The CPT1A Arctic variant: perspectives of community members and providers in two Alaska tribal health settings.

Newborn screening in Alaska includes screening for carnitine palmitoyltransferase 1A (CPT1A) deficiency. The CPT1A Arctic variant is a variant highly prevalent among Indigenous peoples in the Arctic. In this study, we sought to elicit Alaska Native (AN) community member and AN-serving healthcare providers' knowledge and perspectives on the CPT1A Arctic variant. Focus groups with community members and healthcare providers were held in two regions of Alaska between October 2018 and January 2019. Thematic analysis was used to identify recurring constructs. Knowledge and understanding about the CPT1A Arctic variant and its health impact varied, and participants were interested in learning more about it. Additional education for healthcare professionals was recommended to improve providers' ability to communicate with family caregivers about the Arctic variant. Engagement with AN community members identified opportunities to improve educational outreach via multiple modalities for providers and caregivers on the Arctic variant, which could help to increase culturally relevant guidance and avoid stigmatization, undue worry, and unnecessary intervention. Education and guidance on the care of infants and children homozygous for the CPT1A Arctic variant could improve care and reduce negative psychosocial effects.

Conceptualizing Indigenous strengths-based health and wellness research using group concept mapping.

BACKGROUND: In recent years public health research has shifted to more strengths or asset-based approaches to health research but there is little understanding of what this concept means to Indigenous researchers. Therefore our purpose was to define an Indigenous strengths-based approach to health and well-being research. METHODS: Using Group Concept Mapping, Indigenous health researchers (N = 27) participated in three-phases. Phase 1: Participants provided 218 unique responses to the focus prompt "Indigenous Strengths-Based Health and Wellness Research…" Redundancies and irrelevant statements were removed using content analysis, resulting in a final set of 94 statements. Phase 2: Participants sorted statements into groupings and named these groupings. Participants rated each statement based on importance using a 4-point scale. Hierarchical cluster analysis was used to create clusters based on how statements were grouped by participants. Phase 3: Two virtual meetings were held to share and invite researchers to collaboratively interpret results. RESULTS: A six-cluster map representing the meaning of Indigenous strengths-based health and wellness research was created. Results of mean rating analysis showed all six clusters were rated on average as moderately important. CONCLUSIONS: The definition of Indigenous strengths-based health research, created through collaboration with leading AI/AN health researchers, centers Indigenous knowledges and cultures while shifting the research narrative from one of illness to one of flourishing and relationality. This framework offers actionable steps to researchers, public health practitioners, funders, and institutions to promote relational, strengths-based research that has the potential to promote Indigenous health and wellness at individual, family, community, and population levels.

The Cultural Adaption of a Sobriety Support App for Alaska Native and American Indian People: Qualitative Feasibility and Acceptability Study.

BACKGROUND: Despite high rates of alcohol abstinence, Alaska Native and American Indian (ANAI) people experience a disproportionate burden of alcohol-related morbidity and mortality. Multiple barriers to treatment exist for this population, including a lack of culturally relevant resources; limited access to or delays in receiving treatment; and privacy concerns. Many ANAI people in the state of Alaska, United States, live in sparsely populated rural areas, where treatment access and privacy concerns regarding peer-support programs may be particularly challenging. In addition, prior research demonstrates that many ANAI people prefer a self-management approach to sobriety, rather than formal treatment. Taken together, these factors suggest a potential role for a culturally adapted smartphone app to support ANAI people interested in changing their behavior regarding alcohol use. OBJECTIVE: This study was the first phase of a feasibility and acceptability study of a culturally tailored version of an off-the-shelf smartphone app to aid ANAI people in managing or reducing their use of alcohol. The aim of this qualitative needs assessment was to gather insights and preferences from ANAI people and health care providers serving ANAI people to guide feature development, content selection, and cultural adaptation before a pilot test of the smartphone app with ANAI people. METHODS: From October 2018 to September 2019, we conducted semistructured interviews with 24 ANAI patients aged ≥21 years and 8 providers in a tribal health care organization in south-central Alaska. RESULTS: Participants generally endorsed the usefulness of a smartphone app for alcohol self-management. They cited anonymity, 24/7 access, peer support, and patient choice as key attributes of an app. The desired cultural adaptations included ANAI- and land-themed design elements, cultural content (eg, stories from elders), and spiritual resources. Participants considered an app especially useful for rural-dwelling ANAI people, as well as those who lack timely access to treatment services or prefer to work toward managing their alcohol use outside the clinical setting. CONCLUSIONS: This needs assessment identified key features, content, and cultural adaptations that are being implemented in the next phase of the study. In future work, we will determine the extent to which these changes can be accommodated in a commercially available app, the feasibility of implementation, and the acceptability of the culturally adapted version of the app among ANAI users.

Global goals and suicide prevention in the Circumpolar North.

