The Sleep Patterns of Children and Adolescents with Chronic Conditions and Their Families: An Integrative Literature Review.

Sleep is of vital necessity for health, and it has a restorative and protective function for children and adolescents with chronic conditions and their families. The purpose of this study was to identify the scientific production on sleep patterns in children and adolescents with chronic conditions and their families. This integrative review was conducted between March and June 2022 using the databases of MEDLINE, Web of Science, CINAHL and PsycINFO. The articles included were original papers published between January 2007 and mid-2022. Excluded were review studies that did not evaluate sleep and whose participants did not have chronic conditions or were not children, adolescents and/or their families. The searches returned 814 abstracts. After exclusions, 47 studies were selected to be read in full; of these, 29 were selected and were grouped empirically into four categories: major alterations in the sleep patterns of children and adolescents with chronic conditions; the relationship between sleep disorders and symptoms in children and adolescents with chronic conditions; the impaired sleep patterns of families of children and adolescents with chronic conditions; and sleep alterations and their relationship with other problems in families of children and adolescents with chronic conditions. All studies showed sleep pattern impairment in children and adolescents with chronic conditions as well as their families.

Experience of hope in older people with chronic illness: A meta-synthesis.

BACKGROUND: The increase in life expectancy has contributed to an increase in the number of older people, but this population has to learn to live with at least one chronic illness. Thus, hope has become an important resource for the older adult to face the repercussions of chronic illness. OBJECTIVE: To synthesise qualitative evidence on the experience of hope in older people with chronic illness. METHODS: This meta-synthesis included qualitative studies which present the experiences of hope in older people diagnosed with at least one chronic illness. The searches were made from six databases, guided by the SPIDER tool. The identified articles were then independently screened by two reviewers. The results were analysed according to the thematic synthesis approach. RESULTS: Eighteen articles were included, and four analytical themes were constructed. The results allow us to understand that older people live with long-term conditions and hope for an ordinary life. To react to new changes and to maintain hope, they create goals that motivate them in daily life. The treatment is initially seen as a salvation, but the information acquired with the evolution of the illness modifies this perception. In addition, the uncertainty about the success of the treatment creates conflict in their hope. In the support and care of older people in the new context of illness, meaningful relationships strengthen hope most of the time. There is still the hope of being reconciled with death, but there are times when suffering overcomes the hope of living. CONCLUSIONS: This meta-synthesis highlights that the experience of hope in older people is dynamic and influenced by the context of changes related to illness, treatment, significant relationships and proximity to death. IMPLICATIONS FOR PRACTICE: A better understanding of the role and characteristics of hope in older people with chronic illness may help to develop more effective interventions to promote and maintain hope.

Five tips for conducting remote qualitative data collection in COVID times: theoretical and pragmatic considerations.

OBJECTIVE: To provide five methodological and pragmatic tips for conducting remote qualitative data collection during the context of the COVID-19 pandemic. METHOD: The tips presented in this article are drawn from insights of our own experiences as researchers conducting remote qualitative research and from the evidence from the literature on qualitative methods. The relevant literature was identified through searches using relevant keywords in the following databases: CINAHL, PubMed, SCOPUS, and Web of Science. Searches were limited to articles in English and Portuguese, published from 2010 to 2021, to ensure a current understanding of the phenomenon. RESULTS: Five tips are provided: 1) Pay attention to ethical issues; 2) Identify and select potential participants; 3) Choose the type of remote interview; 4) Be prepared to conduct the remote interview; and 5) Build rapport with the participant. CONCLUSION: Despite the challenges in conducting remote data collection, strengths are also acknowledged and our experience has shown that it is feasible to recruit and interview participants remotely. The discussions presented in this article will benefit, now and in the future, other research teams who may consider collecting data for their qualitative studies remotely.

Body image experience of women with breast cancer: A meta-synthesis.

BACKGROUND: Body image is a multidimensional concept that involves the mental image of the human body and the feeling of being oneself throughout existence. Treatment for breast cancer causes several bodily changes that affect women's body image. AIMS: This meta-synthesis aims to synthesise and interpret primary qualitative studies on the experience of body image in women undergoing treatment for breast cancer. METHODS: A qualitative meta-synthesis was conducted employing systematic searches in six databases (PubMed, CINAHL, SCOPUS, Web of Science, PsycINFO, and LILACS). Data analysis was performed according to thematic synthesis. RESULTS: Forty studies were included. Five descriptive themes were identified: (1) actively saying goodbye to body image; (2) the rupture of body image; (3) the sacrifice of body image in exchange for life; (4) body image as a vehicle for social expression; and (5) resignation of the alterated body image. These themes were understood through one analytical theme: Half-woman: body image of the woman with breast cancer. CONCLUSION: The experience of body image in the context of breast cancer is a dynamic phenomenon, which involves dismissal, rupture, and resignation and occurs mediated by interpersonal contact.

