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What do you need? 2007-08: a health, social care, support and information needs assessment of people with diagnosed HIV in the UK

Duration: March 2007 - March 2009

What do you need? was a health, social care, support and information needs assessment of people with diagnosed HIV which occurred across the UK in 2007-08. It used What do you need? 2001-02 as a template to develop a self-completion survey, in collaboration with a range of key stakeholders.

The questionnaire addressed twenty separate needs areas ranging from basic necessities of everyday life - such as a settled immigration status, decent housing, adequate food and sleep, and access to training, work, money and income - to difficulties with relationships with friends, family, partners and looking after children. It also examined difficulties with sex and anxiety, depression, self-confidence and self-esteem and experience of discrimination.

The questionnaire was available for completion for 6 months from June 2007 to January 2008, using two key recruitment methods.

Method 1: Booklet distributed by HIV agencies
The questionnaire was designed as a self-sealing, postage-paid, (A5) booklet which was distributed by 107 agencies providing services to people with diagnosed HIV, including some NHS HIV out-patients clinics.

Method 2: Online survey
The questionnaire was also available to complete and submit online in both English and French. The online version of the survey included identical questions to the booklet. Its availability was promoted via the websites of 11 collaborating agencies.

The questionnaire is available to download in English.

Overall, we received 1929 questionnaires, including 1113 booklets and 816 online responses. Of these, 152 (8.6%) were excluded from further analysis because they gave no evidence of living within the UK (n=33) and / or having diagnosed HIV infection (n=103) and / or they had previously taken part in the study (n=36). This left a final sample of 1,777 people with diagnosed HIV that were resident in the UK.

Reports & Outputs: Survey findings will be presented in a range of different formats to meet the needs of a wide range of end users including commissioners, service providers, and researchers. Collaborating agencies recruiting 20 or more people received a data report summarising the key data for the people they recruited. In addition, local area data reports are available here. They summarise the key data for residents of Wales, Scotland and England, and within England for seven of the Strategic Health Authorities, with data presented for residents of the Primary Care Trusts within them.

All these reports are supplementary to the main survey report which is available here. Findings will also be written up for academic journals and for conferences.

Key contact: Peter Weatherburn