“It is like they throw food to a dog”: a qualitative exploration of barriers and facilitators to retention in care among people with history of being lost to follow up from drug-resistant tuberculosis in Johannesburg, South Africa.

doi:10.21203/rs.3.rs-4437737/v1

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Research Article

“It is like they throw food to a dog”: a qualitative exploration of barriers and facilitators to retention in care among people with history of being lost to follow up from drug-resistant tuberculosis in Johannesburg, South Africa.

https://doi.org/10.21203/rs.3.rs-4437737/v1

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Background:There have been advances in drug-resistant tuberculosis (DR-TB) diagnosis, treatment, and service delivery. However, as DR-TB often affects those with limited resources, people with DR-TB struggle with socioeconomic and psychosocial challenges, which may impact retention in care. Consequently, advances in DR-TB diagnostics and treatment have not resulted in DR-TB programs meeting the 75% treatment success targets set by the World Health Organization (WHO).

Methods: We interviewed people with DR-TB who had previously disengaged from care and their family members to identify barriers and facilitators to retention in care as well as possible strategies to address these barriers. We recruited 16 people with DR-TB and 8 family members from five health facilities in Johannesburg, Gauteng Province, South Africa. All DR-TB patients disengaged from DR-TB care for ≥ 45 days. Semi-structured interviews and focus group discussions were used to collect data, which were analysed through thematic content analysis using a multidimensional adherence model.

Results: The facilitators of retention in care were positive interactions with health care workers (HCWs), nutritional support, transport from local clinics to DR-TB sites, self-motivation, and emotional support from family members. Barriers to optimal retention in care included a limited understanding of DR-TB disease and treatment, transport challenges, side effects of the medication, pill burden, stigma and discrimination experienced at health care facilities other than DR-TB facilities, food insecurity, and financial difficulties, which included loss of income and a lack of transport money and mental health challenges such as fear, anxiety and feeling lonely and unsupported.

Conclusion:The findings from this study highlight the need for TB treatment programs to collaborate with people being treated for DR-TB and their families to understand facilitators and barriers to retention in care and how these could be addressed to facilitate optimal retention in care.

DR-TB

Socioeconomic and psychosocial challenges

Barriers

and facilitators of retention

Family members

DR-TB patients

Almost half a million people develop drug-resistant tuberculosis (DR-TB) worldwide each year.⁽¹⁾ Globally, treatment success rates for DR-TB are approximately 60%.⁽¹⁾ Despite advances in diagnostics and shorter all-oral treatment regimens, treatment outcomes continue to fall short of the 75% success rate target set by the WHO, and DR-TB remains a threat to TB control and achievement of the End TB targets.⁽²⁾ Suboptimal retention in care undermines DR-TB programs and contributes to low treatment success rates together with ongoing transmission of the disease, the development of further resistance and DR-TB-related morbidity and mortality. ^{(3, 4)} Socioeconomic factors often drive poor retention in care, as many people with DR-TB have limited resources and live in overcrowded areas without easy access to health facilities. ^(5–7) However, there are also psychosocial and health service factors that undermine adherence to DR-TB treatment.^(3–5) If we understand the reasons for suboptimal retention in care in patients receiving DR-TB treatment from their own perspective and that of their family members, we could develop tailor-made strategies to address these challenges and improve their retention in care. In this qualitative study, we explored the barriers and facilitators to retention in care experienced by DR-TB patients who disengaged from care and their families and, with them, identified strategies for the development of a socioeconomic and psychosocial package to improve retention in care.

Study aim

The aim of the study was to explore barriers and facilitators to retention in care experienced by DR-TB patients who disengaged from care and their families and, with them, to identify strategies for the development of a socioeconomic and psychosocial package to improve retention in care.

Study design

This was a qualitative study using a phenomenology approach in which we investigated the barriers and facilitators to retention in care that DR-TB patients experience together with strategies to address these barriers and promote retention in care. Semi structured interviews (SSIs) and focus group discussions (FGDs) were conducted with DR-TB patients and their family members. Five DR-TB facilities were purposefully selected due to their high loss to follow-up (LTFU) rate and to ensure the representation of both large and small facilities.

