Research Article SANTA vs. public tuberculosis hospitals: the patient experience in the Free State, 2001/2002

JC Heunis, PhD Centre for Health Systems Research & Development, University of the Free State HCJ van Rensburg, DPhil Centre for Health Systems Research & Development, University of the Free State H Meulemans, Ph.D Department of Sociology, University of Antwerp

Abstract: Curationis 30(1): 4-14 This paper reflects on the appropriateness of the decision to close down a non­ governmental organisation (NGO), state-aided tuberculosis (TB) hospital in the Free State in 2003. Henceforth hospitalisation of TB patients would take place at public district hospitals. A survey conducted late-2001/'early-2002 revealed a more positive patient experience of hospitalisation forTB in public hospitals than in the NGO hospital. Consideration of the patient experience serves to inform the debate concerning continued outsourcing of TB hospital care to NGOs in South Africa. This study discusses comparative findings in respect of patients’ biographic and socio-economic characteristics, health beliefs, satisfaction with hospitalisation, experience of stigmatisation, adherence to treatment and absconding from hospital. Opsomming Hierdie artikel reflekteer op die toepaslikheid van die besluit om ‘n nie-regerings organisasie (NRO), staat-ondersteunde tuberkulose (TB) hospital in 2003 te sluit. Voortaan sou die hospitalisasie van TB pasiënte in openbare distrikhospitale plaasvind. ‘n Opname wat laat-2001 /vroeg-2002 uitgevoer is het ‘n meer positiewe pasiëntervaring van hospitalisasie vir TB in publieke hospitale as in die NRO hospitaal openbaar. Oorweging van die pasiëntervaring dien om die debat rakende voortgesette uitkontraktering van TB hospitaalsorg aan NROs in Suid-Afrika toe te lig. Dié studie bespreek vergelykende bevindinge met betrekking tot pasiënte se biografiese en sosio- ekonomiese kenmerke, gesondheidopvattings, tevredenheid met hospitalisasie, ervaring van stigmatisasie, trouheid aan behandeling en “dros” uit die hospitaal.

