E r i n : And y o u c a n t o l e r a t e a l o t more and go t h r o u g h a l o t more i f you g e t a d e c e n t n i g h t ' s s l e e p . F r a n k : F o r t h e f i r s t w h i l e t h e r e , we w e r e r u n t o o much r a g g e d and up a i l t h e t i m e and v e r y l i t t l e s l e e p and d i s j o i n t e d anyway, y o u know, um, i t was h a r d f o r t h e longest time R: B e f o r e r e s p i t e F r a n k : We w o u l d wonder i f we, y e a h , i f we were g o i n g t o be a b l e t o c o p e w i t h t h a t on an e x t e n d e d ... somehow we have t o have some h e l p { S 1 0 T 2 P 1 7 L 1 1 - 3 8 ) . Nursing r e s p i t e care provides the Fowlers w i t h the " h e l p " t h e y need t o meet t h e i r m u l t i p l e r e s p o n s i b i l i t i e s , while ensuring safe care f o r t h e i r c h i l d .  While nursing  r e s p i t e c a r e has t h e p o t e n t i a l t o e n a b l e p a r e n t s t o meet b o t h t h e i r own  needs and t h o s e o f t h e i r c h i l d , t h e r e a r e  t i m e s when p a r e n t s ' e f f o r t s t o c r e a t e s u c h  mutually  b e n e f i c i a l c h i l d c a r e arrangements are l e s s s u c c e s s f u l .  In  such c a s e s , p a r e n t s c r e a t e a match i n w h i c h e i t h e r p a r e n t s ' needs, t h e c h i l d ' s needs, o r both a r e compromised.  Such a  54  compromise i s r e p e a t e d l y e x p r e s s e d  by T i n a Emery, whose  f i g h t f o r n u r s i n g r e s p i t e care r e s u l t e d i n e i g h t hours of c a r e p e r week. inadequate,  S i n c e she f e e l s t h a t e i g h t hours i s  she a l s o u s e s c h i l d c a r e a r r a n g e m e n t s w h i c h  f e e l s p l a c e s her son a t  she  risk.  T i n a : I d i d have one l a d y who's n o t a h u n d r e d p e r c e n t q u a l i f i e d l o o k i n g a f t e r [ B e n ] . . . . She was b e t t e r t h a n n o t h i n g and u n f o r t u n a t e l y ... i f I want t h e b r e a k t h a t I n e e d I h a v e t o j e o p a r d i z e my s o n i n o r d e r t o h a v e t h a t w h i c h i s r e a l l y t o o bad ( S 8 T 1 P 3 L 4 5 - 5 1 ) . S i m i l a r l y , g i v e n t h e amount o f n u r s i n g r e s p i t e c a r e w h i c h she and h e r son w e r e a l l o t t e d , T i n a comments on d e c i s i o n t o e n r o l l Ben  i n a c h i l d care s i t u a t i o n which  f e e l s t h r e a t e n s h i s h e a l t h : "They've l e f t me I want t h e b r e a k and Ben  she  no c h o i c e , i f  I want t o s t a y h e a l t h y t o t a k e c a r e  I have t o p u t h i m  safe."  her  i n an e n v i r o n m e n t where he's  of  not  (S8T1P8L9-12)  Tina expresses  a philosophy  on p a r e n t i n g w h i c h  suggests the p o t e n t i a l f o r nursing r e s p i t e t o  provide  p a r e n t s w i t h more t h a n a b r e a k f r o m c a r e g i v i n g , and  then  c o n t r a s t s t h i s w i t h the r e a l i t y of f i n d i n g c h i l d care f o r a c h i l d who  has  a m e d i c a l l y complex c o n d i t i o n .  T i n a : K i d s change y o u r l i f e , l i k e w h e n e v e r y o u h a v e a c h i l d you know, d o n ' t e x p e c t , you know, t o be a b l e t o do t h i s and t h i s and t h i s and t h i s , a f t e r you h a v e c h i l d r e n , um, t h a t ' s t r u e . B u t I d o n ' t t h i n k t h a t p a r e n t s t h a t have c h i l d r e n l i k e I h a v e , um, s h o u l d have t o g i v e e v e r y t h i n g up, t h e y s h o u l d s t i l l be a l l o w e d t o w o r k ... t h e y s h o u l d be a b l e t o have somebody, l i k e I w o u l d n ' t s e n d my n o r m a l c h i l d t o a  55  d a y c a r e t h a t I d i d n * t f e e l c o m f o r t a b l e w i t h ... b u t I have t o send my son w i t h a l l h i s s p e c i a l needs t o a d a y c a r e t h a t I d o n ' t f e e l c o m f o r t a b l e a b o u t .... I t h i n k t h a t t h e r e s h o u l d be more ( c h i l d c a r e o p t i o n s ) f o r k i d s l i k e [ B e n ] . . . . Make s u r e t h e s e k i d s a r e t a k e n c a r e o f because i f t h e y ' r e not taken c a r e o f the p a r e n t s a r e n o t t a k e n c a r e o f and y o u ' r e g o i n g t o end up w i t h a whole bunch o f t h e s e l i t t l e k i d s somewhere on y o u r d o o r s t e p (S8T1P29L33-P30L2). Tina p r e d i c t s that without p a r e n t a l e x h a u s t i o n may  adequate c h i l d  care,  e v e n t u a l l y overcome p a r e n t a l d e s i r e  t o c a r e f o r c h i l d r e n w i t h m e d i c a l l y complex c o n d i t i o n s a t home.  L i s a D a r w i n s u p p o r t s t h i s p r e d i c t i o n by s t a t i n g t h a t  i n t h e a b s e n c e o f in-home n u r s i n g r e s p i t e c a r e , she w o u l d p u r s u e weekend r e s p i t e a t a c h i l d r e n ' s h o s p i t a l d e s p i t e h e r awareness t h a t s u c h c a r e would be more  expensive.  L i s a : I t ' s p r e t t y c r a z y t h a t t h e government d o e s n ' t r e a l i z e t h a t l i k e h e r e we a r e . T h e r e a r e a l o t o f f a m i l i e s o u t t h e r e t h a t a r e t r y i n g t o keep t h e i r d i s a b l e d c h i l d r e n a t home and c a r e f o r them t h e m s e l v e s e x c e p t f o r t h e odd h o u r s t h a t a n u r s e c a n come i n and h e l p them s o t h e y c a n r e s t and t h e government c a n ' t seem t o u n d e r s t a n d ... i t ' s c h e a p e r (S5T2P13L36-43).  Furthermore,  w h i l e a p p l y i n g f o r more n u r s i n g r e s p i t e  Lisa states,  " i f I don't  will and  hours,  get t h o s e e x t r a e i g h t hours t h e r e  come a t i m e when I won't be a b l e t o c a r e f o r m y s e l f I won't be a b l e t o c a r e f o r him"  implies that i f current situational innovation strategies w i l l  result  w h i c h compromises b o t h h e r own child.  (S5T2P33L48-50). factors persist,  i n a c h i l d care  needs and  those of  Lisa future  situation her  56  Given the encompassing nature responsibilities is  interesting  of t h e i r  i n the absence of adequate c h i l d c a r e , i t  t o n o t e t h a t b o t h T i n a Emery and  d e s c r i b e t h e i r l i v e s b e i n g on h o l d . r e a l l y had  a life  the following  caregivihg  s i n c e he's  Lisa  L i s a s t a t e s "1  Darwin haven't  come home" ( S 5 T 1 P 4 L 5 4 - 5 5 ) .  q u o t a t i o n , T i n a echoes t h i s  In  sentiment.  T i n a : I t w o u l d be g r e a t i f I c o u l d go o u t and g e t a p a r t t i m e j o b , i t w o u l d be g r e a t , i t w o u l d be g r e a t t h e r a p y f o r me, i t w o u l d be good f o r [Ben] b e c a u s e I know when I w o r k e d b e f o r e and I came home I was just s o g l a d t o s e e h i m and I d i d n ' t m i n d , you know, d o i n g t h i s and d o i n g t h a t and, um, R: You had a b i t o f a b r e a k . T i n a : I had a l i f e ( e m p h a s i s added) ( S 8 T 1 P 1 9 L 2 - 1 1 ) . Inadequate access t o n u r s i n g r e s p i t e  or other  c h i l d care s e v e r e l y l i m i t s the scope of p a r e n t a l strategies. parents  innovation  L i m i t e d c h i l d c a r e hampers t h e a b i l i t y  to provide  other than d i r e c t  of  a safe care environment f o r t h e i r  which simultaneously  persist  forms o f  child  e n a b l e s them t o p u r s u e a c t i v i t i e s  caregiving.  