What patients say about living with psychogenic nonepileptic seizures: A systematic synthesis of qualitative studies

Abstract

Article available under the terms of the CC-BY-NC-ND licence (https://creativecommons.org/licenses/by-nc-nd/4.0/) eprints@whiterose.ac.uk https://eprints.whiterose.ac.uk/ Reuse Unless indicated otherwise, fulltext items are protected by copyright with all rights reserved. The copyright exception in section 29 of the Copyright, Designs and Patents Act 1988 allows the making of a single copy solely for the purpose of non-commercial research or private study within the limits of fair dealing. The publisher or other rights-holder may allow further reproduction and re-use of this version -refer to the White Rose Research Online record for this item. Where records identify the publisher as the copyright holder, users can verify any specific terms of use on the publisher's website. TakedownIf you consider content in White Rose Research Online to be in breach of UK law, please notify us by emailing eprints@whiterose.ac.uk including the URL of the record and the reason for the withdrawal request. AbstractPurpose: This qualitative study aimed at examining the subjective experiences of patients during the complicated and often prolonged diagnostic process of psychogenic non-epileptic seizures (PNES).Methods: Thematic analyses were used to explore the semi-structured interviews that were conducted with ten individuals who have been diagnosed with PNES.Results: Six main themes, namely inexpert healthcare providers, limited medical insurance and loss of independence were identified as barriers, while social support, comprehensive medical insurance and knowledgeable healthcare providers were identified as facilitators through the process of thematic analysis. Conclusions:The patients' perspectives revealed that an earlier diagnosis of PNES is essential to address the loss of independence and limit inappropriate and potentially harmful treatment as well as the costly burden of this condition on both the patient and the healthcare system. It was evident in this study that healthcare providers play an essential role in the subjective experiences of these individuals during the diagnostic process. The implementation of continuous education programmes for healthcare providers in particular could contribute positively to the diagnostic process of PNES for patients. Methods: Thematic analyses were used to explore the semi-structured interviews that were conducted with ten individuals who have been diagnosed with PNES.Results: Six main themes, namely inexpert healthcare providers, limited medical insurance and loss of independence were identified as barriers, while social support, comprehensive medical insurance and knowledgeable healthcare providers were identified as facilitators through the process of thematic analysis. Conclusions:The patients' perspectives revealed that an earlier diagnosis of PNES is essential to address the loss of independence and limit inappropriate and potentially harmful treatment as well as the costly burden of this condition on both the patient and the healthcare system. It was evident in this study that ...

Understanding psychogenic nonepileptic seizures—Phenomenology, semiology and the Integrative Cognitive Model

“…Other studies have also demonstrated that PNES are more likely to feel physical than [42,43], and qualitative research has demonstrated that patients often find accounts of PNES as a response to stress or other psychosocial triggers unconvincing, even though many (but by no means all) report past or current stressful events. [44,45].…”

Health care practitioners’ perceptions of psychogenic nonepileptic seizures: A systematic review of qualitative and quantitative studies

“…In 2016, we conducted a systematic synthesis of 21 qualitative studies investigating patients’ subjective experience of living with PNES . Among the key themes that emerged were difficult experiences patients had had with health care practitioners (HCPs), often causing considerable distress and persistent rumination.…”

Written Accounts of Living With Epilepsy or Psychogenic Nonepileptic Seizures: A Thematic Comparison

“…To date, qualitative research examining PNES and epilepsy has predominantly relied on research interviews or the audio-and video-recording of actual clinic conversations for data collection ( Rawlings & Reuber, 2016). Using various methodological and analytical approaches are likely to produce different perspectives on a particular problem (Farmer, Robinson, Elliott, & Eyles, 2006).…”