See discussions, stats, and author profiles for this publication at: https://www.researchgate.net/publication/12775145 Shifting the Paradigm in Tuberculosis Control: Illustrations from India Article in The International Journal of Tuberculosis and Lung Disease · November 1999 Source: PubMed CITATIONS READS 47 126 7 authors, including: Jessica Ogden Sheela Rangan 41 PUBLICATIONS 1,634 CITATIONS 39 PUBLICATIONS 813 CITATIONS International Center for Research on Women SEE PROFILE Maharashtra Association of Anthropological S… SEE PROFILE Ruairi Fionnbarra Brugha Anthony Zwi 155 PUBLICATIONS 3,985 CITATIONS 266 PUBLICATIONS 6,622 CITATIONS Royal College of Surgeons in Ireland SEE PROFILE UNSW Australia SEE PROFILE Some of the authors of this publication are also working on these related projects: PhD - gender equity as a determinant of health View project Climate Adaptive Water Management Practices in South Asia View project All content following this page was uploaded by Ruairi Fionnbarra Brugha on 15 December 2016. The user has requested enhancement of the downloaded file. INT J TUBERC LUNG DIS 3(10):855–861 © 1999 IUATLD REVIEW ARTICLE Shifting the paradigm in tuberculosis control: illustrations from India J. Ogden,* S. Rangan,† M. Uplekar,† J. Porter,‡ R. Brugha,* A. Zwi,* D. Nyheim* * Health Policy Unit, Department of Public Health & Policy, London School of Hygiene & Tropical Medicine, London, UK, † Foundation for Research in Community Health, Worli, Mumbai, India, ‡ Department of Infectious & Tropical Diseases, London School of Hygiene & Tropical Medicine, London, UK SUMMARY Drawing on literature from India and key contributions from social science, this paper asks and attempts to answer the question ‘who is to blame for treatment failures in TB’? Some key lessons emerge: effective tuberculosis control cannot be achieved so long as the disease is considered in isolation from the social processes that maintain it, create the conditions facilitating its spread and act as barriers to care. Insights into the economic and social burdens incurred with a diagnosis of TB are essential to understand why many patients, especially the most disadvantaged, are unable to comply with treatment regimens. TB and health care interventions need to be appropriate to the health service contexts in which they are applied, and sensitive to the competing demands, needs and priorities of people’s lives. The paper argues for the need to reorient TB control pro- grammes towards enabling patients to obtain care. The problem of access emerges as central to people’s ability to obtain and maintain appropriate therapy. Examples and characteristics of successful non-governmental projects, from which policy makers, programmers and practitioners could learn, are outlined and contrasted with more rigid directly observed treatment approaches. We conclude that treatment failures are not patient failures, and that TB control programmes need to address the social dimensions of TB, and adhere to the principles of good TB care, with the same commitment that is devoted to ensuring patients follow treatment guidelines. We suggest a paradigm shift away from a focus on diseased patients towards enabling health in the community. K E Y W O R D S : tuberculosis; India; compliance; treatment seeking; access THE TECHNICAL ELEMENTS of effective tuberculosis management are well recognised: investigation of a high proportion of symptomatic patients who present to the health service (passive case-finding), high-quality sputum-based diagnosis, a regular and reliable supply of drugs and effective case-holding. However, technical excellence is not enough: programmes that do not take into account the factors that sustain the presence of tuberculosis bacilli in communities may fail to control the disease in the long term. Drawing from the vast literature on efforts to control tuberculosis in India and key contributions from the international social science literature, this paper asks the question ‘who is to blame for treatment failures in TB?’ A key lesson emerges: effective tuberculosis control cannot be achieved so long as the disease is considered in isolation from the social processes that maintain it, create the conditions conducive to its spread and act as barriers to care. Programmes need to be appropriate to health service contexts and sensitive to the competing demands, needs and priorities of people’s lives. This paper argues for the need to reorient TB control programmes away from a focus on treatment-taking and towards a commitment to enabling patients to obtain the care they need, want and deserve. We discuss the burden of tuberculosis from epidemiological, economic and social perspectives, and highlight critical issues in treatment seeking for TB symptoms. The problem of access emerges as central to people’s ability to obtain and maintain appropriate therapy, illustrated by evidence from the public and private