Stigma and serostatus disclosure within partnerships in four African countries: a mixed methods approach Hardon A, Gomez GB, Vernooij E, Desclaux A, Wanyenze RK, Ky- Zerbo O, Kageha E, Namakhoma I, Kinsman J, Spronk C, Meij E, Neuman M, Obermeyer C Universiteit van Amsterdam Amsterdam Institute for Global Health & Development Washington DC, 25 July 2012

1 A prerequisite for implementation of prevention guidelines for serodiscordant couples is that partners know each other’s status. Rates of disclosure within countries differ by ethnicity, gender and age. Fear of enacted stigma – including experiences of violence, abandonment and divorce – negatively affects partner disclosure rates. Our aim was:  to explore the determinants of disclosure to partners in four countries in sub-Saharan Africa, integrating data from qualitative and quantitative arms of the MATCH study Background: HIV and disclosure

2 A survey among clients of health facilities in the capital region and one rural province/district in each country ( ). Health facilities: (1) integrated facilities which included hospitals and primary care facilities where VCT was provided along other medical services; (2) antenatal clinics and other facilities offering care to pregnant women; and (3) stand-alone facilities for VCT. 3,659 participants were administered face-to-face questionnaires 102 in-depth interviews with key informants recruited through support groups for HIV-positive individuals. 20 focus group discussions with support group members. Method: MATCH study Ref: Obermeyer C, et al. (2012 ) Do consent, confidentiality and referral differ by mode of providing HIV testing? A comparative analysis in four African countries. PloS Medicine (under review).

3 Method: participant selection Declined to discuss testing status, n=15 Never had an HIV test, n= 1,088 Missing value/don’t know, n=3 HIV test before 2007, n= 357 Missing date for recent test, n=9 Do not know their status, n= 23 Decline to answer, n= 4 Missing value, n= 14 HIV negative status, n= 1,507 Indeterminate, n= 9 Missing value, n= 29 Know their HIV+ status <=1 week, n= 94 Missing value, n= 3 Never married, n= 69 Divorced/separated, n= 74 Widowed, n= 81 Married or cohabiting, n= 280 Total participants, n=3,659 Ever had an HIV test, n= 2,553 Know their HIV+ status for >1week, n= 504 HIV testing 2007 or after, n= 2,187 Know their HIV status, n= 2,146 HIV positive status, n= 601

4 Hypotheses derived from qualitative analysis: Narratives of HIV-positive individuals contained in responses to the survey’s open-ended questions: case summary. In-depth interviews and focus group discussions Determinants included in the quantitative analysis: 1.Individual: gender, age, education, presence of symptoms requiring HIV test or treatment at most recent test 2.membership to support groups 3.Stigma: Self stigma, inner feelings of worthlessness and/or guilt. Enacted stigma, experiences of verbal abuse and ridicule, physical assault, ostracism from social life, abandonment by spouses, partners and families, disinheritance, job loss and denial of healthcare due to being HIV-positive. Bivariable and multivariable logistic regression models were developed. Method: analysis

Results: quantitative (I) All participants reported disclosing their serostatus to someone Disclosure to partners: 60.9% [95%CI ]

6 Results: quantitative (II) VariableuOR [95% CI]aOR [95% CI] Genderfemale111 male2.69 [ ]***2.14 [ ]*1.55 [ ] Age1.03 [ ]*1.04 [ ]*1.04 [ ] Education<primary11- >=primary2.80 [ ]***1.44 [ ]- Presence of symptoms requiring treatment no11- yes0.42 [ ]**0.56 [ ]- Self-stigmano11- yes1.65 [ ]0.73 [ ]- Enacted stigmano11- yes0.48 [ ]*0.59 [ ]- Membership to support groups no111 yes0.24 [ ]***0.31 [ ]***0.27 [ ]*** Country of recruitmentBurkina Faso1-1 Kenya5.10 [ ] *-4.43[ ]* Malawi0.20 [ ]***-0.20 [ ]*** Uganda1.38 [ ]-1.11 [ ]

7 Reasons for disclosing to partners vary: Protection of their partner from becoming infected Healthcare needs Quality of their relationship Trust and a motivation to adopt prevention behaviours were related to disclosure Fear of enacted stigma remains an important reason for non-disclosure to partners Reported consequences of disclosure: acceptance of a partner’s HIV status is a process of gradually coming to terms with the result; the initial reaction was often one of shock and disbelief but most partners grew more supportive over time. Results: qualitative

8 People living with HIV disclose to people in their support network. However, disclosure within the partnership is less common. We found a relationship between stigma and disclosure to partners that is dependent on the setting (the country of recruitment). It was generally reported in the interviews that fear of enacted stigma remains an important reason for non-disclosure to partners. Membership to a support group was also associated with non-disclosure. Planning for prevention programs: engagement and integration of support groups, as they provide a safe space for the discussion of the prevention benefits of early disclosure and early initiation of ART in serodiscorant couples. Conclusions

Thank you The MATCH project was supported by a grant from the National Institutes of Health (5 R01 HD ), to Professor Carla Makhlouf Obermeyer currently at the American University of Beirut. Acknowledgements: All my co-authors and in particular the participants and clinic staff of the MATCH study.

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