Qualitative Identification of HIV Care Engagement Challenges and Preferences for Differentiated Care Service Delivery Models Post-Incarceration in South Africa

Abstract

Inadequate access and timely linkage to treatment for people recently released from incarceration is a major barrier to HIV care. Differentiated service delivery models (DSDMs) that do not rely solely on clinic attendance need to be utilized, bringing HIV treatment closer to re-entrants and addressing current challenges with treatment attrition post-release from incarceration. DSDMs have demonstrated potential as alternatives to clinic-based treatment collection. We conducted a qualitative study to explore barriers to HIV care linkage and perceptions on the use of DSDMs for HIV treatment following release. We interviewed individuals, released from incarceration while on HIV treatment in Gauteng, South Africa. Participants had to be people recently released from incarceration, above the age of 18 years, living with HIV and taking Antiretroviral Therapy (ART) at their time of release from incarceration. Our results indicate that there was a high degree of enthusiasm among re-entrants for DSDMs. It is important to generate both qualitative and quantitative evidence to support DSDMs as alternatives service delivery models to clinic-based care among re-entrant populations. Based on the findings of this study, DSDM services can be part of the solution to closing the HIV treatment attrition gap among re-entrants as they transition from the prison environment to community-based care.

Keywords

reentrants linkage to HIV care community re-entry barriers preferences differentiated service delivery models

Background

An objective of the South African Department of Health for HIV control in correctional facilities is to ensure the successful re-integration of people recently released from incarceration into community-based HIV care. The post-release guidelines stipulate that on release, individuals living with HIV should be provided with a transfer letter, a list of alternative healthcare facilities, and active referrals from the release facility to community health facility—this includes calls by the releasing prison facility to a community-based clinic to inform them of the release and that the individual will be transferring to their health facility. Lastly, the releasing prison should make telephone follow-up with the reentrants to ascertain engagement in care at the local clinic.¹

Despite guidelines in place, HIV care engagement post-release is complex and nuanced, with multiple factors resulting in reduced rates of people engaging in care during the transition. In Gauteng, South Africa, it is estimated that only 34% of released individuals report to health care facilities within 90 days post-release.² Furthermore, approximately 56% of released individuals are estimated to disengagement from care in the first 6 months of community re-entry.²

Factors such as stigma, socioeconomic instability^3-5 and lack of social, informational, instrumental, and emotional support⁶ have been identified as some of the barriers to HIV care engagement following release. There are also gendered differences in how people receive support from family members, with women reporting more support than men.⁶ Health system challenges such as long wait times, overcrowding^7-10 and bureaucratic factors^10-14 negatively affect HIV care linkage post-release. Gains made in ART provision during incarceration are reversed.^2,3,5 Considering the diverse needs and challenges of this population, it is time to deliver HIV care to them differently.^2,5,6

This study seeks to describe participant perspectives about the use of differentiate service delivery models (DSDMs) as unique solutions for HIV care delivery among re-entrant populations. The findings of this work complement existing work on barriers to HIV care as well as contribute new insights on DSDMs as options among re-entrant populations.

Methods

We conducted a qualitative study using semi-structured interviews to understand barriers to HIV care access and DSDMs as options for HIV service delivery among people with previous criminal justice involvement. The study was conducted in Gauteng, South Africa, a region with approximately 15 million people. Estimates indicate that nearly 2 million people were living with HIV in Gauteng in 2019.²

Data Collection

Between October 2017 and September 2018, we interviewed 32 people with previous incarceration. We recruited participants 18 years and older, who were 3 months prior to release and receiving antiretroviral therapy (ART) from 3 correctional centers, in Gauteng, South Africa. Eligible participants who agreed to be followed up after release were enrolled into the study. Telephonic follow-up was done after the individuals were released, with information about the interview and a request to participate. Those who could be reached and agreed to participate provided written informed consent on the day of the interview. One participant was excluded because they were on TB treatment. One-time interviews were conducted face-to-face by the first author, a female who was a study coordinator with a Master of Social Science degree at the time of the interview. One interview was conducted by a trained female research assistant with a Bachelor of Arts background. Interviews were conducted in participants’ language(s) of choice (English, isiZulu, isiXhosa, or Setswana). The interviewers had no prior relationship with participants and were meeting them for the first time during the interviews. Private locations such as offices or participants’ homes were selected, according to participants preferences. Interviews lasted 1 to 2 h.

