21st Century HIV Support Needs

posted: 28/05/2009

HIV policy expert Chris Morley investigates what support people living with HIV need, as revealed in Sigma Research’s latest report What do you need?

Some things have changed, but in most areas of life similar proportions of people living with HIV have similar needs for support to 7 or 8 years ago, when the first What do you need survey was done.

About 2000 people completed an online and booklet survey, with 10% living in Northwest England, roughly the same as the region's share of people living with HIV nationally. We appreciate the help of all who completed the survey at our website or by booklet.

The survey looked at HIV medical, social care, support and information needs. It asked about 20 issues - from sex to housing, immigration to discrimination, anxiety and depression to the world of work. It asked if people have problems in these areas. There may be no solution to some problems, but there are potentially dozens of ways to help.

Needs into Services

You cannot covert this study of complex and diverse HIV needs into a simple recipe for services. Commissioning of services by the NHS and councils have to deal with the complexities and interrelatedness of many needs. We see a picture of many people with complex interlocking needs.

These require many people and organisations to contribute to eliminating the problems, at source as far as possible, and by reducing the harm, or by untangling the net of problems around people.

We can also see that although most people have some problems with HIV each year, there are some who report no problems, and many who report that things have improved over the last year. HIV services can take much of the credit for this improvement, but people with HIV are resourceful in sorting out many problems, and have friends, partners and family, who provide valuable support and help in this.

However it is very clear that many people don't get all the help they need. While some people don't like to 'make a fuss,' or feel a failure if they ask for help, other people don't know where to go for help and solutions.

Often what people need is creativity and thinking outside the box. While we can't increase national benefit rates to end a money problem, we can provide emergency financial help, check if people are claiming all they are entitled to, offer support to help people back into paid work, supply information about claiming tax credits, and help people manage their income, bills and debts better.

Mental Ill-health Tops List

Anxiety and depression, self-esteem, sleep and sex are the areas of life that pose problems to the greatest number of people living with HIV in the UK.

The groups reporting the most problems were women, Africans, haemophiliacs, injecting drug users, and people with immigration problems. A quarter of all women surveyed reported having problems with between 13 and 19 of the 20 problems in the last year. 43% of people with immigration problems had 11 - 19 of the 20 problems. The average gay man had 7 of the 20 problems, and 12% reported 13 or more problems in the previous year.

Whoever it is, and whatever the problems, we need solutions tailored to suit the whole situation. Services often need to look for underlying problems (low self-esteem and depression) rather than reaching for a sticking plaster for the symptoms - a relationship in difficulties.

Sometimes the sticking point is not talking about the problem. For others it is hard to ask for help. There is no shame in either. HIV community services and clinics have seen every variety of problem and some support is always available, if not a complete solution.

Our services team are keen to offer whatever help we can support@ght.org.uk and please use our range of online services www.ght.org.uk

What do you need? 2007 - 2008  Sigma Research

 

Download the Summer 2009 issue of Insight - pdf file

Positively Speaking Out

posted: 28/05/2009

Face to face talks by people living with HIV make all the difference to stigma. Kath Morgan, positive speaker coordinator, reveals our inspiring Positive Speakers’ work.

Challenging HIV-related stigma, the Positive Speaker programme was launched in summer 2008, deliberately to dispel HIV myths and raise awareness of the reality of living with HIV. It does this through powerful personal ‘real life’ presentations. The pilot stage ended in March.

There were 32 sessions in our pilot, for a wide range of groups including schools, further education colleges, healthcare and social care professionals and trainees.

Impactful

How did the talks go? We measured the impact with audience questionnaires, before and after the talks, asking people to rate how strongly they agreed or disagreed with eight statements. We looked at people’s attitudes towards who is at risk, life with HIV, the rights of positive people, and working and being friends with people living with HIV.

What people told us shows that as people listen and learn, their knowledge and attitudes towards HIV positive people significantly improve through hearing the Positive Speakers. The most positive changes were in how long a life the audience believed people living with HIV could expect to have now, whether people should be sexually active with HIV, and the right to HIV confidentiality at work. Most impressive were groups of further education college students whose attitudes improved dramatically with just one session.

Face to Face Works

“When you hear the stories of people with HIV, you can understand it more. It made me see it differently.”

What the findings demonstrate is that face to face contact with a person living with HIV, is one of the most effective tools in combating stigma. Facts and figures don’t always resonate, but hearing someone tell their personal story provides a strong emotional connection that makes a deep difference.

Speakers sign up and train for different reasons: wanting to encourage safer sex and prevent others becoming HIV positive; to show people that life with HIV can be a great deal better than they think; to challenge the prejudice and stereotypes of who is at HIV risk; and to empower themselves. Whatever their reasons, speakers feel empowered by talking about their status openly and by being able to directly challenge HIV-related stigma.

Watching the attitudes of the listeners change from misinformed and prejudiced, to being aware, informed and even speaking out against HIV stigma, is an inspiring experience for the speakers and others involved.

There’s been a strikingly positive impact, not only onthe attitudes of those hearing the Positive Speakers’ testimonies, but also on the speakers themselves. Positive
Speakers is out of the pilot stage and now going from strength to strength, with additional speakers now being recruited.

“I feel better about myself since starting Positive Speaking. It has changed my view of myself and made me feel more positive generally.”

Secrets and Lives

Details of the Positive Speaker Programme, how to make a booking, and on becoming a speaker are at our website or ask Kath at kath@ght.org.uk , or on 0161 274 4499.

See and hear for yourselves at our Manchester Pride showcase ‘Secrets and Lives: Coming out of the HIV closet’ at the Frog and Bucket Comedy Club, on Wednesday August 26th - details and tickets at our website.
 

Download the Summer 2009 issue of Insight - pdf file