PURPOSE: (1) Investigate supportive care needs and preferences of parents of children with cancer (2) Assess the feasibility and preliminary outcomes of a Parent Support Group Intervention (PSGI). METHODS: One-hundred and eight parents completed the Parent Support Survey (PSS). Data were utilized in the creation of a PSGI. The PSGI consisted of eight 1.5-hour sessions encompassing guided group discussion. As part of feasibility, acceptability, recruitment/retention and preliminary outcomes were assessed. Parents completed outcome measures assessing knowledge of disease/treatment management, community/hospital/family resources, perception of social support and feelings of distress/anxiety. RESULTS: From the PSS, 86/108 (80%) of parents expressed interest in a PSGI. Fourteen parents attended the PSGI only once and 14 parents attended the PSGI more than once. Outcome measure results depict favourable changes after group attendance. Recruitment and retention data highlight challenges. CONCLUSIONS: Information gained from this study will be used to improve planning and delievery of future PSGI’s.

Submitted by Noeme Timbo (noeme.timbo@metodista.br) on 2017-04-24T18:37:50Z No. of bitstreams: 1 ANA LUIZA DIAS.pdf: 998026 bytes, checksum: 04c1ef7903cb5ba7c64bf646198de914 (MD5) / Made available in DSpace on 2017-04-24T18:37:50Z (GMT). No. of bitstreams: 1 ANA LUIZA DIAS.pdf: 998026 bytes, checksum: 04c1ef7903cb5ba7c64bf646198de914 (MD5) Previous issue date: 2016-03-18 / Cancer is the main pathology responsible for deaths among children and adolescents in Brazil and the estimate shows that there is a growing incidence of new cases year after year. The treatment for this chronic disease is long, painful and distressing and the possibility of death follows the patient and family all the time in this process. Besides, the health care network in many regions of our country is not prepared to provide the necessary services for this population, therefore, children and caregivers are transferred to cancer centers of reference which are often indeed far from their homes. Therefore, the objectives of this study are aimed at the description of the health beliefs of caregivers of children with cancer welcomed by support houses of São Paulo and to understand the influence that this health beliefs have on the role of caregiver. 10 women were interviewed, mostly mothers of infants aged from 04 to 13 years who were under treatment for cancer or in remission and control period. The collected data were analyzed according to the research model in "health beliefs" which assesses the impact of the diagnosis, susceptibility, severity, benefits, barriers, self-efficacy and expectations for the future according to the perception of each caregiver. The results show that from diagnosis until the last visit of the control period anguish, anxiety, insecurity and fear are present in the routine of these women and the distance of their homes, the extended family and their everyday activities is a factor that significantly aggravates the intense suffering that this experience cause. From these results it is recommended that more psychosocial care from multidisciplinary teams of support houses and health care network in order to lessen the emotional burden and reduce the psychological damage caused by cancer and their processing. It is expected that changes in this area allow families a better living with the disease and the inevitable transfer to oncology centers, as well as re-establish basic aspects of quality of life of children cancer patients caregivers. / O câncer é a principal patologia responsável por óbitos entre crianças e adolescentes do Brasil e a estimativa mostra que haverá uma crescente incidência de novos casos ano após ano. O tratamento para esta doença crônica é longo, doloroso e angustiante e a possibilidade de morte segue o paciente e a família o tempo todo neste processo. Além disso, a rede de assistência à saúde de muitas regiões do nosso país não está preparada para prestar os serviços necessários para esta população, sendo assim, crianças e acompanhantes são transferidos para centros oncológicos de referência que muitas vezes ficam deveras distantes de seus lares. Portanto, os objetivos deste estudo visam à descrição das convicções de saúde das cuidadoras de crianças com câncer acolhidas por casas de apoio da cidade de São Paulo, bem como à compreensão da influência que estas convicções de saúde exercem no papel de cuidador. Foram entrevistadas 10 mulheres, em sua grande maioria mães, de infantes com idade entre 04 e 13 anos que estavam sob o tratamento contra o câncer ou em período de remissão e controle. Os dados levantados foram analisados de acordo com o modelo de pesquisa em “convicções de saúde” que avalia o impacto do diagnóstico, a suscetibilidade, a severidade, os benefícios, as barreiras, a eficácia própria e as expectativas para futuro segundo a percepção de cada cuidador. Os resultados apontam que desde o diagnóstico até a última consulta do período de controle a angústia, a ansiedade, a insegurança e o medo estão presentes na rotina destas mulheres. Também, o distanciamento de seus lares, dos familiares e de suas atividades corriqueiras é um fator que agrava significantemente o sofrimento intenso que esta experiência causa. Diante destes resultados recomenda-se mais atenção psicossocial das equipes multidisciplinares das casas de apoio e da rede de assistência à saúde com o propósito de diminuir a carga emocional e reduzir os danos psíquicos causados pelo câncer e seu respectivo tratamento. Espera-se que mudanças neste âmbito possibilitem às famílias um melhor convívio com a doença e a inevitável transferência para outros centros de atendimento, bem como restabeleça aspectos fundamentais da qualidade de vida de cuidadores de pacientes oncológicos infantis.