Introduction evaluations (Schneider & Palmer, 2002: Excellence within any given hospital 32). Also, the (social) experience of serv ice may be described by means of hospitalisation has not been Correspondence address: standards and criteria in accordance with systematically studied in any of the major Dr JC Heunis the expectations of the different role- hospital settings in South Africa, be they CHSR&D (100) players: funding bodies, service public, private-for-profit, industry-based, University of the Free State providers and patients. Among these state-aided or voluntary. The dearth of PO Box 339 patients are neglected in the South such research can only mean that health Bloemfontein, 9300 African “hospital” literature. This is policy makers and managers are neither Tel: (051)401-2181 contrary to an international tendency to supported by “social statistics” nor by Fax:(051)444-5011 assess the opinions of health service understanding of the patient perspective E-mail: Heunisj.hum(a;mail.uovs.ac.za users as an integral part of quality to inform their decisions about hospitals. 4 Curationis March 2007 This study reflects on the patient standards of care at some of its hospitals dimension also involved a focus on TB experience at the one NGO hospital (Altenroxel, 2001: 6; Kirk, 2001: 3; Van programme managers and staff and their offering TB care in the Free State one Rensburg, 2000:2). views, amongst others, on year before its closure in January 2003. hospitalisation forTB(cf. Heunis, 2005: Ownership of this hospital vested with The era of NGO hospitalisation for TB in 221). This article discusses findings the South African National Tuberculosis the Free State has then seemingly come related to TB hospital patients’ experience Association (SANTA). This NGO has to an end. Barring those few patients who of hospitalisation for the disease (cf. also operated specialised TB hospitals across can afford private care and a small Heunis 2004a: 161 -210). The findings South Africa since the 1950s. In 1999, number of patients in the new provincial are inclusive of these patients’ SANTA had 22 hospitals specialising in MDR-unit, TB patients are at present biographic and socio-economic TB care: seven in the Eastern Cape, six in treated at primary health care (PHC) characteristics, health beliefs, KwaZulu-Natal, three each in Gauteng clinics and public hospitals. Except for satisfaction with hospitalisation, and Mpumalanga, two in the Western MDRTB, this also means that the practice experience of stigmatisation, adherence Cape, and one in the Free State. By 2003, of long-term hospitalisation for TB has to treatment and absconding from not only the Free State, but also North now been abandoned. hospital. In all this data helps to reflect West, Northern Province and the on the research question: how Northern Cape, no longer had a SANTA Despite its unique position as the Free appropriate was the closing o f a hospital hospital (Inpatient Care Team 2003). State’s only TB hospital, and even amidst that contributed to TB control for half a There was clearly a questioning of the an escalating TB epidemic in the century? traditional role of SANTA hospitals and province, Santoord Hospital’s closure a trend to oust this NGO provider from was imminent. Reportedly, the patients Methods intramural TB care. In tjie Free State, at addressed letters to the Free State MEC The imminent closure of Santoord least, this role was largely assigned to for Health complaining, amongst others, Hospital meant that a cross-sectional public hospitals. about food at the hospital and the staff study, i.e. a once-off survey of TB who they (the patients) experienced as hospital patients at Santoord and the The Claudius Brink SANTA Centre “dominating”. All these dynamics sampled public district hospital, would (Santoord Hospital) was established in pointed to the necessity to gain insight be an appropriate design. Similar to 1952 and was operated by SANTA until into how the patients themselves medical procedures like a biopsy or an x- its closure in 2003. Santoord was a experienced Santoord Hospital. As it was ray, cross-sectional studies observe provincially-aided hospital (Van Vuurcn clear that public district hospitals were whatever is being studied as if a section 2001). The annual number of admissions already taking over the hospitalisation of time is being cut out for observation was highest in 1997 at 710 patients. of TB patients previously referred to (Baker, 1994: 106). No suitable instrument During 2001 the hospital admitted 602 Santoord, it was thus also opportune to being in existence an interview schedule patients (442 males, 152 females, and 8 conduct a cross-sectional study to was developed from the literature. This children) of whom 477 were discharged, compare the TB hospital patient schedule contained both closed and 11 transferred, 23 absconded, and 105 experience in these two types of open-ended questions. The open-ended died. Santoord Hospital's budget for hospitals. questions were included so that 2002/2003 was R7 632 756. The cost to respondents in their answering of the Free State Department of Health per The current study formed part of a larger questions would make use of what came patient day for this period was R 104-55. project, the Joint research project on to their own - rather than the researchers’ Santoord was not physically designed tuberculosis control in the Free State: - minds. The instrument was pre-tested nor equipped to accommodate MDRTB from infection to cure. This project to determine its effectiveness and its patients. However, it did so for three studied TB from various angles with the problems and to improve its reliability. years after the closure of the private aim to inform the provincial TB Preliminary informal pre-testing was Allanridge Chest Hospital in 1999. Just programme and enhance the efficiency followed by formal pre-testing under before its closure the hospital of TB control in the province (cf. Van conditions similar to the actual survey. accommodated 145 TB patients. Drug- Rensburg, Meulemans & Rigouts, 2005: For purposes of the formal pre-test the susceptible patients were hospitalised for ii-iv; Van Rensburg, Meulemans, Rigouts, schedule was administered in face-to- two to three months and multi-drug Heunis, Janse van Rensburg, Matebesi, face interviews with a sub-sample of resistant TB (MDRTB) patients for seven Van der Spoel, Timmerman, De Graeve, patients at Santoord Hospital and the five to nine months. The mean length of stay Pauwels, Portaels, Gryseels & Van district hospitals. During these at the hospital was 125 days. MDRTB Houtte, 2005: 1127). Two focal and interviews the interviewers wrote patients at Santoord were treated in complementary dimensions applied in the comments on the questionnaire and collaboration with doctors/specialists larger study, i.e. social aspects and health thereafter discussed these in an from the University of the Free State and service aspects. The social dimension interactive context with the other were discharged once they had produced included, on the one hand, TB patients’ interviewers and the first author. The three consecutive negative sputa. After needs, perceptions, experiences and questionnaire was corrected in respect discharge they would return to the circumstances, health-seeking of skipped items, response set patterns, hospital on a two-monthly basis for behaviour, health service utilisation and and open-ended questions that solicited follow-up examinations. Santoord closed satisfaction, coping strategies, support ambiguous answers. While it is a at the same time nationally SANTA was systems, and adherence to treatment (cf. limitation of the study that the questions facing allegations of financial impropriety Matebesi, Meulemans & Timmerman, were not subjected to tests of validity, at its head office, and unacceptable 2005: 154). On the other hand, the social the schedule was used to interview 90 5 Curationis March 2007 TB hospital patients during October 2001 Likert scale measurements of patients’ postponed until such time they to March 2002. beliefs about how they fell ill, agreement indicated they were fit to with the necessity of their hospitalisation, continue. In the case of Santoord Hospital satisfaction with care, experience of respondents were selected from an up- stigmatisation, and views of the hospital Validation of the results of the current to-date list by means of a table of random staff represented the dependent study took place via 14 presentations: numbers. Fifty-five Santoord patients variables. Assuming equal intervals six at district-level (Heunis, 2002b); two were selected from the 175 hospitalised between scores of the Lickert Scale, at provincial-level (Heunis, 2002a; Heunis at the time. A hindrance experienced in certain statistically significant differences & Van Rensburg 2002); two at the local sampling patients in the case of public (p <0.05) are noted. Likert scales require university (Heunis, 2002c; 2002d); one hospitals, was that these hospitals were a minimum of two categories (Neuman, at a national conference (Heunis, 2003), not reporting institutions in respect of 2000: 182). In this analysis the two and three at international seminars/ TB and could not provide any kind of outlying categories on either side of the congresses (Heunis, 2002e; 2002f; 2004a). meaningful sampling framework to select Likert Scale were merged and the While the research feedback was respondents from. Consultations with the uncertain category eliminated, so that primarily directed towards health managers of the male and female wards two categories remained, e.g. satisfied managers and workers at the facility, in each of the hospitals showed that and dissatisfied. As it is suited to both district, provincial and national-levels, between six and ten confirmed adult (15 nominal and ordinal measurements, many of the research feedback sessions years and older) PTB cases were lambda (ë) was the chosen measure of included NGO representatives, hospitalised at the time of the fieldwork. statistical association. Lambda is an academics, policy-makers, and national It was then decided to randomly select asymmetric statistic measure of and international collaborators. These 50% of all such cases which realised a association with values ranging between sessions, and particularly the conference, sample size of 35 public TB hospital 0.0 and 1.0. A multidisciplinary approach to patients. Six public district hospitals in research, policy and practice, hosted at the Free State participated in the research: After consideration of the research the University of the Free State one in Thaba Nchu (Dr. J.S. Moroka protocol by the Ethics Committee ethical (Bloemfontein - November, 11-12), were Hospital), two in QwaQwa (Elizabeth Ross clearance for the Joint Free State TB marked by genuine interchange between and Mofumahadi Manapo Mopeli Research Project and the current study the health system research and hospitals) and Goldfields (Goldfields, was obtained from the Faculty of Health practitioner communities. Odendaalsrus and Virginia hospitals). Sciences, University of the Free State. The selection of these hospitals was Authorisation and support for the purposive and based on their serving the research was also obtained from Findings three high-burden TB areas in the concerned managers of the Free State Patients’ biographic and socio­ province targeted by the larger Joint Free Department of Health; i.e. from the Head economic characteristics State TB Research Project. These of Health, the Chief Executive Officer for The mean age of both the Santoord sampling techniques and sample sizes Southern Free State Regional Complex, Hospital patients and the public hospital resulted in a sample representative of and the District Managers for Thaba patients was 37 years. In the combined NGO hospital TB patients, as well TB Mofutsanyana and Lejweleputswa. sample the youngest patient was 15 and patients in public district hospitals in Authorisation and support for the the oldest 59. Amongst the 55 Santoord three high-burden areas in the Free State research was also obtained from the Hospital patients, 52 (95%) and the 35 - Cf. also Heunis (2005: 221); Janse van Provincial Manager of SANTA. public hospital patients, 34 (97%) were Rensburg-Bonthuyzen (2005: 200); and black. The remainder of patients in both Matebesi etal (2005: 158). The following ethical principles were cases were coloured. maintained in respect of the patient Three fieldworkers conducted the respondents: At both the Santoord (n=40/73%) and the interviews in the patients’ home language • Informed consent: public hospitals (n=21/60%) males (mostly Sesotho). Editing of completed Respondents were informed constituted large majorities. Given that interview schedules took place on a daily about the purpose the research the necessity for hospitalisation for TB basis in an interactive team context. This project and their participation in is often the consequence of non­ involved item-by-item checking of the the research was voluntary. adherence to (ambulatory) TB treatment, completed schedules to ensure Consent was sought by means the higher proportions of males consistency, verify and improve the of an explanatory letter in the undergoing intramural care suggests that completeness and the clarity of the case of literate respondents and their adherence was poorer than that of information recorded by the interviewers reading of this letter to illiterate females. Skewed male representations in and, when necessary, return the following respondents. TB hospital patient numbers have also day to interviewees to obtain missing • Confidentiality: The been reported in the USA (Singleton, data and clarify ambiguous information. information supplied by Turner, Haskal, Etkind, Tricarico & respondents was treated as Nardell, 1997:838). In order to calculate differences in the confidential. satisfaction of patients with various • No harm to research subjects: In 1999, the adult literacy rate in South aspects of hospitalisation the chi-square Completion of interviews with Africa was 85% (Turner, 2002: 1449). test was used. The type of hospital, NGO ill and/or fatigued TB hospital Similarly, as judged by their ability to read vs. public, was the independent variable. patients was interrupted and a letter or a newspaper in their home 6 Curationis March 2007 Table 1: TB hospital patients’ gender, race and functional literacy fell ill with TB, compared with the R478 of public TB hospital patients.

