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INT J TUBERC LUNG DIS 4(5):401–408 © 2000 IUATLD
REVIEW ARTICLE
Community involvement in tuberculosis control: lessons from other health care programmes
M. Hadley,* D. Maher†
* Public Health Consultant, † Department for International Development, London, UK SUMMARY
Decentralising tuberculosis control measures beyond health facilities by harnessing the contribution of the community could increase access to effective tuberculosis care. This review of community-based health care initiatives in developing countries gives examples of the lessons for community contribution to tuberculosis control learned from health care programmes. Sources of information were Medline and Popline databases and discussions with community health experts. Barriers to success in tuberculosis control stem from biomedical, social and political factors. Lessons are relevant to the issues of limited awareness of tuberculosis and the benefits of treatment, stigma, restricted access to drugs, case-finding and motivation to continue treatment. The experience of other programmes suggests potential for an expansion of both formal and informal community involvement in tuberculosis control. Informal community involvement includes delivery of messages to encourage tuberculosis suspects to come forward for
treatment and established tuberculosis patients to continue treatment. A wide range of community members provide psychological and logistic support to patients to complete their treatment. Lessons from formal community involvement indicate that programmes should focus on ensuring that treatment is accessible. This activity could be combined with a variety of complementary activities: disseminating messages to increase awareness and promote adherence, tracing patients who interrupt treatment, recognising adverse effects, and case detection. Programmes should generally take heed of existing political and cultural structures in planning communitybased tuberculosis control programmes. Political support, the support of health professionals and the community are vital, and planning must involve or stem from the patients themselves. K E Y W O R D S : community involvement; developing countries; health programmes; tuberculosis
A SPECIFIC DIAGNOSTIC TEST for tuberculosis (TB) has been available since 1882 and drug treatment since 1942,1 but still the problem of TB persists. In developing countries the disease is accountable for 25% of avoidable deaths.2 The reasons behind this are a complex combination of biological, social and political factors that influence the progress of this epidemic and control efforts. Decentralising TB control measures beyond health facilities, by harnessing the contribution of community organisations, has the potential to increase access to effective treatment.3,4 Community involvement in health care has been widespread. Harnessing community contribution to TB control needs to take heed of the lessons learnt from such experiences. The purpose of this paper is to give examples of the lessons for community involvement in TB control learned from other health care programmes. To take full advantage of the varied experiences of other programmes, specific aspects of TB control are discussed in the paper. For each aspect examples
are given of the successful approaches from other areas of health care that may address constraints to TB control. There are examples of formal and informal community involvement. Formal involvement refers to the use of community members chosen to play a part within the infrastructure of the health services, such as community health workers (CHWs), village health workers (VHWs) and traditional birth attendants (TBAs). Informal involvement includes the participation of neighbours, family members and other community members in the support of one or more patients. The final section reviews general lessons learnt from the extensive experience of CHW programmes in the 1980s and 1990s. These lessons will provide a solid basis on which to launch community-based TB control programmes. The aspects of TB control discussed in this paper are awareness raising, case finding, providing access to treatment, addressing stigma, supporting patients during treatment, record keeping and tracing those who interrupt treatment (Table).
Correspondence to: Mary Hadley, 16 Manor Park, Buckingham MK18 1QY, UK. Tel/Fax: ( 44) 1280 823898. e-mail: [email protected] Article submitted 3 August 1999. Final version accepted 11 January 2000.
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Table
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Summary of potential for community involvement in tuberculosis control
Type of community involvement Formal/informal Activity Delivery of messages to promote knowledge of TB symptoms and need for treatment completion CHW surveillance Comments Peer educators have limited usefulness
Purpose of community involvement Raising community awareness of TB and TB treatment
Case detection and referral for diagnosis Providing access to drugs
Formal
Formal
CHWs as providers of TB drugs
Addressing stigma: direct approach
Formal/informal
Addressing stigma: indirect approach
Formal
Raising awareness to encourage compliance
Formal/informal
Disseminating information through home care volunteers or through communication and discussion groups Integrating community-based TB control programmes with nonstigmatised health care programmes or primary health care Disseminating information and encouraging compliance
Combining two diseases or activities makes surveillance more cost-effective Combining with a non-stigmatised disease or integrating with PHC programme increases social acceptability of treatment Patients, providers and the community are involved in communication and discussion
General support
Informal/formal
Direct observation of treatment
Formal/informal
Recognition of adverse effects and tracing of patients who interrupt treatment
Formal
Documentation of progress and outcome
Formal/informal
Family support, peer groups and community volunteers to support patients throughout treatment CHW, family member or other community member to observe patients taking medication CHW to recognise and refer patients with adverse drug reactions Community volunteers to keep in contact with patients over the entire treatment period Formation of VHW associations, use of manuals and the contribution of school children or family members to read instructions
village health workers.
Messages should address individual benefits of treatment completion Known side effects of treatment should be explained Psychological support and assistance in the delivery and collection of sputum samples, results and drugs The majority of innovative approaches are in the area of community-based TB control
Illiterate community volunteers from low socio-economic groups provide services to favour the disadvantaged in the community
CHW
community health worker; PHC
primary health care; VHW
INCREASING COMMUNITY AWARENESS
The common symptoms of TB (cough and fever) are non-specific, overlapping with those of other common endemic diseases such as respiratory infections.5 TB is also often perceived as a chronic, incurable disease. Raising awareness of the signs and symptoms of a disease and the availability and benefits of treatment has been successfully carried out by a variety of community members through formal and informal arrangements.6–9 These include village leaders, school teachers, CHWs, religious leaders, trade unions and women’s organisations. A strategy in which knowledge of leprosy was passed through school children to illiterate parents in India may also be applicable to
TB.10 Success was most apparent where the mass media complemented the messages given by community members.8 These examples indicate that TB control programmes could take advantage of existing community resources to enhance community knowledge of TB. Although peer educators have been successful in some settings,11,12 low prevalence and the lack of a homogenous TB ‘community’ restrict this approach to high prevalence populations of high population density. It is important to note that awareness campaigns, however well disseminated, will only have a positive impact if diagnosis is available, treatment is accessible and there are no other barriers preventing people from receiving treatment.
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CASE DETECTION AND REFERRAL FOR DIAGNOSIS
There are many people with TB who do not come forward for treatment. Community-based case finding may help control programmes achieving high cure rates to make progress towards the World Health Organization (WHO) target of 70% case detection. As an ongoing process, unlike mass screening, community-based surveillance has been found to be sustainable, the key being that CHWs know their own people.9 There are examples of programmes that combine surveillance of two diseases in one programme: in Ethiopia and Mali guinea worm is combined with measles and in other African countries with neonatal tetanus.9 In programmes achieving high cure rates, once suspected cases have been identified, CHWs can continue their involvement by referring TB suspects for diagnosis, delivering sputum specimens to health care facilities and collecting results. Surveillance has been successfully combined with distribution of curative drugs, stool collection and health education in guinea worm programmes; costs were estimated to be $100–200 per village per year.13 Case detection is a vital element of a TB control programme. These examples illustrate the possibility of combining surveillance activities with other disease control efforts and involving community workers in a multi-activity role. It is important to clearly define the role of the CHWs in each setting. Diagnosis and prescription of treatment must remain in the domain of the health professionals. Maintaining this clear distinction of roles in TB control has the advantage of minimising the conflict and non-co-operation between CHWs and health professionals that can occur in programmes where roles and tasks are less well defined.14,15
2 communication between drug distributors and stores is essential;24 3 programmes planned by the community are more likely to be sustainable than those planned by health care professionals; the higher the level of participation the higher the success of the programme, provided that basic supervision is built into programme implementation;24 4 home visits for drug delivery, while apparently very convenient, are not always welcomed by patients with stigmatised diseases such as TB;25 5 community members are able to evaluate the appropriateness of house-to-house versus central distribution and change their strategy accordingly.24 In areas where TB control efforts are still hampered by patients’ lack of access to regular drug supplies, provision should be the main focus of community-based TB programmes and is likely to be the most successful. Programmes must have political support to ensure a regular drug supply, health professionals’ support to maintain good communication with community workers, and community support and involvement in the planning process, monitoring and evaluation of the programme to ensure sustainability.
