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

Qualitative inquiry into adolescents’ experience of ethical challenges during enrollment and... 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 independ- ence. 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 medica- tion. 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 *Correspondence: renatha1972@yahoo.com Department of Bioethics and Health Professionalism, School of Public Health and Social Sciences, Muhimbili University of Health and Allied Sciences, Dar es Salaam, Tanzania Full list of author information is available at the end of the article © The Author(s) 2022. Open Access This article is licensed under a Creative Commons Attribution 4.0 International License, which permits use, sharing, adaptation, distribution and reproduction in any medium or format, as long as you give appropriate credit to the original author(s) and the source, provide a link to the Creative Commons licence, and indicate if changes were made. The images or other third party material in this article are included in the article’s Creative Commons licence, unless indicated otherwise in a credit line to the material. If material is not included in the article’s Creative Commons licence and your intended use is not permitted by statutory regulation or exceeds the permitted use, you will need to obtain permission directly from the copyright holder. To view a copy of this licence, visit http:// creat iveco mmons. org/ licen ses/ by/4. 0/. The Creative Commons Public Domain Dedication waiver (http:// creat iveco mmons. org/ publi cdoma in/ zero/1. 0/) applies to the data made available in this article, unless otherwise stated in a credit line to the data. Joseph et al. BMC Medical Ethics (2022) 23:22 Page 2 of 9 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. Keywords: Adolescents, Ethical issues, HIV care and treatment, Adherence to antiretroviral therapy Background Due to the adolescent’s developing capacity to under- Adolescence is defined by the World Health Organization stand, adolescence is also a time when individuals enroll as a time of transition from childhood to adulthood for in HIV care and treatment programs in Tanzania learn those persons 10–19  years of age [1]; it is also a unique about the importance of adherence to care. The HIV developmental period when capacity for decision making Care and Treatment Centre (CTC) in the Out-Patient evolves [2]. Indeed, adolescents have an increasing need Department at the Temeke Regional Referral Hospital in to be involved in making decisions related to their care Tanzania is a health care facility that provides care and and well-being [3, 4]. Parents should foster adolescents’ treatment for individuals living with HIV and AIDs; it participation in decision making that supports their abil- was implemented in 2004 [16]. Ensuring adherence to ity to make informed judgments [5]. Adolescent involve- ART among adolescents can present unique challenges. ment in their own health care decision making can create A qualitative study conducted in Canada with 34 HIV- a positive relationship between the doctor, the patient, positive young people documented their confusion and and the parent, enhancing adolescents’ satisfaction with misunderstanding of HIV treatment; some felt they had their care and trust between all parties [6]. Even though no choice about treatment, some cited disruptions to adolescents should participate in decisions that affect their lives, and some reported difficulties in adhering their health and well-being, parents have the authority to to ART [17]. Many factors may influence adolescents’ make decisions for their sons and daughters [7]. adherence to ART, including their motivations to receive When an adolescent is ill, parents and the adolescent care, the serious nature of their illness, communication may disagree about what should be done or whose deci- styles in the clinical interaction, peer support, and struc- sion should be followed [8]. Adolescents’ growing desire tural issues [18] and whether they know their HIV status for independence may lead to conflict between them [19], among other issues. and their parents or designated care givers [9]. This is Risky behavior and curiosity expose adolescents to the the case, for example, when an adolescent has a diagno- potential for unprotected sex and increased risk of HIV sis of HIV and/or acquired immunodeficiency syndrome infection [20]. In Tanzania, adolescents’ enrollment in (AIDS) and ethical issues often arise in the African set- care and treatment for HIV and AIDS is low [21]. On ting [10]. top of the low enrollment, there is also a high rate of loss Adolescence is a time when decisions may need to be to follow-up and poor adherence to medication, which made about HIV testing and/or disclosure of previously further increase HIV infection incidence and mortal- known HIV status to the adolescent. Indeed, nearly 24% ity. Thus, there is a great need to understand the chal - of the Tanzanian population in 2020 were adolescents lenges, including the ethical concerns that adolescents aged 10–19  years [11]. In 2019, 11% of Tanzanian chil- face because of their HIV status. The purpose of this dren were born with HIV infection via perinatal trans- study was to understand adolescents’ experience of their mission [12]. Many Tanzanian parents who are aware of HIV-positive challenges that influenced their adherence their infant’s HIV infection choose not to tell the young to ART among adolescents attending an HIV care and child, and instead administer daily medications through- treatment facility in Temeke Regional Referral Hospital, out childhood. There are many challenges regarding Tanzania. continued nondisclosure of HIV status to adolescents living with HIV. HIV disclosure to adolescents is often Methods surrounded by parents’ fear of emotionally distressing An exploratory, qualitative, descriptive design was used a child [13]. Some adolescents infected perinatally may to examine adolescents’ experience of HIV-positive not know their HIV status; when there is no proper dis- challenges that influenced their enrollment in CTC and closure and sex education, these adolescents may infect adherence to ART at Temeke Regional Referral Hospi- others [14]. In fact, a qualitative study at Mbagala tertiary tal, in Dar es Salaam, Tanzania. This design was appro - health facility in Tanzania found low rates of HIV status priate, first to gain knowledge concerning the challenges disclosure to children and adolescents under age 15 [15]. and ethical concerns that influence adolescents to enroll Low rates of HIV disclosure may lead to poor antiretrovi- in and adhere to treatment within the African context, ral therapy (ART) adherence and other ethical concerns. and second to describe the events and experiences of Joseph  et al. BMC Medical Ethics (2022) 23:22 Page 3 of 9 adolescents at Temeke CTC [22]. Adolescents partici- the interviews, which were conducted by research assis- pated in semi-structured interviews, as described below. tants and the PI, parents or those designated as primary care givers who were not biological parents waited out- Ethical considerations side the interview room. Saturation was achieved with 22 Ethical clearance was obtained from Muhimbili Univer- adolescents, when data analysis and review indicated that sity of Health and Allied Sciences (MUHAS) Institutional no new themes or ideas were expressed by participants. Review Board and the National Research Ethics Review The interview guide and interviews were in Swahili— Committee. Written informed consent and pediatric the national language comfortable to all participants. assent were obtained from parents with adolescents ages The average duration of each interview was 25  min. The 10–17 years [1]. Older adolescents (18- and 19-year-olds) interview guide provided open-ended questions to solicit consented on their own. participants’ descriptions of their experiences of chal- lenges and ethical concerns during CTC attendance. Data collection Participants described how such challenges influenced This qualitative study was part of a larger quantitative their enrollment in CTC and adherence to ART. Probing study to assess knowledge of ethical issues among ado- questions were asked in areas that needed more clarifica - lescents living with HIV and their parents and health care tion or elaboration. Interviews were audiotaped with par- providers. Data were collected through in-depth semi- ticipants’ consent and transcribed verbatim; transcripts structured interviews conducted in a private location were translated to English. The study was conducted in the clinic. The interview guide was developed from a from January to August 2020. Although data collection literature review of ethical issues that influence adher - was expected to be completed at the end of March 2020, ence to ART among adolescents and in consultation there was a slight delay due to the COVID-19 pandemic, with qualitative experts on the study team [23–26]. Prior but the study was able to resume in July and completed as to full data collection, a small pilot study involving four indicated. adolescents was conducted at Amana Regional Referral Hospital in Tanzania. This site was selected because it is Data analysis and qualitative rigor similar to the CTC at Temeke Regional Referral Hospi- Descriptive statistics were used to analyze participants’ tal. Minor adjustments were made to several interview demographic characteristics, including age, gender, questions for clarity. Research assistants were trained on duration of ART, age at enrollment in the CTC, and age interviews, data collection tools, and transcription before when the individual learned of