THE I NFLUENCE OF SOCI AL SUPPORT ON STRENGTHENI NG FAMI LI ES OF CHI LDREN
W I TH CHRONI C RENAL FAI LURE
Ér ica Sim pionat o de Paula1 Lu cila Cast an h eir a Nascim en t o2 Sem ir am is Melani Melo Rocha3 Paula ES, Nascim ent o LC, Rocha SMM. The influence of social support on st rengt hening fam ilies of children w it h chr onic r enal failur e. Rev Lat ino- am Enfer m agem 20 08 j ulho- agost o; 16 ( 4) : 6 92 - 9.
This paper pr esent s a st udy of t he fam ilies of childr en on per it oneal dialy sis, em phasizing t he ident ificat ion of social suppor t s and net w or ks t o st r engt hen int er vent ions aim ed at healt h pr om ot ion. Our discussion is locat ed in t he cont ext of inequalit ies bet w een developed and developing count r ies. For t his qualit at ive st udy, a cont ent an aly sis w as con du ct ed in or der t o elicit t h em es f r om t h e r aw dat a r elat ed t o t h e liv ed ex per ien ce of f ou r fam ilies t hat have a child w it h chr onic r enal failur e. The dat a w er e collect ed m ainly by in- dept h int er view s and t h e con st r u ct ion of g en og r am s an d ecom ap s. Th e id en t if icat ion an d ch ar act er izat ion of t h e f am ilies’ social suppor t s and net w or k s allow ed nur ses and fam ilies t o st r engt hen t heir coping m echanism s. Because fam ilies ar e dealing w it h sev er e econom ic pr oblem s, t hey need bet t er suppor t iv e pr ogr am s t o guide t heir offspr ing t o t heir full pot ent ial.
DESCRI PTORS: social suppor t ; childr en; hum an dev elopm ent ; fam ily nur sing; qualit at iv e; chr onic r enal failur e; h ealt h pr om ot ion ; fam ily
LA I N FLUEN CI A DEL APOYO SOCI AL PARA EL FORTALECI MI EN TO DE LAS FAMI LI AS DE
NI ÑOS CON I NSUFI CI ENCI A RENAL CRÓNI CA
Est e ar t ículo es un est udio sobr e las fam ilias de niños con diálisis per it oneal, que dest aca la ident ificación del ap oy o y las r ed es sociales p ar a f or t alecer in t er v en cion es d ir ig id as p ar a la p r om oción d e la salu d , en u n cont ex t o de desigualdad ent r e los países desar r ollados y en desar r ollo. Est udio cualit at iv o a t r av és del análisis de cont enido, con el obj et iv o de ident ificar t em as en base a dat os em pír icos de niños de cuat r o fam ilias con insuficiencia r enal. La r ecopilación de dat os r ealizada a t r av és de ent r ev ist as a pr ofundidad, const r ucción de genogr am as y ecom apas. La ident ificación y las car act er íst icas de las r edes sociales y de apoy o per m it ier on a los en f er m er os y f am ilias m ej or ar su u t ilización y f or t alecer las f or m as de en f r en t ar la sit u ación . Com o las fam ilias t enían gr av es pr oblem as económ icos, necesit aban de pr ogr am as de apoy o adecuados par a ay udar a sus hij os a desenv olv er se al m áx im o.
DESCRI PTORES: ap oy o social; n iñ os; d esar r ollo h u m an o; en f er m er ía d e la f am ilia; cu alit at iv o; f allo r en al cr ónico; pr om oción de la salud; fam ilia
A I N FLUÊN CI A DO APOI O SOCI AL PARA O FORTALECI MEN TO DE FAMÍ LI AS COM
CRI ANÇAS COM I NSUFI CI ÊNCI A RENAL CRÔNI CA
Est e ar t igo apr esent a um est udo sobr e fam ílias de cr ianças em diálise per it oneal, enfat izando a ident ificação de apoios e de r edes sociais par a for t alecer in t er v en ções qu e obj et iv am a pr om oção da saú de, n o con t ex t o d as d esig u ald ad es en t r e os p aíses d esen v olv id os e em d esen v olv im en t o. Par a est e est u d o q u alit at iv o, f oi r ealizada u m a an álise de con t eú do, a f im de iden t if icar t em as a par t ir dos dados em pír icos r elacion ados à ex per iên cia de qu at r o fam ílias qu e possu em u m a cr ian ça com in su ficiên cia r en al. Os dados for am colet ados p o r m ei o d e en t r ev i st a s em p r o f u n d i d a d e, co n st r u çã o d e g en o g r a m a s e eco m a p a s. A i d en t i f i ca çã o e a car act er ização dos apoios e r edes sociais per m it ir am às en fer m eir as e às fam ílias m elh or ar su a u t ilização e for t alecer m ecanism os de enfr ent am ent o. Em v ir t ude de fam ílias v iv er em em pr ecár ias condições econôm icas, elas n ecessit am d e p r og r am as ad eq u ad os d e ap oio, p ar a q u e p ossam con d u zir seu s d escen d en t es a u m pot en cial m áx im o.
DESCRI TORES: apoio social; cr ianças; desenvolvim ent o hum ano; enfer m agem fam iliar ; qualit at ivo; insuficiência r en al cr ôn ica; pr om oção da saú de; fam ília
1
RN, M.Sc. in Nur sing, e- m ail: er icasim [email protected] .br ; 2 Facult y, e- m ail: lucila@eer p.usp.br ; 3 Full Pr ofessor Ret ir ed, e- m ail: sm m r ocha@eer p.usp.br. Univer sit y of Sao Paulo at Ribeir ao Pr et o College of Nur sing, WHO Collabor at ing Cent er for Nur sing Resear ch Developm ent , Br azil.
