Original Research

Perceptions and experiences of HIV care retention during the first 12 months at Kanyamazane CHC

Sophy Shivambu, Sanele Ngcobo

Received: 29 May 2025; Accepted: 30 Aug. 2025; Published: 03 Dec. 2025

Copyright: © 2025. The Author(s). Licensee: AOSIS.
This work is licensed under the Creative Commons Attribution 4.0 International (CC BY 4.0) license (https://creativecommons.org/licenses/by/4.0/).

Abstract

Background: Despite South Africa’s progress in expanding access to antiretroviral therapy (ART), retaining people living with HIV (hereafter referred to as patients) in care remains a major challenge. Retention is essential for achieving viral suppression and preventing onward HIV transmission.

Objectives: This study aimed to explore the perceptions and experiences of patients and healthcare providers regarding factors influencing retention in care during the first 12 months of ART.

Method: A qualitative exploratory design was used at Kanyamazane Community Health Centre (CHC), a primary healthcare facility in Mpumalanga province, South Africa. Semi-structured interviews were conducted with 12 patients and four healthcare providers, purposively sampled to include those consistently retained and those re-engaged after loss to follow-up. Data were transcribed verbatim and analysed thematically using Braun and Clarke’s framework with ATLAS.ti. Trustworthiness was ensured through member-checking and triangulation.

Results: Six key themes were identified: (1) social and clinical support, (2) health education and empowerment, (3) motivation, (4) geographical and financial constraints, (5) stigma and disclosure challenges and (6) health system-related barriers. Facilitators of retention included family support, peer groups and differentiated service delivery models. Barriers included long waiting times, staff shortages and inadequate follow-up systems. Participants recommended structured appointment systems and personalised case management.

Conclusion: Retention in HIV care is influenced by an interplay of individual, social and health system factors. Holistic, person-centred interventions are needed to promote early and sustained engagement in care.

Contribution: This study demonstrates that early retention in HIV care is strengthened by family involvement, peer support, continuous counselling and home-based care, while barriers such as stigma, long clinic waiting times and poor tracing systems persist. It provides actionable strategies including structured booking systems and tailored case management to improve retention.

Keywords: antiretroviral therapy; adherence; people living with HIV; retention to care; perceptions; experiences; healthcare providers.

Introduction

HIV and AIDS remains a major public health problem,¹ with the highest burden of the disease in sub-Saharan Africa.² One of the success stories, however, is the scale-up of antiretroviral therapy (ART).^3,4 Coverage has increased from approximately 78% in 2021 to 83% in 2023 according to the United Nations AIDS (UNAIDS) report.⁵ Antiretroviral therapy has been massively scaled up to decrease related morbidity, mortality and transmission.⁶ Although South Africa has made substantial improvements in ART initiation, retention is a major challenge. Between 2018 and 2021, the rate of retention in care by 12 months was 61% in South Africa.⁴ Those inconsistently adherent to ART and are inadequately retained in HIV care have an increased risk of HIV transmission, poor quality of life and poor health outcomes.⁷

While there is no standard definition of retention in care, according to Mukumbang et al.⁸, retention in care is the ability to conform to the critical steps of HIV care, which includes regular attendance of follow-up appointments, laboratory test schedules and other health scheduled activities by healthcare providers.

As access and availability of ART increased, there are multiple challenges to retention in care.^9,10 Challenges to retention are classified as individual-, community- and institution-level challenges.¹¹ From an individual-level perspective, mental illness, lack of support structures, side effects, age, gender, violence, non-disclosure of HIV status, poverty, co-morbid diseases, herbal remedies, stigma and forgetfulness contribute to retention in care.^{11,12,13,14,15} Substance abuse and depression are also associated with lower retention in care in South Africa.¹⁶

The needs beyond medical care are not addressed by healthcare providers.¹⁷ Health systems factors such as access to health services, staff shortage, drug stock-out and waiting hours all contribute to lower retention in care.^8,12,15 The provision of good quality care by nurses, doctors, receptionists and counsellors is key to building interpersonal relationships.¹⁸ The quality of care includes respect, not being judgemental and not only providing medical care. Long waiting hours as a result of staff shortage push clients to disengage from ART,¹⁵ especially the working class. This study explored the perceptions and experiences of healthcare providers and patients at Kanyamazane Community Health Centre (CHC) about retention during the first 12 months of ART.

