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.