2: The lived experience and knowledge of communities, community activism and leadership are key triggers and drivers of participatory practice.
Participatory practice is galvanised by, starts from or, if catalysed from outside communities, engages early with community experience, culture, perceptions, and responses to injustice. Community experience and knowledge inform the evidence and analysis used in setting priorities, in joint decision making and in design of services. This implies identifying, investing in and nurturing community level activists from affected groups, and building their facilitation, communication, convening, negotiation, advocacy and leadership capacities and functional skills. Many community health activists do these roles voluntarily. However, their roles are better sustained when linked to employment or income opportunities and recognition for the changes they contribute to.
Participatory planning and action by communities and frontline health workers in Lusaka, Zambia
In 2006, the Lusaka District Health Office (LDHO) and community members in the capital city decided to bring to life the Zambian government policy commitment on community participation in health service planning and delivery.
LDHO in collaboration with public and private health providers provides primary and secondary health services and public health programmes in the city. In 2006, growing public health problems motivated community members, health workers and LDHO to strengthen community-health centre partnership in local health systems. The city faces challenges of poverty, unemployment, poor living and community environments and social practices affecting health and use of health services.
It also has assets for health, however, in the family and community networks and interactions. These assets were seen to be particularly important to meet health challenges and for the neighbourhood health committees (NHCs) set up in the 1990’s to play their role as a mechanism for community participation in planning and delivering health care. While the NHCs involve health workers and local residents elected by the community, in 2005, they were poorly organized for, or involved in their role.
LDHO thus initiated various participatory processes with communities and frontline health workers. Click on the video link adjacent "Building empowered communities for health" to hear from those directly involved.
A health literacy manual was developed, facilitators trained and health literacy activities implemented in the community using participatory reflection and action (PRA) approaches. Community members shared their lived experience, and from this generated their diagnoses and priorities for action on health, including to participate in decisions on and monitor their services.
The community health literacy sessions spread across the city. Communities raised and acted on a range of issues. They mobilised joint action between health workers, communities, the city council and others to clean unsafe environments, to prevent cholera, malaria and other diseases.
They raised frustrations over waiting times and queues. At the same time health workers shared their concerns over the confrontational manner that some people used to claim rights to care. From a position of mutual suspicion and resentment, each began to appreciate the other’s stresses and conditions, and they developed joint approaches to improve services. Every three months those involved would meet to review progress in implementing their action plans. The processes, from first steps of sharing local experience to taking and reviewing progress in actions raised the confidence of community members to be agents of change.
Similar participatory tools were used with members of NHCs and health centre committees (HCCs), bringing information from communities to identify problems and actions in a dialogue between health workers and community members. This had an impact on the health system. Community members became more confident in approaching health workers for information and health workers provided information to them on planning and resource allocation. Community priorities were included in health plans and resources mobilised for joint actions, in areas such as improving public toilets, solid waste management, organising land for nutrition gardens, introducing mobile phone appointments and follow up of clients. Using photovoice, community members and health personnel in HCCs photographed conditions to bring evidence and stimulate dialogue on these issues with other sectors affecting health.
While in 2005 plans and budgets were generally presented by health workers and management, since 2012 where HCCs have been trained and supported, the HCC members themselves present the health centres plans and budgets, lobby for resources for health improvements and report on progress to communities and other stakeholders.
These initiatives that started at particular health centres in Lusaka have since spread across the city and more widely. Evident improvements in conditions for health and health care generated support from the health minister, and the health literacy programme was adopted and is spreading nationally. LDHO is working with NHCs and HCCs in the city to formalise their constitutions and their formal status at national level. The NHCs have strengthened their own exchange of experience and practices, meeting annually for over nine years as a collective of all NHCs in Lusaka.
The experiences in Lusaka point to the potential to confront a growing tide of public health problems, frustration and poor communication through engaging social participation and power in health. There was a shift in perception on health in the community that health is “not just about taking medication but it is about having healthy environment and health relationships. A sustained PRA approach helped to de-mystify planning and budget processes, enabling communities to bring their own evidence and building communication and trust between community members and health workers. While this may not demand significant resources, it does need encouragement, mentorship, feedback, strategic review, supported by committed champions from within the health system. It also needs time. Sustaining the processes over more than a decade in Lusaka was critical to build repeated and deepening cycles of action and learning and to allow for a horizontal spread of practice, as facilitators in one site trained those in others. The confidence gained from steps of progress helped to address service providers’ fear of shifting control to communities and to integrate the processes into the roles and functioning of health centres. The growth in social power and confidence in communities itself became a sustaining factor, keeping the demand for the processes alive in changing times.
From case study by R Loewenson, C Mbwili-Muleya, I Zulu Lishandu.
Photos HCC chairpersons planning at district level © M Daka 2013 and cover page, Zambia health literacy manual