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

AIM: 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.
METHOD: 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.
FINDINGS: 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.
CONCLUSION: 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.