Bakeera-Kitaka Sabrina, Siu Godfrey,Dhabangi Aggrey,Andrew Kambugu and Caitlin Kennedy

1. Lived experiences, perceptions and treatment disclosure by HIV infected adolescents at the Transition Clinic of Mulago Hospital, Kampala Bakeera-Kitaka Sabrina, Siu Godfrey,Dhabangi Aggrey,Andrew Kambugu and Caitlin Kennedy TUAX0103,AIDS 2010

2. As effective and sustained HIV treatment becomes more accessible for young people, many will be able to survive, attend school and engage in social activities as their life becomes ‘normalised’. Background

3. Adolescence is a challenging time even without the additional burden of coping with HIV infection and disclosure. ...

4. Background • HIV sero status disclosure to parents, partners, and peers is psychologically challenging for HIV-positive young people • Other challenges include coping with HIV illness and coping with the fear of death.

5. Background • Most studies of adolescents and HIV sero status disclosure focus on: • whether, how and when to disclose toadolescents their HIV diagnosis. • Fewer studies have examined HIV sero status disclosure byadolescents who know they are infected with HIV.

6. Objectives • We explored the HIV sero status and treatment disclosure practices and concerns of young people living with HIV in Uganda • And the extent to which they are satisfied with current norms around HIV sero status and treatment disclosure.

7. The Transition Clinic • The Transition Clinic at the IDI was started in June of 2008 to enable young people living with HIV/AIDS receive comprehensive care while allowing them to transit into adult care without stigma and discrimination. • To date they have registered 760 clients aged 16-24 years, • Majority (68%) are horizontally infected and have transited 55 clients into the adult clinic

8. Methods • We used an open ended qualitative design which allowed for exploration of commonalities and variations in experiences without preconceived notions. • We conducted 20-individual interviews, and 2-focus group discussions • We defined ‘disclosure’ as initiating ways of revealing HIV sero status and treatment to other people.

9. Inclusion criteria Individuals were included if they were 16-21 years old, were aware of their HIV-positive status, and were currently taking ART. They were excluded if they were in poor health or were judged to be unable to participate in interviews.

10. Results 10 males and 10 females participated Students, out-of-school youth, a market vendor, a hair stylist, parents, and unemployed youth were all represented in our small sample. The majority lived in challenging economic and social circumstances.

11. HIV sero status disclosure • Participants in the female FGD understood disclosure as a relationship involving communication and the various ways in which someone infected with HIV conducted oneself. • “[…] disclosure is the way we relate with others who do not have the [HIV] virus” (Female FGD).

12. Public affair or family secret? • Respondents differed in the level of disclosure that they desired • Overall, most respondents considered their HIV sero status and treatment information to be a private affair, but many felt that disclosure to family members was unavoidable • ‘...so HIV should remain a family secret...’

13. Positive aspects of disclosure Many respondents believed that disclosure was a pivotal step in their lives All respondents described how beneficial disclosure had been to them , especially in terms of the support they have received from their caretakers and other family members including love, care, financial support (e.g. transport to the Clinic) and reminders to take their medication.

14. Disclosure strategies Young people employed various strategies to disclose their HIV status and treatment to others. Respondents also suggested that disclosure is a skill developed over time as they live their lives with HIV. The adolescents often ‘joked’ with friends to ‘test the waters’, before they disclosed

15. Implicit disclosure • Taking HIV medications openly, displaying ART treatment documents, and frequently visiting the IDI at Mulago hospital were thought to be implicit ways of disclosing. • “It (confidentiality) is not easy for me because it is the treatment that reports me. Even when a visitor comes, it is the treatment that reports me because I can not hide when taking the treatment” (Female interviewee).

16. Other sources of disclosure • Nearly all the interviewees stated that they knew or suspected that a third party who knew about their HIV status had already disclosed this fact to others. • Another person may have found out because • They knew the adolescent to be ill • They often visited a particular health unit • They were associated with a known HIV/ AIDS treatment provider.

17. Acceptable 3rd party Persons cited in third party disclosure , whose role appeared to be more acceptable and appreciated, were medical providers, counsellors, very trusted family members, and church leaders

18. Barriers to disclosure • A few respondents suggested that they wanted to disclose , but they were prevented by their caretakers. • “Whenever they (relatives) would come to visit us, Mum would tell me not to tell them, saying they would laugh at me. She would ask me to tell some and not tell others” (Female interviewee).

19. Barriers to disclose • Others, fearing their present lack of financial/ livelihood independence, feared to disclose • “I am going to keep on confusing them till when I am free, when I don’t depend on any one; when I no longer ask someone for help, for example 500 shillings for water” (Male Interviewee).

20. Power, autonomy, vulnerability, and trust Adolescents overwhelmingly yearned to be in full control of all aspects of disclosure of their HIV serostatus and treatment. Most respondents said they themselves and no one else should have the responsibility of disclosing their status to other people. As one respondent said, “The victim should make that decision to disclose.”

21. Partner disclosure Contrary to the impression that young people always wish to take personal responsibility in matters of disclosure, Many interviewees revealed that disclosure particularly to partners is challenging and may require assistance. They emphasised how hard it was to disclose to partners, citing fear of rejection or loss of respect and care as key challenges.

22. Stigma and disclosure Respondents were aware of HIV-related stigma in their communities, and the fear of experiencing stigma and discrimination – along with the associated problems of rejection, abandonment, abuse, and ostracism As one respondent said, “It makes me cry, and worried to think that everyone knows I am infected.” (Female interviewee)

23. Protecting loved ones from distressing information Several adolescents talked about not wanting to subject their loved ones to psychological torture and viewed non-disclosure as a mechanism of protecting their carers. In particular, disclosing to a parent appeared to be very painful, as described by this respondent:

24. ‘Protecting parents’ “If you tell your parents who least expect you to be infected, they can get shocked and they die because all hopes he had in you have been halted. You know when the charcoal is on stove you know it is there and that it will one day be used, but when you put in fire then you know it is sure going to burn up. So instead of causing him such death you rather let him die without knowing anything” (Male FGD).

25. Conclusions • Our findings reinforce the idea that HIV disclosure is a process, not a one-time event. • It is clear that adolescents anticipate both positive and negative outcomes of disclosure, including financial, social, and emotional support, but also including stigma, discrimination, and rejection.

26. Recommendations • There are various patterns and strategies for disclosure among adolescents living with HIV • These patterns need to be better understood in order to improve HIV care and treatment approaches for adolescents and ultimately assist these young people in coping with their HIV status and communicating about these issues with important people in their lives.

27. Acknowledgements • The Research Department of the IDI for their support • The co-investigators of the study • The research assistants who worked so tirelessly: • A.Dhabangi, Julian Nkuraija, HellenNakku,& Mrs.Stella.B.Ssali for the data transcription. • Last but not least, all the participants of this study.