EXPERI ENCES OF FAMI LI ES W I TH CHI LDREN AND ADOLESCENTS AFTER COMPLETI NG A
CANCER TREATMENT: SUPPORT FOR THE NURSI NG CARE
1Mar ia Car olina Alv es Or t iz2 Regina Apar ecida Gar cia de Lim a3
Or t iz MCA, Lim a RAG. Exper iences of fam ilies w it h childr en and adolescent s aft er com plet ing a cancer t r eat m ent : suppor t for t he nur sing car e. Rev Lat ino- am Enfer m agem 2007 m aio- j unho; 15( 3) : 411- 7.
The sur v iv al of childr en and adolescent s w it h cancer has incr eased in r ecent y ear s. Resear cher s and pr ofessionals in t he healt h ar ea hav e pr ior it ized st udies on t he delayed effect s of t he t r eat m ent and qualit y of life of t h e su r v iv or s. Th is st u dy aim s t o u n der st an d h ow par en t s an d ot h er fam ily m em ber s of ch ildr en an d adolescent s w it h cancer , ex per ience t he com plet ion of t he t r eat m ent . This descr ipt iv e and ex plor at or y st udy adopt ed a qualit at ive m et hodological appr oach. A t ot al of t en fam ilies w hose childr en had com plet ed t he cancer t r eat m ent and w er e in follow - up in a hospit al- school w er e select ed for t he st udy . The dat a w er e or ganized in t w o t hem at ic ax es: t he m em or y % w hat w as ex per ienced and t he pr esent % w hat is being ex per ienced. The st u dy ev iden ced t h e par t icipan t s’ v it alit y t o su r v iv e t h e t r eat m en t an d f r agilit y t o liv e af t er it . Th e r esu lt s allow ed iden t if y in g aspect s t h at n eed in t er v en t ion , aim in g at t h e im pr ov em en t of qu alit y of lif e of ch ildr en , adolescent s and t he w hole fam ily aft er t he end of t he t r eat m ent .
DESCRI PTORS: n eoplasm s; ch ild; adolescen t ; fam ily ; su r v iv or s; pediat r ic n u r sin g
EXPERI ENCI AS DE FAMI LI ARES CON NI ÑOS Y ADOLESCENTES, POSTERI ORES AL
TÉRMI NO DEL TRATAMI ENTO DE CÁNCER: SUBSI DI OS PARA EL CUI DADO DE
ENFERMERÍ A
La so b r e v i v e n ci a d e n i ñ o s y a d o l e sce n t e s co n cá n ce r v i e n e a u m e n t a n d o e n l o s ú l t i m o s a ñ o s. I nv est igador es y pr ofesionales del ár ea de la salud han est ablecido com o pr ior idad, est udios sobr e los efect os t ar díos del t r at am ient o y la calidad de v ida de los pacient es. El obj et iv o de est e est udio es com pr ender com o las fam ilias de niños y adolescent es con cáncer vivencian el t ér m ino del t r at am ient o. El est udio es de nat ur aleza descr ipt ivo- explor at or ia con análisis cualit at ivo de los dat os. Par t icipar on diez fam ilias de niños y adolescent es en la et apa final de su t r at am ient o seguido dent r o de un hospit al- escuela. Los r esult ados fuer on or ganizados en d os ej es t em át icos: la m em or ia- lo q u e f u e v iv id o y el p r esen t e- lo q u e se v iv e. Con est e est u d io, se ev id en ció la v it alid ad d e los p ar t icip an t es p ar a t er m in ar el t r at am ien t o y la f r ag ilid ad d e v iv ir p ost er ior al m ism o. Los r esu lt ados per m it en iden t if icar aspect os qu e r equ ier en de in t er v en ción , t en ien do com o obj et iv o una m ej or calidad de v ida par a los niños, adolescent es y par a su fam ilia, post er ior al t r at am ient o.
DESCRI PTORES: n eoplasias; n iñ o; adolescen t e; f am ilia; sobr ev iv ien t e; en f er m er ía pediát r ica
EXPERI ÊN CI AS DE FAMI LI ARES DE CRI AN ÇAS E ADOLESCEN TES, APÓS O TÉRMI N O DO
TRATAMENTO CONTRA CÂNCER: SUBSÍ DI OS PARA O CUI DADO DE ENFERMAGEM
A sobr ev ida de cr ianças e adolescent es com câncer t em aum ent ado nos últ im os anos. Pesquisador es e pr ofissionais da ár ea de saúde t êm est abelecido com o pr ior idade est udos sobr e os efeit os t ar dios do t r at am ent o e qualidade de v ida dos sobr ev iv ent es. O obj et iv o dest e est udo é com pr eender com o as fam ílias de cr ianças e adolescent es com câncer vivenciam a exper iência do t ér m ino do t r at am ent o. O est udo é de nat ur eza descr it ivo-ex plor at ór ia com análise qualit at iv a dos dados. Par t icipar am dez fam ílias de cr ianças e adolescent es na fase d e t ér m i n o d o t r a t a m en t o q u e est a v a m em a co m p a n h a m en t o em u m h o sp i t a l - esco l a . Os d a d o s f o r a m or ganizados em dois eix os t em át icos: a m em ór ia - o que foi v iv ido e o pr esent e - o que se v iv e. Com esse est udo, ev idenciou- se a v it alidade dos par t icipant es de sobr ev iv er ao t r at am ent o e a t enuidade de v iv er após ele. Os r esu lt ados possibilit ar am iden t ificar aspect os qu e n ecessit am de in t er v en ção, obj et iv an do a m elh or ia da qualidade de v ida de cr ianças, adolescent es e da pr ópr ia fam ília, após o t ér m ino do t r at am ent o.
