CARE DELI VERY FOR THE CHI LD TO GROW UP DESPI TE THE PAI N:
THE FAMI LY’S EXPERI ENCE
1Lisabelle Mar iano Rossat o2 Mar gar et h An gelo3 Clov is Ar t ur Alm eida Silv a4
Rossat o LM, An g elo M, Silv a CAA. Car e d eliv er y f or t h e ch ild t o g r ow u p d esp it e t h e p ain : t h e f am ily ’s ex per ience. Rev Lat ino- am Enfer m agem 2 0 0 7 j ulho- agost o; 1 5 ( 4 ) : 5 5 6 - 6 2 .
This st udy aim ed t o underst and t he m eaning of t he experience of fam ilies having a child experiencing pain due t o Juv enile Rheum at oid Ar t hr it is and t o const r uct a t heor et ical m odel r epr esent ing t his ex per ience. Grounded Theory and Sym bolic I nt eract ionism were used as m et hodological fram ework and t heoret ical fram ework, r espect iv ely . Dat a w er e collect ed by sem ist r uct ur ed int er v iew s w it h 12 fam ilies. Dat a analy sis allow ed for t he const ruct ion of t he t heoret ical m odel Caring for t he child t o grow despit e t he pain, which describes an experience based on m ot ivat ional elem ent s: want ing t o see t he child wit hout pain and want ing t o see t he child live a norm al life, reviewing how t he fam ily lives t he t ransit ion in it s developm ent cycles, ret aking and int egrat ing t hem in t he fam ily dy nam ic w it h t he appear ance of t he disease and pain in t he child. This t heor et ical m odel pr ov ides a fr am ew or k for t eaching, r esear ch and car e, per m it t ing adv ances in t er m s of t heor et ical nur sing k now ledge.
DESCRI PTORS: fam ily ; child; ar t hr it is, j uv enile r heum at oid, pain
CUI DANDO PARA QUE EL NI ÑO CREZCA A PESAR DEL DOLOR:
LA EXPERI ENCI A DE LA FAMI LI A
Est e t rabaj o t uvo com o obj et ivos com prender el cot idiano de la fam ilia del niño que vivencia la sit uación de dolor consecuent e de la Ar t r it is Reum at oidea Juv enil y const r uir un m odelo t eór ico r epr esent at iv o de esa ex p er ien cia. La Teor ía Fu n d am en t ad a en los Dat os y el I n t er acion ism o Sim b ólico f u er on u t ilizad os com o referenciales m et odológico y t eórico, respect ivam ent e. Los dat os fueron obt enidos por int erm edio de ent revist as sem i- est r uct ur adas a 12 fam ilias. El análisis de los dat os per m it ió const r uir el m odelo t eór ico Cuidando par a qu e el n iñ o cr ezca a pesar del dolor , qu e descr ibe u n a ex per ien cia est r u ct u r ada en t or n o a los elem en t os m ot iv ador es: quer iendo v er el niño libr e del dolor y quer iendo v er el niño llev ar una v ida nor m al, r ev elando com o la fam ilia vivencia las t r ansiciones en sus ciclos de desar r ollo, int egr ándolos en la dinám ica fam iliar con la llegada de la enfer m edad y del dolor en el niño. Est e m odelo pr opor ciona un r efer encial que ay uda a la enseñanza, inv est igación y at ención, per m it iendo av anzar en el conocim ient o t eór ico en enfer m er ía.
DESCRI PTORES: fam ilia; niño; ar t r it is r eum at oide j uv enil; dolor
CUI DANDO PARA A CRI ANÇA CRESCER APESAR DA DOR: A EXPERI ÊNCI A DA FAMÍ LI A
Os obj et iv os desse est udo for am com pr eender o significado da ex per iência da fam ília da cr iança com dor decor r ent e de ar t r it e r eum at óide j uv enil e const r uir um m odelo t eór ico r epr esent at iv o dessa ex per iência. A Teoria Fundam ent ada nos Dados e o I nt eracionism o Sim bólico foram ut ilizados com o referencial m et odológico e t eór ico, r espect iv am ent e. For am r ealizadas 1 2 ent r ev ist as sem i- est r ut ur adas com fam ílias das cr ianças. A p ar t ir d a an álise d os d ad os, em er giu o m od elo t eór ico “ Cu id an d o p ar a a cr ian ça cr escer , ap esar d a d or ” , const it uído por elem ent os m ot iv acionais: quer endo v er a cr iança liv r e da dor e quer endo v er a cr iança lev ar um a vida nor m al, além de elem ent os int er venient es, r evelando com o a fam ília vivencia as t r ansições em seus ciclos de desenvolvim ent o, ret om ando- os e int egrando- os na sua dinâm ica com a chegada da doença e da dor na criança. Esse m odelo t eórico proporciona um referencial para as prát icas de ensino, pesquisa e assist ência, per m it indo av ançar em t er m os de conhecim ent o t eór ico par a a enfer m agem .
