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.

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.

Follow-up Study Methods for a Longitudinal Cohort of Alaska Native and American Indian People Living within Urban South Central Alaska: The EARTH Study.

Longitudinal data are needed to investigate chronic disease causation and improve prevention efforts for Alaska Native and American Indian (ANAI) people. This paper describes the methods used to conduct follow-up data collection of a longitudinal cohort that enrolled ANAI adults between 2004 and 2006 in south central Alaska. The follow-up study re-examined ANAI participants in a large, urban centre in south central Alaska between 2015 and 2017. Computerized surveys were used to collect self-reported health, lifestyle, physical activity, and diet data. Clinical measurements included blood pressure, fasting blood glucose and lipid panel, urine albumin/creatinine, height, weight, and waist and hip circumference. Participants were provided individual results at the conclusion of their visit. A total of 1320 south central Alaska study participants completed the baseline visit. Study staff attempted to contact all living cohort members for inclusion in the follow-up study. More than 11,000 attempted contacts were made. Of the 637 available for participation, 388 completed the follow-up visit. The proportion of women increased from baseline to follow-up examinations (67 vs. 72%, p < 0.01). Self-reported health status of being married or living as married (46% vs. 39%, p < 0.01), and those reporting being employed or self-employed (55% vs. 47%, p < 0.01) were higher at follow-up when compared to baseline. Almost all participants at follow-up (97%) agreed to long-term storage of biological specimens for future study. Despite demographic differences between the follow-up and baseline cohorts, longitudinal data collected will provide novel insight on chronic disease development and prevention for ANAI people as well as other populations.

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.