Psychosocial Support Needs and Preferences Among Family Caregivers of ICU Patients with Severe Acute Brain Injury: A Qualitative Thematic Analysis

Abstract

Background:

Family caregivers of patients with severe acute brain injury (SABI) are at risk for clinically significant chronic emotional distress, including depression, anxiety, and posttraumatic stress. Existing psychosocial interventions for caregivers of intensive care unit (ICU) patients are not tailored to the unique needs of caregivers of patients with SABI, do not demonstrate long‑term efficacy, and may increase caregiver burden. In this study, we explored the needs and preferences for psychosocial services among SABI caregivers to inform the development and adaptation of interventions to reduce their emotional distress during and after their relative’s ICU admission.

Methods:

In this multicenter longitudinal qualitative study, we conducted semistructed interviews with SABI caregivers at two time points: during their relative’s ICU admission (n = 30) and 2 months later (n = 20). We analyzed qualitative data using a hybrid of inductive and deductive analytic techniques. We recruited family caregivers of patients with SABI from 14 US neuroscience ICUs. We conducted interviews over live video. Our convenience sample of SABI caregivers (n = 30) was recruited through referral by medical teams and nursing staffs across participating neuroscience ICUs. Caregivers included spouses, children, parents, and siblings to patients with SABI.

Results:

We identified themes and subthemes related to participants’ preferences for (1) the content of psychosocial support services and (2) the delivery and implementation of psychosocial support services. Findings revealed an unmet need for psychosocial support around the time of ICU discharge and 2 months later, including information to understand their loved one’s condition and guide difficult decision‑making, education regarding how best to communicate with the patient’s care team and other family members, and emotional and behavioral coping skills.

Conclusions:

Our findings provide specific recommendations to justify and inform the development and adaptation of psychosocial support services for SABI caregivers for delivery in the ICU and after discharge.

Introduction

Severe acute brain injury (SABI)—such as ischemic stroke, intracerebral hemorrhage, traumatic brain injury, or hypoxic-ischemic injury—is sudden and often catastrophic for both patients and their families [1]. Intensive care unit (ICU) patients with SABI are severely neurologically impaired, including reduced level of responsiveness and ability to communicate, often relying on tracheostomy and/or gastrostomy tube placement to survive. Their family caregivers bear responsibility to make decisions on their behalf while also grappling with their loved one’s uncertain survival and recovery trajectory, including potential lifelong changes in physical and cognitive functioning [2–5].

SABI family caregivers report an immense sense of being overwhelmed, an unmet need for information, ambiguous loss, inability to engage in basic self-care, and social isolation and loneliness [6–10]. As a result, SABI caregivers are at high risk for clinically significant chronic emotional distress, including posttraumatic stress, depression, and anxiety [11–15]. Caregivers’ emotional distress can spill over to affect their caregiving competence, the care recipient’s health and recovery, and their broader family’s well-being and resilience [16, 17].

National research workgroups have recently drawn attention to the psychosocial distress of SABI caregivers and the unmet need for effective interventions [1]. A 2021 systematic review identified 22 previously developed psychosocial interventions for caregivers of general ICU patients (not SABI-specific), but none demonstrated long-term improvements in depression, anxiety, or posttraumatic stress, and many were found to increase caregiver burden [18]. Few ICU interventions have been specifically tailored for the unique needs of SABI caregivers (e.g., uncertain survival and recovery trajectory of the patient), and existing interventions focus largely on crisis management and medical decision-making during the first 48 h of admission [2, 3, 19, 20]. There is a clear need for psychosocial interventions for SABI caregivers that provide support from acute hospitalization through discharge, without increasing burden. Psychosocial interventions that show promise in preventing caregiver emotional distress beginning in other inpatient settings [21, 22] would need to be adapted to address the unique needs of SABI caregivers to be efficacious and implementable.

In this study, we explored the needs and preferences for psychosocial services among SABI caregivers to inform the development and adaptation of interventions to reduce their emotional distress and improve their adaptive coping abilities, both during and after their relative’s ICU admission.

