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Troy Media (July 30): Navigating Health and Social System a Challenge to Caregivers

The Canadian Population is aging. For the first time, Canadians 65 years and over outnumber those 14 years and under. To face this major demographic change head on, we need to adapt. In particular, to mee the preferenes of the great majority of Canadians who want to age in the community, we must rethink how we suppor tthe caregivers who make this possible. 

In a recent journal article, my colleague and I argue we must begin by recognizing that the fragmentation of the health and social systems generates a substantial burden for caregivers. Yet this strutural burden of caregiving ofgent goes unrecognized by the system, not to mention caregivers.

Part of the reason is that research has mainly defined caregiving burdent in terms of the time and stress it take to provide care to another person- helping with daily tasks and personal hygiene, for instance. 

But what about the time spent negotiating health care systems, scheduling and getting to and from treatments, often in the middle of the day, figuring out which services will be covered and under which circumstances?

The part of the burdent isn't well-articulated, measured or understood. And it certainly isnt' often appreciated.

As academics in the fields of aging and health services research, we only came to fully realize what this part of caregiving means to the caregiver when we began more actively providing care for our aging parents. We thought we knew what we were getting into.

We anticipated that providing direct care would be challenging and we knew what help to seek and where.

What we weren't prepared for was how much time we would spend and stress we would experience trying to understand, negotiate and manage medical and social care for our loved ones.

What we weren't prepared for was how much time we would spend and stress we would experience trying to understand, negotiate and manage medical and social care for our loved ones.

Particularly surprising was that we both encountered this problem via two very different health system: in Quebec and Florida. Of course, financial worries for health provision were much less prevalent in Quebec than Florida, but they were not altogether absent, as the home and long-term care sector is very much privately financed in Quebec (and throughout Canada). 

Ultimately, we both struggled in remarkably similar ways with negotiating and managing discontinuous and fragmented care and services.

And despite the difficulties we encountered, we recognized that our positions, in terms of education, income and even profession, gave us more social currency and health-care literacy than most- and likely helped us gain information and access to services. This realization left us concerned for the potential that this structural burden has for exacerbating social inequalities among patients and caregivers.

The market has already figured out this opportunity. Private services exist in both countries to assist caregivers navigating the system. This indicates there's real need and that shortcoming in the public sector are being fulfilled by the private sector, at the cost of equitable access.

So what can be done?

First, the structural burden of caregiving has to be included in health policy research and health reform. 

For example, most surveys on caregiving only question how much time caregivers take feeding or bathing their care recipient, or providing other daily tasks such as taking out the trash.

We should increasingly aks how much time and stress is expended by caregivers negotiating with medical and social care systems, trying to figure out which services are available and when. The answer might surprise many health policy analysts- but it won't surprise caregivers.

Wit these numbers in hand, we could advocate for support from governments to fund public navigator services. These services exist in certain areas, such as in cancer and palliative care, but they're not widespread and readily available to individuals without such clear diagnoses and prognoses. In our experience, it would make a world of difference to be able to rely on such support.

It's also important that everyone understand the time and stress involved in managing care and negotiating services is also caregiving. It can be a substantial burden that should be acknowledged and recognized.

Because if we don't care for the caregivers, who will?

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Health Canadacihr logo1This initiative has been generously funded by grants from Health Canada and the Canadian Institutes of Health Research. The views expressed here do not necessarily reflect those of the funders.