FANTASI ES ABOUT PREGNANCY AND MOTHERHOOD REPORTED BY FERTI LE ADULT W OMEN
UNDER HEMODI ALYSI S I N THE BRAZI LI AN SOUTHEAST: A CLI NI CAL-QUALI TATI VE STUDY
1Rober t a de Car v alho Pint o Nazar io2 Egber t o Ribeir o Tur at o3
Nazar io RCP, Tu rat o ER. Fan t asies abou t pr egn an cy an d m ot h er h ood r epor t ed by fer t ile adu lt w om en u n der hem odialy sis in t he Brazilian sout heast : a clinical- qualit at iv e st udy. Rev Lat in am Enfer m agem 2007 j aneir o-fev er eir o; 1 5 ( 1 ) : 5 5 - 6 1 .
This art icle discusses hem odialysis experiences in t erm s of m eanings wom en at t ribut e t o several associat ed phenom ena. Renal insufficiency m ay present a progressive reduct ion in renal funct ion, in which t he kidneys are affect ed and becom e unable t o rem ove m et abolic m at erial from t he blood. Living wit h hem odialysis is associat ed t o im por t ant psychosocial adapt at ion m echanism s. This clinical- qualit at ive st udy w as per for m ed in t w o gener al hospit als’ nephrology service. The m et hod included purposive sam ple of nine wom en in hem odialysis and a sem i-direct ed int erview wit h open- ended quest ions was applied. Aft er cat egorizing int erviewees’ discourse, psychodynam ic appr oaches w er e used for int er pr et at ion. I t w as concluded t hat t he subj ect s ex per ienced differ ent degr ees of desir e t o get pr egnant and becom e m ot her s, now challenged by a lim it ing illness. Consider ing t he adopt ion m at t er, besides sym bolizing a generosit y act , it would represent a solut ion t o a deep individual dem and. Fant asize about adopt ion, even if it does not becom e realit y, m ay enhance t hese wom en’s self- est eem .
DESCRI PTORS: k idney failur e; r enal dialy sis; fant asy ; nur sing r esear ch; qualit at iv e r esear ch
FANTASÍ AS SOBRE EMBARAZO Y MATERNI DAD RELATADAS POR MUJERES ADULTAS
FÉRTI LES EN HEMODI ÁLI SI S, SUDESTE DE BRASI L: UN ESTUDI O CLÍ NI CO-CUALI TATI VO
Este artículo discute experiencias con hem odiálisis a través de significados que pacientes dieron a fenóm enos asociados. I nsuficiencia renal crónica present a reducción progresiva en la función renal. Cuando am bos riñones est án afect ados, hay incapacidad de rem over los m et abólicos de la sangre. Vivencias de hem odiálisis se asocian a im por t ant es m ecanism os de adapt ación psicosocial. Est e t r abaj o fue r ealizado en dos hospit ales gener ales y adopt ó un diseño clínico- cualit at ivo. La m uest ra fue int encional, con nueve m uj eres en hem odiálisis, y fue ut ilizada ent revist a sem idirigida. Después de la cat egorización de discursos, la int erpret ación fue realizada de acuerdo con el m arco psicodinám ico. Las m uj eres observadas present aban diversos grados de deseos de em barazarse y ser m adre, ahora desafiados por una enferm edad lim itante. Considerando el problem a de adopción, adem ás de sim bolizar un act o de generosidad, represent aría solución de una dem anda individual profunda. La fant asía de adopción en sí m ism a, aunque sin posibilidades de convert irse en realidad, aum ent aría la aut oest im a de esas m uj eres.
DESCRI PTORES: fallo r enal; diálisis r enal; fant asía; inv est igación en enfer m er ía; inv est igación cualit at iv a
FANTASI AS SOBRE GRAVI DEZ E MATERNI DADE RELATADAS POR MULHERES ADULTAS
FÉRTEI S EM HEMODI ÁLI SE, SUDESTE DO BRASI L: UM ESTUDO CLÍ NI CO-QUALI TATI VO
Est e ar t igo discut e exper iências com hem odiálise em t er m os dos significados que m ulher es t r ouxer am aos div er sos fenôm enos associados. A insuficiência r enal pode apr esent ar um a r edução pr ogr essiv a da função d os r in s, n a q u al am b os f icar am af et ad os e t or n ar am - se in cap azes d e r em ov er m et ab ólit os d o san g u e. A v iv ência da hem odiálise est á associada a im por t ant es m ecanism os psicossociais da adapt ação. Est e t r abalho adot ou um desenho clínico- qualit at iv o, r ealizado em ser v iços de nefr ologia de dois hospit ais ger ais. O m ét odo incluiu am ost r a pr oposit al de nove m ulher es em hem odiálise, aplicando ent r evist as sem idir igidas de per gunt as aber t as. Após cat egor ização das falas das ent r ev ist adas, a int er pr et ação ut ilizou abor dagens psicodinâm icas. Concluiu se que as m ulher es obser v adas v iv enciar am gr aus difer ent es de desej os de gr av idez e de t or nar em -se m ãe, agor a desafiadas por doença lim it ant e. Consider ando o pr oblem a da adoção, além de sim bolizar at o d e g en er osid ad e, r ep r esen t ar ia solu ção p ar a p r of u n d a d em an d a in d iv id u al. A p r óp r ia f an t asia d e ad oção, em bor a pudesse não se t or nar r ealidade, aum ent ar ia a aut o- est im a dest as m ulher es.
