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Many Women Living With HIV Fear Abuse After Disclosure, Lack Access and Support

By Ikè Nwankpa

November 19, 2013

Women living with HIV (WLHIV) have unmet needs that can be addressed outside of clinical settings, while more than half of WLHIV are willing to be involved in the planning and development of services, according to United Kingdom study results presented at EACS 2013, in Brussels, Belgium.

The study, led by Adele Wolujewicz, aimed to identify weaknesses in the care of WLHIV. It initially surveyed three HIV-infected women and a nurse who specializes in HIV treatment. The study found that, much like HIV-uninfected women, WLHIV have sexual relationships, but often face unusual concerns regarding dating and safety, concerns they were not usually willing to disclose.

Taking their initial data, the focus group was empowered to launch a one-day, women-only event in the hopes of bridging this gap. Sixty-seven WLHIV attended the event; 40% were black or African and 32% were white, while 23% were bisexual. They were given questionnaire surveys before and after the event, with 29 completing the survey before and 43 after the event. The survey asked questions concerning how they felt about sexual relationships, their safe sex practices, experiences with abuse, and the impact their diagnoses may have had on their lives.

On the topic of sex, 48% of the women said they did not feel confident negotiating safe sex with their partners. This can be problematic as consistent condom usage remains one of the most easy and effective methods to prevent transmitting HIV among mixed-status couples.

An overlapping 48% were uncertain about where to access PEP (post-exposure prophylaxis), STI (sexually transmitted infection) screening or emergency contraceptives.

Regarding their HIV statuses, 48% of the women reported having trouble disclosing their status to a partner. Up to 57% were only willing to discuss it just before intercourse. Sadly, 45% of the women reported at least one incident of physical violence or abuse after disclosing their HIV status, with 65% wanting more support when it came to disclosure.

Interestingly, 43% of the women believed that their viral load had no bearing on their sex lives, though 69% also reported having changed their sexual behavior after diagnosis. One woman claimed not to disclose her status to partners since her viral load had become undetectable.

The results highlighted the necessity of getting WLHIV involved in the development of services for them. Before the start of the program, only 43% of attendees were willing to answer questionnaires regarding their relationships. Following active engagement, the number jumped to 64%, easily more than half the total number of attendees, which the researchers conclude, "demonstrate the willingness of women to be involved in service development." Further analysis into how to address the unmet needs of women outside of clinical settings is needed.

Ikè Nwankpa is a writer based in New York.

Follow Ikè on Twitter: @ikenwan.

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