The specialized DR-TB hospital was included to ensure the inclusion of Pre-XDR (Pre extensively drug resistant TB) and XDR-TB (Extensively drug resistant TB) patients. DR-TB patients who met the following criteria were included as study participants: 1) patients with microbiologically confirmed DR-TB who started treatment between the 1st of December 2022 and 1st of January 2023; 2) patients ≥ 18 years of age; and 3) patients who had not engaged with health services for 45 days or more during the course of their treatment. Medical records were reviewed to determine which patients were eligible for participation in the study, their treatment regimen, response to treatment, and treatment outcomes. Family members of DR-TB patients were eligible for inclusion in the study if they were ≥ 18 years of age and had lived with one of the DR-TB patients recruited for the study for ≥ 3 months.

Study setting

The study was conducted in Johannesburg, Gauteng Province (GP), South Africa, from 03 May 2023 to 20 July 2023. DR-TB treatment in Johannesburg is delivered at 9 facilities. One of these hospitals is a specialized DR-TB treatment hospital that provides both inpatient and outpatient care for all types of DR-TB, including rifampicin/multidrug-resistant TB (RR/MDR-TB), Pre-XDR-TB, XDR-TB. RR/MDR-TB is defined as Mycobacterium tuberculosis with resistance to rifampicin. It includes MDR-TB (resistant to both isoniazid and rifampicin) and rifampicin mono-resistant TB (susceptible to isoniazid). Pre-XDR TB is MDR-TB with resistance to any fluoroquinolone, and XDR-TB is TB resistant to rifampicin plus any fluoroquinolone and one additional group A drug, bedaquiline or linezolid.⁽⁶⁾ The eight other health facilities offer outpatient RR/MDR-TB treatment only. Initial DR-TB diagnosis is made in local health facilities across Johannesburg, and on diagnosis, patients are referred to the DR-TB treatment facility closest to their home for initiation of treatment and ongoing management. DR-TB treatment is free, and free transport is provided from local clinics to DR-TB treatment facilities. Each month, patients are expected to return to their DR-TB treatment facility to monitor their response to treatment and collect medication for the following month.

Characteristics of participants

A total of 24 participants participated in the study, including 16 DR-TB patients and 8 family members (Table 1). Table 2 provides the demographic details and characteristics of the DR-TB patients. Of the DR-TB patients, 12 were on the short regimen (9 months), and 4 were on the long regimen (18 months). The family members included 3 males and 5 females, with ages ranging from 41 years to 62 years.

Table 1

Table of participant distributions across participating sites
Facility name	SSI participants	FDG participants
Ff Facility 1	DR-TB Patients = 4 Family Members = 2	DR-TB Patients = 2 Family Members = 1
Facility 2	DR-TB Patients = 3 Family Members = 2	DR-TB Patients = 1 Family Members = 1
Facility 3acility name	DR-TB Patients = 3 Family Members = 1	DR-TB Patients = 1 Family Members = 1
Facility 4	DR-TB Patients = 3 Family Members = 2	DR-TB Patients = 2 Family Members = 1
Facility 5Fcility name	DR-TB Patients = 3 Family Members = 1	DR-TB Patients = 0 Family Members = 0