I NTRODUCTI ON
I
t is not new t hat people w it h high incom e an d ed u cat ion lev els t en d t o b e h ealt h ier an d liv elonger t han people in less fav our able socioeconom ic
condit ions, nor t hat count ries w here incom es are m ore
evenly dist ribut ed have a healt hier populat ion in t erm s
of life expect ancy, qualit y of life and m ort alit y rat es( 1). The st at e of t he econom y has a t r em endous im pact
on healt h on m any levels, including psychological and
so ci al w el l - b ei n g . Ev en i n co u n t r i es w i t h a h i g h l y
unequal incom e dist r ibut ion such as Br azil, how ever,
s o u r c e s o f s o c i a l s u p p o r t a n d n e t w o r k s c a n b e
ident ified, and t hese can be healt h pr om ot ing, despit e
t he econom ic difficult ies of fam ilies living w it h chronic
diseases. Th is paper pr esen t s fin din gs fr om a st u dy
o f f a m i l i e s o f c h i l d r e n o n p e r i t o n e a l d i a l y s i s ,
em phasizing t he ident ificat ion of social suppor t s and
net w or k s t o st r engt hen int er v ent ions aim ed at healt h
p r o m o t i o n , i n t h e co n t ex t o f i n eq u al i t i es b et w een
d e v e l o p e d a n d d e v e l o p i n g co u n t r i e s. Th e i d e a o f
healt h prom ot ion involves st r engt hening individual and
co l l ect i v e cap aci t y t o d eal w i t h t h e m u l t i p l i ci t y o f
fact ors t hat condit ion healt h( 2). Pr om ot ion goes beyond apply ing t echniques and nor m s, r ecognizing t hat it is
not enough t o know how diseases funct ion and t o find
m e c h a n i s m s t o c o n t r o l t h e m . I t h a s t o d o w i t h
st rengt hening healt h by building a capacit y for choice,
u si n g k n o w l e d g e t o d i sce r n d i f f e r e n ce s b e t w e e n
e v e n t s( 2 ). Ca r e d e l i v e r y f o r ch i l d r e n w i t h ch r o n i c d iseases an d t h eir f am ilies is on e of t h e p r ior it ies
w it hin Brazilian public policy. Such car e dem ands br oad
a n d c o m p r e h e n s i v e k n o w l e d g e f o r h e a l t h
professionals t o perform t echnical and scient ific skills,
w it h a view t o under st anding fam ilies( 3). Chronic renal failur e is one of t he diseases t hat affect s childhood.
BACKGROUND
Th e diagn osis of ch r on ic r en al failu r e h as a
pr ofound im pact on childr en and t heir fam ilies, w it h
t h e pot en t ial f or im pair m en t of t h e ch ild’s ph y sical,
m ent al, and social developm ent( 4). Fam ilies w it h a child o n p e r i t o n ea l d i a l y si s h a v e t o a ssu m e si g n i f i ca n t
b u r d e n s o f ca r e , w h i ch ca n r e su l t i n st r e ss a n d
pot ent ial com plicat ions. This overload is heavier w hen
p e o p l e f a c e d i f f i c u l t y g e t t i n g a c c e s s t o a n d
com m unicat ing w it h healt h ser v ices. This difficult y is
one of t he charact erist ics of public healt h service users
in Br azil. Th e f am ily m em ber s cope w it h t h e st r ess
gener at ed by t he uncer t aint y by hav ing t o liv e each
day as it com es, finding posit ive m eaning, hoping for
a t r an sp lan t , an d d r aw in g on God ’s st r en g t h( 5 ). On t h e o t h e r h a n d , s o m e p a r e n t s r e p o r t i n c r e a s e d
cl o se n e ss w i t h i n t h e f a m i l y a n d g r e a t e r b o n d i n g
bet w een t he child and his/ her m ot her( 6). The delay in t he child’s gr ow t h is fam ily m em ber s’ m ost const ant
sou r ce of con cer n . Ev en w h en p at i en t s w i t h r en al
d isease r eceiv e ad eq u at e car e an d n u t r it ion , t h eir
h eig h t is st ill r ed u ced b ecau se of t h eir p oor r en al
f u n c t i o n a n d s t u n t e d g r o w t h . I n B r a z i l , t h i s i s
a g g r a v a t e d b y d i f f i cu l t i e s i n o b t a i n i n g a d e q u a t e
n u t r i t i o n a l a n d m e d i c a l s u p p o r t f o r t h e c h i l d ’ s
developm ent , due t o t he high cost of food and dr ugs( 7). Gr o w t h d e l a y s m a y a l s o e n t a i l p s y c h o l o g i c a l
disor der s( 8 ).
An o t h er f a ct o r t h a t sh o u l d b e h i g h l i g h t ed
w hen dist inguishing bet w een t he sit uat ion in Brazilian
an d w h at is d escr ib ed in in t er n at ion al lit er at u r e is
r elat ed t o t h e t r eat m en t con dit ion s of ch ildr en w it h
c h r o n i c r e n a l f a i l u r e . Pe r i t o n e a l d i a l y s i s i s t h e
pr efer red t r eat m ent for childr en and fam ilies w ho w ant
t o r em ain in d ep en d en t an d ch ild r en p r ef er r in g less
alim ent ar y r est r ict ions. I n som e sit uat ions, per it oneal
dialysis is cont raindicat ed. Fam ily m em bers’ inapt it ude
t o lear n an d p er f or m p r oced u r es elim in at es it as a
t r eat m ent opt ion( 9). Housing condit ions, like cleanliness and space, ar e ext r em ely im por t ant t o be included in
a per it oneal dialy sis pr ogr am( 10). I n som e count r ies, a new equipm ent called Perit oneal t eledialysis ( t elePD)
is being used. Lit erat ure present s som e facilit ies t hese
fam ilies have relat ed t o coping w it h dialysis t reat m ent
and w it h equipm ent s t o per for m t he dialysis at hom e.
