STRENGTHS AND LIMITATIONS OF THIS STUDY

Using the phenomenological method, the study was able to acquire enough evidence and understanding of the lived experiences of informal caregivers.

The enthusiasm and willingness of the informal caregivers during the study was an advantage for the collection of in-depth data.

The researchers were unable to seek the views of children living with HIV/AIDS which could have enriched the data on challenges of living with HIV/AIDS with diverse views.

The study could not determine the HIV/AIDS status of the caregivers; this could have enriched the study further in understanding the experiences of caregivers who are infected with HIV/AIDS themselves as compared with those who are not.

Introduction

1.5 million children aged 0–14 years were infected with HIV worldwide. Furthermore, of the 1.5 million children sick, 130 000 were infected in 2022.1 About 2.58 million people aged 0–19 years are infected with HIV/AIDS globally in 2022, with children aged 0–9 years accounting for almost 50% of the newly infected cases.2 HIV/AIDS has killed 630 000 individuals worldwide in 2022, making it a public health hazard.1 According to the WHO, 90% of babies that contract the disease from infected mothers are found in Sub-Saharan Africa.1 According to a WHO assessment, more than 33 million individuals, including 4.4 million children are living with HIV/AIDS worldwide, with 90% of those infected living in developing countries such as Ghana, resulting in the deaths of 3.2 million children.2

Furthermore, 2.5 million and 1.9 million children under the age of 15 years are living with HIV/AIDS in the world and Sub-Saharan Africa, respectively.2 In Ghana, 25 000 children aged 0–14 years were reported to be HIV-positive, with 2900 newly infected and 2200 children dying from the disease in 2022.3 The prevalence of HIV/AIDS is 0.72% among people aged 15–49 years in Ghana’s Upper West Region.4 50% of HIV-infected children will not live up to 2 years and 80% will die before the age of 5 years due to a lack of access and poor adherence to antiretroviral therapy (ART).5

In Ghana, the problem of poor adherence among the few children taking ART drugs exists. In its drive to end the pandemic by 2020, the Joint United Nations Programme on HIV/AIDS (UNAIDS) stipulates that 90% of persons living with HIV/AIDS should be diagnosed, 90% of those diagnosed should be treated and 90% of those on treatment should have their viral load suppressed.6 However, the number of children receiving ART falls significantly short of the target. In 2022, for example, 44% of children living with HIV/AIDS were receiving antiretroviral medication to manage the virus and prevent illness transmission to others.3

Early access to antiretroviral medication and strong adherence are crucial in improving the health of persons living with HIV/AIDS and preventing the spread of the disease.7 Also, adherence to ART of 95% or above is essential for a favourable outcome.8 The scientists went on to say that poor adherence due to a lack of support can result in insufficient viral suppression, the establishment of resistant virus strains and treatment failure. This will increase morbidity and mortality. However, the few who are put on ART struggle with adherence. The adherence rate among infected toddlers residing in Ghana was 62%.9 Adherence to long-term therapy is defined by the WHO as the amount to which a person’s behaviour—taking medication, following a diet and/or implementing lifestyle modifications—aligns with agreed-upon recommendations from a healthcare practitioner.10

Family caregivers have critical roles in increasing children’s adherence to ART. Family caregivers are typically family members or close relatives who provide partial or full unpaid care to a dependent person who is unable to care for themselves, facilitating their well-being and assisting in various tasks and activities related to the person’s health such as medication adherence, wound treatment and equipment monitoring.11 According to studies, these informal carers bear more pressure due to the nature of children’s reliance on them to meet their basic needs, and they are frequently overloaded and under-resourced.12 13

Studies have been carried out in Ghana to explore the experiences of family caregivers on several topics; for example, studies exploring the knowledge of family caregivers’ ART for children, and the beliefs of family caregivers adhering to ART for children.14–16 No study was found by the researchers that directly explored how the problems that family caregivers face, as well as the presence of a support structure, affect adherence to ART among children living with HIV/AIDS in the Jirapa Municipality. The purpose of this study is to investigate the challenges and support systems experienced by family caregivers of children with HIV who seek HIV care for their children at St Joseph’s Hospital in Jirapa Municipality, Upper West Region of Ghana, and how these challenges and support systems influence adherence to ART among children living with HIV/AIDS.

