Experiences of Adolescents Living With HIV During the COVID-19 Pandemic in Dar es Salaam,Tanzania: A Qualitative Study

Abstract

Background

Limited research evidence exists on the experiences of adolescents living with HIV about their access to antiretroviral therapy during the COVID-19 pandemic in Tanzania.

Objective

To explore the lived experiences of adolescents living with HIV during the COVID-19 pandemic, including COVID-19-related anxiety, facilitators and barriers to accessing HIV care and treatment, and the coping strategies employed to remain healthy and resilient and if differences existed based on levels of anxiety.

Methods

We adopted a case study design to understand both normative and individual lived experiences of purposefully sampled adolescents receiving HIV care during the COVID-19 pandemic with higher and lower anxiety levels. A total of 32 participants took part in the study, including 24 in focus group discussions and 8 in in-depth interviews. Data were analyzed using thematic analysis.

Results

Adolescents living with HIV faced heightened anxiety and notable barriers to accessing HIV services during the COVID-19 pandemic. Their anxiety was driven by fear of infection, uncertainty about prevention measures, concerns about receiving care outside HIV clinics, and a perceived increased vulnerability. Many reported difficulty attending clinic appointments, largely due to government- and parent-imposed restrictions such as stay-at-home directives, mandatory mask use, and limited public transport capacity, but no difference based on anxiety level.

To cope, adolescents relied on treatment adherence knowledge, self-efficacy, and family support. Both low- and high-anxiety groups encountered similar barriers to care and treatment adherence; however, those with higher anxiety reported greater fear of infection, less confidence in coping, and less helpful coping skills. No differences were observed by sex or age.

Conclusion

The findings highlight that self-efficacy, risk-reduction knowledge, problem-solving skills, and family support helped reduce anxiety and support treatment adherence among adolescents living with HIV, underscoring the need for targeted support programs during public health crises.

Plain Language Summary Title

Experiences of adolescents living with HIV during the global outbreak of COVID-19 in Dar Es Salaam, Tanzania

Plain Language Summary

This study explored how teenagers living with HIV in Dar es Salaam, Tanzania, experienced the COVID-19 pandemic. It looked at what they knew about COVID-19, the challenges they faced in accessing HIV care and taking their medication, and how they coped during this time.

Overall, the adolescents had a good understanding of COVID-19 and how to protect themselves from infection. However, many experienced anxiety related to the pandemic. This anxiety was common across participants, as many felt especially vulnerable because of their HIV status, particularly due to early messages that people with weakened immune systems were at higher risk. Those with higher levels of COVID-19-related anxiety also reported more intense and persistent fears, and were more likely to doubt their ability to cope. They also tended to use less helpful coping strategies, such as withdrawing from others. The pandemic also created practical challenges. Some adolescents had difficulty accessing HIV care due to movement restrictions and were worried about running out of medication because of disruptions in supply.

Despite these challenges, many adolescents showed resilience. They relied on their understanding of the importance of adhering to HIV treatment, their confidence in staying healthy, and support from family members. To manage their fears, they used strategies such as problem-solving to reduce risk, seeking support from family and friends, and drawing on their faith. Some also chose to isolate themselves as a way of feeling safer.

In summary, the study shows that knowledge, confidence, problem-solving skills, and family support played an important role in helping adolescents living with HIV manage their health and cope with anxiety during the COVID-19 pandemic.

Keywords

adolescents with HIV COVID-19 pandemic COVID-19 anxiety treatment adherence qualitative research Tanzania

Introduction

The COVID-19 pandemic substantially disrupted work, healthcare delivery, social interactions, and daily life worldwide.^1–3 These disruptions resulted from COVID-19 infections and from public health measures implemented to reduce transmission and save lives, including social distancing, travel restrictions, limits on gatherings, and mask mandates.^4–6

Across Sub-Saharan Africa, the pandemic posed significant challenges to healthcare access, economic stability, and continuity of essential services, including HIV care. Studies from Kenya and Zambia documented disruptions in HIV testing and antiretroviral therapy (ART) services.^7–9 In Kenya, more than one-third of adolescents with HIV (AWHIV), defined as individuals aged 15 to 19 years diagnosed with HIV and enrolled in ART care, reported difficulties refilling ART, food insecurity, and loss of caregiver income.⁷ AWHIV are particularly vulnerable due to their dependence on family support for accessing care and maintaining adherence.⁸ In Zambia, adults living with HIV reported both benefits, such as multimonth ART dispensing, and challenges, including concerns about overcrowding at clinics and economic hardship related to job losses.⁹

In Tanzania, the first COVID-19 case was reported in March 2020, followed by the implementation of transmission control measures, including partial closures of educational institutions, restrictions on social gatherings, and mandatory physical distancing in public spaces and healthcare facilities.¹⁰ Public health communications provided regular updates on COVID-19 cases and deaths and targeted risk communication for vulnerable groups, including people living with chronic conditions such as HIV.^11,12 As in many settings, Tanzania experienced socioeconomic consequences, including slowed economic growth and disruptions to health service access.^12–15 Among adolescents, the pandemic was associated with increased loneliness, stress, and fear linked to uncertainty around education, economic conditions, and health risks.¹⁶

Despite this, the specific effects of COVID-19 and related mitigation measures on AWHIV in Tanzania remain poorly understood. While evidence from other countries suggests substantial disruptions to HIV care during the pandemic, comparable data from Tanzania are limited. Few studies have examined the lived experiences and coping strategies of AWHIV, including the behavioral, cognitive, and social responses used to manage stress and barriers to care during this period.

