Challenges to Children’s Antiretroviral Therapy Adherence: Views and Experiences of Mothers Living with HIV

Highlights

Public health relevance—How does this work relate to a public health issue?

• Children’s ART adherence is shaped not only by their willingness to take medication, but also by maternal, family, social, and economic circumstances that can contribute to missed or delayed doses and other treatment disruption.
• Mothers living with HIV may simultaneously manage their own lifelong treatment and their children’s ART, creating interconnected treatment and caregiving challenges that can make sustained adherence more difficult within the mother–child dyad.

Public health significance—Why is this work of significance to public health?

• This study provides new evidence from Indonesia on the experiences of mothers living with HIV who are responsible for maintaining ART adherence among children living with HIV.
• The findings show mothers’ perceptions of how children’s treatment resistance, HIV non-disclosure, stigma, maternal guilt and emotional distress, limited social support, and financial insecurity can interact and make it more difficult to maintain children’s ART routines.

Public health implications—What are the key implications or messages for practitioners, policy makers and/or researchers in public health?

• Paediatric HIV programs should consider family-centred approaches that integrate age-appropriate disclosure counselling, maternal mental-health support, mother–child adherence counselling, and peer and family support.
• Policies and services should consider reducing practical treatment barriers through flexible or differentiated ART delivery and greater social and economic support, while future research should examine maternal and child treatment as interconnected rather than separate processes.

Abstract

Antiretroviral therapy (ART) has transformed HIV into a manageable chronic condition; however, substantial gaps in ART adherence persist among children living with HIV (CLHIV), particularly in low- and middle-income countries. This study explored challenges faced by Indonesian mothers living with HIV in supporting and maintaining their children’s ART adherence. A qualitative study was conducted with 23 mothers living with HIV who cared for their CLHIV in Yogyakarta, Indonesia. Participants were recruited using snowball sampling and took part in individual in-depth interviews conducted face-to-face or through WhatsApp video calls. Data were analysed thematically using a qualitative analysis framework. The findings showed three interrelated groups of challenges. Child-related challenges included questioning the need for and benefits of daily ART, treatment fatigue and refusal, comparisons with peers, and competing everyday routines. Mother-related challenges included uncertainty about discussing HIV status and ART with children, fear of stigma and unintended disclosure, guilt related to vertical HIV transmission, illness, psychological distress, emotional exhaustion, and employment demands. Socioeconomic challenges included limited support from spouses and families, bereavement or spousal abandonment, HIV-related secrecy, unemployment, financial insecurity, and transport costs. These circumstances sometimes contributed to delayed medication collection, missed or delayed doses, other treatment disruptions. The findings suggest that children’s ART adherence was shaped by interconnected child, maternal, family, and socioeconomic circumstances rather than by children’s behaviour alone. Family-centred HIV services could consider age-appropriate disclosure support, maternal mental-health care, strengthened social support, flexible treatment delivery, and socioeconomic assistance as potential strategies to support mothers’ capacity to sustain children’s long-term ART adherence.

1. Introduction

Antiretroviral therapy (ART) has transformed HIV infection from a fatal infection into a manageable chronic condition as it helps suppress viral replication, reduce HIV-related morbidity and mortality, prevent transmission, and improve the quality of life of people living with HIV (PLHIV) [1]. However, substantial gaps remain across the global HIV treatment cascade as not all PLHIV know their status and receive treatment or ART [2]. Of the estimated 41 million PLHIV in 2025, 88% knew their HIV status, 89% of those who knew their status accessed ART, and 95% of those on ART achieved viral suppression, which is still below UNAIDS 95-95-95 targets [2]. The percentage is even lower among children, at 64-84-85 of an estimated 1.3 million children aged 0–14 years living with HIV globally [2]. These figures show substantial gaps and inequities in diagnosis, linkage to ART, availability and coverage of ART, treatment use and adherence, and viral suppression among children [2].

ART use and adherence among children are strongly determined by the roles of parents, caregivers, or guardians in obtaining medicines, preparing age-appropriate doses, administering and supervising ingestion, attending clinic appointments, collecting refills, and communicating with healthcare providers [3,4]. However, studies in different settings have reported that parents, caregivers and guardians often encounter various interrelated challenges or difficulties in maintaining children’s ART adherence [4,5]. Medication-related difficulties, including high pill burden, side effects, unpleasant taste, large tablets, and limited availability of formulations suitable for young children, are among the challenges facing them [6,7]. The challenges can also come from the children themselves, such as children refusing, spitting out or vomiting medicines, feeling tired of routine medication, questioning the purpose of taking medication when their diagnosis has not been disclosed, or missing doses when they are not at home or away from parents, caregivers or guardians or are at school, travelling, or playing [8,9]. On the caregivers’ side, the challenges include forgetting doses, experiencing disrupted routines, feeling overwhelmed with responsibilities at home and workplace, having limited knowledge of ART, or experiencing illness, psychological stress, treatment fatigue and insufficient social support [4,10,11]. In some settings, structural and health system-related factors such as poverty, food insecurity, financial hardship, costs associated with access to treatment, long travel distances, time away from paid work, frequent refill visits, long waiting hours, medicine stock-outs, and inadequate counselling are challenges faced by caregivers in maintaining children’s ART and adherence [7,10,12]. Stigma, discrimination and fear of involuntary disclosure are social factors that often lead families to hide medicines, avoid nearby services, withhold the child’s diagnosis from others, and delay treatment initiation and adherence [11,12].

