Abstract
Background: People with non-epileptic seizures (NES) describe challenging relationships with health professionals, and explain negative interactions as common and expected. Despite these difficulties, little is known about how people with NES experience difficult healthcare encounters. Methods: Using a thematic discourse analysis approach, we analysed the free-text survey responses of 135 people with NES and asked: what kind of challenges do people living with this condition encounter when interacting with health professionals, and how do they experience the consequences of difficult interactions? We explore their experiences by interpreting the latent meaning of participants' texts from a social-constructionist perspective on health and illness. Results: The overarching narrative depicts a fundamental breakdown in patient-provider relationships. According to our data, the negative experiences of study participants emerge from more than practitioners' lack of awareness of NES and access to information about the condition - to the extent that it is available. In examining the challenges people with NES encounter when interacting with health professionals, their main experiences centre on blame and humiliation. When exploring their experiences, theories of stigma serve as a useful theoretical framework. Conclusions: Normative judgements arising from psychogenic understandings of NES are stigmatising and restrict professional displays of respectful (patient-centred) care. Those with the condition depict being negatively stereotyped, illegitimated and held morally culpable by health professionals. Perceived to lack medical, moral and credible status, participants describe practitioners who treat them with disrespect, and some recount conduct that defies all ethical and professional obligations and standards. These encounters can have wide-ranging adverse consequences for patients: emotionally, physically, and for their future healthcare. The quality of healthcare interactions for people with NES requires urgent improvements. In addition to increased awareness of the condition, practitioners need to be conscious of making and acting on adverse moral appraisals when interacting with this patient group.
Highlights
Patient experience is recognised as a crucial dimension of health-care quality, and is shown to have important implications for patient safety, health outcomes, and resource use[1]
Normative judgements arising from psychogenic understandings of non-epileptic seizures (NES) are stigmatising and restrict professional displays of respectful care.Those with the condition depict being negatively stereotyped, illegitimated and held morally culpable by health professionals
Participants were advised that we use the term NES to describe diagnoses of psychogenic non-epileptic seizures (PNES), nonepileptic attack disorder (NEAD), and other diagnostic terms sometimes used to describe the condition and symptoms, such as, dissociative, conversion, functional, and pseudo seizures
Summary
Patient experience is recognised as a crucial dimension of health-care quality, and is shown to have important implications for patient safety, health outcomes, and resource use[1]. The condition is characterised as psychogenic and classified under the banner of somatoform, functional, and dissociation or conversion disorder - depending on the clinician and taxonomy consulted. In these hypothetical models, maladaptive psychological functioning (dysfunctional emotional and coping mechanisms) give rise to physical symptoms (seizures); which are involuntary and outside of the patients’ control[5]. People with non-epileptic seizures (NES) describe difficult and challenging relationships with health professionals, and explain negative interactions as common and expected. Despite these difficulties, little is known about how people with NES experience healthcare encounters
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