MANAGI NG CANCER AND I TS I NTERCURRENCES: THE FAMI LY
DECI DI N G TO SEEK EMERGEN CY CARE FOR THE CHI LD
1Mair a Deguer Misk o2
Regina Szy lit Bousso3
Misko MD, Bousso RS. Managing cancer and it s int er cur r ences: t he fam ily deciding t o seek em er gency car e for t he child. Rev Lat ino- am Enfer m agem 2 0 0 7 j aneir o- fev er eir o; 1 5 ( 1 ) : 4 8 - 5 4 .
Th is st u dy aim ed t o u n der st an d h ow t h e f am ily of a ch ild w it h can cer m an ages t h e illn ess an d it s int er cur r ences at hom e, and how it m akes t he decision of t aking t he child t o an em er gency car e ser v ice. Or al
Hist or y w as u sed as t h e m et h odological st r at egy an d dat a an aly sis w as based on t h e “ Fam ily Man agem en t St y le Fr am ew or k ” . Par t icipant s w er e six m ot her s bet w een 2 8 and 4 7 y ear s old, w ho w er e ex per iencing t heir
ch ild’s can cer t r eat m en t . Th e possible n eed for em er gen cy car e is in cor por at ed in t o t h e fam ily r ou t in e as a r esou r ce t o m an ag e t h e illn ess w h en ev er it g oes b ey on d t h e m ot h er ’s cap acit y t o k eep con t r ol ov er t h e sym pt om s, w hich is per m eat ed by suffer ing, der ived fr om t he uncer t aint ies t his cr eat es. Helping t he m ot her t o
develop skills t o get st r onger and r educe t he suffer ing r esult ing fr om t he sit uat ions t hat gener at e uncer t aint ies and insecur it ies in her daily life w it h t he child w it h cancer is a challenge.
DESCRI PTORS: pediat r ics; fam ily ; oncology nur sing; child
GEREN CI A DEL CÁN CER Y DE SUS I N TERCURREN CI AS: LA FAMI LI A QUE DECI DE
SOBRE LA BÚSQUEDA DE LA ATEN CI ÓN DE EMERGEN CI A PARA EL N I Ñ O
Est e est udio buscó ent ender cóm o hace la fam ilia del niño con el cáncer par a m anej ar la enfer m edad y sus int er cur r encias en la casa, y cóm o hace la fam ilia par a t om ar la decisión de llevar al niño a un ser vicio de em er gencia. La hist or ia or al fue ut ilizada com o est r at egia m et odológica, y el análisis de los dat os fue basada
en el “ Fam ily Managem ent St yle Fr am ew or k” . Los par t icipant es er an seis m adr es, con edad ent r e 28 y 47 años, que v iv enciaban el t r at am ient o del cáncer de su niño. La posible necesidad de la at ención de em er gencia se
incor por a dent r o de la r ut ina de la fam ilia com o r ecur so par a m anej ar la enfer m edad siem pr e que v ay a m ás allá de la capacidad de la m adr e en guar dar el cont r ol sobr e los sínt om as, lo que es r odeado de sufr im ient o,
debido a las incer t idum br es gener adas por esa sit uación. Ay udar a la m adr e en el desar r ollo de habilidades p a r a se f o r t a l ecer y r ed u ci r el su f r i m i en t o r esu l t a n t e d e l a s si t u a ci o n es q u e g en er a n i n cer t i d u m b r es y
insegur idades en su vida de cada día con el niño con el cáncer es un desafío.
DESCRI PTORES: pediat r ía; fam ilia; en fer m er ía on cológica; n iñ o
MANEJANDO O CÂNCER E SUAS I NTERCORRÊNCI AS: A FAMÍ LI A DECI DI NDO
PELA BUSCA AO ATEN DI MEN TO DE EMERGÊN CI AS PARA O FI LHO
Est e t r abalho obj et iv ou com pr eender com o a fam ília da cr iança com câncer m anej a a doença e suas
int er cor r ências em casa e com o decide lev á- la par a um at endim ent o de em er gência. Par a t ant o, ut ilizou- se a Hist ória Oral com o est rat égia m et odológica e a análise dos dados foi baseada no m odelo t eórico “ Fam ily Managem ent
St yle Fram ework” . Para isso, part iciparam seis m ães, com idade ent re 28 e 47 anos, que vivenciavam o t rat am ent o de câncer do filho. A possível necessidade do at endim ent o de em ergências é incorporada ao cot idiano da fam ília com o um r ecur so par a m anej ar a doença quando est a v ai além da capacidade da m ãe de m ant er o cont r ole
sobr e os sint om as, o que é per m eado por sofr im ent o decor r ent e das incer t ezas que ist o ger a. Aj udar a m ãe a desenv olv er habilidades par a se for t alecer , m inim izando o sofr im ent o conseqüent e das sit uações que causam
incert ezas e inseguranças em seu cot idiano com o filho com câncer é um desafio.
