2.1. Inability to pay for the costs of seeking chronic treatment
Highly vulnerable households
Half (6/13) of the
highly vulnerable households had no source of income and depended on gifts from family and neighbours, so regular health care consultation was very difficult.
"At the clinic we were told to take her to hospital. The problem was that we did not have money for transport" (Mother of Polile, Case HV5). As a result 13 of the 16 chronic cases (Fig
1) in the
highly vulnerable group sought treatment at best intermittently and 4 of these 16 cases either hardly consulted at all or relied on self-treatment (
HV2 Khulekani, HV5 Polile, HV7 Phumuzile & HV9 Lindiwe). Lindiwe and Khulekani's stories show how a combination of factors – unemployment or low grant income, livelihoods exhausted from illness and death, multiple illnesses, and limited social networks – prevented consultation:
Both Lindiwe's husband and daughter had been employed but both had died in the last year. With no social grant or employment income, Lindiwe (53 years) was now dependant on gifts from neighbours and friends to look after a family of 10, and as a result she had insufficient resources to seek care for her own chronic illness (Case HV9). Khulekani (37 years) had no source of income as he had lost his job due to ill health. With no relatives to assist, he couldn't afford to seek care, and subsequently died (Case HV2) (From field notes)
Obtaining an exemption from hospital fees was difficult in practice. Although all except two chronically ill patients were eligible for exemptions at public hospitals due to unemployment, fees were incurred for a third of public hospital visits (32 out of 90 visits) during the 10 months of fieldwork. Patients are required to provide proof of unemployment to obtain an exemption but obtaining the necessary paper incurs transport costs to the appropriate office.
Nonetheless, 3 of the 15 highly vulnerable chronic cases had obtained regular treatment and their symptoms appeared to be under control despite poverty (Cases HV13, HV14, & HV15). The key enabling factors were financial assistance from friends or relatives, government grants, and exemptions from public hospital fees. A pension or disability grant ensured access to an exemption as the receipt of a grant was sufficient proof of eligibility.
Esther (38 years) had no source of income and 3 children to support. However, she had a strong social network, with parents who ensured that she sought care. With their help she was able to secure a disability grant, and meet her own health care costs as well as other basic needs for the household. Due to the grant Esther was also able to obtain an exemption at the public hospital, and the cost of her monthly hospital visit amounted to 3–10% of household income (Case HV13). (From field notes)
For those with no income, dependant on gifts from the family, the cost burden of monthly hospital care could be much higher. For example Ernest had to go repeatedly to hospital due to HIV, and the resulting cost burden fluctuated between 6–60% of monthly household expenditure, depending on how many times he was required to go, and whether he was too ill to travel by public transport (Case HV15). Without formal social support, other highly vulnerable households failed to obtain regular care.
Vulnerable and secure households
Although income was unpredictable or insufficient at times, vulnerable households were generally able to meet basic needs. All the 11 chronic cases from vulnerable households had sought care in the past, or were able to do so during fieldwork. The 8 cases in the secure group had sufficient resources to seek care during fieldwork. Phosiwe (Case S4) went regularly to hospital for her check up and to collect her hypertension tablets. The trip amounted to 4% of her monthly income.
2.2 Limited availability of the inputs and services required for chronic care
Sufficient resources to seek care did not necessarily result in regular treatment and control of symptoms because of health system weaknesses and the unavailability of inputs and services required for chronic care. For example, only 4 of the 11 chronic cases in
vulnerable households, and 5 out of 8 chronic illnesses in the
secure households, were treated regularly (Fig
1). Weaknesses were of various types.
Clinical weaknesses in diagnosing and prescribing at clinics
The chronically ill respondents diagnosed with TB, high blood pressure, as well as HIV, had all attended a public hospital to commence treatment. For example, Ernest (
Case HV15) visited the district hospital 4 times in the first month of his illness, firstly to treat his sores, secondly, for a TB test, and thirdly to obtain his TB results and have an HIV test. On his fourth visit his results were not ready and he was told to come back in 2 weeks. With each visit he had to pay transport costs and a consultation fee. For
highly vulnerable and
vulnerable households, repeat visits generated cost burdens amounting to 30–50% of monthly income (
Cases HV15, HV13, V4), unaffordable without gifts from social networks[
14]. For example, Decan (a 7 year old boy from a highly
vulnerable household,
Case HV11) had been unable to complete a course of TB treatment because of his mother's death. Although he was told he had to return to hospital to start a new course, his family did not take him because regular trips to hospital were unaffordable.
Patients with hypertension had to attend a hospital to obtain a confirmed diagnosis and appropriate prescription. After several months, or in some cases years of monthly visits to a public hospital, patients might be referred downwards to a primary care clinic so that they could collect their medication locally (Nancy Case V8 & Phosiwe Case S4). Elphas (Case HV12) was the one exception. After shopping around at different primary care clinics for several months, causing considerable delay, a nurse at his local clinic provided treatment without a hospital visit.