his/her HIV status. After going to Temeke CTC. Research assistants were two post transcription, each transcript was uploaded to NVivo graduate students at MUHAS, and they assisted the prin- 12 software, which assisted in data coding. Immedi- cipal investigator (PI) in conducting interviews and tran- ately following the interview, open coding was con- scribing audio-taped interviews. ducted on printed hard copies of the transcript, before Parents of adolescents with an appointment at the the transcript was uploaded to the software. We used clinic were phoned by a “leader” of the adolescents to the principles of thematic analysis to explore adoles- confirm their appointments. These leaders are adoles - cents’ experience of their challenges during HIV testing, cents selected to lead others in clinic activities, and their attending the CTC, and using ART [27]. Thematic analy - role is to assist in setting appointments for their peer sis helps researchers identify and examine themes or pat- group and to schedule follow-up appointments for those terns within a particular context. who did not show up for their initial appointment. The Six steps for thematic analysis were followed [22]. PI worked with these leaders to phone adolescents who First, all transcripts were reviewed by the PI and co- were on the list for the day to come with their parents to investigator to assess validity of the data and become ask for their permission to participate in the study. On familiar with the data. Second, phrases, sentences, and arrival, the PI introduced parents to the study and asked paragraphs were organized in a meaningful way to form them if they would be interested in participating. A total codes. We used open coding; codes were developed and of 28 were approached, and six declined; five parents modified as the coding process progressed. Third, we declined on behalf of their adolescent, and one adoles- examined related codes, and codes were then refined cent personally declined. Purposeful sampling was used into categories. Some of them were collated into initial to select participants based on their age [10–19], educa- themes. At the end of this step, the codes were organized tional level (primary school, secondary school, vocational into broader themes that seemed to specifically describe education and training authority students, and university issues in adolescents’ HIV care and treatment. Fourth, students), ability to express themselves, knowledge of themes were reviewed to identify whether they were sup- their positive HIV status, and enrollment in ART. During ported by the data. Themes that were related or seemed Joseph et al. BMC Medical Ethics (2022) 23:22 Page 4 of 9 to address the same issue or concern were combined to other persons and benefits and harms of such disclo - form a single theme, and those that were not supported sures; and factors supporting and interfering with adher- by data were eliminated. Lastly, relationships among the ence to ART, such as parental support, organizational themes were interpreted and described in connection to (clinic) support and problems, and self-stigmatization participants’ responses. and shame. Several criteria were used to evaluate the trustwor- thiness of the qualitative data. First, credibility was Lack of participation in decision making enhanced, because the first author had spent time in the regarding enrollment in care and treatment of HIV field and was familiar with the setting. Second, the vari - As noted, 16 participants were tested when they were ous perspectives of the research team members, who younger than age 5 and did not have the capacity to had different degrees of familiarity with the setting, were decide to enroll in care and treatment for their HIV. included. Third, transferability was assessed, which is a Decisions about testing and enrollment were made by determination of how applicable the findings are to other their parents, mostly mothers. Regardless of who made contexts and is also a way of evaluating trustworthiness the decision about enrollment in the CTC, adolescents of the data [28]. Here, the transcripts were translated reported adhering to their medication for their own to English, and discussion of emerging themes among health benefit, as signified by the quotes below: research team members enriched the interpretation of I was born with this disease; therefore, I was enrolled the data through the balance of perspectives represent- when still very young—my mother made the deci- ing different backgrounds and qualitative expertise. sion. I take medicine by adhering to treatment These measures enhanced the credibility of the repre - because I am living with HIV, therefore, I take ART sentation of participants’ views presented here. Our in order to improve my body immunity. (Adolescent study also follows the consolidated criteria for reporting # 09). qualitative research (COREQ) recognizing and address- I was enrolled when very young—my mother decided ing the importance of the research team, study design, for me to be tested and enrolled in CTC... I do take sample size, and analysis and findings [29]. Our detailed medicine in my mother’s room. (Adolescent #01). description of the study context, selection criteria, data collection, and analytical process is complemented below Six adolescents were tested and enrolled in the CTC at an by quotations from participant interviews, which allow older age (12–16 years). This decision was made by their readers to judge the dependability of the analysis and primary care giver. These adolescents reported that they transferability of the findings. were not involved in the decision-making process and were unhappy about their lack of participation in testing Results for HIV and then enrollment in the CTC. Even though Participant demographics they were unhappy, they still took their medicine, as In the sample of 22 adolescents interviewed, ages ranged noted below. from 13 to 19, with a mean of 16.6  years. Adolescents I was tested at age 12, and I was very sick—hence not were generally evenly represented by gender, with 12 involved in the decision to test. After the HIV testing, females and ten males. From an educational perspec- disclosure was done to my grandfather, who later tive, three were in primary school, ten were in second- on informed me. I felt sad in my heart for not being ary school, five were vocational education and training asked. (Adolescent #04). authority students, one was in adult education classes, I was tested when I was 15 years, I was not involved and one was a university student. The remaining two in the decision to be HIV tested despite being in the participants had completed primary school, and both room. I felt bad because they discussed about my were employed. All participants knew their HIV status; HIV status as if I am not existing in the room…. 16 were tested at a young age (less than 5 years), and six but I did not regard it as a mistake; for me it was a were tested at age 12  years or older. Age at disclosure kind of love from my mother because through that of HIV status to adolescents ranged from 10 to 18  years I knew my health status that am living with HIV, (mean = 11.5). this helped me to start medication early. I think if I did not start medication early, I would have already Qualitative themes passed away. (Adolescent # 03). Several themes emerged from the data: adolescents’ lack of participation in decisions about HIV care and treat- This participant also added, “Adolescents have to be given ment; issues around disclosure of HIV status, such as a chance to participate in the decision making for medi- delays in disclosure to the adolescent and disclosure to cal care. I do not blame my mother for what she did, but Joseph  et al. BMC Medical Ethics (2022) 23:22 Page 5 of 9 adolescents have to participate in the matters that affect administration wrote a letter and was submitted to their life.” (Adolescent # 03). school by my brother (Adolescent # 21). My class teacher was aware about this situation, since he is the one who was responsible to give me Disclosure of HIV status to the adolescent permission to attend clinic... My parents informed Delays in  disclosure leading to  poor adherence him about my situation. (Adolescent # 04). to ART Most adolescents reported a delay in disclo- sure of their HIV status to themselves (disclosure at ages Sometimes adolescents felt that they were compelled to 10–18 years). Disclosure should take place by the time an disclose their HIV status due to school regulations and individual is 7 years old, according to national HIV guide- requirements, as shown in the quote below: lines [30]. Only my form 2 teachers know my health status. It My father gave me information about my health was a day whereby students who had problems, like status when I was eleven years old; he told me that the deaf, disabled, were explaining their problems, by now you are matured person, and you are living so the teacher said whoever knows that she/he is sick with HIV virus from your mother. I was heartbroken has to report, and being with HIV infection, I have to because I did not know what was going on, they were report. (Adolescent # 01). hiding this information. (Adolescent # 09). Some of the adolescents felt that they were HIV infected Harm of  disclosure of  HIV status of  adolescents to  oth- even before they were informed, as shown by the follow- ers Some adolescents reported being stigmatized and ing quotes: called names after HIV disclosure to others. I was told by my mother when I was twelve years My mother died when I was young, and I am liv- after asking her why am I using medicine for a long ing with my father and stepmother. My stepmother time. Through attending