As a r e s u l t ,  parents  i n caring for t h e i r c h i l d , subordinating t h e i r  n e e d s and  s a c r i f i c i n g a l i f e o f t h e i r own.  L i s a p r e d i c t that parental exhaustion  may  Both Tina  If this  h a p p e n s , t h e y w i l l be f o r c e d t o c o n s i d e r c h i l d c a f e  w h i c h may  be more c o s t l y  and  forms o f p u b l i c l y  other  needs,  t o s o c i e t y than nursing funded c h i l d  and  eventually  p r e v e n t them from c a r i n g f o r t h e i r c h i l d r e n .  w h i c h t h e y f e e l compromise t h e i r c h i l d ' s  own  care.  options  options respite  57  Summary To r e i t e r a t e , t h e t e r m p e r p e t u a l i n n o v a t i o n  describes  t h e o n g o i n g m o d i f i c a t i o n s t h a t p a r e n t s make i n a r r a n g i n g c h i l d c a r e f o r c h i l d r e n w i t h m e d i c a l l y complex c o n d i t i o n s when n u r s i n g r e s p i t e c a r e i s an o p t i o n .  This term  the c o n t i n u a l c r e a t i v i t y with which parents  captures  approach  the  challenge of p r o v i d i n g a s a f e c h i l d care environment f o r t h e i r c h i l d , w h i l e e n a b l i n g them t o f u l f i l l responsibilities.  other r o l e s  P e r p e t u a l i n n o v a t i o n by p a r e n t s  i n f l u e n c e d by s i t u a t i o n a l f a c t o r s r e l a t i n g t o t h e parents, nurses. sources  is child,  N u r s i n g R e s p i t e Program o p e r a t i o n s ,  of c h i l d care other than nursing r e s p i t e .  f a c t o r s i n f l u e n c e the frequency, of parent  and  and  These  i n t e n t i o n a l i t y , and  extent  innovations.  S t r a t e g i e s u s e d by p a r e n t s  engaged i n p e r p e t u a l  innovation include p r i o r i t i z i n g desired parental a c t i v i t i e s , e s t i m a t i n g t h e adequacy of n u r s i n g r e s p i t e h o u r s t o meet p a r e n t s *  p e r c e i v e d c h i l d c a r e needs, weighing  t h e advantages o f n u r s i n g r e s p i t e c a r e w i t h o t h e r forms o f c a r e , and  coalescing s i t u a t i o n a l factors t o optimize  c h i l d care s i t u a t i o n . decision-making  process  p l a n and r e - p l a n c h i l d  Together, these  the  strategies outline a  through which parents c o n t i n u a l l y care.  I f these s t r a t e g i e s are s u c c e s s f u l , parents  utilize  n u r s i n g r e s p i t e c a r e i n a manner t h a t b e n e f i t s b o t h  the  58  c h i l d and t h e m s e l v e s .  I f u n s u c c e s s f u l , t h e needs o f t h e  p a r e n t s , c h i l d , o r both a r e compromised.  The c h i l d ' s  a r e c o m p r o m i s e d when he o r she i s p l a c e d i n a c h i l d  needs  care  s i t u a t i o n w h i c h may p o t e n t i a l l y t h r e a t e n h i s o r h e r w e l l being.  Parents  needs may be c o m p r o m i s e d t o a p o i n t w h e r e  t h e y no l o n g e r f e e l t h a t t h e y have a l i f e o f t h e i r In Chapter 4,  study  f i n d i n g s on p e r p e t u a l  own.  innovation  are discussed w i t h i n the context of s e l e c t e d l i t e r a t u r e . My r e v i e w o f l i t e r a t u r e t o d a t e i n d i c a t e s t h a t t h e decision-making  process  r e l a t i v e l y unexplored.  r e f l e c t e d i n these  findings i s  S i n c e few r e s e a r c h  articles  r e l a t i n g t o t h i s decision-making  process  f o l l o w i n g d i s c u s s i o n e m p h a s i z e s how s t u d y  were found, t h e findings link  w i t h c u r r e n t k n o w l e d g e on c h i l d c a r e , r e s p i t e c a r e , parenting children with chronic conditions.  and  59  Chapter  4  Discussion The  a n a l y s i s d e s c r i b e d i n Chapter  3 suggests t h a t  p a r e n t s who h a v e c h i l d r e n w i t h m e d i c a l l y c o m p l e x c o n d i t i o n s choose t o u t i l i z e n u r s i n g r e s p i t e c a r e through a d e c i s i o n making p r o c e s s which c o n s i d e r s dynamic s i t u a t i o n a l  factors.  This process i s captured i n t h e term, p e r p e t u a l i n n o v a t i o n . The  f o l l o w i n g p r e l i m i n a r y f i n d i n g s p r o v i d e c o n c e p t u a l Cues  w h i c h may be u s e d t o i n t e g r a t e t h i s a n a l y s i s i n t o t h e broader theory being generated 1. Due t o c h a n g i n g ongoing 2.  i n t h e e v a l u a t i o n study:  s i t u a t i o n a l f a c t o r s , p a r e n t s make  i n n o v a t i o n s i n t h e i r c h i l d c a r e arrangements. Parents u t i l i z e nursing r e s p i t e care i n  c o n j u n c t i o n w i t h o t h e r c h i l d c a r e arrangements. 3.  The n u r s e ' s p r o f e s s i o n a l k n o w l e d g e , s k i l l , a n d  a b i l i t y t o handle a medical c r i s i s a r e unique c a r e g i v e r a t t r i b u t e s w h i c h p a r e n t s c o n s i d e r when p l a n n i n g c h i l d c a r e . 4.  Some p a r e n t s b e l i e v e t h a t N u r s i n g R e s p i t e P r o g r a m  e l i g i b i l i t y requirements  do n o t r e f l e c t t h e c h i l d ' s  care  needs o r t h e p a r e n t ' s c a r e g i v i n g demands. 5.  S i n c e t h e i r c h i l d may be d i s c h a r g e d f r o m t h e  p r o g r a m a t a n y t i m e , p a r e n t s who want t o w o r k , a t t e n d s c h o o l , o r make o t h e r l o n g - t e r m commitments f o r w h i c h  they  need c h i l d c a r e a r e u n a b l e t o c o u n t o n n u r s i n g r e s p i t e f o r care.  60  6.  P a r e n t s who  inadequate  f e e l t h a t they are  receiving  n u r s i n g r e s p i t e c a r e h o u r s may  be u n s u r e  of  o t h e r c h i l d c a r e o p t i o n s a v a i l a b l e t o them. 7.  P a r e n t s want t o s c h e d u l e n u r s i n g r e s p i t e c a r e a t  t h e i r convenience. s t a f f and needs  N u r s i n g agencies which p r o v i d e adequate  f l e x i b l e s c h e d u l i n g on s h o r t n o t i c e meet p a r e n t a l  better. 8.  The  a v a i l a b i l i t y of other c h i l d care options  i n f l u e n c e s how 9.  While  parents u t i l i z e nursing r e s p i t e care. general respite care i s often described i n  t h e l i t e r a t u r e as a t e m p o r a r y  relief  from  caregiving  r e s p o n s i b i l i t i e s , parents i d e n t i f y q u a l i t a t i v e i n t h e i r u s e o f r e s p i t e t i m e . F o r example, t i m e q u a l i t a t i v e l y d i f f e r e n t than time spent w i t h 10.  differences for self i s  spouse.  