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Long-Term Adverse Effects

Following ECT, there is a possibility of permanent adverse effects including memory and cognitive impairment (Robertson & Pryor, 2006). Very little is known about the neurobiological underpinnings of these effects (Nobler & Sackeim, 2008). Furthermore, the Royal College of Psychiatry has described the routine clinical tests used to monitor the cognitive effects of ECT as neither valid nor reliable nor repeatable (Waite & Eaton, 2013). González-Pando et al. (2021) suggest that research into the long-term effects of ECT is lacking and that adverse effects imply a profound disturbance of lived experiences. Iatrogenic harm, the infliction of harm through medical interventions, is a known possible outcome of ECT (Dubey, 2017). Hailey et al. (2015) conducted a questionnaire of ECT patients in England and Wales, and almost 20% of respondents reported experiencing severe and enduring memory loss. In their audit of ECT in England, Read et al. (2021) were unable to obtain any National Health Service (NHS) data on efficacy or adverse effects beyond the end of ECT treatment, despite the known possibility of harm. The long-term adverse effects of ECT lack monitoring and are under-researched.

Lived Experience

There is a small amount of qualitative research exploring people’s accounts of their ECT experience. This research generally focuses on the short time periods leading up to, during, or following ECT treatments (Ejaredar & Hagen, 2014). Even fewer studies explore long-term impacts (Wells et al., 2021). People’s accounts of ECT are mixed, with different factors, such as feeling comfortable and trusting in staff, contributing to more positive accounts, whereas more negative accounts include experiencing ECT as frightening and illogical (Knight et al., 2017). These studies have emphasized the need for further inquiry (Coman & Bondevik, 2023; Rose et al., 2004), which utilizes qualitative research methods, thus enabling exploration of the complexity of experience (Rose et al., 2003).

Wells et al. (2022) used qualitative methodology to propose a framework that outlines the key factors involved in how people experience ECT and its long-term impacts. They found that people’s experience of ECT varied greatly and was influenced by key factors such as decision-making experiences and post-ECT clinical support. Furthermore, the long-term impacts of ECT could be split into its direct impacts on a person’s cognition and emotional experience, and how these impacts affect people’s daily activities, relationships, and ongoing healthcare. Finally, they found that people described developing multiple strategies to cope with the long-term negative impacts that ECT had on their lives. Wells et al. (2022) add to previous research describing the emotional impacts of ECT (Johnstone, 1999; Koopowitz et al., 2003; van Daalen-Smith, 2011). Although providing an important theoretical framework mapping the long-term experiences of ECT, Wells et al. (2022) were limited in their exploration of the psychological effects, including meaning-making.

The adverse psychological experience of ECT has been the primary focus of just one empirical study, which found that ECT can carry deeply symbolic meanings (Johnstone, 1999). Furthermore, Koopowitz et al. (2003) concluded that to address the psychological consequences of ECT, further research needs to explore the perception of memory loss and how this impacts the sense of self following ECT. Therefore, to build upon the work of Wells et al. (2022), there is a need for research utilizing qualitative methodology that explores the long-term impacts of adverse effects of ECT to include an in-depth exploration of psychological effects and meaning-making.

Narrative Research

This study utilized a narrative approach to explore how people organize and make sense of their experiences and memories through storytelling (Bruner, 1991). Narratives can be seen as a human strategy for processing and coming to terms with change over time (Herman, 2007). The use of narrative methodologies can highlight how individuals view themselves and the world and how they make meanings from their experiences (Labov & Waletzky, 1967). Other aspects of storytelling, such as story structure and performance, including coherence, are also examined through narrative analysis (McAdams & McLean, 2013). Narrative coherence refers to the extent to which a story makes sense to the listener and is thus able to convey the content and meaning of the described events (Vanaken et al., 2021). Therefore, narrative analysis is a salient methodology for exploring the complexity of long-term adverse experiences of ECT.