DESCRI TORES: falência r enal; diálise r enal; fant asia; pesquisa em enfer m agem ; pesquisa qualit at iv a
1
Paper ext ract ed from t he Scient ific I nit iat ion Program , St at e Universit y of Cam pinas, Facult y of Medical Sciences, São Paulo, Brazil, present ed at t he 56t h Brazilian Congress of Nursing, Oct 2004, Gram ado, RS, Brazil. “ Nurse Jane da Fonseca Proença” Award; 2 Nurse at t he Hospit al Casa de Saúde Cam pinas. Researcher at t he Laborat ory of Clinical- Qualit at ive Research, St at e Universit y of Cam pinas. E- m ail: rubi.rc@bol.com .br; 3 PhD, Professor, Facult y of Medical Sciences, Mem ber of t he Laborat ory of Clinical- Qualit at ive Research. St at e Universit y of Cam pinas, e- m ail: ert urat o@uol.com .br
I NTRODUCTORY QUESTI ONS
C
hronic kidney failure requires hem odialysis,su r g e r y a n d e v e n k i d n e y t r a n sp l a n t a t i o n . I t i s a
d isease d ef in ed as an ir r ev er sib le an d p r og r essiv e
reduct ion in renal funct ion in which bot h kidneys have
been dam aged an d t h ey becam e u n able t o r em ov e
t he m et abolic pr oduct s fr om t he blood and r egulat e
t h e b o d y ’ s el ect r o l y t e co m p o si t i o n a n d a ci d - b a se
b a l a n ce( 1 ). Acco r d i n g t o t h e Am e r i ca n So ci e t y o f
Nephrology ( ASN) , alm ost half a m illion of Am ericans
suffered from End- St age Renal Disease ( ESRD) , being
about 80% on dialysis or requiring a kidney t ransplant .
I t is est im at ed t hat sixt y t housand ESRD pat ient s die
each year in USA, consist ing t he nint h am ong t he t
en-t op cau ses of d eaen-t h . Mor e en-t h an 5 0 % paen-t ien en-t s w ien-t h
ES RD r e c e i v e d d i a l y s i s , b e i n g d i a b e t e s a n d
hy per t ension t he t w o m ain causes of r enal disease.
ASN em phasizes t hat dialysis is not a cure for
t his disease, as w ell as it s blood- filt er ing pr ocess is
laborious, expensive and it requires bot h a st rict diet ary
and lifest yle lim it at ions. I n epidem iological t erm s, ESRD
occurs m ore com m only in African- Am ericans, followed
b y Nat iv e Am er ican s, Asian Am er ican s an d, f in ally,
Cau casian s. To b et t er u n d er st an d t h e p eop le’s lif e
ex per ience on hem odialy sis is obligat or y t o consider
t h at t h is p r ocess r ep r esen t s t o b e con n ect ed in a
m achine, rem oving and filt ering his/ her blood, for t hree
or f ou r h ou r s a d ay, at least t h r ee t im es a w eek ,
spending m any years of life( 2).
A c c o r d i n g t o t h e A m e r i c a n N e p h r o l o g y
Nu r ses’ Associat ion ( ANNA) , t h e r ole of n eph r ology
nursing is bot h t o assess all kind of react ions of renal
d isease on in d iv id u als an d t o d iag n ose/ t r eat t h eir
r esp ect i v e r esp o n ses. Fr o m t h i s p er sp ect i v e, i t i s
necessary t o assist and help each individual t o achieve
an opt im um lev el of funct ioning, t hr ough pr ev ent ing
r en al disease or r eh abilit at in g t h e pat ien t . To r each
t hese aim s, pr act it ioner s should seek high st andar ds
of pat ient care t hat are cont inually updat ed. For ANNA,
r esear ch is essent ial for t he adv ancem ent of nur sing
sciences and so new concept s m ust be developed and
t e s t e d t o s u s t a i n t h e c o n t i n u e d g r o w t h a n d
i m p r ov em en t o f n ep h r o l o g y n u r si n g . Fi n al l y, t h ey
co n cl u d ed t h a t b o t h t h e t ea m ’ s a p p r o a ch t o w a r d
p a t i e n t c a r e a n d t o e m b r a c e i n t e r d i s c i p l i n a r y
com m u n icat ion ar e essen t ial t o t h e ach iev em en t of
t he highest at t ainable level of cost - effect ive and qualit y
pat ien t car e( 3 ). Accor din gly, a Brazilian st u dy aim ed
t o cont ribut e t o t he knowledge of t he nurse’s educat ive
act iv it y w it h ch r on ic r en al p at ien t s u n d er g oin g an
h em od ialy t ic t r eat m en t , p r ov id in g an im p r ov em en t
in t he pat ient ’s qualit y of life and using a m odel called
“ aw ar en ess edu cat ion ”.( 4 ).