clubs, I suspected I may be insults me due to HIV infection and the need to go living with HIV. In clubs we were taught issues that for medicine always. She discloses my HIV status to made me know my health status. (Adolescent # 22). everyone who comes to our family, without caring for the impact of discrimination to me. I sometimes feel Nondisclosure for some adolescents resulted in poor it is better if I was not born. (Adolescent # 09). adherence to medication and deterioration of health sta- tus, as signified by the following quote: One adolescent did not feel comfortable going to univer- sity for fear of other university students knowing her HIV I refused to take medicine until I knew why I was status, as shown by the below quote. taking these medicines; at first I was told to take medicine because they accelerate growth since I was … I was selected to join a government University in so thin. My health deteriorated after stopping ART. Dodoma, which is good and cheaper, but I decided (Adolescent # 11). to nd a fi private college in Dar es Salaam for fear of colleagues finding out about my HIV status when I have to move to hostel if I have to take medicine in Disclosure of adolescents’ HIV status to others their presence. (Adolescent # 20). Benefit of  disclosure of  HIV status of  adolescents to  oth - ers Participants revealed that disclosing HIV infection to others, including friends, was helpful, as illustrated by Adolescent’s experiences that influenced the decision the below quote: to adhere to ART Parental support for  their adolescents to  adhere One of my friends at school knows my health sta- to ART Participants raised concerns about their inability tus; she helps me when I get sick. I was in a critical to attend the CTC despite understanding the importance health condition when I decided to tell her (Adoles- of ART due to cost implications, as shown in these quotes: cent # 21). It is a personal decision to come to clinic to get medi- Adolescents living with HIV disclosed their HIV status to cine, counselling on reproductive issues, and other teachers and matrons for support to take their medicine services, but I do not want to come to CTC because appropriately and without missing clinic appointments. of the cost of fare and food. (Adolescent #21). Several quotes are provided below. It costs me because sometimes I wake up without I told my teachers because I wanted them to know bus fare, sometime when I attend CTC my friends why I was not attending school sometimes; hospital are eating food, but I cannot afford to eat because Joseph et al. BMC Medical Ethics (2022) 23:22 Page 6 of 9 I do not have money to buy food. (Adolescent # Individual adolescent factors Some adolescents reported 22). self-stigmatization and blaming themselves for being HIV infected. This affected their decision to adhere to care and Adolescents needed their parents’ logistical and finan - treatment, as shown by the quotes below: cial support, such as bus fare, food, and drinks, to come to the CTC for ART and other services provided, I do hide; I hide myself a lot when taking ART including counselling, as seen in the below quotes: because I do not want anyone to know that I am HIV infected. (Adolescent # 01). My parents are supportive of my care, since I was young and suffered HIV. Many parents might have On further inquiry he reported, “I do not want people to already given up and foregone treatment, but my stigmatize my mother; she is a petty trader, and if they parents are taking care of me. (Adolescent # 05). cannot buy from her, we can suffer.” (Adolescent # 01). My father is very supportive of my care, my mother I do not want to attend clinic due to a feeling of died when I was young (Adolescent # 09). shame when going to HIV care and treatment clinic Other relatives also provided support, although some- to take medicine. (Adolescent #15). times they may fail to provide for needed care, as shown below: It is the bus fare—if it happens that those whom I Discussion am living with have no money, then I have to find This is one of the first studies to focus on adolescents’ other relatives who can help. (Adolescent # 04). experience of participating in a care and treatment clinic for HIV in Tanzania. Several ethical concerns were noted. First, adolescents sought participation and some Health care organizational factors Participants control in decision making about their health and well- reported that health care organizational factors are being, but many found this difficult to do because such important to their adherence to ART, including time decisions were made before they became aware of their spent waiting for care, availability of medicine, health HIV status. Lack of participation made adolescents feel education provided at the clinic, adolescents’ HIV clubs disappointed, but they also understood the importance (organized groups of HIV-infected adolescents with the of being treated. Second, some adolescents felt shame, aim of encouraging one another), and attitudes of health stigma, and worthlessness associated with their HIV sta- care workers. tus. Third, delays in disclosure of HIV status to adoles - I do not want to come to clinic, it is costly, I need cents resulted in some adolescents neglecting ART and a time, there are traffic jams on the way to hospital, worsening of their health status. Disclosure to others was and I miss classes at school. (Adolescent # 20). regarded as both beneficial and harmful. We delay at the hospital, there is a shortage of Individual participation in medical decisions is an medicine; living far away causes me to arrive important ethical requirement for everyone, including at the hospital beyond the time for services and adolescents in low-to middle-income countries [31]. The means that I do not get medicines. (Adolescent # results of this study, however, show a lack of adolescents’ 11). involvement in decision making about HIV testing as Health care workers are coming to work late, hence well as enrollment in ART. Guidelines to involve ado- starting clinic late—therefore, delaying us unnec- lescents in their testing decision vary from one practice essarily. (Adolescent # 22). setting to another [32]. In South Africa, adolescents from The challenge that I face is time; sometimes I take age 12 onward can consent to HIV testing [33], while in medicine late because the person who is distribut- Tanzania the age of consent for HIV testing is 16 [34]. ing cards reports late to clinic. (Adolescent # 15). Most adolescents in our study were tested at a young Initially clinic was on Saturday, but this year age and were not able to deliberate about testing for HIV I have to come on Friday; it is difficult to attend and its implications. Parents make decisions in their chil- clinic on Friday because I have classes at school. dren’s best interest, and findings from this study reveal (Adolescent # 01). that adolescents appreciated their parents’ love for them. Sometimes some doctors make annoying language However, our participants also wanted to make decisions towards patients; we stay for a long time waiting for themselves. Despite being HIV tested and enrolled for services while doctors are chatting or eating in care in the CTC without their consent, adolescents without bearing in mind that patients have other adhered to ART because they believed it improved their societal obligations. (Adolescent #07). health. Hosek et  al. [35] conducted a qualitative inquiry Joseph  et al. BMC Medical Ethics (2022) 23:22 Page 7 of 9 and found similar results with U.S. adolescents, who conferred emotional support whenever they needed it adhered to their medication because they wanted to [42]. stay healthy and alive. Six adolescents in our study were Disclosure is an ethical dilemma, because despite its tested between the ages of 12 and 16; however, they were benefits it may also lead to stigma and discrimination, not involved in the decision to test and enroll in care. which are physically and emotionally harmful for HIV- These adolescents felt that they had been ignored, but infected adolescents. Some participants were ostracized they adhered to medication for their own health benefit. by their relatives because of their HIV status. Some par- Despite their perception of a lack of involvement in ticipants also reported being bullied and segregated from decisions, all adolescents who participated in this study others. Disclosure to their sexual partners led to bro- adhered to HIV care and treatment and attended the ken relationships and fears of not being able to become CTC. Parental support was a key factor in reminding engaged again. HIV-infected individuals have a duty to adolescents to attend the clinic; emotional and economic warn sexual partners and to give their partner the chance support were also among the issues mentioned by ado- to make an informed choice. But this may result in stigma lescents as a factor in adherence to ART. This finding is and discrimination against the HIV-infected individual similar to findings of a study conducted in Brazil [36]. In [43]. that study, adolescents living in a stable family structure The health care facility environment and adolescent had better adherence to medication and were less likely friendliness are among the factors that facilitated ado- to face challenges, such as stigma and discrimination. lescents’ decision to attend the HIV CTC. This finding This finding is also supported by other studies [37]. is also supported by other studies [44]. Disrespectful Participants also reported feelings of personal shame providers discouraged CTC attendance. This finding is that they are living with HIV, which resulted in neglect- similar to a finding in a 2014 study in which participants ing