HI V POSI TI VE MOTHERS’ BELI EFS ABOUT MOTHER-TO-CHI LD TRANSMI SSI ON
1Lis Apar ecida de Souza Nev es2 Elucir Gir3
Neves LAS, Gir E. HI V posit ive m ot hers’ beliefs about m ot her- t o- child t ransm ission. Rev Lat ino- am Enferm agem 2 0 0 6 set em br o- out ubr o; 1 4 ( 5 ) : 7 8 1 - 8 .
Beliefs can influence healt h behavior. This qualit at ive st udy aim ed t o underst and t he beliefs t hat influence HI V posit iv e m ot her s’ behav ior s t ow ar ds pr ev ent ion m et hods against m ot her - t o- child t r ansm ission. Four t een w om en w er e in t er v iew ed . Ou r r esear ch w as b ased on t h e t h eor et ical Healt h Belief Mod el, f or m ed b y t h e follow ing dim ensions: per ceiv ed suscept ibilit y , per ceiv ed sev er it y , per ceiv ed benefit s and per ceiv ed obst acles. Dat a analysis show ed reflect ions t hat evidence t he paradox in t he AI DS epidem ic: know ledge does not change behav ior ; gender r elat ions; fear of deat h; fear of st igm a; financial pr oblem s; disbelief in t he v ir us’ ex ist ence. I dent ifying beliefs and under st anding how t o influence t he conduct ion of t he healt h pr oblem can help ser vices t o pr om ot e pat ient s’ adher ence.
DESCRI PTORS: HI V; acqu ir ed im m u n odeficien cy sy n dr om e; disease t r an sm ission , v er t ical
CREENCI AS DE LAS MADRES SEROPOSI TI VAS
RESPECTO A LA TRANSMI SI ÓN VERTI CAL DEL HI V
Las cr eencias son capaces de influenciar el com por t am ient o del hom br e. El obj et iv o de est e est udio cualit at iv o fue com pr ender las cr eencias que influencian el com por t am ient o de las m adr es HI V r espect o a las m edidas profiláct icas de la t ransm isión vert ical. Fueron ent revist adas 14 m uj eres port adoras de HI V. Los dat os fuer on analizados ut ilizando com o r efer encial t eór ico el Modelo de Cr eencias de la Salud, que es com puest o por las dim ensiones de suscept ibilidad percibida, severidad percibida, beneficios percibidos y barreras percibidas. Fu er on obser v adas las con t r adiccion es de la epidem ia de SI DA: el con ocim ien t o n o m u da com por t am ien t o; m ied o d e la m u er t e; su b est im ación d el HI V; d if icu lt ad es f in an cier as; n o cr eer en la ex ist en cia d el v ir u s. I d en t if icar y com p r en d er las cr een cias p u ed e ay u d ar los ser v icios d e salu d a p r om ov er la ad h esión d e la clien t ela.
DESCRI PTORES: VI H; síndr om e de inm unodeficiencia adquir ida; t r ansm isión v er t ical de enfer m edad
CRENÇAS DAS MÃES SOROPOSI TI VAS AO HI V
ACERCA DA TRANSMI SSÃO VERTI CAL DA DOENÇA
As cr enças par ecem influenciar dir et am ent e nas at it udes dos ser es hum anos. Nest e est udo qualit at ivo buscam os ident ificar as crenças que influenciam a adesão das m ães port adoras do HI V às m edidas profilát icas da t r an sm issão v er t ical. For am en t r ev ist adas 1 4 m ães sor oposit iv as. A an álise f oi f eit a u t ilizan do- se com o r efer en cial t eór ico o Modelo de Cr en ças em Saú de, com post o das dim en sões: su scept ibilidade e sev er idade per cebida, benefícios e bar r eir as per cebidos. Dos dados em anar am r eflex ões que ev idenciam as cont r adições da epidem ia: o con h ecim en t o n ão det er m in a m u dan ça de com por t am en t o; r elações de gên er o; aids com o doença do out ro; m edo da m ort e; evit ar pensar na doença; m edo do est igm a; dificuldades financeiras; descrença na sua ex ist ência. Concluím os que a ident ificação das cr enças e a com pr eensão de com o est as influenciam o com port am ent o hum ano frent e a um problem a de saúde pode det erm inar a ação dos serviços e a form a com o est a ação dev e se pr ocessar .
DESCRI TORES: HI V; síndr om e de im unodeficiência adquir ida; t r ansm issão v er t ical de doença
1
Paper ext ract ed from t he Mast er ’s Thesis; 2 RN, M.Sc, em ail: [email protected] .br; 3 RN, Full Professor, em ail: [email protected]. Universit y of São Paulo at Ribeirão Pret o College of Nursing - WHO Collaborat ing Cent re for Nursing Research Developm ent
I NTRODUCTI ON
H
I V infect ion rat es am ong wom en have been incr easing all ov er t he w or ld, causing concer n aboutm ot h er - ch ild t r an sm ission .
