The impact of HIV on women living with HIV and their families in low- and middle-income countries: A systematic review
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Abstract
HIV infection adds a significant burden to women in low- and middle-income countries (LMICs), often leading to severe detrimental impact, not only on themselves, but also on their families and communities. Given that more than half of all people living with HIV globally are females (53%), this review seeks to understand the impact of HIV infection on women living with HIV (WLHIV) and their families in LMICs, and the interrelationships between one impact and another. A systematic review was conducted to find literature using the following databases: Medline, PsycINFO, CINAL, Emcare, Scopus and ProQuest. Research articles were included if they met the following inclusion criteria: conducted in LMICs, published in English language between January 1 st 1990 and October 31 st 2021, had full text available, involved WLHIV (married and unmarried), and focused on the impact of HIV on these women and their families. Critical appraisal tools developed by Joanna Briggs Institute (JBI) were used to assess the methodological quality of the studies and thematic narrative synthesis was used to analyse the findings. A total of 22 articles met the inclusion criteria. The review showed that HIV has a range of negative consequences on WLHIV and their families including: (i) psychological impact, (ii) poor physical health and intimate partner violence, (iii) social impact, and (iv) economic impact. The findings indicate the need for targeted interventions, specific to WLHIV, that address the inequity and discrimination they face. These interventions should also incorporate education and sustainable support structures for WLHIV and their families.
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Review Artic le
The impact of HIV on women living with HIV and
their families in low- and middle-income countries: A
systematic review
N e l se n siu s Kl a u F a uk 1,2 , Li ll i an M w a nr i 1 , Ka ren H aw ke 3 , Le ila Mo ha mmad i 4 , Pau l R us sell Wa r d 1
1 T o r re ns Univ ersit y Austr a li a, Adel ai d e, 8 8 Wa ke fi e l d S t , Ade la i d e S A 5 000, Austr a lia.
2 Ins titute of Reso ur ce G o v er n a n c e and S o c i al C hange, J l . R. W. Mo ng i ns idi I I, No. 2, Ku p a ng,
I n do ne si a , 85 221.
3 Ab origin a l C o m m u nitie s an d F am ilies Resear c h Allia n ce, S out h Aust r alian He alth a nd Me di c a l
Resear ch I ns titute , A ustrali a .
4 C olle g e of Medi cine a n d Pu bli c He al t h, Flinders U nivers ity, GP O B ox 21 0 0, Ad e laid e 5 0 01 , Aus tr ali a .
Ab str a c t: HIV inf ecti on ad ds a s igni f i ca nt burd en t o w o m e n in lo w- a nd mid dle-in c o m e co u ntr i es
(LMI C s), ofte n le a ding t o sev e r e d etri m e nt a l i m p a c t , n ot o nly on t hem s e l ves, but a ls o o n their f a m i lies
a nd co m m u niti e s . Given that m or e tha n half o f a ll pe ople livi ng wit h HIV g lob all y ar e f e m ales ( 5 3 %) ,
th is r e vie w s eeks to u nde r st and the i m p a c t o f HIV i nf e c tio n o n wom e n living with HIV ( WLH IV ) and
their f a mili es in LMI Cs , a n d th e int e r re la tio ns hip s betw e e n on e i m p ac t a nd a n oth e r . A sys tem ati c
review w as c o n d u cted to fi nd liter a ture using t he f ollowing d at a bases: M e dline, PsycI NF O, CI N AL,
E m c a r e , S c o p u s a n d P r o Q u e s t . R e s e a r c h a r t i c l e s w e r e i n c l u d e d i f t he y m e t t h e f o l l o w i n g i n c l u s i o n
crit e r i a : c o ndu c t ed i n LM I Cs, p ub lis he d in E nglish l ang u a g e b e twe en J an u ary 1 st 19 90 a n d Octo b e r
31 st 2 0 2 1 , ha d f u l l t e x t a v a i l a b l e , i n v o l v e d W L H I V ( m a r r i e d a n d u n m a r r i e d ) , a n d f o c u s e d o n t h e
i mp a ct of HIV o n t he s e w o m en a nd t he ir f a m ilies. Criti c al ap pr ais al t ools d evelo ped by Jo a nn a Briggs
Inst itute ( JBI ) were used t o ass e s s the m eth odol o gi c a l qu ality of t he s tudie s a nd the m ati c n ar r ative
synthesis w as us e d to an alys e the findi n g s . A tot al of 2 2 a r ti c les m et th e in cl usion c rit e ri a . The r e vi ew
sh ow ed that HIV has a r ange of neg a ti v e c o ns eque n ces on W L HI V and t h eir f a m ilie s in c ludi ng: (i )
psy ch ol ogi c al i m p a ct , ( ii) p oo r p hysi cal he a lt h and i nti m a te p a r t ne r vi o len ce, (iii ) s oci al i m p ac t, and
(iv) e con o m i c im p a c t. T he f indings indi cat e the need f or t a r geted int erv e nti ons , spe c ifi c t o WL HIV ,
that a ddress th e i ne quity a nd discri m in ati on the y f a c e . These inter vent ions sh o uld also in c or p or ate
edu cati o n a nd sus tain abl e s up p ort str u c t ur e s f or W L HIV a nd t heir f a m ilie s .
Ke y w or ds : W L HI V; HIV i m p ac t; HIV - af f ected f a m ilies; low- a nd m iddl e -in c o m e cou ntr ie s
1. I nt rodu ct io n
The Hu m a n I m m u n odefi cien c y V i r us ( HIV) and t he Ac q uired I m m u n e De fi ci e n c y Sy ndr o m e
(A I DS ) h a ve b een a worldwid e p ubli c healt h pr obl e m f o r c l ose to f o u r dec ades ( 1 ) . The 2 0 20 U NAI D S
rep ort s ho ws an esti m at ed 37. 7 m illio n p eo ple livi ng with HIV (PL HIV ) w orld wide , 1. 7 m illio n ne w
diag nos e s and 68 0 ,0 0 0 AI D S-rel a ted d e at hs in 2 02 0 ( 1, 2). Gl ob a lly, 5 3% of t he e stim at ed n u m b e r o f
P L H I V a r e w o m e n a g e d 1 5 a n d o v e r ( 2 ) . I n s u b - S a ha r a n A f r i c a ( S S A ) w he r e t h e m a j o r i t y ( 7 0 . 5 % ) o f
P L H I V r e s i d e , w o m e n l i v i n g w i t h H I V ( W L H I V ) r e p r e s e n t e d 6 3 % o f H I V i n f e c t i o n s a m o n g a d u l t s
a ge d 15 a n d o l de r (1 , 2) . T he c u rr en t rep o r t a l s o sho ws a n e st ima t e d 42 00 wom e n ag e d 1 5 -24 y ea r s
b e c o m i n g i n f e c t e d w i t h H I V e v e r y w e e k a n d a r e t w i c e l i k e l y t o b e l i v i n g w i t h H I V t h a n m e n i n S S A
( 2 ) . I n 2 0 2 0 i n A s i a a n d t he P a c i f i c r e g i o n , W L H I V a g e d 1 5 - 2 4 y e a r s a n d 2 5 - 4 9 y e a r s r e p r e s e n t e d 1 1 %
a nd 1 9% , respe c tiv ely , of t he tot al n u m be r of 5.8 m illio n PL HIV ( 1 ) . Gl ob all y, a rou nd 5 0 00 w o m en
a ge d 15 -24 y ea r s b ec ome i nf ect e d wi t h HIV e ve r y we ek (1 ) .
I t i s k n o w n t ha t c o m p a r e d t o m e n o r o t he r k e y - a f f e c t e d p o p u l a t i o n s s u c h a s t r a n s g e n d e r
p o p u l a t i o n s a n d m e n w ho ha v e s e x w i t h m e n i n l o w - a n d m i d d l e - i n c o m e c o u n t r i e s ( L M I C s ) , w o m e n
ge n er ally f a ce a gre a t er bur den of HIV i m p a ct ( 3- 9). L MI C s are t he co untr i e s def i ned by t he World
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NOTE: This preprint reports new research that has not been certified by peer review and should not be used to guide clinical practice.
B a n k a s t ho s e w i t h g r o s s n a t i o n a l i n c o m e p e r c a p i t a b e t w e e n $ 1 , 0 4 5 o r l e s s ( l o w - i n c o m e ) , $ 1 , 0 4 5 a n d
$ 4, 0 95 (l ower m iddle - c o m e) and $ 4, 0 96 a nd $1 2, 69 5 (u p per m iddl e -in c om e ) ( 1 0 ). Pr evio us studies
ha v e rep or te d t hat W LHIV i n LM ICs e xpe r ien c e co nsider able psy ch ol ogi cal c hallenges, i n cludi ng
depr ession, str e s s, anx iety and f ear d ue to var ious c o n cerns f aci ng them foll owi n g th e HIV di ag nosis
( 1 , 1 1 , 1 2 ) . W L H I V a r e a l s o r e p o r t e d t o e x p e r i e n c e a n u m b e r o f s o c i a l c ha l l e n g e s s u c h a s s t i g m a a n d
discri mi n ati on by ot hers or no n-in fe c t ed p eople wit hin f am ilies, co m m u nitie s, work pl ac e s and
h e a lt hc a r e s e tt i ngs , m ani festing in v ari o us dis c r im in at ory a nd stig m atising attitu des a nd beha vio urs
( 7, 1 1, 1 3) . A la c k o f kn o wled ge about ho w HIV is tr a ns mitt ed a nd pr event e d an d the fe ar of
co ntr acti ng HI V thr oug h p hysi c a l, s oci al a nd h e a lth c a re - relat ed cont a cts h a v e o ft en bee n repor t e d as
t he m a i n s u p p o r t i n g f a c t or s f o r s u c h s t i g m a a n d d i s cr i m i n a t i o n a g a i n s t W L HI V ( 1 4, 1 5 ) . F o r e x a m p l e ,
t he s e l e a d t o W L H I V b e i n g n e g a t i v e l y l a b e l l e d , a v o i d e d , r e j e c t e d a n d e x c l u d e d b y o t he r s w i t hi n
f a m ilie s , co m m u nities a nd he alt hc ar e se ttings due to th eir HIV -p o s itive st atus ( 16- 1 8 ). Re ceivin g a
diag nos is an d l ivi ng with HI V a ls o hav e n eg ati ve e con o m i c cons equ e n c es on wo m e n and their f a m ily
thro ug h sev e r a l m e ch a nis ms , s u ch as wo m en ’s in ability to wo r k du e to p o or physi c a l he a lt h
co nditio n, loss o f e m pl oy m ent le ading a redu ction i n or los s of f a m ily i n c o m e s , a nd in c reas e d he a lt h
e x pe n d i tu r e (9 , 19 , 20) . Such e co nomic co n s equ e nc e s hav e b ee n re p or te d to a l so l e ad t o fo o d
inse c ur ity with i n the f a m ily of W LHIV , f or c e d sale of f am ily pro perties in cludi ng la nd and ho uses to
c o v e r h e a l t hc a r e a n d l i v i n g e x p e n s e s ( 9 , 1 9 , 2 1 - 2 3 ) . H I V d i a g n o s i s a m o n g w o m e n o r m o t he r s a l s o
ca us e s neg ative o ut co m es f or ed u cati on a nd wellbe i ng of t heir childr en ( 1 9, 2 4 , 2 5 ), and c hild- m oth e r
s e p a r a t i o n o r c h i l d - p a r e n t c o n f l i c t w h i c h c a n ha v e a n e x t r e m e l y d e t r i m e n t a l e f f e c t o n t he c h i l d r e n ’ s
men ta l hea l th (20, 25) .
D e s p i t e p r e v i o u s s t u d i e s r e p o r t i n g ho w H I V a f f e c t s t he l i v e s o f P L H I V , t o d a t e , t h e r e ha v e b e e n
no publish e d s yste m a ti c re vie ws, w hi ch exa m in e t he i m p a ct H IV h as o n WLH IV and th eir f a m ilie s in
L M I C s . T hi s s t u d y a i m s t o i m p r o v e o u r u n d e r s t a n d i n g o f H I V i m p a c t o n W L H I V a n d t he i r f a m i l i e s ,
t he m e c h a n i s m s t hr o u g h w hi c h H I V i m p a c t i n f l u e n c e s t he i r l i v e s a n d i n t e r r e l a t i o n s hi p s b e t w e e n o n e
i m p a c t a n d a n o t he r . I t i s a l s o c r u c i a l t o g a i n g r e a t e r u n d e r s t a n d i n g o f t he c o n s e q u e n c e s o f a n H I V
diag nos is for w o m en a nd th e ir f am ilies, and ide ntify t he dr i ve r s behind t hese co n sequ e n c e s g ive n t he
high bur de n of disease a m o ng WL HIV . U nde r st a nding a nd ide ntifyi ng HIV im p ac t will sup p ort
furt her r ese a r ch a nd a dv o ca cy ar oun d e du c at ion, t ar geted e v ide n ce -b ased inter vent i o ns , and
h e a lt hc a r e sys tems tha t a ddress th e sp e cif ic n e eds of WLH IV and their f a m il ies.
2 . M e t ho ds
2.1 . T he s y ste m atic se a rc h of lite r atur e
We perf or m e d a n initi a l s ear c h of r e le v a nt ke y t er ms g uide d by th e PI C O (P o pul ati on,
Inter ve ntion, C o m p a ris o n a nd O ut co m es ), a fr a m ew ork that ha s been used to in f o r m e vide n ce b a s e d
p r a c t i c e ( 2 6 ) . T he m a i n s e a r c h w a s t h e n d r a f t e d a n d r e f i n e d i n M e d l i n e u s i n g b o t h M e d i c a l S u b j e c t
Headi ngs (M eS H ) ter m s a nd keyw ords as d escri be d i n the in c lusio n cr ite r i a s ect ion be l o w. We t hen
tra nslat ed the s ear c h i nto m u l t iple d at abases, in cl uding M e dlin e, P sy c I NF O , C I N AL, E m c ar e , S co p us
a nd Pr o Quest.
2.2 . In clu sio n c rite r ia
S t u d ie s we re inc l u de d i f t h e y : ( i) we r e pu b l i s he d i n En g l i sh a n d b e twe en Ja n 1 , 1990 an d Oc t 31 ,
2 0 2 1 i n c l u s i v e t o c a p t u r e e v i d e n ce o n t h e i m p a c t o f H I V o n w o m e n w hi c h s e e m e d t o e m e r g e in 1 9 9 0 s
(A p pendix 1); (ii) were co ndu ct e d in L MICs (b ased o n the c l ass ifi cati on m a de by th e W o r ld Ba nk) ;
(iii) in vol ved WLH IV ( m a rri ed and u n m a rri ed); a nd (iv ) ai m ed to id enti fy ps yc ho-so c i al, p h ysi c al,
he a l t h, e c o n o m i c a n d e d u c a t i o n a l i m p a c t o f H I V o n W L H I V a n d t he i r f a m i l i e s ( F i g u r e 1 ) . T he
ke yw ords wer e used in co m bi n a t ion us ing Bo ole an op e r at or syste m i n cludi ng A ND and O R . An
exa m pl e of f ull el ectr oni c s ear c h st r ate g y in S C O P US in p re s e nt ed b elow and t h e f ull ke y wo r ds or
sear ch s tr ate gy i n a ll d at a bas e s c an be f ound i n Ap pendix 1.
TITLE-AB S-KEY (( HIV* o r "H u m an i m m u n o d efi cien cy virus " or AI DS) ) A ND TITLE-ABS -
KEY ((Wi ves or W ife or M o t hers or fe m al e* or girl* or w om e n or w o m an )) AN D T ITLE-AB S -
K E Y ( ( p r e d i c t o r * o r " r i s k f a c t o r * " o r d e t e r m i n a n t * o r " s e x u a l b e ha v i o u r " o r " m u l t i p l e s e x
p a r t n e r * " o r e x t r a m a r i t a l * o r " s e l l * s e x * " o r " t r a n s a c t i o n a l s e x " o r p r o s t i t u t * o r " s e x w o r k " o r
. CC-BY-ND 4.0 International licenseIt is made available under a
is the author/funder, who has granted medRxiv a license to display the preprint in perpetuity. (which was not certified by peer review)
The copyright holder for this preprint this version posted April 16, 2022. ; https://doi.org/10.1101/2022.04.16.22273930doi: medRxiv preprint
co ndo m * or " uns a fe sex" or "u npr ote cte d s e x" or k n owl edg e or "s oci al in flue n c*" or " pe e r
i n f l ue nc *" o r "s oc ia l no rm*" o r cu l t u r* o r so c ioc u l t u r a l * o r so c io e con o mic* o r " so c ia l
en v ir o nm e nt al* " or s oci oenvir o n m e nt* or s tig m a or dis c r imi n at * or " psy c hologi ca l im p act " or
"s oci al i m p act " or e du c a tion o r "s cho ol attend a n ce" or " withd r aw * fr om s cho ol" or str e ss or
distr e s s or de pr e s sion or "ps y choso ci a l i m p a ct " or e m pl o y m e nt or " los s of j ob " o r in c o m e or
"n utr itio n s ec urity" or " fo o d i ns ecurity " or he alt h o r "p hysi c a l h e a lt h" or w e llbein g or
"he alth c a re a cc e s sibility*" or a bsen t eeism or reli gi o* or co ns e q ue n ce* )) AN D TITLE-AB S -
KEY ((f a m ily* or f a m ilies)) A N D TITLE-AB S -K EY((( D ev e lo pin g or " Le s s dev e lo p ed" or "lo w
resour c e* " or dis a d va nt a ge d or "reso ur c e li mited" or p oor o r "l o w* or middl e in co m e* ") W / 0
( c o u ntr * or re gion* or n atio n ? or a re a* ) ))
2. 3. Sel ectio n of the studies and methodologic al q uali ty assessment
3, 37 1 a r ti c les r e t rieve d fr om the d a t ab a s e s a nd e ig ht f r o m google t hro ug h m a n u a l sear c h wer e
coll ated and i m p orted int o E nd not e so ft w a r e ( 27 ). A fter re m o vi ng 1, 0 40 du pli c at e s , 2, 3 39 tit l es a nd
abstr a cts we r e s c r ee ne d by t w o a s sessor s ( NKF a nd LM ), furt her r em o vi ng 2, 2 17 arti cl e s not m e eting
the incl usion crite r i a. The a s sessm ent o f f ull tex ts of rem ai nin g 12 2 ar ti c les led to a furt her r em o v al o f
1 01 arti cl e s n ot m e e tin g in cludi ng cr ite r ia a nd o n e arti cl e n o t m eeting m et ho d o logi cal q u ality. T he
refer enc e listing o f the 2 0 ar ti c les w as s crut i nis e d and t wo a ddition al arti cle s wer e obt a i ned. T he f u l l
tex ts o f t hese tw o arti cle s w ere also a sses s e d to dete r m i n e th e ir eligibility . Twent y -t wo a rti c les
fulfilling the in c l us io n c r ite r ia an d the m et hodo l ogi cal q u ality, we r e f in ally in cl ude d in th is r evie w
(Figur e 1). T he assess ment f or m eth od ologi c a l qu ality w as per f or m e d using c rit ical a p pr aisal t ools
deve l o ped b y J oa n n a Briggs Ins titute (JB I) f or s tudy d esign ( 2 8). T he m et hod ol ogi cal q u al it y
a s s e s s m e n t w a s p e r f o r m e d b y t w o a s s e s s o r s ( N K F a n d L M ) , a n d a n y d i s a g r e e m e n t b e t w e e n t he m
w a s resolv e d t h r o ug h dis cus sion. The a p pr aisal for m s f or q u alit ative , c ohort , cr oss sec tio n al and c a s e
rep ort s tudie s co m p ris e d t en, ni ne , ei ght a n d e ig ht qu estions r e s pecti ve ly ( Ap pendix 2 ). T he
q u e s t i o n s w e r e a b o u t t h e q u a l i t y o f t he s t u d i e s , f o r w hi c h e a c h q u e s t i o n r e c e i v e d a r e s p o n s e o f Y e s ,
N o, Un c l e ar, a nd N ot Ap pli cabl e.
