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Social support available to those who test antibody positive for the human immunodeficiency virus Alexus, Lillian Marie 1989

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SOCIAL SUPPORT AVAILABLE TO THOSE WHO TEST ANTIBODY POSITIVE FOR THE HUMAN IMMUNODEFICIENCY VIRUS  By  LILLIAN MARIE ALEXUS B.S.N., U n i v e r s i t y of V i c t o r i a , 1987  THESIS SUBMITTED IN PARTIAL FULFILLMENT THE  REQUIREMENTS FOR THE DEGREE OF MASTER OF SCIENCE IN NURSING  in  THE  FACULTY OF GRADUATE STUDIES The  School of Nursing  We accept t h i s t h e s i s as conforming to the r e q u i r e d  standard  THE UNIVERSITY OF BRITISH COLUMBIA A p r i l 1989 (c^) L i l l i a n Marie Alexus, 1989  In  presenting  degree freely  at  this  the  available  copying  of  department publication  of  in  partial  fulfilment  of  the  University  of  British  Columbia,  I  agree  for  this or  thesis  reference  thesis by  this  for  his thesis  and  scholarly  or for  her  of  The University of British Columbia Vancouver, Canada  DE-6  (2/88)  I further  purposes  gain  shall  that  agree  may  representatives.  financial  permission.  Department  study.  requirements  be  It not  that  the  be  Library  an  advanced  shall  permission for  granted  is  for  by  understood allowed  the  make  extensive  head  that  without  it  of  copying my  my or  written  Abstract An estimated 50,000 Canadians  have been exposed to  the Human Immunodeficiency V i r u s (HIV), the v i r u s v h i c h causes Acquired Immune D e f i c i e n c y Syndrome (AIDS).  Some  of these i n d i v i d u a l s have been t e s t e d f o r the presence of HIV a n t i b o d i e s .  For those whose antibody s t a t u s has  been confirmed s e r o p o s i t i v e , there are many concerns. One area of concern p e r t a i n s to the s o c i a l  support  a v a i l a b l e to them. The purpose  of t h i s study was to i d e n t i f y and  compare the s o c i a l support a v a i l a b l e to two groups. group comprised  One  homosexual males, aged 20 to 49 y e a r s ,  who had t e s t e d antibody p o s i t i v e  f o r HIV.  The other  group included homosexual males, aged 20 to 49 y e a r s , who had not been t e s t e d  f o r HIV a n t i b o d i e s and whose  s t a t u s was, t h e r e f o r e , unknown. A convenience  sample i n c l u d e d 10 known s e r o p o s i t i v e  i n d i v i d u a l s and 13 persons who had not been t e s t e d . P a r t i c i p a n t s from each group completed  the Norbeck  S o c i a l Support Q u e s t i o n n a i r e to i n d i c a t e s o c i a l a v a i l a b l e to them.  support  Network and f u n c t i o n a l p r o p e r t i e s of  s o c i a l support were s i m i l a r  f o r both groups.  Loss of  network members o c c u r r e d more f r e q u e n t l y f o r those who tested s e r o p o s i t i v e .  T h e r e f o r e , one could conclude  that  i n d i v i d u a l s who t e s t HIV antibody p o s i t i v e may r e q u i r e more s o c i a l support than those whose antibody s t a t u s i s  not  known.  analyzed.  Demographic data were a l s o c o l l e c t e d and One d i f f e r e n c e noted was that those who had  not been tested p a r t i c i p a t e d more f r e q u e n t l y i n r e l i g i o u s a c t i v i t i e s than those i n the s e r o p o s i t i v e group. The research nursing  f i n d i n g s were d i s c u s s e d  i n r e l a t i o n t o each  question.  of the f i n d i n g s f o r  Implications  p r a c t i c e , e d u c a t i o n , and f u r t h e r research  then suggested.  were  iv  Table of Contents page Abstract  ii  Table of Contents  iv  L i s t of Tables  vi  L i s t of F i g u r e s . . .  ....vii  Acknowledgements CHAPTER ONE:  viii  Introduction  Background to the Problem Problem Statement.. Purpose of the Study Conceptual Framework Summary Research Questions D e f i n i t i o n of Terms Assumptions Limitations . S i g n i f i c a n c e of the Study Organization of Thesis CHAPTER TWO:  ••••  1 6 7 7 10 10 11 11 12 13 15  Review of Selected L i t e r a t u r e  Introduction. . S o c i a l Support HIV Antibody S t a t u s . . Summary CHAPTER THREE:  Methodology  16 16 25 32 '  Introduction Research Design Sample and S e t t i n g Data C o l l e c t i o n Procedures Instruments Data A n a l y s i s P r o t e c t i o n of Human Rights  33 33 33 34 35 38 39  CHAPTER FOUR: P r e s e n t a t i o n and D i s c u s s i o n of Results Introduction C h a r a c t e r i s t i c s of the Sample  40 40  V  page Demographic C h a r a c t e r i s t i c s 41 Age 41 M a r i t a l Status ...44 Educational Level 46 E t h n i c Background 48 R e l i g i o u s Preference and P a r t i c i p a t i o n 48 F i n d i n g s and D i s c u s s i o n 52 Research Question #1: S o c i a l Support A v a i l a b l e to HIV Antibody P o s i t i v e Homosexual Males Aged 20 to 49 Years, Who L i v e i n the Community 53 Research Question #2: S o c i a l Support A v a i l a b l e to Homosexual Males Aged 20 to 49 Years, Who L i v e i n the Community and Whose HIV Antibody Status are Not Known 54 Research Question #3: S o c i a l Network Members the HIV Antibody P o s i t i v e Subjects Inform of Their S e r o p o s i t i v e Status 58 Research Question #4: D i f f e r e n c e s i n S o c i a l Support A v a i l a b l e to These Two Groups 60 Research Question #5: D i f f e r e n c e s i n the S o c i a l Network Members No Longer A v a i l a b l e to Subjects i n Each Group....61 CHAPTER FIVE:  Summary, C o n c l u s i o n s , and I m p l i c a t i o n s  Introduction 66 Summary 66 Cone 1 us ions 69 Implications Nursing P r a c t i c e . . 70 Nursing E d u c a t i o n 74 Nursing Research 76 References 80 Appendices Appendix A: The Norbeck S o c i a l Support Questionnaire (NSSQ) 89 Appendix B: N o t i c e of the Study 98 Appendix C: L e t t e r s to the Agencies 100 Appendix D: Covering L e t t e r f o r the NSSQ...105 Appendix E: Request Form 107  vi  List  of Tables  Table I  II  III  IV  V  VI  VII  VIII  IX  page Ages of Research Subjects From the Known P o s i t i v e and Status Not Known Groups  43  M a r i t a l Status of Research Subjects From the Known P o s i t i v e and Status Not Known Groups  45  Education L e v e l of Research Subjects From the Known P o s i t i v e and Status Not Known Groups  47  R e l i g i o u s P r e f e r e n c e s of Research Subjects From the Known P o s i t i v e and Status Not Known Groups  49  P a r t i c i p a t i o n i n R e l i g i o u s A c t i v i t i e s by Research Subjects From the Known P o s i t i v e and Status Not Known Groups  50  Number of S o c i a l Network Members L i s t e d by Research Subjects From the Known P o s i t i v e and Status Not Known Groups  55  Number of S o c i a l Network Members L i s t e d by Groups from S w i t z e r l a n d , Taiwan, Egypt, USA, as w e l l as The Known P o s i t i v e and Status Not Known Groups 57 Members of the Known P o s i t i v e Group's S o c i a l Network Who Know of the Subject's S e r o p o s i t i v e Status  59  The Known P o s i t i v e and the Status Not Known Groups' Loss of S o c i a l Network Members 64  vii List  of  Figures  Figure 1  page Four C a t e g o r i e s  of H y p o t h e s e s  9  viii Acknowledgements I would l i k e to thank the members of my t h e s i s committee, Ray Thompson ( c h a i r ) and Gary Johnson f o r t h e i r guidance throughout t h i s study. This study would not have been p o s s i b l e without the cooperation of i n d i v i d u a l s who agreed to have my packets d i s t r i b u t e d through t h e i r a g e n c i e s . I would l i k e to give s p e c i a l thanks to Ken Mann a t AIDS Vancouver and Wayne Cook and J u d i t h E n g l i s h at AIDS Vancouver I s l a n d . I would a l s o l i k e to thank the r e s e a r c h s u b j e c t s who took the time to pick up, complete, and mail back the questionnaires. F i n a l l y , I am forever g r a t e f u l to my f a m i l y and f r i e n d s who have supported me throughout many endeavors.  1 CHAPTER  ONE  Introduction Background to the  Problem  Acquired Immune D e f i c i e n c y Syndrome (AIDS) was first  recognized i n 1981  ( G a l l o & Montagnier,  1988).  In  Canada, 2,305 cases had been r e p o r t e d as of February 1989.  A l l ten provinces as w e l l as the t e r r i t o r i e s  have reported cases.  At present, B r i t i s h  r e p o r t s the h i g h e s t i n c i d e n c e , 158.1 population  6, now  Columbia  per 1,000,000  (Federal Center f o r AIDS, 1989).  According  to Schobel (1988), these reported cases r e p r e s e n t only the t i p of the i c e b e r g .  The Royal S o c i e t y of Canada  (1988) r e p o r t s estimates of as many as 50,000 who  Canadians  have not been diagnosed as having AIDS but are  c a r r i e r s of the human immunodeficiency  virus  (HIV).  Some persons have taken the enzyme l i n k e d  immuno-  sorbent assay (ELISA) t e s t to c o n f i r m t h e i r HIV antibody status  (Goldblum  & Seymour, 1987).  Those who  test  s e r o p o s i t i v e are challenged by a v a r i e t y of changes i n their  lives.  One  example may  be an a l t e r a t i o n  i n the  a v a i l a b i l i t y of s o c i a l support. Kahn (1979) proposes that s o c i a l support be d e f i n e d as " i n t e r p e r s o n a l t r a n s a c t i o n s that i n c l u d e one or more of the f o l l o w i n g :  the e x p r e s s i o n of p o s i t i v e a f f e c t of  one person toward another, the a f f i r m a t i o n or endorsement of another person's behaviours, p e r c e p t i o n s ,  2  or expressed views, and the g i v i n g of symbolic or m a t e r i a l a i d to another"  (Kahn, 1979, p.85).  These  three elements -- a f f e c t , a f f i r m a t i o n , and a i d -c o n s t i t u t e f u n c t i o n a l support a v a i l a b l e t o the individual. When a person l e a r n s he i s HIV antibody he may withdraw from o t h e r s .  Conversely,  positive,  I f he shares  t h i s i n f o r m a t i o n , i n d i v i d u a l s may withdraw from him because they lack knowledge and a r e a f r a i d . circumstance, the s e r o p o s i t i v e person's  In e i t h e r  existing  social  network and the s o c i a l support a v a i l a b l e to him may be reduced. Information about HIV has been p u b l i s h e d i n the h e a l t h care l i t e r a t u r e .  Some a r t i c l e s d i s c u s s modes of  HIV t r a n s m i s s i o n (Barnard, 1987; Bennett,  1986; Brown &  Brown, 1988; D a n i e l s , 1987; Schobel, 1988; Turner, Fawal, Long, & R i v e r s , 1988) and HIV antibody  testing  (Buckingham, 1987; DePaul & Liberman, 1986; Goldblum & Seymour, 1987; G r e i g , 1987; McCombie, 1986). much of the e x i s t i n g l i t e r a t u r e persons with AIDS.  However,  i s i n reference to  D i s c u s s i o n s o f t e n address  clinical  m a n i f e s t a t i o n s of AIDS ( M i l l e r , 1987b; S c h l e t i n g e r , 1986; Staquet, Hemmer, & Baert, 1986; Turner & Williamson, 1986), e t h i c a l 1987;  i s s u e s r e l a t e d t o AIDS (Kerr,  Kim & P e r f e c t , 1988; M i t c h e l l & Smith, 1987;  Winston, 1987) or p s y c h o s o c i a l and p s y c h o l o g i c a l  3  considerations  (Coates, Temoshok, & Mandel, 1984;  & Weisman, 1986;  Deuchar, 1984;  Feinblum, 1986;  1986;  Morin & Batchelor,  1984;  1986;  Stapleton,  L i t t l e has  those who  1986).  Cohen  Salisbury,  lack the AIDS d i a g n o s i s  Kinnier,  1986;  Schoen,  been w r i t t e n  but are  HIV  about  antibody  positive. I n f e c t i o n with HIV  i s followed  by a l a t e n t p e r i o d  i n which the person u s u a l l y remains a n t i b o d y p o s i t i v e but asymptomatic.  The  asymptomatic p e r i o d may  weeks, months, or years. the average i n c u b a t i o n e i g h t years or longer.  According to Fineberg  period  last.  Not  (1988),  f o r f u l l - b l o w n AIDS may  I n d i v i d u a l s who  s e r o p o s i t i v e cannot know how period w i l l  last  long t h e i r  test incubation  knowing i f or when he may  develop  AIDS i s s t r e s s f u l f o r the s e r o p o s i t i v e  individual.  l i k e others under s t r e s s , needs s o c i a l  support.  Panic and  fear are the  known presence of HIV  be  He,  i n e v i t a b l e r e s u l t s of a  infection.  Such f e e l i n g s  experienced by f a m i l i e s , f r i e n d s , f u n e r a l d i r e c t o r s , p r i s o n guards, h o s p i t a l s t a f f members, and be compounded by f e a r s of contagion These fears are o f t e n d i r e c t e d at known HIV  (Fineberg,  i n d i v i d u a l s who  As a r e s u l t , these i n d i v i d u a l s may  by those who  of support.  may  1988).  antibody p o s i t i v e , even though they do  have AIDS. deserted  employers  are not  become  would otherwise have been a source  Furthermore, one  could  question  the q u a l i t y  of p r o f e s s i o n a l s e r v i c e s i n d i v i d u a l s r e c e i v e i f workers, for example, tend to avoid them. The HIV antibody p o s i t i v e  individual  homosexual male, aged 20 to 49 years AIDS, 1989), who  lives  is typically a  ( F e d e r a l Center f o r  In a "gay" community.  Because of  h i s c l o s e p r o x i m i t y to t h i s community, he w i l l  likely  witness f r i e n d s ' and/or l o v e r ( s ) ' b a t t l e s with AIDS. During t h i s s t r u g g l e , the s e r o p o s i t i v e person  may  witness h i s AIDS counterpart cope with the l o s s of or a l t e r a t i o n s i n p h y s i c a l stamina, body image, mental c l a r i t y , p r i v a c y , s e l f - s u f f i c i e n c y , p e r s o n a l competency, income, and employment; f e a r s of death and dying, the unknown, l o n e l i n e s s , abandonment, d i s f i g u r e m e n t , d i s a b i l i t y , l o s i n g s e l f - c o n t r o l , s u f f e r i n g and p a i n , and dependency; and changing r e l a t i o n s h i p s with f r i e n d s , coworkers,  f a m i l y , and  lover(s).  i n d i v i d u a l s with AIDS who  He may  also  witness  lose jobs i n s p i t e of adequate  h e a l t h , are f o r c e d from accommodation by roommates and/or l a n d l o r d s , are denied s c h o o l admission, and ( f o r those with v i s i b l e Kaposi's sarcoma l e s i o n s ) are r e j e c t e d from r e s t a u r a n t s (Baumgartner, S c h i e n t i n g e r , 1986). The s e r o p o s i t i v e  1985;  individual  may  f e e l that these consequences are a punishment f o r past behaviors.  Subsequently,  homophobic f e e l i n g s may  negative  internalized  s u r f a c e (Harowski,  1988).  t h i s happens, the i n d i v i d u a l w i l l need s o c i a l  If  support.  5  "Loss of support occurs with g r e a t e s t through death of a loved one" Peplau  impact  ( H e l l e r , 1979).  (1982) add that s o c i a l d e f i c i t  Rook and  resulting  from  l o s s can compound an i n d i v i d u a l ' s f e e l i n g of l o n e l i n e s s . The s e r o p o s i t i v e person may  have a l r e a d y l o s t and  continue to lose s i g n i f i c a n t others who AIDS.  Needless  may  have c o n t r a c t e d  to say, the s o c i a l support needs of  anyone i n c u r r i n g such l o s s e s w i l l be g r e a t . The  homosexual p o p u l a t i o n has been a s t i g m a t i z e d  group (Altman,  1986;  Harowski, 1988).  Social ostracism  of persons who  t e s t HIV antibody p o s i t i v e may  be  compounded by negative a t t i t u d e s toward t h i s high r i s k group.  Those who  are known s e r o p o s i t i v e w i l l l i k e l y  more s t i g m a t i z e d because they are both gay and seropositive.  test  As a r e s u l t , many homosexual males w i l l  r e v e a l t h e i r sexual o r i e n t a t i o n and/or t h e i r antibody s t a t u s , i f at a l l ,  HIV  to o n l y a s e l e c t few.  