I t is est im at ed t hat bet w een 15 and 30% of
ser oposit iv e m ot her s’ childr en cat ch t he v ir us dur ing
pr egnancy, deliver y, bir t h or br east feeding. Based on
t h e A CTG 0 7 6 p r o t o c o l , t h e M i n i s t r y o f H e a l t h
i m p l e m e n t e d p r e v e n t i o n m e a s u r e s a n d , d e s p i t e
difficu lt ies, in ciden ce lev els of aids in ch ildr en h av e
display ed a pr ogr essiv e decr ease in Br azil in r ecent
y ear s. Th e ad op t ed m easu r es in clu d e: of f er in g t h e
ant i- HI V t est t o all pregnant wom en; specialized care
wit h ant iret roviral t herapy ( ARV) t o wom en diagnosed
as HI V posit iv e; adm inist r at ion of inj ect able ARV t o
par t ur ient w om en dur ing deliv er y ; adm inist r at ion of
or al AZ T t o n ew b or n s u n t il t h e six t h w eek of lif e;
su p p r ession of b r east f eed in g ; sp ecialized f ollow - u p
of children unt il t he diagnosis has been defined( 1).
Th e c o m b i n a t i o n o f r e c o m m e n d e d
i n t e r v e n t i o n s f o r t h e p r o p h y l a x i s o f v e r t i ca l HI V
t r an sm ission h as br ou gh t dow n t r an sm ission lev els
t o less t han 1%( 1).
Achieving and m aint aining decreased infect ion
risks in children requires not only t rained professionals
t o follow m ot hers and children, but also t he m ot hers’
a c t u a l p a r t i c i p a t i o n t o c a r r y o u t a l l o f t h e
r ecom m en d ed in t er v en t ion s. How ev er, m ot h er s w ill
o n l y a d h e r e t o p r e v e n t i v e t r e a t m e n t i f t h e y a r e
sensit ized t o t he idea t hat t heir baby can be infect ed
and t hat , t o av oid t his infect ion, t hey need t o follow
a l l r e co m m e n d a t i o n s. Th e m o t h e r s’ a d h e r e n ce i s
fundam ent al t o decr ease infect ion r isk s in childr en.
Ad h er en ce is a p r ocess of lear n in g h ow t o
deal w it h econom ic, social and indiv idual difficult ies,
considering t he fact t hat , nowadays, t he m ost affect ed
populat ion com es fr om low er social classes, w it h low
e d u c a t i o n l e v e l s , c o n f i r m i n g t h e e p i d e m i c ’ s
im poverishing t endency( 2). The com plexit y of aids does
not only involve t he cognit ive side of know ledge and
infor m at ion, but also behav ior al changes.
I n ou r p r of ession al p r act ice, w or k in g w it h
se r o p o si t i v e p r e g n a n t a n d p u e r p e r a l w o m e n , w e
f o u n d t h a t , a l t h o u g h m o s t m o t h e r s a d h e r e t o
pr ev en t iv e t r eat m en t , som e of t h em do n ot at t en d
p r en a t a l ca r e o r d o n o t a d eq u a t el y f o l l o w h ea l t h
pr ofessionals’ r ecom m endat ions. These obser v at ions
gav e r ise t o a ser ies of r eflect ions: do t he m ot her s
consider aids as a ser ious disease? Do t hey believ e
t h ey can t r an sm it t h e v ir u s t o t h eir ch ild? Do t h ey
believ e t hat cor r ect follow - up can benefit t he child?
These r eflect ions m ot iv at ed us t o dev elop a
st udy aim ed at underst anding t he reasons t hat m ade
HI V posit iv e m ot her s adher e t o v er t ical t r ansm ission
pr ev ent ion m easur es. This m eans under st anding t he
in flu en ce of en v ir on m en t al an d psy ch osocial fact or s
i n t h ese m o t h er s’ b eh av i o r. Am o n g t h ese f act o r s,
b e l i e f s se e m t o e x e r t d i r e ct i n f l u e n ce o n h u m a n
beings’ at t it udes.
Thus, in t his art icle, we aim ed t o ident ify t he
beliefs t hat influence HI V posit ive m ot hers’ adherence
t o v er t ical t r ansm ission pr ophy lact ic m easur es.
METHODOLOGY
We car r ied ou t a d escr ip t iv e st u d y w it h a
qualit at iv e appr oach, w hich em phasizes t he w or ld of
m eanings of hum an act ions and r elat ions, an aspect
t hat cannot be quant it at iv ely per ceiv ed or caught( 3).
Th e Healt h Belief Mod el - HBM( 4 ) w as u sed as t h e
t h eor et ical f r am ew or k , w h ich seek s t o ex p lain t h e
a d o p t i o n o f p r e v e n t i v e b e h a v i o r s a n d e s t a b l i s h
r e l a t i o n s b e t w e e n i n d i v i d u a l b e h a v i o r a n d so m e
in div idu al beliefs.
Th e p r elim in ar y ch ar act er ist ics of t h e HBM
co n si d er t h at , f o r i n d i v i d u al s t o ad o p t p r ev en t i v e
m easu r es, t h at is, t o av oid diseases, t h ey n eed t o
believe in t hree aspect s: t hat t hey are suscept ible t o
t he disease; t hat t he occur r ence of t he disease w ill
cause at least m oderat e changes in som e com ponent s
of t heir life; t hat t aking a part icular act ion should exert
beneficial effect s, reducing t hese persons’ suscept ibilit y
t o a sp ecif ic con d it ion , d ecr easin g it s sev er it y an d
det ach in g it f r om m or e im por t an t bar r ier s, su ch as
cost , conv enience, pain, em bar r assm ent( 4). The HBM
b a si ca l l y i n v o l v e s o f f o u r d i m e n si o n s: p e r ce i v e d
su scept ibilit y, per ceiv ed sev er it y, per ceiv ed ben ef it s
an d per ceiv ed bar r ier s.