DESCRI TORES: pediat r ia; f am ília; en f er m agem on cológica; cr ian ça
1 St udy ext ract ed from Mast er’s Thesis; 2 M.Sc. in Pediat ric Nursing, RN at t he Em ergency Service Unit of t he I nst it ut o da Criança, e- m ail: m airadm @bol.com .br; 3 RN, PhD, Pr ofessor, Univer sit y of São Paulo College of Nur sing, e- m ail: szylit @usp.br
I NTRODUCTI ON
A
sig n if ican t n u m b er of ch ild r en in Br azil h av e been st r u ck by can cer, af f ect in g t h eir f am iliesa n d st r e n g t h e n i n g t h e d i se a se ’ s e p i d e m i o l o g i ca l
im port ance, w hich has also given rise t o st udies about
it s diagnost ic and t her apeut ic aspect s.
The confir m at ion of t he disease causes gr eat
suffering t o parent s. The fam ily w ill have t o live w it h
t he uncer t aint y of t he pr ognosis and t he consequences
of an ag g r essiv e an d p ain f u l t r eat m en t , p r od u cin g
f eelin g s of an g u ish an d n eg at ion s t h at m ak e t h em
seek confir m at ion of t he diagnosis( 1- 2).
D e sp i t e t e ch n o l o g i ca l a d v a n ce s i n ca n ce r
t r e a t m e n t - t h r o u g h t h e a r r i v a l o f n e w d r u g s ,
r a d i o t h e r a p y a n d su r g e r i e s - a n d t h e si g n i f i ca n t
i n cr e a se i n t h e cu r e a n d su r v i v a l p e r ce n t a g e s o f
children affect ed by t his disease, t reat m ent is st ill quit e
uncom for t able, inv asiv e and t hr eat ening; it pr ov ok es
a r apid an d in t en se ch an ge in pat ien t s’ liv es an d a
d i seq u i l i b r i u m i n f a m i l y r o u t i n es a n d d y n a m i cs( 3 ). Fam ilies w ill have t o face m any difficult ies dur ing t he
en t i r e t r eat m en t . Th ey w i l l h av e t o seek w ay s o f
h e l p i n g t h e i r ch i l d t o o v e r co m e t h e si t u a t i o n s o f
p h y s i c a l a n d e m o t i o n a l s u f f e r i n g c a u s e d b y t h e
disease and t o deal w it h t he pr oblem of m aint aining a
healt hy int er act ion am ong r elat iv es( 4).
Fa m i l i e s f a c e p r o b l e m s d e r i v i n g f r o m
t r eat m ent , as t he aggr essive t her apy pr ovokes sever al
unw ant ed collat eral effect s, besides anguish, pain and
s u f f e r i n g b e c a u s e t h e y n e e d t o l i v e w i t h t h e
p ossib ilit ies of r elap se, sy m p t om ex acer b at ion an d
deat h of t he child.
Th u s, can cer an d it s t h er ap y can lead t h e
ch ild t o em er gen cy con dit ion s. A can cer em er gen cy
can be defined as a clinical condit ion result ing from a
st r u ct u r al or m et abolic ch an ge cau sed by can cer or
i t s t r e a t m e n t , r e q u i r i n g i m m e d i a t e m e d i c a l
int er v ent ions t o pr ev ent deat h or sev er e per m anent
dam age( 5 - 6 ).
Lit er at ur e pr esent s t he im por t ance of get t ing
t o k n o w t h e n e e d s o f f a m i l y m e m b e r s w h o
a cco m p a n y t h e i r r e l a t i v e s a t h o sp i t a l e m e r g e n cy
se ct o r s. Re f e r e n ce i s m a d e t o e m e r g e n cy se ct o r
e n v i r o n m e n t s, a f f i r m i n g t h a t t h e se a r e n o r m a l l y
ch aot ic an d t h at , on t h ese occasion s, adm in ist er in g
sit u at ion s t h at r epr esen t a r isk t o lif e an d h an dlin g
cr ises ar e pr ior it ies. Thank s t o t his par t icular it y, t he
a c c o m p a n y i n g r e l a t i v e s ’ n e e d s e n d u p b e i n g
neglect ed. I t is also em phasized t hat fam ily m em ber s
w ho accom pany t heir r elat ives in t he cr it ical st age of
a disease, at em er gency unit s, should be consider ed
as car e unit s, and t hat t her e ar e as of yet few st udies
about t heir needs dur ing t his per iod( 7).
Pa r e n t s ’ e m o t i o n a l b u r d e n w h e n t h e y
ex per ience em er gency car e for t heir child should not
be for got t en, lack ing infor m at ion and com m unicat ion
t o m it igat e t heir em ot ions. Thus, nur ses need abilit y
t o d eal w it h p ar en t s an d ad eq u at e com m u n icat iv e
sk ills for each sit uat ion( 8).
Th i s st u d y a i m e d t o u n d e r st a n d h o w t h e
fam ilies of children w it h cancer cope w it h t he disease
an d it s p r ob lem s at h om e an d h ow t h ey m ak e t h e
decision t o t ak e t hem t o em er gency car e.
