T h e ex p er i e n ce s of p eo pl e li v in g w it h H I V / AI D S i n G ab o r on e , B o t sw a n a. V i nc e nt Se t l h a re A r es ea r c h r ep o rt s u b m i tt ed to th e F ac u l t y o f H ea l th Sc i e nc es , U n i v er s i t y o f t h e Wi twa t e rs ra nd , i n f ul fi l l m e n t o f t he r eq ui r eme n t s fo r t h e d eg r ee of M a s t er o f F a m i l y M ed i c i n e b y c o ur s e w o rk an d r es ea r c h re po rt .
D E C L A R A T I O N
I , D r. Vi nce n t S e tl har e de c l ar e t ha t t hi s re s ea rc h re p o rt i s my o w n w ork . I t i s be i n g s ub m i tt ed f o r th e d eg r e e of Ma s te r o f Fa m i l y M edi c i ne i n t he U n i v e rs i t y o f t he Wi twa t e rs ra nd , J oh a nne s bu r g. I t h a s no t b ee n s ub m i tte d b e fo r e f or a n y de g ree o r e x a m i n a ti on at th i s or an y o th e r U ni v e r s i t y .
……… …… … … …… . (S i gn atu r e of c andi date) … … … … . d a y o f …… … … ( m o n th ), 2 0 0 …
DEDICATION
T h i s wo rk i s d ed i c ate d t o m y w i f e w h o s a w t o i t t ha t I di d m y w o r k .
W i th o ut he r “e nc ou ra g e m en t ”, t hi s re p ort m a y no t h a v e b e en w r i t t en . Th i s w o r k i s a l s o d ed i c ate d t o m y pa r ent s . T ho u gh th e y w e r e p oo r w o rk i n g c l a s s f ol k i n t he to wn s hi ps , al l I a m , I owe i t t o t he m .
TABLE OF CONTENTS
DECLARATION………... 2 DEDICATION……….. 3 TOC………... 4 ABSTRACT………. 6 ACKNOWLEGEMENTS………...8 CHAPTER 1: INTRODUCTION………... 9CHAPTER 2: LITERATURE REVIEW………. 11
Stigma……….. 11
Psychiatric, psychological, and emotional issues………... 12
Unemployment………... 12
Food and Nutrition……… 13
Poverty………. 13
Relationships………... 14
Adherence to treatment………... 14
Spirituality………14
Companionship of other PLWHA……….. 15
Social phobia, isolation and reclusiveness………15
Similar studies………15 CHAPTER 3: METHODS……….. 17 Study design………... 17 Site of study……… 17 Study population………18 Sampling……….. 18
Measuring tool or instrument……… 19
Ethics……… 20 Pilot study……… 21 Data collection……… 22 Analysis……… 23 Limitations………. 24 CHAPTER 4: RESULTS……….. 26
Demographic profiles of interviewees………... 26
Psycho-emotional matters………. 29
a. bewilderment……….. 29
b. sleep disorders……….. 30
c. the torment of thoughts……….. 30
d. delusions and wrong thinking……….. 31
e. social phobia and reclusiveness……….. 32
f. anxiety and depression……….……….. 33
g. spirituality……… 34
h. meaningful support from other PLWHA……….. 35
Stigma and discrimination………. 35
Work related issues………. 37
Life after stopping work……….. 38
Food………..……… 39
Relationships………. 41
How interviewees experience the disease HIV/AIDS……….. 42
Concern about children………... 45
Caregivers and social workers………. 46
CHAPTER 5: DISCUSSION……… 49
Demographics………..………... 49
The company of other PLWHA………... 54
Stigma and discrimination………. 54
Work related issues………. 54
Life after stopping work……….. 55
Food………..……… 55
Relationships………. 56
How interviewees experience the disease HIV/AIDS……….. 57
Concern about children………... 57
Caregivers and social workers………. 58
CHAPTER 6: CONCLUSION AND RECOMMENDATIONS……….. 61
REFERENCES……… 66
APPENDICES:……….69
1. Human Research Ethics Committee clearance certificate……… 69
2. Letter to the Permanent Secretary Ministry of Health, Botswana……….. 70
3. Ministry of Health, Botswana, clearance letter………. 71
4. Letter to the Director, Holly Cross Hospice……….. 72
5. Contents of pre-interview information given to participants……… 73
6. Sample of questions used to collect demographic data……… 74
7. Themes of what interviews said……… 75
8. Unedited transcripts (available on request)
A B S T R A C T S t u d y A i m a nd O bj e c ti ve s : T h e a i m of th e s tu dy w a s t o exp l o re w ha t i t m e a ns to h a v e H I V / A I D S i n G a b o ro n e, B o ts w an a. Th e s tu dy d e s c ri bes th e d e mo g r ap hi c an d s oc i o -e c on o m i c c i r c u m s tan c -es o f t h-e pa r ti c i pa n ts . I t als o -e l i c i t s a n d -e x pl o r-e s t h e e x p er i e n c e s of pe o pl e l i v i ng w i t h H I V/ A I D S i n G a b o ro n e, B o ts w an a. M e t h o ds I n te r v i e wee s we r e pu r p os el y s e l ec te d f ro m a h os pi c e , a n NG O a n d a c h urch t h at mi nis t ers t o PL W HA. In de pth in te rvi ews were co n du ct e d a n d r e c o r de d b y a ud i o t ap e . T he i nt e r v i e w s we r e c on duc t ed i n S et s w an a a nd t h e i n t er v i e w e es re s p o nd e d t o a s ta t e m en t , w hi c h e s s e nt i a l l y w a s , “ Tel l m e a bo u t y o u r l i f e s i nc e y ou k n e w y ou ha d H IV / A ID S ” . Th e a u di o r e c o r di ng s w e r e t ra ns c r i b e d i n to E ng l i s h . C a r e w as t ak en to c a rr y t he S e ts w a na w a y o f s pe a k i ng d i re c tl y i nt o E n g l i s h . A t he m a ti c a n al y s i s of t h e t ra ns c r i pt s w as m a d e . A m o d i fi ed c u t a n d p as t e m et h od w a s us ed t o g a th e r t he i nf o r m at i o n i nt o i ts v a r i o us th e m e s . R e s u lt s T h e re w ere 15 i n te rvi e w e es . T h ei r a v e ra g e a ge wa s 3 5. 3 y ea r s a nd on a v e r a ge , th e y ha d 1 .6 c h i l dr e n e ac h. The y w e r e un e m p l o y ed . T h e i nt er v i e w ee s des c r i b e d a w i d e r an ge of e x pe ri e nc es , wh i c h we r e n o t n e c e s s a r i l y e x p e ri enc e d b y a l l . T h ei r n a rra t i v es d es c ri b ed th e p h y s i c al s y m p t o m s t he y s u f fe r e d. T h ey d e s c ri be d s ti g m a a nd di s c ri m i n a ti on th at th e y w ent th r ou g h. T h e y g a v e a c c o un ts o f p s yc h ol o g i c al a nd e m o ti on al t u r m oil . Ps y c hi at ri c p r o bl e ms w e r e c i t ed. Th e y w ere v e r y c onc e rn e d tha t t h e y c ou l d no l o ng e r s up por t t h ei r c hi l dr e n . Th e y a l s o wo r ri e d a b ou t w h a t wo uld ha p pe n t o t h ei r c hi l d r en wh e n t he y di e d.
As t h ei r dis e as e prog res se d, th e y lo st t he i r jo bs an d were re d uc ed to p o v e r t y. Th e y c o ul d n o l on g er s u pp o rt t he m s el v e s a n d t he i r d e pe n de n ts . T h e y d e pen d ed on re l at i v es , fr i en ds , NG O s a nd g o v e r n m en t f o r r el i ef . R e l i e f f rom f r i e n ds a n d r el at i v e s w as of t en no t ava i l a bl e . Th e y s u ff e re d h u ng e r, as th e y c oul d n ot s a tis f y t h ei r i n c re as ed a p pe ti t es a f te r t h e y s t ar te d ARV d r ug th e r ap y . T h ei r r el a ti o ns hi ps we r e d i s ru pt e d w h en th e y go t i l l . S po us es a nd fr i e nd s l e ft a n d s o m e r el at i v e s an d f ri e nd s s t i gm a t i s e d the m .
I n te r v i e wee s we r e tak e n c a re of b y r el a tiv e s , f ri end s , he al t h
p r o fe s s i ona l s , N G Os, an d s oc i a l wo rk e rs . In all th es e c at eg o ri es , t he r e w e r e g oo d a nd ba d c a r e g i v er s e x c ep t t he ho s p i c e a n d c h u rc h , w hi c h we re re port e d as g oo d c a re gi ve rs. Care gi ve r f at i gue was d esc ri b ed .
S o m e i n ter v i e w ee s fo u nd c o m fo r t i n G o d. Th e y be l i e v e d th a t H e k no w s w h a t t he y a r e g oi ng t h r ou gh an d wi l l t ak e c a r e of th e m . T h e i n te r v i e w ee s a l s o f ou n d c o m fo rt an d h e al i n g f r o m t he c o m p an i on s hi p of ot h e r P LWHA . T h e i nt er v i e w ee s w an t ed to f i nd j o bs a n d w o rk s o th a t t he y c o u l d s up po r t t h e m s e l v es an d t he i r d ep en d en t s . T h e y w i s h e d gove r n m e n t w o u l d tr ain t h e m a n d f i nd t h e m j o bs . C o n c lu sio n T h e st u d y c o nf irme d t h e ps yc ho -e mo ti ona l p r ob le ms an d co nc e rn f o r c hi l d r en fe l t b y PLW H A , t h at t he l i t e ra tu r e r e v ea l e d . I t s h owe d th e p h y s i c a l pr o bl e m s t he y a l s o s uf f e r. T h e s t u d y r e v e al e d th a t i nt e r v i e w e es l os t j ob s an d b ec a me de s t i t u te . T h e y c ou l d no t s at i s f y t h ei r i nc r ea s e d a p pe ti t es a f te r t h e y s t ar te d ARV d r ug th e r ap y . I nt e r v i e w e es ’ r el at i o ns hi ps w e r e d i s rup t ed w he n t he y g ot i l l . S po us es an d f ri en d s l e ft an d s o m e r e l a ti v e s di d n ot tr e at th e m w el l . T he r e we r e g oo d a n d b ad c a r e g i v er s i n d i ff e re nt c a t eg o ri es . T he A fr i c a n c us to m o f b ot h o/u b un t u s ee m s to b e s uc c u m b i n g t o t h e o n s l au gh t o f HI V / A ID S . T h e s t u d y s h o we d t ha t i nt e r v i ew e e s fo u nd c o m f or t a n d s u p por t fr o m f a m i l y , fr i e n ds , N G O ’ s a nd the c h u rc h . T h e y f o und G o d a nd o th e r P LW H A e s pe c i all y v a l ua bl e s u pp o rt s ys t e ms . I t wa s e nc o u r ag i n g to no ti c e th a t s o m e i n t e r vi e w ee s f el t t hat w i t h ti m e, s ti g m a tis at i on o f PLW H A i s g ra d ua l l y s ub s i di n g.