A semi-structured topic guide explored experiences relating to HIV care engagement after release through questions about participants’: experiences where they collected their treatment, preferences for ART collection, experience of disclosure of HIV status and incarceration history. The interview guide was developed by the authors based on prior work and expertise in the field, it was not validated, nor was it pilot tested. All interviews were audio recorded, and researchers took notes during interviews, interviewing continued until we had reached saturation where no new information or themes were coming out.

This study was reviewed and approved by the University of the Witwatersrand Human Research Ethics Committee, the South African Department of Correctional Services Research Review Committee, and the Johns Hopkins University Institutional Review Board (USA).

Data Analysis

Interviews were transcribed verbatim, translated to English, and uploaded to MAXQDA (VERBI Software, 2021) for coding and analysis. The analysis took place deductively and inductively by exploring a priori topics but remaining open to unanticipated, emergent themes. Three team members independently coded transcripts with the final coding structure, periodically checking for consistent use of codes. After initial coding of each transcript, 2 members of the coding team constructed a summary profile for each participant that explored several categories, such as linkage to care, including ART access and adherence post incarceration, preferred mode of delivery for ART and employment status. Following coding, all text segments were further analyzed to document barriers and preferences related to ART access.

Participants’ experiences with clinic-based treatment collection are briefly outlined below, followed by their opinions of the use of DSDMs for treatment access. To preserve the participants’ anonymity, we only specify the following information after a quote: the gender (W for Woman and M for Man), age in years, employment status (employed, self-employed, unemployed), HIV care engagement status (in care, not in care).

Results

Study Population

Of the 32 participants who completed the in-depth interviews, 23 were men (71.8%) and 9 were women (28.1%). The median age of participants was 37 years, 21.8% (7/32) were working either full-time or part-time, while 78.1% (25/32) were unemployed. Two-thirds of participants (23/32; 71.8%) were single (5/32; 15.6%) were cohabiting, and (4/32; 12.5%) were married, (3/32;9.4%) self-reported current substance use. Twenty-seven participants remained engaged in HIV care post-release, primarily through clinic-based collection of medication, with a few utilizing quick pharmacy pick-up points. Five participants were not engaged in HIV care.

Substance and opioid use disorders contributed to treatment attrition among participants who self-reported current substance use, however, the number of participants who self-reported substance use was not representative enough for this paper to report on. The results will therefore focus on factors such as gender, emotionally and materially unsupportive family environments, clinic overcrowding, prison transfer letters, and other documentation required at the point of care acted as barriers to treatment seeking.

Gender Norms and Emotionally and Materially Unsupportive Family Environments

Gender norms and family support interacted to influence HIV care engagement. Women stated that family members or partners provided money for transport on clinic days. Food and shelter were also provided for women as they transitioned into communities. While women received emotional and material support, men reported not receiving any support.

At home they are saying they don’t have money; they supported me for five years [while in prison]. As a man and now that I am outside, I must see what to do.

(M 45, single, unemployed, not in care)

Lack of material support from social networks or family members often meant that participants had limited access to food. A 46-year-old unemployed man emotionally recounted how he could not continue taking his treatment because of food scarcity:

I stopped [taking medication]. Reason being I have nothing in my stomach - how can I take medication? When I do not have anything [to eat] I cannot drink medication. At home everyone is looking out for himself or herself in terms of what he or she eats and what time they do it.