DESCRI TORES: n eoplasias; cr ian ça; adolescen t e; f am ília; sobr ev iv en t es; en f er m agem pediát r ica
1
St udy ext r act ed fr om Mast er Thesis; 2 M. Sc. I n Nur sing, RN Hospit al das Clínicas Univer sit y of São Paulo, Medical School at Ribeir ão Pr et o, Br azil, e- m ail: or t iz@eer p.usp.br ; 3 Associat e Pr ofessor Univer sit y of São Paulo at Ribeir ão Pr et o College of Nur sing, WHO Collabor at ing Cent er for t he Nur sing Resear ch
Developm ent , Br azil, e- m ail: lim ar e@eer p.usp.br
I NTRODUCTI ON
I
n Brazil, t he incidence of pediat ric cancer is st i l l u n k n o w n i n i t s f u l l ex t en t , a l t h o u g h n a t i o n a lest im at es from specialized services, affiliat ed w it h t he
Br azilian Societ y of Pediat r ic Oncology ( SOBOPE) and
regist ered at t he Minist ry of Healt h, indicat e bet w een
8 , 0 0 0 a n d 1 0 , 0 0 0 ca se s/ y e a r i n Br a z i l( 1 ). N o r t h
Am er ican st at ist ics est im at e t h at on e in ev er y 9 0 0
per sons bet w een 16 and 44 year s old w ill be a sur vivor
of child cancer. This r at e is expect ed t o r each one in
ev er y 2 5 0 by 2 0 1 0( 2). I n Br azil, ch ildr en an d y ou n g
p eop le w it h acu t e ly m p h oid leu k em ia ar e cu r ed in
80% of cases( 3).
Now aday s, being fr ee fr om t he disease fr om
a m ed i cal p er sp ect i v e i s a g r o w i n g p o ssi b i l i t y f o r
ch ildr en an d adolescen t s w it h can cer. How ev er, t h e
em ot ional and social dim ensions of cur e need t o be
t aken int o account . I n t his sense, if t he experience of
h av in g a can cer affect s all lev els of t h e ch ild’s, t h e
adolescent ’s and t heir relat ives’ lives, t he sam e is t rue
for t he experience of surviving such a severe disease
and aggressive t reat m ent( 4). Children cured from cancer
ar e ex - pat ien t s, w h o m ay su f f er f r om m or e or less
visible and disabling physical and m ent al sequela and
preserve, for a long t im e, t he m arks of t he t hreat t hat
hit t heir body and put a burden on t heir lives( 5).
The t er m sur vivor em er ged in t he 1970’s and
t her e is no consensus in pediat r ic oncology lit er at ur e
about t he definit ion of sur vivor s. Som e aut hors define
t h e t er m as ch ild r en an d ad olescen t s w h o ar e f r ee
fr om t he disease for at least fiv e y ear s, w hile ot her s
use it t o r efer t o pat ient s w ho com plet ed t he t her apy
at least t w o year s ago( 6). I n t his st udy, w e adopt t he
definit ion t hat cancer sur v iv or s ar e people w ho w er e
d i a g n o se d w i t h t h e d i se a se a n d a f f e ct e d b y t h e
diagnosis. The lat t er sit uat ion also includes r elat iv es,
fr ien ds an d car egiv er s( 7 ).
I n i n t e r a ct i o n i n t h e f a m i l y sp h e r e , e a ch
fam ily m em ber ’s healt h and disease st at e affect s and
is af f ect ed by t h e f am ily. Ch ildr en an d adolescen t s,
especially w it h sever e diseases lik e cancer, affect t he
ent ire fam ily and int eract ions am ong it s m em bers. I n
t h is p er sp ect iv e, b ecom in g a p at ien t an d r eceiv in g
healt h care covers a series of event s t hat include t he
int er act ion am ong differ ent people, am ong w hich t he
fam ily, fr iends and healt h pr ofessionals. Each fam ily’s
r ole in t h is pr ocess v ar ies accor din g t o t h e t y pe of
h e a l t h p r o b l e m a n d t h e r e l a t i v e s ’ d e g r e e o f
in v olv em en t( 8 - 9 ).
Th e f am ily r ep r esen t s an im p or t an t sou r ce
o f su p p o r t t o i t s m e m b e r s i n t h e h e a l t h - d i se a se
pr ocess( 8). Consequent ly, it has assum ed t he daily car e
n e e d e d i n t h e t h e r a p e u t i c p r o ce ss, i n t h e h o m e
e n v i r o n m e n t a s w e l l a s d u r i n g h o s p i t a l i z a t i o n
episodes. As a r esult of t he incr easing em phasis on
t he fam ily, t he way it is perceived in t he healt h cont ext
h a s c h a n g e d , m a i n l y s u r p a s s i n g t h e u t i l i t a r i a n
def in it ion s t h at u sed t o be at t r ibu t ed t o t h e f am ily,
w hen it w as seen exclusively as a good for t he pat ient
a n d i t s p r e se n ce w a s co n si d e r e d a n d so m e t i m e s
t oler at ed, especially in healt h car e env ir onm ent s, in
v iew of it s r ole in t h e af f ect iv e sp h er e of t h e sick
r elat iv e’s r ecov er y( 9 ).
