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Implementing the WHO Stop TB Strategy: A Handbook for National Tuberculosis Control Programmes. Geneva: World Health Organization; 2008.

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Implementing the WHO Stop TB Strategy: A Handbook for National Tuberculosis Control Programmes.

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26Involvement of communities and patients in tuberculosis care and prevention

Since the 1978 Alma Ata Declaration, the participation of people in, and their contribution to, the development of health systems has been recognized as central to primary health care and accepted as an essential element of many public health interventions. The health reforms of the 1990s have given somewhat less attention to community participation and social values in health system development, focusing more on technical, economic and managerial factors.

The challenges posed by major epidemics such as HIV/AIDS, TB and malaria, and the role civil society has played in helping individuals and families to cope with them, have certainly contributed to make people and health policy-makers more aware of the essential and complementary role that communities can play in ensuring high-quality patient care.

Effective partnerships between health services and the community may facilitate access by bringing services to people's homes, and reducing the cost of care-seeking for patients and health services as well as the cost of workload for staff. Carefully designed community and/or patient involvement initiatives also facilitate patient and community empowerment. Through the involvement of local communities, education on relevant health issues and stimulation of change in health-related behaviour, communities become increasingly knowledgeable and self-reliant.

The empowerment of patients and communities requires knowledge of individual rights and responsibilities, the ability to exercise them at social and political levels, access to information and the ability to utilize knowledge and skills as needed. The Patients' charter for tuberculosis care (the Charter) sets out the rights and responsibilities of patients. The rights concern care, dignity, information, choice, confidence, justice, organization and security. The responsibilities cover sharing information, adherence to treatment, contributing to community health and showing solidarity.

The Charter identifies ways in which all stakeholders may work together in an open and positive relationship. While its basic principles are universal, cultural differences may influence the roles expected of health professionals and patients, and these should be taken into consideration when adapting international recommendations to the national setting. The establishment of an effective collaboration between health services and society often requires building the capacity of communities and civil society organizations, fostering a continuous dialogue and involving them from the start in designing, planning, implementing and evaluating community initiatives.

Effective community and patient involvement yields positive results, such as improved case-finding and treatment outcomes, raised awareness concerning the nature of the disease and the availability of effective treatment free of charge, or general health promotion. To be successful, community and patient involvement initiatives should be designed and implemented with community members involved as equal partners.

26.1. Key steps in implementing initiatives for community and patient involvement

26.1.1. Policy guidance

The development of guidance for policy involves:

  • setting up a task force to conduct a situation analysis and draft policy guidance;
  • testing policy guidance in demonstration areas.

In countries with no existing initiatives to involve communities, i.e. where the initiative to set up such activities comes from the central level, it is important to have policy guidance based on a national situation analysis. This approach promotes community ownership of the initiative, and encourages the community's active involvement and shared responsibility for health.

The policy guidance should describe a process of involvement of local communities and tuberculosis patients, and should introduce the use of indicators of community involvement, such as participation in planning, support and evaluation of the intervention, role in improvement of case detection and treatment adherence, impact on stigma and discrimination, promotion of healthy lifestyles and quality of care as perceived by patients and their families.

26.1.2. Advocacy and communication

Activities for advocacy and communication involve:

  • advocating at central level and locally with different stakeholders (health managers, politicians, community leaders, etc.) for TB control and community involvement;
  • designing communication tools tailored to the local context.

Presenting the initiative to relevant officials at the central and local levels is an important step in setting up community-based activities. This encourages involvement of all stakeholders as well as political and financial support. Communication tools for promoting messages on TB will depend on the target population and the availability of resources. To ensure that the content of the communication material is tailored to the local context, it should be developed with the community and pretested in the target population (see also Chapter 27).

26.1.3. Capacity building

Building the capacity of human resources involves:

  • quantifying the shortage in human resources and identifying solutions;
  • developing training material for health staff and local communities and conducting regular training;
  • creating partnerships with ongoing community-based initiatives (NGOs, faith-based organizations, community-based organizations).

Capacity building and training of people involved in the initiative, within and outside the health sector, are essential. Training should take into consideration the roles and responsibilities of different stakeholders. It is important to discuss with the community their future role, with the aim of strengthening both the community and the health system. Cured TB patients are often willing and motivated to be involved in TB control activities such as treatment support and combating TB-related stigma. Setting up partnerships with ongoing community-based initiatives in the area (NGOs, faith- and community-based organizations) has proved, in most countries, to be more sustainable and cost-effective than creating parallel systems.

26.1.4. Addressing special challenges

The challenges of TB/HIV, MDR-TB, and special groups and situations involve:

  • exploring opportunities for the roles of patients and local communities in addressing special challenges.

