A patient partner from the EMBOLDEN Strategic Guiding Council Launch late 2019, which included attendees from St. Matthew’s House, United Way, City of Hamilton, Hamilton Public Health and the Hamilton Council on Aging, among others.
Published: September 8, 2020
The COVID-19 pandemic has upended plans, closed businesses, forced people into isolation and turned society upside down. For seniors, the impact has been even more marked, with increased vulnerability both to the disease, and to the effects of isolation as a result of public health guidance to socially distance.
The MIRA | Collaborative for Health & Aging, an OSSU Research Centre focused on supporting healthy aging and encouraging patient partnership in research, has pivoted to catch the curve balls thrown by the pandemic.
From creating toolkits for patients and caregivers to offering webinars on patient partnership, virtual care and more, the MIRA Collaborative team members have deftly adapted to the challenge of COVID-19 and its effect on research projects.
A major research project designed to test hospital-to-home transitional care for older stroke patients from a hospital-based stroke rehabilitation clinic was put on hold as a result of the COVID-19 pandemic. The goal of this CIHR-funded research project is to improve the quality of hospital-to-home transitions for older stroke patients. The program will be delivered by an interprofessional team of healthcare providers and involves regular in-home visits, monthly interprofessional team case conferences, system navigation support, and use of an m-health app to facilitate communication among the team.
Partners at Hamilton Health Sciences and Hotel Dieu Shaver Hospital in St. Catharine’s were onboard. But when the pandemic hit, outpatient departments were closed, staff were re-deployed, and the initiation of this research was temporarily delayed.
“The bottom line was we were all set to go and COVID came along,” says Dr. Maureen-Markle Reid, Scientific Co-lead, MIRA | Collaborative on Health & Aging at McMaster University in Hamilton, and principal investigator of the study. “We have two patient research partners with stroke experience – one had a stroke two to three years ago, another last year. They were helping with the study, helping with data collection, all aspects, including recruitment and consent.”
The new program being tested by the research team now involves a hybrid approach, with guidelines to determine who will receive at home visits and who will have virtual visits. Patient and caregiver research partners will continue to work with the researchers to adapt the research to the new reality.
“We need to adjust to this new realism and deliver our program in a different way,” says Dr. Markle-Reid. “We are still planning to do visits, use the app and hold case conferences but we’re not sure if it will be in person or virtual.”
Reduced physical activity and the inability to carry out daily activities are risk factors for frailty, hospitalizations, and premature death. These challenges are compounded during the COVID-19 pandemic for older adults living in areas with high inequities such as lower income and lack of community supports. The EMBOLDEN trial, co-led by Dr. Rebecca Ganann and funded by the McMaster Institute for Research on Aging (MIRA) is a research initiative to promote mobility and social connections for older adults living in areas with high health inequities. The research team is working with citizen partners, health and social service providers to develop an intervention that will enhance mobility through nutrition, social participation, community activity, recreation and more.
“With COVID, we have had to shift design of the study as the local landscape of services has changed – some programs are no longer available so we need to change the intervention,” says Dr. Rebecca Ganann, a researcher at MIRA and an associate professor at McMaster University. “What we were envisioning will shift: we’ll move to virtual data collection.”
“All of us have had our mobility impacted by COVID,” she says. “Many people are getting out less often, feeling less connected so there is an opportunity to make a big impact in the community. Even if we could go forward with a group-based approach, will people feel comfortable? We need to be agile to adapt.”
Access to technology is now essential, but also another hurdle for the researchers and patient partners to overcome.
“Because we are dealing with people with social inequities, we are grappling with the digital divide – some people don’t have digital access so we are working with citizen partners to plan how to best address this,” says Dr. Ganann.
The research team has linked with a broad range of community and social service partners in Hamilton, such as public health, city housing, transportation, parks and recreation, United Way, the YMCA/YWCAs and other community agencies to increase access to services and social connections. These partners helped to recruit patient partners, and to ensure engagement of diverse patient partners, the team conducted outreach to priority neighbourhoods.
In engaging older vulnerable adults in research, it is critical to understand their unique circumstances and perspectives.
“We need to understand the lived reality of people living with several health conditions, who have lots of appointments and challenges,” says Dr. Ganann. “Some like in-person meetings, others want to call in if they can’t get away because of caregiving. Having a menu of options of how to get engaged and choose level of engagement is really important.”
Despite the COVID-19 pandemic, patient engagement in research with and for older adults continues, with a few tweaks, at this leading research institution.
Resources for patients and caregivers
To help patients and caregivers, the MIRA Collaborative also developed a range of tools and resources for patients and caregivers, including the DIVERT-CARE COVID toolkit to identify vulnerable home care patients and the COVID Caregiver Back-Up Plan tool for caregivers to communicate information about caring for their loved ones, especially when regular caregiving schedules have been interrupted or changed.
Visit MIRA Collaborative for more resources and information.
This article was first published on the OSSU. Read the original article here.