MethodsResearch team and reflexivity

The research team is made up of nurses and lecturers in both, clinical and academic fields, in nursing and healthcare. They all have an interest in paediatric care and the management of HIV/AIDS. The lead author, LY, is a paediatric nurse specialist and has experience in qualitative studies. The author, WO, is a clinical nurse, a fellow of paediatric nursing and a lecturer who has in-depth knowledge of the conduct of qualitative research with a focus on HIV/AIDS and child health. The interviews were conducted by the lead author and SK. All the other authors have at least a first degree in nursing and underwent training before the commencement of their roles in this study. Though the lead author works in the facility, she has no business with the HIV/AIDS unit in the facility. The work of the authors has no bearing on the facility used for the studies and therefore did not know any of the participants either personally or professionally. Despite all these experiences and previous work, the researchers bracketed their emotions and personal experiences and ensured that it did not influence their interviewing or analysis.

Study design

An interpretative phenomenology design17 was adopted for this study. This design was used because we wanted to understand the lived experiences of caregivers about challenges and support that impact ART adherence among their children living with HIV/AIDS in the study setting. This allowed us to extract as much detail as possible from how people describe their experiences. The design is considered appropriate for the study because of insufficient data on the subject in the setting. Incountry cultural and societal differences result in context nuances that impact health. As such, the researchers wanted to explore how these caregivers make sense of their experiences.17 The researchers believe that exploring these experiences will bring to bear the challenges faced by these caregivers and the availability of support systems that influence adherence to ART among the children. Further, reporting in this manuscript follows the ‘standards for reporting qualitative research (SRQR)’ guidelines by O’Brien et al.18

Setting and participants

The Jirapa Municipality is in the north-western corner of the Upper West Region of Ghana. The total population of the Jirapa municipality is 88 402 distributed across all age groups and sexes; 53% of them are female and 47% male. It shares borders to the north with Lambussie-Karni District, to the east with Sissala East and West Districts, to the south with Nadowli District, and to the west with Lawra District.19

St Joseph’s Hospital which is located in the Jirapa Municipality is the setting for this study. It serves as the municipal hospital as well as a referral institution for eight health centres, 14 community-based health planning and services zones in the municipality, and additional facilities located outside the municipality. It has 206 beds and offers outpatient, diagnostic, HIV testing and counselling (HTC) and inpatient care. The total adult population (18 years and above) of people living with HIV is 458, with 70% female and 30% male. The study targets family caregivers of children living with HIV/AIDS and on ART who receive services at the HIV testing and counselling centre (HTC) at the St Joseph Hospital of Jirapa Municipality. The children population of HIV cases below the age of 18 years is 31, comprising 19 boys and 12 girls. The unit was managed by three registered general nurses, one orderly, one statistician and one medical doctor who visits there occasionally.20

Sampling and data collection

Thirteen family caregivers of children living with HIV/AIDS and receiving care at the HTC at St Joseph’s Hospital in Jirapa Municipality were interviewed during the study. This sample size of 13 was arrived at by data saturation where the participants did not produce any added information.17 21

The researchers chose study participants using a purposive sampling technique. The researchers translated the interview guide, information sheet and informed consent from English into Dagaare, which is the municipality’s local language. Family caregivers met the following inclusion criteria in the study: (1) Family caregivers who cared for children living with HIV/AIDS (2–14 years) continuously for at least 3 months and (2) Caregivers 18 years and above. Family caregivers, who (1) Have other health disorders, such as relating to mental, language, visual and hearing communication, that may affect the outcome of the study, and (2) Could neither speak English nor Dagaare, were excluded from the studies.

Participants who satisfied the inclusion criteria were first contacted physically and subsequently by phone to clarify the purpose of the study and to organise a meeting with the participants at a location convenient for both participants and the researcher. Participants were subsequently given information and consent sheets to sign or thumbprint when they agreed to take part in the study. The interview guide was developed with specific study objectives in mind. Based on the findings of the literature review, the interview guide’s content-specific questions were developed. Participants were informed that they could withdraw from the study at any moment without penalty. Study data were collected from April 2021 to May 2021. On the participants' days of visit to the HTC of St Joseph’s Hospital, interview sessions were organised in a private room within the hospital premises. During the face-to-face interview, the semistructured in-depth interview guide was used while observing the protocols guiding COVID-19 prevention.