ADDRESSING STIGMA
Direct approach Stigma is a barrier that presents a serious obstacle to successful TB control. Health-seeking behaviour is made up of a balance of costs and benefits to the patient. The benefits of getting well are unlikely to out-weigh the costs of social and family rejection and loss of employment and accommodation at the early stages of the disease. A direct approach to address stigma in a society involves understanding and addressing the beliefs and attitudes of the community towards the disease through qualitative research and awareness campaigns. A number of leprosy control and HIV/AIDS programmes have been successful in reducing stigma using the direct approach. Three strategies have been identified which could be applied to TB programmes: 1 involvement of patients, providers and the community in communication and discussion of leprosy in India;26 2 the use of ‘home care volunteers’ to disseminate information about AIDS in communities in Zambia;27 and 3 the use of messages developed from the results of qualitative research into attitudes towards leprosy, to encourage a favourable attitude towards leprosy patients in the Philippines.28 The employment of these strategies should be considered to increase coverage of TB cases in areas where stigma is marked and treatment coverage low.
ACCESS TO DRUGS
All long-term treatments, including successful TB control, require an uninterrupted drug supply. Many health care programmes name irregular drug supplies as the main reason patients are unable to complete treatment.16,17 The distribution of curative medications has been found to be the most acceptable, effective and sustainable function of a CHW, providing supplies are adequate. It was seen to empower the community by providing access to treatment, to enhance the status of the CHW and to address the true needs of communities. Communities attach a higher value to those who give palliative and curative care and a lower value to CHWs who only give preventive and promotive care.18–23 Practical lessons that have been learnt from community-based distribution programmes are the following: 1 programmes are dependent on good drug supplies at central stores down to district and health centre levels;24
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Indirect approach An indirect method aims to lessen the effect of stigma on health services utilisation and to improve treatment adherence without directly addressing community attitudes but by creating more socially accessible services. Examples from selected programmes have shown that, by associating the stigmatised disease with a non-stigmatised disease, treatment is found to be more acceptable. Using one approach, family planning was integrated into the primary health care system in Pakistan, resulting in improved social accessibility for women.29 Alternatively, the confidence of the community in health workers has been increased through provision of simple cure of intestinal parasitic infections, which has resulted in higher acceptance of family planning.30 TB control programmes should thus consider the benefits of integration with a non-stigmatised disease control programme.
relapse or drug resistance. Community members already directly involved with TB patients should collaborate with health workers to provide patients with accurate information regarding length of treatment and known side-effects. General support As they are familiar with their patients and in close proximity to them, community members are well suited to the role of supporter. In leprosy control and AIDS care programmes, home visits by community members and self-help groups are two strategies used to support patients treated in the community. Volunteers from low socio-economic groups were willing to support patients in the community without financial remuneration and only limited benefits.27 Peer groups were beneficial in leprosy control and AIDS care.31 In leprosy control programmes in areas of low disease prevalence, residential camps were established to facilitate group meetings. Sharing fears, beliefs and experiences with other members of the group was very beneficial (Dr V Pannikar, Leprosy Control Programme, WHO, personal communication). Family support was vital in achieving compliance among pregnant women taking iron supplementation.16 Support for patients to promote adherence to treatment should be built into all TB control programmes. In addition to enlisting family support, community members can be approached to volunteer as house-tohouse supporters for TB patients, and the patients themselves encouraged to establish self-help groups. Help may be required to provide accommodation for meetings, which may include residential stay in areas of low prevalence or where patients are scattered over a wide geographical area. Direct observation of treatment One element of the WHO-recommended TB control strategy DOTS (directly observed therapy shortcourse) for all smear-positive TB patients is direct observation of treatment.32 In many areas this requires patients to be admitted to hospital for the first 2 months of treatment, or to travel daily or three times weekly to a health centre for observation. This can result in considerable social costs to the patient and an economic burden on the family. Organised community groups, peer groups, chosen members of the community and family members all have the potential to act as supervisors to ensure completion of treatment and cure. Examples from other health care programmes, however, are limited. Readers are referred to innovative approaches to community-based DOTS strategies already in progress.27,33–36 Recognising adverse effects and tracing patients who interrupt treatment Patients suffering severe side-effects are likely to interrupt their treatment. The use of CHWs to recog-
SUPPORT AND MOTIVATION OF PATIENTS
TB treatment is long, symptoms can subside before course completion, and the drugs prescribed can give side-effects. Patients who are aware of their diagnosis and have come forward for treatment require support and motivation to continue. Community members are most conveniently placed to help support and motivate patients during their treatment regimens. Three ways of motivating patients to adhere to medication are discussed: raising awareness of the benefits of completing treatment, providing general support, and directly observing patients taking their medication. Raising awareness Many health programmes have made use of informal as well as formal community involvement to disseminate messages aimed at motivating community members. Examples from leprosy control programmes have shown that school teachers, students and scouts successfully provided health education, motivating patients to continue treatment.6 School children have been successful in encouraging families to practise hand washing and use latrines.7 In the formal sector, CHWs were more suitable than physicians as educators to increase compliance in guinea worm eradication programmes.9 Lessons from sanitation programmes indicate the importance of the content of the messages and a focus on individual benefits rather than ideal behaviours or community benefits.7 Programmes aimed at motivating pregnant women to take iron supplementation found that prior knowledge of length of treatment and known side-effects resulted in better compliance.16 TB programmes could use a wide variety of community members to help spread messages to TB patients to raise awareness of the benefits of completing treatment. The messages should contain advice encouraging patients to complete treatment in order to restore full participation in society and prevent
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nise adverse drug reactions was very helpful in onchocerciasis programmes.24 Recognition and referral enabled the patients to continue treatment using alternative drug regimens. Recognition of adverse effects is especially important if thiocetazone is used in populations with high HIV prevalence.32 Community-based vaccination programmes in Bangladesh, using illiterate, low-income urban women to keep a close contact with mothers over a long period, have achieved 90% full vaccination coverage in their areas. Adequate supervision, using one supervisor for 30 volunteers, was an important component in its success.37 Tracing patients who interrupt treatment in developing countries remains problematic. Communitybased TB supervisors maintaining close contact with patients can be more efficient than health services staff in tracing TB patients who interrupt treatment. Documentation of progress and outcome Information collection and recording are a vital component of TB control programmes. Involving communities in TB control will inevitably mean transferring some of this to community members. In many primary health care and disease control programmes, accurate and timely record keeping has been problematic.24,38,39 Nevertheless, some examples of innovative solutions may be applied to TB control: 1 the use of manuals, including record keeping to enable illiterate or semi-literate community members to keep records accurately, using pictures and symbols to replace word and numbers;40 2 the formation of VHW associations9 to provide mutual support and peer pressure for record completion; 3 the use of school children or literate family members or neighbours to read instructions and fill in records.9 The decentralisation of TB control services may not necessarily be hampered by a lack of literate community members if these strategies are employed.
