The experience of trial participation, treatment approaches and perceptions of change among participants with dissociative seizures within the CODES randomized controlled trial: A qualitative study

Julie Read, Harriet Jordan, Iain Perdue, James Purnell, Joanna Murray, Trudie Chalder, Markus Reuber, Jon Stone, Laura H. Goldstein*

*Corresponding author for this work

Research output: Contribution to journalArticlepeer-review

11 Citations (Scopus)
127 Downloads (Pure)

Abstract

Background:
Nested within a large, multi-centre randomised controlled trial (RCT) for people with dissociative seizures (DS), the study used purposive sampling to explore participants’ experience of participating in an RCT, their experience of DS-specific CBT and another component of the RCT, Standardised Medical Care (SMC) and their perceptions of and reflections on seizure management and change.
Methods:
A qualitative study using semi-structured interviews was conducted with 30 participants in an RCT (the COgnitive behavioural therapy vs standardised medical care for adults with Dissociative non-Epileptic Seizures (CODES) Trial) investigating the effectiveness of two treatments for DS. Key themes and subthemes were identified using Thematic Framework Analysis.
Results:
Analysis yielded three overarching themes: taking part in a treatment trial - “the only thing out there”, the experience of treatment techniques that were perceived to help with seizure management and reflections on an “unpredictable recovery”.
Conclusions:
People with DS are amenable to participating in a psychotherapy RCT and described a largely positive experience. They also described the applicability of aspects of DS-specific CBT and SMC in the management of their DS, received within the confines of the CODES trial. Factors that appeared to account for the variability in response to treatment delivery included individual preferences for the nature of sessions, the nature of therapeutic relationships, readiness to discuss trauma, other aspects of emotional avoidance and whether therapy provided something new.
Original languageEnglish
Article number107230
Pages (from-to)1-9
JournalEpilepsy & Behavior
Volume111
Early online date5 Jul 2020
DOIs
Publication statusPublished - Oct 2020

Keywords

  • Change
  • Cognitive behavior therapy
  • Dissociative seizures
  • Qualitative
  • Seizure control

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