Moving up: Healthcare transition experiences of adolescents and young adults with cystic fibrosis.
Moving up: Healthcare transition experiences of adolescents and young adults with cystic fibrosis.
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向上移动：患有囊性纤维化的青少年和年轻人的医疗过渡经验。
DOI：
10.1016/j.pedn.2022.03.007
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发表时间：
2022-07
影响因子：
2.4
通讯作者：
Smaldone, Arlene
中科院分区：
文献类型：
--
作者：
South, Katherine;George, Maureen;Sadeghi, Hossein;Piane, Victoria;Smaldone, Arlene
囊性纤维化（CF）从儿科到成人护理的医疗过渡经验仍然知之甚少，特别是在种族和民族多样化的青少年和年轻成人（AYAs）中。本定性研究的目的是探讨在一个城市的学术医疗中心关于医疗转型的CF的AYAs的多样化样本的观点。在定性描述方法的指导下，我们有目的地选择了代表转型前后经历的AYA：一些AYA经历了转型准备计划CF R.I.S.E.。使用在线调查收集人口统计信息和自我管理行为的责任。半结构化的视频访谈进行了迭代访谈指南。一种码本引导的归纳编码。使用QSR NVivo版本12软件组织数据。入组了12名患有CF的AYA（25%为女性，25%为黑人AYA，33%为西班牙裔/拉丁裔/o AYA，50%为白色AYA;平均年龄20.8岁）。确定了三个主题：独立照顾整个自我，准备改变和未知和过渡的经验各不相同。并非所有参与者都经历了平稳过渡。与会者确定了制定过渡准备干预措施的建议，特别是围绕让AYAs参与过渡决策和在青春期早期开始过渡准备。参与者表示不确定过渡时，他们觉得很少控制的过程中，或缺乏足够的信息，成人护理。因此，建议为所有患有CF的AYAs进行全面的早期过渡准备，重点是让AYAs参与过渡决策。
The experience of healthcare transition from pediatric to adult care in cystic fibrosis (CF) remains poorly understood, particularly among racially and ethnically diverse adolescents and young adults (AYAs) with CF. The objective of this qualitative study was to explore the perspectives of a diverse sample of AYAs with CF at one urban academic medical center regarding healthcare transition. Guided by qualitative descriptive methodology, we purposively selected AYAs who represented the pre and post transition experience: some AYAs had experienced the transition preparation program CF R.I.S.E. Demographic information and responsibility for self-management behaviors were collected using an online survey. Semi-structured video interviews were conducted following an iterative interview guide. A codebook directed inductive coding. QSR NVivo Version 12 software was used to organize the data. 12 AYAs with CF were enrolled (25% female, 25% Black AYA, 33% Hispanic/Latina/o AYA, 50% White AYA; mean age 20.8 years). Three themes were identified: independent care of the whole self, preparing for change and the unknown and transition experiences vary. Not all participants experienced a smooth transition. Participants identified suggestions for the development of transition preparation interventions, specifically around involving AYAs in transition decisions and beginning transition preparation early in adolescence. Participants expressed uncertainty about transition when they felt little control over the process or lacked sufficient information about adult care. Therefore, comprehensive early transition preparation for all AYAs with CF with a focus on involving AYAs in transition decisions is recommended.
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影响因子：
3.2
作者：
Hsieh, HF;Shannon, SE
通讯作者：
Shannon, SE
DOI：
10.2147/ahmt.s67943
发表时间：
2014
期刊：
Adolescent health, medicine and therapeutics
影响因子：
--
作者：
Garvey KC;Beste MG;Luff D;Atakov-Castillo A;Wolpert HA;Ritholz MD
通讯作者：
Ritholz MD
影响因子：
0.9
作者：
Baker, Anna M.;Riekert, Kristin A.;Eakin, Michelle N.
通讯作者：
Eakin, Michelle N.
DOI：
10.1080/24694193.2021.1933264
发表时间：
2023-07-03
影响因子：
2.1
作者：
Betz, Cecily L.;Coyne, Imelda;Hudson, Sharon M.
通讯作者：
Hudson, Sharon M.
影响因子：
2.2
作者：
Brumfield, K;Lansbury, G
通讯作者：
Lansbury, G