Measuring Social Networks among Parents and Autism Heath Care Providers

衡量父母和自闭症医疗保健提供者之间的社交网络

• 批准号: 8032289
• 负责人: Stephen Raudenbush
• 金额: $ 19.5万
• 依托单位: UNIVERSITY OF CHICAGO
• 依托单位国家: 美国
• 财政年份: 2011
• 资助国家: 美国
• 起止时间: 2011-02-01 至 2013-01-31
• 项目状态: 已结题
• 来源: https://reporter.nih.gov/project-details/8032289
• 关键词: Address; Autistic Disorder; Caring; Cereals; Characteristics; Child; Child Behavior; Clinic; Clinical; Complex; Data; Data Collection; Development; Diagnosis; Economics; Education; Evaluation; Feasibility Studies; Future; Health; Healthcare; Human Resources; Intervention; Interview; Knowledge; Laws; Learning; Link; Measures; Mediating; Methodology; Methods; Modeling; Monitor; Parents; Pattern; Perception; Physicians; Pilot Projects; Play; Preparation; Provider; Public Health; Questionnaires; Race; Recruitment Activity; Reliability of Results; Research; Research Design; Research Project Grants; Role; Schools; Services; Site; Social Network; Social Sciences; Sociology; Special Education; Structure; Surveys; Techniques; Testing; Time; Treatment Protocols; Treatment outcome; Validity and Reliability; Variant; base; design; disability; experience; improved; innovation; outcome forecast; parental influence; parental role; racial and ethnic disparities; teacher

DESCRIPTION (provided by applicant): To manage a child's autism treatment, parents need access to knowledge about autism, treatment approaches, special education law, and local services, as well as the capacity to monitor and coordinate a child's treatment. Parents' interactions with teachers or other care providers as well as other parents are likely to be critical to their knowledge and monitoring capacity. The proposed research uses innovative social network techniques to examine how parents learn from other parents and from clinicians, teachers, and other personnel about their child's autism treatments. We hypothesize that social networks influence parents' knowledge about autism treatment as well as their capacity to monitor treatment. Because social network ties tend to form among socially similar people, we expect that networks will partially mediate the influence of parent SES and race on parent knowledge and monitoring capacity. In addition, we anticipate that the formation of network ties among parents and between parents and clinicians/educators will differ by type of organization (school, clinic). Research on network dynamics among parents, clinicians, and teachers involved in autism treatment support new intervention models that can improve the efficacy of autism treatment and address disparities. Although sophisticated network methodologies have been applied in other studies of health and health care, they have been little used in the study of autism care. Because of this dearth of research, pilot study is essential prior to a major network study on this topic. The proposed research has three specific aims: (1) to carry out qualitative data collection at three racially and economically diverse school or clinic sites; (2) based on this fieldwork, to develop and pretest a network survey for use with parents and autism care providers; (3) to implement this survey in a three-wave panel across the three study sites in order to test acceptability and feasibility and generate preliminary data. This study will generate hypotheses, yield a field-tested survey instrument, and provide preliminary evidence about the effects of social networks on parents' capacity to manage their child's autism treatment, laying the groundwork for larger-scale research and intervention. PUBLIC HEALTH RELEVANCE: Autism is a significant cause of disability, and the prognosis for children with autism depends upon the treatment they receive. Social networks may help parents better manage their children's autism care. This mixed-methods pilot study will develop a network survey and generate preliminary data for a larger research project to examine the role that social networks play in autism care and develop new interventions.

描述（由申请人提供）：为了管理儿童的自闭症治疗，父母需要获取有关自闭症，治疗方法，特殊教育法和当地服务的知识，以及监控和协调儿童治疗的能力。父母与老师或其他护理提供者以及其他父母的互动可能对他们的知识和监测能力至关重要。拟议的研究使用创新的社交网络技术来研究父母如何向其他父母和临床医生，老师和其他人员学习孩子的自闭症治疗。我们假设社交网络会影响父母对自闭症治疗的知识及其监测治疗的能力。由于社交网络关系倾向于在社会相似的人中形成，因此我们希望网络将部分介导父型SES和种族对父母知识和监测能力的影响。此外，我们预计父母之间以及父母和临床医生/教育工作者之间的网络关系形成会因组织类型（学校，诊所）而有所不同。对自闭症治疗的父母，临床医生和教师之间网络动态的研究支持新的干预模型，这些模型可以提高自闭症治疗的功效并解决差异。尽管已经在健康和医疗保健的其他研究中应用了复杂的网络方法，但它们在自闭症护理研究中却很少使用。由于缺乏研究，因此在对该主题进行主要网络研究之前，试点研究至关重要。拟议的研究具有三个特定的目的：（1）在三个种族和经济上多样化的学校或诊所地点进行定性数据收集； （2）基于此现场工作，开发和预测试网络调查，供父母和自闭症护理提供者使用； （3）在三个研究地点的三波小组中实施此调查，以测试可接受性和可行性并生成初步数据。这项研究将产生假设，产生经过现场测试的调查工具，并提供有关社交网络对父母管理孩子自闭症治疗能力的影响的初步证据，为大规模的研究和干预奠定了基础。 公共卫生相关性：自闭症是造成残疾的重要原因，自闭症儿童的预后取决于他们接受的治疗。社交网络可以帮助父母更好地管理孩子的自闭症护理。这项混合方法的试点研究将开发一项网络调查，并为一个更大的研究项目生成初步数据，以研究社交网络在自闭症护理中的作用并开发新的干预措施。