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Published in final edited form as: AIDS Care. 2020 Aug 28;33(11):1436–1444. doi: 10.1080/09540121.2020.1808567

Mobility and Structural Barriers in Rural South Africa Contribute to Loss to Follow up from HIV Care

Alisse Hannaford 1, Anthony P Moll 2,3, Thuthukani Madondo 3, Bulelani Khoza 3, Sheela V Shenoi 4
PMCID: PMC8043244  NIHMSID: NIHMS1620947  PMID: 32856470

Abstract

Retention in HIV care is crucial to sustaining viral load suppression, and reducing HIV transmission, yet loss to follow-up (LTFU) in South Africa remains substantial. We conducted a mixed methods evaluation in rural South Africa to characterize ART disengagement in neglected rural settings. Using convenience sampling, surveys were completed by 102 PLWH who disengaged from ART (minimum 90 days) and subsequently resumed care. A subset (n=60) completed individual in-depth interviews. Median duration of ART discontinuation was 9 months (IQR 4–22). Participants had HIV knowledge gaps regarding HIV transmission and increased risk of tuberculosis. The major contributors to LTFU were mobility and structural barriers. PLWH traveled for an urgent family need or employment, and were not able to collect ART while away. Structural barriers included inability to access care, due to lack of financial resources to reach distant clinics. Other factors included dissatisfaction with care, pill fatigue, lack of social support, and stigma. Illness was the major precipitant of returning to care. Mobility and structural barriers impede longitudinal HIV care in rural South Africa, threatening the gains made from expanded ART access. To achieve 90-90-90, future interventions, including emphasis on patient centered care, must address barriers relevant to rural settings.

Keywords: antiretroviral therapy, re-engagement, rural, mobility, structural barriers, patient centered care

Background

In 2018, an estimated 7.7 million South Africans were living with HIV, with suboptimal outcomes (UNAIDS, 2018). Though South Africa has expanded access resulting in the largest global ART programme, the maturing HIV epidemic brings challenges with retention in care(Bassett et al., 2010; Bassett et al., 2009; Gardner, McLees, Steiner, Del Rio, & Burman, 2011; Geng et al., 2010; Kranzer, Govindasamy, Ford, Johnston, & Lawn, 2012; Kranzer, Zeinecker, et al., 2010; Rosen & Fox, 2011; Shenoi et al., 2017; South African Department of Health, 2007, 2013; UNAIDS, 2018; World Health Organization, 2013).

Retention is critical to sustaining virologic suppression, improving outcomes and reducing transmission, yet disengagement(Anand, Springer, Copenhaver, & Altice, 2010; Arnesen, Moll, & Shenoi, 2017; Bartlett et al., 2006; Hammond & Harry, 2008; Palella et al., 1998; Prentiss, Power, Balmas, Tzuang, & Israelski, 2004; Thompson et al., 2012) threatens individual outcomes and increases transmission, jeopardizing the progress from ART expansion. Despite this, barriers to adherence and retention facilitate loss to follow up (LTFU). Failure to achieve viral load suppression occurs in 10–20% in South Africa.(Council, 2018) Furthermore, rates of LTFU are 10–20%,(Arnesen et al., 2017; Dalal et al., 2008; Fox M et al., 2016; Fox & Rosen, 2010; Kaplan et al., 2017) and are attributed to transportation costs, missing work or school, wait times, insufficient time with providers, stigma, confidentiality concerns, and treatment fatigue(Rosen & Fox, 2011; Ware et al., 2013), though data from rural settings is sparse. Limited data ascribes reengagement to health concerns, pressure from family members, and engagement with clinic staff.(Cunningham et al., 2014; HB, 2015; Kranzer, Lewis, et al., 2010; Layer EH, 2014; Ndiaye et al., 2009) Here, we assess LTFU and re-engagement specific to rural settings, to inform strategies targeting disengagement.

