Open Collections

UBC Theses and Dissertations

UBC Theses Logo

UBC Theses and Dissertations

An evaluation of the Buddy/home Care Program : a palliative care program operated by AIDS Vancouver Leaney, Alison Ann 1990

Your browser doesn't seem to have a PDF viewer, please download the PDF to view this item.

Item Metadata

Download

Media
831-UBC_1990_A5 L42.pdf [ 8.33MB ]
Metadata
JSON: 831-1.0098001.json
JSON-LD: 831-1.0098001-ld.json
RDF/XML (Pretty): 831-1.0098001-rdf.xml
RDF/JSON: 831-1.0098001-rdf.json
Turtle: 831-1.0098001-turtle.txt
N-Triples: 831-1.0098001-rdf-ntriples.txt
Original Record: 831-1.0098001-source.json
Full Text
831-1.0098001-fulltext.txt
Citation
831-1.0098001.ris

Full Text

AN EVALUATION OF THE BUDDY/HOME CARE PROGRAM, PALLIATIVE CARE PROGRAM OPERATED BY AIDS VANCOUVER By ALISON ANN LEANEY B.S.W., The U n i v e r s i t y of B r i t i s h Columbia, 1982 A THESIS COMPLETED IN PARTIAL FULFILLMENT OF THE REQUIREMENTS FOR THE DEGREE OF MASTER OF SOCIAL WORK i n THE FACULTY OF GRADUATE STUDIES School of S o c i a l Work We accept t h i s t h e s i s as conforming t o the r e q u i r e d standard THE UNIVERSITY OF BRITISH COLUMBIA A p r i l 1990 (c) A l i s o n Ann Leaney, 1990 In presenting this thesis in partial fulfilment of the requirements for an advanced degree at the University of British Columbia, I agree that the Library shall make it freely available for reference and study. I further agree that permission for extensive copying of this thesis for scholarly purposes may be granted by the head of my department or by his or her representatives. It is understood that copying or publication of this thesis for financial gain shall not be allowed without my written permission. Department of c;nr ia1 Wnrk - Hrarinare Studies The University of British Columbia Vancouver, Canada n a t_ A p r i l 12, 1990 DE-6 (2/88) ABSTRACT A c q u i r e d I m m u n o d e f i c iency Syndrome (AIDS) i s p r e s e n t i n g a r e a l c h a l l e n g e to our Canadian h e a l t h care system. As the numbers of i n f e c t e d grow, the g r e a t e r the r e a l i z a t i o n t h a t h e a l t h care and s o c i a l s e r v i c e s as they c u r r e n t l y e x i s t , are unable to adequately address the o verwhelming need. With a s p e c i a l emphasis on h o s p i c e / p a l l i a t i v e c a r e s e r v i c e s , which a r e seen as e s s e n t i a l and very a p p r o p r i a t e i n the care of persons with AIDS (PWAs) , t h i s study seeks to e v a l u a t e one such s e r v i c e - the Buddy/Home Care Program o f f e r e d by AIDS Vancouver - as a means of improving t h i s program and i l l u s t r a t i n g the need to e s t a b l i s h others t o achieve an i n t e g r a t e d h o s p i c e / p a l l i a t i v e care s e r v i c e . To e v a l u a t e the e f f e c t i v e n e s s of the Buddy/Home Care Program, f o u r PWA S o c i a l Networks composed o f f o u r Persons With AIDS, f i v e of t h e i r buddies, t h r e e Home Care V o l u n t e e r s , two Buddy/Home Care C l i e n t Care Case Managers, and f o u r Outside Agency A f f i l i a t e d Persons, were i n t e r v i e w e d u s i n g an i n t e r v i e w guide approach. The i n t e r v i e w g u i d e was d e s i g n e d t o t a p t h e i n d i v i d u a l e xperiences of everyone a s s o c i a t e d with the Program, as w e l l as t h e i r p e r c e p t i o n s of the Program's s t r e n g t h s and weaknesses. L i m i t a t i o n s i n t h e s t u d y d e s i g n and implementation arose from sampling, incomplete data, and i i r e s e a r c h e r - r e l a t e d i s s u e s . Data a n a l y s i s f o l l o w e d the dimensional model of the G l a s e r and Strauss grounded theory. The r e s u l t s are p r e s e n t e d u t i l i z i n g p e r t i n e n t s o c i a l network c h a r a c t e r i s t i c s as a framework. F i r s t , each of the f o u r PWA S o c i a l Networks are p r e s e n t e d and d e s c r i b e d i n r e l a t i o n t o s i z e and d e n s i t y . The networks vary i n s i z e from 12 t o 25, and are c h a r a c t e r i z e d by low l e v e l s of d e n s i t y . Since the l i t e r a t u r e i n d i c a t e s t h a t t h e r e i s a p o s i t i v e a s s o c i a t i o n between network s i z e and h e a l t h s t a t u s , i t f o l l o w s t h a t the PWA with 12 i n d i v i d u a l s i n h i s s o c i a l network would have the lowest h e a l t h s t a t u s , while the PWA with 25 would have the h i g h e s t . But t h i s has not been found t o be the case i n t h i s study. What i s a l s o u n c l e a r , i s whether l a r g e r s i z e d networks cause improved h e a l t h , or whether h e a l t h s t a t u s d e t e r m i n e s network s i z e . Although low d e n s i t y i s f a r from the i d e a l p r e s c r i b e d by the h o s p i c e / p a l l i a t i v e care approach, the l i t e r a t u r e i s c o n f l i c t i n g on t h e a s s o c i a t i o n between d e n s i t y and h e a l t h s t a t u s , s u g g e s t i n g t h a t t h i s low d e n s i t y i s not n e c e s s a r i l y u n d e s i r a b l e . Second, an e x a m i n a t i o n o f t h e v o l u n t e e r - c l i e n t r e l a t i o n s h i p subsystems r e v e a l s t h a t the r e l a t i o n s h i p s f u l f i l l the C l i e n t Care Case Managers e x p e c t a t i o n s , i n t h a t t h e r e l a t i o n s h i p s between v o l u n t e e r s and c l i e n t s range i n i n t e n s i t y from b e i n g v o l u n t e e r - c l i e n t , to f r i e n d - f r i e n d , t o p a r e n t - c h i l d o r i e n t e d , and are c h a r a c t e r i z e d by a wide v a r i e t y of emotional, i n f o r m a t i o n a l , i n s t r u m e n t a l , and co m p a n i o n s h i p s u p p o r t f u n c t i o n s c o n s i s t e n t w i t h t h e s e r e l a t i o n s h i p dynamics. And t h i r d , an examination of the v o l u n t e e r - a g e n c y r e l a t i o n s h i p subsystems r e v e a l s h i g h l e v e l s of a p p r e c i a t i o n of i n f o r m a t i o n a l support p r o v i d e d by the agency through i t s v o l u n t e e r t r a i n i n g , r e l a t i v e l y i n f r e q u e n t c o n t a c t between v o l u n t e e r s and C l i e n t Care Case Managers, v a r i a b l e experiences of emotional support r e c e i v e d from C l i e n t Care Case Managers, minimal amounts of emotional support r e c e i v e d from the Buddy Support Group, and some c o n f u s i o n about which s t a f f members are r e s p o n s i b l e f o r v o l u n t e e r s p r e - and post-assignment. Recommendations designed t o improve v o l u n t e e r - c l i e n t and volunteer-agency r e l a t i o n s h i p s i n the Buddy/Home Care Program, as w e l l as o t h e r s d e s i g n e d t o promote t h e e s t a b l i s h m e n t o f an i n t e g r a t e d C a n a d i a n h o s p i c e / p a l l i a t i v e c a r e s e r v i c e a r e p r e s e n t e d i n c o n c l u s i o n . i v TABLE OF CONTENTS Page ABSTRACT i i LIST OF TABLES v i i i LIST OF FIGURES i x ACKNOWLEDGMENTS x INTRODUCTION 1 CHAPTER ONE: THE NEED FOR EFFECTIVE HOSPICE/ PALLIATIVE CARE PROGRAMMING FOR PEOPLE WITH AIDS 4 - The Incidence of AIDS and HIV I n f e c t i o n 4 - H o s p i c e / P a l l i a t i v e Care and I t s A p p l i c a t i o n t o People With AIDS . 7 - The Philosophy of Hospice/ P a l l i a t i v e Care 7 - The Key Components of H o s p i c e / P a l l i a t i v e Care 9 - The Systemic O r i e n t a t i o n of the H o s p i c e / P a l l i a t i v e Care Approach 10 - Can PWAs B e n e f i t From H o s p i c e / P a l l i a t i v e Care? 16 - F e d e r a l / P r o v i n c i a l H o s p i c e / P a l l i a t i v e Care P o l i c i e s and R e s u l t a n t Programs 17 - F e d e r a l Government Hospice/ P a l l i a t i v e Care P o l i c i e s i n General 18 - F e d e r a l Government Hospice/ P a l l i a t i v e Care P o l i c i e s f o r PWAs 20 - R e s u l t a n t Programs Canada-Wide 26 - B.C. Government Hospice/ P a l l i a t i v e Care P o l i c i e s i n General and S p e c i f i c a l l y f o r PWAs 2 9 - Vancouver C i t y Hospice/ P a l l i a t i v e Care P o l i c y f o r PWAs 38 - R e s u l t a n t Programs i n the P r o v i n c e of B.C. 39 - Summary - The R a t i o n a l e of t h i s Study 51 v CHAPTER TWO: RESEARCH DESIGN AND METHODOLOGY 53 - A Review of the L i t e r a t u r e 53 - The Sample 56 - The Interviews and the Interview Tool 58 - The Data A n a l y s i s 62 - Summary 67 CHAPTER THREE: A DESCRIPTION AND AN ANALYSIS OF THE FOUR PWA SOCIAL NETWORKS 69 - A D e s c r i p t i o n of the Four PWA S o c i a l Networks 69 - An A n a l y s i s of the Four PWA S o c i a l Networks 85 - Range or S i z e 88 - D e n s i t y 88 - Summary 93 CHAPTER FOUR: A DESCRIPTION AND AN ANALYSIS OF THE BUDDY/HOME CARE VOLUNTEER-PWA CLIENT SUBSYSTEM DYADS 89 - Agency E x p e c t a t i o n s 95 - The R e a l i t i e s of V o l u n t e e r - C l i e n t R e l a t i o n s h i p s 100 - The S t r u c t u r a l Network C h a r a c t e r -i s t i c of Frequency 100 - I n t e r a c t i o n a l and F u n c t i o n a l Network C h a r a c t e r i s t i c s 104 - Content and I n t e n s i t y 105 - R e c i p r o c i t y 114 - F u n c t i o n a l C h a r a c t e r i s t i c s 115 - Esteem Support 116 - I n f o r m a t i o n a l Support 118 - Instrumental Support 120 - Companionship Support 122 - M o t i v a t i o n a l Support 124 - Summary 124 CHAPTER FIVE: A DESCRIPTION AND AN ANALYSIS OF THE BUDDY/HOME CARE VOLUNTEER-AGENCY SUBSYSTEM 127 - Frequency 127 - R e c i p r o c i t y 129 - Esteem Support 136 - I n f o r m a t i o n a l Support 145 - Content 14 9 - Summary 153 v i CHAPTER SIX: SUMMARY AND RECOMMENDATIONS 155 - Summary and Recommendations With Regard t o the Buddy/Home Care Program 156 - V o l u n t e e r S e l e c t i o n 156 - V o l u n t e e r T r a i n i n g 158 - The Matching of V o l u n t e e r s and C l i e n t s 159 - The Dynamics and A c t i v i t i e s O c c u r r i n g i n the R e l a t i o n s h i p s 160 - The Support and S u p e r v i s i o n of V o l u n t e e r s 165 - Summary and Recommendations With Regard t o T h e o r e t i c a l and P o l i c y Issues 173 - T h e o r e t i c a l Issues Encountered 173 - P o l i c y Issues Encountered 176 - Summary 178 REFERENCES 17 9 APPENDICIES 184 A A Sample L e t t e r of I n i t i a l Contact 184 B A Sample of the Consent f o r C o n t a c t i n g Members of Support *" Network Form 18 6 C A Sample "Topics of I n t e r e s t " Interview Guide 187 D A Sample of the Interview Guide I n c l u d i n g Probes f o r Researcher's Use. 188 v i i LIST OF TABLES Page Table I: I n d i v i d u a l s Interviewed From Each of the Four S o c i a l Networks 59 Table I I : R a t i o s Expressed as Percentages of T o t a l Number of I n t e r a c t i o n s Between Members of S o c i a l Networks t o the T o t a l P o s s i b l e Number of I n t e r a c t i o n s 89 v i i i LIST OF FIGURES F i g u r e 1: The I d e a l H o s p i c e / P a l l i a t i v e Care S e r v i c e System F i g u r e 2: Second Order Codes From the F i r s t Ten Interviews F i g u r e 3: A Com p i l a t i o n of PWA S o c i a l Network One As I d e n t i f i e d By A l l Interviewed F i g u r e 4: A Compil a t i o n of PWA S o c i a l Network Two As I d e n t i f i e d By A l l Interviewed F i g u r e 5: A Compil a t i o n of PWA S o c i a l Network Three As I d e n t i f i e d By A l l Interviewed F i g u r e 6: A Compil a t i o n of PWA S o c i a l Network Four As I d e n t i f i e d By A l l Interviewed F i g u r e 7: A H y p o t h e t i c a l Continuum Repre-s e n t i n g the Emotional I n t e n s i t y of the R e l a t i o n s h i p s Between Buddy/Home Care V o l u n t e e r s and PWA C l i e n t s F i g u r e 8: Common Esteem Support F u n c t i o n s Present i n the R e l a t i o n s h i p s F i g u r e 9: Common I n f o r m a t i o n a l Support Fu n c t i o n s Present i n the R e l a t i o n s h i p s F i g u r e 10: Common Instrumental Support F u n c t i o n s Present i n the R e l a t i o n s h i p s F i g u r e 11: Common Companionship Support F u n c t i o n s Present i n the R e l a t i o n s h i p s F i g u r e 12: Common M o t i v a t i o n a l Support Fu n c t i o n s Present i n the R e l a t i o n s h i p s Page 11 65 75 79 81 83 106 117 119 121 123 125 ix ACKNOWLEDGMENTS There are so many people I would l i k e t o take t h i s o p p o r t u n i t y t o thank! D i r e c t l y r e l a t e d t o conducting the re s e a r c h , I would l i k e t o acknowledge the time and thought c o n t r i b u t e d by a l l 18 c a r i n g and committed i n d i v i d u a l s who agreed t o be i n t e r v i e w e d . In a d d i t i o n , w i t h o u t a s s i s t a n c e from Mi c h a e l Welsh and E l a i n e Smith, and support from N i c h o l a s P h i l l i p s at AIDS Vancouver, t h i s r e s e a r c h p r o j e c t c o u l d not have taken p l a c e . The l a c k of w r i t t e n h i s t o r i c a l and p o l i c y m a t e r i a l about h o s p i c e / p a l l i a t i v e care i n B r i t i s h Columbia and Canada, n e c e s s i t a t e d t h a t I i n t e r v i e w t h e f o l l o w i n g e x p e r t s : Kevin Brown and David Morgan of the Persons With AIDS C o a l i t i o n , Jean Budworth of the Richmond Hospice Program, Dr. J a c q u e l i n e F r a s e r o f t h e B.C. H o s p i c e / P a l l i a t i v e Care A s s o c i a t i o n , Susan Hogman of the Li o n s Gate H o s p i t a l P a l l i a t i v e Care U n i t , Judy K r u e c k l of the AIDS Care Team at St. Paul's H o s p i t a l , P h y l l i s Hood o f t h e C a n a d i a n C a n c e r S o c i e t y , B r i a n P e e l o f AIDS Vancouver, and Dr. Michael Rekart of the P r o v i n c i a l AIDS A d v i s o r y Committee. With r e g a r d to the p r o j e c t o v e r a l l , the support, encouragement, and s c h o l a r l y advice c o n t r i b u t e d by my a d v i s o r s , Drs. Nancy Waxier-Morrison, C h r i s t i n e McNiven, and D e n n i s Guest has been i n v a l u a b l e . F o r t h e i r seemingly u n l i m i t e d p a t i e n c e , understanding, l o v e , and b e l i e f i n me, I thank my p a r t n e r Jack Norton, my parents Jack and Anne Leaney, and my b r o t h e r B r a d f o r d Leaney. x INTRODUCTION P a l l i a t i v e c a r e i s d e f i n e d as t h e a c t i v e , compassionate care of the t e r m i n a l l y i l l at a time when t h e i r d i s e a s e i s no longer r e s p o n s i v e t o the t r a d i t i o n a l aims of cure and p r o l o n g a t i o n of l i f e , and when the emphasis of care i s on comfort and q u a l i t y of l i f e u n t i l death. P a l l i a t i v e care i s d e l i v e r e d by a m u l t i d i s c i p l i n a r y team able t o meet the p h y s i c a l , p s y c h o l o g i c a l and s p i r i t u a l needs of dying p a t i e n t s and t h e i r l o v e d ones. In p a l l i a t i v e care, both the dying person and the l o v e d ones are the u n i t of care, and care of the p a t i e n t ' s f a m i l y and f r i e n d s extends a f t e r the death has o c c u r r e d (Expert Working Group on I n t e g r a t e d P a l l i a t i v e Care f o r Persons with AIDS, 1987, p. 9). In Canada, and i n B r i t i s h Columbia (B.C.) hospice or p a l l i a t i v e care has, and continues t o be a low h e a l t h care p r i o r i t y f o r people with cancer and even more so f o r persons with A c q u i r e d Immunodeficiency Syndrome, or AIDS. Th i s r e a l i t y i s exacerbated as c o m p e t i t i o n i n c r e a s e s f o r seemingly s h r i n k i n g h e a l t h care d o l l a r s , s i n c e h e a l t h care p r o v i d e r s i n r e c e i p t of funding are under i n c r e a s i n g p r e s s u r e by f u n d i n g b o d i e s t o d e m o n s t r a t e t h e e f f e c t i v e n e s s of t h e i r funded programs. F a i l u r e t o do so j e o p a r d i z e s ongoing f i n a n c i a l support. To a s s i s t i n a v o i d i n g t h i s demise, and to work toward conveying the v a l u e of, and the need f o r a more comprehensive and i n t e g r a t e d p a l l i a t i v e c a r e s e r v i c e , t h i s p i e c e o f e v a l u a t i o n r e s e a r c h e x p l o r e s the p e r c e i v e d s t r e n g t h s and a r e a s i n need o f improvement of t h e Buddy/Home Care Program, one of numerous programs a d m i n i s t e r e d by AIDS Vancouver, a community-based AIDS o r g a n i z a t i o n i n B.C. 1 While the agency i n i t s e n t i r e t y i n c o n j u n c t i o n with o t h e r community a g e n c i e s embodies many o f t h e key components o f a p a l l i a t i v e c a r e s e r v i c e , w hich i s p r e c i s e l y the reason I chose to become i n v o l v e d , time p e r m i t t e d the study of only one small p a r t of t h i s l a r g e r system. Hence I have focused on the Buddy/Home Care Program, a Program i n which v o l u n t e e r s p r o v i d e one-to-one p r a c t i c a l (home care v o l u n t e e r s ) and emotional support (buddies) t o p e r s o n s w i t h AIDS or PWAs, under t h e s u p e r v i s i o n o f p a i d p e r s o n n e l ( C l i e n t C a r e Case Managers). To f a c i l i t a t e the e v a l u a t i o n of the Buddy/Home Care Program then, Chapter One s e t s the scene by r e v i e w i n g the i n c i d e n c e of AIDS and Human Immunodeficiency V i r u s , or HIV i n f e c t i o n , t h e p a l l i a t i v e c a r e p h i l o s o p h y and approach as i t a p p l i e s to PWAs, and the f e d e r a l and p r o v i n c i a l government p o l i c i e s and r e s u l t a n t programs i n p l a c e c u r r e n t l y p r o v i d i n g p a l l i a t i v e care s e r v i c e s t o PWAs. Ag a i n s t t h i s backdrop, Chapter Two l a y s out the r e s e a r c h d e s i g n and i m p l e m e n t a t i o n and p roblems o r l i m i t a t i o n s encountered along the way. Only quick and s p o r a d i c r e f e r e n c e w i l l be made to other r e l a t e d s t u d i e s i n t h e l i t e r a t u r e b e cause o f t h e d e a r t h o f r e l e v a n t m a t e r i a l t o be c a l l e d upon. C h a p t e r s T h r e e , Four and F i v e f o c u s on t h e 2 p r e s e n t a t i o n of the r e s e a r c h f i n d i n g s , u s i n g a p p l i c a b l e s o c i a l network a n a l y s i s c o n c e p t s as a framework. S p e c i f i c a l l y , Chapter Three maps out each of the f o u r PWA S o c i a l Networks d e s c r i p t i v e l y and r a i s e s some important t h e o r e t i c a l and p r a c t i c e - o r i e n t e d q u e s t i o n s with r e g a r d t o t h e p a l l i a t i v e c a r e a p p r o a c h and i n t e r v e n t i o n s t r a t e g i e s . Chapter Four examines the dimensions of the V o l u n t e e r - C l i e n t Subsystem of the Program and r a i s e s some p e r t i n e n t q u e s t i o n s with r e g a r d t o the i n t e n s i t y of these r e l a t i o n s h i p s . Chapter F i v e examines the dimensions of the Volunteer-Agency Subsystem of the Program and r a i s e s some p o i n t e d q u e s t i o n s r e l a t e d t o v o l u n t e e r t r a i n i n g , support, and s u p e r v i s i o n . The s i x t h and f i n a l chapter i s composed of two s e t s of recommendations. The f i r s t s e t , based on and coming out of the r e s e a r c h f i n d i n g s has t o do with improvements t h a t c o u l d be made to the much v a l u e d Buddy/Home Care Program. The second set has t o do with improvements needed o v e r a l l t o e s t a b l i s h a n a t i o n - w i d e i n t e g r a t e d h o s p i c e / p a l l i a t i v e care s e r v i c e . 3 CHAPTER ONE: THE NEED FOR EFFECTIVE PALLIATIVE CARE PROGRAMMING FOR PERSONS WITH AIDS As a means of p r o v i d i n g the r a t i o n a l e f o r e v a l u a t i n g the Buddy/Home Care Program, a program operated by AIDS Vancouver, and one which I b e l i e v e c o n s t i t u t e s p o r t i o n s of an i n t e g r a t e d p a l l i a t i v e care s e r v i c e , a number of i s s u e s need t o be addressed: t h e i n c i d e n c e o f AIDS and HIV i n f e c t i o n worldwide, i n Canada, and i n B r i t i s h Columbia t h e d e f i n i t i o n o f h o s p i c e / p a l l i a t i v e c a r e p h i l o s o p h y and a review of i t s key components from a systems p e r s p e c t i v e as they apply t o people with AIDS and HIV i n f e c t i o n t h e c u r r e n t s i t u a t i o n f e d e r a l l y and p r o v i n c i a l l y with r e g a r d t o government AIDS h o s p i c e / p a l l i a t i v e c a r e p o l i c i e s and r e s u l t a n t programs Each of these s u b j e c t s w i l l be t r e a t e d i n d i v i d u a l l y t o reach: the r a t i o n a l e of t h i s study which a c t s as the summary f o r t h i s chapter THE INCIDENCE OF AIDS AND HIV INFECTION Ac c o r d i n g t o Dr. Michael Rekart, D i r e c t o r of the D i v i s i o n o f S e x u a l l y T r a n s m i t t e d D i s e a s e C o n t r o l and Cha i r p e r s o n of the B.C. AIDS A d v i s o r y Committee: A - I - D - S . . . i s an a b b r e v i a t i o n f o r a c q u i r e d i m m u n o d e f i c i e n c y syndrome. A c q u i r e d b e c a u s e we a c q u i r e i t from someone e l s e ; i m m u n o d e f i c i e n c y because i t compromises our bodies' n a t u r a l defenses l e a d i n g t o a s t a t e o f d e c r e a s e d immunity; and syndrome because i t i n v o l v e s one or more sign s or 4 symptoms.AIDS has been d e f i n i t i v e l y proven to be caused by a v i r u s named Human Immunodeficiency V i r u s [HIV]...(Rekart, 1989, p. 1-2). Transmission can occur i n the f o l l o w i n g ways: (1) v i a the exchange o f semen and v a g i n a l s e c r e t i o n s d u r i n g u n p r o t e c t e d sexual i n t e r c o u r s e ; (2) v i a the exchange of b l o o d as a r e s u l t of s h a r i n g contaminated needles and s y r i n g e s , h o s p i t a l n e e d l e s t i c k a c c i d e n t s , and u n p r o t e c t e d sexual i n t e r c o u r s e ; (3) v i a the exchange of b l o o d or b l o o d products d u r i n g t r a n s f u s i o n s ; and (4) p e r i n a t a l l y from mother t o c h i l d (Rekart, 1989): From a worldwide p o i n t of view over h a l f of a l l c a s e s were t r a n s m i t t e d h e t e r o s e x u a l l y . In i n d u s t r i a l i z e d c o u n t r i e s , however, AIDS i s most f r e q u e n t l y a c q u i r e d from anal i n t e r c o u r s e (72% of U n i t e d States cases, 80% of Canadian cases and 93% of B r i t i s h Columbian cases. Needle s h a r i n g i s the next most r i s k y a c t i v i t y i n the U.S., a c c o u n t i n g f o r 17% of a l l cases. In Canada and B.C. needle drug users account f o r 2 - 5% of AIDS cases (Rekart, 1989, p. 5-6). As of June 1, 1989 the World H e a l t h O r g a n i z a t i o n (WHO) had a r e c o r d of 157,191 r e p o r t e d AIDS c a s e s , r e p r e s e n t a t i v e of 14 8 c o u n t r i e s from around the world (Mullens, 1989) . And, as of A p r i l 30, 1989, more than 2700 Canadians had been diagnosed with AIDS (Mullens, 1989). Documented AIDS cases i n the p r o v i n c e of B.C. as of October 20, 1989 t o t a l e d 637; 359 of these had a l r e a d y d i e d ( R e k a r t , 1989) . As i f t h e s e f i g u r e s a r e not s t a g g e r i n g enough, i t i s c r u c i a l t o be aware t h a t t h i s i s m e r e l y t h e " t i p o f t h e i c e b e r g " f o r t h r e e r e a s o n s . F i r s t , t h e r e are many more i n d i v i d u a l s i n a d d i t i o n t o 5 those diagnosed with AIDS who are HIV i n f e c t e d . The WHO e s t i m a t e s t h a t t h r e e t i m e s as many p e o p l e t h a n t h e 157,191, t e s t p o s i t i v e f o r HIV ( M u l l e n s , 1989). C o r r e s p o n d i n g l y , as of December 1987, an e s t i m a t e d 100,000 C a n a d i a n s were HIV p o s i t i v e , w h i l e at t h e p r o v i n c i a l l e v e l as o f September 30, 1989, 94,379 antibody t e s t s had been c a r r i e d out and 3,353 or 3.5% r e s u l t e d i n p o s i t i v e readings (Rekart, 1989). Second, at t h e b e g i n n i n g of t h e e p i d e m i c i t was b e l i e v e d t h a t approximately 10% of those who were HIV i n f e c t e d would go on t o d e v e l o p f u l l - b l o w n AIDS ("AIDS C o u l d B a n k r u p t H e a l t h Care System Says P r o j e c t D i r e c t o r " , 1985); now, however, only 11% of an HIV i n f e c t e d p o p u l a t i o n f o l l o w e d i n a recent study have remained asymptomatic a f t e r 10 years of being i n f e c t e d (Rekart, 1989). And t h i r d l y , t h e r e i s an undetermined number of u n t e s t e d i n d i v i d u a l s who may be i n f e c t e d who can t r a n s m i t HIV unknowingly. What a l l of t h i s means i s : (1) t h a t i t i s d i f f i c u l t t o know how many i n d i v i d u a l s are HIV i n f e c t e d because not everyone gets t e s t e d ; (2) t h a t everyone who i s i n f e c t e d can p o t e n t i a l l y t r a n s m i t the deadly v i r u s , which i s an even more l e t h a l t h r e a t i n c i r c u m s t a n c e s where i n d i v i d u a l s do not know t h a t they are i n f e c t e d ; and (3) t h a t at l e a s t 90% of those who are HIV i n f e c t e d w i l l go on t o develop AIDS or AIDS R e l a t e d Complex (ARC), and w i l l e v e n t u a l l y d i e as a r e s u l t u n l e s s a cure f o r AIDS i s d i s c o v e r e d . 6 Further, as the numbers of reported AIDS and HIV i n f e c t i o n cases increase, reported deaths are on the decrease due to e a r l i e r diagnosis, e f f o r t s on the part of some to r e f r a i n from engaging i n a c t i v i t i e s f u r t h e r depressing the immune system, and the life-prolonging capacity of the a n t i - r e t r o v i r a l drug, azidothymidine, or AZT (Abrams, 1988) . This i n c r e a s e d l i f e expectancy coupled with the greater numbers of those infected who w i l l develop AIDS or ARC, indicates that many PWAs w i l l l i v e long enough to benefit from h o s p i c e / p a l l i a t i v e care services. HOSPICE/PALLIATIVE CARE AND ITS APPLICATION TO PEOPLE WITH AIDS To gain an understanding of how h o s p i c e / p a l l i a t i v e care seems to be an appropriate mode of care for people with AIDS and others e x p e r i e n c i n g symptoms of HIV i n f e c t i o n , i t i s f i r s t necessary to review the h o s p i c e / p a l l i a t i v e care philosophy and i t s key components, expounded upon from a systems perspective. The Philosophy of Hospice/Palliative Care Hospice or p a l l i a t i v e care as i t has come to be known i n Canada has been defined as: . ..programs and services that provide care to those p a t i e n t s f o r whom treatment aimed at cure and prolongation of l i f e i s no longer appropriate but for whom therapy aimed at improving the quality of the remaining l i f e i s the primary o b j e c t i v e . P a l l i a t i v e care offers therapeutic services designed 7 to address the physical, psychosocial, and s p i r i t u a l needs of dying patients and t h e i r families (Health Services and Promotion Branch, 1981, p. 2). I m p l i c i t i n t h i s d e f i n i t i o n are the f o l l o w i n g philosophical tenets (Expert Working Group on Integrated P a l l i a t i v e Care for Persons With AIDS, 1987): - that death i s the natural culmination of l i f e and i s not to be seen as a f a i l u r e or something to be fought against when i t becomes inevitable as a res u l t of terminal disease - that the unit, or the recipients of care include the patient as well as his/her s i g n i f i c a n t others whether they be family members, friends, lovers. The rationale for including a l l of these i n the unit of care i s that what i s happening with each i n d i v i d u a l p h y s i c a l l y , p s y c h o s o c i a l l y , and s p i r i t u a l l y a f f e c t s every other i n d i v i d u a l involved - that patients have a right to make choices i n t h e i r l i v e s and t h i s includes making choices about the type of care they receive - that when nothing can be done to cure the disease i t s e l f , that symptoms can be r e l i e v e d or at least cared for as a means of achieving maximum comfort - that because patients and t h e i r s i g n i f i c a n t others have physical, psychosocial, and s p i r i t u a l needs, a multi- or i n t e r d i s c i p l i n a r y team composed of professionals, volunteers, as well as the unit of care, i s e s s e n t i a l to address these needs - that there must be continuity of care both between caregivers on the team and between d i f f e r e n t care locations - that patients f e e l most comfortable i n t h e i r own homes, i n a f a m i l i a r environment. Thus, i n circumstances i n which being at home i s not possible, patients should at least be situated i n a "homey" environment - that s i g n i f i c a n t others are i n need of care while t h e i r loved one i s i l l and after he/she has died as well - and that caregivers, whether they be s i g n i f i c a n t 8 others, professionals, and/or volunteers, are a l l i n need of emotional support The Key Components of Hospice/Palliative Care Although there i s no Canadian document that formally outlines nationally agreed upon, es s e n t i a l key components or standards o p e r a t i o n a l i z i n g the philosophy of p a l l i a t i v e care i n Canada, the B.C. Hospice/Palliative Care A s s o c i a t i o n has a r t i c u l a t e d key components or standards which are generally, informally agreed upon across the country as being es s e n t i a l to any complete p a l l i a t i v e care program. As re i t e r a t e d by the Expert Working Group i n i t s report Carina Together, they are as follows: 1. Symptom Control Component - Dying patients have myriad symptoms ... p a i n . . . nausea, shortness of breath, profound weakness, incontinence, confusion...Control of these symptoms i s esse n t i a l to the restoration of the patient's comfort and dignity 2. Administrative Component - ...recognizes that p a l l i a t i v e care i s not just a philosophy but a s p e c i f i c program of care services [that must be delivered, evaluated, and coordinated between home, hospital, day care and hospice settings] 3. Home Component - To die at home i s comforting to most people, providing s u f f i c i e n t help i s present... death may not be possible at home, but 'home' can be created i n f a c i l i t i e s of care... wherever that may be 4. Hospital Component - ...programs may develop s p e c i a l p a l l i a t i v e supports... i n h o s p i t a l s e t t i n g s . This may in c l u d e a designated ward, or p a l l i a t i v e care unit or a p a l l i a t i o n consultation team. These f a c i l i t i e s include acute...and long term care hospitals 9 5. V o l u n t e e r Component - D e a t h . . . i s not j u s t a ' p r o f e s s i o n a l ' c o n c e r n . The v o l u n t e e r b r i n g s a s p i r i t o f n o r m a l i t y and d a i l y r e a l i t y . . . P r o g r a m s p r o v i d e . . . r e c r u i t m e n t , t r a i n i n g , c o o r d i n a t i o n , and su p p o r t 6. S p i r i t u a l Component - Q u e s t i o n s , a n t i c i p a t i o n s , f e a r s , and hopes a r e some o f t h e . . . d i m e n s i o n s f o r p e o p l e f a c i n g d e a t h . T h i s component acknowledges [ t h i s ] and o f f e r s p r o f e s s i o n a l and v o l u n t e e r s u p p o r t 7. Bereavement Component - The l o v e d ones l i v e t h r o u g h t h e d e a t h o f t h e p e r s o n and b e y o n d . . . p r o f e s s i o n a l and v o l u n t e e r s u p p o r t i s p r o v i d e d t h r o u g h a p r o g r a m o f g r i e f s u p p o r t . . . t o f a c i l i t a t e g ood g r i e f and h e a l t h y r e c o n n e c t i o n s 8. E d u c a t i o n Component - . . . c r o s s e s many p u b l i c and h e a l t h b o u n d a r i e s i n p r o v i d i n g b e t t e r u n d e r s t a n d i n g o f t h e p r o c e s s o f d y i n g and t h e needs o f p a t i e n t s and l o v e d ones 9. E v a l u a t i o n / R e s e a r c h Component - As p a l l i a t i v e c a r e programs emerge, t h e r e a r i s e q u e s t i o n s a b o u t q u a l i t y , e f f e c t i v e n e s s , f u r t h e r development ( E x p e r t W o r k i n g Group on I n t e g r a t e d P a l l i a t i v e Care f o r Per s o n s W i t h AIDS, 1987, pp. 21-23). The S y s t e m i c O r i e n t a t i o n o f t h e H o s p i c e / P a l l i a t i v e Care Approach A l t h o u g h not s p e c i f i c a l l y s t a t e d as such i n t h e l i t e r a t u r e , t h e h o s p i c e / p a l l i a t i v e c a r e p h i l o s o p h y and i t s s u b s e q u e n t o p e r a t i o n a l i z a t i o n i n t o key components c o n s t i t u t e s a s y s t e m s a p p r o a c h , w h i c h i s p i c t o r i a l l y r e p r e s e n t e d i n F i g u r e 1: The I d e a l H o s p i c e / P a l l i a t i v e Care S e r v i c e System. The f o l l o w i n g e l a b o r a t i o n upon what c o n s t i t u t e s an i d e a l p a l l i a t i v e c a r e s e r v i c e f o r PWAs u t i l i z e s F i g u r e 1 as i t s framework. 10 FIGURE 1: The Ideal H o s p i c e / P a l l i a t i v e Care S e r v i c e System Inter-disciplinary, Team SERVICE SUPPORT SYSTEM 'INTERDISCIPLINARY TEAM - DIRECT' SERVICE HELPING SYSTEM Lover(s) Family Member (s)y PWA Bereave-ment Follow Up Volunteer Coordinator & Volunteers/ 'physio/ \N Occupational / J Music Therapist THE UNIT OF CARE CLIENT SYSTEM Friend (s) Physician Pastoral Counsellor Nurse Social Worker Education Admin-i s t r a t i o n , 11 B e g i n n i n g a t t h e c e n t r e o f F i g u r e 1 t h e n , one encounters a f a i r l y l a r g e c i r c l e r e p r e s e n t i n g the U n i t of Care, or the C l i e n t System. As can be seen, the C l i e n t System i s composed of the PWA, h i s / h e r l o v e r ( s ) , f a m i l y member(s), and f r i e n d ( s ) . The fo u r s m a l l e r o v e r l a p p i n g c i r c l e s used t o repr e s e n t these f o u r s e t s of i n d i v i d u a l s i l l u s t r a t e s t h a t e a c h i n d i v i d u a l i s a f f e c t e d by (Buckingham, 1983; Cohen, 1979; and Zimmerman, 1986), and at t h e same t i m e p o t e n t i a l l y a f f e c t s t h e p h y s i c a l , p s y c h o s o c i a l , and s p i r i t u a l s t a t e s of each of the others i n the Un i t of Care C l i e n t System (Zimmerman, 1986) . Moving o u t s i d e the Unit of Care C l i e n t System, one encounters a s e r i e s of t e n c i r c l e s which o v e r l a p with one another as w e l l as with the U n i t of Care C l i e n t System. These ten c i r c l e s represent members of the M u l t i - or I n t e r d i s c i p l i n a r y Team o r t h e D i r e c t S e r v i c e H e l p i n g System. As i n the C l i e n t System, although i t i s not as ev i d e n t d i a g r a m a t i c a l l y as would be u s e f u l , members of t h e Team a l l p o t e n t i a l l y a f f e c t and a r e a f f e c t e d by i n t e r a c t i o n s with one another. T h i s i n c l u d e s a f f e c t i n g and being a f f e c t e d by members of the U n i t of Care C l i e n t System, each of whom are i n c l u d e d as i n t e g r a l members of the Team D i r e c t S e r v i c e H e l p i n g System. Why are c l i e n t s or p a t i e n t s team members? Being members of the Team e n s u r e s t o a h i g h e r d egree t h a t c l i e n t s have an op p o r t u n i t y t o a r t i c u l a t e t h e i r needs and wants to the other Team members as a means of p l a y i n g more of an 12 active role i n t h e i r own care (Buckingham, 1983; Cohen, 1979; and Zimmerman, 1986) . Other Team Direct Service Helping System members include, but are not li m i t e d to: a p h y s i c i a n , a nurse, a s o c i a l worker, a cha p l a i n , a volunteer c o o r d i n a t o r , v o l u n t e e r s , and a physio/occupational/music therapist. The rationale for the involvement of such a variety of d i s c i p l i n e s has to do with the b e l i e f that no one person or d i s c i p l i n e can meet a l l one p a t i e n t ' s needs. The u l t i m a t e r e s p o n s i b i l i t y of the Team Direct Service Helping System i s to provide quality care to the Unit of Care Clien t System i n whatever environment the p a t i e n t / s i g n i f i c a n t others may be - home, day care f a c i l i t y , long term care f a c i l i t y , h ospital or in-patient p a l l i a t i v e care unit (Health Services and Promotion Branch, 1981). Quality of care g e n e r a l l y means attending to iss u e s r e l a t e d to symptom management, psychological support, interpersonal support, independent l i v i n g , legal and f i n a n c i a l support, l i f e s t y l e / c u l t u r e / r e l i g i o n , service delivery needs, and bereavement support - i n t h i s l i s t e d order of p r i o r i t y (Expert Working Group On Integrated P a l l i a t i v e Care for Persons With AIDS, 1987). Moving another step beyond the Team Direct Service Helping System, one encounters a series of f i v e c i r c l e s r e p r e s e n t i n g the Team i t s e l f , Bereavement Follow-Up, Education, Research, and A d m i n i s t r a t i o n . These f i v e 13 programs constitute the Service Support System. They work c l o s e l y with one another a f f e c t i n g and being a f f e c t e d by one another from w i t h i n and without, evidenced by the dual d i r e c t i o n a l arrows between one another, and between them each and the Direct Service Helping and Unit of Care Clien t Systems within. As part of the Service Support System the Direct Service Helping System i s responsible for making early r e f e r r a l s to other needed s e r v i c e s i n c l u d i n g the Bereavement Follow-Up Program, f o r a d v i s i n g the A d m i n i s t r a t i o n of Education and Research needs, f o r enabling Education and Research e f f o r t s , and f o r informing and being directed by the Administration. The Bereavement Follow-Up Program, the second component of the Service Support System as one moves clockwise around the Service Support System i s often overseen by the Mul t i - or I n t e r d i s c i p l i n a r y Team's s o c i a l worker, while the actual follow up with surviving family members and s i g n i f i c a n t others i s often c a r r i e d out by trained volunteers (S. Hogman, personal communication, November 1987). Cards and notes, follow up phone c a l l s , and bi-weekly support groups are some of the services offered by volunteers and s t a f f to people who have lo s t t h e i r loved ones. Contact i s often maintained for a year when possible, e s p e c i a l l y i n high r i s k cases i n which survivors are perceived to be having great d i f f i c u l t y coping i n a healthy manner. E a r l y involvement of f a m i l y / s i g n i f i c a n t others i n the h o s p i c e / p a l l i a t i v e care program ensures that they are aware of, and hopefully f e e l supported, once the death has occurred, by those p r o v i d i n g the Bereavement Follow-Up Program. The knowledge that t h e i r f a m i l y / s i g n i f i c a n t others w i l l not be completely alone after t h e i r death i s often quite reassuring to dying PWAs as well. Continuing clockwise around the S e r v i c e Support System, one encounters i t s t h i r d and fourth components, Education and Research. Education about AIDS, p a l l i a t i v e care, and death and dying i s provided on an in-service basis to h o s p i c e / p a l l i a t i v e care employees, as well as on an out-of-service basis to interested or key members of the Larger Community System. Research to e s t a b l i s h the value of h o s p i c e / p a l l i a t i v e care i s considered to be c r u c i a l since l i t t l e sound research has been conducted i n t h i s realm. A d m i n i s t r a t i o n , the f i f t h , f i n a l , but c r u c i a l component of the Service Support System has the following r e s p o n s i b i l i t i e s : to set p o l i c y ; to ensure q u a l i t y assurance; to supervise the general day-to-day operation of the s e r v i c e (Buckingham, 1983; Cohen, 1979; and Zimmerman, 1986); to provide s t a f f support and supervision; and to l i a i s e with funders and other Larger Community System bodies. Outside the Service Support System one encounters 15 the Larger Community System which e s s e n t i a l l y represents forces from the outside world having an influence on the H o s p i c e / P a l l i a t i v e Care S e r v i c e System. It i n c l u d e s Funders, Federal and P r o v i n c i a l Government P o l i c i e s , Social Climate, P o l i t i c a l Climate, and so on. Can PWAs Benefit From Hospice/Palliative Care? Although i t i s true that the h o s p i c e / p a l l i a t i v e care movement emerged i n response to the sometimes seemingly invasive and unnecessary curative approaches to terminal forms of cancer, t h i s does not mean that i t i s an approach that i s not applicable to people with other chronic i l l n e s s e s , including AIDS. Hospice/palliative care as i t has been described thus far seems to be a very appropriate mode of care for PWAs although i t must be adapted s l i g h t l y to s u i t the d i f f e r e n t disease progression of HIV: With cancer care there i s often an early period of a c t i v e and aggressive treatment followed by the reasonably c l e a r t r a n s i t i o n to pure p a l l i a t i v e , comfort care... In AIDS care there i s no such clear t r a n s i t i o n . Active aggressive treatment i s often continued close to death. However, as the present outcome i s always f a t a l and much sh o r t e r than i n cancer care i n general, p r e p a r a t i o n and i n t e g r a t i o n f o r death should begin at diagnosis. Therefore the d i v i s i o n l i n e between aggressive and p a l l i a t i v e care i s somewhat b l u r r e d at a l l p o i n t s along the AIDS disease t r a j e c t o r y (Expert Working Group on P a l l i a t i v e Care for Persons With AIDS, 1987, pp.25-26) . In f a c t , perhaps i t i s not necessary, but rather 16 cumbersome, to t r y to a r t i f i c i a l l y separate curative and p a l l i a t i v e forms of care for PWAs, or for any others for that matter. Perhaps i t a l l has more to do with what could be considered "appropriate care". After a l l , a l l p a t i e n t s could no doubt b e n e f i t from systemic h o s p i c e / p a l l i a t i v e care, because i t merely amounts to humane, empowering health care. FEDERAL/PROVINCIAL HOSPICE/PALLIATIVE CARE POLICIES AND PROGRAMS Having reviewed the incidence of AIDS worldwide, across the country and p r o v i n c i a l l y , become f a m i l i a r with the main