Functioning of structurally diverse families living with adolescents and children with chronic disease: A metasynthesis.

PURPOSE: The diagnosis of children and adolescents with a chronic disease may affect the entire family system. When families have diverse structures, additional tensions can be present and affect the balance of family functioning. This metasynthesis aims to analyze and synthesize qualitative evidence on the functioning of structurally diverse families who live with adolescents and children with chronic disease. DESIGN: Qualitative metasynthesis. METHODS: Systematic searches up to 2021 were performed in PubMed, CINAHL, PsycINFO, SCOPUS, LILACS, and Web of Science and supplemented by manual search strategies. It followed guidelines from the statement in the Enhancing Transparency in Reporting the Synthesis of Qualitative Research (ENTREQ). A quality appraisal of each study was undertaken using the Critical Appraisal Skills Programme. Data synthesis was conducted according to the thematic synthesis approach. FINDINGS: Of a total of 6538 references identified, 9 studies were included in the metasynthesis. The thematic synthesis enabled the construction of three analytical themes: "Family structural changes and weakened co-parenting"; "Family rearrangements and the challenges faced by families"; and "Committed to healthy family functioning for the child's well-being: Searching for family homeostasis". CONCLUSIONS: The themes showed that the causes of the rupture in the family unit interfere in family functioning, making it ineffective. In most families, family functioning is centered on the mothers. Faced with the need to care for children and adolescents and to control chronic disease, structurally diverse families need to adjust their family functioning and search for family homeostasis. CLINICAL RELEVANCE: The results of this review can support nurses to target their care toward these families and formulate effective interventions that promote, strengthen, or maintain the healthy functioning of these families.

Interface trabalho-tratamento hemodialítico em pacientes com insuficiência renal crônica: revisão de escopo / Interfaz trabajo-tratamiento hemodialítico en pacientes con insuficiencia renal crónica: revisión de alcance / Work-hemodialysis treatment interface in patients with chronic kidney disease: a scoping review

Resumo Objetivo Analisar as evidências científicas sobre o impacto do tratamento hemodialítico no trabalho de pacientes com insuficiência renal crônica. Métodos Revisão de escopo realizada por meio de buscas em cinco bases de dados: PubMed, LILACS, CINAHL, PsyInfo e Scopus. Foram incluídos estudos publicados entre 2010 e 2020, nos idiomas português, espanhol e inglês, de abordagem qualitativa ou quantitativa, com pacientes em tratamento hemodialítico para insuficiência renal crônica, que tivessem foco no trabalho, emprego ou produtividade. Resultados Os 18 estudos incluídos na revisão mostram o impacto do tratamento hemodialítico na relação com o trabalho e as razões associadas à desempregabilidade. Tais razões envolvem características sociodemográficas, debilidade física, tratamento e apoio familiar e do empregador. Conclusão Após o início da hemodiálise, nota-se o comprometimento da capacidade funcional tanto física como psicológica dos pacientes, sendo necessárias alterações nos hábitos de vida em decorrência das restrições impostas pela insuficiência renal crônica e da diminuição da produtividade.

Resumen Objetivo Analizar las evidencias científicas sobre el impacto del tratamiento hemodialítico en el trabajo de pacientes con insuficiencia renal crónica. Métodos Revisión de alcance realizada mediante búsquedas en cinco bases de datos: PubMed, LILACS, CINAHL, PsyInfo y Scopus. Se incluyeron estudios publicados entre 2010 y 2020, en idioma portugués, español e inglés, de enfoque cualitativo o cuantitativo, con pacientes bajo tratamiento hemodialítico por insuficiencia renal crónica, que estuvieran centrados en el trabajo, empleo o productividad. Resultados Los 18 estudios incluidos en la revisión muestran el impacto del tratamiento hemodialítico en la relación con el trabajo y las razones asociadas al desempleo. Estas razones incluyen características sociodemográficas, debilidad física, tratamiento y apoyo familiar y del empleador. Conclusión Después del inicio de la hemodiálisis, se observa la capacidad funcional de los pacientes comprometida, tanto la física como la psicológica, por lo que los cambios en los hábitos de vida se hacen necesarios como consecuencia de las restricciones impuestas por la insuficiencia renal crónica y de la reducción de la productividad.

