Kirsti Mardell never thought she would have a role to play in health research. But her whole perspective changed when her son was diagnosed with autism in 2012.
Her journey began as a participant in an early detection and sibling research study. Mardell subsequently got a taste of a collaborative approach to research through Dr. David Nicolas, a KBHN investigator focused on building capacity to support families raising children with autism in rural areas. His work had a transformative effect on her community in Ft. McMurray, Alberta, and on Mardell herself.
“Seeing the impact research has on this community has inspired me,” she says. The organizing committee that met in 2016, just before a wild fire triggered an evacuation, reconvened the a few months later in 2017 to establish the Autism Society of the Regional Municipality of Wood Buffalo, a non-profit organization. Mardell was left “feeling useful, valuable, and empowered to join.”
An opportunity to do just that came about in 2018 when KBHN Board Member Donna Thomson, mentioned a Family Engagement in Research Certificate of Completion Course (FER) was starting up at CanChild at McMaster University, with funding from KBHN.
Mardell was accepted into the first FER cohort and recently graduated in December from the 10-week online course, which involves live discussions, case study reviews, and group exercises. This past December, she was one of nine parents, jointed by nine researchers, to graduate from the program. To date, 36 students, including parents, trainees in developmental neurosciences, and early career researchers have completed the FER certification.
“This course made me realize that the people who have to benefit are the end users – community members in society. We are the ones who have the most to benefit from research, so we should be as involved as we can,” says Mardell.
Changing Research Culture
Family and patient engagement represent a significant shift in research culture, and a change in status for the beneficiaries of research – from participation, to active collaboration. This phenomenon began in health care delivery, where it is no longer considered optional. In health care research in Canada, it has been helped along by requirements imposed by several funding bodies, as well as research ethics committees and peer-reviewed journals that stipulate that researchers describe their plans for engaging with patients.
As approaches to research are shifting, challenges continue to arise. Researchers often lack the training and information on how to engage families and are left to figure it out on their own. Similarly, many parents of children with disabilities feel adrift at sea in an unfamiliar process.
The Family Engagement in Research Certificate Program was developed to address the key training gaps for both parents and researchers, while also building community and trust.
For Kids Brain Health Network, family engagement is viewed as essential to achieving lasting impact through research. “The impact of research is defined by its effect on the end-user of the new knowledge,” says Dr. James Reynolds, KBHN’s Chief Scientific Officer. “When we engage families in the research program as full partners and co-creators of that knowledge, the probability of uptake and implementation become so much greater.”
Participants have reported important results, according to Donna Thompson, a KBHN board member and one of the parent instructors for the course. “The researcher trainees have realized that the story of their research is a lot more compelling if it is amplified by the voice of lived experience, and families have realized the power of adding research to their lived experience.”
Integrating family engagement into research relies as much on technical training as it does on collaboration.
The three instructors for the course, Donna Thomson, Connie Putterman and Dr. Andrea Cross, postdoctoral fellow and coordinator of the course, created the FER curriculum with overarching goals in mind for both trainees and family learners: commitment to neurodevelopmental research, and mutual understanding of the research process and best practices in family engagement.
“The seed was planted when we recognized that there was a lack of training opportunities out there for both groups,” says Dr. Cross. “The reason that we didn’t want to train them separately is that we really wanted to build a community for mentorship and networking, and something that would grow well beyond the course.”
Topics covered included:
“We’ve all got to start somewhere”, says Crystal Shannon, a researcher trainee who is currently doing her Master’s in Nursing in Kelowna, who participated in the first cohort. “I really like that the research approach enables families to be empowered, for everyone to learn from one another, and for families to really extend themselves and be able to contribute their lived experience. It needs to be heard, and we can make it happen.”
“I think building those connections with the families and other researchers means you’re really building a community,” adds Shannon, “and it’s a community that collectively can branch out and make a difference.”
Kaela Shea, a Brain Canada Fellow and KBHN trainee agrees. “One of my favourite parts was the partnering up of the researchers and family leaders,” she says. “I was a partner with a parent near the place where I do research, so it was great to have the opportunity to meet face-to-face as well. So, we actually formed a really strong relationship, and continued to work together to improve the communication between families and researchers at our institute.”
Breaking New, and Significant Ground
The FER course is one of the first courses of its kind in Canada. While many aspects of the program are forward-thinking and address crucial gaps in training, the graduates are entering a research culture that is often slow to adapt.
“Simply having the adequate training on both sides is not enough,” states Ayesha Siddiqua, a Brain Canada Fellow and KBHN Trainee. “Because ultimately, researchers and parents and families are not the only stakeholders in the picture and there are also other governing bodies that really need to recognize the importance of this kind of work.”
Additionally, some participants anticipate challenges on a personal level.
“I am prepared to keep an open mind, but I’m also prepared to use my voice, when needed, and collaborate more than just being told what I need to do,” says Jeanine Lebsack, a parent graduate from the course.
“I want to be open, respectful, and professional in my own way when dealing with research coordinators. And whatever comes, I want to take that knowledge and use it for the next opportunity.”
A New Beginning
For many of the participants, the FER course sparked an optimism and confidence for the future.
“I can’t say enough about it because it’s changed my world, changed my stars, and I didn’t think that was possible when I got my son’s diagnosis three years ago,” adds Lebsack. “To the best of my ability, I’m going to put out the message that it does exist. It’s just beginning, but it can grow and thrive.”
Lebsack, who has not attended university, was featured as a presenter April 2 at CASDA’s World Autism Awareness Day event in Ottawa. She addressed the complexities of autism and genetics.
For Crystal Shannon, a trainee at UBC Okanagan in Kelowna, British Columbia, “the FER was just the piece I was missing to further engage families during my research. It’s not that I’m doing a bad job at research now, it’s just that it could always be better and improved. And to be able to broaden that approach is going to make that much more of a difference.”
A cohort of 8 parents and 10 researchers just finished the second iteration of the program March 31. As this is a pilot version of the course and part of an ongoing research study, the FER team plans to analyze and report data gathered to date.
Beyond the current research study, both the participants and instructors advocate that this kind of course is relevant, impactful, and should continue.
“We hope it will continue to grow, and that there will be more opportunities for families, for graduate student trainees, and for other researchers to take a course like this,” says Dr. Cross, one of the instructors.
“There’s definitely the need out there. Ultimately, our goal is that we want to see this course become an ingrained course that’s open to continue building a community of families and researchers that are interested in this area.”
“I’m excited and so honoured to be a part of it at the beginning,” says Kirsti Mardell, “because, as I was telling my husband, I think this course will be around for a long time.”
Kids Brain Health Network’s Research Training Committee just approved extension and expansion of the FER course. Two new cohorts will launch – one in Fall 2019, and one in Winter 2020 will recruit 15 families and 15 trainees. Siblings, parents, and caregivers are encouraged to apply for the family openings, and graduate and post-graduate students, as well as research coordinator as well as early career investigators are welcome to apply for the trainee openings. Contact Dr. Andrea Cross, coordinator of the Family Engagement in Research Certificate of Completion Program at crossac(AT)mcmaster.ca.
Kids Brain Health Network is exploring mechanisms to link parent FER graduates with active research programs within Kids Brain Health.
By: Caitlin Young with Bethany Becker