This  i s s i g n i f i c a n t because s o c i a l network members, who t y p i c a l l y be a source of support, may  would  not n e c e s s a r i l y be  a p p r o p r i a t e resources i f they do not know the i s HIV antibody  be  individual  positive.  The HIV antibody p o s i t i v e person may need to c o n f i d e i n someone.  f e e l a strong  Revealing h i s seropositive  s t a t u s to f a m i l y members, f o r example, can cause him to experience extreme s e l f - g u i l t , e s p e c i a l l y i f h i s f a m i l y l e a r n s s i m u l t a n e o u s l y that t h e i r son i s both gay  and  6 t e s t s HIV antibody p o s i t i v e .  T h i s "double blow" can  cause much anguish w i t h i n the f a m i l y .  In a d d i t i o n , the  i n d i v i d u a l r i s k s r e j e c t i o n when informing h i s f a m i l y . Therefore, a v a i l a b l e as w e l l as p o t e n t i a l s o c i a l  support  may be j e o p a r d i z e d . Problem Statement Many questions p e r t a i n i n g t o HIV antibody p o s i t i v e persons remain unanswered.  One area of concern  s o c i a l support a v a i l a b l e to those who t e s t  i s the  seropositive.  L i t t l e r e s e a r c h has been done to examine e x i s t i n g support a v a i l a b l e to HIV antibody p o s i t i v e  social  individuals  (Buckingham, 1987; M i l l e r , 1987b; M i l l e r , Green, & McCreaner, 1986). literature  i s based  Furthermore,  much of the c u r r e n t  on r e p o r t s of i n d i v i d u a l experiences  rather than on sound r e s e a r c h s t u d i e s . The  l a r g e r the s o c i a l network, the more e f f e c t i v e  that support system  i s l i k e l y to be (Namir, 1986).  HIV antibody p o s i t i v e person's e x i s t i n g s o c i a l system may break down.  The  support  For example, many of h i s f r i e n d s  and/or l o v e r ( s ) may have d i e d from AIDS. weakened as they b a t t l e o p p o r t u n i s t i c  Others may be  infections.  Perhaps f a m i l y members l i v e hundreds of miles away or have disowned t h e i r son because of h i s homosexuality. For these and other reasons, the i n d i v i d u a l may be l e f t to  s t r u g g l e without adequate s o c i a l  support.  7 Purposes One purpose  of the Study  of t h i s study was t o i d e n t i f y and  compare the s o c i a l support a v a i l a b l e t o two groups of homosexual males, aged 20 to 49 y e a r s .  One group's  members had been t e s t e d and confirmed HIV antibody positive.  Research  s u b j e c t s from the other group had  not been t e s t e d and t h e i r HIV a n t i b o d y s t a t u s was, t h e r e f o r e , not known.  Another  purpose  of t h i s study was  to i d e n t i f y and compare support network members who are no longer a v a i l a b l e t o i n d i v i d u a l s  i n each group.  In  a d d i t i o n , f o r those r e s e a r c h s u b j e c t s who had been t e s t e d and confirmed HIV antibody p o s i t i v e , t h i s  study  examined which members of t h e i r support network they chose t o inform of t h e i r s e r o p o s i t i v e  status.  Conceptual Framework The conceptual framework and the q u e s t i o n n a i r e used f o r t h i s study were based  on the ideas of Robert Kahn.  Kahn (1979) i d e n t i f i e s the concept of convoy, the v e h i c l e through which s o c i a l support  i s provided.  This  concept suggests t h a t an i n d i v i d u a l can be viewed as being "surrounded  by a s e t of s i g n i f i c a n t other people  to whom that person i s r e l a t e d by g i v i n g or r e c e i v i n g of s o c i a l support" (Kahn, 1979, p. 84). At any p o i n t i n time, an i n d i v i d u a l ' s convoy i n c l u d e s a s e t of persons on whom he r e l i e s for  support.  f o r support, and those who r e l y on him  Based on h i s concept of convoy, Kahn (1979) s t a t e s s e v e r a l hypotheses.  S p e c i f i c a l l y , Kahn (1979) b e l i e v e s  that the adequacy of an h i s well-being,  i n d i v i d u a l ' s support determines  performance i n major s o c i a l r o l e s , and  success i n managing l i f e - c h a n g e s and a l s o hypothesizes that formal  transitions.  He  p r o p e r t i e s of a person's  convoy determine the adequacy of s o c i a l support that person gives as w e l l as r e c e i v e s . demographic and formal  He  believes  s i t u a t i o n a l v a r i a b l e s determine  p r o p e r t i e s of a person's convoy.  hypotheses d e f i n e a s t r a i g h t f o r w a r d  These  causal  that the three  sequence,  from demographic c h a r a c t e r i s t i c s to the s t r u c t u r e of  the  convoy, from the convoy s t r u c t u r e to the q u a l i t a t i v e and q u a n t i t a t i v e adequacy of s o c i a l support, and  from the  adequacy of s o c i a l support to i n d i v i d u a l well-being lack of i t .  In a d d i t i o n , Kahn (1979) hypothesizes that  s o c i a l support has  a b u f f e r i n g e f f e c t and  r e l a t i o n s h i p between acute s t r e s s e s and well-being.  or  These four c a t e g o r i e s  i l l u s t r a t e d as f o l l o w s  moderates the  the i n d i v i d u a l ' s  of hypotheses can  (Kahn, 1979):  be  9  Figure 1.  Kahn's Four Categories of Hypotheses  Note. Adapted From Kahn, R.(1979). Aging and support. In M.W.  Riley  social  (Ed.) Aging from B i r t h to Death  (p. 85). Boulder, Colorado: Westview  Press.  Summary Kahn's (1979) d i s c u s s i o n of the concept of convoy provides the conceptual framework f o r t h i s study. convoy i n c l u d e s a s e t of persons who a f f e c t toward  express  This  positive  one another; a f f i r m b e h a v i o r s ,  p e r c e p t i o n s , or expressed views; and give a i d to one another.  According to Kahn (1979), an i n d i v i d u a l gives  and r e c e i v e s s o c i a l support v i a h i s convoy. study, s o c i a l support a v a i l a b l e to two t e s t e d antibody p o s i t i v e f o r HIV and antibody s t a t u s was  not known, was  In t h i s  groups, those  who  those whose HIV  explored.  In  a d d i t i o n , s o c i a l network members no longer a v a i l a b l e to each group were i d e n t i f i e d .  For those who  tested  s e r o p o s i t i v e , s o c i a l network members they informed of t h e i r s e r o p o s i t i v e s t a t u s were Research 1.  identified.  Questions  What c o n s t i t u t e s the s o c i a l support a v a i l a b l e  to HIV antibody p o s i t i v e homosexual males aged 20 to 49 years, who 2.  live  In the community?  What c o n s t i t u t e s the s o c i a l support  to homosexual males aged 20 to 49 y e a r s , who  available live  i n the  community and whose HIV antibody s t a t u s i s not known? 3.  Is there a d i f f e r e n c e i n the s o c i a l  a v a i l a b l e to these two 4.  For those who  support  groups? t e s t HIV a n t i b o d y p o s i t i v e , which  s o c i a l network members do they inform of t h e i r  seropositive 5.  status?  Is there a d i f f e r e n c e i n the s o c i a l network  members no longer a v a i l a b l e to persons i n each group? D e f i n i t i o n of Terms 1.  Gay:  a sexual p r o p e n s i t y f o r persons of the  same sex. 2.  HIV antibody  p o s i t i v e or s e r o p o s i t i v e :  in this  study, a homosexual male aged 20 t o 49 years who has t e s t e d s e r o p o s i t i v e f o r a n t i b o d i e s to HIV. 3.  S o c i a l Support:  where one expresses  interpersonal transactions  p o s i t i v e a f f e c t toward another,  a f f i r m a t i o n of another person's b e h a v i o r s , or expressed  views, and/or gives symbolic  a i d to another.  perceptions, or m a t e r i a l  These t r a n s a c t i o n s c o n s t i t u t e the  f u n c t i o n a l components of s o c i a l support 4. S o c i a l Network P r o p e r t i e s :  (Kahn, 1979).  i n d i v i d u a l s who  comprise the s u b j e c t ' s s o c i a l network, t h e i r r e l a t i o n s h i p with the i n d i v i d u a l , frequency and  of c o n t a c t ,  the length of time the s u b j e c t has known each person  (Norbeck, Lindsey, 5.  & Carrieri,  The Community:  1981).  place of r e s i d e n c e o u t s i d e an  i n s t i t u t i o n such as a h o s p i t a l , extended care or  facility,  hospice. Assumptions For the purposes of t h i s study,  assumptions were made:  the f o l l o w i n g  12  1.  The  responses  of the r e s e a r c h s u b j e c t s r e f l e c t  t h e i r true f e e l i n g s . 2.  The Norbeck S o c i a l Support  Questionnaire  (NSSQ)  r e t a i n s i t s v a l i d i t y with the groups under study. Limitations This study had the f o l l o w i n g l i m i t a t i o n s : 1.  The  s e l e c t e d sample, by d e s i g n , included only  homosexual males aged 20 to 49 y e a r s .  Therefore,  others  i n high r i s k groups, such as haemophiliacs, b i s e x u a l s , intravenous drug abusers, and H a i t i a n s , as w e l l as males and  females 2.  HIV  represented.  Research s u b j e c t s i n c l u d e d those who  are known  antibody p o s i t i v e and those whose antibody s t a t u s i s  not known. not  i n other age groups are not  I n d i v i d u a l s who  have t e s t e d seronegative  are  represented. 3.  living  Subjects chosen f o r t h i s study were i n d i v i d u a l s i n the community.  to persons 4.  F i n d i n g s are not g e n e r a l i z a b l e  residing in institutions.  Because t h i s study d i d not employ a random  sample, f i n d i n g s are g e n e r a l i z a b l e o n l y to the s u b j e c t s who  participated 5.  i n the  study.  Research s u b j e c t s i n c l u d e d those who  had  access  to and read the newspapers, n e w s l e t t e r s , or posters a d v e r t i s i n g t h i s study.  Other r e s e a r c h s u b j e c t s  have heard about the study through  may  employees or  v o l u n t e e r s at AIDS Vancouver, AIDS Vancouver I s l a n d , the  West End  Community C e n t e r ,  University subjects Island  of B r i t i s h  likely  or the  Therefore,  lived  lover  results  generalizability 6.  There  Vancouver  Island  Columbia  live  due  this  i n these  live  homosexual  areas  c o m m u n i t y may because  be  lives  shunned  location.  communities  on  mainland  British  i n the  of  live.  have  easier  support  than  other For  southern  Homosexual  may  access  to  homosexual  example,  a  in predominantly heterosexual and  avoided  of h i s s e x u a l o r i e n t a t i o n .  individuals  Vancouver  limited  i n other communities.  m a l e who  of  s t u d y have  lower  the  result,  Columbia.  to geographical  the  a  of B r i t i s h  established  and  As  southern areas  mainland  more e x t e n s i v e s o c i a l  m a l e s who  the  i n the  L e s b i a n s of  (UBC).  w h e r e many h o m o s e x u a l m a l e s  m a l e s who and  Columbia  from  are  or Gays and  s t u d y may  not  by  residents  Therefore,  be  representative  of  g e n e r a l homosexual male p o p u l a t i o n . 7.  Each person  style.  T h o s e who  outgoing result, social  than the  h i s own  participated  those  who  d i d not  than,  Related  in this  uncommunicative,  history  of  r e s e a r c h has  HIV  and of the  has  focused  and  s t u d y may  participate. have  f o r example,  Significance The  personality  r e s e a r c h s u b j e c t s may  support  depressed,  has  those  more who  As  coping be  more  a  available become  withdrawn. Study  been v i r u l e n t primarily  on  and  short.  those  who  have  developed  AIDS r a t h e r than those who  positive.  Nonetheless, people who  t e s t HIV  test  antibody  seropositive  o f t e n share the same concerns and needs as those with AIDS.  One  need i s f o r s o c i a l support.  This research  w i l l add to the l i m i t e d body of knowledge addressing t h i s need. In B r i t i s h Columbia, Department (VHD) abilities  the Vancouver Health  i s studying changes i n s e l f - c a r e  and d e f i c i t s of AIDS p a t i e n t s who  are at home.  Although community h e a l t h agencies have c o n t a c t with AIDS p a t i e n t s , s e r o p o s i t i v e i n d i v i d u a l s a l s o their services.  utilize  For example, s e r o p o s i t i v e persons  may  r e q u i r e community h e a l t h s e r v i c e s f o r p h y s i c a l ailments r e l a t e d to HIV  infection.  r e s e a r c h e r ' s study may knowledge gleaned  T h e r e f o r e , f i n d i n g s from  this  be a v a l u a b l e a d d i t i o n to the  from the VHD  study.  According to Bloom (1982), i n c r e a s i n g  evidence  p o i n t s to the c e n t r a l r o l e s o c i a l support plays i n a l l e v i a t i n g the impact individual.  of i l l n e s s on the s t r i c k e n  The nurse must recognize and assess the  s o c i a l support a v a i l a b l e to the s e r o p o s i t i v e Then, she w i l l plan and  person.  implement s t r a t e g i e s to meet h i s  s u p p o r t i v e needs as w e l l as h i s p h y s i c a l needs. study w i l l o f f e r  This  f i n d i n g s which w i l l a s s i s t nurses with  this goal. This study i s t i m e l y .  There  is substantial  literature AIDS.  about s o c i a l support and v a r i o u s aspects of  However, because of the l a r g e numbers of  HIV  antibody p o s i t i v e persons, more work i s needed to assess these people's a v a i l a b l e s o c i a l support. t h i s nature w i l l a s s i s t  nurses  Knowledge of  In p l a n n i n g a p p r o p r i a t e  p a t i e n t s e r v i c e and e d u c a t i o n a l programs. O r g a n i z a t i o n of T h e s i s This thesis  i s comprised  of f i v e c h a p t e r s .  Background to the problem, conceptual framework, purpose of the study, and research questions were presented i n chapter one. literature  In chapter two,  i s presented.  a review of s e l e c t e d  Research  methodology,  i n c l u d i n g a d e s c r i p t i o n of the r e s e a r c h d e s i g n , data collection ethical  instruments, data c o l l e c t i o n  c o n s i d e r a t i o n s , and s t a t i s t i c a l  i n data a n a l y s i s ,  i s addressed  procedures, procedures  i n chapter t h r e e .  used In  chapter f o u r , a d e s c r i p t i o n of the sample, research f i n d i n g s , and d i s c u s s i o n of r e s u l t s are presented.  The  summary, c o n c l u s i o n s , i m p l i c a t i o n s f o r n u r s i n g p r a c t i c e , and recommendations f o r f u r t h e r r e s e a r c h are i n chapter  five.  presented  CHAPTER  TWO  Review of the L i t e r a t u r e Introduction The  purpose of t h i s chapter  i s to review s e l e c t e d  l i t e r a t u r e r e l e v a n t to t h i s study. two  v a r i a b l e s , s o c i a l support  First,  and  T h i s study addressed HIV  antibody  the concept of s o c i a l support,  status.  according  various t h e o r i s t s , w i l l be addressed.  to  Then, s t u d i e s  that have examined consequences of the presence or lack of s o c i a l support v a r i a b l e HIV  w i l l be reviewed.  antibody  a diagnosis  addressing  antibody  p o s i t i v e or of  of AIDS or AIDS Related  w i l l be addressed.  the  s t a t u s , l i t e r a t u r e p e r t a i n i n g to  the consequences of t e s t i n g HIV having  To address  In a d d i t i o n , r e l e v a n t  psychosocial  i s s u e s w i l l be  Complex  (ARC)  studies  reviewed.  S o c i a l Support S o c i a l support which may  has  i n f l u e n c e an  h e a l t h maintenance, and (Berkman & Syme, 1979;  been i d e n t i f i e d as a v a r i a b l e i n d i v i d u a l ' s h e a l t h outcomes, a b i l i t y to cope with Bloom, 1982;  1974;  C a s s e l , 1976;  1982;  Murawski, Penman, & Schmitt,  Froland,  1978;  and  r e l a t i o n s h i p may and  H e l l e r , 1979;  Weiss, 1974).  