The study aims to describe the experiences of a hospital-based home care programme in the families of children with cancer. Fourteen parents, representing 10 families, were interviewed about their experiences of a hospital-based home care programme during a 4-month period in 2009 at a university hospital in Denmark. Five children participated in all or part of the interview. The interviews were transcribed verbatim and analysed using qualitative content analysis. The findings indicate that hospital-based home care enabled the families to remain intact throughout the course of treatment, as it decreased the strain on the family and the ill child, maintained normality and an ordinary everyday life and fulfilled the need for safety and security. According to family members of children with cancer, hospital-based home care support enhanced their quality of life during the child's cancer trajectory. Our study highlights the importance of providing hospital-based home care with consideration for the family members' need for the sense of security achieved by home care by experienced paediatric oncology nurses and regular contact with the doctor. In future studies, interviews with children and siblings could be an important source of information for planning and delivering care suited to the families' perceived needs.
Aims and objectives: To explore healthcare professionals' conceptions of caring for sick children in home care services.Background: Families often prefer home care to hospital care, and the number of
Families often prefer home care to hospital care, and home-care services for ill children are increasing worldwide with limited knowledge of families' needs during curative and palliative home care. The aim of this study was to elucidate family members' lived experience when a sick child received home care from county-based primary healthcare services. A descriptive qualitative design was chosen and 12 families including sick children receiving home care and their mothers, fathers and siblings in the south of Sweden were interviewed between December 2015 and January 2017. The transcribed interviews were analysed using a hermeneutic phenomenological approach. The family members' lived experience was described in three essential themes:"Strengthening family life" relates to how home care induced freedom and luxury in a strained period of life and supported the families' everyday life. Usual social activities and relations were maintained as time and energy was saved when receiving home care. "Promoting health" relates to how the family members' burden of illness decreased as the child's signs of illness alleviated and the well-being of the whole family increased when the child received care in the home. This provided a peaceful respite for family members' psychosocial recovery. The third theme, "Creating alliances," relates to the importance of creating trustful alliances for communicating participation in care. If trustful alliances were not created, parents felt an overwhelming responsibility and family members became anxious. The findings suggest that care in the family's home is a useful complement to hospital care. Home care should be given with close attention to family members' needs and conditions, as positive effects of home care might be jeopardised when expectations and possibilities are not successfully shared.
K E Y W O R D Schild, family members' lived experience, hermeneutic phenomenology, home-care services, paediatric careThis is an open access article under the terms of the Creative Commons Attribution-NonCommercial License, which permits use, distribution and reproduction in any medium, provided the original work is properly cited and is not used for commercial purposes.
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