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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 of Norwich 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 i n THE FACULTY OF GRADUATE STUDIES School of Nursing We accept t h i s t h e s i s as conforming t o the r e q u i r e d standard TH^Jl|NIVERSIrfY OF BRITISH COLUMBIA October, 1995 © L i n d a Margaret 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) A b s t r a c t 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 by pa r e n t s w i l l i n g and a b l e t o c a r e f o r t h e s e c h i l d r e n a t home. Wh i l e p e d i a t r i c home c a r e may decrease 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 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 . To i l l u m i n a t e t h i s c h i l d c a r e dilemma, t h i s s t u d y examines 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 complex 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 so u r c e o f c h i l d c a r e . T h i s i n v e s t i g a t i o n 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 , p r e - p o s t d e s c r i p t i v e d e s i g n study e v a l u a t i n g t h e N u r s i n g R e s p i t e Program i n B r i t i s h Columbia, Canada. To e x p l o r e t h e pr o c e s s by which p a r e n t s use 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 ( p r e -r e s p i t e s e r v i c e ) and second (six-months a f t e r b e g i n n i n g 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 au 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 c o n s t a n t comparative method. Study f i n d i n g s i n d i c a t e t h a t 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 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 hrough a p r o c e s s o f p e r p e t u a l i n n o v a t i o n . Throughout t h i s p r o c e s s , dynamic s i t u a t i o n a l f a c t o r 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 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 c a r e . 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 adopt 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 . Together, t h e s e 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 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 i n n o v a t i o n . W h i l e l i t e r a t u r e r e l a t e d t o t h e s e s t u d y f i n d i n g s i s s p a r s e , t h e f i n d i n g s a r e d i s c u s s e d w i t h i n t h e c o n t e x t o f 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 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 . I n a d d i t i o n , c o n c e p t u a l cues which may be used t o i n t e g r a t e s t u d y f i n d i n g s i n t o t h e l a r g e r e v a l u a t i o n s t u d y a r e i d e n t i f i e d . F i n a l l y , p o l i c y i m p l i c a t i o n s o f s t u d y f i n d i n g s a r e d i s c u s s e d i n r e l a t i o n t o p e d i a t r i c r e s p i t e c a f e d e l i v e r y . iv Table of Contents Abstract i i Table of Contents i v Acknowledgements v i i i Dedication ix Chapter 1 1 Problem Background 1 Child 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 Families who have Children with Chronic Conditions , 13 Categorical versus Noncategorical Approaches i 15 Unit of Analysis 15 Summary 16 Chapter 2 17 Methods 17 Design 17 Grounded Theory * 18 V Theoretical Underpinnings of Grounded Theory 19 Sampling, Setting, and Data Collection 20 Data Analysis .... 23 Six Family Vignettes 25 The Adams , 26 The Bent leys 26 The Carvers. 28 The Darwins 28 The Emerys 29 The Fowlers 31 Summary 32 Chapter 3 .'. 34 Perpetual Innovation Child Care for Children with Medically Complex Conditions 34 situa t i o n a l Factors 35 Child-related factors 35 Parent-related factors 36 RN-related factors 37 Factors related to Nursing Respite Program operations • • • 38 Perpetual Innovation i n Context 40 Perpetual Innovation Strategies A Decision-Making Framework 42 vi P r i o r i t i z i n g p a r e n t a l a c t i v i t i e s r e q u i r i n g c h i l d c a r e 43 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 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 46 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 48 Matching c h i l d , p a r e n t , n u r s e , and o t h e r s i t u a t i o n a l f a c t o r s t o o p t i m i z e c h i l d c a r e s i t u a t i o n 50 Consequences o f P e r p e t u a l I n n o v a t i o n 52 Summary 57 Chapter 4 59 D i s c u s s i o n . . 59 C h i l d Care 61 P a r e n t 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 63 Comprehensive R e s p i t e Care D e l i v e r y 65 Summary 68 Chapter 5 i • . 69 I m p l i c a t i o n s * 69 C o n c l u s i o n . . . 7 2 References 74 Appendix A L e t t e r t o F a m i l i e s i 78 vii Appendix B Consent / Assent t o P a r t i c i p a t e i n Research P r o j e c t . . . 8 0 viii Acknowledgements I would l i k e t o thank my a d v i s o r , D r . V i r g i n i a Hayes , f o r her support and encouragement, and f o r g i v i n g me the o p p o r t u n i t y t o work on the N u r s i n g R e s p i t e Program e v a l u a t i o n p r o j e c t . I would a l s o l i k e t o thank committee members P r o f . Connie Canam and D r . S a l l y Thorne who p r o v i d e d v a l u a b l e i n p u t throughout the development o f t h i s t h e s i s . Thanks a l s o t o members o f the N u r s i n g R e s p i t e Program e v a l u a t i o n team, D r . Hayes , Pam M c E l h e r a n , and Myra P e r c y , f o r t h o u g h t - p r o v o k i n g d i s c u s s i o n s . In a d d i t i o n , I am g r a t e f u l t o s tudy f a m i l i e s f o r i n v i t i n g me t o see the wor ld through t h e i r eyes . Thanks t o my p r o f e s s o r s and c lassmates a t UBC, e s p e c i a l l y members o f the "Thesis Support Group"I I am a l s o g r a t e f u l t o the F a c u l t y o f Graduate S t u d i e s a t U . B . C . f o r the f o l l o w i n g f i n a n c i a l s u p p o r t : U n i v e r s i t y Graduate F e l l o w s h i p , the Mabel Johnston S c h o l a r s h i p i n N u r s i n g , and the R . E . McKechnie Graduate S c h o l a r s h i p . F i n a l l y , a s p e c i a l thanks t o my husband, G r e g , whose l o v e and d e v o t i o n a r e a cons tant source o f i n s p i r a t i o n t o me. D e d i c a t i o n To Greg: For 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 chase my dreams. 1 Chapter 1 Problem Background Advances i n technology, pharmacology, and medical care contribute to increasing numbers of children with medically complex conditions l i v i n g at home (Cohen & Pinnick, 1989; Hobbs, Perrin, & Ireys, 1985). While these advances enable sophisticated, l i f e - s u s t a i n i n g care to be delivered to these children, someone must invest time and energy to provide such care. This r e s p o n s i b i l i t y i s usually assumed by parents. In North America, the current trend i s to keep children with medically complex conditions at home whenever possible (Cohen & Pinnick, 1989). Research suggests that the advantages of pediatric home care include s o c i a l and developmental benefits to children, as well as decreased costs to the health care system (Cohen & Pinnick). Given these benefits, and the a v a i l a b i l i t y of sophisticated, portable technology, the trend toward high-technology home care for children with medically complex conditions i s l i k e l y to increase. When children with medically complex conditions l i v e at home, parents 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 children are healthy, parenting can be a demanding, exhausting experience. For example, infant feeding schedules often interrupt parental sleep, while i n q u i s i t i v e 2 toddlers require constant parental supervision. When parents have children with medically complex conditions, the demands on parents multiply. For example, t h e i r children may require v i g i l a n t monitoring, symptom management, or technological interventions such as suctioning or d i a l y s i s . Child Gare According to Berns (1993), c h i l d care i s "care given to children by persons other than parents during the parts of the day that parents are absent" (p. 185). It i s care that parents delegate to others, rather than care that parents provide to children themselves. Child care enables parents to work outside the home, to complete household tasks, to attend school, to sustain interpersonal relationships with family and friends, or to engage i n leisure a c t i v i t i e s . To gain temporary r e l i e f from parenting a c t i v i t i e s , parents of healthy children might e n l i s t the assistance of extended family, hire babysitters, u t i l i z e daycares, or en r o l l children i n lessons. Such c h i l d care options enable parents to rejuvenate from parenting a c t i v i t i e s , and f u l f i l l other roles and r e s p o n s i b i l i t i e s . In contrast, parents of children with medically complex conditions often have d i f f i c u l t y finding caregivers who possess the knowledge and s k i l l to safely care for t h e i r children (Crowley, 1990; Teague, Fleming, Castle, Kiernan, Lobo, 3 Riggs, & Wolfe, 1993). Given the a d d i t i o n a l c h i l d - r e l a t e d care demands experienced by these parents, t h i s s c a r c i t y of c h i l d care becomes a p o t e n t i a l l y s e r i o u s dilemma. Respi t e Care R e s p i t e care i s a p o t e n t i a l source o f c h i l d c a r e f o r parents of 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 purpose of 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 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 r e l a t e d t o t h e i r a f f e c t e d c h i l d r e n . A s p e c i f i c form of 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 provided t o these c h i l d r e n by nurses. In B r i t i s h Columbia, the M i n i s t r y o f Health funds in-home p e d i a t r i c n ursing r e s p i t e c a r e f o r some of these c h i l d r e n and t h e i r f a m i l i e s through the B.C. Nursing Respite Program ( B r i t i s h Columbia M i n i s t r y of Health and M i n i s t r y Responsible f o r S e n i o r s , 1992). The B.C. Nursing Respite Program i s unique among r e s p i t e c a r e models. Since the 1970's, a v a r i e t y of r e s p i t e models have emerged, each with i t s own strengths and weaknesses (Ahmann, 1986; Cohen, 1982; Cohen & Warren, 1985; O'Connor, Vander P l a a t s , & Betz, 1992; Upshur, 1982). These models vary on a t t r i b u t e s such as c r e d e n t i a l s and t r a i n i n g of r e s p i t e care p r o v i d e r s , s i t e of r e s p i t e c a r e d e l i v e r y , age of 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 p h y s i c a l o r developmental needs o f i n d i v i d u a l s e l i g i b l e t o r e c e i v e r e s p i t e c a r e . 4 Current l i t e r a t u r e i d e n t i f i e s the need f o r improved q u a l i t y and s k i l l o f r e s p i t e c a r e g i v e r s p r o v i d i n g c a r e t o i n d i v i d u a l s with m e d i c a l l y and b e h a v i o r a l l y complex c o n d i t i o n s (Cohen, 1982; Upshur, 1982). In a d d i t i o n , the l i t e r a t u r e i n d i c a t e s t h a t i n d i v i d u a l s with complex care needs are o f t e n i n e l i g i b l e t o r e c e i v e r e s p i t e c a r e s e r v i c e s (Halpern, 1985; O'Connor, P l a a t s , & Betz, 1992; & Upshur, 1982). As Cohen i n d i c a t e s , c a r e g i v e r s k i l l s matter l e s s when the purpose of r e s p i t e i s t o provide companionship 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 care possess h e a l t h o r b e h a v i o r a l c o n d i t i o n s which may r e q u i r e i n t e r v e n t i o n by the r e s p i t e c a r e g i v e r . Such f i n d i n g s suggest t h a t parents 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 , such as s u c t i o n i n g , may have d i f f i c u l t y f i n d i n g i n d i v i d u a l s w i l l i n g o r capable of p r o v i d i n g t h e i r c h i l d r e n with the complex, demanding care they need. Nursing Respite Care Nurses possess both the knowledge and s k i l l t o r e l i e v e 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, by p r o v i d i n g comprehensive r e s p i t e c a r e . However, few p e d i a t r i c nursing r e s p i t e programs di s c u s s e d i n the h e a l t h c a r e l i t e r a t u r e , d e s c r i b e these programs from the p e r s p e c t i v e o f r e c i p i e n t s o r emphasize program outcomes. For example, i n a d i s c u s s i o n a r t i c l e , H ildebrandt (1983) d e s c r i b e s an in-home r e s p i t e program 5 s e r v i n g the e l d e r l y and others who have c h r o n i c c o n d i t i o n s o r p h y s i c a l or developmental d i s a b i l i t i e s , but does not i n d i c a t e i f the program serves c h i l d r e n . Furthermore, while a nurse p r a c t i t i o n e r coordinates the program, r e s p i t e care i s provided by a t r a i n e d c a r e g i v e r , and not a nurse. In another a r t i c l e , Hurt, Brodsky, 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 nurse b a b y s i t t i n g s e r v i c e f o r 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 discharged from an i n t e n s i v e care nursery. Using a nonvalidated q u e s t i o n n a i r e which was administered t o e l i g i b l e users and nonusers of t h i s s e r v i c e , the authors determined t h a t a l l users f e l t more comfortable l e a v i n g t h e i r i n f a n t w i t h a nurse than w i t h another i n d i v i d u a l , and 71% of users would not have gone out i n the absence of a nurse. While t h i s e x p l o r a t o r y study suggests t h a t parents of i n f a n t s who have m e d i c a l l y complex c o n d i t i o n s may 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 care, i t does not examine how parents u t i l i z e t h i s s e r v i c e i n r e l a t i o n t o other c h i l d c a r e o p t i o n s . F i n a l l y , Sherman (1995) examines the i n f l u e n c e of i n -home p e d i a t r i c r e s p i t e care provided by nurses over a p e r i o d of s i x months on 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 o f l i f e . While Sherman uses a s i n g l e group, pre-post t e s t design t o examine the i n f l u e n c e of r e s p i t e on these v a r i a b l e s , 64% of 73 informants d i d not complete post t e s t measures. Consequently, r e s u l t s should be i n t e r p r e t e d with c a u t i o n . Findings from two surveys and 6 one p a r e n t s a t i s f a c t i o n q u e s t i o n n a i r e i n d i c a t e t h a t r e s p i t e u t i l i z a t i o n r e l a t e s i n v e r s e l y t o p s y c h o l o g i c a l symptoms 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 c o n t r i b u t e t o a d ecrease i n c h i l d h o s p i t a l i z a t i o n s ; p r o v i d e s p a r e n t s w i t h o p p o r t u n i t i e s t o r u n e r r a n d s , a t t e n d t o p e r s o n a l b u s i n e s s , and pursue r e l a t i o n s h i p s w i t h spouses, o t h e r c h i l d r e n and f r i e n d s ; and may p r o v i d e s o c i a l i z a t i o n o p p o r t u n i t i e s t o t h e c h i l d . 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 o f l i f e , Sherman's st 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 knowledge r e g a r d i n g in-home n u r s i n g r e s p i t e 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 . However, he does not examine t h e p r o c e s s by which p a r e n t 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 i n r e l a t i o n t o o t h e r s o u r c e s o f c a r e f o r t h e i r c h i l d . 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 t h e p a u c i t y o f 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 p r e s e n t s t u d y seeks t o i n v e s t i g a t e t h e problem from t h e 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 n u r s i n g r e s p i t e c a r e t h r o u g h t h e B r i t i s h Columbia 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. B r i t i s h Columbia N u r s i n g R e s p i t e Program The B.C. N u r s i n g R e s p i t e Program p r o v i d e s in-home 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 19 and under who have m e d i c a l l y complex c o n d i t i o n s , o r who a r e 7 technology dependent. The purpose o f the program i s t o tempor a r i l y r e l i e v e parents from the day t o day demands of c a r i n g f o r c h i l d r e n with complex needs. 