https://orcid.org/0000-0002-3730-4310
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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.
IMPLICATIONS FOR REHABILITATION
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 other
The 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.
Acknowledgements
We thank Josiane Lettre and Mathieu Andrieux for the study coordination and support in the analysis. We also want to thank the participants who agreed to share their experiences of caregiving with us.
Disclosure statement
The authors report no conflicts of interest.
Data availability statement
The data are available upon request.
Additional information
Funding
Notes on contributors
Delphine Labbé
Delphine Labbé research focuses on promoting full participation and health of people living with disabilities by optimizing their interaction with the social and physical environment. Her community-based research focuses on 3 main area 1) The lived experience of people with disabilities within their built and social urban environment, with a focus on pedestrian and active transportation; 2) Health promotion through recreational and physical activities for people with disabilities of all ages; and 3) the experience with assistive technologies of users and caregivers as a health determinants. Grounded in the social model of disability and the ecosystemic approach, she is using various qualitative and mixed methods approaches such as interviews, focus groups, photovoice, Q-methodology, world Cafés, and surveys. She has also expertise in Knowledge Translation (KT) and is deeply committed to co-construct knowledge with people with disabilities and with relevant stakeholders (e.g. urban planners, health care professionals) to produce policy and social changes.
Daryl G. Yao
Daryl G. Yao is a PhD candidate in the Department of Disability and Human Development at the University of Illinois at Chicago (USA) under the supervision of Dr. Delphine Labbé. He also holds an MS in Occupational Therapy from Tokyo Metropolitan University (Japan), awarded in 2021. His research focuses on 1) the examination of policies and their influence on people with disabilities; 2) the promotion of contemporary ways of occupational therapy service delivery; and 3) the examination of assistive technology use. These endeavors are grounded in the social model of disability and are geared toward the attainment of rights and justice among people with disabilities.
William C. Miller
William C. Miller, PhD epidemiology, is a Professor in the Department of Occupational Science and Occupational Therapy at UBC. He is an investigator with the International Collaboration on Repair Discoveries and AGEWELL a pan-Canadian Network that strives to create real-world assistive technology solutions that have a meaningful impact on seniors, their caregivers and individuals with physical disability in general. His research focuses on the epidemiology, measurement, and evaluation of interventions and technologies designed to remediate mobility disability with the goal of improving social participation. Bill is a fellow of the Canadian Association of Occupational Therapists and the Canadian Institutes of Health Research. He has published 265 journal papers and 12 book chapters. He has developed 6 outcome tools designed for clinical practice and research some translated into multiple languages.
François Routhier
François Routhier is a Full professor at Université Laval and he is Senior Research Scholar of the Quebec Health Research Funds. Dr. Routhier’s research is focused on assistive technologies development and assessment of their impact on social participation of individuals living with disabilities. Over the past 25 years, he has devoted a large part of his research program to improving the mobility of wheelchair users by offering various forms of in-person, peer and virtual training.
Paula W. Rushton
Paula W. Rushton is an Associate Professor and Director of the School of Occupational Therapy at Dalhousie University. Dr. Rushton’s research is focused on measurement, intervention, knowledge translation and education related to improving the wheeled mobility of both adults and children through an improved wheelchair provision process. From the measurement, intervention and knowledge translation perspective, Rushton’s projects lie in the domains of wheelchair skills and wheelchair confidence. From the education perspective, she collaborates with the International Society of Wheelchair Professionals to enhance wheelchair content in rehabilitation university curricula globally.
Louise Demers
Louise Demers is Professor at the School of Rehabilitation of the Faculty of Medicine at Université de Montréal. Her research has been funded by several agencies, including the CIHR, the FRQ-S, and the US National Institute on Disability and Rehabilitation, which led to over 130 peer-reviewed articles. Louise Demers was a founding member of the international Consortium for Assistive Technology Outcome Research and contributed to advancing the field of assistive technology outcomes measurement with improved instruments and techniques available to researchers, service providers, and policymakers. She was part of the CANWHEEL team, a group of scientists working for the advancement of power wheelchair mobility for older adults. She was also workpackage leader of the Canada’s technology and aging network AGEWELL Network Centers of Excellence, contributing to the substantive research on technologies and services that help aging populations and their family caregivers. Louise Demers is currently Director and Associate Vice-Principal of Graduate and Postdoctoral Studies, where she is responsible for the financial support and professional development of master and doctoral students, while nurturing a strong interest in addressing equity, diversity, and inclusion in university functioning.
W. Ben Mortenson
W. Ben Mortenson has been an occupational therapist since 1991. He is Professor and Head of the Department of Occupational Science and Occupational Therapy at the University of British Columbia. He held a New Investigator Award from the Canadian Institutes of Health Research (2016-2021). He is a principal investigator at the GF Strong Rehabilitation Research Program and International Collaboration on Repair Discoveries. He is an experienced mixed-methods researcher with over 190 peer-reviewed publications and he has over $7M in funding as a principal investigator or co-P I and almost $50M as co-investigator. He has had over 300, peer reviewed abstracts accepted at national and international conferences. He has provided research supervision to over 130 trainees. His work is centered on four main populations: assistive technology users, informal and formal caregivers, individuals with spinal cord injury, and residents in long-term care. His research focuses on four overlapping areas: assistive technology, social participation, caregiving and outcome measurement. He was the 2021 recipient of the Award for Innovative Practice from the Canadian Association of Occupational Therapy (CAOT). In 2022 he was inducted as a CAOT Fellow.