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The transition to institutional living : the experience of elderly people Allen, Natalie Ruth 1985

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THE TRANSITION TO THE EXPERIENCE NATALI B . A . , V i c t o r i a U n i v e r s i t y , INSTITUTIONAL LIVING: OF ELDERLY PEOPLE By RUTH ALLEN Wel l ing ton , New Zealand, 1978 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 thes i s as conforming to the required standard THE UNIVERSITY OF BRITISH COLUMBIA Ju ly 1985 © N a t a l i R. A l l e n , 1985 In present ing th i s thes i s i n p a r t i a l f u l f i l m e n t of the requirements for an advanced degree at the U n i v e r s i t y of B r i t i s h Columbia, I agree that the L i b r a r y s h a l l make i t f r e e l y a v a i l a b l e fo r reference and s tudy. I fur ther agree that permiss ion fo r extensive copying of th i s thes i s for s c h o l a r l y purposes may be granted by the head of my department or by h i s or her r e p r e s e n t a t i v e s . I t i s understood that copying or p u b l i c a t i o n of t h i s thes i s f o r f i n a n c i a l ga in s h a l l not be allowed without my w r i t t e n permis s ion . Department of s^&c+s&m The U n i v e r s i t y of B r i t i s h Columbia 1956 Main M a l l Vancouver, Canada V6T 1Y3 Date /fJC DE-6 (3/81) Abstract The T r a n s i t i o n to I n s t i t u t i o n a l L i v i n g : The Experience of E l d e r l y People The purpose of th i s study i s to i d e n t i f y how e l d e r l y subjects perce ive t h e i r t r a n s i t i o n from home to i n s t i t u t i o n a l l i v i n g . The study was conducted with a convenience sample of f i v e sub ject s , 6-13 months fo l lowing t h e i r admission to a u n i t which provides care for dependent e l d e r l y c l i e n t s . The methodology introduced by Glaser and Strauss (1967), f o r the d i scovery of grounded theory, was used. A conceptua l i za t ion of the t r a n s i t i o n to i n s t i t u t i o n a l l i v i n g as f i v e sequent ia l and i n t e r - r e l a t e d phases i s in t roduced . These phases are : a n t i c i p a t i o n , r e a c t i o n , i n t e r p r e t a t i o n , negot i a t ion and i n t e g r a t i o n . In the f i r s t two phases sub ject s ' responses to challenges to development, introduced by the t r a n s i t i o n , tend to predominate. The t h i r d and fourth phases are character ized by sub ject s ' working through these challenges to achieve mastery wi th in the new s i t u a t i o n . The f i n a l phase i s manifest i n each i n d i v i d u a l ' s a t t r i b u t i n g personal meaning to the t r a n s i t i o n wi th in the context of h i s or her t o t a l l i f e . Mastery wi th in the new s i t u a t i o n i s achieved through problem s o l v i n g approaches to increa s ing dependency, acceptance of personal r e s p o n s i b i l i t y for adjustment, and the percept ion of institutionalization as but one incident in each individual's l i f e history. This transition was found to dif f e r from those described amongst younger populations. It i s proposed that this difference occurs as a function of developmental stage, f r a i l t y , and the environmental situation. The findings of this study a) emphasize the h o l i s t i c nature and complexity of nursing practice with f r a i l elderly clients, b) support the use of concepts from developmental theory as a basis for nursing practice with elderly clients, and c) suggest ways in which nursing education and research may contribute to the development of nursing care for elderly clients. i v TABLE OF CONTENTS Page Abstract i i Table of Contents i v L i s t of Figures i x Acknowledgement x CHAPTER ONE INTRODUCTION TO THE STUDY 1 Relocat ion of the E l d e r l y 1 Rat ionale for the Study 4 Purpose of the Study 6 D e f i n i t i o n of Terms 7 Assumptions 8 L imi ta t ions of the Study 8 Summary 9 CHAPTER TWO REVIEW OF LITERATURE 10 H i s t o r i c a l Review of Research . . ' 10 The Findings of Re locat ion Research 15 Demographic Pred ic tor s of I n s t i t u t i o n a l i z a t i o n 16 Var iab le s which Af fec t the T r a n s i t i o n to I n s t i t u t i o n a l L i v i n g 17 Environmental C h a r a c t e r i s t i c s 17 Pervasiveness 18 P r e d i c t a b i l i t y 19 C o n t r o l l a b i l i t y 20 Page Congruence Between Pre and P o s t - r e l o c a t i o n Environments 21 I n d i v i d u a l Resources and C h a r a c t e r i s t i c s 22 S o c i a l Support 23 Finance and Education 24 Health 25 Se l f -concept , Self-esteem and Ident i ty 26 L i f e S a t i s f a c t i o n 27 Coping S k i l l s 27 Symbolic Meanings of Relocat ion 30 Conc lus ion : The Concept of Relocat ion 31 CHAPTER THREE METHODOLOGY 35 Sample Se lec t ion 36 E t h i c a l Considerat ions 36 Data C o l l e c t i o n 37 Data Analys i s 38 R e l i a b i l i t y and V a l i d i t y 40 Summary 41 CHAPTER FOUR THE FINDINGS OF THE STUDY: TRANSITION AS "ADJUSTMENT" 42 Desc r ip t ion of the Sample 42 The T r a n s i t i o n 43 A n t i c i p a t i o n 48 v i Page Acknowledgement 49 Preparat ion 52 S e l e c t i o n 52 D i s t r i b u t i o n of Property 54 Reaction 55 Shock 55 D i s c o n t i n u i t y : Features and Ef fect s 56 D i s c o n t i n u i t y i n Relat ionships 57 D i s c o n t i n u i t y i n Environment 58 D i s c o n t i n u i t y i n A c t i v i t i e s 59 Lonel iness 61 Helplessness 63 In terpre ta t ion 65 Expla in ing A c t i v i t y Within the Unit 66 Role C l a r i f i c a t i o n 69 Negot ia t ion 71 Developing Coping Strategies 73 P a r t i c i p a t i n g 74 C o n t r o l l i n g 76 L i v i n g Beyond the I n s t i t u t i o n 79 Re la t ing to the World Outside 80 Reading 81 Assuming R e s p o n s i b i l i t y fo r Personal Adjustment 83 Integrat ion 88 v i i Page CHAPTER FIVE INTERPRETATION OF THE FINDINGS 95 Development i n Later L i f e 96 The T r a n s i t i o n to I n s t i t u t i o n a l L i v i n g 99 A n t i c i p a t i o n 100 Reaction 103 The Re la t ionsh ip Between I n s t i t u t i o n a l i z a t i o n and a Sense of Trust 106 The Re la t ionsh ip Between I n s t i t u t i o n a l i z a t i o n and the Maintenance of Personal Ident i ty 109 In te rpre ta t ion 111 Negot iat ion 113 Developing the A b i l i t y to Cope 114 Mainta ining C o n t r o l 118 Mainta ining or Developing Sources of Need S a t i s f a c t i o n 121 Integrat ion 123 Conclusion 125 CHAPTER SIX SUMMARY AND IMPLICATIONS OF THE STUDY 127 Summary . . 127 Impl icat ions of the Study 129 v i i i Page Implicat ions for Nursing Prac t i ce 129 Developmental Theory as a Basis f o r Nursing P r a c t i c e 130 Promoting Ego- integra t ion 133 Mainta ining Ego- integra t ion 133 Enhancing Ego- integra t ion 134 Impl icat ions for Nursing Education 135 Implicat ions for Nursing Research 137 The D e f i n i t i o n of the E l d e r l y Populat ion 137 T r a n s i t i o n Amongst E l d e r l y Subjects 138 Research with F r a i l E l d e r l y Subjects 139 Footnotes • 142 References 144 Appendices 160 A . Consent to P a r t i c i p a t e i n Research Study 160 B. Condit ions of P a r t i c i p a t i o n i n Research Study 161 C . Interview Guide 163 ix LIST OF FIGURES Page Figure One C h a r a c t e r i s t i c s of the Sample Populat ion 44 Figure Two The C h a r a c t e r i s t i c s of the T r a n s i t i o n to I n s t i t u t i o n a l L i v i n g 47 Figure Three A L i f e Stage Theory of Development 97 X ACKNOWLEDGEMENT I wish to express my gra t i tude to the New Zealand Department of Education and the B r i t i s h Commonwealth Nurses' War Memorial Fund for the f i n a n c i a l a s s i s tance that made t h i s study p o s s i b l e , to Ms Rose Murakami and Dr . Margaret Campbell for t h e i r constant guidance and support throughout the research experience, and the f i v e people who so w i l l i n g l y shared t h e i r experiences with me. 1 CHAPTER ONE INTRODUCTION TO THE STUDY For most people home i s a s p e c i a l p l ace : a place which provides a p r e d i c t a b l e , comfortable, and emotional ly s i g n i f i c a n t s e t t i n g ; a p lace fo r r e f r e s h i n g , mainta in ing , and sus ta in ing one's s e l f i n the busyness of the everyday wor ld . A move from home i s a p o t e n t i a l l y s t r e s s f u l experience for any i n d i v i d u a l . I t requires adjustment, p a r t i c u l a r l y when there i s an associated disturbance of f a m i l i a r routines and s o c i a l and emotional r e l a t i o n s h i p s . While any r e l o c a t i o n may have p o s i t i v e and/or negative outcomes, most research associates r e l o c a t i o n with lo s s , s tress and adjustment. This a s soc i a t ion has been descr ibed i n studies of i n d i v i d u a l s of a l l age groups i n a v a r i e t y of h i s t o r i c a l , c u l t u r a l , and geographic se t t ings (Bowlby, 1969; Dohrenwend & Dohrenwend, 1974; Lundstedt, 1963; M a r r i s , 1961; Young & Wilmott, 1957) . This study descr ibes how a smal l group of o lder adults experienced r e l o c a t i o n . I t u t i l i z e s the personal accounts of t r a n s i t i o n from home to i n s t i t u t i o n a l l i v i n g to provide i n s i g h t i n t o the common features of that t r a n s i t i o n . Relocat ion of the E l d e r l y Within modern s o c i e t i e s the motivat ion for r e l o c a t i o n i s seen to vary with age (George, 1980). Whereas for younger people 2 the move to a new home i s seen as an opportunity for per sona l , career or fami ly development or ga in , for the e l d e r l y i n d i v i d u a l r e l o c a t i o n i s genera l ly a r e f l e c t i o n of l i m i t a t i o n s i n f i n a n c i a l or p h y s i c a l capac i ty . For the young, r e l o c a t i o n can be associated with expansion of freedom and independence. I f the move i s to an i n s t i t u t i o n , i t i s seen as temporary and as a means to a t t a i n i n g an end. For the e l d e r l y , i t i s u s u a l l y a move to a more r e s t r i c t e d s e t t i n g and a more dependent way of l i f e . Studies of the r e l o c a t i o n of e l d e r l y people descr ibe moves i n up to four d i f f e r e n t d i r e c t i o n s . These inc lude moves from (a) one community s e t t i n g to, another, (b) the community to an i n s t i t u t i o n , (c) one i n s t i t u t i o n to another, and (d) an i n s t i t u t i o n to the community (Schulz & Brenner, 1977; Yawney & S lover , 1979). This study explores the t r a n s i t i o n from home to an i n s t i t u t i o n - i n t h i s case an extended care u n i t . In B r i t i s h Columbia extended care un i t s provide care fo r i n d i v i d u a l s c l a s s i f i e d wi th in the most dependent c l i e n t c a tegor i e s . 1 The p r e c i p i t a t i n g f ac tor i n t h i s t r a n s i t i o n i s seen as the i n a b i l i t y to l i v e independently, with or without s o c i a l support, and the associated need to f i n d an environment which can provide the serv ices and support the i n d i v i d u a l r e q u i r e s . George (1980) exp la ins : Old-age i n s t i t u t i o n s e x i s t i n order to provide a v a r i e t y of s e l f - c a r e and medical services to people who are unable to care for themselves (at l ea s t i n the short r u n ) . 3 Consequently the d e c i s i o n to enter an i n s t i t u t i o n i s a p u b l i c demonstration that one i s no longer competent -per sona l ly or i n terms of m o b i l i z i n g other resources - to care for onese l f . I t ' s d i f f i c u l t for o lder i n d i v i d u a l s to acknowledge t h i s degree of dependency, and they value independence as a cornerstone of personal wel l -be ing (p. 115) . This quotat ion introduces the idea of meanings associated with r e l o c a t i o n . For each i n d i v i d u a l r e l o c a t i o n may have a v a r i e t y of symbolic meanings. Shanas (1962) suggested that o lder people associated moving to an i n s t i t u t i o n with a loss of independence, r e j e c t i o n by c h i l d r e n and a prelude to death . With r e l o c a t i o n to an extended care u n i t there appears to be a s i t u a t i o n i n which the process of ad jus t ing to a new environment i s compounded by the reasons for the r e l o c a t i o n , the need to leave behind a p a r t i c u l a r way of l i f e and i t s a s s o c i a t i o n s , and p o s s i b l y the symbolic meanings that the move has for the i n d i v i d u a l . Wilson (1983), i n a phenomenological study of o lder people a n t i c i p a t i n g i n s t i t u t i o n a l i z a t i o n , questions the s c i e n t i f i c perspect ives adopted (and thus the methodology used) by geronto log i s t s to def ine the s a l i e n t p sycho log i ca l i ssues for o lder people about to enter an i n s t i t u t i o n . Wilson agreed with Meyerhoff (1978) that the p s y c h o l o g i c a l f ac tors i n the process of aging inc lude a quest for "the sense of constancy and r e c o g n i z a b i l i t y , the i n t e g r i t y of the person over time" (p. 37) . At the same time Wilson (1983) seems to suggest that r e l o c a t i o n , ra ther than r a i s i n g new i s sues , i n t e n s i f i e d the i n d i v i d u a l ' s search for personal meaning and attempts to make sense of or f ind 4 a pat tern i n l i f e , and the need to f i n d c o n t i n u i t y of purpose and personhood over t ime. From the phenomenological perspect ive of wr i te r s such as Meyerhoff (1978) and Wilson (1983), r e l o c a t i o n can be conceptual ized as a f ac tor which may i n h i b i t development. Er ikson (1959) descr ibes the goal of o ld age as i n t e g r a t i o n and the f indings of both of the above studies (Meyerhoff, 1978; Wi l son , 1983) seem to suggest that the e l d e r l y people interviewed were attempting to a f f i rm themselves and t h e i r l i v e s as having had meaning. In Wil son ' s study, t h i s attempt at s e l f - a f f i r m a t i o n seemed to be complicated by the questions ra i sed with t h e i r a n t i c i p a t e d i n s t i t u t i o n a l i z a t i o n . Rat ionale for the Study L i t e r a t u r e on r e l o c a t i o n introduces a v a r i e t y of observable and measurable f ac to r s , w i t h i n and beyond an i n d i v i d u a l , which are seen to contr ibute to the outcomes of r e l o c a t i o n for the e l d e r l y . Most authors suggest that manipulation of these factors can a f f ec t adjustment to the new environment (Brand & Smith, 1974; Lieberman & Tobin , 1983). Although i t has been descr ibed i n various ways, h i s t o r i c a l l y nur s ing ' s concern has been with the nurture of the i n d i v i d u a l . The nurse seeks to maintain the i n t e g r i t y of the i n d i v i d u a l by prov id ing support i n times of change. Orlando (1961) proposed that the knowledge needed to care for an i n d i v i d u a l i n th i s way was derived from the general p r i n c i p l e s 5 developed i n ba s i c and appl ied sc iences , and the meanings that a p a r t i c u l a r s i t u a t i o n has for the i n d i v i d u a l . In 1978 Mar sha l l , making a p lea for a r a d i c a l s cho la r sh ip i n gerontology, descr ibed gerontology as a " t i n k e r i n g trade" r e f l e c t i n g a normative bias and focusing on " i n d i v i d u a l s and how they might adjust (be adjusted) to the ongoing system" (p. 167). C e r t a i n l y the l i t e r a t u r e on r e l o c a t i o n wr i t t en dur ing the 1960's and 70's does seem to r e f l e c t th i s b i a s . Marsha l l claimed that "our understanding of the processes of aging should be der ived from the perspect ives and r e a l i t i e s of the aged themselves" (p. 167). For nurs ing then, r e l o c a t i o n l i t e r a t u r e provides l i m i t e d i n s i g h t i n t o the q u a l i t a t i v e aspects of r e l o c a t i o n from the perspect ive of the e l d e r l y person, and thus provides an incomplete bas is for p r a c t i c e which recognizes the h o l i s t i c i n t e g r i t y of the e l d e r l y i n d i v i d u a l and the sub jec t ive i n t e r p r e t a t i o n s of the r e l o c a t i o n experience. In 1968 Johnson, w r i t i n g about theory development i n nur s ing , agreed that p r o f e s s i o n a l knowledge der ived from more than the v a l i d a t i o n of ba s i c sc ience p r i n c i p l e s i n p r a c t i c e , and added " P r o f e s s i o n a l d i s c i p l i n e s are ob l iga ted to go a step beyond explanat ion and p r e d i c t i o n to the development of p r e s c r i p t i v e theory" (p. 374) . Two studies which attempt to provide p r e s c r i p t i v e theory for nurs ing do so from the perspect ive that the e l d e r l y person i s r e a c t i v e and var i ab le s can be manipulated 6 to achieve des i red behaviours (Rosswurm, 1983; Simms, Jones & Yoder, 1982). Apart from Wil son ' s (1983) study which focuses on the pre-r e l o c a t i o n experience, and Newton's (1981) f i r s t person account of her i n s t i t u t i o n a l i z a t i o n , there seems to be l i t t l e which recognizes r e l o c a t i o n as an experience to be in terpre ted w i t h i n the context of an unique l i f e l i v e d wi th in a p a r t i c u l a r h i s t o r i c a l s i t u a t i o n . L i t e r a t u r e acknowledges the d i f f i c u l t i e s of obta in ing information through interviews of the f r a i l e l d e r l y (Bloom et a l . , 1971; Burnside, 1973) and t h i s i s r e f l e c t e d i n the f ac t that the experience of these people, p a r t i c u l a r l y when they are i n s t i t u t i o n a l i z e d , i s not w e l l understood. Yet th i s understanding i s necessary for the p r o v i s i o n of adequate nurs ing care for the increa s ing numbers of e l d e r l y people , who with the present care d e l i v e r y system, are l i k e l y to become i n s t i t u t i o n a l i z e d . This study, then, seeks to provide some understanding of what i t i s l i k e to move to a communal home and to attempt to meet personal goals wi th in the i n s t i t u t i o n a l environment when one i s aged. Purpose of the Study The purpose of t h i s study i s to i d e n t i f y how e l d e r l y i n d i v i d u a l s perceive t h e i r t r a n s i t i o n from home to i n s t i t u t i o n a l l i v i n g . I t seeks to e l i c i t de sc r ip t ions of personal r e l o c a t i o n 7 experiences, and to use these to d i scover and descr ibe common features of the t r a n s i t i o n to i n s t i t u t i o n a l l i v i n g for e l d e r l y people . D e f i n i t i o n Of Terms T r a n s i t i o n The process of t r y i n g to achieve mastery wi th in a new environment. T r a n s i t i o n i s assumed to begin at the time planning for r e l o c a t i o n commences.2 Mastery An i n d i v i d u a l ' s percept ion of l i v i n g h i s or her l i f e to the extent des i red or pos s ib le wi th in a given s i t u a t i o n . Relocat ion Relocat ion i s the move from an i n d i v i d u a l ' s home to an extended care u n i t . Transfer may be d i r e c t or through an acute care u n i t , but t h i s i s the f i r s t experience of an t i c ipa ted permanent or i n d e f i n i t e residence and a need for as s i s tance with meeting personal needs. Extended Care Unit An i n s t i t u t i o n for people who, because of i l l n e s s , marked p h y s i c a l or f u n c t i o n a l d i s a b i l i t y , require long-term h o s p i t a l i z a t i o n , but not a l l the resources of an acute , r e h a b i l i t a t i o n , or p s y c h i a t r i c h o s p i t a l . Twenty-four hour p r o f e s s i o n a l nurs ing and a l l i e d hea l th serv ices which emphasize r e s t o r a t i o n and maintenance of funct ion and the s o c i a l needs of 8 the pa t i en t are provided (Hospi ta l Programs, B r i t i s h Columbia, M i n i s t r y of Heal th , 1984). E l d e r l y Persons over 65 years of age. Assumptions The study i s based on the assumptions tha t : 1. E l d e r l y people are autonomous, independent and r a t i o n a l beings , and that age, p h y s i c a l f r a i l t y and i n s t i t u t i o n a l i z a t i o n of themselves do not preclude t h i s . 2. Responses to r e l o c a t i o n are determined by the i n d i v i d u a l and environment i n i n t e r a c t i o n . I n d i v i d u a l responses are mediated through personal i n t e r p r e t a t i o n of a s i t u a t i o n and are d i r e c t e d towards modi f i ca t ion and r e d e f i n i t i o n of personal -environmental i n t e r a c t i o n inso far as t h i s i s necessary to maintain personal i n t e g r i t y . 3. The accounts of r e l o c a t i o n experiences given by e l d e r l y subjects cons t i tu te r e l i a b l e and v a l i d in format ion . L imi ta t ions of the Study 1. The subjects were a l l l i v i n g wi th in the same i n s t i t u t i o n and were se lected on the basis of t h e i r a b i l i t y to r e f l e c t upon and discuss t h e i r personal experience. This sample may be seen as biased i n that : (a) The s e l e c t i o n of subjects experiencing one p a r t i c u l a r type of r e l o c a t i o n , and t h e i r l i v i n g wi th in the same i n s t i t u t i o n , 9 meant that they represent one p a r t i c u l a r subgroup of the t o t a l popu la t ion . (b) The sample was very smal l and was made up of i n d i v i d u a l s who could be descr ibed as more p h y s i c a l l y , p s y c h o l o g i c a l l y or s o c i a l l y competent than many of t h e i r peers i n the s e t t i n g . 2. Data were obtained through re t ro spec t ive accounts which are inf luenced by each sub jec t ' s a b i l i t y to r e c a l l experiences and f e e l i n g s . A l o n g i t u d i n a l study would have enabled more prec i se d e s c r i p t i o n of the subjects ' experience, but the a v a i l a b l e time precluded t h i s . Summary This study explores the r e l o c a t i o n of e l d e r l y people who have moved from home to an extended care u n i t . I t arose from the observat ion that the l i t e r a t u r e on r e l o c a t i o n appeared confusing and i n c o n c l u s i v e , and provided l i t t l e on which to base nurs ing p r a c t i c e that recognizes the perspect ives and sub jec t ive r e a l i t y of the l i f e of the e l d e r l y person experiencing the t r a n s i t i o n to i n s t i t u t i o n a l l i v i n g . This study then seeks to provide some understanding of the t r a n s i t i o n experience of those who have made a new home i n an i n s t i t u t i o n and thus provide background knowledge for t h e i r care . 10 CHAPTER TWO REVIEW OF LITERATURE In t h i s chapter the major assumptions, f i n d i n g s , and impl i ca t ions of research re la ted to the i n s t i t u t i o n a l i z a t i o n of e l d e r l y people w i l l be examined to provide background to t h i s s tudy. This chapter w i l l : 1. Review the h i s t o r i c a l and present day approaches used i n r e l o c a t i o n research, and 2. Summarize the f indings of research i n r e l o c a t i o n . This study deals s p e c i f i c a l l y with e l d e r l y people re located to an extended care u n i t . Because the terminology used to descr ibe i n s t i t u t i o n s which provide care for the e l d e r l y var ie s throughout North America i t i s not pos s ib le to d i f f e r e n t i a t e wr i t ings which discuss r e l o c a t i o n to the type of f a c i l i t y def ined as an extended care u n i t i n B r i t i s h Columbia. Therefore , the s tudies reviewed are those that d i scuss r e l o c a t i o n from a home to i n s t i t u t i o n s for care other than medical care . Some references to general f indings about r e l o c a t i o n are made where th i s seems r e l e v a n t . H i s t o r i c a l Review of Research The study of r e l o c a t i o n of the e l d e r l y seems to have begun with the ea r ly d e s c r i p t i v e studies of Camargo and Preston i n 1945. At the same time Sp i tz was undertaking what was to become the f i r s t c l a s s i c a l study of the e f fects of i n s t i t u t i o n a l i z a t i o n 1 1 on infants and young c h i l d r e n (Bowlby, 1969; S p i t z , 1945). Lieberman (1974), l a t e r reviewing r e l o c a t i o n research, noted that the e f fects found among c h i l d r e n seemed to d i f f e r l i t t l e from those observed i n the e l d e r l y . Amongst the e a r l y research studies were two papers publ i shed i n 1961 (Alexandrowicz, 1961; Lieberman, 1961) which introduced the idea tha t , regardless of the condit ions surrounding i t , r e l o c a t i o n alone could have a s i g n i f i c a n t impact on the s u r v i v a l of o lder people — "a k ind of pure r e l o c a t i o n e f fec t " (Coffman, 1981). This e f f ec t became the focus of research i n the 1960's and increased m o r t a l i t y was c o n s i s t e n t l y found i n r e l a t i o n to r e l o c a t i o n ( A l d r i c h & Mendkoff, 1961; K i l l a n , 1970; Marcus, Blenkner, Bloom & Downs, 1971). Relocat ion research p r o l i f e r a t e d and Bourestam and Pastalan (1981) claim that as many as 200 reports of research on r e l o c a t i o n of the e l d e r l y were publ i shed i n the years 1960-80. However, Coffman (1981) noted that by 1967 geronto log i s t s were beginning to quest ion the value and conclusions of the r e l o c a t i o n s t u d i e s . C r i t i c i s m s made by wr i ter s such as Coffman (1981), Bourestam and Pastalan (1981), Schulz and Brenner (1977), and Borup and Gallego (1981) appear to a r i s e because (a) a v a r i e t y of research methodologies were used, and (b) numerous, apparently randomly chosen dependent and independent var iab le s were examined genera l ly without reference 12 to a t h e o r e t i c a l context or framework. As a r e s u l t the conclusions drawn were c o n t r a d i c t o r y . Questions ra i sed by wr i ter s such as Coffman (1981) and Schulz and Brenner (1977) led to the more recent attempts to summarize and c r i t i q u e the work done (Bqrup, Gallego & Heffernan, 1980; Coffman, 1981), and to develop conceptual frameworks wi th in which the re su l t s could be examined (Lieberman & Tobin , 1983; Schultz & Brenner, 1977) . Bourestam and Pastalan (1981), i n c r i t i q u i n g r e l o c a t i o n research, suggested that e a r l i e r s tudies attempted to assess whether r e l o c a t i o n had p o s i t i v e or negative e f fects on the e l d e r l y . I t was c l ea r to these wr i ter s that the search fo r s p e c i f i c causes d i d not recognize the complexity of the r e l o c a t i o n experience. They suggested that the questions which needed to be addressed i n c l u d e d : 1. Under what condit ions and with what populat ions are the negative and p o s i t i v e e f fects of r e l o c a t i o n most l i k e l y to be observed? 2. What are the most e f f e c t i v e s t ra teg ie s for mi t i ga t ing the negative consequences of re locat ion? Equa l ly s i g n i f i c a n t was Lieberman's (1974) quest ioning the i m p l i c a t i o n s of s tudies which emphasized m o r t a l i t y and could , there fore , lead to attempts to extend l i f e rather than cons ider ing in tervent ions which could a s s i s t i n maintaining the wel l -be ing of the e l d e r l y . 13 Relocat ion has u s u a l l y been seen as, or associated wi th , loss (Lieberman & Tob in , 1983). The questions asked by r e l o c a t i o n researchers were concerned with the adjustment made by the relocatees and assumed that i n d i v i d u a l s are s o c i a l i z e d to f i t in to a p r e v a i l i n g s o c i a l s t r u c t u r e . Re locat ion research has attempted to i d e n t i f y the s p e c i f i c condit ions which a s s i s t or i n h i b i t t h i s adjustment. However, although adjustment i s often discussed i n r e l o c a t i o n l i t e r a t u r e , attempts to descr ibe adjustment to r e l o c a t i o n as a process are l i m i t e d . Tobin and Lieberman (1976) assume that there i s a process which can be measured and suggest that each re locatee experiences a n t i c i p a t i o n , adjustment and adaptat ion . They used these stages as a framework wi th in which to examine changes i n p sycho log i ca l status during r e l o c a t i o n and re locatee behaviour which occurs dur ing t r a n s i t i o n . Yawney and Slover (1979) d i v i d e r e l o c a t i o n i n t o three stages: (a) d e c i s i o n and prepara t ion , (b) impact, and (c) s e t t l i n g i n . Pope (1978) describes (a) p repara t ion , (b) separa t ion , and (c) t r a n s i t i o n and i n c o r p o r a t i o n . These three , a l l s o c i a l workers, used the stages they proposed to c l a r i f y the v a r i e t y of s i t u a t i o n a l demands faced by the e l d e r l y person dur ing r e l o c a t i o n and the he lp and support that might be needed and could be o f f e r e d . However they r e f l e c t the l i t e r a t u r e genera l ly i n that the emphasis i s on preparat ion and separat ion and not on 1 4 means of p rov id ing support once the i n d i v i d u a l i s wi th in the i n s t i t u t i o n . U n t i l the 1980's r e l o c a t i o n research seems to have been conducted almost i n i s o l a t i o n from more general inve s t i ga t ions i n t o areas such as c o n t i n u i t y and development i n o l d age (Er ikson , 1959; Neugarten, 1966), and t r a n s i t i o n and coping throughout the l i f e cyc le (George, 1980; T i n d a l e , 1984). George (1980, 1984), w r i t i n g about t r a n s i t i o n and coping i n l a t e r l i f e from an i n t e r a c t i o n i s t per spec t ive , provides other than the normative view adopted i n much r e l o c a t i o n research . The i n t e r a c t i o n i s t perspect ive emphasizes the i n d i v i d u a l i n t e r p r e t a t i o n of s o c i a l s t ructure and the a b i l i t y to a f f ec t i t as w e l l as react to i t s demands. In th i s view s o c i a l s t ructure provides a context for behaviour. An i n d i v i d u a l re la tes to a s i t u a t i o n through i n t e r a c t i o n and i n t e r p r e t a t i o n , and i n responding to the s i t u a t i o n helps to shape and modify the s o c i a l s t r u c t u r e . There i s continuous negot ia t ion between the s i t u a t i o n and the i n d i v i d u a l which i n turn inf luences both the environment and the i n d i v i d u a l ' s s k i l l s and behaviour. Rather than emphasize r o l e loss the i n t e r a c t i o n i s t s i n gerontology emphasize change as ro le making, r o l e development or r o l e a c q u i s i t i o n (George, 1980; M a r s h a l l , 1979; T i n d a l e , 1984). They see an i n d i v i d u a l ' s l i f e as continuous. T h i s , i n t u r n , emphasizes concepts of meaning, i d e n t i t y , and c o n t r o l wi th in the 15 context of the human capac i ty for incorpora t ing and i n t e r n a l i z i n g an ex terna l r e a l i t y . Marsha l l accepts the view that with o l d age l i f e which has "been viewed as a preparat ion for something to come, becomes a preparat ion fo r dy ing" (1979, p . 