METHODOLOGY
To r each t h e st u d y ob j ect iv e, a q u alit at iv e
a p p r o a c h w a s u s e d , w i t h O r a l H i s t o r y a s t h e
m et h odological st r at egy. Th is r esou r ce is u sed as a
w ay of capt ur ing t he ex per iences of people w ho ar e
w illing t o t alk about aspect s of t heir life, including t he
com m it m ent t o st ick t o t he social cont ext . I t is applied
t o e l a b o r a t e d o cu m e n t s, f i l e s a n d st u d i e s a b o u t
p eo p l e’s so ci al l i f e. Or al Hi st o r y d ep ar t s f r o m t h e
pr em ise about t he past as som et hing t hat cont inues
int o t he pr esent and w hose hist or ical pr ocess is not
f i n i s h e d ; m o r e o v e r, i t g r a n t s a m e a n i n g t o t h e
w i t n e sse s’ a n d r e a d e r s’ so ci a l l i f e , m a k i n g t h e m
u n d e r st a n d t h e h i st o r i ca l se q u e n ce a n d i d e n t i f y
t hem selv es as par t of it . I n Oral Hist or y, t he w it ness
i s c o n s i d e r e d a “ c o l l a b o r a t o r ” , w h i c h i m p l i e s a
r elat ion sh ip of af f in it y bet w een t h e in t er v iew ee an d
t he int er v iew er( 9).
I n t his st udy, Them at ic Oral Hist or y was used,
w hich at t em pt s t o clar ify or obt ain t he int er v iew ee’s
o p i n i o n a b o u t a sp e ci f i c i ssu e o r p r e se t t h e m e .
Obj ect iv it y is dir ect : it addr essed ex t er nal, obj ect iv e,
f act u al, t h em at ic q u est ion s an d it s sp ecif ic n at u r e
pr ov ides dif f er en t ch ar act er ist ics( 9 ).
Get t ing t o k now people’s act ions w hile t hey
ex p er i en ce cer t ai n si t u at i o n s m ak es i t p o ssi b l e t o
an t i cip at e som e car e act i on s, all ow i n g f or a m or e
ef f ect iv e an d act iv e p ar t icip at ion in car e, in clu d in g
t he possibilit y of int er vent ion in case of r isk( 10). Th is r esear ch pr oj ect w as su bm it t ed t o t h e
Et h ics Com m it t ee f or Resear ch Pr oj ect An aly sis at
t he Universit y of São Paulo School of Medicine Hospit al
2004. I nit ially, w e r equest ed t he m ot her s’ agr eem ent
t o p a r t i ci p a t e , i n w r i t i n g , t h r o u g h t h e Fr e e a n d
I nfor m ed Consent Ter m , w hich cont ained infor m at ion
about t he r esear ch, t hat int er view s w ould be r ecor ded
and t hat anony m it y w as guar ant eed.
Aft er t heir accept ance, int er view s st ar t ed and
dat a w er e collect ed bet w een Oct ober 2004 and Mar ch
2 0 0 5 . Six m ot h er s p ar t icip at ed , w h o accom p an ied
t h ei r ch i l d ’ s ca n cer t r ea t m en t . Th e ch i l d r en w er e
r egist er ed at a public hospit al in São Paulo t hat is a
r efer r al cent er for child cancer t r eat m ent . Their ages
r anged fr om 28 t o 47 year s. One m ot her w as a w idow
and five w er e m ar r ied. They accom panied t he childr en
d u r i n g r o u t i n e co n su l t at i o n s, em er g en cy car e an d
ch em ot h er apy an d r adiot h er apy t r eat m en t .
These fam ilies w ere cont act ed w hile t heir child
r e ce i v e d ca r e a t t h e e m e r g e n cy u n i t . Th e y w e r e
infor m ed about t he obj ect ive of t he pr oj ect and w er e
asked t o par t icipat e volunt ar ily. Aft er t hey agr eed, a
day, t im e and place w er e set for holding t he int er view,
alw ay s r esp ect in g t h e f am ily ’s ch oice. I n it ially, w e
u sed an in st r u m en t w it h iden t if icat ion dat a an d t h e
follow in g gu idin g qu est ion s: Tell m e: w h at is it lik e
for y ou t o liv e w it h a child suffer ing fr om cancer at
hom e? What is it lik e for y ou t o look for em er gency
car e? How do y ou decide t o com e t o t he em er gency
sect or ? Who decides t o com e?
I nt er v iew s w er e t ape- r ecor ded and t ook one
hour on t he av er age. Analy sis inv olv ed t hr ee st eps:
1 ) T r a n scr i p t i o n : i s t h e r i g o r o u s t r an sf er o f t h e
int erview , aft er repeat ed careful list ening t o t he ent ire
cont ent s, from t ape t o paper, including all of it s lapses,
errors, hesit at ions, repet it ions, m isunderst andings and
t he int erview er’s quest ions; 2) Te x t u a liz a t ion : is t he
st ep w hen quest ions ar e r em ov ed and added t o t he
a n s w e r s , t r a n s f e r r i n g t h e e n t i r e t e x t t o t h e
collaborat or, w ho assum es t he first person as t he only
ch ar act er. I n t h is st ep, t h e n ar r at iv e is r eor gan ized
so as t o b ecom e clear er. Nex t , t h e “ Vit al Ton e” is
chosen, w hich is a phr ase t o int r oduce t he nar r at ive,
a s i t r e p r e s e n t s i t s m o r a l s y n t h e s i s , a n d 3 )
T r a n scr e a t i o n : d u r in g t h is st ep , t h e t est im on y is
pr ocessed in a br oader sense, by inv er t ing t he or der
o f p a r a g r a p h s ; r e m o v i n g o r a d d i n g w o r d s a n d
phrases; using language inst rum ent s like punct uat ion,
ellipsis and int er j ect ions, w it h a v iew t o achiev ing a
bet t er under st anding of t he t ex t .
