The study was conducted at Bamenda Regional Hospital, located in the Bamenda Health District, and Nkwen Baptist Hospital, located in the Bamenda III Health District, respectively, in the North West Region, Cameroon. The Bamenda Health District and the Bamenda III Health District in Cameroon, like many regions globally, face significant public health challenges, one of which is the management and treatment of HIV among various children living with HIV/AIDS. A retrospective review of data in the Bamenda Health Districts from December 2023 to April 2024 revealed 65 primary caregivers of children aged 0 - 9 years who were receiving ART. Out of this number, two (02) deaths have been recorded and two (02) were lost to follow-up, representing 6.7%.

The research objectives were to explore the roles, challenges, and perspectives of primary caregivers of children aged 0 - 9 years living with HIV in two urban hospitals in Bamenda, North-West Region, Cameroon. The two hospitals provide differentiated HIV care services for paediatric and adult populations separately, with places for counselling. The Bamenda Regional Hospital (BRH) has two HIV care centres: one for adults called the Day Hospital and the centre for paediatric clients that cares for children and adolescents aged 0 - 19 years. The Nkwen Baptist Hospital (NBH) has one HIV Treatment Centre that has two subunits and two groups of healthcare providers. The unit for adults provides care to adults only, while the unit for paediatric care provides care to children and adolescents aged 0 - 19 years, as well as adolescents or adults who are parents or caregivers of HIV-exposed children and who are also living with HIV. This study used an exploratory descriptive approach with quantitative methods, based on the interpretivist paradigm. This means it focused on understanding the personal feelings, experiences, and meanings that primary caregivers assign to their role in helping children aged 0 - 9 years living with HIV adhere to their antiretroviral treatment (ART).

The interpretivist approach was chosen because it is ideal for exploring the unique, personal, and socially shaped realities of these caregivers. It prioritizes seeing the world through their eyes and understanding their behavior from their own perspectives.

The study targeted caregivers of CLHIV aged 0 - 9 years in Bamenda Regional Hospital (BRH) and Nkwen Baptist Hospital (NBH), Cameroon. A convenience sample of 64 caregivers was recruited, with 42 (66%) from BRH and 22 (34%) from NBH.

The inclusion criteria were that the person had to be a caregiver of a child living with HIV, the child had to have been taking ART medicine for at least 3 months, and the caregiver had to agree to take part and had to give their informed consent.

The exclusion criteria were anyone who did not want to participate or was unable to take part, for example, because of health, language, or other reasons.

A written consent that explained the purpose of the study was distributed to the study participants and the heads of the clinics. Also, the research principal investigator (PI) and research assistants (RAs) had to explain the purpose of the study to the caregivers before data collection. All these purposively selected primary caregivers consented to the study and were asked to sign the consent forms and went on to participate in the interview. For caregivers who could not read or write, the questionnaire was completed for them after interviewing these parents/caregivers who accompanied these children. However, primary caregivers who were literate were asked to complete the questionnaire in the presence of the research staff, assisted by a nurse who had already been trained for the purpose of this study.

Approval to carry out this study was obtained from the Institutional Review Board (IRB) of The University of Bamenda (Ref: 2022/0704H/UBa/IRB) and the Cameroon Baptist Convention Institutional Review Board (Ref: IRB 202387). Administrative clearance was obtained from the Regional Delegate of Public Health for the North West Region (Ref No 292/ATT/NWR/RDPH/BRIGAD). Administrative authorisation was obtained from the Director of Bamenda Regional Hospital (REF No R005/MPH/RDPH/RHB/369) and the Nkwen Baptist Hospital (Ref. CBC/N- BH/Admin-L/24/05). Before being allowed to access the HIV treatment Centre of the Nkwen District Hospital to pilot the data collection instruments, administrative authorisation had to be obtained from the director of the (REF.NO.I 1/M- PH/RDPH/NDH/195), as well as from the individual caregivers and staff of each paediatric HIV treatment Centre, before any data collection procedure started. All necessary efforts were made to guarantee patient confidentiality throughout the study. The study sample was calculated according to Krejecie & Morgans [42][43]; the required sample size for children was calculated using the formula for estimating a single population proportion for a cross-sectional survey.

Therefore,

Finite population

256 − 196 (children aged 10 - 19 years)

= 60 (CLHIV aged 0 - 9 years.)