Th e t elePD is a m od em - b ased com m u n icat ion lin k
bet w een t he pat ient s’ cy cler s and a com put er in t he
dialysis unit t hat allow s t he t r ansm ission and st or age
of a ser ies of au t om at ed p er it on eal d ialy sis ( APD)
t r eat m ent dat a. I t offer s secur it y and pr ovides a bet t er
qu alit y of life t o t h e fam ilies( 1 1 ). Th e “ Respit e Car e” pr ogr am has dem onst r at ed a decr ease in fam ily st r ess
and gr eat er appr oxim at ion bet w een t he healt h ser vice,
t h e f am ily an d t h e com m u n it y, t h u s in cr easin g t h e
childr en’s and fam ilies’ qualit y of life( 5). Few st udies r eveal t he im por t ance of assessing social support and
social net w or ks t o pr om ot e t he healt h of fam ilies w it h
childr en w it h chr onic r enal failur e. I n addit ion, t her e
is lit t le r esear ch ex plor ing fam ilies’ suppor t sy st em s
focusing on t he fam ilies in t heir com m unit y and local
w as t o ident ify social suppor t s of fam ilies of childr en
w it h chr onic r enal failur e r eceiv ing per it oneal dialy sis
by look ing at fam ilies’ healt h pr om ot ion.
CONCEPTUAL FRAMEW ORK
For t his qualit at ive st udy, a cont ent analy sis
w as con d u ct ed t o elicit t h em es f r om t h e r aw d at a
r elat ed t o t h e ex p er ien ces of f am ilies w h o h av e a
child w it h chr onic r enal failur e under going per it oneal
dialysis( 12). This t echnique began w it h t ranscribing t he dat a, including nonv er bal m essages, fr om audiot apes
t o har dcopy, and inv olved r eading and r er eading t he
t r anscr ipt ions. A set of code w or ds for t he ideas and
t h em es w a s o u t l i n ed . Th e d a t a w a s r ed u ced i n t o
cat egor ies by sim ilarit ies. Pat t erns t hat em er ged w er e
analysed and r efined t o for m br oad t hem es. The final
pr ocess w as t o ar t iculat e t he r esear ch dat a and t he
t h eor et ical f r am ew or k .
For t his st udy, w e used Bom ar ’s fam ily healt h
pr om ot ion concept( 13). Fam ily healt h pr om ot ion is t he “ p r o c e s s o f a c h i e v i n g f a m i l y w e l l - b e i n g i n t h e
biological, em ot ion al, ph y sical, an d spir it u al r ealm s
f or in div idu al m em ber s an d t h e f am ily u n it ”( 1 3 ). Th is st udy also t akes int o account t hat social suppor t and
net w orks are beneficial t o t he healt h of individuals in
a v ar iet y of w ay s. They ar e associat ed w it h r educed
m o r t a l i t y r a t e s, i m p r o v e d r e co v e r y f r o m se r i o u s
illness and incr easing use of pr event at ive healt h car e
pr act ices. Social n et w or k s ar e gen er ally u n der st ood
i n st r u ct u r a l t e r m s, d e scr i b e d a s l i n k i n g t o a n d
int eract ing w it h surrounding social inst it ut ions( 13). The s o c i a l n e t w o r k w a s a n a l y s e d t h r o u g h t h e
m or phological cat egor y, suppor t ed by t he visualizat ion
of t he ecom ap. The social net w or k w as ident ified by
t he follow ing cat egor ies: anchor, r eachabililt y, densit y
and r ange( 13).
METHODS
Recr u it m en t an d Sam ple
Par t icipant s w er e r ecr uit ed fr om a r egional univ er sit y hospit al t hat ser v ed as t he r efer r al cent er
for children and adolescent s w it h chronic diseases and
w as locat ed in t he int erior of t he St at e of Sao Paulo,
Br azil. Each child w ho t ook par t in t he st udy r eceived
init ial t reat m ent and all follow up care at t he recruit ing
hospit al. Four fam ilies of childr en w it h chr onic r enal
f a i l u r e u n d e r g o i n g p e r i t o n e a l d i a l y si s a g r e e d t o
par t icipat e in t he st udy, including four m ot her s, four
siblings, one grandm ot her, one uncle and t he four sick
ch i l d r e n , f o r a t o t a l o f 1 4 p a r t i ci p a n t s. Th e o n l y
cr it er ion t o include t he fam ily in t he st udy w as t hat
t h e sick ch ild h ad t o u n der go per it on eal dialy sis for
m or e t han one year. The childr en’s ages ranged fr om
f ou r t o t en y ear s old , an d t h er e w er e t w o f em ales
and t w o m ales. The four fam ilies w ho par t icipat ed in
t he st udy liv ed out side t he hospit al cit y ; all of t hem
w er e seen at l east si x t i m es o v er a p er i o d o f si x
m on t h s, w h ich w as t h e t im e n eed ed t o r each d at a
sat ur at ion. The cont ent of t he int er v iew s w as about
t he car e each fam ily m em ber pr ov ided t o t he child,
t he sit uat ions t hey faced and all kinds of infor m at ion
each of t hem w ould like t o shar e w it h t he int er view er.