353). As a r e s u l t of h i s s tudies of a t t i tudes towards death and dying i n two Canadian nurs ing homes, and i n a d i scus s ion of the concept of aging as a status passage, Marsha l l (1975a; 1975b) concludes that i n s t i t u t i o n a l i z a t i o n , or any s i t u a t i o n i n which an e l d e r l y person encounters others who wish to s t ruc ture or shape t h i s passage, i s threatening to personal i d e n t i t y . The use of an i n t e r a c t i o n i s t perspect ive as a basis for future research studies i n r e l o c a t i o n would r a i s e questions such as: 1. What i s the r o l e or task of an e l d e r l y person? 2. What a b i l i t i e s are necessary to perform t h i s role? 3. To what extent i s th i s ro le in ter rupted by i n s t i t u t i o n a l i z a t i o n ? 4. To what extent does any i n d i v i d u a l i n a p a r t i c u l a r s i t u a t i o n have the a b i l i t y , past experience with l e a r n i n g , resources and feedback to perform the role? The Findings of Relocat ion Research The factors which have been seen by researchers as i n f l u e n t i a l dur ing the process of r e l o c a t i o n of an e l d e r l y person inc lude demographic f ac tor s which increase the l i k e l i h o o d of 1 6 i n s t i t u t i o n a l i z a t i o n , and var iab le s which a f f e c t the adjustment to i n s t i t u t i o n a l l i v i n g . This l i t e r a t u r e review i s , there fore , organized i n three s e c t i o n s : 1. Demographic p r e d i c t o r s of i n s t i t u t i o n a l i z a t i o n . 2. The var i ab le s which a f f ec t adjustment to i n s t i t u t i o n a l l i v i n g . These inc lude environmental var i ab le s and c h a r a c t e r i s t i c s of the i n d i v i d u a l . 3. The symbolic meanings that r e l o c a t i o n has for the i n d i v i d u a l . Demographic Pred ic tor s of I n s t i t u t i o n a l i z a t i o n Those most l i k e l y to be i n s t i t u t i o n a l i z e d are : (a) women ( M i n i s t r y of Supply Serv ices , 1982; Palmore, 1976), (b) those of European o r i g i n (Eribes & Bradley-Rawls, 1978; Soldo, 1977), (c) the o l d o l d (Tobin & Lieberman, 1976), and (d) the f i n a n c i a l l y disadvantaged (Barney, 1977; Kahana, 1974). Whereas the o ld o ld are l i k e l y to experience a greater range and degree of d i s a b i l i t y , and for them the s i t u a t i o n i s compounded by the e f fec t s of aging and i n t e r a c t i o n with an aging fami ly , i t i s c l ear that these pred ic tor s of i n s t i t u t i o n a l i z a t i o n r e f l e c t more than increased impairment r e q u i r i n g the serv ices a v a i l a b l e only i n an i n s t i t u t i o n a l s e t t i n g (George 1980, p . 114). Studies suggest that the p r e c i p i t a t i n g fac tor i n i n s t i t u t i o n a l i z a t i o n of people over 65 to a l l types of f a c i l i t y i s l i v i n g a lone, e s p e c i a l l y when t h i s i s associated with the disappearance or absence of a support system (Barney, 1977; 17 Brody, Poulshock, & Masciocchi, 1978; Tobin & Lieberman, 1976). Variables Which A f f e c t the T r a n s i t i o n To  I n s t i t u t i o n a l L i v i n g The variables which a f f e c t the t r a n s i t i o n to i n s t i t u t i o n a l l i v i n g are considered i n two categories: (a) environmental va r i a b l e s , and (b) c h a r a c t e r i s t i c s of the i n d i v i d u a l . Environmental C h a r a c t e r i s t i c s I t i s commonly accepted that e l d e r l y people are l i k e l y to respond negatively to i n s t i t u t i o n a l environments (Lieberman, 1969; Townsend, 1962) . Almost a l l l i t e r a t u r e discussing the r e l o c a t i o n of an e l d e r l y person to an i n s t i t u t i o n e i t h e r accepts t h i s assumption or i s seen as demonstrating that i n s t i t u t i o n a l i z a t i o n i s s t r e s s f u l . George (1980) reports that r e l o c a t i o n within a community has a r e l a t i v e l y mild impact because most people move v o l u n t a r i l y to housing perceived as more sui t a b l e to t h e i r needs, but that the p i c t u r e d i f f e r s g r e a t l y f o r the person who moves i n t o an i n s t i t u t i o n . Several researchers compare intracommunity r e l o c a t i o n with i n s t i t u t i o n a l i z a t i o n but do not consider what p r e c i p i t a t e d the move or the p o s s i b i l i t y of factors such as diminished adaptive capacity of the i n d i v i d u a l contributing to the outcome. George (1980) c l a s s i f i e s the outcomes of r e l o c a t i o n from one environment to another as: (a) d i s r u p t i o n of established behavior patterns and routines, (b) d i s r u p t i o n of established s o c i a l r e l a t i o n s h i p s , and (c) a sense of loss experienced as an emotionally s i g n i f i c a n t p h y s i c a l and s o c i a l environment. These outcomes are seen to mediate the negative e f f e c t s of r e l o c a t i o n . o Research on the r e l a t i o n s h i p of environmental c h a r a c t e r i s t i c s to the outcomes of r e l o c a t i o n has tended to focus i n four areas, namely: 1. The pervasiveness of the environment. 2. The extent to which the i n d i v i d u a l i s able to p r e d i c t the environment. 3. The extent to which the i n d i v i d u a l has control over both the decision to relocate and the environment i t s e l f . 4. The congruence between the pre- and post-relocation environments which determine the degree of adjustment required by the i n d i v i d u a l . Pervasiveness of the environment. Tobin and Lieberman (1976) claim that Goffman's (1961) d e f i n i t i o n of the " t o t a l i n s t i t u t i o n " provides the most compelling statement of the reasons f o r the e f f e c t s of i n s t i t u t i o n s on e l d e r l y people. Goffman (1961) describes a t o t a l i n s t i t u t i o n as one i n which the a c t i v i t i e s of everyday l i f e such as sleep, work and play take place i n the same s e t t i n g with the same people. However, Myles (1977), also using the concept of the t o t a l i n s t i t u t i o n (Goffman, 1961), examined the hypothesis that the ef f e c t s of i n s t i t u t i o n a l i z a t i o n among the e l d e r l y would 19 exacerbate the s o c i o - p s y c h o l o g i c a l consequences of i l l n e s s . Measurement was based on se l f -assessed hea l th status compared with ob jec t ive hea l th s t a t e . The f indings of Myles' study suggest that i n Manitoba, i n s t i t u t i o n s for the aged do indeed provide a p r o s t h e t i c environment and sub jec t ive r e l i e f from i l l n e s s rather than inducing i a t r o g e n i c i l l n e s s . P r e d i c t a b i l i t y of the environment. The extent to which an i n d i v i d u a l could accura te ly a n t i c i p a t e the environment i n h i s or her new home was of i n t e r e s t to severa l researchers . The hypothesis was that pre-knowledge of an environment decreased s t res s and the knowledge required could be provided i n the a n t i c i p a t o r y phase of r e l o c a t i o n i n the form of educat ional programmes and counse l l ing (Gutman & Herbert , 1976; Bourestam & Tars , 1974). These s tudies suggested that (a) preparat ion should be made over a per iod of time as th i s allows for adequate adjustment before the move, (b) the i n d i v i d u a l should be involved i n dec i s ions re la ted to the move, and (c) c o n t i n u i t y i n areas such as f r i e n d s h i p should be maintained through the r e l o c a t i o n . One group i n the Lieberman and Tobin 1983 study was given what the authors descr ibed as apparently i d e a l preparat ion for r e l o c a t i o n . They received explanations of the perceived benef i t s of the move, and were encouraged to view the move as voluntary rather than forced upon them by n e c e s s i t y . The researchers concluded that " I f both the future res idents of the home, and t h e i r f ami l i e s can organize t h e i r perceptions so as to perceive 20 the s i t u a t i o n i n t h i s way, the p a i n f u l e f f e c t s associated with the threat may be contained" (p. 72). C o n t r o l l a b i l i t y of the environment. Schulz (1976) hypothesized that f e e l i n g s such as helplessness and depression, and accelerated p h y s i c a l decline were a t t r i b u t a b l e to the i n d i v i d u a l ' s perception of h i s or her losing control i n a p a r t i c u l a r s i t u a t i o n . T y p i c a l l y a decrease i n p h y s i c a l capacity results i n a decrease i n the extent of the i n d i v i d u a l ' s c o n t r o l , and i n s t i t u t i o n a l i z a t i o n compounds the d i f f i c u l t y i n manipulating and c o n t r o l l i n g the environment. The consequences of t h i s loss are withdrawal and depression mediated by the f e e l i n g s of helplessness (Schulz & Alderman, 1973; S t r i e b & Schneider, 1971) . Other studies which examined the degree of c o n t r o l a v a i l a b l e to i n d i v i d u a l s within i n s t i t u t i o n s support the view that greater control i s conducive to increasing l i f e s a t i s f a c t i o n f o r the relocatees. These studies conclude that the e l d e r l y should have the opportunity to r e t a i n as much autonomy as possible (Shrut, 1965; Wolk & Telleen, 1976). Although control i s not often s p e c i f i c a l l y defined i n the r e l o c a t i o n research reports, some studies examine mobility as the means to c o n t r o l . Gubrium (1975) i n the book "Living and Dying i n Murray Manor" proposed that the i n d i v i d u a l needs to "create" the environment and that only the mobile and independent are able to do t h i s . Cutler (1972) suggested that adjustment to an 21 i n s t i t u t i o n was less s t r e s s f u l f o r those who had transport a v a i l a b l e and could get out beyond the i n s t i t u t i o n . Sherwood, Glassman, Sherwood, and Morris (1974), i n examining the c h a r a c t e r i s t i c s of those more or less s u i t a b l e f o r i n s t i t u t i o n a l i z a t i o n , found the less s u i t a b l e to be t y p i c a l l y white c o l l a r workers who were r e l a t i v e l y s a t i s f i e d with l i f e . They suggested that the data they c o l l e c t e d r e f l e c t e d that the response to i n s t i t u t i o n a l i z a t i o n i s mediated by the dif f e r e n c e i n c o n t r o l l a b i l i t y of the pre- and post-relocation environments. Congruence between pre- and post-relocation environments. L i f e space changes are usu a l l y seen to constitute a c r i s i s because they require adaption to and personal reorganization within a new environment. The i n d i v i d u a l may need to abandon many assumptions about the everyday world and replace them with others (Kahana, 1974). The d i s c o n t i n u i t y between pre- and post-relocation environments, rather than the differe n c e between s p e c i f i c aspects of each environment, mediates the degree to which the environment forces the i n d i v i d u a l to make new adaptive responses. The extent to which these environments d i f f e r , and thus the adjustment required of the i n d i v i d u a l , i s generally examined i n research studies (Turner, Tobin, & Lieberman, 1972). Thus an i n s t i t u t i o n which values and encourages high i n t e r a c t i o n and a c t i v i t y would be more sui t a b l e f o r the person used to exercising autonomy than f o r one who has always been r e l a t i v e l y passive. Kahana (1974), reviewing previous s tud ie s , claimed that the r e l a t i o n s h i p between s p e c i f i c i n d i v i d u a l and environmental c h a r a c t e r i s t i c s was p a r t i c u l a r l y important i n the adjustment of any r e l o c a t e e . The r e l a t i o n s h i p s discussed were those between (a) the i n d i v i d u a l s ' need for a c t i v i t y and the amount of s t imula t ion provided , (b) the i n d i v i d u a l s ' degree of a f f e c t i v e expression and the to lerance for expressing fee l ings wi th in the i n s t i t u t i o n , (c) the i n d i v i d u a l s ' a b i l i t y to t o l e r a t e ambiguity and the amount of s t ructure imposed by the environment, (d) the i n d i v i d u a l s ' degree of s e l f - c o n t r o l and the environmental f l e x i b i l i t y i n r e l a t i o n to i n d i v i d u a l needs. I t appears that the extent to which the environment succeeds i n recogniz ing the needs of a new res ident and provides a s e t t i n g which accommodates these needs re la te s to the degree to which s t ress and d e c l i n e are decreased. S i l b e r s t e i n (1979) proposed that the recogn i t ion of and accommodation to c l i e n t needs re l a ted d i r e c t l y to s t a f f morale . He saw s t a f f morale as the most i n f l u e n t i a l environmental f ac tor i n maintaining the welfare of e l d e r l y people i n an i n s t i t u t i o n because the s t a f f r o l e i n support was both c e n t r a l and powerful . I n d i v i d u a l Resources and C h a r a c t e r i s t i c s E l d e r l y i n d i v i d u a l s experiencing r e l o c a t i o n vary i n t h e i r capac i ty to adjust and i n the resources a v a i l a b l e to them to 23 a s s i s t t h e i r t r a n s i t i o n to a new way of l i f e . Many researchers proposed that s p e c i f i c p e r s o n a l i t y c h a r a c t e r i s t i c s or resources a v a i l a b l e to an i n d i v i d u a l could be measured and corre l a ted with r e l o c a t i o n outcomes (Coe, 1965; M i l l e r & Beer, 1977; Staats , 1974; Turner , Tobin & Lieberman, 1972). Where a c o r r e l a t i o n was found, p a r t i c u l a r l y i n e a r l y s tud ie s , i t was often impl ied that a cause/ef fect r e l a t i o n s h i p e x i s t e d . E a r l y r e l o c a t i o n l i t e r a t u r e discusses hea l th as a major in f luence on r e l o c a t i o n outcomes. Then there appeared to be a trend towards i n t e r e s t i n p sycho log i ca l f ac tors such as s e l f -esteem, se l f - concept , i d e n t i t y , and l i f e s a t i s f a c t i o n . More r e c e n t l y emphasis seems to have been on the d e f i n i t i o n and examination of i n d i v i d u a l coping s k i l l s . Probably because of the impl i ca t ions for s o c i a l p o l i c y that could r e s u l t from research f i n d i n g s , s o c i a l support, f inance and education seem to be the resources most commonly examined by researchers . Each of these factors i s discussed below. S o c i a l support . Numerous inves t i ga tor s have observed a d e c l i n e i n the number of s o c i a l ro le s with advancing age (Cumming & Henry, 1961; Maddox, 1964; Neugarten, Havighurst & Tobin , 1968). More recent ly i n v e s t i g a t i o n has centred on how the amount and q u a l i t y of i n t e r a c t i o n changes for e l d e r l y people i n d i f f e r e n t s o c i a l contexts (Lieberman & Tobin , 1983; Unruh, 1983). For the i n d i v i d u a l enter ing an i n s t i t u t i o n the scope and q u a l i t y of s o c i a l support networks are u s u a l l y seen to a f fec t adjustment. M i l l e r and Beer (1977) found that contact and v i s i t s with f ami l i e s contr ibuted to adjustment. Wells and McDonald (1981), who found that those i n s t i t u t i o n a l i z e d e l d e r l y repor t ing c lose primary re l a t ionsh ip s demonstrated succes s fu l adjustment to r e l o c a t i o n , concluded that the number and s t a b i l i t y of c lose r e l a t i o n s h i p s with fami ly and f r iends outs ide the i n s t i t u t i o n was of p a r t i c u l a r importance i n minimizing the e f fects of r e l o c a t i o n amongst e l d e r l y people . Kas l (1972), reviewing studies of i n s t i t u t i o n a l i z a t i o n concludes tha t : Re locat ion and/or i n s t i t u t i o n a l i z a t i o n w i l l have adverse e f fects on the p h y s i c a l and p s y c h o l o g i c a l w e l l being of the e l d e r l y i f : a) i t increases the p h y s i c a l d i s tance to f r i e n d s , k i n and age peers , as w e l l as various serv ices and f a c i l i t i e s ; b) i t i n t e r f e r e s with t h e i r engaging i n t h e i r usua l l e i s u r e and s o c i a l a c t i v i t i e s ; and c) i t represents a d e t e r i o r a t i o n i n the q u a l i t y of t h e i r dwel l ing u n i t and t h e i r neighbourhood along valued dimensions ( e . g . , independence, p r i v a c y , sa fety , s e c u r i t y , convenience, and f a m i l i a r i t y . ) (p.381) Coffman (1981) suggested tha t : . . . a l l r e loca t ions i n v o l v e d i s i n t e g r a t i v e and i n t e g r a t i v e processes and what r e a l l y matters i s the type that predominates . . . . Every r e l o c a t i o n means that some elements of support are l o s t and other elements must replace them. When the loss of support i s f a s ter and greater than i t s replacement, the predominant process i s d i s i n t e g r a t i v e and p o t e n t i a l l y harmful . When replacement support i s promptly and abundantly a v a i l a b l e the o v e r a l l process i s i n t e g r a t i v e and p o t e n t i a l l y b e n e f i c i a l . (p.493) Finance and educat ion. In a d i s cus s ion of coping i n l a t e r l i f e George (1980) sees f inance and education as both p a r t i c u l a r l y re levant resources . Finance can be seen as a means 25 to ins t rumenta l ly avoid s t ress and education i s product ive i n that i t genera l ly fos ters problem so lv ing s k i l l s and can f a c i l i t a t e r e a l i s t i c perceptions of s t r e s s . Hea l th . Good hea l th i s u s u a l l y seen to f a c i l i t a t e the succes s fu l negot i a t ion of environmental change and to enhance the personal percept ion of w e l l - b e i n g . Blenkner (1967) suggested that the i l l , the f r a i l , and those with b r a i n impairment or dysfunct ion face lower chances of s u r v i v a l than those with minimal impairment, regardless of how emotional ly or s o c i a l l y d i s turbed they may be . This r e l a t i o n s h i p was examined i n s tudies by B i r r e n (1959) and Coe (1965). Studies by Spasoff et a l . (1978) and Tobin and Lieberman (1976) reviewed how heal th status was a f fected by r e l o c a t i o n from the community to an i n s t i t u t i o n . Both reported short term (1 to 2 month) increments i n hea l th s ta tus , or at l ea s t a maintenance of h e a l t h , but s i g n i f i c a n t d e c l i n e a f te r one year . This was seen to represent short term gains from improved care with long term d e t e r i o r a t i o n as a r e s u l t of the progress ion of chronic i l l n e s s . Tobin and Lieberman (1976) attempted to def ine hea l th re l a t ed pred ic tor s of success fu l adjustment during r e l o c a t i o n . They recognized that there could be l i t t l e concensus i n determining hea l th or adequate funct ioning for a group as d iverse as 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 . Using mental h e a l t h , morale and s o c i a l funct ioning as i n d i c a t o r s of funct ioning and thus h e a l t h , they found that for those who survived the f i r s t three months of r e l o c a t i o n the var i ab le s they examined were not powerful pred ic tor s of subsequent adapta t ion . They saw t h i s as a funct ion of c h a r a c t e r i s t i c s of the contextual environment rather than c h a r a c t e r i s t i c s of the i n d i v i d u a l (p. 161). Se l f -concept , i d e n t i t y and se l f -es teem. T r a d i t i o n a l l y r e l o c a t i o n research has accepted that s o c i a l and p s y c h o l o g i c a l loss are associated with negative s e l f - e v a l u a t i o n and loss of i d e n t i t y . However, evidence suggests that se l f -concept and self-esteem remain remarkably s table over time (Lieberman & Tobin , 1983). Despite the developmental theory emphasis on maintaining i d e n t i t y i n o l d age, r e l o c a t i o n research seems to have ignored t h i s . Tobin and Lieberman (1976) descr ibe the task of l a t e r adulthood as to "maintain a sense of s e l f , despi te a d v e r s i t i e s that can erode i d e n t i t y " (p. 11). In t h e i r study they were concerned with the s t a b i l i t y and changes i n s e l f and the processes i n d i v i d u a l s employed to maintain i d e n t i t y . They used tests and scales to measure se l f -concept and degree of s e l f -esteem, and found a remarkable s t a b i l i t y of self- image i n i n d i v i d u a l s confront ing r a d i c a l l i f e changes. D i f f e r i n g from younger people who r e l i e d on current i n t e r a c t i o n to maintain s e l f - i d e n t i t y , i t appeared that e l d e r l y respondents required reference to past i n t e r a c t i o n s . Tobin and Lieberman concluded that "when both the present and the past f a i l as sources of s e l f - i d e n t i t y , the e l d e r l y are w i l l i n g to forego r e a l i t y 27 p r i n c i p l e s and use evidence based on wish and d i s t o r t i o n i n order to maintain s e l f - cons i s t ency" (p. 259). L i f e s a t i s f a c t i o n . O v e r a l l , perhaps because of the d i f f i c u l t y i n d e f i n i t i o n , few studies have addressed sub jec t ive components of the adjustment to i n s t i t u t i o n a l l i v i n g such as morale, l i f e s a t i s f a c t i o n or psychosoc ia l w e l l - b e i n g . Tobin and Lieberman (1976) comparing groups of community-l iving and i n s t i t u t i o n a l i z e d e l d e r l y , reported lower l eve l s of l i f e s a t i s f a c t i o n i n the former group both before and a f ter r e l o c a t i o n . In a d d i t i o n , there was l i t t l e a l t e r a t i o n i n the l e v e l of l i f e s a t i s f a c t i o n dur ing the r e l o c a t i o n process . In 1975, Morris was able to conclude that there was an increase i n l i f e s a t i s f a c t i o n amongst the r e c e n t l y i n s t i t u t i o n a l i z e d e l d e r l y . Spassoff et a l . (1978), i n two studies at one month and one year a f t e r i n s t i t u t i o n a l i z a t i o n , confirmed M o r r i s ' s f indings but i n a d d i t i o n found that s a t i s f a c t i o n with care had decreased over the year . Results of these s tudies seem ambiguous and do not c l a r i f y whether the genera l ly lower l eve l s of s a t i s f a c t i o n and wel l -be ing are the d i r e c t r e s u l t of r e l o c a t i o n or the r e s u l t of d e t e r i o r a t i o n i n hea l th and thus independence and p o t e n t i a l for s e l f - c a r e . Coping s k i l l s . Although coping has been conceptual ized i n many ways ( Janis , 1974; McGrath, 1970; Mechanic, 1970; T y l e r , 1978), George wrote i n 1980 "very l i t t l e i s known about coping 28 s k i l l s i n l a t e r l i f e . " However she continues " there are no compelling reasons to be l i eve that coping s k i l l s are re la ted to age" (p. 134). E a r l y studies which re la ted the amount of a c t i v i t y to adjustment were seen to suggest that a c t i v i t y enhanced the i n d i v i d u a l ' s a b i l i t y to cope with r e l o c a t i o n ( P h i l i p s , 1957; Roscow, 1965). In the 1960's, s tudies by Neugarten and associates (Neugarten, C r o t t y , & Tobin , 1964; Neugarten, Havighurst , & Tobin , 1968) suggested that o lder people u t i l i z e d coping s k i l l s learned i n e a r l i e r l i f e which were, there fore , long-term and s t a b l e . These studies i m p l i c i t l y accepted a c t i v i t y theory which equated high l eve l s of a c t i v i t y with high l eve l s of adjustment and saw p sycho log i ca l wel l -be ing to a large extent based i n s o c i a l i n t e r a c t i o n . Tobin and Lieberman (1976) a l so examined coping but descr ibed coping s k i l l s on ly i n r e l a t i o n to coping with threat and loss and not as genera l ized coping with everyday l i f e events . In t h e i r 1976 study they examined a conf igura t ion of p e r s o n a l i t y c h a r a c t e r i s t i c s and found a r e l a t i o n s h i p between a) aggress ion, h o s t i l i t y , assert iveness and narc i s s i sm and b) coping and long-term s u r v i v a l i n an i n s t i t u t i o n . In t h e i r 1983 study, where they again reviewed coping e f f o r t as a personal c h a r a c t e r i s t i c , e l d e r l y i n d i v i d u a l s were assessed i n three areas : 29 (a) degree of coping measured as the information absorbed, w i l l ingnes s to t a lk about r e l o c a t i o n , and d e n i a l ; (b) i n t e g r a t i o n measured as awareness and expression of re levant f e e l i n g s ; (c) mastery measured as perceived c o n t r o l and perceptions of the congruence between the pre ferred and a c t u a l r e l o c a t i o n environment. Fol lowing comparisons of the re su l t s of these measurements, Lieberman and Tobin (1983) concluded tha t : The greater the perceived c o n t r o l , the greater the congruence between the ac tua l environment, the less the l e v e l of experienced threat (p. 140), and suggested that : a l t e r a t i o n s i n the s e l f i n r e l a t i o n to an event . . . i s the key to understanding the major mechanisms for reducing the l e v e l of experienced threat and loss . . . . What matters i s the capac i ty to perce ive the s i t u a t i o n as being i n one's c o n t r o l where a l l i n d i c a t o r s suggest otherwise, (p. 140) Approaching r e l o c a t i o n from a c r i s i s i n t e r v e n t i o n per spec t ive , Rosswurm (1983) u t i l i z e d A q u i l e r a ' s and Mess ick 's (1978) c r i s i s i n t e r v e n t i o n framework to suggest that coping processes could be enhanced when a t t e n t i o n was given to ensuring r e a l i s t i c percept ion of r e l o c a t i o n and adequate s i t u a t i o n a l support w i t h i n the r e l o c a t i o n environment. The impetus fo r t h i s study came from what the author saw as the dearth of nurs ing research which i d e n t i f i e d coping mechanisms seen to promote adaptat ion of the e l d e r l y to r e l o c a t i o n . 30 The 1980's have seen a departure from the examination of the r e l a t i o n s h i p between personal and environmental var i ab le s during the process of r e l o c a t i o n . In beginning to consider coping mechanisms as a c e n t r a l f ac tor i n adjustment to a new environment, researchers appear to have recognized the e l d e r l y re locatee as an a c t i v e be ing , i f not a c t i v e l y a l t e r i n g the environment, at l ea s t having some c o n t r o l over how he/she w i l l perceive and respond to i t . Most present day t h e o r i s t s descr ibe at l ea s t two types of coping s t r a t e g i e s : (a) s t ra teg ie s which invo lve d i r e c t a c t i o n on the environment, and (b) s t ra teg ie s which process informat ion i n a way that i s able to reduce threat (Mechanic, 1974; P e a r l i n & Schooler , 1978). Using these concepts to examine coping s t ra teg ies i n o lder people Reid , Haas, and Hawkins (1977), and Staats , (1974) found that o lder people genera l ly used coping s ty l e s based on perceived i n t e r n a l c o n t r o l . Botwinick (1973) suggested that t h i s may r e l a t e to anxiety and a tendency to cautiousness i n performance s i t u a t i o n s . The Symbolic Meanings of Relocat ion Although developmental ists (Er ik son , 1959; Neugarten, 1966) see i d e n t i t y and c o n t i n u i t y as c e n t r a l features i n aging, and recent ly some s o c i a l s c i e n t i s t s suggest that emphasis should be placed on r o l e change rather than r o l e loss (George, 1980), genera l ly western soc i e ty views aging as negative and researchers 31 see loss models as p a r t i c u l a r l y re levant to the second h a l f of l i f e (Lieberman & Tobin , 1983). Lieberman and Tobin (1983) recognize that while decrease i n p h y s i c a l capac i ty , chronic impairment and r o l e loss may occur i n o l d age and lead to i n s t i t u t i o n a l i z a t i o n , the ef fects of these may be compounded by the symbolic meanings that s o c i e t y and the i n d i v i d u a l a t tach to them. P h y s i c a l s t ress i s increased when negative meanings are attached to an experience. Lieberman and Tobin (1983) associated fee l ings of loss with depression but found that these were not p r e d i c t i v e of long-term adapta t ion . They a l so found that for those awaiting admission, who saw r e l o c a t i o n associated with l o s s , there was no a s s o c i a t i o n between the a n t i c i p a t o r y p sycho log i ca l s tate and subsequent outcomes of r e l o c a t i o n . Conc lus ion : The Concept of Relocat ion Although there have been numerous studies of r e l o c a t i o n , a c l e a r concept of the i m p l i c a t i o n s of i n s t i t u t i o n a l i z a t i o n for e l d e r l y people has yet to be developed. S o c i a l s c i e n t i s t s in te re s ted i n understanding the apparent e f fec t s of i n s t i t u t i o n a l r e l o c a t i o n on e l d e r l y people have, as a group, accepted t r a d i t i o n a l q u a l i t a t i v e s c i e n t i f i c pe r spec t ive s . I n d i v i d u a l l y they have not often questioned the methods of t h e i r p a r t i c u l a r d i s c i p l i n e s i n r e l a t i o n to how e f f e c t i v e they are i n answering the questions asked. They often have assumed that r e l o c a t i o n i s a s p e c i f i c experience that can be i s o l a t e d from a t o t a l l i f e , and t h i s has meant that the s tudies done have almost e x c l u s i v e l y examined s p e c i f i c var iab le s (randomly l a b e l l e d as dependent or independent) and attempted to def ine the r e l a t i o n s h i p s between these v a r i a b l e s . Research studies have genera l ly assumed or suggested that moving to an i n s t i t u t i o n would be s t r e s s f u l and would have deter imenta l e f fect s on the e l d e r l y person. Some descr ibe these e f fec t s as a r i s i n g from factors w i t h i n the environment (Kahana, 1974; K i l l a n , 1970), others as a t t r i b u t a b l e to i n d i v i d u a l p e r s o n a l i t y or p h y s i c a l or cogn i t ive a b i l i t i e s , (Gordon & Vinacke, 1981; Wolk & T e l l e e n , 1976), while a t h i r d group a t t r i b u t e s i t to symbolic meanings ascr ibed to the experience of the i n d i v i d u a l (Lieberman & Tobin , 1983). A v a r i e t y of outcomes of r e l o c a t i o n which range from death to increased l i f e s a t i s f a c t i o n have been de sc r ibed . George (1984) introduces the d i f f i c u l t i e s associated with measuring s t ress at any p a r t i c u l a r time i n r e l a t i o n to a s p e c i f i c experience, c la iming that s t res s may occur at d i f f e r e n t times for d i f f e r e n t i n d i v i d u a l s i n any p a r t i c u l a r t r a n s i t i o n . The d i f f i c u l t y i n d e l i n e a t i n g normal aging and the d i sorders a r i s i n g from i l l n e s s and/or overwhelming change, and then d i s t i n g u i s h i n g between the e f fects of these dur ing the r e l o c a t i o n process has a l so led to confusion i n research r e s u l t s . Although i t can be claimed that most r e l o c a t i o n s tudies were t h e o r e t i c a l or pursued without w e l l defined conceptual frameworks (Schulz & Brenner, 1977), most researchers i m p l i c i t l y 33 focused t h e i r s tudies on lo s s—ei ther i n terms of p h y s i c a l capac i ty or loss of r o l e . Where p r a c t i c a l impl i ca t ions were suggested, these u s u a l l y assumed that the i n d i v i d u a l could be prepared or s o c i a l i z e d to f i t a s p e c i f i c environment. Where f ind ings have been seen as having impl i ca t ions for p o l i c y making, these are genera l ly seen to r e l a te to assessment and/or s e l e c t i o n and preparat ion for r e l o c a t i o n rather than to care w i t h i n the i n s t i t u t i o n . More r e c e n t l y t h e o r i z i n g about aging and the experience of e l d e r l y people has led to examination of the assumptions apparently made about e l d e r l y people i n Western s o c i e t i e s and the extent to which these are re levant cross c u l t u r a l l y (Marsha l l , 1980). While there i s no t r u l y comprehensive view or theory of aging, developmental ists have suggested concepts which appear to be c e n t r a l to a d i s cus s ion of ag ing . They suggest that as people progress through l i f e each experience i s der ived from and bu i ld s upon previous experience, l ay ing a foundation for l a t e r experience and development. Relocat ion i s then not an experience i s o l a t e d from, and i r r e l e v a n t to , the t o t a l l i f e of an i n d i v i d u a l . Whether r e l o c a t i o n can be viewed as a normal or l i k e l y concomitant of change i n o ld age i s debatable but the development of the concept of r e l o c a t i o n as a l i f e t r a n s i t i o n (George, 1980) appears to introduce concepts which are u se fu l i n examining the 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 from the 34 broader perspective of a l i f e s t y l e or r o l e change, with c h a r a c t e r i s t i c s both s i m i l a r to and d i f f e r e n t from other l i f e t r a n s i t i o n s . 