(M 46, single, unemployed, not in care)

This gender norm and expectation for men to be self-reliant became an obstacle for HIV care engagement. Providing for their material needs often conflicted with ART continuation and participants disengaged from HIV care in, prioritizing casual job opportunities over clinic attendance. One participant stated this in this way,

I decided that I won’t leave money because of a pill

(M 46, single, employed, not in care)

Overcrowding in Community Clinics and Prison Transfer Letters

Treatment collection at clinics was characterized by overcrowding, long queues and fears of stigma. Participants contrasted it from treatment collection inside prison which they described as a regimented system. Words such as “hard,” “difficult” and “stress” were associated with clinic-based treatment collection. Recalling her experience of collecting treatment while still incarcerated one 24-year-old woman said:

If you are inside [prison], you’re relaxed because everything is available to you, even the [HIV] treatment. [outside] you’ll go to the clinic, join the queue, and get your treatment. . .that is hard for me. Going to the clinic is too difficult. I get stressed when I go. I become stressed when the two months’ period is coming to an end, and my treatment is running low. I become too stressed.

(W 24, single, unemployed, in care)

Standing in queues and overcrowding were adjustments that participants found challenging. A 45-year-old man wished that people are informed before release about the challenges of community care engagement

We face challenges at the [community] clinics because they are overcrowded. It is different from inside [prison]. Inside everything gets done for you. Yes, they do everything for us, I am not saying it is alright. It is not good to be in prison because your things are in a stand still when you are there, I am just saying such [clinic] challenges happen when you’re outside of prison, the people must be prepared when they are about to be released that they will face challenges such as standing in queues when they come out.

(M 45, single, employed, in-care)

The individualistic approach to community care engagement was further complicated by burdens of bureaucratic barriers including requirement for prison transfer letters and unclear clinic catchment area demarcations. All participants were required to provide a prison transfer letter before they could access treatment. In some cases, this acted as a barrier to treatment access as various factors during transition led to participants losing the document. A 32-year-old man recalled his attempt to link to care which was hindered by his failure to provide a transfer letter,

I went there [to the clinic] and they told me that I don’t have transfer [letter]. I explained that I have some pills that I brought with me when I came out of prison. . .I even showed them the card, asked them to call this specific place [prison], they said they have to get [the] transfer letter, so I left them, and I eventually gave up on getting treatment because I did not have other plans to get the transfer [letter].

(M 32, single, unemployed, not in care).

The transfer letter contained information about the place of prison, date of release as well as treatment regimen. This information was involuntary disclosure of participants’ criminal history, and HIV status. Women did not want to reveal their criminal past and thus found it difficult to present the transfer letters at healthcare facilities. This is illustrated by the participant below,

What was most difficult was that I was out of correctional and then, what was next. . .I was on treatment. I had to go to the nearest clinic to give them the form [transfer letter] that I was convicted. I was scared that the nurses would be saying “Hey! You are an ex-convict?” That’s what was the most difficult thing for me.

(W 40, married, unemployed, in care)

When asked about preferences for DSDMs, participants expressed a desire to collect their HIV treatment outside of routine clinic settings. We explored 2 models, (adherence clubs, easy pharmacy pick-up).

Treatment Adherence Clubs

Treatment adherence clubs were preferred, with participants indicating that such platforms could provide informational and emotional support during HIV care engagement. This model of care was preferred over clinic attendance because of the perceived emotional support that participants will receive from peers.

The group option is better, because we can get a chance to discuss, you find that you don’t have a person to talk to at home. So, if I’m part of this group, I know I am familiar with them since we have been taking treatment together and then we can talk.

(W 24, single, unemployed, in care)

Participants also highlighted that support groups could be good platforms to be educated about conflict resolution with their families. As reentrants, they experienced conflict with family members, and they perceived that treatment adherence clubs could provide opportunities for information to deal with challenges they faced.

“We will be talking about these things, coming from prison, HIV health, ARVs and situations at home you see. . .we will be advising one another. . .I know there are some who are not comfortable at home. I am [one of those] who are not comfortable at home. Sessions like this help us to focus. When you don’t get someone to talk to sometimes you lose direction.

