Applied Science, Faculty of
Nursing, School of
DSpace
UBCV
Shapera, Leah Elizabeth
Master of Science in Nursing - MSN
University of British Columbia
A trend toward non-institutionalization of the elderly, in conjunction with the increasing size of the elderly population has resulted in the development of a variety of community programs and services to help meet their complex and diverse health care needs in the community setting. Although there is substantial documentation pertaining to the needs of the elderly in the community and the available services (Lifton, 1989; Padula, 1983; Starrett, 1986; Wallace, 1987), this documentation has been generated primarily by health care professionals and agencies, rather than from the perspectives of the elderly themselves. Adult Day Care [ADC] programs were established in the late 1960s as one means of attempting to meet the needs of the frail elderly in the community (Padula, 1983). On the surface, these programs appear to be effective in meeting the needs of clients through the provision of nursing services and a wide variety of therapeutic programs and social activities. This exploratory descriptive study was based on the premise that there exists a need to gain insight into the clients' perspectives regarding the ways in which ADC services are instrumental in meeting their perceived needs. Data were collected and analyzed to identify the self-perceived needs of ADC clients and their perceptions of how the ADC nursing services were instrumental in assisting them to meet these needs. Two interviews were conducted with each of the 11 ADC participants comprising the sample, using a semi-structured interview guide developed by the researcher. The two needs most commonly identified by participants included the need to cope with a range of concurrent and/or successive losses, and the need to establish new support systems. Participants identified the most significant components of the nursing role as those of the provision of emotional support through counselling, and the provision of health monitoring services. Participants viewed the overall ADC program as important in assisting them to meet their needs by providing access to social outings, individualized care, emotional support, and the opportunity to enhance their self-esteem, confidence, and feelings of belongingness.
MEETING THE NURSING CARE NEEDS OF THE ELDERLY IN THE COMMUNITY: CLIENTS' PERSPECTIVES ON ADULT DAY CARE By LEAH ELIZABETH SHAPERA B.S.N., U n i v e r s i t y of B r i t i s h Columbia/ Vancouver, 1986 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 to the r e q u i r e d standard THE UNIVERSITY OF BRITISH COLUMBIA J u l y 1990 © L e a h E l i z a b e t h Shapera, 1990 In presenting this thesis in partial fulfilment of the requirements for an advanced degree at the University of British Columbia, I agree that the Library shall make it freely available for reference and study. I further agree that permission for extensive copying of this thesis for scholarly purposes may be granted by the head of my department or by his or her representatives. It is understood that copying or publication of this thesis for financial gain shall not be allowed without my written permission. Department of KJltftSlA) L-The University of British Columbia Vancouver, Canada DE-6 (2/88) i i A b s t r a c t A trend toward n o n - i n s t i t u t i o n a l i z a t i o n of the e l d e r l y , i n c o n j u n c t i o n with the i n c r e a s i n g s i z e of the e l d e r l y p o p u l a t i o n has r e s u l t e d i n the development of a v a r i e t y of community programs and s e r v i c e s to help meet t h e i r complex and d i v e r s e h e a l t h care needs i n the community s e t t i n g . Although there i s s u b s t a n t i a l documentation p e r t a i n i n g to the needs of the e l d e r l y i n the community and the a v a i l a b l e s e r v i c e s ( L i f t o n , 1989; Padula, 1983; S t a r r e t t , 1986; Wallace, 1987), t h i s documentation has been generated p r i m a r i l y by h e a l t h care p r o f e s s i o n a l s and agencies, r a t h e r than from the p e r s p e c t i v e s of the e l d e r l y themselves. Adult Day Care [ADC] programs were e s t a b l i s h e d i n the l a t e 1960s as one means of attempting to meet the needs of the f r a i l e l d e r l y i n the community (Padula, 1983). On the s u r f a c e , these programs appear to be e f f e c t i v e i n meeting the needs of c l i e n t s through the p r o v i s i o n of n u r s i n g s e r v i c e s and a wide v a r i e t y of t h e r a p e u t i c programs and s o c i a l a c t i v i t i e s . T h i s e x p l o r a t o r y d e s c r i p t i v e study was based on the premise that there e x i s t s a need to g a i n i n s i g h t i n t o the c l i e n t s ' p e r s p e c t i v e s r e g a r d i n g the ways i n which ADC s e r v i c e s are i n s t r u m e n t a l i n meeting t h e i r p e r c e i v e d needs. Data were c o l l e c t e d and analyzed to i d e n t i f y the s e l f -p e r c e i v e d needs of ADC c l i e n t s and t h e i r p e r c e p t i o n s of how the i i i ADC n u r s i n g s e r v i c e s were inst r u m e n t a l i n a s s i s t i n g them to meet these needs. Two i n t e r v i e w s were conducted with each of the 11 ADC p a r t i c i p a n t s comprising the sample, using a s e m i - s t r u c t u r e d i n t e r v i e w guide developed by the r e s e a r c h e r . The two needs most commonly i d e n t i f i e d by p a r t i c i p a n t s i n c l u d e d the need to cope with a range of concurrent and/or s u c c e s s i v e l o s s e s , and the need to e s t a b l i s h new support systems. P a r t i c i p a n t s i d e n t i f i e d the most s i g n i f i c a n t components of the n u r s i n g r o l e as those of the p r o v i s i o n of emotional support through c o u n s e l l i n g , and the p r o v i s i o n of h e a l t h m o n i t o r i n g s e r v i c e s . P a r t i c i p a n t s viewed the o v e r a l l ADC program as important i n a s s i s t i n g them to meet t h e i r needs by p r o v i d i n g access to s o c i a l o u t i n g s , i n d i v i d u a l i z e d care, emotional support, and the o p p o r t u n i t y to enhance t h e i r s e l f - e s t e e m , c o n f i d e n c e , and f e e l i n g s of belongingness. i v Table of Contents A b s t r a c t i i Acknowledgements v i i i Chapter I Background to the Study 1 Problem and Purpose of the Study 4 Problem Statement 4 Study Purpose 5 C o n c e p t u a l i z a t i o n of the Problem 5 D e f i n i t i o n of Terms 6 Assumptions 7 L i m i t a t i o n s 8 Summary 8 II Review of the L i t e r a t u r e . . . . 9 Demographic Trends Related to the E l d e r l y 9 Research on Needs and Adult Day Care 10 I d e n t i f i e d Problems with Present S e r v i c e s 15 III Methodology 20 Research Design 20 S e l e c t i o n of the Sample 20 S e l e c t i o n Procedures 20 S e l e c t i o n C r i t e r i a 21 Process f o r E l i c i t i n g Subject P a r t i c i p a t i o n 21 Instruments 22 P i l o t Study 23 R e l i a b i l i t y and V a / l i d i t y 23 V Data C o l l e c t i o n 24 Data A n a l y s i s 25 E t h i c a l C o n s i d e r a t i o n s 27 IV R e s u l t s 28 The Sample 28 The F i n d i n g s 28 Per c e i v e d Needs of P a r t i c i p a n t s 29 The Need to Cope with Concurrent and/or Successive Losses ....29 The Need to E s t a b l i s h F r i e n d s h i p s and Support Systems 33 The Role of the Adult Day Care Program in Meeting C l i e n t s ' Needs 36 Access to Emotional Support 36 Access to S o c i a l Outings and Group A c t i v i t i e s 38 Enhancing Self-esteem, Confidence, and F e e l i n g s of Belongingness 44 Access to S i n c e r e and I n d i v i d u a l i z e d Care 46 The Role of the Nurse i n A s s i s t i n g C l i e n t s to Meet t h e i r Needs 48 C o u n s e l l i n g S e r v i c e s and Emotional Support 48 The Nurses' Presence 49 I n d i v i d u a l i t y of Care 51 The Nurses' O b s e r v a t i o n a l S k i l l s 53 The Nurses' Knowledge Base 54 Communication and I n t e r p e r s o n a l S k i l l s 56 v i Health M o n i t o r i n g S e r v i c e s 60 Summary 61 V Summary, C o n c l u s i o n s , I m p l i c a t i o n s , and Recommendations 65 Summary 6 5 P a r t i c i p a n t s ' Expressed Needs 66 The Role of the Adult Day Care Program i n Meeting C l i e n t s ' Needs 67 The Role of the Nurse i n A s s i s t i n g P a r t i c i p a n t s to Meet T h e i r Needs 69 Met h o d o l o g i c a l Issues 71 The Data C o l l e c t i o n Instrument 71 The Use of a Follow-up Interview 71 The Length and Format of In t e r v i e w s . . 72 D i f f i c u l t i e s i n Securing Interview Appointments 73 Conc l u s i o n s 74 P a r t i c i p a n t s ' Needs 74 The Role of the Adult Day Care Program .75 The Role of the Nurse 75 I m p l i c a t i o n s 76 Nursing Research 76 Nursing Education 77 Nursing P r a c t i c e 79 References 81 Appendices 86 I Information L e t t e r to P a r t i c i p a n t s 86 II Consent Form f o r Research Study 88 Agency Consent Form i n t e r v i e w Guide v l l t Acknowledgements I would l i k e to express my s i n c e r e g r a t i t u d e to the members of my t h e s i s committee, Janet Gormick and S h e i l a Stanton, whose a s s i s t a n c e and expert guidance made t h i s l e a r n i n g experience an e n l i g h t e n i n g and p o s i t i v e one. T h e i r unending encouragement, support, and f l e x i b i l i t y were g r e a t l y a p p r e c i a t e d . I a l s o owe a s p e c i a l thank you to the Canadian Nurses' Foundation and the Royal Canadian Legion f o r p r o v i d i n g me with the f i n a n c i a l support needed to complete t h i s study. I would a l s o l i k e to express my g r a t i t u d e to the A d u l t Day Care a d m i n i s t r a t o r s and s t a f f whose support, a s s i s t a n c e , and f l e x i b i l i t y were g r e a t l y a p p r e c i a t e d . F i n a l l y , and most imp o r t a n t l y , I would l i k e to extend a v e r y s p e c i a l thank you to the c l i e n t s who p a r t i c i p a t e d i n t h i s study. T h e i r w i l l i n g n e s s to welcome me Into t h e i r homes, and to share t h e i r i d e a s , f e e l i n g s , thoughts, and f e a r s made t h i s study p o s s i b l e . 1 Chapter One Background to the Study The p r o p o r t i o n of Canada's e l d e r l y p o p u l a t i o n i s r i s i n g s t e a d i l y and i t has been p r o j e c t e d t h a t by the year 2000, 13 percent of Canada's p o p u l a t i o n w i l l exceed the age of 65. T h i s r e p r e s e n t s approximately 13 m i l l i o n people and of these, 1 i n 4 w i l l be over the age of 80 ( N a t i o n a l A d v i s o r y C o u n c i l on Aging tNACA], 1986). The s i g n i f i c a n c e of these s t a t i s t i c s i s d i c t a t e d not o n l y by sheer numbers, but a l s o by the c h a r a c t e r i s t i c s of t h i s growing p o p u l a t i o n . With t e c h n o l o g i c a l advances, s o c i e t y i s s e e i n g i n c r e a s i n g l o n g e v i t y i n the e l d e r l y accompanied by complex medical and p s y c h o s o c i a l problems, d i s a b i l i t i e s , and c h r o n i c i l l n e s s e s . Community-based h e a l t h care has become a growth i n d u s t r y due to the i n c r e a s i n g numbers of e l d e r l y , an emphasis on non-i n s t i t u t i o n a l i z a t i o n , and a demonstrated i n t e r e s t on the p a r t of the e l d e r l y to remain i n t h e i r homes i n the community s e t t i n g . There i s a l s o r e c o g n i t i o n by the l a r g e r s o c i e t y of the value of community care f o r the e l d e r l y to a l l e v i a t e pressure on acute care h o s p i t a l s and long term care f a c i l i t i e s ( L i f t o n , 1989). The concept of A d u l t Day Care [ADC] was developed i n response to the growing nationwide need to i n c r e a s e the o p t i o n s a v a i l a b l e to the e l d e r l y . By d e f i n i t i o n , ADC i s a h e a l t h and s o c i a l s e r v i c e s 2 program t h a t endeavors to stre n g t h e n the i n d i v i d u a l ' s a b i l i t y to f u n c t i o n i n the community. I t i s designed to serve the e l d e r l y who r e q u i r e a s s i s t a n c e i n overcoming d i f f i c u l t i e s a s s o c i a t e d with aging, i l l n e s s , d i s a b i l i t y , or who r e q u i r e i n t e r v e n t i o n to prevent d e t e r i o r a t i o n of p h y s i c a l and mental f u n c t i o n i n g (Padula, 1983; Weiler & Rathbone-McCuan, 1978). Accor d i n g to a re c e n t survey ( J a r r e l l , 1989), there are 51 ADC c e n t r e s known to be o p e r a t i n g i n B r i t i s h Columbia. E i g h t y -e i g h t percent of these c e n t r e s are l o c a t e d i n urban or suburban areas, while the remaining 12 percent are l o c a t e d i n r u r a l a r e a s . The m a j o r i t y of ADC c l i e n t s are over the age of 75, and 41 percent of the c e n t r e s who responded to t h i s survey r e p o r t e d the average age of c l i e n t s to be over 80. The survey a l s o r e v e a l e d t h a t approximately 59 percent of c l i e n t s a t t e n d i n g ADC programs were c l a s s i f i e d as p h y s i c a l l y d i s a b l e d or f r a i l , 26 percent were c o g n i t i v e l y impaired, 14 percent were e m o t i o n a l l y f r a g i l e , and l e s s than 1 percent were m e n t a l l y r e t a r d e d . Although many c l i e n t s f e l l i n t o more than one category, these c a t e g o r i e s r e f l e c t e d the primary reason f o r r e f e r r a l . A l l c e n t r e s r e p o r t e d p r o v i d i n g an e x e r c i s e program, a r t s and c r a f t s , and c e l e b r a t i o n s of s p e c i a l events. Some of the other a c t i v i t i e s o f f e r e d by c e n t r e s i n c l u d e bowling, swimming, walks, o u t i n g s , o v e r n i g h t t r i p s , gardening, music therapy, baking, men's programs, poetry, photography, d i s c u s s i o n groups, and drama c l u b s . S t a f f i n g g e n e r a l l y i n c l u d e s an a d m i n i s t r a t o r , a 3 secretary/bookkeeper, a nurse, a cook, a program c o o r d i n a t o r , program workers, and v o l u n t e e r s . The m a j o r i t y of c e n t r e s o f f e r meal s e r v i c e a t lunch, and some c e n t r e s o f f e r b a t h i n g , home n u r s i n g , r e h a b i l i t a t i o n s e r v i c e s , and/or custom t r a n s p o r t a t i o n . The n u r s i n g s e r v i c e s most f r e q u e n t l y provided are f e e d i n g , t o i l e t i n g , p o d i a t r y , m o n i t o r i n g of s p e c i f i c h e a l t h problems such as blood p r e s s u r e , p u l s e , weight, and d i e t , and the management of medical emergencies. Many c e n t r e s r e p o r t e d p r o v i d i n g a v a r i e t y of c o u n s e l l i n g s e r v i c e s , although i t was un c l e a r as t o which s t a f f members were p r o v i d i n g t h i s s e r v i c e ( J a r r e l l , 1989). St u d i e s have shown t h a t nurses want to provide care t h a t s a t i s f i e s and meets the needs of p a t i e n t s (Forgan Morle, 1984; LaMonica, 1986). "Although the e l d e r l y comprise a l a r g e p o r t i o n of the p o p u l a t i o n served by nurses, n u r s i n g r e s e a r c h has not s y s t e m a t i c a l l y e v a l u a t e d the h e a l t h care s e r v i c e s p r o v i d e d t o t h i s group" (Chang, Uman, L i n n , Ware, & Kane, 1984, p. 367). I t i s imperative t h a t h e a l t h care p r o v i d e r s become more aware of p a t i e n t s ' p e r c e p t i o n s of t h e i r h e a l t h care needs and the s e r v i c e s a v a i l a b l e to meet these needs (Gamotis, Dearmon, D o o l i t t l e & P r i c e , 1988). Va r i o u s authors have d i s c u s s e d the needs of the w e l l e l d e r l y (Ferguson, 1987; G a l l a g h e r , 1985; Padula, 1983; Rosenkoetter, 1985) and the i n s t i t u t i o n a l i z e d e l d e r l y (Forgan Morle, 1984; Melanson & Meagher, 1986; Pe n s i e r o & Adams, 1987). What have not been adequately addressed are the needs of the f r a i l e l d e r l y 4 who, d e s p i t e v a r i o u s h e a l t h problems, continue to f u n c t i o n i n the community s e t t i n g through a s s i s t a n c e provided by community support s e r v i c e s such as ADC. To determine the value of ADC n u r s i n g s e r v i c e s , the needs of ADC c l i e n t s must be documented and examined i n r e l a t i o n to the way i n which t h i s p a r t i c u l a r s e r v i c e c o u l d or does a s s i s t them i n meeting t h e i r p e r c e i v e d n u r s i n g care needs. Determining the needs of the e l d e r l y would provide u s e f u l i n f o r m a t i o n f o r s e r v i c e s such as ADC, i n terms of e s t a b l i s h i n g c r i t e r i a a g a i n s t which c u r r e n t programs co u l d be e v a l u a t e d , and f u t u r e programs c o u l d be planned. As Wallace (.1987) p o i n t s out, " c o n s i d e r i n g t h a t the concept of ADC f o r the f r a i l e l d e r l y i s a community s e r v i c e that appears to have gr e a t f u t u r e growth p o t e n t i a l , i t i s e s s e n t i a l t h a t c e n t r e s do not expand simply to keep pace with the number of e l d e r l y , but they expand because they p r o v i d e q u a l i t y care t h a t e n r i c h e s the l i v e s of o l d e r i n d i v i d u a l s " (p. 165). Problem and Purpose of the Study Problem Statement There c u r r e n t l y e x i s t s a p a u c i t y of r e s e a r c h c o n c e r n i n g the s e 1 f - p e r c e i v e d needs of the e l d e r l y r e s i d i n g i n the community s e t t i n g . The p o p u l a t i o n served by community programs, such as ADC, Is i n c r e a s i n g r a p i d l y , and i t i s important t h a t the n u r s i n g 5 care needs o£ ADC c l i e n t s be e x p l o r e d and examined i n r e l a t i o n to the n u r s i n g s e r v i c e s being p r o v i d e d . Study Purpose The purpose of t h i s study was to e x p l o r e and d e s c r i b e the e l d e r l y ' s s e l f - p e r c e i v e d n u r s i n g care needs and t h e i r p e r c e p t i o n of how ADC's n u r s i n g s e r v i c e s a s s i s t e d them i n meeting these needs. C o n c e p t u a l i z a t i o n of the Problem The c o n c e p t u a l framework used fo r t h i s study was the U n i v e r s i t y of B r i t i s h Columbia [UBC) Model f o r Nursing (Campbell, 1987). T h i s b e h a v i o r a l systems model views the i n d i v i d u a l as having nine b a s i c needs experienced as t e n s i o n s . These i n c l u d e needs f o r : (a) intake of food, f l u i d , nourishment, (b) intake of oxygen, (c) c o l l e c t i o n and removal of accumulated wastes, (d) s t i m u l a t i o n of the senses, (e) balance between the p r o d u c t i o n and u t i l i z a t i o n of energy, (£) s a f e t y and s e c u r i t y , (g) l o v e , belongingness, and dependence, (h) mastery, and ( i ) r e s p e c t of s e l f by s e l f and o t h e r s . I n d i v i d u a l s use c o p i n g behaviors to reduce t e n s i o n s . The i n d i v i d u a l i s viewed as a system i n which needs are interdependent and behavior i s organized i n t o s y s t e m a t i c , r e p e t i t i v e p a t t e r n s i n an attempt to s a t i s f y each of the 6 c o - e x i s t i n g needs. For the purposes of t h i s study, the nine b a s i c human needs were used as a framework w i t h i n which to analyze the needs i d e n t i f i e d by the study p a r t i c i p a n t s . The nature and prevalence of p h y s i c a l , p s y c h o l o g i c a l , c o g n i t i v e , and s o c i a l a l t e r a t i o n s experienced by the p a r t i c i p a n t s were viewed as f o r c e s impacting upon t h e i r a b i l i t i e s to meet t h e i r needs. The p a r t i c i p a n t s ' p e r c e p t i o n s of the way i n which ADC n u r s i n g s e r v i c e s a s s i s t e d them i n meeting t h e i r needs were viewed i n terms of the coping behaviors t h a t the nurses helped them develop or s t r e n g t h e n . One of the fundamental values of a b e h a v i o r a l system approach l i e s i n the d i r e c t i o n i t p r o v i d e s f o r the equal c o n s i d e r a t i o n of the needs inherent i n each of the subsystems comprising the whole. T h i s model r e q u i r e s t h a t a l l needs be g i v e n equal c o n s i d e r a t i o n , as each c o n t r i b u t e s to the p o t e n t i a l f o r balance and s t a b i l i t y of the system as a whole. D e f i n i t i o n of Terras 1. A d u l t Day Care: A h e a l t h and s o c i a l s e r v i c e s program which endeavors to s t r e n g t h e n the i n d i v i d u a l ' s a b i l i t y to f u n c t i o n i n the community. I t i s designed to serve the f r a i l e l d e r l y who r e q u i r e a s s i s t a n c e i n overcoming d i f f i c u l t i e s a s s o c i a t e d with i l l n e s s or d i s a b i l i t y , or who r e q u i r e i n t e r v e n t i o n to prevent d e t e r i o r a t i o n of p h y s i c a l and mental f u n c t i o n i n g (Padula, 1983; Weiler & Rathbone-McCuan, 1978). None of the 7 ADC s e t t i n g s used f o r t h i s study were m e d i c a l l y d r i v e n or h o s p i t a l a f f i l i a t e d . 2. B a s i c human need: A fundamental requirement f o r s u r v i v a l and growth of the b e h a v i o r a l system (Campbell, 1987). 3. Coping behavior: A response t h a t i n d i c a t e s the way i n which a subsystem i s attempting to s a t i s f y a b a s i c human need f o r the system (Campbell, 1987). 4. Force: A determinant of movement toward or away from a g o a l . 5. Nursing care needs: The b a s i c human needs f o r which n u r s i n g care i s r e q u i r e d . Nursing care r e f e r s to the n u r t u r i n g of i n d i v i d u a l s through f o s t e r i n g , p r o t e c t i n g , s u s t a i n i n g , and/or t e a c h i n g (Campbell, 1987). 