35 CHAPTER THREE METHODOLOGY This study sought to understand the experience of e l d e r l y subjects who had re located from home to an extended care u n i t . Rather than seeking to c o n t r o l an experimental s i t u a t i o n , i t was designed to develop a conceptua l i za t ion of the t r a n s i t i o n to i n s t i t u t i o n a l l i v i n g from the personal accounts of the sub jec t s . The study design recognized the assumption that sub jec t ive experience i s e x i s t e n t i a l l y s i g n i f i c a n t , and a leg i t imate content i n the development of understanding of human behav ior . The methodology se lec ted was therefore conducive to that understanding. Data c o l l e c t i o n and a n a l y s i s , and the presentat ion of research f indings i n a conceptual form was guided by the "general method of comparative a n a l y s i s " introduced by Glaser and Strauss (1967, p . 1 ) . This method enables generation of theory from data and emphasizes l o g i c a l in fe rence , and i n d u c t i v e rather than deductive approaches to s c i e n t i f i c d i s covery . The developing theory i s grounded i n , and develops from the data c o l l e c t e d . R e c i p r o c a l l y the s e l e c t i o n of data to be c o l l e c t e d i s guided by the developing theory . This methodology i s u se fu l for the development of substantive theory i n s i t u a t i o n s i n which there i s l i t t l e or no theory to guide q u a l i t a t i v e research, or to gain " f re sh perspect ive i n a f a m i l i a r s i t u a t i o n " (Stern, 1980). 36 Sample Selection The study was c a r r i e d out i n an extended care u n i t which provides care f o r 300 residents. Residents were admitted to the unit according to c r i t e r i a l a i d down by the B r i t i s h Columbia Minis t r y of Health Hospitals Program (1984). 1 The convenience nonrandom sample was selected from residents admitted to the u n i t between October 1983 and J u l y 1984 with a view to interviewing subjects during November and December 1984 and January 1985. Subjects i n the sample a) were over 65 years of age, b) had s u f f i c i e n t hearing and a b i l i t y to take part i n the interviews, c) had been i n the i n s t i t u t i o n f o r 6 to 13 months, d) were w i l l i n g and competent to r e f l e c t upon and discuss t h e i r personal experience, and e) had been transferred to the extended care u n i t from home rather than an i n s t i t u t i o n , e i t h e r d i r e c t l y or through an acute care u n i t . From 130 admissions during the required time period, 11 subjects were selected as meeting a l l c r i t e r i a . Of these, f i v e people constituted the f i n a l sample. Others e i t h e r became i l l before interviews commenced or did not agree to take part i n the research. E t h i c a l Considerations I t had been assumed that e l d e r l y people are autonomous, independent and r a t i o n a l beings and that age, p h y s i c a l f r a i l i t y and i n s t i t u t i o n a l i z a t i o n did not preclude t h i s . In 37 g e r o n t o l o g i c a l l i t e r a t u r e cons iderat ion has f requent ly been given to the e t h i c a l issues which are ra i sed when research, p a r t i c u l a r l y experimental c l i n i c a l research, involves e l d e r l y subjects (Reich, 1978; S t r i e b , 1983). In th i s study cons idera t ion was given to the pos s ib le v u l n e r a b i l i t y of the e l d e r l y i n d i v i d u a l i n an i n s t i t u t i o n . Care was taken to v i s i t prospect ive subjects twice to ensure t h e i r understanding of the goals of the research, and what the research would require of them. Fol lowing these d i scuss ions each subject signed a Consent to P a r t i c i p a t e i n the Study form (Appendix A) and reta ined a copy of t h i s . The Condit ions of P a r t i c i p a t i o n i n the Research Study (Appendix B) had been read with each i n d i v i d u a l and i t s content and r a t i o n a l e exp la ined . Data C o l l e c t i o n A semi-structured interv iew schedule (Appendix C) was developed to provide a framework to guide e a r l y i n t e r v i e w s . A l l interviews were audio-taped and t r a n s c r i b e d . Notes were made fo l lowing interviews and used to c l a r i f y and enhance the t ranscr ibed audio-tapes . An e f f o r t was made to ensure that subjects c o n t r o l l e d the t ime, dura t ion and content of the i n t e r v i e w s . Interviews were c a r r i e d out whenever pos s ib le i n a smal l p r i v a t e in terv iew room. Two subjects were interviewed i n t h e i r bedrooms but p r ivacy was l i m i t e d and noise const i tuted a problem i n these s e t t i n g s . Four subjects were interviewed four t imes. 38 The f i f t h subject was interviewed only once as further suggested interviews caused her anxiety. Throughout interviews attempts were made to: 1. evoke d e s c r i p t i o n without prompting the subject as to what the content of that d e s c r i p t i o n might be, 2. encourage subjects to describe aspects of t h e i r experience that they might otherwise tend to ignore, and 3. v e r i f y with the subjects that the meaning of the experience had been c o r r e c t l y understood by the researcher. I d e a l l y data c o l l e c t i o n would continue u n t i l a l l data categories were saturated and concepts f u l l y developed. Time constraints meant that at the time interviews were terminated, no new categories were appearing but some categories may have been more f u l l y explored. Data Analysis A d e s c r i p t i o n of the t r a n s i t i o n to i n s t i t u t i o n a l l i v i n g experienced by e l d e r l y subjects was developed through data a n a l y s i s . Glaser and Strauss (1967) describe a formal procedure of analysis which enables the development of concepts grounded i n q u a l i t a t i v e data to provide a conceptual rather than a d e s c r i p t i v e account of a p a r t i c u l a r phenomena. This procedure f o r the development of grounded theory provides f o r a conceptualization as opposed to a concrete d e s c r i p t i o n of a p a r t i c u l a r phenomenon, and was used to guide the 39 analysis of data i n t h i s study. I t incorporates i n t e r a c t i v e and concurrent steps and because data c o l l e c t i o n i s guided and controlled by the emerging theory there i s no sharp d i v i s i o n between the a c t i v i t i e s of data c o l l e c t i o n and data a n a l y s i s . Data c o l l e c t i o n and analysis included: 1. Open-ended data c o l l e c t i o n guided by the general conceptual o r i e n t a t i o n and assumptions made e x p l i c i t i n Chapter One, and the primary interview schedule. Beyond t h i s , data c o l l e c t i o n was guided by the richness of the data. As ideas were introduced by the p a r t i c i p a n t s these were explored and further developed as relevance became apparent. 2. Concurrent coding and analysis of data to i d e n t i f y emerging primary categories. Data were coded, compared with other data and assigned to categories. 3. Concept formation. As categories developed these were compared and r e l a t i o n s h i p s between them sought and developed, so that numbers of categories could be reworked and reduced. Ultimately main ideas and themes became apparent and a tentative conceptual framework emerged. Concept formation involved a conscious s e l e c t i v e process i n determining the sa l i e n c y and importance of data items i n r e l a t i o n to major emerging ideas and themes. The ce n t r a l process of data analysis then was i n f e r e n t i a l and inductive. 40 4. Review of data and l i t e r a t u r e to i d e n t i f y a d d i t i o n a l categories or rework p a r t i c u l a r ca tegor ie s , and the r e l a t i o n s h i p between ca tegor ie s . 5. Data gathering of an i n c r e a s i n g l y s t ructured nature to i d e n t i f y s p e c i f i c c h a r a c t e r i s t i c s of the conceptual ca tegor ie s . 6 . Formation of the f i n a l conceptual framework and organiza t ion of concepts, connections and r e l a t i o n s h i p s w i t h i n i t , and refinement of the propert ies of each category. R e l i a b i l i t y and V a l i d i t y T r a d i t i o n a l research design requires that r e l i a b i l i t y and v a l i d i t y be demonstrated by meeting the c r i t e r i a that the phenomenon under i n v e s t i g a t i o n must be observable , measurable and lend i t s e l f to v e r i f i c a t i o n by other observers . R e l i a b i l i t y and v a l i d i t y i n q u a l i t a t i v e research require and i s a t ta ined i n the measure of f a i th fu lnes s to the phenomenon i t s e l f . To a t t a i n t h i s , three factors are considered: 1. The i n v e s t i g a t o r i s required to set as ide personal assumptions and preconceptions i n order to f u l l y access the sub jec t ive experience and meaning of the phenomena under s tudy. 2. An e f f o r t i s made to ensure the r e l i a b i l i t y of the data c o l l e c t e d and whether the i n t e r p r e t a t i o n of these data f u l l y descr ibes a l l major aspects of the experience i n the conceptua l i za t ion of i t . 4 1 3. Consideration of whether subjects do i n f a c t constitute "expert" witnesses i s also necessary. The basis f o r using subjective accounts as research data accepts that informants are self-observant and pay attention to themselves, t h e i r actions, and experiences. During the interviews subjects tended to r e i t e r a t e p a r t i c u l a r incidents from past and present l i f e . The frequency with which a p a r t i c u l a r data item reoccurred i n one or a l l of the subjects' accounts was not regarded as r e f l e c t i n g i t s importance i n r e l a t i o n to other ideas within the developing conceptual framework. However, p a r t i c u l a r l y i n r e l a t i o n to personal h i s t o r i c a l accounts, these were seen to in d i c a t e a need to reminisce and were used to support the v a l i d i t y of the concept of i n t e g r a t i o n used i n the f i n a l report. Summary The study provides a de s c r i p t i o n of the t r a n s i t i o n to i n s t i t u t i o n a l l i v i n g made by e l d e r l y people. Five subjective accounts of personal r e l o c a t i o n experiences are examined through content analysis to e l i c i t common features of i n s t i t u t i o n a l i z a t i o n amongst e l d e r l y subjects. 42 CHAPTER FOUR THE FINDINGS OF THE STUDY: TRANSITION AS "ADJUSTMENT" • The study sought to i d e n t i f y how e l d e r l y i n d i v i d u a l s perceived t h e i r t r a n s i t i o n from home to i n s t i t u t i o n a l l i v i n g . T r a n s i t i o n was def ined as complete when an i n d i v i d u a l perceived that he or she was l i v i n g l i f e to the extent des i red or pos s ib le wi th in the new s i t u a t i o n . Towards the end of the interviews subjects f e l t that they had achieved what was pos s ib le rather than what was d e s i r a b l e . They explained "you have to make d o . " However, the sub ject s ' accounts suggested that for them the culminat ion of the t r a n s i t i o n was not so much a sense of mastery, but the a b i l i t y to view the r e l o c a t i o n experience and adjustment to i n s t i t u t i o n a l l i v i n g as meaningful w i t h i n the context of each person's t o t a l l i f e . Desc r ip t ion of the Sample The sample consis ted of four women and one man. Ages ranged from 76 - 84 with a mean age of 81.5 years . A l l subjects were of European o r i g i n and the two who had not been born i n Canada a r r i v e d here i n e a r l y adulthood. A l l subjects had been married and except for one woman who married l a te i n l i f e a l l had up to three c h i l d r e n . Three subjects were l i v i n g with a spouse at the time of admission and of these two couples were admitted together . At the time of interv iew one spouse had died and a second had been t rans ferred to a p s y c h i a t r i c u n i t . 43 A l l except one subject were wheelchair bound. Two subjects had d i f f i c u l t y i n hearing and two had speech impediments. The c h a r a c t e r i s t i c s of the sample are presented i n Figure 1. The Tra n s i t i o n This chapter describes a conceptualization of the t r a n s i t i o n to i n s t i t u t i o n a l l i v i n g experienced by a small group of e l d e r l y people, and the data from which i t was derived. The ce n t r a l process of the t r a n s i t i o n was repeatedly referred to by the subjects as "adjustment." Data suggested that t h i s "adjustment" was achieved p r i m a r i l y through problem-solving s t r a t e g i e s . These were dire c t e d towards maintaining personal control over each i n d i v i d u a l ' s l i f e , and ult i m a t e l y over the way i n which each person was to define the t r a n s i t i o n as meaningful i n his or her l i f e as a whole. Subjects had varying degrees of capacity to co n t r o l the environment. I f , and as, these capacities decreased, i n d i v i d u a l s reported that they substituted a c t i v i t i e s f o r those they could no longer maintain. They saw t h i s s u b s t i t u t i o n , and the problem sol v i n g and emotional acceptance t h i s involved, as necessary. At the same time they assumed personal r e s p o n s i b i l i t y f o r i t and a l l other aspects of what they saw as t h e i r adjustment. During t r a n s i t i o n , subjects feared a decline i n cognitive a b i l i t i e s . They monitored personal behaviour c l o s e l y , noting Figure 1. C h a r a c t e r i s t i c s of the sample. Resident Age Sex M a r i t a l Status On admission 1 year l a t e r Degree of Dependency Smoker Non-smoker : A 79 F Married Spouse l i v i n g at home Married Spouse l i v i n g at home Wheelchair bound Ass i s t ed t rans fer F u l l f o re - l imb movement Speech impediment Non-smoker B 84 M Married Admitted with spouse Married Spouse separated to p s y c h i a t r i c u n i t Wheelchair bound F u l l t r ans fe r Limited arm, hand movement Hearing impediment Smoker C 84 F Widowed Widowed Wheelchair bound F u l l t r ans fe r F u l l f o re - l imb movement Hearing impediment Smoker D 76 F Widowed Widowed Wheelchair bound F u l l t r ans fe r Movement i n one hand Speech impediment Smoker E 84 F Married Admitted with spouse Widowed Ass i s t ed ambulation Wheelchair use Independent t rans fer F u l l fo re- l imb movement Smoker 45 incidents of loss of memory, and made e f f o r t s to maintain sensory stimulation through contact with the outside world. Throughout the interviews subjects gave numerous accounts of past l i f e and re l a t i o n s h i p s with family and generations preceding and succeeding t h e i r own. I t was i n f e r r e d from the data that these accounts r e f l e c t e d the subjects' need to maintain personal i d e n t i t y and self-esteem, and to see themselves as having led meaningful l i v e s , within the context of family and s o c i a l h i s t o r y , and despite changing circumstances. The experience of t r a n s i t i o n to i n s t i t u t i o n a l l i v i n g i s described i n f i v e sequential and i n t e r r e l a t e d phases, each characterized by: 1. An adaptive task. During t r a n s i t i o n subjects adapted to both personal and environmental changes, and the achievement of a c e n t r a l adaptive task was the focus of each phase. The achievement of t h i s task was necessary to the subjects' maintaining some degree of control over day-to-day a c t i v i t y and thus working towards i n t e g r a t i o n despite often increasing d i s a b i l i t y and l i m i t a t i o n s . 2. A process which defines each phase and i s the process through which each adaptive task i s achieved. 3. Dimensions of behaviour which are t y p i c a l of, and predominant i n each phase. These include responses to the s i t u a t i o n and s p e c i f i c behaviours which contribute to the process of each phase. 46 4. A l e v e l of personal c o n t r o l which was gained through the achievement of an adaptive task . The phases of the t r a n s i t i o n to i n s t i t u t i o n a l l i v i n g are summarized i n Figure 2. They are : 1. A n t i c i p a t i o n . The adaptive task of t h i s phase was achieved i n the sub ject s ' acknowledgement of personal l i m i t a t i o n s , a need for i n s t i t u t i o n a l i z a t i o n , and preparat ion for that i n s t i t u t i o n a l i z a t i o n . Subjects suggested that at t h i s time they maintained a high degree of c o n t r o l over both the choice of a new home and dec i s ions regarding the home they were l e a v i n g . 2. Reac t ion . Subjects had few expectations of what l i f e would be l i k e i n the extended care u n i t . This lack of expectat ion may have exacerbated the reac t ion but subjects were shocked by t h e i r f i r s t experiences of i n s t i t u t i o n a l l i v i n g . Shock was followed by a pervas ive f e e l i n g of d i s c o n t i n u i t y and subjects reported that they found themselves f e e l i n g lone ly and he lp le s s i n t h e i r new s i t u a t i o n s . At t h i s time they appeared to face a p o t e n t i a l loss of c o n t r o l over t h e i r l i v e s . The c e n t r a l task i n t h i s phase—confronting the s i t u a t i o n , or as subjects descr ibed i t " f ac ing up to i t " — i n v o l v e d experiencing and d e f i n i n g the impact of the environment on onese l f . 3. I n t e r p r e t a t i o n . To be able to c o n t r o l requires an a b i l i t y to p r e d i c t . For the subjects i n t h i s study c o n t r o l assumed an understanding of a c t i v i t y and r e l a t i o n s h i p s wi th in the u n i t . In t h i s phase the task was defined as developing a coherent perspect ive and understanding of the environment, and Figure 2. The c h a r a c t e r i s t i c s of the t r a n s i t i o n to i n s t i t u t i o n a l l i v i n g Phases of T r a n s i t i o n A n t i c i p a t i o n Reaction Interpre ta t ion Negot ia t ion Integrat ion ADAPTIVE TASK Acknowledging personal l i m i t a t i o n s and the need fo r a s s i s t ance . Confronting the s i t u a t i o n . Developing a coherent perspect ive and unde rs tand i ng of the environment. Developing a l t e r n a t i v e sources of need s a t i s f a c t i o n . Incorporat ing i n s t i t u t i o n a l i z a t i o n i n t o l i f e h i s t o r y . DIMENSIONS OF THE TASK Acknowledgement Preparat ion Shock Dis cont inui ty Loneliness Helplessness Interpreta t ion Role c l a r i f i c a t i o n . Developing coping s t r a t e g i e s . Assuming r e s p o n s i b i l i t y fo r personal adjustment. Mainta in ing s e l f -esteem. Mainta ining c o n t i n u i t y . DEGREE OF CONTROL In cont ro l P o t e n t i a l fo r loss of c o n t r o l . Developing a basis for p r e d i c t i o n and c o n t r o l . C o n t r o l through assuming r e s p o n s i b i l i t y desp i te l i m i t a t i o n s . C o n t r o l of s e l f -p e r c e p t i o n . 48 personal p o t e n t i a l within i t . This i n turn provided subjects with a basis f o r p r e d i c t i o n and c o n t r o l . 4. Negotiation. This phase was characterized by the subjects' e f f o r t s to define a l t e r n a t i v e sources of personal need s a t i s f a c t i o n within the environment. In response to the personal changes they experienced, they developed t h e i r a b i l i t i e s to c o n t r o l d a i l y a c t i v i t y to t h e i r f u l l e s t p o t e n t i a l within the environmental structure as they perceived i t , taking i n t o account the support a v a i l a b l e to them. Despite the uncertainty of decreasing p h y s i c a l a b i l i t i e s , subjects assumed personal r e s p o n s i b i l i t y f o r t h e i r adjustment. 5. Integration. This involved not so much the i n t e g r a t i o n of an i n d i v i d u a l within an environment but the i n t e g r a t i o n of the t r a n s i t i o n i n t o the context of a meaningful l i f e . The adaptive task i n t h i s phase was determined as incorporating i n s t i t u t i o n a l i z a t i o n i n t o a l i f e h i s t o r y . I t required that subjects were able to maintain personal i d e n t i t y and self-esteem and see t h e i r l i v e s as continuous and meaningful despite the d i s c o n t i n u i t y they experienced. A n t i c i p a t i o n This phase began with the subjects' r e a l i z a t i o n of the need fo r i n s t i t u t i o n a l i z a t i o n and ended with admission to an extended care u n i t . For a l l subjects i n the sample p h y s i c a l health and stamina had declined, f i n a n c i a l income had a c t u a l l y or r e l a t i v e l y decreased, and s o c i a l support had decreased or become harder to 49 access . During th i s phase subjects acknowledged t h e i r personal l i m i t a t i o n s and the fac t that they were no longer able to continue l i v i n g as be fore . The extent to which each one was able to c o n t r o l the process leading to admission was determined by the sub ject s ' p h y s i c a l resources a t the t ime, and the support and as s i s tance that r e l a t i v e s p rov ided . The descr ip t ions of the events leading to i n s t i t u t i o n a l i z a t i o n were character ized by the subject s ' perceptions of t h e i r acceptance of the need for i n s t i t u t i o n a l i z a t i o n , t h e i r lack of expectations and t h e i r personal c o n t r o l over the events leading to admiss ion. Acknowledgement For each person a d e t e r i o r a t i o n i n personal p h y s i c a l hea l th or the hea l th of a spouse had p r e c i p i t a t e d what the subject accepted as a necessary i n s t i t u t i o n a l i z a t i o n . In each case however, an associated f ac tor meant that resources which may have compensated for admission were not a v a i l a b l e . At the time of admission three subjects had been l i v i n g with t h e i r spouse. In two of these f ami l i e s the r e l a t i o n s h i p and support were so p o s i t i v e l y r e c i p r o c a l that i l l n e s s i n one partner meant that spouses were admitted together . One s tory was t y p i c a l . The subject had been p h y s i c a l l y dependent fo r some time but had worked with h i s wife to maintain t h e i r household: As a matter of f a c t my wife was looking a f t e r me. I never looked a f t e r h e r . My wife was a l r i g h t up u n t i l the time I had pern ic ious anemia and that seems to upset her so 50 much that she—at leas t I d o n ' t know i f that was i t or not , but a f te r that she s tar ted to have Alzheimer ' s d i sea se . We c o u l d n ' t see i t , but a f te r a l i t t l e while we began to see that she was not normal. As a matter of f ac t she was qu i te able to look a f te r the house and look a f te r me for a long time a f te r t h a t . I t must have been a couple of years before she r e a l l y got so that she c o u l d n ' t do the housework. She l i k e d doing i t of course . I was r e t i r e d and I was s t i l l able to do the gardening you see, and we both more or less got in to the h o s p i t a l the same t ime. Subjects be l ieved that t h e i r i n s t i t u t i o n a l i z a t i o n was necessary e i t h e r because a c r i s i s had occurred and t h e i r resources were inadequate, or to avoid a c r i s i s . Whereas one subject had seen that her care was causing her husband increa s ing s t ress and a n t i c i p a t e d a c r i s i s , another experienced such a s i t u a t i o n : I had to s ign myself because I c o u l d n ' t have him [my husband] t i e d to me as he lp le s s as I was. I j u s t wouldn't put him through looking a f te r me day and n i g h t . I wouldn't have anyone do t h a t . * * * My husband was s i ck and I was looking a f t e r him and they kept warning me i f I d i d n ' t get some res t I would have a s t r o k e . W e l l , I d i d n ' t know what they meant. I t d i d n ' t mean a th ing to me and eventua l ly I d i d have a s t r o k e . F i n a n c i a l resources may have provided an a l t e r n a t i v e to i n s t i t u t i o n a l i z a t i o n but for the people i n t h i s sample these were inadequate. One couple l i v e d i n an apartment which was too smal l to accommodate a wheelcha i r . The subject reported, "We had the t o i l e t with arms. We had bought them at ( X ), and we have 51 a bathtub with a metal hook, but the bathroom i n the apartment was s m a l l . I c o u l d n ' t manage i t . " Subjects reported that decreasing independence has re l a ted f i n a n c i a l i m p l i c a t i o n s . For one subject these were extreme. She had l i v e d independently i n a p r i v a t e personal care s i t u a t i o n : I knew when I broke t h i s arm. Then I became incont inent and I had to have aides around the c lock because that was one of the r u l e s . So then I knew I had to go somewhere cheaper. You know you j u s t c a n ' t go on fo rever . Just m u l t i p l y $3,800 x 12 x years and I'm only 76 and my mother l i v e d to 93-94. When faced with the d e c i s i o n to move i n t o an extended care u n i t , subjects had approached i n s t i t u t i o n a l i z a t i o n i n a matter of f ac t way. One sa id s imply "For me i t was impossible to stay at home—when I got—I had no ba lance . I wasn't ge t t ing any b e t t e r . " Whether i t was because of the time lapse, because as a group they "know t h a t ' s l i f e " or because i t was d i f f i c u l t for them to envisage l i f e i n an i n s t i t u t i o n , no one r e c a l l e d that they had any expectations of what they would exper ience . They d i d not seem to have ta lked to anyone about what they could or d i d a n t i c i p a t e . They were not sure that f r i ends could have been h e l p f u l or that any p a r t i c u l a r experience could make a d i f f e r e n c e . One subject t a l k i n g about the meaning an extended care u n i t had for people outs ide sa id "I don ' t think i t has any. They have no i d e a , no idea at a l l . I t ' s a good th ing they d o n ' t . " Another 52 admitted, "Before I had no idea there was anything l i k e t h i s . I had never been i n a h o s p i t a l where they had th i s k ind of o p e r a t i o n . " Even looking a f te r a family member who was c h r o n i c a l l y or c r i t i c a l l y i l l , which a l l subjects had done, d id not prepare them for i n s t i t u t i o n a l i z a t i o n because as one person explained "they never had to go through t h i s , we had them at home. I mean we never thought of pu t t ing them i n , of course, there wasn't i n s t i t u t i o n s . But I d o n ' t think we would have ever done." Preparat ion With the sub ject s ' r ecogn i t ion of the need for i n s t i t u t i o n a l i z a t i o n e i t h e r the subject or a r e l a t i v e i n co-operat ion with the subject set about to organize t h i s . Because p h y s i c a l d i s a b i l i t y was the major f ac tor i n each case phys ic ians were a lready involved and they made r e f e r r a l s for assessment. S e l e c t i o n Once assessment was complete and a need e s t ab l i shed , the subjects ' r o l e i n the preparat ion for admission involved d e c i s i o n making re l a ted to the s e l e c t i o n of an i n s t i t u t i o n and how property was to be d i s t r i b u t e d amongst fami ly members. Subjects v i s i t e d or had someone v i s i t f a c i l i t i e s and then made a choice as to where they would app ly . A v a r i e t y of f ac tors inf luenced t h i s d e c i s i o n but subjects considered f i v e factors i n common: 1. Finance had contributed to the reasons for i n s t i t u t i o n a l i z a t i o n and was n e c e s s a r i l y reconsidered. Thus a p u b l i c f a c i l i t y which could be paid for out of u n i v e r s a l pension funds was necessary or p a r t i c u l a r l y a t t r a c t i v e . 