Table 2

Characteristics of the study participants with DR-TB
Study ID	Age	Gender	*Resistance Pattern	*Duration on DR- TB treatment	*Comorbidity	*Length of regimen	Treatment outcomes of DR-TB after 14 months on treatment
#P1	28	Female	RR-TB	4 months	None	Short	Cured
#P2	20	Female	MDR-TB	4 months	None	Short	Cured
#P3	29	Male	MDR-TB	5 months	None	Long	Death
#P4	30	Male	MDR-TB	4 months	None	Short	Cured
#P5	37	Female	Pre-XDR-TB	5 months	HIV	Long	Cured
#P6	46	Female	MDR-TB	4 months	HIV	Short	Cured
#P7	37	Male	MDR-TB	4 months	None	Short	Cured
#P8	19	Female	MDR-TB	5 months	None	Short	Still on treatment
#P9	35	Male	XDR-TB	5 months	None	Long	Still on treatment
#P10	39	Female	MDR-TB	4 months	HIV	Short	Cured
#P11	52	Female	MDR-TB	5 months	HIV	Short	Cured
#P13	42	Male	MDR-TB	4 months	HIV	Short	Cured
#P14	36	Male	XDR-TB	4 months	None	Long	Cured
#P15	57	Female	RR-TB	5 Month	HIV	Short	Cured
#P16	54	Female	MDR-TB	5 Month	Type 2 DM	Short	Cured
#P24	61	Male	MDR-TB	5 Month	Type 2 DM	Short	Cured

*Resistance Pattern: Type of DR-TB. *Duration of DR-TB treatment: number of months of DR-TB treatment. *Comorbidity: other medical condition(s) affecting the patient.

NB: All cured patients had their DR-TB treatment extended by at least 2–3 months to their 9-month regimen to compensate for missed treatment days).

Data collection

Semi structured interviews (SSIs) and a focus group discussion (FGD) were utilized to collect data from people with DR-TB and family members. The SSI was piloted with a former DR-TB patient who had just completed their DR-TB treatment and a family member of a DR-TB patient in the last month of DR-TB treatment, and no adjustments were made. We initially interviewed 10 DR-TB patients and 4 family members using SSIs and then continued until we reached data saturation, with 16 DR-TB patients and 8 family members. In addition, 6 DR-TB patients and 4 family members further participated in the FDGs. All those approached for either the SSIs or FGDs agreed to participate. No repeat interviews were performed. Interviews were conducted in DR-TB facilities in spaces that were private to ensure confidentiality but well ventilated. The interviews were conducted by a research assistant (TM) who has 5 years of experience working in TB and HIV programs in the public sector and with non-governmental organizations (NGOs) and who had received training from an experienced interviewer (SH) in conducting SSIs (Annexure 1). He established a relationship with each participant prior to starting the interview by explaining the goals of the interview as well as his reasons for being interested in the study. The interviews were conducted in the language preferred by the patient. Questions about the SSI were intended to help DR-TB patients and family members describe their experience with DR-TB, diagnosis and treatment. This included their experiences of how they felt when they were first informed that they had DR-TB, how they processed the information about their DR-TB diagnosis, their perception of their interaction with HCWs, the difficulties they experienced in accessing DR-TB services and taking their treatment daily and the social and socioeconomic factors that impacted their retention in care. The transcripts were not returned to the participants for comments. The FGD (Annexure 2) probed the challenges patients and family members experienced in remaining in care. To ensure that participants expressed themselves freely, the family members who participated in the FGD were not related to the DR-TB patients who participated in the FGD. FGDs were held in a hall. The door of the hall was closed to ensure confidentiality, but all windows were open to ensure adequate ventilation and prevent TB transmission. The FGDs were facilitated by a researcher with experience in conducting FGDs (SH). She has over 5 years of experience doing FDGs and has been involved in HIV- and TB-related studies for more than 15 years. She was assisted by a research assistant (TM) who provided translation when necessary. Both the SSIs and FGDs were audio recorded, and field notes were taken. The SSIs lasted between 30 and 45 minutes, and the FGDs lasted 70 minutes; the FGDs were transcribed and translated into English by the researcher (NM).

Data analysis

Transcribed data from both the SSIs and FGDs were read and reread by the researcher (NM) for theme and content, and repeating patterns and discussion (with ML) were confirmed. A list of the themes that emerged was entered into Microsoft Excel and organized into categories and subcategories. Quotes illustrating each specific theme, category and subcategory were identified. Participants did not provide feedback at this stage of the research, as they were approached to provide feedback in the next phase of the research.