SHJ PH1’ In the Free State the costs of TB to Gender Male 40 (72.2)c 21 (60.0) patients include loss of income, as well as out-of-pocket expenses and time Female 15(27.3) 14(40.0) associated with undergoing TB Race Black 52(94.5) 34(97.1) treatment. These costs increase when Coloured 3(5.5) 1 (2.9) patients default, require hospitalisation, and develop MDRTB (Meyer, Booysen Functional literacy Yes 49(89.1) 32(91.4) & De Graeve, 2003). In the current study No 6(10.9) 3(8.6) more Santoord Hospital patients (n=33/ 60%) reported loss of monthly income a. Santoord Hospital due to their falling ill with TB and being b. Public hospitals hospitalised than did public hospital c. n (%) patients (n= 12/34%). On average, Santoord patients also reported having language, respectively about one in Aerts, Grzemska, Kimerling, Kluge, Levy, lost this income for a longer period (25 every ten patients at both Santoord (n=6/ Portaels, Raviglione & Varaine, 2000: 16). months) than did public hospital patients 11%) and at public hospitals (n=3/9%) (15 months). These are protracted were not functionally literate. South Africa is doing its best to shake periods considering that a study in India off the hackles of poverty. But, as regards found that the average period of loss of Prisoners very often originate from the real disposable income per household, wages due to TB was three months most vulnerable sectors of society - the citizens were equally poorly off at R9 263 (Rajeswari, Balasubramanian, poor, the mentally ill and those per annum in 2002 and at R8 739 in 1992. Muniyandi, Geetharaman, Thresa & dependent on alcohol or drugs. These In 2002, Statistics South Africa Venkatesan, 1999: 869). groups already have an increased risk of established that the country’s diseases such as TB. In prison, these unemployment rate was 29.4% and for Patients’ health beliefs problems are amplified by poor living the Free State 33.5% (Dimant, 2003: 139). The interpretation of symptoms triggers conditions and overcrowding (Kimerling, However, during the interviews only ten the search for care and the kind of care 2000: S 161; Reichman & Hopkins Tanne, (18%) Santoord Hospital patients stated that is sought. Rather than the symptoms 2002: 90). One-third (n=18/33%) of the that they had been unemployed before themselves, it is the varying Santoord Hospital patients had been in they fell ill with TB. On the other hand, interpretation of their meaning and what prison at least once, and had on average among the public TB hospital patients, they imply for a functioning social life endured 25 months of incarceration. 15 (43%) reported that they were that motivate people to seek care. Among the public hospital patients one- unemployed before they contracted TB. Patients’ understanding of symptoms, quarter (n=9/26%) had been in prison, on Was there perhaps a tendency among their choices on when and from whom to average for 16 months. That so many of Santoord patients to exaggerate their seek help, and their response to medical the hospitalised TB patients had been in good fortune before they fell ill with TB? regimens conform to their own prison before ending up in hospital gives If so, this might then also have explained explanatory model of what is wrong with credence to the importance that the WHO the higher mean monthly income reported them. Nevertheless, health care providers ascribes to TB control in prisons (Bone, by Santoord patients at R598 before they often do not recognise this: “Patients’

Table 2: TB hospital patients’ beliefs regarding how they fell ill with TB

Response to open-ended question SH PH

Uncertain, e.g. “ really don’t know”. 18(33.3) 9(26.5)

Work and environmental factors, e.g. “dust”, “chemicals”, “air pollution” and 15(27.8) 5(14.7) “working in the mines”.

Western-medical, e.g. “from infected persons”, “from somebody coughing”, 13(24.8) 14(41.2) “this is the result of AIDS” and “I had a weak immune system”.

Personal high-risk behaviour, e.g. “smoking”, “alcohol” and “lack of hygiene”. 7(13.0) 3(8.8)

Diet, e.g. “poor food”, “drinking too much cold liquids” and “coolaid”. 1(1.9) 2(5.9)

“Bewitchment”. - 1 (2.9)

7 Curationis March 2007 Table 3: TB hospital patients’ health beliefs

Statement Hospital Agree Disagree X2 df P

“The medicine I am given at the hospital SH 45(83.3) 9(16.7) will make me well.” 11.6 l .001 PH 15(48.4) 16(51.6)

“Traditional medicines are more effective SH 8(15.7) 43(84.3) than the medicine I receive from the 9.0 l .003 hospital.” PH 12(48.0) 13(52.0)

