Design and Implementation of a Psychotherapy Group Program for Individuals and Families Impacted by Li-Fraumeni Syndrome: A Pilot Study.

OBJECTIVES

There is a paucity of evidence-based psychosocial resources for individuals and families impacted by Li-Fraumeni Syndrome (LFS). This mixed-methods study aimed to (1) establish interest in and need for a dedicated LFS psychotherapy group, (2) design and implement a psychotherapy group, and (3) evaluate participant experiences and gather feedback for future group interventions.

METHODS

Eligible participants were English-speaking, ≥ 18 years, and an individual with LFS or a caregiver/family member. An anonymous needs assessment survey determined preferences, formatting and content for a psychotherapy group. Sixteen virtual psychotherapy groups were conducted between September 2020 and April 2024. Semi-structured post-group interviews assessed group experience and perceived utility.

RESULTS

Majority (77.4%) of survey participants (N = 31) reported difficulty finding support. Participants aged 18-39 were significantly more interested than those aged ≥ 40 in discussing themes such as family planning (p < 0.001), communication with children (p = 0.038), psychosocial support needs (p = 0.004), couple dynamics (p < 0.001), and body image and identity (p = 0.014). A total of 34 individuals joined at least one group, with an average of 6.2 participants/group (range 0-12). Thematic analysis of interviews (N = 14) demonstrated that participants found the group constructive and largely endorsed the format and facilitation. Six interview themes were extracted: Community, Support and Connection, Structure and Delivery, Group Topics and Themes, Education, Group Composition, and Fostering Hope.

CONCLUSIONS

A dedicated LFS psychotherapy group, led by facilitators with LFS and mental health expertise, is an acceptable psychosocial resource offering connection for people with this rare diagnosis. Data provides a format for implementing this intervention at other centers, with potential for future research and improving care.