SUFFERI NG EASES OVER TI ME: THE EXPERI ENCE OF FAMI LI ES I N THE CARE OF
CHI LDREN W I TH CONGENI TAL ANOMALI ES
1Cr ist iana Ar aúj o Guiller2 Giselle Dupas3 My r iam Apar ecida Mandet t a Pet t engill4
Guiller CA, Dupas G, Pet t engill MAM. Suffer ing eases ov er t im e: t he ex per ience of fam ilies in t he car e of children wit h congenit al anom alies. Rev Lat ino- am Enferm agem 2009 j ulho- agost o; 17( 4) : 495- 500.
This st udy aim ed t o underst and t he experience of caring for a child wit h a congenit al anom aly from t he fam ily’s perspect ive. Sym bolic I nt eract ionism and Grounded Theory w ere t he t heoret ical and m et hodological references, r espect iv ely . Dat a collect ion w as car r ied ou t w it h eigh t f am ilies w it h ch ildr en h av in g con gen it al an om alies t hr ough sem i- st r uct ur ed int er v iew s and par t icipat ing obser v at ion. Dat a analy sis r eached ax ial coding. Result s r evealed t w o phenom ena in t he ex per ience of fam ilies in deliver ing car e t o childr en w it h congenit al anom alies – Facing an init ially difficult experience and suffering eases over t im e. We concluded t hat t he underst anding of t his ex per ience suppor t s t he need t o r econsider t he nur sing car e pr ov ided t o fam ilies in t he car e of childr en w it h congenit al anom alies.
DESCRI PTORS: nur sing; congenit al abnor m alit ies; child; fam ily
EL SUFRI MI ENTO AMENI ZADO CON EL TI EMPO: LA EXPERI ENCI A DE LA FAMI LI A EN EL
CUI DADO DEL NI ÑO CON ANOMALÍ A CONGÉNI TA
El obj et iv o de est e est udio fue com pr ender el significado de la v iv encia del pr oceso de cuidar de niños con anom alía congénit a baj o la per spect iv a de la fam ilia. El I nt er accionism o Sim bólico y la Teor ía Fundam ent ada en los Dat os fuer on ut ilizados com o m ar cos t eór icos y m et odológicos, r espect iv am ent e. La r ecolección de los dat os fue realizada en ocho fam ilias de niños con anom alía congénit a, ut ilizándose la ent revist a sem iest ruct urada y la observación part icipant e. El análisis de los dat os fue conducido hast a la codificación axial. Com o result ados, fu er on ev iden ciados dos fen óm en os en la v iv en cia de la fam ilia al cu idar del n iñ o con an om alía con gén it a: d ep ar án d ose con u n a v iv en cia in icialm en t e d if ícil, y t en ien d o el su f r im ien t o am en izad o con el t iem p o. Se con clu y e q u e la com p r en sión d e esa v iv en cia of r ece su b sid ios im p or t an t es p ar a r ep en sar la asist en cia d e enfer m er ía a la fam ilia que cuida de niños con anom alía congénit a.
DESCRI PTORES: enfer m er ía; anom alías congénit as; niño; fam ilia
O SOFRI MENTO AMENI ZADO COM O TEMPO: A EXPERI ÊNCI A DA FAMÍ LI A NO CUI DADO
DA CRI ANÇA COM ANOMALI A CONGÊNI TA
O ob j et iv o d est e est u d o f oi com p r een d er o sig n if icad o d a v iv ên cia d o p r ocesso d e cu id ar d a cr ian ça com anom alia congên it a sob a per spect iv a da fam ília. O I nt er acion ism o Sim bólico e a Teor ia Fundam ent ada n os Dados f or am u t ilizados com o r ef er en ciais t eór ico e m et odológico, r espect iv am en t e. A colet a dos dados f oi r ealizada com oit o fam ílias de cr ianças com anom alia congênit a, ut ilizando- se a ent r ev ist a sem iest r ut ur ada e obser v ação par t icipan t e. A an álise dos dados foi con du zida at é à codificação ax ial. Com o r esu lt ados, for am ev i d en ci ad o s d o i s f en ô m en o s n a ex p er i ên ci a d a f am íl i a ao cu i d ar d a cr i an ça co m an o m al i a co n g ên i t a -depar ando- se com um a exper iência inicialm ent e difícil e t endo o sofr im ent o am enizado com o t em po. Conclui-se q u e a co m p r een são d essa v i v ên ci a o f er ece su b síd i o s i m p o r t an t es p ar a Conclui-se r ep en sar a assi st ên ci a d e enfer m agem à fam ília no cuidar da cr iança com anom alia congênit a.