Our recent quantitative study among Tanzanian adolescents living with HIV (AWHIV) found that COVID-19-related anxiety—defined as fear, worry, or stress regarding the risk of infection—was generally low and not associated with poorer treatment outcomes, suggesting notable resilience.¹⁷ Building on these findings and to better understand the underlying experiences and mechanisms shaping this resilience, we conducted the present qualitative study among AWHIV who participated in the prior survey. The main objective was to explore adolescents’ lived experiences during the COVID-19 pandemic, including COVID-19-related anxiety, facilitators and barriers to accessing HIV care and treatment, and coping strategies used to maintain ART adherence and psychological resilience.

The specific objectives were to

Describe experiences of COVID-19-related fear and anxiety among AWHIV during the pandemic;

Examine barriers and facilitators influencing access to HIV care and treatment; and

Identify coping strategies employed to maintain treatment adherence, health, and resilience during the COVID-19 pandemic.

This study contributes to a deeper understanding of how AWHIV in Tanzania experienced the COVID-19 pandemic and identifies potential interventions to strengthen resilience and well-being during future public health crises.

Methods

Study Setting

The explanatory qualitative study was conducted in Dar es Salaam among AWHIV attending ten HIV care and treatment clinics (CTCs), from May to September 2023. The CTCs were large-volume facilities, each serving a minimum of 5000 people living with HIV enrolled in ART services. The focus group discussion (FGD) and interviews were conducted in premises located away from the CTCs—at Muhimbili University of Health and Allied Sciences. Conducting the FGDs and interviews away from the clinic setting allowed participants to speak more freely and honestly, without feeling compelled to give provider-pleasing responses. It also offered greater privacy and confidentiality, helping participants feel safe and more comfortable sharing personal experiences, particularly around sensitive issues such as HIV care.

Study Design

The study adopted a case study design^18,19 to understand normative and individual lived experiences of purposefully sampled adolescents in HIV care during the COVID-19 pandemic. While phenomenology focuses primarily on uncovering the essence of individual lived experiences, this study sought not only to understand the personal realities of adolescents living with HIV on ART but also the broader contextual and normative influences shaping those experiences. A case study design was therefore more appropriate, as it allowed for an in-depth, contextualized examination of adolescents’ experiences within their social, health system, family, and programmatic environments—through the use of multiple data sources (in-depth interviews, FGDs).

Study Population

Eligible participants were adolescents aged 15 to 19 years, living with HIV, who had participated in the quantitative survey on COVID-19-related anxiety.¹⁷ Details on how anxiety was assessed and categorized into higher and lower COVID-19 anxiety levels are provided in our first paper.¹⁷

Sampling Approach and Sample Size

Given the study's exploratory qualitative design, participants were purposively sampled from adolescents aged 15 to 19 years living with HIV who had taken part in the quantitative survey. Selection was guided by categorization into lower versus higher COVID-19 anxiety groups, with an equal number of male and female adolescents recruited within each category. This approach was intended to capture a broad range of perspectives across key participant characteristics rather than to achieve formal thematic saturation. Thus, a total of 32 participants took part in the study, including 24 in focus group discussions and 8 in in-depth interviews.

The study aimed to provide contextualized insights into adolescents’ lived experiences during the COVID-19 pandemic, complementing findings from a prior quantitative survey, rather than to exhaustively identify all possible themes. This approach is consistent with qualitative research that prioritizes depth, diversity, and contextual understanding when saturation is not feasible.^20,21 The use of four FGDs with 4 to 8 participants each allowed exploration of shared norms, social influences, and group-level dynamics within and across gender and anxiety categories. Complementing the FGDs, 8 in-depth interviews (IDIs) provided the opportunity to obtain richer, individual-level narratives, particularly for experiences that may not be openly discussed in group settings.

Available contact phone information for clients at the HIV clinics was used to contact parents/guardians of AWHIV and provide information about the study. Adolescents expressing interest in participating, aged 18 to 19, were requested to provide consent or assent along with parental consent if they were aged 15 to 17.

Data Collection Instruments

Data were collected using semistructured FGD and IDI guides developed by the study team. The guides were designed to elicit participants’ experiences during the COVID-19 pandemic. Both FGD and IDI guides included open-ended questions covering the following domains: (a) knowledge of COVID-19, including transmission and prevention; (b) barriers and facilitators to accessing HIV care and maintaining treatment adherence; (c) experiences of COVID-19-related anxiety; and (d) coping strategies used to remain engaged in HIV care and to mitigate the psychological impact of the pandemic.

Data Collection

Four FGDs with 6 to 8 participants each, and 8 IDIs were conducted. Data collection was performed by three project staff (two female social scientists and one male public health expert (Bachelor's, Master's, and PhD degrees), with experience in conducting qualitative interviews and facilitating FGDs. The interviewers had no previous relationship with the participants, and no one else was present during the interviews. Rapport was developed with participants in four ways: first, when explaining the purpose of the study, the voluntary nature of participation, study expectations from respondents, participation risks and benefits, and how confidentiality of information shared would be maintained. Interviewers also identified themselves as public health researchers affiliated with the Muhimbili University of Health and Allied Sciences. Second, interview and FGD venues ensured privacy; third, as part of the consenting process, the interviewers provided participants with copies of consent forms to go with home and discuss with parents/guardians; fourth, interviewers demonstrated interest and empathic concern for respondents' circumstances. Interviews were conducted in Kiswahili, digitally recorded, transcribed verbatim, and translated into English. Each interview lasted 45 min to an hour.