Our data analysis was guided by the multidimensional adherence model developed by the WHO,⁽⁷⁾ which asserts that adherence is a result of the interplay of five sets of factors: 1) socioeconomic factors, 2) patient-related factors, 3) clinical condition-related factors, 4) therapy-related factors, and 5) healthcare system-related factors (Fig. 1). In our data analysis, we decided to replace patient-related factors with psychological factors due to having psychological factors rather than personal factors as a recurring common theme from participant interviews, and we ended up with a modified version of the multidimensional adherence model. ⁽⁷⁾

Key themes emerging regarding retention in care

A number of thematic areas emerged, with all participants (both patients and family members) reporting them as either facilitators or barriers to retention in care. Each of these themes, together with the predominant subthemes, are described in more detail below.

Theme 1: Barriers to retention in care

The barriers to retention in care were reported using the modified multidimensional framework, i.e., health system factors, socioeconomic factors, and psychological factors. Figure 2 below illustrates the barriers that emerged from the study participants

Health system-related factors identified as barriers to optimal retention in care were 1) limited information provided to patients with DR-TB and their families on DR-TB disease and its treatment; 2) patient transport difficulties; and 3) discrimination and stigma experienced by participants at health care facilities other than DR-TB facilities.

The two quotes below refer to the limited information provided to patients on DR-TB disease and its treatment:

“She (DR-TB patient) does not know much about MDR-TB, I don’t think she got good explanation about MDR-TB. I also need education about MDR-TB...” (Participant #12, 45-year-old family member)

“The nurse just told me I have MDR-TB and that they don’t treat it at the clinic. She did not explain what MDR-TB is” (Participant # 8, 19-year-old female patient with DR-TB)

One of the challenges with transport is described below:

“Some of the time, patient transport takes a long time to come and pick us up from local clinics to DR-TB facilities, and we arrive already tired at DR-TB facilities. If I had means, I would use private transport to the DR-TB facility” (Participant # 9, 35 years old male)

Although the health workers in DR-TB facilities were given positive reviews by both DR-TB patients and family members, patients experienced discrimination from health care workers at non-DR-TB facilities. The two quotes below describe the discrimination experienced:

“When my son was admitted to the hospital, I would find food next to the door or in the middle of the isolation room he was sleeping in. it is like they throw food to a dog. I am surprised by this behavior of the hospital because at the DR-TB treatment facility, they treat us with dignity...” (Participant #20, 58-year-old family member)

“I got sick while I had visited my uncle; when the nurses found that I had MDR-TB, they treated me differently and did not even examine me. I was told to wait outside the building for the ambulance.” (Participant # 4, 30-year-old male DR-TB patient)

Therapy-related factors identified as barriers to optimal retention during treatment were 1) pill burden and 2) side effects.

This study was conducted before the introduction of the 6-month bedaquiline, pretomandid, linezolid and moxifloxacin (BPaLM/BPaL) regimen, and the high number of tablets was reported as a barrier to retention in care by many DR-TB patients, particularly those with additional comorbidities. Side effects associated with the medication were also reported as a barrier to care, with some participants omitting treatment on some days to alleviate the side effects.

The quote below illustrates the negative experience of the side effects of DR-TB drugs:

“Side effects are very bad; they can make you want to stop taking the treatment.” (Participant # 14, 36-year-old male patient with DR-TB)

Socioeconomic factors were identified as barriers to optimal retention in care. Both patients and family members described the 1) financial difficulties they experienced due to DR-TB disease and treatment. Two patients described 2) having to stop working and the impact of this loss of income. A family member described that she had to reduce her work hours so that she could care for her son:

“I was self-employed as a performing artist, but MDR-TB has made it difficult to work as I get tired, and the side effects are bad, and I have lost income for the past 6 months.” (Participant #7, 38-year-old male DR-TB patient)

“When my son got sick with DR-TB, my wife had to take care of him, so she reduced her working hours and on top of that we spend money on transport to DR-TB facility” (Participant # 23, 58-year-old family member)

Even though there was freely available patient transport from the clinics to the DR-TB facilities, some patients 3) struggled to walk to the local clinic to connect to transport to the DR-TB facility, and 4) a lack of transport money from home to the local clinic or directly to the DR-TB facility resulted in DR-TB patients missing their appointments and receiving repeat medication.