DESCRI TORES: en fer m agem ; an or m alidades con gên it as; cr ian ça; fam ília
1Article extracted from Master’s Thesis; 2M.Sc. in Nursing, RN, Hospital São Paulo, Universidade Federal de São Paulo, Brazil, e-m ail: crisneonato@hotm ail.com ; 3Ph.D. in Nursing, Adj unct Professor, Universidade Federal de São Carlos, Brazil, e- m ail: [email protected]; 4Ph.D. in Nursing, Adj unct Professor,
Universidade Federal de São Paulo, Brazil, e- m ail: m pet t [email protected] .br.
I NTRODUCTI ON
I
n recent years nurses have searched for a t heoret ical basis t o bet t er deliver care t o children wit h co n g en i t al an o m al i es an d t h ei r f am i l i es t h r o u g h st udies t hat focus on underst anding t he m eaning of t h is ex per ien ce so as t o dev ise st r at egies of car e delivery t o m eet t heir needs( 1).One of t he st udied aspect s is relat ed t o t he difficult ies t hese fam ilies have t o face when t hey have t o care for children at hom e. Aut hors from one st udy( 2)
em phasize t hat orient at ion provided t o fam ilies before hospit al dischar ge does not t ak e int o account t heir needs. Consequent ly doubt s and/ or difficult ies relat ed t o t he car e t hey hav e t o pr ov ide at hom e em er ge af t er w ar d . Fr om t h is p er sp ect iv e, w e r ecom m en d gu idan ce t o be pr ov ided befor e an d aft er h ospit al disch ar ge so as t o r eassu r e par en t s an d m in im ize t heir anxiet y.
Th e i n st i t u t i o n w h e r e t h e a u t h o r h a s developed her act ivit ies is a cent ral point of reference i n d e l i v e r i n g ca r e t o n e w b o r n s w i t h co n g e n i t a l anom alies. How ever, t he par t icipat ion of fam ilies in t he car e nof childr en dur ing t heir hospit alizat ion is st ill lit t le encour aged because of t he facilit y ’s poor infrast ruct ure and lack of hum an resources t o m eet t he large dem and of pat ient s.
Healt h pr ofessionals hav e r ecent ly t r ied t o i n cl u d e f a m i l i e s i n t h e ca r e o f t h e i r ch i l d r e n , accom panying and helping t hem t o est ablish a m ore a f f e ct i v e co n n e ct i o n w i t h t h e i r ch i l d r e n . Th u s, professionals have st im ulat ed parent s t o t alk t o t heir babies, t ouch t hem , bring obj ect s from hom e t hat are significant t o children, and care for t heir hygiene and feed t hem . However, t he difficult y in int egrat ing t he fam ily w hen t he child is a new bor n is even gr eat er becau se t h e t eam m em ber s t h em selv es do n ot t o know how t o deal wit h t he sit uat ion.
Wh en p ar en t s r eceiv e t h e d iag n osis of a co n g e n i t a l a n o m a l y, t h e y g o t h r o u g h a v e r y predict able sequence of st ages regardless of t he real nat ure of t he condit ion. The init ial st age or im pact is o f sh o ck , a cco m p a n i e d b y cr y i n g , f e e l i n g o f helplessness and longing for escape; in t he second st age t here is disbelief and denial; sorrow and anxiet y e x p r e sse d t h r o u g h m u ch cr y i n g a n d a n g e r ch ar act er ize t h e t h ir d st age; t h en people ach iev e balance t hrough t he acknowledgm ent of t he condit ion and, at last , fam ilies reorganize t heir life, reint egrat ing and acknowledging t heir children( 3).
