Prevention Needs of Africans

posted: 16/12/2009

Updated with additional information  - The HIV and sexual health prevention needs of Africans living in England are highlighted in a report out today. During late 2008 and early 2009, Sigma Research worked with over one hundred organisations, including George House Trust, to carry out the Bass Line 2008-09 survey.
More than 2500 African people living in England took part.
 

The main report is in two parts. Part one sets the scene, discusses demographics, HIV testing, sexual HIV transmission behaviour, HIV prevention needs and HIV prevention interventions. The second part aims to identify sub-groups of Africans with high levels of risk behaviours and / or high levels of unmet prevention needs.
 

More detailed findings for NW England are in a supplement based on the 157 people in the region who took part. Most live in Manchester and detailed figures for Manchester are available. The rest of the region is aggregated together, because fewer than 20 took part from each of the other Primary Care Trusts.
This BASS Line survey and particularly the NW regional figures will help identify the most pressing regional HIV prevention needs of African people, and should help planning, delivering and funding HIV prevention services for Africans.

African Men Top in HIV Prevention Needs
Men, not women, should be the top priority among Africans in the UK. This survey suggests that men are more likely than women to report sexual risk behaviours, to know less and be less likely to have been tested for HIV. Women are far more likely to be tested because testing in pregnancy is now routine.

They also recommend that work with men pays particular attention to the needs of men who have sex with both men and women, and to men who only have sex with men. In addition, there are high levels of need among people with limited schooling.

‘I’ve no need to test’
A third have never had a HIV test result and a similar proportion have never been tested for other STIs. Only a half of those who haven’t yet had a HIV test would consider having one.

Men were less likely than women to have tested for HIV, to have diagnosed HIV and to know where to get tested for HIV.

The main reason people gave for not testing was thinking there was no need: only 1 in 3 Africans knew that at least 1-in-20 of all Africans living in England have HIV. The report recommends that to increase uptake of testing, health promoters must increase individuals’ awareness of their vulnerability to HIV and the costs of not knowing their HIV status early enough for HIV treatment to be able to work properly.

Sexually active, sexual risks
Three quarters of the people taking part had sexual partner(s) in the last year. More than half had a regular sexual partner, which was more common in men than in women. One-in-four of the people with regular partners said they had other sexual relationships outside the regular relationship, again more common in men than women.

In addition, one-in-ten who said they had sex in the last year reported definitely or probably having sexual intercourse without a condom with someone of a different HIV status to themselves. Men, and those with more sexual partners were more likely to report this risk.

Moreover, compared to women, men were more likely to be unconcerned about being involved in HIV transmission, and more likely to have a problem getting hold of condoms, and were significantly less knowledge about HIV in general.

Among the men, those who had sex with both women and men were the most likely to report having multiple partners, sex outside a relationship, unprotected sex with someone of a different HIV status and condom failure. Men who only had sex with other men were the most likely to be diagnosed with a sexually transmitted infection or with HIV.

As a consequence, the researchers call for more work with homosexually active African men, including men who also have sex with women.

Some under-educated
Although the sample was generally well educated (three quarters had a university or college education), 4% had no formal education or only went to primary school. The researchers recommend that more prevention resources are targeted at this group. While they were the least likely to be tested for HIV, they were the most likely to be diagnosed with it, or with another sexually transmitted infection. There were also strong associations between low education and risky behaviour, and low education and lower levels of HIV knowledge.

Preferences for information
The survey asked respondents about the ways in which they would prefer to learn more about HIV. Overall, more respondents preferred to get further information through reading compared to talking to someone, although many people mentioned both.

“Reading in private” was the most popular reading option, and of those who specified a particular type of written format, a website was the most popular. However talking face-to-face with a health worker was preferred to using a helpline or internet chat room.

People strongly prefer being given health information by health professionals, especially doctors (49%). The authors therefore advise community organisations that workers need to have sufficient expertise in HIV if they are to engage effectively with service users. Very few people say that the person giving information should be of a certain ethnicity, gender or age, or should have HIV themselves.

