The interactivity and independence of Recovery challenges and coping strategies for ICU survivors and their caregivers: a systematic review and Meta-synthesis
The post-ICU home recovery period requires patients and caregivers to confront recovery challenges and adopt coping strategies as a family dyad, necessitating effective dyadic interaction patterns. Existing qualitative research shows that the dyads face interactive or independent challenges and employs varying coping strategies, which may include strong communication or, conversely, avoidance. However, a single qualitative study alone might offer limited generalizability, and there is a lack of broader, more nuanced understanding about the recovery challenge and copings among ICU survivors and caregivers. This meta-synthesis aims to figure out the interactivity and independence of challenges and coping strategies during the recovery process for ICU survivors and caregivers.
Methods
This is a meta-synthesis of qualitative studies, which was guided by the Stress and Coping Framework. We systematically reviewed six electronic databases, including PubMed, Medline, the Cochrane Library, CINAHL, PsycArticles, and PsycInfo, for relevant qualitative studies published from inception to January, 2024. We utilized a content analysis approach for data analysis. Presentation of this synthesis adhered to the PRISMA guideline and the ENTREQ guideline.
Results
After full-text screening, 49 studies were included. Four themes with 16 sub-themes emerged from this synthesis including, interactivity of recovery challenges for ICU survivors and caregivers (subthemes: Life was turned upside down, Situational overstrain, Isolation without compassion, Empowerment conflicts, Marginalized support), independence of recovery challenges for ICU survivors and caregivers (subthemes: Recovery means silent suffering, Gap in memory, Sacrificing to caregiving), interactivity of recovery coping strategies for ICU survivors and caregivers (subthemes: Reorientation of mindset, Cultivating inner power, Sharing burden with an open-ear, Going through thick and thin together, Negotiating care level), and independence of recovery coping strategies for ICU survivors and caregivers (subthemes: Wearing a faked smile, Developing daily routine, Seeking respite).
Conclusions
The findings suggest that ICU survivors and caregivers experience overlapping yet distinct challenges during recovery, often involving shared coping strategies, alongside a need for individual space. These results support the presence of both interactivity and independence in recovery challenges and coping strategies for ICU survivors and their caregivers. Therefore, we call for future dyadic or family interventions to target both ICU survivors and caregivers, taking advantage of their interactivity and desire for gradual independence, so that fostered individualized coping strategies adapted to flexible contexts.
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Introduction
Admission to the intensive care unit (ICU) due to life-threatening illness profoundly disrupts the lives of both survivors and caregivers. Despite improvements in ICU survival rates, the long-term survival of patients surviving in the ICU (referred to as ICU survivors later) remains low [1, 2], which underscores the enduring effects associated with critical illness and ICU hospitalization. As a result, research focus has shifted notably towards the post-discharge rehabilitation of ICU survivors and their caregivers [3].
Various multidisciplinary support sources have been explored for individuals discharged from the ICU and their caregivers, including post-discharge rehabilitation programs, ICU diary-based follow-ups, peer support, and counselling-based interventions. However, most of these interventions are not widely available. Challenges existing before ICU admission or acquired during the ICU stay persist throughout the recovery process. ICU survivors may experience new or worsening physical, psychological, and cognitive problems, often termed as post intensive care syndrome (PICS). Families primarily experience psychological and mental health problems post-ICU, referred to as post intensive care syndrome-family (PICS-F) [4]. Drawing on in-depth exploration of ICU survivors’ and caregivers’ experiences in qualitative studies, more nuanced recovery challenges faced by ICU survivors and caregivers, such as intimate relationship conflicts, have been disclosed [5]. As recovery progresses, both survivors and caregivers will acquire some adaptable coping mechanisms. For example, positivism, fighting spirit, and redefinition have been reported to develop longitudinally as approach-oriented coping strategies after patients are transferred out of ICU [6]. Conversely, in certain situations, avoidant and negative coping mechanisms may take hold [7]. The intricate nature of coping mechanisms within post-ICU families makes a single qualitative study alone might offer limited generalizability. A systematic review enables the integration of findings across multiple qualitative studies, allowing for a broader, more nuanced understanding of the shared and divergent emotional and psychological experiences of ICU survivors and their families. Thus, it is crucial to conduct a systematic meta-synthesis to offer an overarching framework to inform tailored interventions and support strategies for this population.
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There have been meta-syntheses examining experiences, challenges, and coping strategies during post-ICU recovery, focusing solely on ICU survivors or caregivers and neglecting the dyadic world [8‐10]. Critical illness is rarely an individual experience; instead, it is co-constructed within the family unit and involves mutual influences between the patients and their family members [11]. It is necessary to analyze the challenges and coping strategies for post-ICU recovery from the dyadic perspectives of ICU survivors and caregivers. Qualitative research on dyads indicates that both ICU survivors and their caregivers can experience similar recovery challenges, such as recovering from emotional distress and challenges arising from their interactions and communication with each other [12]; this implies the interactivity of post-ICU recovery challenges between ICU survivors and caregivers, which may be regarded as the shared challenges perceived by survivors and caregivers. However, ICU survivors and caregivers sometimes view the other as “outsiders” to their experience and perceive challenges specific to their own roles [13]; this may be related to the independence of post-ICU recovery challenges among ICU survivors and caregivers, namely, challenges unique to their own recovery journey. With respect to post-ICU recovery coping models, an increasing number of studies investigating how family involvement functions in survivors’ rehabilitation have revealed collaborative coping between ICU survivors and caregivers post-discharge [14]; this implies the interactivity of post-ICU recovery coping strategies between ICU survivors and caregivers, which may indicate that both parties resort to dyadic alliances to address challenges. Similarly, there is independence of post-ICU recovery coping strategies between ICU survivors and caregivers [15], which refers to both parties navigating their unique challenges separately. By ‘interactivity’, we refer to the sharing and interplay between patients and their caregivers, which plays a pivotal role in shaping their recovery journey. ‘Independence’, however, pertains to the degree of autonomy individuals can maintain in managing their health and daily activities post-ICU. Systematic reviews have been conducted integrating dyadic qualitative findings on chronic disease populations such as those related to cancer and dementia [16, 17], emphasizing the interactivity and independence of patients and caregivers in the process of disease management. Nevertheless, currently, no systematic review is available on the dyadic recovery challenges and coping strategies of ICU survivors and caregivers. We believe that the interactivity and independence of challenges and coping strategies found in the aforementioned studies on chronic disease populations will also be identified among ICU survivors and caregivers. Because both disease diagnosis and ICU admission can be viewed as health-related stressors affecting families, who continually face challenges arising from the emergence of these stressors.
