Hearing Norton Sound: community involvement in the design of a mixed methods community randomized trial in 15 Alaska Native communities

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. Methods Community engagement and participation in research design occurred through focus groups and through the integration of stakeholders into the study team. Representation was cross-sectoral, involving individuals from multiple levels of the school and health system, as well as community members from each of the 15 communities. Feedback obtained between April 2017 and August 2017 informed the final design of the randomized trial, which began enrollment of children in October 2017 and concluded in March 2019. Results Stakeholder involvement and community participation shaped the design of specific trial elements (research question; comparators; outcomes and measures; telemedicine protocols; and recruitment and retention). Community involvement was strengthened by the use of multiple modalities of involvement and by the positionality of lead stakeholders on the study team. Conclusions This study highlights the effectiveness of multifaceted stakeholder involvement and participation in the design of health research conducted within Alaska Native communities. It offers an example of involvement and reporting that could be mirrored in future research in order to protect and further the interests of the participating community. Trial registration ClinicalTrials.gov, NCT03309553, First registered 10/9/2017

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Beliefs about causal factors for suicide in rural Alaska Native communities and recommendations for prevention

Transcultural Psychiatry ◽

10.1177/1363461520963869 ◽

2020 ◽

pp. 136346152096386

Author(s):

Monica C. Skewes ◽

Julie A. Gameon ◽

Fiona Grubin ◽

Christopher R. DeCou ◽

Lindsey Whitcomb

Keyword(s):

Mental Health ◽

Alaska Native ◽

Indigenous Communities ◽

Traumatic Experiences ◽

Prevention Strategies ◽

Community Members ◽

Causal Factors ◽

Rural Villages ◽

Native Communities ◽

Rural Alaska

Rural Indigenous communities in Alaska suffer staggeringly high rates of suicide. In close-knit Alaska Native villages, each suicide leaves a trail of affected family and community members in its wake. This research aimed to understand community perceptions of what causes suicide in rural Alaska Native villages and generate recommendations for prevention strategies. In-depth interviews were conducted with 25 Alaska Native university students who moved from rural villages to an urban area to attend college. All had been profoundly affected by others’ suicides and shared their beliefs about causal factors and recommendations for prevention efforts. Perceived causes included resistance to seeking help or discussing personal problems, loss of culture, traumatic experiences, geographical and social isolation, lack of opportunity, substance abuse, and exposure to others’ suicides. Participants believed that suicide is preventable and recommended multi-level approaches to address suicide disparities. They provided recommendations for potentially effective and culturally appropriate prevention strategies, including increasing cultural and social connections, educating community members about mental health, and increasing accessibility of counseling services/reducing barriers to mental health services utilization.

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Educational Alternatives for Rural Alaska

The Aboriginal Child at School ◽

10.1017/s031058220001381x ◽

1985 ◽

Vol 13 (3) ◽

pp. 34-41 ◽

Cited By ~ 1

Author(s):

R. Bernhardt

Keyword(s):

Alaska Native ◽

Educational Preparation ◽

Native Communities ◽

Full Control ◽

The Social ◽

Educational Alternatives ◽

Rural Alaska ◽

Institutional Landscape ◽

Economic Developments ◽

The University

In the recent years, major economic developments have occurred in rural Alaska that have permanently changed the social, political and institutional landscape. The 150 Eskimo, Indian and Aleut communities have borne the brunt of these changes. Few have had available to them the indigenous human resources, the technical skills and educational preparation necessary to assume full control over these forces. In 1980 the University of Alaska, Fairbanks, in cooperation with several native organisations, successfully approached the Bernard van Leer Foundation with a proposal to assist Alaska Native communities in developing their own capacity to shape their future. This is the story of how the ‘Van Leer Project’ has attempted to respond to those developments.