give one  an  Bruhn, 1965;  Kahn, 1979; 1978; Also, a  Caplan,  Maxwell,  Pilisuk & supportive  increased sense of c o n t r o l  mastery of a problem, increase one's  ( T i e t j e n , 1980), and  illness  reduce one's a n x i e t y  self-esteem level  (Henderson, 1977). well-being  of the  The  impact s o c i a l support  i n d i v i d u a l cannot be  Weiss (1974) was  one  of the f i r s t  recipient. to and  These p e r c e p t i o n s  valued  nurtured,  the  t h e o r i s t s to He  describes  as p e r c e i v e d by  include f e e l i n g  the  attached  by others; being s o c i a l l y i n t e g r a t e d ,  and able to r e l y on o t h e r s ; and r e c e i v i n g  guidance from o t h e r s .  In a d d i t i o n , Weiss (1974)  i d e n t i f i e s f u n c t i o n s of s o c i a l support 1.  on  overemphasized.  p u b l i s h h i s ideas about s o c i a l support. c h a r a c t e r i s t i c s of s o c i a l support  has  Intimacy counteracts  as f o l l o w s :  the sense of  emotional  i s o l a t i o n or l o n e l i n e s s . 2.  Social  i n t e g r a t i o n i n v o l v e s s h a r i n g mutual  concerns. 3.  Opportunity  f o r nurturant  behaviour provides a  sense of purpose. 4.  Reassurance of worth i n c r e a s e s  self-esteem.  5.  By a s s u r i n g the a v a i l a b i l i t y of resources, a  sense of a n x i e t y and v u l n e r a b i l i t y are decreased. Weiss (1974) b e l i e v e s that i n d i v i d u a l s who members of a s o c i a l network experience He a l s o b e l i e v e s s o c i a l support  severe  g i v e s one  worth and absence of s o c i a l support  are  not distress.  a sense of  o f t e n leads to a  low  self-regard. Caplan (1974) views s o c i a l support different perspective.  from a  He b e l i e v e s support  slightly  systems  b u f f e r the i n d i v i d u a l .  One  c o l l e c t s and  stores  information about cues i n the o u t s i d e world. t h i s i n f o r m a t i o n can be a source of guidance d i r e c t i o n as i t helps one  i n t e r p r e t cues.  systems b u f f e r the i n d i v i d u a l because  In f u t u r e , and  Support  they a l s o a c t as a  refuge or sanctuary where the i n d i v i d u a l can r e s t recuperate.  Caplan b e l i e v e s t h a t , because  and  of these  b u f f e r i n g e f f e c t s , support systems augment a person's strengths to f a c i l i t a t e mastery of h i s  environment.  These support systems are enduring p a t t e r n s of continuous or i n t e r m i t t e n t t i e s .  As a r e s u l t , they p l a y  a s i g n i f i c a n t part i n m a i n t a i n i n g the p s y c h o l o g i c a l and physical  i n t e g r i t y of the i n d i v i d u a l over time.  Caplan  (1974) i d e n t i f i e s the f o l l o w i n g  elements  c h a r a c t e r i s t i c of s o c i a l support: 1.  S i g n i f i c a n t others a s s i s t the i n d i v i d u a l to  m o b i l i z e p s y c h o l o g i c a l resources and master  emotional  burdens. 2.  S i g n i f i c a n t others share the  individual's  tasks. 3.  S i g n i f i c a n t others provide the person with  m a t e r i a l a i d or guidance  to a s s i s t him  i n handling a  situation. Many people access these s i g n i f i c a n t others by themselves parenthood,  involving  i n a range of r e l a t i o n s h i p s such as marriage, or other forms of l o v i n g and  intimate t i e s ;  f r i e n d s h i p s , r e l a t i o n s h i p s with co-workers, membership in r e l i g i o u s organizations, s o c i a l , c u l t u r a l ,  political,  and r e c r e a t i o n a l a s s o c i a t i o n s ; and acquaintances neighbors and/or shop-keepers.  R e l a t i o n s h i p s may  r e s u l t from the person seeking help from caregivers In  (Caplan, 1974)  1979  with  such as  also  professional  nurses.  Caplan published a comprehensive d e f i n i t i o n  of  s o c i a l support and s p e c i f i e d the f o l l o w i n g v a r i a t i o n s  of  social 1.  support: O b j e c t i v e t a n g i b l e support - behaviour,  measured by an o u t s i d e observer, intended to provide the person with t a n g i b l e resources t h a t w i l l mental or p h y s i c a l w e l l - b e i n g . support  benefit his  Objective tangible  i n v o l v e s h e l p i n g behaviours  such as g i v i n g  f i n a n c i a l a s s i s t a n c e , running errands, l o o k i n g a f t e r a c h i l d , or c l e a n i n g a house. 2.  O b j e c t i v e p s y c h o l o g i c a l support  - behaviour,  measured by an o u t s i d e observer, intended to provide the person with v a l u e s , a t t i t u d e s , b e l i e f s , and and to induce a f f e c t i v e s t a t e s t h a t w i l l being.  O b j e c t i v e p s y c h o l o g i c a l support  t h a t are expected  promote w e l l involves actions  to produce a more p o s i t i v e  s t a t e i n the i n d i v i d u a l .  perceptions  These a c t i o n s may  affective include, for  example, the communication of i n f o r m a t i o n about an illness,  a v a i l a b l e care, and treatment,  as w e l l as the  e x p r e s s i o n of s p e c i f i c behaviors such as touching,  l i s t e n i n g , d i s c l o s i n g , and s m i l i n g . 3.  S u b j e c t i v e t a n g i b l e support  - the i n d i v i d u a l ' s  p e r c e p t i o n that s p e c i f i c behaviour i s intended provide him with t a n g i b l e resources  to  that w i l l benefit  h i s mental or p h y s i c a l w e l l - b e i n g . 4.  S u b j e c t i v e p s y c h o l o g i c a l support  - the  i n d i v i d u a l ' s p e r c e p t i o n that s p e c i f i c behaviour i s intended and  to provide him with v a l u e s , a t t i t u d e s , b e l i e f s ,  perceptions and  induce a f f e c t i v e s t a t e s that w i l l  promote h i s w e l l - b e i n g . Cobb (1979) i d e n t i f i e s s o c i a l support important  of s o c i a l ,  support.  He views s o c i a l support  i n s t r u m e n t a l , a c t i v e , and  information given to an b e l i e v e he and  as the most  p r i m a r i l y as  i n d i v i d u a l which leads him  i s cared f o r , loved, esteemed, and  Instrumental  support  mutual  i n v o l v e s maximizing  i n d i v i d u a l p a r t i c i p a t i o n and autonomy by o f f e r i n g guidance and/or c o u n s e l l i n g .  The  r e s u l t , cope more e f f e c t i v e l y and  to  valued,  belongs to a network of communication and  obligation.  material  him  person w i l l , as a adapt a c c o r d i n g l y .  Cobb (1979) d e s c r i b e s a c t i v e support  as  ^mothering'.  cautions t h a t , when done u n n e c e s s a r i l y , a c t i v e supporting may  f o s t e r dependency.  Material  support  Includes the p r o v i s i o n of goods and s e r v i c e s . Instrumental support  may  support,  a c t i v e support,  and  material  i n v o l v e or imply s o c i a l support  (Cobb,  He  21 1979). Hirsch network.  (1981) addresses the concept of a s o c i a l  He b e l i e v e s s o c i a l support Is provided by  other people and a r i s e s w i t h i n the context of interpersonal relationships.  A s o c i a l network can be  conceived of as a p e r s o n a l community t h a t embeds and supports c r i t i c a l  social ties.  b e n e f i t the i n d i v i d u a l  A s o c i a l network  will  i f i t r e f l e c t s and supports a  r e p e r t o i r e of s a t i s f a c t o r y s o c i a l  i d e n t i t i e s and, over  time, provides o p p o r t u n i t i e s f o r f u r t h e r development and enrichment.  There w i l l be a good f i t between the person  and h i s s o c i a l network r e l a t i v e to h i s developmental tasks.  This goodness of f i t helps the i n d i v i d u a l to be  i n t e g r a t e d with and t o p a r t i c i p a t e a c t i v e l y i n a v i a b l e segment of c u l t u r e and s o c i e t y .  At any p o i n t i n time  there i s a mutual exchange of s o c i a l support between the I n d i v i d u a l and s i g n i f i c a n t others or members of h i s personal community. Bloom (1982) d i s c u s s e s emotional, environmental and i n f o r m a t i o n a l support.  Emotional support r e f e r s to  behaviour which assures the i n d i v i d u a l he i s loved and valued as a person, r e g a r d l e s s of h i s achievements. Environmental support r e f e r s to r e s o u r c e s a t the i n d i v i d u a l ' s d i s p o s a l such as someone from whom he can borrow money, get a r i d e to an appointment, a s s i s t a n c e with housework.  or o b t a i n  Information i s a type of  support o f t e n provided by c a s u a l acquaintances or others such as h e a l t h care p r o f e s s i o n a l s Researchers  (Bloom, 1982).  have s t u d i e d the impact  of s o c i a l support.  of the  presence  For example, high l e v e l s of s o c i a l  support a c c e l e r a t e recovery from some i l l n e s s e s such as cardiac f a i l u r e  (Chambers & R e i s e r , 1953), t u b e r c u l o s i s  (Holmes, J o f f e & Ketcham, 1961), s u r g i c a l o p e r a t i o n (Egbert, B a t t i t , Welch & B a r t l e t t , 1964), asthma (deAraujo, van A r s d e l , Holmes, & Dudley, psychosomatic  illness  ( B e r l e , Pinsky, Wolf, & Wolf,  1952), and v a r i o u s p s y c h i a t r i c Caplan, 1974; and Lundwall  1973),  Hermalin, 1976;  illnesses  (Brown,  Lambert, 1973).  1959;  Baekeland  (1975) and Haynes & Sackett (1974)  summarized 41 a r t i c l e s r e g a r d i n g p a t i e n t compliance.  In  34 of these a r t i c l e s , they found an a s s o c i a t i o n between the presence of s o c i a l support and compliance. & Feldman (1973) demonstrated that deaths were reduced b i r t h d a y s and  i n f i v e separate s t u d i e s  i n the s i x months preceding  increased i n the succeeding s i x months.  They hypothesized t h a t , i f t h i s were a s o c i a l effect,  Phillips  i t should be more s t r i k i n g  d i s t i n g u i s h e d people.  support  f o r the most  They found t h i s hypothesis to be  confirmed. Researchers  have s t u d i e d s t r e s s / s t r a i n  r e l a t i o n s h i p s and s o c i a l support.  For example, French,  Rodgers, & Cobb (1974) found an a s s o c i a t i o n between r o l e  ambiguity and the l e v e l o f serum C o r t i s o l , of p h y s i o l o g i c a l s t r a i n .  an i n d i c a t o r  This a s s o c i a t i o n was  e l i m i n a t e d when r e l a t i o n s h i p s between s u p e r v i s o r and subordinates  were s u p p o r t i v e .  2,000 men i n 23 occupations.  Pinneau  When occupation  d e s c r i p t o r s were held constant, supportive  men who  and other  reported  r e l a t i o n s with s u p e r v i s o r s and co-workers  a l s o reported and  (1975) s t u d i e d  l e s s s t r e s s a t work.  Support from spouse  family showed a s i m i l a r e f f e c t on work-generated  stresses.  Aneshensel & Stone (1982) t e s t e d the  " b u f f e r i n g " model of s o c i a l support.  Among 1,000 a d u l t s  s t u d i e d i n Los Angeles, c l o s e r e l a t i o n s h i p s and perceived  support  symptomatology.  were n e g a t i v e l y r e l a t e d to depressive A l s o , the research  f i n d i n g s supported  the c o r o l l a r y t h a t a lack of s o c i a l support to the c r e a t i o n of depressive  contributes  symptoms.  Gore (1978) s t u d i e d the e f f e c t of s o c i a l support i n moderating the h e a l t h consequences of unemployment. companies, one i n a l a r g e c i t y and the other  i n a small  r u r a l community, shut down and a l l employees l o s t jobs.  Terminees were s t u d i e d i n f i v e s t a g e s :  a n t i c i p a t i o n stage,  the t e r m i n a t i o n  their  the  stage, the  readjustment stage, and then one and two years job l o s s .  Two  following  There was a s i g n i f i c a n t drop i n mean  cholesterol levels  from the f i r s t  to the l a s t stage f o r  a l l men except the unemployed who d i d not perceive  themselves  as supported.  For i n d i v i d u a l s  unemployed  a f t e r t e r m i n a t i o n , c h o l e s t e r o l l e v e l s of the peaked at t h i s time. the unemployed who  unsupported  Conversely, c h o l e s t e r o l l e v e l s for  were supported remained  stable.  Muhlenkamp & Sayles (1986) s t u d i e d p e r c e i v e d s o c i a l support, s e l f - e s t e e m , and p o s i t i v e h e a l t h p r a c t i c e s among a s e l e c t group of a d u l t s .  They found that  self-esteem and s o c i a l support are p o s i t i v e of  life-style.  Furthermore,  both  indicators  s o c i a l support was  found to  have a p o s i t i v e i n f l u e n c e on h e a l t h p r a c t i c e s because of its  d i r e c t e f f e c t on s e l f - e s t e e m . Many r e s e a r c h e r s have s t u d i e d the impact  of  s o c i a l support on the i n d i v i d u a l .  N u c k o l l s , C a s s e l , & Kaplan women.  of a lack  For example,  (1972) s t u d i e d pregnant  T h e i r data showed that 91% of those with  numerous l i f e  changes and low s o c i a l support  complications r e l a t e d to t h e i r pregnancy. study, Raphael  (1977) found t h a t those w i t h  had  In another little  s o c i a l support were more l i k e l y to r e p o r t poor h e a l t h 13 months a f t e r bereavement than were those with more adequate s o c i a l support.  Brown, B h r o l c h a i n , & H a r r i s  (1975) and Brown, Davidson,  & Harris  (1977) found a  r e l a t i o n s h i p between lack of s o c i a l support and presence of d e p r e s s i o n .  the  In a d d i t i o n , M o r r i s , Udry, &  Chase (1973) found that mothers with unwanted pregnancies and  little  s o c i a l support were l i k e l y to  have smaller babies than mothers with wanted and more s o c i a l support.  One  pregnancies  c o u l d q u e s t i o n whether, i n  t h i s study, the smaller b i r t h weights  were a r e s u l t of  the pregnancy not being wanted or because the mother had little  s o c i a l support.  Chen and Cobb (1960) found  an  a s s o c i a t i o n between lack of s o c i a l support with the onset of t u b e r c u l o s i s .  Caplan  (1971) d i s c u s s e s many  authors* views of a s i m i l a r a s s o c i a t i o n between a lack of s o c i a l support and coronary a r t e r y d i s e a s e . example, Parks, Benjamin, & F i t z g e r a l d excess of coronary deaths among men l o s t t h e i r wives.  For  (1969) found  who  had  I t i s worthy to note t h a t  an  recently this  a s s o c i a t i o n assumes these wives were p r o v i d e r s of s o c i a l support f o r t h e i r  husbands. HIV Antibody Status  L i t t l e has been w r i t t e n about a v a i l a b l e to those who  social  t e s t HIV a n t i b o d y  support positive.  However, p s y c h o s o c i a l I m p l i c a t i o n s of p r o c l a i m i n g one's homosexuality ARC,  or of being diagnosed as having AIDS or  have been addressed  i n the l i t e r a t u r e .  Most  s t u d i e s have focused on those with AIDS or ARC researchers have s t u d i e d those who  and  lack the AIDS or  few ARC  d i a g n o s i s but t e s t HIV antibody p o s i t i v e . According to S t a p l e t o n (1986), people u s u a l l y  offer  a s s i s t a n c e and support to I n d i v i d u a l s a f f l i c t e d with a terminal I l l n e s s .  However, persons who  test  HIV  antibody p o s i t i v e may Siegel  be avoided or r e j e c t e d by o t h e r s .  (1986) s t a t e s t h a t persons with AIDS do  not  r e c e i v e the support, empathy, and a s s i s t a n c e g e n e r a l l y shown to others who  are i l l .  T h i s may  be because  causes AIDS which i s a s s o c i a t e d with disapproved sexual behaviour  or intravenous drug abuse.  a d d i t i o n , there i s o f t e n fear of c o n t a g i o n .  