Original sample size (n): 60

Anticipated non-response rate (d): 5% or 0.05

Adjusted sample size (N1): 60/(1 − 0.06) = 60/0.94 = 64

Where N (720) is the total number of children and adolescents, or the target population (444 CALHIV at BRH and 276 CALHIV at NBH), attending the two pediatric HIV treatment centres in the two hospitals, n₀ is the required minimum sample size, Z is a standard score corresponding to a 95% confidence level, and is thus equal to 1.96, p is the proportion of awareness, but the information is not available, so 50% (0.5) is assumed to obtain the possible maximum sample size. e is the margin of error and is taken to be 5% (0.05).

The sample size for N (720) children and adolescents living with HIV (CALHIV) was calculated to be 256; children living with HIV (CLHIV) was 60 and adolescents living with HIV (ALHIV) was 196. Since the ratio of respondents in BRH to the respondents in NBHC is 2:1, the same ratio is used to calculate the number of adolescents from each Paediatric Treatment Centre for HIV, which was 40 respondents from BRH and 20 respondents from NBHC, respectively.

A semi-structured questionnaire divided into sections (medication description, adherence measurement, reasons for non-adherence, barriers, and the way forward) was administered by primary caregivers of children taking care of children aged 0 - 9 years. The open-ended questions served as an in-depth interview and supplemented the quantitative data. Tools were in English, with Pidgin translations for non-readers. Data collection spanned July 2023 to December 2024.

An in-depth interview method was employed to collect the data by using a semi-structured interview form. The multiple choice and open-ended questions for the in-depth interview were developed by the research team based on the relevant literature. Table 1 shows samples of the multiple choice and open-ended questions that were used to collect data from the in-depth interview (IDI).

Table 1. Sample Questions from the Semi-Structured Questionnaire considered as IDI.

One of the authors, with prior experience in in-depth interviews (EBD), conducted the face-to-face interviews in the counseling room of the Paediatric HIV Treatment Centre with only the interviewer or Researcher Assistant, who is also the ward charge of the Centre and the participant present, then Research assistants continued the rest of the IDI. Privacy was ensured by assigning an anonymous ID.

Quantitative data were analyzed using SPSS version 25 and STATA. Descriptive statistics, frequencies, and percentages were presented in tables and charts. Bivariate analysis used Chi-square tests for associations (p < 0.05 significance). Roles were measured via self-report of 1-day, 5-day, and 1-week periods, with ≥85% classified as good. The study assessed caregivers’ performance in key roles supporting antiretroviral therapy (ART) adherence for children living with HIV. These roles included acting as medication administrators to ensure no doses were missed; providing monitoring and supervision by tracking schedules, watching for side effects, and ensuring correct dosing; offering emotional support through encouragement and help with illness-related stress; and serving as advocates and educators by attending appointments, collecting medications, communicating with providers, and promoting the child’s needs in family and community settings.

Performance in these roles was measured through caregivers’ self-reports of how well they fulfilled their responsibilities over four recall periods: the past 1 day, past 3 days, past 5 days, and past 1 week. For each period, caregivers reported their performance level as a percentage of the ideal, and a level of ≥85% was classified as “good” for that period.

To determine the final overall classification of “good” adherence, the longest recall period or 1 week was prioritized as the primary measure because it provides a more reliable and representative view of typical behaviour patterns and reduces over-reporting bias. Shorter periods, especially 1 day, were more vulnerable to unusual daily events, while medium periods (3 or 5 days) fell in between. Shorter recalls were considered to have offered greater precision for recent events, which were easier to remember accurately, but longer ones better captured ongoing habits. The final “good” classification required strong performance across multiple periods, with the 1-week report serving as the main criterion of ≥85% = good, supported by shorter periods for added detail, consistency checks, and validation.

Qualitative data underwent thematic analysis, with direct quotations incorporated.

Ethical clearance was obtained from the University of Bamenda Institutional Review Board, with administrative approvals from relevant authorities. Confidentiality was ensured through coding, voluntary participation, and secure data storage.

The perspectives were analyzed using the five-step thematic analysis method. At the beginning of the data analysis process, the principal investigator independently extracted responses for the open-ended questions and linked each to the specific respondents. This was to assure methodological accuracy and ensure that the perspectives correctly represented the statements of the participants. Once the raw data were gathered, three researchers independently created their codes and themes by reading the raw data. Then, they came together and identified the similarities and differences between the themes and subthemes they determined through codes. The researchers used code meanings and code frequencies to assess data saturation. After 60 caregivers were interviewed, it was determined that there was no new code, the data had reached the sample size, it was decided that the data were sufficient, and no more interviews were held. These were shared with the researchers participating in the study (LLN, AMBS) for their opinions and recommendations, and the final revision was made. Each author provided final approval for the publication of this version and agreed to be considered accountable for all aspects of the work.