The dyadic stress and coping model provides a structured framework for organizing the responses individuals experience when facing and managing stress [18]. The stress and coping framework was first proposed by Lazarus et al. [19], who initially focused on the individual and proposed that the process of perceiving stressors is the interaction between an individual’s characteristics and their context. The stress and coping frameworks was subsequently expanded to focus on the dyad in 2017. The expanded model moves beyond individual strategies for coping with one’s own stress to focus on what partners do or do not do for each other and together to handle stress. According to this model, the dyadic coping process involves partners’ communication and includes individual responses to a partner’s stress when the stressor is viewed as concerning one partner (individual-oriented appraisal) or conjoint responses when the stressor concerns both partners or an individual stressor is viewed as a “we” or shared problem. Within this model, an individual’s stress and coping can affect both their own health and that of their partner, highlighting how individual and dyadic coping efforts can alleviate the impact of challenges.
This model is particularly relevant to our research because it focuses on dyadic relationships and the management of challenges and coping strategies. In addition, the model components address both the individuality and shared experiences between patients and caregivers, emphasizing communication and interactions that align closely with our research objectives. Therefore, guided by the stress and coping framework, this meta-synthesis aims to elucidate the interactivity and independence of challenges and coping strategies during home recovery for ICU survivors and caregivers.
Methods
We conducted this systematic review following the Preferred Reporting Items for Systematic Reviews and Meta Analyses (PRISMA) 2020 statement [20] and structured the reporting of systematic reviews for qualitative studies according to the ENTREQ guidelines [21]. We chose to use the aforementioned two guidelines to present this systematic review in accordance with the statement of Page et al.: “The PRISMA 2020 items are relevant for mixed-methods systematic reviews (which include quantitative and qualitative studies), but reporting guidelines addressing the presentation and synthesis of qualitative data should also be consulted.” [20] The specific implementation process is discussed below.
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Information sources
We systematically searched databases including PubMed, Medline, the Cochrane Library, CINAHL, PsycArticles, and PsycInfo from inception until January 2024 for original peer-reviewed studies written in English and published in full-text. We selected these databases based on their frequent use in similar research. PubMed and Medline are widely used biomedical databases, while Cochrane is a leading source of evidence-based health literature. CINAHL provides access to the latest journals in nursing and health, and PsycArticles and PsycInfo cover behavioral and mental health publications. Given the study’s focus on healthcare, family caregiving, psychological coping, and evidence synthesis, these databases were chosen as the most relevant sources.
Search strategy
This meta-synthesis identified qualitative studies examining the experiences of ICU survivors and their caregivers to obtain knowledge of the interactivity and independence of challenges and adaptations during recovery from critical illness. The searching approach was pre-planned. The searching terms used for PubMed are as follows: (“mixed method*” OR “Anthropology” OR “Focus Groups” OR “phenomenon*” OR “interviews” OR “qualitative” OR “grounded theory” OR “group discussion*”) AND ((“ICU*” OR “intensive care” OR “critical care” OR “critical illness*” OR “critically ill”) AND (“recovery” OR “post-intensive care” OR “post-ICU*” OR “discharge” OR “rehabilitation” OR “back” OR “transfer*”)). Examples of searching terms in other databases are displayed in sTable 1 of the supplementary materials.
Eligibility criteria
We developed the study’s inclusion and exclusion criteria based on the PICOS (Population, Intervention, Comparison, Outcome, and Study design) framework.
Inclusion criteria
Population (P): This meta-synthesis is focused on survivors admitted to the ICU within the past two years and then discharged and their caregivers. The choice of a two-year timeframe is informed by research indicating that 56% of ICU patients still experience PICS 12 months after discharge, and in the two-year follow-up, 41 patients (38.7%) experiencing symptoms in the physical domain and 16 patients (15.4%) in the psychological domain [22]. To ensure the collection of experiences reflecting recovery challenges encountered by both patients and caregivers as long as possible, while also minimizing recall bias that may arise from a more extended timeframe, we included survivors admitted to the ICU within the past two years. Although a standardized definition of ICU survivors is currently lacking, we reference prior research to define ICU survivors as patients who were admitted to the ICU for ≥ 24 h and subsequently discharged alive from the hospital [23]. We defined caregivers as any unpaid family member, significant other, or close friend who renders social, emotional, and/or instrumental support to the patient throughout the rehabilitation and recovery period [24]. The inclusion criteria encompassed studies involving both ICU survivors and caregivers, as well as studies focusing solely on survivors or caregivers, to ensure comprehensive data.
Interest of phenomena (I): The primary interest lies in exploring the challenges and coping strategies encountered by survivors and caregivers during the post-ICU and post-hospital periods. This encompasses various settings, such as homes, outpatient clinics, and the community, while excluding inpatient settings. Studies that broadly described the post-ICU experience without explicitly mentioning challenges or coping strategies were also considered, recognizing that these terms may not be explicitly addressed in some studies.
Context (C): The meta-synthesis delves into the experience of recovery/rehabilitation following discharge to home, namely the progression and return of function and ability to complete activities of daily living relevant to the individual’s previous activity levels.
Outcome (O): The outcomes are the experience of recovery challenges and coping strategies.
Study Design (S): Qualitative or mixed-method studies reporting qualitative results were considered to be included.
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Exclusion criteria
Exclusion criteria
Studies with the following were excluded: (1) participants < 18 years of age (because patients < 18 years have guardians whose experiences in supporting recovery differ significantly from those of family members aiding adult patients. These differences in role expectations and emotional experiences could complicate the interpretation of results and introduce additional confounding effects); and (2) individuals who had been transferred from ICUs to wards and remained hospitalized during the study period.
Selection process
The preliminary database search yielded a total of 3441 identified studies. Considering the inclusion and exclusion criteria, a further screening of titles and abstracts was subsequently independently conducted by ZY Z and LS Y. The full texts of these remaining studies were then obtained, and their reference lists were examined to evaluate their suitability for inclusion in the meta-synthesis. In cases where there was disagreement between the two reviewers (ZY Z and LS Y) regarding the final inclusion decision of specific articles, the issue was discussed by the entire team to reach a resolution. We adopted the viewpoint of the one with the most votes (three authors voted: ZY Z, LS Y, and H C) in the final vote. However, no disagreements between the two authors (ZY Z and LS Y) occurred during the process of selection.
