Highlights
Community‐based consultation led to identification of culturally‐grounded ethical principles.
Culturally grounded principles support research with American Indians and Alaska Natives.
Including culturally based principles in an ethics training curriculum supports research with AI/AN.
The Myspace project was launched in 2008 to develop a novel approach to engage with younger sexual health service users. The aim was to use a social networking site as a patient forum, to gain feedback on how to improve services and to make sexual health information accessible to a larger audience, many of whom might not be current service users and thereby to encourage attendances from more 'hard to reach' groups. In this report, we explore the effectiveness and specific challenges of the project and in particular, the difficulty in achieving involvement in the discussion forum. We discuss the future of the project and make recommendations to other services considering this approach.
The primary aim of this study was to develop an American Indian and Alaska Native (AIAN) tailored research with human subjects curriculum that would increase the participation of AIAN members in research affecting their communities. We used a community-engaged research approach to co-design and evaluate a culturally tailored online human subjects curriculum among a national sample of AIAN community members (n = 244) with a standard nationally used online curriculum (n = 246). We evaluated pre-and post-test measures to assess group differences in ethics knowledge, perceived self-efficacy to apply such knowledge to protocol review, and trust in research. Analysis of regional tribal differences assessed curriculum generalizability. Using an 80% correct item cut-off at first attempt as passing criterion, the tailored curriculum achieved a 59.3% passing rate versus 28.1% in the standard curriculum (p < .001). For both arms, participants reported a significant increase in trust in research and in research review efficacy. Participants took less time to complete the training and reported significantly higher acceptability, satisfaction, and understandability of the curriculum for the tailored curriculum. This culturally tailored research ethics curriculum has the potential to increase participation in AIAN communities in research affecting tribal members. The AIAN curriculum achieved significantly higher levels of participants’ research ethics knowledge, self-efficacy in reviewing research protocols, trust in research, and completion of the training requirements. Culturally grounded training curricula may help remedy the impact of historical research ethics abuses involving AIAN communities that have contributed to mistrust of research and lack of community engagement in research.
Culturally relevant interventions have the potential to improve adolescent health and protective factors associated with sexual risk taking. We evaluated the impact of the Native STAND curriculum with American Indian and Alaska Native (AI/AN or Native) high school students living across the U.S. using a pre-post evaluation design. Native STAND is a comprehensive sexual health curriculum for Native high school students that focuses on sexually transmitted infections, HIV/AIDS, and teen pregnancy prevention, while also covering drug and alcohol use, suicide, and dating violence. The curriculum was implemented in 48 AI/AN communities from 2014 to 2019. A significantly higher percentage of youth reported at post-test having a serious conversation about sex with their friends (post 36% vs. pre 28%, p < 0.001), thinking about lessons learned (post 24% vs. pre 7%, p < 0.0001), and sharing lessons learned during the conversation (post 21% vs. pre 4%, p < 0.001). A lower percentage of AI/AN youth reported being bullied in the last year (post 31% vs. pre 37%, p < 0.001). Family social support was moderated by dose, with subscale scores of 3.75 at post-with <27 sessions vs. 3.96 at post-with all 27 sessions (p = 0.02). The results demonstrate the effectiveness of Native STAND when delivered in a variety of settings. Efforts are now underway to update Native STAND for medical accuracy, improve alignment with typical class periods, and promote its use and an effective EBI for AI/AN youth.
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