2. Location proved important e i t h e r because subjects wanted to remain i n the area where they l i v e d , or wished to be nearer to close family i n order to ensure or l i m i t the burden of v i s i t i n g . 3. Each subject perceived that they needed continuing medical care and saw t h i s as an important factor to consider. 4. A l l but one of the subjects smoked. This was considered i n s e l e c t i o n and one person reported " t h i s was the best of the three that allowed smoking i n c e r t a i n places, so I chose i t . " 5. The u n i t environment was considered and subjects remembered that they or t h e i r r e l a t i v e s had noted the spaciousness of the u n i t they chose. Subjects reported that they had f e l t comfortable with the decision they made. One described the s e l e c t i o n process s u c c i n c t l y . "They went and looked and [we] decided t h i s was the best place anyway. Anyway i t ' s where I wanted to be." Once the choice of f a c i l i t y was made, each person faced the uncertainty of not knowing when admission would occur. Although a l l subjects were placed q u i c k l y they reported a period of 54 i n s e c u r i t y u n t i l a placement became a v a i l a b l e . One subject described a sequence of events: F i r s t of a l l my name I put my name to be transferred and they said f i r s t of a l l that i t was a long way down the l i s t and then they—suddenly I became fourth on the l i s t . A l i t t l e while afterwards they said they'd trans f e r me i n a week and then the day a f t e r they transferred me. That f a s t . As one woman saw i t , there was a possible explanation. "You don't book, you ask. If you can get close, they take you in t o consideration, but you have to wait your turn. I suppose they have a waiting l i s t . " That subject seemed to suggest, and from the accounts i t also appeared, that having perceived that they were i n control of the process of i n s t i t u t i o n a l i z a t i o n up to t h i s point, subjects f e l t less confident once the admission procedure was i n i t i a t e d . Knowledge of procedure, what was happening, and what they could expect apparently decreased. D i s t r i b u t i o n of Property For the two subjects who were leaving t h e i r own homes, the burden of s e l l i n g a house and d i s t r i b u t i n g property f e l l to r e l a t i v e s . However, the decision as to how t h i s was to be done was made i n cooperation with the subject. Subjects reported t h e i r s a t i s f a c t i o n : My daughter sold i t f o r me. She looked a f t e r a l l that for me. She d i d i t through the hands of the ... you know. We sold i t f o r almost as much as we asked f o r i t . We got a very good d e a l . I put quite a b i t of money in t o my daughter's new house. I paid the down payment f o r her.' That's a s a t i s f a c t o r y thing. I had to give up. 55 * * * My daughter has my p iano . I miss i t but t h a t ' s good because she enjoys i t and I can go and see i t , and p lay i t perhaps, i f I want. Reaction The second phase began with admiss ion. I t involved the subjects i n confront ing t h e i r own fee l ings and the d e f i n i t i o n of l i m i t a t i o n s — both t h e i r own p h y s i c a l l i m i t a t i o n s and the l i m i t a t i o n s of the environment i n which they l i v e d . I t was character ized p r i m a r i l y by shock fol lowed by a f e e l i n g of d i s c o n t i n u i t y that was pervasive throughout t h e i r l i v e s . D i s c o n t i n u i t y arose i n t h e i r geographical r e l o c a t i o n , the change from home to i n s t i t u t i o n a l l i v i n g and the associated d i s r u p t i o n i n ro le s and r e l a t i o n s h i p s . I t introduced fee l ings of l one l ines s and helplessness and dur ing th i s phase subjects appeared to express t h e i r p o t e n t i a l f o r l o s i n g c o n t r o l of t h e i r s i t u a t i o n . Shock For a l l subjects f i r s t impressions were negat ive . One person who had p r e v i o u s l y v i s i t e d the f a c i l i t y reported that she was " h o r r i f i e d . " Only one subject r e c a l l e d the day of admission and when asked, others were vague about the events that occurred . The experience seemed common to a l l sub jec t s . "Nothing reg i s t e r s u n t i l you've been here a whi l e , you d o n ' t know what's happening. A l l I could think of was going home and there was no home to go t o . " 56 Six months a f te r admission a l l subjects at times dur ing interv iew evidenced the anxiety they had f e l t fo l lowing t h e i r admiss ion. They s a id things l i k e "I c a n ' t t a lk about i t , " changed the subject , or c losed the in terv iew with "I think t h a t ' s a l l you want to know." One woman who had i n i t i a t e d and organized her i n s t i t u t i o n a l i z a t i o n out of concern for her husband allowed her f ee l ings to become c l ea r when she s a i d , " A l l I hope i s that my husband never, never has to come to t h i s sor t of t h i n g . I t would k i l l him, I'm s u r e . " D i s c o n t i n u i t y : Features and E f f e c t s . Feel ings of shock apparently decreased as subjects became more aware of t h e i r environment. However, the second dimension i n the reac t ion phase was the pervas ive experience of d i s c o n t i n u i t y i n a l l aspects of t h e i r l i v e s and t h i s contr ibuted to f ee l ings of lone l ines s and he lp le s snes s . Subjects had genera l ly chosen a f a c i l i t y c lose to t h e i r previous home. One person who had moved from V i c t o r i a to Vancouver reported " f e e l i n g l o s t " i n a c i t y she d i d n ' t know, even though she r a r e l y l e f t the extended care u n i t . She expla ined , "I t a l k to one woman. She always l i v e d i n Vancouver, she can exp la in t h i n g s . I d o n ' t know anyth ing . I 've never l i v e d h e r e . " This d i s c o n t i n u i t y , f e e l i n g "out of i t , " was not experienced as s t rong ly by those who had p r e v i o u s l y l i v e d i n the a r e a . They f e l t more comfortable and were able to c l e a r l y 57 v i s u a l i z e the area outs ide the u n i t . They made reference to s p e c i f i c loca t ions t y p i f i e d by statements such as: We l i v e d i n A . most of the t ime, or i n that a r e a . We were i n s evera l d i f f e r e n t areas . We l i v e d at B. Road f i r s t of a l l . When I had my son we were l i v i n g at B. Road and then we went over to C . and then we went from there to D. For those who had l i v e d i n the area there were other advantages. I have a f r i e n d who comes once a month (and I belong to the Masons) and he comes from the Lodge, and there are two fel lows t h a t — I belong to the Legion and a couple of fe l lows come from the Leg ion . I get qu i te a l o t of v i s i t o r s . I have a v i s i t o r that comes from the U n i v e r s i t y —comes on Saturdays and there are a l l kinds of—my rec to r comes i n to see me about once a month and then there i s one person that comes i n to see me. W e l l , I have qu i te a l o t of v i s i t o r s . D i s c o n t i n u i t y i n Rela t ionships Contemporaries age together . Relocat ion had p h y s i c a l l y separated the subjects from f r iends and r e l a t i v e s , but a t the same time i n d i v i d u a l s i n the sample reported that aging and i t s e f fec t s or concomitants were a major contr ibutory f ac tor i n t h e i r i s o l a t i o n . A subject whose wife was i n s t i t u t i o n a l i z e d i n another f a c i l i t y recounted "I miss her because I haven't—and I c a n ' t go down and see h e r . You see, I used to go every day. Even though I c o u l d n ' t t a lk to her , I used to s i t beside h e r . " Another subject expla ined : As you get o l d e r , they ' re [ fr iends] not able to v i s i t you too o f t e n . They drop away. You c a n ' t en te r t a in as you get older—no use worry ing . I c a n ' t do—nothing I can do 58 about i t . I f you d o n ' t en ter ta in they drop you and a l so t h e y ' r e ge t t ing o l d e r . Some are o lder than I am. Some are younger. But they ' re not that young, a l l i n t h e i r 70's and 8 0 ' s . People outs ide are ge t t ing o ld and some of them a r e n ' t w e l l and they can ' t come. I c a n ' t go to them. They change and I guess you change. D i s c o n t i n u i t y i n Environment Relocat ion had p h y s i c a l l y separated subjects from t h e i r homes, f r iends and f a m i l i e s . Yet d i s c o n t i n u i t y was a l so introduced because the environment i n which they found themselves was very d i s s i m i l a r from that they had known before . The environmental features which had the most impact on the subjects at admission were a l so those they found most d i f f i c u l t at the time of i n t e r v i e w . The length at which i n d i v i d u a l s r e i t e r a t e d the d i f f i c u l t i e s they experienced and the assoc ia ted s t ress these caused may have r e f l e c t e d the f r u s t r a t i o n subjects f e l t because the most s t r e s s f u l environmental features were a l so those over which they were u n l i k e l y to gain any c o n t r o l . A l l subjects introduced no i se , w a i t i n g , and food as the most d i f f i c u l t features with which they had to cope. The subject s ' d e f i n i t i o n s of these features and t h e i r e f fect s were s p e c i f i c : The noise i s an awful ly bad fea ture , e s p e c i a l l y at meals. People come i n t o the d i n i n g room y e l l i n g and hooting a l l the time they are t h e r e . Near ly dr ives people out of t h e i r minds you know. I t ' s a p p a l l i n g , abso lu te ly a p p a l l i n g . You f e e l l i k e screaming "Shut up fo r goodness sake, shut u p . " But they c a n ' t shut up and they make such awful noises that sometimes you jump out of your s k i n . I think i t has a bad e f f ec t on people ' s h e a l t h . * * * 59 Everything [that] has to be done you have to wait f o r . Food i s supposed to be here at a c e r t a i n time, i t doesn ' t come f o r 15-20 minutes a f t e r that and then i t i s not d i s t r i b u t e d r i g h t away. They keep you wai t ing for h a l f an hour, for one reason or o ther . For ins tance , they say you have to be ready fo r breakfast at 9 o ' c l o c k . Wel l you d o n ' t get your breakfast u n t i l 9 :30. Of course they have a l o t of people to assemble I know but what i s the use of t e l l i n g the other people to come i n and then—. * * * Then the food. That was very h a r d . I was used to lo t s of salads and fresh f r u i t and vegetables . Here i t i s very d i f f e r e n t . I know they have to economize. I can understand t h a t . I 've had to economize myself often enough. But—and then having to eat i n that large room. W e l l . D i s c o n t i n u i t y i n A c t i v i t i e s A decrease i n p h y s i c a l capaci ty and other features introduced with r e l o c a t i o n , combined with the i n s t i t u t i o n a l schedul ing of a c t i v i t y to require a t o t a l reorganiza t ion of each i n d i v i d u a l ' s d a i l y l i f e . The a c t i v i t i e s they gr ieved for most were those they had taken for granted throughout t h e i r l i v e s . Because the environment d i d not provide a context fo r cont inuing these, subjects f e l t that they could not r e l a t e to t h e i r p r e - r e l o c a t i o n l i f e . One subject descr ibed how i t f e l t : You've got a home, haven' t you? W e l l , what would you do i f you were suddenly thrust i n t o a hosp i ta l ? You d o n ' t know what you'd do . You can ' t t h i n k . You can ' t p l a n . You c a n ' t say w e l l , I ' l l do so-and-so tomorrow. I ' l l go down and clean the cupboards. I ' l l do t h i s and I ' l l wash the windows, or something l i k e t h a t . You c a n ' t do anything l i k e that anymore and you miss i t . Of course you do . And you c a n ' t say to y o u r s e l f , I ' l l make a batch of cookies or a few mince pies or something l i k e t h a t . You c a n ' t do any of those things any more. I t j u s t seems i n c r e d i b l e but 60 that i s the thing i n h o s p i t a l that you miss most. Not being able to do any of the things you are used to doing. So there i s nothing you can do about i t , unless you get wel l enough to do some of the things around the h o s p i t a l . The a b i l i t y to be instrumental i n the choice and execution of any a c t i v i t y was dependent upon an a b i l i t y to plan and a f e e l i n g of ownership or at le a s t "a r i g h t to." Another report h i g h l i g h t s how subjects wished to be proactive rather than reactive within t h e i r new environment. I should be able to plan and do things and I can't get out and do things f o r myself, I'm stuck i n s i d e . I can't get out and work i n the garden. I t ' s not my garden. They t e l l me you can get out and do things there but i t ' s somebody else's place, you know what I mean. When you have had a place of your own and you have been used to looking a f t e r i t and keeping things going, why i t ' s d i f f e r e n t . This subject noted on several occasions that she kept her gardening gloves i n her bedside table and other subjects reported that they had with them, or had access to t h e i r tools or materials which would enable them to return to a favourite occupation i f ever i t became possible again. Ultimately subjects f e l t f r u s t r a t e d and at times f e l t t h e i r loss was almost overwhelming: I cannot do any of the things I used to do. I cannot do them. I cannot even think about them. I can't bear i t sometimes. You can't do th i s and you can't do that and you can't do the other, you are stymied, aren't you? When you have been busy a l l your l i f e and r e a l l y done things s t e a d i l y a l l of your l i f e then you are stymied. Why i t ' s a h o r r i b l e f e e l i n g . For some the c e n t r a l loss seemed to be loss of productive a c t i v i t y , f o r others i t was a fundamental s k i l l . One woman 6 1 s a i d , "I think of the things that I have done i n the past and don't have now, oh yes, you do. I love walking, now I can't walk." The subjects' f e e l i n g s that they were unable to continue l i f e as before were c l o s e l y associated with f e e l i n g that they d i d not belong, and attempts to r e l i e v e these f e e l i n g s by a c t i v i t y at whatever l e v e l p o s s i b l e . One person explained, "No, I don't belong here. I don't belong anywhere. That's the trouble, I don't belong anywhere. So I t r y to push myself as much as I can i n here so that I get the f e e l i n g as i f at l e a s t I belong somewhere." Loneliness The overwhelming e f f e c t of the d i s c o n t i n u i t y i n the l i v e s of the subjects was l o n e l i n e s s . A l l subjects i n the sample introduced and talked about how lonely they were. Only one person established a r e l a t i o n s h i p with another resident and t h i s occurred at le a s t s i x months a f t e r her admission. The d i f f i c u l t y i n e s t a b l i s h i n g new re l a t i o n s h i p s within the un i t was a t t r i b u t e d to the f a c t that subjects f e l t that there was no one with whom they could t a l k . One person recounting her f i r s t impressions sai d , The worst thing was the f a c t that there were so many— how can I put i t n i c e l y , non people i n the dining room. I mean when you look around and you see a l l t h o s e — s o r t of death heads who can't communicate, that i s a shock. 62 Others r e i t e r a t e d : There i s nobody that I can talk t o . I've t r i e d to ta l k to people, but they are ei t h e r deaf and can't hear me, or they can't t a l k . * * * No there's no one you can have a prolonged conversation with. I go down to the beergarden whenever they have i t , mainly to get a change of short conversation but i t ' s not very d i f f e r e n t from up here. You can't talk to them at a l l . Some you can't make any sense at a l l out of them. Apart from the f a c t that others couldn't communicate, some subjects were ambivalent about e s t a b l i s h i n g r e l a t i o n s h i p s . One subject i n r e f e r r i n g to making friends r e f l e c t e d her f e e l i n g s and ambivalence: Not with any of the inmates I haven't. It's j u s t — w e l l I don't know how to say i t , but everybody's got t h e i r own type of people haven't they? You j u s t can't go and say h e l l o to some here. But they are n i c e — n o I don't want to mix. I ' l l t a l k to them and say h e l l o . They're a l l strangers to me. I recognize them but I don't get f r i e n d l y with them. I always j u s t say h i and go again. For the one man i n the sample i t appeared p a r t i c u l a r l y d i f f i c u l t . He missed h i s wife t e r r i b l y , he was s l i g h t l y deaf, and the one man with whom he may have talked was admitted only f o r a short time and was looking forward to discharge. He reported: I'm pretty lonely here. I haven't been able t o — I can ta l k to the chap next to me, but his wife comes i n and talks to him every day, and so I can't r e a l l y . Think I s h o u l d — f r i e n d l y . I ta l k to him b u t — . The s t a f f were not seen as people to talk t o . The subjects were unanimous that "They are f a r too busy, apart from the day-to-day work and orders they haven't got time to t a l k . They are f a r too busy." One person who appeared to have communicated some of her d i f f i c u l t i e s to a nurse, i n response to the question "So you are able to t a l k to the nurses about what i t i s l i k e to be here, and * what i t f e e l s l i k e ? " r e p l i e d "Oh no, I—we never discuss i t . They don't t a l k about i t and I don't." Helplessness Discontinuity also entailed dealing with s i t u a t i o n s subjects had not experienced before. In t h e i r new s i t u a t i o n subjects found that there were many things that were unexpected. Subjects reported that they f e l t helpless not so much because they f e l t c o n trolled by others but because they were p h y s i c a l l y unable to impact upon the environment as they wished. Because they were unsure of the environment, could not p r e d i c t the behavior of other residents, and wondered i f they appeared to other people as some residents appeared to them, they often f e l t frightened and vulnerable. These f e e l i n g s more often occurred e a r l y i n the subjects' i n s t i t u t i o n a l i z a t i o n , and as time went on tended to be replaced by feel i n g s of annoyance. They us u a l l y arose from the behavior of other residents rather than personal changes they were experiencing. Minor incidents such as "grabbing," or more d i f f i c u l t f o r the subjects, the s i t u a t i o n s i n which personal privacy was not 64 respected, were r e l a t i v e l y f requent . However, i n each report the subject r a t i o n a l i z e d the behavior that had p r e c i p i t a t e d h i s or her response. One subject r e c a l l e d : This man came behind me t h i s morning, I d i d n ' t know he was there and he put h i s hand on my back and I, "Ohhhhhhhh!" W e l l , i t shouldn ' t have s t a r t l e d me anyway. But i t d i d . But I c a n ' t help i t . Apparently equa l ly d i f f i c u l t was the constancy of the annoying behav ior . As one woman r e c a l l e d : When a person i n a wheelchair comes i n t o your room, and you 're the only one, and you d o n ' t even know they ' re there , not i n the middle , not i n the way, and d e l i b e r a t e l y runs t h e i r cha i r i n the back of your cha i r and you 're reading i t ' s very annoying. She l i k e s a t t en t ion and to get a t t e n t i o n she does t h a t . I j u s t maybe f e e l that way but , she does i t a f a i r b i t , but you c a n ' t go away. Subjects however, r a t i o n a l i z e d and f e l t they had to learn to accept the behavior of o ther s . Feel ings of helplessness arose more from the f ac t that i n d i v i d u a l s could not he lp themselves and had to depend on s t a f f . They sa id things such as: " I ' v e always been a c t i v e and I never thought I ' d f e e l he lp le s s l i k e t h i s , " and "You have to worry someone else to get i t , and there ' s nothing you can do about i t , " and reported inc ident s where t h e i r helplessness was very apparent: There should be, you know. I—the chap next to me had a —he was choking, breathing awful ly h e a v i l y and I was the only one i n the room that was aware of t h i s f ac t because nobody e l se knew and so I put the l i g h t on and I got them i n there . And another time somebody f e l l down at the foot of my bed—I put the warning l i g h t on and nobody came so then I managed to—there ' s an emergency l i g h t there and by us ing a box of t i s sues I was able to press t h i s and get them—emergency l i g h t — t h e r e and they d i d n ' t come r i g h t away a t tha t , e i t h e r . For tunate ly—I thought the f e l low 65 might have broken h i s leg or arm or something. * * * I t was f r i g h t e n i n g not being able to get someone and once or twice that n ice l i t t l e lady over there who i s b l i n d would walk down the h a l l for me with the walker u n t i l she found someone and—I mean she's amazing. I think she's amazing. I could do noth ing . At times however, the f e e l i n g of helplessness was almost overwhelming and i t seemed to be most acute when subjects r e f l e c t e d on t h e i r s i t u a t i o n , e s p e c i a l l y i n comparison with the pa s t . One person summed up: I d o n ' t know. I r e a l l y don ' t know. When you 're s i ck i n a wheelchair and you 're p r e t t y h e l p l e s s , you r e a l i z e that people who drop dead of heart f a i l u r e — t h e y ' r e lucky . The people who drag on are the unfortunate ones. You can l i v e too long . Despite the s trength of t h e i r f ee l ings subjects attempted to dea l with the s i t u a t i o n on the same bas is that they had apparently dea l t with t h e i r l i f e . They were pragmatic, accept ing , and saw i t as t h e i r r e s p o n s i b i l i t y to adjust to t h i s as they had to a l l d i f f i c u l t s i t u a t i o n s . They agreed tha t : "These things happen." " W e l l what's the use of f r i g h t , i t ' s j u s t there . You j u s t have t o — . " "There ' s no o ther . You know that there i s no out . You know you have to (get used to i t ) . " "There i s no use complaining. I t ' s no good, other people d o n ' t want to l i s t e n to i t , they 've enough of t h e i r own." In terpre ta t ion The t h i r d phase i s i n t e r p r e t a t i o n , with the task of 66 developing a coherent p i c t u r e and understanding of the environment. I t i s characterized by the subjects' attempts to explain the environment and a c t i v i t y within i t i n personally meaningful terms. Once subjects were aware of environmental features they attempted to develop a comprehensive and coherent explanation of the re l a t i o n s h i p s and a c t i v i t i e s and the role that they could play within the u n i t . These descriptions appeared to be based on a conscious e f f o r t to be objective and yet at the same time be accepting of others. They ulti m a t e l y developed a concept of the environment which p o t e n t i a l l y enabled p r e d i c t i o n , and thus the a b i l i t y to negotiate and co n t r o l personal day-to-day a c t i v i t y . Explaining A c t i v i t y Within the Unit As a group, subjects appeared to have l i t t l e knowledge about how and by whom day-to-day a c t i v i t i e s i n the un i t were organized. They recognized that they had been t o l d , on or before admission, that f a c i l i t i e s and a c t i v i t i e s were a v a i l a b l e to them but they had eit h e r not been t o l d , or had forgotten d e t a i l s of how to access some of the opportunities they a n t i c i p a t e d . They were also vague as to s t a f f roles and did not seem to know or have the confidence to ask. One subject reported that she had anticipated playing the piano but said that she hadn't r e a l i z e d that that meant playing i n the main dining room. She didn't f e e l confident to do that 67 because she was not sure of her a b i l i t y s ince her i l l n e s s . She p r a c t i c e d at n ight on her bed sheet and hoped to get out somewhere to t r y aga in . What she d i d n ' t know, hadn' t asked, and what no one had suggested was that there were other pianos i n the b u i l d i n g . Another i l l u s t r a t e d : For ins tance , they say they have—when I came here they t o l d me that they would a l l o t a p iece of land to anyone who wanted to do gardening—do your own gardening. W e l l , I might be able to do that , but I don ' t know how. One subject f e l t , even a f te r 9 months that the environment was s t i l l strange and re l a ted th i s to a lack of o r i e n t a t i o n . I d i d n ' t have any—they d i d n ' t take me around or show me anything . A l l I knew—well I haven ' t r e a l l y been— anything to speak of even y e t . They d o n ' t have time to take me around. At l e a s t , they d o n ' t anyway. No I d i d n ' t see—I l i k e the place a l r i g h t . Because as subjects reported they genera l ly ta lked to s t a f f only to answer questions i f they asked, they watched and attempted to exp la in fo r themselves what went o n . At f i r s t they were able to recognize , or c o u l d n ' t avoid n o t i c i n g , s p e c i f i c features i n the environment. They then attempted to descr ibe a coherent p i c t u r e of the s i t u a t i o n they were i n and used th i s as a basis for d e f i n i n g a l t e r n a t i v e s for themselves wi th in i t . Subjects observed and developed personal perspect ives of the s i t u a t i o n they were i n . I t seemed from t h e i r accounts tha t , as time went by, they became i n c r e a s i n g l y able to descr ibe the environment i n r e l a t i v e l y ob jec t ive terms of r e l a t i o n s h i p s 68 between the s t r u c t u r a l environment, the "system," and the d a i l y a c t i v i t i e s of s t a f f and r e s i d e n t s . At the same time, although subjects may have had some "misunderstandings," they were genera l ly c l ea r i n t h e i r minds about what should be acceptable i n the circumstances . As a group the subjects avoided a t taching blame to i n d i v i d u a l s and genera l ly accorded r e s p o n s i b i l i t y for the short-comings i n the environment to the system beyond the f l o o r . Doing th i s may have been important i n that i t enabled them to r a t i o n a l i z e some of the s t a f f behaviors they found d i f f i c u l t and was more l i k e l y to enable them to f e e l supportive of s t a f f . One subject demonstrated t h i s a b i l i t y to descr ibe the i n t e r r e l a t i o n s h i p s w i t h i n the environment and thus provide a coherent d e s c r i p t i o n of i t . The subject was very dependent and the d i s cus s ion was about w a i t i n g : The f l o o r i s large and there are not people here ( in t h i s area) a l l the t ime. Although they have a f l a sher l i g h t that you can put on, i n our case, anyway we c a n ' t reach that , i t i s out of our reach. I f the c a l l b e l l s were a l t e red so that you could a c t u a l l y use them that would be more h e l p f u l . That would he lp , but i t ' s not l i k e press ing a button and presto someone a r r i v e s . I d o n ' t know whether they can help i t or no t . They apparently forget about them you know. They go down to have t h e i r lunch or dinner or something, or a break and they leave—there s i t t i n g . They have done the same th ing to me. C a n ' t say i t ' s the f a u l t of the employees because they—so many people to look a f t e r . They've twice as many as they had be fore . They used to have four people looking a f t e r us at n i g h t , now they've only got two. 69 This i s what I'm t o l d . If they'd only not t r y to cut out so many of the employees. I understand that sometimes a warning l i g h t i s n ' t very urgent. Of course, I suppose ( i f l i g h t s worked) everybody would use i t . But c e r t a i n l y we have people c a l l i n g out because they've been l e f t s i t t i n g there. They don't get an answer. They l e f t him s i t t i n g on a commode f o r an hour and a h a l f the other night. I was l y i n g i n bed so I know. He hadn't even got a l i g h t . He couldn't do anything about i t and that's not reasonable. This a b i l i t y to consider the environment and i t s r e l a t i o n s h i p s from a v a r i e t y of perspectives appeared to provide subjects with a context i n which they could define what they saw as reasonable expectations and develop strategies conducive to t h e i r gaining mastery within the s i t u a t i o n . Role C l a r i f i c a t i o n C l e a r l y subjects would have appreciated a sense of continuity with t h e i r former a c t i v i t i e s . Having l o s t t h i s they seemed to have no cl e a r idea of p o s s i b i l i t i e s within the s i t u a t i o n . They seemed to be uncertain as to whether they were i n a h o s p i t a l or a home and whether they were to act as they saw patients or residents would ac t . One person l a t e r found a more "experienced" resident who was supportive to her i n f i n d i n g a c t i v i t y with which to f i l l her day, but generally i n d i v i d u a l s developed t h e i r new roles alone. Only one subject ever referred to the extended care u n i t as a home. This occurred when a need for medical therapy was being discussed. The subject sa i d , "They won't take me i n a h o s p i t a l . I've got to be i n a home." Yet a l l subjects having associated t h e i r admission with an acute p h y s i c a l i l l n e s s or having experienced long term medical care for t h e i r d i s a b i l i t y had expected that medical therapy was a v a i l a b l e to them. No one seemed to have been t o l d , to have r e a l i z e d , or accepted that by d e f i n i t i o n