6. S i g n i f i c a n t memory impairment: A s t a t e i n which an i n d i v i d u a l i s unable to r e c a l l p e r c e p t i o n s of c u r r e n t and re c e n t - p a s t e x p e r i e n c e s . Assumptions 1. The e l d e r l y r e s i d i n g i n the community s e t t i n g experience p h y s i c a l , emotional, p s y c h o l o g i c a l , and c o g n i t i v e needs which are e i t h e r p o s i t i v e l y or n e g a t i v e l y i n f l u e n c e d by a v a r i e t y of f o r c e s . 2. ADC nurses have the p r o f e s s i o n a l c a p a b i l i t y to a c c u r a t e l y i d e n t i f y c l i e n t s who are o r i e n t e d to a l l 3 spheres (person, p l a c e and time) with no evidence of s i g n i f i c a n t memory 8 impairment. L i m i t a t i o n s 1. The r e s u l t s of t h i s study r e f l e c t e d p a r t i c i p a n t s * p e r s p e c t i v e s based on t h e i r c u r r e n t and r e c e n t e x p e r i e n c e s , and were i n no way l o n g i t u d i n a l i n nature. 2. Subjects were not randomly s e l e c t e d . The nurses who i d e n t i f i e d c l i e n t s who met the sampling c r i t e r i a may have in t r o d u c e d a d d i t i o n a l c r i t e r i a i n terms of s e l e c t i n g c l i e n t s who were seen as being ' d e s i r a b l e * or ' c o o p e r a t i v e * , or who were p e r c e i v e d as needing more a s s i s t a n c e than o t h e r s . T h i s l i m i t a t i o n may have i n f l u e n c e d the depth and breadth of data c o l l e c t e d . Summary T h i s chapter introduced the background i n f o r m a t i o n p e r t a i n i n g t o the s t a t e d problem and purpose of the study, and provided an o u t l i n e of the s e l e c t e d c o n c e p t u a l framework. P e r t i n e n t terms were d e f i n e d , and assumptions and l i m i t a t i o n s were i d e n t i f i e d . Chapter Two p r o v i d e s a review of the l i t e r a t u r e , while Chapter Three d e s c r i b e s the sample s e l e c t i o n procedures and r e s e a r c h methodology. The f i n d i n g s of the study are presented i n Chapter Four, and Chapter F i v e comprises the summary, c o n c l u s i o n s , i m p l i c a t i o n s , and recommendations. 9 Chapter Two Review of the L i t e r a t u r e The l i t e r a t u r e review i s r e p o r t e d i n three s e c t i o n s : (a) demographic trends r e l a t e d to the e l d e r l y , (b) r e s e a r c h on needs and ADC, and (c) I d e n t i f i e d problems with present s e r v i c e s f o r the e l d e r l y . Demographic Trends Related to the E l d e r l y The r a p i d l y expanding s i z e of the e l d e r l y p o p u l a t i o n i n Canada, and t h e i r p a t t e r n s of h e a l t h care u t i l i z a t i o n have been r e c e i v i n g a g r e a t d e a l of a t t e n t i o n , both i n the l i t e r a t u r e and i n the media. In response to t h i s seemingly d i s p r o p o r t i o n a t e share of h e a l t h care r e s o u r c e s consumed by the e l d e r l y , Roos, Shapiro, and Roos (1984) conducted a l o n g i t u d i n a l study to determine the extent to which an i n c r e a s e i n the numbers of e l d e r l y t r a n s l a t e d i n t o i n c r e a s e d demand f o r v a r i o u s h e a l t h care s e r v i c e s . The r e s u l t s " d i d not support the commonly held b e l i e f t h a t advanced age d r a m a t i c a l l y Increases the consumption of a l l types of h e a l t h c a r e " (p. 35). However, i t was found that a l a r g e p r o p o r t i o n of h o s p i t a l beds were occupied by the e l d e r l y , and these authors proposed t h a t t h i s f i n d i n g demonstrated the need f o r i n t e g r a t e d community support s e r v i c e s and i n t e r v e n t i o n s 10 aimed a t p r e v e n t i o n w i t h i n t h i s age group. Since 1931, the l i f e expectancy f o r males has i n c r e a s e d by 10.4 y e a r s , and f o r females 14.3 years. The average l i f e expectancy f o r males i s now 72.6 years, and 79.6 years f o r females. Only 8 percent of people over 65 years of age are c u r r e n t l y r e s i d i n g i n n u r s i n g homes and i n s t i t u t i o n s , while the remainder are r e s i d i n g i n the community ( S e n i o r s ' Resources and Research S o c i e t y of B.C. ISRRSBC], 1988). According to a r e p o r t p u b l i s h e d by the Canadian Medical A s s o c i a t i o n ICMA] (1987), Canada had, u n t i l q u i t e r e c e n t l y , one of the lowest p r o p o r t i o n s of e l d e r l y compared to other c o u n t r i e s , and the. authors of t h i s r e p o r t estimated t h a t by the year 2011, Canada's e l d e r l y p o p u l a t i o n w i l l have i n c r e a s e d o n l y to the percentage t h a t c u r r e n t l y e x i s t s i n many European c o u n t r i e s . The d i f f e r e n c e between Canada's c u r r e n t s i t u a t i o n , and t h a t of some European c o u n t r i e s , i s the s h o r t time frame i n which these changes are t a k i n g p l a c e . Many European c o u n t r i e s have had the advantage of e x p e r i e n c i n g these same demographic changes over a longer p e r i o d of time, thereby a l l o w i n g them some adjustment time. Research on Weeds and Adult Day Care While there e x i s t s a s u b s t a n t i a l amount of a n e c d o t a l documentation which d e s c r i b e s v a r i o u s programs f o r the e l d e r l y , ( L i f t o n , 1989; S t a r r e t t , 1986; Wallace, 1987), Ory (1984) p o i n t s out that "much of the e f f o r t In g e r o n t o l o g i c a l r e s e a r c h over the past few decades has been d i r e c t e d toward d i s p e l l i n g myths about the I n e v i t a b i l i t y of a g e - r e l a t e d d e c l i n e s i n h e a l t h and e f f e c t i v e f u n c t i o n i n g " (p.32). The l i t e r a t u r e search completed f o r t h i s study d i d not uncover any r e s e a r c h which s p e c i f i c a l l y focused on n u r s i n g s e r v i c e s w i t h i n the ADC s e t t i n g , although other elements and components of ADC programs have been re s e a r c h e d . The f o l l o w i n g i s a review of seven s t u d i e s which focused on v a r i o u s a s p e c t s of ADC programs. A d e s c r i p t i v e study done i n 1977 (Regional M u n i c i p a l i t y of Niagara Senior C i t i z e n s ' Department) served to i d e n t i f y c l i e n t s ' and f a m i l y members' p e r c e p t i o n s of s p e c i f i c elements of s e v e r a l ADC programs. A s t r u c t u r e d q u e s t i o n n a i r e was used to e l i c i t i n f o r m a t i o n p e r t a i n i n g to meals, t r a n s p o r t a t i o n , p h y s i c a l f a c i l i t i e s , d a i l y hours of o p e r a t i o n , l e n g t h of time c l i e n t s had u t i l i z e d the s e r v i c e , and how c l i e n t s had become aware of the s e r v i c e . The q u e s t i o n n a i r e a l s o addressed some areas p e r t a i n i n g to c l i e n t s ' s a t i s f a c t i o n with the programs i n terms of the a c t i v i t i e s and s e r v i c e s o f f e r e d . The r e s u l t s r e v e a l e d a f a v o r a b l e p e r c e p t i o n of ADC and the s e r v i c e s o f f e r e d , but because of the s t r u c t u r e d nature of the q u e s t i o n n a i r e used, there was no o p p o r t u n i t y f o r p a r t i c i p a n t s to e l a b o r a t e on any areas, or to provide e x p l a n a t i o n s p e r t a i n i n g to needs t h a t were p o s s i b l y not met. An American study was conducted by Wallace (1987) to 12 determine the c h a r a c t e r i s t i c s of i n d i v i d u a l s who dropped out of the ADC programs p r i o r to meeting any of the g o a l s o u t l i n e d i n t h e i r s e r v i c e p l a n . The r e s u l t s y i e l d e d v a r i a b l e s t h a t i n f l u e n c e d attendance records of ADC p a r t i c i p a n t s . F i n d i n g s r e v e a l e d that the c l i e n t s ' l ength of s t a y i n the ADC program c o r r e l a t e d with t h e i r l i v i n g arrangement and type of support system. The e l d e r l y who had f a m i l y members who were a c t i v e i n the c a r e - g i v e r r o l e were l e s s l i k e l y to continue a t t e n d i n g an ADC. A r l i n g , Harkins and Romaniuk (1984) conducted a study which served to e v a l u a t e the a p p r o p r i a t e n e s s of care f o r the e l d e r l y i n a l t e r n a t i v e s e t t i n g s by comparing a v a r i e t y of c h a r a c t e r i s t i c s of p a r t i c i p a n t s i n ADC programs with those of c l i e n t s who had been screened f o r admission to a n u r s i n g home. The f i r s t group c o n s i s t e d of a t o t a l of 116 c l i e n t s a t t e n d i n g 10 of the 12 ADC c e n t r e s i n the s t a t e of V i r g i n i a , and a t o t a l of approximately 90 s i g n i f i c a n t o t h e r s , such as f a m i l y members, or primary c a r e - g i v e r s . T h i s f i r s t group was then compared to (a) a group of 113 s u b j e c t s who had been screened and determined a p p r o p r i a t e f o r admission to a n u r s i n g home, and (b) a group of 110 s u b j e c t s who were screened and judged to be capable of remaining i n the community, with in-home s e r v i c e s , or some a l t e r n a t i v e l i v i n g arrangement. None of the s u b j e c t s from these two l a t t e r groups were a t t e n d i n g ADC. Based on t h e i r f i n d i n g s , these authors concluded t h a t ADC c l i e n t s were no d i f f e r e n t from n u r s i n g home a p p l i c a n t s based on a) major demographic c h a r a c t e r i s t i c s i n c l u d i n g age, race, sex, m a r i t a l s t a t u s , and number of l i v i n g c h i l d r e n ; b) the number and kinds of medical c o n d i t i o n s r e p o r t e d ; c) l e v e l s of c o g n i t i v e impairment; or d) frequency of p h y s i c i a n c o n s u l t a t i o n s . S i g n i f i c a n t d i f f e r e n c e s were found, however, between ADC c l i e n t s and the other 2 p o p u l a t i o n s , i n that ADC c l i e n t s were found to (a) have s i g n i f i c a n t l y higher e d u c a t i o n a l l e v e l s and income, (b) were more l i k e l y to be l i v i n g with f a m i l y and l e s s l i k e l y to l i v e a l o ne, (c) demonstrated l e s s severe impairments i n t h e i r a c t i v i t i e s of d a i l y l i v i n g than those recommended for n u r s i n g -home c a r e , (d) r e p o r t e d fewer sensory impairments, (e) experienced fewer days i n bed, and ( f ) used fewer in-home s e r v i c e s , such as housekeeping, p e r s o n a l c a r e , n u r s i n g c a r e , meal p r e p a r a t i o n , and continuous s u p e r v i s i o n . Gaertner, S t e r l i n g , and Marklsohn (1981) conducted a study which compared 29 matched samples of ADC p a r t i c i p a n t s and nursing-home r e s i d e n t s to determine the treatment and c o s t -e f f e c t i v e n e s s of the r e s p e c t i v e approaches. A l e r t n e s s and Involvement S c a l e s , as w e l l as s t a f f r a t i n g s of p a r t i c i p a n t s ' involvement i n a v a i l a b l e a c t i v i t i e s were used f o r data c o l l e c t i o n and measurement. The authors r e p o r t e d t h a t , a c c o r d i n g t o t h e i r r e s u l t s , day care and continued community l i v i n g are v i a b l e , d e s i r a b l e , and c o s t - e f f e c t i v e a l t e r n a t i v e s f o r a segment of n u r s i n g hone r e s i d e n t s . R a f f e r t y (1979) conducted a study to determine whether ADC p a r t i c i p a n t s i n one program i n Minnesota d i f f e r e d s i g n i f i c a n t l y from homebound o l d e r persons in that agency's t a r g e t s e r v i c e area with regard to the degree of l i f e s a t i s f a c t i o n and s o c i a l i n t e r a c t i o n they e x p e r i e n c e d . T o o l s were used to e l i c i t s e l f -r e p o r t e d data p e r t a i n i n g to both o b j e c t i v e and s u b j e c t i v e elements of s o c i a l r e l a t i o n s , s o c i a l a c t i v i t i e s , and s o c i a l i n d i c a t o r s of l i f e s a t i s f a c t i o n . T h i s author concluded t h a t the p a r t i c i p a n t s of the day care program used f o r t h i s study experienced a higher p y s c h o s o c i a l q u a l i t y of l i f e than d i d homebound o l d e r persons r e s i d i n g i n that agency's t a r g e t a r e a . While the author acknowledges t h a t these r e s u l t s cannot be g e n e r a l i z e d to other ADC p o p u l a t i o n s , i t i s a l s o important to note t h a t no r e p o r t s concerning r e l i a b i l i t y and v a l i d i t y of the measurement t o o l s used for t h i s study were i n c l u d e d i n the r e s e a r c h r e p o r t . U l l i n e r , Abrahams, and Brown (1982) used d i s c r i m i n a n t f u n c t i o n a l a n a l y s i s to examine the d a i l y f u n c t i o n i n g l e v e l s of three p o p u l a t i o n s : (a) s e n i o r c i t i z e n c e n t r e p a r t i c i p a n t s , (b) ADC c l i e n t s , and (c) n u r s i n g home c l i e n t s . The r e s u l t s r e v e a l e d t h a t ADC served a d i s t i n c t p o p u l a t i o n of e l d e r l y who had unique needs from those of the other two p o p u l a t i o n s . These authors concluded t h a t t h i s p o p u l a t i o n c o n s i s t e d of semi-dependent i n d i v i d u a l s who were ab l e to continue f u n c t i o n i n g In the community, e s p e c i a l l y w i t h i n a s t r u c t u r e d s e t t i n g such as ADC. Based on t h e i r f i n d i n g s , i t was a l s o concluded t h a t ADC p r o v i d e s a v i a b l e s e r v i c e w i t h i n the h e a l t h care continuum. C h a p p e l l (1983) conducted a study i n Manitoba of ADC p a r t i c i p a n t s who (a) improved, (b) remained s t a b l e , or (c) d e t e r i o r a t e d on the dimensions of f u n c t i o n a l a b i l i t y and mental f u n c t i o n i n g . By c o r r e l a t i n g these f i n d i n g s with demographic f a c t o r s , s u b j e c t i v e and s o c i a l f a c t o r s , c h a r a c t e r i s t i c s of t h e i r p a r t i c i p a t i o n i n the program, and d i s e a s e s coded from t h e i r medical r e c o r d s , t h i s author explored whether or not i t was p o s s i b l e to i d e n t i f y who would b e n e f i t while i n the ADC program. While the author acknowledged t h a t the r e s u l t s provided o n l y a p o t e n t i a l answer to t h i s q u e s t i o n , i t was determined t h a t ADC programs were seen to be p r o v i d i n g s e r v i c e s which were r e l a t e d to improved f u n c t i o n a l a b i l i t y , p a r t i c u l a r l y f o r those p a r t i c i p a n t s with fewer r e l a t i v e s and who were l i v i n g a l o n e . In terms of the dimension of mental h e a l t h , the f i n d i n g s suggested t h a t the ADC program worked w e l l i n c o n j u n c t i o n with e x i s t i n g m a r i t a l r e l a t i o n s h i p s , p r o v i d i n g the most b e n e f i t to those s t i l l m a rried. f I d e n t i f i e d Problems with Present S e r v i c e s Ways of a s s i s t i n g the e l d e r l y to remain i n the community have been r e c e i v i n g i n c r e a s i n g a t t e n t i o n over the l a s t few decades ( B u t l e r & Lewis, 1982; Canadian Medical A s s o c i a t i o n , 1987; L i f t o n , 1989; The N a t i o n a l A d v i s o r y C o u n c i l on Aging, 1986; Padula, 1983). According to B u t l e r and Lewis (1982), the most obvious reason f o r community support s e r v i c e s t h a t a l l o w the e l d e r l y to remain a t home, i s th a t most o l d e r people p r e f e r i t , as one's home environment and f a m i l i a r surroundings o f f e r s reassurance and f e e l i n g s of s e c u r i t y . Remaining i n one's home a l s o avoids s e p a r a t i o n from f r i e n d s , f a m i l y members, p o s s e s s i o n s , and p e t s , and allows the e l d e r l y t o ma i n t a i n a sense of c o n t r o l and independence ( B u t l e r & Lewis, 1982). The p r a c t i c e of i n s t i t u t i o n a l i z i n g the e l d e r l y has come under c r i t i c i s m i n the past two decades (Carson, 1970; Melanson & Meagher, 1986). T h i s c r i t i c i s m stems from i s s u e s based on both e t h i c a l and f i n a n c i a l grounds. Carson (1970) d i s c u s s e d the i n s t i t u t i o n s and s e r v i c e s c o n s t r u c t e d f o r the e l d e r l y as a r e f l e c t i o n of s t e r e o t y p e s , s e g r e g a t i o n , and stigmas. Lopata (1973) and Stephens (1975) argue t h a t i n s t i t u t i o n a l i z a t i o n i s unacceptable based on the b e l i e f t h a t independence i s d e s i r a b l e , and t h a t i n s t i t u t i o n s r e s t r i c t autonomy while encouraging dependence. The focus on a l t e r n a t i v e forms of community h e a l t h care f o r the e l d e r l y , which are f r e q u e n t l y c o n s i d e r e d l e s s expensive than long-term I n s t i t u t i o n a l i z a t i o n , has c o i n c i d e d with economic r e s t r a i n t i n Canada (Lalonde, 1974; Welner, Brok & Snadowsky, 1978). E i s d o r f e r and Cohen (1982) argue t h a t community h e a l t h s e r v i c e s r e q u i r e d to maintain the e l d e r l y i n the community are sometimes not accepted as l e g i t i m a t e h e a l t h c o s t s because they Include s o c i a l programs. These authors f u r t h e r argue t h a t , while p r e v e n t i o n i s l e s s c o s t l y than d i a g n o s i s and treatment, i t s e f f i c a c y i s o f t e n obscure, and programs f o c u s i n g on pr e v e n t i o n a re i n danger of being cut d u r i n g tiroes of economic 17 r e s t r a i n t . The N a t i o n a l A d v i s o r y C o u n c i l on Aging (1981, 1986) and the CMA (1987) have i d e n t i f i e d t h a t one of Canada's problems r e g a r d i n g care of the e l d e r l y r e l a t e s to the fragmentation of a v a i l a b l e s e r v i c e s . E l d e r l y c l i e n t s r e s i d i n g i n the community f r e q u e n t l y r e c e i v e care from a number of p r o f e s s i o n a l s and agencies who are not l i n k e d i n any formal or i n f o r m a l way, and are t h e r e f o r e , not communicating with each o t h e r . There i s o f t e n a b l u r r i n g of p r o f e s s i o n a l r o l e s and r e s p o n s i b i l i t i e s which c r e a t e s a l a c k of c o o r d i n a t i o n and c o n t i n u i t y of care (CM.A., 1987). In an a r t i c l e w r i t t e n by Ferguson (1987), emphasis was g i v e n to the need to s t r e n g t h e n community h e a l t h s e r v i c e s by c r e a t i n g a continuum of care to meet the needs of the e l d e r l y l i v i n g i n the community s e t t i n g . The Health F a c i l i t i e s Design D i v i s i o n of Health and Welfare Canada commissioned C l u f f and C l u f f (1981) to complete a l a r g e s u r v e y - d e s i g n study of s e r v i c e s f o r the e l d e r l y . T h i s study i d e n t i f i e d the network of programs and s e r v i c e s o f f e r e d t o e l d e r l y persons by government agencies and Independent groups or a s s o c i a t i o n s , i n an attempt to determine present gaps i n s e r v i c e needs. A t o t a l of 263 requests f o r i n f o r m a t i o n were mailed out to m u n i c i p a l agencies and programs i n Montreal, Toronto, and Vancouver, with a response r a t e of approximately 70 p e r c e n t . Information e l i c i t e d p e r t a i n e d to e x i s t i n g programs and needs r e l a t e d to s h e l t e r , f i n a n c i a l , s o c i a l , and p s y c h o l o g i c a l support of the e l d e r l y . 18 A ccording to the authors o£ t h i s study, the r e s u l t s demonstrated the prevalence of an acute care o r i e n t a t i o n i n responding to the needs of the e l d e r l y . These authors concluded t h a t " s i n c e the h e a l t h needs of the e l d e r l y are p r i m a r i l y manifested i n c h r o n i c and d i s a b l i n g dependency s t a t e s , the p r e v a l e n t acute care medical o r i e n t a t i o n of the h e a l t h system i s inadequate and i n e f f i c i e n t i n meeting t h i s demand" (p.26). S p e c i f i c areas of concern r e v e a l e d by t h i s study p e r t a i n e d to a g e n e r a l i z e d lack of (a) a continuum of s e r v i c e s , (b) comprehensive d e l i v e r y mechanisms f o r a wide scope of g e r i a t r i c h e a l t h s e r v i c e s , (c) r e g u l a r s c r e e n i n g programs, and (d) r e h a b i l i t a t i v e , p a l l i a t i v e , r e s p i t e , d e n t i s t r y , and p o d i a t r y s e r v i c e s . I t was f u r t h e r determined that d i v e r s e c r i t e r i a f o r admission or access to programs and s e r v i c e s f r e q u e n t l y r e s u l t e d i n the e l d e r l y a c c e s s i n g necessary support on l y i n response to a c r i s i s s i t u a t i o n . These authors proposed t h a t such s i t u a t i o n s might be m i t i g a t e d by e a r l y access to p r e v e n t i v e care programs. Respondents f u r t h e r i n d i c a t e d t h a t there was a g r e a t need for programs which provided f u n c t i o n a l assessments and a i d s to independent l i v i n g . The r e s u l t s a l s o demonstrated a l a c k of s e r v i c e s f o r r e t i r e m e n t , n u t r i t i o n a l , and f i n a n c i a l c o u n s e l l i n g , i n a d d i t i o n to mental and p h y s i c a l a c t i v a t i o n , shopping, t r a n s p o r t a t i o n , and a p p r o p r i a t e r e c r e a t i o n . The authors of t h i s study a l s o concluded t h a t day care programs are a growing a l t e r n a t i v e to both home care and long-term c a r e , and appear t o serve as an e s s e n t i a l component of the care continuum. I t was a l s o noted that the r o l e of day c a r e s f o r the e l d e r l y would be a f r u i t f u l area f o r r e s e a r c h , s i n c e few f u n c t i o n a l c r i t e r i a were found to e x i s t , and l i t t l e i n f o r m a t i o n was a v a i l a b l e on the s p a t i a l and environmental aspects of such s e t t i n g s . 