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本文引用的文献

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Living a normal life in an extraordinary way: A systematic review investigating experiences of families of young people's transition into adulthood when affected by a genetic and chronic childhood condition.以非凡的方式过正常生活:一项系统性综述,调查受遗传性和慢性儿童疾病影响的年轻人向成年过渡阶段家庭的经历。
Int J Nurs Stud. 2016 Oct;62:44-59. doi: 10.1016/j.ijnurstu.2016.07.007. Epub 2016 Jul 12.
2
Does Attendance at a Sickle Cell Educational Conference Improve Clinician Knowledge and Attitude Toward Patients with Sickle Cell Disease?参加镰状细胞病教育会议能否提高临床医生对镰状细胞病患者的认知和态度?
Pain Manag Nurs. 2016 Jun;17(3):226-34. doi: 10.1016/j.pmn.2016.05.001.
3
The Association of Clinician Characteristics with their Attitudes Toward Patients with Sickle Cell Disease: Secondary Analyses of a Randomized Controlled Trial.临床医生特征与其对镰状细胞病患者态度的关联:一项随机对照试验的二次分析
J Natl Med Assoc. 2015 Jun;107(2):89-96. doi: 10.1016/S0027-9684(15)30029-8. Epub 2015 Dec 2.
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Young Adult Perspectives on a Successful Transition from Pediatric to Adult Care in Sickle Cell Disease.青少年对镰状细胞病从儿科护理成功过渡到成人护理的看法。
J Hematol Res. 2015 Dec;2(1):17-24. doi: 10.12974/2312-5411.2015.02.01.3.
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Commentary: Writing and Evaluating Qualitative Research Reports.评论:定性研究报告的撰写与评估
J Pediatr Psychol. 2016 Jun;41(5):493-505. doi: 10.1093/jpepsy/jsw032. Epub 2016 Apr 26.
6
Applicability of the SMART Model of Transition Readiness for Sickle-Cell Disease.镰状细胞病过渡准备的SMART模型适用性。
J Pediatr Psychol. 2016 Jun;41(5):543-54. doi: 10.1093/jpepsy/jsv120. Epub 2015 Dec 30.
7
Transitioning Adolescents and Young Adults With Sickle Cell Disease From Pediatric to Adult Health Care: Provider Perspectives.镰状细胞病青少年和青年从儿科医疗向成人医疗过渡:医疗服务提供者的观点
J Pediatr Hematol Oncol. 2015 Nov;37(8):577-83. doi: 10.1097/MPH.0000000000000427.
8
Reproductive Health CHOICES for Young Adults with Sickle Cell Disease or Trait: Randomized Controlled Trial Outcomes over Two Years.镰状细胞病或特征性镰状细胞性状青年的生殖健康选择:两年的随机对照试验结果
J Genet Couns. 2016 Apr;25(2):325-36. doi: 10.1007/s10897-015-9874-0. Epub 2015 Aug 28.
9
Improving Clinician Attitudes of Respect and Trust for Persons With Sickle Cell Disease.改善临床医生对镰状细胞病患者的尊重和信任态度。
Hosp Pediatr. 2015 Jul;5(7):377-84. doi: 10.1542/hpeds.2014-0171.
10
Transition Needs of Adolescents With Sickle Cell Disease.镰状细胞病青少年的过渡需求。
Am J Occup Ther. 2015 Mar-Apr;69(2):6902350030p1-5. doi: 10.5014/ajot.2015.013730.

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.

DOI:10.1093/jpepsy/jsx088
PMID:28637291
原文链接:https://pmc.ncbi.nlm.nih.gov/articles/PMC6251560/
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。