sectors in India. Finally, we identify important lessons learned from successful non-governmental organisation (NGO) tuberculosis programmes in the Indian subcontinent; these challenge existing disease control paradigms and require a shift away from a focus on disease towards the production of health. THE BURDENS OF TUBERCULOSIS Literature highlighting the burden of tuberculosis focuses mainly on quantitative estimates, establishing the magnitude of the problem and capturing their Correspondence to: Jessica Ogden, Health Policy Unit, Department of Public Health & Policy, London School of Hygiene & Tropical Medicine, Keppel Street, London WC1E 7HT, UK. Tel: (⫹44) 171 927-2072. Fax: (⫹44) 171 637-5391; e-mail: j.ogden@lshtm.ac.uk Article submitted 28 September 1998. Final version accepted 26 April 1999. 856 The International Journal of Tuberculosis and Lung Disease readers’ attention: a third of the world’s population is infected with Mycobacterium tuberculosis; TB is the infection that causes the most deaths in the developing world, accounting for 7% of all deaths and 26% of avoidable adult deaths.1,2 However, the burden caused by disease in a community cannot be assessed and conveyed by numbers alone. As research increasingly indicates, sickness and health are produced and shaped by social and economic relations—local and global. The concept of social vulnerability, developed by researchers working on the human immunodeficiency virus (HIV) and the acquired immune-deficiency syndrome (AIDS),3,4 takes us beyond traditional epidemiological distinctions between ‘risk groups’ and the ‘general population’ towards a deepening understanding that the risks associated with infection, and its impact, transcend physiology: some populations are clearly more vulnerable than others to infection and its effects, simply because of the relative levels of poverty and disadvantage that characterise them. Based on the biomedical model, tuberculosis control strategies have been directed at the treatment of disease in individuals. This approach often ignores the social and economic contexts in which patients live, the acceptability of health services and the costs of treatment to them and their families. Reducing the social, economic and opportunity costs borne by patients will enhance their ability to access and adhere to appropriate care. Therefore, in order for TB control programmes to be effective, their focus needs to shift from disease in the individual to health in the community. Epidemiological burden The epidemiological data indicate that TB continues to be a major problem in India, despite almost 40 years of national control programmes, and that it preferentially affects the disadvantaged. The National Sample Survey showed disease prevalence to be similar across states and in urban/rural areas,5 with a national average of 4/1000 bacteriologically-positive (sputumpositive) and 16/1000 radiologically-positive (sputumnegative, X-ray positive) cases. However, pockets of high prevalence of 50/1000 have been found in the slums of Delhi and Calcutta City compared with 3/1000 for non-slum areas.6 Tuberculosis is associated with poor housing (especially in urban areas), lack of formal education, low per capita income and lack of gainful employment, all of which are more common among slum dwellers. Prevalence rates are also higher among tribal populations and among working versus non-working women,7 and are higher among males, rising with age among both sexes.5,6,8–14 Ninety-three per cent of cases are in those over 20 years, and 75% of the estimated 400 000 people who die annually of TB are in the 15–44 year age group, which indicates the high burden on the economically active sections of society. A recent study reported a case fatality rate of 10% in those who had completed treatment, which rose to 62% in those who had taken less than half of their prescribed treatment.15 However, epidemiological data, while useful at highlighting population groups at higher risk, fail to convey the full burden of TB on patients, families and communities, which is essential to understanding why control programmes have failed. Economic burden TB treatment imposes significant financial burdens on those affected, many of whom are least capable of bearing these costs, leading to personal and family indebtedness. In Pune, it was estimated that patients spent almost half their monthly income on TB treatment, leading to indebtedness in a third of them.16 The likely impact of the illness on the well being of households is evident: while a tuberculosis patient is often unable to contribute economically to the household, the costs of the illness drain its resources, leaving the family doubly impoverished. Thus TB is not only a reflection of poverty (as the epidemiological data suggest) but contributes to causing it.6 In a small study from Bombay 10 of 13 patients reported reductions in income of between 40 and 