tenets of h o s p i c e / p a l l i a t i v e care and established i t as an appropriate form of care for people with AIDS, there i s one l a s t objective to be met before the rationale for evaluating the Buddy/Home Care Program operated by AIDS Vancouver w i l l become evident. This objective i s to examine government p o l i c i e s and resultant programs that have emerged to address the health and psychosocial needs of those l i v i n g with HIV disease. S p e c i f i c a l l y , the following subtopics w i l l be addressed: - f e d e r a l government h o s p i c e / p a l l i a t i v e care p o l i c i e s i n general - f e d e r a l government h o s p i c e / p a l l i a t i v e care p o l i c i e s for PWAs - resultant programs Canada-wide - B.C. government h o s p i c e / p a l l i a t i v e care p o l i c i e s i n general as well as s p e c i f i c a l l y for PWAs 17 - Vancouver City h o s p i c e / p a l l i a t i v e care p o l i c i e s for PWAs, and - resultant programs i n the province of B.C. with s p e c i a l emphasis on the community-based AIDS Vancouver and i t s Buddy/Home Care Program Federal Government Hospice/Palliative Care P o l i c i e s i n General Overshadowing health care p o l i c y i n Canada, and thus by d e f i n i t i o n , h o s p i c e / p a l l i a t i v e care p o l i c y i n Canada, i s the federal government's continued commitment to cost containment. In 1977, the i n i t i a l 50 - 50 open-ended f e d e r a l - p r o v i n c i a l c o s t - s h a r i n g funding formula was replaced by a block, per capita grant arrangement (Van Loon, 1978) . The only s t i p u l a t i o n made by the federal government at that time regarding the use of these funds was that each province set aside $20 per person to finance long term, home, and ambulatory care services (Van Loon, 1978). This was no doubt one of the e a r l i e s t moves to decrease costs incurred i n acute care hospital s e t t i n g s , as was the e l i m i n a t i o n of f e d e r a l c a p i t a l grants for the construction of hospitals. Reflecting t h i s cost containment orientation, there are two documents o u t l i n i n g f e d e r a l government ho s p i c e / p a l l i a t i v e care p o l i c y . The f i r s t , e n t i t l e d , P a l l i a t i v e Care Services i n Hospitals (Working Group on S p e c i a l S e r v i c e s i n H o s p i t a l s , Health S e r v i c e s Directorate, Health Services and Promotion Branch, 1981) 18 s p e l l s out one of the f i r s t Canadian d e f i n i t i o n s of p a l l i a t i v e care and outlines some of the key components of p a l l i a t i v e care discussed e a r l i e r . In addition, the Working Group's report lays out many s p e c i f i c guidelines associated with running a p a l l i a t i v e care unit i n an acute care h o s p i t a l : assessment of patient population; bed requirements; recommended d i s t r i b u t i o n of u n i t s ; a d m i n i s t r a t i v e p o l i c y , procedures, and c o n t r o l ; s t a f f establishment and coverage; s t a f f t r a i n i n g and q u a l i f i c a t i o n s ; s p e c i f i c supporting departments and s e r v i c e s ; space a l l o c a t i o n , u t i l i z a t i o n and s p e c i a l design features; equipment; and relationships with other departments and services. Perhaps most s i g n i f i c a n t l y though, i n terms of cost containment, P a l l i a t i v e Care  Services i n Hospitals also outlines very c l e a r l y the various locales i n which, or models of how p a l l i a t i v e care can be delivered. These include a discrete hospital unit, a consultative or symptom control team that seeks out and a s s i s t s dying patients throughout the entire hospital, a home care program that may be hospital or community based, a day care program, an o u t p a t i e n t program, as well as a bereavement follow-up s e r v i c e (Working Group on Services i n Hospitals, 1981). Although t h i s document seeks to describe the e s s e n t i a l s of services i n hospitals, i t also makes very evident the federal government's contention that much p a l l i a t i v e care i s to be provided outside acute care hospital settings. The second federal p o l i c y paper (1982), P a l l i a t i v e  Care i n Canada, commissioned by Health and Welfare Canada acknowledges many of the p a l l i a t i v e care services already in existence at that time across the country, reviews the va r i o u s l o c a l e s and models f o r d e l i v e r i n g p a l l i a t i v e care, and makes a couple of key recommendations with regard to the federal scene. The f i r s t has to do with the creation of a national p a l l i a t i v e care coordinating, information sharing agency. The second advocates that an i n t e g r a t e d n a t i o n a l , p a l l i a t i v e care program be established, emphasizing a home care component, as such a measure would save Canadians an estimated $700 m i l l i o n (1982 dollars) per year. Federal Government Hospice/Palliative Care P o l i c i e s for People With AIDS Against t h i s backdrop of Canadian h o s p i c e / p a l l i a t i v e care policy, the AIDS epidemic exploded unexpectedly onto the scene. In an attempt to come to terms with t h i s new phenomenon, the then Health and Welfare Minister Monique Begin announced her intention to e s t a b l i s h a National Advisory Committee on AIDS. The Committee's r e s p o n s i b i l i t i e s were to stay up-to-date on the epidemic and to coordinate e f f o r t s to deal with i t ("Minister Announces Formation of AIDS Committee", 1983). Meanwhile, having heard much expert testimony on the state of AIDS and AIDS care i n Canada, the Standing 20 Committee on N a t i o n a l H e a l t h and Welfare, charged with "determin[ing] the concerns and problems i n d e a l i n g with the AIDS epidemic" (1986, p. 9) p r e s e n t e d i t s r e p o r t and recommendations t o the House of Commons i n the s p r i n g of 1986. T o p i c s c o v e r e d by recommendations i n c l u d e : e d u c a t i o n and i n f o r m a t i o n , r e s e a r c h r e q u i r e m e n t s , r e p o r t a b i l i t y and c o n f i d e n t i a l i t y , insurance, continued monitoring, as w e l l as h o s p i c e / p a l l i a t i v e c a r e . The Committee's h o s p i c e / p a l l i a t i v e care recommendations were as f o l l o w s : THAT adequate funding be a l l o c a t e d t o the P a l l i a t i v e Care Foundation [ e s t a b l i s h e d as a r e s u l t of the 1982 r e p o r t mentioned e a r l i e r , P a l l i a t i v e Care i n Canada and a l r e a d y i n a tenuous p o s i t i o n f i n a n c i a l l y ] f o r an o r g a n i z e d survey of e x i s t i n g care methods and f a c i l i t i e s f o r AIDS p a t i e n t s i n Canada THAT i n c o n j u n c t i o n with AIDS p a t i e n t s a group of experts i n v o l v i n g the P a l l i a t i v e Care Foundation, e c o n o m i s t s , h o s p i c e o p e r a t o r s , and p u b l i c h e a l t h o f f i c i a l s develop a model f o r i n t e g r a t e d p a l l i a t i v e care of AIDS p a t i e n t s THAT a c o s t e f f e c t i v e n e s s a n a l y s i s be undertaken t o examine the model f o r i n t e g r a t e d p a l l i a t i v e care as opposed t o the present methods of c a r i n g f o r AIDS p a t i e n t s . I t i s important t h a t the concerns and requirements of AIDS p a t i e n t s and t h e i r f a m i l y and f r i e n d s be c o n s i d e r e d i n the model. THAT f i n a n c i a l a s s i s t a n c e be p r o v i d e d t o those AIDS c e n t r e s t h a t a r e p r e s e n t l y d e v e l o p i n g h o s p i c e f a c i l i t i e s [THAT] i n c r e a s e d government funding be p r o v i d e d and t h a t o t h e r a s p e c t s of h e a l t h c a r e and s o c i a l programs should not s u f f e r f i n a n c i a l l y as a r e s u l t of having any of t h e i r funding r e a l l o c a t e d t o AIDS (p. 29) . As a r e s u l t of the Standing Committee's o v e r a l l r e p o r t 21 and recommendations, the new H e a l t h and Welfare M i n i s t e r of the day - Jake Epp - announced ("$39 M i l l i o n Pledged A g a i n s t AIDS", 1986) the a l l o c a t i o n of $39 m i l l i o n i n a d d i t i o n t o t h e $4 m i l l i o n a l r e a d y expended by h i s m i n i s t r y f o r AIDS r e s e a r c h (approximately $14.5 m i l l i o n of the $39 m i l l i o n ) , education, the opening of a new m i n i s t r y AIDS department, and s u p p o r t t o s e r v i c e p r o v i d i n g community groups l i k e B.C.'s AIDS Vancouver which r e c e i v e d $150,000 per annum (the t h r e e combined r e c e i v i n g the other $14.5 m i l l i o n ) . As a r e s u l t o f t h e S t a n d i n g Committee's recommendations s p e c i f i c t o h o s p i c e / p a l l i a t i v e care f o r PWAs, I am not s u r e whether t h e P a l l i a t i v e Care Foundation r e c e i v e d funds t o c a r r y out i t s survey of Canadian programs, but a group of experts charged with d e v e l o p i n g an i n t e g r a t e d model of p a l l i a t i v e care f o r PWAs was formed, and among o t h e r t h i n g s , t h i s group c o n d u c t e d a s u r v e y o f programs. Cos t e f f e c t i v e n e s s s t u d i e s have y e t t o be u n d e r t a k e n , and a l t h o u g h an a d d i t i o n a l $48 m i l l i o n was a l l o c a t e d t o AIDS education, $35 m i l l i o n t o AIDS r e s e a r c h , and $20 m i l l i o n t o the support of community-based s e r v i c e agencies f o r a t o t a l of $129 m i l l i o n , (Wong, 1988) many would argue t h a t the $20 m i l l i o n set a s i d e f o r community support has done l i t t l e t o improve or e s t a b l i s h h ospice programs across the country. As w e l l , i t i s u n c l e a r whether these funds made a v a i l a b l e are new or r e a l l o c a t e d from elsewhere i n 22 the H e a l t h and Welfare budget. The Expert Working Group on I n t e g r a t e d P a l l i a t i v e Care f o r PWAs, e s t a b l i s h e d i n response t o recommendations made by the Standing Committee on N a t i o n a l H e a l t h and Welfare t o develop a model of p a l l i a t i v e care and to conduct cost e f f e c t i v e analyses, p r e s e n t e d i t s f i n d i n g s i n a r e p o r t e n t i t l e d C a r i n a Together (1987). To s a t i s f y the need t o develop an i n t e g r a t e d p a l l i a t i v e care model, the Expert Working Group conducted a two-part survey and a s e r i e s of s i t e v i s i t s . The f i r s t s e c t i o n of the survey asked respondents which i n c l u d e d h o s p i t a l s , p a l l i a t i v e c a r e programs, home c a r e / v i s i t i n g n u r s e s e r v i c e s and community-based programs, t o d e s c r i b e the programs and s e r v i c e s they p r o v i d e . The second s e c t i o n asked these same respondents t o rank the v a r i o u s needs of PWAs i n order of p r i o r i t y . V i s i t s t o Montreal, New York C i t y , and San F r a n c i s c o augmented by Working Group members' f i r s t hand knowledge of s e r v i c e networks i n Vancouver and T o r o n t o were made as a means o f c o l l e c t i n g more q u a l i t a t i v e data concerning programs and needs. In summary, the Working Group determined t h a t AIDS care i n Canada. i s c u r r e n t l y p r o v i d e d p r i m a r i l y i n acute c a r e h o s p i t a l s e t t i n g s and by gay community-based v o l u n t a r y AIDS s e r v i c e o r g a n i z a t i o n s . Instead the more c o s t e f f i c i e n t p r o p o s e d i n t e g r a t e d model, which r e c o g n i z e s t h a t t h e needs o r c o n c e r n s o f PWAs 23 ( p s y c h o l o g i c a l / i n t e r p e r s o n a l , s e r v i c e d e l i v e r y , symptom c o n t r o l , bereavement, i n d e p e n d e n t l i v i n g , l e g a l / f i n a n c i a l , and l i f e s t y l e / r e l i g i o u s ) vary i n order of p r i o r i t y depending on the stage of i l l n e s s ( e a r l y , p r o g r e s s i v e , advanced, or t e r m i n a l ) maintains t h a t care i s t h e r e f o r e best d e l i v e r e d by a v a r i e t y of combinations of i n d i v i d u a l s and agencies i n the acute care system (most o f t e n h o s p i t a l s ) and i n the a l t e r n a t e care system ( p a l l i a t i v e c a r e programs, community and s e l f - h e l p a g e n c i e s ) . T h i s i n t e g r a t e d c a r e model emphasizes u t i l i z i n g s e r v i c e s a l r e a d y i n e x i s t e n c e which allows each community the f l e x i b i l i t y t o develop i t s own model based on i t s own unique set of circumstances: these s e r v i c e s [ p a l l i a t i v e care s e r v i c e s f o r PWAs and t h e i r l o v e d ones] must be d e v e l o p e d and d e l i v e r e d at the community l e v e l u s i n g a wide range of v o l u n t e e r and p r o f e s s i o n a l c a r e g i v e r s and with an o r g a n i z a t i o n a l s t r u c t u r e which i n t e g r a t e s the acute care, long term care, p a l l i a t i v e care and community systems i n t o a f u l l y c o o r d i n a t e d c a r e d e l i v e r y system...There i s a p r e s s i n g need t o develop these community-based o r g a n i z a t i o n s . The p a l l i a t i v e care needs of persons with AIDS and t h e i r l o v e d ones are immediate and i n t h e f o r e s e e a b l e f u t u r e w i l l c ontinue t o grow. We cannot and should not wait (p. 37) . The Working Group a l s o developed a model f o r e s t a b l i s h i n g t h i s i n t e g r a t e d p a l l i a t i v e care d e l i v e r y system. The t h r e e l e v e l d e l i v e r y model emphasizes the need f o r the community and a l l l e v e l s of government t o come to g e t h e r t o s p e c i f y needs (planning l e v e l ) , t o implement programs ( c o o r d i n a t i n g l e v e l ) , and to p r o v i d e d i r e c t education, h e a l t h and community support s e r v i c e s (care l e v e l ) . I t 24 a l s o emphasizes the need f o r communication between a l l t h r e e l e v e l s . Beyond d e v e l o p i n g t h e i n t e g r a t e d p a l l i a t i v e c a r e d e l i v e r y and implementation model, the Working Group a l s o made a number of recommendations which are worthy of note f o r they r e p r e s e n t the c u r r e n t s t a t e of a f f a i r s w i t h r e g a r d t o p a l l i a t i v e care p o l i c y f o r PWAs i n Canada: - t h a t governments a t a l l l e v e l s - f e d e r a l , p r o v i n c i a l and m u n i c i p a l - a c t i v e l y promote the development of p a l l i a t i v e care s e r v i c e s i n t h e i r j u r i s d i c t i o n s so t h a t a l l persons with AIDS and t h e i r f a m i l i e s and f r i e n d s have a c c e s s t o p a l l i a t i v e c a r e s e r v i c e s from t h e ti m e o f d i a g n o s i s through death and bereavement - t h a t p r o v i n c i a l governments make new and a d d i t i o n a l funds a v a i l a b l e immediately t o h e a l t h c a r e p r o v i d e r groups and o t h e r a p p r o p r i a t e o r g a n i z a t i o n s t o expand or develop p a l l i a t i v e care s e r v i c e s designed t o meet the needs of...[PWAs] and t h e i r f a m i l i e s - t h a t h e a l t h c a r e p r o v i d e r g r o u p s , w i t h t h e f i n a n c i a l and c o n s u l t a t i v e support of p r o v i n c i a l governments, d e v e l o p an i n t e g r a t e d and comprehensive network of p a l l i a t i v e c a r e . . . - t h a t , with the f i n a n c i a l support of...governments, the p l a n n i n g , c o o r d i n a t i o n and d e l i v e r y of AIDS care be i n i t i a t e d i n each community or r e g i o n of Canada - t h a t w h i l e p a l l i a t i v e c a r e i n i t i a t i v e s a r e expanding across Canada, s p e c i a l p i l o t p r o j e c t s must be undertaken t o demonstrate and eva l u a t e the e f f i c a c y and e f f e c t i v e n e s s o f t h e p r o p o s e d model...[described above]...and other a l t e r n a t i v e models of h e a l t h care f o r persons with AIDS...Such p r o j e c t s may i n c l u d e an economic e v a l u a t i o n of these models - t h a t r e s e a r c h funding bodies i n Canada make a commitment t o the study of AIDS care by becoming a c t i v e s o l i c i t o r s and supporters of r e s e a r c h t o improve the care of persons with AIDS 25 - t h a t H e a l t h and Welfare Canada p r o v i d e funding and c o n s u l t a t i v e s u p p o r t f o r t h e e d u c a t i o n o f a l l c a r e g i v e r s . . . - t h a t a n a t i o n a l p o l i c y f o r t h e c a r e of...[PWAs]...be developed by H e a l t h and Welfare Canada t o ensure a comprehensive approach t o AIDS c a r e t h a t i s c o n s i s t e n t w i t h t h e C a n a d i a n p r i n c i p l e o f u n i v e r s a l a c c e s s t o h e a l t h c a r e (Expert Working Group, 1987, pp. 6 - 8 ) . B e f o r e moving t o a d i s c u s s i o n o f how t h e s e f e d e r a l p o l i c i e s have a f f e c t e d B r i t i s h Columbian government h o s p i c e / p a l l i a t i v e care p o l i c y f o r PWAs, c o n s i d e r f i r s t the r e s u l t a n t s t a t e of a f f a i r s p r o g r a m a t i c a l l y across Canada as a whole. R e s u l t a n t Programs Canada-Wide Looking at the types of programs t h a t have ev o l v e d a c r o s s Canada as a r e s u l t o f f e d e r a l and i n d i v i d u a l p r o v i n c i a l p o l i c i e s , i t becomes c l e a r t h a t t h e r e i s one r e c u r r e n t theme, which as i t w i l l be seen, i s e v i d e n t i n B r i t i s h Columbia as w e l l . No doubt u n i n t e n t i o n a l l y on the p a r t of the s e r v i c e p r o v i d e r s i n v o l v e d and more as a r e s u l t of the f a i l u r e t o r e c o g n i z e the o p p o r t u n i t y t o j o i n f o r c e s i n the competition f o r scarce resources, t h e r e seems to be two separate systems of p a l l i a t i v e care, t h a t d i f f e r i n t h e i r d e f i n i t i o n of p a l l i a t i v e care, and i n whom they serve. One system - the non-AIDS care system - which d e f i n e s p a l l i a t i v e care as a p p r o p r i a t e at the t e r m i n a l , end stage of i l l n e s s , p r o v i d e s s e r v i c e f o r people with i l l n e s s e s l i k e cancer. The other system -26 the AIDS care system - d e f i n e s p a l l i a t i v e care as t o t a l care needed immediately f o l l o w i n g d i a g n o s i s and p r o v i d e s s e r v i c e f o r p e o p l e w i t h AIDS. The r e a s o n f o r t h e continuance of these two separate systems of care i s t h a t many of the more t e r m i n a l , end stage of i l l n e s s programs are r e l u c t a n t t o accept people with AIDS because they are not s u f f i c i e n t l y meeting the need r e p r e s e n t e d by cancer p a t i e n t s (Expert Working Group on P a l l i a t i v e Care, 1987; and Hedemann, 1987). R e s u l t a n t Programs i n the Non-AIDS Care System In the non-AIDS care system as of 1986, th e r e were 359 programs n a t i o n - w i d e , 150 h o s p i t a l - b a s e d , 84 community-based, and the remaining 125 both h o s p i t a l and community-based (Hedemann, 1987). Although most non-AIDS p a l l i a t i v e care programs were i n i t i a l l y e s t a b l i s h e d i n h o s p i t a l s , the focus i s s h i f t i n g more and more t o the community. A p p r o x i m a t e l y 80% o f t h e s e programs a r e endeavouring t o operate on a budget of $100, 000 or l e s s per year; f o r h o s p i t a l - b a s e d programs, budgets g e n e r a l l y come from g l o b a l h o s p i t a l b u d g e t s and f o r 40% o f community-based programs, funds come from Home Care Programs. The remaining 60% of community-based programs r e l y upon p r i v a t e l y r a i s e d funds and donations. I t i s e s t i m a t e d t h a t somewhere between 10,000 and 12,000 Canadians are served by p a l l i a t i v e care programs a n n u a l l y and the primary s e r v i c e s they r e c e i v e are symptom c o n t r o l and p a t i e n t and f a m i l y c o u n s e l l i n g (Hedemann, 1987) . A l t h o u g h t h e i d e a l i n c l u d e s many more components o f s e r v i c e and an i n t e r d i s c i p l i n a r y team, both of these are s u f f e r i n g d r a m a t i c a l l y as a r e s u l t of the l i m i t e d funds a v a i l a b l e ; only 13% of a l l Canadian programs have an i n t e r d i s c i p l i n a r y team composed of a p h y s i c i a n , nurse, s o c i a l worker, c h a p l a i n , and v o l u n t e e r s (Hedemann, 1987). R e s u l t a n t Programs i n the AIDS Care System In the p a l l i a t i v e AIDS care system, as was a l r e a d y mentioned, AIDS care has been p r o v i d e d p r i m a r i l y i n acute care h o s p i t a l beds and by community-based AIDS o r g a n i z a t i o n s of which t h e r e are 25 across the country. T y p i c a l l y PWAs remain i n t h e i r own homes t a k i n g advantage of home care s e r v i c e s and p r a c t i c a l and emotional support s e r v i c e s o f f e r e d by h e a l t h departments and community-b a s e d AIDS o r g a n i z a t i o n s , p r o v i d i n g t h e y f i n d out -g e n e r a l l y as a r e s u l t of an admission t o h o s p i t a l -about how t o g a i n a c c e s s . Often not having the support o f f a m i l y or p a r t n e r s t o a c t as c a r e g i v e r s , t h e s e i n d i v i d u a l s end up i n acute care h o s p i t a l beds more o f t e n and f o r l o n g e r p e r i o d s o f t i m e t h a n i s m e d i c a l l y necessary because t h e r e i s such a shortage of s e r v i c e s e n a b l i n g them to remain i n t h e i r own homes, and because they o f t e n cannot a f f o r d , g i v e n the i n h e r e n t poverty t h a t goes hand i n hand wi t h AIDS, t o remain i n t h e i r own homes. The only e s t a b l i s h e d AIDS hospice i n Canada, opened 28 i n March 1988, i s a twelve bed i n - p a t i e n t f a c i l i t y known as Casey House, s i t u a t e d i n the downtown core of the c i t y of Toronto. The i n i t i a l purchase and r e n o v a t i o n of the f a c i l i t y was funded by proceeds from June Callwood's book Twelve Weeks i n S p r i n g and a s u b s t a n t i a l grant from the O n t a r i o M i n i s t r y of H e a l t h . To date (Flannery, 1989) Casey House has an o p e r a t i n g budget of $2.6 m i l l i o n a l s o p r o v i d e d by the O n t a r i o M i n i s t r y of H e a l t h (Bloom, 1988). O t h e r w i s e , gay community-based AIDS s e r v i c e o r g a n i z a t i o n s are r e p r e s e n t e d by a n a t i o n a l o r g a n i z a t i o n o f which t h e y a r e a l l members - t h e C a n a d i a n AIDS S o c i e t y . The Canadian AIDS S o c i e t y ' s m i s s i o n statement i s t o " f i g h t AIDS by s t r e n g t h e n i n g the community-based e f f o r t s and by speaking as a n a t i o n a l v o i c e with the experience and resources of member o r g a n i z a t i o n s " (Tivey, 1986). B.C. Government H o s p i c e / P a l l i a t i v e Care P o l i c i e s i n General and S p e c i f i c a l l y f o r PWAs Moving now t o B r i t i s h Columbia, t h e p r o v i n c i a l government has implemented i t s own c o s t c o n t r o l s t r a t e g i e s i n r e s p o n s e t o t h e change i n f e d e r a l -p r o v i n c i a l funding arrangements. Such s t r a t e g i e s over the l a s t 10 or 15 years have i n c l u d e d : bed c l o s u r e s , u t i l i z a t i o n of g l o b a l budgets, the l i m i t i n g of b i l l i n g numbers t o f e e - f o r - s e r v i c e p h y s i c i a n s ( u n t i l j u s t r e c e n t l y ) , government - B r i t i s h C olumbia M e d i c a l 29 A s s o c i a t i o n f e e s c h e d u l e n e g o t i a t i o n s , and t h e c e n t r a l i z a t i o n of d i a g n o s t i c s e r v i c e s i n h o s p i t a l s and/or other government approved f a c i l i t i e s (Evans, 1983). Such i s the p r o v i n c i a l h e a l t h M i n i s t r y ' s c u r r e n t p o s i t i o n on t h e p r o v i s i o n o f h e a l t h c a r e g e n e r a l l y . Thus f a r , f o r m a l i z e d p o l i c i e s s p e c i f i c t o p a l l i a t i v e c a r e f o r people with AIDS as w e l l as f o r other t e r m i n a l l y i l l i n d i v i d u a l s are a l l but n o n - e x i s t e n t . The few d e t a i l s t h a t c o u l d be d i s c e r n e d are as f o l l o w s . P r o v i n c i a l Government P o l i c y I n f l u e n c i n g The Non-AIDS  H o s p i c e / P a l l i a t i v e Care S e r v i c e System With regard t o the non-AIDS s e r v i c e system, which e x i s t s i n B.C. j u s t as i t does Canada-wide, assumingly f o r t h e same r e a s o n s , t h e B.C. M i n i s t r y o f H e a l t h ' s p o l i c y - m a k i n g has c e n t r e d around: (1) f o l l o w i n g through i n 1980 on a v e r b a l commitment to p r o v i d e funds f o r p a l l i a t i v e care; (2) r e c e i v i n g without t a k i n g f u r t h e r a c t i o n , a b r i e f from the B.C. H o s p i c e / P a l l i a t i v e Care A s s o c i a t i o n ; and (3) w o r k i n g w i t h members of t h e community on a p r o p o s a l f o r the development and funding of p a l l i a t i v e care i n B.C. F i r s t l y , t o f o l l o w through on i t s v e r b a l commitment t o support a p a l l i a t i v e care p r o j e c t i n Vancouver, the M i n i s t r y o f H e a l t h p r o v i d e d s e p a r a t e f u n d s f o r f o u r a d d i t i o n a l home care nurses, f o u r a d d i t i o n a l i n p a t i e n t nurses t o s t a f f the p a l l i a t i v e care u n i t at Vancouver General H o s p i t a l , and a community-based c o o r d i n a t i n g team 30 composed of a p r o j e c t c o o r d i n a t o r , a p h y s i c i a n , a s o c i a l work c o n s u l t a n t , a v o l u n t e e r c o o r d i n a t o r , and a s e c r e t a r y a s s i s t a n t (Richardson, 1984) . The M i n i s t r y had al r e a d y made a s i m i l a r arrangement f o r a p a l l i a t i v e care s e r v i c e i n V i c t o r i a ; Hospice V i c t o r i a , based at Royal J u b i l e e H o s p i t a l became o p e r a t i o n a l i n 1980. Secondly, by 1984, the B.C. H o s p i c e / P a l l i a t i v e Care A s s o c i a t i o n (BCHPCA), the spokesgroup f o r a l l p r o v i n c i a l non-AIDS h o s p i c e / p a l l i a t i v e care programs had come i n t o being, and by 1986 had submitted a b r i e f t o the M i n i s t r y of H e a l t h which o u t l i n e d the h i s t o r i c a l development of p a l l i a t i v e c a r e i n t h e p r o v i n c e and t h e needs o f p a l l i a t i v e care p a t i e n t s . The BCHPCA's b r i e f made the f o l l o w i n g recommendations: t h a t : i ) p a l l i a t i v e care be r e c o g n i z e d as i n t e g r a l t o h e a l t h c a r e . i i ) t h e MOH [ M i n i s t r y o f H e a l t h ] f u n d c o r e p a l l i a t i v e teams throughout B.C. i i i ) the MOH recog n i z e the HPCA [B.C. Hospice & P a l l i a t i v e Care A s s o c i a t i o n ] as t h e p r o v i n c i a l a s s o c i a t i o n f o r p a l l i a t i v e c a r e . iv) standards of care be developed f o r hos p i c e c a r e . v) MOH p r o v i d e funding support f o r t r a i n i n g care teams. v i ) MOH p r o v i d e a g r a n t t o t h e HPCA (B.C. H o s p i c e / P a l l i a t i v e Care A s s o c i a t i o n B r i e f , 1986, p. 1). As o f 1987, o n l y recommendation i i i , government r e c o g n i t i o n t h a t t h e "BCHPCA i s t h e p r o v i n c i a l a s s o c i a t i o n f o r p a l l i a t i v e c a re", had been achieved. And t h i r d l y , p o s s i b l y as a r e s u l t of the BCHPCA b r i e f , w h ich was s u p p o r t e d by t h e B.C. M e d i c a l 31 A s s o c i a t i o n (BCMA), but most d e f i n i t e l y as a r e s u l t of t h e numerous f u n d i n g r e q u e s t s from community h o s p i c e groups, the M i n i s t r y of Hea l t h e s t a b l i s h e d a working group. T h i s Working Group, composed of r e p r e s e n t a t i v e s from the H e a l t h M i n i s t r y , the Canadian Cancer S o c i e t y , t h e BCHPCA, and t h e BCMA s u b m i t t e d a r e p o r t t o t h e M i n i s t r y o f H e a l t h t h a t s u g g e s t e d t h a t a l l groups r e p r e s e n t e d on t h e w o r k i n g group j o i n t l y s h a r e t h e r e s p o n s i b i l i t y o f p l a n n i n g , d e v e l o p i n g , and f u n d i n g p a l l i a t i v e care s e r v i c e s f o r the p r o v i n c e . Improvements t o e x i s t i n g s e r v i c e s such as more home care n u r s i n g , and homemaking hours, and equipment and medication insurance coverage coupled with the establishment of p a l l i a t i v e care c o o r d i n a t i n g teams i n each r e g i o n throughout the pr o v i n c e were a l s o recommended (Dr. J a c q u e l i n e F r a s e r , and P h y l l i s Hood, p e r s o n a l communications, b o t h i n November 1987) . Developments as a r e s u l t of the Working Group's s t r a t e g y paper are to date unknown. P r o v i n c i a l Government P o l i c y I n f l u e n c i n g The AIDS • H o s p i c e / P a l l i a t i v e Care S e r v i c e System P r o v i n c i a l government h o s p i c e / p a l l i a t i v e care p o l i c y i n the AIDS care system, or r a t h e r , the l a c k t h e r e o f , w i l l be d i s c u s s e d i n terms o f : - p r o v i n c i a l government funding p a t t e r n s with regard t o AIDS Vancouver g e n e r a l l y - p r o v i n c i a l government funding p a t t e r n s w i t h regard to AIDS Vancouver's Housing Committee 32 - t h e c r e a t i o n o f t h e p r o v i n c i a l AIDS A d v i s o r y Committee P r o v i n c i a l Government Funding P a t t e r n s With Regard t o  AIDS Vancouver G e n e r a l l y AIDS Va n c o u v e r , a gay community-based AIDS o r g a n i z a t i o n i s t h e main, and t h e l a r g e s t , s e r v i c e p r o v i d e r i n B.C. w i t h a mandate committed s o l e l y t o p r o v i d i n g s e r v i c e to i n d i v i d u a l s with HIV i n f e c t i o n , and i t i s f o r t h i s reason t h a t i t i s the focus i n the ensuing d i s c u s s i o n . I t i s an o r g a n i z a t i o n t h a t began p r o v i d i n g e d u c a t i o n a l , p r a c t i c a l , and emotional support s e r v i c e s v o l u n t a r i l y and o n l y began a p p l y i n g f o r government f u n d i n g when t h e need became so g r e a t t h a t s t a f f p o s i t i o n s were needed. A l t h o u g h s u c c e s s f u l i n t h e s e c u r i n g of funds from f e d e r a l and c i t y f unding bodies, AIDS Vancouver has a long h i s t o r y of most o f t e n b e i n g t u r n e d down i n i t s quests f o r p r o v i n c i a l monies. T h i s h i s t o r y began i n the f a l l of 1986 with the agency's s u b m i s s i o n t o t h e M i n i s t r y o f H e a l t h o f a p r o p o s a l f o r $80,000 t o keep i t s education and c l i e n t support s e r v i c e s going (Mullens, 198 6). The p r o p o s a l was r e j e c t e d f o r a number of reasons: (1) because t h e r e was no money f o r t h e moment g i v e n t h e M i n i s t r y ' s p r e o c c u p a t i o n with working with the f e d e r a l government to open a v i r a l l a b i n B.C. (Mullens, 1986); (2) because the M i n i s t r y f e l t i t had done enough by i n v e s t i n g $5 m i l l i o n o v e r a p e r i o d of t h r e e y e a r s e n d i n g March 1887 f o r 33 t e s t i n g , r e s e a r c h , and c o u n s e l l i n g (Berry, 1986); (3) because the M i n i s t r y d i d not see the p r o p o s a l as f i t t i n g w ith i t s funding mandate (Myers, 1986); and (4) because the M i n i s t r y c o u l d not d e a l with p r o p o s a l s submitted i n the middle of the budget year (Mullens, 198 6). There were some though, who d i d not see any of these r a t i o n a l e s as a c c e p t a b l e . The author of an e d i t o r i a l appearing i n the Vancouver Sun e n t i t l e d " D e a l i n g With AIDS" (September 10,1986) p o i n t e d out the e x i s t e n c e of a h e a l t h improvement f u n d t o t a l l i n g $120 m i l l i o n , c o u n t e r a c t i n g t h e s h o r t a g e o f f u n d s argument. In a d d i t i o n t h i s e d i t o r i a l made r e f e r e n c e t o a M i n i s t r y of H e a l t h p o l i c y t h a t funding p r o p o s a l s h e l p i n g to reduce h o s p i t a l c o s t s would be encouraged. AIDS Vancouver's education, p r a c t i c a l and emotional support s e r v i c e s very d e f i n i t e l y met t h i s c r i t e r i a , t h e r e b y r e d u c i n g t h e M i n i s t r y ' s c r e d i b i l i t y s t i l l f u r t h e r . As w e l l , AIDS Vancouver's E x e c u t i v e D i r e c t o r at the time, Bob Tivey, f e l t t h a t the funding p r o p o s a l had been r e j e c t e d at h i g h l e v e l s i n the M i n i s t r y , and accused Deputy M i n i s t e r S t a n Dubas o f b l o c k i n g t h e p r o p o s a l a l l e g e d l y as a r e s u l t of h i s fundamentalist C h r i s t i a n b e l i e f s condemning homosexuality. The M i n i s t r y denied t h a t homophobia p l a y e d a r o l e i n i t s d e c i s i o n (Myers, 1986) Perhaps the p r e s s u r e was too great, f o r the M i n i s t r y o f H e a l t h r e l e n t e d t o some degree and p r o v i d e d AIDS Vancouver with #30,000 (Mullens, 1986). This was the f i r s t and l a s t time the Ministry ever provided the agency with core funding. In 1987, the Health M i n i s t r y made $1.4 m i l l i o n available for AIDS education, none of which was received by AIDS Vancouver. The issue of homophobia i n the Health Ministry was once again brought to the fore by Bob Tivey who said his organization was being discriminated against i n terms of funding because i t i s seen as being s t r i c t l y a gay organization (Barrett, 1987): Health Minister Peter Dueck said...he didn't mean to imply anything when he said AIDS Vancouver could "help t h e i r own kind. When I say ' t h e i r own kind', I mean someone who knows of someone who i s i l l . . . i t doesn't have to be of the same kind so far as philosophy or l i f e s t y l e i s concerned...That was no slur...Nothing was meant other than any group at any time has sympathy towards a group of t h e i r kind. They are not only welcome, but we are very supportive of people h e l p i n g each other on a voluntary basis" (Barrett, 1987). Homophobic or not, according to the current Executive D i r e c t o r of AIDS Vancouver, B r i a n Peel (personal communication, February 1990) the p r o v i n c i a l government has informed him that i t would only award the organization contracts to f u l f i l l c e rtain very s p e c i f i c tasks relevant to i t s expertise i n working with the gay community, and that no s u s t a i n i n g funds would be forthcoming. 35 P r o v i n c i a l Government Funding P a t t e r n s With Regard to the  Housing Committee of AIDS Vancouver As e a r l y as 1985, AIDS Vancouver a l s o expressed the need f o r an i n - p a t i e n t h o s p i c e f a c i l i t y . And t h i s p o s i t i o n was upheld by o f f i c i a l s w ith Vancouver C i t y and the M i n i s t r y of H e a l t h ("AIDS Funding Gets Boost: AIDS Group Seeks B e t t e r F a c i l i t i e s " , 1985) . With t h e M i n i s t r y ' s encouragement, the Housing Committee of AIDS Vancouver prepared a p r o p o s a l f o r a 25-bed f a c i l i t y t o house people i n the more c h r o n i c as w e l l as t e r m i n a l stages of AIDS (Draaisma, 1985). Approaching a l l t h r e e l e v e l s of government - f e d e r a l , p r o v i n c i a l , and c i t y -the t o t a l p r i c e t a g was $1,350,000 (Myers, 1986). The p r o v i n c e was asked t o work with the f e d e r a l government t o cover the mortgage on a vacant long term care f a c i l i t y l o c a t e d i n the West End of Vancouver (Draaisma, 1985). The p r o p o s a l f o r t h i s 25-bed f a c i l i t y was t u r n e d down by t h e M i n i s t r y o f H e a l t h because i t was "too m e d i c a l " ( M u l l e n s , 1986) and b e c a u s e i t c o u l d be c o n c e i v e d of as b e i n g i n c o m p e t i t i o n with St. Paul's H o s p i t a l , the main acute care s e r v i c e p r o v i d e r f o r PWAs (Myers, 1986) . In response, the Housing Committee r e -worked t h e p r o p o s a l t o emphasize t h e l o n g t e r m c a r e component f o r the c h r o n i c a l l y i l l . T h i s amended p r o p o s a l too, was r e j e c t e d by the M i n i s t r y f o r being "too m e d i c a l " and too much l i k e a mini h o s p i t a l . N e v e r t h e l e s s , the M i n i s t r y maintained t h a t i t was committed to hospice care f o r PWAs, but i n d i c a t e d t h a t such a f a c i l i t y should be operated by S t . Paul's H o s p i t a l t o ensure c o n t i n u i t y of care (Mullens, 1986). S i x months l a t e r , the M i n i s t r y announced t h a t i t was l o o k i n g i n t o a c q u i r i n g a 12-bed f a c i l i t y ("B.C. Plans AIDS Hospice", 1986) . By March of 1987, the M i n i s t r y was s t i l l i n v e s t i g a t i n g p o s s i b l e s i t e s and the then H e a l t h M i n i s t e r P e t e r Dueck s t a t e d t h a t : we're b u d g e t i n g f o r a h o s p i c e . . . [but i t may n o t ] . . . c a t e r e x c l u s i v e l y t o AIDS p a t i e n t s . . . t h e p r o v i n c e does not have a hos p i c e f o r p a t i e n t s with cancer or other d i s e a s e s t h a t cause more deaths than AIDS (Fournier, 1987). I t was not u n t i l May of 1987 t h a t t h e r e was any f u r t h e r t a l k of an AIDS hosp i c e ; Peter Dueck r e f e r r e d the whole m a t t e r t o h i s newly formed p r o v i n c i a l AIDS A d v i s o r y Committee ( E d i t o r i a l , Vancouver Sun. May 6, 1987). To date, t h e r e s t i l l i s no hospice f o r PWAs i n B.C. Perhaps one of the reasons f o r t h i s i s t h a t without f e d e r a l government support t o cover c a p i t a l c o s t s (Van Loon, 1978), the p r o v i n c i a l M i n i s t r y i s aware t h a t i t would be f o r c e d t o bear a l l f i n a n c i a l r e s p o n s i b i l i t y f o r c a p i t a l as w e l l as o p e r a t i n g c o s t s . C r e a t i o n of the P r o v i n c i a l AIDS A d v i s o r y Committee The impetus t o e s t a b l i s h a p r o v i n c i a l AIDS A d v i s o r y Committee t h a t would be r e s p o n s i b l e f o r the c o o r d i n a t i o n of a l l responses r e l a t e d t o AIDS i n B.C. came from AIDS Vancouver's Bob Tiv e y ("Funding Request Turned Down", 37 1986), V a n c o u v e r C i t y ' s M e d i c a l H e a l t h O f f i c e r , and Vancouver C i t y C o u n c i l ( C i t y Manager's Report, 1987). In May of 1987, P e t e r Dueck ( M i n i s t e r of Health) responded t o the c a l l , but n e g l e c t e d t o i n c l u d e r e p r e s e n t a t i v e s from AIDS Vancouver or from Vancouver C i t y as members (Fournier, 1987). Vancouver C i t y H o s p i c e / P a l l i a t i v e Care P o l i c y f o r PWAs In June of 1985 the C i t y p r o v i d e d AIDS Vancouver with a $50,000 grant which enabled the o r g a n i z a t i o n t o open i t s f i r s t o f f i c e , h i r e some s t a f f , and f i n a n c e i t s e d u c a t i o n , p r a c t i c a l , and e m o t i o n a l s u p p o r t s e r v i c e s (Doyle, 1985) . With t h e t r e n d s e t , t h e C i t y has c o n t i n u e d t o fund the o r g a n i z a t i o n f o r t h i s amount on an a n n u a l b a s i s as i t v e r y c l e a r l y sees i t has a r e s p o n s i b i l i t y t o p r o v i d e i n f r a s t r u c t u r e f u n d s f o r o r g a n i z a t i o n s l i k e AIDS Vancouver (Campbell, 1988). In a d d i t i o n t o s u p p o r t i n g the i d e a of approaching other m u n i c i p a l i t i e s t o share the f i n a n c i a l l o a d of the AIDS e p i d e m i c i n t h e Lower M a i n l a n d ( C i t y Manager's Report, 1987), and encouraging f e d e r a l and p r o v i n c i a l governments t o i n c r e a s e funds ( C i t y Manager's Report, 1987; & M a r i n a k i s , 1986) to address a l l types of s e r v i c e s r e q u i r e d by t h e HIV i n f e c t e d , t h e C i t y has a l s o e s t a b l i s h e d i t s own t a s k f o r c e . The Mayor's Task Force on AIDS, e s t a b l i s h e d i n 1987 i s r e s p o n s i b l e f o r 38 c o o r d i n a t i n g s e r v i c e w i t h i n the C i t y , f o r a d v i s i n g C i t y C o u n c i l on AIDS r e l a t e d matters, and f o r l i a i s i n g with other l e v e l s of government ( C i t y Manager's Report, 1987). As one of i t s f i r s t t a s k s , the Task Force c a l l e d f o r the adoption of a f i v e year p l a n t o f i g h t AIDS (Lee, 1988). R e s u l t a n t H o s p i c e / P a l l i a t i v e Care Programs i n the P r o v i n c e of B.C. In keeping with the du a l , separate system approach, t h e a r r a y o f programs r e s u l t i n g from t h e f e d e r a l , p r o v i n c i a l , and c i t y p o l i c i e s reviewed thus f a r , w i l l be d e s c r i b e d i n d i v i d u a l l y . R e s u l t a n t H o s p i c e / P a l l i a t i v e Care Programs i n the  Non-AIDS S e r v i c e System In B r i t i s h Columbia, non-AIDS h o s p i c e / p a l l i a t i v e care programs r e f l e c t the Canadian theme i n t h a t they have developed a c c o r d i n g t o two models of d e l i v e r y - the h o s p i t a l - b a s e d model, and t h e community-based model. H o s p i t a l - b a s e d programs c o o r d i n a t e the p r o v i s i o n of t h e i r wide v a r i e t y of s e r v i c e s from w i t h i n a h o s p i t a l s e t t i n g . On the other hand, community-based programs i n B.C. are p h y s i c a l l y s i t u a t e d out i n the community, and e i t h e r p r o v i d e l i m i t e d , but d i r e c t one-to-one involvement with t e r m i n a l l y i l l p a t i e n t s and t h e i r f a m i l i e s , or c o o r d i n a t e a wide v a r i e t y of s e r v i c e s through the u t i l i z a t i o n of the i n t e r d i s c i p l i n a r y team approach. C h a r a c t e r i s t i c examples of each d e l i v e r y model w i l l be pr e s e n t e d below. 