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A meta-ethnographic synthesis of the experiences of stigma amongst people with functional neurological disorder

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Pages 1-12 | Received 11 Mar 2022, Accepted 02 Dec 2022, Published online: 15 Dec 2022

References

  • Stone J, Burton C, Carson A. Recognising and explaining functional neurological disorder. BMJ. 2020;371:m3745.
  • Carson A, Lehn A. Chapter 5 – epidemiology. In: Hallett M, Stone J, Carson A, editors. Handbook of clinical neurology. Amsterdam (Netherlands): Elsevier; 2016. p. 47–60.
  • Stone J, Carson A, Duncan R, et al. Who is referred to neurology clinics?—The diagnoses made in 3781 new patients. Clin Neurol Neurosurg. 2010;112(9):747–751.
  • Rawlings GH, Brown I, Reuber M. Deconstructing stigma in psychogenic nonepileptic seizures: an exploratory study. Epilepsy Behav. 2017;74:167–172.
  • Rawlings GH, Reuber M. What patients say about living with psychogenic nonepileptic seizures: a systematic synthesis of qualitative studies. Seizure. 2016;41:100–111.
  • O'Connell N, Nicholson TR, Wessely S, et al. Characteristics of patients with motor functional neurological disorder in a large UK mental health service: a case–control study. Psychol Med. 2020;50(3):446–455.
  • Espay AJ, Aybek S, Carson A, et al. Current concepts in diagnosis and treatment of functional neurological disorders. JAMA Neurol. 2018;75(9):1132–1141.
  • Voon V, Brezing C, Gallea C, et al. Emotional stimuli and motor conversion disorder. Brain. 2010;133(Pt 5):1526–1536.
  • van der Kruijs SJM, Bodde NMG, Vaessen MJ, et al. Functional connectivity of dissociation in patients with psychogenic non-epileptic seizures. J Neurol Neurosurg Psychiatry. 2012;83(3):239–247.
  • Carson A, Ludwig L, Welch K. Psychologic theories in functional neurologic disorders. Handb Clin Neurol. 2016;139:105–120.
  • Ludwig L, Pasman JA, Nicholson T, et al. Stressful life events and maltreatment in conversion (functional neurological) disorder: systematic review and meta-analysis of case-control studies. Lancet Psychiatry. 2018;5(4):307–320.
  • Edwards MJ, Adams RA, Brown H, et al. A bayesian account of ‘hysteria’. Brain. 2012;135(Pt 11):3495–3512.
  • Brown RJ, Reuber M. Towards an integrative theory of psychogenic non-epileptic seizures (PNES). Clin Psychol Rev. 2016;47:55–70.
  • MacGillivray L, Lidstone SC. The biopsychosocial formulation for functional movement disorder, in functional movement disorder. Cham (Switzerland): Springer; 2022. p. 27–37.
  • Pick S, Anderson DG, Asadi-Pooya AA, et al. Outcome measurement in functional neurological disorder: a systematic review and recommendations. J Neurol Neurosurg Psychiatry. 2020;91(6):638–649.
  • MacDuffie KE, Grubbs L, Best T, et al. Stigma and functional neurological disorder: a research agenda targeting the clinical encounter. CNS Spectr. 2021;26(6):587–592.
  • Goffman E. Stigma and social identity. In: Understanding deviance: connecting classical and contemporary perspectives. Vol. 256. New York (NY): Routledge; 1963. p. 265.
  • Link BG, Phelan JC. Stigma and its public health implications. Lancet. 2006;367(9509):528–529.
  • FNDHope. FNDHope Stigma Study; 2020 [cited 2021 Feb 14]. Available from: https://fndhope.org/fnd-hope-research/
  • Robson C, Myers L, Pretorius C, et al. Health related quality of life of people with non-epileptic seizures: the role of socio-demographic characteristics and stigma. Seizure. 2018;55:93–99.
  • Barnett C, Davis R, Mitchell C, et al. The vicious cycle of functional neurological disorders: a synthesis of healthcare professionals’ views on working with patients with functional neurological disorder. Disabil Rehabil. 2022;44(10):1802–1811.
  • McMillan KK, Pugh MJ, Hamid H, et al. Providers’ perspectives on treating psychogenic nonepileptic seizures: frustration and hope. Epilepsy Behav. 2014;37:276–281.
  • Todres L, Galvin KT, Holloway I. The humanization of healthcare: a value framework for qualitative research. Int J Qual Stud Health Well-Being. 2009;4(2):68–77.
  • Seers K. Qualitative systematic reviews: their importance for our understanding of research relevant to pain. Br J Pain. 2015;9(1):36–40.
  • Thomas J, Harden A. Methods for the thematic synthesis of qualitative research in systematic reviews. BMC Med Res Methodol. 2008;8(1):45–10.
  • Noblit GW, Hare RD. Meta-ethnography: synthesizing qualitative studies. Vol. 11. London (England): Sage; 1988.
  • Tyerman E, Eccles FJR, Gray V. The experiences of parenting a child with an acquired brain injury: a meta-synthesis of the qualitative literature. Brain Inj. 2017;31(12):1553–1563.
  • Cullingham T, Kirkby A, Sellwood W, et al. Avoidance in nonepileptic attack disorder: a systematic review and meta-analyses. Epilepsy Behav. 2019;95:100–111.
  • Loewenberger A, Davies K, Agrawal N, et al. What do patients prefer their functional seizures to be called, and what are their experiences of diagnosis? – A mixed methods investigation. Epilepsy Behav. 2021;117:107817.
  • Duggleby W, Holtslander L, Kylma J, et al. Metasynthesis of the hope experience of family caregivers of persons with chronic illness. Qual Health Res. 2010;20(2):148–158.
