Abstract
Background:
Family caregivers of patients with severe acute brain injury (SABI) who commit to tracheostomy and/or percutaneous endoscopic/surgical gastrostomy for the patient often develop chronic emotional distress. To inform future interventions to mitigate this distress, we characterized the stressors and coping strategies of caregivers of patients with SABI with varying levels of emotional distress during the acute and postacute stages of treatment.
Methods:
We conducted semistructured interviews with family caregivers of patients with SABI around the time of neurological intensive care unit discharge (T1) and at 2-month follow-up (T2). All caregivers included in this current study completed the Hospital Anxiety and Depression Scale at T1 and/or T2. We then stratified transcripts by caregiver distress level, characterizing caregivers who scored > 11 on at least one Hospital Anxiety and Depression Scale subscale as “high distress” and ≤ 11 as “low distress.” We conducted deductive, conceptual content analysis to compare perceived stressors and coping strategies employed at both time points.
Results:
Caregivers in both strata reported many similar stressors at each time point, including ongoing uncertainty. However, there were also differences in stressors by level of distress and time point of assessment. At T1, high-distress caregivers reported pronounced stress related to navigating the health care system and communicating with providers, staff, and the patient. At T2, high-distress caregivers noted heightened difficulty with transitioning to long-term caregiving, co-occurring complex emotions, and communication with family and friends. Conversely, low-distress caregivers focused on challenges with team-based medical decision making at T2. Clear differences in coping strategies also emerged, such that high-distress caregivers relied primarily on avoidance at both points, whereas low-distress caregivers incorporated more problem-solving and self-care strategies.
Conclusions:
Psychosocial interventions for caregivers of patients with SABI are needed to reduce emotional distress. Skills should be applied to relevant topics based on time since neurological intensive care unit discharge and distress level. Skills should focus on reducing avoidance, promoting active coping, and targeting the perceived stressors specific to high-distress versus low-distress caregivers revealed here.
Keywords: Coma, Severe acute brain injury, Caregiver, Qualitative, Emotional distress
Introduction
Family caregivers of neurological intensive care unit (neuro-ICU) patients with severe acute brain injury (SABI)—including traumatic brain injury, intracerebral hemorrhage, subarachnoid hemorrhage, acute ischemic stroke, and hypoxic-ischemic encephalopathy after cardiac arrest—who decide to pursue tracheostomy and/or percutaneous endoscopic/surgical gastrostomy (PEG) experience elevated emotional distress (e.g., depression, anxiety, and posttraumatic stress symptoms) during the acute and post-acute stages of their loved one’s treatment [1–5]. This early emotional distress, when untreated, can become chronic after patients’ hospitalizations, placing caregivers at risk of burnout, poor quality of life, and health deterioration [1, 3, 5–12].
In a recent multisite qualitative study of ours of distressed family caregivers of patients with SABI, which recruited from 14 neuro-ICUs across the United States (see eAppendix Supplement for a list of sites), caregivers described 10 unique practical, social, and emotional stressors at the time of patients’ neuro-ICU discharge (e.g., including experiencing overwhelming emotions, a disrupted normality, an unmet need for information, and social isolation and loneliness; see Fig. 1 for the full list) [12]. Family caregivers also reported using eight different psychological and behavioral coping techniques, including some that are considered adaptive (e.g., problem solving and self-care) and others that can be maladaptive (e.g., avoidance) [12]. Understanding the relationship between degree of distress, intensity of these stressors, and coping strategies used over time can inform targeted interventions for caregivers’ emotional well-being [13].
Fig. 1.
Psychosocial stressors and coping strategies originally reported at baseline. In this study, we stratified caregivers by distress level (high vs. low) at baseline and follow-up and tallied unique experiences of each stressor and coping strategy between each stratum at both timepoints
In our prior study [12], we did not stratify caregivers’ stressors and coping strategies by their level of emotional distress, nor did we examine how their stressors and coping strategies evolved in the months following the patient’s discharge from the neuro-ICU. It is important to consider the post-ICU phase of SABI treatment and recovery in the design of psychosocial interventions for caregivers, given that the transition from hospital to home is a critical point during which caregivers of patients with SABI are particularly vulnerable to emotional distress [13, 14].
