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

Article English OPEN
Rawlings, G.H. ; Reuber, M. (2016)
  • Publisher: Elsevier

PURPOSE: This is a narrative systematic synthesis of qualitative research investigating patients' accounts of living with psychogenic nonepileptic seizures (PNES). Qualitative methodologies allow patients to share lived experiences in their own words. The examination of patients' own accounts is likely to offer revealing insights into a poorly understood, heterogeneous disorder. METHODS: We identified 21 separate studies about PNES published after 1996 and based on analyses of patients' own words. Papers were synthesised inductively and deductively using an iterative approach. RESULTS: Five key themes emerged from the synthesis of studies capturing accounts from over 220 patients, reflecting experiences of seizure events, diagnosis, treatment and management, emotional events, and impact on daily life. Patients with PNES discussed the phenomenology of their seizures differently from those with epilepsy. PNES were experientially heterogeneous. Many patients shared a sense of uncertainty surrounding PNES, often resisting psychological explanations. Negative experiences with healthcare professionals were common. Patients seeking validation of their experiences often reported feeling ignored or doubted. Many reported past or current stressful events. Some demonstrated insight into their methods of emotional processing. PNES were described as a significant burden associated with financial and psychosocial losses. CONCLUSIONS: Qualitative studies have produced helpful insights into patients' experiences of living with PNES, but many patient groups (men, young people, elderly, non-Western patients) are underrepresented in studies carried out to date. Research capturing these patient groups and using new methods of data collection and qualitative analysis could help to deepen our understanding of this disorder.
  • References (26)
    26 references, page 1 of 3

    [1] [2] [3] [4] [5] [6] [7] [8] [9] Smith B. Closing the major gap in PNES research: Finding a home for a borderland disorder. Epilepsy Currents 2014;14(2):63-7. Retrieved from https://www.aesnet.org/sites/default/files/file_attach/epcu-14-2- 63%20Clnical%20Review%20Smith.pdf Dickinson P, Looper KJ. Psychogenic nonepileptic seizures: a current overview.

    Epilepsia 2012;53:1679 89.

    Benbadis S. Psychogenic Nonepileptic Seizures. Differential diagnosis of Epilepsy 2005;Section D(42):623-30.

    Pretorius C, Cronje G. People with Psychogenic non-epileptic seizures: A South African perspective. AJOD 2015;4(1):Art#176,7 pages. http://dx.doi.

    org/10.4102/ajod.v4i1.176 Thimm A, Bellon, M. The psychosocial effects of psychogenic non-epileptic seizures (PNES). Flinders University, Disability and Community Inclusion, School of Medicine.

    The Epilepsy Report 2011; 4 6. http://dx.doi.org/10.1007/s11357-010-9157-5.

    Benbadis SR. Errors in EEGs and the misdiagnosis of epilepsy: Importance, causes, consequences, and proposed remedies. Epilepsy Behav 2007;11(3):257-62.

    doi:10.1016/j.yebeh.2007.05.013 Cronje G, Pretorius C. The coping styles and health-related quality of life of South African patients with psychogenic nonepileptic seizures. Epilepsy Behav 2013;29;581- 4. doi:10.1016/j.yebeh.2013.09.045 Pretorius C, Sparrow M. Life after being diagnosed with Psychogenic Non-Epileptic Seizures (PNES): A South African perspective. Seizure 2015;30:32-41.

    doi:10.1016/j.seizure.2015.05.008 Baslet G, Dworetzky BA, Perez DL. Psychogenic Nonepileptic Seizures: A New Direction Clinical EEG and Neuroscience 2015;46(1):3.

    doi:10.1177/1550059414564521 nonepileptic seizures. Psychosom Med 2010;72:487-97. doi:10.1097/PSY.0b013e3181d96550

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