Methodology

Study design

This study employed a qualitative exploratory research design to explore the perceptions and experiences of healthcare providers and patients regarding retention in care during the first 12 months of treatment. Exploratory research is carried to investigate an undefined problem by exploring the research topic in varying depths rather than providing final and conclusive answers to research questions.¹⁹ Because of its nature of flexibility, it is also known as a grounded theory approach,²⁰ thus, not generalisable to the general population.

Study setting

The Kanyamazane CHC is a primary healthcare facility located in a semi-urban area within the Ehlanzeni District of Mpumalanga province, South Africa. The district falls under the City of Mbombela Local Municipality and serves a diverse population with a high HIV burden.²¹ According to the Human Sciences Research Council (HSRC), the overall HIV prevalence in Ehlanzeni District was approximately 16.0% across all age groups, while retention in HIV care was estimated at 81.8% in 2022.²² Over 30% of the population are unemployed²³ and most use public health services.²⁴

Sampling strategy

Purposive sampling was used to recruit participants with relevant experience and perspectives on retention in HIV care.²⁵ The goal was to match the sample to the aims and objectives of the study and to improve the trustworthiness of the results.^26,27 Four healthcare providers involved in HIV and ART service delivery, and actively engaged in the implementation of retention-to-care interventions, were included. In addition, 12 clients who had initiated ART at the CHC within the previous 12 months were interviewed. Of these, seven had consistently remained in care, while five were lost to follow-up (LTFU) during the study period but had subsequently been successfully re-engaged.

Inclusion and exclusion criteria

Inclusion criteria encompassed all genders, aged 18 years and older, who had initiated ART at Kanyamazane CHC, including those who had experienced LTFU within the past 12 months and were re-engaged into care. Eligible healthcare providers were actively involved in managing patients and implementing retention interventions.

Exclusion criteria included individuals who had initiated ART on the day of the interview, those on ART initiated elsewhere and transferred in and those below 18 years.

Participant recruitment

Healthcare providers were identified through collaboration with the facility manager to ensure inclusion across different staff cadres. Patients were referred by healthcare providers during routine consultations. Referrals were conducted in a private consultation room to uphold confidentiality. This environment enabled S.S. to provide detailed information about the study, address any participant concerns and obtain informed consent while maintaining privacy and dignity.

Data collection procedures

To enhance the quality of data collection and participants’ understanding, three actual interviews – two for patients and one for healthcare providers – were conducted to pre-test the interview guides. After the interviews, all questions were found relevant for gathering the required information and understandable to participants. At the commencement of interviews, eligible participants were screened by S.S. following referral. After obtaining informed consent, one-on-one interviews were conducted using semi-structured interview guides (see Appendix 1 and Appendix 2). As indicated by previous researchers, a well-designed semi-structured interview guide offers the flexibility to explore emerging themes based on the research questions.²⁸ The design of interview questions was guided by a literature review on ART adherence by patients.²⁹ With a total of 16 interviews, data saturation was reached. This is a point in data collection where no additional or new information is identified.³⁰ Data begin to repeat itself, making further collection redundant. Interviews were audio-recorded and held privately to ensure confidentiality and comfort. All participants provided written consent prior to participation and recording.

Data analysis

Transcription was carried out verbatim from audio-recorded in-depth interviews to ensure that the participants’ responses were accurately captured in their own words, preserving the nuances and contextual meanings essential for qualitative analysis. Each recording was transcribed by S.S., who was familiar with the study objectives and subsequently reviewed by S.N. for accuracy and completeness. This approach aligns with best practices in qualitative research, which emphasise the importance of faithful transcription to maintain the integrity of the data.³¹ As a method of developing and interpreting patterns of meaning across qualitative data,³² thematic analysis was used to identify, analyse, organise, describe and report themes found within a dataset.³³

