Project Details

CaregivingGo Back

Episodic Caregiver Support Initiative

By: Donna S. Lero

The Episodic Caregiver Support Initiative (ECSI) was launched in the fall of 2013 as a year-long project designed to explore the needs of family/friend caregivers of individuals with episodic disability in Ontario. Episodic disabilities are long-term conditions such as MS, arthritis, HIV/AIDS, and certain mental health conditions that are characterized by fluctuating periods of wellness and incapacity that affect employment and the need for care and assistance from family members/close friends and professionals. 

ECSI activities began with understanding the needs of caregivers who support individuals with an episodic disability, which involved a review of the literature, a survey of caregivers and persons with episodic disabilities, an environmental scan and an accompanying commentary to the scan, as well as in-person focus groups in order to get a deeper understanding of the challenges that are unique to this subset of family/friend caregivers.

The Canadian Working Group on HIV and Rehabilitation (CWGHR) led the Initiative in partnership with the Centre for Families, Work & Well-Being at the University of Guelph; the Ontario Home Care Association; the Ontario Episodic Disability Network; and, Health Gateway.

The goal of the grant was to develop a preliminary model/framework that responds to the support needs of caregivers of people living with episodic disabilities in Ontario with the intent to encourage policy makers to consider and implement the next steps to improve caregiving in the province. We gratefully acknowledge support provided by the Ontario Trillium Foundation.

The report rolled out today provides an overview of the work and the lessons learned by the project partners.

Read the Executive Summary.

Read the Full Report.

For more info, please contact 

Donna Lero,

Professor and Jarislowsky Chair in Families and Work

Centre for Families, Work and Well-Being

P: 519-824-4120, ext. 53914



1240 Bay Street, Suite 600, Toronto, ON, Canada, M5R 2A7

P: 416-513-0440
F: 416-595-0094