Our concern was t o underst and t he experience of caring for a child wit h a congenit al abnorm alit y for t h e f am ily af t er h osp it al d isch ar g e. Wh at ar e t h e d if f icu lt ies an d t o w h at ex t en t d oes t h e g u id an ce provided during hospit alizat ion help fam ilies t o care f o r t h e i r ch i l d r e n a t h o m e ? We b e l i e v e t h a t underst anding t his experience can provide resources t o bet t er support fam ilies undergoing t he process of car in g f or a ch ild w it h a con g en it al an om aly an d t herefore devise bet t er int ervent ion st rat egies. Hence, t his st udy aim ed t o underst and t he m eaning of caring for a child wit h congenit al anom aly at hom e from t he fam ily ’s per spect iv e.
METHOD
Sy m bolic int er act ionism v alues t hat people int er act , int er pr et , define and act in t heir daily life a cco r d i n g t o t h e m e a n i n g t h e y a t t r i b u t e t o t h e experienced sit uat ion( 4). The use of t he concept s and
cent ral ideas from sym bolic int eract ionism in t his st udy is pert inent because t he fam ily is com posed of act ors who play roles, act and int eract am ong t hem selves, w i t h t h e i r f u t u r e , t h e i r co m m u n i t y, w i t h t h e professionals who care for t hem and at t he sam e t im e evaluat e t he past and plan for t he fut ure.
Grounded t heory ( GT) is based on t he social sci en ces, esp eci a l l y t h e sy m b o l i c i n t er a ct i o n i sm t radit ion when it port rays societ y and it s act ions, t hen evaluat es which aspect s need t o be invest igat ed and how t o underst and social sit uat ions( 5). The em ploym ent
o f t h i s f r a m e w o r k p e r m i t t e d t h e r e se a r ch e r t o underst and aspect s of life as a subj ect ive life.
St udy Dev elopm ent
The st udy was conduct ed in an out pat ient s’ f a ci l i t y f o r n e w b o r n s w i t h co n g e n i t a l a n o m a l i e s hospit alized in t he Neonat al I nt ensive Care Unit ( NI CU) of a school hospit al.
Guidelines for research involving hum an beings est ablished by Resolut ion n° 196/ 96 of t he Nat ional Healt h Council were followed during dat a collect ion. Eight fam ilies totaling 12 fam ily m em bers, eight m others and four fathers participated in the study.
The researcher recorded and fully t ranscribed all t he int erviews. The following quest ion guided our st u d y : Wh at i s i t l i k e t o car e f or a ch i l d w i t h a co n g e n i t a l a n o m a l y a t h o m e ? Ot h e r q u e st i o n s em er ged du r in g in t er v iew s aim in g t o facilit at e t h e int er v iew ees’ v er balizat ion of t heir ex per ience and also t o br ing out t he point of v iew of ot her fam ily m em bers: what difficult ies have you faced in delivering care t o t his child at hom e? What elem ent s facilit at e it ? As t hey answered, new quest ions em erged so t o bet t er clarify t he aspect s of t heir experience.
Dat a w er e analyzed sim ult aneously w it h it s collect ion accor ding t o GT pr inciples. Because t his m et hod is a form of m anaging dat a, it is in const ant const ruct ion, which perm it s researchers t o st op at any lev el of dat a an aly sis an d r epor t t h eir f in din gs( 5 ).
Alt hough t his m et hod proposes t he developm ent of a t heoret ical m odel, t his st udy reached t he Axial Coding st ag e, w h i ch p er m i t t ed t h e i d en t i f i cat i o n o f t w o represent at ive phenom ena of t he m eaning of caring for a child wit h a congenit al anom aly.
RESULTS
Tw o com p lem en t ar y p h en om en a em er g ed from dat a analysis concerning t he fam ily’s experience of caring for a child wit h a congenit al anom aly. The first phenom enon Facing an init ially difficult experience
a n d t h e seco n d Su f f e r i n g e a se s o v e r t i m e w er e per m eat ed by an ev olu t ion ar y pr ocess m ar k ed by m om ent s of unbalance, physical and em ot ional st ress and m om ent s of st r engt h, coping and ov er com ing. Th e se p h e n o m e n a e m e r g e d f r o m t h e p a t i e n t s’ r econst r uct ions of t heir ex per iences, ex posing fact s from t he child’s birt h up t o t he current t im e.