they were admitted to the extended care u n i t because they had been c l a s s i f i e d as no longer able to benefit from acute or r e h a b i l i t a t i o n s e r v i c e s . At l e a s t i n the beginning they had hoped, perhaps u n r e a l i s t i c a l l y , f o r some improvement i n p h y s i c a l condition. One sai d , "I hope I could get back to walking and get out." Another selected the unit because of i t s " h o s p i t a l " o r i e n t a t i o n , medical services and u n i v e r s i t y a s s o c i a t i o n . She said , "I knew that i f there were any new treatments I could probably b e n e f i t from them." The subjects had a l l l i v e d independent and s e l f - s u f f i c i e n t l i v e s and appeared to have used t h e i r medical p r a c t i t i o n e r i n a consultant r o l e . One subject expressed her f r u s t r a t i o n at being a "patient." She talked about waiting two weeks to get a physician to examine her aching ear and then "he didn't even look. When I t o l d him he j u s t said my spectacles were too t i g h t . " She was angry and hurt at what she f e l t was his perception of her. "I'm not stupid" she s a i d . Gradually i t became clear to the subjects that medical supervision rather than therapy was a v a i l a b l e but some subjects s t i l l had questions: 7 1 My j o i n t s are not now [s ince admission] near ly as good as they were unfor tunate ly . I d o n ' t have any treatment for my a r t h r i t i s — n o p a r t i c u l a r treatment by anybody. I would l i k e to have some a r t h r i t i s expert or somebody to look a t me and t e l l me what I should do, or whether I need any more treatment. My a r t h r i t i s i s n ' t going to get any bet ter I d o n ' t t h i n k . For the subjects the s t r u c t u r a l environment and other res idents re in forced the h o s p i t a l image. One introduced the d i f f i c u l t i e s she had i n leading as independent a l i f e as p o s s i b l e . She f e l t the f a c i l i t y had been b u i l t as an Acute Care U n i t : You see, what I can gather, t h i s was b u i l t as a h o s p i t a l f o r a d i f f e r e n t type of p a t i e n t a l toge ther . I t ' s awful ly hard to push a wheelchair i n through here and i f there i s another cha i r there why you c a n ' t do i t . D i f f e r e n t from a l l of the people that are here , I th ink , but I do not know. I th ink , myself , i t was probably made f o r , b u i l t for d i f f i c u l t p a t i e n t s , very d i f f i c u l t . I think they switched i t around. Negot ia t ion This fourth phase, termed n e g o t i a t i o n , i s character ized by subjects " f a c i n g up to th ings" and " a d j u s t i n g . " The adaptive task subjects faced i n t h i s phase was to def ine and implement a l t e r n a t i v e sources of personal need s a t i s f a c t i o n . As i n d i v i d u a l s became i n c r e a s i n g l y aware of the s i t u a t i o n they were i n , and able to acknowledge what they were exper iencing , they gained the confidence to def ine and experiment i n t h e i r r e l a t i o n s h i p with the environment. During negot ia t ion with the environment each i n d i v i d u a l was ana lyz ing personal resources and t e s t i n g and formulat ing the 72 extent to which he or she could l i v e l i f e as d e s i r e d . As they d i d th i s each person i n c r e a s i n g l y recognized and accepted the need to take personal r e s p o n s i b i l i t y for personal adjustment w i t h i n the new s i t u a t i o n . Although none of the subjects could r e c a l l or descr ibe a sequence of steps or stages that lead to f e e l i n g comfortable i n the extended care u n i t , the s t ra teg ie s they descr ibed , or that became e x p l i c i t i n t h e i r accounts of t r a n s i t i o n , were s i m i l a r . In a l l cases and i n response to a v a r i e t y of environmental fea tures , the f i n a l outcome was that subjects learned behaviors or a t t i tudes which enabled them to gain mastery i n an i n s t i t u t i o n . However, before they achieved t h i s , i n d i v i d u a l s c o n s i s t e n t l y attempted to change the environment. I t appeared that when they found t h i s impossible they rea l igned t h e i r expectations and behav ior . This often required tremendous personal e f f o r t , or g i v i n g up a c t i v i t i e s which they enjoyed or va lued . As a group subjects approached t h e i r "adjustment" i n a problem s o l v i n g manner. They saw t h i s as cons i s tent with how they had always l i v e d and expected i t of themselves, but they d i d not f i n d i t easy. One subject descr ibed the process s u c c i n c t l y : No, no I accept i t . I mean I—. N a t u r a l l y i t ' s not too pleasant but I mean I know i t ' s l i f e . I can ' t—I have a c e r t a i n philosophy that I go by and that i s I go by the Sereni ty law, prayer , which you know. God grant me s e r e n i t y to accept the things I cannot change, courage to change the things I can and the wisdom to know the d i f f e r e n c e . I t r y to abide by tha t , but I mean—. You c a n ' t give up . No. The subjects' negotiation with the environment was apparent i n two main dimensions: 1. developing coping s t r a t e g i e s , and 2. assuming r e s p o n s i b i l i t y f o r personal adjustment. Developing Coping Strategies Subjects r e c a l l e d the strategies which had enabled them to deal with some of the more d i s t r e s s i n g features of i n s t i t u t i o n a l i z a t i o n and to organize a routine of a c t i v i t y which structured t h e i r day to day l i f e . The coping s t r a t e g i e s which i n d i v i d u a l s used seemed to be determined by what was possible within the constraints of i n d i v i d u a l p h y s i c a l capacity and environmental structure and support. The a b i l i t y to determine and accept l i m i t a t i o n s seemed to a r i s e from previous experiences such as economic depressions and i l l n e s s i n which these behaviors had proved e f f e c t i v e . As one person pointed out: "There were no old age, there were no Canada pensions, no s o c i a l s e c u r i t y , you e i t h e r worked, you know, to eat or I don't know what you d i d . " Although at times subjects a c t i v e l y t r i e d to change the environment they were generally not s u c c e s s f u l . Through a l l phases, st r a t e g i e s which involved processing information, reasoning, and r a t i o n a l i z a t i o n , seemed to be more successful i n a s s i s t i n g an i n d i v i d u a l to adjust within the i n s t i t u t i o n a l environment. 74 Three major strategies used by the subjects became apparent through data a n a l y s i s . They are presented as: 1 . p a r t i c i p a t i n g , 2. c o n t r o l l i n g , 3. l i v i n g "beyond" the i n s t i t u t i o n . The c l a s s i f i c a t i o n represents a succession of a c t i v i t i e s characterized and determined by the subjects' increasing p h y s i c a l dependency, loss of environmental c o n t r o l and an associated a b i l i t y to be or become ps y c h o l o g i c a l l y and emotionally s e l f - r e l i a n t . As dependency increased, subjects had less access to a c t i v i t y , s o c i a l i n t e r a c t i o n , and sensory stimulation. When t h i s occurred subjects attempted to maintain at le a s t some form of sensory stimulation f o r themselves. At the same time subjects i n t h i s sample had a r e l a t i v e l y high degree of continuing i n t e r a c t i o n with at le a s t one close r e l a t i v e . This offered the opportunity to maintain contact with the world beyond the extended care u n i t and also provided stimulation. At the same time i t reinforced f o r the subjects some sense of recognition by and r e l a t i o n s h i p with the world outside. P a r t i c i p a t i n g Subjects d i d not p a r t i c i p a t e i n organized a c t i v i t i e s on the f l o o r . The reasons given f o r avoiding these a c t i v i t i e s were that the i n d i v i d u a l (a) was p h y s i c a l l y incapable of taking part, (b) 75 was not interested i n the a c t i v i t y , or (c) found the a c t i v i t y demeaning. As one person explained: I go to anything that's s p e c i a l , j u s t to show that I'm in t e r e s t e d . Not that I am r e a l l y . Oh, I enjoy i t when children come and put on a s p e c i a l . I enjoy that very much. But, of course I don't go out to t h e i r bowling games or the v o l l e y b a l l attempts because i t ' s so f u t i l e and I can't r e a l l y j o i n i n and s o — . Compared with a previous s i t u a t i o n there seemed to her to be l i t t l e to do: Before I could do gardening. You could always make tea with people who dropped i n and the people there were mostly mobile, and very i n t e r e s t i n g people and so, they had a wonderful recreation d i r e c t o r . Every night and every afternoon there was something you could do. The a c t i v i t i e s subjects were most l i k e l y to take part i n were: 1. A c t i v i t i e s subjects had enjoyed before t h e i r i n s t i t u t i o n a l i z a t i o n . What seemed to be missed most by people i n thi s group was the opportunity to a c t i v e l y l i s t e n to music: Well, I am not interested i n modern music because I don't know anything about i t . What I l i k e i s c l a s s i c a l music mostly. You can't get opportunities to l i s t e n to c l a s s i c a l music. Not that I know o f . They may bring i n a p i a n i s t here. She plays a l o t of modern tunes. Some of them I know, some of them are not modern, some of them are old songs of the f i r s t World War (which are some of the best songs that have ever been written) but don't have any c l a s s i c a l music. At le a s t I haven't heard any. 2. A c t i v i t i e s which allowed subjects to recreate the l i f e they had previously led: Sometimes when X i s baking I can go and help her wash the dishes. And that s o r t of thi n g . Feel as i f I am 76 ge t t i n g a l i t t l e b i t of home l i f e but i t i s only once i n a blue moon. In maintaining a c t i v i t y , the dilemma f or subjects (and s t a f f ) arose i n f i n d i n g some creative, productive or competitive a c t i v i t y which they could i n i t i a t e and carry out alone. This was impossible f o r the p h y s i c a l l y dependent, and others often f e l t they lacked energy or motivation, or they needed encouragement or assistance to perform a c t i v i t i e s such as gardening or baking. One woman explained that she no longer had the energy, patience, or need to k n i t . C o n t r o l l i n g The extent to which i n d i v i d u a l s were able to control t h e i r i n t e r a c t i o n with the environment appeared to r e l a t e d i r e c t l y to a) the degree to which they were independently mobile and b) the effectiveness of t h e i r arm and hand movements. Subjects who were p h y s i c a l l y less able to con t r o l the environment at the same time appeared to be most subject to con t r o l by i t . As the most dependent person i n the sample explained, she was dependent on others to: 1. Schedule her day ("You know from 6, very often I'm i n bed at s i x o'clock, and then i f you're not up u n t i l 9, that's an awful long time.") 2. Help her prepare f o r any a c t i v i t y ("I don't go because i t ' s always so e a r l y i n the afternoon and I am j u s t r e s t i n g i n bed and then by the time I'm dressed you know, they're a l l finished.") 3. A s s i s t with a l l p h y s i c a l functions. ("I've got over that (being frightened of being incontinent) but I never put my l i g h t on u n t i l i t ' s necessary. If only I could p r e d i c t when i t ' s going to be necessary.") Another person attempted to explain that not being able to determine one's own schedule could lead to foregoing a c t i v i t y : " I f I have something i n the afternoon I have to stay up from about 12 o'clock u n t i l 7:30 or 8 o'clock. I have so long i n the wheelchair. I t ' s too long to be s i t t i n g up." With increasing dependency a subject's a b i l i t y to c o n t r o l the environment, e s p e c i a l l y sensory input from the environment, appeared to become more important. Subjects i n the sample avoided common areas because they were often d i s t r e s s e d by noise and the behaviors of other residents. If a subject was not independently mobile and thus could not locate and use other quiet areas, or i f he or she could not s i t up i n the wheelchair for any length of time, i t meant that most of the day was spent i n a bedroom. Subjects reported that as p h y s i c a l dependency increased they often had to forego a c t i v i t i e s such as watching t e l e v i s i o n or l i s t e n i n g to the radio because they needed help to manipulate the equipment. This had f r u s t r a t e d one person who s a i d , 78 There 's just—the a ides , t h a t ' s a l l , i f they happen to be—they have t ime. The only th ing you can do i s put the l i g h t on . If you wanted somebody to turn a radio on or pass you a hankie or something you would have t o . The only way, unless somebody happened to be i n there—. And i f she d o n ' t get the l i g h t r i g h t away or i n a reasonable time you may get past the po in t where you want the h e l p . A high degree of dependency could therefore lead to i s o l a t i o n . Reading was not always pos s ib le for the dependent subject because th i s required the a b i l i t y to hold a book and to be able to turn the pages. One subject had attempted to maintain some sensory i n p u t : Wel l I t r i e d a r a d i o . I c o u l d n ' t handle i t my hands are so bad, I c o u l d n ' t handle the c o n t r o l s . I j u s t t r i e d for a few days . I had to turn i t back because I c o u l d n ' t handle i t . A radio would be a l r i g h t i f i t had bigger contro l s on i t . Another recounted how she had reduced her a c t i v i t y . She used earphones at a l l t imes: W e l l , I watched things l i k e spor t s , but I have given up on my p u b l i c t e l e v i s i o n s t a t i o n because i t means changing my earphones (when I want the radio) and I can change the s t a t i o n but I c a n ' t turn i t o n . My eyes got t i r e d too a f t e r a w h i l e , but I know I can l a s t through a hockey game. But then I would have l i k e d to put the ear phones on the radio but that means c a l l i n g someone at n ight and they are so busy. Now I j u s t use the r a d i o . Some subjects were aware that equipment could be modified but saw the environment as a b a r r i e r . One person explained a t length : If we had the r i g h t f i x ture s fo r TV we could have TVs but they haven ' t got the f i x ture s i n here . They have a long arm that they can—one end i n t o t h i s w a l l f i x t u r e . And that supports the TV and i t i s a t the foot of the bed. 79 And you have c o n t r o l over i t . And you can. As a matter of f ac t you can swing i t around wherever you want t o . The i d e a l th ing would be of course to have a remote c o n t r o l and you could j u s t have the TV set where you wanted i t , but I d o n ' t know. You c a n ' t even buy a TV and put i t i n here because there i s no way to put i t . Some people have TVs but they have them on tables I think d o n ' t they? I guess you could do that but there ' s not room i n here . Although subjects were often aware of more widely used equipment such as remote c o n t r o l s , they appeared genera l ly unaware of more simple equipment such as book stands and page turners , or of how to obta in them. Concern about expense was perhaps a l so a f ac tor i n t h e i r apparent hes i tancy to ask, but they d i d not appear to have had anyone make suggestions or provide information about such a ids to t h e i r favoured a c t i v i t y . A concomitant of increa s ing dependency was learning of new a t t i tudes which subjects be l ieved the s i t u a t i o n required of them, i n p a r t i c u l a r learning acceptance, pa t i ence , and to ad jus t . As one explained t h i s could be d i f f i c u l t : I 've learned to be pa t i en t here . You have t o . You can put on the b e l l and wait a very long t ime. I know that they can ' t help i t when they are so short s ta f fed but I c a n ' t a n t i c i p a t e when I need the bathroom e i t h e r . I t would be so much be t te r i f I c o u l d . I had to learn to be pa t i en t and t h a t ' s a l i t t l e d i f f i c u l t when you're used to running things y o u r s e l f . L i v i n g Beyond the I n s t i t u t i o n Relocat ion introduces dis tance from f r i e n d s , family and previous l i f e - s t y l e . At the same time i n the extended care u n i t , subjects were p h y s i c a l l y i s o l a t e d from the outs ide w o r l d . The a b i l i t y to maintain contact with l i f e outs ide the i n s t i t u t i o n 80 appeared to be of p a r t i c u l a r importance i n that i t provided stimulation, decreased d i s c o n t i n u i t y , and enabled i n t e r a c t i o n which contributed to maintaining some sense of belonging and self-esteem f o r the subjects. The a b i l i t y to get "beyond" the i n s t i t u t i o n was dependent upon eit h e r a close r e l a t i o n s h i p with at le a s t one person outside and/or the a b i l i t y to be mobile independent of h o s p i t a l s t a f f . These factors enabled contact with the outside world through the mediation of another person or through reading. Closely associated with reading was the subjects' recognition that learning could provide a sense of contact with l i f e beyond the extended care u n i t . Relating to the world outside. The person who as s i s t e d the subject to maintain contact with the outside world was a close r e l a t i v e i n a l l cases but one. In t h i s instance the family had employed a companion who re g u l a r l y took the subject beyond the extended care u n i t . The amount of contact subjects had with t h e i r r e l a t i v e s was high. One person reported, "My husband comes f i v e days a week i n the afternoons a f t e r lunch and takes me out i f the weather i s decent, i n the car." For those subjects whose spouse had died or was unable to v i s i t , family support generally came from one c e n t r a l person and a v a r i e t y of other r e l a t i v e s . A t y p i c a l report was "My s i s t e r comes i n every week and my daughter of course comes at le a s t once a week. My grandchildren come too." 8 1 Not a l l subjects were p h y s i c a l l y able to get out r e g u l a r l y but a l l looked forward at l ea s t to an out ing a t the time of major f e s t i v a l s . These opportuni t ie s to get out and the regular family v i s i t s provided the opportunity to continue to experience the world ou t s ide . One subject expla ined: I can enjoy an hour ' s walk you see with a companion four hours a week, and I love looking a t the f lowers , the bushes. We t r y to go somewhere on the bus that i s run by the c i t y t ranspor ta t ion and have lunch . Then there was companionship and shar ing "goss ip" and news, p a r t i c u l a r l y with g randch i ld ren . One subject reported that she had "the most wonderful granddaughter i n a l l the w o r l d . " Another explained how: "When he comes, I go and chat and laugh and smoke a c igare t te with my grandson down by the p l a n t s . " Each subject had a p a r t i c u l a r person who not only a s s i s t ed him or her by b r ing ing items that had been requested but had provided some degree of emotional support and encouragement. One subject had regular telephone contact with a daughter-in-law at l ea s t once a day. Another expla ined, "My husband's a wonderful man, he has been so good to me. He supports me. He has more f a i t h i n i t [my ge t t ing bet ter ] than I have . " Reading. A l l subjects i n the sample except one woman read . One person reported " A c t u a l l y what I f i n d most solace i n i s r e a d i n g . " Another c la imed, "I keep sane by r e a d i n g . " 82 However, to be able to r e l a t e to the world i n t h i s way seemed to require that the subject was able to get to a qu ie t p r i v a t e place where he or she could spend long periods a lone . What subjects read and how much they read seemed to bear l i t t l e or no r e l a t i o n s h i p to the i n d i v i d u a l s ' educat ional l e v e l or the amount of reading he or she had been able to do so p r e v i o u s l y . However, i n t h i s sample there was a strong preference for h i s t o r i c a l accounts and nove l s . The importance of reading i n the l i f e of any p a r t i c u l a r subject appeared to have increased with increa s ing dependency and decreasing access to other a c t i v i t i e s . One subject f ear ing that f a i l i n g s i g h t might i n h i b i t reading s a i d : The only th ing I can do i s read but l a t e l y I have had trouble with my eyes so i t doesn ' t seem so easy for me to read but I am read ing . I f I c o u l d n ' t read, w e l l , I d o n ' t know what I would do to t e l l you the t r u t h . Subjects explained that reading provided an escape from noise and enabled r e l a x a t i o n . One s a i d , "I d o n ' t l i k e no i se , i t j u s t makes me f e e l on edge. I have to get o f f by myself and read . I can switch o f f p r e t t y w e l l as long as I am far enough away from them." Reading a l so provided a strong l i n k with past l i f e . One person i l l u s t r a t e d : I read a great many h i s t o r i c a l novel s , the opening up of Texas, Wyoming, Arkansas, the States near New Mexico and I knew a certain—because I was born on the p r a i r i e s . I was born on the p r a i r i e s , so I know and there were s t i l l Indians of f the reservat ions when I was a youngster, and I have heard my mother. In her g i r lhood they had been i n 83 Winnipeg j u s t a f t e r the R i e l r e b e l l i o n so I knew something of that l i f e , and we had f r iends i n the country and our town was s m a l l . There was no one i n the sample fo r whom reading provided the only contact with a world beyond the extended care u n i t . But i n a l l cases i t seemed to provide a ready "at hand" opportunity to l i v e beyond the i n s t i t u t i o n , supplementing family contacts and i n c r e a s i n g l y important to some subjects i f these became l i m i t e d i n any way. One person, able to read only for l i m i t e d periods because she could not adequately c o n t r o l hand movements, had organized a radio and earphones which seemed to provide her with some of the s t imula t ion she sought. She expressed what other subjects a l so ind ica ted—that one needed to be able to remain mental ly a l e r t . She s a i d , "So I l i s t e n to the r a d i o , and I pre fer a t a lk show because you get a l l kinds of i dea s . " Subjects who read f e l t they now had opportuni t ie s for l earn ing which had not p r e v i o u s l y been a v a i l a b l e to them. One subject c la imed: I 've always l i k e d h i s t o r y . I think now I 've read a l l the Eng l i sh h i s t o r y . You see on my mother's s ide my grandfather and grandmother came from Kent i n England and I have read a great dea l of the S c o t t i s h and Eng l i sh h i s t o r y . You get a good background of where they l i v e d , at school we got dates and you know the Magna Car ta , Henry the Eighth and a l l tha t , p r e t t y d u l l , but you know when I was over tha t , loved a l l the h i s t o r i c a l . I was wishing I knew more, which I have read s i n c e , but I should have read i t before I went [to England], but I d i d n ' t have the time or the i n c l i n a t i o n at that t ime. Assuming R e s p o n s i b i l i t y for Personal Adjustment Throughout the sub ject s ' accounts of t h e i r t r a n s i t i o n were 84 references to states such as " f i t t i n g i n , " "adjusting," and "doing the best I can." Ultimately four of the f i v e subjects assumed r e s p o n s i b i l i t y f or h i s or her l i f e within the u n i t . This apparently occurred as each subject recognized that he or she was u n l i k e l y to a l t e r the s i t u a t i o n or s p e c i f i c features within i t . One subject s a i d , "I guess I'm not r e a l l y comfortable, but when you know you're helpless, you have to adjust." Assuming r e s p o n s i b i l i t y f o r adjustment seemed to involve the subjects i n reviewing what they might expect i n the future and to some extent the realignment of personal expectations of themselves. Despite the l i m i t a t i o n s on any future that subjects saw they could a n t i c i p a t e , each one determined to maintain h i s or her s e l f - r e l i a n c e . Subjects recognized t h e i r own a c t u a l or p o t e n t i a l p h y s i c a l de c l i n e , but as a group feared above a l l else a decline i n cognitive a b i l i t y . L i v i n g among the c o g n i t i v e l y impaired was f r i g h t e n i n g and subjects c o n s i s t e n t l y expressed the fear that they would experience s i m i l a r d i f f i c u l t i e s . Two subjects explained: The animal sounds i n the dining room, that's t e r r i b l y d i f f i c u l t . You see i n my mind i t ' s always when do I get that way? That's normal I think. * * * Eventually you are going to go out of your head. Well i t makes you wonder that because of the conditions under which you have to put up with. 85 At the same time subjects observed themselves c a r e f u l l y and looked for i n d i c a t i o n s that they were not as capable as they had p rev ious ly been. One descr ibed how: I forget a l l the time because I p lan to do c e r t a i n things and the next th ing I know I 've forgotten about i t . I make notes a l l over the place and then forget where I put the notes . I get so bewildered because my b r a i n won't work proper ly and I j u s t think " W e l l , you 're going to end up the same way." However, they recognized personal strengths even though these d i d not always seem advantageous. One woman s a i d : I'm lucky I'm not as bad as those around me, but i t ' s worse fo r [me] than for some of the o thers , they d o n ' t even know. I have f e e l i n g s . Some of them d o n ' t even f e e l anything because they d o n ' t know, but I'm glad I'm be t te r for my husband's sake. I think that i t must be t e r r i b l e for t h e i r f a m i l i e s . Some people d o n ' t recognize them which i s d r e a d f u l . Subjects often r e f l e c t e d that they had never envisaged the l a t e r years of t h e i r l i v e s even though they a l l had cared for an e l d e r l y parent or spouse a t some t ime . One person who had nursed her fa ther w e l l i n t o h i s e i gh t i e s remarked, "You d o n ' t know what's ahead of you which i s a good t h i n g . " Subjects appeared to have adjusted to t h e i r p h y s i c a l l i m i t a t i o n s , the p o s s i b i l i t y of an extension of these, and the f ac t that they had no a l t e r n a t i v e to l i v i n g i n the extended care u n i t . One person explained "There i s nothing more I can do . The doctor d i d — I ' v e done everything I can about my eyes . I haven ' t got any suggest ions . I t ' s l i k e my a r t h r i t i s . You c a n ' t cure t h a t . " And l a t e r added: 86 Well I don't see any prospect of leaving here. Unless I can f i n d somewhere that—where t h e y ' l l keep me. They won't take me i n a h o s p i t a l . I've got to be i n a home. So I think I probably w i l l b e — y e s . I'm not objecting to that because I don't know anywhere be t t e r . If I could f i n d a place where I could get b e t t e r — l i t t l e better service and be t t e r food I'd go there, but they wouldn't accept me. However, i n d i v i d u a l s apparently continued to fear that they might become l i k e others. One woman r e i t e r a t e d anxiously, "You know, you j u s t wonder whether you are going to be l i k e that next week. [laughs] Well, I'm beginning to lose my memory. That i s , that's the worst." The personal strength of the subj ects i n t h i s sample became very apparent on the occasions when having recognized t h e i r l i m i t a t i o n s and r e f l e c t e d upon possible outcomes they r e i t e r a t e d , often f o r c i b l y , t h e i r need f o r s e l f - r e l i a n c e within the s i t u a t i o n . One subject explained, "Well you have to get along. If you don't l i k e i t you ignore i t . I knew I had to be here. There was no other. I t ' s a matter of j u s t adjusting to i t . I s t i l l f i n d i t tough." The people i n the sample appeared p a r t i c u l a r l y s e l f -r e l i a n t . But even so, they found the adjustment they made very s t r e s s f u l . Yet they d i d not expect or seem even to consider that they could request assistance. One person may have been revealing a v a r i e t y of f e e l i n g s and a t t i t u d e s , but she was adamant that residents had to be s e l f - s u f f i c i e n t . 