The purpose of this selective narrative review is to provide an overview of suicide and suicide prevention in the Circumpolar North and the relevance of global strategies and policies to these themes. We conducted a selective review of the English language literature on Arctic Indigenous mental health, suicide, and suicide prevention. We briefly present the social context, epidemiology, and risk and protective factors for suicide in the Arctic, with a focus on Indigenous peoples. We highlight a recent collaborative, intergovernmental response to elevated suicide rates in this region, the Reducing the Incidence of Suicide in Indigenous Groups - Strengths United through Networks Initiative, which used a consensus methodology to identify key outcomes for evaluating suicide prevention interventions in the circumpolar context. In relation to the Sustainable Development Goals, we examine recent policy developments in Indigenous-led suicide prevention and identify opportunities for strengthening policy, community interventions, and research. Globally, suicide prevention is a public health priority, and reducing the number of suicide deaths is a key target for sustainable development. Although overall and country-specific suicide rates have decreased since 1990, there remains wide variation at the regional and local level. This is particularly evident in the Arctic region known as the Circumpolar North, where Indigenous peoples experience marked disparities in suicide risk and suicide deaths compared to non-Indigenous populations. The factors that influence these variations are complex and often rooted in the social and economic consequences of colonization. The integration of science, community-based and Indigenous knowledge, and policies that address upstream risks for suicide will play an important role in suicide prevention alongside the growing number of Indigenous suicide prevention strategies tailored for specific populations.

The Development of a Measure of Alaska Native Community Resilience Factors through Knowledge Co-production.

BACKGROUND: The Alaska Native Community Resilience Study (ANCRS) is the central research project of the Alaska Native Collaborative Hub for Research on Resilience (ANCHRR), one of three American Indian and Alaska Native (AIAN) suicide prevention hubs funded by the National Institute of Mental Health. OBJECTIVE: This paper describes the development of a structured interview to identify and measure community-level protective factors that may reduce suicide risk among youth in rural Alaska Native communities. METHODS: Multilevel, iterative collaborative processes resulted in: a) expanded and refined constructs of community-level protection, b) clearer and broadly relevant item wording, c) respectful data collection procedures, and d) Alaska Native people from rural Alaska as primary knowledge-gathering interviewers. LESSONS LEARNED: Moving beyond engagement to knowledge co-production in Alaska Native research requires flexibility, shared decision-making and commitment to diverse knowledge systems; this can result in culturally attuned methods, greater tool validity, new ways to understand complex issues and innovations that support community health.

RISING SUN: Prioritized Outcomes for Suicide Prevention in the Arctic.

The Arctic Council, a collaborative forum among governments and Arctic communities, has highlighted the problem of suicide and potential solutions. The mental health initiative during the United States chairmanship, Reducing the Incidence of Suicide in Indigenous Groups: Strengths United Through Networks (RISING SUN), used a Delphi methodology complemented by face-to-face stakeholder discussions to identify outcomes to evaluate suicide prevention interventions. RISING SUN underscored that multilevel suicide prevention initiatives require mobilizing resources and enacting policies that promote the capacity for wellness, for example, by reducing adverse childhood experiences, increasing social equity, and mitigating the effects of colonization and poverty.

Community Dissemination in a Tribal Health Setting: A Pharmacogenetics Case Study.

Alaska Native and American Indian (AN/AI) people experience a disproportionate burden of health disparities in the United States. Including AN/AI people in pharmacogenetic research offers an avenue to address these health disparities, however the dissemination of pharmacogenetic research results in the community context can be a challenging task. In this paper, we describe a case-study that explores the preferences of AN/AI community members regarding pharmacogenetic research results dissemination. Results were presented as a PowerPoint presentation at the 2016 Alaska Native Health Research Forum (Forum). An audience response system and discussion groups were used to gather feedback from participants. Descriptive statistics were used to assess attendee understanding of the presentation content. Thematic analysis was used to analyze discussion group data. Forum attendees needed time to work through the concept of pharmacogenetics and looked for ways pharmacogenetics could apply to their daily life. Attendees found pharmacogenetics interesting, but wanted a simple description of pharmacogenetics. Community members were optimistic about the potential benefit pharmacogenetic medicine could have in the delivery of health care and expressed excitement this research was taking place. Researchers were urged to communicate throughout the study, not just end research results, to the community. Furthermore, attendees insisted their providers stay informed of research results that may have an impact on health care delivery. Conversational forms of dissemination are recommended when disseminating pharmacogenetic research results at the community level.

Future Directions in Disseminating Research Findings to Urban Alaska Native People.

Southcentral Foundation (SCF), a tribal health organization based in Anchorage, Alaska, operates and plans health care services in response to the priorities and tribal values of Alaska Native and American Indian (AN/AI) people, including traditional concepts of wellness, reciprocity, and working in relationship. In an effort to better incorporate AN/AI priorities and values in research dissemination, the SCF Research Department hosted the Alaska Native Health Research Forum (Forum) in May 2016. In this paper, we describe the communication strategies used by the SCF Public Relations Department, which were shared with Forum attendees, describe attendee recommendations for researchers to consider and implement, and then discuss future directions for dissemination. Lessons learned through the Forum were 1) customer-owners are interested in learning more about research, 2) dissemination should be done throughout all stages of projects using a variety of media channels, and 3) SCF Research Department dissemination should continue to shape health care.