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www.jpnim.com Open Access
Jou nal o Pedia ic and Neona al Indi idualized Medicine 2014;3(1):e030112
doi: 10.7363/030112
Recei ed: 2013 Dec 10; e ised: 2014 Feb 11; accep ed: 2014 Feb 12; publica ion: 2014 Ap 01
Ca ing o child en wi h b ain
umo s in an oncology wa d: a
phenomenologic-he meneu ic s udy
Chia a Fio e i1, Rosapia Lau o-G o o2, Debo a T ingali3, E a M.
Padilla-Muñoz4, Massimo Papini3
1Depa men o Neu osciences, Psychology, D ug Resea ch and Child Heal h, Uni e si y o Flo ence, I aly
2Depa men o Heal h Sciences, Uni e si y o Flo ence, I aly
3Lapo Associa ion, Flo ence, I aly
4Depa men o Pe sonali y, E alua ion and Psychological T ea men , Uni e si y o Se ille, Spain
Abs ac
B ain umo s a e he mos common o m o solid umo s in childhood and
a e cha ac e ized by an unce ain p ognosis, o en meaning umo in asi e
su gical p ocedu es in he i s s eps o he pa ien ’s ea men . In a Pedia ic
Oncology Wa d, child en wi h b ain umo s a e conside ed a challenge o
heal h p o essionals, due o he na u e o he ela ionship be ween he child,
he pa en s, and he heal h ca e p o ide s in he ini ial phase o he pa ien ’s
illness. He e we p esen a phenomenologic-he meneu ic s udy, de eloped
in he Oncology Wa d o a Hospi al in Sou he n Spain. All he ca egi e s
o he Wa d unde wen in e iews conce ning hei expe ience in ca ing o
child en wi h b ain umo s. In e iews we e eco ded and ansc ibed wi h
he consen o he pa icipan s and we e analyzed by con en hemes. In he
p esen pape , we ocus on he expe iences conce ning he i s mee ing o
he p o essionals wi h he child en and hei amilies and he p incipal c i ical
issues ela ed o he communica ion o he diagnosis.
Keywo ds
B ain umo s, s a , pedia ic iangle, pedia ic psycho-oncology,
communica ion o he diagnos is, g oup dynamics.
Co esponding au ho
Rosapia Lau o-G o o, Depa men o Heal h Sciences, Uni e si y o Flo ence, I aly; email:
[email p o ec ed].
How o ci e
Fio e i C, Lau o-G o o R, T ingali D, Padilla-Muñoz EM, Papini M. Ca ing o child en wi h b ain
umo s in an oncology wa d: a phenomenologic-he meneu ic s udy. J Pedia Neona Indi idual Med.
2014;3(1):e030112. doi: 10.7363/030112.
O iginal a icle
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Fio e i • Lau o-G o o • T ingali • Padilla-Muñoz • Papini
In oduc ion
B ain umo s in childhood a e cha ac e ized by
se e al peculia i ies, bo h om he poin o iew o
hei ca e and o he psychological and emo ional
implica ions. When compa ed o he case o he
disease’s onse in adul hood, in he case o any
pedia ic pa ien , he ca e pa hway un olds h ough
he icissi udes o he so called “pedia ic iangle”
[1] including a i s e ices he heal h ca e s a , he
child o adolescen and he pa en s. This complexi y
ac o is especially ele an in he case o ch onic
o se e e illness, such as a umo . As shown in he
las wo decades [2-4], he coping s a egies ha he
amily pu s in place o deal wi h he disease and i s
in e nal dynamics wi hin he pedia ic iangle a e
undamen al o he pa ien ’s psychological balance
and o he achie emen o he he apeu ic goals [1].
The complexi y o he dynamics wi hin he pedia ic
iangle is well known in pedia ic psycho-oncology
[5-9]. A pa ien who con ac s he ins i u ion has
a a ie y o needs ha ela e o his illness, which
he ins i u ion esponds o wi h p o essionals, each
one wi h his echnical skills. E e yone is implici ly
and ine i ably accep ing o pose and e u n pa ial
ques ions and pa ial answe s [1].
The heme o he communica ion o he diagnosis
in pedia ic oncology has been ea ed ex ensi ely in
ela ion o i s consequences on he psycho-emo ional
balance o he pa ien and his amily [10]. In he
case o a se ious illness, he communica ion o he
diagnosis mus be ca ied ou by he medical s a
by aking in o accoun some impo an a iables:
p ima ily, he deg ee o awa eness o he pa en s
abou p e iously communica ed in o ma ion and
wha hey eally wan o know abou he disease
[11]. The pedia ician is essen ial in he p ocess
o communica ion as he’s he one who will lay he
ounda ion o he he apeu ic alliance by managing
he in o ma ion, by accep ing he ou pou ing
o he pa en s and by s uc u ing oge he wi h
hem he he apeu ic plan [12, 13]. Addi ionally
Buckman [11] sugges s ha in he “ideal” mode o
communica ion o he diagnosis, he pa en s can
dissol e hei doub s and ind he mos app op ia e
way o communica e he news o he child as
well while being ollowed and suppo ed by he
pedia ician.