20 Chapter Three Methodology T h i s chapter p r o v i d e s i n f o r m a t i o n p e r t a i n i n g to r e s e a r c h d e s i g n , s e l e c t i o n of p a r t i c i p a n t s , s t r a t e g i e s f o r data c o l l e c t i o n , and methods used f o r data a n a l y s i s . Research Design The r e s e a r c h d e s i g n s e l e c t e d f o r t h i s study was e x p l o r a t o r y d e s c r i p t i v e . The l i t e r a t u r e search d i d not r e v e a l any s i g n i f i c a n t r e s e a r c h p e r t a i n i n g to the s e l f - p e r c e i v e d n u r s i n g care needs of ADC c l i e n t s and t h e i r p e r c e p t i o n of how ADC n u r s i n g s e r v i c e s a s s i s t s them i n meeting these needs. I t was t h e r e f o r e necessary to s e l e c t a methodology which allowed e x p l o r a t i o n of the problem. Because the purpose of the study was to e x p l o r e and d e s c r i b e , i t was necessary to u t i l i z e a study d e s i g n t h a t p e r m i t t e d f l e x i b i l i t y i n order to o b t a i n a r i c h data base f o r a n a l y s i s . S e l e c t i o n o£ t h e Sample S e l e c t i o n procedures. To a l l o w f o r an in-depth study of c l i e n t s ' p e r c e p t i o n s , a convenience sample of 12 was u t i l i z e d , two from each of s i x ADC c e n t r e s . The in t a k e and d i s c h a r g e of ADC c l i e n t s made i t v i r t u a l l y impossible to o b t a i n a complete sampling frame from which t o draw a p r o b a b i l i t y sample. S e l e c t i o n c r i t e r i a . A l l p a r t i c i p a n t s s e l e c t e d f o r t h i s study met the f o l l o w i n g e l i g i b i l i t y c r i t e r i a : a) were s i x t y - f i v e years of age or over b) were ab l e to speak and understand E n g l i s h c) were ab l e t o gi v e informed consent f o r p a r t i c i p a t i o n i n the study d) had been a t t e n d i n g one of the s i x ADCs s e l e c t e d f o r t h i s study, f o r a p e r i o d of no l e s s than 6 months, with an attendance r e c o r d of a t l e a s t two v i s i t s per month. e) were a c t i v e l y u t i l i z i n g the n u r s i n g s e r v i c e s provided a t the ADC c e n t r e f ) were o r i e n t e d to a l l three spheres (person, p l a c e and time) with no evidence of s i g n i f i c a n t memory impairment Process f o r e l i c i t i n g s u b j e c t p a r t i c i p a t i o n . F o l l o w i n g a p p r o v a l from the U n i v e r s i t y of 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 ing Committee, the r e s e a r c h e r randomly s e l e c t e d s i x ADC c e n t r e s from a t o t a l of e i g h t a v a i l a b l e c e n t r e s 22 i n Vancouver, and contacted the a d m i n i s t r a t o r of each s e l e c t e d c e n t r e t o o b t a i n p e r m i s s i o n f o r the study. Although t h e r e was a n i n t h c e n t r e , i t was not i n c l u d e d i n the s e l e c t i o n , because the res e a r c h e r had p r e v i o u s l y been employed by t h a t ADC. P a r t i c i p a n t s were r e c r u i t e d from the s i x randomly s e l e c t e d ADC c e n t r e s i n Vancouver. The nurse at each of the s e l e c t e d c e n t r e s was provided with a w r i t t e n d e s c r i p t i o n of the purpose of the study and the sample s e l e c t i o n c r i t e r i a , and was asked t o i d e n t i f y two c l i e n t s who met the s e l e c t i o n c r i t e r i a . These c l i e n t s were then approached by the ADC nurse who e x p l a i n e d the study purpose, provided c l i e n t s with an i n f o r m a t i o n l e t t e r , and determined whether or not they wished t o p a r t i c i p a t e . C l i e n t s who agreed to p a r t i c i p a t e were Informed that the re s e a r c h e r would v i s i t with them at t h e i r ADC c e n t r e . During t h i s v i s i t , the r e s e a r c h e r answered p a r t i c i p a n t s ' q u e s t i o n s , obtained a signed consent, and p r o v i d e d p a r t i c i p a n t s with a copy. T h i s procedure was continued u n t i l a sample of 12 was ob t a i n e d . Instruments The instrument used to guide p a r t i c i p a n t i n t e r v i e w s i n t h i s study was a s e m i - s t r u c t u r e d i n t e r v i e w guide designed to e l i c i t some s p e c i f i c responses as w e l l as some l e n g t h i e r d e s c r i p t i o n s (appendix I V). The b a s i s f o r the s e l e c t i o n of t h i s type of t o o l was based on the assumption t h a t "a f l e x i b l e i n t e r v i e w . . . c a n b r i n g out much u s e f u l m a t e r i a l because i t a l l o w s the r e s e a r c h e r to . . . e l i c i t the s u b j e c t s * v a l u e s , b e l i e f s , and a t t i t u d e s " (Brink and Wood, 1983, p. 116). P i l o t Study A p i l o t study, u s i n g 2 s u b j e c t s , was conducted f o r the purpose of r e f i n i n g the i n t e r v i e w guide and data a n a l y s i s p l a n . The c r i t e r i a and procedures used f o r sample s e l e c t i o n and data c o l l e c t i o n f o r the p i l o t study were the same as those employed f o r the a c t u a l study. The r e s u l t s of the p i l o t study r e v e a l e d t h a t the i n t e r v i e w guide c o n t a i n e d some qu e s t i o n s t h a t were unclear to the p a r t i c i p a n t s , and others t h a t e l i c i t e d l i m i t e d responses. Those p a r t i c u l a r q u e s t i o n s were then re-phrased f o r c l a r i t y and rearranged i n terms of the sequence i n which they were addressed i n the i n t e r v i e w guide. R e l i a b i l i t y and V a l i d i t y The use of a p i l o t study c o n t r i b u t e d to the assessment of the r e l i a b i l i t y and v a l i d i t y of the i n t e r v i e w instrument. To ensure adequate s i m i l a r i t y , the r e s e a r c h e r ensured t h a t s u b j e c t s used f o r the p i l o t study met the same e l i g i b i l i t y c r i t e r i a as those used i n the a c t u a l study. To e s t a b l i s h r e l i a b i l i t y , the data c o l l e c t e d f o r the p i l o t study underwent content a n a l y s i s by the r e s e a r c h e r and the t h e s i s committee members to ensure there was agreement p e r t a i n i n g t o emergent themes. Random p o r t i o n s of the data c o l l e c t e d f o r the a c t u a l study were analyzed both by the re s e a r c h e r and the r e s e a r c h e r ' s t h e s i s committee members to f u r t h e r e s t a b l i s h r e l i a b i l i t y . Conducting a p i l o t study a l s o helped to i n c r e a s e the v a l i d i t y of the instrument i n t h a t i t allowed the r e s e a r c h e r to eva l u a t e the extent to which the i n t e r v i e w guide a c t u a l l y e l i c i t e d responses t h a t were p e r t i n e n t and r e l e v a n t t o the re s e a r c h q u e s t i o n s addressed. The t o o l developed f o r t h i s study was designed t o e l i c i t the nu r s i n g care needs of the e l d e r l y w i t h i n the framework of the UBC Model f o r Nursing i n terms of the nine needs experienced by a l l i n d i v i d u a l s . Framing the instrument around the UBC Model f o r Nursing helped i n c r e a s e v a l i d i t y In t h a t t h i s model i s a wel l - a c c e p t e d framework which pro v i d e s c l e a r d i r e c t i o n f o r the assessment of n u r s i n g care needs. The f a c t t h a t the r e s e a r c h e r had p r e v i o u s l y worked i n the ADC s e t t i n g served to f u r t h e r e s t a b l i s h f ace v a l i d i t y . Data C o l l e c t i o n Although 12 p a r t i c i p a n t s agreed t o p a r t i c i p a t e , one p a r t i c i p a n t , due to i n t e r m i t t e n t h e a l t h problems and other p e r s o n a l reasons, was not a v a i l a b l e f o r i n t e r v i e w i n g . T h e r e f o r e , the data producing sample f o r t h i s study was 11 ADC c l i e n t s a t t e n d i n g one of s i x ADCs i n the lower mainland of B r i t i s h Columbia. These 11 s u b j e c t s were interv i e w e d u s i n g a s e m i - s t r u c t u r e d i n t e r v i e w guide developed by the r e s e a r c h e r . The s e m i - s t r u c t u r e d d e s i g n of the i n t e r v i e w guide e l i c i t e d some sho r t s p e c i f i c responses which were recorded by the re s e a r c h e r d u r i n g the i n t e r v i e w , as w e l l as some l e n g t h i e r d e s c r i p t i o n s , which were tape recorded. The taped r e c o r d i n g of each Interview was t r a n s c r i b e d and analyzed i n c o n j u n c t i o n with the w r i t t e n notes. Once the i n i t i a l i n t e r v i e w tapes and notes were t r a n s c r i b e d and analy z e d , a second i n t e r v i e w was conducted to c l a r i f y and v a l i d a t e the p a r t i c i p a n t s ' i n i t i a l responses. The i n i t i a l Interviews took approximately 1 hour to complete, while the follow-up i n t e r v i e w s took approximately 15 t o 20 minutes. A l l i n t e r v i e w s were conducted i n the c l i e n t s * homes. P a t a A n a l y s i s Each taped i n t e r v i e w was t r a n s c r i b e d as soon as p o s s i b l e a f t e r the i n t e r v i e w , and a l l 11 i n i t i a l i n t e r v i e w s were t r a n s c r i b e d p r i o r to co n d u c t i n g the follow-up i n t e r v i e w s . The time I n t e r v a l s between the f i r s t and second i n t e r v i e w s ranged from four t o s i x weeks. The t r a n s c r i b e d data were analyzed i n c o n j u n c t i o n with the w r i t t e n notes obtained d u r i n g the i n t e r v i e w . The w r i t t e n notes comprised demographic i n f o r m a t i o n which underwent s t a t i s t i c a l a n a l y s i s to generate means and 26 frequency t a b u l a t i o n s . Once the t r a n s c r i p t i o n process was completed, the content of each i n t e r v i e w was s t u d i e d i n depth, and compared and c o n t r a s t e d with the other i n t e r v i e w s . From t h i s process emerged the three b a s i c themes of (a) the p a r t i c i p a n t s ' needs, (b) the r o l e of the program i n a s s i s t i n g p a r t i c i p a n t s t o meet t h e i r needs, and (c) the r o l e of the nurse i n a s s i s t i n g p a r t i c i p a n t s to meet t h e i r needs. The theme p e r t a i n i n g t o the r o l e of the ADC program emerged as a r e s u l t of p a r t i c i p a n t s being unable to completely d i v o r c e s p e c i f i c aspects of the n u r s i n g r o l e from those of the o v e r a l l program. While the nine b a s i c needs used as the c o n c e p t u a l framework for t h i s study were used both f o r d e v e l o p i n g the i n t e r v i e w guide and f o r drawing f i n a l c o n c l u s i o n s , they were not found to be a p p r o p r i a t e f o r a n a l y z i n g the data. P a r t i c i p a n t s tended to i d e n t i f y t h e i r own needs i n terms of the more g e n e r a l aspects of l o s s e s , and the c o p i n g s t r a t e g i e s needed to d e a l with these l i f e events and changes. A f t e r content a n a l y s i s , d e t a i l e d data t h a t f e l l w i t h i n each of the three major themes were then s t u d i e d , and c l u s t e r s of s i m i l a r or r e l a t e d data emerged. These c l u s t e r s were f u r t h e r analyzed and s o r t e d a c c o r d i n g to the c o p i n g behaviors and f o r c e s t h a t r e l a t e d to each of the t h r e e themes. These were, i n t u r n , i n t e g r a t e d i n t o a meaningful d e s c r i p t i v e summary of the d a t a . During the process of data a n a l y s i s , a d e c i s i o n was made not to separate responses by ADC s e t t i n g s i n c e h i g h l i g h t i n g s p e c i f i c 27 d i f f e r e n c e s might i n f r i n g e on p a r t i c i p a n t and agency r i g h t s to c o n f i d e n t i a l i t y . E t h i c a l C o n s i d e r a t i o n s In keeping with the d i r e c t i v e s of the U n i v e r s i t y of B r i t i s h Columbia B e h a v i o r a l Sciences Screening Committee, a w r i t t e n consent (see Appendix II) was obtained from a l l study p a r t i c i p a n t s to ensure the p r o t e c t i o n of a l l p a r t i c i p a n t s ' human r i g h t s . Each p a r t i c i p a n t r e c e i v e d a complete v e r b a l and w r i t t e n e x p l a n a t i o n of the study purpose, the nature of t h e i r requested involvement, the approximate amount of time r e q u i r e d , means f o r en s u r i n g c o n f i d e n t i a l i t y , and t h e i r r i g h t to withdraw or r e f u s e p a r t i c i p a t i o n at any time without r i s k to t h e i r f u t u r e care or t h e i r p o s i t i o n i n the ADC (see Appendix I ) . F o l l o w i n g p a r t i c i p a n t consent, each i n t e r v i e w was tape recorded, but to ensure c o n f i d e n t i a l i t y , a coding system was u t i l i z e d to i n s u r e t h a t i n d i v i d u a l s were not i d e n t i f i e d by name. Access to taped i n t e r v i e w s and t r a n s c r i p t s was l i m i t e d to the r e s e a r c h e r and members of her a d v i s o r y committee. P a r t i c i p a n t s ' names were not r e v e a l e d d u r i n g c o n s u l t a t i o n with committee members. A f t e r the t r a n s c r i p t i o n process was completed, a l l tapes were erased. 28 Chapter Four R e s u l t s Chapter Four i s organized i n t o two s e c t i o n s . The f i r s t s e c t i o n d e s c r i b e s c h a r a c t e r i s t i c s of the sample, and the second presents the study f i n d i n g s . The major themes t h a t emerged from the data are d e s c r i b e d i n r e l a t i o n t o the purposes of the study. The Sample The sample (n = 11) was composed of 9 females, ranging i n age between 65 and 82 y e a r s , and 2 males, aged 65 and 72. The mean age f o r the t o t a l sample was 73.8 y e a r s . Three p a r t i c i p a n t s were married, 5 were widowed, 2 were s i n g l e , and 1 was d i v o r c e d . S i x l i v e d alone, 3 r e s i d e d with a spouse, 1 l i v e d with a son, and 1 with a s i b l i n g . The l e n g t h of time f o r which p a r t i c i p a n t s had been a t t e n d i n g ADC ranged from 1 to 5 years, with the mean being 2.5 y e a r s . P a r t i c i p a n t s ' weekly attendance a t the ADC program ranged from 1 to 3 days, with a mean of 2 days per week. The F i n d i n g s The f i n d i n g s of the study are presented i n three s e c t i o n s : (a) p e r c e i v e d needs of p a r t i c i p a n t s , (b) the r o l e of the ADC 29 program In a s s i s t i n g c l i e n t s to meet t h e i r needs, and (c) the r o l e of the nurse i n a s s i s t i n g c l i e n t s t o meet t h e i r needs. P e r c e i v e d Needs of P a r t i c i p a n t s The open-ended que s t i o n s used a t the beginning of the i n t e r v i e w s provided p a r t i c i p a n t s with the o p p o r t u n i t y to d e s c r i b e and e x p l a i n the circumstances t h a t had l e d up to t h e i r a t t e n d i n g ADC. Two major themes arose from the d a t a , the f i r s t of which was the need to cope with a range of concurrent and/or s u c c e s s i v e l o s s e s . P a r t i c i p a n t s ' p e r c e i v e d l o s s e s i n c l u d e d the l o s s of a spouse, the l o s s of f r i e n d s and support systems, and the l o s s of p h y s i c a l f u n c t i o n r e s u l t i n g from c h r o n i c i l l n e s s and d i s e a s e . While the range of l o s s e s experienced was d i v e r s e , i t was necessary to group them together because many p a r t i c i p a n t s experienced numerous l o s s e s t h a t c o l l e c t i v e l y I n f l u e n c e d t h e i r p e r c e i v e d needs and coping a b i l i t i e s . The second theme a r i s i n g from the data was the need to e s t a b l i s h new f r i e n d s h i p s and support systems, and t h i s need was p e r c e i v e d p r i m a r i l y to be the r e s u l t of the p a r t i c i p a n t s ' i n i t i a l l o s s e s . The Need to Cope with Concurrent and/or Successive Losses A l l 11 p a r t i c i p a n t s i n t e r v i e w e d had experienced the l o s s of 30 f a m i l y members, intimate f r i e n d s and acquaintances, and 5 had experienced the death of t h e i r spouse. One p a r t i c i p a n t d e s c r i b e d a s i t u a t i o n i n which she f i r s t became q u i t e i l l and then l o s t her husband d u r i n g the course of her i l l n e s s : I was very i l l . I l o s t my husband about 5 or 6 months l a t e r . I was always at home and I don't know what I was doing. I f e l t l o n e l y too, but I was so i l l , t h a t I don't even know what my mood was - l o n e l y or s i c k ? When I a t e , I used to throw up - I j u s t c o u l d n ' t get the food to s t a y down. But I d i d n ' t know what to do because my husband had always been t h e r e . A l l 11 p a r t i c i p a n t s d e s c r i b e d numerous l o s s e s which had occurred e i t h e r c o n c u r r e n t l y or s u c c e s s i v e l y . In most cases, the l o s s e s took on a c a s c a d i n g e f f e c t , where an i n i t i a l l o s s was r e l a t e d t o , or had l e d to f u r t h e r l o s s e s . P a r t i c i p a n t s expressed the overwhelming d i f f i c u l t i e s they encountered i n t r y i n g to cope with t h i s occurrence. One woman d e s c r i b e d her s i t u a t i o n i n the f o l l o w i n g way: I had a s t r o k e and I was l o s i n g the use of my hand. [I had surgery] but they s a i d there was nothing more t h a t c o u l d be done, and I would have to accept t h a t . I c o u l d n ' t hold anything. I c o u l d n ' t l i f t a n y t h i n g . There was no s t r e n g t h l e f t i n my hand or arm. Then I had to have a cancerous growth removed from my r i g h t l e g , which i s my good l e g . And then, w e l l , l o s i n g my husband. F e e l i n g s of h e l p l e s s n e s s and hopelessness were commonly d e s c r i b e d i n response to the death of a spouse. One woman d e s c r i b e d her f e e l i n g s f o l l o w i n g the death of her husband who had been her s o l e source of f r i e n d s h i p . She e x p l a i n e d , "I d i d n ' t have any f r i e n d s , and I never r e a l l y went out of the house v e r y much. When he d i e d , I j u s t d i d n ' t even know where to begin. I d i d n ' t know what to do". 31 Nine p a r t i c i p a n t s commented on the l o s s of f r i e n d s and d e s c r i b e d the impact t h i s had had on t h e i r l i v e s i n terms of l o n e l i n e s s and the l o s s of s u p p o r t i v e networks. One p a r t i c i p a n t d e s c r i b e d the s u c c e s s i v e l o s s of c l o s e f r i e n d s which had occurred i n c o n j u n c t i o n with the death of her s i s t e r . W e l l, ray s i s t e r passed away, and of course, when you get up to my age, a l o t of [ f r i e n d s ! have a l r e a d y gone. My three best f r i e n d s d i e d from cancer w i t h i n one year. Things l i k e t h a t ; i t takes you a long time to get over t h a t . I t was t e r r i b l e . Another p a r t i c i p a n t , who had never married, remarked on the f a c t t h at she had long o u t l i v e d most of her f r i e n d s . She e x p l a i n e d that n e a r l y a l l the women she had worked with had d i e d p r i o r to her r e t i r e m e n t . A l l 11 p a r t i c i p a n t s d e s c r i b e d l o s s e s i n p h y s i c a l f u n c t i o n i n g r e s u l t i n g from i l l n e s s and/or d i s a b i l i t y . In a d d i t i o n to the a c t u a l p h y s i c a l l o s s e s , they d e s c r i b e d the e x t e n s i v e emotional Impact that these l o s s e s had had on t h e i r l i v e s . One p a r t i c i p a n t d e s c r i b e d a l e n g t h y p e r i o d of i l l n e s s d u r i n g which her d o c t o r c o u l d not determine the cause of the i l l n e s s . She d e s c r i b e d the impact t h a t her i l l n e s s had on her emotional s t a t u s and l e v e l of m o t i v a t i o n : "I was f e e l i n g depressed, t i r e d , and h o r r i b l e and, oh, I f o r g e t j u s t e x a c t l y how I was f e e l i n g , but anyway, i t was t e r r i b l e , and I c o u l d have committed s u i c i d e , I'm t e l l i n g you". Another p a r t i c i p a n t d e s c r i b e d how her s u c c e s s i v e i l l n e s s e s and accompanying s u r g e r i e s impacted upon her, both p h y s i c a l l y and e m o t i o n a l l y : 32 F i r s t I had the colostomy, and then I had both hips r e p l a c e d . My l i f e has changed - i t ' s j u s t turned upside dovn s i n c e I've been s i c k . I had n e i t h e r the s t a b i l i t y of mind nor the s t a b i l i t y of emotions to accept e v e r y t h i n g . T h i s same woman went on to d e s c r i b e the f e a r she experienced as a r e s u l t of her impaired m o b i l i t y . "You see, I hadn't good balance e i t h e r , and e v e r y t h i n g - even somebody coming near me -not o n l y f r i g h t e n e d me of themselves, but the f a c t t h a t t h e i r coming near me - would I f a l l o v e r ? " One woman d e s c r i b e d the need t o come to terms with the r e a l i t y of her l o s s e s , and the disappointment she had to f a c e . The doctor t o l d my husband t h a t I would not improve beyond three y e a r s . I would go three years, and be on a p l a t e a u , and t h a t would probably be as high as I would get. And t h a t seems to have proved to be t r u e . That was a t e r r i b l e disappointment. Another woman d e s c r i b e d f e e l i n g s of f r u s t r a t i o n f o l l o w i n g a s t r o k e , which l e f t her unable to r e t a i n her previous l e v e l of independence: I'm used t o doing e v e r y t h i n g . Now, th e r e ' s l o t s of t h i n g s I can't do. I t ' s very f r u s t r a t i n g . I have a homemaker come i n once a week, but, w e l l , everyone Is d i f f e r e n t . You know, anybody strange that comes i n makes you f e e l a l i t t l e u p t i g h t . Another p a r t i c i p a n t d e s c r i b e d how she had become i l l and had d i f f i c u l t i e s r e s u l t i n g from s i d e e f f e c t s of her medi c a t i o n s . She d e s c r i b e d h e r s e l f as having been depressed and r e a l i z e d , o n l y i n r e t r o s p e c t , her need f o r s o c i a l c o n t a c t . She d e s c r i b e d her s i t u a t i o n as f o l l o w s : I was having many problems, and I j u s t d i d n ' t vant t o go anywhere. You know, I j u s t c o u l d n ' t be bothered with anyone. Nov I know how much I needed to get out and to be with people. I d i d n ' t know how to f e e l b e t t e r . 