I t w as n ecessar y t o u n d er st an d t h e f am ilies’ st or y,
asking fam ily m em ber s about t he cour se of t he child’s
illn ess, t h eir ex p ect at ion s an d social su p p or t s t h ey
r eceiv ed alon g t h eir illn ess ex per ien ce.
Set t in g
The dat a w er e collect ed in t w o places in t he
h o s p i t a l : a t t h e c l i n i c a l w a r d s , d u r i n g c h i l d r e n
hospit alizat ions and at t he out pat ient clinic. Anot her
locat ion w h er e d at a collect ion occu r r ed w as at t h e
ch ildr en ’s h om es.
Et h ical Con sid er at ion s
Ap p r o v a l w a s o b t a i n e d f r o m t h e h o sp i t a l
et hics com m it t ee. Each fam ily w as cont act ed by t he
first aut hor t o obt ain consent t o par t icipat e in t he st udy.
Prim arily, fam ilies w ere m et personally at t he hospit al
t o arrange a first m eet ing. All cont act ed children and
f a m i l y m e m b e r s a g r e e d t o p a r t i ci p a t e . I n f o r m e d
con sen t w as obt ain ed f r om all adu lt par t icipan t s as
w ell as t h ose ch ildr en w h o in dicat ed t h eir abilit y t o
a s s e n t , a n d a l l p a r t i c i p a n t s w e r e a s s u r e d o f
con f iden t ialit y. Th ey w er e assu r ed of t h eir r igh t s t o
r efuse t o answ er any quest ion or w it hdr aw fr om t he
st udy at any t im e.
Dat a Collect ion an d Dat a An aly sis
Dat a w er e collect ed fr om Novem ber 2004 t ill
Ap r i l 2 0 0 5 b y t h e f i r st a u t h o r a n d t w o r e se a r ch
st u d y aim , m et h od olog y, et h ical r eq u ir em en t s, an d
w or ked under t he super vision of t he r esear cher s. The
dat a w er e collect ed t h r ou gh in dept h in t er v iew an d
d e m o g r a p h i c d a t a f r o m t h e i r h o s p i t a l r e c o r d s .
Fur t her m or e, t oget her w it h fam ily m em ber s, w e built
a genogram and ecom ap for each fam ily, br oadening
t he inform at ion about t he fam ilies and t heir com m unit y
con t ex t s( 1 3 ). Th e in t er v iew s w er e r ecor ded an d f u lly t r a n s c r i b e d . Th e d a t a c o l l e c t o r s i n t e r v i e w e d a l l
par t icipan t s in Por t u gu ese, t h e n at ion al lan gu age of
Br azil. Analy sis w as conduct ed in Por t uguese but , for
t he English publicat ion, select ed t r anscr ipt segm ent s
w er e t r anslat ed by one of t he aut hor s.
FI NDI NGS
Fo u r f am i l i es co l l ab o r at ed w i t h o u r st u d y,
t ot allin g 1 4 par t icipan t s. Th e f am ilies ar e iden t if ied
by or dinal num ber s as Fam ily1, Fam ily2, Fam ily3 and
Fam ily 4 an d t h eir m em b er s b y t h eir p ar en t h ood in
r elat ion t o t he child, t oget her w it h t he fam ily num ber,
for ex am ple Mot her 1, Uncle1, Sist er 1.
Fam ily 1
Fam ily 1 con sist s of f iv e m em b er s: m ot h er,
uncle, t w o sist er s and t he sick child. Child1 is m ale,
four years old and his sist ers are younger. Mot her1 is
22 year s old and t he age of Uncle1 is 25. The fam ily
m em ber s hav e alw ay s w or k ed in t he r ur al ar ea. The
h ou seh old is su st ain ed b y t h e ch ild ’s g r an d p ar en t s
an d u n cles. Ch ild 1 d isp lay s seq u elae of m en in g it is,
h as com m u n icat ion difficu lt ies an d few m ot or sk ills.
Uncle1 accom panies t he child dur ing hospit alizat ions
and ret urns, helps his sist er t o t ake care of her ot her
daught er s and also per for m s t he child’s dialy sis.
Fam ily 2
Fam ily2 consist s of m ot her, child w it h CRI and
g r a n d m o t h e r. Ch i l d 2 i s f e m a l e , n i n e y e a r s o l d ,
co m m u n i ca t i v e a n d a d e d i ca t e d t h i r d - y e a r b a si c
educat ion st udent at a public school. Mot her 2 is a
32-year old college st udent and Gr andm ot her 2 is a r et ir ed
lady of 69 y ear s old. Fat her 2 has passed away, as a
c o n s e q u e n c e o f a d e e p d e p r e s s i o n a n d s u i c i d e
at t em pt , r esult ing fr om t he im pact of t he child’s healt h
condit ions w hen she w as born. Aft er t he failed suicide
at t em pt , Fat her 2 r em ained in a com a for seven year s
and t hen died.
Fam ily 3
Fam ily 3 has four m em ber s: fat her, m ot her,
child w it h CRI and brot her. Child3 is m ale, four years
o l d a n d v e r y a c t i v e d u r i n g t h e d a t a c o l l e c t i o n
m eet ings. He cont inued playing w it h his br ot her dur ing
t h e i n t er v i ew s a n d i n t er a ct ed l i t t l e w i t h u n k n o w n
p er so n s. Mo t h er 3 i s a 4 4 - y ear o l d h o u sew i f e an d
responsible for t he care of Child3 and t he ent ire fam ily.