Methods

Setting

Church of Scotland Hospital (COSH) is a 350-bed government hospital in rural KwaZulu-Natal province. Nearly 200,00 traditional Zulu people live in one of the poorest regions nationwide, (Massyn N et al., 2016) characterized by high unemployment (50%), lack of education (41%), lack of access to running water (96%), and high HIV prevalence (30% of antenatal patients) (Naomi Massyn, Ashnie Padarath, Nazia Peer, & Day, 2017; Statistics South Africa, 2017). All PLWH are ART eligible, irrespective of CD4 count(Meintjes et al., 2015) and collect ART monthly; once stable for 12 months, patients can obtain a two-month supply.

Design

Potential participants were referred by COSH doctors. Per local protocol, those LTFU must be evaluated at COSH prior to restarting ART. Eligible participants were age ≥18, not taking previous ART for ≥90 days, and excluded if too sick to walk to a private room or provide consent.

Data collection and analysis

After written informed consent, questionnaires and interviews were conducted in Zulu, eliciting participants’ HIV knowledge, stigma, barriers to care, reasons for disengaging and returning to care. Survey items are listed in Tables 1–4. Stigma items were adapted from a validated scale.(Somma et al., 2008) Qualitative assessment (Tables 5–6) was subsequently added after identifying the need for nuanced responses (Creswell, 2014). Responses were iteratively grouped into themes by two authors using grounded theory framework(Bradley, Curry, & Devers, 2007). A codebook was developed based on theory-driven themes. Emerging inductive themes were identified and used to iteratively modify the interview guide and initial codebook. Interviews continued until thematic saturation was achieved.

Table 1:

Characteristics of respondents previously disengaged from antiretroviral therapy returning to care in rural South Africa (n=102)

Characteristic n (%)
Female Gender 54 (53)
Marital status (n=82)
 Single
 Partner
 Married
 Widowed
37 (45)
27 (33)
13 (16)
5 (6)
Median Age (years) 36 (IQR 28–44)
Nearest clinic <30 min away 51 (50)
Travel to clinic using Taxi 74 (73)
Median clinic travel cost (one way) R14 (IQR R10–20); (approx. $1.17 USD)
Receive Monthly grant 85 (83)
Not Employed 84 (82)
Completed Secondary School 58 (57)
Electricity 69 (68)
Pit latrine Toilet 99 (97)
Median time defaulted ART 9 months (IQR 4–22mo)
>1 year on ART before disengaging 60 (63)
No prior TB treatment 56 (55)
No prior household member on TB treatment 77 (79)
No prior IPT 71 (74)
Know other people with HIV 80 (78)
Know other people on ART 78 (81)
Disclosed HIV status to a partner (n=84) 69 (82)
Partner living with HIV (n=70) 56 (80)
Children living with HIV 21 (21)
No adverse effects from HIV treatment 76 (77)
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Table 4:

Stigma amongst people living with HIV who previously were lost to follow up (n=102)

Response n (%)
I feel I may die from HIV 55 (54)
I have to stay healthy to take care of my family 101 (99)
I am embarrassed that I have HIV 40 (39)
I would not be afraid to deal with doctors and clinic visits 95 (93)
I can get to the clinic for the refill every month 96 (94)
Traveling to the clinic is too expensive (n=61) 11 (18)
My fear of side effects would prevent me from taking the medications 26 (26)
Life is so busy, I do not have time for medicine 13 (13)
Clinic appointments are more trouble than they are worth 25 (25)
My family would support me taking ART 92 (90)
Others would think better of me if I took ART 75 (74)
I have told someone that I have HIV 77 (74)
I could share information to others about why I’m taking medicine for HIV 89 (87)
I do not like to go to the clinic because the clinic staff treats me badly (n=45) 4 (10)
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Table 5:

Reasons for disengaging from HIV care among people living with HIV in rural South Africa