HIV of  In Thus,  r e l a t i o n s h i p s between the i n d i v i d u a l and  h i s sexual  partners or l o v e r s may  I f intimate  become s t r a i n e d .  partners d i s t a n c e themselves, abandoned and Feinblum  the person may  isolated. (1986) s t a t e s t h a t the person with AIDS  f e e l s extremely  isolated.  have been an a c t i v e ,  For example, t h i s person  work because of i l l n e s s , he may  feel  I f no longer able to i s o l a t e d when there  are no longer as many people around him The  experiences  may  i n v o l v e d i n d i v i d u a l with a l a r g e  network of f r i e n d s and c o l l e a g u e s .  1986).  feel  s e r o p o s i t i v e person may i f he becomes i l l  (Feinblum,  have s i m i l a r  and needs to take  time  away from work. S a l i s b u r y (1986) b e l i e v e s the stigma a s s o c i a t e d with AIDS has r e s u l t e d patient.  i n severe  i s o l a t i o n of the AIDS  For example, Cohen and Weisman (1986) b e l i e v e  that some are d i s c r i m i n a t e d a g a i n s t because they are a s s o c i a t e d with groups considered a t high r i s k f o r c o n t r a c t i n g AIDS.  There i s outspoken fear and  hostility  from people who Bryant, 1986;  fear homosexuals (Dupree & Margo,  Schoen, 1986).  about mandatory t e s t i n g and t e s t HIV  1988;  These f e a r s provoke ideas quarantine f o r those  antibody p o s i t i v e .  Such s t r a t e g i e s to  the spread of HIV  may  compound the  of a l i e n a t i o n and  expendability  who control  individual's feelings  as w e l l as  fear  of  s e g r e g a t i o n and i s o l a t i o n . Miller  (1987b) i d e n t i f i e s p s y c h o l o g i c a l  f a c i n g those who  t e s t HIV  that u n c e r t a i n t y  may  this  antibody p o s i t i v e .  He  states  be the most d i f f i c u l t aspect f o r  i n d i v i d u a l to manage.  The  a l s o experience emotional and such as a n x i e t y ,  adjustments  seropositive  behavioral  anger, d e s p a i r ,  fear,  person  shock  may  reactions  guilt,  withdrawal, s e l f - d e n i g r a t i o n , d e p r e s s i o n , obsessive s t a t e s , and the  thoughts of, or attempted, s u i c i d e .  necessary p s y c h o l o g i c a l  needs information, Several  guidance, and  services.  Kinnier  s e r v i c e s as a necessary s u p p o r t i v e measure  M i l l e r , Green, & McCreaner  range of groups who requesting  need f o r  (1986) recommends  for AIDS v i c t i m s , pre-AIDS v i c t i m s , and well".  individual  s o c i a l support.  authors have i d e n t i f i e d the  patient counseling counseling  adjustments, the  To make  HIV  may  "the  worried  (1986) i d e n t i f y a  need c o u n s e l i n g :  antibody t e s t i n g , those who  those have t e s t e d  s e r o p o s i t i v e and  are asymptomatic, those who  have t e s t e d  s e r o p o s i t i v e and  have symptoms, those with AIDS or  ARC,  and  sexual  partners,  c l o s e f a m i l y members, and f r i e n d s  of those i n the preceding Miller  (1987a) a l s o b e l i e v e s i n d i v i d u a l s should  receive counseling antibodies. aim  categories.  before  and a f t e r being  This counseling  t e s t e d f o r HIV  has two aims.  The f i r s t  i s to educate people about safe sex p r a c t i c e s to  c o n t r o l the spread of HIV. psychological morbidity  The second aim i s to prevent  by o f f e r i n g s o c i a l support.  If  a person i s found to be HIV antibody p o s i t i v e or has symptoms of HIV i n f e c t i o n , he may i n i t i a l l y shock, a n x i e t y , depression, such as that provided a v a i l a b l e to cushion vulnerable  time.  or d e s p a i r .  by counseling  experience  S o c i a l support,  s e r v i c e s , must be  the person a t t h i s  highly  S o c i a l support must a l s o be a v a i l a b l e  throughout the p e r i o d of adjustment.  Partners  f a m i l y members, themselves a source of s o c i a l w i l l a l s o have concerns and t h e r e f o r e appropriate  counseling.  and/or support,  require  Because of the p r o g r e s s i o n and  c h r o n i c nature of the presence of HIV, c o u n s e l i n g necessary means of p r o v i d i n g on-going s o c i a l  isa  support.  Newman, S l r l e s , & Williamson (1988) d i s c u s s the nurse's r o l e i n addressing emotional c o n s i d e r a t i o n s  the p s y c h o l o g i c a l and  f o r the HIV-infected  employee.  I n i t i a l l y , the antibody p o s i t i v e worker may express fear and  g u i l t about having p o s s i b l y exposed h i s family,  f r i e n d s , or sexual  partners  to the v i r u s .  At t h i s time,  he needs s o c i a l support  and  information.  L a t e r , he  express concerns about impending i l l n e s s . a l s o needs s o c i a l support  may  T h i s worker  and assurance t h a t , f o r  example, a bout of the f l u i s not  i n d i c a t i v e of AIDS  (Newman, et a l . , 1988). Goulden, Todd, Hay,  & Dykes (1984) recognize  f r i e n d s are often the most s u p p o r t i v e AIDS.  These f r i e n d s may  l o s s of one  f r i e n d when they  the same d i s e a s e . support  have not  become s t r a i n e d and i n d i v i d u a l s who  f i n d another i s dying  t e s t HIV  Mann.  antibody  were once a source  of  of s o c i a l  positive  may  Furthermore,  of s o c i a l support  as a r e s u l t of  o p p o r t u n i s t i c i n f e c t i o n s , ARC,  aspects  f i n i s h e d mourning the  e v e n t u a l l y exhausted.  themselves become i l l  One  of p a t i e n t s with  As a r e s u l t , t h i s source  f o r those who  that  may  developing  or AIDS.  of the f i r s t s t u d i e s to address p s y c h o s o c i a l of AIDS was  The  done i n 1984  by Reed, Wise, and  purpose of t h i s study was  members' a t t i t u d e s regarding AIDS.  to assess The  staff  e n t i r e nursing  s t a f f of a 650-bed t e r t i a r y care h o s p i t a l i n the States were given a q u e s t i o n n a i r e . responded.  However, only  United 18%  Within t h i s small group of respondents, the  fear of c o n t r a c t i n g AIDS was  evident.  The  researchers  f e l t t h a t , In a d d i t i o n to the low response r a t e , many gaps In the knowledge of AIDS r e s t r i c t e d findings.  the  research  D i l l e y , O c h i t i l l , P e r l , & Volberding eleven homosexual and  two  b i s e x u a l men  (1985) s t u d i e d  with AIDS.  They  noted the f o l l o w i n g three p s y c h o l o g i c a l themes: u n c e r t a i n t y , i s o l a t i o n , and  i l l n e s s as  U n c e r t a i n t y of the d i s e a s e and medical and a n x i e t y i n these s u b j e c t s .  retribution. care caused  anger  Isolation resulted  h o s p i t a l i n f e c t i o n c o n t r o l procedures,  from  abandonment by  e x i s t i n g s o c i a l support systems, and p r e - e x i s t i n g geographical d i s t a n c e from f a m i l y members. r e t r i b u t i o n was  expressed  I l l n e s s as  i n f e e l i n g s of g u i l t for  having had numerous sexual partners and/or l e a d i n g a homosexual l i f e s t y l e .  D i l l e y and  that these p a t i e n t s experienced and  his colleagues  considerable discomfort  r e q u i r e d a great d e a l of s o c i a l support  psychotherapeutic  felt  intervention.  The  and  identified  p s y c h o l o g i c a l themes c o u l d very l i k e l y present i n i n d i v i d u a l s who  t e s t HIV antibody  Donlou, Wolcott, conducted  positive.  G o t t l i e b , & Landsverk  (1985)  a p i l o t study to assess s o c i a l support,  esteem, mood s t a t e , and  self-  p s y c h o s o c i a l needs r e p o r t e d by  21 homosexual or b i s e x u a l males with AIDS or ARC. group, the respondents S o c i a l Supports  As a  r e p o r t e d , on the Resources and  Q u e s t i o n n a i r e , a r e l a t i v e l y l a r g e number  of c l o s e f r i e n d s and a s i g n i f i c a n t amount of a v a i l a b l e s o c i a l support. questions  However, responses  to open-ended  i n d i c a t e d a marked decrease  in social  and  sexual r e l a t i o n s h i p s f o l l o w i n g an AIDS or ARC (Donlou, et a l . , 1985). of an HIV  antibody  It is l i k e l y that  diagnosis  confirmation  p o s i t i v e s t a t u s could have a s i m i l a r  e f f e c t on the s o c i a l and  sexual r e l a t i o n s h i p s of the  s e r o p o s i t i v e person. Hansen, Booth, Fawal, & Langner (1988) s t u d i e d employee's b e h a v i o r a l i n t e n t i o n s toward a co-worker had  t e s t e d HIV  antibody  positive.  A convenience sample  c o n s t i t u t e d the research s u b j e c t s who a q u e s t i o n n a i r e designed t e s t was  self-administered  by the r e s e a r c h e r s .  A pilot  done but n e i t h e r r e l i a b i l i t y nor v a l i d i t y  e s t a b l i s h e d f o r the t o o l . that the responding  who  A n a l y s i s of the data  was  revealed  h e a l t h care workers had more  p o s i t i v e b e h a v i o r a l i n t e n t i o n s toward s e r o p o s i t i v e coworkers than d i d the responding non-health  care workers.  white or blue  Behavioral  collar  i n t e n t i o n s of a l l  s u b j e c t s were more p o s i t i v e than the r e s e a r c h e r s a n t i c i p a t e d from the l i t e r a t u r e I t should  had  (Hansen, e t a l . , 1988).  be noted, however, that i n t e n t i o n s represent  t h a t which i s intended  and  not n e c e s s a r i l y what i s done  in p r a c t i c e . Rosevelt  (1987) s t u d i e d workplace d i s c r i m i n a t i o n  perceived by gay male employees with AIDS or ARC. Norbeck S o c i a l Support Questionnaire measure s o c i a l support designed  and  another  by the i n v e s t i g a t o r , was  (NSSQ) was  The  used to  questionnaire, used to determine  perceived d i s c r i m i n a t o r y p r a c t i c e s . compared to a normative American  NSSQ s c o r e s were  sample of h e a l t h y employed  male s u b j e c t s (Norbeck, Lindsey, & C a r r i e r ! ,  1983).  The mean number of persons comprising the study  group's  s o c i a l network was 9.3 persons.  T h i s was lower  than the normative sample which l i s t e d an average of 12.2  persons.  Subscale t o t a l s f o r i n d i c a t o r s of  f u n c t i o n a l support were a l s o lower f o r the AIDS/ARC group. Summary Research c l e a r l y emphasizes the importance of s o c i a l support. and education.  T h i s has relevance f o r n u r s i n g p r a c t i c e Nurses are i n key p o s i t i o n s to plan and  implement programs to heighten the awareness of p a t i e n t s , the g e n e r a l p u b l i c , and h e a l t h c a r e workers. In a d d i t i o n , nurses can devise s t r a t e g i e s to enhance s o c i a l support f o r those who t e s t HIV a n t i b o d y p o s i t i v e .  CHAPTER THREE Methodology Introduction In t h i s chapter  the research d e s i g n , sample and  s e t t i n g , data c o l l e c t i o n procedures,  instruments,  data  a n a l y s i s , and p r o t e c t i o n of human r i g h t s are addressed. Research  Design  This study employed a comparative d e s i g n . were two groups.  S o c i a l support  There  f o r each group was  measured using the NSSQ (Appendix A ) . Sample and S e t t i n g In t h i s study, r e s e a r c h s u b j e c t s were d i v i d e d i n t o two  groups.  One group c o n s i s t e d of homosexual male  s u b j e c t s aged 20 to 49 years, who l i v e d i n s t i t u t i o n and t e s t e d HIV antibody  outside an  positive.  The other  group was composed of homosexual male s u b j e c t s , a l s o aged 20 to 49 years, who l i v e d o u t s i d e an i n s t i t u t i o n , had  not been t e s t e d and whose HIV antibody s t a t u s was  not known.  No s u b j e c t s had a d i a g n o s i s of AIDS.  Each  s u b j e c t who returned h i s q u e s t i o n n a i r e was able to comprehend and communicate i n w r i t i n g using the E n g l i s h language, and was w i l l i n g and p h y s i c a l l y able to complete the q u e s t i o n n a i r e .  A minimum of t e n  respondents per group was sought. q u e s t i o n n a i r e s were r e t u r n e d .  A t o t a l of 25  There were 13 responses  from the known p o s i t i v e group and t e n from the group  whose antibody s t a t u s was not known.  Three  q u e s t i o n n a i r e s were not used f o r a n a l y s i s .  One of these  q u e s t i o n n a i r e s was from a female respondent, another  was  from a male who had t e s t e d n e g a t i v e , while another q u e s t i o n n a i r e was p a r t i a l l y and i n c o r r e c t l y The proposed  study was a d v e r t i s e d  completed.  i n Angles, the  West Ender, the Ubyssey, and the AIDS Vancouver Newsletter (Appendix  B).  o f f i c e s of AIDS Vancouver,  Island  Posters were put up a t the AIDS Vancouver I s l a n d , the  West End Community Center, and Gays and Lesbians of UBC. In a d d i t i o n , t h i s researcher presented the proposed study to the HIV Antibody P o s i t i v e Support Group and then addressed t h e i r q u e s t i o n s . f a c i l i t a t o r mentioned meetings.  The support  group  the study a t subsequent  group  I n t e r e s t e d s u b j e c t s p i c k e d up a packet from a  s t a f f member a t the o f f i c e s of AIDS Vancouver,  AIDS  Vancouver I s l a n d , the West End Community Center, or Gays and Lesbians of UBC. Data C o l l e c t i o n  Procedures  A l e t t e r was sent to the D i r e c t o r of AIDS Vancouver,  the P r e s i d e n t of the Board of AIDS Vancouver  I s l a n d , Community Center Coordinator of the West End Community Center, and the P r e s i d e n t of Gays and Lesbians of UBC, r e q u e s t i n g t h e i r c o o p e r a t i o n (Appendix C ) . F o l l o w i n g agreement from these o r g a n i z a t i o n s , s u b j e c t s who met the s p e c i f i e d c r i t e r i a and were w i l l i n g to  participate  i n the study picked  up a packet from a s t a f f  member at each of the f a c i l i t i e s . contained:  an explanatory  research subject self-addressed, researcher.  Each packet  covering  letter  to the  (Appendix D), the NSSQ forms, and a stamped envelope f o r r e t u r n to t h i s  Each r e s e a r c h subject completed the  questionnaire  and returned  i t by m a i l .  Instruments Permission  was obtained  t o use the s t a n d a r d i z e d  NSSQ to determine a v a i l a b l e s o c i a l support  (Appendix E ) .  T h i s instrument i s e a s i l y s e l f - a d m i n i s t e r e d and taps the v a r i a b l e s of f u n c t i o n , network, and l o s s .  The  f u n c t i o n a l components include a f f e c t , a f f i r m a t i o n , and aid.  Network p r o p e r t i e s include the number of people  comprising  the network, frequency of c o n t a c t the  i n d i v i d u a l has with network members, and d u r a t i o n of h i s r e l a t i o n s h i p with the members l i s t e d . members and l o s s of support members are i n c l u d e d . added to the NSSQ.  p r e v i o u s l y provided  by these  In a d d i t i o n , one q u e s t i o n was  T h i s question  who t e s t e d HIV antibody  Loss of network  was addressed to those  p o s i t i v e and asked which s o c i a l  network members he informed of h i s s e r o p o s i t i v e s t a t u s . Each research  s u b j e c t who completed the NSSQ was  asked to record the f o l l o w i n g Information sheet:  h i s age, gender, m a r i t a l s t a t u s ,  on a s c o r i n g educational  l e v e l , e t h n i c background, r e l i g i o u s p r e f e r e n c e , and  participation  in r e l i g i o u s a c t i v i t i e s .  added to t h i s sheet.  Two items were  F i r s t , s u b j e c t s were asked to  i n d i c a t e i f they were HIV a n t i b o d y p o s i t i v e or i f t h e i r antibody s t a t u s was not known.  