Qualitative inquiry into adolescents’ experience of ethical challenges during enrollment and adherence to antiretroviral therapy (ART) in Temeke Regional Referral Hospital, Tanzania

Abstract

Background Adolescents living with human immunodeficiency virus (HIV) experience 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 authority over their children, but during adolescence there is an increasing desire for independence. The aim of the study was to explore adolescents’ experience of challenges identified by adolescents ages 10–19 years attending HIV care and treatment at Temeke Regional Referral Hospital in Tanzania. Methods An exploratory descriptive qualitative design was employed in the HIV Care and Treatment Centre (CTC) in the Out-Patient Department at the Temeke Regional Referral Hospital in Tanzania with adolescents living with HIV who were 10–19 years of age. A total of 22 adolescents participated in semi-structured face-to-face interviews after parental consent and adolescent assent were obtained. Participants were interviewed about their participation in decisions to be tested for HIV and enrolled in the CTC, concerns surrounding disclosure of their HIV status to the adolescent or to others, stigma and discrimination, and the effect of these challenges on their adherence to medication. All interviews were audio-taped, transcribed verbatim in Swahili, and back-translated to English. Data analysis included both inductive and deductive thematic analysis. Results Qualitative themes identified included lack of participation in decisions about HIV testing, challenges to enrollment in 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 of HIV status to the adolescent were identified concerns, leading to poor adherence to ART among adolescents. Disclosure to others, especially teachers, helped adolescents at school to take their medication properly. Disclosure to others led to stigma and discrimination for some adolescents. More research is needed to better understand the role of disclosure and its benefits and challenges for HIV-positive adolescents in Tanzania.

Healthcare teams' ethical obligations towards care of adolescents' living with human immunodeficiency virus disease

“…Findings from other studies confirm that the informed consent process in HIV services for adolescents raises several dilemmas, including the adolescent's insufficient capacity to make life decisions, the adolescent's economic dependency on others and the healthcare team's insufficient familiarity with laws and policies of adolescent involvement in their own care (Ho et al, 2005 ; Joseph et al, 2022 ). In this situation, healthcare teams have obligations to make sure that adolescents under their care understand the information given to them in the informed consent or assent process and the limits of confidentiality in certain cases (Pampati et al, 2019 ).…”

“…Depending on the age of the adolescent, informed consent requires the healthcare team's assessment of the adolescent's capacity for autonomous decision-making (Michaud et al, 2015;WHO, 2021). Adolescents have the right to information, although each adolescent is different in their level of maturity and what their worries might be with an HIV diagnosis, as stipulated in the International HIV/AIDS Alliance Good Practice Guide (Armstrong et al, 2017) Findings from other studies confirm that the informed consent process in HIV services for adolescents raises several dilemmas, including the adolescent's insufficient capacity to make life decisions, the adolescent's economic dependency on others and the healthcare team's insufficient familiarity with laws and policies of adolescent involvement in their own care (Ho et al, 2005;Joseph et al, 2022). In this situation, healthcare teams have obligations to make sure that adolescents under their care understand the information given to them in the informed consent or assent process and the limits of confidentiality in certain cases (Pampati et al, 2019).…”

“…This design was appropriate because little is known about the healthcare team and how they interact with HIV‐positive adolescents who attend a CTC in Tanzania and any challenges they may experience in their roles. This study was part of a larger study on the ethical issues of HIV care and treatment for adolescents in Tanzania (Joseph et al, 2022 ).…”

“…Open coding was also conducted on printed hardcopies before uploading them to the software. A process to support the rigour of the qualitative data was followed, as outlined by qualitative researchers (Braun & Clarke, 2006 ) and also reported elsewhere (Joseph et al, 2022 ). This process includes a series of steps that help to identify themes within the data.…”

Parents’ perceptions of ethical issues in adolescents’ HIV care and treatment at Temeke Regional Referral Hospital, Tanzania

“…[11] This study was part of a larger study on adolescents' experience of ethical challenges during enrolment in and adherence to ART in Temeke Regional Referral Hospital, Dar es Salaam, Tanzania. [12] Temeke Regional Referral Hospital was also the setting for the current study. This is a large urban hospital that conducts CTCs for adolescents every Saturday, generally seeing 20 -30 adolescents per day.…”