The guide contains open-ended questions and probes to produce rich data (see online supplemental file 1). Participants’ own dialect, Dagaare, was used for the interview which allowed for open-ended questions to be asked, along with further probing of interesting issues, and it allowed the participants to share their experiences at ease with the researchers. Each interview lasted 20–30 min and was recorded using a digital recorder. Data collected for this study were stored in a password-protected file in a computer to prevent unauthorised access.

Methodological rigour

The quality of this study was achieved through actions that ensured credibility, dependability, transferability and confirmability.22 The study was credible in the sense that the researcher explained the goal of the study to the understanding of the participants, and they were free to ask questions for clarity. The researcher repeated some of the participants’ comments to ensure that they were accurate reflections of their experiences, and a variety of data gathering methods was used including interviews, observations and field notes. Ensuring dependability, interviews were continued and analysed until saturation where participants’ responses did not produce new responses. Confirmability of data was ensured by ensuring that coded data were categorised into subcategories and themes. The interview guide was piloted for validity and reliability. For transferability, the researchers gave details on the research design, setting and how purposive sampling was employed to choose participants who met the inclusion criteria.

Data analysis

The interview recordings were transcribed in Dagaare and translated into English by a person who has proficiency in both Dagaare and English. Data were analysed manually. The researchers employed interpretative phenomenology in this study using a reflexive thematic approach according to Braun and Clarke17 23–25 and guided by interpretative phenomenological approaches. The researchers did not start with predetermined categories or themes in mind. Instead, the themes were identified through an iterative process during data analysis. The researchers aimed to understand the meanings that individuals attach to their experiences.

The theoretical framework for the analysis of the data was the constructionist perspective which holds that people’s senses and experiences are socially constructed and changed but are not innate to them. Hence the researchers theorised the sociocultural and structural context that pushed the phenomenon under study. A theory-driven view was considered by the researchers where data were looked at with precise research questions in mind that steered the study. Researchers followed the six steps in data analysis by Braun and Clarke as described below:23–25

Data familiarisation and writing familiarisation notes: Two researchers carefully read through the transcript data to familiarise themselves. Each made an initial note which was discussed together, and each then put their notes into a visual map with some conceptual definitions.

Systematic data coding: The first author in consultation with coauthors started identifying initial ideas and generating initial codes across the entire data set through reading and repeated reading of the data, and collating data relevant to each code. The codes helped to organise the data.

Generating initial themes from coded and collated data: The researcher searched for themes and collated the codes into probable themes, gathered all data appropriate to each potential theme, and reviewed them examining if the themes worked by the coded extracts and the entire data set.

Developing and reviewing themes: Then, themes were continuously developed into meaningful patterns. Through literature review and comparing with the source data, researchers developed and reviewed the themes.

Refining, defining and naming themes: The authors discussed extensively the meaning of the patterns to refine the existing patterns.

Writing the report: The researchers during the final analysis produced the report. There was also an analysis and selection of vivid, convincing extract examples. The researchers related the analysis to the research question, producing a report on the analysis. Thematic maps were used to indicate the themes and subthemes.

Patient and public involvement

Neither patients nor the public were involved in the design, conduct, reporting, or dissemination of this research.

ResultsDemographic characteristics

Table 1 presents the summary of demographic data of 13 respondents who participated in the study. The table shows that most respondents were female (11), married (11), farmers (12) and did not have formal education (6). Most of them (12) were actual parents of the children. Most of the children living with HIV/AIDS were male (8). With duration of treatment for the children, they have been on ART for 4 months (0.33 years) to 14 years (mean 4.5 years, SD 4.4). Additionally, family caregivers were between the ages of 20 years and 50 years (mean 37.4 years, SD 9.0) and children living with HIV/AIDS were from 2 years to 14 years (mean 8.6 years, SD 5,3).