DESCRI TORES: fam ília; cr iança; ar t r it e r eum at óide j uv enil; dor
1
St udy ext ract ed from Doct oral Dissert at ion; 2 RN, PhD, Professor, e- m ail: rossat [email protected]; 3 RN, Full Professor, Universit y of São Paulo School of Nursing, Brazil; 4 MD, Pedro de Alcânt ara Children I nst it ut e, Universit y of São Paulo Medical School Hospit al das Clínicas, Brasil
I NTRODUCTI ON
F
o r t h e f a m i l y, t h e c h i l d ’s c h r o n i c p a i n represent s an im pact because it s m em bers experiencea series of feelings, such as despair, anxiet y, frust rat ion
an d im pot en ce in dealin g w it h daily sit u at ion s. Lik e
adult s, t he child experiences t he pain associat ed wit h
diseases like Cancer, Juvenile I diopat hic Art hrit is ( JI A) ,
Sick le Cell Disease, Hem op h ilia, accid en t al t r au m a
and burns( 1- 4) .
Resu lt s of a lit er at u r e r ev iew h igh ligh t t h at
r esear ch about chr onic pain in childr en hav e focused
on pain assessm ent , m ainly it s durat ion and int ensit y,
neglect ing it s im pact and funct ional consequences for
t he child and fam ily, w hich ar e ext r em ely r elevant( 5).
St u d i es sh o w t h a t ch i l d r en ’ s ch r o n i c p a i n
generally changes fam ily funct ioning t hrough t he new
dem ands it creat es, m aking it possible or not t o creat e
abilit ies for t he fam ily t o overcom e t his event( 1- 2,6).
I n t h i s p e r sp e ct i v e , f u r t h e r k n o w l e d g e i s
n eeded abou t t h e ex per ien ce of fam ilies of childr en
w it h JI A, as r esear ch h as on ly f ocu sed on asp ect s
like: insecurit y and im pot ence t owards t reat m ent and
care for t he child; t he educat ion m ode t hat is offered;
t he fam ily ’s feeling t hat it s life is st agnat ed ar ound
t h e ch ild ’s p ain , b esid es t h e am b iv alen ce b et w een
hope and confor m ism w it h t he child’s fut ur e physical
condit ion( 3- 4,7).
Som e charact erist ics of JI A, including t he fact
t h at it is in cu r ab le an d p r og r essiv e, d isp lay in g an
uncert ain evolut ion for t he child in t erm s of disabilit y
an d ph y sical depen den ce( 3 ), ar ou sed ou r in t er est in
ob t ain in g k n ow led g e ab ou t t h e f am ily ’s ex p er ien ce
of t he pain sit uat ion in children.
I n t his sense, t his st udy aim s t o: underst and
t he m eaning of t he experience of fam ilies of children
liv in g in p ain sit u at ion s d u e t o JI A an d d ev elop a
t h eor et ical m od el of t h e ex p er ien ce of f am ilies of
children living in pain sit uat ions due t o JI A.
T H E O R E T I C A L - M E T H O D O L O G I C A L
APPROACH
St u dy ch ar act er ist ics
As a m et h od olog ical r ef er en ce f r am ew or k ,
w e u sed Gr o u n d ed Th eo r y, w h i ch co n si st s i n t h e
d i sco v er y an d d ev el o p m en t o f a t h eo r y b ased o n
i n f o r m a t i o n t h a t i s c o l l e c t e d a n d a n a l y z e d
syst em at ically and com parat ively. The aut hors highlight
t hat t he t heory m eans “ a st rat egy t o work wit h research
d at a, w h ich p r ov id es w ay s of con cep t u alizat ion t o
descr ibe and ex plain”. This m et hod does not aim t o
est ablish a per fect descr ipt ion of t he r esear ch ar ea,
but t o creat e a t heory t hat precisely j ust ifies t he realit y
of social int er act ion and it s st r uct ur al cont ex t in t he
light of an adequat e t heoret ical reference fram ework( 8).
Sy m bolic I n t er act ion ism w as ch osen as t h e
t heor et ical fr am ew or k because it gr ant s fundam ent al
im por t ance t o t he sense t hings r epr esent for hum an
behavior, and it s m eaning is seen as a social product
t hat or iginat es in sy m bolic int er act ion, in w hich t he
hum an being defines and int er pr et s act ions t hr ough
t he act iv it ies people dev elop w hile int er act ing( 9).
Place of st udy and subj ect s
Th e st u d y w as car r ied ou t at t h e p ed iat r ic
specialt y out pat ient clinic, in t he rheum at ology sect or
of a t eaching hospit al in t he cit y of São Paulo, which
delivers care t o children wit h JI A up t o t he age of 18.
