Laesa Kim – Laesa Kim is author of the award-winning memoir, Can’t Breathe. She is a vocal advocate for the medically complex community, works as a parent partner in pediatric health research and shares her lived experiences on social media to connect with other medical families.
Black, A., Strain, K., Wallsworth, C., Charlton, S.-G., Chang, W., McNamee, K., & Hamilton, C. (2018). What constitutes meaningful engagement for patients and families as partners on research teams? Journal of Health Services Research & Policy, 23(3), 158–167.
The Journal Club for Parents of Medically Complex Children meets bi-annually to discuss current literature that features topics of interest to families that include children with rare diseases or other medical complexities. In November 2022 our Journal Club session revolved around a discussion of parent participation in pediatric health research. Patient Oriented Research is a growing area of interest and activity that has permeated Siden Lab (the host of the Journal Club) projects for years. Over this time the depth and richness of patient participation in research has increased. It has moved from simple study feedback forms to participants forming study advisory boards and some even joining research groups as paid staff, such as myself. Today patients have the opportunity to educate themselves in the area of patient-oriented research (POR) through university programming (McMaster) and there is increasing evidence of active patient engagement in research in the literature.
The definition for parent participation in research is broad. The articles featured in our discussion saw parent engagement roles ranging from participants on a study registry for children with intellectual disabilities, to parents accompanying their children to an IBS treatment center, and finally to a review of 19 seasoned patient research partners (PRPs) or “Super Patients” (Black, 2018, p. 160). As the field is still growing, the possibilities for parent engagement continues to evolve as well. Questions regarding who can hold the role of a patient partner, in which capacity they will serve and what activities they will engage in are still open. The feedback from the parents in our journal club was similar, in their experiences there was no singular definition for the roles they have held within the world of research – their experiences ranged from participating in studies to leading research interviews. Some participants had even joined the session to learn in which ways they may get further involved with research as patient – or parent – partners.
It’s obvious that there is both a desire by parents to be involved in whatever capacity might be available to them and a pressing expectation by researchers to create space for parent participation in their research, beyond that of just subjects in a study. Parents have much to offer in keeping research relevant to the needs of the patients being cared for, as well as opening the door wider to patient communities and networks otherwise closed off to most research teams. Likewise, researchers can offer parents opportunity to further advocacy efforts and become empowered to use their lived experience expertise in new ways. Mutual rewards by both parties make these experiences positive, something to keep coming back to, which has been true for Siden Lab researchers and the Journal Club participants in our discussion.
As we look to the obstacles researchers and parent participants face in making patient-oriented research a reality, however, it becomes evident how “Super Patients”, as described by Black, may come to be. There are social determinants that affect one’s likelihood to participate, and much administrative and training hurdles to address and overcome on the researchers end. It becomes convenient, easy perhaps, to continue to engage the same parent participants, again and again.
My own expertise, perhaps as a “Super Patient” parent, began to grow seven and a half years ago. My daughter was born with multiple health complexities, many of which required training and resources and supplies to have her discharged and home from the NICU. Though I was perhaps thrown into this role, it has been essential to my own survival to become good at navigating health systems and community supports, and to be an expert in the realm of her complexities. These skills transitioned comfortably into the clinical/research space, contributing as a parent partner in research myself. Though I honour the work that I put in to get here, I also recognize the layers of who I am, where I live, what my upbringing is, the supports that I have in place which have contributed to the ease of me becoming a part of the research world and remaining here.
An important question that must remain at the forefront for both researchers and parent participants in research is who is still missing from this table? And, even more importantly, what needs to change or be developed to get them there?
If parent participation in research is a mutually beneficial activity, it would only further benefits by continuing to press for diverse and original voices and perspectives. I am just one.
Barned, C., Dobson, J., Stintzi, A., Mack, D., & O’Doherty, K. C. (2018). Children’s perspectives on the benefits and burdens of research participation. AJOB Empirical Bioethics, 9(1), 19–28.
Conners, F. A., Phillips, B. A., Rhodes, J. D., & Hamilton, J. C. (2014). Family Experience in a Regional Participant Contact Registry for Research on Intellectual Disability. Intellectual and Developmental Disabilities, 52(2), 112–123.