Get t in g t o k n ow t h e f am ily ’s ex p er ien ce in
cr ises, t h e ov er load t h e d isease p r ov ok es an d t h e
qualit y of life obt ained in daily r ealit y allow s nur ses,
if aw ar e of t h e st r at egies t h e f am ilies u se, t o of f er
suppor t and discuss t he best alt er nat iv es for coping
w it h t he disease sit uat ion( 10). Thus, t his st udy aim s t o
u n d e r s t a n d h o w p a r e n t s a n d o t h e r r e l a t i v e s o f
childr en and adolescent s w it h cancer ex per ience t he
end of t r eat m ent , in or der t o suppor t t hem t o cope
w it h t his and fut ur e per iods.
STUDY DESI GN
This is a descr ipt ive- explor at or y st udy w it h a
qualit at ive m et hodological appr oach, given t he nat ur e
of t h e st u dy obj ect an d t h e pr oposed obj ect iv e. We
at t em p t ed t o u n d er st an d t h e m ean in g s r elat iv es of
childr en and adolescent s at t r ibut e t o t he ex per ience
of su r v iv in g can cer. Th ese m ean in gs ar e con sider ed
as being const ruct ed in daily life, in t he social relat ions
w it h t heir peer s.
Th e r esear ch w as car r ied ou t at t h e Ch ild
Cancer Out pat ient Clinic of t he Universit y of São Paulo
at Ribeirão Pret o Medical School Hospit al das Clínicas
( HCFMRP- USP) . To com ply w it h Decr ee 196/ 96 by t he
Nat i o n al Heal t h Co u n ci l , t h e r esear ch p r o j ect w as
s u b m i t t e d t o a n d a p p r o v e d b y t h e i n s t i t u t i o n ’ s
Resear ch Et hics Com m it t ee. St udy par t icipant s w er e
t en fam ilies w hose children finished cancer t reat m ent .
Nine m ot her s par t icipat ed, as w ell as t w o fat her s and
t w o sist er s.
Dat a w er e collect ed t h r ou gh sem ist r u ct u r ed
in t er v iew s, obser v at ion an d su r v ey s of pat ien t files.
Sem ist r uct ur ed int er view s w er e used as t he m ain dat a
p a r t i c i p a n t s ’ p e r m i s s i o n . We d e p a r t e d f r o m t h e
prem ise t hat t he hom e cont ext is a spher e t he fam ilies
m ast er bet t er and w ould t hus grant secur it y, fr eedom
a n d g r e a t e r p r i v a cy d u r i n g t h e i n t e r v i e w . I t w a s
o b s e r v e d t h a t t h i s a c t u a l l y o c c u r r e d , a s t h e
par t icipan t s dem on st r at ed m or e t r an qu ilit y at h om e
t han on t he day t hey w er e addr essed in t he hospit al
spher e t o pr esent t he pr oj ect . The int er view s at hom e
allow ed us t o ident ify t he sit uat ion t he fam ilies liv ed
in, offer ing r esour ces for planning int er v ent ions t hat
appr oach ed t h eir r ealit ies.
RESULTS
Based on t he dat a, t w o t hem at ic ax es w er e
ident ified: t he m em or y – w hat has been exper ienced,
and t he present – w hat is exper ienced. These w ill be
pr esen t ed below .
The m em or y – w hat has been ex per ienced
Rem em ber ing t he past , t he pat h t r aveled unt il
t h e cor r ect diagn osis, t h e dif f icu lt ies f aced becau se
t h e ch i l d ’ s h e a l t h st a t u s w o r se n e d , t h e f e a r a n d
u n cer t ain t y en t ailed by t h e diagn osis an d becom in g
f a m i l i a r w i t h t h e n e w r o u t i n e , n e w p e o p l e , n e w
en v ir on m en t s w er e p ar t of t h e r elat iv es’ liv es. Th e
st art of t he disease, w hich is generally abrupt , w it hout
a n u n k n o w n ca u se , w a s i d e n t i f i e d b y sm a l l a n d
r a n d o m a l t e r a t i o n s t h a t g o t w o r se su d d e n l y a n d
rapidly, surprising t he fam ily. The sear ch for t he cor rect
d iag n osis w as p ar t of t h e h ist or y of t h ese p ar en t s
and children. As cancer is a disease w it h non specific
signs and sym pt om s, t his can oft en m ake t he diagnosis
difficult , as obser v ed in t he r epor t below .
I t hought it w as som et hing t ypical of childr en, a silly
pain. Som et im es w e t hink t hat childr en com plain t oo m uch...