attrition rates if they come from the community, are identified and selected by the community, and are resident in the community.15,22 ‘Selected by the community’ in many instances refers to selection by community leaders alone, who tend to favour their own friends and relatives; a high proportion of these come from dominant lineage.41–43 While literacy is a pre-requisite for guinea worm programmes in Nigeria,9 illiterate, low cast women have been recruited in many countries, with the advantage that they reach other women of the same socioeconomic status, thus improving equity of service delivery.9,44,45 When selection of CHWs is through dominant lineage, however, the CHWs tend to ignore the poor and favour the better off. 42 Another criteria for selection is gender. Women chosen as CHWs have been found to be more diligent and less likely to be motivated by ambition or the hope of material reward. In Burkina Faso, both men and women were recruited as CHWs, but it was found to be important that the community workers came from the same ethnic group.9 Selection of CHWs for TB control must take into account existing community structures, ethnic groups and gender, and above all they must involve TB patients. Literacy, however, need not be a pre-requisite. Motivation Factors that play a vital role in the motivation of CHWs are support from health services staff and the community, supervision and training, adequate supplies, and a reasonable activity level expected of the worker.14 A review of financial incentives identified three sources: the government, non-governmental organisations and the community itself. Sustainability has been found to be problematic in all three approaches.46 When deciding on types of motivation for CHWs, TB control programmes should ensure that strategies can be sustained in the long term and provide sufficient incentive for CHWs to continue to work diligently. This will depend on both the availability of long-term human and financial resources, and political, health service staff and community support. General requirements of a successful CHW scheme Large scale CHW schemes rely on a ‘traditional authoritarian structure and political commitment that invites and stimulates voluntary effort’.14 A strong health infrastructure with plenty of young, educated, unemployed men and women and religious and ethical values compatible with voluntary work are additional requirements. Voluntary work must be seen as legitimate for middle-class women, and there should be a long history of community involvement.22 Small scale programmes, on the other hand, require a good system of supervision, local political commitment, adequate supplies, charismatic people to drive the programme and community willingness
COMMUNITY HEALTH WORKER PROGRAMMES
General lessons learnt through the evaluation and review of CHW programmes in the 1970s and 1980s, of particular use to planners of TB control programmes, include recruitment, motivation and general requirements for successful CHW programmes. Recruitment Many community-based schemes have failed to recognise and use existing systems, leaving behind them a graveyard of inactive community-based committees and organisations. When recruitment is necessary, CHWs show higher levels of acceptance and lower
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to participate in making it a success.14 The main constraint to enlarging programmes was the necessary shift of power from local politicians, policy makers and health professionals to the community. In view of the criteria for successful large scale programmes, the involvement of CHWs in TB control programmes in most countries should begin on a small scale. Well-designed programmes will involve local political factions, health professionals and communities, especially TB patients, in the planning process. A regular drug supply should be guaranteed from central to community level, and supervision of CHWs should be in-built. Acknowledgements
We are grateful to the following people for their helpful comments: Dr Patricia Hudelson, WHO, Geneva, Dr Peter Gondrie and Dr Jeroen van Gorkom, KNCV, The Netherlands, Dr John Walley, NIH, Leeds, Jessica Ogden and Sharon Huttly, London School of Hygiene and Tropical Medicine. The views expressed by Dr Maher are not necessarily those of the United Kingdom Department for International Development.
References
1 McKeown T. The modern rise of population. London: Edward Arnold, 1976. 2 Murray C J, Styblo K, Rouillon A. Tuberculosis in developing countries: burden, intervention and cost. Tubercle Lung Dis 1990; 65: 6–24. 3 Maher D, Hausler H P, Raviglione M C, et al. Tuberculosis care in community care organisations in sub-Saharan Africa: practice and potential. In J Tuberc Lung Dis 1997; 1: 276–283. 4 Maher D, Gondrie P, van Gorkom J, Raviglione M. Community contribution to tuberculosis control, past, present and future. Int J Tuberc Lung Dis 1999; 3: 762–768. 5 Liefooghe R, Baliddowa J B, Kipruto E M, Vermeire C, de Munynck A O. From their own perspective: a Kenyan community perception of tuberculosis. Trop Med Int Health 1997; 2: 809–821. 6 Kumar A, Thangavel N, Durgambal K, Anabalagan M. Community leaders involvement in leprosy health education. Int J Lep 1984; 56: 901–911. 7 Bateman O M, Jahan R A, Brahman S, Zeitlyn S, Laston S. Prevention of diarrhoea through improving hygiene behaviours: the Sanitation and Family Education (SAFE) pilot project experience. Dhaka: CARE/International Centre for Diarrhoeal Disease Research, Bangladesh. 1995; publication no. 42. 8 Garfield R, Vermund S H. Health education and community participation in mass drug administration for malaria in Nicaragua. Soc Sci Med 1986; 22: 869–877. 9 Cairncross S, Braide E I, Bugri S Z. Community participation in the eradication of guinea worm disease. Acta Trop 1996; 61: 121–136. 10 Bhore P D, Bhore C P, Powar S, Nade A L, Kartikeyan S, Chatuvedi R M. Child to parent education: a pilot study. Ind J Leprosy 1992; 64: 51–57. 11 Visrutaratna S, Lindan C P, Sirhorachai A, Mandel J S. ‘Superstar’ and ‘model brothel’: developing and evaluating a condom promotion programme for sex establishments in Chiang Mai, Thailand. AIDS 1995; 9 (Suppl 1): S69–S75. 12 Mbugua I. Kenya: creating a network of youth educators. People 1989; 16: 24–25. 13 O’Neill K. Community-based surveillance: a critical examination of nine case studies. In: Cairncross S, Braide E I, Bugri S Z, eds. Community participation in the eradication of guinea worm disease. Acta Trop 1996; 61: 121–136.
14 Walt G, Perera M, Heggenhougen K. Are large scale volunteer community health worker programmes feasible? The case of Sri Lanka. Soc Sci Med 1989; 29: 599–608. 15 Walt G. Community Health Workers: policy and practice in national programmes; a review with selected annotations. EPC publication no. 16. London, UK: London School of Hygiene and Tropical Medicine, Spring 1988. 16 Galloway R, McGuire J. Determinants of compliance with iron supplementation: supplies, side effects or psychology? Soc Sci Med 1994; 39: 381–390. 17 Farmer P, Robin S, Ramilus S L, Kim J Y. Tuberculosis, poverty and ‘compliance’: lessons from rural Haiti. Semin Respir Infect 1991; 6: 254–260. 18 Stone L. Primary Health Care for whom? Village perspectives from Nepal. Soc Sci Med 1986; 22: 293–302. 19 Jaju V. Role of the village health worker—a glorified image. In: Jayarao K S, Patel A J, eds. Under the lens: health and medicine. Medico Friend Circle. New Delhi, India: New Delhi Voluntary Health Association of India, 1986. 20 Connolly C, Dunn L. Development of appropriate methods for sustaining rural health motivators, Research paper 20, University of Swaziland, 1986. In: Walt G, ed. Community Health Workers: policy and practice in national programmes; a review with selected annotations. EPC publication no. 16. London, UK: London School of Hygiene and Tropical Medicine, Spring 1988. 21 Enge K. Evaluation: Health promotor programs, Ministry of Health, Peru 1984, Management Sciences for Health, Boston USA. In: Walt G, ed. Community Health Workers: policy and practice in national programmes; a review with selected annotations. EPC publication no. 16. London, UK: London School of Hygiene and Tropical Medicine, Spring 1988. 22 Chauls D. Volunteers who work: the community health care project in Burma. Int Quart Com Health Ed 1982; 3: 249–266. 23 Curtale F, Siwakoti B, Lagrosa C, La Raja M, Guerra R. Improving skills and utilization of community health volunteers in Nepal. Soc Sci Med 1995; 40: 1117–1125. 