Peer-reviewed article
Adaptation and usability study of the fear of cancer recurrence therapy for parents of survivors of childhood cancer (Parent-FORT).
Holy C, Brinson J, Gibson-Haerle J, Russell KB, Abbott LS et al. ·
Summary
Written by AI, not yet AICS's view · claude-haiku-4-5-20251001This study adapted an existing therapy for fear of cancer recurrence (FORT), originally developed for adult cancer survivors, for use with parents of childhood cancer survivors. Working with 10 parents in Canada, researchers modified the intervention for virtual delivery and tested its usability with a small group. The adapted program, called Parent-FORT, showed preliminary evidence of acceptability and usefulness, with parents valuing group connection and content about managing parental anxiety after their child's cancer treatment.
Key points
- About half of parents of childhood cancer survivors report clinically significant fear of cancer recurrence with negative impacts on quality of life
- No interventions currently target parent fear of cancer recurrence, despite evidence of its impact
- Co-design with parents led to significant changes including an additional session, exercises on parent-child conversations about symptoms, and broadened inclusion criteria from one-month post-treatment onwards
- Four of five enrolled mothers completed the usability trial; qualitative themes included connectedness of group, format, content satisfaction, and overall positive impact
- Parent-FORT is positioned as the first fear of cancer recurrence intervention designed specifically for parents of childhood cancer survivors
Limitations
This was a small usability study with only four completers from two Canadian provinces, so findings cannot be generalized. The study evaluated feasibility and acceptability rather than efficacy or clinical outcomes, so we cannot yet determine whether Parent-FORT actually reduces parental fear or improves wellbeing.
Abstract
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.
Findings the Hub has extracted
Each claim below is labelled by its type of design and links back to this report.
- Intervention
- Parent-FORT: a virtually-delivered group therapy program adapted from the Fear of Recurrence Therapy (FORT) for adult cancer survivors, modified specifically for parents of childhood cancer survivors through co-design with 10 parents
- Population
- Parents of survivors of childhood cancer in Canada (Alberta and Ontario), minimum one month post-treatment of their child
Key finding
Four of five enrolled mothers completed the usability trial