Data collection process
A data extraction form developed according to the Joanna Briggs Institute (JBI) information was used by two researchers independently [25]. Standardized data extraction tools promote the extraction of similar data across all of the included studies and are required for JBI systematic reviews. All qualitative data under the heading “results/findings” was extracted manually and entered into an Excel spreadsheet. The extracted content included the first author and publication year, country, study design, aims, participants, methods and main findings and their illustrations.
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Study risk of bias assessment
The studies were then given a quality assessment score via the 10-item Critical Appraisal Skills Program (CASP) [26] in terms of (a) clarity and appropriateness of objective and aims, (b) appropriateness of qualitative methodology, (c) study design, (d) sampling method, (e) data collection, (f) reflexivity of researchers, (g) ethics, (h) data analysis, (i) rigor of findings, and (j) significance of the research. Each item was rated as No (1 point), Can’t tell (2 points), or Yes (3 points) with a total quality score ranging from 0 to 30. Any discrepancies that emerged from the process of data extraction and quality assessment were resolved by discussion with the team to reach an agreement.
Synthesis methods
The process of deriving the themes was deductive, given the predefined research questions and the inclusion of a theoretical framework. We utilized a content analysis approach, as it allows for analyzing qualitative data within the bounds of existing research and theoretical concepts. This method was selected to align with our aim of examining ICU survivors’ and caregivers’ recovery challenges and coping strategies in the context of a defined framework, facilitating a focused synthesis of relevant findings. Synthesis was conducted following the process put forward by Walsh & Downe [16, 27]. First, the qualitative results of all included studies were subjected to line-by-line coding. These codes were subsequently consolidated on the basis of similarities and differences, and categorized into (a) challenges and (b) coping strategies. To distinguish interactivity from the independence of challenges and coping strategies, we conducted a comparative analysis of the condensed codes for ICU survivors and caregivers. Each code was examined in light of whether it reflected challenges or coping mechanisms related to direct interactions between the two groups, or whether it was specific to the unique experiences of each group. For instance, codes reflecting shared emotional burdens or communication challenges were classified as interactive, as they illustrated issues requiring mutual adaptation and support between survivors and caregivers. In contrast, codes representing personal coping strategies—such as individual resilience for survivors or external support systems for caregivers—were classified as independent, highlighting strategies or challenges arising within each group separately. The former two reviewers were involved in the coding and analysis process.
To minimize potential risk of bias from missing results due to reporting biases, we undertook several steps. We conducted a comprehensive and systematic literature search to capture all relevant studies, and we critically appraised each study using the CASP checklist. This ensured a balanced and representative inclusion of findings, reducing the likelihood of bias from selective reporting.
Results
Characteristics of the included studies
Initially, 3441 records were identified through database screening, with 1792 from PubMed, 966 from Medline, 324 from the Cochrane Library, 280 from CINAHL, and 79 from PsycArticles and PsycInfo databases. Then we identified totally 1212 duplicates among these records and excluded them. After reading the title and abstract, a further 2050 articles were excluded due to irrelevance. Additionally, 36 articles were excluded due to participants were younger than 18 years old, 22 studies were excluded due to the hospitalization context, 38 articles were excluded due to a focus solely on opinions about an intervention, and 34 were excluded due to the inability to extract topics on challenges and copings. Thus, a total of 49 studies were included in this meta-synthesis. The detailed enrollment process of studies and results from each searched database were provided in Fig. 1 and the supplemental materials. These studies were conducted in the United States (n = 9, 18.4%), the United Kingdom (n = 7, 14.3%), Australia (n = 5, 10.2%), Denmark (n = 5, 10.2%), Norway(n = 4, 8.2%), Sweden (n = 4, 8.2%), Cannada (n = 3, 6.1%), Korea (n = 3, 6.1%), China (n = 2, 4.1%), Netherlands (n = 2, 4.1%), Jordan (n = 1, 2.0%), Spain (n = 1, 2.0%), Ireland (n = 1, 2.0%), France (n = 1, 2.0%), and Italy (n = 1, 2.0%). Most included studies sampled ICU survivors (n = 24, 49.0%), and some studies focused on caregivers (n = 12, 24.5%) or dyads (n = 13, 26.5%), with sample sizes ranging from 6 to 90. Among the included studies, 28 adopted a descriptive qualitative design, whereas others adopted hermeneutic phenomenology (n = 8, 16.3%), grounded theory (n = 8, 16.3%) or mixed-method design (n = 5, 10.2%).
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Fig. 1
Flow chart
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Quality assessment showed that all studies had clear aims, and a qualitative approach was appropriate (n = 49, 100%). Most of the studies had appropriate designs (n = 45, 91.8%), recruitment strategies (n = 37, 75.5%), data collection methods (n = 39, 83.0%), ethical issue considerations (n = 47, 95.9%), data analyses (n = 42, 85.7%), statements of findings (n = 44, 90.0%), and statements of research value (n = 45, 91.8%). Concerns were noted in the relationship between the researcher and participants and in the data analysis, with only 4 studies [15, 28‐30] fully meeting the CASP criteria. The CASP scores and other detailed characteristics for each study are presented in sTable 2 in the supplementary materials. We did not weight or exclude any studies during the process of quality assessment of the included studies because the literature quality assessment process is subjective, and the aim was to obtain as much data as possible.
Synthesized findings
By synthesizing findings from the included literature, we observed that ICU survivors and caregivers mutually recognized the challenges they face as a combination that is inherent in recovering from critical illness. Nevertheless, they also experienced distinct challenges that may not be fully comprehended by the other. In response to these challenges, ICU survivors and caregivers provided mutual support during difficult times and developed coping mechanisms suited to their respective roles. As a result, four main themes emerged: Theme 1: Interactivity of recovery challenges for ICU survivors and caregivers; Theme 2: Independence of recovery challenges for ICU survivors and caregivers; Theme 3: Interactivity of recovery coping strategies for ICU survivors and caregivers; and Theme 4: Independence of recovery coping strategies for ICU survivors and caregivers. Figure 2 presents the main findings of this article, and Table 1 presents the subthemes and specific findings related to each main theme along with the literature supporting each finding.