Reflexivity Statement

The research team reflected on their positionality throughout the study to enhance trustworthiness. Data were collected by three Tanzanian researchers—two female social scientists and one male public health expert—with undergraduate, master's, and doctoral training and prior experience in qualitative research. Their professional backgrounds in public health and social sciences shaped an interest in adolescents’ lived experiences and health-related vulnerabilities, which informed the development of the interview guides and probing strategies. At the same time, the team was cognizant that their training and institutional affiliation with Muhimbili University of Health and Allied Sciences could position them as authority figures, potentially influencing participants’ responses. To mitigate this, interviewers emphasized their role as learners, adopted a nonjudgmental and empathetic stance, and encouraged participants to freely share both positive and negative experiences. Interviews were conducted in Kiswahili to facilitate comfort and expression. The researchers had no prior relationships with participants, and privacy was ensured during data collection. Reflexive discussions were held within the research team during data collection and analysis to examine assumptions, compare interpretations, and ensure that findings were grounded in participants’ narratives rather than researchers’ preconceptions.

Data Management and Analyses

We used both deductive and inductive approaches when coding. We developed a preliminary codebook based on the main areas of inquiry in the IDI and FGD guides. Three coders (TN, DG, and SK) independently reviewed transcripts and applied codes using Dedoose software. To ensure consistency, the coders initially double-coded a subset of transcripts and compared coding outputs. Discrepancies were discussed in regular debrief meetings, where differences in code interpretation and application were examined and resolved through consensus. Where necessary, the codebook was refined to improve clarity and consistency before proceeding with coding of the remaining transcripts. Excerpts were analyzed by following the steps in thematic analysis by Braun and Clarke²² to generate meaningful themes and potential subthemes. Two team members (CH and LH) conducted extensive reviews of the excerpts, themes, and subthemes as a quality assurance step for deductive and emergent inductive analyses. Finally, the team (TN, DG, SK, CH, RM, MC, and LH) worked together to refine emergent themes and subthemes.²³

Trustworthiness of the Findings

To ensure trustworthiness in exploring the lived experiences of adolescents with HIV during the COVID-19 pandemic, several strategies were applied across the four key criteria: credibility, transferability, dependability, and confirmability. Credibility was ensured through prolonged engagement with the data, triangulation across FGDs and IDIs, and consistency across sex and COVID-19 anxiety levels.²⁴ Data collection allowed time for reflection and iterative refinement between data collection and preliminary analysis. Member checks were conducted by restating or summarizing participants’ responses to confirm accuracy, and peer debriefing by co-authors (SK, CH, and LH) ensured that final themes were grounded in the data. Transferability was achieved by providing thick, detailed descriptions of the study context and participants’ backgrounds, allowing readers to determine whether the findings might apply to similar settings. Purposeful sampling captured a range of experiences among adolescents living with HIV. Dependability was maintained by keeping an audit trail documenting all research steps, using consistent coding procedures, and engaging peers or supervisors to review the analytic process for coherence and accuracy. Finally, confirmability was ensured through reflexivity—acknowledging and documenting the researchers’ perspectives and potential biases—along with transparent reporting and the inclusion of direct participant quotes to ground findings in adolescents’ authentic voices.

Ethical Considerations

Ethical approval for this study was granted by the Muhimbili University of Health and Allied Sciences and the National Institute of Medical Research (NIMR/HQ/R.8a/Vol. IX/4054), by Northwestern University in the United States. All study participants provided written informed assent (15-17 years) or consent (18 years and older) before data collection. Parents of participants between 15 and 17 were contacted by phone and informed about the study and the voluntary nature of adolescents’ participation. Parents/guardians were verbally requested to allow assenting adolescents (15-17 years) to participate.

Results

Characteristics of the Participants

We used the Consolidated Criteria for Reporting Qualitative Studies (COREQ) for reporting²⁵ (Supplementary File). A total of four FGDs (n = 24, 58.3% female) and eight IDIs (n = 8, 50% female) were conducted. Of the four FGDs, 20 adolescents participated in three groups, each comprising 6 to 8 participants, while the fourth FGD included only four participants because two AWHIV did not attend. Moreover, of the 10 AWHIV who were contacted for participation in the IDIs, 2 could not attend due to competing school obligations (1) and feeling unwell on the planned IDI date (1). Descriptive information on FGD and IDI participants is summarized in Tables 1 and 2. Most (91.6%) FGD and all IDI participants were between 17 and 19 years old. Most participants were students, and more than half (54.2%; n = 13) lived with guardians other than their parents.

Table 1.

Sociodemographic Characteristics of Focus Group Discussion Participants.

No	Sex	Number of Participants	COVID-19 Anxiety Level	Education		Age (Years)		Living Situation
No	Sex	Number of Participants	COVID-19 Anxiety Level	Some or Completed 1^o School	Some or Completed 2^o School	15-16	17-19	Living With Parent	Living With Guardian
1	Female	8	Lower	0	8	1	7	5	3
2	Male	4	Lower	0	4	−	4	1	3
3	Female	6	Higher	3	3	1	5	2	4
4	Male	6	Higher	2	4	−	6	3	3
	Total	24		5	19	2	22	11	13

1^o, primary; 2^o, secondary.

Table 2.

Sociodemographic Characteristics of In-Depth Interviewees.