Using qualitative data from our prior study obtained from family caregivers at the time of neuro-ICU discharge [12], as well as additional data from 2-month follow-up interviews, this study aimed to understand potential differences in stress and coping by level of emotional distress (e.g., high vs. low). Because this was a qualitative exploratory study, we did not conduct hypothesis testing, but rather aimed to compare stressors and coping strategies as they occur in the acute and post-ICU phase of recovery, stratified by distress. Characterizing the stressors and coping strategies used by caregivers with high versus low emotional distress across phases of treatment in patients with SABI (e.g., at time of discharge from neuro-ICU and 2 months later) is critical not only for informing both the content (e.g., type of coping skills) and timing (e.g., hospital or later) of interventions aimed at addressing emotional distress among those most in need, but also for developing stepped care interventions of differing intensities that ensure caregivers are receiving psychosocial support optimized to their specific level of distress [15].
Methods
Study Design and Sample
The family caregivers in this current study were the same cohort of caregivers of patients with SABI recruited for our prior multicenter qualitative study, which itself used convenience sampling (see Table 1 for inclusion criteria). Patients associated with that prior study were admitted to 14 neuro-ICUs in the United States with coma (see Appendix Supplement for a list of sites). Coma was defined as a period of at least 24 h during which the patient had a Glasgow Coma Scale (GCS) score < 9 while not intubated or an inability to follow meaningful commands while intubated. All patients in that cohort underwent tracheostomy and/or percutaneous endoscopic gastrostomy placement.
Table 1.
Inclusion criteria
| Inclusion criteria |
|---|
| English-speaking |
| Confirmed by the primary clinical team as the primary caregiver for a patient who: |
| Is age 18 or older |
| Has been admitted to the ICU with a severe acute brain injury: |
| Ischemic stroke |
| Intracerebral hemorrhage |
| Subarachnoid hemorrhage |
| Traumatic brain injury |
| Hypoxic-ischemic encephalopathy |
| Will be undergoing tracheostomy and/or percutaneous endoscopic/surgical gastrostomy tube placement, or has already received one or both |
| In the judgment of the medical team, has had a Glasgow Coma Scale score < 9 while not intubated OR an inability to follow commands while intubated at any point during their hospitalization course for > 24 consecutive hours, felt to be due to the brain injury itself and not a confounding factor |
| Is still alive in the ICU when the clinical team approaches the primary caregiver about possible recruitment |
| Has a prognosis for survival of > 3 months and does not have a concurrent diagnosis of a terminal illness or injury |
ICU, intensive care unit
As described in our initial published thematic analysis [12], we initially interviewed patients’ caregivers and elicited their stressors and coping strategies at the time of patients’ neuro-ICU discharge (time point 1; baseline). In this current study, we additionally conducted 2-month follow-up (time point 2) interviews with this initial cohort. We then stratified the transcripts by caregiver emotional distress level (based on the Hospital Anxiety and Depression Scale [HADS]) at both time point 1 and time point 2 to identify variability in perceived stressors and coping strategies between strata that may inform future stepped care interventions.
The institutional review board at each site either approved study procedures or granted study exemptions. We recruited one caregiver per patient; for patients who had multiple caregivers, we prioritized recruitment of the “primary” caregiver as identified by the family. All enrolled caregivers provided written informed consent. We excluded caregivers of patients whose clinical teams did not expect their survival past hospitalization or who had concurrent diagnoses of terminal illness aside from their presenting brain injury.
Data Collection
For our initial published thematic analysis conducted at time point 1 [12], we developed a 60-min semistructured interview guide (see eAppendix Supplement), informed by Lazarus and Folkman’s stress and coping framework [16], via multidisciplinary team meetings among one neurointensivist and two clinical psychologists with expertise in ICU settings. The guide included open-ended questions aimed at eliciting themes within three domains: (1) the stressors experienced by caregivers, (2) their strategies for coping, and (3) their psychosocial support needs and preferences. We iteratively revised the interview guide after the first three interviews and subsequently developed an equivalent interview guide for use at time point 2.
