27 October 2004
Men From Africa living with HIV in London: A qualitative study
Dr Jane Anderson, Consultant Physician at Homerton University Hospital, began by updating delegates on the background epidemiology of African men with HIV. According to data from the Health Protection Agency, an estimated 1022 African men were diagnosed with HIV in 2003, representing 28% of all men diagnosed with that year. The median age at UK diagnosis is currently 35-40 for men and 30-35 for women reflecting what has been seen in studies in African countries.
Men present for diagnosis at a more advanced stage off disease than women. HIV drug therapy is most effective when started by patients with CD4 counts above 200. However, on average African men are often diagnosed with CD4 counts between 150-220 which often has implications for long term health.
The intention of the study is to document the circumstances of men with HIV from African backgrounds in London and explore their health and social care needs and experiences. Before the study began, two focus groups were held with the Organisation of Positive African Men, (OPAM, a community based organisation in London), in order to explore the research questions and discuss the best way of collecting the data. The focus groups revealed that most men were not minded about the colour or gender of the researcher conducting the 1-to-1 interviews, but it was imperative that he or she understood about HIV. It was with these criteria in mind that the interview (including a member from OPAM) appointed a research fellow.
Patricia Apenteng, the successful interviewee, presented the current results based on answers to a questionnaire given the 37 men (35 heterosexual, 2 men who sleep with men), from 12 African countries, who have completed the study so far.
The men, recruited from four hospitals in East London, had all been diagnosed with HIV at least 6 months and in the UK for at least 6 months. The majority of the men were from Uganda, Zimbabwe and Zambia and aged between 30 and 44. Half of the participants had been in the country for over 4 years, although fewer than half had completed their dealings with the Home Office. The majority of participants (89%) were Christian, with the remaining men specifying no religious affiliation. Just over half the men (54%) were married or living as married and although 73% of the men had children only a third lived with those children. The men were highly educated with 63% having received A’ level qualifications and above. However, 39% of the men had never had a paid job in the UK. The majority of men knew their current CD4 count and viral load. Although most of the men had a GP (77%), only 11% of those men used their GP for health care. The other men attended GUM clinics for all health problems, whether related to their HIV status or not.
The research team are now carrying out a framework analysis of the in-depth interviews with the men and trying to identify emerging themes. The results and a report on the study should be available in the latter half of 2005.
About the speakers
Jane Anderson has been involved in the clinical care of people with HIV infection for over 20 years and is director of the newly established Centre for the Study of Sexual Health and HIV at Homerton University Hospital NHS Foundation Trust. She is also an honorary Senior Lecturer in HIV Medicine at Barts and The London, Queen Mary’s School of Medicine and Dentistry. Recent research includes work with women from African backgrounds living with HIV in London, and an ongoing project with African men. She is the Honorary Secretary of the British HIV Association, a patron of the Terrence Higgins Trust and a medical advisor to Positively Women.
Patricia Apenteng is a Research Fellow in the Centre for Infectious Disease in Barts and the London, Queen Mary’s School of Medicine and Dentistry. She is a sociologist and has been working on various aspects of reproductive and sexual health since 1999. She has carried out research on adolescent sexual health at the University of Ghana, and was part of the Imperial College research team on the Westminster Ethnic Minorities Needs Audit. She is currently working on the African Men’s Research Project, a qualitative study of migrant African men living in London with diagnosed HIV infection. She read her MPhil in Development Studies at Hughes Hall, Cambridge.
Interventions with African men in Northwest England
The Black Health Agency (BHA), a voluntary sector organisation based in Manchester, provides a range of health services for black communities across England. Dr Priscilla Nkewnti, BHA Deputy Chief Executive, provided delegates with a welcome overview of interventions carried out with African men in northwest England.
Dr Nkewnti began her presentation by setting the context of the prevention work. Although there are large numbers of Africans living in the London region, the policy of dispersal has seen a the growth of African communities in the North of England. There are an estimated 15,481 Africans in the north of England, approximately 10,200 of which live in the Greater Manchester area. The 1991 census data estimated there were around 3000 Africans living in the city of Manchester. The 2001 census data estimates this population at 6655 illustrating the changing population dynamics in that area.
Another element of change is highlighted in the country of origin data. In the early 1960s the main groups of migrants were from Ghana, Nigeria and Uganda, but in recent years a more diverse population of Africans has emerged with many other countries being represented. Other demographic variables have also changed, from mainly older men coming to the UK to study in the 1960s, to a more varied population migrating to the North for a vast array of reasons including dispersal by the National Asylum Support Services. Manchester in particular has recently struggled with over 300 young unaccompanied minors, over 90% of whom were young African males. The region also supports a number of people living with HIV. Between January and December in 2003 there 725 newly diagnosed HIV cases in the region, over 80% of these infections were thought to have been acquired in sub-Saharan Africa.