The t arget populat ion consist ed of HI V posit ive
w om en , w h ose p r eg n an cy r esu lt ed in liv e b ir t h s in
Ribeirão Pret o in 2004. The following inclusion crit eria
were considered: realizat ion of birt h in Ribeirão Pret o;
living in t he cit y of dat a collect ion; good physical and
em ot ional condit ions; t he child should be at least six
m ont hs old and under t he m ot her ’s car e; agr eem ent
t o part icipat e in t he st udy. I n 2004, 49 children of HI V
posit iv e w om en w er e bor n, 20 of w hom at t ended t o
addresses at t he m om ent of dat a collect ion, t he final
sam ple consist ed of 14 w om en.
Dat a w er e collect ed t hr ough sem ist r uct ur ed
int erviews, recorded at t he wom en’s hom e and guided
by a specific inst rum ent . This inst rum ent was divided
i n t w o p a r t s: t h e f i r st a i m ed t o ch a r a ct er i ze t h e
part icipant s, and t he second asked guiding quest ions,
based on t he t heor et ical r efer ence fr am ew or k : w hat
ar e y our beliefs and per cept ions about HI V/ aids and
t he possibilit y of t r ansm it t ing it t o y our child? What
b e n e f i t s c a n t h e b a b y r e c e i v e f r o m y o u d o i n g
t reat m ent correct ly? What are you difficult ies t o realize
t r eat m en t adequ at ely ?
D u r i n g t h e v i s i t , t h e f r e e a n d i n f o r m e d
c o n s e n t t e r m w a s r e a d , a n d s e c r e c y a n d
confident ialit y of dat a w as guar ant eed. Par t icipant s’
nam es w er e r eplaced by flow er nam es t o guar ant ee
t h e i r a n o n y m i t y . D a t a w e r e c o l l e c t e d b e t w e e n
Nov em ber 2004 and Januar y 2005.
The r ecor ded int er v iew s w er e t r anscr ibed by
t h e r esear ch er. Th e Con t en t An aly sis m et h od( 5 ) was
u sed f or d at a an aly sis, cov er in g p r e- an aly sis, d at a
ex plor at ion and r esult int er pr et at ion. Cont ent s w er e
select ed, coded and insert ed in t he dim ensions of t he
t h eor et ical f r am ew or k .
Th e p r oj ect w as assessed b y t h e Rib eir ão
Pr et o Mu n icip al Healt h Secr et ar y an d ap p r ov ed b y
t h e Resear ch Et h ics Com m it t ee at t h e Un iv er sit y of
São Paulo at Ribeir ão Pr et o.
RESULTS AND DI SCUSSI ON
We i n t e r v i e w e d 1 4 m o t h e r s , w h o w e r e
bet ween 15 and 37 years old; t en of t hem had a fixed
par t ner. Only t w o par t icipant s possessed m or e t han
t en y ear s of ed u cat ion an d f iv e h ad w ag ed w or k ;
fam ily incom e cor r esponded t o up t o t hr ee Br azilian
m inim um wages in 12 cases. Two part icipant s did not
at t end prenat al care, despit e knowing t hat t hey were
HI V p osit iv e; all w om en p ar t icip at ed in sp ecialized
follow - up for t he child.
The sem ist r uct ur ed int er v iew s r ev ealed unit s
of m eanings, originat ing cat egories t hat were insert ed
in t he dim ensions of t he t heor et ical fr am ew or k .
Per cept ion of Suscept ibilit y
S u s c e p t i b i l i t y r e f e r s t o t h e i n d i v i d u a l ’ s
subj ect ive percept ion of exist ing risks. The accept ance
of suscept ibilit y varies, wit h people who can deny any
possibilit y of cont r act ing a disease; ack now ledge t he
possibilit y, bu t lit t le pr obabilit y ; or per ceiv e a t r u e
r isk of con t r act in g it( 4 ). We id en t if ied t h e f ollow in g
cat egor ies: k n ow ledge, gen der r elat ion s, con cept of
r isk gr oups, suscept ibilit y of childr en.
Kn ow led g e
When we asked t he int erviewed wom en about
t heir know ledge on HI V, alm ost all of t hem indicat ed
t h ey k n ew ab ou t t r an sm ission f or m s, ev en b ef or e
get t ing infect ed.
I know it ’s t ransm it t ed t hrough t he blood and ot her
t hings as well, like sexual relat ion, cont am inat ed syringe ( Rose) .
You cat ch it by having sex w it h anot her person, or
t aking inj ect able drugs ( Hydrangea) .
I t is t ransm it t ed t hrough cont act w it h blood and in
sexual relat ions like I had ( Pet unia) .
I k n ow it ’s t r an sm it t ed t h r ou g h sex u al r elat ion s,
cont act s w it h inj uries, t hrough blood ( Geranium ) .
