“Did I get into the twilight zone somehow?”: sexual and gender minority cancer caregiver experiences during COVID

INTRODUCTION: The COVID-19 pandemic created new challenges for cancer patients and caregivers. Little is known about the confluence of the pandemic and people with multiple marginalized identities, such as those in the Sexual and Gender Minority (SGM) community. METHODS: We conducted a mixed-methods pilot study using semi-structured interviews to elicit experiences of cancer among a diverse population of SGM patients and caregivers and a matched set of cisgender heterosexual (cishet) individuals. Here, we present qualitative findings focused on caregiver experiences as ascertained from the broader study. RESULTS: We discovered differences between SGM and cishet caregiving experiences, with SGM caregivers reporting less comfort in the cancer center environment; dissatisfaction with patient–provider communication; feeling excluded from their loved ones’ care; and increased social isolation resulting from the caregiver experience. SGM and cishet caregivers described the detrimental impact of the pandemic. CONCLUSION: Our data suggest SGM caregivers experience additional burdens to cancer caregiving when compared to cishet peers. Although SGM and cishet caregivers reported challenges stemming from the COVID-19 pandemic, challenges appeared greater and more acute for SGM caregivers. Pandemic-related findings point to overall gaps in SGM cancer caregiver supports that may be remedied by additional research and targeted intervention development.