The African Men’s Health Initiative was started in 1999 by the BHA as part of the Northern African Health Forum, which is part of the African HIV Policy Network. The Initiative produces a wide range of resources for use with African communities from audio tapes, for those who can speak but not read their native language, to posters cards and videos explaining the process of going to a GUM clinic.
The BHA also provides the African AIDS helpline which is funded by the Department of Health and open 40 hours a week. Anecdotal evidence has shown that the duration of a call is longer if a man calling the helpline is able to speak to another man. Although this observation hasn’t be tested through traditional research methods, the African Men’s Health Initiative is seeking to explore this idea further.
Historically, African women’s groups have been very willing to participate with the BHA community HIV prevention outreach sessions. African Men’s groups were more reluctant to have the Agency come in and discuss HIV, preferring to leave health issues to the women. BHA managed to breakthrough and reach African men by going to luncheon clubs, which tend to be men only by default. These were mainly retired older men and although they found the outreach sessions useful, the Agency wanted to target the large population of younger, vibrant, sexually-active African males who form part of the sizeable Greater Manchester student population. The organisation recruited young African men to drive the African Men’s Health Initiative by going to bars, nightclubs and social events such as weddings and christenings, to promote testing campaigns and disseminate prevention resources.
In concluding Dr Nkewnti raised a number of research areas that the Initiative would like to see explored, to provide a firmer evidence base on which to build their prevention work. She highlighted the need to investigate the varying prevention needs of each generation, from the young unaccompanied minors to the older British born, black Africans. There needs to be research around finding effective ways to engage African men in sexual health work, so that methods of intervention can be replicated across the country. Researchers should also be deconstructing sexual norms and sexual roles in order to determine how these values affect HIV prevention work. Finally, more research is needed around African values and morals in general, especially highlighting the diverse range of attitudes across the continent. Targeted HIV prevention strategies often regard African communities as a homogenous population. A more nuanced understanding of African communities is needed if prevention work is going to prove effective.
About the speaker
Priscilla Nyah Nkwenti is the Deputy Chief Executive at the Black Health Agency – one of the leading black organizations in the country addressing health and social care issues as they impact on disadvantaged and marginalized communities. Priscilla has worked in the field of sexual health and HIV for over 15 years in a management as well as in a delivery capacity. She has been involved in several consultations for the Department of Health including the recent consultation on the development of the public health white paper ‘Choosing Health’ as part the delivery task group. She has qualifications in health promotion, information management and holds a PhD in Epidemiology and Health sciences. Priscilla has been on the advisory board of the Sex Education Forum for the past four years and is a non-executive director on Trafford North Primary Care Trust in Greater Manchester.
Club Afreaka: An Intervention with African men who have sex with men in London.
John Zavuga from the African Health Promotion Team at Camden Primary Care Trust (PCT) gave a brief overview of the PCT’s work with African Men. Initially, the Team focused their work on the general African population. However, routine data showed that African men were less likely to visit GUM clinics, were presenting for diagnosis with AIDS defining illnesses and were perhaps the driving force behind the epidemic. With this in mind the Team shifted their focus to African men and in September 2000 held the first African Men’s seminar. As well as producing a number of health promotion resources and training the team also run outreach and training programmes targeting men in social clubs, barbershops and other voluntary groups. In 2003, again in response to emerging evidence, the team shifted focus again to work with African Men who have sex with Men (MSM). They have a number of projects running with MSM, most notably Tumaini, the first conference for gay Africans in the UK (November 2004) and Club Afreaka a nightclub for African MSM run by Camden PCT.
Rowland Jide Macauley, is a British-born Nigerian pastor who works for Camden PCT. His two main responsibilities are organising Tumaini and building and promoting Club Afreaka. The club opened it’s doors in July 2003, as a result of suggestions from the 3 rd African Men’s seminar. It runs monthly at the Black Cap in Camden, a friendly venue that charges Club Afreaka patrons a limited door price (£1 with a flyer), runs a drinks promotion and ensures that those who come on the night feel welcome.