Fi r st , t h e r e se a r ch p r o j e ct w a s a p p r o v e d b y t h e
I nst it ut ional Review Board of t he inst it ut ion where dat a
w er e collect ed.
Con t act w it h t h e f am ilies w as m ade at t h e
o u t p a t i e n t cl i n i c a n d e a ch f a m i l y w a s i n v i t e d t o
part icipat e in t he st udy, including t he children. I f t hey
w er e in t er est ed an d av ailab le, t h e in t er v iew s w er e
sch ed u led w it h t h e f am ily an d r ecor d ed w it h t h eir
consent . The select ion was incident al and t he m edical
t eam helped t o ident ify t he fam ilies, according t o t he
for m and sever it y of t he child’s JI A.
Th e n u m b er of f am ilies w as b ased on t h e
r esear ch er ’s an aly sis of t h e t est im on ies an d on h er
ob ser v at ion s, an d g u id ed b y sam p le g r ou p s( 9 ). Th e
r eflect ions cou ld in dicat e t h at ot h er dat a h ad t o be
collect ed in or d er t o b et t er d ev elop t h e cat eg or ies
and m ak e t hem denser as dat a analy sis pr oceeded.
D a t a w e r e c o l l e c t e d u n t i l t h e o r e t i c a l s a t u r a t i o n
occur r ed, w hen r epet it ion w as found, as w ell as t he
a b s e n c e o f n e w d a t a a n d t h e p r o g r e s s i v e
under st anding of t he ident ified concept s.
St udy part icipant s were 12 fam ilies of children
b et w een 6 an d 1 7 y ear s old , w h o ex p er ien ced t h e
sit u at ion of pain as a r esu lt of JI A an d w er e u n der
follow - up at t he Rheum at ology Out pat ient Clinic, as
show n in Tables 1 and 2 below. I n t ot al, 27 per sons
par t icipat ed: 12 m ot her s, 2 fat her s, 11 childr en w it h
Table 1 – Ch aract er izat ion of par t icipan t fam ilies accor din g t o age, civ il st at u s, r eligion , fam ily in com e an d
edu cat ion lev el
e g
A Civlistatus Reilgion Famliyincome1 Educationlevel
0 6 -4 2 s r e h t a
F Married:6 Cathoilc:8famiiles Upto2:4famiiles Unifnishedbasiceducaiton:9fathers;10mothers
8 4 -8 2 s r e h t o
M Separated:5 Evangeilc:1famliy Between2and4:3famiiles Unifnishedsecondaryeducaiton:1father;1mother 1
: d e w o d i
W Noreilgion:1famliy Morethan7:3famiiles Finishedsecondaryeducaiton:1mother
s e il i m a f 2 : d e m r o f n i t o
N Notinformed:2famiiles Notinformed:2fathers 1 in num ber of m inim um w ages
Table 2 – Ch ar act er izat ion of par t icipan t ch ildr en accor din g t o age, gen der, diagn osis t im e, JI A act iv it y an d edu cat ion lev el
d li h
C (yAegaers)Gender Diatgimnoesis JIAactivtiy JRAcharacterization Educationlevel
1 17 F 15years acitve systemic,withpain,withoutilmitaitonanddeformity Finishedsecondaryeducaiton m a x e y r t n e e g e ll o c
2 6 M 4months inacitve systemic,withoutpain,ilmitaitonanddeformity Preschool 3 8 F 2years acitve systemic,withpain,ilmitaitonanddeformity 1stgradeBE
4 11 F 1year acitve systemic,withpain,ilmitaitonanddeformity 4thgradeBE
5 13 F 4years acitve systemic,withpainandilmitaiton,withoutdeformity 4thgradeBE
6 15 F 11years inacitve systemic,withoutpain,withilmitaiton,withoutdeformity 8thgradeBE
7 9 F 7years inacitve systemic,withoutpain,ilmitaitonanddeformity 2ndgradeBE
8 12 F 4years acitve polyaritcular,withpain,withoutilmitaitonanddeformity 4thgradeBE
9 12 F 7months acitve systemic,withpainandilmitaiton,withoutdeformity 7thgradeBE
0
1 15 F 11years inacitve systemic,withoutpain,withilmitaitonanddeformity 6thgradeBE
1
1 10 F 4years inacitve systemic,withoutpain,ilmitaitonanddeformity 3rdgradeBE
2
1 7 F 4years inacitve polyaritcular,withoutpain,withilmitaiton,withoutdeformity 1stgradeBE
BE= basic educat ion
Dat a collect ion and analy sis
I nt er v iew s and obser v at ions w er e st r at egies used for dat a collect ion, and were im port ant resources
t o u n d er st an d t h e f am ily ex p er ien ce of ch ild r en in pain due t o JI A. The int er v iew s w er e sem ist r uct ur ed an d gu ided by t h e follow in g qu est ion : “ Wh at h as it
been like for you t o have a child in pain due t o Juvenile I diopat hic Ar t hr it is ( JI A) ?”