(M 45, single, unemployed, in care)

Quick Pharmacy Pick-Up

Pharmacies also emerged as preferred models for treatment collection, being valued for efficiency. A self-employed woman indicated

I prefer the pharmacy. The pharmacy is easy and not time consuming.

(W 38, married, self-employed, in care).

Pharmacies were also preferred for their convenient location at shopping malls or within areas of business, particularly for participants who were employed or job seeking. In addition to their convenient locations, pharmacies operated longer working hours than clinics,

The pharmacy is [good] because they open at six and close at six, even if you are coming from work after knocking off at 5pm you pass and collect your medication. Even during lunch, you can go because my lunch is one hour thirty minutes, so I go there, when I get there, I do not get a line. I think that is the easiest way.

(M 45, single, employed, in care)

Furthermore, participants valued that they could have other people collecting the medication for them

But for me now, I say machine [at the pharmacy] is better. Because I can even send somebody to go and collect this medication for me. . .yes.

(M 47, married, employed, in care)

Lastly, pharmacies were perceived as non-stigmatizing and offered anonymity,

Because when you go to the chemist no-one will judge you right? Because it is where medicines are bought and collected, so no-one will be watching to see what you are doing there, no one will make you feel small.

(W 28, single, unemployed, in care)

While many participants expressed willingness to be part of treatment adherence clubs, or preferred treatment collection to be at pharmacies, there were concerns regarding the need for transport to get to these locations. One man summed it in the following way,

Sometimes you [will] struggle with money to go to the pharmacy to collect the medication. Or even if you have the support group, it might be at a place [location] where you are going to struggle with money to get there. I do not want you to put [the support groups] in places where we end up with a problem of having to get a taxi to get treatment

(M 45, single, unemployed, in care).

Another potential barrier with differentiated service delivery models was that there were no medical professionals present during treatment collection as one participant highlighted,

If I go to the clinic, my health will be checked by nurses, but in the group, we will advise each other about life, [I’ll] take my medication and go home - no one will be checking up on my health.

(M 37, single, unemployed, in care)

Discussion

In this study we explored barriers and novel approaches to HIV care using differentiated service delivery models following release from incarceration in South Africa. This study is strengthened by the inclusion of perspectives of re-entrants regarding their preferences for DSDMs for HIV care access. Our findings thus provide new perspectives in the field of linkage to care among re-entrants.

Challenges related with linkage to care post incarceration have been widely documented in literature^2,5,17 consistent with the challenges previously identified, participants reported lack of instrumental support from social networks and family members; gender norms where men more than women reported a lack of support particularly from immediate family and food scarcity. While men were expected to be self-reliant after release, participants reported that it was not always possible. due to afore mentioned challenges, some participants discontinued care, this was similar to research findings which stated that meeting basic subsistence needs can derail treatment seeking, among recently released people living with HIV in Zambia.¹⁷ Overcrowding and long queues at health facilities has been extensively reported,^7,18,19 participants in our study reported long waiting times at the clinics meant loss of income generating opportunities elsewhere. Alternative to this, quick pharmacy pick-up emerged as desirable due to the proximity to business areas; longer operating hours; and their non-stigmatizing nature. Participants thus welcomed DSDM options and supported their implementation for re-entrants.

Having to provide prison transfer letters to access treatment at clinics involuntarily disclosed participants’ criminal history, this negatively impacted participants’ willingness to visit clinics for their HIV care. Our research finding reflect those previous studies which found that^6,16,20 a differentiated service delivery model with curriculum and peer support, designed to address the needs of people with HIV returning from incarceration, can improve the primary outcome of enrollment in HIV treatment services,¹⁶ adherence clubs offer the support,^6,14 while easy pharmacy pick-ups can offer flexibility in the timing and location of service provision, which can potentially assuage many barriers encountered by re-entrants, particularly in resource-constrained settings.^11,15,21