ACKNOWLEDGEMENTS
I w o ul d l i k e to th a nk t he fo l l o wi n g pe o pl e a nd or g an i s a ti on s fo r th ei r a ss is ta nce .
D r . A nn e W r i g h t of th e F ac ul t y o f H e al th S c i e nc es , U n i v e rs i t y o f t he W i t wa t er s r a n d, s upe r v i s e d m e an d e nc o u r ag ed m e . S he m a d e m e b e l i e v e t h at I co uld do re sea r ch an d wri te up a re po rt .
T h e M i ni s tr y o f H e al th , G o v er nm e n t o f Bo t s wa na , a s s es s e d m y p r o to c o l a n d k i nd l y g a v e p ermi s s i o n t o d o t he res e ar c h i n B o ts w a na . T h e H o l y C r o s s Ho s p i c e ( D r . Cyn t h i a Bow a a nd M rs . J o s e p hi n e M ak at e) , t h e O l d Na l ed i B ap ti s t C hu rc h ( R e v . M po p an g ) a nd M a tl o G o S ha M ab a pi ( M r s .L e aba n en g M as e di ) k i nd l y a l l o w ed m e a c c es s to t h e pe o pl e t he y a r e c a ri ng fo r. M s . O nt l ame t s e Tu tu m p a ne an d m y w i fe J o y c e t yp e d t he res e ar c h i n te r v ie w s . L a s t b u t no t l ea s t I w o u l d l i k e t o t ha nk th e I n te r v i e w e es t h ems e l v es . T h e y a l l o w ed me i n to th eir w o rl d. Th i s w as a s p eci al e xp e ri e nc e.
CHAPTER 1: INTRODUCTION I n 1 9 95 , M i c ha el et a l1 w r ot e th a t H I V / AID S w a s p ro b ab l y t h e m o s t i m p o rt a nt i t e m o n t he he al t h ag e nd a a t th a t ti m e . A c c o r di ng t o t he m , i t w a s t he l ea d i n g c a us e o f d ea th i n a d ul ts u nd e r t he a ge of f o rt y - f i v e and i n c hi l d re n b el o w f i ve y e a rs o f a ge . T hi s i s th e pi c t u r e i n Sou t he r n A f ri c a , i nc l u di n g B o ts w a na , t od a y . T h e re a r e 4 0 ,3 m i l l i on P LW H A w o r l d wi de , a c c or di n g t o U N AI D S / W H O A I D S ep i de m i c u pd at e 2 0 052. Th e s a m e re p o rt s a ys t ha t t he s e nu m b e rs a r e i nc re as i n g i n al l r e gi o ns o f t he w or l d e x c ep t t he C a ri bb ea n . T he s a d f a c t i s th at , a l t h ou gh on l y 1 0% of th e wo r l d ’ s p o pu l at i o n l i v e i n s ub -S a h a ra n Af r i c a, 6 0 % o f P L W HA a r e fo u nd i n t hi s re g i o n2. T he s a m e s o ur c e re v e a l s t ha t th e e pi d e mi c d oe s not s e e m t o b e d ec l i ni n g i n t hi s r e gi o n e xc e p t i n Zi mb a b w e. Da t a g at h ere d f r o m Bo t s wa na s e e m s t o i n dic a te t ha t t h e p reva l e nc e rat e i s c o m i n g d o w n i n B ot s wa na3
S o u th e rn A f r i c a i s ho m e to 2% of th e gl o ba l p op ul a ti on b u t i t c ar ri es m o s t o f t h e H I V b u rd en of t he w or l d a c c or di ng t o H al p er i n an d Ep s t e i n4. T he y a r g ue t h at p r o mi s c ui t y i n th i s re g i o n i s t he s a m e a s i n ot h er l e s s af fe c te d r e gi o ns . Th e y al s o ar g u e th a t c i r c u m c i s i o n ra te s i n m e n c a nn o t b e a f a c t or be c a u s e o t her r eg i o ns w i t h l o w ma l e c i rc u mc i s i o n r at es ha v e n o t s u ff er e d as m uc h. Th e y po s i t th a t i t i s t he ha bi t o f h a v i ng m or e th an one s e x u al p art n e r c o nc ur r e nt l y t hat m a k es So u th e rn A fr i c a t o b e s o a ff l i c t ed . T h e p ar ti c i p an t i n on e s e x ua l c i r c l e c o nn e c t s to ot h e r c i rcl es s o t ha t a n e t w or k of i nt e rc on ne c ti ng s e xu a l g ro up s i s c r ea ted . I t i s th en ea s y f o r o n e o r a fe w i n di v i du a l s i n th e h i g hl y i n fe c ti v e s t ag e o f t h e d i s e as e to a f fe ct hu nd re ds o f ot h e rs. P r o bl e m s h a v e b e en c i t ed a b ou t AI D S s ta t i s tic al da t a f ro m So u th e rn A f r i c a2. Th i s da ta i s g at h er e d f r o m w o me n a t te n di n g a n te na t al c l i ni c s , a n d i s t h er e f or e f rom w o m e n o f re pr o duc ti v e c ap ab i l i t y w h o e n ga g e i n u n p ro te c te d s e x . T hi s e x c l ud es m al es an d o t he r fe m a l es . Da t a f ro m h o us eh ol d s ur v e y s ha v e hi gh no n - re s p ons e a nd abs e nc e ra t es2. D es pi te t h es e p rob l e ms , n ec es s a r y mo d i f i c at i o ns of d a ta g a th e re d i n th i s m ann e r e n ab l e us t o a c c ep t t h e d at a as th e b es t e s t i m at e o f t h e e pi d e m i c th at w e h a v e . T he d at a i nd i c a t e t ha t t he r e a r e m i l l i on s o f PL W H A i n s u b Sa h ar an Africa. B o ts w a na i s a r el a tiv e l y s m al l c ou nt r y i n s o ut h ern A fr i c a. It ha s a p o pu l at i o n o f a bo u t 1 . 7 m i l l i o n3. T h e D ep a r t m en t o f HI V / A ID S P r e v en t i o n a n d C a re , r e p or ts t ha t HI V / A ID S w a s fi rs t r ec og ni s e d i n Bo ts w a na i n 1 9 853. It al so i n fo rms us t ha t , t o da y, 33 .5 % of p r eg n an t wome n in B o ts w a na a r e HI V po s i ti v e . Ac c o r di ng to th e o ff i c i al go v e r nm e n t n e w s p a per , D ai l y Ne w s , 68 , 44 0 p eo pl e w e r e on th e g o v e rnme n t
s p on so re d a nt i re tro vi r al (ARV) d r ug t r ea tme n t p r ogra mme a nd 11 . 2% of t h os e el ig ib l e fo r t r ea t me nt had ye t t o be en rol le d i n th e p r og ra mme5. T o d a y t he n u m be r of P LW H A i n B ot s wa na fa r e x c ee d s th e 2 85 , 00 0 U N A I D S es ti m a t e of 2 00 23. T hi s i s b ec au s e th e re h a s no t b ee n a
s i g ni fi c a n t r e du c t i o n i n i n fe c t i o n ra te s an d l es s peo p l e a r e dyi n g o f A ID S b e c a us e of th e g o v er n m e n t ARV t r ea t me n t p ro g ram m e . T hes e p r oj ect i o n s w e r e m ade be f or e th e g o v e rnme n t h a d a d op t ed a p ol i c y of f r e e A R V t r e at m e nt f o r c i ti z e ns of Bo ts wa n a.
T h us t h ere a re m any p e op l e i n B ot s wa na l i v i n g wit h HI V / A ID S . W e ne e d t o k no w ho w t hes e p e op l e li ve , h o w t h ey t ak e t h eir me di ci nes , h o w t hey v i e w pr o gra m m e s tha t a r e m ea n t t o h el p th e m , wh a t t he y th i nk c ou l d b e i m p r o v ed o r dis c a r de d i n t he fi g ht a g ai ns t HI V / AI DS a nd a ho s t of ot he r t h i n gs p e rt a i n i n g t o H I V / A I D S. T hi s k n owl e dg e wou l d no t o nl y i n f or m HI V/ AI DS p r oj ec ts , it wo ul d als o mak e fo r re ci pi en t f r ie nd l y p r og ra mme s t h at wou ld re ali ze be t te r val ue fo r mone y s pe nt .