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Fig ur e 1. PR ISMA Fl ow diagr a m o f sys te ma tic l ite r a tur e s ea rch: re c ords id e n ti f ie d , scr ee n e d, el igi b le an d
includ e d i n the re vi ew .
2.4 . Data e xtr ac tion an d an aly sis
Guide d by t he T ho m as a nd H ard en ’s fr a m e wor k ( 2 9 ) , a t he m a ti c a n a lysis of sele c te d arti cle s was
sys te m ati c ally per f or m e d a s f ollo ws: (i) con du cti ng a line by line op en codi ng, with one ass e s sor
(NKF ) ex t r ac ting f ree c o d es fr o m th e fi nd ings of ea ch a rti cle , (ii ) dev e lo pin g de s c ri ptive t hem es w her e
the fr ee codes with si mil a r ity we r e or ga nised or gro u pe d togeth er, (iii) revie wi ng (se co nd ass e s sor
LM) of t he initi al d es c r iptiv e t he m es, a n d th oro ug h ly dis cus sing ( by b oth a s sessors – NKF a nd L M)
a n y d i s c r e p a n c i e s , a n d ( i v ) f i n a l i s i n g t he r e v i e w o f d e s c r i p t i v e t h e m e s a n d s u b t h e m e s , w i t h b o t h
a s s e s s o r s d e c i d i n g t he f i n a l a n a l y t i c a l t he m e s f o r t h e c u r r e n t s t u d y ( 2 9 ) . T h e f i n a l v e r s i o n w a s a g r e e d
by all aut hor s foll owing fur t he r r e fi ne m en t o f t he t hem e a nd subth e m e he adings .
3. R esu lt s
3.1 . Descr iption of the included stu dies
Tabl e 1 s u m m a ris e s the d e s cript ive c h a r act e r istics of t he 2 2 i n cl ude d ar ti c les. O f the 22 arti cl e s ,
1 2 s t u d i e s ( 1 3 a r t i c l e s ) w e r e c o n d u c t e d i n A s i a a n d t he P a cif i c r e gio n ( 6- 9, 11, 1 6, 20 , 3 0- 35 ), s ix i n
A f r ic a (5, 12 , 1 3, 3 6 -38 ) a nd on e st u d y ( two ar t ic l e s) i n the Ca r i bb ea n (19, 25) . One s t u d y (39 ) co l l e c te d
dat a fro m p a r ti c ip a nts in Zi m b abwe a n d the U S A and prese nted th e results of the s e two gr ou ps
sep ar ate ly. F or t he p ur pose o f t his review, o nly t he stu dy r e s ults a bout th e p arti c ip a nts in Zi m b abw e
we r e incl uded , a s this fits t he in c lusio n crit eri a . Of t he 2 2 arti cles, thirteen we re q u a lit ative studies
colle c ti ng dat a thr o u gh one-o n-o ne int er v ie ws ( 5 , 6, 9, 1 2, 16, 1 9, 25, 3 1- 35, 3 7 ). Nine ar ticles us e d
q u a n t i t a t i v e m e t ho d s ( 7 , 8 , 1 1 , 1 3 , 2 0 , 3 0 , 3 6 , 3 8 , 3 9 ) , o f w hi c h s e v e n w e r e c r o s s - s e c t i o n a l ( 7 , 8 , 1 1 , 1 3 ,
36 , 38 , 3 9) an d t wo we re pr o spe c t i ve coho r t s tu d ie s (2 0 , 30 ) . A t o ta l of 2 ,4 44 WLHI V pa rt i c ipa t e d i n
t he s e st u d i e s, o f wh om 1 90 a n d 2 ,25 4 r e s p e c t iv e l y we re i nvo l v e d i n qua l i ta t i v e an d q uan t i t a t iv e
s t u d i e s . S e v e r a l s t u d i e s i n v o l v e d a c o m b i n a t i o n o f W L H I V a n d c hi l d r e n ( 2 5 , 3 9 ) , H I V n e g a t i v e
wo m en or w om e n with u nk no wn HI V s ta t us ( 1 3 ) and HIV po s itive m en ( 8 , 3 3 ) , howe ve r o nly the
results a bo ut WL HIV or th e views of W L HI V w e r e in c l uded i n this review (T abl e 1 ). T he s a m pl e s iz es
o r t h e n u m b e r o f W L H I V w ho p a r t i c i p a t e d i n t he q u a l i t a t i v e a n d q u a n t i t a t i v e s t u d i e s r e v i e w e d
v a r i e d f r o m 1 t o 3 0 , a n d 5 0 t o 6 3 3 p e o p l e , r e s p e c t i v e l y . T he p a r t i c i p a n t s w e r e r e c r u i t e d u s i n g
co nv eni e nt, p urp os iv e or sn o wb al l s am pl ing te chni qu es. Eigh t studies in vol ve d o nly m ar ri e d w o m en
( 7 , 9, 1 1- 1 3 , 2 0 , 3 0 , 3 4 ) , n i n e i n v o l v ed a c o m b i n a t i o n o f m a r r i ed , w i d o we d a n d s i n g l e w o m e n ( 6 , 8 , 1 6 ,
3 1, 3 2, 3 6-39 ) a nd one study inv ol ve d s ingle wom e n ( 3 3). F our st udie s d i d not r ep ort m arit al stat us of
t he pa rt ic ipan t s (5 , 19 , 25 , 35) . Pa rt ic ipan t s ’ a g e ran g e d from 15 to 58 y ea r s o l d , how ev e r , t hre e s t u di e s
did not rep ort p arti cip a nts ’ ag e ( 8 , 1 9, 2 5 ). The qu alit ative stud i es us e d co ntent an alysis (5, 1 2 , 3 1 , 3 2 ,
35 ) a n d t he mat ic an a l y s i s ( 6 , 16 , 19 , 25 , 3 3 , 34 , 3 7) ap p roac h fo r da ta ana l y si s, howe v e r on e s t ud y
emp l o y e d a comb in a t i on o f t hema t ic ana l y si s , a nal y s i s o f e p i s o de a nd i d e n t if i ca t ion o f pa rad ig m
c a s e s ( 9 ) . T he m a j o r i t y o f t he q u a n t i t a t i v e s t u d i e s u s e d o n e o r a c o m b i n a t i o n o f b i v a r i a t e a n d
m ulti v ari ate li near or l ogistic r eg r e s sio n m od e ls f or d at a an alysis ( 7, 1 1, 1 3, 30, 3 6, 3 8, 39 ).
Tab l e 1 . Des cript io n o f the inclu ded studie s in alp h ab e tic al or der.
Au t h o r / Y ea
r
Stu dy
lo c atio n
Study d e sig n/st udy
ai m
Number of p articip a n ts / ty p e
of p a r tici p a nts Ana l y s i s M a in t h eme s o f t he i m pa c t H IV o n
WLH IV a nd th eir fa mil ies
1. As ha ba .
et a l ., 20 17
(5)
Ugand a
- Q u a l itat i v e d es i g n
- Metho ds :
• In-dep th
inter v iew
- Aim:
• To e x pl ore
experie n c es of
depre ssi on
among W LWH
- 20 p o s tpa rtum WLH IV
- Ma r it al st atus:
• N o t re porte d
- Pa r tic ipan ts’ ag e:
• Medi an ag e : 3 3 ye ars
• In ter -Qua r t ile r a nge ( IQR):
2 8 -3 5 ye ars .
- Pa r tic ipan t r ecrui tment
Conten t
anal y s is
The impact of HIV on WLHIV
(i)
Exte rn al sti gm a a nd d i s crimina t io n
• From hea l th c ar e pr o fe ss ion als
• From c o mm uni ty mem bers
(ii ) In tim ate p a rtn e r violence
(ii i) Psychologic al imp a c ts
• Di s tres s a nd fe a r o f ma ter na l
and chil dren’s he al th an d
future
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durin g pregn a ncy
a n d po st p a rt u m .
te chn ique:
• Purpo s i v e s a mpl i ng
te chn ique
2 . A zh ar ,
20 18 (16 ) In d i a
- Q u a l itat i v e d es i g n
- Metho ds :
• In-de pth inte r v iew
- Aim
• To exp l ore how
s tig m a, s oci al
is o l a t i on , an d
de press i o n a f fe ct
c isgender w omen
li ving with HIV in
Hy d er ab a d, I nd i a
- 16 W LHIV
- Ma r it al st atus:
• Majori ty : w idowe d
• Som e : m arr i e d
- Pa r tic ipan ts’ ag e:
• B et w e en 18 to 50 y ea r s
ol d
• Mean age : 37 .2 5 ye ars
- Pa r tic ipan ts we re re crui ted
using purpos ive a nd sno w bal l
samp l ing te chniq ues
Thematic
anal y s is
The impact of HIV on WLHIV
(i) S o c ia l is ol at ion by f a m ily memb e rs
(ii ) Ex t e rnal st ig m a an d d iscr iminat ion
• From f am i ly m e m b er s
• From hea l th c ar e pr o fe ss ion als
( i i i ) Pe r c e i ve d s t i gm a
• The be lie f abou t ne ga ti v e
a tt i tu de s a n d b e ha v i our o f n on -
i n f e ct ed p eo p l e t o w a r d s
PLHIV
(i v) P s y c hol og ic a l i mp a c t
• Fee lin g s ad an d b a d du e to
c o ntr ac ting H IV
• Fee lin g embar r asse d due t o
c h ang e s in phy s ic al a ppe ar an c e
• Fea r of disc r im in ati on
3. B a um a n ,
et a l ., 20 06
(39 )
Zimb a bwe
and N ew
York, U S A
- Qua nti t ati ve de si g n:
• C ro s s-se ctional
st u d y
- Aim
• To m e a s u r e
pe rsonal a ss ist iv e
c a re th e child
p r ov id ed; ot h e r
househol d
r esponsibil it ies ;
hours/d a y chil d r en
s p e nt on chore s;
a n d pa r e nta l / ch il d
ment al he al th.
- 50 W LHIV an d 50 chi l d re n
(one chil d per mo th e r )
- Ma r it al st atus of the m oth e rs :
• 8 8 % of m o the r s i n
Z i m b ab w e we r e s i n gl e
moth e rs (m o st ly
wi d o we d )
- Pa r tic ipan ts’ ag e:
• Children we re 8 t o 16
yea rs of a ge
• M e d ia n a g e o f
c h ildre n in Zimb a bwe :
12 .4
• Mean age of m o th e rs
in Zim b abwe : 3 8
- Pa r tic ipan t r ecrui tment
te chn ique:
• Par ticip a n ts we re
re cruite d thr ou gh
FACT, a comm uni ty -
ba s e d A IDS
c o unsellin g and
e du c ati onal
o r ga niz a ti o n
χ2 t e s t s ; t -
te sts ;
Pears on
co r rela ti o n
s; a nd both
lin e a r an d
lo g ist ic
regre ssi on
The impact of HIV on families of
WLHIV
(i) S o c ia l imp a c t on chi l dre n
• Children t ook t o o m uch
re spon s ibil it y f or ho use hol d
ch o r es
• In abil it y t o par tic ip a te in afte r-
s cho ol a ct i vi ties
• In abil it y t o d o ho mew or k a t
le a st once in a while
• Miss i ng soc i a l i z ing with
fr i e nd s
(ii ) Child-par ent rel a t i onship c o n flic t
4. B enn e t ts,
et a l ., 19 99
(30 )
Tha i l and
- Qua nti t ati ve de si g n:
• Prospe ct ive cohor t
st u d y
- Aim:
• To a ss ess the
impa c t of HIV on
the f am ily .
- 12 9 p os tpartum WLH IV
- Ma r it al st atus:
• Marr ied
- Pa r tic ipan ts’ ag e:
• 3 3 % of the women
w ere l e ss th a n 20
yea rs of a ge
- Pa r tic ipan t r ecrui tment
te chn ique:
• Par ticip a n ts we re
re cruite d us ing
c o nven ient s a mplin g
te chn ique
• Par ticip a n ts we re par t
M u l t iva ria t
e l o gis tic
regre ssi on
anal y s is
The impact of HIV on WLHIV
(i) Psycho l og i c a l im p act
• Depres sion
• Worry
• Soc iode mogr a phic a nd h e al th-
r ela ted fa c to r s a ss o c ia t ed wi t h
de p r ess ion a nd w orr y:
• Fac tor s a ss o c iate d w ith
de p r ess ion: a d vanced s t ag e of
H IV d i s e ase, a re du c t io n in
family in c o me, no l o nger in a
re l a t i onshi p wi th their p a r tner
and those who rep or ted their
husba nds t o be dec e ased o r in
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of a pr ospect i ve c oho r t
study of m o the r -to -
c h ild t r a nsmission
among 2 95 H IV-
infec te d p r egnant
wo m e n a n d t h e ir
new bo rn chi ldren
poor he a lth
• Fac tor s a ss o c iate d w ith wor ry:
l o w e r e d u c a t io n at t a in m e n t ,
prim a r y c a ret ak er fo r childre n,
H IV infe ct ion st a tus o f the
c h ild , ha v ing H IV-infec te d
c h ildre n, n ot ye t disc lose t o
H IV st at u s t o other s, and the
fe eling th a t H IV s t atus is
s o methin g th a t f amily w o uld
be ash a med of
5 . B ri t ain, e t
a l 20 17 ( 36)
South
Af r i ca
- Qua nti t ati ve de si g n:
• C ro s s-se ctional
st u d y
- Aim:
• To ex a min e f a ct ors
assoc i ate d wi th
s o c i a l supp or t a n d
s tig m a am ong
p r eg n a nt wo m en
init i ating
an tire tr o vir al
the r a py i n the
We ste rn C ape,
South Afr ic a; a n d
e x plo re ass oci ati ons
wi t h d ep re s si ve
s y mpto ms
- 62 3 H IV-infecte d p re g n an t
W L HI V i n it ia ti n g AR T
- Ma r it al st atus:
• 25 6 m ar r i ed
/cohabi ting
• 36 7 si n g l e s
- Pa r tic ipan ts’ ag e:
• Medi an ag e : 2 8 ye ars
• In ter -q ua rt ile r a nge
( IQ R): 2 4– 32 ye ars
- Pa r tic ipan t r ecrui tment
te chn ique:
• Par ticip a n ts we re
re cruite d thr ou gh a
la rg e pr imary c a re
ante n a t a l c linic in the
former township of
Gugulethu in C a pe
Town, S ou t h Afr ic a
M u l t iv a ria
ble line ar
regre ssi on
mo d e l s
The impact of HIV on WLHIV
(i) HIV -rel a ted st ig m a
• In te rnal ised sham e
• S o cia l r ej ect io n
- Higher le v e ls of both s oci al
re ject ion and in tern al i s ed
s h am e we re s igni f ic a nt ly
assoc i ate d wi th l ow er
pe rceive d a va il a b ilit y o f
instrument al and em o tion a l
s u pport
- Incre a s ed av a i l ab i li ty o f b o th
instrument al and em o tion a l
s u pport was s ig ni fic an t ly
assoc i ate d wi th l ow er re p o rte d
le v e ls o f soci a l re jec ti on and
i n t e rn al iz ed s ha m e
(ii ) Psychol og ic a l im p ac t
• Depres sion
• Soc iode mogr a phic f a c t o rs
assoc i ate d wi th d e pres si o n
- Single m a r it al st atus, a n
unin te nde d p r e gnancy,
a n d h i g h e r l ev el s o f so cia l
re ject ion and in tern al ized
sh a m e
6. C h i , e t a l .,
20 10 (6 ) Vietn a m
- Q u a l itat i v e d es i g n
- Metho ds :
• In-de pth inte r v iew
- Aim:
• To exp l ore the ir
r eflec ti o ns,
c o nce rns a nd
d i l em ma s r ela t ed t o
r e p r o d uc t i ve
de cisi on s
- 13 W LHIV
- Ma r it al st atus:
• 7 m ar r i ed
• 6 w i d o we d
- Pa r tic ipan ts’ ag e:
• 3 0 ye ars o l d a n d o l de r
- Pa r tic ipan t r ecrui tment
te chn ique:
• Par ticip a n ts we re
re cruite d us ing
c o nven ient s a mplin g
te chn ique
• Par ticip a n ts we re par t
of a l a rge r r ese a r ch
projec t th at
inves tig ate d
re producti ve de c isi o ns
among W LH IV
Thematic
anal y s is
The impact of HIV on WLHIV
(i) Psycho l og i c a l im p act
• Fea r of dy in g le ading t o
moth e r choosing to termin ate
pre g nan c y
• Fee lin g worr ie d about
tr ansmit ting H IV t o unb o rn
baby
• Fee lin g worr ie d about poo r
e con om ic condi ti on and
i n a b il it y to ta k e ca r e o f t h e
c h ild
(ii ) Perc e ive d s tig m a
• Fea r of c h il dre n being
s ti gm atise d and d isc rim in ate d
w ith in the c om munity du e to
moth e r ’s HIV s ta tus
• Fea r of c h il dre n being den ied
fr o m school a dmissi on
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The impact of HIV on families of
WLHIV
(i) Exte rn al s tigma and disc r im in ati on
aga inst childre n a t scho o l
• Te a che r told other c h il dre n not
to pla y w ith them.
