Recipients’ experience with information provision for electroconvulsive therapy (ECT)

BACKGROUND: Despite improvements, studies continue to report unsatisfactory provision of information before, during and after electroconvulsive treatment (ECT). AIMS: The study explores participants’ experiences with information provision about ECT. METHODS: In-depth interviews with 21 participants (21– 65 year-old) were conducted. Thematic analysis resulted in identification of four themes: pre-treatment knowledge, experience of informed consent, the need for information depth and life after ECT. The study includes user involvement. RESULTS: Although some participants were satisfied with information provision, the majority experienced an education deficit throughout the treatment period. Their consent was based mostly on oral information, insufficient and unvaried information on official health websites and media. Further, patients reported a lack of follow-up services that can attend to (neuro) psychological concerns. CONCLUSIONS: Better access to updated factual and narrative information should support patient education and autonomy. Active use of diary writing, better follow-up and more varied representations of experience with ECT in media and health information sites are necessary to educate, improve consent processes and reduce stigma.