‘Not taking medications and taking medication, it was the same thing:’ Perspectives of antiretroviral therapy among people hospitalised with advanced HIV disease

doi:10.21203/rs.3.rs-4015791/v1

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Research Article

‘Not taking medications and taking medication, it was the same thing:’ Perspectives of antiretroviral therapy among people hospitalised with advanced HIV disease

https://doi.org/10.21203/rs.3.rs-4015791/v1

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Journal Publication

published 13 Aug, 2024

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Background

Despite HIV's evolution to a chronic disease, the burden of advanced HIV disease (AHD) remains high among PLHIV on ART, due in part to treatment interruptions. TB is the most common cause of hospital admission and death in PLHIV. As little is known about the experiences of patients hospitalised with AHD, this study sought to discern patterns and forces driving hospitalisation with AHD which could inform strategies to reduce HIV-related morbidity and mortality.

Methods

We conducted a qualitative study with patients hospitalised with AHD who had a history of poor adherence. Thematic analysis based in grounded theory was used in conjunction with the Patient Health Engagement model to analyse interview transcripts.

Results

20 individuals participated in the research process. The most distinct pattern to emerge was the repeated periods of engagement versus disengagement with HIV services. This was driven by physical well-being, together with a denial of HIV and a lack of understanding of the insidious nature of HIV progression in the absence of signs and symptoms. Life circumstances or competing life priorities were another force which drove disengagement from the health services. Health system factors which contributed to disengagement or delayed re-engagement included the inflexibility of HIV services, together with the unhelpfulness and rudeness of clinic staff.

Conclusions

Current practices fail to address the challenges to lifelong ART. A bold strategy to involve people living with advanced HIV as active members of the health care team (i.e. ‘PLHIV as Partners’), could contribute to ensuring health care decisions are compatible with their lives and reduce periods of disengagement from HIV services.

South Africa

advanced HIV disease

retention in care

tuberculosis

In 2022 there were an estimated 29.8 million people living with HIV (PLHIV) on antiretroviral therapy (ART).(1) In South Africa, there are an estimated 7.8 million PLHIV, of whom 90% know their status, 91% of those living with HIV are on ART and 94% virally suppressed.(2) Although the 95-95-95 HIV care cascade depicts HIV care as a linear and unidirectional starting at the time of diagnosis and ending with treatment discontinuation or death, this cascade simplifies the complex treatment journey of PLHIV which includes periods of engagement, disengagement and re-engagement, in what has been described as a cyclical cascade.(3, 4) A systematic review estimated that 25% of PLHIV on ART interrupt their treatment at some stage,(5) and HIV continues to contribute to hospital admissions, morbidity and mortality.(6, 7) A systematic review and meta-analysis reported that despite HIV's evolution to a chronic disease, the burden of AHD remains high among both ART-naïve and ART-experienced patients in South Africa,(8) and in Malawi in 2018, was responsible for a quarter of all hospital deaths.(9)

TB is the most common cause of hospital admission and death in PLHIV and accounts for up to a third of HIV-related deaths,(10, 11) and inpatient mortality.(12) In South Africa, between 1990 and 2019, of 1.4 million TB deaths, almost a million were in PLHIV, and TB remains the infectious disease responsible for the most deaths in the country.(13) A meta-analysis of 36 autopsy studies among PLHIV in resource-limited settings found that TB was considered the cause of death in 91% of PLHIV.(14)

Although much has been written about the factors contributing to sub-optimal retention in care, few studies have explored the experiences of patients hospitalised with AHD due to sub-optimal retention in HIV care. Given that there is no evidence of improvement in outcomes for PLHIV admitted to hospital over time and high mortality rates amongst patients with AHD persist,(15) there is an urgent need to explore the factors contributing to AHD and hospitalisation. Health services can then be equipped to recognise and anticipate who and when PLHIV will be likely to disengage from HIV care and focus on minimising the frequency and duration of periods of disengagement. This study sought to discern patterns and forces driving hospitalization with AHD.

Study design

Open-ended qualitative interviews were conducted as part of an exploratory mixed-methods study on ART adherence. We report the qualitative data here.