39 The H o s p i t a l - B a s e d D e l i v e r y Model Consider f i r s t , the f a i r l y comprehensively developed h o s p i t a l - b a s e d p a l l i a t i v e c a r e program a t L i o n s Gate H o s p i t a l i n North Vancouver, one of no more than f i v e i n the e n t i r e p r o v i n c e (S. Hogman, p e r s o n a l communication, November 1987). The p h y s i c i a n - d i r e c t e d i n t e r d i s c i p l i n a r y team based at the h o s p i t a l i s composed of the medical d i r e c t o r , t h e t e r m i n a l l y i l l p a t i e n t and h i s / h e r s i g n i f i c a n t others, a nurse, s o c i a l worker, c h a p l a i n , v o l u n t e e r ( s ) , p h y s i o t h e r a p i s t , and music therapy student. The i n t e r d i s c i p l i n a r y team c o o r d i n a t e s s e r v i c e s t o p a t i e n t s , wherever t h e y may be. The i n - p a t i e n t P a l l i a t i v e Care U n i t has enough beds, one f o r every f o u r persons i n the e n t i r e program, i n the event t h a t anyone needing sudden admission can be accommodated. I n - p a t i e n t c a r e i s p r i m a r i l y r e s e r v e d f o r p a t i e n t s r e q u i r i n g a s s i s t a n c e with p a i n and other symptoms which have gone out of c o n t r o l . By d e f i n i t i o n , no r e s u s c i t a t i v e measures are e x e r c i z e d on the Un i t , or i n any of the other program environments. V i s i t i n g hours on the U n i t are 24 hours a day, meal times are f l e x i b l e , and p a t i e n t s are f r e e t o b r i n g with them p e r s o n a l belongings t h a t are o f t e n so r e a s s u r i n g ; t h e U n i t i s a much homier, r e l a x e d environment compared t o other u n i t s w i t h i n the h o s p i t a l . Two or t h r e e beds i n a nearby n u r s i n g home are a v a i l a b l e f o r p a t i e n t s who do not need t o be i n the P a l l i a t i v e Care U n i t , but who are unable t o go home, f o r whatever reason. And of course, t h e r e i s a home care component to the program, which i s p r i m a r i l y p r o v i d e d by p r e - e x i s t i n g community r e s o u r c e s such as n u r s i n g , homemaking, and p h y siotherapy support. The s o c i a l worker, as one of many r e s p o n s i b i l i t i e s , c o o r d i n a t e s the bereavement f o l l o w up program l a r g e l y c a r r i e d out by v o l u n t e e r s , r e c r u i t e d and t r a i n e d by the h o s p i t a l ' s V o l u n t e e r C o o r d i n a t o r . The f o l l o w up program c o n s i s t s of f o l l o w up phone c a l l s and a s u p p o r t group t w i c e p e r month. The program a d m i n i s t r a t i o n c o o r d i n a t e s t h e s e t t i n g o f p o l i c i e s , q u a l i t y assurance, and the p r o v i s i o n of e d u c a t i o n . The Community-Based D e l i v e r y Models Programs emulating community-based d e l i v e r y models i n B.C. take two forms - those p r o v i d i n g a c o n s u l t a t i v e c o o r d i n a t i n g s e r v i c e , and those p r o v i d i n g d i r e c t s e r v i c e t o t e r m i n a l l y i l l p a t i e n t s and t h e i r s i g n i f i c a n t o t h e r s . Community-based c o n s u l t a t i v e c o o r d i n a t i n g s e r v i c e . T here a r e o n l y two such s e r v i c e s i n B.C., one i n Vancouver, and one i n V i c t o r i a . These are a l s o the only programs i n the p r o v i n c e i n r e c e i p t of any funds d i r e c t l y from t h e M i n i s t r y of H e a l t h (S. Hogman, p e r s o n a l communication, November 1987) and a r e t h e most comprehensively developed as a r e s u l t . The Vancouver Hospice Program (Capilano C o l l e g e , 1983) i s c o o r d i n a t e d by an i n t e r d i s c i p l i n a r y Core Team, which i s p a r t of the C o n t i n u i n g Care D i v i s i o n o f t h e V a n c o u v e r H e a l t h 41 Department. Team members include the patient and his/her s i g n i f i c a n t others, a p h y s i c i a n , a s o c i a l worker, a volunteer coordinator, volunteer(s) , other professionals such as nurses from the community, and an administrative a s s i s t a n t . The Team inte r v i e w s r e f e r e n t s and i n conference with the patient/family, formulates a care p l a n . Regular Team meetings are h e l d to ensure continuity of care wherever the patient i s situated. To further f a c i l i t a t e continuity of care, formalized l i n e s of communication exist between home care services, the Team, and the i n - p a t i e n t P a l l i a t i v e Care Unit at Vancouver General Hospital. A bereavement follow up program i s coordinated by the Team s o c i a l worker. The administration f a c i l i t a t e s evaluation, quality assurance, education, and research. Community-based d i r e c t s e r v i c e . The Richmond Hospice Program, i s one of about 45 programs province-wide providing d i r e c t service to terminally i l l patients and t h e i r s i g n i f i c a n t others (J. Frase r , personal communication, November 1987). The Richmond Hospice Program i s composed of a voluntary Board of Directors headed by a voluntary Executive Director having a nursing background (J. Budworth, personal communication, November 1987) . The Board meets monthly to work on program development and implementation i s s u e s . Approximately twenty volunteers, trained by a g r i e f and bereavement consultant provide f r i e n d l y v i s i t s to t e r m i n a l l y i l l 42 p a t i e n t s and t h e i r f a m i l i e s i n h o s p i t a l and at home. Bereavement f o l l o w up i s p r o v i d e d when p o s s i b l e and/or d e s i r e d . V o l u n t e e r s a t t e n d c o n t i n u i n g e d u c a t i o n workshops org a n i z e d by the Board on an annual b a s i s . A l t h o u g h t h e v o l u n t e e r v i s i t a t i o n a d m i n i s t r a t i o n , and e d u c a t i o n components o f h o s p i c e a r e p r o v i d e d by t h e Richmond group, the m u l t i - o r i n t e r d i s c i p l i n a r y team which i s r e s p o n s i b l e f o r h e l p i n g determine needs, f o r meeting those which the f a m i l y / s i g n i f i c a n t others cannot meet, and f o r c o o r d i n a t i n g s e r v i c e s between home and h o s p i t a l environments i s n o n - e x i s t e n t . The r e s e a r c h component i s a l s o not represented. To summarize, t h e r e are l e s s than f i v e h o s p i t a l -based programs l i k e L i ons Gate H o s p i t a l ' s , a l l of which are funded e n t i r e l y through g l o b a l h o s p i t a l budgets and are f a i r l y we11-developed; t h e r e are two community-based Teams, funded by the M i n i s t r y of H e a l t h t h a t p r o v i d e the f u l l complement of e s s e n t i a l components of p a l l i a t i v e c are; and t h e r e are approximately 45 v o l u n t a r y community groups with r e l a t i v e l y l i t t l e money (funded p r i m a r i l y by d o n a t i o n s ) p r o v i d i n g o n l y a few o f t h e e s s e n t i a l components of a comprehensive p a l l i a t i v e care s e r v i c e . T h i s l a c k of well-developed programs i s a d i r e c t r e s u l t of the f a i l u r e on the p a r t of f e d e r a l and p r o v i n c i a l government h e a l t h m i n i s t r i e s t o a r t i c u l a t e h o s p i c e / p a l l i a t i v e care p o l i c y and the f a i l u r e t o p r o v i d e 43 adequate funds. The net r e s u l t of these i n d i s c r e t i o n s i s t h a t t h e r e are a few well-developed programs i n the more p o p u l a t e d r e g i o n s o f t h e p r o v i n c e (Vancouver and V i c t o r i a ) and a l a r g e number of inad e q u a t e l y developed programs o u t s i d e of these areas. R e s u l t a n t H o s p i c e / P a l l i a t i v e Care Programs  i n the AIDS S e r v i c e System Once an i n d i v i d u a l t e s t s p o s i t i v e f o r the HIV i n B.C. and becomes s i c k e r as the d i s e a s e p r o g r e s s e s , he/she i s f o r c e d i f not l i v i n g i n the area, t o make t r i p s or even move t o the Lower Mainland, due t o the r e l a t i v e l a c k of s e r v i c e s elsewhere i n the p r o v i n c e . The f o l l o w i n g are the main o r g a n i z a t i o n s i n e x i s t e n c e t o respond t o h i s / h e r h o s p i c e / p a l l i a t i v e care needs: St. Paul's H o s p i t a l ; the Vancouver H e a l t h Department; AIDS Vancouver; the Persons With AIDS C o a l i t i o n ; the McLaren Housing S o c i e t y ; and the Dawn House S o c i e t y . I t i s estimated t h a t 88% (Rekart, 1989) of the p r o v i n c e ' s PWAs l i v e i n the Lower Mainland, but i t i s not c l e a r how many of these i n d i v i d u a l s had t o move t o the r e g i o n i n order t o r e c e i v e adequate s e r v i c e . St. Paul's H o s p i t a l I n - p a t i e n t care i s p r o v i d e d on 7 medical wards, and o u t - p a t i e n t c a r e i s p r o v i d e d by t h e a l r e a d y - e x i s t i n g G a s t r o e n t e r o l o g y and I n f e c t i o u s D i s e a s e C l i n i c s , i n c o n j u n c t i o n with community-based g e n e r a l p r a c t i t i o n e r s and s u b - s p e c i a l i s t s . The AIDS Care Team, i n t e r d i s c i p l i n a r y i n nature and composed of p r o f e s s i o n a l s from the h o s p i t a l as w e l l as the community, meets on a weekly b a s i s "to review the care of a l l i n p a t i e n t s and pro b l e m a t i c o u t p a t i e n t s " and t o " r e s o l v e c l i n i c a l and p s y c h o s o c i a l p a t i e n t care problems" (Goldstone, 1988). St. Paul's p r o v i d e s these s e r v i c e s through funding from i t s g l o b a l h o s p i t a l budget from the p r o v i n c i a l M i n i s t r y of H e a l t h . The Vancouver H e a l t h Department With f u n d s from t h e p r o v i n c i a l government, t h e Vancouver H e a l t h Department p r o v i d e s home n u r s i n g and physiotherapy s e r v i c e s t o PWAs through i t s Home Care Program, and homemaking s e r v i c e s through i t s Long Term Care Program. To d a t e , few i f any PWAs have been admitted t o Long Term Care f a c i l i t i e s because of the requirement t h a t incoming r e s i d e n t s not have communicable d i s e a s e s . Although funding f o r both Home Care and Long Term Care programs has i n c r e a s e d o v e r t h e y e a r s t o accommodate PWAs ( C i t y Manager's Report, 1987), these i n c r e a s e s have thus f a r been inadequate e s p e c i a l l y s i n c e t h e r e a r e no Long Term Care f a c i l i t i e s t o a c t as in t e r m e d i a r y steps between home and h o s p i t a l . AIDS Vancouver AIDS Vancouver i s an o r g a n i z a t i o n t h a t f i t s the community-based d i r e c t s e r v i c e model o f h o s p i c e / p a l l i a t i v e c a r e . Although not complete i n the e s s e n t i a l components of a h o s p i c e / p a l l i a t i v e c a r e 45 program, AIDS Vancouver does o f f e r many. I t may be h e l p f u l at t h i s p o i n t t o r e f e r back t o F i g u r e 1: The I d e a l H o s p i c e / P a l l i a t i v e Care S e r v i c e System on page 11 to f a c i l i t a t e the upcoming d e s c r i p t i o n of present and absent components. The u n i t of care c l i e n t system. As of the s p r i n g of 1989, a l l d i r e c t s e r v i c e s t o PWAs were p r o v i d e d by the Support S e r v i c e s Department. Although i t i s u n c l e a r the extent t o which PWAs and t h e i r s i g n i f i c a n t others were regarded as the U n i t of Care C l i e n t System (at the ce n t r e of the f i g u r e ) , i t was obvious t h a t a l l s e r v i c e s were d i r e c t e d a t PWAs, and some, were d i r e c t e d a t t h e i r s i g n i f i c a n t o t h e r s . For example, the Buddy/Home Care Program, p r o v i d i n g one-to-one homemaking and emotional support by v o l u n t e e r s , e n a b l i n g PWAs t o continue l i v i n g independently i n t h e i r own homes f o r longer p e r i o d s o f time, the Emergency A s s i s t a n c e Fund, p r o v i d i n g f i n a n c i a l a s s i s t a n c e i n emergency s i t u a t i o n s , and the Food Bank were a l l s e r v i c e s o b v i o u s l y d i r e c t e d a t PWAs. S i g n i f i c a n t others c o u l d a l s o be ass i g n e d a "homemaking" v o l u n t e e r or a "buddy". As w e l l , the Lovers, Family, F r i e n d s , and G r i e f S upport Groups were o p e r a t e d s p e c i f i c a l l y f o r s i g n i f i c a n t o t h e r s . I n t e r d i s c i p l i n a r y team d i r e c t s e r v i c e h e l p i n g  system. The i n t e r d i s c i p l i n a r y team i n i t s e n t i r e t y d i d not e x i s t as a u n i f i e d group. However, PWAs and t h e i r s i g n i f i c a n t others and the agency's v o l u n t e e r s had some 46 degree of c o n t a c t with the C l i e n t Care Case Managers r e s p o n s i b l e f o r a d m i n i s t e r i n g the agency's s e r v i c e s t o PWAs. These t h r e e i n d i v i d u a l s , each with separate case loads, met t o g e t h e r t o c o o r d i n a t e s e r v i c e , had r e g u l a r c o n t a c t with St. Paul's H o s p i t a l , met on a monthly b a s i s with the l o c a l H e a l t h U n i t , and made r e f e r r a l s t o other p r o f e s s i o n a l s i n the community. In t h i s sense, members of what c o u l d be an i n t e r d i s c i p l i n a r y team a l l had a r o l e t o p l a y . The s e r v i c e s u p p o r t system. No a d d i t i o n a l d i s c u s s i o n of the I n t e r d i s c i p l i n a r y Team D i r e c t S e r v i c e H e l p i n g System or the G r i e f Support Group seems necessary at t h i s p o i n t . C o n t i n u i n g t o move cloc k w i s e around the system, the e d u c a t i o n component was s a t i s f i e d by the Information and E d u c a t i o n S e r v i c e s Department of the agency. P r i m a r i l y the Department p r o v i d e d community educ a t i o n by o p e r a t i n g an AIDS i n f o r m a t i o n l i n e , a s p e a k e r s bureau, and by d e v e l o p i n g and p r i n t i n g i n f o r m a t i o n a l packages geared t o the g e n e r a l p u b l i c as w e l l as s p e c i f i c t a r g e t groups. In c o n j u n c t i o n with the Support S e r v i c e s Department and the V o l u n t e e r C o o r d i n a t o r , Information and E d u c a t i o n S e r v i c e s a l s o p r o v i d e d i n - s e r v i c e t r a i n i n g f o r the agency's two t o t h r e e hundred v o l u n t e e r s . The r e s e a r c h component of h o s p i c e / p a l l i a t i v e care has been s a t i s f i e d t o some degree; two s t u d i e s have been 47 completed on v a r i o u s aspects of the agency's programs (Krueckl, 1987) and Lau, 1988), the p e r t i n e n t aspects of which w i l l be reviewed i n the next chapter. T h i s t h e s i s c o n s t i t u t e s the t h i r d . The o r g a n i z a t i o n ' s a d m i n i s t r a t i o n , composed of an E x e c u t i v e D i r e c t o r , A s s i s t a n t D i r e c t o r , A d m i n i s t r a t i v e S e c r e t a r y and a F u n d r a i s e r t o o k on a c o o r d i n a t i n g , policy-making, community l i a i s o n r o l e . A l s o worthy of note, was the agency's r e c o g n i t i o n t h a t c a r e g i v e r s , t h e i r v o l u n t e e r s needed s u p p o r t , and t h e r e f o r e r e m a i n e d committed t o p r o v i d i n g the Buddy Support Group; A l l v o l u n t e e r s p r o v i d i n g homemaking or one-to-one emotional support were encouraged to a t t e n d . Persons With AIDS C o a l i t i o n The PWA C o a l i t i o n , r e c e i v i n g funds from f e d e r a l and c i t y governments f o r i n f r a s t r u c t u r e and s t a f f i n g c o s t s (but no s u s t a i n i n g funds from t h e P r o v i n c e ) i s e s s e n t i a l l y a s e l f - h e l p advocacy o r g a n i z a t i o n f o r the HIV i n f e c t e d . Aims and O b j e c t i v e s i n c l u d e : - l i f e e x t e n s i o n through group a c t i v i t i e s - t o p r o v i d e and operate a support group f o r persons with AIDS and ARC [ r e c e n t l y expanded to i n c l u d e a l l who are HIV i n f e c t e d ] - t o i n v e s t i g a t e a l t e r n a t i v e forms of therapy; d i e t , v i t a m i n s , s t r e s s r e d u c t i o n , m e d i t a t i o n , massage, p o s i t i v e t h i n k i n g , h o l i s t i c medicine, and a n t i -v i r a l drugs - t o be p o l i t i c a l advocates f o r drug r e s e a r c h i n Canada - promoting a p o s i t i v e s e l f image t o the media - networking with other c o a l i t i o n s i n North America - v i s i t i n g p a t i e n t s i n h o s p i t a l , when requested - p r o v i d i n g a speakers bureau - t o i n s t i l l t h e element of hope i n o t h e r s and 48 generate a w i l l t o l i v e (PWA C o a l i t i o n , undated). McLaren Housing S o c i e t y The McLaren Housing S o c i e t y , f o r m e r l y the Housing Committee of AIDS Vancouver, became a separate agency and managed t o open, not a hospice, as was hoped and planned, but a group home which has come t o be known as McLaren House. Supported p r i m a r i l y by a subsidy from the B.C. Housing Management Commission, the r e s i d e n c e i s f o r PWAs who cannot manage t o l i v e i n d e p e n d e n t l y b e c a u s e o f l i m i t e d f i n a n c i a l r e s o u r c e s . Home Care and Long Term Care s e r v i c e s are c a l l e d i n t o p r o v i d e s e r v i c e t o the r e s i d e n t s , as are AIDS Vancouver v o l u n t e e r s , j u s t as they are f o r PWAs l i v i n g i n t h e i r own homes. Funds f o r a h a l f - t i m e c o o r d i n a t o r and a house t h e r a p i s t are p r o v i d e d by funds from the C i t y of Vancouver. Most r e c e n t l y , t h e McLaren H o u s i n g S o c i e t y i n c o n j u n c t i o n w i t h C i t y , P r o v i n c i a l ( v i a B.C. H o u s i n g Management Commission) and F e d e r a l governments, has ac q u i r e d the c o n t r a c t (Watt, 1990) to operate a 3 2 - r e n t a l u n i t r e s i d e n c e f o r PWAs who would otherwise be unable t o f i n d a f f o r d a b l e housing. The re s i d e n c e , once a h o t e l l o c a t e d i n Vancouver's downtown core i s , i n the process of b e i n g renovated. Dawn House S o c i e t y T h i s o r g a n i z a t i o n , f o u nded by two h e a l t h c a r e workers has r e c e n t l y opened an o f f i c e , but i s o p e r a t i n g with v o l u n t e e r s and donations thus f a r . Far from being i n a p o s i t i o n to provide service as yet, the aim of the organization i s : to set up three small homes with f i v e people i n each and, as the need arises, we would l i k e to set up more homes to f a c i l i t a t e people's choice of where they want to l i v e [because] i n Vancouver there i s no place where people with AIDS can go just to be cared for or when they are going through the dying process (Nagle, 1989). To summarize about the AIDS ho s p i c e / p a l l i a t i v e care service system, a b r i e f description of programs offered by St. Paul's Hospital, the Vancouver Health Department, AIDS Vancouver, the PWA Co a l i t i o n , the McLaren Housing Society, and the Dawn House Society has been provided. Gaps i n s e r v i c e f o r PWAs in c l u d e l i m i t e d a f f o r d a b l e housing, inadequate lev e l s of home and long term care services i n the home, inadequate numbers of long term care f a c i l i t y beds, and in-patient hospice beds, to name a few. Services provided are due i n large part to f i n a n c i a l support from City and Federal governments. The gaps and inadequacies on the other hand, are due to a f a i l u r e on the part of the P r o v i n c i a l government to alloca t e adequate funds, for whatever reason, and many p o s s i b i l i t i e s have been reviewed. Only when Federal and P r o v i n c i a l governments a r t i c u l a t e a n a t i o n a l and p r o v i n c i a l h o s p i c e / p a l l i a t i v e care p o l i c y for people with a l l l i f e - t h r e a t e n i n g i l l n e s s e s , including AIDS, w i l l an integrated, planned, less haphazard array of programs be possible. 50 SUMMARY - THE RATIONALE OF THIS STUDY Thus f a r I have d i s c u s s e d the i n c i d e n c e of AIDS and HIV i n f e c t i o n , the p h i l o s o p h y and e s s e n t i a l components of h o s p i c e / p a l l i a t i v e c a r e , and t h e programs t h a t have r e s u l t e d from what amounts t o the l a c k of f e d e r a l and p r o v i n c i a l government p o l i c y f o r h o s p i c e / p a l l i a t i v e care i n g e n e r a l , and f o r persons with AIDS. H o p e f u l l y i t has been c l e a r l y communicated: (1) t h a t the AIDS epidemic i s not going away as an estimated 2,000 i n d i v i d u a l s (Rekart, 1989) who were HIV p o s i t i v e as of the summer of 1989 w i l l go on to develop AIDS or ARC, and who w i l l a l s o l i v e l o n g e r than t h e i r predecessors as a r e s u l t of drugs l i k e AZT; (2) t h a t h o s p i c e / p a l l i a t i v e care i s an a p p r o p r i a t e h e a l t h care approach f o r people with AIDS, which should be i n s t i t u t e d upon d i a g n o s i s ; and (3) t h a t f e d e r a l and p r o v i n c i a l government p o l i c i e s , or t h e l a c k of such p o l i c i e s , has r e s u l t e d i n the funding of segments of two s e p a r a t e , r a t h e r h a p h a z a r d and i n c o m p l e t e h o s p i c e / p a l l i a t i v e care s e r v i c e systems. As the c o m p e t i t i o n f o r s c a r c e resources continues, one of the best ways t o ensure the continued funding of the haphazard array of h o s p i c e / p a l l i a t i v e care programs, or t o secure i n c r e a s e d funds, e s p e c i a l l y p r i o r t o the development of government p o l i c y , i s t o e v a l u a t e programs c u r r e n t l y i n e x i s t e n c e , and t o a c t upon t h e recommendations f o r improvement. Hence the r a t i o n a l e f o r 51 conducting a program e v a l u a t i o n . D e c i d i n g t o e v a l u a t e one o f AIDS V a n c o u v e r ' s programs f i t w e l l w i t h my i n t e r e s t i n h o s p i c e / p a l l i a t i v e c a r e s i n c e t h i s o r g a n i z a t i o n o f f e r s many of the e s s e n t i a l components of h o s p i c e / p a l l i a t i v e care programs. The Buddy/Home Care Program i n p a r t i c u l a r was chosen t o e v a l u a t e because the amount of time a v a i l a b l e n e c e s s i t a t e d t h a t I narrow my focus, because i t c o n s t i t u t e d one of the l a r g e s t s i n g l e programs o f f e r e d by the Support S e r v i c e s Department of t h e o r g a n i z a t i o n , and b e c a u s e i n and o f i t s e l f i t c o n s t i t u t e s t h e v o l u n t e e r component, key t o t h e h o s p i c e / p a l l i a t i v e care approach. 52 CHAPTER TWO; RESEARCH DESIGN AND METHODOLOGY For some c l u e s as to the best way t o design and implement t h i s e v a l u a t i o n of the Buddy/Home Care Program, I surveyed the l i t e r a t u r e a v a i l a b l e . The minimal amount o f d o c u m e n t a t i o n of any k i n d about Buddy/Home Care Programs, h e a v i l y i n f l u e n c e d my d e c i s i o n t o conduct a process e v a l u a t i o n - an examination of the Program as I e n c o u n t e r e d i t o p e r a t i n g (as opposed t o an outcome e v a l u a t i o n which measures outcomes or end products of programs) - u t i l i z i n g a q u a l i t a t i v e , e x p l o r a t o r y approach. S p e c i f i c a l l y I wanted t o : (1) map the experiences of as many i n d i v i d u a l s a s s o c i a t e d with the Program as p o s s i b l e ; and (2) t o d i s c e r n the Program's inh e r e n t s t r e n g t h s and areas i n need of improvement In l i n e with the q u a l i t a t i v e , e x p l o r a t o r y nature of the s t u d y , I o p t e d t o s e l e c t PWAs and t h e i r s u r r o u n d i n g s o c i a l networks f o r t h e sample, t o i n t e r v i e w them u t i l i z i n g an i n t e r v i e w guide methodology, and t o analyze the r e s u l t a n t data a c c o r d i n g to the G l a s e r and Strauss grounded theory approach. D e t a i l s are p r o v i d e d below. A REVIEW OF THE LITERATURE Three a p p r o a c h e s were u t i l i z e d t o d i s c o v e r t h e e x i s t e n c e of o t h e r e v a l u a t i o n s o f Buddy/Home Care Programs. F i r s t , I perused AIDS Vancouver's l i b r a r y and 53 found two pieces of research. Second, I conducted a computer search at the University of B.C.'s l i b r a r y , f i n a l l y , r e p r e s e n t a t i v e s of other agencies o p e r a t i n g Buddy/Home Care Programs were contacted by telephone as a means of finding out i f any more recent or unpublished a r t i c l e s had been composed. AIDS Vancouver's Library Two studies were discovered (Krueckl, 1987; and Lau, 1988). Judy Krueckl's study, on AIDS Vancouver's own Buddy/Home Care Program, was conducted using a f a i r l y q u antitatively oriented self-administered questionnaire. The q u e s t i o n n a i r e , sent to t h i r t y PWAs who were i n receipt of services from the Buddy/Home Care Program, was returned by f i f t e e n of the PWAs. Responses to the f i r s t section of the questionnaire revealed demographic data about the PWAs such as age, domicile, length of time involved with the agency and so on. The second section asked PWAs s p e c i f i c a l l y about t h e i r buddies. What was revealed was that PWAs had at least weekly contact with t h e i r buddies, and that there was some confusion over whether buddies should and d i d give advice about alternate therapies and medical treatments. In addition, most PWAs f e l t that t h e i r buddies were easy to tal k to about emotionally charged topics such as death and dying, and encouraged them to be hopeful. The t h i r d section of the questionnaire focused on the home care component of the Program and r e v e a l e d t h a t PWAs c o u l d have d i f f e r e n t numbers of home care personnel i n v o l v e d with them, and t h a t s u c h p e r s o n n e l p r i m a r i l y p r o v i d e t r a n s p o r t a t i o n , meal p r e p a r a t i o n , housekeeping, and laundry s e r v i c e s . The Lau study (1988) was designed t o d i s c e r n how a l l of the agency's Support S e r v i c e s programs, i n c l u d i n g the Buddy/Home Care Program, were viewed by personnel working i n other agencies i n the AIDS network. In a l l , t h i r t y s t a n d a r d i z e d i n t e r v i e w s g e n e r a t i n g f a i r l y q u a n t i t a t i v e data were conducted with r e p r e s e n t a t i v e s of t e n d i f f e r e n t s e r v i c e t y p e s . The only data of re l e v a n c e t o t h i s study i s t h a t some respondents i n d i c a t e d some concern about the r e c r u i t m e n t , t r a i n i n g , and s u p e r v i s i o n o f v o l u n t e e r s , e s p e c i a l l y a r o u n d v o l u n t e e r s becoming e x c e s s i v e l y e m o t i o n a l l y i n v o l v e d , and some concern about some of the matches made between PWAs and v o l u n t e e r s . In s h o r t , these two s t u d i e s t o l d me t h a t buddies e s s e n t i a l l y p r o v i d e emotional support, and t h a t t h e r e are t h i n g s t h a t they perhaps should and should not do i n t h e i r r e l a t i o n s h i p s with PWAs. Home Care v o l u n t e e r s on t h e o t h e r hand, p r o v i d e p r a c t i c a l , i n home s u p p o r t s e r v i c e s . With r e g a r d t o both buddies and home care v o l u n t e e r s , t h e r e may be reasons f o r concern with r e g a r d t o r e c r u i t m e n t , t r a i n i n g , matching, and s u p e r v i s i o n . 55 Computer S e a r c h and t h e P o s s i b i l i t y of Unpublished Research Given the l i m i t e d amount of r e l e v a n t data p r o v i d e d by these two s t u d i e s , a thorough computer search at the U n i v e r s i t y of B.C. was conducted u t i l i z i n g the f o l l o w i n g index headings: AIDS hospice, buddy/home care or buddy s u p p o r t programs, community-based AIDS o r g a n i z a t i o n s , program e v a l u a t i o n s of community-based programs, and home c a r e o r home b a s e d programs. S o c i a l Work R e s e a r c h , P s y c h o l o g i c a l , and Index Medicus a b s t r a c t s were a l l searched f o r s t u d i e s f a l l i n g i n t o these t o p i c areas. No s t u d i e s were d i s c o v e r e d . As a l a s t r e s o r t , telephone c o n t a c t was e s t a b l i s h e d with r e p r e s e n t a t i v e s of Buddy/Home Care s e r v i c e p r o v i d e r s i n New York C i t y (B. Anderson, p e r s o n a l communication, November 1988), San F r a n c i s c o (E. Ramirez, p e r s o n a l communication, November 1988), and Toronto (S. Manning, p e r s o n a l communication, November 1988) . Once again, no f u r t h e r s t u d i e s were forthcoming. THE SAMPLE In c o n j u n c t i o n with the C l i e n t Care Case Managers who among other t h i n g s , a d m i n i s t e r e d the Buddy/Home Care Program, I deci d e d t h a t f o u r PWAs and t h e i r surrounding s o c i a l networks would be i n t e r v i e w e d . Four was chosen as an a p p r o p r i a t e number because more would be too time-consuming, but one l e s s i f someone opted out at the l a s t 56 minute, or time was running short, would s t i l l p r o v i d e me with l o t s of data. Since some of the C l i e n t Care Case Managers were concerned t h a t the task of s e l e c t i n g and c o n t a c t i n g a l l f o u r PWAs r e g a r d i n g t h e i r w i l l i n g n e s s t o p a r t i c i p a t e , not f a l l on j u s t one of them, i t was agreed t h a t they would each p u r p o s e f u l l y p e r u s e t h e i r c a s e l o a d s f o r PWAs f i t t i n g the c r i t e r i a of having a formal d i a g n o s i s of AIDS/ARC and of b e i n g i n r e c e i p t of buddy and/or home c a r e s u p p o r t . The i d e a t h e n , was t h a t names o f i n d i v i d u a l s f i t t i n g these c r i t e r i a , would be randomly s e l e c t e d from each of th r e e hats, each r e p r e s e n t a t i v e of a case l o a d . Once C l i e n t Care Case Managers had s e l e c t e d the fo u r PWAs, and had t e l e p h o n e d them t o e x p l o r e t h e i r w i l l i n g n e s s t o c o n s i d e r p a r t i c i p a t i n g i n the study, I s e n t each o f them a l e t t e r o f i n i t i a l c o n t a c t (see Appendix A f o r a sample l e t t e r ) and a l i s t o f t h e i n t e r v i e w t o p i c s . Follow up phone c a l l s a week a f t e r sending the l e t t e r s r e v e a l e d t h a t one PWA d i d not want t o take p a r t , and t h a t another was not r e c e i v i n g s e r v i c e s from the Buddy/Home Care Program. Two more PWAs from who's case l o a d s I am u n c l e a r , were chosen and subsequently agreed t o p a r t i c i p a t e . During the i n t e r v i e w s w i t h the PWAs, a l l of which were c o n d u c t e d f i r s t , b e f o r e i n t e r v i e w i n g any s o c i a l network members, I asked them t o l i s t as many people as 57 possible i n t h e i r s o c i a l networks, and to indicate who I could approach to i n t e r v i e w . PWAs recorded t h i s information along with t h e i r signatures on a "Consent for Contacting Members of Support System" form (for a sample, refe r to Appendix B). There were no lovers mentioned at a l l ; I was given permission to contact very few family members and f r i e n d s , none of whom i n the end, were available to p a r t i c i p a t e i n the study due to heavy work schedules and i l l n e s s . A fter interviewing the four PWAs, l e t t e r s of i n i t i a l contact as well as the l i s t of interview topics were sent to those I had permission to approach for interviews, and follow up phone c a l l s revealed that a l l were w i l l i n g to pa r t i c i p a t e . In t o t a l , 18 interviews were conducted. Refer to Table I: Individuals Interviewed From Each of the Four S o c i a l Networks. The t a b l e shows who was interviewed i n each s o c i a l network. Two Client Care Case Managers were interviewed about two PWAs at once, as were the House Therapist, and the House Coordinator. My main concerns about the sampling procedure are: (1) that i t was not exactly clear exactly how PWAs were selected; and (2) that no lovers, family members, or friends were included. THE INTERVIEWS AND THE INTERVIEWING TOOL Interviews were chosen as the mode of i n q u i r y because of my interest i n meeting people, and because i t 58 TABLE I: I n d i v i d u a l s Interviewed From Each of the Four S o c i a l Networks S o c i a l  Network 1 PWA Buddy Buddy S o c i a l  Network 2 PWA Buddy S o c i a l  Network 3 PWA Buddy Home Care V o l u n t e e r Case Manager House C o o r d i n a t o r House T h e r a p i s t Com.Health Nurse Case Manager Case Manager H o s p i t a l S o c i a l Worker S o c i a l  Network 1 PWA Buddy Home Care V o l u n t e e r Home Care V o l u n t e e r Case Manager House Co o r d i n a t o r House T h e r a p i s t 59 was the q u i c k e s t means of c o l l e c t i n g a l a r g e amount of b a d l y needed q u a l i t a t i v e data about what happens i n the Program. A l l i n t e r v i e w s were between one and two hours i n l e n g t h , were c o n d u c t e d wherever i n t e r v i e w e e s f e l t comfortable, and were a l l audiotaped. To conduct the i n t e r v i e w s , I opted f o r an i n t e r v i e w guide approach: [An] i n t e r v i e w g u i d e p r o v i d e s t o p i c s or s u b j e c t a r e a s w i t h i n which th e i n t e r v i e w e r i s f r e e t o e x p l o r e , p r o b e , and ask q u e s t i o n s t h a t w i l l e l u c i d a t e and i l l u m i n a t e . . . t h e i n t e r v i e w e r remains f r e e t o b u i l d a c o n v e r s a t i o n w i t h i n a p a r t i c u l a r s u b j e c t area, to word ques t i o n s spontaneously, and t o e s t a b l i s h a c o n v e r s a t i o n a l s t y l e - but with the f o c u s on a p a r t i c u l a r s u b j e c t t h a t has been predetermined...Interview guides can be developed i n more or l e s s d e t a i l , depending on the extent t o which the r e s e a r c h e r i s able t o s p e c i f y important i s s u e s i n advance (Patton, 1980, pp. 200-201) Th i s methodology allowed me to e s t a b l i s h a r a p p o r t with the i n t e r v i e w e e s , r e n d e r i n g them more r e l a x e d and g i v i n g of i n f o r m a t i o n , while at the same time a l l o w i n g as many dimensions to emerge as p o s s i b l e . Given the e x p l o r a t o r y nature of the study adopted as a r e s u l t of the l i m i t e d amount of other r e s e a r c h on Buddy/Home Care Programs, t h i s approach, as opposed t o a more s t r u c t u r e d s e r i e s of open-ended ques t i o n s seemed very a p p r o p r i a t e . To e x p l o r e i n d i v i d u a l s ' e x p e r i e n c e s i n , and s t r e n g t h s and weaknesses of the Program, the i n t e r v i e w guide, or "Topics of I n t e r e s t " as I have c a l l e d i t (see Appendix C), was made up of the f o l l o w i n g t o p i c s . Topic 1, "People Who are Supportive and H e l p f u l " was necessary t o g a i n access t o p o t e n t i a l i n t e r v i e w e e s i n the PWAs' 60 s o c i a l n e t w o r k s . T o p i c s 2 and 3, "Nature o f Your R e l a t i o n s h i p With Your " (PWA, Buddy, Home Care V o l u n t e e r , e t c . ) , and "Nature and Degree o f I n t e r a c t i o n With Buddy/Home Care S t a f f " were designed t o tap people's experiences i n these r e l a t i o n s h i p s which b a s i c a l l y summarize the context i n which the Program i s d e l i v e r e d . Topic 4, " O v e r a l l Strengths and Weaknesses of the Program" , was o b v i o u s l y designed t o get everyone's p e r c e p t u a l input i n t h i s area. And Topics 5 and 6, "Other Comments About t h e Program", and " A d d i t i o n a l Comments", were i n c l u d e d t o g e n e r a t e any e x t r a b u t p e r t i n e n t data not covered i n the other t o p i c areas. In a d d i t i o n , I u t i l i z e d a set of que s t i o n s generated i n c o n j u n c t i o n with the C l i e n t Care Case Managers as probes (see Appendix D f o r an example) i n case i n t e r v i e w e e s needed more d i r e c t i o n on what t o t a l k about than was pr o v i d e d by the Topics of I n t e r e s t . To make the most of t h e p r e v i o u s r e s e a r c h done by K r u e c k l and Lau, a l l v o l u n t e e r s were pr o b e d , among o t h e r t h i n g s , about g u i d e l i n e s f o r conduct i n t h e i r r e l a t i o n s h i p s with PWAs and the kinds of t h i n g s they do f o r PWAs, and everyone was a s k e d about v o l u n t e e r r e c r u i t m e n t , t r a i n i n g , matching, and s u p e r v i s i o n , i f they d i d not b r i n g these i s s u e s up on t h e i r own. Although i t i s u n c l e a r what k i n d of an approach would have been more e f f e c t i v e , t h e i n t e r v i e w g u i d e methodology was not without i t s problems. F i r s t , some i n t e r v i e w s were d i f f i c u l t t o get and keep focused because of the i n f o r m a l nature, and because the t o p i c s were so g e n e r a l , a l m o s t any i t e m f o r d i s c u s s i o n seemed reasonable. Second, the sheer amount of data gathered and the new probes added as a r e s u l t of experience doing each i n t e r v i e w , became overwhelming. And t h i r d , when I i n t e r v i e w e d the C l i e n t Care Case Managers and agency personnel from o u t s i d e AIDS Vancouver, I was not c l e a r whether I s h o u l d be t a l k i n g t o them about t h e i r r e l a t i o n s h i p w i t h t h e PWAs and b u d d i e s or home c a r e v o l u n t e e r s , o r about t h e i r view o f t h e r e l a t i o n s h i p between PWAs and t h e i r v o l u n t e e r s , or both (Topic 2) . S i m i l a r l y , with Topic 3, I d i d not know whether I should have asked the Outside Agency A f f i l i a t e d p e r s o nnel to d i s c u s s t h e i r r e l a t i o n s h i p s with the agency or t h e i r view of the r e l a t i o n s h i p s t h a t PWAs and v o l u n t e e r s have with the agency. T h i s l a c k of c l a r i t y - due t o the l a r g e numbers of systems i n v o l v e d - has r e s u l t e d i n v a r i a b l e and somewhat incomplete data. THE DATA ANALYSIS The i n t e r v i e w guide approach generated a mammoth amount of very v a r i a b l e q u a l i t a t i v e data. Being prepared f o r t h i s , I had decided i n advance t o u t i l i z e G l a s e r ' s d i m e n s i o n a l model (1978) o f grounded t h e o r y a n a l y s i s ( G l a s e r and S t r a u s s , 1967; and S t r a u s s , 1987). D i s c o v e r i n g the v a r i o u s dimensions comprising the Program 62 made imminent sense g i v e n t h e l a c k o f documented knowledge about the goings on i n the Buddy/Home Care Program; c o n s i d e r i n g the usage of other more s t r u c t u r e d models geared t o determining processes over time or cause and e f f e c t seemed t o me t o be premature i n the e v a l u a t i o n of a l i t t l e understood Program. U t i l i z i n g t h e d i m e n s i o n a l model t o p r e p a r e t o present the r e s e a r c h f i n d i n g s , n e c e s s i t a t e d a two step p r o c e s s : (1) f r a c t u r i n g the data i n t o f i r s t order codes by micro-coding t o f a c i l i t a t e the emergence of as many p o s s i b l e c a t e g o r i e s and dimensions as p o s s i b l e ; and (2) coding or grouping t o g e t h e r s i m i l a r f i r s t order codes t o g e n e r a t e s e c o n d o r d e r codes r e p r e s e n t i n g t h e l a r g e r themes or dimensions i n h e r e n t i n the Program. Step One - The Generation of F i r s t Order Codes To f a c i l i t a t e micro-coding and the g e n e r a t i o n of f i r s t o r d e r codes, t h e f i r s t t e n i n t e r v i e w s were completely t r a n s c r i b e d . M i c r o - c o d i n g i n v o l v e d l o c a t i n g passages w i t h i n the t e x t of each i n t e r v i e w on one t o p i c of the i n t e r v i e w guide at a time, and once l o c a t e d , a s s i g n i n g a concept or a code f o r each phrase encountered on t h a t t o p i c . These codes, w r i t t e n i n the margins i n i t i a l l y , and l a t e r l i s t e d f o r each i n t e r v i e w with the phrases from which they were d e r i v e d , were intended t o be more than summaries of the phrases; r a t h e r t h e i r p o i n t was t o i l l u m i n a t e t h e v a r i o u s d i m e n s i o n s o f t h e 63 p a r t i c u l a r t o p i c under study. T h i s process - s p a r k i n g many ideas about new and important dimensions and how they might p o s s i b l y f i t t o g e t h e r - was i n t e r r u p t e d t o r e c o r d these ideas f o r f u t u r e r e f e r e n c e . A l l of the f i r s t ten i n t e r v i e w s were micro-coded and correspo n d i n g memos were w r i t t e n f o r each t o p i c of the i n t e r v i e w guide i n the above-mentioned manner. These codes - f i r s t order codes - represent one, or the f i r s t l e v e l of a b s t r a c t i o n above the raw data. Step Two - The Generation of Second Order Codes To generate second order codes, b e g i n n i n g with the f i r s t i n t e r v i e w , I as s i g n e d the number one t o the f i r s t f i r s t order code, and continued on down the l i s t p u t t i n g " I ' s " b e s i d e other f i r s t order codes t h a t had something i n common with the f i r s t . In other words, I coded, or grouped the f i r s t order codes i n t o second order codes. T h i s process was continued u n t i l most of the f i r s t order codes had been f i t t e d i n t o a more a b s t r a c t , second order c a t e g o r y o r d i m e n s i o n f o r each o f t h e f i r s t t e n i n t e r v i e w s . In t o t a l , 21 dimensions or second order codes emerged, and were named, and d e s c r i b e d i n memos. As can be seen from F i g u r e 2: Second Order Codes Generated From the F i r s t Ten Interviews, the 21 second order codes, r e p r e s e n t i n g the second l e v e l of a b s t r a c t i o n from the raw data, n e a t l y f i t under the f i r s t f o u r t o p i c s of the i n t e r v i e w guide. 