Background: 250 children develops cancer in Sweden every year and 75 percent of these children survives. History show that the treatment for cancer has improve. Every child has at least one parent who is affected and who is associated with suffering during the child's cancer diagnosis. Aim :The aim was to illuminate parents' experiences of living with a child with cancer diagnosis. Method: A literature-based study. Qualitative content analysis of 10 qualitative articles. Results: The results are presented in four main themes: "The feeling of powerlessness", "The need of support", "Lives ups and downs" and "Changed life". Conclusion: The results show that parents of a child with cancer diagnosis describe many different emotions and a changed life. The parents feel powerless and have need of support in various forms. Parents get a new life to adapt to and see life and every day as unique.

Although the survival rate of childhood cancer is high, nearly two thirds of these survivors experience negative long-term secondary side effects from cancer treatments. Infertility is one such side effect that can have a prominent impact on quality of life as the patient ages. It is important for nurses working with pediatric oncology patients to provide the patient and family with education about risk for infertility and fertility preservation (FP) in order to allow families to make decisions about FP before cancer treatment starts. However, pediatric oncology nurses report being uneducated about FP guidelines and are hesitant to broach this subject with families. The purpose of this HIM thesis is to review nurse perceived barriers related to educating patients and their families about the risk for infertility following cancer treatments and FP and to make recommendations for improving communication between nurses and families about FP. A search was performed using CINAHL, PreCINAHL, PsychINFO, PsychARTICLES, and Medline databases and examined peer-reviewed quantitative and qualitative research studies. Key terms used in the database searches were ped' OR child', onco' OR cancer', fert', and nurs'. Findings indicated that there were many barriers for pediatric oncology nurses, which inhibited the discussion of FP with patients and families such as lack of knowledge and resources, provider attitudes toward FP, and patient factors. Based on the findings, the researcher identified several interventions to aid pediatric oncology nurses in overcoming these barriers to FP discussion.

O diagnóstico de neoplasia em crianças e adolescentes, bem como os cuidados oncológicos necessários, impõem aos pacientes e a suas famílias o convívio cotidiano com múltiplos eventos adversos ao desenvolvimento, que podem ser de natureza biológica, psíquica, social e econômica. Essa complexa realidade exigirá recursos e estratégias pessoais e familiares para positivo desfecho, superando situações de vulnerabilidade. Até o momento, apesar do crescente número de casos de câncer, encontra-se reduzida produção científica sistematizada no campo da Psico-oncologia Pediátrica sobre quais variáveis seriam as mais relevantes em termos de efeitos no desenvolvimento infantojuvenil, embora se reconheça importância dos recursos pessoais (incluindo características de personalidade), sócio-familiares e dos serviços de saúde. Nesse contexto, este trabalho objetivou avaliar longitudinalmente possíveis efeitos da vivência de adoecimento e cuidado oncológico sobre recursos pessoais, familiares e características de personalidade de crianças e adolescentes com câncer. Trata-se de estudo longitudinal, de natureza quantitativa, descritivo-comparativo e interpretativo, a partir de instrumentos de avaliação psicológica. Foram compostos dois de crianças e adolescentes, de sete a 17 anos, de ambos os sexos, bem como seus respectivos pais/responsáveis, compondo amostra de conveniência. O Grupo Clínico (G1, n=30, crianças/adolescentes com diagnóstico de neoplasia há pelo menos um mês) foi retirado de pacientes do Setor de Oncologia e Hematologia Pediátrica de um hospital-escola público, considerado serviço de referência na área. O Grupo de Comparação (G2, n=20, crianças/adolescentes com desenvolvimento típico), foi constituído de modo a ser balanceado em relação a idade, sexo e origem escolar (particular ou pública) a G1. Todos os voluntários (crianças/adolescentes e seus pais/responsáveis) responderam, individualmente e em ambiente adequado para avaliação psicológica, a uma bateria de instrumentos avaliativos, aplicados em dois momentos, nomeados nesse estudo como Fase 1 (recorte transversal) e Fase 2 (recorte longitudinal, após intervalo mínimo de seis meses da primeira avaliação). Os pais/responsáveis responderam a: Critério de Classificação Econômica Brasil, Questionário de Capacidades e Dificuldades (SDQ), Inventário de Recursos do Ambiente Familiar (RAF), Escala de Eventos Adversos (EEA), Escala de Adversidades Crônicas (EAC) e Inventário de Percepção do Suporte Familiar (IPSF). Na criança/adolescente foram administrados: Matrizes Progressivas de Raven (Coloridas ou Escala Geral), Método de Rorschach (Escola Francesa) e Teste das Pirâmides Coloridas de Pfister. A aplicação e a avaliação dos instrumentos seguiram seus respectivos padrões técnico-científicos, realizando-se