Factors Predicting Transition Readiness in Youth with Sickle Cell Disease

项目摘要/摘要 从儿科向成人保健环境的过渡对以下疾病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。过渡准备就是获得疾病- 青少年和青少年成功转型所需的专门知识和自我管理技能 成人(Aya)从儿科到成人医疗保健。到目前为止，很少有研究着眼于可能影响 在有镰状细胞的AYA中，过渡准备情况，一种疾病特异性知识和自我管理的衡量标准 疾病。这限制了医疗保健提供者和研究人员开发针对 人口的独特需求。这项相关的横断面研究的目的是检查 决策介入与镰状细胞病自我管理自我效能的关系 在过渡到成人保健环境之前，患有镰状细胞疾病的AYA的过渡准备情况。这 研究项目与国家护理研究所促进发展的使命是一致的 自我管理。本项目的具体目标是描述影响AYA水平的因素 当他们进入成人保健环境时，过渡准备和独立照顾自己的能力。 这项研究项目也与健康人口2020年目标相一致，以确保“发展、健康、安全、 和青少年的福祉“；这项研究将评估我们对各种因素的理解上的差距 影响过渡准备情况，使我们无法有效干预以改善之后的健康结果 过渡到成人医疗保健环境。这项横断面研究是由个人和 家庭自我管理理论框架认为自我管理的发展受 家庭和个人内部的各种因素。共有50个家庭照顾者-儿童二人组将被用作 这项研究的参与者基于这一理论的断言和权力分析。将进行招聘 在华盛顿哥伦比亚特区的一家城市学术儿童医院。一次性数据收集将 利用三种经过验证的测量工具：Aya自我报告、照顾者自我报告和电子医疗 唱片。将在辅助下使用社会科学统计程序包第25版进行分析 一个统计学家的身份。这项研究的长期好处包括增加对有助于 预测患有镰状细胞疾病的阿雅患者的过渡准备情况。该项目的结果将有助于设计未来 研究、干预和循证项目，以改善青少年和青年的过渡 患有镰状细胞病的成年人。

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.