AccessingTB Services in DistrictTribal a Accessing TB Services in a Tribal District The Malkangiri Project, Orissa The Malkangiri Project, Orissa DANTB DANTB Accessing TB Services in a Tribal District The Malkangiri Project, Orissa Edited by Renu Addlakha and Jens Seeberg DANTB Acknowledgements The Malkangiri intervention project is the product of the combined efforts of a large number of people who worked together at different stages of the process. It is impossible to mention all, and to those who have been unknowingly or for lack of space been left out, I express my gratitude – including those, who years ago came up with the idea to develop a pictorial treatment card for neo/non-literate DOT Providers in tribal areas of Orissa. The intervention started with the teams involved in the baseline studies in 2004, whose principal investigators are all authors in this volume; DTOs from all tribal districts of Orissa took part in a workshop to discuss and develop the intervention in December 2004. The core group who initially met to develop the intervention consisted of Dr B. Mohanty, CDMO (Malkangiri), Dr. R.P.Mohahatra DTO (Malkangiri), S.Mohanty (LEPRA, Bhubaneswar) and Gopal Rao, STS (KORALEP), Tushar Ray, Santa Raye and G. Mallick, DANTB. The two NGOs, LEPRA India and Asha Kiran contributed to and supported the intervention in important ways throughout the process. Collector and CDMO, Malkangiri, graced the occasion of launching the intervention on 31 March 2005. G.Mallick, Sabitri Rout and Aruna Bhattacharya, DANTB, who traveled on many occasions to support the initial process and the substantial training that was undertaken; Gopal Rao, STS (KORALEP), again, for his important contribution in the training of tribal area supervisors and sputum collection centre managers; the pharmacists and volunteers, who gradually make diagnostic services available through the sputum collection centres; a special thanks also to Santa Raye and Dr Mania, SCB Medical College, Cuttack, who collaborated to develop and conduct “culture and communication sensitization workshops” for health staff in Malkangiri district, and Arun K. Nayak, DANTB, who subsequently assisted in TOT for STSs from other tribal districts; to Dr. Naik, DANTB, who provided important input for the development of training materials for this training; the STS, medical officers and laboratory technicians of the Microscopy Centres of Malkangiri, who increasingly appreciate the support to RNTCP provided iii Acknowledgements through the intervention. Hundreds of community DOT providers were trained in the difficult-to-access tribal parts of the intervention area by Suresh Dungri, S.K.Ojha, Anand Charki, N. Pravu (Tribal Area Supervisors), A. Kumar Tripathy, STS, Dr. Khora MO (PHC), Gopal Rao, N. Murti, and Appal Naidu, KORALEP, and Iren Di Silva, Sabitri Rout, G. Mallick and A. Bhattacharya, DANTB. A very warm expression of thanks, admiration and respect goes to the community DOT Providers and especially to the Tribal Area Supervisors, Suresh Dungri, S.K.Ojha, Anand Charki, and N. Pravu, who worked tirelessly in the selection and training of and supervisory support to the community DOT Providers in the difficult-to-access areas of Malkangiri, where DOTS could not reach before they were involved. An expression of gratitude goes also Director, Health Services, and State TB Cell, Government of Orissa, who supported the development of this intervention throughout. In important ways, in the context of the Government of India Tribal Action Plan for RNTCP, they will also be the key for its sustainability. Jens Seeberg HSR Advisor iv Accessing TB Services in a Tribal District Contents Acknowledgements iii Abbreviations vii Introduction 1 Part 1: The Model 11 1. The Malkangiri model for community DOTS programme in tribal areas 13 Part 2: Baseline Studies 35 2. Access to health services in the Cut-off area of Malkangiri district 37 3. Overcoming social distance: Interactions between tribal TB patients and non-tribal providers 59 4. Functioning of DOT providers in Malkangiri district 71 5. Health status of tribal population in an unreached area of Malkangiri district 105 Part 3: The Malkangiri Intervention 131 6. Implementing a community DOTS intervention in Malkangiri district 133 7. Evaluation of community DOTS intervention in Malkangiri district 155 Annexure: Training Module for Community DOT Providers Using Pictorial Treatment Card 191 Abbreviations ADMO Assistant District Medical Officer AFB Acid fast bacilli ANM Auxiliary Nurse Midwife ARI Acute respiratory infection BDO Block Development Officer BEE Block Extension Educator BMI Body mass index BPL Below poverty line CBO Community-based Organization CDMO Chief District Medical Officer CHC Community Health Centre CDP Community DOT