Parents i d e n t i f y q u a l i t a t i v e d i f f e r e n c e s i n t h e i r  t i m e away when t h e i r c h i l d ' s c a r e g i v e r i s a n u r s e v e r s u s c a r e g i v e r who  i s not a  nurse.  Emerging from t h e s e f i n d i n g s  i s a framework d e s c r i b i n g  t h e d e c i s i o n - m a k i n g p r o c e s s o f p a r e n t s who pediatric nursing respite care.  r e s p i t e c a r e s u c h as r i g i d p r o g r a m  Cohen & Warren, 1985;  B e t z , 1992;  Upshur, 1982).  issues i n  and  variations  (Ahmann, 1986;  Cohen,  O'Connor, V a n d e r P l a a t s , Study  to  eligibility  inadequate c a r e g i v e r s k i l l s ,  i n models o f r e s p i t e c a r e d e l i v e r y 1982;  have a c c e s s  As d i s c u s s e d e a r l i e r ,  r e s p i t e c a f e l i t e r a t u r e t o date i d e n t i f i e s  requirements,  a  &  findings described i n  61  t h i s report  contribute  t o t h i s body o f l i t e r a t u r e i n t h r e e  ways. F i r s t , w h i l e the  general respite care l i t e r a t u r e  i d e n t i f i e s what c u r r e n t  issues  i n r e s p i t e c a r e need  a t t e n t i o n by p r o g r a m p l a n n e r s and b e g i n s t o i l l u m i n a t e how decisions  made by  services.  researchers, t h i s study  these issues  influence  i n d i v i d u a l s seeking r e s p i t e  Second, t h e s e f i n d i n g s c o n t r i b u t e  body o f k n o w l e d g e on U n d e r s t a n d i n g how  care t o the  in-home n u r s i n g r e s p i t e  r e c i p i e n t s use  caregiving  limited  care.  t h i s s p e c i f i c type  of  r e s p i t e c a r e i n r e l a t i o n t o o t h e r forms o f c a r e w i l l f a c i l i t a t e t h e p l a n n i n g and care services Third,  d e l i v e r y of a range of  r e s p o n s i v e t o t h e needs o f  these findings  s p e c i f i c t o two  recipients.  highlight respite care  populations:  individuals with medically  (a) c h i l d r e n and  complex c o n d i t i o n s .  issues (b) Findings  i n d i c a t e t h a t a t t r i b u t e s u n i q u e t o c h i l d r e n as w e l l those unique t o i n d i v i d u a l s with m e d i c a l l y conditions  influence  arranging respite  respite  as  complex  the decision-making process of  parents  care.  C h i l d Care While conceptual differences care (nursing  o r n o n - n u r s i n g ) and  provide parents with the  between p e d i a t r i c  respite  c h i l d care e x i s t , both  a b i l i t y t o engage i n a c t i v i t i e s  other than d i r e c t care f o r t h e i r c h i l d .  The  importance  of  e x a m i n i n g p e d i a t r i c n u r s i n g r e s p i t e c a r e as a f o r m o f c h i l d  62  care i s supported the  by Thompson's  (1993) work, w h i c h e x p l o r e s  p r o c e s s t h r o u g h w h i c h w o r k i n g mothers make c h i l d  care  d e c i s i o n s when a n o r m a l l y h e a l t h y c h i l d becomes t o o i l l attend  daycare.  U s i n g a p r e t e s t e d i n t e r v i e w s c h e d u l e , Thompson asked  to  (1993)  20 employed mothers t o d e s c r i b e a r e c e n t i n c i d e n t i n  w h i c h t h e i r c h i l d r e n were t o o i l l Questions  probed  disadvantages  informants  t o attend  daycare.  a b o u t a d v a n t a g e s and  o f o t h e r c h i l d c a r e o p t i o n s , and t h e mother's  p r e f e r e n c e s about a l t e r n a t i v e c h i l d c a r e arrangements. A n a l y s i s r e v e a l e d t h a t mothers c o n s i d e r a v a r i e t y o f situational illness,  factors including severity of the c h i l d ' s  r e l a t i v e p r o s and c o n s o f a v a i l a b l e o p t i o n s , and  t h e mother's j o b f l e x i b i l i t y .  Thompson t h e n p r e s e n t s a  model o u t l i n i n g t h e d e c i s i o n - m a k i n g t o arrange  c h i l d care f o r t h e i r s i c k  p r o c e s s used child.  Despite the d i f f e r e n t units of analysis versus parents), r e s u l t s  indicate a striking  between t h e d e c i s i o n - m a k i n g (1993),  dilemmas, p a r e n t s  (mothers similarity  p r o c e s s p r e s e n t e d by Thompson  and t h e d e c i s i o n - m a k i n g  perpetual innovation.  by mothers  process d e s c r i b i n g  F o r example, when s o l v i n g c h i l d  i n b o t h s t u d i e s c o n s i d e r (a) t h e  a v a i l a b i l i t y o f c a r e g i v e r s competent t o c a r e f o r t h e i r "sick"  (Thompson) c h i l d ,  (b) t h e n a t u r e o f t h e c h i l d ' s  c o n d i t i o n and need f o r m e d i c a l management, c o n g r u e n c e between t h e a b i l i t i e s  (c) t h e  of d i f f e r e n t  potential  )  care  63  c a r e g i v e r s and t h e c h i l d ' s c a r e n e e d s , a d v a n t a g e s and d i s a d v a n t a g e s the importance  and  f o r which c h i l d  (d) t h e p e r c e i v e d  of d i f f e r e n t care options,  f l e x i b i l i t y of the parenting  activity  c a r e i s r e q u i r e d , ( f ) outcomes o f  c h i l d c a r e d e c i s i o n s i n s i m i l a r s i t u a t i o n s , and r e l a t i v e importance  (e)  prior  (g) t h e  o f t h e s e outcomes f o r t h e c h i l d  and  parent. Thompson's w h i c h my  (1993) model a l s o a d d r e s s e s  to  f i n d i n g s a l l u d e , b u t w h i c h have n o t been  developed.  These f a c t o r s  include the a b i l i t y of  c a r e g i v e r s t o meet t h e c h i l d ' s e m o t i o n a l t h e economic impact their  factors  importance  needs, as w e l l as  of each c h i l d c a r e o p t i o n .  i n Thompson's s t u d y ,  t h e o r e t i c a l sampling  potential  I may  In view of  direct future  t o explore these issues f o r p o s s i b l e  i n c l u s i o n i n t h i s emerging decision-making  framework.  Parenting Children with Chronic Conditions Although  t h e r e appears  t o be no  literature  s p e c i f i c a l l y d e s c r i b i n g decision-making  processes  of  p a r e n t s u t i l i z i n g r e s p i t e o r o t h e r forms o f c h i l d c a r e f o r c h i l d r e n w i t h m e d i c a l l y complex o r o t h e r c h r o n i c conditions,  i w o u l d l i k e t o p l a c e my  study  findings within  t h e c o n t e x t o f r e s e a r c h on p a r e n t i n g s u c h c h i l d r e n . described e a r l i e r  As  (pp. 13-14), K n a f l and D e a t r i c k (1987)  developed  a framework f o r o r g a n i z i n g r e s e a r c h on " f a m i l y "  responses  to a child's chronic condition.  Study  findings  on p e r p e t u a l i n n o v a t i o n f i t i n t h e framework c a t e g o r y  64  d e s c r i b i n g t h e s u b j e c t i v e / a c t i v e / p r o c e s s approach  (SAPA) o f  study.  which  Perpetual i n n o v a t i o n , t h e process through  parents arrange c h i l d care f o r c h i l d r e n with m e d i c a l l y complex c o n d i t i o n s , r e l a t e s t o c u r r e n t r e s e a r c h o n p a r e n t management b e h a v i o r s chronicity.  