60% because of their illness and vulnerability to dismissal from work.17 A study conducted in Bombay in 1992 showed that a third of the patients interviewed spent 9% of their income solely on travel to the clinic to collect drugs.18 Economic indebtedness is also a frequent cause of therapy cessation.16,17 A 1997 study from Delhi (unpublished) has confirmed this emerging picture: TB patients spent an average of one month’s wages on initial investigation and treatment. Twentyeight per cent of the 228 working TB patients interviewed experienced persistent wage loss as a result of their disease and disability, and particularly important is that most of the 40% of patients who stopped treatment cited financial constraints. Social burden ‘Social burden’ refers to the impact TB has on individuals as members of households and communities, and highlights the constraints faced by individuals in obtaining and staying on treatment. Surprisingly little research has been done to assess social burden and much of the evidence is anecdotal. It has been suggested that in India the degree of household/family support given to TB patients is determined by their economic contribution to the household—the more they contribute, the more likely it is that the requisite resources are made available for their treatment.16,17 Household and family support in India is positively associated with treatment completion,1,19–21 as is also found elsewhere.22,23 There is a need for rigorous social science research in this area to inform and improve the effectiveness of TB programmes and policies. The roles of household support and gender effects, especially, deserve attention. Shifting the paradigm in tuberculosis control Relatively little research has been done to better understand the relationship between gender and tuberculosis. What is known from the international literature, however, is that gender appears to exert an influence at every stage: from the acquisition of infection and development of disease, through symptom recognition, delays in obtaining appropriate care, to treatment adherence and cure.24,25 Women of reproductive age progress more quickly from infection to disease, are more likely to have complications, and are less likely and able to seek and obtain care than men of the same age.24–34 In many societies, younger women have relatively junior status in their households and communities, less mobility, less autonomy and greater constraints in accessing resources for treatment than older or higher status women. Although no studies have directly researched gender differentials in experiences of stigma and TB, a number, mainly from the Indian subcontinent, indicate that gender effects are significant obstacles to women’s ability to adhere to treatment, although the evidence is largely anecdotal.16,17,19,25–27 In many South Asian cultures young women are either living in affinal households as junior daughters-in-law, or are as yet unmarried, with their families seeking marriage opportunities for them.16,17,19 The difficulties these women may face should they be known to have TB include increased likelihood of desertion, divorce or inability to marry.16,17,35 Nair et al. reported that fear of rejection by their husbands, of harassment by inlaws, of reduced chances of marriage, and of dismissal from work made some women attempt to hide their condition. These repercussions functioned as social barriers to treatment.17 This relates, at least in part, to TB being perceived in some parts of India to be hereditary,16,35 or to a belief in the polluting nature of the disease, each making marriage to someone with TB undesirable. Highlighting the economic and social burdens of TB, which disproportionately affect the most disadvantaged, does not of itself provide readymade solutions, but can guard against facile ones. SEEKING TREATMENT/ACCESSING HEALTH Knowledge and beliefs Research to understand people’s knowledge, beliefs and practices with regard to tuberculosis,19,22,36–40 has the potential to lead to improvements in patient compliance with treatment. The Indian literature indicates that patients, their families and communities often have reasonable knowledge, most believing that TB is caused by ‘germs’, malnutrition and physical exertion, and that the disease can be spread from one person to another through contact and contamination.16,17,35,41–44 Fear of the latter leads some families and communities to physically isolate patients.16 TB is also believed to result from ‘worry’,16,17 or from failing to follow certain dietary, social and cultural 857 norms, and is believed to be curable only if such norms are followed.16 Although potentially useful, this work rarely goes beyond description, overemphasises the role of beliefs, and under-estimates the importance of barriers, especially health service barriers, and the need to overcome them. Access to services Treatment seeking is mediated by the competing