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 re-admissions of 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 , enable parents t o attend t o other r e l a t i o n s h i p s w i t h i n the home and community, as w e l l as pursue a c t i v i t i e s other than d i r e c t c h i l d care ( B r i t i s h Columbia M i n i s t r y of Health and M i n i s t r y Responsible 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 the Nursing R e s p i t e Program i s accepted, the c h i l d and f a m i l y meet with one of seven r e g i o n a l nursing c o n s u l t a n t s l o c a t e d throughout the pro v i n c e . The c o n s u l t a n t v i s i t s the c h i l d and f a m i l y a t home or i n h o s p i t a l , and assesses the c h i l d and f a m i l y ' s r e s p i t e needs. She subsequently presents t h i s assessment t o a s c r e e n i n g committee, which determines the c h i l d ' s e l i g i b i l i t y f o r the Nursing Respite Program. To be e l i g i b l e , the c h i l d must r e q u i r e , i n the absence of a parent, a r e g i s t e r e d nurse or l i c e n s e d p r a c t i c a l nurse as c a r e g i v e r ( B r i t i s h Columbia M i n i s t r y of Health and M i n i s t r y Responsible f o r S e n i o r s , 1992). Based on data c o l l e c t e d by the nur s i n g c o n s u l t a n t , the Nursing 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 one of f i v e c l a s s i f i c a t i o n groups. These groups determine the frequency, d u r a t i o n , and type of r e s p i t e care t h a t a c h i l d may r e c e i v e . Depending on the c h i l d ' s c o n d i t i o n over time, 8 t h e p r o v i s i o n o f n u r s i n g r e s p i t e c a r e might i n c r e a s e o r d e c r e a s e . C h i l d r e n whose c o n d i t i o n s improve a r e e v e n t u a l l y d i s c h a r g e d 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 might remain on t h e program u n t i l t h e y d i e . The n u r s i n g c o n s u l t a n t conducts ongoing assessments t o determine t h e l e v e l o f n u r s i n g r e s p i t e c a r e r e q u i r e d f o r each c h i l d and f a m i l y . A f t e r d e t e r m i n i n g t h e c h i l d ' s r e q u i r e d l e v e l o f c a r e , t h e n u r s i n g c o n s u l t a n t r e f e r s t h e c h i l d t o a p r i v a t e n u r s i n g agency. I n c o l l a b o r a t i o n w i t h t h e 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 agency nurses 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 . I n a d d i t i o n , t h e c o n s u l t a n t works w i t h agency s t a f f t o d e v e l o p a n u r s i n g c a r e p l a n , which i s approved by p a r e n t s . To summarize, t h e BC N u r s i n g R e s p i t e Program p r o v i d e s p a r e n t 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 w i t h a s o u r c e o f c h i l d c a r e . However, l i t t l e i s known about t h e p r o c e s s by which 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 c a r e 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 p r o c e s s through which 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 n u r s i n g r e s p i t e c a r e w i t h t h e i r o t h e r s o u r c e s o f c h i l d c a r e . T h i s a n a l y s i s i s b e i n g conducted w i t h i n t h e c o n t e x t o f a l a r g e r study by Dr. V. Hayes and P. McElheran (Otterman), 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 Q u e s t i o n 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 by 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 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 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 ? T h i s s p e c i f i c 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 generate mid-range t h e o r y about 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 purpose 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 about t h e manner i n which 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 choose 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 o t h e r s o u r c e s o f c h i l d c a r e . To d i s c o v e r s o c i a l p r o c e s s e s 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 re-emphasize, t h i s a n a l y s i s i s p a r t o f a l a r g e r e v a l u a t i o n s t u d y b e i n g conducted by Dr. V. Hayes and P. McElheran (Otterman). Commencing i n A p r i l 1994 and 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 uses 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 p a r e n t s 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 of n u r s i n g c a r e through t h e N u r s i n g R e s p i t e Program, as w e l l as s i x and t w e l v e months a f t e r i n i t i a l d a t a c o l l e c t i o n . 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 as c h i l d c a r e by a n a l y z i n g t h e q u a l i t a t i v e d a t a . F i n d i n g s p r e s e n t e d i n t h i s r e p o r t 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 from Hayes and McElheran's s t u d y . 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 used t o d i s c u s s t h e s e f i n d i n g s r e f l e c t s t h e ongoing n a t u r e o f t h i s s t u d y . F o r e s t r u c t u r e My i n t e r e s t i n t h i s r e s e a r c h problem emerges from 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 . T h i s e x p e r i e n c e i n c l u d e s p r e p a r i n g p a r e n t s f o r d i s c h a r g e o f 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 o t h e r t e c h n o l o g i e s . A f t e r d i s c h a r g e o f t h e i r c h i l d r e n from 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 f i n d i n g c a r e g i v e r s q u a l i f i e d t o d e l i v e r h i g h - t e c h n o l o g y c a r e t o t h e i r c h i l d r e n . S ubsequently, t h e y e x p e r i e n c e l i t t l e r e l i e f 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 . Such p a r e n t accounts encourage me t o understand t h e e x p e r i e n c e 11 o f p a r e n t s 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 end, I have e x p l o r e d t h rough academic s t u d y 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 o f 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 exposure 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 on h e a l t h promotion and community n u r s i n g has been 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 acknowledge 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 t h e p o t e n t i a l f o r h e a l t h i n s i t u a t i o n s o f apparent i l l n e s s o r c h r o n i c i t y . I n a d d i t i o n , my exposure t o t h e work 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 has s e n s i t i z e d me t o t h e t o p i c under stu d y (Anderson, 1981; Anderson & E l f e r t , 1989; Canam, 1993; Hayes 1992; Robinson, 1985). My approach 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 by academic c l i n i c a l e x p e r i e n c e s , which exposed 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 de s i g n e d t o s e r v e 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 . T h i s exposure 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 development o f a v o l u n t e e r grandparent program f o r f a m i l i e s who have c h i l d r e n w i t h " s p e c i a l needs", a program which p o t e n t i a l l y p r o v i d e s p a r e n t s w i t h a break 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 . I n a d d i t i o n t o c l i n i c a l e x p e r i e n c e and academic c o u r s e s , I work as a r e s e a r c h a s s i s t a n t f o r Dr. Hayes and 12 Ms. McElheran on t h e i r study e v a l u a t i n g the B r i t i s h Columbia Nursing Respite Program. Since the beginning of the p i l o t phase o f t h i s p r o j e c t , I have c o l l e c t e d 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 data with f a m i l i e s of c h i l d r e n r e q u i r i n g nursing r e s p i t e care, and have p a r t i c i p a t e d i n an a l y z i n g q u a l i t a t i v e data using grounded theory. Thus, my work as a research a s s i s t a n t d i r e c t l y i n f l u e n c e s my i n t e r e s t i n t h i s research q u e s t i o n . S p e c i f i c a l l y , p r e l i m i n a r y data suggest t o me t h a t the number and 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 parents may delegate the care of 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 parents, a phenomenon which causes me t o con s i d e r how parents u t i l i z e n u rsing r e s p i t e as a source of c h i l d c a r e . Assumptions When conducting r e s e a r c h , the 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 p e r s p e c t i v e s regarding the p o p u l a t i o n under study ( K n a f l & D e a t r i c k , 1987). Assumptions u n d e r l y i n g t h i s study r e l a t e t o three methodological i s s u e s d e s c r i b e d i n l i t e r a t u r e examining f a m i l i e s , or f a m i l y members, who l i v e with 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 . F i r s t , 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 approaches t o studying f a m i l i e s o f 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 . Second, S t e i n and Jessop (1989), as w e l l as P l e s s and P e r r i n (1985), debate the extent t o which parents of 13 c h i l d r e n 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 u n i t of a n a l y s i s i n f a m i l y research, and i t s i m p l i c a t i o n s . I w i l l d e s c r i b e these i s s u e s and t h e i r u n d e r l y i n g assumptions, and d i s c u s s t h e i r relevance t o my study. Studying F a m i l i e s who have C h i l d r e n with Chronic Conditions According t o K n a f l & D e a t r i c k (1987), researchers studying f a m i l i e s of c h i l d r e n with c h r o n i c c o n d i t i o n s u t i l i z e one o f two approaches, each founded on d i f f e r e n t assumptions. 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 provide a framework f o r o r g a n i z i n g and 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 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 . While they use the term "family" t o d e s c r i b e t h e i r framework, they i l l u s t r a t e t h i s framework with 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 a n a l y s i s . For example, study informants may be mothers, parents, s i b l i n g s , the c h i l d with a c h r o n i c c o n d i t i o n , o r the f a m i l y as a whole. Consequently, t h i s framework a p p l i e s t o my study, i n which parents are the u n i t of a n a l y s i s . Researchers using the Objective/Passive/Outcome Approach (OPOA) seek t o measure, p r e d i c t , and c o n t r o l the impact 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 & Dea t r i c k , 1987). Use of t h i s approach 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 the 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 used by f a m i l i e s t o manage the 14 c h i l d ' s c o n d i t i o n a r e not addressed. C o n v e r s e l y , r e s e a r c h e r s 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 (SAPA), seek t o understand 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 w i t h i n t h e c o n t e x t o f f a m i l y l i f e ( K n a f l & D e a t r i c k ) . Researchers u s i n g t h i s approach assume t h a t l i v i n g w i t h a c h i l d who has a c h r o n i c c o n d i t i o n i s not n e c e s s a r i l y a n e g a t i v e s i t u a t i o n ? r a t h e r f a m i l i e s d e f i n e t h e i r own e x p e r i e n c e s . 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 problems 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 and groups, SAPA acknowledges t h a t f a m i l i e s and 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 and manage c h r o n i c c o n d i t i o n s . I n k e e p i n g w i t h SAPA assumptions, I conducted t h i s s t u d y assuming 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 c a r e d e s i r e a break from 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 . Furthermore, t h e s e p a r e n t s a c t i v e l y 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 , o t h e r sources o f c h i l d c a r e t o o b t a i n r e l i e f 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 . U n d e r l y i n g t h e s e assumptions i s t h e premise 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 c a r e . 15 C a t e g o r i c a l versus Noncategorical Approaches While d i f f e r e n t 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 present parents with d i v e r s e care i s s u e s , parents of c h i l d r e n with d i f f e r e n t c h r o n i c c o n d i t i o n s a l s o f ace s i m i l a r c a r e i s s u e s (Pless & P e r r i n , 1985; S t e i n & Jessop, 1989). In c o l l e c t i n g and a n a l y z i n g data i n t h i s study 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 the m e d i c a l l y complex Co 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 the B.C. Nursing Respite Program, s i m i l a r i t y e x i s t s among parent s t r a t e g i e s t o u t i l i z e n u rsing r e s p i t e care as a form of c h i l d c a r e . Consequently, d i v e r s i t y among the 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 parents 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 of c h i l d r e n with 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 c a r e . U n i t of A n a l y s i s Data c o l l e c t e d from i n d i v i d u a l f a m i l y members, dyads o r o t h e r f a m i l y subgroups, o r the f a m i l y as a whole, y i e l d d i f f e r e n t and not n e c e s s a r i l y congruent p e r s p e c t i v e s o f f a m i l y l i f e (Thomas, 1987). Since parents are the u n i t of a n a l y s i s i n the proposed study j, I am assuming t h a t study f i n d i n g s w i l l d e s c r i b e the parent p e r s p e c t i v e on the process by which 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 c a r e o p t i o n s , and t h a t the c h i l d r e c e i v i n g n u r s i n g r e s p i t e , s i b l i n g s , o r other f a m i l y members such as grandparents, 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 e x p r e s s e d 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 mother o r f a t h e r may o r may not be ex 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 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 by p a r e n t s w i l l i n g and a b l e t o c a r e f o r c h i l d r e n a t home. P o t e n t i a l advantages 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, as w e l l as s o c i a l and developmental b e n e f i t s t o t h e c h i l d r e n . Yet p a r e n t s 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 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 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 p a r e n t s a p o t e n t i a l s o u r c e 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 c o n d i t i o n s . To shed l i g h t on t h e c h i l d c a r e dilemma f a c e d by t h e s e p a r e n t s , t h i s s t u d y s e t s o u t a b e g i n n i n g 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 complex 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 p o t e n t i a l source o f c h i l d c a r e . The next 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 used t o examine t h i s phenomenon. 