• Children we re pl a c ed at a
se p a rat e d e sk b y t e a c h er a n d
isol ate d fr o m fr iends 7 . Conser v e ,
et a l ., 20 14
(25 )
H a it i
- Q u a l itat i v e d es i g n
- Metho ds :
• In-de pth inte r v iew
- Aim:
• To ide nt i fy the
fac t ors influ e ncing
ma tern a l H IV
s erost a tus
disc l o s u r e, e xamin e
the b re a d th of
ma tern a l H IV
s erost a tus, and
unders t a nd t h e
impa c t of d i s cl osure
on mothe rs an d the
c h ildre n.
- 25 H IV-posi ti ve m o thers an d
26 c h i ld r e n ( H I V- n eg a tiv e)
- Ma r it al st atus of the m oth e rs :
• N o t re porte d
- Pa r tic ipan ts’ ag e:
• Children we re 1 0 t o 1 7
yea rs of a ge
• A g e of the m o thers
wa s n ot re p o rt ed
- Pa r tic ipan t r ecrui tment
te chn ique:
• Par ticip a n ts we re a
par t of a l arg e r
fe a s ibi li ty stu dy of a
psychosoci al support
inter ve nti on fo r y o u th
af fec te d by H IV and
their c are give r
Thematic
anal y s is
The impact of HIV on families of
WLHIV
(i) Psycho l og i c a l im p acts on c h il dre n
• E m o t io na l r ea ct io n s: f ee li n g o r
lo o k ing s ad , hur t , upse t , c rie d
(i i) Soci al impact (st igma) o n chi ld r en
• T e as e d b y f r i e n d s ab ou t H I V
s t a tus of the m o the r
• L ab ell e d a s “l it tl e H I V e r ”
• H um iliate d by fr ien ds d ue to
moth e r ’s HIV s ta tus
8 . Conser v e ,
et a l ., 20 15
(19 )
H a it i
- Q u a l itat i v e d es i g n
- Metho ds :
• In-de pth inte r v iew
- Aim:
• To ex a min e
moth e rs’
e x pe rience s o f
impa c t of HIV
illnes s o n th e ir
c h ildre n’ s w ell-
be i ng a n d
de v e lo pmen t in
Ha it i.
- 25 H IV-posi ti ve m o thers
- Ma r it al st atus:
• N o t re porte d
- Pa r tic ipan ts’ ag e:
• N o t re porte d
- Pa r tic ipan t r ecrui tment
te chn ique:
• Par ticip a n ts we re a
p a rt o f a la rg e r
fe a s ibi li ty stu dy of a
psychosoci al support
inter ve nti on fo r y o u th
af fec te d by H IV and
their c are give r s
Thematic
anal y s is
The impact of HIV on WLHIV
( i ) P h y s i c a l i m pa c t
• Women’s poo r p hysic a l
s treng th l e ading to in abi lit y t o
ta k e o f c h il d r e n
(i i) E x ter na l s tig m a an d discr imina ti on
• From c o mm uni ty mem bers
( i ii ) E co n o m i c i m pa c t
• Loss of j ob
• In abil it y t o wor k due to p o or
physical s tr ength
The impact of HIV on families of
WLHIV
(i) Ec on om ic im p ac t
• Family hung e r a n d fo od
inse curity due to w om e n los t
their j ob s or we re un a b le t o
wo rk
• Burdenin g e xte n de d f am i ly
(mo th e rs) ec o n om ic a l ly t o fee d
and t ak e c a r e o f the women’s
c h ildre n
• Sel ling hou s e
(ii ) Impac t o n chi ld ren’s educ a ti o n
• Scho o l atte nd ance an d
pe rfor m ance we re af fec te d d ue
to
-
T a ki n g c a r e of s i c k mo t h e r
- L a c k o f fo od to eat b efo re
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goin g to sc h o ol o r g oing t o
s cho ol with o u t e a tin g a ny
fo od le a din g t o c h il dren
c o ming b a ck h o me e arl ier
-
P o o r eco n o m i c c o n d it io n
le a din g to in abi li ty t o sen d
c h ildre n t o s chool
- Mother’s HI V s t atus
a ff e ct s c h i l d r en ’ s f o c u s o n
s tu dying
(ii i) Exte rna l s tig m a an d discr i min ati on
aga inst childre n due t o th e ir mothers’
HI V s ta t u s
(i v) Fam il y sep ar ati on
• Le f t b y husb a nd du e t o HIV
sta t u s
(v) Psycholo g ic a l im p ac t o n chi ldr en
• Fee lin g s ad about mo th e r’s
p o o r h e a l t h c on d i t i on
9 . Cu c a, e t
al . , 20 12 (1 3)
Ke n ya
- Qua nti t ati ve de si g n:
• C ro s s-se ctional
st u d y
- Aim:
• To ex a min e f a ct ors
assoc i ate d wi th
an ticip atin g an d
ex p er i e n c i n g HI V -
re la ted s t ig m a
am o ng pre gnant
w om e n a t tend in g
an ten a t a l c a r e
c lin ics in rur a l
Ke n y a
- 41 1 w o me n:
• 1 54 WLH IV, 1 65 H IV-
nega tive w o me n , 90
wo m e n w i t h
unk nown HIV s tatus
- Ma r it al st atus:
• M o s t w er e m a r ri e d
a n d c u r re nt l y liv i n g
wi t h a ma l e p a rt n e r
(no c le ar inf orm ati on
m a r i tal sta t u s of th e
wo m e n )
- Pa r tic ipan ts’ ag e:
• R a n g ed b et we en 18
a n d 49 y e a rs o ld
• Mean age : 23 .6
- Pa r tic ipan t r ecrui tment
te chn ique:
• Par ticip a n ts we re par t
of a l a rge r
longitu dina l s tu dy
c o nducte d by the
Un i v ers i ty o f
Cali f o rni a , and the
Ke ny a M e dic a l
Re search Ins ti tute ,
w h o joint ly run th e
Fa m ily A IDS Care an d
Educ at i on Se r v ic es
progr a m in Ke n ya
- Only r esul ts abou t W LH IV
are inclu ded .
Bi v ar i a t e
logis t ic,
li ne a r
regre ssi on
anal y s is
an d
m u l t iva ria b
le m o de ls
The impact of HIV on WLHIV
(i) Exte rn al s tigma and disc r im in ati on
• Ve rb a l a buse
• He a lt h ca r e n eg l ec t
• Soc i a l is ola ti on
• Workp lace st ig m a
1 0. Dan e ,
20 02 (31 )
Tha i l and
- Q u a l itat i v e d es i g n
- Metho ds :
• Semi-struc tu r ed
inte r vie w
- Aim:
• To ex a min e th e
- 26 W LHIV
- Ma r it al st atus:
• A l l w i dowe d and one
re m ar rie d
- Pa r tic ipan ts’ ag e:
• R a n g ed b et we en 23
Conten t
anal y s is
The impact of HIV on WLHIV
(i) Psycho l og i c a l im p act
• Fee lin g is ola ted
(ii ) Ex t e rnal st ig m a an d d iscr iminat ion
• From f am i ly m e m b er s
- Women wer e n ot a l l owe d
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e x te n t of d i s closure
and i ts e ffec ts on
t h e wo m en i n t h r ee
are a s : chi ldr en,
f a mi l y a n d f ri e n d s .
a n d 47 y e a rs o ld
• Medi an ag e was 33 .1
yea rs
- Pa r tic ipan t r ecrui tment
te chn ique:
• Par ticip a n ts we re
re cruite d us ing
c o nven ient s a mplin g
te chn ique
t o c oo k fo r ot h e r or u se
othe rs ’ u tensils
-
Women wer e t o l d to hi de
H IV st at u s fr om othe r
pe o ple
The impact of HIV on families of
WLHIV
(i) Exte rn al s tigma and disc r im in ati on
aga inst childre n an d o ther ag ain s t othe r
family m e m ber s of W LHIV
1 1. d e
S ou za , 2 01 0
(32 )
In d i a
- Q u a l itat i v e d es i g n
- Metho ds :
• In-de pth Int er view
- Aim:
• To u nde rs t a nd
wo m en ’ s
ex p er i e n c e o f
powe r a nd
powe rles sness
- Two WLH IV
- Ma r it al st atus:
• Re m arri e d an d
wi d o we d
- Pa r tic ipan ts’ ag e:
• 31 a n d 3 3 y e a r s of a ge .
- Pa r tic ipan t r ecrui tment
te chn ique:
• Par ticip a n ts we re
re cruite d us ing
purpo s i v e s a mpl i ng
te chn ique
• Par ticip a n ts we re
re cruite d fr om or part
of a l a rge r s tu d y
iden tif yin g NGO
p r a ct i c es to mo bi liz e
c o mm unit ies f or
H IV/A IDS pr even ti on.
- T h e s e tw o wo m en we r e
c h ose n bec a use the y sh a r e
s i m i la r bi o gra p h y a nd i ll n e ss
narr at ives .
Conten t
anal y s is
The impact of HIV on WLHIV
(i) Exte rn al s tigma and disc r im in ati on
• From pa rents a nd siblings
• From pa rents-in-l a w
• From c o mm uni ty mem bers
12 . H all i, e t
a l ., 2 01 7 ( 7)
In d i a
- Qua nti t ati ve de si g n:
• C ro s s-se ctional
st u d y
- Aim
• To ex a min e
HI V / AI DS - r ela t ed
st i g ma a n d
disc rimina t i on i n a
high -H IV-
pre v a l ence dis tr ict
in Indi a
- 63 3 m a r rie d W LHIV
- Ma r it al st atus:
• Marr ied
- Pa r tic ipan ts’ ag e:
• R a n g ed b et we en 15
a n d 29 y e a rs o ld .
- Pa r tic ipan t r ecrui tment
te chn ique:
• Par ticip a n ts we re
ran do m ly se lecte d
from a un ique cr oss -
se cti onal q u anti t a ti v e
study con duc te d
among H IV-po s iti ve
w o men in B agal k o t
Dis trict o f Karn at aka ,
In di a .
Bi v ar i a t e
anal y s is
an d
mu lti v a r iat
e l o gis tic
regre ssi on
mo d e l s
The impact of HIV on WLHIV
i ) E x t er na st ig m a a n d di s cr i m i nat i o n
• From pa rents a nd siblings
• From husba n d a n d husb a nd ’s
family m e m ber s
• From c o mm uni ty mem bers
(fr i e n d s an d nei ghbours)
• Soc iode mogr a phic f a c t o rs
assoc i ate d wi th s tig m a an d
disc riminat ion fr o m h us band
and husb a nd’s f a mi l y mem b e rs
aga inst WL H IV:
-
O ccupa ti on an d age o f the
husba nd
- H ig he r age gap b e twe en
s p ouse s a nd p o o r
household s t a tus
- O ld e r age of th e husb a nd
and l owe r househo ld
e con om ic st atus
13 . Manop a i
b oo n , e t a l . , Tha i l and - Qua nti t ati ve de si g n:
• Prospe ct ive cohor t
- 12 9 p os tpartum WL H IV
- Ma r it al st atus:
Comp ar iso
ns w ere
The impact of HIV on WLHIV
(i) Psycho l og i c a l im p acts
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19 98 (20 )
st u d y
- Aim
• Imp a c t of HIV on
fam i l ie s o f H IV-
infe cte d women
wh o j u s t g av e b i rt h
• Marr ied
- Pa r tic ipan ts’ ag e:
• 3 3 % of the women
w ere l e ss th a n 20
yea rs of a ge
- Pa r tic ipan t r ecrui tment
te chn ique:
• Par ticip a n ts we re
re cruite d us ing
c o nven ient s a mplin g
te chn ique
• Par ticip a n ts we re par t
of a pr ospect i ve c oho r t
study of m o the r -to -
c h ild t r a nsmission
among 2 95 H IV-
infec te d p r egnant
wo m e n a n d t h e ir
new bo rn chi ldren
m ade using
2x 2 X
2 te s t
and X 2 wa s
us e d t o
com pa re
pair ed
re sults
• Depres sion an d worry : rel a ted
to chi ld r en’s h e a l th a nd
family’s fu tu r e a n d child re n
growing up with o ut their
moth e r
(ii ) Stigm a a nd d is cr imina ti o n
• Pe rceive d s tigm a
- Women b e li e ve d that H IV
w a s a d is e ase abou t w hi c h
their f amily woul d be
ash a med , le ading t o
c o nce alment of H IV s t a tus
fr o m other
• Exte rn al sti gm a f rom
c o mmu nity me m bers
- Women wer e ost r a c ised by
their neigh b ou r
- N eighb our refuse d to
s h are f ood
-
Frie n ds st opped v isi ting
- Exte rn al sti gm a f rom
family m e m ber s
- Sep ar ati on of wom e n’s
pe rsonal ite m s fr o m those
of othe r f amily m e m be rs
The impact on families of WLHIV
( i ) Fa m il y s ep a rati o n ( m o t h e r - ch i ld
se p a rat io n )
(ii ) Impac ts of ch i l dre n
• C h i l d r e n w er e r es p o n s i b il it ie s
for ho use h o l d ch o r es
• Children we re no t all o w ed t o
play wi th o the r c hildre n fr om
the ne ighbourhoo d
( i ii ) E co n o m i c i m pa c t
• Re du c ed f a mi ly inc om e
-
Du e to husbands b e in g
s i c k o r die d, s epar at i o n of
husba nds , u ne m pl oy men t,
job ins t a b ili ty
• Women d e cide d n ot t o app l y
for a job on c e they knew th a t a
c o mpa ny r eques te d H IV tes t
for a ppl icants
1 4. M a thew ,
et a l ., 20 19
(33 )
Tha i l and
- Q u a l itat i v e d es i g n
- Metho ds :
• Semi-struc tu r ed
qua l it a t iv e
inte r vie w
- Aim
• To exp l ore the
pe rspec ti v e s o f
youn g adul ts living
wi t h HI V i n
Ban g kok re gard in g
the influence o f
- 14 fem a le s a n d 9 males .
- M a ri ta l s ta t u s :
• Sin g le
- Pa r tic ipan ts’ ag e:
• 1 5 -2 4 ye ars old
- Pa r tic ipan t r ecrui tment
te chn ique:
• Par ticip a n ts we re
re cruite d us ing
c o nven ient a nd
purpo s i v e s a mpl i ng
te chn iques
Thematic
anal y s is
The impact of HIV on WLHIV
(i) Perc ei ved st igma
• The be lie f th a t oth e r pe op le
w ill disl ike a nd sh o w n e ga ti v e
re a c ti o ns if o ne ’ s H IV st atus is
kno w n
• The be lie f th a t on e wil l be
ex cl u d ed o r d e n i ed f ro m a
c ert ain j o b bec ause of one’s
HI V s ta tu s
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st i g ma a n d
disc rimina t i on i n
e ducati on,
em p l o y m en t , h ea l t h
c a re , pe rs onal
r el a t i onship s , and
pe rce p ti ons o f se lf
- Only the r esul ts about the
i m p a ct o f H I V o n t h e f e mal e
par tic ip a nts ar e in c lu de d .
1 5. Nguy e n,
et a l ., 20 09
(34 )
Vietn a m
- Q u a l itat i v e d es i g n
- Metho ds :
• In-de pth inte r v iew
- Aim:
• To exp l ore the
e x pe rience of 30
WLH IVin V i e tnam
in a c ces sing H I V-
re la ted po st na tal
c a re , the ro le of fe lt
and e nacte d s tigma
in a c ces sing
s ervice s , and the
e ffec ts of
par tic ip a t ion in a
s elf-help g r o up o n
u t i liz at io n o f
a v a i l a bl e se r vices .
- 30 mar rie d W LHI V
- Ma r it al st atus:
• Marr ied
- Pa r tic ipan ts’ ag e:
• R a n g ed b et we en 25
a n d 35 y e a rs .
- Pa r tic ipan t r ecrui tment
te chn ique:
• Par ticip a n ts we re
re cruite d us ing
c o nven ient s a mplin g
te chn ique
• Par ticip a n ts we re
re cruite d thr ou gh
heal thc a r e f a c ili tie s
and re ferr a l o f
heal thc a r e
profes si o n als
Thematic
anal y s is
The impact of HIV on WLHIV
(i) Exte rn al s tigma and disc r im in ati on
• From husba n d’s f a mil y
(mo th e r a n d sis ter )
• From c o mm uni ty mem bers
• From hea l th c ar e pr o fe ss ion als
The impact of HIV on families of
WLHIV
(i) Exte rn al s tigma and disc r im in ati on
• From husba n d’s f a mil y
(mo th e r a n d sis ter )
-
Bowls and ch opsticks we re
bo i le d b y s is ter- in-l a w
(ii ) Economic i mp a c t
• Loss of j ob/f ami l y b us i ne ss
1 6. Paxton ,
et a l ., 20 05
(8)
In di a ,
In don e si a,
Thail a n d,
the
Ph ilippin e s
- Qua nti t ati ve de si g n:
• C ro s s-se ctional
st u d y
- Aim:
• To de vel op an
unders t a nd in g of
the n a tu r e, pa tte rn
and e xte n t of A IDS-
re la ted
disc rimina t i on i n
se v e ra l A s ia n
co u n t ri e s
- 76 4 P LHIV in f o ur c ountr ies
( Indi a 30 2 ; Ind o nes ia 42;
Thail and 33 8; the Ph i lipp i ne s
82 )
- 34 8 re sponde n ts w er e fem a le :
• 40 % m ar r i ed
• 50 % w i d o we d
• 10 % s i n g l e
- 39 4 w ere m a le, six we re
tr ansgende r an d f o r f ive se x
w a s no t r eco rded
- Pa r tic ipan ts’ ag e:
• N o t re porte d
- Pa r tic ipan t r ecrui tment
te chn ique:
• Par ticip a n ts we re
re cruite d us ing
snowba l l s ampling
te chn ique.
- Only r esul ts abou t W LH IV
we r e u se d .
Chi squa re
te st
The impact of HIV on WLHIV
(i) Exte rn al s tigma and disc r im in ati on
• From hea l th c ar e pr o fe ss ion als
- Re fusa l o f tr e atme n t or a
de lay in the p r o v isi on of
heal thc a r e
- Be i ng coerc e d i nt o a n HIV
te st
-
U n de rgoing m a nd ato ry
te st ing w h ile they we re
pre g nant or b e c au s e of the
illness of a chil d
-
Be i ng a d vise d n o t to h ave
c h ildre n af ter d i a gno s is
w ith ou t gi vin g
info rmat io n a b out
pre v e n tion o f mother -t o -
c h ild t r a nsmission .
