The process of HIV status disclosure to HIV-positive youth in Kinshasa, Democratic Republic of the Congo1

1. The AD Research Group: T. Badinga, N. Kutumbakana, O. Daiku, M. Ilaka, J.S. Kalengi Kukemfuka, J. Kayumba Baye, S. Callens, A. Van Rie and E. Okitolando: Kinshasa, The Democratic Republic Of The Congo, Email: [email protected]

Abstract

As access to HIV/AIDS treatment increases in sub-Saharan Africa, greater attention is being paid to HIV-infected youth. Little is known about how HIV-positive youth are informed of their HIV infection. As part of a larger formative study informing a treatment program in Kinshasa, Democratic Republic of the Congo, semi-structured interviews were conducted with 19 youth (10–21 years) who had previously been told their HIV status and 21 caregivers who had disclosed the youth's HIV status to the youth. Questions explored youth's and caregivers’ experiences of and immediate reactions to disclosure. Youth's median age at disclosure was 15 years old, with a range of 10–18 years based on caregiver reports (n=21) and from 10–19 years based on youth reports (n=18). The most common reasons spontaneously given for disclosing were the child's adherence to their treatment regimen (5/16), the need of the child to protect her/himself or stay healthy (5/16), the child's increasing age (4/16) and so that the child would know why they are suffering (3/16). Most youth (16/19) were surprised to learn of their diagnosis; 50% (8/16) wondered about the infection's origins. A large majority felt that it is better for them to know their HIV status (88%; 15/17). HIV care and treatment programs must be prepared to address the psychosocial needs of youth and their caregivers during the disclosure process.

Keywords:

• HIV/AIDS
• disclosure
• children
• sub-Saharan Africa
• qualitative research

Acknowledgements

We wish to thank: Karen Hawkins Reed, Kashamuka Mwandagalirwa and Vera Melotte for their overall support in carrying out project activities; Sandra Duvall for her assistance in reviewing and translating study instruments and training materials; Sarah Brooks for help with data analysis; the different organizations who provided their assistance and support in recruitment of participants and space for interviews; and the study participants for sharing their thoughts and experiences with us. The study received funding from US Centers for Disease Control and Prevention, Global AIDS Program, (GAP) U62/CCU422422.

Notes

1. The AD Research Group: T. Badinga, N. Kutumbakana, O. Daiku, M. Ilaka, J.S. Kalengi Kukemfuka, J. Kayumba Baye, S. Callens, A. Van Rie and E. Okitolando: Kinshasa, The Democratic Republic Of The Congo, Email: [email protected]

Additional information

Notes on contributors

A. Corneli†

†Affiliation at the time of study. Dr. Corneli is currently at Family Health International, Research Triangle Park, US, Mr. Omba is currently with World Wildlife Fund, Kinshasa, Democratic Republic of the Congo