Table 2. Socio-demographic factors for caregivers and children living with HIV (N = 60).

Sixty primary caregivers or parents participated in this study. Table 2 summarizes data into key findings, identifies patterns, and highlights notable trends across the variables related to health facility, child demographics, caregiver knowledge, and medication practices. It addresses potential implications and suggests areas for further investigation where relevant. For the health facility, 40 (67%) of the caregivers attended BRH, 35 (58%) of the children were <5 years old and 25 (42%) were aged 5 - <10 years, 36 (60%) were female, and 33 (55%) had attained a tertiary level of education. Table 2 shows the sociodemographic factors for caregivers and CLHIV.

The analysis of caregivers’ knowledge of ARV prescription shows that 32 (53%) of them could not name the drug, 45 (75%) could name the dose, 33 (55%) of them were male, and 51 (85%) of the caregivers were not. Other findings revealed that 44 (73%) of caregivers affirmed that the child was on other drugs and 33 (75%) of these could name other drugs that the child was taking, 37 (84%) could name the dose, and 32 (72%) of caregivers could give the time to take the drug. Five (8%) said the child was taking herbal/traditional drugs, and 15% confirmed their child takes herbal teas or is on traditional drug use, while 40% denied it. Table 3 shows caregivers’ factors related to knowledge of ART and other drugs.

Table 3. Factors associated with knowledge of ART and other drugs (N = 60).

The analysis of caregivers’ emotional and psychological support to keep the child healthy revealed that 15 (25%) of the caregivers concentrate on the child’s nutrition, and 9 (15%) of them concentrate on nutrition or give drugs on time, all in an effort to make the child stay healthy in spite of his status of living with HIV. The findings also indicate that 23 (38%) of primary caregivers revealed that mothers are the persons who often administer medicine to the child, and 49 (82%) of respondents revealed that other persons besides caregivers know the child’s HIV-positive status. It was also reported by 32 (53%) of respondents that the child has been informed of his status, and 41 (68%) caregivers always link the child to care and advocate for needs.Table 4 shows factors associated with the roles/involvement of primary caregivers.

Table 4. Factors associated with Roles/Involvement of primary caregivers (N = 60).

Table 5 revealed that 19 (40.4%) of primary caregivers faced the challenge of a child complaining of being tired of taking too many pills every day when not sick, children of 10 (21.3%) of the primary caregivers complained of big pill size/bad taste of the drug, and 4 (8.5%) of participants said children had problems with food/finance/school. Nineteen (32%) of caregivers reported that medicines ever made the child sick/ill or had side effects, and 34 (58%) of respondents had no problems giving medicines. Twenty (34%) of primary caregivers never give medication in front of people, while 4 (44%) of the 9 respondents who never gave medication in front of people said they do so for privacy. Moreover, 43 (72%) of the caregivers reported that there were times the child missed because the caregiver did not have enough food for the family, 14 (23.3%) said they had ever failed to give medicines because of no food, and 37 (62%) of the respondents ever had problems with the child taking medicines. Twenty-three (38%) of primary caregivers reported that they faced challenges giving medicines because the child does not know why they take the drug, 32 (53%) of these caregivers were unemployed, and of the 28 (47%) of them who were employed, 28.6% had part-time employment and casual employment respectively, and 15% of the participants said others besides the caregiver do not know of the child’s HIV-positive status. Table 5shows factors associated with challenges faced by caregivers and children.

Table 5. Factors associated with challenges faced by caregivers and children.

From Table 6, which presents challenges primary caregivers faced that are related to transport, it can be deduced that 22 (36.7%) of primary caregivers took more than one hour to travel to the Paediatric HIV Treatment Centre, 14 (23.3%) spent more than 1000 FCFA as one-way transport cost to reach the Centre, 46 (77%) of the participants had difficulties with transport, with 10 (22%) of caregivers who had difficulties with transport experiencing these difficulties many times, and 18 (39%) of them expressing a lack of money and time to enable them to travel to the paediatric treatment centre. Table 6 shows challenges caregivers faced that are associated with transport.

Table 6. Challenges associated with transport.

Caregivers’ perspectives, as captured in responses to the open-ended questions, revealed a mix of dedication, frustration, and practical concerns. While there are no direct verbatim quotes, the data reflect their voiced experiences through survey responses. These include emotional support and adherence, medication administration challenges, child resistance and side effects, logistical barriers, and support networks.

