Long-Term Adverse Effects After Electroconvulsive Therapy (ECT): A Narrative Analysis Exploring People’s Experiences, Meaning-Making, and Coping

Abstract

Approximately 2500 people receive electroconvulsive therapy (ECT) annually in the United Kingdom; however, there is growing evidence of long-term adverse effects. Few studies have focused on people’s experience of ECT, particularly over the long term. The experience of ECT is known to be complex, requiring qualitative exploration. Therefore, this study aimed to explore the long-term adverse experiences of ECT, including psychological impacts, meaning-making, and coping. Narrative analysis considered thematic, structural, and performative elements of seven people’s stories. Themes were explored across the timeline of participants’ experiences. Before ECT, participants felt misinformed regarding ECT and misunderstood by healthcare professionals. They noticed immediate changes in their cognition, memory, and mood after ECT. Returning home was important in participants’ discovery of differences. Long-term impacts were loss (of ability, memory, humanity, and connection), the realization that ECT had been damaging, and understanding ECT to have caused brain damage. The extensive nature of loss experienced by participants was comparable to the concept of ambiguous loss. They experienced a lack of follow-up care and denial of their experiences, which could contribute to psychological iatrogenic harm. Participants coped with adverse experiences by using prompts and strategies and connecting with others. Further research is needed into the adverse long-term effects of ECT, especially considering cognitive effects, memory loss, and how these contribute to a changed sense of self. Service development is urgently required, especially for ECT follow-up care.