Empowering Young Persons with Congenital Heart Disease: Using Intervention Mapping to Develop a Transition Program - The STEPSTONES Project

Purpose: Describe the implementation of intervention mapping in the development of a transition program that aims to empower adolescents with congenital heart disease.

Design and methods: To gain a better understanding of the problem, we conducted a literature review, focus group and individual interviews, and a cross-sectional survey. This information helped us decide on the scope of the intervention, relevant theories, determinants, formulate performance and change objectives and identify adequate evidence-based change methods. Once the transition program had been designed, effectiveness and process evaluation studies were planned.

Results: Young persons with congenital heart disease have insufficient disease-related knowledge, self-management skills and high parental involvement. The transition program involves three meetings with a trained transition coordinator over a two-and-a-half-year period and targets young persons with congenital heart disease and their parents. The transition coordinators use change techniques such as goal-setting, modeling and active learning in order to target three personal determinants (knowledge, self-efficacy and self-management).

Conclusions: The use of intervention mapping may lead to designing interventions tailored to the needs of the targeted population. The transition program described in this paper is currently being evaluated in a hybrid experimental design with simultaneous undertaking of the process evaluation.

Practice implications: This transition program can lead to the empowerment of young persons with congenital heart disease and help them in the process of becoming more responsible for their care. If proven effective, it can be implemented for other chronic conditions.