“We need them to listen to both of us”: A race-stratified CBPR focus-group study of communication, inclusion, and care for older lesbian and bisexual women living with serious illness in the Deep South

This community-based participatory research, employing socio-ecological and queer gerontology frameworks, explored the experiences of Black and white lesbian and bisexual (LB) women aged 50 and above living with serious illness and their chosen caregivers. Focusing on communication, inclusivity, and decision-making with healthcare professionals, qualitative analysis of focus group interviews with 18 participants (Black, n = 8; white, n = 10) revealed eight themes and 27 sub-themes. Positive experiences highlighted empathy and respect, while dismissive behavior reflected feeling invalidated. Challenges in disclosing sexuality and navigating relationships were evident, alongside varying levels of disrespect and discrimination. Advocacy emerged as crucial, emphasizing the importance of patient preferences and inclusive decision-making. Factors influencing experiences included communication, health care protocols, systemic issues, and rural-urban disparities. The study identified proxy marginalization experienced by older LB women, emphasizing the need for intersectionality recognition in healthcare. Findings stress the necessity for inclusive, patient-centered care and training programs for healthcare professionals to improve cultural competence and shared decision-making. This research offers critical insights into older LB women’s experiences, urging interventions to address health disparities and promote equitable care for diverse LGBTQ+ populations.