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Background: Alzheimer's disease and related dementias (ADRD) disproportionately impact Latinx and other communities of color in the United States. The challenges for patients with ADRD and their informal caretakers can be attributed, in part, to the gaps that exist within health care services and systems. Objective: To understand the perspectives of barriers, beliefs, knowledge, and needs for the Latinx informal caregivers that take care of relatives with ADRD in the Upstate of South Carolina, region of Appalachia. Methods: This study was approved by the GHS-Prisma Health and Clemson University IRB, Study #Pro00086707. In-depth phone interviews were conducted with a sample of Latinx informal caregivers. A descriptive and interpretive phenomenological approach was used for analysis. Participants were recruited through community partnerships with local organizations. Results: Salient themes identified in this study included the relevance of caregiver's degree of awareness about the disease and a perspective of Alzheimer's disease as a progressive and degenerative disease. Critical moments identified encompassed challenges related to patient engagement with the outside world, their attitudes, and behaviors, as well as caregiver-related challenges with access to culturally and linguistically relevant resources needed to provide proper care. Caregivers identified several culturally relevant coping strategies used and motivators in providing care for their relatives with ADRD. Conclusions: Linguistically and culturally sensitive programs and resources that account for knowledge, assets, and needs of Latinx informal caregivers of ADRD patients are needed to improve the quality of care and decrease disparities in health outcomes for Latinx older adults.
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OBJECTIVE: The purpose of this interdisciplinary study was to determine Dominican adolescents' preferences for the content, functionality (i.e. food's glycemic index list, and amount of insulin based on foods' carbohydrate count), and design of a culturally and linguistically relevant mobile application (app) for type 1 diabetes mellitus (T1DM) self-management. The app would facilitate T1DM self-management education and support by addressing providers' challenges in monitoring patients' disease progression and promoting patient adherence to recommended lifestyle changes. Findings inform an app development process that considers the linguistic and cultural values, norms, and structures of people with T1DM and their providers in the Dominican Republic. METHODS: Phone interviews were conducted with 23 adolescents (14 to 18 years of age), using a semistructured questionnaire. The research team conducted the data analysis using NVivo through a deductive and inductive approach. RESULTS: The findings suggest that, regardless of the context, adolescents with T1DM desire similar features and functionalities in a self-management app. Overall, participants preferred an app with a graphic format that has accessible information, a straightforward design, and instructional videos. Participants also desired that an app provide information and reminders about proper eating and insulin administration timing and be a vehicle to access a social network to foster mutual support and encouragement. CONCLUSIONS: Our study highlights adolescents' perspectives on components for inclusion in an app for T1DM self-management. Participants' recommendations for the app's potential usability, contents, and design features will be used to guide the development of a new app to promote engagement and foster better health outcomes.