At both time points 1 and 2, caregivers participated in interviews and were also asked to complete the HADS [17], a validated 14-item self-report tool that measures both anxiety and depression (seven questions each) in the past week. Questions for anxiety and depression were scored separately. Items are scored on a scale of 0–3, with total subscale scores ranging from 0 to 21. Scores > 7 are indicative of mild anxiety or depression, and scores > 11 are indicative of moderate or severe anxiety or depression.
For this study, we used available HADS scores to stratify caregivers by emotional distress at both time points. Specifically, for each time point, we categorized caregivers who scored ≥ 11 on at least one HADS subscale as high distress and those who scored below 11 as low distress.
Data Analysis
Quantitative Analysis
We calculated frequencies, proportions, and measures of central tendency to describe the sample’s characteristics, including the proportion of the sample that reported high versus low emotional distress (i.e., HADS ≥ 11 vs. HADS < 11) at each time point. Continuous variables examined included caregiver and patient age (mean and standard deviation) and caregiver HADS scores (median and interquartile range). Categorical variables included proportions of patient and caregiver sex, ethnicity, race, education level, as well as the caregiver’s relationship to the patient, patient’s admission diagnosis, patient’s tracheostomy and PEG status, and GCS at the time of baseline interview. We also calculated the proportion of caregivers that remained at high distress at both time points, remained at low distress at both time points, transitioned from high to low distress, and transitioned from low to high distress. Because this was a qualitative exploratory study with a small sample and high attrition at follow-up, we did not conduct quantitative hypothesis testing.
Qualitative Analysis
We conducted deductive, conceptual content analysis [18–20] of our stratified interviews (high and low distress) to identify differences in perceived stressors and coping strategies by strata and at different time points. Conceptual content analysis determines the presence and frequency of concepts and themes within a text.
First, we deductively coded all time point 2 transcripts according to the stressors and coping strategies present in our previously published time point 1 thematic analysis (time point 1; see Fig. 1 for full list). Then, we separated the transcripts into two strata (high and low distress) and two time points (time point 1 and 2):
High-distress caregivers at time point 1 (baseline)
Low-distress caregivers at time point 1 (baseline)
High-distress caregivers at time point 2 (2-month follow-up)
Low-distress caregivers’ at time point 2 (2-month follow-up)
Two authors (KM and AP) independently reviewed each coded transcript and tallied the presence of each unique stressor and coping style, noting any impressions about the intensity of the coded stressors and coping styles. They separately reviewed their overall tallies and impressions of all strata at both time points and noted summative inferences about the data.
They then compared the preliminary patterns they derived in order to limit subjectivity in the interpretation of the intensity of stress and coping in each transcript. They settled any discrepancies through discussion and came to a consensus on representative patterns of stressors and coping strategies between strata at both timepoints.
Results
Demographic Characteristics
In our initial published thematic analysis, 30 caregivers completed an interview at the time of consent, and 25 of these 30 elected to complete the HADS. The final sample for this study’s time point 1 thus consisted of these 25 caregivers.
At time point 1, 24 of the 25 caregivers provided demographic data: 20 (83%) were women, 4 (n = 23; 17%) were Hispanic, 8 (33%) identified with racially minoritized groups, and 16 (67%) reported fewer than 4 years of college (Table 2).
Table 2.
