The human immunodeficiency virus (HIV) epidemic continues to pose a major health challenge, with hospital admission rates for people living with HIV (PLWHIV) remaining high despite treatment advances and recommendations promoting HIV self-management. Hospital-based nurses are the primary healthcare professionals interacting with PLWHIV in hospital settings, making it critical to understand their experiences in providing HIV self-management information at discharge to improve outcomes and reduce readmissions. This study’s purpose was to explore hospital-based nurses’ understanding of HIV self-management and to explore and describe their experiences in providing HIV self-management-related discharge information at a tertiary hospital in the Cape Metropole.
A qualitative, descriptive, exploratory and contextual design was employed. Ten hospital-based nurses were purposively sampled, and data were collected through semi-structured interviews. Braun and Clarke’s six steps of thematic analysis were applied, with ethical principles observed and trustworthiness ensured.
The study revealed that hospital-based nurses recognised the importance of understanding HIV progression, patient involvement in HIV self-management and their role in education at discharge. Participants emphasised the necessity of ongoing training to strengthen healthcare professionals’ ability to support PLWHIV effectively.
Providing HIV self-management information at discharge can reduce hospital admissions. However, gaps in hospital-based nurses’ knowledge highlight the need for continuous training to enhance patient education and improve self-management.
This study identifies critical gaps in hospital-based nurses’ knowledge and practice, offering insights into measures required to equip hospital-based nurses to educate PLWHIV. Strengthening this role has the potential to improve patient wellbeing, reduce morbidity and hospital admissions.
Globally, in 2024, about 39.9 million people were living with human immunodeficiency virus (HIV), with South Africa reporting the highest number of people living with HIV (PLWHIV), recorded at 8 million (Louw,
Although the Western Cape province reported a lower HIV prevalence rate of 7.4% in 2022 (Oosthuizen,
Research shows that up to 74.4% of patients admitted to hospitals who qualify for readmission have HIV-related health conditions (Chawla et al.,
The various HIV self-management techniques, such as lifestyle and behaviour change, regular check-ups, family support, treatment adherence and symptom monitoring, are essential for reduction of hospital admissions, better understanding of the condition, increased adherence and improved prognoses (Areri et al.,
As HIV became a chronic illness, HIV self-management has gained prominence, with high potential to improve health outcomes and reduce hospital admissions (Battersby et al.,
This study applied a qualitative approach, with an exploratory, descriptive and contextual research design (Arison,
The study was conducted at a leading public academic hospital within the Cape Metropole area of the Western Cape province in South Africa (Arison,
The target population for this study was hospital-based registered nurses in different categories (Arison,
Guided by the research aim and research question, the interview guide was developed from the literature by the researchers. The interview questions started with the question: ‘
The data analysis process involved transcribing the interviews verbatim, and interviews conducted in Afrikaans were translated by a professional translator and verified by the first author, whose first language is Afrikaans (Arison,
To ensure trustworthiness, this study followed the criteria provided by Guba and Lincoln (
Ethical approvals were obtained from Stellenbosch University’s Health Research Ethics Committee (HREC Reference No: S23/04/092) and from the Western Cape Department of Health and Wellness (WC_202309_009) (Arison,
Ten hospital-based nurses from the tertiary hospital voluntarily participated in the study. All participants were female, with an average age of 44 years, ranging from 27 to 59 years (Arison,
Demographic details of the participants.
| Participant | Age (years) | Professional status | Years of experience in nursing |
|---|---|---|---|
| P1 | 30 | Hospital-based-Professional nurse (PN) | 12 |
| P2 | 27 | Hospital-based-Professional nurse | 3 |
| P3 | 34 | Hospital-based-Professional nurse |
13 |
| P4 | 51 | Hospital-based-Professional nurse | 27 |
| P5 | 40 | Hospital-based-Professional nurse | 15 |
| P6 | 56 | Hospital-based-Enrolled nurse (EN) | 34 |
| P7 | 59 | Hospital-based-Professional nurse |
37 |
| P8 | 55 | Hospital-based-Enrolled nurse | 19 |
| P9 | 39 | Hospital-based-Auxiliary nurse (ENA) | 13 |
| P10 | 46 | Hospital-based-Auxiliary nurse | 13 |
ENA, enrolled nursing auxiliary.
