Between Two Worlds: Amish Children with Special Health Care Needs

描述(申请人提供)：约13%(或940万)的18岁以下儿童有特殊的医疗保健需求。这些儿童需要的卫生服务超出了儿童的一般需求。在美国，多达45%的儿童使用一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。关于医疗保健的文化观点和信仰影响着家庭关于治疗孩子的决定，包括他们对CAM的使用。鼓励卫生保健提供者将家庭纳入卫生保健决策。世界卫生组织(WHO)和NINR鼓励卫生保健提供者确保患者及其家人接受与他们的文化健康信仰和首选语言相适应的护理。旧秩序阿米什(简称阿米什)家庭使用替代疗法来治疗孩子的健康问题，但他们并不禁止其成员向生物医学保健提供者寻求治疗。还没有研究阿米什文化信仰和CAM做法的相互作用，以及他们在管理孩子疾病方面与卫生保健专业人员的关系。这项研究的目的是确定：1)照顾有特殊卫生保健需求儿童(CSHCN)的阿米什家庭使用的CAM做法；2)阿米什家庭如何与卫生保健提供者合作，将CAM和儿童的生物医学卫生保健结合起来。建议的民族志设计是一种理想的方法，可以揭示种族在文化、家庭和社区方法中的作用，以照顾CSHCN。通过研究过程，这些家庭在社会层面上存在哪些障碍和促进者将变得显而易见。参与这项研究的对象将包括拥有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卫生保健从业者对这些阿米什家庭治疗的看法。这项关于旧秩序亚米希人的研究将提供一个独特的机会来研究在一个以信仰为基础的种族群体中CAM与生物医学健康实践的相互作用。对于医疗专业人员来说，了解不同文化家庭中CAM的使用以及如何将其用于CSHCN，以便将这一知识纳入个性化的健康计划，这一点很重要。这一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.