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J.W. McConnell Family FoundationRespite for Family Caregivers Project
www.von.ca
Exploring Innovative Projects to Support “Respite as Outcome” for Caregivers in Canada
Respite: A Canadian Perspective
Faye Porter and Bonnie Schroeder
J.W. McConnell Family FoundationRespite for Family Caregivers Project
www.von.ca
Canadian Context
Population: 30 675 398 2.85 million caregivers Canada's land is divided into ten
provinces and three territories Health care is a provincial and
territorial responsibility with established national standards
Home and community care is not part of the national standards
J.W. McConnell Family FoundationRespite for Family Caregivers Project
www.von.ca
Canadian Context
Home and community care is an increasingly important component of the health care system in Canada.
As family caregivers play a growing role in providing care, their need for respite, or time off, is also growing.
All publicly-funded home and community care programs in Canada have some provision for respite for family caregivers.
Respite ‘services’ include in home, day away, and facility based programs.
J.W. McConnell Family FoundationRespite for Family Caregivers Project
www.von.ca
Canadian Context
Demand is high for in-home respite and day programs, however, lower for facility respite.
Elderly spouses and the middle-aged children constitute the majority of caregivers who require respite. Parents of children with special needs also need support.
Disparities of access to respite exist based on income, geography or health condition of the patient.
Policies vary across Canada with respect to the cost of respite – full coverage to income testing.
J.W. McConnell Family FoundationRespite for Family Caregivers Project
www.von.ca
Canadian Context
In all cases, the provincial or territorial home and community care plan allows for extended respite hours during palliative care, with the only limit being availability of resources.
Providing respite in rural and remote areas of Canada continues to be a challenge.
Many jurisdictions do not have designated respite services for family caregivers of those living with mental health conditions.
- Health Canada, 2003
J.W. McConnell Family FoundationRespite for Family Caregivers Project
www.von.ca
Caregiver Definition
Caregivers are individuals who provide the ongoing care and
assistance, without pay, to family members and
friends in need of support due to physical,
cognitive, or mental health conditions.
- Canadian Caregiver Coalition, www.ccc-ccan.ca
J.W. McConnell Family FoundationRespite for Family Caregivers Project
www.von.ca
National Respite Care Project Key Findings (1998) Caregivers, not care receivers, should be the
target for respite care programming. Respite is not a service but an outcome,
resulting from time off from caregiving responsibilities.
Respite care plans should be based on what people actually need rather than preconceived set of services.
Services should be flexible, utilizing a variety of settings, occur in different time slots, and integrate facility-based long term care, community and volunteer services.
- Canadian Association for Community Care
J.W. McConnell Family FoundationRespite for Family Caregivers Project
www.von.ca
Valuing Respite
“Receiving respite should not be presented as the system filling the gap being created by the (failing) caregiver, but rather as a fundamental right of people who take on the responsibility of caregiving” (Canadian Association for Community Care, 1998).
J.W. McConnell Family FoundationRespite for Family Caregivers Project
www.von.ca
CACC Give Me a Break! Report (2002)
Recommended the creation of a national caregiving strategy based on:– Practice: promote best practice
models– Research: support relevant research– Education: increase public
awareness– Policy: integrated framework
J.W. McConnell Family FoundationRespite for Family Caregivers Project
www.von.ca
Respite Definitions
Stolen Moments (Chappell and Hillman, 2000)
Respite as Outcome is defined as “anything that contributes to a caregiver’s emotional, spiritual, physical and/or social rejuvenation, enabling them to have the reserves and resources they need to care.” (McConnell Projects, 1999)
J.W. McConnell Family FoundationRespite for Family Caregivers Project
www.von.ca
McConnell Projects Themes 2000-2003
Voice is defined as caregivers’ views related to what they believe would enable them to obtain respite.
Choice is defined as caregivers’ views related to whether the project intervention(s) provided a range of options for caregivers.
