Project Nasah: HIV treatment information and other needs among African people with HIV resident in England
This research and development project was a partnership between Sigma Research and The African HIV Policy Network (AHPN), The National AIDS Trust (NAT) and NAM. It begins the process of describing the reality of everyday life for African people with diagnosed HIV. It is intended to help commissioners, policy makers and health promotion practitioners to invest in, and deliver more appropriate and higher quality services.
The success of the project depended on 22 African community members who recruited and interviewed 435 African people with diagnosed HIV infection. Respondents were recruited directly from within interviewers' personal and service networks, and while 90% of interviews were conducted in English, 11 other languages were used including Luganda, French, Kiswahili, Swahili, Nyanja, Kikuyu, Bemba, Ndebele, Krio, Luo and Lingala.
The research suggests that health promotion programmes for African people with HIV should include interventions aimed at supporting people in resolving practical problems, such as: maximising their income; dealing with the immigration services; improving their housing and living conditions; managing relationships (and friendships); accessing skills training and job opportunities; looking after themselves and their children; getting around locally; and finding out about HIV treatments. It also suggests they should include interventions increasing mental health and well-being, by addressing problems such as anxiety, depression and lack of self-confidence and the factors that interact with them such as sleeplessness and sexual problems.
The research confirms that the vast majority (91%) of African people with HIV want to learn more about anti-HIV treatments but only one in ten (9%) had any difficulties accessing treatment information in the last year. Data on access to, and experience of, treatment information interventions suggests that the current range of interventions is broadly acceptable to African people with HIV. The role of the clinician as a fundamental source of treatment information was confirmed as was the importance of printed information (including leaflets and newsletters). Also important were opportunities to talk about treatments with staff at HIV and African organisations, and with other people with HIV at support groups and elsewhere. There was also a high demand for seminars, presentations and workshops.
The challenges for African community organisations, HIV organisations, NHS services and for government - both local and national - are significant. While HIV remains so closely linked to social exclusion, the full benefits both of HIV treatment & care and of HIV prevention programmes will not be realised. Findings on disclosure of HIV status underline this point. Many had not disclosed their HIV status to their parents, and some had not disclosed to siblings, friends, and their children. Not only does this point to a very real fear of HIV stigma and discrimination, but it also suggests a reduced likelihood of informal social support.
This research was fundamentally descriptive - it does not answer every question or even address every area it might have. However, it does undermine some of our assumptions about African people with HIV and lays the groundwork for investment in, and development of services. It also helps clarify an agenda for further research.
This research was funded by: Camden & Islington Health Authority; the London NHS HIV Consortium; Gilead; GlaxoSmithKline; Bristol-Myers Squibb; Boehringer Ingelheim; and East Surrey Health Authority.
The final report was called Project Nasah: an investigation into the HIV treatment information and other needs of African people with HIV resident in England.. Three short Briefing Sheets are also available to download.
The questionnaire used is also available to download (PDF format).
Key contact: Peter Weatherburn