The findings of this study highlight the hospital-based nurses’ understanding of HIV self-management and their experiences in providing HIV self-management discharge information (Arison,
Themes and subthemes.
| Themes | Subthemes |
|---|---|
| 1. Comprehending disease presentation and progression | Recognising the nature of HIV disease Understanding lifestyle-related risk factors contributing to HIV transmission in the community Knowledge gaps among hospital-based nurses |
| 2. Patients’ active participation in HIV self-management | Patient activities in HIV self-management Importance of consistency in HIV self-management Side effects of the medication as an additional challenge for the patients |
| 3. Understanding own role of hospital-based nurses in HIV self-management education at discharge | Hospital-based nurses’ responsibility towards PLWHIV with regard to HIV self-management The content of HIV self-management discharge information |
| 4. Factors that inhibit patients’ HIV self-management | Financial challenges Safety challenges Stigmatisation of HIV |
| 5. Fulfilling own responsibility as ward nurse beyond hospital stay | Provision of health education and support for HIV self-management Initiating referrals for out-of-hospital care |
| 6. Healthcare professionals’ need for continuous training to support the provision of HIV self-management discharge information (Arison, |
Training on provision of treatment and HIV self-management-related care Development of a prescribed discharge plan for HIV self-management |
PLWHIV, people living with human immunodeficiency virus; HIV, human immunodeficiency virus.
For hospital-based nurses to be able to provide HIV self-management information to PLWHIV on discharge, they need to have sufficient knowledge not only about HIV infection, but also about HIV self-management aspects. The first theme highlights the participants’ understanding of HIV, how it presents and its progression, and the gaps in their own understanding.
‘It’s a lifelong disease that you live with. So, you manage it accordingly for life for, from what I understand, there’s still no cure yet, so patients are expected or advised.’ (P3; PN; 13 years of experience)
‘It’s now the human um … ah … ah immune deficiency virus. Um … so, the virus is just now breaking off the cells. Um … not sometimes, not rapidly. Can take years to break off the cells and then ah … patient go into full blown AIDS.’ (P4; PN; 27 years of experience)
‘… have, more. How can I explain this now more than one wife? And they don’t believe in protection and things like that, so they don’t normally if you speak about it. Want to take it in almost. I want to. Say, they feel it’s their believes; they say what happens, happens, so they are mostly. They believe if, if it must happen, it must happen. So, I feel that that plays a big role as well.’ (P2; PN; 3 years of experience)
The study participants also expressed that engaging in unhealthy and risky behaviours such as drinking alcohol and smoking, as well as having condomless sex, leads to PLWHIV defaulting on their treatment regimens because they do not keep track of time or often forget to take their medication. This was highlighted by participants 8 and 9, who reported that PLWHIV drink without taking any food and suggested behaviours that patients should adopt:
‘They drink too much. They forget about their medication. They go without taking food. You see, they come back sometimes, or they take their medication with empty stomach. When they like to or any time. So that caused another problem.’ (P8; EN; 19 years of experience)
Having an understanding of patients’ behaviours and beliefs is beneficial as it would inform the information to be shared with patients on discharge.
‘Um … I understand that as it’s autoimmune um, disease.’ (P2; PN; 3 years of experience)
‘Okay, HIV and AIDS happen when the patient’s immune system is like an um, um, human immunity virus when the body’s immune system attacks him, and AIDS is the acquire immunity. AIDS is like a disorder yes, and it’s like I think it starts with HIV, and it ends with AIDS.’ (P6; EN; 34 years of experience)
Hospital-based nurses spend most of their time with patients, and they are always in direct contact with patients who have been admitted to hospitals. This places them at an advantage to educate the patients while they are admitted and integrate HIV self-management into the discharge plan. However, some study participants, including hospital-based professional nurses, recognised their own lack of understanding, and they could not provide the information to the patients. Such gaps are concerning and need to be attended to empower hospital-based nurses in educating PLWHIV who are admitted in their wards:
‘They ask about CD4 count to be honest I’m not always that clued up with CD4 counts um, usually when they start asking questions about their viral loads and stuff like that, I always refer them to the doctor.’ (P3; PN; 13 years of experience)
‘I don’t know. I don’t know. Umm … um … what is CD4 count?’ (P7; PN, 37 years)
The participants in the study indicated that, as part of the discharge, patients’ active participation in HIV self-management activities needed to be included, as it facilitates active engagement and compliance with HIV management, which has the potential to improve patients’ outcomes. The theme also includes a focus on the importance of having the patients maintain consistency in their own HIV self-management, as well as the health burden from the side effects that patients encounter.
