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青少年哮喘患者自我管理及症状报告背后的认知与经历

Perceptions and experiences underlying self-management and reporting of symptoms in teens with asthma.

作者信息

Mammen Jennifer R, Rhee Hyekyun, Norton Sally A, Butz Arlene M

机构信息

a University of Rochester School of Nursing , Rochester , NY , USA.

b Johns Hopkins University, School of Medicine , Baltimore , MD , USA.

出版信息

J Asthma. 2017 Mar;54(2):143-152. doi: 10.1080/02770903.2016.1201835. Epub 2016 Jun 23.

Abstract

BACKGROUND

Teens often have inadequate asthma self-management and control. However, little is known of their perceptions of or rationales for self-management behaviors.

OBJECTIVES

To explore how teens self-manage asthma, including experiences, perceptions, responses to and reporting of symptoms.

METHODS

A case-based, qualitative-descriptive design was used. Data were collected from minority and non-minority teens with controlled and uncontrolled asthma and their respective parents (N = 28). There were four data-collection points, including: (1) a primary teen interview; (2) parent interview; (3) 2-week self-management voice-diary; and (4) follow-up teen interview, incorporating symptom-response card-sorting to map symptoms and associated self-management responses. Seventy data sources were included in the analysis.

RESULTS

Teens thought of their asthma symptoms as normal or unusual relative to their personal baseline symptom pattern; Those with uncontrolled asthma normalized higher levels of asthma symptoms than their counterparts with controlled asthma. Second, teens' decisions to treat symptoms of asthma with rescue medication were based on perceived benefits, burdens and accessibility of treatment balanced against perceived normalcy of symptoms. Teens with uncontrolled asthma had substantially higher treatment thresholds and delayed responses to symptoms compared to controlled peers. Third, teens never reported perceived normal symptoms of asthma to parents or providers, who were thus only aware of unusual or visible/audible symptoms.

CONCLUSIONS

Teen's perceptions of symptoms and understanding of what is normal is the basis for self-management decisions. Improving self-management will likely entail modifying perceptions of symptoms and benefits/burdens of treatment to achieve healthier self-management patterns.

摘要

背景

青少年往往缺乏足够的哮喘自我管理和控制能力。然而,对于他们对自我管理行为的看法或理由却知之甚少。

目的

探讨青少年如何自我管理哮喘,包括经历、看法、对症状的反应及报告。

方法

采用基于案例的定性描述性设计。从患有控制良好和控制不佳哮喘的少数族裔和非少数族裔青少年及其各自父母中收集数据(N = 28)。有四个数据收集点,包括:(1)青少年初次访谈;(2)父母访谈;(3)为期2周的自我管理语音日记;(4)青少年随访访谈,采用症状反应卡片分类来梳理症状及相关的自我管理反应。分析纳入了70个数据源。

结果

青少年根据其个人基线症状模式将哮喘症状视为正常或异常;哮喘控制不佳的青少年比哮喘控制良好的青少年将更高水平的哮喘症状视为正常。其次,青少年决定使用急救药物治疗哮喘症状是基于对治疗的感知益处、负担和可及性与对症状正常性的感知之间的权衡。与哮喘控制良好的同龄人相比,哮喘控制不佳的青少年治疗阈值显著更高,对症状的反应延迟。第三,青少年从未向父母或医疗服务提供者报告过他们认为正常的哮喘症状,因此父母和医疗服务提供者只了解异常或可见/可闻的症状。

结论

青少年对症状的认知以及对正常情况的理解是自我管理决策的基础。改善自我管理可能需要改变对症状的认知以及对治疗益处/负担的认知,以实现更健康的自我管理模式。

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