Researcher Position

Narrative analysis acknowledges that researchers cannot directly access participants’ experiences; therefore, every stage of the research process requires representational decisions (Riessman, 1993). In acknowledging the level of interpretation and influence of the researcher, it is important to consider my position here. (Author ES) My interest in ECT has been influenced by my role as an NHS trainee clinical psychologist and a prior job role working with people who have experienced ECT. I hold a critical view of the biomedical assumptions underpinning ECT; I also recognize that some people report it to be beneficial. To clarify my thoughts and assumptions about ECT and to monitor how my position impacted my interpretation, I completed a presuppositional interview (Barrett-Roger et al., 2023) and maintained a reflective journal (Ortlipp, 2008). I also used supervision and peer supervision to enhance reflexivity.

Consultation

To ensure that the research was both meaningful and sensitive to participants, two people with lived experience of long-term effects of ECT were consulted. Consultees contributed to the development of the recruitment strategy, the use of timelines, research prompts, and the structure of a follow-up interview.

Recruitment

Participants were recruited through independent ECT researchers who distributed the research flyer to online mental health advocacy groups and websites, and an online ECT support group. Ten people expressed an interest in participating, one person chose to withdraw prior to giving consent, and two people were excluded due to not receiving ECT in the United Kingdom. Therefore, seven people were recruited. Following common narrative analysis practices (Frost, 2021) and to be comparable to other narrative studies of ECT experiences (Ejaredar & Hagen, 2014), the sample size was kept small to allow for in-depth analysis of rich data.

Inclusion Criteria

Adults (aged over 18 years) who considered themselves to be experiencing at least one adverse effect of ECT were recruited. Participants had to have received ECT treatment in the United Kingdom, not to be currently undergoing ECT, and to have received their last ECT treatment a minimum of 6 months and a maximum of 20 years prior to the first research interview. Participants confirmed that they were not currently experiencing a mental health crisis and that they felt able to cope with any distress that may arise from discussing their experiences. Not meeting these criteria resulted in exclusion from the study.

Participants

Table 1 presents basic information about the sample characteristics. All participants identified as White: English, Welsh, Scottish, Northern Irish, or British. All participants received bilateral ECT and reported that they had a diagnosis of depression; for some, this was part of their primary diagnosis (five), whilst for others this was included within a list of diagnoses that they had received (two). One participant received ECT involuntarily whilst detained under the Mental Health (Care and Treatment) Act (Scotland) (2003). Another participant received some ECT whilst detained under the Mental Health Act (1983). Due to vague medical notes and an absence of memory, this participant is not sure whether they consented to all ECT sessions. The other five received ECT as voluntary patients.

Ethics

This study received full ethical approval from the University of Plymouth Faculty of Health Research Ethics and Integrity Committee (Project ID 3939). Participants responded to an advert containing details about the research and were subsequently sent additional information about the study. Prior to enrollment in the study, written consent was obtained by the lead researcher. Confidentiality, anonymity, right to withdraw, and possible risks of participating were outlined before the narrative interview. Participants were offered a £15 voucher as a recompense for their time; not all accepted this and instead asked that it be donated to charity. Debrief information containing researcher details, a reminder of the research aims, and details for support organizations were distributed prior to the narrative interview commencing. Follow-up interviews also offered some space for debriefing. To ensure anonymity, all names used in this study are pseudonyms.

Procedure

Data was collected across two interviews: a narrative interview (Reissman, 2008) and a follow-up interview, which took place approximately a month apart. The narrative interview was the primary data collection method. Each interview began by restating the research aims and creating a basic timeline of the participant’s experience with ECT. The following narrative question was then asked: “I would like you to tell me about your experiences of ECT and following. Please take as much time as you need.” Following this question, the researcher used prompts to explore, expand upon, and understand participants’ stories.

Although optional, every participant took part in the follow-up interview. These interviews started with a summary of the key story themes from the participant’s first interview. Participants were invited to elaborate on, clarify, or correct any themes described and to add additional information or reflections. The changes to narratives following second interviews were limited, with only minor amendments or clarifications being made. Although this process will enhance analysis, narratives will continue to be impacted by researcher bias.

Five interviews took place on a video calling platform and two took place via telephone according to participant preference. All were audio recorded. Narrative interviews lasted between 54 and 102 minutes, and follow-up interviews were 22–84 minutes long.