The e is nowadays g owing consensus ha he
child wi h cance equi es e ec i e communica ion
wi h espec o his heal h condi ion [14]. I has
also been obse ed ha , especially in he ini ial
phase o hospi aliza ion, pedia ic pa ien s exp ess
a s ong need o be in ol ed in ca e planning and
in he ea men s [5, 7]. Howe e less a en ion has
been paid o he s a ing phase o he he apeu ic
ela ionship wi hin he pedia ic iangle. I we
conside he ele ance o he expe ience ha he
child and he amily de elop in he con ac wi h
he hospi al en i onmen and he expe sys em,
i is necessa y o analyze he emo ional dynamics
and he p ac ices ha a e adop ed in his phase
and hei implica ions in he cou se o ea men
[15, 14]. B ain umo dese es a deepe ocus, as
his is a pa icula o m o childhood cance ha
in ol es addi ional p oblems in he ini ial phase o
he he apeu ic ela ionship. I is a kind o limi -case
and he e o e some o he dynamics ha cha ac e ize
he ini ial phase o he he apeu ic p ocess can be
obse ed in his con ex wi h g ea e i idness and
cla i y.
In an umo s o he cen al ne ous sys em a e
he mos common o m o solid umo s in childhood
and he second mos di used malignan o m a e
leukemia in he pedia ic age, wi h a mean incidence
on 3.3 cases o e 100,000 child en [16]. The
concep o deg ee o malignancy o hese o ms is
peculia , as umo s ha appea o be less agg essi e
can be placed in b ain a eas ha a e c ucial o li e
suppo o can p e en no mal de elopmen . The
p ognosis is also e y unce ain, anging om 20%
o 70% su i al 5 yea s pos onse acco ding o he
is ochemical cha ac e iza ion o he disease. These
pa hologies a e ex emely he e ogeneous, a ac ha ,
aken oge he wi h he pauci y o he e idence in
he li e a u e, implies in he p o essional awa eness
ha “e e y case is a single case (...) Diseases a e
all di e en , all child en a e di e en , pa en s a e
all di e en ... So you can imagine he si ua ion...
a mys e y om beginning o end!” o say i in he
wo ds o one o ou in e iewed pedia icians [14].
The unce ain p ognosis and he a iabili y
o his ype o cance a e e en mo e di icul o
manage, in p ac ical and emo ional e ms, a he
ime o communica ion o he diagnosis and in
he ini ial phase o he he apeu ic ela ionship.
B ain umo s a e o en cha ac e ized by an acu e
episode a onse and he symp oms a diagnosis
a e gene ally connec ed o he aise o in ac anial
p essu e, wi h headaches, omi ing and nausea
[17]. We mus he e o e assume ha in mos cases
in he un o 24 o 48 hou s he pa en s o child en
who look absolu ely no mal a e o ced o ace he
diagnosis o a pa hology ha deeply h ea ens he
psycho-physical de elopmen o he child, i no
also his su i al. The child could be obliged o
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unde go a su gical in e en ion ha may las om
6 o 10 hou s wi h an inde e minable ou come, and
om which he child migh eme ge in a s a e o
deep emo ional al e a ion. Wha is equi ed om
he pa en s, a his poin and in he space o a ew
momen s, is o us and ely on he medical eam
upon which he su i al o hei child en and he
p ese a ion o hei u u e depends.
In o he cases, he onse o he disease can be slow
and insidious, hus exposing he amily membe s o
a long phase o unce ain y, du ing which he o en
eassu ing esponse o he heal h ca e p o essionals
can lead o episodes o d ama ic unde es ima ion o
he symp oms – o en sub le and di icul o ead –
on which pa en s y o con ey, wi h inc easing
anxie y, o medical a en ion. The diagnosis, al eady
d ama ic in i sel , is accep ed wi h ex a age and
su e ing, coming om he expe ience o being no
belie ed, and wi h he anguish o ha ing los ime
and possibly aluable chances o ca e. In assuming
he ca e o hese cases, he heal h p o essional s a
exposes i sel o e y s ong emo ional d i s ha a e
o en o be aced in he con ex o a s ic con igui y
be ween child en, pa en s, and s a membe s, unde
he p essu e o hea y o ganiza ional demands and in
he need o assuming esponsibili y o e y di icul
decision making p ocesses.
The p esen s udy
The p esen s udy, designed acco ding o he
phenomenologic-he meneu ic app oach [18, 19],
in ends o explo e he in e pe sonal and ela ional
dimensions in he p ocess o aking ca e o a child
a ec ed by a b ain umo , aking in o accoun bo h
he ex u e o human ela ionships which build he
he apeu ic ac i i y o he s a by p omo ing o
hinde ing i , and he de elopmen o he pe sonal
dimension in he con ex o he p o essional bond
wi h he pa ien and his amily membe s [20-23].
We ocus on he pe cep ions o he p o essionals
abou he incoming pa ien s and hei amilies, we
analyze he p ac ices ha a e ins an ia ed in his
ini ial phase o he he apeu ic p ocess and we
enligh en he emo ional eac ions o he a ious
s a membe s acing hese e y complex medical
and ela ional si ua ions. Be ween Feb ua y and
July 2010 a esea ch plan was de eloped and
implemen ed in collabo a ion wi h he s a o
he pedia ic Oncology Wa d o he Vi gen del
Rocío Uni e si a y Hospi al, Se illa (Spain). The
s udy ocuses on he expe ience o he i s con ac
be ween he pa ien and his amily membe s and he
heal h ca e p o essionals in he Wa d. The ac ion-
esea ch was designed in he con ex o a p e iously
es ablished collabo a ion be ween he Depa men
o Heal h Sciences o he Uni e si y o Flo ence and
he “Depa amen o de Pe sonalidad, E aluación y
T a amien o Psicológicos” o Se ille.