A r e c e n t B r a z i l i a n s t u d y o f t h e a d u l t
populat ion’s knowledge about HI V infect ion point s out
t hat 91% m ent ion sex ual r elat ion as a t r ansm ission
form( 6). However, knowledge alone does not guarant ee
t hat t his infor m at ion w ill act ually be under st ood and
incor porat ed int o behav ior.
Gen der r elat ion s
I n sex ual HI V t r ansm ission, gender r elat ions
m ak e b ot h p ar t n er s f r ag ile an d v u ln er ab le. I n ou r
cu lt u r e, m en n eed t o b e v ir ile an d p ow er f u l, w h ile
w o m e n h a v e t o b e su b m i ssi v e , cr e a t i n g a so ci a l
co n t e x t t h a t m a k e s n e g o t i a t i o n s a b o u t sa f e se x
d if f icu lt an d t u r n s w om en m or e v u ln er ab le t o HI V
in f ect ion .
I only used a condom during pregnancy, aft erw ards I
st opped. He doesn’t like it ( Marigold) .
I knew I should use one ( condom ) , but I got involved
wit h a person from São José dos Cam pos and he didn’t like t o use
one, and t hen I got pregnant ( Cam om ille) .
The ideal of rom ant ic love and t rust in one’s
p a r t n e r a r e st i l l d e t e r m i n a n t f a ct o r s i n w o m e n ’ s
vulnerabilit y t o HI V infect ion. I n m aint aining a st able
affect iv e r elat ion , t h ey do n ot per ceiv e t h e r isk , as
illust r at ed by t he follow ing st at em ent s:
I t ’s t ransm it t ed t hrough sexual relat ions, and I believed
t hat , as it was only one person, but I had it , I was confident
I didn’t use a condom because I was m arried, I like
him a lot , I couldn’t im agine t hat . I blam ed m y husband because
he already knew but didn’t t ell m e because he was afraid of losing
m e; I even want ed t o leave him , but t hen we t alked and t hings
went bet t er ( Pet unia) .
Lon g r elat ion s giv e w om en t h e f eelin g t h at
t hey are im m une, and t rust in t heir part ner, t he basis
of love relat ions, does not consider m en’s earlier life.
Fi d e l i t y a n d t h e m a r r i a g e s i t u a t i o n e m e r g e a s
im m unizat ion against infect ion; liv ing w it h som eone
you love and t rust in one’s part ner facilit at e risk denial.
Trust and fidelit y are t he m ain reasons why t he couple
does not use a condom t o prevent sexually t ransm it t ed
infect ions and aids( 7).
Concept of r isk gr oups
Al t h o u g h t h e ep i d em i c w as d i sco v er ed 2 5
y ear s ago, r isk gr ou p con cept s per sist in t h e social
im agin ar y, con t r ibu t in g t o t h e per cept ion of aids as
t he ot her person’s disease, and giving t he false feeling
of dist ance fr om danger.
St u dy , w e alw ay s st u dy , k n ow , w e alw ay s k n ow ,
everything. I knew it was through sexual relations, that you couldn’t
have different part ners, drugs use, but I never expect ed it would
happen. I was shocked when I went for prenat al care, because I
had never expect ed t his, neit her did he by t he way, because he had
anot her girlfriend before m e who was also very correct ( Jasm ine) .
The initial belief that aids is a disease restricted
to certain “risk groups” is still one of the im pedim ents for
prevention in wom en, who im agine that “only other people
can cont ract HI V”. This false rat ionalizat ion is closely
related to the fact that, for a long tim e in the history of
t he epidem ic, inform at ion about aids was t ransm it t ed
with the idea that risk groups existed, which referred to
highly stigm atized types - prom iscuous people, addicts,
perverts(8). Nobody wants to identify with these risk types.
Ther efor e, pr ev ent ion act ions need t o cov er
gender differences and t he deconst ruct ion of t he risk
group concept for wom en t o underst and and perceive
t heir suscept ibilit y t o HI V/ aids.
Suscept ibilit y of childr en
Wo m en w h o al r ead y k n ew t h ey w er e HI V
p osit iv e b ef or e g et t in g p r eg n an t d em on st r at ed t h e
per cept ion of suscept ibilit y r elat ed t o t he child:
I t hought it w as very risky, t hanks God his t est w as
negat ive. I knew I could pass on t he virus, but it happened, I
w asn’t using a condom ( Begonia) .
Once, he was dying t o have a kid, but I said, you know,
I don’t have t he courage, t o st op t aking t he pill by m yself; if I
have t o get pregnant one day, it will happen by t aking m edicat ion.
And it happened... ( Marigold) .
I was so scared t hat I kept on going t o church t here, in
t he cat hedral, t he whole nine m ont hs, and I kept asking oh m y
God, don’t do t hat t o m y child ( Hydrangea) .
They were aware of t heir babies’ suscept ibilit y
a n d e x p r e s s e d t h e f e a r t h e y f e l t a b o u t g e t t i n g
pregnant . Wom en wit h high- risk pregnancy are afraid
and hold ont o m edical and/ or div ine pow er t o k eep
u p t h e h ope of seein g t h eir h ealt h y baby( 9 ). I n t h e
s a m e w a y , s e r o p o s i t i v e w o m e n a r e a f r a i d o f
t ransm it t ing t he virus t o t heir children and know t hat
t his is a concr et e possibilit y.
