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

Autor: Knoop I; Health Psychology Section, Institute of Psychiatry, Psychology and Neuroscience, King's College London, London, UK., Gu S; Health Psychology Section, Institute of Psychiatry, Psychology and Neuroscience, King's College London, London, UK., Fareghzadeh S; Neuroscience Section, Institute of Psychiatry, Psychology and Neuroscience, King's College London, London, UK., Jones ASK; Health Psychology Section, Institute of Psychiatry, Psychology and Neuroscience, King's College London, London, UK., Gall N; Cardiology Department, King's College Hospital, London, UK., Moss-Morris R; Health Psychology Section, Institute of Psychiatry, Psychology and Neuroscience, King's College London, London, UK.
Jazyk: angličtina
Zdroj: British journal of health psychology [Br J Health Psychol] 2024 May; Vol. 29 (2), pp. 297-316. Date of Electronic Publication: 2023 Oct 16.
DOI: 10.1111/bjhp.12700
Abstrakt: 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.
(© 2023 The Authors. British Journal of Health Psychology published by John Wiley & Sons Ltd on behalf of British Psychological Society.)
Databáze: MEDLINE
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