Participant and patient characteristics
| Characteristics | Baseline (n = 25) | 2 months (n = 11) |
|---|---|---|
| Caregiver characteristics | ||
| Age, mean (SD) | 45.2 (13.7) (n = 24) | 50.5 (16.3) (n = 10) |
| Female sex, n (%) | 20 (83.3) (n = 24) | 9 (81.8) |
| Hispanic ethnicity | 4 (17.4) (n = 23) | 0 (n = 10) |
| Race (n = 24) | ||
| White | 16 (66.7) | 10 (90.9) |
| Black or African American | 6 (25.0) | 1 (9.1) |
| Asian | 1 (4.2) | 0 |
| American Indian or Alaskan Native | 1 (4.2) | 0 |
| Education level | n = 24 | |
| Less than high school | 1 (4.2) | 0 |
| Completed high school or GED | 7 (29.2) | 3 (27.3) |
| Some college or associate degree | 8 (33.3) | 4 (36.4) |
| Four years of college | 3 (12.5) | 1 (9.1) |
| Graduate/professional degree | 5 (20.8) | 3 (27.3) |
| Relationship to patient | n = 24 | |
| Spouse | 7 (29.2) | 6 (54.5) |
| Child | 6 (25.0) | 0 |
| Parent | 6 (25.0) | 3 (27.3) |
| Sibling | 3 (12.5) | 1 (9.1) |
| Other | 2 (8.3) | 1 (9.1) |
| Hospital Anxiety and Depression Scale scores, median (IQR) | ||
| Anxiety subscale | 12 (5) | 9 (4.5) |
| Depression subscale | 10 (5) | 7 (2.5) |
| Patient characteristics | No. (%) | No. (%) |
| Age, mean (SD) | 49.5 (16.8) | 46.8 (18.6) |
| Female sex | 11 (44.0) | 4 (36.4) |
| Hispanic ethnicity | 4 (16.0) | 1 (9.1) |
| Race | ||
| White | 19 (76.0) | 10 (90.9) |
| Black or African American | 6 (24.0) | 1 (9.1) |
| Admission diagnosis | ||
| Traumatic brain injury | 8 (32.0) | 3 (27.3) |
| Intracerebral hemorrhage | 7 (28.0) | 4 (36.4) |
| Subarachnoid hemorrhage | 5 (20.0) | 3 (27.3) |
| Acute ischemic stroke | 4 (16.0) | 0 |
| Hypoxic-ischemic encephalopathy after cardiac arrest | 1 (4.0) | 1 (9.1) |
| Tracheostomy planned or performed | 21 (84.0) | |
| Percutaneous endoscopic gastrostomy placement planned or performed | 25 (100) | |
| Glasgow Coma Scale > 9 at time of interview | 17 (68.0) | |
GED, General Education Development, IQR, interquartile range, SD, standard deviation
Seventeen of the 25 patients (68%) had recovered to a GCS of 9 or higher when discharged from the neuro-ICU. At the time of study enrollment, 21 (84%) patients had a tracheostomy and PEG planned or performed, and the other 16% had PEG only.
Eleven caregivers participated in 2-month interviews and also completed the HADS at time point 2. Of these 11 caregivers, 1 had elected not to provide HADS data at time point 1. The remaining 10 were interviewed and completed the HADS at both time points. Of these 10 caregivers, 3 remained at high distress, 2 remained at low distress, and 5 transitioned from high to low distress. The 11 caregivers at time point 2 were mostly women (82%) and predominantly White (91%), with the majority (64%) reporting fewer than 4 years of college.
Stratification by Emotional Distress
At time point 1, 18 of the 25 (72.0%) caregivers fell into the high-distress category (either HADS subscale score ≥ 11) (Table 2). Of those with high distress at time point 1, the median GCS of the patient was 9.5, whereas for the low-distress category, the median GCS of the patient was 10. At time point 2, 4 of the 11 (36.4%) caregivers were categorized as high distress (either HADS subscale score ≥ 11). We did not have the GCS of the patients at time point 2.
Qualitative Results (See Supplementary Materials)
Baseline: Stressors
At baseline, both strata of caregivers experienced all 10 stressors derived from our initial published thematic analysis, including ongoing uncertainty [12]. However, a larger subset of the high-distress caregivers described heightened difficulty with decision making and navigating the health care system, communicating with providers and staff, and the inability to communicate with the patient.
Difficulty with decision making encompassed both the pressure beforehand and the consequences after, the latter of which is represented by the following quote:
“I just see the backlash from those decisions, because with the feeding tube in her stomach, every time I see her now, I have to see her in pain. [And after] the approval for the trach, every time I see her and she coughs, I have to live with that image in my mind because I told the doctor to do it…So…I have to live [with] and I have to see the results of my decision making. (Caregiver identifier [ID] 41)”
Frustrations surrounding communication with hospital providers and staff more markedly contributed to high-distress caregivers’ difficulty with navigating the health care system:
“We’d call and talk to the nurses, and some of the nurses contradicted what the doctors were saying, some of the nurses contradicted what the other nurses said, we had nurses that would tell us things that contradicted what was literally written on her careboard on the wall—which made us very frustrated and confused because none of us have gone through anything like this before. (Caregiver ID 24)”
High-distress caregivers also particularly struggled with their inability to communicate with the patient: “I keep hoping [that] when I walk in the hospital, he’s going to be able to speak and say something. That makes it really hard. Like if [only] he could just tell us what he’s thinking, or what he’s feeling” (Caregiver ID 25).
