Elizabeth Chambers knows firsthand how childhood disabilities can play out in families’ lives. For instance, she knows that clinicians rarely see her youngest child at his best. “In a clinic or a hospital, you’re not really meeting him, because the environment is so different and overwhelming,” she explained in a podcast episode produced by the journal Developmental Medicine & Child Neurology in 2020. “So, unless I can pull up a video of what he did, or unless you can videoconference into our home, then you won’t get the whole picture.”
In fact, she said, one medical professional was quite dismissive of her son’s abilities until she showed this person footage of him in his usual environment. After seeing it, they tried talking to the child. To their surprise, he responded.
“Medical professionals have the best of intentions,” she says. “And they have a lot of applicable knowledge, but they often don’t know what it’s actually like in the trenches. To be able to share what’s going on in our world with them is very important.”
To help improve healthcare experiences for other families, Chambers is partnering on several research projects at CanChild Centre for Childhood Disability Research at McMaster University. One of these projects is developing a new tool that healthcare organizations can use to determine how well they meet the needs of the families they serve.
As a parent of a child with neurodevelopmental disability, Elizabeth Chambers (centre left) has invaluable knowledge and experience to share with researchers.
Chambers first became interested in participating in childhood disability research when she was searching on Google to learn more about her youngest son’s diagnosis and all the treatments he was undergoing. “I found this world of research where I could be learning more about what’s on the cutting edge — and be involved in changes as they happened,” she says. “To be honest, I also missed having intellectual pursuits: I’m a former teacher, but I had to give that up to become a full-time mom.”
So Chambers signed up for the Family Engagement in Research (FER) Course, a 10-week micro-credentialed online course delivered by CanChild Centre for Childhood Disability Research in partnership with Kids Brain Health Network (KBHN) and McMaster Continuing Education. Since its inception in 2018, the FER Course has been bringing families and researchers together to learn from each other about how to meaningfully partner in research.
Over the 10-week course, Chambers and her peers — half family members and half researchers — discuss topics such as why family engagement in research matters, how families and researchers can find each other, and how they can navigate ethical considerations and power imbalances together.
“You can’t just take people who are from totally different worlds and expect them to work together effectively and efficiently,” explains Donna Thomson, one of the FER Course’s co-founders and a past KBHN Board member. “So, we talk about the facilitators and barriers to successful collaborations. We talk about roles and responsibilities. We talk about tools and resources. And we talk about being an ambassador for this approach.”
In addition, family members and researchers are placed in small groups and work together throughout the course to create a FER resource. “In this way, people are not just learning about the theory of combining their perspectives: they’re actually able to practice it,” says Dr. Andrea Cross, an assistant professor in the Department of Pediatrics at McMaster University and a co-founder of the FER Course.
Chambers shares how she felt empowered by the experience: “For one thing, I gained the confidence to put myself forward and become the co-chair of the family-advisory network at our local children’s center,” she says. “In that position, I’ve worked with a lot of other parents who are struggling and who don’t yet have their voices heard. So not only has it impacted me, but it’s also helping me to impact others.”
A Powerful New Approach
Patients and their families have been “research subjects” for over a century, but their role as “research partners” has evolved over the last two decades.
“We often say that we’re disrupting the traditional research process, because as families and researchers we’re working together as equal partners,” says Andrea Cross. “We aren’t talking about tokenistic engagement where you put a family member’s name on a grant application. We’re talking about understanding that their lived experience has equal value to our academic credentials.”
Families can play a valuable role at every stage of a research project. “Right from the beginning, they need to be there informing the research questions we’re asking in the first place,” says Dr. Samantha Micsinszki, a FER Course graduate and the current FER Program training director. “They can also contribute to data collection, analysis, publishing, presenting at conferences: everything.”
We often say that we’re disrupting the traditional research process, because as families and researchers we’re working together as equal partners,” says Andrea Cross. “We aren’t talking about tokenistic engagement where you put a family member’s name on a grant application. We’re talking about understanding that their lived experience has equal value to our academic credentials.”
The FER Program began with Connie Putterman, Andrea Cross and Donna Thomson (left to right).
Ultimately, engaging with families allows investigators to conduct research that is relevant to families and more likely to positively affect their lives. “There’s a change underway,” says Dr. Vicky Forster, a FER Course graduate, a current FER instructor and the patient and community engagement lead at Women’s College Hospital in Toronto. “Academics are understanding that they need to involve people with lived experience in what they do — not just because it’s nice, but because it makes their initiatives more impactful and innovative.”
Co-Developed by Parents and Researchers
Donna Thomson’s first child, Nicholas, was born with complex medical needs. His doctors diagnosed him with cerebral palsy, but he also had unexplained ailments, the most distressing of which included pain and vomiting. “He was very, very sick,” Thomson says. “It was a medical mystery.”