Th i s r e c r e a t e s t h e a t m o s p h e r e o f t h e
int er view , at t em pt ing t o pr esent t he w or ld of feelings
pr ov oked by t his cont act t o t he r eader, w hich w ould
n ot h appen if t h e t est im on y w er e r epr odu ced w or d
for w or d. The aut hor infer s in t he t ext , w hich w ill be
r e w o r k e d se v e r a l t i m e s a n d sh o u l d co m p l y w i t h
ag r eem en t s r each ed w i t h t h e co l l ab o r at o r. I n t h i s
pr ocedur e, it is vit al for t he collabor at or t o legit im ize
t he int er v iew( 9).
Af t er r ead in g each t est im ony, w e ob ser v ed
t h at t h e n ar r at iv es ex p r essed a p ecu liar m ean in g ,
per ceiv ing point s t hese hist or ies had in com m on and
w h i ch co u l d b e b e t t e r e x p l o r e d w i t h a v i e w t o a
br oader under st anding of t heir cont ent s.
D a t a a n a l y s i s a d o p t e d t h e “ Fa m i l y
M a n a g e m e n t S t y l e Fr a m e w o r k ” ( FM S F) a s a
t h e o r e t i ca l m o d e l , w h i ch i d e n t i f i e s co g n i t i v e a n d
b e h a v i o r a l a s p e c t s t h a t c o m p r i s e t h e f a m i l i e s ’
ex p er ien ces in cop in g w it h t h eir ch ild r en ’s ch r on ic
d i s e a s e . Th i s m o d e l i n c l u d e s t h r e e c o n c e p t u a l
com ponent s: D e f in it ion of t h e Sit u a t ion div ided in
four concept ual t hem es: “ I dent it y of t he child”, “ View
of t h e d isease”, “ I d eas ab ou t t h e cap acit y t o cop e
w it h t h e disease” an d “ Mu t u alit y bet w een par en t s”.
Cop in g Be h a v ior s, div ided in: “ Par ent s’ philosophy ”
a n d “ Co p i n g a p p r o a c h ” . P e r c e p t i o n o f
Co n se q u e n ce s, su b d iv id ed in : “ Fam ily f ocu s” an d
“ Ex pect at ions about t he fut ur e”( 11).
RESULTS AND DI SCUSSI ON
Based o n t h e t h eo r et i cal m o d el p r esen t ed
abov e, nex t , t he r esult s obt ained fr om t he m ot her s’
t est im on ies ar e pr esen t ed.
The fir st concept ual com ponent of t he m odel
is t he D e f in it io n o f t h e sit u a t io n , w hich r efer s t o
t he m eaning and t he w ay par ent s see t he child and
t he disease. These are key aspect s for t heir definit ion
of t he sit uat ion, w hich influence t he t ypes of behaviors
used t o cope w it h t he disease and incor por at e it int o
t he fam ily r out ine( 11).
Th i s c o m p o n e n t c o n t a i n s t h e Ch i l d ’ s
ide n t it y , in w hich t he fam ily, aft er t he im pact of t he
diagnosis, st art s t o perceive t hat t he child w ill undergo
a long t r eat m ent , w hich m ay cause consequences. I n
view of t r eat m ent r eact ions, childr en st ar t t o be seen
as fr agile and vulner able t o sit uat ions t hat used t o be
par t of daily r ealit y, and m ay pr esent pr oblem s; hence,
m ot her s st ar t t o define t hem as special and differ ent
fr om ot her childr en.
... w hen you ar e fam iliar w it h t he t r eat m ent r out ine of
about t hem , t hey’r e like boxes of sur pr ises and ( ...) t hey m ay
need t o com e t o t he em ergency care unit . ( C1)
The m ot her s st ar t t o per ceive t hat t he disease
c a n a f f e c t t h e c h i l d ’ s p h y s i c a l a b i l i t i e s a n d ,
c o n s e q u e n t l y, p s y c h o s o c i a l a d j u s t m e n t a n d ,
som et im es, ev en t h e fam ily ’s.
People cam e t o visit us, I didn’t like it w hen t hey kept
on asking what m y daught er had, why she was bald ( ...) I want ed
t hem t o know all t hat alr eady. I lost m any fr iends at t hat t im e, I
didn’t leave m y house anym or e. ( C5)
An ot h er aspect t o be t ak en in t o accou n t is
t he V ie w of t h e dise a se , w hich cov er s t he par ent s’
set of b elief s ab ou t t h e d iag n osis, cau se, sev er it y,
pr ognosis and cour se of t he disease( 11).
The collaborat ors go back t o t he st art of t he
disease t raj ect ory, which was generally abrupt , wit hout
any known cause. From t hat point onwards, t hey st art
t o elaborat e definit ions for t he disease and spend a lot
of t heir t im e t rying t o underst and it . According t o t hem ,
can cer is a dest r u ct iv e disease, w it h an aggr essiv e
t r eat m en t t h at en t ails a ser ies of con sequ en ces f or
t h e ch i l d , cr eat i n g su f f er i n g an d , o f t en , r eq u i r i n g
frequent help from hospit als. The ent ire course of t he
disease is sur r ounded w it h uncer t aint ies.