Transcription and Analysis

Interviews were transcribed verbatim by the lead researcher; names were changed, and identifiable details were removed to ensure anonymity. Transcripts were subject to repeated readings to enable familiarization with the data. Sections of transcripts were analyzed jointly during individual supervision and group peer supervision to strengthen the validity and increase rigor of analysis (Birt et al., 2016). The use of a second interview served in part as member checking, enhancing the rigor of findings.

Narrative analysis followed Riessman’s (2008) framework utilizing three narrative approaches: thematic analysis (what was said), structural analysis (how the story was told), and performative analysis (how the talk was interactively produced and performed) to strengthen and triangulate analysis.

Part 1: Individual Stories of ECT

Part 2: Shared Themes Across Participants’ Accounts

Figure 1 outlines key story themes organized chronologically across common stages of participants’ accounts of ECT. In total, there are nine key story themes. The themes “The Procedure Went Well but You’ve Killed the Patient” and “My Life Is One of Post-It Notes” each contains three sub-themes, enabling unique aspects to be explored.

“I Was Like a Zombie” (Charlotte)

Participants’ ability to remember their experiences following ECT varied, but all struggled to recall the time immediately surrounding treatment. All participants described coming round from ECT, feeling confused and disoriented: “I woke up I didn’t know who I was, I didn’t know where I was, I didn’t know what the heck had happened” (Flora). Transient headaches and muscle stiffness immediately after ECT were frequently described by participants.

Most participants reported memory loss whilst they were receiving ECT: “The memory loss was absolutely profound. My family, they were really shocked” (Harriet). For some, this memory loss felt different to the persistent memory loss they would go on to experience: “There is this sort of mist, haze in your mind when you’re having ECT that affects your memory. […] I was like a zombie” (Charlotte).

“My Mood Seemed to Lift” (Stella)

Most participants generally reported a change in mood immediately following or between ECT sessions; however, this change was not always perceived as positive or lasting. Two participants described significant changes in their psychological state whilst receiving ECT, becoming aggressive or angry: “During ECT I got very aggressive […] I was never like that when I was not getting ECT” (Flora). Four participants described an initial and short-lived improvement or changed mood: “So you know, I got a glimpse of blue skies and then it just, you know, the storm clouds gathered, and I was back where I was” (Charlotte). For Paula, it was hard to say whether the change in mood was a positive experience because “with raised mood comes anxieties, past traumas,” which were intrusive and distressing, and therefore, the shift did not feel like an improvement in psychological well-being.

“Life in the Real World” (Flora)

For all participants, returning home from hospital following ECT and trying to re-establish their lives confronted them with the realization that cognitive abilities were impacted, short-term memory had significantly reduced in capacity, and autobiographical memories had disappeared. Short-term memory difficulties often became apparent due to changes in functional abilities.

The shorter-term stuff came more after I got out because, of course, if you’re getting constant ECT over eight years, you’re not really living a normal adult life in the real world, you know, you don’t need to use your brain in that way, but when I started you know cooking, I couldn’t follow a recipe, I forget about the pan on the stove. (Flora)

For some, returning to reading and studying made difficulties apparent: “I’d pick up a book expecting to read it and I could physically sound out the words, but I couldn’t hold a sentence, […] the shelf where you put the sentences on, where you assemble them wasn’t there anymore” (Harriet).

Furthermore, it took participants time to realize that difficulties were present and persistent.

A lot of the effects of it have come to light a lot longer, they are more clear and they weren’t obvious at the time, like it’s as the time has gone on, and also, I’ve noticed that it seems to be like they’re going to be long term. It’s not, it’s not improved. (Stella)

The loss of autobiographical memories was often realized when participants encountered situations that should prompt memories or familiarity: “I didn’t realize I was engaged […] until I found some photographs” (Rose).

Due to the suggestion in the consent process that changes would be temporary, some participants waited for their abilities to return. This led to participants blaming themselves or struggling to understand the persistence of their difficulties: “I expected everything to improve and get better because I’d always been told that whatever side effects there were, would be short-term […] feeling like I’d failed because things weren’t improving” (Paula).

