Interventions which ameliorate the late effects of cancer treatment, and promote adjustment for children coping with cancer are needed (Kazak, 2005). The Beads of Courage® (BOC) Program (Baruch, 2002), is an arts-in-health program developed to strengthen resilience and alleviate suffering in children receiving treatment for cancer. Through the BOC Program, children receive different colored beads that serve as visible symbols of the many procedures they experience during cancer treatment. Despite the wide use of the BOC Program by more than 70 children's hospitals, the BOC Program has never been formally evaluated.The purpose of this study was to evaluate the BOC Program using qualitative descriptive methods. The specific aims of the program evaluation were to: 1) Describe the BOC Program process; 2) Describe how the BOC Program is implemented; and 3) Describe the potential outcomes of the BOC Program.Data collection methods with four BOC Program stakeholders included: Semi-structured interviews with children (N=6); focus groups with clinicians (N=10) and parents (N=5); and open-ended surveys with clinicians (N=9), parents (N=8) and bead artists (N=6). Findings indicate that the BOC Program is operating according to design (process and implementation), and the overall satisfaction and perceived worth of the BOC Program is high. Emerging categories from the content analysis describe the BOC Program as a form of narrative medicine that provides a reflective tool, a symbol of accomplishment, and joy and encouragement for children receiving treatment for cancer. Preliminary data support the BOC Program theory, with resilience-based protective factors (positive coping, derived meaning, social support) supported, and risk factors (uncertainty in illness, defensive coping) decreased in children who received the BOC Program. Future studies should include quantitative measures of factors of resilience to determine change over time in children receiving the BOC Program during cancer treatment. Findings from this study support theory development to further strengthen the body of knowledge on psychosocial adjustment issues for children coping with cancer. The findings also provide evidence to support the role that arts-in-health programs have in alleviating the experience of suffering in children coping with cancer.

Caring for children with cancer involves caring for the entire family. Treatment for childhood cancer is centralized in major centres. A phenomenological study was conducted to elicit the lived experience of parents caring for a child who had completed treatment for cancer who do not live near their child’s cancer treatment centre. Interviews with five parents exploring their recollections of parenting their child with cancer during and after treatment were conducted. Data analysis revealed the essence of the parents’ lived experience as a journey within a journey. Four themes characterized the essence of parents’ lived experience: (1) travelling for care, (2) learning to navigate their journey with healthcare providers, (3) coping with change, and (4) giving back. Similarities and differences between the findings from this study and other studies of families with childhood cancer are presented. Recommendations relating to nursing practice, education, research and healthcare policy are provided.

Caring for children with cancer involves caring for the entire family. Treatment for childhood cancer is centralized in major centres. A phenomenological study was conducted to elicit the lived experience of parents caring for a child who had completed treatment for cancer who do not live near their child’s cancer treatment centre. Interviews with five parents exploring their recollections of parenting their child with cancer during and after treatment were conducted. Data analysis revealed the essence of the parents’ lived experience as a journey within a journey. Four themes characterized the essence of parents’ lived experience: (1) travelling for care, (2) learning to navigate their journey with healthcare providers, (3) coping with change, and (4) giving back. Similarities and differences between the findings from this study and other studies of families with childhood cancer are presented. Recommendations relating to nursing practice, education, research and healthcare policy are provided.