33 Nine o£ the p a r t i c i p a n t s expressed the importance o£ ma i n t a i n i n g s o c i a l c o n t a c t , but found t h i s to be very d i f f i c u l t due to p h y s i c a l l i m i t a t i o n s . One p a r t i c i p a n t d e s c r i b e d how n e i t h e r she, nor her f r i e n d s , were p h y s i c a l l y able t o maintain c o n t a c t with one another: A l l my f r i e n d s are o l d too. They can't get out, and i f I'm a b l e , I've got to go to them. And to go to somebody - I c o u l d n ' t . I hadn't the s t r e n g t h to get t h e r e , I c o u l d n ' t walk. And that was what d i d throw me - i t threw me badly. The Meed t o E s t a b l i s h F r i e n d s h i p s and Support Systems The need to e s t a b l i s h new support systems was f r e q u e n t l y viewed by p a r t i c i p a n t s as being r e l a t e d t o , or a d i r e c t r e s u l t of t h e i r l o s s e s p e r t a i n i n g to spouses and f r i e n d s . While some p a r t i c i p a n t s ' f r i e n d s and acquaintances had d i e d , others had experienced l o s s of c o n t a c t with f r i e n d s as a r e s u l t of decreased m o b i l i t y and d e p l e t e d energy l e v e l s , which rendered both themselves, and t h e i r f r i e n d s , i n c a p a b l e of m a i n t a i n i n g c o n t a c t with one another. A common theme was t h a t of l o n e l i n e s s , i s o l a t i o n , Inadequate a s s i s t a n c e , and a g e n e r a l lack of s u p p o r t i v e r e l a t i o n s h i p s . One woman d e s c r i b e d her r e a l i z a t i o n t h a t , not o n l y had she l o s t her spouse, but that t h i s l o s s a l s o r e s u l t e d In other l o s s e s i n her s o c i a l network and sources of s o c i a l support. She d e s c r i b e d how f r i e n d s t h a t she and her husband had once been c l o s e with were no longer w i l l i n g t o maintain c o n t a c t with her: 34 When you're man and wife, you're i n c l u d e d i n an awful l o t of t h i n g s . But when there's j u s t one, they f o r g e t you. And i n v a r i a b l y they phone - f r i e n d s I've known f o r years - and say t h a t , "oh, we must go out", or "we must do something". But they don't. I'm not the o n l y one. I've got f r i e n d s t h a t are widows too, and i t ' s the same t h i n g t h e r e . Another p a r t i c i p a n t , who had cared f o r her husband at home du r i n g a l e n g t h y i l l n e s s p r i o r t o h i s death, d e s c r i b e d t h i s same phenomenon. "When ray husband was s i c k , you kind of l o s e track of your f r i e n d s . You know, they j u s t don't come around the same". F o l l o w i n g a l e n g t h y h o s p i t a l i z a t i o n and i l l n e s s , one woman d e s c r i b e d the vast changes she was exposed to d u r i n g and f o l l o w i n g her r e c o v e r y . Her recount d e p i c t s the d i f f i c u l t i e s encountered i n t r y i n g to r e - i n t e g r a t e o n e s e l f back i n t o an independent l i f e s t y l e . I had had 3 years In bed, and the changes! I d i d n ' t r e a l i z e e v e r y t h i n g c o u l d change so f a s t and so much. You have to cope with i t , you have to accept i t , and you have to understand i t , and i t s j u s t - boom - how do you do that i n nothing f l a t ? I hadn't the people to t a l k t o . That's one t h i n g - I had to absorb e v e r y t h i n g , and understand i t by myself. There was nobody to t a l k t o . T h i s same woman went on to d e s c r i b e the s i t u a t i o n of being d i s c h a r g e d home from the h o s p i t a l without an adequate support system: It was q u i t e f r i g h t e n i n g . The r e a l i s m , the a c t u a l i t y h i t s you. You've been p r o t e c t e d , you've p r o t e c t e d y o u r s e l f , and then suddenly you're t h r u s t i n t o e v e r y t h i n g , and i t j u s t h i t s you. E v e r y t h i n g has changed so much, and a l l of a sudden, from a narrow l i t t l e h o s p i t a l c i r c l e , you're t h r u s t Into t h i s . And i t throws you to t r y and absorb, to adapt, to become u s e f u l a g a i n . Another p a r t i c i p a n t d e s c r i b e d how the death of her husband had l e f t a v o i d i n her l i f e i n terms of support. She e x p l a i n e d , 35 "there was d e f i n i t e l y a gap, because t h i s death] was so sudden. And then I had to r e a l i z e , I was a l l a l o n e . I d i d n ' t know what to do". Four p a r t i c i p a n t s d e s c r i b e d problems they encountered as a r e s u l t of having to become more Independent f o l l o w i n g the deaths of t h e i r spouses. One woman d e s c r i b e d the r e a l i z a t i o n t h a t her l e v e l of dependency upon her husband had l e f t her alone and without b a s i c l i f e s k i l l s . Over the years, my husband made me very dependent upon him. He d i d the t a l k i n g . I never wrote a check or looked a f t e r any money. And then I found myself completely a l o n e . I have no r e l a t i v e s a t a l l . No r e l a t i v e s , no c h i l d r e n , no f a m i l y . I was t r u l y a l o n e . I t was t e r r i b l e . Seven p a r t i c i p a n t s d e s c r i b e d t h e i r d e s i r e to f e e l p r o d u c t i v e and u s e f u l . They e x p l a i n e d how t h e i r p h y s i c a l s t a t u s had rendered them unable to f u n c t i o n a t the l e v e l to which they were accustomed. Three of the 5 p a r t i c i p a n t s who had been widowed commented on the r o l e l o s s they had experienced, and d e s c r i b e d how c e r t a i n elements of t h e i r r o l e as "wife" had served to i n s t i l l i n them f e e l i n g s of u s e f u l n e s s and purpose. One gentleman, who had been diagnosed with a p r o g r e s s i v e l y d i s a b l i n g d i s e a s e , d e s c r i b e d h i s f e e l i n g s r e g a r d i n g h i s l o s s of work r o l e and the d i f f i c u l t t r a n s i t i o n p e r i o d between -his f u l l -time work r o l e , and having to adapt t o , and d e a l with a d e g e n e r a t i v e i l l n e s s : A f t e r you work a l l your l i f e , and j u s t suddenly, i t has to stop, i t ' s a t e r r i b l e adjustment. That was more shocking to me than even going to the h o s p i t a l . I c o u l d n ' t b e l i e v e i t . I kept wondering, "when i s the p a r t y over"? "When do I go back"? And I had to r e a l i z e t h a t i t was no more, and t h a t was the shocker f o r me. 36 The Role of the ADC Program In Meeting C l i e n t s ' weeds This s e c t i o n presents data p e r t a i n i n g to p a r t i c i p a n t s ' p e r c e p t i o n s .of the way i n which the ADC programs i n g e n e r a l , a s s i s t e d them in meeting t h e i r needs. T h i s data emerged as a r e s u l t of p a r t i c i p a n t s being unable to d i v o r c e the n u r s i n g care provided from the o v e r a l l b e n e f i t s of the program. The o v e r a l l b e n e f i t s expressed by p a r t i c i p a n t s i n c l u d e d a s p e c t s of care from a l l s t a f f members, i n t e r a c t i o n s with other c l i e n t s i n the program, and the g e n e r a l atmosphere of the program environment. T h i s data suggests that n u r s i n g care i s p e r c e i v e d as an i n t e g r a l p a r t of the ADC programs. Data a n a l y s i s y i e l d e d four g e n e r a l themes t h a t were p e r c e i v e d as s i g n i f i c a n t to p a r t i c i p a n t s . These were (a) access to emotional support, (b) s o c i a l o u t i n g s and group a c t i v i t i e s , (c) enhancement of s e l f - e s t e e m , c o n f i d e n c e , and f e e l i n g s of belongingness, and (d) access to s i n c e r e and i n d i v i d u a l i z e d care . Access to Emotional Support In a d d i t i o n t o d e v e l o p i n g a network of f r i e n d s , p a r t i c i p a n t s a l s o d e s c r i b e d having access to a more Intense l e v e l of emotional support through the ADC programs. 37 Ten of the 11 p a r t i c i p a n t s remarked on the f a c t t h a t being exposed to so many olde r people made them r e a l i z e t h a t there i s "always someone worse o f f than y o u r s e l f " . T h i s r e a l i z a t i o n seemed to h e l p them put t h e i r own s i t u a t i o n s and f u t u r e s i n p e r s p e c t i v e , which enabled them to cope more e f f e c t i v e l y with t h e i r c u r r e n t d i f f i c u l t i e s . P a r t i c i p a n t s a l s o noted commonalities between themselves and other c l i e n t s with regard to d i s a b i l i t i e s , i l l n e s s e s , and l o s s e s , which seemed t o promote a sense of k i n s h i p and purpose. One p a r t i c i p a n t d e s c r i b e d t h i s i n the f o l l o w i n g way: It makes you r e a l i z e t h a t l i f e i s f u l l of t r o u b l e s as you get o l d e r , which I d i d n ' t r e a l i z e b e f o r e . The t h i n g i s , you're out with people your own age, and you see people worse o f f than you, and i t helps you to cope with t h i n g s . You get a chance to help people, and i t g i v e s you a reason. Another p a r t i c i p a n t e x p l a i n e d how being exposed to others who were worse o f f than she, helped her to f o r g e t her own t r o u b l e s : "You see, there's always somebody worse o f f than you are , and i t helps you to get away from your own t r o u b l e s . You s t o p d w e l l i n g on t h i n g s , and you need t h a t " . One p a r t i c i p a n t who had l o s t her husband, e x p l a i n e d how s i m i l a r i t i e s i n people's s i t u a t i o n s served to promote one's a b i l i t y to cope through peer support. When you're m a r r i e d , and you've got your p a r t n e r and you more or l e s s have b u i l t your l i f e with f r i e n d s t h a t are married. But I ' l l t e l l you, when you l o s e your husband or your w i f e , those f r i e n d s don't want you. But the f r i e n d s you meet at the c e n t r e , they're f r i e n d s , but they're a l s o a l l i n the same s i t u a t i o n as you. They're widows, and they have to cope with that too. So, we cope t o g e t h e r . One woman d e s c r i b e d the importance of having people to t a l k 38 to f o l l o w i n g the death of her husband, and e x p l a i n e d that the importance of a c c e s s i n g emotional support was onl y r e a l i z e d i n r e t r o s p e c t : I t was n i c e t o have people to t a l k t o , and I d i d n ' t r e a l i z e t h i s u n t i l a f t e r w a r d s . At the beginning, j u s t a f t e r my husband d i e d , I was too busy worrying about what to do to r e a l l y worry about whom to t a l k t o . I don't even know what I was f e e l i n g at the time. She went on to d e s c r i b e her p e r c e p t i o n s of the nature of support she experienced: I never knew t h i s k i n d of help e x i s t e d . I f e e l l i k e someone i s g i v i n g me a hand, you know? Someone i s h o l d i n g my hand and g u i d i n g me a l i t t l e . I have t h i s f e e l i n g that somebody i s g i v i n g me a boost, and a shoulder to lean on, and I don't f e e l so t e r r i b l y a l o n e . Another woman d e s c r i b e d the program as being h e l p f u l i n a l l o w i n g her to make the t r a n s i t i o n from h o s p i t a l back to her home i n the community. She e x p l a i n e d , "I owe them more than they r e a l i z e . They j u s t 3ay, %oh, i t ' s p a r t of our work, and we're gl a d to have helped', but they don't r e a l i z e what a d i s o r i e n t e d , fuzzy t h i n g I was. And how f r i g h t e n e d I was". One woman expressed the importance of having people to t a l k t o , other than f a m i l y members. She s a i d , " I t was the o n l y t h i n g t h a t saved me, because i t gave me something to do, and somebody f o r me to t a l k to other than the f a m i l y " . Access t o S o c i a l Outings and Group A c t i v i t i e s A l l p a r t i c i p a n t s p e r c e i v e d the t r i p s and out i n g s to be a v e r y important aspect of the ADC program. I t appeared as 39 though, r e g a r d l e s s o£ where the group was going, the most important aspects were the o p p o r t u n i t i e s to get away from the home environment, and to be with other people. F i v e p a r t i c i p a n t s e x p l a i n e d t h a t , because they always knew about the t r i p s i n advance, they could look forward to them. One woman e x p l a i n e d , " I t ' s something to do f o r the day, but then you see, you plan ahead f o r these t o u r s . So, i f you're going on one of the t r i p s , you've got something to look forward t o " . Another p a r t i c i p a n t e x p l a i n e d t h a t , f o r her, i t was the a b i l i t y to get out that was Important. "I hadn't been able to get out. I have a r t h r i t i s and o s t e o p o r o s i s , and I'm not steady on my f e e t . They take you out, and they have the s t a f f to help you If you need i t " . A l l p a r t i c i p a n t s d e s c r i b e d v a r i o u s s p e c i a l events and c e l e b r a t i o n s organized by the s t a f f a t t h e i r c e n t r e s . One woman d e s c r i b e d these c e l e b r a t i o n s as something to which t o look forward. "You see, they have these l i t t l e do's a l l the time -l i k e f o r Christmas, New Year's, V a l e n t i n e s Day - l i t t l e p a r t i e s . You have something t o look forward t o " . Another p a r t i c i p a n t d e s c r i b e d the s p e c i a l f e s t i v i t i e s as being p a r t i c u l a r l y important for those c l i e n t s who had no f a m i l y with whom to c e l e b r a t e . She went on to d e s c r i b e her own ex p e r i e n c e s : "I've had some of the best times t h e r e , you know? At Christmas, they make i t as f e s t i v e as they can, and same f o r New Years. They decorate the t a b l e s and f i x e v e r y t h i n g up t h e r e . I t ' s j u s t so n i c e " . P a r t i c i p a n t s a l s o d e s c r i b e d the I n d i v i d u a l c e l e b r a t i o n s o£ c l i e n t s ' b i r t h d a y s . One p a r t i c i p a n t e x p l a i n e d , "In the ne w s l e t t e r , they l i s t a l l the b i r t h d a y s , and when i t ' s yours, they a l l s i n g Happy B i r t h d a y , and gi v e you a l i t t l e cake. I t ' s so n i c e - you f e e l q u i t e s p e c i a l " . Three p a r t i c i p a n t s s p e c i f i c a l l y mentioned the o p p o r t u n i t y for laughter as being important to them. One woman d e s c r i b e d her experience d u r i n g a Halloween p a r t y : I ' l l t e l l you, some af t e r n o o n s when we've been t h e r e , l i k e f o r Halloween, I laughed u n t i l I was s i c k . I had a stomach ache. They had a l l these things you co u l d d r e s s up i n th e r e , and they had me dressed up i n so many d i f f e r e n t t h i n g s , and r e a l l y , we laughed so hard, and I was up dancing i f you p l e a s e ! A v a r i e t y of entertainment was a l s o noted as being p e r c e i v e d p o s i t i v e l y by c l i e n t s . S t o r y - t e l l i n g , c h o i r s , bands, dances, and other forms of musical entertainment were d e s c r i b e d as "f u n " , " i n t e r e s t i n g " , "enjoyable", and "humorous". One p a r t i c i p a n t s t a t e d : We have entertainment too. We had t h i s western s i n g e r , and he played the g u i t a r and he was very good. And he t o l d l i t t l e s t o r i e s between songs. We laughed so hard. Sometimes we laugh the whole time we're t h e r e . A l l p a r t i c i p a n t s e x p l a i n e d t h a t a t t e n d i n g the ADC program was very s i m p l y a chance to get out and be with other people. One woman d e s c r i b e d the o p p o r t u n i t y to meet and get to know other c l i e n t s * f a m i l i e s as w e l l as being able to share outings with her spouse. She e x p l a i n e d , "Well, I'm a very s o c i a l person, and I r e a l l y l i k e the people. I've g o t t e n to know them w e l l , and t h e i r f a m i l i e s too. When we have s p e c i a l o u t i n g s , [my 41 husband] n e a r l y always comes al o n g " . One woman ex p l a i n e d the importance of being able to get out d u r i n g the day time hours, s i n c e she d i d not f e e l she should go out at n i g h t . When you're by y o u r s e l f , you don't go out at n i g h t . And i t i s n ' t a d v i s a b l e to go out at n i g h t . And you don't l i k e coming home to an empty house. Where i f you've been out i n the day time, you're q u i t e happy and contented to s t a y at home i n the evening. She went on to d e s c r i b e her g e n e r a l p e r c e p t i o n s r e g a r d i n g her decreased m o b i l i t y and the o p p o r t u n i t y to get out without having to r e l y on her c h i l d r e n . If I d i d n ' t have t h a t c e n t r e , I don't know what I would have done. I mean, sure, my g i r l s are g r e a t , but you can't j u s t keep going out - you can't get around. And i f you're stuck at home, t h a t ' s no good. I enjoy the c e n t r e to the p o i n t where I miss i t i f I don't go. I don't know what I'd do i f i t c l o s e d . A l l p a r t i c i p a n t s expressed the importance of e s t a b l i s h i n g f r i e n d s h i p s with other people. E i g h t p a r t i c i p a n t s commented on how d i f f i c u l t i t had become to make new f r i e n d s as they aged, and how h e l p f u l i t was to be among people t h e i r own age with i n t e r e s t s s i m i l a r to t h e i r own. One p a r t i c i p a n t d e s c r i b e d how she was v e r y r e l u c t a n t to t r y ADC. Although her f a m i l y had t r i e d to persuade her to t r y the program, she r e s i s t e d the i d e a . She e x p l a i n e d that the thought of being p a r t of a group which c o n s i s t e d s o l e l y of e l d e r l y people was not a p p e a l i n g . In t h i s f o l l o w i n g e x c e r p t , she d e s c r i b e d how her outlook on t h i s matter changed as she developed an i n c r e a s e d understanding of the I n d i v i d u a l group members: 42 I t r e a l l y has changed the way I look a t l i f e now, and a t one time, I wouldn't have thought of j o i n i n g any pl a c e where there were a l l o l d e r people. I've met some of the n i c e s t people i n t h e i r 80's and 90's. But now I can see what these o l d e r people can do, and I can, w e l l , sympathize with them -they're a l l so a f f e c t i o n a t e . We a l l need a f f e c t i o n . I've made some r e a l l y wonderful f r i e n d s there, and when I can't go, I miss i t t e r r i b l y . Another p a r t i c i p a n t commented on the importance of doing things t o g e t h e r . She e x p l a i n e d t h a t although they might be working on a p r o j e c t , the r e a l l y Important p a r t was the f r i e n d s h i p and f e e l i n g s of group coh e s i v e n e s s . She s a i d : Well, everyone's so n i c e and f r i e n d l y , and you see, we have the chance to do t h i n g s t o g e t h e r . We might be working on a p r o j e c t or something, but i t ' s r e a l l y the s o c i a l p a r t t h a t ' s r e a l l y e n j o y a b l e . Everyone t a l k s and laughs t o g e t h e r . I t ' s so n i c e . Another p a r t i c i p a n t e x p l a i n e d that going to ADC provided her with the o p p o r t u n i t y to do t h i n g s t h a t she was abl e to manage, d e s p i t e her p h y s i c a l l i m i t a t i o n . T h i s seemed to gi v e her a sense of achievement and accomplishment. She e x p l a i n e d : "You see, i t ' s some place f o r me to go where I can do t h i n g s . I was always so ambitious. And I j u s t c o u l d n ' t do c e r t a i n t h i n g s anymore. There are things t h e r e that I can do". One woman d e s c r i b e d a s i t u a t i o n i n which another c l i e n t was c e l e b r a t i n g a b i r t h d a y . Her d e s c r i p t i o n i l l u s t r a t e s the importance of f r i e n d s h i p s : I t was her b i r t h d a y , so she got a cake with a can d l e , and we a l l sang Happy B i r t h d a y . She doesn't have any f a m i l y , and do you know, there were t e a r s i n her eyes. She was so emotional, because of everybody s i n g i n g to her, and you know, you c o u l d t e l l she enjoyed i t so much - j u s t t o thin k t h a t she had f r i e n d s that would bother. F r i e n d s h i p s were a l s o seen as important i n h e l p i n g c l i e n t s d e a l with s p e c i f i c problems and l o s s e s . To I l l u s t r a t e the importance of f r i e n d s h i p s d u r i n g times of l o s s and g r i e f , one p a r t i c i p a n t d e s c r i b e d the f o l l o w i n g s i t u a t i o n i n which a c l i e n t ' s mother had j u s t d i e d : And one of the people - her mother passed away on Monday. She s a i d t h a t she d i d n ' t know what she was going to do, and then she s a i d , "Yes I do - with a l l my f r i e n d s around here, who c o u l d be lonesome?" These t h i n g s r e a l l y make you t h i n k . Ten p a r t i c i p a n t s d e s c r i b e d v a r i o u s games t h a t they p a r t i c i p a t e d i n while at the c e n t r e . Three commented on the humour and laughter i n v o l v e d d u r i n g the games as the most important p a r t of the a c t i v i t y . Two p a r t i c i p a n t s e x p l a i n e d t h a t p l a y i n g Scrabble and other word games were h e l p f u l i n keeping t h e i r minds a l e r t and a c t i v e . Ten of the 11 p a r t i c i p a n t s were c u r r e n t l y t a k i n g p a r t i n e x e r c i s e programs at t h e i r c e n t r e s . A l l 10 commented on the f a c t t h a t the e x e r c i s e s were geared toward people with some d i s a b i l i t i e s and l i m i t e d p h y s i c a l c a p a b i l i t i e s . One woman ex p l a i n e d , "you see, I'm not a b l e to do a l o t of (the e x e r c i s e s ] , but I can j u s t s i t i n my c h a i r and do whatever I'm a