Fat her 3 is 44 year s old and w or ks in a com pany as an
adm inist r at ive aid. Br ot her 3 is a 13- year old secondar y
educat ion st udent at a public school.
Fam ily 4
Fa m i l y 4 co n si st s o f si x m e m b e r s: f a t h e r,
m ot her, sick child, t w o br ot her s and one sist er. Child4
is t hr ee y ear s old and m ale. Fat her 4 is an alcoholic.
Fam ily 4 lives in a t w o- r oom house, pr ov ided b y t he
social service of t he com m unit y w here t hey live aft er
an assessm ent of socioeconom ic condit ions and healt h
needs caused by t he child’s chr onic condit ion. Child4
is quit e com m unicat ive, know s all dr ugs he t akes and
per it on eal dialy sis pr ocedu r es.
Acco r d i n g t o t h e f a m i l i es o f ch i l d r en w i t h
ch r on ic r en al f ailu r e u n der goin g per it on eal dialy sis,
social suppor t s w er e v er y m eaningful. The genogr am
and ecom ap helped t he r esear cher s t o visualize t hese
su p p or t s an d t h e social n et w or k . Th e f ir st su p p or t
ident ified in t he t est im onies w as em ot ional. Mot her 4
m en t ion ed t h e ex t en ded f am ily ’s con cer n abou t t h e
ch i l d a f t e r t h e d i a g n o si s o f ch r o n i c r e n a l f a i l u r e .
Mot her 3 dem onst rat ed her sat isfact ion w it h t he closer
pr esen ce of h er br ot h er du r in g som e w eek en ds an d
said t hat t his com for t ed her.
Oh m y! They [ ext ended fam ily] got ver y w or r ied, w er e
ver y suppor t ive and helped us a lot . They have alw ays been ver y
concerned about relat ives ( Mot her4) .
Wh en m y br ot h er com es, I lik e it ! We st ay h er e,
Sat ur day night , all day Sunday unt il he goes. This is t he w ay t o
escape a bit fr om t he pr oblem , isn’t it ? ( Mot her 3)
Th e ex t en d ed f am ily ap p ear ed as a sou r ce
o f em o t i o n al su p p o r t . Kn o w i n g t h ey can co u n t o n
r elat ives’ help w as a w ay of calm ing dow n and feeling
c o m f o r t e d . Th e g r a n d p a r e n t s w e r e f r e q u e n t l y
m ent ioned, as t hey dem onst r at ed t heir av ailabilit y t o
h elp w it h car e f or t h e ch ild . Besid es t h e r elat iv es,
ot her per sons w er e also m ent ioned, including fr iends
of healt hy siblings. Brot her3 t old t hat his school friends
him t o face t he pr oblem . He said: My fr iends.... They say
t hey pr ay for him [ Child3] ; it helps… t hey suppor t ed m e a lot …
( Br ot her 3). As a result of increased cont act , t he fam ily
felt secure and confident in care delivery t o t he child
an d r elat iv es feel r ew ar ded.
I nform at ional support is t he set of inform at ion
p r o f e s s i o n a l s g i v e t o t h e f a m i l i e s . Th i s s u p p o r t
r ev ealed t o be deficient , due t o infor m at ion absence
an d con f lict s. Th e st at em en t s b elow g iv e ex am p les
o f i n f o r m a t i o n c o n f l i c t s a n d o m i s s i o n . Th e f i r s t
illu st r at es t h e con t r adict or y in for m at ion pr ov ided by
d oct or s an d m en t ion ed b y Mot h er 3 . I n t h e secon d
ex am p le, Un cle1 ’s t est im on y ev id en ces t h at h ealt h
p r of ession als om it in f or m at ion n eed ed t o t ak e car e
of t he child.
Because t he doct or was once m aking a t alk t here [ at t he
out pat ient clinic] and she said t r ips w er e OK. [ The doct or said: ]
“ You t ake t he t hings t o have dialysis t her e” . The ot her doct or
didn’t advise it , t hough, so w e don’t know , do w e? ( Mot her 3)
I know t her e is som e st uff t o get fr om t he gover nm ent
for our child... but I don’t know w hat it is…. He hasn’t r eceived it
yet . I guess t hey [ healt h car e pr ofessionals] should t ell us…. We
need t his help…. ( Uncle1)
I n st r u m en t al su p p or t r ef er s t o t h e of f er in g
of m at erial and operat ional resources. Uncle1 show ed
how t he ex t ended fam ily has collabor at ed w it h car e
for t he child, helping t hem w it h food and m oney. I n
t he sam e fam ily, Mot her 1 m ent ioned t hat t he ext ended
fam ily sust ains household ex penses by w or k ing on a
t om at o plant at ion in t he r ur al ar ea:
They [ t he ex t ended fam ily] br ing food, m oney. For
exam ple, r ight now , I ’ll need t o phone t hem [ ext ended fam ily]
asking for som e of m y clot hes ( Uncle1)
My m ot her , m y fat her and m y t w o br ot her s all w or k on
far m s; so, t hey all do far m ing collect ing t om at oes. This is w her e
t he m aint enance com es fr om ….I t is not easy, is it ? ( Mot her 1)
Appr aisal suppor t r efer s t o all feedback and
affirm at ion received by relat ives or act ual result s from
t h e d e l i v e r e d c a r e . Th e m o t h e r s ’ t e s t i m o n i e s
dem onst r at ed t hat t heir child w as t he r eason for all
of t heir effort s and keeping him / her alive in t he fam ily
w as t h e b est r esu lt . We can p er ceiv e in Mot h er 1 ’s
d iscou r se t h at h er f ig h t f or h er son ’s lif e w as h er
r ew ar d. Mot her 2 r epor t ed t hat she w as pr oud of her
dau gh t er ’s in t ellect u al dev elopm en t :
We ar e st r uggling for our child’s life. That is good!