Emotional support and adherence: Caregivers view their role as holistic, emphasizing nutrition and encouragement. One perspective is seen in 32%, who said they provide a “balanced diet and encouragement” R10, R11, R12, R14_,to keep the child healthy, showing a belief in combining medical adherence with positive reinforcement. Another 25% focused solely on “concentrate on child’s nutrition,” R13, R19, R20, R50, indicating they see food as key to making ART tolerable and effective. See Table 4, which shows factors associated with the roles/involvement of primary caregivers.

Medication administration challenges:Perspectives highlight stigma and secrecy. For example, 44% of those not telling others cited “I do not want others to know,” R47, R48, reflecting fears of judgment or isolation. On assessing perspectives on problems hindering adherence, 30% mentioned “having to take medicines” and 22% of them feared “discrimination and isolation,” R43, R46, R47, R48, R49, R50, R51, R52, R53, suggesting caregivers feel burdened by constant justification and social risks. See Table 5for factors associated with challenges faced by caregivers and children.

Child resistance and side effects:Caregivers express concern over the child’s understanding and well-being. 40.4% noted the child being “tired of taking too many pills every day when not sick,” R7, R11, R16, R20, R23, R25, R36, R42, R47, R48, R53, and in worries causing non-adherence, 23% highlighted the child “asking why taking medicines,” R8, R9, R11, R25, R29, R42, R43, R46, R55, R56, R60, indicating caregivers perceive a need for better age-appropriate explanations. Additionally, 15% pointed to medicines being “too bitter” R6, R16, R36, R42, R43, R46, R47, R48, R51, R52, R53, or causing refusal, showing frustration with drug formulations. See Table 5 that shows factors associated with challenges faced by caregivers and children.

Logistical barriers:Perspectives on transport and resources are pragmatic and highlight inequities. In the family difficulties graph, 27% each cited “no money for transport to clinic” and “no transport to clinic available,” R7, R11, R16, R20, R28, R36, R43, R47, R48, R50, R51, R52, R53 while 18% mentioned “too little/no food to give with medicine.” R3, R5, R8, R11, R12, R16, R17, R22, R24, R25, R30, R49 This reflects caregivers’ view that external factors like poverty and infrastructure undermine their efforts, with 13% in clinic problems noting “no money to purchase medicine” R6, R16, R17, R26, R47, R48, if not free. See Table 6: that shows Challenges Associated with transport.

Support networks:Caregivers’ living situations influence adherence, with 78% reporting that the child is staying with the child’s parents and 38% saying the child stays with a spouse. However, 12% in hindrances mentioned being “discouraged by neighbors/friends/family,” R1, R11, R28, R29, R40, R53,and 7% felt a lack of help from them, suggesting mixed perspectives—family can provide support but also add pressure or disbelief in the need for medicines (7%) of the caregivers.

Overall, caregivers appear committed but overwhelmed, often prioritizing privacy and basic needs while advocating for better clinic support and child-friendly drugs to improve ART adherence. These insights underscore the need for targeted interventions to ease their burdens.

According to Figure 1, which displays six common reasons for a person or caregiver to miss a dose of medication, 34 (57%) complained it was due to forgetfulness, 30 (50%) were too busy, 29 (48%) cited caregiver problems keeping to the time of giving medicines, 20 (34%) did not want to give in the presence of other people, 13 (22%) had no food, and 4 (9%) reported refusal by the child to take. Figure 1 shows the reasons for missed dose.

Figure 1. Reasons for missed doses.

An analysis of the data on Figure 1 reveals the following distribution of worries that caused children not to take medicines as follows: 30% of respondents cited “Forgot to take medicine”, 23% of respondents reported that their children asked why they were taking the medicines, some were tired of taking the medicines, and were playing or at school or work. Twenty-two percent of respondents indicated that they felt better, 17% of respondents said they did not understand the medication instructions, 15% of respondents said the children find medicines “too bitter” and refused to take medicine, 12% of respondents indicated that their child felt ill or was vomiting after taking the drug, 8% of caregivers said their child does not want others to see the medicines, 7% of respondents cited “Has problems with 1 formulation(tablets, liquids)” and “Believes medicine does not help”, 5% of respondents cited other worries such as complaining bitter but will still end up taking the drug, while 3% of respondents said their child cannot take without food. Figure 2 shows worries that caused the child not to take medications.

Figure 2. Worries that caused the child not to take medications.