Abstract Objective To analyze the scientific evidence on the impact of hemodialysis treatment on the work of patients with chronic kidney disease. Methods This is a scoping review carried out through searches in five databases: PubMed, LILACS, CINAHL, PsyInfo and Scopus. We included studies published between 2010 and 2020, in Portuguese, Spanish and English, with a qualitative or quantitative approach, with patients undergoing hemodialysis for chronic kidney failure, who focused on work, employment or productivity. Results The 18 studies included in the review show the impact of hemodialysis treatment on the relationship with work and the reasons associated with unemployment. Such reasons involve sociodemographic characteristics, physical weakness, treatment and family and employer support. Conclusion After starting hemodialysis, we identified impairment in patients' functional capacity, both physical and psychological, requiring changes in life habits due to restrictions imposed by chronic kidney disease and decreased productivity.

Five tips for conducting remote qualitative data collection in COVID times: theoretical and pragmatic considerations / Cinco dicas para realizar coleta remota de dados qualitativos em tempos de COVID: considerações teóricas e pragmáticas / Cinco sugerencias para realizar recolección remota de datos cualitativos en tiempos de COVID: consideraciones teóricas y pragmáticas

ABSTRACT Objective: To provide five methodological and pragmatic tips for conducting remote qualitative data collection during the context of the COVID-19 pandemic. Method: The tips presented in this article are drawn from insights of our own experiences as researchers conducting remote qualitative research and from the evidence from the literature on qualitative methods. The relevant literature was identified through searches using relevant keywords in the following databases: CINAHL, PubMed, SCOPUS, and Web of Science. Searches were limited to articles in English and Portuguese, published from 2010 to 2021, to ensure a current understanding of the phenomenon. Results: Five tips are provided: 1) Pay attention to ethical issues; 2) Identify and select potential participants; 3) Choose the type of remote interview; 4) Be prepared to conduct the remote interview; and 5) Build rapport with the participant. Conclusion: Despite the challenges in conducting remote data collection, strengths are also acknowledged and our experience has shown that it is feasible to recruit and interview participants remotely. The discussions presented in this article will benefit, now and in the future, other research teams who may consider collecting data for their qualitative studies remotely.

RESUMEN Objetivo: Proporcionar cinco consejos metodológicos y pragmáticos para el manejo de la recogida de datos cualitativos durante el contexto de la pandemia de COVID-19. Método: Los consejos presentados en este artículo son extraídos de insights de nuestras propias experiencias como investigadores que realizan investigaciones cualitativas remotas y de la evidencia de la literatura sobre métodos cualitativos. La literatura relevante fue identificada a través de búsquedas utilizando palabras clave relevantes en las siguientes bases de datos: CINAHL, PubMed, SCOPUS y Web of Science. Las búsquedas se limitaron a artículos en inglés y portugués publicados entre 2010 y 2021 para asegurar una comprensión actual del fenómeno. Resultados: Se ofrecen cinco consejos: 1) Preste atención a las cuestiones éticas; 2) Identifique y seleccione potenciales participantes; 3) Escoja el tipo de entrevista remota; 4) Esté preparado para coordinar la entrevista remota; y 5) Promueva el vínculo con su participante. Conclusiones: A pesar de los desafíos en el manejo de la recogida remota de datos, también se reconocen las fortalezas y nuestra experiencia ha demostrado que es viable reclutar y entrevistar participantes remotamente. Las discusiones presentadas en este artículo beneficiarán, ahora y en el futuro, a otros equipos de investigación que puedan considerar recopilar datos para sus estudios cualitativos de forma remota.

RESUMO Objetivo: Fornecer cinco dicas metodológicas e pragmáticas para conduzir coleta remota de dados qualitativos durante o contexto da pandemia de COVID-19. Método: As dicas apresentadas neste artigo são extraídas de insights de nossas próprias experiências como pesquisadores conduzindo pesquisas qualitativas remotas e das evidências da literatura sobre métodos qualitativos. A literatura relevante foi identificada por meio de pesquisas usando palavras-chave relevantes nas seguintes bases de dados: CINAHL, PubMed, SCOPUS e Web of Science. As buscas foram limitadas a artigos em inglês e português publicados de 2010 a 2021 para garantir uma compreensão atual do fenômeno. Resultados: Cinco dicas são fornecidas: 1) Esteja atento às questões éticas; 2) Identifique e selecione potenciais participantes; 3) Escolha o tipo de entrevista remota; 4) Esteja preparado para conduzir a entrevista remota; e 5) Estabeleça previamente vínculo com o participante. Conclusão: Apesar dos desafios na condução da coleta remota de dados, os pontos fortes também são reconhecidos e nossa experiência tem mostrado que é viável recrutar e entrevistar participantes remotamente. As discussões apresentadas neste artigo beneficiarão, atualmente e no futuro, outras equipes de pesquisa que possam considerar a coleta de dados para seus estudos qualitativos remotamente.

Parental psychosocial needs in Brazilian paediatric intensive care units.