Wit h each exper ience w e feel st r onger ( Mot her 1) .
And that is how it was! And you see, today she is ten years
old…..she attends the third grade… she is very sm art! The teachers
say she is one of the sm artest students in the class! (Mother2).
Th e d at a also sh ow ed t h at su p p or t of f er ed
b y cl o se o n e s h e l p s f a m i l i e s t o f e e l se cu r e a n d
encour aged t o cont inue t ak ing car e of t heir child, in
t h e sear ch for st r at egies t o adapt t o t h e n ew liv in g
con dit ion . Th e in st it u t ion s t h at gav e su ppor t t o t h e
f am ilies w er e a st r on g poin t of con n ect ion bet w een
t he fam ily and societ y. Uncle1 ident ified t he com pany
t h at su p p lies t h e d ialy sis m ach in e as an im p or t an t
an ch or f or t h e ch ild’s car e, say in g t h at t h e dialy sis
m achine’s ex ist ence w as fundam ent al for t he child’s
l i f e . H e s h o w e d t h e i m p o r t a n c e o f t h e h o s p i t a l
inst it ut ion in financial help. Mot her2 revealed t hat she
found availabilit y in t he hospit al t o help her w it h her
dif f icu lt ies:
I t hink it w as t he best t hing t hey’ve ever done; if it
w asn’t for t he m achine ( dialysis) , I don’t know w hat it w ould be
of t his boy….I t hink t he biggest dr aw back is financial. But her e,
t he hospit al has helped a lot ! ( Uncle1) .
Oh no! Since we’ve been t here [ at hospit al] , every t im e
I needed, t hey’ve alw ays suppor t ed m e ( Mot her 2) .
The hospit al and t he public social ser v ice in
t he cit ies w er e im por t ant anchor s for t he fam ilies in
care for t he child. The fam ilies received support from
h o s p i t a l , r e l i g i o u s a n d e d u c a t i o n a l i n s t i t u t i o n s ;
com pan ies an d local gov er n m en t s, w h ich con st it u t e
t he anchor of t he social net w or k .
Reachabililt y is r elat ed t o t he fam ilies’ ease
t o h av e con t act w it h t h e av ailable r esou r ces. Som e
f a m i l i e s u s e k i n d e r g a r t e n s, sp e ci a l sc h o o l s, t h e
c o m p a n i e s w h e r e t h e y w o r k , l o c a l g o v e r n m e n t
r esources, m edicat ion and housing t o obt ain addit ional
r esou r ces t h at com p l em en t car e f or t h e ch i l d an d
pr om ot e t h e fam ily ’s h ealt h dir ect an d in dir ect ly. I n
Mot h er 1 ’s t est im on y, sh e in dicat ed h er son ’s special
s c h o o l a s a n e a s i l y a c c e s s i b l e r e s o u r c e t h a t i s
im por t ant t o t ake car e of t he child. Mot her 3 m ent ioned
t h a t t h e co m p a n y w h e r e Fa t h e r 3 w o r k s d o n a t e d
m at er ial t o facilit at e car e for t he child:
My m ot her used t o t ake him [ Child1] t o t he special
school and I w ould w or k in t he fields. I st ayed at her house. At
t he special school, he received every t ype of care, physiot herapy,
ever yt hing ( Mot her 1) .
Th ey su p p lied u s w it h t h e st an d [ f or t h e d ialy sis
bag] ...t hey also offer ed us ever yt hing w e m ight need in t hat
respect , t hat t hey can help. They provided t he physiological saline
st and, you know , also t he bag. They brought us t he locker for t he
boxes, you know ? So, in t hat r espect , t he fir m w her e w e w or k
alw ays helps! ( Mot her 3) .
Th e den sit y of t h e social n et w or k r ef er s t o
am on g f am ily m em b er s an d t h e in t er act ion am on g
suppor t - giv ing per sons. Mot her 3 r epor t ed t hat , aft er
a t alk w it h t he doct or, dur ing w hich he r evealed t he
ch i l d ’ s d i a g n o si s, Fa t h e r 3 w e n t i n t o d e p r e ssi o n .
Mot h er 3 su ggest ed par t icipat in g in a pr ay in g gr ou p
t o r eceiv e com for t :
I said t o him [ Mot her 3 t alking t o Fat her 3] : “ As you ar e
now , you can’t go on! ” [ depr essive st at e] ; t hen t he doct or called
us t her e and explained ever yt hing. Then, w e j oined a pr ayer
gr oup at chur ch, t hen, oh! Ever yt hing w as over . His depr ession
disappeared! ( Mot her3) .
For t his fam ily, t he praying group est ablished
a ver y significant link t hat pr ovided com for t and w
ell-being at a crit ical t im e, w hen t he gravit y of t he child’s
illn ess w as r ev ealed.
Th e r an g e i s p er cei v ed b y t h e n u m b er o f
con t act s t h e fam ily est ablish es w it h societ y. Healt h ,
educat ion and r eligious inst it ut ions possess a bet t er
infrast ruct ure t o support t he fam ilies. These w ere t he
m o s t m e n t i o n e d i n s t i t u t i o n s i n t h e r e l a t i v e s ’
t est im onies. Local gov er nm ent s w er e also m ent ioned
a s o f f er i n g t r a n sp o r t , h o u si n g a n d so m e m a t er i a l
r esour ces, as w ell as em ployer s and dialysis m at er ial
m an u f act u r er s.