I t is su pposed t h at t h er e ar e abou t 3 5 , 0 0 0
pat ient s wit h Chronic Kidney Failure nowadays in Brazil,
w h o ar e k ept in dialy sis pr ogr am s, bein g t h e gr eat
m aj or it y of t hem fem ales in fer t ile age. The dialy t ic
a n d m ed i ca m en t o u s t r ea t m en t f o r t h ese p a t i en t s
present ed a spect acular enhancem ent in t he last t w o
decades, ext ending consider able t heir life expect ancy
a n d i m p r o v i n g t h e i r q u a l i t y o f l i f e . S u c c e s s f u l
pregnancy becam e possible for t he fem ale group kept
i n ch r o n i c d i a l y t i c t h er a p y. Th e f r eq u en t cl i n i ca l
-obst et ric com plicat ions m ean low- risk for m ot hers but
high- risk for babies, even t hough fet al deat h is rare( 5).
I n sp it e of t h e t r eat m en t p r og r ess, u r em ic
w o m e n p r e se n t l o w r e p r o d u ct i v e ca p a ci t y, w h e n
com par ed w it h nor m al ones. This differ ence elapses
m ain ly fr om t h e pr esen ce of com m on abn or m alit ies
i n t h ese p a t i en t s, su ch a s: h o r m o n a l a l t er a t i o n s,
m enst r ual and ov ulat ion disor der s, dim inished sex ual
f u n ct ion an d r ed u ced f er t ilit y. All t h ese f act or s ar e
added t o t he risks aft er concept ion, including increase
o f b l o o d p r e s s u r e , a n e m i a , a n d i m m u n o l o g i c
alt er at ion s. Th eses con d it ion s cu lm in at e in a n on
-indicat ion of pr egnancy, t he so- k now n “ r est r ict ion t o
t he m ot herhood”, t herefore a pregnancy is considered
a very im port ant m at ernal- fet al risk for prognost ic of
n eph r opat h ic pat ien t s.
The r est r ict ion t o becom e pr egnant m ay be
under st ood in sev er al w ay s by nephr opat hic pat ient s
in fer t ile age w ho ar e under hem odialy sis t r eat m ent .
Fr e q u e n t l y, i t i s o b se r v e d t h a t , d e sp i t e o f b o t h
or ien t at ion s r eg ar d in g t h e con t r acep t ion an d r isk s,
w hich a pregnancy brings for t hese w om en, m any of
t h em b ecom e p r eg n an t . Th er ef or e, it su g g est s an
int er fer ence of em ot ional fact or s but t he aw ar eness
on risks, which can t hreat en t heir lives. However, t he
counseling on t he use of cont r acept iv e m et hods for
t h ese p at ien t s seem s in su f f icien t or in ad eq u at e, it
r e s u l t s i n m a n y c a s e s o f p r e g n a n c y d u r i n g t h e
hem odialysis t reat m ent , according t o t he lit erat ure( 6).
The m ot herhood becom es t hen an am bivalent
quest ion - consciously and unconsciously - in t hese
fert ile wom en’s life under dialyt ic t reat m ent . For t hem ,
t hinking on t his m at t er brings up feelings which, oft en,
ant agonize desir es and im posed m edical r est r ict ions
bet w een t h em selv es, r each in g deeply t h e m at er n al
cu l t u r e - a n d b e i n g p r e se n t i n g r e a t e r o r m i n o r
int ensit y in each w om an.
I n spit e of pregnancy risks on dialysis, it m ust
not be forgot t en t hat t here are wom en det erm ined t o
have children because of t heir fervent religious beliefs
t h at m ak e t h em b eliev e t h e d iv in it y p r ot ect s b ot h
t h e m se l v e s a n d t h e i r b a b i e s f r o m d a m a g e . I t i s
ca l cu l a t ed t h a t , ea ch y ea r, o n e i n 2 0 0 w o m en o f
ch ildbear in g age con ceiv e w h ile on dialy sis. Alm ost
h alf of t h em r esu lt in a su r v iv in g bab y, con sider in g
t h o s e p r e g n a n c i e s n o t o p t i o n a l l y i n t e r r u p t e d .
Obviously, t his sit uat ion should not generat e an et hical
quarrel wit h m em bers of t he healt h care t eam , m ainly
wit hin t hose who have opinion t hat a pregnancy would
be har m ful( 7).
PREMI SES AND OBJECTI VES
Th e p r esen t scien t if ic p r oj ect b elon g s t o a
Resear ch Line ent it led “ Clinical- Qualit at iv e St udies in
Healt h Field”, t hat raises pr oblem s r elat ed t o healt
h-d isease p r ocess, su ch as ex p er ien ceh-d b y p at ien t s,
r elat iv es or healt h pr ofessionals. I nside t his line, t he
hem odialysis issue offered a prior st udy t hat discussed
t h e r elat ion sh ip bet w een h ealt h pr of ession al t eam s
and renal pat ient s. The paper ext ract ed from t his first
proj ect concluded t hat pat ient s wished t hat t he healt h
care t eam could list en t o t heir concerns m ore carefully,
w h ich go bey on d ph y sical aspect s, con sider in g t h at
t he provided clinical care had focused on bot h pat ient s’
biological aspect s and m echanical pr ocedur es( 8 ).
