Putting it into Practice

Title: Twelve principles to support caregiver engagement in health care systems and health research.
Author: Kuluski, Kerry; Kokorelias, Kristina M.; Peckham, Allie; Goldhar, Jodeme; Petrie, John; and Alloway, Carole Anne.
Date Published: 2019
Reference: Patient Experience Journal, 6(1): 17.
Are service users or carers authors: Yes

Abstract: Family and friend caregivers (unpaid carers) play a critical role in meeting the needs of people of different ages with different health conditions. Caregivers’ experiences and expertise should be considered when designing and evaluating services, and when designing and conducting research. We need to understand how best to meaningfully involve caregivers to fill this important gap. This study aimed to identify principles to support caregiver involvement in services and research. A meeting in Canada 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. 12 core principles to support caregiver engagement in practice and research were identified and confirmed by people at the meeting. These were: use policy levers and incentives, make blunt structural changes, face fears, recognise 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 training and development of caregiver involvement to support future research and improve healthcare services.

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Categories: journal article
service users and carers
general principles of good practice
General guidance on involving the public in research

Date Entered: 2019/05/21

Date Edited: 2019/05/21

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