Mobility • “I went to look for a job in Durban, and I forgot to ask for the transfer letter from the clinic. I did not find a job and then did not have money to come back to the clinic.”
• “I had not fully accepted my status. I worked far from home and had no money to come back for my appointments. I tried to get a transfer but it took time and I lost my job during that time making it more difficult.”
• “I work for a contract company and my working days did not allow me to travel and get my ART. On the days I was off I had no money to come.”
• “I worked in Joburg, …. I lost my job and had no financial support. I had however requested a transfer but I did not get one at the clinic to be able to get my pills in Joburg.”
• “I was working away from home and I requested the caregiver to get my pills for me. The nurses refused to give her my treatment. My family is poor and I have 4 children. The money I had went into getting food for my children. I could not travel to the clinic. I got frustrated with the nurses at clinic and stopped going completely because they refused to understand the situation.”
• “I had a family emergency and I had to go to Durban. My grandmother was raped and I went to go look after her. I ended up staying 4 months there and I did not carry my blue book.”
Lack of money to come to the clinic • “I have no work, not even enough for food and I had no money to go to the clinic, so taking my medication was too much for me.”
• “I had no transport money to go and fetch my medicine at the clinic, the person who supported me financially passed away.”
Lack of social support • I was not treated well in Joburg by my son’s father. I ended up having no support or a place to stay.
• When I found out about my HIV status I told my husband and he was in denial about the matter and said I should not take ARVs. I did not take them because he was angry when I did. I tried to hide them from him but it was difficult because we live together.
HIV Stigma • “I was still in denial and afraid to be seen going to clinic to take ARV’s.”
• “I was scared to go to the clinic because I might come across people who know me. I was ashamed of having HIV.”
• “I got a job and I was afraid to tell my manager that I’m taking ARVs. I was scared of losing my job.”
• “I was afraid that my family members would know that I’m HIV-positive when they see me taking the medication.”
• “When I am at school, the other kids have a habit of opening my backpack and they see my blue book and sometimes my pills and they make fun of me. I then felt embarrassed and did not bring my blue book to my [clinic] appointment and could not collect my pills. The clinic is closed during the weekends so I cannot collect them on a day that I do not have school. I stopped collecting them because the other kids know the ARV container. I felt embarrassed.”
• “My husband said he tested negative but refused to show me the results. When I insisted on seeing the results he said he tore them up. Our child fell ill and was tested again in Joburg and when he saw the results for our child (positive) he agreed for the child to take them but not me.”
Adverse effects of medication • “I felt very sick and I also had bad dreams.”
• “HIV medicines made me very hungry, and I did not have money to buy to food.”
Did not want to take medication anymore • “I just got tired of taking my medication and stopped collecting it since last year.”
• “I have been taking ARVs for far too long so I thought taking a break on my medication. I was busy sometimes so I would forget taking my pills. When I feel depressed I don’t feel like doing anything even drinking my medicine.”
Participant did not feel sick anymore • “I felt that I was not sick anymore, therefore I saw no need to continue with medication.”
Other • “I was confused because my wife tested negative several times and we don’t condomise every time we have sex so I didn’t know if I was positive.”
• “I was incarcerated.”
• “I was addicted to alcohol. I felt it was not important to take my medication.”
• “I started using other traditional medicines that I was told they can cure HIV completely.”
• “I cannot see properly and find it hard to travel to the clinic. I usually ask neighbors to get the medication for me if they go to the clinic. At times there is no one going or they forget.”
• “I was writing my grade 12 exams and the mobile clinic only comes on Tuesdays.”
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Table 6:

Reasons for returning to HIV care among people living with HIV in rural South Africa

Patient became severely ill • “I felt weak and came to the hospital, not the clinic. The doctor then re-initiated me after I told him I stopped taking my ART.”
• “I became very sick, so went to the clinic and they told me that I will not be okay anytime soon because I was not taking my treatment anymore.”
To take responsibility for themselves or children • “I realized that this is my life that I am not taking care of, I started to be sick again and I thought I was going to die and leave my children.”
• “I realized that defaulting on the ARV treatment was a huge mistake, most of the time I felt sick. This was why I started my treatment again.”
Previous barriers resolved • “I found a job and I was able to provide food for myself.”
• “My job is finished, so I wanted to restart my medication before getting sick.”
To avoid getting sick in the future • “My family told me that it is important to take my medicine daily to avoid getting sick.”
Clinic Staff convinced patient to re-initiate • “The sister in charge of the clinic reached out to her when she saw she was not coming to clinic. I explained why I hadn’t been coming. The clinic now lets me leave my blue book at the clinic and I can put her pills in a plastic bag so they do not make the noise that they make in the pill bottle.”
Accepted HIV diagnosis • “It because I am now ready and have admitted the situation.”
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Results