Despite the aforementioned determinants of children’s ART adherence reported in the global literature, the evidence remains limited in its attention to the lived experiences of parents and is fragmented across mixed groups of biological and non-biological caregivers [4,6,13]. Evidence from Indonesia is also very limited, with only a small case study involving four mothers and one uncle reporting on challenges encountered in children’s ART [14]. Meanwhile, two other studies of mothers living with HIV and family caregivers of children with HIV focused primarily on the mothers’ coping strategies for HIV-related mental health challenges and the broad caregiving burden among family caregivers [15,16]. These studies provide important contextual knowledge, yet there is still a paucity of evidence globally and in Indonesia in particular on how parents living with HIV experience and navigate various challenges in supporting and maintaining their children’s routine ART use and adherence. This study addresses this gap using Indonesian mothers’ perceptions and experiences of challenges they face while supporting their children’s ART. Understanding these challenges can help inform the development of family-centred and contextually appropriate policies and practices to support parents and ART use and adherence among children. The practices may include tailored adherence counselling, maternal mental-health support, disclosure guidance, peer and family support, child-friendly treatment delivery, flexible refill systems, and social or economic assistance that strengthens both maternal caregiving capacity and children’s long-term treatment outcomes [1,3].

2. Methods

2.1. Study Setting

The study was conducted in Yogyakarta municipality, one of five administrative districts in the Special Region of Yogyakarta province, Indonesia. The city covers approximately 32.5 km² and has a population of 402,679 [17]. The number of HIV cases was reported to be 1779 at the beginning of 2025, which contributed to a total of 8627 HIV cases in the province, of which 219 cases were diagnosed among children aged 0–14 years [18]. HIV-related services available in Yogyakarta municipality include HIV testing and counselling, ART, HIV education or information sessions, and clinical monitoring such as CD4 count, viral load, liver function, and kidney function testing. At the time of the study, these services were provided through four hospitals and ten community health centres [19].

2.2. Study Design

A qualitative study was conducted to explore mothers’ mental health challenges, associated factors, coping strategies, and the challenges they experienced in supporting their children’s ART [15]. Drawing from the same data, the present paper is analytically distinct and focuses specifically on mothers’ perceptions and experiences of challenges in supporting and maintaining their children’s ART routines, an aspect that was not the analytic focus and has not been previously reported as a standalone set of findings. This focused analysis uses interview material relevant to children’s ART administration, treatment questioning or refusal, medication collection, disclosure dilemmas, and the maternal, family, social, and economic circumstances surrounding these experiences. A qualitative design was considered appropriate because it facilitated an in-depth exploration of mothers’ personal experiences, perceptions, caregiving practices, and the social and healthcare contexts influencing their ability to support and maintain their children’s ART. This approach also allowed participants to describe sensitive and complex experiences in their own words.

2.3. Participant Recruitment and Data Collection

Participants were mothers living with HIV who had and cared for children living with HIV. Prior to participant recruitment, the head of an HIV clinic and a peer supporter for PLHIV, locally known as a pendamping orang dengan HIV/AIDS (pendamping ODHA), who was also living with HIV, in the study setting were approached to solicit their support to display or post the study information sheets on their information boards. Upon their agreement, the study information sheets containing the researcher’s contact details were displayed at the clinic’s information board and circulated through a WhatsApp group for PLHIV by pendamping ODHA. Their role was to assist by making the study information available and accessible to any potential participants rather than directly identifying or approaching mothers. Mothers who contacted the researcher and confirmed their interest were assessed for eligibility and invited to participate in an interview at a time and venue agreed upon by both the participant and the interviewer. This was followed by the snowball sampling technique through which participants who had been interviewed were asked to provide referrals or share the study information with potentially eligible women in their networks.