Then, in Sept em ber , he st ar t ed t o get r eally bad, he st ar t ed t o
have diar r hea and vom it ing. I t ook him t o t he doct or w ho said he
had w or m s, I gave m edicat ion and he didn’t get bet t er , I w ent
back t o t he doct or w it h him , com plaining of belly ache. This t im e
t hey t old m e it w as gas, I gave m edicat ion and t he boy didn’t get
bet t er, he st art ed t o lose weight ... I ran from one doct or t o anot her
for four m ont hs, t hen, besides t he abdom en, his belly st ar t ed t o
hur t . He vom it ed and had diar r hea ever y day, I t ook him t o t he
doct or w ho asked for a blood t est and said it w as hepat it is... I
insist ed, t his is not hepat it is. When t hey w er e bor n, I t ook all of
m y childr en t o one doct or because, if t her e’s som et hing w r ong,
it ’s easier t o find it w hen t hey get ill ( Fernanda, m ot her of Fábio) .
Recei v i n g t h e n ew s o f a ca n cer d i a g n o si s
t riggers a w at erfall of react ions, feelings and at t it udes
in t he fam ily and child, such as fear, revolt , guilt and
t he sear ch for help.
... They found t hat he had a t um or . We got desper at e.
Our w or ld ended ( I vana, m ot her of I ar a) .
... When w e got t her e, t he doct or s fr om Ribeir ão, t hey
explained ever yt hing about t he t um or , t hat it w as t r eat able...
t hat his hair w ould fall out . I got desper at e, because ever yone
says t hat w ho has t his disease [ cancer ] dies... Oh dear , I got ...
( Joana, m ot her of Junior) .
The par ent s had t o r eor ganize t heir act ivit ies
in or der t o accom pany t heir childr en. Their fam ily w as
r est r u ct u r ed i n t h e so ci a l a n d f i n a n ci a l sen se, a s
m en t ion ed below .
... Som et im es, he [ child] said: dad, st ay wit h m e at t he
hospit al t o do t he t est . No! I can’t st ay... [ low er s his head and
rem ains silent ] . Som et im es his m ot her got angry of course.., and
I .. I can’t st ay, I have t o w or k because I ’m t he only one w ho
w or ks at hom e, if I st ar t t o be absent fr om w or k... I have t o go
t here t o do m y j ob. I t was no use, t hey fired m e anyway... ( Ant ônio,
fat her of Andr é) .
... I used t o go t o m ass w it h t he gir ls ever y Sunday,
but aft er t reat m ent st art ed I didn’t go t o church anym ore, because
she couldn’t spend t im e in places wit h a lot of people... How could
I leav e her behind? I m possible! I st opped going t o chur ch...
( I vana, m ot her of I ar a) .
I n t his st udy, it was per ceived t hat , w hen t he
or g an izat ion f or t h e ch ild ’s car e d em an d s t h at on e
fam ily m em ber gives up his/ her j ob, par t icular ly w hen
t h a t m e m b e r i s f i n a n c i a l l y r e s p o n s i b l e , t h i s
com p r om ises f am ily in com e.
... Unt il Mar ch 2004, I w or ked as a kit chen aid in a
super m ar ket in t he cit y and did som e j obs her e and t her e, as a
m aid... but aft er t he gir l got ill I had t o st op t o t ake car e of m y
daught er . I divor ced her fat her ... it ’s j ust m e... it ’s difficult ... I ’m
st ill unem ployed ( Car la, m ot her of Cínt ia) .
An o t h er si t u at i o n t h e f am i l y m ay h av e t o
co p e w i t h i s d i st a n ci n g a m o n g f a m i l y m e m b e r s.
Par ent s and healt hy childr en go t hr ough separ at ions
due t o t he child’s t r eat m ent , and healt hy siblings are
also affect ed by t he t r eat m ent .
The sist er had t o go t hr ough t he psychologist , dur ing
her [ sick daught er ] t r eat m ent , because her sist er felt r ej ect ed...
I only t ook car e of her [ sick daught er ] ... Her sist er used t o st ay
w it h her aunt or gr andm ot her because, t hen, I used t o live at t he
back of m y m ot her - in- law ’s house ( Car la, m ot her of Cínt ia) .
His brot her suffered, he didn’t underst and it very well...
He saw ever yone cr ying and asked: m om , is Fábio gonna die? I
w as ver y ser ious, t hat he w ould have t o st ay in hospit al t o get
bet t er , he st ayed w it h m y m ot her - in- law ( Fer nanda, m ot her of
Fábio).
Th e a d v e r s e e f f e c t s , s u r g e r i e s a n d t h e
t her apeut ic plan led t o m om ent s of suffer ing and pain
for t he child, t he adolescent s and close per sons. The
possibilit ies of su ccessf u l t r eat m en t , as w ell as t h e
r isks and sequelae of t he t her apy r aised t he par ent s’
aw ar eness as t hey w ent t hr ough t he differ ent phases
of differ ent pr ot ocols. The par ent s per ceiv ed t hat t he
disease, t he t reat m ent and t he hospit alizat ions w ould
ent ail not only biological, but also social repercussions.
Th e p o s s i b i l i t i e s o f s e q u e l a e , d u e t o t h e t u m o r
r esect ion or t he new s about t he r esect ion of one or
m o r e o r g a n s , c a u s e d m o m e n t s o f c r i s e s i n t h e
p ar en t s.
He w as skinny, because of t he chem o, t he per son’s
or ganism get s w eak...because, at fir st , t hey have t o give a ver y
st r ong dr ug, he got skinny and soon his hair st ar t ed t o fall out , I
j ust know t hat t his per iod w as ver y difficult ... he used t o vom it ...