Th er ef or e, t h e specif ic goal of t h is sequ en t i n v e s t i g a t i o n w a s b o t h k n o w i n g a n d d i s c u s s i n g
f an t asies, w h ich ad u lt w om en in f er t ile ag e, u n d er dialyt ic t reat m ent , hav e about an event ual pregnancy,
as w ell as ident ify ing and int er pr et ing psy chological
conflict s relat ive t o t he desire and a real possibilit y of
playing t he m at ernal role. Fant asy is here underst ood
as an im aginar y const r uct ion in w hich t he subj ect is
pr esent and t hat w ould r epr esent , in a w ay par t ially
defor m ed due t o defensiv e pr ocesses, t he fulfillm ent
o f a w i sh . Th e a u t h o r s st a r t e d d e p a r t e d f r o m a
pr esupposed idea t hat t he w om en ex per ience, abov e
all when m arked by t he biological phenom ena of being
in fer t ile age, desir es and ex pect at ions of pr egnancy
- consciously or not - m anifest in differ ent degr ees.
To w a r d t h i s a f f e ct i v e - e x i st e n t i a l co n d i t i o n , w h e n
underst ood as universal, being under a drast ic m edical
t r e a t m e n t w o u l d m e a n , f o r t h e p a t i e n t s, h a v i n g
f an t asies m or e p r esen t in m in d an d v er y p r ob ab ly
accom panied by a special, but not abnorm al anguish.
METHODOLOGI CAL RESOURCES
I f o n e w a n t s t o e x p l a i n sci e n t i f i ca l l y t h e
phenom ena r elat ed t o disor der s of ur inar y t r act , t his
is a m at t er f or r esear ch er s in clin ical n ep h r olog y,
hum an physiology or r enal hist opat hology. But if one
w ant s t o under st and w hat k idney disease m eans for
t he daily life of an renal pat ient , t hen it becom es an
i s s u e f o r q u a l i t a t i v e r e s e a r c h e r s , w h o c a n b e
p s y c h o l o g i s t s , p s y c h o a n a l y s t s o r o t h e r h u m a n
scien t ist s( 9 ). How ev er, it is m u ch ap p r op r iat ed t h at
h e a l t h p r o f e s s i o n a l s a d o p t q u a l i t a t i v e m e t h o d s
t h em sel v es. Nu r ses, f o r i n st an ce, b r i n g t h e g r eat
advant age of having, due t o t heir pract ice, an inherent
clinical and ex ist ent ial at t it ude, w hich w ill lead t hem
t o collect dat a r ichly and t o der iv at e new k now ledge
w it h high com pet ence.
On t he one hand, knowing what t he ill people
im agine about t heir illness conduct s t o a harm onious
nurse- patient relationship. On the other hand, it is always
highly indispensable t o know what t hings, in general,
m ean for people, because sym bolic m eanings have a crucial structuring function in the individuals’ life. Around of what t he t hings m ean for ones, t hey organize t heir
lives, including t he healt hcares of t hem selves. Besides,
it was taken into account that the core property of the
m eanings is it s always- present polysem y.
From t hese principles, in order t o achieve t he
pr oposed goals, t h is r esear ch elect ed t h e so- called
clinical- qualit at iv e m et hod, w hich definit ion is found
t o be delim it ed at t he healt h sciences’ m et hodology
l i t e r a t u r e( 1 0 ). Th i s m e t h o d i s u n d e r s t o o d a s a
par t icu lar izat ion an d a r ef in em en t f r om t h e gen er ic
q u a l i t a t i v e o n e s , a s d e v e l o p e d i n t o t h e h u m a n
sciences and it has been pr ov ed as being adequat e
for qualit at iv e r esear ches per for m ed in healt h field.
I t s m et hodological const r uct ion com pr ehends
open-ended quest ions, w hich seek s t o get a st r ong- w illed dept h for t he quest ions under inv est igat ion. For t his
sam ple, it w as looked int ent ionally for w om en, w hich
h a d b o t h i n f o r m a t i o n o n t h e f o cu sed m a t t er a n d
charact erist ics of good verbal expressiveness, in order
t o bring dat a, at least , for t he int ended reform ulat ion,
deflect ion, com plem ent at ion and/ or clarificat ion of t he
init ial hy pot heses( 12).
Th e f ollow in g in clu sion cr it er ia f or p at ien t
select ion had been est ablished: ( a) w om en in fer t ile
a g e u n d e r h e m o d i a l y si s t r e a t m e n t ; ( b ) m e d i ca l ,
em ot ional and int ellect ual condit ions t o be subm it t ed
t o a cl i n i cal - p sy ch o l o g i cal r esear ch i n t er v i ew ; ( c)
part icipat ion agreem ent according t o t he Term of Free
a n d I n f o r m e d Co n s e n t a p p r o v e d b y t h e Et h i c s
Com m it t ee of t h e in st it u t ion . Fin ally, som e cr it er ia
were considered non- excluding ones, such as: gender,
a g e , o r i g i n , co n j u g a l st a t u s, f a m i l y co m p o si t i o n ,
educat ional lev el, socioeconom ic st at us, and beliefs/
religion. However, t o deal properly wit h event ual bias,
t h e v a r i a t i o n s o f t h e s e d a t a w e r e t a k e n a t t h e
discu ssion sect ion .
