Optimizing Virtual Health to Empower Caregivers: Setting an intersectional research agenda

Health Research BC is providing matching funds for this project, which is funded by the Canadian Institutes of Health Research’s Winter 2023 ICS Planning and Dissemination Grant – Supporting & Strengthening the Health Workforce stream.

This project builds from relationships in BC to develop a national network of virtual healthcare and caregiving researchers, practitioners, and decisionmakers to explore opportunities for collaboration. The project is led by Dr. Julia Smith, Assistant Professor in the Faculty of Health Sciences at Simon Fraser and lead for Health and Social Inequities team at the Pacific Institute on Pathogens, Pandemics and Society. Co-principal investigators include Lindsay Hedden, an Assistant Professor in FHS at SFU and Scientific Director of the BC SUPPORT Unit, and Andrew Sixsmith, a Professor in Gerontology and Director of the Science, Technology and Research (STAR) Institute at SFU. The team includes three trainees: Becky White (PhD student, Gerontology), Alice Murage (PhD Student, FHS) and Simran Purewal (MSc Student, FHS). Megan MacPherson the Regional Lead, Research and Knowledge Translation, Virtual Health at the Fraser Health Authority joins the team as a knowledge user.

In Canada, over 75% of healthcare is provided by unpaid, informal caregivers. Despite the essential role of caregivers, they are rarely recognized as part of the health workforce and receive little support. Caregiving is structured by racial and gender norms, as well as economic inequities, as the majority of caregivers are women, many of them racialized and low income. Caregivers’ responsibilities directly impact their social determinants of health, forcing them to give up paid work, education, and community engagement opportunities, while contributing to increased isolation and stress. The increasing use of virtual care can have both positive and negative effects on caregivers.

The goal of this project is to develop a research agenda focused on identifying structural inequities experienced by caregivers and virtual care service delivery solutions that empower caregivers to provide quality care while supporting their own well-being and reducing social, economic and health costs.
Research activities in BC include individual stakeholder consultations, an environmental scan and a workshop. Outputs from the above activities will be brought together to co-develop a participatory research agenda around developing virtual care solutions that empower caregivers.

End of Award Update – June 2024

Results

Results from our research indicate that little virtual health research or policy considers the unique role of family/friend caregivers in virtual health delivery – despite the fact 75% of healthcare in Canada is provided unpaid by family and friends. We found virtual health delivery can be empowering for caregivers, in terms of reducing time burdens and costs to care, but also creates challenges, as caregivers take on new roles around monitoring and communication. Concerns were raised about privacy and confidentiality, as well as access to virtual health from those who do not speak English as a first language. Both primary and secondary research confirmed that type of healthcare (for example monitoring versus complex diagnosis) and patient demographics (for example, adults versus children) greatly influenced the perceived benefits of virtual health.

These findings reflect those of our literature review (currently under review) and are summarized in our environmental scan here – https://pipps.cdn.prismic.io/pipps/Zj5UvUFLKBtrWyT7_VirtualHealthEnvironmentalScanMay2024.pdf

Impact

Our results have been shared directly, through consultations and lunch-and-learns with over 50 caregivers, clinicians, researchers’ and decision-makers in British Columbia. Through these discussions, as well as our outputs, we aim to inform the development of interventions that recognize and support the essential role of caregivers in virtual health delivery, which in turn will have positive impacts on health service delivery and patient wellbeing.

We have also shared our findings nationally and globally through academic papers and public facing outputs, such as in the Conversation (forthcoming).

Potential Influence

With this funding we have started a conversation about the essential role of caregivers in virtual health delivery. We will continue these conversations with our partners and decision-makers, drawing on the evidence generated through this project. While we aim to inform health care delivery in British Columbia, our publications share learnings relevant to the many other contexts which have also seen a rapid scale up of virtual health.

Next Steps

We have submitted one article (a literature review) to SSM- Health Systems and are currently drafting another (based on the consultations). We have an article about to be published in the Conversation as well as an environmental scan report (https://pipps.cdn.prismic.io/pipps/Zj5UvUFLKBtrWyT7_VirtualHealthEnvironmentalScanMay2024.pdf)

One of the students employed through this project will be sharing results at the Global Conference on Aging and Gerontology (https://www.agconf.org/) in August.

We have also applied for a CIHR Project Grant to continue this research.