Dr Sara Paparini Terrence Higgins Trust

1. Applying intersectionality to research methods: examples from a qualitative study of HIV discrimination Dr Sara Paparini Terrence Higgins Trust

2. What’s all this? • Findings from PhD research • A qualitative study of the experiences of discrimination of 35 PLWH • Carried out between 2008-2013 • After previous years of research across voluntary, clinical and academic sectors

3. Why HIV? • HIV is helpful to think ‘with’ • HIV disproportionally affects ‘marginalised’ groups in the UK • HIV is transmitted through behaviours that are morally ‘charged’ • HIV thrives where there is prejudice, ignorance and inequality • HIV affects people in different ways: same illness but not the same story

4. Estimated number of people living with (both diagnosed and undiagnosed) HIV infection in the United Kingdom: 2012

5. Social research on HIV in the UK (Mostly): • Quantitative • Behaviour/prevention oriented • Psycho-social studies • Focuses on the two majority groups in the epidemic (gay men/MSM and black Africans) • With little or no research on any other groups

6. Analytical lenses for HIV in the UK • (Black) Ethnicity • (Homo) Sexuality • Sometimes ethnicity + sexuality • Sometimes ethnicity + gender • (More recently) age

7. HIV discrimination • Is a social process • Takes place at different levels (individual, interpersonal, structural) • Takes different forms in different contexts (think of HIV as a global pandemic made up of lots of different epidemics) • Is inseparable from pre- and co-existing forms of discrimination (against drug use, against sexual minorities, against foreigners etc.) • Is inherently MULTIPLE

8. Why not try intersectionality? • An analytical framework to understand multiple and simultaneous forms of oppression… • …and of opportunity • Originally developed (by K. Crenshaw, P. Collins et al) as a critique of feminist and anti-racist discourses that privileged gender over race and vice-versa • Individuals (and groups) are socially located (in different contexts and at different points in time) • Social locations are shaped by intersecting axes of oppression (and opportunity) aka axes of domination, categories of difference etc. • Main axes of interest are race, class and gender… • But also sexuality, disability, seropositivity and so on

9. Key principles of intersectional categories • Time, place and subject-specific • Mutually constituting (rather than commensurable) • Non-hierarchical (rather than primary) • Internally heterogeneous (rather than representing group identity) • Operationalised simultaneously in analysis • Used reflexively throughout research studies

10. How did I use it? In theory… • By asking: what does it mean to take an intersectional approach to the entire research process? In practice…. • Reviewing the literature for multiple categories and for methodologies • Recruiting • Sampling • Analysis • Presentation of findings

11. Choosing categories (1) Should be universally relevant to any social structure Race/ethnicity; sex/gender; class (2) Should be of particular relevance to the context under study Sexuality; citizenship (3) Should be applicable to all participants BASED ON: • Broader knowledge of social science and health research • Established use in the social science of HIV in UK and comparable settings • Relevance in relation to current policies that affect PLWH

12. KEY CHALLENGES -1 • How many categories (the list is endless?) • What subcategories? • What definition (for each category)?

13. Intersectional matrix (basic)

14. Recruitment • Aiming to include people at different ‘intersections’ • Contacting organisations for PLWH that serve different groups of clients – most orgs are for all PLWH but in reality the client-base is made up mostly of people from certain backgrounds • Recruiting through the NHS KEY CHALLENGE Obtaining NHS ethics approval !!!

15. Intersectional matrix (final/complex)

16. KEY CHALLENGES • Assigning categories: whose choice is it? • Detailed measurements (i.e. class, citizenship) • And what about the missing intersections?

17. Intersectional analysis & key challenges • A (nightmare!) version of thematic analysis • Coding for negative/discriminatory events and positive/neutral ones • Coding for categories (one or more) involved in discrimination • Coding for who did what to whom But then? • Cannot divide participants by types such as all women, all UK-born, all African working class men etc. (too many cases) • Cannot draw on similarities/differences (too much variation)

18. Presentation of findings • Descriptive findings that pertain to the definition of stigma and discrimination, the main actors involved, the main contexts Then • Findings presented via each category (not ideal!) but showing each category in interaction with the others – as available in the data • Suggesting ‘meta-categories’ that can encompass the range of the interplays of the categories in intersection • Reflecting on emerging categories and on methodological experiment

19. Key findings – in brief! • Time-dimension of stigma and discrimination and connections between the intensity of the relationship and the severity of the impact • Emerging categories of salience (age, LTSD, employment status) • Advantage/disadvantage with regards to discrimination on the basis of each category in interaction with the others • Security/insecurity in different life domains: material, emotional, health-related • Policy ramifications and recommendation based on more complex approach to the issue

20. Dilemmas for discussion • Do you see any contributions? • Do you see any further limitations? (I do!) • Do you have any different suggestion for resolution of key challenges? KEY CHALLENGE AREAS: Choosing and measuring categories Recruiting for variation and avoiding bias Assigning ‘identities’ Analysing and presenting findings intersectionally

21. Thanks to all participants and staff at: CARA LIFE HOPE GATE PLWHA working for PLWHA