The thematic analysis followed the six-phase approach outlined by Braun and Clarke. Phase 1 involved becoming familiar with the data: a process that began during data collection and continued through the transcription of interviews. S.S. read through all transcripts multiple times to gain a comprehensive understanding of the dataset. As this process unfolded, emerging ideas, patterns and meanings gradually took shape. Phases 2 and 3 focused on generating initial codes and building a coding framework. Once a broad understanding of the data was established, a project was created using ATLAS.ti (Scientific Software Development GmbH, Berlin, Germany), where all transcripts were uploaded. The software automatically assigned numbers to each document based on the upload order. S.S. then conducted initial coding by identifying codes, categories and patterns across the transcripts. This step aimed to label significant words and phrases used by participants. In Phase 4, the search for themes began by exploring the codes specifically related to issues surrounding retention or non-retention in HIV care. Phase 5 involved reviewing and refining these codes, grouping recurring patterns into meaningful categories that contributed to the formation of overarching themes. Finally, in Phase 6, the themes were clearly defined and named, with key insights identified and briefly described to capture the essence of each theme.³⁴

Trustworthiness

To enhance the rigour and trustworthiness of the findings, member-checking and triangulation techniques were applied. Often regarded as the gold standard of qualitative research, member-checking was used to obtain feedback from the participants about one’s interpretations.³⁵ During data collection, S.S. used paraphrasing, summarising and confirming the accuracy of data interpretation with the participants throughout the interview. Triangulation offered an opportunity to study one phenomenon from multiple sources of data, thereby minimising personal biases and enhancing the credibility of the research study.³⁶ Participants’ responses were checked for similarities or differences before assigning codes for thematic analysis.

Ethical considerations

Ethical clearance was obtained from the Faculty of Health Sciences Research Ethics Committee at the University of Pretoria (Reference No: 651/2024) and from the Mpumalanga Department of Health via the National Health Research Database (NHRD) (Reference No: MP_202410_014). All participants provided written informed consent for participation and audio recording. To protect confidentiality, healthcare providers were identified using the prefix ‘H’ and patients with the prefix ‘P’ in all transcripts and reporting.

Results

A total of four healthcare providers and 12 patients participated in the study (Table 1). All healthcare providers were female, with a mean age of 44 years (range: 33–60 years), and had between 5 and 21 years of professional experience (mean: 11 years). Their professional roles included two professional nurses, one pharmacy assistant and one HIV lay counsellor. Three held diplomas, while one had completed matric. Among the patient participants, there was an equal gender distribution (6 male and 6 female). Their mean age was 40 years, ranging from 23 to 54 years. Time on ART ranged from 3 to 12 months, with an average duration of 9 months. Half of the patients were employed, while the remainder were either self-employed (25%) or unemployed (25%). All had completed secondary education. Five participants (42%) had a history of LTFU but had been successfully re-engaged into care.

The following section presents findings from in-depth interviews conducted. The analysis yielded six overarching themes that reflect the complex interplay of individual, interpersonal and structural factors influencing retention to HIV care during the first 12 months of treatment (Table 2). These themes are: (1) importance of social and clinical support, (2) health education and patient empowerment, (3) patient motivation, (4) geographical access and financial barriers, (5) stigma and disclosure challenges and (5) health system-related challenges.

Social and clinical support

Participants in this study frequently highlighted the importance of both social and clinical support in helping them stay engaged with HIV treatment. Family, support groups and home-based carers all played roles in providing encouragement, reminders and emotional strength. These support systems often made the difference between defaulting and remaining on treatment.

Family as a source of strength and reminder

Some participants shared that their family was actively involved in their care, especially by reminding them to take their medication:

‘I am happy because even at home, I did not hide my status. My children know that I am taking ARVs [antiretrovirals] so they can remind me if I forget to take my pills … We agreed at home with my husband to use condoms, as he is also taking ARVs, to make our life healthy.’ (P6, female, 54 years old)

Support within the home, particularly when disclosure was possible, created an environment of shared responsibility and mutual care.

Peer-to-peer support groups

A few participants described how support groups helped them feel less isolated and more hopeful:

‘There was a certain support group where we were told everything to make us not to feel like we are the only ones affected by HIV.’ (P1, male, 40 years old)

‘When I start treatment, there were support groups where they encouraged people to adhere to their treatment.’ (P11, male, 51 years old)

This form of peer support helped to normalise the experience of living with HIV and offered an emotional lifeline for those struggling with stigma or acceptance.

Home-based carers as a link to care

Home-based care teams were also important sources of motivation and helped patients return to care after defaulting:

‘I had a neighbour [granny] who was not well, and one day I heard a home-based sister counselling her … I saw granny’s health improving. So I returned to the clinic.’ (P10, female, 34 years old)

‘They were also home-based care team who used to visit us and encouraged people to adhere to treatment.’ (P11, male, 51 years old)

‘We have seen people coming back due to the work done by our WBOT team and health promoter.’ (H1, female, HIV lay counsellor)

These visits provided both health education and encouragement, especially for patients who had disengaged from care.