Table 1

Sociodemographic characteristics of respondents

Themes

For purposes of anonymity, family caregivers of children living with HIV/AIDS, who shared their experiences, admitted numerous challenges to ART adherence among the children. The analysis of transcript data generated six themes: (1) Financial challenges, (2) Human-related challenges, (3) Challenges at HTC centres, (4) Challenges with transportation, (5) Challenges in disclosing HIV status to children, and (6) Forms of support. These themes are further explained in the ensuing sections.

Financial challenges

Participants narrated their challenges in connection with finances. Some said they did not have money to take transport to collect their ART, meet the demands of their children at the HCT unit, such as buying food and other things for the children when hungry, buying Septrin which is part of the ART, and buying foodstuff to feed themselves and the children. They complained that one needs to eat well if on ART, but they did not have money to buy food. This is what they have to say.

Because I don't have money for car fare to come, the medicines can finish about three weeks or month before we come for the medicine…. R1

…maybe it’s time for you to come and collect your medicine and If you get a motor you have to buy fuel but sometimes you don't have the money… because of that the day will pass…. R10

…you know he will be hungry and supposed to eat and if you do not have money, it becomes a worry to you…. R4

…the only problem is the absence of Septrin here that we are asked to buy but if you don't have money, you can't, the Septrin is helpful if you can buy and take, your body becomes strong, but if they don't give you and you don't have money to buy you will take this one and your body will still be disorganized. It will be good if they make it available…. R12

…we have challenge in feeding because we don't have any proper job, it will help us to manage our disease, if you get the foodstuff and you don't even have the money you will also try to get herrings and 'Dawa Dawa' which will help you to be better because it will help the medicine to suppress the disease… R9.

Human-related challenges

Human-related challenges in ensuring that children living with HIV/AIDS adhere to ART were identified as an important challenge by family caregivers. Three subcategories generated under this main one as shown in figure 1 were child-related difficulties in adherence, caregiver-related difficulties in adherence and society-related difficulties in adherence. Child-related challenges were expressed by respondents as due to the bitterness and tablet nature of ART, a child not knowing the importance and its swallowing being monotonous. The following is what they had to say.

Figure 1

Thematic map on family caregivers’ challenges in ensuring children living with HIV/AIDS adhere to antiretroviral therapy (ART). HTC, HIV/AIDS treatment centre.

I give him the medicine, if you give him the tablet, he will not swallow… R1.

… because is bitter when you are giving it to the child, he doesn't want to drink you have to force him…. when you take medicine every day like that; it will get to a time when you will not want to take the medicine again…it is compulsory but because you know its importance but he is a child and doesn't know anything R4

Society-related stigma was spoken of as causing dissatisfaction regarding and against them. This does not give them the peace of mind to go to the HTC unit to manage children living with HIV/AIDS. Below are some expressions reported.

… if you have an issue with someone and the person knows that you are in this situation collecting the medication and sees you somewhere outside the hospital, he or she will be making a mockery of you…sometimes they call to ask where I am, I tell them I'm somewhere, I don't tell them I'm here and I don't like it R5.

Some family caregivers expressed their challenges for not being able to ensure children adhere strictly to ART due to forgetfulness, some due to fear of the unknown especially when they miss a dose, some also complained of a busy schedule, and finally, some said they are not always present at home to administer ART. The following were some of their statements.

Sometimes I forget but when it is too late we cannot take it again like if you forget and sleep or roam till 10 pm there are always fears about whether to take it or not…Missing doses of medicines happen when I'm not at home R3.

Sometimes I forget to give the medicine to the child because when I come from work, and I have to cook and sometimes before you realize she is sleeping but when I forget I try to give the following day…. R5

Challenges at the HTC centre

Family caregivers of this study experienced difficulties at the HTC centre which affected strict adherence negatively. They complained about delaying getting treatment at the centre and meeting familiar people not on ART who talk ill about them. The following were said by participants.

…at the hospital, you cannot get the medicines early like that… R3.

Because of that fear of people seeing me come here for the medicine, sometimes I feel like not coming but I think again that if I don't come it means that is the child that I want him/her to die so whatever it is I try to come R5.

Challenges with transportation

Family caregivers also complained that the non-availability of transportation from their places of residence to the HTC centre and having to trek a distance was taking a negative toll on ensuring strict adherence to the ART. Because of this, some family caregivers advocated that some of the ART be sent to clinics closer to their places of stay. This is what they said.

