FOCUS On Us: Adapting a Psychosocial Intervention for LGBTQ+ Cancer Patients and Caregivers Using Community Feedback

Despite LGBTQ+ cancer survivors and caregivers reporting worse physical and mental health-related quality of life than their heterosexual and cisgender peers, few interventions exist to improve their wellbeing.

We are adapting the evidence-based FOCUS Program for LGBTQ+ survivors and caregivers using the ADAPT-ITT framework. Here we present results of "theater test" focus groups conducted as part of the Adaptation phase of that framework.

We conducted 9 focus groups with 45 LGBTQ+ cancer survivors and caregivers from across the United States. Participants were asked to provide general and LGBTQ+ -specific feedback on the 5 FOCUS domains (family involvement, outlook, coping effectiveness, uncertainty reduction, and symptom management) as well as on the format and delivery of the intervention. Interviews were audio and video recorded, transcribed, and coded via qualitative thematic analysis using the Framework Method to capture both a priori and emergent themes.

Proposed LGBTQ+ -specific modifications included acknowledging chosen family; addressing legal issues, experiences of minority stress, and concerns related to body image and gender identity; identifying and addressing gaps in LGBTQ+ -specific support resources; providing guidance on finding credible LGBTQ+ -specific information; and engaging in self-advocacy with providers. More general topic suggestions included addressing the challenges of long-distance caregiving, avoiding toxic positivity, and navigating and appraising the quality of online resources.

Participant feedback informed the development of an adapted, manualized intervention ("FOCUS On Us"). This work addresses a critical gap in supportive cancer care by adapting an evidence-based intervention to provide information and resources designed specifically for LGBTQ+ cancer survivors and caregivers.