análises descritivas e comparativas de G1 e G2 (Teste t de Student ou Teste de Wilcoxon, p0,05%), nas duas fases do estudo. Os resultados apontaram, como síntese das duas fases avaliativas, sinais de preservação dos recursos familiares e cognitivo/afetivos das crianças/adolescentes com câncer, com manutenção do funcionamento adaptativo, embora com impacto negativo na percepção de si e de sua identificação com o humano, tendendo a maior mobilização emocional, com tensão e ansiedade em seus esforços adaptativos, identificados pelos pais/responsáveis como indicadores de dificuldades em termos de saúde mental, comparativamente ao Grupo de Comparação. O Grupo Clínico tendeu a recorrer mais a estratégias defensivas baseadas em mecanismos repressivos e de racionalização, inibindo expressões afetivas no ambiente, favorecendo-lhes adaptação ao contexto de vida. Estes achados empíricos evidenciaram, numa perspectiva longitudinal, os recursos e os esforços adaptativos de crianças/adolescentes que convivem com o diagnóstico oncológico, bem como suas famílias. Foi possível apontar a relevância da sistemática avaliação e reavaliação da complexa rede de variáveis envolvidas nesses processos, atestando a contribuição dos métodos projetivos no campo da Psico-Oncologia Pediátrica. / The neoplasia diagnosis in children and adolescentes, as well as the oncological care needed, impose to patients and their families the daily living with multiple adverse events to the development, that may be of biological, psychic, social and economic nature. This complex reality will demand personal and family resources and strategies for a positive outcome, overcoming situations of vulnerability. To date, despite the growing number of cancer cases, there is a reduced systematized scientific production in the field of Pediatric Psycho-Oncology about what variables would be the most relevant in terms of effects on child and adolescent development, although the importance of personal resources (including personality characteristics), socio-family and health services is recognized. In this contexto, this study aimed to longitudinally assess possible effects of the experience of illness and cancer care on personal, family and personality characteristics of children and adolescents with cancer. This is a longitudinal study, of a quantitative, descriptive-comparative and interpretative nature, based on psychological assessment instruments. The were composed two groups of children and adolescents, from seven to 17 years of age, of both sexes, as well as their respective parents/guardians, composing a convenience sample. The Clinical Group (G1, n=30, children/adolescents with diagnosis of neoplasia for at least one month) was composed from patients of the Oncology and Pediatric Hematology Sector of a public school hospital, considered a reference service in the area. The Comparison Group (G2, n=20, children/adolescents with typical development) was constituted in order to be balanced against age, gender and school origin (private or public) to G1. All volunteers (children/adolescents and their parents/guardians) responded, individually and in a suitable environment for psychological assessment, to a battery of assessment instruments, applied in two moments, named in this study as Phase 1 (transversal cut) and Phase 2 (longitudinal cut, after a minimum interval of six months of the first assessment). Parents/guardians responded to: Brazil\'s Economic Classification Criteria, Capacities and Difficulties Questionnaire (SDQ), Family Environment Resource Inventory (RAF), Adverse Event Scale (EEA), Chronic Adversity Scale (EAC), and Inventory of Perception of Family Support (IPSF). In the child/adolescent were administered: Progressive Matrices of Raven (Colored or General Scale), Method of Rorschach (French School) and Test of Colored Pyramids of Pfister. The application and assessment of the instruments followed their respective technical-scientific standards. Descriptive and comparative analyzes of G1 and G2 (Student\'s t test or Wilcoxon test, p0.05%) were carried out in both phases of the study. The results showed, as a synthesis of the two evaluative phases, signs of preservation of the family and cognitive/affective resources of the children/adolescents with cancer, with maintenance of the adaptative functioning, although with a negative impact on the perception of self and its identification with the human, tending to greater emotional mobilization, with tension and anxiety in their adaptive efforts, identified by parents/guardians as indicators of difficulties in terms of mental health, compared to the Comparison Group. The Clinical Group tended to resort more to defensive strategies based on repressive mechanisms and rationalization, inhibiting affective expressions in the environment, favoring adaptation to the context of life. These empirical findings have evidenced, from a longitudinal perspective, the resources and the adaptive efforts of children/adolescents living with cancer diagnosis, as well as their families. It was possible to point out the relevance of systematic assessment and re-assessment of the complex network of variables involved in these processes, attesting the contribution of projective methods in the field of Pediatric Psycho-Oncology.