[ Fat her low er s t he head and dr ies his t ear s] ( Ant ônio, fat her of
André) .
She suffered a lot from t he chem o, all of her hair fell out
aft er a w eek, she got bald, r eally sick, t hat par t caused gr eat
suffer ing... The sur ger y t ook alm ost 10 hour s... I t hink it w as Dr .
Célio who arrived and said t hat it wasn’t j ust t he kidney t hey t ook
out , no... it w as t he bladder , a piece of t he pancr eas... it w as a
shock... I even got sick at t he hospit al, I had a ner vous cr isis, m y
hand and m out h got t w ist ed, ev er y t hing... ( Car la, m ot her of
Cínt ia) .
The r epor t s show t hat t he init ial phase of t he
d i sease an d t h e t r eat m en t cau sed ch an g es i n t h e
p a r e n t s a n d r e l a t i v e s ’ l i v e s . A l l p a r t i c i p a n t s
r em em ber ed t he pr ocess of sear ching t he diagnosis,
t he t raj ect ory unt il t hey received t he cor r ect diagnosis,
as w ell as t he effect of t he disease’s confir m at ion in
t h e i r l i v e s . Th u s , t h e p a r e n t s s t a r t e d t o o b t a i n
k n o w l e d g e a b o u t c a n c e r, t h e t r e a t m e n t a n d i t s
co n seq u en ces.
The pr esent – w hat is ex per ienced
The st udy par t icipant s m ent ioned j oy at t he
end of t he t r eat m ent but , at t he sam e t im e, r epor t ed
on t heir feelings and concer ns r elat ed t o t he child’s
phy sical condit ion and adapt at ions t o t he sequelae.
When w e got t he new s, it caused gr eat j oy for m e and
for him . But I ’m ver y scar ed and I t ake gr eat car e of him . I don’t
let him play soccer , because im agine if a ball hit s him on t he sit e
of t he surgery. Because he’s got t hat hole in his belly t o pee. He’s
not allow ed t o sw im , because he m ay cat ch an infect ion. He’s
alw ays got infect ions. Now he’s t aking ant ibiot ics and got bet t er .
But you never know . He t akes car e of his cat het er s, ever y 4
hour s. He doesn’t sleep w ell, and neit her do I , because I ’m afr aid
t hat he w on’t w ake up alone. He doesn’t w alk ar ound w it hout a
shirt . He’s alw ays saying t hat he’s different from ot hers. Because
I alw ays call him , t o use t he cat het er w hile he’s playing, t he
ot her s don’t st op playing soccer t o do t hat , he for get s. When you
have t o wake him up at night ... oh dear! He wakes up angry... it ’s
very t iresom e, for him and for m e. But we t alk a lot , it ’s bet t er like
t hat t han being dead ( Helena, sist er of Hugo) .
Th e n eed f or sp ecial car e an d f ollow - u p of
m edical guidelines in t he first m ont hs aft er t he end of
t r eat m ent w er e follow ed by t he par ent s, including car e
t h at w as n o lon g er n ecessar y, in or d er t o p r ev en t
sit uat ions t hat could change t he child’s healt h st at e.
The doct or said t hat his life is nor m al now , t hat he’s
cur ed. Of cour se he can’t have a nor m al life, because he can’t
dr ink t ap w at er ... But I m aint ain som e car e, I give him boiled
w at er , I soak t he fr uit in w at er w it h bleach. That car e is not
difficult ... I t ’s even good... I buy bot t le w at er , w hich seem s t o be
good... But I boil t he w at er never t heless. Juice w it h boiled w at er
only...he [ son] t akes boiled w at er t o dr ink in school... it ’s never
t oo m uch... I go t o bed and t hink: does he have t o t ake m edicat ion
t oday? ( Eva, m ot her of Eduardo) .
A t t e n t i o n a l s o f o c u s e d o n t h e s e q u e l a e
d er i v i n g f r om t h e t r eat m en t . On e m ot h er ’s r ep or t
r ev ealed dissat isfact ion an d con cer n , ack n ow ledgin g
her daught er ’s need t o t ak e m edicat ion for t he r est
of her life.
Ah! I w as happy w hen I got t he new s t hat t r eat m ent
had ended. I was happy... Thanks God! I ’m a bit annoyed because
of t he Benzect azil, because she has t o t ake it for a long t im e... we
get upset . Her bladder w as r em oved, she’ll have t o t ake t he
Benzect azil for prot ect ion against cont am inat ions. The doct or t old
m e t hat it ’s quit e r isky, t hat , if she doesn’t t ake it , she m ay cat ch
a sever virus t hat causes deat h. Her bladder was rem oved because
t he t um or w as r oot ed in, it had alr eady affect ed and t hey also
r em oved a piece of t he pancr eas. We get upset .... it ’s har d. I
haven’t been int er est ed in asking yet ... w hat it ’s going t o be like
fr om now on. I know t her e’s t he t om ogr aphy, t est s ever y six
m ont h. I t hink m y head is r eally like... and w e don’t ask ( Car la,
m ot her of Cínt ia) .
Th e s e q u e l a e i n t e r f e r e i n t h e s u r v i v o r s ’
qualit y of life. The m ain concern seem s t o be w it h t he
self - im ag e, sp ecif ically w it h t h e h air loss, p er h ap s
because t his m ak es t he child or adolescent differ ent
f r om ot h er s.
