TY - JOUR
T1 - Young people with HIV attending a transition clinic in Kampala, Uganda
T2 - An exploratory study of social context, illness trajectories, and pathways to HIV testing and treatment
AU - Siu, Godfrey E.
AU - Kennedy, Caitlin E.
AU - Bakeera-Kitaka, Sabrina
N1 - Funding Information:
We thank the study participants for their time and views. We also thank Dr. Aggrey Dhabangi and Ms. Helen Najjuma for conducting the interviews, Mr. Julian Nkuraija for facilitating recruitment of participants, and Ms. Stella B Ssali for transcribing the data. Special thanks to the Sewankambo Research Scholarship and the Infectious Diseases Institute for financial support, and the Child Health and Development Centre (CHDC) and Medical Research Council, Entebbe, for providing the academic environment that enabled us write this paper. We also thank Ms. Ping Teresa Yeh for editorial assistance.
Publisher Copyright:
© 2016 Elsevier Ltd.
PY - 2016/6/1
Y1 - 2016/6/1
N2 - Despite global improvements in antiretroviral treatment (ART) access, little is known about how young people with HIV initially enter treatment. This article explores young people's trajectories towards HIV treatment: how, when, and with whom testing and treatment decisions are made and the role of adolescents themselves in this process. In 2009, we conducted 20 in-depth interviews with male and female adolescents attending the HIV/AIDS Transition Clinic at the Infectious Diseases Institute in Mulago Hospital, Kampala, Uganda. Interviews were audio recorded and transcribed. The authors read the transcripts, developed codes and synthesized themes. Though many respondents were likely infected with HIV at birth, most tested and learned their serostatus as teenagers after repeated illnesses or perceived risky sexual behaviour. Young people encountered both obstacles and opportunities in their HIV treatment-seeking efforts. Caregivers' decisions and actions or an absence of specialist HIV services and skills caused delays in ART enrolment. Health workers played an important role in referral and connecting young people to care. The agency of young people themselves, once they realised that their illness could be HIV, was also crucial in ensuring prompt HIV testing and treatment-seeking. Young people who believed they were infected through mother-to-child transmission saw themselves as innocent victims and appeared motivated to combat HIV, while those suspecting sexual transmission found disclosure to parents difficult and described feelings of guilt, regret, and self-blame. Understanding pathways to HIV testing and treatment can inform care and support services for young people in Uganda. In particular, earlier disclosure may facilitate positive coping strategies and engagement in care.
AB - Despite global improvements in antiretroviral treatment (ART) access, little is known about how young people with HIV initially enter treatment. This article explores young people's trajectories towards HIV treatment: how, when, and with whom testing and treatment decisions are made and the role of adolescents themselves in this process. In 2009, we conducted 20 in-depth interviews with male and female adolescents attending the HIV/AIDS Transition Clinic at the Infectious Diseases Institute in Mulago Hospital, Kampala, Uganda. Interviews were audio recorded and transcribed. The authors read the transcripts, developed codes and synthesized themes. Though many respondents were likely infected with HIV at birth, most tested and learned their serostatus as teenagers after repeated illnesses or perceived risky sexual behaviour. Young people encountered both obstacles and opportunities in their HIV treatment-seeking efforts. Caregivers' decisions and actions or an absence of specialist HIV services and skills caused delays in ART enrolment. Health workers played an important role in referral and connecting young people to care. The agency of young people themselves, once they realised that their illness could be HIV, was also crucial in ensuring prompt HIV testing and treatment-seeking. Young people who believed they were infected through mother-to-child transmission saw themselves as innocent victims and appeared motivated to combat HIV, while those suspecting sexual transmission found disclosure to parents difficult and described feelings of guilt, regret, and self-blame. Understanding pathways to HIV testing and treatment can inform care and support services for young people in Uganda. In particular, earlier disclosure may facilitate positive coping strategies and engagement in care.
KW - Adolescents
KW - HIV
KW - Treatment pathways
KW - Uganda
KW - Young people
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U2 - 10.1016/j.childyouth.2016.03.015
DO - 10.1016/j.childyouth.2016.03.015
M3 - Article
AN - SCOPUS:84962322569
SN - 0190-7409
VL - 65
SP - 9
EP - 16
JO - Children and Youth Services Review
JF - Children and Youth Services Review
ER -