Fam i l y m em b er s em p h asi zed t h e n eed f o r
in f or m at ion al su p p or t . I n f or m at ion is an im p or t an t
sour ce of suppor t because it allow s fam ily m em ber s
t o m ak e conscient ious choices and decisions. Healt h
pr ofession als w er e alw ay s issu in g in for m at ion abou t
h ow f am ily m em ber s sh ou ld act or ch ar gin g ear lier
r eq u est s. Th e t est i m o n i es r ev ea l ed t h a t r el a t i v es
com plained of few oppor t unit ies for a dialogue. When
t her e w as no dialogue, t he healt h t eam did not know
t he fam ily’s experiences in t he pr ocess of t aking car e
o f t h e ch i l d . Mo t h e r 4 co m p l a i n e d a b o u t h o w sh e
r eceiv ed infor m at ion fr om healt h pr ofessionals about
t h e per it on eal dialy sis h er son w ou ld st ar t . Sh e felt
int im idat ed by t he t hr eat of her son’s deat h.
But , t hey [ healt h car e pr ofessionals] didn’t t ell us.
They said t hey w er e going t o car e on a pr ocedur e, w hich w as t he
dialysis, but t hey didn’t explain w hat it w as. But t hey t old us
t hat even w it h t he pr ocedur e he [ t he child] m ight die, t hen and
even w it hout t he pr ocedur e he [ t he child] m ight die t oo. You
know , t hey leave us feeling like t hat ( Mot her 4) .
Th e dat a sh ow ed h ealt h car e pr of ession als’
lack of sensit iv it y and com m it m ent in com m unicat ing
w it h t he fam ily. According t o t he relat ives’ t est im onies,
p r o f e ssi o n a l s a v o i d e d g i v i n g f u r t h e r e x p l a n a t i o n s
about t r eat m ent , pr esupposing t hat par ent s w er e not
sufficient ly able t o under st and t he t her apeut ic plan.
Anot her concer n in t his st udy w as t o ident ify
c o m m u n i c a t i o n w i t h i n t h e f a m i l y. Am o n g f a m i l y
m em ber s, som e siblings k new t hat t he child w as ill,
but w er e unaw ar e of t he t r eat m ent and t he ser iousness
of t h e ch r on ic disease. I n on e fam ily, t h e sick ch ild
and his siblings m aint ained aggr essiv e dialogues, as
t h e h eal t h y si b l i n g s b l am ed t h e si ck ch i l d f o r t h e
difficult condit ions t he fam ily w as going t hr ough.
Ever yt hing is his fault [ Sist er 4 t alking about Child4] .
My m ot her says it isn’t , but , all t hat is happening is his fault . We
ar e living her e ‘cause of him ; our sit uat ion is like t his ‘cause of
him . I t is t oo difficult ! ( Sist er 4) .
He [ Br ot her 3] w on’t t alk, ‘cause he’s ver y quiet . You
know, you not ice t hat he also was shaken, you know? And we also
don’t keep com m ent ing t hings near him [ Br ot her 3] , w e don’t
com m ent a lot near him , you know ? ( Mot her3) .
A n o t h e r s i t u a t i o n m e n t i o n e d b y U n c l e 1
sh ow ed sm all t alk in t h e f am ily. Car egiv er s div ided
t h e v e r y w o r k - i n t e n s i v e d a i l y t a s k s , d u e t o
hospit alizat ions and car e for healt hy siblings, and do
not m anaged t o be t oget her w it h t hem t o shar e t heir
ex p er i en ces:
And t he rest of us, we’ll have t o t alk; m e and t he child’s
m um haven’t t alked yet . We get half det ached, som et im es she’s
t here [ at hom e] and I am here [ at t he hospit al] , it ’s always dashing
in and out . So, w e can’t t alk, you know . I t ’s hard t o t alk! ( Uncle1)
DI SCUSSI ON
Th e ex t en d ed f a m i l y h a s o f f er ed f i n a n ci a l
su p p or t an d h as m ad e av ailab le r esou r ces f or t h e
ch i l d ’ s ca r e, d ecr ea si n g t h e f a m i l y ’ s b u r d en . Th i s
suppor t is ext r em ely im por t ant for t he fam ily, as t hese
resources are essent ial t o t ake care of t he child and,
w it h ou t t h em , t h e f am ilies w ou ld n ot h av e m in im al
condit ions t o survive in daily life. The caregiver should
f eel en co u r ag ed an d st r en g t h en ed each d ay. Th i s
suppor t should be giv en t hr ough posit iv e asser t ions,
en cou r ag in g w or d s an d h u m an ized car e. Lit er at u r e
has show n t hat fam ilies need different kinds of social
su ppor t s: affect iv e, econ om ic an d, m ain ly, fr om t h e
t eam r esponsible for t r eat m ent , w hich r einfor ces t his
st udy( 14). Nurses need t o assess fam ilies t o recognize t heir needs and close part nerships w it h available social
su p p o r t s a n d n et w o r k s t o i m p l em en t t h e f a m i l y ’ s
h e a l t h p r o m o t i o n . Th e y a l so n e e d t o e n co u r a g e
f a m i l i e s t o u s e a n d e n h a n c e s u p p o r t n e t w o r k s .
