Perspectives on Communication and Participation in Research Notification Focus Groups

Abstract

Researchers are slowly acknowledging an ethical obligation to inform research participants about study findings. Research notification may help participants become aware of and manage potential health risks. Scholars and practitioners have acknowledged the need for better understanding of this process. This study investigates transcripts of focus groups conducted to gauge audience reactions to notification materials that communicate scientific research findings about occupational exposures. Focus groups are a useful way to tailor notification materials to audiences, but we caution that transmission models of communication used in risk research may obscure the full value of focus groups. The emphasis on translating scientific communication into “lay” language may overlook how scientists and lay audiences can work together to bridge differences in language, experiences, goals, and orientations toward health. This study demonstrates limitations in scientific risk communication that minimize participation in communicating science. The conclusion provides instructive insights for strengthening the process of communicating science.

Notes

¹ Findings from these investigations were published in seven scientific journal articles (Prince et al., 2006; Ruder et al., 2006; Schubauer-Berigan et al., 2007a, 2007b; Silver et al., 2009; Steenland et al., 2006; Yiin et al., 2009). Of the four PCB studies, one focused on breast cancer (Silver et al., 2009), one on neurodegenerative-disease mortality (Steenland et al., 2006), and the rest on all-cause mortality (Prince et al., 2006; Ruder et al., 2006; Steenland et al., 2006). Of the three radiation studies, one focused on mortality from multiple myeloma (Yiin et al., 2009), and the other two on mortality from leukemia (Schubauer-Berigan et al., 2007a, 2007b). For the breast cancer investigation, NIOSH researchers asked former workers to complete a questionnaire between 1998 and 2000. The mortality investigations were conducted using existing records only. All but the breast cancer study found that occupational exposures to PCBs and radiation were associated with adverse health outcomes.

² In Massachusetts and Indiana, randomly selected former workers of the manufacturing plants that used PCBs (n = 200 in Massachusetts, n = 160 in Indiana) received an invitation letter for a focus group. Follow-up phone calls were made until 32 former workers agreed to participate in four focus groups. Of those, 29 actually participated (Table 1). In Washington and Tennessee, where radiation study focus groups were conducted, participants were recruited through the local United Steel Workers union, the Center for Construction Research and Training, and the Building Trades National Medical Screening Program. Twenty-six nuclear facility workers participated in three focus groups (Table 1).