Adaptation and usability study of the fear of cancer recurrence therapy for parents of survivors of childhood cancer (Parent-FORT).

INTRODUCTION: Fear of cancer recurrence (FCR) is a common and distressing concern for caregivers of survivors of cancer. At clinical levels, FCR is persistent, impairs quality of life, increases psychological distress, and increases health-system costs. Emerging evidence suggests that about half of parents of survivors of childhood cancer report clinically significant FCR, with associated negative impacts. No interventions currently target parent FCR. The Fear of Recurrence Therapy (FORT) group intervention efficaciously reduces FCR and improves quality of life for survivors of adult cancer. Our aim was to adapt FORT for virtual delivery for parents of survivors of childhood cancer and evaluate its usability. METHODS: Using the ADAPT and FRAME frameworks, we collaborated with 10 parents with lived experience to modify FORT for this population. Following adaptation, two trained therapists facilitated a usability trial of the adapted program (Parent-FORT) with one group of parents. Therapists and participants completed feedback questionnaires after each session to assess usefulness, usability, and readiness for future users, as well as a final exit interview. Descriptive statistics were used to summarize questionnaire data. Content analysis was used to summarize qualitative data from exit interviews. RESULTS: Five mothers whose children were diagnosed with childhood cancer were enrolled and four (Alberta, n = 2; Ontario, n = 2) completed the usability trial. Significant changes were made to the intervention language and content, resulting in an additional session. Key changes included the addition of exercises on navigating parent-child conversations about new physical symptoms and on exploring identity after cancer. Inclusion criteria were also broadened from one-year post-treatment to one-month post-treatment. Feedback indicated preliminary evidence of usability and acceptability. Qualitative analyses of exit interview data identified four themes: connectedness of the group, general format, satisfaction with the content and exercises, and overall impact. DISCUSSION: Parent-FORT reflects the first FCR intervention designed specifically for parents of survivors of childhood cancer. Meaningful co-design with parents was essential to the success of the adaptation. These preliminary findings support Parent-FORT's readiness for testing in a future feasibility pilot study.