Analysis

Training needed to tackle stigma around HIV, charity urges

Report reveals examples of poor care for older people with HIV

A report from the Terrence Higgins Trust reveals older people with HIV are being stigmatised by some health and social care staff with poor knowledge of their situation


A report has revealed that HIV-positive older people living in
care homes are experiencing poor care. Picture: iStock

In one care home, an older woman with HIV was examined by staff wearing double gloves, while items she had touched were swiftly wiped down. In Wales, a man with HIV was refused a place by three care homes.  

These examples of poor knowledge and stigmatisation at the hands of health and social care staff are part of a report into the experiences of older people with HIV.

The report from the Terrence Higgins Trust, called Unchartered Territory, calls for better training for health and social care staff, including GPs, to improve the care of the growing number of older people with HIV.

Findings ‘unacceptable’

The charity says that one in three people with HIV is aged over 50 – almost 30,000 people – but their voice is often unheard. More than 1,000 people aged over 50 were diagnosed with the condition in 2015.

30,000 

the number of people aged over 50 living with HIV in the UK.

The study involved more than 300 people, and found that one third of respondents were socially isolated, while 82% experienced moderate to high levels of loneliness. Almost six out of ten (58%) were living on or below the poverty line, and many feared how they would be looked after as they grew older.

The experience of older people with HIV in care homes is flagged up as being particularly poor, the report finds.

‘This is unacceptable. People living with HIV in care homes should not be treated any differently from their peers,’ the report says. 

Confidence and competence 

Terrence Higgins Trust chief executive Ian Green says the report highlights the need for more training to challenge the stigma around HIV.

‘It is about all health and social care staff having the confidence and competence to respond appropriately to older people presenting with HIV, and understand some of the challenges for these individuals,’ he says.

He also urges nursing staff to consider the difficult journey that many older people may have gone through. With treatment revolutionising the outlook for patients over the past 20 years, the effectiveness of antiretroviral therapy means many people with HIV will live a near-normal life span.

‘People living with HIV, particularly those infected in the 1980s and 1990s, have gone through emotional turmoil,’ he says.

Education ‘patchy’

‘At the time of their diagnosis they assumed they would get sick and die, and they watched people get sick and die. And then somewhere in the mid-1990s when treatment came in – which was then pretty grim – there was a change, and then there was another shift to a normal life span with effective treatment. I would encourage all nursing staff to understand that and be supportive of people growing older with HIV.’ 

University of Central Lancashire senior lecturer in the school of community health and midwifery James Meek says one problem is that teaching on HIV is not part of the pre-registration nursing curriculum.  

58% 

of people aged over 50 with HIV are living on or below the poverty line, according to the Terrence Higgins Trust poll.

Students in areas with higher numbers of people living with HIV, such as Manchester, London and Brighton, are more likely to be taught by staff with an understanding of the condition, he says, but this is often not the case elsewhere, and the opportunity to access education is patchy.

‘As the number of patients with HIV grows and patients are living longer, more and more nursing staff are going to be exposed to HIV patients in practice, so staff do need some education,’ he says.

Long-term management

Another issue for older people is that HIV care is often specialised and provided separately to other aspects of care, which means integrating care smoothly is difficult. 

‘HIV is a long-term condition and needs to be managed in a similar way to other long-term conditions, such as asthma and diabetes, where we see someone acutely ill in a specialist service and then managed by GPs and practice nurses,’ Mr Meek says.

Those in the study had three times as many long-term health conditions as the rest of the population. The report says that coordinated, long-term condition management, with support to self-manage, is essential for people living with HIV aged 50 and over.

Manchester Metropolitan University senior lecturer and advanced nurse practitioner Michelle Croston says the lack of understanding around HIV means that older patients are often bounced back to her by other healthcare professionals, who assume that their problems are HIV-related. 

82% 

of those questioned experienced high or moderate levels of loneliness.

‘They are not getting the integrated care they should be getting,’ Ms Croston, who is also chair of the National HIV Nurses Association, says. ‘When they see other healthcare professionals, there can be a lack of understanding which compromises their safety, such as on drug-to-drug interactions.’

Collaborative care

A 59-year-old woman with HIV told the study that this had been a problem for her. ‘Every health problem you go to your doctor about, they always say, "oh it’s because you’re HIV-positive", or, "oh it’s because of your age". But no one can ever tell you what to expect because of these two things,’ she said.

The lack of support for older people with HIV was debated by nurses at the RCN congress in Liverpool in 2014.

RCN public health forum chair and clinical director at Sussex Beacon Jason Warriner said that, along with basic knowledge of HIV, nurses needed to focus on patient-centred care.

‘The first thing is talk to your patient, and if there is a team of HIV specialists involved in their care, have a conversation with them, work together and collaborate and take a holistic approach,’ he said. 

Experiences of people with HIV aged over 50:

‘It just gets so confusing. There are so many appointments and I have to go to four different hospitals. Once, I remembered the correct appointment time but went to the wrong hospital.’ Woman, 52.

‘So there’s the aspect of becoming more and more socially isolated – that’s the only word you can use. I used to spend a lot more time on my hobbies but I lost interest. Just let the depression come through, you know. It’s all part of that.’ Man, 58.

‘My GP knows very little, though the nurses seem to understand more. I used to be a doctor so I find out what I can myself. The GP is no help.’ Man, 54.

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