i n t h e presence  of pediatric  K n a f l and D e a t r i c k (1990) p r e s e n t a model  c o n c e p t u a l i z i n g f a m i l y management s t y l e , and e x p l i c a t e a component o f t h e model w h i c h t h e y c a l l management (Deatrick & Knafl,  behaviors  1990).  Grounded i n s y m b o l i c  i h t e r a c t i o n i s m , the Family  Management S t y l e model i n c o r p o r a t e s (a) t h e f a m i l y ' s d e f i n i t i o n of the experience of l i v i n g with a c h i l d with a c h r o n i c c o n d i t i o n , (b) management b e h a v i o r s r e l a t e d t o l i v i n g w i t h a c h i l d w i t h a c h r o n i c c o n d i t i o n , and ( c ) s o c i o c u l t u r a l context  ( K n a f l & D e a t r i c k , 1990).  The model  d e s c r i b e s t h e " f a m i l y " p e r s p e c t i v e on management s t y l e s i n terms o f averaged  individual perspectives.  Within  this  model, management b e h a v i o r s a r e e x p l i c a t e d i n t e r m s o f t h e following defining attributes: behavior, person  (b) i t s u n d e r l y i n g c o n c e p t u a l d i m e n s i o n ,  implementing  behavior  (a) t h e g o a l o f t h e  t h e b e h a v i o r , and (d) t h e f o c u s o f t h e  (Deatrick & Knafl,  1990).  D e a t r i c k and K n a f l (1990) d e v e l o p e d management b e h a v i o r s t h r o u g h F o r example, t h e y  (c) the  the concept o f  a r e v i e w o f SAPA r e s e a r c h .  i n c o r p o r a t e d (a) K r u l i k ' s  (1980) work on  n o r m a l i z i n g t a c t i c s u s e d by p a r e n t s t o m i n i m i z e  perceived  65  d i f f e r e n c e s between t h e i r c h i l d peers,  and o t h e r  siblings or  (b) A n d e r s o n ' s (1981) work on f a m i l y  lifestyle  a d j u s t m e n t s when a f a m i l y member has a c h r o n i c and  (c) D e a t r i c k ,  K n a f l , and Walsh's  (1988) work on  a d j u s t m e n t s made by f a m i l i e s t o accommodate chronic  condition  into daily l i f e .  seems p l a u s i b l e t h a t p e r p e t u a l  condition,  a child's  G i v e n t h e s e examples, i t  innovation  s t r a t e g i e s may  be  u n d e r s t o o d as management b e h a v i o r s u s e d by p a r e n t s o f children with medically care  complex c o n d i t i o n s  b e n e f i t i n g b o t h p a r e n t and c h i l d .  The  i n t e r a c t i o n i s t underpinnings o f both the innovation  s t u d y and K n a f l and D e a t r i c k ' s  management s t y l e model l e n d s  t o arrange  child  symbolic  perpetual (1990) f a m i l y  f u r t h e r credence t o t h i s  suggestion. Comprehensive R e s p i t e Having placed t h e o r e t i c a l context  Care D e l i v e r y  the concept of perpetual  innovation i n  with l i t e r a t u r e related t o  parenting  children with chronic conditions, t h i s section  addresses  pragmatic use of study f i n d i n g s r e l a t e d t o r e s p i t e delivery.  care  On b o t h l o c a l and n a t i o n a l l e v e l s , p r o j e c t s a r e  c u r r e n t l y underway t o examine ways t o r e s t r u c t u r e t h e delivery of p e d i a t r i c respite care nursing  r e s p i t e care,  t h e i r parents.  services, including  t o b e t t e r serve  b o t h c h i l d r e n and  P r i o r t o d i s c u s s i n g t h e i r recommendations,  I w i l l b r i e f l y describe  these p r o j e c t s .  66  L o c a l l y , a task force i n Greater V i c t o r i a r e c e n t l y conducted support  a r e v i e w o f f a m i l y - c e n t e r e d community-based  s e r v i c e s , i n c l u d i n g t h e N u r s i n g R e s p i t e Program,  for families caring f o r children with physical or developmental  "disabilities"  C a r e P r o j e c t , 1993). surveys  a t home  (Community  The V i c t o r i a t a s k f o r c e  Respite  conducted  and i n t e r v i e w s w i t h f o u r groups o f s t a k e h o l d e r s ,  including  families,  family-serving agencies,  government  r e p r e s e n t a t i v e s , and t h e g e n e r a l community, o n t o p i c s r e l a t e d t o p e d i a t r i c r e s p i t e c a r e s e r v i c e d e l i v e r y and utilization  i n Greater V i c t o r i a .  F i n d i n g s from  p r o j e c t a r e l i m i t e d by t h e instruments survey data. instruments informants  this  used t o c o l l e c t t h e  D e v e l o p e d by t h e t a s k f o r c e , were n o t p i l o t t e s t e d , and  these  subsequently  r e p o r t e d t h a t some q u e s t i o n s were u n c l e a r  (Community R e s p i t e C a r e P r o j e c t , 1993). N a t i o n a l l y , t h e Canadian I n s t i t u t e o f C h i l d  Health,  the Canadian P e d i a t r i c S o c i e t y , t h e Canadian P u b l i c Health A s s o c i a t i o n , and Home S u p p o r t  Canada have j u s t  completed  p h a s e one o f a t h r e e p h a s e c o l l a b o r a t i v e p r o j e c t i n t e n d e d t o respond  t o t h e home-based c a r e needs o f c h i l d r e n  " m e d i c a l l y f r a g i l e " c o n d i t i o n s and t h e i r f a m i l i e s Support identify  Canada, 1995).  (Home  P r o j e c t Phase One s o u g h t t o  (a) c u r r e n t sources  these c h i l d r e n ,  with  o f in-home p e d i a t r i c c a r e f o r  (b) p e r c e i v e d gaps i n s e r v i c e s o r o b s t a c l e s  p a r e n t s c o n f r o n t when a c c e s s i n g s e r v i c e s ,  (c) strategies t o  67  improve these s e r v i c e s . of  D a t a were c o l l e c t e d f r o m  parents  c h i l d r e n w i t h m e d i c a l l y f r a g i l e c o n d i t i o n s as w e l l as  other key informants, u s i n g mailed surveys,  telephone  i n t e r v i e w s , and t a r g e t e d i n t e r v i e w s . Both p r o j e c t s i d e n t i f y t h e need f o r g r e a t e r c o o r d i n a t i o n among r e s p i t e c a r e o p t i o n s , g r e a t e r flexibility  i n t h e d e l i v e r y o f r e s p i t e c a r e , as w e l l as  e a s i e r access t o a range o f r e s p i t e c a r e o p t i o n s . I n a d d i t i o n , b o t h s t u d i e s recommend a s i n g l e p o i n t o f e n t r y i n t o t h e system respite care  f r o m w h i c h p a r e n t s may a c c e s s a r a n g e o f  services.  These recommendations suggest an i m p l i c i t v a l u e  which  p r o m o t e s p a r e n t a l e a s e and i n d e p e n d e n c e i n a c c e s s i n g a n d utilizing  respite care services.  W h i l e my s t u d y f o c u s e s o n  n u r s i n g r e s p i t e c a r e , t h e manner i n w h i c h  some s t u d y  p a r e n t s were a b l e t o u t i l i z e t h i s p r o f e s s i o n a l c a r e i n conjunction w i t h other c h i l d care options suggests t h a t c o o r d i n a t e d a c c e s s t o a r a n g e o f r e s p i t e c a r e o p t i o n s may f a c i l i t a t e the process o f perpetual innovation. O f f e r i n g parents a range o f comprehensive r e s p i t e c a r e s e r v i c e s would e n a b l e them t o match r e s p i t e c a r e s e r v i c e s t o t h e i r s p e c i f i c c h i l d c a r e needs.  