Interrupted drug supplies
Respondents complained that public clinics repeatedly ran out of drugs. For a highly vulnerable household such as Elphas's (Case HV12), the regular stock outs at his closest clinic led to 'shopping around', non-consultation and self-treatment, rather than wasting funds on transport for a fruitless trip to his local clinic. High blood pressure patients from secure households also faced regular drug shortages. As a result Ruth (Case S8) took a sample of her pills to the local chemist who sold her some without a prescription, and Phosiwe (Case S4) regularly returned to the district hospital to ensure she had the necessary supply of pills. In comparison, Elphas (Case HV12) from a highly vulnerable household who had more complex symptoms and an unclear diagnosis did not have the funds to go the chemist or to visit the hospital.
Weaknesses in the referral system
Referrals between public clinics and hospitals were common. The general pattern was initial identification of a chronic problem at the clinic, diagnosis and prescription at a hospital, and then either continued treatment at the hospital or referral to the clinic. Across the three livelihood groups, there were more successful referrals than failures. A variety of reasons explain the failures that did occur. Most common were the lack of an ambulance, or household inability to pay for transport and hospital fees. In one case differing diagnoses by the clinic and the hospital led to a failure of communication between the two leaving the patient confused as to where she should go for subsequent treatment (Case V3 Losta). In another, the necessary paperwork was not completed and when the family tried to trace a patient they were told that she had been discharged, when in fact she had been referred to a hospital further away (Case V2 Nomsa). In two cases, the patients returned home without instructions to return to either hospital or clinic, despite continuing ill-health (Cases V4 Glory & V5 Vusi). Patients in this setting appeared relatively 'unempowered', unlikely to ask questions to clarify what to do next and likely to get 'lost' and give up. In particular, highly vulnerable households seemed less likely to take alternative action. For example Decan's siblings just continued to ask for TB treatment from the clinic (Case HV10), and Lindiwe resorted to not consulting and the use of herbs to control her symptoms (Case HV9). In the vulnerable group, Nomsa turned to private doctors after a failed referral (Case V2), and Glory and Losta resorted to self-treatment and faith healers (Cases V4 &V3).
Inadequate ambulance services or lack of other subsidized transport
The access barriers for Decan (Case HV11) and others from highly vulnerable households included the transport costs of getting to hospital. Sipho (Case HV14) had been unable to complete a previous course of TB medication due to transport costs, and during the fieldwork became critically ill. An ambulance was not available to take him to hospital or to return him back to the clinic after his inpatient stay. On the first occasion all the drivers were attending a meeting; on the second, there was no ambulance in a suitable condition to transport patients. In contrast, patients from the secure group were able to pay the taxi fare to hospital, or use a relative's car. Thus, Phosiwe, Dorries, Nonhlanhla, and Sbusisio's mother (Cases S4, S5, S6, S7) all traveled to hospital on a regular basis to collect medication.
Tracing non-attending patients
For most chronic illnesses, regular attendance at a facility is crucial, and tracing non-attending patients is a necessary, but difficult task. The impact of failure to follow up with patients can be seen within the 30 case study households. Within the year prior to the start of fieldwork, there were 6 identified cases of TB that had not been cured, 4 of which had resulted in death. The difficulties in following up patients are significant, given staff shortages, lack of a system for reimbursing nurses for transport costs, and the difficulty of tracing patients. Despite these problems there were two cases of nurses going out of their way to reach out to patients experiencing difficulties in accessing care. In one case a nurse was worried about Sipho (TB 23 years old) and so visited his mother so that she could give appropriate advice (Case HV14). In the second case, the nurse visited Ruth (HBP 77 years old) to ask her to return to the clinic to collect her high blood pressure pills (Case S8).
2.3 Unproductive patient-provider interactions and poor acceptability
For 13 of the 34 illnesses, respondents could not explain their illness, and did not have, or had not accepted, an allopathic diagnosis, despite seeking care, often more than once, at a public health facility (Fig
1). The case below shows how the lack of a clear diagnosis combined with problematic patient-provider interactions could lead to inappropriate treatment action or no action.
Kulani (an 11-year-old boy) had had difficulty breathing for several years. At one monthly visit his mother said he looked as if he had had a stroke as he was unable to straighten his fingers. The following month he fell from a sofa with a 'terrible headache', after which his leg and hand became stiff. His mother explained that neighbours said the illness was caused by vukulu (when social norms have been broken by borrowing items from the husband's relatives) while others said he had a stroke. After the fall the family consulted a prophet, a traditional healer and a clinic, which referred him initially to a local hospital, from where he was referred to a regional hospital. No family member was allowed to accompany him in the ambulance to either hospital, and with no funds for transport, the family could not talk to a doctor. They did not appear to have explanation for his illness or knowledge as to what was appropriate subsequent action. When Kulani returned in poorer health, his family saw the hospital treatment as a failure, consulted a faith healer rather than return to hospital, and the child died soon afterwards. (Case HV3). (From field notes)
Without sufficient knowledge of their condition or treatment, some patients switched numerous times between healers ('healer shopping'), unclear as to who could provide relief.
