Written by Renee Greene with Marilyn Barlow, Katie Ottley, Allison Cammer, Alison Craswell and Roslyn Compton
Relationships play a significant role in patient-oriented research (POR). Whether it is the relationship between research team members, with participants or even with the research itself, different relationships provide different perspectives. What Roslyn Compton and her team have learned while researching in long-term care (LTC) in Saskatchewan is that relationships are at the core of everything they do, and that by focusing on the dynamics each relationship brings to the team, they are able to learn more and achieve more meaning in their work.
I had the opportunity to interview Roslyn Compton, Alison Craswell, Marilyn Barlow, Katie Ottley and Allison Cammer to get their perspectives on the research they’re doing together and learn more about the relationships they’ve established during this project.
Roslyn Compton’s research project was driven by the needs of family members looking for the best care places for older adults. Adds Alison Craswell, “Roslyn wanted to improve access to healthcare for people in long-term care. Our model here in Australia included a nurse practitioner student, homegrown within the LTC facility, which was something Roslyn thought would work in the regional and rural areas of Saskatchewan.”
The pre-existing relationship Compton held with Craswell and her team in Australia had provided her with a successful research example in the LTC system. Affirms Craswell, “This research is aiming to replicate the heart of the Australian study, including talking to older people in terms of their needs – learning what works for them and their families.”
As the project started to take shape, Compton, Principal Investigator, affirmed her commitment to patient-oriented research. As a POR team, each member, regardless of their role, is an equal partner on the team. “I’m the co-lead - Principal Investigator is just a title,” says Compton. “The project is co-led by all of us – not just me. Our team practices true patient-oriented research.”
Comprised of seven to eight core members that sometimes evolves to 12-15 members, the team includes Resident Family Partners, researchers, research assistants, policy makers, physicians and other health system staff. Says Compton, “We have people that come and go, people that stay. We accommodate all those needs. Some Family Partners come and go based on interests or health factors, because given the nature of our research, they include a lot of older adults.”
“Sometimes roles and boundaries overlap,” adds Allison Cammer, dietician, and researcher on the team. “I’m here as a researcher, but we’ve had a family member in long-term care, so it’s been a personal journey as well. It allows us to wear different hats. The researcher hat brought me to the team, but we can honour the different experiences of what we each bring to the table.”
Marilyn Barlow, who joined the team as a Resident Family Partner, and is now a Resident Family Partner Research Assistant, agrees. “I’m a retired nurse, and I thought I could bring my voice to the table. My mother is independent living at home, but at some point, we’re all going to need to depend on long-term care.”
And what the team has learned is that long-term care requires so much more than physical care. While the goal, in the words of Roslyn, may be, “get the data to provide the evidence to change the model to meet the needs of residents, families and staff” - something that sounds simple, straightforward, and rather quantitative - the reality is that meaningful long-term care is about more than numbers and calculations. “The true focus of the study has been quality of life,” says Compton. “And the processes that we’ve established revolve around quality of life for the residents and family members and making sure quality of life is integral to new models of care in long-term care.”
The team agrees.
“One of the things that was really important to the Resident Family Partners was that we include quality of life as an index,” says Katie Ottley, a Psychology PhD student and research assistant. “There was significant time put into coming up with a quality-of-life measure.”
Resident Family Partners collect most of the data from residents and their family members using the InterRAI Self-Reported Quality of Life Survey for Long-Term Care facilities (Nursing Homes)©️ (InterRAI QoL-LTCF©️) and interviews. The experience has been mutually beneficial. While the residents and family members provide the team with the data they need, the Resident Family Partners are helping to affirm the resident and family experiences and are expressing – either directly or indirectly – that their input matters.