24 UNDP/World Bank/WHO Special Programme for Research and Training in Tropical Diseases 1996. Community directed treatment with Ivermectin: report of a multi-country study. TDR/AFR/RP/96-1. Geneva, Switzerland: WHO, 1996. 25 Hampton J. Uganda: TASO: living positively with AIDS. Children Worldwide 1993; 20: 20–22. 26 Gershon W, Scrinivasan G R. Community based rehabilitation: an evaluation study. Lepr Rev 1992; 63: 51–59. 27 Blinkoff P, Bukanga E, Syamalevwe B, Williams G. Under the Mupundu tree: volunteers in home care for people with HIV/ AIDS and tuberculosis in Zambian copperbelt. Strategies for Hope, No. 14. London UK: Actionaid, 1999. 28 Paz C, Medina I, Ventura E. A multidisciplinary study of stigma in relation to Hansen’s disease among the Tausug in the Philippines. Social and Economic Research Project Reports, no. 7. Geneva, Switzerland: WHO, 1990. 29 Barzgar M A, Sheikh M R, Bile M K. Female health workers boost primary care. World Health Forum 1997; 18: 202–210. 30 JOICFP. From worms and family planning to development of the people: a case of technical assistance through integrated family planning projects. Internal report. Tokyo, Japan: Japanese Organisation for International Co-operation in Family Planning, 1982. 31 Olukoya A A. Approaches to AIDS education for the grassroots in Nigeria. Hygie 1990; 9: 32–33. 32 Maher D, Chaulet P, Spinaci S, Harries A. Treatment of tuberculosis: guidelines for national programmes. 2nd ed. WHO/ TB/97.220. Geneva, Switzerland: WHO, 1997. 33 Chowdhury A, Chowdhury S, Islam N, Islam A, Vaughan P. Control of tuberculosis by community health workers in Bangladesh. Lancet 1997; 350: 169–172. 34 Wilkinson D, Davies G R. Coping with Africa’s increasing tuberculosis burden: are community supervisors an essential
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35
36
37
38
39 40
component of the DOT strategy? Trop Med Int Health 1997; 2: 700–704. Edginton M E. Tuberculosis patient care decentralised to district clinics with community-based directly observed treatment in a rural district of South Africa. Int J Tuberc Lung Dis 1999; 3: 445–450. Squires S B, Wilkinson D. Strengthening ‘DOTS’ through community-care for tuberculosis. Observation alone isn’t the key. BMJ 1997; 315: 1395–1396. Hughart N, Silimpari D R, Khatum J, Stanton B. A new EPI strategy to reach high-risk urban children in Bangladesh: urban volunteers. Trop Geogr Med 1992; 44: 142–148. Richards F, Gonzales-Peralta C, Jallah E, Miri E. Communitybased invermectin distributors: onchocerciasis control at the village level in Plateau State, Nigeria. Acta Trop 1996; 61: 137–144. Rao P S. Retrieval of ‘left the area leprosy cases’ by cross notification. Indian J Lepr 1986, 58: 420–423. Valasques-Guerra R, Aguirre E, de la Cruze D, Fuentes F, Terborgh A. When your trainees don’t read. A manual for reproductive health trainers. Arlington, VA, USA: Development Associates, 1996; xxii: 125.
41 Jobert B. Populism and health policy: the case of community health volunteers in India. Soc Sci Med 1985; 20: 1–28. 42 Quadeer I. Social dynamics of health care: the CHW scheme in Shahdol District. Socialist Health Review 1985; Sept: 74–83. In: Walt G, ed. Community Health Workers: policy and practice in national programmes; a review with selected annotations. EPC publication no. 16. London, UK: London School of Hygiene and Tropical Medicine, Spring 1988. 43 Cham K, MacCormack C, Touray A, Baleh S. Social organisation and political factionalism: PHC in the Gambia. Health Policy Plan 1987; 2: 214–226. 44 Mukhopadhayay M. Human development through primary health care: studies in India. In: Morley D, Rohde J E, Williams G, eds. Practising health for all. Oxford, UK: Oxford University Press, 1983: 133–144. 45 Berman P P. Village health workers in Java, Indonesia: coverage and equity. Soc Sci Med 1984; 19: 411–422. 46 De Zoyza I, Cole-King S. Remuneration of the community health workers: what are the options? World Health Forum 1983; 4: 125–130.
RÉSUMÉ
La décentralisation des mesures de lutte antituberculeuse en dehors des institutions de soins en attelant la contribution de la collectivité pourrait accroître l’accès à une prise en charge effective de la tuberculose (TB). Cette revue des initiatives de soins de santé basés sur la collectivité dans les pays en développement donne des exemples des leçons que la contribution de la collectivité à la lutte antituberculeuse a tiré des programmes de soins de santé. Les bases de données Medline et Popline furent les sources d’information, de même que les discussions avec des experts de la santé communautaire. Les barrières au succès de la lutte antituberculeuse proviennent de facteurs biomédicaux, sociaux et politiques. Les leçons sont d’application aux problèmes du niveau de conscience limité de la TB et des avantages de son traitement ainsi que de la stigmatisation, de l’accès limité aux médicaments, du dépistage et de la motivation à poursuivre le traitement. L’expérience d’autres programmes suggère l’existence d’un potentiel d’expansion de l’implication, à la fois formelle et informelle, de la collectivité dans la lutte contre la TB. L’implication informelle de la collectivité
comprend la transmission de messages pour encourager les gens à se présenter pour traitement et pour encourager ceux atteints de TB à poursuivre ce traitement. Un soutien psychologique et logistique est fourni aux patients pour compléter leur traitement par une grande variété de membres de la collectivité. Les leçons provenant d’une implication formelle de la collectivité indiquent que les programmes devraient concentrer leur attention sur l’affirmation que le traitement est accessible. Cette activité pourrait être combinée avec une variété d’activités complémentaires : dissémination de messages pour augmenter le niveau de conscience et pour promouvoir l’adhésion thérapeutique, la recherche des patients qui ont interrompu le traitement, le dépistage des effets collatéraux et la détection des cas. En général, les programmes devraient tenir compte des structures politiques et culturelles existantes pour la planification des programmes de lutte contre la TB basés sur la collectivité. Le soutien politique, le soutien des professionnels de la santé et de la collectivité sont vitaux et le planning doit impliquer ou même provenir des patients TB eux-mêmes.
RESUMEN
Las medidas de descentralización del control de la tuberculosis (TB) más allá de las medidas sanitarias, incluyendo la contribución de la comunidad, puede aumentar el acceso a la atención eficaz de la tuberculosis. Esta revisión de iniciativas de atención de salud basada en la comunidad en los países en desarrollo nos da ejemplo de lecciones para la contribución de la comunidad al control de la TB, a través de programas de salud. Las fuentes de información fueron las bases de datos de Medline y Popline, así como las discusiones con expertos en salud de la comunidad. Las barreras para el éxito en
el control de la tuberculosis se originan en factores biomédicos, sociales y políticos. Las enseñanzas son relevantes en cuanto a los conocimientos limitados de tuberculosis y los beneficios del tratamiento, estigmas, acceso restringido a las drogas, búsqueda de casos y motivaciones para continuar el tratamiento. La experiencia de otros programas sugiere potenciar la expansión del compromiso de la comunidad en controles formales e informales de la TB. El compromiso informal de la comunidad incluye la difusión de mensajes para estimular a la gente a incorporarse al
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tratamiento y a los pacientes de TB para continuar con el mismo. Un amplio grupo de miembros de la comunidad provee un apoyo psicológico y logístico a los pacientes para completar su tratamiento. Las enseñanzas del compromiso formal de la comunidad indican que los programas deben orientarse para asegurar que el tratamiento sea accesible. Esta actividad puede combinarse con varias actividades complementarias : difundir mensajes para aumentar el conocimiento y promover la
adhesión, orientar a los pacientes que interrumpen el tratamiento, reconocer los efectos adversos y detectar los casos. Los programas deben conocer las políticas existentes y las estructuras culturales para planear programas de control de TB basados en la comunidad. El apoyo político y el de los profesionales de la salud y de la comunidad son vitales y la planificación debe incorporar a los mismos pacientes de TB.