Qualit at iv e int er v iew s aim t o under st and t he per son’s exper ience and, t hus, one exper ience is not
t r uer t han t he ot her. We can find several ver sions of t h e s a m e e v e n t a n d t h e y c a n r e f l e c t d i s t i n c t per spect iv es on t he fact t hat occur r ed( 10) .
Observat ion is anot her im port ant st rat egy, as it allow s r esear cher s t o hav e close cont act w it h t he subj ect s’ ex per ience, look ing fr om t heir per spect iv e,
facilit at ing t he underst anding of t he m eanings subj ect s at t ribut e t o act ions( 11).
D u r i n g d a t a co l l e ct i o n , ca r r i e d o u t f r o m Sept em ber 2001 t o August 2002, t he fam ily m em bers’ behavior was observed while t hey wait ed for t he child
t o receive care, as well as t heir int eract ions wit h t eam m em ber s and ot her per sons pr esent t her e. All fact s
t hat happened w er e w r it t en dow n, w hich w er e called “ obser vat ion n ot es”.
D a t a c o l l e c t i o n a n d a n a l y s i s w e r e d o n e s i m u l t a n e o u s l y, a s r e c o m m e n d e d b y Gr o u n d e d
Th e o r y. D a t a w e r e c o l l e c t e d u n t i l t h e o r e t i c a l sat u r at ion occu r r ed, w h en r epet it ion w as f ou n d, as well as t he absence of new dat a and t he progressive under st anding of t he ident ified concept s( 8).
Th e f ollow in g st ep s w er e f ollow ed f or d at a a n a l y s i s : o p e n c o d i n g , w h i c h c o n s i s t s i n t h e iden t ificat ion an d an aly sis of dat a obt ain ed t h r ou gh int erviews and observat ions, which are exam ined line by lin e an d cu t in t o u n it s of an aly sis, called codes. Aft er coding each int erview, cat egorizat ion was done, w hen t he codes w er e gr ouped int o cat egor ies, based on t h eir con cep t u al sim ilar it ies. Th eor et ical cod in g c o n s i s t s i n a n i n t e n s e i n d u c t i o n a n d d e d u c t i o n m ovem ent , in which dat a are com pared and cat egories ar e m ade denser, per m it t ing t he ident ificat ion of t he cen t r al cat egor y t h at r epr esen t s t h e lin k am on g all cat egor ies. This should be br oad enough t o ex pr ess t he essence of t he st udy phenom enon and allow for t he pr oposal of t he t heor et ical m odel t hat descr ibes t he experience under st udy( 8).
RESULTS
Dat a an aly sis allow ed f or t h e d ev elop m en t of t he t heoret ical m odel Care delivery for t he child t o grow up despit e t he pain ( Figure 1) , which represent s t he fam ily’s experience of t he sit uat ion of pain due t o
Figu r e 1 - Th e t h eor et ical m odel: Car e deliv er y f or
t he child t o grow up despit e t he pain
Th e e x p e r i e n c e t h a t e m e r g e d f r o m t h e
int egrat ion of concept s reveals t hat t he fam ily lives a
t r aj ect or y in w hich m eanings and obj ect iv es int er act
all t h e t im e. Th is ex p er ien ce is st r u ct u r ed ar ou n d
elem ent s defined as m ot ivat ional and int ervenient and
a cen t r al cat egor y, w h ich appear ed as an essen t ial com ponent in t he daily lives of fam ilies t hat t ake care
of a child wit h JI A.
I n t he fam ily ’s int er act ion w it h t he elem ent s
p r e s e n t i n t h e e x p e r i e n c e , m o t i v a t i o n i s a k e y
co m p o n en t i n t h e f a m i l y ’ s i n t er a ct i o n t o p er f o r m
act ions in it s daily realit y. Thus, it is t he st rengt h t hat m ov es t he fam ily t ow ar ds specific act ions.
I n t h e ex per ien ce u n der st u dy, t h e fam ily ’s
m ot iv at ion and consequent act ions w er e r elat ed w it h
int eract ions t hat occur in t wo dom ains: t he dom ain of
t h e d i sease an d , h en ce, t h e p ai n , an d t h e ch i l d ’s
dom ain as a being t hat gr ow s and dev elops.
For t hese m ot ivat ions t o becom e r ealit y, t he
fam ily should use st r at egies and act ions t o ex ecut e
t he child’s t r eat m ent and t he at t em pt t o r eest ablish
n or m al lif e, af f ect in g t h e lif e cy cles of t h e disease,
t he fam ily and t he child.
Wh en in t er act in g w it h t h e ch ild ’s d isease, in t en t ion s ar e cr eat ed t o deliv er car e in t h e ch ild’s
daily life. These r eflect t he act ions per for m ed by t he
f a m i l y, w h i ch co n st a n t l y i n t e r a ct s w i t h t h e p a i n , seeking ways t o relieve it and want ing t o see t he child
fr ee fr om pain.
