“It saved me”: A thematic analysis of experiences of psychological therapy following critical illness and intensive care

Abstract

Background:

ICU-survivors are likely to struggle with psychological wellbeing. Providing post-ICU therapeutic interventions is a relatively novel field and little is known about patients’ experiences.

Methods:

Thematic analysis was used to analyze semi-structured interviews with 20 ICU-survivors who had accessed psychological therapy following discharge from an ICU in the Southwest of Britain. Descriptive statistics were used to summarize data to provide service related contextual information.

Results:

Five themes emerged from the data: the impact of critical illness, value of therapy, accessing therapy, process of therapy and role of psychologist. Psychological therapy is viewed as an important part of recovery. Critical illness is a complex experience. Therapy supported sense-making, acceptance and moving forwards. Although therapy could be initially difficult, there were lasting positive effects. There were different challenges to and facilitators of accessing therapy and offering ongoing support provided reassurance. A safe therapeutic relationship and an ICU-specific service was important.

Conclusion:

Psychological therapy, alongside other rehabilitation interventions, can facilitate recovery. Considerations for local and wider service development are discussed.

Introduction

Recovering from critical illness can be complex. The estimated psychological morbidity for Intensive Care Unit (ICU) survivors is 55%: with approximately 20%–30% experiencing PTSD; 46% depression, and 44% anxiety.^{1 –3} Risk factors include psychiatric symptoms during admission, use of benzodiazepines, duration of sedation, frightening ICU experiences and delirium.^1,3,4 Delirium is a significant risk factor and research suggests around 50%–80% of ICU patients experience delirium

Despite the recommended need for critical care psychology^5,6 provision is patchy, with only 19% of UK ICUs having access to a psychologist. There is a growing interest in the provision of evidence-based critical care psychology interventions. Although guidelines indicate that psychological interventions are important in recovery post-ICU discharge,^5,6 it is a relatively novel field. Much literature to date has focused on inpatient interventions to prevent further psychological distress rather than models of outpatient intervention ⁷ and there is little exploring ICU survivors’ experiences of follow up psychotherapy. The service evaluation was approved by the Trust’s Audit, Assurance and Effectiveness Team to record critical care psychology’s outpatient activity and to explore patients’ experiences of psychological therapy as part of outpatient follow-up care from a 27-bed adult neurological and general ICU in the southwest of Britain.

Methods

Standard practice is to send screening questionnaires to survivors with an ICU admission of 4 days or more^6,8 at 3 months post-hospital discharge. The questionnaires include: Post-Traumatic Stress Syndrome 14-Questions Inventory (PTSS-14), a validated measure to screen for acute PTSD after ICU discharge (a score of 45 or more indicates clinically significant distress) ⁹ ; Generalized Anxiety Disorder-7 Questionnaire (GAD-7), ¹⁰ a seven-item, self-report, assessment tool validated for assessing anxiety disorders (a score of 8 or above indicates clinically significant symptoms); Patient Health Questionnaire (PHQ-9), ¹¹ a nine-item, self-report scale used for assessing depression (a score of 11 or above indicates clinically significant symptoms); and EQ-5D-5L, ¹² a five-item, self-report measure of health-related quality of life.

Screening questionnaires have been sent since 2014 and the data recorded. A psychologist joined the team in 2017 from which point patients whose scores indicated symptoms in the clinically significant range were offered a psychological assessment. An ICU multidisciplinary (MDT) follow-up clinic started in 2019 and an option to attend included with the screening questionnaires. All follow up clinic attendees are assessed by critical care psychology. Those whose score indicates clinically significant distress and do not opt to attend the clinic continue to be offered a psychological assessment. Patients can also be referred by hospital care teams, GPs and self-referral. Patients identified as experiencing ICU-related psychological distress are offered further assessment and evidenced based therapy including Cognitive Behavioral Therapy (CBT), Acceptance and Commitment Therapy (ACT), and predominately Eye Movement Desensitization and Reprocessing (EMDR) therapy.

The average number of screening questionnaires sent annually between 2014 and 2022 was 382 with an average response rate of 156 (41%). The number and percentage of returned questionnaires scoring for psychological distress was 61 of 156 (40%) and opting to attend the follow-up clinic was 69 of 156 (44%). The numbers of patients seen for follow up psychological assessment range from 37 (in 2018) to 130 (in 2022). This increase reflects the impact of starting the follow-up clinic and offering remote therapy. Across the three full years (2020–2022) since the start of the follow-up clinic 338 patients have been assessed for critical care related psychological distress, either in the clinic or by psychology alone, and of these 209 (62%) were offered psychological therapy. The number of therapy sessions per intervention ranged from 1 to 30 with a mean number of 6.3. In the same three full year period (2020–2022) 97 people were discharged by critical care psychology. Outcomes measured by questionnaires following discharge were: 34 of 97 (35%) clinically significant change (defined as scores dropping below clinical significance on at least one measure); 43 of 97 (44%) no post therapy measures collected; 18 of 97 (19%) scored below clinically significant distress at the start of therapy, therefore no post therapy measures were collected; and 2 of 97 (2% showed no significant change on post measures).