‘Look at their own healthy lifestyles. Try less smoking, less drinking and um … Medication, clinics. Um to always wear protection because it can lead to super infection.’ (P5; PN; 15 years of experience)
‘And yeah, um, a regular follow-up. So that you can know, um. How, your, your, you CD4 count is, what is your stage, is it stage four or where, where are we now regarding your, your treatment as well.’ (P4; PN; 27 years of experience)
‘Never run out of medication. Go for your follow-ups and, and, and, that type of things.’ (P7; PN, 37 years of experience)
‘They should not skip any doses at all. Otherwise, it’s seen … It’s seen as defaulting on their medication and normally they regularly go to the clinic as well as to follow up on the medication.’ (P2; PN; 3 years of experience)
‘Um because I work in dermatology as well with some of the patients living with HIV, some patients are being admitted with Stephens-Johnson syndrome. This is a complication of some of the kidney medication they are using. They develop an allergic reaction, skin peels of, gets raw and it is very irritating and sore. The membranes, especially around the oral and nasal areas and the genetalia, peel off.’ (P3; PN; 13 years of experience)
‘I know about hearing problems and also problem with eyesight that is affected. Liver problems also occur, but there is always a doctor that will choose another treatment option.’ (P5; PN; 15 years of experience)
The participants recognised their role and responsibilities towards patients to empower them in HIV self-management. The participants highlighted that their provision of health education upon discharge should include HIV self-management information that would contribute towards avoidance of transmission, the need for and benefits of medication adherence, consequences of non-adherence to medication, the value of accessing community resources, and importance of being actively engaged in own care to facilitate prevention of complications related to the HIV infection.
‘I have a big role because I have to educate the HIV patient. And make them feel strong and make them believe in their self. Firstly, if you educate a patient about this HIV and AIDS and try to explain to the patient that it is not the end of the world if you have HIV. You can still live long if you take your treatment.’ (P9; RAN; 13 years of experience)
‘When my patient is discharge, I first when the patient is discharge I must, I must uh, uh, educate the person how to drink his or her tablets that is the most important thing. And also, so the family also ask the family on board so that we can also tell specifically when it’s an older person, that ah, that person need the medication every day and on that specific time. And uh, uh, if there are challenges you must ask the person if there is challenges uh, uh to get the medication so that you can ask uh, um. There by the day hospital if they can deliver it home if the person don’t want to go and fetch the medication there at the uh, clinic.’ (P4; PN; 27 years of experience)
‘Um … If they are experiencing any side effects from the medication, that they go to the nearest clinic to go and see the sister or the doctor.’ (P1; PN; 12 years of experience)
‘Yeah, there you include like exercise, you include the type of food that they’re eating. And healthy like food. What they must eat like fruits and taking their medication. Drink lots, of water and um, um.’ (P7; PN; 37 years of experience)
Participants reported that their experiences included the realisation of the various factors that inhibit the patients’ HIV self-management efforts. These factors inhibit the ability of PLWHIV to practice HIV self-management, resulting in non-compliance and unhealthy practices, which lead to poor health increases the risk of hospitalisation. The experiences that the participants revealed as inhibitors of patients’ HIV self-management include financial challenges, difficulties in accessing healthcare services and stigmatisation of HIV.
This is of concern, as when continuity of care is lost, patients are at risk of poor health outcomes and worsening of their condition:
‘Yes, as I said, some say there is not always food, and some people live far from the clinics. That’s why I say sometimes it’s financial problems and people just get discouraged by the disease itself and just decide to let it go, believe me. Maybe there are many challenges that I don’t know about and transport and yes.’ (P6; EN; 34 years of experience)
‘Most people find it difficult to get to clinics, they also don’t have money “And things like that, we always see if we can socially help them, if there’s issues that they mention that we um …” “Can help with”.’ (P1; PN; 27 years of experience)
‘Risk factors that bother me for patients, as I said outside, are those who would like to go but do not have access to clinics which um, sometimes as a result of whatever circumstances in the community such as taxi violence and violence from the community. So, sometimes the clinics have to be closed and then they say they missed their dates, and they couldn’t go again for their dates for medication and stuff like that.’ (P3; PN; 13 years of experience)
‘If there’s abusive relationship, then they don’t want that abusive, abusive partner to, to hear, because otherwise that person is going to, to blame her. He will say that it is she that bring it to him. And also, for the children’s sake also, maybe they are specifically, if it is an adult person, it’s older, a lady maybe it’s already a grandma, then she feel now what is the children going to say?’ (P4; PN; 27 years of experience)
‘It’s not easy. It’s not. It’s really not easy. So, the one thing that is they. They are very emotional. And some of some of them, they are scared to come home and they gonna tell at home. I am this and that. And what happened most of them. They, sometimes, they’re gonna hide their medication at home. I don’t want someone to see. I’m taking this. I’m taking this medication at this at this time.’ (P10; ENA; 13 years of experience)
The participants in this study indicated that their role as part of the discharge process of their patient should include motivation for compliance, as it facilitates HIV self-management. The responsibilities that hospital-based nurses need to engage with to ensure their patients remain compliant include the provision of health education and support, as well as initiating referrals for out-of-hospital care.