Table 4: TB hospital patients’ views of the necessity of their hospitalisation

Statement Hospital Agree Disagree X2 dr c

“I am so ill that I need to be in hospital.” SH 33(60.0) 22(40.0) 6.0 l .014

PH 28(84.8 ) 5(15.2) efforts to cope with symptoms, or adapt situation was of grave concern. Health Survey of 1998 found, among a treatment recommendations to the As regards their beliefs in western vs. sample of 12 860 households, that 12% apparent course of the disease, such as traditional medicine, Santoord patients of public hospital users were dissatisfied lessening discomforting symptoms, are were significantly more inclined to value with the services rendered by these often construed by providers as the former. This might be explained by facilities, compared with 7% of private ignorance, lack of concern, vacillation, their comparatively longer experience of hospital users (Department of Health, or non-adherence” (Rubel & Garro, 1992: hospitalisation for TB and their 2002: 193). In 1998, rural hospitals in 628). observation of the beneficial effects of South Africa often had unreliable the treatment provided on themselves electricity (33%) and water (39%) supply. Kelly (1999: 233) found that patients and other patients. These hospitals often did not have e-mail understood TB through the medical access (65%), functioning sonar model. One-quarter (n= 13/25%) of the Even though they were more inclined to equipment (65%), oxygen in wards Santoord Hospital patients during the value western medicine forTB, Santoord (19%), monitoring of drug expenditure interviews offered a “western-medical” patients were also significantly more (15%), community representation in the explanation in response to an open- likely to disagree that it was necessary form of a hospital board (40%), complaint ended question as to how they became for them to be hospitalised than were procedures (33%), after-hours X-ray ill with TB. A much larger proportion public hospital patients. services (15%), and access to 24-hour (n= 14/41%) of the public TB hospital blood transfusion services (44%) patients offered such an explanation. Patients’ satisfaction with (Edwards-Miller, Pick, Conway, Fisher, hospitalisation Kgosidintsi, Kowo & Weiner, 1998:161- While Santoord Hospital patients more During the late 1990s many health 184). often did not know how they became ill facilities, and especially public hospitals, with the disease, they were also more in South Africa were in a dilapidated state In 1999, the nurse:patient ratio in South inclined to ascribe their infection with TB with crumbling electrical, water and steam African public district hospitals was to work and environmental factors (n= 15/ systems. Accelerated decay of hospitals below that which was required, as was 27%) than were public TB hospital had resulted from minimal maintenance. medical staffing levels in some cases patients (n=5/14%). These findings The inappropriate design of many (Morris, 2001:180). It was anticipated that reflect negatively on the then current hospitals had led to overcrowding, lack the Public Service Amendment Act No 5 health education at both the concerned of privacy and expensive modes of service of 1999 would allow hospital managers types of hospitals, but especially at delivery. Some hospitals had as many as to appoint more and higher levels of staff. Santoord where patients were 25% more beds in use than originally Nevertheless, the filling of vacant posts hospitalised much longer than at public anticipated by the hospital planners and remained a key frustration. It was difficult hospitals. In both samples large architects. This may be ascribed to the to obtain approval for the filling of posts proportions of TB patients were uncertain fact that the previous government had and to retain existing skilled staff in about how they became ill with TB not upgraded or replaced hospitals as hospitals. South African hospitals were (Santoord Hospital, n= 18/33%; public they reached the end of their natural being depleted of their longest serving hospitals, n=9/27%). Given that the lifespan (Doherty, Kraus & Herbst, 1996: and most skilled nurses by voluntary infectiousness of TB is such a prominent 65; Heunis, 2004c: 464 - 467). severance packages and recruitment by theme in TB health education, this The South African Demographic and overseas agencies (Boulle, Blecher & 8 Curationis March 2007 Table 5: TB hospital patients’ satisfaction with care

Statement Hospital Agree Disagree X2 df P

“1 am happy about the way I am treated SH 34(63.0) 20(37.0) at this hospital.” 7.0 1 .003 PH 32(91.4) 3(8.6)

“1 am well looked after at this hospital.” SH 34(61.8) 21 (38.2) 6.9 1 .009 PH 29(87.9) 4(12.1)

Burn, 2000: 231-238). Capital Pérez-Stable & Stewart (2005) found that patients of this and the six public sector infrastructure and equipment were physicians’ acceptance of the role of hospitals. Although substantial deteriorating at levels far exceeding spirituality, of family and ethnicity-based proportions of public hospital patients expenditure on rehabilitation, discrimination were cultural factors were also dissatisfied with all the aspects maintenance and replacement of such specific to non-White patients’ listed in Table 6, ranking according to the infrastructure and equipment. perceptions of the quality of their medical lambda test indicates that not receiving Furthermore, real increases in funding for encounters. Radwin (2000: 179) found enough food and being unable to express hospital services had, on aggregate, not that perceptions of the quality of nursing their cultural beliefs were the most translated into increased staffing, but care were characterised by professional important sources of dissatisfaction were rather spent on increased salaries knowledge, continuity, attentiveness, characterising the NGO hospital patients and benefits for existing staff. coordination, partnership, as being more dissatisfied with care. individualisation, rapport and caring. On Despite the aforementioned conditions their part Persson, Gustavsson, Only in two respects were most of the at public hospitals - which must surely Hellstrom, Lappas & Hultén (2005: 51) Santoord patients satisfied, safety at the translate into high levels of discontent found that patients’ perceptions of hospital (n=34/62%) and the provision among public hospital users - it was nursing care were strongly influenced by of bedclothes (n=31 /56%). In contrast, found in the current study that TB their dissatisfaction with the information most public TB hospital patients were patients at the NGO Santoord Hospital they received about the results of medical satisfied, even very satisfied, with the were significantly more dissatisfied with examinations and laboratory tests. As general appearance of the hospital, the care they received than were their regards the reasons for their safety, bathroom facilities, bedclothes, public sector hospital counterparts. dissatisfaction with care at Santoord sleeping arrangements, privacy, hospital Hospital, the following significant clothes and the distance the hospital was Nápoles-Springer, Santoyo, Houston, differences were observed between located from their homes.