No	Sex	Age in Years	COVID-19 Anxiety Level	Highest Level Education	Living Situation
1	Male	17	Lower	Form 4 (student)	Parents
2	Male	19	Lower	Grade 6 (dropout)	Alone
3	Female	19	Lower	Form 4 (graduate)	Guardian
4	Female	17	Lower	Form 4 (graduate)	Parents
5	Male	18	Higher	Form 3 (student)	Parents
6	Male	17	Higher	Form 3 (student)	Guardian
7	Female	17	Higher	Form 3 (student)	Guardian
8	Female	18	Higher	University (student)	Guardian

Themes

Six thematic areas emerged from the data, summarized in Table 3, including (1) high knowledge with some misconceptions about COVID-19; (2) experiences of COVID-19-related fear or anxiety; (3) experiences of COVID-19 prevention measures as barriers to HIV care access; (4) experiences of barriers to ART adherence during COVID-19; (5) facilitators and coping strategies for maintaining ART adherence during COVID-19; and (6) facilitators and coping strategies for managing COVID-19-related anxiety.

Table 3.

Summary of Themes and Subthemes, From FGDs and IDIs With AWHIV, Dar es Salaam, 2023.

Themes	Subthemes
High knowledge with some misconceptions about COVID-19	Accurate knowledge of COVID-19 transmission and prevention: Misconceptions about COVID-19 prevention
Experiences of COVID-19-related fear or anxiety	Pervasive anxiety across participants Perceived vulnerability and fear of severe outcomes Anxiety related to exposure in public and clinical settings Fear of misdiagnosis and inappropriate care
Experiences of COVID-19 prevention measures as barriers to HIV care access	Postponement of clinic visits to reduce exposure risk Transport-related delays and competing demands Facemask requirements as a financial and access barrier
Experiences of barriers to ART adherence during COVID-19	ART stockouts and regimen disruptions Food insecurity and reduced meal frequency
Facilitators and coping strategies for maintaining ART adherence during COVID-19	Knowledge of ART adherence benefits Self-efficacy and adherence planning Multimonth dispensing (MMD)
Facilitators and coping strategies for managing COVID-19-related anxiety	Problem-solving and risk avoidance Social support Spirituality Social withdrawal

High Knowledge With Some Misconceptions about COVID-19

Accurate Knowledge of COVID-19 Transmission and Prevention

Most participants demonstrated correct knowledge of COVID-19 transmission and prevention, regardless of anxiety level. They commonly identified airborne transmission in crowded settings and contact with contaminated surfaces as key risks. Preventive practices were also well understood, including mask use, hand hygiene, and avoiding gatherings.

COVID-19 infects people through proximity in groups of people like in groupings for parties and through handshaking. (IDI, female, higher anxiety)

Comparative Patterns

There were no notable differences in knowledge by anxiety level, sex, or age, suggesting broadly consistent public health messaging reach across demographic groups.

Misconceptions About COVID-19 Prevention

Despite generally high levels of knowledge, some misconceptions persisted. A few participants incorrectly attributed transmission to contact with sweat, indicating gaps in understanding of transmission pathways.

It (COVID-19) spreads by touching the sweat (of an infected person). (IDI, male, higher anxiety)

In addition, some participants reported reliance on unproven preventive practices, particularly inhalation of steam from medicinal plants such as neem, guava, and orange leaves. These beliefs reflect the integration of local health practices into COVID-19 responses, but also highlight potential misinformation.

I would mix leaves … boil them in water, and inhale the steam to protect myself. (IDI, male, higher anxiety)

No differences were seen based on anxiety level, age, or sex.

Experiences of COVID-19-Related Fear and Anxiety

Pervasive Anxiety Across Participants

Experiences of COVID-19-related anxiety were widely reported among adolescents living with HIV (AWHIV), regardless of measured anxiety level. Key concerns included fear of exposure, uncertainty about the effectiveness of preventive measures, perceived heightened vulnerability due to HIV status, and worries about receiving inappropriate care. Adolescents with higher anxiety expressed more intense and persistent fears.

Perceived Vulnerability and Fear of Severe Outcomes

Participants commonly linked their HIV status to increased susceptibility to severe COVID-19 outcomes. Exposure to media reports emphasizing high mortality and risks among immunocompromised individuals amplified fears of death. This perceived vulnerability led to heightened emotional distress, including persistent worry and, in some cases, crying when alone.

…if it were to get me (COVID-19), would I not die? … sometimes you cry and wonder … what will I do if I get COVID-19 while I already have this disease (HIV)? (FGD 01, female, lower anxiety)

Anxiety Related to Exposure in Public and Clinical Settings

Concerns about contracting COVID-19 were intensified by the perceived inevitability of exposure in public and healthcare settings. Public transport was frequently described as high risk and difficult to navigate safely, while inconsistencies in adherence to preventive measures—particularly among healthcare providers—undermined trust and increased anxiety, as illustrated by the following quotes.

When it comes to public buses (laughs), that is where I had the most anxiety! It would reach a point where I would yell at someone if they touched me. Then I would move, take a cloth, and wipe myself (laughs). So, I was anxious. (FGD 03, female, higher anxiety). (FGD 03, female, higher anxiety)

Some clinic staff were not wearing masks … this discrepancy made me anxious. (IDI, female, higher anxiety)

Fear of Misdiagnosis and Inappropriate Care

A further source of anxiety was the risk of receiving incorrect or delayed treatment during peak pandemic periods. Participants worried that symptoms such as fever might be misattributed to COVID-19, particularly in non-HIV care settings, potentially delaying appropriate HIV-related care. This concern sometimes disrupted care-seeking beyond HIV clinics.