64 FIGURE 2: Second Order Codes Generated From the F i r s t Ten Interviews Topic A: People Who Are Supportive and What They Do: - Code #1: People Who Are Supportive - Code #2: Demographics of People Involved - Code #3: Degree of L i a i s o n Between Supportive People Topic B: Nature of R e l a t i o n s h i p Between Buddy and PWA: - Code #4: Agency E x p e c t a t i o n s of the R e l a t i o n s h i p -S a t i s f i e d and U n s a t i s f i e d - Code #5: Matched i n R e l a t i o n s h i p A c c o r d i n g t o a V a r i e t y of F a c t o r s of V a r y i n g Importance - Code #6: C o n c e p t i o n o f t h e R e l a t i o n s h i p V o l u n t e e r / C l i e n t , F r i e n d s h i p , P a r e n t / C h i l d - Code #7: A c t i v i t i e s O c c u r r i n g i n the V a r i o u s Types of R e l a t i o n s h i p s - Code #8: Dimensions of Commitment - Code #9: E x p e c t a t i o n s and Needs on Both Sides of the R e l a t i o n s h i p - Code #10: Endings of R e l a t i o n s h i p s T o p i c C: N a t u r e and Degree of R e l a t i o n s h i p W ith Buddy/Home Care S t a f f : - Code #11: R e l a t i o n s h i p Between .Case Managers and C l i e n t s - Code #12: Intra-Agency R e l a t i o n s h i p s - Code #13: R e l a t i o n s h i p Between Case Managers and V o l u n t e e r s - Code #14: Agency's P r o v i s i o n of Support Group f o r V o l u n t e e r s - Code #15: Agency's P r o v i s i o n o f T r a i n i n g o f V o l u n t e e r s - Code #16: R e s p o n s i b i l i t i e s of Case Managers Not D i r e c t l y R e l a t e d t o or S p e c i f i c t o C l i e n t s or V o l u n t e e r s - Code #17: De a l i n g s With the V o l u n t e e r C o o r d i n a t o r Topic D: Strengths, Weaknesses, A d d i t i o n a l Comments: - Code #18: Strengths of the Program - Code #19: Weaknesses of t h e Programs and Suggestions f o r Improvement - Code #20: Dilemmas A s s o c i a t e d With the Program - Code #21: General Comments About the O r g a n i z a t i o n as a Whole 65 The remaining e i g h t i n t e r v i e w s yet t o be analyzed were s e l e c t i v e l y t r a n s c r i b e d a c c o r d i n g t o the 21 second o r d e r codes a l r e a d y d i s c o v e r e d . Comments made by i n t e r v i e w e e s were t h e n d i v i d e d up and put under t h e a p p r o p r i a t e h e a d i n g or s e c o n d o r d e r code f o r each i n t e r v i e w . I ended up w i t h 21 s h e e t s o f p a p e r r e p r e s e n t i n g each second order code f o r each of the 18 i n t e r v i e w s . The data a n a l y s i s a l s o was not without i t s p i t f a l l s . Time d i d not permit me t o t r a n s c r i b e , code and memo immediately f o l l o w i n g the completion of each i n t e r v i e w . And as the second order codes became more, and more w e l l e s t a b l i s h e d my memoing came t o a s t a n d s t i l l u n t i l the completion and t r a n s c r i p t i o n of a l l 18 i n t e r v i e w s had been achieved. P r e p a r a t i o n f o r the P r e s e n t a t i o n of the Research F i n d i n g s To minimize b e i n g overwhelmed with the amount of data t o present and d i s c u s s , a g r i d was c o n s t r u c t e d t o e n a b l e me t o d i s c e r n which s e c o n d o r d e r codes were supported by the most data. The h o r i z o n t a l a x i s of the g r i d r e p r e s e n t e d the second order codes numbered one through twenty-one; the v e r t i c a l a x i s r e p r e s e n t e d the i n t e r v i e w s numbered one through e i g h t e e n . "X"s i n the matrix i n d i c a t e d a l a c k of f i r s t order codes r e p r e s e n t i n g the raw data f o r any g i v e n i n t e r v i e w and second order 66 code. For the most p a r t , second order codes supported by data from the m a j o r i t y of i n t e r v i e w s form the b a s i s f o r the p r e s e n t a t i o n of the r e s e a r c h f i n d i n g s focused upon i n the upcoming c h a p t e r s . The l i s t s of second order codes composed of f i r s t o rder codes from each i n t e r v i e w , generated e a r l i e r , were put s i d e by s i d e and examined t o d i s c e r n s i m i l a r i t i e s and d i f f e r e n c e s between i n t e r v i e w s a c c o r d i n g t o a p p l i c a b l e s o c i a l network c h a r a c t e r i s t i c s . Because I i n t e r v i e w e d members of s o c i a l networks, the u t i l i z a t i o n of s o c i a l network c h a r a c t e r i s t i c s - and what the l i t e r a t u r e t o date has t o say about them ( I s r a e l , 1982) - as a framework f o r understanding the f i n d i n g s and t h e i r p r e s e n t a t i o n and d i s c u s s i o n seemed very a p p r o p r i a t e . SUMMARY In t h i s c h a p t e r , I have r e v i e w e d t h e r e s e a r c h design, i t s implementation, and some of i t s more obvious i n h e r e n t l i m i t a t i o n s . The next step i s t o examine the re s e a r c h f i n d i n g s , which are pres e n t e d i n Chapters Three, Four, and F i v e . Chapter Three focuses on the s o c i a l n etworks t h e m s e l v e s and i s b a s e d p r i m a r i l y on d a t a p r o v i d e d by the PWAs. Chapter Four focuses on the nature of the r e l a t i o n s h i p s between PWAs and v o l u n t e e r s and i s based p r i m a r i l y upon data from i n t e r v i e w s with PWAs, v o l u n t e e r s , and C l i e n t Care Case Managers. And Chapter F i v e focuses on the r e l a t i o n s h i p between v o l u n t e e r s and 67 AIDS Van c o u v e r , and i s b a s e d on d a t a p r e s e n t e d by v o l u n t e e r s , and C l i e n t Care Case Managers p r i m a r i l y . Where a p p r o p r i a t e , d a t a from i n t e r v i e w s w i t h O u t s i d e Agency A f f i l i a t e d p e r s o nnel i s i n c l u d e d i n a l l th r e e c h a p t e r s . 68 CHAPTER THREE: A DESCRIPTION AND AN ANALYSIS OF THE FOUR PWAS' SOCIAL NETWORKS B e f o r e f o c u s i n g on t h e v o l u n t e e r - c l i e n t and t h e volunteer-agency subsystems i n Chapters Four and F i v e , i t makes sense t o f i r s t examine the AIDS Care System as i t operates as a whole with r e g a r d t o the f o u r PWA S o c i a l Networks. A s o c i a l network i s : a s p e c i f i c s et of l i n k a g e s among a d e f i n e d s e t of p e r s o n s w i t h t h e a d d i t i o n a l p r o p e r t y t h a t t h e c h a r a c t e r i s t i c s of these l i n k a g e s as a whole be used t o i n t e r p r e t the s o c i a l b ehavior of the person[s] i n v o l v e d . . . p e r s o n - c e n t r e d and r e f e r s t o t h e s t r u c t u r e - l i n k s i n the o v e r a l l network... - nature of l i n k a g e s themselves... and f u n c t i o n s t h a t networks p r o v i d e . . . Thus a s o c i a l network r e f e r s t o human i n t e r a c t i o n s , some or a l l of which may or may not pr o v i d e support ( I s r a e l , 1982, p. 65). To s e t t h e v o l u n t e e r - c l i e n t and v o l u n t e e r - a g e n c y subsystems i n context then, a d e s c r i p t i o n f o l l o w e d by an a n a l y s i s of each of the f o u r s o c i a l networks u s i n g the network c h a r a c t e r i s t i c s of s i z e or range, and d e n s i t y w i l l ensue. A DESCRIPTION OF THE FOUR PWA SOCIAL NETWORKS As a p r e l i m i n a r y t o d e s c r i b i n g t h e f o u r s o c i a l networks, t h r e e i s s u e s need t o be addressed: (1) the incompleteness of the data presented i n the f i g u r e s used as d e s c r i p t i v e t o o l s ; (2) t h e methodology f o r understanding the f i g u r e s ; and (3) the shortcomings of 69 the f i g u r e s themselves. The Incompleteness of the Data At t h e o u t s e t o f t h i s s t u d y , I had d e c i d e d t o u t i l i z e t h e same i n t e r v i e w g u i d e w i t h e v e r y o n e i n t e r v i e w e d , r e g a r d l e s s of whether t h e y were PWAs, Lovers, Family Members, F r i e n d s , V o l u n t e e r s , C l i e n t Care Case Managers, Outside Agency A f f i l i a t e d Personnel, or Other Supports. I n i t i a l l y t h i s made sense because the f i r s t f o u r i n t e r v i e w s were with the PWAs who I needed t o get t o d e s c r i b e t h e i r s o c i a l networks so t h a t I c o u l d g a i n a c c e s s t o o t h e r i n t e r v i e w e e s . When I began i n t e r v i e w i n g those other s o c i a l network members u s i n g the same i n t e r v i e w guide though, I n a t u r a l l y got a l o t of data about how everyone e l s e viewed the s o c i a l networks as w e l l . I continued t o c o l l e c t t h i s network data, committed to t r e a t i n g a l l i n t e r v i e w e e s s i m i l a r l y , but was u n c l e a r about what t o do with i t at the time. As a r e s u l t , I c o l l e c t e d data from everyone about the s o c i a l networks they were i n v o l v e d i n from t h e i r own unique vantage p o i n t s . Although i t has i t s gaps because of my i n i t i a l l a c k of c l a r i t y , I have attempted to make use o f i t p o s t p r i o r i , a p p l y i n g p e r t i n e n t network c h a r a c t e r i s t i c s . D e s p i t e the gaps and inadequacies, i t i s my c o n v i c t i o n t h a t I have s t i l l been able t o make some i m p o r t a n t o b s e r v a t i o n s and comments about p o s s i b l e i m p l i c a t i o n s . 70 Methodology f o r I n t e r p r e t i n g the F i g u r e s To understand how to i n t e r p r e t the diagrams of the f o u r s o c i a l networks, r e f e r t o F i g u r e 3: A Compilation of PWA S o c i a l Network One as I d e n t i f i e d by A l l Interviewed. Each diagram i s a " c o m p i l a t i o n " i n t h a t i t i s as complete a p i c t u r e of each s o c i a l network as c o u l d be achieved, by c o m p i l i n g i n f o r m a t i o n from a l l of those i n t e r v i e w e d . I t i s perhaps noteworthy t h a t not everyone i n t e r v i e w e d was e q u a l l y able t o s p e c i f y a b s o l u t e l y every support person i n v o l v e d , and i n f a c t some were not g i v e n t h e o p p o r t u n i t y ; on some occasions I began i n t e r v i e w s by s u g g e s t i n g people I had heard were i n v o l v e d j u s t t o get t h e c o n v e r s a t i o n g o i n g . U n f o r t u n a t e l y , t h i s i n c o n s i s t e n c y does not permit a comparison of "who knew about who e l s e s ' involvement". From e x a m i n i n g F i g u r e 3 and t h e key which i s i n c l u d e d ( i n a l l f o u r f i g u r e s d e p i c t i n g t h e s o c i a l networks) i t can be seen t h a t the PWA i s r e p r e s e n t e d by the c i r c l e i n the c e n t r e . C i r c l e s p a r t l y shaded by p a r a l l e l l i n e s i d e n t i f y a l l those i n d i v i d u a l s who took p a r t i n i n t e r v i e w s . There are a l s o f i v e groupings of s u p p o r t p e r s o n s a r ound t h e PWA a l s o r e p r e s e n t e d by c i r c l e s . These groupings p r e s e n t e d i n c l o c k w i s e f a s h i o n a r e L o v e r s , F a m i l y Members, F r i e n d s , AIDS V a n c o u v e r Buddy/Home Care P e r s o n n e l , O u t s i d e Agency A f f i l i a t e d Personnel, and Other Supports. In a l l of the diagrams the Buddy/Home Care Personnel always i n c l u d e C l i e n t Care Case Managers, Buddies, and any Home Care V o l u n t e e r s t h a t do not work at McLaren House. Outside Agency A f f i l i a t e d P ersonnel i n c l u d e a l l i n d i v i d u a l s mentioned by PWAs who are i n v o l v e d because of t h e i r a f f i l i a t i o n with community a g e n c i e s l i k e McLaren House, t h e M i n i s t r y o f S o c i a l S e r v i c e s and Housing, a homemaking agency, the Vancouver H e a l t h Department, and/or St. Paul's H o s p i t a l . Other S u p p o r t s i n c l u d e s e l f - e m p l o y e d i n d i v i d u a l s o r o r g a n i z a t i o n s (as opposed t o i n d i v i d u a l s ) which were mentioned as be i n g i n v o l v e d . As can be seen, the upper l e f t hand corner of the diagram was r e s e r v e d f o r the involvement of l o v e r s or p a r t n e r s . S i g n i f i c a n t l y , i n t h i s case, as w e l l as i n a l l the others, t h i s area i s blank. The d o t t e d "X" i n t h i s diagram as w e l l as i n the others, through the c i r c l e "Pre-Diagnosis F r i e n d s " i n the F r i e n d s grouping r e p r e s e n t s i n d i v i d u a l s who were, but who are no longer i n v o l v e d , but who were mentioned as members of s o c i a l networks. Some are no longer i n v o l v e d because they no longer want t o be i n v o l v e d as i n t h i s diagram, or because t h e r e i s no longer a need, or at l e a s t not f o r the moment. S o l i d l i n e "X"s i n upcoming diagrams re p r e s e n t i n d i v i d u a l s who were i n v o l v e d , but are no longer because they are deceased. The l a s t f e a t u r e of the diagram worthy of a t t e n t i o n i s the s e r i e s of l i n e s between some of the c i r c l e s , some of which have arrows, and some of which do not. The l a c k 72 of l i n e s touching the PWA's c i r c l e i s b a s i c a l l y a means of preventing confusion as i t i s assumed that the PWA has some kind of contact with everyone i n his s o c i a l network. The l i n e s represent contact that has occurred between support persons more than once, that has been deliberate as opposed to having been casual or accidental i n nature. Because the data did not permit an accurate analysis of the frequency of contact, a l l connective l i n e s are the same width. The arrows indicate the d i r e c t i o n i n which the majority of the contact was i n i t i a t e d ; arrows on both ends of the l i n e s indicate a more mutual i n i t i a t i o n of contact. The absence of arrows i s i n d i c a t i v e that there was not enough data to support any more than an assertion that there was contact occurring between people. In Figure 3 as an i l l u s t r a t i o n then, although there i s contact between the House Coordinator and the Community Health Nurse, there i s not enough data to say who i n i t i a t e s the deliberate contact most frequently, or how frequent the contact i s , while there i s data to support the claim that the House Coordinator most frequently i n i t i a t e s deliberate contact with the Cleaning Volunteers from the Residence and shares a reciprocal relationship with the House Psychotherapist. The complete absence of l i n e s and arrows indicates that there i s no data to support the c l a i m to any kind of d e l i b e r a t e contact between support persons. Many interviewees reported "bumping into" others i n the s o c i a l network, but these happenings, because of t h e i r lack of deliberateness have not been p i c t o r i a l l y represented. Limitations of the Figures Unfortunately there i s a l i m i t to how much data can be represented p i c t o r i a l l y . The Figures f a i l to capture the more q u a l i t a t i v e aspects of the relationships among i n d i v i d u a l s . Hence the need f o r the f o l l o w i n g two chapters. Other more quantitative d e t a i l s that might have been helpful to include p i c t o r i a l l y include: length of relationships, whether or not support people l i v e l o c a l l y , and so on. This kind of information where i t i s available (which i s not consistently) w i l l be included i n the descriptions of each s o c i a l network which follows. A Description of PWA Social Network One With these prefatory remarks i n mind, once again consider Figure 3: A Compilation of PWA Social Network One as I d e n t i f i e d by A l l Interviewed. This PWA i s a man i n his m i d - f i f t i e s who spent his entire pre-diagnosis l i f e " i n the c l o s e t " u n t i l h i s subsequent move i n t o McLaren House, a residence for PWAs, without f i n a n c i a l means, approximately a year before being interviewed. Evident from the diagram i s members of his Family who were mentioned: h i s mother, f a t h e r , two brothers, a s i s t e r , and an aunt. His parents, i n t h e i r seventies, brought t h e i r son home on weekends. The PWA has 74 FIGURE 3: A Compilation of PWA S o c i a l Network One as I d e n t i f i e d by A l l Interviewed LOVERS FAMILY MEMBERS OTHER SUPPORTS l Motheri 1 Fathedl Aunt j Kev I n d i v i d u a l s i n s o c i a l network = c i r c l e s I n d i v i d u a l s i n t e r v i e w e d = p a r t l y shaded c i r c l e s I n d i v i d u a l s no longer i n v o l v e d = d o t t e d "X"s Deceased i n d i v i d u a l s f o r m e r l y i n v o l v e d = s o l i d "X"s D e l i b e r a t e c o n t a c t between i n d i v i d u a l s = R e c i p r o c a l c o n t a c t between i n d i v i d u a l s = ^ One-way i n i t i a t i o n of con t a c t between i n d i v i d u a l s = ^ 75 c o n s i d e r a b l y l e s s c o n t a c t with h i s b r o t h e r s , one of whom he does not see at a l l , and h i s s i s t e r , who l i v e s i n another country, and h i s aunt. His F r i e n d s i n c l u d e other PWAs and v i s i t o r s t o the Residence, someone e l s e ' s buddy he connected with, and v i s i t o r s from h i s church. A l l but one of h i s p r e - d i a g n o s i s f r i e n d s are gone, and no one has met t h i s one. The l a c k of l i n e s i n the Family and F r i e n d s a r e a s o f t h e diagr a m r e p r e s e n t s a l a c k o f involvement of these f a c t i o n s with the more p r o f e s s i o n a l or agency types of supports. Support from AIDS Vancouver c o n s i s t s o f : one C l i e n t Care Case Manager who i s r e s p o n s i b l e f o r determining the need f o r buddies (one-to-one e m o t i o n a l s u p p o r t workers) and f o r home c a r e (homemaker type) v o l u n t e e r s , and f o r p r o v i d i n g ongoing support and s u p e r v i s i o n ; a Head Buddy; and two other b u d d i e s . Three o f t h e s e f o u r i n d i v i d u a l s were i n t e r v i e w e d . The Head Buddy has been i n v o l v e d w i t h the PWA f o r about a year, and the second and t h i r d buddies were added one a f t e r another as the PWA has become s i c k e r and l e s s independent. Although the C l i e n t Care Case Manager i s i n cont a c t with the buddies, and two of the b u d d i e s a r e i n c o n t a c t w i t h one a n o t h e r , i t i s not p o s s i b l e t o say who i n i t i a t e s i t , or how f r e q u e n t l y i t occur s . T h i s PWA has a very l a r g e number of Outside Agency A f f i l i a t e d S u p p o r t s ( 8 ) , t h r e e o f whom were i n t e r v i e w e d - the House Coor d i n a t o r , r e s p o n s i b l e f o r the smooth r u n n i n g o f McLaren House, t h e House P s y c h o t h e r a p i s t , r e s p o n s i b l e f o r p r o v i d i n g one-to-one c o u n s e l l i n g f o r the r e s i d e n t s , and a Community Hea l t h Nurse p r o v i d i n g p e r s o n a l n u r s i n g care t o the PWA f i r s t weekly, and t h e n on a d a i l y b a s i s . The House C o o r d i n a t o r has c o n t a c t w i t h t h e Head Buddy, t h e Community H e a l t h Nurse, i n i t i a t e s c o n t a c t w i t h t h e Cl e a n i n g V o l u n t e e r s from the Residence, and enjoys a r e c i p r o c a l k i n d of i n t e r a c t i o n with the House T h e r a p i s t . The Community Hea l t h Nurse, the House P s y c h o t h e r a p i s t , and the Nursing Student seem t o be the only i n d i v i d u a l s i n t h i s f a c t i o n t h a t have co n t a c t with the C l i e n t Care Case Manager, and the Community Hea l t h Nurse and C l i e n t Care Case Manager seem t o s h a r e a r e c i p r o c a l r e l a t i o n s h i p . With r e g a r d t o Other S u p p o r t s , t h e Community Hea l t h Nurse and the House Co o r d i n a t o r are the only ones who have contact with the PWA's P h y s i c i a n , while no one has any known con t a c t with the HIV+ C l i n i c at S t. Paul's H o s p i t a l , where PWAs go f o r v a r i o u s t e s t s , t h e M i n i s t e r ( s ) who p r o v i d e p a s t o r a l c o u n s e l l i n g and v i s i t s , the Masseuse, or the Persons With AIDS C o a l i t i o n , the s e l f - h e l p o r g a n i z a t i o n f o r PWAs. A t o t a l of 25 support persons or groups c u r r e n t l y compose t h i s s o c i a l network. D i s c u s s i o n of the relev a n c e of some of t h i s m a t e r i a l w i l l ensue, once a d e s c r i p t i o n of the other t h r e e s o c i a l networks i s complete. 77 A D e s c r i p t i o n of PWA S o c i a l Network Two F i g u r e 4 t h e n , r e p r e s e n t s t h e c o m p i l e d s o c i a l network f o r PWA Two. This PWA, a man i n h i s m i d - t h i r t i e s who had l i v e d "out of the c l o s e t " long b e f o r e d i a g n o s i s , had had a hig h - p r e s s u r e job i n the newspaper bus i n e s s u n t i l he was f o r c e d t o r e t i r e as he became s i c k e r with AIDS. His Family support network i s composed of members of h i s f a m i l y of o r i g i n only - h i s mother, a br o t h e r , and two s i s t e r s . H is f a t h e r d i e d about a year ago. A l l f a m i l y members l i v e i n the e a s t . I t i s unknown how much cont a c t they have with one another, but i t i s obvious from the diagram t h a t they have no cont a c t with anyone e l s e i n h i s s o c i a l network. In t h i s i n s t a n c e t h i s i s perhaps not too s u r p r i s i n g s i n c e everyone l i v e s so f o r away. His F r i e n d s c o n s i s t of a roommate, a f r i e n d from work, a f r i e n d of ten years he t a l k s Long D i s t a n c e with, a number of PWAs who are dying one by one, and h i s buddy's d a u g h t e r . AIDS V a n c o u v e r ' s Buddy/Home Care p e r s o n n e l c u r r e n t l y i n v o l v e d a r e a C l i e n t Care Case Manager, a Buddy, and a Home Care Volunteer, a l l of whom were i n t e r v i e w e d . The Buddy has some r e c i p r o c a l c o n t a c t with the C l i e n t Care Case Manager, but no cont a c t with the other v o l u n t e e r i n v o l v e d who a l s o has a r e c i p r o c a l i n t e r a c t i o n with the C l i e n t Care Case Manager. The Buddy and the Home Care V o l u n t e e r are the only ones i n the e n t i r e s o c i a l network who have any d e l i b e r a t e c o n t a c t with the PWA's F r i e n d s . Very worthy of note i s the f a c t 78 FIGURE 4: A Compilation of PWA Social Network Two as Ide n t i f i e d By A l l Interviewed LOVERS FAMILY MEMBERS OTHER SUPPORTS FRIENDS OUTSIDE AGENCY AFFILIATED PERSONNEL EDS BUDDY /MOME Kev Individuals i n s o c i a l network = c i r c l e s Individuals interviewed = pa r t l y shaded c i r c l e s Individuals no longer involved = dotted "X"s Deceased i n d i v i d u a l s formerly i n v o l v e d = Deliberate contact between individuals = Reciprocal contact between individuals = ^-One-way i n i t i a t i o n of contact between individuals = ^ s o l i d "X"s 79 t h a t t h e r e are no Outside Agency A f f i l i a t e d Personnel i n v o l v e d i n t h i s s i t u a t i o n , which i s perhaps a r e f l e c t i o n of the PWA's r e l a t i v e good h e a l t h which has p e r m i t t e d him a h i g h l e v e l of independence and s e l f - s u f f i c i e n c y . Other S u p p o r t s - h i s P h y s i c i a n , t h e P e r s o n s With AIDS C o a l i t i o n , and the HIV+ C l i n i c at St. Paul's H o s p i t a l -have no cont a c t with anyone e l s e i n the s o c i a l network, j u s t as i s the case f o r the Family f a c t i o n . A t o t a l of 15 i n d i v i d u a l s or groups of i n d i v i d u a l s - ever d e c r e a s i n g - c u r r e n t l y make up t h i s second s o c i a l network. A D e s c r i p t i o n of PWA S o c i a l Network Three S o c i a l Network Three as re p r e s e n t e d i n F i g u r e 5 has as i t s f o c u s a PWA i n h i s l a t e f o r t i e s who had a p r e s t i g i o u s c a r e e r i n the a d v e r t i z i n g b u s i n e s s . Leading a " c l o s e t e d " l i f e u n t i l d i a g n o s i s , h i s Family support comes from members of h i s f a m i l y of o r i g i n only - h i s mother, f a t h e r , and s i s t e r , a l l of whom l i v e l o c a l l y . H i s f r i e n d s h i p network c o n s i s t s o f h i s l a n d l o r d and landlady, f r i e n d s from work, and f r i e n d s from Al-anon. Support he r e c e i v e s from AIDS Vancouver's Buddy/Home Care Program i s p r o v i d e d by a C l i e n t Care Case Manager and a buddy, both of whom were in t e r v i e w e d , and both of whom have con t a c t with some f r i e n d s . Support from Outside Agency A f f i l i a t e d p e r s o nnel i s r e l a t i v e l y minimal perhaps again r e f l e c t i n g h i s r e l a t i v e l y good h e a l t h and hence independence, with a F i n a n c i a l A i d Worker and the S o c i a l 80 FIGURE 5: A Compi l a t i o n of PWA S o c i a l Network Three as I d e n t i f i e d By A l l Interviewed LOVERS FAMILY MEMBERS OTHER SUPPORTS Key I n d i v i d u a l s i n s o c i a l network = c i r c l e s I n d i v i d u a l s i n t e r v i e w e d = p a r t l y shaded c i r c l e s I n d i v i d u a l s no longer i n v o l v e d = d o t t e d "X"s Deceased i n d i v i d u a l s f o r m e r l y i n v o l v e d = s o l i d "X"s D e l i b e r a t e c o n t a c t between i n d i v i d u a l s = R e c i p r o c a l c o n t a c t between i n d i v i d u a l s = ^ ^ One-way i n i t i a t i o n of co n t a c t between i n d i v i d u a l s = } 81 Worker (interviewed) from the HIV+ C l i n i c at St. Paul's b e i n g the only i n d i v i d u a l s i n v o l v e d . These i n d i v i d u a l s have been i n con t a c t with one another, but not with anyone e l s e i n the network. In terms of other supports, a P h y s i c i a n and a P s y c h o t h e r a p i s t a r e t h e o n l y i n d i v i d u a l s p r e s e n t l y i n v o l v e d . I t i s i n t e r e s t i n g t o note t h a t t h i s PWA was the only one who i d e n t i f i e d the l a r g e number o f l e g a l and advocacy p r a c t i t i o n e r s as former members of h i s s o c i a l network. He c o n s u l t e d them immediately f o l l o w i n g d i a g n o s i s , a time he d e s c r i b e s as h i s angry phase. Hallmarks of t h i s e n t i r e s o c i a l network are the l a r g e number of advocacy o r g a n i z a t i o n s which have been i n v o l v e d , and the r e l a t i v e l a c k of c o n t a c t among i t s members, except f o r c o n t a c t i n i t i a t e d by the Buddy with the C l i e n t Care Case Manager, some k i n d of con t a c t of both the C l i e n t Care Case Manager and the Buddy with the l a n d l o r d and landlady, and some k i n d of con t a c t between the HIV+ C l i n i c S o c i a l Worker and F i n a n c i a l AID Worker. P r e s e n t l y t h e r e are a t o t a l of 12 people i n t h i s s o c i a l network. A D e s c r i p t i o n of PWA S o c i a l Network Four PWA S o c i a l Network Four as re p r e s e n t e d by F i g u r e 6 i s focused around another PWA who r e s i d e s at McLaren House. By t r a d e he was an a i r p l a n e mechanic. C u r r e n t l y 60 years of age, he l i v e d a " c l o s e t e d " l i f e p r i o r t o d i a g n o s i s . I n t e r e s t i n g l y enough, no f a m i l y of o r i g i n 82 FIGURE 6: A Compi l a t i o n of PWA S o c i a l Network Four as I d e n t i f i e d By A l l Interviewed LOVERS FAMILY MEMBERS OTHER SUPPORTS Kev I n d i v i d u a l s i n s o c i a l network = c i r c l e s I n d i v i d u a l s i n t e r v i e w e d = p a r t l y shaded c i r c l e s I n d i v i d u a l s no longer i n v o l v e d = d o t t e d "X"s Dec e a s e d i n d i v i d u a l s f o r m e r l y i n v o l v e d = s o l i d "X"s D e l i b e r a t e c o n t a c t between i n d i v i d u a l s = ; R e c i p r o c a l c o n t a c t between i n d i v i d u a l s = ^' > One-way i n i t i a t i o n of contact between i n d i v i d u a l s = T> 83 members were mentioned as p l a y i n g any r o l e i n t h i s PWA's f a m i l y support. Only a grandmother and a nephew, and one other i n d i v i d u a l were known of, and a l l of them are now dead. Support from f r i e n d s comes f o r the other r e s i d e n t s at the House, a f r i e n d of twenty years, and f r i e n d s of h i s now no n - e x i s t e n t f a m i l y . I t seems t h a t a l l p r e -d i a g n o s i s f r i e n d s are out of the p i c t u r e . Support he r e c e i v e s from AIDS Vancouver's Buddy/Home Care Program i s p r o v i d e d i n the persons of a C l i e n t Care Case Manager and a Buddy, both of whom were in t e r v i e w e d , the Buddy b e i n g the primary i n i t i a t o r of contact with the C l i e n t Care Case Manager. Agency A f f i l i a t e d P e r s o n n e l a r e a l l i n d i v i d u a l s a s s o c i a t e d with McLaren House. Once again the House C o o r d i n a t o r and the House P s y c h o t h e r a p i s t share a r e c i p r o c a l l i a i s i n g r e l a t i o n s h i p . In a d d i t i o n the House C o o r d i n a t o r i s the i n i t i a t o r of co n t a c t with the two House C l e a n i n g V o l u n t e e r s and the Buddy. The House P s y c h o t h e r a p i s t a l s o i n i t i a t e s c o n t a c t with the Buddy, who does not i n i t i a t e c o n t a c t w i t h anyone from t h e Residence. /Among the thr e e v o l u n t e e r s , only one of the House C l e a n i n g V o l u n t e e r s i n i t i a t e s c o n t a c t w i t h t h e Buddy. Other Supports i n c l u d e a P h y s i c i a n , a Masseuse, and the HIV+ C l i n i c at St. Paul's H o s p i t a l . The only s e c t o r s of t h i s s o c i a l network t h a t are i n any k i n d of con t a c t with one another are AIDS Vancouver and McLaren House. Without t h i s r e s i d e n c e , t h i s PWA would have very few i n d i v i d u a l s on whom t o r e l y . As i t i s , h i s s o c i a l 84 network i s c u r r e n t l y composed of 12 i n d i v i d u a l s . AN ANALYSIS OF THE FOUR PWA SOCIAL NETWORKS Having d e s c r i b e d each of the PWA S o c i a l Networks i n d i v i d u a l l y i t i s now p o s s i b l e t o put a l l f o u r diagrams s i d e by s i d e t o a s c e r t a i n any s i m i l a r i t i e s and d i f f e r e n c e s between them. To f a c i l i t a t e t h i s s o c i a l network a n a l y s i s , the s t r u c t u r a l network c h a r a c t e r i s t i c s of s i z e and d e n s i t y have been u t i l i z e d as the framework around which t o focus the ensuing d i s c u s s i o n : 1. RANGE - the number of d i r e c t c o n t a c t s (size) an i n d i v i d u a l has from few to many 2. DENSITY - the p r o p o r t i o n of people who c o u l d know one another ( l i n k s t h a t c o u l d e x i s t ) t o t h e p e o p l e who a c t u a l l y 'know one a n o t h e r ( l i n k s do e x i s t ) . . . ( I s r a e l , 1982, p. 67). Range or S i z e The PWA S o c i a l Networks v a r y i n t h e numbers o f i n d i v i d u a l s c u r r e n t l y comprising them; Network One (not i n c l u d i n g the PWAs) has 25 people, Network Two has 15, Network Three has 12, and Network Four has 12. Of a l l of the r e s e a r c h conducted on the connection or d egree o f a s s o c i a t i o n between i n d i v i d u a l s o c i a l network c h a r a c t e r i s t i c s , network s i z e , the l a r g e r the b e t t e r t o a p o i n t , i s the only c h a r a c t e r i s t i c p o s i t i v e l y a s s o c i a t e d with a sense of w e l l - b e i n g and h i g h h e a l t h s t a t u s ( I s r a e l , 1982; & House & Kahn, 1985) . T h i s b e i ng the case, PWA One should have had the h i g h e s t h e a l t h s t a t u s , w h i l e PWAs Three and Fo u r s h o u l d have t h e 85 lowest. In r e a l i t y , PWA One was the f i r s t and PWA Four was the second o f the f o u r PWAs t o d i e . The f a c t t h a t the PWA with the l a r g e s t network d i e d f i r s t and one with t h e s m a l l e s t d i e d s e c ond r a i s e s some i n t e r e s t i n g q u e s t i o n s about the nature of the connection between network s i z e and h e a l t h s t a t u s . What r o l e does i n c r e a s e d network s i z e a c t u a l l y p l a y ? Does i t cause h i g h e r h e a l t h s t a t u s ? Is the converse t r u e ; does good h e a l t h encourage more i n d i v i d u a l s t o become i n v o l v e d i n a network? Or i s the r e a mutually c a u s a t i v e r e l a t i o n s h i p between these two v a r i a b l e s ? My f i n d i n g s f a i l t o present a c l e a r answer. A s i d e from t h i s i s s u e of c a u s a t i o n , one of the Outside Agency A f f i l i a t e d support personnel i n PWA S o c i a l Network One commented t h a t t h e r e were "too many people i n v o l v e d " ; how does one know what the i d e a l number of i n d i v i d u a l s i n v o l v e d i s and when i t i s reached? Is i t the t o t a l number of i n d i v i d u a l s i n v o l v e d t h a t i s a s s o c i a t e d with h e a l t h s t a t u s , o r i s i t r a t h e r t h e number o f r e p r e s e n t a t i v e s from p a r t i c u l a r f a c t i o n s - f a m i l y members and f r i e n d s , as opposed t o the numbers of agency persons, f o r example, t h a t PWAs are c l o s e l y i n v o l v e d with - t h a t a f f e c t s h e a l t h s t a t u s ? In t h i s study, both PWAs who d i e d f i r s t had the s m a l l e s t f a m i l y and f r i e n d networks with whom they were very i n v o l v e d on an ongoing b a s i s . Obviously h e a l t h s t a t u s i s i n f l u e n c e d by much more than simply the numbers of people i n v o l v e d , and no doubt d i f f e r e n t numbers and p o i n t s of s a t u r a t i o n vary amongst 86 d i f f e r e n t numbers and p o i n t s of s a t u r a t i o n vary amongst t h o s e i n need o f s u p p o r t , but i t i s a p o i n t worth contemplating c o n s i d e r i n g t h a t a s i d e from the c o n v i c t i o n t h a t the more q u a l i t a t i v e network c h a r a c t e r i s t i c s have more t o do with 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 - b e i n g ( I s r a e l , 1982), the p r o p o r t i o n a t e i n f l u e n c e t h a t the more q u a n t i t a t i v e network c h a r a c t e r i s t i c s o f r e l a t i o n s h i p s have, i s e s s e n t i a l l y undetermined. The Non-Existence of P a r t n e r s In terms of numbers, c o n s i d e r a b r i e f but r e l a t e d a s i d e ; i t i s very s i g n i f i c a n t t h a t none of the f o u r s o c i a l networks c o n s i s t of l o v e r s or p a r t n e r s of any number. Although t h i s was s u r p r i s i n g i n i t i a l l y , i t now makes sense s i n c e one of the c r i t e r i a f o r PWAs t o be i n c l u d e d f o r random sampling was t h a t they be r e c e i v i n g a l o t of agency support, which i n and of i t s e l f occurs as a r e s u l t of a l a c k of i n f o r m a l support from p a r t n e r s or f a m i l y members. T h i s t o t a l l a c k of p a r t n e r involvement p r e s e n t s a r e a l problem f o r the h o s p i c e / p a l l i a t i v e care p h i l o s o p h y and f o r a g e n c i e s and p r o f e s s i o n a l s e n d e a v o u r i n g t o p r o v i d e a p p r o p r i a t e c a r e b ecause t h e e n t i r e h o s p i c e / p a l l i a t i v e c a r e a p p r o a c h as i t was o r i g i n a l l y conceived of, i s based upon the e x i s t e n c e of a primary c a r e g i v e r , a r o l e t r a d i t i o n a l l y most o f t e n f i l l e d by p a r t n e r s . Thus f a r i t has been d i s c e r n e d t h a t t h e s o c i a l networks range i n s i z e , and t h a t s i z e i t s e l f may p l a y an 87 important r o l e with regard to good h e a l t h s t a t u s . Whether network size causes high health status or vice versa, and which, i f any of the networks i n t h i s study has the right number of individuals involved to maximize optimal health i s unclear, but further research i n t h i s area could make an important contribution to improving present intervention strategies. What i s clear i s that the lack of partner involvement poses a s e r i e s of complications i n terms of service provision as o r i g i n a l l y envisioned by the h o s p i c e / p a l l i a t i v e care approach. Density In addition to network size or range, although less c o n c l u s i v e l y , d e n s i t y , or the number of i n t e r -relationships amongst people i n a network i s thought to play some kind of a role i n determining health status. Table I I : Ratios Expressed as Percentages of Total Number of Interactions Between Members of Social Networks to the T o t a l Number of P o s s i b l e I n t e r a c t i o n s , i l l u s t r a t e s s i g n i f i c a n t l y low rates of density i n a l l four of the PWA Social Networks amongst a l l categories of individuals involved. The low density associated with a l l four s o c i a l networks i s most noticeable though i n the lovers, family members, and friends categories, i n that order. The Non-Existence of Partners As was already mentioned, there were no partners 88 TABLE I I : R a t i o s E x p r e s s e d as P e r c e n t a g e s o f T o t a l Number o f I n t e r a c t i o n s Between Members of S o c i a l Networks t o t h e T o t a l P o s s i b l e Number of I n t e r a c t i o n s PWA S o c i a l Network Number T o t a l Number of I n t e r a c t i o n s T o t a l Number of P o s s i b l e I n t e r a c t i o n s % One 14 600 2.3 Two 6 210 2.9 Three 5 132 3.8 Four 7 132 5.3 Notes. (1) None of the f i g u r e s i n t h i s t a b l e i n c l u d e r e l a t i o n s h i p s or i n t e r a c t i o n s between PWAs and others i n the S o c i a l Networks as i t i s assumed t h a t the PWAs have some k i n d of i n t e r a c t i o n with everyone i n t h e i r S o c i a l Networks or they would not have been mentioned i n the f i r s t p l a c e . (2) The d e n s i t y of each network was c a l c u l a t e d by t o t a l l i n g the number of a c t u a l i n t e r a c t i o n s over the t o t a l number of p o s s i b l e i n t e r a c t i o n s , which was c a l c u l a t e d by m u l t i p l y i n g the number of persons s t i l l i n v o l v e d i n each network (exc l u d i n g the PWA) by one d i g i t l e s s . Each r a t i o was then converted t o a percentage. 89 mentioned i n the networks. Thus there i s obviously no contact between them and anyone else i n the networks. The Lack of Family Involvement With regard to the t o t a l lack of f a m i l i a l involvement, family members in Social Networks Two and Four do not l i v e l o c a l l y which pa r t l y accounts for t h e i r removed status, but what about the other two cases? Did these f a m i l i e s and/or t h e i r PWAs make a conscious decision not to be involved, or was i t assumed somewhere along the l i n e that families having d i f f i c u l t y accepting the AIDS diagnosis, would not want to be i n contact with others i n the s o c i a l networks? Is i t possible that these families could be encouraged to take more of an active role with others i n the networks, i f i t i s i n fact desirable and deemed to be contributive to the PWAs' well-being and good health? What kinds of strategies would need to be developed to make t h i s a p o s s i b i l i t y ? The Relative Lack of Friend Involvement With regard to friends, a l l of the contact occurs i n Social Networks Two and Three. Even here, friends are p r i m a r i l y only i n contact with buddies or home care volunteers. As raised i n the case of family members, i s i t advisable or not i n terms of good health status to increase density between friends and other members of the s o c i a l networks? 90 The Role of the Involvement of V o l u n t e e r s With  Others i n the S o c i a l Networks In examining F i g u r e s Three through S i x i t i s c l e a r t h a t v o l u n t e e r s - buddies and home care v o l u n t e e r s - have more c o n t a c t w i t h o t h e r s t h a n n o n - e x i s t e n t p a r t n e r s , f a m i l y members, or f r i e n d s . A l l have some con t a c t with t h e s u p e r v i s o r s , C l i e n t Care Case Managers at AIDS Vancouver, which i s of an undetermined nature, ( S o c i a l Network 1), which they i n i t i a t e ( S o c i a l Networks Three, and Four) or which i s r e c i p r o c a l ( S o c i a l Network Two) . S o c i a l Networks One and Two i n v o l v e t h r e e and two v o l u n t e e r s r e s p e c t i v e l y , the only c o n t a c t b e i n g between two of the t h r e e v o l u n t e e r s i n S o c i a l Network One. The o n l y i n v o l v e m e n t v o l u n t e e r s have w i t h O u t s i d e Agency A f f i l i a t e d p e r s o n n e l or o t h e r p r o f e s s i o n a l p e r s o n n e l occurs i n S o c i a l Networks One and Four where i n both c a s e s t h e c o n t a c t i s w i t h McLaren House employees. Wi t h i n t h i s v a r i a b i l i t y i n contact, what should the r o l e of v o l u n t e e r s be with one another, with Buddy/Home Care C l i e n t Care Case Managers, and with other agency and p r o f e s s i o n a l personnel? The Contact I n v o l v i n g A l l Agency S t a f f and Other P r o f e s s i o n a l s C o n t a c t amongst agency p e r s o n n e l and o t h e r p r o f e s s i o n a l s probably r e p r e s e n t s the realm of h i g h e s t d e n s i t y compared t o a l l t h e o t h e r c a t e g o r i e s o f i n d i v i d u a l s d i s c u s s e d thus f a r . Even so, the contact among these i n d i v i d u a l s found i n S o c i a l Networks One, Three, and Four, i s very v a r i a b l e ; some of i t i s merely c o n t a c t of an i n d e f i n a b l e nature, some i s r e c i p r o c a l , and some i s one-way. C l e a r l y , c o n t a c t seems to occur most c o n s i s t e n t l y amongst McLaren House pe r s o n n e l , and t o a l e s s e r d egree among o t h e r O u t s i d e Agency A f f i l i a t e d p e r s o n n e l . The S i g n i f i c a n c e of De n s i t y A c c o r d i n g t o  the L i t e r a t u r e In e x a m i n i n g d e n s i t y some network a n a l y s t s have found t h a t i t i s health-enhancing f o r support persons t o be i n touch with one another ( G a l l o , 1981), while others (Hirsch, 1980) have found a ne g a t i v e a s s o c i a t i o n . S t i l l o t hers ( P h i l l i p s , 1981) have d i s c o v e r e d no r e l a t i o n s h i p at a l l . I t i s p o s t u l a t e d (House and Kahn, 1985) t h a t i n d i v i d u a l s undergoing changes i n i d e n t i t y l i k e becoming widows, f o r example, b e n e f i t most from l a r g e networks with weaker t i e s , low d e n s i t y , and a h i g h degree of s o c i a l and c u l t u r a l h e t e r o g e n e i t y , while the maintenance of one's s o c i a l i d e n t i t y as a measure of w e l l - b e i n g , f o r example among i n d i v i d u a l s 60 years and over l i v i n g i n the community may best be f a c i l i t a t e d by s m a l l e r networks wit h s t r o n g t i e s , and a h i g h degree of homogeneity. I m p l i c a t i o n s of Low De n s i t y Does i t t h e r e f o r e f o l l o w , t h a t PWAs who upon d i a g n o s i s are f l u n g i n t o a s t a t e of changing r o l e s and 92 i d e n t i t y b e n e f i t most from the l a r g e network composed of a g r e a t v a r i e t y o f i n d i v i d u a l s who have v e r y l i t t l e c o n t a c t with one another? I f t h i s i s the case, then the fo u r PWA S o c i a l Networks reviewed here should be having a p o s i t i v e e f f e c t on the h e a l t h s t a t u s of the PWAs giv e n the very low d e n s i t y r a t i o s . A few ques t i o n s about t h i s though: (1) How does one know when a person, i n t h i s i n s t a n c e a PWA, moves from b e i n g i n a s t a t e of changing i d e n t i t y t o a s t a t e of m a i n t a i n i n g t h e i r c u r r e n t i d e n t i t y ? (2) Does t h i s i n r e a l i t y ever happen, or are we a l l always i n a s t a t e of f l u x with r e g a r d t o our i d e n t i t y ? and (3) Assuming t h a t i n d i v i d u a l s can make t h i s s h i f t from change t o s t a b i l i t y , how does one a d j u s t h i s / h e r s o c i a l network t o maximize a sense of well-b e i n g ? I t seems t h a t the key i s s u e here i s t h a t while the h o s p i c e / p a l l i a t i v e care p h i l o s o p h y promotes the i d e a l of the w e l l - i n f o r m e d i n t e r d i s c i p l i n a r y team of which the PWA, h i s s i g n i f i c a n t o t h e r s , v o l u n t e e r s , and o t h e r p r o f e s s i o n a l s are a l l equal members, who l i a i s e back and f o r t h , the r e a l i t y i n these f o u r s i t u a t i o n s at l e a s t i s f a r from t h i s i d e a l , and t h a t t h i s i d e a l may i n f a c t be harmful or have no e f f e c t on the h e a l t h s t a t u s of PWAs. SUMMARY . Within the c o n f i n e s of incomplete data the fo u r PWA S o c i a l Networks have been d e s c r i b e d and a n a l y z e d 93 a c c o r d i n g to the network c h a r a c t e r i s t i c s of s i z e and d e n s i t y . I t became c l e a r t h a t t h e r e may be an optimum s i z e d network. I t a l s o became c l e a r t h a t the complete absence i n numbers of PWAs' p a r t n e r s and the extremely low d e n s i t y amongst f a m i l y members and f r i e n d s , and v o l u n t e e r s and a l l O t h e r O u t s i d e Agency A f f i l i a t e d p e r s o n nel and other p r o f e s s i o n a l s t o a l e s s e r degree, r e p r e s e n t s a d i r e c t c o n t r a d i c t i o n t o t h e i n t e r d i s c i p l i n a r y team so s a c r e d t o t h e h o s p i c e / p a l l i a t i v e c a r e a p p r o a c h . In t u r n , t h i s component of the h o s p i c e / p a l l i a t i v e care model may i n a d d i t i o n be d e t r i m e n t a l to h i g h h e a l t h s t a t u s . Having looked at the f o u r systems i n t h e i r e n t i r e t y , the focus now s h i f t s t o two important subsystems - the v o l u n t e e r - c l i e n t subsystem, d e a l t with i n Chapter Four, and the volunteer-agency subsystem d e a l t with i n Chapter F i v e . 