As primeiras publicações sobre o paciente pediátrico com câncer na UTI datam do final da década de 1980, e a função da UTIP (Unidade de Terapia Intensiva Pediátrica) está bem estabelecida como medida de suporte nas fases da doença de maior gravidade clínica, tanto no diagnóstico inicial como durante o tratamento e suas complicações. Em virtude das peculiaridades do paciente oncológico, que reforçam a importância de verificarmos a probabilidade de óbito, foi introduzida a utilização de escores prognósticos como ferramenta de controle da qualidade assistencial e para cálculo de risco de mortalidade. Objetivo: Avaliar o desempenho (discriminação e calibração) do escore PIM2 nos pacientes com câncer na UTI Pediátrica. Determinar os fatores associados a uma chance maior de óbito. Métodos: Estudo retrospectivo, de base histórica das admissões de crianças e adolescentes com câncer na UTIP do HCPA no período de janeiro 2002 a dezembro de 2005. Resultados e conclusões: Foram estudadas 201 admissões de pacientes, com uma taxa de mortalidade geral de 19%. A discriminação do escore PIM2 (auc-ROC = 0,88; IC 0,82- 0,94; p < 0,0001), foi considerada adequada. O valor do ponto de corte para o escore PIM 2 na curva auc-ROC foi de 6,3%. Não houve uma boa calibração para os intervalos de risco do PIM2 (X²= 22,8, gl = 4, p < 0,001). As variáveis relacionadas com pior prognóstico foram: choque (Odds- Ratio, OR=6,79; IC= 2,81- 21,2), FMO (OR=4,94; IC= 1,33-18,34), leucopenia (OR= 4,65; IC= 1,58-13,6) e terapêutica com ventilação mecânica (OR= 4,1; IC = 1,11-15,04). / Introduction: The first studies on pediatric cancer patients treated in intensive care unit were published in late eighties. After that the role of pediatric intensive care unit became well established and the prognostic scores for oncologic patient were more broadly used. quality control of assistance and prognostication. Objective: Assess the performance (discrimination and calibration) in cancer patients in a tertiary Paediatric Intensive Care Unit. Describe the associated factors with the risk of mortality in these patients. Methods: Retrospective analysis of 201 admissions in Hospital Clínicas Porto Alegre Pediatric Intensive Care Unit from January, 2002, to December, 2005. Results and conclusions: 201 admissions of patients with a mortality rate of 19%. The discrimination of PIM2 score (auc-ROC = 0,88; IC 0,82- 0,94; p < 0,0001) was considered good or adequated. The threshold value (cut off point) for the PIM2 score was 6,3%, The chi- square test has no good calibration. (X²= 22,8, p < 0,001, dof = 4). The variables more related to bad outcome were: shock (OR= Odds- Ratio, OR= 6,79, CI= 2,81- 21,2)., DMO (OR= 4,94, IC= 1,33- 18,34), leucopenia (OR= 4,65, CI= 1,58-13,6) and therapeutic support with mechanical ventilation (OR= 4,1, CI= 1,11- 15,04).