17 Chapter 2 Methods Design Since my study 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 being conducted by Hayes and McElheran (Otterman), i t s design i s i n f l u e n c e d by the design o f the l a r g e r study. To c o l l e c t both 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 co-i n v e s t i g a t o r s are u s i n g a pre-post-post e x p l o r a t o r y d e s c r i p t i v e design, i n which data are c o l l e c t e d from f a m i l i e s a t t h r e e , six-month time i n t e r v a l s . Q u a l i t a t i v e data are being c o l l e c t e d and analyzed u s i n g grounded theory. Grounded theory methods are congruent w i t h e x p l o r i n g s o c i a l processes i n v o l v e d i n parents' u t i l i z a t i o n of nursing r e s p i t e as c h i l d c a r e . By u s i n g grounded theory t o explore t h i s phenomenon, I a l s o a v o i d v i o l a t i n g p h i l o s o p h i c a l assumptions g u i d i n g data 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 of grounded theory i s t h e o r e t i c a l sampling, which d i r e c t s the researcher t o seek data s e l e c t i v e l y , r a t h e r than a t s e t time i n t e r v a l s , t o i l l u m i n a t e concepts r e l e v a n t t o the emerging theory {Strauss & Corbin, 1990). Since the q u a n t i t a t i v e s i d e o f Hayes and McElheran's study design r e q u i r e s data t o be c o l l e c t e d a t s e t time i n t e r v a l s , informants are being interviewed on a schedule, r a t h e r than p r i m a r i l y by t h e i r a b i l i t y t p inform s p e c i f i c t h e o r e t i c a l concepts as they a r i s e d u r i n g a n a l y s i s . While t h i s 18 sampling p l a n weakens pure t h e o r e t i c a l sampling procedures, i t provided me with an o p p o r t u n i t y t o capture process by comparing 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 before and s i x months a f t e r parents begin nursing r e s p i t e s e r v i c e s . During the course of my study, other r e l a t e d analyses have simultaneously been conducted with these data by members of the e v a l u a t i o n research team. As a member of t h i s team, I have i n f l u e n c e d subsequent data c o l l e c t i o n , enhanced my t h e o r e t i c a l s e n s i t i v i t y , and s e n s i t i z e d o t h e r team members t o the concept of p e d i a t r i c n u r s i n g r e s p i t e as a form of c h i l d c a r e . Once t h e s i s requirements have been met, I w i l l continue t h i s c o l l a b o r a t i o n , i n c o r p o r a t i n g f u t u r e f i n d i n g s i n t o the p r e l i m i n a r y f i n d i n g s presented i n t h i s t h e s i s , and weaving t h i s work i n t o the l a r g e r e v a l u a t i o n study. Grounded Theory Grounded theory seeks t o d e s c r i b e s o c i a l processes through which people d e f i n e and make sense o f t h e i r world (Hutchinson, 1986). Theory generated 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 from the study of the phenomenon i t represents ... i t i s discovered, developed, and p r o v i s i o n a l l y v e r i f i e d through systematic data c o l l e c t i o n , and a n a l y s i s of data p e r t a i n i n g t o t h a t phenomenon" (Strauss & Corbin, 1990, p. 23). Grounded theory e n t a i l s simultaneous c o l l e c t i o n , coding, and a n a l y s i s of d a t a . T h e o r e t i c a l sampling 19 procedures enable the r e s e a r c h e r 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 dimensions, 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 between c a t e g o r i e s (Strauss & Corbin, 1990). T h e o r e t i c a l sampling, i n combination with open, a x i a l , and s e l e c t i v e coding procedures, c o n t r i b u t e t o the i n d u c t i v e , r i g o r o u s , a n a l y t i c processes of grounded theory from which e m p i r i c a l l y based theory emerges (Hutchinson, 1986; Strauss & C o r b i n ) . T h e o r e t i c a l Underpinnings o f Grounded Theory When using grounded theory methods, the researcher r e l a t e s concepts and c a t e g o r i e s emerging from the data i n t o a conceptual framework (Hutchinson, 1986). As i t emerges, t h i s framework guides f u r t h e r t h e o r e t i c a l sampling and data a n a l y s i s . T h i s approach d i f f e r s from v e r i f i c a t i o n a l research, i n which a s e l e c t e d t h e o r e t i c a l framework guides the study (Hutchinson). The i d e a o f an emerging framework i n grounded theory misleads some i n t o t h i n k i n g t h a t grounded theory i s " a t h e o r e t i c a l " (Chenitz & Swanson, 1986, p. 46). On the c o n t r a r y , symbolic i n t e r a c t i o n i s m provides a foundation f o r the grounded theory method, and e n r i c h e s i n t e r p r e t a t i o n of the emerging theory (Chenitz & Swanson; Hutchinson). The symbolic i n t e r a c t i o n i s t underpinnings of grounded theory are congruent with examining how parents p e r c e i v e 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 , and the process by which parents u t i l i z e n u rsing r e s p i t e i n r e l a t i o n t o other 20 forms of c h i l d c a r e . Symbolic i n t e r a c t i o n i s m focuses on the processes of s o c i a l i n t e r a c t i o n through which i n d i v i d u a l s 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 , the world, and s o c i a l a c t i o n (Blumer). Symbolic i n t e r a c t i o n i s t s view the s e l f as r e f l e c t i v e and ever-e v o l v i n g . The s o c i a l world i n which the i n d i v i d u a l e x i s t s and upon which the i n d i v i d u a l r e f l e c t s i s composed of concrete and a b s t r a c t o b j e c t s . The i n d i v i d u a l endows these o b j e c t s with symbolic meaning; a c t i o n s toward these o b j e c t s r e f l e c t the meaning which they have f o r the i n d i v i d u a l (Blumer). As i n d i v i d u a l s i n t e r a c t i n the o b j e c t world, they both shape and are shaped by t h i s world (Blumer, 1969). An 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 time and context, and meaning v a r i e s among i n d i v i d u a l s . The symbolic i n t e r a c t i o n i s t approach enhances i n t e r p r e t a t i o n of parent p e r s p e c t i v e s on choosing t o use nursing r e s p i t e i n r e l a t i o n t o other forms of c h i l d c a r e . Understanding parent p e r s p e c t i v e s w i l l a s s i s t nurses t o p l a n and d e l i v e r in-home nursing r e s p i t e s e r v i c e s which adapt t o the per c e i v e d c h i l d c a r e needs of parents. Sampling, S e t t i n g , and Data C o l l e c t i o n Informants capable of i l l u m i n a t i n g my t o p i c of study are being r e c r u i t e d through sampling procedures developed f o r Hayes' and McElheran's study. Over a 15 month p e r i o d . 21 f a m i l i e s a d m i t t e d 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 s t u d y . 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 have not r e c e i v e d n u r s i n g c a r e through t h e B.C. N u r s i n g R e s p i t e Program but 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 determined 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 r e s e a r c h a s s i s t a n t t h e n phones e l i g i b l e f a m i l i e s t o answer q u e s t i o n s about 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 t h e s t u d y , t h e r e s e a r c h a s s i s t a n t s c h e d u l e s t h e f i r s t i n t e r v i e w . P r i o r t o t h i s i n t e r v i e w , i n f o r m a n t s r e a d and s i g n a w r i t t e n consent 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 , and t h e n s i x and 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 , and f a m i l i e s a r e f r e e t o withdraw 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 has been 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 S t u d i e s I n v o l v i n g Human S u b j e c t s . A t 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 t r a n s c r i b e d f o r l a t e r a n a l y s i s . I n a d d i t i o n , r e s e a r c h e r s 22 a r e 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 p r o c e s s , 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 which may i n f l u e n c e d a t a c o l l e c t i o n and a n a l y s i s . These f i e l d notes comprise a d d i t i o n a l s o u r c e s o f d a t a . 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 by a l l f o u r members o f t h e r e s e a r c h team. A f t e r i n d i v i d u a l members code t r a n s c r i p t s , t h e team 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 d a t a . E a r l y i n t h i s a n a l y t i c p r o c e s s , 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 see s u p p o r t i v e a s p e c t s 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 i s s u e r e l a t e d t o c h i l d c a r e . I t h u s chose t o pursue t h i s concept o f c h i l d c a r e t h r o u g h f u r t h e r a n a l y s i s . 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 from t h e main 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 d a t a t h a t address 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 c a r e as a form o f c h i l d c a r e . 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. Furthermore, 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 end, I am communicating my f i n d i n g s t o t h e r e s e a r c h team so 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 broader s t u d y f i n d i n g s . 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 d a t a p e r t a i n i n g t o c h i l d c a r e u s i n g t h e c o n s t a n t 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 , 1990). Throughout t h i s p r o c e s s , I kept memos i n t h e form o f code 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 notes t o p r o v i d e a paper t r a i l by which I , t h e r e s e a r c h team, and my t h e s i s committee c o u l d t r a c k t h e p r o c e s s o f d a t a a n a l y s i s ( S t r a u s s & C o r b i n ) . 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 d e v e l o p t h e s e 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 d i m e n s i o n s . 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 which p a r e n t 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 a s o u r c e o f c h i l d c a r e , I a n a l y z e d q u a l i t a t i v e d a t a c o l l e c t e d d u r i n g f i r s t ( p r e -r e s p i t e ) and second (six-month) v i s i t s w i t h t h e p a r e n t s o f s i x f a m i l i e s . 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 e n a b l e d me t o examine t h e e v o l v i n g n a t u r e o f p a r e n t 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 not 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 t i m e o f i n i t i a l i n t e r v i e w s , t h e i r i n t e n t i o n t o u t i l i z e t h i s s e r v i c e suggested t o me t h a t t h e s e i n t e r v i e w s c o u l d p r o v i d e 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 c h i l d c a r e . 24 The d e c i s i o n t o a n a l y z e a p r e s e l e c t e d s u b s e t o f t h e d a t a from t h e e v a l u a t i o n s t u d y was based on pragmatic c o n s i d e r a t i o n s . 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 from f i r s t and second v i s i t s 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 s c h e d u l e d 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 phase 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 another member o f t h e r e s e a r c h team 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 suggests t h a t 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 form o f secondary a n a l y s i s (Thome, 1994). 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 r e s e a r c h q u e s t i o n s g u i d i n g t h e l a r g e r e v a l u a t i o n s t u d y , which r a i s e s t h e i s s u e o f f i t between t h e s e d a t a and t h e r e s e a r c h q u e s t i o n posed i n my p o r t i o n o f t h e a n a l y s i s ( T home). I f t h e s e d a t a had been 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 q u e s t i o n would be s t r o n g e r , and t h e r e s u l t i n g a n a l y s i s denser. W h i l e t h e matter o f " f i t " c a l l s a t t e n t i o n t o an a s p e c t o f my s t u d y d e s i g n which i s c h a r a c t e r i s t i c o f secondary a n a l y s i s , o t h e r a s p e c t s o f t h i s d e s i g n suggest p r i m a r y 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 . For example, my involvement 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 t h e 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 i n s i g h t 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 which i s not always a v a i l a b l e t o a secondary a n a l y s t (Thome, 25 1994). In a d d i t i o n , s i n c e e a r l y data a n a l y s i s conducted f o r the l a r g e r study s e n s i t i z e d me t o the idea of nursing r e s p i t e as s o c i a l support, and subsequently c h i l d c are, my t o p i c of study "emerged" from the data, a process i n keeping with grounded theory (Glaser, 1992). Furthermore, s i n c e my study i s an i n t e g r a l p a r t of the l a r g e r study which i s c u r r e n t l y i n progress, 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 , r e f u t e , and r e f i n e f i n d i n g s from my study. Since haphazard use of secondary a n a l y s i s may undermine the c r e d i b i l i t y of study f i n d i n g s (Thorne, 1994), I f e e l compelled t o address f o r the reader t h i s q u e s t i o n of " f i t " . At the same time, i t i s important t o note t h a t grounded theory i s a method i n t r a n s i t i o n (Strauss & Corbin, 1994), and t h a t the study design may r e f l e c t t h i s f a c t . I r a i s e the i s s u e of whether or not t h i s grounded theory study represents a primary o r secondary a n a l y s i s so t h a t the reader may r e f l e c t upon how the f i t between my research q u e s t i o n and p r e s e l e c t e d data s e t s might i n f l u e n c e study f i n d i n g s . 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 , I present s i x f a m i l y v i g n e t t e s . To p r o t e c t the anonymity of i n d i v i d u a l s and 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 study, I have changed 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 c h i l d ' 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 sources of 26 c h i l d care other than nursing respite care which parents may use. The Adams. Abby and Jim Adams are the parents of 15 year old Mona, and 17 year old Mark. Mona has end-stage renal f a i l u r e , and receives overnight d i a l y s i s at home. Jim i s unemployed and Abby works full-time outside of home. Mona and Abby are the d i a l y s i s experts i n the family. While Mark knows how to i n i t i a t e d i a l y s i s , he views i t as a chore and participates infrequently. Jim i s not involved in any technical aspects of Mona's care. 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 feeling t i r e d or i l l . A dditionally, since Mona sleeps through the d i a l y s i s pump alarms, Abby i s often up at night attending to the d i a l y s i s . While Abby does not want nursing respite throughout the night, she feels that i t i s helpful when Mona i s too sick to i n i t i a t e her own d i a l y s i s , and the during early hours of the teenager's sleep before Abby goes to bed. They receive 16 hours of regularly scheduled respite per week and 8 f l e x i b l e hours which may be scheduled at t h e i r convenience. Other sources of care for Mona never arose during our interviews. The Bentleys. A l i c e Bentley i s the single mother of 23 month old Eddie. An only c h i l d , Eddie has a severe seizure disorder requiring 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- t u b e . Due t o her son's c a r e needs, A l i c e i s unable t o work o u t s i d e t h e home and thus r e c e i v e s s o c i a l a s s i s t a n c e . 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 arrangements. A l t h o u g h E d d i e ' s b i o l o g i c a l f a t h e r l i v e s i n a d i s t a n t town, he and A l i c e keep i n t o u c h by phone. E d d i e ' s f a t h e r c a r e d f o r him one summer f o r a month; and has o f f e r e d t o do t h i s a g a i n . A l i c e a l s o has a b o y f r i e n d who l i v e s nearby. 