Health education and patient empowerment

Participants in this study described how health education and counselling empowered them to understand their diagnosis, adhere to treatment and take responsibility for their health. For many, this knowledge transformed fear into action and confusion into clarity.

Counselling at initiation builds understanding

The initial counselling experience helped patients accept their status and begin ART with purpose:

‘When I started on ART, they trained me for 3 days on the importance of treatment adherence.’ (P6, female, 54 years old)

‘They spoke to me about the importance of treatment adherence and the consequences of non-adherence.’ (P8, female, 38 years old)

These early education sessions helped calm fears, correct misconceptions and prepare participants for the reality of lifelong treatment.

Encouragement from healthcare providers

Clinical staff were often praised for their role in motivating patients, especially during times of fear or doubt:

‘We then encourage them to adhere on treatment since they are now on chronic like those who are diabetic.’ (H1, female, HIV lay counsellor)

‘The counselling from the sister encouraged me to accept my status … I was traumatised as I also thought I am going to die.’ (P8, female, 38 years old)

The way healthcare workers spoke to patients had a direct impact on their willingness to stay in care. Encouraging and non-judgemental communication was especially powerful.

Empowerment through continuous engagement

For others, repeated messages about adherence and the benefits of staying on treatment reinforced their commitment:

‘They talk to you in such a way that you will understand. Especially to us [male patients] because we are scared to come to the clinic.’ (P5, male, 46 years old)

‘As I come to collect treatment, they ask how I feel and I tell them how I feel.’ (P6, female, 54 years old)

‘Our counselling start when the person test for HIV. When the person test positive, our counselling becomes continuous when the patient is on treatment.’ (H4, female, professional nurse)

Health education translates into personal responsibility

Some participants internalised the messages and took full ownership of their health:

‘Yes, it is helpful because I am able to take care of my life. I come to the clinic on my given date and take my pill at the same time every day.’ (P3, female, 33 years old)

‘I don’t take it as a treatment. I count it as if I am taking my daily food.’ (P6, female, 54 years old)

‘I stay on treatment because this is my life. If I stop taking the treatment, I will be ill as the disease will start again.’ (P12, male, 36 years old)

These quotes show how patient empowerment is not only about clinical facts – it is also about feeling seen, respected and supported in a human way.

Gaps and missed opportunities

However, others felt the information was not always enough or not delivered in a way that helped them cope with their realities:

‘It helps to those who listen when they talk to them. We are different as people. Other people hold to what they were told but others doesn’t as we also see them not honouring their appointment dates.’ (P8, female, 38 years old)

‘According to my opinion, it is not helpful … Sometimes they don’t emphasise on the impacts of defaulting treatment.’ (P9, male, 45 years old)

This highlights the importance of not only delivering health information but also doing so in a way that is tailored to patients’ understanding, emotional readiness and social context.

Patient motivation

While many patients at Kanyamazane CHC faced stigma, long queues and financial stress, a strong theme emerged around self-motivation and personal responsibility. Several participants spoke about why they continued to take ART without being reminded or followed up. For them, staying alive, protecting their children or accepting their status became powerful reasons to adhere. Their stories reflect resilience, self-awareness and hope important elements of patient agency.

Staying alive for family

For many participants, the desire to stay alive for their children and loved ones was a key motivator:

‘Eish, I am thinking about my kids. If I don’t adhere to my treatment and die, who will raise them? I try because I want to live for them, my wife and my family.’ (P1, male, 40 years old)

‘I am a mother of two. I have no parents. I don’t see any reason for me to stop taking treatment because I have children to raise. I want to see them growing.’ (P7, female, 34 years old)

These expressions of hope and responsibility reveal how deeply family relationships motivate patients to stay healthy.

Personal responsibility and daily discipline

Several participants described their treatment as a personal responsibility – something they do for themselves, without being pushed:

‘Is up to a person. The clinic is there to help you with the treatment. It up to you to take treatment accordingly.’ (P4, male, 42 years old)

‘I don’t take it as a treatment. I count it as if I am taking my daily food.’ (P6, female, 54 years old)

This level of acceptance and internal motivation shows how some patients become active agents in their own health – rather than passive recipients of care.