As primeiras publicações sobre o paciente pediátrico com câncer na UTI datam do final da década de 1980, e a função da UTIP (Unidade de Terapia Intensiva Pediátrica) está bem estabelecida como medida de suporte nas fases da doença de maior gravidade clínica, tanto no diagnóstico inicial como durante o tratamento e suas complicações. Em virtude das peculiaridades do paciente oncológico, que reforçam a importância de verificarmos a probabilidade de óbito, foi introduzida a utilização de escores prognósticos como ferramenta de controle da qualidade assistencial e para cálculo de risco de mortalidade. Objetivo: Avaliar o desempenho (discriminação e calibração) do escore PIM2 nos pacientes com câncer na UTI Pediátrica. Determinar os fatores associados a uma chance maior de óbito. Métodos: Estudo retrospectivo, de base histórica das admissões de crianças e adolescentes com câncer na UTIP do HCPA no período de janeiro 2002 a dezembro de 2005. Resultados e conclusões: Foram estudadas 201 admissões de pacientes, com uma taxa de mortalidade geral de 19%. A discriminação do escore PIM2 (auc-ROC = 0,88; IC 0,82- 0,94; p < 0,0001), foi considerada adequada. O valor do ponto de corte para o escore PIM 2 na curva auc-ROC foi de 6,3%. Não houve uma boa calibração para os intervalos de risco do PIM2 (X²= 22,8, gl = 4, p < 0,001). As variáveis relacionadas com pior prognóstico foram: choque (Odds- Ratio, OR=6,79; IC= 2,81- 21,2), FMO (OR=4,94; IC= 1,33-18,34), leucopenia (OR= 4,65; IC= 1,58-13,6) e terapêutica com ventilação mecânica (OR= 4,1; IC = 1,11-15,04). / Introduction: The first studies on pediatric cancer patients treated in intensive care unit were published in late eighties. After that the role of pediatric intensive care unit became well established and the prognostic scores for oncologic patient were more broadly used. quality control of assistance and prognostication. Objective: Assess the performance (discrimination and calibration) in cancer patients in a tertiary Paediatric Intensive Care Unit. Describe the associated factors with the risk of mortality in these patients. Methods: Retrospective analysis of 201 admissions in Hospital Clínicas Porto Alegre Pediatric Intensive Care Unit from January, 2002, to December, 2005. Results and conclusions: 201 admissions of patients with a mortality rate of 19%. The discrimination of PIM2 score (auc-ROC = 0,88; IC 0,82- 0,94; p < 0,0001) was considered good or adequated. The threshold value (cut off point) for the PIM2 score was 6,3%, The chi- square test has no good calibration. (X²= 22,8, p < 0,001, dof = 4). The variables more related to bad outcome were: shock (OR= Odds- Ratio, OR= 6,79, CI= 2,81- 21,2)., DMO (OR= 4,94, IC= 1,33- 18,34), leucopenia (OR= 4,65, CI= 1,58-13,6) and therapeutic support with mechanical ventilation (OR= 4,1, CI= 1,11- 15,04).

Bakgrund: Vårdnadshavare till barn med cancer står inför stora påfrestningar och förmågan att hantera dessa är till stor del beroende av vårdpersonalens arbets- och förhållningssätt. Familjecentrerad omvårdnad är ett tillvägagångssätt där både patienten och familjen står i centrum. Syfte: Att undersöka upplevelser av familjecentrerad vård hos föräldrar till barn med cancer och dess påverkan på livskvalitet. Metod: Litteraturstudie med genomgång av vetenskapliga originalartiklar som berörde ämnet och kunde bidra till att svara på syftet med studien. Artiklarna analyserades med en manifest innehållsanalys. Resultat: Resultatet kunde delas in i fem kategorier; belastning på vårdnadshavare, kontrollbehov, hoppfullhet, relation med vårdpersonal och indirekt påverkan. Familjecentrerad vård kan minska belastningen på vårdnadshavare vilket i sin tur har en positiv inverkan på livskvalitet. Belastningen på vårdnadshavaren var i sin tur relaterat till vårdnadshavarens självförtroende/självuppfattning, kunskap/bemästring, och optimism. Vårdnadshavare uttryckte många gånger behov som kunde associeras till grunderna i familjecentrerad omvårdnad. Slutsats: Familjecentrerad vård har en inverkan på vårdnadshavares fysiska och psykiska välmående. Livskvalitet är indirekt relaterat till familjecentrerad vård genom belastning på vårdnadshavare. Det är viktigt att vårdpersonal individanpassar den familjecentrerade vården efter varje persons behov och mottaglighet för information. / Background: Parents of children with cancer are facing stresses, and the ability to handle these depends to a great extent on the health care professionals work and approach. Family-centered care is an approach where both the patient and the family are in the center. Aim: To investigate experiences of family-centered care and the influence on life quality among parents of children with cancer. Method: A literature study with a review of scientific original articles within the area which could contribute to answer the aim of the study. The articles were analyzed with manifest content analysis. Results: The analysis resulted in five categories; caregiving burden, checking needs, hopefulness, relationship with health care professionals and indirectly impact. Family-centered care relieved parents of caregiving burden, which had a positive influence on life quality. Caregiving burden was connected to the parents’ self-perception, mastering and optimism. Parents often expressed needs, which correlated to the core concept of family-centered care. Conclusion: Family-centered care has a great impact on parents’ physical and psychological well-being. Quality of life can indirectly be linked to family-centered care through caregiving burden. It’s important for health professionals to individualize the care according to each person’s need and receptivity.