If I go to a general hospital with fever … will I get medicine on time … or will they say it is COVID-19? (IDI, female, lower anxiety)

Participants with higher anxiety levels expressed more intense and persistent fears, including doubts about the effectiveness of their coping strategies. No differences were observed by sex or age.

Experiences of COVID-19 Prevention Measures as Barriers to HIV Care Access

COVID-19 prevention measures created multiple barriers to HIV care access, affecting adolescents living with HIV (AWHIV) regardless of anxiety level, sex, or age. Restrictions such as stay-at-home parental guidance, mandatory mask use, and reduced public transport capacity disrupted routine clinic attendance and contributed to delays. These are expounded under the following subthemes.

Postponement of Clinic Visits to Reduce Exposure Risk

Some participants intentionally delayed clinic visits during peak transmission periods as a self-protection strategy. Decisions to postpone were often influenced by caregivers, particularly in response to media reports of rising COVID-19 cases. While protective, these actions disrupted continuity of care.

Sometimes we postpone clinic dates … my mother was protecting me. (IDI, male, lower anxiety)

Transport-Related Delays and Competing Demands

Reduced transport capacity due to physical distancing measures made timely arrival at clinics difficult. Long travel distances, overcrowded bus stops, and restrictions on standing increased delays, often leading to missed or rescheduled appointments. Rescheduling created additional challenges, particularly for students who had to balance school attendance with clinic visits.

During COVID-19 … all people on the bus have to be seated … by the time I reach the clinic, I am late. (FGD 04, male, higher anxiety)

If you are late … they tell you to come back on Monday … but on Monday you have school. (IDI, male, lower anxiety)

Facemask Requirements as a Financial and Access Barrier

Mandatory facemask policies at health facility entry points also limited access for some participants. The need to purchase masks at the facility gate created a financial barrier, preventing entry for those without sufficient funds.

If you didn’t have a face mask, you stayed outside … you were not allowed to go in. (IDI, male, higher anxiety)

Comparative Patterns

These barriers related to COVID-19 prevention measures were consistently reported across anxiety levels, with no observable differences by sex or age.

Experiences of Barriers to ART Adherence During COVID-19

ART Stockouts and Regimen Disruptions

During peak transmission periods, facility-level ART stockouts disrupted continuity of care. Some AWHIV were switched to temporary regimens, introducing uncertainty, repeated clinic visits, and unfamiliar side effects. In some cases, delays in accessing usual medication led to treatment interruptions of up to two weeks:

…my ARV medication was finished … they asked me to come back, but it had still not arrived … they gave me drugs I did not know … that month, I did not take medication for two weeks … I felt sick. (FGD, female, lower anxiety)

Food Insecurity and Reduced Meal Frequency

Pandemic-related income shocks reduced household food availability, with reports of fewer meals and limited dietary diversity. For some AWHIV, lack of food undermined adherence, particularly when taking ART on an empty stomach:

…the main challenge was food … sometimes there is no food at all … this is why sometimes I start reconsidering whether to take my medicine. (IDI, female, higher anxiety)

Comparative Patterns

These barriers to ART adherence were consistently reported across anxiety levels, with no observable differences by sex or age.

Facilitators and Coping Strategies for Maintaining ART Adherence During COVID-19

AWHIV reported multiple strategies to address barriers to HIV care access and ART adherence, as outlined in the sections below.

Knowledge of ART Adherence Benefits

AWHIV demonstrated a strong understanding of adherence, including risks of viral rebound, drug resistance, and treatment failure. This knowledge reinforced commitment to sustained ART use despite disruptions:

…the more I take my medication on time, the more I make my HIV dormant … if I don’t take it regularly, my health will deteriorate. (IDI, female, higher anxiety)

Self-Efficacy and Adherence Planning

Many AWHIV exhibited high self-efficacy, proactively using strategies such as tracking pill counts, memorizing appointment dates, and setting multiple reminders to maintain adherence:

…I look inside the bottle and see how many pills are left … so I know tomorrow is my clinic appointment date and prepare everything that night. (IDI, female, higher anxiety)

For pill-taking, I set three alarms … when they alert me, I check the wall clock and know it is time to take them. (FGD 02, male, lower anxiety)

Multimonth Dispensing (MMD)

Service delivery adaptations, particularly multimonth ART dispensing, reduced clinic visits and COVID-19 exposure. Extended refill intervals and streamlined collection facilitated continuity of treatment:

…I was refilling every month before … but now I go once in three months for tests, and monthly only for ARV medications. (FGD 02, male, lower anxiety)

Comparative Patterns

These facilitators and coping strategies for maintaining ART adherence during COVID-19j were consistent across anxiety levels, with no notable differences by sex or age.

Facilitators and Coping Strategies for Managing COVID-19-Related Anxiety

AWHIV employed multiple strategies to mitigate COVID-19-related anxiety, including risk-reduction behaviors, social support, spirituality, and social withdrawal.

