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Reading: Building a Framework for Caregiver Co-Design and Implementation


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Building a Framework for Caregiver Co-Design and Implementation


Kerry Kuluski ,

Lunenfeld-Tanenbaum Research Institute, Sinai Health System; Dalla Lana School of Public Health, University of Toronto, CA
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Jasleen Arneja,

Dalla Lana School of Public Health, University of Toronto, CA
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Allie Peckham,

Dalla Lana School of Public Health, University of Toronto, CA
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Jodeme Goldhar,

Change Foundation, CA
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Michelle Nelson

Lunenfeld-Tanenbaum Research Institute, Sinai Health System; Dalla Lana School of Public Health, University of Toronto, CA
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Background: In the last decade health systems have been striving to be more ‘person centered’ in the delivery of health services, particularly for people with complex care needs. The efforts of unpaid family and friend caregivers are crucial to meeting the needs of a growing number of people living with complex conditions therefore, maintaining caregivers’ capacity to provide support is important for both care recipients and broader health systems. While caregiving is associated with many positive outcomes, several well-documented negative personal, social, and economic impacts persist. High rates of caregiver burnout and poor health outcomes suggest that policy goals for improved healthcare quality must afford greater attention to caregivers by implementing promising practices to support them in their role. Existing literature offers little guidance to help health systems develop supports for caregivers based on needs outlined by caregivers themselves. Additionally, factors involved in successful co-design and implementation of such services is lacking. We define co-design as programs and services that are i informed by caregiver needs or ii designed by caregivers, with stakeholders like researchers, practitioners and decision makers.

Our team has conducted an environmental scan to identify promising practices that successfully integrate the voices and needs of caregivers. These evidence summaries will be reviewed and best practices shared by a Pan-Canadian gathering of caregivers, researchers, practitioners, program developers and decision makers at a two-day meeting in early 2018. Stakeholders will design a framework outlining structures, processes and outcomes of programs focusing on caregiver needs and barriers and facilitators to program implementation.

Objectives: We have two objectives. First, to discuss strategies for the effective co-design and implementation of programs centering on caregiver needs. Second, to share the framework from our Pan-Canadian meeting and seek feedback on its relevance to attendees and additional factors for inclusion.

Format: During the first twenty minutes, we will provide an overview of the framework and summarize key insights from our environmental scan and stakeholder meeting.

A twenty-minute breakout session will follow, to ascertain feedback on the framework. Audience members will work through two core questions, in groups: i Given your experiences, identify a barrier and facilitator in attempting to co-design/implement caregiver programs; ii Does the framework address all key concerns – which factors are missing?

In the last twenty-minutes, audience members will share their thoughts, and presenters will discuss next steps and identify opportunities to further validate the framework.

Target audience: Anyone interested in integrated care for complex patients, specifically in approaches designed with and for caregivers is welcome to attend the workshop. We would especially welcome healthcare providers interested in co-designing such programs and strategies. Participants may also include caregivers, quality improvement specialists, and researchers.

Learnings: The framework will serve as a testable implementation guide for organizations in various stages of co-design and implementation. We envision two key learnings: i to allow the research team to incorporate an international perspective into the framework ii to provide a tangible tool for program developers to support the implementation of programs designed in response to caregiver needs. 

How to Cite: Kuluski K, Arneja J, Peckham A, Goldhar J, Nelson M. Building a Framework for Caregiver Co-Design and Implementation. International Journal of Integrated Care. 2018;18(s2):86. DOI:
Published on 23 Oct 2018.


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