At national and local levels, experience has shown that community involvement can make a valuable contribution to addressing special challenges such as TB/HIV, MDR-TB, controlling TB among indigenous populations or ethnic minorities, in congregate settings, etc. (see Chapter 25).

26.1.5. Ensuring high-quality services at community level

Ensuring the high quality of services at the community level involves:

  • identifying the range of services available at community level;
  • ensuring an adequate referral system; identifying people (e.g. public health workers, community representatives or volunteers) who will provide a link between health services and local communities/patients;
  • providing regular support to community-based activities.

A routine supervision system to monitor and support the services and care provided at community level should be established. Motivation of the involved community members is encouraged by regular support.

The range of services provided at community level should be tailored to community and patient needs, rather than to the convenience of the health services. In settings where there is no existing community involvement initiative, it is important to identify people who are able to provide an effective link between health services and local communities.

26.1.6. Budget and financing

Measures for budget and financing involve:

  • identifying a comprehensive list of expenditures at all levels related to community involvement;
  • ensuring that sufficient funds are available for community involvement (e.g. ensure that such costs are included in local health budgets).

Resources for community-based activities should come from different sources, and not exclusively from the ministry of health budget. External (such as the Global Fund) and internal sources of funding (local partners providing ongoing support) should also be explored. In settings where the community is involved in a range of health issues and services, duplication of budget lines and activities should be avoided.

26.1.7. Monitoring, evaluation and supervision plan

The development of a monitoring, evaluation and supervision plan involves:

  • defining a set of indicators, separating those to be collected on an ongoing basis and those to be collected every one or two years.

Communities should participate in the assessment of their own contribution and that of the health services. The data collected should be limited to the essential information that will be analysed and used for assessing services and community involvement. Indicators to monitor community involvement should reflect organization, representation, perceived quality of services and sustain-ability. Patient satisfaction, TB-related knowledge and TB-related stigma may be assessed through a KAP (knowledge, attitudes and practices) survey every one or two years.

26.1.8. Operational research

Planning for operational research involves:

  • identifying operational research themes based on local challenges and opportunities (e.g. conducting research on patient satisfaction, documenting good practices).

Operational research may be required to address specific operational issues and improve community involvement. Both qualitative and quantitative research methods should be considered when assessing the outcome of activities as well as perceptions and motivation at the community level.

Key references

  • Bhuyan KK. Health promotion through self-care and community participation: elements of a proposed programme in the developing countries. BMC Public Health. 2004;4:11. [PMC free article: PMC419355] [PubMed: 15086956]
  • Community contribution to TB care: practice and policy. Geneva: World Health Organization; 2003. (WHO/CDS/TB/2003.312)
  • Community involvement in tuberculosis care and prevention Towards partnerships for health Guiding principles and recommendations based on a WHO review. World Health Organization; 2008. WHO/HTM/TB/2008.397. [PubMed: 23785744]
  • Demissie M, et al. Community tuberculosis care through “TB clubs” in rural North Ethiopia. Social Science and Medicine. 2003;56:2009–2018. [PubMed: 12697193]
  • Escott S, et al. Listening to those on the frontline: lessons for community-based tuberculosis programmes from a qualitative study in Swaziland. Social Science and Medicine. 2005;61:1701–1710. [PubMed: 15967558]
  • Khan MA, et al. Cost and cost-effectiveness of different DOT strategies for the treatment of tuberculosis in Pakistan. Health Policy and Planning. 2002;17:178–186. [PubMed: 12000778]
  • Lwilla F, et al. Evaluation of efficacy of community-based vs. institutional-based direct observed short-course treatment for the control of tuberculosis in Kilombero district, Tanzania. Tropical Health and Medicine. 2003;8:204–210. [PubMed: 12631309]
  • Maher D. The role of community in the control of tuberculosis. Tuberculosis. 2003;83:177–182. [PubMed: 12758209]
  • Omaswa F. The “Community TB Care in Africa” Project. International Journal of Tuberculosis and Lung Disease. 2003;7(1):S1–S1(1). [PubMed: 12971646]
  • Quality of care from the patients' perspective. The Hague: KNCV; 2005.
  • Shin S, et al. Community-based treatment of multidrug-resistant tuberculosis in Lima, Peru: 7 years of experience. Social Science and Medicine. 2004;59:1529–1539. [PubMed: 15246180]
  • Singh AA, et al. Effectiveness of urban community volunteers in directly observed treatment of tuberculosis patients: a field report from Haryana, North India. International Journal of Tuberculosis and Lung Disease. 2004;8:800–802. [PubMed: 15182154]
  • The patients' charter for tuberculosis care. Geneva: World Care Council; 2006.
Copyright © World Health Organization 2008.

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Bookshelf ID: NBK310754


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