b l e to do.". Another p a r t i c i p a n t e x p l a i n e d t h a t i t was o n l y a f t e r s t a r t i n g ADC t h a t she became conscious of the importance of e x e r c i s i n g r e g u l a r l y : " I t ' s r e a l l y made me c o n s c i o u s of e x e r c i s i n g . When you're home alone and can't get out, what can you do? I d i d n ' t know how to e x e r c i s e , w e l l , a t l e a s t not the r i g h t way!" 44 Enhancing Self-Esteem. Confidence, and F e e l i n g s of Belongingness A l l 11 p a r t i c i p a n t s ' responses i n d i c a t e d that being i n v o l v e d i n the ADC programs provided them with a sense of group membership and enhanced t h e i r f e e l i n g s of belongingness. S i x p a r t i c i p a n t s r e p o r t e d t h a t they had taken on a " h e l p i n g r o l e " at the c e n t r e , and f e l t t h a t t h i s provided them with i n c e n t i v e s and o p p o r t u n i t i e s which f o s t e r e d f e e l i n g s of u s e f u l n e s s and s e l f -r e s p e c t . Of the 6 p a r t i c i p a n t s who r e p o r t e d having a " h e l p i n g r o l e " at the program, 4 e x p l a i n e d that the a b i l i t y to "give something back" to the program was v e r y important to them, and made them f e e l good about themselves. The h e l p i n g r o l e s d e s c r i b e d i n c l u d e d a c t i v i t i e s such as p a r t i c i p a t i o n on c l i e n t c o u n c i l s , p r o v i d i n g feedback and input r e g a r d i n g programming, a t t e n d i n g s p e c i a l meetings, a s s i s t i n g other c l i e n t s with mental and p h y s i c a l d e f i c i t s , and p r o v i d i n g other c l i e n t s w i t h emotional support. E i g h t of the 11 p a r t i c i p a n t s r e p o r t e d e x p e r i e n c i n g v a r y i n g degrees of l o n e l i n e s s and i s o l a t i o n p r i o r to a t t e n d i n g the ADC program. A l l i d e n t i f i e d a l a c k of m o b i l i t y and a decreased energy l e v e l , and/or the l o s s of spouse and s i g n i f i c a n t o t h e r s as c o n t r i b u t i n g to t h e i r f e e l i n g s of l o n e l i n e s s . These e i g h t p a r t i c i p a n t s a l l expressed the p e r c e p t i o n that t h e i r f e e l i n g s of l o n e l i n e s s have decreased s i n c e a t t e n d i n g ADC, and f e l t t h i s was 45 a r e s u l t of having a sense of group membership and belongingness. One woman e x p l a i n e d : Well, i t ' s got me out of f e e l i n g l o n e l y . Before, I had to s t a y home alone and there were many v e r y long days, b e l i e v e me. I had nobody. Now I can go out a few times a week. I look forward to going and I enjoy being one of the gang. Another woman d e s c r i b e d a d e p r e s s i v e episode which had rendered her unable to reco g n i z e her extreme l o n e l i n e s s . W e ll, at f i r s t I agreed to t r y [ADCl once, although I r e a l l y d i d n ' t f e e l l i k e i t . Once I'd been a few times, I couldn't p i c t u r e what i t would be l i k e NOT to go. I t r e a l l y saved me - I was so l o n e l y , o n l y I d i d n ' t r e a l i z e how much. Another p a r t i c i p a n t d e s c r i b e d her Involvement In v a r i o u s a c t i v i t i e s and commented on her f a m i l y ' s p e r c e p t i o n s of how ADC had impacted upon her . I have been s o r t of Involved i n meetings they have t h e r e , and t h i n g s l i k e t h a t , you know. And I r e a l l y enjoy i t thoroughly. A f t e r I'd been going a while, even my f a m i l y s a i d , you know, i t ' s too bad that you d i d n ' t s t a r t going before; i t ' s given you an e n t i r e l y new outlook on l i f e . Tvo p a r t i c i p a n t s s p e c i f i c a l l y noted the e f f e c t that a t t e n d i n g ADC had had on t h e i r d e s i r e to maintain t h e i r p h y s i c a l appearances. One woman d e s c r i b e d how the s t a f f and c l i e n t s always n o t i c e "what you're wearing and comment when you appear i n something new". Another woman d e s c r i b e d the impact t h a t the s t a f f and c l i e n t s had on her own m o t i v a t i o n r e g a r d i n g appearance. " I t makes me f e e l l i k e I have to get my h a i r done, keep my c l o t h e s n i c e - I want t o look smart when I go. I always d i d , but I c o u l d have s l i p p e d q u i t e e a s i l y . " F i v e p a r t i c i p a n t s noted t h a t a t t e n d i n g the program had helped them to Increase t h e i r c o n f i d e n c e which f u r t h e r enabled them to i n t e g r a t e with, and r e l a t e to other c l i e n t s . One woman de s c r i b e d her intense f e e l i n g s of hopelessness and h e l p l e s s n e s s f o l l o w i n g her discharge from a lengthy h o s p i t a l i z a t i o n f o l l o w i n g two s u r g e r i e s . She expressed the i n a b i l i t y to make d e c i s i o n s and c e l t c o m p l e t e l y overwhelmed by people. T h i s woman d e s c r i b e d how the ADC environment helped her to a d j u s t , and r e g a i n a l e v e l of c o n f i d e n c e that enabled her to manage the problems and d i f f i c u l t i e s t h a t had p r e v i o u s l y i n c a p a c i t a t e d her. when I came home [from the h o s p i t a l ] , e v e r y t h i n g had changed so much. I was so f r i g h t e n e d . I t was t o t a l l y overwhelming. Going to ADC - w e l l , for one t h i n g , I got used to people a g a i n . And I got used to a c c e p t i n g t h i n g s . And I got used to the changes. I've gotten s t r o n g e r , and now that I'm s t r o n g e r , I can handle t h i n g s and jump the h u r d l e s . Another p a r t i c i p a n t d e s c r i b e d how the program helped her to f e e l more comfortable i n being with other people. She s a i d , "Yes, f o r a while t h e r e , I d i d n ' t l i k e going o u t s i d e . Now i t doesn't bother me. I t takes you out of your s h e l l " . Another woman a l s o d e s c r i b e d the d i f f i c u l t y she had p r e v i o u s l y experienced i n f e e l i n g comfortable and c o n f i d e n t i n meeting new people. She ex p l a i n e d how a t t e n d i n g ADC helped her to overcome t h i s : "You get to know so many people, and I mean, now I wouldn't thi n k of f e e l i n g embarrassed at meeting someone or t a l k i n g to someone. I don't f e e l shy or a n y t h i n g . You can t a l k to anyone". Access t p S i n c e r e and i n d i v i d u a l i z e d Care A l l p a r t i c i p a n t s d e s c r i b e d t h e i r p e r c e p t i o n s of how the s t a f f know each c l i e n t on an i n d i v i d u a l b a s i s . T h i s was p e r c e i v e d as important i n terms of the c l i e n t s r e c e i v i n g c a r e and a t t e n t i o n deemed a p p r o p r i a t e to t h e i r own s i t u a t i o n s and c i r c u m s tanc e s . One p a r t i c i p a n t d e s c r i b e d her p e r c e p t i o n s of the importance of being viewed and t r e a t e d as an i n d i v i d u a l , d e s p i t e being a member of a l a r g e r group: They work on each I n d i v i d u a l a c c o r d i n g to what t h e i r problems are, and they t r y to see i f they can get them doing a l i t t l e b i t , or g e t t i n g them i n t e r e s t e d . They r e a l l y work on t a k i n g them i n t o t h e i r c o n f i d e n c e a l o t . Another p a r t i c i p a n t d e s c r i b e d t h i s same p e r c e p t i o n , and s a i d , "You're not j u s t a group. And when they do the e x e r c i s e s , they make them so t h a t i f there's one that you would l i k e to do, they do i t " . She went on to e x p l a i n how the s t a f f work with i n d i v i d u a l s f o r the purposes of m o t i v a t i o n and i n c r e a s e d involvement: " L i k e i f we're e x e r c i s i n g with the b a l l , and someone i s n ' t r e a c t i n g to c a t c h i t , they seem to have a way of t r y i n g to get them i n t e r e s t e d i n what i s being done". A l l p a r t i c i p a n t s expressed t h e i r p e r c e p t i o n s of the importance of s i m p l y "having someone t h e r e " : a presence. One p a r t i c i p a n t d e s c r i b e d her p e r c e p t i o n s of people's needs i n the f o l l o w i n g way: "No, I t h i n k these c e n t r e s are good, because e l d e r l y people need - how should I say i t - i t ' s not e x a c t l y h e l p , i t ' s not e x a c t l y guidance, but they do need somebody t h e r e . Someone j u s t to be t h e r e " . T h i s same p a r t i c i p a n t d e s c r i b e d an i n s t i n c t i v e and s i n c e r e type of care that she p e r c e i v e d as important. "There's a l o t of c a r e . Care that comes I n s t i n c t i v e l y . I t ' s not the k i n d of care 48 where people want to show how good they are, i t ' s care because they r e a l l y do c a r e " . She went on to compare t h i s a t t i t u d e to that of others she had encountered. "I t h i n k I'm very f o r t u n a t e to have people as k i n d l y , and t h a t l i k e doing I t . They l i k e to h e l p , and they l i k e o l d people, and many people don't. Many d o c t o r s don't". The Role of the Nurse i n A s s i s t i n g C l i e n t s To Meet T h e i r Needs The data presented i n t h i s s e c t i o n p e r t a i n s to p a r t i c i p a n t s ' responses that focused s p e c i f i c a l l y on the r o l e of the ADC nurses i n a s s i s t i n g them t o meet t h e i r i d e n t i f i e d needs. Two g e n e r a l themes emerged from the data with regard to the nurse's r o l e : (a) the p r o v i s i o n of c o u n s e l l i n g and emotional support, and (b) h e a l t h monitoring s e r v i c e s . C o u n s e l l i n g S e r v i c e s and Emotional Support Nine of the 11 p a r t i c i p a n t s i n d i c a t e d that they u t i l i z e d the c o u n s e l l i n g s e r v i c e s provided by the ADC nurses on a r e g u l a r b a s i s . From the d e s c r i p t i o n s provided by the p a r t i c i p a n t s , access to c o u n s e l l i n g was a u s e f u l source of p s y c h o s o c i a l and emotional support. As one woman e x p l a i n e d : "(The nurses] have been tremendously s u p p o r t i v e , I would t h i n k t h a t i n the l a s t 2 years, I have c o n s u l t e d with the nurses every time I went [to 49 ADC]. For me, I think I t ' s mainly the emotional support". Nine p a r t i c i p a n t s d e s c r i b e d how the nurses' c o u n s e l l i n g s e r v i c e s helped them to cope with, and overcome v a r i o u s d i f f i c u l t i e s , problems, and concerns which were impeding t h e i r a b i l i t i e s to meet t h e i r own needs. P a r t i c i p a n t responses i n d i c a t e d that t h e r e were f i v e important f a c e t s to the nurse's c o u n s e l l i n g r o l e which seemed Important In the e f f e c t i v e n e s s of the c o u n s e l l i n g p r o c e s s . These were: (a) the nurses' presence, (b) a focus on i n d i v i d u a l i z e d c a r e , (c) the nurses' o b s e r v a t i o n a l s k i l l s , (d) the nurses' knowledge base, and (e) the nurses' communication and i n t e r p e r s o n a l s k i l l s . An a d d i t i o n a l theme that was present throughout p a r t i c i p a n t s ' d e s c r i p t i o n s In a l l f i v e f a c e t s , was that of c e r t a i n c h a r a c t e r i s t i c s and/or behaviors t h a t were e x h i b i t e d by the nurses. P a r t i c i p a n t s used words such as compatible, n i c e , sympathetic, s u p p o r t i v e , concerned, i n t e r e s t e d , understanding, approachable, c o n s i d e r a t e , and a t t e n t i v e to d e s c r i b e v a r i o u s c h a r a c t e r i s t i c s of the nurses. The nurses' presence. Ten of the 11 p a r t i c i p a n t s i d e n t i f i e d the importance of the nurse s i m p l y "being t h e r e " or "being p r e s e n t " i n the event that her a s s i s t a n c e should be r e q u i r e d . T h i s appeared t o be of p a r t i c u l a r s i g n i f i c a n c e to p a r t i c i p a n t s i n terms of i n c r e a s i n g t h e i r f e e l i n g s of s a f e t y and s e c u r i t y . One p a r t i c i p a n t 50 e x p l a i n e d her p e r c e p t i o n s i n the f o l l o w i n g way: "She's j u s t there a l l the time i n case we need to t a l k to her. Anybody can go to her i f they have a problem or need h e l p . Knowing she's t h e r e , w e l l , i t j u s t makes you f e e l s a f e " . Another p a r t i c i p a n t e x p l a i n e d that she would not at t e n d ADC i f there were no nurse p r e s e n t . She provided the f o l l o w i n g e x p l a n a t i o n : I wouldn't go i f there wasn't a nurse there because I have gone the odd time f e e l i n g p o o r l y . When you get ther e , you t a l k to [the nurse 1 about i t , and you come home f e e l i n g good. No, I wouldn't go without the nurse. Another p a r t i c i p a n t d e s c r i b e d her in c r e a s e d f e e l i n g s of s a f e t y and s e c u r i t y based on having the nurse present a t the ADC c e n t r e , and e x p l a i n e d t h a t t h i s was l i k e l y a normal response of a l l c l i e n t s . She e x p l a i n e d : I wouldn't f e e l as secure as I do now i f there wasn't a nurse, I t ' s normal, I t h i n k , of everyone... I f e e l more secure when I know th a t somebody competent i s t h e r e . You never know what problems y o u ' l l have. In a d d i t i o n to having the nurse there to t a l k t o , a l l 11 p a r t i c i p a n t s expressed the n e c e s s i t y of having a nurse a v a i l a b l e to handle emergency s i t u a t i o n s . S i x p a r t i c i p a n t s i n d i c a t e d t h a t the nurses accompany c l i e n t s on day t r i p s and outings f o r t h i s purpose. One p a r t i c i p a n t e x p l a i n e d why she f e l t t h i s was important: "They've always been there when you need them, which I t h i n k i s e s s e n t i a l . There's so many o l d people, and anything can happen. I t ' s n i c e to have them there i f you run i n t o d i f f i c u l t i e s " . Another p a r t i c i p a n t expressed the importance of having a 51 nurse a v a i l a b l e f o r emergencies, and I d e n t i f i e d the Importance of the nurse's a b i l i t y to remain calm i n the event of an emergency s i t u a t i o n . Everybody there has v a r i o u s ailments...and of course, people come i n who have had s t r o k e s , and people whose mental a b i l i t y i s f a i l i n g . You need somebody with good f i r s t a i d and r e a l a b i l i t y . If you f a l l on your face, she won't f l a p . You need somebody there t h a t ' s got the c a p a b i l i t i e s - i t ' s necessary a t these p l a c e s . In a d d i t i o n to h a n d l i n g medical emergencies, 6 p a r t i c i p a n t s a l s o d e s c r i b e d p a r t i c u l a r groups of c l i e n t s t h a t r e q u i r e d the presence of a nurse to a s s i s t them with v a r i o u s a c t i v i t i e s of d a i l y l i v i n g . One p a r t i c i p a n t e x p l a i n e d how v a r i o u s c l i e n t s have s p e c i f i c needs which the nurse addresses. "Well, p a r t i c u l a r l y on a Tuesday, t h i s group that I go with are Parkinson's and they o f t e n have t r o u b l e eating...and need l o t s of help. The nurse helps them." Si x p a r t i c i p a n t s e x p l a i n e d t h a t the nurse i s a l s o there to help those c l i e n t s who need a s s i s t a n c e with t o i l e t i n g and ambulating. I n d i v i d u a l i t y of c a r e . E i g h t p a r t i c i p a n t s s p e c i f i c a l l y noted t h a t the nurses provided v e r y i n d i v i d u a l i z e d care to a l l c l i e n t s i n the program. Despite the group format of each ADC program, p a r t i c i p a n t s seemed to f e e l t h a t t h i s I n d i v i d u a l i z e d care a s s i s t e d them in meeting t h e i r own i n d i v i d u a l needs, while a l l o w i n g them to s i m u l t a n e o u s l y b e n e f i t from the s o c i a l context provided by the group environment. One woman d e s c r i b e d how the nurse a t her 52 centre "kept t r a c k " of each person. Everybody i n t h e c e n t r e gets help from [the n u r s e ] , and anybody t h a t ' s s i c k - you're kept charge o f . You're a person, and you're accepted as a person. I t ' s not j u s t a group or an o v e r a l l . There's r e a l l y q u i t e a b i t of i n d i v i d u a l i t y i n i t . Another p a r t i c i p a n t d e s c r i b e d her own o b s e r v a t i o n s of how the nurses provided i n d i v i d u a l i z e d care to a new c l i e n t d u r i n g her i n i t i a l exposure to the ADC program. (The nurses] have got t h e i r eye on everyone t h e r e . One of the women th a t comes has Parkinson's, and when she f i r s t came she wouldn't t a l k to anyone. I used to watch the nurses - they'd go and s i t and t a l k with her, and t r y to get her to come and do t h i n g s . They r e a l l y spent a l o t of time with her. You should see her now - she laughs! You'd never know i t was the same person. One p a r t i c i p a n t f e l t t h a t the i n d i v i d u a l i z e d care enabled the nurses to encourage i n d i v i d u a l c l i e n t s to the extent a p p r o p r i a t e f o r that p a r t i c u l a r person. She e x p l a i n e d , "Even when you have those l i t t l e a c c i d e n t s - you're on your own. But the nurse w i l l h e lp you - encourage you to help y o u r s e l f . And i t ' s up to you, whether you do It or you don't". Another p a r t i c i p a n t a l s o expressed her p e r c e p t i o n s of the Importance of i n d i v i d u a l i z e d c a r e . She e x p l a i n e d t h a t the nurses know each person v e r y w e l l , and t h i s enables them to provide i n d i v i d u a l c a r e . She a l s o e x p l a i n e d t h a t because the nurse knows each c l i e n t so w e l l , she knows e x a c t l y what each person i s capable of a c h i e v i n g . She e x p l a i n e d , "You see, she knows each one as an i n d i v i d u a l , and she s t u d i e s you. She knows your c h a r a c t e r . She knows your l i k e s and d i s l i k e s , your a b i l i t i e s , and she knows your thoughts". 53 One p a r t i c i p a n t i n d i c a t e d t hat she d i d not have much communication with the nurse at her ce n t r e other than i n the context of a s o c i a l c o n v e r s a t i o n . When asked how o f t e n she co n s u l t e d with the nurse about a s p e c i f i c problem of concern, she e x p l a i n e d the f o l l o w i n g : "Well, I 'see' [the nurse] but I don't have much of a chat with her. She's p r e t t y busy". When asked i f she might c o n s u l t with the nurse more f r e q u e n t l y i f the nurse had more time, she s t a t e d , "Yes, I might see her more i f she wasn't so busy". The i s s u e of the nurses having adequate time f o r each c l i e n t , as r a i s e d by t h i s p a r t i c i p a n t , i n d i c a t e s the p o s s i b i l i t y of a p o t e n t i a l problem. This p a r t i c i p a n t f u r t h e r e x p l a i n e d t h a t a l a r g e percentage of the nurse's time seemed to be a l l o t t e d to the p r o v i s i o n of p h y s i c a l a s s i s t a n c e , such as f e e d i n g and t o i l e t i n g . The n u r s e s ' o b s e r v a t i o n a l s k i l l s . Nine of the 11 p a r t i c i p a n t s d e s c r i b e d the o b s e r v a t i o n a l s k i l l s of the ADC nurses as being s i g n i f i c a n t i n terms of t h e i r a b i l i t y to know when people r e q u i r e d t h e i r h e l p . Some of the p a r t i c i p a n t s d e s c r i b e d the nurses o b s e r v a t i o n a l s k i l l s as "a g i f t " , "an a b i l i t y to d e t e c t change", and "an a b i l i t y to surmise". One p a r t i c i p a n t e x p l a i n e d t h a t she does not even have to t e l l the nurse when she i s not w e l l , because the nurse j u s t seems to "know". The f o l l o w i n g i s an example of one s i t u a t i o n 54 she d e s c r i b e d : "Oh, yes, I don't even have to ask. [The nurse] watches, and even when you don't say a n y t h i n g , she knows If I'm not f e e l i n g w e l l . Once the a d m i n i s t r a t o r c a l l e d me a t home, and s a i d t h a t one of the nurses had s a i d t h a t I d i d n ' t f e e l w e l l . T h i s was t r u e , but I hadn't even spoken to the nurse. Very i n t e r e s t i n g . She knows e v e r y t h i n g . Another woman d e s c r i b e d how the nurse at her c e n t r e a s s i s t e d c l i e n t s by being a b l e to "surmise" the c l i e n t s ' problems, and p r o v i d i n g an environment conducive to the c o u n s e l l i n g p r o c e s s . She i s very a t t e n t i v e . Anytime you wanted to t a l k to her, she was t h e r e . And there were times she c o u l d surmise t h a t something was b o t h e r i n g you, and then she'd make an excuse that i t was time you had your blood pressure checked. And once she got you away from everybody, you seem to kind of l e t out to her, you know? Another p a r t i c i p a n t had a l s o witnessed the nurses' a b i l i t y to d e t e c t changes In c l i e n t s ' c o n d i t i o n s and emotional s t a t e s . She d e s c r i b e d her o b s e r v a t i o n s i n the f o l l o w i n g way: There's something about [the n u r s e ] . She can d e t e c t , which i s of course what nurses do - a g i f t I t h i n k . I f t h e r e ' s something b o t h e r i n g you - anything - she seems to f i g u r e out what's c a u s i n g i t . She i s p e r c e p t i v e about what's going on. She can t e l l j u s t by your a c t i o n s , and the way a person i s , that something i s not r i g h t . The nurses' knowledge base. E i g h t of the 11 p a r t i c i p a n t s i n d i c a t e d t h a t the nurses' knowledge enabled them to a s s i s t c l i e n t s i n p r o b l e m - s o l v i n g , as w e l l as i n the a c q u i s i t i o n of new knowledge. P a r t i c i p a n t s d e s c r i b e d the nurses as being e f f e c t i v e i n p r o v i d i n g a v a r i e t y of i n f o r m a t i o n p e r t a i n i n g t o d i e t , weight 55 c o n t r o l , medications, and other s p e c i f i c h e a l t h problems. One woman d e s c r i b e d how the nurses a s s i s t e d her i n s o r t i n g out her medication regime: I ' l l t e l l you one t h i n g ; when you get as many drugs as I take, and then you wonder how to take them, and the d o c t o r s don't seem i n t e r e s t e d i n t h a t s o r t of t h i n g . [The nurses] are so up on what you should or shouldn't take with what. They seem v e r y l e a r n e d . [The nurse] says, " B r i n g them a l l i n or b r i n g me a l i s t , and w e ' l l go through them a l l " . So I know what to take. Another woman ex p l a i n e d t h a t the nurse had always been ab l e to provide her with the i n f o r m a t i o n she needed i n s p e c i f i c s i t u a t i o n s . She s a i d , "I f i n d her easy to t a l k t o , and i f I have any problems, she seems to always have the answers. I think she's q u i t e g i f t e d t h a t way." When asked where one might access i n f o r m a t i o n i f there were no nurse a v a i l a b l e at the ADC c e n t r e , one p a r t i c i p a n t responded as f o l l o w s : Well, there i s n ' t anyone e l s e t h a t I would want to seek i n f o r m a t i o n from, because they wouldn't be a b l e to gi v e i t to me. I've had so much good i n f o r m a t i o n from [the n u r s e s ] . I f i n d them so h e l p f u l . And then when I get home, I t a l k to my s i s t e r , and t e l l her. Other p a r t i c i p a n t s i n d i c a t e d t h a t , i f there were no nurse a v a i l a b l e a t the c e n t r e , they would l i k e l y t r y to access help from t h e i r f a m i l y p h y s i c i a n . S i x p a r t i c i p a n t s e x p l a i n e d that they found i t p h y s i c a l l y d i f f i c u l t to get to the do c t o r ' s o f f i c e , and found i t more convenient to have a nurse a v a i l a b l e a t t h e i r c e n t r e . 