- Be i ng coerc e d i nt o a n
abor ti on o r s te ri l i z ati on
a ft e r dia g no si s
-
Losin g or b e in g den ied
priv ate i nsur ance once
their H IV st atus w a s
kno w n and disc r im in ate d
in re l at io n to pri v ate
insuran c e
• From c o mm uni ty mem bers
- Be i ng refuse d e nt ry t o,
aske d to le a ve or r emoved
fr o m a pu b lic
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e st ab l ishment ( i nc luding
places o f re li gi o us
wo rs h i p )
-
Chan ging the ir p l a c e o f
re sidence d ue t o their H IV
sta t u s
-
Be i ng exclude d fr o m s oci a l
functi on s due to th e ir
sta t u s
-
Be i ng p hysic al ly ass au l te d
bec a use o f their st a tu s
-
Be i ng require d t o disc lose
their H IV st atus in o rd e r t o
e n te r a n o th e r c oun t r y
-
Be i ng exclude d fr o m usu a l
ac ti vi ti e s
-
Be i ng exclude d fr o m
assoc i at io ns o r clu b s due
to th e ir st atus and/or
re str ic te d in their a b ili ty to
mee t wi th othe r PLH IV
• From f am i ly m e m b er s
- Be i ng exclude d fr o m usu a l
household ac ti vit ie s such
as c o o king, sh a r i ng foo d or
e ating imp l e ments a n d
s l e eping in th e s a me r oom
as othe rs.
-
Losin g f in a nci al s u ppor t
fr o m th e ir spo use or o th e r
family m e m ber s du e t o
HI V s ta tu s
-
B ei n g c h a sed h er o u t o f
her home b y m o ther in-
law due H IV s t atus
• At wor k p la c e
-
Loss of j obs
- Chan ge in job de scr ipt ion
or dut i e s
-
Loss p rospec ts f o r
promot ion
The impact of HIV on families of
WLHIV
(i) Impact o f c h i ld re n ’s e du c ati on
• c h ildre n w ere de nie d
admiss i o n int o scho ols
(ii ) Fam il y se par ati on
• Children invo lun t a ril y t ak e n
a w ay fr o m t h em d u e to t h ei r
HI V s ta tu s
• Dese rtion / a bandonm e nt by
their s p ouse bec a use of the ir
di ag n osis
1 7. Qin , China - Qua nti t ati ve de si g n: - 19 4 p re g n an t WLH IV Mu ltip le The impact of HIV on WLHIV
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20 18 (11 )
• C ro s s-se ctional
st u d y
- Aim
• To exp l ore the
psychol o gic al
dist r ess of H IV-
infe cte d pr egn a nt
wo m en , a n d
an a l yse the p ossib l e
influencing f ac to rs
- Ma r it al st atus:
• Marr ied
- Pa r tic ipan ts’ ag e:
• T h e a v era g e a g e o f t h e
par tic ip a nts w as 25 . 1 ±
5 .8 y e ar s
- Pa r tic ipan t r ecrui tment
te chn ique:
• Par ticip a n ts we re
re cruite d us ing
c o nven ient s a mplin g
te chn ique
li ne a r
regre ssi on
anal y s is
(i) Psycho l og i c a l im p act
• A n xiet y a nd de press i o n
• Fac tor s a ss o c iate d w ith
psychol o gic al d ist re ss
-
Family misf or tun e ,
M ed i c a i d, ch r o n i c di s ea s e
or h ig h-risk pr egnancy,
vir a l l o a d , CD4 þ T ce ll
co u n t , i nf e cti o n a n d
co n f id e n tia li ty
1 8. Ru f fe ll ,
20 17 (12 ) Ugand a
- Q u a l itat i v e d es i g n
- Metho ds :
• In-de pth inte r v iew
- One WLH IV
- Ma r it al st atus:
• Re m arri e d
- Pa r tic ipan t’ s ag e:
• 58 y ea r s o ld
- Pa r tic ipan t r ecrui tment
te chn ique:
• N o t me th od
- The narr a ti v e of this woman
w a s c h ose n in th is case s tudy a s
i t il l u stra t es t h e n eg at iv e
impa c t th at s tigma a nd
disc riminat ion c a n ha ve o n
ment al and c onsequent ly
phy s ical he al th, bo th a cu te ly
and chr onic a l ly.
Conten t
anal y s is
The impact of HIV on WLHIV
(i) Exte rn al s tigma and disc r im in ati on
• From pa rents-in-l a w : be ing
c h ase d away fr om h om e
• From fr ie n ds : W om an’
posse ssions we re bu r nt b y
fr i e nd s
(ii ) Perc e ive d s tig m a
• The be lie f th a t oth e r pe op le are
t alking or singing abo u t he r
(ii ) Psychol og ic a l im p ac ts
• Ext reme p a r a n oia , le ss sle ep ,
p a n i c a tta ck , dr ea m s o f
drowning, and depre ssi on
19 . Subr am a
niy a n, e t al .,
20 13 (35 )
In d i a
- Q u a l itat i v e d es i g n
- Metho ds :
• In-de pth inte r v iew
- Aim:
• To exp l ore the
dif ficul ties f ace d by
ru ra l HI V po s it iv e
moth e rs dur ing the
intr a-nat al per i od .
- 21 W LHIV who we re m other s
- Ma r it al st atus:
• N o t re porte d
- Pa r tic ipan ts’ ag e:
• R a n g ed b et we en 20
a n d 39 y e a rs .
- Pa r tic ipan t r ecrui tment
te chn ique:
• N o t re porte d
Conten t
anal y s is
The impact of HIV on WLHIV
(i) Exte rn al s tigma and disc r im in ati on
• From hea l th c ar e pr o fe ss ion als
- A void a nce o f ph ys ic al
ex a m i n ati o n, ru d e
beha viour like thr owing of
re cor ds on the f ace ,
disc riminat ory com men ts,
unnece ssary re fe rr als an d
ev en re f u sa l to p ro vi d e
intr a-par tum s er vice s
- L e ad i n g t o w om e n
c o nce aling the ir H IV
s t at u s , no t ac c e s s i ng
h e a lt h ca re s erv i ce s o r
lo o k ing f or he a l thc are
s ervice s i n o th e r pl ace s
wh er e t h ei r HI V s tat u s i s
unkn own t o he a lthc a r e
pro vide rs
20 . Wi the ll ,
20 00 (37 ) Ugand a
- Q u a l itat i v e d es i g n
- Metho ds :
• Semi-struc tu r ed
inte r vie w
- Aim:
• To exp l ore w hat
assis ted th e m t o
c o pe and i dent ify
the ir fu ture
- Seven WLH IV
- M a ri ta l s ta t u s :
• 4 wi d o we d
• 2marr ie d
• 1 s epar a te d
- Pa r tic ipan ts’ ag e:
• R a n g ed b et we en 26
and 4 3 y e a r s
- Pa r tic ipan t r ecrui tment
Thematic
anal y s is
The impact of HIV on WLHIV
(i) Psycho l og i c a l im p act
• Worry a nd fe ar of the h e a l th
and fu ture of the c hildr e n
(ii ) Ex t e rnal st ig m a an d d iscr iminat ion
• From f am i ly, re l a t i ves and
fr i e nd s
-
Soc i a l is ola ti on and
re ject ion
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c o nce rns te chn ique:
• Par ticip a n ts we re
re cruite d us ing
c o nven ient s a mplin g
te chn ique
( i ii ) P h y s i ca l i m pa ct
• Pain an d suffer i ng
(i v) Ec o n om ic imp a ct
• Loss of j ob
The impact of HIV on families of
WLHIV
(i) Ec on om ic im p ac t
• I n c rea s ed fa mi l y h ea lt h - re la t ed
e x pe n di ture
2 1. Y a ng,
20 15 (9 )
Ca m b od ia
- Q u a l itat i v e d es i g n
- Metho ds :
• In-de pth inte r v iew
- Aim
• To exp l ore
wo m en ’ s
pe rspec ti v e s o n
the ir l ife c h ange s
af ter be ing infe c ted
w ith H IV b y their
husba nds .
- 15 W LHIV
- Ma r it al st atus:
• Marr ied
- Pa r tic ipan ts’ ag e:
• R a n g ed b et we en 30
and 4 2 y e a r s
- Pa r tic ipan t r ecrui tment
te chn ique:
• Par ticip a n ts we re
re cruite d us ing
snowba l l s ampling
te chn ique
(i) th e ma tic
an a l y s i s ,
( i i) a na ly s i s
of
ep i so d es,
an d
(ii i)
i d en t i fi ca ti
on of
pa r a dig m
case s
The impact of HIV on WLHIV
(i) Int imate p a r tne r v i olence
(ii ) P o o r ph ysic al s tre n g th
• In abil it y t o wor k
The impact of HIV on families of
WLHIV
( i ) Fa m il y s ep a rati o n
• Children li v e with o ther
famil ie s f o r be t te r housing an d
due to m o ther’s sicknes s
(ii ) Economic i mp a c t
• Fo o d in s ec u r ity , h unger a nd
pove rt y
• I n c rea s ed fa mi l y h ea lt h
e x pe n di ture
• Sel ling o f f amily pr o pe r ti es
2 2. Y ator , e t
al . , 20 16 (3 8) Ke n ya
- Qua nti t ati ve de si g n:
• C ro s s-se ctional
st u d y
- Aim
• To de ter m ine the
pre v a l ence a nd
s everi ty of
postp a r tu m
de press i o n a m o ng
WLH IV a n d to
f u r t h er u n d e rsta n d
the impa c t of
st i g ma a n d
psychosoci al f ac t ors
in 12 3 W LHIV
a tten ding
pre ven ti o n o f
moth e r- to-chil d
tr a nsmissi on c linic
in Na ir obi, Kenya.
- 12 3 p os tpartum WL H IV
- Ma r it al st atus:
• 84 m a r ri e d
• 2 9 singl e
• 2 d ivo r c ed
• 7 s epar a te d
• 2 co - h ab it i n g
- Pa r tic ipan ts’ ag e:
• R a n g ed b et we en 19
and 4 8
• Mean age : 31 ye ars
- Pa r tic ipan t r ecrui tment
te chn ique:
• N o t re porte d
Bi v ar i a t e
an a l y s e s
using chi-
squ are /Fish
e r’s ex a c t
an d
Ke n da ll’ s
ta u - b t e s t s ,
an d
mu lti v a r iat
e
regre ssi on
mod e l
The impact of HIV on WLHIV
(i) Psycho l og i c a l im p act
• Depres sion
• Soc iode mogr a phic f a c t o rs
assoc i ate d wi th d e pres si o n
among W LH IV
-
Lowe r le vel of e d uc ati on
- L a c k o f fa m il y s u p po r t
- N ega t i ve se l f-perce i v e d
st i g ma
( i i) E x ter n a l s ti g ma a nd i nt e r nal i sed
st i g ma
3.2 . Im pa c t of HIV on WL HIV an d their fam ilies
Two t he m ati c cate g or ies in cl u ding i ndividu a l le v el and f a m ily le v el i m p ac t ( F igur e 2) wer e
identifie d . Dir ect q u ote s fro m p a rti c ip a nts were a ls o sel e ct e d fr om t he stud ies to s uppor t the
d e s c r i p t i v e s yn t he s i s o f e a c h t he m e a s s u m m a r i s e d i n T a b l e 2 . F r o m e a c h o f t h e t wo c a t e g o r i e s ab o v e ,
a f urt her synthesis (e x pl an a t or y p h a s e) w a s und ert aken w her e differ ent HIV -related i m p a cts were
m a p p e d i nto a c om pr e hensiv e Co n cept u al Mod e l of co m p le x i m p a c t ( F ig ur e 2 ) e ndur ed by WL HIV
a nd t he ir f a m ilie s . T he s e we r e s ubc a tegoris e d int o fiv e t he m ati c ar eas (Figur e 2 ) in cl udi ng: (i)
psy ch ol ogi c al i m p a c t o n W L HIV and t heir f a mili es, (ii ) p hysi c a l h ealth i m p a ct on W L HI V and
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inti m at e p art ner violen c e ag ains t the m , (i ii) neg ative so ci a l i m p a ct o n WL HIV a n d their f a m ilies, and
(iv) e co no m i c im p a ct o n W LH IV a n d the ir f am ilies. These the m e s are dis cu ssed in tur n b e lo w. T h e
m e ch a nis ms t hro ug h w hic h th e s e in flue n ce t he live s of WLH IV a nd t hei r f am ilies, and
interrel ations hips be t we e n t he m ar e also de s c r ibed.
Fi g u re 2 . Co n c e pt u al M ode l f or H IV i m p a cts on i ndi vidu als an d f am ilies.
3.2 . 1. Ps ychologic a l i m p a ct o f HIV o n WL HIV a nd t h ei r f am ilies
Th irtee n studies r eport ed v a rio us ps y c hologi ca l challenges f ac e d by W L HI V a n d th ei r f a mili e s ,
e s p e c i a l l y c hi l d r e n ( 5 , 6 , 1 1 , 1 2 , 1 6 , 1 9 , 2 0 , 2 5 , 3 0 , 3 1 , 3 6 - 3 8 ) . P s y c ho l o g i c a l c h a l l e n g e s s u c h a s
depr ession, wor ries, anxiety, s ad ne s s a nd e m b arr ass m ent w ere the m ost c om m o n e x p erie n c es a m o n g
WLH IV ( 12, 16 ). T he s e ps yc hol og i c al c h a l lenge s were often tr ig ger ed b y a r a ng e of co n c er ns o r f ac t ors
the wo m en f e lt or f a ced f ollo wing an HI V di ag nosis. M oreov er, c hildre n o f W LHIV we re
psy chol ogi c ally i m p ac ted m a ni festing i n a r an ge of em o tio n al r e s pons e s incl uding s ad ne s s a n d
worri es abo ut th eir m ot he r HIV s ta t us a nd po or he alt h co nditio n ( 1 9 , 25 ). Ad v a nc ed stag e of HIV
infe ctio n, f e a r o f br e ac h o f con fide nti al it y a b o ut HIV st atus and fe e ling like a sh a m e t o f a mily wer e
a l s o n o t e d a s f a c t o r s a s s o c i a t e d w i t h t he p s y c ho l o g i c a l i m p a c t o n W L H I V ( 1 1 , 1 6 , 3 0 ) . F e a r o f
tra ns mitt i ng HIV in fec tio n to u nb o r n b abies (6 ), co n ce r ns a bout the fut u re of ch i ldren u p on W LH IV
u n t i m e l y d e a t h ( 5 , 6 , 2 0 , 3 7 ) , a n d t he l a c k o f r e s o u r c e s t o t a k e c a r e o f t h e i r c hi l d r e n ( 6 , 3 0 ) p u t
additi on a l psy chol ogi cal s tress to W LHI V. Th e l a c k of so ci a l su p port, so c i al r eje c tio n or isol atio n,
p e r c e i v ed s t i g m a ( 1 6 , 3 1 , 3 6 , 3 8 ) a n d p o o r e c o n o m i c c o n d i t i o n s d u e t o r e d u c t i on i n w o r k a nd i n c r e as e
in f a m i ly he a lt h c a r e ex penses ( 6, 30 ) c aus e d de pression a nd i n c re ased fe a r a m ong WLH IV . Additi on a l
f a c t o r s s u c h a s l o w e r e d u c a t i o n a t t a i n m e n t , l a c k o f f a m i l y s u p p o r t ( 3 0 , 3 8 ) , b e i n g p r i m a r y c a r e t a k e r
for childre n, ce s sati o n o f the rel ati ons hi ps with a p a r tn e r an d / o r p a rtn er’s deat h ( 3 0 ), p oor he alt h,
single m a r it a l s ta tus , u n int end ed pregn a n c ies ( 3 6 ), p re d ict ed poo r ps y c holo gic al f un ctio ning of
WLH IV.
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3.2 . 2. Phys ic al he alt h im p a c t of HIV o n W LHIV a nd i nti m a te p artn er viol e n ce ( IPV ) ag a inst th em
Three studi es rep orted re du ced p hysic a l s tre ng t h ( 9, 1 9), di ff ic ult sleeping, diz ziness and
ex ha ustio n ( 3 7) a fter HIV di ag n o s is a m o n g W LHIV . T h ese physic a l iss ue s we r e re port ed t o j eop ardis e
the d ay to d a y f un cti oning o f WL HIV , w hi ch a ff e c te d the w ay t h ey lo o ked af te r their c h ildren a nd the
abil it y t o w ork and pr ovid e f o r t he ir c hil dren ( 9, 19 ).
Two studies re port ed tha t a di a g n osis o f HIV in w o m en r e s ults in IPV a nd m a ltr ea t ment to w ards
t he m ( 5 , 9 ) . H u s b a n d s ’ r a g e t o w a r d s w i v e s ’ H I V d i a g n o s i s , w o m e n ’ s t o l e r a n c e o f h u s b a n d s ’
be h a vi ours a nd wom e n ’s co m m it m ent to living to ge t her f o r the s ake of c hildren we r e r epor t e d to
heighte n IPV a g a i ns t WLH IV ( 5, 9).
3.2 . 3. S o c i al i m p ac t of HI V on W L HI V an d their f a m ilie s
3.2 . 3.1. Stigm a a nd dis c r i m in atio n a g ai nst W LHIV
N i n e s t u d i es r e p or t ed w o m e n ’ s f e e l i n g s o f an t i c i p a t e d s t i g m a f o l l o wi n g t he i r H I V d i a gn o s i s , a n d
they belie v ed th at peopl e, in c l uding f a m ily me m b e r s, wo uld rea c t neg ative ly t o their HIV s tat us ( 1 6,
3 3, 40) . F or exa m p le, t hey hold t he belief th at o t her p eople will discl o s e their s tatus and f a m ily
m e m bers will reject them a fter fi nding o u t ab out the HIV di ag nosis (1 2 , 1 6, 2 0, 3 1, 3 3 ). S u c h b elie f was
based on HI V-rel ate d dis cri mi n at ory a nd stig m atising a ttitud es a nd be havio ur s previo us ly
ex p erie n c ed by oth er PL HI V, a nd h a ve oft e n led to w o m en isol ating t hem s e lv es to hide the H IV
d i a gn o si s f ro m f a mi l y memb e r s (12 , 20 , 31) . A low er per c eptio n o f so ci a l s upp or t fr om o t her p eo ple
with i n the ir co m m u nitie s ( 3 6) a nd the f ear o f c h ildren b ei ng stig m atised ( 6) were also expr e s sed a s a
for m o f a nti cip a t ed s tigm a, le a di ng t o W LH IV a voidi ng p ar ti c ip ati o n in co m m un al a ctivities. Bei ng
olde r wo m e n , ha vi ng li mit ed ed uc ati o n a nd havi ng a h us b and with m u ltipl e wi ve s ( 13 ) wer e
a d d i t io na l fac to r s a ss oc i a t e d w i th a n t ic ipa te d s t i gma .