Me hods
Design
The esea ch was designed acco ding o a
phenomenologic-he meneu ic app oach. Founda-
ionally, he meneu ic phenomenology explo es he
indi idual’s con ex o cap u e he essence o he
unde lying meaning o li ed expe iences as hey
a e b ough o ligh h ough he expe iences o
indi iduals. The expe ience needs o be desc ibed as
well as in e p e ed o ully unde s and he meaning
o he li ed expe ience [24, 25]. The quali a i e
me hodology, mainly he phenomenological-
he meneu ic me hod, is a p e e ed ool o app oach
and unde s and he needs o child en wi h cance and
hei amilies [6, 23, 26, 27].
Se ing and pa icipan s
The Head o he Depa men o Pedia ic
Oncology assigned o he esea ch eam a se o
heal h ca e p o essionals who usually ook pa in
he he apy o child en a ec ed by b ain umo s,
acco ding o hei di e en speciali ies. They we e
con ac ed indi idually by he esea ch eam and all
ag eed o pa icipa e in he s udy. O e all 19 s a
membe s o he Vi gen del Rocío Hospi al, Se ille,
we e in e iewed: 12 om he Oncology Wa d (2
oncologis s, 1 psychologis , 1 adio he apis , and
8 nu ses), 4 om he Su ge y Wa d (3 nu ses and
1 neu osu geon), 1 psychia is , 1 physia is , and
1 in ensi is om he In ensi e Ca e Uni . In his
pape , we conside only he in e iews wi h he s a
membe s o he Oncology Wa d, due o he ac
ha , as we could no e du ing he s udy, he mul iple
pe spec i es ha eme ge by compa ing he poin s
o iew o s a membe s belonging o di e en
speciali ies and Wa ds dese e a dedica ed analysis.
P ocedu e
The me hodology o he in e en ion was di ided
in o 4 phases.
In he i s explo a i e phase, as a esul o non-
o mal con ac s wi h he Head o he Oncology Wa d
Ca ing o child en wi h b ain umo s in an oncology wa d
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Fio e i • Lau o-G o o • T ingali • Padilla-Muñoz • Papini
o Vi gen del Rocio Hospi al and p elimina ily o
he de elopmen o he analy ical ques ionnai e, he
esea ch eam in e iewed he pa en s o child en
a ec ed by a b ain umo in o de o examine, om
an ex e nal poin o iew, he Wa d p ocedu es and
in e pe sonal dynamics.
In he second phase, in ol ing da a collec ion,
in e iews we e conduc ed by ained esea che s in
an adequa e con ex ha was p o ided by he s a
inside he Hospi al. To p esen he p ojec o he
pa icipan s, in Ma ch 2010 a mee ing was held a
which cla i ica ions on he objec i es, in e en ion,
and p ocedu es we e explained. A his ime, consen
o pa icipa e was also eques ed and ob ained
om all p o essionals. In his phase he indi idual
es imonies o he ope a o s we e collec ed wi h
he aid o a semi-s uc u ed ques ionnai e. This one
can be di ided in o i e hema ic blocks, each o
which includes se e al ques ions p esen ed o he
esponden s, anging o e he subsequen con en s:
esou ces and di icul ies o he p o essional ole,
he i s con ac wi h a child su e ing a b ain umo
and wi h his pa en s, he way o communica ing
he diagnosis, he eelings ha a e expe ienced by
he s a membe s du ing he a ious phases o he
he apeu ic p ocess, he ela ionship be ween he
esponden and he es o his/he colleagues om he
Oncology Wa d, bu also wi h he s a o he o he
Uni s in ol ed in he ea men o b ain umo s and
inally he mos ele an pe sonal episodes connec ed
o he ca e o a child su e ing om b ain umo s.
The in e iews we e conduc ed du ing wo king
hou s in a con es made a ailable by he s a and
sui able o lis ening, wi hou p ese ime limi s. The
in e iews las ed om 35 o 50 minu es. The pas
esea ch expe ience has shown ha a ela ionship
wi h a ca ing pe son is a amewo k ha acili a es
he exp ession o pe sonal eelings and iews and
can suppo he ini ial elabo a ion o he emo ional
con en s o he expe iences. “This me hodology
allows o c ea e a space whe e he ope a o can ind
a way o e-e alua e his expe iences and a sui able
con ex in o de o exp ess eelings and p oblems
ha migh o he wise emain a sou ce o anxie y in
on o which he ope a o is helpless” [28]. Wi h
he consensus o he pa icipan s, in e iews we e
eco ded and ansc ibed.
In he hi d phase, he analysis phase, he
esea ch g oup discussed single in e iews o e
se e al mee ings. An In e p e a i e Phenomenologic
Analysis [29, 30] allowed o he eo ganiza ion
o he ma e ial in o hemes and phenomenologic
ca ego ies. The esea che s educed he complexi y
o da a expe ience h ough igo ous and sys ema ic
analysis [31, 32]. This ype o analysis is based on
he p ocess o gi ing meaning o he wo ld and o he
expe iences o he pa icipan s and seeks o main ain
a ce ain le el o a en ion on wha is di e en , bu
also o balance his expounding exe cise wi h he
commonali ies ha is sha ed ac oss he di e en
es imonies.