Este trabalho aborda a problemática do câncer infantil sob a perspectiva do professor de ensino fundamental que experiencia o adoecimento de um de seus alunos. O câncer infantil não é mais considerado uma doença fatal, a cura é uma possibilidade bem frequente e a ênfase, atualmente, tem se voltado sobretudo para a qualidade de vida dos sobreviventes do tratamento. A escola ocupa um lugar privilegiado, na medida em que é determinante para a aprendizagem mas, principalmente, para a manutenção dos laços sociais da criança. A despeito do que recomendam as sociedades de Oncologia Pediátrica, a criança com câncer continua a ser afastada da escola no período do tratamento e o professor é apontado na literatura especializada como um dos principais agentes da reinserção escolar dessas crianças O modelo de investigação utilizado é o da pesquisa em psicanálise e o trabalho está dividido em três momentos: revisão bibliográfica sobre o tema, fundamentação teórica e a pesquisa de campo através de entrevistas. A condução das entrevistas e a análise dos resultados foram orientadas pela psicanálise através do referencial teórico de Freud e de Lacan. Foram entrevistados sete professores da rede pública e particular de ensino de escolas da grande São Paulo. O conceito de imaginário trazido por Lacan nos permitiu investigar tanto o impacto que pode produzir no professor o anúncio de adoecimento de um de seus alunos, como o efeito que pode produzir na criança o modo como o professor é afetado. Para contribuir com um espaço de reflexão, discutimos a perspectiva inclusiva de educação como um instrumento auxiliar na reinserção da criança, entendendo que a escola constitui, desde a época moderna, um dos pilares da infância / This thesis addresses the issue of childhood cancer as perceived by the elementary school teacher who discovers and experiences the progression of the disease in one of his students. Childhood cancer is not considered a fatal disease any longer and a cure is now a more frequent outcome. Thus, the emphasis nowadays has turned towards improving the quality of life post-treatment. In this context, the school is in a privileged position, as it is not only determinant to the childs learning process, but also to the maintenance of a network of social interactions and skills. Irrespective of the recommendations of pediatric oncology organizations, the child patient with cancer is often kept away from school during treatment. According to the specialized literature in this topic, the teacher is one of the main agents responsible for the reinsertion of the child back to school. The investigatory model used here is based on psychoanalysis research. The work is divided in three parts: a literature review on the topic, the establishment of a theoretical foundation and field work conducted through interviews. The interview procedure and the analysis of the results were performed according to established practices in psychoanalysis and guided through the theory of Freud and Lacan. Eight teachers from the Great São Paulo public and private school systems were interviewed. The concept of the imaginary, introduced by Lacan, has allowed us to investigate both the outcome on the teacher upon receiving news of his pupils illness as well as the effect that his reactions have on the child himself. To contribute with a reflection, we further discuss the perspective of an inclusive education as an auxiliary tool in the reinsertion process, understanding that the school constitutes, since the beginning of modern times, one of the pillars of childhood

Bakgrund: När ett barn blir sjukt i obotlig cancersjukdom tar föräldrarna på sig en vårdarroll. De har rätt till information för att kunna ta beslut och ges möjlighet till att vara delaktiga i barnets vård. Syfte: Att belysa föräldrars erfarenheter av sitt barns sista tid i obotlig cancersjukdom. Metod: En narrativ metod med kvalitativ ansats användes för att analysera fyra självbiografier. Resultat: Analysen resulterade i två huvudteman: Att vara förälder till ett barn med obotlig cancer och När livet ändrar inriktning. Resultatet visar att livsvärlden förändras och att föräldrarna utöver föräldrarollen, får en vårdarroll. Diskussion: Föräldrar i sin vårdarroll är i behov av information för att kunna ta beslut som rör barnets vård. Föräldrarna drabbas av lidande under barnets sjukdom, vilket gör att de också kan vara i behov av omvårdnad. Sjuksköterskan har en central roll i vårdandet när det kommer till information och behandlingar, men behöver också kunna stödja familjen och vägleda föräldrarna mot insikten att barnet kommer dö av sin sjukdom. Konklusion: Sjuksköterskan behöver arbeta efter ett familjecentrerat förhållningssätt då föräldrarna behöver stöd för att uppfylla sin vårdarroll. Sjuksköterskan behöver god kompetens inom palliativ vård och vara insatt i barnets vård för att kunna utföra en god omvårdnad. / Background: When a child gets sick in incurable cancer, parents become caregivers. They have the right to get information to make decisions and participate in their child’s care. Aim: To describe parents’ experience of their child’s last time in incurable cancer. Method: A narrative method with a qualitative approach was used to analyze four biographies. Results: The analysis resulted in two main themes: Being a parent to a child with incurable cancer and When life changes direction. The result shows that the lifeworld changed and the parenting role was combined with a caregiving role. Discussion: Parents in their caregiving role is in need of information to make decisions related to the child’s care. Parents are affected by suffering during the child’s disease, which means that they may also be in need of care. The nurse has a central role in the care when it comes to information and treatments, but they also need to support the family and guide the parents towards the knowledge that the child is going to die of their disease. Conclusion: The nurse needs to work with a family-centered approach because the parents needs support to fulfill the caregiving role. The nurse also need to have good knowledge about palliative care and be inserted in the child’s care to give good care.

