Social assessment influences design of the India tuberculosis control project

E N V I R O N M E N T D E P A R T M E N DISSEMlINATION NOTES TOWARD ENVIRONMENTALLY AND SOCIALLY SUSTAINABLE DEVELOPMENT Number 54 Social Assessment Series May 1997 Social Assessment Influences Design of the India Tuberculosis Control Project The government of India is implementing approach encourages directly observed a new strategy to arrest the spread of tubercu- treatment-that is, TB patients take pre- losis'(TB) in the country. The World Bank- scribed drugs in the presence of a health funded Tuberculosis Control Project, one part care worker or other trained person who of this endeavor, used social assessment (SA) observes and records the treatment-and it as an "umbrella" approach to collect and focuses on infectious patients to prevent analyze the socioeconomic data needed for further transmission of the disease. project preparation and design; create an innovative strategy for stakeholder involve- SA Designed to Meet Several Project ment in project planning and activities, Planning Needs including a tribal peoples' action plan; and The greatest obstacle to overcoming TB develop appropriate social indicators-for the is that patients do not comrplete their treat- project. ment. Project planners knew 'that to address noncompliant behavior they would have to India's Struggle to Control TB comprehend the underlying influences on the The burden of TB in India is staggering. behavior, such as people's understanding of More than 1.2 million cases are reported the disease and the relationship between every year, and the annual mortality rate is patients and service providers. The Bank around 500,000, nearly one-fifth of annual, team recommended SA as way to conduct the TB deaths worldwide. Estimates indicate " - necessary social analysis and to formulate a that up to 50 percent of India's population'is key component of the TB Control Project: a infected with TB, of which approximately comprehensive. strategy for information, 10 percent will develop the disease. Without education, and communication (IEC). The appropriate intervention, cumulative TB SA's social analysis objectives were to deaths during this decade could be as high * Identify symptomatic patients in selected. as 5 million. households and obtain information about In 1992 the government of India their perceptions and interpretations of initiated a rigorous evaluation of its thirty- their symptoms, their knowledge about five-year-old National Tuberculosis Control the causes and transmnission mhethods of Program. Based on its findings, the govern- and cure for TB,iand their health seeking ment and the World Bank, with technical behavior support from the World Health Organization * Identify individuals who have been (WHO), prepared the Tuberculosis Control treated for TB to determine the type and Project to revise the program's strategy. The duration of treatrment prescribed,'their project was designed on the basis of fifteen experience with health providers, and pilot projects, financed by an advance from their current health status' the Project Preparation Facility, that tested a * Assess the distribution, capacity, and new strategy for TB cointrol. The updated accessibility of health facilities in the Maria Donoso Clark (SA2PH) is task manager of the India Tuberculosis Cortrol Project. For more information on the project or the SA, contact her dt The World Bank, 1818 H. Street, N.W., Washinqton, D.C., 20433. U.S.A. Fax (2021 477-0397.  study areas and obtain information about health personnel's knowledge of,.atti- eBox1. TheIndia TB Proect's lEC:Strategy : . ; ~tudes tcrward, and perception-s of T.B 'and :-; ;-, . , -udes to.ard, and perce -tions of TB ad VUnderstanding the conpiracyof silence' that surrounds TB and its :: TB patients - : . ' impact on patient treatment led to an IEC component that focuses * Deternine the extent of patients' use of public health care fac.lities, traditional heavily on patient-provider con nmunication and :that involves a - - - public health care -facilities, traditional.. . -. healers, and other health care providersabroad range of s akeholders, such as'physicians,. NGOs, and healers,-and other health care providers,.. * '.Determine why .ome patients failed ~ communities. The following SA recommendations were incorpo- .Deternine why scome pa ratedinto the IEC strategy: : ~~complete their'course of treatinent.. - ' - - ::--. i Using the communication paradigm of education and providing * : T~~'he main process objective of the SA - :.-.-, T-e main process .bjective of the SA patients. with information rather thdn relying on- patient motiva- was to involve key' stakeholder groups, - i h d - s _ , .. especially tribal pop s fr htion, which does not seem to affect their compliance .-.especially tribal populations for whom the.- : Bank r'equires a specific plan;of action, in the : . 