Study setting and population

The study was conducted at King Edward VIII and King Dinizulu Hospitals in KwaZulu-Natal over 4 months from 1 October – 30 November 2023. King Edward Hospital is a busy tertiary level hospital with 852 beds, to which many patients with AHD in the eThekwini metro are admitted. King Dinuzulu is a regional hospital, which offers specialised care for patients with rifampicin/multidrug resistant tuberculosis (RR/MDR-TB) for the province of KwaZulu-Natal. AHD was defined as CD4 < 200µL and/or World Health Organization stage 3 or 4 disease.(16)

Due to a delay in getting hospital approval at King Edward Hospital, the study started at King Dinuzulu Hospital. At both hospitals individuals older than 18 years with a history of poor ART adherence were identified by hospital clinicians and invited to participate in the study by a research assistant who conducted the interviews following informed consent.

Data collection

Twenty-one patients were identified, approached in person and agreed to participate in the study. One patient died before being interviewed, but the remaining 20 (10 at each hospital) were interviewed. Sampling was purposive to ensure both hospitals were equally represented together with equal representation of males and females. Where possible interviews were conducted in a private space, but very ill bed ridden participants who could not be moved were interviewed in the ward. Interviews at King Edward VIII Hospital were interrupted at times by nurses administering medication, but no repeat interviews were done. Interviews lasted between 20 and 90 minutes, and covered participants’ HIV treatment journeys, their experiences of illness since their HIV diagnosis, their subsequent treatment and care, together with their reasons for disengaging and re-engaging from care. After piloting, two interview guides were used, one for each hospital, as in addition to questions on HIV diagnosis and treatment, the guide for King Dinuzulu Hospital included questions on HIV and RR/MDR-TB co-infection and treatment. The two guides are attached as Additional file 1 (King Edward VIII Hospital) and Additional file 2 (King Dinuzulu Hospital).

Interviews were done by a female researcher (SH) employed full time by the study, who has 10 years of experience doing open-ended interviews. She established a relationship with each participant prior to starting the interview by explaining the goals of the interview, her involvement in HIV and TB-related studies for over 15 years, her reasons for being interested in the study and particular concern about sub-optimal retention in care in PLHIV and those on TB treatment. Interviews were audio-recorded with consent, transcribed and translated and field notes taken. Transcripts were reviewed for quality and any discrepancies in translation verified and corrected with the assistance of the research assistant who conducted the interviews. Transcripts were not reviewed with participants and participants did not provide feedback on the findings.

Data analysis and theoretical framework

Data from transcripts were coded manually, no data management software was used. Thematic analysis based in grounded theory, in conjunction with the Patient Health Engagement model, was used to analyse the interview transcripts and clinical notes.(17–20) The Patient Health Engagement model considers the role of a person living with HIV as a crucial actor in all phases of the planning and delivery of health care. The analysis was iterative, and transcripts were analysed and reviewed immediately after the interview by the study team and the interview guide updated to reflect new information. The initial analytical summaries of the emerging themes and sub-themes conducted by one author (ML) were verified/modified by another author (JF) and discrepancies resolved via discussion until there was agreement among all study team members on the final analytic framework used. A modified version of the coding tree is available in the figure. Interviews were halted after 20 interviews as no new codes or themes were emerging and thematic saturation attained (determined by ML and JF).(21, 22)

Reflexivity

In qualitative research reflexivity is important,(23) and as some of our team are health care providers, we acknowledge we may have had biases regarding the experiences of the individual participants which led to us overly focusing on biomedical aspects of participants experiences with ART. In addition, as an all-female research team, we recognize our gender may have impacted on the interview process, data analysis, and write-up of the results which could have contributed to marginalization or misunderstanding of male perspectives and voices. We discussed these areas with one another and how they might have biased our analyses and results throughout the research project.

Ethics

Written consent was obtained from all patients willing to participate in the study. The consent included information about the study, participation in the interview and digital audio recording, the voluntary terms of involvement in the study, the assurance of confidentiality and anonymity and consent for publication. Anonymity was maintained by identifying each participant by a unique identification number. Ethical approval was obtained from the South African Medical Research Council (SAMRC) Ethics Review Committee (EC050-11/2020) and the KwaZulu-Natal Health Research Committee. This research was carried out and approval and informed consent were obtained in accordance with the World Medical Assembly (WMA) Declaration of Helsinki - Ethical Principles for Medical Research Involving Human Subjects.