REVIEW ARTICLE
Community involvement in tuberculosis control: lessons from other health care programmes
M. Hadley,* D. Maher†
* Public Health Consultant, † Department for International Development, London, UK SUMMARY
Decentralising tuberculosis control measures beyond health facilities by harnessing the contribution of the community could increase access to effective tuberculosis care. This review of community-based health care initiatives in developing countries gives examples of the lessons for community contribution to tuberculosis control learned from health care programmes. Sources of information were Medline and Popline databases and discussions with community health experts. Barriers to success in tuberculosis control stem from biomedical, social and political factors. Lessons are relevant to the issues of limited awareness of tuberculosis and the benefits of treatment, stigma, restricted access to drugs, case-finding and motivation to continue treatment. The experience of other programmes suggests potential for an expansion of both formal and informal community involvement in tuberculosis control. Informal community involvement includes delivery of messages to encourage tuberculosis suspects to come forward for
treatment and established tuberculosis patients to continue treatment. A wide range of community members provide psychological and logistic support to patients to complete their treatment. Lessons from formal community involvement indicate that programmes should focus on ensuring that treatment is accessible. This activity could be combined with a variety of complementary activities: disseminating messages to increase awareness and promote adherence, tracing patients who interrupt treatment, recognising adverse effects, and case detection. Programmes should generally take heed of existing political and cultural structures in planning communitybased tuberculosis control programmes. Political support, the support of health professionals and the community are vital, and planning must involve or stem from the patients themselves. K E Y W O R D S : community involvement; developing countries; health programmes; tuberculosis
A SPECIFIC DIAGNOSTIC TEST for tuberculosis (TB) has been available since 1882 and drug treatment since 1942,1 but still the problem of TB persists. In developing countries the disease is accountable for 25% of avoidable deaths.2 The reasons behind this are a complex combination of biological, social and political factors that influence the progress of this epidemic and control efforts. Decentralising TB control measures beyond health facilities, by harnessing the contribution of community organisations, has the potential to increase access to effective treatment.3,4 Community involvement in health care has been widespread. Harnessing community contribution to TB control needs to take heed of the lessons learnt from such experiences. The purpose of this paper is to give examples of the lessons for community involvement in TB control learned from other health care programmes. To take full advantage of the varied experiences of other programmes, specific aspects of TB control are discussed in the paper. For each aspect examples
are given of the successful approaches from other areas of health care that may address constraints to TB control. There are examples of formal and informal community involvement. Formal involvement refers to the use of community members chosen to play a part within the infrastructure of the health services, such as community health workers (CHWs), village health workers (VHWs) and traditional birth attendants (TBAs). Informal involvement includes the participation of neighbours, family members and other community members in the support of one or more patients. The final section reviews general lessons learnt from the extensive experience of CHW programmes in the 1980s and 1990s. These lessons will provide a solid basis on which to launch community-based TB control programmes. The aspects of TB control discussed in this paper are awareness raising, case finding, providing access to treatment, addressing stigma, supporting patients during treatment, record keeping and tracing those who interrupt treatment (Table).
Correspondence to: Mary Hadley, 16 Manor Park, Buckingham MK18 1QY, UK. Tel/Fax: ( 44) 1280 823898. e-mail: [email protected] Article submitted 3 August 1999. Final version accepted 11 January 2000.
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Summary of potential for community involvement in tuberculosis control
Type of community involvement Formal/informal Activity Delivery of messages to promote knowledge of TB symptoms and need for treatment completion CHW surveillance Comments Peer educators have limited usefulness
Purpose of community involvement Raising community awareness of TB and TB treatment
Case detection and referral for diagnosis Providing access to drugs
Formal
Formal
CHWs as providers of TB drugs
Addressing stigma: direct approach
Formal/informal
Addressing stigma: indirect approach
Formal
Raising awareness to encourage compliance
Formal/informal
Disseminating information through home care volunteers or through communication and discussion groups Integrating community-based TB control programmes with nonstigmatised health care programmes or primary health care Disseminating information and encouraging compliance
Combining two diseases or activities makes surveillance more cost-effective Combining with a non-stigmatised disease or integrating with PHC programme increases social acceptability of treatment Patients, providers and the community are involved in communication and discussion
General support
Informal/formal
Direct observation of treatment
Formal/informal
Recognition of adverse effects and tracing of patients who interrupt treatment
Formal
Documentation of progress and outcome
Formal/informal
Family support, peer groups and community volunteers to support patients throughout treatment CHW, family member or other community member to observe patients taking medication CHW to recognise and refer patients with adverse drug reactions Community volunteers to keep in contact with patients over the entire treatment period Formation of VHW associations, use of manuals and the contribution of school children or family members to read instructions
village health workers.
Messages should address individual benefits of treatment completion Known side effects of treatment should be explained Psychological support and assistance in the delivery and collection of sputum samples, results and drugs The majority of innovative approaches are in the area of community-based TB control
Illiterate community volunteers from low socio-economic groups provide services to favour the disadvantaged in the community
CHW
community health worker; PHC
primary health care; VHW
INCREASING COMMUNITY AWARENESS
The common symptoms of TB (cough and fever) are non-specific, overlapping with those of other common endemic diseases such as respiratory infections.5 TB is also often perceived as a chronic, incurable disease. Raising awareness of the signs and symptoms of a disease and the availability and benefits of treatment has been successfully carried out by a variety of community members through formal and informal arrangements.6–9 These include village leaders, school teachers, CHWs, religious leaders, trade unions and women’s organisations. A strategy in which knowledge of leprosy was passed through school children to illiterate parents in India may also be applicable to
TB.10 Success was most apparent where the mass media complemented the messages given by community members.8 These examples indicate that TB control programmes could take advantage of existing community resources to enhance community knowledge of TB. Although peer educators have been successful in some settings,11,12 low prevalence and the lack of a homogenous TB ‘community’ restrict this approach to high prevalence populations of high population density. It is important to note that awareness campaigns, however well disseminated, will only have a positive impact if diagnosis is available, treatment is accessible and there are no other barriers preventing people from receiving treatment.
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403
CASE DETECTION AND REFERRAL FOR DIAGNOSIS
There are many people with TB who do not come forward for treatment. Community-based case finding may help control programmes achieving high cure rates to make progress towards the World Health Organization (WHO) target of 70% case detection. As an ongoing process, unlike mass screening, community-based surveillance has been found to be sustainable, the key being that CHWs know their own people.9 There are examples of programmes that combine surveillance of two diseases in one programme: in Ethiopia and Mali guinea worm is combined with measles and in other African countries with neonatal tetanus.9 In programmes achieving high cure rates, once suspected cases have been identified, CHWs can continue their involvement by referring TB suspects for diagnosis, delivering sputum specimens to health care facilities and collecting results. Surveillance has been successfully combined with distribution of curative drugs, stool collection and health education in guinea worm programmes; costs were estimated to be $100–200 per village per year.13 Case detection is a vital element of a TB control programme. These examples illustrate the possibility of combining surveillance activities with other disease control efforts and involving community workers in a multi-activity role. It is important to clearly define the role of the CHWs in each setting. Diagnosis and prescription of treatment must remain in the domain of the health professionals. Maintaining this clear distinction of roles in TB control has the advantage of minimising the conflict and non-co-operation between CHWs and health professionals that can occur in programmes where roles and tasks are less well defined.14,15
2 communication between drug distributors and stores is essential;24 3 programmes planned by the community are more likely to be sustainable than those planned by health care professionals; the higher the level of participation the higher the success of the programme, provided that basic supervision is built into programme implementation;24 4 home visits for drug delivery, while apparently very convenient, are not always welcomed by patients with stigmatised diseases such as TB;25 5 community members are able to evaluate the appropriateness of house-to-house versus central distribution and change their strategy accordingly.24 In areas where TB control efforts are still hampered by patients’ lack of access to regular drug supplies, provision should be the main focus of community-based TB programmes and is likely to be the most successful. Programmes must have political support to ensure a regular drug supply, health professionals’ support to maintain good communication with community workers, and community support and involvement in the planning process, monitoring and evaluation of the programme to ensure sustainability.
