Twelve principles to support caregiver engagement in health care systems and health research

Kerry Kuluski, Lunenfeld-Tanenbaum Research Institute, Sinai Health System & University of Toronto, OntarioFollow
Kristina M. Kokorelias, University of Toronto, OntarioFollow
Allie Peckham, University of Toronto, OntarioFollow
Jodeme Goldhar, The Change Foundation, OntarioFollow
John Petrie, Trillium Health Partners Oncology Patient and Family Advisory Council, OntarioFollow
Carole Anne Alloway, Family Caregivers Voice, OntarioFollow

Abstract

Family and friend caregivers (i.e., unpaid carers) play a critical role in meeting the needs of people across various ages and illness circumstances. Caregiver experiences and expertise, which are currently overlooked, should be considered in practice (such as designing and evaluating services) and when designing and conducting research. In order to improve the quality of health care we need to understand how best to meaningfully engage caregivers in research, policy and program development to fill this important gap. Our study aimed to determine principles to support caregiver engagement in practice and research. A pan Canadian meeting brought together 48 stakeholders from research, policy and practice and lived experience (caregivers) to share perspectives on caregiver engagement and co-design. Several presentations from each stakeholder group were shared, followed by discussion and report back sessions. Extensive notes were taken and members of the research team synthesized the findings into categories and presented them back to participants for verification. 12 core principles to support caregiver engagement in practice and research were identified and validated by attendees: use policy levers and incentives, make blunt structural changes, face fears, recognize caregivers and increase opportunities to engage, define what quality means, be mindful of whose experience is being represented, address language and power, engage early, clarify roles and expectations, listen and act on what you hear, measure, and create a community of learning. These principles provide a foundation to guide curriculum development, core competency training, future research and quality improvement activities in health care settings.

Recommended Citation

Kuluski K, Kokorelias KM, Peckham A, Goldhar J, Petrie J, Alloway C. Twelve principles to support caregiver engagement in health care systems and health research. Patient Experience Journal. 2019; 6(1):141-148. doi: 10.35680/2372-0247.1338.