This is one of the first studies to focus on adolescents’ experience of participating in a care and treatment clinic for HIV in Tanzania. Several ethical concerns were noted. First, adolescents sought autonomy and some control in decision making about their health and well-being, but many found this difficult to do because such decisions were made before they became aware of their HIV status. Second, some adolescents felt shame, stigma, and worthlessness associated with their HIV status. Third, delays in disclosure of HIV status to adolescents resulted in some adolescents neglecting ART and a worsening of their health status. Disclosure to others was regarded as both beneficial and harmful.
Individual autonomy is an important ethical requirement for everyone, including adolescents in low- to middle-income countries (24). The results of this study, however, show a lack of adolescents’ involvement in decision-making about HIV testing as well as enrollment in ART. Guidelines to involve adolescents in their testing decision vary from one practice setting to another (30). In South Africa, adolescents from age 12 onward can consent for HIV testing (31), while in Tanzania the age for consent for HIV testing is 16 (32). Most adolescents in our study were tested at a young age and were not able to deliberate about testing for HIV and its implications. Parents make decisions in their children’s best interest, and findings from this study reveal that adolescents appreciated their parents love for them. However, our participants also wanted to make decisions for themselves. Despite being HIV tested and enrolled in care in the CTC without their consent, adolescents adhered to ART because they believed it improved their health. Hosek and colleagues conducted a qualitative inquiry and found similar results with U.S. adolescents, who adhered to their medication because they wanted to stay healthy and alive (33). Six adolescents in our study were tested between the ages of 12 and 16; however, they were not involved in decision to test and enroll them in care. These adolescents felt that they had been ignored, but they adhered to medication for their own health benefit.
Despite their perception of a lack of autonomy, all adolescents who participated in this study adhered to HIV care and treatment and attended the CTC. Parental support was a key factor in reminding adolescents to attend the clinic; emotional and economic support were also among the issues mentioned by adolescents as a factor in adherence to ART. This finding is similar to findings of a study conducted in Brazil (34). In that study, adolescents living in a stable family structure had better adherence to medication and were less likely to face ethical challenges like stigma and discrimination. This finding is also supported by other studies (35).
Participants also reported feelings of personal shame that they are living with HIV, which resulted in neglecting appointments and in not taking their ART on time. Self-stigmatization and feelings of worthlessness were among the individual factors reported by our study participants as reasons for poor adherence to medication. A similar study conducted with adults in Northern Tanzania reported that stigma and involuntary disclosure (i.e., learning about one’s HIV status accidentally) were associated with poor adherence to ART (36). Another factor mentioned by adolescents was tight school schedules, which led to forgetting their medicine or even ignoring ART when they were hungry and busy. ART side effects, such nausea, dizziness, and drowsiness, can affect adolescents in their day-to-day activities; however, adolescents’ life depends on consistent adherence to ART. The adolescents in our study knew that they had no choice to decline medication if they wanted to survive.
Disclosure of HIV status is an important step in adolescents’ adherence to medication and their growth and development (37). Unfortunately, disclosure of HIV status to adolescents is delayed in many situations (38). The current study found that adolescents were left wondering why they were taking medicine daily. For some study participants, nondisclosure resulted in poor adherence to medication and deterioration of their health status. Other studies have shown the same result (17, 39).
Adolescents’ HIV clubs have been found to improve adherence to medication, especially for those ages 15 to 19 (40). In adolescent clubs, they are taught about secondary HIV infection and prevention of infection by being responsible and not infecting their partner (41). Some adolescents in our study reported attending such clubs before their HIV status was disclosed to them—that is, some “got the hint” that they were HIV positive before being told. Uninformed adolescents may wonder why no one is telling them. Knowledge of one’s HIV status is challenging to adolescents, and they may become sad and experience self-stigma, as our data show. But after a period of time, they may learn to live with HIV and assume the responsibilities associated with their disease.
Some of our adolescent participants informed their teachers about their HIV status. Such disclosure helped adolescents keep clinic appointments without worries or fears of missing school. Friends also supported sick adolescents when they knew they had HIV, which also improved their adherence to their medication. In some instances, adolescents informed their siblings, who also conferred emotional support whenever they needed it (42).
Disclosure is an ethical dilemma, because despite its benefits it may also lead to stigma and discrimination, which are physically and emotionally harmful for HIV-infected adolescents. Some participants were ostracized by their relatives because of their HIV status. Some participants also reported being bullied and segregated from others. Disclosure to their sexual partners led to broken relationships and fears of not being able to become engaged again. HIV-infected individuals have a duty to warn sexual partners and to give their partner the chance to make an informed choice. But this may result in stigma and discrimination against the HIV-infected individual (43).
The health care facility environment and adolescent friendliness are among the factors that facilitated adolescents’ decision to attend the HIV CTC. This finding is also supported by other studies (44). Disrespectful providers discouraged CTC attendance. This finding is similar to a finding in a 2014 study in which participants reported clinic friendliness as important to adolescents (45). This included flexibility in the days and times of the clinic opening that did not collide with school activities. In that study, service providers with good language skills and infrastructure that protected adolescents’ privacy and confidentiality in terms of their HIV status were also important. In the current study, the time that adolescents spent waiting for their service and providers’ attitudes were also among the main motivators for adolescents to come to the hospital clinic.
Finally, participants also mentioned adolescents’ HIV clubs as one of the health care organizational factors that helped them adhere to ART. HIV clubs provide services that include reproductive health services, ART adherence counselling, and an entrepreneurship course. This type of support system can help adolescents living with HIV combat their life challenges with hope and enthusiasm. Other studies have shown teen clubs to be helpful in adolescent retention in HIV care and ART (41). More research on the benefits and challenges of this type of adolescent support is needed.
Limitations
There were several limitations associated with this study. First, the study interviewed individuals who agreed to participate. This may have created a selection bias, and those who chose not to participate may have different concerns not readily addressed in this study. These adolescents may have been uncomfortable discussing their views on parental authority versus adolescent autonomy in decision making for HIV services, on HIV disclosure to others and sexual partners, and on health care workers and the hospital environment in general. To address this limitation, however, the adolescents were told that the researcher would keep their information confidential. In addition, the interviews were conducted in a private room where adolescents were comfortable and away from any outside influences. Generalization of findings from this study is limited to the population of interest, because it was conducted with adolescents at one hospital clinical in Tanzania. Future research should examine these issues at other types of clinics and with other adolescents, parents, and providers across different regions of the country. Finally, the smaller sample size limits generalizability. However, the qualitative nature of the study provides significant insights, and the greatest strength of a qualitative study is the depth and richness of exploration and description it offers (46).