N i n e s t u d i es s ho w ed t h a t W L H I V ex p er i en c ed H I V - s t i g m a a n d d i s cr i m i n a t i o n f r o m cl o s e f a m i l y
m e m bers su ch as h us bands a n d i n- l a ws, p are nts and s ibling s . WLHIV e xp erie nc ed bl ami ng, verb a l
i n s u l t s , a v o i d a n c e a n d r e j e c t i o n f r o m hu s b a n d a n d i n - l a w s ( 7 , 1 6 , 3 2 ) . WL H IV al so w ere ac cu sed b y
p a r e n t s - i n - l a w o f t r a n s m i t t i n g H I V t o t h e i r hu s b a n d s a n d w e r e e x p e l l e d f r o m t he i r m a r i t a l ho m e s ( 8 ,
1 2, 3 2, 3 4) . H usb a nds ’ o cc u p ati o n, a wider a ge g a p bet wee n WLH IV a nd their h us b ands , and the
wo m en ’s lower house h old e co no m i c s t atu s, fin a n c i al d epe nde n c y o n their hus ba nd a nd i n ab ility t o
e n g a g e i n i n c o m e g e n e r a t i n g a c t i v i t i e s w e r e c o n t r i b u t i n g f a c t o r s a s s o c i a t e d w i t h s u c h d i s c r i m i n a t o r y
a nd s tigm a tising a t titud e s an d b ehavi o urs ( 7 ). W o m en ’s in ability to e ngag e in in c o m e g e ner ati ng
a c ti vities a nd t he f ina n ci al depe nden c y on th eir hus b ands ap pea red to be an e xpla n atio n f or su ch
negati ve attitudes and be h avi ou rs of husba nds a nd in-l a ws t o w ards the m ( 2 0 , 3 4 ). W L HI V a ls o
ex p erie n c ed stig m a a nd dis cri mi n a ti on f r om the ir ow n f a m ilie s in c l uding fr o m p ar ents a nd s ib lings .
They w ere a s ke d to lea ve ho m e ( 3 2, 3 7), exclud ed fr o m usu al f am ily a ctivities in clu din g c oo ki ng, and
their p ers on a l item s (e. g. , c lot hes a n d eati ng ute nsils ) were s e p a r ated fr om th o se of o t her f a mily
memb e r s ( 7 , 8 , 16, 20 , 31) .
Twel v e stu die s rep o r t e d H IV -stigm a a nd disc r i m in a ti on a g a i ns t WLH IV b y f ri ends , ne ig hb ou rs
a n d o t he r c o m m u n i t y m e m b e r s ( 5 , 7 , 8 , 1 2 , 1 3 , 1 9 , 2 0 , 3 1 , 3 2 , 3 4 , 3 5 , 3 7 ) . S o c i a l i s o l a t i o n ( e . g . , r e f u s e d
entry/ e x cl ude d fr o m s oci al fu n c ti o ns or r em o ve d fr o m p ubli c e s ta b lis hm e nts ) ( 8 , 1 3 , 37 ), r ef us a l of
neigh b ours a nd rel a t ives to shar e f o od a nd dri nks ( 20, 3 1 ), havi ng p ers on al p o ss e ssions burn e d by
f r i e n d s a n d r e l a t i v e s , a n d e v i c t i o n f r o m r e n t a l p r o p e r t i e s ( 1 2 ) d u e t o t he f e a r o f c o n t r a c t i n g H I V
t hr o u g h s o c i a l c o n t a c t s , w e r e s o m e d i s c r i m i n a t i o n i n c i d e n t s t h a t W L H I V f a c e d w i t hi n c o m m u n i t i e s .
WLH IV also ex pe r ien c e d physi cal ass au l t s, neg a ti ve l abe llin g u sing disc ri mi n a tory wor ds su ch as
“H IV c ar ri e rs” o r “ s he i s ( HI V) po si t i v e” , an d ha ra s sme n t s b y o th e r commun i t y m emb e r s (8 , 32 , 34 ).
S i m i l a r l y , w i t hi n he a l t h c a r e s e t t i n g s , W L H I V e x p e r i e n c e d a r a n g e o f d i s c r i m i n a t o r y t r e a t m e n t s
o r b e ha v i o u r s b y he a l t hc a r e p r o f e s s i o n a l s d u e t o l i m i t e d k n o w l e d g e a b o u t H I V a n d f e a r o f
co ntr acti ng HI V ( 5, 8, 1 3, 1 6, 3 4, 3 5 ). Hea lth pr o fess io n als e xe r te d th e HIV-s tig m a a nd dis cri m in ati on
tow ar ds WLHIV i n a f or m o f c r i t icising, blam i ng, sho uting a t, thr o wing healt h re cords in their f a ce ( 5,
3 4, 35 ), av oiding p hy s i cal c o nt act with the m ( 3 4 , 3 5 ), r e f us ing t o pr o vide he a lt h c a r e servi c e s o r
leavi ng the m u ntre a t ed ( 5, 8 , 13, 1 6, 3 4, 35 ), a nd un nec e s sary r ef err als ( 16, 3 5). C oe r ci o n to und e r g o
HIV t esting, te r mi n ati on o f pr egn a n cy , sterilis a tio n, a nd te r m ina tio n or l oss of priv at e he a lt h
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insur a n c e , a fte r H IV diag n osis, we r e o the r ins t anc es o f he al t h c ar e-related discri m i n a tio n a g ai nst
WLH IV ( 8). As a co nseq uen c e , WL HIV chose n ot to dis c l ose th ei r HI V stat us and wo uld go u ntre at e d
( 3 4 , 3 5) , o ften leadi ng t o adv an c ed s t ag e of HI V i nf ecti on.
Stig m a and dis c ri m in ati o n tow ar ds WLHIV also o cc ur red wit hin th e wor kpl a ce s e ttings ,
m a n if e s ting in the l o s s of pr ospe cts f or pr o m oti on a nd u ne x pl ai ne d c h ang es in jo b descri ptio ns due to
e m ployers w orr y i ng tha t cus tom ers m a y av oid using t h e ser vi c es pro vided by WL HIV ( 8 , 3 7).
3 . 2.3 . 2 . S t i g ma an d d i sc rimi na t i on a ga in s t HI V-a ffe c te d fami l y membe rs
Five st udi e s r eport ed t h a t husb a nds a nd c hildre n o f WLH IV, w ho w e r e H I V-neg ative, a ls o
e x p e r i e n c e d s t i g m a a n d d i s c r i m i n a t i o n f r o m r e l a t i v e s a n d o t he r c o m m u n i t y m e m b e r s ( 6 , 1 9 , 2 5 , 3 1 ,
3 4). F or ex am p le, husb a nds’ rel ati ve s sterilised (by boiling) utens ils (e.g. , bo wls a nd cho ps tic ks) t h a t
h a d b e e n u s e d b y t he w o m e n ’ s h u s b a n d a n d c hi l d r e n b e f o r e t he y c o u l d u s e t he s e t he m s e l v e s d u e t o
t he f e a r o f c o n t r a c t i n g H I V , s t e m m i n g f r o m a l a c k o f H I V k n o w l e d g e ( 3 4 ) . C hi l d r e n o f W L H I V w e r e
also ne g a tive ly a f fect ed by t heir m o t he r ’s HI V-p ositive st atus.
3.2 . 3.3. I m p a cts o f m ot hers’ H IV s ta tus on c hildre n ’s so c i al lif e a nd edu c ati on
Seve n st udie s indi ca ted t ha t ch ildre n o f W LHI V experi en ced s oci al a n d e d u c a ti o n al challe ng es
(8 , 19 , 20, 2 5 , 31, 3 9 , 41 ). Chi l d r en of WLH I V o f t en fac e d s ti gma an d d i s c r iminat i o n , s uch a s b e in g
rejected, te ased o r m oc ke d by thei r fr iends and sig nifi ca nt oth er s due t o their m ot h ers bei ng
d i a g n o s e d w i t h H I V i n f e c t i o n . F o r e x a m p l e , t he y w e r e t o l d “ y o u r m o t he r h a s H I V ” , c a l l e d “ l i t t l e
H I V e r ” b y f r i e n d s ( 1 9 , 2 5 ) a n d p l a c e d a t a s e p a r a t e d e s k b y t e a c h e r s , w hi l e o t he r c hi l d r e n w e r e t o l d
not to pl a y with th em at s c h o ol a nd withi n co m m u nity wher e the y lived ( 31, 41 ). Two studies
rep orted t h at b e c aus e of t heir m ot her ’s r e gul ar illn e s s, c hi ldr e n of W L HI V h a d addition al ho useh o ld
respo nsibilities includi n g u ndert aki ng ho usehold chor es a nd t a kin g ca re o f the ir s ic k m o th e r s (2 0, 3 9) .
These a d dition al r e s po ns ib ilities prev e nted c hildr en f r o m acti vities s uch as soc i a lising with fr iends ,
be ing i nv olv e d in e x t r ac urr i c ul ar s c ho ol or p e er a c ti vities a nd doi ng s ch ool hom e wor k ( 20 ). M oth ers’
po or h e alth c ondit i o n due to HIV in fe ction a ls o in flue n ced childr en’s edu cati o n t h r ough miss ing
scho o l a nd p o or a v ail a b ility of essenti al pro visions s u c h as f ood and s chool f e es, le a ding to ch ildr en’s
po or ed u cati on a l p e r f o r m an c e a nd/o r ou tc o m e s ( 1 9). I n one s tudy, c hildren of W LHIV w e r e de nied
s c hoo l a dmi ss i o n or e x pe l l e d from sc hoo l du e to p r e s s ur e or co mp la in t s fr om th e pa re n t s o f o th e r
stud e nts , w ho f eared H IV tr ans m is sion t o their c h i ldr en ( 8 ).
3.2 . 3.4. F am ily sep ar a tion a nd child-p are nt con fli c t s
For c e d re m ov al of childr e n by i n-la ws due to a m ot her ’s HIV dia gn o s is was a not he r so ci a l
i mp a ct o f HI V o n H IV -aff ecte d f am ilies (8 , 2 0, 3 4). WL HIV also rep o r te d vo l un tarily s e ndi ng t he ir
childr en to liv e with t he ir siblings or si s ters-in-law/ brot hers-in-l aw ’s f a m ily, onc e th e y w ere
ter mi n all y ill or h os pit a lis e d ( 9 ). T he m ai n re as on f or s u ch se p ar ati on s w a s due to the fe ar of i n - l a ws
ab out m othe r -to- c h ild tr a ns miss ion a nd th e m others’ in a b ility to rais e the ir c h ildr e n due t o p oor
p h y s i c a l he a l t h a n d e c o n o m i c c o n d i t i o n s ( 9 , 1 9 ) . H u s b a n d - w i f e s e p a r a t i o n o r a b a n d o n m e n t b y a
husb a nd or p art ne r was an ot he r ne g ati ve i mp a ct o f HIV o n th e f am ilies o f WL HIV ( 8, 1 9 , 3 7), m a ki ng
i t ha r d f o r w o m e n t o t a k e c a r e o f t he m s e l v e s a n d t he i r c h i l d r e n ( 3 7 ) . A d i a g n o s i s o f H I V i n m o t he r s
also br oug ht co nfli cts to p a rent -child r elati o ns hi ps ( 3 9 ), and in so m e i nsta n ces, c hildren bl a m ed th e ir
f ath e r s as the so ur c e o f t heir m oth ers ’ HIV i nfec tio n ( 2 5 ) . This all wo uld likel y to b e w orse if th e
childr en we r e H IV -infec te d t he m selv e s ( 39 ).
3.2 . 4. E c o n omi c i m p ac t of HIV on WL HI V and t heir f a m ili es
S i x s t u d i e s r e p o r t e d t ha t H I V i n f e c t i o n ha d n e g a t i v e e c o n o m i c i m p a c t o n W L H I V a t i n d i v i d u a l
a nd f a m il y levels, t hro ug h s e v er al m ec h anis ms. F or exa m p le, a lo s s o f job or p o tenti al wo r k du e t o
w o m e n ’ s H I V s t a t u s ( 8 , 3 7 ) a n d p o o r p hy s i c a l s t r e n g t h ( 9 , 3 7 ) w e r e r e p o r t e d t o p r e v e n t t he m f r o m
wo rk i n g , a ff ec t i n g t he i r ec onomic s i tua t i on . H IV d ia g no s i s n e gat i v e l y i nf l u e nce d wome n’ s
willing n ess to ap ply for jo b s tha t r eq uir ed HIV t esting ( 2 0 ) and l ed to w o m en l os i ng fi n a n c i al su pp ort
f r om the i r s pou s e a n d o the r fami l y mem b e rs (8 ).
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HIV i m p a ct at a f a m ily l evel in c lud e d the redu ctio n in f am ily in co m e due l oss of job or
u n e m p l o y m e n t a n d w o m e n ’ s i n a b i l i t y t o w o r k ( 2 0 ) , a n d i n s o m e c a s e s c l i e n t s o r c u s t o m e r s s t o p p e d
using the f a m ily busin ess services after le a rni ng ab o ut t he HIV st a t us of wo m e n in t he f a m ily ( 3 4 ) ,
severe ly i m p a cting t he f a mily b usiness. An HIV di a g nosis in w o m e n c an also in c r ease f a m ily
h e a lt hc a r e exp enses ( 9, 3 7 ), ne cess i t a te f o rc e d s a le of f am ily pr op erties (in clu din g l a nd and houses) to
co ver healt h car e a nd l ivin g e x pens e s ( 9 , 1 9 ), putti ng a ddit i o n al e co n o mi c str a i n o n f a mili e s . This
leaves t he f a m ily in a vi c i ous c y cl e o f d isadv ant ag es in clu ding fo o d i nse c urit y and p overty ( 9, 1 9 ) .
Tabl e 2 be lo w su m m a rises th e qu a lita t ive evide n ce of t he i m p a c ts of HIV on WL HIV a nd t he ir
f a m ilie s .
Tab l e 2 . Qu alit ati ve evid e n c e of t he i m p a c t o f H IV o n WLH IV a nd th e ir f am ilies.
C A T E G O R Y SELECT E D Q UO T ES
PSY CHO L O G I CA L I MP ACT O F H I V ON WL HI V A N D T H EI R F A M I LIE S
Ps y c ho logi c al i mp a ct on
WLH IV
• Dis tress a nd f e a r re l at ed
to m ater n al and c hil d
healt h
• Worr y, s tress and
a nx iety re l ated to t he
ca re for t he c hild and
child f utur e
"I f elt bad, I w a s t h i nki ng; and I w as like I a m s i c k [ HIV p ositive ], then the ch ild is
al s o si c k [H IV p os itiv e ] …. t he t houg hts wer e m an y. …. Thi nk ing a bout m y child
and ho w l o n g she will t ake t hese t a b lets [ ARV S] . W hen a nd h o w wil l s he gro w
w h en s he i s o n t hes e t a b l et s [ AR V s ] ? " Part icipant , Uga nda (5) .
“T h e p atient de ve l o ped a se ve r e r as h, h o wever, t he extre m ity o f h er p a r anoi a a t
t ha t t i m e m e a n t t ha t s he r e m a i n ed a t ho m e f o r f e ar t h a t o t he r s m a y r e c o g n i s e t h i s
as a s ym pt om of ‘the s li m’ (l o c a l s lang f or HIV ). She be ca m e pr ogress ive ly m o re
p ar anoid, …. she a ls o ex pe r ien c e d p a ni c att ac ks” Pa rticipant, Uga nda (12) .
“ I f e a r my c hi l d wi l l b e inf e ct e d wi t h HI V. We a r e HI V po s i t i v e a nd of c o urs e the re
is a hi g h pro b abili t y f or t he child of ge tti ng in fe cted ” Part icipan t, Vi etnam (6 ) .
‘My child ’s he a lt h is n ot v ery goo d. And I fe a r to t a ke hi m f or t he te s t… c os I d on’t
w ant to put o n m ys e lf t hat situ atio n.’ Par ti cipant, Uganda, (3 7) .
“M y hus ba nd a n d I fe a r th at w e will die earl y o n, w he n th e child is two or t hre e
years old only. … . T he child w ho is an o r ph a n will su f fe r g r eat m isery. It will die
soon . H o w will my child li ve? I ca n not im a gi ne w h at it will b e like, I o nly k now
that w e will be i n gre at m i s e r y t oo. ” Participant , Viet nam (6 ).
“I t houg ht I w ould h a ve n o str e ngt h t o edu c ate hi m [h e r so n] b e c aus e I w ould be
he lp l e s s a n d n o t be a b l e t o wo rk f o r my se l f b e cau s e o f HI V. I wa s a l so t hin k i ng
th at if I f all si ck I will n o long er b e st ro ng en oug h t o work f or hi m, get fo o d t o f ee d
hi m , a nd h e wo uld eve ntu a lly di e ” . P ar tic ip an t, Ug and a ( 5 ).
“T h e p atient su f fe r e d f r om a n u m b er o f sy m pto m s o f d epr ession, a lt ho ugh she h ad
not yet re ceiv e d a di agn osis . These sy m pt o ms i n clud e d a nx i ety, i ns o m n ia, p ani c
att ac ks, p oo r co n ce ntr atio n, l ow m o od a n d fe eli ngs o f hopelessness a nd
wo r t hle s sness” Part icipant, Uganda (1 2) .
“I w as s o s car ed t ha t, no w m y b a b y is s ick and i f they te ll m e t hat h e is sick, w ha t
will I do ? I k ept t hin king , n ow will I l ook a fter hi m ; p ut hi m in s c h o ol k no wi ng
that he will die. No w what if I die a nd a m b ur i ed w h o will ever l o ok aft er h i m ?”
Particip ant, Ug an d a ( 5 ).
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• F e e l i n g sa d , ba d an d
emba r ra s se d
Ps y c ho logi c al i mp a ct on
fa mi li e s :
• On c hi l dre n o f WLHI V
‘…t he r e l atives of m y hus b a nd a nd o n m y side a r e not t he p eo p le I t hink I ’ll le a ve
with m y so n i f at a ll I di e. So I’ m w orr ie d ho w r eally I ’ll l e av e hi m …I d o n’t k n o w
ho w m y so n will live. ’ P a rtic ip a nt, U ga n da (37 ) .
