The experiences of family carers supporting adults diagnosed with Non-Epileptic Attack Disorder (NEAD)

Non-epileptic Attack Disorder (NEAD) is the most commonly diagnosed functional neurological disorder worldwide. It is characterised by episodes which outwardly resemble epileptic seizures but have no discernible organic origin. Psychological therapy is the recommended treatment for NEAD. Those with the diagnosis, however, can be reluctant to engage with psychological therapy, believing seizures have an organic cause. Family carers have been found to be more accepting of the role of psychological factors in NEAD but have received little research attention to date.
Paper one is a literature review. It aimed to provide an updated synthesis and critical appraisal of research evaluating the impact of psychological interventions on seizure frequency and/ or Quality of Life (QoL) in adults diagnosed with NEAD. Eleven studies were identified for inclusion; all measured seizure frequency and seven also measured QoL. All studies, except those which evaluated psychoeducational interventions, found improvements in QoL and reductions in seizure frequency post- intervention. Although results are promising in suggesting a range of psychological approaches may be of benefit to those diagnosed with NEAD, firm conclusions cannot be drawn because of the considerable variability in study quality and design.
Paper two is an empirical paper which sought to explore the experiences of people caring for an adult family member diagnosed with NEAD. Eight family carers (four mothers and four spouses) participated in semi-structured Skype interviews. Three superordinate themes and ten subordinate themes were developed from interview data using Interpretative Phenomenological Analysis. Subordinate themes related to the personal impact of caring, navigating the reactions of others, and the importance of having an explanatory framework for seizures. Collaborative relationships with professionals, and the provision of information which led to carer understanding of seizures was described to facilitate change in caring approach and carer wellbeing.
Paper three is an executive summary of paper two, produced as an accessible document to share the rationale, aim, method, findings and implications of the empirical paper with those who participated. This document was developed in consultation with a family carer for somebody with NEAD.