Participants for the qualitative interviews were recruited via opportunity sampling. A list was generated of patients who had received at least one therapy session as part of their follow up care between 2017 and 2020. The list was checked against hospital records and anyone who had died or was known to be in hospital was removed. The remainder were sent information sheets and a consent form. Patients were invited to a semi-structured interview (see Figure 1) about their lived experience of outpatient ICU-related psychological intervention.

Figure 1.

Semi structured interview schedule.

Interviews were conducted by four researchers not directly involved in participants’ care. Interviews were carried out remotely via video call or telephone, lasted 10–60 min, were audio-recorded, transcribed and pseudonymised. Interview data was analyzed using thematic analysis employing Braun and Clarke’s six step framework. ¹³ Data was read and re-read for familiarization, initial codes developed, including cross coding by different members of the research team and patterns established. These patterns were developed into themes, which were reviewed and defined into a final set of themes and sub-themes. Recruitment ended once data saturation occurred and no new themes emerged.

Results

About 20 patients took part. Participants were aged between 30 and 78, with an average age of 59. Participants had an ICU admission of 5–78 days, with an average of 16 days. The range of psychotherapy sessions undertaken by participants was 1–29; the average was 12. 15 participants had undertaken EMDR therapy and 5 CBT. About 10 attended therapy sessions in person and 10 remotely by phone (2) and online (8).

Five superordinate themes and 12 subthemes were identified (Table 1). Illustrative quotes are from the data, names are pseudonyms.

Table 1.

Themes and subthemes from analysis.