Materials and Methods

Study Overview

In this multicenter longitudinal qualitative study, we recruited family caregivers of patients with SABI from 14 US neuroscience ICUs in the fall of 2020. We conducted semistructured qualitative interviews over secure videoconferencing to explore caregivers’ needs and preferences related to psychosocial support services. We conducted interviews at two time points: first, within a week of transfer out of the ICU, and second, 2 months later at follow-up. We analyzed the qualitative data thematically using a hybrid inductive–deductive approach. The institutional review boards at all sites either approved study procedures or granted study exemptions. We conducted all procedures in accordance with the ethical standards of all participating institutional review boards and with the Helsinki Declaration of 1975. We follow the Consolidated Criteria for Reporting Qualitative Research reporting guidelines [23].

Participants

We recruited caregivers of patients with SABI through referral and signed informed consent obtained by medical teams and nursing staff across 14 neuroscience ICUs to create a convenience sample. All caregivers were 18 years or older and English-speaking. We included caregivers of patients who met the following criteria:

1. Age 18 years or older;

2. Admitted with ischemic stroke, intracerebral hemorrhage, subarachnoid hemorrhage, traumatic brain injury, or hypoxic-ischemic encephalopathy;

3. For a period of at least 24 h at some point during the ICU admission, had either a Glasgow Coma Scale score < 9 while not intubated or an inability to follow meaningful commands while intubated (thought to be due to structural brain injury by the medical team, and not by confounding medications or uncontrolled seizures);

4. Remained incapacitated and had undergone, or were definitively scheduled for, tracheostomy and/or percutaneous endoscopic/surgical gastrostomy tube placement;

5. And were either still admitted to the ICU awaiting upcoming transfer to a lower level of care or had transferred out of the ICU for less than 7 days.

For patients with more than one family member in the ICU, the “primary” caregiver as identified by the family was prioritized for recruitment. We excluded caregivers of patients who were not expected by the clinical team to survive their hospitalization. Within these eligibility criteria, medical and nursing contacts at each site were given the liberty to approach any family member for recruitment, including taking into consideration caregivers’ expected willingness to participate. We stopped recruitment when thematic saturation was reached for the first interview and contacted all participants after 2 months for the second interview. Participants were contacted up to five times at each interview time point, including at least three times by phone, one time by email, and one time by text (for caregivers that consented to receiving texts), before being considered unresponsive or lost to follow-up.

Data Collection

We distributed an electronic survey through Research Electronic Data Capture [24] to all participants to collect data on demographics. Our semistructured interview guide (eAppendix Supplement) was developed by a multidisciplinary team including a neurointensivist (DYH) and two clinical psychologists (SB and AMV) with expertise in ICU settings. The interview guide for the first time point contained open-ended questions about caregivers’ experiences in the ICU, experiences engaging in any type of psychosocial support, psychosocial support needs, and preferences related to types and delivery format of psychosocial support services in which they would be interested. At the second time point, we probed about the same topics covered in the first interview and any changes in the caregivers’ perspectives given the additional time elapsed since the ICU admission. Both interviews lasted about an hour. A PhD-level female clinical psychologist (SB) with expertise in caregiver interventions conducted the first three interviews. The remaining interviews were conducted by experienced clinical research coordinators with training and ongoing supervision from the same PhD-level clinical psychologist. Interviewers had no previous relationship or communication with participants. We audio recorded and transcribed all interviews verbatim.

Data Analysis

Our multidisciplinary team (DYH, MR, SB, KM, RK, and JK) coded and interpreted the qualitative data using a hybrid of inductive and deductive analytic techniques [25]. We developed a coding framework for qualitative analysis informed by our research question and based on an open-coding procedure. We reviewed the first five interview transcripts and identified conceptual labels (codes) to organize the data relevant to psychosocial treatment needs and preferences. After we collaboratively revised the list of codes, three independent coders (KM, RK, and JK) applied the coding framework to all transcripts from both time points using NVivo. We resolved coding disagreements through discussion among the coders as well as consultation with the broader analysis team. Reviewing the coded data, we collaboratively identified findings that characterized participants’ psychosocial treatment needs and preferences. We extracted findings and iteratively revised them along two levels of granularity (themes and subthemes). We iteratively revised the list of themes and subthemes and organized them within broader conceptual domains.