Today, she’s got som e defect s in her head, som e holes,
defect s, she’s asham ed, I feel sor r y for her ... [ st ar t s t o cr y] she
doesn’t like t o go out , is concer ned... I t ell her it w ill gr ow , but it
w on’t . I have t o t hink t hat t he hair is t he least of all concer ns. I
hope I ’ll never have t o go t hr ough t his again. Som et im es I ’m
confident , but ot her t im es... Som et im es I cry a lot ... She couldn’t
bear t he disease again physically, nor em ot ionally. Neit her could
I ... ( I vana, m ot her of I ar a) .
The per iod aft er t r eat m ent is also m ar ked by
con f lict in g f eelin gs. Th e par en t s ex pr ess t h at , af t er
t hey got over t he cr isis of t he disease and t r eat m ent ,
t hey survive, st ill feeling affect ed by different feelings
a n d p er so n a l a n d em o t i o n a l ch a n g es. An y sev er e
d isease con f r on t s t h e ch ild an d h is/ h er f am ily w it h
su f f er in g an d ex pect at ion s, pr ov ok in g pr of ou n d an d
d i s t i n c t i v e c h a n g e s i n t h e i r l i v e s( 1 1 ). Th e s t u d y
part icipant s also report ed t his sit uat ion, as highlight ed
b elow .
Oh dear, w hen I r eceived t he new s t hat t he
t r eat m ent w as ov er. . . [ low er s her head and r em ains
silen t ] t h at ’s w h en I st ar t ed a difficu lt ph ase in m y
lif e, w h ich I am in u n t il t oday, I don ’t k n ow w h at ’s
g on n a h ap p en . I d on ’t m an ag e t o d eal w it h it , it ’s
har d. Now , for m e, som et hing has changed, I feel it .
I t a l k e d w i t h h i s p sy ch o l o g i st , I ’ m n o t t h e sa m e
p er son . . . I ’m in secu r e, w it h ou t p at ien ce, I n eed t o
lear n how t o deal w it h t his pr oblem . Som et im es I have
s l e e p l e s s n i g h t s . I w a l k a r o u n d t h e h o u s e a n d
r em em ber t h e t h in gs t h at h appen ed. I can see t h e
day of t he sur ger y ex act ly. . . m y hear t feels heav y.
Like w hat it w as befor e. I t ’s over ... I know , but I can’t
cope with it. Why do I keep on rem em bering? Can you understand...
I t ’s com plicat ed. I t ’s com plicat ed t o deal w it h it . Som e days I
w ake up feeling w ell. I sit her on m y ow n and st ar t t o r em em ber .
I t w asn’t m eant t o be like t his... it ’s over ! I t ’s over ! I should be
feeling calm er now but I don’t ... I keep on living t hat , I feel
scar ed, I cr y , suffer . I t hink it ’s difficult . . . That ’s not good. .
( Fernanda, m ot her of Fábio) .
The par ent s t r y t o ov er com e t heir difficult ies
by r est ar t ing act ivit ies t hey used t o do and w hich w er e
int er r upt ed by t he t r eat m ent .
Now we t ry t o go t o t he count ryside, go out , have fun t o
t r y and for get . But you can’t put it off, t he t hought alw ays com es
up... We go t o m ass every Sunday... Maybe we’ll go t o t he beach...
t r avel... w e couldn’t do t hat befor e. I w ant t o do t hings, occupy
m y head ( Eva, m ot her of Eduardo) .
Th e par en t s ex per ien ce t h e dist an cin g f r om
t h e h ealt h t eam t h at t ook car e of t h e ch ild d u r in g
t r eat m ent in a dual way, t hat is, t hey m ent ion t hat , at
t he sam e t im e as t hey celebr at e t he dischar ge, t hey
f eel t h r eat en ed by t h e absen ce of t h e h ospit al an d
t he t eam , w hich w as r eady t o deliver car e in case of
p r ob lem s. Th ey in d icat e t h at t h ey lose t h e g r ou n d
beneat h t heir feet w hen t he child is dischar ged and
quest ion t heir capacit y t o cope w it h t he child’s healt h
st at e w hen t he t r eat m ent ends.
I t ake him t o hospit al ever y 3 w eeks and he’ll have t o
do a r esonance ever y 3 m ont hs... I don’t know ver y w ell now ... if
he get s a fever his r esist ance decr eases... he did not explain it
w ell [ physician] I ’m gonna have t o t ake him t her e [ hospit al] see
t hat m ess again.... Test , m edicat ion... he had a cough t hese days,
I t ook him t o t he healt h st at ion her e and t hey gave him ser um ,
but it ’s har d because nobody know s him her e, t hey don’t know
w hat happened... I ’m in doubt , he can only eat st r ong t hings...
( Débora, m ot her of Daniel) .
The par ent s acknow ledge t hat t he new r out ine
of t heir childr en’s t im e and car e m ar ks a new phase,
a period aft er t he disease. They recognize t he fam ilies
t h a t a r e s t a r t i n g t h e t r e a t m e n t a n d s h o w t h e i r
av ailabilit y t o help t hem , as pr esent ed below .