Per cept ion of Sev er it y
Th e per cept ion of sev er it y is r elat ed t o t h e
em ot ional st im ulus creat ed by t hinking about a healt h
p r ob lem an d t h e con seq u en ces p eop le b eliev e t h is
cou ld pr ov ok e in t h eir liv es. Feelin gs r elat ed t o t h e
severit y of cont ract ing a disease or leaving it unt reat ed
m ake people assess t he result ing clinical and physical
c o n s e q u e n c e s , s u c h a s p a i n , t e m p o r a r i l y o r
perm anent ly decreased physical and m ent al funct ions,
possible social consequences, as im plicat ions for work,
f am ily lif e an d/ or social r elat ion s, or ev en deat h( 4 ).
This dim ension revealed t hree cat egories: not t hinking
about HI V, fear of deat h and r eligious belief.
Not t hinking about HI V
There are t wo clearly delim it ed periods in t he
hist ory of aids: before t he 1990’s, when t he im age of
aids connect ed t o despair and deat h pr ev ailed; and
aft er, w it h t h e u se of an t ir et r ov iral m edicat ion . Th e
arrival of t his t herapy in 1996 brought t he perspect ive
t hat aids would t urn int o a chronic disease, com pat ible
wit h survival, which had been unknown unt il t hen, and,
m ainly, wit h considerable preservat ion of qualit y of life.
This perspect ive was confirm ed in st udies t hat show a
significant increase in t he survival rat es of aids pat ient s
af t er t h is per iod, t oget h er w it h a decr ease in
aids-relat ed hospit alizat ion and m ort alit y rat es in Brazil( 10).
This percept ion is felt by wom en wit h HI V who
h av e n ot m an ifest ed an y sy m pt om s y et , dism issin g
t he ex ist ence of t he v ir us t o a secondar y lev el.
She said t hat I only have HI V, and t hat I shouldn’t
You t ake it , t he viral load get s down and you cont inue
living norm ally, it ’s chronic. I t ’s som et hing t hat won’t kill m e
( Jasm ine) .
Ten years ago t here w as not hing t o do; t oday t here’s
t he cockt ail ( Violet ) .
Th ey k n o w t h a t t h ey h a v e t h e v i r u s, b u t
st r u ggle again st get t in g in con t act w it h t h is r ealit y
which, besides being painful, im poses a new direct ion
in t heir liv es. This r ev eals t he cont ex t ual com plex it y
of aids, loaded w it h con t r adict ion s an d in coh er en ce
of hum an beings’ feelings.
I prefer not t o get so worried, if not I ’ll get depressed.
So I prefer not t o concern m yself t oo m uch, because it ’s already
here in m y God, you see. I have t o lead m y life ( Marguerit e) .
I f I put it int o m y head t hat I ’m gonna die, it ’s no use,
I ’m gonna get depressed and die anyway ( Marigold) .
Du e t o t h e f act t h at aids is st ill associat ed
w it h deat h, one w ay for pat ient s t o sur v iv e w it h an
HI V posit ive diagnosis is t o dism iss HI V t o a secondary
level, not allowing it t o occupy a large space in t heir
liv es.
Fear of deat h
At t h e sam e t im e as con sid er in g HI V as a
lesser ev il and, again, highlight ing t he com plex it y of
aid s an d it s con t r ad ict ion s, t h e f ear of d eat h an d
depression, which som e wom en t ry t o get away from ,
m ay ev en seem a nor m al r eact ion t o t hese w om en,
t o t he ex t ent t hat it m anifest s t he feelings of “ loss”
der iv ing fr om t he disease:
I ’ve seen people in very bad condit ions at t he hospit al,
if you don’t t ake care, it ’s over ( Lily) .
I t hink t hat , if t he child is born wit h t he virus, it has
lit t le chance of living ( Violet ) .
I know t hat aids kills, t hat HI V kills and t hat it causes
a lot of diseases and t hat , if you don’t prot ect yourself, if you go
out wit h a m an you’ll pass aids t o t he ot hers. I f you put it int o
your head, you’re gonna die fast er ( Hydrangea) .
H y d r a n g e a ’ s s t a t e m e n t r e v e a l s t h a t t h e
p r e se n ce o f HI V b r o u g h t t h e ce r t a i n t y o f d e a t h ,
an x iet y an d t h e f ear of d y in g , a p ossib ilit y t h at is
accent uat ed in v iew of t he possibilit y t hat t he child
will get infect ed and ill.
Despit e t he evolut ion in aids t reat m ent , which
increased pat ient s’ survival and t urned it int o a chronic
disease, in popu lar r epr esen t at ion s, t h e associat ion
b e t w e e n a i d s a n d d e a t h i s v e r y p r e s e n t . Th e
associat ion in f ect ed w om en est ab lish w it h d eat h is
m ainly m anifest ed in t he r ev elat ion of t he diagnosis.
La t e r, w h e n t h e y g e t i n c o n t a c t w i t h h e a l t h
professionals and ot her persons in t he sam e sit uat ion,
a sso ci a t ed w i t h t h e a b sen ce o f sy m p t o m s o f t h e
disease, t hey consider t hat deat h is not as im m ediat e
as t hey t hought . Thus, “ t he invisibilit y of t he disease
also allows for t he invisibilit y of deat h it self”( 11).