Bakgrund: Över 400 000 barn insjuknar i cancer varje år globalt. Cancerdiagnosen samt behandlingen drabbar hela familjen och föräldrarna genomgår därmed en stor kris. Beroende på hur individen i sig kan hantera situationen och känna en känsla av sammanhang, kommer de uppleva och agera olika. Tidigare forskning nämner att sjuksköterskan kan uppleva familjecentrerad omvårdnad komplicerad att utföra på grund av föräldrarnas reaktioner, attityder samt beteenden. Vidare påpekar litteratur att föräldrarna ofta upplever mer ångest än patienten själv. Oavsett om detta anses svårt har sjuksköterskan en skyldighet att arbeta i partnerskap med patienten och dess närstående. Syfte: Syftet var att beskriva upplevelser hos föräldrar till barn som behandlas för cancer.  Metod: En litteraturstudie med en deskriptiv design genomfördes och baserades på tio kvalitativa originalartiklar som inhämtades från databaserna CINAHL och PubMed. De tio artiklarna som inkluderades har uppnått hög kvalitet efter kvalitetsgranskning. Resultat: Föräldrarnas upplevelser visade sig skilja mycket mellan varandra. Fyra copingstrategier identifierades. Föräldrarna beskrev även emotionella upplevelser i form av oro och skuld. Vidare beskrev vårdnadshavarna olika upplevelser av vårdpersonalen och att en god relation var en viktig faktor för en tillfredsställd vårdtid. Slutsats: Resultatet visade på att ett ökat samarbete mellan sjuksköterska och föräldrar kan förbättra hela vårdupplevelsen. En ökad förståelse om föräldrarnas upplevelser kan underlätta för sjuksköterskan att möta deras behov i krissituationer. Sjuksköterskan får då större möjlighet till att kunna möta deras behov under vårdtiden, det vill säga genom personcentrerad och familjecentrerad vård. / Background: More than 400,000 children survive from cancer each year. The cancer diagnosis and treatment affects the whole family and the parents are thus undergoing a major crisis. Depending on how the individual can handle the situation and feel a sense of coherence, they will experience and act differently. Previous research mentions that the nurse may experience family-centered care complicated to perform due to the parents' reactions, attitudes and behaviors. Furthermore, literature points out that parents often experience more anxiety than the patient itself. Regardless of whether this is considered difficult, the nurse has an obligation to work in partnership with the patient and their relatives. Aim: The aim of this study was to describe the experience of parents who have children being treated for cancer.Method: A literature study with a descriptive design was conducted and based on ten qualitative original articles from the databases CINAHL and PubMed. The ten articles achieved high quality after quality review.  Result: Parents' experiences turned out to be very different from each other. Four coping strategies were identified. The parents also described emotional experiences in the form of worry and guilt. Furthermore, the guardians described different experiences of caregivers and that a good relationship between them was an important issue for a satisfied hospital stay.  Conclusion: The results showed that increased collaboration between the nurse and parents can improve the entire care experience in general. An increased understanding of the nurse regarding the parents' experiences provides insight into how the parents can act in a crisis. The nurse has then a greater opportunity to be able to meet their needs during the hospital stay, and therefore perform person-centered and family-centered care.

