Community Involvement in Tuberculosis Care and Prevention: Towards Partnerships for Health

This World Health Organization (WHO) publication provides a series of recommendations, based on the principles of social justice, for promoting the involvement of people with tuberculosis (TB) and the community in TB care and prevention. The rationale, as outlined here, is that the active participation of communities in TB control allows people with TB, especially among economically poor or vulnerable groups, to be identified and diagnosed more quickly, to receive better-quality care, to become empowered by the opportunity to make decisions about the type of care that best suits them and their community, and to avoid stigmatisation. The recommendations outlined in the document are designed to support health policymakers, patients' groups, and local partners in including community involvement activities in national strategic plans to control TB.

The recommendations identify 8 specific areas that should be considered to promote and implement the involvement of people with TB and communities in TB care and prevention and to strengthen their empowerment in health interventions. For each, principles and recommended actions are provided:

1. policy guidance, initial implementation, and scale-up
2. advocacy and communication: excerpt: "Advocacy is instrumental to influencing authorities and policy-makers....Communication is an instrument for information and dialogue aimed at encouraging people to promote healthy behaviour and assume greater responsibility for their health. Simple, clear and culturally appropriate messages are needed to inform and create awareness...messages will focus on the disease, on available care and on opportunities for people to become actively involved....Effective communication starts with personal communication between health workers and the people with TB, their families and local communities and builds a supportive environment for people who feel ill and may have TB..."
3. capacity-building
4. addressing special challenges in controlling TB
5. ensuring the quality of services provided at the community level
6. budgeting and financing
7. establishing a plan for monitoring, evaluation, and supervision
8. operational research

Annex 1 summarises previous WHO Stop TB research on the community contribution to TB care. Annex 2 summarises a literature review, with references, on community involvement in TB control: how community-based initiatives have been promoted and why they are sustainable. Annex 3 describes some practical experiences: a report on WHO country reviews (Kenya, Malawi, Uganda, Mexico, Bangladesh, Indonesia, and the Philippines) with related methods and lessons learned. Annex 4 is a sample flow chart with a generic process to promote national initiatives on empowering people with TB and communities. The main points for action by national TB programme managers are based on the process of community involvement included in that final Annex. In short:

1. Propose a task force to support initiatives of community involvement, inviting all relevant partners.
2. Advocate for support from national and local leaders throughout the process and follow it up regularly even after launching the initiative. Establish clear and early communication with communities and with all partners and design with them simple education and promotion material.
3. Conduct a situation analysis (or use a recent one) of TB service delivery and discuss how the community contribution can complement the TB programme capacity.
4. Identify all interested partners on the ground, discuss and define their role (especially the role of community volunteers), plan activities, and develop communication and social mobilisation material with them. Create synergy with existing community initiatives.
5. With partners and community representatives, design a practical model of involvement in TB care and prevention. Issues to be addressed include: clearly defining the roles and functions of all partners; ensuring regular contact between health services and community through public health workers and community leaders; encouraging (self-) referral of people with symptoms; ensuring proper care and adherence to treatment; addressing the issue of community and personal motivation (in particular, for community volunteers or treatment supporters); adapting the model to rural and urban settings; and collecting information on community participation through the existing recording and reporting system.
6. Build capacity (health staff, partners, and communities): identify funds to train facilitators who will promote community involvement at the district level and schedule and conduct workshops using training tools that have been designed based on the national guidelines.
7. Prepare an implementation plan and a scale-up strategy starting with implementation and fine-tuning in demonstration areas.
8. Publicly launch the initiative with the participation of national and local authorities to gain public and political support, to share useful information, and to create demand for community-based services. Plan periodic local mass media coverage.
9. Gather and disseminate lessons learned in demonstration areas. An ongoing evaluation of impact and of the quality of care will provide the information necessary to develop and maintain community involvement in TB care and prevention.