I t ell him t hat w e cannot com par e C. w it h us, he’s
differ ent , ( ...) cancer is not like a flue ... ( C3)
Tr eat m en t is seen as ex t r em ely ag g r essiv e
an d able t o im pose addit ion al clin ical com plicat ion s
for t he child. At t he sam e t im e, it is seen as som et hing
necessar y and a w ay of achiev ing cur e.
This t reat m ent is like, really crazy, t he chem o is t errible!
But w e have t o do it . ( C5)
I n t h is t raj ect or y, t h e n eed t o com e t o t h e
e m e r g e n cy se r v i ce r e p r e se n t s u n ce r t a i n t y a b o u t
t r eat m ent and t he disease cour se as, for t he m ot her,
seek ing em er gency car e r epr esent s t hat t he disease
is not under cont r ol and t hat t r eat m ent does not have
ef f ect iv e r esu lt s.
... The im pr ession I had w henever I had t o br ing her
her e ( em er gency unit - EU) w as t hat t r eat m ent w asn’t w or king.
How could I t r ust t r eat m ent if she w as at t he EU and needed
ot her r esour ces? ( C1)
The adopt ed t heor et ical m odel also addr esses
I d e a s a b o u t t h e c a p a c i t y t o c o p e w i t h t h e
dise a se , w hich r efer s t o t he int er act ion bet w een t he
f am ily ’s id eas ab ou t assessm en t of d isease cop in g
d e m a n d s a n d i t s o w n a b i l i t i e s t o p e r f o r m t h e se
act iv it ies( 11).
... I ’m r eally scar ed of dealing w it h A. I guess t hat ,
because she’s m y daught er , I ’m even afr aid t o t ouch her . I don’t
t ake any m easur e w it h her w hen I ’m on m y ow n, I ’m scar ed, it ’s
as if I couldn’t do anyt hing. ( C1)
Aft er t he diagnosis, t he childr en are put under
s u r v e i l l a n c e a n d c a n n o l o n g e r p e r f o r m c e r t a i n
a ct i v i t i e s t h a t u se d t o b e p a r t o f t h e i r r o u t i n e s.
Par t icular ly t he m ot her s st ar t a sur v eillance schem e
of t heir sick child on a daily basis, seeking signs t hat
som et h in g w r on g m ay b e h ap p en in g an d t r y in g t o
av oid any k ind of pr oblem or accident .
Aft er he st ar t ed chem ot her apy, I st ar t ed t o value lit t le
changes he pr esent ed m or e. I w as alw ays looking for signs t hat
could lead t o a com plicat ion. ( ...) I do not usually let him alone for
anyt hing. ( C3)
Mot h er s liv in g w it h ch ild r en w it h can cer at
hom e dev elop st r at egies t o feel m or e secur e t o cope
w it h t h e su r p r ises of t h e d isease. Th ey u se t h ese
st r a t eg i es w h en t h ey p er cei v e t h a t t h ey a r e i n a
sit uat ion of m inim al secur it y t o per for m t heir r ole of
delivering car e and pr ot ect ing t heir child. When beyond
t hese lim it s, t hey t ur n t o em er gency car e.
I f I per ceive som et hing differ ent , m y fir st r eact ion is
t o br ing her t o t he EU, because I know t hat , w hen I ar r ive her e,
t he doct or s w ill exam ine her unt il t hey find w hat is causing t he
pr oblem and st ar t adequat e t r eat m ent . ( C2)
Fear of t he disease is m or e r elat ed t o lack of
know ledge t han t o t he disease in it self( 12). I n our st udy, one of t he m ot her s ex pr esses t hat t he fact t hat she
does not have know ledge about t he t r eat m ent causes
insecur it y t o st ay at hom e w it h t he child in case of
any behavior al change, m ent ioning fear t hat t he child
m ay die. This m akes her seek help t hr ough em er gency
ca r e.
Th e se a r ch f o r i n f o r m a t i o n i s o n e o f t h e
st r at egies m ot h er s u se t o m an age t o per f or m t h eir
r o l e w i t h t h e d e si r e d r e sp o n si b i l i t y l e v e l . Acr o ss
t r e a t m e n t , p a r e n t s a n d r e l a t i v e s a c c u m u l a t e
exper iences t hat m ake t hem m or e capable and secur e
f o r d eci si o n m ak i n g i n case o f p o ssi b l e p r o b l em s.
When par ent s have t he necessar y infor m at ion for car e
d eliv er y t o t h eir ch ild , t h ey can p r ov id e car e in a
calm er w ay( 13).