provider CDPO Child Development Project Officer CVA Cerebro-vascular accident DANTB Danish Assistance to the Revised National Tuberculosis Control Programme Danida Danish International Development Assistance DDC Drug Distribution Centre DOTS Directly observed treatment, short-course DP DOT provider DTO District Tuberculosis Officer GOO Government of Orissa Gr. Grade Hb. Haemoglobin HDI Health Development Initiative HSR Health systems research Ht Height ICDS Integrated Child Development Services IEC Information, education and communication JGUS Jadheswar Grama Unayana Samiti LHV Lady Health Visitor vii Abbreviations LRTI Lower respiratory tract infection LT Laboratory Technician MC Microscopy Centre MHU Mobile Health Unit MO Medical Officer MO-TU Medical Officer-Tuberculosis Unit MP Malaria parasite MPHW Multipurpose Health Worker NAC Notified Area Council NCDS Nabakrushna Choudhury Centre for Development Studies NGO Non-governmental organization NLDP Non/Neo-Literate DOT Provider NTP National Tuberculosis Programme OBC Other Backward Classes ORS Oral rehydration solution PHC Primary Health Centre PHI Peripheral health institution PRI Panchayati raj institution RMP Registered medical practitioner RNTCP Revised National Tuberculosis Control Programme RSC Resettlement colony SC Scheduled Caste SCC Sputum Collection Centre SHC Subsidiary Health Centre SHG Self-help group ST Scheduled Tribe STLS Senior Tuberculosis Laboratory Supervisor STS Senior Treatment Supervisor TAS Tribal Area Supervisor TB Tuberculosis TBA Traditional (Trained) Birth Attendant URTI Upper respiratory tract infection Vit.A def. Vitamin A deficiency WHO World Health Organization WKS Weeks WT Weight Z-N Stain Zeihi-Neilson stain viii Accessing TB Services in a Tribal District Renu Addlakha and Jens Seeberg1 Introduction Malkangiri India has the highest number of TB cases in the world accounting for more than one third of the global disease burden. TB kills more people in India than any other infectious disease. Approximately 1,000 people die from TB every day (2005). Every year, 30,000 children are forced to leave school because their parents have tuberculosis, and 100,000 women lose their status as mothers and wives on account of the social stigma associated with the disease. In fact, TB kills more women in India than all causes of maternal mortality combined. TB is clearly a factor in social development and its control becomes an integral part of poverty reduction. Consequently, it has got high priority within the health sector in India. Directly observed treatment, short-course (DOTS) is the main pillar of the Revised National Tuberculosis Control Programme (RNTCP). The operational feasibility of DOTS in the Indian context has been repeatedly demonstrated, with eight out of 10 patients treated in the programme being cured, as compared with approximately three out of 10 treated in the earlier National TB Control Programme. RNTCP has been implemented in a phased manner, extending the programme to the entire country by 2005. International agencies such as the World Health Organization (WHO), the World Bank and Danish International Development Assistance (Danida) have provided assistance to RNTCP. Orissa In a population of 37 million in the state of Orissa (Census of India, 2001), there are around 80,000 new cases of TB, with more than 19,000 deaths every year. RNTCP is being implemented in Orissa with support from Danida since 1997 in the form of the Danish Assistance to the Revised National Tuberculosis Control Programme (DANTB) project. By the end of 2004, the entire state was covered by the programme. Orissa has adopted a decentralized organizational structure for the implementation of RNTCP involving the state, district and 1 Renu Addlakha is a freelance researcher and DANTB consultant; Jens Seeberg is HSR Advisor, DANTB 1 Introduction primary health care levels, with the DOT provider playing a crucial role in treatment. A uniform approach for programme implementation and coverage seems to be unrealistic because of the heterogeneity of the population, language and socio-cultural behaviour as well as geographical inaccessibility of in any areas. The service-beneficiary gap is particularly marked in the case of tribal populations in hilly and forested areas requiring local adaptations to ensure quality coverage. There are over 62 tribes in Orissa constituting 22% of the state’s population. Tribal communities are marginalized from mainstream society in important ways. They often live in a harsh geographical environment with no control over natural resources and limited access to public utilities like electricity, water and sanitation, transport and communication, and health and education. In addition, negative stereotypes and discriminatory practices