The sear ch for t he child’s diagnosis is not a
calm t rip, but oft en quit e confusing and t aking a long t im e. Wh en discov er ed, it gen er at es r elief, besides
f eelin gs of f ear an d in secu r it y du e t o t h e f act t h at
everyt hing is unknown during t his wait ing period. This phase ent ails expect at ions for t he fam ily, suspending
Wanting to see the child lead a normal life
Wanting to get out of this nightmare
Preparing the child to live with the disease
situation Living in function
of the child com dor
Wanting to see the child free from pain
Leading the child’s life
normally
Overcoming barriers
CARE DELIVERY
FOR THE CHILD TO GROW UP DESPITE THE PAIN
Waiting for a miracle
Having to live with uncertainties
Wanting a good future
i t s l i f e a n d m a k i n g i t ex cl u si v el y d i r ect ed a t t h e discov er y of t he diagnosis.
Li f e st o p p ed f o r ev er y b o d y w h en h e w as t h er e,
everyt hing st opped, we j ust t hought about t he hospit al, about
him , oh dear, he’s our first grandson, he’s a son and a brot her. ( F2)
Th e f am ily t r ies t o r eest ab lish t h e b alan ce
t hat was lost , during t he t ransit ion phase experienced b e t w e e n t h e h e a l t h y ch i l d , t h e d i sco v e r y o f t h e diagnosis and life wit h a chronic disease. I t s m em bers liv e a n ew ph ase w h er e t h ey sh ou ld lear n t o apply
act ion s t h at h elp t h e ch ild t o liv e w it h h is/ h er n ew liv ing condit ion and need t o dev elop w ay s of dealing wit h t he child’s fear about t he fut ure.
We are dealing wit h her, we already got used t o it , you
know. My m ot her deals wit h her norm ally, I do norm ally, I carry
her, go out wit h her, we do a bit of everyt hing for her. ( F3)
The fam ily needs t o overcom e t he init ial shock o f r e ce i v i n g t h i s d i a g n o si s a n d d e v e l o p w a y s o f
lear ning how t o liv e w it h t he unpr edict abilit y of t he arrival of pain and, t hus, of a crisis. Rem aining on t he a l er t , b u t n ev er t h el ess h a v i n g t o m a n a g e t o l i v e norm ally, t he fam ily rem ains at t ent ive so t hat t he ot her
ch ild r en d o n ot t o f eel n eg lect ed or lef t b eh in d in funct ion of t he child wit h pain.
When I see t hat she lay down and slept , I say ih, she’s
not well t oday, when she’s very quiet she’s not well. ( F4)
Th e ch an g e in f am ily f u n ct ion in g st ar t s b y dest r uct ur ing t he for m er balance, leading t o changes
in t h e r oles play ed by it s m em ber s an d pu t t in g an ov er load on som ebody. These fam ily r ear rangem ent s a r e n o t a l w a y s d i scu sse d , b u t o f t e n i m p o se d o r co n si d er ed au t o m at i c f o r t h e f am i l y m em b er w h o already played t his role before t he disease event . As soon as t he child’s disease is inst alled in t he fam ily’s life and st art s t o be a part of it , wit h t he m ot her assum ing all care, it s m em bers ret urn t o t heir previous life.
I ’ m t h e o n e w h o ’ s co n cer n ed w i t h h er a t hom e, y ou k now w hat m en ar e lik e, r ight , boy s w ill be boys, t hey don’t t ake int erest like t he m ot her. ( F7) Th e f act t h at t h e m ot h er r em ain s closer t o car e f or t h e sick ch ild t h an ot h er r elat iv es m ak es h er per ceiv e t h e ch ild’s f ragilit y m or e clear ly, t r y in g t o p r ot ect h im / h er an d d ed icat in g h er self m or e t o ca r e d e l i v e r y. Th i s si t u a t i o n cr e a t e s co n f l i ct s i n f a m i l y r e l a t i o n s b e c a u s e t h e m e m b e r s d o n o t u n d e r s t a n d t h i s n e w d y n a m i c s i m p o s e d b y t h e ch r on ic d isease, w h ich d em an d s a lot of at t en t ion t o t h e c h i l d . T h e m o t h e r h a s t o m a n a g e t h i s
dy n am ics an d assu m e a con ciliat or y posit ion am on g t h e f am i l y m em b er s.
All siblings were j ealous of A. because she received all
Dur ing her ex per ience of t he child’s illness, t h e m o t h e r i s co n f r o n t e d w i t h d i f f e r e n t k i n d s o f adversit ies t hat need t o be overcom e in order t o reach t he big goal of delivering care for t he child t o grow up
despit e t he pain. Pr ej udice and lack of consider at ion for t he child’s disease sit uat ion are t he elem ent s t hat m ost discourage her.