BACKGROUND: Having children admitted in the intensive care unit is a demanding experience for parents. They encounter several difficulties during this process, and it is important to properly identify their psychosocial needs for the health team to address appropriately. OBJECTIVE: The aim of the study is to identify the psychosocial needs encountered by parents of children in pediatric intensive care units in Brazil. METHODS: A descriptive study with a qualitative approach was used to increase understanding of psychosocial experiences of parents. Individual semi-structured interviews were conducted with 11 parents of hospitalized children in pediatric intensive care units in Brazil. Thematic analysis was used to analyze the data. The university ethics review committee approved the research protocol. All parents were informed on study details and provided written consent prior to the interview. RESULTS: Four themes were constructed: 1) Support from family and peers; 2) Support from the healthcare team; 3) Parental role; and 4) Emotional recovery. Parents expressed diverse psychosocial needs based on family and peer social support, child's clinical condition, as well as the structure, norms, and routines of health care teams during hospitalization. CONCLUSIONS: The findings highlight the importance of nursing assessment of psychosocial experiences encountered by parents of children in pediatric intensive care units, which will guide planning of individualized interventions and to increase family-centered care in pediatric intensive care units.

Use of continuous subcutaneous insulin infusion in children and adolescents with type 1 diabetes mellitus: a systematic mapping review.

BACKGROUND: Among the treatments for type 1 diabetes mellitus (T1DM), Continuous Subcutaneous Insulin Infusion (CSII) is a device that infuses insulin through the subcutaneous tissue in an uninterrupted manner and that comes closest to the physiological secretion of insulin. The use of CSII can provide the family with greater security and children and adolescents have more autonomy in relation to the treatment of T1DM. There is a lack of reviews that systematically gather the mounting evidence about the use of CSII in children and adolescents with T1DM. Therefore, the aim of this review was to group and describe primary and secondary studies on the use of CSII in children and adolescents with T1DM. METHODS: A systematic mapping review was performed based on searches in the following databases: PubMed, Embase, CINAHL, Lilacs and PsycINFO, using a combination of descriptors and keywords. The screening of the studies was carried out with the aid of the Rayyan software and reading in full was conducted independently by two reviewers. The data extraction of the studies was performed using an extraction tool adapted and validated by researchers specialized in diabetes. The data were analyzed according to the content analysis technique. The map from geocoding of the studies was produced using the ArcGis 10.5 software. RESULTS: A total of 113 studies were included in the review, including primary studies, literature reviews and gray literature publications. The content analysis of the results of the studies allowed for the identification of four categories: 1) metabolic control; 2) support networks; 3) benefits of using CSII; and 4) challenges of using CSII, each category having its respective subcategories. The review also made it possible to conduct a rigorous mapping of the literature on the use of CSII considering the location of development and the design of the studies. CONCLUSIONS: The use of CSII should be indicated by health professionals able to prepare children, adolescents, and their families for the treatment of T1DM, and, despite being a technological device, it may not be suitable for the entire pediatric population.

Searching for a harmonious survival: the experience of quality of life of urological cancer survivors.

PURPOSE: This study aimed to analyze the experience of quality of life for urological cancer survivors. METHODS: This is a qualitative narrative research based on the experience-centered approach. Twenty-one semi-structured face-to-face interviews were conducted with 12 survivors of urological cancer at different survival seasons. Participants were recruited from the convenience sampling. The thematic analysis approach was used to analyze the data. The findings are presented as narrative syntheses. The standards for reporting qualitative research (SPQR) were used in this study. RESULTS: Two narrative syntheses were constructed: (1) Rupture in the different dimensions of QoL; and (2) QoL: Searching for a harmonious survival, each presenting their respective sub-themes. After the rupture in the different dimensions of QoL, the survivors resigned themselves and searched for a harmonious survival despite the physical, social, and psychological changes imposed by cancer treatments. Survivors achieved a new meaning of QoL with the support of family, hope, and spirituality. CONCLUSIONS: The results highlight the changes experienced by survivors in different dimensions of QoL and the search for harmonious survival. Based on QoL experience reported in this study, health professionals can plan survival care and interventions that mitigate the consequences of treatment on QoL.

(Re)Establishment of fatherhood among fathers of children with mental disorders: A qualitative metasynthesis.

This metasynthesis synthesized and interpreted qualitative research results on the experience of fathers who care for children with mental disorders. It followed the guidelines from the Enhancing Transparency in Reporting the Synthesis of Qualitative Research statement. A search was conducted in five databases. The Critical Appraisal Skills Programme qualitative research checklist was used to evaluate the quality of the studies, and the Confidence in the Evidence from Reviews of Qualitative Research (Grade-CERQual) approach was used to assess review findings. Thematic analysis of 12 articles included yielded the theme (re)establishment of fatherhood and four subthemes: redefinition of expectations, redefinition of the fatherhood role, benefits achieved with increased father involvement, and strengths and challenges in fatherhood, all of which demonstrated how repercussions from diagnosis and redefinition of expectations of masculinity and fatherhood affected the way fathers exercise fatherhood. Fathers were participative and attentive to their child's needs, even in a challenging context demanding integration of care with work obligations. This metasynthesis highlights challenges faced by fathers in acquiring new skills and competencies while caring for their children. The findings identify a need for interventions to facilitate fathers' involvement in caring for their children.

