Piloting a participatory, community-based health information system for strengthening community-based health services: findings of a cluster-randomized controlled trial in the slums of Freetown, Sierra Leone.

BACKGROUND: Although community engagement has been promoted as a strategy for health systems strengthening, there is need for more evidence for effectiveness of this approach. We describe an operations research (OR) Study and assessment of one form of community engagement, the development and implementation of a participatory community-based health information system (PCBHIS), in slum communities in Freetown, Sierra Leone. METHODS: A child survival project was implemented in 10 slum communities, which were then randomly allocated to intervention (PCBHIS) and comparison areas. In the 5 PCBHIS communities, the findings from monthly reports submitted by community health workers (CHWs) and verbal autopsy findings for deaths of children who died before reaching 5 years of age, were processed and shared at bimonthly meetings in each community. These meetings, called Community Health Data Review (CHDR) meetings, were attended by community leaders, including members of the Ward Development Committee (WDC) and Health Management Committee (HMC), by the CHW Peer Supervisors, and by representatives of the Peripheral Health Unit. Following a review of the information, attendees proposed actions to strengthen community-based health services in their community. These meetings were held over a period of 20 months from July 2015 to March 2017. At baseline and endline, knowledge, practice and coverage (KPC) surveys measured household health-related behaviors and care-seeking behaviors. The capacity of HMCs and WDCs to engage with the local health system was also measured at baseline and endline. Reports of CHW household contact and assessments of CHW quality were obtained in the endline KPC household survey, and household contacts measured in monthly submitted reports were also tabulated. RESULTS: The self-assessment scores of WDCs' capacity to fulfil their roles improved more in the intervention than in the comparison area for all six components, but for only 1 of the 6 was the improvement statistically significant (monthly and quarterly meetings in which Peer Supervisor and/or CHW supervision was an agenda item). The scores for the HMCs improved less in the intervention area than in the comparison area for all six components, but none of these differences were statistically significant. Topics of discussion in CHDRs focused primarily on CHW functionality. All three indicators of CHW functioning (as measured by reports submitted from CHWs) improved more in the intervention area relative to the comparison area, with 2 out of 3 measures of improvement reaching statistical significance. Five of 7 household behaviors judged to be amenable to promotion by CHWs improved more in the intervention area than in the comparison area, and 2 out of the 5 were statistically significant (feeding colostrum and appropriate infant and young child feeding). Four of the 6 care-seeking behaviors judged to be amenable to promotion by CHWs improved more in the intervention area than in the comparison area, and 1 was statistically significant (treatment of diarrhea with ORS and zinc). None of the findings that favored the comparison area were statistically significant. CONCLUSIONS: This study was implemented in challenging circumstances. The OR Study intervention was delayed because of interruptions in finalizing the national CHW policy, two separate cholera epidemics, and the Ebola epidemic lasting more than 2 years. Weaknesses in the CHW intervention severely limited the extent to which the PCBHIS could be used to observe trends in mortality and morbidity. Nonetheless, the positive results achieved in the area of functionality of the CHW intervention and community structure capacity are encouraging. Results suggest there is value in further methodologically rigorous investigations into improving community-based health system functioning through a similar approach to community engagement.

Engaging communities in collecting and using results from verbal autopsies for child deaths: an example from urban slums in Freetown, Sierra Leone.

BACKGROUND: Verbal autopsies (VAs) can provide important epidemiological information about the causes of child deaths. Though studies have been conducted to assess the validity of various types of VAs, the programmatic experience of engaging local communities in collecting and using VA has received little attention in the published literature. Concern Worldwide, an international non-governmental organization (NGO), in collaboration with the Ministry of Health and Sanitation (MOHS), has implemented a VA protocol in five urban slums of Freetown, Sierra Leone. This paper provides VA results and describes lessons learned from the VA process. METHODS: Under-five child deaths were registered by Community Health Workers (CHWs) in five urban slums between 2014 and 2017, and a specially trained local clinician used a VA protocol to interview caretakers. Symptoms were analysed using InterVA-4 computerized algorithm, a probabilistic expert-driven model to determine the most likely cause of death. Themes in care-seeking were extracted from multiple-choice and open-ended questions. VAs were implemented in collaboration with the community and the results were shared with community stakeholders in participatory review meetings. RESULTS: Main challenges included limitations in death notification and capacity to conduct VA for all notified deaths. A total of 215 VA were available for analysis. Among 79 neonatal deaths aged 0-27 days, the most common cause of death was neonatal pneumonia (55%); among 136 children deaths aged 1-4 years, the most common causes were malaria (56%) and pneumonia (41%). Key themes in care-seeking identified included use of traditional medicine (14% of deaths), absence of care-seeking (23% of deaths), and difficultly reaching the health facility (8% of deaths that occurred at home) during fatal illness. CONCLUSIONS: Conducting VAs as a collaborative process with communities is challenging but can provide valuable data that can be used for local-level decision-making. The findings have practical implications for engaging the community and CHWs in reducing the number of these preventable deaths through expanded efforts at prevention, early and appropriate treatment, and reduction of barriers to care-seeking. A functional end-to-end VA system can enhance meaningful routine vital events monitoring by community, national, and international stakeholders.