Figure 3 on problems that hinder caregivers in having a child take medicines shows that 58% reported that they faced none of the problems listed that hinder caregivers in having a child take medicines,30% of caregivers feared discrimination and isolation and that hindered them in having a child take medicines, 22% of the respondents indicated that the child was in school and they did not want the child to be removed from school, 18% of respondents did not want the child to be seen taking medicines, 15% of caregivers could not get to the clinic without others wondering, 12% said they were being discouraged by neighbors/friends/ family, 7% of respondents said they did not receive help from neighbors/friends/ family, and equally others did not believe medicines are needed while 2% of caregivers were unable to explain why the child was taking medicines. Figure 3 shows problems in the community that hinder caregivers in having a child take medicines.

Figure 3. Problems in the community that hinder caregivers in having children take medicines.

As seen in Figure 4, which displays clinic problems that made it difficult for families to give child medication, 71% of respondents reported they had no problem, 16% complained that the staff made them feel harassed, 13% reported that the staff did not explain well enough and equally had no money to purchase medicine respectively, 9% reported that the medicine was not available in the pharmacy, 4% complained that the staff seemed to have a negative/judgmental attitude, while 2% of the caregivers reported other problems, which include the stock-out of antibiotics for opportunistic infections.Figure 4 shows problems at the level of the clinic that made it difficult for families to give the child’s medication.

Figure 4. Clinic problems that made it difficult for families to give child’s medication.

From Figure 5, which presents data on family difficulties related to medicines, 27% complained that they had no money for transport to the clinic or no transport to the clinic was available, 18% of caregivers said they had too little or no food to give with medicine and suffered pouring (vomiting) of medicines, 17% of respondents ran out of medicine before the clinic appointment, 15% of participants said they needed to hide medicines, 13% of caregivers said they had no clean water to use with medicines, and 12% of participants said that the family refused medication.

Figure 5. Family difficulties related to medicines.

Figure 5 shows family difficulties faced by participants that were related to medicines.

From Figure 6 on whom the caregiver and child stay with, it is seen that 78% of the respondents reported they stay with the child’s parents, 38% and 37% of caregivers reported staying with the caregiver’s spouse and the caregiver’s partner respectively, 20% of respondents reported staying with the child’s grandparents, 15% of the caregivers said they stayed with friends, and 12% said they stayed with other children. Seven percent of caregivers reported they and the child stayed with the child’s uncle/aunt/cousins, while 2% of the respondents respectively said they were staying alone and with other persons such as an adopted mother. Figure 6 shows the persons with whom the caregiver and child stay.

Figure 6. Person, caregiver, and child stay with.

From Figure 7, which presents who else, besides the child, is also taking medicines, 78% of the caregivers reported that the child’s parents are taking medicines alongside the child, 38% of the respondents revealed that the caregiver’s spouse is also taking medicines, 37% of the respondents indicated that the caregiver’s partner is also taking medicines, 20% of participants reported that the child’s grandparents are also taking the medicines, 15% of caregivers indicated that friends of the child are also taking ARVs, and 12% reported that other children or siblings of the child are also taking medicines. Seven percent of respondents reported that the child’s uncle/aunt/cousins are also taking medicines, 2% of caregivers stay with no one (stay alone) and would not know the other persons who take the medicine, while another 2% reported other persons taking medicines such as an adopted father. Figure 7 shows other persons who also take medicines or ARVs.

Figure 7. Another person who also takes medicine.

According to Table 7 presenting the association between adherence to ART and some adherence factors, with statistical analysis using Chi-square (X²) tests and corresponding p-values, the primary caregiver involvement showed 51.2% good adherence (21/41) and 48.8% poor adherence (20/41), which is deemed maximum involvement, while 36.8% good adherence (7/19) and 63.2% poor adherence (12/19) is deemed minimum involvement. X² = 0.578, p = 0.447 is not statistically significant. Concerning child age <5 years, 51.4% had good adherence (18/35) and 48.6% poor adherence (17/35).

For the children 5 - < 10 years: 40.0% had good adherence (10/25), 60.0% had poor adherence (15/25).

X² = 0.768, p = 0.381, implying the age difference is not statistically significant.

For caregiver gender: male: 45.5% good adherence (15/33), 54.5% poor adherence (18/33).

Female: 48.5% good adherence (13/27), 51.9% poor adherence (14/27), while X² = 0.043, p = 0.835, meaning gender is not statistically significant.