B o l to n a nd M i l k r epo r t t ha t n ot m u c h r es e a rc h h as b e en do n e o n h o w a f fe c t e d c o m m u n i ti es th e ms e l v e s pe rc eiv e t he i m pa c t of th e H I V
epidemic6. T h e s a m e a u th o rs po i nt t o t h e n ee d f o r m o r e re s ea r c h on ho w l oc al pe opl e p e rc ei ve th e i m p ac t o f H I V /A I D S on th e i r l i v es . T hi s i s
c r uci al fo r t he pl an ni n g an d i mp l e m en ta tio n o f a p pro p ri a te h ea l th a n d s oc ia l ca re7. H o we v er w el l i n t en t i o ne d p ro g r a m m es a r e, t h e y n e ed a b a c k bo ne o f res e ar c h . R es e a rc h p r o vi des da ta th at fo r m s t he ba s i s for g o od de c i s i o ns . Whe n s uc h da t a i s l ac k i n g, m i s tak es m a y be m a de . U n f o rt un a te l y H I V/ A ID S i s un for g i vi n g a nd e v e r y e rr o r i n th e f i gh t a ga i n s t i t is pu ni sh e d b y more i n fe ct ion , mo re t ra n s mi ssi on , mo re d is e as e an d mo re de ath s .
T h e p ur p os e o f t hi s s t ud y w as t o fi n d o ut ho w pe op l e l i v i n g w i t h H I V/ AI D S ( P L W H A ) l i v e th ei r da y - t o -d a y l i v es . T hi s w a s do n e b y l i s te n i n g t o t h e P L W H A rel a te t h ei r e x p e ri e nce s .
C H A P T E R 2 : L I T E RAT U R E RE V I E W
I n Bo ts w an a s o m e re s ea rc h ha s b ee n do n e o n t he v a ri o us a s pe c ts of H I V / A I D S b u t a l ot s t i l l n ee ds t o b e d o ne . A r ep o rt e r f or a l o c al
n e wsp a per, qu ot es Pro f ess o r T o r to , a pro f ess o r of an al yt ic al c h e mi st ry a t t h e U n i ve rs i t y of B ots w a na a s s a y i n g , i n c o nn ec ti on w i t h A I DS r es ea r c h , “ . . . to th e b e s t o f m y k no w l e dge , a s s c i en t i s ts a t th e U ni v e rs i t y of B o ts w a na , w e ar e w a t c h i n g f ro m t he s ide li n es … ..a s i t w as c le a rl y s t at e d ( a t t he J oh a nn es b urg W or l d Su m m i t ) , a n a ti on w i th a p ro bl em s h ou l d l e a d i n f in di n g i ts s ol ut i on8. ” T h e re i s a s ub s t an ti a l b od y o f k no w l e dge th a t r es e a rc h h as b r o ug ht to l i g h t w i t h r e s p ec t t o P L W H A. T h i s k no wl e dg e i nc l u d es i s s ue s p e rt ai ni n g t o s ti g m a a n d di s c rim i n a ti on , p o v e r t y a nd j o bl es s ne s s , e m o ti o n al a n d p s ych ol ogi ca l iss u es , ca reg i ve r an d rela t io ns hi p is su es ’ and a h os t of o t he r d a ta. Stigma S t i g m a has be en des c r i b e d as t ha t q u al i t y t ha t s i gn i fi c a nt l y d i s c r e di ts a n i n di v i d u al i n t he e y es of o t he rs9. P os el wr i te s th a t i t i s a vi s i bl e m ar k b o r ne b y a n i nd i v i du a l , w hi c h i s ne ga ti v e l y v al u ed b y th e g ro u p o f w hi c h t h e i n di v i du a l i s a me m b e r10. In c o nn ec ti on wit h AI DS, s h e el ab o r at es ho w b o di l y d ec a y a nd s ee p ag e o f fa e c e s , b l oo d a n d p us fr o m a n A I D S pa tie n t w o u l d na tu r al l y e l i c i t s t ro n g r ea c ti on s1 0. T h es e r eac ti o ns i nc l u d e di s g us t o n t h e p art of th os e w h o do n ot ha v e A I DS t o s h a me on th e pa r t o f t ho s e w h o ha v e i t , s h e w r i t e s . T h us s ti g m a s ets AI D S apa r t f ro m o th e r t er m i na l d i s e as es a n d i s d e fi n e d as a m a r k o f s ha m e o r di s c r ed i t11. A n d e rs o n a n d D o y al7, i n t he i r s t ud y of Af r i c an w om e n l i v i n g w i th H IV i n L o nd o n, s h o w e d th at H I V/ A I DS i s a v e ry s ti g m at i s i n g c on di t i on . A s t he s t ud y s h owe d , t hi s s ti g m a c ou l d be du e t o t he n eg a ti v e a n d s oc i al l y u n ac c e pt ab l e be h a vi o u r t ha t ha s b ee n as s o c i at ed w i t h H I V/ AI D S , l i k e p r os ti t ut i on an d p r omi s c ui t y . H o m o s e x ua l i t y an d dr u g u s e a re s o m e o f t h e o t he r n e ga t i v e s oc i a l b eh a v i ou r s th a t ha v e be e n a s s oc i a ted w i t h t he c o nd i t i o n a c c o rd i n g t o t h e U NA I D S re p or t on s ti gm a a nd dis c r i m i n at i o n2. K n o x , Da v i s a nd F r i e d ri c h ha ve al s o c onn e c t ed th e s ti g m a of H I V / AI D S t o t h e f ac t tha t i n t he be g i n ni n g, H I V / A I D S w a s d i s pro p o rt i o na te l y s e en i n s ti g m a tis ed g ro up s1.
St i g ma lea d s to disc ri mi na ti on ag ai ns t PL W HA an d a cc ordin g t o t h e s a me U N A I D S re p o rt , t hi s i s ha pp e ni n g i n a l l re g i o ns a nd i n a l l c ou n t ri es .
U N A I D S re p o rt s th at th i s d i s c r i m i na ti on i s s ee n i n h os pi ta l s , s c h oo l s , th e w o r k p l a c e, an d t h at e v e n t h e ri g ht t o m ar r y m a y be de ni e d P L H W A . Bo e r a n d E m o ns re p or t t ha t s ti g m at i s i n g re act io n s in cl ude a p ercep t io n o f h i gh e r ri s k fr o m c as u a l c o nt act12. T h us s ha k i n g ha nd s o r h ugg i ng PL WHA m a y b e d ee m e d t o exp o s e on e t o i n f ec ti o n wi t h H IV . Th e y rep o r t th a t P L W H A a re bl a m ed fo r th ei r c on d i t i o n a nd th e re i s i nc r ea s e d s u pp o rt f or p o l i c i e s t o r es t ric t t he i r f re e dom. A n de rso n a n d D oy a l fo un d t h at H I V p o s i ti v e wo m e n a r e r e j e c t e d by t h ei r h us b an ds o r p a r tn e rs , e v i c t e d fro m t h ei r h o me s , re f us ed c o nt ac t w i t h c h i l dre n , a nd the ut e ns i l s t h e y u s e ar e m a r k ed or g i v en s pec i a l w as hi n g . L et a mo ’ s s tu d y i n B ot s wa na al s o s h o we d t he e x i s t e nce of th e be l i e f th a t o n e c a n ge t HI V / A ID S f r o m s h ar i n g a m e a l wi th P L W H A13.
K g a k o l e fo u nd th a t i n Bo ts w an a , s t i g m a i s pr es ent i n h e al th f ac i l i ti es , f a m i l i e s , an d c o m m un i ti es14. H i s s tu d y s hows th at P LW H A a re i s ol a te d i n t h ei r o w n f a m i l i e s an d a t s oc i a l f un ct io ns . Kg ak ol e’ s wo rk a ls o s ho wed t h at w o m en a re d i s pr o p or ti o nat e l y b l a m ed fo r HI V /A I D S an d t h at th ei r p a r tn e rs an d f a mil ies als o rej ec t t he m. In th ei r s tud y i n In di a, on th e c o pi ng p a tt e r ns o f s e r o po s i ti ve w i v es o f m e n wi t h H I V / A I D S, J os ep h an d B h a tt i f oun d t h at t he w o m e n w e r e b l a m e d f o r i n f ec ti n g th ei r h us ba n ds , t h e y s uf f er e d i nt r a ma r i t al c o mmu n i c a ti on b re ak down , t h e y ha d d i f fi c u l t y i n m a i n ta i n i ng th ei r s oc i a l n et w or k , an d a h o s t o f o th e r p r ob l em s d ue t o s ti g m a a nd di s c ri m i n a ti on15. P s yc h i a t ri c , p s yc h o l o gi ca l an d em o tio n a l is s ue s I t i s th e re fo r e n ot s ur p ri s i ng tha t PL W H A h a v e ps y c h ol og i c al , e m ot i o n al a n d ps y c hi a tr i c p r obl e m s16, 7 , 17. Amo n g o t her t hi ng s , th e s e s tu di e s s ho w t h at P LWHA s uf fe r i n to l e r ab l e l e v e l s o f s el f bl a me , d i f fi c u l ty i n re me mb e ri n g o r co nc e nt r at in g, hi gh l e v el s o f ps y c h o l o gi c a l d i s t re s s , p s y c h o -n eu r ol o gi c al s y m p t o m s a nd de p re s s i o n . Thi s k i nd of s u ff er i ng i s b e s t e x p r es s e d b y PL W H A th ems e l v es . O n e m a n d i s c o v e r ed th a t h e h a d H I V / A I D S a f te r h i s wi f e an d s on ha d d i e d o f t he d i s e a s e18. T hi s m a n ’ s wi fe h a d n e v er d i s c l o s e d t o hi m a nd he c la i ms he wa s a fa i t h fu l h u s b an d . T h i s i s w h at t he m a n s a i d ab o ut his s i t ua ti o n. “ I a m i n g r e at p ai n. M y h ea r t a c he s te r ri bl y . M y wi f e be t ra y e d m e. W h i l e I w as s t ru g gl i n g f o r th e f am i l y , s h e w as c h e at i n g o n m e ” , h e s a i d. N ge l e, on e o f t he be s t k n own
