Value of community participation in disease surveillance

Introduction

This study evaluates the impact and effectiveness of acute flaccid paralysis (AFP) surveillance systems in Niger. It examines how social and cultural factors affect the reporting of disease symptoms within various communities. The authors suggest that the operational challenges faced by epidemiologists in countries like Niger could be partially overcome by greater utilisation of a community-based surveillance (CBS) approach. This approach is facilitated through training and awareness-raising exercises that help build upon internal social capital and relationships between epidemiologists and the community.

Key Findings

The study identified four major barriers to disease surveillance generated by the country characteristics of Niger: transportation, communication, trained and committed staff, and record keeping. Transportation posed a major challenge for widespread and thorough epidemiological monitoring in rural areas. Medical staff are generally without the means to travel regularly to remote regions of the country - less than one-third of personnel had means of transportation. Communication networks in Niger are fairly limited and many rural areas remain without regular telephony service; this includes most rural health centres. The retention rate of previously trained staff is low and turnover rates for nurses are high, as many women move periodically with their families in search of better economic opportunities. The result is many un- or improperly diagnosed cases of AFP. The final barrier is the lack of a systematised record-keeping system in most rural health centres, resulting in an inability to provide data for proper epidemiological monitoring.

The authors proceed on the basis that in poor and underserved areas, community participation can improve health. They seek to evaluate this assumption using several methods. They used structured interviews to identify what nurses thought were the major barriers to AFP surveillance: 100% cited a lack of community awareness, 87% cited a lack access/distance from health services, 75% cited cultural beliefs (these include a widespread predisposition to take paralysed children to traditional healers before bringing them to medical centres, which delays AFP identification), 75% cited a shortage of staff, and 62% cited a lack of training and qualification.

The authors then evaluate the distribution of reported AFP cases in 1999 by source. Those that were reported by community health agents or parents were referred to as community-based surveillance (CBS) cases, while those identified "fortuitously" - without the conscious decision of the parents to report the case - were referred to as non-CBS cases. These cases were discovered as a result of routine in-house consultations (for general health or other purposes) by health staff, or at national immunisation days (NIDs). Of the total of 33 cases in the target area in 1999, 18 or 54% were identified through CBS, 36% of the total cases having been identified by parents and 18% having been identified by health agents. Under the non-CBS heading, 30% of the total cases came about as a result of consultations and 15% resulted from presentation at NIDs.

The authors feel that, given these numbers and the barriers to surveillance already identified, building up a CBS system should be a priority for health agencies working in Niger and similar regions. They then identify several factors they believe can contribute to a strengthened system. These factors include the presence of other development projects and programmes onto which AFP surveillance training and logistical functions could be piggybacked. Creating partnerships with pre-existing in-community operations and using project staff as awareness agents could help improve access and reduce reporting times.

Social capital is also an important factor in any CBS system, and the authors suggest that introduction of AFP surveillance training to existing grassroots and community organisations could also be an effective way to improve surveillance levels. Furthermore, building partnerships with local religious and tribal leaders and convincing them of the utility of AFP surveillance could also be beneficial. The authors also address the more difficult and controversial challenge of partnering with traditional healers, who are often the first to see cases of AFP but who have a vested interest in preserving their sphere of influence over these cases. Finding ways to co-opt and partner with these healers will thus be challenging and may even require some form of compensation.

Finally, the authors identify past experiences as a final contributing factor to the success of a CBS system. Identifying community members active in earlier eradication projects such as smallpox or guinea worm campaigns and enlisting them can also be an efficient use of resources within a region.

The authors conclude by identifying two essential steps for developing better CBS systems in Niger and other, similar African countries. The first step is to recruit, train, supervise, and motivate a corps of community health agents who will be able to take health information to their fellow villagers and townspeople. Community agents should both motivate parents to report cases and be prepared to report cases on their own in cases of parental hesitation. The second step is to develop linkages and partnerships among various community leaders and groups to improve the overall sensitivity of AFP surveillance at the local level. All personnel who are working in the health care field should be aware of the AFP surveillance project and should be motivated to partner and communicate with epidemiologists.