Between Two Worlds: Amish Children with Special Health Care Needs

描述（由申请人提供）：在所有18岁以下的儿童中，约有13%（或940万）有特殊的医疗保健需求。这些儿童需要的保健服务超出儿童一般需要的保健服务。在美国，高达45%的儿童使用某种形式的补充或替代医学（CAM），但只有34%的家庭向医生报告了这种使用情况。关于保健的文化观点和信仰影响着家庭关于治疗子女的决定，包括他们使用辅助生殖疗法的决定。鼓励保健提供者将家庭纳入保健决定。世界卫生组织（世卫组织）和新区域研究所鼓励卫生保健提供者确保患者及其家属获得符合其文化卫生信仰和首选语言的护理。旧秩序阿米什人（简称阿米什人）家庭使用替代疗法治疗其子女的健康问题，但他们不禁止其成员向生物医学保健提供者寻求治疗。阿米什文化信仰与辅助医疗实践的相互作用及其与保健专业人员在管理其儿童疾病方面的关系尚未得到研究。本研究的目的是确定：1)Amish家庭照顾有特殊保健需要的儿童（CSHCN）所使用的CAM做法，以及2)Amish家庭如何与保健提供者合作，将CAM和儿童生物医学保健结合起来。提出的人种学设计是揭示种族在文化、家庭和社区方法中照顾CSHCN中的作用的理想方法。通过研究过程，这些家庭在社会层面上存在的障碍和促进因素将变得明显。参与本研究的受试者将包括患有CSHCN的阿米什家庭、阿米什社区成员以及与患有CSHCN的阿米什家庭互动的卫生保健提供者。此外，这一进程将揭示生物医学和传统保健从业人员对治疗这些阿米什家庭的看法。这项关于旧秩序阿米什人的研究将为研究以信仰为基础的种族群体中CAM和生物医学保健实践的相互作用提供一个独特的机会。对于医疗专业人员来说，了解不同文化家庭中辅助医学的使用情况以及如何将其用于儿童健康健康网络，以便将这些知识纳入个性化的健康计划，这一点非常重要。这些知识将使公共卫生专业人员能够更好地为这些社区服务。

DESCRIPTION (provided by applicant): Approximately 13% (or 9.4 million) of all children under age 18 have special health care needs. These children require health services beyond that generally required by children. In the US, up to 45% of all children use a form of complementary or alternative medicine (CAM), but only 34% of families report such use to physicians. Cultural perspectives and beliefs about health care influence decisions families make about treating their children, including their use of CAM. Health care providers are encouraged to incorporate the family into health care decisions. The World Health Organization (WHO) and NINR encourage health care providers to ensure that patients and their families receive care compatible with their cultural health beliefs and preferred language. Old Order Amish (referred to as Amish) families use alternative therapies to treat their children's' health problems, but they do not prohibit their members from seeking treatment from biomedical health care providers. The interaction of Amish cultural beliefs and CAM practices and their relationships with health care professionals in managing their child's illness have not been studied. The purpose of this research is to identify: 1) CAM practices used by Amish families caring for children with special health care needs (CSHCN) and 2) how Amish families work with health care providers to incorporate CAM and biomedical health care for children. The proposed ethnographic design is an ideal method to unveil the role of ethnicity in a cultural, family, and community approach to caring for CSHCN. It will become evident through the research process what barriers and facilitators exist for these families at a societal level. The subjects participating in this study will include Amish families who have a CSHCN, Amish community members, and health care providers who interact with Amish families with CSHCN. In addition, the process will unveil the perspectives of biomedical and traditional health care practitioners towards treatment of these Amish families. This research study about the Old Order Amish will provide a unique opportunity to study the interaction of CAM and biomedical health practices in a faith-based ethnic group. It is important for medical professionals to understand the use of CAM within families of various cultures and how it is used for their CSHCN in order to incorporate this knowledge into individualized health plans. This knowledge will enable public health professionals to better serve such communities.