Childhood cancer survival: Emerging reflections on pediatric oncology nursing. / Sobrevivência ao câncer infantojuvenil: reflexões emergentes à enfermagem em oncologia pediátrica.

The aim of this study is to analyze and critically reflect on childhood cancer survival, including conceptual aspects, repercussions, survival care, and challenges. This is a theoretical and reflective study, based on the scientific literature on the subject and on the researchers' experience. Childhood cancer survival is conceptualized as the process of living beyond the oncological diagnosis. A person is considered a cancer survivor from the diagnosis until the end of life and is at high risk of experiencing physical, psychosocial, and economic effects. Therefore, survival care shall minimize, as far as possible, these impacts throughout life. Such care includes an action plan to track and treat the persistent effects of therapy, preventing diseases and promoting healthy behaviors, not being restricted to monitoring oncological recurrence. In the national setting, challenges persist, such as the scarcity of policies to guide comprehensive, good quality, and coordinated survival care. Despite these challenges, the nurse occupies a privileged position and is competent to implement survival care and manage the effects related to cancer treatment.

O objetivo deste estudo é analisar e refletir criticamente sobre a sobrevivência ao câncer infantojuvenil, incluindo aspectos conceituais, repercussões, cuidados de sobrevivência e desafios. Estudo teórico e reflexivo, fundamentado na literatura científica sobre a temática e na experiência dos pesquisadores. A sobrevivência ao câncer infantojuvenil é conceituada como o processo de viver além do diagnóstico oncológico. Uma pessoa é considerada sobrevivente de câncer desde o diagnóstico até o final da vida e tem risco elevado de desenvolver efeitos físicos, psicossociais e econômicos. Portanto, cuidados de sobrevivência devem minimizar, na medida do possível, essas repercussões ao longo da vida. Esses cuidados incluem um plano de ações para rastreamento e tratamento dos efeitos persistentes da terapêutica, prevenção de doenças e promoção de comportamentos saudáveis, não se restringindo ao monitoramento da recorrência oncológica. No contexto nacional, desafios persistem, como a escassez de políticas que orientem os cuidados de sobrevivência de qualidade, abrangentes e coordenados. Apesar destes desafios, o enfermeiro ocupa posição privilegiada e é competente para implementar cuidados de sobrevivência e gerenciamento dos efeitos relacionados ao tratamento oncológico.

El objetivo de este estudio es analizar y reflexionar críticamente acerca de la supervivencia al cáncer infantojuvenil sobre todo en los aspectos conceptuales, repercusiones, cuidados de supervivencia y desafíos. Se trata de estudio teórico y reflexivo sobre el tema con fundamentación en la literatura científica y en la experiencia de los investigadores. La supervivencia al cáncer infantojuvenil se define como el proceso de vivir más allá del diagnóstico oncológico. A uno se le considera superviviente de cáncer desde su diagnóstico hasta el final de su vida con riesgos elevados de desarrollar efectos físicos, psicosociales y económicos. Por lo tanto, cuidados de supervivencia deben minimizar, cuando posible, esas repercusiones a lo largo de la vida. Esos cuidados incluyen un plan de acciones para búsqueda y tratamiento de los efectos persistentes de la terapéutica, prevención de enfermedades y fomento de comportamientos sanos, sin restricción del monitoreo de la recurrencia oncológica. En el contexto nacional persisten desafíos como la escasez de políticas que orienten los cuidados de supervivencia con calidad y que sean amplios y ordinados. A pesar de ello, el enfermero ocupa posición privilegiada y es competente para implementar cuidados de supervivencia y supervisión de los efectos del tratamiento oncológico.

Family knowledge about the legal rights of children and adolescents with cancer.

OBJECTIVE: Identify the knowledge of family members of children and adolescents with cancer about their legal rights, difficulties, and concessions to ensure them. METHOD: Quantitative study, survey type, of intersectional design. A questionnaire drawn up by the researchers was applied in order to characterize the minor and their family and also to identify the family's knowledge about legal rights. Descriptive statistics were used to analyze data. RESULTS: 61 family members who participated know some more rights to the detriment of others and are especially motivated to search for information when negative impacts on the financial life increase, with repercussions beyond family health. CONCLUSION: the studied population requires more information and demands knowledge about some rights guaranteed by law. Guidance on rights empowers the family and guarantees the necessary care, searching to have an intersectoral action qualify care and assist in restructuring family dynamics to deal with chronic conditions.

