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USE OF DISCUSSION GROUPS TO INVESTIGATE RECRUITMENT AND RETENTION ISSUES FOR THE NATIONAL CHILDREN'S STUDY
Citation:
Mendola, P, D. T. Lobdell, AND S. Gutter. USE OF DISCUSSION GROUPS TO INVESTIGATE RECRUITMENT AND RETENTION ISSUES FOR THE NATIONAL CHILDREN'S STUDY. Presented at International Society for Environmental Epidemiology, Vancouver, British Columbia, Canada, August 11-15, 2002.
Description:
Use of Discussion Groups to Investigate Recruitment and Retention Issues for a Longitudinal Study of Children's Environmental Health
DT Lobdell*, S Gutter+, P Mendola* (*US EPA, NHEERL; +UNC Chapel Hill)
Much of what is known about successful recruitment and retention of participants in longitudinal studies is anecdotal, and the majority of the published literature addressing recruitment and retention focuses on controlled clinical trials rather than on observational studies. Researchers are often confronted with low recruitment rates, which may have serious implications for the statistical power, length, cost, internal validity and generalizability of the study. Differential retention can lead to bias in longitudinal studies if more high risk participants are lost to followup or if those who are most ill are also more likely to stay in the study. Better understanding of the most effective recruitment techniques and retention strategies for community-based environmental health research is needed, especially for studies involving children. This method development study gathers opinions from community stakeholder groups regarding recruitment and retention strategies. Sixteen discussion groups of 7-9 individuals each will be assembled across the United States. The four different types of stakeholder groups to be included are: (1) pregnant women; (2) parents of non-disabled children under 12 years; (3) parents of developmentally disabled children under 12 years; and (4) health care providers who work with children and/or pregnant women. Recruitment discussion questions address the following issues: How would they want to hear about the research study? What would encourage them to ask for more information? Should recruitment materials emphasize public health benefits or individual incentives? What would generate excitement that translates into participation in the study? Retention issues focus on: Is there a preference for monetary or non-monetary incentives? What kinds or amounts of incentives could be considered coercive? How should participants be kept informed over time? How often should subjects be contacted? What would keep participants interested over time? What are the best ways to contact individuals over time? What types of information requests or biologic specimen collection would be considered burdensome and discourage continued participation? Qualitative content from the discussions will be assembled and analyzed among the four types of groups, by geographic region, and by the demographic characteristics of the participants. Results from the 16 discussion groups will be used in planning a large longitudinal cohort study to evaluate the influence of environment on children's health and development in the United States.
This is an abstract of a proposed presentation and does not necessarily reflect EPA policy.