56 Communication and i n t e r p e r s o n a l s k i l l s . Ten of the 11 p a r t i c i p a n t s i n d i c a t e d t h a t , while the in f o r m a t i o n and help they r e c e i v e d from the nurses was necessary, the nurses' communication and i n t e r p e r s o n a l s k i l l s were seen as being e q u a l l y important. P a r t i c i p a n t s f e l t t h a t the way i n which the nurses communicated appeared to convey t h e i r i n t e r e s t i n each c l i e n t ' s p e r s o n a l s i t u a t i o n , which i n t u r n , seemed to i n c r e a s e the c l i e n t ' s s e l f - e s t e e m and sense of s e c u r i t y . One woman d e s c r i b e d a c o n v e r s a t i o n she had had with the nurse d u r i n g which she was able to d e s c r i b e her own s i t u a t i o n i n d e t a i l . T h i s p a r t i c i p a n t e x p l a i n e d t h a t the nurse's response conveyed s i n c e r e i n t e r e s t , and enabled the p a r t i c i p a n t to f e e l t h a t her problems were " r e a l " , and t h a t the a s s i s t a n c e she needed would be pr o v i d e d . P a r t of her d e s c r i p t i o n was as f o l l o w s : W e l l , [the nurse] got me a cup of c o f f e e , and she came and sat and t a l k e d to me f o r a long time. I e x p l a i n e d to her what was wrong with me, she t o l d me t h a t she would do e v e r y t h i n g she co u l d to help me. I t made me f e e l l i k e she r e a l l y c a r e d " . Another p a r t i c i p a n t e x p l a i n e d t h a t the nurses conveyed i n t e r e s t through keeping t r a c k of attendance, and acknowledging a c l i e n t ' s r e t u r n f o l l o w i n g an absence. She e x p l a i n e d , "Well, i f you've been away s i c k , they come and t a l k to you about how you're f e e l i n g , and they know you've been absent, and they 57 welcome you back. I t ' s j u s t t h at they're I n t e r e s t e d " . Two other p a r t i c i p a n t s i n d i c a t e d t h a t the nurses v i s i t c l i e n t s , both i n t h e i r homes and i n the h o s p i t a l , when they are too i l l to att e n d the program. S i x p a r t i c i p a n t s e x p l a i n e d t h a t the nurses a l s o c a l l e d c l i e n t s a t home when they had been absent from the program. One p a r t i c i p a n t e x p l a i n e d how t h i s s e r v i c e made her f e e l : "They even c a l l you at home when you're s i c k to see how you ar e . I t ' s very n i c e , because you know th a t someone i s t h i n k i n g about you!" Another p a r t i c i p a n t d e s c r i b e d the impact of the nurse c a l l i n g her at home when she was unable to a t t e n d the program. T h i s p a r t i c i p a n t e x p l a i n e d how i t f e l t to know t h a t someone was concerned about her: Well, I had been away f o r 3 Wednesdays, and [the nurse] phoned me. She s a i d "I thought you might l i k e a shoulder to lean on f o r a w h i l e " . We t a l k e d f o r a l i t t l e while - she doesn't t a l k f o r too long, but I f e l t good a f t e r . E i g h t p a r t i c i p a n t s d e s c r i b e d the importance of the nurses being approachable and e x p l a i n e d that t h i s f a c t o r c o n t r i b u t e d to the ease with which they c o u l d t a l k to the nurses. The nurse's approachable nature was a l s o seen as a means of conveying i n t e r e s t , understanding, and sympathy. T h i s was seen as p a r t i c u l a r l y s i g n i f i c a n t when p a r t i c i p a n t s were r e c e i v i n g g r i e f c o u n s e l l i n g . One p a r t i c i p a n t e x p l a i n e d t h a t , "You can t a l k to [the nurses] where you wouldn't t a l k to your neighbour. They were sympathetic and understood what i t was a l l a b o u t . . . i t ' s j u s t t h a t they're I n t e r e s t e d " . Another p a r t i c i p a n t d e s c r i b e d a s i t u a t i o n i n which she had 58 begun to f e e l depressed. She was unsure as to the cause of her de p r e s s i v e mood, and choose to d i s c u s s i t with the nurse. I know I got very depressed before I got s i c k . I d i d n ' t know whether i t was coming around to the a n n i v e r s a r y of my husband's death, and I guess I was j u s t not f e e l i n g w e l l . So I d i s c u s s e d i t with the nurse, and she was, w e l l , she was there to t a l k t o . She understood and she was i n t e r e s t e d , you know? One p a r t i c i p a n t d e s c r i b e d her intense f e e l i n g s of l o n e l i n e s s f o l l o w i n g the death of her spouse, and d e s c r i b e d the empathetic response on the part of the nurses. "They were very good; very compatible. They understood how I f e l t and what I've gone thr o u g h . . . w e l l , they can't know e x a c t l y what i t ' s l i k e , but they t r y to understand how I must f e e l , and that helped me". One woman d e s c r i b e d the d e v a s t a t i o n she f e l t a f t e r l o s i n g a l i f e - l o n g f r i e n d . She d e s c r i b e d her s i t u a t i o n , and e x p l a i n e d how the nurse was able to help her cope with her l o s s . J u s t before Christmas, I l o s t a f r i e n d t h a t I'd had f o r p r a c t i c a l l y 70 y e a r s . And I t o l d [the nurse] about I t of course, and she was very k i n d , and I was g l a d to speak to her... She seemed g e n u i n e l y i n t e r e s t e d i n how I was f e e l i n g . I t helped to have her to t a l k to about i t . One p a r t i c i p a n t d e s c r i b e d how the nurses a t her c e n t r e u t i l i z e d non-verbal behaviors to convey a f f e c t i o n and i n t e r e s t . T h i s woman d e s c r i b e d her experience upon r e t u r n i n g to the program f o l l o w i n g an absence due to i l l n e s s . They're a f f e c t i o n a t e people you know. I'd been away f o r q u i t e a while when I was In the h o s p i t a l , and I came back, and the next t h i n g you know, [the nurse] i s g i v i n g me a hug! I t makes you f e e l good to think you were missed, and t h a t someone was t h i n k i n g about you. Of the 11 p a r t i c i p a n t s , 9 i n d i c a t e d t h a t one very s i g n i f i c a n t a spect of the nurses' communication s k i l l s was t h e i r 59 a b i l i t y to l i s t e n . I t appeared to be very Important to the p a r t i c i p a n t s to have o p p o r t u n i t i e s to express themselves f r e e l y and openly, without time c o n s t r a i n t s . One p a r t i c i p a n t d e s c r i b e d the nurse's l i s t e n i n g s k i l l s as f o l l o w s : "[The nurse} has a q u i e t , s o f t v o i c e , and she l e t s you t a l k , and s h e ' l l answer, but she doesn't do a l l the t a l k i n g . You do the t a l k i n g . Then she answers you". In d e s c r i b i n g the nurse's communication s k i l l s , another p a r t i c i p a n t s a i d , "She's very, very good. She's the type of person t h a t l i s t e n s w e l l . She doesn't say too much, so th a t you can f e e l f r e e to t a l k without her t r y i n g to ad v i s e you u n t i l you're f i n i s h e d . A ve r y c o n s i d e r a t e person." One p a r t i c i p a n t compared the freedom of i n t e r a c t i o n with the nurse a t her c e n t r e with t h a t of her d o c t o r . She e x p l a i n e d t h a t , "(The nurse] g i v e s you time to say what you want to say without, w e l l , i f you want to keep t a l k i n g , s h e ' l l l e t you. I t ' s not l i k e t h a t with the d o c t o r " . Other p a r t i c i p a n t s d e s c r i b e d the nurses' g e n e r a l communication s k i l l s as h e l p f u l In p r o v i d i n g c o u n s e l l i n g . One woman e x p l a i n e d : Anything we wish to d i s c u s s - an y t h i n g t h a t ' s b o t h e r i n g us, we f e e l f r e e to come and speak to her. She's good a t t h a t . I f there i s somebody depressed, she's good at t a l k i n g to them. And she's v e r y good - she wouldn't do i t i n f r o n t of anybody - she j u s t takes them i n the o f f i c e . Two p a r t i c i p a n t s i n d i c a t e d t h a t , although they p e r c e i v e d the nurse as being a v a i l a b l e to t a l k to and c o n s u l t with, they had developed a s p e c i a l r apport with another s t a f f member with whom 60 they d i s c u s s e d t h e i r problems and concerns. Health M o n i t o r i n g S e r v i c e s In a d d i t i o n to p r o v i d i n g c o u n s e l l i n g , emotional and p h y s i c a l support, and emergency ca r e , 10 p a r t i c i p a n t s e x p l a i n e d that one important f u n c t i o n of the nurses at t h e i r c e n t r e was t h a t of p r o v i d i n g h e a l t h m o n i t o r i n g . P a r t i c i p a n t s i n d i c a t e d that the nurses monitored, on a r e g u l a r b a s i s , t h e i r blood p r e s s u r e , p u l s e , weight, medications, treatments, and g e n e r a l h e a l t h s t a t u s . As one c l i e n t e x p l a i n e d , " I f you're having t r o u b l e with your medications, or r e a c t i o n s , or a n y t h i n g l i k e t h a t , or you're j u s t not f e e l i n g good, s h e ' l l check you out". One p a r t i c i p a n t was c o n c u r r e n t l y r e c e i v i n g h o s p i t a l - b a s e d o u t - p a t i e n t care through which h i s h e a l t h s t a t u s was being monitored. He I n d i c a t e d t h a t , although he d i d not r e q u i r e the s e r v i c e s of the nurse for h e a l t h m o n i t o r i n g , other c l i e n t s r e q u i r e d and r e c e i v e d t h i s s e r v i c e . P a r t i c i p a n t s a l s o i n d i c a t e d t h a t the nurses kept complete re c o r d s f o r each c l i e n t . One p a r t i c i p a n t e x p l a i n e d her p e r c e p t i o n of the n e c e s s i t y of t h i s i n the event of an emergency: "[The nurse] has a l l the medications we take on a f i l e c a r d . So i f anything happens, you know, i f you have to be rushed to the h o s p i t a l , she can t e l l the medics what we're t a k i n g " . Another p a r t i c i p a n t e x p l a i n e d how the nurse i n t e r f a c e s with 61 other p r o f e s s i o n a l s , and a s s i s t e d c l i e n t s i n s e c u r i n g appointments. In response to a s k i n g her what she would do i f she had a problem with a s i d e e f f e c t of a medication, t h i s p a r t i c i p a n t d e s c r i b e d the f o l l o w i n g s i t u a t i o n : "That d i d happen once, and I t o l d [the nurse] about i t , and she c a l l e d my d o c t o r , and she t a l k e d to him about i t . Then she arranged an appointment for me to see him". A l l p a r t i c i p a n t s were asked to suggest other s e r v i c e s t h a t the nurse a t t h e i r c e n t r e s c o u l d p r o v i d e . A l l p a r t i c i p a n t s i n d i c a t e d t h a t there was nothing e l s e they c o u l d t h i n k of t h a t might prove u s e f u l to them. T h i s lack of spontaneous suggestions and/or c r i t i c i s m s may have been the r e s u l t of three p o s s i b l e f a c t o r s : F i r s t l y , the p a r t i c i p a n t s may have been s e l e c t e d based on the f a c t t h a t they were a l l c u r r e n t l y content with the s e r v i c e s that were being p r o v i d e d . Secondly, p a r t i c i p a n t s may have been r e l u c t a n t to c r i t i c i s e any elements of the program and i t s s e r v i c e s f o r fear of t h i s a f f e c t i n g t h e i r care or p o s i t i o n i n the c e n t r e . The t h i r d p o s s i b i l i t y i s t h a t the s e r v i c e s o f f e r e d by the ADC programs g e n e r a l l y do meet the needs of the c l i e n t s . Summary In summary, t h i s chapter has served to i d e n t i f y p a r t i c i p a n t s ' p e r c e p t i o n s of t h e i r needs, and the r o l e of both the ADC program, as w e l l as the ADC nurses In h e l p i n g them to 62 meet t h e i r needs. The two g e n e r a l needs commonly i d e n t i f i e d by p a r t i c i p a n t s i n c l u d e d the need to cope with a range of concurrent and/or s u c c e s s i v e l o s s e s , and the need to e s t a b l i s h new support systems. The p a r t i c i p a n t s ' d e s c r i p t i o n s of the wide range of l o s s e s experienced are c o n s i s t e n t with other f i n d i n g s i n the l i t e r a t u r e p e r t a i n i n g to the concept of l o s s . The g r i e f response has been widely noted i n i n d i v i d u a l s e x p e r i e n c i n g v a r i o u s kinds of l o s s e s , and i s not the e x c l u s i v e r e s u l t of the l o s s of a person ( A v e r i l l , 1968; C a r l s o n and B l a c k w e l l , 1978; Dimond, 1981; Parkes and Weiss, 1983). The phenomenon p e r t a i n i n g to concurrent and/or s u c c e s s i v e l o s s e s experienced by the e l d e r l y has been addressed by Dimond (1981) who d e s c r i b e d the m u l t i p l e and c a s c a d i n g l o s s e s experienced by the e l d e r l y as "producing a kind of piecemeal l o s s of s e l f " (p. 466). She p o i n t e d out t h a t i t i s because of t h i s m u l t i tude of l o s s e s , t h at many e l d e r l y i n d i v i d u a l s do not have time to complete the " g r i e f work" a s s o c i a t e d with one l o s s before another l o s s o c c u r s . The p a r t i c i p a n t s ' p e r c e p t i o n s of the importance of d e v e l o p i n g and m a i n t a i n i n g new s o c i a l networks and support systems are c o n s i s t e n t with those of other s t u d i e s p e r t a i n i n g to s o c i a l networks and s o c i a l support. A v a r i e t y of r e s e a r c h endeavors have l e d to f i n d i n g s which support the premise that the s u p p o r t i v e a s p e c t s of s o c i a l networks are thought to be a b u f f e r a g a i n s t s t r e s s (Brandt, 1984; Bruhn and P h i l i p s , 1984; Cobb, 1976; G o t t l i e b , 1983; Malone, 1988). P a r t i c i p a n t s ' 63 d e s c r i p t i o n s and recounts of t h e i r f e a r s , f r u s t r a t i o n s , d e p r e s s i o n s , and disappointments are i n d i c a t i v e of the s t r e s s f u l nature of the l o s s e s they have experienced. There i s growing evidence t h a t i n t i m a t e s o c i a l networks which provide support have the p o t e n t i a l to "provide a major source of a f f e c t i o n and i n s t r u m e n t a l r e l a t i o n s h i p s " (Llamas, P a t t i s o n , and Hurd, 1981) and have been shown to be "important to a person's w e l l - b e i n g through r e l a t i o n s h i p s t h a t lead a person to f e e l esteemed, loved, and needed..." (Dean, 1986). P a r t i c i p a n t s i n d i c a t e d t hat many of t h e i r needs r e l a t i n g to s e l f - e s t e e m , belongingness, and purpose were p e r c e i v e d as being met through access to f r i e n d s and s u p p o r t i v e others at the ADC program. The p a r t i c i p a n t s p e r c e p t i o n s of how ADC a s s i s t e d them to increase t h e i r c o n f i d e n c e , thereby p e r m i t t i n g them to e s t a b l i s h new r e l a t i o n s h i p s and to become more s o c i a l l y a c t i v e are s i m i l a r to the f i n d i n g s of R a f f e r t y (1979). R a f f e r t y (1979) u t i l i z e d measurements p e r t a i n i n g to s o c i a l r e l a t i o n s , s o c i a l a c t i v i t i e s , and s o c i a l I n d i c a t o r s of l i f e s a t i s f a c t i o n , and concluded that the ADC c l i e n t s i n her study experienced a higher p s y c h o s o c i a l q u a l i t y of l i f e than d i d homebound I n d i v i d u a l s who were not a t t e n d i n g ADC. In d e s c r i b i n g the e f f e c t i v e n e s s of the n u r s i n g s e r v i c e s , p a r t i c i p a n t s s e l e c t e d words to d e s c r i b e what they p e r c e i v e d as i n d i v i d u a l c h a r a c t e r i s t i c s s p e c i f i c t o the nurse a t t h e i r c e n t r e . While terms such as n i c e , compatible, and c o n s i d e r a t e 64 may be i n d i v i d u a l c h a r a c t e r i s t i c s of the nurses, other terms, such as sympathetic, s u p p o r t i v e , a t t e n t i v e , and understanding are components of the i n t e r p e r s o n a l , communication, and c o u n s e l l i n g s k i l l s c e n t r a l to the r o l e of the p r o f e s s i o n a l nurse. The p a r t i c i p a n t s ' p e r c e p t i o n s of the importance of the nurses' presence i s congruent with the f i n d i n g s of other s t u d i e s conducted to determine v a r i o u s uses of presence as a t h e r a p e u t i c i n t e r v e n t i o n (Gardner and Wheeler, 1981; M a n s f i e l d , 1973; R i c c i , 1981). These s t u d i e s were p r i m a r i l y founded on the premises that the presence and a v a i l a b i l i t y of the nurse serves to demonstrate c a r i n g , and can be e f f e c t i v e i n a s s i s t i n g c l i e n t s to cope through implied p s y c h o l o g i c a l support. T h i s support serves to d i m i n i s h f e e l i n g s of powerlessness, f e a r , a n x i e t y , i s o l a t i o n and d i s t r e s s . 65 Chapter F i v e Summary, C o n c l u s i o n s , I m p l i c a t i o n s , and Recommendations Summary Data were c o l l e c t e d and analyzed to i d e n t i f y the s e l f -p e r c e i v e d needs of ADC c l i e n t s and t h e i r p e r c e p t i o n s of how the ADC n u r s i n g s e r v i c e s were i n s t r u m e n t a l i n a s s i s t i n g them to meet these needs. Two i n t e r v i e w s were conducted with each of the 11 p a r t i c i p a n t s comprising the sample, u s i n g a s e m i - s t r u c t u r e d i n t e r v i e w guide developed by the r e s e a r c h e r . The f i n d i n g s were presented i n three major s e c t i o n s . The f i r s t s e c t i o n comprised the i n d i v i d u a l needs i d e n t i f i e d by the study p a r t i c i p a n t s , and the second s e c t i o n comprised p e r c e p t i o n s and accounts of how the o v e r a l l ADC program, i n c l u d i n g s t a f f , c l i e n t s , programming, and environment, was i n s t r u m e n t a l i n h e l p i n g p a r t i c i p a n t s to meet t h e i r i n d i v i d u a l needs. The need to i n c l u d e t h i s second s e c t i o n emerged as a r e s u l t of p a r t i c i p a n t s being unable to completely d i v o r c e s p e c i f i c a s p e c t s of the n u r s i n g r o l e from those of the o v e r a l l program. The f i n a l s e c t i o n c o n s i s t e d of d e s c r i p t i o n s and accounts of the way i n which ADC nurses a s s i s t e d c l i e n t s i n meeting t h e i r needs. P a r t i c i p a n t s ' expressed needs. 