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Impact of COVID-19 on LGBTQ+ Cancer Survivors' and Caregivers' Perceptions of Formal and Informal Social Support (SCI952)

Background: The COVID-19 pandemic has made it difficult for many cancer survivors and their caregivers to access support from providers and informal networks. This may be particularly true for LGBTQ+ groups, who are under-represented in oncology and palliative care research and often overlooked in clinical oncology and palliative care. Research Objectives: We sought to better understand how the pandemic is affecting LGBTQ+ cancer survivors' and caregivers' access to and perceptions of formal and informal support. Methods: Qualitative data were collected via open-ended survey items, interviews, and a focus group with LGBTQ+ cancer survivors and caregivers (n = 19). Questions assessed their perceptions of the impact of COVID-19 on support, including specific challenges for LGBTQ+ survivors and their caregivers. Interview and focus group audio data were transcribed, collated with survey responses, descriptively coded, and summarized. Results: Participants included 11 survivors and 8 caregivers (1 was both) aged 21-81 (M = 41.9); 15 were female, 3 male, and 1 nonbinary; 3 were transgender; 17 were LGBTQ+ (including 4 bisexual, 2 pansexual and 2 queer) and 2 were heterosexual (both caregiving parents). Participants described numerous concerns: 1) anxiety about inclusive care being seen as something "extra"; 2) decreased visibility; 3) potential discrimination without caregiver advocacy during visits; 4) decreased communication with providers; 5) lost opportunities for community connection; 6) lack of relevant support groups and resources; 7) a care landscape changing without meaningful input from LGBTQ+ groups. Conclusion: The pandemic may exacerbate or create new unmet support needs for LGBTQ+ cancer survivors and caregivers. Implications for Research, Policy, or Practice Providers and organizations serving survivors and caregivers should be aware that minority cohorts, including LGBTQ+ survivors and caregivers, may experience increased isolation and marginalization during the pandemic. Their feedback should be actively solicited and incorporated into pandemic-related planning to inform care.

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Journal article
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Journal Of Pain And Symptom Management
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