Fig. 2
Main findings
Table 1
Presentation of derived main themes and sub-themes
Themes and Sub-themes
Categories
Quotation
References
Theme 1: Interactivity of recovery challenges for ICU survivors and caregivers
Life was turned upside down
Constraints revolving physical, emotional, and cognitive, social aspects
I don’t feel as though I could do things that I used to be able to do, like get up and you know, just walk here or go there or go fishing. -P*
I have lots of mobility issues, bending down is just impossible. I feel dizzy. -C*
There should be no difference in COVID recovery to any other recovery provision…having designated teams that you know in your area you can contact for that support. -S
They use to take my opinion in every aspect of their lives, I can’t find this anymore. Now they consult their mother, and act as if I’m still in hospital. -S
He has caused his own illness, but doesn’t want to change behaviors despite that… -C
My personal opinion, she could have taken a little more time off work because I think I was kind of pushed out of the boat before I was ready to swim. -S
It’s too hard…(sigh)…I even wished we both died together. -C
My daughter says, “This is no longer a topic. You are well and on the road to recovery now.” Fair enough, I will not keep bringing it up. However, I think I will never be able to put this behind me. -S
It’s too hard…(sigh)…I even wished we both died together-C
Like you’re trying to deal with your own feelings and you’re trying to deal with the person that’s sick, and then you’re trying to deal with your family and your children. -C
Because we will never go back to those days when each of us played our own role…It was true that it was shocking…As time passed, however, there was a process of healing. -C
When the physical therapy stopped, I still needed more rehabilitation. A young nurse told me about senior fitness. This is private, so you have to pay by yourself. -S
Physical therapists were really helpful in getting me up and moving at the hospital and rehab. -P
In the beginning, I was utterly dependent on others, but now it is much better. I can practically manage myself now. -S
… From me being the one that was protected in all situations in the best possible way, to my husband who had a hard time accepting that now I wanted to do things myself. -S
ICU: intensive care unit. *:S stands for ICU survivors, C stands for caregivers
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Theme 1: Interactivity of recovery challenges for ICU survivors and caregivers
This theme refers to the interconnected nature of recovery challenges faced by both ICU survivors and their caregivers, highlighting how the recovery journey affects the entire family unit. Recovery from an ICU stay is not an isolated process for the survivor, but is a collective journey full of challenges that requires mutual adaptation, understanding, and cooperation between survivors and caregivers. Both survivors and caregivers acknowledged experiencing a multidimensional disruption of their lives after the ICU transfer (life was turned upside down). These shared disruptions were not limited to individual experiences but were compounded by the interdependence of their roles in recovery. Vivid and often distressing memories of the ICU experience persisted for both groups, creating a shared emotional and psychological burden (situational overstrain). Additionally, as a family unit, they also suffered from pressure associated with external social contact and even discrimination (isolation without compassion), as well as a sense of helplessness caused by a lack of medical support (marginalized support). Finally, the imbalance in perceived roles and responsibilities during interactive recovery frequently led to tension and stress between survivors and caregivers (empowerment conflicts), further illustrating the inherently interactive and relational nature of their challenges.
Life was turned upside down
Both ICU survivors and caregivers consistently declared a wide range of profound constraints revolving around physical limitations (weakness, disobedient limbs), emotional liability (sadness, despair, and impatience), cognitive impairments (forgetfulness) and relational conflicts that lingered after critical illness or emanated during the recovery process [10, 14, 31]. The overwhelming realization of critical illness experiences, which alienated these individuals from their once familiar identities, evoked a sense of grief at the loss of their previous autonomy and security [13, 15].
S (In the following, S stands for the survivors): Who am I? I don’t know. Being ill and dependent for so long has become part of who I am
When caregiving predominated within the family, role reassignment occurred, which could lead to emotional distance between survivors and caregivers, even resulting in family conflicts [5, 32‐34]. What further strained the relationship between ICU survivors and caregivers was their discrepant assessments of the survivor’s performance [35]. For instance, some survivors may perceive themselves as physically well, while caregivers continue to identify significant functional limitations. Conversely, survivors may experience profound internal distress that caregivers fail to recognize or adequately assess. The inconsistency might stem from a lack of communication and empathy, focusing solely on the survivor’s tangible physical recovery while overlooking their psychological healing process. Both ICU survivors and caregivers alluded not only to the distress of witnessing fluctuations in their own and each other’s physical and mental status but also to how their loved one’s distress became their own [29, 36‐38].
C (In the following, C stands for the caregiver): I didn’t feel so emotional about myself – that it was hard on me, but I felt so bad for him and the children. I don’t really think there was any room in me for more emotions
Situational overstrain
Over time, however, the lingering effects of critical illness served as a poignant reminder, leading to distressing memories for both ICU survivors and caregivers. This included hallucinations and occasional terrifying flashbacks, which led to persistent rumination [39‐41]. Both ICU survivors and caregivers struggled to disengage from pervasive information regarding the illness and remained acutely attuned to the critical care environment. They often experienced emotional turmoil akin to “reliving” their time in the ICU [42, 43].
S: I had this nightmare that, I, and I had it a lot, that I was being victimised….
Fear and worry loomed large in their minds. They often reflected on the severity of the survivor’s condition and the ever-present threat of a recurrence of critical illness or collapse [5, 32, 36]. Such intrusive anxiety contributed to the dyads focusing excessively on survivors’ symptoms, causing them to wake up during nighttime sleep and concentrate on the survivor’s breathing [38, 44]. Their heightened vigilance stems from concerns about disease recurrence, with the aim of detecting signs of recurrence as early as possible through close monitoring of symptoms.
C: I’m really worried about him leaving…What if he can’t handle it…Even when sleeping, I check on my husband
One caregiver described how caring for survivors requires the caregiver to remain vigilant. However, it is comforting that such anxiety can improve with the cultivation of coping skills.
