Family Presence for Patients with Severe Acute Brain Injury and the Influence of the COVID-19 Pandemic

Abstract

Objectives:

The global COVID-19 pandemic made strict visitation policies necessary. We explored the experiences of family members of patients with severe acute brain injury focusing on the impact of family presence in the hospital.

Methods:

Semistructured interviews (February 2018–April 2020) were audiotaped, transcribed, and analyzed using thematic analysis.

Results:

We interviewed family members of 19 patients with stroke, traumatic brain injury, or cardiac arrest; five interviews occurred after initiation of restrictive visitation policies. Four key themes highlight the role of visitation on family's ability to (1) cope by being at the bedside, (2) protect and advocate for the patient, (3) build trust with clinicians, and (4) receive emotional support in the intensive care unit. After visitation restrictions, families found ways to communicate and support virtually and wished for proactive communication from clinicians.

Conclusions:

Family presence at patient's bedside fulfills important needs. Visitation restrictions require hospitals to be creative and inclusive to help maintain these connections.

Introduction

Restrictive visitation policies during the COVID-19 pandemic, while necessary to protect the public health, may have adverse effects on patients and families. Family member presence may be particularly important for patients with severe acute brain injury (SABI) who are unable to communicate or advocate for their own interests. We present data from a qualitative study examining the experiences of family members of patients with SABI. The visitation restrictions at our hospital organically led to a focus on family presence and the influence of these nonvisitation policies.

Methods

Study design

Participants were identified from a larger single-center prospective longitudinal cohort study of patients with SABI and their family members. Eligible patients were in the intensive care unit (ICU) for three or more days with stroke, traumatic brain injury, or hypoxic ischemic encephalopathy after cardiac arrest, a Glasgow Coma Scale (GCS) score ≤12, and a family member at bedside (modified after COVID-19 to “available by phone”). Among enrolled patients (n = 220) and family members (n = 276), purposive sampling ensured a range of patient characteristics across conditions, age, and relationship. Questions explored patient and family needs around support, communication, and decision making (Supplementary Data). The study protocol was approved by our local institutional review board.

Data collection

In-depth semistructured interviews were conducted with family members by two trained interviewers (one physician and one research analyst). Interviews were conducted in a private room in the hospital (before visitor restrictions) or over the phone (after visitor restrictions were initiated). Interviews continued until no additional themes were identified.¹ This assessment of saturation was determined separately for interviews conducted before versus after visitation restrictions and allowed for the examination of themes represented at both time points. All interviews were audiorecorded and transcribed verbatim.

Qualitative analysis

We used qualitative description with thematic analysis to describe family members' experiences.² Two investigators (C.J.C., R.E.C.S.) read all transcripts, met regularly to discuss codes and develop a coding framework, and presented emerging themes to a larger team (J.R.C., R.A.E.). Trustworthiness was established through documentation of detailed analytic memos documenting emerging themes throughout the coding process, and by reaching consensus among a multidisciplinary team.

Results

Participants

We interviewed 22 participants (1–2 family members per patient) on average 15 days (range 4–50 days) after ICU admission (Table 1). At time of interview, none of the patients were able to speak for themselves. Fourteen interviews occurred before visitation restrictions for the COVID-19 pandemic and five after (Table 1).

Table 1.

Characteristics of Patients and Family Members

	Patients (n = 19)	Family members (n = 22)
Age, years, mean (range)	54.8 (20–79)	51.6 (22–76)
Female, n (%)	7 (37)	13 (59)
Caucasian participants, n (%)	15 (79)	19 (86)
Diagnosis, n (%)
Ischemic stroke	4 (21)	—
Intraparenchymal hemorrhage	4 (21)	—
Subarachnoid hemorrhage	5 (26)	—
Traumatic brain injury	5 (26)	—
Cardiac arrest	1 (5)	—
GCS at time of interview, mean (SD)	9 (2.6)	—
Hospital day at interview, mean (SD)	16 (12)	—
Total length of hospital stay, days, mean (SD)	35 (21)	—
Discharge location, n (%)
Home	2 (11)	—
Inpatient rehabilitation facility	6 (32)	—
Skilled nursing or long-term acute care facility	6 (32)	—
Death	4 (21)	—
Other	1 (5)	—
Relationship to patient, n (%)
Spouse/partner	—	9 (41)
Parent	—	5 (23)
Adult child	—	7 (32)
Other	—	1 (5)

GCS, Glasgow Coma Scale score.