HI V/ AI DS a c ti vis ts in Bot s wa na sa ys t hat at on e sta g e in his l if e , he p e rc ei v e d H I V / A I D S t o b e a dea t h s e n te nc e a nd dec i d e d th a t h e w as g o i n g t o en d h i s l i f e19. F ra nk , Bh i nd o a nd B r a b an t f ou n d t ha t wo m e n h a ve t o d e al wi th th e p r obl e m s o f d yi n g an d l ea v i n g th eir c h i l dr e n, o f h a vi n g i n fe c t ed th e i r c hi l d re n a n d i n to l er a bl e l e v e l s of s e l f- bl a m e1 7. J os ep h a n d B h a tt i , i n th e i r s t ud y i n In di a , re p o rt t h at w o m e n had s t ro n g fe e l i ng s of g u i l t an d c o n c e r n fo r t he i r i n noc e nt l y i nf ec t ed c hi l d re n a n d t ha t t h e y q u es ti on ed th e j us ti c e o f t he “S u p r e m e B e i ng ”1 5. B u s an g an d T h ar ak a n f o un d t h at 4 3 % of pa t i e nt s i n t h ei r s t u dy h a d s l eep l o s s w h i l e 9 1 % r e p or t ed th a t t he y ha d d e pr es s i o n20. O n e m a y b e l ed to th i nk t ha t th i s ps y c ho - e m o ti ona l t r au m a t h at P LWHA s u ff er i s du e t o t h ei r l ac k o f k no w l ed g e ab o ut th e di s e as e . S tu d i e s s h ow t h at e v en h e al th pr of e s s i o na l s h a v e t he s a m e p r obl e m s w h en th e y s u ff e r h i gh ris k exp o s ur e t o H I V / AI D S s uc h as ne e dl e p ri c k s o r c o nta c t w i t h i n fe c t i o us b o d y f l u i ds . Ne w to n f ou n d t hat s h ock , d i s b eli e f, a nd a f ee l i ng “ l i k e be i n g h i t o n t h e h ea d wi th a h a m m er ” ar e t he i ni ti al re ac ti o ns t o hi g h r i s k oc c u pa t i o na l e xp o s u r e, i n n u rs es21. Th i s w as l at e r f ol l o w ed b y f e ar , a n ge r a n d t he nu rs es fe l t t h at b e i n g H I V p o s i ti v e eq u al s de a th . Sh e f oun d t h at w he n n u rs es h ad be e n s o e x p o s e d, th e y de v e l o p ed an alt e r ed s el f i m a g e. I t w a s a s i f th e y be c am e a n e w p e rs o n, t he H I V p os i t i v e p e rs on . U n e m pl o ym e n t A n o th e r p ro b l e m th a t P L W H A s u f fe r i s une m p l o y m en t . I n a s tu d y i n F r a nc e, Dr a y - S pi r a e t a l f ou nd th a t o nl y a b ut 50% of P LWHA w e r e e m p l o y ed22. T he y f oun d t h at 10% of th ei r r e s p o nd ent s e x p er i en c ed wo r k r e l a t ed d i s c r i m i n at i o n l i k e di s m i s s al , t h re a t o f di s m i s s al , n on r en e wa l o f c o nt r ac t , a n d b ei ng i s o l a t ed an d k ep t i n t he ba c k gr o u nd . M as t e t al fou n d
t h at H I V i n f ec te d wo m e n f i n d i t d i f fi c u l t t o w or k23. The y f ou n d th a t e v e n m i n o r j o bs a r e di ff i c u l t fo r t h em w h e n t he y a r e i l l . R e p o rt i n g f r o m B o ts w a na , K a l a ne s ta t es t h at w h e n P L WHA b ec a me s i c k o r di s c l os e d t h ei r st a tus , t he y lo st th ei r j obs an d t he ir fi n an ci al f r ee do m24. B u s an g an d T h a ra k a n2 0, i n t he s tu d y c i t e d a b o v e f oun d t h at 49% c e nt of t h e p at i e nt s w e r e u nemp l o y e d an d t h at 50% of th e m e a rn ed thr e e h un d re d p ul a o r l es s , p e r m o n t h. J os e ph a n d B h a tt i i n th e i r s t ud y i n In di a , o f s er o po s i ti v e w i v e s o f m e n w h o h a d H I V / AI D S , f o und th a t th es e wo m e n e x p e ri ence d f i na nc i a l di f fi c ul ti es a f te r d i a gn o s i s of HI V / A I D S i n t he i r fa m i l i e s1 5. Th i s wa s b ec au s e of l oss of j ob s by t h ei r h us b an ds o r t h e mse l ves . Bol t on a n d M i l k i n t h ei r s tu d y i n U g a nd a, o n h o w Afr i c a ns vi ew t h e i m p a c t of H I V, r e p or t ed th a t t he i r re s po nd e nts l i s te d p ov e r t y , re du c ed i nc om e a nd l ac k o f f o od as t he m ai n p r o bl e ms6. Th is i s mo s t pro bab l y be ca us e o f lo ss o f e m p l o y m en t a n d i n ab i l i t y t o wo r k . I n Bo ts w a na , ” a l a rg e c oa l i t i on o f o r g an i s at i o n s an d i nd i v i d u al s h a v e l au nc h ed a c am p a i gn u rg i ng t h e B o ts w a na g o v e r n m en t a n d p ol i c y m ak ers to p u t i n p l a c e a l aw t o p ro t ec t H I V r el at ed ri g ht s i n t he w or k pl ac e ”25 F o o d an d n u t ri t io n F o o d i s a v e r y i m p ort a nt i t e m i n th e f i g h t a ga i n s t HI V / A I D S. La c k of f o od m a y l e ad to ea r l y d ea t hs i n w om e n w h o h a v e AI DS as Fr a nk , B hi n do a n d B r a b an t1 7 s t at e i n the i r p ub l i s he d s tu d y i n H I V i n f ec t ed wo m e n i n L o ui s i an a, U S A . Br own a nd Boa g s ta t e th a t o bs er v a t i o na l s t ud i es h a v e d e m o ns t rat e d t ha t m i c r o nu t ri en t d e fi c i e nc i e s i n H IV p os i t i ve i nd i vi d ua l s a r e a s s o c i a t ed w i t h fa s te r d i s ea s e p ro gre s s i o n a nd m o r ta l i ty26. F a wz i , M s a m a n ga et al , i n a s t ud y (in H I V i n f ec t ed wo m e n ) o n p reg n an c y o u tc o m es i n T a nz a nia , f o un d th a t m u l t i v i t a m i n s u pp l e m en ts g i v e n i n p r e gn an c y l ed t o s i gn i fi c a nt i nc r ea s e i n C D4, C D8, a nd C D3 c o un ts a nd r e d uc ed i nf a nt m o rt al i t y27. An d rews s u gg est s t ha t n utr i ti on re m a i ns a c o rn e rs ton e o f HI V m a n a ge m e n t a nd ad v i s e s th at nu t ri ti ona l i nt e r v en t i o n a n d di e ta ry r e c o m m e n da ti o ns s h ou l d b e s t ar te d e ar l y28. H e re c o m m e n d s a d i et wi t h en o ug h e n er g y , p r ot ein , a n d v i ta m i ns , t hat i s we l l ba l an c e d. U n f o rt un a te l y th i s k i n d o f d i e t i s a p i p e dr e a m fo r po o r , ou t o f w o rk P L W H A . In r ec og ni ti o n of th e s i t u at i o n of A I D S p ati e nt s an d t h e n ee d fo r a ba l a nc ed di et , t h e g o v e rn m en t o f Bo tsw a n a p ut i n pl ac e a p r o gr a m m e of g i v i n g f r ee r at i o ns to s u c h p a ti e nt s . T h e A I D S c om m u n i t y w a s s ho c k e d r e c e n tl y wh e n t he go v e r n m e nt d o w nsi z ed th i s p r og r a m m e29. O f al l t he p r o gr a m m e s t o c u t , t h i s s h o ul d ha v e bee n l as t o n t he l i s t be c au s e , as g o v e r n m en t h as c o rr e c t l y a s s e s s e d, t h e f i g ht ag ain s t H I V/ A ID S i s a fi gh t f o r t he s u rvi v a l o f Bo t s wa na as a na ti o n. P o v e r t y P o v e r t y an d re du c ed i n c o m e i s i n de ed on e o f t h e m a j o r o ut c o m e s o f H I V / A I D S i n a c o m m u n i t y6, a nd w h en PLW H A g ot s i c k or dis c l o s e d t hei r s t at us , t he y l os t th ei r j ob s a nd th ei r f i na n c i al f r ee d o m2 4. PLWHA desire t o e x t ri c a te th e m s e l v e s f r o m po v e r t y . B ol t on a n d M i l k f o un d th a t 8 1. 3 % o f p a ti en ts i n t he i r s t udy n e ed e d fi n an c i al as s i s t an c e a n d t ha t 62 . 5 % of t h e m n e ede d e m p l o y m e n t6. A nd e rs o n and D o y al fo u nd th a t m o s t A f ri c a n w o m e n l i vi n g wi t h H IV i n L o ndo n , di s l i k ed ta k i ng be n ef i t s a nd p re fe r red t o w or k and s u pp o rt t h e m s e l v es1 9. O ne of th e i nt e re s ti ng t hi ng s t ha t c am e t o l i g ht i n A n d e rs o n a n d D o y al ’ s s t ud y wa s t ha t m os t wo m e n f e l t t h at f i nd in g “so me t hi ng to do ” (wo rk or s tu d y) was th e mo s t i mp ort a nt t hi n g
