Caring for children with brain tumors in an oncology ward: a phenomenologic-hermeneutic study

1/12 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 2/12 Jou nal o Pedia ic and Neona al Indi idualized Medicine • ol. 3 • n. 1 • 2014www.jpnim.com Open Access 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 3/12 Jou nal o Pedia ic and Neona al Indi idualized Medicine • ol. 3 • n. 1 • 2014 www.jpnim.com Open Access 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 4/12 Jou nal o Pedia ic and Neona al Indi idualized Medicine • ol. 3 • n. 1 • 2014www.jpnim.com Open Access 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). 5/12 Jou nal o Pedia ic and Neona al Indi idualized Medicine • ol. 3 • n. 1 • 2014 www.jpnim.com Open Access 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 6/12 Jou nal o Pedia ic and Neona al Indi idualized Medicine • ol. 3 • n. 1 • 2014www.jpnim.com Open Access 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 7/12 Jou nal o Pedia ic and Neona al Indi idualized Medicine • ol. 3 • n. 1 • 2014 www.jpnim.com Open Access 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 8/12 Jou nal o Pedia ic and Neona al Indi idualized Medicine • ol. 3 • n. 1 • 2014www.jpnim.com Open Access 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 9/12 Jou nal o Pedia ic and Neona al Indi idualized Medicine • ol. 3 • n. 1 • 2014 www.jpnim.com Open Access 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