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

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from around the world-told by children and adolescents with FND, their parents, and health professionals-portray an outdated culture of care characterized by iatrogenic stigma, erosion of empathy and compassion within the clinician-patient relationship, and a lack of understanding of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 After a brief exploration of the outdated culture, we share our counterstories: how we and our colleagues have worked, and continue to work, to create an FND-informed culture in the health systems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.

Fig. 1

The visual metaphor used in the explanation to the child. ©Kasia Kozlowska 2017 (for other metaphors see Kozlowska and colleagues, 2020) .

Fig. 2

This figure represents the multidisciplinary team. A physician, clinicians from psychological services, and staff from the child’s school are included on every team. A physical therapist, occupational therapist, speech therapist, and other allied health professionals (e.g., art, music, and recreational therapists) join the team as required. ©Kasia Kozlowska 2021.