Fa c i n g a n i n i t i a l l y d i f f i c u l t e x p e r i e n c e
represent s t he fam ily’s experience at t he beginning, when it had t o assum e t he child’s care at hom e. This phenom enon is revealed t hrough t he cat egories t hat follow .
Feelin g in secu r e t o deliv er car e r eveals t he family’s reactions at the moment it faces the child in need of special care at hom e. The fam ily expresses its fears and concerns in relation to care, reporting inexperience and lack of practice to perform care actions.
...as soon as he got hom e, I was scared t o deat h... of
get t ing him in m y lap...had t o wash his lit t le wounds… I was
afraid of hurt ing him …Gee! I had t o be very careful…had t o clean
his st it ches…ev er y t hing…( F4) .
The fam ily also reveals it keeps suffering wit h t h e sit u at ion. This suffer ing at t est s t o t he fact t hat
t hey perceive t hat t he child and t he whole fam ily have t o learn how t o live wit h t he lim it at ions im posed by t he sit uat ion, such as t he fear t hat t he child will have a r elap se an d w ill b e at r isk of d eat h , or w ill b e hospit alized again.
...t hey t old m e t hat if he has a t em perat ure, or any kind
of infect ion, it can harm t he valve. So I don’t want him t o be at t he
risk of being hospit alized again and everyt hing…( …) …m y m ain
concern is t hat he can’t get an infect ion, any infect ion…( F8) .
Suffer ing is coupled w it h t he fam ily h av in g an overload of daily dem ands, having t o live wit h t he child’s sit uat ion, w hich w or sens pr ev ious difficult ies su ch a s t h e l a ck o f f i n a n ci a l r e so u r ce s a n d t r anspor t at ion.
...I ’m running out of m oney t o get here… I st ill have
som e, but how it ’sn gonna be when I don’t have any? So what ? I f
I have no m oney, I ’ll have t o get it , because I have no car… I need
t he m oney for t ransport at ion. I f his t reat m ent is not over soon,
t hen, I guess it ’s going t o be an obst acle ( F1).
Fam ilies hav e t o face unexpect ed sit uat ions in t heir daily r out ine such as doubt s about special care dem anded by t heir children’s condit ions. These con d it ion s m ak e f eelin g s su ch as d iscom f or t an d disappoint m ent t o em er ge in t he fam ilies r egar ding t h e q u a l i t y o f ca r e t h e y r e ce i v e ; t h e y b e co m e
disappoint ed wit h t he care delivered.
...when m y child got out of t he I CU t hey t old m e not t o
change or t ake out t hat t hing he had on his back ( hydrocolloid
d r e ssi n g ) …So I d i d n ’ t ( …) On l y t h a t w h e n I g o t t o t h e
neurosurgeon… he said t hat I ’d had t o t ake t hat out when I got
hom e… t hat I should have washed it wit h soap, t hat I should
have cleaned it up so it ’d dry because it would never dry like
t hat …( F4) .
Aware t hat t he child is depending on it s care, t h e f am ily n eglect s it s ow n n eeds an d t r ies t o do anyt hing so t he child get s bet t er, prom ot ing t he child’s w ell being.
...I ’ll put anyt hing aside so I can t ake care of him , bot h
him ( husband) and dinner at hom e. There’s no obst acle for m e. I f
he needs m e, night and day… ( …) …I don’t have a car, but even so,
it doesn’t st op m e for com ing here. I ’ll get him here…I t ry t o be a
super m om …( F1) .
The fam ily feels m ore secure t o deliver care t o t he child as t hey acquir e m or e exper ience t o car e for t he child due t o it s effort s t o acquire knowledge and abilit y.
...t hen, wit h t im e you get used, you learn…( …) …For m e
it is get t ing easier as t im e goes by…it ’s get t ing easier…( …) …Now
I have m ore pract ice…( F7) .
As t he fam ily becom es m ore self- assured in delivering care t o t he child, it feels m ore bonded t o t h e ch ild an d ex p r esses all it s lov e w it h g r eat er int ensity. Caring for t he child at hom e becom es m ore p leasu r ab le, it accep t s it s con d it ion , w h ich f av or
st r engt hened affect iv e t ies t hr ough car e.