Table 6: TB patients’ satisfaction with care: ranking of differences in Santoord Hospital and public hospitals

A Statement Hospital Agree Disagree X2 df e

“I get enough food at this SH 27(49.1) 28(50.9) hospital.” 4.4 l .036 .893 PH 25(71.4) 10(28.6)

“1 am able to express my culture SH 13(24.1) 41(75.9) at this hospital.” 7.1 l .008 .705 PH 15(53.6) 13(46.4)

“I am satisfied with the general SH 25(45.5) 30(54.5) appearance of this hospital.” 10.5 l .001 .499 PH 28(80.0) 7(20.0)

“I am satisfied with the distance SH 13(23.6) 42(76.4) of this hospital from my home.” 13.8 l .000 .123 PH 22(62.9) 13(37.1)

“I have sufficient privacy at this SH 13(23.6) 42(76.4) hospital.” 15.0 l .000 .072 PH 21(65.6) 11 (34.4)

9 Curationis March 2007 Table 7: TB hospital patients’ views of stigmatisation of TB

Statement Hospital Agree Disagree X2 df e

“I personally believe that having TB is a SH 26(47.3) 29(52.7) disgrace. ■ 15.7 1 .(XX) PH 31(88.6) 4(11.4)

“Most people in my community believe SH 29(54.7) 24(45.3) having TB is a disgrace.” 6.6 1 .010 PH 27(81.8) 6(18.2)