…there used to be public transport to Jirapa…but now it doesn't come again…I wish they were able to send some of the medicines to the clinic at our place so that our journey will be short R7.

…when I decided to come, I did not get means…vehicles that pass there to Jirapa no more pass but different route to Wa R10

If you don't get someone to pick you and the child to the hospital for the treatment, you have to back the child and walk a distance to the hospital R3.

Challenges in disclosing HIV status to the child

Participants feel that if children get to know their HIV status it will help them to adhere strictly to the ART. However, participants expressed their challenges in disclosing to the child his or her HIV status. The following were said:

…she asked me what medicine have we been collecting and the woman said we should not miss any dose, so I told her that there is a disease in our body that is why we have to take this medicine without missing doses, and that she supposed to take it all the time…the child upon hearing this became moody which also affected my mood and is paining me…. R7

…It is a worry how to disclose it to him because he is a child if you tell him, he has AIDS he will be thinking because he has also heard that AIDS is a bad disease and is a worry…when he gets to a certain age, we will tell him, and he will understand R12.

Support for family caregivers

Support for family caregivers is very necessary to ensure that children living with HIV/AIDS adhere strictly to ART. Family caregivers received support from both nuclear and extended families and HTC centres as indicated in figure 2. Support from their families was in the form of foodstuff, finances and support in ART administration. The following were their expressions.

Figure 2

Thematic map for forms of support for family caregivers in ensuring children living with HIV/AIDS adhere to antiretroviral therapy (ART). HTC, HIV testing and counselling.

When am not around is the father that gives the medicine to the child and if the father is not around, I break it into two and give it to the grandmother though I cannot tell her what medication it is, and tell her when the time is up, she should give to the child R2.

Is only my husband that supports me, when we are coming for the medicine, he gives us money in case the child wants food I can buy for him or if they talk about money I can pay R5.

The money we get from my brother-in-law helps a lot…for foodstuff, he farms for us to put down for the feeding, so the money he gives is for buying soup ingredients and grinding the flour R8.

Assistance received from the HTC centre by family caregivers was explained: receiving foodstuff from nurses, psychological support from colleagues and free ART from the HTC centre. These were explained as follows.

For help is, one nurse who ever helped me, she gave me rice, oil, and other things to prepare for the child R13.

We used to come here for a meeting every Saturday …you can come and hear something and when you get home all your worries will be thrown away. It was helpful… R11.

The support we get from the hospital is when we come, and our doctors and nurse can give us the medication well for us to take home and the government trying to always get the medicine for us for free R6.

Discussion

Following data analysis, family caregivers’ experiences in relation to their children’s adherence to ART were captured in six themes; financial challenges, human-related challenges, challenges at HTC centres, challenges with transportation, challenges in disclosing HIV status to the child and forms of support.

Family caregivers of children living with HIV/AIDS complained they did not have money to take transport to collect their ART, meet the demands of their children at the HCT unit such as buying food and other things for the child when hungry, buying Septrin which is part of the ART, and buying foodstuff to feed themselves and the children. They complained that one needs to eat well if on ART, but they did not have money to buy food. According to the family caregivers, these challenges negatively affect their efforts to ensure children under their care adhere to the ART. Similarly, studies conducted in Sub-Saharan Africa and even in other third world countries recognised financial stress as a daily difficulty faced while seeking ART services, such as transportation fees during follow-up visits and insufficient money for meals.13 These difficulties have a deleterious impact on adherence to ART. Out-of-pocket payments and the high cost of ART were noted in a review article showing the detrimental impact of adherence to ART.26 Inadequate money for transport, buying foodstuff and Septrin are factors that could lead to non-adherence to ART by family caregivers and children under their care.

Human-related challenges in ensuring that children living with HIV/AIDS adhere to ART were identified as an important challenge by family caregivers. Child-related challenges were expressed by respondents as due to the bitterness and tablet nature of ART, a child not knowing the importance, and its swallowing being monotonous. The findings of the current study are in consonance with a longitudinal observational cohort study where medication regimens such as tablet formulation have negatively influenced adherence to ART.27 The taste, formulation and child’s knowledge of ART’s importance influences adherence to ART. Respondents did not adhere to ART because of its tablet formulation and bitterness.28 Making available injectable or sweetened syrup ART and explaining its importance will take away some challenges to ensure strict adherence to ART among children living with HIV/AIDS.

