Variations in Meaning and Community Response to Illness

这个项目考察了个人和社区了解疾病的方式，以及他们的解释如何影响他们的健康行为和医疗保健选择。它有助于当前的社会学研究，探索外行如何参与和改变科学研究和政策的过程。越来越多的统计证据表明，索马里难民群体的自闭症谱系障碍患病率高于所有其他族裔/种族群体。该项目审查了两个国家(明尼阿波利斯，明尼苏达州和加拿大多伦多)的自闭症儿童的索马里父母团体如何组织运动，以了解和解决他们的健康经历。每个地点的小组都制定了不同的治疗和疫苗接种方法。这是第一次考察少数群体理解自闭症经历的方式的研究。在这项研究中，研究者通过跨国比较发展了认知社区的概念，这具有理论和实践两方面的意义。这个项目有四个具体的目标：1)描述和解释父母关于自闭症发展的因果理论；2)描述多伦多和明尼阿波利斯自闭症儿童的父母的健康经历(从发现自闭症，到获得诊断，获得利益和资源，以及寻求治疗)；3)解释父母何时/是否参与或打造一场健康的社会运动；以及4)检查这三个先前动态之间的因果联系。国际和平协会将通过对明尼阿波利斯和多伦多的索马里家庭进行为期两年的定性研究来实现这些目标。这项关于自闭症认知社区形成的研究对理解健康行为和具有科学专业知识的外行人之间的互动具有深远的影响。这些信息可能会导致更好、更准确的医疗保健和对自闭症患者的支持的政策倡议，更不用说更好的关于疫苗怀疑和拒绝的信息。此外，少数族裔在自闭症研究中的代表性不足，该项目试图解决这一偏见。

This project examines the ways in which individuals and communities come to understand illness and how their explanations impact their health behavior and health care choices. It contributes to current sociological research which explores how laypeople get involved in and change the course of scientific research and policy. There is growing statistical evidence that Somali refugee populations have higher prevalence rates of autism spectrum disorder than all other ethnic/racial groups. This project examines the ways that groups of Somali parents of children with autism in two national contexts (Minneapolis, MN and Toronto, Canada) have forged movements to understand and address their health experiences. Groups in each location have developed divergent approaches to treatment and vaccine uptake. This is the first study to examine the ways in which minority groups make sense of their experiences with autism.In this research, the investigator develops the concept of "epistemic communities" through a cross-national comparison, which has both theoretical and practical implications. This project has four specific aims: 1) to describe and explain the causal theories parents have about the development of autism; 2) to describe the health experiences of parents of children with autism (from the discovery of the disorder, through securing diagnosis, accessing benefits and resources, and seeking treatment) in Toronto and Minneapolis; 3) to explain when/if parents get involved in or forge a health social movement; and 4) to examine the causal links between these three previous dynamics. The PI will accomplish these aims through two years of qualitative research of Somali families in Minneapolis and Toronto. This research into the formation of epistemic communities on autism has profound implications for understanding health behavior and the interaction of laypeople with scientific expertise. Such information could lead to better and more accurate policy initiatives on health care and support for those with autism, not to mention better information on vaccine skepticism and refusal. Further, racial minorities have been underrepresented in the research on autism, and this project seeks to address this bias.