Role of the funding source

This work emanated from research funded by the Bill & Melinda Gates Foundation (Grant number INV-056236). The findings and conclusions contained within are those of the authors and do not necessarily reflect positions or policies of the Foundation.

Participant Characteristics

The demographic details of the participants interviewed are summarised in Table 1 (Table 1: Demographic and HIV Characteristics of Participants). The average age was 32 (range 21 – 46) years and equal numbers of males and females were interviewed. Eleven participants had been living with HIV for ≥ 10 years and four had lived with HIV for ≥ 20 years. The route of transmission for most participants (15) was sexual intercourse. Two participants were infected at birth through vertical transmission and a further two when they were raped, one as a 3-year-old and one as a 9-year-old. The remaining participant, an injection drug user, was infected through the sharing of needles. Eighteen of the 20 participants had had at least one episode of TB.

Table 1

Demographic and HIV Characteristics of Participants
Patient ID	Hospital	Gender	Age (years)	Years living with HIV	ART initiation	Probable source of HIV infection
1	KDH*	Female	23	16	Vertical transmission as mother raped, diagnosed as HIV at 7 years old and ART initiated immediately.
2	KDH	Male	44	9	ART initiated 1 year after diagnosis	Sexual intercourse
3	KDH	Male	35	5	ART initiated at diagnosis	Sexual intercourse
4	KDH	Female	30	5	ART initiated at diagnosis	Sexual intercourse
5	KDH	Male	31	8	ART initiated at diagnosis	Sexual intercourse
6	KDH	Male	33	13	ART initiated 8 years after diagnosis	Sexual intercourse
7	KDH	Male	36	16	ART initiated at diagnosis	Sexual intercourse
8	KDH	Female	39	20	ART initiated a year after diagnosis when CD4 < 200	Sexual intercourse
9	KDH	Female	38	10	2013 diagnosed with HIV	Sexual intercourse
10	KDH	Female	38	12	2011 diagnosed with HIV, but didn’t start Rx immediately	Sexual intercourse
11	KEH**	Male	22	22	Vertical transmission, ART initiated at 9 years old. Participants informed of status 7 years later.
12	KEH	Female	26	5	ART initiated at diagnosis	Sexual intercourse
13	KEH	Male	23	2	ART initiated at diagnosis	Sexual intercourse
14	KEH	Male	28	8	ART initiated at diagnosis	Sexual intercourse
15	KEH	Male	36	11	ART initiated at diagnosis	Sexual intercourse
16	KEH	Female	41	10	ART initiated at diagnosis	Sexual intercourse
17	KEH	Male	28	0.5	ART initiated a week after diagnosis	Syringes used for injecting drugs
18	KEH	Female	46	21	ART initiated 18 years after diagnosis	Sexual intercourse
19	KEH	Female	26	21	Raped as a 3-year-old. Diagnosed as living with HIV 12 years later. ART initiated immediately.
20	KEH	Female	22	6	Raped as a 9-year-old. Diagnosed as living with HIV 7 years later. ART initiated immediately.
KDH = King Dinuzulu Hospital; *KEH = King Edward VIII Hospital; ART = antiretroviral therapy

Table 1:

Thematic Overview

The most distinct patterns to emerge were the repeated periods of engagement versus disengagement with the health services (Figure 1: Treatment Journey of People Hospitalised with Advanced HIV Disease). This pattern was evident both at the time of diagnosis and ART initiation as well throughout participants’ treatment journey.

Physical well-being - the major force driving engagement and disengagement with health services

Participants’ engagement or disengagement with the health services was driven primarily by their physical well-being. At the time of an HIV diagnosis, participants who were physically well delayed initiating treatment until their health deteriorated:

‘The thing is…I was also healthy and didn't see a reason for me to take the pills.’ (Participant #6)

‘I did not take treatment then (2013), I only started taking treatment in 2021. I just saw that I was alright. Why must I take pills when I am alright?’ (Participant #9)

In addition, at the time of diagnosis, there was denial regarding their HIV diagnosis which led in some instances to participants retesting at another facility:

