Young children with cerebral palsy: families self-reported equipment needs and out-of-pocket expenditure

Abstract

Background: Costs to families raising a child with cerebral palsy and complex needs are direct and indirect. This study investigated the self-reported real-life costs, equipment needs, and associated characteristics of children who had the highest equipment and care needs.

Method: The purposive sample (n = 29) were families with a child with cerebral palsy: gross motor function levels 5 (n = 20), level 4 (n = 5), level 3 (n = 4); complex communication needs (n = 21); medical needs (n = 14); hearing impairment (n = 5) and visual impairment (n = 9). Participants completed a specifically designed survey that included the Assistance to Participate Scale. Equipment and technology purchases were recorded in the areas of positioning, mobility, transport, home modifications, communication, splinting and orthoses, self-care, technology, communication devices, medical, adapted toys/leisure items and privately hired babysitters/carers. Descriptive and inferential statistics were used to analyse the data.

Results: Families had purchased up to 25 items within the areas described. The highest median number of items were recorded for positioning (15 items), mobility devices (9 items) and adapted toys/leisure items (9 items). Median costs were highest for home modifications (AUD$23000), transport (AUD$15000), splints and orthoses (AUD$3145), paid carers (AUD$3080), equipment for toileting/dressing/bathing (AUD$2900) and technical/medical items ($2380). Children who needed more parental assistance to participate in play and recreation also required significantly more equipment overall for positioning, communication, self-care and toys/leisure.

Conclusions: The equipment needs of young children with complex disability are extensive and out-of-pocket expenses and parental time to support participation in play/recreation excessive. Substantial financial support to offset costs are crucial to better support families in this life situation.

Keywords: cerebral palsy; complex needs; family support; parents; physical disabilities; socio-economic status.