Parents of children with disabilities are stepping up to take a powerful role in shaping relevant, impactful research. Their greatest asset: their own personal, lived experiences of caring for their child.

Parents Participating in Research (PPR), a Kids Brain Health Network-funded private Facebook group, is part of an emerging research model that brings parents and caregivers of children with disabilities into research, not just as participants, but as partners.

This approach marks a shift in traditional research culture. Until recently, research has been influenced by factors such as the interests of the researchers, availability of funding, technological development, and policy. The needs of stakeholders, including families raising children with neurodisabilities, have often been overlooked in this scenario. As a result, they feel that research has sometimes missed the mark.

Interest in patient engagement as a means of meeting the needs of stakeholders has been building since 1996, with the launch of project INVOLVE in the UK. Since then, consensus has been growing that stakeholder involvement in research may improve its value, as well as translation of findings into practice. Researchers and their funders are increasingly focused on the question of relevance.

KBHN is currently funding a family engagement project that looks to identify and elicit the needs of families raising children with disabilities in a novel setting: social media.

“When you have researchers and parents together, you really have a powerhouse of knowledge to move forward together,” says Rachel Martens, a parent of a child with a rare chromosome disorder, cerebral palsy, and autism, as well as a moderator in PPR. “It empowers the right people in order to start making the changes that Canada is looking to have, and needs.”

Dr. Jan Willem Gorter, a KBHN investigator, Director of CanChild at McMaster University, and active researcher in PPR, agrees, noting that both parents and researchers have valuable expertise and experience.

“I think the principle needs to be that we learn with each other, about each other, and from each other,” Dr. Gorter says.

Last year, KBHN’s Family Engagement Core used the PPR Facebook group to match 9 families with 5 research teams to work on research funding applications (RFAs). This process is a preliminary stage where researchers put together a proposal to apply for funding.

Through this matching process, parents were involved in various ways, ranging from helping to develop research questions as co-investigators to providing needs assessments through surveys and focus groups.

“We’re moving more towards collaborating with families on research projects,” says Dr. Andrea Cross, a moderator for PPR and KBHN Family Engagement Coordinator. “The families really want to be involved on things that they’re passionate about, so this Facebook group has provided a network for us to bridge those partnerships.”

Steps in the right direction

“Researchers, a lot of the time, have exposure to children and families with these kinds of problems, but that is not their life. They might not know the details of struggles that families are going through.” says Manda Krpan Mesić, a parent in PPR who has a child with cerebral palsy. “Sometimes I think the researchers might miss the boat at times.”

Krpan Mesić points out that research is often directed to interests of the researchers, not necessarily what families with children with disabilities need or want to get researched. This creates a frustrating gap between what is being researched and what is relevant to parents’ concerns.

“The important nuance is that somebody without lived experience should not tell people with lived experience what they need,” emphasizes Samadhi Mora Severino, a parent of a child with cerebral palsy as well as an emerging researcher and PhD student at York University.

“One of the most important things that parents bring is their lived experience and their story,” she says. “Their story needs to be heard to understand what research is important to them and why.”

Through facilitating family engagement in the RFA process, the collaboration aimed to address this gap and make research more relevant to the needs of children with disabilities. By bringing parents and researchers together, research is able to be, not only rigorous and thorough, but also impactful for families with children with disabilities.

As direct stakeholders in disability research, many parents are eager to get involved.

“So often, as parents of children with complex medical needs, we defer to the professionals to determine what is best for our child. I have come to learn that my voice and my opinions are strong and my thoughts and concerns are valid.” Julie Brocklehurst, parent in PPR with a child with cerebral palsy.

“I feel like the researchers are leading the conversation,” Krpan Mesić says. “The researchers come to us once they’ve already figured out what the topic is, it’s not stemming from the parents.” She notes that including parents in the RFA process is a step in the right direction.

As one of the researchers, Dr. Gorter also emphasizes the importance of shifting the current rhythm of research and bringing in parents early.

“If you want to engage with parents and families, you have to do it from the start, not only further along when you need participants for the study,” he says. “It’s great to have the community because, in the end, as researchers, we can do anything, study anything, but that doesn’t necessarily mean it’s meaningful to the families.”

Learning with each other, about each other, from each other

While this building momentum has started to create more opportunities for parents in research, progress comes with its challenges. In the RFA process, the PPR Facebook group was key in mentoring these parents, particularly those who did not come from a research background.

“As parents, we don’t really see how the sausage is made,” remarks Rachel Martens, describing her experience as a parent going into research. “This group gives us a little more clarity as to all the work that researchers go through to make research into policy and the time frame in which a lot of these studies are performed.”

Researchers in the group are also challenged to receive feedback on their work and respond to the stories of the families of children with disabilities.

Dr. Gorter states that, as a researcher, it’s important to go into communities like PPR, connect with families, and welcome feedback and questions on your research. “I think that it’s our turn to make an effort and invest, going to the families where they are,” he says. “In that way, I think most researchers have under-utilized the opportunity.”

“[In the Facebook group], I am constantly learning about the families’ lives, whether it’s the things that are important to them, issues in society, challenges they’re facing, areas of need, areas of celebration,” says post-doctoral researcher, Dr. Andrea Cross.

“It informs the questions I ask as a researcher and impacts me personally as well. I feel very privileged to be in this community.”

Moving forward, stronger together

Jennifer Sprung, the founder of PPR and parent of a child with a rare genetic disorder as well as autism, says that PPR’s potential impact on research is “limitless” and she wants to see the group to make change.

“On both sides, we have a lot of knowledge that we need to share back and forth. We really can’t have one without the other,” she says. “Right now, we really have to strive to work together.”

“Ultimately, we want to bring people together. We’re all human beings, we’re all people and I think that’s extremely important for families. We all have expertise; they have the lived experience and we have the research expertise,” says Dr. Gorter. “If you keep that in mind, then we are all on the same playing field.”

“I plan to continue to be involved with research as it relates to my child’s diagnosis,” says Julie Brocklehurst, “and I hope that it is something other parents would consider as well.”

To equip families and researchers looking to partner in relevant, impactful research, Kids Brain Health Network is partnering with CanChild at McMaster University to launch the Family Engagement in Research Certificate Program. This online course aims to empower families and research trainees as active partners in research.

The certificate program is designed to give these families key knowledge and skills about participating in research along with a tangible picture of what they can expect from their involvement. It also gives KBHN trainees experience with engaging families in various stages of the research process.

Connie Putterman and Donna Thomson are thrilled to be the parent partners, engaged with the design, development, and delivery for this project. They are certain that this model of collaborative learning will “foster relationships that will benefit children with neurodevelopmental disabilities and their families.”

If you are a parent of a child with disabilities and interested in learning more about the Parent Participating in Research Facebook group or the Family Engagement in Research Certificate, you can contact Dr. Andrea Cross, KBHN post-doctoral fellow at CanChild, at crossac (AT) mcmaster.ca.

By: Caitlin Young, KBHN Communications Assistant, with Bethany Becker, Communications Manager