How to Talk to Children and Adolescents With Cancer About Spirituality? Establishing a Conversation Model.

Talking to children and adolescents with cancer about spirituality is a challenge. This study aimed to develop and evaluate a conversation model for a spiritual approach with children and adolescents with cancer. It was a methodological study with a systematic approach in three stages: (a) review of the literature for the selection of photographs and guiding questions, (b) using an expert committee to evaluate photographs and preselected questions, and (c) cognitive interview with children and adolescents to test the methodology. The expert committee evaluated and selected 20 photos and their respective guiding questions. Fifteen children and adolescents hospitalized with cancer tested the spirituality conversation model and expressed feelings, values, beliefs, fears, and the meaning they give to life and illness. The implementation of the conversation model can contribute both to the clinical practice, facilitating care for the spiritual dimension of pediatric patients, and to qualitative research on spirituality involving children.

Sobrevivência ao câncer infantojuvenil: reflexões emergentes à enfermagem em oncologia pediátrica / Supervivencia al cáncer infantojuvenil: reflexiones emergentes a la enfermería en oncología pediátrica / Childhood cancer survival: Emerging reflections on pediatric oncology nursing

RESUMO O objetivo deste estudo é analisar e refletir criticamente sobre a sobrevivência ao câncer infantojuvenil, incluindo aspectos conceituais, repercussões, cuidados de sobrevivência e desafios. Estudo teórico e reflexivo, fundamentado na literatura científica sobre a temática e na experiência dos pesquisadores. A sobrevivência ao câncer infantojuvenil é conceituada como o processo de viver além do diagnóstico oncológico. Uma pessoa é considerada sobrevivente de câncer desde o diagnóstico até o final da vida e tem risco elevado de desenvolver efeitos físicos, psicossociais e econômicos. Portanto, cuidados de sobrevivência devem minimizar, na medida do possível, essas repercussões ao longo da vida. Esses cuidados incluem um plano de ações para rastreamento e tratamento dos efeitos persistentes da terapêutica, prevenção de doenças e promoção de comportamentos saudáveis, não se restringindo ao monitoramento da recorrência oncológica. No contexto nacional, desafios persistem, como a escassez de políticas que orientem os cuidados de sobrevivência de qualidade, abrangentes e coordenados. Apesar destes desafios, o enfermeiro ocupa posição privilegiada e é competente para implementar cuidados de sobrevivência e gerenciamento dos efeitos relacionados ao tratamento oncológico.

RESUMEN El objetivo de este estudio es analizar y reflexionar críticamente acerca de la supervivencia al cáncer infantojuvenil sobre todo en los aspectos conceptuales, repercusiones, cuidados de supervivencia y desafíos. Se trata de estudio teórico y reflexivo sobre el tema con fundamentación en la literatura científica y en la experiencia de los investigadores. La supervivencia al cáncer infantojuvenil se define como el proceso de vivir más allá del diagnóstico oncológico. A uno se le considera superviviente de cáncer desde su diagnóstico hasta el final de su vida con riesgos elevados de desarrollar efectos físicos, psicosociales y económicos. Por lo tanto, cuidados de supervivencia deben minimizar, cuando posible, esas repercusiones a lo largo de la vida. Esos cuidados incluyen un plan de acciones para búsqueda y tratamiento de los efectos persistentes de la terapéutica, prevención de enfermedades y fomento de comportamientos sanos, sin restricción del monitoreo de la recurrencia oncológica. En el contexto nacional persisten desafíos como la escasez de políticas que orienten los cuidados de supervivencia con calidad y que sean amplios y ordinados. A pesar de ello, el enfermero ocupa posición privilegiada y es competente para implementar cuidados de supervivencia y supervisión de los efectos del tratamiento oncológico.

ABSTRACT The aim of this study is to analyze and critically reflect on childhood cancer survival, including conceptual aspects, repercussions, survival care, and challenges. This is a theoretical and reflective study, based on the scientific literature on the subject and on the researchers' experience. Childhood cancer survival is conceptualized as the process of living beyond the oncological diagnosis. A person is considered a cancer survivor from the diagnosis until the end of life and is at high risk of experiencing physical, psychosocial, and economic effects. Therefore, survival care shall minimize, as far as possible, these impacts throughout life. Such care includes an action plan to track and treat the persistent effects of therapy, preventing diseases and promoting healthy behaviors, not being restricted to monitoring oncological recurrence. In the national setting, challenges persist, such as the scarcity of policies to guide comprehensive, good quality, and coordinated survival care. Despite these challenges, the nurse occupies a privileged position and is competent to implement survival care and manage the effects related to cancer treatment.