Society-related stigma was spoken of as causing dissatisfaction regarding and against them. This does not give them the peace of mind to go to the HTC unit to manage the children living with HIV/AIDS. Stigma discourages people from seeking health services hence public education is needed on the cause, management and prognosis of HIV.29 Stigmatisation is one of the challenges caregivers face mostly ensuring strict adherence to ART by the children under their care.

Some family caregivers expressed their challenges for not being able to ensure children adhere strictly to ART due to forgetfulness, some due to fear of the unknown especially when they miss a dose, some also complained of a busy schedule, and finally, some said they are not always present at home to administer ART. A cross-sectional study revealed that People Living With HIV/AIDS (PLWHIV/AIDS) sometimes forget to take their ART thereby affecting adherence negatively.30 They further explained that their respondents forgot to take their ART because they were too busy and far from home. The aforementioned factors were recorded by Pokhrel et al as the main cause of non-adherence to ART.31 These challenges influenced ART adherence among children living with HIV/AIDS negatively; family caregivers need family support to ensure strict adherence to ART among children living with HIV/AIDS under their care.

Family caregivers experienced challenges at the HTC centre which affected strict adherence negatively. They complained of delaying getting treatment at the centre and meeting familiar people who talk ill about them. Too much waiting time affects adherence to ART negatively.26 Furthermore, the authors stated that care providers at the centre must reschedule their activities to shorten the waiting time for clients to ensure adherence to ART. The study further revealed that family caregivers see people who do not take HIV medications to be a source of stigma and for that matter do not wish to see them, especially at the HTC centre. If family caregivers continue to be seen by people who do not take ART at the HTC centre and are stigmatised, they are likely to be discouraged from seeking HIV care.29 Care providers at the centre are to be encouraged to limit unnecessary visits by people who are not HIV-positive and hence do not take ART from the unit.

Family caregivers also complained that the non-availability of transportation from their places of residence to the HTC centre and having to trek a distance was taking a negative toll on ensuring strict adherence to the ART. If a child is found to be living with HIV, the child and the caregiver will have to travel a distance to access care and treatment which already constitutes a barrier to service utilisation and retention in care.32 Far distances to HTC centres and lack of transport are seen by family caregivers as challenges to ensuring that children living with HIV/AIDS under their care adhere strictly to ART. Due to this, family caregivers of this study advocated that some of the ART be sent to clinics closer to their places of stay.

Participants feel that if children get to know their HIV status it will help them to adhere strictly to the ART. However, participants expressed their challenges in disclosing to the child his or her HIV status with the reason that the child will feel bad on hearing this news. Caregivers feel it is an issue because the children were too young to understand, while others think older children have heard that HIV/AIDS is a bad disease and telling them will make them feel bad. Likewise, studies conducted in Africa have shown that non-disclosure of children’s HIV status by caregivers has influenced ART adherence among children negatively.32–34 Hence family caregivers have complained of children’s refusal to take ART because, in a longitudinal observational cohort study, a child’s awareness of his/her HIV status is an influencing factor in adherence to ART.27 Children with information about their HIV status adhere to ART better than children without knowledge of their HIV status. The National AIDS/STI Control Programme and Ghana Health Service have recommended 8–10 years at which full disclosure of HIV/AIDS status should be made known to the child in a helpful and supportive approach and environment.35

Forms of support for family caregivers are very necessary to ensure that children living with HIV/AIDS adhere strictly to ART. Family caregivers received different forms of support from family members; they were provision of foodstuff, financial support and administering ART to the child. These forms of support were received from extended family members of family caregivers such as grandparents, mothers, in-laws and sisters. Supports were also received from nuclear family members or family caregivers such as daughters and partners. Most family caregivers had support from both extended and nuclear family members in administering ART to children under their care. Family caregivers of children living with HIV/AIDS received financial support from both extended and nuclear family members. This support assisted them in many ways to ensure strict adherence of the children to ART.