Isolation without compassion
Narratives from both ICU survivors and caregivers emphasized the growing chasm in their social relationships, whether spatially or emotionally. In addition to taxing rehabilitation tasks that impose a tight schedule on both ICU survivors and caregivers [35, 45], the isolating effects of the COVID-19 pandemic further diminished their social interactions [30, 33, 46]. Another social burden that weighed heavily on dyads stemmed from the misunderstanding of “outsiders”, which included (1) feeling burdened by being the center of attention in their social circles, (2) facing unrealistic expectations from their social environment regarding their recovery, (3) experiencing misunderstanding from those around them regarding their ongoing struggle for psychological recovery despite appearing outwardly well, and (4) encountering a lack of recognition and validation of the complexity of their suffering, exacerbating their social withdrawal.
S: People…sometimes don’t know what you go through. They think that because you are in one piece, everything is fine. But inside I’m all screwed up now
ICU survivors and families affected by COVID-19 even suffered from stigma or social disgrace [47]. Owing to disheartened social engagement, ICU survivors and caregivers often suppressed the urge to share, as “relationships inattentive to their struggles were often terminated” [34].
Empowerment conflicts
Being desperate for independence, both ICU survivors’ and caregivers’ needs for and handling of independence at times affected the pace of convalescence. ICU survivors who were discharged home with feelings of powerlessness, ignorance, redundancy, and self-perceived burden strived to chart the course of self-care [33, 34, 48, 49]. Tensions arose when survivors felt overwhelmed by caregivers’ interference and reluctance to relinquish control. Conversely, caregivers experienced frustration with their survivors’ apparent lack of initiative [28, 50, 51].
S: I hate that my family and friends treat me like a patient… I am going to forget about the fact that I inserted an artificial pacemaker
In fact, some caregivers persisted in providing care because of their sense of duty, whereas ICU survivors did not take ownership of recovery because of their confined capabilities. Unfortunately, they seldom discussed these issues openly, leading to escalating conflicts over delegation compounded by the lack of communication.
C: …It’s not something that I can make him do [exercise], he has to want to do it, but he also has to feel well enough that he wants to do it. And I think that’s part of the problem that he just doesn’t feel well
Marginalized support
Dyads often experienced setbacks in accessing health care support immediately following discharge home [45, 52‐54]. Survivors expressed feelings of being “left without a lifeline”, and caregivers described a sense of being “left on my own”. Both survivors and caregivers claimed that they might have gone home too early, without sufficient information and communication, leaving them feeling unprepared and uncertain as they embarked on their recovery journey alone [55‐57].
C: I mean around here you’re not going to find any medical help that’s going to be decent
Criticism was directed towards the fragmentation of care, citing (1) a paucity of honest, clear, and timely information; (2) the absence of anticipatory guidance on what to expect or how to gauge progress; (3) uncertainty regarding available resources or whom to contact for assistance; (4) inadequate medical and psychosocial follow-up, including individualized counselling; and (5) inequities in health care availability, particularly in rural areas. To make matters worse, health infrastructure had been strained as a result of COVID-19, further depleting already scarce medical resources [13, 30, 50].
Theme 2: Independence of recovery challenges for ICU survivors and caregivers
This theme captures the unique and independent challenges that ICU survivors and caregivers face due to their distinct roles and individualized recovery paths. Owing to their distinct role orientations and varying paths of recovery, ICU survivors and caregivers voiced their individual challenges. Unsurprisingly, survivors shouldered the brunt of recovery challenges post-ICU discharge, often finding the process more arduous than anticipated (recovery means silent suffering). Meanwhile, caregivers grappled with substantial caregiving and emotional burdens (sacrificing to caregiving). Disparities in navigating challenges were further underscored by differences in the recollections of their ICU experiences (gap in memory). Survivors and caregivers noted each other’s inability to fully empathize with their respective experiences, sometimes leading to avoidance of communication.
Recovery means silent suffering
ICU survivors experienced rehabilitation activities as time-consuming and often unattainable [55, 58], leading to an agonizing burden. Demoralized by pre-morbidities and the rigors of post-ICU treatment, survivors’ capabilities to recover were compromised [44, 59].
S: Now I get some other pills, but I don’t take them because they make me dizzy. I get tired and have difficulties concentrating
They prioritized strenuous efforts over maintaining their current condition but frequently faced frustration due to minimal gains and subsequent periods of bedridden status [49, 54, 56, 60]. Coordinating follow-up appointments and determining appropriate exertion levels remained challenging. In addition, ICU survivors demonstrated a unique form of ‘survivor guilt’ when witnessing those who were less fortunate [61, 62].
S: …There were also feelings of guilt for having survived, while so many others died
On the one hand, they felt a sense of injustice and misfortune regarding their own circumstances; on the other hand, they experienced guilt over their own survival while others endured continued suffering or even death.
S: I am bitter, why would I be punished, I don’t get any understanding or acceptance for my situation. I didn’t ask to become ill.
Gap in memory
There was no doubt that both ICU survivors and caregivers had been so acutely unwell; however, their feelings might not be the same [12, 13, 33, 35]. Many ICU survivors were left with fragmented or absent memories of their time in the ICU, amplifying feelings of ambiguous loss. In contrast, caregivers vividly recalled the emotional turmoil of the ICU experience, which remained indelible.
C: And you said my daughter and your husband have filled in some of the gaps… Oh yes. I wouldn’t know if they hadn’t told me because I wasn’t here. Well, I was, but I weren’t, was I?
This disparity in memory was likely exacerbated as family and friends became less inclined to revisit discussions about the illness and ICU stay over time, leaving ICU survivors to grapple with their feelings of distress in isolation.
S: My daughter says, “This is no longer a topic. You are well and on the road to recovery now.”
Sacrificing to caregiving
Influenced by societal norms and cultural expectations, caregivers often felt a deep-seated responsibility for the recovery of survivors, sometimes feeling trapped in this role. The demanding caregiving tasks, coupled with the need to maintain their previous family roles, left caregivers physically and emotionally drained as if there was no escape.
C: I feel a considerable burden to handle everything
Additionally, there were feelings of depression, anxiety, fear, imprisonment, and resentment, as well as guilt for harboring these negative feelings. Caregivers described that their lives revolved around the survivors, often putting their priorities on hold to the extent that their own health affairs were neglected [28, 36, 43].