Due to financial difficulties, 5) some households experienced a shortage of food. A family member and patient described why the lack of food was a barrier to taking medication:

“When we have ran out of food, he (DR-TB patient) refuses to take medication fearing vomiting and dizziness, so he takes the pills only when I get him something to eat” (Participant # 22, 53 yeas old family member)

“I once took the pills on an empty stomach and got very sick the whole day, so I skipped the medication when there was no food at home. I struggle with (lack of) food at times, and that makes it difficult for me to stay on treatment.” (Participant #1, a 28-year-old female patient with DR-TB)

Psychological factors identified as barriers to optimal retention in care included a change in behaviour, feeling lonely and unsupported and fear and anxiety.

“I lost confidence, and I feel sad since I have been on MDR-TB treatment. I don’t prefer going out of the yard” (Participant # 4, 30-year-old male DR-TB patient).

Family members described a change in the behaviour of their relatives with DR-TB, with family members bearing the brunt of the emotions.

“He had emotional outbursts and developed anger towards us in the household…” (Participant # 21, 44-year-old family member)

“I give her all the love and support, but she sometimes doesn’t talk to me without any explanations. Therefore, I have learned to be patient with her (Participant #17, 61-year-old family member of a DR-TB patient).

Theme 2: Facilitators of retention in care

Health system-related factors: Positive interactions with health services facilitated retention in care. These included 1) positive interactions with HCWs at DR-TB sites and 2) the provision of patient transport.

The three quotes below are examples of a positive interaction with HCWs:

“This (DR-TB facility) is like my second home. They are friendly here; they welcome you with hot tea. The doctors are now my friends.” (Participant # 6, 46-year-old male DR-TB patient)

“Love and kindness from the doctors and nurses at the MDR-TB treatment facility makes me adhere and not disappoint them.” (Participant # 24, a 61-year-old male DR-TB patient)

“Nurses and doctors are very supportive; we are blessed to have them. They used to call us at the beginning of the treatment to check his (patient) well-being and started DR-TB prevention treatment for the children…” (Participant # 19, 54-year-old family member).

Even though patients had faced challenges with patient transport from local clinics to DR-TB facilities at times, participants believed that the free transport provided to them was an important service that facilitated their retention in care.

The socioeconomic factors that were associated with facilitating retention in care were 1) family support; 2) financial support or being financially independent; 3) the availability of food in the household or the supply of porridge by DR-TB facilities; and 4) receiving a disability grant (DG) from the South African Social Security Agency (SASSA):

This quote illustrates the value of family support:

“My family has been there for me providing support, from being diagnosed at the local clinic to the first day at the DR-TB treatment facility, nursing me, providing food and money.” (Participant #3, 29-year-old male DR-TB patient)

The value of a temporary government-funded disability grant (DG) to alleviate financial difficulties is captured in the quote below:

“I received a temporary disability grant for 6 months, and my parents had relief; I stopped worrying about going back to work very soon.” (Participant # 9, 35-year-old male DR-TB patient)

Psychological factors associated with facilitating retention in care were self-motivation, and DR-TB patients spoke about how the motivation to live and the will to beat DR-TB carried them through difficult times.

Theme 3: Suggestions to improve retention in care

Another key theme to emerge was suggestions regarding how retention in care could be improved. Therapy-related suggestions: Several participants described how 1) the provision of drugs with fewer side effects, 2) reducing pill burden, and 3) managing and treating side effects could facilitate retention in care (see Table 3). The other suggestions that emerged were health system factors, socioeconomic and psychological support and addressing community-level stigma and discrimination.

