Quality of life and family management of paediatric chronic condition amidst the COVID-19 pandemic.

PURPOSE: This study aimed to describe the perception of parents of children/adolescents with chronic conditions of their quality of life and family functioning during the COVID-19 pandemic and explore how the COVID-19 pandemic affected family management of children/adolescents' chronic conditions. DESIGN AND METHODS: A total of 237 parents of children/adolescents with chronic conditions participated in this cross-sectional study. Data were collected through an online questionnaire using the Paediatric Quality of Life Inventory™ Family Impact Module and an open-ended question about the impact of the pandemic on the family management of the paediatric chronic condition. RESULTS: The Total Score of PedsQL™ FIM was slightly higher than the midpoint of the scale (M = 60.27; SD = 19.04), and the impact of the pandemic on the family's management of the chronic condition was perceived by 30% of parents as high or moderate. Statistically significant differences were found between parents who reported a high or moderate impact of the pandemic and those reporting little or no impact of the pandemic regarding parental quality of life and family functioning (t (233) = 8.13, p = .00, Cohen's d = 1.14). Two themes emerged from the analysis of the open-ended question: Impact on the child/adolescent and Impact on the family. CONCLUSIONS: Parents of children/adolescents with chronic conditions reported an average quality of life, and the COVID-19 pandemic significantly impacted the family management of chronic conditions. PRACTICE IMPLICATIONS: These results highlight the importance of developing interventions to support families in complex situations and contexts, targeting family functioning, family quality of life, and emotional management.

Processos de confronto dos enfermeiros face à morte inesperada de crianças e adolescentes / Nurses' coping with the unexpected death of children and adolescents

Objetivo: compreender as estratégias de confronto utilizadas pelos enfermeiros para lidar com a morte inesperada em pediatria. Métodos: pesquisa qualitativa com seis profissionais de enfermagem que trabalham em serviços de urgência e cuidados intensivos pediátricos. Procedeu-se a analise de conteúdo. Resultados: dos dados emergiram dois grupos: Estratégias centradas na avaliação da situação em que os profissionais tentam, através de processos racionais, compreender e aceitar a morte inesperada; estratégias centradas na gestão emocional, em que é reconhecido o sofrimento resultante do confronto com a morte inesperada, procurando estratégias de melhor gestão desse confronto. Conclusão: os profissionais sofrem e procuram mecanismos de confronto para gerir o processo de luto com a morte inesperada de criança/adolescente.