Follow-Up: Stressors
At the 2-month follow-up, both strata experienced a similar degree of most stressors. However high-distress caregivers experienced more pronounced difficulty transitioning to caregiving, dealing with ongoing uncertainty and complex emotions, and communicating with family and friends. Conversely, low-distress caregivers more frequently reported difficulty navigating team members among the health system.
High-distress caregivers appeared to have difficulty with the abrupt nature of transitioning to caregiving, as illustrated in the following quote: “Going from not knowing if she was going to live, to getting on the road to recovery, I think, just [that] transition was so severe and quick for me” (Caregiver ID 47).
High-distress caregivers’ particular difficulty with persistent uncertainty and co-occurring complex emotions at this time point is well illustrated by the following two quotes: “I’m a type A personality, and I like to be in control. And so, being told that I had to have patience and wait it out… I mean, the fear of the unknown sort of takes over at times, you know what I mean? You know, everyone’s telling you to sort of have patience, [but] I just couldn’t stop thinking about the what-ifs, or, you know, what if he never wakes up” (Caregiver ID 19); “It is hard because nobody can really tell you where they’re going to be in the next few months … so you can torture yourself with it” (Caregiver ID 53).
High-distress caregivers discussed particular difficulty with communicating and interacting with their family and friends, especially when having to repeatedly explain their loved one’s current status: “We [are] so tired of people going, ‘How’s [the patient]? What’s going on with [the patient]?’ To have to go over, and over, and over, it is so hard and upsetting” (Caregiver ID 53); “I find myself not wanting to get together with people because I don’t want to depress them” (Caregiver ID 79).
None of the high-distress caregivers reported difficulty with making medical decisions at follow-up; in contrast, among low-distress caregivers, both the presence and intensity of distress surrounding medical decision making were increased at 2 months. Each of the seven low-distress caregivers endorsed difficulty with navigating team members within the health care system, particularly when it came to medical decision making:
So, like sort of identifying that you have a neurosurgeon, you have the critical neuro-ICU team, what the care team looks like in long-term acute care; what the care team looks like in inpatient rehab; what the care team looks like in the home setting, whether you have in-home or outpatient; the role of a neuropsychologist, the role of neurology, the role of a physiatrist—sort of identifying those key players along the continuum of recovery progression would have been helpful for me, because I feel like I had to do a lot of like work to find these people. (Caregiver ID 9)
Baseline: Coping Strategies
At baseline, the vast majority of high-distress caregivers engaged in avoidance and distraction, whereas low-distress caregivers tended toward problem solving and cultivating positive emotions.
High-distress caregivers’ tendencies toward avoidance appeared to ineffectively alleviate their distress and/or lead to further problems, as illustrated in the following quotes: “I don’t have any stress-relieving techniques or anything, so… I don’t do anything to deal with [the stress]” (Caregiver ID 37); “I was kind of ignoring a lot of it. I wasn’t eating right, I wasn’t showering like I should, I wasn’t taking care of myself or the house. I was just kind of in autopilot… And I had some unhealthy coping habits. I was overeating and eating just absolutely crappy food. And you know, pretty snippy with my partner, and just kind of not doing anything and just kinda wanted to watch TV and zone out and not think about anything” (Caregiver ID 24).
Conversely, low-distress caregivers’ approach toward problem solving and cultivating positive emotions appeared to limit feelings of overwhelm:
I have that motto in my head already, accepting things that you can’t change … I’m not going to stay stuck on [this situation] because there’s nothing that I can physically do or say or anything to change it, so I’m not going to dwell … [and] I write a lot of things down. I like the whole pros-and-cons thing. I will write a situation down, and I will write down everything bad, and I’m writing down everything good … it helps you to realize, listen, you can’t change that, so you need to think of ways around it. (Caregiver ID 55)
There were no other divergent patterns in coping between strata at baseline.
