System Challenges and Policy Options

A number of system challenges for caregivers have already been identified across the health care system. The list of research articles and other documents below show the work that has been done by reviewing current programs and through listening to patients and caregivers. The list also includes suggestions on how best to address these important issues through policy.

 

SYSTEM CHALLENGES

Auditor General Ontario.  2015.  Annual Report of the Office of the Auditor General of Ontario – Chapter 3: Community Care Access Centres Home Care Program.

Beed, J. 2017. Expanding Caregiver Supports in Ontario. Advice from Janet Beed to the Honourable Eric Hoskins Minister of Health and Long-Term Care.

The Change Foundation. 2011.  Because this is the rainy day: A discussion paper on home care and informal caregiving for seniors with chronic health conditions.

The Change Foundation. 2012. Loud and Clear: Seniors and caregivers speak out about navigating Ontario’s healthcare system. 

The Carers’ Covenant. 2018. A new settlement between carers and the state.

Dowdell, B. 2016. Feeling at Home: A survey of Canadians on senior care. The Conference Board of Canada.

Gill, A., Kuluski, K., Jaakkimainen, L, Naganathan, G., Upshur, R., & Wodchis, W. 2014. Where do we go from here?: Health system frustrations expressed by patients with multimorbidity, their caregivers and family physicians. Healthcare Policy, 9(4), 73-89.

Health Council of Canada. 2012. Seniors in need, caregivers in distress: What are the home care priorities for seniors in Canada?

Health Quality Ontario. 2016. The reality of caring.

Stonebridge, C., Hermus, G., Edenhoffer, K. 2015. Future Care for Canadian Seniors: A Status Quo Forecast. The Conference Board of Canada.

Williams, A. P., Peckham, A., Kuluski, K., Montgomery, R., Morton, F., Watkins, J. 2010. Formal and informal care for older persons: Assessing the balance in Ontario. Balance of Care Research Group, Institute of Health Policy, Management, and Evaluation. Toronto, Ontario.

Williams, A.P., Peckham, A., Watkins, J., Warrick, N., Tam, T., Rudoler, D., & Spalding, K. 2014. Caring for caregivers: Facing up to tough challenges. Healthcare Quarterly, 17(3):20-23.

 

BALANCING WORK AND CARE

Canadian Human Rights Commission. 2014. A guide to balancing work and caregiving obligations:  Collaborative approaches for a supportive and well-performing workplace.

Duxbury, L., & Higgins, C. 2012. Revisiting work-life issues in Canada: The 2012 national study on balancing work and caregiving in Canada.

Employment and Social Development Canada.  2015.  When work and caregiving collide: How employers can support their employees who are caregivers.

Family Caregivers’ Network Society. 2013. Toolkit for employers: Resources for supporting family caregivers in the workplace.

Fast, J. Caregiving for Older Adults with Disabilities: Present Costs, Future Challenges.

Fast, J., Lero, D., DeMarco, R., Ferreira, H., & Eales, J. 2014. Combining care work and paid work: Is it sustainable? Research on Aging, Policy and Practice.

Fast, J., Dosman, D., Lero, D., Lucas, S. 2013. The Intersection of Caregiving and Employment across the Life Course. University of Alberta, Research on Aging, Policies and Practice, Edmonton, AB.

Torjman, S. Compassionate Care Benefit within Employment Insurance. Caledon Institute of Social Policy.

 

POLICY OPTIONS

Canadian Hospice Palliative Care Association. 2013. Valuing caregiving and caregivers: Family caregiver in the integrated approach to palliative care.

Carstairs, S. and Keon, WJ. 2009. Canada’s aging population: Seizing the opportunity.   Ottawa: Special Senate Committee on Aging.

Colombo, F., Llena-Nozal, A., Mercier, J., & Tjadens, F. 2011. Policies to support family carers. In Help Wanted?: Providing and Paying for Long-Term Care. OECD Health Policy Studies, OECD Publishing, Paris.

McMaster Health Forum. 2014. Improving care and support for unpaid caregivers in Ontario.

Ontario Ministry of Health and Long Term Care. 2009.  Caring about caregivers: Caregiving for the future of Ontario (long range scenario planning supporting caregiving into 2033).