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 a p p a r e n t l y 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 and co n s e q u e n t l y b a b y s i t s i n f r e q u e n t l y . A l i c e has a l a r g e extended f a m i l y , most o f whom do not 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 f o r her son. A l t h o u g h her s i s t e r sometimes h e l p s w i t h E d d i e , she has a f a m i l y o f her own, and thus o t h e r r e s p o n s i b i l i t i e s . A l i c e mentions o n l y one f r i e n d who p r o v i d e s c h i l d c a r e , but when E d d i e s e i z e s , A l i c e i s uncomfortable a s k i n g h er f r i e n d t o b a b y s i t . E d d i e r e c e i v e s o v e r n i g h t daycare 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 p r o v i d e r . When A l i c e f i r s t heard about t h e N u r s i n g R e s p i t e Program, she d i d not t h i n k t h a t her c h i l d would be e l i g i b l e . A f t e r E d d i e ' s c o n d i t i o n d e t e r i o r a t e d , a h e a l t h c a r e p r o v i d e r i n v o l v e d i n h i s c a r e r e f e r r e d E d d i e t o t h e N u r s i n g 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 his mother were allocated 16 hours of nursing respite per week to be used at Alice's convenience. The Carvers. June and Jacob Carver are the parents of 11 month old twins who were born at 28 weeks gestational age. One of the twins, Hugh, has bronchopulmonary dysplasia, and his care includes the use of oxygen, feeding pumps, and medications. Both parents have children from pr i o r marriages. June's three year old son consistently l i v e s with them, while Jacob's 6 year old daughter l i v e s with t h i s family intermittently. At the time of the f i r s t interview, June was pregnant. In view of the twins' premature delivery, t h i s pregnancy was considered high r i s k . While June i s a homemaker, Jacob's work involves frequent out-of-town t r a v e l . Due to 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. During the f i r s t interview, June expressed ambivalence about receiving nursing respite care. She wondered i f i t would be worth the hassle of involving strangers i n Hugh's care, preferring to use family and friends for c h i l d care. Hugh and his parents receive 12 hours of respite care per week. The Darwins. L i s a and Garth are the married parents of eight month old Kevin. Kevin i s developmentally delayed and has a severe seizure disorder which intermittently causes apneic episodes. When seizures interfere with his 29 breathing, Kevin receives supplemental oxygen as well as medications. He also has a g-tube for feedings. Garth has paid employment while L i s a stays home to care for Kevin. Lisa's adolescent niece l i v e s with t h i s family. Garth and L i s a know few people capable of caring for Kevin i n t h e i r absence. While Lisa'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 requires medical attention. Alternatively, with the exception of seizure management, Lisa'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 that she may wake Li s a i f he seizes or becomes apneic. However, neither parent wants to give t h i s niece f u l l r e s p o n s i b i l i t y for Kevin's care. Nor do they want to overburden any family member with the r e s p o n s i b i l i t y of caring for a c h i l d who may suddenly die. In addition to Lisa's brother and niece, and the Nursing Respite Program, the only other source of c h i l d care which L i s a describes i s monthly weekend respite at a r e h a b i l i t a t i o n centre for children. L i s a emphasizes that without nursing respite care, she would pursue bi-weekly weekend respite care at t h i s centre. The Darwins receive 16 hours of respite per week. The Emerys. Tina Emery i s the single mother of 26 month old Ben. Ben has cerebral palsy, quadriplegia, 3 0 seizures, vi s u a l and auditory d e f i c i t s , chronic renal f a i l u r e , and an intermittent oxygen requirement. Tina and her son recently moved to B r i t i s h Columbia to l i v e with Tina's parents. Although Tina wants to work outside the home to support herself and her son, she has been unable to make the necessary c h i l d care arrangements. After three applications to the Nursing Respite Program and considerable personal e f f o r t by Tina, she and her son were f i n a l l y allocated eight hours of nursing respite care per week, an amount which Tina feels i s inadequate. After investing time and energy i n securing nursing respite services, Tina fears that i f her son's condition shows any improvement, her nursing respite hours might be revoked, despite the fact that an improvement i n her son's condition 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, and Tina's mother i s trained to care for Ben, family members agree that 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 exploring and u t i l i z i n g other c h i l d care options, she i s concerned about the impact of these c h i l d care arrangements on her son's f r a g i l e condition. In one temporary arrangement, a caregiver did not know how to intervene i f Ben became acutely i l l and required oxygen. In another ongoing situation, Ben's exposure to many children and adults increases his chance of developing a 31 r e s p i r a t o r y i n f e c t i o n . When Ben becomes i l l , h i s c a r e needs a r e more complex, t a x i n g b o t h mother and c h i l d . The F o w l e r s . E r i n and Frank Fowler a r e t h e m a r r i e d p a r e n t s o f 27 month o l d E m i l y . 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 hypothalamic 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 from 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. Her m e t a b o l i c imbalance r e q u i r e s 24 hour m o n i t o r i n g and i n t e r v e n t i o n . Both p a r e n t s work f u l l - t i m e , and a r e i n v o l v e d i n E m i l y ' s c a r e . Frank has 3 c h i l d r e n from a f i r s t m a r r i a g e . B i l l , age 15 and Doug, age 9, p r i m a r i l y l i v e 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 her b i o l o g i c a l mother. These 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 on weekends, a l t e r n a t i n g between t h e i r f a t h e r ' s and mother's homes. B i l l i s c a p a b l e o f c a r i n g f o r E m i l y , and sometimes b a b y s i t s so t h a t t h e p a r e n t s may run e r r a n d s . C a r l a a l s o b a b y s i t s , b u t t o a l e s s e r e x t e n t . Doug o f t e n e n t e r t a i n s E m i l y , but i s not i n v o l v e d i n h e r p h y s i c a l c a r e . When E r i n and Frank d e l e g a t e E m i l y ' s c a r e t o s i b l i n g s , t h e y p r o v i d e v a r i o u s 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 needs. E r i n and Frank have h i r e d and 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 babysat E m i l y p r i o r t o the development o f her tumor, her s u r g e r y , and subsequent m e t a b o l i c c o m p l i c a t i o n s . S i n c e t h i s person does not have a 3 2 h e a l t h c a r e background, the parents provide 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 schedule these a c t i v i t i e s d u r i n g hours when they are home. In an emergency, t h i s person may contact E r i n at work, or Emily's p h y s i c i a n . Although the parents have r e g u l a r c h i l d c a r e d u r i n g the week, and 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 from Emily's o l d e r s i b l i n g s , they are s t i l l up with her every n i g h t . Consequently, they p r i m a r i l y schedule 16 hours of t h e i r n ursing r e s p i t e t o enable 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 hours t o schedule a t t h e i r convenience. Summary The information i n these v i g n e t t e s provides a 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 of study f i n d i n g s t o date. Throughout t h i s d i s c u s s i o n , I r e f e r t o s p e c i f i c i n d i v i d u a l s , but attempt t o l i m i t r e p e t i t i o n of information presented i n the v i g n e t t e s . When quoting parents, I f e f e r t o the parent by h i s or her h y p o t h e t i c a l name and r e f e r t o the researcher u s i n g the l e t t e r R. The soufces of s p e c i f i c quotations are noted i n brackets f o l l o w i n g each q u o t a t i o n . For example, S1T1P3L2 i n d i c a t e s study f a m i l y number one ( S I ) , v i s i t o r time one ( T I ) , t r a n s c r i p t page 3 (P3), and l i n e number 2 (L2). In the f o l l o w i n g a n a l y s i s , the grounded theory approach d e s c r i b e d i n Chapter 2 provided 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 p r o c e s s about which l i t t l e i s known. 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 d e s i g n e d t o generate t h e o r y , a procedure which 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 comparative a n a l y s i s , r e l a t i o n s h i p s between concepts 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 form o f c h i l d c a r e . 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 , I d e s c r i b e t h e c o r e c a t e g o r y , p e r p e t u a l i n n o v a t i o n . 34 Chapter 3 P e r p e t u a l I n n o v a t i o n ; 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 T h i s i s a s t o r y o f p e r p e t u a l i n n o v a t i o n , which d e s c r i b e s t h e ongoing 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 c h i l d c a r e arrangements 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 complex 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 an 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 o t h e r r o l e s , t o s u s t a i n r e l a t i o n s h i p s w i t h o t h e r f a m i l y members and f r i e n d s , t o c a r e f o r s e l f , pursue 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 development. The term p e r p e t u a l i n n o v a t i o n c a p t u r e s t h e ongoing c r e a t i v i t y w i t h which p a r e n t s approach t h e t a s k o f p r o v i d i n g a s a f e c a r e 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 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 competent 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 r e s o u r c e . S i n c e t h e i r c h i l d ' s w e l l - b e i n g o f t e n demands c a r e g i v e r s t o possess 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 r e a l m o f n u r s i n g q u a l i f i c a t i o n s , p a r e n t s o f t e n v i e w nurses as unique sources o f c h i l d c a r e . 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 by p a r e n t s who r e q u i r e c a r e 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 , p a r e n t a l a c c e s s t o in-home n u r s i n g r e s p i t e c a r e i s f i n i t e . M a x i m i z i n g t h e use o f t h i s l i m i t e d r e s o u r c e becomes an unending endeavor. 35 S i t u a t i o n a l F a c t o r s When u s i n g n u r s i n g r e s p i t e as a sour c e o f c h i l d c a r e 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 i n n o v a t i o n . 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 o p e r a t i o n s . C h i l d - r e l a t e d f a c t o r s . The c h i l d ' s age, developmental 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 t y p e 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 and 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 s e l f c a r e . When h e a l t h y enough, she i n i t i a t e s and 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 f t o o s i c k t o manage her own d i a l y s i s , her mother e i t h e r d e l e g a t e s t h i s 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 c o n t r a s t , p a r e n t s o f a p r e s c h o o l - a g e d c h i l d manage 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 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 need t o a s s e s s and manage a sudden a c u t e change i n t h e c o n d i t i o n . F o r example, K e v i n Darwin's s e i z u r e s may u n p r e d i c t a b l y t r i g g e r a p n e i c e p i s o d e s . T h i s 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 even b r i e f l y w i t h a c a r e g i v e r who does not know CPR. I n 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 used f o r d i a l y s i s , oxygen a d m i n i s t r a t i o n , o r s u c t i o n i n g , parents c o n s i d e r these complex needs when choosing a c a r e g i v e r . P a r e n t - r e l a t e d f a c t o r s • Above and beyond the p h y s i c a l and emotional care t h a t parents provide t o 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 , parents have other r o l e s , r e s p o n s i b i l i t i e s , and d e s i r e s t o f u l f i l l . Many of these a c t i v i t i e s are optimized i f parents can te m p o r a r i l y 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 i n t h i s study seek c h i l d c a r e i n order t o : 1. Perform household r e s p o n s i b i l i t i e s , such as buying g r o c e r i e s , paying b i l l s , washing c l o t h e s o r c l e a n i n g the 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, other c h i l d r e n , extended f a m i l y , or f r i e n d s ; 3. Care f o r s e l f , and pursue personal a s p i r a t i o n s ; o r 4. Earn a l i v i n g t o support s e l f and f a m i l y . In a d d i t i o n t o c a r e provided by nurses through the Nursing Respite Program, parents may use other forms o f c h i l d care t o accomplish these a c t i v i t i e s . When choosing t o u t i l i z e n u rsing r e s p i t e care o r another form o f c h i l d c are, parents c o n s i d e r the l e v e l o f back-up which they are ab l e t o p r o vide p o t e n t i a l c a r e g i v e r s while s t i l l accomplishing the above a c t i v i t i e s . To exemplify, when her n i e c e i s home to watch Kevin, L i s a Darwin i s able t o nap, knowing t h a t i f Kevin s e i z e s or becomes apneic, she w i l l be awakened by her 37 n i e c e . However, s i n c e her n i e c e does not 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, l e a v e home t o g e t g r o c e r i e s . R N - r e l a t e d f a c t o r s . W h i l e an i n - d e p t h d i s c u s s i o n o f d e s i r a b l e and u n d e s i r a b l e a t t r i b u t e s o f nurses p r o v i d i n g 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 beyond t h e scope o f t h i s r e p o r t , i t i s noteworthy t h a t p a r e n t s p e r c e i v e n u r s i n g knowledge and t e c h n i c a l s k i l l t o s e t nurses a p a r t from o t h e r p o t e n t i a l c a r e g i v e r s . P a r e n t s v a l u e agency e f f o r t s t o r e c r u i t nurses whose p r o f e s s i o n a l knowledge and 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. I n p a r t i c u l a r , t h e y v a l u e nurses who a r e f a m i l i a r w i t h t h e i r 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 f a c t o r s 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 nurse who demonstrates e f f e c t i v e s e i z u r e management s k i l l s which i n c o r p o r a t e 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 c h i l d . Drawing on p r o f e s s i o n a l knowledge, assessment s k i l l s , as w e l l as p r o b l e m - s o l v i n g and c r i s i s management a b i l i t i e s , t h e nurse's judgment i n managing 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 regard e d by p a r e n t s as an a s s e t . H i g h l y v a l u e d nurses a l s o demonstrate i n i t i a t i v e t o c a r e 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 a c q u i s i t i o n o f s o c i a l s k i l l s . 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 which p a r e n t s use 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 Program o p e r a t i o n s . For 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 hours 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 by a c h i l d and h i s o r her 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 . To i l l u s t r a t e t h e l a t t e r , T i n a Emery d i s c u s s e s her i n a b i l i t y t o use n u r s i n g r e s p i t e t o make lo n g - t e r m p l a n s i n her l i f e s i n c e an improvement i n Ben's c o n d i t i o n may 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 but i t can be t a k e n away from you as f a s t as you g e t i t . . . . So t h a t ' s e x t r a added 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, don't p l a n t o o much w i t h y o u r l i f e because, 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 would l i k e t o be a b l e t o work o u t s i d e t h e home f o r pay, but h e r 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 purpose i s f u r t h e r s t y m i e d by t h e program's m i s s i o n statement which p r e c l u d e s p a r e n t a l use o f 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 p a r e n t s ' a b i l i t 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 a t t h e i r c o nvenience. F l e x i b i l i t y i n s c h e d u l i n g , and a b i l i t y o f t h e n u r s i n g agency t o p r o v i d e nurses on s h o r t n o t i c e , i s p a r t l y d etermined by t h e a v a i l a b i l i t y o f i n d i v i d u a l n urses h i r e d 39 by the 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 p a r t i c u l a r c h i l d . While i n d i v i d u a l nurses may be more or l e s s f l e x i b l e o r w i l l i n g t o work a t the l a s t minute, i t i s u l t i m a t e l y the agency's r e s p o n s i b i l i t y t o meet the parent's scheduling needs. I f parents are unable t o schedule nursing r e s p i t e c a r e a t p r e f e r r e d times, then the agency may nego t i a t e work hours with i n d i v i d u a l nurses, o r h i r e other nurses t o meet parents' d e s i r e d scheduling needs. A l i c e Bentley d i s c u s s e s the importance o f f l e x i b l e s cheduling, but simultaneously r e v e a l s t h a t she negotiates her r e s p i t e schedule around the a v a i l a b i l i t y of agency nurses. A l i c e : The way the nursing works and s t u f f i t ' s a l l been r e a l l y good and you know they do i t around my schedule and not, not t h e i r s .... I f n e i t h e r of (the nurses) are a v a i l a b l e on a day then I've got, then 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 days are unstructured, so