Support requirements of parents caring for a child with disability and complex health needs

AIM: To investigate the experiences of parents of children with complex health needs in relation to the help and support they receive when caring for their child. METHOD: A series of in-depth semi-structured interviews undertaken with the parents of 34 children (33 families) with a disability or a complex health need. Families were categorised into one of three subgroups: children with a disability, children with a life-limiting or life-threatening illness, or children with technology dependence. FINDINGS: In relation to parental experience of the need for help and support, two major categories were identified, namely 'people', and 'processes and resources', as well as a series of subcategories. Respite care was identified as the greatest unmet need. CONCLUSION: Parents identified a range of helping behaviours among key professional staff involved in support provision. The greatest area of unmet needs is for respite care.