TY - JOUR
T1 - Changing the culture of care for children and adolescents with functional neurological disorder
AU - Kozlowska, Kasia
AU - Sawchuk, Tyson
AU - Waugh, Jeff L.
AU - Helgeland, Helene
AU - Baker, Janet
AU - Scher, Stephen
AU - Fobian, Aaron D.
N1 - Funding Information:
The authors would like to acknowledge Blanche Savage for her contribution to Text box 3 and Gretel Butler, Helen Dawson, and Nicola Gray for their ideas and enthusiasm when the ideas for this paper were taking shape. We also thank Maryllor De for her assistance with Figure 2.
Publisher Copyright:
© 2021 The Author(s)
PY - 2021/1
Y1 - 2021/1
N2 - 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from around the world—told by children and adolescents with FND, their parents, and health professionals—portray an outdated culture of care characterized by iatrogenic stigma, erosion of empathy and compassion within the clinician-patient relationship, and a lack of understanding of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 After a brief exploration of the outdated culture, we share our counterstories: how we and our colleagues have worked, and continue to work, to create an FND-informed culture in the health systems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.
AB - 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from around the world—told by children and adolescents with FND, their parents, and health professionals—portray an outdated culture of care characterized by iatrogenic stigma, erosion of empathy and compassion within the clinician-patient relationship, and a lack of understanding of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.
KW - Children and adolescents
KW - Clinical ethics
KW - Cultural change
KW - Functional neurological disorder (FND)
KW - Functional seizures
KW - Stigma
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U2 - 10.1016/j.ebr.2021.100486
DO - 10.1016/j.ebr.2021.100486
M3 - Article
C2 - 34761194
AN - SCOPUS:85115300060
SN - 2213-3232
VL - 16
JO - Epilepsy and Behavior Reports
JF - Epilepsy and Behavior Reports
M1 - 100486
ER -