Problem-Solving and Risk Avoidance

Participants reduced anxiety by actively minimizing exposure risk, particularly by avoiding crowded settings and limiting movement. This problem-focused coping helped them feel more in control of infection risk:

…(laughs) I was at home, so the disease could not get me … because I did not go outside and wander around … something cannot come and get you where you are … something gets you when you go looking for it. (IDI, female, lower anxiety)

…I avoided staying in groups of people … I was not walking in groups … I walked alone all the time; there was no touching. (IDI, male, lower anxiety)

Social Support

Family support played a central role in reducing anxiety by reinforcing preventive behaviors and enabling safer alternatives to high-risk situations, such as avoiding crowded transport:

My family supported me by paying for a boda-boda … my mother felt buses were too crowded and risky for infection, so we decided I should use a boda-boda instead. (FGD 04, male, higher anxiety)

Spirituality

Faith-based coping provided reassurance, hope, and emotional stability. Spiritual beliefs, often reinforced by parents, helped participants manage uncertainty and reduce fear:

My mother told me God oversees all of it … even this COVID-19 will pass, and I will not get it …she would give me hope that I would not get it, and even if I did, God would help me. (FGD 01, female, lower anxiety)

Social Withdrawal

Some participants coped through self-isolation and reduced social interaction, perceiving this as protective against infection:

It was not possible for me to get that disease because of the lifestyle I was living … I was not going out frequently … if I go out, I return inside immediately … I was not wandering around. (IDI, female, higher anxiety)

Comparative Patterns

While similar strategies for managing COVID-19-related anxiety were reported across groups, higher-anxiety AWHIV described more intense avoidance and, in some cases, persistent fear despite these efforts:

There is nothing that helped, the fear was constant. (IDI, female, higher anxiety)

Discussion

Our study examined multiple dimensions of AWHIV experiences during the COVID-19 pandemic in Dar es Salaam, including COVID-19 knowledge, barriers and facilitators to HIV care, ART adherence strategies, and COVID-19-related anxiety. Overall, AWHIV showed high COVID-19 knowledge and strong commitment to ART adherence despite notable barriers. However, anxiety, lingering misconceptions, and socioeconomic constraints continued to shape their experiences. Coping ranged from adaptive strategies—such as family support, problem-solving, and spirituality—to restrictive behaviors like social withdrawal. These findings contextualize the resilience observed in clinic attendance and ART adherence, as well as the low levels of COVID-19-related anxiety reported in our quantitative study.

The study found limited differences between adolescents with lower and higher anxiety levels in terms of their knowledge of COVID-19, their experiences with COVID-19 prevention measures as barriers to HIV care access, and the challenges they faced regarding ART adherence during the pandemic. However, key differences emerged in their psychological responses and coping patterns. Adolescents with higher anxiety expressed more intense and persistent fears, often accompanied by doubts about the effectiveness of their coping strategies. In contrast to their lower-anxiety counterparts, they were also more likely to adopt maladaptive coping mechanisms, such as social withdrawal. These findings suggest that while structural and informational experiences were largely shared across groups, the emotional and behavioral responses to these experiences varied significantly by anxiety level.

The limited differences observed between adolescents with higher and lower anxiety levels likely reflect the shared structural and contextual realities within which all participants were navigating the COVID-19 pandemic. First, exposure to similar sources of information (eg, public health messaging, community narratives) may have contributed to relatively uniform knowledge about COVID-19 across both groups. Second, the prevention measures implemented during the pandemic—such as movement restrictions, fear of infection, and service disruptions—created common barriers to HIV care access and ART adherence that affected adolescents irrespective of their anxiety levels. In this sense, these challenges were largely structural and external, thereby producing comparable lived experiences across groups. However, where differences did emerge was in the internal processing of these shared experiences. Adolescents with higher anxiety appeared to appraise the same circumstances as more threatening, resulting in more intense and persistent fears, as well as doubts about the adequacy of their coping efforts. This heightened emotional response likely contributed to a greater reliance on maladaptive coping strategies, such as social withdrawal, compared to their lower-anxiety counterparts who demonstrated more adaptive coping responses.

High Knowledge With Some Misconceptions About COVID-19

Participants demonstrated generally high knowledge of COVID-19 transmission and prevention, with only a few misconceptions—most notably beliefs in the protective effects of inhaling steamed local herbs. This high level of awareness likely reflects the study context: predominantly older adolescents with secondary education living in Dar es Salaam, where access to mass media and digital information is relatively strong. However, public health messaging that referenced both biomedical measures and local remedies may have inadvertently legitimized partial uptake of unverified practices. Comparable levels of COVID-19 knowledge among adolescents have been reported in Iran and across Sub-Saharan Africa, although misconceptions have not been consistently documented in those settings.^26–29

Experiences of COVID-19-Related Fear and Anxiety

COVID-19-related anxiety was widespread among adolescents living with HIV (AWHIV), reflecting a shared sense of heightened vulnerability regardless of measured anxiety levels. Fears centered on severe outcomes due to HIV status, reinforced by early messaging about risks to immunocompromised groups. Anxiety was further driven by anticipated exposure in public transport and healthcare settings, especially where preventive practices were inconsistent, and by concerns about misdiagnosis or delayed care. Overall, anxiety stemmed from perceived biological risk, environmental exposure, and health system uncertainties, highlighting the need for clear risk communication, consistent prevention measures, and continuity of HIV care during public health crises. Similar patterns have been reported in Sub-Saharan Africa.^30,31

Barriers to HIV Care and ART Adherence

Although earlier survey findings suggested maintained clinic attendance17, AWHIV reported context-specific barriers to HIV care during peak COVID-19 periods, driven by both self-protective behaviors and structural constraints. Transport restrictions, facemask enforcement, and reduced service access disrupted appointments, particularly for adolescents with limited resources. Similar disruptions have been documented in Tanzania and other settings.^30–35