Th e st u dy sam ple con sist ed of n in e w om en
i n h e m o d i a l y si s, w h i ch w a s cl o se d b y sa t u r a t i o n cr i t e r i o n. Th e se t o f t h e t r a n scr i b i n g i n t e r v i e w s, for m ing t he cor pus, w as subm it t ed t o t he qualit at iv e con t en t an aly sis: f r ee- f loat in g r eadin gs w er e m ade b y t h e a u t h o r s i n o r d e r t o w e l l a cq u a i n t a l l t h e
i n f o r m a t i v e m a t e r i a l . On c e t h e c a t e g o r i z a t i o n p r o c e d u r e w a s p e r f o r m e d a n d t h e t o p i c s w e r e discu ssed, t h e r esear ch er s ch ose t w o cat egor ies t o
pr esent in t his paper.
I t is known t hat t he qualit at ive analysis of a
set of int erviews does not allow defining it s cat egories
from frequencies of cert ain cit at ions neit her any t ype
o f i n f o r m a t i o n ( o r f r o m o t h e r m a t h e m a t i z a t i o n
r esou r ces) . Th e qu est ion s, w h ich gain t h e cat egor y
st at us, were t hose t hat reply consist ent ly t o t he init ial
o b j e c t i v e o r a n o t h e r o n e a s s u m e d d u r i n g t h e
f ieldw or k . Aft er t h e r er eadin gs, aim in g t h is w r it in g,
t he cat egories defined were t he following: ( 1) qualit y
of life in hem odialy sis, nor m alit y / nor m at iv it y, st igm a
a n d p r e g n a n c y a n d ( 2 ) i d e a s o f a d o p t i o n a s a
possibilit y of play ing t he m ot her hood r ole.
RESULTS AND DI SCUSSI ON
I n t erm s of research procedures in field, t he
first st age consist ed of t he cont act w it h t he direct ion
o f t h e I n t eg r a t ed Cen t er o f Nep h r o l o g y f r o m t h e
U N I CA M P, w h i c h a c q u i e s c e d i n t h e p r o j e c t
dev elopm en t in t h is ser v ice. Du e t o m et h odological
needs of new inform at ion collect ions, t he sam ple was
ex t en ded t o an ot h er cit y h ospit al, a par t n er of t h e
public healt h ser v ice, unt il t he dat a had r eached t he
sat u r at ion poin t . Th e in t er v iew s w er e m ade on t h e
r out ine dialy sis session day s, hav ing occur r ed befor e
o r d u r i n g t h e s e s s i o n s . Th e s a m e s p a c e o f t h e
h em o d i al y si s w ar d s w as u sed as a set t i n g t o t h e
psychological int erview s. I t w as aim ed, w it h t he help
of t he nur sing t eam , a st r at egy t hat guar ant eed t he
i n t e r v i e w e e ’ s p r i v a cy, f o r m i n g a n e m p a t h i c a n d
confident ial r elat ionship bet w een subj ect - pat ient and
r esear ch er - in t er v iew er.
Qualit y of life in hem odialy sis, nor m alit y / nor m at iv it y,
st igm a an d pr egn an cy
The int er v iew ees br ought gener ically sev er al
concept ions, which reflect ed relevant worries wit h bot h
alt erat ions and aggravat ion of t heir healt h condit ions.
The cent ral concern seem ed t o be t heir qualit y of life.
I t is very well known t hat t o receive a diagnosis of a
serious illness is a dist urber event able t o change life
course in m any aspect s. Thus, a com plicat ed life due
t o hem odialy sis, in pr inciple, is an “ ex t er nal” fact or
t hat would cont rol t he desires linked t o t he body, for
inst ance, t o becom e pregnant . Desire was underst ood
as a st rong feeling t hat used t o m ove t o t he at t ainm ent
of som et h in g t h at is w it h in t h e r each in r ealit y or
im aginat ion. I t m ay also conduct t o r upt ur e feelings
of indiv idual w elfar e, now car r ied by r ev olt and fear
for a nam eless som et hing.
“ Ah, for m e it was t he worst of t he world. I had no idea
what hem odialysis was. I t was despair for m e... Then, I not ed
t hat it was not like t his... I n t he beginning, I did not want t o
accept it , and aft er I had t o see t hat I did not have m ore... The
kidney had already st opped! ” ( Pat ient 01)
On it s t ur n, t he em ot ional adapt at ion occur s
in a slow and gradual form facing lim it at ions im posed
b y t h e i l l n e ss, so m e t i m e s r e a ch i n g r e si g n a t i o n ,
anot her t im es hav ing passed by indignat ion.
“ Ah... Now , I have m y hom e, and I have m y t hings t o
t ake care. I have m y son, t hanks god, who I got . I t was m y goal.
Every wom an has t he will of being a m ot her. So, for m e, having t o
do hem odialysis is difficult t o incase in m y life. People becom e
incapable of doing m any t hings, neit her t hey can t ake a t rip, nor
t hey can eat what ever t hey like, nor t o t hink of drinking liquids.”