Concerning whether someone besides the caregiver knows the child is on ARV, those for whom someone knows had 51.0% good adherence (25/49) and 49.0% poor adherence (24/49). Those for whom someone does not know had 33.3% good adherence (3/9) and 66.7% poor adherence (6/9), with X² = 2.620 and p = 0.106, which is not statistically significant.

For the child’s knowledge of taking ARV, the “Child knows” group had 37.5% good adherence (12/32), and 62.5% poor adherence (20/32). The “Child doesn’t know” group had 60.0% good adherence (15/25), and 40.0% poor adherence.

For difficulties with transport to clinic, those who encountered difficulties had 43.5% good adherence (20/46) and 56.5% poor adherence (26/46). Those who encountered no difficulties: 57.1% good adherence (8/14), 42.9% poor adherence (6/14). X² = 0.350, p = 0.370, which is not statistically significant. Table 7 shows the association between adherence to ART and some adherence factors.

Table 7. Association between Adherence to ART and some adherence factors.

Primary caregivers in this study emerged as central figures in the management of childhood HIV, with roles extending beyond mere medication administration to encompass emotional support, advocacy, and coordination of healthcare services. A striking 93% of caregivers reported using reminder systems, with reports of 50% of them using phones or 13% using alarm clocks to ensure timely ART dosing, aligning with their maximal involvement in 68% of cases. This involvement included 38% of mothers administering medications and 54% of other relatives monitoring side effects and providing nutritional support, as evidenced by reports of 32% of respondents emphasizing balanced diets and encouragement. These roles reflect the definition of primary caregivers as unpaid family members or relatives who facilitate well-being through tasks like adherence support, as articulated in the introduction drawing from Yiryuo et al. (2024) [10].

These findings align with a study by Attigah et al. (2025) [24] in Ghana that also described caregivers’ roles as motivational and behavioral strategists, focusing on reminders and emotional encouragement to enhance retention in ART, much like the 93% reminder usage here. Both studies highlight caregivers as advocates linking children to services, with 68% of primary caregivers in this study always facilitating clinic access, akin to Attigah’s emphasis on navigating healthcare systems. The current study’s findings also align with those of another study in the SSA context by Yiryuo et al. (2024) [10] in Ghana, that reported caregivers’ overburdened yet committed roles in emotional nurturing and medication monitoring, mirroring the holistic approach reported by the current study, where 25% of primary caregivers prioritized nutrition alone. These alignments underscore a regional pattern in sub-Saharan Africa where caregivers compensate for systemic gaps, such as limited paediatric formulations, by integrating medical and psychosocial support. These similarities show a common trend across sub-Saharan Africa whereby caregivers make up for weaknesses in the health system, like the lack of child-friendly medicines or limited paediatric formulations, by combining medical care with emotional support or by integrating medical and psychosocial support.

However, differences arise in the scope and intensity of roles. In contrast to this study’s urban Cameroonian focus, where 85% of caregivers were knowledgeable about dosing but only 47% could name drugs, a study by Nasuuna et al. (2019) [23] in Uganda reported higher knowledge levels of over 80% of primary caregivers for drug naming, possibly due to more robust counseling programs. This discrepancy may stem from Cameroon’s sociopolitical instability in the Northwest Region, as noted by Nshomwezi et al. (2023) [44][45], which disrupts education and training. Additionally, while Lahai et al. (2020) [32] in Sierra Leone emphasized caregivers’ roles in disclosure similar to the 53% child disclosure in this current study, their study reported lower emotional support integration, focusing more on logistical tasks. This suggests, in the context of our study, that caregivers’ roles are more emotionally intensive due to stigma reported by 30% of participants, differing from settings with stronger community support networks.

This may be because, in our study, caregivers had to provide more emotional support because 30% of them faced stigma. This finding differs from that reported by Kamphuis AEM et al. (2024) [4], with stronger community help; for example, community health workers (CHWs) from the same villages were used to support caregivers, and the community assisted CHWs with transport to clinics, food parcels, group counselling for caregivers, and teaching kids why they take medicine. The current study also differs from a Ugandan study by Izudi J. et al. (2024) [46], in which young people living with HIV (aged 18 - 24) who were trained as Community Adolescent Treatment Supporters (CATS) visited homes, reminded kids to take medicine, provided emotional support, and linked families to clinics. As a result, caregivers felt less alone, stigma was reduced, and adherence improved because the community was actively involved. The findings of 30% of caregivers having reported stigma in the community moreover, differ from those of qualitative findings involving caregivers of children living with HIV by Pius et al. (2021) [45], who reported several interpersonal, health worker, and health system-level factors that influence ART adherence and VL suppression.

