Pinpointing Patient Needs

Rachael Wandrey, with the support of her mentor, Katie E. Mosack, is studying the unique experiences and social support needs of a virtual community of lesbian breast cancer patients. She believes not only that lesbian women experience higher incidence of and mortality from breast cancer than their heterosexual counterparts, but that they also likely experience breast cancer differently from heterosexual women given the context of homophobia and heterosexism.

Data were collected from the lesbian-specific discussion forum found on breastcancer.org. Breastcancer.org is a large nonprofit organization whose mission is to provide the latest reliable information about breast cancer, including information about symptoms, diagnosis, treatment, and treatment side effects. The site also hosts discussion boards, blogs, and chat rooms. Currently there are over 141,000 members. Wandrey and Mosack transferred data into NVivo 10 software and analyzed the data using inductive thematic analysis. In total, the researchers analyzed 173 discussion boards that ranged from 1 to 748 posts each.

The analysis revealed themes related to the unique experiences and social support needs of lesbian breast cancer patients. These themes included having fears of being falsely identified as transgender, experiencing the breast cancer journey as an identity management crisis (i.e., not being able to “hide” one’s sexuality from health care providers), having concerns that one’s partner will not be treated as a family member, feeling as though one’s identity is being invalidated in medical contexts and support groups (i.e., receiving medical information and support that is clearly heteronormative or makes assumptions that the breast cancer patient is heterosexual), feeling as though support programs were designed for feminine women only, and desiring to talk with other lesbians with breast cancer.

These themes suggest that lesbians likely face unique challenges during their breast cancer journeys that nonlesbian women do not. Therefore, future research should focus on developing targeted support interventions that address this group’s unique needs.

You can find more information about the Patient Advocacy and Research Lab directed by Katie E. Mosack at the University of Wisconsin–Milwaukee on the lab’s website.

 -Rachael Wandrey
University of Wisconsin–Milwaukee