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

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.

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.

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.

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.