D e s p i t e t h e o b j e c t i v e w o r s e n i n g t h e s e
wom en’s qualit y of life, it is im posed a discussion on
t he nor m alit y v er sus nor m at iv it y quest ion, since t he i n t er v i ew ees, co n t r ad i ct o r i l y, b el i ev ed t h ey h ad a
n o r m a l l i f e. Th er ef o r e, h ea l t h p r o f essi o n a l s m u st
con si d er t h e con cep t u al d i f f er en ces b et w een su ch
c o n d i t i o n s f o r t h c e r t a i n d i s e a s e s . Fr o m a
Ca n g u i l h e m i a n v i s i o n , d i s e a s e i s a m e d i c a l
abnorm alit y, but it can express a norm at ivit y t hat does
n o t co n si d er t h e n o so l o g i ca l en t i t y a s so m et h i n g
incom pat ible wit h norm al funct ioning of quot idian life.
I n t he light of m edicine’s epist em ology, healt h is m ore t han norm alit y; in sim ple t erm s, it is norm at ivit y( 13).
For healt h pr ofessionals’ t eam , chr onic r enal
failu r e is an abn or m alit y fr om t h e m edical- scien t ific
viewpoint , but t here is a psychosocial vit al force t hat
r esist s t o t h e d isease, accor d in g t o an est ab lish ed
n or m at iv it y. Th e r est r ict ion s im p osed b y t r eat m en t
were perceived as being m ult iple by t he subj ect s under
t h is st u d y, h ow ev er t h ese w om en con sid er ed t h at ,
alt hough ex per ienced t he lim it s of t heir fam iliar and
social act iv it ies, t heir liv es w er e pr act ically nor m al.
“ My life is good, I do t he housekeeping and I t ake care
of m y children... On t he days when I do not feel encouraged, I do
not hing. But on t hose days when I ( fell anim at ed) am livened up,
I work hard in m y t hings... Hem odialysis can m ake m e physically
bad, you know , but I am not lazy....” ( Pat ient 05) .
Par ad ox ically, a t r eat m en t f u ll of b ot h lif e
r e s t r i c t i o n s a n d i m p o s i t i o n s t o o b t a i n p o s i t i v e
o u t co m es o r, co n si d er i n g b et t er, t o a l l o w g r ea t er
s u r v i v a l ( c o n t i n u a n c e o f l i f e u n d e r s o a d v e r s e
condit ions) for t hese pat ient s, leads us t o reflect about
cer t ain st igm a, as a m ean in g f u l sociolog ical ev en t , for who subm it t hem selves t o such procedures. Being
sick is t o forge a new personal ident it y. I n t he social
dim ension, t here are illnesses t hat becom e an indelible
m ar k . Sin ce t h e An cien t Gr eek Cu lt u r e, w h ich h ad
apparent ly m any visual aids, t here has been t he t erm
st igm a t o allude t o bodily signs designed t o ex pose som et hing unusual and bad about t he m oral st at us of t he signifier( 14).
Th e si g n s w er e i n f l i ct ed o n t h e b o d y an d
ser v ed t o adv er t ise t h at t h e bear er w as a slav e, a
crim inal, or a t rait or: a st ained person in order t o be
a v o i d e d , e sp e ci a l l y i n p u b l i c p l a ce s. D u r i n g t h e
Christ ian t im es, however, t wo levels of m et aphor were
at t ached t o t he init ial m eaning: one w as r efer r ed t o
b o d i l y si g n s o f h o l y g r a ce t h a t t o o k t h e f o r m o f
er u p t i v e f l o w er s o n t h e sk i n ; a n o t h er o n e w a s a
m edical m ent ion t o t his religious reference, considered
as bodily signs of physical disorder. Nowadays, m any
st u d e n t s b e l i e v e d t h a t t h i s w o r d i s e m p l o y e d i n
som et h i n g l i k e t h e or i g i n al l i t er al sen se, b u t i t i s
ut ilized m or e t o t he disgr ace it self t han t o it s bodily
ev i d en ce. Besi d es, ch a n g es h a v e o ccu r r ed i n t h e
disgr ace t y pes t hat cause concer n. I n spit e of t hat ,
sociology r ecognizes t hat t her e is st ill lit t le effor t t o
ch ar act er ize t h e st r u ct u r al pr econ dit ion s of st igm a,
or even t o pr ovide a sat isfact or y definit ion of it .
I n t h e c a s e o f w o m e n “ m a r k e d ” b y
h e m o d i a l y s i s , b e y o n d t h e b o d i l y s t i g m a s - s i g n s
r esult ing fr om t he t r eat m ent , such as ar t er iov enous
fist ula, t her e is m ainly t he psy chosocial st igm a due
t o bein g people lim it ed in t ak in g a n or m al f am iliar,
p r o f e ssi o n a l o r so ci a l l i f e l i k e m a n y o t h e r s. Th e
pregnancy, in t his cont ext , m ay be perceived as doubly
st igm at izing due t o wound sym bolically, in cert ain way,
a st er eot y pe im posed by societ y, of being a healt hy
body w om an w ait ing for t he m ot her hood
“ When I st art ed doing hem odialysis, m y psychological
condit ions had been very puzzled. I wore only long sleeve blouses
due t o t he fist ula in m y arm . But I st art ed doing psychological
t reat m ent . One day, I int errupt ed t he psychot herapy and t old
m yself: I will live a com m on life.” ( Pat ient 02)
I d e a s o f a d o p t i o n a s a p o ssi b i l i t y o f p l a y i n g t h e
m ot h er h ood r ole
Chronic renal failure, it s rest rict ions and risks
bring conflict s t o nephropat hic wom en, relat ed t o bot h
m ot herhood and fem ininit y, in special t o pat ient s who
d id n ot h ad ch ild r en p r ev iou sly t o of t h eir d isease
diagnosis( 1 5 ). I n any case, t he am biguit y of feelings
and t hought s seem s t o becom e a psy chological r ule
for w ar d so disquiet ing illnesses.
