Women who received a diagnosis of HIV in midlife in Sussex
Research type
Research Study
Full title
Health Services: The views of people who identify as women, non-binary, and trans-masculine, who were diagnosed with HIV in midlife in Sussex
IRAS ID
355003
Contact name
Kiersten Simmons
Contact email
Sponsor organisation
Clinical Research Facility, University Hospitals Sussex NHS Foundation Trus
Duration of Study in the UK
1 years, 0 months, 1 days
Research summary
Research Summary:
Rates of HIV and Sexually Transmitted Infections (STIs) are increasing among people who identify as women, non-binary, and trans-masculine, and who are aged 40-65 years. Health services, including sexual health and wellbeing services, largely aimed at young people and men who have sex with men, have not evolved to meet the needs of the changing sociocultural norms of women and people who identify as non-binary and trans masculine, who are aged 40-65 years. The aim of this study is to explore from the perspectives of people who identify as women, non-binary, and trans-masculine, who were diagnosed with HIV when aged 40-65 years in the last decade in Sussex, the barriers and enablers to accessing HIV/STI testing in Sussex health services, including sexual health and sexual wellbeing services, and to co-produce with them HIV/ STI testing and information health promotional material. In-depth interviews, lasting approximately one hour, which will be conducted face-to-face in confidential spaces such as community centre rooms (with the option of Microsoft Teams virtual interviews), will be conducted with approximately fifteen people who identify as women, non-binary, or trans-masculine, in order to identify themes that are common around how to improve access to HIV/ STI testing within health services, including sexual health services. All interviewees will be invited to comment on the draft thematic analysis, prior to finalisation. All interviewees will then be invited to participate in an optional face-to-face co-production workshop, lasting approximately four hours, with a local artist, in a confidential community-centre space, in order to produce images and wording for posters/ pamphlets/ social media to inform and encourage people aged 40-65 years who identify as women, non-binary, and trans masculine, to access HIV/ STI testing services. The study has received financial funding from the British HIV Association.
Lay summary of study results:
Midlife, the stage between the ages of 40-65 years, is an opportune time to improve the trajectory of health into older life. A thematic analysis was conducted on interviews with sixteen women diagnosed with HIV when aged 40-65 years to identify the enablers and barriers that affected access to HIV testing and prevention methods (objective one), and the sociocultural challenges of living with HIV including support opportunities for HIV management services (objective two). Four main themes emerged for objective one, (the enablers and barriers to HIV testing and prevention methods): lack of self-prioritisation and lack of autonomy; poor HIV health literacy but learned resilience (in persistently seeking
2
health care); stigma among women about using sexual health services, and missed opportunities for diagnosis by Health Care Providers (HCPs). Four main interlinked themes, two of which overlapped with the findings for objective one, emerged for objective two (the sociocultural challenges of living with HIV including support opportunities for HIV management services): an end to sexual intimacy; HIV health literacy and HIV related anxieties but learned resilience (better able to advocate for other care); stigma about living with HIV, and poor knowledge and attitudes among HCPs. Due to high levels of stigma, quotes from composite narratives (hypothetical stories representing an amalgam of participants’ experiences) were utilised to illustrate themes. There are imperative moral and public health needs to improve HIV prevention and management support for peri/menopausal women aged 40-65 years in the UK. The implementation and evaluation of measures suggested by participants, such as tailored health campaigns for women at risk of, and living with HIV and their health professionals; women-only services, and trauma-informed care for an often-vulnerable population undergoing hormonal and social transitions, is required.REC name
Yorkshire & The Humber - South Yorkshire Research Ethics Committee
REC reference
25/YH/0061
Date of REC Opinion
15 May 2025
REC opinion
Further Information Favourable Opinion