RESUMO
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.
RESUMO
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.