The perspectives of former recipients and experts on stigmatization related to electroconvulsive therapy in Denmark: A focus group study

Abstract

WHAT IS KNOWN ON THE SUBJECT?: Electroconvulsive therapy (ECT) has existed worldwide for nearly 80 years. ECT is a fast-working and potentially life-saving treatment, but it is considered controversial. Although frequently mentioned, stigmatization in relation to ECT has not been systematically explored so far. WHAT THIS PAPER ADDS TO EXISTING KNOWLEDGE?: This paper provides new insight into both recipient and expert perspectives on ECT. It identifies several issues of stigmatization related to ECT and suggests that full recovery following ECT might be jeopardized due to both stigmatization and self-stigmatization. The study suggests that most of the stigmatizing behaviors can be ascribed to (a lack of) available knowledge of and experience with ECT. WHAT ARE THE IMPLICATIONS FOR PRACTICE?: Being aware of and listening to the needs of former ECT-recipients seems essential to increase their treatment options and support care as well as a will to prioritize this patient group. For example, by addressing the potential stigma issues in follow-up groups and helping to distribute sober, factual information about ECT in society. Providing written information and psychoeducation for patients and relatives before, during, and after ECT, in addition to supporting active use of diaries, might be valuable remedies for helping patients feel adequately informed and able to accept the pros and cons of ECT during and after treatment period. ABSTRACT: Introduction Electroconvulsive therapy (ECT) has existed worldwide for nearly 80 years. Although fast-working and potentially life-saving treatment, ECT is regarded as a strongly controversial treatment and stigmatization is frequently mentioned in relation to it. However, no systematic research in this area has taken place so far. Aim The aim of this qualitative study was to explore the experiences and attitudes of former recipients of ECT and of experts professionally involved with ECT to identify potential stigmatization. Method Two focus groups, one comprising four recipients of ECT and the other seven professional experts, were conducted. Data from each focus group were analyzed separately using a framework-analysis. Results The analysis yielded three major themes for the first focus group interview: ambivalent attitudes, discrediting and exclusion, and survival strategies and three major themes for the second focus group interview: dramatic depictions of ECT, an overlooked and rare treatment, and anti-stigmatization strategies. Discussion and implications for practice Stigmatizing attitudes and behaviors in relation to ECT are closely related to one's personal and factual knowledge, and there is a great need for multi-facetted approaches if social acceptance and recognition are to be achieved. This study provides new knowledge on a scarcely examined area while also introducing suitable methods for anti-stigmatization and empowerment.

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

“…Study participants also highlighted a lack of sufficient information provision in and outside the clinical setting. This is concerning, considering that participants have reported the clinic as their main source of information, and scarce or biased information as coming from other sources or society [ 34 , 35 ].…”

Risk Assessment of Electroconvulsive Therapy in Clinical Routine: A 3-Year Analysis of Life-Threatening Events in More Than 3,000 Treatment Sessions

“…The stigmatizing attitudes and behaviors concerning ECT are closely related to one‘s personal and factual knowledge ( Kring et al, 2018 ). Accurate information and learning by participating in EKTs were proven to increase knowledge and improve attitudes toward ECT significantly in physicians, nurses, patients, and relatives ( Aoki et al, 2016 ; Li et al, 2016 ; Alexander et al, 2020a , b ).…”

Mental Health Nurse experiences of delivering care to severely depressed adults receiving electroconvulsive therapy

“…In many studies, ECT has proved more tolerable than classical antidepressants when taking side effects into consideration (Payne & Prudic, 2009), and many positive patient accounts of ECT exist (Knight et al., 2017; Maguire et al., 2016 ) . Despite this, ECT remains one of the most controversial and potentially misunderstood treatments available (Kring et al., 2018; Maguire et al., 2016). A lot of this controversy rests in the unresolved questions relating to the mechanisms of ECT and the associated side effects (Donahue, 2000; Sackeim, 2014).…”

“…A lot of this controversy rests in the unresolved questions relating to the mechanisms of ECT and the associated side effects (Donahue, 2000; Sackeim, 2014). The early history of coercion and unmodified practices do nothing to quell the mistrust that surrounds the procedure (Kring et al., 2018). In one qualitative study exploring the decision‐making towards ECT in older adults, stigma was identified as a major hurdle in electing to ECT (Amazon et al., 2008).…”