England findings
Ignorance is about - 1 in 10 do not know

• that people can have HIV without knowing
• there is still no cure for HIV
• you cannot tell whether someone has HIV by just looking at them.

1 in 5 do not know

• there are HIV treatments
• condoms are free from some services - in Manchester even fewer know this - 1 in 4

2 in 5 do not know

• there have been prosecutions for HIV transmission in England
• Africans are not deported from the UK simply for having HIV
• the high prevalence of HIV among Africans in England.

Condom shame
There are problems with condom access and use. Condoms are unwelcome to 1 in 3 who fear stigma - they worry what people would think of them if they were seen carrying condoms.
Too shy to talk about HIV
1 in 3 have problems with safer sex negotiation skills and confidence who are not sure that they could easily talk about safer sex and HIV with new sexual partners.

1 in 10 feel powerless to manage transmission risks
Among those not diagnosed HIV positive, more than one-in-ten did not feel they were in control of whether or not they became infected.
Similarly, among those diagnosed with HIV, one-in-ten disagreed or was unsure that they had control over exposing sexual partners to the virus or getting infected with another type of HIV.
 

NAHIP programme
This study adds to a body of work undertaken as part of the National African HIV Prevention programme (NAHIP) that will help health promoters tailor interventions for African communities in England:
This was the largest ever study of sexual health and HIV prevention needs among African people in England.

Download the main report from George House Trust, or order a free paper copy

The NW England report is here.

Other regional reports for England.  
 

African Prevention ToolKits and other resources

Source

Quick HIV Needs Conference

posted: 10/11/2009

A half day HIV conference in London just before World AIDS Day will attempt to answer the question - What do people living with HIV need now?

Hestia Housing & Support are putting on a free conference around HIV services and what people living with HIV need now. Councils are increasingly mainstreaming the provision of HIV services. Is this the right way forward? What should be the future of HIV services in England?

Looking at this from professional and service user perspectives, the conference covers

• The housing needs of people living with HIV
• Future commissioning possibilities in HIV social care
• Financial needs of people living with HIV and the trends of applications to hardship funds
• What women with HIV need
• A Service Users perspective

The conference is for commissioners, workers and all those interested in the future of HIV services.
 

Conference Programme for 27 November

Speakers
The speakers are

• Neil Gerrard, MP - Labour MP for Walthamstow & Former Chair of the All-Party Parliamentary Group on AIDS
• Peter Weatherburn - Director, Sigma Research (What do You Need? and Framework for Better Living with HIV in England - 2009)
• Kwesi Adabunu - Commissioning Officer, Greenwich Adults and Older Peoples' Services
• Nicola Jacobs - Policy Officer, The National AIDS Trust
• Ian Leckie - Programmes Manager, Crusaid
• Elisabeth Crafer - Director, Positively Women

Book your place online  or by email
 

50Plus – What Do You Need?

posted: 04/11/2009

50Plus is research by Terrence Higgins Trust with Age Concern (England) and Help the Aged. It’s to find out the needs and concerns of people over 50 living with HIV in the UK, so services can be improved. Currently, we know we could be doing more and better for people over 50 with HIV, whether someone is newly diagnosed, or has been living with HIV for many years.

£100 prizes

There are two £100 prizes of shopping vouchers which will be randomly awarded for people who take part. 
 

Near 900 people with HIV over 50 in NW England

There are more people over 50 with HIV than ever before and numbers are rising rapidly. In NW England already 16% (864) people diagnosed with HIV are over 50. We know people will need support in various ways, but want services to e based on the real needs of people over 50 with HIV, not our best guess. So we’re asking as many people in their 50s ‘what do you need?’.
 

Age makes a difference?
What’s different about living with HIV as you get older? It might be different health problems. It might be the worry of retiring without anything other than a basic state pension. It might be not having friends or family to help look after you, because of HIV. Or it might be “how will my local support group for older people cope with people with HIV?”

