Navigating chronic illness with hometown help

A man in a wheelchair lives alone and struggles to get to a grocery store. The store offers online ordering and pickup, but he doesn’t have a computer. Then his volunteer navigator approaches local grocers until one agrees to take the man’s phone order and bring it out to a waiting delivery driver.

A woman recovering from minor surgery lives alone and needs meal service. Her community does not have Meals on Wheels. But her volunteer navigator knows the local funeral home has a list of people willing to make funeral meals. So she calls the director to put out a request, and the meals arrive.

These examples of creativity impress Wendy Duggleby, co-founder of the Nav-CARE program under which they happen. Nav-CARE—which stands for Connecting, Accessing, Resourcing and Engaging—trains volunteer navigators to help older adults with advanced chronic illnesses in rural communities find and access services and resources. The navigators assess what residents need and let them know what’s available, so residents can choose their options.

“To me, (the volunteers) are truly amazing. They do things that are just so creative, things that none of us—I’m a healthcare provider, I’m a nurse—would ever think about,” says Wendy, a professor and researcher at the University of Alberta.

Wendy and co-founder Barb Pesut from the University of British Columbia first piloted the Nav-CARE program in B.C. in 2015-16. A year later, they tested it in Killam and Camrose with funding from Covenant Health's Network of Excellence in Seniors’ Health and Wellness.

The seniors’ network was happy to back the project because it lined up with many of its priorities—rural, seniors and community-based care, says Jasneet Parmar, the network’s medical director. It also aligned with Nav-CARE’s goal to improve quality of life by letting residents live at home longer and stay connected to their community.

“These (volunteers) are people who live in those communities. They know what’s available in the community, so when they’re navigating resources the wayfinding is easier,” says Jasneet.

Creating “dial and collect” grocery pickup or arranging an ad hoc Meals on Wheels program are just two examples of how local volunteers can use their community connections and personal creativity to help residents navigate the world of healthcare resources and supports. More typical examples include making regular visits, showing them where to order aids for daily living or teaching them how to book transportation to medical appointments in Camrose or Edmonton.

“They’ve now developed this trust and relationship, and sometimes the navigator is able to provide them with a sounding board and the ability to help make good decisions, providing them with as much information as possible,” says Geri Clark, Site Administrator for Killam Health Centre.

In some families, that role is filled by adult children or other relatives, but in many cases they live in a different community. And sometimes aging parents are reluctant to accept help from their kids and are more willing to be vulnerable with a volunteer.

“They know that this navigator will be able to give them information because they’re not going to force them to do anything,” says Geri.

The one-year pilot has ended in Covenant Health's Camrose and Killam sites, but the Nav-CARE program will continue through the Hospice Society of Camrose and District. Jasneet says the seniors' network is talking to Wendy and rural Covenant Health leaders about expanding to other Alberta communities. Nav-CARE has also secured funding to go to 11 sites across Canada, with money to add 15 more.

“We’re hoping for spread and scale,” says Jasneet.

Based on the pilot, Nav-CARE has updated the training and developed an implementation toolkit for communities who want to start the program. One of the big lessons learned in Killam and Camrose is the need to have an experienced volunteer co-ordinator and to let the community “own” their program by setting up a local advisory board and making connections with their own local resources. That’s what ensures the program will continue, long after the funding grants run out.

“They know their communities, they know their resources, they know the people. So they really worked extremely well to set up the sustainability piece,” says Wendy. “It wouldn’t have happened without that.”