'Unco-ordinated and fragmented' system creates more work for caregivers, U of M study suggests

It's harder than it has to be to for some Manitoba caregivers to find the best care for their elderly loved ones, a new study from the University of Manitoba suggests.

"It came down to, you're operating in crisis mode and totally on emotions, and you don't know if you're ever making the right decision," said Sherry Heppner, one of 32 caregivers interviewed by researchers from the school about their experience finding, choosing and accessing services for loved ones.

"Ultimately, when I was dealing with my dad, it was basically positioned to us in hospital, 'Dad can't go home again, you need to find options,'" she said. "And the only option presented — and not to blame an overworked social worker — but [it was], you know, 'Here's a personal care home, here's a list, go figure it out.'"

Based on interviewees' responses, researchers argued confusing bureaucracy and unco-ordinated services put a structural barrier and unnecessary burden on caregivers in the province.

"Part of the problem is that the system's very unco-ordinated and fragmented, and so part of system navigation also involves sort of collating information from multiple sources together and trying to figure something out," said Laura Funk, an associate professor of sociology and lead author of the study.

"If we could move toward a more integrated care system I think that might be one way to help, so that there's a single point of entry for caregivers and then somebody helping them along the way."

The interviews were conducted in October 2014 and May 2015 and lasted just over an hour and a half on average. The finished report, Carers as System Navigators: Exploring Sources, Processes and Outcomes of Structural Burden, was published in U.S. peer-reviewed journal The Gerontologist.

Caregiving 'unpredictable,' experiences mixed: study

According to the report, researchers were striving to get an in-depth, qualitative look at structural burdens and system navigation for caregivers.

Based on the interviews, they broke down caregivers' efforts into three categories: "learning about services and resources, trying to secure access to services and co-ordinating and overseeing the smooth and effective provision of those services."

Many participants described getting confusing or conflicting information from service providers — or no information at all — and called various aspects of the system unco-ordinated, complex and bureaucratic.

In some cases, that can mean more, harder work for caregivers to navigate the system, the study says, although Funk noted participants had varied experiences.

"Part of the challenge here is that caregiving itself is very unpredictable, the nature of care depending on the illness and so on," Funk said.

"But we did find as well that carers had, some more than others in particular, struggles with what we call navigating the system — finding out information about what might be out there in terms of help, formal services, resources available for the person that they were caring for — and that this added to, in many ways … the burden of caregiving for people."

She praised efforts like system navigators who help families within the Winnipeg Regional Health Authority, but the study also identified opportunities to improve the system overall, including streamlined application processes and transparent waitlists.

More research needed: report

Most of the people interviewed for the study had comfortable incomes and high levels of education, the report says, with an under-representation of rural residents and disadvantaged groups.

"The data thus offer less insight into how navigational challenges can interact with socioeconomic disadvantage to generate inequities over time. Future research needs to explore this issue in particular," it states.

The document also called for more research to explore the issue outside of the province and with larger sample sizes.

If you're caring for a sick or aging relative, Heppner said her best advice is to keep asking questions.

"Tap into any lead that you can find, whether it's a personal friend, a family member," she said.

"I often felt … as we were going through it, 'OK, I should've hit age 45 and I should've gone through school to be able to figure out what to do.' There should be some educational course that you take as to how to look after your aging parents and what are the services available to you."