The boys keep on m essing wit h her, m aking fun of her,
calling her nam es, clone, ‘robocop’, because she walks in a st iff
w ay, she doesn’t run. ( F5)
The second m ot ivat ional elem ent , w ant ing t o see t he child lead a norm al life, represent s t he fam ily’s in t er act ion w it h t h e ch ild’s dom ain as a bein g t h at g r o w s a n d d e v e l o p s , b e s i d e s e x p e r i e n c i n g t h e sit uat ion of chronic pain in t he child, being obliged t o p e r f o r m a ct i o n s t o g r a n t h i m / h e r a n o r m a l l i f e ,
discer ning his/ her dev elopm ent acr oss t he life cy cle in order t o achieve a norm al fut ure like ot her people. The fam ily ’s m ot iv at ion is t o t each t he child how t o live w it h t he pain, encour age his/ her r elat ion
wit h peers in order t o be able t o part icipat e in physical act iv it ies, such as play ing, r unning, j um ping, hav ing social cont act wit h ot her people, having friends, going t o school and par t icipat ing in ot her social act iv it ies.
Dur ing it s ex per ience of ar t hr it is, t he fam ily lear ns t hat ev en childr en w it h a chr onic disease can grow up norm ally, t hat is, wit h dem ands t hat are equal t o t hose of healt hy childr en, and is obliged t o r elat e
w it h t he child in t he best possible w ay, even if t his r elat ion is som et im es m ar k ed by difficult ies in t er m s of u n su it ab le b eh av ior, or in t er m s of t h e n eed t o est ablish lim it s, w hich are as norm al as in any ot her
f am ily.
Now she plays w it h everybody, t alks, plays soccer,
does a bit of everyt hing. ( F7)
I n view of t his new dem and, t he fam ily needs
t o learn new st rat egies but , for t his t o occur, it should at t em pt t o lead t he child’s life norm ally. This is a new nor m alit y, adapt ed t o t he child’s lim it ing condit ions.
I adapt ed t he places t o m ake it easier for her t o walk
around at hom e. ( F9)
As t he child grows up, t he fam ily will have t o dev elop abilit ies t o r elat e w it h h im / h er as, despit e t he chronic condit ion, ( s) he has t o live wit h peers and,
t herefore, som e act ions have t o be developed so t hat t he child can have a norm al life like ot her children.
I t each her t o dry t he dishes, obliging her t o m ake an
effort t o do som e housework, t aking care so t hat she doesn’t
t hink t hat she’s an invalid. ( F10)
Th e ch ild’s ch r on ic con dit ion dem an ds a lot of learning from t he fam ily, as it should prepare him / her for t he fut ure, t each him / her t o face t he disease
and liv e w it h t he lim it at ions, encour aging him / her t o perform t he act ivit ies t hat are possible and st im ulat ing his/ her independence for adult life.
Now A. is already t aking t he preparat ory course, she
goes on her own, com es t o t he doct or alone. ( F1)
The fam ily believes t hat a fut ure wit hout t he disease will happen, feels hope of finding t he cure for t he child, w het her by t he dev elopm ent of new dr ugs
or by a m ir acle. The m em ber s ar e st r engt hened by r eligiousness, r epr esent ed by a lot of fait h in God.
We lead our lives as God want s it , but I hope t hat she’ll
be fine. ( F8)
A n o t h e r c o n s t r u c t t h a t m a k e s u p t h e t h e o r e t i ca l m o d e l i n t h i s st u d y a r e i n t e r v e n i e n t elem ent s, called: want ing t o get out of t his night m are, having t o live wit h uncert aint ies, wait ing for a m iracle and w ant ing a good fut ure.
Th e f am ily ’s act ion s ar e in f lu en ced b y t h e i n t e r v e n i e n t e l e m e n t s, w h i ch a r e i t s m a n i f e st e d desir es, at t em pt ing t o hav e it s needs solv ed.
Want ing t o get out of t his night m are is a desire t hat int erferes negat ively in t he fam ily, st im ulat ing it s m em bers t o persist in t heir desire for t he child not t o have a chronic disease, not t o feel pain, have neit her
phy sical r est r ict ions nor defor m it ies nor suffer ing.
You feel anguished when you don’t know if she’s gonna
get bet t er soon and when you don’t know t he ext ent t o which
she’s feeling pain, we know t hat t he pain is st rong but not how
st rong. ( F2)
Hav in g t o liv e w it h u n cer t ain t ies is an ot h er desire t hat reveals how t he fam ily spends m ost of it s t i m e, so m et i m es t r y i n g t o u n d er st a n d t h e ch i l d ’ s
disease, som et im es hav ing t o liv e w it h doubt s about t r ea t m en t , a b o u t t h e n ex t p a i n f u l cr i si s, a b o u t a possible phy sical disabilit y, about t he child’s possible physical deform it ies, generat ing a lot of suffering and
in secu r it y f or ev er y body.
