How rehabilitation therapy research supports people across the healthcare system

Many Canadians play a central role in helping and providing care for family members or friends with a long-term condition, a physical or mental disability, or problems related to aging. In 2018, 7.8 million Canadians aged 15 and older were caregivers. That’s 25% of the Canadian population. Of these caregivers, almost 1.5 million were aged 65 and older.

When we think of those who benefit from research in rehabilitation therapy, people experiencing disability are usually front of mind. However, it is important that we also attend to the health and well-being of family caregivers, a group that often takes on critical roles in supporting health, well-being, and recovery.

Drs. Afolasade Fakolade and Nicole Bobbette are new Queen’s Health Sciences faculty members who are joining forces to investigate the well-being of family caregivers.

The partnership came together when Dr. Fakolade, a physical therapist-turned rehabilitation science researcher, and Dr. Bobbette, an occupational therapist, found a shared interest in the well-being of caregivers after respective clinical and research experiences with neurological conditions and developmental disabilities during their graduate studies at Queen’s. “We connected through a passion and desire to support not only the health and well-being of people living with disabilities, but their caregivers as well. We recognized the often essential roles that caregivers take on and the risk of overlooking one’s own health in lieu of caring for another” says Dr. Bobbette.

The potential scope of their research is far-reaching. “At one point or another in our lives, we all find ourselves either in the position of needing or providing care” says Dr. Bobbette. “That’s why it’s so important that we understand the needs and challenges of caregivers from different backgrounds and co-develop interventions and resources with them to support their health and well-being.”

The role of the caregiver bridges many gaps in the Canadian healthcare system. Though access to professional healthcare providers remains paramount, much of the recovery and care processes for those experiencing disability are managed on the home front, and most commonly by family members. “In many ways, caregivers reduce the strains on the healthcare system that are associated with recovery and chronic health conditions. But often out of their own pockets, and to their physical and emotional detriment” says Dr. Fakolade.

Drs. Bobbette and Fakolade are now preparing to conduct a series of focus groups and a Canada-wide survey involving caregivers, health care providers, and representatives of organizations that offer support to caregivers in order to discern the most pressing needs of this population. “We want to learn from caregivers firsthand and receive direction on the kinds of well-being supports and resources that are needed,” says Dr. Bobbette.

Research that helps practitioners, service providers, and policy makers better understand the needs of caregivers has the potential to lead to better services and policy changes that would support this critical and underrecognized group of people. Not only does addressing these issues help individual caregivers feel seen, heard, and valued, but it in turn promotes their health and wellbeing, and has implications for care-recipients and society. “When you have access to a family caregiver, it significantly improves your quality of life. Moreover, when you have access to a caregiver who is receiving the support they need to function healthily and perform their caregiving role successfully, care recipients experience incredible improvements in all aspects of their lives. That’s what we’re working towards” says Dr. Fakolade.

Though the team is still in the preliminary stages of their investigation, they have an ultimate goal of establishing a Caregiver Research Collaborative (CARE-CO) at the School of Rehabilitation Therapy that would work with caregivers in partnership to focus on the development, implementation and evaluation of resources for caregivers along the lifespan. This is a lofty goal, but one Drs. Bobbette and Fakolade are ready to take on.

“We are really grateful to the School of Rehabilitation Therapy and Queen’s Health Sciences for supporting our research and allowing us to collaborate despite our different specializations” says Dr. Fakolade. “Interdisciplinary research is so valuable. This is the beginning of an exciting and dynamic collaboration.”