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Preliminary Evaluation of a School-Based Youth Leadership and Prevention Program in Rural Alaska Native Communities

School Mental Health ◽

10.1007/s12310-016-9203-2 ◽

2016 ◽

Vol 9 (2) ◽

pp. 172-183 ◽

Cited By ~ 4

Author(s):

Lisa Wexler ◽

Kalpana Poudel-Tandukar ◽

Suzanne Rataj ◽

Lucas Trout ◽

Krishna C. Poudel ◽

...

Keyword(s):

Alaska Native ◽

Prevention Program ◽

Youth Leadership ◽

Preliminary Evaluation ◽

Native Communities ◽

School Based ◽

Rural Alaska

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A CBPR Approach to Finding Community Strengths and Challenges to Prevent Youth Suicide and Substance Abuse

Journal of Transcultural Nursing ◽

10.1177/1043659616679234 ◽

2016 ◽

Vol 29 (1) ◽

pp. 64-73 ◽

Cited By ~ 5

Author(s):

Carrie E. Holliday ◽

Melodi Wynne ◽

Janet Katz ◽

Chanel Ford ◽

Celestina Barbosa-Leiker

Keyword(s):

Substance Abuse ◽

Alaska Native ◽

Community Based Participatory Research ◽

Pilot Project ◽

Reciprocal Relationship ◽

Tribal Community ◽

Youth Suicide ◽

Community Members ◽

Research Partnerships ◽

Native Communities

Purpose: To improve health and reduce health disparities, research partnerships with American Indian and Alaska Native communities should build on existing traditions and strengths. The overall goal of this pilot project was to clarify the needs of tribal community members and determine strengths and resources available to the community. Design: Community-based participatory research was the approach used to obtain community input. Data collection methods included, Photovoice ( n = 16), digital storytelling ( n = 4), and community capacity surveys ( n = 128). Results: Quantitative and qualitative findings supported the need to (1) address youth suicide and substance abuse on the reservation and (2) use preexisting resources available in the community. The results led to the development of a strengths-based intervention incorporating the Gathering of Native American’s curriculum. Conclusion: Integral to the development, implementation, and sustainability of the intervention was the truly reciprocal relationship developed between community and university partners.

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The Induction Seminar: Nurturing Culturally Sustaining Teaching and Learning in Rural Alaska Native Communities

Advances in Research on Teaching - Culturally Sustaining and Revitalizing Pedagogies ◽

10.1108/s1479-368720150000029014 ◽

2017 ◽

pp. 169-187 ◽

Cited By ~ 1

Author(s):

Karen Roth

Keyword(s):

Alaska Native ◽

Teaching And Learning ◽

Native Communities ◽

Rural Alaska

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Priorities for future research: the community adding value to linked data research

International Journal for Population Data Science ◽

10.23889/ijpds.v3i4.914 ◽

2018 ◽

Vol 3 (4) ◽

Author(s):

Anne McKenzie ◽

Maria Holland ◽

Hayley Harrison ◽

Melissa O'Donnell ◽

David B Preen

Keyword(s):

Community Involvement ◽

Linked Data ◽

Positive Impact ◽

Aboriginal Health ◽

Research Network ◽

Federal State ◽

Future Research ◽

Community Members ◽

Research Areas ◽

Children In Care

IntroductionWhilst there is limited published information on the benefits of engaging the public in linked data research, our presentation will add to international knowledge about the benefits of involving the community in a priority setting exercise for future research areas in a new linkage project. Objectives and ApproachWe’ll co-present with a consumer about our experiences of the community having a role in linked data research over the past 20-years. Community members have provided input into: research projects; feedback to government agencies; submissions to federal/state governments; issues about access to data; and priorities for research. In 2017 community members prioritised broad research areas for a new project involving cross-agency linkage, investigating pathways to wellbeing and social-outcomes across the life-course to improve outcomes and identify cost-efficiencies. Community members completed a survey to rank the broad themes and then attended a workshop to discuss the themes and identify gaps or new ideas. ResultsFollowing the workshop all suggestions made on the day were themed into broad areas and then circulated to the attendees to rank in order of importance. These community activities identified the top ten priorities, as shown below, as being the most important areas for future research: Aboriginal Health and Wellbeing Children in Care Disability Education Families Health Homelessness Refugees Alcohol and other drugs Fetal Alcohol Spectrum Disorders The community input has provided valuable insights about ‘what is important to them’ and informed the development of the proposal for this new cross-agency project. It also had a positive impact on the community member’s perception of, and support for, this potential new research. Conclusion/ImplicationsThe 20 years’ experience gained by the WA Consumer and Community Health Research Network in Western Australia has led to the development of a range of methods for involving the community in linked data research. These methods enable us to clearly demonstrate benefits and value of consumer and community involvement.

