Accepted for/Published in: Journal of Participatory Medicine
Date Submitted: Jun 16, 2023
Date Accepted: Nov 25, 2024
Tele-Coaching to Improve Self-Management in Adolescents and Young Adults with Cystic Fibrosis: A Community Engagement Approach to Intervention Development
ABSTRACT
Background:
Adolescents and young adults (AYA) with cystic fibrosis (CF) are at risk for non-adherence to their daily treatment regimen due to significant time burden, complicated daily therapies, and life stressors. Developing patient-centric, effective, engaging, and practical behavioral interventions is vital to help sustain therapeutically meaningful adherence.
Objective:
To engage community partners in providing guidance and feedback on the development and refinement of an individually tailored tele-coaching intervention to target adherence and self-management in AYA with CF.
Methods:
AYA with CF, their caregivers, and health professionals from their CF care teams were recruited to take part in focus groups (or individual qualitative interviews), via a video-call interface, to: (a) obtain perspectives on the overall structure, content, and logistics of the intervention (i.e. Step 1); and (b) refine the overall formation of the intervention, and obtain feedback on feasibility, content, materials, and coach training (i.e., Step 2). Qualitative data were analyzed using thematic analysis. Results were used to create and then modify the intervention structure and content in response to community partner input.
Results:
For Step 1, 31 AYA and 20 clinicians took part in focus groups/interviews, resulting in 2 broad themes of (a) video call experience and (b) logistics and content of intervention. For Step 2, 22 AYA, 18 clinicians, and 11 caregivers completed focus groups/interviews, yielding 3 major themes of (a) intervention structure, (b) intervention materials, and (c) session-specific feedback.
Conclusions:
Our Step 1 qualitative findings helped guide the initial development of the structure (e.g., tele-coaching session frequency and duration) and content (e.g., session topics/strategies). Step 2 qualitative results generally suggested that community partners perceived feasibility and practicality of the proposed tele-coaching intervention in promoting adherence and self-management in the face of complex treatment regimens. The diverse community partner input was critical in optimizing our tele-coaching intervention prior to its efficacy testing in future research. Clinical Trial: Not applicable
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