Publication
Parents' Experiences of Family-Centred Care in Home-Based Paediatric Care of Their Child With Life-Limiting Illness: A Qualitative Descriptive Study
Sari K, Tarja P, Minna H, Outi K · Journal of advanced nursing · 2025
Aim: To describe parents' experiences of family-centred care in home-based paediatric care of their child with a life-limiting illness. Design: A qualitative descriptive study with semi-structured interviews. Methods: The purposive sample of parents (n = 11) of children diagnosed with life-limiting illnesses and receiving home-based paediatric care was recruited from a university hospital in Finland. The semi-structured interviews were conducted between December 2020 and December 2021. The data were analysed using deductive-inductive content analysis. Results: Under the five themes of family-centred care, 11 main categories and 31 subcategories were identified. The main categories were (1) uniqueness of all family members as care recipients, (2) incorporating family's background into care, (3) emotional support, (4) practical support, (5) information sharing, (6) negotiation, (7) parental involvement in care, (8) home care by parents, (9) collaboration with the hospital, (10) collaboration with local authorities and (11) collaboration with the home care team. Conclusion: Individually tailored interventions and carefully integrated services based on the needs of parents and all family members best support families in challenging life situations and contribute to the implementation of family-centred care in the home-based care of children with life-limiting illnesses. Implications for the profession and patient care: The results increase the understanding of parents' experiences, wishes and needs to support further development of a home-based paediatric care model for children with life-limiting illnesses. Impact: The results impact individual families caring for seriously ill children at home, professionals delivering the care and healthcare authorities and policymakers designing the services. Reporting method: The reporting of the study is based on the Consolidated Criteria for Reporting Qualitative Research (COREQ). Patient and public contribution: No patient or public contribution.
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