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Recruitment best practices of a cardiovascular risk reduction randomised control trial in rural Alaska Native communities

International Journal of Circumpolar Health ◽

10.1080/22423982.2020.1806639 ◽

2020 ◽

Vol 79 (1) ◽

pp. 1806639

Author(s):

Mariah Knox ◽

Jordan Skan ◽

Neal L. Benowitz ◽

Matthew Schnellbaecher ◽

Judith J. Prochaska

Keyword(s):

Cardiovascular Risk ◽

Best Practices ◽

Risk Reduction ◽

Alaska Native ◽

Randomised Control Trial ◽

Cardiovascular Risk Reduction ◽

Native Communities ◽

Rural Alaska

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Household reporting of childhood respiratory health and air pollution in rural Alaska Native communities

International Journal of Circumpolar Health ◽

10.3402/ijch.v73.24324 ◽

2014 ◽

Vol 73 (1) ◽

pp. 24324 ◽

Cited By ~ 11

Author(s):

Desirae N. Ware ◽

Johnnye Lewis ◽

Scarlett Hopkins ◽

Bert Boyer ◽

Luke Montrose ◽

...

Keyword(s):

Air Pollution ◽

Alaska Native ◽

Respiratory Health ◽

Native Communities ◽

Rural Alaska

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Determining sex of adult Pacific walruses from mandible measurements

Journal of Mammalogy ◽

10.1093/jmammal/gyaa051 ◽

2020 ◽

Vol 101 (4) ◽

pp. 941-950

Author(s):

Nathan Taylor ◽

Casey T Clark ◽

Nicole Misarti ◽

Lara Horstmann

Keyword(s):

Alaska Native ◽

Function Analysis ◽

Vital Role ◽

Future Research ◽

Pacific Walrus ◽

Linear Discriminant ◽

Native Communities ◽

Odobenus Rosmarus Divergens ◽

Odobenus Rosmarus ◽

Mandible Length

Abstract Pacific walruses (Odobenus rosmarus divergens) play a vital role in Arctic marine ecosystems and the subsistence lifestyle of Alaska Native communities. Museum collections contain numerous archaeological and historic walrus specimens that have proven useful in a variety of studies; however, for many cases, the sex of these specimens is unknown. Sexes of adult (> 5 years determined by tooth aging) Atlantic walruses (Odobenus rosmarus rosmarus) have been accurately determined in previous studies using mandible measurements. We tested the validity of this approach for Pacific walruses, and used full fusion of the mandibular symphysis to define adults. Using high precision digital calipers (± 0.01 mm), four measurements were taken either on the left or right side of 91 walrus mandibles: 80 modern mandibles (70 known-sex specimens; 10 unknown-sex specimens) and 11 archaeological mandibles of unknown sex. We used linear discriminant function analysis (LDFA) to determine what measurements best distinguished Pacific walrus males from females. Minimum mandible thickness had the most predictive power, whereas mandible length, height, and depth, were less predictive. Posterior probabilities indicated that LDFA classified the known-sex Pacific walruses with 100% accuracy, and unknown sex with ≥ 90% probability. The ability to define the sex of unknown individuals accurately could greatly increase the sample size of future projects dealing with skeletal remains, and will improve future research efforts.

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