she i s able t o n e g o t i a t e her r e s p i t e schedule with the p r e f e r r e d work schedules of the agency nurses. In c o n t r a s t , E r i n and Frank 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 the nurses t o accommodate p a r e n t a l scheduling needs. They p r i m a r i l y schedule nursing r e s p i t e care a t n i g h t t o enable themselves t o s l e e p and t o minimize d i s r u p t i o n s of having a nurse i n 40 the house during waking hours. Since Frank's work day may begin e a r l y o r l a t e i n the morning, parents t r y t o schedule nursing r e s p i t e c a r e t o correspond with the hours when parents are s l e e p i n g . To accommodate l a s t minute scheduling requests by these parents, the n u r s i n g agency u t i l i z e s a pager system. E r i n : At one p o i n t [Frank] went on e a r l y s h i f t which meant we were g e t t i n g up a t th r e e t h i r t y . Frank: You know we had the freedom t o change t h a t time p r e t t y much a t w i l l . . . . E r i n : The nurses a t the beginning thought i t was a b i t unusual because we were having them come a t e i g h t a t ni g h t and l e a v i n g a t f o u r i n the morning and i t was an unusual s h i f t but they d i d n ' t mind a t a l l . . . . They d i d ask was t h i s going t o be f o r e v e r and (laughter) we s a i d no, i t s not f o r e v e r . . . . Frank: So b a s i c a l l y we've got t o l e t them know a t the l a s t minute so t h a t ' s convenient t o be ab l e t o do t h a t and know t h a t there's going t o be something 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 extent t o which parents engage i n pe 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 c a r e requirements as perc e i v e d by parents. The frequency of in n o v a t i o n may vary from low t o high, the 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 , and the extent from minor t o major. Parents who have p r e d i c t a b l e c h i l d c a r e needs coupled with a steady, competent source o f c h i l d c a r e may p r o a c t i v e l y schedule nursing 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 decreases t h e frequency w i t h which p a r e n t s must modify c h i l d c a r e p l a n s . The Fowlers 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 and low frequency i n n o v a t i o n s , b o t h o f which suggest p r o a c t i v e i n t e n t i o n a l i t y . On one hand, t h e agency 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 which t r a n s l a t e s t o low frequency 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 hand, t h e Fowlers r e q u i r e minor adjustments i n t h e s p e c i f i c t imes 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 o c c u r w i t h h i g h e r f r e q u e n c y . The r e l i a b i l i t y 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 f i n d 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, e i t h e r f i n d i n g s u b s t i t u t e c a r e g i v e r s o r a l t e r i n g p e r s o n a l p l a n s t o p r o v i d e c h i l d c a r e themselves. Thus, even when c h i l d c a r e requirements a r e p r e d i c t a b l e , p l a n n i n g c a r e i s a p e r p e t u a l endeavor. The e x t e n t t o which 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 a l s o v a r i e s w i t h t h e p r e d i c t a b i l i t y o f 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 r e q u i r e m e n t s , 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 nurses h i r e d by t h e n u r s i n g agency 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 o p t i o n s o t h e r t h a n t h e n u r s e s . 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 o r q u a n t i t y o f t e n e x e r t e x t e n s i v e e f f o r t t o f o r t i f y t h e i r c h i l d c a r e o p t i o n s . T h i s e f f o r t i s i n r e a c t i o n t o t h e p e r c e i v e d inadequacy of a v a i l a b l e c h i l d c a r e o p t i o n s . I n d e s c r i b i n g her e x t e n s i v e , f r e q u e n t e f f o r t s t o s e c u r e 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 evokes a war metaphor, u s i n g terms such as b a t t l e , f i g h t , ammunition, and v i c t o r y . P r i o r t o r e c e i v 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 , her s t o r y o f p e r p e t u a l i n n o v a t i o n s u g gests 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 major e x t e n t and h i g h f r e q u e n c y . A f u r t h e r i l l u s t r a t i o n o f i n t e n t i o n a l i t y i s p r o v i d e d by t h e C a r v e r s who were unsure about whether o r not t o u t i l i z e t h e 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 " l e a v e i t t o f a m i l y " (S4T1P10L44). However, t h e i r c h i l d c a r e arrangements f e l l t h r o u g h 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 w i t h p r e t e r m l a b o r . T h i s l e f t Jacob as t h e o n l y c a r e g i v e r competent t o meet Hugh's c a r e needs; as a r e s u l t o f c a r i n g f o r Hugh, Jacob l o s t h i s j o b , t h e f a m i l y ' s o n l y source o f income. W h i l e t h e C a r v e r 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 n u r s i n g r e s p i t e c a r e i n a r e a c t i v e manner. P e r p e t u a l I n n o v a t i o n S t r a t e g i e s : A D e c i s i o n - M a k i n g Framework Throughout t h e p r o c e s s o f p e r p e t u a l i n n o v a t i o n , p a r e n t s adopt a number o f s t r a t e g i e s . As s i t u a t i o n a l 43 f a c t o r s change h o u r l y , d a i l y , weekly, and monthly, p a r e n t s 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 emphasizing t h e 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 i n c l u d e : 1. P r i o r i t i z i n g p a r e n t a l a c t i v i t i e s r e q u i r i n g c h i l d c a r e . 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 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. 3. 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 . 4 . Matching c h i l d , p a r e n t , n u r s e , and o t h e r s i t u a t i o n a l f a c t o r s t o o p t i m i z e t h e c h i l d c a r e s i t u a t i o n . Together, t h e s e p a r e n t s t r a t e g i e s suggest a d e c i s i o n -making 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 i n n o v a t i o n . The g o a l o f t h i s p r o c e s s i s t o c r e a t e 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 m u t u a l l y b e n e f i c i a l t o both p a r e n t and c h i l d . P r i o r i t i z i n g p a r e n t a l a c t i v i t i e s r e q u i r i n g c h i l d c a r e . 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 which t h e y hope t h a t t h i s s e r v i c e w i l l 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 , such as s l e e p , household c h o r e s , and appointments, t o t h e a b s t r a c t , such as freedom, r e j u v e n a t i o n , and "having a l i f e " . 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 o f p a r e n t s s e r v e t o i l l u s t r a t e t h e p r o c e s s t h r o u g h which t h e y 44 p r i o r i t i z e 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 w i t h o t h e r p e r s o n a l demands and d e s i r e s . F o r p a r e n t s w i t h few c a r e g i v i n g o p t i o n s , p r i o r i t i e s o f t e n r e f l e c t b a s i c p e r s o n a l needs such 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 s u r v i v a l . F or example, T i n a Emery postponed 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 she and her son 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 used n u r s i n g r e s p i t e t i m e 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 you t o get t o t h o s e appointments. T i n a : Yeah, yeah, I d i d i t d u r i n g r e s p i t e times and not t h a t i t was much o f a break (l a u g h s ) because I was f r o z e n and s t u f f but i t was good and I've got 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 get 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 don't know what I'd do [emphasis added](S8T2P16L42-47). 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 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 may s u b o r d i n a t e t h e i r own needs t o t h e needs o f t h e i r c h i l d , unable t o f i n d c h i l d c a r e t o e n a b l e 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 put h e r own needs a s i d e . N u r s i n g r e s p i t e e n a b l e s T i n a t o p e r f o r m e s s e n t i a l a c t i v i t i e s t h a t she o t h e r w i s e would be unable t o do; t h e s e e s s e n t i a l a c t i v i t i e s t a k e p r i o r i t y . When d e c i d i n g how t o use t h e i r r e s p i t e t i m e , p a r e n t s who have more th a n one c h i l d c o n s i d e r t h e needs o f t h e i r o t h e r c h i l d r e n . F or example, June C a r v e r d e s c r i b e s how her 45 husband, Jacob, used r e s p i t e w h i l e she was h o s p i t a l i z e d w i t h p r e - t e r m l a b o r . S i n c e Hugh's c a r e r e q u i r e d equipment such as oxygen and f e e d i n g pumps, f a m i l y o u t i n g s were d i f f i c u l t . 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 spend 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. June: He would j u s t t a k e t h e k i d s , l i k e I s a i d because you c o u l d n ' t , w i t h Hugh you c o u i d n ' t go anywhere .... Because t h e o t h e r k i d s were a c t i v e , t h r o u g h my e x p e r i e n c e they were cooped up a l l t h e time so we would t a k e o f f w i t h them when t h e nurses come, w e l l t h e y were a b l e t o run i n t h e f i e l d s o r whatever ... blow o f f some a i r and you know t h e y ' d come home and th e y would be happy so everybody would be happy Xemphasis added] (S4T2P4L38-48). 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 t i me c o n t r i b u t e s t o harmonious f a m i l y environments N u r s i n g r e s p i t e c a r e f o r Hugh f r e e s Jacob t o p e r f o r m a c t i v i t i e s w i t h h i s o t h e r c h i l d r e n i n which Hugh cannot p a r t i c i p a t e . I n 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 developmental 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 which r e s p i t e c a r e might be used. I f c h i l d r e n a r e happy, t h e n p a r e n t s a re 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 example, E r i n and Frank Fowler 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 son, B i l l , from c a r i n g f o r h i s youngest s i s t e r E m i l y : E r i n : To be a b l e t o go out and f e e l t h a t whoever i s here c o u l d handle whatever 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 her but i t ' s one, not 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 her and two, i f a m e d i c a l c r i s i s happens ... i t ' s not 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 Frank v a l u e B i l l ' s w i l l i n g n e s s and a b i l i t y t o c a r e f o r h i s youngest 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 , t h e r e b y f r e e i n g B i l l t o pursue a d o l e s c e n t i n t e r e s t s . As p a r e n t s , t h e y f e e l t h a t B i l l ' s developmental growth i s a f a c t o r i n f l u e n c i n g t h e i r c h i l d c a r e d e c i s i o n s . A l t h o u g h B i l l p r o v i d e s E r i n and Frank w i t h a s o u r c e o f c h i l d c a r e which 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 B i l l , r a t h e r t h a n s u b o r d i n a t i n g B i l l ' s 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 needs. W h i l e p a r e n t s may 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 each week, t h e number o f hours f o r which t h e y a r e e l i g i b l e may be inadequate t o meet t h e i r p e r c e i v e d c h i l d c a r e needs. L i s a Darwin i l l u s t r a t e s t h e c h a l l e n g e o f s e t t i n g p a r e n t p r i o r i t i e s when the p r o v i d e d hours o f n u r s i n g r e s p i t e a r e f i n i t e . S i n c e L i s a and G a r t h a r e 4 7 saving money t o buy a house, her husband works long hours while she cares f o r Kevin. Except f o r nursing r e s p i t e , they have few c h i l d c a r e o p t i o n s . As her son Kevin's primary c a r e g i v e r , L i s a uses her r e s p i t e time t o manage the household, attend appointments and pursue personal a c t i v i t i e s l i k e reading, 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 on sl e e p . She f e e l s , however, t h a t the s i x t e e n hours o f nursing r e s p i t e per week do not enable her and her husband t o spend time together as a couple. Thus, she faces the choice of u s i n g nursing r e s p i t e time f o r chores and personal r e s t , o r spending time alone with her husband: L i s a : I don't f e e l t h a t i t ' s enough hours due t o the f a c t t h a t twelve out of the s i x t e e n hours I'm t a k i n g j u s t f o r myself alone, my husband i s not d e a l i n g with any of i t except f o r fou r hours a week .... And t h a t ' s , you know, because he's out working everyday so 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 parents, f o r myself, s i x t e e n hours i s great f o r me but I don't t h i n k i t would be a bad idea i f they threw i n an e x t r a four hours l i k e , you know, twenty hours a week so then the husband and w i f e can go out together not j u s t f o u r hours the one day .••• We want t o go out where we don't always have bur son with us ... and i t ' s not enough time f o r parents t o be together; i t ' s u s u a l l y one parent o r the other t h a t gets more of the r e s p i t e than the other one and i t ' s both o f them going through i t , not j u s t the one [S5T1 P5L51-P6L19]. For L i s a , i n a b i l i t y t o spend more time alone with her husband i s c l e a r l y a compromise, but household management, sl e e p , and personal r e j u v e n a t i o n take p r i o r i t y . L i s a d i f f e r e n t i a t e s between time f o r h e r s e l f and time with her 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 her 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 t i m e . 