Google+ Badge

Thursday, December 10, 2015

Why should we care about sexual minority women with breast cancer?



I have said this in previous blog posts, and it bears repeating: when an entire body of cancer-related literature basically ignores a particular community of women, we all remain ignorant of the experiences of that community, even those of us who are a member of it.
To try to shed some light on the breast cancer experiences of sexual and gender minority women (lesbians, bisexual women, queer women, women who have sex with women, gender queer and trans women - MTF and FTM, intersex people), I am conducting a study of social support and sexual and gender minority (SGM) women with breast cancer.  So far, recruitment has been fairly slow, as this is a difficult population to find. So to directly access a larger number of women and improve response rates, I am using crowd-funding to raise money to recruit potential subjects through the Susan B. Love Foundation's Army of Women.  Please donate for this important study!
Over a series of blog posts, I am sharing detailed sections from my original research proposal, so that you can see what my thinking was in choosing this topic and what I hope to accomplish with the study.  I hope you find my argument compelling enough to make a donation to my Indiegogo campaign and to share the study link with any women you know who might qualify or know someone who qualifies.  
Today's post is about the background of my study - a discussion of the existing literature on breast cancer and non-heterosexual, non-cisgendered women.  I hope you will read it, and post any questions you have in the comments.

Study Background
The invisibility of sexual minority women in breast cancer literature is incongruent with what researchers have identified as differential levels of breast cancer risk among women based on SGM identity, and a greater risk for fatal breast cancers among SGM women. Based on these greater risks, one would expect to find more representations of the breast cancer and survivorship experiences of SGM women.
This invisibility in the breast cancer literature, combined with experiences of heterosexism and homophobia in health care settings, and barriers to health insurance and access, may contribute to under-utilization of breast cancer screenings by lesbian and bisexual women. Increasing the visibility of breast cancer in the lesbian community, and improving understanding of the experiences of SGM women with breast cancer  could improve utilization of breast cancer screenings and reduce heterosexism and homophobia in health care settings.
Previous studies of lesbian and bisexual women cancer survivors indicates the importance of social support in negotiating the cancer experience, as well as the sense of isolation experienced by SGM women, many who do not personally know other SGM women who have had cancer.  Some studies of female SGM cancer survivors indicate that for sexual minority women, sexual identity is not as important to the cancer experience as one might expect, and female SGM cancer survivors may not be experiencing higher levels of anxiety or depression than heterosexual or traditionally-gendered women.
Other research indicates that older women living with female partners are generally more likely to need some assistance with activities of daily living than those living with men . More specific to cancer survivors, female bisexual survivors are more likely to smoke but less likely to report physical inactivity then female heterosexual cancer survivors, and  lesbian and bisexual female cancer survivors report poorer self-rated health than heterosexual female cancer survivors. Other research has identified perceived discrimination and perceived social support as impacting the quality of life of female sexual minority breast cancer survivors . The diversity of findings from the handful of studies of sexual minority women with breast cancer indicates that additional research is needed to understand the stresses experience by this population, and of the supports needed by, and available to, them as they navigate breast cancer treatment and survival.

Tuesday, December 8, 2015

The costs of invisibility for sexual minority women



When an entire body of cancer-related literature basically ignores a particular community of women, we all remain ignorant of the experiences of that community, even those of us who are a member of it.
I am conducting a study of the social support and sexual and gender minority (SGM) women with breast cancer.  So far, recruitment has been fairly slow, as this is a difficult population to find. So to directly access a larger number of women and improve response rates, I am using crowd-funding to raise money to recruit potential subjects through the Susan B. Love Foundation's Army of Women.
Over a series of blog posts, I will be sharing detailed sections from my original research proposal, so that you can see what my thinking was in choosing this topic and what I hope to accomplish with the study.  I hope you find my argument compelling enough to make a donation to my Indiegogo campaign and to share the study link with any women you know who might qualify or know someone who qualifies.
SGM women are essentially invisible in academic and mainstream breast cancer survivor literature and in breast cancer advocacy movements.  Books written to guide breast cancer survivors through treatment or recovery assume that all women with breast cancer are heterosexual and traditionally gendered. Commonly available breast cancer memoirs are also written by heterosexual women. While SGM women may still find useful information in materials written from and for the female heterosexual perspective, the heterosexism in these written accounts of breast cancer and recovery experiences tells SGM woman that their breast cancer experiences are unimportant. The heterosexism in breast cancer and recovery literature also reflects the heterosexism many SGM women encounter, or expect to encounter, in health care settings. An additional result of this invisibility is that care providers lack a real understanding of how their interactions with SGM women and the different influences in the lives of SGM women function as sources of stress or support for SGM women facing breast cancer.
For SGM women, heterosexist assumptions in the breast cancer literature and in health care settings may serve as sources of stress and as barriers to seeking the help and support they need during one of the most difficult times of their life. Because SGM women with breast cancer may not have access to a community of other SGM women with breast cancer for support, breast cancer can be a stressful and isolating experience. Women may hunger for information from other SGM women who have been through the same experience. As one survivor in the Lesbians and Cancer Project (LBCPT) stated:
I don’t have other lesbians who are survivors around, or I don’t know other lesbians who’ve had breast cancer. And so I haven’t really had a chance to explore other issues that could come up (2004, p. 6).

