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Perspectives on Biological Monitoring in Environmental Health Research: A Focus Group Study in a Native American Community.

ABSTRACT: Background: Reliance on natural resources brings Native American communities into frequent contact with environmental media, which, if contaminated, represents an exposure route for environmental pollutants. Native American communities vary in their perspectives on research and relatively little is known about the range of perspectives regarding the use of biological samples for environmental exposure assessment. Methods: Thirty-one members of Zuni Pueblo (median age = 40.0 years, range = 26?59 years) participated a series of four focus groups. Qualitative themes emerging from the focus group discussion transcripts were identified by content analysis. Results: Emergent themes included adequate informed consent, traditional beliefs, and personal choice. Conclusions: The discussions reinforced the central role of traditional values in the decision to participate in research involving biological samples for environmental exposure assessment. Decision-making required a balance between the perceived value of the proposed project and its purpose, with cultural perspectives surrounding the biological sample requested. We examine the potential for study bias and include recommendations to aid in the collaborative identification and control of unintended risks posed by the use of biological samples in environmental health studies in native communities.

SUBMITTER: Gonzales M

PROVIDER: S-EPMC6025825 | biostudies-literature | 2018 May

REPOSITORIES: biostudies-literature

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Perspectives on Biological Monitoring in Environmental Health Research: A Focus Group Study in a Native American Community.

Gonzales Melissa M King Elanda E Bobelu Jeanette J Ghahate Donica M DM Madrid Teresa T Lesansee Sheri S Shah Vallabh V

International journal of environmental research and public health 20180531 6

<i>Background:</i> Reliance on natural resources brings Native American communities into frequent contact with environmental media, which, if contaminated, represents an exposure route for environmental pollutants. Native American communities vary in their perspectives on research and relatively little is known about the range of perspectives regarding the use of biological samples for environmental exposure assessment. <i>Methods:</i> Thirty-one members of Zuni Pueblo (median age = 40.0 years, ...[more]

PMID: 29857506

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Project description:BACKGROUND:Most prospective studies involving individuals receiving maintenance dialysis have been small, and many have had poor clinical translatability. Research relevance can be enhanced through stakeholder engagement. However, little is known about dialysis clinic stakeholders' perceptions of research participation and facilitation. The objective of this study was to characterize the perspectives of dialysis clinic stakeholders (patients, clinic personnel, and medical providers) on: (1) research participation by patients and (2) research facilitation by clinic personnel and medical providers. We also sought to elucidate stakeholder preferences for research communication. STUDY DESIGN:Qualitative study. SETTING & PARTICIPANTS:7 focus groups (59 participants: 8 clinic managers, 14 nurses/patient care technicians, 8 social workers/dietitians, 11 nephrologists/advanced practice providers, and 18 patients/care partners) from 7 North Carolina dialysis clinics. METHODOLOGY:Clinics and participants were purposively sampled. Focus groups were recorded and transcribed. ANALYTICAL APPROACH:Thematic analysis. RESULTS:We identified 11 themes that captured barriers to and facilitators of research participation by patients and research facilitation by clinic personnel and medical providers. We collapsed these themes into 4 categories to create an organizational framework for considering stakeholder (narrow research understanding, competing personal priorities, and low patient literacy and education levels), relationship (trust, buy-in, and altruistic motivations), research design (convenience, follow-up, and patient incentives), and dialysis clinic (professional demands, teamwork, and communication) aspects that may affect stakeholder interest in participating in or facilitating research. These themes appear to shape the degree of research readiness of a dialysis clinic environment. Participants preferred short research communications delivered in multiple formats. LIMITATIONS:Potential selection bias and inclusion of English-speaking participants only. CONCLUSIONS:Our findings revealed patient interest in participating in research and clinical personnel and medical provider interest in facilitating research. Overall, our results suggest that dialysis clinic research readiness may be enhanced through increased stakeholder research knowledge and alignment of clinical and research activities.

Dataset Information

Perspectives on Biological Monitoring in Environmental Health Research: A Focus Group Study in a Native American Community.

Publications

Perspectives on Biological Monitoring in Environmental Health Research: A Focus Group Study in a Native American Community.

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