t h at w ou l d i m p ro v e th e i r l i v es . F i n di ng j o b s i s m a d e d i f fi c u l t fo r PL WHA b e c a us e as m e nt i o ne d a b o v e th e y a re d i s c r i m i n at ed ag ai ns t . P o v e r t y amo n g PLW H A r es ul ts i n p oo r a c c o m m od a ti on . T he s e pe o pl e h a v e n o ho u s i ng , a re ab o ut to l os e th ei r h ou s i ng , o r re q ui re a di ff e re n t t y p e o f h ou s i n g as s h o w n b y St a j d uh a r an d L i n ds ey30. T he y f ou n d t ha t P L W H A p re f e r to be c a re d f or a t h o m e an d t h at t he y d o n ot l i k e i ns ti t ut io na l c ar e . R e l a ti o nsh i p s P L W H A a l s o h a v e t o c on te n d w i t h i n t er pe r s o n al r el a ti on s h i ps an d l i v i ng i n a c o m m u ni t y . J o s e ph an d Bh at t i , i n t he i r s tu d y i n In d i a , f ou nd th a t th e re w e r e p r ob l e m s i n s ex u a l i nt e ra c ti on a n d s e x ua l i n ti m a c y a ft er di a gn os i s o f HI V1 5. T h e y a l s o r e p or t ed th a t m o s t re s po nd e nts no tic e d a c h an g e fo r t h e wo rs e i n t he i r ma rit al re la ti o ns hi p af te r HI V di ag n os is . The sa me I n di an s t ud y a l s o s ho w e d t ha t t h e s e r opo s i ti v e w om e n ha d s e l f i m po s ed r e s t ri c t i o ns i n s o c i al i nt e ra c t i on s b ec au s e of s h a me , f e ar of s ti g m a a nd b e c a us e th e y no l o ng e r t ho u gh t t h at t h ey w e r e a ttr a c t i v e. J os e ph a n d B h a tt i al s o fo u nd tha t re l a ti ons i n t he s oc i a l c i rc l es an d f a mil i e s o f r e s p o nd ent s b ec a m e s tr ai n ed a s a r es ul t of a H I V d i ag n os i s . I n ge r s o l l re p o rt s th at P LW H A d e v e l o p s o c i al ph obi a31. Th e y ha v e p e rs i s te nt f ea r o f i nte r p er s o nal s i t u at i o ns or s c r ut i n y b y ot h er s a n d a v oi d s uc h s i tu at i on s . An de r s o n a nd D o y a l ’ s s t u d y s ho we d t h at w om e n ha d g r e at a n x i e t y ab o ut b e i n g k n own t o be H I V po s i tiv e , be i n g s e en a t t he c l i ni c an d t h ei r m ed i c i n es be i ng s e en7. Th u s th i s ne e d f or s ec r ec y w as a g r e at c on s t r ai n t on th e s e wo m e n ’ s l i v e s . A n de rs o n a nd D o y al als o m e n t i o n t ha t t h e y f ou n d t he s e w o m e n w er e re j e c t ed b y t h ei r h u s b an ds o r p a r tn e rs , b e c a us e th e y w e re H I V po s i tiv e . Th e y ar e re j e c t ed an d i s ola t ed a cc o rd in g t o t h e F ran k , Bhi ndo , a n d Brab a nt s t ud y wh ic h is q u ot e d
a b o v e1 7. Kg a k o l e , i n h i s w or k i n B ot s wa na1 4, als o m e n t i o ns th a t P L W HA a r e i s ol a te d i n t he i r f a m i l i es an d a t s oc i a l f un c t i o ns . A d h e r en ce t o t r ea tm e n t A d h e re nc e to dr u g tr e a t m en t i s of p a ramo u n t i m po r t an c e i n t he l i v es o f P L W H A . W i th o ut ad h e re nc e, t he y b ec om e i l l a nd m a y d i e. La c k of a d he r en c e a l s o ha s a be a ri ng o n t h e m an a ge m e n t o f t h e A I DS e pi de m i c b e c a us e i t m a k es i t e a s i er fo r r e s i s t an t s t r ai ns of HI V to e m erg e . H e c k m a n e t a l f ou nd th a t i n c re a s e d al c o h ol u s e ha d a ne g at i v e e ff ec t o n a d he r en c e w h i l e a go o d r el at i o n s h i p wi th th e a tt en d i n g p h ys i c i a n h ad a p o s i ti v e e ff e c t32. I ng e rs ol l’s s t udy s h o we d t h at us e of crac k c oc ai n e in t he p a s t s i x m o n th s , his to r y of e v er us i n g h er o i n an d an y o th e r s u b s t an c e a b us e w e re ne g at i v el y as s o c i at e d w i t h ad h e re nc e3 1. S p i r i tu al it y “ W h et h er o r no t a hu m a n s e r vi c e w or k e r f i n ds m ean i ng i n a n o r ga ni s e d re li gi ou s gro u p o r fro m p e rs ona l s pi ri tu al re fl ec ti on , man y pro f ess io nal ’s c as e l oa ds wi ll i nc lu d e p erson s wh o fi nd me an in g i n suc h t hi n gs . Rel ig i on a n d sp i ri tu a l iss u es c an i nf lu en c e an i n di vi du al ’s ba si c co pi ng
m e c h an i s m s , or i e nta t i o n t o l i fe an d d e at h , a nd def i ni ti on o f s el f ”33. I t i s t h e re fo r e n o t s u r pr i s i n g t ha t p e op l e s u ff e ri n g fr om a de v a s t a ti ng dis ea s e
s uc h as HI V / A I D S us e s pi ri tu al it y a nd rel i g i o us gr ou p s as p a rt of th ei r c o pi ng a rm a m e n t . H e a t h an d R o d w a y i n th ei r s tud y i n C ana d a i n w om e n w h o ha d H I V i n fe c t i o n , f ou n d a de e pe ni n g o f s pi ri t u al b el i efs e x pe ri enc e d b y s o m e of th e wo m e n1 1. S o me pe o pl e, i m m e d i a t el y a ft er dia g no s i s , ha v e t o d e al wi th s p i r i t u al a nd e xi s te n ti al i s s ue s b ec au s e of th e l i n k b et w e en A I D S an d u n ti m e l y de a th34. S o m l ai et a l f ou n d t ha t af t e r di ag no s i s , H IV p o s i ti v e wo m e n i n v es t ed i n s p i r i tu al c o pin g s tr a te gi es an d t ha t t h e y b e l i e v ed th a t di v i ne i n te rc es s i o n h a d r en e w e d th ei r s pi ri tu al g r o wt h a nd c o nn ec te dn e ss wi th o t he rs35. I n I n di a, J os e p h a nd Bh a tt i f ou nd th a t s e ro p os i tiv e w o m e n s pe nt an i nc r ea s e d a m o u nt of t i m e i n rel i g i o us a c ti v i t i e s , a f te r t h ei r H I V d i a g no s i s1 5. T h i s s ho ws th at s pi ri t ua l i t y a nd r el i gi o n a r e a n i mp o r ta nt ele m e n t, i n t h e lives of some PLWHA.
C o m p an io n s hi p o f o t he r PLW H A
Pe o pl e with HI V/ AI DS li ke t h e c o mp an ion s hi p of ot h e r PLWHA. He at h a nd R o d w a y fou n d t ha t m o s t o f t he w o m e n i n th ei r s tud y w i s h ed t o m e e t wi t h o t he r HI V p o s i ti v e wo m e n1 1. Th i s i s b ec a u s e t h e y s e ek s o c i a l s up po r t t o e x p r es s the i r e m o ti on s a nd c on c er ns36. Th i s i s g ene r al l y n o t f o r thc o m i ng f r o m th ei r c o m m u ni tie s . Th e y ar e s ti g m ati s e d a nd i s ol a te d as h as b e en s h o wn a bo v e . PL WHA w o ul d g r a v i t a te to th e c o mp a ni o nsh i p of s i m i l ar l y i n fe c t ed pe o pl e b ec a u s e t h e y s u pp o rt an d u n de rs t a nd on e a n ot h er . He a th a n d R o d wa y f ou n d th a t H I V po s i ti v e w om e n s e ek , “ a g oo d l i s t en e r, n on j u dg e m e nta l r es p ect, an d e m ot i on al a s w e l l as p ra c tic al s up p o rt ”1 1.
S o c ia l p ho b i a, i s ola t i on , a nd r e cl us i ve n e ss T h e d i a gno s i s of H IV d i s ru pt s t he no r ma l p at t er n o f l i vi n g, a c c o rd i n g t o t h e fi n di ng s o f J o s ep h a n d B ha t ti i n I nd i a1 5. P L W H A a t o ne ti m e o r an ot h er h a v e r edu c ed s oc i a l c on ta c t . T hi s i s ma i nl y d ue to th e sti g ma o f HIV/ AI DS. Th is fo rc es t h e m t o k ee p t h ei r a f fl i c ti on a c l os el y g u a rd ed s e c re t, b y k e ep i n g t o t he m s el v e s . Th e s ha m e w h i c h t hey f e el , al s o m a k e s th e m w a nt t o i s o l a te t h e m s e l v es fr o m a p u bl i c t ha t i s dis g uste d b y t he i r c o n di ti on as Po s e l h as i nd i c a t ed1 0. J os e ph a nd B ha t ti a l s o f ou n d th i s te nd e nc y to s el f -i s o l a t e, i n s er o pos i t i v e w o m e n , be c au s e o f s h a m e, s ti g m a an d th e f e eli n g t ha t t he y w e r e n o l o ng e r at t ra c ti v e1 5. T h us w e s e e t h at w he n a pe rso n b ec o me s HI V p os i t i v e, t h ey e n c o un te r a n u m b e r of n e w l i f e exp e r i e nc es . T he s e exp e r i e nc es ar e p ec ul i a r t o t he s t at us o f b e i n g H I V p o s i ti v e be c au s e t hi s c o nd i t i on i s u ni que . T h er e ha s n e v e r b een a di s e ase o r c o nd i t i on l i k e HI V / A I D S i n t he his t ory o f
m a n k i n d. A l t ho ug h th e r e a re an d h a v e be e n m a n y d e ad l y d i s e a s e s i n th e p a s t , H I V /A I D S ha s p a th ol o gic a l , s oc i al , e m o t i o na l a n d ps y c ho l og i c al c h ar ac te r i s ti c s t ha t m a k e i t out s ta nd i n gl y u n i q ue . S i m il a r Stu d i es T w o s tu d i e s t ha t a re s i m i l ar to th i s s tu dy w e r e d on e i n I nd i a an d i n C a n a da .