The inclusion criteria were aged 18 years or older, living with HIV, and having at least one child living with HIV. Twenty-three mothers, aged 24–43 years, participated. Most had completed junior or senior secondary education and were engaged in various forms of employment, and eight were housewives or unemployed. All mothers and their children living with HIV were receiving ART at the time of the study. Each participant had one child living with HIV, while nine also had one or more children without HIV. The 23 CLHIV were aged 1–13 years: eight (35%) were aged 1–5 years, 11 (48%) were aged 6–10 years, and four (17%) were aged 11–13 years; eight (35%) were male, and 15 (65%) were female. Their education levels varied: five (22%) were not yet in school, six (26%) were in kindergarten, 10 (43%) were in primary school, and two (9%) were in junior high school. More detailed clinical characteristics, including age at diagnosis, duration and regimen of ART, formulation, virological results, and living arrangements, were not systematically collected for this analysis. Most mothers described themselves as administering or directly supervising their children’s ART, particularly because most children had not yet been informed of their HIV status. Further participant and child characteristics are presented in Table 1.

Table 1. Characteristics of participants.

Mothers Living with HIV
Characteristics	N = 23
Age
24–30	10 (43%)
31–40	12 (52%)
41–43	1 (5%)
Marital status
Married	15 (65%)
Widowed	5 (22%)
Never married/single	3 (13%)
Education
University	3 (13%)
Senior high school	16 (70%)
Junior high school	4 (17%)
Employment status
Employed	15 (65%)
Unemployed	3 (13%)
Housewives	5 (22%)
Duration of Living with HIV (year)
1–5	7 (31%)
6–10	12 (52%)
11–13	4 (17%)
Children Living with HIV
Characteristics	N = 23
Age (year)
1–5	8 (35%)
6–10	11 (48%)
11–13	4 (17%)
Sex
Male	8 (35%)
Female	15 (65%)
Education
No yet	5 (22%)
Kindergarten	6 (26%)
Primary school	10 (43%)
Junior high school	2 (9%)

Data were collected between June and September 2019 through individual, in-depth interviews conducted either face-to-face or through WhatsApp (version 2.19.352) video calls, according to each participant’s preference and availability. Data collection was carried out by the researcher (NKF) with support from a trained research assistant (RA). NKF holds a PhD in Public Health, has formal training in qualitative methods, and has more than ten years of qualitative research experience on HIV and other public-health topics involving marginalised populations. The RA is a physician and lecturer with formal training in qualitative and quantitative methods, more than five years of HIV research experience, and more than ten years of professional experience working in the HIV field in different Indonesian settings. Neither interviewer had a prior relationship with the participants, none of the participants knew the researcher or RA before recruitment, and neither interviewer had a clinical role in the participants’ care. Interviews explored mothers’ experiences of establishing and maintaining their children’s ART routines, administering and monitoring medication, responding to missed doses, side effects, or children’s resistance to treatment, attending clinic appointments and obtaining medication refills, managing treatment around school and daily activities, and maintaining confidentiality around the child’s HIV status. Interviews lasted approximately 40–60 min and involved only the interviewer and participant. They were conducted in Indonesian and were audio-recorded with participants’ permission. Field notes were taken when necessary. For both face-to-face and WhatsApp interviews, privacy was protected by ensuring that only the interviewer and participant were present. The interviewers did not observe substantive differences in the openness or depth of accounts by interview mode, although differences in rapport or disclosure associated with modality cannot be completely excluded.

Recruitment was performed through study information displayed at the HIV clinic, circulation through a PLHIV WhatsApp group, and subsequent participant referral rather than from a fixed list of women who were directly approached. Therefore, the total number of potentially eligible women who saw or received the study invitation cannot be specified. All 23 women who contacted the researcher/RA, met the eligibility criteria, and confirmed participation were interviewed; none declined or withdrew. The final sample size was not predetermined numerically. Recruitment, interviewing, and preliminary analysis proceeded iteratively and were guided by the richness and adequacy of the data rather than an a priori numerical target [20,21,22]. After each interview, emerging codes, categories, and patterns were compared with those from earlier interviews using the evolving coding framework and charted comparisons. By interview 20, no substantively new codes were being identified, and the existing categories were sufficiently developed to address the research question and objective. The final three interviews were undertaken to confirm that the range and depth of meanings had been adequately explored; they produced repetition of established patterns and no new codes, categories, or interpretive insights that materially altered the developing themes [21,22]. Recruitment was therefore concluded after interview 23. Saturation was documented through the evolving coding framework, analytic notes, and comparative charts rather than through a separate formal saturation matrix.

Audio recordings were transcribed verbatim. Participants were offered the opportunity to review and correct their transcripts, although none chose to do so. Confidentiality and anonymity were maintained by assigning a pseudonym to each transcript and removing identifying information. Participants were informed that participation was voluntary and that they could withdraw at any time without providing a reason. Written informed consent was obtained before the interviews, either in person or electronically through WhatsApp.

