Abstract

This paper discusses the experiences of parents whose children have complex and continuing health needs in relation to receiving assistance to enable their child to live at home. It focuses on the provision of support in the family home and the challenges as well as benefits that this can present. The findings are taken from a qualitative study of parents’ experiences of having a child who has complex and continuing health needs. While it is a relatively small study, it contributes to an increasing body of evidence that should inform the delivery of support for children and their families. The principal findings of the study are: that despite their necessity, having staff in the family home can constitute a significant intrusion on the lives and privacy of individuals and families; the level of involvement which individuals and families prefer to have with staff varies; having staff in the family home can change the experience of parenting; and that although the provision of staff is intended to assist families, staff can of themselves increase families’ workload. These findings suggest that staff who are involved in supporting children with complex and continuing health needs and their families need to be able to work flexibly, respecting their clients’ choices regarding their home, relationships, child-care practices, and their time. They need to explore how the support provided can maximize quality of life for the child and family while minimizing intrusion.