Interview by Jenny Higgins

The COVID-19 pandemic has put enormous pressure on long-term care (LTC) residents and their families.

Fear and anxiety about a new disease can be overwhelming. So too can the effects of isolation due to physical distancing. In Newfoundland and Labrador, LTC homes were under lockdown for four months in the spring and summer.

Now, a team of researchers at Memorial University are collaborating with patient partners who are seniors, the provincial Seniors’ Advocate, and other stakeholders to investigate how the lockdown affected the mental and physical health of LTC residents and their families. Their project is one of 10 that was awarded COVID-19 Quick Start for Public Engagement funding through Memorial's Office of Public Engagement.

We spoke about the engagement process with Kathleen Mather and Chelsey McPhee—both with NL SUPPORT in the Faculty of Medicine—and with Newfoundland and Labrador’s Seniors’ Advocate, Dr. Suzanne Brake.

Engagement is founded on mutual contribution and benefit, with all parties learning from each other as they share knowledge, expertise, and skills. How does this statement hold true for your project?

SB: This is the first time I’ve been part of a patient-partner process and I think that it’s essential. I have a strong belief in the concept of participatory research and, being the Seniors’ Advocate, I believe that it is vital to hear from those people who are affected by the research and who are most involved in the work that I do. An extremely important part of this project is the public engagement piece.

CM: Engagement is very much at the core of this project. The research idea came from a patient partner and this project is NL SUPPORT’s first Patient-Initiated Research project. Our team is made up of individuals who bring a variety of perspectives—we have members who bring academic perspectives, lived experience, clinicians, and advocates. This allows us to draw on everyone’s unique knowledge to better the project design and outcomes.

KM: The collective experience has been invaluable to the project’s development. A specific example of how we have benefitted from team members’ experiences is in our methodology. The NL Seniors’ Advocate and patient partners emphasized that we choose a methodology that does not predispose an already vulnerable population to any potential or perceived judgement by the institutions or their staff.

Originally, we planned to have institution staff help administer a paper copy of the questionnaire to residents who were unable to complete it over the telephone. However, it was pointed out that the association of institution staff with our project might influence respondents to not share certain things, given that we are asking about potentially negative experiences during the lockdown.

CM: As this project is specifically geared towards determining the impact of the lockdown on residents in LTC, we will be able to bring recommendations forward to help improve mental and physical health outcomes for residents and families as we continue to navigate COVID, and for future pandemics.

What does public engagement bring to health research overall?

KM: Often researchers have a good theoretical understanding of the topic area, but may not have practical experience. By including members of the public with lived experience of the topic, the research benefits from the perspectives gained from having a condition or experience, or from working closely with those who do. This can be transformative from a clinical research perspective—sometimes what researchers focus on is not what is of greatest concern to patients and clinicians.

SB: I’ve been advocating for more researchers to do work in the area of aging and seniors since way back in the early 2000s. I felt that there was a real lack of research that was focused on seniors themselves, and hence there was also a real lack of researchers with that interest. Even today, ageism is still a real problem and an issue in society. But even back in 2005, when I became the Director of the Seniors and Aging Division and the province developed the first Healthy Aging Framework, one of the goals was to try to instigate more research. Engaging the people themselves—seniors themselves—in that process is essential.

What advice would you give to someone developing a public engagement project?

SB: If a researcher has an idea, then the first thing that needs to happen is to gain input from the people who would be affected. If it’s research about seniors, the first thing that needs to happen is to engage and affirm that this is an issue of concern or interest to seniors themselves. Right from the get-go, the research idea should be embedded with people it’s impacting—engage them right from the beginning of the research, with the concept, the idea.

CM: Know that this process takes time! Including a variety of perspectives on a team requires additional time to appropriately incorporate the areas of importance to each team member, and may involve several meetings to determine how best to achieve that.

A lesson that we’ve learned is that it is so important that every team member is clear on the other members’ roles and these role descriptions may need to be revisited over several meetings until everyone has a good handle on them. Doubly important is that every member has an opportunity to be and feel heard.

SB: Sometimes, seniors themselves might need greater support or help in terms of how to participate. For example, some seniors are not using computers. More and more are, because our world is greatly focused on communicating in that way, but you still need to do face-to-face interviews. If you were doing a study and you wanted to engage the public on birth control or something to do with planned parenthood, then the computer, or your iPhone, or Twitter are excellent ways to capture that audience in today’s world. But researchers must develop a variety of ways of reaching out to seniors. Even something like VOWR—there are tons of older adults who listen to that radio station. But the most important way is to just ask them. As Seniors’ Advocate, I’ve heard over and over again: “If somebody had asked me, I would have participated.” People like to be asked.

KM: When working with members of the public, it is very important to think of their unique needs. A project working with seniors may need to consider accessibility—perhaps someone needs additional support to accommodate hearing loss in meetings, or someone needs a support person to attend meetings with them. It is also important to consider the research experience of team members. Clinicians and members of the public may not have prior research experience. Discussions about technical research details (methodology, data analysis etc.) should be thorough and in plain language where possible.

CM: Open communication and a willingness to adapt is also vital! Once you have developed your team, ask them if there is anything they need to fully contribute. Offer ongoing opportunities for team members to engage with the process and offer suggestions to ensure full and open participation. Something as simple as using first names in meetings can help to make everyone feel like an equal member of the team and reduce barriers for members of the public to participate in team discussions.

Is there anything you would like to add?

CM: NL SUPPORT exists to support patient-oriented research in Newfoundland and Labrador. If anyone is working on a project with the public and would like advice or support, we are happy to help! Along with knowledge translation and patient engagement support, we provide a free training program, currently delivered online, with topics designed to build capacity among attendees to conduct patient-oriented research themselves.

You can also take a look at our upcoming events. 

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Jenny Higgins is a writer and researcher living in Flatrock, Newfoundland and Labrador. Her work has been published in newspapers and magazines, including Newfoundland Quarterly, on Memorial University’s Newfoundland and Labrador Heritage Website, and broadcast on CBC Radio and Television, among many others.