An ethnographic study of barriers to and enabling factors for tuberculosis treatment adherence in Timor Leste

INT J TUBERC LUNG DIS 12(5):532 537 2008 The Union An ethnographic study of barriers to and enabling factors for tuberculosis treatment adherence in Timor Leste N. Martins,* J. Grace,* P. M. Kelly* # * Menzies School of Health Research, Darwin, Institute of Advanced Studies, Charles Darwin University, Darwin, Northern Territory, Australia; Ministry of Health, Dili, Faculdade Saude Publica, Universidade Da Paz, Dili, Timor Leste; National Drug Research Institute, Curtin University, Perth, Western Australia, # National Centre for Epidemiology & Population Health, The Australian National University College of Medicine and Health Sciences, Canberra, Australian Capital Territory, Australia SUMMARY BACKGROUND: Tuberculosis (TB) is a major public health problem in Timor Leste; treatment adherence was identified by the National TB Control Programme (NTP) as an impediment to TB control. OBJECTIVE: To identify barriers to and enabling factors for the successful implementation of the DOTS strategy in Timor Leste. METHOD: Qualitative research was carried out in the two districts (one rural and one urban) with the lowest treatment completion rates. Semi-structured interviews and focus group discussions were conducted with patients, health workers and community members in eight villages. RESULT: Good knowledge of TB, including a correct understanding of how it is cured, together with the provision of incentives, were important factors contributing to treatment completion. Defaulting patients and community members had less knowledge of TB. TB nurses had a good understanding of, and a high level of commitment to implementing the DOTS strategy. Obstacles to treatment completion included preference for traditional medicine, economic difficulties and geographic remoteness. CONCLUSION: Local cultural practices and knowledge as well as socio-economic factors contribute to less than optimal adherence to TB treatment. This study has assisted Timor Leste s NTP in modifying its DOTS expansion strategies to overcome barriers to treatment completion. KEY WORDS: tuberculosis; Timor Leste; treatment adherence; qualitative research; traditional health beliefs TUBERCULOSIS (TB) remains a major public health problem despite over 10 years of the World Health Organization (WHO) strategy known as DOTS. 1 Although TB incidence rates appear to have reached a plateau, only 26 countries had reached the WHO targets of 70% of incident cases detected and 85% of patients cured by the end of 2005. 1 A significant challenge for DOTS programmes in many developing countries is ensuring that the daily supervision of treatment (directly observed treatment, DOT) actually occurs. 2 Although it has its critics, it is generally accepted that DOT, adapted to patient needs and the availability of trained health workers, is the best method of avoiding treatment interruption. 3 Treatment completion continues to be one of the greatest challenges to TB control worldwide. 4 However, there is also evidence that local strategies and decentralisation of TB services can improve treatment success rates. 5,6 A recent review of qualitative research pertaining to TB treatment adherence found that patients decisions to cease TB treatment were influenced by a complex interaction of structural, personal and health service factors operating within a societal context. 7 It is important for National TB Programmes (NTPs) to perform locally based studies to investigate possible impediments to treatment completion and to find local solutions to improve DOTS performance. 8 The present study was undertaken with two objectives: to identify barriers to TB treatment adherence and to identify factors that could help TB patients complete their treatment. SETTING Timor Leste is a newly independent country, with a population of a little over one million people living in 13 districts. 9 The majority of the population lives in rural areas as subsistence farmers and 42% of the population lives below the poverty line, with an estimated adult literacy rate of 60%. 9 TB is a major public health problem. The Timor Leste NTP was established in 2000 and has achieved impressive results in terms of success rates and geographic coverage. 6 The two sites for the study were selected to reflect 1) different levels of accessibility of TB services; and Correspondence to: Paul M Kelly, National Centre for Epidemiology and Population Health, College of Medicine & Health Science, Australian National University, Canberra, ACT 0200, Australia. Tel: ( 61) 02 6125 5609. Fax: ( 61) 02 6125 0740. e-mail: paul.kelly@anu.edu.au Article submitted 10 September 2007. Final version accepted 17 January 2008.