Results

Sample Recruitment

We contacted 64 caregivers, of whom 22 (34%) declined participation, 4 (6%) did not respond, and 8 (13%) did not respond after providing written consent to participate, resulting in a convenience sample of 30 caregivers for the first interview. Of these 30 caregivers, 6 were referred from the University of Maryland Medical System, 5 from Yale New Haven Hospital, 4 from UMass Memorial Medical Center, 3 each from Rhode Island Hospital and Hartford Hospital, 2 each from Beth Israel Deaconess Medical Center and Mayo Clinic Jacksonville, and 1 each from the remaining study sites. At 2 months, one declined participation, and 9 were lost to follow-up, resulting in a subsequent sample of 20 caregivers who additionally participated in the second interview.

Participant Characteristics

Table 1 summarizes the characteristics of the study participants, as well as the patients for whom our participants were relatives.

Table 1.

Participant and patient characteristics

	Baseline	2 months
Caregiver characteristics	n = 30	n = 20
Age, mean (SD)	47.2 (13.6) (n = 28)	51.6 (13.4) (n = 18)
Female sex, n (%)	23 (80) (n = 29)	14 (74) (n = 19)
Hispanic ethnicity, n (%)	4 (15) (n = 26)	2 (12) (n = 17)
Race, n (%)	n = 28	n = 19
White	19 (68)	16 (84)
Black or African American	7 (25)	3 (16)
Asian	1 (4)	0
American Indian or Alaskan Native	1 (4)	0
Education level, n (%)	n = 28	n = 19
Less than high school	1 (4)	1 (5)
Completed high school or GED	9 (32)	6 (32)
Some college or associate’s degree	9 (32)	7 (37)
Four years of college	4 (14)	2 (11)
Graduate/professional degree	5 (18)	3 (16)
Relationship to patient, n (%)	n = 29	n = 19
Spouse	8 (28)	7 (37)
Child	8 (28)	2 (11)
Parent	7 (24)	6 (32)
Sibling	4 (14)	2 (11)
Other	2 (7)	2 (11)
Patient characteristics
Age, mean (SD)	50.4 (17.9)	47.1 (17.1)
Female sex, n (%)	14 (47)	10 (50)
Hispanic ethnicity, n (%)	4 (13)	3 (15)
Race, n (%)
White	23 (78)	16 (80)
Black or African American	7 (23)	4 (20)
Admission diagnosis, n (%)
Traumatic brain injury	9 (30)	6 (30)
Intracerebral hemorrhage	7 (23)	4 (20)
Subarachnoid hemorrhage	6 (20)	4 (20)
Arterial ischemic stroke	6 (20)	4 (20)
Hypoxic‑ischemic encephalopathy	2 (7)	2 (10)
Tracheostomy planned or performed	25 (83)	18 (90)
Percutaneous endoscopic gastrostomy placement planned or performed	29 (97)	19 (95)
Glasgow coma scale ≥ 9 at the time of study enrollment	14 (47)	12 (60)

GED General educational development, SD standard deviation

Qualitative Findings

We identified domains, themes, and subthemes related to participants’ preferences for (1) the content of psychosocial support services (Table 2) and (2) the delivery and implementation of psychosocial support services (Table 3). In the following section, we describe domains and themes and present illustrative quotations for a selection of key subthemes. We found that perspectives between the two time points of data collection were largely overlapping, and we note in-text where we observed key differences.

Table 2.

Preferences for psychosocial service content

Domains	Themes and subthemes
Informational support and connection to resources	Support to understand and process information about patient’s condition and medical care Medical jargon and key terms about patient’s condition Medical interventions patient is receiving Navigating ICU setting and care team structure Patient’s prognosis and possible long-term outcomes Connection to information and resources for practical needs Supportive prompting to think about practical needs and identify resources Managing insurance, fnancial, and legal issues Arranging for patient’s future care and/or transition out of the ICU Finding mental health resources for caregiver, patient, and family members
Practical, emotional, and behavioral coping skills	Making difcult decisions regarding patient’s medical care and treatment goals Making decisions about patient’s treatment goals in line with values and patient preferences Deciding among medical care and treatment options for patient Navigating end-of-life decisions and conversations Communicating with patient about medical condition, care, and decisions Adjusting to new caregiving role and increasing responsibilities Providing care and interacting with patient to support their recovery Providing emotional support to patient Managing daily responsibilities (e.g., childcare) amid new caregiving responsibilities Finding and protecting time for basic self-care Strengthening social support and communication within relationships Advocating for support as needed from medical care team Sharing information with family members and social network about patient’s condition Navigating difcult conversations with family members regarding patient and care Soliciting or shaping social support to better meet caregiver’s needs Communicating about emotional experience to loved ones Coping with difcult emotions Recognizing, understanding, and feeling the range of difcult emotions Coping with sense of overwhelm and depletion Tolerating uncertain futures and adjusting expectations for what is ahead Coping with perceived helplessness in connection to patient’s condition and pain Processing grief and sense of loss Coping with feeling alone Overcoming guilt or resistance to self-care Cultivating positivity and optimism

