Lori Hale, Executive Lead, Research and Policy and Stephanie Hylmar, Research Associate
3.3 million people in Ontario identify as family caregivers (The Change Foundation, 2016). These individuals provide critical and ongoing support or care to a family member, friend or neighbour. As an essential part of our health and community care systems, family caregivers often have extensive knowledge about health care from their experiences navigating the system alongside the patient.
As a result, family caregivers can provide unique insight on how to meaningfully improve Ontario’s health care system.
The Change Foundation has heard directly from family caregivers and frontline health providers through in-depth engagement activities as part of our strategic plan and The Caring Experience project. We asked both groups about their interactions with each other across health care settings—What got in the way? What went well? What could make it better?
Through this process, we were able to identify four overlapping emerging themes that serve as a starting point for increased stakeholder discussion, consideration and action:
1) Recognition of family caregiver role and responsibilities
At the outset, family caregivers don’t recognise themselves as a “family caregiver.” They are just family stepping up to look after a loved one. As they begin their task, they begin to realise there is a role and it’s an important one.
Many family caregivers said they were often looking for basic kindness, respect and acknowledgement from the health providers looking after their family member. Family caregivers want to be seen as a valuable member of the care team able to offer vital information for care planning.
For their part, providers did recognize the important role family caregivers play in the care of their patients, yet they often felt ill-equipped to provide adequate support and were unaware of what supports might be available in the community.
2) Family caregiver assessment and identification
Identifying the main family caregiver for a patient can sometimes be challenging. In times of illness many family and friends rally to the patient’s side, but identifying who will be the primary support is not always easy. Once identified there is seldom much opportunity to sit down and assess what the caregiver will need to fulfil their new role. Providers pointed to this challenge repeatedly in our engagement with them. For family caregivers, this lack of identification and assessment meant they constantly had to stake a claim for information and other needs.
3) Better communication between caregivers and system providers
Communication between family caregivers and providers across health care settings was a major and overlapping theme. Serious challenges were identified by family caregivers in terms of lack of information and difficulty in navigating a large and multi-faceted health system. Providers remarked that system and funding barriers also hampered communication, not only with family caregivers, but with fellow providers. In every engagement session, communication ran through discussions and various reflections as a common thread and was identified by participants as an area for immediate action.
4) Improved Health and Community Care Supports
Lastly, both family caregivers and providers recognize the need for better supports such as skills training, coping mechanisms, and respite. Simply needing “a break” was top of mind for many family caregivers, as was a request to have contact with consistent home care staff. Providers also recognized that transitions between care settings could be unorganized causing problems and frustration, signalling another area for increased support and communication.
At The Change Foundation, we’ll continue to engage with all health care stakeholders to evolve our system. Over the summer we are developing new funding opportunities and partnerships for organizations interested in working differently with family members to improve the patient and caregiver experience. We are excited to see where patients, families, and providers can work together to make change happen.
Herklots, H. (April 27 2016). Caregivers: Lessons from the UK, Opportunities for Ontario (presentation). Toronto, ON Canada.
Torjman, S. (2015). Policies in Support of Caregivers. Renewing Canada’s Social Architecture.
The Change Foundation. 2016. A Profile of Family Caregivers in Ontario.