0 * Providing trdinirg in interpersonal communications for all public d i . : siesign and impiementation of the IEC 0 -0$ sbector health cre 'providers .hc work with TB patients and . strategy .,,e b. 1) and tobuild and use training in counselinm for public sector physicians, nurses and .. strategy (see box 1) and to.build and use - * local capacity to carry out the SA. The final treatment supervisors - Qbjective of the SA wastouse the d1ata: :.: 3 - : 3Designing locally appropriate pictorialmaterials for illiterate - collected to develop appropriate social . patients that contain detailed information on drug regimens, indicators for the project. . ' ' Providing stylish materials for privsate sector:and NGO physi- ;cans for promotn short course chemotherap SA Methods Designing aprogram to use trained, cured, and compliant The SAteam focused on two different, ptients inCdistri:t TB centers, slums, an villages population groups, urban slum dwellers and -HavingIndian anthropologists train physicians going to work in- .: : : rural tribal populations, and hired. two - ;. :-tribal areas in local culture and local rmedical beliefs, practices,- research organizations to organize data and languages. - collection and anal:ysis. FEMCO)NSULT,T a X 0 Particularly innovative aspects of the IEC strategy include direct i Dutch organization, worked with Indian : . ' 'efforts to remove the stigma -of TB by advocdting patient associa- - - - re~searchers: to undertake an in.-depth ex-plo- .-: - researchers- to undertake an in-deph exp:o- i tions, employing cured pdtients as educators, and encouraging ration of TB-related issues among slum community members to become .sponsors of TB1patients. dwellers in. Bangalore. Hyderabad, Jaipur,.: . :: -: . :--:: : Lucknow, and Pune. At the same time, the Foundation for Research and Development of Underprivileged Groups, an Indian communication between service providers: : organization with'experience working in* and patients was also found todiscourage tribal areas, examined the sociocultural people from seeking treatment for TB. factors refated to TB:among tribal popula-. tions in'selected districts of Bihar, Gujarat, Poverty Himachal Pradesh, and West Bengal. Each Among both slum dwellers and tribal of the research teams combined both populations, the main reasons why many qualitative and quantitative data collection patients do not complete. their treatment are methods (see the table on page 3);- however, related to poverty, namely: the main focus of the research was on . Lack of funds to pay for transportation, qualitative data to uncover the reasons for 'leading patients to rely on the closest patient and provider behavior.; source:of treatment, even though it may beexpensive or ineffective Findings * Lack of funds to pay formedicine, The two studies found that in both leading to the interruption of treatment urban slum and tribal contexts, poverty; * Inability to sustain the costs of treatment patient perceptions about providers, and the . by private practitioners -stigma attached to TB' are the three factors' : . Inability to sustaini the loss of income.-'. with the greatest impact. on beliefs and . associated with having to' take time to practices in connection with TB. Ineffective collect medicine, and in-the tribal areas,  * Value the greater privacy afforded Qualitative Research Methods by private providers. SA context With paiients With service providers Relatively few NGOs in India care for TB patients. However, the Urban slums context Focus group discussions . Participant observation, SA found that people in urban areas, Mapping , Semistructured interviews tend to.value the NGOs more highly In-depth household interviews. - than they value government health providers and to view NGO physi- Rural tribal context Semi stmctred questionnaire in local languages Participant observation cians as more caring and dedicated.' Informal group discussions Focus group discussions Public services are the most com- . .. ndpth interviews. monly sought among tribal popula- tions, for whom. NGOs or private the inability to sustain the loss of income services are not readily available. of those who' have to accompany women ' Although-popular among TB patients to collect their medicine because of privacy and convenience, * Inability to sustain treatment following especially in urban areas, private service' ' migration in search of work providers had no- system for patient follow- Inaccessibility of primary health centers . up; did:not ensure'that patients had the in rural areas, especially during bad money or means to purchase the necessary weather and nonwork hours. treatment, and recommended more than The SA found that those who do not sixty, different types of treatment, only a abandon their treatment either have enough couple of which are considered effective by money to complete the course or, if they do . WHO standards. As a result, many patients'' not have money, they have access to a - 'who first visit private physicians end up competent nongovernmental organization seeking treatment in the government sectOr, (NGO) or local govemment facility that usually when the disease is well advanced provides free treatment. Critical gender- and more difficult.to treat. The SA also related findings included that prohibitions found that, despite patients' preferences for against women's control of :heir own private treatment, government facilities that activities and of family finances were offered directly observed therapy cured significant factors in their inability to earn more people and had the larg.est number of -or have access to money to comply with compliant patients. . treatment regimens. Similarly, women's tendency to wait longer than mten before Stigma and Secrecy adopting a "sick role" and seeking help . The SA found that the stigma associated leads to' severe TB cases and higher mortal-' with TB also prevents