What women want: social characteristics, gender-based violence and social support preferences in a cohort of women living with HIV

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A total of 229 women attend Chalmers Centre (a city-centre integrated sexual health centre in Edinburgh, Scotland) for their HIV care and treatment. Local third-sector agencies provide peer support, but anecdotally, it is not well utilised and some demographic groups are under-represented. The aim of this study was to gain better understanding of the background social characteristics of these women, to ascertain what issues they are affected by, and to better identify what support is required and how it should be provided/facilitated. An anonymous self-completion questionnaire was developed, and all women attending HIV clinics between July and November 2015 were given the opportunity to participate. Additional data were accessed from the National Sexual Health database on cohort size and gender-based violence enquiries. Forty-four women living with HIV completed the questionnaire. 25% are unemployed. 84.6% had a combined household income of less than £30,000 per annum. 16.7% do not know anyone else, and 59.5% know only one other person, who is living with HIV. 32.6% would like to meet other/more women living with HIV, and 25.5% were unsure if they did or not. Of those who would, 42.9% would prefer a one-to-one setting, 42.9% would prefer a group setting, and 14.3% did not mind. 64.3% would prefer to meet off NHS premises. 26.8% were interested in discussion groups on women’s issues, and 31.7% were unsure. The most popular suggestions for discussion group topics were stress/anxiety (nine women), HIV disclosure (eight women), diet and nutrition (seven women), and pregnancy and childbirth (six women). 26.8% were interested in attending a “women clinic” staffed by female staff, the same number were unsure if they would utilise this service or not. 50% of women had, at some point, experienced gender-based violence, 13.5% were currently experiencing gender-based violence, and four of these women have children living with them. From National Sexual Health records, only 15.7% of the cohort had ever been asked about gender-based violence. Respondents were demographically representative of our whole cohort. 75% are in employment but it appears that the majority of these women are likely to be earning lower than the national average income. To improve holistic support for these women and facilitate peer support, we need to be flexible in our approach. Gender-based violence appears to be disproportionately affecting women living with HIV in Lothian and, as a team, we are failing to routinely enquire about it. Robust referral/signposting pathways should be developed for women after gender-based violence disclosure.

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