Factors Predicting Transition Readiness in Youth with Sickle Cell Disease

镰状细胞病青少年过渡准备的预测因素

基本信息

批准号：
9906401
负责人：
Maureen M Varty
金额：
$ 2.83万
依托单位：
UNIVERSITY OF MISSOURI-COLUMBIA
依托单位国家：
美国
项目类别：
财政年份：
2019
资助国家：
美国
起止时间：
2019-09-30 至 2020-07-31
项目状态：
已结题

来源：
https://reporter.nih.gov/project-details/9906401
关键词：
Achievement Acute Address Adolescent and Young Adult Adult Affect African American Age Area Attention Caregivers Caring Cessation of life Child Childhood Comorbidity Complex Computerized Medical Record Correlation Studies Cross-Sectional Studies Data Collection Decision Making Development Discrimination Disease Disease Management District of Columbia Early identification Ensure Environment Face Family Family Caregiver Family Characteristics Future Goals Health Health Personnel Health system Healthcare Healthy People 2020 Hereditary Disease Individual Information Resources Management Intervention Knowledge Longitudinal Studies Measurement Measures Medical Mission Morbidity - disease rate National Institute of Nursing Research Neurologic Outcome Pain Participant Patient Self-Report Patients Pediatric Hospitals Perception Personal Satisfaction Population Poverty Predictive Factor Preparation Process Readiness Research Research Personnel Research Project Grants Risk Safety Self Efficacy Self Management Sickle Cell Anemia Social Sciences Structure Time Transfusion United States Visit Washington Work Youth acute chest syndrome adverse outcome base cost design evidence base experience health care settings health disparity high risk hydroxyurea improved mortality multi-component intervention power analysis prevent programs psychologic recruit skills socioeconomics theories tool young adult

项目摘要

Project Summary / Abstract Transition from pediatric to adult healthcare settings poses significant risks to morbidity and mortality for adolescents and young adults with sickle cell disease. Transition readiness is the acquisition of disease- specific knowledge and self-management skills required for successfully transitioning adolescents and young adults (AYA) from pediatric to adult healthcare. To date, few studies have looked at factors that may influence transition readiness, a measure of disease-specific knowledge and self-management, in AYAs with sickle cell disease. This limits healthcare providers’ and researchers’ abilities to develop interventions specific to the unique needs of the population. The aim of this correlational, cross-sectional study is to examine the relationships between decision-making involvement, self-efficacy of sickle cell disease self-management, and transition readiness in AYAs with sickle cell disease prior to transition to adult healthcare settings. This research project is consistent with National Institute of Nursing Research’s mission to increase development of self-management. The specific aims of this project are to describe factors which influence the AYA’s level of transition readiness and ability to independently care for themselves as they enter the adult healthcare setting. This research project also aligns with the Healthy People 2020 goal to ensure the “development, health, safety, and well-being of adolescents and young adults”; this study will assess gaps in our understanding of factors influencing transition readiness which prevent us from effectively intervening to improve health outcomes after transition to the adult healthcare setting. This cross-sectional study is being guided by the Individual and Family Self-Management Theory framework that asserts development of self-management is influenced by a variety of factors within the family and the individual. A total of 50 family caregiver-child dyads will be utilized as participants for this study based upon the assertions of this theory and a power analysis. Recruitment will occur at an urban, academic children’s hospital in Washington, District of Columbia. One-time data collection will utilize three validated measurement tools, AYA self-report, caregiver self-report, and the electronic medical record. Analysis will be conducted using Statistical Package for Social Sciences Version 25 with the assistance of a statistician. Long-term benefits of this research include increased understanding of factors that can help to predict transition readiness in AYA with sickle cell disease. Results of this project will assist in designing future research, interventions, and evidence-based projects to improve the transitions of adolescents and young adults with sickle cell disease.

项目概要/摘要从儿科医疗保健环境过渡到成人医疗保健环境对儿童的发病率和死亡率构成重大风险患有镰状细胞病的青少年和年轻人做好了过渡准备。成功过渡青少年和年轻人所需的具体知识和自我管理技能迄今为止，很少有研究关注可能影响成人医疗保健的因素。镰状细胞病 AY 中的过渡准备情况，衡量特定疾病知识和自我管理的指标这限制了医疗保健提供者和研究人员制定针对该疾病的干预措施的能力。这项相关的横断面研究的目的是检查人口的独特需求。决策参与、镰状细胞病自我管理的自我效能和患有镰状细胞病的 AYA 在过渡到成人医疗机构之前做好过渡准备。研究项目符合国家护理研究所的使命，即促进护理的发展该项目的具体目标是描述影响 AYA 水平的因素。当他们进入成人医疗保健环境时，过渡准备和独立照顾自己的能力。该研究项目也与“健康人类2020”目标相一致，以确保“发展、健康、安全、以及青少年和年轻人的福祉”；这项研究将评估我们对因素的理解差距过渡准备状态使我们无法有效干预以改善过渡后的健康结果这项横断面研究是由个人和成人指导的。家庭自我管理理论框架主张自我管理的发展受到家庭自我管理的影响。家庭和个人内部的各种因素将总共使用 50 个家庭照顾者-儿童二人组。将根据该理论的主张和能力分析招募本研究的参与者。哥伦比亚特区华盛顿市的一家城市学术儿童医院将进行一次性数据收集。利用三种经过验证的测量工具：AYA 自我报告、护理人员自我报告和电子医疗分析将在社会科学统计软件包第25版的协助下进行。这项研究的长期好处包括加深对有助于统计的因素的了解。预测患有镰状细胞病的 AYA 的过渡准备情况，该项目的结果将有助于设计未来。旨在改善青少年过渡的研究、干预措施和循证项目患有镰状细胞病的成年人。