66 The two g e n e r a l needs expressed by p a r t i c i p a n t s were the need to cope with a wide range of s u c c e s s i v e and/or concurrent l o s s e s , and the need to e s t a b l i s h new f r i e n d s h i p s and support systems. F i v e of the 11 p a r t i c i p a n t s had experienced the l o s s of a spouse and r e c a l l e d the extreme f e e l i n g s of h e l p l e s s n e s s and hopelessness t h a t had accompanied the l o s s . Three p a r t i c i p a n t s r e p o r t e d e x p e r i e n c i n g d i f f i c u l t i e s i n r e g a i n i n g a s u i t a b l e l e v e l of independence f o l l o w i n g the l o s s of t h e i r spouse. Two p a r t i c i p a n t s s p e c i f i c a l l y noted that the death of t h e i r spouse r e s u l t e d i n decreased c o n t a c t with l i f e - l o n g f r i e n d s who were s t i l l with a spouse. A l l 11 p a r t i c i p a n t s d e s c r i b e d a wide v a r i e t y of l o s s e s r e s u l t i n g from i l l n e s s and d i s a b i l i t y , and f r e q u e n t l y noted the way i n which t h e i r l o s s e s took on a concurrent or s e q u e n t i a l nature. P a r t i c i p a n t s d e s c r i b e d the vast d i f f i c u l t i e s of having to cope s i m u l t a n e o u s l y with numerous l o s s e s . These i n c l u d e d l o s s e s p e r t a i n i n g to p h y s i c a l parameters such as energy and endurance, muscle s t r e n g t h , c a p a c i t y f o r a c t i v i t y , c a p a c i t y to perform work-related t a s k s , and the a b i l i t y to ambulate s a f e l y . P a r t i c i p a n t s d e s c r i b e d the emotional impact of t h e i r l o s s e s In terms of f e a r , d e p r e s s i o n , h e l p l e s s n e s s , f r u s t r a t i o n , disappointment, l o n e l i n e s s , and i s o l a t i o n . While p a r t i c i p a n t s expressed t h e i r p e r c e p t i o n s of the importance of s o c i a l c o n t a c t 67 with f r i e n d s , most p a r t i c i p a n t s had s u f f e r e d the l o s s of f r i e n d s due to death, or as a r e s u l t of the i n a b i l i t y to p h y s i c a l l y m aintain c o n t a c t . P h y s i c a l and emotional l i m i t a t i o n s made i t d i f f i c u l t to a c q u i r e or e s t a b l i s h new f r i e n d s h i p s or support systems.. The r o l e of the ADC program in meeting c l i e n t s ' needs. In a d d i t i o n to the s p e c i f i c a s s i s t a n c e provided by the ADC nurses, a l l p a r t i c i p a n t s d e s c r i b e d t h e i r p e r c e p t i o n s of the way i n which the o v e r a l l ADC program had been i n s t r u m e n t a l i n a s s i s t i n g them to meet t h e i r needs. The o p p o r t u n i t y to p a r t i c i p a t e i n s o c i a l o u t i n g s and group a c t i v i t i e s was seen as extremely important to p a r t i c i p a n t s . T h i s served to gi v e them something to look forward t o , as w e l l as p r o v i d i n g them with a break from the monotony of t h e i r home environment. The f a c t t h a t the ADC programs employed s t a f f who were a v a i l a b l e to provide p h y s i c a l a s s i s t a n c e d u r i n g the outings was p e r c e i v e d as important. S p e c i a l events, c e l e b r a t i o n s of h o l i d a y s and b i r t h d a y s , and a v a r i e t y of entertainment was viewed by p a r t i c i p a n t s as fun, s t i m u l a t i n g , and e n j o y a b l e . The o p p o r t u n i t y f o r la u g h t e r was a l s o noted as being of p a r t i c u l a r s i g n i f i c a n c e to some of the p a r t i c i p a n t s . The use of games and a c t i v i t i e s were acknowledged by s e v e r a l p a r t i c i p a n t s as a means of p r o v i d i n g mental e x e r c i s e 68 and s t i m u l a t i o n . The i n d i v i d u a l nature of care provided by a l l s t a f f members was seen as important to p a r t i c i p a n t s i n terms of m o t i v a t i o n , and conveying genuine i n t e r e s t and a c a r i n g a t t i t u d e . A l l p a r t i c i p a n t s i n d i c a t e d t h a t being a p a r t of the ADC program provided them with increased f e e l i n g s of group membership. E i g h t p a r t i c i p a n t s expressed a decrease i n t h e i r f e e l i n g s of l o n e l i n e s s as a r e s u l t of a t t e n d i n g the ADC program. Six p a r t i c i p a n t s d e s c r i b e d t h e i r own " h e l p i n g r o l e " at the program, and i n d i c a t e d that the a b i l i t y to help and be i n v o l v e d served to f o s t e r f e e l i n g s of u s e f u l n e s s and s e l f - r e s p e c t . F i v e p a r t i c i p a n t s d e s c r i b e d how a t t e n d i n g the ADC program had helped them to i n c r e a s e t h e i r c o n f i d e n c e and s e l f - e s t e e m , thus e n a b l i n g them to r e l a t e more e a s i l y to people, and e s t a b l i s h new f r i e n d s h i p s . The o p p o r t u n i t y to be i n the company of peers, and to e s t a b l i s h new f r i e n d s h i p s , was Important to c l i e n t s i n terms of a c c e s s i n g emotional support. Ten p a r t i c i p a n t s commented on the r e a l i z a t i o n t h a t other c l i e n t s a t the program were "worse o f f than they", e i t h e r p h y s i c a l l y or m e n t a l l y , and t h i s seemed to a l l o w them to e i t h e r t e m p o r a r i l y f o r g e t t h e i r own problems, or to cope more e f f e c t i v e l y . P a r t i c i p a n t s noted commonalities between themselves and other c l i e n t s , which appeared to f o s t e r a sense of k i n s h i p and compass i o n . 69 The g o l e of the nurse i n a s s i s t i n g p a r t i c i p a n t s to meet t h e i r needs. P a r t i c i p a n t s i n d i c a t e d t h a t having access to the c o u n s e l l i n g s e r v i c e s , emotional support, and h e a l t h m o n i t o r i n g s e r v i c e s provided by the ADC nurses was i n s t r u m e n t a l i n a s s i s t i n g them to meet t h e i r needs. P a r t i c i p a n t s i n d i c a t e d t h a t they u t i l i z e d the c o u n s e l l i n g s e r v i c e s to a s s i s t them i n c o p i n g with recent and c u r r e n t l o s s e s . F i v e main f a c e t s of the nurses' r o l e were seen as being p a r t i c u l a r l y h e l p f u l i n a c c e s s i n g c o u n s e l l i n g and emotional support. F i r s t , the mere presence of the nurse a t the c e n t r e seemed to i n s t i l l a heightened sense of s a f e t y and s e c u r i t y on the p a r t of study p a r t i c i p a n t s . P a r t i c i p a n t s noted t h a t the nurse was always a v a i l a b l e In the event of a medical emergency, or for the purpose of p r o v i d i n g p h y s i c a l or emotional support when needed. Second, p a r t i c i p a n t s d e s c r i b e d the i n d i v i d u a l nature of the n u r s i n g care as being e s s e n t i a l i n p r o v i d i n g a s s i s t a n c e based on each c l i e n t ' s i n d i v i d u a l needs and a b i l i t i e s . The nurses were d e s c r i b e d as "knowing each c l i e n t w e l l " , and p a r t i c i p a n t s f e l t t h a t i t was t h i s that allowed f o r the p r o v i s i o n of i n d i v i d u a l c a r e . T h i r d , p a r t i c i p a n t s noted that the nurses' o b s e r v a t i o n a l s k i l l s were e s s e n t i a l In p e r m i t t i n g them to d e t e c t and surmise c l i e n t s ' needs. Based on these s k i l l s p a r t i c i p a n t s noted t h a t , i n many cases, the nurses i n i t i a t e d c o n t a c t with c l i e n t s who appeared to need a s s i s t a n c e . The nurses* knowledge was a l s o i d e n t i f i e d as h e l p f u l i n terms of p r o v i d i n g a c c u r a t e and u s e f u l i n f o r m a t i o n to c l i e n t s on a wide v a r i e t y of s u b j e c t s . Information p e r t a i n i n g to weight c o n t r o l , d i e t , and medications were i d e n t i f i e d by p a r t i c i p a n t s as important. F i n a l l y , p a r t i c i p a n t s d e s c r i b e d the communication and i n t e r p e r s o n a l s k i l l s of the nurses as being extremely h e l p f u l i n a s s i s t i n g them to cope with t h e i r d i f f i c u l t i e s , problems, and l o s s e s . P a r t i c i p a n t s i d e n t i f i e d the nurses' v o i c e p a t t e r n s , a t t e n t i v e n e s s , and l i s t e n i n g s k i l l s as important i n conveying genuine i n t e r e s t and concern. I t a l s o appeared important to p a r t i c i p a n t s to have the o p p o r t u n i t y to d i s c u s s t h i n g s openly and f r e e l y , and without time c o n s t r a i n t s . P a r t i c i p a n t s noted s p e c i f i c c h a r a c t e r i s t i c s and/or behaviors of the nurses that were seen to be e f f e c t i v e In conveying i n t e r e s t , concern, and a c a r i n g a t t i t u d e . P a r t i c i p a n t s used words such as approachable, c o n s i d e r a t e , understanding, and s u p p o r t i v e to d e s c r i b e the nurses. The h e a l t h m o n i t o r i n g s e r v i c e s d e s c r i b e d by p a r t i c i p a n t s as being u s e f u l i n c l u d e d the measurement and documentation of blood p r e s s u r e , p u l s e , weight, h e i g h t , m e d i c a t i o n s , treatments, and general h e a l t h s t a t u s . 71 M e t h o d o l o g i c a l Issues Throughout the course of t h i s study, s e v e r a l methodological iss u e s were i d e n t i f i e d that warrant c o n s i d e r a t i o n . These i n c l u d e (a) the data c o l l e c t i o n instrument, (b) the u t i l i t y of the follow-up i n t e r v i e w with each p a r t i c i p a n t , (c) length and format of i n t e r v i e w s , and (d) d i f f i c u l t i e s i n s e c u r i n g i n t e r v i e w appointments with p a r t i c i p a n t s . The data c o l l e c t i o n instrument. The use of an open-ended, f l e x i b l e i n t e r v i e w guide was u s e f u l i n determining p a r t i c i p a n t ' s p e r c e p t i o n s of t h e i r needs in r e l a t i o n to the ADC e x p e r i e n c e . T h i s d e s i g n allowed p a r t i c i p a n t s to express f e e l i n g s , p e r c e p t i o n s , and p e r s o n a l accounts to the extent and depth with which they f e l t c o m f o r t a b l e . The r e s e a r c h e r was thus able to determine, a t l e a s t In p a r t , which i s s u e s and areas were most s i g n i f i c a n t f o r p a r t i c i p a n t s . The use of a follow-up i n t e r v i e w . The o r i g i n a l purpose of u s i n g the second Interview was to a l l o w the r e s e a r c h e r the o p p o r t u n i t y to v a l i d a t e and c o n f i r m i n f o r m a t i o n c o l l e c t e d d u r i n g the f i r s t Interview. In terms of meeting the o b j e c t i v e s of the study, the second 72 i n t e r v i e w was not found to be p a r t i c u l a r l y u s e f u l . P a r t i c i p a n t s c l e a r l y a r t i c u l a t e d t h e i r p e r c e p t i o n s and f e e l i n g s d u r i n g the f i r s t i n t e r v i e w , and no s i g n i f i c a n t m i s p e r c e p t i o n s or m i s i n t e r p r e t a t i o n s were i d e n t i f i e d d u r i n g the subsequent i n t e r v i e w . However, i n terms of b e n e f i t s to the p a r t i c i p a n t s , i t appeared that having the o p p o r t u n i t y f o r a second meeting permitted i n c r e a s e d f e e l i n g s of involvement on the p a r t of p a r t i c i p a n t s . The second i n t e r v i e w a l s o seemed to in c r e a s e the p a r t i c i p a n t s ' l e v e l of comfort i n terms of c o n f i d i n g i n the r e s e a r c h e r . Although very l i t t l e new data was c o l l e c t e d d u r i n g the second i n t e r v i e w s , p a r t i c i p a n t s seemed more comfortable i n r e c o u n t i n g f e e l i n g s and experiences i n g r e a t e r d e t a i l , and on a more in t i m a t e l e v e l . These more i n t i m a t e and d e t a i l e d accounts were u s e f u l i n terms of a l l o w i n g the r e s e a r c h e r to s e l e c t q u o t a t i o n s t h a t i l l u s t r a t e d more comprehensively and p a s s i o n a t e l y , the f i n d i n g s of the study. The l e n g t h and format of Int e r v i e w s . I t was noted t h a t , d u r i n g the f i r s t i n t e r v i e w s , p a r t i c i p a n t s had a need t o d e s c r i b e i n d e t a i l t h e i r p r e v i o u s medical h i s t o r i e s and c u r r e n t h e a l t h s t a t u s . Because p a r t i c i p a n t s were asked t o share t h e i r p e r c e p t i o n s of n u r s i n g care needs, and these needs were f r e q u e n t l y a s s o c i a t e d with, or the d i r e c t r e s u l t of medical and/or h e a l t h problems, t h i s f i n d i n g was not 73 s u r p r i s i n g . Since a l l p a r t i c i p a n t s C e l t the need to share t h i s i n f o r m a t i o n with the i n t e r v i e w e r , i t would be u s e f u l to accommodate t h i s need when c o n s i d e r i n g formats f o r f u t u r e s t u d i e s . D i f f i c u l t i e s i n s e c u r i n g i n t e r v i e w appointments. There were some d i f f i c u l t i e s encountered i n t r y i n g to secure the i n i t i a l i n t e r v i e w appointments with some of the study p a r t i c i p a n t s . The number of telephone c a l l s made to each p a r t i c i p a n t to secure an appointment f o r i n i t i a l i n t e r v i e w s ranged from 1 to 3 c a l l s . S i x of the 11 p a r t i c i p a n t s r e p o r t e d having i l l n e s s e s such as " c o l d s " or " f l u " , and one had been h o s p i t a l i z e d due to pneumonia. These i l l n e s s e s , n e c e s s i t a t e d d e l a y i n g i n t e r v i e w s with f i v e p a r t i c i p a n t s , with the len g t h of de l a y s ranging from 1 to 3 weeks. In making appointments f o r the follow-up i n t e r v i e w s , there were no r e p o r t e d i l l n e s s e s , and o n l y one telephone c a l l was made to each p a r t i c i p a n t to e s t a b l i s h follow-up i n t e r v i e w appointments. I t was a l s o noted t h a t , i n a l l o w i n g p a r t i c i p a n t s to s e l e c t the days of the week t h a t best s u i t e d t h e i r schedules, the m a j o r i t y (n = 7) requested that the Interviews take place d u r i n g the weekend. These p a r t i c i p a n t s e x p l a i n e d t h a t they found the weekends to be "lon g " s i n c e t h e i r homemakers tended to come d u r i n g the week, and the ADC programs' days of o p e r a t i o n are Monday through F r i d a y . 74 The occurrence of v a r i o u s i l l n e s s e s experienced by the p a r t i c i p a n t s i s not s u r p r i s i n g c o n s i d e r i n g t h a t the purpose of ADC programs i s to serve those members of the e l d e r l y p o p u l a t i o n who are c o n s i d e r e d to be f r a i l (Padula, 1983). The f r a i l t y of ADC c l i e n t s , and the accompanying v u l n e r a b i l i t y to i l l n e s s e s , should be taken i n t o c o n s i d e r a t i o n i n e s t a b l i s h i n g time-frames and d e a d l i n e s f o r r e s e a r c h p r o j e c t s . C o n c l u s i o n s P a r t i c i p a n t s ' needs. A s i g n i f i c a n t need expressed by p a r t i c i p a n t s was the need to cope with, and a d j u s t to the occurrence of numerous concurrent and/or s u c c e s s i v e l o s s e s . G r i e f and bereavement c o u n s e l l i n g appeared to be extremely Important i n a s s i s t i n g c l i e n t s to cope with the many l o s s e s they experienced. Losses noted by p a r t i c i p a n t s Included not o n l y the l o s s of spouse or s i g n i f i c a n t o t h e r s , but a l s o those p e r t a i n i n g to p h y s i c a l f u n c t i o n i n g , endurance, s e l f - c a r e a b i l i t i e s , s e l f - e s t e e m , and emotional s t a b i l i t y . Regular access to q u a l i t y c o u n s e l l i n g s e r v i c e s appeared to a s s i s t the p a r t i c i p a n t s In completing t h e i r " g r i e f work" while h e l p i n g them t o a d j u s t and cope with the v a s t changes brought about by t h e i r l o s s e s . 75 The r o l e of the ADC program. The f i n d i n g s of t h i s study i n d i c a t e t h a t the o p p o r t u n i t y to s o c i a l i z e , e s t a b l i s h f r i e n d s h i p s , a c q u i r e access to s u p p o r t i v e r e l a t i o n s h i p s , and to e s t a b l i s h a sense of group membership a l l have a s i g n i f i c a n t impact on the p a r t i c i p a n t s . These o p p o r t u n i t i e s were shown to have a p o s i t i v e i n f l u e n c e on p a r t i c i p a n t s ' f e e l i n g s of l o n e l i n e s s , i s o l a t i o n , s e l f - e s t e e m , and the g e n e r a l a b i l i t y to adapt t o , and cope with a v a r i e t y of l o s s e s and changes. The r o l e of the nurse. The r o l e of the ADC nurses was g e n e r a l l y d e s c r i b e d as c o n s i s t i n g of the p r o v i s i o n of p h y s i c a l and emotional support through c o u n s e l l i n g , and a v a r i e t y of h e a l t h m o nitoring s e r v i c e s . P a r t i c i p a n t s ' d e s c r i p t i o n s of the e f f e c t i v e n e s s of the nurses' c o u n s e l l i n g and s u p p o r t i v e r o l e s were seen as being based on the nurses' presence, o b s e r v a t i o n a l s k i l l s , knowledge base, i n d i v i d u a l i z a t i o n of c a r e , and communication and i n t e r p e r s o n a l s k i l l s . The mere presence of the ADC nurse was of s i g n i f i c a n c e to a l l p a r t i c i p a n t s i n terms of i n c r e a s i n g t h e i r f e e l i n g s of s a f e t y and s e c u r i t y . The knowledge base, o b s e r v a t i o n a l s k i l l s , as w e l l as the other communication s k i l l s noted by p a r t i c i p a n t s are a l l 76 I n t e g r a l components of the p r o f e s s i o n a l n u r s i n g r o l e . P a r t i c i p a n t s d e s c r i b e d a v a r i e t y of n u r s i n g approaches, techniques and s t r a t e g i e s , which were seen as h e l p f u l i n a s s i s t i n g p a r t i c i p a n t s to meet t h e i r d i v e r s e and i n d i v i d u a l needs. These f i n d i n g s are congruent with the unique f u n c t i o n of n u r s i n g as d e p i c t e d i n the UBC Model f o r Nursing (Campbell, 1987). According to t h i s model, nursing's unique f u n c t i o n i s to "nurture i n d i v i d u a l s e x p e r i e n c i n g c r i t i c a l p e r i o d s i n the l i f e c y c l e so that they may develop and u t i l i z e a range of coping behaviors that permit them to s a t i s f y t h e i r b a s i c human needs, to achieve s t a b i l i t y , and to reach optimal h e a l t h " (p. 37). I m p l i c a t i o n s Although' the s m a l l sample s i z e used f o r t h i s study presents l i m i t a t i o n s i n terms of g e n e r a l i z a t i o n , the f i n d i n g s d i d serve to i d e n t i f y p a r t i c i p a n t s ' p e r c e p t i o n s of needs, and the way i n which both the ADC nurses, and the ADC program i n g e n e r a l , were h e l p f u l In a s s i s t i n g them to meet t h e i r needs. F i n d i n g s of the study suggest s e v e r a l i m p l i c a t i o n s f o r n u r s i n g r e s e a r c h , e d u c a t i o n , and p r a c t i c e . Mucginq r e s e a r c h , Based on the f i n d i n g s of t h i s study, the f o l l o w i n g are suggestions f o r f u r t h e r r e s e a r c h : 77 1. Interview ADC nurses to g a i n t h e i r p e r c e p t i o n s of the needs of ADC c l i e n t s . 2. A l a r g e sample, l o n g i t u d i n a l study i n t e r v i e w i n g ADC c l i e n t s a t s i x months, one year, and two years f o l l o w i n g commencement at ADC. T h i s would a l l o w f o r the d e t e r m i n a t i o n of the process of adjustment and coping with regard to p e r c e i v e d l o s s e s . 3. A sample of ADC c l i e n t s matched with e l d e r l y persons e l i g i b l e f o r , but not a t t e n d i n g ADC would a l l o w f o r the d e t e r m i n a t i o n of d i f f e r e n c e s between the two groups i n terms of t h e i r means of a c c e s s i n g v a r i o u s types of support. 4. Interview other h e a l t h care p r o f e s s i o n a l s i n v o l v e d i n community care of the e l d e r l y to determine t h e i r p e r c e p t i o n s of the ADC nurses' r o l e . Nursing e d u c a t i o n . The f i n d i n g s of t h i s study c l e a r l y p o i n t to the n e c e s s i t y of ADC nurses being prepared i n such as way as to ensure the p o s s e s s i o n of the r e q u i r e d l e v e l of s k i l l , knowledge, and e x p e r t i s e deemed e s s e n t i a l by the ADC c l i e n t s . E x c e l l e n t c o u n s e l l i n g and i n t e r p e r s o n a l s k i l l s were found to be of paramount s i g n i f i c a n c e . The f i n d i n g s of t h i s study p e r t a i n i n g to p a r t i c i p a n t s ' needs, and t h e i r p e r c e p t i o n s of the nurse's r o l e i n ADC, have i m p l i c a t i o n s f o r n u r s i n g e d u c a t i o n , and support the p o s i t i o n 78 taken by the Canadian Nurses' A s s o c i a t i o n (t CNA], 1982) that "by the year 2000, the minimum e d u c a t i o n a l requirement f o r e n t r y i n t o the p r a c t i c e of n u r s i n g should be s u c c e s s f u l completion of a b a c c a l a u r e a t e degree i n n u r s i n g " . The CNA adopted t h i s p o s i t i o n f o l l o w i n g an examination and a n a l y s i s of trends and changes over time i n s o c i e t y , h e a l t h c a r e , and n u r s i n g p r a c t i c e . The d e c i s i o n to adopt the b a c c a l a u r e a t e degree requirement was based on the b e l i e f t h a t nurses w i l l r e q u i r e a b a s i c e d u c a t i o n a l program t h a t p r o v i d e s the breadth and depth of p r e p a r a t i o n necessary f o r meeting the changing h e a l t h care needs of Canadians. C o i n c i d i n g with an i n c r e a s e i n the number of e l d e r l y i n the communities, i s an i n c r e a s e i n the prevalence of h e a l t h problems r e l a t e d to l i f e s t y l e d i s e a s e s , c h r o n i c d i s e a s e s , and d i s a b i l i t i e s . There i s a growing emphasis on the need f o r community based n u r s i n g s e r v i c e s , and to keep pace with these changes, nurses w i l l need to be prepared to assume more c h a l l e n g i n g r o l e s with i n c r e a s e d r e s p o n s i b i l i t i e s . Nurses w i l l have to f u n c t i o n i n the r o l e s of c a r e - g i v e r , teacher, c o u n s e l l o r , and p a t i e n t advocate, and c l i n i c a l d e c i s i o n s w i l l be i n c r e a s i n g l y autonomous and complex. To ensure adequate p r e p a r a t i o n , e d u c a t i o n a l programs are r e q u i r e d which provide in-depth knowledge, and a n a l y t i c , psychomotor, communication, c o u n s e l l i n g , and i n t e r p e r s o n a l s k i l l s . " E d u c a t i o n a l p r e p a r a t i o n of t h i s nature Is f a c i l i t a t e d by the resources and l e a r n i n g experiences provided i n a u n i v e r s i t y s e t t i n g (CNA, 1987). 