94 CHAPTER FOUR: A DESCRIPTION AND AN ANALYSIS OF THE BUDDY/HOME CARE VOLUNTEER - PWA CLIENT SUBSYSTEM DYADS H a v i n g s e t t h e s t a g e i n t h e l a s t c h a p t e r by p r o v i d i n g an o v e r a l l d e s c r i p t i o n o f t h e f o u r S o c i a l Networks, and by a n a l y z i n g them w i t h r e g a r d t o t h e network c h a r a c t e r i s t i c s of s i z e and d e n s i t y , t h i s chapter aims t o focus on one p a r t i c u l a r set of subsystems of the networks - those comprised of buddy/home care v o l u n t e e r s and PWA c l i e n t s . An a n a l y s i s of these subsystems i n terms o f t h e i n t e r a c t i o n a l and f u n c t i o n a l network c h a r a c t e r i s t i c s of f r e q u e n c y , c o n t e n t , i n t e n s i t y , r e c i p r o c i t y , and types of s u p p o r t i v e f u n c t i o n s ensues as a means of i d e n t i f y i n g areas of program s t r e n g t h s and p o s s i b l e a l t e r a t i o n s , as w e l l as r e l a t e d and v e r y r e l e v a n t q u e s t i o n s f o r f u t u r e r e s e a r c h . AGENCY EXPECTATIONS To f a c i l i t a t e t h i s a n a l y s i s i t f i r s t makes sense t o e l u c i d a t e the i d e a l , the agency's e x p e c t a t i o n s of how r e l a t i o n s h i p s between v o l u n t e e r s and c l i e n t s should work. The agency's e x p e c t a t i o n s are not documented f o r m a l l y i n any k i n d of p o l i c y statement. Thus statements made by two of the i n d i v i d u a l s - C l i e n t Care Case Managers -a d m i n i s t e r i n g t h i s p a r t i c u l a r program must be r e l i e d upon. Once the i d e a l a c c o r d i n g t o the C l i e n t Care Case 95 Managers has been d e s c r i b e d , the r e a l i t y s p e c i f i e d i n terms o f network c h a r a c t e r i s t i c s w i l l be p r e s e n t e d . Comparisons can more e a s i l y be made, which i n t u r n w i l l p r e c i p i t a t e a wide v a r i e t y o f q u e r i e s f o r f u t u r e c o n s i d e r a t i o n . What t h e n , a r e t h e C l i e n t Care Case Managers' e x p e c t a t i o n s of the r e l a t i o n s h i p s between buddy/home care v o l u n t e e r s and PWA c l i e n t s ? The S t r u c t u r a l Network C h a r a c t e r i s t i c of Frequency Only one of these s t a f f members made any comments w i t h r e g a r d t o e x p e c t a t i o n s a r o und f r e q u e n c y - t h e number of times i n c o n t a c t as w e l l as the l e n g t h of time composing each c o n t a c t : What we g i v e as a g u i d e l i n e i s t h a t t h e y [volunteers] spend at l e a s t f o u r hours a week with the person [PWA] they've been a s s i g n e d to...we never put a [maximum] i n hours...we...give them some h e l p with what they should be s e t t i n g as g u i d e l i n e s f o r themselves. We t r y t o h e l p people pace themselves a c c o r d i n g t o t h e s i t u a t i o n s t h a t t h e y f i n d themselves i n The I n t e r a c t i o n a l Network C h a r a c t e r i s t i c s of Content, I n t e n s i t y and R e c i p r o c i t y In terms of content or the number of d i f f e r e n t r o l e s or meanings (uniplex or one, or m u l t i p l e x or many) t h a t the v o l u n t e e r s might p l a y i n the s u p p o r t i v e r e l a t i o n s h i p , the e x p e c t a t i o n s are somewhat f u z z y . One C l i e n t Care Case Manager suggests t h a t the r e l a t i o n s h i p should s t a r t 96 out b e i n g of a v o l u n t e e r - c l i e n t nature, l a t e r e v o l v i n g i n t o a f r i e n d - f r i e n d r e l a t i o n s h i p : what we do encourage a t t h e b e g i n n i n g o f t h e r e l a t i o n s h i p [ i s t h a t ] the buddy be open and very m a l l e a b l e as to what k i n d of r e l a t i o n s h i p i s most s u p p o r t i v e t o the person t h e y ' r e v i s i t i n g at t h a t time. Over a long p e r i o d of time, i f the r e l a t i o n s h i p has gone on f o r a year or more, i f the r e l a t i o n s h i p i s going to s u r v i v e , t h e r e has t o be a degree of normalcy i n t r o d u c e d i n t o i t where problems a r e d e a l t w i t h i n a more normal r e l a t i o n s h i p dynamic... The buddy can't remain...a s o r t of p a s s i v e m a l l e a b l e . . . some o f t h e i r needs and...expectations... and problems t h a t might occur n a t u r a l l y i n a r e l a t i o n s h i p should get addressed R e g a r d l e s s o f how t h e y each see t h e r e l a t i o n s h i p s e v o l v i n g , b o t h C l i e n t Care Case Managers a r e i n agreement: (1) t h a t t h e s e r e l a t i o n s h i p s s h o u l d be composed of v o l u n t e e r - c l i e n t and f r i e n d - f r i e n d dynamics ( m u l t i p l e x ) ; and (2) t h a t t h e y a r e " s p e c i a l " r e l a t i o n s h i p s because of the c l o s e f r i e n d s h i p s t h a t do develop: i t ' s a s t r e n g t h t h a t [they become]... f r i e n d s h i p s ...[That's] the way i t should b e . . . t h e whole i d e a o f b e i n g a buddy i s b e i n g somebody they [the PWA] can t a l k t o and not f e e l i t ' s a burden because most people... don't want t o wear t h e i r f r i e n d s down with t h e i r u p s e t t i n g s t u f f Some o f t h e s e f r i e n d s h i p r e l a t i o n s h i p s become so e m o t i o n a l l y c l o s e t h a t buddies "sometimes... f o r g e t t h a t t h e r e i s a l i n e t h e r e " or: very o f t e n , the [PWA] w i l l request t h a t they see each o t h e r as f r i e n d s r a t h e r t h a n as. . . [budd[ies] . . . [so t h a t i f ] you go back t o t h a t c l i e n t and ask him about h i s [buddy]...he won't know who you're t a l k i n g about Thus these r e l a t i o n s h i p s sometimes become so e m o t i o n a l l y 97 charged, ( i n t e n s i t y c h a r a c t e r i s t i c ) because "when you're t a l k i n g about t h a t n e g a t i v e s t u f f and t h a t p e r s o n ' s deepest f e a r s , you're t a l k i n g about more than you would with a l o t of other people", t h a t : some of the buddies.. .have t o be t o l d t o back o f f , t h a t they're g e t t i n g too embroiled, t h e y ' r e spending t o o much tim e , t h e y ' r e not t a k i n g c a r e o f t h e m s e l v e s . . . a sense o f r e s p o n s i b i l i t y t h a t i s g r e a t e r t h a n t h e y need t o o r s h o u l d be doing...sometimes t h a t ' s t h e i r own r e s p o n s i b i l i t y and sometimes i t ' s . . . [ w h a t ] t h a t c l i e n t wants of them C l i e n t Care Case Managers t h u s r e c o g n i z e t h a t t h e r e l a t i o n s h i p s between v o l u n t e e r s and c l i e n t s can become t o o i n t e n s e and t h a t v o l u n t e e r s can become t o o e m o t i o n a l l y i n v o l v e d because of t h e i r own needs o r because of encouragement to do so by PWAs. From the statements made above i t sounds as though C l i e n t Care Case Managers attempt t o d i s c o u r a g e t h i s d egree o f i n t e n s i t y which seems l i k e a c o n t r a d i c t i o n b e c a u s e emotional involvement i s o f t e n a by-product of c l o s e f r i e n d s h i p s which are i n p a r t , the k i n d of v o l u n t e e r -c l i e n t r e l a t i o n s h i p s b e i n g encouraged. A l t h o u g h n e i t h e r C l i e n t Care Case Manager made d i r e c t comments about the i d e a of r e c i p r o c i t y or the d e g r e e o f g i v e and t a k e i n t h e s e r e l a t i o n s h i p s from b e g i n n i n g t o end, i t i s c l e a r i n d i r e c t l y at l e a s t , e s p e c i a l l y s i n c e c l o s e f r i e n d s h i p s seem t o be the i d e a l t o be s t r i v e d f o r , t h a t these r e l a t i o n s h i p s i n v o l v e some k i n d of e q u i t y i n g i v i n g and r e c e i v i n g on the p a r t of 98 both participants in each subsystem, especially i f they are long-lasting. The Functional Network Characteristics Some of the do's and don'ts with regard to the various support functions are as follows. Some examples of esteem or emotional support do's, "the provision of moral support, caring, and love" (Israel, 1982, p. 67) for the volunteers include: knowing how to l i s t e n , respecting confidentiality, lett ing the PWA c l ient set the agenda, being present throughout the i l l n e s s , hospitalizations and death, and being in touch with one's own feel ings about emotionally charged issues, l i k e death, for example. The main don'ts specified by one Of the Client Care Case Managers were that volunteers must not get involved in feuds between families of origin and lovers, and must not just drop a cl ient without proper closure occurring. It is notable that no admonition was alluded to by one of the Client Care Case Managers, who told of a buddy sharing a personal c r i s i s with the PWA he was assigned to, implying that esteem support can be a mutual experience. Informationally speaking, one of the keys mentioned for volunteers to do was to be aware of the "kinds of advocacy things they can do and what's avai lable to the i r buddy [PWA]". C l i ent Care Case Managers encouraged the instrumental functions, "the provision of tangible aid and services" (Israel, 1982, p. 67), of n o t i f i c a t i o n or l i a i s o n , keeping persons i n v o l v e d informed, and the making of r e f e r r a l s . On the other hand, c a u t i o n s were i s s u e d a r ound t h e i n s t r u m e n t a l f u n c t i o n s of g e t t i n g i n v o l v e d i n l e g a l or money matters. G e t t i n g s e x u a l l y / r o m a n t i c a l l y i n v o l v e d w i t h t h e PWA, d r i n k i n g (or a t l e a s t i n i t i a t i n g d r i n k i n g ) , smoking d r u g s , or d o i n g a n y t h i n g i l l e g a l were s o c i a l c o m p a n i o n s h i p t y p e f u n c t i o n s m e n t i o n e d t h a t a r e dis c o u r a g e d . THE REALITIES OF VOLUNTEER-CLIENT RELATIONSHIPS Given t h i s s e t of e x p e c t a t i o n s then, what i s the r e a l i t y i n t h e f r e q u e n c y , c o n t e n t , i n t e n s i t y , r e c i p r o c i t y , and s u p p o r t i v e f u n c t i o n s o f t h e v o l u n t e e r / c l i e n t subsystems? The S t r u c t u r a l Network C h a r a c t e r i s t i c of Frequency To begin to p a i n t t h i s p i c t u r e of the r e a l i t y , f i r s t c o n s i d e r t h e f r e q u e n c y (the number and l e n g t h o f contacts) with which the v o l u n t e e r s and PWAs get t o g e t h e r or have co n t a c t with one another. Keeping i n mind the f o u r hour a week p r e s c r i p t i o n , i n t h e r e l a t i o n s h i p s examined, i t seems t h a t the amount of time spent i n c o n t a c t , which c o u l d be t e l e p h o n e and/or i n p e r s o n co n t a c t v a r i e s from "once a week f o r a couple of hours", t o "two or t h r e e times a week", t o "about once a week. 100 We phone almost... every other day", t o "about twenty [hours a week]...we c o n t a c t each o t h e r e v e r y morning...nine times out of t e n we see each other f o u r or f i v e times a week". T h i s v a r i a t i o n can be a t t r i b u t e d t o a few d i f f e r e n t f a c t o r s . Some of i t can be e x p l a i n e d by the p a r t i c u l a r p o i n t i n the course of the PWA's i l l n e s s : i t ' s been Tuesday and F r i d a y n i g h t s t h a t I've gone over.. .before t h a t I j u s t dropped i n when I c o u l d but s i n c e he's been more i l l , we've had t o b a s i c a l l y t r y t o have somebody t h e r e f o r him every day and then on the weekend I came when I could, so we've b a s i c a l l y got i t down to a schedule of s o r t s . . . i t ' s o nly been s i n c e he's come down with the PCP [the AIDS r e l a t e d form of pneumonia] t h a t people have been t r y i n g t o be t h e r e around the c l o c k The amount of time wanted by the PWA i s a l s o a f a c t o r , and n a t u r a l l y t h e degree o f d e s i r e i s d i f f e r e n t f o r d i f f e r e n t i n d i v i d u a l s at d i f f e r e n t p o i n t s i n time: Time d i d n ' t seem to be the main t h i n g he needed. I t was f o r a c e r t a i n k i n d of person t o t a l k about c e r t a i n i s s u e s I don't want anyone around me t h a t only works f o u r hours. Go bother somebody e l s e . Y o u ' l l never get t o know me. You c a n ' t f e e l t h e d e p t h of my emotions, f e e l i n g s toward my f a m i l y . . . I r e a l i z e t h a t t h a t i s a l l they [buddies] have to put i n , but where w i l l they be when the crunch h i t s ? They won't even know me! I f e e l t h a t I came t o the p o i n t where I was... always t a l k i n g with [buddy]. I was p u t t i n g myself i n the v i c t i m r o l e , b e i n g the supported person The v a r i a t i o n a l s o no doubt has something t o do with the v o l u n t e e r ' s l i f e s i t u a t i o n i n terms of time c o n s t r a i n t s and p e r s o n a l d e c i s i o n s a r o u n d g i v i n g , i . e . , " r e a l l y knowing your boundaries": 101 I had a tendency to want to be t h e r e a l l the time but I...have t o be t r u e t o myself. Do I want t o do t h i s , does i t f e e l r i g h t f o r me? I t should be noted t h a t the same v a r i a t i o n s and p o s s i b l e e x p l a n a t i o n s f o r them apply t o both buddies (emotional s u p p o r t workers) as w e l l as home c a r e v o l u n t e e r s (volunteer homemakers). In f a c t although i n i t i a l l y the r o l e s of buddies and home were v o l u n t e e r s were conceived of as f u l f i l l i n g d i f f e r e n t r e s p o n s i b i l i t i e s , t h i s data and t h a t which f o l l o w s f a i l s t o s u p p o r t much o f a d i s t i n c t i o n . A comparison of the agency e x p e c t a t i o n s and what i s a c t u a l l y h a p p e n i n g i n t h e r e l a t i o n s h i p s between v o l u n t e e r s and PWAs seems t o r e v e a l t h a t f o u r hours per week i s an average amount of time b e i n g spent with more and l e s s time b e i n g spent. T h i s r a i s e s a number of important i s s u e s f o r c o n s i d e r a t i o n . F i r s t , g iven the proposed reasons, f o r the v a r i a t i o n s i n time spent i n c o n t a c t , i s i t even reasonable, or p o s s i b l e to s p e c i f y a minimum and maximum amount of time i n which to be i n c o n t a c t ? Or i s t h i s something t h a t c o u l d be n e g o t i a t e d between the v o l u n t e e r and the C l i e n t Care Case Manager, t a k i n g the needs/wants of the PWA i n t o account, so t h a t i f more i s needed than what one v o l u n t e e r can p r o v i d e , another can be i n t r o d u c e d i n t o the s i t u a t i o n ? Second, assuming t h a t i t i s d e s i r a b l e f o r the agency t o s p e c i f y the frequency/amount of c o n t a c t , would both a minimum and a maximum amount of time have t o be l a i d out? Would i t 102 s u f f i c e only t o s t i p u l a t e a maximum as a means of f o r c i n g v o l u n t e e r s t o e x e r c i s e some s e l f - p r e s e r v a t i o n and a l l o w i n g other v o l u n t e e r s t o become i n v o l v e d e a r l y enough on, p e r m i t t i n g them t o get acquainted with the PWA? This i d e a of having time t o get acquainted with persons who w i l l be se e i n g PWAs though the course of t h e i r i l l n e s s i s key; i t was mentioned by a l l of the PWAs i n t e r v i e w e d . Or i s i t a l s o necessary t o s p e c i f y the minimum amount of con t a c t t o ensure e n t h u s i a s t i c v o l u n t e e r s t h a t t h e r e i s a minimum amount o f i n t e r a c t i o n t h a t t h e y can e x p e c t ? T h i r d , i s t h e r e a means of combining the two opt i o n s of n e g o t i a t i o n of time spent perhaps with an upper maximum? What i s the impact on a l l concerned of a l l t h r e e of these p o s s i b i l i t i e s ? C u r r e n t l y , r e s e a r c h r e s u l t s on the impact of the frequency of contact on h e a l t h s t a t u s i s c o n t r a d i c t o r y ( I s r a e l , 1982), p o s s i b l y because i t i s the q u a l i t y and i n t e n s i t y of the r e l a t i o n s h i p s t h a t have more t o do with h e a l t h s t a t u s and w e l l - b e i n g t h a n t h e f r e q u e n c y and amount of time spent. I f t h i s i s indeed the case, perhaps the ch o i c e of one of the thr e e options over the others i s of l i t t l e s i g n i f i c a n c e , as long as a l l needs a r e a p p r o p r i a t e l y met and t h e r e l a t i o n s h i p s between v o l u n t e e r s and PWAs a c h i e v e t h e d e s i r e d q u a l i t y and i n t e n s i t y . The f a c t t h a t the frequency and l e n g t h of contact 103 between v o l u n t e e r s and c l i e n t s v a r i e s from l e s s than the p r e s c r i b e d f o u r hours per week, t o many more, with most cases s e t t l i n g somewhere c l o s e t o the f o u r hour a week s p e c i f i c a t i o n suggests the need f o r the agency t o look at s p e c i f y i n g more c l e a r l y minimums and maximums i n c o n j u n c t i o n w i t h e x p e c t a t i o n s t o do w i t h c o n t e n t , i n t e n s i t y , r e c i p r o c i t y , and a p p r o p r i a t e t y p e s o f s u p p o r t i v e f u n c t i o n s . I n t e r a c t i o n a l and F u n c t i o n a l Network C h a r a c t e r i s t i c s Four measures of the q u a l i t y of the r e l a t i o n s h i p s between v o l u n t e e r s and PWAs are: (1) content or the way or ways i n which h e l p e r s are c l a s s i f i e d ; (2) i n t e n s i t y i t s e l f , o r t h e degree o f e m o t i o n a l a t t a c h m e n t ; (3) r e c i p r o c i t y or the degree of g i v e and take; and (4) the types of f u n c t i o n s or a c t i v i t i e s t a k i n g p l a c e . What f o l l o w s i s f i r s t , an attempt t o d e s c r i b e t h e r e l a t i o n s h i p s a c c o r d i n g t o t h e v e r y i n t e r t w i n e d dimensions of content and i n t e n s i t y , keeping i n mind t h a t the e x p e c t a t i o n i s t h a t the r e l a t i o n s h i p s w i l l , i f gi v e n an o p p o r t u n i t y t o s u r v i v e , evolve from b e i n g v o l u n t e e r -c l i e n t t o f r i e n d - f r i e n d focused, a very c l o s e f r i e n d s h i p , b e i n g t h e o p t i m a l g o a l . A f t e r d i s c u s s i n g t h e s i g n i f i c a n c e o f t h e s e r e s u l t s , r e s u l t s w i l l t h e n be p r e s e n t e d r e g a r d i n g r e c i p r o c i t y and s u p p o r t f u n c t i o n s o c c u r r i n g , both of which w i l l a l s o be f o l l o w e d by a 104 d i s c u s s i o n . Content and I n t e n s i t y As a means of f a c i l i t a t i n g the d e s c r i p t i o n of the i n t e r t w i n e d d i m e n s i o n s o f c o n t e n t and i n t e n s i t y , an i n t e n s i t y continuum has been c o n s t r u c t e d and p i c t o r i a l l y p r e s e n t e d i n F i g u r e 7: A H y p o t h e t i c a l Continuum R e p r e s e n t i n g t h e E m o t i o n a l I n t e n s i t y o f t h e R e l a t i o n s h i p s Between Buddy/Home Care V o l u n t e e r s and PWA C l i e n t s . As an e x p l a n a t i o n of the types of r e l a t i o n s h i p s ensues, i t i s important t o remember t h a t none of the r e l a t i o n s h i p s s t u d i e d are pure types. A l l can be p l o t t e d on at l e a s t two p o i n t s on the continuum. The f a r l e f t end o f t h e continuum r e p r e s e n t s a t o t a l l a c k o f r e l a t i o n s h i p : the mere f a c t t h a t you ask f o r a support worker and t h a t you get one, d o e s n ' t mean t h a t i t ' s a u t o m a t i c a l l y going t o work o u t . . . l i k e the f i r s t one t h a t I had, I came to the p o i n t a f t e r the f i r s t few months t h a t I j u s t c o u l d n ' t s t a n d t h e [buddy] because...was j u s t too smart [and] had l i v e d through anything i n your l i f e T h i s r e l a t i o n s h i p appears t o have d i s s o l v e d because of some k i n d of " h o l i e r than thou, I know b e t t e r than you" m e n t a l i t y on the p a r t of the v o l u n t e e r . Moving t o t h e r i g h t a l o n g t h e continuum, one e n c o u n t e r s t h e v o l u n t e e r - c l i e n t r e l a t i o n s h i p , which, although ever-present, seems t o be expected t o take a b i t of a back seat t o the f r i e n d s h i p dynamic, at l e a s t i n the longer term: 105 FIGURE 7: A H y p o t h e t i c a l Continuum R e p r e s e n t i n g t h e E m o t i o n a l I n t e n s i t y o f t h e R e l a t i o n s h i p s Between Buddy/Home Care V o l u n t e e r s and PWA C l i e n t s G r e a t e r I n t e n s i t y P arent-C h i l d R e l a t i o n -s h i p Note. Most of the v o l u n t e e r - c l i e n t r e l a t i o n s h i p s f a l l w i t h i n the c o n f i n e s of, and at the g r e a t e r i n t e n s i t y , f r i e n d - f r i e n d end o f t h e t r i a n g l e on t h i s i n t e n s i t y continuum. 106 I know g o i n g t h r o u g h t h e buddy t r a i n i n g and h e a r i n g . . . from the v o l u n t e e r s themselves t h a t going through the f i n a l stages of AIDS i s l i k e having a s p i r i t u a l awakening, and t h a t ' s what I was r e a l l y keen on... I f e e l funny t h a t I d i d n ' t l e a r n t o lov e him t o the depth t h a t you hear about with the buddy r e l a t i o n s h i p . . . can't say t h a t you love t h i s guy, he's not your best f r i e n d , t h a t you wish t h a t he c o u l d be around f o r e v e r . I don't f e e l t h a t . . . I admire t h i n g s about him... I t has to be a r e a l two way t h i n g f o r a f r i e n d s h i p t o develop In t h i s case i t was the f r i e n d s h i p dynamic t h a t took the "back s e a t " p o s i t i o n . C o n t i n u i n g t o the r i g h t along the continuum, the next p o s i t i o n emerging from the data i s a r e l a t i o n s h i p which i s a m i d p o i n t between b e i n g v o l u n t e e r - c l i e n t focused and f r i e n d s h i p focused: I don't c o n s i d e r him a c l o s e f r i e n d t h a t I want t o spend a l o t of time with f o r the sake of f r i e n d s h i p , but I do enjoy the time we spend t o g e t h e r and f e e l v e r y c o m f o r t a b l e w i t h i n t h a t r e l a t i o n s h i p . . . I t ' s k i n d of h a l f way i n between [being a v o l u n t e e r and a f r i e n d ] . I t ' s k i n d of l i k e the r e l a t i o n s h i p a nurse has w i t h h e r p a t i e n t , o n l y t h e y get p a i d and v o l u n t e e r s don't...there's a comfortableness about the r e l a t i o n s h i p t h a t ' s not j u s t I'm here t o p r o v i d e a s e r v i c e and you're here t o r e c e i v e i t . I t ' s a two way s t r e e t . . . you'd have t o c a l l i t s e r v a n t . . . i t ' s k i n d of l i k e a b r o t h e r - s i s t e r r e l a t i o n s h i p without a b l o o d . . . t i e Could i t be t h a t t h i s i s the type of r e l a t i o n s h i p the C l i e n t Care Case Managers meant t o encourage? Next on t h e i n t e n s i t y c ontinuum i s t h e a r e a o f f r i e n d s h i p s which n a t u r a l l y v a r y i n t h e i r e m o t i o n a l attachment from l e s s : I cannot say [buddy] i s a . . . v e r y c l o s e f r i e n d , b u t . . . i s someone I can r e a l l y count on I'm not completely f a i r sometimes, l i k e i f I am upset about something, i f people I know have d i e d or 107 i f something i s not going w e l l . . . I w i l l j u s t s p i l l i t out on [buddy], and I f e e l sometimes t h a t i f I want a more equal r e l a t i o n s h i p I should be able t o l i s t e n as much to ' [buddy]... i n any r e l a t i o n s h i p you get something and you g i v e something. .. I'd l i k e t o be a b l e t o g i v e . . . s o m e t h i n g as w e l l . . . n o t o n l y problems t o more: we've been able to t a l k about anything with such an openness from both s i d e s t h a t we've been able to say and s h a r e a n y t h i n g and have i t a c c e p t e d and understood we're l i k e s o u l mates, we understand each other I don't t h i n k t h e r e ' s anything my buddy c o u l d want t h a t I wouldn't o f f e r him...you do have t o love the person. I can't see any other way...but then they [the C l i e n t Care Case Managers] come back and say but you c a n ' t . . . I get a l l my support from [PWA] we're j u s t f r i e n d s . L i f e goes on. I t [buddy's burn out] doesn't make any d i f f e r e n c e . Sometimes I'm s u p p o r t i n g [buddy]. As much as [buddy] i s s u p p o r t i n g me. That's the way i t works...we care f o r each other a l o t I became very e m o t i o n a l l y i n v o l v e d . I thought t h i s would be a v o l u n t e e r t h i n g and t h a t i t wouldn't become l i k e one of my own f a m i l y but he has become j u s t l i k e another one of my k i d s and...I have p a i d a t o l l because of t h i s p h y s i c a l l y and e m o t i o n a l l y The p r o g r e s s i o n along the continuum from the v o l u n t e e r -c l i e n t t o f r i e n d s h i p o r i e n t e d r e l a t i o n s h i p s i s viewed as b e i n g a " n a t u r a l p r o c e s s " by some of the v o l u n t e e r s , j u s t as i t was by one of the C l i e n t Care Case Managers: [ i f ] you spend two or t h r e e or f o u r hours every week with somebody, you're bound to make some k i n d of a r e l a t i o n s h i p , h o p e f u l l y a f r i e n d l y one we've gone from b e i n g c l e a n e r s t o more b e i n g f r i e n d s . The c l e a n i n g seems the l e a s t of i t . We do i t , but i t ' s s o r t of an excuse t o be t h e r e and t o i n t e r a c t In a d d i t i o n , i t i s almost i m p o s s i b l e t o make t h e 108 d i s t i n c t i o n between these two types of relati o n s h i p s : I don't see a separation [between being a f r i e n d and providing a se r v i c e ] . I can't do anything from my own point without being f r i e n d l y . . . I t has to be fr i e n d l y or i t ' s no service at a l l It i s perhaps important to note at t h i s point that the bulk of the r e l a t i o n s h i p s (whether they be between buddies and PWAs or home care volunteers and PWAs, since there i s no d i s t i n c t i o n with regard to in t e n s i t y and content) are situated on the volunteer-client and/or most predominantly, the f r i e n d - f r i e n d p o r t i o n of the continuum: [some] become support workers because they are lonely., .and they see i t as a way to develop a friendship...this i s very touching...but I have been aware of a few situations where the support worker was getting as much or more support than the PWA...I f e e l support workers see us as cases. ..and at the same time they want to be very close friends. . . i t ' s confused, there [are]...both behaviors happening Some of these relationships also s p i l l over on to the farthest right point on the continuum, which represents parent-child type relationships: she's a very motherly type [a buddy not interviewed] and also tends to t r y to be the savior and take on everybody's problems instead of dealing with her own... she has kids my age. I'm just l i k e one more kid, l i k e a son. every once i n a while I keep thinking i f I had needed another c h i l d , I would have had another one a buddy i s l i k e a parent who adopts a child...there i s n ' t [much time for buddy to have own l i f e ] . . .you have to dedicate yourself to the person and i t ' s l i k e adopting a c h i l d , you have to be there a l l the time Thus, the continuum complete, based on the data, extends 109 from a p o i n t of no i n t e n s i t y - n o r e l a t i o n s h i p t o a h i g h -i n t e n s i t y - p a r e n t - c h i l d dynamic p o i n t . I t seems t h a t some of the i n t e r v i e w e e s have very a p t l y a r t i c u l a t e d the reason t h a t t h i s continuum, with people s i t t i n g at two or t h r e e or f o u r of the v a r i o u s p o i n t s i n one r e l a t i o n s h i p , has come i n t o b e i n g : they [ a d m i n i s t r a t o r s of the program] never had any c l e a r concept f o r what they were doing other than p r o v i d i n g f r i e n d s . . . t h e y 7 r e not p r o v i d i n g f r i e n d s , t h e y're p r o v i d i n g v o l u n t e e r s I don't t h i n k t h e y ' v e [ v o l u n t e e r s ] had c l e a r messages [ r e : b o u n d a r i e s on buddy r e l a t i o n s h i p ] ... I'd l i k e people to be more c l e a r about t h e i r r o l e s as buddies, to know what th e y ' r e g e t t i n g i n to PWAs want d i f f e r e n t t h i n g s from t h e i r buddies, so they set those l i m i t s , but the ones t h a t j u s t open up and take you i n t o t h e i r h e a r t s , and t h a t ' s what they want, somebody to be c l o s e t o , i t ' s very t r i c k y t o do t h a t and s t i l l remain detached. . . i t ' s a very s m a l l percentage of people who can do i t n a t u r a l l y without t r a i n i n g What are the i m p l i c a t i o n s of t h i s i n t e n s i t y continuum on which a l l of the r e l a t i o n s h i p s occupy at l e a s t two and i n some cases more p o s i t i o n s , most commonly c e n t r e d around t h e v o l u n t e e r - c l i e n t , s e r v a n t , and/or f r i e n d - f r i e n d segment? F i r s t , c o n s i d e r the content of the r e l a t i o n s h i p s and the f a c t t h a t a l l of the r e l a t i o n s h i p s are composed of at l e a s t two dynamics, most commonly the v o l u n t e e r - c l i e n t and t h e f r i e n d - f r i e n d dynamic. These a r e what a r e c o n s i d e r e d t o be m u l t i p l e x r e l a t i o n s h i p s , r e l a t i o n s h i p s f u l f i l l i n g two r o l e s , and i n some cases, more. Is i t a 110 good t h i n g t h a t a l l of the r e l a t i o n s h i p s are m u l t i p l e x as opposed t o u n i p l e x , f u l f i l l i n g only one r o l e ? Research r e s u l t s on t h i s matter t o date are once again mixed ( I s r a e l , 1982) . Some i n d i c a t e t h a t m u l t i p l e x r e l a t i o n s h i p s a r e b e t t e r s o u r c e s o f s u p p o r t t h e r e b y promoting h e a l t h s t a t u s and w e l l - b e i n g , while others have found no a s s o c i a t i o n between content - u n i p l e x i t y or m u l t i p l e x i t y - and h e a l t h s t a t u s . Regardless of these v a r i a b l e f i n d i n g s , i t seems t h a t t h e s e m u l t i p l e x r e l a t i o n s h i p s found t o e x i s t c o u l d be p r o b l e m a t i c i n the in s t a n c e s i n which the v o l u n t e e r p l a y i n g the two or more r o l e s , i s the only support person i n v o l v e d , because such a s i t u a t i o n seems c o n d u c i v e t o v o l u n t e e r b u r n out, p o t e n t i a l l y n e c e s s i t a t i n g the v o l u n t e e r ' s withdrawal from the s i t u a t i o n , l e a v i n g the PWA t r u l y alone. T h i s i s the v e r y c a t a s t r o p h i c s c e n a r i o t h a t t h e program and a l l i n v o l v e d i n i t , no doubt set out t o av o i d ! Second, what about the v a r y i n g l e v e l s of i n t e n s i t y , the v a r i o u s dynamics o p e r a t i n g at d i f f e r e n t times or s i m u l t a n e o u s l y i n t h e s e r e l a t i o n s h i p s ? G i v e n t h e expected focus on a f r i e n d s h i p dynamic combined with a l e s s prominent v o l u n t e e r - c l i e n t dynamic, the r e s u l t s i n r e a l i t y seem f a i r l y c o n s i s t e n t with the e x c e p t i o n of the p a r e n t - c h i l d dynamic. Is the p a r e n t - c h i l d dynamic an a p p r o p r i a t e type of i n t e r a c t i o n i n l i g h t of the agency's mandated commitment t o the empowerment of PWAs? Should the volunteer-PWA r e l a t i o n s h i p s be f r i e n d s h i p o r i e n t e d , or v o l u n t e e r - c l i e n t oriented? How emotionally c l o s e should the volunteers be to the PWAs? This i s indeed a dilemma i n t h i s s i t u a t i o n , j u s t as i t has been and continues to be i n many of the h e l p i n g p r o f e s s i o n s . Helpers that are too close, too emotionally attached are thought to be less h e l p f u l because of a necessitated loss i n o b j e c t i v i t y , while helpers that are too emotionally distant are thought to be more objective but are often perceived as being uncaring and cold. How much of t h e i r personal selves should these volunteers be sharing with the PWAs? How objective do they need to be? Or i s the question of closeness more related to self-preservation on the part of the volunteer, than to o b j e c t i v i t y ? Should the extreme int e n s i t y i n these close friendship r e l a t i o n s h i p s be discouraged f o r the b e n e f i t of the volunteer? What would be the net e f f e c t on the PWA? Would people be as w i l l i n g to serve as volunteers under such changed circumstances, or would a d i f f e r e n t type of volunteer be attracted? Given that some f e e l that: a l o t of people who volunteer there are very needy people who are very frightened of AIDS and they're doing some kind of karma t r i p , i f I help, i t ' l l never happen to me and that i t i s reported that: a l o t of the buddies are HIV+ and I think the agency r e a l l y has to be s e n s i t i v e to that and to be s e n s i t i v e to what that i s doing to the person working with somebody with f u l l blown AIDS should a look be taken at the kinds of individuals that 112 are c u r r e n t l y b e i n g a t t r a c t e d t o be buddies or home care v o l u n t e e r s , and what they are b e i n g a t t r a c t e d t o and motivated by? In these more i n t e n s e f r i e n d s h i p s t h a t have formed, whose needs are b e i n g met, and how can t h i s , and i s t h i s b e i n g determined? And t h i r d , with the good of the agency i n mind, not t o be c a l l o u s , but pragmatic, i n the s i t u a t i o n s i n which t h e i n t e n s e r e l a t i o n s h i p s p r o c e e d t o f r i e n d s h i p s and v o l u n t e e r s leave the v o l u n t e e r ranks t o continue the f r i e n d s h i p s unsupervised, the PWA gains, which i s of course important. But what about the agency's investment of time, energy, and money t o r e c r u i t , t r a i n , s u p e r v i s e , and maintain the v o l u n t e e r ranks? H a v i n g d i s c o v e r e d an h y p o t h e t i c a l i n t e n s i t y continuum i n the data, extending from "no r e l a t i o n s h i p " , t o a " v o l u n t e e r - c l i e n t " r e l a t i o n s h i p , t o a " s e r v a n t " r e l a t i o n s h i p , t o a " f r i e n d - f r i e n d " r e l a t i o n s h i p , t o a " p a r e n t - c h i l d " r e l a t i o n s h i p , a number of q u e s t i o n s have been r a i s e d a r o und whether t h e agency's e x p e c t a t i o n s e x p r e s s e d by t h e two C l i e n t Care Case Managers a r e a p p r o p r i a t e , whether t h e emphasis on a combined v o l u n t e e r - c l i e n t , f r i e n d - f r i e n d approach which i s most e v i d e n t i s a p p r o p r i a t e , and whether t h e o r g a n i z a t i o n s h o u l d be e n d o r s i n g t h e " p a r e n t - c h i l d " t y p e r e l a t i o n s h i p s . These are important and complex questions indeed. 