Club Afreaka, however, is more than a nightclub organised and run with public funds. It aims to address the sexual health promotion needs of African MSM, whilst increasing their visibility within both the African and gay communities. Every month there is a stall within the club, staffed by experienced health promotion specialists distributing condoms and campaign materials. The club provides a safe space for African MSM to make friends, network and address any sexual health concerns they may have. The patrons of Club Afreaka are mostly young men from aged 18 – 25 many of whom are students. There are also a large number of non-Africans attending mostly existing patrons of the Black Cap.
As an intervention Club Afreaka has overcome many challenges to become successful. Although the club has been unable to compete with mainstream commercial clubs aimed at black gay men, the health promotion team at Camden PCT has managed to reach a subset of African MSM with whom they would otherwise not have come into contact. A short survey carried on 110 of Club Afreaka’s patrons showed that the majority of respondents had taken condoms (85%) or received health information/advice (54%) from the health promotion staff. The survey also showed that the music policy of the club, (African rather than “urban” music), which is thought to be a key attendance influencing factor, was enjoyed by 95% of respondents. When asked what their expectations were for future events respondents replied that they wanted to see more male acts such as strippers and dancers, as well as more live performances and musicians from Africa. Although these expectations are probably a little too far outside the remit of the PCT, organisers acknowledge that more can be done to reach more African MSM.
Club Afreaka has been successful in raising the profile of African MSM and in providing information about the sexual health needs of this group. The future will probably involve a formal evaluation of the club helping others to replicate the intervention elsewhere.
Slides: John Zavuga
Slides: Jide Macauley
About the speakers
John Zavuga has worked in the HIV sector in the areas of policy and African men. He possesses formal qualification in Development Studies that encompass African socio-economic, political and cultural issues. Since January 2003 has been a health promotion specialist for African men: Camden & Islington PCT’s HIV Specialist Services. He co-ordinated the 3rd and 4th National African Men’s Conferences and has been instrumental in developing HIV prevention initiatives for African men who have sex with men.
Rowland Jide Macaulay is a poet, self published author and an educator in business and Christian education. He possesses a Master of Arts in Theology and a Bachelor of Laws. He is also working part time for Camden PCT as a Development Project Manager on the development of the UK’s first ever African gay Culture event Tumaini. He is involved in promoting Club Afreaka and other initiatives to create a self help group for African Gay men in UK.
Developing qualitative research with black and minority ethnic populations
What are the challenges to developing qualitative research with black and minority ethnic populations and how to meet them were some of the questions debated at the last African HIV Research Forum (AHRF) seminar day Research Methods session.
Participants in the seminar gave their views on what they thought the challenges were and I offered some answers, drawing on my experiences of using qualitative methods to research general and sexual health-related topics among Africans in the UK. I suggested that well designed and executed qualitative research conducted by trained interviewers can meet many of the challenges identified by participants. But there are also areas where qualitative research needs to be strengthened to ensure that methods are appropriate, relevant and inclusive. However, some of these methods can raise further challenges of their own and often the key to successful qualitative research with black and minority ethnic populations is the development of research strategies in collaboration with study communities.
Many of the challenges for research identified by participants related to those arising when researching communities for whom English is a second language or comprise a range of dialects. The beauty of qualitative research is that the interview provides an ideal opportunity to explore language and the ways in which people construct their accounts of the social world. The words that research participants use to describe a feeling or experience can provide great insight into understanding phenomena. A good interviewer does not impose their own jargon, but is able to negotiate with an interviewee the appropriate words to use in an interview. Nor would they let words or cultural references slip by without exploring what they meant to the respondent and why the respondent has applied them to their behaviour or circumstances. Qualitative interviews and text- based approaches to analysis provide opportunities for exploring perceptions and attitudes through the language used by respondents to tell their stories. But the ability for interviewers to do this well also depends on community collaboration to agree how research questions should be framed and to inform the design of tools used to collect data. Such collaboration is key in any study, including those led by community researchers, to ensure that population diversity is represented.
For language-based techniques to succeed, it is imperative to work with translators or conduct the interviews in the relevant community languages. Here the challenge can be cajoling funders to resource studies so that the range of languages used in a population can be included, and for researchers to feel confident enough in pursuing this. Often the scope of such studies ends up being focused on a smaller selection of linguistic population groups. This can be adequate, as long as any sample limitations are openly acknowledged, but there is a danger that more vulnerable groups are omitted because of the limited availability of researchers that can speak minority languages. Such groups may be those who are in greater need, for example the more vulnerable members of the population that have recently migrated, or are isolated in care roles at home that limit opportunities to learn new languages, or are dependent on others to mediate their everyday interactions.
