Peer support

Social support from peers living with HIV is of a different nature to the support of people who do not have the lived experience of growing older with the virus, according to a recent sociological study.

The researchers talked to people over the age of 50, living with HIV in the UK. The people they talked to said that although they valued the support of their family and friends who don’t have HIV, they also needed to be in contact with people who are ‘in the same boat’ and who really ‘know what it’s like to live with HIV’. Here are two quotes from the interviews.

“It doesn’t mean relationships with non-HIV friends are any less strong, because they’re not... They’re all supportive, but the support from people who are HIV is usually a little more on the nose, a bit more aligned... If someone’s going through or has already gone through the same thing as you, then you’re going to attune and have a better empathy for those people, and vice versa.”

“I think to actually be able to empathise properly, you need to be in the same boat. It’s very easy to say ‘Well, you know, it must be difficult to live with it’ or ‘It must be easy to live with it’; if you aren’t in that situation, then it’s not so easy.”

While many of the gay men interviewed were able to get support in an informal way from friends living with HIV, heterosexual men and women were less likely to have known other people living openly with HIV before their diagnosis. They had to reach out beyond their friendship and social networks to support groups and HIV organisations.

However, there have been dramatic cuts to funding for HIV-specific services in the UK, due both to austerity and to a policy that generic services should be able to deal with the needs of people living with HIV – so it is likely to be increasingly hard for people to find and access HIV support groups.

To find out more, read ‘Connecting with others’ in NAM’s booklet ‘HIV, stigma & discrimination’.

Looking after your own mental health

The researchers who conducted the study on peer support – described above – also looked at the different ways in which older people living with HIV looked after their own mental health. The interviewees described a range of strategies to maintain or improve their mental health and emotional wellbeing.

While all participants were over the age of 50 and the oldest was aged 87, half were in their early or mid-fifties and half had been living with HIV for ten years or less.

As already described, having contact with other people living with HIV was very important to many. Some volunteered, either for HIV organisations or for other charities. They said that volunteering helped keep them active, physically and mentally. One man said:

“I can’t stay at home not doing anything… if I stay at home, that could lead to depression for me, just sitting down”.

Many interviewees made a point of focusing on positive aspects of their lives. Some people described simple pleasures like going for a walk beside the river, while others talked about actively valuing and pursuing relationships and activities that improved wellbeing.

“I can still function, I can think, I can create, I can take photos, I can go out for dinner, I can cook dinner – I can do what normal, or non-HIV people, do. We, apart from pills, are non-HIV people”.

Several also talked about the benefit they got from mental health services:

“I’m a bit mixed up and sometimes I just find it useful talking to a third person who is completely removed from my personal life; who isn’t trying to go, no of course you’ll be all right, because they’re my friend or my family.” 

To find out more, read ‘Looking after your own emotional and mental health’ in NAM’s booklet ‘HIV, mental health & emotional wellbeing’.

Summer camp for young people living with HIV

Every year the Children’s HIV Association (CHIVA) organises a support camp for 12 to 16 year olds living with HIV in the UK. The aims of the camp are to address isolation and foster friendships between the young people, increase their knowledge and understanding of living with HIV, and improve confidence and self-esteem. Activities include creative workshops, sports, role play and advice on disclosure, and sessions on HIV transmission, sexual health and rights. The team running the camp included social workers, nurses, volunteers aged 18 to 24 who are living with HIV (‘camp leaders’) and older volunteers (‘key workers’).

An evaluation showed that six months after the camp, the young people who took part had improved knowledge of HIV and more positive feelings about discussing their HIV status.

In-depth interviews showed peer support was an important part of the camp. Many of the young people talked about the benefit of meeting new people who were also living with HIV. A 12-year-old girl said:

“My friends were all in the corridor and we would just stay up late and sit in the hallway talking and we could talk about anything. We could be talking about the past and all the stuff that we wouldn't talk to our normal friends about.”

For many, the camp helped them normalise living with HIV, as this 13-year-old girl described:

“I don't see it as such a negative thing, like I don't see it as a big thing anymore. Now I feel like I'm OK with what I have, you have to live with it in order to be healthy and… I'm just taking [my medication] consistently now.”

To find out more about the summer camp, visit the CHIVA website. For more information on children and young people, read NAM’s booklet ‘HIV & children’.

Heart disease

Doctors should treat having HIV as a distinct risk factor for heart disease, strokes and other forms of cardiovascular disease, some experts believe. A recent study found that people living with HIV were twice as likely to develop cardiovascular disease as other people. This study found that in a group of 10,000 people living with HIV, 62 could be expected to develop cardiovascular disease within the next year and 14 to die from it.

At the moment, GPs and other health professionals estimate people’s risk of heart disease and strokes, taking into account factors including age, gender, smoking, cholesterol, blood pressure and diabetes. These approaches have tended to underestimate cardiovascular risk in people living with HIV.

The experts say that HIV should now be considered, alongside smoking and diabetes, as a risk factor.

The new study found that HIV is the cause of 1% of all cases of cardiovascular disease that occur, globally. Most of the cases actually occur in African and Asian countries that are hard hit by both HIV and cardiovascular disease. In South Africa, Swaziland, Botswana and Lesotho, at least 15% of cases of cardiovascular disease are thought to be due to HIV.

To find out more, read NAM’s factsheets ‘The heart’ and ‘Stroke and HIV’.