Exploring What Motivates Parents of Children Living With Medical Complexity to Participate in Research

The study aimed to understand the experience of and identify the motivations for parents participating in health research for their children with medical complexity (CMC). Patient-oriented research strategies are increasingly important in health research to ensure that the voices of patients and parents help shape and direct research programmes. To bring a family-centred and patient-oriented focus to our research and objectives, we asked parents about their experiences when they participated in healthcare research related to their child with CMC.

A parent partner, who also has a CMC, interviewed 12 parents (11 mothers and 1 father) of children living with medical complexity to understand their motivations to participate in healthcare research for their child. The parent partner conducted and transcribed the interviews and led our data analysis. Interpretive phenomenological analysis (IPA) was used to inform our data coding and analytic process.

Parents described numerous reasons for their participation in research about their children. These motivations landed within four main themes: feeling helpless and hopeful, child-centred motivation, being part of something good and forming a relationship with the research team. In addition to these themes, parents highlighted factors that influenced their ability or desire to participate, such as time, capacity and the level of invasiveness for their child. Ultimately, the reflections by parents emphasized their unique lives in caring for their CMC and the need to integrate their lived experiences with the research they engage in.

This study offers important insights for healthcare teams who want to engage parents of CMC to participate in research. Understanding parents' motivation to participate in research can help researchers create richer engagement and more meaningful experiences for themselves and their participants, thereby bolstering research programmes.