I know w hen she’s fine or not based ( ...) on w hat her
doct or says. ( ...) , accor ding t o her , I know w hat t o do and how t o
act w it h D., as I alr eady know t he w hole t r eat m ent , it becom es
easier t o t ake care of her at hom e. ( C4)
Mot h er s also p er ceiv e t h eir h osp it alizat ion
e x p e r i e n c e s w i t h t h e c h i l d a n d t h e s y m p t o m s
per ceiv ed at hom e, besides conv er sat ions w it h ot her
par ent s, as r esour ces t hat facilit at e decision m ak ing
( ...) I per ceived t hat her liver had gr ow n, because one
side of her belly w as bigger t han t he ot her , w hich had alr edy
happened at t he st ar t of t r eat m ent , t hat ’s w hy I knew t hat it
could be som e pr oblem r elat ed t o t he liver . ( C2)
Th e m ot h er ’s assessm en t of disease copin g
d em an d s also con t ain s t h e n eed f or p h y sician s t o
obt ain pr ecise infor m at ion about w hat happens w it h
t h e ch i l d a t h o m e . Th e m o t h e r p e r ce i v e s sh e i s
com m it t ed an d ab le t o collect d at a ab ou t t h e ch ild
and pr esent t hem t o t he m edical t eam w it h pr ecision.
... I have t o obser ve because, as t he doct or her self
says, I ’m t he one w ho spends m or e t im e w it h him and I have t o
per ceive w hat ’s changing t o be able t o pass t hat infor m at ion t o
t he m edical t eam and help in t r eat m ent . ( C3)
Th e ch ild r en ar e f u n d am en t al r esou r ces in
st r at egies t o achiev e t his dem and. Besides guar ding
t h e m , t h e m o t h e r s a l so a sk q u e st i o n s t o o b t a i n
i n f o r m at i o n ab o u t w h at m ay b e h ap p en i n g , u si n g
st rat egies like: perceiving differences in t heir children
and asking t hem quest ions t o obt ain furt her inform at ion
about t hem . To t he ext ent t hat parent s becom e at t ent ive
t o t heir children and aware of t he sym pt om s t hey can
present , or perceive changes in t heir general sit uat ion,
such as t em per at ur e changes, t hey can decide about
t he act ual need t o seek addit ional m edical help( 14).
I f I per ceived t hat she w as a bit sad, I undr essed her ,
gave her a bat h, asked if she w as feeling w ell. I w as t alking and
playing w it h her but , in fact , I w as exam ining her body ... ( C5)
Anot her t hem e in t his concept ual com ponent
is t h e P a r e n t s’ m u t u a l i t y , w h ich ad d r esses t h eir
per cept ions in t er m s of how t hey shar e, com plem ent
o r h a v e d i scr e p a n t v i e w o n h o w t h e y d e f i n e a n d
m anage t he disease sit uat ion( 11).
On e collab or at or r ep or t s h er ex p er ien ce in
shar ing t he disease experience w it h her husband and
h igh ligh t s t h e im por t an ce of h er h u sban d’s su ppor t
w hen t he child needs em er gency car e.
Whenever w e had t o com e her ( em er gency unit ) , she
cam e playing and, t his t im e, she w as all sleepy and w eak on m y
lap w hen w e ar r ived. The guar ds at t he r ecept ion desk did not
want m y husband t o com e in wit h m e ( ...) ; I was desperat e about
seeing m y daught er in t hose condit ions, I didn’t w ant t o st ay
alone w it h her, I needed m y husband’s support at t hat t im e. ( C2)
Th e m o t h e r s’ n a r r a t i v e s p o i n t t o w a r d s a
discr epancy in how par ent s per ceive and m anage t he
disease, w it h different ideas, m ainly w hen t hey decide
t o t ak e t h e ch ild t o t h e em er gen cy u n it w h en t h ey
per ceiv e t hat som et hing m ay be w r ong.
Accor ding t o t he m ot her s, t heir husbands ar e
m or e t oler an t t o t h e sy m pt om s appear in g at h om e
and believe t hat t he child can r ecov er. The m ot her s,
on t h e ot h er h an d , b ecau se t h ey k n ow t h e ef f ect s
and r isks of t r eat m ent bet t er, do not accept t o st ay at
hom e w it h t heir child because, as t hey feel insecur e,
t h ey d o n ot w an t t o t ak e t h e r isk t h at som et h in g
happens t hey cannot cont r ol alone.
My husband does not always agree with m e ( ...) I believe
t hat , in his head, it ’s not very clear yet t hat t he girl is ill. ( C4)
I r un t o t he doct or w it h m y daught er at any t im e, m y
h u sb an d is calm er , h e w an t s t o p ost p on e ev er y t h in g u n t il
t om or r ow . ( ...) I f it depends on him , he w ait s, he w ait s for a
fever , w ait s for anot her , he t hinks it w ill pass, t hat giving any
m edicine w ill solve t he pr oblem ... ( C5)
Mot her s t ake car e of t he childr en, accom pany
t r e a t m e n t , c a r r y o u t a l l c a r e a n d m a s t e r t h e
inform at ion, besides m aking decisions about w hat w ill
be done w it h t heir childr en.
... w hen w e have t o com e her e, gener ally, I decide,
because I r em ain in hospit al w it h him and accom pany him t o t he
doct or , I know about ever yt hing. ( C3)
Anot her concept ual com ponent of t his m odel
is Co p in g b e h a v io r , w h ich r ef er s t o t h e pr in ciples
su p p o r t i n g t h e f am i l y ’s b eh av i o r t o co p e w i t h t h e
disease and it s abilit y t o develop a r out ine t o m anage
disease- r elat ed dem ands. I t includes t w o concept ual
t h e m e s : P a r e n t s ’ p h i l o s o p h y a n d Co p i n g
a p p r o a c h .