Second, i n a d d i t i o n to  the m a r i t a l s t a t u s c a t e g o r i e s of s i n g l e / n e v e r married, married, d i v o r c e d or separated, and widowed, an "other" category was added. Psychometric p r o p e r t i e s of the NSSQ have been tested  (Norbeck, Lindsey, & C a r r i e r  1981, 1983).  First,  concurrent v a l i d i t y was e s t a b l i s h e d to determine the degree  to which the NSSQ c o i n c i d e d with a measure of  s o c i a l support that had r e l i a b i l i t y and v a l i d i t y data available.  The Cohen and Lazarus Support Subscale i s  one such t o o l .  The c o r r e l a t i o n between emotional  support on the Cohen and Lazarus S o c i a l Support  Subscale  and a f f e c t and a f f i r m a t i o n on the NSSQ was moderately s i g n i f i c a n t , r = .51 and .56, r e s p e c t i v e l y (Norbeck  et a l . ,  1981).  (p<.001)  L e v e l s of r e l i a b i l i t y on a l l  p r o p e r t i e s of s o c i a l support were e s t a b l i s h e d by a t e s t / r e t e s t procedure. all  The r e l i a b i l i t y c o e f f i c i e n t f o r  items of the NSSQ ranged  from  .85 t o .92 a f t e r  r e t e s t i n g i n one week using a sample of 75 employed adults  (p<.0001) (Norbeck  et a l . ,  c o n s i s t e n c y was t e s t e d through all  items.  1981).  Internal  i n t e r c o r r e l a t l o n s between  The c o r r e l a t i o n s ranged  from  .72 to .98  between the f u n c t i o n a l score ( t o t a l score of questions 1  - 6) and s e p a r a t e (affect, aid,  scores  questions  questions  1-2;  the  total  affirmation,  5 - 6 ) and from  of each of the s u b s c a l e correlation  of a l l the s u b s c a l e  items  between s c o r e s  score  questions  3-4;  .74 t o .97 between (p<.0001).  (.94) between t h e s o c i a l  functional  items  scores  T h e r e was  high  network s c o r e and  b u t t h e r e was no c o r r e l a t i o n  on a n y o f t h e s e  items  and t h e l o s s  score  (Norbeck e t a l . , 1 9 8 1 ) . A second  phase o f t e s t i n g  (Norbeck e t a l . , 1 9 8 3 ) . to develop and  test  The p u r p o s e  normative data  base  significant  two  similar  and  need  association  social  correlations  construct  from  validity.  employed was  found  between t h e NSSQ and (need  for inclusion  A l s o , t h e r e was a l a c k o f  (need  through  for control).  Questionnaire).  t h e PRQ  main e f f e c t  relationships  (Personal  Predictive  subscale  Concurrent  medium l e v e l s o f  between t h e NSSQ and a n o t h e r  support,  significant  subjects  between t h e NSSQ and an u n r e l a t e d  was o b t a i n e d  association  adult  validity  interpersonal constructs  interpersonal validity  Construct  for affection).  phase was  and p r e d i c t i v e  i s now a v a i l a b l e  male and f e m a l e a d u l t s .  conducted  of t h i s  f o r employed  construct, concurrent,  A normative data  through  t h e NSSQ was  t o measure  Resources  validity  was found  tool  was a l s o f o u n d .  A  f o r the d u r a t i o n of  in predicting  negative  mood, a s  w e l l as two  s i g n i f i c a n t interactions  l i f e s t r e s s and  duration  of r e l a t i o n s h i p s  product of l i f e s t r e s s and Norbeck and  Tilden  aid)  (1988 ) discus's  p r o s o c i a l behaviours as an benefit  and  the  the  cross-  They i d e n t i f y  i n d i v i d u a l ' s helping  of another, i n c l u d i n g  assistance.  product of  (Norbeck, et a l . , 1983).  c u l t u r a l study of s o c i a l support.  the  (the  the  acts  for  tendency to o f f e r  Common p r o s o c i a l behaviors such as some  forms of communication, r e c i p r o c i t y , attachment, altruism, cultures  and  m u t u a l i t y have been documented i n a l l  (Bridgeman, 1983).  Delgado (1983) found the  However, C a u d i l l  s p e c i f i c enactment of  behaviors seems to be s t r o n g l y differences.  (1975) and  influenced  prosocial  by c u l t u r a l  Therefore, when comparing s o c i a l support  resources across c u l t u r e s ,  the  samples should be  i n s o c i a l c l a s s , age,  and  health  variable 1988).  of c u l t u r e  can  Subjects who  these s i m i l a r i t i e s  sex, be  isolated  participated  status  the  (Norbeck & T i l d e n ,  i n t h i s study  had  (see Chapter F o u r ) . Data  Analysis  Information from the q u e s t i o n n a i r e s was by compiling the demographic data and both groups of research s u b j e c t s . statistics  so  similar  organized  NSSQ questions for  Descriptive  ( i n c l u d i n g means, medians, ranges) were used  to analyze m a r i t a l  status, ethnic  background, r e l i g i o u s  preference, p a r t i c i p a t i o n i n r e l i g i o u s a c t i v i t i e s ,  loss  of network members, as well as whom the p o s i t i v e s u b j e c t s informed  antibody  of t h e i r s e r o p o s i t i v e s t a t u s .  Pitman Randomization (Snedecor & Cochran, 1980) to analyze the age, and  was  used  e d u c a t i o n a l l e v e l , and f u n c t i o n a l  network p r o p e r t i e s of s o c i a l support  for each group.  In a d d i t i o n , P-values from the Wilcoxon-Mann-Whitney t e s t are given f o r completeness. P r o t e c t i o n of Human Rights Human r i g h t s of the r e s e a r c h s u b j e c t s  participating  In t h i s study were p r o t e c t e d by the f o l l o w i n g means. The  research proposal was  Sciences Screening  approved by the UBC  Committee for Research and  Studies I n v o l v i n g Human S u b j e c t s . recorded  A l s o , data  on a numbered NSSQ form by each  Behavioral Other was  participant.  Research s u b j e c t s were i n s t r u c t e d not to s i g n the NSSQ. Subjects were not asked to s i g n a consent completion packets  form because  and r e t u r n of the NSSQ i m p l i e d consent.  c o n t a i n i n g the NSSQ, l e t t e r  s u b j e c t , and  to the  All  research  r e t u r n envelope were i d e n t i c a l .  Thus,  i n d i v i d u a l s were not a s s o c i a t e d with e i t h e r group when they picked up a packet.  In a d d i t i o n , s u b j e c t s  completed the NSSQ's and  returned them by m a i l .  Therefore, anonymity was  ensured.  CHAPTER FOUR P r e s e n t a t i o n and D i s c u s s i o n  of R e s u l t s  Introduction Chapter four  i s organized  i n t o the f o l l o w i n g  areas:  c h a r a c t e r i s t i c s of the sample, r e s e a r c h f i n d i n g s , and discussion  of the r e s u l t s . Characteristics  of the Sample  S i x t y packets were made a v a i l a b l e t o i n d i v i d u a l s interested packets  i n p a r t i c i p a t i n g i n the study.  Forty-five  (75%) were picked up from the f o l l o w i n g  locations:  twenty from AIDS Vancouver, t h i r t e e n  AIDS Vancouver I s l a n d ,  from  s i x from the West End Community  Center, and s i x from the o f f i c e of Gays and Lesbians of UBC.  I t should be noted that  73% of the packets were  picked.up from AIDS Vancouver and AIDS Vancouver and  Island  27% were picked up from the o f f i c e s of Gays and  Lesbians of UBC and the West End Community Center. difference  may be a r e f l e c t i o n of the f u n c t i o n s and  concerns of these groups. and  This  AIDS Vancouver Island  S p e c i f i c a l l y , AIDS Vancouver s t r i v e to provide  for the general p u b l i c and h i g h - r i s k  information  groups; to provide  emotional and p r a c t i c a l support t o i n d i v i d u a l s , spouses/partners, f a m i l i e s , and f r i e n d s ; and to r a i s e funds f o r these purposes. the  Gays and Lesbians of UBC and  West End Community Center a r e o r g a n i z a t i o n s  o f f e r a wide v a r i e t y of other s e r v i c e s  that  t o t h e i r members.  Twenty-six q u e s t i o n n a i r e s representing previously, analysis.  a return three  One  rate  57%.  questionnaires  questionnaire  from a male who  had  tested  incompletely  and  remaining  respondents,  23  of  were r e t u r n e d  was  from a  referred  members of  Ten  subjects  antibodies. "Status  Not  had  not  the  be  for another  another  Of  was  the  been t e s t e d  These w i l l  and  be  "Known P o s i t i v e " g r o u p .  been t e s t e d  These w i l l  and  out.  t h i r t e e n had  antibody p o s i t i v e .  used  female,  seronegative,  incorrectly filled  mail,  mentioned  were n o t  were known HIV t o as  As  by  f o r the  presence  r e f e r r e d t o as  of  HIV  members of  the  Known" g r o u p .  Demographic C h a r a c t e r i s t i c s As  stated  previously,  Kahn  (1979) h y p o t h e s i z e s  demographic c h a r a c t e r i s t i c s a f f e c t the  structure  individual's  convoy.  Demographic d a t a  c o l l e c t e d from  the  subjects  in this  research  gender, m a r i t a l  status,  study  educational  background, r e l i g i o u s p r e f e r e n c e , religious  included level,  and  of  that an  age,  ethnic  participation in  activities.  Age.  As  of F e b r u a r y  6,  1989,  AIDS have been r e p o r t e d AIDS, 1 9 8 9 ) . between the  Of  this  ages of  20  a total  i n Canada  total, and  49  Homosexual/bisexual a c t i v i t y  of  2375 c a s e s  (Federal  Center  2074 were a d u l t  of for  males  years. i s the  major r i s k  factor  for t h i s group r e p r e s e n t i n g 81.6% of a d u l t cases (Federal Center participated to 49 years.  f o r AIDS, 1989).  Research s u b j e c t s who  i n t h i s study were homosexual males aged 20 Because exposure to HIV precedes  of AIDS, s u b j e c t s p a r t i c i p a t i n g  the onset  i n t h i s study appear to  represent Canadian trends with r e s p e c t to age and sexual orientation. Ages of those  i n the Known P o s i t i v e and Status Not  Known groups were compared using a Pitman computer program.  randomization  The Pitman P-value was .02  Mann-Whitney t e s t P-value was .01).  (Wilcoxon-  T h i s suggests  that,  at a s i g n i f i c a n c e l e v e l of .05, there was a d i f f e r e n c e between the groups with regard to age. Ages of the s u b j e c t s i n the Known P o s i t i v e group ranged from 27 to 49 years.  The mean age was 38 with a  standard d e v i a t i o n of 6.8 years. years.  The median age was 39  Ages of s u b j e c t s i n the Status Not Known group  ranged from 20 to 48 y e a r s .  The mean age f o r t h i s group  was 29.6 with a standard d e v i a t i o n of 8.4 y e a r s . median age was 27 years  (see t a b l e I ) .  The  Table I Ages of Research Subjects From the Known P o s i t i v e and Status Not Known Groups  Groups  Age  Known P o s i t i v e Frequency  Status Not Known Frequency  20-24  0  3  25-29  3  4  30-34  0  0  35-39  4  2  40-44  4  0  45-49  2  1  Total  13  10  Median  39  27  Mean  38  29.6  Range  27 - 49  20 - 48  Individuals average, group.  f r o m t h e Known P o s i t i v e  older than  those  from  First,  UBC g r o u p .  These  individuals  community a r e l i k e l y homosexual Positive longer  community.  been encouraged Marital  than  required medical  no one r e p o r t e d  divorced  or separated, they  were  relationship".  these  fora  relatively  i n t e r v e n t i o n and t o be t e s t e d .  Subjects  single/never married,  two were  three  N o t Known  s t a t u s as f o l l o w s :  or separated,  their  homosexual  i n the Status  was d i v o r c e d  he was  legally  i n a "long-term  marital  group entered  none were w i d o w e d , a n d  married,  relationship"  t o the virus  e i g h t were  being  single/never  indicated  the general  themselves  i n t h e Known P o s i t i v e  married,  their  of  f r o m t h e Known  As a r e s u l t ,  s t a t u s as f o l l o w s :  indicated  group  the university  Second, those  t o or decided  N o t Known  Status.  Subjects  entered  from  g r o u p may h a v e b e e n e x p o s e d  men may h a v e  N o t Known  t h e Gays and L e s b i a n s  t o be y o u n g e r  period of time.  marital  from  on  for this  many o f t h e S t a t u s  may h a v e b e e n r e s p o n d e n t s  older  the Status  T h e r e may be s e v e r a l r e a s o n s  difference.  group were,  no one r e p o r t e d  eight  being  group were  married,  none were w i d o w e d , a n d one  i n a "monogamous  (see t a b l e I I ) .  homosexual  one  45 Table II M a r i t a l Status of Research Subjects From the Known P o s i t i v e and Status Not Known Groups  Groups  M a r i t a l Status  Known P o s i t i v e Frequency  Single,  Never  8  (62)  (%)  Status Not Known Frequency  8  (%)  (80)  Married Marr ied  0  Divorced or  2  0 (15)  1  (10)  Separated Widowed  0  Other  3  Total  0 (23)  13 (100)  1  (10)  10 (100)  The m a j o r i t y of s u b j e c t s from both groups were s i n g l e / n e v e r married.  However, 80% of s u b j e c t s from the  Status Not Known group were of t h i s c a t e g o r y compared to only 62% from the Known P o s i t i v e group.  This difference  may be because the Status Not Known group members were, on average, younger  than those from the Known P o s i t i v e  group. Educational  Level.  The e d u c a t i o n a l l e v e l of i n d i v i d u a l s i n both groups was a t or above the attainment of grade 12. The e d u c a t i o n a l l e v e l of s u b j e c t s i n the Known P o s i t i v e group ranged from 12 to 20 years, with a mean of 14.7 years.  The standard d e v i a t i o n f o r t h i s group was 2.5  and the median l e v e l 14 years.  For those i n the Status  Not Known group, the range was a l s o 12 t o 20 years, with a mean l e v e l of 15.6 y e a r s .  The standard d e v i a t i o n f o r  t h i s group was 2.5 and the median 15.5 years (see t a b l e III).  The Pitman randomization t e s t P-value was .44  (the Wilcoxon-Mann-Whitney t e s t P-value was .38), suggesting that there I s , s t a t i s t i c a l l y ,  little  d i f f e r e n c e between the groups with regard to e d u c a t i o n a l level.  Table I I I Educational Positive  Level  of Research  and S t a t u s  Subjects  F r o m t h e Known  N o t Known G r o u p s  Groups  Educational  Known P o s i t i v e  Level (yrs)  Frequency  Status Not Known Frequency  <12  0  0  12-14  8  4  15-17  2  4  18-20  3  2  Total  13  10  Median  14.0  15.5  Mean  14.7  15.6  12-20  12-20  Range  It i s noteworthy that r e s e a r c h s u b j e c t s from both groups had. a t t a i n e d a t l e a s t a grade 12 e d u c a t i o n .  If  t h i s f i n d i n g i s r e p r e s e n t a t i v e of many gay men i n t h i s age group, nurses must be cognizant of t h i s working with these c l i e n t s .  f a c t when  Patient teaching, for  example, may be designed with t h i s l e v e l of education i n mind. Ethnic  Background.  E t h n i c background documented.  A l l but two s u b j e c t s c a t e g o r i z e d  as Caucasian. group l i s t e d  of members from each group was themselves  Two persons from the Status Not Known  t h e i r e t h n i c backgrounds as A s i a n .  This  mix of e t h n i c backgrounds may be r e p r e s e n t a t i v e of the p r e v a i l i n g c u l t u r a l groups i n h a b i t i n g the Vancouver and southern Vancouver  Island  regions.  R e l i g i o u s P r e f e r e n c e and P a r t i c i p a t i o n . Research s u b j e c t s from the Known P o s i t i v e  group  i n d i c a t e d they had more r e l i g i o u s a f f i l i a t i o n s than those from the Status Not Known group.  Nine members of  the Known P o s i t i v e group were P r o t e s t a n t , one C a t h o l i c , no one Jewish, one "other", and two expressed no r e l i g i o u s preference.  Of the Status Not Known group,  four were P r o t e s t a n t , one C a t h o l i c , no one Jewish, and f i v e expressed no r e l i g i o u s p r e f e r e n c e (see t a b l e I V ) .  