79 Furth e r s u p p o r t i n g the b a c c a l a u r e a t e degree requirement Is the importance of ADC nurses r e c e i v i n g a more e x t e n s i v e e d u c a t i o n which focuses on the areas of community n u r s i n g and, more s p e c i f i c a l l y , on gerontology. The needs expressed by p a r t i c i p a n t s i n t h i s study c l e a r l y support Lalonde's (1974) p o s i t i o n of the need to s h i f t the focus from h o s p i t a l - b a s e d and i l l n e s s - c e n t r e d care to that of community care encompassing h e a l t h promotion, d i s e a s e p r e v e n t i o n and h e a l t h maintenance. Many of the needs, problems, and d i f f i c u l t i e s encountered by the p a r t i c i p a n t s of t h i s study were ones t h a t are f r e q u e n t l y encountered by the e l d e r l y . While a l l i n d i v i d u a l s experience l o s s e s , the o l d e r p o p u l a t i o n seem to be p a r t i c u l a r l y v u l n e r a b l e to the occurrence of numerous l o s s e s that are experienced both c o n c u r r e n t l y and s u c c e s s i v e l y . L o g i s t i c a l l y , t h i s occurrence i s more p r e v a l e n t i n the e l d e r l y p o p u l a t i o n , as a r e s u l t of the onset of c h r o n i c d i s e a s e , d i s a b i l i t y , and frequent l o s s e s of f r i e n d s and s i g n i f i c a n t o t h e r s . P r o v i d i n g nurses with l e a r n i n g o p p o r t u n i t i e s s p e c i f i c to geron t o l o g y i s e s s e n t i a l i n the p r o v i s i o n of s e n s i t i v e and comprehensive n u r s i n g c a r e . N u r s i n g p r a c t i c e , The f i n d i n g s of t h i s study suggest a s i g n i f i c a n t c o u n s e l l i n g r o l e f o r ADC nurses. F a c t o r s such as the nurses' l e v e l of knowledge, o b s e r v a t i o n a l s k i l l s , i n t e r p e r s o n a l s k i l l s , and a v a i l a b i l i t y were seen as f a c t o r s c o n t r i b u t i n g to the 80 e f f e c t i v e n e s s of the c o u n s e l l i n g process. The f a c t t h a t the nurses possessed the p r o f e s s i o n a l c a p a b i l i t e s to a d m i n i s t e r a wide range of care was seen as important i n a s s i s t i n g c l i e n t s to meet t h e i r wide range of needs. A sound knowledge of the e f f e c t s of acute and c h r o n i c i l l n e s s e s and d i s a b i l i t i e s , assessment s k i l l s , c o u n s e l l i n g s k i l l s , medication management, and emergency treatment, i n a d d i t i o n to a wide range of i n t e r v e n t i o n s t r a t e g i e s are necessary i n p r o v i d i n g the kind of h o l i s t i c care seen as important by ADC c l i e n t s . For t h i s reason, i t appears t h a t the r o l e of the p r o f e s s i o n a l nurse i s c e n t r a l to the p r o v i s i o n of comprehensive and thorough care to ADC c l i e n t s . Based on the f i n d i n g s , there a l s o appears to be a c e n t r a l importance att a c h e d to the nurses' a b i l i t i e s to provide c l i e n t s with s u f f i c i e n t time i n terms of i n d i v i d u a l i n t e r a c t i o n and c a r e . In response to the i n c r e a s i n g numbers of e l d e r l y , I t i s c o n c e i v a b l e that both the number and s i z e of ADC programs w i l l need to expand to accommodate t h i s demographic t r e n d . P r e s e n t l y , many of the ADC nurses are employed on a part-time b a s i s . I t appears to be of g r e a t importance t h a t the hours of work f o r the ADC nurses, as w e l l as t h e i r c l i e n t c a s e - l o a d s are a d j u s t e d as necessary to accommodate and f a c i l i t a t e t h e i r r o l e . Re ferences A r l i n g , G., Harkins, E. B. & Romaniuk, M. (1984). Adult day care and the nu r s i n g home: The a p p r o p r i a t e n e s s of care i n a l t e r n a t i v e s e t t i n g s . Research on Aging, 6(2), 225-242. A v e r i l l , J . R. (1968). G r i e f : I t s nature and s i g n i f i c a n c e . P s y c h o l o g i c a l B u l l e t i n , 70.(6), 721-743. Brandt, P. A. (1984). S t r e s s b u f f e r i n g e f f e c t s of s o c i a l support on maternal d i s c i p l i n e . Nursing Research. 33, 229-234. Brink, P. J . & Wood, M. J . (1983) B a s i c steps i n p l a n n i n g n u r s i n g r e s e a r c h : From q u e s t i o n to p r o p o s a l . (2nd. ed.), Monteray: C a l i f o r n i a , Wadsworth Health Sciences D i v i s i o n . Bruhn, J . G. & P h i l i p s , B. U. (1984). Measuring s o c i a l support: A s y n t h e s i s of c u r r e n t approaches. J o u r n a l of B e h a v i o r a l Medicine. 7,, 151-169. B u t l e r , R.N. & Lewis, M.I. (1982). Aging and mental h e a l t h : P o s i t i v e p s y c h o s o c i a l and biome d i c a l approaches. (3rd. ed. ), S t . L o u i s : The C.V. Mosby Company. Campbell, M. A. (1987). The UBC Model f o r Nursing: D i r e c t i o n s f o r P r a c t i c e . Vancouver: U n i v e r s i t y of B r i t i s h Columbia, School of Nursing. Canadian Medical A s s o c i a t i o n . (1987). Health care f o r the e l d e r l v : Today's c h a l l e n g e s , tomorrow's o p t i o n s . Ottawa: Author. Canadian Nurses' A s s o c i a t i o n . (1982). E n t r y to P r a c t i c e of Nursing; A Background Paper. Ottawa, O n t a r i o : Author. Canadian Nurses' A s s o c i a t i o n . (1987, A p r i l ) E n t r y to P r a c t i c e Newsletter. (Fact Sheet 6 ) . Ottawa, O n t a r i o : Author. C a r l s o n , C. E. & B l a c k w e l l , B. (1978). B e h a v i o r a l concepts and n u r s i n g i n t e r v e n t i o n . (2nd. e d . ) . P h i l a d e l p h i a : J . B. L l p p i n c o t t Co. 82 Carson, D. H. (1970). N a t u r a l landscape as meaningful space f o r the aged. In L. A. P a s t a l a n & D. H. Carson (Eds.), S p a c i a l behavior of ol d e r people (pp. 194-210). Ann Arbor: U n i v e r s i t y of Michigan. Chang, B. L., Uman, G. C , L i n n , L. S., Ware, J . E., & Kane, R. L. (1984). The e f f e c t of s y s t e m a t i c a l l y v a r y i n g components of n u r s i n g care i n s a t i s f a c t i o n i n e l d e r l y ambulatory women. The Western J o u r n a l of Nursing Research. 6,(4), 367-373. C h a p p e l l , N. L. (1983). Who b e n e f i t s from a d u l t day c a r e : Changes i n f u n c t i o n a l a b i l i t y and mental f u n c t i o n i n g d u r i n g attendance. Canadian J o u r n a l on Aging. 2(1), 9-26. C l u f f , A. W. & C l u f f , P. J . (and A s s o c i a t e d P l a n n i n g C o n s u l t a n t s I n c . ) . 1981. Needs of the e l d e r l y . ( P r o j e c t : 80101). Ottawa: Health and Welfare Canada: Health F a c i l i t i e s Design D i v i s i o n ; Health S e r v i c e s and Promotion Branch. Cobb, S. (1976). S o c i a l support as a moderator of s t r e s s . Psychosomatic Medicine. 3_8_(5), 300-314. Dean, P. G. (1986). Expanding our s i g h t s to i n c l u d e s o c i a l networks. Nursing and Health Care. 7(10), 545-550. Dimond, M. (1981). Bereavement and the e l d e r l y : A c r i t i c a l review with i m p l i c a t i o n s f o r nur s i n g p r a c t i c e and r e s e a r c h . J o u r n a l of Advanced Nursing. 6_, 461-469 . E i s d o r f e r , C. & Cohen, D. (1982). Mental h e a l t h care of the a g i n g ; A m u l t l d l s c l o l l n a r v c u r r i c u l u m f o r p r o f e s s i o n a l t r a i n i n g . New York: Springer P u b l i s h i n g Company. Ferguson, G. (1987). How to 'achieve h e a l t h f o r a l l ' by the year 2000. Health Care r 29 r 14. Forgan Morle, K. M. (1984). P a t i e n t s a t i s f a c t i o n : Care of the e l d e r l y . J o u r n a l °f Advanced N u r s i n g , !/ 71-76. Gaertner, S. L., S t e r l i n g , B. S., & Markisohn, G. (1981). Adult day care - a v i a b l e a l t e r n a t i v e : A comparison of a d u l t day care p a r t i c i p a n t s and n u r s i n g -home r e s i d e n t s . I n t e r n a t i o n a l J o u r n a l of P a r t i a l H o s p i t a l i z a t i o n , l ( 2 ) r 151-157. 83 G a l l a g h e r , E. M. (1985). C a p i t a l i z e on e l d e r s t r e n g t h s . J o u r n a l of G e r o n t o l o g i c a l Nursing, 11., ( 6 ), 13-16. Gamotis, P.B., Dearmon, V.C., D o o l i t t l e , N. 0. & P r i c e , S. C. (1988). I n p a t i e n t vs o u t p a t i e n t s a t i s f a c t i o n : A r e s e a r c h study. A s s o c i a t i o n of Operating Room Nurses 1 1 , ( 6 ) , 1421-2, 1424-5. Gardner, K. & Wheeler, E. C. (1981). Nurses' p e r c e p t i o n s of the meaning of support i n n u r s i n g . Issues i n Mental Health Nursing. 3, 13-28. G o t t l i e b , B. H. (1983). S o c i a l support s t r a t e g i e s : G u i d e l i n e s f o r mental h e a l t h p r a c t i c e . C a l i f o r n i a : SAGE P u b l i c a t i o n s . J a r r e l l , A. (1989, May). Adu l t day care i n B r i t i s h Columbia. Report prepared f o r the Home Support A s s o c i a t i o n of B.C. Unpublished r e p o r t . Lalonde, M. (1974). A new p e r s p e c t i v e on the h e a l t h of Canadians, A Working Document. Ottawa: N a t i o n a l Health and Welfare. La Monica, E. L. (1986). Development of a p a t i e n t s a t i s f a c t i o n s c a l e . Research i n Nursing and Hea l t h . 9, 43-50. L l f t o n , G. (1989). The f u t u r e f o r home support and what boards and management can do to prepare. Vancouver: The Home Support A s s o c i a t i o n of B. C. Llamas, R., P a t t i s o n , E. M., & Hurd, G. (1981). S o c i a l networks: A l i n k between p s y c h i a t r i c epidemiology and community mental h e a l t h . I n t e r n a t i o n a l J o u r n a l of FamUy Therapy, 1(3), 180-193. Lopata, H. Z. (1973). Widowhood i n an American c i t y . Massachusetts: Schenkman P u b l i s h i n g Company. Malone, J . (1988). The s o c i a l support s o c i a l d i s s u p p o r t continuum. J o u r n a l of P s y c h o s o c i a l Nursing and Mental Health S e r v i c e s . 26.(12), 18-22. M a n s f i e l d , E. (1973). Concept and i d e n t i f i e d p s y c h i a t r i c n u r s i n g b e h a v i o r . Nursing Research. 22, 525-530. Melanson, P. M. & Meagher, D. (1986). Out of the jungle and Into the zoo: L i v i n g i n a long-term care i n s t i t u t i o n . G erontion, M a r c h / A p r i l , 26-30. 84 The N a t i o n a l A d v i s o r y C o u n c i l on Aging. (1986). Toward a community support p o l i c y f o r Canadians. ( d i s c u s s i o n paper), Ottawa: Author. The N a t i o n a l A d v i s o r y C o u n c i l On Aging, (1981). The p u b l i c view of a g i n g : P r i o r i t i e s f o r a c t i o n , (October), 23-24 Washington, D.C.: Author. Ory, M. G. (1984), Health promotion s t r a t e g i e s for the aged. J o u r n a l of G e r o n t o l o g i c a l Nursing, 10.(10), 31-35. Padula, H. (1983). Developing a d u l t day c a r e : An approach f o r m a i n t a i n i n g independence f o r Impaired o l d e r persons. Washington, D.C.: The N a t i o n a l C o u n c i l on Aging. Parkes, C. M. & Weiss, R. S. (1983). Recovery from bereavement. New York: B a s i c Books, Inc. P e n s i e r o , M. & Adams, M. (1987). Dress and s e l f - e s t e e m . J o u r n a l of G e r o n t o l o g i c a l Nursing, 13., (10). 11 - 17. R a f f e r t y , L. J . (1979). Adult day c a r e : I t s e f f e c t upon the p s y c h o s o c i a l q u a l i t y of l i f e of otherwise-homebound o l d e r persons i n an urban s e t t i n g . Long Term Care and Health S e r v i c e s A d m i n i s t r a t i o n . 3.(3), 221-229. The Regional M u n i c i p a l i t y of Niagara Senior C i t i z e n s ' Department (1977). A study of day care for s e n i o r c i t i z e n s . Welland, O n t a r i o : Author. R i c c i , M. S. (1981). An experiment with p e r s o n a l space i n v a s i o n i n the n u r s e - p a t i e n t r e l a t i o n s h i p and i t s e f f e c t on a n x i e t y . Issues i n Mental Health Nursing. 3*. 203-218 . Roos, N. P., Shapiro, E., & Roos, L.L. (1984). Aging and the demand f o r Health S e r v i c e s : Which aged and whose demand? The G e r o n t o l o g i s t . 2 1 , ( 1 ) , 31-36. Rosenkoetter, M. M. (1985). Is your c l i e n t ready f o r a r o l e change a f t e r r e t i r e m e n t ? J o u r n a l of G e r o n t o l o g i c a l Nursing, 1 1 , ( 9 ) , 21-24. S e n i o r s ' Resources and Research S o c i e t y of B.C. (1988). P r o f i l e of s e n i o r s In B r i t i s h Columbia. S e n l o r 3 ' Resources. 1 ( 1 ) , 3-6. 85 S t a r r e t t , R. A. (1986). Home h e a l t h c a r e : The e l d e r l y ' s p e r c e p t i o n . Home Health Care S e r v i c e s Q u a r t e r l y , 1 , ( 1 ) , 69-80. Stephens, J . (1975). S o c i e t y of the alone: Freedom, p r i v a c y , and u t i l i t a r i a n i s m as dominant norms i n the SRO. J o u r n a l of Gerontology, 30, 230-235. Ullmer, J . , Abrahams, L. & Brown, D. (1982). A d u l t day care c l i e n t s : a d i s t i n c t p o p u l a t i o n . J o u r n a l of G e r o n t o l o g i c a l S o c i a l Work, 4,( 3/4), 153-166. Wallace, J . (1987). F a c t o r s a f f e c t i n g attendance i n a d u l t day care c e n t r e s . J o u r n a l of G e r o n t o l o g i c a l S o c i a l Work. 11,(3/4), 155-165. Weiler, P. G. & Rathbone-McCuan, E. (1978). Adult day car e : Community work with the e l d e r l y . New York: Springer P u b l i s h i n g Company. Weiner, M. B., Brok, A. J . , & Snadowsky, A. M. (1978). Working with the aged. New J e r s e y : P r e n t i c e - H a l l . 86 APPENDIX I Information L e t t e r to P a r t i c i p a n t s Leah Shapera, who i s a r e g i s t e r e d nurse and student i n the Masters Program at U.B.C. School of Nursing, i s conducting a study. The purpose of the study Is to examine the ways i n which Adult Day Care n u r s i n g s e r v i c e s can a s s i s t e l d e r l y c l i e n t s i n meeting t h e i r n u r s i n g care needs . If you agree to p a r t i c i p a t e i n t h i s study, convenient times f o r 2 i n t e r v i e w s w i l l be arranged. During the f i r s t i n t e r v i e w , you w i l l be asked q u e s t i o n s about your h e a l t h care needs and your involvement with the n u r s i n g s e r v i c e s a t the Adult Day Care cen t e r you are a t t e n d i n g . A second Interview w i l l be done to c l a r i f y and co n f i r m c e r t a i n i n f o r m a t i o n . The f i r s t i n t e r v i e w w i l l be approximately one hour i n len g t h , and the second Interview w i l l take approximately 15 to 20 minutes. Both i n t e r v i e w s w i l l be tape recorded so t h a t your responses and concerns can be c a r e f u l l y c o n s i d e r e d . The onl y people who might l i s t e n to the tape w i l l be the r e s e a r c h e r and her t h e s i s a d v i s o r s . At any p o i n t i n the i n t e r v i e w s , you may r e f u s e to answer qu e s t i o n s or request t h a t the tape be turned o f f . You may a l s o request t h a t c e r t a i n p a r t s of the tape be 87 erased. Information from the taped i n t e r v i e w s w i l l appear i n the w r i t t e n r e p o r t of t h i s study, but your name w i l l not be d i s c l o s e d and the tape w i l l be erased as soon as i t i s t r a n s c r i b e d . You have the r i g h t to r e f u s e to p a r t i c i p a t e or withdraw from t h i s study at any time. Your d e c i s i o n r e g a r d i n g p a r t i c i p a t i o n i n t h i s study w i l l i n no way a f f e c t your present or f u t u r e medical or n u r s i n g c a r e , or p o s i t i o n i n the Adult Day Care. If you are w i l l i n g to p a r t i c i p a t e i n t h i s study, please advise the nurse a t your A d u l t Day Care c e n t e r . She w i l l a d v i s e Leah Shapera to meet with you at your Adult Day Care Center to answer a d d i t i o n a l q u e s t i o n s , o b t a i n a signed consent form, and set up a convenient i n t e r v i e w time. Thank you very much f o r your i n t e r e s t i n t h i s study. 88 APPENDIX II Consent Form f o r Research Study Meeting the Nursing Care Needs of the E l d e r l y In the Community: C l i e n t s ' P e r s p e c t i v e s on Adult Day Care I agree to take p a r t i n a study which w i l l e x p l o r e the n u r s i n g care needs of Adult Day Care c l i e n t s i n r e l a t i o n to the n u r s i n g s e r v i c e s provided by Adult Day Care. The nature, demands and b e n e f i t s of t h i s study have been e x p l a i n e d to me by Leah Shapera and by an i n f o r m a t i o n l e t t e r . I understand that I may ask q u e s t i o n s , and t h a t I am f r e e to withdraw from the study at any time. I understand t h a t a d e c i s i o n to withdraw from the study w i l l i n no way a f f e c t my f u t u r e medical or n u r s i n g c a r e , or my p o s i t i o n i n the A d u l t Day Care. I agree to g i v e Leah Shapera p e r m i s s i o n to conduct two i n t e r v i e w s with me i n my home. I understand that the i n t e r v i e w s w i l l be tape re c o r d e d , and the tapes w i l l be erased completely once the study i s completed. I a l s o g i v e Leah Shapera p e r m i s s i o n to o b t a i n i n f o r m a t i o n from the Adult Day Care nurse r e g a r d i n g my c u r r e n t Care L e v e l . I have r e c e i v e d a copy of the i n f o r m a t i o n l e t t e r and the consent form. Subject's s i g n a t u r e Date Witness's s i g n a t u r e . Date [Leah Shapera can be reached at APPENDIX III Agency Consent Form I, ( A d m i n i s t r a t o r ' s name) a d m i n i s t r a t o r of (Name of Adult Day Care) give Leah Shapera permission to conduct her study e n t i t l e d "Meeting the Needs of the E l d e r l y i n the Community: C l i e n t s ' P e r s p e c t i v e s on Adult Day Care". Leah Shapera has provided me with i n f o r m a t i o n p e r t a i n i n g to the nature and purpose of her study, and has e x p l a i n e d the extent to which the nurse employed by t h i s c e n t r e w i l l need to be i n v o l v e d i n the i n i t i a l r e c r u i t m e n t of s u b j e c t s . A d m i n i s t r a t o r ' s Signature Date 90 , as the Researcher's Signature Date 91 APPENDIX IV Interview Guide I C l i e n t Care L e v e l (to be c o l l e c t e d from Adult Day Care Nurse) PC IC1 IC2 IC3 EC II Demographics ( c o l l e c t e d d u r i n g the i n t e r v i e w ) 1. Age ( i n years) 2. Sex F M 3. L i v i n g Arrangements Alone Own Residence Spouse S e n i o r s ' Housing C h i l d r e n Other 4. M a r i t a l Status S i n g l e Married Widowed Divorced Separated Other 8. Adu l t Day Care Attendance: a) Length of time a t t e n d i n g Adult Day Care b) Number of Days per Week 92 III General Interview Guide 1) What was happening i n your l i f e t h a t l e d up to your a t t e n d i n g ADC? [probes: E x p e r i e n c i n g l o n e l i n e s s , sadness, d e p r e s s i o n , s o c i a l i s o l a t i o n , a decreased a b i l i t y to c a r r y out a c t i v i t i e s such as meal p r e p a r a t i o n , p h y s i c a l i l l n e s s e s , other sources of s t r e s s ? ( c a r e - g i v e r s t r e s s ? ) 2) How o f t e n would you say that you v i s i t with the nurse i n your c e n t r e ? (probes: r a r e l y , each time you a t t e n d , e t c ? ] 3) Why do you thin k the nurse i s there? a) i s she someone you can t a l k to when you f e e l upset, l o n e l y , e t c . ? 4) As people age, they o f t e n encounter an i n c r e a s i n g number of p r o b l e m s / s i t u a t i o n s / d i f f i c u l t i e s . a) Which ( i f any) of these have you exper ienced? [probes: decreased m o b i l i t y o u t s i d e or w i t h i n your home, fear of f a l l i n g , p h y s i c a l i l l n e s s , p a i n , l o s s of f a m i l y members/friends, e t c . ] b) What e f f e c t do you think these problems have had on your a b i l i t y to remain independent and l i v i n g i n your home? c) What type of a s s i s t a n c e do you f e e l would help you d e a l with the c o n c e r n s / d i f f i c u l t i e s you have i d e n t i f ied? 5) What types of t h i n g s does the nurse help you monitor? [probes: weight, d i e t , blood p r e s s u r e , blood sugar, medications, s k i n problems, e t c . ] 93 6 ) What other types of th i n g s has the nurse at your centre a s s i s t e d you with or given you advice or in f o r m a t i o n about? [Probes: p a i n , s l e e p d i s t u r b a n c e s , d i z z i n e s s , s i d e e f f e c t s of medications, f a t i g u e , g e n e r a l malaise, b o w e l / g a s t r i c d i s t u r b a n c e s , d i e t a r y concerns, v i s u a l , a u d i t o r y d i s t u r b a n c e s , weight c o n t r o l , e x e r c i s e , e t c ] 7) Do you have any s p e c i f i c medical problems f o r which the nurse has provided you with i n f o r m a t i o n , c o u n s e l l i n g or monitoring s e r v i c e s ? [probes: d i a b e t e s , h y p e r t e n s i o n , a r t h r i t i s , e t c . ] 8) A l l people encounter events or s i t u a t i o n s throughout t h e i r l i f e which can leave them f e e l i n g l o n e l y , depressed, f r u s t r a t e d , f e a r f u l , and/or angry. a) Who do you tu r n to t o d i s c u s s these f e e l i n g s ? [probes: spouse, c h i l d r e n , f r l e n d s , o t h e r f a m i l y members, doc t o r , nurse?] b) Is the nurse someone you can t a l k to about these f e e l i n g s ? c) If so, co u l d you d e s c r i b e how she was h e l p f u l ? 9) What impact has a t t e n d i n g ADC had on you? [probes: Increased c o n f i d e n c e , f e e l i n g s of membership or 'belonging', sense of s e l f - w o r t h , decreased f e e l i n g s of l o n e l i n e s s ? ] 10) How has your l i f e changed s i n c e you s t a r t e d a t t e n d i n g ADC? 11) How do you think your needs have changed s i n c e you f i r s t s t a r t e d a t t e n d i n g ADC? 94 12) What other types of s e r v i c e s do you think the nurse a t your center c o u l d provide? 13) Do you p a r t i c i p a t e i n any s m a l l groups a t your c e n t r e that are organized or lead by the nurse? [probes: reminiscence, l i f e review, d i s c u s s i o n s , e t c . ] 14) Has the nurse a t your center ever helped you to l i n k up with other agencies i n the community? ( S e n i o r s ' groups, s p e c i a l i z e d c o u n s e l l i n g s e r v i c e s , support groups, e t c ) 15) Has anyone ever r e f e r r e d you to a s p e c i a l i z e d s e r v i c e ? ( p o d i a t r i s t , d i a b e t i c c l i n i c , d e n t a l c l i n i c , e t c ) 16) What e f f e c t do you t h i n k i t would have on you i f there was not a nurse a t your c e n t r e ? 17) I f there was not a nurse a v a i l a b l e at your c e n t r e , where might you have gone to seek a s s i s t a n c e f o r the problems/concerns you have experienced?
Thesis/Dissertation
eng
Nursing
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Meeting the nursing care needs of the elderly in the community : clients' perspectives on adult day care
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