“ I would like t o have children, but at t he sam e t im e I
would not like it . When I was a child, I used t o say I did not want
t o have t hem . So, I passed t hrough an age t hat I desired t o have
children. But t hen all t his happened. I t becam e a subj ect about
t hat I do not t hink anym ore and it does not worry m e.” ( Pat ient 02)
Fr om a p sy ch oan aly t ical v iew , m ot h er h ood
r e sp o n d s t o t h e h u m a n b e i n g ’ s d e si r e f o r g i v i n g
cont inuit y t o life, im m or t alizing t he ex ist ence of w ho
had bot h generat ed life and becom e capable t o m ake
a h ist or y( 1 6 ). Th e w om en u n d er h em od ialy sis, w h en
inquired on t he m eanings of being m ot her, reproduced
t he m ot herhood psychocult ural m odel in t heir speech.
“ To be a m ot her m ust be good, right ? I t hink it is t he
every wom an’s dream ... t o build a fam ily... t o feel quit e ideal
All indicat es t hat t her e has being an int ense sociocult ural and m oral pressure for a couple t o bear ch ild r en , est ab lish in g t h u s a f am iliar n u cleu s. Th e in t er v iew ees h ad f ou n d t h em selv es f acin g a social
pr essu r e, u n v eiled by m et aph or s, su ch as “ t o be a t r ee w it hout fr uit s” or a “ dr y t r ee”, w hich ar e som e depr eciat in g ex pr ession s for t h ose w h o, du e t o an y r eason , h ad n ot con st it u t ed a socially d et er m in ed
f a m i l i a r g r o u p . As i n ser t ed i n t h i s co n t ex t , so m e w o m en h a d i d ea l i zed t h e a d o p t i o n a s a co n cr et e possibilit y of h av in g a m ot h er h ood r ole in fact , bu t ex em pt fr om r isk s t o bot h, t hem selv es and childr en.
Ad op t ion , accor d in g t o t h e som e p at ien t s’ sight in dialyt ic t reat m ent , had st art ed t o be a relevant q u e st i o n i n t h e i r m i n d s. Th i s p o ssi b i l i t y, b e si d e s sy m b o l i zi n g a g e n e r o si t y a ct , w o u l d r e p r e se n t a
solut ion t ow ar d a per sonal psy chological dem and.
“ I have already t hought t hat , if I got m arry, I would
adopt a child. But I have already given up t he pregnancy it self
because of a risk t hat I run, t hat t he baby runs. I have dealt t his
subj ect wit h m y fam ily and I have already t alked about it wit h
t hem .” ( Pat ient 01)
I t w a s f o u n d , i n t h e s e s p e e c h e s , a n am bivalence of at t it udes due t o a st rong m ot herhood
d esir e, ev en so it d oes n ot r ev eal it self in a clear w ay. Co n t r a r y t h o u g h t s i m p l y i n a p sy ch o l o g i ca l conflict , in par t caused by t r eat m ent r eal lim it at ions. Thus, cogit at ing a child adopt ion m ight represent good
m ent al healt h condit ions. Fant asy adopt ion by it self, even t hough it does not m at erialize, seem s t o im prove t h e w o m e n ’ s s e l f - e s t e e m . Ps y c h o a n a l y t i c a l l y, im agining is at least par t ially r ew ar ding.
Fin ally, st r en gt h en in g t h e m ot h er h ood idea is per h aps alw ay s an act u al f eelin g, ev en t o t h ose p a t i e n t s w h o a l r e a d y w e r e m o t h e r s . Th e t r u e r est r ict ion t o a new pr egnancy seem s t o m ak e t hem
r ev iv e t he desir e of being m om once m or e
“ Ah, after starting to dialyze, the doctor said that I could
not... And I put in m y head that I could not... although I really would
not want another child, right? I t occurs that m y plan was to have a
couple of children and I had them . My husband and I did not have
plans of hav ing childr en any m or e. Then, it m eans t hat t he
hem odialysis did not affect m e too m uch, ok?” ( Patient 08) .
CONCLUSI ONS
Th e st u d i ed w o m en ex p er i en ced d i f f er en t degrees of desires of bot h pregnancy and t o becom e
m ot her again, clear ly or not in t heir consciousness, now challenged by t he real condit ion of a lim it ing chronic i l l n e ss, su ch a s t h e r e n a l f a i l u r e . Th i s a f f e ct i v e -ex ist ent ial sit uat ion m ay gener at e a special but not
necessarily abnorm al anguish, which m ust be held by healt h professional t eam . There is a recognized social pr essu r e for w om en in or der t o assu m e a m ot h er ’s r o l e i n o u r c u l t u r e . Be i n g i n s e r t e d i n t h i s
psychoant hropological cont ext , som e int erviewees had idealized t he adopt ion as a possibilit y of play ing t he m ot h er h ood, bu t ex em pt f r om clin ical r isk s t o bot h t hem selv es and childr en. Adopt ion, accor ding t o t he
som e pat ien t s’ sigh t , u n der dialy t ic t r eat m en t , h ad st art ed t o be a relevant quest ion in t heir t hought s. This possibilit y, besides sym bolizing a generosit y act , would r epr esent solut ion t ow ar d a deep indiv idual dem and.
