Hays Laura H, McSweeney Jean C, Mitchell Anita, Bricker Christina, Green Angela, Landes Reid D
Laura H. Hays, PhD, APRN, FAHA Clinical Assistant Professor, College of Nursing, University of Arkansas for Medical Sciences, Little Rock. Jean C. McSweeney, PhD, RN, FAHA Professor and Associate Dean for Research, College of Nursing, University of Arkansas for Medical Sciences, Little Rock. Anita Mitchell, PhD, RN Clinical Associate Professor, College of Nursing, University of Arkansas for Medical Sciences, Little Rock. Christina Bricker, PhD, APRN, FAHA Assistant Professor, College of Nursing, University of South Florida, Tampa. Angela Green, PhD, RN, FAHA Senior Director, Patient Safety and Quality, Johns Hopkins All Children's Hospital, St. Petersburg, Florida. Reid D. Landes, PhD Associate Professor, Department of Biostatistics, University of Arkansas for Medical Sciences, Little Rock.
J Cardiovasc Nurs. 2020 Nov/Dec;35(6):E33-E43. doi: 10.1097/JCN.0000000000000701.
Adults with congenital heart disease (CHD) are an emerging adult heart disease subset, now outnumbering the pediatric population with CHD.
We aimed to gain understanding and knowledge of what adults with CHD perceive as important for self-management and describe these needs across demographic factors, developmental characteristics, lesion severity, and quality of life.
We used a descriptive mixed-methods online survey merging 4 instruments: Adult CHD Self-management Experience Questionnaire; Adult CHD Demographic Questionnaire; Adaptive Behavior Assessment System, Third Edition; and Stanford Quality of Life Visual Numeric. Participants with CHD 18 to 30 years of age with initial defect repair before 12 months of age were recruited through support from the Adult Congenital Heart Association, clinic adult CHD support groups, and newspaper advertising. Thematic analysis for short-answer questions, descriptive analysis for demographic data and the visual numeric, and intrument-specific scoring assistant software for the Adaptive Behavior Assessment System were used.
We received 22 responses from 13 women and 9 men. These individuals represented 15 different heart defect diagnoses, mostly of moderate or complex lesion severity. Most had postsecondary education and were employed. Four prominent themes emerged related to self-management: desire for connectivity-psychological support; a plan for the future-education about health and life expectations; coping needs-skills for mental stress; and access to care-navigation of healthcare systems.
Future longitudinal research and replication studies with larger samples are needed. Educational materials and targeted interventions that promote self-management benefit the aging adult with CHD population.
患有先天性心脏病（CHD）的成年人是一个新兴的成人心脏病亚群，目前其数量已超过患有CHD的儿科人群。
我们旨在了解患有CHD的成年人认为对自我管理重要的内容，并描述这些需求在人口统计学因素、发育特征、病变严重程度和生活质量方面的情况。
我们使用了一种描述性混合方法在线调查，合并了4种工具：成人CHD自我管理经验问卷；成人CHD人口统计学问卷；第三版适应性行为评估系统；以及斯坦福生活质量视觉数字量表。通过成人先天性心脏病协会、临床成人CHD支持小组和报纸广告的支持，招募了18至30岁、在12个月龄之前进行了初始缺陷修复的CHD参与者。对简答题进行主题分析，对人口统计学数据和视觉数字量表进行描述性分析，并使用适应性行为评估系统的特定工具评分辅助软件。
我们收到了13名女性和9名男性的22份回复。这些个体代表了15种不同的心脏缺陷诊断，大多数病变严重程度为中度或复杂。大多数人接受过高等教育且有工作。出现了与自我管理相关的四个突出主题：对联系和心理支持的渴望；未来规划——关于健康和生活期望的教育；应对需求——心理压力应对技巧；以及获得医疗服务——医疗系统导航。
未来需要进行更大样本的纵向研究和重复研究。促进自我管理的教育材料和有针对性的干预措施对患有CHD的老年成年人有益。