“ Ye s, madam, ev e r y d a y I am v er y sa d a bo u t m y self . Be c aus e we c an n ot m o v e
free ly with every on e , like r e gul a r p e o ple. . . At t ha t ti m e [w h en I w a s first
diagn osed], I f elt ver y b ad a b out m y s e lf . I th oug ht, ‘ W hy s h ould I live t his
life?’ …. ” Part icipant, India (16) .
“I f e lt pe ople did n’t wa nt to t alk to m e be ca use I ha d th is dis e as e . I f e lt
em b arr as sed w he n I w as w alk in g o n t he st re et bec a use I us e d to l o ok s o ugly. I wa s
27 an d m y we ig h t w as 27 kg [ 60 po unds] . My hair c olo r was bl a ck, b ut I had l ost
al l m y hai r and l ook e d like a be g g ar. I f e l t that p e o ple would be a fr aid of m e whe n
the y s a w m e . It w as dif fi cult f or m e t o lea ve t he hous e . I used t o lea ve t he hous e
only o n ce a m o nt h, t o pic k u p m y m e di ca tion. It w as like t his for two ye ar s...”
Parti cipant, India (1 6) .
“I c a n' t g o t o the b eauty s h o p. It m akes m e fe el s ad a nd reje cte d. … I c an t alk t o m y
frien d whe n I am s ad or h o pe less ” Part icipan t, Thailand ( 3 1 ) .
“W h e n I told hi m [ a b out HIV st atus ] he cr ie d and said t h a t he is g oin g t o lose his
mot he r. ” P ar tic ip ant, Ha iti (2 5) .
“W he n I told he r tha t (I had HI V), she b e ca m e s ad in fr o nt o f m e. Y ou u nderst a n d ?
Then I s a w tear s co m ing out o f m y e yes. ” P artic ipa nt, H aiti (25) .
“He [ he r so n ] wo uld be s tudyi ng a nd t hen h e wo uld stop an d start t o thi nk. I
would ask hi m wh at is wr on g wit h hi m . ‘ He s aid it is bec a use he sees th at I a m si c k
and I a m g o ing t o die . H e w o n’t ha ve a ny on e to h e lp hi m . Th at m a ke s him s a d. ”
Particip ant, Ha iti (1 9) .
P H Y SI CA L H EAL T H I MPA CT O F H IV O N W LH IV
Poor phys i c al h e a lth of
W L HI V l e ad s to in abi l ity to
w o r k a n d t a k e c a r e o f t h e
ch ild r en
“I did n ot fee l a n y thi n g wr o n g wi th m y bo d y . It is n o w I have a p ro b lem b ec au se I
don ’t f e el m y s tre ng t h at all [d ue t o HI V i llne s s]. …. Yes, t he r e are ti m e s I fe el like I
ca n n ot t a ke ca re of th e m [ he r c hildr en ]. I wo uld w a ke u p i n t he m or ning a nd
would not fe e l any s trengt h s o I w ould st ay i n bed. ” Part icipan t, Hait i (19 ).
“I t i s only m y m o m … . She is th e o ne who takes c a r e o f m e a nd m y c h ildr en [ S he
w a s i ll a nd ve r y w e a k physi c a lly a nd c o u ld not w ork t o ear n i n co m e t o s up p o r t h er
life a nd he r c h ildre n]. ” Parti cipa nt , Hai ti ( 1 9) .
“W he n I went to w ork a t t h e f act ory, I f e lt diz zy, gettin g m or e a n d m o re
e xha usted. It is m o re dif f ic ult tha n b ef ore , as m y h usb a nd did n’t w ork a nym o r e as
a t e a cher, h e n o w is wor k ing as a c onstru cti on wor k er . He l ost his me m o ry. ”
Particip ant, C am b od ia (9 ).
“T he m ost distur bing pr o ble m aff e cti ng m e is th e b urni ng …it bur n s a s if li ke fir e. I
don ’t s le e p. At fir st it w a s the han ds and s h o u l d ers …n o w i t is th e whole body .”
Particip ant, Ug an d a (37) .
I NTI M ATE P ART NE R VI OLE NCE A GAI NST W L HI V
In t imate par tn er vi o lenc e
ag a in st W L H I V
“A fter g ivi n g birt h he st arted tr e a tin g me ba d l y he k new tha t he ha d f i ni s h e d m e
of f bec aus e h e ha d alre ady in fe c t ed m e w ith HIV . I no lo nge r h ad a nyw her e to go.
He st op ped m e fr om worki ng and st opp e d m e fr om c om in g to hospit al to pi ck m y
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me d icat i o n s [A RV s ]” . P articipan t, Ugan da ( 5).
“He said t h a t he would d o b a dly to m e u ntil I die d. A nd he also s aid, ‘‘ I w o n’t g o
any where, I will tre at yo u b adly u ntil you die. …. “ P a rtic ip ant, C a mb od ia (9) .
[H e ] hit o n m y a r ms , a nd s cr at ch ed m y e ye s , boxi ng a nd sl ap pi ng, a nd hit m y
head, so m y he ad w as c ut. Ne ve r s tit c h es a fter he hit m y hea d, k e pt it like t h at.
People a s k e d m e t o di vor c e , b ut I did not. Sin ce I ha v e t o l er ated i t fr o m t h at ti m e, I
don ’t w a nt to divor ce. I agr ee , even al i ve o r dyi n g, we ar e p atients to live with ea c h
oth e r like t his; Hm m m , ho w oft en he did like this … to o m a n y ti m e s , th a t is, I ca n’t
co unt, alm os t e v ery d ay. W he n he beat o ur kid’s h ead hea vily t h a t ne arly bur st th e
kid’s br ain. H e be at her b adly.” P ar tic ip an t, C am b od ia (9) .
SOC I AL I MP ACT O F H I V ON W L HI V A ND T H E I R F AM IL IES
A n tici pate d s tig ma a n d
di sc rimin a tion among
WLH IV
E xt e rn al s ti gm a and
d i s cr imi nati o n a ga ins t
WLH IV
• Fr om f a mily m e m ber s
o Siblings a n d p are nts
“W e ll, I w a s afr a id tha t the
y w o uld dislike m e be c aus e so m e p eo p le he ard or s a w
the ne ws about HIV a nd und e r sto od it while so m e pe o ple did n’t …I did n’t k n ow
whic h of th em w ould a c ce pt it a nd I didn ’t wa nt t o be b other e d by it, s o I did n’t
te ll a nd t ha t w as it” Pa rti cipants, Thaila nd (3 3 ).
“ I have no t to l d a ny on e at wo r k tha t I’m HI V p o s i t i v e fo r fea r I mi gh t lo s e my j ob .
Bec a use I a m a fr aid t h at if I tell the m that I ha ve H IV , they will re m o ve m e f r o m
m y j ob. T h a t ’s w hy I did n o t tell anyo ne … Peo ple wo uld not t ou ch m e [ if th ey
knew I w a s HIV -p ositive]. A nd t he y wo u ld n ot ev e n t alk in c lose pr o xi mity to an
HIV-p ositive p e r so n... T hey w ere afr a id t h at if t he y to u ch m e, t hey would als o ge t
the dis ease. ” Part ici pan ts, India (16) .
“I t houg ht pe o pl e w ould thi nk b a d l y ab out m e, t he y w o u l d s a y sh e do e s n’t ha ve a
husb a nd. S he m us t h ave d one wro ng t hi ngs . Th at ’s the r e a s on s h e got t his. And I
tho ught the y wo uld h at e m e. B ec aus e of t his fe ar, I did not t ell t h e m . Peo ple i n th e
co m m u nity t hink t h at pe o pl e w ho ar e HI V positive m a de b a d choi c es a nd tha t is
the r easo n th e y are HIV p ositive” Part icipa nt s, I ndia (16 ).
“I ha v e o nly t old m y sis te r and m y brot he r -in-law. Som e people have aw a re n ess
and s o m e p eople d o n ot. If I tell pe opl e t hat I am H IV p os itiv e, peopl e will look at
us like we ar e che a p, a nd the y will th in k I a m a st ree t l ady [ sex w orke r ]. B ec aus e o f
this re ason , I d o not t e ll ev e r yon e ” P a rtic ip a nt s, Ind ia (16) .
“D o n't c o ok f or us a ny m o re an d do n 't us e o ur ut ensils . ” Part icipant , Thai land (31 ) .
“D o n't t e ll a nyon e a b o ut you r dise a s e . Pe o pl e w ho get AI D S will die s o o n . O ur
society d oe s n ' t like AI D S .” P artic ip ant, T h a ilan d (3 1) .
“M y f a ther told m e to ge t out of t h e hous e. …. For fo ur y e ars, I st ayed with m y
f a m il y, in a r oo m . N o b ody t ou che d m e a nd nob ody t a lk ed t o m e for f our years . ”
Parti cipant, India (3 2) .
“M y m ot he r tre at e d m e d if fer ently. W he n I w as releas e d fr o m G a nd hi H ospit al,
m y p are nts to ok m e b a c k to t he ir h ouse. One d a y m y m ot her g a ve m e r i ce to e at,
then m y br oth e r ’s d a ught e r asked m e to f e ed her. W h en I w as feeding h e r [ with
my han d s ], my mot he r came an d s a i d , “Wh y a re yo u f e e d i ng he r yo u r ri ce ?” She
said tha t s h e wo uld f e ed he r hers e lf. I tol d my m o t h er t hat I had n ot a lr ea dy eat en
fro m t he s am e pl a t e, and th at is why I w a s fee din g h er. Ot her wise, I w ould n ot
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o Fro m p are nts-in-law
a nd sis te r s-in-law
• Fr om c om m u nity
membe rs (f r i en d s ,
re la t i v e s , n e i ghbo u r s )
• Fr om he a lt h c ar e
pr o fe s sion als
f e e d he r … Some t ime s I th i n k tha t bec au s e o f m
y HI V sta t us a nd m y hu s ban d ’ s
death, I h a v e lots of pro blems and I often get fe d u p wit h m y lif e. Bu t I h av e t o be
al i ve for m y c h ildren . I feel s ad t hat e v er y on e is happy , but I a m un a b le t o be
h appy with them . .. My m ot her ’s s ister also h a s t he s a m e f eelings to wards m e . S he
told m y f a m ily m e m bers t o keep m y pl at e, gl ass , s o a p— ev erythi ng— sep ar at e . S he
would s a y, “ Why yo u ar e al way s a l l owi ng he r to be wi t h yo u p eop l e ?” I h av e
suffer ed a l ot this w a y ” P a rtic ip ant, In d ia (16 ) .
“I ha v e be e n tr eated dif f e r ently by m y siste r . S he did n ot s ay a ny thi ng dir e c tly, b ut
h e r be hav i or c hang ed. S he stores our cl o t h es s e p ar at e f ro m h ers . I ha ve be e n li ving
with HIV for ni ne y ears .. . ” Parti cipant , I ndia (1 6) .
“Si n ce m y husb and died and I c ann ot wo rk to p rov i d e fo o d f o r m y f a mil y -in-l aw,
the y tr ea t m e with a c ol d h e art. I ca n no t l ive t he r e a nym o r e. My m ot her-in-l aw
sold th e hous e t hat m y h us ba nd a nd I bui lt bec a use it w as not y e t registered i n our
na me s .” Parti cipant , I ndia ( 34 ).
“N ot o nly did t hey b l a m e m e , th e y st art ed beatin g m e! And a f ew d a ys lat e r , t hey
th re w m e out o f the hous e . They s ai d ‘Y o u do n ot h a v e g ood cha r a c t er s o y ou go
aw ay ”. Parti cipa nt , India ( 3 2).
“A fter t he dea th of h er husb a nd, t he p ati e nt w as f or c e d to l eav e th eir f a mily h o m e .
With her HI V st atus n o w m or e widely k n ow n a m o n g t he villa g ers , the re put a ti on
of he r f or m er hus ba nd ’s f a m ily was at ris k .” Pa rt icipant , Uga nda (12).
“N ow I d on’t f eel c o m f ort a b le with t he p eo p le i n m y co m mun i t y who c r i t ic iz e me .
Wh en e v er I t alk t o t he m , t hey s ay t h at ‘y o u a re a s i c k pe r so n ” Part ici pant, H aiti
(19 ).
“ Ev e r yon e in t he n e i gh bo r hoo d kn ows . S ti gma i s b i g . M y mo th e r– in - l a w doe sn ’ t
ca re abo ut m e, o nly a b out m y b ab y. Neig hb ors visited o ut o f cu riosity. S o m e k e pt a
distan ce, used bad w ords, and as k ed, ‘‘ How co uld a n HIV -inf ected p ers o n be co m e
a p ar ent ?’ ’ Parti cipa nt , I ndia (34 ) .
‘‘T he fo od selle r did n ot w a nt t o sell f o od to m e with he r b o wl a nd as k e d m e t o g o
h o m e a nd t ak e m y b owl, be ca use she w a s afr aid tha t I w o uld sit th ere a nd af fect
he r c usto m e rs . ’’ Part icipant , I ndia (34 ) .
‘… pe ople w e r e fe a r i ng m e , no-o ne would ev e n co m e to s ee m e… I was just
ne gle cted …by eve n t he cl an, eve n m y r e l ati ve s , eve n m y frien ds. I w as jus t
alon e… ” Pa rticipant s , U gan da (37) .
“S o m eti m e s w he n y ou g et t o the f ac ilit y a nd the y l ook at y ou r doc umen t s an d the y
re a li ze y ou a re i nf e c t e d [ HIV + ], they d o n ot h a ndl e y o u ”. Part icipant, Uganda ( 5 ).
“T h e d o c t ors tre a te d m e well wh en they didn’t kn ow m y stat us. But rig ht a f t e r m y
de livery t h ey f ou nd t hat I w as in fe c t ed, and then the y bec a m e rude . T h ey did no t
tie the u m bilic al c ord i m m edi ately. I w as in so m u ch p ain ”. Part icipant , I ndia (3 4) .
“W h e n the y kn e w m y HIV s ta t us , they sh oute d a t m e and did n ot a llo w m e to sit,
e ve n whe n I was bleeding a nd we a k . T he y asked ot he r p atie nts to k e e p aw ay fr o m
m e . Th en t hey tr ansf erred m e to a spe ci al r o om . W he n I gav e bir t h, th ere was n o
staf f wit h m e . ” Pa rti cipant , India (34) .
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St ig ma and di sc r im in a tion
ag a in st HI V - aff e c t ed f am ily
me mbe rs
• A g ai nst HIV- af fe c t ed
f am ily m em b ers as a
whole
• Ag ains t childr en of
W LH IV by other c h i ldr en
withi n co m m u nity
• Ag ains t childr en by ot her
c hildre n a nd te ac h e r s at
sc hoo l
Impa ct o f HIV dia g n osis i n
moth e r s on chi ldr en’
e d uca tio n
“ Th e ANM a nd s t af f nu r se t hre w the rec o rd s on m
y f a c e a n d asked m e to g o t o
JIP MER f or d elive r y . Duri ng t ha t ti m e m y m e m br a ne s ru ptur ed. So I went to
JIP MER, thro wing m y r ec ords (i n frus tr at ion ) and deli ve r ed there without
disclosing m y H IV s ta t us.” Part ici pant, I ndia (35) .
“[ At the g o ver n m e n t hos pita l ] we ar e tre at e d dif fere ntly, c o m p ar ed wit h n o r m al
peopl e. W e are kept a way. And w hen t he y pr e s c r ibe us m edi c i ne, th ey do s o
wi t ho u t to uch in g u s” Part icipant , I ndia (16 ).
“T he d a y a fter I l ear ned of m y H IV -po s itive s t a tu s, m y y ou nge r s ister-in-law
e s cort e d all o ur ot her f a m ily m e m b e r s to g o to VC T [ volu nt ary co u ns e lling and
te s ting] to get bl o o d tests . She boiled a ll o ur b owls and c h ops ti c ks . A fter t hat, s he
s o l d he r ho u se an d mo ve d a wa y ; she do es n ’ t wa n t to l i ve wi th my hu sba n d an d
me .” P ar tic ipan ts, In d ia (2 0) .
“P eopl e do n ot join us in e a ti ng a nd t hey discri mi n at e agai nst my c h i ldr e n. ”
Parti cipant , Thaila nd (3 1) .
“M y nei g hbour w ould not l e t h er child p la y wit h m y d au g hte r .” Woma n participant,
Thaila nd (3 1) .
“He [ h e r so n ] a lw a ys says that what m a kes h i m sad is that if a c h il d is t a lking t o
h i m an d they tell h i m t h at [y our m o the r has H IV ]. W he n he w as y ou ng e r if a ch ild
cur sed h i m he wo uld co m e and ask m e if I w as re al ly s ick and t ell m e tha t the kids
ar e c ursing at him . No w, t he way it aff ect s hi m is th at t he r e ar e ti m es the childr en
cur se hi m s a yi ng ‘look at you ti sidayi s (lit tle HI V e r ) -- your m o t her h as HIV. ”
Particip ant, Ha iti (1 9) .
“T h ey w e re te a s i ng hi m , t e lling hi m th a t his m oth er is s i ck. ’’ P a r tic ip a nt, H aiti (25) .
‘‘ He t ell s me t hat what m a ke s h i m sad is that so m eti m e s other ch ildr en tell h im
t ha t ( y o u r p a r e n t has HI V ) . ’ ’ P artic ipan t, H a iti (25) .
‘‘ Als o , wha t cre a te s an ot h er little p r ob l em i s t h a t when she g oe s t o s c hoo l . E v e r y
ti me s he has a dis pute wit h the s tude nts in the s cho ol they a l w ays hu mili a t e he r .
Th e y t ell h e r , ‘ D on’t y ou see tha t your m other has HIV ? ’ a nd she a l w ays co m es an d
te lls m e t hat.’ ’ P a rtic ip a nt, H aiti (25) .
“L a s t y e a r m y s o n w as at the s ec o nd gr ad e. H e was o fte n sick a nd had to g o t o
hospit al. T he tea c her told t he ot her c h i ldr e n n ot to play with hi m b e ca use h e w a s
sick. He w as also isol ate d fr om his fr ie nd s b e caus e t he t ea cher pl a ced him at a
sep ar ate d esk. I m u st st and t his discri m in ati on a nd still let m y s on g o to s cho ol. I
alw ays w ar n him not t o pl a y with hi s c l a ss m a tes a nd no t t o s cr at c h or bite t hem ”
Parti cipant, Vietnam (6) .
