Many people with HIV feel lonely but few get help with it

A large survey of people attending HIV clinics in England found that most people are very happy with their HIV services, but there is a lot of unmet need for social and welfare services, in particular support to alleviate loneliness and isolation.

Over 4000 people living with HIV took part. This was a representative sample of people living with HIV, with a very similar profile to the larger population of people who use HIV clinics.

People were asked about their need for a range of services over the previous year. For each one, they were given four options: ‘I did not need this’, ‘I have received this’, ‘I needed this but could not get it’ and ‘I needed this but did not try to get it.’

The greatest unmet needs were for social and welfare services. Just under half of respondents (45%) needed these services, but only 38% of those with needs received services, leaving 62% of these needs unmet.

One in five respondents wanted support to combat loneliness and isolation but three-quarters did not receive any services. Many people wanted peer support or to have opportunities to meet other people living with HIV, but not all had been able to get this. Other unmet social and welfare needs included career skills and training, childcare services, financial advice, employment advice and legal advice.

Lots of people also had needs for a range of health services, such as help to manage stress, counselling, weight management and advice about sex, but about half of these needs were unmet. For those people who wanted support to deal with chemsex, there was a particularly high level of unmet need.

Most respondents (83%) said they needed HIV-related services and most people (80%) were able to access services, but this still leaves 20% with some unmet needs. The most commonly expressed HIV needs were for HIV treatment advice, information about living with HIV and adherence support.

Satisfaction with HIV clinics was extremely high – 94% thought they were involved in decisions, 96% said they had enough time at appointments and 97% said staff listened to them.

The researchers also assessed participants’ health-related quality of life. The most challenging areas affecting people’s quality of life were anxiety, depression, pain and discomfort. Some people also had problems in relation to their ability to engage with usual activities, to get around and to look after themselves.

Whereas the overall quality of life score for the general population is 0.86, the average score for people with HIV was lower at 0.60. (Possible scores range between 0 and 1.) Among people living with HIV, scores were similar between men and women.

Particularly low scores were recorded in people who had acquired HIV through injecting drug use (0.31), people infected through blood products (0.48) and trans and non-binary people (0.50).

The best scores were in adolescents and young adults who were born with HIV (0.83).

For more information, read 'Connecting with others' in NAM's booklet 'HIV, stigma & discrimination'.

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