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

Abstract

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.

Healthcare costs and productivity losses associated with county‐based home‐care service for sick children in Sweden

“…Therefore, if HCS in fact leads to a reduction of parental work absenteeism, the choice of HCS may contribute to optimising family health capital in a lifetime perspective. The possibility of increased school attendance for sick children and increased sibling participation in family life, reported both in the present study and in previous studies (7,36), contributes further to families' production of their own health capital (35).…”

“…We found a trend towards decreased absenteeism during the follow‐up period also when the child continued to be ill. The present study does not demonstrate whether or not this is due to HCS, but it is in line with parents’ lived experience 7 of increased possibility of attending work, while a child is receiving HCS. Two Swedish reports 31,32 support research findings 33,34 in that there are long‐lasting associations between parental periods of work absenteeism due to care for a sick child and lower pay.…”

“…A population‐based healthcare service, such as county‐based HCS for children in the present study, rather than condition‐specific service, might help optimise accessibility 29 as it allows generous accessibility of support even when the number of children was low 3. Easy and extensive access to HCS further offers comfort and relief for families in strained periods of life 7,30.…”

“…Background Home-care service (HCS), described as a healthcare service in the ill child's home and provided by healthcare professionals as a complement to and/or substitute for hospital care, is offered for a variety of acute, long-term and chronic illnesses (1)(2)(3)(4) and for end-of-life care (3)(4)(5). Families often prefer care at home to hospital-based care only (3,4,(6)(7)(8). It can strengthen (7) and normalise everyday family life (9,10) without negative impact on family economy such as the family's disposable income (11)(12)(13) or out-of-pocket expenses, for example, for travelling (10,14).…”

“…Families often prefer care at home to hospital-based care only (3,4,(6)(7)(8). It can strengthen (7) and normalise everyday family life (9,10) without negative impact on family economy such as the family's disposable income (11)(12)(13) or out-of-pocket expenses, for example, for travelling (10,14). Systematic reviews indicate that HCS can offer care with medical safety equal to hospital care (2,4).…”