Fu r t h er m or e, n u r ses sh ou ld r econ sider in v est igat in g
Pu b l i c p o l i c i e s , m a i n l y r e l a t e d t o t h e
a v a i l a b i l i t y o f b e n e f i t s f o r ch i l d r e n w i t h ch r o n i c
disease, should be infor m ed t o t he fam ily in a clear
w ay an d in d u e t im e. Or ien t at ion s can n eit h er b e
am biguous nor pr ov ok e confusion. I t is im por t ant for
t h e h ealt h t eam t o t ran sm it in f or m at ion coh er en t ly,
as it gives r ise t o t he need t o adopt cer t ain behaviour s.
The fam ily needs t o feel secure in com m unicat ion w it h
healt h pr ofessionals. The sender and r eceiv er of t he
m essag e sh o u l d k eep t h e co m m u n i cat i o n ch an n el
o p e n . H e a l t h p r o f e s s i o n a l s s h o u l d n o t m a k e
p r ecip it at ed or p r ej u d iced j u d g m en t s ab ou t f am ily
m em ber s’ abilit y t o under st and.
Lit er at u r e con f ir m s con f lict s, om ission s an d
m i su n d er st an d i n g s b et w een t h e f am i l y an d h eal t h
pr ofessionals, sim ilar t o dat a found in t his em pir ical
st u d y( 1 6 ). Rel at i v es ex p ect h eal t h p r o f essi o n al s t o sh ar e in f or m at ion f or t h e ch ild’s car e. Nu r ses w er e
indicat ed as t he pr ofessionals w ho dem onst r at e m or e
posit iv e at t it udes t o shar e car e( 17).
Chronic illness in a child creat es new dem ands
for fam ily m em ber s. Encour aging fam ily m em ber s t o
m u t u a l l y sh a r e t h e i r f e e l i n g s a l l o w s f o r e f f i ci e n t
com m u n icat ion , lead in g t o h ealt h y p r ob lem cop in g .
Nu r ses sh ou ld open u p ch an n els t o list en t o f am ily
m em ber s and t ake t heir t est im onies t o t he ot her t eam
m e m b e r s w h o d e l i v e r ca r e t o t h e ch i l d , su ch a s
p s y c h o l o g i s t s , s o c i a l w o r k e r s , n u t r i t i o n i s t s a n d
p h y si ci a n s. Co m m u n i ca t i o n sh o u l d b e f l u en t b o t h
bet w een t h e f am ily an d t h e t eam an d am on g t eam
m em ber s. Oft en par ent s can be left feeling dist r essed,
a n g r y, co n f u se d , a n d d e - v a l u e d a s a r e su l t o f a
com m unicat ion incident t hat healt h professionals have
bar ely r egist er ed because it was so ‘r out ine’. Not hing
a b o u t c o m m u n i c a t i o n i s r o u t i n e f o r p a r e n t s :
ev er y t h i n g w e say an d d o , o r d o n ’ t say o r d o , i s
sign if ican t . Th e com m u n icat ion sk ill is n ot acqu ir ed
t h r o u g h b o o k s o r r e a d i n g . I n st e a d , i t sh o u l d b e
pr act iced daily by healt h pr ofessionals( 18).
CONCLUSI ON
This r esear ch has point ed out t hat fam ilies of
ch ild r en w it h ch r on ic r en al f ailu r e n eed car e p lan s
t hat consider t he fam ily as a facilit at or of t he child’s
t h er ap eu t i c p r o cess. Per i t o n eal d i al y si s r eq u i r es a
process in w hich t he fam ily w ill adapt it self t o t he new
r o u t i n e . N u r s e s c a n h e l p b y m a k i n g g o o d
a s s e s s m e n t s , p a y i n g s p e c i a l a t t e n t i o n t o s o c i a l
suppor t and com m unicat ion. The fam ily ’s k now ledge
a b o u t t h e d i s e a s e a n d t r e a t m e n t f a c i l i t a t e s i t s
a d a p t a t i o n . Th i s s t u d y h i g h l i g h t s t h e n e e d f o r
in t er sect or ial an d m u lt ipr of ession al act ion by h ealt h
car e w or k er s, w it hin t he lar ger net w or k of t he social
sect or.
The ident ificat ion and char act er izat ion of t he
t y pes of suppor t allow ed bot h nur ses and fam ilies t o
i m p r o v e t h e i r u s e a n d t o s t r e n g t h e n c o p i n g
m e ch a n i sm s. Fa m i l i e s p r o v i d e m a n y o f t h e b a si c
r esou r ces people n eed t o be h ealt hy. Becau se t h ey
ar e dealing w it h sever e econom ic pr oblem s, t hey need
adequat e suppor t ive pr ogr am s t o guide t heir offspr ing
t o t h eir f u ll p ot en t ial. Gov er n m en t s an d t h e h ealt h
sect or should play a leading r ole, cr eat ing suppor t ive
polices for fam ilies.
ACKNOW LEDGES
We t hank t he fam ilies w ho part icipat ed in t his
r esear ch . We also t h an k Cam ila Cr ist in a Man t oan i,
Ca r o l i n a Ca m i l o Co r r ei a a n d Ma r i a El i sa Ma ch a d o
Cicillin i f or t h eir t ecn h ical su p p or t . Th is w or k w as
funded by gr ant s fr om Pr Reit or ia de Pesquisa e Pr
ó-Reit or ia d e Pós- Gr ad u ação d a Un iv er sid ad e d e São
Pau lo, Coor den ação de Aper f eiçoam en t o de Pessoal
d e Nív el Su p er ior ( CAPES) , Fu n d ação d e Am p ar o à
Pe sq u i sa d o Est a d o d e Sã o Pa u l o ( FAPESP) a n d
Con selh o Nacion al d e Desen v olv im en t o Cien t íf ico e
Tecn ológ ico ( CNPq ) .
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