2.4. Data Analysis

Data were coded and analysed manually in Indonesian by NKF, in consultation with the RA. Transcription and preliminary analysis occurred alongside data collection, allowing field notes and emerging observations to be incorporated into the analytical process. Quotes selected for publication were translated into English by the author, who is fluent in Indonesian and English. Throughout the analysis and manuscript preparation, the translated quotes were checked repeatedly against the original Indonesian transcripts to maintain accuracy and preserve participants’ intended meanings [23]. Analysis followed Ritchie and Spencer’s qualitative data analysis framework [24] and was primarily inductive, while the study objective provided a broad sensitising focus for identifying material related to children’s ART routines and reported treatment difficulties. First, familiarisation with the data through repeatedly reading each transcript, breaking down the narratives into meaningful segments (data extracts), and making comments or labels to the data extracts of each individual transcript. At this stage, notes undertaken during interviews were added to each transcript. Thus, the process of familiarisation with the data had been started alongside the data collection process. Second, identification of a thematic framework: key issues, concepts, and recurring ideas emerging from the data were listed to develop an initial thematic framework informed by the study objective. The identification of the thematic framework was an iterative process that involved changing and refining themes. Third, indexing (coding) the data started by providing open codes to data extracts of each transcript, resulting in a long list of open codes. This was followed by close coding to identify similar codes to be combined or collated and reduce the number of codes to a manageable number. They were then compared, refined, and grouped into broader categories, subthemes, and themes. Fourth, the coded data were charted to facilitate comparisons both within individual accounts and across participants. This was performed by reorganising and summarising codes from each transcript, which had been grouped into separate themes in the previous section, and putting them together under each theme. Finally, the data were mapped and interpreted to identify relationships between themes and develop an overall explanation of the challenges mothers faced in supporting their children’s ART. Analysis was iterative rather than strictly linear, with codes and themes continually reviewed and refined. This structured process enhanced the transparency, consistency, and rigour of the analysis [24].

All coding, category development, and theme development were undertaken by the author; no second coder was used, and no formal intercoder-reliability statistic was calculated. Multiple coding and coder-agreement procedures are not universal requirements for quality across qualitative analytic approaches, although they may be useful for particular research designs [25,26]. To strengthen credibility, the analysis used repeated transcript reading, iterative comparison within and across participants, analytic notes, charted comparisons, consultation with the RA, and repeated checking of interpretations and translated quotations against the original Indonesian transcripts and field notes. These procedures provided an audit trail of how categories and themes were developed and revised and supported reflexive scrutiny, transparency, and consistency while recognising the interpretive role of the researcher [25,26].

2.5. Reflexivity Statement

The researcher recognises that qualitative interpretation is shaped by the researcher’s professional experiences, assumptions, and interactions with participants. He carried out the study as a public-health researcher with extensive research experience in various HIV-related topics rather than as a clinician responsible for participants’ treatment. His prior work on HIV stigma, treatment access, and the experiences of marginalised populations provided useful contextual sensitivity but also created the possibility of attending more readily to stigma, psychosocial difficulties, and structural barriers. To manage this, interpretations were repeatedly checked against complete participant accounts rather than selected quotations alone, contradictory or less common accounts were considered during theme refinement, and developing interpretations were also discussed with the RA. The RA’s clinical background and long-standing experience in HIV work in Indonesia provided an additional perspective during these discussions. Because neither interviewer knew participants beforehand or had a clinical role in their care, the interviews were not embedded in a therapeutic or service-provider relationship. Nevertheless, social desirability, the sensitivity of HIV and maternal guilt, and differences between face-to-face and video interaction may have influenced what participants chose to disclose; these possibilities were considered when interpreting the findings.

3. Results

The findings below describe mothers’ self-reported perceptions and experiences of their children’s ART use and adherence. The terms missed doses, treatment refusal, delayed medication collection, and treatment interruption are used only where these specific circumstances were described by participants; they are not treated as interchangeable with objective ART adherence or retention in care. References to periods of poorer adherence reflect mothers’ own descriptions and were not independently verified using pharmacy-refill records, pill counts, electronic monitoring, viral-load results, or other clinical records. Most children were aged 10 years or younger, and mothers described themselves as the main people administering or directly supervising ART for most children. The findings should therefore be interpreted as qualitative accounts of perceived adherence challenges and treatment disruptions rather than objective estimates of ART adherence or causal effects.

3.1. Children-Related Challenges: Constant Questioning of ART and Its Benefits

Mothers’ efforts to maintain their children’s adherence to ART were challenged by behaviours and responses from the children themselves. These included repeatedly questioning why they had to take medication every day, asking to skip doses, complaining about taking medication continuously, and sometimes refusing to take it. Mothers explained that managing these behaviours was particularly difficult because most of their children had not yet been informed of their HIV status, mainly because they were considered too young to understand the diagnosis. Consequently, mothers had to continuously encourage their children to take ART while having limited ability to explain the actual reason why lifelong and consistent treatment was necessary. For example, Silvia and Astri described how their children repeatedly questioned the need for daily medication because they felt healthy and did not understand what benefits the medication provided. Such questions made it difficult for the mothers to convince their children to continue taking ART consistently:

“My child often asks, ‘Why do I have to take this medicine (ART) every day? I feel fine. I’m not sick. What is the benefit of taking medicine regularly?’”.

