Co-developing a complex transfer intervention with parents: a case study of involvement and parental experience

Research into patient and public involvement (PPI) in healthcare has gained increasing recognition over recent decades. The insights and experiences of parents of adolescents with chronic illness are valuable and can inform adolescent healthcare services, including adolescents’ transfer from pediatric to adult care. However, few studies have documented both the process and outcomes of involving parents in adolescent healthcare research as research partners. We aimed to report and evaluate the involvement of such parents in the co-development of a complex transfer intervention and to assess their experience of involvement. In this case study, we used the ParTNerSTEPs program as an instrumental case of PPI, where participatory design was the overarching PPI methodology. To report and evaluate parental involvement, we applied the Guidance for Reporting Involvement of Patients and Public (GRIPP2) and the Patient Engagement in Research Scale (PEIRS-22). Eleven parents of adolescents with a chronic illness were involved in co-developing the transfer intervention, ParTNerSTEPs; five also participated in a collaboration group. Parents were involved through individual interviews, a World Café workshop, an online brainstorm, individual Teams meetings, and group emails. Three parents from the collaboration group participated as research partners in this case study. They contributed to the analysis of the findings and, together with the research team, formulated recommendations for future PPI. Parents preferred a combination of in-person and online methods to involve them, but emphasized that getting to know the primary researcher was essential before transitioning to online formats. Challenges were identified, particularly in preparing parents for their role in the study. Many were unfamiliar with research terminology and academic English, which at times limited their perceived ability to contribute meaningfully to the intervention’s development and act as co-authors. Nonetheless, the PEIRS-22 total score, completed by parents from the collaboration group, (mean [SD]) was 90.3 (10.8), indicating a very meaningful level of involvement. A combination of in-person and online methods was associated with a very meaningful level of involvement. Tailoring involvement strategies to parents’ preferences and capacities supports meaningful and equitable participation. The Regional Committees on Health Research Ethics for the Capital Region of Denmark (no. FSP 20031083).