Experiences of individuals with functional/dissociative seizures with healthcare professionals: A systematic review and thematic synthesis

Abstract

Objective

Research suggests people with functional/dissociative seizures (pwFDS) often experience challenging encounters with healthcare professionals (HCPs). PwFDS report communication problems, difficult relationships with HCPs and sub-standard care. However, no previous reviews have explored this issue from the perspective of pwFDS. Therefore, this systematic review aimed to explore pwFDS’ experiences of their encounters with HCPs.

Methods

Four databases (Scopus, PsycINFO, CINAHL and MEDLINE) were systematically searched for peer-reviewed qualitative studies in February 2024. Twenty studies published 2004–2023 with 270 pwFDS were included and analysed using thematic synthesis. The Critical Appraisal Skills Programme checklist for qualitative research was utilised to appraise the quality of included studies.

Results

The findings highlight a number of difficulties which pwFDS face in their encounters with HCPs. Three superordinate themes with five subthemes were developed: ‘clinician uncertainty feeds patient uncertainty’, ‘not fitting into the model of medical illness’, ‘stigma fuelling negative experiences with HCPs’. Positive encounters were mentioned but these were reported in the minority of instances.

Conclusions

Findings highlight the difficult experiences pwFDS face in their encounters with HCPs. PwFDS experience uncertainty about their condition due to poor knowledge and stigmatising beliefs about FDS. Difficult encounters with HCPs are frequently experienced, which may lead pwFDS to avoid accessing medical support.