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

Abstract

Highlights There is a pressing need to create a holistic and respectful culture of care for children with FND and their families. An outdated culture of care for children with FND lingers across many health systems. The outdated culture imposes iatrogenic stigma on children and families. Structural, educational, and process interventions can be used to promote change. Essential changes include adoption of FND-informed beliefs, attitudes, and referral/treatment processes by professionals.

Functional neurological disorders: an Australian interdisciplinary perspective

“…17 Equally, a dismissive approach to communicating the diagnosis can jeopardise patient confidence in the validity of their illness experience, leaving them feeling angry, ashamed and strongly rejecting discussion of the diagnosis and treatment plan. 18 In our own clinical practice, there is a strong emphasis on fostering optimism and developing a collaborative and individualised management plan with the patient's illness narrative at the centre.…”

One-year follow-up of treatment outcomes and patient opinions of Retraining and Control Therapy (ReACT) for pediatric functional seizures

“…Although ReACT appears to be a promising treatment for pediatric FS with an excellent short-term response, additional research is needed to confirm the benefits of ReACT are maintained for at least a year (similar to other treatment studies) [21] given the previous RCT only reported outcomes for 60-days after treatment [20] . Further, given the profound stigma experienced by patients with FND and the potential negative impact of their experiences with stigma on patient outcomes such as treatment efficacy and adherence [22] , [23] , it is necessary to evaluate children and parents’ opinions of ReACT to assess acceptability and continue to refine the intervention. Thus, the aim of the present study is to provide a longitudinal follow-up assessment of children’s FS frequency one year after initial completion of ReACT and evaluate children and parents’ perceptions of their experience in ReACT to determine treatment efficacy and acceptability.…”

Special issue on the intersection between functional seizures and other functional neurological disorders

“…Their case illustrates the common mistakes and misperceptions clinicians and caregivers may have about FNDs. Dr. Kozlowska and colleagues provide similar perspectives with focus on pediatric aspects of FND care [8] . These authors not only provide verbatim narratives from patients and clinicians, they also discuss in detail the specific aspects of those narratives that are incorrect and potentially harmful to patients and their therapeutic relationship with physicians.…”

“…They also discuss in detail the preferred treatment approaches to patients with FNDs and the differences between pediatric and adult FNDs. This article clearly articulates a framework for treatment approaches that may be more successful in pediatric FNDs and it discusses results of a recently completed randomized controlled trial of “retraining and control therapy (ReACT)” in children and adolescents in whom psychiatric comorbidities are less frequently observed than in adults [8] , [9] . This and another article in this special issue highlight the differences in etiologies, treatment targets, and therapeutic interventions between pediatric and adult FNDs [8] , [10] .…”

“…This article clearly articulates a framework for treatment approaches that may be more successful in pediatric FNDs and it discusses results of a recently completed randomized controlled trial of “retraining and control therapy (ReACT)” in children and adolescents in whom psychiatric comorbidities are less frequently observed than in adults [8] , [9] . This and another article in this special issue highlight the differences in etiologies, treatment targets, and therapeutic interventions between pediatric and adult FNDs [8] , [10] . Finally, Dr. Stager and colleagues provide needed data on the long-term outcome of ReACT for the treatment of pediatric and adolescent FS – a bottom-up, cognitive behaviorally based, mind–body intervention that targets novel mechanisms for pediatric FS including sense of control and catastrophic symptom expectations [11] , [12] .…”