113 * R e c i p r o c i t y Moving on t o t h e t h i r d q u a l i t a t i v e measure o f r e l a t i o n s h i p s t o be c o n s i d e r e d - r e c i p r o c i t y - i t seems c l e a r from the words of many a l r e a d y mentioned t h a t t h e r e i s a great d e a l of r e c i p r o c i t y , of mutual s h a r i n g of emotional support i n the r e l a t i o n s h i p s , e s p e c i a l l y i n the f r i e n d - f r i e n d and p a r e n t - c h i l d dynamics. A c c o r d i n g t o I s r a e l (1982): s u b j e c t i v e or q u a l i t a t i v e c h a r a c t e r i s t i c s (e.g. i n t e n s i t y and r e c i p r o c i t y ) as i n t e r p r e t e d by the i n d i v i d u a l [are e x p e c t e d t o ] have t h e s t r o n g e s t r e l a t i o n s h i p with w e l l - b e i n g ( I s r a e l , 1982, p. 69) . T h i s b e i n g the case, the r e c i p r o c a l nature of the c l o s e f r i e n d s h i p dynamic c h a r a c t e r i z i n g the m a j o r i t y of the dyadic r e l a t i o n s h i p s can be seen as very p o s i t i v e . But i s i t e s s e n t i a l t h a t the mutual s h a r i n g t h a t c o n s t i t u t e s the r e c i p r o c i t y i n these r e l a t i o n s h i p s be a s h a r i n g of the same type of resource, i . e . emotional support? Not n e c e s s a r i l y ( P e a r l i n , 1985) . R e c i p r o c i t y can be a mutual exchange of d i f f e r e n t r esources as w e l l as s i m i l a r ones. I f r e c i p r o c i t y then, i s simply d e f i n e d as a mutual g i v i n g and r e c e i v i n g , a l e s s i n t e n s e , more v o l u n t e e r - c l i e n t o r i e n t e d approach c o u l d i n v o l v e a r e c i p r o c a l exchange t h a t i s a p p r e c i a b l e by both p a r t i e s i n v o l v e d . V o l u n t e e r s c o u l d continue t o p r o v i d e emotional or esteem and other t y p e s o f s u p p o r t ( g i v i n g ) and i n r e t u r n t h e y c o u l d continue to r e c e i v e what many r e p o r t t o r e c e i v e from the i n t e r a c t i o n s ( r e c e i v i n g ) : 114 I t ' s been... rewarding... f o r me...I a c t u a l l y f e l t better having been i n his [PWA's] company they [PWAs] learn to appreciate every day, and I think there's something rather i n s p i r i n g about being around them. It makes you sort of look at what r e a l l y i s important i n l i f e . . . I know that I am healthy and well and that l i f e i s b e a u t i f u l and that every day i s important and that r e a l l y none of us know how much longer we've got they [PWAs] r e a l l y do give...so much i n return, and even just learning t h e i r attitudes or being exposed to them i s quite a powerful thing Conversely, PWAs could continue to give according to the above testaments, and could continue to r e c e i v e the various types of support provided by volunteers. Thus, the l i t e r a t u r e p r e d i c t s that r e c i p r o c i t y , which i s a component of most of the f r i e n d - f r i e n d and p a r e n t - c h i l d r e l a t i o n s h i p types, i s health-enhancing. But since r e c i p r o c i t y does not have to be the mutual exchange of si m i l a r resources, but merely an exchange, the p o i n t i s made that v o l u n t e e r - c l i e n t o r i e n t e d relationships with an exchange of emotional support i n re t u r n f o r the i n s p i r i n g experience of having a PWA c l i e n t could be workable. Functional Characteristics The f i f t h and f i n a l q u a l i t a t i v e r e l a t i o n s h i p c h a r a c t e r i s t i c to be described and discussed has to do with the a c t i v i t i e s that occur or the various functions that the r e l a t i o n s h i p s serve. To f a c i l i t a t e an understanding of the ensuing d e s c r i p t i o n / d i s c u s s i o n , r e f e r to Figures 8 through 12: "Common 115 F u n c t i o n s Present i n the R e l a t i o n s h i p s " As can be seen, t h e r e a r e f i v e d i f f e r e n t t y p e s o f s u p p o r t f u n c t i o n s o c c u r r i n g i n t h e r e l a t i o n s h i p s : esteem o r e m o t i o n a l s u p p o r t , i n f o r m a t i o n a l s u p p o r t , i n s t r u m e n t a l s u p p o r t , companionship support, and m o t i v a t i o n a l support. Esteem or Emotional Support P r o c e e d i n g t h r o u g h F i g u r e 8, t h e f i r s t s u p p o r t f u n c t i o n , t h a t o f e m o t i o n a l o r esteem s u p p o r t i s c h a r a c t e r i z e d i n the r e l a t i o n s h i p s examined, by fou r sub-f u n c t i o n s p r o v i d e d by someone who: (1) i s presen t t o t a l k with; (2) w i l l l i s t e n ; (3) can be t r u s t e d , be c o n f i d e n t i n ; and (4) w i l l understand. A l l fo u r s u b - f u n c t i o n s but (2) someone who w i l l l i s t e n , are evident i n a l l of the r e l a t i o n s h i p s , mentioned by e i t h e r or both p a r t i e s i n the dyad. Although someone who w i l l l i s t e n does not appear i n the data as c o n s i s t e n t l y , i t i s t h e r e s p e c i f i c a l l y t o some degree, and i s probably assumed t o be of importance as evidenced by more i n d i r e c t comments. I t i s perhaps important t o note i n t h i s s et of f u n c t i o n s t h a t once again i t appears t h a t home care v o l u n t e e r s do not j u s t do home care or p r o v i d e i n s t r u m e n t a l support. A r e c u r r e n t theme through a l l the data i s t h a t they have the same k i n d s o f r e l a t i o n s h i p s w i t h t h e PWAs as do b u d d i e s , c h a r a c t e r i z e d by t h e i r p r o v i s i o n of the same kinds of support, i n c l u d i n g emotional/esteem support. I t i s a l s o noteworthy while l o o k i n g at the comments made t h a t are r e p r e s e n t a t i v e of emotional/esteem support - and indeed FIGURE 8: Common Esteem or Emotional Support Functions Present i n the R e l a t i o n s h i p s - someone who i s present to t a l k w ith: - "sometimes I j u s t s p i l l out e v e r y t h i n g I have" - "we t a l k " - "she c a l l s me q u i t e f r e q u e n t l y t o check up" - "my only concern i s whether we have communicated about e v e r y t h i n g t h a t ' s important" - " t a l k over how I f e e l " - "that t h e r e i s someone t h e r e who cares f o r him" - "there's t h i n g s they'd l i k e t o d i s c u s s " - "we've j u s t t a l k e d r a t h e r than my doing c l e a n i n g " - "mostly they j u s t s i t and t a l k " - "ask how t h i n g s are" - someone who w i l l l i s t e n : - " l i s t e n t o him" - "she l i s t e n s very w e l l " - "I t h i n k i t ' s r e a l l y important to l i s t e n " - someone who can be t r u s t e d , be c o n f i d e n t i n : - "they've taught me a l o t on how t o t r u s t " - "one person I can r e a l l y count on" - "someone he c o u l d t r u s t " - "mutual t r u s t t h e r e " - "you must get t h e i r t r u s t and l o v e " - " i t took a while t o win...confidence" - someone who w i l l understand: - "so t h a t you'd understand what people are going through when they're i n c a p a c i t a t e d " - " i t ' s more t o empathize than sympathy" - "to be non-judgmental" - "she understands... i t ' s great t o know t h a t I can c a l l her when I need her without f e e l i n g t h a t I'm a user of people" - "the communication i s very open" - "love and acceptance are a very powerful t o o l " - "I j u s t t r i e d t o be where he was at and t h a t changed from time to time. I f he was sad then I would be sad. . .not t r y t o change him but j u s t support him where he was" 117 while l o o k i n g f u r t h e r on at the comments l i s t e d under the other support f u n c t i o n s - t h a t t h e r e are f u n c t i o n s t a k i n g p l a c e t h a t e x c e e d t h e v o l u n t e e r / c l i e n t boundary, and s p i l l o v e r onto more f r i e n d - f r i e n d r e l a t i o n s h i p s , r e f l e c t i n g i n p a r t the r e l a t i o n s h i p i n t e n s i t y continuum d e s c r i b e d e a r l i e r on. For example one of the comments makes a r e f e r e n c e to the d i s t i n c t i o n between sympathy ( a t t r i b u t a b l e more t o a f r i e n d s h i p dynamic), and empathy ( a t t r i b u t a b l e more t o a v o l u n t e e r - c l i e n t dynamic). A l l i n a l l , the esteem/emotional support f u n c t i o n s are p r e t t y much i n keeping with the a d m i n i s t r a t i v e e x p e c t a t i o n s . The emotional support f u n c t i o n s of b e i n g p r e s e n t t o t a l k w i t h , o f b e i n g t r u s t w o r t h y , and o f b e i n g understanding were a l l found i n a l l the r e l a t i o n s h i p s . L i s t e n i n g was a l s o f o u n d t o be p r e s e n t i n t h e r e l a t i o n s h i p s at l e a s t some of the time. The presence of these v o l u n t e e r - c l i e n t type f u n c t i o n s are i n l i n e with C l i e n t Care Case Manager e x p e c t a t i o n s , as are the other confused emotional support f u n c t i o n s of sympathy ( f r i e n d -f r i e n d o r i e n t e d ) v e r s u s empathy ( v o l u n t e e r - c l i e n t o r i e n t e d ) . I n f o r m a t i o n a l Support Looking now t o the i n f o r m a t i o n a l support f u n c t i o n s , (Figure 9) which are not found q u i t e as p r e v a l e n t l y i n t h e r e l a t i o n s h i p s as t h e e s t e e m / e m o t i o n a l s u p p o r t f u n c t i o n s , t h e r e appear to be two major s u b - f u n c t i o n s 118 FIGURE 9: Common I n f o r m a t i o n a l S u p p o r t Present i n the R e l a t i o n s h i p s F u n c t i o n s - someone who w i l l get i n f o r m a t i o n from o t h e r s : - "get r e f e r r a l s " - " i f you can't help them, then you f i n d out where you can get the h e l p " - someone who g i v e s advice or suggestions, s o l i c i t e d or otherwise: - "He teaches me...he g i v e s me a rap on the knuckles i f I get o f f the beaten path" - "I d i d encourage him...to make a w i l l " - "I'm not th e r e t o l e c t u r e you on what i s good f o r you and what i s n ' t good f o r you" - "I can make suggestions, but t h a t ' s a l l I can do" - "he needs t o h e a r what he i s c o p i n g w i t h i s h o r r i b l e " - "I a c t u a l l y t o l d him once t h a t I r e a l i z e d t h a t he had had a l o n e l y l i f e and t h a t i t ' s been r e a l l y hard on him and t h a t I a l s o thought with h i s remaining time t h a t he was never going t o make up f o r t h a t l o n e l i n e s s " - I t o l d him t h a t l i n e too., because as f a r as I'm concerned, i t was b e t t e r f o r him t o stay at home than t o go i n t o the h o s p i t a l " - "He l i k e s t o go i n t o these p i t y p a r t i e s . . . one day I s a i d , 'why don't you d i e and get i t o v e r with?'...so from then on anytime he's t r i e d t o p u l l a p i t y p a r t y on me, I've j u s t looked him i n the eye and s a i d , "Do I need t o use my l i n e on you?'" - "she was down on why I sacked the d o c t o r " - "yes your d o c t o r expects you t o d i e with t h i s t h i n g " 119 p r o v i d e d by someone who: (1) w i l l get i n f o r m a t i o n from o t h e r s ; and (2) g i v e s advice or suggestions, s o l i c i t e d or otherwise. Sometimes v o l u n t e e r s p r o v i d e i n f o r m a t i o n i n t h e form o f s u g g e s t i o n s t h a t i s q u i t e h e l p f u l l i k e s u g g e s t i n g t h a t the PWA complete a w i l l , f o r example. Of concern though are the i n s t a n c e s i n which some advice i s gi v e n t h a t may not have been asked f o r , or t h a t i s t o do with a PWA's cho i c e of c a r e g i v e r s , c h o i c e of whether t o be i n the h o s p i t a l or at home to d i e , or t h a t i s p u n i t i v e i n nature. Are t h e r e some areas i n which v o l u n t e e r s should and should not be g i v i n g advice? Should they be g i v i n g advice at a l l , e s p e c i a l l y i f i t i s u n s o l i c i t e d ? I t may be r e c a l l e d , t h a t the i m p o s i t i o n o f one's own agenda was one i n f o r m a t i o n a l f u n c t i o n C l i e n t Care Case Managers s p e c i f i c a l l y mentioned as needing t o be guarded a g a i n s t . Thus, i n f o r m a t i o n a l support i n the form of be i n g w i l l i n g t o he l p secure i n f o r m a t i o n and i n the g i v i n g of advice i s common. There i s concern t h a t some of the advice i s u n s o l i c i t e d by PWA c l i e n t s , which c o n s t i t u t e s a v i o l a t i o n of the s t a f f e x p e c t a t i o n s warning v o l u n t e e r s a g a i n s t the i m p o s i t i o n of t h e i r own agendas. Instrumental or P r a c t i c a l Support The t h i r d s et of support f u n c t i o n s , the i n s t r u m e n t a l s u p p o r t f u n c t i o n s ( F i g u r e 10) a r e e v i d e n c e d i n t h e r e l a t i o n s h i p s about as p r e v a l e n t l y as t h e esteem/emotional support f u n c t i o n s and are c h a r a c t e r i z e d 120 FIGURE 10: Common Instrumental Support F u n c t i o n s Present i n the R e l a t i o n s h i p s - someone who p r o v i d e s p r a c t i c a l support: - "she p i c k s s t u f f up f o r me at the s t o r e " - "[buddies] w i l l d r i v e me anywhere" - "The only way he would f e e l t h a t he c o u l d have any decent r e s t was f o r you t o g i v e him an a t i v a n " - "so we deci d e d t h a t i t was my r e s p o n s i b i l i t y t o c a l l these people" - "I had t o change d i a p e r s " - " I f I come by and he's run out of a t i v a n , I ' l l go get i t " - " i n a c t i n g as a l i a i s o n " - "I gave [buddy] power of a t t o r n e y " - "[buddy] h e l p f u l i n b r i n g i n g s t u f f . . . [ s o ] t h a t I wouldn't have t o buy a vacuum c l e a n e r , and I wouldn't have t o buy t h i s and t h a t " - "someone t o do the c l e a n i n g and laundry" - "we d i d take s h i f t s " 121 by such a c t i v i t i e s as the p r o v i s i o n of t r a n s p o r t a t i o n , p e r s o n a l / m e d i c a l c a r e , s e r v i c e s i n terms o f r u n n i n g errands, household chores, n o t i f i c a t i o n and l i a i s o n , as w e l l as the assumption of l e g a l r e s p o n s i b i l i t i e s such as b e i n g e x e c u t o r s o f w i l l s and e x e r c i s i n g power o f at t o r n e y . F u n c t i o n s o c c u r r i n g are once again w i t h i n c l o s e range of the o r i g i n a l e x p e c t a t i o n s with one major e x c e p t i o n . The a s s u m p t i o n o f l e g a l r e s p o n s i b i l i t i e s , d e s p i t e c a u t i o n s a g a i n s t t h i s , r a i s e s the q u e s t i o n of how i n d i s c r e t i o n s are addressed and d i s c o v e r e d . And are the p o l i c i e s f o r everyone or not? Should t h e r e be some f l e x i b i l i t y ? In terms of pe r s o n a l / m e d i c a l care, i t seems t h a t Buddy/Home Care s t a f f e x p e c t a t i o n s are not even a l l u d e d t o though. Are C l i e n t Care Case Managers aware t h a t v o l u n t e e r s are d i s p e n s i n g medication and changing d i a p e r s ? Are these the kinds of f u n c t i o n s v o l u n t e e r s should be f u l f i l l i n g ? I t seems t h a t t h e r e c o u l d be some a s s o c i a t e d l e g a l i m p l i c a t i o n s . Companionship Support The f o u r t h type of support f u n c t i o n obvious i n the r e l a t i o n s h i p s i s t h a t of companionship support (Figure 11) . Once again, the l i n e between the v o l u n t e e r - c l i e n t and f r i e n d s h i p focused dynamics becomes fuzzy e s p e c i a l l y with r e g a r d t o the p o s s i b i l i t y of v o l u n t e e r s going on v a c a t i o n w i t h PWAs, e x c h a n g i n g g i f t s , l y i n g i n bed together, and PWAs going t o the homes of v o l u n t e e r s . Once again, the i n t e n s i t y i s s u e . 122 FIGURE 11: Common Companionship Su p p o r t F u n c t i o n s Present i n the R e l a t i o n s h i p s - someone to do s o c i a l t h i n g s with: - " I ' l l ask [buddy] i f . . . w a n t s t o go [on a t r i p t o H a r r i s o n ] " - "someone t o go t o the c l u b s with" - "I l i k e the v i s i t o r s " - "we have a few laughs" - "[make i t ] very c l e a r t h a t they weren't i n t e r e s t e d i n him r o m a n t i c a l l y " - "we were t a k i n g t u r n s with s h i f t s j u s t t o keep him company" - "we go f o r a d r i v e " - "they l i k e doing t h i n g s t o g e t h e r l i k e going out t o movies or out f o r d i n n e r " - " d r i n k a few beers, I don't do t h a t with [buddy] 1 1 - "see [buddy's] p l a c e " - "I accepted him i n t o my f a m i l y " - "we hug each other, we k i s s each other h e l l o and good bye" - c l o s e f r i e n d s . . . h a v e met [buddy] - "[exchange] g i f t s " - "she would l a y i n bed with him i n the h o s p i t a l and h o l d him i n her arms" - "[buddy] had him over f o r Christmas d i n n e r " 123 M o t i v a t i o n a l Support The f i f t h and f i n a l form of support d i s c e r n e d i n the r e l a t i o n s h i p s ( F i g u r e 12) i s m o t i v a t i o n a l s u p p o r t . M o t i v a t i o n a l support i s comparatively n o n - e x i s t e n t i n the r e l a t i o n s h i p s with the q u o t a t i o n s g i v e n i n F i g u r e 12 b e i n g the only examples found from examining a l l of the i n t e r v i e w s . The two themes emerging from t h i s b r i e f l i s t have t o do with m o t i v a t i o n as more of an a t t i t u d e or s t a t e of mind, and m o t i v a t i o n with r e g a r d t o s p e c i f i c a c t i v i t i e s . The obvious q u e s t i o n here seems t o be: i s i t r e a s o n a b l e t h a t t h i s t y p e of f u n c t i o n i s f o u n d so s p a r i n g l y i n the r e l a t i o n s h i p s ? H a v i n g r e v i e w e d t h e v a r i o u s t y p e s o f e s t e e m / e m o t i o n a l , i n f o r m a t i o n a l , i n s t r u m e n t a l , companionship, and m o t i v a t i o n a l support f u n c t i o n s p r e s e n t i n the dyads, the key q u e s t i o n f o r c o n s i d e r a t i o n i s : are these the kinds of t h i n g s t h a t C l i e n t Care Case Managers, want t h e i r v o l u n t e e r s t o be doing? I f yes, why? I f not, why n o t ? In o t h e r words, a r e t h e i r e x p e c t a t i o n s a p p r o p r i a t e l y f i t t e d t o the s i t u a t i o n at hand? And, are t h e y c l e a r l y enough s t a t e d and communicated t o t h e v o l u n t e e r s ? SUMMARY To e n c a p s u l a t e , t h e e x p e c t a t i o n s o f t h e a d m i n i s t r a t o r s of the Buddy/Home Care Program have been r e v i e w e d , and compared w i t h t h e r e a l i t i e s o f t h e 124 FIGURE 12: Common M o t i v a t i o n a l Support F u n c t i o n s Present i n the R e l a t i o n s h i p s - " b r i n g i n good energy and p o s i t i v e t h i n k i n g " - "keeps me d r i v i n g " - "He keeps me s t e e r i n g s t r a i g h t " - "Can you manage i t on your own?" - "One way [PWA] e x p l a i n e d i t was t h a t when he was he a l t h y and e n e r g i z e d I was j u s t the needle t o get him moving" 125 r e l a t i o n s h i p s between v o l u n t e e r s - buddies and home care v o l u n t e e r s a l i k e - and c l i e n t s i n terms of the frequency, content, i n t e n s i t y , r e c i p r o c i t y , and support f u n c t i o n s . With only a few e x c e p t i o n s , the r e l a t i o n s h i p s have met t h e e x p e c t e d outcomes. W i t h o u t a doubt, t h e s e r e l a t i o n s h i p s are c o n s i d e r e d t o be extremely v a l u a b l e , c r u c i a l s o u r c e s o f s u p p o r t . There a r e a number o f q u e s t i o n s t h a t have been r a i s e d however, t h a t w i t h c a r e f u l c o n s i d e r a t i o n have the p o t e n t i a l t o improve the q u a l i t y of the r e l a t i o n s h i p s f o r a l l concerned, thereby making t h i s very v i a b l e program even s t r o n g e r and more e f f e c t i v e . These q u e s t i o n s c e n t r e a r o u n d : (1) t h e a p p r o p r i a t e n e s s of agency e x p e c t a t i o n s ; (2) the number and l e n g t h of c o n t a c t s between v o l u n t e e r s and c l i e n t s ; (3) t h e a p p r o p r i a t e n e s s o f t h e v a r i o u s r e l a t i o n s h i p dynamics which have emerged; (4) t h e exchange o f emotional support; (5) the assumption of l e g a l r o l e s , the g i v i n g of u n s o l i c i t e d advice; (6) the e x c e s s i v e n e s s of the companionship f u n c t i o n s ; and (7) the apparent l a c k of m o t i v a t i o n a l support f u n c t i o n s p r e s e n t . 126 CHAPTER FIVE: A DESCRIPTION AND AN ANALYSIS OF THE BUDDY/HOME CARE VOLUNTEER - AGENCY SUBSYSTEM T h i s chapter s h i f t s the focus from the r e l a t i o n s h i p between v o l u n t e e r s and c l i e n t s t o the volunteer-agency subsystem - the r e l a t i o n s h i p between v o l u n t e e r s and AIDS Vancouver, t h e o r g a n i z a t i o n f o r which t h e y p r o v i d e s e r v i c e . In r e l a t i n g t o the agency, v o l u n t e e r s i n t e r a c t with the V o l u n t e e r C o o r d i n a t o r , the Core T r a i n i n g and i n -s e r v i c e s s p e c i f i c t o b e i n g buddy/home care v o l u n t e e r s , the Buddy/Home Care C l i e n t Care Case Managers, and the Buddy Support Group. An examination and d i s c u s s i o n of these p o i n t s of c o n t a c t ensues, once again u s i n g some network a n a l y s i s concepts as a framework. S p e c i f i c a l l y the network c h a r a c t e r i s t i c s of frequency, r e c i p r o c i t y , esteem or emotional support, i n f o r m a t i o n a l support, and content w i l l be u t i l i z e d . FREQUENCY Frequency i n t h i s chapter r e f e r s t o the number and l e n g t h of i n t e r a c t i o n s between the v o l u n t e e r s and the agency v i a the C l i e n t Care Case Managers and the Buddy Support Group. Contact with C l i e n t Care Case Managers ranges from "three times s i n c e I j o i n e d two years ago", t o "once i n a w h i l e " , t o "once p e r month", w i t h an emphasis i n most c a s e s on l e s s f r e q u e n t c o n t a c t . 127 Involvement i n the Buddy Support Group, which i s open t o b u d d i e s and home c a r e v o l u n t e e r s , a l s o v a r i e s from " r e g u l a r " attendance, t o "once i n awhile", to "I've only been t o two...meetings", t o "drop[ping] out". As one of the C l i e n t Care Case Managers s t a t e s , dropping out seems t o be a n a t u r a l c u l m i n a t i o n of t h i s p r o g r e s s i o n : t h e r e tends to be a l o t of i n t e r e s t i n the group and t h e r e ' s a f a i r l y decent turnout f o r the f i r s t few meetings, then people drop out because they aren't a s s i g n e d or because t h e y ' r e doing the work and they f e e l t h a t t h i s i s something e x t r a M o n o p o l i z a t i o n by a few p a r t i c u l a r l y v o c a l i n d i v i d u a l s and a p r e f e r e n c e f o r one-to-one support as opposed t o group support, as suggested by one of the C l i e n t Care Case Managers, might a l s o h e l p t o a c c o u n t f o r t h i s dropping out tendency: I o f t e n wonder i f i t i s n ' t t h a t t h e y ' r e [buddies] s p e n d i n g a l o t o f t i m e w i t h t h e i r b u d d i e s [PWA c l i e n t s ] and can't stand the thought of going t o j u s t another meeting. They're o b v i o u s l y not g e t t i n g enough from t h e m e e t i n g s . . . i t ' s j u s t a n o t h e r o b l i g a t i o n i n s t e a d of the support which i s what we want them t o be. . . I t h i n k t h e y want one-to-one support r a t h e r than group meetings One buddy mentioned a t t e n d i n g the support group as a means of g e t t i n g support and s e e i n g the C l i e n t Care Case Manager at the same time. I n t e r e s t i n g l y enough, one of the C l i e n t Care Case Managers a l s o employs the support group as a means of "keeping i n touch with some of the buddies". As both C l i e n t Care Case Managers p o i n t out, the amount of c o n t a c t they would l i k e t o have and f e e l a b l e t o have are worlds a p a r t : 128 the d i f f e r e n c e between r e a l i t y and what we want to do i s l a r g e . What we want t o do i s to be i n touch about every other week v o l u n t e e r s are r e a l l y out i n the f i e l d and are doing i t w e l l or t h e y ' r e not and sometimes we don't even know i f i t ' s one or the o t h e r . . . u n t i l a problem comes along i f we have a reason t o c a l l the c l i e n t or the v o l u n t e e r . That has t o do with the s t a f f i n g l e v e l s , the number of v o l u n t e e r s , a l l of the other demands t h a t are put on us as s t a f f people I t seems then t h a t although c u r r e n t network a n a l y s i s r e s e a r c h has f a i l e d t o r e v e a l j u s t how i m p o r t a n t frequency of c o n t a c t i s as a r e l a t i o n s h i p v a r i a b l e , t h a t l e s s frequent c o n t a c t than d e s i r e d i s a r e a l concern f o r some of the v o l u n t e e r s and AIDS Vancouver s t a f f . But how o f t e n should C l i e n t Care Case Managers be i n touch with v o l u n t e e r s ? Can and should t h i s be s p e c i f i e d or i s t h e r e a need f o r f l e x i b i l i t y due t o i n d i v i d u a l v a r i a t i o n s among v o l u n t e e r s ? And should v o l u n t e e r s be expected as p a r t of t h e i r r e s p o n s i b i l i t i e s or weekly hours, t o commit t o r e g u l a r l y a t t e n d i n g the Buddy Support Group? I f so, how f r e q u e n t l y ? RECIPROCITY W h i l e f r e q u e n c y r e f e r s t o t h e number o f i n t e r a c t i o n s , r e c i p r o c i t y or d i r e c t e d n e s s i n t h i s chapter r e f e r s t o the amount of g i v e and take i n the i n i t i a t i o n of c o n t a c t s between v o l u n t e e r s and the agency, t h a t i s , whether one or b o t h p a r t i e s c o n s i s t e n t l y i n i t i a t e ( s ) c o n t a c t . The C l i e n t Care Case Managers see themselves as the i n i t i a t o r s of contact with v o l u n t e e r s i n terms o f : 129 (1) endeavouring t o encourage two way communication back and f o r t h ; (2) endeavouring t o s y s t e m a t i c a l l y check i n w i t h v o l u n t e e r s once t h e i r c l i e n t has d i e d ; and (3) endeavouring t o p r o v i d e the Buddy Support Group d e s p i t e a l l o f i t s problems. C l i e n t Care Case Managers as I n i t i a t o r s of Two-Way Communication Both C l i e n t Care Case Managers have mentioned the need f o r two way communication. They want t o be able t o c a l l on v o l u n t e e r s t o see how they are doing and to l e t them know t h a t they care, but they a l s o want v o l u n t e e r s t o c a l l them t o keep them u p - t o - d a t e w i t h what i s happening. The extent t o which t h i s occurs of course v a r i e s from one v o l u n t e e r - a g e n c y r e l a t i o n s h i p t o t h e next: I encourage and very much a p p r e c i a t e and t r y t o g i v e p o s i t i v e feedback when buddies do c a l l i n t o the o f f i c e . C e r t a i n l y any time a new assignment i s set up, t h a t i s something r e a l l y s t r e s s e d . But I f i n d i n many i n s t a n c e s t h a t they don't. The v o l u n t e e r s , I would say over the l a r g e p a r t don't c a l l i n very o f t e n or don't g i v e me [many] updates. I t ' s more a matter of f i n d i n g out what's going on on your own i n i t i a t i v e , and then c a l l i n g them. Sometimes when a problem comes up, yes, they w i l l c a l l i n t o say t h a t a c l i e n t has gone i n t o h o s p i t a l , but t h a t tends t o be...more of an e x c e p t i o n than the r u l e . I t r e a l l y v a r i e s w i t h t h e p a r t i c u l a r v o l u n t e e r . I t ' s p a r t l y a matter t h a t I t r y t o keep i n contact with the v o l u n t e e r s and they t r y to keep i n contact with me Some v o l u n t e e r s seem q u i t e content with the r e l a t i v e l y i n f r e q u e n t c o n t a c t with the agency, and t h i s v a r i a b l e and 130 sometimes u n f u l f i l l e d two way communication e x p e c t a t i o n : B a s i c a l l y they've j u s t given me c a r t e blanche, and I've j u s t gone and done my own t h i n g . And then i f th e r e has been some concern t h a t has come up at the o f f i c e , they've phoned and t a l k e d , and i f t h e r e ' s been some concern on my end I've phoned up and t a l k e d . B a s i c a l l y they j u s t k i n d of sat back and l e t me do my t h i n g and been s u p p o r t i v e at the Buddy Support meetings and checked on me t h a t I was doing okay...and t h e n t h e . . . [ C l i e n t Care Case Manager] w i l l phone me once i n awhile and j u s t ask me how t h i n g s are going from t h e r e [ a f t e r b e i n g assigned] you're k i n d of l e f t on your own and you're t o r e p o r t back t o the o f f i c e with what you found and what was decided, which I d i d , and kept i n con t a c t with [the C l i e n t Care Case Manager] i n i t i a l l y . . . a n d every once i n a while [the C l i e n t Care Case Manager] would touch base with me...I don't r e a l l y see the need t o phone the o f f i c e every week, or every two weeks because t h i n g s are always d i f f e r e n t anyway...If t h e r e ' s a problem, I ' l l phone, i f you don't hear from me, ev e r y t h i n g ' s okay while others do not: they [other v o l u n t e e r s ] hadn't been c o n t a c t e d f o r t h r e e months and t h e y j u s t t h o u g h t nobody was i n t e r e s t e d I f e e l t h e r e ' s nobody you can t a l k t o and t h e r e should be...one n i g h t . . . I s a i d t h a t I couldn't do t h i s [be a buddy due t o emotional s t r a i n ] again..,I f e e l they don't know what I'm doing or how I'm doing i t These d i s s a t i s f i e d v o l u n t e e r s p o t e n t i a l l y f e e l r e j e c t e d , i s o l a t e d and unappreciated. T h i s two way communication e x p e c t a t i o n , e s p e c i a l l y s i n c e i t i s not always f u l f i l l e d by v o l u n t e e r s and C l i e n t Care Case Managers a l i k e , r a i s e s some i m p o r t a n t q u e s t i o n s . Why are some v o l u n t e e r s not c a l l i n g i n t o the o f f i c e as was s t r e s s e d when t h e y were a s s i g n e d ? E s p e c i a l l y when they may be encountering problems? How 131 i s t h i s b e i n g addressed? I t would seem t h a t i n such cases, perhaps coupled with a C l i e n t Care Case Manager's f a i l u r e t o be i n touch, which has a l r e a d y been i d e n t i f i e d by one o f them as a r e a l i t y "sometimes", t h a t t h e consequences c o u l d be q u i t e damaging f o r a l l concerned. How much of the onus f o r i n i t i a t i n g c o n t a c t with the agency should be on the v o l u n t e e r ? Should i t be a two way s t r e e t , s u g g e s t i n g an e q u a l l y mutual r e s p o n s i b i l i t y ? Or should more of the r e s p o n s i b i l i t y l i e w i t h the agency which i n t u r n has to be accountable t o c l i e n t s as w e l l as f u n d e r s ? And, assuming t h a t more c o n t a c t , and more r e g u l a r c o n t a c t i n i t i a t e d b y the o r g a n i z a t i o n , as was mentioned e a r l i e r , i s d e s i r e d , what k i n d of people power i s r e q u i r e d and how can i t be secured? T h i s i s a very p e r t i n e n t query g i v e n the f a c t t h a t one C l i e n t Care Case Manager has i n d i c a t e d t h a t w i t h o t h e r j o b r e s p o n s i b i l i t i e s , only a r e a c t i v e r o l e i n d e a l i n g s w i t h v o l u n t e e r s has been p o s s i b l e . Are more s t a f f p o s i t i o n s needed? Do jobs need to be redesigned? Can any c o n t a c t s needing t o be made, or any r e s p o n s i b i l i t i e s dropped from r e d e s i g n e d j o b d e s c r i p t i o n s , be p i c k e d up by o t h e r , perhaps h i g h l y s k i l l e d v o l u n t e e r s i n the o r g a n i z a t i o n ? C l i e n t Care Case Managers as I n i t i a t o r s A f t e r C l i e n t s Have Died The second area i n which C l i e n t Care Case Managers see themselves i n an i n i t i a t i n g p o s i t i o n with regard t o 132 v o l u n t e e r s i s i n c o n t a c t i n g v o l u n t e e r s once t h e i r c l i e n t s have d i e d : I do make a p o i n t of g e t t i n g i n touch with people [buddies] t o acknowledge t h e i r r o l e and whatever sense of l o s s t h e y ' r e f e e l i n g around t h i s . For some v o l u n t e e r s I ask them how they are making s e p a r a t i o n f o l l o w i n g t h e d e a t h o f t h e i r c l i e n t . . . W e do encourage, a f t e r someone has d i e d t h a t they c o n s i d e r a leave of absence...before working with someone e l s e . I t ' s a l s o a matter of a s k i n g how they f e e l about t h i s and how much time they would l i k e t o take o f f , and what are t h e i r needs. I t h i n k only i n an i n s t a n c e where a v o l u n t e e r was p a r t i c u l a r l y keen and seemed l i k e they had a good support network f o r themselves and we were r e a l l y s h o r t of v o l u n t e e r s , we would look at s o r t of immediately a s s i g n i n g them again...whereas other people I would r e a l l y be much more i n c l i n e d and maybe even i n s i s t t h a t they take some time o f f . . . Although none of the v o l u n t e e r s i n t e r v i e w e d made any comments about t h e i r experiences of t h i s checking i n a f t e r the death of c l i e n t s they may have had i n the past, an Outside Agency A f f i l i a t e d Person mused, "I don't know how much of t h a t t h e r e i s , my sense of i t i s t h a t t h e r e ' s not much". How c o n s i s t e n t l y , assuming t h a t t h i s i n d i v i d u a l i s making a v a l i d p o i n t , does t h i s f o l l o w up a f t e r a death a c t u a l l y occur? And how i s i t done? Over the phone? In person i n the o f f i c e ? How should i t be done? The answers t o some of these questions no doubt a f f e c t how w e l l C l i e n t Care Case Managers are able t o assess who can and cannot handle b e i n g a s s i g n e d again immediately or i n the f u t u r e . Should some v o l u n t e e r s be as s i g n e d r i g h t a f t e r completing an assignment? Or should a leave of 133 absence be mandatory? In s i t u a t i o n s where a c l i e n t r e a l l y needs a buddy and the only v o l u n t e e r s to choose from are people very newly without a c l i e n t , i t seems t h a t c h o i c e s are being made between two f a r from i d e a l o p t i o n s : a s s i g n i n g a v o l u n t e e r t h a t i s p o t e n t i a l l y "burnt out" and who c o u l d do some emotional damage t o themselves or the PWA, or not a s s i g n i n g anyone u n t i l someone becomes a v a i l a b l e , p o t e n t i a l l y l e a v i n g t h e PWA w i t h o u t any support. C l i e n t Care Case Managers as I n i t i a t o r s With Regard t o the Buddy Support Group The t h i r d a r e a i n which t h e Case Managers see themselves as r e a c h i n g out to buddy/home care v o l u n t e e r s i s i n the p r o v i s i o n of a group f o r support - the Buddy Support Group. Although the agency has indeed p e r s e v e r e d i n i t s commitment t o the p r o v i s i o n of the group, intended t o be "a s a f e p l a c e where the v o l u n t e e r s can t a l k about t h e i r own emotions and f e e l i n g s and experiences, around the work th e y ' r e doing", the group has been r i d d l e d with a whole gamut of s t r u c t u r a l problems: That group has gone t h r o u g h a l l k i n d s o f i n c a r n a t i o n s . We've had d i f f e r e n t . . f a c i l i t a t o r s ... f o r m a t s o f i n - s e r v i c e s p r o v i d e d f o r p e o p l e , ... e v e n i n g s , o r whatever and i t ' s worked with v a r y i n g degrees of success, or l a c k of enthusiasm on the p a r t of the v o l u n t e e r s . . .we have i n c r e a s e d the meetings to having one a week a l t e r n a t i n g between Mondays and T h u r s d a y s , two d i f f e r e n t n i g h t s and request t h a t they go t o at l e a s t one a month...the f a c i l i t a t o r g e t t i n g i n t o the wrong meeting so t h e r e wasn't a f a c i l i t a t o r when the...buddies a r r i v e d , the f a c t t h a t t h e r e hasn't 134 been a c o n s i s t e n t f a c i l i t a t o r , . . . t h e r e hasn't been a c o n s i s t e n t space c r e a t e d D e s p i t e the e f f o r t s t o improve the group over the l a s t year, one of the C l i e n t Care Case Managers maintains, "I don't t h i n k we've made a l o t of progress with a c t u a l l y g e t t i n g people out and i n v o l v e d " . Given the immense d i f f i c u l t y i n keeping the group r u n n i n g and g e t t i n g v o l u n t e e r s t o a t t e n d , i t seems reasonable to ask whether a support group i s i n f a c t the best way t o p r o v i d e v o l u n t e e r s with the support they need i n t h i s o r g a n i z a t i o n . I f so, how should i t be organized? When? Where? How Often? Should i t be compulsory? Who s h o u l d t h e f a c i l i t a t o r be? S h o u l d C l i e n t Care Case Managers p l a y a f a c i l i t a t i v e r o l e i n the group as has been the case i n the past? Why or why not? What should be the q u a l i f i c a t i o n s of such a f a c i l i t a t o r ? How l a r g e should the group be? What should i t s purpose be - f o r esteem support, i n f o r m a t i o n a l support, or both? T h i s whole i s s u e of the p r o v i s i o n of support f o r v o l u n t e e r s i s very complex indeed and q u e s t i o n s and f u r t h e r concerns about i t w i l l be r a i s e d i n the d i s c u s s i o n of esteem support. To summarize, although the C l i e n t Care Case Managers see t h e m s e l v e s as e n c o u r a g i n g two way, mutual communication between t h e m s e l v e s and v o l u n t e e r s , as checking i n when v o l u n t e e r s ' c l i e n t s d i e , and as b e i n g committed t o the p r o v i s i o n of the Buddy Support Group, 135 some quest i o n s have been r a i s e d about the equal i n t e r -communication i d e a l : about how w e l l i t works and whether i t i s a p p r o p r i a t e ; about e x a c t l y how the f o l l o w up a f t e r a c l i e n t ' s death occurs, and should occur; and about how and what kinds of support should be p r o v i d e d by the Buddy Support Group, should i t be deemed an e s s e n t i a l means of p r o v i d i n g support. ESTEEM/EMOTIONAL SUPPORT As was the case f o r the network c h a r a c t e r i s t i c s of f r e q u e n c y and r e c i p r o c i t y , d a t a on t h e p r o v i s i o n o f esteem or e m o t i o n a l s u p p o r t a l s o c e n t r e a r o u n d t h e mechanisms o f t h e v o l u n t e e r - C l i e n t Care Case Manager r e l a t i o n s h i p and the Buddy Support Group. Esteem/Emotional Support P r o v i d e d By C l i e n t Care Case Managers V o l u n t e e r s have experienced t h e i r r e l a t i o n s h i p s with the C l i e n t Care Case Managers as b e i n g both e m o t i o n a l l y s u p p o r t i v e and l e s s s u p p o r t i v e . E m o t i o n a l l y s u p p o r t i v e f u n c t i o n s t h a t v o l u n t e e r s are a p p r e c i a t i v e of i n c l u d e : j u s t knowing t h e r e i s someone they can t a l k t o , b e i n g a s k e d how t h e y a r e d o i n g , b e i n g l e g i t i m i z e d and a p p r e c i a t e d , and b e i n g e n c o u r a g e d t o l o o k a f t e r themselves: There's always someone t h e r e who's going t o t a l k t o you about what you're going through 136 [they] ask me how t h i n g s are going. How are you coping with the s i t u a t i o n ? Is t h e r e anything t h a t you need t o t a l k about or i s t h e r e any way t h a t we can h e l p t o make i t more p r o d u c t i v e ? We [buddy and C l i e n t Care Case Manager] can t a l k about anything. They are very good at l e t t i n g you know t h a t whatever your concern i s , i t ' s important and t h e y ' l l l i s t e n t o any concerns or ideas or t i p s , h e l p f u l h i n t s . . . t h e y ' r e so easy t o get along with t h e y [ p e o p l e i n t h e o r g a n i z a t i o n ] a r e r e a l l y g r e a t . . . a t reminding you t h a t you need t o take care of y o u r s e l f too and t h a t ' s why they have the Buddy Support Group meetings and the people who work t h e r e are very good at p e r s o n a l l y t e l l i n g people how much they are a p p r e c i a t e d Things t h a t f e e l l e s s e m o t i o n a l l y s u p p o r t i v e t o some v o l u n t e e r s , some o f which c o u l d p r o b a b l y be e a s i l y r e c t i f i e d , i n c l u d e f e e l i n g apprehensive t h a t they are b e i n g checked up on, and f e e l i n g t h a t the C l i e n t Care Case Manager i s i n a c c e s s i b l e or u n a v a i l a b l e : Another weakness I see i s t h a t of o f f i c e - v o l u n t e e r communication because d e s p i t e the encouragement t o c a l l i n , I t h i n k sometimes v o l u n t e e r s a r e d i s c o u r a g e d t o do t h a t i f they f e e l t h a t maybe i t ' s a r e p o r t c a r d k i n d of t h i n g , or i f they c a l l i n and I'm not a v a i l a b l e d e s p i t e the f a c t t h a t I say, i f you leave your name and number I ' l l get back t o you. I t ' s p r e t t y busy around t h i s o f f i c e sometimes and sometimes v o l u n t e e r s have dropped i n and asked f o r me t o see them or i f they c a l l i n I'm i n a meeting or at the h o s p i t a l or they can't reach me. I t h i n k t h a t discourages them One of the v o l u n t e e r ' s comments confirms the C l i e n t Care Case Manager's c o n c e r n about v o l u n t e e r s ' a p p r e h e n s i o n r e g a r d i n g b e i n g "checked up on": You k i n d of get t h i s f e e l i n g t h e y ' r e checking up on you and I'm d o i n g s o m e t h i n g wrong and I've overstepped my bounds and t o l d [PWA] something I shouldn't have and I've done something I shouldn't have or who knows? You do, you wonder 137 Why i s i t t h a t v o l u n t e e r s are f e e l i n g "checked up on"? Is i t because contact with the agency, i n i t i a t e d by the agency i s i n f r e q u e n t enough t h a t when i t i s i n i t i a t e d i t i s too much the unexpected, too much of a s u r p r i s e ? Do v o l u n t e e r s having r e l a t i v e l y i n f r e q u e n t c o n t a c t with the agency operate a c c o r d i n g t o t h a t o l d maxim t h a t no news i s good news, meaning t h a t being c o n t a c t e d i s cause f o r alarm? Or i s the di s c o m f o r t more a s s o c i a t e d with not knowing what the agency expects i n terms of conduct, c a u s i n g v o l u n t e e r s t o expect the axe t o f a l l i n e v i t a b l y at some p o i n t ? I f t h e s e p o s t u l a t i o n s have some v a l i d i t y , c o u l d v o l u n t e e r s ' apprehensions be a l l e v i a t e d by s c h e d u l i n g i n advance, with each v o l u n t e e r , r e g u l a r times t o get i n touch and/or c l a r i f y i n g i f necessary, f o r the v o l u n t e e r s , e x a c t l y what i s expected, and what w i l l not be t o l e r a t e d ? And why are some v o l u n t e e r s f e e l i n g t h a t the C l i e n t Care Case Managers are not e a s i l y a c c e s s i b l e t o them? Is i t because these s t a f f members are busy doing other t h i n g s t h a t have been scheduled i n advance and/or are a l r e a d y i n progress? Is i t p a r t l y due t o the extremely busy and sm a l l q u a r t e r s t h a t the o r g a n i z a t i o n has been crowded i n t o s i n c e i t s i n c e p t i o n ? Do v o l u n t e e r s f e e l t h a t C l i e n t Care Case Managers are a b i t more a c c e s s i b l e now t h a t the agency has r e l o c a t e d i n a l a r g e r o f f i c e where i t i s much c l e a r e r what t o do, and who t o speak t o once i n s i d e the door? 138 Once the b a t t l e of r e a c h i n g the C l i e n t Care Case Managers has been s u c c e s s f u l l y fought, a c c e s s i b i l i t y of another s o r t became a b a t t l e f o r another v o l u n t e e r ; the C l i e n t Care Case Manager was a p p a r e n t l y not as a v a i l a b l e t o t a l k w i t h t h e v o l u n t e e r about p e r s o n a l p r o b l e m s a f f e c t i n g her work with her c l i e n t , as would have been the case had she needed t o t a l k i n s t e a d about her c l i e n t . She seems t o f l u c t u a t e between t h i n k i n g she should and then should not have an e x p e c t a t i o n of t h i s k i n d of emotional support from the C l i e n t Care Case Manager: when i t comes down t o your f r i e n d , they [ C l i e n t Care Case Managers] have to go, they've got something more p r e s s i n g . . .when i t comes down t o t h a t k i n d of p e r s o n a l l e v e l , t h e y're not t h e r e as much as they a r e f o r you when i t ' s t h e s t r a n g e r t h a t y o u ' r e buddying as opposed t o a f r i e n d with AIDS...They are b e i n g p a i d t o do the other t h i n g so i t i s d o l l a r s and cents and they only have so much time i n a day. But when I phoned l a s t , i t was my f r i e n d I wanted t o t a l k about.. .that's what was making i t hard f o r me t o d e a l with my buddies... I can't expect them t o have the time f o r t h a t e i t h e r Although i t can never be e a s i l y known what the f a c t o r s were t h a t were o p e r a t i n g f o r the C l i e n t Care Case Manager on the day t h i s v o l u n t e e r experienced the C l i e n t Care Case Manager's u n a v a i l a b i l i t y , i t draws a t t e n t i o n to an important i s s u e : should these s t a f f members be a v a i l a b l e t o be e m o t i o n a l l y s u p p o r t i v e t o v o l u n t e e r s as t h e y endeavour t o d e a l with t h e i r p e r s o n a l problems? I t seems reasonable t h a t t h i s would be the case, e s p e c i a l l y i n circumstances i n which the p e r s o n a l problem a f f e c t s the v o l u n t e e r ' s a b i l i t y t o f u l f i l l h i s / h e r v o l u n t a r y 139 r e s p o n s i b i l i t i e s , but what, i f any p r o b l e m s , do not somehow i n f l u e n c e a l l aspects of a l i f e ? Adding t o the other a c c e s s i b i l i t y r e l a t e d i s s u e s , an O u t s i d e Agency A f f i l i a t e d P e r s o n has p r e s e n t e d t h e p e r c e p t i o n t h a t some v o l u n t e e r s f e e l t h a t they are a bother t o the agency, i n the way: they [volunteers] p e r c e i v e themselves as b o t h e r i n g t h e agency, and so i t [an i s s u e o f i m p o r t a n c e ] doesn't get