TB treatment adherence in Timor Leste 533 Table 1 The demographic, geographic, ethnic and TB health services profile of the study districts Special features Dili The capital city, main sea and air port, centre of government administration and economic activity Ermera Main coffee-growing area, other limited economic and government activities Population* 137 959, high population density 103 169, low population density Ethnic background Multi-ethnic Mainly mambae people, with kemak and bunag minority Location and topography Central north coastal area, low land. Hot, humid, less rain during the wet season 58 km south-west of Dili, high land. Cold, heavy rains during the wet season TB notification rate, 2004 (all cases) 1353/100 000 population 158/100 000 population TB health services 4 diagnostic centres 5 DOT centers 1 diagnostic centre 6 DOT centres Average time to diagnostic and treatment centre 30 45 min walk 120 min walk * Source: Ministry of Health, Timor Leste (2003 estimated district populations). Source: National TB Programme, Timor Leste. 2) the highest default rates in the country. In Dili (urban) patients have good access to TB services, while in Ermera (rural) access is limited due to the mountainous terrain, dispersed population and the lack of health facilities (Table 1). Unemployment is high in both districts; employment in Ermera is largely restricted to agricultural work and trading. While there are more diverse opportunities in education and employment and better infrastructure in Dili, unemployment remains very high across the social spectrum. METHODS Routinely collected NTP data were examined to assess case holding rates in all the districts of Timor Leste. Within Ermera District, the villages from which the highest number of defaulters had originated were selected for particular attention. In these selected sites, all TB nurses and a purposive selection of defaulting patients (who had ceased treatment for 2 months) and patients who completed treatment during 2003 were invited to participate in this study. In addition, community members, including members of youth and women s groups, traditional leaders and village heads, were invited to take part in focus group discussions. The principal author, NM, is indigenous to the district of Ermera and has lived in Dili for many years. He was the founding director of the NTP and has strong professional, social and cultural ties with both districts. Two local research assistants, one from each district, with previous experience in qualitative research methods and fluent in local dialects, were recruited and trained by NM. The field researchers had the necessary knowledge and skills to undertake a rapid anthropological study using standard ethnographic methods. They had the advantage of being both insiders and outsiders. As insiders, they were able to communicate fluently with the participants and understood local social and cultural nuances. The team s outsider status was due to their education and training in medicine and research methods, an educational background that was not shared by the participants in this study. The researchers began their fieldwork with participant observation, visiting TB clinics, patients houses and traditional sacred places. Fieldwork took place over a 3-month period from April to June 2004. Twenty-eight in-depth interviews with patients and TB nurses and seven focus group discussions with community members (12 per group) were conducted. Attention was given to ensuring representativeness in terms of sex and age. Standardised, open-ended interview schedules were developed (Table 2). Interviews were tape recorded and handwritten notes were taken, and were transcribed in detail as soon as possible afterwards by each of the research assistants and checked by Table 2 Examples of interview and focus group discussion questions (English translations of questions asked in appropriate local languages) 1 In-depth interview: patients (treatment completers and defaulters) Do you think TB can be cured? If so, when someone has TB where should she/he go to be diagnosed and treated? Where do they actually go? We have heard that some people stop their treatment due to some specific reasons? Would you like to explain it to us? Did you hear any messages or information on TB before you got TB? Did the health workers provide you with enough information when you enrolled for treatment? 2 In-depth interview: health workers We see many patients still default from TB treatment at your clinic. Could you explain the reasons behind this phenomenon? What measures should be taken to ensure that patients comply with treatment in your workplace? What are the barriers that prevent the successful implementation of those measures? With regard to your current role, what contributions do you feel you are making to improve the DOTS strategy in your workplace and in your community/local area? 3 In-depth interview/ focus group discussion: community members Could you explain to us, in your opinion, what is the definition of TB? How is it transmitted? What is the cause of TB? Do you think there are other alternatives for TB treatment? For example, traditional medicine, etc? In your opinion, what media should be used to disseminate TB information to the community, especially in your village/location?

