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

Abstract

Background Nested within a large, multicenter randomized 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 cognitive behavioral therapy (CBT) and another component of the RCT, Standardized Medical Care (SMC) and their perceptions of and reflections on seizure management and change. Methods A qualitative study using semistructured interviews was conducted with 30 participants in an RCT (the COgnitive behavioral therapy vs standardized 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 (TFA). 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.

Cognitive–behavioural therapy compared with standardised medical care for adults with dissociative non-epileptic seizures: the CODES RCT

“…Although we cannot evaluate which component(s) of the CBT intervention offered particular benefit, our DS-specific CBT approach did include seizure control techniques, which were generally viewed positively by patients and therapists. 135,137 In a related manner, raw data suggest that the SMC-alone arm experienced a reduction in DS frequency at a later follow-up point than the CBT + SMC arm. It is not clear what led to this apparently later improvement in the SMC-alone arm and whether or not this could be attributed to discussion (but not practice) of distraction techniques during SMC sessions or whether direction to self-help websites containing descriptions of potential seizure control approaches may have resulted in the use of techniques to attempt to reduce DSs, but at a slower rate than in the CBT + SMC arm.…”

“…Within these themes, we identified subthemes where relevant (Table 24). We have expanded on some of these findings elsewhere 135,137,152 and noted that within the psychiatrist interviews in particular there was a consistent degree of agreement between respondents on the majority of topics. In the themes in the following sections we have reflected where divergent beliefs emerged.…”

“…From recognising the different experiences of the different participant groups within the trial, the interview schedules for each participant group were developed iteratively through discussion by members of the CODES research team. 135,137,152 These members of the team, who were not involved in conducting the interviews, provided both clinical expertise, in terms of the topics covered, and methodological guidance. With respect to the patient participants, the topics were designed to explore their experience of receiving the diagnosis, the impact of DSs on their life, the experience of the study treatment(s) that they received and their thoughts about participating in the study.…”

“…(see Chapter 3), although this will not necessarily reflect the range and impact of different histories of abuse that may have been present in this population. We know from our qualitative work 137 that some patients were apprehensive about being allocated to the CBT + SMC intervention arm (see also Chapter 5). CBT therapists were not able to undertake an assessment of individuals' suitability OVERALL DISCUSSION AND CONCLUSIONS NIHR Journals Library www.journalslibrary.nihr.ac.uk for a CBT intervention prior to them starting therapy.…”

“…We have documented aspects of this work elsewhere. 135,137,152,153 There is very little research exploring the experiences of HCPs working with patients with DSs. Existing quantitative research indicates that there is a gap in the knowledge among medical professionals who regularly encounter the condition.…”