Bringing the Family’s Voice to Research: How Families Contribute to Research (Part Two)

by  Lisa Diller, Seattle, Washington; Paula Drew, Edmond, Oklahoma; Marquitha Gilbert, Philadelphia, Pennsylvania; Nancy Ford, Atlanta, Georgia; tina hjorngaard, Toronto, Ontario, Canada; Kim Rayfield, Philadelphia, Pennsylvania; Barbara Taylor, Pittsburgh, Pennsylvania

This is the second of a two-part article about our experiences as parent members of the On-Track Study research team. In this article we reflect on how our engagement in the research process evolved over four years and about the benefits of including parents as members of the research team. We conclude by offering suggestions for families interested in contributing to research involving children with developmental challenges. Your participation in the research process CAN make a difference to children with cerebral palsy and their families.

How our engagement and experiences evolved the past four years

“As the years have evolved, I have learned to value what I bring and what I have yet to experience or learn, in the care and experiences with my child. In some situations, it seems to me that, the very fact that I am at a different stage in this journey provided a perspective that some of the other parents either did not remember or did not realize may be helpful earlier on. I was also able to extremely appreciate the parents I have grown to admire. Rather than the intimidation I had early on, I was able to learn from them and aspire to do as much or more than they do…. I am still aspiring…” (MG)

“The past four years have been an exciting advancement in the inclusion of parent perspectives in research through the On Track study that expanded from the inclusion of 2 parents to a current dedicated group of 7 parents. We represent a geographically diverse perspective from Pennsylvania, Washington, Georgia, Oklahoma, and Ontario-Canada. A very significant shift from the original ‘parent consultant’ input has evolved to a more profound dedication to include us as ‘parent collaborators’ in not only commentary on the resulting research, but advancing ongoing and future research. The On Track study has committed to value and include parents in the development of research questions and informing how the outcomes are disseminated. This work endeavors to engage academic and community perspectives in research and striving to be equal stakeholders. I am honoured to participate in such active engagement and have learned from each parent and academic team member of the On Track study.” (th)

“Over the last four years the team developed a virtual partnership where we would build off the ideas and comments of others. While both parents and researchers are focused on goals and outcomes and share a common desire for the best outcome for each child, it was very beneficial to define those goals and outcomes in language that parents understand. As parents participating in the research process, we were able to influence how survey questions were asked and how results were disseminated and discussed with study participants. We provided a greater awareness of what daily life is like for a child with CP and their family.” (NF)

“It has evolved from a relationship of ‘me’ or ‘me and Tina’ in relationship to the research team, to ‘me being part of a group of parents and researchers all working together.’” (BT)

“As the study progressed, we participated in focus groups to share our perspectives, collaborated with the researchers to develop meaningful questions and feedback for the exit survey, and created educational materials for families of children with cerebral palsy. This group process and sharing allowed for wonderful ideas and thoughts to evolve, which were then thoughtfully summarized and integrated into the study by the researchers. I appreciated having the opportunity to participate with my family in the educational video, along with two other families, to share a snapshot of our lives and our perspectives of ‘living with cerebral palsy’ ” (LD)

“My initial expectations included a sense of fulfilling an understanding of the endeavor before us and earnestly listening to others, especially the parents. My experiences have been remarkable – from the steadfast encouragement and consideration of researchers and therapists to the immediate association with the moms. Together we collaborated upon each and every proposal cast before us and then we eagerly responded to each challenge.” (PD)

Benefits to including parents as members of the research team

“In the business world, every organization values the “Voice of the Customer,” yet this is something that is often missing in the patient/healthcare continuum. When you include the people who are most impacted by the decisions and processes you create, then you are more likely to have engaged partners on both sides of the interaction. This is what I see is the biggest impact we parents have had with our involvement.” (MG)

“The development of our collective voice and the inclusion of diverse perspectives have been enhanced by mutual support and encouragement that all parents have important input into this research through the valuable knowledge they hold as parents of their remarkable children. It is work that strives to validate and merge clinical research with lived experiences. The dual perspectives immediately enrich the potential outcomes and value of collaborative research for the future.” (th)

“I learned that parents working together with researchers is a powerful combination. Everyone on our team had a voice and we developed a symbiotic relationship, with the common goal to help the child and the family. In many ways, our monthly calls became a “support group meeting by phone.” Parent participation in the research process provides many benefits, including adding credibility to the research study, helping researchers better understand family challenges, communicating questions and results in “family friendly” language, and building a network of parents who can share learnings and experiences. The common theme that guided our work together has been to provide hope to children with CP and their families.” (NF)

“Meeting and hearing from other parents; it is always good to know you are not alone. Contributing to the body of knowledge about our kids’ diagnosis and (we hope) effective therapeutic approaches. Feeling like our family’s experience could be of some help to other families in the future. Encouraging other families to see this diagnosis not as a tragedy but as a constellation of challenges and heart-opening joys.” (BT)

“Including parents on the research team allows parents to collectively share their experiences with other parents, creating a mutual bond, which then facilitates parent collaboration with the researchers regarding modifications to the study, distribution of results, and developing educational materials. By becoming a member of the research team parents can strengthen support for one another and assist researchers in understanding cerebral palsy from a child, parent, and family perspective to develop the best strategies to help our children reach their potential.” (LD)

“Benefits to including parents as members of the research team are: 1) challenges are approached with unique perspectives, 2) the valuable life skills of living with a child/young adult with cerebral palsy are shared, and 3) a personal and genuine advocating for others is accomplished.” (PD)

“The benefits of including parents in the research team is that every parent has a unique way of handling their child and could offer ways for other parents to deal with their child who is facing something similar, or a parent like me who believes every child fits in some way, shape, form, or fashion. Parents really think out the box but won’t allow themselves to speak it in fear that it won’t sound professional or silly. As a parent I would take interest in anything that would make our life less complicated than it is.” (KR)

 Suggestions for parents/families interested in being members of a research team

“If you are interested in helping to shape the things that interest or impact you most, you should first have an opinion, based on fact and experience, and then seek opportunities to share with those with whom it may help. That “share” may help the new therapist or teacher or the focus group at your local hospital, or the training organization for those teachers or therapists. Become both a student and a teacher. Never stop learning and never underestimate how your REAL experiences may shape the future of everything…. At the end of the day, for me, this experience was all about making what I often felt like was a senseless cheat of nature on my motherhood, count for something. I will be forever grateful.” (MG)

“Do it!” (BT)

“Suggestions for parents/families interested in being members of a research team are: 1) thoughtfully contemplate the opportunity to make a significant impact upon others, 2) candidly share your personal thoughts and experiences, and 3) be considerate of each team member’s contribution.” (PD)

We are our children’s voice, the more we unite and partner in research to bring forward our children’s needs, the brighter the future becomes for our children. Remember, always foster hope because we bring families voices to research due to our compassionate love for our children. As Helen Keller so eloquently stated, “Alone we can do so little, together we can do so much. Optimism is the faith that leads to achievement. Nothing can be done without hope and confidence.”

Participating in research is a means by which to influence the advancement of therapeutic, social and political understanding and practices that affect our children now and into adulthood. Great changes have been made over the last 50 years through shifts in attitude and inclusion of children like yours and mine. The next 50 years is the frontier of continued progress necessitated by the voices and experiences of new collaborative teams of academic and community researchers. Our hope is that the next wave includes parents as well as youth and adults. The rewards for participating in research are many faceted and most certainly validates families’ knowledge from lived experience. We highly recommend it.