I n I n di a, Jo s ep h a nd Bh at ti1 5 s t u di ed th e p s yc ho s oc i a l p ro bl em s a nd c o pi ng p a tt e r ns a dop t ed b y s er o p os i ti v e w i v e s o f m e n w i t h H I V / A I D S, p o s t HI V di a gn os i s . T h e y u s e d a n i nf or m a t i o n d at a s he et to c o m pi l e d e m o g ra ph i c an d i l l n e s s va r i ab l es . Th e y u s e d t he s e m i s t r uc t u r ed i n te r v i e w m e t h od and th e m od i f i ed C op i ng Sc a l e de v e l op ed b y L az ar us a n d F ol k m a n t o a s s es s ps y c h os oc i a l p rob l e ms an d c op i n g p at t e rns37. T h e m ea n a g e o f the r es p on de n ts w as 2 1 .5 7 y e ars ( ra n ge w a s 18 to 4 0 ) . J os e ph an d Bh at ti fo u nd t ha t t he se wo me n suf f e re d j o b lo ss, a nd h a d f i na nc i a l pr o bl e m s . T h e y a l s o f o un d t ha t t he wo m en ha d a l ot of c on c er n s a n d w or r i e s ab o ut th ei r c h i l d re n . T he y e x pe rie n c e d m ar i ta l pr ob l e m s , s ti g m a a nd s h a m e. J os e ph a nd B ha t ti f ou n d t ha t th e wo m e n h ad d i f fi c u l ty m a i n ta i n i ng t h ei r s o c i al n etwo r k s and t h at the i r s oc i a l i n te r ac ti o n s d i m i n i s hed p os t HIV d i ag no s i s . T he s e w o m e n we r e s ti l l exp e c te d to t ak e c a re o f the i r s i c k hu s ba nd wh e n th e y th e m s el v es we r e not c a re d for . T h e w o m e n bec a m e m ore r el i g i o us bu t k ep t m o r e t o t h e m s e l v es be c a us e o f s ti g m a a nd s h a m e. J o s e p h a n d B ha t ti r e po r t th a t th es e w o m e n h ad c o ns ta nt th o ug h ts of de a th an d d y i ng , a n d t ha t th e i r o v e r ri di n g e m ot i on w a s f ea r . T h e c o m m o n l y a do pt e d c o pi ng m e c h an i s m w as tha t o f e s c ap e a vo i da nc e. I n C an ad a, H e at h a nd R o d wa y u s ed a que s ti on na i re an d i nd i v i d u al i n te r v i e w s t o s t u d y th e p s yc h os oc i a l n eed s o f w o me n i nf ec t ed w i t h H I V1 1. T h e m e a n a ge of t he i n te r v i ew e e s w as 3 4 .5 2 y ear s . H e a t h an d R o d w a y fo u nd th a t, a t t he t i me of di ag no s i s , t h ese w o m e n n e ed e d “so m e o ne to l i s t e n to m y c o nc e rn s ” a nd “ s o m e o ne to b e t he r e w i t h m e ” . S p i ri tu al i ty e m e r g ed a s an i m po r t an t f ac to r i n t he l i v e s of t h es e w o m e n . So m e of the w o m e n w e r e n ot ha p p y wi th t h e c a r e an d s up p ort t h e y g o t f ro m h ea l t h c a re w or k e r s , a t t h e t i m e of dia g no s i s . Al l t he w o me n r e p or t ed th a t t he y ha d s o m eon e w ho wa s g i vi n g th e m he l p a n d s u p por t -f a m i l y m em b e r s , o th e r PL W HA , c o un s e l l o rs a n d he a l t h c a r e w o rk e rs . M o s t o f t he w o m e n w i s h e d to m e e t wi t h o t he r wo m e n w ho h ad H I V i n fe c t i o n. T h os e w ho ha d c hi l d r e n ha d fe a rs ab out th ei r o wn p re m a tur e d e at h a n d w h a t w oul d h ap p en t o t h ei r c hi l d r en th e re a ft e r. The y f ou n d th a t s ti g ma was pre val ent an d t h at i t i mp ac ted th e wo me n ’s s el f-es t ee m,
CHAPTER 3: METHODS S t u d y d es i g n T h i s wa s a qu al i t a ti v e s t u d y . T h e s t u d y w a s d on e i n G ab or on e b e t we en J ul y a nd Se p te m b e r 2 0 06 . I n ter v i e ws w er e c o nd uc te d a t t h e ra t e o f o ne o r t wo i nte r v i e ws pe r w ee k . S i t e o f s tu d y T h e s t u d y w a s c on du c te d i n Ga b o ro ne . G a b o ro n e i s t he c ap i t a l c i t y o f B o ts w a na . I t h as a po p ul at i on o f 1 8 6 0 00 ( B o ts w a na 2 00 1 c ens us ) . Th e c i t y ha s a m i x e d po pu l at i o n c om p o s ed o f A f r i c an s , In d i a ns , Ca u c a s i ans, an d Ch i ne s e. T h e v a s t m a j o rit y a re A f r i c an s (B a ts w a na a n d A f ric an s f ro m be y o n d B o ts w a na ’ s no r t he r n b o r de rs ) . T h e c i t y ha s a g o v e rn m e n t r efe r r al h os pi t al wi th s p e c i al i s t s . I t a l s o b oa s ts of a s t ate of th e a rt m o de r n p r i v at e h os pi t al wi th s pe c i al i s ts a n d ul t ra m o d e r n eq u i p m e nt . T h e re a re m a n y g o ve r n m e nt c l i ni c s a n d m a n y p ri v a t e d oc to rs pr ac ti c i ng i n t h e c i t y . Th e HIV p r e va l en c e i n p r e gn an t w o m e n i n G a b o ro n e i s 4 4. 8%38. T h e g o v ern m e n t r efe r r al h o s p i t al an d t h e p ri v a t e h os pi t a l , h a ve A I D S c l i ni c s w h er e p a ti en ts ge t t h ei r a nt i -r e t ro v i ra l ( A R V ) dr ug t re at m en t . M a n y pr i v a te doct o rs a l s o g i v e A R V s t o HI V / A I D S pa t i e nt s . Pe o pl e a re t e s t ed fo r H I V at Teb e l o p el e (a n o n g o v ern m e n ta l or g a ni z a ti on - N G O ) , at th e g o v er n m e n t r efe r r al h o s p i t al , at th e p ri v at e h os pi t al, an d a l l c l i n i c s an d p r i v at e d oc t or s ha v e e a s y ac c es s to H I V/A I D S te s t i n g f ac i l i t i es th ro u gho u t B o ts wa n a. T h e p ar ti c i p an ts i n th i s s tu d y w e r e f ou nd at H ol y C r o s s Ho s p i c e a t B o n tl en g , M a t l o G o S h a M ab ap i i n O l d N a l ed i a nd th e Ol d N a l ed i B ap t i s t C h u rc h .
T h e H o l y c r oss H os p i c e i s ru n b y th e Ang l i c a n Chu r c h . I t c at e rs f o r p a ti en ts wh o a r e v e ry i l l ( us u all y T B , an d o r A I D S ). T he pa ti en t s ar e g i v e n fo o d, m e di c a l a t te n ti on a n d o th e r a s s i s ta nc e th a t th ey m a y r e qu i re . T h e p at ien t s are c ol le ct e d f rom t h ei r h ome s i n t he mo rni n gs a n d in th e a f te r no o n t h e y a r e ta k en b ac k t o t he i r ho m e s . Th i s i s do n e th r e e da y s a w e e k . Whe n t h e p ati e nt s ge t b e tt e r, th ey a r e d i s c h a r ge d f rom t h e
h o s p i c e. Th e y no l o ng e r n ee d to go to t he ho s p i c e. M a t l o G o S h a M ab ap i i s a s u pp o r t gr o up f o r pe o pl e i n fe c t e d a nd af f ec t e d b y H I V . I t w a s f o r m ed b y a n d i s als o r un b y pe o pl e w i th H IV /A I D S . T hi s i s a n o r ga ni z a t i o n w h i c h c a te rs fo r pe op l e w h o ar e i nf e c t ed or a r e a ff ec te d b y H I V / AID S . It s m em b e r s m ee t re gu l a r l y t o s up p or t an d e nc o u r ag e e ac h o t he r . T he o r ga ni z a ti o n al s o o ff e rs c ou ns e l i n g to i ts m e m b ers . I t i s a n N G O t h a t g e ts f u nd s f r o m d ono r s a nd t ri e s t o c h a nn e l th es e f u nd s t o e m p o w e r i t s m e m be rs . O l d N al ed i B a pt i s t c h u rc h h as p e op l e i n i t s c o n gr e ga t i o n w h o h a v e HI V/ AI DS a n d t he pa s to r as sis ts t h es e p e op l e howe ve r he c a n. A l l t he s e o r g an i z at i o n s a re i n G a b or o ne.
S t u d y p op u l at io n T h e s t u d y p o pu l at i o n w a s al l PL W H A w ho w e re c l i e n ts o f T he H ol y C ro s s H o s pi c e , M a t l o G o S h a M ab ap i a nd O l d N a l e di Bap t i s t C hu rc h , i n G a b o ro n e, B o ts w an a. Sa m pl i ng N o n - ra n dom s e qu en ti al s a m pl i n g w as use d . T hi s me a ns t h at i n te r v i e w s w i t h a dd i t i o n al p a ti en t s w e re c o n du c t e d u n ti l i t w as fe l t t h at n o n e w i n fo r m a ti on o r t y pe o f i nt e r v i ew e e w as be i ng a d ded to th e r es e ar c h .39 T h e res earc he r c on ti n uo us l y re vi e wed al l co ll ec ted da t a in o r d er t o d e te r m i ne w h e n th i s p oi nt ha d b ee n r e ac h ed . T h e s i z e of th e s a m pl e wa s de te r m i ne d by t h e n u mb e r a t w hi c h d at a c ol l e c t e d re a c h ed “sa t u ra ti on p o i n t ”. T hi s i s th e p oi n t at w hi c h th e r e s e a rc her f el t th a t n o n e w i nfo r m a ti o n o r t yp e o f i n te r v i e w ee w as b ei n g g e ne r at e d f r o m i nt ervi e w s . T h e sa mp le co ns ist ed of pe o ple wh o ga ve th ei r f r ee co ns en t t o b e i n te r v i e w ed ; p e op l e w h o als o s a tis fi e d th e i nc l u s io n a n d e xc l u s i on c ri t er i a . Th e re s e arc h er als o u s ed p u rpo s i v e s a mp l i n g. Th i s m e a ns t ha t s e tt in gs wh e r e pa rtic ip a nt s c ou l d be ea si l y re ac hed we re i den t if ie d a nd e s pe c i all y i nf o r m at i v e p a rt i c i pa n ts we r e s el ec t ed .40 N o n go v e rn m e n ta l o r g an i z at i o n s ( N G Os ) , H o m e B a s ed Ca re ( H B C ) pr o g ra m s , c h ur c h es w i t h H I V / A I D S p r o gr a m s e t c . a r e exa m p l es of s uc h s et ti n gs .