49 Table IV Religious  Preference of Research Subjects From the Known  P o s i t i v e and Status Not Known Groups  Groups  Religious  Known  Preference  Positive Frequency (%)  Status Not Known Frequency (%)  Protestant  9 (69.2)  4 (40)  Catholic  1  1 (10)  Jewish  0  Other  1  None  2 (15.4)  Total  (7.7)  0 (7.7)  13 (100)  0 5 (50)  10 (100)  P a r t i c i p a t i o n i n r e l i g i o u s a c t i v i t i e s was rated on a s c a l e of one ( i n a c t i v e ) to four participation). each group.  (regular  Weighted averages were c a l c u l a t e d f o r  These averages f o r the Known P o s i t i v e  and the Status Not Known group were 1.8 and 2.3 respectively  (see t a b l e V ) .  group  50 Table V Participation  in Religious A c t i v i t i e s  Subjects From the Known P o s i t i v e  by Research  and Status Not Known  Groups  Groups  Participation Known  in Religious  Positive  Activities  1)  inactive  2) infrequent (1-2  Status Not Known  7  4  3  2  2  1  1  3  13  10  times/year) 3) o c c a s i o n a l  (about  monthly) 4 ) r e g u l a r (weekly)  Total Weighted Average  1 . 8  2.3  Median  1  2  13.4  28.5  Attendance  (tlmes/yr.)  Members more  often  of  Status  in religious  Known P o s i t i v e this  the  group.  difference.  activities There  During  investigator  has  faced  potentially  turn  with to  a  Others,  however,  because  they  Positive their  Because  unwelcome  in a  traditional In  that  older  of  this  religious  study,  some  reasons  than  those  openness,  for  when  situation,  social  support.  organizations  those  from the  more  open  they  may  that  Known  about  who h a d n o t  organization  the  the  individuals,  and perhaps  o n l y 50% o f  religious  Known P o s i t i v e  state  for  Also,  g r o u p a n d a p p r o x i m a t e l y 85%  the  from  been  feel values  the  family.  this  indicated  some  life-threatening  betrayed.  orientation  members  several  t u r n away f r o m t h e s e  g r o u p were  tested.  than  participate  nursing practice,  organizations  feel  sexual  may be  her  observed  religious  N o t Known g r o u p  a religious  of  the the  Status  Known P o s i t i v e  preference.  g r o u p members preference,  Although  were  they  N o t Known  more  were  group  more  likely  less  of  to  likely  to  participate. It  is  unfortunate  participation  in religious  HIV a n t i b o d y p o s i t i v e comparison. participate  that  Perhaps much a t  N o t Known g r o u p ,  is the  any  other  data  indicating  activities  not  prior  available  for  Known P o s i t i v e time.  feelings  For  those  to  testing  purposes  group d i d from the  may s u r f a c e .  Some  of not Status o£  these i n d i v i d u a l s may, participation  subconsciously, increase  i n r e l i g i o u s a c t i v i t i e s as a safeguard  from becoming HIV antibody p o s i t i v e . about p a r t i c i p a t i o n  Again, i n f o r m a t i o n  i n r e l i g i o u s a c t i v i t i e s p r i o r to the  i d e n t i f i c a t i o n of HIV  i n 1981  would be  useful.  F i n a l l y , with regard to e d u c a t i o n a l l e v e l s , s t a t i s t i c a l l y s i g n i f i c a n t d i f f e r e n c e was the s t u d i e d groups.  found between  S i m i l a r l y , no d i f f e r e n c e s were  found with regard to e t h n i c backgrounds and preferences. noted.  no  religious  There were, however, other d i f f e r e n c e s  I n d i v i d u a l s from the Known P o s i t i v e group were  somewhat older than those from the Status Not Known group. i  Although the Status Not Known group members had  •  fewer r e l i g i o u s p r e f e r e n c e s , they claimed to p a r t i c i p a t e in r e l i g i o u s a c t i v i t i e s more o f t e n than the Known P o s i t i v e group whose members i n d i c a t e d more r e l i g i o u s preferences.  Other than these two d i f f e r e n c e s , the  groups were s i m i l a r . F i n d i n g s and D i s c u s s i o n The  f i n d i n g s o£ t h i s study are presented i n  r e l a t i o n to the f i v e research q u e s t i o n s which evolved from the conceptual framework.  As p r e v i o u s l y s t a t e d ,  Kahn (1979) i d e n t i f i e s the concept of convoy.  One's  convoy Includes a set of persons on whom he r e l i e s f o r support and those who  r e l y on him  Research Questions #1 and #2,  f o r support.  In  s o c i a l support a v a i l a b l e  to the two study groups  i s presented  i d e n t i f i c a t i o n of each group's (1979) a l s o b e l i e v e s convoy determine or r e c e i v e s .  through  convoy members.  that c e r t a i n p r o p e r t i e s  Kahn  of one's  the adequacy of s o c i a l support he  gives  For t h i s reason, convoy members the Known  P o s i t i v e group chose to inform of t h e i r s e r o p o s i t i v e status  i s addressed  i n Research Question #3.  Kahn  (1979) suggests that s o c i a l support has a b u f f e r i n g e f f e c t and moderates the r e l a t i o n s h i p between acute s t r e s s and w e l l - b e i n g .  This s u g g e s t i o n i s considered i n  Research Questions #4 and #5,  where d i f f e r e n c e s i n  s o c i a l support p r e s e n t l y a v a i l a b l e to the two groups i s analyzed as w e l l as the l o s s of s o c i a l network members. Research Question #1:  S o c i a l Support A v a i l a b l e to HIV  Antibody P o s i t i v e Homosexual Males Aged 20 to 49 Years Who  L i v e i n the Community The number of i n d i v i d u a l s making up the Known  P o s i t i v e group's persons.  s o c i a l network ranged  from  8-24  The t h i r t e e n Known P o s i t i v e group members  l i s t e d a t o t a l of 204 s o c i a l network members. median number of s o c i a l network members was Roughly  The  15 persons.  22% of s o c i a l network members l i s t e d were  f a m i l y / r e l a t i v e s and spouse/partner while about l i s t e d were f r i e n d s  (see t a b l e V I ) .  61%  54 Research Question #2:  S o c i a l Support A v a i l a b l e to  Homosexual Males Aged 20 to 49 Years Who Live  i n the  Community and Whose HIV Antibody Status Are Not Known The number of i n d i v i d u a l s making up the Status Not Known group's s o c i a l network ranged from 5 - 2 4 persons. The ten research s u b j e c t s from t h i s group reported a t o t a l of 143 network members. persons.  Similar  The median was 14.5  to the Known P o s i t i v e  group,  approximately 25% of network members l i s t e d were family/relatives friends  and spouse/partner while 67% were  (see t a b l e V I ) .  55 Table VI Number of S o c i a l Network Members L i s t e d by Research Subjects From the Known P o s i t i v e and Status Not Known Groups  Groups  Category  Known P o s i t i v e Frequency  (%)  Status Not Known Frequency  Family/ Relatives  40  (19.6)  33  (23.1)  Partner  5  (2.5)  3  (2.1)  Frlends  124  (60.8)  96  (67.1)  Associates  6  (2.9)  3  (2.1)  Ne ighbors  2  (1.0)  2  (1.4)  11  (5.4)  2  (1.4)  6  (2.9)  0  (0)  Priest  3  (1.5)  1  ( .7)  Other  7  (3.4)  3  (2.1)  Total  204  (100)  143  (100)  Spouse/  Work/School  Health Care Providers Counselor/ Therapist Minister/  (%)  K e s s e l r i n g , Lindsey, Dodd, and Lovejoy  (1986),  Lindsey, Ahmed, & Dodd (1985), Lindsey, Chen, & Dodd (1985), and Norbeck et a l . (1983) s t u d i e d the s o c i a l support a v a i l a b l e to Swiss, E g y p t i a n , and Taiwanese cancer p a t i e n t s as well as a group of employed a d u l t s from the U.S.A. r e s p e c t i v e l y .  Rosevelt  (1987) s t u d i e d  the s o c i a l support a v a i l a b l e to gay men with AIDS or ARC.  In the above s t u d i e s , the NSSQ was used t o measure  s o c i a l support.  Compared to these s t u d i e d groups,  r e s e a r c h s u b j e c t s from the Known P o s i t i v e group had the highest mean number, of i n d i v i d u a l s i n t h e i r networks.  social  This measurement f o r the Status Not Known  group was surpassed  m a r g i n a l l y by the Egyptian group i n  the Lindsey, Ahmed, & Dodd (1985) study  (see t a b l e V I I ) .  Table VII Number of S o c i a l Network Members L i s t e d by Groups From Switzerland, Taiwan, Egypt, U.S.A., as w e l l as the Known P o s i t i v e , and Status Not Known groups  Number of Persons L i s t e d Groups  Mean  Range  Swiss (n=42)  9.3  1-24  10.25  3-16  Taiwanese Egyptian  (n=40) (n=40)  U.S.A. (n=136) AIDS/ARC  (n=40)  Known P o s i t i v e  (n=13)  Status Not Known (n=10)  14.8  10-23  12.2  3-20  9 .3  1-22  15.7  8-24  14.5  5-24  Note. Adapted from " S o c i a l network and support perceived by Swiss cancer p a t i e n t s "  by A. K e s s e l r i n g ,  A. Lindsey,  M. Dodd, & N. Lovejoy, 1986, Cancer Nursing, 9_ (4), p. 159.  Research Question #3:, S o c i a l Network Members the HIV Antibody P o s i t i v e Subjects Inform of T h e i r  Seropositive  Status A question was added t o the NSSQ t o f a c i l i t a t e measurement of whom the Known P o s i t i v e group members inform of t h e i r s e r o p o s i t i v e  status.  As p r e v i o u s l y  mentioned, research s u b j e c t s from the Known P o s i t i v e group l i s t e d a t o t a l of 204 i n d i v i d u a l s  i n their  networks.  of these 204,  Research s u b j e c t s f e l t  153  knew they had t e s t e d  did  not know.  that,  HIV antibody p o s i t i v e and 51  Family/relatives,  spouse/partners, and  f r i e n d s were the most represented c a t e g o r i e s members who knew of the s e r o p o s i t i v e VIII).  Family/relatives  status  (see t a b l e  and spouse/partners made up  about 21% of those who knew while f r i e n d s approximately 56% of those who knew. Known P o s i t i v e  of network  individuals confide  This  represented suggests  that  primarily in  f a m i l y / r e l a t i v e s , spouse/partners, and f r i e n d s .  This  f i n d i n g may not be unusual because whom the Known P o s i t i v e members t e l l  p a r a l l e l s the number of  family/friends  and spouse/partners  (21.9%) and f r i e n d s  (60.8%) l i s t e d  i n t h e i r s o c i a l networks.  59 Table  VIII  Members of the Known P o s i t i v e Group's S o c i a l Network Know of the Subject's  Seropositive  Who  Status  Known P o s i t i v e Group  Category  Knows  Does Not Know  Total  Frequency (%)  Frequency (%.)  Frequency (%)  28 (18.3)  12 (23.5)  40 (19.4)  Family/ Relatives Spouse/ Partner Friends  5  (3.3)  86 (56.2)  0  5 (2.5)  38 (74.5)  124 (60.8)  Work/School Associates Neighbors  6  (3.9)  2(1.3)  0  6  (2.9)  0  2(1.0)  Health Care Providers  11  (7.2)  0  11  (5.4)  6  (3.9)  0  6  (2.9)  3  (2.0)  0  3 (1.5)  Other  6  (3.9)  1  Total  153  (100)  Counselor/ Therapist Minister/ Priest  (2.0)  51 (100)  7  =  (3.4)  204 (100)  60 Research Question #4: Available  Difference  in Social  Support  to these Two Groups  Questions frl through 1*6 of the NSSQ address functional  p r o p e r t i e s of s o c i a l support.  averages were c a l c u l a t e d of s i x q u e s t i o n s . The Pitman  Weighted  f o r each response to t h i s s e t  The two groups were then compared.  randomization t e s t P-value was .89 (Wilcoxon-  Mann-Whitney t e s t P-value was .79).  T h e r e f o r e , there  was s t a t i s t i c a l l y no s i g n i f i c a n t d i f f e r e n c e groups  i n r e l a t i o n to f u n c t i o n a l  support.  In a d d i t i o n ,  affirmation,  between the  p r o p e r t i e s of s o c i a l  questions r e f l e c t i n g  affect,  and a i d were assessed s e p a r a t e l y .  averages were c a l c u l a t e d  f o r q u e s t i o n s #1 and #2 (which  address a f f e c t ) , f o r questions #3 and #4 (which affirmation), aid).  Weighted  address  and f o r questions #5 and #6 (which address  The two groups were then compared.  randomization t e s t r e s u l t  The Pitman  f o r q u e s t i o n #1 and #2 was  P=.86 (Wilcoxon-Mann-Whitney t e s t P=.99), f o r questions #3 and #4, Pitman  P=.69 (Wilcoxon-Mann-Whitney P=.53),  and f o r questions #5 and #6, Pitman Mann-Whitney t e s t P=.89).  P=.93 (Wilcoxon-  Statistically,  the two groups  were not s i g n i f i c a n t l y d i f f e r e n t with regard t o functional  p r o p e r t i e s of s o c i a l support.  Questions #7 and #8 of the NSSQ address the groups' network p r o p e r t i e s of s o c i a l support. question was analyzed s e p a r a t e l y .  First,  each  Question #7 r e f l e c t s  how long the research s u b j e c t has known the network member.  The median d u r a t i o n of r e l a t i o n s h i p s was two to  f i v e years f o r both groups.  Question  #8 r e f l e c t s the  frequency of contact the r e s e a r c h s u b j e c t has with support group members.  The Known P o s i t i v e group  reported monthly (median) c o n t a c t with t h e i r network members.  The Status Not Known group reported  weekly (median) contact with t h e i r members. difference  social  This  i n frequency of c o n t a c t may occur f o r a  v a r i e t y of reasons. group tended  For example, the Known P o s i t i v e  to have a l a r g e r s o c i a l  Consequently,  network.  these people may have l e s s time to spend  with each network member. Questions  #7 and #8 were analyzed  Weighted averages  were c a l c u l a t e d  t h i s s e t of two q u e s t i o n s . compared.  collectively.  f o r each response to  The two groups were then  The Pitman randomization  t e s t P-value  was .95  (Wilcoxon-Mann-Whitney t e s t P=.99), i n d i c a t i n g s t a t i s t i c a l l y no s i g n i f i c a n t d i f f e r e n c e between the groups with regard to network p r o p e r t i e s of s o c i a l support. Research  Question  #5:  D i f f e r e n c e s i n S o c i a l Network  Members No Longer A v a i l a b l e to Subjects i n Each Group Question members. (85%)  #9 of the NSSQ addresses  l o s s of network  Eleven of the 13 Known P o s i t i v e group members  i n d i c a t e d they had, d u r i n g the past year, " l o s t an  important  r e l a t i o n s h i p due  to moving, a job change,  d i v o r c e or s e p a r a t i o n , death, or some other (Norbeck et a l . , 1981).  reason"  The Known P o s i t i v e group  members were g e n e r a l l y older than those from the Status Not Known group.  Thus, one could expect the  group to have experienced more such l o s s e s . of  former Conversely,  the ten Status Not Known group members, only  (50%)  i n d i c a t e d they had  i n the l a s t  l o s t an important  five  relationship  year.  In question #9a,  s u b j e c t s were i n s t r u c t e d to  i n d i c a t e the number of persons them from each s t a t e d category. P o s i t i v e group members who  had  no longer a v a i l a b l e to Of the 11 Known l o s t network members,  two  s u b j e c t s provided check marks to i n d i c a t e the category, rather than s t a t i n g the number of members l o s t category.  from t h a t  The remaining nine s u b j e c t s , however,  provided numerical data  (see t a b l e IX).  Status Not Known group members who members, two  had  Of the  five  l o s t network  s u b j e c t s provided check marks to i n d i c a t e a  category i n s t e a d of s t a t i n g the number of members l o s t , from that category.  The  provided numerical d a t a . from each category was One  other three s u b j e c t s , however, The number of i n d i v i d u a l s  lost  summed (see t a b l e IX).  has d i f f i c u l t y a n a l y z i n g the data  indicating  l o s s of network members because of the s u b s t a n t i a l amount of missing or incomplete  information.  Nonetheless,  i t i s worth noting that 11 of the 13  members (84.6%) of the Known P o s i t i v e group had l o s t someone s i g n i f i c a n t d u r i n g the past year compared to f i v e of the ten members (50%) of the Status Not Known group. The Known P o s i t i v e group may have l o s t more network members than the Status Not Known group f o r a v a r i e t y of reasons.  