Development of a Parent Navigator Program for Pediatric Sickle Cell Anemia

儿童镰状细胞性贫血家长导航程序的开发

• 批准号: 8525427
• 负责人: Jean L. Raphael
• 金额: $ 12.94万
• 依托单位: BAYLOR COLLEGE OF MEDICINE
• 依托单位国家: 美国
• 财政年份: 2011
• 资助国家: 美国
• 起止时间: 2011-08-17 至 2016-07-31
• 项目状态: 已结题
• 来源: https://reporter.nih.gov/project-details/8525427
• 关键词: 12 year old; Address; Adherence; Admission activity; Adult; Affect; Basic Science; Behavior; Behavioral; Behavioral Sciences; Caring; Characteristics; Charge; Child; Child Care; Child health care; Childhood; Chronic; Chronic Disease; Clinical; Clinical Management; Clinical Research; Community Services; Comprehensive Health Care; Control Groups; Data; Development; Diagnosis; Disease Management; Elements; Emergency medical service; Ensure; Environment; Evolution; Focus Groups; Future; Goals; Health; Health Resources; Health Services; Health Services Research; Health education; Health system; Healthcare; Hematology; Hospitalization; Hospitals; Improve Access; Infant; Inpatients; Intervention; Knowledge; Longitudinal Studies; Measures; Medical; Medicine; Mentors; Minority; Modality; Modeling; Morbidity - disease rate; Motivation; Outcome; Parents; Patients; Pattern; Pediatrics; Performance; Population; Population Intervention; Poverty; Premature Mortality; Preventive; Primary Health Care; Principal Investigator; Qualitative Methods; Quality of Care; Randomized Controlled Trials; Research; Research Methodology; Research Personnel; Research Project Grants; Resources; School-Age Population; Self Management; Sickle Cell Anemia; Stroke; Subgroup; Testing; Therapeutic; Visit; Work; base; cancer care; clinical epidemiology; college; compliance behavior; cost; design; efficacy testing; experience; follow-up; health belief; health care service utilization; health related quality of life; improved; innovation; insight; medical complication; novel; patient oriented; patient oriented research; pediatrician; professor; programs; screening; skills; uptake

DESCRIPTION (provided by applicant): Dr. Raphael is an Assistant Professor of Pediatrics at Baylor College of Medicine (BCM) and a general pediatrician. He is also an investigator in the Clinical Epidemiology and Outcomes Program of the Section of Health Services Research at BCM. His long-term goal is to become an independent, patient-oriented investigator focusing on improving adherence to preventive care for minority children with chronic conditions, with an emphasis on children with sickle cell disease (SCD). The applicant will accomplish this goal through patient-oriented research, formal mentoring by recognized experts, such as Drs. Thomas Giordano and Lovell Jones, and advanced, graduate-level coursework in behavioral science, qualitative methods, and advanced research methods. The applicant's research goal will be to develop a parent navigator program for parents of school-age children with SCD in order to improve adherence to preventive care and overall retention in care. Patient navigation is a barrier focused intervention that utilizes health workers in order to help patients overcome barriers to receiving timely health care services. This research project will use navigation to address major obstacles to the receipt of high quality care and improved health outcomes for children with SCD. The overall hypothesis is that modifiable parental factors, including information, motivation, and behavioral skills influence adherence to preventive care for children. Understanding of the relationships between these factors and adherence can, in turn, be utilized to design an innovative, culturally appropriate, and parent-focused intervention founded on patient navigation principles. The applicant will develop a navigator program based on a longitudinal study, parent focus groups, and input from an expert panel. The first specific aim is to assess in a longitudinal study of children with SCD the relationship between patient-related factors, including IMB measures, barriers, and facilitators, and patient adherence to preventive care and health resource utilization. The second specific aim is to develop a 6-month parent navigator program for parents of school-age children with SCD. The third specific aim is to test the feasibility of a 6- month pilot parent navigator program on health outcomes, including adherence to SCD preventive care visits, health service use, and health-related quality of life. This research will expand upon the principal investigator's current skills and past work by taking advantage of an outstanding research and mentoring environment, allowing him to acquire new and refined skills in the design and performance of patient oriented clinical research, so that he will be an independent researcher improving the health of children with SCD . Dr. Raphael's proposed activities will provide him with a special capacity to utilize new insights into the behavioral and motivational elements of disparities, and therefore ensure that the usual focus on adherence is truly responsive to motivational and behavioral characteristics.

描述（由申请人提供）：拉斐尔博士是贝勒医学院（BCM）的儿科助理教授和一名普通儿科医生。他还是BCM卫生服务研究部分临床流行病学和成果计划的研究者。他的长期目标是成为一名独立的，以患者为导向的研究者，致力于提高遵守慢性疾病的少数族裔儿童的依从性，重点是镰状细胞病（SCD）。申请人将通过以患者为导向的研究来实现这一目标，并由公认的专家（例如DRS）正式指导。 Thomas Giordano和Lovell Jones，以及行为科学，定性方法和高级研究方法的高级研究生课程。 申请人的研究目标是为SCD学龄儿童的父母制定家长导航员计划，以提高对预防性护理和整体保留护理的依从性。患者导航是一种以障碍为中心的干预措施，它利用卫生工作者来帮助患者克服及时的卫生保健服务的障碍。该研究项目将使用导航来解决主要的障碍，以获得高质量的护理，并改善SCD儿童的健康状况。总体假设是，可修改的父母因素，包括信息，动机和行为技能影响儿童预防性护理的依从性。理解这些因素与依从性之间的关系又可以用来设计建立在患者导航原则上的创新，适合父母的干预措施。申请人将根据纵向研究，家长焦点小组和专家小组的意见制定导航器计划。 第一个具体目的是在对患有SCD的儿童的纵向研究中评估患者相关因素（包括IMB措施，障碍和促进者）之间的关系，以及患者对预防保健和健康资源利用的依从性。第二个具体目的是为SCD学龄儿童的父母制定一个为期6个月的家长导航员计划。第三个具体目的是测试一个为期6个月的飞行员父母导航计划对健康成果的可行性，包括遵守SCD预防性护理访问，健康服务使用和与健康相关的生活质量。 这项研究将通过利用出色的研究和指导环境来扩展主要研究者的当前技能和过去的工作，使他能够在以患者为导向的临床研究的设计和表现方面获得新的和精致的技能，以便他成为一名独立的研究人员，以改善SCD儿童的健康。拉斐尔（Raphael）博士提出的活动将为他提供特殊的能力，以利用对差异的行为和动机要素的新见解，因此确保对遵守的通常关注对动机和行为特征确实有反应。