Furthermore, the study found that 73% of children were on additional drugs, with 75% of caregivers demonstrating high knowledge of naming these additional drugs, a finding that aligns with a study carried out in South Sudan by Tong et al. (2020) [36] on monitoring polypharmacy but differs from an Ethiopian study by Gemechu et al. (2023) [25], where caregiver knowledge gaps led to poorer adherence. This shows that caregivers in Cameroon are very good at adapting and finding solutions, and this strength may also come from the helpful education and support they receive at the BRH and NBH paediatric treatment centres.

Overall, these roles position caregivers as indispensable in achieving UNAIDS 95-95-95 targets, yet they reveal a need for tailored training to bridge knowledge disparities.

The challenges identified in this study encompass forgetfulness reported by 57% of caregivers, food insecurity reported by 72% of participants, transport barriers complained of by 77% of the caregivers, and stigma reported by 30% of them. These aforementioned challenges threaten sustainable ART adherence, despite self-reported good adherence by 83% of the caregivers. Child-related factors, such as pill refusal reported by 8.5% of respondents due to taste or size as reported by 21.3%, side effects as revealed by 32% of them reporting illness after taking medications, and the compounded caregiver burdens reported by 62% of the caregivers who were revealed to be struggling to administer drugs. Logistical issues, including travel times over 31 minutes for 78.4% and costs exceeding 300 FCFA for 86.6%, reflect broader resource constraints in SSA.

The primary caregivers in our study cited challenges such as food insecurity, which negatively affected 23.3% of them and was the reason for which the child missed doses of ARVs. Transport challenges were also cited by 27% of the respondents, who said they had no money for clinic visits, similar to this study’s 17% poor adherence.

… akin to this study’s 17% poor adherence. These findings have evident similarities with those of a study carried out in Malawi by Phiri et al. (2025) [18], which cited challenges of food insecurity and transport, linking them to viral non-suppression in children under 9.

The current study’s finding that 23.3% of caregivers skipped doses due to lack of food aligns with the finding by Owens et al. (2024) [20] in the U.S. context, though not in SSA, that echoed food insecurity’s impact on adherence, emphasizing its universal effect in exacerbating caregiver stress. In Ethiopia, Wondifraw et al. (2025) [15] found that non-adherence rates of 35% - 40% were due to forgetfulness and stigma, which is similar to the forgetfulness cited by 57% of caregivers and secrecy cited by 34% of the respondents said to be due to stigma or fears in this current study. These similarities point to systemic issues in low- and middle-income countries (LMICs), where economic vulnerabilities amplify adherence barriers, as per Magura et al. (2025)’s [12] scoping review on SSA ART adherence.

The findings in the current study showed that the drug formulation issues were less emphasized, suggesting they may not be as prominent a challenge in this setting. On the other hand, in the Kenyan study by Finocchario-Kessler et al. (2025) [39], caregiver difficulties mainly focused on issues with paediatric HIV medications, such as their bitter taste, which often led to children refusing to take the medicine, for example, by spitting it out, vomiting, or running away, and this was a major barrier to ART adherence by children. The current study also found that 15% of primary caregivers reported herbal use, considered to be much lower and likely because of urban access to formal healthcare services in Bamenda, which made it easier to get standard treatments without turning to alternatives. This finding differs from the finding of a rural Kenyan study context carried out by Finocchario-Kessler et al. (2025) [39], which found that caregivers relied more heavily on herbal or traditional alternatives for treating children, especially during clinic stockouts when formal HIV medications were unavailable.

Moreover, in this study, clinic unavailability was reported by only 9% of the primary caregivers, which is lower than in rural Kenyan settings, further reducing the need for herbal options.

The current study in Cameroon found that 44% of caregivers reported non-disclosure, which was slightly lower and driven more by general privacy concerns rather than extreme stigma. This suggests Cameroonian caregivers face stigma that is still widespread but less severe, possibly influenced by cultural norms that are more accepting or less openly discriminatory.

This finding differs from a study by Finocchario-Kessler et al. (2025) in Kenya [39] where 50% of cases involved non-disclosure due to intense stigma, in which caregivers avoided sharing the child’s HIV status because of fear of discrimination or social rejection.

The current study, non-disclosure reported by 44% of caregivers, was slightly lower and driven more by general privacy concerns rather than extreme stigma. This may be because Cameroonian caregivers face stigma that is still widespread but less severe, possibly influenced by cultural norms that are more accepting or less openly discriminatory.