Themes	Subthemes with illustrative quotes.
Impact of critical incident and ICU	Emotional and psychological impact		Recovery is multifaceted
	“to say my life had been turned upside down is a chronic understatement [. . .] I can’t even think ‘well I’m in this state now because that happened’ - I can’t remember any of it” (Dot).“the flashbacks [. . .] they were just very unsettling, came at odd times and it just throws you,. . .at worst, for several days [. . .] I was active every day, and then to suddenly wake up in hospital to wake up and find out that I nearly died is a total and utter shock to the system and I lost confidence, a lot of confidence in just like, existing in a way” (Jill).“it took me by surprise the feeling, the overwhelmingness of it all, that emotional instability, how fragile everything was” (Ellen). (Ellen).		“[therapy] was another important aspect [. . .] it was something that was needed, but it solves a particular problem. It didn’t solve the other problems” (Paul).
			“the physios and that played a massive part in my recovery as well” (Linda).
			“seeing the consultant, really good because I got to see pictures of scans that I had no idea what had happened, and they were going through every bit of it” (Tina).
			“the biggest thing was, listening to what other people say, and then being able to kind of recognize actually, ‘yeah that’s how I’m feeling or that’s what that’s what I was experiencing’ so you don’t feel so isolated” (Jim).
Value of therapy	Important benefits	Making sense	Reconnecting, accepting, and moving forward
	“if I didn’t have it, I just don’t know where I’d be. I would be sat in the corner somewhere just crying” (Alison).“I thought it was very good. I recommend anyone who goes through the same thing to do it” (Bella).“I really feel for some of those people that come out of hospital and don’t have that support because I would have really struggled without it. And I can only imagine how they they’re struggling [. . .] so I think we’re very lucky to have this service” (Jim).	“you are able to put it all into context [. . .] understand why I was sad and why it made me feel the way it did” (Ellen).“It helped me realize what I was feeling from the accident, that nobody speaks about. You have an accident like that, major trauma, put in a coma, in hospital, in intensive care and nobody says to you ‘you were upstairs, do you understand what has gone on?’ And I was feeling a bag full of emotions from that and I didn’t know how to process it, but over those 12 months she helped me to process it and to see where all that came from” (Brian).	“I’ve moved on from constantly thinking about what I couldn’t do anymore [. . .] and hone in on the things that I still could do. I think the hardest thing I found to get to which [psychologist] has helped me with so very much is finding the core bits of me that are still there and how I can be that same person, but in a different way” (Joan).
			“acceptance was the biggest thing [. . .] before sepsis I was one person, after the sepsis, I was a very different person and lots of things have changed and it was about finding a way for me to accept some of those changes and be able to use them in a positive way as opposed to it eating me up which is what it was doing” (Jim).
Accessing therapy	Challenges and facilitators		Reassurance of ongoing support
	“they just assume everyone is online and that you’re competent with it. I mean, you know I just haven’t got it” (Gloria).“before I left one of the consultants saw me and said that he could refer me to a psychologist department but at the moment the list was manic with the demands on the service and I went away and thought “I’m fine, I’m here, I’m alive, I’m physically well, I’m going home”, but really it probably would have been better if I had just had that option at that point, rather than carrying it all [. . .] I felt that the NHS was spread so thin that you couldn’t ask for anything more than what I’d got” (Ellen).“fortunately somebody told me that it was an option” (Jill).“I was really taking anything to be quite honest. I was willing to take what was offered, you know, I just wanted to feel better” (Helen).		“you know there’s probably always gonna be things that crop up so just to be able to speak to someone whether it’s just a quick email or quick phone call just so you can speak to someone who understands, who can just say to you right that’s absolutely fine, and you know just help you” (Fiona).
			“one of my deliriums kicked in - I didn’t realize it was my anniversary and so I contacted [psychologist] again and then she kindly said ‘do you want some more?’ I said, oh, yes, please” (Steve).
Process of therapy	Expectations	Journey	Lasting effects
	“I was like oh my god, I’ve been offered therapy! I’m not going mad!” (Harry)	“as we went further on down the line, it became so much easier. To begin with, it was very, very hard. I couldn’t get very far with talking without turning into a pile of tears. As the weeks went by, as I got further and further in, it was incredible" (Alison).“I think all of us naturally are a bit cautious about things, new things, so that didn’t just go away, but after we’d spoken for 4 hours, you know effectively after 4 sessions, I kind of felt I was really into this and committed to it and I did feel an absolute commitment.” (Helen).	“I’ve really noticed that my processing of trauma and stuff is so much better, it’s definitely done something somewhere in there” (Tina)“I find using what [psychologist] taught me does help, do you know? Just go quiet, take myself off to somewhere I’d like to be [. . .] I’ve been through a bit of a stressful time recently so it is, you know, it helps to use it, and the breathing exercises [. . .] it helped me deal with the problems I was having” (Connie).“it’s something I can look back on, things that [psychologist] has said during the sessions, I can go back to when I’m having a down moment in my head and I’m thinking, go back to some things that she said and that helps too so, even ongoing it makes a difference" (Jill).
	“psychology, to some people, is still frightening” (Sam).
	“[psychologist explained] ‘the idea is that we’ll turn your thoughts and everything you’re thinking, will become, it’ll take the scariness away from the memory so you’ll still have the memories but they won’t incite any fear or anxiety and she said the idea is that we pop them in a box in your brain’ and to be honest, I mean I didn’t believe a word!” (Fiona).
	“I didn’t realize it would be as helpful as it was” (Ellen).
Role of psychologist	Qualities and relationship		ICU specific
	“I said stuff that I never told a stranger before, my friends and my family, sort of thing, she listened” (Miles).“I knew my husband had not spoke about it so he had his own issues [. . .] I didn’t want to burden him with all what was in my head [. . .] so [the therapist] was my key, really to making me feel, you know, a lot better with myself” (Linda).“she worked with me, I think that’s the best way of putting it, it wasn’t that I was [. . .] a sausage in a factory, I was, you know, I was a unique individual in a unique set of circumstances” (Ian).“it was a place I could go, you know, not be judged, say exactly how things were in effect. . . . in a safe environment” (Jim).“she was very gentle and understanding and listened also to what I experienced and then gave me some, understanding of what I’ve gone through [. . .] she was allowing me in a sense to dictate my own way forward, but she was providing the options and the tools and the explanations” (Paul).		“when you’re talking to somebody like [psychologist] they have an understanding of what you went through [. . .]when you come back to family and friends [. . .] it’s not truly registering with them as to how serious it really was [. . .] you’re poorly and next minute you’re home starting to get better [. . .] there’s so much more than that, which is a job to explain to somebody who doesn’t have that understanding” (Harry).
			“[the psychologist] saw me in ICU, which, you know, the fact that she understands the journey compared to somebody that perhaps doesn’t [. . .] it is real and it connected to your experience” (Ian).