Health system and household challenges compounded these barriers. Intermittent ARV supply disruptions and income loss increased missed doses and food insecurity, undermining adherence. At the same time, fears of COVID-19 exposure, misdiagnosis, and severe illness discouraged care-seeking, consistent with findings from other Sub-Saharan African contexts.^30,31

Facilitators and Coping Strategies for Managing HIV Care Access and ART Adherence

Knowledge of Adherence and Self-Efficacy

AWHIV demonstrated strong self-efficacy alongside a clear understanding of the importance of consistent ART adherence. This combination supported continuity of treatment despite pandemic-related disruptions. These findings are consistent with prior evidence linking self-efficacy to sustained engagement in HIV care in Sub-Saharan Africa.^32,35

Role of Family and Health System Support

Family support—particularly from parents—was central to facilitating access to care, including through financial assistance, transport, adherence reminders, and emotional encouragement. Health system adaptations, such as multimonth ART dispensing and flexible appointment scheduling, further enabled continuity of treatment. Similar enabling roles of family and differentiated service delivery models have been reported in Uganda.³⁶

Adaptive and Maladaptive Coping Strategies Against COVID-19-Related Anxiety

AWHIV employed a range of strategies to manage COVID-19-related anxiety. Adaptive approaches—including problem-solving, social support, and spirituality—helped reduce distress and foster reassurance. Mental health programming should therefore leverage existing social and spiritual resources while strengthening adolescents’ psychosocial coping skills for crisis contexts.

However, notable differences emerged by anxiety level. Adolescents with higher levels of anxiety were more likely to adopt maladaptive coping strategies compared to their lower-anxiety counterparts. While precautionary behaviors were observed across groups, higher-anxiety adolescents more frequently engaged in excessive avoidance, including social withdrawal and self-isolation, which they perceived as protective against infection. These behaviors, though sometimes effective in reducing immediate perceived risk, often reflected heightened and persistent fear rather than adaptive coping. In contrast, adolescents with lower anxiety described similar preventive practices but with less intensity and without enduring distress, suggesting more balanced and adaptive responses.

The reliance on maladaptive strategies such as social withdrawal—although protective in the short term—may increase the risk of loneliness and poorer mental health if prolonged. This underscores the need for accessible, adolescent-responsive mental health screening and referral systems integrated within HIV care, particularly during periods of social disruption. Similar patterns have been reported elsewhere,^37,38 reinforcing the importance of tailoring interventions to adolescents’ anxiety levels and coping profiles.

Limitations of the Study

This study has some limitations. The use of purposive sampling may have introduced selection bias, as participants more engaged in care or willing to share their experiences might be overrepresented, and it was not designed for saturation. Consequently, the findings may not fully capture the perspectives of adolescents who were less connected to health services or who experienced more severe disruptions during the pandemic. However, while saturation was not formally assessed, recurring themes were observed across participant groups, suggesting sufficient depth to support the study's conclusions.

Social desirability bias may also have affected responses, with some adolescents possibly portraying greater adherence or resilience than was the case. Moreover, the urban study setting limits the transferability of findings, as adolescents in rural areas may face different barriers and coping experiences during the pandemic. Like all qualitative studies, the barriers and any disruptions in care were self-reported and were not verified from other sources.

Finally, this study was conducted after COVID-19 transmission had declined and control measures were relaxed, which may have introduced recall bias. Nevertheless, research indicates that emotionally salient experiences, such as fear on crowded buses or in clinics, are generally well remembered, while less central events may be recalled less accurately.³⁹

Conclusions

This study shows how adolescents living with HIV managed pandemic-related challenges and the factors that bolstered their resilience. It also identifies key considerations for strengthening care and support systems in future public health emergencies. This section summarizes the study's main findings, implications, and recommendations.

Key Findings

Adolescents living with HIV (AWHIV) demonstrated generally good knowledge of COVID-19 and its prevention, though some misconceptions persisted. Many experienced COVID-19-related fear and anxiety, including worries about infection risk, uncertainty about protection measures, and fear of receiving inappropriate care outside their HIV clinics. Prevention measures such as restricted transport, mask mandates, and self-isolation sometimes hindered timely access to HIV care. Additional barriers to ART adherence included drug supply disruptions and food insecurity. Despite these challenges, adolescents showed resilience through strong knowledge of ART importance, self-efficacy, and benefits from multimonth drug refills. They coped with anxiety by practicing self-protection, seeking family and spiritual support, and using problem-solving strategies to stay safe and ART adherent.

Implications

The identified mitigation mechanisms help explain our survey findings,¹⁷ which found low rates overall of COVID-19 anxiety and no association between levels of this anxiety and either visit adherence or viral suppression. The results highlight the importance of ensuring good knowledge, supporting self-efficacy, and identifying sources of social support to ensure resilience of all AWHIV during future pandemics and other shocks to the health care system and society.

Recommendations

The findings highlight several policy and programmatic priorities for strengthening HIV care for adolescents during public health emergencies. First, although adolescents demonstrated high COVID-19 knowledge, the persistence of localized misconceptions underscores the need for clear, consistent risk communication that explicitly distinguishes evidence-based guidance from unverified practices. Public health messaging should be adolescent-friendly, context-specific, and coordinated across government and media platforms to reduce confusion during health crises.

Second, disruptions to HIV care during peak COVID-19 periods point to the importance of pandemic-resilient HIV service delivery models. Policies should prioritize continuity of ART through strengthened supply chain management, routine implementation of multimonth ART dispensing, and flexible appointment systems that reduce facility congestion while maintaining access. Ensuring the free provision of personal protective equipment at health facilities and facilitating safe, affordable transport options for adolescents could further mitigate access barriers.