The Pa r e n t s’ ph ilosoph y cor r esponds t o t he
p r in cip les t h eir b eh av ior s ar e b ased on , cov er in g :
o b j e ct i v e s, p r i o r i t i e s, v a l u e s g u i d i n g t h e g e n e r a l
ap p r o ach an d sp eci f i c st r at eg i es t o co p e w i t h t h e
disease; Co p in g a p p r o a ch , r elat ed t o t h e par en t s’
assessm ent of t he spher e t hr ough w hich t hey m anage
t o dev elop a r out ine and st r at egies t o cope w it h t he
disease and incor por at e it int o fam ily life( 11).
I n t h e l i g h t o f t h ei r ch i l d r en ’s can cer, t h e
m ot hers in t his st udy assum e a sense of responsibilit y
w it h a v iew t o pr ov iding t he best car e t o t heir child
t oget her wit h t he t eam . They live wit h uncert aint ies about
w hen a new cr isis can occur. Each day, t hey look for
signs t hat can indicat e som e new com plicat ion t hat m ay
em er g e. Th ey f eel o b l i g ed t o k n o w t h e ef f ect s o f
t reat m ent , so t hat t hey can know what it is and how t o
keep wat ch, in order t o recognize all possible sym pt om s.
Mo r e o v e r, t h e y a t t e m p t t o a n t i ci p a t e p o ssi b l e
co m p l i ca t i o n s, b ei n g r ea d y t o a ct a t a n y t i m e, i f
necessary. They see t hem selves as “ key pieces” during
t he ent ire disease process. When t he m ot her is faced
wit h t he im possibilit y of cure, she seeks t he child’s
I n an o t h er st u d y, t h e r el at i v es m en t i o n ed
t hat , as t he disease adv anced and t he pr obabilit y of
deat h got near, car e focused on avoiding or m inim izing
t he child’s pain( 15).
She is r eceiving all m edicat ion int r avenously and w e
ar e get t ing r easonable anest hesia; she has m anaged t o be OK,
but I w ant t o est ablish analgesia w it h or al m edicat ion, so t hat w e
can go hom e. ( C1)
Som e changes occur in fam ily life, w it h a view
t o finding w ay s of coping w it h t he disease. Ther e is
t h e f ear t h at som et h in g w ill h ap p en w it h t h e ch ild
w it hout any body not icing it .
Som e of ou r collab or at or s m en t ion ed t h ey
left t h eir bags r eady in case t h ey h ad t o t ak e t h eir
children t o t he em ergency unit ; t his rout ine decreases
t he st r ess of coping w it h t he disease at hom e. To t he
ext ent t hat t hey incor por at e t he possibilit y of seeking
em er gen cy car e, t h ey f eel m or e com f or t able n ot t o
let t he sit uat ion get w or se at hom e. Em er gency car e
is incor por at ed int o t he child’s t r eat m ent .
I t sh ou ld also b e em p h asized t h at , ev en if
e m e r g e n c y c a r e i s i n c o r p o r a t e d i n t o t h e c h i l d ’ s
t r eat m en t as a p ossib ilit y an d r ef er en ce f or b et t er
coping during t he course of t he disease, it ent ails t he
m eaning of possible w orsening, lack of disease cont rol
and, consequent ly, fear, anx iet y and uncer t aint ies.
Th e l a st co n ce p t u a l co m p o n e n t i s t h e
Pe r ce p t io n o f Co n se q u e n ce s, w h ich r ef er s t o t h e
dim ension t he disease occupies in fam ily life, and it s
current and fut ure reflect ion on t he fut ure of fam ily life.
The concept ual t hem e Fam ily focus com prises
t he parent s’ assessm ent of t he balance bet ween disease
coping and ot her aspect s of fam ily life( 11).
Th e n a r r a t i v e s p r e s e n t h o w t h e m o t h e r
assesses t he dim ension or im port ance of t he disease.
Her ow n life is focused on t he sick child, and she st art s
t o lif e in f u n ct ion of h im / h er ; sh e t h in k s abou t t h e
fam ily, ot her children, her husband, but t he priorit y is
her sick child. Mot her s w ho used t o go out t o w or k
gav e up t heir j ob t o be able t o cont inue t heir child’s
t r eat m en t .
I ’m on leav e fr om m y j ob for ov er a y ear , alm ost
exclusively t aking car e of m y daught er . ( C1)
Mo t h er s’ w h o se ch i l d r en ar e n o t r ecei v i n g
t r eat m en t , b u t o n l y u n d er g o i n g ex am i n at i o n s an d
con t r ol ap p oin t m en t s, h ig h lig h t t h at t h e r esu lt s of
rout ine t est s becom e t he focus in disease coping. This
sit u at ion is accom p an ied b y g r eat ex p ect at ion an d
u n cer t ai n t i es, as t h e p o ssi b i l i t y o f a r el ap se o r a
m et ast asis is alw ay s near.
