Let's talk about death: data collection for verbal autopsies in a demographic and health surveillance site in Malaysia.

BACKGROUND: Verbal autopsies have gained considerable ground as an acceptable alternative to medically determined cause of death. Unlike with clinical or more administrative settings for data collection, verbal autopsies require significant involvement of families and communities, which introduces important social and cultural considerations. However, there is very little clear guidance about the methodological issues in data collection. The objectives of this case study were: to explore the range of bereavement rituals within the multi-ethnic, multi-faith population of the district; to investigate the preparedness of communities to talk about death; to describe the verbal autopsy process; to assess the effects of collecting verbal autopsy data on data collectors; and to determine the most accurate sources of information about deaths in the community. METHODS: A case study approach was used, using focus group discussions, indepth interviews and field notes. Thematic analyses were undertaken using NVivo. RESULTS: Consideration of cultural bereavement practices is importance to acceptance and response rates to verbal autopsies. They are also important to the timing of verbal autopsy interviews. Well trained data collectors, regardless of health qualifications are able to collect good quality data, but debriefing is important to their health and well being. This article contributes to guidance on the data collection procedures for verbal autopsies within community settings.

Cohorts and community: a case study of community engagement in the establishment of a health and demographic surveillance site in Malaysia.

BACKGROUND: Community engagement is an increasingly important requirement of public health research and plays an important role in the informed consent and recruitment process. However, there is very little guidance about how it should be done, the indicators for assessing effectiveness of the community engagement process and the impact it has on recruitment, retention, and ultimately on the quality of the data collected as part of longitudinal cohort studies. METHODS: An instrumental case study approach, with data from field notes, policy documents, unstructured interviews, and focus group discussions with key community stakeholders and informants, was used to explore systematically the implementation and outcomes of the community engagement strategy for recruitment of an entire community into a demographic and health surveillance site in Malaysia. RESULTS: For a dynamic cohort, community engagement needs to be an ongoing process. The community engagement process has likely helped to facilitate the current response rate of 85% in the research communities. The case study highlights the importance of systematic documentation of the community engagement process to ensure an understanding of the effects of the research on recruitment and the community. CONCLUSIONS: A critical lesson from the case study data is the importance of relationships in the recruitment process for large population-based studies, and the need for ongoing documentation and analysis of the impact of cumulative interactions between research and community engagement.