T h e Di re cto r of t h e Ho l y Cro ss ho sp ice wa s a sk ed f o r pe rmis si on t o do t h is res earc h in he r i ns ti t ut io n. She aske d f o r a co p y of th e p r ot oc ol a n d g a v e h e r c o n s e nt th er e a ft er . Sh e i de n ti fi e d a l a d y w h o w ou l d b e t he r e s e a rc her ’ s c o nt ac t p e rs on . Th e re s e arc h er w ou l d c o nt ac t t h i s l ad y to t e l l h e r w he n h e wa s g oi ng to c o nd uc t i nt e r v i e w s . T h e s a m e l a d y i n tr o du c e d t he re s e ar c he r t o he r c l i en ts a n d h el ped hi m to s e l ec t s u i t ab l e i n te r v i e w ee s b ec au s e s h e k n ew h e r c l i en t s be t te r . A ro o m wa s p r o vi ded f o r c o n du c t i ng i nt e r vi e ws i n , bu t u s u al l y i t wa s m o re c o n v en i e n t t o fi n d a s ec l u d ed s p ac e i n th e h os pi c e g ro un ds . Th e re wa s a l ot of h u m an tra f fi c , h u s t l e a n d b us tl e i n t h e b us y bu i l di n g. N o n e o f t ho s e ap p roa c he d d ec l i n e d a nd t h e i n t er v i e w e es s ee m e d t o l i k e t o s ha r e th e i r s t or i es . A t t h e en d o f t h e i n t e r vi e w , s o m e f oo d w a s gi v en to t h e i n t er v i e w e e t o t ak e h o m e. T h i s wa s a to k e n o f a pp r ec i a ti o n of his /h e r t i me a nd al so a to ken of s u pp ort . T h e r es ear c he r we n t t o t he O l d N al e di go v e r n m e nt c l i n i c t o s o u rc e i n te r v i e w ee s . H e f oun d o u t t hat th e re w ou l d be a l o t o f r e d ta p e a nd f o r m al i t i e s b ef o re the i n te r v i ew s c o ul d b e c on d uc t e d. Th i s w a s d es pi t e t h e f ac t tha t p e r m i s s i o n ha d a l r e a d y b een g ra nt e d a t t h e M i ni s t r y of H e a l t h h ea d qu a rt e rs . T h e r es ear c he r wa s t h en di re c t e d t o M a tl o G o S ha M a b ap i i n O l d N a l ed i . T h e l ea der o f th i s g ro u p w as at fi rs t v e r y s k e pti c a l a b ou t c ond u c t i n g r e s e a rc h i n he r o r gan i z a ti on . S h e s ai d th a t m a n y p e op l e (i nc l u di n g tho s e
f r o m o ve rs e as ) ha d i n te r v i e w ed th e m but th e y ne v e r go t a n y f ee d ba c k o r b e ne fi t f r om s uc h r es e ar c h . A ft e r s o m e d i s c u s s i o n, s h e w as c o n vi nc ed t h at s h e s h o ul d a l l ow m e to do r es ea rc h i n h e r o rg a ni z a ti on. It w as d ur i ng t h is d isc us si on t h at s h e sa id so me t hi ng th a t wo ul d s t a y wi th me f o r a lo n g t i m e . S he s ai d ,” Y ou s e e m o s t o f u s P L WHA a r e d y i n g , n ot bec a us e of th e v i r us , b ut b e c a us e of hu n ge r .” S h e wa s no t e c h oi n g t he i n fa m o u s w o rd s o f a pr es i d e nt . Sh e w a s s i m p l y s ta ti n g th e f ac t t ha t HI V / A ID S i s m o re d e v a s t at i ng i n t h os e w h o d o no t h a v e f oo d . I n cl usi o n c ri t eria : 1 . P L W H A l i v i n g i n G ab o r on e. 2 . P e o pl e w i th H I V/ A I DS , i r r es pec ti v e o f t he s t ag e o f t he dis e as e . 3 . P e o pl e w ho w e re w el l e no u gh t o a ns w e r q u es ti on s f o r t he m s e l v es . 4 . P e o pl e w ho w e re 1 8 y e a r s o r ol d er . 5 . P e o pl e w ho ga v e th ei r c on s e nt t o p ar ti c i p a te i n t he s t ud y . M e a s u r ing t oo l o r in s t r um e nt D a t a wa s c ol l e c t e d u s i n g th e i n de p th i nt e r v i e w me t ho d . T he r es ea rc h e r h a d a f ac e- t o -f ac e i nt e r v i e w wit h e ac h p ar t i c i p an t an d t hi s w as au di o t a pe d . T he au di o i nt e r v i e w s we r e c on duc t ed i n S et s w an a. Th e y w e re l a t e r t r a ns c ri b ed i n to E ngl i s h.
T h e r es ear c h s t at e me n t w as , ”Te l l m e a bou t y ou r l i fe s i nc e y ou k n e w t ha t y o u ha v e H I V / A I D S.” T hi s s ta te m e n t w as c h ose n b e c a us e i t i s i n l i n e w i t h t h e o bj ec ti v e s of t h e s tu d y , w hi c h w as t o l ea r n fr om P L W H A h o w t he y l i v ed th ei r l i v e s , a n d w h a t th eir e x p er i e nc es w er e a s t he y l i ve d t h ei r l i v e s . T h i s s ta teme n t i s als o a c c e p ta b l e i n t he s e tt i n g o f t h e s t ud y , w hi c h i s i n G a b o ro n e, B o ts w an a. Th e r es ea r c h e r fe l t t ha t a d i re c t qu es tio n l i k e, “ W h at h as y o u r l i f e b e en l i k e s i n c e y ou k n e w y o u h a d H I V / AI D S ? ” wo ul d s o un d l i k e a n i n t er r og a ti on . I t w o u l d be i m p o l i t e. Di r ec t q uest i on s l i k e t h is , ab o ut iss ue s co n si de r ed s e nsi ti ve in th is s et ti n g we re on l y us ed a f te r s o me r ap po r t h a d b ee n f i r ml y es t ab l i s h e d. T h e s t a teme n t a t t i m e s w ou l d be re p ea t ed , l at e r o n i n th e i n te r v i e w a s a q u es ti on e. g . 1 . “How h as your li fe be en si nc e yo u k ne w you h ad
H I V / A I D S? ” 2. “ H o w i s y ou r l i fe ? ” 3 . “ H ow a r e y o u r f ee l i ng s ?” 4 . “ Te l l m e h o w y ou l i v e w i th o th e r p eo pl e i n t hi s c o m m u n i t y ”. 5. “ Ho w d o y ou m a n a ge s i n c e y o u be c a m e a wa r e t ha t yo u h a v e HI V / A I D S? ” I t w as fr om s uc h a dd i ti o na l s t at eme n t s an d q ue s t i o ns t ha t i nt e rvi e w e es ga v e fu l l e r a c c o un ts o f t h ei r s to r i e s . H ad t hi s no t be e n d on e , t he i n te r vi e w er w oul d h a v e e n ded up w i t h v e r y l i t tl e i n fo r m a ti on ab o ut the l i v es of P L W H A . Pa r t o f t h e r eas o n fo r t hi s i s th a t ta l k i n g a l ot i s r eg a rde d t o b e i m m o d e s t i n t h i s c o m m u n i t y . “ O b u a t ha t a o r oa b al ab a l a ” ( “ H e s pe ak s a l o t” or “ He i s a l w a ys s ay i n g s o m et h i n g ”) ar e u nf a v o ura b l e c o mme n t s us ed to de s c ri b e t h os e wh o t al k a lo t o r th os e wh o a r e mad . I t is also co ns id ere d
i n dis c r e te t o t al k a l o t /a t l en g th to s t ra ng e rs , es p ec i a l l y ab ou t v er y i m p o rt a nt t h i n gs . T hu s t he fi rst r es p o ns e t o a q u es t i on o r e nq u i r y f ro m a s t ra n ge r m a y b e c ur s or y o r i m m a t e r i a l ( w i th o ut s u b s t an c e ) . I t i s o nl y a f te r r a p po r t i s c r ea t ed t ha t s ub s t a nt i v e a ns we r s c a n b e e l i c i t e d. T h i s i s a n ot h er rea s on wh y t h e r es ea rc h s t a te m e n t h ad to b e r ep e ate d a s i t wa s o r i n d i f fe re n t w a y s , d u ri n g th e i nt e r vi e w .