C: You have to be strong, and thus you end up neglecting much of your own feelings
Moreover, caregivers often felt frustrated when survivors were uncooperative, feeling as though their efforts were futile:
C: I know he is scared, but he doesn’t seem to realize how hard on me this is…how hard it is for our kids
Theme 3: Interactivity of recovery coping strategies for ICU survivors and caregivers
This theme explores the collaborative coping strategies that ICU survivors and caregivers employ, emphasizing their joint efforts to navigate the recovery process as a unified team. As a cohesive unit, survivors and caregivers typically opted to tackle challenges together through concerted efforts. They favored positive dyadic coping styles, fostering renewed confidence in their ability to support one another in managing stress (reorientation of mindset). They were adept at harnessing the power of their psychological capital (cultivating inner power) and tapping into their social networks for support (sharing burden with an open-ear). Of course, they placed great value on companionship and simply being there for each other (going through thick and thin together). Consequently, they willingly engaged in open communication and negotiated the caregiving process, even when conflicts arose in their interactions (negotiating care level).
Reorientation of mindset
Throughout the recovery journey from critical illness, a significant turning point occurred when ICU survivors and caregivers embarked on a process of self-redefinition, comprising letting go of certain aspects, retaining others, and developing new facets [50, 57, 63]. Recognizing that their lives would never fully return to their pre-ICU state, survivors and caregivers turned to embraced the ICU experience as a new side of their lifeworld [29, 45, 64].
C: As time passed, however, there was a process of healing
S: I have got such a different outlook on life…I’ll have the odd day where I will dwell a bit…but everyday is a new day and its a beautiful day…I’m a different person
Despite the long time taken to come to terms with traumatic experiences, ICU survivors and caregivers depended on each other to fill memory gaps [43, 44, 49], viewing this as a sense-making process in which positive reframing of the meaning of life occurred.
Cultivating inner power
Underpinning identity reconciliation was the activation of inner strength, encompassing qualities such as hopefulness, optimism, humor, generosity, gratitude, acceptance, spirituality and determination [28, 29, 37, 60, 65].
S: I say to my wife: I am “manic” positive!
Faith and religion also emerged as significant sources of comfort, as noted by both survivors and caregivers [32, 51, 57].
C: Prayer is helping me a lot
ICU survivors and caregivers underwent a profound shift in their perspectives on death and life, viewing them with either reverence or fearlessness. The narrowly escaping death served to underscore the preciousness of life’s simple pleasures that were previously taken for granted. The importance of time and love was highlighted [5, 14, 36, 40].
S: It’s probably subconsciously realizing how fragile life is and things I would never have noticed before
To live in the very moment and not plan for the future, both ICU survivors and caregivers changed their values and realized the paramount importance of family in their lives.
Sharing burden with an open-ear
While acknowledging the inadequacy of external support, there were multiple channels (e.g. social activities, help from friends, relatives, and neighbors) through which emotional support and practical assistance were provided for ICU survivors and caregivers [33, 37, 42, 66].
C: I told my son that daddy was in the ER. He was startled and said he was coming…he contacted his brothers and sisters and came with them. I can stand it because my kids are always supportive
Sharing emotional burdens through trusted outlets, particularly those who have undergone similar experiences, has emerged as a solution [38, 67]. Peer support was emphasized as a preferred option [38, 63].
S: I think it is better to talk about things than hiding them. Some things are hard, though
In addition to mobilizing resources within their social circles, ICU survivors and caregivers rely on formal care, including post-ICU clinic visits, organizational or private professional services, spiritual consulting, occupational therapy, community services, and psychological clinics [35, 37, 60, 67]. Some participants also mentioned seeking supplementary information from the internet. However, there were instances where either ICU survivors or caregivers declined assistance, assuming that asking for help was a sign of failure. Other reasons for these exceptions may be dogged self-determination or some unknown reason [30, 34, 45].
Going through thick and thin together
A powerful motivator of recovery for ICU survivors and caregivers was the eagerness of being with each other. The sense of ‘being there with’ was the silver lining throughout the ordeal of critical illness for survivors and their caregivers, starting with hospitalization, where the desire to be with loved ones and to return home was signified [56], to the discharge back home where they worked on recovery and celebrated improvements together [49, 58, 68].
C: …if he heard me or not, I didn’t know. … And I just wanted to be here. That’s all. I just wanted to be with him Just be there (in a very affirmative tone). . .
S: …(When asked about the importance of companionship) I feel it is good for the patient. At least I hope so, and it was good for me
The devotion of familial commitment was evident in how survivors made allowances for the burdens their families shouldered and in how caregivers made significant efforts to deliver care in the spirit of mutual support [28, 30, 57].
Negotiating care level
To achieve a “new normal” life, ICU survivors cherished their independence and were resolute in navigating the recovery journey without external assistance [58, 62].
S: I liked feeling like I was part of the decision-making
Meanwhile, caregivers found it helpful to delegate tasks and involve survivors in decision-making regarding their care [5, 35], thus initiating the delegation process.
Caregivers initially functioned as gatekeepers for all forms of support, especially when survivors were utterly dependent on others to perform simple functions after discharge. As the feedback mechanism (ability, confidence, and willingness) was employed [28, 37, 69], caregivers gradually became less reliant on meeting survivors’ needs.
C: So, I said that either he would pull himself together and take a walk, or I would go to the summer house and he would have to manage on his own. I was so angry that I cried. But then he got up and walked to the beach and back
As this caregiver said, expressing expectations and demands to the survivor prompts him to reduce dependency on the caregiver and achieve faster recovery of physical function.
Herein lies the way in which ICU survivors and caregivers overcame hardship in the empowerment process: (1) reshaping familial responsibilities; (2) acknowledging and celebrating incremental recovery milestones; (3) navigating the complexities of the health care system together; (4) consciously redirecting the expectations and goals; and (5) providing positive encouragement from caregivers.
Theme 4: Independence of recovery coping strategies for ICU survivors and caregivers
This theme highlights the individual coping mechanisms adopted by ICU survivors and caregivers, underscoring their need for personal space and self-directed strategies in the recovery process. Not all journeys of recovery were necessarily shared; at times, ICU survivors and caregivers discovered the need or desire to pursue their individual space. Some resorted to avoidance strategies as a temporary means of escaping pressure (wearing a faked smile). Caregivers also sought moments of respite to reclaim aspects of their previous routines (seeking respite). Ultimately, both parties independently cultivated skills relevant to their roles (developing daily routine), enabling them to navigate challenges they encountered on their own.