Peer support was preferred by men,^22,23 which again was found in other studies in Southern Africa,^6,17,23 where participants valued informational support from peers with shared experiences. Preference for this kind of support has also been emphasized in TB research in the USA, where support groups have been identified as beneficial in promoting care engagement.²⁴ In the South African context, a 2023 study found strong evidence that a differentiated service delivery model with curriculum and peer support designed specifically to address the needs of people with HIV returning from incarceration improved the primary outcome of enrollment in HIV treatment services.¹⁶

Arguments made by participants against the DSDMs was the possibility of transport needed to reach places where support groups are conducted or pharmacies. Additionally, the absence of trained medical professionals was stressed as a concern. Some of the participants expressed a desire to be seen by medical professionals regarding their health during treatment collection. This finding is similar to findings by Mukumbang et al, who investigated patient experiences with differentiated service delivery models for HIV Treatment and reported that patients in the quick pharmacy pick-up model experienced less information sharing with peers; communication and education from medical professionals; and emotional/psychological support.¹⁹

This work does not suggest that logistical interventions, such as removing the prison transfer letter requirements or introducing DSDMs for re-entrants could resolve the barriers to HIV care post release. This would be an oversimplification of the complexity of disengagement which is influenced by multifactorial and interconnected barriers. We want to highlight the potential that DSDMs have in providing an alternative treatment option for re-entrant populations.

Conclusion

This study provides an overview of opinions in relation to barriers to HIV care post-incarceration and DSDMs for care in Gauteng, South Africa, a country with a high HIV burden. Despite being a study involving participants with limited experience of using differentiated service delivery models for HIV care, our qualitative results offer an understanding that enables us to see the experiences of re-entrants with clinic-based HIV care and potential of using DSDMs and make recommendations regarding their preferred service delivery models.

The findings improve our understanding not only of the existing barriers in care engagement, but they also offer an overview of participants perspectives regarding differentiated service delivery models for HIV care. HIV programs may fail to achieve their goals if they do not integrate the social dynamics of health systems that are driven by individuals’ needs and experiences. The interviews show that re-entrants are willing to adopt alternative forms of treatment access. These findings could help advocate for use of DSDMs among people released from incarceration to improve the high rates of disengagement and treatment attrition.

Study Strengths and Limitations

Our study had several strengths, not only does it identify barriers, but it also highlights preferences for HIV care engagement post-incarceration. The inclusion of diverse participants, including both men and women, as well as those who were employed and unemployed post-release, provided valuable insights into the varied perspectives on HIV care linkage during the release period. Additionally, the use of interviewers who were familiar with the correctional facility and post-release conditions allowed for opportunities for in depth probing. A limitation of this study is that the topic guide used for this research was not validated, and it was not pilot tested. Using an interview guide that has not been validated or pilot-tested can present several methodological limitations. Without validation, it is uncertain whether the questions effectively captured the constructs of interest or are interpreted consistently by participants, which may have resulted in superficial, or misunderstood responses. As a research team, we countered this effect by ensuring that the interviews are conducted in participants’ languages for clarity of concepts.

The lack of pilot testing also increases the likelihood of poorly sequenced, unclear, or leading questions, potentially introducing researcher bias and inhibiting rich data generation. The researchers were aware of this and ensured that the interviewers were well trained and experienced individuals who understood the concepts of reflexivity and researcher bias during the interview process. Furthermore, an untested guide may overlook important topics or perspectives, leading to incomplete coverage of the research aims. This limitation was avoided by ensuring that all interviews were conducted by only 2 interviewers, who with experience would be able to be familiar with the research aims and asking questions that will not introduce inconsistencies across the interviews.

Another limitation of this study is that only 5 of the 32 participants were disengaged from HIV care, which limits the depth of insights into the challenges faced by this critical subgroup. Secondly, the interviews were conducted between 2017 and 2018 which means there are no opportunities to include more participants disengaged from HIV care.

