By Renee Greene with Shari Laventure, Justine Lustig and Michelle Pavloff
When Michelle Pavloff sat down at a farm-to-table restaurant to meet with her patient-oriented research (POR) team for the first time, she didn’t know just how significant the input from her patient family partners would be, nor what an impact farm culture would have on the direction of her project.
As Principal Investigator on the Saskatchewan Farmer and Rancher Mental Health (FARMh) Initiative, Michelle was interested in learning what programs, resources and interventions would help support farmers and ranchers who, globally, were found to have higher rates of psychological distress, depression and suicide when compared with the general population. It would be Michelle’s first-time conducting patient-oriented research, and in true-POR form, she invited patient family partners to join her team at the outset of the research process. Even though Michelle had some initial ideas for the project, she soon learned the input of patient family partners would prove invaluable in leading the direction of the research.
Says Justine Lustig, patient family partner on the team, “In that first meeting, Michelle told us about her plan, which included the possibility of building an app to identify mental health resources online. But farmers aren’t going to download an app. They’re not going to feel personally helped online.”
And so, the direction changed to match patient priorities. Patient family partner Shari Laventure adds, “I felt sorry for Michelle that first day because I know she put a lot of thought and effort into it and got shot down. But kudos to her because she was like, ‘yeah you’re right. I get it.’ She’s always been very supportive of what we’ve brought to the table. That’s hugely important in patient-oriented research.”
The team embraced the direction laid out by the patient family partners in those initial meetings. “Early on, our patient family partners identified that we really need to figure out what farm culture is and what it means to be part of the farm community,” says Michelle. “That really drove the way we designed the program and data collection, and hopefully will inform some of our findings. We’ve been able to take the patient family partners ideas and run with them. Others on the research team are humbled by the expertise and input our patient family partners offer.”
Patients as partners in research
Patient-oriented research engages patients, their families, and caregivers as partners on the research team. POR teams are multi-disciplinary – Michelle’s team includes researchers, healthcare providers, and industry partners in addition to patient family partners.
Thanks to supports like SCPOR’s Patient Engagement Application Development Award (PEADA) funding, which supports research teams in engaging patient family partners in the grant development phase of their research, patient family partners were recruited at the onset of the project. “PEADA funding was so instrumental in us getting that Sprout Grant,” Michelle acknowledges. “That face-to-face engagement to have those half day meetings was really important for establishing relationships within the team.”
Confirms Justine, “Overall, I have felt really included and valued. It’s been empowering to be heard in a room full of researchers. There was a lot of shop talk between the researchers, and I’d be like hey – I’m a farmer, I don’t know what that means, and they were really good at explaining what they were talking about.”
Justine grew up on a grain farm and later ran a cattle ranch with her husband. Her interest in the project came from her desire to end the stigma around mental health and ensure access to those in need of support. “I see a lot of my family members and relatives being very stoic and silent about their mental health, and they’re all farmers. It’s exciting to be part of something that’s going to make an impact on people like my dad.”
Shari, who has spent her whole life in the farm industry, reached out to take part in Michelle’s research project because of her own personal experiences, having lost her younger brother to suicide. She wanted to be part of a solution that better supported the farmer/rancher population in the mental health system.
As partners on the research team, Shari, Justine and other patient family partners have contributed throughout the project, from identifying priorities and opportunities for knowledge translation to interviewing participants. They’ve also played a major role in ensuring farm culture was considered throughout.
Interpersonal interaction plays a significant role in farm culture. Says Michelle, “Patient family partners really advocated for going to the farms to collect data - build relationships as part of the culturally appropriate way to collect data.”
Many interviews that were initially intended to take place in person on the farms and ranches had to occur on the phone due to COVID restrictions. Despite that, the one-on-one connection between participants and patient family partners have proven to be impactful. Adds Shari, “I’m a pretty strong person. After some of these calls, I really had to do a check on myself. Hearing the passion and sometimes the hopelessness in their voices; hearing the gratitude that there’s someone out there trying to do something and make a difference - it’s humbling. Afterwards, I’m emotionally exhausted – elated, as well, because they were so open to sharing. These interviews are going to direct us in the ways we need to go.”
Farm culture has played a role beyond the research itself, as was evident by an initiative aimed to raise funds for the project. When a group got together to syndicate a heifer sale, it helped the team see how much support their research had from the farming and ranching community.
“It’s a common way for people to donate – a real grass roots effort to support a project,” says Justine. “If there’s a lot of movement behind the project, they’ll increase the value of this animal to show their support. The fact that people just kept bidding and driving up the price of this animal shows that there’s actually more support for this than we thought there was!”
While part of farm culture brings people and communities together, another aspect holds many back. The team acknowledges a reluctance for this population to seek help for mental health support and recognizes that simply having the systems in place isn’t always enough to support farmers and ranchers. Says Michelle, “The problem is that farmers and ranchers are not always going to seek mental health services. This leads to either staying at home to struggle alone, dying by suicide, or not having the capacity to be productive in their work.”
Another issue stems from the fact that there is no nine to five in this industry, and it can lead to farmers and ranchers delaying their health care. As Justine states, “There should be continuing education for people who are working in rural settings to learn about farmers. You can’t just tell them to take a week off work, because they have to get the wheat in the bin. Some of them are not going to come into the doctor until it’s too late. An injury can turn into a mental health problem because it makes them feel unproductive.”
“The goal,” adds Shari, “is we develop for Saskatchewan farmers and ranchers a safe place where they are going to get the help they may be scared to ask for. There’s a lot of stigma, especially in the rural community. It’s farm culture – it’s not the same as everywhere else.”
At the end of the day, the research is about helping the people who need support.
Says Shari, “Hopefully we’re able to get the supports and the help needed. My goal every day when I wake up, because I lost a younger sibling to mental health, is to maybe save one life. If I can accomplish that, then I’ll be happy.”
“There was a recent survey about burnout in the farm sector, and there are an alarming number of farmers that feel acutely stressed all the time and burnt out,” adds Justine. “I hope that through this research, we can show healthcare providers how important it is to learn about the communities they’re working in so they can be more prepared to help the people they’re trying to support.”
As their first patient-oriented research project, the team has fully embraced the concept.
Says Justine, “I can’t believe that research is usually done without patients included because how could a room of full researchers actually know what’s helpful unless they ask the people that they’re trying to help? I want to do whatever I can to help POR become more mainstream because it’s the only way research should be done.”
Michelle agrees. “I would not do another project again that was not POR. I found it a very enriching experience to work with people with lived experiences on the team. Their ideas are better than mine and they’re contributing more than I could ever have imagined. This has been a very enriching experience for me.”