Family knowledge about the legal rights of children and adolescents with cancer / Conocimiento familiar sobre los derechos legales de niños y adolescentes con cáncer / Conhecimento familiar sobre direitos legais de crianças e adolescentes com câncer

ABSTRACT Objective: Identify the knowledge of family members of children and adolescents with cancer about their legal rights, difficulties, and concessions to ensure them. Method: Quantitative study, survey type, of intersectional design. A questionnaire drawn up by the researchers was applied in order to characterize the minor and their family and also to identify the family's knowledge about legal rights. Descriptive statistics were used to analyze data. Results: 61 family members who participated know some more rights to the detriment of others and are especially motivated to search for information when negative impacts on the financial life increase, with repercussions beyond family health. Conclusion: the studied population requires more information and demands knowledge about some rights guaranteed by law. Guidance on rights empowers the family and guarantees the necessary care, searching to have an intersectoral action qualify care and assist in restructuring family dynamics to deal with chronic conditions.

RESUMEN Objetivo: Identificar el conocimiento de familiares de niños y adolescentes con cáncer sobre sus derechos legales, dificultades y facilidades para asegurarlos. Método: Estudio cuantitativo, del tipo survey, de delineamiento interseccional. Aplicó encuesta elaborada por las investigadoras para caracterización del menor y su familia, e identificación del conocimiento del familiar sobre derechos legales. Utilizó estadística descriptiva para analizar los datos. Resultados: Participaron 61 familiares. Los familiares conocen más algunos derechos que otros, siendo especialmente motivados a buscar por informaciones cuando aumentan los impactos negativos en la vida financiera, con repercusiones para además de la salud familiar. Conclusión: La población estudiada requiere más informaciones y demanda por conocimientos sobre algunos derechos asegurados por ley. La orientación cuanto a los derechos empodera las familias y garantiza los cuidados necesarios, siendo preciso actuación intersectorial para calificar el cuidado y auxiliar en la reestructuración de la dinámica familiar para lidiar con la condición crónica.

RESUMO Objetivo: identificar o conhecimento de familiares de crianças e adolescentes com câncer sobre os seus direitos legais, dificuldades e facilidades para assegurá-los. Método: Estudo quantitativo, do tipo survey, de delineamento interseccional. Aplicou-se questionário elaborado pelas pesquisadoras para caracterização do menor e de sua família, e identificação do conhecimento do familiar sobre os direitos legais. Utilizou-se estatística descritiva para analisar os dados. Resultados: Participaram 61 familiares. Os familiares conhecem mais alguns direitos em detrimento de outros, sendo especialmente motivados a buscar por informações quando aumentam os impactos negativos na vida financeira, com repercussões para além da saúde familiar. Conclusão: a população estudada requer mais informações e demanda por conhecimentos sobre alguns direitos assegurados por lei. A orientação quanto aos direitos empodera as famílias e possibilita a garantia dos cuidados necessários, sendo preciso atuação intersetorial para qualificar o cuidado e auxiliar na reestruturação da dinâmica familiar para lidar com a condição crônica.

Family knowledge about the legal rights of children and adolescents with cancer / Conocimiento familiar sobre los derechos legales de niños y adolescentes con cáncer / Conhecimento familiar sobre direitos legais de crianças e adolescentes com câncer

ABSTRACT Objective: Identify the knowledge of family members of children and adolescents with cancer about their legal rights, difficulties, and concessions to ensure them. Method: Quantitative study, survey type, of intersectional design. A questionnaire drawn up by the researchers was applied in order to characterize the minor and their family and also to identify the family's knowledge about legal rights. Descriptive statistics were used to analyze data. Results: 61 family members who participated know some more rights to the detriment of others and are especially motivated to search for information when negative impacts on the financial life increase, with repercussions beyond family health. Conclusion: the studied population requires more information and demands knowledge about some rights guaranteed by law. Guidance on rights empowers the family and guarantees the necessary care, searching to have an intersectoral action qualify care and assist in restructuring family dynamics to deal with chronic conditions.

RESUMEN Objetivo: Identificar el conocimiento de familiares de niños y adolescentes con cáncer sobre sus derechos legales, dificultades y facilidades para asegurarlos. Método: Estudio cuantitativo, del tipo survey, de delineamiento interseccional. Aplicó encuesta elaborada por las investigadoras para caracterización del menor y su familia, e identificación del conocimiento del familiar sobre derechos legales. Utilizó estadística descriptiva para analizar los datos. Resultados: Participaron 61 familiares. Los familiares conocen más algunos derechos que otros, siendo especialmente motivados a buscar por informaciones cuando aumentan los impactos negativos en la vida financiera, con repercusiones para además de la salud familiar. Conclusión: La población estudiada requiere más informaciones y demanda por conocimientos sobre algunos derechos asegurados por ley. La orientación cuanto a los derechos empodera las familias y garantiza los cuidados necesarios, siendo preciso actuación intersectorial para calificar el cuidado y auxiliar en la reestructuración de la dinámica familiar para lidiar con la condición crónica.

