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Background: Improvements in survival due to antiretroviral therapy (ART) have led to a shift in the age distribution of people living with HIV, with increasing numbers of women living with HIV (WLWH) reaching menopausal age. We present results from a qualitative study exploring experiences of the menopause among WLWH in the UK.
Methods: In collaboration with an HIV charity and two peer researchers, we conducted three focus group discussions (FGDs) in 2015 with 24 WLWH aged 43-62. All FGDs were transcribed verbatim and analysed thematically in NVivo 10.0. This work is part of the PRIME study, a mixed-methods observational study exploring the impact of the menopause on WLWH''s health and wellbeing.
Results: Women described a lack of prior knowledge, leaving them under-prepared for menopausal symptoms. For women born in Sub-Saharan Africa (n=16), this was exacerbated by cultural taboos around discussing menopause, and loss of kinship networks during migration.
Menopause in the context of HIV brought particular challenges. Participants were concerned that menopause could be precipitated by HIV-infection or ART, whilst some were reluctant to take further medication such as hormone replacement therapy when already on ART. Common symptoms such as hot flushes, mood changes and poor sleep, sometimes impacted on ability to adhere to ART. Many participants did not recognise their menopausal symptoms, instead attributing them to ART side-effects or HIV. Furthermore, they found themselves “going backwards and forwards” between primary healthcare providers (HCPs) and HIV-physicians when seeking advice and clinical care, often leading to frustrating delays.
Participants highlighted the importance of supportive HCPs and accessible information on HIV and the menopause, and the need for ongoing peer-support, many describing their participation in the FGDs, often their first opportunity to discuss menopause with other WLWH, as “empowering”.
Conclusions: This is one of the first qualitative studies to explore experiences of the menopause in WLWH. Participants encountered particular challenges in the recognition and management of the menopause as a result of also being HIV-positive. Increasing awareness among patients and HCPs, developing HIV-specific patient resources, and peer-support networks may help support WLWH at this stage in their lives and limit negative impacts on their HIV care.

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