儿科到成人护理的过渡：镰状细胞病青年的观点。
Pediatric to Adult Care Transition: Perspectives of Young Adults With Sickle Cell Disease.
机构信息
Department of Psychology, St. Jude Children's Research Hospital, Memphis, TN.
出版信息
J Pediatr Psychol. 2017 Oct 1;42(9):1016-1027. doi: 10.1093/jpepsy/jsx088.
Abstract
OBJECTIVES
The aim of this study was to explore perspectives of transition and transition readiness of young adult patients (YAs) with sickle cell disease (SCD) who have transitioned to adult health care.
METHODS
In all, 19 YAs with SCD (ages 18-30 years) participated in one of three focus groups and completed a brief questionnaire about transition topics. Transcripts were coded and emergent themes were examined using the social-ecological model of adolescent and young adult readiness for transition (SMART).
RESULTS
Themes were consistent with most SMART components. Adult provider relationships and negative medical experiences emerged as salient factors. YAs ranked choosing an adult provider, seeking emergency care, understanding medications/medication adherence, knowing SCD complications, and being aware of the impact of health behaviors as the most important topics to include in transition programming.
CONCLUSIONS
The unique perspectives of YAs can inform the development and evaluation of SCD transition programming by incorporating the identified themes.
摘要
目的
本研究旨在探讨已过渡到成人保健的镰状细胞病（SCD）年轻成年患者（YAs）的过渡和过渡准备情况。
方法
共有 19 名 SCD 青少年（18-30 岁）参加了三个焦点小组中的一个，并完成了一份关于过渡主题的简短问卷。对转录本进行编码，并使用青少年和年轻成人过渡准备的社会生态模式（SMART）检查出现的主题。
结果
主题与 SMART 的大多数组成部分一致。成年提供者关系和负面医疗经历是突出的因素。YAs 将选择成年提供者、寻求紧急护理、了解药物/药物依从性、了解 SCD 并发症以及了解健康行为的影响列为过渡计划中最重要的主题。
结论
通过纳入确定的主题，可以为 SCD 过渡计划的制定和评估提供 YAs 的独特观点。
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