About the Project
Most people want the choice to “age in place” at home and in their communities, and home care is key to supporting this choice. A growing alternative to government-organized home care is “directly-funded” (DF) or self-managed home care, which provides individuals with cash to arrange their own home care services. Using feminist and disability studies care frameworks, this project involved a metasynthesis of international research, a national environmental scan of existing programs, a survey of 95 workers, and 47 lived experience interviews with clients, caregivers, and workers. This project asked a variety of questions including: What are the features of DF programs across Canada? What are the emerging issues related to program design and policy development? Who are the workers in DF home care, and what are the working conditions? How does DF home care support and/or place demands upon family caregivers? Does DF have theoretical implications for social movements among older and disabled people in need of home-based support?
What We Learned
- Policy Issues
DF care programs are growing across Canada particularly among older clients and their families. Our environmental scan describes 20 programs as of the time of data collection, highlighting policy features across the country. The programs serve diverse clientele, including younger adults with physical disabilities and older people, some of whom are living with cognitive impairments. We found there is a lack of information on the workers employed through these program and that third party agencies are playing a growing role in service delivery.
- Client and family experiences
In our case study of Manitoba, we found DF enhances choice and flexibility of home care services, particularly in terms of what gets done and when it gets done, leading to greater satisfaction and a sense of improved care quality among both clients and caregivers. DF can also reduce caregiver burden, although there are areas where caregiver support still needs improvement.
- Worker experiences
Our Manitoba case study found workers in DF are frequently involved in the work of keeping households running and supporting social and community interactions. Workers are also occasionally, and uniquely, involved in helping with the administration of DF home care services and finding new workers. We refer to this increased emphasis on work that is not related to body care as ‘social task shifting.’ At the same time, relationships with clients can become extremely complex, which some experience as exploitation. For many, however, work in DF results in rewarding and meaningful personal relationships.
We conducted an environmental scan and identified 20 DF programs across Canada. Standardized information was collected for each program through the environmental scan, and key information questionnaires and interviews. The information and analysis is provided in our National Report on Directly-Funded Care Programs in Canada.
Research Team Members
Christine Kelly, University of Manitoba
Katie Aubrecht, St. Francis Xavier University
Ivy Lynn Bourgeault, University of Ottawa
Amanda Grenier, University of Toronto
Mary-Jean Hande, Mount Saint Vincent University
Anne Martin-Matthews, University of British Columbia
Allison Williams, McMaster University
Yuns Oh, PhD
Research Assistants and Students:
Hiwot Amare, Kevin Balkaran, Lisette Dansereau, Aliya Jamal, Maggie FitzGerald, Elizabeth Tingey, Zena van de Poel
This research was supported by the Canadian Institutes of Health Research, project grant number 148856