patients from seeking ity among women., treatment, and then from completing it. The stigma was higher among slum dwellers Service Providers - than among tribal populations, and within * The three main types of TB service . the urban p9pulation, it has an inverse providers are government, NGO, and correlation with level of education. In areas private practitioners. Most people with where stigma was least severe, it affected symptoms of TB first seek out private only females in certain categories, such as practitioners because they are conveniently unmarried girls and newly married women located, but also because patients ' without children. Women suffer the worst * Believe that they will treat them more consequences of the TB stigma. Where it is respectfully and with more understanding . strongest, young women with'TB are than other health providers"" ' 'unlikely to many, and those already married * Perceive the free medicines government are sometimes expelled from their homes. 3 J - clinics provide to be inferior to those - Th&e diagnosis of TB brings such shame available from privatepiractitioners or ' to'patien'ts in some areas, that even health pharrmacies ' prac'titioners will keep the diagnosis secret  from TB sufferers. Fearing the impact of the news on-the patient, the practitioners Box 2. SA Produces Social Indicators for the ldi,i TB Project X 0: i:sometimnes wrrongly inform them that the'y : ::.- : : --Xy0 sometimes wrongly inf.rm them that they The basic indicator of project effectiveness is the percentage of have another ailment, such as asthma.. patients&ired. Howevet, other pro ess-related.sociai indicators. Consequently, these patients do not com- include thfollowing : plete their treatment. The general culture of secrecy leads.to erroneous beliefs, such as ' Economic:- : that TB isspread through food, clothing, .:- ' :' :0' -:' l'' t -at TB is spread through food, c.othin, *Minimum cost of transportation to treatment centers (should. be and heredity. and thus that TB patients and affordable to patients and syrptomaric people) 0 . their.helongings should be phy-sically - i :.: 0 -: *:Minimurm lost wages in -coming to treatment center (cost should be isolated: ' . . within comfortable economic limits for patients and their families) Cornmunication : .Progrommatic The most effective form of communica- tion. about TB has been word of mouth Treatment and dicanostic sites readily accessible to.patients in thinugh and ~~~~~~~~catchmetae through compliant andcured TB patients who mentared spread information about TB and treatment -All drugs continuously available at treatment center facilities' to. their families and neighbors. This . Cnvenience-of patient flow within and between facilities -,:, helps otherinfectedpe'.ople seektreatment: * 0 0: . ;; - Time spenf'by patient-in-diagnostic facility, i-n treatment fcility,in : initially; however, they:are most likely to transportation between fabilities- - : 0 complete treatment if W they receive lnforma-;0 t ;- ; *Patient information- obvious and comprehensible to i)literate patients receive ~~~~~(oral or pictorial) ':.tion and support from.health Droviders. such ; ;. .. - ;.:7- ti-n.ansppor from.healt pro vid, - Explanation provided.and patients un'derstand how to take medi- as through directly observ,ed therapy. A cines und duraton of treatment significant finding for the tribal populations Explanation provided and patients urnderstand that feeling well is in this regard is that most physicians who are , ot cbrrelated with being cured newly psted t serve hem nether spak theinforr'motion is repeated about how and, h.ow long ttae meicie local language nor understand the culture in (number of times, occasions, and health providers)- which they:are working. Patientsagree that doctor has thoroughly examined them Similarly, a major factor-deterring Patients agre that doctor is.interested in how they feel and in their patients from using govemrnment facilitiesis recovery that they do not like the way service provid- Patients have confidence inbdoctors' authority 0 0 : Eers treat them:'Patients comnmonly reported-: : ,0 All health care staff display a modicu,mnof respect for patients - - that providers blame and scold them for. S.c.a. noncompliance instead of-explaining the implications of interrupting treatment and Reucio f T stigma , R *-Redudcti<3 of TB stiqm - finding ways to help them take their medi- Patients report neighbors and relatives still -Willing to converse with cine regularly. . . them and visit them - -:-: increase in initial visits to TB treatment centers Impacts. of the SA D - - Decline in percentage of-false nanmes and addresses.given to The SA helped the project team :treatment"centers - . * .better understand the major obstacles to * increase in percentage of TB patients reporting that-doctors have. : patient compliance with treatment. informed them that they hove TB -regimens, * identify the main problems- associated with the provision of services by private : and public practictioners, - to involving private.physicians in TB - uncover the key hindrances to effective control, and a morezappropriate way to conftmunication between patients and measure project effectiveniess and out- '- :providers. .. ... X '. : -: : 5 : t: - rcomes (seebox 2): -, With, this information the project team . was able to prepare a more focussed communications strategy, a- new approach: