Sex, sleep and self-esteem: what we need most

This article originally appeared in HIV Treatment Update, a newsletter published by NAM between 1992 and 2013.
This article is more than 10 years old. Click here for more recent articles on this topic

Anxiety and depression, bad sleep, bad sex, and low self-esteem: these are our biggest bugbears as people living with HIV.

More than two-thirds of the 1777 people with HIV who answered a new survey on their needs have reported that they’ve had problems in these areas of their lives in the previous twelve months. In the areas of bad sleep and bad sex, the number of people reporting problems has increased significantly since an earlier survey six years ago.

The last time the HIV-positive population of the UK answered the question “What do you need?” (WDYN) was in 2001, when the previous survey of that name was conducted by Sigma Research. The results of the second WDYN, based on a survey conducted in 2007-8, have just been published.1 Like the first, it asked HIV-positive people in the UK whether they had problems in the previous year in 18 named areas of their lives.

Glossary

depression

A mental health problem causing long-lasting low mood that interferes with everyday life.

anxiety

A feeling of unease, such as worry or fear, which can be mild or severe.

This survey also asked about five other areas not explored by the first survey. These were direct problems with HIV treatments, access to treatments, immigration, work, and work skills/training.

The make-up of the population answering WDYN changed between 2001 and 2008. The 2008 respondents were somewhat less likely to be male (79% versus 85% in 2001) and white (79% versus 89%). They were also older, with only 30% in their 30s compared with 43% in 2001.

The proportion of people who had had problems with sleep in the last year increased from 58% to 70% between the first survey and the second, and the proportion with sex problems from 50% to 68%. Other areas that saw steep increases between surveys were drugs and alcohol, where the proportion citing problems related to these nearly doubled from 14% in 2001 to 27% in 2008, and problems with friends, where an increase from 25% in 2001 to 41% in 2008 may indicate an increasing proportion of people experiencing social isolation. Although only a minority of respondents had had problems with immigration, the proportion that did increased from 4% to over 7%.

In some other areas results cannot be compared between surveys as different questions were asked. For instance, the 2008 survey asked whether people had problems with both self-confidence and self-esteem – and 71% did – while the previous survey asked about self-confidence alone - and 41% did. The new survey split questions about discrimination into ‘discrimination from family’ (experienced by 11%) and ‘discrimination from healthcare workers’ (a worrying 20%).

The finding that in the new area of employment and employability people had significant levels of need is an important one: this wasn’t included in the 2001 survey. Fifty-four per cent of respondents had needs in the area of work skills and training, perhaps indicating a wish to get back into employment, while over a quarter mentioned problems with work itself.

The survey also allows us a glimpse of the needs that you, HTU’s readers, have. The questionnaire was sent to all HTU readers and more people – 30% of respondents - accessed the questionnaire via this mailout than in any other way, with NAM’s website aidsmap.com contributing another 10% of respondents. The questionnaire was also distributed by numerous other HIV organisations including Terrence Higgins Trust, Positively Women, the George House Trust, the Cara Trust and GMFA.

The figures show that the respondents who accessed the survey via HTU were older and more likely to be male, white and UK-born than other respondents. They were also somewhat more likely to be gay, had the highest education levels of respondent groups, and were less likely to be newly diagnosed (only 3% of HTU readers had been diagnosed in the last year compared with 18% of THT respondents).

HTU readers had the highest levels of need when it came to disturbed sleep and to sexual problems and also to problems directly to do with HIV treatment. These may reflect greater age and time living with HIV than other respondents. They also had the lowest level of need when it came to training and skills, perhaps reflecting higher levels of education and employment.

What do we conclude from these figures? The most striking finding is undoubtedly that there was no area in which fewer people had problems than in 2001. In areas like money, diet, and the biggest one, anxiety and depression, needs were more or less unchanged; in the areas mentioned above, they were increased.

What do you need? can be criticised for some shortcomings. In particular, it doesn’t ask about severity of need, so, for instance, it lumps together people who had a few blue Mondays during 2008 with people who experienced a year of crushing depression. But the last survey proved very influential in prioritising services for people with HIV during the last seven years, and we trust the new one will do the same.