Unmet support needs of sexual and gender minority breast cancer survivors

Abstract

Purpose: This study explored sources of stress and support experienced by sexual and gender minority (SGM) breast cancer survivors and the impact of treatment on their lives.

Methods: SGM breast cancer survivors were identified through purposive and referral sampling and invited to participate in a web-based survey containing both closed- and open-ended items. Sixty-eight SGM breast cancer survivors aged 18-75 years completed the survey between May 2015 and January 2016.

Results: Bivariate analyses of quantitative data reveal that queer-identified (in either sexual orientation or gender identity (SOGI)) SGM survivors are more likely to report having bilateral mastectomy without reconstruction and to think that disclosing SOGI to providers affected their care. Queer-identified SGM survivors are also more likely to use LGBT-specific support groups and to report that their current level of social support is below average. Thematic analysis of qualitative comments revealed themes related to self-disclosure of SOGI to providers, need for recognition and support of partners, need for appropriate social supports for patients and partners, and impact of breast cancer treatment on intimate relationships.

Conclusion: This study provides quantitative and qualitative evidence that many SGM breast cancer patients face a dearth of appropriate social supports, both from breast cancer survivor organizations and from within the medical system. These findings confirm the need for research on the physical and emotional effects of breast cancer treatment on SGM breast cancer survivors, as well as further exploration of the social support needs and experiences of SGM breast cancer patients and their partners.

Keywords: Mixed methods; Relationships; Self-disclosure; Social support.