appointments and in not taking their ART on time. reported clinic friendliness as important to adolescents Self-stigmatization and feelings of worthlessness were [45]. This included flexibility in the days and times of the among the individual factors reported by our study par- clinic opening that did not collide with school activities. ticipants as reasons for poor adherence to medication. A In that study, service providers with good language skills similar study conducted with adults in Northern Tanza- and infrastructure that protected adolescents’ privacy nia reported that stigma and involuntary disclosure (i.e., and confidentiality in terms of their HIV status were also learning about one’s HIV status accidentally) were asso- important. In the current study, the time that adolescents ciated with poor adherence to ART [38]. Another factor spent waiting for their service and providers’ attitudes mentioned by adolescents was tight school schedules, were also among the main motivators for adolescents to which led to forgetting their medicine or even ignoring come to the hospital clinic. ART when they were hungry and busy. ART side effects, Adolescents’ HIV clubs have been found to improve such as nausea, dizziness, and drowsiness, can affect ado - adherence to medication, especially for those ages 15–19 lescents in their day-to-day activities; however, adoles- [46]. In adolescent clubs, they are taught about second- cents’ life depends on consistent adherence to ART. The ary HIV infection and prevention of infection by being adolescents in our study knew that they had no choice to responsible and not infecting their partner [41]. Some decline medication if they wanted to survive. adolescents in our study reported attending such clubs Disclosure of HIV status is an important step in ado- before their HIV status was disclosed to them—that is, lescents’ adherence to medication and their growth and some “got the hint” that they were HIV positive before development [39]. Unfortunately, disclosure of HIV sta- being told. Uninformed adolescents may wonder why tus to adolescents is delayed in many situations [40]. The no one is telling them. Knowledge of one’s HIV status current study found that some adolescents were left won- is challenging to adolescents, and they may become sad dering why they were taking medicine daily. For some and experience self-stigma, as our data show. But after study participants, nondisclosure resulted in poor adher- a period of time, they may learn to live with HIV and ence to medication and deterioration of their health sta- assume the responsibilities associated with their disease. tus. Other studies have had similar findings [19, 41]. Adolescents’ HIV clubs are one of the health care organi- Some of our adolescent participants informed their zational factors that helped them adhere to ART. HIV teachers about their HIV status. Such disclosure helped clubs provide services that include reproductive health adolescents keep clinic appointments without worries services, ART adherence counselling, and an entrepre- or fears of missing school. Friends also supported sick neurship course. This type of support system can help adolescents when they knew they had HIV, which also adolescents living with HIV combat their life challenges improved their adherence to their medication. In some with hope and enthusiasm. Other studies have shown instances, adolescents informed their siblings, who also teen clubs to be helpful in adolescent retention in HIV Joseph et al. BMC Medical Ethics (2022) 23:22 Page 8 of 9 care and ART [42]. More research on the benefits and as they live with a chronic condition that can bring many challenges of this type of adolescent support is needed challenges to their life and the relationships that they and its role in helping adolescents address their concerns. develop. Limitations Abbreviations The study had several limitations. First, the study inter - AIDS: Acquired immunodeficiency syndrome; ART : Antiretroviral therapy; CTC viewed only individuals who agreed to participate. This : Care and Treatment Centre; NatREC: National Research Ethics Committee; MUHAS: Muhimbili University of Health and Allied Sciences; UNICEF: United may have created a selection bias, and those who chose Nations Children’s Fund. not to participate may have had different concerns not readily addressed in this study. These adolescents may Acknowledgements Temeke Regional referral Hospital CTC staffs, Tatu the peer leader who com- have been uncomfortable discussing their views on municated and arranged our meeting with parents for consent to partici- parental authority versus adolescent autonomy in deci- pate in the study, research participants both parents and adolescents for sion making for HIV services, on HIV disclosure to oth- their time, patience and information and research assistants, Mr. Emmanuel Emmachius and Vedasto Osward for assisting in participants enrollment and ers and sexual partners, and on health care workers and data collection. the hospital environment in general. To address this limitation, however, the adolescents were told that the Authors’ contributions RSJ, Proposal development, seeking ethical clearance, data collection, data researcher would keep their information confidential. analysis, manuscript preparation and submission for publication. GM, Editing In addition, the interviews were conducted in a private Proposal, Data analysis, Manuscript reading and editing. GF, Main supervisor; room where adolescents were comfortable and away Proposal development, data analysis, Manuscript preparation. CMU Co super- visor; Proposal development, data analysis, Manuscript preparation. All authors from any outside influences. Generalization of findings read and approved the final manuscript. from this study is limited to the population of interest because it was conducted with adolescents at one hos- Funding This research was sponsored by Dartmouth MUHAS Research Ethics Training pital clinic in Tanzania. Future research should examine Program (DMRET ), Grants number: 5R25TW007693 offered as small grant for these issues at other types of clinics and with other ado- independent research and Ministry of Education, Science and Technology lescents, parents, and providers across different regions which sponsored this Ph.D. studies: FB.84/370/02A/83. of the country. Finally, the small sample size also lim- Availability of data and materials its generalizability. However, the qualitative nature of All data generated or analysed during this study are included in this published the study provides significant insights, and the greatest article. strength of a qualitative study is the depth and richness of exploration and description it offers [47]. Declarations Ethics approval and consent to participate Conclusion Participants protection regulations according to Declaration of Helsinki were Disclosure of HIV status to the adolescent is an ethical observed. Ethical clearance was obtained from Muhimbili University of Health and Allied Sciences (MUHAS) Institutional Review Board and National Research dilemma in HIV care of adolescents, but it also can have Ethics Committee (NatREC). Informed consent was obtained from parents a positive influence on the adolescent’s life in terms of or legal guardian for 10–17 years and assent from adolescents while 18 and adherence to ART. Knowledge and adherence can allow 19 years consented for their participation. Data was entered into NVIVO soft- ware and will be made available upon request. adolescents to live a life of purpose and to have hope for the future. Further research is needed on how to involve Consent for publication adolescents in their HIV care and to identify what is Not applicable. important to them as they learn to live with a chronic ill- Competing interests ness. Their voices are critical in developing strategies and The authors declare that they have no competing interests. guidelines to improve care delivery for this population. Author details More research is also needed on the role of parental sup- Department of Bioethics and Health Professionalism, School of Public Health port, compared with adolescents’ HIV clubs, in helping and Social Sciences, Muhimbili University of Health and Allied Sciences, Dar adolescents understand their disease, their disease trajec- es Salaam, Tanzania. Department of Developmental Studies, School of Public Health and Social Sciences, Muhimbili University of Health and Allied Sciences, tory, and their responsibilities as they age. Parents may Dar es Salaam, Tanzania. Biobehavioral Department, School of Nursing, perceive that the risk of harm by lack of autonomy may Department of Medical Ethics and Health Policy, and New Courtland Center be considered a “smaller harm” when placed in the con- for Transitions and Health, University of Pennsylvania, Philadelphia, PA, USA. text of receiving an early diagnosis and treatment; future Received: 20 July 2021 Accepted: 2 March 2022 research should address these ethical issues and how par- ents weigh the benefits and the risks of their adolescent’s HIV status. Adolescents are the future; we must continue to respect their views and understand their health needs Joseph  et al. BMC Medical Ethics (2022) 23:22 Page 9 of 9 References 29. Tong A, Sainsbury P, Craig J. Consolidated criteria for reporting qualitative 1. WHO. Handout for Module A Introduction; 2018. 6 p. research (COREQ): a 32-item checklist for interviews and focus groups. Int J 2. Armstrong A, Caswell G, Kihara, Cecilia Kate L. 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Qualitative inquiry into adolescents’ experience of ethical challenges during enrollment and adherence to antiretroviral therapy (ART) in Temeke Regional Referral Hospital, Tanzania

