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.
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.