attended t o u n t i l i t ' s r e a l l y out of c o n t r o l How c o u l d t h i s p e r c e p t i o n be a l t e r e d ? What a c t i o n s c o u l d be t a k e n t o e n s u r e t h a t v o l u n t e e r s f e e l as f r e e as p o s s i b l e t o b r i n g up any worries or concerns, how ever l a r g e or sma l l , as a means of e n a b l i n g C l i e n t Care Case Managers t o be as p r o a c t i v e as opposed t o r e a c t i v e as p o s s i b l e i n t h e i r d e a l i n g s with v o l u n t e e r s ? R e g u l a r l y scheduled meetings as suggested e a r l i e r ? To encapsulate, i t appears t h a t some v o l u n t e e r s f e e l supported by the C l i e n t Care Case Managers they i n t e r a c t with, because these s t a f f members ask how t h i n g s are going, l e t v o l u n t e e r s know they are a p p r e c i a t e d , and encourage v o l u n t e e r s t o l o o k a f t e r t h e m s e l v e s e m o t i o n a l l y . W h i l e some f e e l t h a t C l i e n t Care Case Managers are a c c e s s i b l e and a v a i l a b l e t o , and s u p p o r t i v e of them though, others do not. Esteem/Emotional Support P r o v i d e d By the Buddy Support Group In a d d i t i o n t o r e c o g n i z i n g the esteem s u p p o r t i v e 140 f u n c t i o n s t a k i n g p l a c e i n t h e i r r e l a t i o n s h i p s w i t h C l i e n t Care Case Managers, v o l u n t e e r s a l s o r e c o g n i z e the e m o t i o n a l l y s u p p o r t i v e f u n c t i o n o f t h e Buddy Su p p o r t Group. Although d i f f e r e n t v o l u n t e e r s have mentioned t h a t the support group has the p o t e n t i a l t o be e m o t i o n a l l y s u p p o r t i v e , most s t a t e t h a t they are g l a d t h a t others seem t o be b e n e f i t i n g from a t t e n d i n g because they have not t h e m s e l v e s r e a p e d any such b e n e f i t s . Only one v o l u n t e e r e x p l i c i t l y s t a t e s t h a t b e i n g a t t h e Buddy Support Group has been a p o s i t i v e experience p e r s o n a l l y : at those meetings you have your o p p o r t u n i t y t o a i r any concerns and ask f o r any he l p from [ C l i e n t Care Case Managers] or from anyone e l s e , any of the other buddies, any t i p s or a n y t h i n g . . . I t r e a l l y buoys you up; you r e a l l y f e e l t h a t you're capable of a l o t more when you come away from some of those meetings Many v o l u n t e e r s have i d e n t i f i e d a number of the problems they have experienced as members of the group, t h a t make i t d i f f i c u l t t o r e c e i v e emotional support. More than one v o l u n t e e r has experienced the group as be i n g s u p e r f i c i a l : when t h e y t a l k e d i t was v e r y s u p e r f i c i a l and I d i d n ' t get the f e e l i n g f o r myself t h a t t h e r e was a l o t of s a f e t y t h e r e . . . i t may have changed because I haven't been t h e r e f o r a long time Someone has a l s o m e n t i o n e d t h a t i t i s d i f f i c u l t t o determine what i s being s a i d - e i t h e r because n o t h i n g much i s be i n g s a i d , or because names are not used as h a n d l e s t o t a l k about p e o p l e - which c o u l d a l s o be constr u e d as seeming s u p e r f i c i a l and l a c k i n g i n t r u s t : 141 a couple of people that I thought had r e a l problems that they wanted some help with, I didn't think they got any r e a l help. I think they put t h e i r problem out and what they wanted was something concrete and what they got was a l o t of fancy words... I never went back again because I thought... i f you can't even t r u s t the group enough to say names and you always have to t a l k about f i c t i o n , then you're not i n a group you can t r u s t because they want to maintain c o n f i d e n t i a l i t y you don't use any names...so they would c a l l my buddy, and I never knew who the buddy was, whether the buddy was them, or the person who had AIDS and I'm sure half of the people there didn't know what they were t a l k i n g about...I just got the impression they were j u s t t a l k i n g , and maybe i t d i d them some good...To me i t just seemed as i f nothing concrete was talked about No doubt the group would a l s o seem s u p e r f i c i a l to individuals who apparently must attend, but remain s i l e n t because they are not currently assigned to a PWA: But unless you had somebody assigned you weren't allowed to t a l k about your concern. And [this one p a r t i c u l a r buddy] i s an ad hoc support to two other people i n the community...has not been assigned to them but...c o u l d never d i s c u s s how...was f e e l i n g about what was going on with them because they hadn't been o f f i c i a l l y assigned. So not only were you t o l d you had to go, but when you got there you were t o l d you had to keep your mouth shut Another "rule" a volunteer has experienced has to do with not being permitted to t a l k about certain issues, as well as not being permitted to t a l k or to refer to people by name for the sake of c o n f i d e n t i a l i t y : when I f i r s t went they said that we had made an agreement not to mention names...this l i s t of rules...and one of them was [McLaren House]... afte r that [laying out the rules] everybody just s i t s and looks at each other...so s t r a i g h t away I [as a volunteer associated with McLaren House] never spoke but I sat and l i s t e n e d Perhaps even more problematic than having to attend, yet 142 having to remain s i l e n t and/or be extremely c a r e f u l about what to t a l k about, i s other v o l u n t e e r s ' experiences of b e i n g t o l d i n a d d i t i o n , t h a t they are not e n t i t l e d t o r e c e i v e emotional support at the Buddy Support Group meetings: some v o l u n t e e r s are t o l d t h e y ' r e not e n t i t l e d t o support as a matter of f a c t , because they got t i r e d of w a i t i n g to be a s s i g n e d so they went d i r e c t l y t o [St. Paul's H o s p i t a l ] . They were a s s i g n e d by the s o c i a l worker t h e r e . They were t o l d they were no longer e n t i t l e d t o support from the agency. They c o u l d a t t e n d meetings, but they couldn't t a l k . They c o u l d l i s t e n t o other people get support, but they weren't allowed to t a l k The many and v a r i e d d i f f i c u l t i e s a s s o c i a t e d with the group are w e l l worth examining because t h e r e i n may l i e some s o l u t i o n s . To i l l u s t r a t e : how c o u l d the sense of s u p e r f i c i a l i t y a s s o c i a t e d w i t h t h e group be a l l e v i a t e d ? Would implementing a more f l e x i b l e and workable set of r u l e s r e g a r d i n g c o n f i d e n t i a l i t y - t h a t p e r m i t s t h e use o f names, f o r example - as w e l l as a system of "rounds" whereby everyone i n attendance gets an o p p o r t u n i t y t o t a l k about t h e i r concerns, improve the depth and a l e v e l of t r u s t i n the group? I t seems t h a t the agency or the f a c i l i t a t o r s , or whoever i s u l t i m a t e l y r e s p o n s i b l e has t o be t r u s t i n g i n order f o r t r u s t t o develop among group members. Other p e r t i n e n t q u e s t i o n s r e l a t e d t o t h e g roup's p r o b l e m s come up t o o . Why do u n a s s i g n e d v o l u n t e e r s have t o a t t e n d the support group? While of 143 p o t e n t i a l b e n e f i t t o c u r r e n t l y a s s i g n e d v o l u n t e e r s , i s t h i s enough j u s t i f i c a t i o n t o make unassigned v o l u n t e e r s ' a t t e n d a n c e c o m p u l s o r y ? What i s t h e i n c e n t i v e f o r unassigned v o l u n t e e r s t o a t t e n d when they may have very l i t t l e t o c o n t r i b u t e t o the d i s c u s s i o n because they are not assigned, and are not p e r m i t t e d t o speak anyhow? I t seems t h a t t h e r e i s no p o i n t t o them b e i n g t h e r e i f they cannot speak. Any b e n e f i t i n t h e i r presence i s l o s t . With regard t o e n t i t l e m e n t , under what circumstances are v o l u n t e e r s not e n t i t l e d t o support? Should t h e r e be such circumstances? I f so, i t seems only f a i r t o make them known t o v o l u n t e e r s at the outset so they are aware of what they are g e t t i n g i n v o l v e d i n . I t i s important t h a t i s s u e s between s t a f f at two separate agencies as i n t h i s c a s e g e t a d d r e s s e d i n t h a t a r e n a so t h a t i n n o c e n t v o l u n t e e r s do not become pawns dragged i n t o the middle of something t h a t does not r i g h t f u l l y concern them. A l t h o u g h numerous w e l l - i n t e n t i o n e d a t t e m p t s have been made p r i o r t o t h i s study t o improve the Buddy Support Group, t h i s i n i t s e l f i r o n i c a l l y enough became a problem f o r at l e a s t one v o l u n t e e r : I don't know i f the f a c i l i t a t o r s haven't had a l o t of e xperience i n group dynamics, or whether they j u s t aren't p u t t i n g i t i n t o p r a c t i c e , . . . i t seems as i f t h e y a r e f l o u n d e r i n g a l i t t l e b i t , f i s h i n g around, should we t r y t h i s , should we t r y t h a t , or maybe we should c a n c e l t h i s group and s t a r t a...new group or how are we going t o do i t so t h a t we don't hurt anybody's f e e l i n g s . . . t h e buddies don't need t o go through t h i s . . . t h e y have enough...they're going t h r o u g h t h e m s e l v e s . I t would be b e t t e r i f t h e o f f i c e would j u s t g e t [ i t s ] a c t t o g e t h e r and 144 organize [ t h i n g s ] . . . i t was exhausting because we had t h i n g s we wanted to t a l k about. We d i d n ' t want to t a l k about how we wanted t h i s group t o run S h o u l d v o l u n t e e r s have been i n v o l v e d i n h e l p i n g t o improve, t o s o l v e t h e p roblems i n t h e Buddy Support Group? Or should they have had a c h o i c e about whether or not they wanted to be i n v o l v e d ? D i d they have a choice? Some i n d i v i d u a l s l i k e the v o l u n t e e r j u s t quoted found i t too s t r e s s f u l , while others may have been angry had they been passed over, t h e i r i n put u n s o l i c i t e d . In summary, of a l l of the i s s u e s r a i s e d r e g a r d i n g e m o t i o n a l s u p p o r t f o r v o l u n t e e r s , t h e r e i s one t h a t stands out t h a t must be addressed. And t h a t i s : i f v o l u n t e e r s a r e h a v i n g d i f f i c u l t y f e e l i n g e m o t i o n a l l y supported i n p a r t by t h e i r C l i e n t Care Case Managers, and almost completely by the Buddy Support Group, what i s the best way i n which to p r o v i d e emotional support? Should more energy be i n v e s t e d i n improving one or both of these i n t e n d e d s u p p o r t mechanisms, and/or s h o u l d o t h e r a l t e r n a t i v e s be sought? INFORMATIONAL SUPPORT Although the Buddy Support Group i s seen by some as one source of i n f o r m a t i o n a l support, most i n f o r m a t i o n a l support p o t e n t i a l l y comes to v o l u n t e e r s from the core and i n - s e r v i c e v o l u n t e e r t r a i n i n g , t h r o u g h t h e i r r e l a t i o n s h i p s with C l i e n t Care Case Managers, and through r e c e i v i n g the monthly v o l u n t e e r n e w s l e t t e r . 145 I n f o r m a t i o n a l Support P r o v i d e d By the V o l u n t e e r T r a i n i n g The t r a i n i n g i s almost unanimously h a i l e d as b eing e x c e l l e n t , o f v e r y h i g h q u a l i t y , by v o l u n t e e r s and Outside Agency A f f i l i a t e d Persons a l i k e . One v o l u n t e e r s t a t e s t h a t i t prepared her w e l l f o r f u l f i l l i n g her r o l e as a buddy b e c a u s e i t s e n s i t i z e d h e r t h r o u g h t h e u t i l i z a t i o n of e x p e r i e n t i a l e x e r c i s e s , t o what i t might be l i k e t o have t o d e a l with e v e r - d e c r e a s i n g c a p a b i l i t y : Yeah, t h e r e ' s a l o t of s t u f f [more to b e i n g a buddy t h a n meets t h e e y e ] . But y o u ' r e p r e p a r e d r e a l l y . . .well by the t r a i n i n g . . .We had a l o t of hands on s t u f f . . . [ t h e r e were many e x p e r i e n t i a l e x e r c i s e s ] so t h a t you'd understand what people are going through when th e y ' r e i n c a p a c i t a t e d and they can't f e e d themselves and you have t o f e e d them and can't t e l l you what they want or how f a s t . . . O r they don't have the energy...What i t ' s l i k e f o r somebody who i s so f r u s t r a t e d because t h e r e ' s s t u f f they've always been able t o do they can't do now and t h e y ' r e r e l y i n g on somebody e l s e t o do i t f o r them Some gaps i n the core t r a i n i n g t h a t c o u l d be looked i n t o though, a r e as f o l l o w s . One PWA has s t r e s s e d t h e importance of v o l u n t e e r s becoming aware of t h e i r own needs v i a the t r a i n i n g : they should be more c a r e f u l when th e y ' r e t r a i n i n g about p e o p l e b e i n g aware o f t h e i r own needs ... and... t e l l i n g p e o p l e t o be c a r e f u l about b e i n g p a t r o n i z i n g V o l u n t e e r s have c a l l e d f o r more data i n the t r a i n i n g on the death process and what death means i n the key world r e l i g i o n s , as w e l l as f o r a more balanced p i c t u r e of what the v o l u n t e e r - c l i e n t r e l a t i o n s h i p might be l i k e : 146 I j u s t t h i n k t h e r e should be more about an aspect of a r e l a t i o n s h i p t h a t ' s not so glowing and wonderful and s p i r i t u a l t o help you prepare f o r a r e l a t i o n s h i p such as the one I have with [PWA], t h a t you don't f e e l t h a t you've done something wrong here because t h i s i s n ' t the k i n d of warm and l o v i n g r e l a t i o n s h i p t h a t everyone e l s e i s t a l k i n g about And an Outside Agency A f f i l i a t e d Person says the t r a i n i n g s h o u l d a s s i s t v o l u n t e e r s i n d e v e l o p i n g more s e l f -p r e s e r v a t i o n s k i l l s : a l o t of the buddy t r a i n i n g i s about... opening your h e a r t , t h e c l o s e n e s s , t h e s u p p o r t , a l o t o f us c a r e g i v e r type people are a l r e a d y p r e t t y good at t h a t . What we're not as good at, i s t a k i n g care of o u r s e l v e s . Having the s k i l l s t o keep a l e v e l of o b j e c t i v i t y , so maybe th e r e needs t o be more, I don't even remember th e r e being any of t h a t i n the buddy t r a i n i n g Are these i s s u e s addressed i n the core t r a i n i n g , and j u s t not r e c a l l e d ? I f so, do they need t o be p r e s e n t e d d i f f e r e n t l y ? I f not, do they need to be i n c l u d e d ? One of the C l i e n t Care Case Managers has mentioned t h a t t h e r e was one o c c a s i o n on which buddy/home care v o l u n t e e r s o n l y r e c e i v e d the core t r a i n i n g , and not the f o l l o w up buddy s p e c i f i c i n - s e r v i c e . Are both types of t r a i n i n g s needed? What i s , and what s h o u l d be i n c l u d e d i n t h e buddy s p e c i f i c i n - s e r v i c e ( s ) ? Is t h i s the p l a c e t o address some of the gaps t h a t have been i d e n t i f i e d ? I n f o r m a t i o n a l Support P r o v i d e d By C l i e n t Care Case Managers Once v o l u n t e e r s complete the core t r a i n i n g , t h e i r next sources of i n f o r m a t i o n a l support are the C l i e n t Care Case Managers: 147 I can remember when [the C l i e n t Care Case Manager] gave me [PWA's name] and phone number and I phoned [PWA] and I went t o ...door, I had no i d e a what t o expect. Perhaps t h a t was f i n e not t o have any background, I j u s t d i d n ' t know what I was g e t t i n g i n t o , but I t h i n k a f t e r t h a t someone should have phoned and s a i d , now how are t h i n g s going, j u s t some k i n d of back up Is i t us u a l f o r v o l u n t e e r s t o be given l i t t l e or no i n f o r m a t i o n about t h e PWA t o whom t h e y a r e , or p o t e n t i a l l y are be i n g assigned? Is t h i s how i t should be? What k i n d o f i n f o r m a t i o n , and how much s h o u l d v o l u n t e e r s be giv e n about the c l i e n t they are, or may be t a k i n g on? Assuming t h a t most i n i t i a l c o n t a c t s between v o l u n t e e r s and c l i e n t s occur i n the manner d e s c r i b e d above, i s t h i s the best way? How and where should the i n i t i a l meeting take p l a c e ? And l e s s germane t o t h i s p a r t i c u l a r d i s c u s s i o n , b u t o f g r a v e i m p o r t a n c e more g e n e r a l l y , what and how much, i f anything are PWAs t o l d by the C l i e n t Care Case Manager p r i o r t o t h e i r f i r s t encounters with v o l u n t e e r s ? And what k i n d of i n f o r m a t i o n do C l i e n t Care Case Managers s o l i c i t from v o l u n t e e r s about themselves, and what and how much of i t i s u t i l i z e d by the C l i e n t Care Case Manager t o make the v o l u n t e e r -c l i e n t match? Matches have been o f v a r y i n g s u c c e s s , ranging on a continuum from poor t o g r e a t . What are the f a c t o r s t h a t account f o r these d i f f e r e n c e s ? Are they extraneous u n c o n t r o l l a b l e s ? Or are they a f u n c t i o n of the method u t i l i z e d f o r matching v o l u n t e e r s and c l i e n t s ? I n f o r m a t i o n a l support, i n sum, i s w e l l p r o v i d e d with 148 minor a l t e r a t i o n s suggested, f o r the core t r a i n i n g , while a number of q u e s t i o n s have been r a i s e d r e g a r d i n g the amount and e f f e c t i v e n e s s of i n f o r m a t i o n a l s u p p o r t p r o v i d e d f o r v o l u n t e e r s and c l i e n t s , and c o l l e c t e d about v o l u n t e e r s and c l i e n t s , by C l i e n t Care Case Managers. CONTENT Content as i t may be r e c a l l e d , has t o do with the number of meanings or r o l e s - f r i e n d , f a m i l y member, p a r t n e r , n e i g h b o u r , co-worker, e t c . - i n d i v i d u a l s i n r e l a t i o n s h i p s t o g e t h e r a t t a c h t o , or p l a y i n t h o s e r e l a t i o n s h i p s . Current r e s e a r c h r e s u l t s are c o n f l i c t i n g ( I s r a e l , 1982) as t o the comparative b e n e f i t of m u l t i -versus u n i p l e x r e l a t i o n s h i p s ; i n f a c t , i t i s not c l e a r what r o l e i f any, the network c h a r a c t e r i s t i c of content p l a y s at a l l . In the l a s t chapter i t was p o i n t e d out t h a t r e l a t i o n s h i p s c o n s t i t u t i n g t h e v o l u n t e e r - c l i e n t subsystem are m u l t i p l e x , t h a t i s , being composed of two or more d i f f e r e n t r e l a t i o n s h i p dynamics, and t h a t i n some c i r c u m s t a n c e s a t l e a s t , m u l t i p l e x i t y i s p r o b l e m a t i c . T h i s chapter which has focused on v a r i o u s q u a l i t i e s of t h e v o l u n t e e r - a g e n c y s ubsystem would not be complete without i n c l u d i n g a d i s c u s s i o n of content r e l a t e d i s s u e s . A l t h o u g h not i d e n t i f i e d as b e i n g p r o b l e m a t i c by v o l u n t e e r s or C l i e n t Care Case Managers, t h r e e d i f f i c u l t i e s r e l a t e d t o content i n the volunteer-agency s u bsystem have been i d e n t i f i e d by O u t s i d e Agency 149 A f f i l i a t e d P e r s o n s . The t h r e e i s s u e s a r e : (1) t h a t v o l u n t e e r s can sometimes have two or more r o l e s i n the o r g a n i z a t i o n - they can be home care v o l u n t e e r s as w e l l as buddies, f o r example - which can be very h e l p f u l as w e l l as very d e t r i m e n t a l , f o r a v a r i e t y of reasons; (2) t h a t t h e r e does not seem to be agreement, or at l e a s t i t i s not c l e a r , who i s r e s p o n s i b l e f o r v o l u n t e e r s once they have been t r a i n e d and a s s i g n e d a job w i t h i n t h e Buddy/Home Care Program, the C l i e n t Care Case Managers or the V o l u n t e e r C o o r d i n a t o r ; i n other words under what circumstances are the C l i e n t Care Case Managers j u s t C l i e n t Care Case Managers and under what circumstances do they p l a y a s u p e r v i s o r y r o l e as w e l l , or c o n v e r s e l y , under what circumstances i s the V o l u n t e e r C o o r d i n a t o r j u s t the V o l u n t e e r C o o r d i n a t o r without any s u p e r v i s o r y r e s p o n s i b i l i t y f o r a p a r t i c u l a r v o l u n t e e r ? : t h i s whole t h i n g r e a l l y i l l u s t r a t e s the k i n d of muck-ups t h a t can happen because t h i s person was a buddy but...wasn't b e i n g u sed as a buddy because...wasn't a p p r o p r i a t e , so t h e r e f o r e [the V o l u n t e e r C o o r d i n a t o r ] was u s i n g . . . a s a r e g u l a r v o l u n t e e r , s o . . . g o t a s s i g n e d as a c l e a n i n g v o l u n t e e r , and t h e n . . . c a l l s up [the C l i e n t Care Case Manager], not [the V o l u n t e e r Coordinator] and s a i d I want to be a buddy, then [the C l i e n t Care Case Manager] re-assigned...without t e l l i n g [Volunteer C o o r d i n a t o r ] , and so t h e r e ' s something not c l e a r t h e r e about who's r e s p o n s i b l e f o r what p a r t s of the v o l u n t e e r program In t h i s s i t u a t i o n , f o r whatever reason the C l i e n t Care Case Manager and the V o l u n t e e r C o o r d i n a t o r d i d not share a common understanding of t h i s v o l u n t e e r ' s r o l e ( s ) . The 150 C l i e n t Care Case Manager saw the v o l u n t e e r as both a buddy and a home care v o l u n t e e r , while the V o l u n t e e r C o o r d i n a t o r saw t h e v o l u n t e e r o n l y as a home c a r e v o l u n t e e r even though t h i s v o l u n t e e r had o r i g i n a l l y been t r a i n e d and r e c o g n i z e d as a buddy. Had the C l i e n t Care Case Manager and the V o l u n t e e r C o o r d i n a t o r communicated about t h i s s i t u a t i o n , the v o l u n t e e r might not have been r e - a s s i g n e d i n a p p r o p r i a t e l y as a buddy. And, t o do with t h e a s s i g n i n g o f v o l u n t e e r s , who s h o u l d have been r e s p o n s i b l e f o r a l l o w i n g t h e c l e a n i n g v o l u n t e e r t o withdraw from the c l e a n i n g p o s i t i o n , the C l i e n t Care Case Manager or the V o l u n t e e r C o o r d i n a t o r , or both, and who should have been r e s p o n s i b l e f o r d e c i d i n g t o or not t o r e - a s s i g n the v o l u n t e e r as a buddy, the C l i e n t Care Case Manager, t h e V o l u n t e e r C o o r d i n a t o r , o r bo t h ? The d i f f i c u l t y with t h i s c o n f u s i o n i s t h a t the two s t a f f do not seem t o know how t o r e l a t e t o one another, the v o l u n t e e r does not know who s h o u l d be c o n t a c t e d f o r d i f f e r e n t i s s u e s , and Outside Agency A f f i l i a t e d People who are a f f e c t e d do not know which s t a f f member they should be speaking with e i t h e r . T h i s makes s u p e r v i s i n g and s u p p o r t i n g v o l u n t e e r s adequately almost i m p o s s i b l e , and i n f a c t t h r e e of the fou r Outside Agency A f f i l i a t e d P e r s o n s i n t e r v i e w e d , p e r c e i v e d t h e s u p e r v i s i o n and support of v o l u n t e e r s t o be inadequate. And the t h i r d i s s u e i s : (3) t h a t with regard t o C l i e n t Care Case Managers, O u t s i d e Agency A f f i l i a t e d 151 Persons are confused about who they should t a l k t o about g e t t i n g a buddy or a home care v o l u n t e e r : i f you want a home support v o l u n t e e r , you can t a l k t o [one C l i e n t Care Case Manager] and [ a n o t h e r C l i e n t Care Case Manager] i s d e f i n i t e l y buddies, so i f you want t o t a l k about buddies, you c a l l [that C l i e n t Care Case Manager] O r i g i n a l l y i n the o r g a n i z a t i o n , t h i s i s how t h i n g s were arranged. And then, i t changed, and a l l C l i e n t Care Case Managers were r e s p o n s i b l e f o r a s s i g n i n g and s u p e r v i s i n g buddies and home care v o l u n t e e r s themselves t o anyone on t h e i r caseloads where i t was requested and a p p r o p r i a t e . The s i t u a t i o n has moved t h e n , from C l i e n t C a r e Case Managers having only one area of r e s p o n s i b i l i t y each with r e g a r d t o v o l u n t e e r s , e i t h e r they looked a f t e r e v e r y t h i n g t o do with buddies or home care v o l u n t e e r s , t o having b o t h a r e a s o f r e s p o n s i b i l i t y , b u d d i e s and home c a r e v o l u n t e e r s . But has t h e s i t u a t i o n r e a l l y changed? C l i e n t Care Case Managers say i t has, but people on the ou t s i d e do not p e r c e i v e any d i f f e r e n c e . Why? He r e i n l i e s another p o s s i b l e reason f o r why v o l u n t e e r s are not as w e l l s u p e r v i s e d and supported as many would l i k e . What steps c o u l d be taken t o minimize the c o n f u s i o n a s s o c i a t e d with these t h r e e content r e l a t e d i s s u e s ? Do t h e C l i e n t Care Case Managers and t h e V o l u n t e e r C o o r d i n a t o r need t o c o l l a b o r a t e t o e s t a b l i s h some r u l e s o f o p e r a t i n g t o e n s u r e b e t t e r communication, and t o ensure each knows which r e s p o n s i b i l i t i e s are t h e i r ' s ? Do 152 C l i e n t Care Case Managers need to take another look at how they do f u n c t i o n , and decide whether i t should be a c c o r d i n g t o t h e o r i g i n a l or t h e new d i v i s i o n o f r e s p o n s i b i l i t i e s ? And do they need t o do some p u b l i c r e l a t i o n s work to ensure t h a t others i n the AIDS network are aware of how they do a c t u a l l y i n t e n d to operate? I t seems t h a t some c l a r i f i c a t i o n i s needed around dual r o l e s h e l d by v o l u n t e e r s i n the agency, and around job r e s p o n s i b i l i t i e s of each C l i e n t Care Case Manager as they r e l a t e t o those of the V o l u n t e e r C o o r d i n a t o r . SUMMARY Ha v i n g r e v i e w e d d a t a c h a r a c t e r i s t i c o f t h e v o l u n t e e r - a g e n c y subsystem a c c o r d i n g t o t h e network a n a l y s i s c o n c e p t s o f f r e q u e n c y , r e c i p r o c i t y , e s t e e m / e m o t i o n a l s u p p o r t , i n f o r m a t i o n a l s u p p o r t and content, i t becomes c l e a r : (1) t h a t C l i e n t Care Case Managers are not i n touch with v o l u n t e e r s as o f t e n as they would l i k e , which i s more of an i s s u e f o r some v o l u n t e e r s than o t h e r s ; (2) t h a t although the agency sees i t s e l f as having a l o t of r e s p o n s i b i l i t y t o i n i t i a t e c o n t a c t through the v o l u n t e e r - C l i e n t Care Case Manager r e l a t i o n s h i p and t h e Buddy Support Group, t h e r e a r e i n h e r e n t s t r u c t u r a l d i f f i c u l t i e s t h a t make i t hard f o r v o l u n t e e r s t o respond; (3) t h a t v o l u n t e e r s f e e l both supported and unsupported i n t h e i r i n t e r a c t i o n s with the agency v i a the C l i e n t Care Case Managers and the Buddy 153 Support Group; (4) t h a t the i n f o r m a t i o n a l support o f f e r e d through the v o l u n t e e r core t r a i n i n g i s of a h i g h c a l i b r e , w h i l e t h e r e i s room f o r improvement w i t h r e g a r d t o i n f o r m a t i o n a l s u p p o r t p r o v i d e d by C l i e n t Care Case Managers; and (5) t h a t t h e r e i s c o n s i d e r a b l e c o n f u s i o n f o r Outside Agency A f f i l i a t e d Personnel i n knowing when t o c o n t a c t C l i e n t Care Case Managers and the V o l u n t e e r C o o r d i n a t o r ; these t o g e t h e r no doubt h e l p t o e x p l a i n the p e r c e i v e d l a c k of s u p e r v i s i o n i n p l a c e f o r v o l u n t e e r s . These f i n d i n g s , coupled with those of the l a s t two chapters form the b a s i s f o r the r e s e a r c h summary and recommendations p r e s e n t e d i n the next, and f i n a l chapter. 154 CHAPTER SIX: SUMMARY AND RECOMMENDATIONS Having o u t l i n e d i n Chapter One the i n c i d e n c e of AIDS and HIV i n f e c t i o n , the a p p l i c a t i o n of the key t e n e t s of the h o s p i c e / p a l l i a t i v e care p h i l o s o p h y and approach t o PWAs, and t h e c u r r e n t f e d e r a l and p r o v i n c i a l h o s p i c e / p a l l i a t i v e care p o l i c i e s and programs i n p l a c e , the need t o c r i t i c a l l y e v a l u a t e these programs as a means of e n s u r i n g t h e i r c o n t i n u a n c e and p r o l i f e r a t i o n has become e v i d e n t . C h a p t e r Two s p e c i f i e s t h e r e s e a r c h d e s i g n and methodology employed t o ev a l u a t e one such program, the Buddy/Home Care Program operated by AIDS Vancouver. The r e s e a r c h r e s u l t s and r e l a t e d analyses, p r e s e n t e d i n Chapters Three, Four, and F i v e have focused on c h a r a c t e r i s t i c s of the f o u r PWA S o c i a l Networks i n t h e i r e n t i r e t y , t h e v o l u n t e e r - c l i e n t r e l a t i o n s h i p subsystem, and t h e v o l u n t e e r - a g e n c y r e l a t i o n s h i p subsystem r e s p e c t i v e l y . The two t a s k s of t h i s f i n a l c hapter then are: (1) to make recommendations based on a summary o f t h e s t u d y ' s f i n d i n g s ; and (2) t o make recommendations b a s e d on a summary o f t h e many t h e o r e t i c a l and p o l i c y i s s u e s r a i s e d by t h i s r e s e a r c h with r e g a r d t o the p r o v i s i o n of h o s p i c e / p a l l i a t i v e care f o r persons with AIDS. 155 SUMMARY AND RECOMMENDATIONS WITH REGARD TO THE BUDDY/HOME CARE PROGRAM In endeavouring t o present a summary of the r e s u l t s of t h i s study of the Buddy/Home Care Program then, i t i s evi d e n t t h a t the f o l l o w i n g t o p i c s have emerged: - v o l u n t e e r s e l e c t i o n - v o l u n t e e r t r a i n i n g - the matching of v o l u n t e e r s and c l i e n t s - t h e dynamics and a c t i v i t i e s o c c u r r i n g i n t h e v o l u n t e e r - c l i e n t r e l a t i o n s h i p s - the support and s u p e r v i s i o n of v o l u n t e e r s F i n d i n g s a s s o c i a t e d with each of these t o p i c s w i l l be summarized once a g a i n u t i l i z i n g t h e network c h a r a c t e r i s t i c s framework employed a l l along. D i s c u s s i o n of each t o p i c w i l l be concluded with the p r e s e n t a t i o n of the r e s u l t a n t recommendation(s). V o l u n t e e r S e l e c t i o n As a r e s u l t of d i s c u s s i n g the content and i n t e n s i t y a s s o c i a t e d w i t h r e l a t i o n s h i p s between buddy/home c a r e v o l u n t e e r s and PWA c l i e n t s the p o i n t was a l l u d e d t o t h a t some of the r e l a t i o n s h i p s have become too i n t e n s e , too em o t i o n a l l y charged, too c l o s e f o r the w e l l - b e i n g of a l l concerned, and one of the reasons f o r t h i s was exp l o r e d . The q u e s t i o n was posed: what are the p e r s o n a l a t t r i b u t e s and c i r c u m s t a n c e s o f some o f t h e v o l u n t e e r s b e i n g s e l e c t e d t o p r o v i d e buddy/home care s e r v i c e ? One of the PWAs maintained t h a t some v o l u n t e e r s get i n v o l v e d because of t h e i r own needs - out of l o n e l i n e s s and a need f o r f r i e n d s h i p . While a l l v o l u n t e e r s b r i n g with them a 156 s e r i e s of needs, d e s i r e s and i n t e r e s t s though, t h e r e are some t h a t impede and some t h a t enhance the c o n t r i b u t i o n s t h a t can be made. One Outside Agency A f f i l i a t e d Person v e r b a l i z e d the need of some v o l u n t e e r s t o a l l e v i a t e t h e i r f e a r s of becoming HIV p o s i t i v e by p r o v i d i n g s e r v i c e , i . e . t h i n k i n g they w i l l not t e s t p o s i t i v e i f they care f o r i n d i v i d u a l s who do. Yet a n o t h e r O u t s i d e Agency A f f i l i a t e d P e r s o n n o t e d t h a t t h e n e e d i n e s s o f some v o l u n t e e r s i s d i r e c t l y r e l a t e d t o the f a c t t h a t they themselves are HIV p o s i t i v e . These kinds of needs, while b e i n g very v a l i d , may impede v o l u n t e e r s ' a b i l i t i e s t o f u n c t i o n as v o l u n t e e r s , because they may be i n need of as much support as the c l i e n t s they are to be s e r v i n g . Even though they may have the a b i l i t y t o t r u l y understand what PWA c l i e n t s are coping with, v o l u n t e e r s having t h e i r own o n g o i n g d i f f i c u l t i e s may be u n a b l e t o p r o v i d e t h e o b j e c t i v e , e m p a t h e t i c s u p p o r t t h a t AIDS V a n c o u v e r i s b e i n g f u n d e d t o o f f e r . T h i s i s not t o say suc h i n d i v i d u a l s ' s upportiveness i s not v a l u a b l e ; i t j u s t i s not the k i n d of support f o r which funders are paying. Rather, i t belongs i n a peer support group s e t t i n g . T herefore i t i s recommended: THAT AN ASSESSMENT OF POTENTIAL VOLUNTEERS' MOTIVATION FOR VOLUNTEERING, AND LIFE CIRCUMSTANCES WITH REGARD TO PERSONAL ISSUES AND COMMITMENTS TO OTHERS BE BUILT INTO THE VOLUNTEER SCREENING AND SELECTION PROTOCOL THAT POTENTIAL VOLUNTEERS WHO ARE IN PERSONAL CRISES THAT HAVE THE POTENTIAL TO AFFECT THEIR ABILITY TO 157 CONTRIBUTE, BE ASKED TO REAPPLY AT A LATER DATE WHEN THEIR LIVES ARE MORE STABLE Volunteer Training In examining the volunteer-agency subsystem, the volunteer t r a i n i n g , core - f o r a l l volun t e e r s , and s p e c i f i c - for buddy/home care volunteers, was recognized as one of the agency's main vehicles for providing i n f o r m a t i o n a l support to vo l u n t e e r s . Almost without exception the Core T r a i n i n g f o r a l l has been h i g h l y acclaimed, and t h i s i s to be c e l e b r a t e d . A few suggestions f o r items to be in c l u d e d i n the fut u r e though, have been mentioned by some of the interviewees as being of p a r t i c u l a r assistance to buddy/home care v o l u n t e e r s . Information on the death process and an overview of the major r e l i g i o n s ' views of death; a more r e a l i s t i c as opposed to the current i d e a l i s t i c representation of what the buddy/home care volunteer-c l i e n t r elationship might be l i k e ; as well as more of a focus on the development of s e l f - p r e s e r v a t i o n s k i l l s enabling a more empathic and objective as opposed to sympathetic and s u b j e c t i v e emotional involvement are among the suggestions for future i n c l u s i o n i n either the Core or Buddy/Home Care s p e c i f i c Training. Including i n the t r a i n i n g , a more r e a l i s t i c representation of the nature of the volunteer-client relationship as well as the personal resources required, would perhaps serve as yet another means - i n addition to the amended volunteer 158 s c r e e n i n g process - of s e n s i t i z i n g v o l u n t e e r s t o the e m o t i o n a l commitment t h e y a r e making by becoming a buddy/home care v o l u n t e e r . Therefore i t i s recommended: THAT CONSIDERATION BE GIVEN TO INCLUDING, EITHER IN THE CORE OR BUDDY/HOME CARE SPECIFIC TRAININGS, MORE ON DEATH AND THE VARIOUS RELIGIOUS ORIENTATIONS TO IT, A MORE REALISTIC PICTURE OF VOLUNTEER-CLIENT RELATIONSHIPS, AND SKILLS OF SELF-PRESERVATION The Matching of V o l u n t e e r s and C l i e n t s In examining the volunteer-agency subsystem, i t was d i s c o v e r e d t h a t the agency has a c r u c i a l r o l e t o p l a y i n p r o v i d i n g and e l i c i t i n g i n f o r m a t i o n t o and from v o l u n t e e r s and c l i e n t s as a means of matching them up. Un f o r t u n a t e l y , the minimal amount of data on the matching of v o l u n t e e r s with c l i e n t s has served only t o r e v e a l a number of quest i o n s about why some matches are extremely s u c c e s s f u l , w h i l e o t h e r s a r e n o t : what k i n d o f i n f o r m a t i o n i s s o l i c i t e d from v o l u n t e e r s and c l i e n t s by C l i e n t Care Case Managers t o f a c i l i t a t e the matches? How do t h e i n i t i a l m e e t i n g s between v o l u n t e e r s and c l i e n t s take p l a c e , and how should they take p l a c e ? What t h i n g s do v o l u n t e e r s and c l i e n t s each know about one another p r i o r t o t h i s i n i t i a l meeting? Given the number of quest i o n s p e r t a i n i n g t o the methodology a s s o c i a t e d w i t h t h e matches, i t i s recommended: 159 THAT THE PROCESS FOR MATCHING VOLUNTEERS AND CLIENTS BE EXAMINED IN TERMS OF THE QUESTIONS RAISED WITH A VIEW TO MAKING IMPROVEMENTS IF, AND/OR WHERE NECESSARY The Dynamics and A c t i v i t i e s O c c u r r i n g i n the V o l u n t e e r - C l i e n t R e l a t i o n s h i p s A n a l y z i n g t h e d a t a a c c o r d i n g t o t h e network c h a r a c t e r i s t i c s o f f r e q u e n c y , c o n t e n t and i n t e n s i t y , r e c i p r o c i t y , and the presence or absence of f i v e support f u n c t i o n s - esteem, i n f o r m a t i o n a l , i n s t r u m e n t a l , companionship, and m o t i v a t i o n a l - has r e v e a l e d with only a few minor e x c e p t i o n s t h a t t h e v o l u n t e e r - c l i e n t r e l a t i o n s h i p s a r e i n k e e p i n g w i t h t h e agency's e x p e c t a t i o n s as a r t i c u l a t e d v e r b a l l y - due t o the absence of w r i t t e n p o l i c y - by two C l i e n t Care Case Managers. In a d d i t i o n i t a l s o became c l e a r t h a t t h e r e i s no s i g n i f i c a n t d i f f e r e n c e between r e l a t i o n s h i p s between buddies and c l i e n t s and home care v o l u n t e e r s and c l i e n t s . A summary of the f i n d i n g s with r e g a r d t o a l l of the network c h a r a c t e r i s t i c s w i l l be f o l l o w e d by a s e r i e s of recommendations d e s i g n e d t o improve v o l u n t e e r - c l i e n t r e l a t i o n s h i p s as a whole. Frequency While C l i e n t Care Case Managers c i t e d a minimum of fo u r hours per week with no upper maximum with regard t o the t o t a l amount of time spent with c l i e n t s , v o l u n t e e r s a c t u a l l y spent anywhere from two t o twenty hours a week, over anywhere from one to seven in-person or telephone 160 contacts i n any given week. This v a r i a t i o n was postulated to be attributable to variations i n the PWAs' stages of i l l n e s s , i n the PWAs' ind i v i d u a l needs, and i n the volunteers' other obligations and commitments, as well as t h e i r a b i l i t i e s to set l i m i t s . A number of questions were raised with regard to the most appropriate s p e c i f i c a t i o n of minimum and maximum amounts of time spent by volunteers with t h e i r c l i e n t s . Intensity and Content Analysis revealed the presence of a continuum of relationship dynamics ranging i n intensity, from the less intense position of a volunteer-client dynamic, to a middle po s i t i o n of a f r i e n d - f r i e n d dynamic, to a very intense p o s i t i o n of a p a r e n t - c h i l d dynamic. Each relationship examined appears to be composed of at least two of these dynamics or midpoints between, simultaneously. Most of the relationships are positioned around the volunteer-client and f r i e n d - f r i e n d portion of the continuum, with a more apparent emphasis i n the relationships on the friendship component. It was asked: should volunteers f i l l more than one role of being a volunteer, and how intense should t h e i r relationships with c l i e n t s be? Reciprocity A by-product of an a l y z i n g the v o l u n t e e r - c l i e n t relationships with regard to in t e n s i t y and content, was the r e c o g n i t i o n of a h i g h degree of r e c i p r o c i t y i n the r e l a t i o n s h i p s , e s p e c i a l l y i n those of more of a f r i e n d -f r i e n d and p a r e n t - c h i l d nature. Although u n t e s t e d i n the l i t e r a t u r e , r e c i p r o c i t y i s expected t o have a p o s i t i v e e f f e c t on h e a l t h s t a t u s , even i f the reso u r c e s exchanged are not the same. Support F u n c t i o n s E m o t i o n a l l y s u p p o r t i v e f u n c t i o n s e x p e r i e n c e d by the c l i e n t s i n the r e l a t i o n s h i p s i n c l u d e knowing t h a t t h e r e i s : someone p r e s e n t t o t a l k w i t h , someone who w i i l l i s t e n , someone who can be t r u s t e d , and someone who understands. E m o t i o n a l l y s u p p o r t i v e f u n c t i o n s c a r r i e d out by v o l u n t e e r s t h a t c r o s s t h e l i n e between a v o l u n t e e r - c l i e n t and a f r i e n d - f r i e n d r e l a t i o n s h i p , such as being sympathetic i n s t e a d of empathetic occur, though. S u p p o r t p r o v i d e d by v o l u n t e e r s i n terms o f i n f o r m a t i o n i n c l u d e s the g e t t i n g of i n f o r m a t i o n about s e r v i c e s a v a i l a b l e , which i s c h a r a c t e r i s t i c o f a v o l u n t e e r - c l i e n t r e l a t i o n s h i p , as w e l l as the g i v i n g of a d v i c e , u n s o l i c i t e d o r o t h e r w i s e by t h e v o l u n t e e r , c h a r a c t e r i s t i c of a much c l o s e r r e l a t i o n s h i p than one of a v o l u n t e e r and c l i e n t . Should v o l u n t e e r s be g i v i n g advice of any kind, s o l i c i t e d or otherwise? V o l u n t e e r s f o r the most p a r t p r o v i d e a p p r o p r i a t e i n s t r u m e n t a l s u p p o r t i n t h e i r v o l u n t e e r - c l i e n t r e l a t i o n s h i p s although they have been known t o become l e g a l l y i n v o l v e d with t h e i r c l i e n t s , an involvement t h a t 162 i s g e n e r a l l y d i s c o u r a g e d ( a l t h o u g h t h e r e have been exceptions) by AIDS Vancouver. Of i n t e r e s t was t h a t some v o l u n t e e r s