You don’t know, will she wake up well t oday, we get
like, t he fear t hat she won’t wake up well. ( F7)
Th e f a m i l y a l w a y s d e s i r e s a n d d r e a m s ,
wait ing for a m iracle, for t he child t o be cured, despit e k n ow in g t h at t h e disease is ch r on ic an d t h at it can on ly be con t r olled. Nev er t h eless, it s m em ber s h av e f ait h an d believ e t h at God ex ist s an d t h at m ir acles
can h appen .
The doct ors say t hat t here’s no cure, but I ’m sure t hat
t here is one, I don’t believe it ’s possible t hat t here’s no cure for
t his disease. ( F11)
a life wit hout pain and rest rict ions for t he child, t rying t o obt ain t he cur e by m aking t he effor t of t he har sh t r eat m en t .
I am doing everyt hing t o avoid a bad fut ure, not hing’s
im possible for God. ( F9)
DI SCUSSI ON
Th e r esu lt s of t h is st u dy r ev ealed t h at t h e im pact of t he Juvenile I diopat hic Art hrit is ( JI A) diagnosis is enhanced by t he abrupt change in t he condit ion from
nor m al t o sick child. Besides, t he pain appear s as a const ant precursor of t he next crises, leaving t he fam ily subm er ged in an unknow n univer se. The fam ily feels insecure and t hreat ened by t he child’s unknown fut ure,
relat ed t o lim it at ions and physical deform it ies. I n general, t he disease appears unexpect edly and assault s t he fam ily, m ainly when it affect s a child. Wh en h ospit alizat ion is n eeded, n on e of t h e t w o is
p r ep ar ed t o d eal w it h t h is su d d en ch an g e in d aily r ealit y. For t h e ch ild, t h e h ospit alizat ion r epr esen t s f ear of t h e u n k n ow n , p h y sical su f f er in g cau sed b y t he pr ocedur es and m ent al suffer ing r elat ed t o all of
t he new feelings ( s) he st ar t s t o ex per ience. For t he f am ily, it m ean s t h e f eelin g of losin g n or m alit y, of in secu r it y in t h eir f u n ct ion as p ar en t s, of f in an cial change in t he dom est ic budget , of pain due t o t heir
child’s suffer ing.
The fam ily’s biggest concern is evidenced by t he ur gency t o r eliev e t he child’s pain, adopt ing t he ch ild’s n eeds as on e sign if ican t f ocu s, ex plain ed by
t he m ot ivat ional elem ent want ing t o see t he child free fr om pain.
I t is consider ed essent ial t o under st and t he f a m i l y l i f e c y c l e a n d t h e p s y c h o s o c i a l d e m a n d s
det erm ined by t he JI A, as t his const it ut es part icularly relevant elem ent s in t he fam ily’s experience, allowing us t o ident ify how t he fam ily copes w it h t he disease experience, as well as t he crises t hat st art t o exist in
t he fam ily ’s dev elopm ent w hile ex per iencing JI A. I n t his st udy, t he discovery phase of t he pain and chronic disease experienced by t he child’s fam ily is sim ilar t o t he denom inat ion of t he cr isis phase of
ch r on ic disease descr ibed in a st u dy abou t t h e lif e cy cle of t he disease. The aut hor highlight s t hat t his m om en t is ch ar act er ized b y t h e app ear an ce of t h e sy m pt om s, t he occur r ence of t he diagnosis and t he
st art of t reat m ent , causing insecurit y and fear in t he fam ily( 12).
I n t his st udy, it is obser v ed t hat t he child’s disease im posed a m ov em en t of t h e f am ily sy st em
t o incorporat e it s needs, leading t o a crisis in t he unit as a w hole.
For t he child’s fam ily, in m ost cases, t he pain m e a n s e x p e r i e n ci n g m o m e n t s o f cr i si s t h e y a r e
con f r on t ed w it h acr oss t h e lif e cy cle, m ain ly w h en t h e ch ild n eeds t o be h ospit alized, f acin g st r essin g sit uat ions( 13).
The im pact of t he child’s chronic pain is very
p r esen t i n t h e m ar r i ag e, as t h e m o t h er g en er al l y car r ies t he ov er load of giv ing up her j ob, hom e and h ou sew or k in or der t o f u lly dedicat e h er self t o t h e sick child, who now dem ands m ore care and at t ent ion,
im pair ing t he couple’s int im acy( 14).
I n t his st udy, t he m ot her act s, perceiving t he need for intervention characterized by the other children’s j ealousy of t he at t ent ion direct ed at t he child in pain,
finding herself obliged to harm onize fam ily relations. The m other plays this conciliatory role as a fam ily balancing factor, capable of m itigating the tensions that occur in the relationships am ong its m em bers( 15).
