“She’s sort of like a placebo in that she’s not going to cure my cancer, but she makes it a lot more livable.”
That insight is shared by a chronically ill person from the Trail/Castlegar area who was part of ‘NCARE,’ a research partnership between UBC Okanagan and the Greater Trail Hospice Society.
Seven volunteers were selected from the hospice program and given training in “navigation” of healthcare resources, then partnered with two older adults living with cancer or other life-limiting chronic conditions. With the backing of nurse navigator Brenda Hooper, the volunteers made a visit to their clients’ home every two weeks over a one-year period to listen to their challenges and find ways to address those needs.
The hospice volunteers did not give medical advice, rather they looked at unmet needs such as lack of support, loneliness and isolation, and lack of information regarding the person’s condition or treatment. Then with Hooper’s guidance, the volunteer navigator would pass on knowledge about resources that could assist with everyday and long term decisions those living with chronic or terminal diagnoses must inevitably face.
“A lot of it is developing a relationship with the client and their family,” says Hooper, a retired community health nurse and hospice executive chair. “And being that person who is just ‘there.’”
In the August 2016 summary report, NCARE clients rated the service as highly important to their care, while the volunteers reported the role as satisfying and meaningful.
“The feedback we got from clients is that it was really valuable to know that someone would be coming,” said Hooper. “The navigator (role) was very valuable.”
Hooper and Dr. Barbara Pesut, the study’s principal investigator, are sharing the research findings with the general public this week in a “Community Conversation” on Thursday at the Cornerstone Cafe.
“With any research project, part of what they have to build into their project is knowledge translation or what is called ‘KT’,” Hooper explained. “We found out some information now we have to share that information …. and report back to the community because it’s a research project that’s based in the community.”
NCARE is an extension of a years long project that began with Dr. Pesut interviewing people in Trail and Castlegar then identifying supports that would help palliative patients living in rural areas.
From there, the study progressed to hiring Hooper as a “Nurse Navigator” in 2015. That pilot project was Trail/Castlegar Augmented Response or ‘TCARE,’ and involved Hooper visiting chronically ill seniors on a regular basis to help them maintain better, healthier lives through knowledge of available health care resources and services.
“I recruited the volunteers from the hospice program and talked about what we were looking at and what it would mean in terms of time commitment,” said Hooper. “We were very transparent about that. And so we trained these special volunteers, and all were all truly remarkable.”
The study’s participants were dealing with a range of long term illnesses, including cancer,chronic lung diseases, heart failure, and other serious debilitating issues.
The role of nurse navigator and now volunteer navigator, moves palliative care upstream and into the population with chronic illness, said Hooper.
“They are not palliative, they are struggling, when things start to get worse and they’re having to go to the doctor a lot,” Hooper explained. “Often it’s in between first diagnosis and the stages when end-of-life care may be required.”
Hooper likens chronic illness to ,’Humpty Dumpty sitting on a wall.’
“Maybe you will go crashing down, maybe you won’t,” she said. “But when I use those words with people, they nod their heads.”
NCARE is now rolling out in hospice programs across the country, including Nelson, the Okanagan, Smithers, Olds, Alta and Truro, Nova Scotia.
“The ripples are coming out in the next stage,” Hooper added. “What’s happening now is there are other communities who are also taking this up … I am involved in the training program and doing some mentoring by telephone … volunteer navigators are hooked up with their local hospice society, who will be doing the recruiting and matching with local clients.”
Everyone is welcome to the event which begins at 5:30 p.m. To RSVP, contact the Greater Trail Hospice Society at 250.364.6204.