have become i n v o l v e d i n p r o v i d i n g p e r s o n a l care such as changing d i a p e r s and d i s p e n s i n g medication. Are s t a f f aware of t h i s , and what i f any are the l e g a l i m p l i c a t i o n s ? In terms of companionship support, v o l u n t e e r s have once again c r o s s e d the l i n e between a v o l u n t e e r - c l i e n t and a f r i e n d - f r i e n d r o l e by d o i n g such t h i n g s as c o n s i d e r i n g t a k i n g v a c a t i o n s , l y i n g i n bed, and exchanging g i f t s with t h e i r c l i e n t s . The l a c k of m o t i v a t i o n a l support . was noted with s u r p r i s e and concern. The Recommendations The l i t e r a t u r e on network c h a r a c t e r i s t i c s i s e s s e n t i a l l y of l i t t l e h e l p i n making any programmatic suggestions due to i t s i n c o n c l u s i v e n e s s . I t seems t o me though, f o r t h e u l t i m a t e good of t h e c l i e n t s , v o l u n t e e r s , and AIDS Vancouver i t s e l f , t h a t v o l u n t e e r s should be v o l u n t e e r s p r i m a r i l y , not f r i e n d or parent f i g u r e s t o t h e i r c l i e n t s . The p a r e n t - c h i l d dynamic d i s c o v e r e d i s most i n a p p r o p r i a t e i n l i g h t of the agency's o v e r a l l commitment t o t h e i d e a of empowerment. To f a c i l i t a t e t h i s s h i f t i n r o l e s (which does not mean t h a t v o l u n t e e r s and c l i e n t s cannot s h a r e r e c i p r o c a l r e l a t i o n s h i p s ) , C l i e n t Care Case Managers w i l l need t o 163 s t r u g g l e with the d i f f i c u l t i e s i n d i s t i n g u i s h i n g between b e i n g a v o l u n t e e r and being a f r i e n d . That i s , they w i l l need t o c l a r i f y t h e i r e x p e c t a t i o n s of v o l u n t e e r s i n terms of t h e esteem, i n f o r m a t i o n a l , i n s t r u m e n t a l , companionship, and m o t i v a t i o n a l types of support they should be p r o v i d i n g . Only a f t e r having g r a p p l e d with t h i s f r i e n d - f r i e n d , versus v o l u n t e e r - c l i e n t i s s u e , w i l l C l i e n t Care Case Managers be able t o more c l e a r l y s t a t e t h e i r e x p e c t a t i o n s about v o l u n t e e r s g i v i n g a d v i c e , g e t t i n g l e g a l l y i n v o l v e d , p r o v i d i n g p e r s o n a l care, and so on. In the meantime, as a means of lo w e r i n g the i n t e n s i t y i n at l e a s t some of the r e l a t i o n s h i p s , and f a c i l i t a t i n g the s e l f - p r e s e r v a t i o n of v o l u n t e e r s , AIDS Va n c o u v e r s h o u l d f o l l o w t h e l e a d of o t h e r a g e n c i e s u t i l i z i n g v o l u n t e e r s as support workers. These agencies have implemented time g u i d e l i n e s , thereby l i m i t i n g the amount of time v o l u n t e e r s spend with t h e i r c l i e n t s on the s h o r t e r , week-to-week and t h e l o n g e r , month-to-month term. Therefore i t i s recommended: THAT CLIENT CARE CASE MANAGERS CLARIFY THEIR EXPECTATIONS OF VOLUNTEERS REGARDING EMOTIONAL DISTANCE AND CLOSENESS THAT CLIENT CARE CASE MANAGERS INTERVENE IN PARENT-CHILD DYNAMICS IN VOLUNTEER-CLIENT RELATIONSHIPS BY PROVIDING THE NECESSARY SUPPORT AND APPROPRIATE REFERRALS AS A MEANS OF EMPOWERING CLIENTS IN ACCORDANCE WITH AIDS VANCOUVER'S MANDATE THAT A MINIMUM AMOUNT OF CONTACT NEGOTIATED BETWEEN THE VOLUNTEER AND THE CLIENT, AND A MAXIMUM NUMBER OF HOURS OF CONTACT PER WEEK BE ESTABLISHED TO KEEP 164 OVER-INVOLVEMENT IN CHECK AND THAT WHERE CLIENTS NEED THE SUPPORT OF MORE THAN ONE VOLUNTEER, GIVEN THE NEW TIME CONSTRAINTS, THAT ADDITIONAL BUDDY/HOME CARE VOLUNTEERS BE ADDED TO SHARE THE LOAD The Support and S u p e r v i s i o n of V o l u n t e e r s V o l u n t e e r s p o t e n t i a l l y r e c e i v e s u p p o r t and a r e su p e r v i s e d v i a t h e i r r e l a t i o n s h i p s with t h e i r C l i e n t Care Case Managers and the Vo l u n t e e r C o o r d i n a t o r , and v i a t h e i r involvement i n the Buddy Support Group. Summaries of f i n d i n g s of frequency, r e c i p r o c i t y , esteem support, and c o n t e n t w i l l be f o l l o w e d by a s e r i e s o f recommendations d e s i g n e d t o improve s u p p o r t and s u p e r v i s i o n mechanisms. Frequency V o l u n t e e r s had v e r y i n f r e q u e n t c o n t a c t w i t h t h e agency v i a C l i e n t Care Case Managers and v i a the Buddy Su p p o r t Group. S t a f f members e x p r e s s e d c o n s i d e r a b l e d i s c o m f o r t about t h i s ; some v o l u n t e e r s d i d as w e l l , and some d i d not. The q u e s t i o n was r a i s e d : how f r e q u e n t l y s h o u l d v o l u n t e e r s and s t a f f be i n c o n t a c t , and how f r e q u e n t l y should v o l u n t e e r s have t o a t t e n d the Buddy Support Group? R e c i p r o c i t y With r e g a r d t o the amount of gi v e and take i n the con t a c t s between v o l u n t e e r s and the agency, the C l i e n t Care Case Managers saw t h e m s e l v e s as h a v i n g t h e r e s p o n s i b i l i t i e s of i n i t i a t i n g two-way communication, of 165 i n i t i a t i n g c o n t a c t with v o l u n t e e r s a f t e r the death of t h e i r c l i e n t s , and of p r o v i d i n g the Buddy Support Group. The two-way communication i d e a l was r e l a t i v e l y u n r e a l i z e d and was g r e a t l y overshadowed by the o v e r a l l l a c k of any k i n d of c o n t a c t . C l i e n t Care Case Managers and some v o l u n t e e r s , as was mentioned above, were u n s a t i s f i e d as a r e s u l t . No data were c o l l e c t e d t o support the c o n v i c t i o n t h a t C l i e n t Care Case Managers i n i t i a t e c o n t a c t with v o l u n t e e r s once t h e i r c l i e n t s d i e . In a d d i t i o n , d e s p i t e the d i f f i c u l t i e s i n v o l v e d i n b e i n g sure t o p r o v i d e the Buddy Support Group, v o l u n t e e r s - a f t e r the f i r s t few m e e t i n g s - have not on t h e whole f e l t c o m p e l l e d t o r e c i p r o c a t e by a t t e n d i n g r e g u l a r l y . Given a l l t h i s , the f o l l o w i n g q u e s t i o n s were r a i s e d : whose r e s p o n s i b i l i t y i s i t t o e n s u r e c o n t a c t between t h e v o l u n t e e r s and t h e agency; how does and how s h o u l d f o l l o w up w i t h a v o l u n t e e r a f t e r a c l i e n t has d i e d be c a r r i e d out; and how should the Buddy Support Group be organized, i f i t i s deemed a v i a b l e v e h i c l e , once improved, f o r p r o v i d i n g support and s u p e r v i s i o n f o r v o l u n t e e r s ; what changes are needed t o encourage v o l u n t e e r s to attend? Esteem Support V o l u n t e e r s p o t e n t i a l l y r e c e i v e esteem support as a r e s u l t o f t h e i r i n t e r a c t i o n s w i t h C l i e n t Care Case Managers, and as a r e s u l t of t h e i r involvement i n the Buddy Support Group. 166 V o l u n t e e r s e x p r e s s e d f e e l i n g b o t h s u p p o r t e d and unsupported i n t h e i r r e l a t i o n s h i p s with C l i e n t Care Case Managers. Some v o l u n t e e r s f e l t t h a t the C l i e n t Care Case Managers were a v a i l a b l e f o r them t o t a l k t o , were good at a s k i n g how t h i n g s were going, were a p p r e c i a t i v e , and were e n c o u r a g i n g o f v o l u n t e e r s t o s e l f - p r e s e r v e . O t h e r s experienced f e e l i n g abandoned, unappreciated, a bother, and c h e c k e d up on. Q u e s t i o n s were p o s e d c o n c e r n i n g p o s s i b l e m e t h o d o l o g i e s f o r r e d u c i n g t h e s e n e g a t i v e f e e l i n g s . In terms o f t h e Buddy Su p p o r t Group, o n l y one v o l u n t e e r e x p l i c i t l y i d e n t i f i e d the group as s u p p o r t i v e . Everyone e l s e - v o l u n t e e r s , in-house, and Outside Agency A f f i l i a t e d P e r s o n n e l a l i k e - have f o c u s e d on t h e numerous problems a s s o c i a t e d with the group. Being t o l d they are not e n t i t l e d t o support, being t o l d t h a t i t i s mandatory to attend, a s s i g n e d to a c l i e n t or not, but not b e i n g p e r m i t t e d to speak i f unassigned, b e i n g t o l d t h a t names and i n f o r m a t i o n about c l i e n t s from a d i f f e r e n t but very c l o s e l y r e l a t e d program cannot be d i s c u s s e d were a l l i s s u e s t h a t have been r a i s e d t h a t c o n t r i b u t e t o the l a c k o f t r u s t and t h e r e f o r e s u p p o r t a s s o c i a t e d w i t h t h e group. Once again, q u e s t i o n s were put forward to do with the pro's and con's of mandatory attendance and under what types of circumstances, and t o do with more f l e x i b l e r u l e s of c o n f i d e n t i a l i t y . 167 Content There was a l s o some c o n f u s i o n expressed by Outside Agency A f f i l i a t e d Personnel concerning dual r o l e s h e l d by v o l u n t e e r s , and the o v e r l a p p i n g of job r e s p o n s i b i l i t i e s between C l i e n t Care Case Managers and between these s t a f f members and the V o l u n t e e r C o o r d i n a t o r . S p e c i f i c a l l y the data r e v e a l e d t h a t o u t s i d e r s to the agency i n the AIDS network have had d i f f i c u l t y u n d e r s t a n d i n g who i s r e s p o n s i b l e f o r buddy/home care v o l u n t e e r s - p r e - and post-assignment - the C l i e n t Care Case Managers or the V o l u n t e e r C o o r d i n a t o r , or both. T h i s l a c k of c l a r i t y has r e s u l t e d i n v o l u n t e e r s b e i n g removed from p o s i t i o n s without a l l a p p r o p r i a t e people being n o t i f i e d , and b e i n g r e - a s s i g n e d t o p o s i t i o n s f o r which they have been deemed by someone e l s e i n a u t h o r i t y t o be u n q u a l i f i e d . Questions were e n t e r t a i n e d about how t o minimize the bewilderment c r e a t e d by t h i s set of circumstances. Recommendations As was mentioned p r e v i o u s l y , the l i t e r a t u r e with r e g a r d t o frequency, r e c i p r o c i t y , esteem support, and c o n t e n t p r o v i d e s few s o l i d c l u e s as t o p o s s i b l e a l t e r a t i o n s t o make t o improve the p r o v i s i o n of support and s u p e r v i s i o n t o v o l u n t e e r s . R e s u l t a n t recommendations thus, are based s o l e l y on my own sense of l o g i c , and my experience as a v o l u n t e e r and a s u p e r v i s o r of v o l u n t e e r s i n the f i e l d . 168 Although I do not know e x a c t l y how f r e q u e n t l y C l i e n t Care Case Managers and v o l u n t e e r s should be i n contact, what i s c l e a r i s t h a t i t must be r e g u l a r enough f o r C l i e n t Care Case Managers t o be c o n f i d e n t they are up-to-date on what i s happening i n the r e l a t i o n s h i p s . Regular c o n t a c t s s h o u l d p e r h a p s be p r e - a r r a n g e d so t h a t v o l u n t e e r s , c l i e n t s , and s t a f f are aware at the outset, and can thus expect, r a t h e r than be s u r p r i s e d , t o be i n touch. Under such an arrangement v o l u n t e e r s might f e e l more supported and l e s s f e a r f u l of c r i t i c i s m . In a d d i t i o n i t c onveys t h e message t o v o l u n t e e r s t h a t t h e y a r e important enough t o s t a f f t o be scheduled i n t o t h e i r days along with a l l t h e i r other important d a i l y a c t i v i t i e s . As l o ng as some of the con t a c t i s in-person, a c e r t a i n amount of telephone c o n t a c t i s probably a c c e p t a b l e . Regardless of how f r e q u e n t l y and how much C l i e n t Care Case Managers encourage v o l u n t e e r s t o be i n con t a c t w i t h them, r e g u l a r c o n t a c t i s e s s e n t i a l l y a. s t a f f r e s p o n s i b i l i t y . C l i e n t Care Case Managers a r e accountable t o c l i e n t s , v o l u n t e e r s , and funders t o ensure the s a f e t y and w e l l - b e i n g of a l l concerned, and to ensure the o v e r a l l smooth-running of, and the continued funding f o r , t h e Buddy/Home Care Program. W h i l e s t a f f r e s p o n s i b i l i t y f o r contact i s i n e f f e c t at a l l times, i t i s of utmost importance e s p e c i a l l y once a v o l u n t e e r ' s c l i e n t has d i e d . Mandatory l e a v e s o f absence, t h e lengths of which should perhaps be n e g o t i a b l e based upon the p a r t i c u l a r s e t s of circumstances i n which v o l u n t e e r s f i n d themselves, coupled with a continued commitment t o r e c e i v e support from C l i e n t Care Case Managers and the Buddy Support Group, are e s s e n t i a l . V o l u n t e e r s should not be accepted t o serve i f they are u n w i l l i n g t o make commitments to be supported and s u p e r v i s e d i n whatever ways p r o v i d e d by the agency, as p a r t of t h e i r v o l u n t a r y r e s p o n s i b i l i t i e s with the agency. W h i l e s u g g e s t i o n s have been made as t o how t o improve the s u p e r v i s i o n of v o l u n t e e r s , l i t t l e has yet been s a i d s p e c i f i c a l l y about improving the c u r r e n t means of p r o v i d i n g support to v o l u n t e e r s . What i s the best way t o p r o v i d e support - BECAUSE IT IS VERY NECESSARY - t o buddy/home care v o l u n t e e r s so t h a t they do indeed f e e l supported even though they must a l s o be supervised? I t seems t h a t a two-pronged approach, combined with a l l of the above-mentioned s t r a t e g i e s , i s the answer. F i r s t , t h e Buddy Su p p o r t Group needs t o be improved; b a d l y needed are reasonable attendance g u i d e l i n e s , coupled with the employment of r e l i a b l e , s k i l l e d f a c i l i t a t o r s - who are f a m i l i a r with the u t i l i z a t i o n of "rounds" which g i v e everyone an o p p o r t u n i t y to share, and the process of e s t a b l i s h i n g a p p r o p r i a t e r u l e s of c o n f i d e n t i a l i t y . And second, teams of v o l u n t e e r s a s s i g n e d t o each c l i e n t can be e n c o u r a g e d t o a c t as a s u p p o r t network f o r one another. 170 And n a t u r a l l y , both support and s u p e r v i s i o n of volun t e e r s i s best achieved when c l e a r l i n e s of communication and r e s p o n s i b i l i t y for a l l s t a f f concerned are a r t i c u l a t e d and made known to c l i e n t s , volunteers, and Outside Agency A f f i l i a t e d Personnel a l i k e . Therefore i t i s recommended: THAT AIDS VANCOUVER TAKE RESPONSIBILITY FOR INITIATING REGULARLY SCHEDULED MEETINGS INCLUDING AN ANNUAL REVIEW WITH ALL BUDDY/HOME CARE VOLUNTEERS AND REGULARLY SCHEDULED INTERVALS OF TELEPHONE CONTACT THAT THE CURRENT MEANS OF PROVIDING SUPPORT TO VOLUNTEERS ONCE THEIR CLIENTS HAVE DIED BE EXAMINED, ADDED TO, AND/OR IMPROVED BY CLIENT CARE CASE MANAGERS AS NECESSARY THAT LEAVES OF ABSENCE BE MANDATORY FOR ALL VOLUNTEERS ONCE THEIR CLIENTS HAVE DIED, BUT THAT THE LENGTH BE NEGOTIATED WITH CLIENT CARE CASE MANAGERS AFTER A CAREFUL ASSESSMENT OF THE VOLUNTEERS' EMOTIONAL STATES, LIFE COMMITMENTS, ETC. THAT AT THE OUTSET, VOLUNTEERS BE MADE AWARE THAT THEY MUST MAKE A COMMITMENT TO RECEIVE SUPPORT AND SUPERVISION ACCORDING TO SPECIFIED GUIDELINES PRIOR TO BEING ACCEPTED AS BUDDY/HOME CARE VOLUNTEERS THAT CLIENT CARE CASE MANAGERS CONTINUALLY REMIND VOLUNTEERS THAT WITHOUT THEM, THEY WOULD BE UNABLE TO DO THE JOB, AND THAT THEY WELCOME HEARING FROM THEM, AT THE SAME TIME SPECIFYING THE BEST WAY(S) TO MAKE CONTACT THAT AIDS VANCOUVER CONTINUE TO HOST THE WELL-RECEIVED VOLUNTEER APPRECIATION EVENTS HELD EACH CHRISTMAS, AND EACH SUMMER THAT RELIABLE AND SKILLED GROUP FACILITATION UTILIZING ROUNDS WHICH GIVE EVERYONE AN OPPORTUNITY TO SPEAK, WITH MORE FLEXIBLE, APPROPRIATE RULES OF CONFIDENTIALITY AND ATTENDANCE BE SECURED FOR THE BUDDY SUPPORT GROUP AS A MEANS OF DETERMINING WHETHER OR NOT IN THIS FORMAT THE GROUP IS HELPFUL TO VOLUNTEERS THAT THE APPROPRIATENESS OF CLIENT CARE CASE 171 MANAGERS BEING INVOLVED IN THE FACILITATION OF THE BUDDY SUPPORT GROUP BE DETERMINED AND IF DEEMED INAPPROPRIATE, THAT WORKABLE LINES OF COMMUNICATION BE ESTABLISHED BETWEEN THE FACILITATOR(S) OF THE BUDDY SUPPORT GROUP AND THE CLIENT CARE CASE MANAGERS THAT SUPPORT ALSO BE PROVIDED FOR VOLUNTEERS FROM OTHER PROGRAMS SHOULD THEY NOT, DUE TO RULES OF CONFIDENTIALITY BE ABLE TO PARTICIPATE IN THE BUDDY SUPPORT GROUP AS IT IS CURRENTLY ORGANIZED THAT AIDS VANCOUVER'S CLIENT CARE CASE MANAGERS FORMALLY ENCOURAGE VOLUNTEERS ASSIGNED TO EACH CLIENT TO ACT AS A SUPPORT NETWORK TO ONE ANOTHER, WHICH MAY MEET AS A GROUP PERIODICALLY WITH AND WITHOUT THE CLIENT CARE CASE MANAGER THAT IT BE DECIDED WHO IS RESPONSIBLE FOR BUDDIES, AND FOR HOME CARE VOLUNTEERS PRE- AND POST-ASSIGNMENT, THE CLIENT CARE CASE MANAGERS, VOLUNTEER COORDINATOR, OR BOTH THAT RULES OF COMMUNICATION BE ARTICULATED FOR AREAS OF OVERLAPPING RESPONSIBILITY AND THAT ALL ALTERATIONS TO THE BUDDY SUPPORT GROUP AND THE RELATIONSHIP BETWEEN CLIENT CARE CASE MANAGERS AND VOLUNTEERS BE CLEARLY SPECIFIED TO THE VOLUNTEERS I t goes without s a y i n g t h a t a l l a l t e r a t i o n s made i n the Buddy/Home Care Program as a r e s u l t o f t h e s e recommendations, need t o be made c l e a r i n t h e i r e n t i r e t y t o a l l who are a f f e c t e d . T h e r e f o r e i t i s recommended: THAT ALL IN-HOUSE STAFF, VOLUNTEERS, CLIENTS, OUTSIDE SERVICE PROVIDERS AND PERTINENT FUNDING  BODIES BE NOTIFIED OF THIS EVALUATION AND THE PROPOSED CHANGES IN THE PROGRAM - AT LEAST VERBALLY AND PERHAPS IN WRITING AS WELL AND THAT PERTINENT FUNDING BODIES CONTINUE AND/OR INCREASE MONIES ALLOTTED TO AIDS VANCOUVER TO FACILITATE THE CONTINUANCE AND THE IMPROVEMENT OF THE BUDDY/HOME CARE PROGRAM ACCORDING TO THE FOREGOING RECOMMENDATIONS 172 SUMMARY AND RECOMMENDATIONS WITH REGARD TO THEORETICAL AND POLICY ISSUES IN PROVIDING HOSPICE/PALLIATIVE CARE FOR PERSONS WITH AIDS The summary of the r e s u l t s of the e v a l u a t i o n of the Buddy/Home Care Program and r e s u l t a n t recommendations complete, i t i s now time t o t u r n t o the summary and recommendations a s s o c i a t e d w i t h t h e t h e o r e t i c a l and p o l i c y i s s u e s encountered while examining the Buddy/Home Care Program, a program e n d e a v o u r i n g t o p r o v i d e h o s p i c e / p a l l i a t i v e care s e r v i c e f o r people with AIDS. T h e o r e t i c a l Issues Encountered As i t may be r e c a l l e d , the examination of a l l f o u r o f t h e PWA S o c i a l Networks a c c o r d i n g t o t h e network c h a r a c t e r i s t i c s o f s i z e and d e n s i t y r e s u l t e d i n t h e r a i s i n g of some key q u e s t i o n s about some of the major t e n e t s or components of t h e h o s p i c e / p a l l i a t i v e c a r e approach. Summaries of f i n d i n g s to do with s i z e and d e n s i t y w i l l be f o l l o w e d by a recommendation r e g a r d i n g f u t u r e r e s e a r c h . S i z e With regard t o s i z e , i t was d i s c o v e r e d t h a t the s o c i a l networks ranged i n s i z e from 12 t o 25. A review of the l i t e r a t u r e r e v e a l e d t h a t network s i z e i s the only network c h a r a c t e r i s t i c p o s i t i v e l y c o r r e l a t e d with a sense of w e l l - b e i n g and h i g h h e a l t h s t a t u s . What i s not c l e a r though, i s whether good h e a l t h i s the cause of l a r g e s o c i a l networks, or whether l a r g e s o c i a l networks cause good h e a l t h . My f i n d i n g s do not he l p t o r e s o l v e t h i s query because the PWA with the l a r g e s t network was the f i r s t of the f o u r to d i e , and the PWA with one of the s m a l l e s t networks was the second. Some of the l i t e r a t u r e - which assumes t h a t network s i z e causes good h e a l t h -a l s o s t a t e s t h a t a f t e r t h e i n v o l v e m e n t of a c e r t a i n number of people, t h e r e i s a d i m i n i s h i n g r a t e of r e t u r n . In other words, th e r e i s a p o i n t at which a d d i t i o n a l persons i n v o l v e d does not i n c r e a s e , and may even decrease h e a l t h s t a t u s . How does one know when the optimal number of people are i n v o l v e d i n one's network, and how does one go about a d j u s t i n g t h i s number when l i f e changes occur, making a d i f f e r e n t number more a p p r o p r i a t e ? The h o s p i c e / p a l l i a t i v e care approach, committed t o a h i g h degree of l i a i s o n and inter-communication between network members, does not s p e c i f y t h e i n v o l v e m e n t o f any p a r t i c u l a r number of i n d i v i d u a l s i n s o c i a l n e t w o r k s . Perhaps i t should: t h i s , i t seems i s one a p p r o p r i a t e arena of f u t u r e r e s e a r c h . As w e l l , i t became c l e a r i n my study t h a t the f o u r PWAs d i d not mention p a r t n e r s or l o v e r s as members of t h e i r n e t w o r k s . T h i s t o o , r e p r e s e n t s a b i t o f a c h a l l e n g e t o t h e h o s p i c e / p a l l i a t i v e c a r e p h i l o s o p h y because as i t has been p o i n t e d out, i n d i v i d u a l s with o t h e r t e r m i n a l i l l n e s s e s who a r e i n r e c e i p t o f 174 h o s p i c e / p a l l i a t i v e care have a primary caregiver who i s often a partner. Therefore, how can, and should the h o s p i c e / p a l l i a t i v e care approach be adapted to accommodate PWAs without primary caregivers? Density Although the ho s p i c e / p a l l i a t i v e care approach l i s t s the kinds of individuals that should be involved i n the i n t e r d i s c i p l i n a r y team, i t does not specify the optimum number of people to be involved i n s o c i a l networks. It does, however, promote, as was mentioned above, very t i g h t l i a i s o n and communication between i n t e r -d i s c i p l i n a r y team members. This c a l l for high density though, may not be i n the best interests of PWA c l i e n t s . This study of the Buddy/Home Care Program revealed very low l e v e l s of de n s i t y i n each of the four s o c i a l networks, which at f i r s t caused me some concern. But according to the inconclusive l i t e r a t u r e on density, i t i s conceivable that the r e l a t i v e lack of contact among members of the four s o c i a l networks i s a good thing. The whole question of d e n s i t y as i t p e r t a i n s to hos p i c e / p a l l i a t i v e care, i t seems, represents yet another important topic for future research. S p e c i f i c a l l y to do with volunteers, since i t i s they who have been focused upon i n my study, i t has become clear that they are the only members of two of the four s o c i a l networks examined, who had contact with Family Members and Friends. This i s s i g n i f i c a n t because these two groups were otherwise almost completely i s o l a t e d from other sectors of the s o c i a l networks. In addition to t h i s study making a number of recommendations to do with volunteers i n t h e i r relationships with c l i e n t s , and with AIDS Vancouver's Clien t Care Case Managers, i t has also l e f t me with a number of questions about how volunteers should relate, what kinds of contact they should have with other members of the s o c i a l networks. In other words, what, according to the h o s p i c e / p a l l i a t i v e care approach, i s the intended r o l e of volunteers on the i n t e r d i s c i p l i n a r y team? Recommendations Therefore i t i s recommended: THAT THESE QUESTIONS RELATED TO NETWORK SIZE AND DENSITY BE CONSIDERED AS IMPORTANT PRIORITIES FOR FUTURE RESEARCH Policy Issues Encountered N a t u r a l l y , the r e s u l t s of s t u d i e s designed to examine the above-mentioned t h e o r e t i c a l questions and i s s u e s , w i l l need to be taken i n t o c o n s i d e r a t i o n by p o l i c y makers, funding bodies, and service providers. Other i s s u e s that w i l l need to be addressed as revealed by t h i s paper include the dual but separate h o s p i c e / p a l l i a t i v e care systems that have evolved for people with and people without AIDS; and the a l l but non-existent federal and p r o v i n c i a l p o l i c y and funding with regard to h o s p i c e / p a l l i a t i v e care i n general, and i n s p e c i f i c t o people with AIDS. Therefore i t i s recommended, as was recommended by the Expert Working Group on P a l l i a t i v e Care f o r PWAs: - t h a t governments o f a l l l e v e l s - f e d e r a l , p r o v i n c i a l and m u n i c i p a l - a c t i v e l y promote the development of p a l l i a t i v e care s e r v i c e s i n t h e i r j u r i s d i c t i o n s so t h a t a l l persons with AIDS and t h e i r f a m i l i e s and f r i e n d s have a c c e s s t o p a l l i a t i v e c a r e s e r v i c e s from t h e time o f d i a g n o s i s through death and bereavement - t h a t p r o v i n c i a l governments make new and a d d i t i o n a l funds a v a i l a b l e immediately t o h e a l t h c a r e p r o v i d e r groups and o t h e r a p p r o p r i a t e o r g a n i z a t i o n s t o expand or develop p a l l i a t i v e care s e r v i c e s designed t o meet the needs of...[PWAs] and t h e i r f a m i l i e s - t h a t h e a l t h c a r e p r o v i d e r g r o u p s , w i t h t h e f i n a n c i a l and c o n s u l t a t i v e support of p r o v i n c i a l governments, d e v e l o p an i n t e g r a t e d and comprehensive network of p a l l i a t i v e c a r e . . . - t h a t , with the f i n a n c i a l support of...governments/ the p l a n n i n g , c o o r d i n a t i o n and d e l i v e r y of AIDS care be i n i t i a t e d i n each community or r e g i o n of Canada - t h a t w h i l e p a l l i a t i v e c a r e i n i t i a t i v e s a r e expanding across Canada, s p e c i a l p i l o t p r o j e c t s must be undertaken t o demonstrate and ev a l u a t e the e f f i c a c y and e f f e c t i v e n e s s o f t h e p r o p o s e d model... [ d e s c r i b e d i n C h a p t e r One]...and o t h e r a l t e r n a t i v e models of h e a l t h care f o r persons with AIDS...Such p r o j e c t s may i n c l u d e an economic e v a l u a t i o n of these models - t h a t r e s e a r c h funding bodies i n Canada make a commitment t o the study of AIDS care by becoming a c t i v e s o l i c i t o r s and supporters of r e s e a r c h t o improve the care of persons with AIDS - t h a t H e a l t h and Welfare Canada p r o v i d e funding and c o n s u l t a t i v e s u p p o r t f o r t h e e d u c a t i o n o f a l l c a r e g i v e r s . . . - t h a t a n a t i o n a l p o l i c y f o r t h e c a r e of...[PWAs]...be developed by H e a l t h and Welfare Canada t o ensure a comprehensive approach t o AIDS 177 c a r e t h a t i s c o n s i s t e n t w i t h t h e C a n a d i a n p r i n c i p l e o f u n i v e r s a l a c c e s s t o h e a l t h c a r e (1987, pp. 6 - 8 ) SUMMARY Thi s e v a l u a t i o n of the Buddy/Home Care Program has had f i v e o b j e c t i v e s : (1) t o c e l e b r a t e and make improvements t o the f u n c t i o n i n g of the Buddy/Home Care Program; (2) t o ensure present and secure a d d i t i o n a l l e v e l s of funding f o r the Buddy/Home Care Program; (3) t o d e m o n s t r a t e t h e i n v a l u a b l e c o n t r i b u t i o n s made by t h e Buddy/Home Care Program t o the o v e r a l l p a l l i a t i v e care f o r persons with AIDS; (4) t o i l l u s t r a t e the need f o r the development o f an i n t e g r a t e d h o s p i c e / p a l l i a t i v e c a r e s e r v i c e composed of a v a r i e t y of s e r v i c e p r o v i d e r s ; and (5) t o draw a t t e n t i o n t o the f a c t t h a t such an i n t e g r a t e d s e r v i c e does not c u r r e n t l y e x i s t because of a l a c k of f e d e r a l and p r o v i n c i a l government p o l i c y and funding. 178 REFERENCES "AIDS Could Bankrupt H e a l t h Care System Says P r o j e c t D i r e c t o r " (November 4, 1985). The Vancouver Sun. "AIDS F u n d i n g Gets B o o s t : AIDS Group Seeks B e t t e r F a c i l i t i e s " ( J u l y 4, 1985). The West Ender. B a r r e t t , Tom (June 11, 1987) . AIDS comment no s l u r , Dueck says. The Vancouver Sun. Berry, Steve (September 12, 1986). AIDS t o l l jumps but V i c t o r i a won't. The P r o v i n c e . B.C. H o s p i c e / P a l l i a t i v e Care A s s o c i a t i o n . (September 11, 1986). P a l l i a t i v e Care i n B r i t i s h Columbia. B r i e f t o the M i n i s t r y of H e a l t h . "B.C. P l a n s AIDS H o s p i c e " (November 26, 1986). The  Vancouver Sun. Buckingham, Robert (1983). The complete hospice guide. New York: Harper and Row, P u b l i s h e r s . C a l l w o o d , June (1986) . Twelve weeks i n s p r i n g . Toronto: L e s t e r & Orpen Dennys L i m i t e d . C a m p b e l l , Gordon (March 18, 1988). R e p o r t t o C i t y  C o u n c i l : Re: Mayor's Task F o r c e on AIDS. (unpublished). C a p i l a n o C o l l e g e (1983) . The V a n c o u v e r H o s p i c e  Program. Vancouver: Capilano C o l l e g e . C i t y Manager (February 20, 1987). C i t y Manager's Report  t o C i t y C o u n c i l ' s S o c i a l S e r v i c e s and H e a l t h  Committee: Re: AIDS. (unpublished). Cohen, Kenneth (1979). H o s p i c e : p r e s c r i p t i o n f o r  t e r m i n a l c a r e . Germantown: Aspen Systems C o r p o r a t i o n . " D e a l i n g With AIDS" ( E d i t o r i a l - September 10, 1986). Vancouver, Sun. D i v i s i o n of C o n t i n u i n g E d u c a t i o n i n the H e a l t h Sciences, The U n i v e r s i t y of B r i t i s h Columbia (1989) . T h i r d  A n n u a l AIDS C o n f e r e n c e : An I n t e r d i s c i p l i n a r y  C o n t i n u i n g E d u c a t i o n f o r H e a l t h P r o f e s s i o n a l s , 179 E d u c a t o r s , and C o u n s e l l o r s . V a n c o u v e r : John Fl a n n e r y . D i v i s i o n of C o n t i n u i n g E d u c a t i o n i n the H e a l t h Sciences, The U n i v e r s i t y of B r i t i s h Columbia (1989). T h i r d  A n n u a l AIDS C o n f e r e n c e : An I n t e r d i s c i p l i n a r y  C o n t i n u i n g E d u c a t i o n f o r H e a l t h P r o f e s s i o n a l s ,  Educators, and C o u n s e l l o r s . Vancouver: Dr. Michael Rekart. Doyle, John (June 13, 1985) . AIDS o f f i c e set to open. The West Ender. Draaisma, M u r i e l (December 23, 1985). AIDS hospice seeks funds. The Vancouver Sun. " E d i t o r i a l " (May 6, 1987). Vancouver Sun. Evans, Robert. (1983). H e a l t h care i n Canada: p a t t e r n s o f f u n d i n g and r e g u l a t i o n . J o u r n a l o f H e a l t h  P o l i t i c s . P o l i c y , and Law, 8.(1), pp. 1-43. Expert Working Group on P a l l i a t i v e Care f o r Persons With AIDS (1987). C a r i n g T o g e t h e r . Ottawa: F e d e r a l Centre f o r AIDS, H e a l t h and Welfare Canada. F o u r n i e r , Suzanne (March 13, 1987). AIDS hos p i c e delay rapped. The P r o v i n c e . F o u r n i e r , Suzanne (May 4, 1987). Dueck under f i r e on AIDS. The P r o v i n c e . "Funding Request Turned Down" (September 11, 198 6). The  West Ender. G a l l o , F r a n k (1981). The e f f e c t s o f s o c i a l s u p p o r t networks on the h e a l t h of the e l d e r l y . S o c i a l Work  i n H e a l t h Care, 8.(2). pp. 65-74. Glas e r , Barney (1978) . T h e o r e t i c a l s e n s i t i v i t y (pp. 55-82). M i l l V a l l e y : S o c i o l o g y P r e s s . G l a s e r , Barney, & Strauss, Anselm (1967) . The d i s c o v e r y  of grounded th e o r y . Chicago: A l d i n e P u b l i s h e r s . H e a l t h S e r v i c e s D i r e c t o r a t e , H e a l t h S e r v i c e s and Promotion Branch (1981). Report of the Working  Group on S p e c i a l S e r v i c e s i n H o s p i t a l s - G u i d e l i n e s  f o r E s t a b l i s h i n g Standards f o r S p e c i a l S e r v i c e s i n  H o s p i t a l s : P a l l i a t i v e Care S e r v i c e s i n H o s p i t a l s . Ottawa: Department of N a t i o n a l H e a l t h and Welfare. 180 Hedemann, Elma G. (1987) . P a l l i a t i v e care i n Canada: 1986. J o u r n a l of P a l l i a t i v e Care. 5 (3) . H i r s c h , Barton J . (1980). N a t u r a l support systems and coping with major l i f e changes. American J o u r n a l of  Community Psychology. 8.(2), pp. 159-172. House, James S. & Kahn, Robert L. (1985). Measures and concepts of s o c i a l support. In Sheldon Cohen and S. Leonard Syme (Ed.) S o c i a l support and h e a l t h (pp. 83-108). New York: Academic Press, Inc. I s r a e l , Barbara A. (1982) . S o c i a l networks and h e a l t h s t a t u s : l i n k i n g t h e o r y , r e s e a r c h , and p r a c t i c e . P a t i e n t C o u n s e l l i n g and Heal t h Education. 4.(2), pp. 65-79. K r u e c k l , Judy (1987). E v a l u a t i o n of Support S e r v i c e s  AIDS Vancouver. Vancouver: unpublished. Lau, C e c i l i a (1988). AIDS Vancouver Support S e r v i c e s .  Needs A s s e s s m e n t : Summer 1988. Va n c o u v e r : unpublished Lee, J e f f (May 9, 1988). 5-year p l a n c a l l e d f o r t o f i g h t AIDS. The Vancouver Sun. M a r i n a k i s , D e n n i s (September 15, 1986). Governments l a s h e d over AIDS funds. The Vancouver Sun. " M i n i s t e r Announces Formation of AIDS Committee" (August 19, 1983). The Free P r e s s . Mullens, Anne (September 9, 1986). Vancouver AIDS agency d e n i e d p r o v i n c i a l f u n d s . The Van c o u v e r Sun. Mullens, Anne (October 16, 1986). AIDS hospice p l a n r e j e c t e d by p r o v i n c e . The Vancouver Sun. M u l l e n s , Anne (October 22, 1986) . AIDS group g e t s $30,000 g r a n t . The Vancouver Sun. Mullens, Anne (June 4, 1989) . The Face of AIDS: Mamoth Conference Looks at G l o b a l P i c t u r e . The Vancouver Sun. Myers, David (October, 1986). Bob Tiv e y speaks out: C h r i s t i a n deputy m i n i s t e r b l o c k s AIDS f u n d i n g . Angles. Myers, David (November 1986) . Hospice funding denied. Angles. 181 N a g l e , Matt (May, 1989). AIDS h o s p i c e dawning i n Vancouver. Angles. P a t t o n , M i c h a e l Q. (1980) . Q u a l i t a t i v e e v a l u a t i o n  methods. B e v e r l y H i l l s : Sage P u b l i c a t i o n s . P e a r l i n , L e o n a r d I. (1985). S o c i a l s t r u c t u r e and p r o c e s s e s o f s u p p o r t . In Sh e l d o n Cohen and S. Leonard Syme (Ed.) S o c i a l support and h e a l t h (pp. 83-108). New York: Academic Press, Inc. P e r s o n s With AIDS C o a l i t i o n (undated) . Aims and  O b j e c t i v e s . Vancouver: unpublished. P h i l l i p s , Susan L. (1981). Network c h a r a c t e r i s t i c s r e l a t e d t o the w e l l - b e i n g o f normals: a comparative base. S c h i z o p h r e n i a B u l l e t i n , 2 ( 1 ) / PP« 117-124. P o l i c y , Planning, and Information Branch, Department of N a t i o n a l H e a l t h and W e l f a r e (September 1982) . P a l l i a t i v e Care i n Canada. The P r o v i n c e of B r i t i s h Columbia M i n i s t r y of Health, The N a t i o n a l Department of Hea l t h and Welfare, D i v i s i o n of C o n t i n u i n g Education i n the H e a l t h Sciences, The U n i v e r s i t y o f B r i t i s h Columbia, and S t . P a u l ' s H o s p i t a l (1988). Second I n t e r n a t i o n a l AIDS Symposium f o r Hea l t h P r o f e s s i o n a l s . Vancouver: J . Bloom. The P r o v i n c e of B r i t i s h Columbia M i n i s t r y of Health, The N a t i o n a l Department of H e a l t h and Welfare, D i v i s i o n of C o n t i n u i n g E d u c a t i o n i n the Hea l t h Sciences, The U n i v e r s i t y o f B r i t i s h Columbia, and S t . P a u l ' s H o s p i t a l (1988) . Second I n t e r n a t i o n a l AIDS Symposium f o r H e a l t h P r o f e s s i o n a l s . V a n c o u v e r : Irene Goldstone. Rekart, Michael (1989) . AIDS update: q u a r t e r l y r e p o r t . Summer. Vancouver: D i v i s i o n of S e x u a l l y Transmitted Disease C o n t r o l . R i c h a r d s o n , D a v i d (1982 - 1984) . Va n c o u v e r H o s p i c e  P r o j e c t : Report. S t a n d i n g Committee on N a t i o n a l H e a l t h and W e l f a r e (1986). Minutes of Proceedings and Evidence of the Standing Committee on N a t i o n a l H e a l t h and Welfare:  F i f t h Report on AIDS i n Canada• Ottawa: He a l t h and Welfare Canada. 182 S t r a u s s , Anselm L. (1987). Q u a l i t a t i v e a n a l y s i s f o r  s o c i a l s c i e n t i s t s . Cambridge: Cambridge U n i v e r s i t y P r e s s . "$39 M i l l i o n P l e d g e d A g a i n s t AIDS" (May 2, 1986). The Vancouver Sun. T i v e y , Robert (October 1986). Canadian AIDS s o c i e t y seeks n a t i o n a l f u n d i n g . A n g l e s . Van Loon, R.J. (1978). From s h a r e d c o s t t o b l o c k f u n d i n g and beyond: t h e p o l i t i c s of h e a l t h i n s u r a n c e i n Canada. J o u r n a l o f H e a l t h P o l i t i c s , P o l i c y , and  Law, 3 ( 3 ) , pp. 454-477. Watt, Tom (February 1, 1990). Vacant h o t e l t o become home f o r AIDS p a t i e n t s . The P r o v i n c e . Wong, C h r i s (June 9, 1988). Ottawa's b o o s t t o d i s e a s e f u n d i n g c a l l e d o v e r d u e by AIDS V a n c o u v e r . The  Vancouver Sun. Zimmerman, Jac k M. (1986). H o s p i c e : complete c a r e f o r t h e t e r m i n a l l y i l l . B a l t i m o r e : U r b a n and Schwarzenberg. 183 t h i s l e t t e r b e f o r e c a l l i n g you to f i n d out whether or not you would l i k e t o take p a r t . I f you have any questions, p l e a s e f e e l f r e e t o ask me at t h a t time. In a d d i t i o n , remember t h a t you are f r e e t o say "yes", "no", or to change your mind about being i n v o l v e d i n t h i s r e s e a r c h at any t i m e . We a r e l o o k i n g f o r p e o p l e who want t o p a r t i c i p a t e ! A l s o , be assured as I have been assured, t h a t whether or not you do decide to p a r t i c i p a t e w i l l i n no way a f f e c t the c u r r e n t r e l a t i o n s h i p you have with AIDS Vancouver. Regardless of what you decide, thank you f o r being w i l l i n g t o c o n s i d e r being a p a r t of t h i s study! S i n c e r e l y yours, A l i s o n Leaney MSW Student Researcher at AIDS Vancouver 185 Appendix B A Sample of the Consent for Contacting Members of Support System Form BENEATH THE APPLICABLE POSITIONS BELOW PLEASE CLEARLY PRINT THE NAMES, ADDRESSES, AND PHONE NUMBERS OF PEOPLE IN YOUR SUPPORT NETWORK THAT YOU GIVE ME PERMISSION TO APPROACH TO BE INTERVIEWED FOR THE PURPOSES OF THIS RESEARCH ON THE "BUDDY/HOME CARE PROGRAM" OFFERED BY AIDS VANCOUVER. Buddy(ies): Home Care Volunteers: Other Agency Personnel: - doctor(s) -- community health nurse (s) -- r e s i d e n t i a l coordinator(s) -- s o c i a l worker (s) -- therapist(s) -- other - please specify, Partner(s): Family Member(s): Friend(s): By signing your name below, you are agreeing that the researcher, A l i s o n Leaney, consulted you about who she can and cannot contact as you have indicated above, and that you are p e r m i t t i n g her to contact the individuals you have l i s t e d . Signature Date 186 Appendix C A Sample "Topics of Interest" Interview Guide THERE ARE NO RIGHT OR WRONG ANSWERS! I 7AM INTERESTED IN YOUR PERCEPTIONS AND EXPERIENCES! 1. People who are s u p p o r t i v e / h e l p f u l to (name of person with AIDS) and what they do 2. Nature of your r e l a t i o n s h i p with (buddies, and/or home care volunteers, and other people i n the person with AIDS' support system) 3. Nature and degree of your int e r a c t i o n with AIDS Vancouver Buddy/Home Care s t a f f 4. O v e r a l l strengths and/or weaknesses of the Buddy/Home Care Program. Likes? Dislikes? Other comments about the Buddy/Home Care Program Additional comments 187 Appendix D A Sample of An Interview Guide Including Probes for Researcher's Use With PWAs People who are supportive/helpful to you and what they do: Probes: - who helps i n the way of buddies, case managers, l o v e r s , family members, f r i e n d s , other agency people? - how do they help? - what do they do? - when do they do i t ? - where do they do i t ? - what i s the f i t l i k e between a l l of these people? Nature of your relationship with (your buddy or home care volunteer): Probes: - assuming c o n f l i c t i s natural, how does i t get handled? - are there things the buddy/home care person cannot or w i l l not do? - how do you get along? not get along? - are your needs met? unmet? - s a t i s f i e d with what buddy/home care person does? - concerns? - compliments? - expectations? - questions? Nature and degree of your interaction with AIDS Vancouver Buddy/Home Care s t a f f Probes: - needs met? unmet? - f e e l supported? unsupported? - process f o r asking f o r , g e t t i n g , having, and terminating a buddy/home care person? - who i s case manager? - how available i s case manager? - questions? O v e r a l l strengths and/or weaknesses of the Buddy/Home Care Program. Likes? Dislikes? Probes: - suggestions? - ideas? - feelings about receiving the service? Other comments about the Buddy/Home Care Program 188 A d d i t i o n a l comments Demographics: - how long r e c e i v i n g h e l p from AIDS Vancouver - when diagnosed? - how f e e l i n g ? - age? - course of i l l n e s s ? 189 

Cite

Citation Scheme:

        

Citations by CSL (citeproc-js)

Usage Statistics

Share

Embed

Customize your widget with the following options, then copy and paste the code below into the HTML of your page to embed this item in your website.
                        
                            <div id="ubcOpenCollectionsWidgetDisplay">
                            <script id="ubcOpenCollectionsWidget"
                            src="{[{embed.src}]}"
                            data-item="{[{embed.item}]}"
                            data-collection="{[{embed.collection}]}"
                            data-metadata="{[{embed.showMetadata}]}"
                            data-width="{[{embed.width}]}"
                            async >
                            </script>
                            </div>
                        
                    
IIIF logo Our image viewer uses the IIIF 2.0 standard. To load this item in other compatible viewers, use this url:
https://iiif.library.ubc.ca/presentation/dsp.831.1-0098001/manifest

Comment

Related Items