534 The International Journal of Tuberculosis and Lung Disease Table 3 Barriers and factors enabling completion of tuberculosis treatment Reasons for* Dili, urban Ermera, rural Summary of main categories Default Completion Feel better Transport costs Disease became severe Busy with school Knowledge of the disease and strong willingness to be cured Symptomatic improvement Satisfaction with clinical services Feel better Taking traditional medicine (instead of TB treatment) Living far from TB treatment centre Transport costs Could not walk Busy with work No symptomatic improvement Knowledge of the disease and strong willingness to be cured Received food supplement Followed nurse s instruction Satisfied with clinical services Symptomatic improvement 1 Symptomatic improvement 2 Economic and geographical barriers 3 Worsening of patients condition 4 Interfering with important daily activities 1 Knowledge about TB treatment 2 Food incentives 3 Symptomatic improvement 4 Good patient/clinic staff relations * Themes are listed in order of importance as stated by interviewees and focus group participants. Top four themes combining urban and rural participants. TB tuberculosis. NM. Any inconsistencies identified were addressed by reviewing notes and recordings, and by referral to interviewees. Triangulation was achieved by the standard method of combining multiple observations, theories, methods and data sources. 10 The data were analysed by NM using content analysis to compare differences between the responses of the two categories of patients (defaulters and completers), TB nurses and community members. Key categories that emerged from the data were counted and recorded. The data were then coded, focusing on general findings that elucidated the relationship between the key reasons identified. The results of the preliminary data analysis were critically assessed by JG (medical anthropologist) and PK (public health physician/tb specialist). Their recommendations informed the revision of the analysis and the final presentation of the findings. Ethical clearance was granted by the Human Research Ethics Committee of the Charles Darwin University, Darwin, Australia, and by the Minister for Health, Timor Leste. All participants provided written informed consent. RESULTS Treatment defaulters and community members possess low levels of knowledge about TB compared to patients who complete treatment. Rapid symptomatic improvement was both a barrier and an enabler to treatment completion, with patients either interpreting the improvement as meaning they were cured (and thus defaulted), or knowing they were getting better and wanting to complete the treatment until they were cured. Various economic, geographic and health system issues also had an important influence on treatment adherence (Table 3). TB health beliefs Local descriptions of TB symptoms are summarised in Table 4. Many participants associated TB with mear or muta ran (haemoptysis), and regarded this symptom as indicating a very serious condition that required urgent intervention. However, people held different perceptions of the cause and appropriate treatment for the condition. Most participants understood the biomedical explanation of the causation of TB and accepted medical treatment. A few regarded mear ran as an inherited disease which they believed occurred because there had been a killing in their family tree : this is a major reason for the stigma surrounding the disease. For example, there is a killing inside the family, even though it is in the war such as in 1975, when we killed one of our relatives such as [an] uncle, brother or sister, etc.... we will get the blood (muta ran) one day in our life. This might not directly affect the Table 4 Local term Local terms associated with tuberculosis symptoms Modern symptoms definition Causes Treatment options Mear mutin Dry cough Excessive cigarette smoking Cough medicine or traditional remedies Mear tasak Cough with sputum Excessive cigarette smoking Cough medicine or traditional remedies Germs Mear/muta ran Haemoptysis Family sins Germs Traditional ceremony (sakit ain) Modern treatment Paru-paru basah Pleural effusion Sleeping on wet floors/humidity Modern treatment Hirus matan moras Chest pain Lifting heavy weights/heavy work Modern medicine or traditional remedies

TB treatment adherence in Timor Leste 535 murderer, but for sure it will happen to one of his/her descendents. (community member, Ermera) Some of those interviewed in Ermera believed that modern medicine could not work unless the ritual ceremony, called sakit ain iha mota, was performed by a traditional priest (kuku). For others, traditional medicine was seen as the only appropriate treatment. This was therefore a common reason for defaulting in this rural district. When I first got this disease, I went to the clinic for treatment and after 2 weeks, I realised my condition did not improve. Then the nurse asked me to stay there for 8 months and I refused. I have a cousin who had previously suffered from the same disease and recovered well by taking traditional medicine. (defaulter, Ermera) The use of traditional treatment was widely reported by community members in both districts, and participation in traditional ceremonies designed to treat mear ran was observed by the research team. Many defaulters reported stopping treatment because of symptomatic improvement after a few weeks, which they interpreted as their