Michael Bell Associates June 2004
Acknowledgments
We would like to thank the staff and volunteers at UK Coalition who contributed their time and effort into producing this questionnaire, managed its distribution and inputted the data. We would particularly like to thank all those who have taken the time to complete the questionnaire and contribute their valuable views.
This work was funded through the Department of Health.
Introduction and Context
This report presents the analysis of data obtained as a result of a questionnaire designed to research the needs and involvement of people living with HIV and AIDS in their own care and policy decisions. The questionnaire was administered through the December/January issue of Positive Nation as well as through a variety of organisations working in the sector and the internet. Besides informing the development of services and the future involvement of people living with HIV and AIDS, the findings of this work are intended to inform this year’s planned UK Conference of People Living with HIV and AIDS, which is being arranged in partnership with UKC, Positively Women, The National Long-Term Survivors Group and the National Aids Trust. The outcomes of this survey and the conference will contribute towards NAT’s Positive People’s Involvement Project, which is supported by the Community Fund and the above partner organisations.
Profile of Respondents
A total of 214 questionnaires were returned. Whilst more than half of the respondents (57%) came across the questionnaire through Positive Nation, others completed the questionnaire through the internet, or through other organisations.
The majority of respondents (63.6%) were diagnosed with HIV between 1995 and 2003. Whilst most stated that they personally knew someone else who was HIV positive, there were still 7% who stated that they did not.
Most respondents (83.2%) were male. A relatively high proportion of respondents were White (83.2%) and a relatively low proportion were Black African (11.2%). The degree to which the under-representation of the latter group is a cause for concern is dependent on the extent to which this is due to the (relatively lower) number of responses received from partner agencies or the need to engage better with African communities. Just over three quarters of respondents were British citizens. The next biggest group was refugees and asylum seekers (10.2%), and EU citizens (7.5%). Just under half (47.7%) of the respondents lived in London .
Education levels of respondents were relatively high, although income levels of respondents appear to be low. Around two-thirds (67.9%) of respondents earned less than £20,000 per year and over a third (35.6%) stated that they earned less than £10,000 per year. The issue of social isolation may be significant. Nearly two-thirds of respondents were living without a spouse or partner. A large proportion (44.9%) of respondents were single. A large proportion (78.1%) of respondents were homosexual men. Of these, 53.2% were single. This is a high proportion in comparison to other findings – in a national survey of gay men, 65.2% of positive gay men were in a relationship.* Of those who had a partner, relatively more were discordant than concordant.
Awareness and Use of HIV-related Information
Whilst the majority (72.5%) of respondents found it ‘easy’ or ‘very easy’ to obtain information relating to HIV, there were still 13.5% of respondents who felt this was ‘difficult’ or ‘very difficult’. Those living in London appeared to find it easier to obtain information relating to HIV. Given that this population is a self-selecting sample which is likely to be biased towards those who have a higher level of awareness of HIV-related issues, this indicates that there is a significant sub-population which is feeling isolated in terms of their HIV-related needs.
Most common sources of information were cited as newsletters/magazines, clinics, and websites. Despite accessing these to sources of information, over a third of respondents did not feel they were fully aware of the support available to them and others living with HIV. This again highlights that there appears to be a significant sub-population is not aware the support available to them.
Services and Support: satisfaction and needs
Respondents were asked to rate their satisfaction with a list of medical and non-medical services that they had used in the last 12 months. With regards to medical services, high levels of satisfaction were cited with pharmacies, HIV clinics and GUM/STD clinics. Greatest levels of dissatisfaction were expressed with the use of NHS Direct, A&E services, and dentists.
With regards to non-medical services, there were high levels of satisfaction with counsellors/therapists, specialist HIV advice services and peer support groups. Low levels of satisfaction were expressed with the use of employment & training services, housing officers/advisors and social services.
Almost a quarter of respondents for whom the question was applicable stated that they had constant difficulties in taking medication at work. Although around 65% of respondents for whom the question was applicable stated that they had no problems regarding discrimination at work due to their HIV status, this still leaves a significant 35% who expressed a degree of difficulties in this area.
When asked about other needs relating to their HIV status which had not been met, respondents described various forms of discrimination, the desire to find work and made specific requests for more/better services.
Involvement
Respondents were asked a series of questions relating to their involvement in four key areas:
A greater number of respondents expressed difficulties in the two non-medical areas than the two medical areas. When asked to elaborate, a variety of issues was revealed, covering isolation, disillusion with services, feelings a lack of care/sympathy from services, (lack of knowledge about) the side effects of medication, and what was described as “the AIDS bureaucratic mafia”. Some also mentioned being refused treatment or services and lack of support for heterosexuals.
There appeared to be a clearer view amongst respondents about how to get involved in decisions in the two non-medical areas than the medical areas. Respondents were also more likely to be involved in the medical areas and to feel that this involvement was ‘about right’ or ‘high’. Where respondents have been involved, satisfaction with involvement in the medical areas was higher than in the non-medical areas.
The most common reason for respondents getting involved in decision-making was to learn more about HIV-related issues (41.6% cited this as a reason for involvement). This was closely followed by the desire to help others with HIV (38.3%). Over a third of respondents became involved to reduce feelings of isolation and to meet more people in their situation.
Respondents were more likely to want to spend more time in the two non-medical areas than in the medical areas of involvement asked about. However, they were also more likely not to want to spend any time in participating in decisions in the two non-medical areas. Similar results were obtained regarding the level of responsibility respondents would like to have in decisions about their or others’ HIV-related needs.
A variety of reasons were cited for preventing respondents from increasing personal involvement: lack of time; a feeling that involvement wouldn’t lead to a meaningful outcome; (mental) health issues; and a desire to reduce HIV to a “… very small part of life as much as possible.”
When asked what they felt they could offer, it is clear that respondents felt that their first-hand experience of living with HIV was a vital aspect of what they could contribute through their involvement.
Although most respondents did not feel pressurised to get involved when they would rather not, almost 20% did. Reasons given for this highlight that in some cases the pressure to be involved seems to arise out of a desire to improve services – for example: “ to combat bureaucracy and laziness/prejudice from official bodies”. For others, this pressure appears to arise out of the ‘culture of involvement’ – for example, “assumed that I'm willing just because I'm HIV+”.
The UK Conference of People Living with HIV
Most respondents (93%) thought this conference was a good idea and just over half stated they would definitely or likely participate. Just over a third of respondents were not sure if they would participate, and less than 10% were either unlikely to attend or stated they would definitely not attend.
The difference between the number of respondents who think the conference is a good idea and those who stated they were likely to participate highlights that some efforts may need to be made in encouraging the former to attend the conference. This is especially so in light of the fact that whist many had been to a conference or public meeting in the past, there still remained a third of respondents who had never been to such an event.
When asked what the three best aspects have been about public events, respondents rated ‘listening to others with good ideas speaking out’, ‘meeting in small groups’ and ‘being able to express my views’ most often.
A wide range of valuable suggestions were provided on particular topics that respondents would like to see covered at the conference.
* Hickson, F and Weatherburn, P et al. “Out and About: Findings from the United Kingdom Gay Men’s Sex Survey 2002” Sigma Research, 2002.
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