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O adoecimento oncológico pode ser compreendido como significativo fator de risco ao desenvolvimento infanto-juvenil, fazendo-se relevante compreender as estratégias de organização psíquica diante do câncer e seu tratamento, para oferecer adequada assistência profissional a crianças e adolescentes com neoplasias. Em revisão sistemática da literatura científica nacional e internacional, notou-se que predominavam, nas pesquisas da área, temas relativos a dificuldades vivenciadas pelas crianças/adolescentes, dinâmica familiar, intervenções focais e enfrentamento do adoecimento, porém com diversidade de parâmetros e métodos, dificultando adequada avaliação das variáveis influentes no processo adaptativo de indivíduos em desenvolvimento acometidos pelo câncer. Nesse contexto, este trabalho teve por objetivo avaliar características de personalidade e recursos adaptativos de crianças e adolescentes em tratamento oncológico. Foram avaliados 40 escolares, de sete a 17 anos de idade, de ambos os sexos, residentes no interior do Estado de São Paulo, divididos em dois grupos: Grupo Clínico (G1, n=20, pacientes em tratamento oncológico em hospital-escola público) e Grupo de Comparação (G2, n=20, crianças e adolescentes com desenvolvimento típico, selecionados por balanceamento a partir das características etárias e de escolaridade de G1). Os participantes foram voluntários devidamente autorizados a participar do estudo por seus pais/responsáveis, bem como assentiram livremente com a pesquisa. Os instrumentos Critério de Classificação Econômica Brasil (CCEB), Inventário de Percepção de Suporte Familiar (IPSF), Inventário de Recursos do Ambiente Familiar (RAF) e o Questionário de Capacidades e Dificuldades (SDQ) foram aplicados individualmente com os pais/responsáveis, em ambiente adequado. O Teste das Matrizes Progressivas de Raven, Método de Rorschach (Escola Francesa) e Teste das Pirâmides Coloridas de Pfister foram aplicados com as crianças e adolescentes, também em sessões individuais realizadas em ambiente adequado. Os resultados foram sistematizados conforme respectivos padrões técnicos dos instrumentos utilizados, realizando-se análises descritivas (média e desviopadrão) e análises inferenciais (Teste t de Student ou Teste chi-quadrado, utilizando-se nível de significância de 5%), comparando G1 e G2. Os principais resultados indicaram predominância de semelhanças entre crianças e adolescentes que vivenciam o adoecimento oncológico e seus pares saudáveis, em termos de funcionamento psicológico geral. Foi verificado que, diante das demandas impostas pelo adoecimento e seu tratamento, crianças e adolescentes desenvolvem restrições em relação às manifestações emocionais, priorizando o autocontrole a partir da exacerbação do funcionamento lógico, com sinais de maior inibição e intelectualização nos participantes de G1. Depreende-se, portanto, que apesar do impacto do adoecimento oncológico, crianças e adolescentes em tratamento evidenciaram indicadores de manutenção do funcionamento adaptativo e preservação dos recursos familiares. Neste contexto, a inibição ou supressão de aspectos emocionais pareceu configurar possível fator protetor ao desenvolvimento, na medida em que os demais elementos do funcionamento mental, essenciais para adaptação ao tratamento oncológico, sinalizaram-se preservados. / Introduction: Cancer may affect child development. Therefore, it is important to understand strategies of psychic organization experienced when children and adolescents face oncological treatment, aiming to improve professional assistance. In a systematic review of national and international bibliographic databases, some themes prevailed, such as difficulties experienced by children/adolescents; family dynamics; focus interventions; and coping. Also evidenced were the diversity of parameters and methodologies used in researches, especially in the field of chronic illness management. Objective: This study aimed to assess personality characteristics and adaptive resources of children and adolescents facing cancer treatment. Method: 40 children and teenagers, aging from 07 to 17 years, from both genders, living in the state of São Paulo, Brazil, were evaluated and divided into two groups: Clinical Group (G1, n=20, patients under oncological treatment in a public university hospital) and control group (G2, n=20, children and adolescents with typical development, selected to match age and schooling characteristics of G1). Participants freely consented to participate as volunteers and were properly authorized by their respective parents/guardians. The instruments Critério de Classificação Econômica Brasil (CCEB, Brazilian Criteria of Economic Classification), Inventário de Percepção de Suporte Familiar (IPSF, Perception of Family Support Inventory), Inventário de Recursos do Ambiente Familiar (RAF, Home Environment Resources Scale) and the Strengths and Difficulties Questionnaire (SDQ) were applied individually to parents/guardians in a suitable environment. The Raven\'s Progressive Matrices Test; Rorschach (French School) and Pfister Colored Pyramids Test were applied to the children and adolescents, also in individual sessions and in proper environment. Results are presented according to technical patterns created by the employed instruments. Data were analyzed by descriptive (mean and standard deviation) and inferential tests (Student\'s t test or chi-square test) and significance levels were fixed at 5% for comparisons between groups (G1 and G2). Results: The main results of this study indicate predominance of similarities between children and adolescents who experience oncological diseases and their healthy peers, in terms of overall psychological functioning. More specific analyses show that given the demands imposed by disease and treatment, subjects are found to develop restrictions in emotional manifestations, with control mostly based on logical function. Conclusions: Our results suggest that despite possible deleterious impact of the disease, children and adolescents facing cancer are able to maintain the adaptive function and preserve family resources. In this context, inhibition or suppression of emotional aspects may be considered as a protective factor for development, while other elements of mental functioning, essential for coping with cancer treatment, are preserved.