The impact of critical illness

The significant and complex impact of critical illness was core to participants’ experiences and included both physical and psychological challenges. Although the physical challenges were anticipated, the emotional impact was often unexpected. Memory of what happened is often absent or fragmented: “it was such a big thing and the awful thing about it was that I don’t actually remember what happened”; and further complicated by delirium “some of the places that you visit in your head while you’re under, is difficult. They’re real places, but you’re not there.” ICU experiences and related psychological trauma symptoms could lead to a sense of loss and a changed sense of self, which at times felt overwhelming. Some participants voiced feeling alone in recovery. Due to the complex nature of critical illness, support and recovery was multifaceted. Psychological therapy was needed in tandem with other interventions. The MDT Clinic provided the opportunity to make sense of experiences with different professionals and the unit’s Expert by Experience group provided valuable space to connect. There were also perceived gaps in care: “I wasn’t being offered any kind of what I call follow up and I thought well at least that’s one lot of follow up I can have.”

Value of therapy

Many participants felt that therapy was an important aspect of their recovery, it helped overcome some of the challenges, and some found it hard to imagine recovery without it; “it saved me.” Many recommended therapy to other ICU survivors, some were aware that similar critical care psychology services were not available everywhere and also that some people who might have benefited had not accessed the service. Therapy provided a safe space with a knowledgeable psychologist to integrate and make sense of complicated experiences; “the first thing that I found particularly helpful is just being able to talk to somebody and understand, first of all, what had happened to me, but secondly . . . . . . that I’d gone through delirium, but that wasn’t unusual. . . what I had experienced was quite normal, even though. . .it was a very strange experience.” Therapy facilitated a greater understanding of the impact of psychological trauma, reduced the intensity of related symptoms, and integrated experiences. Participants described ICU-related experiences as difficult to understand, with often little opportunity to speak about. Therapy facilitated accepting and moving forwards; “I was struggling with certain things that would trigger difficulty breathing and a sense of anxiety and panic and the therapy actually helped me to address that and to almost eliminate it so that I was able to sort of come back to normal again.” Critical illness and ICU often shook participants sense of self and the world. A transformative aspect of therapy was being able to reconnect with their core values and who they wanted to be within the new circumstances in which they found themselves. All participants described changes which were difficult to come to terms with. Therapy supported a move toward acceptance and provided avenues for the future.

Accessing therapy

Challenges and facilitators were unique to each participant. Some discussed logistical difficulties, such as location of the hospital, parking, getting time off work. The hospital environment could be a trigger in itself and remote appointments were welcomed. However, others faced technical difficulties: “I’m no good with technology it annoys me.” Some would have preferred being offered therapy earlier, although others reflected that they may not have been ready had they been invited earlier. Some had accessed the service via other professionals and guilt and worry about overstretching services could be a barrier. A key shared motivator was the need to feel better; “I kind of just took it up just on the off chance that maybe it might have helped me in some way.” The psychology service offers an open-door policy of additional support if needed following discharge. Many participants described this as an important feature and often this reassurance offered containment: “it’s there if you need it again, it does help, it’s something that you can fall back on.” For participants who had accessed this ad-hoc support, a quick response was helpful to restabilise and support ongoing recovery.

Process of therapy

Participants described different expectations of therapy and often being unsure what to expect. Some participants had previous therapy experience whilst for others therapy held stigma. Many described finding the concept of EMDR strange and being unsure: “I was very open to it, I mean I was like, I gave myself to the therapy.” For some therapy was better than they had anticipated: “I didn’t realize it would be as helpful as it was.” Many described the journey of therapy as initially difficult, but with often surprisingly quick changes with lasting effects. Some participants shared that the process of EMDR was preferable to other therapies: “I preferred EMDR, it’s less intrusive in that sense, but it doesn’t want you to relive your experience from talking directly about it. It leaves a lot of it up to your own inner thoughts.” Participants described learning new ways of coping and feeling empowered to adapt and use these as needed. Many described an internalized psychologist’s voice and the strength this gave them to overcome challenges.

Role of psychologist

Participants described aspects that they found helpful: a trusting relationship; the chance to speak with someone outside of close relationships and not feel like a burden on loved ones: a safe space to connect with difficult emotions; and feeling supported by someone with skills and knowledge, whilst being empowered to go at their own pace. Many participants described the additional benefit of having a psychologist who was based within ICU. This added an additional layer of expertise and understanding: “it was good to speak to somebody . . . . who’s dealing with patients’ all the time, kind of probably seeing similar patterns that I don’t get to see.” Some participants had met the psychologist whilst an inpatient allowing for a more integrated experience.