I look at t he out pat ient clinic of cur ed pat ient s... I saw
m any people w ho have been cur ed for a long t im e and did not
have anyt hing anym or e... it ’s good... st aff is needed t o help t he
m ot hers... When I go back t here I see m ore fam ilies going t hrough
w hat I ’ve been t hr ough... Per haps it w ould be good if w e m et ...
( Débora, m ot her of Daniel) .
Now , it ’s t he out pat ient clinic of cur ed pat ient s. The
fir st year , he goes t her e ever y six w eeks for a check- up, t hen, in
t he second year , he goes ever y t w o m ont hs and t he int er vals get
lar ger . He’ll never lose cont act w it h t he hospit al ( Ant ônio, fat her
of André) .
To m o v e b e y o n d t h e p h y si ca l , so ci a l a n d
em ot ion al b ar r ier s lef t b y t h e d isease, t h e p ar en t s
look for suppor t fr om t he fam ily, fr iends, t he healt h
t eam and r eligion, as show n by t he r epor t s below .
Th e p eop le f r om ch u r ch h elp a lot , b ecau se I ’m
unem ployed. They help wit h basic m aint enance packages, t hey’re
even building a house for m e and t he childr en, t hen w e’ll m ove
out of her e, because it ’s not possible... The social w or ker t her e
fr om t he hospit al also helps a lot , w henever I need it , she helps
... ( Débora, m ot her of Daniel) .
My sist er helped m e a lot , m y m ot her t oo because
t reat m ent is not easy... and now we don’t know very well... ( Carla,
m ot her of Cínt ia) .
I f God cur ed him he w on’t let it com e back, I have
fait h... Today, I believe t hat m y son is cur ed, God cur ed t he boy.
Once I discussed w it h t he doct or , because it w asn’t t he doct or
who cured him , but God who m ade t he doct or cure him ... ( Débora,
m ot her of Daniel) .
Pay in g at t en t ion t o t h e qu alit y of t h e cu r e,
cancer im plies paying at t ent ion t o qualit y of life aft er
t he t herapy, in t he shor t , m edium and long t er m . The
need for cont inuous follow - up of t he sur vivor s by t he
healt h t eam is evidenced by t he possibilit y of det ect ing
sit uat ions t hat dem and int er v ent ion.
DI SCUSSI ON
Surviving cancer cont ains dist inct dim ensions,
t h er e is t h e ph y sical an d t h e m en t al cu r e, in w h ich
t h e p h y si cal co r r esp o n d s t o t h e cu r e v er i f i ed an d
announced by t he healt h t eam , w hile t he m ent al r efer s
t o t h e cu r e ob t ain ed w h en f am ily m em b er s f in d or
find back t heir ident it y( 5). I n m ost cases, t he w ay t he
p at ien t an d t h e f am ily ex p er ien ce t h e d isease is a
u n iqu e ev en t , a per son al ex per ien ce, r esu lt in g fr om
each h u m an b ein g ’s h ist or y, w ay of lif e, b ein g an d
r elat in g , w h ich can on ly b e u n d er st ood w it h in t h at
person’s ow n hist ory( 12). For people w ho have a child
w it h a can cer d iag n osis, it seem s t o b e d if f icu lt t o
i n co r p o r a t e t h e d i se a se i n t o t h e f a m i l y r o u t i n e ,
alt hough t hey or ganize t hem selv es for daily v isit s t o
t h e ou t pat ien t clin ic, deal w it h t h e com plicat ion s of
t he disease or t he t reat m ent it self w hich m aint ain t he
f a m i l y a l e r t , a n d c o p e w i t h t h e h o s p i t a l i z a t i o n
per iods( 1 3 ). Th e t r eat m en t per iod can en t ail posit iv e
and negat ive effect s for t he fam ily m em ber s, like for
t h e h ealt h y siblin gs f or ex am ple. Th ey can pr esen t
feelings of concer n, pr ot ect ion, or also anger, anxiet y
and guilt w it h r espect t o t he t r eat m ent of t heir sick
si b l i n g . Th e si b l i n g s n e e d a t t e n t i o n , e n co u r a g i n g
parent s t o dedicat e m ore t im e t o t heir healt hy childr en
a n d m a i n l y e x p l a n a t i o n s a b o u t t h e d i s e a s e a n d
t r eat m ent( 14).
Fam ilies w it h ex per ien ces of liv in g w it h an d
s u r v i v i n g c a n c e r g o t h r o u g h p e r i o d s o f
t r a n s f o r m a t i o n s , w i t h m o m e n t s o f g r e a t e r
d iseq u ilib r iu m in t h e f am ily sy st em d u r in g cer t ain
p h ases, w h i ch can b e co n n ect ed w i t h t h e d i sease
phases or w it h landm ar ks in child developm ent . These
p er i o d s d em an d car e p l an n i n g f r o m n u r si n g , w i t h
specificit ies and indiv idualit ies( 15).
Th e c o n s t a n t t h r e a t o f r e l a p s e a n d t h e
possibilit y of r est ar t in g a n ew t r eat m en t r ev eal t h e
feeling of insecur it y in r elat iv es of cancer sur v iv or s.