In he ou h phase, he eedback phase, he
phenomenological ca ego ies eme ged om he
analysis we e p esen ed o he pa icipan s in a
eedback g oup mee ing held in June 2011, hus
p omo ing an in-dep h discussion o he esul s.
The pu pose o es i u ion o he Wa d was o c ea e
a common space o he uni e sal and indi idual
emo ional e en s and issues ha had eme ged in
o de o imp o e he esponsi eness o amilies wi h
child en a ec ed by cance o he cen al ne ous
sys em.
Findings
A complex pic u e o pe sonal, p o essional,
o ganiza ional, and ins i u ional demands eme ges
om he da a. He e we ocus on hemes conce ning
emo ional and p a ical esou ces and di icul ies
abou he communica ion o he diagnosis o he
child en and hei amilies, all hemes included in
he second block o he in e iew ques ionnai e.
The dimension o u gency
I is e iden in he da a ha ela ing o a child
wi h b ain umo is conside ed o be a e y di icul
ask o he hospi al p o essionals. A c ucial
di icul y a ises i he i s mee ing wi h he ill child
occu s only a e he has unde gone neu osu ge y,
which can ha e a emendous impac on he men al
and psychological unc ioning o he pa ien . In
his case he s a is o ced o s a he ela ionship
wi hou knowing how he child was “be o e.” Many
ope a o s decla ed ha hey would p e e o see he
child be o e he diagnosis. An oncologis old us:
“I would be ideal ha i ( he i s con ac ) happened
du ing he diagnosis. In ha way you a e allowed o
know he child be o e he su ge y. To mee him, o see
him, o know how he p oblem s a ed, and hen o see
him again a e he su ge y and hen begin he ea men .
Howe e he e a e imes when he i s con ac happens
when he child en ha e al eady been ope a ed on, which
is nega i e because we wan o mee hem ea ly on, when
he diagnosis is made” (oncologis 3).
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Nu ses, oo, eel he di icul ies in mee ing he
child en a e he in e en ions:
“They come al eady ope a ed on and you did no mee hem
be o e...” (nu se 3).
Mo eo e , he wo ds epo ed by nu se 3 seems
o speak abou he pe cep ion o a child who is so
di e en a e su ge y, ha he ‘ ue’ child appea
o be los . O en he p o essionals expe ience
he d ama ic change o he child en a e he
in e en ion. A nu se ecalls an episode in which she
had a con e sa ion wi h a child be o e neu osu ge y
and jus he day a e she was no able o ecognise
him. She exp esses he disconce ion when mee ing
a pa ien she knew who came back om su ge y in
a deeply impai ed s a e:
“Pe sonally I was alking wi h he child ha had
come he e he day be o e he su ge y: ‘How a e you?’
‘Well! I’m well!’ And he day a e he was ope a ed on,
hen he wen o in ensi e he apy o a li le bi o ime,
and when he e u ned he e was a low child... wi h a lo
o needs... and hen li le by li le hey begin o alk... I
is di e en om one child o he nex ” (nu se 7).
The need o communica e he diagnosis o he
pa ien and amily membe s in he Depa men o
Oncology be o e he neu osu ge y acqui es a c ucial
impo ance no only om an emo ional poin o iew,
bu also in e ms o o ganiza ion o he he apeu ic
plan. To de ine he goals o pa ien ca e, in he
eyes o he p o essionals i is essen ial o know he
child’s condi ion p io o he physical and cogni i e
impai men associa ed wi h neu osu gical in e en ion.
An oncologis o he s a said in his ega d:
“When we go and see he child who is al eady in
neu osu ge y, his is because we we e no old ha he
was he e, hen we go and he has al eady been ope a ed
he e and we mee he amily and he child, i is o en in
he In ensi e Ca e Uni ... and ou di icul y is o know
how he was be o e and he ex en o which we can make
he child e u n as he was be o e, when you do no
know” (oncologis 1).
The dimension o accep ance
P o essionals also epo ha a e he i s
mee ing wi h he pa en s o child en wi h b ain
umo s, hey a e o en in a s a e o shock a e he
communica ion o he diagnosis. Commen ing
abou hei eac ion, a nu se old us:
“I can ell you my pe sonal expe ience: when you
see hem en e ing o he i s ime and you see hei aces
you unde s and ha you can’ do any hing because in ha
momen he wo ld has u ned agains hem” (nu se 2).
In his si ua ion i is e y di icul o c ea e a
good ela ionship wi h he pa en s. In pa icula ,
nu ses y o es ablish a ela ionship ha is based on
he pa en s’ needs. In he wo ds o he in e iewees
he i s con ac wi h he child and amily mus be
cha ac e ized by accep ance and conside a ion o
he needs. The nu sing s a is a ailable o answe
ques ions and ace he doub s exp essed by he
pa en s; some imes, howe e , a empo a y a i ude
o ebellion mus be accep ed as well:
“Howe e in he i s con ac i is e y di icul o
alk wi h hem. Because, maybe, he pa en s and also
he child a e he e pen up... You mus begin o con ac
hem in a di e en way. Le ’s say ha hey ebell agains
he sys em: all ha you do, hey qua el and discuss wi h
you... No hing seems good o hem, you go he e wi h a
posi i e app oach, you y o help hem, bu hey don’
accep you help, and he e o e i becomes e y di icul .
Many imes a e he i s con ac we commen on he
e ique e ha we ga e hem, an e ique e ha says e.g.