“Respite as Outcome”
J.W. McConnell Family FoundationRespite for Family Caregivers Project
www.von.ca
McConnell Foundation Projects
Explored three broad approaches to creating respite:– providing information to caregivers– influencing health professionals and
health systems – directly working with caregivers
J.W. McConnell Family FoundationRespite for Family Caregivers Project
www.von.ca
Seniors Resource Centre of Newfoundland and Labrador
A province-wide effort to provide information and support to both rural and urban caregivers by building community based networks.
J.W. McConnell Family FoundationRespite for Family Caregivers Project
www.von.ca
Providence Centre
Created more effective ways of providing support to caregivers from cultural communities, beginning with the Sri Lankan Tamil population in the city of Toronto.
J.W. McConnell Family FoundationRespite for Family Caregivers Project
www.von.ca
Family Caregivers’ Network Society
Targeted information and supports to caregivers who are employed, and raised awareness among health care professionals of caregiver issues in care facilities.
J.W. McConnell Family FoundationRespite for Family Caregivers Project
www.von.ca
Hamilton-Wentworth Caregiver Respite and Support (CaReS) Project
Developed tools for caregivers and service providers that will improve respite and support services for caregivers and that can be easily adapted by other communities across Canada.
J.W. McConnell Family FoundationRespite for Family Caregivers Project
www.von.ca
Multiple Sclerosis Society of Canada
Piloted a caregiver recognition special assistance fund providing responsive and flexible funding to caregivers for a variety of purposes such as transportation, house and yard work, recreation, and tuition for courses.
J.W. McConnell Family FoundationRespite for Family Caregivers Project
www.von.ca
VON Canada
Developed best practice and staff education resources to influence the way providers approach caregivers as partners in care.
J.W. McConnell Family FoundationRespite for Family Caregivers Project
www.von.ca
Le Phare/The Lighthouse
Created in-home volunteer recreation program to support the family caregivers of terminally and chronically ill children.
J.W. McConnell Family FoundationRespite for Family Caregivers Project
www.von.ca
Family Caregivers Association of Nova Scotia
Raised awareness of caregiver issues, provided direct support in the form of information to help rural caregivers to access the supports they need and stimulated the development of community response projects to support caregivers.
J.W. McConnell Family FoundationRespite for Family Caregivers Project
www.von.ca
Key Lessons from Evaluation: Respite as Outcome
Information is necessary, but not sufficient for creating respite.
Caregivers will not achieve respite unless they trust that the person they care for is engaged and well cared for.
Providers must become partners and like “trusted family members.”
Providers, policies, and programs must be flexible to the self-identified priorities of caregivers and the person they care for.
J.W. McConnell Family FoundationRespite for Family Caregivers Project
www.von.ca
Key Lessons from Evaluation:Respite as Outcome
More work is needed to support caregivers in identifying what will result in respite for them.
Respite is not necessarily expensive. Caregivers often want quite inexpensive support and recognition.
J.W. McConnell Family FoundationRespite for Family Caregivers Project
www.von.ca
Next Steps: Telling our Story
“This Day is for Me: Caring for the Caregivers” Book
Presenting to 6 different audiences– Governments– Other community organizations– Caregivers– Researchers– Funders– Employers
J.W. McConnell Family FoundationRespite for Family Caregivers Project
www.von.ca
Next Steps: Phase 2
McConnell Foundation will invest for another 3-5 years
VON Canada will be leading the initiative 2 projects moving forward with additional
funding – MS Society of Canada– Seniors Resource Centre of Newfoundland
and Labrador 4-6 new projects will be supported across
Canada with cultural and geographic representation as well as different groups of caregivers
J.W. McConnell Family FoundationRespite for Family Caregivers Project
www.von.ca
Next Steps: Learning from Others
Build our knowledge of ‘respite as outcome”
Develop partnerships throughout Canada and internationally that embraces “respite as outcome”
Build our capacity and support sustainability
Support community development and action