ICU intensive care unit

Table 3.

Preferences for psychosocial service delivery and implementation

Domains	Themes and subthemes
Promoting caregiver uptake of psychosocial services	Reasons for caregiver hesitancy to engage in services Discomfort talking about emotions or disinterest in emotional support Perceived lack of time and sense of overwhelm Feeling adequately prepared and supported by medical care team Strategies to encourage caregiver uptake of services Make caregivers feel cared for and consistently checked-in on Ensure comfort and trust with psychosocial service provider Provide clear, specific information on what service will entail Streamline enrollment process to be as easy as possible for caregiver Include other family members in services in addition to primary caregiver Make services free or financially accessible
Structure and scheduling of psychosocial services	Timing of service delivery Preference for early support given intensity of experience and demands on caregiver Preference for later support given initial sense of overwhelm and immense uncertainty Interest in continuity of support after discharge and over time Preferences related to scheduling sessions Ensure session times fit around caregiver work schedule and responsibilities Consider session times close to but outside of hospital visiting hours Schedule all sessions upfront rather than one by one Flexibility with last minute changes for unexpected conflicts or changes in emotional state Organization of content Centralize information and resources to be easily accessed and shared electronically Start with skills most essential for coping in hospital and planning-related topics for later Personalize topics and order of topics to each caregiver
Delivery modality of services	Perspectives on in-person sessions in the hospital Interest in in-person sessions to establish rapport and relationship Need to accommodate unpredictable schedule of when doctors stop by Help with transportation to hospital could promote engagement Perspectives on virtual services Perceived accessibility and flexibility of virtual services Discomfort with video calls, especially for personal conversations Difficult to do remote sessions from home given childcare or other responsibilities Need for reliable and adequate internet connectivity and devices Technical support could promote engagement
Preferences related to psychosocial service providers	Psychosocial service provider characteristics Desire for psychosocial service providers to be knowledgeable about patient’s condition Appreciate meaningful interest and individualized attention from providers Appreciate clear and straightforward communication style Communication with service providers Value being checked-in on regularly Appreciate providers who are reliably reachable in case of crises or urgent questions Need reminders for sessions, specifically text messages preferred Accessibility in languages other than English Desire to connect with peers (i.e., caregivers with similar experiences) Desire for empathy and emotional support from peers who genuinely understand experience Desire to learn from how other caregivers coped with the challenges and survived

Preferences for Psychosocial Service Content

Informational Support and Connection to Resources

Severe acute brain injury caregivers endorsed a need for support in understanding complex medical information about their relative’s condition and care. In particular, caregivers expressed an urgent need for support in understanding the patient’s prognosis and processing the possible long-term outcomes. For example, one caregiver wanted to hear, “Here are your pathways…he will either come out of it or he won’t. If he does come out of it, it’ll be a minimally conscious state. Here’s the coma scale, here’s the Rancho scale…he’ll either go to long-term acute care or he’ll go to inpatient rehab.” Additionally, caregivers communicated a sense of being overwhelmed by the practical matters they had to manage, such as the insurance, legal, and financial issues related to the patient’s injury. Participants noted the need for guidance in identifying appropriate resources to navigate these needs as well as emotional support in that process. For example, one caregiver desired to receive “a list of questions that you might want to go over with her care team or a social worker…stuff that you don’t necessarily think of in the moment, just ‘cause you’re super overwhelmed and running on empty.”

