Decision making and support available to individuals considering and undertaking electroconvulsive therapy (ECT): a qualitative, consumer-led study

BACKGROUND: Electroconvulsive therapy (ECT) is one of the most controversial treatments in psychiatry. This controversy and diverse and often strongly held opinions can make decision making processes around ECT more complex. METHOD: This consumer-led project explored the experiences of individuals who had received ECT in terms of the information they received, their experience of ECT and suggestions for ways that decision making processes and experiences of ECT can be improved. Interviews were conducted by consumer researchers who had also received ECT and transcripts were analysed using constant comparative techniques. RESULTS: Seventeen individuals participated. Four overarching categories were identified from participant interviews: Information matters; Preparation and decisions before ECT; Experience of ECT; and Suggestions for improvement. Most participants suggested that more information was required and that this information should be made available more regularly to support decision making. Additional suggestions included greater involvement of family and friends (including having a family member or friend present during the ECT procedure), opportunities to gain information from individuals who had received ECT and more support for managing memory and cognitive side effects. CONCLUSION: This study provides valuable consumer-provided insights and recommendations for psychiatrists and mental health clinicians working within ECT clinics and with consumers considering or preparing for ECT. ELECTRONIC SUPPLEMENTARY MATERIAL: The online version of this article (10.1186/s12888-018-1813-9) contains supplementary material, which is available to authorized users.