“It's Always in the Back of your Mind”: LGBTQ Partners’ Experiences of Discrimination in Health Care for Serious Illnesses
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Abstract “It's Always in the Back of your Mind”: LGBTQ Partners’ Experiences of Discrimination in Health Care for Serious Illnesses Danae G. Dotolo Chair of the Supervisory Committee: Taryn Lindhorst, Professor School of Social Work Purpose: This dissertation examines the experiences of lesbian, gay, bisexual, transgender, or queer (LGBTQ) adults caring for a partner receiving healthcare for a serious illness. Although discrimination in health care and health inequities experienced by LGBTQ people are well-documented, less is known about healthcare for serious illness. This study aims to help fill that gap by analyzing partner reflections on their experiences, focusing on the influences of socio-political factors, such as heteronormative culture, relationship recognition laws, and healthcare organization policies guiding the identification of legal next of kin. Methods: Data include a purposive sample of interviews with LGBTQ caregiving partners (n=57) who described either experiences of discrimination or anticipatory concerns about discrimination prior to healthcare interactions. The data were gathered from April 2012 through June 2013. Study participants received care in 20 states plus the District of Columbia. Data were analyzed using interpretive description and thematic analysis qualitative methods. Results: Two analyses were conducted in this study. First, legal consciousness was used as a theoretical framework to examine reciprocal social processes in which partners and clinicians create, interpret, comply with, and resist law within healthcare interactions. This analysis yielded three themes: 1) awareness of legal status and expectations of (il) legality, 2) presumptive political (un)safe zones, and 3) legal grey areas. Second, perceived discrimination provided a theoretical framework to analyze how partners identify and interpret discrimination or potential discrimination in interactions with clinicians. Partners were found to experience three types of discriminatory communications or behaviors: 1) overt and intended, 2) covert and duplicitous, and 3) covert and unconscious. Further, nonverbal communication was identified as one way in which discriminatory attitudes were expressed by clinicians. Discussion and Implications: This study demonstrates that LGBTQ partners experience discrimination in healthcare interactions in both overt and covert ways. Partners’ efforts to anticipate, mitigate, identify, and interpret discrimination in the already difficult setting of healthcare for serious illness represent undue burden on LGBTQ partners compared with their heterosexual married counterparts. The results indicate that policy and practices should be improved to better support LGBTQ partners and reduce health inequities.