Acceptance of HIV status

Coming to terms with an HIV diagnosis played a major role in empowering patients to take control of their health journey:

‘I think they helped me a lot to understand what is going on, until I accepted to move forward.’ (P1, male, 40 years old)

‘It has helped me to accept my status and adhere to my treatment.’ (P2, female, 23 years old)

Once acceptance was achieved, participants found it easier to adhere to treatment.

Learning from others’ mistakes

Some participants were motivated by what they saw happen to others who had stopped taking treatment:

‘They will tell you about the people who have died because of non-adherence. You end up telling yourself that I don’t want to die and leave my two children behind.’ (P10, female, 34 years old)

This external observation became an internal motivator – shaping future behaviour based on past lessons.

Geographical access and financial constraints

Geographical access and transport-related challenges significantly impact retention to HIV care. For patients at Kanyamazane CHC, difficulties include costs associated with traveling when relocating for work and meeting basic needs such as food. These challenges were not always about the physical distance to the clinic – but about the broader constraints of time, money and daily survival.

Relocation without transfer and work commitments

Participants who moved or worked far from the clinic struggled to maintain care because of delays in obtaining transfer letters or a lack of familiarity with new facilities:

‘I was working in Jozi. So I thought I would get time to come and request a transfer letter but I didn’t … I should have just reported to any clinic in Jo’burg and asked for help.’ (P5, male, 46 years old)

In some cases, patients remained unlinked to care for extended periods because of work commitments, prioritising time for work rather than at the clinic:

‘Also with the fact that I am working with people at work, I have to be always at work.’ (P7, female, 34 years old)

‘I have to attend trainings at work. So, I end up missing my appointment dates.’ (P10, female, 34 years old)

Poverty and securing income

For unemployed patients, treatment adherence often competed with basic needs such as food:

‘Hence, I always tell my family to help me with food since I am unemployed, so I will be able to continue with my treatment.’ (P5, male, 46 years old)

‘I was struggling with hunger sometimes … I realised that the pills will hurt me since I was not working, and they had told me that I should never take them on an empty stomach.’ (P8, female, 38 years old)

For working patients, attending appointments often meant losing a day’s wages or having to explain absences to employers:

‘For me to attend clinic I have to report at work, I have to produce a doctor’s note to show that I was at the clinic.’ (P7, female, 34 years old)

These quotes reflected the social and financial constraints that affected clinic attendance and treatment adherence among patients.

Solutions through decentralisation and community support

Decentralised models such as Central Chronic Medicine Dispensing and Distribution (CCMDD) were highlighted as helpful, especially for working participants:

‘I accepted [CCMDD] because I think it will be easy for me to collect my treatment at Clicks because I am working.’ (P7, female, 34 years old)

‘Others choose their pick-up points next to their working environments.’ (H3, female, professional nurse)

Community-based follow-up was also seen as effective for reaching those who missed appointments:

‘They will come to your house to make sure what is happening about you.’ (P7, female, 34 years old)

Stigma and disclosure challenges

For many patients, stigma and difficulties around disclosure continue to affect how they engage with care. Participants in this study described how fear of being judged, hiding their treatment and rejection by family members made it hard to stay on ART. Some even defaulted from care because of these pressures. Their voices offer a deeper understanding of how social and emotional experiences shape retention to treatment.

Fear of being seen or judged

Fear of being seen at the clinic and being identified as someone living with HIV led some patients to stop attending altogether:

‘People have fear of other people, like asking themselves who am I going to meet at the clinic? Just because they don’t want the local people to see them that they are taking treatment, they end up stop taking their treatment.’ (P7, female, 34 years old)

Others feared how they would be treated if their status became public:

‘They are afraid of people on what they will say. How they will talk about their status.’ (P1, male, 40 years old)

Taking treatment secretly

Disclosure within the home was not always possible. Some participants had to hide their medication, which made adherence difficult:

‘Other people take the treatment in secret. No one knows at home … when there are people or visitors at home, this person will not be able to take the pill even the rest of the week.’ (P11, male, 51 years old)

‘But we have patients who are not collecting their treatment because they were away and no one came to collect for them. They haven’t told anyone about their treatment.’ (H2, female, pharmacy assistant)