I n response t o changing  s i t u a t i o n a l factors i n f l u e n c i n g t h e i r c h i l d care d e c i s i o n s , p a r e n t s c o u l d weigh t h e advantages and disadvantages o f d i f f e r e n t r e s p i t e o p t i o n s and choose t h e t y p e o f r e s p i t e c a r e which b e n e f i t s b o t h p a r e n t and c h i l d .  68  Summary Due t o t h e p a u c i t y o f r e l a t e d l i t e r a t u r e , i t i s d i f f i c u l t t o locate study f i n d i n g s w i t h i n e x i s t i n g bodies of research.  Nonetheless, t h i s discussion describes  findings w i t h i n the context of research r e s p i t e c a r e , and p a r e n t i n g conditions.  children with  care,  chronic  F u r t h e r m o r e , i t a d d r e s s e s how s t u d y  p r o v i d i n g t h e emic p e r s p e c t i v e decisions  on c h i l d  regarding  may  study  findings  influence policy  p e d i a t r i c respite care delivery.  A d d i t i o n a l d a t a c o l l e c t i o n and a n a l y s i s w i t h i n t h e c o n t e x t of the l a r g e r evaluation to elaborate  study w i l l provide  an  on t h e s e f i n d i n g s , t o i n t e g r a t e them i n t o t h e  l a r g e r s t u d y , and t o c o n t r i b u t e t o t h e s c a r c e c h i l d c a r e d e c i s i o n s o f p a r e n t s who medically  opportunity  complex  conditions.  literature  have c h i l d r e n  with  on  69  Chapter  5  Implications Study f i n d i n g s presented i n t h i s t h e s i s d e s c r i b e t h e phenomenon o f p e r p e t u a l i n n o v a t i o n , namely t h e  ongoing  modifications that parents arranging c h i l d care f o r c h i l d r e n w i t h m e d i c a l l y c o m p l e x c o n d i t i o n s make when n u r s i n g r e s p i t e c a r e i s an o p t i o n .  A decisionT-making  f r a m e w o r k w h i c h d e s c r i b e s t h i s p r o c e s s has i m p l i c a t i o n s f o r the d e l i v e r y of nursing r e s p i t e care services f o r c h i l d r e n w i t h m e d i c a l l y c o m p l e x c o n d i t i o n s and p o s s i b l y o t h e r f o r m s of c h i l d care services. acknowledging  I describe these  implications  t h a t t h i s d e c i s i o n - m a k i n g framework i s  t e n t a t i v e , w i l l u n d e r g o r e f i n e m e n t and v a l i d a t i o n  within  t h e l a r g e r e v a l u a t i o n s t u d y , and r e f l e c t s p a r e n t d e c i s i o n s r e g a r d i n g a s p e c i f i c r e s p i t e c a r e model i n v o l v i n g n u r s e s . F i r s t , t h i s d e c i s i o n - m a k i n g f r a m e w o r k may e d u c a t e n u r s e s who  be u s e d t o  p r o v i d e d i r e c t p e d i a t r i c in-home n u r s i n g  r e s p i t e c a r e about the process through which parents choose to u t i l i z e nursing respite care.  This understanding  s e n s i t i z e nurses t o the broader context i n which  will  they  provide c a r e . Although nurses care f o r the c h i l d , t h i s i s p r o v i d e d t o e n a b l e p a r e n t s to than d i r e c t care of t h e i r c h i l d .  f u l f i l l activities  care  other  A p p r e c i a t i n g t h e manner  i n which parents schedule n u r s i n g r e s p i t e i n r e l a t i o n t o o t h e r c h i l d c a r e may  enable nurses t o enact  c a f e g i v i n g r o l e t o b e t t e r complement p a r e n t  their activities.  70  S e c o n d , t h i s d e c i s i o n - m a k i n g f r a m e w o r k may  be u s e d by  agencies d e l i v e r i n g nursing r e s p i t e care t o provide these s e r v i c e s i n a manner w h i c h b e t t e r r e s p o n d s of p a r e n t s .  t o r e s p i t e needs  F o r example, t h e framework i l l u s t r a t e s t h a t  parents planning nursing r e s p i t e care consider a v a r i e t y of dynamic s i t u a t i o n a l v a r i a b l e s .  Agencies  need t o adopt  s t r a t e g i e s which p r o v i d e parents w i t h the f l e x i b i l i t y utilize  r e s p i t e care i n r e l a t i o n t o these  variables.  Study  changing  f i n d i n g s r e v e a l two a g e n c y  which provide parents w i t h t h i s f l e x i b i l i t y : system,  and  to  strategies (a) a  paging  (b) a d e q u a t e n u r s i n g s t a f f o r i e n t e d t o c a r e f o r  a specific child. T h i r d , i n v i e w o f l o c a l and n a t i o n a l e f f o r t s t o restructure the delivery of a l l p e d i a t r i c respite  care  s e r v i c e s , t h i s framework suggests t h a t u n d e r s t a n d i n g decision-making process through which parents respite care w i l l  the  utilize  a s s i s t p o l i c y m a k e r s and r e s p i t e  care  p r o v i d e r s t o s t r u c t u r e and d e l i v e r t h e s e s e r v i c e s i n a r e s p o n s i v e manner. w o u l d be a d a p t e d  Responsive  d e l i v e r y of r e s p i t e  t o t h e p e r c e i v e d r e s p i t e needs o f  care parents  r a t h e r than e x p e c t i n g parents t o adapt t o i n h e r e n t l i m i t s of c u r r e n t r e s p i t e care  delivery.  Further research i s required to a s s i s t policymakers and r e s p i t e c a r e p r o v i d e r s t o make i n f o r m e d d e c i s i o n s a b o u t r e s t r u c t u r i n g the d e l i v e r y of p e d i a t r i c r e s p i t e services.  P a r e n t s who  utilize  care  pediatric nursing respite  71  c a r e i n d i c a t e t h e need f o r s e r v i c e s f l e x i b l e , and  which are  accessible,  adaptable t o a v a r i e t y of s i t u a t i o n a l factors  influencing t h e i r c h i l d care decisions.  Furthermore,  p a r e n t s d e s c r i b e u s i n g a v a r i e t y o f r e s p i t e c a r e models meet t h e i r c h i l d c a r e n e e d s .  While parents i d e n t i f y  to  how  d i f f e r e n t r e s p i t e c a r e m o d e l s meet t h e i r c h i l d c a r e n e e d s , f u r t h e r r e s e a r c h i s needed t o e x a m i n e how p a r e n t s m i g h t be care  incorporated  t h i s input  t o improve p e d i a t r i c  from respite  services. In a d d i t i o n ,  future  r e s e a r c h needs t o f o c u s on  the  e x t e n t t o w h i c h d i f f e r e n t r e s p i t e c a r e models s e r v e  the  c h i l d c a r e needs o f p a r e n t s who medically  complex c o n d i t i o n s .  have c h i l d r e n  with  Such r e s e a r c h w i l l a s s i s t i n  i d e n t i f y i n g p o s i t i v e a t t r i b u t e s of s p e c i f i c r e s p i t e models, b a r r i e r s f a c e d by p a r e n t s i n a c c e s s i n g c a r e p r o v i d e d d i f f e r e n t m o d e l s , and care delivery.  To  p e r c e i v e d gaps i n p e d i a t r i c  within  respite  augment s u c h f i n d i n g s , r e s e a r c h i s  needed t o compare t h e c o s t s r e s p i t e c a r e models.  