needs, priorities and vicissitudes of everyday life,16,35,45 and by people’s perceptions and experiences of the treatment options accessible to them. Access may be defined as easy availability (physical access) of acceptable (social access) and affordable (economic access) health care. Determinants of access can be categorised as concerned with health care seekers or with health services and providers. General public sector health services, with which TB control in India has been closely linked, are physically inaccessible to a large proportion of the population, especially in rural areas.46,47 Even where available, people often choose not to use them.16–18,44,45,48 Reasons for not utilising the government services include: dissatisfaction with treatment, distance,17,46,4,50 long waiting times,46,50 lack of medicines and lack of personal attention by health centre staff.17,46,49 Apart from this, there are several social and economic determinants which limit access to health care for patients of different social classes, ages and sexes.51–53 Upon developing symptoms suggestive of TB, a majority (60%) of patients in India, including those with limited financial security, consult private doctors.16 Reasons for this include more convenient clinic location and opening hours and the respect shown by private doctors to patients.16–18,44 Patients visit more than one source prior to getting registered and starting treatment in the public sector,16–18,54 although the reasons for this are not clearly understood. An understanding of the treatment-seeking behaviour of those who suspect they have TB, and their lack of success in obtaining effective care, points clearly to weaknesses in public sector health care: like the general health services, the TB programme has been afflicted by problems of poor coverage, implementation, functioning and quality. These shortcomings have stemmed largely from the low priority given to TB until recently (relative to other vertical programmes) and inadequate budgetary outlays.55,56 ‘Compliance’: controlling disease/controlling patients Issues of compliance lie at the interface between the social and biomedical sciences. Social science researchers, when asked to explain apparently wide variations in the compliance behaviour of patients, have focused primarily on patients’ health beliefs,20,57,58 or on the patient-provider relationship.59 The limitation of these approaches is that neither takes account of the social factors and processes which make it difficult or impos- 858 The International Journal of Tuberculosis and Lung Disease sible for patients to adhere to therapy, adopting the biomedical assumption that non-compliance equals deviance. Fundamentally, this work disregards the practical realities that frame many patients’ everyday lives, not to mention the structural inequalities and health service inadequacies,55,56 referred to earlier, that disproportionately affect disadvantaged people’s ability to comply with lengthy regimens. Sumartojo23 points out that TB treatment adherence issues are not only multi-faceted and complex, but range from characteristics of individual patients to qualities of the social and economic environment. Farmer60 concurs when he writes that in most settings where TB is prevalent, the degree to which patients are able to comply is significantly limited by forces beyond their control: “Throughout the world, those least likely to comply are those least able to comply. . . . In theory, it would be necessary to ensure full and facile access to all persons before ascribing failure to complete treatment to patient shortcomings. . . . (T)hese settings are crying out for measures to improve the quality of care, not the quality of patients.” NGO FLEXIBILITY OR RIGID DOTS In light of the evidence presented above, it is notable that, where public sector programmes may be falling short, a number of non-governmental projects in the region are achieving some success. Previously dismissed as anecdotal, and only gradually reaching the peer-reviewed literature, are examples of successful NGO projects which have achieved high cure rates in different settings. Notable successes have been documented in India and Nepal, even in the most inaccessible or difficult field conditions.61–65 An NGO in one of the most disadvantaged areas of the state of Gujarat consistently achieves cure rates of over 80 per cent. The programmes employs the part-time services of village-based female workers of the national Integrated Child Development Scheme to support treatmenttaking in the community and to take action if patients default.61 Another NGO, working in the slums of Bombay, achieves similar results through an initial intensive interaction between a social worker and the patient and family before registration for treatment, reinforced separately by a doctor and social worker at fortnightly visits to collect drugs. Neither project uses direct observation