‘I was tested and told that I am HIV positive. They gave me pamphlets that directed me on where I should go since I am positive. I took that pamphlet and threw it inside the bin. After some time I went to another clinic because I was sick. At that clinic you would be asked to take an HIV test irrespective of what brought you there. They tested me and I was given a letter in a white envelope that said I am positive. I started hating clinics.’ (Participant #8)

Once on ART, in addition to physical well-being, disengagement was also driven by a denial of HIV and lack of understanding of the insidious nature of HIV progression in the absence of signs and symptoms. Each participant in turn described how when they were feeling physically well ART seemed unnecessary and they disengaged from care and went through a period of not taking their ART:

‘I just felt like there was nothing wrong. Like not taking medication and taking medication, it was the same thing.’ (Participant #20)

‘I took a risk when I stopped taking the medication, I wanted to test if I would really get very sick like how the nurses said. And I never got sick, I never got sick. (Participant #20)

‘Since I didn’t pick up the pills during the weekend, I will pick them up in the following, but

that week came and passed, many weeks followed after, because I felt fine, I wasn’t sick. A After a couple of years, I started getting sick.’ (Participant #7)

‘When I got discharged from hospital I stopped taking the pills because I was starting to feel

a bit better. I did not take the pills for a long time.’ (Participant #18)

One participant took her ART sporadically ‘I did not take my treatment as I felt fine.’ She subsequently developed TB and described why she stopped taking both treatments:

‘It was when I had too many pills to drink……..‘I was not even that ill at that time, I was fine. I could see that I was alright.’ (Participant #9)

Additional forces driving disengagement with health services

Additional forces contributed to disengagement with the health services and included: 1) Life’s circumstances or competing life priorities; 2) relationships; 3) HIV and TB co-infection; 4) health service factors; and 5) relocation.

Life’s circumstances or competing life priorities

Most participants described how at different times life’s circumstances or more demanding priorities, compounded by limited resources, led to disengaging from care. Three participants described that getting time off work to attend a clinic was, for different reasons, difficult and led to disengaging from care. A female participant described stopping her treatment after the birth of her child, as she felt well and was too busy coping with her first born to go to the clinic to get her ART. A participant with no fixed abode described being unable to take his ART when the police confiscated his belongings, including his ART, to stop him living on the street. He was also unable to take his medication if he did not have water with which to swallow the pills. One participant, a taxi-driver, described how he stopped taking his ART as on arriving at this home one evening, he discovered he had been locked out of his house and all his belongings thrown on the ground. In between trying to recover his possessions, finding accommodation and continuing to drive his taxi, taking ART and accessing an unfamiliar clinic near his new accommodation were not priorities when he was feeling well. Another participant described how, when food at home was limited, she took her ART without food so that her grandfather could eat. The consequences of this resulted in the painful incident described below and led to her disengaging from care:

‘Taking the pills on am empty stomach. They would make my tummy ache, I felt dizzy. I was throwing up, throwing up liquid. I wasn’t even able to concentrate in class and I would sleep……(One day) when my teacher was hitting me (for sleeping) my bag fell open and my pills got spilled to the floor. I was accused of taking drugs and on the verge of being suspended. So my mother came to explain why I had carried pills to school.’ (Participant #19)

A couple of participants described how a death or tragedy in the family led to a period of sub-optimal adherence:

‘My partner and I were both on treatment. He then died. I took it (the treatment) and stopped, took it and stopped……. And then I stopped completely after my brother died. I was stressed, I lost so many people in my life. My children’s fathers, all are gone.’ (Participant #16)

Relationships

Relationships were important in either supporting continued engagement in care or facilitating disengagement. Family support was mentioned by several participants as contributing to their ongoing engagement in care. In contrast, feeling alone and unsupported led to disengagement with care:

‘I felt like I was alone. I felt like I was the only child going through this. Every time I went to the clinic, I was always in my uniform and I would see and be around old people at the clinic. I could not even make conversation with a friend you know and ask: “Friend how were you infected?” That weighed on me a lot and it was tiring that I always have to go to the clinic alone and face those nurses. Those nurses do not have any patience, they do not have time.’ (Participant #19)

Relationships with friends could be detrimental to ongoing HIV care, and a couple of participants described how fraternising with friends who abused substances and partied all night led to poor ART adherence:

‘…..having bad influential friends and not being stable in one place, so I took them (my pills) now and then’ (Participant #1)

