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

Abstract

Purpose: This 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 methods: This 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.

Results: From 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.

Conclusion: Our 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.