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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 independ- ence. 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 medica- tion. 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 *Correspondence: renatha1972@yahoo.com Department of Bioethics and Health Professionalism, School of Public Health and Social Sciences, Muhimbili University of Health and Allied Sciences, Dar es Salaam, Tanzania Full list of author information is available at the end of the article © The Author(s) 2022. Open Access This article is licensed under a Creative Commons Attribution 4.0 International License, which permits use, sharing, adaptation, distribution and reproduction in any medium or format, as long as you give appropriate credit to the original author(s) and the source, provide a link to the Creative Commons licence, and indicate if changes were made. The images or other third party material in this article are included in the article’s Creative Commons licence, unless indicated otherwise in a credit line to the material. If material is not included in the article’s Creative Commons licence and your intended use is not permitted by statutory regulation or exceeds the permitted use, you will need to obtain permission directly from the copyright holder. To view a copy of this licence, visit http:// creat iveco mmons. org/ licen ses/ by/4. 0/. The Creative Commons Public Domain Dedication waiver (http:// creat iveco mmons. org/ publi cdoma in/ zero/1. 0/) applies to the data made available in this article, unless otherwise stated in a credit line to the data. Joseph et al. BMC Medical Ethics (2022) 23:22 Page 2 of 9 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. Keywords: Adolescents, Ethical issues, HIV care and treatment, Adherence to antiretroviral therapy Background Due to the adolescent’s developing capacity to under- Adolescence is defined by the World Health Organization stand, adolescence is also a time when individuals enroll as a time of transition from childhood to adulthood for in HIV care and treatment programs in Tanzania learn those persons 10–19  years of age [1]; it is also a unique about the importance of adherence to care. The HIV developmental period when capacity for decision making Care and Treatment Centre (CTC) in the Out-Patient evolves [2]. Indeed, adolescents have an increasing need Department at the Temeke Regional Referral Hospital in to be involved in making decisions related to their care Tanzania is a health care facility that provides care and and well-being [3, 4]. Parents should foster adolescents’ treatment for individuals living with HIV and AIDs; it participation in decision making that supports their abil- was implemented in 2004 [16]. Ensuring adherence to ity to make informed judgments [5]. Adolescent involve- ART among adolescents can present unique challenges. ment in their own health care decision making can create A qualitative study conducted in Canada with 34 HIV- a positive relationship between the doctor, the patient, positive young people documented their confusion and and the parent, enhancing adolescents’ satisfaction with misunderstanding of HIV treatment; some felt they had their care and trust between all parties [6]. Even though no choice about treatment, some cited disruptions to adolescents should participate in decisions that affect their lives, and some reported difficulties in adhering their health and well-being, parents have the authority to to ART [17]. Many factors may influence adolescents’ make decisions for their sons and daughters [7]. adherence to ART, including their motivations to receive When an adolescent is ill, parents and the adolescent care, the serious nature of their illness, communication may disagree about what should be done or whose deci- styles in the clinical interaction, peer support, and struc- sion should be followed [8]. Adolescents’ growing desire tural issues [18] and whether they know their HIV status for independence may lead to conflict between them [19], among other issues. and their parents or designated care givers [9]. This is Risky behavior and curiosity expose adolescents to the the case, for example, when an adolescent has a diagno- potential for unprotected sex and increased risk of HIV sis of HIV and/or acquired immunodeficiency syndrome infection [20]. In Tanzania, adolescents’ enrollment in (AIDS) and ethical issues often arise in the African set- care and treatment for HIV and AIDS is low [21]. On ting [10]. top of the low enrollment, there is also a high rate of loss Adolescence is a time when decisions may need to be to follow-up and poor adherence to medication, which made about HIV testing and/or disclosure of previously further increase HIV infection incidence and mortal- known HIV status to the adolescent. Indeed, nearly 24% ity. Thus, there is a great need to understand the chal - of the Tanzanian population in 2020 were adolescents lenges, including the ethical concerns that adolescents aged 10–19  years [11]. In 2019, 11% of Tanzanian chil- face because of their HIV status. The purpose of this dren were born with HIV infection via perinatal trans- study was to understand adolescents’ experience of their mission [12]. Many Tanzanian parents who are aware of HIV-positive challenges that influenced their adherence their infant’s HIV infection choose not to tell the young to ART among adolescents attending an HIV care and child, and instead administer daily medications through- treatment facility in Temeke Regional Referral Hospital, out childhood. There are many challenges regarding Tanzania. continued nondisclosure of HIV status to adolescents living with HIV. HIV disclosure to adolescents is often Methods surrounded by parents’ fear of emotionally distressing An exploratory, qualitative, descriptive design was used a child [13]. Some adolescents infected perinatally may to examine adolescents’ experience of HIV-positive not know their HIV status; when there is no proper dis- challenges that influenced their enrollment in CTC and closure and sex education, these adolescents may infect adherence to ART at Temeke Regional Referral Hospi- others [14]. In fact, a qualitative study at Mbagala tertiary tal, in Dar es Salaam, Tanzania. This design was appro - health facility in Tanzania found low rates of HIV status priate, first to gain knowledge concerning the challenges disclosure to children and adolescents under age 15 [15]. and ethical concerns that influence adolescents to enroll Low rates of HIV disclosure may lead to poor antiretrovi- in and adhere to treatment within the African context, ral therapy (ART) adherence and other ethical concerns. and second to describe the events and experiences of Joseph  et al. BMC Medical Ethics (2022) 23:22 Page 3 of 9 adolescents at Temeke CTC [22]. Adolescents partici- the interviews, which were conducted by research assis- pated in semi-structured interviews, as described below. tants and the PI, parents or those designated as primary care givers who were not biological parents waited out- Ethical considerations side the interview room. Saturation was achieved with 22 Ethical clearance was obtained from Muhimbili Univer- adolescents, when data analysis and review indicated that sity of Health and Allied Sciences (MUHAS) Institutional no new themes or ideas were expressed by participants. Review Board and the National Research Ethics Review The interview guide and interviews were in Swahili— Committee. Written informed consent and pediatric the national language comfortable to all participants. assent were obtained from parents with adolescents ages The average duration of each interview was 25  min. The 10–17 years [1]. Older adolescents (18- and 19-year-olds) interview guide provided open-ended questions to solicit consented on their own. participants’ descriptions of their experiences of chal- lenges and ethical concerns during CTC attendance. Data collection Participants described how such challenges influenced This qualitative study was part of a larger quantitative their enrollment in CTC and adherence to ART. Probing study to assess knowledge of ethical issues among ado- questions were asked in areas that needed more clarifica - lescents living with HIV and their parents and health care tion or elaboration. Interviews were audiotaped with par- providers. Data were collected through in-depth semi- ticipants’ consent and transcribed verbatim; transcripts structured interviews conducted in a private location were translated to English. The study was conducted in the clinic. The interview guide was developed from a from January to August 2020. Although data collection literature review of ethical issues that influence adher - was expected to be completed at the end of March 2020, ence to ART among adolescents and in consultation there was a slight delay due to the COVID-19 pandemic, with qualitative experts on the study team [23–26]. Prior but the study was able to resume in July and completed as to full data collection, a small pilot study involving four indicated. adolescents was conducted at Amana Regional Referral Hospital in Tanzania. This site was selected because it is Data analysis and qualitative rigor similar to the CTC at Temeke Regional Referral Hospi- Descriptive statistics were used to analyze participants’ tal. Minor adjustments were made to several interview demographic characteristics, including age, gender, questions for clarity. Research assistants were trained on duration of ART, age at enrollment in the CTC, and age interviews, data collection tools, and transcription before when the individual learned of his/her HIV status. After going to Temeke CTC. Research assistants were