Th e f a m i l y ’ s o t h e r m o t i v a t i o n a l e l e m e n t , t r anslat ed by w ant ing t o see t he child lead a nor m al life, shows how t he fam ily deals wit h t he st ress of t he disease, at t he sam e t im e as it develops as a fam ily
unit . I n t his sense, t he following fundam ent al quest ion also em er g ed : w h at is t h e w ay t h e f am ily u ses t o achiev e a funct ional lev el t hat is appr opr iat e t o t he d em an d s p o sed b y t h e ch i l d ’s d i sease an d t o t h e
a v a i l a b l e r e s o u r c e s , a s w e l l a s t o t h e d i f f e r e n t dim ensions of fam ily life, in t he cont ex t of t he JI A, providing a norm al life t o t he child?
The fam ily perform s t he act ion of leading t he
child’s life norm ally in t he present in order t o prepare t he child t o face t he adver sit ies t hat w ill com e up in t he fut ure. This norm alit y is definit ely adapt ed t o t he child’s condit ions, but allow s him / her t o go t o school
nor m ally and m aint ain life w it h his/ her colleagues. The fam ily describes t he difficult y it faces as t he child gr ow s up and becom es an adolescent . The adolescent put s t o t he t est t he st rict t reat m ent
follow-up t he fam ily used t o m aint ain unt il t hen, r ebelling against it , put t ing t he fam ily in a vulnerable sit uat ion, as t hey know t hat t he disease is progressive and t hat follow ing t he t r eat m ent is t he only opt ion t o t r y and
av oid it s pr ogr ession.
I n t h is ph ase of dev elopm en t fr om ch ild t o ad olescen t , t y p ical d em an d s ar e g en er at ed . Th ese r equir e t he fam ily t o pr om ot e t r ansfor m at ions in t he
Th e appear an ce of t h e ch ild’s ch r on ic pain , at t he sam e t im e as t he dev elopm ent of his/ her life cycle, shakes up one of t he basic obj ect ives of growt h, which is t he conquest of adequat e independence from t he fam ily it self. Thus, t he ex t ent t o w hich t he pain int erferes in t he act ivit ies perform ed out side t he fam ily and school environm ent needs t o be assessed, t rying t o harbor a new norm alit y for t he child.
For t he fam ily, it is prim ordial t o exam ine how t he child’s relat ion wit h his/ her peers occurs in school, if ( s) h e h as f r ien d s, if ( s) h e can p ar t icip at e in t h e children’s gam es, how ( s) he deals wit h t he lim it at ions and how ( s) he feels about t he quest ions colleagues a s k a b o u t h i s / h e r c o n d i t i o n , i n o r d e r t o h a v e param et ers t o gradually prepare t he child t o live wit h t he disease sit uat ion.
Th e d isease cy cle is ad d ed t o t h e f am ily ’s developm ent cycle, incorporat ing t he dem ands of t he disease in t r eat ing t he child w it h pain as nor m al, in dealing wit h t he problem s of each phase in t he child’s d e v e l o p m e n t . On e o f t h e f a m i l y ’ s m o st a n x i o u s desires is for t heir child t o be norm al like ot hers and, t o t he ex t ent t hat ( s) he gr ow s up w it h t he disease, t he fam ily dream s t hat ( s) he can do everyt hing ot her childr en do, concur r ing w it h t he ot her s t o w or k , and hav ing a nor m al life lik e ot her people.
I t is im p or t an t t o p u t t h e ev olu t ion of t h e
chr onic disease in a dev elopm ent al cont ex t in or der
t o underst and t he int erface in t he relat ionship bet ween
f am ily d y n am ics an d t h e ch ild ’s ch r on ic d isease in
differ ent life cy cles( 12).
CONCLUSI ONS
Th i s s t u d y a d v a n c e s b y d e v e l o p i n g t h e
t heor et ical m odel Car e deliv er y for t he child t o gr ow
up despit e t he pain, m aking it possible t o at t end t he fam ilies of childr en in pain due t o JI A, helping t hem
t o under st and t he st ar t of t he disease, m anaging t o
ov er com e t he im pact of t he diagnosis m or e rapidly,
accom m odat ing t he disease in t he fam ily, per m it t ing
t he m aint enance of fam ily st r uct ur e and coping w it h
t he childr en’s chr onic pain.
An i m p o r t a n t a sp e ct o f t h e e x i st e n ce o f
t heor et ical m odels of fam ily ex per iences cr eat ed on
t he basis of research result s is t he possibilit y t o discuss
t he influence of t hese result s on pract ice wit h fam ilies,
pr ov iding a t heor et ical r efer ence fr am ew or k t o guide
t each in g, r esear ch an d car e pr act ices, adv an cin g in t er m s of t heor et ical k now ledge for t he nur sing ar ea.
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