and  outcomes o f  While current  different  research supports  the  need f o r c o m m u n i t y - b a s e d p e d i a t r i c r e s p i t e c a r e , i t i s d i f f i c u l t t o determine w h i c h r e s p i t e models p r o v i d e greatest  b e n e f i t t o program r e c i p i e n t s a t the  j u s t i f i a b l e cost. information  Given current  w o u l d be  invaluable  most  fiscal constraints, i n maximizing the  costs.  such  delivery  of p e d i a t r i c r e s p i t e care s e r v i c e s w h i l e minimizing associated  the  the  72  Research  i s a l s o needed t o e x p l o r e how p e d i a t r i c  r e s p i t e c a r e and o t h e r c h i l d c a r e s e r v i c e s a d m i n i s t e r e d by d i f f e r e n t government m i n i s t r i e s a n d community o r g a n i z a t i o n s might be c o o r d i n a t e d t o p r o v i d e p a r e n t s and c h i l d r e n w i t h f l e x i b l e access t o these s e r v i c e s . research could a s s i s t policymakers and n a t i o n a l l e v e l s i n p r o m o t i n g  The r e s u l t s o f s u c h at local,  provincial,  t h e development o f a  c o m p r e h e n s i v e model o f p e d i a t r i c r e s p i t e c a r e  delivery.  Such a model would p r o v i d e p a r e n t s w i t h t h e freedom t o arrange  r e s p i t e o r o t h e r forms o f c h i l d c a r e i n response t o  dynamic s i t u a t i o n a l f a c t o r s i n f l u e n c i n g t h e i r c h i l d situation.  care  In addition, i t i sconceivable that better  c o o r d i n a t i o n o f p e d i a t r i c r e s p i t e care s e r v i c e s might streamline a d m i n i s t r a t i o n , thereby decreasing o v e r a l l  costs  of p e d i a t r i c r e s p i t e care. Conclusion P e d i a t r i c home c a r e f o r c h i l d r e n w i t h m e d i c a l l y complex c o n d i t i o n s i s a growing  phenomenon made p o s s i b l e b y  parents w i l l i n g and a b l e t o c a r e f o r these c h i l d r e n a t home.  Y e t t h e d e a r t h o f n u r s i n g r e s p i t e and o t h e r forms o f  c h i l d care a v a i l a b l e t o these parents i s w e l l  documented.  W i t h a n i n c r e a s i n g e m p h a s i s o n community h e a l t h c a r e a n d f i s c a l r e s t r a i n t i n B r i t i s h C o l u m b i a , community-based p e d i a t r i c r e s p i t e c a r e may p o t e n t i a l l y r e p r e s e n t a c o s t e f f e c t i v e s e r v i c e t o f a m i l i e s who have c h i l d r e n w i t h m e d i c a l l y complex c o n d i t i o n s .  However, f i n a n c i a l b e n e f i t s  73  t o t h e p r o v i n c e may  come a t a h i g h c o s t t o p a r e n t s  i n v e s t i n g c o n s i d e r a b l e t i m e and e n e r g y c a r i n g f o r t h e s e children. This study begins theory generation i n a  relatively  unexplored area; the decision-making process through  which  p a r e n t s c h o o s e t o u t i l i z e n u r s i n g r e s p i t e as a f o r m o f c h i l d c a r e , a p r o c e s s c a p t u r e d by t h e t e r m p e r p e t u a l innovation.  The  s i g n i f i c a n c e of understanding perpetual  i n n o v a t i o n , the ongoing m o d i f i c a t i o n s through which  parents  o f c h i l d r e n w i t h m e d i c a l l y complex c o n d i t i o n s arrange care, i s potentially far-reaching.  child  Health care providers  have a r e s p o n s i b i l i t y t o ensure t h r o u g h r e s e a r c h t h a t programs d e s i g n e d t o a s s i s t t h e s e p a r e n t s i n t h e i r c a r e g i v i n g r e s p o n s i b i l i t i e s are adequate.  By  understanding  the process through which parents arrange c h i l d c a f e f o r t h e s e c h i l d r e n , n u r s e s and o t h e r s i n v o l v e d i n p l a n n i n g and d e l i v e r i n g r e s p i t e and o t h e r c h i l d c a r e s e r v i c e s may  create  s e r v i c e s which enable parents t o achieve personal g o a l s , w h i l e a s s u r i n g a s a f e care environment f o r t h e i r  child.  74  References Ahmann, E . ( 1 9 8 6 ) . An a n n o t a t e d b i b l i o g r a p h y on r e s p i t e c a r e f o r c h i l d r e n and f a m i l i e s . Children's Health C a r e . 17. 112-120. A n d e r s o n , J . M. ( 1 9 8 1 ) . T h e s o c i a l c o n s t r u c t i o n o f t h e i l l n e s s experience: Families with a chronically i l l c h i l d . J o u r n a l o f Advanced N u r s i n g . 6 j 427-434. A n d e r s o n , J . M. & E l f e r t , ( 1 9 8 9 ) . Managing c h r o n i c i l l n e s s i n t h e f a m i l y : Women a s c a r e t a k e r s . J o u r n a l o f Advanced N u r s i n g . 14, 735-743. B e r n s , R. M- ( 1 9 9 3 ) . C h i l d , f a m i l y , community: S o c i a l i z a t i o n and s u p p o r t . O r l a n d o , F L : H o l t , R i n e h a r t , and W i n s t o n . Blumer, H. ( 1 9 6 9 ) . Symbolic C l i f f s , NJ: P r e n t i c e - H a l l .  interaction.  Englewood  B r i t i s h C o l u m b i a M i n i s t r y o f H e a l t h and M i n i s t r y R e s p o n s i b l e f o r S e n i o r s (1992). The N u r s i n g R e s p i t e Program g u i d e l i n e s f o r f a m i l i e s . V i c t o r i a : A u t h o r . Canam, C. ( 1 9 9 3 ) . Common a d a p t i v e t a s k s f a c i n g parents of c h i l d r e n with chronic conditions. Journal of Advanced N u r s i n g . 18. 46-53. C h e n i t z , W. C , and Swanson, J . M. ( E d s . ) . (1986). From p r a c t i c e t o grounded t h e o r y . Menlo P a r k , CA: A d d i s o n Wesley. care.  Cohen, S. ( 1 9 8 2 ) . Supporting f a m i l i e s through R e h a b i l i t a t i o n L i t e r a t u r e . 43, 7-11.  respite  Cohen, S., & P i n n i c k , N. J . ( 1 9 8 9 ) . Home c a r e o f c h i l d r e n . I n I . M a r t i n s o n , & A. Widmer ( E d s . ) , Home h e a l t h c a r e ( p p . 183-199). P h i l a d e l p h i a : S a u n d e r s . Cohen, S., & Warren, R. ( 1 9 8 5 ) . What r e s e a r c h t e l l s us about r e s p i t e c a r e . I n R e s p i t e c a r e : P r i n c i p l e s , programs, a n d p o l i t i c s ( p p . 39-60). A u s t i n : P r o - E d . Community R e s p i t e C a r e Committee ( 1 9 9 3 ) . Respite care r e v i e w : Toward a dynamic model o f s e r v i c e d e l i v e r y . V i c t o r i a , B.C.: A u t h o r .  75  C r o w l e y , A. A. ( 1 9 9 0 ) . I n t e g r a t i n g h a n d i c a p p e d a n d c h r o n i c a l l y i l l c h i l d r e n i n t o day c a r e c e n t e r s . P e d i a t r i c N u r s i n g . 16 (1) 39-44. D e a t r i c k , J . A. & K n a f l , K. A. ( 1 9 9 0 ) . Management b e h a v i o r s : Day t o d a y a d j u s t m e n t s t o c h i l d h o o d c h r o n i c c o n d i t i o n s . J o u r n a l o f P e d i a t r i c N u r s i n g . 5 ( 1 ) , 15-22. D e a t r i c k , J . A., K n a f l , K. A., & Walsh, M. ( 1 9 8 8 ) . The p r o c e s s o f p a r e n t i n g a c h i l d w i t h a d i s a b i l i t y : N o r m a l i z a t i o n through accomodations. J o u r n a l o f Advanced N u r s i n g . 