‘This a he is hos ile, p oblema ic,’ and you a e no
awa e o he ac ha he is no ha way. Maybe you a e
no able o alk wi h hem, bu a e a week you al eady see
ha you can alk wi h hem, and maybe hey laugh. I is a
no mal e olu ion! So a he beginning i is complica ed,
bu a e a while hey open up” (nu se 2).
The expe ience o p o ound shock o he amily
membe s and he ini ial ebellion agains he disease
can be accep ed by he nu sing s a hanks o he
ac i a ion o peculia esou ces. Among hese,
he nu ses unde line he impo ance o he wa m,
a ec iona e, and open a i ude ha hey y o
communica e du ing he i s con ac . In ac , when
he child and amily a i e a he uni , s a ecei es
hem wi h an empa hic a i ude and emo ional
a ailabili y, o mee hei needs o com o and
encou agemen . In his ega d, nu se 1 ells an
episode she expe ienced du ing a nigh shi :
“I saw ha hose pa en s could no sleep, and I ook
ad an age o he si ua ion o a momen , I b ough he
pa en s ou o he oom, ook hem o he o ice, and spen
wo hou s alking o hem. O cou se you jus canno
help... bu you’ e alking wi h hem. And hey see in you a
kind o peace o mind, ha you’ e explaining hings, ha
you’ e gi ing hem hope... hen he pa en s wi h whom I
Ca ing o child en wi h b ain umo s in an oncology wa d

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Fio e i • Lau o-G o o • T ingali • Padilla-Muñoz • Papini
did his... hey we e posi i ely imp essed h oughou he
disease. They saw a good pe son, say, who helped hem
in he mos di icul momen ” (nu se 1).
The i s con ac wi h he young pa ien s is
in es ed by a s ong emo ional cha ge whe e
accep ance assumes again a cen al ole. Some
p o essionals p e e o con ac child en wi h a
play ul a i ude, as illus a ed by nu se 5:
“I make jokes... I ask i hey ha e b o he s o
sis e s... One hing ha eally wo ks well is asking
abou hei a ou i e oo ball eam! I s a making jokes
on ha , igh ? Wha I y o do in he i s con ac wi h
he child en is o y o show hem a se ene ace, a
pleasan one, so ha hey know you a e he e ying o
help hem” (nu se 5).
Collabo a ion be ween he p o essionals
The wo ds o he p o essionals show ha he e
a e wo aces in he communica ion o he diagnosis:
on one side, he doc o is always he p o essional
who communica es he diagnosis o he child en and
he amilies. Doc o s and nu ses a i m his p ac ice:
“In he case o b ain umo s, no mally he
neu osu geon o he oncologis communica es
he diagnosis. They a e he ones who s ay he e”
(oncologis 2).
Ano he p o essional ells us:
“The doc o gi es he diagnosis, he e ac ually
he oncologis does i . I belie e ha he g oup o
oncologis s o o doc o s in gene al do i ai ly well.
They pe o m a se ies o es s o ge o he diagnosis
and om he e hey alk wi h he pa en s... Maybe
e en he neu osu geon..., bu a imes i happens ha
he child is in neu osu ge y when a quick su ge y is
planned, so i s hing, hey go in he ope a ing oom
and he pa en s canno eally access he in o ma ion
un il he neu osu geons ope a e on he child. So i can
also happen ha he neu osu geon lea es he ope a ing
oom and says, ‘This child has a umo , called such,
ha is loca ed in his place’ and he gi es he p ognosis.
And in his occasion, he neu osu geons gi e he
news... he bad news. Bu i is always he doc o . The
neu osu geon o he oncologis ” (nu se 8).
Howe e , on he o he side, we can say ha
he e is a sha ed o m o communica ion in ol ing
all he ypes o p o essionals who pa icipa e in
he ca e. F om he wo ds o he p o essionals, i is
clea ha he communica ion o he diagnosis does
no happen in a single session wi h he amily and
he pa ien , bu de elops o e ime h ough a eal
o m o mul idisciplina y collabo a ion among
p o essionals. In ac , he doc o is he one who has
he bu den o b inging he bad news ini ially, bu he
nu ses and he psychologis a e deeply conce ned
wi h he p omo ion o a ai p ocessing o he
ecei ed in o ma ion, as hey p o ide answe s o he
ques ions posed by bo h he amily and he child en
and eassu e hem wi h espec o he he apeu ic
p ocedu es. In his sense, he pa icipa ion o all he
s akeholde s in he communica ion o diagnosis,
al hough a di e en imes and wi h di e en oles,
no only a o s he c ea ion o a ela ionship o us
and an open dialogue be ween amily membe s
and s a , bu also educes he p obabili y ha any
misunde s anding o con usion om he pa ien o
he amily could emain unno iced.
An oncologis commen s on his collabo a ion:
“I is a o m o sha ed communica ion because
e e yone explains some hing o hem. The neu osu geon
explains o hem wha I said be o e, ha he child has a
li le ball in he head. We explain he eamen because
hey unde s and i as such, o example, when you do an
in a eneous eamen you ha e o explain o hem ha
hey mus come o he hospi al, ha you ha e o pu in
a cannula o adminis e he medicine. And o example,
he nu ses gene ally come on he opic o he ope a ing
oom, hey b ing he masks so he child en a e amilia
wi h hese, hey b ing all he ools so he child en can
see ha hose a e he ins umen s” (oncologis 3).