A lack of support and self-stigma

Stigma also appeared in the form of rejection at home or internalised guilt and shame:

‘Others give up on treatment because they lack support at home. They are being excluded from family matters because of their HIV status.’ (P6, female, 54 years old)

‘I was having a problem because I never thought I will be infected by this virus.’ (P9, male, 45 years old)

Solutions through support groups

At the start of the study, there were no longer any support groups. Patients proposed their reestablishment, especially the male patients, which highlighted gender-specific preference in HIV care:

‘It is better if we can have support groups back.’ (P1, male, 40 years old)

‘If they can have another groups of people who will check the patient files and track how the patients are doing in terms of viral load suppression and check how these people are doing.’ (P11, male, 51 years old)

Health system-related challenges

While many participants in this study appreciated the services offered at Kanyamazane CHC, they also described several challenges within the health system affecting their ability to stay in care. These included staff shortages, long waiting times, inconsistent follow-up systems and negative staff attitudes. These barriers created frustration, fear and, at times, caused people to delay or stop treatment.

Long waiting times

A recurring issue was the long time spent at the clinic – especially difficult for those who work or are unwell:

‘In most cases you can arrive at the clinic at 7am and stay until 3pm to get attended.’ (P7, female, 34 years old)

‘The challenge will happen when we spend time waiting for assistance in the clinic.’ (P12, male, 36 years old)

Long waiting times also discouraged some from returning or caused them to miss appointments.

Staff shortages

Some participants described how limited staff made it hard for the clinic to function efficiently, affecting the quality of care:

‘The clinic has a shortage of staff which makes it difficult for the one working to do their tasks well.’ (P9, male, 45 years old)

This affected follow-ups, patient communication and the ability to provide individualised care. While some patients felt neglected:

‘A sister can go to lunch without anyone staying behind to assist us.’ (P7, female, 34 years old)

Healthcare providers felt the pressure:

‘We have shortage of staff … Sometimes the clinic is full and the patients need to be attended on time.’ (H4, female, professional nurse)

Negative communication

While many appreciated the support from clinic staff, several participants shared experiences of being spoken to in ways that felt judgemental or discouraging – especially after missing appointments:

‘They will mock you … those words they tell you – “you will die,” “you are killing yourself,” “you will leave your family …”’ (P5, male, 46 years old)

‘People are hurt by their words … If you come to the clinic and someone talks to you like that, do you think that person will come back? No, he won’t.’ (P7, female, 34 years old)

‘When I go to the clinic they will mock me, telling me that I will die because I have defaulted my treatment. I then told myself that it’s better for me to stay at home.’ (P10, female, 34 years old)

These negative encounters made some fear returning to care after defaulting, worsening the risk of long-term disengagement.

Inconsistent tracing and follow-up

Clinic tracing efforts (phone calls and home visits) were sometimes inconsistent, often because of workload or incorrect patient contact details:

‘We do telephone reminders though I cannot lie and say it is happening all the time.’ (H4, female, professional nurse)

‘The challenge is that they [patients] give us wrong addresses and wrong telephone numbers.’ (H4, female, professional nurse)

Solutions through patient booking system and case management

By scheduling appointments, healthcare providers thought they will reduce patient waiting time. The aim is to support consistent follow-up that include reminders and better tracking of missed appointment, allowing effective telephone tracing:

‘Maybe the strategy will be to find ways of following them through reminder calls.’ (H4, female, professional nurse)

‘From my opinion, the booking system will be good if we do it correctly.’ (H2, female, pharmacy assistant)

Discussion

This study highlights how individual motivation, social support, health education and health system factors intersect to shape early retention in HIV care, drawing on the lived experiences of people with HIV and healthcare providers at a South African primary healthcare facility. While participants generally recognised the importance of lifelong ART, their narratives revealed that retention was shaped not only by clinical understanding but also by household dynamics, socioeconomic pressures and everyday encounters within the health system. Support from family, home-based care and peer interactions emerged as key enablers of continuity, while logistical challenges, stigma and health system inefficiencies posed ongoing barriers reinforcing the need for integrated, person-centred interventions tailored to the realities of patients in resource-limited settings.