In November, during an episode of shingles, Glory (45 years) visited a traditional healer, a Zionist Christian church prophet (ZCC), and 2 public clinics. In March with severe headache, dizziness, vomiting, and diarrhea, she became unconscious and unable to move for 3 days. Her husband took her to a ZCC prophet, who said it was caused by witchcraft, but he couldn't cure her. Her husband insisted she visit another faith healer. Over the next few months she continued taking blessed tea from the ZCC, and began to feel stronger. In June she began to cough and consulted a local clinic. Although clinic staff asked many questions, they gave her no explanation for her poor health. The cough continued after she had completed treatment from the clinic, and so she continued with the 'blessed' tea from the ZCC, but didn't return to the clinic. In July as the stomach cramps and chest pains became worse and were accompanied by numbness in her fingers, she visited a second (different) clinic. Although the staff treated her well, the clinic had run out of medication, and she was advised to go to the pharmacy. But Glory had no money left as her funds had been spent on a taxi fare to attend the clinic, and she returned home without medication (Case V3). (From field notes)
Glory's costly and unproductive shopping around between providers contrasted sharply with her husband's, Clifford. Clifford (Case V11) completed his course of TB treatment primarily because Glory reminded him to take his medication, collect his repeat prescription, and insisted he go back to hospital after he had prematurely stopped taking his pills. Glory clearly understood in this case the need to return to the same facility and complete treatment, but either a lack of a diagnosis, or the stigma associated with any diagnosis that had been given to her, prevented her from returning to the same facility.
Lunghile on the other hand, doubted the effectiveness of the treatment for his chronic illness, because it did not lead to cure.
Lunghile (43 years) had recurring sores around his waist, which 'seemed as if it was about to stop after a visit to the hospital,' but only to return after the treatment had finished. "So I don't know whether the medication doesn't have the power to kill this illness, or maybe it is not the right one.' The respondent was not given enough information to be able to have clear expectations of what the treatment could achieve, and what subsequent actions were appropriate. During the 10 months he did not return to hospital to obtain further treatment to control his symptoms, despite his continuing ill health, explaining he wanted to cure his illness rather than just control the symptoms. (Case V2)
Despite its importance, effective communication by a provider is not a simple task. The following case illustrates this:
In December Ernest (49 years) was diagnosed as HIV+. He received a counseling session on living positively with HIV that he relayed in detail in the field interview. Ernest's openness about his status, and his disclosure to his family, suggested Ernest had accepted his HIV status. In July the field notes record: 'He told me that they changed his treatment. They even explained that he has another type of illness not HIV. He told me that they gave him tablets for the burning inside. "I even thought that if they could have listened to me about how I was feeling, they shouldn't have given me those tablets that are for the viruses. If they could have given me the ones that they are giving me now I was going to be a much better person. I didn't say anything because I felt happy when they changed my treatment. When I took them I feel much better than when I was taking the other drugs". (Case HV15) (From field notes)
Although Ernest had initially accepted his status, assisted by a thorough counseling session, several months later, due to confusing messages from health providers, he believed he had another illness.
When patient-provider interactions were productive, they not only enabled the patient to take the appropriate action, but also had two important additional effects. First, with sufficient understanding of the problem, and convinced of the efficacy of treatment, highly vulnerable households were able to explain and justify their need for financial support to members of their social network, enabling access to care. Second, patients and their families gained considerable experience of their disease and became a community resource that the health system could draw on to assist other patients. Below, Sipho's story (Case HV14) is contrasted with that of Jafeth (Case HV11) to illustrate these effects.
Sipho's household had no income, other than gifts from family and friends, due to the recent death of his father. Sipho (23 years old) had been treated for TB last year, but had defaulted on treatment. When he attended a clinic, the nurse thought he was hiding something, and so visited his home to talk to his mother. After an inpatient stay he had to attend the clinic for daily injections for 3 months. His mother had sufficient understanding to explain and justify their need for financial assistance. As a result friends and relatives provided approximately 300 rand a month, in a community where the average per capita income was 260 rand a month. Later on the clinic allowed the family to collect his pills when he had to travel to find work to support the family. Subsequently the mother became a volunteer in a local TB DOTS group, and gave informational and emotional support to others, as it had been given to her. (Case HV14)
Jafeth (11 years old) had had an uncompleted course of treatment for TB. He was taken to a second hospital where TB was not diagnosed but he was treated for other illnesses. Due to his continuing symptoms he was taken to a traditional healer. A neighbour advised the mother to take him back to the original hospital. The mother did so, but the nurses berated her for taking so long to return. The mother, humiliated, lied saying the child's parents were not at home, and that she was a neighbour who had come to the child's rescue. After returning home, the child was sent to his grandmother's to be looked after. (Lindiwe's son, Case HV10)
The humiliation experienced by Jafeth's mother did not 'empower' her to be of assistance to others. Instead she felt unable to ensure her son's return to health and this responsibility was passed to her mother. In contrast, the knowledge Sipho's mother gained from interaction with the nurses 'empowered' her to become a resource within the community.