CBPR Initiative in Reducing Infant Mortality in American Indian Communities

描述（由申请人提供）：拟议研究的目的是让美国印第安社区参与干预措施的设计和实施，以降低婴儿猝死综合征（SIDS）和其他因不安全睡眠环境导致的相关婴儿死亡的风险。美洲印第安人/阿拉斯加原住民（AI/AN）承担着不成比例的婴儿死亡负担。根据疾病控制和预防中心（CDC）的数据，AI/AN的婴儿死亡率是非西班牙裔白人的1.6倍，死于SIDS的可能性是非西班牙裔白色婴儿的1.7倍。虽然婴儿死亡率有所下降，但美国北方平原印第安人的婴儿死亡率为每1 000名活产婴儿中有3.46人死亡，而美国婴儿死亡率为每1 000名活产婴儿中有0.54人死亡。按种族分列的婴儿死亡率差异主要是由新生儿后期死亡率造成的。 新生儿后期死亡发生在分娩后28天，主要与SIDS和婴儿护理实践有关，包括睡眠环境相关因素，这些因素在很大程度上被认为是可以预防的。来自其他种族人群的研究的令人信服的证据表明，家庭和文化规范，对婴儿睡眠，安全和舒适的态度和个人信念与婴儿睡眠环境的选择密切相关。目前的安全睡眠信息可能与美国印第安人社区的固有文化信仰相冲突。这种与科学关于安全睡眠的建议的冲突可能会影响行为，即使在存在足够的安全睡眠实践知识的情况下。 这项提案提供了一个前所未有的机会，扩大我们目前在婴儿死亡率方面的工作，部分工作是通过小岛屿发展中国家和死产产前酒精问题网络（NICHD 2U 01-HD 045935）开展的。在此期间，我们成功地与婴儿死亡风险最高的社区进行了接触，并通过对话和信任建立了长期关系，以制定双方都同意的研究方案和程序。我们与当地诊所、医院和社区服务机构合作，开发了一个临床站点基础设施，旨在通过多个医疗保健环境和物理位置招募和跟踪妇女进行研究，以实现最佳保留和结果确定。 使用社区为基础的实验研究模型，我们将调查父母的知识，文化信仰和获得资源的决策有关婴儿睡眠环境的影响。社区的投入和反馈将用于制定一个文化嵌入式小组干预计划，由美国儿科学会婴儿安全睡眠建议支持。这项干预措施将通过一项随机开放试验进行测试，该试验包括150名美国印第安孕妇，将标准的安全睡眠教育形式与文化上适当的团体教育形式进行比较。

DESCRIPTION (provided by applicant): The objective of the proposed study is to engage American Indian communities in the design and implementation of an intervention to reduce the risk for Sudden Infant Death Syndrome (SIDS) and other related infant deaths due to unsafe sleep environments. American Indian/Alaskan Natives (AI/AN) carry a disproportionate burden of infant mortality. According to the Centers for Disease Control and Prevention (CDC), AI/AN have 1.6 times the infant mortality rate as non-Hispanic whites and are 1.7 times as likely as non-Hispanic white babies to die from SIDS. While there have been decreases in infant mortality rates, the Northern Plains American Indian SIDS rate is 3.46 per 1000 live births compared to the overall US SIDS rate of 0.54 per 1000 live births. The disparity between infant mortality rates by race is largely driven by post-neonatal mortality. Post-neonatal deaths occur after 28 days post-delivery and are primarily related to SIDS and infant care practices including, sleep environment related factors that are largely considered preventable. Compelling evidence from research in other racial populations suggests that family and cultural norms, attitudes and personal beliefs about infant sleep, safety and comfort are strongly associated with the choice of infant sleep environment. It may be possible that the current safe sleep messages are in conflict with inherent cultural beliefs within American Indian communities. This conflict with the scientifi recommendations regarding safe sleep may influence behavior, even in the presence of adequate knowledge about safe sleep practices. This proposal provides an unprecedented opportunity to expand our current work in infant mortality established, in part, through the Prenatal Alcohol in SIDS and Stillbirth (PASS) Network (NICHD 2U01- HD045935). During this time, we have successfully engaged communities at the highest risk of infant mortality and established long-term relationships through dialogue and trust, to develop mutually agreeable research protocols and procedures. In partnership with local clinics, hospitals and community service agencies, we have developed a clinical site infrastructure designed to recruit and follow women for research purposes through multiple health-care environments and physical locations to allow for optimal retention and outcome ascertainment. Using a Community Based Participatory Research model, we will investigate the influence of parental knowledge, cultural beliefs and access to resources on decision making regarding infant sleep environment. Community input and feedback will be utilized in development of a culturally embedded group intervention program, buoyed by the American Academy Pediatrics safe sleep recommendations for infants. The intervention will be tested using a randomized, open trial of a 150 pregnant American Indian women, comparing standard safe sleep education format to a culturally appropriate group education format.