Using Your Lived Experience to Influence Health Research

I am a parent partner in disability health research. Caregiver partners in research use their lived experience to influence WHAT is researched and HOW it's researched. We have the opportunity to ease the path of care for other families and improve opportunities for our own loved ones by increasing our knowledge. If this role interests you, ask your GP or specialist provider who to contact about joining a research project in your area. 

Early December in Ottawa, Canada was the place to be for childhood disability researchers and parent partners (youth too!). Back to back conferences hosted by Children’s Healthcare Canada and Kids Brain Health Network offered an amazing opportunity for learning, networking and presenting.

I was only able to attend the last day of Children’s Health Care Canada’s conference on December 10.  As a parent of a son with medical complexity, the morning session titled “Identifying and addressing ‘hot spots’ for children and families with complex care needs” caught my attention. I wasn’t disappointed. Representatives from an innovative complex care hospital-to-home program at Alberta Children’s Hospital described how they successfully broke down silos to enable continuity of care extending to home and school. A parent, Genevieve Curry (who is also a nurse and PhD student) spoke for many parents when she said, “I’ve been on a frantic and isolated journey – keeping our son healthy has come at great personal cost. Very few people get what our life is like. We are like navigators without a map. I just want to be a Mom.” Everyone in the room nodded in sympathy and I reflected that this experience of lonely parenting was common to so many families participating in Child-Bright studies, including one that I partner on, The Strongest Families Neurodevelopmental Program (SFNP).

Dr. Andrea Cross at the podium. Front row: Parents Donna Thomson, Connie Putterman and Rachel Martens. Back row: Parent Kirsty Mardell and researcher Crystal Shannon. 

At the Kids Brain Health Network (KBHN) conference, fellow SFNP Parent/Family Advisory Committee member Kirsty Mardell and I had the opportunity to present on the CanChild Family Engagement in Research certificate program sponsored by McMaster University and KBHN. Parent partner Connie Putterman and I co-developed and we co-instruct the course together with Andrea Cross, a post-doctoral fellow at McMaster’s CanChild. Everyone in the audience had the opportunity to participate in table discussion questions. We compared family partnership in research to a pot-luck supper. Everyone brings something different, but no one knows how the different dishes will create a coherent menu until we arrange the table – together.  We asked participants to consider what they bring to research including skills and qualities that might not be considered traditional elements of research partnerships.

In the panel presentation, we had the opportunity to describe ways that parents such as Kirsty Mardell learned alongside researcher trainees and working together, produced knowledge translation tools for a new generation of research teams wishing to implement best practice in patient/family partnership. Kirsty and her course partner, researcher Crystal Shannon, proudly presented their KT project as part of the poster session. Andrea Cross described how other course graduates had continued working together to create impact by presenting to hospital committees and to provincial policymakers. Andrea’s post-doctoral research will measure the myriad ways that this course is influencing the impact of childhood disability research in Canada.

But the conferences weren’t all business. There was time to meet new colleagues, cement relationships and discuss the myriad ways that we can collaborate not only across Canada, but also across family experience and childhood disability health research.

This is Dayle McAuley from CanChild, Donna Thomson (me), Connie Putterman, Dr. Andrea Cross and Dr. Jan Willem Gorter. We are the 'A' team that co-created and instruct the Family Engagement in Research course. 

If you are a parent of a child with a disability and would like to inquire about taking the Family Engagement in Research course, contact our team HERE. 

And remember, if you are looking for a Christmas gift for a caregiver, consider giving The Unexpected Journey of Caring: The Transformation From Loved One to Caregiver by me, Donna Thomson, and Dr. Zachary White. Available at here in Canada and here in the USA. Merry Christmas and Happy Holidays!