Challenges in researching life with HIV/AIDS: an intersectional analysis of black African migrants in London

Abstract

Most social science research on HIV has focused on prevention. The arrival of new therapies generated more studies on life with HIV. However most have been carried out in developed world contexts. Much less is known about the vast majority of those living with HIV and dying from AIDS. If this gap is to be filled, more qualitative research will be needed on affected individuals in the developing world and also among migrants who have left developing countries to live in the diaspora. It will also be essential to explore the lives of individuals from the same communities who may experience HIV in very different ways as a result of their gender and/or sexuality. This paper presents findings from three studies of Black African migrants living with HIV in London. It uses an intersectional approach to examine the similarities and the differences between the experiences of heterosexual women, heterosexual men and gay and/or bisexual men. The article highlights the importance of research of this kind both for providing the evidence base for context‐specific policy development and also for making better conceptual and theoretical sense of the impact of HIV on individuals and their lives.

Résumé

La plupart des recherches en sciences sociales sur le VIH ont porté sur des questions en rapport avec la prévention. L'arrivée des nouvelles thérapies a eu pour effet d'augmenter le nombre de recherches sur la « vie avec le VIH ». Cependant la plupart de ces recherches ont été conduites dans des contextes de pays développés. On en sait beaucoup moins sur la plus grande majorité des personnes qui vivent avec le VIH et meurent du sida. Pour combler cette lacune, il faut plus de recherches qualitatives sur les personnes affectées par le VIH dans les pays en développement, ainsi que sur les personnes qui ont quitté ces pays pour venir former une diaspora dans les pays développés. Il est également essentiel d'explorer la vie des individus issus de ces mêmes communautés qui pourraient avoir des expériences très différentes du VIH, en fonction de leur genre et/ou de leur sexualité. Cet article présente les résultats de trois études ayant porté sur des migrants africains vivant à Londres, avec le VIH. A travers une approche intersectionnelle, il examine les similitudes et les différences entre les expériences des femmes hétérosexuelles, des hommes hétérosexuels et des hommes gays et/ou bisexuels. L'article insiste sur l'importance de telles recherches, à la fois pour apporter des preuves servant à l'élaboration de politiques spécifiques aux contextes et aussi pour permettre une meilleure compréhension, théorique et conceptuelle, de l'impact du VIH sur les individus et sur leurs vies.

Resumen

Los estudios científico‐sociales más recientes sobre el virus del sida han prestado atención a cuestiones relacionadas con la prevención. La llegada de nuevas terapias ha generado más estudios sobre la vida con el VIH. Sin embargo, la mayoría se ha llevado a cabo en contextos en el mundo desarrollado. Mucho menos se sabe sobre la gran mayoría de personas que viven con el VIH y mueren de sida. Si queremos cubrir este vacío, es necesario hacer mas estudios cualitativos con personas afectadas en el mundo en desarrollo y también entre los emigrantes que han abandonado los países en desarrollo y viven en la diáspora. También será de vital importancia analizar las vidas de las personas de estas mismas comunidades que pueden padecer el VIH en formas muy variadas a causa de su género y/o sexualidad. En este artículo presentamos los resultados de tres estudios entre emigrantes africanos de raza negra que están contagiados con el virus del sida y viven en Londres. Utilizamos un enfoque interseccional para examinar las similitudes y las diferencias entre las experiencias de mujeres y hombres heterosexuales y hombres homosexuales y/o bisexuales. En este artículo destacamos la importancia de investigar este campo para ofrecer una base evidencial para la creación de políticas específicas en este contexto y mejorar el sentido conceptual y teórico del impacto del virus del sida en las personas y sus vidas.

Keywords:

• Africa
• HIV/AIDS
• gender
• migrants
• intersectionality

Acknowledgements

Many thanks to Jane Anderson and Sara Paparini and other colleagues at the Centre for Study of Sexual Health and HIV without whose work the analysis presented in this article would not have been possible.

Notes

1. Advocacy organisations in particular have battled to bring the reality of living (and dying) with HIV/AIDS in poor communities to wider public attention. Many of these are actively involving HIV‐positive women and men in research (Nyblade et al. 2003). For recent resources on women living with HIV in developing countries see: http://www.icw.org/

2. African Americans are not included here since we are concerned only with the experiences of migrants.

3. For an interesting summary of a session with this title at the XVI International AIDS Conference see: www.aids2006.org.pag.PSession.aspx?s=131

4. Valuable accounts of living with HIV from different communities in the UK are also available at the Department of Health Database of Personal Experiences of Health and Illness (DIPEx) at: http://www.dipex.org

5. It is important to distinguish this approach from a more radically post‐modern one that denies the possibility of any categorisation at all and hence runs the risk of ignoring important structural determinants of daily life (McCall 2005).

6. It has been widely used in the context of critical legal theory and political science, for example (Hancock 2007). Significantly, it has rarely been used to analyze health issues except in the context of HIV/AIDS (Berger 2004; Bredstrom 2006).

7. For discussion of the potential of this broader use of the intersectional paradigm see Davis (2008) and Nash (2008).

8. Much more work is needed in different settings to unpack the concept of ‘Black African’ and to compare it with the different categories used to analyse race/ethnicity in other settings. Though many of the participants did use the term ‘Black’ and ‘African’ to talk about themselves, more specific regional and national delineations will obviously be more precise (Aspinall and Chinouya 2008). It is also interesting to note, for example, that while the term race/ethnicity is now common usage in the USA as though both are equivalent, the term used in the UK is usually ‘ethnicity’ alone unless it is the phenomenon of racism itself that is under review.

9. While a few of the individual participants did come from wealthier backgrounds than others, individual class did not emerge as a key factor currently shaping the lives of this particular group and hence was not included as a key variable.

10. The term gender is used here to include both biological sex and social gender and their complex interactions.

11. Both homosexual and heterosexual practices have featured centrally in studies of HIV‐related risk behaviours. However, there have been relatively few explorations outside the USA of the implications of a ‘homosexual’ identity for those living with the disease.

12. In some settings it would also have been appropriate to also include a sample of lesbian women. However this was not a practical possibility in the context of an African HIV‐positive migrant group. For a discussion of related issues see Kwakwa and Ghobrial (2003).

13. For detailed reports of the results of these studies, including quotes from participants, see Doyal and Anderson (2003), Doyal and Anderson (2005), Doyal, Anderson and Apenteng (2005), Doyal, Anderson and Paparini (2007) and Paparini, Doyal and Anderson (2008).

14. This is the term used in official statistics and in much epidemiology. For a critique of the term see Young and Meyer (2005). For a critique of the limitations of official data on sexual orientation see Aspinall and Chinouya (2008).

15. The men were not asked if they were heterosexual but whether they had ever had sex with a man. All replied in the negative, most denying such a possibility very strongly.

16. These men from the OPAM were an important source of information not just about themselves but also about the other men they had worked with in similar situations.

17. For a wider discussion of the difficulties of using sexual orientation as a research category in the UK see Aspinall and Mitton (2008).

18. The rights of migrants to healthcare in the UK are complex and change frequently. Recent trends have been towards a more restrictive regime but a recent legal judgment regarding healthcare for failed asylum seekers is likely to reverse this unless it is challenged in a higher court. For updates on changing legislation see: www.refugeecouncil.org.uk

19. The study participants did have varying levels of income and resources with some being relatively well off. However the majority were surviving on very low incomes.

20. This term was preferred by most to ‘men who have sex with men’. However, the naming of homosexuality among African men is a sensitive issue. For more detail see Doyal, Anderson and Paparini (2007) and Doyal, Paparini and Anderson 2008.