“W he n I w as ve r y s ic k I wa s be dr i dde n for 4 y e a r s, he [ h er son ] s p en t the 4 y ears
with o ut g oi ng s cho ol. My o t her s on w as goi ng to t he 1 2 th gr a de, h e lost 4 y e a rs as
we ll a nd w as n ot ab le to go t o c l ass . ” Parti cipa nt , Hai ti ( 1 9).
“W he n I w as sick s he [ h e r d au g h t er] s p ent tw o y ears witho ut goi ng t o s cho o l… T he
only ti m es no w s he g oes to s ch o ol and c o m e s b a ck e ar ly is whe n sh e g oes witho ut
fo od. … . Th ere ar e d a ys she goes to s c hool wit ho ut eati ng. I f sh e arr i v es in clas s
af te r t aki ng he r HIV m e di cati on with out e ating , s he d oe s n ’t f e el lik e sh e ca n st ay,
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Famil y s epa rati o n
• D ue t o the sickn ess o f the
m o thers a nd t o g et s a fe
life/bett e r ho m e f or
c hildre n with oth er
f a m ily
• Ab a ndon ed by hus band
so she co m es b ac k ho m e . ” P ar ti cipant , Hait i (19 ) .
“He [ he r so n ] start ed m issing sc ho o l b e ca use I did not h a ve t he opp or tu nity t o
send hi m . I lost w h at I ha d bec a use I s old all I h a d f or t he illn e s s a nd f o r t he olde r
childr en. T his m akes hi m suf f e r be ca use he c an n ot g o to s cho ol.” Pa rt icipant, Hait i
(19 ).
“Y e s , ther e a r e c h a n ges in t he w ay he lear ned. H e f a ile d o ne se m ester . He would b e
studying and then he w o uld stop and s t ar t to th i nk. I would ask h i m what is
wro ng with hi m . ‘ He s aid it is b e c aus e h e s e es th at I a m s i c k a n d I a m g o ing to di e .
He w on ’t h av e a ny on e to he l p hi m . Th a t m a k e s hi m s ad. ” Parti cipant , Hai ti (19) .
“ I had 9 ch i l d r en , bu t 2 a re a l rea d y d e a d. I still ha ve 7 childre n, but o nl y 2 sta y
with m e . W hen we [ she a nd h e r hu sb a n d ] w ere s e r i ously sick, w e g a ve a wa y o ur
childr en, one t o m y s ister-in-law, o ne t o m y sibling. I w as at h o s pit al f o r 8 m o nths .
I though t tha t I w a s a b out t o die , s o all m y rel ative s t ook m y c h ildre n, o n e f o r
ea c h”. P artic ip ant, C am b od ia (9) .
‘‘ Childr en ar e at t he dist ric t a nd livi ng wi th m y br o th er in-l a w t here ’’ Pa rti cipant,
Cambodia (9) .
“I w as p re p ari n g to kill all of m y c hi l dre n, b e ca use m y hu s ban d l ef t me wi t h n in e
childr en. I h a d e ven b oug ht cl oth e s , a r oll [o f bar k clot h] to bur y t he childr en ”
Par tic ip ants , U ga n da (3 7) .
E CON OMI C I MPA CT OF H IV O N W LH I V AN D THE I R FAM ILI E S
• W LH IV lose jobs
• Fa m ily e x pe r ien c e f o od
ins ecurity, hu nger, a nd
po verty
• I ncr e ased f a m ily health -
re la t e d e x pe n d i tur e
“I t [i nfec te d with HIV ] resu l t ed in a lot of p ro blems a lso be ca use I lo s t m y j ob and
co uld n ot wor k. ” Parti cipant , Hai ti ( 19) .
“S o m eti m e s t h ey f ear m e …t h ey f ear eve n co m i ng he r e t o m ak e the hair…t h ey s ay
“t hat on e is HIV — y ou m a y go th ere, s h e m a y d o y our hair and s he ca n put y ou
t he b loo d i n you r h ai r an d ev e n yo u fa l l si c k” Pa rt icipant , Uga nda (37 ) .
“M y f a mily used t o m a ke billbo ar ds a nd s igns for shops, b ut whe n t h e w ard f ou n d
out I was HIV pos itive, the clients s topp ed co m ing. W e ha d t o c l os e th e store. N ow
we mak e mone y b y pack i n g ba b y cl o the s i n bo x e s a t home .” Part ici pant , I ndia (34) .
“I qu alifi ed a fter I w as si ck ly, so I w a s not pos te d as a t ea cher … ho w ca n a te a che r
wo r k to d a y, for tom or r o w y ou a re d o wn.” Part icipant , Uganda (3 7) .
“I t [ HI V illn e s s] a ff ects hi m a lot. F or ex a m p l e , whe n I d o n ot ha ve fo od [bec a use
she f e lt we ak du e t o H IV illness and co ul d n ot wor k] to gi ve hi m [ h er so n] I go t o
m y m o ther’s . I f m y m o the r has f ood t h en I give h i m so m e . I f sh e d o esn’t ha v e fo od
then I a m l e ft with out f ood [t o giv e m y so n]. Part icipant, Hait i ( 19 ).
‘‘T he virus p ut m y f a m ily in p ov e r ty in t he firs t p la ce. br oug ht poverty i n t he fir st
pl ace . It is m or e diffi c ult t ha n bef o r e . P o o r, now a d ay s we a r e p oo r. Bef o r e we had
e n oug h t o eat, b ut n ow, we didn ’t hav e eno ug h.’’ P a rtic ip ant, C a mb od ia ( 9) .
“At ti m es w e [ W LW H ] m e et fin an c i a l p r oble m s. F o r ex a m p le w hen y ou ar e
supp osed to co m e a nd g e t m or e dru gs [A RVs ] you f i nd t hat y o u do n ot hav e
m o n e y f or tr a nsp ort . Y ou g o t o a frie nd t o b orr o w m o n e y a nd yo u fi nd tha t sh e
doe s not ha ve it. S o yo u ex c e ed your ap p oint m ent d at es for a week or m o r e. And
whe n yo u c o m e t o colle c t yo ur dr ugs th e do c t ors do not tr e at you w el l. That a ls o
m a k e s u s f e e l b a d . " Parti cipa nt , Uganda ( 5 ).
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• Sellin g o f f a mily
p r o p er t i es
“W he n w e did n ot have t h e virus , we d o not ne e d t o s p en d muc h mon e y . We can
have so m e m o ney left fr o m o ur little m o n ey. No w we co m e to hospit al every
m o nt h a nd we sp end alm os t 10 0,0 0 0 r i e l [ $ 25 USD ] for t hre e pe ople [e ver y m o nt h].
Particip ant, C am b od ia (9 ).
“For ex am p le, i f w e ear n ed $1 0 U S D fr om r ic e ha rv est, we p aid $3- $ 4 f or fo od a n d
ke pt $ 6- $7 . But now it all g oes for m edi ci ne , n othi ng le ft. I w o r k e very day only f o r
m e di ci n e . W e ge t m o nt hly s al a r y t o p a y f or s pendi ng. My h usb and gets dr ug [ on e
ti me] then I ge t t h e dr ug, we t a ke t urns ”. Particip ant, C am b od ia (9 ).
‘‘I sold m y la nd and e ve r y thi n g [ for her t re at m ent]. N owa d a y s I b orr ow m y
f athe r ’s l and to li ve [o n ]. I have n o t h i ng. I a m ver y p o o r and hav e no m on ey ’’
Woman part icipant (pa r t ic i pa n t no . 15) , 30 ye ars old, C am bodia (9 ).
‘‘ Nothi ng [ w a s ] l e f t, h ouse and oth er thi n gs we r e all sold [t o c ov e r he alt hc ar e
e xp enses f or herself a n d h er husb a nd] ’’ P artic ipan t, C am bo d ia (9 ) .
‘The y [ h er f a m il y m e m bers ] sus p ecte d t hat t h e neig h bour has b ewi t ched h i m [her
husb a nd] …th ey t ook hi m t o th e wit ch d o c t or… t he y sold e ve r y t hing …s old
e ver ythi ng f or his tre at m ent. Th en th e m an died … he d i ed ( whisp ered ). T he n I h ad
lost ev er ythi ng, I was jo ble s s, I h a d n o ho m e , just re nting.’ Par ti cipa nt , Uganda (3 7) .
4. D i s cu s sion
4. 1. Summa ry of fi ndi ngs
T he p r i m a r y o b j e c t i v e o f t hi s r e v i e w w a s t o u n d e r s t a n d t he i m p a c t o f H I V o n W L H I V a n d t h e i r
f a m ilie s in LMI C s. A tot al of 22 s tudie s c om p r ising o f nine q u a ntit a tive a nd 1 3 qu alitati ve studies
we r e i n clud e d i n t his revie w. S ix q u a ntita ti ve ( 7, 1 1, 13, 30, 3 6 , 3 8) and f o ur qu a litati ve s tudi e s ( 5, 1 2 ,
3 2, 3 5) fo c used on explor ing the im p a ct of HIV o n W LH IV , w h ile t wo qu a ntit a tive ( 8 , 20 ) a nd s ix
qu alit a ti ve ( 6 , 9, 19, 3 1, 3 4 , 37 ) studies looke d a t the i m p a c t on W LHI V and th e ir f a m ilies. On e
qu a ntit a tiv e ( 39 ) and qu alit ativ e ( 2 5 ) stud y ea c h only i nv e s tig at ed th e i m p a ct on f am ilies o f WL HIV .
P s y c ho l og i c a l c hal l e n g es f a c ed b y W L H I V we r e p r e s e n t ed i n f i v e q u a n t i t a t i v e s t u d i e s ( 1 1, 2 0 , 3 0 ,
3 6, 3 8), six q u a lit ative s tudie s ( 5 , 6, 1 2 , 1 6, 3 1, 37 ), w hi le t wo q u alit a t i v e studies also repor t e d
psy ch ol ogi c al i m p a ct o n th e w o m e n’ s childr en ( 2 5 ) a nd o n b oth th e w o m e n a n d t he ir childre n ( 1 9) .
P o o r p hy s i c a l he a l t h i m p a c t o n W L H I V ( 9 , 1 9 , 3 7 ) a n d I P V a g a i n s t t he m f o l l o w i n g H I V d i a g n o s i s ( 5 ,
9 ) we r e re p o r te d i n t hese q u a lit ativ e studies. Neg ati v e s o ci al co ns eque n ces o f an HIV di agn o s is in
wo m en, su c h as s tig m a and dis c r i m i n a tion a g a i ns t them withi n f a mily, co m m u n ity, wor kpl ac e and
he a lt h c a r e setting s wer e r ep o r te d in six qu a ntit a tiv e s tudie s ( 7, 8 , 1 3 , 2 0, 3 6 , 38 ), and 1 0 qualit ativ e
s t u di e s (5 , 6, 9 , 12 , 19 , 31 , 3 2 , 3 4 , 35 , 37 ), whi l e s t i gma an d d i s c rimina t i on to war d s t h e i r fa mi l y
m e m bers , espe c i ally childre n withi n f a m i ly, co m m u nity, he alt h ca re a nd sc ho o l s e ttings were re p o r te d
in f iv e qu a litati ve studies ( 6, 1 9 , 25, 3 1 , 3 4) . Ot he r neg ative so ci a l co ns eque n ces o n th e wo m en ’s
f a m ilie s , suc h as f am ily sep ar a tio n, c hil d-par ent c o n fli ct, HIV i m p ac t o n c hi l d re n’ s e d uca t io n a n d
s o c i a l l i f e w e r e r e p o r t e d i n t w o q u a l i t a t i v e ( 9 , 1 9 ) a n d t hr e e q u a n t i t a t i v e ( 8 , 2 0 , 3 9 ) s t u d i e s . N e g a t i v e
ec onomic impac t e xp e ri enc e d b y WLHIV ( 3 7) a n d t hei r f a m i li e s ( 9, 1 9 , 3 4 , 3 7 ) w er e p r es en t e d i n f i v e
qu alit a ti ve studies. One q u antit ative s tudy a ls o r epor t e d e co n o mi c i m p ac t o n f am il y of WL HIV ( 2 0) .
4.2 . An ex p lan atory concep tu al mod el for the im pact of HIV on WL HIV an d th eir families
Two le v els of HIV i m p ac t wer e identifie d: the i m p act o n WL HIV a t a n i ndivid u al l e v el an d on
f a m ilie s af fe ct e d by the w o m en’s HIV dia gnosis . Dr a win g o n th e r evie we d stu die s a nd the co n cept u a l
f ramew ork fo r th e soc i o - ec onomic im pac t o f t he HI V/A IDS e p i d emic on ho u s eh o l d s (42) , a n
ex pl a n at o r y C o n c ep tu a l Mod el f or H IV i m p a c t o n W L HI V and their f a m ilies w a s de ve l op ed t o
visu ally repr e s ent the con ne ctio n betw een the e m e rging t h e m es (see Fig ure. 2 ).
The Mod el dem o nst r at e s th at HIV i nf e c tio n r esults in a r a nge of n eg a tive c onse quen c e s a t t he
individu al and f am ili al level. At t he ind i vidu al le v e l, HIV i nf ectio n ca uses psy chol ogi cal ch alle ng es
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i n c l u d i n g d e p r e s s i o n , a p p r e he n s i o n a n d a n x i e t y o n W L H I V ( 1 1 , 1 2 , 4 3 ) , o f t e n t r i g g e r e d b y c o n c e r n s
t ha t t he w o m e n m a y f a c e a f t e r b e i n g d i a g n o s e d w i t h H I V . T he s e m a y i n c l u d e c o n c e r n s a b o u t t h e i r
po or h e alth c onditio n, H IV s ta tu s, s tig m a , dis c r i min ati on, f a m ily s ha mi ng a n d the fut ure of th e ir
c h i l d re n (11 , 16, 30) . S uch c o nc e rn s re fl ect p s yc ho l og ic a l r e s pon s e s o f WLHI V t o wa r d s t he kn ow l e dg e
ab out their H IV-pos itive st atus a nd t h e p os sibility o f v ari o us neg a ti ve co nse qu e n c e s tha t m a y oc cur t o
th e ms elves o r th eir f a m ilie s ( 44) . Si m il ar ly, HIV inf e c tio n c an c ause psy c ho logi ca l cha ll eng e s on the
wo m en ’ f a m ilie s , e s peci al ly c hildr en, su c h a s f ee lin g u pset, h urt, s a d and w orr ied a bo ut th e m ot her
p o o r h e a l t h c o n d i t i o n o r H I V s t a t u s ( 1 9 , 2 5 ) . H I V c a n a l s o l e a d t o p o o r p hy s i c a l s t r e n g t h w hi c h
influ en ces the ability of WL HIV t o w ork a nd t a k e ca re of t h em s e l ves a nd the ir c h i ldren e f fe cti v ely ( 9,
19 , 37) . T hi s c an l ea d to the wome n b e ing d e pe n de n t o n t h e s up po rt f rom t h e i r ex t e n de d fami l i e s to
fulfil t hei r b asi c nec e s sities a nd to t ake car e of th eir childre n, whi ch are of t e n burd ens o m e for
f a m ilie s , espe c i ally the on es wit h li mit ed r e s o ur ces ( 9, 1 9 ) . Ab us e of W L H IV in a ny f or ms ( e.g.,
physi c a l, ver b a l, s e xu al abus e) by signi fic ant oth ers in c lu ding husb a nds, p a rtne rs a nd in-l a ws due t o
u n a c c e p t a n c e o f w o m e n ’ s H I V s t a t u s ha s b e e n r e p o r t e d i n m a n y L M I C s , f u r t h e r e x a c e r b a t e d b y
s o c i o c u l t u r a l a n d p a t r i a r c h a l s y s t e m s a n d s t r u c t u r e s t ha t r e q u i r e w i v e s ’ s u b m i s s i o n t o hu s b a n d s o r
m a le p ar tn e rs ( 4 5- 49). F or e x a m p le , in s o m e c ult ur e s in Ug and a , Zi mb a bwe, In dia a nd C am b odi a,
husb a nds are dee m ed t o sub m it t o hus ba nds ( 46- 50) . No n - su bmi s s i o n t o hu sba nd s w ou l d r e s u l t i n
s a nct i o n s, i nc lu d i n g b ea t in g , d iv o rce d , c ha s e d f r om home an d no t f inanc ia l l y s up po r t e d (4 6) .
H I V i n f e c t i o n c a n a l s o l e a d t o n e g a t i v e s o c i a l i m p a c t , s u c h a s s t i g m a a n d d i s c r i m i n a t i o n a g a i n s t
WLH IV , re f lec te d in a r a nge of neg ative attitud es a nd beha viour s tow ards the m , in c ludi ng rejec tio n,
insults , avoid a n ce and isol atio n, whi c h m a y b e i m p osed by f a m ily m em b ers , co m m u nity m em b ers ,
he a lt h c a r e pr of e s sion al s , an d em pl oye r s or c olleag ues ( 7, 12 , 1 3) . A di ag n osis of HI V in w o m en c an
also lead t o co urtesy stig m a to wards the ir f a m ily m em b ers, espe c i ally c hildren, m a n ifesting in
rejecti on or n e g ati ve tr eat m e nts by t heir frien ds and s ig nifi c a nt o t hers withi n co m m u nitie s or s ch o o l
settings (8 , 19, 25 , 31, 41 , 51 ). Stigm a a n d dis c r im in ati on t o wards the w o m en th e m selv es a nd a ls o t he ir
f a m ily, are often very d a m agi ng a nd i n m a n y cases le ad t o f eeling s o f rej e c tion, ho peless ne s s, sha m e,
a n g e r , a n d f e a r ( 1 1 , 1 2 , 1 6 , 2 0 , 3 1 ) . N o t a b l y , t he l a c k o f k n o w l e d g e o f H I V t r a n s m i s s i o n a n d
p r e v e n t i o n t h a t i s r e f l e c t e d i n t he f e a r o f a c q u i r i n g H I V i n f e c t i o n t hr o u g h i n t e r a c t i o n w i t h P L H I V i s
o n e o f t he b i g g e s t s o u r c e s o f H I V s t i g m a a n d d i s c r i m i n a t i o n ( 8 , 1 5 , 5 2 ) . S t i g m a a n d d i s c r i m i n a t i o n
tow ar ds W LHI V a nd the ir f am ily s e e m t o also refl ect ps yc holo gi c a l r e s po nse of non-in fe ct e d pe o ple
tow ar ds the kn o wledge a bo ut the existen ce of P LH IV ar ou nd t hem , wh o m ay tr ans mit th e inf e cti o n
to them or th r e aten their health an d life ( 1 7, 1 8 , 4 4).