87 She sa id that she would t e l l a prospect ive re locatee it noth ing . it The interv iew continued: Researcher: Researcher: Subj ec t : Researcher: Subject : Subject : Nothing? Nothing . You'd l e t them come cold? Yes. Because they 'd have to face i t . I t depends on t h e i r own make up what they could do . So you d o n ' t think that t e l l i n g people what i t ' s l i k e , e x p l a i n i n g , would make i t any eas ier? No. Each one would have to face up to i t themselves. None of the subjects expressed any r e a l hope that the s i t u a t i o n would change although some t r i e d to be o p t i m i s t i c for the sake of another . One expla ined: My husband s t i l l hopes I can [get back ] . He never l o s t h i s hope, but my balance i s no good, and according to the n e u r o l o g i s t , there i s nothing they can do. I t doesn ' t give you much hope. Oh, I think I s t i l l have a vague hope. I d o n ' t g ive up e n t i r e l y , but when a neuro log i s t says "I c an ' t do anything for you" i t doesn ' t g ive you much to go o n . However, they a l l appeared to agree with the subject who s a i d , " I d o n ' t have any future as f a r as I am concerned. I c a n ' t see any future but j u s t doing the best I can here and put t ing up with i t . You c a n ' t p o s s i b l y know what i t i s l i k e . Nobody c a n . " The l i m i t e d future they faced was apparent to a l l the sub jec t s . However, they agreed unanimously that they d i d the best they cou ld , even as th i s often meant l i v i n g one day a t a t ime. One subject s a i d , "Now t h i s goal bus iness . What goal i s there . I mean—. A l r i g h t , the next one i s to get over Chris tmas . That ' s as f a r as I can go. I have to l i v e one day 88 at a time." One woman summed up and r e i t e r a t e d the e f f o r t : I'm t r y i n g to be one of the strong people. I struggle to t r y to keep normal. You r e a l i z e that other people [her family] were strong and you f e e l you might t r y to keep up with them. You j u s t have to face up to i t . I don't know [whether I ' l l be here f o r the re s t of my l i f e ] . I hope not, but I have no choice. I ' l l do the best I can that's a l l . Integration Throughout the interviews subjects r e c a l l e d and r e f l e c t e d on t h e i r past l i v e s . Each one singled out, and accentuated through r e p e t i t i o n , incidents and occasions which were of p a r t i c u l a r s i g n i f i c a n c e i n presenting a coherent view of his or her l i f e and p e r s o n a l i t y . Subjects appeared i n doing t h i s , to work towards recognizing t h e i r contribution i n r e l a t i o n to the personal, c u l t u r a l and h i s t o r i c a l circumstances of the time, and the consequent meaningfulness of t h e i r i n d i v i d u a l , personal l i v e s . Each subject considered too the s i g n i f i c a n c e of h i s or her l i f e i n the l i v e s of others. The adaptive task of t h i s phase was to incorporate i n s t i t u t i o n a l i z a t i o n into one's l i f e h i s t o r y . This involved considering l i f e i n the extended care u n i t within the context of a t o t a l l i f e and not evaluating the past i n terms of one's present d i s a b i l i t y . There seemed to be three c l o s e l y integrated themes i n these accounts. 89 1. Personal h i s t o r y ; A l l subjects i n the sample, except one, began t h e i r personal in t roduct ions with b i r t h or e a r l y chi ldhood and then recounted i n sequence the major inc ident s and experiences of t h e i r l i v e s which were of p a r t i c u l a r s i g n i f i c a n c e to them. These included de sc r ip t ions of e a r ly fami ly l i f e and emphasized acceptance, happiness, and success despi te the d i f f i c u l t i e s reportedly faced by f ami l i e s a t the t ime. These s t o r i e s seemed to emphasize and served to maintain for the subjects the sense of i d e n t i t y they had developed over a l i f e t i m e despi te the decreasing capac i t i e s the i n d i v i d u a l s were pre sent ly exper ienc ing . T y p i c a l l y two people descr ibed chi ldhood and achievement: Father was a contractor and he b u i l t the house that we were l i v i n g i n and he had a huge room with a piano i n and everything as large as the d i n i n g room i n there . And we used to have wonderful t imes. A l l the f r iends would come and I ' d p lay the piano and we'd p lay darts and oh, we d i d everyth ing . I always f e e l so sorry for people with smal l f a m i l i e s . They d o n ' t know the fun they are mi s s ing . We r e a l l y had a wonderful t ime. We were a very happy f a m i l y . But father had rheumatic f ever . * * * I went to X Col lege and got a degree there , summa cum laude, might as w e l l blow my own cornet . I t was dur ing the depress ion so I got a very good scholar sh ip to go anywhere I wanted to s tudy. So I chose Y U n i v e r s i t y because the man I wanted to work with was teaching t h e r e . I had read h i s papers i n the s c i e n t i f i c journal s and thought that was what I ' d l i k e to do . So I went to Y and i t was hard going on $50 d o l l a r s a month, but i t was depres s ion . I l i v e d with four other g i r l s i n an apartment where we shared the work and the cost and a f te r four years I got my Ph.D, which doesn ' t mean anything now, but , i t was very i n t e r e s t i n g . 90 I t was quite a shock to aah—move from a female i n s t i t u t i o n of learning to a co-ed place where I was the only woman i n a f a c u l t y of 16, but i t was very i n t e r e s t i n g and I worked day and night. I taught h a l f the time and would n i g h t l y work on my t h e s i s . Close r e l a t i o n s h i p s , e s p e c i a l l y those which r e f l e c t e d the subjects' unique q u a l i t i e s were reported with p r i d e . One woman recounted meeting her husband. She had agreed to accompany a teenage f r i e n d to meet a cousin: So down I goes to the bus terminal and when he gets o f f , when the bus drove i n , he had h i s boy f r i e n d with him—my husband. And r i g h t there and then my husband took to me. Oh yes, I think we went to church then a f t e r that. We went at night and then a f t e r that we have been going ever si n c e . Subjects reviewed how l i f e and expectations i n t h e i r f a m i l i e s contributed to the person they became and were today. One woman r e f l e c t e d : Thank goodness our whole family, the troubles they've had, known how to hold up. They t r i e d to, you know, make the best of i t . They could too, my mother, my father, my s i s t e r , and now I'm l e f t , and I'm not a crying or a whining person. I can't stand temperamental people. We were never allowed to be that way. My mother was—she j u s t wouldn't have that. I don't think that we were that way anyway. 2. World h i s t o r y : When talking, about t h e i r l i v e s , subjects introduced n a t i o n a l and world events which provided a context f o r , and explained some of the choices they had made i n t h e i r l i v e s . They t o l d how events l i k e world depression and war, and the circumstances they imposed, led to personal learning and growth, and i n describing these gave in s i g h t s into the 91 s i g n i f i c a n c e of t h e i r achievements and l i f e as a whole. Mrs. A descr ibed how: We were never able to buy a house. We had come from the p r a i r i e s . My mother had been very i l l . My father had l o s t a ranch, a l l the c a t t l e , the stores he owned and the s laughter house—everything i n the depress ion, extended depres s ion . The p r a i r i e had been heavy snow i n the winter , dry i n the summer, no feed and the c a t t l e had d i e d . I d o n ' t know the whole d e t a i l s . We came out here p r a c t i c a l l y f l a t broke . We were educated but the idea of working never entered our heads. Of course when we came out to Vancouver i t was a case of have t o . I had gone through for a teacher, but I never taught. My mother wasn't w e l l by that time and I was home and I worked i n an o f f i c e . There I s tayed . 3. C o n t i n u i t y : In t h e i r accounts i n d i v i d u a l s appeared to re in force and consol idate a sense of i d e n t i t y they had accrued over a l i f e t i m e . This sense of s e l f as continuous a l so seemed to be re in forced i n accounts which emphasized fami ly as continuous. One subject began a personal i n t r o d u c t i o n with "My grandfather and h i s brother were sent—were brought out here by my great grandfather and they s e t t l e d i n Quebec," and went on to t e l l the s tory of a s i x generation f a m i l y . This account ended with " I have three grandchi ldren which helps a l o t . They 're doing f i n e . " A l l subjects ta lked of t h e i r f a m i l i e s , e s p e c i a l l y t h e i r g randch i ld ren . One person reported with t y p i c a l p r ide "The two g i r l s are—one going to u n i v e r s i t y , one teaching ska t ing , she 's a b e a u t i f u l skater , and my s i s t e r has four boys . They've a l l done very w e l l . They are a great c r e d i t to the f a m i l y . " 92 This apparent r e f l e c t i n g upon and maintaining personal i d e n t i t y , and personal i d e n t i t y with enduring dimensions and d i s t i n c t i v e c h a r a c t e r i s t i c s despi te the decreasing capaci ty the i n d i v i d u a l s were exper iencing , appeared c e n t r a l to the sub ject s ' a b i l i t y to adjust to i n s t i t u t i o n a l i z a t i o n . I t seemed to enable them to see t h e i r r e l o c a t i o n as but one event i n a l i f e t i m e despi te the d i f f i c u l t i e s and fee l ings of d i s c o n t i n u i t y i t in t roduced , and to contr ibute to t h e i r maintaining a sense of se l f-esteem, despi te the threat introduced by d i s a b i l i t y . However i t seemed that most subjects desperate ly sought and needed feedback and confirmation from the immediate environment p a r t i c u l a r l y i f r e l a t i o n s h i p s beyond the extended care u n i t were not very s t rong . Two people repeated p a r t i c u l a r inc ident s throughout the i n t e r v i e w s . They were the only two p o s i t i v e encounters with s t a f f introduced or r e c a l l e d by the sub ject s , but the emphasis placed on them suggested the importance of the support , r e c o g n i t i o n , and need for conf irmation the women be l ieved they rece ived . One s a i d : I s a id to one of the nurses that I wish I had had a fami ly with c h i l d r e n to he lp me out , to he lp us both out and she s a id " w e l l , maybe i t was j u s t as w e l l you h a v e n ' t . If they hadn ' t done a great dea l for you, you'd f e e l neglected" and she s a i d , "some of them do" and I guess that was so . I d o n ' t know. One woman reported : W e l l , then the nurse on duty took charge. She got me to bed and she came i n through the n ight and j u s t smoothed my 93 h a i r . She was the kindest person I have ever—and so I've been here ever s i n c e . But I w i l l never forget that nurse. I think i t was X. She was wonderful. The i n t e g r a t i o n achieved by i n d i v i d u a l s appeared to be not the i n t e g r a t i o n of the person into the environment and the achievement of a sense of mastery, but the i n t e g r a t i o n of a p a r t i c u l a r t r a n s i t i o n i n t o the context of a meaningful l i f e . Individuals did not accept l i v i n g i n the extended care u n i t , but appeared to work to adjust to t h e i r new home and the d i f f i c u l t i e s they faced i n i n s t i t u t i o n a l i z a t i o n . These d i f f i c u l t i e s arose not only i n t h e i r d e c l i n i n g capacity within the s i t u a t i o n , but also i n the threat to i d e n t i t y and self-esteem, and a sense of personal continuity, i n an experience characterized by the d i s c o n t i n u i t y i t introduced. Summary The analysis of the personal accounts of the t r a n s i t i o n experiences of a group of e l d e r l y people l i v i n g i n an extended care u n i t suggested that t h i s t r a n s i t i o n was characterized by f i v e phases. These phases suggested that t h i s group had approached r e l o c a t i o n i n an accepting, l o g i c a l and problem so l v i n g manner. Subjects found the process very d i f f i c u l t , accompanied as i t often was by increasing p h y s i c a l d i s a b i l i t y and a threat to personal i n t e g r i t y . Individuals took r e s p o n s i b i l i t y for t h e i r adjustment to l i v i n g i n an i n s t i t u t i o n a l community and reported that the outcome was that they l i v e d as well as was possible i n the circumstances. I t appeared that from the subjects' vantage r e l o c a t i o n was one i n c i d e n t within the context of a personal l i f e and they worked to maintain a sense of i d e n t i t y and self-esteem despite the d i s c o n t i n u i t y experienced during the t r a n s i t i o n . 95 CHAPTER FIVE INTERPRETATION OF THE FINDINGS The findings of the study outlined i n Chapter Four i n d i c a t e that the t r a n s i t i o n to i n s t i t u t i o n a l l i v i n g experienced by e l d e r l y subjects consists of f i v e phases, each characterized by an adaptive task and a l e v e l of personal c o n t r o l within the s i t u a t i o n . The following d i s c u s s i o n i s introduced as an attempt to understand the unique features of the t r a n s i t i o n to i n s t i t u t i o n a l l i v i n g amongst e l d e r l y subjects. I t i s presented i n three parts: 1 . A b r i e f o u t l i n e of concepts of development i n l a t e r l i f e i n r e l a t i o n to, and as a context f o r , the i n t e r p r e t a t i o n of the findings of t h i s study. 2. An i n t e r p r e t a t i o n of the f i v e phases of the t r a n s i t i o n to i n s t i t u t i o n a l l i v i n g which considers the possible influences on t r a n s i t i o n i n old age. 3. Conclusions of the findings . The i n t e r p r e t a t i o n of the findings presented here suggests that i n s t i t u t i o n a l i z a t i o n amongst e l d e r l y subjects d i f f e r s from other l i f e t r a n s i t i o n s . How and why t h i s d i f f e r e n c e occurs i s explained as a) a function of the development that occurs i n old age, b) a concomitant of f r a i l t y , and c) a response to a p a r t i c u l a r s i t u a t i o n . 96 Development i n Later L i f e The i n t e r p r e t a t i o n of the f ind ings of t h i s study assumes the v a l i d i t y of developmental theory, and i n p a r t i c u l a r E r i k s o n ' s l i f e stage model of development, i n r e l a t i o n to o ld age. Where a f i n a l goa l of human development i s s p e c i f i e d , developmental ists genera l ly agree that t h i s i s a sense of i n t e g r i t y of t h e . s e l f (Er ikson , 1959; Jung, 1933; Peck, 1968). In l a t e r l i f e , desp i te pos s ib le d e c l i n e , the primary focus of development i s seen as a search for meaning and the attendant percept ion of the i n t e g r i t y of one's l i f e experience (Er ik son , 1959; Jung, 1933). The f indings of t h i s study suggest that i n s t i t u t i o n a l i z a t i o n with i t s goal of mastery, and development of ego- integra t ion as the culminat ion of the f i n a l l i f e stage occur concurrent ly and have r e c i p r o c a l e f f e c t s . E r i k s o n ' s (1959) concept of successive l i f e - s t a g e development i s presented here as an i n t r o d u c t i o n to the i n t e r p r e t a t i o n of the f indings of the study i n r e l a t i o n to the concept of e g o - i n t e g r a t i o n . Er ikson (1959) claims that development occurs through a se r ie s of e ight c r i s e s (see Figure 3) which charac ter ize l i f e from b i r t h to death. A c r i s i s represents a d i a l e c t i c a l s t ruggle between two opposing forces and r e s u l t s i n new perspect ives and ego-strengths for the i n d i v i d u a l . The r e s o l u t i o n of each c r i s i s cons t i tu tes a l i f e s tage. 97 Figure 3. A l i f e stage theory of development (Erikson, 1959). Period of L i f e Psychosocial c r i s i s Emerging Strength Infancy , Trust vs mistrust Hope Early childhood Autonomy vs shame doubt W i l l Play age I n i t i a t i v e vs g u i l t Purpose School age Industry vs i n f e r i o r i t y Competence Adolescence Identity vs i d e n t i t y confusion F i d e l i t y Young adulthood Intimacy vs i s o l a t i o n Love Maturity Generativity vs self-ab s o r p t i o n Care Old age Int e g r i t y vs despair disgust Wisdom 98 The p h y s i c a l , c o g n i t i v e , emotional , s o c i a l , c u l t u r a l , h i s t o r i c a l , and economic contexts of each i n d i v i d u a l l i f e during a p a r t i c u l a r stage determine the way i n which the c r i s i s i s introduced and expressed fo r each person. Each stage i s sy s t emat i ca l ly re l a ted to the r e s o l u t i o n of a l l other stages and previous c o n f l i c t s are renewed with each stage and w i t h i n the context of the c o n f l i c t that predominates at that l e v e l . In t h i s way antecedent strengths and perspect ives are brought to a new maturat ional l e v e l . At the l e v e l of ego- in tegra t ion , then, a l l previous c r i s e s are reworked i n the context of seeing l i f e as meaningful . I n s t i t u t i o n a l i z a t i o n appears to complicate t h i s reworking i n that the reasons for i n s t i t u t i o n a l i z a t i o n and the environment wi th in the i n s t i t u t i o n may re introduce and emphasize negative aspects of previous l i f e c r i s e s . The experience of t r a n s i t i o n to i n s t i t u t i o n a l l i v i n g can be conceptual ized as r e in t roduc ing the c r i s e s of e a r l i e r l i f e stages, regardless of whether the c o n f l i c t inherent i n each one was p r e v i o u s l y resolved or not . This conceptua l i za t ion i s supported i n the f indings of t h i s s tudy. From t h i s perspect ive i n s t i t u t i o n a l i z a t i o n can be seen to exacerbate the e f fects of previous l i f e c r i s e s and may i n h i b i t achievement of the goal of e g o - i n t e g r a t i o n . Er ikson (1978) proposes that ego- integrat ion i s dependent upon a l l previous stages but i s most c l o s e l y r e l a t ed to the 99 e a r l i e r development of t r u s t and i d e n t i t y . Trust i n oneself, and i n the world as p o s i t i v e l y responsive, provides the basis f o r a l l i n t e r a c t i o n s . Identity i s a process which unites a l l outcomes of e a r l i e r self-concepts and c o n f l i c t s i n adolescence and then continues to develop i n r e l a t i o n s h i p s with others and s o c i e t y as a whole. The importance of i d e n t i t y f o r adulthood l i e s i n the foundation i t provides f o r organizing and evaluating the actions of the s e l f , and f o r a s s i m i l a t i n g further experience into the developing concept of the s e l f as a competent, consistent, and trustworthy adult able to contribute i n a productive way (Erikson, 1959, 1978, 1982). The T r a n s i t i o n to I n s t i t u t i o n a l L i v i n g This study suggests that the t r a n s i t i o n to i n s t i t u t i o n a l l i v i n g consists of f i v e phases. Underlying, and to a large extent d i r e c t i n g , behaviour i n each phase i s the i n t e r a c t i o n of the i n d i v i d u a l s ' a b i l i t i e s and developmental needs, and environmental support. The f i r s t two phases, a n t i c i p a t i o n and reaction, introduce challenges to previous developmental achievements which may or may not be met. Phases three and four, i n t e r p r e t a t i o n and negotiation, are the phases of d e f i n i n g and developing coping st r a t e g i e s s p e c i f i c to the s i t u a t i o n . The f i f t h phase, in t e g r a t i o n , represents the perception of i n s t i t u t i o n a l i z a t i o n as one i n c i d e n t i n a t o t a l l i f e s t ory. 100 Each of these f i v e phases w i l l be discussed i n r e l a t i o n to the challenges i t introduces and the coping s t r a t e g i e s used within i t by the subjects. A n t i c i p a t i o n A n t i c i p a t i o n i s defined as the period leading to admission i n which subjects acknowledge t h e i r need f o r i n s t i t u t i o n a l i z a t i o n and prepare f o r admission. I t i s possible that the challenges introduced at t h i s time a r i s e p r i m a r i l y i n threats to t r u s t , autonomy, and i n i t i a t i v e , and that the apparent lack of threat experienced by the subjects i n th i s study r e f l e c t e d t h e i r s uccessful previous development. L i t e r a t u r e on t r a n s i t i o n , p a r t i c u l a r l y t r a n s i t i o n i n ea r l y l i f e tends to describe t r a n s i t i o n s as having p o s i t i v e outcomes and to accept that a n t i c i p a t i o n of a t r a n s i t i o n i s characterized by looking forward to a new status and i t s benefits (Schlossberg, 1981). However, t r a n s i t i o n i n l a t e r l i f e does not carry the same connotations of p o s i t i v e progression and attaina b l e goals. Rather i t i s seen as loss and sometimes r e j e c t i o n (Shanas, 1962). At the same time, developmental t r a n s i t i o n s i n ea r l y l i f e are valued on the basis that they contribute to an i n d i v i d u a l ' s personal development, expressed i n p r o d u c t i v i t y and r e l a t i o n s h i p with others, and are, therefore, seen as meaningful by the subject and s o c i e t y . If the outcome of development i n old age i s ego-integration, l i v i n g i n contemporary western societ y 101 introduces d i f f i c u l t y f o r e l d e r l y people because ego-integration has p o t e n t i a l value and meaning only f o r the subject. The subjects recognized t h e i r d e c l i n i n g p h y s i c a l a b i l i t i e s and acknowledged t h e i r need f o r i n s t i t u t i o n a l i z a t i o n , yet could not r e c a l l that they had any expectations of t h e i r new homes or hopes for p o s i t i v e outcomes of t h e i r r e l o c a t i o n . They saw i n s t i t u t i o n a l i z a t i o n as a s i t u a t i o n they could not change and, therefore, would accept. I t did not appear, at le a s t i n retrospect, to o f f e r a threat i n so f a r as they saw i t "as one of those things." At this time subjects trusted themselves. They reported confidence i n the decisions they made and r e i t e r a t e d that they believed that as a p a r t i c u l a r type of person they would learn to adjust. They saw themselves as r e l i a b l e enough to af f i r m that they would not "give up." In doing t h i s they demonstrated what i n developmental terms i s described as the achievement of t r u s t — t h e "conviction that one's emotional and p h y s i c a l needs w i l l be s a t i s f i e d , that one i s ' a l l r i g h t ' within one's s e l f and within one's body; and that the f r u s t r a t i o n as we l l as the demands coming from the outside generally make sense" (Sherman, 1981, p. 27). Subjects claimed that they had not forseen i n s t i t u t i o n a l i z a t i o n because t h e i r experience and knowledge were l i m i t e d . They had a l l cared f o r a close r e l a t i v e who had been c h r o n i c a l l y i l l ; f o r them the presence of an e l d e r l y dependent family member had been a common feature of family l i f e . They d i d 1 0 2 not consider i n s t i t u t i o n a l care because i n s t i t u t i o n s were not generally a v a i l a b l e . Although they had not expected that they would ever be i n s t i t u t i o n a l i z e d , when dependency became apparent, l i f e i n a f a c i l i t y became a way of avoiding placing a burden on others. Their experience with chronic i l l n e s s then, contributed to t h e i r acceptance of the s i t u a t i o n , because they had i n s i g h t i n t o what g i v i n g care involved, but d i d not give them i n s i g h t into what l i v i n g i n the extended care u n i t would be l i k e . Subjects reported that they received no preparation f o r what they were to experience. This may have ar i s e n because they a l l had been transferred from another i n s t i t u t i o n and i t was presupposed that p h y s i c a l condition precluded such preparation. Subjects f e l t , however, that preparation would not have been h e l p f u l as they were required to adjust i n t h e i r own way. From the beginning of the t r a n s i t i o n subjects had assumed that they would be required to adjust and t h i s assumption i s also apparent i n r e l o c a t i o n l i t e r a t u r e . Whether adjustment can be expected of e l d e r l y subjects does not appear to be discussed. During the a n t i c i p a t i o n phase subjects saw themselves as autonomous and i n control of t h i s preparation f o r i n s t i t u t i o n a l i z a t i o n . Apparently t h i s was made possible because r e l a t i v e s had accepted d i r e c t i o n and complemented the subjects' a b i l i t i e s , but d i d not take t o t a l control of the s i t u a t i o n . 103 L i t e r a t u r e , however, suggests that i n d i v i d u a l s f ac ing i n s t i t u t i o n a l i z a t i o n may q u i c k l y lose c o n t r o l because a) of the symbolic meanings associated with i n s t i t u t i o n a l i z a t i o n , and b) once ass i s tance i s i n i t i a t e d dependency i s accepted "both by soc ie ty and the i n d i v i d u a l — r e g a r d l e s s of the o lder person's l e v e l of a c t i v i t y . . . because the personal and s o c i e t a l s tereotype i s one of lack of power and s tatus" (Hickey, 1979, p . 533). Although dependency i s expected and may i n f ac t occur , Roscow (1974) points out that there i s no e f f e c t i v e s o c i a l i z a t i o n for the r o l e of e lder yet autonomous adul t i n Western s o c i e t y . I t appears that unless the i n d i v i d u a l can conceive of and accept t h i s ro le he or she i s at r i s k of l o s ing personal autonomy and i n i t i a t i v e which a f ford c o n t r o l . Reaction The reac t ion phase i s defined by a sub jec t ' s recogni t ion of the l i m i t a t i o n s imposed by d e c l i n i n g a b i l i t i e s and the environmental s i t u a t i o n . I t i s charac ter ized by the predominance of a sub jec t ' s r eac t ive ra ther than proact ive responses wi th in the new environment. Hopson and Adams (1976) i n a general d i s c u s s i o n of t r a n s i t i o n propose that immobi l i za t ion , d e n i a l , and lack of a b i l i t y to understand, reason, or p lan are c h a r a c t e r i s t i c s of the e a r l y stages of any t r a n s i t i o n and a l low a moratorium i n preparat ion for adjustment. 104 E l d e r l y subjects i n t h i s study d i d not, i n retrospect, report a period of immobilization or deny t h e i r i n i t i a l responses, whether t h i s was due to a lack of r e c a l l or whether i t was unrecognized by the subjects i s not apparent but t h e i r emphasis on "facing up" may have decreased or precluded such responses. L i t e r a t u r e suggests that a lack of d e n i a l or s i m i l a r responses may occur as a function of developmental stage. Smith (1980) questions whether e l d e r l y people i n s t r e s s f u l s i t u a t i o n s are able to "take time out" when he suggests that "the quest f o r meanings. . .becomes a matter of l i f e and death urgency" (p. 1055). Marshall (1975b) introduces another r a t i o n a l e . He claims that the need f o r ego-integration becomes i n c r e a s i n g l y urgent and d i r e c t i v e because i t i s a function of perceived distance from death. C e r t a i n l y f o r the subjects, f r a i l t y and admission to the extended care u n i t introduced the consideration of a li m i t e d future. This proposed "sense of urgency" amongst e l d e r l y people i n s t r e s s f u l s i t u a t i o n s may provide an explanation f o r the high anxiety and i n t e n s i t y of the reaction to i n s t i t u t i o n a l i z a t i o n experienced by some e l d e r l y relocatees. I t can also be suggested that the reaction would be exacerbated when i n s t i t u t i o n a l i z a t i o n i s associated with f r a i l t y which l i m i t s the p o s s i b i l i t y of being proactive i n the new s i t u a t i o n . 105 It i s postulated that during t r a n s i t i o n subjects experience a "process of unhooking from the past" (Hopson & Adams, 1976) which involves breaking attachments with the circumstances of one's previous l i f e , and a "change of assumptions about oneself and the world [which] requires a corresponding change i n behaviour and r e l a t i o n s h i p s " (Scholssberg, 1981, p. 5). In contrast the e l d e r l y subjects i n t h i s study worked to maintain contacts with r e l a t i v e s and l i f e beyond the i n s t i t u t i o n and saw t h i s as e s s e n t i a l to t h e i r well-being. The findings of the study suggest that f o r e l d e r l y subjects d i s l o c a t i o n from previous l i f e has negative consequences and that the negative experiences of the reaction phase a r i s e p r i m a r i l y from the d i s c o n t i n u i t y inherent i n r e l o c a t i o n . This i s supported i n re l o c a t i o n l i t e r a t u r e which claims that the degree of d i s c o n t i n u i t y between pre- and post-relocation settings i s related to p h y s i c a l and mental decline i n the e l d e r l y (Turner, Tobin, S Lieberman, 1972). As subjects pointed out, they had at best an uncertain and limited f u t u r e . Their basis f o r maintaining a p o s i t i v e self-concept and a sense of con t i n u i t y lay i n the s e c u r i t y of t h e i r past experiences. At the same time each person had close r e l a t i o n s h i p with and the support of a r e l a t i v e which subjects claimed enabled them to maintain contact with the outside world. 1 0 6 The reac t ion phase with i t s p o t e n t i a l for decreasing s e l f -esteem and loss of c o n t r o l , challenges an i n d i v i d u a l ' s sense of i d e n t i t y and the a b i l i t y to achieve ego- in tegra t ion . Er ikson (1959) claims that to perform any r o l e w e l l an i n d i v i d u a l must see both him or h e r s e l f and the world around as trustworthy, and have a sense of personal autonomy, i n i t i a t i v e and competence. The subject s ' responses during the reac t ion phase appear to i n d i c a t e that i n s t i t u t i o n a l i z a t i o n , as p o s s i b l y other t r a n s i t i o n s i n l a t e r l i f e , challenges i d e n t i t y and a l l i t s components, p a r t i c u l a r l y self-esteem because i t questions the q u a l i t i e s that have been developed through the e l d e r l y person's l i f e and, there fore , requires nego t i a t ion between se l f -concept and s e l f -i d e a l . The react ions to i n s t i t u t i o n a l i z a t i o n expressed by the subjects i n d i c a t e that t h i s t r a n s i t i o n reemphasized the c o n f l i c t s between t r u s t and mi s t ru s t , and i d e n t i t y and confus ion . How t h i s occurs i s discussed below. The Re la t ionsh ip Between I n s t i t u t i o n a l i z a t i o n and a Sense of  Trust During the reac t ion phase of the t r a n s i t i o n to i n s t i t u t i o n a l l i v i n g subjects found t h e i r views of themselves as s e l f - r e l i a n t people , which they had maintained through the a n t i c i p a t i o n of i n s t i t u t i o n a l i z a t i o n , were severe ly cha l lenged . 