According to Rosevelt (1987), gay men form  many of t h e i r most important s o c i a l r e l a t i o n s h i p s with other gay men.  Some of these f r i e n d s may have  contracted and d i e d from AIDS.  A l s o , Known P o s i t i v e men  may move to l o c a t i o n s where access t o h e a l t h care p r o f e s s i o n a l s who have e x p e r t i s e i n the area of AIDS and HIV  infection,  result  i s more r e a d i l y a v a i l a b l e .  T h i s move may  i n detachment from network members such as  f a m i l y , f r i e n d s and work a s s o c i a t e s . (1987) s t a t e s that  A l s o , Rosevelt  i n d i v i d u a l s with any t e r m i n a l i l l n e s s  experience s t i g m a t i z a t i o n because of s o c i e t y ' s discomfort with death and d y i n g .  Those with a confirmed  s e r o p o s i t i v e t e s t r e s u l t may be abandoned f o r t h i s reason or because network members are a f r a i d of c o n t r a c t i n g HIV.  Table IX The Known P o s i t i v e and Status Not Known Groups' Loss of S o c i a l Network Members  Group  Known P o s i t i v e Category  Number Lost  Status Not Known Number Lost  Family/ Relatives  1  •  3  Spouse/ 3  0  32  20  1  2  5  6  1  2  1  2  1  0  Other  0  0  Total  45  35  Partner Fr iends Work/School Associates Ne ighbors Health Care Providers Counselor/ Therapist Minister/ Priest  Question  #9b  of the NSSQ asks s u b j e c t s to provide  an o v e r a l l assessment of how  much support was  provided  by s o c i a l network members no longer a v a i l a b l e  to them.  Responses to t h i s q u e s t i o n , r a t e d  on a s c a l e of 1 (none  at a l l ) to 5 (a great deal) were d i f f i c u l t  to analyze.  Network members l o s t by i n d i v i d u a l s from the Known P o s i t i v e group ranged from 1 to 13.  For the Status  Not  Known group, a range of 1 to 28 members were l i s t e d . These broad  ranges magnify the problem of comparing an  o v e r a l l r a t i n g of l o s t support.  For example, one  d i f f i c u l t y comparing the l o s s of a great d e a l of provided by one little  support  or two  support  members, with the l o s s of a  provided by t w e n t y - f i v e members.  comparison would be more meaningful for the amount of support no longer  has  lost  A  i f the NSSQ asked  from each network members  available.  R e s u l t s of the study have been presented  and  discussed.  Characteristics  described.  Then, f i n d i n g s were d i s c u s s e d i n r e l a t i o n to  the f i v e research q u e s t i o n s .  of the sample were  CHAPTER FIVE Summary, Conclusions, and I m p l i c a t i o n s Introduct ion This study was designed to e x p l o r e d i f f e r e n c e s i n s o c i a l support a v a i l a b l e to i n d i v i d u a l s who t e s t HIV antibody p o s i t i v e and those whose a n t i b o d y s t a t u s i s not known.  F i r s t , demographic c h a r a c t e r i s t i c s of group  members were examined. i d e n t i f i e d and compared.  Research  s u b j e c t s ' convoys were  For those s u b j e c t s who had  t e s t e d antibody p o s i t i v e , network members they of t h e i r s e r o p o s i t i v e s t a t u s were i d e n t i f i e d .  informed In  a d d i t i o n , l o s s of s o c i a l network members was e x p l o r e d . Summary A review of the l i t e r a t u r e showed that  presence,  l a c k , or l o s s of s o c i a l support o f t e n a f f e c t s one's well-being.  For example, s o c i a l support can i n c r e a s e  one's sense of c o n t r o l and mastery  of a problem,  Increase one's s e l f - e s t e e m , and reduce level.  one's a n x i e t y  S o c i a l support may a l s o i n f l u e n c e one's h e a l t h  outcomes, h e a l t h maintenance, and a b i l i t y to cope with illness  (see chapter two). To date, l i t t l e  w r i t t e n about  has been  s o c i a l support a v a i l a b l e to those who t e s t  HIV antibody p o s i t i v e .  As a r e s u l t , t h i s study was  designed to address such gaps i d e n t i f i e d  i n the  1iterature . This d e s c r i p t i v e , comparative  study was conducted  i n B r i t i s h Columbia, Canada.  The study was a d v e r t i s e d  i n s e v e r a l newspapers and n e w s l e t t e r s .  Posters were put  up a t the o f f i c e s of AIDS Vancouver, AIDS Vancouver I s l a n d , the West End Community Center,  Gays and Lesbians  of UBC, as w e l l as a t v a r i o u s l o c a t i o n s on the UBC campus.  A t o t a l of 60 packets,  each c o n t a i n i n g an NSSQ,  l e t t e r to the r e s e a r c h s u b j e c t , and a stamped, envelope,  were made a v a i l a b l e a t these  Data were c o l l e c t e d homosexual males l i v i n g  patient  offices.  from a convenience sample of 26 i n B r i t i s h Columbia's lower  mainland as well as the southern Island.  area of Vancouver  A l l r e s e a r c h s u b j e c t s completed the NSSQ and a information sheet.  Data c o l l e c t e d  from 13  research s u b j e c t s who had t e s t e d HIV antibody and  addressed  positive  from 10 s u b j e c t s who had not been t e s t e d were used.  T h i s information was explored  using d e s c r i p t i v e  s t a t i s t i c s and Pitman randomization  tests.  Demographic c h a r a c t e r i s t i c s of the two groups were examined.  The median ages of s u b j e c t s from the Known  P o s i t i v e and the Status Not Known groups were 39 years and  27 years r e s p e c t i v e l y .  The m a j o r i t y of members from  both groups were s i n g l e / n e v e r married.  Educational  l e v e l s were s i m i l a r , with a median of 14 years f o r the Known P o s i t i v e group and 15.5 years Known group. Caucasian,  f o r the Status Not  A l l s u b j e c t s c a t e g o r i z e d themselves as  with the e x c e p t i o n of two from the Status Not  Known group who were A s i a n .  Half of the Status Not  Known group members i n d i c a t e d no r e l i g i o u s preference compared to 15% of the Known P o s i t i v e group.  However,  the Status Not Known group members i n d i c a t e d participate suggested  they  i n r e l i g i o u s a c t i v i t i e s more o f t e n than was  by members from the Known P o s i t i v e  group.  Network p r o p e r t i e s of s o c i a l support a v a i l a b l e to the two study groups were assessed. of  s o c i a l network members l i s t e d  group was 15 persons.  by the Known P o s i t i v e  Approximately  f a m i l y / r e l a t i v e s and spouse/partner friends.  Approximately  The median number  78% of these  22% were and about  61% were  family/relatives,  spouse/partner, and f r i e n d s knew of the s u b j e c t ' s seropositive status.  The Status Not Known s u b j e c t s  l i s t e d a median of 14.5 persons comprising networks.  Approximately  spouse/partner and about  their  25% were f a m i l y / r e l a t i v e s and 66% were f r i e n d s .  The "Health  Care P r o v i d e r s " and " C o u n s e l o r / T h e r a p i s t " c a t e g o r i e s combined to make up only 8.3% and 1.4% of network members l i s t e d by the Known P o s i t i v e and the Status Not Known groups r e s p e c t i v e l y .  For both groups, the median  d u r a t i o n of r e l a t i o n s h i p s with t h e i r network members was two  to f i v e years.  The Known P o s i t i v e group i n d i c a t e d  they had monthly contact with t h e i r s o c i a l network members.  The Status Not Known group i n d i c a t e d weekly  contact with t h e i r network members.  F u n c t i o n a l p r o p e r t i e s of s o c i a l support a v a i l a b l e to the two study groups were assessed.  The f u n c t i o n a l  p r o p e r t i e s of a f f e c t , a f f i r m a t i o n , and a i d were c o l l e c t i v e l y assessed and compared f o r both  groups.  Then, each property was assessed i n d i v i d u a l l y and the groups compared. not d i f f e r  S t a t i s t i c a l l y , the study groups d i d  significantly.  The number of network members no longer a v a i l a b l e to each study group were e x p l o r e d . noted'.  D i f f e r e n c e s were  Eleven of the 13 Known P o s i t i v e group  indicated  they had, during the past year, l o s t an important relationship.  Of the ten Status Not Known members, o n l y  f i v e stated they had l o s t a r e l a t i o n s h i p . Conclusions Due to the non-random nature of the sampling procedure, the r e s u l t s of t h i s study cannot be generalized.  Nonetheless, the f i n d i n g s of t h i s  study  suggest many s i m i l a r i t i e s as w e l l as some d i f f e r e n c e s among the r e s e a r c h s u b j e c t s s t u d i e d . Demographic c h a r a c t e r i s t i c s of the two groups were similar.  However, the Status Not Known group's  participation  i n r e l i g i o u s a c t i v i t i e s was suggested to  be more frequent than the Known P o s i t i v e  group's.  Although network and f u n c t i o n a l p r o p e r t i e s of s o c i a l support were s i m i l a r  f o r both groups,  l o s s of network  members occurred more f r e q u e n t l y f o r those i n the Known  P o s i t i v e group. reasonably  Because of these d i f f e r e n c e s , one could  (and not s u r p r i s i n g l y ) conclude that  i n d i v i d u a l s who have t e s t e d HIV antibody p o s i t i v e may r e q u i r e more s o c i a l support than those whose antibody status  i s not known. Implications  Nursing P r a c t i c e The  p r a c t i c e of nursing  settings.  takes place  i n a v a r i e t y of  S p e c i f i c a l l y , nurses p r a c t i c e i n h o s p i t a l s ,  p u b l i c h e a l t h u n i t s and p h y s i c i a n s ' occupational educational  offices,  h e a l t h s e t t i n g s , and i n a d m i n i s t r a t i v e or roles.  Nurses must be aware of e x i s t i n g and  p o t e n t i a l b e n e f i t s of s o c i a l support.  For example, an  i n d i v i d u a l ' s s o c i a l network members can provide  social  support by o f f e r i n g nurturance, feedback, models of behaviour, and o p p o r t u n i t i e s  to d i f f u s e s t r e s s .  These  members can o f f e r c o n t i n u i t y over time, deep r e l a t i o n s h i p s , and o p p o r t u n i t i e s as well as r e c e i v e  f o r the person to give  support.  Nurses who work i n h o s p i t a l s are r e s p o n s i b l e f o r planning,  implementing, and e v a l u a t i n g  their clients. needs.  nursing  care f o r  These c l i e n t s have v a r y i n g resources and  For example, f i n d i n g s from t h i s study suggest  that i n d i v i d u a l s who t e s t HIV antibody p o s i t i v e are l i k e l y to lose more s o c i a l network members than i n d i v i d u a l s who have not been t e s t e d .  This f i n d i n g  i n d i c a t e s that the nurse, antibody  p o s i t i v e c l i e n t , should  s o c i a l support and  care  for an  assess  this  context  network for recent changes in s t r u c t u r e changes.  nurses must consider the c l i e n t w i t h i n the  of h i s s o c i a l support  implement care  existing  HIV  client's  for the c l i e n t ' s a b i l i t y to a d j u s t to these  Therefore,  and  planning  support  the c l i e n t and  system.  Then she  in c o l l a b o r a t i o n with him and  system.  The  strategic  his s i g n i f i c a n t  can his  i n c o r p o r a t i o n of  others when planning  complements the more i n d i v i d u a l i s t i c approach that exists.  The  importance of t h i s  plan  inclusion  care now  i s even more  r e l e v a n t s i n c e h e a l t h care p r o f e s s i o n a l s were perceived by n e i t h e r the Known P o s i t i v e nor group to be very  the Status Not Known  supportive.  Namir (1986) s t u d i e d the s o c i a l support gay men  with AIDS.  In t h i s study,  networks of  he found t h a t l a r g e r  s o c i a l networks were able to provide more c o n s i s t e n t and effective  support  than smaller networks.  Namir (1986)  suggests that s o c i a l network members are o f t e n s t r e s s e d with enormous p s y c h o s o c i a l and  f i n a n c i a l needs and  the  smaller the network, the more q u i c k l y i t i s overburdened. care and become  This has  make r e f e r r a l s  relevance  f o r nurses who  plan  for c l i e n t s whose networks have  diminished.  Many nurses have contact with c l i e n t s p u b l i c h e a l t h agencies  and  through  physicians' o f f i c e s .  Tietjen  (1980) points out t h a t , i n modern s o c i e t i e s , many support s e r v i c e s t r a d i t i o n a l l y provided by k i n , neighbors, and f r i e n d s are now provided by p u b l i c agencies.  Therefore, nurses employed i n these s e t t i n g s  must recognize and i n f l u e n c e t h e i r c l i e n t s ' sources of s o c i a l support.  For example, community h e a l t h nurses,  e s p e c i a l l y those who work i n 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 l i n i c s , counsel and educate c l i e n t s as w e l l as f a m i l i e s and s i g n i f i c a n t o t h e r s .  When a p p r o p r i a t e , they  can make r e f e r r a l s to other p r o f e s s i o n a l s such as those in s o c i a l services.  Community h e a l t h nurses can a l s o  make recommendations r e g a r d i n g the need f o r other support s e r v i c e s f o r those who t e s t HIV antibody p o s i t i v e , members of high r i s k groups, or f a m i l y or f r i e n d s of s e r o p o s i t i v e persons. Support  groups are another  important  resource.  Nurses must know which support groups a r e a v a i l a b l e f o r p a t i e n t s , f a m i l y , and/or f r i e n d s .  The t h e r a p e u t i c  p o t e n t i a l of s u p p o r t i v e human r e l a t i o n s h i p s must be r e a l i z e d and s o c i a l support  resources expanded.  I d e a l l y , t h i s approach could be used c o n c u r r e n t l y with the e x i s t i n g  i n d i v i d u a l i s t i c approaches to n u r s i n g c a r e .  Because of the fear surrounding AIDS, employees need i n f o r m a t i o n about worksite r i s k s of c o n t r a c t i n g HIV.  Occupational h e a l t h nurses can provide  information.  As a r e s u l t , s o c i a l support  this  from workmates  may  be l e s s l i k e l y to be withdrawn from the HIV  p o s i t i v e person.  antibody  According to Williamson, Brown and  Packa (1988), employee education must include f a c t u a l information about personal r i s k behaviors and ways of e l i m i n a t i n g or reducing those r i s k s . i n f e c t i o n must be addressed s c i e n t i f i c evidence. h e a l t h nurse  HIV  and countered with sound  In a d d i t i o n ,  l e a r n s one  Myths about  i f the o c c u p a t i o n a l  of the employees i s HIV  p o s i t i v e , she can o f f e r support and  antibody  r e f e r the worker to  c o u n s e l i n g s e r v i c e s or e x i s t i n g support  groups.  Nurse managers are r e s p o n s i b l e f o r resource allocation.  Nurse managers making s t a f f i n g  recommendations, such as the need f o r nurses,  social  workers, c l e r g y , and v o l u n t e e r s , must consider the s o c i a l support needs of HIV antibody p o s i t i v e  clients.  Then a p p r o p r i a t e h e a l t h c a r e p r o f e s s i o n a l s can provide care and s o c i a l support.  Nurse managers may  recommend the implementation  also  of such support s e r v i c e s as  bereavement programs, hospice programs, p a l l i a t i v e  care  s e r v i c e s , or support groups f o r f a m i l i e s , f r i e n d s or lovers  (who  members who  may  be HIV antibody p o s i t i v e ) , and  care f o r c l i e n t s who  are i l l  due  staff  to  HIV.  