在寻求体位性直立性心动过速综合征(POTS)的诊断标签时,探索疾病识别和症状管理的复杂性:一种归纳方法。

IF 3.5 2区 心理学 Q1 PSYCHOLOGY, CLINICAL British Journal of Health Psychology Pub Date : 2023-10-16 DOI:10.1111/bjhp.12700
Iris Knoop, Stephanie Gu, Shamim Fareghzadeh, Annie S. K. Jones, Nicholas Gall, Rona Moss-Morris
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引用次数: 0

摘要

目的:体位性直立性心动过速综合征(POTS)是一种使自主神经系统衰弱且认识不足的疾病。本研究应用Leventhal的疾病表征常识模型来探索POTS的诊断过程,并了解其与具有常见合并症的鲜为人知的疾病的相关性。设计:使用归纳定性方法来探索患者在寻找诊断标签的过程中对症状进行解释和管理的过程,并在现有诊断或多发病的背景下调查疾病身份。方法:参与者(n = 29)是从一项更大的纵向研究中招募的,该研究对象是新转诊到专业POTS服务的人。半结构化访谈通过视频通话进行。三名研究人员使用反射主题分析和基础理论的元素对数据进行了编码和分析。结果:该分析产生了三个总体主题:“寻求生理连贯性和验证”、“个体持久性”和“驾驭累积负担”卫生保健的可及性和差异”被视为一个背景因素。参与者认为接受POTS诊断提供了合法性并增加了获得治疗的机会。总的来说,诊断过程的延误和缺乏明确的诊断对患者产生了负面影响,因为不确定性增加,缺乏关于如何管理症状的明确指导。研究结果还表明,在多发性疾病的背景下,将症状分配给标签有很大的复杂性。结论:参与者的故事强调了迫切需要更好地识别POTS,以便从症状检测的早期阶段就可以启动自我调节过程。
本文章由计算机程序翻译,如有差异,请以英文原文为准。

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Exploring the complexities of illness identity and symptom management in seeking a diagnostic label of postural orthostatic tachycardia syndrome (POTS): An inductive approach

Objectives

Postural orthostatic tachycardia syndrome (POTS) is a debilitating and under-recognized condition of the autonomic nervous system. This study applied Leventhal's Common-Sense Model of Illness Representations to explore the journey to a diagnosis of POTS and to understand its relevance to poorly understood conditions which have common comorbidities.

Design

An inductive qualitative approach was used to explore the processes by which patients formulate explanations and management of symptoms within the search for a diagnostic label and to investigate illness identity in the context of existing diagnoses or multimorbidity.

Methods

Participants (n = 29) for this nested qualitative study were recruited from a larger longitudinal study of people who had been newly referred to a specialist POTS service. Semi-structured interviews were conducted via video call. Three researchers coded and analysed data using Reflexive Thematic Analysis and elements of Grounded Theory.

Results

The analysis resulted in three overarching themes: ‘Seeking physiological coherence and validation’, ‘Individual persistence’, and ‘Navigating the cumulative burden’. ‘Accessibility and disparities of health care’ was noted as a contextual factor. Receiving a POTS diagnosis was regarded by participants as providing legitimacy and increased access to treatment. Overall, delays in the diagnostic journey and the lack of a clear diagnosis impacted negatively on patients through increased uncertainty and a lack of clear guidance on how to manage symptoms. Findings also suggested there were great complexities in assigning symptoms to labels in the context of multimorbidity.

Conclusions

Participants' stories highlighted the urgent need for better recognition of POTS so that the self-regulatory process can be initiated from the early stages of symptom detection.

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来源期刊
British Journal of Health Psychology
British Journal of Health Psychology PSYCHOLOGY, CLINICAL-
CiteScore
14.10
自引率
1.30%
发文量
58
期刊介绍: The focus of the British Journal of Health Psychology is to publish original research on various aspects of psychology that are related to health, health-related behavior, and illness throughout a person's life. The journal specifically seeks articles that are based on health psychology theory or discuss theoretical matters within the field.
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