This study asks if sexual orientation and gender identity are related to stresses and support in the lives of SGM women with breast cancer. This is an exploratory study, using personal stories to learn about the experiences faced by SGM women who have breast cancer. Data is collected using an online survey. The specific aims of this study are to: 1) learn about the breast cancer experiences of SGM women; 2) to explore sources of stress encountered by SGM women facing breast cancer; 3) to explore sources of support available to and needed by SGM women facing breast cancer; and 4) to develop written resources for SGM women facing breast cancer.

Monday, December 7, 2015

Sexual Minority Women with Breast Cancer - How is Our Experience Different, How is it the Same



As my readers already know, I am a lesbian who has had breast cancer twice, and I am also a social science researcher.  After my own breast cancer experiences, I started wondering a) why isn't there more information out there about what going through breast cancer is like for lesbians like me, and for other sexual and gender minority women? and b) what can I do to increase the amount of information that is available for women like me who are facing such a frightening diagnosis and experience?  There are many ways that we could explore the breast cancer diagnosis and treatment experiences of sexual and gender minority women, so I chose to start with a study of stress and social support, with a focus on their experiences in the health care system and the impact that breast cancer has on their bodies and their relationships.  

I am crowd-funding this first study of the experiences of sexual and gender minority women (lesbian, bisexual, transgender) who have had breast cancer.I am collecting the data for this study using an online survey. Potential participants must have had breast cancer at any point in their life, must identify in some way a sexual minority (as a person who is attracted to or has had relationships with other people of the same sex, or who identifies as lesbian, bisexual, or queer) or a gender minority (gender queer or transgender).
 Here's why this study is important:
Sexual minority women are essentially invisible in academic and mainstream breast cancer literature and in breast cancer advocacy movements. While sexual minority women may still find useful information in literature written from and for the female heterosexual perspective, the heterosexism in these written accounts of breast cancer and recovery experiences effectively communicates that the sexual minority woman’s breast cancer experience is unimportant and reflects the heterosexism many sexual minority women encounter in health care settings.
This invisibility in the breast cancer literature, combined with experiences of heterosexism and homophobia in health care settings, and barriers to health insurance and access, may contribute to under-utilization of breast cancer screenings by lesbian and other sexual minority women and may serve as barriers to seeking the help and support they need during one of the most difficult times of their life. Because sexual minority women may not have a community of other sexual minority women with breast cancer around them, breast cancer can be a stressful and isolating experience. An additional result of this invisibility is that care providers lack a real understanding of how their interactions with sexual minority women and the different social, family, and interpersonal influences in the lives of sexual minority women function as sources of stress or support for sexual minority women facing breast cancer.
This study asks if sexual orientation and gender identity are related to stresses and supports in the lives of sexual minority women with breast cancer. This is an exploratory study, using personal accounts to discover the issues and experiences faced by this population. Data is collected using an  electronic survey. The specific aims of this study are to: 1) learn about the breast cancer experiences of sexual minority women; 2) to explore sources of stress encountered by sexual minority women facing breast cancer; 3) to explore sources of support available to and needed by sexual minority women facing breast cancer; and 4) to develop written resources for sexual minority women facing breast cancer.
Based on the limited amount of research on this population, it is clear we need to learn more about the breast cancer experiences of lesbians and other sexual minority women, about the stressors they face during treatment, and about their specific support needs.