P o l i c i e s r e g a r d i n g the i d e n t i f i c a t i o n of a c l i e n t ' s "next of k i n " may  become an i s s u e f o r the HIV  antibody  p o s i t i v e c l i e n t ' s partner when d e c i s i o n s cannot by the c l i e n t .  A s t r u g g l e between the  client's  be made  biological  f a m i l y and  could  p o s s i b l y occur.  Thus, c l e a r p o l i c y statements regarding  p a t i e n t s ' "next  of k i n " are r e q u i r e d  h i s partner  to c l a r i f y p o s s i b l e  P o l i c i e s regarding HIV  ambiguities.  alternate therapies  must a l s o be w r i t t e n .  to combat  For example, a p a t i e n t  wish to continue p r a c t i c i n g s e l f - h y p n o s i s massage therapy while in h o s p i t a l .  may  or r e c e i v i n g  If these  therapies  are endorsed by a w r i t t e n p o l i c y , time f o r t h e i r implementation can be and  included  i n the nursing  c o n t i n u i t y of p a t i e n t care w i l l be  care  plan  facilitated.  Nurse managers must r e a l i z e the s t r e s s of c a r i n g for HIV may  infected patients.  provide  diseases  care  For  example, s t a f f  to young p a t i e n t s who  caused by HIV.  nurses  are dying  These nurses may  from  find  themselves caught i n c o n f l i c t s between p a t i e n t s , l o v e r s , f a m i l y , and (Fineberg,  f r i e n d s , or see 1988).  "No  t h e i r p a t i e n t dying  other  disease  alone  i n modern times  engendered such f r u s t r a t i o n , resentment, and  anxiety,  demanded more compassion, i n t e l l i g e n c e , s e l f l e s s n e s s , and  i n t e g r i t y on the part of h e a l t h p r o f e s s i o n a l s "  (Fineberg,  1988,  p. 132).  Therefore,  nurse managers  must ensure that support s e r v i c e s are a v a i l a b l e a c c e s s i b l e to s t a f f nurses who  and  work under these  circumstances. Nursing Education Nurses o f t e n use the p r i n c i p l e s of teaching  and  has or  l e a r n i n g , e s p e c i a l l y when g i v i n g For example, nurses may  educate  i n f o r m a t i o n about  HIV.  t h e i r peers, other  health-care workers, non-health  care workers, and  members of the general p u b l i c .  Because many i n d i v i d u a l s  r e l y on the media and word of mouth f o r i n f o r m a t i o n about HIV,  nurses must c l a r i f y m i s i n f o r m a t i o n .  Education and c o u n s e l i n g are r e q u i r e d i n c l i n i c s where HIV antibody t e s t i n g i s done.  Nurses who  areas must be e d u c a t i o n a l l y prepared or make c l i e n t r e f e r r a l s . for p a t i e n t s who  work i n these  to teach, c o u n s e l ,  This i s e s p e c i a l l y relevant  t e s t s e r o p o s i t i v e , although f a m i l y  members or l o v e r ( s ) may  a l s o b e n e f i t from  these  services. Research support  s t u d i e s confirm the importance  (see Chapter  Two).  of s o c i a l  Nurse educators must focus  a t t e n t i o n on the c l i e n t w i t h i n the context of h i s s o c i a l system.  Then, n u r s i n g students can l e a r n to plan and  implement p a t i e n t s ' care w i t h i n the context of h i s e x i s t i n g support  system.  Nursing education programs must provide students the o p p o r t u n i t y to express and examine t h e i r  own  f e e l i n g s about i s s u e s r e l a t e d to c a r i n g f o r HIV patients support.  (Okamoto, 1988)  and t h e i r a v a i l a b l e  infected  social  Then these students w i l l be b e t t e r able to  provide q u a l i t y n u r s i n g care f o r these  individuals.  Nursing education programs must a l s o address  the  importance  of communication s k i l l s .  p a t i e n t s who p e r c e i v e themselves  To d e a l with  as  under-supported,  students must have had o p p o r t u n i t i e s to develop t h e r a p e u t i c communication s k i l l s .  Although  these  p a t i e n t s may not be easy to reach and thus d i f f i c u l t to make meaningful  contact with, they may have the g r e a t e s t  need f o r s o c i a l  support.  Nursing  Research  Nursing r e s e a r c h provides a f i r m foundation f o r a l l areas of n u r s i n g p r a c t i c e and education.  Unfortunately,  nursing research r e g a r d i n g s o c i a l support a v a i l a b l e to HIV antibody p o s i t i v e  individuals  i s very  limited.  Therefore, f u r t h e r r e s e a r c h on t h i s s u b j e c t i s recommended. Further r e s e a r c h would be u s e f u l i n s u b s t a n t i a t i n g the f i n d i n g s d i s c u s s e d i n t h i s t h e s i s .  First,  r e p l i c a t i o n of t h i s study i s recommended because of the small convenience  sample used.  The second  recommendation r e l a t e s to the measurement of s o c i a l support.  T h i s researcher experienced some d i f f i c u l t y  a n a l y z i n g NSSQ data r e g a r d i n g l o s s of s o c i a l network members.  Another area the NSSQ does not f u l l y  i s Kahn's idea of an i n d i v i d u a l g i v i n g s o c i a l  address support  (Kahn, 1979), although he i d e n t i f i e s t h i s as being part of an i n d i v i d u a l ' s convoy. which i s based  S p e c i f i c a l l y , the NSSQ,  on Kahn's ideas, focuses l a r g e l y on  subjects* little  r e c e i v i n g s o c i a l support  on g i v i n g s o c i a l support  Therefore, a q u a l i t a t i v e  (questions 1 - 6 )  and  (question 8).  i n v e s t i g a t i o n or use of another  q u a n t i t a t i v e t o o l to measure l o s s - o f s o c i a l  support  would be of v a l u e . This researcher examined a group of 20 - 49 year o l d homosexual males.  Others  i n high r i s k groups such  as haemophiliacs, b i s e x u a l s , intravenous drug H a i t i a n s , sexual p a r t n e r s of those as w e l l as males and groups,  females  need to be s t u d i e d .  i n high r i s k  groups,  i n other c u l t u r a l and Another  age  group not  represented i n t h i s study were those who seronegative.  abusers,  had  tested  S o c i a l support a v a i l a b l e to these groups  as w e l l as the groups s t u d i e d , must be considered when planning c l i e n t care and s o c i a l support programs. This study examined s o c i a l support a v a i l a b l e to research s u b j e c t s a t a p o i n t i n time.  Further r e s e a r c h  i s recommended to address changes i n the a v a i l a b i l i t y of s o c i a l support.  For example, a l o n g i t u d i n a l study would  provide h e a l t h c a r e workers with an idea of the h i g h e s t period of c l i e n t v u l n e r a b i l i t y , based a v a i l a b l e to him.  on s o c i a l  support  The c l i e n t ' s s o c i a l support could  a l s o be assessed i n r e l a t i o n to h i s disease p r o g r e s s i o n from t e s t i n g antibody p o s i t i v e to ARC finally,  f u l l - b l o w n AIDS.  One  may  d i a g n o s i s and  hypothesize that the  i n d i v i d u a l ' s e x i s t i n g s o c i a l support would d i m i n i s h over  time.  If t h i s were the case, the researcher could  measure the person's support  p e r c e p t i o n of changes i n h i s s o c i a l  i n r e l a t i o n to being  home care s e r v i c e s . i n planning new  i n h o s p i t a l or r e c e i v i n g  This i n f o r m a t i o n would be v a l u a b l e  support s e r v i c e s and  evaluating existing  ones. Research s u b j e c t s for t h i s study were from the lower mainland of B r i t i s h Columbia and p o r t i o n of Vancouver I s l a n d .  the  southern  In these areas, there i s a  r e l a t i v e l y large homosexual community which may source  of s o c i a l support.  be a  Further r e s e a r c h i s needed to  assess s o c i a l support a v a i l a b l e to s i m i l a r groups i n other geographical l o c a t i o n s where t h i s source support  of  i s less evident.  Nurses are concerned cope with i l l n e s s .  with c l i e n t s ' a b i l i t i e s  to  Research i s r e q u i r e d to determine i f  c l i e n t s ' perceptions o£ s o c i a l support are r e l a t e d to t h e i r a b i l i t i e s to cope with HIV  infection.  s t r a t e g i e s are enhanced i n the presence  If coping  of s o c i a l  support, what nursing a c t i o n s would augment the e x i s t i n g support  system?  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Hastings Center Report, 17 ( 1 ) , 22-23.  A p p e n d i x A:  The  Norbeck  Social  Support  Questionnaire  Number  NSSQ Scoring Inuructli  (  HIV Status: Known p o s i t i v e Not known To enable us to compare the results of this study with people from different groups and situations, we would like some additional information about your background. Please complete the following items.  1. Z  AGE.  l»-4|  SEX . 1 . male . 2 . female  3.  MARITAL STATUS 1. single, never married 2. married 3. divorced or separated 4. widowed  5. other (specify) 4.  EDUCATIONAL L E V E L  t»-JOI  What is the highest grade of regular school that y o u completed? (Circle one) Grade School 1 5.  2  3  4  5  6  High School 7  8  9  10  71  College 12  ETHNIC B A C K G R O U N D  13  14  15  Graduate School 16  17  18  19  20  21  22 ,„,  Asian 1 Black 3. Caucasian 4. Hispanic 5. Native American 6. Other (Specify)  6. RELIGIOUS P R E F E R E N C E 1. Protestant (Specify) 2. Catholic 3. Jewish 4. Other (Specify) S.None  7. PARTICIPATION IN R E L I G I O U S A C T I V I T I E S _ 1 . Inactive —  2. Infrequent Participation (1-2 times a year) * Occasional Participation (about monthly) 4. Regular Participation (weekly)  ,,„  SOCIAL SUPPORT QUESTIONNAIRE PLEASE READ ALL DIRECTIONS ON THIS PA GE BEFORE STA R TING.  Please list each significant person in your life. Consider all the persons who provide personal support for you or who are important to you. Use only first names or initials, and then indicate the relationship, as in the following example: Example: First Name or Initials 2  'BcVES  Relationship 'g>F.o>TU e.R.  3. _  4. _ etc. Use the following list to help you think of the people important to you, and list as many people as apply in your case. — spouse or partner — family members or relatives — friends — work or school associates — neighbors — health care providers — counselor or therapist — minister/priest/rabbi — other You do not have to use all 24 spaces. Use as many spaces as you have important persons in your life. WHEN YOU HA VE FINISHED YOUR LIST, PLEASE TURN TO PAGE 2. 01980 by jane S. Norbeck, OJiSc.  University of California, San Francisco  Number Daw  92  PERSONAL NETWORK  First Name or Initials  I f you a r e HIV antibody p o s i t i v e , ( s ) h e knows t h i s .  Relationship  Yes 1 2 3 4 5 6 7. 8. 9 10 11 12 13 14. 15 16 17. 18 19 20. 21 22. 23 24 (MI  (M)  : ;  . (331  . 13*1 ;  '.—  (MI (*»1  on (MI  ;  oti (401  ;  (411  (4*1  (4,1 (441 (4S1  '.  ;  (4<1 (47|  ;  (4$1  ',  .  (4tl  ,  .(Ml  .  mi (Ul  ;  IUI  (MI  (»»i  No  For each person you listed, please answer the following questions by writing in the number that applies. 1 = not at all 2 — a little 3 = moderately 4 - quite a bit 5 = a great deal Question 1:  Question 2:  How much does this person make you feel liked or loved?  How much does this person make you feel respected or admired?  1  —  2  3. _ _  4. _  ,  5. 6.  ;  14  "  4. _  5.. 6. 7  :  9.; 10.  ;  .  12. :  13  :  .  ;;  14  15 16.  17".  17 .  ;  18.  19 20. 21  :  :  22 23 24  ;  11  :  16 18  .  8  11 12 13  .  :  7  8. 9 10  ;  2.  ;  3. _ '  i  _ ,  s  19 20 21 22. 23. 24.  : ; _  1 = not at all 2 = a little 3 = moderately 4 = quitc.a bit 5 = a great deal Question 3:  Question 4:  How much can you confide in this person?  How much does this person agree with or support your actions or thoughts?  1. 2. 3.  1. 2. 3.  4.  4.  5.  5.  6.  6.  7.. 8.. 9.. 10.. 11.. 12.. 13.. 14.. 15.. 16:. 17.. 18.. 19.. 20.. 21.. 22.. 23.. 24;.  7. 8. 9. 10. 11.. 12.. 13.. 14.. 15.. 16.. 17.. 18.. 19.. 20.. 21.. 22.. 23.. 24..  1 = not at all 2 = a little 3 = moderately 4 = quite a bit 5 = a great deal Question 6:  Question 5:  I f you needed to borrow $ 10, a ride If you were confined to bed for several weeks, how much could' to the doctor, or some other immediate help, how much could this person help you? this person usually help? 1. 2.  1 2 3  ;—  4  ;  5 6  :  7 a.  ;  9  ;  io  ;  12  ;  13 14  ;  15 "16 17  7. .  ;  n  :  .  .  ;  18 19 20 21 22 23. 24  . :  3. 4. 5. 6. 8. 9. 10. 11. 12. 13. 14. 15.. 16.. 17.. 18.. 19.. 20.. 21.. '22... 23.. 24..  Question 7:  Question 8:  How long have you known this person?  How frequently do you usually have contact with this person? (Phone calls, visits, or letters)  1 = less than 6 months 2 = 6 to 12 months 3 = 1 to 2 years 4 = 2 to 5 years 5 = more than 5 years  5 = daily 4 = weekly 3 = monthly 2 = a few times a year 1 = once a year or less  1.. 2.. 3.. 4..  1. 2. 3. 4. 5.. 6.,  5.. 6.. 7..  7..  8..  8..  9.. 10.. 11.. 12.. 13.. 14.. 15. _ 16..  9.. 10.. 11.. 12.. 13.. 14.. 15.. 16.. 17.. 18.. 19.. 20.. 21.. 22.. 23.. 24..  17. _ 18. _ '19._ 20. _ 21. _ 22. _ 23.. 24..  PLEASE BE SURE YOU HA VE RA TED EA CH PERSON ON EVER Y QUESTION. GO ON TO THE LAST PAGE.  (2S-30)  9. During ihc past year, have you lost any important relationships due to moving, a job change, divorce or separation, death, or some other reason? 0. No I.Ycs  IF YES: 9a. Please indicate the number of persons from each category who are no spouse or partner family members or relatives friends work or school associates  longer available  to you. (S9-60) (61«2I l*3-«4) l**M>  health'care prnvirirrf  l«7J  counselor or therapist minister/priest/rabbi other (specify)  9b, Overall, how much of your support w'as provided by these people who arc no longer available to y o u ? 0 n n n * at nil 1 a little  _  2. a moderate amount . 3 . quite a bit  1701  Appendix B:  Notice of Study  RESEARCH SUBJECTS NEEDED Research s u b j e c t s are needed f o r a study i n which s o c i a l support w i l l be measured. There w i l l be two groups i n the study. One group w i l l be comprised of homosexual males, aged 20 to 49 y e a r s , who have been tested and confirmed antibody p o s i t i v e f o r the human immunodeficiency v i r u s (HIV). The other group w i l l include those who have not been t e s t e d and whose antibody s t a t u s i s not known. Subjects must not have been diagnosed as having AIDS and must l i v e outside an institution. A q u e s t i o n n a i r e w i l l be used to assess s o c i a l support. If you q u a l i f y f o r e i t h e r study group and are i n t e r e s t e d i n p a r t i c i p a t i n g i n t h i s study, q u e s t i o n n a i r e s may be picked up a t the o f f i c e s o f : AIDS Vancouver 509 - 1033 Davie Vancouver, BC  Street  Gays and Lesbians of UBC o f f i c e 237B Student Union B u i l d i n g U n i v e r s i t y of B r i t i s h Columbia West End Community Center 870 Denman S t r e e t Vancouver, BC AIDS Vancouver I s l a n d 1175 Cook S t r e e t V i c t o r i a , BC The r e c e p t i o n i s t at each o f f i c e w i l l d i r e c t you to pick up a packet which i n c l u d e s the q u e s t i o n n a i r e , an explanatory l e t t e r , and a stamped, addressed envelope. The packets for both study groups look i d e n t i c a l . Space i s provided on the q u e s t i o n n a i r e to i n d i c a t e your group. Thus, your group i d e n t i t y w i l l not be r e v e a l e d when you pick up a packet. The enclosed q u e s t i o n n a i r e w i l l take approximately 15 minutes to complete and i s to be mailed to t h i s researcher i n the addressed, stamped envelope provided.  A p p e n d i x C:  Letters  to  Agencies  Appendix  D:  Covering  Letter  for  the  NSSQ  Appendix E: Request Form  /  

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