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

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...

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Autores principales:	Kerry Kuluski, Kristina Kokorelias, Allie Peckham, Jodeme Goldhar, John Petrie, Carole Anne Alloway
Formato:	article
Lenguaje:	EN
Publicado:	The Beryl Institute 2019
Materias:	caregivers carers engagement co-design health services quality improvement health care Medicine (General) R5-920 Public aspects of medicine RA1-1270
Acceso en línea:	https://doaj.org/article/2261b00555f34834ba53d4df7f63fdf8
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spelling	oai:doaj.org-article:2261b00555f34834ba53d4df7f63fdf82021-11-15T04:28:38ZTwelve principles to support caregiver engagement in health care systems and health research2372-0247https://doaj.org/article/2261b00555f34834ba53d4df7f63fdf82019-04-01T00:00:00Zhttps://pxjournal.org/journal/vol6/iss1/17https://doaj.org/toc/2372-0247Family 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.Kerry KuluskiKristina KokoreliasAllie PeckhamJodeme GoldharJohn PetrieCarole Anne AllowayThe Beryl Institutearticlecaregiverscarersengagementco-designhealth servicesquality improvementhealth careMedicine (General)R5-920Public aspects of medicineRA1-1270ENPatient Experience Journal (2019)
institution	DOAJ
collection	DOAJ
language	EN
topic	caregivers carers engagement co-design health services quality improvement health care Medicine (General) R5-920 Public aspects of medicine RA1-1270
spellingShingle	caregivers carers engagement co-design health services quality improvement health care Medicine (General) R5-920 Public aspects of medicine RA1-1270 Kerry Kuluski Kristina Kokorelias Allie Peckham Jodeme Goldhar John Petrie Carole Anne Alloway Twelve principles to support caregiver engagement in health care systems and health research
description	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.
format	article
author	Kerry Kuluski Kristina Kokorelias Allie Peckham Jodeme Goldhar John Petrie Carole Anne Alloway
author_facet	Kerry Kuluski Kristina Kokorelias Allie Peckham Jodeme Goldhar John Petrie Carole Anne Alloway
author_sort	Kerry Kuluski
title	Twelve principles to support caregiver engagement in health care systems and health research
title_short	Twelve principles to support caregiver engagement in health care systems and health research
title_full	Twelve principles to support caregiver engagement in health care systems and health research
title_fullStr	Twelve principles to support caregiver engagement in health care systems and health research
title_full_unstemmed	Twelve principles to support caregiver engagement in health care systems and health research
title_sort	twelve principles to support caregiver engagement in health care systems and health research
publisher	The Beryl Institute
publishDate	2019
url	https://doaj.org/article/2261b00555f34834ba53d4df7f63fdf8
work_keys_str_mv	AT kerrykuluski twelveprinciplestosupportcaregiverengagementinhealthcaresystemsandhealthresearch AT kristinakokorelias twelveprinciplestosupportcaregiverengagementinhealthcaresystemsandhealthresearch AT alliepeckham twelveprinciplestosupportcaregiverengagementinhealthcaresystemsandhealthresearch AT jodemegoldhar twelveprinciplestosupportcaregiverengagementinhealthcaresystemsandhealthresearch AT johnpetrie twelveprinciplestosupportcaregiverengagementinhealthcaresystemsandhealthresearch AT caroleannealloway twelveprinciplestosupportcaregiverengagementinhealthcaresystemsandhealthresearch
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Twelve principles to support caregiver engagement in health care systems and health research

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