What do you need? 2001-02: findings from a national survey of people living with HIV

Duration: October 2000 - June 2002

Despite the importance attached to the needs of people with HIV in defining policy, there is no consensus about how such needs should be identified and measured. This UK-wide study gives priority to individual understandings of need, describing them in a way that respects the subjectivity of people's lives.

Using self-completion, freepost return questionnaires the survey assesses difficulties and needs in the following 18 key areas of life: housing; eating and drinking; sleeping; household chores and looking after yourself; mobility; money; managing anxiety and depression; problems with drugs and alcohol; relationships with regular partners; looking after children; friendships; sex; discrimination; self-confidence; knowledge of HIV treatments; ability to take treatments regularly; dealing with health professionals; and training and opportunities. For each category, questions addressed experience of problems, feelings about personal state and capacity to benefit from further support.

Data was collected between July and October 2001. Questionnaires were distributed by 200 service providers including HIV outpatients and GUM clinics, AIDS service organisations, HIV newsletters and the 'HIV-positive' press. This study recruited 1,821 people with HIV from across the UK which represented about 8% of the entire population of people with diagnosed HIV at that time.

The most frequently reported problems related to anxiety and depression (67%), sleep (59%), sex (51%), self-confidence (48%) and eating / appetite (42%). Among those on anti-HIV therapy, 32% reported problems taking treatments and 26% reported problems dealing with health professionals, whereas problems with knowledge of HIV treatments were reported by only 5%.

These problem indicators are only half the story. Some respondents were happy with their current state despite reporting a problem, suggesting an acceptance of the problem and / or satisfactory management of it. Alternatively, some respondents were unhappy with their current state but did not report a problem, indicating the importance of goals, as well as problems, in defining needs.

Needs are complex and dynamic. They are shaped by immediate circumstances and resources, but also depend on individual perceptions of the value and possibilities of life. If the perceived possibilities of life increase, so may personal needs. The relationship of illness and treatments to needs is therefore far from straightforward.

The final report was called What do you need? Findings from a national survey of people living with HIV.

Results were also written up in a Journal article called The needs of people with HIV in the UK: findings from a national survey (International Journal of STDs & AIDS 2004).