Religiou s belief
Th e r ealit y of w om en liv in g in less f av or ed
sit uat ions is m ar k ed by a const ant fight for sur v iv al,
oft en m obilizing feelings of at t achm ent t o a r eligious
b e l i e f . Th i s a t t a c h m e n t c a n a l s o t u r n i n t o a n
alt er nat iv e t o cope w it h t he disease:
I handed it over t o God, he is t he one who’s going t o
give m e t his answer ( Cam om ille) .
...it ’s his healt h t hat is at st ake, even if I knew t hat he
was negat ive, but we have t o do our part , it ’s like Jesus says, do
your part and I will help you ( Marigold) .
Re l i g i o n a p p e a r s a s a f o r m o f s u p p o r t ,
represent ing an im port ant em ot ional support net work.
Fait h in t he divine is one way of explaining t he world,
o f o v e r c o m i n g a n d b e a r i n g d a i l y e x i s t e n c e ,
associat ing it wit h hope. Fait h in cure is based on t he
belief in a super ior pow er t hat giv es t hem hope, as
obser v ed in t he follow ing st at em ent s:
...w ho know s furt her ahead, God will prepare a drug
t hat cures... ( Daisy) .
I kept going t o t hat church in t he cat hedral for 9 m ont hs
and I asked “ oh m y God, don’t do t hat t o m y child” ; we cannot
lose hope, we have to take the boy and believe in God ( Hydrangea) .
Religion is a sy st em of sy m bols t hat act s t o
est ab lish p ow er f u l an d lon g - last in g in t en t ion s an d
m ot iv at ion s in h u m an b ein g s( 1 2 ). I n a w ay, w om en
benefit from t heir religious belief, t o t he ext ent t hat it
t ur ns int o a w ay of coping and r elief fr om suffer ing
and anguish, im posed by a disease t hat is per ceiv ed
as v er y sev er e.
Per ceiv ed Ben ef it s
Pe r ce p t i o n s a b o u t su sce p t i b i l i t y a n d t h e
sever it y of t he disease can m ot ivat e people t o adopt
par t icular conduct s, alt hough it does not define w hat
course of act ion will be t aken. What guides act ion are
per son al belief s r elat ed t o t h e ef f icacy of av ailable
alt er nat iv es t o decr ease t he t hr eat of t he disease or
t he per ceiv ed benefit s of t ak ing a cer t ain act ions( 4 ).
Th e cat egor ies t h at em er ged am on g t h ese ben ef it s
Gr ow ing up healt hy
All par t icipan t s’ ch ildr en w er e follow ed at a
specialized out pat ient clinic, alt hough t w o w om en did
n o t r ecei v e p r en at al car e. Wh en ask ed ab o u t t h e
b e n e f i t s t h e c h i l d w o u l d r e c e i v e b y t a k i n g t h e
t r eat m en t , t h ey r epor t ed in dif fer en t w ay s t h at t h e
great est benefit was t he chance of not being infect ed
by HI V and leading a healt hy life.
The possibilit y t hat he will not develop t he disease, so
t hat he w on’t have HI V ( Lily) .
I wish he would not cat ch it , I could not j eopardize his
life by passing t he virus on t o him ( Violet ) .
For her t o grow up healt hy, not t o have anyt hing! ( ...) I
t hink she will grow up, she will play, do everyt hing she want s t o,
you see. While I ’m here working, I want t o give her everyt hing
she w ant , everyt hing possible and t hat ’s it ( Marguerit e) .
Th e p ossib ilit y of g r ow in g u p , p lay in g an d
leading a healt hy life st im ulat es t he m ot hers t o follow
t h e h eal t h p r o f essi o n al s’ o r i en t at i o n s, i n o r d er t o
decr ease t he chance of infect ion in t he child.
Follow - up at a specialized out pat ient clinic is
r e c o m m e n d e d b y t h e M i n i s t r y o f H e a l t h a s a n
im por t ant m easur e for new bor ns ex posed t o v er t ical
t r an sm ission , as it det er m in es w h at act ion s w ill be
t ak en dur ing t his per iod( 1). These childr en should be
sy st em at ically follow ed, ev en aft er t h e con fir m at ion
of negat ive serology, as t hey were exposed t o possibly
car cin ogen ic agen t s.
Not being like m e
Knowing t hat you have a chronic disease, t hat
y ou w ill n eed m ed ical car e, t ak in g m ed icat ion an d
follow ing som e rest rict ions for t he rest of your life is
not a calm sit uat ion.
At least I knew t hat she wouldn’t be like m e, having t o
go to the doctor, having to take m edication, that was a relief (Rose).
I prayed to God so m uch to get a negative result because
t hat w ould w eigh on us, know ing t hat he caught it from us, he’s
a child who has no idea ( Hydrangea) .
Wom en w h o alr ead y liv e w it h a r ou t in e of
frequent m edical appoint m ent , m edicat ion t reat m ent s
and occasionally w it h oppor t unist ic diseases in t heir
lives do not want t heir child t o have t he sam e. I n t he
case of aids, t hat is st rengt hened by t he fact t hat t his
disease st ill possesses st igm at izing char act er ist ics for
societ y. The st igm a is a social const ruct ion legit im ized
b y t h e ot h er p er son ’s l ook , w h i ch sy m b ol i cal l y or
concret ely rest rict s t he t errit ories of norm alit y. I f som e
per sons m ov e bey ond t he line t hat separ at es t hese
norm s, t his represent s a deviat ion t hat is accom panied
by accusat ion, isolat ion and ev en punishm ent( 13).