RESUMO Objetivo: identificar o conhecimento de familiares de crianças e adolescentes com câncer sobre os seus direitos legais, dificuldades e facilidades para assegurá-los. Método: Estudo quantitativo, do tipo survey, de delineamento interseccional. Aplicou-se questionário elaborado pelas pesquisadoras para caracterização do menor e de sua família, e identificação do conhecimento do familiar sobre os direitos legais. Utilizou-se estatística descritiva para analisar os dados. Resultados: Participaram 61 familiares. Os familiares conhecem mais alguns direitos em detrimento de outros, sendo especialmente motivados a buscar por informações quando aumentam os impactos negativos na vida financeira, com repercussões para além da saúde familiar. Conclusão: a população estudada requer mais informações e demanda por conhecimentos sobre alguns direitos assegurados por lei. A orientação quanto aos direitos empodera as famílias e possibilita a garantia dos cuidados necessários, sendo preciso atuação intersetorial para qualificar o cuidado e auxiliar na reestruturação da dinâmica familiar para lidar com a condição crônica.

Explanatory models of families of children with type 1 diabetes mellitus.

OBJECTIVES: to analyze how children with type 1 diabetes mellitus and their families explain the pathology, based on their understanding of the factors related to the discovery of diabetes, the etiology, treatment, and prognosis of the disease. METHODS: qualitative methodological approach, based on medical anthropology and the narrative method. In-depth interviews were conducted with 12 families of children with type 1 diabetes mellitus attending follow-up consultations at a specialized center. The statements were subjected to inductive thematic analysis. RESULTS: the explanatory models identified describe the families search for the clarification of the signs and symptoms that the child had. Faced with the disease, families reorganized themselves to meet new health care needs of children, such as adequate nutrition, physical exercise, and blood glucose monitoring. Final Considerations: knowing the explanatory models allows the understanding of how families give meaning to the child's illness, favoring daily nursing care and an effective control of the disease.

The experience of health-related quality of life in extended and permanent cancer survivors: A qualitative systematic review.

OBJECTIVE: This qualitative systematic review aims to synthesize qualitative evidence from primary studies on experiencing health-related quality of life (HRQoL) in extended and permanent cancer survivors. METHODS: A systematic literature search was performed in PubMed, CINAHL, LILACS, PsycINFO, Scopus, and Web of Science. It followed guidelines from the statement in the Enhancing Transparency in Reporting the Synthesis of Qualitative Research (ENTREQ). A quality appraisal of each study was undertaken using the Critical Appraisal Skills Programme. Data synthesis was conducted according to the thematic synthesis approach. Confidence in each review finding was assessed using the Confidence in the Evidence from Reviews of Qualitative research (Grade-CERQual). RESULTS: Twenty-four studies from nine countries were selected for the final sample. Analysis of the studies' results allowed for the construction of nine descriptive themes that were interpreted into three analytical themes: "The body as a representation of HRQoL," "Living through and beyond cancer: the re-signification of HRQoL," and "Employing resources to improve HRQoL." According to the CERQual approach, moderate confidence estimations were achieved for the results. CONCLUSIONS: The themes reflect that the HRQoL experience is re-signified by survivors from the privilege of being alive. This process happens with the support of social resources, family, hope, and spirituality. Based on the findings, it is suggested that health staff should be able to recognize the impact that cancer survival has on HRQoL and develop a care plan that addresses needs to sustain health in these survivors.

The Experiences of Bereaved Parents After the Loss of a Child to Cancer: A Qualitative Metasynthesis.

This study aims to synthesize qualitative evidence about the bereavement experience of parents following the death of a child due to cancer. A qualitative metasynthesis was conducted from searching five databases. The search identified 650 articles that were independently assessed by two reviewers. Thirty-one articles were selected for full-text reading and assessed for eligibility; a total of 14 articles were included in the final sample and submitted to quality appraisal. The software NVivo® was used to organize the data and support the thematic analysis procedures. Two analytical themes were constructed: (1) losing a child and facing a rupture in identity and sense of life and (2) surviving grief and reengaging in life. The grief process was dynamic, continuous, and begun before the death of the child. Fathers and mothers reacted differently to the loss and experience of grief. The loss of a child definitively changed the parents' life and caused identity crisis and loss of life's purpose. During the process of survival, parents constructed new meanings that helped them cope with grief; they used strategies that allowed them to recover their sense of purpose in life. Synthesizing the experience of bereaved parents is essential to improve the support families of children with advanced cancer receive to better cope with their suffering and loss, before and after the child's death.