Living With Electroconvulsive Therapy—A Qualitative Study of the Subjective Experiences of Patients Having Continuation or Maintenance Electroconvulsive Therapy

Objective: To explore the subjective experience of patients receiving continuation/maintenance electroconvulsive therapy (C/M-ECT) for severe, recurrent mental illnesses, addressing a literature gap in this unique cohort whose perspective remains unexplored. Methods: An exploratory qualitative study was conducted on 10 voluntary adult patients (aged 32 to 66 y) from outpatient C/M-ECT services in Western Sydney Local Health District and St John of God Richmond Hospital, Sydney, Australia. Participants, primarily with major depressive episodes due to treatment-resistant unipolar depression or bipolar disorder, completed semistructured interviews (60 to 90 min) starting with an open-ended narrative prompt. Interviews were audio-recorded, transcribed, and analyzed thematically, with themes refined iteratively through consensus discussions. Results: Thematic analysis revealed 5 themes: clinical (C/M-ECT was seen as a life-saving last resort, stabilizing symptoms after failed treatments. Cognitive side effects were heterogeneous, ranging from minimal to pervasive, though mitigated by adaptive strategies. Ultimately, benefits were seen to outweigh drawbacks); access (logistical/financial barriers); staff (trust through long-term relationships and expertise); family (vital support amid ambivalence due to concerns of side effects); and fear/stigma (initial fears diminishing with experience, though stigma prompted selective disclosure). Conclusion: This qualitative study on voluntary patients of long-term ECT for depression universally described its life-changing value in keeping them well and out of hospitals for long periods. Even though subjective cognitive effects were frequently reported, they were viewed as adaptable and an acceptable trade-off. The study also highlighted concerns of barriers to access ECT and the presence of support, with concerns about the length of treatment/number of ECTs from family.