‘For me it’s always been the alcohol and drinking with my friend. I just did not have time for them pills so I would always say, ‘I will take the pills the next day’ and I would end up saying the same thing even in the next day.’ (Participant #12)

The fear of inadvertent disclosure, stigma and discrimination continued to impact relationships and limit honesty and openness for several participants. In response to being asked if his friends knew his HIV status, one participant responded:

‘There is no such thing as a friend.’ (Participant #11)

Another participant described the distressing exposure of her HIV status by a school friend and her subsequent disengagement from care:

‘She exposed everything. She literally told them everything. She told them that I have doctors’ appointments every month and they should notice how I don’t show up at school every once a month and they should notice how I am always dressed up on those days. She further said that I go to pick up my pills and they should notice by a jacket I would be wearing. She even told them that I would wear a jacket to hide band aids after I had gotten my bloods taken.’ (Participant #19)

However, for other participants there was an awareness of the extent of HIV infection in their community and they had less anxiety about disclosure:

‘With HIV, it is very rare to find out that there are people who do not have HIV. There are people that don't have HIV, but it's no longer something we are wary of.’ (Participant #4)

One participant described how when he first started ART (around 2010), fearful of disclosure, stigma and discrimination, he would not take his ART to parties that lasted all weekend. More recently (2022), as there is more openness about living with HIV he knows which of his friends are on ART. They have decided that together they must take their ART before they start drinking. However, if the party lasts all weekend, they only take their ART on the first day:

‘We would take the pills on the first day we got to our party venue. We usually arrived at these venues around 6pm and we would start drinking around 10pm. So we could make time go into the bathroom, maybe the 6 of us take out the pills from our pockets and drink them around 8pm. We could not take them for the next days.’ (Participant #7)

HIV and TB co-infection

As KDH is the specialised RR/MDR-TB hospital for the province, all participants had TB. In addition, 8 of the 10 participants interviewed at KEH had had an episode of TB. All 18 participants who had had TB described how sub-optimal ART adherence led to the development of their TB symptoms and their re-engagement with the health services. A taxi driver described his symptoms in the following manner:

‘I was helplessly sick. I had diarrhoea. I used to sweat a lot at night. I had no appetite. Every time I was waiting at the rank, I slept, and I would wake up with a lot of sweat. When a passenger jumps off at a bus stop or if the traffic lights are red, I’d be driving in a lying position. I'd say to myself that I wish I were done working for the day……. When I arrived at the hospital I was admitted. They said I have 'big' TB called MDR.’ (Participant #2)

One participant who had been living with HIV and on ART for 16 years could not remember how many times he had disengaged from care and not taken his ART. However, he did remember his sub-optimal adherence to both ART and TB treatment during each of his three separate episodes of TB. He, together with several participants (both with drug-susceptible TB and RR/MDR-TB) experienced the side effects of TB treatment as more difficult to tolerate than those of ART. This together with the increased pill burden led to several participants disengaging from health care a couple of months after starting TB treatment, when they started to feel physically well again, and stopping taking both their TB treatment and ART:

‘The pills annoyed me and I stopped taking them and I just told myself that if I die I will die, I could not stand drinking a lot of pills.’ (Participant #7)

‘ART is much easier to take than MDR-TB pills as its only 1 pill and no side effects. MDR-TB pills cause nausea and my skin to darken and peel off.’ (Participant #1)

Health service factors

At the time of their HIV diagnosis a couple of participants described the limitations of the counselling they received at this time. The counselling focussed on the treatment, instead of supporting the person who having just heard of their HIV diagnosis, was in shock. This inevitably led to delays in ART initiation:

‘I noticed that I did not undergo counselling that specifically focused on the fact that I just found out that I am HIV positive. So I didn’t have time to process this. I found out and then there was this urgency for me to start treatment because there was no time to waste. I was meant to take the treatment and undergo counselling at the same time. So, when I went through the whole thing, it just went over my head.’ (Participant # 19)

‘I was still in my feelings about this whole HIV thing, so I didn’t take the pills seriously……. I Do remember there was counselling about the pills, but I don’t remember being told about the side effects. I wasn’t too focused on the counselling. I was not interested because I was still in my feelings.’ (Participant #12)