Third, economic and food insecurity emerged as important indirect threats to ART adherence. These findings support greater integration of HIV services with social protection mechanisms, including food assistance and economic support for vulnerable households, particularly during periods of widespread economic disruption.

Fourth, the central role of families—especially parents—in supporting adolescents’ adherence and clinic attendance suggests the need for formal recognition and integration of caregivers within adolescent HIV care models. Programs should equip caregivers with accurate information, adherence support skills, and psychosocial resources to sustain adolescent engagement in care during crises.

Finally, COVID-19-related anxiety influenced care-seeking behaviors and coping strategies, highlighting the importance of integrating mental health support within adolescent HIV services. Screening for anxiety, provision of basic psychosocial interventions, and referral pathways for more intensive mental health care should be strengthened, with particular attention to preventing prolonged maladaptive coping such as social withdrawal.

Together, these implications emphasize the need for holistic, adolescent-centered HIV policies that combine biomedical continuity, psychosocial support, family engagement, and social protection to safeguard treatment outcomes during public health emergencies.

Supplemental Material

sj-docx-1-jia-10.1177_23259582261446450 - Supplemental material for Experiences of Adolescents Living With HIV During the COVID-19 Pandemic in Dar es Salaam, Tanzania: A Qualitative Study

Supplemental material, sj-docx-1-jia-10.1177_23259582261446450 for Experiences of Adolescents Living With HIV During the COVID-19 Pandemic in Dar es Salaam, Tanzania: A Qualitative Study by Tumaini Nyamhanga, David Gitagno and Rachel Mtei, Matthew Caputo, Sylvia Kaaya, Claudia Hawkins, Lisa R Hirschhorn in Journal of the International Association of Providers of AIDS Care (JIAPAC)

Supplemental Material

sj-xlsx-2-jia-10.1177_23259582261446450 - Supplemental material for Experiences of Adolescents Living With HIV During the COVID-19 Pandemic in Dar es Salaam, Tanzania: A Qualitative Study

Supplemental material, sj-xlsx-2-jia-10.1177_23259582261446450 for Experiences of Adolescents Living With HIV During the COVID-19 Pandemic in Dar es Salaam, Tanzania: A Qualitative Study by Tumaini Nyamhanga, David Gitagno and Rachel Mtei, Matthew Caputo, Sylvia Kaaya, Claudia Hawkins, Lisa R Hirschhorn in Journal of the International Association of Providers of AIDS Care (JIAPAC)

Supplemental Material

sj-docx-3-jia-10.1177_23259582261446450 - Supplemental material for Experiences of Adolescents Living With HIV During the COVID-19 Pandemic in Dar es Salaam, Tanzania: A Qualitative Study

Supplemental material, sj-docx-3-jia-10.1177_23259582261446450 for Experiences of Adolescents Living With HIV During the COVID-19 Pandemic in Dar es Salaam, Tanzania: A Qualitative Study by Tumaini Nyamhanga, David Gitagno and Rachel Mtei, Matthew Caputo, Sylvia Kaaya, Claudia Hawkins, Lisa R Hirschhorn in Journal of the International Association of Providers of AIDS Care (JIAPAC)

Supplemental Material

sj-docx-4-jia-10.1177_23259582261446450 - Supplemental material for Experiences of Adolescents Living With HIV During the COVID-19 Pandemic in Dar es Salaam, Tanzania: A Qualitative Study

Supplemental material, sj-docx-4-jia-10.1177_23259582261446450 for Experiences of Adolescents Living With HIV During the COVID-19 Pandemic in Dar es Salaam, Tanzania: A Qualitative Study by Tumaini Nyamhanga, David Gitagno and Rachel Mtei, Matthew Caputo, Sylvia Kaaya, Claudia Hawkins, Lisa R Hirschhorn in Journal of the International Association of Providers of AIDS Care (JIAPAC)

Footnotes

Abbreviations

Acknowledgments

Thank you to all the AWHIV who participated in this study. We would like to acknowledge the research assistants who worked diligently throughout the data collection period.

ORCID iDs

Tumaini Nyamhanga

David Gitagno

Rachel Mtei

Matthew Caputo

Lisa R Hirschhorn

Ethical Approval and Informed Consent Statements

Ethical approval for this study was granted by the Muhimbili University of Health and Allied Sciences (MUHAS-REC-02-2022-954) and the National Institute of Medical Research (Reference NIMR/HQ/R.8a/Vol. IX/4054) in Tanzania and by Northwestern University in the United States. All study participants provided written informed assent (15-17 years) or consent (18 years and older) before data collection.

Author Contributions

TN drafted the manuscript. TN, DG, and SK reviewed the transcripts and assigned codes to excerpts. CH and LRH conducted extensive reviews of the excerpts, themes, and subthemes. TN, DG, SK, CH, RM, MC, and LRH worked together to refine emergent themes and subthemes.

Funding

The authors disclosed receipt of the following financial support for the research, authorship, and/or publication of this article: Research reported in this publication was supported by the Fogarty International Center of the National Institutes of Health under Award Number D43TW010946. The content is solely the responsibility of the authors and does not necessarily represent the official views of the National Institutes of Health.

Declaration of Conflict of Interests

The authors declare no potential conflicts of interest concerning the research, authorship, and/or publication of this article.

Data Availability Statement

The data that supports the findings of this study are available on request from the corresponding author (TN).

Supplemental Material

Supplemental material for this article is available online.

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