being cured. TB nurses also recognised this phenomenon, which they attributed to a low level of understanding. In contrast to the defaulters, treatment completers reported symptomatic improvement as a factor that encouraged them to complete their treatment, demonstrating an understanding that while feeling better, they were not yet cured. Access to quality TB services Some patients said they were forced to discontinue treatment because their condition had deteriorated. In both Dili and Ermera, some patients were unable to visit the clinic every day because they could not walk. It is rare for a TB health worker to visit patients homes to deliver treatment. Nurses argue that it would be difficult to visit those who default because most of them do not provide accurate addresses (Dili) or they live too far away from the clinic (Ermera). Interference with their ability to meet their daily obligations, such as working and/or attending school, was another reason given by patients for defaulting. The restricted hours of the clinic and the long wait to receive treatment were a disincentive for patients. Financial disincentives included loss of income as well as the direct transport costs involved in attending the clinic. This was a frustrating issue for TB nurses, and was raised frequently by community members. We said transportation because each time patients visit the clinic, they have to pay a return cost for transportation and when they get there, they were only allowed to swallow drugs in front of the nurse. And then, the patients were asked to return the next day for the same reason. (community member, Ermera) The reimbursement of transport costs and the provision of supplementary food were important enabling factors identified by completers in Ermera. TB nurses possessed good knowledge about TB and DOTS and were highly committed to their work. Many patients were satisfied with the current TB services in their local clinic. Some community members argued that nurses in some TB centres were not polite and/or were not doing their jobs properly. However, among those who completed treatment, some patients had done so because they were following instructions from the TB nurse and good patient-clinic staff relations were identified as an incentive. Observation of the interaction between patients and staff during visits to clinics during fieldwork confirmed this in the majority of cases. DISCUSSION This first ethnographic study on TB in Timor Leste has identified important barriers and enabling factors for treatment adherence. The main issues are knowledge and beliefs about TB, barriers to accessing quality health care and the value of incentives. Particular issues of importance to the specific local contexts in Timor Leste were also found. This study reveals the importance of strengthening health education to increase community awareness and knowledge about TB to address local beliefs. Numerous other studies on TB around the world have identified the lack of understanding about the cause and treatment of TB to be a pivotal issue, 11 23 and one study in rural Vietnam similarly identified the belief that TB is hereditary and thereby stigmatic. 24 Clearly the fact that some patients discontinued treatment intentionally due to the false perception that they had been cured when their symptoms improved, could be addressed by improving their understanding of the treatment process. 8,13,15,20,22,23,25 28 Understanding patients beliefs, reflected in the terms they use for TB, can be very helpful in finding ways to overcome misunderstandings that deter patients from completing treatment. 11 These will vary from region to region, even in a small country such as Timor Leste, which is why it is important that studies such as this identify them. Beyond people s knowledge and beliefs about TB, other factors clearly contribute to the decisions patients take. For indigenous Bolivians, non-adherence to treatment was not due to cultural barriers (traditional beliefs and/or poor communication between doctors and patients), but to the social dimensions of health care delivery in marginalised populations. 29 People may understand the disease process, yet not be in a position to easily access treatment. At the same time, local beliefs about TB are not necessarily a deterrent to seeking and completing treatment. In Haiti, patients aetiological beliefs do not predict their adherence to chemotherapy. 30 In this study, we found that, regardless of their knowledge and beliefs, factors such as the cost of transport or difficulty of accessing treatment and

536 The International Journal of Tuberculosis and Lung Disease time away from work or school were important determinants in people choosing to discontinue treatment. Access to quality health care is key to addressing poor adherence to TB treatment. In studies in other countries, patients have cited inconvenient clinic times, ethnic discrimination and prior maltreatment by health care services as the major reasons for nonadherence. 8,13 15,25,27 29 Other studies reported that having a positive experience with the health system enhanced TB treatment adherence. 15,16,26 In this study, most patients were positive about their experience with clinic staff, and, regardless of their indigenous beliefs about TB, were willing to comply with treatment because they trusted them and followed their instructions. The use of incentives such as reimbursement of transport costs and the provision of supplementary food are worthy of consideration. Receiving a food supplement was identified in this study as a positive factor in completing treatment by patients in Ermera. Monetary and non-monetary incentives have been effective in improving adherence in a number of settings. 