The inflexibility of the health services also contributed to delays in ART initiation. One participant described how following his HIV diagnosis in hospital he was told to get his ART from his local clinic, and how difficult it is for men to go to clinics:

‘I got discharged and they advised me that I will start taking the treatment at my local clinic. So, they transferred me to my local clinic. If I can just be honest, men don’t go to clinics…… My local clinic is by our local taxi rank, so you get to see everyone there, from people whom you used to go to school with, you’d see people coming from work.…..Most men are scared of the clinic…….. Women go to the clinic for various reason and do get checkups done, even to get the family planning injection. Women go the clinics everyday but us men don’t know how to go to the clinics, it’s hard. Oh, my lord! The first thing is the queuing, men don’t queue. Being on the queue is one thing, but having the whole neighborhood watching you and wondering what illness you have is another story.’ (Participant #7)

The inflexibility of the services together with the unhelpfulness of clinic staff also contributed to delays in engagement and in delays in re-engagement following disengagement. One participant described going to a mobile clinic to pick up ART as she didn’t have the money to take a taxi to the fixed clinic. Mobile clinic staff refused to issue her with medication saying her file was at the fixed clinic. With the help of another patient, she fooled the system by pretending she didn’t know her HIV status, so she was retested, retested positive and was issued with her ART.

‘The only issues we have are the clinics…….. If you miss your appointment they shout at you at the clinic, even if you missed your appointment by a day, they still shout at you. They say “this isn’t your appointment date, “and then you wonder how they work because sometimes you find that you still have a few pills left in the container and I explain that I took my pills, it’s not that I did not take them because I would still have a few left. But they still shout at you irrespective. So those are the kind of nurses that we have to deal with.’ (Participant # 13)

Another participant described how, if he was unable to get off work, he might be a day or two late for his appointment, and how the reception he received at the clinic led to him disengaging in care and delay re-engaging:

‘………but the shouting that came from the nurses during that time would make me feel as though I wasn’t human.’ (Participant #7)

Relocation

Given the disruption of moving to another house in another area, relocation was often a factor that led to disengagement with the health services. The inflexibility of the health services and unhelpfulness of staff exacerbated this problem. One participant moved to and from the rural areas depending on whether he was able to get work in an urban area and during this time disengaged from healthcare:

‘They refused to give me a transfer because they cannot give me transfer twice in one year.’

(Participant #3)

Forces driving re-engagement with health services

As described above, having disengaged with health services, participants experienced a deterioration in their physical well-being:

‘So, every time I had defaulted on treatment my life would be at a standstill because I would get sick, so I was affected in that way.’ (Participant #19)

‘I started to feel my body getting weak…..I could feel that a certain percentage of my wellbeing was falling short…..I could tell something was amiss……. Even when I look at myself in the mirror, there would be areas that I notice subtle negative changes, but other people would not notice those changes.’ (Participant #7)

Participants would then start considering whether to re-engage with the health services. A couple of participants delayed re-engaging due to a lack of money with which to access the health services. However, a more commonly reported reason given was the anticipated rudeness and attitude of the nurses. This not only led to delays in re-engaging with care, but also led to accessing care at another facility:

‘As I was contemplating going back to the clinic, I started thinking that the nurses will annoy me with their scolding, so I figured I should change clinics and go start taking treatment at a different clinic.’ (Participant #7)

Critical illness and hospitalisation

Critical illness and hospitalisation led to a renewed commitment to re-engage with healthcare and remain in care, taking their ART regularly:

‘I’m taking them consistently as I almost died. I know where I come from. There's only a bit

Left before I wear Pampers (nappies). So, I don’t dream being on that stage.’ (Participant #1)

‘I'll end up being lifted from this bed, not being able to walk on my own. These pills are my life.’ (Participant #2)

‘I arrived here and I was near death so I don’t see that I will make the same mistake twice. I don’t think that I will be able to endure being sick like that again, because I feel like my ancestors saw me through. So who is going to see me through this time around because ancestors are graceful only for a while? The severity of my illness is something that you might have not been able to endure but I don’t ever wish to experience being sick like that again.’ (Participant #7)

