Qualitative Inquiry of Adolescents’ Experience of Ethical Issues During Enrollment and Adherence to Antiretroviral Therapy (ART) in Temeke Regional Hospital, Tanzania

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Abstract Background Adolescents living with HIV experience ethical challenges including lack of involvement in their care as well nondisclosure of HIV status which leads to poor adherence to antiretroviral therapy (ART). Parents have the authority over their children but during adolescence there is increase sense of independence. Whose decision should be followed in case of disagreement. Aim of the study is to explore experience of ethical issues identified by adolescents age 10 to 19 years attending HIV care and treatment in Temeke regional referral hospital. Methods Exploratory descriptive qualitative design was employed at Temeke regional referral hospital in Care and Treatment Centre in the Out-Patient Department with adolescents living with HIV 10 to19 years of age. A total of 22 adolescents participated in in-depth face-to-face interviews after obtaining parental consent and adolescent assent. All interviews were audio-taped, transcribed verbatim in Swahili, and back translated to English. Data analysis included both inductive and deductive thematic analysis and rigor was maintained using standards of qualitative research. Results Qualitative themes identified included: lack of participation in decisions about HIV care and treatment; issues around disclosure of HIV status, such as delays in disclosure to the adolescent and disclosure to other persons and benefits and harms of such disclosures; and factors supporting and interfering with adherence to ART, such as parental support, organizational (clinic) support and problems, and self-stigmatization and shame. Conclusion Lack of adolescents’ involvement in their care decision making and delayed disclosure are identified ethical concerns leading to poor adolescents’ adherence to ART. Early disclosure to adolescents is beneficial the same as disclosure to others especially teachers helped adolescents at school to take their medication properly. Disclosure to others apart from adolescents lead to stigma and discrimination for some adolescents.

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