two post transcription, each transcript was uploaded to NVivo graduate students at MUHAS, and they assisted the prin- 12 software, which assisted in data coding. Immedi- cipal investigator (PI) in conducting interviews and tran- ately following the interview, open coding was con- scribing audio-taped interviews. ducted on printed hard copies of the transcript, before Parents of adolescents with an appointment at the the transcript was uploaded to the software. We used clinic were phoned by a “leader” of the adolescents to the principles of thematic analysis to explore adoles- confirm their appointments. These leaders are adoles - cents’ experience of their challenges during HIV testing, cents selected to lead others in clinic activities, and their attending the CTC, and using ART [27]. Thematic analy - role is to assist in setting appointments for their peer sis helps researchers identify and examine themes or pat- group and to schedule follow-up appointments for those terns within a particular context. who did not show up for their initial appointment. The Six steps for thematic analysis were followed [22]. PI worked with these leaders to phone adolescents who First, all transcripts were reviewed by the PI and co- were on the list for the day to come with their parents to investigator to assess validity of the data and become ask for their permission to participate in the study. On familiar with the data. Second, phrases, sentences, and arrival, the PI introduced parents to the study and asked paragraphs were organized in a meaningful way to form them if they would be interested in participating. A total codes. We used open coding; codes were developed and of 28 were approached, and six declined; five parents modified as the coding process progressed. Third, we declined on behalf of their adolescent, and one adoles- examined related codes, and codes were then refined cent personally declined. Purposeful sampling was used into categories. Some of them were collated into initial to select participants based on their age [10–19], educa- themes. At the end of this step, the codes were organized tional level (primary school, secondary school, vocational into broader themes that seemed to specifically describe education and training authority students, and university issues in adolescents’ HIV care and treatment. Fourth, students), ability to express themselves, knowledge of themes were reviewed to identify whether they were sup- their positive HIV status, and enrollment in ART. During ported by the data. Themes that were related or seemed Joseph et al. BMC Medical Ethics (2022) 23:22 Page 4 of 9 to address the same issue or concern were combined to other persons and benefits and harms of such disclo - form a single theme, and those that were not supported sures; and factors supporting and interfering with adher- by data were eliminated. Lastly, relationships among the ence to ART, such as parental support, organizational themes were interpreted and described in connection to (clinic) support and problems, and self-stigmatization participants’ responses. and shame. Several criteria were used to evaluate the trustwor- thiness of the qualitative data. First, credibility was Lack of participation in decision making enhanced, because the first author had spent time in the regarding enrollment in care and treatment of HIV field and was familiar with the setting. Second, the vari - As noted, 16 participants were tested when they were ous perspectives of the research team members, who younger than age 5 and did not have the capacity to had different degrees of familiarity with the setting, were decide to enroll in care and treatment for their HIV. included. Third, transferability was assessed, which is a Decisions about testing and enrollment were made by determination of how applicable the findings are to other their parents, mostly mothers. Regardless of who made contexts and is also a way of evaluating trustworthiness the decision about enrollment in the CTC, adolescents of the data [28]. Here, the transcripts were translated reported adhering to their medication for their own to English, and discussion of emerging themes among health benefit, as signified by the quotes below: research team members enriched the interpretation of I was born with this disease; therefore, I was enrolled the data through the balance of perspectives represent- when still very young—my mother made the deci- ing different backgrounds and qualitative expertise. sion. I take medicine by adhering to treatment These measures enhanced the credibility of the repre - because I am living with HIV, therefore, I take ART sentation of participants’ views presented here. Our in order to improve my body immunity. (Adolescent study also follows the consolidated criteria for reporting # 09). qualitative research (COREQ) recognizing and address- I was enrolled when very young—my mother decided ing the importance of the research team, study design, for me to be tested and enrolled in CTC... I do take sample size, and analysis and findings [29]. Our detailed medicine in my mother’s room. (Adolescent #01). description of the study context, selection criteria, data collection, and analytical process is complemented below Six adolescents were tested and enrolled in the CTC at an by quotations from participant interviews, which allow older age (12–16 years). This decision was made by their readers to judge the dependability of the analysis and primary care giver. These adolescents reported that they transferability of the findings. were not involved in the decision-making process and were unhappy about their lack of participation in testing Results for HIV and then enrollment in the CTC. Even though Participant demographics they were unhappy, they still took their medicine, as In the sample of 22 adolescents interviewed, ages ranged noted below. from 13 to 19, with a mean of 16.6  years. Adolescents I was tested at age 12, and I was very sick—hence not were generally evenly represented by gender, with 12 involved in the decision to test. After the HIV testing, females and ten males. From an educational perspec- disclosure was done to my grandfather, who later tive, three were in primary school, ten were in second- on informed me. I felt sad in my heart for not being ary school, five were vocational education and training asked. (Adolescent #04). authority students, one was in adult education classes, I was tested when I was 15 years, I was not involved and one was a university student. The remaining two in the decision to be HIV tested despite being in the participants had completed primary school, and both room. I felt bad because they discussed about my were employed. All participants knew their HIV status; HIV status as if I am not existing in the room…. 16 were tested at a young age (less than 5 years), and six but I did not regard it as a mistake; for me it was a were tested at age 12  years or older. Age at disclosure kind of love from my mother because through that of HIV status to adolescents ranged from 10 to 18  years I knew my health status that am living with HIV, (mean = 11.5). this helped me to start medication early. I think if I did not start medication early, I would have already Qualitative themes passed away. (Adolescent # 03). Several themes emerged from the data: adolescents’ lack of participation in decisions about HIV care and treat- This participant also added, “Adolescents have to be given ment; issues around disclosure of HIV status, such as a chance to participate in the decision making for medi- delays in disclosure to the adolescent and disclosure to cal care. I do not blame my mother for what she did, but Joseph  et al. BMC Medical Ethics (2022) 23:22 Page 5 of 9 adolescents have to participate in the matters that affect administration wrote a letter and was submitted to their life.” (Adolescent # 03). school by my brother (Adolescent # 21). My class teacher was aware about this situation, since he is the one who was responsible to give me Disclosure of HIV status to the adolescent permission to attend clinic... My parents informed Delays in  disclosure leading to  poor adherence him about my situation. (Adolescent # 04). to ART Most adolescents reported a delay in disclo- sure of their HIV status to themselves (disclosure at ages Sometimes adolescents felt that they were compelled to 10–18 years). Disclosure should take place by the time an disclose their HIV status due to school regulations and individual is 7 years old, according to national HIV guide- requirements, as shown in the quote below: lines [30]. Only my form 2 teachers know my health status. It My father gave me information about my health was a day whereby students who had problems, like status when I was eleven years old; he told me that the deaf, disabled, were explaining their problems, by now you are matured person, and you are living so the teacher said whoever knows that she/he is sick with HIV virus from your mother. I was heartbroken has to report, and being with HIV infection, I have to because I did not know what was going on, they were report. (Adolescent # 01). hiding this information. (Adolescent # 09). Some of the adolescents felt that they were HIV infected Harm of  disclosure of  HIV status of  adolescents to  oth- even before they were informed, as shown by the follow- ers Some adolescents reported being stigmatized and ing quotes: called names after HIV disclosure to others. I was told by my mother when I was twelve years My mother died when I was young, and I am liv- after asking her why am I using medicine for a long ing with my father and stepmother. My stepmother time. Through attending clubs, I suspected I may be insults me due to HIV infection and the need to