Health system-related factors suggested to improve retention in care included the following: 1) improved DR-TB counselling and education to families and DR-TB patients at the time of diagnosis; 2) improvements to the patient transport booking system; 3) improved communication by HCWs at DR-TB facilities regarding patient response to treatment; 4) education of HCWs in other facilities not to discriminate or stigmatize DR-TB patients; and 5) increased education and awareness of DR-TB disease and management in the general population (see Table 3). The quote below illustrates the need for more information on DR-TB disease and treatment:

“There needs to be counselling sessions and education to us family members about DR-TB and its treatment, duration of treatment and how to support a DR-TB patient” (Participant # 18, 61-year-old family member)

The quote below describes the need for more information on DR-TB:

“More education about DR-TB at the time of diagnosis and support for our patients and our relatives can help us cope better with DR-TB” (Participant #11, 52-year-old female DR-TB patient)

Socioeconomic strategies suggested to improve retention in this study included the following: 1) assisting DR-TB patients with food parcels for the duration of DR-TB treatment; 2) increasing the provision of packs of porridge by DR-TB facilities; 3) assisting in applying for and receiving temporary DGs from SASSA; and 4) assisting with accessing the Unemployment Insurance Fund (UIF) for employed DR-TB patients (see Table 3).

“Food shortages at home make it difficult to adhere to treatment; if the government can assist us with monthly food parcels until we complete the treatment, that would make us cope better with DR-TB treatment” (Participant #10, 39-year-old female DR-TB patient)

“The porridge provided by DR-TB facilities is very helpful; however, it only lasts for a week, I hope they can provide more rations that can last for a month” (Participant #19, 54-year-old family member)

“I just got to hear now in this discussion about the availability of a disability grant for very sick patients. It would be helpful if we applied for the grant at the beginning of treatment” (participant # 22, 53-year-old family member).

Psychological support strategies suggested included the following: 1) the provision of psychological support through the creation of support groups for DR-TB patients and families, as this would facilitate retention in care, as DR-TB patients and family members could come together to strengthen their resilience and discuss challenges and how to overcome these challenges; 2) home visits for treatment support and emotional support by community health workers (CHWs); 3) having a designated person who could partner with them throughout the DR-TB treatment journey and support them in addressing challenges; and 4) helping families of DR-TB patients care for a person with DR-TB (see Table 3).

Table 3

Table of suggestions by study participants on improving retention in DR-TB treatment.
Therapy Related Suggestions	Health System Related	Socio-Economic Strategies	Psychological Support
• Provision of drugs with lesser side effects. • Reducing pill burden. • Management and treatment of side effects.	• DR-TB counselling and education to families and DR-TB patients on diagnosis of DR-TB. • Improvements to the patient transport booking system. • Improved communication by HCW at facilities to DR-TB patients about treatment progress. • Educating HCW in other facilities not to discriminate or stigmatize DR-TB patients. • Education and awareness of DR-TB to the general population.	• Assisting DR-TB patients with food parcels for the duration of DR-TB treatment. • Providing more packs of porridge supplies by DR-TB facilities. • Assistance in applying for and receiving temporary DG from SASSA. • Assistance with accessing the (UIF) for employed DR-TB patients.•	• Provision of psychological support through the creation of support groups for DR-TB patients and their families. • Home visits for treatment support and emotional support. • Have a designated person who will partner with the patient throughout the DR-TB treatment journey and support them in addressing challenges. • Guiding families of DR-TB patients on how to care for a patient with DR-TB.