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 than a break i n Kev i n ' s c a r e g i v i n g r o u t i n e . I t r e p r e s e n t s an o p p o r t u n i t y t o f u l f i l l some p e r s o n a l g o a l l i k e m a i n t a i n i n g r e l a t i o n s h i p s w i t h o t h e r s o r c a r i n g 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 . A f t e r p r i o r i t i z i n g d e s i r e d 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 c o v e r 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 determine t h a t t h e i r a l l o t t e d n u r s i n g r e s p i t e hours a r e inadequate. Subsequently, t h e y c o n s i d e r t h e c a r e 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 , such as f a m i l y members o r day 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 Fowler both work f u l l t i m e , and have developed e l a b o r a t e c h i l d c a r e arrangements f o r E m i l y which i n c l u d e s her s i b l i n g s , in-home daycare p r o v i d e r s , and n u r s i n g r e s p i t e c a r e . F o r example, when E r i n and Frank d e l e g a t e E m i l y ' s c a r e t o her s i b l i n g s , t h e s e p a r e n t s p r o v i d e l e v e l s o f back-up i n kee 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 . A l t h o u g h c a r e by s i b l i n g s e n a b l e s E r i n and Frank t o l e a v e t h e house, t h e y always 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 be reached, and c a l l i n g home t o check on E m i l y and t h e o t h e r s . A c c o r d i n g t o t h e s e p a r e n t s , t h e ti m e t h a t t h e y spend away from home 49 when Emily's s i b l i n g s care f o r her i s q u a l i t a t i v e l y d i f f e r e n t than the time spent away when a nurse provides Emily with r e s p i t e c a r e : E r i n : Though the k i d s are very good and very capable of l o o k i n g a f t e r [Emily]', um, you always know th e r e c o u l d be a phone c a l l and the times we have used the r e s p i t e when [Frank] and I have gone out f o r an evening, I t h i n k maybe there's l e s s l i k e l i h o o d o f ( i n t e r r u p t i o n ) Frank: You can r e l a x E r i n : You can r e l a x a b i t more Frank: You can t o t a l l y r e l a x knowing t h a t someone i s here you know, not t h a t they're more competent because [ B i l l ] and [ C a r l a ] are p e r f e c t l y competent people E r i n : I t ' s a b i g r i s k , i f we wanted t o go out a whole e i g h t hour evening we would phone home, you know, over the evening and [ B i l l ' s ] never had a problem .... but you know we went out a couple o f times (using n u r s i n g r e s p i t e care) ... and were able t o r e l a x f o r the evening and i t was ... a f a i r d r i v e from here you know, arid we knew short of a r e a l medical c r i s i s , we wouldn't have t o come back and we've never had a c a l l from the nurses so I t h i n k t h a t way i t s unique as w e l l than from the other kind o f care (S10T2P20L45-P21L15). T h i s q uotation 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 peace of mind, thus i n f l u e n c i n g s i t u a t i o n s i n which parents schedule nursing r e s p i t e i n preference t o using other sources of c h i l d c a r e . Although E r i n and Frank use d i f f e r e n t sources of c h i l d c are, i t i s apparent t h a t these sources are 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 options are more or l e s s s u i t e d t o d i f f e r e n t s i t u a t i o n s . While g r e a t e r v a r i e t y i n c h i l d care options may f a c i l i t a t e p e r p etual inno v a t i o n by p r o v i d i n g parents with more choice, the competence of 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 the 50 t y p e s o f a c t i v i t i e s w hich p a r e n t s may pursue d u r i n g c h i l d c a r e t i m e . I n c o n t r a s t , some p a r e n t s , such as 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 i n h e r e n t i n h a v i n g nurses i n t h e home. When t h e C a r v e r s extended f a m i l y was unable t o meet Hugh's c a r e needs on t h e i r own, June and Jacob chose 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 l a s t r e s o r t . June: Because o f t h e c i r c u m s t a n c e s ... we needed t h e r e s p i t e we c o u l d n ' t depend on t h e f a m i l y even i f we, even i f we wanted t o , we c o u l d n ' t . . . . He heeded t h e nurses and not t h e l o v e , he needed, he needed a l s o , I mean l o v e but 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 ) . For June> n u r s i n g r e s p i t e i s something t o t o l e r a t e i n o r d e r t o p r o v i d e s a f e c a r e 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 ) even though i t ' s v e r y uncomfortable t o have somebody i n t h e home, you k i n d o f have t o g r a t e [ s i c ] your t e e t h and bear w i t h i t f o r your c h i l d ' s sake, you know, you have 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 r e l a t e d 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 a s s o c i a t e d i n v a s i o n o f p r i v a c y . Matching c h i l d , p a r e n t , n u r s e , and o t h e r s i t u a t i o n a l f a c t o r s t o o p t i m i z e c h i l d c a r e s i t u a t i o n . A f t e r p r i o r i t i z i n g d e s i r e d p a r e n t a l a c t i v i t i e s , 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 meet c h i l d c a r e needs, 51 and weighing the advantages of using nurses or other c a r e g i v e r s i n a given s i t u a t i o n , parents c o a l e s c e 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 both them and t h e i r c h i l d . I d e a l l y , both parent and c h i l d b e n e f i t from the c a r e g i v i n g experience. To i l l u s t r a t e , E r i n and Frank Fowler coordinate c h i l d care provided by daycare p r o v i d e r s , f a m i l y members, nurses, and parents t o maximize parent o p p o r t u n i t i e s t o work, sl e e p , run the household, and meet the needs of t h e i r c h i l d r e n . In a d d i t i o n t o scheduling r e g u l a r nursing r e s p i t e hours at night, they o r i g i n a l l y used t h e i r f l e x i b l e n u r s i n g r e s p i t e hours f o r couple time as w e l l as f a m i l y a c t i v i t i e s i n which Emily c o u l d not p a r t i c i p a t e . Due t o continued p a r e n t a l exhaustion, they l a t e r decided t h a t f l e x i b l e hours would be b e t t e r used at n i g h t , i n d i c a t i n g a s h i f t i n p a r e n t a l p r i o r i t i e s : E r i n : We had e i g h t ( f l e x i b l e hours), but what we d i d i s the e i g h t o f f l e x , because we weren't u s i n g i t c o n s i s t e n t l y because we don't go out a l l t h a t much . i . and because [ B i l l ] i s o f t e n a v a i l a b l e t o provide a few hours here and there and [Carla] when she's here sometimes t h a t we added t h a t onto Our r e g u l a r n i g h t s h i f t . Okay, the n i g h t s were more important t o us, so r i g h t now ... the 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 r e g u l a r R: Okay, so t h a t g i v e s you three nights (of nursing r e s p i t e care) and then you have an a d d i t i o n a l f o u r hours of f l e x . B i l l : Yeah. E r i n : . . . I f we f i n d we're not using i t , what they've suggested i s i f i n a two week p e r i o d I haven't used up e i g h t hours, then i n t h a t t h i r d week I add on one more nig h t because the n i g h t s are one of the roughest times f o r us. (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 changing s i t u a t i o n a l 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 o f f l e x i b i l i t y i n 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 . I t a l s o demonstrates t h e p e r p e t u a l n a t u r e o f t h e s e i n n o v a t i o n s ; w h i l e t h e t h r e e n i g h t s of r e s p i t e a r e c o n s i s t e n t l y s c h e d u l e d , t h e use o f f l e x time v a r i e s week t o week. Consequences o f P e r p e t u a l I n n o v a t i o n 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 n a t u r e . 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 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 c a r e . S u c c e s s f u l 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 p a r e n t , 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 . An e f f e c t i v e match en a b l e s p a r e n t s t o f u l f i l l r o l e s , r e s p o n s i b i l i t i e s , and d e s i r e s o t h e r t h a n t h o s e i n v o l v i n g d i r e c t c h i l d c a r e , w h i l e s i m u l t a n e o u s l y e n s u r i n g a s a f e c h i l d c a r e 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 Fowlers 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 a l l o w 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 which complements o t h e r sources o f c h i l d c a r e w h i l e e n a b l i n g 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 and a t work. F o r E r i n and Frank, 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 busy 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 unable 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 . I n t h e f o l l o w i n g q u o t a t i o n , t h e y respond t o a probe by t h e i n t e r v i e w e r which 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 programs 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 Program has had t h e g r e a t e s t impact on "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 because we've been up a l o t w i t h [ E m i l y ] but I t h i n k on us as a c o u p l e Frank: Yeah I t h i n k t h a t more E r i n : I t has t h e most impact because we're g e t t i n g s l e e p R: Yeah E r i n : And you can 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 decent n i g h t ' s s l e e p . Frank: For t h e f i r s t w h i l e t h e r e , we were run t o o much ragged 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, you know, um, i t was hard f o r t h e l o n g e s t time R: B e f o r e r e s p i t e Frank: We would wonder i f we, yeah, i f we were g o i n g t o be a b l e t o cope w i t h t h a t on an extended ... somehow we have t o have some h e l p {S10T2P17L11-38). N u r s i n g r e s p i t e c a r e p r o v i d e s t h e Fowlers w i t h t h e " 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 , w h i l e e n s u r i n g s a f e c a r e f o r t h e i r c h i l d . W h i l e n u r s i n g 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 enable p a r e n t s t o meet both 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 such m u t u a l l y b e n e f i c i a l c h i l d c a r e arrangements a r e l e s s s u c c e s s f u l . I n such c a s e s , p a r e n t s c r e a t e a match i n which 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 c a r e 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. S i n c e she f e e l s t h a t e i g h t hours i s inadequate, she a l s o uses c h i l d c a r e arrangements which she f e e l s p l a c e s her son a t r i s k . T i n a : I d i d have one l a d y who's not a hundred 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 break t h a t I need I have t o j e o p a r d i z e my son i n o r d e r t o have t h a t which i s r e a l l y t o o bad (S8T1P3L45-51). 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 which she and her son were a l l o t t e d , T i n a comments on her 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 c a r e s i t u a t i o n which she 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 no c h o i c e , i f I want t h e break and 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 o f Ben I have t o put him i n an environment where he's not s a f e . " (S8T1P8L9-12) T i n a e x p r e s s e s a p h i l o s o p h y on p a r e n t i n g which suggests t h e p o t e n t i a l f o r n u r s i n g r e s p i t e t o p r o v i d e p a r e n t s w i t h more than a break from c a r e g i v i n g , and t h e n c o n t r a s t s t h i s w i t h t h e r e a l i t y o f f i n d i n g c h i l d c a r e 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 your l i f e , l i k e whenever you have a c h i l d you know, don'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 have c h i l d r e n , um, t h a t ' s t r u e . But I don'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 have, 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 work ... t h e y s h o u l d be a b l e t o have somebody, l i k e I wouldn't send my normal c h i l d t o a 55 daycare t h a t I didn * t f e e l comfortable with ... but I have t o send my son with a l l h i s s p e c i a l needs t o a daycare t h a t I don't f e e l comfortable about .... I t h i n k t h a t there should be more ( c h i l d care options) f o r k i d s l i k e [Ben].... Make sure these k i d s are taken care of because i f they're not taken care of the parents are not taken care of and you're going t o end up with a whole bunch of these l i t t l e k i d s somewhere on your doorstep (S8T1P29L33-P30L2). Tin a p r e d i c t s t h a t without adequate c h i l d c are, p a r e n t a l exhaustion may 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 re 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 Darwin supports 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 the absence of in-home nursing r e s p i t e care, she would pursue 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 her awareness t h a t such care would be more expensive. L i s a : I t ' s p r e t t y c razy t h a t the government doesn't r e a l i z e t h a t l i k e here we a r e . There are a l o t of f a m i l i e s out there t h a t are 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 care f o r them themselves except f o r the odd hours t h a t a nurse can come i n and help them so they can r e s t and the government can't seem t o understand ... i t ' s cheaper (S5T2P13L36-43). Furthermore, while a p p l y i n g f o r more nu r s i n g r e s p i t e hours, L i s a s t a t e s , " i f I don't get those e x t r a e i g h t hours t h e r e w i l l come a time when I won't be able t o care f o r myself and I won't be a b l e t o care f o r him" (S5T2P33L48-50). L i s a i m p l i e s t h a t i f c u r r e n t s i t u a t i o n a l f a c t o r s p e r s i s t , f u t u r e innovation s t r a t e g i e s w i l l r e s u l t i n a c h i l d care s i t u a t i o n which compromises both her own needs and those of her c h i l d . 56 G i v e n t h e encompassing n a t u r e o f t h e i r c a r e g i v i h g r e s p o n s i b i l i t i e s i n t h e absence o f adequate c h i l d c a r e , i t i s i n t e r e s t i n g t o note t h a t b o t h T i n a Emery and L i s a Darwin 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 . L i s a s t a t e s "1 haven't r e a l l y had a l i f e s i n c e he's come home" (S5T1P4L54-55). I n t h e f o l l o w i n g q u o t a t i o n , T i n a echoes t h i s s e n t i m e n t . T i n a : I t would be g r e a t i f I c o u l d go out and get a p a r t t i m e j o b , i t would be g r e a t , i t would be g r e a t t h e r a p y f o r me, i t would be good f o r [Ben] because I know when I worked b e f o r e and I came home I was j u s t so g l a d t o see him and I d i d n ' t mind, 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 break. T i n a : I had a l i f e (emphasis added) (S8T1P19L2-11). Inadequate access t o n u r s 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 s e v e r e l y l i m i t s t h e scope of p a r e n t a l i n n o v a t i o n s t r a t e g i e s . 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 o f p a r e n t s t o p r o v i d e a s a f e c a r e environment f o r t h e i r c h i l d w hich s i m u l t a n e o u s l y e n a b l e s them t o pursue a c t i v i t i e s o t h e r than d i r e c t c a r e g i v i n g . As a r e s u l t , p a r e n t s p e r s i s t i n c a r i n g f o r t h e i r c h i l d , s u b o r d i n a t i n g t h e i r own needs 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. Both T i n a and L i s a p r e d i c t t h a t p a r e n t a l e x h a u s t i o n may e v e n t u a l l y 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 . I f t h i s happens, 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 o p t i o n s which they f e e l compromise t h e i r c h i l d ' s needs, o p t i o n s which may be more c o s t l y t o s o c i e t y t h a n n u r s i n g r e s p i t e and o t h e r forms o f p u b l i c l y funded c h i l d c a r e . 57 Summary To r e i t e r a t e , t h e term p e r p e t u a l i n n o v a t i o n d e s c r i b e s t h e ongoing 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 . T h i s t e rm c a p t u r e s t h e c o n t i n u a l c r e a t i v i t y w i t h which p a r e n t s approach t h e c h a l l e n g e o f p r o v i d i n g a s a f e c h i l d c a r e 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 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 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 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 c h i l d , p a r e n t s , n u r s e s . 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 , and s o u r c e s o f c h i l d c a r e o t h e r t h a n n u r s i n g r e s p i t e . These f a c t o r s i n f l u e n c e t h e f r e q u e n c y , i n t e n t i o n a l i t y , and e x t e n t o f p a r e n t i n n o v a t i o n s . S t r a t e g i e s used by p a r e n t s engaged i n p e r p e t u a l i n n o v a t i o n i n c l u d e p r i o r i t i z i n g d e s i r e d p a r e n t a l 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 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 needs, w e i g h i n g 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 c o a l e s c i n g s i t u a t i o n a l f a c t o r s t o o p t i m i z e t h e c h i l d c a r e s i t u a t i o n . Together, t h e s e s t r a t e g i e s o u t l i n e a d e c i s i o n - m a k i n g p r o c e s s t h r o u g h which p a r e n t s c o n t i n u a l l y p l a n and r e - p l a n c h i l d c a r e . I f t h e s e s t r a t e g i e s a r e s u c c e s s f u l , 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 c a r e i n a manner t h a t b e n e f i t s b o t h t h e 58 c h i l d and themselves. 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 needs ar e compromised when he o r she i s p l a c e d i n a c h i l d c a r e s i t u a t i o n which 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 her w e l l -b e i n g . P a r e n t s needs may be compromised t o a p o i n t where they 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 own. I n Chapter 4 , study f i n d i n g s on p e r p e t u a l i n n o v a t i o n a r e d i s c u s s e d w i t h i n t h e c o n t e x t o f 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 d e c i s i o n - m a k i n g p r o c e s s r e f l e c t e d i n th e s e f i n d i n g s i s r e l a t i v e l y u n e x p l o r e d . S i n c e few r e s e a r c h a r t i c l e s r e l a t i n g t o t h i s d e c i s i o n - m a k i n g p r o c e s s were found, t h e f o l l o w i n g d i s c u s s i o n emphasizes how study f i n d i n g s l i n k w i t h c u r r e n t knowledge 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 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 . 