...for m e it ’s a pleasure get t ing hom e…see m y child
sm iling…happy …get t ing him in m y lap is a pleasur e, k issing
him …everyt hing…( …) …t o define it …it ’s a pleasure t o have m y child
t he way he is…( F3) .
Feeling com for t ed reveals t hat t he fam ily is st rengt hened by t he support provided by t he healt h t eam , t he ext ended fam ily, friends, and fait h in God. When t he fam ily is helped by people w ho w elcom e t hem wit h affect ion, it feels cared for.
...I also have God’s support …I guess t hat God com es
first , t hen t he fam ily, because I guess t hat everyt hing is in His
hands. So, if I w ant advice I have t o ask Him …Anyt hing m y
fam ily cannot supply, I guess t hat only God can, you know ( F5) .
Aft er feeling m ore capable t o act and having lessened init ial difficult ies, t he fam ily perm it s it self t o dream of a bet t er fut ure in which t he child has t he chance t o ov er com e lim it at ions im posed by his( er ) condit ion, believ ing in a new per spect iv e on life.
...right now , for m e, I ’ll be very proud of m y son when
h e g et s t o w al k , b ecau se I d o h av e f ai t h h e i s g o i n g t o
walk! ...( …) …m y goal is t o see him walking. I t doesn’t m at t er if he
lim ps…as long as he walks wit h his own legs…This is m y goal
and I have fait h I ’ll get t here…( F4) .
DI SCUSSI ON
The r esult s of t his st udy per m it init iat ing a p r ocess t o acq u ir e a b et t er u n d er st an d in g of t h e ex per ience of fam ilies w it h childr en w it h congenit al an om alies.
When a fam ily t akes hom e his/ her newborn child with a congenital anom aly, it experiences worries and anguish in face of the responsibility it now has to assum e. I nsecurity and doubt em erge during care, not only relat ed t o t he care dem anded by a special child but also the basic care required by any newborn child.
A st udy t hat focused on t he experience of a f am ily w it h a ch ild w h o d ep en d s on t ech n olog y( 6 )
pr esent s som e sim ilar it ies t o t his st udy. The fam ily assum ed t he responsibilit y of perform ing oft ent im es co m p l e x t e ch n i ca l p r o ce d u r e s, su ch a s t h e ad m i n i st r at i o n o f g ast r o st o m y f eed i n g at h o m e. Becau se t h e f am ily w as alr ead y f am iliar w it h t h e p r ocess in t h e h osp it al con t ex t , it f elt secu r e in per for m in g t h is pr ocedu r e at h om e, alt h ou gh it is com m on t o feel unprepared for such responsibilit y in t he beginning.
The t ransit ion from t he care provided at t he h osp it al t o t h e car e p r ov id ed at h om e b y f am ily m em bers has been a concept under st udy( 7). Hospit al
discharge represent s a sym bolic landm ark for parent s, t he beginning of a new phase in t heir lives when t hey b e co m e r e sp o n si b l e f o r a ch i l d w i t h sp e ci a l char act er ist ics. Par ent s feel unpr epar ed t o assum e t he responsibilit y of caring for t heir children and unsure t hey will be able t o cont inue t he t reat m ent init iat ed at t he hospit al. Thus, t here is a need t o prepare parent s t o care for t heir children at hom e.
Th e f a m i l y p er cei v es t h e l i m i t a t i o n s t h e disease im poses on t he child dur ing daily car e and suffers wit h t he prej udice t hey experience or perceive in societ y, acknowledging t hat a congenit al anom aly m an y t im es com p r om ises aest h et ic con cer n s an d m akes social int egrat ion difficult .
The parent s’ concern about how t he child is perceived by ot hers is one of t he cat egories revealed in a st u d y( 8 ) t h at f ocu ses on t h e m ean in g of t h e
experience of being a m other of a child with a congenital anom aly. I t represents the way a m other feels in view of the child’s insertion in the fam ily and social context. The evidence of anom aly is perceived by t he m ot her as a risk that the child will be rejected or discrim inated against by people. Thus, she directs her m other’s role and protective nature when she perceives her child is being rej ect ed because of his anom aly.