Even though the public hospital patients meanings are conveyed by verbal major problem (Burman, Rietmeijer & recorded a higher degree of satisfaction systems and body language intended to Sharbaro, 1997: 1168; Fouad Rabahi, in the survey, this should not be taken as control others’ definition of the situation. Batista Rodrigues, Queiroz de Mello, de unequivocal proof of amicable conditions In hospitals patients are thwarted in this Almeida Netto & Lineu Kritski, 2002:63; at the public hospitals under study. endeavour by the stigmas attached to Liefooghe, Michiels, Habib, Moran & De Indeed, some authors extend Parsons’s them by others and which differentiate Muynck, 1995: 1685; Meulemans, (1971: 285,428 - 479) concept of the sick them from “normal” people. Mortelmans, Liefooghe, Mertens, Abkar role to the hospitalised sick role, which Zaidi, Farooq Solangi & De Muynck, apparently includes “an obligation to Like Goffman, Foucault also devoted 2002:249). Instead of laying all blame for accept hospital routine without protest” much attention to studying organisations interrupted or discontinued treatment on (Cockerham 2004: 284). Short-term in which individuals are physically the patient, it should be acknowledged inpatient care subjects the patient to a separated from the outside world for long that those people least likely to comply role of submissiveness to authority, periods. In institutions such as Santoord are those least able to comply (Hurtig, enforced co-operation, and Hospital people are kept hidden away or Porter & Ogden, 1999: 553). Hence, in depersonalised status: “heeft de zieke de incarcerated. Such systems differ Ghana, Twumasi (1996:43) recommended plicht om de hulp van een arts aan te radically from other organisations that, instead of blaming TB patients for wenden en om met deze professionele because of their closed nature. Hence non-compliance with treatment, the TB instantie samen te werken teneinde de Foucault (1971: 229) remarks: “Is it programme ought to accept the genezing the bevorderen. De rol van de surprising that prisons resemble responsibility of treatment failures: “A zieke en van de arts komen zodoende met factories, schools, barracks, hospitals, greater understanding of risk factors for elkaar in contact en doen de sociale which all resemble prisons?” Fillingham non-compliance would facilitate structuur ontstaan waarbinnen de (1993: 61) aptly captures Foucault’s formulation of policies to provide modeme medische praktijk functioneert” thoughts on stigmatisation in the solutions to non-compliance. This would (Meulemans, 1999: 519). The current hospital: “A bunch of people crowd result in diminished TB morbidity and study suggests that protracted hospital around the bed staring at her, perhaps mortality, a reduced exposure to infective stay may give rise to patients rejecting poking and feeling. She is supposed to cases by the rest of the community and a the submissiveness demanded by the be silent unless she is asked a question, reduction in the incidence of [TB] traditional hospital sick role. and at times she is used as the basis for nationally.” The perennial compliance the ritual humiliation of a student. She problem lies at the heart of the persistent Patients’ experience of becomes a thing, a disease, as the question of “individual agency” vs. stigmatisation doctors are not interested in anything “structural constraint”: “How is a Having TB is an isolating experience else about her.” patient’s ‘compliance’ to be understood: (Kelly, 1999: 233). The survey showed In the current study it was found that as individual action, as a response to that the majority of TB hospital patients public TB hospital patients were social circumstances or cultural in the combined sample experienced significantly more inclined to experience background, or as effect of structural stigmatisation. Goffman (1963: 11) traced both self- and community-induced factors and pressures, including access the Greek concept “stigma” to “bodily stigmatisation than Santoord Hospital to treatment?” (Farmer & Nardell, 1998: signs designed to expose something patients. It could be, that where they were 1014). Compliance to TB treatment is a unusual and bad about the moral status gathered together with many other TB global conundrum. of the signifier. The signs were cut or patients for an extended period, Santoord burnt into the body and advertised that patients had a broader frame of reference Endeavours to retain more patients in the bearer was a slave, a criminal, or a as to the extent of TB, realised that there treatment and the search for new traitor - a blemished person, ritually were many others in the same position combinations of medicine to ease disease polluted, to be avoided, especially in as they, and therefore felt less different, control are both at the core of the public places”. A human being has a less isolated and less stigmatised. biomedical institution. Not at the core of stake in the forming of a situation this institution is investigation of through carrying into it symbolic Patients’ adherence to treatment patients’ preferred modes of treatment meanings which will be to his/her and absconding from hospital and of their understanding of the disease advantage. During interaction these Patients’ adherence to TB treatment is a and how this encourages or discourages 10 Curationis March 2007 the seeking of biomedical care. This is blacks’ “ignorance or native mentality” that they had, as opposed to none of the probably because delivery of health care (Packard, 1992: 50-54). Some of the public hospital patients. All of the is governed by time-honoured traditions factors contributing to non-completion “absconders” among the Santoord learned during professional training and of treatment in South Africa were common patients reported that they were back in supported by programmatic norms. Thus, to outpatient TB treatment programmes hospital within five months. In fact, one efforts to modify attitudes and behaviour around the world. However, others were was back within one week and another of clinical staff members often meet with peculiar to the discriminatory political and within one month. Two of the patients resistance. To illustrate this problem, economic realities of a country in which stated that they had found ways to Rubel & Garro (1992: 631 - 632) discuss apartheid ruled, e.g. most blacks who continue taking their TB treatment while research at San Francisco General contracted TB lost their jobs. absconding. Respectively, the five Hospital where in 1996 more than a patients who had absconded provided quarter of TB patients were not meeting The emergence of MDRTB, and its the following reasons for absconding: their treatment appointments. The associated compliance issues, has been “The person looking after my house had researchers’ approach was firstly to described as “thorny from the damaged it”, “I needed to see my interview hospital staff to ascertain their perspective of a host of socio-medical children”, “I thought I was cured”, “It assessment of the problem. The staff disciplines” (Fanner, 1997:349): The word was my father’s funeral” and, “I did not attributed irregular attendance to the “compliant” itself, “has the unfortunate get enough food at the hospital”. social and cultural characteristics of the connotation that the patient is docile and user population: “elderly patients, subservient to the provider”. Farmer When asked how their health was workers, skid row alcoholics, the finds it even more unfortunate that the affected by their absconding from uneducated or ignorant, and those with term exaggerates “patient agency”, since hospital, four of the patients stated that a language barrier such as the Chinese it implies that all patients possess the their health had deteriorated. Ironically, and Latin Americans”. The health ability to comply or not to comply with the other stated that her health had workers claimed that such patients failed chemotherapy: This makes no sense improved. She claimed that she had to attend treatment as regularly as other since “[experience across the boundaries completed her treatment at a clinic. The groups. The study, secondly, also of time and place have shown that there tlve absconders were also asked what included a patient interview survey. The are radical differences in the ability of they did while away from the hospital. patients advanced altogether different different populations to comply with Two stated that they sought employment, reasons for missed appointments, e.g. demanding therapies”. one went back to work, and another inconvenient clinic open hours and attended a funeral. The other stated that location; registration repeated at each Poor application of patient-centred care he did “nothing”. What made these visit; rigidity in taking patients in order has jeopardised adherence to TB patients return to hospital? Judging from of registration regardless of extenuating treatment in the Free State (Van Rensburg their responses they had little choice in circumstances, overcrow'ding and poor el al 2004: 1128). How might the the matter: “I became very ill” (n=2); “The ventilation in the clinic, punitive staff adherence of TB patients to their ‘tleleniki’ [clinic] ordered it” (n= 1); “My practices, and doctors not being able to treatment in hospitals be described? employer sent me back” (n= l), and “My converse with patients in their own During the interviews, Santoord and father forced me to return” (n= l). language. The largely contradictory public hospital patients were asked if results of the two surveys led to decisions they had ever forgotten to take their The survey also set out to establish how to reorganise services, decentralise staff medication. In the combined sample only absconding patients were received back into district teams, and to make them two (4%) answered that they had. They at hospital. Three of the five patients available in the neighbourhoods where were both in the Santoord Hospital stated that they were “welcomed”. One patients lived and at times suiting group. When asked what the reason for said that the hospital staff were angry patients’ work schedules. In-service this omission had been, one stated that with him and even refused to treat him education took place to inform staff of he was asleep when the nurse brought for a while. The other was reportedly told patients’ points of view and the the medicine, while the other “just by a Santoord staff member to “keep implications thereof. These interventions forgot”. Patients were also asked quiet” about having absconded. - based on consideration of patients’ outright: “Have you ever purposely social lives and cultural expectations - refrained from taking you medication?” decreased missed appointments for TB Again, only two respondents admitted Conclusion treatment from 26% to 4%. that they had. Both these Santoord A cynical interpretation of the findings Hospital patients cited the side effects of the survey would be to infer that the Historical factors impacting on TB of the TB treatment as the reason for their public hospital TB patients were more treatment adherence in South Africa behaviour. satisfied with care because they had not include that the country lacked adequate endured a long enough episode of it. health facilities or staff to supervise During the interviews patients were also Indeed, it is a limitation of the study that treatment. The responsibility to achieve asked if they had ever left any hospital, the stances of (long-term) Santoord “treatment-to-cure” was left to patients where they were undergoing TB Hospital patients are compared with those themselves. Patients were traditionally treatment, without being officially of (short-term) public hospital patients. labelled as “defaulters”, implying that discharged or granted leave of absence However, barring private-sector hospital they were to blame. Moreover, in the past by the hospital. Of the 18 Santoord care, at the time of the survey these were white medical authorities in South Africa Hospital patients who had previously the only hospitalisation options available often attributed treatment failure to been hospitalised for TB, five answered to those reliant on public and state-aided II Curationis March 2007 health care. Tuberculosis Association (SANTA) for authorising and supporting the research FARMER, P & NARDELL, E 1998: By 2003 the Free State was not the only and for entertaining the findings. Nihilism and pragmatism in tuberculosis province that no longer had a SANTA control. American Journal of Public hospital. North West, Limpopo, and the Health, 88(7): 1014. Northern Cape had also done away with References ALTKNROXEL, L 2001: TB fighters face this type of NGO hospital care. Was poor FILLINGHAM, LA 1993: Foucault for crisis over spending scandals. The Star, quality of care a contributing factor in beginners. London: Writers and Readers. 