Women accessing HIV care services in the UK report being told to use separate cutlery, being refused help to shower, and having visitors being told by care workers not to associate with them.
“We're worried about care homes for people with our disability. In other words they will mistreat you.” Workshop participant
As life expectancy grows, more of us can anticipate needing some kind of care in our older age. Worry over such potential future care is not uncommon. This can be fears generated by terrible stories in the media about poor treatment in residential care homes. Or worry over burdening family and friends. Concern over the costs of care and how they might be met loom large. Some though face additional cause for concern, particularly those living with stigmatised conditions such as HIV. In recent years, increasing evidence has emerged both of discriminatory treatment of people living with HIV in residential or domiciliary care, and of the fears that many people living with HIV have over facing this in their future.
As huge advances have been made in HIV treatment and care, people living with HIV can now expect a normal life expectancy. Due to this, the population of older people living with HIV is growing, with one in three people accessing HIV care services in 2015 aged over 50, 29.960 people in total. This is also driven by increasing rates of diagnosis of HIV amongst older people: in 2015, 17% of new diagnoses were amongst people aged over 50.
Recent research by the HIV charity THT, with people living with HIV over the age of 50, found that 82% of respondents were concerned about being able to access adequate social care as they grew older, and 88% had not made financial plans to meet their care needs. This lack of financial preparation was rooted in high rates of poverty experienced by older people with HIV, with 58% of the THT survey respondents living on or below the poverty line. In addition, people taking part in the survey reported poor experiences with social care where they were already accessing it, including having their HIV status revealed to friends and family without their consent.
The National AIDS Trust published guidance on HIV for care providers in 2015, to address knowledge gaps and potential stigma and discrimination amongst care workers and in care settings. The guidance includes experiences shared by people living with HIV and specialist social workers, describing discrimination and broken confidentiality, including people being refused help to shower, being made to use separate cutlery, or having visitors or other residents informed of their HIV status and advised not to visit or associate with them. These experiences reflect those reported in the THT research, and in other studies.
Many people living with HIV will be familiar with such experiences, and know or know of people who have faced stigma and discrimination in care settings. In my own research, exploring the experiences of ageing with HIV for women in London, with a focus on health and social care needs, such concerns have been shared repeatedly by older women living with HIV.
Women make up almost a third of people living with HIV in the UK, yet are often missing from research and under-represented in policy. In terms of ageing, women face specific gendered experiences and challenges, including biological issues like menopause and loss of bone density and social experiences such as providing care for others. Women also have significant concerns around care and care homes, which are sometimes underrepresented in discussions about care challenges for older people with HIV. In my study, women have reported a range of worries, in addition to concerns about discrimination, including the fear of navigating a care system without children or other family members to act as advocates, and about losing the ability to maintain confidentiality and control disclosure of their HIV status to those close to them. The following are quotes from older women living with HIV taking part in either workshops or a participatory literature review as part of my research, and illustrate the range of concerns that women have.
For older women living with HIV who do not have children, or have children that live elsewhere, the prospect of entering care without family to advocate for their needs and ensure they receive good treatment is a source of real worry. In many cases, this is compounded for women who have experiences in navigating the care system on behalf of others, with women I spoke to who have parents in care describing how they felt they played a significant role in ensuring their parent(s) was safe and well-cared for, and feared having no-one to play that role for them:
“…if that plays out as dementia I feel very fearful of how that scenario is going to be without a family to sort of advocate on my behalf.”
“I would be concerned because I've been directly you know looking after my parents and facilitating their care in both a nursing home last year and now a residential care home and I can just see the vulnerabilities once you're in the care system, in an institution, it's really difficult to negotiate anything for yourself and you really are at the mercy, you know, if you've got nobody keeping an eye on things, you just have to hope that it goes alright”
For others, their fears were shaped or increased by the experiences of friends or others in their networks, who had experienced discrimination, from poor care to disclosure of HIV status:
“… also a concern because some of the carers would gossip about other patients so yeah there was a possibility that they were gossiping about her to other patients.”
“Again I'm going to give an example because I do peer support. There is someone who lives with HIV and she's partially blind and she has been allocated carers. They come to her for her daily needs, personal care. This still happens, they disclosed her status.”
Some women described fears over losing the ability to manage their own medication and clinic appointments, and becoming dependent on others, which would necessitate others knowing their HIV status, and potentially lead to discriminatory treatment:
“…I always think of the time when I'll start losing my senses, not being able to do things for myself, that alone kills me. I personally, I would say, if I had to go, I don't want to get to that age where someone will have to give me my medication… I mean because of the stigma.”
Overall, when women described their future care needs and how they might be met, they described fear and worry, over the treatment and standard of care they could expect to receive:
“… you know my, my most fear is getting old and being put up in a home where people are so ignorant and they're going to treat me, and they can show my files to each other, and gossiping about me. I have nightmares, I have nightmares about this....”
To alleviate this anxiety, it is essential that training in HIV is implemented as a requirement for all care providers, and that care homes and other facilities are supported to ensure they provide a safe and non-discriminatory setting for people living with HIV. A number of women in my study also suggested the need for care system navigators and advocates for people living with HIV, who could speak up on their behalf and had the training and knowledge to support people living with HIV to access high quality care and to solve challenges where they emerge. Beyond this, HIV stigma is a social issue that needs to be addressed across society. HIV specific support services must also be protected and supported, yet just this past week, it was revealed by a Freedom of Information request by the National AIDS Trust that such services have received a 28% funding cut between 2015/16 and 2016/17. This must be reversed to ensure that to ensure that people living and ageing with HIV have access to the specialist support and care that they need. The population of older people living with HIV will continue to grow, and urgent action, resources and attention is needed to ensure they are able to access quality, non-discriminatory and comprehensive care and support.
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