of treatment (DOT). In the hills of Nepal, an NGO project achieved 84% treatment completion rates (72% confirmed cured); drug collection was monthly because of the difficult terrain, requiring days for patients to reach a health facility and making health worker DOT impractical.63 Other NGOs in remote areas of Nepal have shown comparable results using broadly similar strategies.64,65 Operating within similar socio-cultural and economic milieux as do national TB control programmes (NTPs), why do NGO projects succeed when NTPs struggle or fail? Distinguishing factors are: the ethos of those NGOs that believe that the average patient wants to be cured of the disease and to protect family; their proximity to patients and involvement of families and communities to support patients; mechanisms in place to prevent treatment default and to retrieve those who do; awareness of the social contexts and needs of the communities they serve and flexibility in their approaches to tackling problems; a commitment to TB control, with staff motivation. Unfortunately, critical reviews examining social and operational aspects of DOTS programmes are conspicuous by their absence, even after half a decade of the DOTS strategy. A recent study by Zwarenstein et al.66 is an important exception. Though scientifically flawed, this study nevertheless indicates that direct observation itself is not the key to successful tuberculosis control. Rather, programmes should be emphasising patient support and care. Moving away from the dogma of DOTS 67,68 and towards a real breakthrough in TB control internationally will require a considerable shift in thinking and approach. Note that in the typical NGO project, instead of observing each dose in every patient—most of whom will comply if an effective and acceptable programme is in place—the energies of health workers are conserved for those who had greater difficulty adhering to therapy. Workers are thus able to concentrate their efforts on the small proportion of patients who may default, taking action to prevent this and further action if they do so. Motivating and supporting defaulters, rather than disciplining those who are already motivated and supported, also sends the right message to communities. These are valuable lessons for national programmes. Commitment to TB patients at the government level needs to be sustained and adequate resources allocated. In addition, health care workers need to be trained and empowered to carry out the activities required of them. Finally, the focus and emphasis of policy and programmes can learn from NGOs who stress care and support of patients over control and observation. CONCLUSION Much of the research into help-seeking for tuberculosis has sought to explain treatment failures through understanding the social and cultural beliefs, perceptions, attitudes and behaviours that constrain patients in their quest for therapy. Historically, sociological inquiry into tuberculosis has been initiated in an effort to improve levels of treatment adherence or ‘compliance’, the underlying assumption being that ‘patient beliefs and behaviours’ were somehow preventing them from successfully completing treatment. This work may have inadvertently contributed to the tendency among policy makers and programmers to view treatment failures as patient failures. This view Shifting the paradigm in tuberculosis control is reflected in the current control strategy recommended by the World Health Organization, which requires DOT in all cases for ensuring patient ‘compliance’. However, because patient behaviour is more a result of their limited access to TB care than of recalcitrance,60,69 it is more likely that treatment failures are, in fact, system failures. The accessibility, quality of care and costs to patients, including costs incurred in adhering to a rigid DOT regimen, may render adherence to treatment impracticable, even in those places where knowledge is good and patients are otherwise interested in seeking care in the formal biomedical system. Thus it is critical not to unduly privilege cultural and psychological explanations for patient behaviour over structural and health system factors.16,60,70 Neglecting the importance of the broader structural factors and instead placing particular emphasis on ‘cultural beliefs, perceptions and knowledge’, could reinforce the current pattern of blaming patients, drawing attention away from many of the real barriers to accessing and continuing to utilise health and TB care services, which include poverty, social and economic inequality, and gender inequalities. However, success is possible and examples exist, even in the absence of radical social transformation. It is essential for policy makers and programme managers to recognise that patients strive to get well and endeavour to complete their treatment, and yet are thwarted by the failure of the health care system to meet their needs.16,37,60 Success will be based on a shift in paradigm: a qualitative shift away from the perceived need to control patients to providing a health service and a TB programme that supports them to obtain what they and their communities most want: a cure. 7 8 9 10 11 12 13 14 15 16 17 18 Acknowledgements The authors would like to acknowledge the important research assistance provided by Dr Sudhakar Morankar and Mr Sanjay Juvekar, of Foundation for Research in Community Health (FRCH), Pune. We are also grateful for the constructive comments of the anonymous reviewer. References 1 World Bank. The World Development Report: Investing in Health. Washington DC: The World Bank, 1993. 