When Nicholas was two years old, Thomson came across a parent whose child suffered from a similar constellation of symptoms. This mother mailed Thomson a large brown envelope stuffed with photocopies of articles from scholarly journals. “One of them was just spot-on: it could have been written about Nicholas,” Thomson says. Excitedly, she called the author, a pediatric gastroenterologist named Dr. Carlo di Lorenzo.
Thomson wasn’t certain di Lorenzo would welcome a call from a parent, but he responded warmly. “I’m so glad you called,” he said. “Hang up and I’ll call you back, so that you won’t have to pay long-distance charges. I know what’s the matter, and I’ll tell you what you can do about it.”
Following that interaction, Thomson became increasingly passionate about engaging with medical researchers and their work. “The research community was one of the only places that was interested in my son,” she explains.
Meanwhile in Toronto, another parent, Connie Putterman, was also gaining an interest in participating in research. In 2000, her 17-month-old child was diagnosed with autism after her in-laws noticed he wasn’t looking at them. “The clinician who diagnosed him was a scientist,” Putterman recalls. “He said, ‘You know, your son is really young, and we’d love to have your input for studies looking at early identification.”
Putterman went on to participate in numerous studies, research advisory committees and autism research conferences. “I got involved because I was super curious to learn everything I could about autism,” she says. “And in those days, nobody knew much about how to intervene with very young children, so scientists wanted to learn from me, too.”
Unfortunately, not every parent-researcher interaction is as positive and constructive as these two examples — when such interactions happen at all. When Thomson, Putterman and Cross met at KBHN’s 2017 annual conference, their conversation turned to family engagement in research. Although it was becoming a popular notion, the best ways to go about it were not yet well-defined.
“I was nearing the end of my doctoral studies, which had me learning about family engagement by doing it,” recalls Cross. “But I really would’ve wanted an opportunity to learn more about approaching it in a meaningful way. And Connie and Donna said they hadn’t had any formal training, either.”
With funding from Kids Brain Health Network and support from health-service researchers Dr. Jan Willem Gorter, Dayle McCauley and Dr. Patty Solomon of McMaster University, the trio co-developed the FER Course. The first iteration was based on the relevant academic literature that was available at the time, as well as the developers’ own experiences. Since then, they’ve updated the content to incorporate new research and resources in family engagement and made changes to improve the course’s accessibility.
Impacts on Researchers
Dr. Kinga Pozniak is an anthropologist whose research interests include the experiences of disabled children and families with the healthcare system and in the community. One of her aims is to provide suggestions for transforming support systems so they can do a better job of meeting families’ needs.
“I took the FER Course because I do research with families and I thought it was important to give them the best experience possible when they partner on research studies,” Pozniak says.
Having graduated, Pozniak is now leading two projects in which a parent is one of the principal investigators. “These parents happened to be FER Course graduates as well,” she says. “It’s given us a shared understanding of how to work together. It’s nice to have a common cause, common expectations, and a common language.”
Another FER Course graduate, Dr. Ayesha Siddiqua, is a senior epidemiologist at the Public Health Agency of Canada. She has investigated topics such as the social and economic factors that influence the developmental health of kids with autism. “But I have to be honest,” she says. “Before enrolling in the course, I don’t think I appreciated the importance of family engagement in research. Instead, I saw a dichotomy where researchers had the expertise to handle research questions, and families were the beneficiaries. But now I think they’re the real experts because we’re trying to serve them. So, it’s important to collaborate with them from the start, and not just share knowledge with them afterwards.”
I have to be honest,” says epidemiologist Dr. Ayesha Siddiqua. “Before enrolling in the course, I don’t think I appreciated the importance of family engagement in research. Instead, I saw a dichotomy where researchers had the expertise to handle research questions, and families were the beneficiaries. But now I think they’re the real experts because we’re trying to serve them. So, it’s important to collaborate with them from the start, and not just share knowledge with them afterwards.”
For the course project, Siddiqua teamed up with the parent of a child with a medical complexity. “It was eye-opening,” she says. “By working in close contact with families, you learn about their daily lives and the challenges they go through. It helps you to become a more compassionate and empathetic person.”
For instance, if a child has a very functionally limiting disorder, then coming to a clinic to participate in a study could be strenuous for the family. In this case, perhaps a home visit would be more doable. “If you’re not thinking about the research participation process carefully and what challenges it may pose for families to participate, you’re going to limit who takes part and which voices get captured,” says Siddiqua.