P e o pl e t en d t o b e re l uc ta nt to p ro v i de i n te r v i e w er s wi th i n fo r m a ti o n o n s e nsi ti v e i s s u es a n d r es e nt t hi s i n v as i o n o n t he i r pr i v ac y41. Thu s t he i n te r v i e w er h ad t o t ak e e x t ra c a r e i n be i n g s en s i ti v e a nd c on s i d er a te o f t h e f ee l i ng s o f i n t ervi e w e es . T h i s wa s d o ne i n p ar t b y t he i n t e r vi e w er a s s u m i n g a l e a rn i n g a tt i t u de an d t h us r en d e ri ng t he i n te r v i ew e e th e s o ur c e o f v a l u ab l e i n f o r m at i on . T h e i n te r v i e we r tr i ed at a l l t i m es to ap p l y t h e s o c i al g r ac es a nd et i q u et te e x pe c t ed of hi m un d e r th e c i rc u m s t a nc es . T h e r es ear c he r wa s a c o m p l e te s t ra n ge r t o al l t he i n te r v i e w ee s . D i v ul gi n g s e nsi ti v e i n f o r m at i on to a s t r an g e r el i c i ts fe el i n gs o f a n x i e t y . M o ut o n s t at es t h at on e wa y o f a l l e v i a ti n g a n xi e t y a bo u t di v u l gi ng i n for m a t i o n on s e nsi ti v e i s s u es i s to as s u re i n t e r vi e w ee s t ha t t he i r r es po ns es an d
i d en ti t y wil l r e m ai n a n on y m o us4 1. T h us th e re s e arc h er t o ok t i m e t o ass u re t h e i n t er v i e w e es t h at th ei r i den t i t i e s w ou l d no t b e d i v ul ge d to an y o n e. T h e r es ear c he r a l s o e x p l a i n ed t ha t t he i n t e r vi e w ee s wo ul d n e v e r b e i n di v i d u al l y i d en ti fi ed w i t h a n y s ta te m e n t t ha t wa s a s s oc i a ted w i t h t he r e p or t. T h e r es ear c he r’ s i n te r v i e w t ec h n i q u e w as i n fl ue nce d , t o a l ar g e e x t en t, b y t he i d ea s o f D e nz i n an d Hu g o. Q u a l i t at i ve r es ea rc h e rs ge ner a l l y ag r ee th a t th e i n d ep t h i n t e r vi e w s e e k s t o , ac c o r di n g to D enz i n , ” ac ti v e l y en te r th e w or l d s o f p e op l e a n d t o
r e n de r t hos e wo rl ds u n de r s t and a bl e f rom t h e … . b e ha v i ou rs , l an gu a ge s , d e fi ni ti o ns, at ti t ud es a nd fe el i n g s of th os e s t u di ed. ”42T h e r e are v a ri o us r e n de ri n gs of h o w th i s i s ac hie v e d i n t he s t ud y fi el d . S o m e w o u l d s a y t ha t ” t h e i n te r vi e w er a s k s an o p en q u es ti on an d t h en b y t he us e of s u m m a ri z i n g t ec h ni qu e s an d qu e s t i o ns of c l ar i f i c ati o n d ra w s o u t t he m e a n i n g an d s en s e o f r ea l i t y t h at the i nt e r v i e w e e p l ac es o n t h e i s s u es u n de r d i s c u s s i o n ”43. So m e s u gge s t th a t a s e ri es o f o p en en d ed qu es ti o ns c a n be ask e d4 2. I n a pr e par a t or y w o rk s h o p fo r t h i s p r oj ect , Pr o f. J an n i e H ug o g a v e a v er y l uc i d pr ese n ta ti o n of hi s un d er s ta n di ng o f t hi s s u bj ec t . H e be l i e v es tha t t h e p ur p os e o f t he i n de p th i nt e r v i e w i n q u al i t at i v e r es e ar c h i s t o br i ng f o r th t h e i n t e r vi e w ee ’ s un de rst a nd i n g o f r e ali t y on a p a rt i c ul a r to pi c . In Pro f Hu go’ s u nd e rsta n di n g of t h e in de pt h i nt e rview me t h od , t he
i n te r v i e w ee i s as k e d a q u es ti on an d i s giv e n fr e edo m t o a ns w e r as h e s e es fi t . Th e i nt e r v i e w e r o nl y s a y s ba c k t o t he i nte r v i e we e w h a t h e u n de r s t and s h i m t o b e s a y i n g. T he i n te rvi e w e e the n a f fi r ms o r c o r r ec ts w h a t h as b e en s ai d b a c k t o him . Eth i cs T h e e th i c s c l e ar a nce f o r th e r es e ar c h w as ob ta i n e d f r o m t he H u m a n R e s ea rc h E t h i c s C om m i t t e e (Me d i c al ) at th e Un i ve r s i t y o f th e W i t wa t er s r a n d ( H R EC ) a nd i s a t ta c h e d (c f A p pe n di x 1 ). Al s o a tt ac h ed a s a n a p pe n di x i s a l et te r w ri tt e n t o t h e P e rma n e nt Se c re t ar y , M i n i s tr y o f H e a l t h ( Bo t s wa na ) , a s k i n g h er f o r pe r mis si on t o co n du ct th e res e arch i n B o ts w a na ( c f A pp e nd i x 2 ). Pe rmi s s i o n t o d o t he res e ar c h w as gi v e n b y t he M i n i s tr y o f H e al t h i n B o ts w a na ( c f A pp e nd i x 3) .
T h e D i re c to r of T h e H o l y C ro s s H os pi c e w a s a s k ed f o r pe r m i s s i on t o c o nd uc t res e arch a t t h e h os pice . T h e le t te r ask in g f o r t his permi ss io n is a t ta c h e d (c f A p pe n di x 4 ). Sh e g a v e h e r c o n s e nt v e rb a l l y th e re a ft e r. T h e l ea der o f M a tl o G o S h a M a b ap i , an d t he P as tor o f O l d Na l ed i B ap ti s t Church we re verbally asked for permissi o n to c o nd u ct r es e ar c h in t h eir r e s p ec ti v e o r ga ni s a ti o ns . Th e y b ot h g a v e t he i r pe rmi s s i o n ve r b all y . I n te r v i e wee s we r e for m a l l y as k e d t o g i v e t he i r c o ns e nt . I t w as e x pl ai ned t o t h e m t ha t t h e y wer e fr ee to a c c e pt o r d e c l i n e the i n v i ta ti on to be i n te r v i e w ed . T h e r es e a rc h er a l s o i nf o r m ed th e m tha t a l l i nf o rma t i on t h ey w e r e g oi ng to gi v e w a s c on fi d e nt i a l a nd th a t th e i r i d e nt i t y w o u l d no t b e r e v e al e d i n an y w a y i n an y r ep o r t or m ed i a. T h e i n t e r vi e w er t he n e x p l ai ne d t h e n ee d to au di o ta pe th e i nt e rvi e w . T h e c o nt en ts of th e i n fo r m a ti on th a t w as g i v en t o i n t e r vi e ws b e fo r e t hey w e r e a s k e d to p a r tic i p a te i s a tt ac he d (cf . App e nd i x 5 ) .
T h e res pon d en ts were all i n te rvi e we d in p r i vat e . All ga ve t h eir co ns en t t o b e i nt e r v i e w e d . N o p r es s u r e w a s a pp l i e d t o g e t th i s c o nsen t . A l l m a t er i a l s - t r an s c ri p ts , ta pe s a nd ot he r i n fo r m at i on p e rt ai n i ng t o t hi s s t ud y ar e g o i n g t o be de s t r o y ed as s oo n a s t he s t ud y r e po rt i s ap p ro v ed . P i l o t st u dy A p i l ot s tud y w a s don e . T hi s i n v o l v e d i nt e r v i e w s wi t h A 2, A 3 a nd A 4. Th e d a ta fr o m t h es e i n t er v i e ws w as i nc l u d ed i n th e m ai n s tu d y be c au s e i t w a s s i mi l ar t o t h e d at a c o l l ec t ed f ro m t he res e ar c h s tud y . It ad de d d e pt h to t h e d at a i n th e r es ea r c h s tu d y. T h e p ur p os e o f t he p i l o t s t ud y w a s a m on g o t he r th i ng s to fin d o u t i f th e i n te r v i e w ee s u nd e rs to o d t he res e ar c h s tat e m e nt tha t w as p ut t o t he m . T h e r es ear c he r a l s o w a n te d t o f i n d o ut ho w t he y un d e rs to od i t. T h e pi l o t s t ud y , i t wa s h op e d, w o u l d he l p th e r es ea r c h e r fi nd an acc ep t ab l e w ay t o p u t t he res e ar c h s tat e m e nt . Th i s m e an s a c c ep ta bl e i n a c ul tu r al s e nse a n d i n as f a r as s ol i c i t i n g t he r e q ui re d re s po ns e f ro m i nt e r vi e w e es . T h e p i l ot s t ud y w as a l s o m e an t t o f in d o u t t he c on d i t i o ns i n t he s t ud y f i el ds i .e . l o gis ti c s , “g a te k e e per s ” ( pe o pl e w h o w ou l d fa c i l i tat e o r p e r mi t a c c es s to i n te r v i e w ee s ), m ut ua l l y s u i t a bl e t i m es f or c o n duc tin g i n te r v i e w ee s a t i n s t i t u ti on s , an d s ui ta bl e l o c a ti ons fo r c o n du c ti ng i n te r v ie w s . T h e p i l ot s t ud y als o h el pe d t o f a m i l i a ri z e th e i nt e rvi e w e r w i th th e a u di o r e c o r di ng e q ui p m e nt. Th e mi c ro p ho n e h ad to be at ta c he d i n a c er ta i n wa y, at a s ui t ab le d is t an ce f r om t h e mo ut h wi th no th i ng o bs t ru c ti ng t h e v o i c e on i ts w a y t o th e m i c ro ph o ne . T h e i nt e r vi e we r als o h ad to l e ar n h o w t o a ss ure i n te rvie wee s t ha t rec o rd in g t he i r u tt era nc es ha d no si nis t er motives . I t b ec a m e c l e a r d ur i n g t h e pi l o t s tu d y th a t t he i n te r v i e we es w e r e no t u s ed t o g i v i n g el a bo r at e di s c ou rs es a b ou t a bs tr a c t i d eas c on c e rn i ng th ei r l i v es . It s ee m e d t h e y w e r e m o re fa m i l i ar w i t h c o nc re t e t ho u gh t s an d t hu s t h e y wo uld fe el th ey h a d s a i d e v e r y th i ng th e y ne ed e d s a y i ng i n a fe w s e nt en c e s . It w as b y e nc ou r ag i n g t h e m to s p ea k m o r e a nd by a s k i n g th e m