go living with HIV. In clubs we were taught issues that for medicine always. She discloses my HIV status to made me know my health status. (Adolescent # 22). everyone who comes to our family, without caring for the impact of discrimination to me. I sometimes feel Nondisclosure for some adolescents resulted in poor it is better if I was not born. (Adolescent # 09). adherence to medication and deterioration of health sta- tus, as signified by the following quote: One adolescent did not feel comfortable going to univer- sity for fear of other university students knowing her HIV I refused to take medicine until I knew why I was status, as shown by the below quote. taking these medicines; at first I was told to take medicine because they accelerate growth since I was … I was selected to join a government University in so thin. My health deteriorated after stopping ART. Dodoma, which is good and cheaper, but I decided (Adolescent # 11). to nd a fi private college in Dar es Salaam for fear of colleagues finding out about my HIV status when I have to move to hostel if I have to take medicine in Disclosure of adolescents’ HIV status to others their presence. (Adolescent # 20). Benefit of  disclosure of  HIV status of  adolescents to  oth - ers Participants revealed that disclosing HIV infection to others, including friends, was helpful, as illustrated by Adolescent’s experiences that influenced the decision the below quote: to adhere to ART Parental support for  their adolescents to  adhere One of my friends at school knows my health sta- to ART Participants raised concerns about their inability tus; she helps me when I get sick. I was in a critical to attend the CTC despite understanding the importance health condition when I decided to tell her (Adoles- of ART due to cost implications, as shown in these quotes: cent # 21). It is a personal decision to come to clinic to get medi- Adolescents living with HIV disclosed their HIV status to cine, counselling on reproductive issues, and other teachers and matrons for support to take their medicine services, but I do not want to come to CTC because appropriately and without missing clinic appointments. of the cost of fare and food. (Adolescent #21). Several quotes are provided below. It costs me because sometimes I wake up without I told my teachers because I wanted them to know bus fare, sometime when I attend CTC my friends why I was not attending school sometimes; hospital are eating food, but I cannot afford to eat because Joseph et al. BMC Medical Ethics (2022) 23:22 Page 6 of 9 I do not have money to buy food. (Adolescent # Individual adolescent factors Some adolescents reported 22). self-stigmatization and blaming themselves for being HIV infected. This affected their decision to adhere to care and Adolescents needed their parents’ logistical and finan - treatment, as shown by the quotes below: cial support, such as bus fare, food, and drinks, to come to the CTC for ART and other services provided, I do hide; I hide myself a lot when taking ART including counselling, as seen in the below quotes: because I do not want anyone to know that I am HIV infected. (Adolescent # 01). My parents are supportive of my care, since I was young and suffered HIV. Many parents might have On further inquiry he reported, “I do not want people to already given up and foregone treatment, but my stigmatize my mother; she is a petty trader, and if they parents are taking care of me. (Adolescent # 05). cannot buy from her, we can suffer.” (Adolescent # 01). My father is very supportive of my care, my mother I do not want to attend clinic due to a feeling of died when I was young (Adolescent # 09). shame when going to HIV care and treatment clinic Other relatives also provided support, although some- to take medicine. (Adolescent #15). times they may fail to provide for needed care, as shown below: It is the bus fare—if it happens that those whom I Discussion am living with have no money, then I have to find This is one of the first studies to focus on adolescents’ other relatives who can help. (Adolescent # 04). experience of participating in a care and treatment clinic for HIV in Tanzania. Several ethical concerns were noted. First, adolescents sought participation and some Health care organizational factors Participants control in decision making about their health and well- reported that health care organizational factors are being, but many found this difficult to do because such important to their adherence to ART, including time decisions were made before they became aware of their spent waiting for care, availability of medicine, health HIV status. Lack of participation made adolescents feel education provided at the clinic, adolescents’ HIV clubs disappointed, but they also understood the importance (organized groups of HIV-infected adolescents with the of being treated. Second, some adolescents felt shame, aim of encouraging one another), and attitudes of health stigma, and worthlessness associated with their HIV sta- care workers. tus. Third, delays in disclosure of HIV status to adoles - I do not want to come to clinic, it is costly, I need cents resulted in some adolescents neglecting ART and a time, there are traffic jams on the way to hospital, worsening of their health status. Disclosure to others was and I miss classes at school. (Adolescent # 20). regarded as both beneficial and harmful. We delay at the hospital, there is a shortage of Individual participation in medical decisions is an medicine; living far away causes me to arrive important ethical requirement for everyone, including at the hospital beyond the time for services and adolescents in low-to middle-income countries [31]. The means that I do not get medicines. (Adolescent # results of this study, however, show a lack of adolescents’ 11). involvement in decision making about HIV testing as Health care workers are coming to work late, hence well as enrollment in ART. Guidelines to involve ado- starting clinic late—therefore, delaying us unnec- lescents in their testing decision vary from one practice essarily. (Adolescent # 22). setting to another [32]. In South Africa, adolescents from The challenge that I face is time; sometimes I take age 12 onward can consent to HIV testing [33], while in medicine late because the person who is distribut- Tanzania the age of consent for HIV testing is 16 [34]. ing cards reports late to clinic. (Adolescent # 15). Most adolescents in our study were tested at a young Initially clinic was on Saturday, but this year age and were not able to deliberate about testing for HIV I have to come on Friday; it is difficult to attend and its implications. Parents make decisions in their chil- clinic on Friday because I have classes at school. dren’s best interest, and findings from this study reveal (Adolescent # 01). that adolescents appreciated their parents’ love for them. Sometimes some doctors make annoying language However, our participants also wanted to make decisions towards patients; we stay for a long time waiting for themselves. Despite being HIV tested and enrolled for services while doctors are chatting or eating in care in the CTC without their consent, adolescents without bearing in mind that patients have other adhered to ART because they believed it improved their societal obligations. (Adolescent #07). health. Hosek et  al. [35] conducted a qualitative inquiry Joseph  et al. BMC Medical Ethics (2022) 23:22 Page 7 of 9 and found similar results with U.S. adolescents, who conferred emotional support whenever they needed it adhered to their medication because they wanted to [42]. stay healthy and alive. Six adolescents in our study were Disclosure is an ethical dilemma, because despite its tested between the ages of 12 and 16; however, they were benefits it may also lead to stigma and discrimination, not involved in the decision to test and enroll in care. which are physically and emotionally harmful for HIV- These adolescents felt that they had been ignored, but infected adolescents. Some participants were ostracized they adhered to medication for their own health benefit. by their relatives because of their HIV status. Some par- Despite their perception of a lack of involvement in ticipants also reported being bullied and segregated from decisions, all adolescents who participated in this study others. Disclosure to their sexual partners led to bro- adhered to HIV care and treatment and attended the ken relationships and fears of not being able to become CTC. Parental support was a key factor in reminding engaged again. HIV-infected individuals have a duty to adolescents to attend the clinic; emotional and economic warn sexual partners and to give their partner the chance support were also among the issues mentioned by ado- to make an informed choice. But this may result in stigma lescents as a factor in adherence to ART. This finding is and discrimination against the HIV-infected individual similar to findings of a study conducted in Brazil [36]. In [43]. that study, adolescents living in a stable family structure The health care facility environment and adolescent had better adherence to medication and were less likely friendliness are among the factors that facilitated ado- to face challenges, such as stigma and discrimination. lescents’ decision to attend the HIV CTC. This finding This finding is also supported by other studies [37]. is also supported by other studies [44]. Disrespectful Participants also reported feelings of personal shame providers discouraged CTC attendance. This finding is that they are living with HIV, which resulted in neglect- similar to a finding in a 2014 study in which participants ing appointments and in not taking their ART on time. reported clinic friendliness