Alisha Stubbs — who wears many hats including doctoral researcher, non-profit director and parent of a child with autism — agrees that empathy is key to serving children and families. “It’s important to have an understanding of what people are going through and to be able to say, “Your experience is important. You’re heard and seen and valued.”
Family partner Sara Pot has become an instructor for the FER Course and says she values the community she has gained through it.
Impacts on Families
Like many parents of medically complex children, Rachel Martens once spent much of her time advocating and caring for her son, Luke. “Sometimes, healthcare systems have a way of de-identifying you,” she says. “You become Mom and nobody else if you will. And you might start to see yourself solely as that, too.”
But when Martens first became involved in research in 2016, she felt her identity expanding. “It was like, ‘Wow; my story has worth? I’m not just an anonymous function of care?’” she explains. “It opened a bigger, broader world.”
Martens appreciates that her research partners made it possible for her to engage in projects while also tending to her son’s needs. “I once took part in formal disability-rights discussion while sitting at home on top of a 24-pack of toilet paper with my husband walking by in his bathrobe,” she laughs. “It was surreal.”
Luke passed away in 2020 at the age of 14. In her bereavement, Martens appreciated her connections in the FER community. “I’m still working on what that loss means for the future,” she says. “But I have all these people who are cheering me on. And I cheer on other people, too. That kind of environment is so valuable, personally and professionally.”
Martens is now a knowledge broker for the FER Program. It’s a role that involves developing supportive relationships with students during the course, offering consultations to them as needed, and enabling a sense of community both within and beyond the course.
For instance, Martens moderates a Facebook group created by parents and CanChild in 2015 for researchers and parents who are interested in partnering in research about neurodevelopmental disability or child health. “They can ask questions about different parts of the research process, or share with each other about who’s studying what right now,” she says.
From 2021-2023, Martens and Pozniak also co-led monthly family-directed “research rounds”: virtual presentations and interactive discussions that helped families to answer the question, ‘How could the latest research results apply to my life?’”
Like Martens, Elizabeth Chambers values the community and the sense of identity the FER Course has allowed her to cultivate. “As a medical mama who is often stuck at home or in the hospital, dealing with a roller-coaster of things that are happening, I’m grateful to have connections with others who are like-minded and a stable role as a research partner,” she says.
The FER Course has also given family members the confidence to engage with researchers on their own terms. For instance, they learn that it is reasonable to share certain aspects of their experience but not others. “I’ve reflected more on what’s important to me as the holder of my story,” observes Alisha Stubbs. Going forward, I’d want to be a part of projects that make providing information about my family feel less vulnerable and more meaningful.”
For many family members, a sense of meaning can arise from “contributing to changes that will mean nobody else will have to repeat certain aspects of their story,” says Martens. “That can be very cathartic.”
From Shoot to Garden
As of March 2024, the FER Course has trained 498 people. “We have requests coming in from all over the world,” says Dr. Olaf Kraus de Camargo, a co-director of CanChild. “We’re grateful for the support that KBHN has given to allow this program to grow.”
So far, besides Canada, the course has run out of Australia and the Netherlands. The FER team is also training francophone instructors to deliver it in French and delivering a condensed version that focuses only on the fundamentals. “We heard from FER graduates that people are often too busy to commit to a 30-hour course,” explains Samantha Micsinszki.
However, some graduates want to not only partner in research but also become a champion and leader in the field — perhaps by taking a formal job, starting a podcast or advocating for better family or patient engagement in their place of work. Therefore, once again with funding from KBHN, the FER team created a follow-up course called the FER Leadership Academy. Over 10 weeks, learners meet for small-group discussions and mentorship sessions. Says Vicky Forster, one of the FER Leadership Academy instructors, “Everyone learns from not only the instructors but also from each other.”
Graduates of both courses are force multipliers for the FER Program’s impact. “I can count over 15 FER Course graduates who are in paid positions,” says Andrea Cross. “They’re working in healthcare, health research and community organizations, making a huge difference at an organizational and systems level. And I can’t even count how many are using their skills in research projects.”
Co-founder Donna Thomson is delighted by this ripple effect. “When I think back to the first meetings we had, the FER Course was like a little green shoot coming up,” she says. “And now it’s a big garden. I’m excited to see everything that will happen as this program continues to scale up and spread into other domains of health and other parts of the world in the future.”
Review more details about the FER Course and sign up to gain rewarding FER knowledge and skills here. FER-Course graduates are invited to build upon their learnings through the FER Leadership Academy.
When I think back to the first meetings we had, the FER Course was like a little green shoot coming up,” says course co-founder Donna Thomson. “And now it’s a big garden. I’m excited to see everything that will happen as this program continues to scale up and spread into other domains of health and other parts of the world in the future.”
