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

Daniel Reidpath - ORCID: 0000-0002-8796-0420 https://orcid.org/0000-0002-8796-0420Background 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.https://doi.org/10.3402/gha.v8.282198pubpub

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. © 2014 Pascale Allotey et al

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

Daniel Reidpath - ORCID: 0000-0002-8796-0420 https://orcid.org/0000-0002-8796-0420Background 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.https://doi.org/10.3402/gha.v7.231767pubpub

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

Community-based blood pressure measurement by non-health workers using electronic devices: a validation study

Introduction: Population monitoring and screening of blood pressure is an important part of any population health strategy. Qualified health workers are expensive and often unavailable for screening. Non-health workers with electronic blood pressure monitors are increasingly used in community-based research. This approach is unvalidated. In a poor, urban community we compared blood pressure measurements taken by non-health workers using electronic devices against qualified health workers using mercury sphygmomanometers. Method: Fifty-six adult volunteers participated in the research. Data were collected by five qualified health workers, and six non-health workers. Participants were randomly allocated to have their blood pressure measured on four consecutive occasions by alternating a qualified health worker with a non-health worker. Descriptive statistics and graphs, and mixed effects linear models to account for the repeated measurement were used in the analysis. Results: Blood pressure readings by non-health workers were more reliable than those taken by qualified health workers. There was no significant difference between the readings taken by qualified health workers and those taken by non-health workers for systolic blood pressure. Non-health workers were, on average, 5–7 mmHg lower in their measures of blood pressure than the qualified health workers (95%HPD: −2.9 to −10.0) for diastolic blood pressure. Conclusion: The results provide empirical evidence that supports the practice of non-health workers using electronic devices for BP measurement in community-based research and screening. Non-health workers recorded blood pressures that differed from qualified health workers by no more than 10 mmHg. The approach is promising, but more research is needed to establish the generalisability of the results