Fo su e, nu ses ha e an impo an ole in he
amily’s p ocessing o he news o he diagnosis.
All nu ses exp ess he awa eness ha hey a e he
p o essionals who welcome he pa en s and hei
doub s and ea s a e he communica ion o he
diagnosis:
“They lea e he o ice s ill blind, hey ha e no
ye in e nalized, maybe hey can’ belie e i , and wi h
all he doub s ha hey hide, hey always come o us
nu ses! Because no mally he doc o is he e in he
mo ning, he gi es hem he news, and when he pa en s
become awa e i is al eady a e noon o nigh . Like I
said be o e, he nu ses a e hose who s ay he closes o
he amily” (nu se 5).
In any case, e en in his sha ed way o
communica ion, each p o essional appea s o
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p o ec he he apeu ic ela ionship buil wi h
he pa ien and amily by his colleagues. When
p o iding cla i ica ion o a colleague’s in o ma ion
o he amily, he co ne s one o he in e en ion is
o sa egua d he p i acy o he exchange ha pa en s
ha e wi h he oncologis . In his way, by e-lea ning
he news di ec ly om he wo ds o he amily, i
is possible o assess he deg ee o unde s anding
ha he amily and he child ha e abou he clinical
si ua ion, and whe e app op ia e, o signal any
p oblem o he colleagues o cla i ica ion:
“When hey see me o he i s ime, hey blow o ,
hey c y... and hey ake i o g an ed ha I know he
diagnosis, bu I ell hem ha he doc o old me ha he e
is a sick child, ha , app oxima ely, I unde s and wha i
is, bu I need ha hey do explain o me wha he doc o
said. I do so because I don’ wan hem s a ing o hink
ha he doc o sp eads a ound pieces o con iden ial
in o ma ion. I p e e ha hey ell me wha hey know,
in o de o unde s and he le el o awa eness ha ha e
abou wha ’s going on. No mally hey a e awa e o he
ac s, as I see hem explaining hem e y well, bu i I see
ha hey say some hing ha I hink is no co ec , o ha
is dissonan wi h wha I know abou his ype o cance ,
hen I ale he doc o , I say ha i is be e i he alks
wi h he amily once mo e” (psychologis 2).
The communica ion o he unde age pa ien
Coming o he issue o he communica ion o he
diagnosis o he unde age pa ien , he in e iewees
ook wo di e en posi ions. In a medical
pe spec i e, he oncologis s ea i m ha he child
should always be in o med abou he diagnosis, in a
way ha is sui able o his le el o comp ehension.
“So... Pedia ics!... He e he e a e child en aged
a ew mon hs, up o 14-15 yea s... hen depending on
he age o he child, we si down wi h him and explain
in his own wo ds wha ’s going on... We simply say:
‘look... you had pain in he head? Well... his head pain
and omi ing you had, his is because we ha e ound
ha you ha e a ball in he head and his ball... we’ll
y o emo e i ... So maybe you will ha e o unde go
su ge y in o de o ake he ball away, and a e we’ll
see i he e will be o he ea men s o be done.’ And
we explain i o him acco ding o he child’s abili y o
unde s and us and acco ding o his age... bu always,
in one o ano he way we ell hem. O cou se, i is
di e en i he’s 16 yea s old o 4, bu e en i he is e y
young we always gi e him a ew hin s o unde s and
why he is in hospi al” (oncologis 1).
Some p o essionals, howe e , unde line how
di icul i migh be o communica e he diagnosis
o a child whose comp ehension abili ies migh be
educed due o neu osu ge y. Once again, he heme
o he physical and neu ological consequences o
he in e en ions is cen al in he collec ed da a. The
s a e o unconsciousness ha some imes ollows
su ge y can limi he possibili y o communica e
di ec ly o he child abou his clinical s a us. In his
ega d, a nu se says:
“Telling he child? The poin is ha no mally he
child en, when hey a i e he e, ha e al eady been
ope a ed on. So... in ac he child en a e in a kind o
coma ose s a e. Maybe be o e diagnosis child en eel
symp oms... maybe because hei head hu s hen hey
know some hing... bu I do no hink ha he child en
a e gi en a lo o in o ma ion” (nu se 5).
The p o essional’s eelings: heal hy posi i e coping
When he pa en s a e in a s a e o shock, hey
equi e he oppo uni y o exp ess hei eelings in
on o he s a membe s ha a e he e o suppo
hem. On his opic, an oncologis old us:
“Logically i is a piece o news ha ... is like an
emo ional bomb o hem. He e in his o ice many
pa en ha e c ied... and ha ’s i . I le hem c y and a e
ha I always y o gi e hem hope ha we can help
hem” (oncologis 1).
Ne e heless, p o essionals ha e o ake ca e o
he amilies and he pa ien s, bu hey also ha e o
manage a se e e emo ional shock o hemsel es:
“Then a imes you a e he e in he oom and he
doc o comes in wi h he M.R.I. scans and says: ‘This
he e is a umo ...’ and maybe i is a umo as big as an
o ange in he cen e o he child’s head... And i canno
be emo ed! I seems impossible” (nu se 4).
The e a e a lo o di e en eelings which he
p o essionals ha e abou he i s mee ing wi h
child en a ec ed by b ain cance and hei amilies:
hope, compassion, senses o s uggle and ebellion,
among o he s. A nu se old us ha he i s eeling
in he expe ience is he oughes , as i is he one
ha eminds he ha he e is “s ill ano he child, one
mo e su e ing” (nu se 3).