Fant asy adopt ion by it self, alt hough it does not get t o per for m , m ay enhance t he w om en’s self- est eem .
ACKNOW LEDGMENTS
Our sincer e t hanks t o bot h t he pat ient s w ho collabor at ed alt r uist ically w it h t his inv est igat ion and
Telm a Finar di for pr oofr eading t his t ex t .
REFERENCES
1. US. Nat ional Libr ar y of Medicine [ hom epage on I nt er net ] . Bet h esda: Medical Su bj ect Headin gs. [ u pdat ed 3 1 Jan u ar y 2 0 0 5 ; ci t e d 0 4 Ju l y 2 0 0 5 ] . Av a i l a b l e f r o m URL: h t t p : / / w w w .nlm .nih.gov / m esh/ m eshhom e.ht m l.
2 . Am er i can Soci et y of Nep h r ol og y ( ASN) [ h om ep ag e on I n t er n et ] . Wash in gt on ( DC) : I m por t an t Fact s abou t Kidn ey Disease. [ updat ed 2005; cit ed 04 July 2005] . Available fr om U RL: h t t p : / / w w w . a s n - o n l i n e . o r g / f a c t s _ a n d _ s t a t i s t i c s / f a ct sSt a t i st i csOn e . a sp x .
3 . Am e r i ca n Ne p h r o l o g y Nu r se s’ Asso ci a t i o n ( ANNA) [ hom epage on I nt er net ] . Pit m an ( NJ) . Or ganizat ional Pr ofile. [ updat ed 2005; cit ed 04 July 2005] . Available from URL: ht t p: / / w w w . annanur se. or g/ cgi- bin/ WebObj ect s/ ANNANur se. w oa.
4. Cesar ino CB, Casagr ande LD. Pat ient s w it h chr onic r enal in su f f icien cy in h em odialy sis: n u r ses edu cat ion al act iv it ies. Rev Lat in o- am En f er m agem 1 9 9 8 Oct ober ; 6 ( 4 ) : 3 1 - 4 0 . 5. Rom ão JE Junior . Trat am ent o dialít ico de m ulheres grávidas. J Br as Nef r ol 2 0 0 1 ; 2 3 ( 1 ) : 4 9 - 5 4 .
6. Pascoal I F, Sabbaga E. Gest ação em m ulheres nefropat as. Rev Br as Hip er t en s 1 9 9 7 ; 4 ( 3 ) : 1 7 6 - 9 .
7. Ralph C. Pregnancy in a hem odialysis patient with an ethical/ cult ural challenge. CANNT J 2000 January- March; 10( 1) : 35- 8. 8. Cam pos CJG, Tu rat o ER. The healt h pr ofessionals’ t eam , t h e p a t i e n t w i t h r e n a l d i s e a s e i n h e m o d i a l y s i s , a n d i n t e r p e r s o n a l r e l a t i o n s . Re v B r a s En f e r m a g e n 2 0 0 3 Sep t em b er - Oct o b er ; 5 6 ( 5 ) : 5 0 8 - 1 2 .
1 0 . Tu rat o ER. Trat ado da m et odologia da pesquisa clínico-q u al i t at i v a: co n st r u ção t eó r i co - ep i st em o l ó g i ca, d i scu ssão com parada e aplicação nas áreas da saúde e hum anas. 2a ed.
Pet r ópolis ( RJ) : Vozes; 2 0 0 3 .
1 1 . Tu r a t o ER. . I n t r o d u ct i o n t o t h e cl i n i ca l - q u a l i t a t i v e r esear ch m et h odology : def in it ion an d m ain ch ar act er ist ics. Rev ist a Por t u g u esa d e Psicossom át ica 2 0 0 0 j an u ar y - j u n e; 2 ( 1 ) : 9 3 - 1 0 8 .
1 2 . Mer t on RK. On t h eor et ical sociolog y : f iv e essay s. Old and new. New York ( NY) : The Free Press; 1967.
1 3 . Can g u ilh em G. Th e Nor m al an d t h e Pat h olog ical. New Yor k : Zon e Book s; 1 9 9 1 .
14. Goffm an E. St igm a: not es on t he m anagem ent of spoiled ident it y. New Yor k : Touchst one; 1 9 8 6 .
15. Quayle J, Nascim ent o R, Kahhale S, Sabbaga E, Neder M, Zugaib M. Fant asias associadas à m at ernidade ent re m ulheres em t r at am ent o dialít ico: abor dagem qualit at iv a. Rev Ginecol Ob st et 1 9 9 8 ab r il; 9 ( 2 ) : 5 6 - 6 0 .
1 6 . Te i x e i r a A CP. A d o ç ã o : u m e s t u d o d a s m o t i v a ç õ e s in con scien t es. Lor en a ( SP) : St ilian o; 2 0 0 0 .