“The Procedure Went Well, but You’ve Killed the Patient” (Rose)

In all accounts, loss from the effects or impacts of ECT was significant. This was apparent in several distinct ways captured across the sub-themes: Loss of Ability, Loss of Self, and Loss of Humanity and Connection. Overall, the experience of loss was profound and had a huge emotional impact on all participants, as described by Stella: “The experience of ECT has broken part of my heart and robbed a large chunk of my mental functioning and ability to form and enjoy memories, the very thing that makes us human.”

“It All Just Went Clunk” (Harriet)

Whilst some participants returned from hospital understanding that their memory loss and cognitive changes were due to ECT, others did not make this link, causing confusion: “Just incredibly confusing, I haven’t been able to make any sense of it, it’s it just made no sense” (Harriet). The absence of specific follow-up care meant that participants were not supported to understand the adverse effects of ECT, leaving participants feeling isolated and helpless: “No one does the six-week check-up or the six year or the sixty year […] and for me that’s shocking” (Paula).

Where participants did manage to access appointments, they often felt that professionals dismissed their experiences. Therefore, the emotional impacts of ECT were rarely discussed, leaving participants feeling silenced: “They just didn’t listen!” (Charlotte). Professionals often attributed post-ECT difficulties to the effects of taking psychiatric medication, experiences of depression, or other diagnostic explanations. However, participants did not feel that these explanations were valid reflections of their experiences: “That’s the psychiatrist switch, from saying it’s depression to it was PTSD and that was his blanket explanation for everything” (Harriet).

For Stella and Harriet, professionals saw memory loss as a separate problem to mental health, meaning that they received little support from psychiatric care. They felt abandoned and betrayed: “I don’t really now fit completely into that box if you like, in psychiatry but I also can’t fit into anywhere else. […] you’re just kind of left you know” (Stella). All of which contributed to participants generally avoiding involvement with mental health services, especially psychiatrists.

By chance, three participants, Harriet, Paula, and Dean, heard a radio program discussing adverse experiences of ECT which helped them to comprehend their new reality.

This mind-blowing radio programme […] describing so, such a similar experience to mine and it all, it all just went clunk, and and then I understood why I couldn’t, why I couldn’t read, and I understood that that reading is a memory problem, and that memory is an ECT problem. (Harriet)

“It’s Brain Damaged Us” (Rose)

In seeking to understand post-ECT changes, most participants arrived at the meaning that ECT had been traumatizing and had caused brain damage. Furthermore, in considering their brain to have been damaged, participants worried about how future age-related brain degeneration would affect them: “I am closer on the scale to mild cognitive impairment […] than I am to being a typical person and that worries me because I know about neurodegeneration with age” (Charlotte). Three participants had accessed brain scans or neuropsychological tests, which provided evidence that their brains and capacities had measurably changed. These participants were able to discuss cognitive changes and memory loss with more certainty than others.

I have a diagnosis of traumatic brain injury, acquired brain injury in my medical notes, and you know, scans that prove that it’s, that it’s there and a report that says that the injury is consistent with a history of ECT. (Harriet)

“My Life Is One of Post-It Notes” (Charlotte)

All participants had significantly adapted their lives to cope with their adverse experiences. The different ways that participants adapted and coped are captured across the sub-themes: New Ways of Being, Prompts and Strategies, and Sharing Experiences.

Structural Elements

Two parts of Labov and Waletzky’s (1967) five-part structural analysis, abstract (a summary of the events) and complicating action (the actual events of the narrative), were generally present across narratives. However, the other three parts, orientation (information about the setting of the story), evaluation (the reason the story was told), and resolution (the conclusion), were lacking. Narratives were generally sparse in orienting details, contained frequent gaps, missed evaluation of events, and moved between substories without resolution.

Narrative coherence was explored by utilizing Baerger and McAdams (1999) framework. Narratives typically lacked coherence across all criteria. Most narratives became disoriented, with participants losing track of what they were talking about due to not remembering what they had already covered or what they were trying to convey. Three participants required considerable support to structure their stories temporally. As participants recounted their experiences of ECT, there was a noticeable absence of affect; the emotional significance of events was generally elicited through specific prompting later in the narrative interview. Furthermore, across all accounts, the integration of stories of ECT within the larger life story was lacking, especially the integration of ECT with life prior to it. Participants’ stories in this study lacked coherence, integration, and resolution. Lower story coherence has been linked to lower psychological well-being (Baerger & McAdams, 1999).

