Positive and negative experiences of caregivers helping power wheelchair users: a mixed-method study

PurposeThis study aimed to better understand how the powered wheelchair (PWC) impacts the experiences of family caregivers of PWC users, and explore the strategies and resources used by caregivers to cope with their role.Materials and MethodsThis mixed-methods study was part of a larger cross-sectional research study conducted in four Canadian cities. Twenty-three family caregivers of PWC users, who provided at least 2 h of support per week, completed the Power Mobility Caregiver Assistive Technology Outcome (PM-CATOM), an 18-item measure assessing PWC-related and overall burden experienced by family caregivers. We also conducted semi-structured interviews and analysed them using inductive content analysis.ResultsFrom the quantitative PM-CATOM results, the caregivers perceived low level of burden for the wheelchair-related items, (Median:4.5; Range 3 to 5). Most perceived burden when physically helping the wheelchair user and when providing verbal hints. In terms of overall help, the caregivers experienced some level of burden (Median 3.5: Range 3 to 5). Most caregivers identified burden associated with the limitation to their recreational and/or leisure activities (52.2%) and feeling that they have more to do than they can handle. We identified 3 themes in the interviews: the burden experiences of caring for PWC users, the positive experiences of caregiving, and the coping strategies and resources used by caregivers of PWC users.ConclusionOur study showed that understanding the experiences of caregivers of AT users is central as they are directly and indirectly impacted by the PWC in their lives and caregiving roles. The caregivers experienced some burden related to wheelchair-related help, especially around the driving of the powered wheelchair (PWC).However, the PWC provide independence not only to the user but also to the family caregivers, allowing them to share quality time and helping each otherThe PWC impact the interaction with the social and physical environment of the caregivers.Caregiver-oriented interventions should build on the strengths of the caregivers and contribute to their well-being.