59 Chapter 4 D i s c u s s i o n 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 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 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 f a c t o r s . T h i s p r o c e s s i s c a p t u r e d 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 which may be used 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 t h e o r y b e i n g generated i n t h e e v a l u a t i o n s t u d y : 1. Due t o changing 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 ongoing 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. 2 . 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 c a r e 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 nurse's p r o f e s s i o n a l knowledge, s k i l l , and a b i l i t y t o handle a m e d i c a l 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 which 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 Program e l i g i b i l i t y r equirements do not r e f l e c t t h e c h i l d ' s c a r e 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 from t h e program a t any t i m e , p a r e n t s who want t o work, 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 which t h e y need c h i l d c a r e a r e unable t o count on n u r s i n g r e s p i t e f o r c a r e . 60 6. Parents who f e e l t h a t they are r e c e i v i n g inadequate n u r s i n g r e s p i t e care hours may be unsure of other c h i l d care options a v a i l a b l e t o them. 7. Parents want t o schedule nursing r e s p i t e care a t t h e i r convenience. Nursing agencies which provide adequate s t a f f and f l e x i b l e s cheduling on s h o r t n o t i c e meet p a r e n t a l needs b e t t e r . 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 parents 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 . 9. While general r e s p i t e care i s o f t e n d e s c r i b e d i n the l i t e r a t u r e as a temporary r e l i e f from 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 , 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 use of r e s p i t e time. For example, time f o r s e l f i s 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 spouse. 10. 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 time 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 nurse versus a c a r e g i v e r who i s not a nurse. Emerging from these f i n d i n g s i s a framework d e s c r i b i n g the decision-making process of parents who have access t o p e d i a t r i c nursing r e s p i t e c a r e . 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 i s s u e s i n r e s p i t e care such as r i g i d program e l i g i b i l i t y requirements, inadequate c a r e g i v e r s k i l l s , and v a r i a t i o n s i n models of r e s p i t e c a r e d e l i v e r y (Ahmann, 1986; Cohen, 1982; Cohen & Warren, 1985; O'Connor, Vander P l a a t s , & Betz, 1992; Upshur, 1982). Study f i n d i n g s d e s c r i b e d i n 61 t h i s r e p o r t c o n t r i b u t e 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 th e g e n e r a l r e s p i t e c a r e 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 i s s u e s i n r e s p i t e c a r e need a t t e n t i o n by program p l a n n e r s and r e s e a r c h e r s , t h i s s t u d y b e g i n s t o i l l u m i n a t e how t h e s e i s s u e s i n f l u e n c e c a r e g i v i n g d e c i s i o n s made by i n d i v i d u a l s s e e k i n g r e s p i t e c a r e s e r v i c e s . Second, t h e s e f i n d i n g s c o n t r i b u t e t o t h e l i m i t e d body o f knowledge on in-home n u r s i n g r e s p i t e c a r e . U n d e r s t a n d i n g how r e c i p i e n t s use t h i s s p e c i f i c t y p e o f 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 d e l i v e r y o f a range o f r e s p i t e c a r e s e r v i c e s r e s p o n s i v e t o t h e needs o f r e c i p i e n t s . T h i r d , t h e s e f i n d i n g s h i g h l i g h t r e s p i t e c a r e i s s u e s s p e c i f i c t o two p o p u l a t i o n s : (a) c h i l d r e n and (b) i n d i v i d u a l s w i t h m e d i c a l l y complex c o n d i t i o n s . F i n d i n g s i n d i c a t e t h a t a t t r i b u t e s unique t o c h i l d r e n as w e l l as t h o s e unique t o i n d i v i d u a l s 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 n f l u e n c 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 o f p a r e n t s a r r a n g i n g r e s p i t e c a r e . C h i l d Care W h i l e c o n c e p t u a l d i f f e r e n c e s between p e d i a t r i c r e s p i t e c a r e ( n u r s i n g o r non-nursing) and c h i l d c a r e e x i s t , b o t h p r o v i d e p a r e n t s w i t h t h e a b i l i t y t o engage i n a c t i v i t i e s o t h e r t h a n d i r e c t c a r e f o r t h e i r c h i l d . The importance o f examining 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 form o f c h i l d 62 care i s supported by Thompson's (1993) work, which explores the process through which working mothers make c h i l d care d e c i s i o n s when a normally healthy c h i l d becomes too i l l t o attend daycare. Using a p r e t e s t e d i n t e r v i e w schedule, Thompson (1993) asked 20 employed mothers t o d e s c r i b e a recent i n c i d e n t i n which t h e i r c h i l d r e n were too i l l t o attend daycare. Questions probed informants about advantages and disadvantages of other c h i l d care o p t i o n s , and the mother's preferences about a l t e r n a t i v e c h i l d care 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 of s i t u a t i o n a l f a c t o r s i n c l u d i n g s e v e r i t y of the c h i l d ' s i l l n e s s , r e l a t i v e pros and cons of a v a i l a b l e o p t i o n s , and the mother's job f l e x i b i l i t y . Thompson then presents a model o u t l i n i n g the decision-making process used by mothers t o arrange c h i l d care f o r t h e i r s i c k c h i l d . Despite the d i f f e r e n t u n i t s of a n a l y s i s (mothers versus p a r e n t s ) , r e s u l t s i n d i c a t e a s t r i k i n g s i m i l a r i t y between the decision-making process presented by Thompson (1993), and the decision-making process d e s c r i b i n g perpetual i n n o v a t i o n . For example, when s o l v i n g c h i l d care dilemmas, parents i n both s t u d i e s c o n s i d e r (a) the a v a i l a b i l i t y of c a r e g i v e r s competent t o care f o r t h e i r " s i c k " (Thompson) c h i l d , (b) the nature of the c h i l d ' s c o n d i t i o n and need f o r medical management, (c) the congruence between the a b i l i t i e s of d i f f e r e n t p o t e n t i a l ) 63 c a r e g i v e r s and the c h i l d ' s c a r e needs, (d) the p e r c e i v e d advantages and disadvantages of d i f f e r e n t care options, (e) the importance and f l e x i b i l i t y of the parenting a c t i v i t y f o r which c h i l d care i s r e q u i r e d , ( f ) outcomes of p r i o r c h i l d care 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 (g) the r e l a t i v e importance of these outcomes f o r the c h i l d and parent. Thompson's (1993) model a l s o addresses f a c t o r s t o which my f i n d i n g s a l l u d e , but which have not been developed. These f a c t o r s i n c l u d e the a b i l i t y of p o t e n t i a l c a r e g i v e r s t o meet the c h i l d ' s emotional needs, as w e l l as the economic impact of each c h i l d care o p t i o n . In view of t h e i r importance i n Thompson's study, I may d i r e c t f u t u r e t h e o r e t i c a l sampling t o explore these i s s u e s 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 C h i l d r e n with Chronic Conditions Although t h e r e appears t o be no l i t e r a t u r e 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 parents u t i l i z i n g r e s p i t e or other forms of 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 or other c h r o n i c c o n d i t i o n s , i would l i k e t o p l a c e my study f i n d i n g s w i t h i n the context of research on p a r e n t i n g such c h i l d r e n . As d e s c r i b e d e a r l i e r (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 "family" 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 . Study f i n d i n g s on p e r p e t u a l innovation f i t i n the framework category 64 d e s c r i b i n g the 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) of study. Perpetual i n n o v a t i o n , the process through which parents arrange c h i l d c a r e 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 research on parent management behaviors i n the presence of p e d i a t r i c c h r o n i c i t y . K n a f l and D e a t r i c k (1990) present 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 of the model which they c a l l management behaviors (Deatrick & K n a f l , 1990). Grounded i n symbolic i h t e r a c t i o n i s m , the Family Management S t y l e model inc o r p o r a t e s (a) the 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 behaviors r e l a t e d t o 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 , 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 de s c r i b e s the "family" p e r s p e c t i v e on management s t y l e s i n terms of averaged i n d i v i d u a l p e r s p e c t i v e s . Within t h i s model, management behaviors are e x p l i c a t e d i n terms of the f o l l o w i n g d e f i n i n g a t t r i b u t e s : (a) the goal of the behavior, (b) i t s u n d e r l y i n g conceptual dimension, (c) the person implementing the behavior, and (d) the focus of the behavior (Deatrick & K n a f l , 1990). D e a t r i c k and K n a f l (1990) developed the concept o f management behaviors through a review of SAPA research. For example, they incorporated (a) K r u l i k ' s (1980) work on norma l i z i n g t a c t i c s used by parents t o minimize p e r c e i v e d 65 d i f f e r e n c e s between t h e i r c h i l d and other s i b l i n g s o r peers, (b) Anderson's (1981) work on f a m i l y l i f e s t y l e adjustments when a f a m i l y member has a c h r o n i c c o n d i t i o n , and (c) D e a t r i c k , K n a f l , and Walsh's (1988) work on adjustments made by f a m i l i e s t o accommodate a c h i l d ' s c h r o n i c c o n d i t i o n i n t o d a i l y l i f e . Given these examples, i t seems p l a u s i b l e t h a t p e r p e t u a l i n n o v a t i o n s t r a t e g i e s may be understood as management behaviors used by parents of 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 t o arrange c h i l d care b e n e f i t i n g both parent and c h i l d . The symbolic i n t e r a c t i o n i s t underpinnings o f both the pe r p e t u a l i n n o v a t i o n study and K n a f l and De a t r i c k ' s (1990) f a m i l y management s t y l e model lends f u r t h e r credence t o t h i s suggestion. Comprehensive Respite Care D e l i v e r y Having placed the concept of pe r p e t u a l i n n o v a t i o n i n t h e o r e t i c a l context with l i t e r a t u r e r e l a t e d t o pa r e n t i n g c h i l d r e n with c h r o n i c c o n d i t i o n s , t h i s s e c t i o n 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 care d e l i v e r y . On both 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 are 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 the d e l i v e r y o f 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 s , i n c l u d i n g nursing r e s p i t e care, t o b e t t e r serve both c h i l d r e n and t h e i r parents. 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 d e s c r i b e these p r o j e c t s . 66 L o c a l l y , a task f o r c e i n Greater V i c t o r i a r e c e n t l y conducted a review of famil y - c e n t e r e d community-based support s e r v i c e s , i n c l u d i n g the Nursing Respite Program, f o r f a m i l i e s c a r i n g f o r c h i l d r e n with p h y s i c a l o r developmental " d i s a b i l i t i e s " a t home (Community Respite Care P r o j e c t , 1993). The V i c t o r i a task f o r c e conducted surveys and interviews with f o u r groups of stakeholders, i n c l u d i n g f a m i l i e s , f a m i l y - s e r v i n g agencies, government r e p r e s e n t a t i v e s , and the general community, on 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 care s e r v i c e d e l i v e r y and u t i l i z a t i o n i n Greater V i c t o r i a . Findings from t h i s p r o j e c t a re l i m i t e d by the instruments used t o c o l l e c t the survey data. Developed by the task f o r c e , these instruments were not p i l o t t e s t e d , and subsequently informants reported t h a t some questions were unc l e a r (Community Respite Care P r o j e c t , 1993). N a t i o n a l l y , the 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 , the Canadian P u b l i c Health A s s o c i a t i o n , and Home Support Canada have j u s t completed phase one of a three phase c o l l a b o r a t i v e p r o j e c t intended t o respond t o the home-based care needs of c h i l d r e n with "medically 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 (Home Support Canada, 1995). P r o j e c t Phase One sought t o i d e n t i f y (a) c u r r e n t sources of in-home p e d i a t r i c care f o r these c h i l d r e n , (b) perc 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 parents confront when a c c e s s i n g s e r v i c e s , (c) s t r a t e g i e s t o 67 improve t h e s e s e r v i c e s . Data were c o l l e c t e d from 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 f r a g i l e c o n d i t i o n s as w e l l as o t h e r key i n f o r m a n t s , u s i n g m a i l e d s u r v e y s , t e l e p h o n e 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 f l e x i b i l i t y 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 oth 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 from which p a r e n t s may access a range o f r e s p i t e c a r e s e r v i c e s . These recommendations suggest an i m p l i c i t v a l u e which promotes p a r e n t a l ease and independence i n a c c e s s i n g and u t i l i z i n g r e s p i t e c a r e s e r v i c e s . W h i l e my study f o c u s e s on n u r s i n g r e s p i t e c a r e , t h e manner i n which 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 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 o p t i o n s suggests t h a t c o o r d i n a t e d 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 may f a c i l i t a t e t h e p r o c e s s o f p e r p e t u a l i n n o v a t i o n . O f f e r i n g p a r e n t s 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 enable 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 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 c a r e 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 di s a d v a n t a g e s 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 both 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 l o c a t e s t u d y f i n d i n g s w i t h i n e x i s t i n g b o d i e s of r e s e a r c h . N o n e t h e l e s s , t h i s d i s c u s s i o n d e s c r i b e s s t u d y f i n d i n g s w i t h i n t h e c o n t e x t o f 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 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 . Furthermore, i t addresses how s t u d y f i n d i n g s p r o v i d i n g t h e emic p e r s p e c t i v e may i n f l u e n c e p o l i c y d e c i s i o n s r e g a r d i n g p e d i a t r i c r e s p i t e c a r e d e l i v e r y . 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 o f t h e l a r g e r e v a l u a t i o n s t u d y w i l l p r o v i d e an o p p o r t u n i t y t o e l a b o r a t e 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 l i t e r a t u r e on 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 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 . 