A possibility for strengthening family life and health: Family members’ lived experience when a sick child receives home care in Sweden

Background: 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. Methods: 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. Results: 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. Conclusions: 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.