Experiences of women living with HIV during COVID-19 Pandemic

To capture a gendered response during COVID-19, Sophia Forum developed a short survey sent out via social media channels. We received 75 responses in 3 days. A brief executive summary of results is shared below:

  • Over half of the respondents were from a BAME background, with 43% identifying as White British.
  • 28% were Black African, 11% Black British, 7% Black Caribbean and 1% mixed ethnicity.

The main concern for most of the respondents was the impact of the pandemic on their mental health, with 45% citing increased anxiety/or depression; 8% stated their main concern had been feeling increasingly isolated or afraid; and 20% said that since lock down, their mental health had prevented them from accessing a service.

  • 57% of BAME respondents said their primary concern was mental health compared to 35% of white respondents.
  • 20% of BAME respondents said their primary concern was physical health compared with 13% white respondents.
  • 14% of BAME respondents said their primary concern was loss of employment, or having been furloughed, compared with 10% of white respondents.

In addition to mental health concerns, a larger proportion of BAME women stated that key factors for not accessing services were linked to their experiences and responsibilities with family and/or children – 20% of BAME respondents compared with 3% white respondents.

BAME women also reported increased isolation due to being a single parent or commented that they had experienced a ‘lack of support to manage family issues.’

Access to HIV treatment, care and support services

45% or respondents said they had trouble accessing HIV care during the lock down period, primary issues being cancelled appointments and consultations, cancelled blood tests and a lack of access to GPs and consultants. One respondent stated other vital healthcare appointments had been cancelled. Not seeing medical professionals face to face was also a concern.

There was, however, positive feedback regarding the supply of medication, with respondents saying that it had been delivered promptly at the start of the lockdown to prevent running out during this period.

A key theme was the pressure of having all family members self isolating together, or having to care for relatives, with elderly parents and children being the most mentioned. A particular problem was being unable to help with children’s school work due to not having access to electronic equipment. The issue of digital and data poverty has been raised right across the sector for people living with HIV, with it also causing further enforced isolation from usual social support spaces.

Menopause also featured in women’s responses, with reported stock-outs of Hormone Replacement Therapy (HRT) patches, resulting in a change of HRT and subsequent new side effects to manage. Trans respondents spoke of reducing their hormone treatment for fear of running out, resulting in a subsequent impact on their mental health.

Priorities for the government around HIV as we start to ease COVID-19 related social distancing measures

Significant concern was expressed that the COVID-19 model of remote access could potentially be adopted on a longer term basis, as this was considered to be detrimental to the delivery of care to patients. Face to face consultation should remain a fundamental part of service delivery.

Re-opening of sexual health clinics to support women and girls experiencing domestic/gender based violence should be a priority to lift some of the current burden from third sector women’s organisations, given the huge increase in domestic homicide and violence during the COVID-19 lockdown.