Whatever your issues and interests, we want to hear about them. And if you know other people with HIV over 50, we’d love to hear from them too. Please encourage others to take part in the survey.
 

After the findings?
It will all be anonymised and individual identities will be confidential, but we will be producing a report which we will share with everyone who wants it, showing our findings and recommendations for future service development.
 

What you can expect to see after the survey

Terrence Higgins Trust will be producing a simple guide for people over 50 with HIV to services and entitlements, a report of the survey, a detailed list of all the important writings about the needs of older people with HIV, and what services are available elsewhere, such as the USA, where they are a few years ahead of us.

Take me to the Survey
If you’d like to take part, just click here. It should take about 30 minutes and will be online until January 4 2010.

Please tell your 50+ friends.
 

Call Terrence Higgins Trust on 020 7812 1630 if you want any posters, flyers or paper copies of the survey. Growing older with HIV is about more than not dying just yet. Help us make it better than that for everyone.
 

The research is being managed by Michael Bell Associates, who have a good track record of research for people with HIV, LGBT people and people seeking asylum. The report will be guided by an Advisory Committee that includes people with HIV, the organisations involved, research professionals and clinical staff. 

Article in New York Magazine about HIV and ageing with pictures and profiles of 8 older people living with HIV

Top HIV Support Needs Updated

posted: 15/04/2009

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, according to a new study published by Sigma Research. These are about the quality of life and personal experience of the majority and aren't practical and physical problems. However, there are many people facing severe practical and physical problems as well.

Much of the time people experiencing problems had not received any help or support during the past year. When people did receive help with the top four issues, it was frequently from clinical services, but informal support from friends and family and community sector services were also highly valued.

Methods
The What do you need? study used a fairly lengthy self-completion questionnaire that was distributed by a range of HIV-related voluntary organisations and a number of HIV out-patient clinics. Four out of ten respondents were recruited from aidsmap.com or NAM’s HIV Treatment Update newsletter. George House Trust promoted the survey through this website and at regular services.

A total of 1,777 questionnaires were completed by adults living with HIV in the UK.

20 topics examined

The questionnaire focused on 20 topic areas that previous research has identified as potentially problematic for people with HIV, such as immigration, relationships with family, self-esteem and discrimination. For each of these topic areas, the questionnaire attempted to establish whether the respondent had experienced problems in the past year, and what those problems were.

African people's needs then and now

When this survey was last conducted in 2001, only 6% of respondents were black African, and the researchers have managed to increase this participation to 15%. Nonetheless, this falls short of the 37% of people with HIV in the UK who are black African (the latter figure comes from the Health Protection Agency’s monitoring of people using treatment services).

Moreover, the sample is disproportionately male (79%, compared to 66% of people with HIV), disproportionately gay or bisexual (72%, compared to 46% of people with HIV) and includes a greater proportion of older people (38% are over 45, compared to 30% of people with HIV).

However the published report does deal with this bias by analysing separtely the needs of women, the young, black Africans, people with immigration problems, and people who are recently diagnosed, for example.

Problems for 7 in 10 people
In each of the following areas seven out of ten respondents reported having problems in the past year:

• anxiety and depression,
• self-esteem and self-confidence,
• sex, and
• sleeping.

Moreover, when questions about problems were asked in slightly different ways, the greatest levels of need were always in relation to the same four areas.

Many respondents described the cause of their anxiety or depression, and whilst the responses were very diverse, a great many were explicitly related to living with HIV. Moreover, among the most common causes cited for problems with self-esteem and self-confidence were worries about the future, changes in appearance or body, and worries about disclosing HIV status.

The most frequent problem related to sex was having too little or no sex, and this was often linked to poor self-image. Difficulties sleeping were most commonly caused by problems with mental health, physical health or medication.