Ontario Ministry of Health and Long Term Care. 2015.  Patients First: A roadmap to strengthen home and community care.  Toronto, ON.

Ontario Ministry of Health and Long Term Care. 2015. Patients First: A proposal to strengthen patient-centred health care in Ontario. Toronto, ON.

Ontario Ministry of Health and Long Term Care. 2016. Patients First: Reporting back on the proposal to strengthen patient-centred health care in Ontario. Toronto, ON.

Bill 41 Patients First Act was introduced by the Minister of Health and Long-Term Care on October 6th, 2016 replacing Bill 210 (introduced on June 2nd and died when the Legislature was prorogued on September 12th,2016). http://www.ontla.on.ca/web/bills/bills_detail.do?locale=en&Intranet=&BillID=4215 

The Carers’ Covenant. 2018. A new settlement between carers and the state.

Torjman, S. 2015.  Policies in Support of Caregivers. Caledon Institute of Social Policy.

Torjman, S. 2011. Policy challenges: The caregiver/care receiver relationship. Caledon Institute of Social Policy.

Vanier Institute. Public Policy Brief: Compassionate Care Benefits.

VON Canada. 2008. Program and policy perspectives on the interplay of risk factors and the associated negative outcomes among family caregivers: Key informant report.

Williams A.P., Peckham A., Kuluski K., Lum J., Warrick N., Spalding K., Tam T., Bruce-Barrett C., Grasic M., Im J. 2015. Caring for Caregivers: Challenging the Assumptions. HealthcarePapers, 15(1); 8-21.

 

FRAMEWORKS, STRATEGIES AND ACTION PLANS

Action Canada Task Force. 2013. Who cares about young carers?: Raising awareness for an invisible population.

Alzheimer Society of York Region. May 2017.  A Planning Framework for Improving Supports to Caregivers.

Canadian Cancer Action Network, Canadian Home Care Association, and Carers Canada. 2017. Advancing collective priorities: A Canadian carer strategy.

Canadian Cancer Action Network. 2013. Canada, a caring society: Action table on family caregivers. 

Carers Canada. 2013. A Canadian caregiver strategy: A Canada that recognizes, respects, and supports the integral role of family caregivers in society.

Carers Canada. 2008. A framework for a Canadian caregiver strategy: A Canada that recognizes and respects the integral role of family caregivers in society.

Carers Canada. 2013. A Canadian caregiver strategy: A Canada that recognizes, respects and supports the integral role of family caregivers in society.

Carers Canada. 2014. A Canadian caregiver strategy: Are we making progress? 

Carers Canada. 2015. Mobilizing Action: Integrated Action Plan. 

Ministry of Health and Long-term Care. 2016. Developing Ontario’s Dementia Strategy.: A discussion paper https://files.ontario.ca/developing_ontarios_dementia_strategy_-_a_discussion_paper_2016-09-21.pdf

Ministry of Health and Long-Term Care and Ministry of Seniors Affairs. 2017. Aging with Confidence: Ontario’s Action Plan for Seniors.

Expert Group of Home and Community Care.  2015.  Bringing Care Home.  Report to the Minister of Health and Long Term Care.

Family Caregivers Advisory Committee and Mental Health Commission of Canada. 2013. National guidelines for a comprehensive service system to support family caregivers of adults with mental health problems and illnesses.

Ontario Medical Association. 2014. Home care: Recommendations to support physicians and patients as they access home care services. 

Senior Friendly Care and Regional Geriatric Program of Toronto. October 2017. The Senior Friendly Care Framework.

Sinha, S. 2014. Caring for unpaid caregivers: Developing an Ontario caregivers’ strategy.

The Carers’ Covenant. 2018. A new settlement between carers and the state.

 


 Note: Links are provided where possible to articles that are accessible to the public. Sources without links are accessible by purchase or through a subscription to an academic journal.

WHAT’S BEING SAID

The Changing CARE teams with the help of additional experts co-designed surveys to probe the experience of caregivers and the experience of providers. Take a look and adapt the survey and questions at your organization: bit.ly/2FlrsEw pic.twitter.com/fULLtnZReR