The overload of daily dem ands coupled wit h suffer ing fr om liv ing w it h a child’s condit ion m ak es fam ilies vulnerable. The great est difficult ies are of a financial nat ure and cause hardships when resources needed t o m eet t he child’s needs are not available.
A st udy of fam ilies of childr en w it h chr onic condit ions focuses on t he issue of fam ilies’ lack of financial resources t o deliver care. Financial resources becom e scarce over t im e, which m ight dest roy fam ily dynam ics and dist ance fam ily m em bers( 9).
e-giving role, since for t he societ y t hey play a cent ral r ole in t h e f am ily st r u ct u r e. Th is r ole m eet s t h e expect at ion m ot hers have for t hem selves and in order t o play such roles t hey creat e st rat egies: t hey work adequat e hour s t o m eet t heir childr en’s needs and act ivit ies, and also t o at t end t he household rout ine; t hey even give up t heir j obs t o m eet t he children’s dem ands( 10).
Coupled w it h difficult ies ex per ienced in it s daily life, t he fam ily becom es disappoint ed wit h t he car e deliv er ed in t he healt h sy st em . I t ex per iences sit uat ions t hat m ak e it feel har m ed by t he lack of edu cat ion on h ow t o deliv er car e t o it s ch ild. Th e f am ilies also r epor t t h at t h er e ar e div er gen ces in guidance provided by healt h professionals concerning t he child’s t reat m ent and care.
This disappoint m ent leads fam ilies t o m ist rust healt h services. I t is not sufficient t o sim ply offer t he ser v i ces; access t o su ch ser v i ces i n v o l v es o t h er a sp e ct s t h a t a r e si g n i f i ca n t t o m a i n t a i n u se r s’ a d h er en ce t o t h e ser v i ce su ch a s w a i t i n g t i m e, p h y sical d ist an ce f r om t h e ser v ice, av ailab ilit y of schedule, and t he for m at ion of t ies and t r ust w it h healt h professionals( 11).
Over time, the family feels more secure with its child and tries to care for him / her in the sam e way it would for a normal child as a way to cope and overcome the congenital anomaly. Although it cares for its child as if s/ h e w as a n or m al ch ild, it also u n der st an ds an d acknowledges that care has to be special and include the child’s delicate nature and peculiarities.
St udies( 6,8,12) focusing on chr onic condit ions
reveal t hat fam ilies seek norm al lives. They seek t o int egrat e t heir children wit h chronic diseases in t heir daily lives and in societ y so t hey are seen and t reat ed as n or m al ch ild r en . Par en t s alw ay s r ein f or ce t h e posit ive side, em phasizing t hat t he child has a healt hy appear an ce, st im u lat e t h eir abilit ies an d com par e t hem favorably wit h ot her children, so t hey are not labeled as sick, different or abnorm al.
Gradually, fam ilies overcom e barriers relat ed t o t h e ch ildr en ’s car e, w h ich gen er at e f eelin gs of closeness and sat isfact ion derived from t he act of care and fam ilies ent er a less t ense and m ore affect ionat e relat ionship wit h t heir children. The child is seen as a child in his/ her essence despit e t he anom aly, w hich encourages t he fam ily t o love it s child.
Th e ca r e i n cl u d e s t w o b a si c m e a n i n g s int rinsically linked. The first is relat ed t o an at t it ude of care, solicit ude and at t ent ion t oward t he ot her and t he second, concern and anxiet y because t he caregiver
f e e l s a f f e ct i v e l y i n v o l v e d a n d co n n e ct e d t o t h e ot her( 13).
A st udy( 14) about t he const ruct ion of parent ing
in t he experience of a m ot her of a child wit h cancer r ev eals t h at sh e con st r u ct s h er r ole based on t h e disease’s dem ands and becom es a m ot her of a child wit h cancer so as t o give m eaning t o her experience. She plays t he role she considers t o be hers t ow ard her son, which is a role t hat im proves over t im e.
