Background: Women make up a third of the 85,500 people accessing HIV care in the UK in 2015. The STIGMASurveyUK 2015 provides the opportunity to examine the lived experiences of HIV-positive women in the UK.
Methods: The STIGMASurveyUK 2015 was co-designed by people living with HIV (PLHIV), clinicians and researchers. Adults living with HIV in the UK were recruited through community HIV organisations and NHS clinics to complete an online survey.
Descriptive, univariate and multivariate regression analyses were performed.
Results: Among 1576 participants, 378 (24%) were women, of whom 19 (5%) identified as trans. Mean age was 44 (range 19-76 years): 337 (89%) identified as heterosexual, and 269 (71%) as a black, Asian and other ethnic minority (BAME).
58% (146/250) of BAME women reported activity in a faith group in the last year compared to 14% (15/106) white British/Irish women (p< 0.001); 22% (48/218) of women reported becoming more active in their faith group since diagnosis compared to 12% (47/407) of men (p=0.001).
In the past 12 months 28% (106/372) of women reported feeling blame towards others in relation to their HIV status compared to 21% of men (245/1164, p=0.001). Fewer women reported experiencing rejection by a sexual partner (18% vs 33% of men, p< 0.001). More transwomen reported worrying about verbal harassment (50%, 9/18 vs 21%, 74/346) and experienced exclusion from family gatherings (39%, 7/18 vs 17%, 60/342) than other women.
In primary healthcare settings, women were more likely to report low control over disclosure of their status (aOR 1.65, CI 1.05, 2.59) and little support following disclosure (aOR 1.99, CI 1.23, 3.21) compared to men after adjustment for demographics. 53% (8/15) of transwomen reported being treated differently to other patients at their GP (53%, 8/15) cf 15% (49/318) of other women; almost half (7/16) reported hearing negative comments from a healthcare worker about their HIV status or PLHIV compared to 17% (54/324) of other women.
Conclusions: Women feel less support in healthcare settings with regard to their HIV, and transwomen experience disproportionate levels of discrimination. Interventions to increase sensitivity and support within the healthcare and faith settings are advisable.