107 At the same time t h e i r perception of the environment as trustworthy was questioned. P r i o r to admission p h y s i c a l decline had introduced the f r a i l t y and u n r e l i a b i l i t y of each person's p h y s i c a l being. Individuals seemed to have been able to re a l i g n values and s e l f -perceptions related to p h y s i c a l capacity to achieve what Peck (1968) terms "body transcendence" as opposed to "body preoccupation." With i n s t i t u t i o n a l i z a t i o n p h y s i c a l dependency was emphasized both i n the organization of the day and i n the l i m i t a t i o n s i t placed on personal a c t i v i t y within the u n i t . At the same time subjects r e a l i z e d the f r a g i l i t y of t h e i r cognitive a b i l i t i e s which had to date proved dependable and reinforced a sense of personal s e c u r i t y and t r u s t . They recognized, r e i t e r a t e d and reassured themselves that they were capable but the very r e a l fear that "one's mind would go" remained. This concern, the anxiety i t generated, and the subjects' emphasis on the personal confirmation they received from others, suggested the strength of the need to be able to t r u s t at least some aspect of oneself. With i n s t i t u t i o n a l i z a t i o n the subjects' expectations that the world was dependable, predictable and would meet t h e i r personal needs were also challenged. Individuals found that waiting f o r assistance, e s p e c i a l l y i n d i f f i c u l t or threatening circumstances, causes d i s t r e s s and fear of the consequences of 108 not being able to get help for oneself or others. I n t e r e s t i n g l y , subjects d i d not expect that the environment would provide emotional, cognitive, or s o c i a l support. However, i t would appear that an i n d i v i d u a l ' s t r u s t i n both him or h e r s e l f and the environment relates to the degree of environmental support that person receives. Erikson (1982) suggests a close r e l a t i o n s h i p between t r u s t and e g o - i n t e g r i t y . From the perception that personal needs w i l l be met, hope develops through t r u s t i n oneself, a n t i c i p a t i o n of the future, a sense that "one has done one's best" and u l t i m a t e l y f a i t h i n the meaningfulness of personal contribution (Erikson, 1978, 1982). In old age, without hope, despair and d i s s o l u t i o n of personality may occur (Erikson, 1959). Whereas subjects i n t h i s study seemed able to r e t a i n a sense of hope and "personal" s e c u r i t y , i t i s possible that f o r others contradictory forces may become overwhelming during the reaction phase. It appears there may be four options. An e l d e r l y relocatee may: a) maintain a sense of personal i n t e g r i t y despite a recognition of the d i f f i c u l t i e s of the s i t u a t i o n and develop str a t e g i e s whereby he or she may become proactive in' at l e a s t some aspects of d a i l y l i f e . b) deny that there i s any challenge to self-concept. 109 c) withdraw from the s i t u a t i o n . Withdrawal may be accompanied by a loss of r a t i o n a l a b i l i t y and an associated withdrawal to a f e e l i n g s t a t e . The assumption made i s that the disoriented old i n d i v i d u a l loses r a t i o n a l i t y to r e t r e a t from a p a i n f u l r e a l i t y and returns to the past to resolve unfinished c o n f l i c t s ( F e i l , 1982). d) see the s i t u a t i o n as hopeless and beyond personal c o n t r o l . Despair and hopelessness are synonymous and Erikson (1959) a l l i e s despair with d i s i n t e g r a t i o n of the p e r s o n a l i t y . In despair, the i n d i v i d u a l w i l l submit to the imminent loss of being and i n t e g r i t y , w i l l f i n a l l y "give up," and w i l l no longer acknowledge s e l f or others. The Relationship Between I n s t i t u t i o n a l i z a t i o n and the Maintenance  of Personal Identity Identity refers to the configuration of s e l f "-perceptions and evaluations that are meaningful to the i n d i v i d u a l (George, 1980). I t i s an envolving, not a s t a t i c q u a l i t y , a process i n i t s e l f , and a process of developing one's s e l f . Because of the emphasis on p r o d u c t i v i t y i n western s o c i e t i e s i d e n t i t y i s often expressed p r i m a r i l y i n work and productive roles and these may be seen as c e n t r a l to an i n d i v i d u a l ' s l i f e . In t h i s way a person may evaluate self-worth i n terms of f u n c t i o n a l or monetary value i n s o c i e t y . This may be adaptive i n e a r l y and m i d - l i f e but as Sherman (1981) points out 110 i s "not a v a l i d or emotionally sound standard f o r s e l f -evaluation, i n p a r t i c u l a r by older persons" (p. 5). The people i n t h i s study appeared to have a strong sense of personal i d e n t i t y . They had apparently expressed autonomy i n both w i l l and s e l f - c o n t r o l and saw themselves as the o r i g i n a t o r of the experiences of t h e i r l i v e s . They r e i t e r a t e d t h e i r past competence i n both productive and a f f e c t i v e r o l e s , but work had not been the c e n t r a l feature of any subject's l i f e . The challenge to personal i d e n t i t y introduced with i n s t i t u t i o n a l i z a t i o n lay not i n the f a c t that work roles were c e n t r a l to t h e i r self-concept but occurred because the d i s c o n t i n u i t y introduced with r e l o c a t i o n made i t d i f f i c u l t to r e l a t e to any aspect of previous roles or features that they saw as " s e l f . " They expressed this i n t h e i r reported f r u s t r a t i o n of being unable to plan or carry out day-to-day a c t i v i t i e s and meet personal needs and a sense of not belonging anywhere. Sherman claims that without s e l f - a f f i r m a t i o n an i n d i v i d u a l may doubt his own e f f i c a c y and fear exposure as "weak, bad, powerless or incompetent" (1981, p. 6). In the t r a n s i t i o n described by Hopson's and Adams' subjects, self-esteem was apparently not so d i r e c t l y a f f e c t e d . These subjects a t t r i b u t e d t h e i r d i f f i c u l t i e s to the environment and not to shortcomings i n themselves. I t can be proposed that the "need" f o r s e l f -development and i n t e g r a t i o n i n old age i s conducive to d i s i n t e g r a t i o n of i d e n t i t y , i f i d e n t i t y i s a) not well 111 es tab l i shed and/or supported through a t r a n s i t i o n , or b) i s f i r m l y rooted i n product ive ro les rather than perceptions of " s e l f " as worthwhile. In terpre ta t ion The i n t e r p r e t a t i o n phase i n the t r a n s i t i o n represents subjects ' attempts to perce ive the environment as p r e d i c t a b l e , and thus enables them to develop a sense of s ecur i ty and exerc i se some c o n t r o l wi th in the new s i t u a t i o n . I t i s character ized by sub ject s ' attempts to exp la in a c t i v i t y i n the u n i t i n p e r s o n a l l y meaningful and ob jec t ive terms and to def ine a r o l e for themselves wi th in that context . This t r a n s i t i o n d i f f e r e d from others these subjects had experienced i n that there was no recognized goa l towards which they could work, or which could give meaning to the t r a n s i t i o n . Marsha l l (1978) descr ibes aging as a "s tatus passage" (p. 350). During any t r a n s i t i o n " i n d i v i d u a l s may be pre-occupied i n d i f f e r e n t measure e i t h e r with ' g e t t i n g out ' of the passage or with the passage i t s e l f " (p. 355). In M a r s h a l l ' s terms people enter ing the extended care u n i t face an i n e v i t a b l e status passage i n that aging and i t s concomitants cannot be avoided and there i s no outcome or e x i t from the passage except through death. The f ac t that subjects worked to def ine a r o l e fo r themselves as e i t h e r p a t i e n t or re s ident appeared to r e l a t e to a sense of needing to p lay that r o l e w e l l . But before t h i s could occur they 112 needed to i n t e r p r e t the s i t u a t i o n they were i n and how t h i s defined what t h e i r r o l e would be. In the extended care u n i t p h y s i c a l care was emphasized and focused on and complemented p h y s i c a l d i s a b i l i t y . While subjects did not expect that the environment would provide emotional, cognitive, or s o c i a l support, the p r i o r i t y given to p h y s i c a l care, however, emphasized f o r the i n d i v i d u a l how dependent he or she was. At the same time subjects were u n w i l l i n g to accept dependency and the patient role as long as they perceived i t as "giving up." The f a c t that subjects experienced uncertainty about t h e i r primary r o l e i n the u n i t seemed to detract from t h e i r sense of s e c u r i t y i n themselves and i n the environment. The s i t u a t i o n , at the same time as p r e s c r i b i n g a r o l e , required an explanation which would allow subjects to incorporate dependency and a sense of doing well within a personally acceptable r o l e . The problem-solving way i n which subjects worked to define a c t i v i t i e s and roles within the extended care u n i t seemed to a r i s e i n the subjects' acceptance of the need f o r i n s t i t u t i o n a l i z a t i o n and the recognition that though i t was not n e c e s s a r i l y pleasant, "that's l i f e . " Rather than working to accept r e a l i t y at t h i s time, subjects appeared more pragmatic, took the s i t u a t i o n as given, and used cognitive s t r a t e g i e s to decide what could or could not be done with the resources a v a i l a b l e to increase t h e i r personal comfort within the i n s t i t u t i o n . 11 3 It seemed that unless residents were given assistance to examine options and plan t h e i r l i f e i n the i n s t i t u t i o n , or roles were c l e a r l y defined f o r them, t h i s approach provided the most e f f e c t i v e means to coping. The i n t e r p r e t a t i o n phase i n t h i s t r a n s i t i o n had l i t t l e p a r a l l e l i n the t r a n s i t i o n described by Hopson and Adams (1976) i n which accepting r e a l i t y required, f i r s t of a l l , the breaking of attachments with the past and t e s t i n g oneself and new behaviours within the new s i t u a t i o n . Once some s t a b i l i t y had been established subjects then worked to understand what the experience had meant. Negotiation The negotiation phase represents an i n d i v i d u a l ' s negotiation, within the environment, to develop or maintain personal need s a t i s f a c t i o n despite d e c l i n i n g personal p h y s i c a l a b i l i t y . I t i s characterized by an i n d i v i d u a l ' s working to develop coping s t r a t e g i e s which enable him or her to r e t a i n personal c o n t r o l , achieve some degree of personal need s a t i s f a c t i o n and a sense of mastery within the new s i t u a t i o n . I n s t i t u t i o n a l i z a t i o n introduces challenges to each person's sense of i d e n t i t y and competence and thus self-esteem. During the negotiation phase a c t i v i t y i s dire c t e d towards maintaining self-esteem and a sense of personal c o n t i n u i t y . Individual a b i l i t y to cope i s r e l a t i v e to personal resources and the support received from r e l a t i v e s , f riends and the u n i t environment. The 114 coping s t r a t e g i e s used by subjects i n t h i s study proved to be high l y e f f e c t i v e within each person's s i t u a t i o n . How and why t h i s was so i s now disussed. Developing the A b i l i t y to Cope George claims that very l i t t l e i s known about coping i n the e l d e r l y and that "without adequate c r i t e r i a we simply do not know what constitutes e f f e c t i v e coping or how external factors should be taken i n t o account" (1984, p. 13). The findings of t h i s study suggest, however, that the subjects exhibited a l l the c h a r a c t e r i s t i c s of e f f e c t i v e e l d e r l y "copers" which are discussed below. Where there appeared to be discrepancies, closer examination revealed that coping could be seen to be relevant and e f f e c t i v e i n r e l a t i o n to the s i t u a t i o n i n which i t occurred. George (1984) describes coping i n terms of two dimensions: 1. Coping o r i e n t a t i o n , which P e a r l i n and Schooler (1978), i n examining coping i n four d i f f e r e n t areas of early adulthood, described as having three categories, here termed a) instrumental coping which i s intended to modify s i t u a t i o n s , b) cognitive coping which i s used to reappraise the meaning of problems, and c) p a l l i a t i v e coping which helps to manage tension. 115 2. Coping mode which defines s p e c i f i c ways of coping, such as information seeking, d i r e c t action, i n h i b i t i o n of act i o n , and i n t r a p s y c h i c responses. The negotiation phase of t h i s study i s characterized by the cognitive and p a l l i a t i v e coping approaches that subjects used. They approached t h e i r s i t u a t i o n i n a problem-solving manner and where they saw that the s i t u a t i o n could not be changed they used p a l l i a t i v e approaches which they described as "accepting." Subjects suggested that they learned to cope i n childhood and e a r l y adulthood. A l l had apparently used p a l l i a t i v e , cognitive, and instrumental approaches to coping throughout l i f e . I t seemed that "accept[ing] the things I cannot change, [having] the courage to change the things I can, and the wisdom to know the d i f f e r e n c e " had become i n c r e a s i n g l y c e n t r a l and e f f e c t i v e throughout subjects' l i v e s and as dependency increased. Instrumental s t r a t e g i e s are c l e a r l y based i n a c t i v i t y , but p h y s i c a l and energy resources obviously l i m i t e d any opportunity f o r subjects i n t h i s study to a l t e r the circumstances of t h e i r l i v e s . Not only were cognitive and p a l l i a t i v e approaches l i k e l y to be more e f f e c t i v e but i t can be suggested that i n these subjects' s i t u a t i o n they were highly adaptive. At the same time they may have been the only strategies l i k e l y to be e f f e c t i v e i n such circumstances and considering i n d i v i d u a l resources and the environmental context. 116 The findings of a study of stress i n subjects aged f i f t y - f i v e to seventy-five outlined i n the report of coping by George (1984) support the f i n d i n g that cognitive and p a l l i a t i v e strategies are most e f f e c t i v e amongst e l d e r l y subjects. However, George (1984) had examined process models of coping which "emphasize an act i v e stance toward the environment and a r a t i o n a l decision-making process i n which the i n d i v i d u a l calmly and methodically searches out a l t e r n a t i v e s , p r i o r i t i z e s them, chooses the best a l t e r n a t i v e and behaviourally implements i t i n a timely manner" (p. 110) and from this perspective she found no evidence of a process approach to coping. This d i f f e r e d from the findings of t h i s study but r e f l e c t e d the proposals of the Hopson and Adams model (1976). I t can be suggested that the use of cognitive problem so l v i n g may be related to f r a i l t y , f o r the subjects interviewed i n both the George (1984) and the Hopson and Adams (1976) studies were independent, a c t i v e and younger than those i n t h i s study. The problem-solving o r i e n t a t i o n i n process models can be interpreted as a cognitive coping strategy, and one which i s p a r t i c u l a r l y conserving of energy resources and, therefore, having great p o t e n t i a l f o r effectiveness amongst f r a i l e l d e r l y subjects. The comparative findings of studies on coping would suggest that energy resources influence the type and effectiveness of coping i n a l l age groups. The Hopson and Adams (1976) report proposes that high energy a c t i v i t y was t y p i c a l of 117 adjustment amongst younger subjects and t h i s contrasts markedly with the findings of t h i s study where subjects' energy resources were l i m i t e d . The above consideration of the findings of t h i s study i n contrast to the findings of other studies seems to i n d i c a t e that the demands of a p a r t i c u l a r s i t u a t i o n are the primary determinants of coping behaviour. This idea i s also supported by P e a r l i n and Schooler (1978) who suggest that e f f e c t i v e coping r e l a t e s not only to the i n d i v i d u a l p e r s o n a l i t y but to the s i t u a t i o n i n which coping i s required, and that e f f e c t i v e i n d i v i d u a l s used instrumental, cognitive or p a l l i a t i v e s t r a t e g i e s i n d i f f e r e n t r o l e s . In the examination of s p e c i f i c coping s t r a t e g i e s George (1984) found that d i r e c t action and i n t r a p s y c h i c responses were the most favoured coping modes used by the subjects i n her study while information seeking and i n h i b i t i o n of action were r a r e l y used. For the subjects i n t h i s present study intrapsychic responses and information seeking were the only coping modes av a i l a b l e to them. An unexpected f i n d i n g was that, despite t h e i r lack of knowledge and information about the u n i t and the a c t i v i t i e s within i t , subjects d i d not use information-seeking modes. Why t h i s occurred i s not c l e a r but the subjects' perception that s t a f f were very busy may have contributed. I t i s possible that the negotiation described i n t h i s study r e f l e c t s one pattern of coping. A l l subjects i n the study had s i m i l a r backgrounds and good s o c i a l support and appeared to be 1 18 s i m i l a r i n p e r s o n a l i t y type. Whether or not i t was a f a c t o r of t h e i r s i m i l a r i t i e s , they a l l directed t h e i r coping e f f o r t s towards maintaining c o n t r o l and maintaining or developing sources of need s a t i s f a c t i o n . Maintaining c o n t r o l . Throughout the subjects' accounts were references to i n d i v i d u a l s as " i n c o n t r o l " and s e l f - d i r e c t i n g people. However, i t was during the negotiation phase that t h i s s e l f - p e r c e p t i o n was most strongly challenged as subjects worked to maintain a f e e l i n g of influence over t h e i r d a i l y a c t i v i t i e s . As p h y s i c a l dependency increased, c o n t r o l became more cognitive and d i r e c t e d towards c o n t r o l l i n g t h e i r own behaviour and perceptions. Apparently what made i t possible f o r them to maintain control was t h e i r a t t i t u d e s , strength of w i l l and autonomy, and the problem-solving approaches they used. Subjects demonstrated strength of w i l l , s e l f - r e s t r a i n t and con t r o l i n statements such as "I make myself do i t . " Although they f e l t h e lpless, they did not express shame or doubt i n t h e i r e f f i c a c y ; rather they saw i t as "one of those things that could not be changed." This seems relevant to the subjects' a b i l i t y to cope i n the l i g h t of reports by Jahoda (1958) and Lazarus (1966) which suggest that attitudes are relevant to coping. These writers claim that a sense of s e l f - e f f i c a c y and a confidence i n one's a b i l i t y to i n i t i a t e and con t r o l personal experience are necessary f o r e f f e c t i v e coping. 119 These att i t u d e s can also be interpreted as a demonstration of autonomy which Erikson (1959) describes as "the unbroken determination to exercise free choice as well as s e l f - c o n t r o l " (p. 67). In adulthood t h i s i s expressed i n a sense of being independent and the o r i g i n a t o r of one's own actions, and of being able to exercise w i l l and s e l f - c o n t r o l . This s e l f - a f f i r m a t i o n provides a motivation f o r the i n d i v i d u a l and was often expressed by the subjects i n t h i s study i n t h e i r determination not to "give up." At the same time the demonstration of s e l f - a f f i r m a t i o n can be suggested as a further c h a r a c t e r i s t i c of those who cope e f f e c t i v e l y i n old age. Subjects i n t h i s study were s e l f -d i r e c t i n g and were (or at l e a s t wished and attempted to be) proactive i n t h e i r r e l a t i o n s h i p with the environment. The perception of c o n t r o l seems to be c l o s e l y related to whether i n d i v i d u a l s are generally proactive or r e a c t i v e i n t h e i r responses to the environment (E z e k i e l , 1968; Tyler, 1978). Rotter, Seeman, and Liverant (1962) claim that each i n d i v i d u a l has a stable tendency to perceive events and t h e i r outcomes as within or beyond personal c o n t r o l regardless of the s i t u a t i o n . Findings c o n s i s t e n t l y i n d i c a t e that older people e x h i b i t higher levels of perceived i n t e r n a l c o n t r o l than do younger people (George, 1980) and generally use coping strategies r e f l e c t i n g an i n t e r n a l locus of c o n t r o l (Reid, Haas, & Hawkins, 1977; Staats, 1974). What i s not discussed i n l i t e r a t u r e i s whether 120 i n t e r n a l l y oriented coping s t r a t e g i e s are (a) a function of o l d age, (b) a function of d e c l i n i n g p h y s i c a l capacity, or (c) a f a c t o r of the l i f e - l o n g development of a cohort which experienced depression and wars beyond t h e i r personal i n f l u e n c e . L i t e r a t u r e on the c o n t r o l exercised by e l d e r l y people i s problem oriented and emphasizes processes of loss of c o n t r o l and developing powerlessness and a l i e n a t i o n (Hickey, 1979; M i l l e r , 1983). A comparison of t h i s l i t e r a t u r e with the findings of t h i s study also suggests that during i n s t i t u t i o n a l i z a t i o n the i n d i v i d u a l ' s sense of autonomy and c o n t r o l i s challenged. With increasing dependency, i n d i v i d u a l s may r e t a i n control through using cognitive coping s t r a t e g i e s , or choosing t o t a l compliance or aggression. Roberts (1978) explains that threats to s e l f -a ssertion may r e s u l t i n taking "power to one's own stance" and the choice of noncompliance, although f a r more often compliance has been reported as an outcome of loss of control i n t h i s age group (Schulz, 1976; S t r i e b & Schneider, 1971). May (1972) suggests that aggression or, at the extreme, violence, represents and i s stimulated by the f a i l u r e to gain power. When an e l d e r l y person f a i l s to gain recognition or to maintain self-esteem through the performance of the a c t i v i t i e s of d a i l y l i f e or compliance, aggressive behaviour becomes a means to autonomy. I t i s i n t e r e s t i n g to note, however, that Tobin and Lieberman (1976) suggest that amongst 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 , h o s t i l i t y , 121 assertiveness and aggression are correlated with long-term s u r v i v a l but apparently have a negative e f f e c t on self-concept. I t seems then, that i f self-esteem i s to be maintained through the i n d i v i d u a l ' s perception of him or h e r s e l f as a competent and autonomous person, cognitive and p a l l i a t i v e s t r a t e g i e s are c e n t r a l to e f f e c t i v e coping when an i n d i v i d u a l i s p h y s i c a l l y dependent. Maintaining or developing sources of need s a t i s f a c t i o n . Within the extended care u n i t the range of acceptable a c t i v i t i e s which subjects could i n i t i a t e , carry out or p a r t i c i p a t e i n i s l i m i t e d . However, a c t i v i t i e s which subjects reported as most important to them can be interpreted within the context of developmental theory as those most conducive to the maintenance of self-esteem, a sense of continuity, and thus ego-i n t e g r a t i o n . At f i r s t subjects appeared to have attempted to r e l a t e to p r e - i n s t i t u t i o n a l a c t i v i t y . They talked about t h e i r past roles and t r i e d to define a c t i v i t y which would give them some sense of competence. They suggested three ways to do t h i s : 1. In supporting family or others i n the community with monetary assistance or assistance i n d e c i s i o n making. Opportunities to do t h i s were limited and varied from i n d i v i d u a l to i n d i v i d u a l . 1 2 2 2 . In "helping" within the extended care u n i t e i t h e r i n a s s i s t i n g s t a f f with small tasks or responding to requests of other residents where t h i s was p o s s i b l e . 3. In attempting to r e t a i n creative roles i n such a c t i v i t i e s as gardening, carving, k n i t t i n g , or playing the piano. However, a l l subjects needed assistance to i n i t i a t e or to carry out these a c t i v i t i e s . As time went on t h e i r confidence i n t h e i r a b i l i t y and fear of f a i l u r e increased so that i t seemed that without encouragement and support they would not recommence t h e i r former hobbies. As they recognized that dependency would p o s s i b l y increase subjects concentrated more on gaining need s a t i s f a c t i o n through u t i l i z i n g and appreciating cognitive c a p a c i t i e s . Subjects worked "to keep sane" and saw maintaining sensory stimulation through reading, attempting to learn and maintaining contact with the world beyond the u n i t as the means to do t h i s . To be able to maintain cognitive a b i l i t i e s can be seen to be c e n t r a l to the maintenance of both i d e n t i t y and self-esteem as dependency increases. For the subjects i n t h i s study cognitive a b i l i t y was the source of t h e i r t r u s t i n themselves, autonomy, competence and r e l a t i o n s h i p s with others and the world around. At the same time reading and subjects' r e l a t i o n s h i p s with t h e i r f a m i l i e s provided a sense of belonging and contact with t h e i r own past, and strengthened and afforded a sense of i d e n t i t y and co n t i n u i t y . 1 23 Obviously p h y s i c a l a b i l i t y i s i n f l u e n t i a l , but whether the a c t i v i t i e s emphasized by the subjects i n t h i s study were p r i m a r i l y related to developmental stage or to the type of people they were i s not c l e a r . This r e l a t i o n s h i p does not appear to be discussed i n the l i t e r a t u r e . Integration The i n t e g r a t i o n phase i s i d e n t i f i e d by a subject's developing perception of r e l o c a t i o n as but one experience i n h i s or her t o t a l l i f e . I t i s therefore dependent upon a sense of i d e n t i t y and continuity, and self-esteem. The outcome of t h i s phase i s that subjects are able to view i n s t i t u t i o n a l i z a t i o n as one event i n a l i f e h i s t o r y rather than a culmination, or the c r i t e r i o n f o r evaluation, of that l i f e . The i n t e g r a t i o n phase i s characterized by subjects' r e f l e c t i o n upon personal h i s t o r y and contribution within a s p e c i f i c c u l t u r a l and h i s t o r i c a l context. The way i n which subjects r e c a l l e d and r e f l e c t e d on t h e i r past l i v e s and the apparent consistency i n a c t i v i t y related to maintaining a sense of s e l f are interpreted, i n t h i s study, as i n d i c a t i v e of subjects' need'to recognize the contribution and meaningfulness of t h e i r l i v e s . This i s consistent with Erikson's (1959) proposition that ego-integration i s the major developmental task of old age. Erikson claims that successful r e s o l u t i o n at this stage gives a sense of meaning and order i n one's l i f e and the universe 124 as opposed to d e s p a i r — t h e idea that one has f a i l e d and does not have time to make alternate choices. For Erikson (1978) ego-integration i s expressed as "the detached yet act i v e concern with l i f e i t s e l f , i n the face of death i t s e l f . . . that maintains and conveys the i n t e g r i t y of the experience i n s p i t e of the decline of bodily and mental functions" (Erikson, p. 25). Although i n d i v i d u a l s feared cognitive decline t h e i r r e i t e r a t i o n that "I w i l l do the best I can" suggested that ego-transcendence (Peck, 1968) had even greater value and s i g n i f i c a n c e f o r them than did phys i c a l or cognitive c a p a c i t i e s . For the e l d e r l y people i n t h i s study, r e f l e c t i o n on "meaning" during t r a n s i t i o n appeared to be directed towards recognizing that the negative connotations of i n s t i t u t i o n a l i z a t i o n r e a l l y have l i t t l e or no meaning within the context of a t o t a l l i f e . I t seemed that they worked to understand that i s was t h e i r l i f e long experience and contribution, rather than the f a c t that they were spending t h e i r l a s t days helpless i n an i n s t i t u t i o n , which determined t h e i r s e l f worth. In the context of t h e i r developing ego-integrity, then, i n s t i t u t i o n a l i z a t o n i s but one inc i d e n t i n a t o t a l l i f e h i s t o r y , and m a s t e r y — l i v i n g l i f e to the extent possible within the s i t u a t i o n — i s relevant only i n so f a r as subjects see that they demonstrate competence i n the adjustments they make. Experience 125 within the extended care unit can not become the basis on which i n d i v i d u a l s evaluate t h e i r l i f e - l o n g c o n t r i b u t i o n . Conclusion The findings of t h i s study suggest that t r a n s i t i o n i n o l d age i s distinguished from t r a n s i t i o n s at other l i f e stages. I t i s suggested that these differences occur as a function of developmental stage and a response to f r a i l t y , and that the a c t i v i t i e s developed i n response to changes i n l a t e r l i f e are those most conducive to maintaining self-esteem and a t t a i n i n g ego-integration. The d i s t i n g u i s h i n g feature of the t r a n s i t i o n described i n t h i s study i s that i n s t i t u t i o n a l i z a t i o n introduced d i s c o n t i n u i t y at a time when those experiencing i t were developmentally oriented to reaffirm, rather than a l t e r , i d e n t i t y and to maintain continuity within t h e i r l i v e s . Central to the success of the i n t e g r a t i o n of i d e n t i t y i s a sense of self-esteem, yet i n s t i t u t i o n a l i z a t i o n i s often accompanied by personal and s o c i a l perception of decreased personal worth and s o c i a l recognition. For i n d i v i d u a l s i n the extended care u n i t i d e n t i t y appeared to be most strongly challenged when t r u s t i n oneself or the environment became questionable or when autonomy was threatened through the i n d i v i d u a l ' s perception of losing c o n t r o l . Yet the opportunity to maintain or develop a p o s i t i v e self-concept during i n s t i t u t i o n a l i z a t i o n i s l i k e l y to be l i m i t e d , p a r t i c u l a r l y i f 1 26 personal and s o c i e t a l values of p r o d u c t i v i t y and independence are maintained by the i n d i v i d u a l and others. A t r a n s i t i o n to i n s t i t u t i o n a l l i v i n g , then, i s a threat to ego-integration i f the challenge to e a r l i e r l i f e resolutions i s such that the i n d i v i d u a l does not have the c a p a c i t i e s , resources or support to ensure p o s i t i v e r e s o l u t i o n at t h i s new l e v e l . The most p o s i t i v e approach to the development of s e l f -esteem and ego-integrity l i e s i n the environmental support of a l l aspects of an i n d i v i d u a l ' s i d e n t i t y , p h y s i c a l capacity and r e f l e c t i o n on and consolidation of p o s i t i v e past experiences. Schlossberg (1981) suggests that " i t i s not the t r a n s i t i o n i t s e l f that i s of primary importance, but rather how that t r a n s i t i o n f i t s within an i n d i v i d u a l ' s stage, s i t u a t i o n , and s t y l e at the time of t r a n s i t i o n " (p. 5). This appears to be c e n t r a l to the consideration of i n s t i t u t i o n a l i z a t i o n and t r a n s i t i o n s of the e l d e r l y . I t can be proposed that the outcome f o r the i n d i v i d u a l depends on the extent to which the process of t r a n s i t i o n can be maintained as congruent with and conducive to the development of ego-integration. 