Wit h respect t o HI V/ aids pat ient s, we have t o
consider t he way societ y referred t o t hem at t he st art
of t h e ep id em ic: as v ict im s, in t h e case of p eop le
infect ed by blood product s; or as guilt y, in t he case of
h om osex u als, pr ost it u t es an d dr u gs u ser s. Seen as
prom iscuous, t hey were charged wit h t he responsibilit y
for t he infect ion. Despit e changes in t he t raj ect ory of
t he epidem ic, nowadays, st igm a and prej udice are st ill
fears in infect ed individuals’ daily life.
Th e b e n e f i t t h a t t r e a t m e n t w i l l p e r m i t a
d e cr e a se d p o ssi b i l i t y o f i n f e ct i o n b y H I V, st i l l a
st igm at izing disease, becom es an im por t ant fact or in
t r eat m en t adh er en ce.
Per ceiv ed Bar r ier s
People can believe in t he efficacy of a cert ain
act ion t o reduce t he t hreat of t he disease and, at t he
sam e t im e, can per ceiv e t his act ion as inconv enient ,
cost ly, dangerous in t erm s of negat iv e side effect s or
iat r ogenic r esult s, unpleasant , painful, uncom for t able
or t im e- consum ing. These negat ive aspect s of healt h
a c t i o n s o r p e r c e p t i o n o f b a r r i e r s c a n a c t a s
i m p e d i m e n t s f o r t h e a d o p t i o n o f r e c o m m e n d e d
b e h a v i o r s a n d c a n c r e a t e c o n f l i c t s i n d e c i s i o n
m aking( 4). I n t his dim ension, we ident ified t he following
cat egor ies: disbelief in HI V, financial difficult ies, not
b r east f eed in g .
Disbelief in HI V
On e i m p o r t a n t a s p e c t t h a t n e e d s t o b e
d i scu sse d a n d t h a t ca n j e o p a r d i ze t h e m a t e r n a l
ad h er en ce p r o cess, t h u s co n st i t u t i n g a b ar r i er, i s
disbelief in HI V. When t he infect ed w om an does not
m anage t o ack now ledge t hat her HI V posit iv e st at us
can ent ail ser ious consequences for her self and her
child, she does not t ak e any car e, neit her of her self
nor t he child. We consider t his disbelief in t he exist ence
o f t h e d i se a se a s a b a r r i e r t h a t st o p s h e r f r o m
r e a l i zi n g h e r ch i l d ’ s a n d h e r o w n f o l l o w - u p . On e
ex am ple is t h e st at em en t of Tu lip, w h o is illit erat e,
has 13 children, is pregnant of her 14t h and has never
r eceiv ed pr en at al car e:
I have never seen anyone wit h aids. Nobody believes I
have it , neit her do I , so t hat ’s it . I t ake her t o Clínicas because
wat er and was hospit alized at t he I CU of t he Sant a Casa Hospit al
for a m ont h; t hen t hey t old m e t o t ake her t o hospit al and I did. I
have never t aken t he ot her kids because t hey don’t have anyt hing,
t hey were born well, t hey’re all st rong, t hey don’t even need
drugs ( Tulip) .
This st at em ent ex poses a sit uat ion in w hich
disbelief is associat ed wit h illit eracy and t he life cont ext
t h is w om an is in ser t ed in . A sign if ican t par t of t h e
p o p u l a t i o n o n l y t a k e s a c t i o n a f t e r t h e f a c t h a s
h a p p e n e d , t h a t i s, a f t e r t h e m a n i f e st a t i o n o f a
sym pt om . When pat ient s already now t hey carry HI V,
t he pr esence of t he v ir us does not hav e a concr et e
m eaning, as t her e ar e no appar ent sym pt om s yet t o
pr ov e it s ex ist ence.
Mak in g a decision in h ealt h is a pr ocess in
which t he individual m oves t hrough a series of st ages
during which int eract ions wit h people or event s in each
of t h ese st ages in f lu en ce t h at in div idu al in m ak in g
decisions about his/ her healt h( 14). A r elat ion of t r ust
needs t o be est ablished wit h people for t hem t o exert
som e influence on decision m ak ing.
Th e o b ser v at i o n o f t h e ai d s ep i d em i c h as
dem onst r at ed t hat indiv idual behav ior s play a cr ucial
role in HI V t ransm ission, and t hat st rat egies t o prevent
it s increase need t o t ake t his fact or int o considerat ion.
Financial difficult ies
Mo s t p a r t i c i p a n t s m e n t i o n e d f i n a n c i a l
d i f f i c u l t i e s t o c a r r y o u t a l l p r e v e n t i v e a c t i o n s ,
esp ecially in t er m s of at t en d in g p r en at al an d ch ild
ret urn appoint m ent s. Som et im es, t hese difficult ies can
r epr esent a bar r ier.
Everybody’s unem ployed here, t he bus is hard and I
don’t have a driver’s license; I oft en t ake her on foot . Som et im es
it rains, som et im es t he sun is t oo hot , but I do it ( Rose) .