ADDRESSING STIGMA
Direct approach Stigma is a barrier that presents a serious obstacle to successful TB control. Health-seeking behaviour is made up of a balance of costs and benefits to the patient. The benefits of getting well are unlikely to out-weigh the costs of social and family rejection and loss of employment and accommodation at the early stages of the disease. A direct approach to address stigma in a society involves understanding and addressing the beliefs and attitudes of the community towards the disease through qualitative research and awareness campaigns. A number of leprosy control and HIV/AIDS programmes have been successful in reducing stigma using the direct approach. Three strategies have been identified which could be applied to TB programmes: 1 involvement of patients, providers and the community in communication and discussion of leprosy in India;26 2 the use of ‘home care volunteers’ to disseminate information about AIDS in communities in Zambia;27 and 3 the use of messages developed from the results of qualitative research into attitudes towards leprosy, to encourage a favourable attitude towards leprosy patients in the Philippines.28 The employment of these strategies should be considered to increase coverage of TB cases in areas where stigma is marked and treatment coverage low.
ACCESS TO DRUGS
All long-term treatments, including successful TB control, require an uninterrupted drug supply. Many health care programmes name irregular drug supplies as the main reason patients are unable to complete treatment.16,17 The distribution of curative medications has been found to be the most acceptable, effective and sustainable function of a CHW, providing supplies are adequate. It was seen to empower the community by providing access to treatment, to enhance the status of the CHW and to address the true needs of communities. Communities attach a higher value to those who give palliative and curative care and a lower value to CHWs who only give preventive and promotive care.18–23 Practical lessons that have been learnt from community-based distribution programmes are the following: 1 programmes are dependent on good drug supplies at central stores down to district and health centre levels;24
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Indirect approach An indirect method aims to lessen the effect of stigma on health services utilisation and to improve treatment adherence without directly addressing community attitudes but by creating more socially accessible services. Examples from selected programmes have shown that, by associating the stigmatised disease with a non-stigmatised disease, treatment is found to be more acceptable. Using one approach, family planning was integrated into the primary health care system in Pakistan, resulting in improved social accessibility for women.29 Alternatively, the confidence of the community in health workers has been increased through provision of simple cure of intestinal parasitic infections, which has resulted in higher acceptance of family planning.30 TB control programmes should thus consider the benefits of integration with a non-stigmatised disease control programme.
relapse or drug resistance. Community members already directly involved with TB patients should collaborate with health workers to provide patients with accurate information regarding length of treatment and known side-effects. General support As they are familiar with their patients and in close proximity to them, community members are well suited to the role of supporter. In leprosy control and AIDS care programmes, home visits by community members and self-help groups are two strategies used to support patients treated in the community. Volunteers from low socio-economic groups were willing to support patients in the community without financial remuneration and only limited benefits.27 Peer groups were beneficial in leprosy control and AIDS care.31 In leprosy control programmes in areas of low disease prevalence, residential camps were established to facilitate group meetings. Sharing fears, beliefs and experiences with other members of the group was very beneficial (Dr V Pannikar, Leprosy Control Programme, WHO, personal communication). Family support was vital in achieving compliance among pregnant women taking iron supplementation.16 Support for patients to promote adherence to treatment should be built into all TB control programmes. In addition to enlisting family support, community members can be approached to volunteer as house-tohouse supporters for TB patients, and the patients themselves encouraged to establish self-help groups. Help may be required to provide accommodation for meetings, which may include residential stay in areas of low prevalence or where patients are scattered over a wide geographical area. Direct observation of treatment One element of the WHO-recommended TB control strategy DOTS (directly observed therapy shortcourse) for all smear-positive TB patients is direct observation of treatment.32 In many areas this requires patients to be admitted to hospital for the first 2 months of treatment, or to travel daily or three times weekly to a health centre for observation. This can result in considerable social costs to the patient and an economic burden on the family. Organised community groups, peer groups, chosen members of the community and family members all have the potential to act as supervisors to ensure completion of treatment and cure. Examples from other health care programmes, however, are limited. Readers are referred to innovative approaches to community-based DOTS strategies already in progress.27,33–36 Recognising adverse effects and tracing patients who interrupt treatment Patients suffering severe side-effects are likely to interrupt their treatment. The use of CHWs to recog-
SUPPORT AND MOTIVATION OF PATIENTS
TB treatment is long, symptoms can subside before course completion, and the drugs prescribed can give side-effects. Patients who are aware of their diagnosis and have come forward for treatment require support and motivation to continue. Community members are most conveniently placed to help support and motivate patients during their treatment regimens. Three ways of motivating patients to adhere to medication are discussed: raising awareness of the benefits of completing treatment, providing general support, and directly observing patients taking their medication. Raising awareness Many health programmes have made use of informal as well as formal community involvement to disseminate messages aimed at motivating community members. Examples from leprosy control programmes have shown that school teachers, students and scouts successfully provided health education, motivating patients to continue treatment.6 School children have been successful in encouraging families to practise hand washing and use latrines.7 In the formal sector, CHWs were more suitable than physicians as educators to increase compliance in guinea worm eradication programmes.9 Lessons from sanitation programmes indicate the importance of the content of the messages and a focus on individual benefits rather than ideal behaviours or community benefits.7 Programmes aimed at motivating pregnant women to take iron supplementation found that prior knowledge of length of treatment and known side-effects resulted in better compliance.16 TB programmes could use a wide variety of community members to help spread messages to TB patients to raise awareness of the benefits of completing treatment. The messages should contain advice encouraging patients to complete treatment in order to restore full participation in society and prevent
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nise adverse drug reactions was very helpful in onchocerciasis programmes.24 Recognition and referral enabled the patients to continue treatment using alternative drug regimens. Recognition of adverse effects is especially important if thiocetazone is used in populations with high HIV prevalence.32 Community-based vaccination programmes in Bangladesh, using illiterate, low-income urban women to keep a close contact with mothers over a long period, have achieved 90% full vaccination coverage in their areas. Adequate supervision, using one supervisor for 30 volunteers, was an important component in its success.37 Tracing patients who interrupt treatment in developing countries remains problematic. Communitybased TB supervisors maintaining close contact with patients can be more efficient than health services staff in tracing TB patients who interrupt treatment. Documentation of progress and outcome Information collection and recording are a vital component of TB control programmes. Involving communities in TB control will inevitably mean transferring some of this to community members. In many primary health care and disease control programmes, accurate and timely record keeping has been problematic.24,38,39 Nevertheless, some examples of innovative solutions may be applied to TB control: 1 the use of manuals, including record keeping to enable illiterate or semi-literate community members to keep records accurately, using pictures and symbols to replace word and numbers;40 2 the formation of VHW associations9 to provide mutual support and peer pressure for record completion; 3 the use of school children or literate family members or neighbours to read instructions and fill in records.9 The decentralisation of TB control services may not necessarily be hampered by a lack of literate community members if these strategies are employed.