(Silvia)

“Lately, he (her son) has been complaining, saying, ‘I’m tired of taking medicine every day. Can I skip it today? You can tell the doctor that I’m not sick, so I don’t have to take medicine every day’”.

(Astri)

The children’s questioning seemed to place mothers in a difficult position: they were responsible for ensuring adherence but could not always provide an explanation that their children considered convincing. A similar challenge was described by Retno, whose eight-year-old son sometimes refused to take his medication because he had grown tired of taking it for a long period. His resistance sometimes left her having to choose between allowing him to miss a dose and forcing him to take the medication:

“Sometimes he (her son) says, ‘I don’t want to take the medicine. I’ve been taking medicine for a very long time, so I don’t want it anymore.’ Sometimes I have to agree to let him not take it, but at other times I have to force him to take the medicine”.

(Retno)

Retno’s account illustrates mothers’ perceptions of how children’s treatment fatigue could make it more difficult to maintain consistent medication routines or ART adherence. Persistent refusal created situations in which mothers had to negotiate, persuade, or pressure their children to take medication. At times, mothers reported that these efforts were unsuccessful, which ultimately contributed to missed doses. Several mothers also described children’s questioning and resistance in the context of comparisons with peers. As children interacted with friends and became aware that other children did not take medication every day, some began to question why they were required to follow a daily medication regimen and asked their mothers whether they could stop or skip their ART:

“My daughter sometimes goes to her friend’s house, and they do their homework together. She once told me that her friend does not take medicine every day. Because of that, she asks why she has to keep taking medicine and sometimes asks to stop or skip it”.

(Enda)

“My child told me that her friends don’t take medicine regularly as she does, so I thought, ‘Oh, that means she has talked to her friends about her medication.’ That puts me in a difficult position when she keeps asking not to take it”.

(Betty)

Children’s everyday routines and activities were also described as complicating medication schedules. Mothers described situations in which children fell asleep before their scheduled evening dose or returned home late after playing with friends, contributing to delayed or missed medication:

“My child usually takes the medicine at 8 p.m. before going to bed. Sometimes she falls asleep before 8 p.m., and that is one of the reasons she misses her medication”.

(Ayu)

“You know how boys are. Sometimes after school he comes home, eats, changes his clothes, and then goes out to play with his friends. By the time he comes home, several hours have passed since he was supposed to take his medicine, and then he doesn’t want to take it anymore. He has all sorts of reasons”.

(Anti)

The mothers’ accounts show that maintaining children’s adherence to ART required continuous monitoring, reminding, negotiation, persuasion, and, at times, pressure. Mothers described limited understanding of why ART was necessary, perception of being healthy, treatment fatigue, comparison with peers, refusal to take medication, and competing daily activities as circumstances that made supervision more difficult and were sometimes accompanied by missed doses.

3.2. Mother-Related Challenges in Maintaining Children’s ART Adherence

3.2.1. Difficulties and Dilemmas in Discussing HIV Status and ART with Children

Mothers also described challenges arising from their own uncertainty about whether, when, and how to disclose their children’s HIV status and explain the purpose of ART. This became particularly difficult when children repeatedly questioned why they had to take medication or refused to take it. Mothers were concerned that younger children might not understand HIV and might disclose their diagnosis or treatment to friends without appreciating the possible social consequences. As a result, they sometimes felt they did not have convincing explanations available when trying to maintain their children’s adherence:

“I just don’t know how to tell my son (about his HIV status) because he is still little, eight years old. He can’t understand the complex issue around HIV. He may go and tell his friends that he has HIV without knowing the negative consequences he may face. No one can guarantee that he will keep it secret. It has been very stressful for me because he keeps asking why he needs to take the medicine every day. He complains a lot and sometimes cries and refuses to take the medicines”.

(Fatima)

Mothers’ concerns about disclosure were reinforced by personal experiences and observations of HIV-related stigma and discrimination. They feared that accidental disclosure could have consequences not only for their children but also for themselves and other family members:

“We (the woman and her HIV-positive son) experienced negative treatment once at the hospital. We were not served; my son was not allowed to use the toilet at the hospital. … There are many kids (living with HIV) who receive negative treatment from their friends at school or within communities. I don’t want him to feel broken if this happens to him. … I don’t want to talk to him about his HIV status and the treatment; I have to keep this secret. He is not ready for this. I don’t want him to experience the same treatment we faced a few years ago. That’s why when he refuses to take medicine, I sometimes say Okay”.

