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2
Development of a patient-reported outcome measure for the assessment of symptom burden in pediatric chronic kidney disease (PRO-Kid).开发一种用于评估儿童慢性肾脏病症状负担的患者报告结局量表(PRO-Kid)。
Pediatr Nephrol. 2022 Jun;37(6):1377-1386. doi: 10.1007/s00467-021-05269-4. Epub 2021 Nov 10.
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Depression in Adolescents.青少年抑郁症
N Engl J Med. 2021 Jul 29;385(5):445-449. doi: 10.1056/NEJMra2033475.
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Digital Self-Management Support Tools in the Care Plan of Patients With Cancer: Review of Randomized Controlled Trials.癌症患者护理计划中的数字自我管理支持工具:随机对照试验综述。
J Med Internet Res. 2021 Jun 29;23(6):e20861. doi: 10.2196/20861.
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The impact of medication synchronization programs on medication adherence: A meta-analysis.药物同步化计划对用药依从性的影响:一项荟萃分析。
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8
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A simple method to assess and report thematic saturation in qualitative research.一种评估和报告定性研究主题饱和度的简单方法。
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在一个不同且破碎的世界中照顾自己:透析青少年的自我护理实践。

Taking care of myself in a different and broken world: self-care practices of adolescents on dialysis.

机构信息

Department of Pediatric Nursing, Universidad del Valle, Cali, Colombia.

Department of Pediatric Nursing, Universidad del Valle Retired, Cali, Colombia.

出版信息

Int J Qual Stud Health Well-being. 2023 Dec;18(1):2171562. doi: 10.1080/17482631.2023.2171562.

DOI:10.1080/17482631.2023.2171562
PMID:36722818
原文链接:https://pmc.ncbi.nlm.nih.gov/articles/PMC9897745/
Abstract

PURPOSE

Being on dialysis is a traumatic situation particularly during adolescence. Therefore, adolescents must have self-care support according to their special needs. The goal of this study was to describe the adolescents´ self-care practices when they are on dialysis. This paper reports only the adolescents´ selfcare practices based on the health care team guidelines but adjusted to their beliefs and habits.

METHODS

The methodology of the study was interpretive phenomenology. In-depth interviews were conducted with 15 adolescents; Smith´s IPA procedure was used for data analysis.

RESULTS

Being on dialysis meant to the adolescents living in a different and broken world. Self-care practices included: 1) coexisting with the dialysis slavery or being attached to a machine day or night, 2) struggling with the maddening thirst experience, 3) Deciding what, when and how much food to eat, 4) taking care of an alien that helps to survive, 5) taking the medicines when feeling in need of them.

CONCLUSION

The adolescents tried to care for themselves adjusting their care activities to the health team´s recommendations. However, they also adjusted those practices to their beliefs and habits, which allows them to live with dialysis in a less traumatic way.

摘要

目的

接受透析治疗是一种极具创伤性的情况,尤其是在青少年时期。因此,青少年必须根据其特殊需求获得自我护理支持。本研究的目的是描述青少年在接受透析治疗时的自我护理实践。本文仅报告了根据医疗保健团队指南但根据青少年的信仰和习惯进行调整的青少年自我护理实践。

方法

本研究的方法是解释性现象学。对 15 名青少年进行了深入访谈;使用史密斯的 IPA 程序进行数据分析。

结果

接受透析治疗对生活在不同和破碎世界中的青少年来说意味着什么。自我护理实践包括:1)与透析奴役共存或日夜依附于机器,2)与令人发狂的口渴体验作斗争,3)决定吃什么、何时吃和吃多少,4)照顾帮助生存的外来物,5)在感觉需要时服用药物。

结论

青少年试图通过调整他们的护理活动来照顾自己,以符合医疗团队的建议。然而,他们也根据自己的信仰和习惯调整了这些实践,这使他们能够以较少创伤的方式接受透析治疗。