Development of a Complex Intervention to Support Parents of Chronically Ill Adolescents in Transition From Pediatrics to Adult Care (ParTNer-STEPs)

Background: Transfer from pediatric to adult care for chronically ill adolescents is associated with outpatient non-attendance and low treatment adherence in adolescents, and with anxiety and concerns among parents. Recent studies have shown that parent involvement results in better transitions. The aim of this paper was to describe the development, through participatory design, of a brief transition program targeted to parents of chronically ill adolescents. Methods: The study was based on the UK Medical Research Council’s (MRC) framework on developing and testing complex interventions. To increase the program’s feasibility and relevance, participatory design was chosen as the overall method. A collaboration group of parents, adolescents and health care professionals (HCP) were actively involved in the development of the program. The program was developed in three development stages, in accordance with the MRC framework: 1) identifying the evidence base, 2) identifying theory, and 3) modelling process and outcomes. Results: Together with the collaboration group, we developed a brief transition program targeting parents, by undertaking an iterative process, involving a literature review, individual interviews, workshops, online brainstorms and multiple pilot tests. The program, called ParTNer-STEPs (Parents in Transition – a Nurse-led Support and Transfer Educational Program) comprised three components: 1) an informative website, 2) online educational events for parents, and 3) transfer consultations with providers from both pediatrics and adult care. Conclusions: The MRC framework was successfully applied to develop a brief transition program targeting parents of chronically ill adolescents. By incorporating the principles of participatory design in the development phase, we ensured that both parents’ and adolescents’ needs were represented and addressed in the program. Furthermore, the involvement of HCPs ensured the feasibility and relevance of the intervention in clinical practice and will increase the chances of successful implementation. Trial registration ClinicalTrials.gov ID NCT04969328