Practical, Emotional, and Behavioral Coping Skills

Participants endorsed a need for support in strengthening a variety of skills needed to manage their relative’s illness and their new role as a caregiver. Of central importance, caregivers cited a need for support in decision-making skills, including how to weigh among treatment and care options and make decisions in line with their own and their relative’s values. Given that these decisions are highly emotionally charged, caregivers endorsed a need for help in separating their emotions from their values and other relevant factors: “People are probably really overwhelmed with their feelings right now, it’s hard to make decisions…. So just learning how to make evidence-based decisions and disconnect your feelings from it I think would be helpful.” Additionally, caregivers desired skills training related to their new caregiving responsibilities and how to best interact with their relative to promote their safety, well-being and/or recovery: “It’d be nice if we had just like a ‘hey, try to count with her,’ or ‘hey, stretch her hands out like this,’ or literally anything to kind of know what we can do to help.”

Caregivers also endorsed a strong need for social and behavioral skills to cope with their own stress and difficult emotions; in particular, coping with feeling overwhelmed, helpless, and grief. As one participant described, “Going through the beginning…I was on autopilot. Retrospectively, I can just kind of see the different stages I was going through and recognize what I was feeling, but I was secondary to the bigger picture.” Another described, “Grieving who she was, and somebody who isn’t gone, is super difficult.” Participants desired guidance in how to communicate with their relative’s care team and friends and family to promote understanding and minimize conflict. Caregivers also needed help in overcoming their guilt or resistance to engage in self-care: “Sometimes, you want to manage it all, be in crisis management, and you need that reminder that it’s okay for you to feel all these emotions and care for yourself.”

Preferences for Psychosocial Service Delivery and Implementation

Promoting Caregiver Uptake of Psychosocial Services

Participants reported key reasons for potential caregiver hesitancy to engage in psychosocial support services, such as discomfort talking about emotions and perceived lack of time. To address these barriers, participants recommended ensuring comfort and trust between service providers and caregivers, as well as making sure caregivers understand specifically what psychosocial support services will entail. Participants also underscored the value in helping caregivers feel cared for and checked-in on: “It’s very critical to have someone there that says, ‘Hey, let me just walk you somewhat this way. You need to talk to me…. I’m here for you.’”.

Structure and Scheduling of Psychosocial Services

Participants expressed diverging opinions regarding the most helpful time to enroll caregivers in support services. Some participants described that it would be very difficult to engage in support services early on during their relative’s ICU admission given their initial sense of being overwhelmed and the immense uncertainty around their relative’s condition: “In a critical care setting, I really just wanted to make sure [the patient] was good, and everything else was kind of on the backburner.” Other participants described that they needed support early on in their relative’s admission given the intensity of the experience and the decision-making demands placed on them. Of note, the need for support earlier on was particularly emphasized by participants during the follow-up interviews: “I feel like while my husband was in the operating room…support could have started then…. I thought that was traumatic. I needed that support right then and there.” Participants provided other recommendations regarding the scheduling of psychosocial services, for example, avoid conflicting with hospital visiting hours and ensure last-minute flexibility with session scheduling given changes in caregivers’ needs and emotional states. Participants recommended that skills most essential for coping in the hospital, such as decision-making, crisis management, and communication, should be prioritized for earlier sessions, and planning-related topics should be saved for later.

Delivery Modality of Psychosocial Services

Participants expressed diverging opinions regarding preferences between psychosocial service delivery in-person and in-hospital versus virtually. The primary benefit of in-person sessions included the opportunity to establish a more meaningful relationship with service providers: “If you have somebody coming in and actually sitting with you and talking about the situation, I think that could be super helpful.” Still, participants noted that transportation to the hospital or conflicting hospital activities such as doctors’ stopping by might serve as barriers to engagement. Participants noted accessibility and flexibility as primary benefits of remote sessions. They suggested that technical support might promote engagement and help participants overcome discomfort with video calls.

Psychosocial Service Providers

Based on insight gained through experiences with a wide range of multidisciplinary care providers, participants recounted characteristics that would be important in psychosocial service providers. Participants desired service providers to be knowledgeable about their relative’s condition, so caregivers did not need to expend the energy and time to educate them. Participants also desired service providers to have a clear and straightforward communication style and to be easily and reliably reachable. Additionally, participants endorsed a strong interest in connecting with peers (i.e., other caregivers with similar experiences) to receive empathy, social support, and tried-and-true coping strategies, particularly during the follow-up interviews: “In the first couple of weeks…I thought to myself—how nice would it be to hear from another family member of someone that has gone through this, almost like a sponsor…I think that would have been really helpful…to have support from someone that knows exactly what…and has been in my shoes.”