“My eelings? “S ill ano he !” S ill ano he ... yes...
because, well, he e is no di e ence i he is young o no ,
Ca ing o child en wi h b ain umo s in an oncology wa d
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Fio e i • Lau o-G o o • T ingali • Padilla-Muñoz • Papini
bu hey all a e child en, so I hink: “So young... and
al eady he s a s ha ing all his.” Because he comes he e
and emains o one yea a he minimum. So young and
al eady in his ou ine? All ha he will ha e o su e , all
ha will happen o him...” (nu se 3).
Faced wi h his complexi y o mixed emo ions,
some p o essionals epo ed an a emp o c ea e
a de ensi e ba ie in o de o a oid becoming
oo in ol ed by wo k expe ience. This o m o
p o ec ion, as e ec i ely explained in he wo ds
oncologis 3, does no always seem o wo k,
bu ins ead clashes wi h he need o es ablish a
he apeu ic p ac ice on he ela ionship wi h he
pa ien , e en i his means becoming mo e in ol ed
wi h him:
“I eally li e i in such a way ha ... I y no o be so
in ol ed as no o be able o p o ide any help... bu he
u h is ha a e , I become ond o each pa ien ! Each
bi o news... e e y ime he e is a new child... I do no
know how o explain i ... hey ell me ‘Come, you who
a e mo e used o i .’ Well, I’m used o he wo k, no o
he su e ing... Is i ha bad?... You li e wi h each o
hem (...) We need o s a om sc a ch o help hem...
and become a ached” (oncologis 3).
Anyway, i is e y di icul o he p o essionals
o manage emo ions and o disconnec wi h he wo k
expe ience when hey li e hei p i a e li e. Some
nu ses and oncologis s epo ha hey always hink
abou job when hey a e a home:
“… A you home you c y. You s a c ying. I
is always he same. Ei he om a song ha hey a e
playing on he adio o o wha e e o he eason. A
my child en’s school pa y o Ch is mas, I saw all
hese child en singing, so heal hy, so happy, all so
igh , and I s a ed c ying and I was no able o s op.
They we e all looking a me and saying: “Bu wha is
she doing, ha one, is she c azy?” All he wo ld happy
and I was c ying! And i ’s jus like ha , I s a c ying,
and i happens ha way. I was he e c ying o wo
hou s and a e ha i wen o ” (nu se 4).
Discussion
The impo ance o including he pe spec i e
o he child su e ing om cance o imp o e he
quali y o hei ca e is a opic conside ed by di e en
s udies, and is designed by a quali a i e me hodology
[5-7, 24, 26]. Howe e , conside ing he iangle
comp ising child, amily and p o essional s a
ha p o ides ca e in he ield o pedia ic psycho-
oncology, pe haps his la e g oup has ecei ed less
a en ion om he phenomenological-he meneu ic
me hod. As we w o e in he in oduc ion o his
a icle, ou wo king g oup has ied o deepen he
poin o iew o heal h ca e p o essionals in ol ed
in he ea men p ocess o child en wi h b ain
cance (speci ically, oncologis s, su geons, nu ses,
e c.) [14, 25, 33], in pa icula hei pe cep ions
abou he pa ien s and hei amilies in he e y
c i ical phase o he ini ial con ac wi h he s a and
along he diagnos ic p ocess.
The he apeu ic app oach o b ain cance is
among he mo e complex p o ocols in oncology
as many specialis s coming om di e en
disciplines a e in ol ed in he he apy om he
e y beginning. A child wi h b ain umo he e o e
migh be add essed o he Oncology Wa d o o he
Neu osu ge y Uni i s , acco ding o his clinical
condi ions and o he u gency o plan neu osu ge y.
This is no usually he case o pa ien s p esen ing
wi h o he oncological pa hologies. Mos o he
membe s o he Oncology Wa d s a signaled ha
a supplemen a y sou ce o di icul ies a ises wi h
hese pa ien s when i is no possible o hem o
mee he pa ien be o e he unde goes neu osu ge y.
Many heal h ca e p o ide s a i med ha i is no a
easy o ge in ouch wi h a child who is in a s a e o
p o ound emo ional dis ess and su e s om se e e
cogni i e limi a ions due o he d awbacks o he
in e en ion.
Acco ding o he in e iews, he p oblem canno
be limi ed o he issue o es ablishing he he apeu ic
ela ionship as he ac o no knowing he pa ien in
his s anda d way o unc ioning and beha ing can be
a ele an limi a ion e en when de ining he speci ic
goals o he he apeu ic plan, especially hose ela ed
o quali y o li e issues. In a conc e e plan, hese
kinds o p oblems enligh en he complexi y implied
by he in insic mul idisciplina y cha ac e iza ion o
he p ocess o ca ing o a child wi h b ain umo s,
one ha is o en se in place unde he absolu e
u ge o a li esa ing in e en ion. I we conside
he pa icipan s’ wo ds om a psychodynamic
pe spec i e, he oppo uni y o ge in con ac wi h
he child be o e su ge y, when he is s ill looking
like a heal hy child, sugges s he need o emain
in con ac wi h a kind o an image o a “good and
whole objec ”. Reco e y is o en seen as a kind o
es i u io ad in eg um, and he possibili y o keep in
mind a conc e e image o his in eg um ( he child as
an in ac , unb oken objec ) could p o ide suppo o
he healing acul ies o he s a membe s in a deep
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psychological sense. Acco ding o a psychodynamic
poin o iew we would say ha when he child ge s
wo se and his physical condi ions de e io a es, an
inne image o he child emains, who says: “Well!
