An HIV diagnosis for many women can have a significant impact on sex, intimacy, and relationships. While treatment today can give women with HIV a near normal life expectancy and reduce the chance of transmission to partners to almost zero, HIV remains heavily stigmatized and criminalized. Little research has been done to understand the sexual and relational lives of women living with HIV.
Through her latest work, Allison Carter, former Coordinator and current PhD Student and Research Assistant for CHIWOS (the Canadian HIV Women’s Sexual and Reproductive Health Cohort Study, a collaboration with the BC Centre for Excellence in HIV/AIDS, Simon Fraser University, Women’s College Research Institute, and McGill University Health Centre), looks to broaden the understanding of sexual and intimate relationships among women living with HIV.
Allison is traveling to Durban, South Africa for the 2016 International AIDS Society conference where her research entitled “A Latent class of intimate relationships among women living with HIV enrolled in Canada’s largest multi-site community-based research study” will be showcased in an oral poster discussion session. Unlike traditional studies of HIV-positive women that focus on sexual risk behaviours, this study applies a more positive and holistic lens to women’s sexuality and lives. Using a novel statistical method called latent class analysis, Allison developed a typology of relationships using multiple measures of relationship structure and quality, and examined associations with love/affection and psychological characteristics.
Nearly half of the women reported not being in any kind of relationship, and women who were older and living with depression were more likely to be single. The study also found more than one-fifth of Canadian women living with HIV are in long-term happy and loving sexually active relationships characterized by high physical intimacy and high emotional closeness. A more positive, comprehensive, and strength-based approach to supporting women’s entire well being, including sexual and relational well being, is critical to advancing women’s health and rights.
The CHIWOS study is a peer-led community-based research study following 1,425 women over the age of 16 living with HIV in British Columbia, Ontario, and Québec.
The BC-CfE spoke with Allison about her work.
BC-CfE: Who took part in this study and what methods did you use to collect the data?
Allison Carter: CHIWOS is Canada’s largest community-based research study conducted by, with, and for women living with HIV: 1,425 women from British Columbia, Ontario, or Quebec took part in this study. The women were incredibly diverse, differing in gender, age, ethnicity, sexual orientation, time living with HIV, and other important identities. All women completed detailed online questionnaires administered by Peer Research Associates or PRAs; these are women who are themselves living with HIV and who bring important lived and professional experience to the research process. Through these questionnaires, we were able to document and learn about various aspects of women’s lives including their relationships and sexuality, which are often neglected in research and practice.
BC-CfE: How do you feel this study sets itself apart from more traditional studies that look at Women and HIV ?
AC: Well, I may be biased, but CHIWOS as a whole is making incredible strides when it comes to doing researching with women, not just on them. While our work is far from perfect, recognizing women living with HIV as the experts of their own lives and engaging them as leaders in the research process is truly what I think sets CHIWOS apart. When it comes to this analysis in particular, there are two things I’m really proud of. First, we take a sex-positive, feminist perspective to the study of women’s relationships and lives, focusing on the sexual and intimate rewards women with HIV enjoy, rather than the “risks” they should avoid. And second, the idea for this project came from community.
BC-CfE: What do you feel is the most important take-away from this study?
AC: I would say the most important finding is that nearly half of women with HIV in Canada are not in any kind of romantic relationship, which is higher than general population estimates. Our findings point to older age and depression as factors associated with this outcome, but we suspect women may also be actively choosing to avoid relationships because of HIV-related stigma and discrimination and fear of disclosure, rejection, and transmission. We are conducting additional follow-up analyses to look more closely at this. Having said that, if I can offer one more important take-away, it would be that many women with HIV do find love and intimacy; in fact, one-fifth of our cohort are in happy, loving, sexually active long-term relationships. And most of these relationships (71%) are with partners who are HIV-negative. These are stats worth sharing, and not just with women but also people in the general public whom these women are likely to date!
BC-CfE: Was there anything that came out of this study you didn’t expect?
AC: I wouldn’t say this was unexpected, but I did gain a new appreciation for the diversity that exists in relationships. Often, in HIV research, we classify people’s relationships into simple, binary categories like regular versus casual, HIV seroconcordant versus serodiscordant, or married versus single. I think this has a lot to do with the “risk” paradigm that predominates within sexual health research and care. But, in reality, we know relationships are so much more personal, deep, intimate, beautiful, vulnerable, emotional, confusing, interesting, and exciting! They don’t have an “it’s complicated” option on Facebook for nothing! And we see this in our study. While some women were in committed, sexually active relationships complete with emotional closeness and physical touch, others were in committed, sexually active relationships that women reported were unaffectionate and unhappy. Still, other women were married but not having sex (yet still receiving love and affection in other ways), and some pursued and enjoyed sexual pleasure in casual dating partnerships of shorter length. And all groups showed interesting patterns when it came to equity in the relationship and couple HIV-serostatus. So, while not entirely unexpected, it was really interesting to see the variety of relationships women are having, all of which are legitimate.
BC-CfE: How can information from this study be used to help women with HIV?
AC: I hope the findings from this study can be useful to sex researchers, counselors, and clinicians towards better understanding and responding to the diversity of women’s intimate relationships and lives. Providers should be talking openly and non-judgmentally with women about their sexual health needs and concerns, and not just when it comes to safe sex but also other sexual matters like difficulties with relationships or concerns about sexual desire, arousal, and orgasm. While not nearly as interesting as Fifty Shades, I also hope women themselves enjoy reading this research and can take something positive from it. If I could channel some wisdom from our PRAs, I would say to women: As much as society may want you to believe otherwise, you are not diseased, dysfunctional, or a “risk” to others. You are beautiful. You are loveable. You matter. And you deserve to enjoy the same sexual pleasures and rights as anyone else, however that may look for you. It’s on us, as a society, to help make that happen and it starts with ending stigma against HIV.
Check out Allison’s research poster at https://bit.ly/29RLQvS.