Lastly, this study did not include transgender men or women, and we acknowledge that their preferences may have been different from those raised by cisgender individuals. Given the high burden of HIV among transgender individuals, future research can aim to address these limitations by conducting multi-site studies with larger and more diverse samples particularly those who are disengaged from care and transgender men and women.

Footnotes

Acknowledgements

We are grateful to the study team that conducted this study, and to all study participants involved. We thank the National Institutes of Health for funding this work. Our work was supported by the National Institutes of Health through a National Institute of Mental Health planning grant [grant number #5R34MH115777]. The funding source had no role in the decision to submit the manuscript for publication. We would like to thank the participants for their contribution to the study.

List of Abbreviations

Abbreviation Meaning

CSS Civil Society Stakeholders

MTB Mycobacterium tuberculosis

FIND Foundation for Innovative New Diagnostics

HCW Healthcare worker

HIV Human Immunodeficiency Virus

LMIC Low-to-middle income country

PHE Public Health Expert

RIF Rifapentine

SA South Africa

TB Tuberculosis

UK United Kingdom

USA United States of America

WHO World Health Organisation

ORCID iDs

Nasiphi Mqedlana-Ntombela

Jill Owczarzak

Ethical Considerations

This study was approved by the Health Research Ethics Committee, University of Witwatersrand (AUR 2-6-215 I-THUBA 2A/170702). All participants provided written informed consent to be able to participate in the study (AUR 2-6-215 I-THUBA 2A/170702). Ethics approval was granted on 29 August 2017 with ethics approval number: 170702. All methods were carried out in accordance with relevant guidelines and regulations.

Author Contributions

CJH and SC conceived the research study and were the co-principal investigators. CJH, SC, TM, and JO designed the study. TM, and NMN implemented the study and collected the data. JO and NMN verified the underlying data reported in the report. JO and NMN did the qualitative analysis. CJH obtained funding. All authors had full access to all data in the study. All authors reviewed the report and had final responsibility for the decision to submit for publication. CH, TM, and SC, conceptualized this research and decided on the methodology used. The formal analysis was conducted by NM-N & JO. NM-N led data collection, supervised by TM while TM & CH led data curation and data visualization. CH, SC, TM supported funding acquisition; NM-N led general administration of this research. Overall, this work was supervised by TM. NM-N wrote the original draft of the manuscript, with all authors providing review and edits for the final manuscript. All authors read and approved the final manuscript.

Funding

The authors disclosed receipt of the following financial support for the research, authorship, and/or publication of this article: This research was supported by the National Institutes of Health (NHI) Award Number - 0009. The content of this paper is solely the responsibility of the authors and does not necessarily represent the official views NHI. NIH #5R34MH115777-01. Further support was received from the Wits-UNC Partnership: Expanding Capacity in HIV Implementation Science in South Africa. The Wits-UNC grant was supported by the Fogarty International Center of the National Institutes of Health under Award Number #D43 TW009774.

Declaration of Conflicting Interests

The authors declared no potential conflicts of interest with respect to the research, authorship, and/or publication of this article.

Data Availability Statement

Given the sensitivity of the data due to the social and legal context in South Africa, deidentified participant data, along with supporting documentation (study protocol, interview transcripts), are available upon request from the corresponding author pending appropriate Institutional Review Board and institutional (South Africa Department of Correctional Services, Aurum Institute, and Johns Hopkins University) leadership approval. All the data supporting the findings of this study (AUR 2-6-215 I-THUBA 2A/170702) approved on 29 August 2017, are contained within this report. Datasets used in this study may be requested from The Aurum Institute’s Data Steering Committee or principal investigator: choffmann@jhmi.edu. This is an open-access report distributed under the terms of the Creative Commons Attribution License, which permits unrestricted use, distribution, and reproduction in any medium, provided the original author and source are credited.

Definitions

Differentiated service delivery models: Responsive, client-centered approach that simplifies and adapts HIV services across the cascade to better serve individual needs and reduce unnecessary burdens on the health system. For this study, we focused on adherence clubs and easy pharmacy pick-ups.

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