‘I need to educate that person um and give health education as well also tell him to abstain from, from any. Uh, um, if you have multiple partners, sexual partners. And also, to use condomise please and then. … Um, go for your regular checkups. Yeah, and um, and get the family, get the family involved.’ (P4; PN; 27 years of experience)
‘I said have a healthy lifestyle, so now it’s not just your diet and your exercise programme, also your sexual habits that you have.’ (P3; PN; 13 years of experience)
‘But then I also say that because you go to collect your pills from the clinic every month, you should talk to the nurse or the doctor. Have a conversation with them and tell them what the side effects are and what prevents you from taking your pills.’ (P6; EN; 34 years of experience)
‘We also have social workers and pastoral care workers, should the patients require this.’ (P5; PN; 15 years of experience)
However, the lack of some valuable support at the hospitals was noted as a barrier to their provision of HIV self-management information upon discharge. Such barriers are related to the absence of some of the beneficial support systems at the health facility, which would provide an opportunity for patients to experience the benefits, and encourage them to access the same once discharged:
‘At “this hospital” I don’t know about any support groups that we have, so I’ve never referred someone to a support group, no.’ (P2; PN; 3 years of experience)
In this study, gaps in knowledge were noted, and some of the participants were able to identify such gaps themselves. Hence, the participants expressed their need for further continuous training on the provision of treatment and HIV self-management-related care as well as the development of a prescribed discharge plan for HIV self-management.
‘Um … So, I think we as the staff can maybe receive more training, um … with regards to HIV and AIDS management. Um … and we can maybe just work on a programme where we can follow up on these patients, especially the ones that are being newly diagnosed um … in the hospital.’ (P2; PN; 3 years of experience)
‘You know I would like to know more about the medication so that I can maybe give more input and tell him this is why that happen, and this is why that happen so next time when it happen then you know it’s because of that and that.’ (P6; EN; 34 years of experience)
Study participants voiced their need for training programmes to be available for hospital-based nurses to engage with training on HIV management to equip them to provide comprehensive care to PLWHIV:
‘I’m like I said, if we can um … make training programmes more accessible to the nursing staff, I think at the end of the day we can then give our patients the holistic care that they need, especially if they are HIV positive or if they are, been newly diagnosed, that we can give them the proper education and also get rid of that stigma and that taboo that is basically still around it.’ (P1; PN; 12 years of experience)
‘A plan will be good if only the patient can know how to handle it himself, what to look for um … such as medication shown, to keep clinics and appointment times um … maybe a dietician to look after a healthy lifestyle um …. Counselling, regular counselling because things change so much in the meantime um … and things have to change. So, counselling’s regular monitoring of the CD4 count, yes.’ (P5; PN; 15 years of experience)
This study explored the experiences of hospital-based nurses in providing HIV self-management discharge information at a tertiary hospital in the Cape Metropole. Before highlighting their own experience in providing HIV self-management information on discharge, the participants first presented their perception of the context in which they function and where their patients exist. Similar to previous literature, the findings of the study point out hospital-based nurses’ understanding of HIV disease and its transmission in the community, highlighting the necessity to ensure continued care and monitoring of PLWHIV (Bedert et al.,
This study highlighted that some participants had HIV-related care and management knowledge gaps that need to be attended to. Hospital-based nurses who work in hospitals need to be fully informed about HIV and HIV self-management strategies, as a gap in the knowledge of hospital-based nurses has been documented to result in inaccurate information being shared with patients (Ngcobo & Mchunu,
Fitting with previous literature, this study noted that lifestyle factors and cultural beliefs do influence HIV transmission (Brawner et al.,
Family involvement is equally crucial for active engagement in HIV self-management, as noted by Nabunya et al. (
Moreover, the study brought to light other factors that inhibit effective HIV self-management among PLWHIV. The study highlighted how, in addition to stigma, the social and economic challenges experienced by patients, such as instability in the community and a lack of money to pay for transport, inhibit their active engagement in care, resulting in missed appointments, which contributes to loss to follow-up and non-compliance with HIV care and management plans. These findings are in alignment with previous finding about national high level of unemployment and financial instability (Nyalungu et al.,
