Youth feedback through emotional mapping in the Transition to Adulthood through Coaching and Empowerment study

Abstract

Background

Youth with inflammatory bowel disease (IBD) and juvenile idiopathic arthritis (JIA) face challenges transitioning to adult care due to physiological and psychosocial impacts of their disease. Current transition care models vary, and few have been comprehensively evaluated. Previously, we conducted a feasibility randomized-controlled trial (TRACE – Transition to Adulthood through Coaching and Empowerment) testing a Transition Coach Intervention (TCI) supporting youth with JIA and IBD transitioning to adult care. Involving youth as research partners is critical in developing and evaluating transition interventions.

Objective

To evaluate youth satisfaction and feedback on the TCI to inform future study methodology.

Methods

We conducted an emotional mapping exercise to identify emotions youth felt regarding the feasibility study and TCI. In virtual focus groups, participants answered questions about study recruitment, logistics, and transition coaching sessions. To support explaining and recalling their experiences, participants selected responses including: comfortable, supported, safe, worried, confused, frustrated and other. Identifying their emotions supports participants in explaining their experiences.

Results

Eight individuals (n = 4 female, ages 18–19 years, n = 5 IBD) participated in two focus groups (n = 4 each). Participants felt comfortable with the study’s recruitment process. All TCI group participants reported positive feelings, though one felt overwhelmed by the amount of information in one session, and two found the psychologist sessions redundant.

Conclusions

Feedback from the emotional mapping exercise indicates the acceptability of the TRACE study among youth with JIA and IBD. This feedback is critical for planning a larger trial to evaluate the effectiveness of transition coaching in youth with chronic diseases.