SHRF-supported network of researchers, physicians, clinicians, students, and family members launched in response to pandemic lockdown
By Greg Basky for SHRF
Jim Hutchinson’s wife was diagnosed with Alzheimer’s 10 years ago at the age of 62. Prior to the disease taking over Jane’s mind and body, he says, “she was brilliant and accomplished, fit and healthy, active and engaged, kind and gentle.” Jane died last October, after spending four years and two months in long-term care (LTC).
“When they locked the doors on March 16th, we were probably spending six hours a day just augmenting Jane’s care,” recalls Hutchinson. “She needed help with lunch and supper. And we were trying to give her a couple of extra baths and to be mobilized. None of that was happening without our help.” While he was able to move Jane to a home that welcomed families when the Government of Saskatchewan amended the public health order -- permitting the easing of family presence/visitation restrictions -- she passed away three months later.
Hutchinson decided to channel his frustration and pain into something positive. Hutchinson reached out to Paulette Hunter and Roslyn Compton, U of S researchers he knew were looking at how to make long-term care more resident- and family-focused. He prodded the pair to pull together a team of experts that could serve as a resource to LTC facilities and planners with the Saskatchewan Health Authority (SHA) -- who at the time were preoccupied, struggling to figure out how to keep residents and staff safe in a pandemic.
“In part, my request was in response to my daughter reminding me that when one is in the middle of a crisis, there’s little time to read and reflect,” recalls Hutchinson. “My hope was that they could assemble a group that had already done the reading and reflecting and would be keeping up with the latest developments around the world.”
Hunter, an associate professor at St. Thomas More College, and Compton, an assistant professor in the College of Nursing, took up the challenge. They recruited a team of 25 researchers, physicians, clinicians, students, and family members with expertise in nursing, psychology, nutrition, palliative care, pain management, grief counselling, and daily lived experience. The group they formed became the Saskatchewan LTC Network.
Relationships key to the work of the network
The network, which received a COVID-19 knowledge mobilization grant from the Saskatchewan Health Research Foundation (SHRF), has been working flat out over the past year, conducting rapid evidence reviews for the SHA, publishing research papers, and advocating for unfettered family access to residents during the pandemic and a larger role for family members on care teams. Equally important though, they’ve been sharing their knowledge with one another, then spreading what they learn to others they know in the health system, outside the network.
Hunter describes the network as an “outside the box” group, a think tank of sorts that prioritizes relationship building over churning out products such as reports or academic papers. “Our success has really been more in how we work,” says Hunter. “One person can only do so much, but bringing together 20 or 30 people with unique perspectives and a collective interest in a strong LTC system, there is great potential to inform each other and, by extension, those with whom we are connected. Although among us we have produced some papers and products, the most important outcome of our work has been the strong partnerships, which allow us to carry forward what we learn from family caregivers.”
It’s the relationships that have developed within the network that are the key to its strength, according to Compton. “It’s that same model, or way of doing things, that we would like to see brought into long-term care -- that relationship approach to making change,” says Compton. “That’s a big part of what we’ve been able to achieve, showing how things can be done by engaging with a variety of perspectives -- families, researchers, clinicians, students. A community has a lot of strength to it.”
Family partners are sounding boards, idea generators
A retired RN, Marlene Moorman got involved with the network because she saw it as an opportunity to help make LTC better. She brings to the table her lived experience over the past year and a half: When her father’s dementia worsened in spring 2020, he became a resident in a personal care home, mere weeks before access restrictions were put in place. Moorman says that while the facility was great overall, she knew regular contact with family was the only thing that would help him hang on to what little mental function he still had. “Family presence IS quality of life for my dad!” says Moorman.
She says her involvement in the network has opened her eyes to the struggles so many other families have faced. “When you have been the one to feed your wife until COVID, then you get a call that she isn’t eating well but you aren’t allowed in, where does that leave you? Helpless and frustrated, just like the person you love on the inside.” Moorman has contributed on a variety of fronts, from being featured in a video about family being more than simply visitors, helping write op-eds, and sharing her family’s story at a national conference.
Hutchinson says that because the network’s researchers and clinicians recognize families are critical to the safety and well-being of LTC residents, family partners on the team were involved closely in network projects. “We were sounding boards and idea generators,” says Hutchinson. “Our value came from spending so many hours in LTC that we have a good idea of what works and how these places actually function.”
Students well positioned to carry forward Network’s efforts
Trainees are playing an integral role in the network. Katie Ottley, a member of the team who has just wrapped up Year 2 of a PhD in psychology, says students bring a fresh perspective because they’re younger and not entrenched in the sector. “We don’t have the same tendency to think about things through the lens of what has always been done.”
Students, she says, are the next generation of researchers, clinicians, and family members interacting with long-term care. “Including us in the network helps to guide the direction of future research, clinical practice, and advocacy,” says Ottley, who led the ethics application for one project and was also part of the network’s rapid reviews of best practices. “In the longer term, we also represent a unique opportunity for the network to grow and expand because we are the most likely to move around as we graduate and begin careers.”
Network proving a major support to SHA
Felecia Watson, executive director of Patient Client Experience with the SHA, says the health authority’s advocacy for easing restrictions around family access in long-term care was informed greatly by the work of the network. “They created multiple evidence reviews that were really critical in providing that foundational evidence that we used to create briefing notes and submissions to both the Emergency Operations Centre and the Ministry of Health.” The SHA, she says, worked hand-in-hand with the network to co-design its family presence policy for the pandemic.
The network’s authentic partnership and collaboration with clients and families, says Watson, is a great model for what they are trying to promote and embody within the SHA. “I think they’ve brought a great model to Saskatchewan for us to pay attention to and learn from. For my work within the SHA, the greatest benefit is being able to partner with and learn from them.”
There will be a continued role for the network past the pandemic, says Watson, as the health authority looks at reintegrating family members and recommitting to patient and family centred care. “Honestly, our collaboration with the Long-Term Care Network has been a gift. It’s been a silver lining during the pandemic to have this partnership in place, and what we’ve been able to do (because of them).”
Hutchinson is optimistic the network can make a difference. “The need for change is huge and pressing,” he says. “My hope is that elder care can be reimagined. What happened during COVID defied common sense, defied all the evidence, and basic human decency. We can and must do better, and we need to figure out how to do so. The network is an incredible gift that I hope is put to good use here.”
For more information: https://betterltc.ca/saskatchewan-long-term-care-network/
Family Presence in Long-Term Care During the COVID-19 Pandemic: Call to Action for Policy, Practice, and Research, by Susan Tupper, Heather Ward, and Jasneet Parmar, Canadian Geriatrics Journal, Volume 23, Issue 4, December 2020.