Changing the culture of care for children and adolescents with functional neurological disorder

Kasia Kozlowska; Tyson Sawchuk; Jeff L Waugh; Helene Helgeland; Janet Baker; Stephen Scher; Aaron D Fobian

doi:10.1016/j.ebr.2021.100486

Changing the culture of care for children and adolescents with functional neurological disorder

Epilepsy Behav Rep. 2021 Sep 23:16:100486. doi: 10.1016/j.ebr.2021.100486. eCollection 2021.

Authors

Kasia Kozlowska^{1

2

3}, Tyson Sawchuk^{4

5

6}, Jeff L Waugh^{7

8}, Helene Helgeland⁹, Janet Baker^{10

11}, Stephen Scher^{2

12}, Aaron D Fobian¹³

Affiliations

¹ Department of Psychological Medicine, The Children's Hospital at Westmead, Westmead, NSW, Australia.
² University of Sydney Medical School, Sydney, NSW, Australia.
³ Westmead Institute for Medical Research, Westmead, NSW, Australia.
⁴ University of Calgary, Cumming School of Medicine, Department of Pediatrics, AB, Canada.
⁵ Alberta Children's Hospital Research Institute, Calgary, AB, Canada.
⁶ Alberta Children's Hospital, Calgary, AB, Canada.
⁷ Division of Child Neurology, Department of Pediatrics, University of Texas Southwestern, Dallas, TX, USA.
⁸ Division of Neurology and Neurotherapeutics, University of Texas Southwestern, Dallas, TX, USA.
⁹ Department of Child and Adolescent Mental Health in Hospitals, Oslo University Hospital, Oslo, Norway.
¹⁰ Speech Pathology, Flinders University, Adelaide, SA, Australia.
¹¹ University of Technology Sydney, Sydney, NSW, Australia.
¹² Department of Psychiatry, Harvard Medical School and McLean Hospital, Belmont, MA, USA.
¹³ Department of Psychiatry and Behavioral Neurobiology, University of Alabama at Birmingham (UAB), Birmingham, AL, USA.

Abstract

As members of a multidisciplinary team of professionals who treat children and adolescents with functional neurological (conversion) disorder (FND), we highlight the pressing need to develop an FND-informed culture of care that takes into account recent advances in our understanding of this group of patients. Stories of clinical encounters in health care settings from around the world-told by children and adolescents with FND, their parents, and health professionals-portray an outdated culture of care characterized by iatrogenic stigma, erosion of empathy and compassion within the clinician-patient relationship, and a lack of understanding of FND and its complex neurobiology. After a brief exploration of the outdated culture, we share our counterstories: how we and our colleagues have worked, and continue to work, to create an FND-informed culture in the health systems where we practice. We discuss the therapeutic use of child-friendly language. We also discuss a range of structural, educational, and process interventions that can be used to promote FND-informed beliefs and attitudes, FND-informed clinician-patient encounters, and FND-informed referral processes, treatment pathways, and therapeutic interventions.

Keywords: Children and adolescents; Clinical ethics; Cultural change; Functional neurological disorder (FND); Functional seizures; Stigma.