Most participants highlighted their supportive role in providing health education to discharged PLWHIV, covering disease progression and symptom management, empowering PLWHIV to manage their condition more effectively. This aligns with findings in the literature that there is a need for comprehensive health education and counselling for PLWHIV, making the provision of HIV self-management information valuable, as health literacy enables patients to make informed decisions about their own health, which is part of active and effective HIV self-management (Bouabida et al.,
Furthermore, hospital-based nurses reported offering emotional and psychological support and encouraging active HIV self-management. However, participants in the study noted a lack of support groups in health facilities, which could have been beneficial for patients during hospitalisation. This unavailability of support groups in the hospital noted in this study is inconsistent with what was reported by Mazambara et al. (
Consistent with gaps noted by the participants, they reported the need for continuous training for healthcare professionals to improve their ability to provide effective discharge information on HIV self-management. These results are congruent with the work of Boakye and Mavhandu-Mudzusi (
This study was only done at one tertiary hospital in the Western Cape, whereas there are many more hospitals and other health facilities that treat PLWHIV. Hence, the study findings are not representative of the hospital-based nurses in the Cape Metropole. The research focused solely on the internal medicine department, so we cannot conclude that the same occurrences apply to other departments within the institution. The focus of the study was on the hospital-based nurses’ experiences.
This study recognises that hospital-based nurses have some gaps in HIV and HIV self-management, which can lead to sharing incomplete or inaccurate information. To address this, it is recommended that nurse educators develop in-service training and Continuous Professional Development programmes to enhance hospital-based nurses’ understanding of HIV, and incorporating digital technology for online educational resources can be an effective strategy that would enhance access to the training resources for all hospital-based nurses in different regions. Considering the burden of HIV in the country and the benefits of HIV self-management, this study recommends that nursing education programmes include an HIV module focused on HIV self-management strategies for PLWHIV. Additionally, this study further recognises the lack of support systems in healthcare facilities or in the communities and recommends the establishment of programmes to support PLWHIV with HIV self-management information upon discharge, including adherence support groups.
This study’s aim was to explore the experiences of hospital-based nurses in providing HIV self-management discharge information at a tertiary hospital in the Cape Metropole. The study highlights hospital-based nurses’ understanding of HIV as a chronic condition, and their perceptions of the context in which patients exist and engage in HIV self-management. Participants understood the challenges PLWHIV encounter, and they highlighted their understanding and fulfilment of their own role in the provision of HIV self-management information on discharge and referral to support services in the community, to ensure empowerment of their patients living with HIV. Gaps were identified, and suggestions to improve the situation were provided for further implementation.
The authors wish to thank all research participants who voluntarily participated in this study. Without their participation, the study would not have been possible. The authors gratefully acknowledge Dr Hilda Vember, the internal moderator, for assisting with data collection and data analysis as an independent coder. They would also like to thank the Stellenbosch University ethics committee and Department of Health and Wellness for granting us permission to conduct this study.
This article includes content that overlaps with research originally conducted as part of Mellissa L. Arison’s master’s thesis titled ‘Exploring the experiences of nurses in providing HIV self-management discharge information at a tertiary hospital in the Cape Metropole’, submitted to the Faculty of Medicine and Health Sciences, Stellenbosch University in 2025. The thesis was supervised by Regis R. Marie Modeste and Tendani Mabuda. Portions of the data, analysis, and discussion have been revised, updated and adapted for publication as a journal article. The original thesis is publicly available at:
The authors declare that they have no financial or personal relationships that may have inappropriately influenced them in writing this article.
Mellissa L. Arison: Conceptualisation, Data curation, Investigation, Methodology, Resources, Writing – original draft, Writing – review & editing. Regis R. Marie Modeste: Conceptualisation, Supervision, Validation, Writing – original draft, Writing – review & editing. Tendani Mabuda: Conceptualisation, Supervision, Validation, Writing – original draft, Writing – review & editing. All authors reviewed the article, contributed to the discussion of results, approved the final version for submission and publication, and take responsibility for the integrity of its findings.
The data that support the findings of this study are available from the corresponding author, Mellissa L. Arison, upon reasonable request.
The views and opinions expressed in this article are those of the authors and are the product of professional research. They do not necessarily reflect the official policy or position of any affiliated institution, funder, agency or that of the publisher. The authors are responsible for this article’s results, findings and content.