2 Murray C J L, Styblo K, Rouillon A. 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A social science approach to strengthening India’s National Tuberculosis Programme. Indian J Tuberc 1993; 40: 61–82. Shifting the paradigm in tuberculosis control 861 RÉSUMÉ En faisant appel à la littérature provenant de l’Inde et à des contributions clé des sciences sociales, cet article pose et tente de répondre à la question “Qui est responsable des échecs du traitement en tuberculose ?”. Quelques leçons fondamentales émergent : une lutte efficace contre la tuberculose ne peut être menée indépendamment des pressions sociales qui la maintiennent, créent les conditions facilitant sa dispersion et agissent comme des barrières aux soins. Des aperçus concernant les charges économiques et sociales qu’entraîne un diagnostic de tuberculose sont nécessaires pour comprendre pourquoi de nombreux patients, et particulièrement les plus désavantagés, sont incapables d’adhérer aux régimes de traitement. La tuberculose et les interventions de soins de santé doivent être appropriées au contexte des services de santé dans lesquels elles sont appliquées et répondre aux exigences, nécessités et priorités compétitives dans la vie des gens. Cet article plaide pour la nécessité de réorienter les programmes de lutte contre la tuberculose, de manière à permettre aux patients d’accéder aux soins. Le problème d’accès apparaît comme central pour donner aux gens la possibilité d’obtenir et de poursuivre une thérapie appropriée. Les exemples et les caractéristiques de projets non gouvernementaux couronnés de succès sont bien définis, et les décideurs, les programmeurs et les praticiens pourraient s’en inspirer ; ils contrastent avec les approches plus rigides du traitement directement supervisé. Nous concluons que les échecs de traitement ne sont pas des échecs des patients et que les programmes de lutte contre la tuberculose doivent tenir compte des dimensions sociales de la maladie et adhérer aux principes d’une bonne prise en charge de la tuberculose, avec un engagement pareil à celui qu’ils prennent à veiller à ce que les patients suivent les directives du traitement. Nous suggérons une déplacement du paradigme depuis une focalisation sur les patients malades vers une approche permettant la santé dans la collectivité. RESUMEN En base a las publicaciones de la India y a las contribuciones de las ciencias sociales, este trabajo plantea y trata de responder a la pregunta : “¿A quién culpar por los fracasos del tratamiento de la tuberculosis ?”. Surgen algunas lecciones básicas : no se puede alcanzar un control efectivo de la tuberculosis mientras la enfermedad se considere aislada del proceso social que la mantiene, que crea las condiciones que facilitan su diseminación y que actúa como barrera para su curación. La comprensión de las causas económicas y sociales involucradas en el diagnóstico de la tuberculosis es esencial para entender por qué muchos pacientes, especialmente los más necesitados, son incapaces de cumplir con el tratamiento. Las intervenciones en tuberculosis y en atención de la salud deben ser adaptadas a los contextos de los servicios sanitarios en los cuales son aplicadas y sensibles a las demandas, necesidades y prioridades competitivas de la vida de la gente. Este trabajo discute la necesidad de reorientar los programas de control de la tuberculosis permitiendo a los pacientes el acceso a la atención médica. El problema del acceso resulta central en la capacidad del paciente para obtener y mantener un tratamiento apropiado. Ejemplos y características de proyectos exitosos no gubernamentales, de los cuales pueden aprender los conductores de políticas, programadores y médicos, son delineados en este trabajo y contrastan con estrategias más rígidas de tratamiento directamente observado. Concluimos que los fracasos del tratamiento no son fracasos del paciente y que los programas de control de la tuberculosis deben enfrentar las dimensiones sociales de ésta, y adherir a los principios de la atención correcta de la tuberculosis con el mismo compromiso que lleva a asegurar que los pacientes siguen las normas del tratamiento. Sugerimos un desplazamiento del enfoque sobre el enfermo hacia la obtención de la salud en la comunidad.