Children with disability and complex health needs: the impact on family life

Abstract

To identify consistency and differences in parental perceptions of impact, need for support and 'sense making' in children with a disability, children with a life-threatening or life-limiting illness and children who are technology dependent. A series of in-depth semi-structured interviews were undertaken with parents from 33 families that included one or more child with disabilities. The data arising from these interviews were subjected to a systematic comparative analysis based on three discrete subgroups of children: those with a disability, those with a life-limiting or life-threatening illness, and those with a technology dependence. There were major areas of consistency in parental experience of impact as related in three categories that emerged from the data: time, multiple roles and the disabled family. There are many effects of childhood disability on the family. In large part, the effects cannot simply be defined or described in the context of a particular 'medical' diagnosis or prognosis. Many elements of impact do not appear to be related to whether or not a child has a life-threatening or life-limiting illness or by whether or not a child is dependent on specific medical devices or ongoing nursing care.