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) Sex/genderSexualityClassCitizenshipRace/ethnicit y MaleGay/LesbianProfessionalUK BornWhite British FemaleBisexualSkilledUK Resident /Refugee White Other TransgenderHeterosexualElementaryWork/Study Visa Black African MSMStudentAsylum seeker Black Other Unemployed (current) FAS; HLTR; Disc LTR Minority Ethnic Unemployed (long term) FAS (no right of appeal); Over-stayer; Undocum. Other

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) Sex/ Gender SexualityClassResidency/ Citizenship Race/ Ethnicity MaleGayMiddleFull UKBlack African FemaleHeterosexualWorkingMigrantBlack Other WelfarePrecariousWhite Other Destitute?Non -citizenWhite British Minority Ethnic

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