31 33 Decentralising DOTS services to improve access to TB treatment, in particular for the rural poor, has also been suggested. 22 In Timor Leste, issues of economic difficulties and geographical remoteness are being resolved by strengthening previous strategies such as alburgues (hostels) to accommodate patients near clinics for the duration of their treatment and offering treatment at satellite/mobile clinics, with training of more community workers. 6 In addition, the Ministry of Health is leading the way in decentralising government services and increasing community involvement in planning and delivery through their integrated community health service, with TB services as one of the major components of this plan. CONCLUSIONS Local cultural beliefs, socio-economic obstacles and the health services inability to provide patients with easy access to quality services contribute to non-adherence to TB treatment. This study has assisted the NTP in Timor Leste to modify DOTS expansion strategies to overcome some of the treatment completion barriers. By highlighting the importance of listening to the community and its concerns, community involvement in the programme has been encouraged. There are now regular meetings with and involvement of community groups in identifying possible TB patients and assisting them during treatment. Further research is needed to examine the local barriers and to inform the development of locally based strategies in other districts, in order to improve the treatment completion rate throughout Timor Leste. Acknowledgements The authors thank the participants, research assistants, the Minister for Health, the NTP Director and staff for their support. 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RÉSUMÉ CONTEXTE : La tuberculose (TB) est un problème majeur de santé publique à Timor Leste ; les problèmes d adhésion thérapeutique ont été identifiés par le Programme National de Lutte contre la Tuberculose (PNT) comme un obstacle à la lutte contre la TB. OBJECTIF : Identifier les barrières et les facteurs facilitateurs d une mise en œuvre couronnée de succès de la stratégie DOTS à Timor Leste. MÉTHODE : Il s agit d une recherche qualitative menée dans deux districts (un rural et un urbain) où les taux d achèvement du traitement étaient les plus bas. Des interviews semi-structurées et des discussions de groupe «focus» ont été menées avec les patients, les travailleurs de santé et les membres de la collectivité dans huit villages. RÉSULTAT : Une bonne connaissance de la TB, comportant une compréhension correcte de la manière de guérir, ainsi que la distribution d incitants se sont avérés des facteurs importants pour aider les patients à achever leur traitement TB. Les patients perdus de vue et les membres de la collectivité ont une moindre connaissance de la TB. Les infirmières TB comprennent bien la stratégie DOTS et sont très engagées dans sa mise en œuvre. Les obstacles à l achèvement du traitement TB ont comporté la préférence pour la médecine traditionnelle, les difficultés économiques et l éloignement géographique. CONCLUSION : Les pratiques culturelles locales et les facteurs de connaissance ainsi que des facteurs socioéconomiques ont contribué à une adhésion moins qu optimale au traitement TB. Cette étude a aidé le PNT de Timor Leste à modifier les stratégies d extension du DOTS pour surmonter les barrières qui empêchent les patients d achever leur traitement. RESUMEN MARCO DE REFERENCIA : La tuberculosis (TB) representa un importante problema de salud pública en Timor Leste ; el Programa Nacional de Tuberculosis (PNT) determinó que el cumplimiento terapéutico constituye un impedimento al control de la TB. OBJETIVO : Detectar los obstáculos y los factores facilitadores de la ejecución exitosa de la estrategia DOTS en Timor Leste. MÉTODO : Se llevó a cabo una investigación cualitativa en los dos distritos (uno rural y otro urbano) con las tasas más bajas de compleción del tratamiento. Se realizaron entrevistas semiestructuradas y grupos de enfoque con pacientes, trabajadores de la salud y miembros de la comunidad en ocho pueblos. RESULTADOS : Se observó que un buen conocimiento de la TB, incluida una comprensión correcta de cómo se cura, y la provisión de incentivos constituyen factores importantes de ayuda a los pacientes a completar su tratamiento antituberculoso. Los pacientes que abandonan y los miembros de la comunidad poseen menos conocimientos sobre la enfermedad. El personal de enfermería encargado de TB posee un buen conocimiento de DOTS y un alto grado de compromiso en su ejecución. Entre los obstáculos a la compleción del tratamiento antituberculoso se encontraron la preferencia por la medicina tradicional, las dificultades económicas y el aislamiento geográfico. CONCLUSIÓN : Las prácticas culturales locales, los conocimientos sobre la enfermedad y los factores económicos son elementos que predisponen a un deficiente cumplimiento terapéutico. Con los aportes del presente estudio, el PNT de Timor Leste ha modificado las estrategias de expansión de DOTS, con el fin de superar las barreras que impiden a los pacientes completar el tratamiento.