Other needs of many people

Whilst these mental-health-related problems were important for all sub-groups, some additional issues were identified by large numbers of people in some of the groups.

For example, the top six problems reported by black African respondents were:

• skills and training opportunities,
• anxiety and depression,
• money,
• self-esteem,
• sleep and
• sex.

Unsurprisingly, people who had immigration problems tended to also report problems in practical areas such as skills and training, money, housing and work.

Moreover, a quarter or more of all respondents reported problems with mobility, housing and living conditions, household chores and self-care, and eating well.

Sources of help and support
As well as asking about the problems people had experienced, the survey also asked about whether the respondent believed that, with more help or support, their situation could be improved. Similarly, respondents were asked who or what had helped them with their problems over the past year. These results are likely to be useful to commissioners and service providers.

No help for half or more people

In a large number of areas, over half the people who had experienced problems had not received any help with that problem. This was the case for problems with sleep, self-esteem, training and skills, eating and drinking, household chores, family relationships, money and work. What’s more, three quarters of those having problems with sex, friendship or alcohol and drugs received no help.

When help was provided, the findings highlight the essential role of informal sources of help and support. For example, friends were among the most commonly called on source of support for problems with mobility, family relationships, friendships, partners, children, work, housing, training and skills, and household chores.

Partners, spouses, family and parents also provided support to many.

Counselling and psychology services were frequently cited for their help with anxiety and depression, self-esteem, alcohol and drugs, sexual problems, partner relationships, family relationships, and friendships.

HIV clinics were important sources of help for many of the same issues, as well as for problems with eating and drinking.

HIV organisations

HIV organisations provided help in a great many areas, especially immigration, housing, money and friendships.

GP practices and prescribed medications were often mentioned for their help with sleep problems, anxiety and depression.

Councils and social services departments were mentioned for their help with housing, but less so for other areas.

Moreover, in a number of areas, especially work problems and training and skills, relatively few sources of help were mentioned.

It's a commissioning challenge

The researchers believe that the range of needs highlighted in the report reveal significant challenges for service commissioners and providers.

Moreover they note that: “Changes in service provision over the last five years have been driven by funding pressures rather than an understanding of the changing needs of people with HIV. Such pressures remain, but a clearer assessment of needs will hopefully improve our capacity to plan and fund appropriate services.”

George House Trust

35 people contributed to the survey from here, either by completing a booklet or online (the split in how people took part was half and half). Thank you.

There's a summary report which includes responses by organisation, and you can download it here.

Reference
Weatherburn P et al. What do you need? 2007 - 2008: findings from a national survey of people diagnosed with HIV. London: Sigma Research 2009. (pdf file 2.99Mb)

Source

Long Term Survivors Needs

posted: 12/11/2008

Feedback from the Long Term Survivors event held on Wednesday 8 October 2008.

This event was held following a number of comments in the service user survey earlier this year. We wanted to get people together to give a opportunity to tell us what is needed by long term survivors, from George House Trust services.

10 people attended from all the different George House Trust services.

Some people had been diagnosed very long term, up to 23 years, others rather less - 6 or 7 years. A long term survivor is someone who has lived longer than 5 years with HIV.

We talked about how the word "survivor" is quite an emotive term and that it might be better to talk about people who were long term diagnosed.

Mostly people said that they didn’t want anything special, or another service, although there were some interesting comments suggesting a Long Term Diagnosed course, similar to the Newly Diagnosed course. We will look into this as a possibility.

Unsurprisingly not everyone in the group agreed about everything.

Some people spoke about putting their life on hold when they were diagnosed as they were told they were going to die. Eventually the longer they lived they realised this was not the case. Some people face significant uncertainty since continuing treatment cannot be guaranteed as they don’t have permission to stay in the country; there is still huge uncertainty in some people's lives.

Where from now?

We will host another meeting like this in about 4 months, watch the website diary for details.

If you have any comments or feedback then please email Lynda Shentall Director of Services

or ring 0161 274 4499