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Native WYSE CHOICES adapted an Alcohol Exposed Pregnancy (AEP) prevention curriculum for mobile health delivery for young urban American Indian and Alaska Native (AIAN) women. This qualitative study explored the relevance of culture in adapting a health intervention with a national sample of urban AIAN youth. In total, the team conducted 29 interviews across three iterative rounds. Participants expressed interest in receiving culturally informed health interventions, were open to cultural elements from other AIAN tribes, and highlighted the importance of culture in their lives. The study underscores why community voices are central in tailoring health interventions for this population.
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BACKGROUND: While the advantages of using the internet and social media for research recruitment are well documented, the evolving online environment also enhances motivations for misrepresentation to receive incentives or to "troll" research studies. Such fraudulent assaults can compromise data integrity, with substantial losses in project time; money; and especially for vulnerable populations, research trust. With the rapid advent of new technology and ever-evolving social media platforms, it has become easier for misrepresentation to occur within online data collection. This perpetuation can occur by bots or individuals with malintent, but careful planning can help aid in filtering out fraudulent data. OBJECTIVE: Using an example with urban American Indian and Alaska Native young women, this paper aims to describe PRIOR (Protocol for Increasing Data Integrity in Online Research), which is a 2-step integration protocol for combating fraudulent participation in online survey research. METHODS: From February 2019 to August 2020, we recruited participants for formative research preparatory to an online randomized control trial of a preconceptual health program. First, we described our initial protocol for preventing fraudulent participation, which proved to be unsuccessful. Then, we described modifications we made in May 2020 to improve the protocol performance and the creation of PRIOR. Changes included transferring data collection platforms, collecting embedded geospatial variables, enabling timing features within the screening survey, creating URL links for each method or platform of data collection, and manually confirming potentially eligible participants' identifying information. RESULTS: Before the implementation of PRIOR, the project experienced substantial fraudulent attempts at study enrollment, with less than 1% (n=6) of 1300 screened participants being identified as truly eligible. With the modified protocol, of the 461 individuals who completed a screening survey, 381 did not meet the eligibility criteria assessed on the survey. Of the 80 that did, 25 (31%) were identified as ineligible via PRIOR. A total of 55 (69%) were identified as eligible and verified in the protocol and were enrolled in the formative study. CONCLUSIONS: Fraudulent surveys compromise study integrity, validity of the data, and trust among participant populations. They also deplete scarce research resources including respondent compensation and personnel time. Our approach of PRIOR to prevent online misrepresentation in data was successful. This paper reviews key elements regarding fraudulent data participation in online research and demonstrates why enhanced protocols to prevent fraudulent data collection are crucial for building trust with vulnerable populations. TRIAL REGISTRATION: ClinicalTrials.gov NCT04376346; https://www.clinicaltrials.gov/study/NCT04376346. INTERNATIONAL REGISTERED REPORT IDENTIFIER (IRRID): DERR1-10.2196/52281.
Assuntos
Indígena Americano ou Nativo do Alasca , Confiabilidade dos Dados , Fraude , Seleção de Pacientes , Adolescente , Feminino , Humanos , Adulto Jovem , Nativos do Alasca , Fraude/prevenção & controle , Indígenas Norte-Americanos , Internet , População Urbana , Enganação , ConfiançaRESUMO
BACKGROUND: Fetal Alcohol Spectrum Disorders (FASD) result in lifelong disability and are a leading cause of preventable birth defects in the US, including for American Indian and Alaska Natives (AIANs). Prevention of alcohol exposed pregnancies (AEPs), which can cause FASD, is typically aimed at adult women who are risky drinkers and have unprotected sex. Among AIANs, AEP prevention research has been primarily conducted in reservation communities, even though over 70% of AIANs live in urban areas. Culturally appropriate AEP prevention for urban AIAN young women, regardless of current drinking or sexual behaviors, may maximize the potential for primary prevention at the beginning of the reproductive years for this underserved population. METHODS: We developed a virtual randomized controlled trial (RCT) - fully implemented through technology - to evaluate Native WYSE CHOICES, a culturally tailored mobile app, with urban AIAN young women ages 16-20 nationally. While virtual RCTs are not new, this is the first engaging a solely urban AIAN population, historically excluded from research. Participants are recruited on a rolling basis through the project social media community, organizational partnerships, and in-person events. Eligible participants complete a baseline survey and are randomized to either the app's intervention or comparison arm - each of which provide about 3 h of content. Follow-up data are collected at 1-, 6-, and 12-months post-baseline. RESULTS: Our study offers a template for building trust and extending reach to this underserved population while also providing important lessons and insights on advances in virtual or hybrid research approaches.
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Indígena Americano ou Nativo do Alasca , Transtornos do Espectro Alcoólico Fetal , Aplicativos Móveis , Adolescente , Adulto , Feminino , Humanos , Gravidez , Adulto Jovem , Transtornos do Espectro Alcoólico Fetal/prevenção & controle , Ensaios Clínicos Controlados Aleatórios como AssuntoRESUMO
Health advocates are increasingly using social media and mobile technology to reach American Indian and Alaska Native (AI/AN) youth to address important health topics and enhance protective factors. Public health experts did not know to what extent AI/AN youth used these tools to access health resources during the pandemic. The Native Youth Health Tech Survey was administered online from October to November 2020 with 349 AI/AN youth 15 to 24 years old. Survey results indicated frequent technology use-68.7% sent 1-50 text messages per day, and 65.3% were on social media 3-7 hours per day. Instagram was the most popular channel used, and 53.5% of participants relied heavily on the Internet to access health information. The three most important health topics were Native identity, mental health, and social justice and equality. These findings can inform the design and dissemination of culturally grounded health resources across AI/AN communities to improve their reach and appeal, improving health outcomes, self-esteem, and cultural connectedness.
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Indígenas Norte-Americanos , Adolescente , Adulto , Humanos , Saúde Mental , Fatores de Proteção , Adulto JovemRESUMO
The tryptophans of integral membrane proteins have been suggested to play specific roles as "interfacial anchors", based on their preference for a location near the lipid head groups. Still, the underlying mechanism behind this behavior remains unclear. NMR experiments can provide an important tool to study this interaction in an actual bilayer environment. Here solid-state deuterium nuclear magnetic resonance was used to study the tryptophans in membrane-spanning model peptides from the WALP family (acetyl-GWW(LA)nWWA-ethanolamide with n = 5 and 6.5) in samples of mechanically aligned dimyristoylphosphatidylcholine (DMPC) bilayers. The data indicate that the tryptophans near the C-terminal end of the peptide display a significantly different behavior from those near the N-terminus. This is reflected prominently in a large difference in the motion experienced by the indoles at either end of the peptide, highlighting the directionality of the helix. Nevertheless, our observations indicate high levels of motional freedom for all tryptophans in these membrane spanning domains that exceed the dynamics for the helix itself. These observations signify that steric and dynamic features of the polypeptide context modulate the tryptophan anchoring in the membrane interface. Measurements of WALP19 in the ether-linked DMPC analogue ditetradecylphosphatidylcholine (missing the lipid carbonyls) show very similar Trp dynamics and suggest similar orientations for some or all of the tryptophans. This suggests that the lipid acyl chain carbonyls play at most a minor role in the anchoring interaction between these Trp residues and the DMPC interfacial region.