The biggest difficult y is t he bus, som et im es you have
m oney and som et im es you don’t . I even lost a ret urn because I
didn’t have m oney ( Lily) .
Th e B r a z i l i a n p o p u l a t i o n d i s p l a y s g r e a t
socioecon om ic an d dem ogr aph ic dispar it ies. Hen ce,
t h ese dispar it ies ar e ex pect ed t o r eflect in t h e w ay
HI V spreads in t he populat ion. The st at em ent s above
ev i d en ce t h e so ci a l v u l n er a b i l i t y p eo p l e f r o m t h e
low est social lay er s ar e su b j ect t o. Th ese p eop le’s
h ig h v u ln er ab ilit y lev els in t er m s of socioecon om ic
com plex it y m ust be t ak en int o consider at ion in aids
prevent ion and cont rol program s( 15). Most part icipant s
r ef er r ed t o t h e im por t an ce of h elp f r om pu blic an d
philant hr opic inst it ut ions t o m aint ain t r eat m ent .
Th e i n e x i st e n ce o f i n t e r se ct o r a l i t y i n t h e
elabor at ion of Br azilian public policies j eopar dizes a
com pr eh en siv e r espon se t o t h e dou ble v u ln er abilit y
cr eat ed by t he super posit ion of pov er t y and aids( 16).
Pa r t i c i p a n t s ’ s t a t e m e n t s c o n f i r m t h e n e e d t o
im plem ent int er sect or al public policies, cov er ing not
only healt h and social care, but also educat ion, work,
cult ure and leisure for individuals wit h HI V, as a way
o f d e c r e a s i n g t h e f i n a n c i a l b a r r i e r s a f f e c t i n g
adher ence t o t r eat m ent .
Not br east feedin g
One aspect t o be t aken int o consider at ion is
t he suppr ession of br east feeding. Besides incr easing
t h e f i n a n ci a l p r o b l e m , t h i s i s a l so r e l a t e d t o t h e
em ot ional issue of m at er nal desir e.
That milk is expensive and we can’t breastfeed... (Begonia).
The m ilk helps a lot unt il t oday, but what I would really
like t o is t o breast feed him ... ( Pet unia) .
Br e a st f e e d i n g i s b r o a d l y d i sse m i n a t e d i n
publicit y cam paigns and healt h services as one of t he
a s p e c t s r e s p o n s i b l e f o r t h e h e a l t h y g r o w t h o f
n ew b o r n s a n d a l w a y s a sso ci a t ed w i t h p r o t ect i o n ,
great er bonding wit h t he m ot her and m at ernal love( 17).
For wom en wit h HI V who cannot breast feed, what oft en
r em ains is t he im age of failur e t o pr ot ect t he child.
Th e f ollow - u p of m ot h er s an d ch ild r en sh ou ld also
a d d r e ss t h i s a sp e ct . He a l t h p r o f e ssi o n a l s sh o u l d
su ppor t w om en t o “ decon st r u ct ” t h e desir e t o giv e
b r e a s t f e e d i n g , p r o v i d i n g i n f o r m a t i o n o n h o w t o
est ablish, m aint ain and st rengt hen t he affect ive bond
wit h t heir child and advising t hem on how t o prepare
and adm inist er t he infant form ula and on t he gradual
int r oduct ion of ot her foods.
FI NAL CONSI DERATI ONS
A d v a n c e s i n m e d i c a t i o n t h e r a p y, i n
com binat ion wit h ot her procedures, have considerably
r ed u ced m ot h er - ch ild t r an sm ission r at es. How ev er,
t o a c h i e v e t h e s e r e s u l t s , m o t h e r s h a v e t o b e
s t i m u l a t e d t o c a r r y o u t t h e p r o c e d u r e s h e a l t h
p r of ession als r ecom m en d .
The ident ificat ion of per cept ions about HI V/
aids infect ion r ev ealed nuances, w hich allow ed us t o
under st and t he beliefs t hat influence t his adher ence.
Som e asp ect s of m at er n al p er cep t ion s can
f a c t o r s f o r a d h e r e n c e , a n d a r e i n f l u e n c e d b y
educat ional lev el, social class, per sonalit y and liv ing
con t ex t .
D e t e r m i n i n g w h a t b e h a v i o r e a ch w o m a n
sh ou ld ad op t is on ly p ossib le w h en h er in d iv id u al
b e l i e f s a n d v a l u e s a r e t a k e n i n t o a c c o u n t .
I d en t i f y i n g an d u n d er st an d i n g h ow t h ey i n f l u en ce
t h e h a n d l i n g o f a h e a l t h p r o b l e m ca n d e t e r m i n e
h ealt h ser v ices’ act ion an d h ow t h is act ion sh ou ld
t ak e p l ace.
Care services for HI V/ aids pat ient s, especially
wom en and children exposed t o vert ical t ransm ission,
sh o u l d i m p l e m e n t p r o g r a m s t h a t g o b e y o n d t h e
biological dim ension and also consider client s’ v alues
an d cu lt u r al baggage, w it h a v iew t o m or e solidar y
and par t icipat iv e car e.
Recebido em : 22.7.2005 Aprovado em : 22.3.2006
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