Among 102 respondents, median age was 36 (IQR 28–44), 47% were male, median ART discontinuation was 9 months (IQR4–22), and 83% received a government grant. Approximately 80% knew others taking ART, reported a partner living with HIV, had disclosed their status, and denied ART adverse effects (Table 1). Participants had overall high HIV knowledge, though gaps existed regarding transmission. Two-thirds and one-third were unaware that ART prevents transmission to sexual partners and that HIV increases tuberculosis risk, respectively. The majority (75%) first sought care at their local clinic, though 63% and 25% also saw private doctors and traditional healers, respectively (Table 3). Clinics were regarded as distant, too expensive to reach, with extensive wait times; this was strongly substantiated in the qualitative data (Table 5). Simultaneously, respondents were (Table 4) comfortable with doctors and clinic visits (93%), affirmed ability to obtain refills (94%), and not concerned about side effects (74%).

Table 3:

Healthcare seeking behaviors among people living with HIV who previously disengaged from antiretroviral therapy (n=102)

Health care options and preferences n (%)
All sources of care (n=102) Clinic 99 (97)
Hospital 95 (93)
Private doctor 65 (63)
Relative 41(40)
Pharmacist 37 (36)
Traditional Healer 26 (25)
First point of care preference (n=81) Clinic 61 (75)
Traditional healer 9 (11)
Relative 6 (7)
Hospital 3 (4)
Other 2 (2)
Second point of care preference (n=81) Hospital 32 (40)
Clinic 23 (28)
Relative 8 (10)
Pharmacist 7 (9)
Other 11 (14)
Reasons to not seek care at the clinic (n=45) Clinic is too expensive 11 (24)
Clinic is too far away 10 (22)
Clinic waits are too long 9 (20)
Seek care elsewhere 9 (20)
Cannot miss work 9 (20)
I only go when I am very sick 7 (16)
Too many responsibilities 4 (9)
Clinic staff are rude 4 (9)
I don’t want to be hospitalized 4 (9)
I am treated badly at the clinic 4 (9)
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Many participants endorsed embarrassment from having, and worried (Table 4, 5) they will die from, HIV,

“I was scared to go to the clinic because I might come across people who know me. I was ashamed of having HIV.”

However, while 25% had never disclosed their diagnosis to anyone, 95% were not concerned about a household member learning their status. Respondents (99%) wanted to be healthy to take care of their families and had family supporting their ART, however were worried about their employers not being supportive.

“I got a job and I was afraid to tell my manager that I’m taking ARVs. I was scared of losing my job.”

Most (74%) felt that others would think better of them if they took ART.

Mobility and financial challenges accessing clinics were the major identified themes contributing to disengagement (Table 5, 6). Participants reported moving without arranging a formal transfer of care, often for an urgent family need or employment, and perceived barriers to transferring care.

“…My family is poor and I have 4 children…I could not travel to the clinic. I got frustrated with the nurses at clinic and stopped going completely because they refused to understand the situation.”

Participants repeatedly reported a lack of financial resources to access distant clinics.

“I worked far from home and had no money to come back for my appointments.”

Other barriers included lack of social support, medication adverse effects, pill fatigue, alcohol use, traditional medicine use and incarceration.

“When I found out about my HIV status I told my husband and he was in denial about the matter and said I should not take ARVs.”

“I just got tired of taking my medication and stopped collecting it since last year.”

The most common reason for returning to care (Table 6) was severe illness, primarily TB, and participants reported subsequently reinitiating ART.

“I became very sick, so went to the clinic and they told me that I will not be okay anytime soon because I was not taking my treatment anymore.”

Respondents also wanted to take responsibility for themselves or their children, avoid illness, or had finally accepted their HIV diagnosis.

“I realized that this is my life that I am not taking care of, I started to be sick again and I thought I was going to die and leave my children.”