In this qualitative study conducted in a metropolitan area in sub-Saharan Africa, people living with DR-TB who had periods of suboptimal engagement in care and their family members were able to identify multiple barriers to remaining in care. The challenges faced by DR-TB patients included health system, socioeconomic, psychological and DR-TB treatment-related factors. As most of the participants in this study had limited financial resources, socioeconomic factors were most often referred to as reasons for suboptimal adherence, as money was needed for taxi fares to access health facilities. In addition, the treatment itself, the high pill burden and side effects of the medicine also contributed to poor adherence. The challenges to retention in care that have been documented previously include transport challenges ^(4,12,13), limited knowledge about DR-TB, and the side effects of the drugs included in DR-TB regimens. ^(14-16)

Recently, there have been a number of biomedical advances in the diagnosis, management and treatment of DR-TB. With advances in diagnostics, patients can start effective treatment sooner, and at the time of this study, the duration of treatment decreased from 24 months to 9 months for those with minimal disease and no prior exposure to fluroquinolones. However, our findings highlight the limitations of focusing only on biomedical interventions for DR-TB, as a number of the participants in our study, despite being on the short regimen, were not able to remain engaged in care for the duration of treatment, and the need for socioeconomic and psychological support for patients with DR-TB and their families in a low-income setting where resources are limited was reported by most patients.

Stigma in health facilities other than DR-TB treatment centres and local clinics was mentioned as a barrier to optimal retention. South Africa has high burdens of TB and HIV. With the extensive roll-out of ART, stigma in relation to HIV has reduced to some extent,⁽⁸⁾ but there is still considerable stigma associated with DR-TB, which, together with discrimination, continues to contribute to suboptimal retention in care. ^14,16,18,19).

In our study, DR-TB patients did not experience stigma or discrimination at DR-TB treatment facilities but did at facilities that did not treat DR-TB. Several DR-TB study participants experienced food security challenges, which resulted in missing doses of DR-TB treatment. Poverty is one of the most important social determinants of TB, and in addition to being a poverty-related illness, an episode of TB drives people infected and their household further into poverty.⁽⁹⁾ In a study in the KwaZulu-Natal province of South Africa, Tomita et al.⁽⁴⁾ reported that the proportion of individuals with DR-TB who suffered from severe food shortages was greater than that of the general population (14.9% vs 4.8%). After controlling for other socioeconomic factors, they also found that there was an association between major depressive episodes and household food insecurity in these individuals. The psychological issues commonly faced by DR-TB patients in this study were anxiety about DR-TB diagnosis and fear and feeling lonely in the DR-TB treatment journey. A systemic review of psychological issues faced by DR-TB patients revealed that DR-TB patients face various psychological issues, including feelings of hopelessness, fear, low self-esteem and isolation.⁽⁵⁾

The use of DR-TB treatment has resulted in families or DR-TB patients facing financial difficulties. The costs incurred by DR-TB patients and their families during DR-TB treatment have been reported to be direct medical costs (e.g., drug costs), direct nonmedical costs (e.g., transportation to hospital), or indirect costs (e.g., income loss).⁽¹⁰⁾In South Africa, DR-TB treatment is freely available, and our participants incurred direct nonmedical and indirect costs. A study in South Africa on patient costs associated with receiving DR-TB treatment revealed that receiving DR-TB treatment results in patients bearing a significant financial burden and suffering high out-of-pocket expenses (14-32% of wages). ⁽¹¹⁾

It seems that to retain DR-TB patients on treatment and reduce LTFU, there must be some form of material support for DR-TB patients. A systemic literature review by Wen et al. ⁽¹²⁾ revealed that social support interventions helped patients with DR-TB in various ways. Some studies have reported that providing support by addressing psychosocial challenges can enable adherence and successful treatment outcomes in patients at high risk of poor default. ^{(13, 14)} Other studies have shown that nutritional support enables weight gain in the first two months of treatment, reducing mortality,⁽¹⁵⁾ and that financial support reduces out-of-pocket expenses and the financial burden for DR-TB patients.⁽¹⁶⁾ Social support was also reported to improve the sense of belonging and enhance relationships between patients, CHWs and health workers. ^{(24, 25, 30, 34, 35)}. Decreased mortality due to social interventions has been reported in other studies ^{(13, 15, 17)}.

