'You are at their mercy' : disclosure and trust in LGBTQI+ cancer care

R. Power, K. Allison, J. Ussher, J. Perz, S. Sperring, C. Ells

Research output: Contribution to journalArticlepeer-review

Abstract

Background Lesbian, gay, bisexual, transgender, queer and intersex (LGBTQI+) populations represent an ‘ignored epidemic’ and a ‘growing, medically underserved population’ in cancer care, with preliminary evidence that these communities experience disproportionate cancer burdens and unique psychosocial challenges (e.g. lower satisfaction with care, greater cancer-related distress). Methods The Out with Cancer study is the first international study to explore the experiences of LGBTQI+ people diagnosed with cancer, using a mixed-methods approach (survey, semi-structured and photo-elicitation interviews). This presentation focuses on disclosure and trust in cancer care, from the perspective of LGBTQI+ people with cancer and healthcare professionals. Results LGBTQI+ participants (to date survey n=342; interviews n=105; data collection is ongoing) often reported careful control around disclosure of their sexual and gender identities or intersex variations in cancer care, in part, due to embarrassment, discomfort, and fear of negative reactions. Previous negative healthcare experiences contributed to distrust in cancer care, reluctance to disclose LGBTQI+ status and fears of inequitable treatment. Some participants reported explicit discriminations in cancer care, however, micro-aggressions (e.g. cis-heteronormative assumptions) and systemic absences of services and information tailored to the needs of LGBTQI+ people with cancer were more commonly reported. Healthcare professionals reported lacking confidence working with LGBTQI+ cancer patients, attributed to insufficient knowledge of the needs of these patients, uncertainty of correct terminology, and feeling embarrassed and uncomfortable discussing topics such as sexual needs. Furthermore, healthcare professionals reported lacking information and resources to guide the provision of quality clinical care and decision making with LGBTQI+ patients (e.g. such as the impact of hormone therapies on cancer treatment). Conclusions These findings highlight the need to develop resources for LGBTQI+ people with cancer and healthcare professionals, which facilitate access to information and care that is culturally informed and relevant to the needs of LGBTQI+ communities.
Original languageEnglish
Pages (from-to)A18-A18
Number of pages1
JournalBMJ Open
Volume11
Issue numberSuppl. 1
DOIs
Publication statusPublished - 2021

Open Access - Access Right Statement

This is an open access article distributed in accordance with the Creative Commons Attribution Non Commercial (CC BY-NC 4.0) license, which permits others to distribute, remix, adapt, build upon this work non-commercially, and license their derivative works on different terms, provided the original work is properly cited, appropriate credit is given, any changes made indicated, and the use is non-commercial. See: http://creativecommons.org/licenses/by-nc/4.0/.

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