Strategies of Clients in Disclosing HIV Test Results: Gender Dimensions in Uganda Presentation for the XVI International AIDS Conference, Toronto Canada Xavier Nsabagasani 1, Nosa Orobaton 1, Samson Kironde 1, Stan Yoder 2, Elizabeth Nabeta 3, Lois Kateebire 1, Naomi Nakamatte 1 1 Uganda Program for Human and Holistic Development, 2 MACRO International, 3 AIDS Information Centre

Institutional Collaboration  JSI/UPHOLD commissioned the study  AIDS Information Centre (AIC) supported UPHOLD in selection of respondents and data analysis  Macro International provided technical assistance in study design and implementation  USAID provided funding

Background - I  Uganda’s experience and recorded efforts on the prevention of HIV pandemic  HIV sero-prevalence in Uganda in 1990 was about 15% among adults years old  HIV prevalence in 2004 among the same population was 6.4%  The percentage of adults tested for HIV in 2004 was 11% for men and 13% for women (Source: Ministry of Health, ORC-Macro, 2006)

Background - II  Since the 1990s the AIDS Information Centre (AIC) has served as the leading VCT service provider (over 1.38 million clients to date)  Since 1980s, The AIDS Support Organization (TASO) has provided care and support services for HIV+ positive clients  The Government of Uganda created VCT centers as a means of HIV prevention and access to care  Currently more than 420 public and private facilities providing VCT in Uganda

 Social relations affect going for HIV testing  Social situations affects ability to disclose HIV test results  The counseling process enables individuals to disclose their test results  Men and women have different concerns about getting tested and about disclosing results Study Assumptions

Objectives of the study - I To understand :  The individual experiences in coming for an HIV test and being counseled  How people considered revealing their own HIV test results to others  The needs of VCT clients for social support after HIV testing

Objectives of the study - II To discover :  The role of circumstances in deciding to get tested for HIV  The role of social relations in disclosing HIV results to others To recommend:  How UPHOLD can assist districts/CSO provide social support to clients

Major methodological challenges  How to identify respondents who have just been tested for HIV  How to collect information on social relations and social situations  Sensitivity of subjects to be discussed with respondents: sex and HIV/AIDS status  Number of respondents to interview

Methodological approach  Extended unstructured interviews with VCT clients (topic guides in outline form)  Respondents interviewed twice: immediately after getting the test results and again a month later in their homes  Interviews (105) were recorded, transcribed in the local language and translated into English  Responses were analyzed for content and recurrent themes

 Two districts: Mbarara and Kamuli in Western and Eastern Uganda respectively  All Mbarara respondents were from the AIC site  Kamuli clients came from 2 sites:  A government Health Facility  A JSI/UPHOLD supported faith-based Hospital Study Sites

Clients by Sex & Marital Status SingleMarriedWidowedSeparatedTotal Male Female Total Marital Status Sex

Respondents by sero-status Sero-statusNumber of respondents HIV positive73 HIV negative31 Unknown1 Total105

The expression of gender relations and disclosure  Marriage magnifies gender [single, married, divorced/widowed]  Social situations of respondents: – living situation – education – family dynamics – economic conditions

Approaches by unmarried respondents  Some did not share their results with the partners even when the results were negative  Some came with partners, tested together, and shared results  Some first tested and later asked their partners to also come for a test  They did not want to take chances, so they went for an HIV test

Unmarried: Commitment to disclosure Both male and female youth strongly asserted that if there is no commitment to share the results the relationship would be dropped: “ there was a girl I was dating and we had agreed to go for a test and later on tell each other the results. She did not tell me her results so I decided to drop her” (28 year old youth)

Married men’s concerns Men who were not overtly sick-looking chose not to share test results with their wives, to avoid rumors, blame and disruptions in family relationships “No, for me I don’t trust women, they spread rumours, even if it is something for the home. Outside she will tell her closest friend and by the way, a woman will not give you proper advice” (Adult sero-positive male)

A strategy to disclose Jack  42 years old and married  He has tested twice and turned out positive on both occasions  Both occasions he did not disclose to his wife for fear of rejection and desertion  Through his sister and his counselor he persuaded his wife to test so that they can be counseled together

Married women's concerns  Critically-ill women feared their husbands might blame them for unilaterally taking the test, thus implying their husbands were guilty of "misbehavior"  Some women who had lost trust in their husbands also saw no value in sharing their status with their husbands

A strategy to disclose Jenina  Age 36 with three children  Her husband was often sick  Went for a test and was found positive  She had difficulties in revealing to this to her husband but she eventually told him. He confessed that he had also tested earlier but had feared to tell her

Married respondents who disclosed to spouse MenWomenTotal Disclosed13 (6 HIV+) 8 (5 HIV+) 21 (11 HIV+) Did not disclose 9 (9 HIV+) 12 (11 HIV+) 21 (20 HIV+ ) ) Total22 (15HIV +) 20 (16 HIV+) 42 (31 HIV+) Gender Disclosure Status

Widow(er)s and divorced  Widows remain single while widowers tend to soon remarry  Situations very diverse because of their living conditions: with relatives, friends, etc.  Most of them had lost their spouse to HIV  Some were very sick when they tested

A strategy to disclose Peninah  A 41 year old widow  For her livelihood, she keeps domestic animals, manages a small shop selling food items. She also sells local beer  She blamed the people has a grudge against people in the community who spread rumors about her  She is often ill, and so she went for testing. She disclosed to her friend also a widow

Conclusions  Marriage emphasizes the expression of gender relations  Concerns of young men and women were very similar in relation to HIV testing  Women were worried about being blamed for getting tested, while men were more worried about who would care for them  In disclosing to spouses, people were very concerned about family disharmony, immediate needs, and the overall family situation

Recommendations  Interventions aimed at increasing disclosure among couples are needed but have to address individuals within their own social situations  Disclosure counselling should be an entry point for programmatic care and support interventions  Counsellors need training to anticipate different needs and concerns among men and women  Interventions to encourage young men and women to test are sorely needed to take advantage of their interests in preventing HIV

Acknowledgments We would like thank  Our field workers and respondents  Ministry of Health  The AIC staff and management  USAID  Macro International