Accepted for/Published in: JMIR Formative Research
Date Submitted: Jan 11, 2022
Date Accepted: May 20, 2022
Development of a self-management and peer mentoring intervention to improve transition readiness among young adult survivors of pediatric cancer: Formative qualitative research
ABSTRACT
Background:
Childhood cancer survivors require lifelong risk-based follow-up care. Unfortunately, less than one-third of adult survivors of childhood cancer report any survivor-focused care and less than 1 in 5 obtain risk-based follow-up care. It is thought that this may be due to transition readiness, including low levels of knowledge, skills, motivation, and resources to make the transition to independent self-management of follow-up care.
Objective:
This study aimed to identify the content of a self-management intervention to improve transition readiness among adolescent and young adult (AYA) survivors.
Methods:
Intervention development occurred in three stages: (1) formative research with AYA survivors to identify barriers and facilitators to obtaining risk-based survivorship care; (2) content development using feedback from multiple stakeholders (AYA survivors, parents, and providers); and (3) content refinement (usability testing) of the initial proposed educational modules for the program. Content analysis, guided by the Social-Ecological Model of Readiness to Transition, was used to identify themes and develop/refine the content for the intervention.
Results:
The major themes for the self-management modules were: understanding treatment and the survivorship care plan, self-management skills to navigate the logistics of managing health care and insurance, communicating with healthcare providers and family members involved in care, dealing with emotions, and staying healthy in the context of life transitions. Initial feedback from the AYA survivors indicated that the content was relevant, but should include interactive elements (narrated presentations, videos, tailored feedback) to make the intervention more engaging.
Conclusions:
Incorporating AYA survivors, parents, and providers in the design was essential to developing the content of a self-management and peer mentoring intervention. The feasibility and acceptability of the intervention needs to be studied. Clinical Trial: N/A
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