Background: Children who suffer from cancer do not only suffer from a physical illness, they are also affected on a psychological level. There is a great lack of knowledge about how healthcare workers can promote mental health during and after cancer treatment. Studies show that most childhood cancer survivors suffer from extreme fatigue, poorer quality of life, emotional problems such as anxiety and depression but also post-traumatic stress disorder (PTSD). Aim: The aim of this literature study was to investigate how mental health can be promoted during and after cancer treatment. Method: A general literature study with 16 quantitative articles. Results: Promoting mental health can be done in several ways: with physical activity, early detection of emotional symptoms and through alternative treatments. A number of health interventions can also be helpful such as psychological support and hospital clowns but mostly physical activity. Conclusion: There is a lot of health interventions that can promote mental health. Physical activity is the most researched subject that has been shown to have a strong connection to mental health. However, more research is needed on alternative treatments, as they have shown to have a positive effect on mental health.

Sammanfattning/Abstract Brundin Larsson, Sara (2022). Hjärntrötthet- ”Det är detta att det är osynligt”. Specialpedagogprogrammet, Institutionen för skolutveckling och ledarskap, Lärande och samhälle, Malmö universitet, 90 hp. Förväntat kunskapsbidrag Min önskan är att uppmärksamma hjärntrötthet hos barn och unga och vilka konsekvenser en sådan trötthet kan innebära för en skolelev. Hur resonerar elever och deras vårdnadshavare om skolans bemötande och vad har mötet betytt för barnet eller den unge i deras skolarbete. Studien vill därmed ge ett bidrag till vad skolpersonal, men i synnerhet specialpedagoger, bör känna till om hjärntrötthet och vilka anpassningar drabbade kan vara hjälpta av under kortare eller längre tid. Syfte och frågeställningar Syftet med studien är att, genom livsvärldsberättelser, öka kunskapen om vilka behov elever med hjärntrötthet kan ha och hur det kan påverka deras vardag i skolan, utifrån ett elev- och vårdnadshavarperspektiv. Ytterligare ett syfte är att beskriva informanternas upplevelser av samarbetet med skolan och de anpassningar som gjorts där. Vilka svårigheter och behov upplever hjärntrötta elever, och deras vårdnadshavare, att de har? Hur har elever och vårdnadshavare upplevt mötet med skolan och de anpassningar man gjort för att möta deras behov? Vad anser informanterna att pedagoger särskilt bör tänka på när de möter elever med hjärntrötthet? Teori I denna studie används livsvärldsfenomenologin som teoretiskt ramverk (Bengtsson &amp; Berndtsson, 2015).  Anledningen till valet av ett livsvärldsfenomenologiskt perspektiv på denna studie är att genom intervjuer kunna få ta del av elevers och deras vårdnadshavares upplevelser av hur det är att leva med hjärntrötthet som ung elev, samt hur informanterna upplevt samarbetet med skolan. Ansatsen möjliggör att få ta del av deras livsvärld kring hjärntrötthet. De olika teoretiska begreppen; subjekt, sammanflätningar, regional värld, levd kropp och instrument används som en grund och ram för att förstå och tolka informanternas livsberättelser. Metod Detta är en kvalitativ studie där tre elever och deras vårdnadshavare intervjuats om sina upplevelser av mötet med skolan som hjärntrött elev. Eftersom en önskan fanns om ett öppet samtal, med mina forskningsfrågor som utgångspunkt, valdes semistrukturerade intervjuer. Resultat Genom informanternas livsberättelser framkommer att det är krävande att befinna sig i miljöer med mycket ljud. Efter en tids exponering för mycket ljud får de ont i huvudet och dagar som är extra utmanande kan innebära att de måste ligga och vila resten av dagen hemma, eller flera dagar för att återfå energi. De har alla behov av att ibland kunna komma ifrån klassrummet, speciellt då det är pratigt, för att få sitta i en lugn miljö.        Avgränsning av arbetsuppgifter finns också ett stort behov av. Att få mer tid för att slutföra arbetsuppgifter, eller dela upp olika moment med pauser emellan, skulle medföra att de både mår bättre och kan prestera bättre i skolan. Informanterna uttrycker också att det är viktigt att de blir lyssnade på och att man tar deras mående på allvar.        Elever som lider av hjärntrötthet har behov som många gånger inte behöver vara så svåra för skolan att anpassa sig till men dessa elever kan bli missförstådda, då kunskap om hjärntrötthet inte är så utbredd. Känslighet för mycket ljud, mycket information och högt tempo gör dem sårbara. Då vi i skolan ska utforma lärmiljöer där alla elever ges möjlighet att prestera utifrån sina förutsättningar är det viktigt att sprida kunskap om hjärntrötthet. Nyckelord Anpassningar, barncancer, hjärnskakning, hjärntrötthet, pauser