69 Chapter 5 I m p l i c a t i o n s Study f i n d i n g s p r e s e n t e d 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 m o d i f i c a t i o n s t h a t p a r e n t s 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 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 framework which 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 t h e d e l i v e r y o f 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 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 and p o s s i b l y o t h e r forms o f c h i l d c a r e s e r v i c e s . I d e s c r i b e t h e s e i m p l i c a t i o n s acknowledging 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 undergo r e f i n e m e n t and v a l i d a t i o n w i t h 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 , 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 framework may be used t o educate nurses who 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 t h e p r o c e s s through which p a r e n t 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 . T h i s u n d e r s t a n d i n g w i l l s e n s i t i z e nurses t o t h e broader c o n t e x t i n which they p r o v i d e c a r e . A l t h o u g h nurses c a r e f o r t h e c h i l d , t h i s c a r e i s p r o v i d e d t o enable p a r e n t s to f u l f i l l a c t i v i t i e s o t h e r t h a n d i r e c t c a r e o f t h e i r c h i l d . A p p r e c i a t i n g t h e manner i n which p a r e n t s s c h e d u l 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 c h i l d c a r e may enable nurses t o enact t h e i r 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 a c t i v i t i e s . 70 Second, t h i s d e c i s i o n - m a k i n g framework may be used by a g e n c i e s d e l i v e r i n g n u r s i n g r e s p i t e c a r e t o p r o v i d e t h e s e s e r v i c e s i n a manner which b e t t e r responds t o r e s p i t e needs of p a r e n t s . For example, t h e framework i l l u s t r a t e s t h a t p a r e n t s 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 c o n s i d e r a v a r i e t y o f 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 p a r e n t s w i t h t h e f l e x i b i l i t y t o u t i l i z e r e s p i t e c a r e i n r e l a t i o n t o t h e s e changing v a r i a b l e s . Study f i n d i n g s r e v e a l two agency s t r a t e g i e s which p r o v i d e p a r e n t s w i t h t h i s f l e x i b i l i t y : (a) a p a g i n g system, and (b) adequate 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 s p e c i f i c c h i l d . 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 r e s t r u c t u r e t h e d e l i v e r y o f a l l 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 s , t h i s framework suggests t h a t u n d e r s t a n d 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 through which p a r e n t s u t i l i z e r e s p i t e c a r e w i l l 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 c a r e 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. Responsive d e l i v e r y o f r e s p i t e c a r e would be adapted t o t h e p e r c e i v e d r e s p i t e needs o f p a r e n t s r a t h e r t h a n e x p e c t i n g p a r e n t s t o adapt t o i n h e r e n t l i m i t s o f c u r r e n t r e s p i t e c a r e d e l i v e r y . F u r t h e r r e s e a r c h i s r e q u i r e d t o 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 c a r e p r o v i d e r s t o make informed d e c i s i o n s about r e s t r u c t u r i n g t h e d e l i v e r y o f 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 s . P a r e n t s who u t i l i z e p e d i a t r i c n u r s i n g r e s p i t e 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 which a r e a c c e s s i b l e , f l e x i b l e , and a d a p t a b l e t o a v a r i e t y o f 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 c a r e d e c i s i o n s . 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 t o meet t h e i r c h i l d c a r e needs. Whi l e p a r e n t s i d e n t i f y how d i f f e r e n t 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 needs, f u r t h e r r e s e a r c h i s needed t o examine how t h i s i n p u t from p a r e n t s might be i n c o r p o r a t e d t o improve 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 s . I n a d d i t i o n , f u t u r e r e s e a r c h needs t o f o c u s on t h e e x t e n t t o which 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 th e c h i l d c a r e needs of p a r e n t 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 . 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 o f 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 w i t h i n d i f f e r e n t models, and p e r c e i v e d gaps i n p e d i a t r i c r e s p i t e c a r e d e l i v e r y . To augment such 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 and outcomes o f d i f f e r e n t r e s p i t e c a r e models. W h i l e c u r r e n t r e s e a r c h s u p p o r t s t h e need f o r community-based 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 which r e s p i t e models p r o v i d e t h e g r e a t e s t b e n e f i t t o program r e c i p i e n t s a t t h e most j u s t i f i a b l e c o s t . G i v e n c u r r e n t f i s c a l c o n s t r a i n t s , such i n f o r m a t i o n would be i n v a l u a b l e i n m a x i m i z i n g t h e d e l i v e r y o f 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 s w h i l e m i n i m i z i n g t h e a s s o c i a t e d c o s t s . 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 and 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 t h e s e s e r v i c e s . The r e s u l t s o f such r e s e a r c h c o u l d a s s i s t p o l i c y m a k e r s a t l o c a l , p r o v i n c i a l , and n a t i o n a l l e v e l s i n promoting t h e development o f a comprehensive model o f p e d i a t r i c r e s p i t e c a r e d e l i v e r y . 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 c a r e s i t u a t i o n . I n a d d i t i o n , i t i s c o n c e i v a b l e t h a t b e t t e r 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 c a r e s e r v i c e s might s t r e a m l i n e a d m i n i s t r a t i o n , t h e r e b y d e c r e a s i n g o v e r a l l c o s t s o f p e d i a t r i c r e s p i t e c a r e . C o n c l u s i o n 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 by p a r e n t s w i l l i n g and a b l e t o c a r e f o r t h e s e c h i l d r e n a t home. Yet 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 c a r e a v a i l a b l e t o t h e s e p a r e n t s i s w e l l documented. Wi t h an i n c r e a s i n g emphasis on community h e a l t h c a r e and f i s c a l r e s t r a i n t i n B r i t i s h Columbia, 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 energy c a r i n g f o r t h e s e c h i l d r e n . T h i s study b e g i n s t h e o r y g e n e r a t i o n i n a r e l a t i v e l y u n e x p l o r e d a r e a ; t h e d e c i s i o n - m a k i n g p r o c e s s through which p a r e n t 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 a form 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 term p e r p e t u a l i n n o v a t i o n . The s i g n i f i c a n c e o f u n d e r s t a n d i n g p e r p e t u a l i n n o v a t i o n , t h e ongoing m o d i f i c a t i o n s through which 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 arrange c h i l d c a r e , i s p o t e n t i a l l y f a r - r e a c h i n g . H e a l t h c a r e p r o v i d e r s have a r e s p o n s i b i l i t y t o ensure through 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 a r e adequate. By u n d e r s t a n d i n g t h e p r o c e s s through which p a r e n t s 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 , nurses 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 c r e a t e s e r v i c e s which enable p a r e n t s t o a c h i e v e p e r s o n a l g o a l s , w h i l e a s s u r i n g a s a f e c a r e environment f o r t h e i r c h i l d . 74 References Ahmann, E. (1986). An annotated b i b l i o g r a p h y on r e s p i t e care f o r c h i l d r e n and f a m i l i e s . C h i l d r e n ' s Health Care. 17. 112-120. Anderson, J . M. (1981). The s o c i a l c o n s t r u c t i o n o f the i l l n e s s experience: F a m i l i e s with a c h r o n i c a l l y i l l c h i l d . J o u r n a l of Advanced Nursing. 6j 427-434. Anderson, J . M. & E l f e r t , (1989). Managing c h r o n i c i l l n e s s i n the f a m i l y : Women as c a r e t a k e r s . 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(1980). S u c c e s s f u l "normalizing" t a c t i c s of parents 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 of Advanced Nursing, 5_, 573-578. O'Connor, P., Vander P l a a t s , S., & Betz, C. L. (1992). Respite care s e r v i c e 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 i n C a l i f o r n i a . J o u r n a l of P e d i a t r i c Nursing. 7_, 269-275. P l e s s , I. B., & P e r r i n , J . M. (1985). Issues common t o a v a r i e t y o f i l l n e s s e s . In N. Hobbs & J . M. P e r r i n (Eds.), Issues i n the care of c h i l d r e n with c h r o n i c i l l n e s s (pp. 41-60). San F r a n c i s c o : Jossey-Bass. Robinson, C. (1985). Double b i n d : A dilemma f o r parents of 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 Nursing, 11., 112-115. Sherman, B. R. (1995). Impact of home-based r e s p i t e care on f a m i l i e s of c h i l d r e n with 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 Health Care. 24 (10), 33-45. 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J o u r n a l of Marriage and the Family. 49, 65-70. 77 Thompson, P. J . (1993). Day care f o r i l l c h i l d r e n : An employed mother's dilemma. Issues i n Comprehensive P e d i a t r i c Nursing. 16. 77-89. Upshur, C. C. (1982). Respite care f o r mentally retarded and other d i s a b l e d p o p u l a t i o n s : Program models and fam i l y needs. Mental Retardation, 20, (1) 2-6. 78 Appendix 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 Family: We are i n t e r e s t e d i n e v a l u a t i n g the e f f e c t i v e n e s s of the BC Nursing Respite Program, p a r t i c u l a r l y from the p o i n t o f view of those 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 . T h i s e v a l u a t i o n research i s being c a r r i e d out independent of the a d m i n i s t r a t i o n of the Program and the M i n i s t r y o f Health. Only f a m i l i e s new t o the Nursing Respite Program t h i s year can p a r t i c i p a t e , and we would l i k e t o i n c l u d e your f a m i l y . One d i r e c t b e n e f i t t o you w i l l be reimbursement of your time, and i n d i r e c t l y , the information you provide w i l l help nurses and M i n i s t r y o f Health planners 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 research have repo 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 about the 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 you agree 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) Linda F l a t o , an experienced nurse researcher, would v i s i t your home three (3) times i n order t o observe and t a l k with you about what i t i s l i k e f o r your f a m i l y t o need and use nursing r e s p i t e s e r v i c e s : once before the s e r v i c e s begin, again 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 . 2) Parents would complete seven (7) paper-and-pencil q u e s t i o n n a i r e s each time. Two or three of these q u e s t i o n n a i r e s are a l s o a v a i l a b l e i n s h o r t e r c h i l d r e n ' 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 conversations may be tape-recorded and t r a n s c r i b e d l a t e r and Lin d a would a l s o w r i t e some notes about her observations about your f a m i l y ' s responses t o nur s i n g r e s p i t e c a r e . 4) Linda w i l l r e c o r d some info r m a t i o n from your 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 ti m i n g of each 2-4 hour v i s i t would be arranged at your f a m i l y ' s convenience. 6) You w i l l be asked t o keep a b r i e f r e c o r d of your experiences with the Nursing Respite Program and i t s a s s o c i a t e d costs ( i n d i a r y form). 7) A f t e r each of the three data c o l l e c t i o n periods i n which you take p a r t , you w i l l r e c e i v e four (4) hours e x t r a r e s p i t e c a r e . 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 untary, and you can withdraw a t any time. Refusing 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 the care you and your f a m i l y r e c e i v e . You can ask any questions about the research a t any time before, during, o r a f t e r the study. A l l information 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 you 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 our study. Please c a l l one of us i f you have any questions. I f we don't hear from you by two weeks a f t e r you 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 give you a c a l l t o o b t a i n your d e c i s i o n . Yours s i n c e r e l y , Linda Flato,BSN Research A s s i s t a n t 727-6081 (home) V i r g i n i a Hayes,RN,PhD A s s i s t a n t P r o f e s s o r 822-7477 ( o f f i c e ) Pamela Otterman, MSN Nurse Consultant 261-3093 ( o f f i c e a t home) 8 0 Appendix B: Consent /Assent t o P a r t i c i p a t e i n Research P r o j e c t Project T i t l e : E v a l u a t i o n of the BC Nursing Respite Program Purpose: Jinny Hayes, RN, PhD, from the School of Nursing a t the U n i v e r s i t y of B r i t i s h Columbia and Pamela Otterman, RN, MSN, a nursing c o n s u l t a n t a s s o c i a t e d with the Nursing Respite Program are conducting a study t o evaluate the outcomes of the BC M i n i s t r y of Health's Nursing Respite Program (NRP) f o r c h i l d r e n with complex h e a l t h c o n d i t i o n s . Procedures: I f we agree t o p a r t i c i p a t e i n the study, e i t h e r Myra Percy or L i n d a F l a t o (the nurse research a s s i s t a n t s ) w i l l v i s i t our home three (3) times i n order t o observe and t a l k with us about what i t i s l i k e f o r our f a m i l y t o need and use nursing r e s p i t e care s e r v i c e s . We w i l l complete seven (.7) paper-and-p e n c i l q u e s t i o n n a i r e s each time: once before our f a m i l y begins 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 again 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 conversations may be tape recorded 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 notes about her 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 information from our c h i l d ' s in-home r e s p i t e care c h a r t , from the NRP o f f i c e r e c ords, At Home Program, and In-School Support records. We are being asked t o keep a d i a r y about our experiences with the 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 of v i s i t s w i l l be arranged at our f a m i l y ' s convenience, and w i l l l a s t 2-4 hours each. We can ask any questions about the research a t any time before, d u r i n g , o r a f t e r the study. Risks/Discomforts: T a l k i n g about our 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 a t times. However, we are f r e e t o share whatever aspects of our f a m i l y l i f e we wish. We may r e f u s e t o answer any question at any time without any repercussions f o r our f a m i l y or i n d i v i d u a l members or our c h i l d ' s c a r e . Having another nursing p r o f e s s i o n a l i n our home may present an a d d i t i o n a l t h r e a t t o our p r i v a c y and w i l l r e q u i r e our cooperation, but s e v e r a l precautions w i l l be taken t o p r o t e c t our 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 , data summaries, d i a r i e s , tapes, and w r i t t e n m a t e r i a l s are i d e n t i f i e d by a number known onl y t o the researchers and the research a s s i s t a n t , not by our names. A l l these are kept i n a locked c a b i n e t and are o n l y f o r the researchers' 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 not be made evident i n any p u b l i c a t i o n or r e p o r t , and any small segments of our recorded conversations used i n p r i n t w i l l 82 o b s e r v a t i o n , or completion o f a form at any time, without repercussions of any k i n d f o r our f a m i l y . Consent We w i l l be given a copy of t h i s consent/assent t o keep. I/we consent t o p a r t i c i p a t e : Signature of Parent Signature of Parent Signature of Researcher • Date Name of c h i l d who has r e c e i v e d developmentally a p p r o p r i a t e information about the study, but i s not able t o give h i s / h e r own consent I consent/do not consent: Signature of Parent Signature of C h i l d Name of c h i l d who has r e c e i v e d developmentally appropriate i n f o r m a t i o n about the study, but i s not a b l e t o g i v e h i s / h e r own consent I consent/dp not consent: ^Signature of Parent Signature of C h i l d 83 When study results are available, I/we wish to receive a brief report. These are to be mailed to: Name(s) Street Address City/Town Code 

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