attrition rates if they come from the community, are identified and selected by the community, and are resident in the community.15,22 ‘Selected by the community’ in many instances refers to selection by community leaders alone, who tend to favour their own friends and relatives; a high proportion of these come from dominant lineage.41–43 While literacy is a pre-requisite for guinea worm programmes in Nigeria,9 illiterate, low cast women have been recruited in many countries, with the advantage that they reach other women of the same socioeconomic status, thus improving equity of service delivery.9,44,45 When selection of CHWs is through dominant lineage, however, the CHWs tend to ignore the poor and favour the better off. 42 Another criteria for selection is gender. Women chosen as CHWs have been found to be more diligent and less likely to be motivated by ambition or the hope of material reward. In Burkina Faso, both men and women were recruited as CHWs, but it was found to be important that the community workers came from the same ethnic group.9 Selection of CHWs for TB control must take into account existing community structures, ethnic groups and gender, and above all they must involve TB patients. Literacy, however, need not be a pre-requisite. Motivation Factors that play a vital role in the motivation of CHWs are support from health services staff and the community, supervision and training, adequate supplies, and a reasonable activity level expected of the worker.14 A review of financial incentives identified three sources: the government, non-governmental organisations and the community itself. Sustainability has been found to be problematic in all three approaches.46 When deciding on types of motivation for CHWs, TB control programmes should ensure that strategies can be sustained in the long term and provide sufficient incentive for CHWs to continue to work diligently. This will depend on both the availability of long-term human and financial resources, and political, health service staff and community support. General requirements of a successful CHW scheme Large scale CHW schemes rely on a ‘traditional authoritarian structure and political commitment that invites and stimulates voluntary effort’.14 A strong health infrastructure with plenty of young, educated, unemployed men and women and religious and ethical values compatible with voluntary work are additional requirements. Voluntary work must be seen as legitimate for middle-class women, and there should be a long history of community involvement.22 Small scale programmes, on the other hand, require a good system of supervision, local political commitment, adequate supplies, charismatic people to drive the programme and community willingness
COMMUNITY HEALTH WORKER PROGRAMMES
General lessons learnt through the evaluation and review of CHW programmes in the 1970s and 1980s, of particular use to planners of TB control programmes, include recruitment, motivation and general requirements for successful CHW programmes. Recruitment Many community-based schemes have failed to recognise and use existing systems, leaving behind them a graveyard of inactive community-based committees and organisations. When recruitment is necessary, CHWs show higher levels of acceptance and lower
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to participate in making it a success.14 The main constraint to enlarging programmes was the necessary shift of power from local politicians, policy makers and health professionals to the community. In view of the criteria for successful large scale programmes, the involvement of CHWs in TB control programmes in most countries should begin on a small scale. Well-designed programmes will involve local political factions, health professionals and communities, especially TB patients, in the planning process. A regular drug supply should be guaranteed from central to community level, and supervision of CHWs should be in-built. Acknowledgements
We are grateful to the following people for their helpful comments: Dr Patricia Hudelson, WHO, Geneva, Dr Peter Gondrie and Dr Jeroen van Gorkom, KNCV, The Netherlands, Dr John Walley, NIH, Leeds, Jessica Ogden and Sharon Huttly, London School of Hygiene and Tropical Medicine. The views expressed by Dr Maher are not necessarily those of the United Kingdom Department for International Development.
References
1 McKeown T. The modern rise of population. London: Edward Arnold, 1976. 2 Murray C J, Styblo K, Rouillon A. Tuberculosis in developing countries: burden, intervention and cost. Tubercle Lung Dis 1990; 65: 6–24. 3 Maher D, Hausler H P, Raviglione M C, et al. Tuberculosis care in community care organisations in sub-Saharan Africa: practice and potential. In J Tuberc Lung Dis 1997; 1: 276–283. 4 Maher D, Gondrie P, van Gorkom J, Raviglione M. Community contribution to tuberculosis control, past, present and future. Int J Tuberc Lung Dis 1999; 3: 762–768. 5 Liefooghe R, Baliddowa J B, Kipruto E M, Vermeire C, de Munynck A O. From their own perspective: a Kenyan community perception of tuberculosis. Trop Med Int Health 1997; 2: 809–821. 6 Kumar A, Thangavel N, Durgambal K, Anabalagan M. Community leaders involvement in leprosy health education. Int J Lep 1984; 56: 901–911. 7 Bateman O M, Jahan R A, Brahman S, Zeitlyn S, Laston S. Prevention of diarrhoea through improving hygiene behaviours: the Sanitation and Family Education (SAFE) pilot project experience. Dhaka: CARE/International Centre for Diarrhoeal Disease Research, Bangladesh. 1995; publication no. 42. 8 Garfield R, Vermund S H. Health education and community participation in mass drug administration for malaria in Nicaragua. Soc Sci Med 1986; 22: 869–877. 9 Cairncross S, Braide E I, Bugri S Z. Community participation in the eradication of guinea worm disease. Acta Trop 1996; 61: 121–136. 10 Bhore P D, Bhore C P, Powar S, Nade A L, Kartikeyan S, Chatuvedi R M. Child to parent education: a pilot study. Ind J Leprosy 1992; 64: 51–57. 11 Visrutaratna S, Lindan C P, Sirhorachai A, Mandel J S. ‘Superstar’ and ‘model brothel’: developing and evaluating a condom promotion programme for sex establishments in Chiang Mai, Thailand. AIDS 1995; 9 (Suppl 1): S69–S75. 12 Mbugua I. Kenya: creating a network of youth educators. People 1989; 16: 24–25. 13 O’Neill K. Community-based surveillance: a critical examination of nine case studies. In: Cairncross S, Braide E I, Bugri S Z, eds. Community participation in the eradication of guinea worm disease. Acta Trop 1996; 61: 121–136.
14 Walt G, Perera M, Heggenhougen K. Are large scale volunteer community health worker programmes feasible? The case of Sri Lanka. Soc Sci Med 1989; 29: 599–608. 15 Walt G. Community Health Workers: policy and practice in national programmes; a review with selected annotations. EPC publication no. 16. London, UK: London School of Hygiene and Tropical Medicine, Spring 1988. 16 Galloway R, McGuire J. Determinants of compliance with iron supplementation: supplies, side effects or psychology? Soc Sci Med 1994; 39: 381–390. 17 Farmer P, Robin S, Ramilus S L, Kim J Y. Tuberculosis, poverty and ‘compliance’: lessons from rural Haiti. Semin Respir Infect 1991; 6: 254–260. 18 Stone L. Primary Health Care for whom? Village perspectives from Nepal. Soc Sci Med 1986; 22: 293–302. 19 Jaju V. Role of the village health worker—a glorified image. In: Jayarao K S, Patel A J, eds. Under the lens: health and medicine. Medico Friend Circle. New Delhi, India: New Delhi Voluntary Health Association of India, 1986. 20 Connolly C, Dunn L. Development of appropriate methods for sustaining rural health motivators, Research paper 20, University of Swaziland, 1986. In: Walt G, ed. Community Health Workers: policy and practice in national programmes; a review with selected annotations. EPC publication no. 16. London, UK: London School of Hygiene and Tropical Medicine, Spring 1988. 21 Enge K. Evaluation: Health promotor programs, Ministry of Health, Peru 1984, Management Sciences for Health, Boston USA. In: Walt G, ed. Community Health Workers: policy and practice in national programmes; a review with selected annotations. EPC publication no. 16. London, UK: London School of Hygiene and Tropical Medicine, Spring 1988. 22 Chauls D. Volunteers who work: the community health care project in Burma. Int Quart Com Health Ed 1982; 3: 249–266. 23 Curtale F, Siwakoti B, Lagrosa C, La Raja M, Guerra R. Improving skills and utilization of community health volunteers in Nepal. Soc Sci Med 1995; 40: 1117–1125. 