I’m well!,” as nu se 7 epo ed, as a good and li ely
objec ha p ese es and p o ec s he he apeu ic
bond [34]. F om a di e en heo e ical and
me hodological pe spec i e, he s udy Jackson and
colleagues [35] conduc ed in a pedia ic hospi al in
Melbou ne also discusses he eelings o pa en s
in he ea ly days a e diagnosis, hus, he need o
es ablish e ec i e communica ion be ween s a
membe s and pa en s o p o ide he bes possible
ca e o child en diagnosed wi h b ain umo .
Nu ses exp ess hei discom o in acing
amilies jus a e he communica ion o diagnosis,
when hey can eel how shocked hey a e and ha
is no possible o do any hing o hem, “because in
ha momen he wo ld e ol es a ound hem” (nu se
2). Tes imonies show ha is impo an o c ea e a
g adual ela ionship, based on he pa en s’ needs,
allowing hem o diges he di icul in o ma ion
o e ime and o expe ience a complex ange o
emo ional s a es: ange , ebellion, despai , bu also,
in he end, con idence in he p o essionals.
Al hough heal h ca e p o ide s epo a ce ain
deg ee o pe sonal and p o essional sa is ac ion
wi h espec o he ela ionship wi h pa ien s and
hei amilies, hey appea o be awa e ha he
cons uc ion o a posi i e he apeu ic alliance is
he esul o an ex ended p ocess ha o en begins
wi h he ebellion o he amilies agains accep ing
o hei p esen si ua ion. This di icul y in he
i s con ac hinde s he possibili y o de eloping
a amily-cen e ed ca e, which is a highly ele an
app oach in pedia ic oncology, chie ly o nu ses.
Thus, MacKay and G ego y [36], u ilizing pe son-
cen e ed in e iews o collec da a, in e iewed
20 nu ses o he Oncology Wa d o a pedia ic
hospi al in Wes Canada. The pu pose o his
s udy was o iden i y how pedia ic oncology
nu ses implemen ed amily-cen e ed ca e (FCC)
in o hei p ac ice, wha acili a ed and enabled
pedia ic oncology nu ses o implemen FCC, and
which ba ie s and challenges we e p esen in hei
se ings when implemen ing FCC.
Hill and colleagues [37] also de eloped a
quali a i e me hodology ha ocuses on how a he s
iew and unde s and hei oles in amilies wi h a
child wi h acu e lymphoblas ic leukemia: speci ic
aining o p o essionals, no only o nu ses, in
implemen ing FCC, could alle ia e some o he
di icul ies highligh ed in he in e iews.
In o de o cope wi h he expe ience o hese
amilies, he heal hca e s a has de eloped a way
o communica ing ha is sha ed by all p o essionals
wi h he in en o mee he ea s and doub s ha a ise
in pa en s and child en h ough ull a ailabili y o
answe ques ions and e iew he in o ma ion as i is
unde s ood by he pa en s abou he diagnosis o e
ime in di e en occasions. By engaging in hese
p ac ices, pa en s a e suppo ed in hei ewo king
h ough in o ma ion p o ided by he doc o and
o he heal h ca e p o ide s.
In his way, all p o essionals will demons a e
hei a ailabili y o be seen as a cons an p esence ha
can be suppo i e and us wo hy in he ha d imes
ha ollow he diagnosis. In he s udy by Cla ke and
Fle che [12], he main p oblems o communica ion
be ween p o essionals and pa en s we e analyzed,
especially in he ea ly days abou diagnosis . Pa en s
usually began hei na a i es o he de ining momen s
in he mon hs, weeks, o days p io o he diagnosis.
The au ho s epo ed on pa en s’ iews abou one o
he de ining momen s in he s o ies.
Communica ion wi h he pa en s
This le el, called by us “communica ion
issues,” includes he pa en s’ issues wi h how
he communica ion was made a diagnosis,
con adic ions and con usion, eeling whe he hey
a e ge ing he “ igh ” amoun o in o ma ion, i
hey ecei ed good o poo communica ion, i hey
eel lis ened o, and e o s in medical in o ma ion.
Wi h espec o he heme o he communica ion
o diagnosis, s a membe s exp essed disco dan
opinions o Cla ke and Fle che [12] abou who
communica es he diagnosis and abou which
wo aspec s o he communica ions eme ged. All
p o essionals ag ee ha i is always a doc o who
in o ms he child en and he pa en s abou he
clinical si ua ion. In some espec s, in he iew
o almos all he membe s o he s a o ca e, he
physician ecei es he amily in his o ice and
explains o hem he p oblem ha has eme ged by
explaining he na u e o he illness and he ype o
he ea men s equi ed. Howe e , some heal h ca e
p o ide s belie e ha , in p ac ice, he e is a sha ed
o m o communica ion be ween di e en ype o
p o essionals (oncologis s, neu osu geons, nu ses,
o psychologis s) who con ibu e o explaining
he diagnosis o he child and pa en s, hus as ly
en iching he communica ion [38].
Nu ses ecognize hei ole as impo an in
his phase o he disease. Being he p o essionals
Ca ing o child en wi h b ain umo s in an oncology wa d