Discussion

The service evaluation explored the lived experiences of critical care psychology follow up interventions which included EMDR, CBT and ACT. Although there is no National Institute for Health and Care Excellence (NICE) recommendation for psychotherapy related to post-intensive care syndrome there are guidelines for anxiety ¹⁴ and depression ¹⁵ which can be adapted to the ICU-survivor population. EMDR is a recommended therapy for PTSD ¹⁶ which facilitates processing of traumatic memories or memory fragments. ¹⁷ Clinically EMDR lends itself to critical care experiences where survivors do not have a chronological narrative of what happened and are most traumatized by delirium experiences. ¹⁸ EMDR can be utilized to process traumatic images and memories which underpin a range of presentations from adjustment disorder to PTSD. Interventions from the third wave of CBT were utilized such as behavioral activation, a recommended intervention for depression, CBT protocols for generalized anxiety,^19–21 and ACT therapy which has a strong evidence base in physical health settings.^22–25 ACT sits under the overarching cluster of therapies defined as CBT; whereby thinking processes are incorporated into functional analysis of behavior. ²⁶ The shared features for third wave CBT interventions include mindfulness, learning to let go of unhelpful thinking processes, values based activity, and sitting with difficult thoughts and feelings.

Findings indicate that therapy was a positive experience helpful in recovery for many reasons. Echoing previous literature,^27,28 all participants were significantly impacted by their critical illness and these experiences were often difficult to come to terms with. Many patients struggled to consider what life would be like without therapy, and for several, therapy had been lifesaving. Many participants were unsure of what to expect and most described the start of therapy as difficult. Most had undertaken EMDR, the process of EMDR with ICU survivors has been described in publications and there is an emerging evidence base.^29–32 Generally EMDR is an effective and efficient therapy with a growing evidence base for remotely delivered EMDR.^33–37 Many participants were referred for therapy via the follow up clinic, whilst others accessed it through other professionals, highlighting the importance of joined up care. “Survivors” guilt’ has been identified post-ICU ⁷ and for some it led to delay accessing treatment. The role of the psychologist was important for multiple reasons, including providing a safe space where participants could be vulnerable and understood, echoing the importance of the therapeutic relationship within effective therapy. ³⁸ Many participants expressed the value of the psychologists’ knowledge and understanding of ICU, which was felt to be an additional lens of understanding. For some participants who had met the psychologist as an inpatient, outpatient support felt like a smoother transition. This adds evidence for psychological provision embedded across critical care services.

Several patients who attended the follow up clinic did not score for clinically significant distress but were nevertheless assessed as experiencing post-ICU psychological distress and offered related interventions, a presentation probably best understood as adjustment disorder or sub-clinical PTSD symptoms. Where pre and post measures were completed there were indications that post-ICU evidence based psychotherapy can achieve clinically significant recovery for a significant proportion of patients despite often experiencing ongoing physical health difficulties, which may be life-altering or life limiting in nature. This process has highlighted the need to ensure more consistent use of post therapy outcome measures.

Psychological morbidity has a significant impact on quality-of-life post ICU^39,40 The psychological impact of COVID-19 is an area for further research. Despite the evidence of post-ICU psychological morbidity and national policy around the need for psychological assessment and intervention,^6,8 benchmarking indicates that the majority of UK ICUs do not have access to a psychologist ⁴¹ and very few offer post-ICU evidence based psychotherapeutic interventions. The findings of this service evaluation indicates the potential value of doing so.

Strengths and limitations

The data is limited; therefore the sample of participants may not be representative of all those seen by the psychologist and it may be that people who had positive experiences were more likely to participate. There is currently a paucity of research regarding psychological intervention following critical illness, including research seeking to understand and explore the lived experience of such interventions. The service evaluation adds valuable information to the currently limited field and gives important insights as to why therapy is significant within recovery.

Recommendations

There is limited evidence that psychologically informed interventions whilst in intensive care prevents the development of ICU related PTSD.^42,43 Despite this most research focuses on the prevention of PTSD; therefore, there is an absence of guidelines on delivering therapy with the ICU survivor population. ⁷ Research is needed to evaluate post-ICU evidence-based interventions, and explore cost-effectiveness including possible enhanced ability to manage ongoing physical health. This paper reflects one unit’s experience which may facilitate other ICUs to conceptualize their potential critical care psychology service development options. It is important to ensure optimal access for people experiencing post-ICU psychological distress, providing different routes into the service. Offering follow-up, validating experiences, and encouraging accessing therapy helps ensure early treatment and prevention of challenges becoming entrenched. As services adapt to hybrid models of working, providing accessible options is important, as is ensuring that patient choice is held at the center of therapeutic work. Recovery following critical illness is multifaceted; therefore, intervention needs to target the multiple areas of patient’s lives which have been affected. Integrating psychologists within critical care rehabilitation teams including follow up can ensure patients receive vital treatment from experienced clinicians who understand the context of such a specialist environment.