Family support, peer interactions and home-based care emerged as critical structural enablers of retention in care among patients. Family members and sexual partners provided emotional support and practical guidance, helping individuals navigate barriers to consistent engagement with HIV services. Partner support was crucial for ART adherence in rural Malawi, while in rural Mpumalanga, partners also promoted safer sexual practices to support retention in care.^37,38 These findings align with this study, where partners of patients encouraged condom use to promote a healthy lifestyle and support treatment adherence. While support groups were identified as retention interventions, evidence from Zimbabwe shows that HIV support groups extend beyond psychosocial support to actively enhance treatment adherence.³⁹ Home-based care gave positive outcomes in Uganda. Similarly, in our study, culturally sensitive extension of clinical services delivered by community healthcare workers provided follow-up, emotional and physical support within patients’ home environments, thereby bridging gaps between primary healthcare facilities and communities.^40,41

Counselling, encouragement and continuous engagement fostered patient empowerment and personal responsibility for ART. Consistent, non-judgemental counselling improved understanding of HIV and adherence, as supported by a Gauteng study where 97.6% of participants reported improved engagement following pre- and post-ART counselling.⁶ Similarly, in Kenya, limited knowledge was linked to poor retention,⁴² reinforcing the importance of health education in enabling informed decision-making.⁴³ However, some participants still perceived gaps in counselling depth, highlighting the need to strengthen and tailor educational interventions.

Most patients highlighted that personal motivation, alongside clinical support, was key to sustained engagement, driven by a desire to stay healthy, care for their families, accept their status and learn from others’ experiences. Similar studies identified fear of disease progression, understanding treatment benefits and witnessing others’ outcomes as key motivators.^6,8,29,43 Self-acceptance, as shown in other research, made adherence easier without external prompting.⁴⁴

Relocation without transfer letters, work demands, poverty and fear of income loss were key barriers to retention in care. Similar challenges were reported in Limpopo, where long travel distances and demanding jobs hindered treatment access,⁴⁵ and in Nigeria, where men often prioritised work over health.^1,46 Poverty and unemployment, also linked to poor adherence, made it difficult for patients at Kanyamazane CHC to attend appointments, increasing the risk of treatment interruption.^29,47 However, decentralised service delivery models have helped mitigate these barriers and improve retention.

Some participants reported that fear of discrimination, challenges with disclosure and a lack of family support hindered their health-seeking behaviour, findings echoed in a study from Zambia.⁸ While HIV stigma encompasses negative attitudes and beliefs about patients, the behaviours that result from those attitudes and beliefs affect the emotional and mental well-being of people living with HIV. They internalise what they experienced as stigma either at the community or health facilities and begin to develop a negative self-image. The fear of being discriminated or judged because of their HIV status pushed patients away from remaining in treatment, especially during the first year of ART. Male participants, in particular, recommended HIV support groups to address these barriers. The 2022 Coach Mpilo pilot project demonstrated that peer-led groups effectively supported men to remain in care and facilitated re-engagement for those who had defaulted.⁴⁸ HIV education, not only for patients, is crucial for addressing the misconceptions about HIV and fostering stronger support systems for those living with the condition.

Long waiting times and staff shortages at Kanyamazane CHC made clinic visits difficult, particularly those balancing work and family demands. Negative communication and inconsistent patient follow-up further contributed to poor retention. In Mozambique, time spent at health facilities was a key factor in patient satisfaction, while in Asia, effective communication with healthcare providers improved adherence.^45,49 Rushed consultations because of limited staff reduced the quality of care and patient education. Unfriendly or judgemental attitudes discouraged follow-up visits and increased the risk of treatment abandonment.^46,47

Delayed and inconsistent telephone tracing at Kanyamazane CHC was largely because of staff shortages, with patients often contacted only after defaulting, and many unreachable because of incorrect contact details. This aligns with findings from Zambia, where telephone tracing was ineffective in re-engaging LTFU patients.⁵⁰ To address these gaps, healthcare providers recommended implementing case management strategies such as reminder calls and a structured patient booking system. These patient-centred approaches have been shown to improve adherence, enhance retention in care and reduce waiting times by streamlining patient flow and easing staff workload.^8,47,49

Limitations

This study was limited to a single healthcare facility, which may affect the transferability of findings to other settings. All healthcare providers were female, a limitation in exploring male healthcare providers’ perspectives. The average mean age for patients was 40 years, a further limitation in exploring adolescents and elderly perspectives on retention to care. The perceived retention interventions and reported experiences reflect the views of clinic attendees and healthcare providers specific to the study site and may not be representative of broader populations.