as important to adolescents Self-stigmatization and feelings of worthlessness were [45]. This included flexibility in the days and times of the among the individual factors reported by our study par- clinic opening that did not collide with school activities. ticipants as reasons for poor adherence to medication. A In that study, service providers with good language skills similar study conducted with adults in Northern Tanza- and infrastructure that protected adolescents’ privacy nia reported that stigma and involuntary disclosure (i.e., and confidentiality in terms of their HIV status were also learning about one’s HIV status accidentally) were asso- important. In the current study, the time that adolescents ciated with poor adherence to ART [38]. Another factor spent waiting for their service and providers’ attitudes mentioned by adolescents was tight school schedules, were also among the main motivators for adolescents to which led to forgetting their medicine or even ignoring come to the hospital clinic. ART when they were hungry and busy. ART side effects, Adolescents’ HIV clubs have been found to improve such as nausea, dizziness, and drowsiness, can affect ado - adherence to medication, especially for those ages 15–19 lescents in their day-to-day activities; however, adoles- [46]. In adolescent clubs, they are taught about second- cents’ life depends on consistent adherence to ART. The ary HIV infection and prevention of infection by being adolescents in our study knew that they had no choice to responsible and not infecting their partner [41]. Some decline medication if they wanted to survive. adolescents in our study reported attending such clubs Disclosure of HIV status is an important step in ado- before their HIV status was disclosed to them—that is, lescents’ adherence to medication and their growth and some “got the hint” that they were HIV positive before development [39]. Unfortunately, disclosure of HIV sta- being told. Uninformed adolescents may wonder why tus to adolescents is delayed in many situations [40]. The no one is telling them. Knowledge of one’s HIV status current study found that some adolescents were left won- is challenging to adolescents, and they may become sad dering why they were taking medicine daily. For some and experience self-stigma, as our data show. But after study participants, nondisclosure resulted in poor adher- a period of time, they may learn to live with HIV and ence to medication and deterioration of their health sta- assume the responsibilities associated with their disease. tus. Other studies have had similar findings [19, 41]. Adolescents’ HIV clubs are one of the health care organi- Some of our adolescent participants informed their zational factors that helped them adhere to ART. HIV teachers about their HIV status. Such disclosure helped clubs provide services that include reproductive health adolescents keep clinic appointments without worries services, ART adherence counselling, and an entrepre- or fears of missing school. Friends also supported sick neurship course. This type of support system can help adolescents when they knew they had HIV, which also adolescents living with HIV combat their life challenges improved their adherence to their medication. In some with hope and enthusiasm. Other studies have shown instances, adolescents informed their siblings, who also teen clubs to be helpful in adolescent retention in HIV Joseph et al. BMC Medical Ethics (2022) 23:22 Page 8 of 9 care and ART [42]. More research on the benefits and as they live with a chronic condition that can bring many challenges of this type of adolescent support is needed challenges to their life and the relationships that they and its role in helping adolescents address their concerns. develop. Limitations Abbreviations The study had several limitations. First, the study inter - AIDS: Acquired immunodeficiency syndrome; ART : Antiretroviral therapy; CTC viewed only individuals who agreed to participate. This : Care and Treatment Centre; NatREC: National Research Ethics Committee; MUHAS: Muhimbili University of Health and Allied Sciences; UNICEF: United may have created a selection bias, and those who chose Nations Children’s Fund. not to participate may have had different concerns not readily addressed in this study. These adolescents may Acknowledgements Temeke Regional referral Hospital CTC staffs, Tatu the peer leader who com- have been uncomfortable discussing their views on municated and arranged our meeting with parents for consent to partici- parental authority versus adolescent autonomy in deci- pate in the study, research participants both parents and adolescents for sion making for HIV services, on HIV disclosure to oth- their time, patience and information and research assistants, Mr. Emmanuel Emmachius and Vedasto Osward for assisting in participants enrollment and ers and sexual partners, and on health care workers and data collection. the hospital environment in general. To address this limitation, however, the adolescents were told that the Authors’ contributions RSJ, Proposal development, seeking ethical clearance, data collection, data researcher would keep their information confidential. analysis, manuscript preparation and submission for publication. GM, Editing In addition, the interviews were conducted in a private Proposal, Data analysis, Manuscript reading and editing. GF, Main supervisor; room where adolescents were comfortable and away Proposal development, data analysis, Manuscript preparation. CMU Co super- visor; Proposal development, data analysis, Manuscript preparation. All authors from any outside influences. Generalization of findings read and approved the final manuscript. from this study is limited to the population of interest because it was conducted with adolescents at one hos- Funding This research was sponsored by Dartmouth MUHAS Research Ethics Training pital clinic in Tanzania. Future research should examine Program (DMRET ), Grants number: 5R25TW007693 offered as small grant for these issues at other types of clinics and with other ado- independent research and Ministry of Education, Science and Technology lescents, parents, and providers across different regions which sponsored this Ph.D. studies: FB.84/370/02A/83. of the country. Finally, the small sample size also lim- Availability of data and materials its generalizability. However, the qualitative nature of All data generated or analysed during this study are included in this published the study provides significant insights, and the greatest article. strength of a qualitative study is the depth and richness of exploration and description it offers [47]. Declarations Ethics approval and consent to participate Conclusion Participants protection regulations according to Declaration of Helsinki were Disclosure of HIV status to the adolescent is an ethical observed. Ethical clearance was obtained from Muhimbili University of Health and Allied Sciences (MUHAS) Institutional Review Board and National Research dilemma in HIV care of adolescents, but it also can have Ethics Committee (NatREC). Informed consent was obtained from parents a positive influence on the adolescent’s life in terms of or legal guardian for 10–17 years and assent from adolescents while 18 and adherence to ART. Knowledge and adherence can allow 19 years consented for their participation. Data was entered into NVIVO soft- ware and will be made available upon request. adolescents to live a life of purpose and to have hope for the future. Further research is needed on how to involve Consent for publication adolescents in their HIV care and to identify what is Not applicable. important to them as they learn to live with a chronic ill- Competing interests ness. Their voices are critical in developing strategies and The authors declare that they have no competing interests. guidelines to improve care delivery for this population. Author details More research is also needed on the role of parental sup- Department of Bioethics and Health Professionalism, School of Public Health port, compared with adolescents’ HIV clubs, in helping and Social Sciences, Muhimbili University of Health and Allied Sciences, Dar adolescents understand their disease, their disease trajec- es Salaam, Tanzania. Department of Developmental Studies, School of Public Health and Social Sciences, Muhimbili University of Health and Allied Sciences, tory, and their responsibilities as they age. Parents may Dar es Salaam, Tanzania. Biobehavioral Department, School of Nursing, perceive that the risk of harm by lack of autonomy may Department of Medical Ethics and Health Policy, and New Courtland Center be considered a “smaller harm” when placed in the con- for Transitions and Health, University of Pennsylvania, Philadelphia, PA, USA. text of receiving an early diagnosis and treatment; future Received: 20 July 2021 Accepted: 2 March 2022 research should address these ethical issues and how par- ents weigh the benefits and the risks of their adolescent’s HIV status. Adolescents are the future; we must continue to respect their views and understand their health needs Joseph  et al. BMC Medical Ethics (2022) 23:22 Page 9 of 9 References 29. Tong A, Sainsbury P, Craig J. Consolidated criteria for reporting qualitative 1. WHO. Handout for Module A Introduction; 2018. 6 p. research (COREQ): a 32-item checklist for interviews and focus groups. Int J 2. Armstrong A, Caswell G, Kihara, Cecilia Kate L. 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Journal

BMC Medical Ethics – Springer Journals

Published: Mar 9, 2022

Keywords: Adolescents; Ethical issues; HIV care and treatment; Adherence to antiretroviral therapy

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