The findings of the current study Cameroon show that 70% of primary caregivers faced transport challenges for clinic visits, but the barriers were more complex, as 39% of caregivers cited a combination of lack of money and time constraints. This reflects Bamenda’s urban layout, where clinics are closer, but ongoing instability, for example, the conflict-related disruptions, affects infrastructure, making even short trips unreliable [45].

Similar transport challenges were reported by Yiryuo et al. (2024) [10] in Ghana and affected 77% of caregivers, but their main issue was physical distance to clinics, with less emphasis on other factors like cost or time, as in the case of the current study.

These differences show how local factors like urban access, cultural attitudes, and infrastructure stability shape HIV care challenges beyond just general barriers such as food or transport.

Psychosocial burdens, such as struggling with child non-understanding, were reported by 38% of primary caregivers, aligning with Nabunya et al. (2023) [17] on parenting stress in Uganda, but differing in magnitude, as the Ugandan study caregivers reported higher mental health impacts, possibly due to less facility support than in Cameroon’s hospitals. Water and hygiene issues were reported by 75% of participants in the current study not boiling water, differing from Chongwo et al. (2025) [19] in Kenya, where food insecurity dominated without hygiene emphasis. These challenges collectively underscore the need for integrated interventions, as non-adherence risks virological failure [22] and resistance [24].

Caregivers’ perspectives in this study revealed a blend of commitment and frustration, viewing their roles as holistic yet hindered by external factors. Open responses highlighted dedication to nutrition; 32% of primary caregivers cited a balanced diet and encouragement, and 44% of them cited secrecy for privacy, while 40.4% of the respondents talked of being tired of pills, and 27% cited no transport money, expressing concerns over child resistance and logistical inequities. Overall, they perceived adherence as achievable with support, advocating for child-friendly drugs and clinic improvements.

These findings align with those of qualitative studies, such as a Tanzanian study by Msoka et al. (2025) [16], that captured caregivers’ views on disclosure and stigma, similar to 82% of participants sharing status beyond themselves in the current study, and emphasized emotional reinforcement for adherence. Atanuriba et al. (2021) [11] in Ghana matched the perspectives on nutritional integration as key to tolerance, with primary caregivers seeing food as motivational, like the 25% of primary caregivers focusing on child nutrition. Like the current study, the study by Sensoy et al. (2025) [41] in Türkiye, though non-SSA, shared frustrations with pill burden and side effects, viewing better formulations as essential, aligning with the 21.3% of primary caregivers who reported that their child had complaints about bad taste.

This study’s urban sample, like the study by Pantelic et al. (2024) [48], highlighted privacy over community networks, possibly due to higher stigma in conflict zones.

The current study, unlike the Ugandan study by Nasuuna et al. (2019), [23] where caregivers perceived social support as facilitative, had mixed feelings, with 12% of the participants discouraged by family.

The current study is similar to a Zambian study by Mzyece and Munalula (2025) [49] in that both advocate for decentralized services, but differ in that this study emphasizes transport and food, while the Zambian study focused on viral load access barriers. The current study had perspectives on support networks, with 78% of the primary caregivers living with parents, in contrast to a Ugandan study by Mengesha et al. (2020) [50], where orphan caregivers felt more isolated, suggesting familial structures in Cameroon provide resilience despite burdens.

These insights inform primary caregiver-centered models, as per Kamphuis et al. (2024) [4], emphasizing motivations arising from personal convictions and necessities.

This study has several limitations. The convenience sampling of 60 caregivers from two urban hospitals may limit generalizability to rural or other Cameroonian regions, potentially introducing selection bias toward more accessible participants. Self-reported adherence of 83% considered as good risks social desirability bias, as pill counts and viral load data were not comprehensively verified, differing from studies like Rivas C., et al. (2024) [51] using cohorts. The cross-sectional design precludes causality, unlike longitudinal approaches in Hunziker & Blankenagel (2021) [47]. Qualitative data, while thematic, lacked verbatim quotes, reducing depth compared to Yiryuo et al. [10]. Political instability may have affected participation, and the focus on 0 - 9-year-olds excludes adolescent perspectives. Finally, no significant associations (p > 0.05) between adherence and factors like age or gender may stem from the small sample size, limiting statistical power. Despite these barriers, caregivers showed strong commitment, emphasizing balanced diet, encouragement, and privacy protection. No statistically significant associations were found between adherence and child age, caregiver gender, or transport problems (all p > 0.05), probably because of the small sample size.