Even though the suggestions , by DR-TB patients and their families, in this study are relevant to a limited local context, they are similar to those recommended by the WHO, which identified four subtypes of social support interventions for DR-TB patients:⁽¹⁸⁾ informational, emotional, companionship and material support. These four types of social support enable DR-TB patients to cope with the negative effects of DR-TB disease and its treatment.⁽¹⁹⁾

Limitations

This was a qualitative study, and due to the small number of participants, the findings cannot be generalized to DR-TB patients in other parts of South Africa. The study participants were mostly from poor socioeconomic backgrounds, and the study could have missed barriers experienced by DR-TB patients from different socioeconomic backgrounds.

This study highlights the need for socioeconomic and psychological support for DR-TB patients from low-income settings if we are to realize the benefits of recent advances in biomedical interventions for DR-TB. The findings of this study will be utilized in discussions with relevant stakeholders in Johannesburg, South Africa, to develop a socioeconomic and psychological support package to facilitate retention in care of DR-TB patients in Johannesburg, South Africa.

DR-TB: Drug-resistant tuberculosis

WHO: World Health Organization

HCWs: Health care workers

SSIs: Semi structure Interviews

FGDs: Focus group discussions

LTFU: Loss to follow-up

GP: Gauteng Province

Pre-XDR TB: Pre extensively drug resistant TB

XDR-TB: Extensively drug resistant TB

RR-TB: Rifampicin resistant TB

MDR-TB: Multi drug resistant TB

NGOs: Non-governmental organizations

BPaLM/BPaL: bedaquiline, pretomandid, linezolid and moxifloxacin

DG: Disability Grant

SASSA: South African Social Security Agency

UIF: Unemployment Insurance Fund

CHWs: Community health workers

Ethical approval and consent to participate:

Ethical approval was granted by the Biomedical Research Ethics Committee (BREC), BREC/00004973/2022, of the University of KwaZulu Natal, and permission to conduct the study was also obtained from the Gauteng Department of Health. Consent to participate in the study was received from the participants. The consent included participation in the SSI or FGD and digital audio recording, the voluntary terms of involvement in the study and the assurance of confidentiality and anonymity. Consent for publication was also received from the study participants. Patient anonymity was maintained by identifying each patient using a unique identification number

Consent for publication:

A signed consent for publication was also received from the study participants.

Availability of data and materials:

The data generated and analysed during the study are available from the corresponding author on request.

Competing interests:

The authors declare that they have no competing interests.

Funding:

This study was supported by the South African Medical Research Council (SAMRC). The funding was utilized for data collection, data analysis, and data interpretation.

Authors contributions

Ndiviwe Mphothulo: The lead author, and PhD candidate at the University of KwaZulu Natal was responsible for writing up the manuscript and thesis as part of the examination for the PhD, with the guidance of supervisors and co-authors.

Sindisiwe Hlangu: Responsible for training the research assistant, reviewing the study proposal section of data collection, reviewing parts of write up of data collection and commenting on data analysis of the study.

Jennifer Furin: Commented on and edited the draft versions of manuscript. Helped in writing up the data analysis section.

Mosa Moshabela: PhD co-supervisor, was part of conceptualization of the study and guiding on the write up of the manuscript.

Marian Loveday: Main PhD supervisor, was part of the conceptualization of the study and guided data collection and analysis. Helped in editing all sections of the manuscript

Acknowledgments:

We would like to acknowledge the Johannesburg Health District for cooperation; helping us with access to study participants and helping us with statistics and data of DR-TB patients. The research assistant, Mr. Thomas Monyepi, for his hard work in data collection and language interpretation, DR-TB patients, and their family members for participating in the study. We would like to thank Ms. Queen Hlongwane for drafting the tables and graphics.

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No competing interests reported.

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“It is like they throw food to a dog”: a qualitative exploration of barriers and facilitators to retention in care among people with history of being lost to follow up from drug-resistant tuberculosis in Johannesburg, South Africa.

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