26 March 2001:6. the demise of SANTA hospitals? The patient survey at Santoord Hospital FOUAD RABAHI, M; BATISTA BONE, A; AERTS, A; GRZEMSKA, M; indeed suggests that this was the case. RODRIGUES, A; QUEIROZ DE MELLO, KIMERLING, M; KLUGE, H; LEVY, M; It was not that Santoord patients did not F; CAETANO DE ALMEIDA NETTO, F PORTAELS, F; RAVIGLIONE, M & want to be hospitalised. Rather they just & LINEU KRITSKI, A, 2002: VARAINE, F2000: Tuberculosis control did not want to be hospitalised at Noncompliance with tuberculosis in prisons: A Manual for programme Santoord. Here they were mostly treatment by patients at a tuberculosis managers. Geneva: WHO. dissatisfied with being far from home, and AIDS reference hospital in having little privacy and limited Midwestern Brazil. Brazilian Journal of BOULLE, A; BLECHER, M & BURN, A opportunity to either express their culture Infectious Diseases, 6(2): 63-73. 2000: Hospital restructuring. (In: Health or to engage in recreation during long Systems Trust Ed. 2000: South African months of “incarceration”. While FOUCAULT, M 1971: Madness and Health Review, 2000. Durban: Health Santoord patients appreciated the civilization: A history of insanity in the Systems Trust: pp 231 - 250). availability of the drugs they required and age of reason. New York: Pantheon the fact that their health improved, they Books. BURMAN, WJ; RIETMEIJER, CA & also strongly protested against the poor SHARBARO, JA 1997: Noncompliance health care that they experienced at this GOFFMAN, E 1963: Stigma: Notes on with directly observed therapy for hospital. the management of spoiled identity. tuberculosis. Chest, 111(5): 1168-1173. Englewood Cliffs: Penguin Books. While cautioning to “isolate such beds COCKERHAM, WC 2004: Medical from others”, a previous paper of the Joint HEUNIS, JC 2002a: The hospitalisation sociology. Upper Saddle River: Pearson Free State TB Research Project of TB patients in the Free State: Prentice Hall. recommended that public district preliminary findings of a hospital patient hospitals should reserve beds for TB survey, October-November 2000. DEPARTMENT OF HEALTH 2002: cases (Heunis 2005: 251). The current (Tuberculosis Strategic Planning Session South African Demographic and Health study’s research question, How for DC 17 organised by the Department Survey, 1998. Pretoria: Government appropriate was the closing o f a hospital of Health: 22 January: Pelonomi Hospital: Publishers. that contributed to TB control for half a Bloemfontein). century’?, and its attempt to answer this DIMANT, T 2003: Business and from the patient’s perspective, begets the HEUNIS, JC 2002b: Hospitalisation for employment. (In: Kane-Berman, J; same answer - rather public district tuberculosis in the Free State: focus on Henderson, J & Morton, L Eds. 2003: hospitals than Santoord Hospital. South Africa Survey, 2002/2003. the patient experience. (Joint TB Johannesburg: South African Institute of Research Project Feedback Workshops Acknowledgements Race Relations, pp 139 - 223). organised by the Centre for Health Systems Research & Development: 22- Sincere gratitude is acknowledged to the 30 May: Department of Health: following institutions for generous DOHERTY, J; KRAUS, R & HERBST, Sasolburg, Bethlehem, Welkom, support of the Joint research project on K 1996: Health facilities. South African Harrismith, Bloemfontein and tuberculosis control in the Free State: Health Review, 1996. (In: Health Trompsburg). from infection to cure: On the Belgian Systems Trust Ed. 1998: South African side, the Science, Innovation and Media Health Review, 1998. Durban: Health Department of the Ministry of the Flemish Systems Trust, pp 65-72). HEUNIS, JC 2002c: Hospitalisation of Community; the Prince Leopold Institute tuberculosis patients. (Seminar organised of Tropical Medicine; and the University EDVVARDS-MILLER, J; PICK, W; by the Department of Community Health: of Antwerp. On the South African side, CONWAY, S; FISHER, B; 2 August: University of the Free State: the former South African Department of KGOSIDINTSI, N; KOWO, H & Bloemfontein). ARTS, Culture, Science and Technology; WEINER, R 1998: Measuring quality of the Medical Research Council of South care in South African clinics and HEUNIS, JC 2002d: Hospitalisation for Africa; the National Research hospitals. (In: Health Systems Trust Ed. tuberculosis: reflections on policy, Foundation of South Africa; and the 1998: South African Health Review, 1998. poverty and the patient. (Seminar on Anglo American Chairman’s Fund. We Durban: Health Systems Trust, pp 157 - Tuberculosis in the Free State organised are also grateful to Dr. Z. Matebcsi, Mr. I. 192). by the University of Antwerp: 3 August: Itumeleng and Me. D. Molehe for Antwerp, Belgium). conducting the interviews. Finally, we are FARMER, P 1997: Social scientists and indebted to the Free State Department of the new tuberculosis. Social Science & HEUNIS, JC 2002e: Tuberculosis Health and the South African National Medicine, 44:347 - 358. control at Free State hospitals: policy and 12 Curationis March 2007 practice. (Biennial International The International Journal of Tuberculosis GRAEVE, D 2003: An economic Congress on Health and Society in and Lung Disease. 3(7): 553 - 560. analysis of TB in the Free State. Europe organised by the European (Conference organised by the Centre for Society for Health and Medical INPATIENT CARE TEAM 2003: Health Systems Research & Sociology: 28-31 August: Groningen, The Interviews on 31 October 2003 with two Development: 11-12 November 2003: Netherlands). representatives from the National University of the Free State: Department of Health’s Inpatient Care Bloemfontein). HEUNIS, JC 2002f: Hospitalisation for Team regarding SANTA and Lifecare tuberculosis in the Free State, South hospitals. MORRIS, G 2001: Improving quality of Africa: health systems policy and services, (in: Health Systems Trust Ed. practice and the patient experience. JANSE VAN RENSBURG- 2001: South African Health Review, 2001. (Third European Congress on Tropical BONTHUYZEN, E 2005: Staff capacity Durban: Health Systems Trust, pp 175 - Medicine and International Health and resources at nine Free State clinics: 186). organised by the Federation of the shortcomings in the TB programme. Acta European Societies of Tropical Medicine Academica Supplementum. 2005( 1): 192 NÁPOLES-SPRINGER, AM; and International Health (FESTMIH): 8- - 220. SANTO YO, J; HOUSTON, K; PEREZ- 11 September: Lisbon, Portugal). STABLE, EJ & STEWART, AL 2005: KELLY, P 1999: Isolation and stigma: the Patients’ perceptions of cultural factors HEUNIS, JC 2003: The role of the public experience of patients with active affecting the quality of their medical district hospital in TB control. tuberculosis Journal of Community encounters. Health Expectations. 8 :4 - (Conference organised by the Centre for Health Nursing. 16(4): 233 - 241. 17. Health Systems Research & Development: 11-12 November: 2003: KIMERLING, ME 2000: The Russian NEUMAN, WL 2000: Social research University of the Free State: equation: An evolving paradigm in methods: qualitative and quantitative Bloemfontein). tuberculosis control. The International approaches. Boston: Allyn and Bacon. Journal of Tuberculosis and Lung HEUNIS, JC 2004a: Hospitalisation for Disease, 4( 12): S 160- S 170. PACKARD, RM 1992: Industrialization, TB: the emerging role of the public district rural poverty, and tuberculosis in South hospital in the Free State. (World TB Day KIRK, P 2001: Santa head office faces Africa, 1850-1950. (in: Feierman, S & Commemorative Workshop organised by closure. Mail & Guardian. 23 March 2001: Janzen, JM Eds. 1992: The social basis of the Prince Leopold Institute of Tropical 3. health and healing in Africa. Berkeley: Medicine: 5 March 2004: Antwerp, University of California Press, pp 43 -105). Belgium). LIEFOOGHE, R; MICHIELS,N; HABIB, S; MORAN, MB & DE MUYNCK, A PARSONS, T 1951: The social system. HEUNIS, JC 2004b: Hospitalisation for 1995: Perception and social Glencoe: The Free Press. tuberculosis in the Free State, South consequences of tuberculosis: A focus Africa. Bloemfontein: University of the group study of tuberculosis patients in PERSSON, E; GUSTAVSSON, B; Free State. (PhD Thesis). Sialkot, Pakistan. Social Science & HELLSTRÓM, A; LAPPAS, G & Medicine. 41(12): 1685-1692. HULTÉN, L 2005: Ostomy patients’ HEUNIS, JC 2004c: Hospitals and perceptions of quality of care. Journal of hospital reform in South Africa, (in: Van MATEBESI, SZ; MEULEMANS, H & Advanced Nursing. 49(1): 51 - 58. Rensburg, HCJ Ed- 2004: Health and TIMMERMAN, C 2005: Healthcare- health care in South Africa. Pretoria: Van seeking behaviour among clinic-based PORTAELS, F 2003: New challenges in Schaik Publishers, pp 459 - 505). tuberculosis patients. Acta Academica the global control of MDRTB. Supplementum. 2005( 1): 154-172. (Conference organised by the Centre for HEUNIS, JC 2005: Hospitalisation for Health Systems Research & TB in the Free State: opinions of health MEULEMANS, H 1999: Gezondheid, Development: 11-12 November 2003: workers and managers. Acta Academica rechi en afwijken gedrag. (in: Van Loon, University of the Free State: Supplementum. 2005( 1): 221 -253. F & Van Aeken, K Eds. 1999:60 maal recht Bloemfontein). en 1 maal wyn. Leuven: Acco, pp 519 - HEUNIS, JC & JANSE VAN 527). RADWIN L 2000: Oncology patients’ RENSBURG-BONTHUYZEN, E 2002: perceptions of quality nursing care. Preliminary findings of the Joint Free MEULEMANS, H; MORTELMANS, D; Research in Nursing & Health. 23(605): State Tuberculosis Research Project. LIEFOOGHE, R; MERTENS,P; ABKAR 179-190. (Medium Term Development Plan ZAIDI, S; FAROOQ SOLANGI, M & Meeting organised by the Free State DE MUYNCK, A 2002: The limits to RAJESWARI, R; Department of Health: 18 February 2002: patient compliance with directly BALASUBRAMANIAN, M; Bloemfontein). observed therapy for tuberculosis: A MUNIYANDI, M; GEETHARAMAN, S; socio-medical study in Pakistan. THRESA, X & VENKATESAN, P 1999: HURTIG, AK; PORTER, JDH & International Journal of Health Planning Socio-economic impact of tuberculosis OGDEN, JA 1999: Tuberculosis control and Management. 17:249 - 267. on patients and family in India. The and directly observed therapy from the International Journal of Tuberculosis and public health/human rights perspective. MEYER, K; BOOYSEN, F & DE Lung Disease. 3(10): 869 - 877. 13 Curationis March 2007 RKICHMAN, LB& HOPKINSTANNE, Hospital’s patient numbers and finances. J 2002: Time bomb: The global epidemic of multi-drug-resistant tuberculosis. New York: McGraw-Hill.

