The importance of caregivers as a resource to the people they care about and within our health care system is clear. Some of the needs of caregivers to individuals living with episodic disabilities are very similar to those who care for the elderly. As such, this group of individuals needs access to information, emotional support and practical resources in their communities in order to sustain their capacities and maintain the quality of family / friend care. But there are unique characteristics that must be considered when setting policy and practice in order to be inclusive of all family caregivers.
Individuals living with episodic disability and their caregivers have remained largely invisible and absent from current policy developments despite evidence that more than 1 million Canadians have an episodic health condition.
The Episodic Caregiver Support Initiative (ECSI) was launched in the fall of 2013 as a yearlong developmental grant by the Ontario Trillium Foundation to explore the needs of family/friend caregivers of individuals with episodic disability in Ontario. The ECSI activities began with understanding the needs of those caregivers who support individuals with an episodic disability, which involved an Episodic Caregivers Support Initiative Literature Review , a survey of caregivers and persons with episodic disabilities, an Episodic Caregivers Support Initiative Environmental Scan Inventory 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.
Realize (formerly 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.
The report provides an overview of the work and the lessons learned by the project partners.