Conclusion

Retention to care in the first year of ART at Kanyamazane CHC is shaped by deeply interconnected social, structural and individual factors. Strengthening peer support structures, addressing stigma both within clinics and in the community, expanding home-based care and improving health system functionality including patient flow and provider communication could significantly enhance retention. These findings reinforce the need for integrated, context-sensitive strategies that bridge clinical services and community-based support.

Acknowledgements

The authors would like to thank all the healthcare providers and patients who participated in this research, the Department of Health in Mpumalanga and the Ehlanzeni district for allowing us to conduct this research in their facility.

The authors declare that they have no financial or personal relationships that may have inappropriately influenced them in writing this article.

S.S. participated in the conception, design, data collection, data transcription, data analysis and drafting the initial manuscript. S.N. supervised and critically reviewed the manuscript.

This research received no specific grant from any funding agency in the public, commercial or not-for-profit sectors.

Data sharing is not applicable to this article as no new data were created or analysed in this study.

The views and opinions expressed in this article are those of the authors and are the product of professional research. It does not necessarily reflect the official policy or position of any affiliated institution, funder, agency or publisher. The authors are responsible for this article’s results, findings and content.

References

Appendices

Appendix 1: Interview guide (healthcare provider).

Title of research

Perceptions and Experiences of Healthcare Providers and People Living with HIV on Retention to Care During the First 12 months of Treatment at Kanyamazane Community Health Centre.

Participant ID: 24/H00

Date of data collection: _____________

Respondent cadre _____________

Part 1. Screening and eligibility

Part 2. Demographic profile of the participant (to be asked by the researcher)

1. What is your gender?

   • Female

   • Male

   • Other

1. How old are you?………….

2. How long have you been working in this clinic?

   • Years…………

   • Months……….

3. What is your highest completed level of education

   • Matric/post-matric certificate

   • Diploma/Degree

   • Masters/PhD

Part 3. Interview questions

1. What interventions does this clinic use to support patients to keep on their treatment in the first year after starting ART?

2. When do you offer these interventions to patients after they have started on treatment?

   

3. Do you experience challenges or opportunities when offering such interventions to patients? Yes/No?

4. What challenges or opportunities do you experience when trying to offer one or more interventions?

   

5. What are your personal experiences regarding patients’ retention in care in the first year after starting ART at this clinic?

6. What do you think could be done to improve retention of patients in the first year of starting treatment at this clinic?

7. Why do you think your suggestions will work?

Appendix 2: Interview guide (patients)

Title of research

Perceptions and Experiences of people living with HIV and healthcare providers on retention to care strategies and interventions at Kanyamazane CHC in the first 12 months of ART initiation.

Participant ID: 24/P00

Name of facility/district/province: _____________

Date of data collection: _____________

Part 1. Screening and eligibility

Part 2. Demographic profile of the participant (to be asked by the researcher)

1. What is your gender?

   • Female

   • Male

   • Other

2. What is your employment status?

   • Employed

   • Not Employed

   • Self-employed

3. What is your highest level of education that you completed?

   • No schooling

   • Primary school

   • Secondary school

   • Tertiary qualification, for example, College

Part 3. Interview questions1

1. What are the health services available to support you to remain in your treatment in this clinic?

   • Have you ever been offered one or more of these services? Yes/No.
   • If the answer is yes, did you accept the offer? Yes/No
   • If you accepted the offer, please tell me more……..

2. Do you think is helpful to have such services offered to you? Yes/No. Kindly explain your answer.

   • What challenges are you experiencing from these health services?
   • What opportunities are you experiencing from these health services?

3. Have you previously stopped collecting your treatment in this clinic? Yes/No. If yes, for how long?

4. Why are you so good at staying on your HIV treatment? (not applicable to LTFU)

5. Why do you think other people give up on their treatment in the first year?

6. What do you think the clinic can do to help you stay on your treatment in the future?

Part 4. Patients with a history of being lost to follow-up

1. Tell me more why you stopped collecting your treatment at this clinic?

2. What motivated or encouraged you to return to your treatment?

3. How was your experience with the clinic staff when you return back?

4. What do you think the clinic could have done or can do differently to help you stay on your treatment?