(Ratih)

These narratives highlight a tension between protecting children from stigma and giving them enough information to understand their treatment. Mothers described uncertainty about disclosure to the child as making it more difficult to respond when children resisted ART. In some circumstances, protecting confidentiality was prioritised in the moment, and mothers reported that a dose was then missed. This should not be interpreted to mean that non-disclosure itself caused poor adherence; rather, disclosure was experienced as a clinical and psychosocial dilemma within a stigmatising environment.

3.2.2. Mothers’ Guilt, Illness, Emotional Distress and Exhaustion

Mothers further described emotional conflicts that sometimes reduced their ability to enforce their children’s treatment. Some felt deep sympathy for children who had to take medication every day and found it difficult to refuse requests to skip a dose. Others expressed guilt because their children had acquired HIV through mother-to-child transmission, which they perceived as an undeserved lifelong burden:

“I often feel sorry for my child. Seeing her take medicine every day sometimes makes me cry when I’m alone. I feel that it is too much for her. Sometimes she says, ‘Mum, can I not take the medicine today?’ and I don’t have the heart to say no”.

(Marni)

“I feel guilty for what he (her son) is going through and will be facing in his entire life. It is not his fault, and he is not supposed to carry this burden”.

(Fatima)

These feelings sometimes made mothers less able to insist on strict adherence when children resisted medication. Rather than reflecting a lack of commitment to ART, their responses appeared to arise from emotional distress and compassion for what they perceived as the burden imposed on their children. For some mothers, guilt occurred alongside their own HIV-related illness, psychological distress, and exhaustion. Poor physical or emotional health sometimes reduced their capacity to collect medication on time or consistently supervise their children’s treatment:

“These feelings: afraid, sad, worried, stressed, guilty, don’t go away. … It is my mistake that I transmitted HIV to her; she doesn’t deserve this. I try to put her health as my priority, but sometimes I feel sick, mentally not okay, and exhausted from what my daughter and I are going through every single day. … Sometimes I did not collect the medicines, not because I did not want to, but because I was not okay”.

(Wati)

This account illustrates that although children’s health was prioritised, mothers perceived their own illness, distress, and caregiving fatigue as circumstances that reduced their capacity for the continuous work of medication collection, reminding, and supervision. Employment demands were described as an additional challenge. Some mothers reported delaying medication collection because they could not leave work or were reluctant to repeatedly request permission. They also described the need to conceal their HIV status at work because of fear of stigma, discrimination, or job loss:

“Sometimes I delay collecting the medicine because I have to work. I don’t want to keep asking for permission because eventually people might become suspicious. So, yes, sometimes because of this we become less adherent or miss taking the medication”.

(Ika)

Mothers’ narratives above show that their ability to maintain their children’s ART adherence was constrained not only by children’s behaviour but also by disclosure dilemmas, fear of stigma, guilt, their own physical and mental health, emotional exhaustion, and employment pressures. These challenges could reduce mothers’ ability to explain the importance of ART, obtain medication on time, supervise treatment consistently, or insist on adherence when children resisted taking their medicines.

3.3. Socioeconomic-Related Challenges to Maintaining Children’s ART Adherence

3.3.1. Limited Social Support from Spouses and Families

Several mothers described receiving little social and emotional support from people close to them, including spouses and extended family members. This lack of support affected both their own treatment and their ability to maintain their children’s ART. Mothers who had been abandoned by their spouses or whose spouses had died described feeling that they were managing HIV, childcare, and treatment responsibilities alone, which at times contributed to poor adherence. Indah, whose spouse had left her and her daughter, described the emotional burden of having to manage both her own HIV care and her child’s treatment without spousal support:

“At first, I felt completely alone. I had to take care of my daughter and myself without any support from my spouse, who had left us. Emotionally, I felt very isolated. At that time, I had not really accepted our situation either. My daughter and I were not at fault. I got HIV from her father and then transmitted it to her. Because of all this, in the beginning neither my daughter nor I were very adherent to treatment”.

(Indah)

A similar experience was reported by mothers whose spouses had died from HIV-related illness. Silvia explained that grief and the sudden loss of practical and emotional support disrupted both her own and her child’s treatment:

“My son and I are adherent now, but previously we often neglected our treatment, particularly after my spouse passed away, because the situation was very difficult for me. I often forgot, or perhaps I just did not care enough at that time, to collect medicines from the clinic for both of us. Even when we had the medicines, sometimes neither of us took them. Losing my spouse and having to manage everything without his support was very hard”.