We also per ceiv ed in t h is st u dy h ow h ar d par ent s w or k t o const r uct par ent ing ov er t im e. As t h e y se e k a b i l i t i e s t o ca r e f o r t h e i r ch i l d , t h e y ack now ledge em ot ions inv olv ed in t he pr ocess and realize how pleasurable caring for t heir child can be since t hey are able t o creat e bonds wit h t he child and experience love, pride and sat isfact ion.
The support provided by healt h professionals, fam ily m em ber s and fr iends st r engt hen t he fam ily and com fort t hem . This support helps t hem t o creat e i n cr e a si n g l y st r o n g e r t i e s w i t h t h e i r ch i l d a n d ov er com e difficult ies and suffer ing caused by t heir child’s healt h condit ion.
Anot her st udy( 15) focusing on t he experience
of fam ily’s int eract ion in t he cont ext of children’s healt h car e r ev eals t h at t h e in t er act ion b et w een h ealt h professionals and ot her fam ilies experiencing a sim ilar si t u a t i o n i s a n i m p o r t a n t a sp ect i n t h e f a m i l y ’ s ex p er ien ce. I t f eels w elcom ed w h en it sh ar es it s ex per ience w it h ot her fam ilies because ex changing and r eceiv ing at t ent ion, affect ion and fr iendship is im port ant for fam ilies during t his process.
An o t h er asp ect t h at co m f o r t s f am i l i es i s relat ed t o t heir fait h. Believing in God is a source of energy t hat st rengt hens t he fam ily t rying t o cope wit h t he sit uat ion of car ing for a child w it h a congenit al an om aly.
Th e r e a r e st u d i e s i n Br a zi l f o cu si n g o n spirit ualit y as synonym ous wit h hope and life, courage t o fight adversit ies and m inim ize suffering( 16- 17). A st udy about t he ex per ience of a fat her of a child w it h a congenit al anom aly reveals t hat he places in God t he cur e for his child and his ow n suffer ing( 18). I t is in
divine prot ect ion t hat he finds st rengt h t o overcom e his lim it at ions and face t he sit uat ion.
condit ions t o prot ect him / her in order t o grow happy, away from risks so t hat in t he fut ure, bot h fam ily and child can harvest t he fruit s plant ed wit h care and love.
W EAVI NG SOME REFLECTI ONS
Underst anding t he m eaning of t he experience o f f a m i l i e s ca r i n g f o r ch i l d r e n w i t h co n g e n i t a l a n o m a l i e s p e r m i t s g r a sp i n g a n d u n d e r st a n d i n g beh av ior s an d act ion s dev eloped in car e deliv er y. Th e se e v e n t s co n f e r m e a n i n g a n d p r o m o t e t r an sf or m at ion of t h e f am ily ’s per spect iv e of car e along it s t raj ect ory.
The difficult ies ex per ienced by t he st udied f am ilies in d eliv er in g car e f or t h eir ch ild r en w it h congenit al anom alies led t o t he r eflect ion about t o what ext ent nurses and ot her healt h professionals are at t ent ive t o t he needs of t his client ele. The fam ilies’ unpr epar edness is dir ect ly link ed t o t he ex per ience t hey hav e dur ing hospit alizat ion. Hence, t her e is a
need for int ervent ions planned and syst em at ized wit h a v iew t o p r om ot e t h e car e of ch ild r en w it h t h is condit ion at hom e so as t o m inim ize t he overload of dem ands and suffer ing fam ilies exper ience.
I n this perspective, we believe that the health t eam needs t o care for fam ilies not only during t heir children’s hospitalization at the neonatal ICU but also after hospital discharge so they receive support and are allowed to express their concerns in order to be better prepared to provide safe care for their children at home.
When we get close t o fam ilies of children wit h con g en it al an om alies w e h av e t h e op p or t u n it y t o r ef lect u pon t h e n u r sin g pr of ession ’s pr act ice an d acknow ledge t he need for t hese professionals t o be p r esen t , esp eci al l y i n t h e d ai l y r o u t i n e o f t h ese fam ilies, helping t hem t o cope, especially during t he adapt at ion phase, aiding t hem , pr ov iding adequat e inform at ion, suggest ing solut ions, facilit at ing access t o ser v ices t h ey n eed an d especially dev elopin g a pr ofessional and per sonal pr act ice of list ening and welcom ing t hem in m om ent s of crisis.
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