The prevalence of children living with chronic health conditions is increasing worldwide and can disrupt family roles, relationships, function, and parental involvement in family caregiving. The purpose of this systematic review was to explore fathers’ experiences and involvement in caring for a child with a chronic condition. Systematic searches using seven databases were conducted. Study criteria included (1) peer-reviewed original research in English, Spanish, French, or Portuguese, (2) children less than 19 years of age with a chronic condition, (3) fathers (biological or guardian) as direct informants, and (4) outcomes addressing fathers’ experience, perceptions, and/or involvement in the child’s care. Data were synthesized from ten articles reflecting eight separate studies that utilized quantitative designs. Three areas of focus were identified: Family Functioning, Father’s Psychological Health, and Need for Support. Data suggested increased involvement from the father in caring for their child with a chronic condition was associated with improved family functioning, increased anxiety and distress, decreased self-esteem, and increased need for support. This review revealed a paucity of data regarding fathers’ experiences and involvement when caring for a child with a chronic condition, with that available primarily from developed countries. Rigorous empirical studies are needed to deepen understanding of how fathers are involved in the care of their child with a chronic condition.

Objective: To describe the chemotherapy-associated symptoms and the strategies used for their management from the perspective of pediatric cancer patients’ family caregivers. Methods: This is a descriptive study with qualitative data analysis. Data collection took place in a pediatric hospital, from December 2017 to December 2018, with family caregivers of pediatric patients undergoing chemotherapy. Semi-structured interviews, subjected to inductive content analysis, were carried out. Concepts from the Symptom Management Theory were used to discuss the results. Results: Eighteen family caregivers participated. The participants mentioned: physical symptoms, especially weakness, alopecia, low immunity, pain, mucositis, constipation, nausea, and vomiting; emotional or psychosocial symptoms such as sadness and mood changes; and constitutional symptoms such as loss of appetite and fever. Pharmacological and non-pharmacological measures were mentioned in the management of symptoms and adverse effects. Conclusion: Participants demonstrated skills to identify and manage symptoms of chemotherapy. Knowing the experience of these families can help nurses in planning care and interventions to minimize these events.

Qualidade de vida da população infantojuvenil oncológica com e sem fadigaQuality of life of cancer children-adolescents with and without fatigue Calidad de vida de la población infantojuvenil oncológica con y sin fatiga

Objectives: To develop and validate an educational video for family members of children with leukemia using a semi-implantable catheter. Method: Methodological research, carried out from 2018 to 2020 in six stages: search for themes through interviews with family members of children with leukemia using a semi-implantable catheter at the Institute of Pediatrics of Rio de Janeiro; theoretical study; video development; online validation with expert judges; adequacy of the video and validation with family members. Interviews analyzed with Iramuteq software and validation with Likert scale considering validated items with a concordance index of 90%. Results: The themes hand hygiene, dressing and catheter fixation; bath care and catheter complications were addressed in an animated video created and validated with a concordance index of 97% among judges and 100% by family members. Conclusion: The study valued the participation of family members in all conception of the video and created a validated educational technology of far reaching and easy to use.

RESUMO Objetivo: Descrever e comparar os sinais fisiológicos apresentados pelos prematuros na pesagem tradicional e humanizada. Método: Estudo quase-experimental crossover, com amostra de 30 prematuros randomicamente assinalados e alocados no grupo controle (tradicional) e no grupo intervenção (humanizada),no período de março de 2019 a março de 2020, com a coleta de dados gerais, sinais vitais antes e depois dos procedimentos. As análises estatísticas incluíram descrição de frequências relativas e absolutas, medida de tendência central e de dispersão. Resultados: Os prematuros apresentaram menos aumento na frequência cardíaca (53,3%) e respiratória (43%) na verificação da pesagem humanizada do que na tradicional, com 83,3% dos neonatos e 80%,respectivamente. Conclusão: Observou-se que a forma humanizada proporcionou menos instabilidade fisiológica, principalmente nas frequências cardíaca e respiratória, tornando-se necessário estimular discussões sobre a humanização da assistência e realizar essa prática de forma rotineira nas unidades de saúde.