“It’s important to get the residents’ perspectives,” says Barlow. “That’s what intrigued me the most about this project, is that we’d be interviewing the residents. And what I found when I was completing the [InterRAI QoL-LTCF©️] quality-of-life questionnaire with the residents, even some of those living with dementia, is that the responses were meaningful. People would thank me for asking them questions. It’s not the physical needs – it’s the emotional needs that matter most to them – the relationships and validating some of their responses. You can say to the residents, ‘Yes, I’ve heard that a lot.’ It makes them feel like they’re not alone.”
“We rely on our Resident Family Partners to really see and understand the residents,” says Compton. “It’s the notes in the margin – the little comments made on the InterRAI QoL-LTCF©️ tool that have been significant in determining the story – not just the numbers.”
Resident Family Partners have also played a large role in knowledge translation. The team agrees that POR is about more than academic outcomes – sometimes it’s necessary to get information out there in the moment, for example, through conversations or other less formal mediums, such as posters or newsletters, rather than waiting for a publication.
“The more you become aware of a situation, the easier it is for you to talk,” explains Barlow. “Even engaging with people in my social network or opening up conversations with my mom – those conversations can be hard. But relating it to the research – how do you feel about it? – has made it easier to have the conversation.”
Change has also come from resident suggestions during the interviews. Says Barlow, “I’ve been able to relay a couple of things the residents have suggested to the managers at the long-term care home, and they have followed through. Having the ability to do that really feels like you’re making a difference!”
Adds Ottley, “A resident might be nervous to pass on a message that says something negative but sharing it with an external entity, like the Resident Family Partner, doesn’t assume the same level of risk. It becomes a way we can affect change right now to improve quality of life.
Whether influencing change on the spot or seeking new opportunities to share their findings, the team has worked together to bring ideas to fruition.
Says Cammer, “The POR team pushes for non-traditional risk taking. Taking leaps, knowing you’re supported by the team. For example, Roslyn and Marilyn had a courageous conversation on agism for the human rights commission, with Marilyn bringing that real life perspective based on what she heard from the residents. We’ve also utilized video – a very non-traditional way to help demystify research.”
At the end of the day, it’s all about meaningfulness. As Cammer puts it, “It all boils down to - this has to be meaningful to researchers, residents and their families, and the long-term care system. Researchers, Resident Family Partners, decision makers from the health authority, all trying to make a difference - that’s key to why this works. That ‘meaningful’ speaks to engagement.”
However, what’s meaningful to one may not be meaningful to another. Ottley, who admits to often having a quantitative focus, states, “Data can be perceived so differently. Resident Family Partners read graphs very differently from what I read as a researcher. When analyzing and displaying data, sometimes we have to make compromises that ensures the integrity of the research but also meets the needs of both the research community and those with lived experiences.”
Adds Compton, “It’s not easy to write POR. Trying to translate language that is understood and acceptable as quality by all members of the team – it can be interpreted differently, priorities about what should be included are different. That whole process has been significant in the fact that you don’t just get to put an article out there – you need to ensure everyone sees themselves in the writing – it takes a lot of negotiation.”
And that’s where teamwork and supports from organizations like SCPOR become essential.
“It’s a very respectful team,” says Cammer. “What I found most valuable is keeping our direction and focus on what we should be accountable to in the research. Our team helps to maintain that focus and reminds us why those things are important and what we should be doing. The nature of POR, the SCPOR training we’ve received and the PORLET [SCPOR’s Patient-Oriented Research Level of Engagement Tool] all help us keep our eyes on the prize and ensure the work remains meaningful.”
Now, more than ever, relationships within the team have become significant. Cammer states, “COVID-19 has had such a demoralizing effect, and especially on long-term care. It would be very easy to become desolate about it but working with Resident Family Partners helps us remember that there’s a reason we’re doing this and that there’s hope. It’s been very helpful in terms of research – in terms of everything, really!”
Compton sums up the importance of the team and the relationships they’ve built, both internal and external to the team. “Building relationships – they’re so valuable. We have built a team that is passionate about the research – it’s not just research for research’s sake. It’s not just about the outcome, but also the journey.”