  • Karterud HN, Haavet OR, Risør MB. Social participation in young people with nonepileptic seizures (NES): a qualitative study of managing legitimacy in everyday life. Epilepsy Behav. 2016;57(Pt A):23–28.
  • Dosanjh M, Alty J, Martin C, et al. What is it like to live with a functional movement disorder? An interpretative phenomenological analysis of illness experiences from symptom onset to post‐diagnosis. Br J Health Psychol. 2021;26(2):325–342.
  • Karterud HN, Knizek BL, Nakken KO. Changing the diagnosis from epilepsy to PNES: patients’ experiences and understanding of their new diagnosis. Seizure. 2010;19(1):40–46.
  • Karterud HN, Risør MB, Haavet OR. The impact of conveying the diagnosis when using a biopsychosocial approach: a qualitative study among adolescents and young adults with NES (non-epileptic seizures). Seizure. 2015;24:107–113.
  • McWilliams A, Reilly C, McFarlane FA, et al. Nonepileptic seizures in the pediatric population: a qualitative study of patient and family experiences. Epilepsy Behav. 2016;59:128–136.
  • Moyon RS, Thomas B, Girimaji SC. Subjective experiences of dissociative and conversion disorders among adolescents in India. Int J Soc Psychiatry. 2022;68(7):1507–1515.
  • Nielsen G, Buszewicz M, Edwards MJ, et al. A qualitative study of the experiences and perceptions of patients with functional motor disorder. Disabil Rehabil. 2020;42(14):2043–2048.
  • Pretorius C, Sparrow M. Life after being diagnosed with psychogenic non-epileptic seizures (PNES): a South African perspective. Seizure. 2015;30:32–41.
  • Rawlings GH, Brown I, Stone B, et al. Written accounts of living with psychogenic nonepileptic seizures: a thematic analysis. Seizure. 2017;50:83–91.
  • Rawlings GH, Brown I, Reuber M. Narrative analysis of written accounts about living with epileptic or psychogenic nonepileptic seizures. Seizure. 2018;62:59–65.
  • Robson C, Lian OS. “Blaming, shaming, humiliation”: stigmatising medical interactions among people with non-epileptic seizures. Wellcome Open Res. 2017;2:55.
  • Sarudiansky M, Lanzillotti AI, Areco Pico MM, et al. What patients think about psychogenic nonepileptic seizures in Buenos Aires, Argentina: a qualitative approach. Seizure. 2017;51:14–21.
  • Tanner AL, von Gaudecker JR, Buelow JM, et al. “It’s hard!”: adolescents’ experience attending school with psychogenic nonepileptic seizures. Epilepsy Behav. 2022;132:108724.
  • Thompson R, Isaac CL, Rowse G, et al. What is it like to receive a diagnosis of nonepileptic seizures? Epilepsy Behav. 2009;14(3):508–515.
  • Wyatt C, Laraway A, Weatherhead S. The experience of adjusting to a diagnosis of non-epileptic attack disorder (NEAD) and the subsequent process of psychological therapy. Seizure. 2014;23(9):799–807.
  • Scambler G, Hopkins A. Being epileptic: coming to terms with stigma. Sociol Health Illness. 1986;8(1):26–43.
  • Szaflarski M. Social determinants of health in epilepsy. Epilepsy Behav. 2014;41:283–289.
  • Stone J, Carson A, Hallett M. Explanation as treatment for functional neurologic disorders. Handb Clin Neurol. 2016;139:543–553.
  • Schibalski JV, Müller M, Ajdacic-Gross V, et al. Stigma-related stress, shame and avoidant coping reactions among members of the general population with elevated symptom levels. Compr Psychiatry. 2017;74:224–230.
  • Cariello AN, Tyler CM, Perrin PB, et al. Influence of social support on the relation between stigma and mental health in individuals with burn injuries. Stigma Health. 2021;6(2):209–215.
  • Earnshaw VA, Lang SM, Lippitt M, et al. HIV stigma and physical health symptoms: do social support, adaptive coping, and/or identity centrality act as resilience resources? AIDS Behav. 2015;19(1):41–49.
  • Brown BJ, Baker S. Responsible citizens: individuals, health and policy under neoliberalism. London: Anthem Press; 2012.
  • Marshall M. Mariana Valverde, diseases of the will: alcohol and the dilemmas of freedom. Cambridge: Cambridge University Press, 1998. Soc Hist Alcohol Rev. 1999;38–39:63–68.
  • Docherty M, Thornicroft G. Specialist mental health services in England in 2014: overview of funding, access and levels of care. Int J Ment Health Syst. 2015;9(1):1–8.
  • Sowińska A, Czachowski S. Patients’ experiences of living with medically unexplained symptoms (MUS): a qualitative study. BMC Fam Pract. 2018;19(1):1–9.
  • Looper KJ, Kirmayer LJ. Perceived stigma in functional somatic syndromes and comparable medical conditions. J Psychosom Res. 2004;57(4):373–378.
  • Taft TH, Keefer L, Leonhard C, et al. Impact of perceived stigma on inflammatory bowel disease patient outcomes. Inflamm Bowel Dis. 2009;15(8):1224–1232. (8):
  • Medina M, Giambarberi L, Lazarow SS, et al. Using patient-centered clinical neuroscience to deliver the diagnosis of functional neurological disorder (FND): results from an innovative educational workshop. Acad Psychiatry. 2021;45(2):185–189.
  • National Institute for Clinical Guidance (NICE). Suspected neurological conditions: recognition and referral; 2021.
  • Stangor C, Crandall CS. Threat and the social construction of stigma; 2000.
  • Brown RJ, Reuber M. Psychological and psychiatric aspects of psychogenic non-epileptic seizures (PNES): a systematic review. Clin Psychol Rev. 2016;45:157–182.