D e n i a l o f s c h o o l a d m i s s i o n a n d / o r w i t hd r a w a l o f c hi l d r e n f r o m s c h o o l d u e t o m o t he r s ’ i n a b i l i t y
to p a y s c hool f e es a nd pr o v ide ch ildr en ’s basi c n e c e s s ities, discri min atio n, a n d c hildren ’s inv o lv e m ent
i n h o m e d u t i e s d u e t o p o o r he al t h o f W L H I V , a r e a l s o s e r i o u s s o c i a l c o n s e q u e n c es o f H I V o n c hi ld r e n
o f W L H I V ( 4 2 , 5 3 - 5 5 ) . C hi l d r e n o f W L H I V a r e a n a t - r i s k p o p u l a t i o n , t he y o f t e n m i s s o u t o n c r u c i a l
soci a lis a tio n wit h frie nds a nd ex tr ac urri c ul ar a ctivities due to in c re a s e d r e s p o nsibility a t ho m e ( 8, 1 9,
2 0). The s e are ed u cati on al co nse qu enc es that h ind er o pp ort unities f or th eir f u tu re, b u t are oft e n in
co nju n c t ion wit h f ee ling u pset, hur t a n d w orr ie d abo ut the ir m ot h e r’s p o o r he a lth , and/ or bei ng
subje c ted t o discri m i n ation ( 8, 1 9). T he s e c hildre n a r e also at high ris k of m ent al healt h iss ues, often
w i t ho u t a n y s o r t of s u p p o r t i n p l a c e ( 5 6 , 5 7 ) . F o r c e d a n d v o l u n t a r y f a m i l y s e p a r a t i o n s o f c h i l d - p a r e n t
or h us band- wife, ha ve a ls o b e e n re port ed, either d ue to po o r physi cal he a lt h, in ability o f WL HIV t o
tak e c a re o f t heir c hi ldr e n, l a ck of su pp ort, or un ac ce pt a n ce o f wo m en ’s HIV s tat us by hus ba nd o r
p artn er ( 8 , 9, 19 , 37 ). T he l a ck o f su pp ort a nd un ac ce pt a nc e o f wo m en H IV s ta tu s, e s peci a lly by p eo ple
ar ou nd t hem , s u ch as f a m ilie s and f riend s , ca n lea d t o self-isol atio n, l ack of a c cess to he alt h ca re and
t r ea tme n t se rv ice s a n d ina b i l i ty t o c ope w i th va r io u s ch a l l en g e s f a ci n g t h em (1 1, 3 1, 5 8 , 5 9) .
Co ns istent wi t h th e c on s tru cts o f the fr a m e work f or the s o c i o-ec o no m ic i m p a ct o f HIV / AI D S o n
ho u s e h o l d s ( 4 2 , 5 3 , 6 0 - 6 2 ) , r e d u c e d f a m i l y i n c o m e d u e t o l o s s o f e m p l o y m e n t o f i n f e c t e d f a m i l y
m e m bers ( WL HIV or their p art ners/ot h er fa m ily m e m ber s), or loss of a f am ily b usiness , in additio n to
in c r eased f a m i ly he alth e x p endit ure, le ads to ec on o mi c or fi n a n c i al dif fi c ultie s (8, 9 , 37 ). Th e s e
e c o n o m i c conse qu en ce s m a y also lead to h ouse ho ld f o od ins ec urity pr o m pt ing decisions suc h as
selling of f am ily pr operties ( e .g. , l a nd an d ho uses), le a ding to a vi c i o us cy c l e o f p overt y and c a s ca de
of dis adv ant ag e wit hin HIV- af fe cted f a m i lies ( 6 0- 63 ). T his ch ain o f ec ono m i c c o nse quen c e s c an
furt her le ad to dete r i o r a t ion of WL HIV ’ s physi cal a n d ps y c h ol og i c al he alt h ( 21- 2 3) .
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4. 3. Impl icat ions for f ut ure pract ices o r i nt erventio ns
This system ati c re v ie w su m m a ris e s evide n c e on a r an g e o f HI V neg a ti ve c ons e q ue n ces on an
entire f a m ily unit w he n a w o m a n is di agn os e d with HIV in a LM I C. It highli g hts ps y chol ogic al,
physi c a l, so c i a l a nd ec on o mi c as p ects th a t ne e d to be a dd r e s sed i n futu r e r e s p ons es .
4.3 . 1. Addr ess ing s tigm a a nd dis c r i mi n a ti on a gai nst W LHI V and their c h ildr e n
HIV is a stig m atising in fe ctio n, whi c h va r ies a cc o r d in g t o cu l t u r e a n d co n te x t (64 ). Ma n y c u l t u re s
asso ci a t e H IV wit h i m m or a lity thr o ugh an as so c i ati on of t he dise ase with gr o up s dee m e d ‘d evi ant ’
f r o m s o c i a l n o r m s , s u c h a s ho m o s e x u a l m e n , c o m m e r c i a l s e x w o r k e r s a n d d r u g u s e r s ( 6 5 ) . I n t hi s
review, t ho ugh n ot ob vi o us th a t W L HI V we r e linke d wit h any de v i a nt beh a vio urs, their exp erie n c e of
stigm a and discri m i n a t ion w as withi n f a m ily, co m m u nity, he alth ca re and wor k pl a ce s e ttings .
Childr en of WLH IV w e r e also st i g m atise d a nd dis cri mi n a t ed ag a ins t by t he ir f ri ends a n d tea ch ers a t
s c ho o l , a n d b y o t he r c o m m u n i t y m e m b e r s , j u s t f o r b e i n g r e l a t e d t o s o m e o n e w i t h H I V . T h e s e
a pp ear ed to be i nfl ue n c ed by pe opl e ’s a s su m pti on a nd fe a r tha t c h ildre n o f W LHIV c ould a ls o b e
HIV-inf e cted the msel ve s and c o uld tr a nsm it the in fec tio n t o o t h er c h ildren ( 17 , 1 8, 4 4 ) T o r e s po nd t o
HIV-s tig m a an d dis c r i m inati o n e f fe cti vely, inter ve ntio ns should t a r g et not o n ly a t individ u al or
f a m ily lev e ls , but also at co m m u nity and s ocie t al le v els, in clu ding f a m ily, c o m m u ni t y , s chool,
hea l th ca r e an d w o rk p lac e s e t t i n g s .
HIV e du c atio n a nd a w a r eness of its t ra ns miss io n m ethods f or po p ul ation g r ou ps, f a m ilie s and
co m m u nity m e m bers w ould b e a vit a l c o m p one nt o f a ny i nte r v e ntio n, see ki ng t o r aise a ware n ess of
HIV/ AI D S as w ell as ac ce pt a n ce o f W L HIV ( 66 ) . The ai m o f th is would be t o redu ce s tig m a and
d i s c r i m i n a t i o n a g a i n s t W L H I V a n d a l l o w t he i r f a m i l y a n d c o m m u n i t y t o p r o v i d e s o c i a l s u p p o r t ( 6 6 -
6 8). The key stak eho lders in the com m u nity w ould be criti cal in s u pp ortin g a ny HIV inter ve ntio n,
a l l o w i n g t he m t o l e a d t he c o m m u n i t y t h r o u g h t he s t a g e s o f t he i n t e r v e n t i o n ( 6 9 ) . T he i r o p i n i o n s a n d
v alu e s m atte r ( 6 9) . Si m i l arly, ed u c a ti ng a nd in vol ving b ot h PL HIV w ho have had their vir al lo a d
suppr e s sed a nd b ee n o p en ab o ut t he ir HIV status , a nd he a lt h c ar e p ro fe s sion als wh o pr ovide c ar e to
P L H I V , i n t he d e l i v e r y o f s u c h a n i n t e r v e n t i o n w o u l d b e e q u a l l y i m p o r t a n t . T he y c o u l d r e i n f o r c e t he
m essa ging r eg ardi ng HIV tr a ns mis sion a nd s af e ty m easur e s to be ad opt ed. I n vol vem e nt of t he s e
p e o p l e m a y b r i n g s t r o n g e r i n f l u e n c e o n c o m m u n i t y m e m b e r s a n d i n c r e a s e t he l i k e l i ho o d o f
co m m u nity m e m bers receivi ng the int er ve ntio n , w hi c h can lea d to bette r ac ce pta n ce of WL H IV and
othe r PL HIV in g en e r a l and red u c tio n o r eli mi nati on of stig m a an d dis c r im in ati on t ow a rds them
withi n f am ilies, c om m u nities a nd ot her s e tt ing s (70-7 3 ). He alt h s ystems inte rve ntions , s uch as
interv entio n sup p orting HIV p atie nt s e l f- m a n age m ent a nd i m p ro vin g p a tient e ngag e m ent in H IV
ca re ca n also b e us e f ul s trate g ies to build positive self-p er c e ptio ns and co nfid enti ality of W LHIV and
to addr e s s stigm a a nd d i s c r i mi nati on agai nst WLH IV ( 7 4, 7 5) . T hese m a y also lead to r e du ci n g
inter n al is e d s tig m a whi ch oft en co m es fr o m n e g ativ e s e lf - p er cept ions , o ver w orri ed a nd fe a r o f o t her
pe o pl e’s re a ctio ns.
4.3 . 2. Addr ess ing ps y c hol og i c al c hal le ng e s o n W L HI V
De s pit e i m pr ov em e nts in k no wle d ge a bout H IV an d in c re a s e d a cc e s s to HIV tre at m ent and
supp or t a c r o s s the world ( 1 ), an H IV dia g n osis i s st il l found t o i mp ose s ig nif ic a nt ps y c h olog i c al
c ha l l e n g e s o n W L H I V , m a n i f e s t e d i n a r a n g e o f e m o t i o n a l r e s p o n s e s , i n c l u d i n g s a d n e s s ,
a pp re hension a nd a nxie ty ( 1, 5, 16 , 3 8 ). As suc h, i nte r ventio ns ar e n ee d ed th at t a c k le ps yc h olo gi c al
challe ng es f a c e d by W LH IV a nd t h eir f a m ilie s ( 76 ). C o unselling , p ro vide d by a t r aine d HIV-
co uns e llor , could b e a usef ul str a t egy where WL HIV c o uld r ec e iv e psy ch os oci al s u pp ort o n ce the y are
diag nos e d wit h H IV ( 77 ). C ou ns e lling, i n its very n atur e in v o lves s h a r i ng p e r so n a l ex per ie n c e s a n d
fee li ngs, a nd t here f ore c o u nselling s e r v ic e s ne ed t o co ns ide r a nd ac co u nt f or sex, religi ous and
c u l t u r a l a s p e c t s o r n o r m s a n d v a l u e s o f W L H I V w hi c h m a y i n c r e a s e a c c e p t a n c e a n d a c c e s s t o t he
servi ce s ( 7 8 , 7 9) . F am ily co unselling c ou l d be a gre at be nefit f or WL HIV as it c an i n c r ease the ir
u n d e r s t a n d i n g a n d a c c e p t a n c e o f t he i n f e c t i o n , r e d u c e s t i g m a a n d i m p r o v e t r e a t m e n t o f W L H I V ( 6 8 ,
8 0, 8 1 ). Co u nselling i s also re p orted t o i n c re as e p atients’ ad here n ce t o ART whi c h ca n i m p r ov e th e ir
physi c a l he alt h con dition ( 8 2 ). An addition al str a teg y to su pp or t WL H IV would b e to pr o vid e H IV
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p e e r s u p p o r t g r o u p s , p r o v i d i n g t he m w i t h o p p o r t u n i t i e s t o s h a r e i n f o r m a t i o n , e x p e r i e n c e s , a n d g a i n
s u p po rt f rom o t he r s (7 0, 7 2 , 7 3) .
4.3 . 3. Addr ess ing e con o m i c i m p a ct of H I V on WL HIV a nd t he ir f a m ilies
T o a d d r e s s t h e e c o n o m i c i m p a c t o f o n H I V o n W L H I V a n d t he i r f a m i l i e s , s o m e s t r a t e g i e s t ha t
co uld be used ar e the pro vision of s k ill trai ning based o n W L HIV ’ inter e s ts and s ta r t-up c a pit al f or
their ow n b us ine s s, w hi ch h av e be en re p o r ted else wh ere ef fe c ti ve i n s u pp orting e co no m i c
e m p o w er m e nt a nd r e du ci ng HIV v uln er ab ility a m o ng PLHI V ( 8 3- 86 ). The pr ovis ion of tr ai ning and
s t a r t - u p c a p i t a l f o r W L H I V c a n b e d o n e i n c o l l a b o r a t i o n b e t w e e n g o v e r n m e n t a n d o t he r s e c t o r s s u c h
as NG Os t hat ca n pro vide co nti nu ou s supp ort, g uid an ce a nd sup ervis i o n. In additio n, HIV
interv entio ns that c o nsider a br o ader c o nt ext o f w om e n’s live s , in cludi ng thei r r e s po nsibility for
ho useh old a nd cari ng role withi n f a m ily ar e al s o rec o m m ended ( 83 ). Furt her m o re, t h ere h a s to be fr ee
a c c e s s t o H I V - r e l a t e d he a l t h c a r e s e r v i c e s f o r W L H I V w hi c h w o u l d d e f i n i t e l y r e d u c e f i n a n c i a l b u r d e n
o r e x p e n s e s f o r he a l t h c a r e ( 8 7 , 8 8 ) . I t i s a l s o i m p o r t a n t t h at m u c h m o r e n e ed s t o b e d o n e, p a r t i c u l a r l y
i n i m p r o v i n g t h e q u a l i t y a n d a c c e s s o f s e r v i c e s t o e a s e t he b u r d e n o f he a l t h c a r e e x p e n s e s t h r o u g h
pro vision o f fre e or su bsidis e d h e alth ca re insur a n ce. An ex am p le of su c h strategy has been
i mpl em e nted in I ndon esia, wh ere P L HIV a r e eq uip ped with he a lt h insur a n c e pr ovid e d by
gov e r n m e nt, whi c h en a ble s t h e m t o ha ve f ree a cc e s s to he alth ca re ser vi c es ( 8 9 ).
4.4 . Im plic a tion fo r fut ur e stu d ies
N o n e o f t he r e v i e w e d s t u d i e s f o c u s e d o n p s y c h o l o g i c a l i m p a c t o f H I V o n H I V - a f f e c t e d f a m i l y
m e m bers of W L HIV, tho ugh s o m e st udies r e por te d s ca nt in f o r m atio n rel ated to ps yc holo gi c al i m p a c t
on c hildre n. Si m il arly, n o studies reviewe d loo k ed a t s tig m a a n d dis c r im i n a tion ag ai nst fa m ily
m e m bers o t her t ha n childr en, nor ex plor e d th e i m p ac t of w o m en ’s H IV stat us o n the em pl oy m ent o f
f a m ily m e m b e r s. The r o le t h at cultur al a nd re ligi ous v al ues, n o r m s a nd t houg hts p lay in e x a cerb a ting
the i m pa c t of HIV o n W L HIV a nd the ir f am ilies in LM IC s w a s a ls o a t opi c not c overe d. Als o , n on e of
the s tudie s r e vie wed e x plor ed the im p a ct of th e w o m en’s HIV-p os itive status on their a cc e s s t o
he a lt h c a r e servi c e s o r ART. F uture studi e s that a d d re s s all of t he a s p ects are r e co m m ende d in o r de r t o
deve l o p s peci fi c and e f f ecti ve int e r ve ntions t a ilor ed to spe cifi c e n vi r o n m ent a n d s e t ting s , for b o th
WLH IV a nd t h eir f a m ily m em b ers. For e xa m ple, findi ngs of f ut ure studies that explo re the i m p a c t of
H I V o n t he w o m e n ’ s a c c e s s t o A R T c a n b e u s ed t o i m p r o v e HI V - r e l a t ed he al t hc a r e s y s t e m , t a i l o r H I V
ca re ser vi ce d eliv e ry to add re s s the need o f PL HIV a nd su pp or t t heir h e a lt h a nd wellbe ing.
4.5 . Limita tion of the stu d y
This r e vi ew only i n clu de d s tudi e s c o nd u c t e d i n LM IC s. T hus, evid e n c e o n t he lived e x p erie n c es
of WL HIV in develope d c o u ntr ie s a b out th e i m p ac t of HIV o n the ms elv es a nd t heir f a m ilie s was no t
co vere d in this re view. To b uil d a co m pr ehe nsive pi c t ur e o f HIV i m p ac t f a c i n g W L HIV a nd t he ir
f a m ilie s , f ut ure liter atur e re views tha t in cl ude s tudi e s on t h is topi c con du ct e d i n deve l o ped co u ntries
ar e a ls o r ec o m m end ed. Anot her li mit atio n is th a t t h is re view i n c lu ded E nglish pe e r re v ie w lite r a t u re
only, thus m ay have missed stud i es o n t his topi c , wh i ch a re r e p or te d i n othe r l an g u ag es.
5 . Conc l usi o ns
The Co n ce ptu al Mod el sh ow n i n this revie w pr esents e viden c e th a t a n H IV di a g nos is brings a
nu m b e r of signi fi ca nt, p ers istent, an d neg ati v e co nse qu e n c e s f or WL HIV a nd t he ir f a m ilie s . This
Mod el m ay assis t in de s igni ng inte r ven tions that address psyc hol ogi c a l, ph y s i cal, IPV , so ci a l and
e c o n o m i c needs to ensu re t hat WL HIV a nd t h e ir f am ilies ha ve the b est q u ality o f life, and t h e sup port
they ne e d to t hri ve eve n in th e f ac e o f a HI V di a g n osis .
Ethics approv a l a n d co nse n t to part icip a t e : Not a ppl i c a ble
Dat a a vail abil ity : A ll d a t a g e ner a ted or an aly sed dur in g this s tudy are i nc l ude d in this publishe d ar ticle
Conflicts of in t e rest : Authors de cl a r e d no c onflic t of i n te res ts
Fundin g s t at eme nt: Th is stu dy di d n o t r ece i ve fu nd ing from an y inst ituti ons
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Ac k nowl edgm ent s: N ot a p pl i c a b le
Suppl e men t a ry M at e r ials : A pp e ndix 1 : Fu ll s e ar c hing strate gy by d a t a b ases, A pp endix 2: JBI Criti c a l
Ap pr ais al instr u m ents , Ap pe ndix 3 : Ass e s sm ent of m et hod o l ogi cal q u ality, PRI S MA 2 00 9 ch e c klist :
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