24 UNDP/World Bank/WHO Special Programme for Research and Training in Tropical Diseases 1996. Community directed treatment with Ivermectin: report of a multi-country study. TDR/AFR/RP/96-1. Geneva, Switzerland: WHO, 1996. 25 Hampton J. Uganda: TASO: living positively with AIDS. Children Worldwide 1993; 20: 20–22. 26 Gershon W, Scrinivasan G R. Community based rehabilitation: an evaluation study. Lepr Rev 1992; 63: 51–59. 27 Blinkoff P, Bukanga E, Syamalevwe B, Williams G. Under the Mupundu tree: volunteers in home care for people with HIV/ AIDS and tuberculosis in Zambian copperbelt. Strategies for Hope, No. 14. London UK: Actionaid, 1999. 28 Paz C, Medina I, Ventura E. A multidisciplinary study of stigma in relation to Hansen’s disease among the Tausug in the Philippines. Social and Economic Research Project Reports, no. 7. Geneva, Switzerland: WHO, 1990. 29 Barzgar M A, Sheikh M R, Bile M K. Female health workers boost primary care. World Health Forum 1997; 18: 202–210. 30 JOICFP. From worms and family planning to development of the people: a case of technical assistance through integrated family planning projects. Internal report. Tokyo, Japan: Japanese Organisation for International Co-operation in Family Planning, 1982. 31 Olukoya A A. Approaches to AIDS education for the grassroots in Nigeria. Hygie 1990; 9: 32–33. 32 Maher D, Chaulet P, Spinaci S, Harries A. Treatment of tuberculosis: guidelines for national programmes. 2nd ed. WHO/ TB/97.220. Geneva, Switzerland: WHO, 1997. 33 Chowdhury A, Chowdhury S, Islam N, Islam A, Vaughan P. Control of tuberculosis by community health workers in Bangladesh. Lancet 1997; 350: 169–172. 34 Wilkinson D, Davies G R. Coping with Africa’s increasing tuberculosis burden: are community supervisors an essential
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35
36
37
38
39 40
component of the DOT strategy? Trop Med Int Health 1997; 2: 700–704. Edginton M E. Tuberculosis patient care decentralised to district clinics with community-based directly observed treatment in a rural district of South Africa. Int J Tuberc Lung Dis 1999; 3: 445–450. Squires S B, Wilkinson D. Strengthening ‘DOTS’ through community-care for tuberculosis. Observation alone isn’t the key. BMJ 1997; 315: 1395–1396. Hughart N, Silimpari D R, Khatum J, Stanton B. A new EPI strategy to reach high-risk urban children in Bangladesh: urban volunteers. Trop Geogr Med 1992; 44: 142–148. Richards F, Gonzales-Peralta C, Jallah E, Miri E. Communitybased invermectin distributors: onchocerciasis control at the village level in Plateau State, Nigeria. Acta Trop 1996; 61: 137–144. Rao P S. Retrieval of ‘left the area leprosy cases’ by cross notification. Indian J Lepr 1986, 58: 420–423. Valasques-Guerra R, Aguirre E, de la Cruze D, Fuentes F, Terborgh A. When your trainees don’t read. A manual for reproductive health trainers. Arlington, VA, USA: Development Associates, 1996; xxii: 125.
41 Jobert B. Populism and health policy: the case of community health volunteers in India. Soc Sci Med 1985; 20: 1–28. 42 Quadeer I. Social dynamics of health care: the CHW scheme in Shahdol District. Socialist Health Review 1985; Sept: 74–83. In: Walt G, ed. Community Health Workers: policy and practice in national programmes; a review with selected annotations. EPC publication no. 16. London, UK: London School of Hygiene and Tropical Medicine, Spring 1988. 43 Cham K, MacCormack C, Touray A, Baleh S. Social organisation and political factionalism: PHC in the Gambia. Health Policy Plan 1987; 2: 214–226. 44 Mukhopadhayay M. Human development through primary health care: studies in India. In: Morley D, Rohde J E, Williams G, eds. Practising health for all. Oxford, UK: Oxford University Press, 1983: 133–144. 45 Berman P P. Village health workers in Java, Indonesia: coverage and equity. Soc Sci Med 1984; 19: 411–422. 46 De Zoyza I, Cole-King S. Remuneration of the community health workers: what are the options? World Health Forum 1983; 4: 125–130.
RÉSUMÉ
La décentralisation des mesures de lutte antituberculeuse en dehors des institutions de soins en attelant la contribution de la collectivité pourrait accroître l’accès à une prise en charge effective de la tuberculose (TB). Cette revue des initiatives de soins de santé basés sur la collectivité dans les pays en développement donne des exemples des leçons que la contribution de la collectivité à la lutte antituberculeuse a tiré des programmes de soins de santé. Les bases de données Medline et Popline furent les sources d’information, de même que les discussions avec des experts de la santé communautaire. Les barrières au succès de la lutte antituberculeuse proviennent de facteurs biomédicaux, sociaux et politiques. Les leçons sont d’application aux problèmes du niveau de conscience limité de la TB et des avantages de son traitement ainsi que de la stigmatisation, de l’accès limité aux médicaments, du dépistage et de la motivation à poursuivre le traitement. L’expérience d’autres programmes suggère l’existence d’un potentiel d’expansion de l’implication, à la fois formelle et informelle, de la collectivité dans la lutte contre la TB. L’implication informelle de la collectivité
comprend la transmission de messages pour encourager les gens à se présenter pour traitement et pour encourager ceux atteints de TB à poursuivre ce traitement. Un soutien psychologique et logistique est fourni aux patients pour compléter leur traitement par une grande variété de membres de la collectivité. Les leçons provenant d’une implication formelle de la collectivité indiquent que les programmes devraient concentrer leur attention sur l’affirmation que le traitement est accessible. Cette activité pourrait être combinée avec une variété d’activités complémentaires : dissémination de messages pour augmenter le niveau de conscience et pour promouvoir l’adhésion thérapeutique, la recherche des patients qui ont interrompu le traitement, le dépistage des effets collatéraux et la détection des cas. En général, les programmes devraient tenir compte des structures politiques et culturelles existantes pour la planification des programmes de lutte contre la TB basés sur la collectivité. Le soutien politique, le soutien des professionnels de la santé et de la collectivité sont vitaux et le planning doit impliquer ou même provenir des patients TB eux-mêmes.
RESUMEN
Las medidas de descentralización del control de la tuberculosis (TB) más allá de las medidas sanitarias, incluyendo la contribución de la comunidad, puede aumentar el acceso a la atención eficaz de la tuberculosis. Esta revisión de iniciativas de atención de salud basada en la comunidad en los países en desarrollo nos da ejemplo de lecciones para la contribución de la comunidad al control de la TB, a través de programas de salud. Las fuentes de información fueron las bases de datos de Medline y Popline, así como las discusiones con expertos en salud de la comunidad. Las barreras para el éxito en
el control de la tuberculosis se originan en factores biomédicos, sociales y políticos. Las enseñanzas son relevantes en cuanto a los conocimientos limitados de tuberculosis y los beneficios del tratamiento, estigmas, acceso restringido a las drogas, búsqueda de casos y motivaciones para continuar el tratamiento. La experiencia de otros programas sugiere potenciar la expansión del compromiso de la comunidad en controles formales e informales de la TB. El compromiso informal de la comunidad incluye la difusión de mensajes para estimular a la gente a incorporarse al
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tratamiento y a los pacientes de TB para continuar con el mismo. Un amplio grupo de miembros de la comunidad provee un apoyo psicológico y logístico a los pacientes para completar su tratamiento. Las enseñanzas del compromiso formal de la comunidad indican que los programas deben orientarse para asegurar que el tratamiento sea accesible. Esta actividad puede combinarse con varias actividades complementarias : difundir mensajes para aumentar el conocimiento y promover la
adhesión, orientar a los pacientes que interrumpen el tratamiento, reconocer los efectos adversos y detectar los casos. Los programas deben conocer las políticas existentes y las estructuras culturales para planear programas de control de TB basados en la comunidad. El apoyo político y el de los profesionales de la salud y de la comunidad son vitales y la planificación debe incorporar a los mismos pacientes de TB.