Support for family caregivers is very necessary to ensure that children living with HIV/AIDS adhere strictly to ART. They receive support from their families, both external and internal, in the form of foodstuff, finances and support in ART administration. Caregivers who had family support were more likely to adhere strictly to ART than those who had no family support. They further explained that though some infected persons do forget to take the ART, with family and friends’ support, they can adhere strictly.30 31 Likewise, UNAIDS postulates that care and support services should be complete to include medical, psychosocial, physical, socioeconomic, nutritional and legal support.36 They further said that these forms of support are crucial to the well-being and existence of people living with HIV/AIDS and their caregivers. Family support is therefore essential for family caregivers to ensure strict adherence to ART among children living with HIV/AIDS.

The study reveals that assistance received from the HTC centre by family caregivers included receiving foodstuff from nurses, psychological support from colleagues and free ART from the HTC centre. Support received by children living with HIV/AIDS and their caregivers at the HTC centre makes them feel supported hence they believe in a better future.37 Psychological support for people living with HIV/AIDS influences adherence positively.26 A longitudinal observational cohort study stated that social support as received by caregivers and their children at the HTC centre is a buffer against a stressful environment which enhances adherence to ART.27 It is therefore encouraged for people living with HIV/AIDS to get together often to know one another, share their problems and encourage one another. Care providers are supposed to empower them psychologically through the health education given at the centre. Availability and accessibility of antiretroviral medications at the HTC centres positively influence adherence to ART.26 Support received from the HTC centre such as counselling, foodstuff and medications facilitate adherence to ART among children living with HIV/AIDS.

Strengths and limitations of the study

This is the first research to explore the experiences of family caregivers of children living with HIV/AIDS in the chosen setting and has provided rich information on their lived challenges and support systems. The information provided by this study bridges the knowledge gap in this area and provides a resource for policy review, clinical practice and development of interventions that aims to reducing the challenges faced by family caregivers and enhancing ART adherence among children. However, the study is limited by some factors; most respondents were female, hence the findings could be skewed to that direction. The usage of one municipal hospital limits generalisability of the findings and interviewing more family caregivers from different settings may have produced a richer experience.

Conclusion, implication for practice, policy and recommendations

This study concludes that family caregivers faced financial challenges, human-related challenges, challenges at HTC centres, challenges with transportation, and challenges in disclosing HIV status to children, and they also experienced some forms of support. These challenges prevent family caregivers from ensuring that children under their care adhere strictly to ART. The support received by family caregivers contributed to enhancing ART adherence. Despite these challenges of family caregivers, there are no targeted interventions that address their plight. Healthcare providers should explain to the caregivers of children living with HIV/AIDS the policy regarding disclosure of the HIV/AIDS status of children. Health professionals working at the HTC centre should enhance their own capacity to help reduce time spent at the centre by family caregivers. Furthermore, they should limit access to the centre by people who have no business there. Family caregivers need support from government agencies and Non-governmental Organizations (NGOs) in terms of skills acquisition and capital to set up small-scale businesses that will give them work to reduce their financial challenges. Bringing ART services closer to family caregivers will solve the challenges related to distance and transportation. There should be a revision of existing policies that take into consideration the challenges of family caregivers of children living with HIV/AIDS.

Data availability statement

All data relevant to the study are included in the article or uploaded as supplementary information. The in-depth interview guide is uploaded as a supplementary file. However, audio-taped recordings of the interview cannot be shared with a third party because of the confidentially agreement signed by participants.

Ethics statementsPatient consent for publication

Not applicable.

Ethics approval

Ethical approval was obtained from the Institutional Review Board of the Navrongo Health Research Centre (NHRCIRB415). This study is part of a bigger study that was undertaken. At the site, the researchers were granted permission by the HTC centre. Participants who got emotional during the interviews were allowed to express emotional concerns and relax before the interview was continued. The interviews were conducted in safe and private environments. Additionally, participants were taken through the consent process effectively to communicate what the study entailed to allow participants to make their decision of taking part or not. They were assured of confidentiality. Researchers collected only relevant information from participants and data collected could not be linked to participants. Participants signed/thumbprinted the consent form after going through it and the information sheet. The letter 'R' representing participants with a number attached was assigned to family caregivers to ensure anonymity.

Acknowledgments

The authors thank all family caregivers and the children in their care for taking the time to participate in this study and share their experiences.