Follow-Up: Coping Strategies
Differences in coping strategies between both strata endured at 2-month follow-up. Specifically, low-distress caregivers’ coping continued to revolve around problem solving and maintaining a positive outlook, along with some self-education. High-distress caregivers, instead, continued to be mainly avoidant, often distracting themselves from the emotional difficulty of their situation through methods such as keeping busy and compartmentalizing, or turning away from other, adaptive coping strategies. None of the high-distress caregivers pursued self-education as a means of coping. Their avoidant behaviors seemed to have deleterious effects on stress tolerance and/or prolonged emotional processing as illustrated by the following quotes: “…lately [I’ve been consuming] a lot of coffee and cigarettes … or I’ll just putter around nervously and clean the house and just go for a walk or something to distract myself … it may just delay [the stress]” (Caregiver ID 47); “I wish I could get into a better routine for each day because some days I get up and I can’t – I just sit on the couch and drink coffee for two hours because I just can” (Caregiver ID 53).
However, notably, high-distress caregivers also began to practice healthy lifestyle behaviors, practices that the low-distress caregivers had already been doing 2 months prior: “I always try to do a lot, [but] I’m giving myself permission to take breaks. … I take a break from going to the hospital, mostly” (Caregiver ID 79); “I’m finally learning how to take care of myself.” (Caregiver ID 53).
In addition, all but one caregiver across both strata reported some reliance on family and social support for coping.
Discussion
In this qualitative multicenter study, we characterized acute and postacute stressors and coping styles of caregivers of patients with SABI based on distress level. Although caregivers in both strata appeared to have some similar stressors at both time points (with some notable differences), high-distress caregivers overall relied on avoidant coping strategies, whereas low-distress caregivers incorporated more problem solving and self-care in addition to avoidance. When considered in the context of our initial qualitative study [12], early psychosocial skills-based interventions could provide an opportunity for caregivers to learn additional, adaptive skills to enable healthy coping in the long-term.
High-distress and low-distress caregivers endorsed some similar stressors during hospitalization and through 2-month follow-up. However, at baseline, high-distress caregivers initially reported a heightened degree of stress from navigation of the health care system and communication, or lack thereof, with hospital providers, staff, and the patient. At follow-up, their chief stressors included transitioning to caregiving, persistent uncertainty, communicating with their wider social networks, and processing co-occurring complex emotions. Caregivers who were low distress nevertheless shared some struggles with those with high stress, such as increased uncertainty during the patient’s hospitalization and medical decision making at follow-up, suggesting that these challenges are ubiquitous and perhaps not related to how an individual is coping. It is possible that all caregivers may benefit from having a care coordinator who regularly assesses caregivers’ strain, particularly related to uncertainty and decision making, and provides suitable support accordingly [21].
Based on these findings, psychosocial interventions could focus on some similar skills for the high-distress and low-distress caregiver populations (e.g., problem solving), while also tailoring skills to the varying topics and challenges experienced by each stratum. Our findings showcase the multiple layers of influences (e.g., psychologic, social, systemic, etc.) on caregivers’ experiences, behaviors, and well-being, suggesting the need for a more ecological approach to designing these interventions [22]. Differences in timing should also be considered, for example, initial sessions for high-distress caregivers (i.e., at hospitalization or immediately after discharge) could consider focusing on providing education, facilitating communication with medical teams, and coping with the noncommunicative patient. Later sessions could focus on coping with role changes and overwhelming emotions, effectively using social support, and dealing with ongoing uncertainty. In contrast, for caregivers with relatively low levels of emotional distress, discussions about coping with uncertainty during the patient’s hospitalization may be prudent, followed by a focus on processing the impact of medical decision making and navigating medical team members in the subsequent months. A stepped care model whereby low-distress caregivers receive a brief in-hospital intervention and high-distress caregivers receive a higher treatment dose may be considered as ways to prevent chronic symptoms after discharge while managing resources and cost.