I n v iew of t he com plex it y and aggr essiv eness of t he
disease and t r eat m ent , cancer sur vivor s st ar t t o fight
in t he at t em pt t o posit iv ely conquer t he coping w it h
m em or ies of t he past , seeking a new m om ent of life,
a lif e w it h ou t t h e d isease, or b et t er, lif e af t er t h e
disease( 1 6 ). Th ey ar e con cer n ed w it h t h eir ch ildr en ’s
cour se, if t hey w ill over com e t he lim it s t hat life it self
i m p o se s, i f t h e y w i l l f a ce d i f f i cu l t i e s d u e t o t h e
sequelae. As t o t he qualit y of sur v iv al, it should not
on ly be based on biom edical m easu r es, bu t also on
crit eria relat ed t o t he exist ent ial dim ension. Therefore,
bet t er know ledge is needed about t his dim ension and,
m or e specifically, about t he im plicat ions for childr en
and adolescent s w ho exper ience t he changes der iving
fr om t he disease and t r eat m ent pr ocess( 17). I n or der
t o cont inue t he sur v iv or s’ follow - up, t her e is a need
t o e st a b l i sh a l o n g - t e r m r e l a t i o n b e t w e e n h e a l t h
pr ofessionals and pat ient s. Cont inuit y is defined( 18) as
a w ord used inst ead of longit udinalit y, w hich is defined
as “ in d iv id u als’ or g r ou p s’ d ealin g w it h g r ow t h an d
changes dur ing a num ber of y ear s”. This longit udinal
r elat ion b et w een t h e t eam an d t h e su r v iv or allow s
for a gr eat er pr obabilit y of r ecognizing t he pat ient s’
pr oblem s, by a t eam w ho is fam iliar w it h t hem . Nur ses
sh ou ld in t egr ally par t icipat e in t h is con t in u ou s car e
process for t he children and t heir fam ilies, in order t o
st im ulat e and help t o cr eat e t he capacit y in par ent s
an d r elat iv es t o face t h e diagn osis, t r eat m en t , cu r e
an d su r v iv al pr ocess.
CONCLUSI ON
We consider t hat sur viving cancer r epr esent s
t h e gr ou n d f am ilies cov er ed w it h t h eir ch ildr en an d
adolescent s w ho finished cancer t r eat m ent . Sur v iv ing
also r efer s t o a healt h st at e t hat m ay be accom panied
by sequ elae fr om t h e t r eat m en t , w h ich can em er ge
ear ly or in t he long t er m , but in one w ay or anot her
p o sse ss a d i st i n ct i v e m e a n i n g f o r t h e r e l a t i v e s,
ch ild r en an d ad olescen t s. I n or d er t o p lan n u r sin g
int er v ent ions t hat involv e t he fam ily, t her e is a need
t o u n der st an d t h e ex per ien ce of t h e f am ilies w h ose
ch ild r en an d ad olescen t s f in ish ed t h e t r eat m en t in
or der t o, dur ing a lat er st age, help dur ing t he pr ocess
of coping w it h and adapt ing t o t his new per iod.
Su r v i v i n g t h e t r e a t m e n t i s c o m p l e x a n d
d ep en d s o n t h e f am i l i es’ o b j ect i v e an d su b j ect i v e
aspect s. Th e ex per ien ce of en din g t h e t r eat m en t is
r elat ed w it h coping and w it h t he adapt at ion in t he w ay
t he r elat ives lived w it h t he disease and t he t r eat m ent ,
in t h e w ay t h ey at t em pt ed t o r ecov er t h eir r ou t in e
and planned t he fut ur e. We indicat e som e int er vent ion
a n d a d o l e sce n t s w h o f i n i sh e d ca n ce r t r e a t m e n t :
t r ai n i n g an d p r ep ar at i on of h eal t h p r of essi on al s –
sp e ci a l i za t i o n co u r se s, p e r m a n e n t e d u ca t i o n a n d
u n der gr adu at e pr ogr am s t h em selv es sh ou ld in clu de
c o n t e n t s a b o u t t h e f u n c t i o n a l a n d p s y c h o s o c i a l
c o n s e q u e n c e s o f c a n c e r a n d i t s t r e a t m e n t ,
em p h asi zi n g p r ev en t i o n an d car e f o r l at e ef f ect s;
co n st i t u t i o n o f a m u l t i p r o f e ssi o n a l t e a m f o r ca r e
d eliv er y t o ch ild r en , ad olescen t s an d r elat iv es w h o
su r v i v ed can cer t r eat m en t ; co n st i t u t i o n o f p ar en t
g r ou p s f or or ien t at ion an d ex p er ien ce ex ch an g e –
pr om ot ing m om ent s of m eet ing w it h fam ily m em ber s
t o t alk ab ou t t h eir d ou b t s an d d if f icu lt ies; closin g
par t ner ships w it h com panies and t he com m unit y w it h
a v iew t o t he sur v iv or s’ t r aining and inclusion in t he
j ob m ar k et ; g et t in g t o k n ow each f am ily ’s r ealit y.
Ther efor e, hom e visit s should be m ade t o get t o know
t he realit y t he relat ives live. The specialized oncology
ser v ice sh ou ld get in v olv ed w it h t h e pr im ar y h ealt h
car e sect or – b y p r ov id in g a cou n t er - r ef er r al let t er
w it h each child’s or adolescent ’s hist or y, highlight ing
t he possible signs and sy m pt om s of r elapse and lat e
effect s, involving t he survivors in t he decision m aking
and t r eat m ent planning pr ocess.
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