Discussion

In this study, we described preferences for psychosocial support services among caregivers of ICU patients surviving SABI. We build on previous literature that has explored the experiences and stressors of SABI caregivers [1, 6–10] by identifying caregivers’ specific needs, preferences, and recommendations for the content and delivery of psychosocial support services. Adding to previous SABI literature that focused on different time points [1, 6–9], our participants revealed an unmet need for psychosocial support around the time of ICU discharge and at 2-month follow-up, including information to understand their loved one’s condition and to make difficult decisions, education regarding how best to communicate with the patient’s care team and other family members, emotional and behavioral coping skills, and strategies for self-care. Participants recognized the difficulty of engaging SABI caregivers in support services, given their sense of being overwhelmed, and suggested strategies for promoting caregiver uptake of services. In particular, participants highlighted the need for flexibility and individualization in the delivery of services with respect to timing of engagement, scheduling of sessions, and delivery modality (in-person vs. virtual) to maximize accessibility.

Our findings can inform the development and/or adaptation of psychosocial support services aimed at reducing emotional distress among SABI caregivers, delivered either in the ICU or after discharge. For example, “Recovering Together” (RT) [20] is a psychosocial intervention supporting dyads of patients with cognitively recovered mild–moderate brain injury and their caregivers. RT has both in-person (during hospitalization) and virtual (following hospitalization) components and has shown excellent feasibility, acceptability, and preliminary efficacy. We are currently adapting RT to a nondyadic format for caregivers of critically ill patients with SABI with more severe injury, allowing for virtual session delivery even while the patient is still in the ICU. We are currently conducting a three-center open pilot trial of this intervention, funded by a pilot grant from the Neurocritical Care Foundation (principal investigators Hwang and Prescuitti) [26]. As another example, given participants’ expressed interest in social support and peer support (i.e., connection with caregivers with similar experiences), we are currently using the present findings to develop a peer support program for SABI caregivers, funded by an F31 from the National Center for Complementary and Integrative Health (principal investigator Reichman). Future research should continue to investigate the feasibility and efficacy of interventions designed to reduce emotional distress in SABI caregivers.

Strengths and Limitations

The strengths of this study include a multicenter, geographically diverse US sample and two time points of data collection. We also used a hybrid inductive–deductive approach to qualitative data collection and analysis, which allowed us to generate rich data both by asking open-ended questions and providing prompts of specific skills that future interventions might include. Although we sampled from 14 neuroscience ICUs and aimed to capture a representative sample of SABI caregivers, we acknowledge that future research should aim to capture more race, gender, and socioeconomic diversity among SABI caregivers to explore potential nuances in experiences and needs. Similarly, we did not collect data on comorbidities or complications among patients, which could help contextualize results. We also acknowledge approximately 33% attrition from our first to second interview time point. In particular, we noticed a higher proportion of participants of color dropped out between interviews (e.g., four of seven black participants). This may be indicative of how challenging it is for caregivers to participate in activities amidst caregiving responsibilities, in particular for marginalized individuals. We also recruited participants at the discretion of site contacts, which included consideration of caregivers with expected willingness to participate in a qualitative interview. It is possible that this recruitment approach together with the high attrition of participants between our time points contributed to our missing the perspectives of the most burdened and overwhelmed caregivers. Finally, our interviews were conducted during the coronavirus disease 2019 global pandemic. It is likely that feelings of isolation and distress among caregivers were particularly heightened. Given the frequent fluctuation in visitation restrictions, we were not able to collect data on visitation policies, which may be important to contextualize our results. We also did not collect data on the composition of multidisciplinary teams working with families or caregivers’ utilization of any support resources (e.g., contacts with social workers, chaplains, or other sources of support).

In conclusion, caregivers of patients with SABI requiring tracheostomy and/or gastrostomy tube placement require tailored psychosocial support services to prevent chronic emotional distress. Existing psychosocial interventions for caregivers of ICU patients do not consider the unique needs of caregivers of patients with the most severe SABI, do not demonstrate long-term effectiveness, and often increase caregiver burden. Our study provides a blueprint of specific recommendations for the content and delivery design of psychosocial support services for SABI caregivers.