RIJBEL, AJ & G ARRO, L C 1992: Social and cultural factors in the successful control of Tuberculosis. Public Health Reports, 107:626 - 636.

SCHLUGER, N; CIOTOLI, C; COHEN, D; JOHNSON, H & ROM, WN 1995: Comprehensive tuberculosis control for patients at high risk for noncompliance. American Journal of Respiratory and Critical Care Medicine, 151: I486 -1490.

SCHNEIDER, H. & PALMER,N 2002: Getting to the truth? Researching user views of primary health care. Health Policy and Planning, 17(1): 32-41.

SINGLETON, L; TURNER, M; HASKAL, R; ETKIND, S; TRICARICO, M & NARDELL, E 1997: Long-term hospitalization for tuberculosis control: Experience with a medical-psychosocial inpatient unit. Journal of the American Medical Association. 278( 10): 838 - 842.

TURNER, B 2002: The statesman's yearbook: The politics, cultures and economies of the world. Hampshire: Palgrave Macmillan.

TVVUMASI, P.A 1996: Non-compliance with tuberculosis treatment: The Kumasi experience. Tropical Doctor, January: 43.

VAN RENSBURG, J 2000: The secretariat scene: crisis. TB and health news: SANTA, 39(7): 2.

VAN RENSBURG,HCJ; MEULEMANS, H; RIGOUTS, L; HEUNIS, JC; JANSE VAN RENSBURG, E; MATEBESI, SZ; VAN DER SPOEL, A; TIMMERMAN, C; DE GRAEVE, D; PAUWELS, L; PORTAELS, F; GRYSEELS, B & VAN HOUTTE, J 2004: Social research as an intervention tool in tuberculosis control. The International Journal of Tuberculosis and Lung Disease, 8(9): 1127 -1129.

VAN RENSBURG, HCJ; MEULEMANS, H & RIGOUTS, L 2005: Tuberculosis: the complexity of the phenomenon and the magnitude of the problem. Acta Academica Supplementum, 2005( 1): i - xv.

VAN VUUREN, RDJ 2001: Interview on 11 November 2001 with Centre Supervisor regarding Santoord 14 Curationis March 2007