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

PURPOSE: Functional neurological disorder (FND) causes many neurological symptoms and significant disability. It is often misunderstood by medical professionals and the public meaning stigma is regularly reported. The aim of this review was to synthesise the qualitative findings in the literature to develop a more in-depth understanding of how people with FND experience stigma to inform future interventions. METHOD: This review used a meta-ethnography approach. Five databases were searched (PsycINFO, Web of Science, CINAHL, MEDLINE, and EMBASE) in February 2021 and updated in July 2022 for qualitative papers in FND. Included papers were critically assessed using the critical appraisal skills programme (CASP) checklist. Data were analysed and synthesised utilising meta-ethnography. RESULTS AND CONCLUSION: Sixteen papers were included in the final synthesis. Four major themes emerged: stigmatized by delegitimization; stigmatized by social exclusion and rejection; coping with stigma; and stigma and identity. The results identified negative, stigmatizing attitudes towards people experiencing FND symptoms in a variety of contexts including healthcare and other social institutions. The effects of stigma led to further exclusion for participants and appeared to trigger coping styles that led to additional difficulty. Stigma is a key part of the illness experience of FND and needs to be addressed.

Functional neurological disorders can cause a significant degree of disability for those individuals who experience them.This experience appears to be compounded by stigma these people encounter as a result of their illness in their day-to-day lives as well as in their contact with institutions including education, workplaces, and healthcare.A potential strategy to reduce the impact of stigma is through raising awareness of the reality of this condition which may be achieved through education targeted towards healthcare providers.

Psychological inflexibility and somatization in nonepileptic attack disorder.

BACKGROUND: There is no clear understanding of what causes and maintains nonepileptic attack (NEA) disorder (NEAD), or which psychological therapies may be helpful. The relationships between variables of psychological inflexibility: experiential avoidance (EA), cognitive fusion (CF), mindfulness, and key outcome variables in NEAD: somatization, impact upon life, and NEA frequency were investigated. METHOD: Two hundred eighty-five individuals with NEAD completed validated measures online. Linear regression was used to explore which variables predicted somatization and impact upon life. Ordinal regression was used to explore variables of interest in regard to NEA frequency. RESULTS: Mindfulness, EA, CF, somatization, and impact upon life were all significantly correlated. Mindfulness uniquely predicted somatization when considered in a model with EA and CF. Higher levels of somatization increased the odds of experiencing more NEAs. Individuals who perceived NEAD as having a more significant impact upon their lives had more NEAs, more somatic complaints, and more EA. CONCLUSIONS: Higher levels of CF and EA appear to be related to lower levels of mindfulness. Lower levels of mindfulness predicted greater levels of somatization, and somatization predicted NEA frequency. Interventions that tackle avoidance and increase mindfulness, such as, acceptance and commitment therapy, may be beneficial for individuals with NEAD. Future directions for research are suggested as the results indicate more research is needed.

Avoidance in nonepileptic attack disorder: A systematic review and meta-analyses.

BACKGROUND: Avoidance is the active process of trying to escape from or not experience situations, places, thoughts, or feelings. This can be done through behavioral or cognitive strategies, or more broadly, a combination of both, utilized in an attempt to disengage from private experiences referred to as experiential avoidance (EA). Avoidance is considered important in the development and maintenance of nonepileptic attack disorder (NEAD). This review aimed to understand avoidance in NEAD and evaluate its role as a contributory factor. METHODS: Fourteen articles were identified by searching Cumulative Index to Nursing and Allied Health (CINAHL), MEDLINE Complete, PsycINFO, and EMBASE and were combined in a narrative synthesis. Six of these articles were included in a meta-analysis comparing levels of EA for individuals with NEAD and healthy controls (HC), and four were included in a meta-analysis comparing EA in NEAD to epilepsy comparisons (EC). CONCLUSIONS: Experiential avoidance appears to be a strategy that is used by a high proportion of the population with NEAD. The group with NEAD utilized significantly more avoidance compared with both the HC and EC. However, further research is needed to understand the extent and types of avoidance that are relevant.

Emotional dysregulation, alexithymia, and attachment in psychogenic nonepileptic seizures.

OBJECTIVES: Psychogenic nonepileptic seizures (PNESs) are poorly understood and difficult to treat. Research and theory suggest that problems with recognizing, acknowledging, and regulating emotional states (i.e., emotional dysregulation) may contribute to the development and maintenance of PNESs. However, there is a lack of well-controlled studies using dedicated measures of emotional regulation with patients with PNESs. The current study sought to address this gap. METHODS: Forty-three patients with PNESs and 24 with epilepsy completed a postal survey comprising measures of emotional dysregulation (Difficulties in Emotion Regulation Scale), alexithymia (Toronto Alexithymia Scale), attachment (Relationship Scales Questionnaire), and psychopathology (Generalized Anxiety Disorder-7; Patient Health Questionnaire-9; Somatoform Dissociation Questionnaire-20). Cluster analysis was used to identify possible subgroups of patients with PNESs characterized by distinct patterns of emotional dysregulation. RESULTS: Two clusters of patients with PNESs were identified. The first (n=11) was characterized by higher levels of psychopathology, somatization, alexithymia, and difficulties with most aspects of emotional regulation (including identifying, accepting, and describing feelings, accessing adaptive regulatory strategies, performing goal-directed behaviors, and controlling feelings and actions) compared with the group with epilepsy. The second (n=32) was characterized by relatively high somatization and depression scores but comparatively normal levels of alexithymia and emotional regulation. CONCLUSIONS: The findings suggest that patients with PNESs can be divided into at least two meaningful subgroups characterized by distinct psychological profiles, only one of which is characterized by significant problems with emotional dysregulation. Further research is needed to determine whether the relatively normal emotional dysregulation and high somatization scores of some patients with PNESs are due to emotional avoidance or more basic problems with perceptual and behavioral control.

Adult attachment style and childhood interpersonal trauma in non-epileptic attack disorder.

Non-epileptic attack disorder (NEAD) poses a significant clinical problem but is poorly understood. Attachment theory provides a framework for understanding the development and maintenance of NEAD and the contribution of childhood abuse and neglect to these processes. A cross-sectional design was used to study attachment style and early traumatic experiences in individuals with NEAD (N=17) compared to those with epilepsy (N=26). A significant difference in predominant attachment style between the two groups was found, with fearful attachment occurring more frequently in the NEAD group. Abuse and neglect were also significantly more common in the NEAD patients. Both early traumatic experiences and fearful attachment added significantly to the predictive power of a logistic regression equation after controlling for anxiety and dysthymia. The findings suggest a link between disturbed attachment and NEAD and have clinical implications for therapeutic intervention with this group.