O diagnóstico de neoplasia em crianças e adolescentes, bem como os cuidados oncológicos necessários, impõem aos pacientes e a suas famílias o convívio cotidiano com múltiplos eventos adversos ao desenvolvimento, que podem ser de natureza biológica, psíquica, social e econômica. Essa complexa realidade exigirá recursos e estratégias pessoais e familiares para positivo desfecho, superando situações de vulnerabilidade. Até o momento, apesar do crescente número de casos de câncer, encontra-se reduzida produção científica sistematizada no campo da Psico-oncologia Pediátrica sobre quais variáveis seriam as mais relevantes em termos de efeitos no desenvolvimento infantojuvenil, embora se reconheça importância dos recursos pessoais (incluindo características de personalidade), sócio-familiares e dos serviços de saúde. Nesse contexto, este trabalho objetivou avaliar longitudinalmente possíveis efeitos da vivência de adoecimento e cuidado oncológico sobre recursos pessoais, familiares e características de personalidade de crianças e adolescentes com câncer. Trata-se de estudo longitudinal, de natureza quantitativa, descritivo-comparativo e interpretativo, a partir de instrumentos de avaliação psicológica. Foram compostos dois de crianças e adolescentes, de sete a 17 anos, de ambos os sexos, bem como seus respectivos pais/responsáveis, compondo amostra de conveniência. O Grupo Clínico (G1, n=30, crianças/adolescentes com diagnóstico de neoplasia há pelo menos um mês) foi retirado de pacientes do Setor de Oncologia e Hematologia Pediátrica de um hospital-escola público, considerado serviço de referência na área. O Grupo de Comparação (G2, n=20, crianças/adolescentes com desenvolvimento típico), foi constituído de modo a ser balanceado em relação a idade, sexo e origem escolar (particular ou pública) a G1. Todos os voluntários (crianças/adolescentes e seus pais/responsáveis) responderam, individualmente e em ambiente adequado para avaliação psicológica, a uma bateria de instrumentos avaliativos, aplicados em dois momentos, nomeados nesse estudo como Fase 1 (recorte transversal) e Fase 2 (recorte longitudinal, após intervalo mínimo de seis meses da primeira avaliação). Os pais/responsáveis responderam a: Critério de Classificação Econômica Brasil, Questionário de Capacidades e Dificuldades (SDQ), Inventário de Recursos do Ambiente Familiar (RAF), Escala de Eventos Adversos (EEA), Escala de Adversidades Crônicas (EAC) e Inventário de Percepção do Suporte Familiar (IPSF). Na criança/adolescente foram administrados: Matrizes Progressivas de Raven (Coloridas ou Escala Geral), Método de Rorschach (Escola Francesa) e Teste das Pirâmides Coloridas de Pfister. A aplicação e a avaliação dos instrumentos seguiram seus respectivos padrões técnico-científicos, realizando-se análises descritivas e comparativas de G1 e G2 (Teste t de Student ou Teste de Wilcoxon, p0,05%), nas duas fases do estudo. Os resultados apontaram, como síntese das duas fases avaliativas, sinais de preservação dos recursos familiares e cognitivo/afetivos das crianças/adolescentes com câncer, com manutenção do funcionamento adaptativo, embora com impacto negativo na percepção de si e de sua identificação com o humano, tendendo a maior mobilização emocional, com tensão e ansiedade em seus esforços adaptativos, identificados pelos pais/responsáveis como indicadores de dificuldades em termos de saúde mental, comparativamente ao Grupo de Comparação. O Grupo Clínico tendeu a recorrer mais a estratégias defensivas baseadas em mecanismos repressivos e de racionalização, inibindo expressões afetivas no ambiente, favorecendo-lhes adaptação ao contexto de vida. Estes achados empíricos evidenciaram, numa perspectiva longitudinal, os recursos e os esforços adaptativos de crianças/adolescentes que convivem com o diagnóstico oncológico, bem como suas famílias. Foi possível apontar a relevância da sistemática avaliação e reavaliação da complexa rede de variáveis envolvidas nesses processos, atestando a contribuição dos métodos projetivos no campo da