BACKGROUND

It is becoming more common for parents of children with chronic conditions to join research teams as partners. Parent partnerships can help align research with what is relevant and important to families. It is also common for parent partners to be asked to share information about a study through their personal networks, which supports study recruitment. In this parent-led study, we explored parents' experiences when working together with researchers in patient-oriented research studies, in relation to study recruitment.

METHODS

Demographic data were collected through a brief online survey (SurveyMonkey®) and analysed descriptively (n, %, median (interquartile range; IQR)). Qualitative data were collected through focus groups and interviews (July to October 2021), transcribed verbatim, and analysed thematically. Parent co-leads were involved in every stage of the study, including study design, recruitment, data collection, analysis, interpretation, and knowledge mobilization.

RESULTS

Fifteen parents (n = 14 women) who had research partnership experience participated in this study. Most (n = 13) participants self-identified as White or of European descent. The majority (n = 10) had partnered in 1-3 research projects, while five participants had partnered in 4 + projects. Parents had a median of 3 years (IQR: 5) of partnership experience. We identified the following three themes: motivations, authentic partnerships, and learned decision making. Each theme included reflections about recruitment, and about research partnership in general. Motivations included a personal connection to the research topic, a connection to the community impacted by the research topic, and a desire to create change. Authentic partnerships were important for a meaningful experience, and enhanced participant's willingness and ability to share study materials. Learned decision making reflected parents' evolving decisions and practices related to sharing study information or personal information to support research. We provide a summary of participants' recommendations for researchers who work with parent partners, and recommendations for parents as they approach research partnerships.

CONCLUSIONS

Experiences shared by parents who have partnered in research provide valuable information to inform recruitment methods and improve team functioning. Parent partners expressed a willingness to support recruitment and valued a strong research team working together for a common outcome. This study yields a set of recommendations guiding future research that engages parents as team members.