Despite the increased availability of ART in South Africa, the number of PLHIV hospitalised with AHD has remained stable over the last decade, with increasing numbers of those hospitalised on ART.(7) This study explored pathways of care amongst PLHIV on ART to discern patterns and forces driving hospitalisation with AHD. The most distinct patterns to emerge were the repeated periods of engagement versus disengagement with the health services. This pattern was driven primarily by the physical well-being of participants coupled with denial and a lack of acceptance of HIV, together with a lack of understanding of the insidious nature of HIV progression in the absence of signs and symptoms. Physical well-being was often a reason as to why participants stopped taking ART and disengaged from healthcare, whereas a deterioration in health drove participants to re-engage with healthcare. This pattern was evident both at the time of diagnosis and ART initiation as well throughout participants’ treatment journey. Studies from southern Africa have reported that PLHIV do not engage with the health services and initiate ART when feeling healthy,(24) whereas health deterioration motivates engagement with care.(25, 26) Similarly, it has been reported that PLHIV who have disengaged with care, resume care when their health fails.(27) This dynamic movement in and out of care is ubiquitous,(28, 29) and puts PLHIV at risk of poor health outcomes.(8, 30)

Although physical well-being was the primary force driving engagement versus disengagement with the health services, the treatment journeys described by our participants were complex given the other factors they had to negotiate. All our study participants described competing life priorities as a force driving disengagement from the health services. Similar findings were reported in a study conducted in the Democratic Republic of the Congo and Kenya which reported that pathways to hospitalization were marked by social and economic stresses.(31) Others have described the ‘triaging of daily needs’ and ‘competing of survival priorities’ as drivers of disengagement in care, together with reporting that PLHIV re-engage with care when their circumstances change.(32–34)

A limitation of the Universal Test and Treat (UTT) strategy is that at the time of diagnosis the counselling focuses on treatment and not on supporting the person in coming to terms with their HIV diagnosis.(35) For a couple of our participants, this failure to support them as they coped with the shock of an HIV diagnosis, led to a delay in initiating ART and in denial, they retested at another facility. Several studies have reported that coping with the trauma of an HIV diagnosis may lead to a delay in ART initiation, motivating some to retest their HIV status at another facility.(34, 36)

In addition to negotiating economic and social factors, limited and inflexible health services availability were factors driving delayed engagement at the time of diagnosis and treatment initiation and delayed re-engagement with the health services. Although a few of our participants were on dolutegravir, for which there is some flexibility regarding dosing time, all participants described the inflexible dosing time as contributing to sub-optimal ART adherence. In 2021 South Africa launched ‘Operation Phutuma’, a ‘Welcome Back’ strategy,(37) aimed at enhancing retention in care. However, none of our study participants had heard about the strategy or experienced being welcomed back after disengaging from care, instead reporting being shouted at by nursing staff. This led many of them to access care at another facility. Moving facilities has been documented as contributing to disengagement with health serivces,(33, 38) and in a Zambian study which followed 544 PLHIV who were no longer in care at their original facility, over half were in care at a new facility.(39)

In our high TB burden setting, most of our study participants were currently sick with TB or had had an episode of TB disease in the past. For a number of these participants, the side effects of TB treatment and increased pill burden led to disengaging from care, and stopping both their ART and TB treatment as soon as they were responding to TB treatment and feeling better.(40)

In Table 2 below, recommendations to minimise periods of disengagement with health services and facilitate engagement and reengagement are tabulated.