No description available.

Nearly one-third of all pediatric oncology patients die from their disease, so nurses need to have an evidence-based standard of practice to guide their role in end-of-life decision-making. The purpose of this integrative review is to analyze current research on end-of-life decision-making within pediatric oncology to create a practice guideline for nurses working with this patient population. Eleven studies were examined to identify nursing interventions regarding the role of the nurse in end-of-life care, the role of the nurse in end-of-life decision-making, parent involvement in end-of-life decision-making, and child involvement in end-of-life decision-making, including the child's ability to participate in end-of-life decision-making. Based on the findings, the researcher identified several interventions that can be used by nurses to facilitate end-of-life discussion and decision-making that includes both parent and, when appropriate, the child.

No description available.

No description available.

SAMMANFATTNING Bakgrund. I Sverige insjuknar årligen drygt 300 barn i cancer. Det saknas empiriska studier som beskriver de små barnens upplevelser av barnsjuksköterskans bemötande vid insjuknandet av cancer. Föräldrar till små barn med cancer har en avgörande roll i barnets liv och det är därför viktigt att belysa även deras upplevelser för att utveckla den barnonkologiska verksamheten samt öka familjens välbefinnande vid insjuknandet. Syfte. Syftet med studien var att beskriva barn och föräldrars upplevelse av barnsjuksköterskans bemötande inom barnonkologisk verksamhet. Metod. Studiens design var kvalitativ där data inhämtades 3-9 veckor efter diagnostillfället. Deltagarna som inkluderades var barn i åldern 1-5 år. Totalt deltog 13 barn samt 23 föräldrar i studien. Intervjuerna analyserades genom en deduktiv innehållsanalys utifrån Swansons caringteori. Resultat. I resultatet framkom vikten av att barnsjuksköterskan visade tilltro till barnet och föräldrarnas förmågor vid insjuknandet. Föräldrarna önskade att barnsjuksköterskan bibehöll en hoppfull attityd i bemötandet. Föräldrarna ville inge trygghet och inte hålla fast sitt sjuka barn vid svåra omvårdnadshandlingar. När familjerna upplevde barnsjuksköterskans närvaro och fokus på individen ökade välbefinnandet hos barnet och föräldrarna. Konklusion. Barnsjuksköterskans bemötande kan både främja eller hindra hälsa och välbefinnande. Barnsjuksköterskor måste visa tilltro till barnet och föräldrars förmåga genom att tillämpa barnets perspektiv samt ett barnperspektiv. Inom den barnonkologiska verksamheten krävs det vidareutbildade barnsjuksköterskor för att säkerställa god omvårdnad då ett litet barn insjuknat i cancer. / ABSTRACT Background. Each year approximately 300 children fall ill with cancer in Sweden. There is a lack of empirical studies describing the younger children's experiences of the pediatric nurse approach during cancer diagnosis. Parents of young children with cancer have a crucial role in the child's life and it is important to shed light on their experiences to develop the pediatric oncology and increase family well-being during the time of diagnosis. Aim. The aim of the study was to describe children and parents' perception of the pediatric nurse approach in pediatric oncology. Method. The study design was qualitative and the data were collected 3-9 weeks after diagnosis. Included participants were children aged 1-5. A total of 13 children and 23 parents took part in the study. The interviews were analyzed through a deductive content analysis based on Swanson’s caring theory. Results. The importance of the pediatric nurse believing the child and the parents' abilities during diagnosis. Parents of the children wished for the pediatric nurse to maintain a hopeful attitude in her approach. The parents felt a need to contribute the child with security and not hold the child during difficult caring actions. When families experienced the pediatric nurse’s presence and focus on the individual, it increased the well-being of the child and the parents. Conclusion. The pediatric nurse’s approach can either promote or prevent health and well-being. Pediatric nurses must maintain belief in the child and the parents' ability by applying the child's perspective as well as a children's perspective. Within the pediatric oncology, further trained pediatric nurses are required to ensure high quality care for a young child newly diagnosed with cancer.