Yest er day , sh e h ad t o be h ospit alized h er e at t h e
em er gency unit ( ...) a m ovie w ent t hr ough m y head: t he w hole
t r eat m ent j ust cam e back. ( ...) I alw ays t hink she’s cur ed, but I
also know t hat t his disease can com e back. ( C2)
I n t h e m ot h er s’ h ist or ies, t h e Ex p e ct a t io n
a b o u t t h e f u t u r e i s r e l a t e d t o t h e f e a r o f n o t
m anaging t o t reat t he children, w hich w ould result in
t h e i r d e a t h . An i m p o r t a n t ch a r a ct e r i st i c i n t h e i r
n ar r at iv es is t h at t h e sear ch f or em er gen cy car e is
r elat ed t o t he loss of cont r ol over t he disease and t he
d iscov er y of a n ew com p licat ion . Th is f act r em in d s
t hem of t he severit y of t he disease and t heir children’s
fr agilit y t o t his enem y.
When I decide t o t ake her t o hospit al, I ’m afr aid t hat
som et hing m ay happen ( ...) afr aid she’ll die. ( C4)
Man ag i n g t o st ay at h o m e w i t h t h e ch i l d ,
w it hout sy m pt om s, behav ior al changes and sur pr ises
is a sign t h at ( s) h e is w ell an d t h at is t h e f am ily ’s
ex p ect at ion .
FI NAL CONSI DERATI ONS
Th e ap p ear an ce of t h e d isease m ak es t h e
fam ily open a space for flexibilit y, w it h r oom for new
t ask s, such as sur veillance, and new ev ent s, such as
t h e sear ch f or em er g en cy car e. Th u s, cop in g w it h
can cer at h om e in v olv es act iv it ies lik e: m on it or in g
t h e ch ild ’s b eh av ior, w at ch in g ou t f or sy m p t om s of
t h e disease an d r egu lat in g act iv it ies w it h a v iew t o
d e cr e a si n g r i sk s. Co p i n g i n v o l v e s o b j e ct i v e s t h a t
priorit ize alert ness t o t he disease and it s signs, w it h a
v iew t o pr eser v ing t he child’s life w it h less suffer ing.
Th e m ot h er s becom e t h or ou gh ly r espon sible for t h e
p r ev en t ion of com p licat ion s an d f or t h eir ch ild r en ’s
w ell- b ein g .
Se v e r a l m o t i v e s w e r e m e n t i o n e d f o r h e r
d e ci si o n t o se e k e m e r g e n cy ca r e . No m a t t e r t h e
m ot iv e, t h e f in al ob j ect iv e is alw ay s t o g u ar an t ee
rapid care for t he child, w it h a view t o m inim izing t he
possibilit y of com plicat ions and pr eser v ing t he child’s
l i f e. Sh e al so l o o k s f o r i n f o r m at i o n ab o u t w h at i s
h a p p e n i n g w i t h t h e ch i l d a n d t h e r e a so n f o r t h e
p r ob l em . Wh en seek i n g em er g en cy car e, sh e al so
at t em pt s t o gu ar an t ee t h at sh e act ed cor r ect ly. Her
com p et en ce t o t ak e car e of t h e ch ild n eed s t o b e
ack n ow l ed g ed .
Th e m o t h e r s i n d i c a t e t h a t t h e i r d a i l y
exper iences w it h t he child at hom e ar e per m eat ed by
n e w sy m p t o m s, w h i ch ca n a p p e a r i n f u n ct i o n o f
t r ea t m en t a n d t h e d i sea se i t sel f. Mo r eo v er, w h en
s y m p t o m s a p p e a r, t h e m o t h e r s a r e f r e q u e n t l y
con f r on t ed w it h t h is u n cer t ain t y. Th eir d ou b t s ar e
r elat ed t o how t o deal w it h t he sym pt om s and t o t heir
in decision abou t t h e r igh t t im e t o look f or ex t er n al
help, such as em er gency car e.
Thus, t he possible need for em er gency car e
is in cor p or at ed in t o t h e f am ily ’s d aily r ealit y as a
resource t o cope wit h t he disease when it goes beyond
t he m ot hers’ capacit y t o m aint ain t he sym pt om s under
cont rol. However, t hey express t he t raum at ic em ot ions
t h ey ex per ien ce w h en t h ey r em em ber t h e in ciden t s
t hat occurred during t heir visit s t o t he em ergency unit .
Ther efor e, t hey use all possible effor t s t o t r eat t heir
childr en at hom e. Nev er t heless, w hen t he sy m pt om s
cont inue or cr eat e m ist r ust about t he possibilit y t hat
som et h in g n ot v isible m ay be h appen in g, t h eir f ir st
at t it ude is t o go t he em ergency unit . They need t o feel
com fort able t o st ay at hom e and t ake care of t he child.
Nur ses’ under st anding of t his int ense cancer
j ou r n ey, per m eat ed b y t h e u n cer t ain t y pr esen t ed in
t h e m o t h e r s’ n a r r a t i v e s, a f f e ct s ca r e d e l i v e r y t o
fam ilies. Un der st an ding t he m ot her s’ per spect iv e on
specific event s t hey experience w it h t he child at hom e
a n d t h e m e a n i n g sh e a t t r i b u t e s t o t h e se e v e n t s,
r elat ing t hem w it h t he level of uncer t aint y t hey produce,
can help t o plan adequat e int er vent ions for each fam ily.
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