Table 2

Recommendations to facilitate ongoing engagement with health services
Recommendations	Details
PLHIV as Partners	Although most healthcare workers In South Africa know about person-centred care, of which the ‘Welcome Back’ strategy is part, our study findings suggest a paternalistic approach to healthcare still exists, where healthcare workers make decisions and, as has been reported elsewhere, the individual needs, values and experiences of PLHIV are overlooked.(41, 42) Patient health engagement models such as the ‘Patients as Partners’ concept have emerged from person-centred care, and gone even further, suggesting PLHIV should be members of their health care team as they are key in aligning healthcare decision-making with their daily activities and long-term plans.(43) If PLHIV are goal directed, this will enhance retention in care and lead to improved health outcomes.(43–46)
Counselling	Support at the time of diagnosis: When someone is newly diagnosed with HIV, providing support as they come to terms with their diagnosis will facilitate engagement with the health services and initiation of ART. Ongoing support and counselling: Counselling and peer support can be beneficial in considering HIV status disclosure with family or friends.(47) Ongoing information: Continued, and repeated, information on HIV and ART is necessary to address the limited knowledge and understanding of HIV and disease progression. HIV and TB co-infection: PLHIV who develop TB need information on the interrelationship between HIV and TB, in addition to counselling and support to cope with the pill burden.(48) Information on possible adverse drug events and returning to the clinic for symptom management can contribute to optimal retention in care. Grief counselling: Both HIV and TB involve loss, the loss of personhood, health, partners and family members. In providing person-centred care, identifying PLHIV who are struggling with loss and complicated grief, and providing psychosocial support will enhance retention in care.
Health system factors	Inflexibilities within HIV service delivery need to be addressed including: • the establishment of efficient person-centred transfer systems across facilities, • flexible ART appointment schedules that accommodate unexpected life events,(8) • multi-month scripting for ART (3- or 6-months), • gender sensitive HIV services to support the retention of men in care.(49)
Ongoing research	Ongoing research and the development and implementation of new technologies such as long-acting injectable ART could reduce the frequency of ART visits and minimize competing priorities between HIV care and the stresses of daily life outside of the clinic.(29)
ART = antiretroviral therapy

Table 2:(8, 29, 41–49)

Limitations

There are multiple limitations to this study. First, the study relied upon participant recall regarding periods of engaging and disengaging from healthcare, recall bias may have affected the narratives of these events as for some participants they happened many years ago. Second, some of those we interviewed were very ill and unable to talk at length. One participant was short of breath and as talking was tiring and increased her discomfort, her answers were very limited. Another participant who also found talking tiring, died a week after the interview. Third, a couple of the participants interviewed at KEH were too ill to move out the ward to a private area to be interviewed. This lack of privacy, together with the busyness of an acute hospital medical ward limited the extent and depth of the interview responses. Fourth, this was a small-scale qualitative study whose experiences are unlikely to be generalizable to other populations and further research will be needed to confirm the findings we report here.

The treatment journeys of people hospitalised with AHD were characterised by periods of engagement and disengagement with the health services, dependent on their physical well-being. Involving ‘PLHIV as Partners’, as members of their health care team, may contribute to ensuring health care decisions are compatible with their daily activities and long-term plans, thereby reducing periods of disengagement and facilitate more rapid re-engagement with the health services. Although this will involve a radical shift in healthcare worker practices, bold strategies are needed to reduce the burden of morbidity and mortality in PLHIV who have disengaged from care.

Acknowledgements: The authors of this paper are thankful to all participants who generously shared their time and experiences of living with HIV and being hospitalised with advanced HIV disease. We are also thankful to the staff working to support people living with HIV at the health centers and hospitals.

Authors contributions: ML, SH, PM, TG and JF conceptualized and planned the study. SH and ML collected the data and did the interviews. ML and JF analyzed the data. All the authors contributed to the writing of the manuscript.

Funding Source: This work was funded by the Bill and Melinda Gates Foundation (Grant number INV-004597). The funders were not directly involved in the data collection, analysis, write up or review in any way. The findings and conclusions contained within are those of the authors and do not necessarily reflect positions or policies of the Foundation.

Availability of Data and Materials: The datasets used and/or analyzed during the current study are available from the corresponding author on reasonable request.

Competing Interests: The authors have no competing interests to declare.

Consent for Publication: Participants all agreed that the data collected during their interview could be published.

Ethical approval and consent to participate: Written consent was obtained from all patients willing to participate in the study. The consent included information about the study, participation in the interview and digital audio recording, the voluntary terms of involvement in the study, the assurance of confidentiality and anonymity and consent for publication. Anonymity was maintained by identifying each participant by a unique identification number. Ethical approval was obtained from the South African Medical Research Council (SAMRC) Ethics Review Committee (EC050-11/2020) and the KwaZulu-Natal Health Research Committee. This research was carried out and approval and informed consent were obtained in accordance with the World Medical Assembly (WMA) Declaration of Helsinki - Ethical Principles for Medical Research Involving Human Subjects.

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No competing interests reported.

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‘Not taking medications and taking medication, it was the same thing:’ Perspectives of antiretroviral therapy among people hospitalised with advanced HIV disease

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