The impact of caregiving for physically disabled children who use wheelchairs on their caregivers’ occupational performance, health and satisfaction.

Background
Recommendations from the “Proposals for the Reform of the Northern Ireland Wheelchair Service” (DHSSPS 2008) identified the need to respond to the individual needs of each service user, including their physical and lifestyle needs to ensure maximum independence, social inclusion and quality of life. These recommendations did not however, recognise that for many clinicians working in children’s services there can often be a fine balance between child/client-centred and family-centred practice. These children who depend upon a wheelchair for all their mobility are dependent upon support and facilitation by their parent caregivers. These caregivers can often find that their lives evolve around providing for the needs of these children. There are over 25,500 people in Northern Ireland who are wheelchair users who have been provided with a wheelchair via the National Health Service (Regional Disablement Services, Northern Ireland Statistics and Research Agency, 2011). Of this population there are 2562 NHS service users who are children i.e. under the age of eighteen. The role of caregiving can be stressful and has been found to negatively influence the health and wellbeing of caregivers (Bourke-Taylor et al 2010; Raina et al 2005; Quittner et al 1992; Breslau 1983). Some researchers have found that caregiving for children with complex needs can create both emotional and physical demands upon the parent caregiver (Ryan et al 2007). In particular, caregiving for children who have cerebral palsy (Button et al 2001), Down’s Syndrome (Byrne & Cunningham 1988), or autistic spectrum disorders (Tobing & Glenwick 2002) can result in greater levels of stress for these parents than for parents whose child does not have a disability. 5 However, little is known regarding the impact on the health, wellbeing and occupation of parent caregivers of physically disabled children who use wheelchairs. Indeed it has been hypothesised that the provision of assistive technology such as a wheelchair should reduce the stress and burden upon parent caregivers (Ryan et al 2007).