Wearing a faked smile
Some ICU survivors and caregivers identified avoidant coping strategies to be effective in some circumstances, helping them temporarily escape the harsh realities they face. By drawing their own conclusions to put strenuous events behind them, they made it easier to move forward in life [15]. Engaging in hobbies, exercise, and social interactions became ways for survivors and caregivers to distract their thoughts and emotions [28].
S: I watch nature, which helps me concentrate on other things than my pain
The degree of this emotional repression might escalate to the point where memories were deliberately hidden, ICU experiences were tightly controlled, and even the events were denied. More commonly, they put on a brave front to shield other family members from added burdens [14, 40].
S: It is painful and I try to conceal that my whole-body shakes. I don’t want my family and friends to see this. It really doesn’t affect them much, but rather myself when I’m on my own
It could be devastating to realize that by sparing each other their thoughts, feelings, and health concerns, they might inadvertently be facing their struggles alone.
C: I don’t know what they’re going through, and they don’t know what I’m going through!
Developing daily routine
Adapting to new routines represented a significant milestone in the recovery journey for both ICU survivors and caregivers. Some survivors firmly believed in the necessity of rigorous rehabilitation and adherence to medical advice, whereas others chose to proceed at a slower pace, with both finding their own rhythm. Caregivers acted as well-informed organizers, not only securing survivors’ medical appointments but also maintaining balance and order in the family’s practical and social life.
S: However, my head was as good as it could be, so I wanted to be independent. I keep on doing things all the time. To do some exercising—then you get things done, not just sit down and think
Goals had been shifted towards practicing functions to compensate for possible physical or cognitive shortcomings, adopting a learning-by-doing approach and intuitive trial-and-error [35, 38, 58]. This included adapting the home environment, using post-it notes, taking up leisure activities, and postponing chores [41, 47, 58, 59, 68].
S: Yes, I use post-it everywhere; otherwise I would forget
Seeking respite
Specifically, this coping strategy was interspersed throughout the caregiving process, especially when caregivers found it difficult to move forward with a sustained focus on caregiving. Setting boundaries with survivors about how much support they will provide [28, 32] could help caregivers shift their focus from the survivors’ needs to their own. To alleviate the burden of caregiving, they began to prioritize their own health and that of all family members, as well as pursue personal interests [30, 63]. In many cases, caregivers believed that respite programs and emotional detachment were beneficial [35, 43]. As expressed by the caregiver below:
C: You just give up and let things go at their pace
Discussion
This review synthesized challenges and coping strategies for recovery after discharge from the ICU for survivors and caregivers, highlighting the interactivity and independence between the two parties. For both ICU survivors and caregivers, a sense of self-disassociation predominated in the early stages of recovery from the ICU, stemming from limitations in physical, emotional, cognitive and social function and medical support. Roy stated that the sense of self is shaped by personal values and social perceptions [30]. Inconsistent perceptions around a particular role can result in role conflict. Therefore, grief over loss of identity can be superimposed by a lack of empathy and understanding from those around them, including within intimate survivor-caregiver relationships. Role conflict, on the other hand, imposes the harshness of empowerment. This is because ICU survivors and their families, who have different roles, place discordant emphasis on the autonomy that survivors should exhibit in managing their recovery tasks [48]. One trigger for these shared challenges may be the often unnoticed influence of external perspectives, whether well-intentioned or suspicious, which can undermine the internal recovery process that is more implicit. Given the subsequent plateau in emotional recovery post-ICU [55], interventions aimed at maintaining the internal recovery of mental health among ICU survivors and caregivers could be promising.
The ‘philosophical approach to life’ delineates how stressors formulate coping strategies by means of evaluation and value assignment [34]. Beginning with role re-anchoring, situational coping strategies were collaboratively applied by ICU survivors and caregivers. Among the adopted coping strategies, emotional coping is widely recognized by survivors and caregivers as an effective way to overcome difficult times, leveraging positive psychological capital (PsyCap). PsyCap is defined as an individual’s positive mental state (i.e., self-efficacy, optimism, hope, and resilience) during his/her growth and development [70]. These psychological resources align closely with those frequently reported by ICU survivors and caregivers in this article. Furthermore, PsyCap has been proven to be modifiable through training, suggesting clinical implications for optimizing the abilities of ICU survivors and caregivers to utilize resources during challenging times [71, 72]. In contrast, problem-focused coping, which involves efforts to develop adaptive skills and transitions toward an empowerment paradigm, is more appropriate for managing controlled stressors [7]. Notably, “being there with” was reiterated by ICU survivors and caregivers as a powerful motivator driving the journey of recovery, which in turn ensured that there was interactivity between ICU survivors and caregivers.
Our findings support the notion that “not all illness has the same impact on life” [73], emphasizing the importance of considering unique experiences of the same phenomenon through different lenses. Indeed, ICU survivors may grapple with unique challenges such as pre-morbidity and medication side effects, while caregivers endure the uncharted hardships of being shackled to caregiving duties. Survivors and caregivers often cope with their silent suffering by employing avoidance coping strategies, wherein they set aside their current emotions and mask inner vulnerabilities with a facade of normalcy. However, such avoidant coping (e.g. caregivers craving respite) may buffer against the distress that is contingent upon difficulties, which is consistent with evidence from other chronic conditions [16, 74]. Nevertheless, a notable disparity specific to the context of ICU discharge is the memory gap between survivors and their caregivers. Despite efforts to utilize ICU diaries as a means to reconstruct the shared experiences between survivors and caregivers during the ICU stay [75‐77], adequate platforms are often lacking to broach the differing experiences endured by survivors and their family members.
The interactivity and independence identified in our review resonates with the recent emphasis on family-centered interventions as the “F” of the “ABCDEF” Bundle for ICU survivor recovery [78, 79]. A theoretical foundation exists in which the navigation of illness is experienced together by survivors and caregivers. In addition to the stress and coping framework for dyads applied in this paper, the developmental–contextual model similarly indicates that couples share the illness experience and work together as dyad units to appraise, cope, and adjust to the impacts caused by the illness over time [14, 80]. Another strong argument for studying “dyads” in the context of ICU survivorship is the ‘spillover effect’ between survivors and informal caregivers, which impacts physical, psychological, and quality-of-life aspects, as evidenced by numerous quantitative dyadic studies [81‐83]. That’s why we look at ‘interactivity’ rather than simply ‘commonness’ to conform to the nature of interaction in the caring relationships. In other words, independence does not necessarily mean the separation of individuals but can be seen as complementary to the lack of interaction and communication, or as providing the independent space necessary for processing one’s own inner experiences.