1 27 CHAPTER SIX SUMMARY AND IMPLICATIONS OF THE STUDY This study i d e n t i f i e d how e l d e r l y i n d i v i d u a l s perceived t h e i r t r a n s i t i o n from home to an extended care u n i t and described common features of the t r a n s i t i o n to i n s t i t u t i o n a l l i v i n g . This chapter presents a b r i e f summary of the study and the implications of the findings for nursing. Summary This study examined the experience of i n s t i t u t i o n a l i z a t i o n amongst e l d e r l y subjects. I t was conducted using a convenience sample of f i v e subjects who had been admitted to an extended care u n i t within the previous year. Subjects were interviewed on up to four occasions during the period 6 to 13 months a f t e r admission. A semi-structured interview schedule was used to guide the e a r l y interviews. Data were analysed using the method introduced by Glaser and Strauss (1967) f o r the discovery of grounded theory. From t h i s a conceptualization of the t r a n s i t i o n to i n s t i t u t i o n a l l i v i n g f o r f r a i l e l d e r l y subjects was developed. The t r a n s i t i o n consisted of f i v e phases. The f i r s t phase, one of a n t i c i p a t i o n , encompassed the subjects' acknowledgement of t h e i r need f o r p h y s i c a l assistance i n an i n s t i t u t i o n and preparation f o r that i n s t i t u t i o n a l i z a t i o n . The second phase was termed r e a c t i o n . Once admitted to the extended care u n i t 1 28 subjects experienced f e e l i n g s of loneliness and helplessness a r i s i n g from d i s c o n t i n u i t y i n a l l aspects of t h e i r l i v e s , which r e l o c a t i o n had introduced. During the i n t e r p r e t a t i o n phase subjects worked to develop a coherent perspective of the environment from which to develop coping s t r a t e g i e s conducive to personal c o n t r o l and meeting personal needs within the i n s t i t u t i o n . During the negotiation phase, on the basis of t h e i r understanding of the dynamics of the s i t u a t i o n , subjects developed new sources of personal need s a t i s f a c t i o n which recognized both personal and i n s t i t u t i o n a l resources and c a p a c i t i e s , and were conducive to the development of ego-integration. The way i n which subjects recounted t h e i r experiences and the emphasis they placed on the past as relevant to the kind of people they were and what they d i d within the i n s t i t u t i o n , suggested that subjects saw i n s t i t u t i o n a l i z a t i o n as but one i n c i d e n t i n a l i f e and not as the culmination or the basis of evaluation of that l i f e . The f i n a l i n t e g r a t i o n phase then was one of maintaining i d e n t i t y which enabled each i n d i v i d u a l to incorporate i n s t i t u t i o n a l i z a t i o n i n t o a p o s i t i v e perspective of personal l i f e h i s t o r y . During the t r a n s i t i o n subjects experienced a sense of personal c o n t r o l which varied from phase to phase. As independent s e l f - d i r e c t i n g i n d i v i d u a l s they had f e l t w e ll i n c o n t r o l of t h e i r decisions to relocate and the preparations which 129 were involved. The process of admission allowed f o r l i t t l e c o n t r o l or understanding of what was happening. P o t e n t i a l f o r loss of c o n t r o l was high u n t i l each i n d i v i d u a l was able to explain what went on i n the environment and i t s meaning f o r him or h e r s e l f . Regaining personal c o n t r o l occurred with the assumption of r e s p o n s i b i l i t y f o r deciding what was possible and fo r personal adjustment within the s i t u a t i o n . The i n t e g r a t i o n of a perception of t r a n s i t i o n into self-concept allowed f o r con t r o l of the development of ego-integration. The findings of the study suggest that the t r a n s i t i o n to i n s t i t u t i o n a l l i v i n g experienced by the subjects i n t h i s study d i f f e r s from those described i n other age groups, but may be s i m i l a r to other t r a n s i t i o n s i n o l d age. I t i s suggested that t h i s d i f f e r e n c e occurs as a) a function of development i n old age, b) a concomitant of f r a i l t y , and c) a response to a p a r t i c u l a r environmental s i t u a t i o n . Implications of the Study The implications of the findings of the study are presented to suggest d i r e c t i o n f o r nursing p r a c t i c e , education, and research. Implications f o r Nursing Practice The study began with the assumption that an understanding of the experience of e l d e r l y people during the t r a n s i t i o n to i n s t i t u t i o n a l l i v i n g i s e s s e n t i a l i n the pr o v i s i o n of nursing care of those who may or do require i n s t i t u t i o n a l i z a t i o n . 1 30 The findings of the study suggest e l d e r l y subjects entering an extended care u n i t have common experiences and common responses to those experiences. The i n t e r p r e t a t i o n of these experiences and responses suggests implications f o r nursing p r a c t i c e i n four main areas. These are: 1 . developmental theory as a basis for nursing p r a c t i c e , 2. promoting ego-integration, 3. maintaining ego-integration, 4. enhancing ego-integration. Developmental Theory as a Basis f o r Nursing Practice T y p i c a l l y p r o f e s s i o n a l p r a c t i c e i n the health f i e l d i s problem oriented and direc t e d towards the a l t e r a t i o n of a s p e c i f i c c l i e n t condition or s i t u a t i o n . The findings of th i s study suggest that emphasis on promoting, maintaining and enhancing ego-integration may be more e f f e c t i v e i n terms of the o v e r a l l health of e l d e r l y c l i e n t s . However t h i s requires a reo r i e n t a t i o n of the structure within which nursing i s pr a c t i c e d . At present philosophies and p o l i c y statements which guide the care of 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 propose m u l t i d i s c i p l i n a r y care and r e f l e c t themes and assumptions that emphasize objectives of care such as a c t i v i t y , stimulation, and independence (Evers, 1981). To date because of the organization of health care, the medical cause-cure oriented model often continues to provide the underlying organization of the care of 131 e l d e r l y people. In p r a c t i c e , without an o v e r a l l goal or d e f i n i t i o n of the c r i t e r i a of health amongst e l d e r l y people, the objectives i d e n t i f i e d above may become goals i n themselves and even, on occasion, c o n f l i c t with each other i n t h e i r implementation and/or c o n f l i c t with the d i r e c t i o n provided by the medical model. Care organized on a cause-cure basis emphasizes a subject's "problem" p h y s i c a l c a p a c i t i e s and dependency status and dependency may become unnecessarily pervasive i n s p e c i f i c areas of a subject's l i f e . At the same time dependency may increase not only because the subject accepts s o c i e t a l attitudes about dependency, but also because care i s organized p r i m a r i l y to deal with p h y s i c a l "problems". The findings of t h i s study suggest that i n the care of e l d e r l y c l i e n t s the outcome of nursing intervention should be defined as, or be synonymous with, ego-i n t e g r a t i o n . Nursing care f o r e l d e r l y c l i e n t s should be based on the assumptions that: 1. Ego-integration i s the goal of development i n o l d age and thus the ultimate goal of nursing care f o r e l d e r l y c l i e n t s i n a l l s e t t i n g s . 2. Ego-integration i s conducive to e l d e r l y people a c t i v e l y constructing t h e i r own r e a l i t i e s and d e f i n i t i o n s of s e l f . 132 3. Development does not occur i n a vacuum; the nature of the r e l a t i o n s h i p between the developing person and the environment may be conducive or i n h i b i t i n g to development. 4. E l d e r l y c l i e n t s at whatever l e v e l of capacity can contribute to the d i r e c t i o n and performance of personal a c t i v i t y . Enhancing f e e l i n g s of personal t r u s t , autonomy and competence r e l a t i v e to personal capacity i s conducive to development. 5. The r o l e of the environment i s to complement the c l i e n t i n the performance of the a c t i v i t i e s of d a i l y l i f e and development. These assumptions would provide a more f u n c t i o n a l and e f f e c t i v e d i r e c t i v e i n the care of e l d e r l y c l i e n t s than present day approaches. The acceptance of developmental goals subordinates other more s p e c i f i c goals such as a c t i v i t y and stimulation to the extent that they contribute to ego-integration f o r an i n d i v i d u a l . This enables the planning of care which does not n e c e s s a r i l y emphasize p h y s i c a l care and dependency, or aim f o r a c t i v i t y or independence, but seeks to enhance outcomes of l i f e - l o n g development which are conducive to ego-integration. S p e c i f i c nursing interventions which are conducive to development i n each of the phases of t r a n s i t i o n among e l d e r l y subjects are determined by the s p e c i f i c developmental c r i s i s which i s reintroduced. They are dire c t e d towards promoting, maintaining and enhancing ego-integration. 133 Promoting Ego-Integration The findings of t h i s study suggest that interventions which promote development are d i r e c t e d towards minimizing the negative e f f e c t s of t r a n s i t i o n through ensuring that developmental c r i s e s are reworked i n the context of ego-integration rather than reintroduced. For example, recognizing that a firm sense of t r u s t and i d e n t i t y i s necessary to successful ego-integration would d i r e c t the nurse to ensure that a c l i e n t exercises maximum personal c o n t r o l and maintains a sense of personal c o n t i n u i t y and i d e n t i t y within a r e l i a b l y responsive environment. Energy resources decrease with o l d age. Promoting ego-integration, then, requires that the nurse ensures that the p r i o r i t y use of energy i s given to a c t i v i t i e s i n areas of maintaining contact with the outside world and experiencing competence and thus a sense of i d e n t i t y and c o n t i n u i t y . Maintaining Ego-Integration With aging coping s t r a t e g i e s which are able to meet needs related to maintaining ego-integration must be maintained or developed. The findings of t h i s study suggest that to do t h i s the nurse must have s k i l l s which a s s i s t the c l i e n t to: 1. define and accept values which are supportive to s e l f -esteem i n the new s i t u a t i o n , 2. develop coping s t r a t e g i e s which provide f o r personal need s a t i s f a c t i o n . 134 Subjects i n t h i s study predominately used cognitive coping s t r a t e g i e s which Bergston (1974) claims develop as a natural function of aging i n a supportive environment. The findings of t h i s study suggest that cognitive s t r a t e g i e s are also more fu n c t i o n a l than others i n o l d age. E f f e c t i v e nursing intervention with f r a i l e l d e r l y subjects i s c l e a r l y based i n a sound understanding of coping approaches used by e l d e r l y people and how and when these can be developed or promoted. Enhancing Ego-integration The p r o v i s i o n of s i t u a t i o n s which provide opportunities f o r the c l i e n t to demonstrate personal competence enhances ego-i n t e g r a t i o n . The assessment of personal competence, however, must be r e l a t i v e to the subject's capacities and not made on the basis of comparison with the capacity and a b i l i t i e s of others. L i t e r a t u r e suggests that ego-integration i s not only enhanced through a c t i v i t i e s conducive to self-esteem but also a) i n experiences which introduce opportunities to r e f l e c t upon past l i f e and achievement, and b) through environmental and subjective v a l i d a t i o n of the person as worthy and having contributed to the l i f e of the times. The subjects i n t h i s study c o n s i s t e n t l y reintroduced aspects of t h e i r l i f e experiences. This suggested the importance of gaining some perspective of the l i f e they had l i v e d and introduced the i n t e g r a t i o n phase. L i t e r a t u r e suggests that 135 reminiscence provides the basis f o r the i n t e g r a t i o n of past l i f e (Butler, 1974). I t o f f e r s the subject an opportunity to integrate the past i n a coherent way and to come to terms with past problems and d i f f i c u l t i e s . Reminiscence, the r e c a l l i n g of the past and working to deepen and maintain a sense of co n t i n u i t y of s e l f and self-esteem, i s generally seen to be more e f f e c t i v e i n s o c i a l i n t e r a c t i o n with i n d i v i d u a l s who are trusted by the i n d i v i d u a l and can convey t h e i r i n t e r e s t i n him or her. Reminiscence can be enhanced i f i t i s structured and guided. Implications f o r Nursing Education T r a d i t i o n a l l y nursing education and p r a c t i c e have implied that the care of e l d e r l y c l i e n t s requires "basic" nursing s k i l l s d i r e c t e d towards p h y s i c a l care and comfort. More recent approaches to the care of increasing numbers of e l d e r l y c l i e n t s tend to emphasize mental health and suggest forms of counselling as a c e n t r a l need of e l d e r l y people (Sherman, 1981). The findings of t h i s study emphasize the complexity and h o l i s t i c nature of the experience of e l d e r l y people, suggesting that nursing care must be approached from an e c o l o g i c a l perspective. This nursing care i s n e c e s s a r i l y based i n highly developed i n t e l l e c t u a l s k i l l s and p r a c t i c a l approaches, both developed i n education and experience and applied i n response to s p e c i f i c c l i e n t s i t u a t i o n s . The implications of t h i s study f o r nursing education r e l a t e not only to the content and presentation of any course related to 136 the care of e l d e r l y c l i e n t s but also to the t o t a l nursing curriculum as context f o r that course. To enable beginning p r a c t i t i o n e r s to provide adequate nursing care f o r e l d e r l y c l i e n t s a nursing programme must recognize: a) the value of care independent of cure, b) the relevance of the c l i e n t ' s subjective experience as a basis f o r planning nursing care, and c) the implications of solving patient problems as opposed to supporting c l i e n t s i n the use of problem-solving approaches. Within t h i s context s p e c i f i c learning experiences must be designed to develop i n the student: a) personal values which extend beyond those of independence and p r o d u c t i v i t y , b) recognition of e l d e r l y c l i e n t s as s i g n i f i c a n t i n d i v i d u a l s despite d e c l i n i n g capacities and the p r e v a i l i n g a t t i t u d e s , values and p o l i c i e s of society, c) highly developed communication s k i l l s and the a b i l i t y to use these within a r e l a t i o n s h i p with an i n d i v i d u a l who may have l i m i t e d resources to contribute to that r e l a t i o n s h i p , d) understanding of development at a l l stages of the l i f e c y c l e . e) understanding of coping s t r a t e g i e s and t h e i r development, 1 37 f) understanding of the range of e f f e c t i v e coping st r a t e g i e s amongst e l d e r l y people, and nursing s t r a t e g i e s of promoting, maintaining and enhancing coping and development, and g) the confidence to use creative approaches i n the development and implementation of nursing care with e l d e r l y c l i e n t s . Implications f o r Nursing Research The purpose of t h i s study was to i d e n t i f y how e l d e r l y i n d i v i d u a l s perceive t h e i r t r a n s i t i o n from home to an i n s t i t u t i o n . The findings of the study and the experience of the researcher with i n s t i t u t i o n a l i z e d e l d e r l y subjects suggest d i r e c t i o n f o r furt h e r questions about i n s t i t u t i o n a l i z a t i o n amongst e l d e r l y subjects and introduce questions related to how and with whom research should be c a r r i e d out. The implications f o r nursing research, therefore are presented as: 1. the d e f i n i t i o n of the e l d e r l y population, 2. t r a n s i t i o n amongst e l d e r l y i n d i v i d u a l s , and 3. the effectiveness of research approaches used with f r a i l e l d e r l y subjects. The D e f i n i t i o n of the E l d e r l y Population In t h i s study, consistent with l i t e r a t u r e (Denton & Spencer, 1980; Mi n i s t r y of Supply Services, 1982; Schwenger & Gross, 1981), the term e l d e r l y was defined as over 65 years of 138 age. However, the subjects i n the study were aged from 7 6 - 8 4 with an average age of 81.5 years. This average age r e f l e c t e d the age of the population i n the u n i t i n which the study was ca r r i e d out (average age 82 years) and i n extended care units throughout the province (Ministry of Health, 1981). At the same time the assumption that people over 65 constitute a homogeneous population i s questionable. Further research needs to be directed towards: 1. a r e c l a s s i f i c a t i o n of the e l d e r l y population which recognizes the d i s t i n c t c h a r a c t e r i s t i c s of the groups within i t , 2. the examination and determination of the d i s t i n c t c h a r a c t e r i s t i c s , p o t e n t i a l , a b i l i t i e s and needs of each group, and 3. the c l a r i f i c a t i o n of concepts of development, t h e i r expression i n populations over 65 years of age, and the e f f e c t s of f r a i l t y , and s o c i e t a l responses to f r a i l t y , on development. T r a n s i t i o n Amongst E l d e r l y Subjects The findings of t h i s study represent the response of a p a r t i c u l a r group of people i n a s p e c i f i c environmental s i t u a t i o n . A l l general and s p e c i f i c concepts related to t r a n s i t i o n and the phases of t r a n s i t i o n amongst e l d e r l y subjects require further examination and te s t i n g i n a v a r i e t y of settings and with people of d i f f e r i n g c a p a c i t i e s . Further research i s required to: 139 1. develop, c l a r i f y and define the concepts introduced and t h e i r relevance and implications i n the experience of e l d e r l y subj ects, 2. examine the v a l i d i t y of the concept of t r a n s i t i o n . This study examined the experience of a group of people who were able to gain mastery within an extended care u n i t . Whether the concept developed i s able to explain the experience of other subjects requires further t e s t i n g . In the study the complexity and h o l i s t i c nature of the subjects' experience became apparent. To provide a sound basis fo r nursing p r a c t i c e the r e l a t i o n s h i p s , p a r t i c u l a r l y between s p e c i f i c p h y s i c a l , developmental and environmental factors require further c l a r i f i c a t i o n . This study suggests key r e l a t i o n s h i p s f o r fur t h e r study are: 1. f r a i l t y , and i t s manifestations and r e l a t i o n s h i p s to behaviour, p a r t i c u l a r l y coping behaviours, 2. coping amongst e l d e r l y subjects and i t s r e l a t i o n s h i p to development and s p e c i f i c environmental conditions, and 3. learning amongst e l d e r l y subjects as a basis f o r p o s s i b l y developing new coping behaviours within changing p h y s i c a l and environmental conditions. Research with f r a i l e l d e r l y subjects. The experience of carrying out t h i s study emphasized the lack of research related to f r a i l e l d e r l y subjects. Yet research with subjects over 80 and the 140 e l d e r l y becomes i n c r e a s i n g l y urgent as the numbers of these people increase and r a i s e new p h i l o s o p h i c a l , s p i r i t u a l , moral and p r a c t i c a l questions. Present concepts of independence, dependence, c o n t r o l and coping need to be rethought i n the l i g h t of the experience of a new and increasing f r a i l e l d e r l y population, and as a basis f o r research which emphasizes the possible i n d i v i d u a l and s o c i e t a l p o t e n t i a l of t h i s group. Some writers suggest that p r a c t i c a l considerations have li m i t e d research with f r a i l e l d e r l y subjects and discuss the d i f f i c u l t i e s involved (Reich, 1978; S t r i e b , 1983). However the perspective of these two writers i s that of a t r a d i t i o n a l q u a n t i t a t i v e approach with goals of c o n t r o l and p r e d i c t i o n . The experience of conducting t h i s study suggested that a l l questions which a r i s e i n r e l a t i o n to the conduct of research such as determining competence, obtaining subjects and interviews, were emphasized with f r a i l e l d e r l y subjects. However the need f o r research i n t h i s area, d i r e c t e d e s p e c i a l l y towards theory development, means that ways to overcome these d i f f i c u l t i e s must be considered, and adaptions to t r a d i t i o n a l approaches which recognize the capacities and needs of f r a i l e l d e r l y subjects must be made. This appears possible i f : a) a l l aspects of research methodology, p a r t i c u l a r l y data c o l l e c t i o n , are f l e x i b l e and recognize subject c a p a c i t i e s , energy resources and i n t e r e s t . 141 b) considerable f l e x i b l e time i s allowed f o r the development of t r u s t with subjects. Although Wilson (1983) suggests that the " l i f e , world and frames of meaning of researcher and p r a c t i t i o n e r are very d i f f e r e n t " (p. 151) the experience with t h i s study suggests, that at the very l e a s t , these roles must be r e c i p r o c a l . I d e a l l y they would be played by the same i n d i v i d u a l . The researcher may be able to provide f r e s h perspectives which recognize c l i e n t perception and experience while questions which are relevant to care of f r a i l e l d e r l y subjects are more l i k e l y to be asked by those c l o s e l y associated with such people. The experience with t h i s study suggests that nurses i n c l i n i c a l p r a c t i c e with 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 are i n the best p o s i t i o n to observe behaviours which suggest questions, and to be a v a i l a b l e to make observations and c o l l e c t data when they are a v a i l a b l e . At the same time a p o s i t i v e r e l a t i o n s h i p with a c l i e n t gives i n s i g h t i n t o the experience of that person and may introduce new areas, p a r t i c u l a r l y i n r e l a t i o n to f r a i l t y , which require exploration. 142 Footnotes 1The c r i t e r i a f o r admission to an extended care u n i t i n B r i t i s h Columbia include: a person who 1. i s not independently mobile, and therefore (a) i s unable to trans f e r without the p h y s i c a l assistance of another person . . . (b) i s unable to walk without the p h y s i c a l assistance of another person over a distance of approximately 10-15 feet of c l e a r space . . . (c) i s unable to use a wheelchair independently without the p h y s i c a l assistance of another person . . . 2. Requires f o r medical reasons a program continuously and p r o f e s s i o n a l l y supervised over each period, which cannot be provided i n a lesser type of care. (Hospital Programs, B.C. Min i s t r y of Health, 1984, p. 3.) ^This d e f i n i t i o n of t r a n s i t i o n recognizes recent t h e o r e t i c a l approaches to development i n adulthood and old age (George 1980) . Schlossberg (1981) suggests that any t r a n s i t i o n i s characterized by d i s c o n t i n u i t y i n a person's l i f e . D i s c o n t i n u i t y i s p r i m a r i l y defined by the i n d i v i d u a l and/or by s o c i a l concensus. Transitions r e s u l t i n : (a) the u t i l i z a t i o n of patterns of s o c i a l , psychological or b i o l o g i c a l behaviour which may or may not be new and/or e f f e c t i v e . (b) new ways of the i n d i v i d u a l s viewing himself, (c) the development of new r e l a t i o n s h i p s within the s i t u a t i o n . Each t r a n s i t i o n brings with i t the opportunity f o r psychological growth and/or the danger of psychological d e t e r i o r a t i o n (Moos & Tsu, 1976). 144 References A l d r i c h , C , & Mendkoff, E. (1961). 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Psychological and psychological correlates of l i f e s a t i s f a c t i o n as a function of r e s i d e n t i a l c o n s t r a i n t s . Journal of Gerontology, 31, 89-98. Wright, B. (1983). Physical d i s a b i l i t y : A psychosocial approach. New York: Harper & Row. Yawney, B., & Slover, D. (1979). Relocation of the e l d e r l y . In A. Monk. (Ed.), The age of aging: A reader i n s o c i a l  gerontology (pp. 164-178). Buffalo, NY: Prometheus. Young, M., & Wilmott, P. (1957). Family and kinship i n East  London. London: Routledge and Kegan Paul. APPENDIX A Consent to P a r t i c i p a t e i n Research Study I volunteer to take part i n the research study t i t l e d "The T r a n s i t i o n to I n s t i t u t i o n a l L i v i n g : The Experience of E l d e r l y People" to be conducted by N a t a l i A l l e n . I understand that the study seeks to f i n d out how I, and others, have experienced the t r a n s i t i o n to i n s t i t u t i o n a l l i v i n g and what t h i s has meant to us. I have discussed the study with the researcher and have received a copy of the conditions under which I have agreed to take part i n the study. My questions have been answered. Signed 161 APPENDIX B CONDITIONS OF PARTICIPATION IN THE RESEARCH STUDY t i t l e d "The T r a n s i t i o n to I n s t i t u t i o n a l L i v i n g : The Experience of E l d e r l y People" 1. The subject may withdraw from the study at any time. He/she need only to t e l l the researcher, the head nurse, or any person who w i l l inform the head nurse of his/her wishes. 2. Each interview w i l l be conducted at a time and place s u i t a b l e to the subject. 3. Interviews w i l l be h a l f to one hour i n length, and up to f i v e interviews may be conducted. 4. An interview may be terminated by the subject at any time. 5. During an interview the subject i s free to decline to discuss any topic or aspect of his/her experience. 6. If the subject decides to withdraw from the study or terminate an interview, no explanation i s necessary, or w i l l be requested. 7. Interviews w i l l be tape recorded and the tapes transcribed. 8. Ma t e r i a l obtained during an interview w i l l be c o n f i d e n t i a l to the researcher and the two members of the committee supervising the research. 9. Both tapes and t r a n s c r i p t s w i l l be destroyed on completion of the research report. 162 10. No information about the subject's i d e n t i t y w i l l be given under any circumstances. 11. P a r t i c i p a t i o n i n the study w i l l not influence the care the subject receives. 12. If information which i s shared, i n the researcher's opinion indicates a need f o r consultation with health or other s e r v i c e s , no reference w i l l be made without discussion with, and d i r e c t i o n by the subject. 163 APPENDIX C Interview Guide C l i e n t records w i l l be examined before the f i r s t interview to provide background with which to enter the interview. The f i r s t interview w i l l be directed towards the researcher (a) getting to know the subject and c o l l e c t i n g some demographic data, (b) developing the subject's t r u s t and confidence i n h i s experience as of i n t e r e s t to the researcher, and (c) introducing the subject to the technology of audio-taping and developing confidence with i t . Areas to be addressed during the interviews w i l l be: The Subject 1. Who i s t h i s person? (Includes age, sex, marital status and ethnic o r i g i n . ) 2. How, where has he/she l i v e d and what has he/she done during his/her l i f e t i m e ? Planning f o r Relocation 1. Why was the d e c i s i o n to l i v e i n an i n s t i t u t i o n made? When? By Whom? 2. How d i d the subject f e e l about i t ? Moving to the I n s t i t u t i o n 1. What were the subject's expectations of i n s t i t u t i o n a l l i v i n g ? 164 2. What were the f i r s t impressions of l i v i n g i n an i n s t i t u t i o n ? L i v i n g i n an I n s t i t u t i o n 1. To what extent have d a i l y routines altered? 2. How does the subject f e e l about this? 3. What goals does the subject have f o r l i v i n g i n the i n s t i t u t i o n ? 4. To what extent have these goals been achieved? 

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