13. 15-20. G l a s e r , B. G. ( 1 9 9 2 ) . B a s i c s o f grounded t h e o r y a n a l y s i s : Emergence v s f o r c i n g . M i l l V a l l e y , CA: S o c i o l o g y Press. H a l p e r n , P. L . ( 1 9 8 5 ) . R e s p i t e c a r e and f a m i l y f u n c t i o n i n g i n f a m i l i e s w i t h r e t a r d e d c h i l d r e n . H e a l t h and S o c i a l Work. 10, 138-150. Hayes, V. E . ( 1 9 9 2 ) . The impact o f a c h i l d ' s c h r o n i c c o n d i t i o n on t h e f a m i l y system. Unpublished d o c t o r a l d i s s e r t a t i o n , U n i v e r s i t y o f C a l i f o r n i a , San F r a n c i s c o . H i l d e b r a n d t , E . D. ( 1 9 8 3 ) . Respite care A m e r i c a n J o u r n a l o f N u r s i n g . 83. 1428-1431.  i n t h e home.  Hobbs, H, P e r r i n , J.M., & I r e y s , H.T. ( 1 9 8 5 ) . C h r o n i c a l l y i l l c h i l d r e n a n d t h e i r f a m i l i e s . San F r a n c i s c o : Jossey-Bass. Home S u p p o r t Canada ( 1 9 9 5 ) . Home b a s e d c a r e f o r m e d i c a l l y and p s y c h o l o g i c a l l y f r a g i l e c h i l d r e n : E x e c u t i v e summary. Ottawa: Home S u p p o r t Canada. H u r t , H.> B r o d s k y , N., G e a l t , L . , & Hopper, P. ( 1 9 8 8 ) . Special baby-sitters f o r s p e c i a l babies. PerinatologyN e o n a t o l o g y . 12 ( 2 ) , 32-34. H u t c h i n s o n , S. ( 1 9 8 6 ) . Grounded t h e o r y : T h e method. I n P. L . M u n h a l l , & C. J . O i l e r ( E d s . ) , N u r s i n g r e s e a r c h : A q u a l i t a t i v e p e r s p e c t i v e (pp. 111-130). Norwalk, CT: Appleton-Century-Crofts. K n a f l , K. A., & D e a t r i c k , J . A . ( 1 9 8 7 ) . C o n c e p t u a l i z i n g f a m i l y response t o a c h i l d ' s c h r o n i c i l l n e s s O f d i s a b i l i t y . F a m i l y R e l a t i o n s , 36, 300-304.  76  K n a f l , K. A. & D e a t r i c k , J . A. ( 1 9 9 0 ) . F a m i l y management s t y l e : C o n c e p t a n a l y s i s a n d d e v e l o p m e n t . J o u r n a l o f P e d i a t r i c N u r s i n g , 5 ( 1 ) , 15-22. K r u l i k , T. (1980). S u c c e s s f u l " n o r m a l i z i n g " t a c t i c s o f p a r e n t s o f c h r o n i c a l l y i l l c h i l d r e n , j o u r n a l o f Advanced N u r s i n g , 5_, 573-578. O'Connor, P., V a n d e r P l a a t s , S., & B e t z , C. L . ( 1 9 9 2 ) . Respite care services o f chronically i l l children i n California. J o u r n a l o f P e d i a t r i c N u r s i n g . 7_, 269-275. P l e s s , I . B., & P e r r i n , J . M. ( 1 9 8 5 ) . I s s u e s common to a variety of illnesses. I n N. Hobbs & J . M. P e r r i n (Eds.), Issues i n the care o f c h i l d r e n with c h r o n i c i l l n e s s (pp. 4 1 - 6 0 ) . San F r a n c i s c o : J o s s e y - B a s s . R o b i n s o n , C. ( 1 9 8 5 ) . D o u b l e b i n d : A dilemma f o r p a r e n t s o f c h r o n i c a l l y i l l c h i l d r e n . P e d i a t r i c N u r s i n g , 11., 112-115. Sherman, B. R. ( 1 9 9 5 ) . Impact o f home-based r e s p i t e c a r e on f a m i l i e s o f c h i l d r e n w i t h c h r o n i c i l l n e s s e s . C h i l d r e n ' s H e a l t h C a r e . 24 ( 1 0 ) , 33-45. S t e i n , R. E . K., & J e s s o p , D. J . ( 1 9 8 9 ) . What d i a g n o s i s does n o t t e l l : The c a s e f o r a n o n c a t e g o r i c a l approach t o c h r o n i c i l l n e s s i n c h i l d h o o d . S o c i a l Science i n M e d i c i n e . 29. 769-778. S t r a u s s , A., & C o r b i n , J . (1990). Basics of q u a l i t a t i v e r e s e a r c h : Grounded t h e o r y p r o c e d u r e s a n d t e c h n i q u e s . Newbury P a r k , CA: Sage. S t r a u s s , A., & C o r b i n , J . ( 1 9 9 4 ) . Grounded t h e o r y m e t h o d o l o g y : An o v e r v i e w . I n N. K. D e n z i n & Y. S. L i n c o l n ( E d s . ) , Handbook o f q u a l i t a t i v e r e s e a r c h ( p p . 273-285). Thousand Oaks, CA: Sage. Teague, B. R., F l e m i n g , J . W., C a s t l e , A., K i e r m a n , B. S., Lobo, M. L . , R i g g s , S., & W o l f e , J . G. ( 1 9 9 3 ) . " H i g h ^ t e c h " home c a r e f o r c h i l d r e n w i t h c h r o n i c h e a l t h c o n d i t i o n s : A p i l o t study. Journal o f P e d i a t r i c Nursing. 8_, 226-232. Thomas, R. B. ( 1 9 8 7 ) . M e t h o d o l o g i c a l i s s u e s and problems i n f a m i l y h e a l t h c a r e r e s e a r c h . Journal of M a r r i a g e a n d t h e F a m i l y . 49, 65-70.  77  Thompson, P. J . ( 1 9 9 3 ) . Day c a r e f o r i l l c h i l d r e n : employed mother's dilemma. I s s u e s i n Comprehensive P e d i a t r i c N u r s i n g . 16. 77-89. Upshur, C. C. ( 1 9 8 2 ) . Respite care f o r mentally r e t a r d e d and o t h e r d i s a b l e d p o p u l a t i o n s : Program models and f a m i l y n e e d s . M e n t a l R e t a r d a t i o n , 20, (1) 2-6.  An  78  A p p e n d i x A: L e t t e r t o F a m i l i e s March xx, 1994 Dear Ms & Mr. xxx and F a m i l y : We a r e i n t e r e s t e d i n e v a l u a t i n g t h e e f f e c t i v e n e s s o f t h e BC N u r s i n g R e s p i t e Program, p a r t i c u l a r l y f r o m t h e p o i n t o f v i e w o f t h o s e who r e c e i v e r e s p i t e s e r v i c e s — t h e f a m i l i e s . This e v a l u a t i o n r e s e a r c h i s being c a r r i e d o u t independent o f t h e a d m i n i s t r a t i o n o f t h e Program and t h e M i n i s t r y o f H e a l t h . O n l y f a m i l i e s new t o t h e N u r s i n g R e s p i t e Program t h i s y e a r c a n p a r t i c i p a t e , a n d we would l i k e t o i n c l u d e y o u r f a m i l y . One d i r e c t b e n e f i t t o y o u w i l l be reimbursement o f y o u r t i m e , and i n d i r e c t l y , t h e i n f o r m a t i o n y o u p r o v i d e w i l l h e l p nurses and M i n i s t r y o f H e a l t h p l a n n e r s t o b e t t e r understand what i t i s l i k e t o have a c h i l d who has a complex h e a l t h c o n d i t i o n t h a t r e q u i r e s r e s p i t e s e r v i c e s . Other f a m i l i e s who have p a r t i c i p a t e d i n s i m i l a r r e s e a r c h have r e p o r t e d t h a t i t i s h e l p f u l f o r them t o t h i n k a b o u t t h e e f f e c t s o f the long-term h e a l t h concern i n t h e i r f a m i l i e s . I f y o u a g r e e t o p a r t i c i p a t e , t h i s i s what would be i n v o l v e d : 1) L i n d a F l a t o , an e x p e r i e n c e d n u r s e r e s e a r c h e r , would v i s i t y o u r home t h r e e (3) t i m e s i n o r d e r t o o b s e r v e a n d t a l k w i t h y o u a b o u t what i t i s l i k e f o r y o u r f a m i l y t o need and u s e n u r s i n g r e s p i t e s e r v i c e s : o n c e b e f o r e t h e s e r v i c e s b e g i n , a g a i n s i x (6) months l a t e r , and s i x (6) months a f t e r that. 2) P a r e n t s would c o m p l e t e s e v e n (7) p a p e r - a n d - p e n c i l q u e s t i o n n a i r e s each time. Two o r t h r e e o f t h e s e questionnaires are also available i n shorter children's forms, i f c h i l d r e n wish t o c o n t r i b u t e . 