Overall, our findings lay the foundation for dyadic interventions that go beyond simply treating caregivers as contributors to the recovery of ICU survivors. Efforts could be made to develop collaborative coping models that integrate mutual support [74]. A coping-congruence approach also underlines the matching response among dyads [17]. In addition, platforms for information exchange and honest communication between the two parties should be outlined [84], as communication serves as a remedy for reducing misunderstandings, bridging memory gaps, and enhancing reasonable delegation. Various effective interventions can serve as references, such as the Couplelinks online intervention designed to improve young couples’ conjoint coping [85], or self-directed approaches aimed at enhancing communication within dyads [86]. Moreover, interventions should ensure that both parties have independent space to clear their own minds, which implies the necessity of empowering both survivors and caregivers and fostering a dynamic balance between them [69].
The post-ICU recovery of survivors and caregivers is non-linear and fluid [13], marked by several pivotal moments that prompt the emergence of new life perspectives. This process involves continuously seeking solutions and juxtaposing the current state with the former nadir (i.e., admission to the ICU). In fact, we observed a cyclical pattern in which challenges are met with corresponding coping strategies, as opposed to the care of chronic illness, which is often described as “endless and desperate” [18]. Hence, health promotion programs can branch out to take advantage of this cyclical nature. For instance, PsyCap can be stimulated through positive feedback derived from the progress made during recovery.
Our findings regarding the effectiveness of coping responses in various contexts and stressor types offer insights into coping strategies that extend beyond simply addressing individual traits. Instead, they emphasize the importance of aligning individuals’ abilities with meaningful tasks and environments. For example, this meta-synthesis elucidated an accentuated situational strain accompanied by hypervigilance specific to ICU experience, leading to negative avoidance coping that could benefit from interventions such as cognitive reconstruction (e.g. cognitive-behavioral therapy) [87]. A thirst for understanding, attentive listening, and rapport establishment provides a blueprint for effective desensitization care [88]. It is essential to not overlook the necessity of supportive health care facilities and follow-up services [89]. We also call for research that is appropriately designed to uncover why some individuals resist help and that is longitudinally tailored to address their evolving needs and experiences.
Strengths and limitations
As stated, this meta-synthesis was the first to synthesize challenges and coping strategies during recovery from ICU discharge from a dyadic perspective, determining the interactivity and independence between ICU survivors and caregivers on the basis of extensive studies. By employing the dyadic stress and coping framework, the interpretation of the findings presented in this paper is more reasonable. In addition, the Critical Appraisal Skills Programme (CASP), as a quality assessment tool for qualitative studies, offers a structured framework for evaluating the rigor, credibility, and relevance of each included study. This ensures that the included studies are critically evaluated not only for methodological soundness but also for their contributions to the synthesis of meaningful and reliable conclusions [26]. However, this synthesis was limited by the scarcity of qualitative studies adopting a dyadic approach to investigate ICU survivors’ and their caregivers’ interactions. While we included studies that exclusively sampled either ICU survivors or caregivers, which may not have strictly adhered to a dyadic design, this method of literature screening substantially enriched the breadth and depth of the findings. The samples of included studies included predominantly White individuals from Western countries, potentially limiting the generalizability of this article’s findings to other racial groups (e.g. Asians, Blacks) or other countries (e.g. countries in East Asia, African nations). Additionally, the quality of studies included in the research warrants consideration because some studies did not meet certain criteria of the CASP quality assessment tool, which could affect the overall quality of evidence synthesis. Furthermore, with all but one of the articles reviewed from the past 15 years, the findings may be influenced by significant policy shifts over time, such as the integration of family-centered care practices. These evolving policies, alongside advancements in ICU nursing practices such as changes in staff-patient ratio, may affect ICU survivors’ and caregivers’ experiences of PICS or PICS-F. Therefore, these factors potentially limit the generalizability of the results. Finally, it is essential to periodically update the review to incorporate newly published research, so that the findings remain relevant, comprehensive, and applicable to current clinical contexts. This approach helps maintain the accuracy and timeliness of the review, addressing potential shifts in the evidence base over time.
Conclusions
This meta-synthesis identified the interactivity and independence of challenges and coping strategies for survivors discharged from the ICU and recovering at home and their caregivers. The findings of this study emphasized the duality and self-identity of recovery after ICU discharge for survivors and their caregivers. Both survivors and caregivers share challenges related to physical, psychological, and social aspects and those that arise from interactions. Moreover, they also recognized stressors unique to their respective roles. Similarly, while survivors and caregivers reciprocally support each other most of the time, there are instances where they require independent space. The comprehensive analysis presented in this review underscores the importance of dyadic interventions that address the needs of both ICU survivors and caregivers, fostering mutual support and personal growth. For example, implementing a collaborative coping model can enhance joint coping mechanisms, whereas a respite program may facilitate the release of burden.
Footnote: This figure demonstrated the four main themes and their sub-themes respectively. These are: Theme 1: interactivity of recovery challenges for ICU survivors and caregivers (sub-themes: Life was turned upside down, Situational overstrain, Isolation without compassion, Empowerment conflicts, Marginalized support); Theme 2: independence of recovery challenges for ICU survivors and caregivers (sub-themes: Recovery means silent suffering, Gap in memory, Sacrificing to caregiving); Theme 3: interactivity of recovery coping strategies for ICU survivors and caregivers (sub-themes: Reorientation of mindset, Cultivating inner power, Sharing burden with an open-ear, Going through thick and thin together, Negotiating care level); and Theme 4: independence of recovery coping strategies for ICU survivors and caregivers (sub-themes: Wearing a faked smile, Developing daily routine, Seeking respite). In the figure, the blue circle represents ICU survivors, while the orange circle represents caregivers. The overlapping area of the blue and orange circles signifies the interactivity of recovery challenges/coping strategies between ICU survivors and caregivers. Conversely, areas where the circles do not intersect denote the independence of recovery challenges/coping strategies between ICU survivors and caregivers.
Acknowledgements
Not applicable.
Declarations
Competing interests
The authors declare no competing interests.
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The interactivity and independence of Recovery challenges and coping strategies for ICU survivors and their caregivers: a systematic review and Meta-synthesis