To cope with their stressors, both high-distress and low-distress caregivers used avoidance and distraction to some extent, although low-distress caregivers used more problem solving, cultivating positive emotions, and self-care during the acute phase of the patient’s hospitalization. High-distress caregivers instead primarily relied on avoidance and distraction in the hospital and during the months that followed. These findings provide further nuance to our baseline interviews [12]; whereas avoidance and distraction may serve as a protective buffer in the acute phase of recovery, they may prevent adaptive processing of stressful events, limit caregivers’ capacity for distress tolerance, and reduce the likelihood for emotional recovery [23–25]. This has important implications in the development and/or adaptation of psychosocial interventions for this population, as it suggests that caregivers under high distress may struggle to develop adaptive coping strategies without skill-building interventions. Avoidant coping has a robust link to caregiver burden and health problems, so it represents an important intervention target and, as demonstrated by this study, can be targeted at multiple time points in the caregiving continuum [26, 27]. Interventions for high-distress caregivers should focus on building adaptive coping strategies, improving distress tolerance skills, and describing the negative effects of chronic avoidance early in order to move caregivers toward more long-term, cognitive coping strategies such as problem solving.
In the interim, while tailored psychosocial interventions undergo development, neuro-ICU staff can consider normalizing the experience of prolonged uncertainty with caregivers of patients with SABI, as well as stress the importance of engaging in basic self-care and taking time for self as a means to separate from constant worry and arousal. Indeed, prior work in the neonatal ICU has indicated that parents tend to fare better emotionally when encouraged by trusted staff to take such measures [28]. Further, clinical social workers and psychiatric nurse practitioners can consider providing brief therapy and connect caregivers with longer-term therapists in the community. Finally, peer support groups, either in-person or virtual, can provide another layer of mental health resource for caregivers via connecting through shared experience, normalizing stressors, and discussion of adaptive coping skills [29].
Limitations
We identified several limitations. First, our convenience sample, although composed of participants from diverse geographical locations within the United States, is not representative of caregivers caring for patients with SABI worldwide. Approaching life-and-death decisions for noncommunicative patients varies across the world, and although the decision to continue care in the United States often falls on the caregiver, in other countries this responsibility falls on the medical teams, which may in turn impact how caregivers experience acute and chronic stress. Second, there was attrition between baseline and follow-up, which may have led to selection bias even within the United States-based sample. In addition, only a small subset of participants who were interviewed also completed the HADS at each time point, which impacts the generalizability of our findings and limits our ability to note longer-term patterns in stress and coping among those whose level of stress remained constant, increased, or decreased over time. It is possible that those who dropped out at 2 months could have been more distressed, given the high degree of avoidance at baseline. Third, we did not query caregivers on contextual factors that may have impacted their experience of stress and coping (e.g., perceived quality of shared-decision making, family insurance coverage, socioeconomic status, religion and spirituality, preexisting anxiety and depression, etc.) if they themselves did not raise them; that said, future research should consider exploring the interaction of such factors, both qualitatively and quantitatively. Nevertheless, our findings provide an important glimpse into the vulnerability and resilience factors of this understudied population.
Conclusions
High-distress and low-distress caregivers encountered similar stressors during hospitalization of patients with SABI and at follow-up, although high-distress caregivers reported a particularly greater degree of stress in several specific domains (e.g., navigating the health care system, transitioning to caregiving, handling uncertainty). High-distress caregivers relied on avoidance at both time points, which may have prolonged their distress, whereas low-distress caregivers engaged in adaptive coping strategies earlier on. Future interventions should encourage adaptive coping strategies early during the hospitalization of the patient with SABI and promote ecological changes at multiple levels of influence on caregivers’ well-being (e.g., individual, family, institutional) to best support caregivers in the short and longer term.
Supplementary Material
The online version contains supplementary material available at https://doiorg/10.1007/s12028-025-02294-1.
Acknowledgements
This work was supported by the Department of Neurology Research Fund at the Yale School of Medicine awarded to David Y. Hwang, a grant from the National Center for Complementary and Integrative Health awarded to Ana-Maria Vranceanu (1K24AT011760-01), and a grant from the National Institute of Nursing Research awarded to Ana-Maria Vranceanu (5R01NR019982-02).
Footnotes
Conflicts of Interest
Our authors disclose no conflicts of interest.
Ethical Approval
We confirm that the institutional review board at each site either approved study procedures or granted study exemptions.
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