Iris Knoop, Stephanie Gu, Shamim Fareghzadeh, Annie S. K. Jones, Nicholas Gall, Rona Moss-Morris
{"title":"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。","authors":"Iris Knoop, Stephanie Gu, Shamim Fareghzadeh, Annie S. K. Jones, Nicholas Gall, Rona Moss-Morris","doi":"10.1111/bjhp.12700","DOIUrl":null,"url":null,"abstract":"<div>\n \n \n <section>\n \n <h3> Objectives</h3>\n \n <p>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.</p>\n </section>\n \n <section>\n \n <h3> Design</h3>\n \n <p>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.</p>\n </section>\n \n <section>\n \n <h3> Methods</h3>\n \n <p>Participants (<i>n</i> = 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.</p>\n </section>\n \n <section>\n \n <h3> Results</h3>\n \n <p>The analysis resulted in three overarching themes: <i>‘Seeking physiological coherence and validation’, ‘Individual persistence’,</i> and <i>‘Navigating the cumulative burden’. ‘Accessibility and disparities of health care’</i> 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.</p>\n </section>\n \n <section>\n \n <h3> Conclusions</h3>\n \n <p>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.</p>\n </section>\n </div>","PeriodicalId":48161,"journal":{"name":"British Journal of Health Psychology","volume":null,"pages":null},"PeriodicalIF":3.5000,"publicationDate":"2023-10-16","publicationTypes":"Journal Article","fieldsOfStudy":null,"isOpenAccess":false,"openAccessPdf":"https://onlinelibrary.wiley.com/doi/epdf/10.1111/bjhp.12700","citationCount":"0","resultStr":"{\"title\":\"Exploring the complexities of illness identity and symptom management in seeking a diagnostic label of postural orthostatic tachycardia syndrome (POTS): An inductive approach\",\"authors\":\"Iris Knoop, Stephanie Gu, Shamim Fareghzadeh, Annie S. K. Jones, Nicholas Gall, Rona Moss-Morris\",\"doi\":\"10.1111/bjhp.12700\",\"DOIUrl\":null,\"url\":null,\"abstract\":\"<div>\\n \\n \\n <section>\\n \\n <h3> Objectives</h3>\\n \\n <p>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.</p>\\n </section>\\n \\n <section>\\n \\n <h3> Design</h3>\\n \\n <p>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.</p>\\n </section>\\n \\n <section>\\n \\n <h3> Methods</h3>\\n \\n <p>Participants (<i>n</i> = 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.</p>\\n </section>\\n \\n <section>\\n \\n <h3> Results</h3>\\n \\n <p>The analysis resulted in three overarching themes: <i>‘Seeking physiological coherence and validation’, ‘Individual persistence’,</i> and <i>‘Navigating the cumulative burden’. ‘Accessibility and disparities of health care’</i> 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.</p>\\n </section>\\n \\n <section>\\n \\n <h3> Conclusions</h3>\\n \\n <p>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.</p>\\n </section>\\n </div>\",\"PeriodicalId\":48161,\"journal\":{\"name\":\"British Journal of Health Psychology\",\"volume\":null,\"pages\":null},\"PeriodicalIF\":3.5000,\"publicationDate\":\"2023-10-16\",\"publicationTypes\":\"Journal Article\",\"fieldsOfStudy\":null,\"isOpenAccess\":false,\"openAccessPdf\":\"https://onlinelibrary.wiley.com/doi/epdf/10.1111/bjhp.12700\",\"citationCount\":\"0\",\"resultStr\":null,\"platform\":\"Semanticscholar\",\"paperid\":null,\"PeriodicalName\":\"British Journal of Health Psychology\",\"FirstCategoryId\":\"102\",\"ListUrlMain\":\"https://onlinelibrary.wiley.com/doi/10.1111/bjhp.12700\",\"RegionNum\":2,\"RegionCategory\":\"心理学\",\"ArticlePicture\":[],\"TitleCN\":null,\"AbstractTextCN\":null,\"PMCID\":null,\"EPubDate\":\"\",\"PubModel\":\"\",\"JCR\":\"Q1\",\"JCRName\":\"PSYCHOLOGY, CLINICAL\",\"Score\":null,\"Total\":0}","platform":"Semanticscholar","paperid":null,"PeriodicalName":"British Journal of Health Psychology","FirstCategoryId":"102","ListUrlMain":"https://onlinelibrary.wiley.com/doi/10.1111/bjhp.12700","RegionNum":2,"RegionCategory":"心理学","ArticlePicture":[],"TitleCN":null,"AbstractTextCN":null,"PMCID":null,"EPubDate":"","PubModel":"","JCR":"Q1","JCRName":"PSYCHOLOGY, CLINICAL","Score":null,"Total":0}
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.
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.