Some re-engaged because clinic staff convinced them to return; some returned because the previous barriers had resolved.

“The sister in charge of the clinic reached out to me when she saw I was not coming to clinic. I explained why I hadn’t been coming. The clinic now lets me leave my blue book at the clinic and I can put my pills in a plastic bag so they do not make the noise that they make in the pill bottle.”

Discussion

We present a quantitative and narrative evaluation of PLWH in rural KwaZulu-Natal who had previously disengaged and then returned to care, to obtain insight on barriers and facilitators of longitudinal HIV care in rural settings. Major contributors to disengagement were mobility and structural barriers to accessing care, despite high motivation to continue ART.

Moving away, even temporarily, resulted in challenges maintaining ART. Mobility, often for income-generating opportunities, education, and family illnesses,(Katharine Hall, Amina Ebrahim, Ariane De Lannoy, & Makiwane, 2015; Ware et al., 2013) is a barrier to successful long-term retention,(Clouse et al., 2018; Clouse, Vermund, et al., 2017; Hoddinott et al., 2018) but remains underappreciated in rural populations. Participants reported perceived or actual difficulties obtaining a formal transfer letter, without which, they could not access ART. Not unexpectedly, those formally transferring care are more likely to reengage and have better outcomes than those who are LTFU(Hickey et al., 2016). Furthermore, mobile populations may demonstrate greater risk behaviors(Camlin, Akullian, et al., 2018; Camlin, Cassels, & Seeley, 2018). Patients should be educated, regularly, about how to transfer care should the need arise.

Current systems are insufficient for providers to reconcile ART history if a patient presents without records(Camlin, Akullian, et al., 2018; Hoddinott et al., 2018; Myer et al., 2017). Networked electronic records across health facilities would enable medication collection while away from their primary clinic(Clouse, Phillips, & Myer, 2017; Clouse, Vermund, et al., 2017). mHealth strategies have demonstrated effectiveness in improving chronic disease outcomes(Drake et al., 2017; Hirsch-Moverman et al., 2017; Nachega et al., 2016), and if widely implementable, may improve retention in rural areas.

Competing demands and economic concerns took precedence over appointments(Ware et al., 2013), exacerbated by dissatisfaction with traditional clinic-based care. Successful longitudinal ART requires adaptation of care models(Labhardt et al., 2018; Plazy et al., 2017). Expanding mobile clinics, dispensing sites, multi-month prescriptions, and community-based ART delivery are patient-centered strategies that could decrease the economic and time burden on PLWH and ease HCW workload.

We observed HIV-related stigma in both quantitative (Table 4) and qualitative (Table 5) responses. Though most had disclosed to a partner, PLWH were embarrassed, avoided community members or employers learning their status, and avoided being seen at the HIV clinic. At our public hospital, ART prescription mandates a different color clinic book and medication pickup from a distinct pharmacy than HIV-negative patients, making PLWH identifiable. Integration of HIV care into primary care services, underway in South Africa, will help address this, in addition to mobile clinics, HCW training, and community care models(Jones & Cameron, 2017; Loeliger, Niccolai, Mtungwa, Moll, & Shenoi, 2016; Long et al., 2016).

Despite knowing others taking ART, disclosing their status, and family support, most reported lacking social support. This may reflect a distinction between support from trusted family members vs. stigma in the general community and requires further investigation.(Rueda S, 2016) Previously, ART initiation required a patient-selected treatment supporter, but is now not compulsory. Emphasis on patient-centered care, including resurrecting the requirement for a treatment supporter(Duwell et al., 2013), introducing community-wide stigma interventions, expanding support groups and adherence clubs(Dageid, 2014; Grimsrud, Lesosky, Kalombo, Bekker, & Myer, 2016; James et al., 2018), and ensuring dedicated staff for adherence support are evidence-based strategies to mitigate stressors associated with longitudinal HIV care.(Hu et al., 2018)

Surprisingly, we identified gap in knowledge about HIV treatment as prevention. As the motivation to protect partners may influence adherence and retention in care, strategies to address this critical gap include enhanced health care worker and counselor training as well as public health media campaigns.(Bavinton et al., 2016; Carter et al., 2015; Mooney et al., 2017)

