Hearing Norton Sound: community involvement in the design of a mixed methods community randomized trial in 15 Alaska Nat
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(2020) 6:67
RESEARCH ARTICLE
Open Access
Hearing Norton Sound: community involvement in the design of a mixed methods community randomized trial in 15 Alaska Native communities Samantha Kleindienst Robler1*† , S. Meade Inglis1,2,3†, Joseph J. Gallo4, Heather E. Parnell2, Paul Ivanoff5, Stephanie Ryan6, Cole D. Jenson1, Alexandra Ross2,7, Alain Labrique8, Nae-Yuh Wang9,10 and Susan D. Emmett2,3,7
Plain English summary Community involvement is important in good research practice. We led a community-based study to improve early detection and treatment of childhood hearing loss in rural Alaska. This study evaluated a cell phone-based hearing screening process and compared a new telemedicine specialty referral pathway to the standard primary care referral pathway. The study included community involvement, engagement, and participation from the very beginning to inform how to best design the trial. We obtained insight and feedback from community members through involvement of a core stakeholder team and through community engagement and participation in focus groups and community events. Feedback received through community involvement and participation influenced the design of the trial at key decision points. Community member guidance shaped the research question, the outcomes to be measured, and the procedures for completing the project, such as participant recruitment. This study offers an example of community involvement, engagement and participation that could be mirrored in future research to maintain the interests of participating communities.
Abstract Background Effective systems for early identification and treatment of childhood hearing loss are essential in rural Alaska, where data indicate a high prevalence of childhood ear infections and hearing loss. However, loss to follow-up from school hearing screening programs is pervasive. The Hearing Norton Sound study was a mixed methods community randomized controlled trial that was developed to address this gap. The study engaged community members and participants in the design of the trial, including involvement of stakeholders as collaborators. (Continued on next page)
* Correspondence: [email protected] † Samantha Kleindienst Robler and Meade Inglis are joint first authorship. 1 Department of Audiology, Norton Sound Health Corporation, Nome, AK, USA Full list of author information is available at the end of the article © The Author(s). 2020 Open Access This article is licensed under a Creative Commons Attribution 4.0 International License, which permits use, sharing, adaptation, distribution and reproduction in any medium or format, as long as you give appropriate credit to the original author(s) and the source, provide a link to the Creative Commons licence, and indicate if changes were made. The images or other third party material in this article are included in the article's Creative Commons licence, unless indicated otherwise in a credit line to the material. If material is not included in the article's Creative Commons licence and your intende
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