Disseminating research in rural Yup’ik communities: challenges and ethical considerations in moving from discovery to intervention development

• Published in: International Journal of Circumpolar Health
• Main Authors: Inna Rivkin, Joseph Trimble, Ellen D. S. Lopez, Samuel Johnson, Eliza Orr, James Allen
• Format: Article in Journal/Newspaper
• Language: English
• Published: Taylor & Francis Group 2013
• Subjects: Alaska Native; stress; coping; reporting research results; community-based participatory research (CBPR); research ethics; Arctic medicine. Tropical medicine; RC955-962; Arctic; Circumpolar Health; International Journal of Circumpolar Health; Alaska
• Online Access: https://doi.org/10.3402/ijch.v72i0.20958; https://doaj.org/article/5993c06476d841d0b0544edd0d01ef29

Background. The native people of Alaska have experienced historical trauma and rapid changes in culture and lifestyle patterns. As a consequence, these populations shoulder a disproportionately high burden of psychological stress. The Yup’ik Experiences of Stress and Coping project originated from rural Yup’ik communities’ concerns about stress and its effects on health. It aimed to understand the stressful experiences that affect Yup’ik communities, to identify coping strategies used to deal with these stressors and to inform culturally responsive interventions. Objectives. Here, we examine the process of moving from research (gaining understanding) to disseminating project findings to translation into intervention priorities. We highlight the importance of community participation and discuss challenges encountered, strategies to address these challenges and ethical considerations for responsible intervention research with indigenous communities that reflect their unique historical and current socio-cultural realities. Design. Community-wide presentations and discussions of research findings on stress and coping were followed by smaller Community Planning Group meetings. During these meetings, community members contextualized project findings and discussed implications for interventions. This process placed priority on community expertise in interpreting findings and translating results and community priorities into grant applications focused on intervention development and evaluation. Results. Challenges included translation between English and Yup’ik, funding limitations and uncertainties, and the long timelines involved in moving from formative research to intervention in the face of urgent and evolving community needs. The lack of congruence between institutional and community worldviews in the intervention research enterprise highlights the need for “principled cultural sensitivity”. Conclusions. Cultural sensitivity requires ...