3) Some c o n v e r s a t i o n s may be t a p e - r e c o r d e d and t r a n s c r i b e d l a t e r and L i n d a w o u l d a l s o w r i t e some n o t e s a b o u t h e r o b s e r v a t i o n s about your f a m i l y ' s responses t o n u r s i n g respite care. 4) L i n d a w i l l r e c o r d some i n f o r m a t i o n f r o m y o u r c h i l d ' s in-home r e s p i t e c a r e c h a r t . 5) The t i m i n g o f e a c h 2-4 h o u r v i s i t w o u l d be a r r a n g e d a t your f a m i l y ' s convenience. 6) You w i l l b e a s k e d t o keep a b r i e f r e c o r d o f y o u r e x p e r i e n c e s w i t h t h e N u r s i n g R e s p i t e Program and i t s a s s o c i a t e d c o s t s ( i n d i a r y form). 7) A f t e r each o f t h e t h r e e data c o l l e c t i o n periods i n w h i c h y o u t a k e p a r t , y o u w i l l r e c e i v e f o u r (4) h o u r s e x t r a respite care.  79  Your p a r t i c i p a t i o n i s e n t i r e l y v o l u n t a r y , and y o u c a n w i t h d r a w a t any t i m e . R e f u s i n g t o p a r t i c i p a t e , even i n p a r t , w i l l i n no way a f f e c t t h e c a r e y o u and y o u r f a m i l y receive. You c a n a s k any q u e s t i o n s a b o u t t h e r e s e a r c h a t any t i m e b e f o r e , d u r i n g , o r a f t e r t h e s t u d y . A l l i n f o r m a t i o n w i l l be s t r i c t l y c o n f i d e n t i a l . Thank y o u f o r c o n s i d e r i n g p a r t i c i p a t i o n i n o u r s t u d y . P l e a s e c a l l one o f us i f you have any q u e s t i o n s . I f we d o n ' t h e a r f r o m y o u by two weeks a f t e r y o u r e c e i v e t h i s l e t t e r , L i n d a w i l l g i v e you a c a l l t o o b t a i n y o u r d e c i s i o n . Yours s i n c e r e l y , V i r g i n i a Hayes,RN,PhD Pamela O t t e r m a n , MSN Linda Flato,BSN Nurse C o n s u l t a n t Research A s s i s t a n t A s s i s t a n t P r o f e s s o r 261-3093 822-7477 ( o f f i c e ) 727-6081 (home) ( o f f i c e a t home)  80  Consent /Assent Project T i t l e : Program  A p p e n d i x B: t o P a r t i c i p a t e i n Research P r o j e c t  E v a l u a t i o n o f t h e BC  Nursing  Respite  Purpose: J i n n y Hayes, RN, PhD, f r o m t h e S c h o o l o f N u r s i n g a t 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 and Pamela O t t e r m a n , RN, MSN, a nursing consultant a s s o c i a t e d with the Nursing R e s p i t e Program a r e c o n d u c t i n g a s t u d y t o e v a l u a t e t h e outcomes o f t h e BC M i n i s t r y o f H e a l t h ' s N u r s i n g R e s p i t e Program (NRP) f o r c h i l d r e n w i t h complex h e a l t h c o n d i t i o n s .  Procedures: I f we a g r e e t o p a r t i c i p a t e i n t h e s t u d y , e i t h e r Myra P e r c y o r L i n d a F l a t o (the nurse r e s e a r c h a s s i s t a n t s ) w i l l v i s i t our home t h r e e (3) t i m e s i n o r d e r t o o b s e r v e and t a l k w i t h us a b o u t what i t i s l i k e f o r o u r f a m i l y t o need and use n u r s i n g r e s p i t e c a r e s e r v i c e s . We w i l l c o m p l e t e s e v e n (.7) p a p e r - a n d p e n c i l q u e s t i o n n a i r e s each time: once b e f o r e our f a m i l y b e g i n s t o r e c e i v e r e s p i t e s e r v i c e s , and a g a i n s i x (6) months l a t e r , and s i x (6) months a f t e r t h a t . Some c o n v e r s a t i o n s may be t a p e r e c o r d e d and t r a n s c r i b e d l a t e r and Myra o r L i n d a w i l l a l s o w r i t e some n o t e s a b o u t h e r o b s e r v a t i o n s . She w i l l a l s o r e c o r d some c o s t - r e l a t e d i n f o r m a t i o n f r o m o u r c h i l d ' s in-home r e s p i t e c a r e c h a r t , f r o m t h e NRP o f f i c e r e c o r d s , A t Home Program, and I n - S c h o o l S u p p o r t r e c o r d s . We a r e b e i n g a s k e d t o keep a d i a r y a b o u t o u r e x p e r i e n c e s w i t h t h e NRP and i t s a s s o c i a t e d c o s t s . The t i m i n g o f v i s i t s w i l l be a r r a n g e d a t o u r f a m i l y ' s c o n v e n i e n c e , and w i l l l a s t 2-4 h o u r s e a c h . We c a n a s k any q u e s t i o n s a b o u t t h e r e s e a r c h a t any t i m e b e f o r e , during, or a f t e r the study.  Risks/Discomforts: T a l k i n g a b o u t o u r f a m i l y ' s s i t u a t i o n may be d i f f i c u l t o r unpleasant at times. However, we a r e f r e e t o s h a r e w h a t e v e r a s p e c t s o f o u r f a m i l y l i f e we w i s h . We may r e f u s e t o answer any q u e s t i o n a t any t i m e w i t h o u t any r e p e r c u s s i o n s f o r o u r f a m i l y o r i n d i v i d u a l members o r o u r child's care. Having another n u r s i n g p r o f e s s i o n a l i n our home may p r e s e n t an a d d i t i o n a l t h r e a t t o o u r p r i v a c y and w i l l r e q u i r e our c o o p e r a t i o n , but s e v e r a l p r e c a u t i o n s w i l l be t a k e n t o p r o t e c t o u r p r i v a c y and i d e n t i t i e s : A l l q u e s t i o n n a i r e s , d a t a summaries, d i a r i e s , t a p e s , and w r i t t e n m a t e r i a l s a r e i d e n t i f i e d by a number known o n l y t o t h e r e s e a r c h e r s and t h e r e s e a r c h a s s i s t a n t , n o t by o u r names. A l l t h e s e a r e k e p t i n a l o c k e d c a b i n e t and a r e o n l y f o r t h e r e s e a r c h e r s ' use. Our i n d i v i d u a l i d e n t i t i e s w i l l n o t be made e v i d e n t i n any p u b l i c a t i o n o r r e p o r t , and any s m a l l segments o f o u r r e c o r d e d c o n v e r s a t i o n s u s e d i n p r i n t w i l l  82  o b s e r v a t i o n , o r c o m p l e t i o n o f a form a t any t i m e , r e p e r c u s s i o n s o f any k i n d f o r o u r f a m i l y .  without  Consent We w i l l be g i v e n a c o p y o f t h i s c o n s e n t / a s s e n t t o keep. I/we c o n s e n t t o p a r t i c i p a t e : Signature o f Parent Signature o f Parent Signature o f Researcher •  Date  Name o f c h i l d who h a s r e c e i v e d d e v e l o p m e n t a l l y a p p r o p r i a t e i n f o r m a t i o n about t h e s t u d y , b u t i s n o t a b l e t o g i v e h i s / h e r own c o n s e n t  I consent/do  not consent: Signature o f Parent Signature of Child  Name o f c h i l d who has r e c e i v e d d e v e l o p m e n t a l l y a p p r o p r i a t e i n f o r m a t i o n about t h e s t u d y , b u t i s n o t a b l e t o g i v e h i s / h e r own c o n s e n t  I consent/dp  not consent: ^Signature o f Parent Signature of Child  83  When study r e s u l t s are a v a i l a b l e , I/we wish t o r e c e i v e a b r i e f r e p o r t . These are t o be mailed t o :  Name(s) S t r e e t Address City/Town  Code  

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