Fernandes Susan M, O'Sullivan-Oliveira Joanne, Landzberg Michael J, Khairy Paul, Melvin Patrice, Sawicki Gregory S, Ziniel Sonja, Kenney Lisa B, Garvey Katharine C, Sobota Amy, O'Brien Rebecca, Nigrovic Peter A, Sharma Niraj, Fishman Laurie N
Lucile Packard Children's Hospital at Stanford, Palo Alto, CA, USA Department of Cardiology, Boston Children's Hospital, Boston, MA, USA.
Department of Surgery/Nursing, Boston Children's Hospital, Division of Nursing, Curry College, Boston, MA, USA.
J Pediatr Rehabil Med. 2014;7(1):43-51. doi: 10.3233/PRM-140269.
To determine patients' and parents' perceptions regarding the delivery of transition education and perceived barriers to transfer to adult oriented care.
A self-report survey was administered to a convenience sample of patients (16-25 years old) with various childhood onset chronic diseases. A similar survey was administered to their parents/guardians.
A total of 155 patients and 104 parents participated in the study. The mean age of patients was 18.8 ± 2.3 years; 57% were female. Although most patients and parents reported receiving information and training about their medical condition, significant gaps in other aspects of transition education were identified. These included stated deficiencies in education regarding unprotected intercourse, health of future offspring, birth control, pregnancy, illicit drug use, and future career or vocation counseling. Commonly cited barriers to transfer were emotional attachments and lack of adult medicine specialty providers; however, the majority anticipated being ready to transfer to adult oriented care by age 25 years.
There are significant gaps in the delivery of transition education as perceived by patients and their parents. Standardization of transition education may help ensure that patients acquire the knowledge and skills for health care self-management in adulthood and successful transfer to adult oriented care.
确定患者及其父母对过渡性教育的提供情况以及向成人导向型护理过渡的感知障碍的看法。
对患有各种儿童期起病的慢性病的患者（16 - 25岁）的便利样本进行了一项自我报告调查。对他们的父母/监护人进行了类似的调查。
共有155名患者和104名父母参与了该研究。患者的平均年龄为18.8±2.3岁；57%为女性。尽管大多数患者和父母报告接受了有关其病情的信息和培训，但在过渡性教育的其他方面发现了重大差距。这些差距包括在关于无保护性行为、未来后代健康、节育、怀孕、非法药物使用以及未来职业咨询等方面的教育不足。常见的过渡障碍包括情感依恋和缺乏成人医学专科提供者；然而，大多数人预计到25岁时准备好过渡到成人导向型护理。
患者及其父母认为在过渡性教育的提供方面存在重大差距。过渡性教育的标准化可能有助于确保患者获得成年后医疗保健自我管理的知识和技能，并成功过渡到成人导向型护理。