One way of ensuring that interviews are conducted in appropriate languages and that vulnerable ethnic groups are included, is the involvement of ethnically matched interviewers. This is a widely used strategy that has been successfully employed in many studies. However, participants identified further challenges, for example a concern that sometimes confidentiality could be compromised if the interviewer is too close to home with the African study population. This can be addressed by: ensuring that interviewers do not work in their own neighbourhoods; including the names of interviewers in recruitment documents so that potential respondents are aware who is conducting the study; collecting data in anonymised forms; storing data in tamper proof holders until it reaches the research centre; or anonymising interview data. The latter can be time-consuming and requires not just the removal of names, but also any references that may lead to deductive disclosure, for example details of employment or voluntary work. An alternative is to explain to respondents what will happen to their interview data and who will see it within the research team, and then storing data with access limited to those named researchers.
For the interviewer, matched interviewing can be a challenge too. Matched interviewers often have to draw on a broader skill set than others because in addition to conducting interviews, they may be expected to recruit respondents and translate interviews. During the interview they will have to work hard to adapt their interviewing techniques to remind the respondent to explain any cultural references or practices that respondents may not elaborate on due to assumptions about shared cultural knowledge.
Whilst workshop participants agreed that community researchers were essential, one of the problems faced by researchers engaging with sexual health research among African communities is that the commissioning and funding of such studies tends to be sporadic, providing specialist community researchers with patchy employment opportunities. More does need to be done to invest in the research capacity of African community interviewers and researchers to enable them to develop sustainable research careers and develop their specialist skills in other areas. One approach to this would be to develop a Research Directory so that community researchers could advertise their research and linguistic skills to a broader research and commissioning community.
Moving on from language, other challenges raised included achieving viable samples from such a diverse population as the African UK population. General population studies have used focussed enumeration to improve the representation of black and ethnic minority populations. This involves door-to-door recruitment in electoral wards identified from census data with higher than average black and minority ethnic populations. However, this can be a resource intensive strategy. Often research is with special populations, for example patients, young people or clinic users. Here the challenges include addressing concerns about why Africans are being targeted for research and require dedicated teams of community recruiters who have been sufficiently trained and briefed to feel confident in addressing respondents’ concerns. Again, qualitative methods, in the form of purposive sampling, provide a means of rising to this challenge. Those features of diverse populations that are relevant to the research question are identified – another activity best carried out in conjunction with community collaborators – and these are used to guide the selection and recruitment of study participants. A combination of setting sample quotas and ongoing monitoring can ensure that sufficient diversity is achieved to answer the research question.
Participants commented on the difficulties of remaining objective during the analysis of qualitative data and ensuring the reported findings reflected the needs and experiences of the study population. Strategies for analysing qualitative data are well documented and a range of manual techniques and computer packages are available to manage the detail and volume of information generated by qualitative studies. These approaches share some basic tenets to ensure that data handing and interrogation are grounded in the verbatim interview data and that analytical questions are applied systematically throughout the entire dataset. Community review during this process can aid researchers in developing appropriate research questions and challenging any unfounded assumptions.
Finally, seminar participants agreed that it was essential that study communities saw the study outcomes and that promises to disseminate to the community were fulfilled. Putting adequate funding for dissemination in place from the beginning of a study and active participation of community collaborators can help ensure that study findings are accessible.
Throughout the discussion, the central role of community collaborators was clear, but in order for community representatives – who include volunteers and those from poorly resourced enterprises as well as established organisations – to collaborate fully and equally, then investment is also required to provide financial and technical support so that all sectors of the community are represented, not just those with the resources to do so.
For further information, contact Gillian at the Health Protection Agency, firstname.lastname@example.org. Some of the ideas discussed here are further developed in Ethnicity and Health, 2003; 8(1):15-27. Researching Sensitive Issues and Ethnicity: Lessons from Sexual Health, Gillian Elam and Kevin Fenton. Further information about qualitative computer analysis packages can be found at http://caqdas.soc.surrey.ac.uk/
About the speaker
Gillian Elam has specialised in qualitative methods for over ten years and currently coordinates qualitative research within the Behavioural Surveillance and Research Unit at the Health Protection Agency Centre for Infections. Whilst at the National Centre for Social Research, Gillian developed techniques for recruiting and interviewing minority ethnic populations, conducting qualitative research into sexual lifestyles and involving community researchers in qualitative studies. Gillian teaches qualitative research techniques to health professionals and is a contributing author to Sage Publications’, Qualitative Research Practice (edited by Jane Ritchie and Jane Lewis).