(Silvia)

Support from extended family was also limited for some mothers. This occurred when relatives rejected or distanced themselves from the family because of HIV, or when mothers deliberately concealed their own and their children’s HIV status because they feared negative reactions:

“I haven’t told my parents, siblings, or other relatives about our HIV status (hers, her spouse’s, and her daughter’s) or our treatment. I am afraid they will react negatively. So, I receive no support from them. Sometimes we face difficulties, and there is no one to help us, including with treatment, and that is why sometimes we are not adherent”.

(Julia)

3.3.2. Economic Challenges in Maintaining Children’s ART

Financial hardship was another important barrier to maintaining children’s ART. Although ART itself was provided without charge, unemployment and unstable income made it difficult for mothers to afford transport and other costs associated with attending clinics and collecting medication:

“What makes me stressed is that I don’t have a job and have no income at all. I always think about what I will do if she (her daughter) becomes sick or needs to be admitted to hospital. So far, we (the woman and her daughter) rely on financial support from my parents. … Financial difficulties sometimes make me late or delay collecting the medicines because I have no money for transport and other expenses”.

(Kana)

Economic insecurity also seemed to make them anxious about the negative future consequences for their families, which also appeared to shift or influence their focus on treatment. This is reflected in the story of Yanri, a mother of a 9-year-old son living with HIV:

“We (the woman and her HIV-positive husband) are always trying to prepare ourselves and think about what we will do if our son becomes ill, and this is stressful because I do not have a permanent job and depend entirely on my husband. … It would be great if we could just focus on the treatment without worrying about what will happen tomorrow. It is difficult.”

The quotes show that mothers’ perceptions of capacity to maintain children’s ART routines and adherence were shaped by the social and economic resources available to them. Loss of spousal support, limited family assistance, HIV-related secrecy, unemployment, and financial insecurity increased mothers’ emotional and practical burdens and were reported alongside delayed medication collection, missed doses, and periods participants described as poorer adherence for both mothers and children.

4. Discussion

This study presents mothers’ accounts of three interconnected challenges: child-related treatment difficulties, maternal circumstances, and family or socioeconomic conditions that made it more difficult to maintain their children’s ART use and adherence. The contribution of the study lies in showing how the challenges or barriers converged within mother–child dyads in which both mother and child were living with HIV and required lifelong treatment. This enriches previous studies that have reported some of these challenges individually [4,7,8,9,10,11,12]. Children’s questioning or refusal, maternal uncertainty about disclosure, stigma, guilt, and psychological distress, employment demands, limited family support, and financial hardships were often described as connected experiences rather than isolated events. These accounts support a social-ecological interpretation in which treatment practices are shaped by interacting individual, interpersonal, organisational and structural conditions [27]. Because adherence was not objectively measured, the findings should be understood as mothers’ perceptions of circumstances associated with missed or delayed doses, delayed collection, and treatment difficulty rather than evidence that any single factor caused non-adherence.

The child-related findings are consistent with previous findings reporting treatment fatigue, medication refusal, forgetfulness, and disrupted routines as challenges or barriers to paediatric ART [7,8,9,10]. In the current study, however, these experiences need to be interpreted in relation to developmental stage. The children were 1–13 years old, and most were 10 years or younger, so medication administration remained largely caregiver-dependent. Mothers described directly administering or supervising ART, and most children had not yet been informed of their HIV status. Thus, questioning and treatment fatigue were experienced by mothers in a context where children had limited information and limited autonomy over treatment. The small number aged 11–13 years means that the study provides only limited insight into older adolescents’ autonomy, confidentiality concerns, transition toward self-management, or transfer to adolescent/adult services. These issues warrant dedicated research with adolescents themselves as well as caregivers [28].

This study highlights disclosure as a complex clinical and psychosocial dilemma rather than a simple barrier. Mothers were primarily describing disclosure of HIV status of the child and their fear that the child might then disclose the diagnosis or treatment unintentionally to peers or other people. Their caution was reinforced by their personal experience of HIV stigma and discrimination against PLHIV, which are still prevalent within communities in the study setting [29,30,31]. In such a context, delaying disclosure may be understood as an attempt to protect the child and family from anticipated social harm, even though having limited information about HIV and ART could also make treatment questioning harder for mothers to address. The WHO guidance therefore recommends developmentally appropriate, supported disclosure that considers age, maturity, family circumstances, psychosocial readiness, and social support [32,33]. The current study did not systematically distinguish disclosure to relatives, schools, peers, other caregivers, and the child, so the findings should not be generalised across all forms of disclosure. Instead, they point to the need for services that help caregivers weigh the potential benefits and risks of disclosure and plan it as a gradual, supported process. The findings underscore the importance of disclosure support, which can also be an important adherence intervention for mothers, because uncertainty about what and how to inform their children regarding HIV status and treatment sometimes left them unable to respond effectively to ART resistance and non-adherence.

