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FINAL REPORT: NATIONAL CHILDREN'S STUDY FOCUS GROUPS - FOLLOW-UP
Citation:
LOBDELL, D. T. AND L. DIMITROPOULOS. FINAL REPORT: NATIONAL CHILDREN'S STUDY FOCUS GROUPS - FOLLOW-UP. U.S. Environmental Protection Agency, Washington, DC, EPA/600/R-05/020, 2005.
Impact/Purpose:
To add to our knowledge of the issues affecting recruitment and retention of pregnant women into the National Children's Study by conducting 14 focus group sessions.
Description:
The purpose of this work assignment was to add to our knowledge of the issues that will affect
recruitment and retention of pregnant women into the National Children's Study by conducting 14 focus
groups comprised of pregnant women, couples, and parents of young children who represent a range of
racial and ethnic minority groups. Eight of the groups conducted were comprised of women recruited
from eight different racial and ethnic groups. Four of the groups were devoted to issues affecting
pregnant teens, and couples trying to conceive, and two groups focused only on the collection of biologic
specimens. The information collected from this set of focus groups expands on the information gathered
from an earlier series of 18 focus groups conducted with five major stakeholders in the NCS' pregnant
women, parents of young children, parents of children with disabilities, community representatives and
health care providers.
Based on information learned in the early groups and on an extensive literature on mistrust of
researchers among racial and ethnic minorities, we wanted to explore further the ways that beliefs about
mistrust of research, particularly medical research, and institutional racism may impact recruitment and
retention of racial and ethnic minorities into the NCS. Another area of concern involves the special issues
and circumstances that are specific to pregnant teens. It will be important to know what this group thinks
about committing to participate in the NCS. Since the NCS plans to enroll women into the study as early
in pregnancy as possible, a third important group included couples who are trying to conceive. Would
this group have unique concerns about enrolling in the NCS? Finally, we were interested in learning
more about how women think and feel about the collection of biologic specimens both during pregnancy,
delivery and from the child after birth. This topic was covered in the previous 18 focus groups but only
as one topic among many. In this set of focus groups, the collection of specimens was the main topic of
discussion that allowed us to explore the topic in depth.
This report describes the findings from fourteen focus groups that were comprised as follows:
" Pregnant teens and teen mothers (2 groups)
" Couples currently attempting to become pregnant (2 groups)
" Pregnant women and parents discussing biologic specimen (2 groups)
" Pregnant women and mothers of varied racial and ethnic backgrounds (8 groups)
African-American, (non-Hispanic)
Non-African-American Black (non-Hispanic)
Mexican-American
Hispanic (non-Mexican-American)
Native American Pacific Northwest
Native American Southwest
Chinese-Thai-Vietnamese Asian
Filipino-South Asian Indian-Indonesian
This report also provides an overall summary of the major themes that emerged from both the
earlier set of 18 focus groups and the 14 focus groups conducted in this follow-up.