Narrative meaning-making is understood to emerge over time, where the ongoing processing and recall of autobiographical memory is central (Fivush et al., 2017). It is, therefore, unsurprising, due to the autobiographical memory difficulties reported, that narratives in this study lacked meaning-making. As time since ECT has progressed, if memories can be accessed, participants will have had additional opportunities to create narratives and meaning and make sense of events. Some participants were more clearly able to articulate meanings made about ECT than others; this appeared to vary with the extent of memory loss reported. Regardless, discussion of meaning-making was seldom spontaneously considered within narratives and needed specific prompting.

Performative Elements

Participants appeared aware of their difficulty constructing a coherent narrative, discussing concerns about their narrative’s believability and credibility. Throughout interviews, all participants frequently read excerpts from, or offered the researcher access to, medical notes. This offered a way for participants to support, reinforce, and verify their narratives.

Strengths, Limitations, and Recommendations for Future Research

This study provided an in-depth, rich, and clinically applicable understanding of the long-term adverse experiences of ECT. The use of narrative methodology is a key strength of this research, enabling and supporting the exploration of participants’ experiences with ECT over time. Additionally, the findings of this research have highlighted the need for more longitudinal research that considers the long-term and adverse impacts of ECT. Enquiry is needed into the specific areas of cognitive and memory loss and how these difficulties can impact sense of self and identity. Further research should explore how to support people to understand and cope with adverse experiences of ECT, including neuropsychological testing and considering the iatrogenic nature of harm from ECT.

The sample was homogenous across reasons for and circumstances leading to ECT, ethnicity, and education level. Participants in this study had a high level of education and intellect. On the one hand, this can be considered a strength, as despite the aforementioned storytelling difficulties, participants retained a level of skillful articulation from which to explain their experiences. However, this may mean that the narratives described may not be representative of many people receiving ECT. Future research is needed into the experiences of a much more diverse sample, especially the experiences of minoritized people.

The strategy of recruiting through ECT researchers, who shared the research flyer with online mental health and ECT support groups, can be considered a limitation. Although no participant identified as being involved with a campaign group or being an activist, the exposure to others’ experiences of ECT may have influenced participants’ appraisals of their own experiences. Furthermore, only participants with enough ability and financial resources to access online groups using technology were recruited. Therefore, those experiencing greater adverse effects of ECT or those living in poverty may have been inadvertently excluded.

Due to the focus on post-ECT experiences, this study did not explore participants’ full lifeline in depth. There is a high likelihood that those accessing mental health services will have experienced trauma (Kessler et al., 2010). Therefore, there may be additional impacts of prior life and childhood experiences, particularly traumatic, on the psychological and emotional effects of ECT not discussed in this study that require further exploration.

Clinical Implications

Findings from this study suggest that ECT can be a traumatic, psychologically and emotionally distressing experience with profound impacts on a person’s sense of self. Participants suggested that diagnoses and psychiatric drug treatment were not always helpful. It is important that people feel empowered to choose what is right for them within their care. It is essential that services offering ECT as a treatment ensure that people are provided with accurate consent information that outlines the true possibility of devastating and permanent side effects. Furthermore, services need to provide environments where participants feel free to consent rather than conform. There is undoubtedly a role for clinical psychologists in psychological formulation before ECT, ensuring the consent process is fully informed and offering neuropsychological testing and psychological support for post-ECT difficulties.

Findings suggest that service development is urgently needed to support people experiencing the adverse effects of ECT, particularly concerning specific long-lasting follow-up care. Negative experiences of ECT need to be recognized as a significant reality for some. Follow-up care requires those involved in the practice of ECT and professionals working in the wider mental health systems to be able to hear and accept a diversity of accounts regarding ECT. Therefore, it is fundamentally important that services create systems where people are safe, supported, and empowered to tell their stories of adverse experiences of ECT.