This study also highlights how mothers’ HIV-related health and psychological experiences, such as illness (HIV), guilt about vertical transmission, sympathy for the child’s lifelong treatment burden, emotional distress, and exhaustion, acted as challenges that undermined their capacity to support and maintain their children’s as well as their own treatment use and adherence. Previous studies have linked caregiver psychological distress with paediatric ART use and adherence [9,34], and documented emotional and caregiving burdens among mothers and family caregivers of CLHIV [15,16]. The present findings extend this evidence by showing how a dual-treatment burden became a strong challenge for the mothers in maintaining ART use and adherence for their children and themselves. This suggests the importance of understanding pathways influencing paediatric ART use and adherence within families. The findings also support the significance of integrating maternal mental-health care alongside adherence counselling and peer, lay-provider, and community support within paediatric HIV services [35,36].

The findings also demonstrate that socioeconomic challenges further shape the practical conditions in which ART is managed. Spousal death or abandonment, limited family support, unstable employment, transport costs, and fear of workplace disclosure sometimes contributed to delayed medicine collection and missed doses. Similar challenges have been reported in other settings [7,10,12,34]. A notable feature of the present accounts was the way HIV-related secrecy could restrict access to practical and emotional support: mothers who concealed HIV status to avoid stigma could have fewer people available to assist with clinic visits, childcare, transport, or medication reminders. In this sense, stigma may operate indirectly through social isolation and constrained resources as well as through direct discriminatory experiences [30,31,37].

The current findings therefore suggest several potential areas for family-centred support that recognise the interdependence of maternal and child treatment. Current paediatric HIV guidance emphasises that adherence is influenced by child, caregiver, family, psychosocial, and structural factors and recommends involving children and caregivers together in developing feasible treatment and adherence planning [3]. In the context of the present findings, developmentally appropriate disclosure counselling, maternal mental-health assessment and support, joint mother–child adherence counselling, peer and family support, flexible refill or differentiated service options, and attention to transport or other economic barriers are plausible intervention components. These service approaches should therefore be regarded as implications generated from participants’ experiences and existing guidance, and their acceptability, feasibility, and effectiveness should be evaluated in future studies in Indonesia. Strengthening mothers’ physical, psychological, and social capacity to provide care may be an important pathway to sustaining children’s ART adherence, particularly while children remain dependent on caregivers for medication administration [3,9,38].

Strengths and Limitations of the Study

An important strength of this study is its specific focus on mothers who were themselves living with HIV while caring for CLHIV, providing insight into the interdependence of maternal and child treatment that has received limited attention in Indonesia. Several limitations should nevertheless be considered. First, recruitment began through an HIV clinic, a PLHIV WhatsApp group, and subsequent snowball referrals. This strategy was appropriate for reaching a stigmatised population but may have preferentially included mothers already engaged with HIV services and/or peer networks. Mothers who were disengaged from care, socially isolated, not using WhatsApp, or experiencing the greatest difficulties maintaining treatment may therefore have been less likely to participate, creating potential selection bias. Second, the findings rely on a single informant perspective. Children, fathers, other caregivers, healthcare professionals, pharmacy records, and clinical data were not used to triangulate mothers’ accounts. ART adherence was also based on participants’ accounts or not objectively measured using refill records, pill counts, electronic monitoring, or viral-load results; terms such as missed doses and delayed collection therefore reflect participants’ reports. Third, the retrospective and sensitive nature of the interviews creates potential recall and social desirability bias, including possible under-reporting of missed doses, treatment interruptions, stigma experiences, or emotionally difficult caregiving responses. Fourth, although age, sex, and education of the children were available, detailed child-level clinical characteristics such as age at diagnosis, ART duration and regimen, formulation, virological status, exact disclosure status, and living arrangements were not systematically collected, limiting analysis by developmental or treatment characteristics. Fifth, the data were collected in 2019, approximately six to seven years ago. Since then, paediatric ART regimens, formulations, and service delivery models in Indonesia may have changed, particularly following the COVID-19 pandemic. Therefore, some reported treatment-related challenges and experiences may not fully reflect current practices, potentially limiting the applicability of the findings to the present context.

5. Conclusions

This study presents mothers’ perceptions and experiences of multiple interacting challenges they encountered in supporting their children’s ART adherence. These arose from children’s questioning and resistance to treatment, mothers’ difficulties around disclosure and stigma, guilt and emotional distress, their own health and treatment needs, limited family support, and economic and employment pressures. The findings therefore highlight paediatric ART adherence as a family and social process rather than solely an individual child behaviour, particularly for younger children who depend on caregivers to administer or supervise medication. HIV programs could consider family-centred support that assists mothers with developmentally appropriate disclosure, mental-health and psychosocial needs, family and peer support, and practical barriers to treatment access. These approaches should be evaluated in future research, ideally including children and adolescents, other caregivers, healthcare providers, and objective treatment indicators alongside maternal accounts.