Disengaged patients often resurface with advanced disease, resulting in high morbidity and mortality(Brinkhof, Pujades-Rodriguez, & Egger, 2009; Lahuerta et al., 2014; McNairy, Abrams, Rabkin, & El-Sadr, 2017; Wilkinson, Skordis-Worrall, Ajose, & Ford, 2015). Severe illness, particularly TB, was the most common reason for returning to care. Ongoing education about the consequences of discontinuing ART, possibly from peer educators, and expanding TB preventive therapy implementation, may be helpful.

We recognize several limitations. Participants represent a convenience sample of ambulatory patients resuming care, and results may not be generalizable to all LTFU. Additionally, lack of an established scale may undermine the HIV knowledge assessment.

Conclusion

These findings highlight challenges faced by PLWH in rural resource-limited settings and inform potential interventions to facilitate longitudinal, patient-centered HIV care. Strategies include system-level facilitated transfer of care, multi-month ART prescriptions, expanding medication distribution sites, including community-based dispensing, integrating ART into primary care, and facilitating linkage to remote facilities when away from their home clinic. Lastly, HCW should be capacitated to identify patients’ barriers to chronic care and intervene on those at high risk of LTFU.(Arnesen et al., 2017)

Table 2:

HIV knowledge among people living with HIV who previously disengaged from antiretroviral therapy (n=102)

Question No
N (%)		 Yes
N (%)		 Unknown
N (%)
HIV knowledge questions (n=15)
What causes HIV?
  A virus 4 (4) 94 (92) 4 (4)
  Witchcraft 96 (94) 4 (4) 2 (2)
  Drinking alcohol 93 (91) 5 (5) 4 (4)
  Smoking cigarettes 95 (93) 4 (4) 3 (3)
  Being poor 95 (93) 5 (5) 2 (2)
  Punishment from God 92 (90) 6 (6) 4 (4)
  Punishment from the ancestors 96 (94) 3 (3) 3 (3)
How is HIV spread?
  Unprotected sex 0 (0) 102 (100) 0 (0)
  Sharing clothes 90 (88) 5 (5) 7 (7)
  Mother during childbirth 10 (10) 76 (75) 16 (16)
  Breastmilk 9 (9) 81 (79) 12 (12)
  Eating food prepared by a person with HIV 93 (91) 4 (4) 5 (5)
  Getting pricked by needle that has HIV infected blood 7 (7) 92 (90) 3 (3)
HIV treatment can prevent me from giving HIV to my partner 51 (50) 34 (33) 17 (17)
Using condoms can prevent HIV spread 1 (1) 97 (95) 4 (4)
HIV is treatable 11 (11) 85 (83) 6 (6)
HIV is curable 76 (75) 11 (11) 14 (14)
ART reduces the risk of getting sick from TB 18 (18) 49 (48) 35 (34)
If you have HIV, there is a high risk of getting TB 5 (5) 71 (70) 26 (25)
If you take ART you will not get sick with TB for some time 18 (18) 27 (26) 57 (56)
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Correct answers noted in bolded font.

Acknowledgements

The authors wish to thank the staff at Church of Scotland Hospital and Philanjalo NGO for their dedication to the Msinga community.

Support:

The study was funded by Doris Duke Clinical Research Fellowship (AH, #2016178), NIAID (SS, #K23AI089260), Doris Duke/YCCI (SS, #2015216), Patterson Foundation (#14–001927), Irene Diamond Foundation (#2006078).

Footnotes

This data presented in this manuscript has not been presented at conferences.

Availability of data and material

The datasets generated and analysed during the current study are available in the Mendeley repository. It can be found at this link, http://dx.doi.org/10.17632/rg27cvw69m.1

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Associated Data

This section collects any data citations, data availability statements, or supplementary materials included in this article.

Data Availability Statement

The datasets generated and analysed during the current study are available in the Mendeley repository. It can be found at this link, http://dx.doi.org/10.17632/rg27cvw69m.1

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