Psico-Oncologia Pediátrica. / The neoplasia diagnosis in children and adolescentes, as well as the oncological care needed, impose to patients and their families the daily living with multiple adverse events to the development, that may be of biological, psychic, social and economic nature. This complex reality will demand personal and family resources and strategies for a positive outcome, overcoming situations of vulnerability. To date, despite the growing number of cancer cases, there is a reduced systematized scientific production in the field of Pediatric Psycho-Oncology about what variables would be the most relevant in terms of effects on child and adolescent development, although the importance of personal resources (including personality characteristics), socio-family and health services is recognized. In this contexto, this study aimed to longitudinally assess possible effects of the experience of illness and cancer care on personal, family and personality characteristics of children and adolescents with cancer. This is a longitudinal study, of a quantitative, descriptive-comparative and interpretative nature, based on psychological assessment instruments. The were composed two groups of children and adolescents, from seven to 17 years of age, of both sexes, as well as their respective parents/guardians, composing a convenience sample. The Clinical Group (G1, n=30, children/adolescents with diagnosis of neoplasia for at least one month) was composed from patients of the Oncology and Pediatric Hematology Sector of a public school hospital, considered a reference service in the area. The Comparison Group (G2, n=20, children/adolescents with typical development) was constituted in order to be balanced against age, gender and school origin (private or public) to G1. All volunteers (children/adolescents and their parents/guardians) responded, individually and in a suitable environment for psychological assessment, to a battery of assessment instruments, applied in two moments, named in this study as Phase 1 (transversal cut) and Phase 2 (longitudinal cut, after a minimum interval of six months of the first assessment). Parents/guardians responded to: Brazil\'s Economic Classification Criteria, Capacities and Difficulties Questionnaire (SDQ), Family Environment Resource Inventory (RAF), Adverse Event Scale (EEA), Chronic Adversity Scale (EAC), and Inventory of Perception of Family Support (IPSF). In the child/adolescent were administered: Progressive Matrices of Raven (Colored or General Scale), Method of Rorschach (French School) and Test of Colored Pyramids of Pfister. The application and assessment of the instruments followed their respective technical-scientific standards. Descriptive and comparative analyzes of G1 and G2 (Student\'s t test or Wilcoxon test, p0.05%) were carried out in both phases of the study. The results showed, as a synthesis of the two evaluative phases, signs of preservation of the family and cognitive/affective resources of the children/adolescents with cancer, with maintenance of the adaptative functioning, although with a negative impact on the perception of self and its identification with the human, tending to greater emotional mobilization, with tension and anxiety in their adaptive efforts, identified by parents/guardians as indicators of difficulties in terms of mental health, compared to the Comparison Group. The Clinical Group tended to resort more to defensive strategies based on repressive mechanisms and rationalization, inhibiting affective expressions in the environment, favoring adaptation to the context of life. These empirical findings have evidenced, from a longitudinal perspective, the resources and the adaptive efforts of children/adolescents living with cancer diagnosis, as well as their families. It was possible to point out the relevance of systematic assessment and re-assessment of the complex network of variables involved in these processes, attesting the contribution of projective methods in the field of Pediatric Psycho-Oncology.