Themes

In this iterative analysis, thematic saturation around the importance of family presence developed before implementation of visitation restrictions. We then specifically analyzed family presence comparing the interviews before and after the start of the pandemic. Families described their presence at the beside as helping them to (1) cope with their own grief and uncertainty, (2) advocate for their loved one and support their recovery, (3) observe the health care team discuss and plan the patient's care, contributing to a sense of trust, and (4) receive emotional support themselves. Families' absence made all of these activities challenging.

Table 2 gives a broad overview of these four key themes and how they were experienced before and after the COVID-19 pandemic. The first two themes focused on the connection between family member and patient, the last two themes highlighted the connection with the health care team. After visitation restriction, these relationships took on different meanings. Support occurred outside of the hospital, and clinicians provided information but less connection.

Table 2.

Exemplar Quotes for Themes Demonstrating the Importance of Family Presence

The role of visitation on family members' ability …	Before COVID-19 pandemic	After COVID-19 pandemic
…to cope by being present.	Presence enables families to cope “Just coming up here. That's my coping. … just be with him.” (#14) “I've had the benefit of watching this day in and day out. And coming to terms with it day in and day out.” (#4)	The inability to be present makes coping harder for families “I could cope with, ‘OK, he's not going to get better’, as painful as that would be, but not being able to be there for him at all during this has been the most painful thing I could ever think of experiencing.”(#16)
…to advocate for the patient and support them.	Presence enables families to protect the patient “I was having to speak up a lot just to keep [the patient's wishes] in the front” (#8) “I just want someone that cares about him here….”#12	When not present, families' cannot protect their loved one “A family member is critical to their recuperation,…I even think it could be critical to their surviving.” (#16) “We were, like, we want to go break the hospital doors down and come in, you know? You have that inherent need to protect or to be there …” (#15)
… to build trust with the healthcare team.	Presence allows for information transfer and builds trust. “We get up early, we speak to the night nurse, we don't miss any of the rounds. That's been, I think, really a good plan.” (#11) [Before restrictions] “I got to sit in and listen to … different doctors and support staff weigh in on what they're seeing …and so it's easy to go along with the recommendation.”(#15)	When families are absent, they look for information from the medical team and have a hard time considering difficult treatment decisions. “the piece that seems to be missing here is who has responsibility for keeping the family informed?”(#17) “another reason why we haven't really had a lot of discussion on the ‘future’ topic, because we haven't been able to physically see what they're doing, … his reactions to those therapies” (#19)
…to receive emotional support.	Family members feel supported in the hospital. “the doctors, the therapists, the clergy, the housekeepers … they're all just above and beyond and they'll ask and they'll give you a hug at the end of their shift.—they care.” (#6) “your waiting area…has become sort of a little community…. we all know that we're in a really crappy place right now. And …, we look out for each other. ”(#6)	The absent family member feels unsupported. “…‘Someone will call you every day.’ And this is not the first time I've heard that. Then she said, ‘If you don't hear by 7 o'clock you call the nurses and ask to have the doctor paged.’ That tells me it's not a priority.” (#17)

Coping by being present

Family members experienced their presence as beneficial for themselves and the patient; it helped them understand changing and unpredictable circumstances associated with their loved one's condition and care. Being near their family member even if they were unconscious helped family cope.

With visitation restrictions, families saw the same need to be with their loved one and found ways to interact and connect virtually. Staff helped to receive mobile devices and pictures from families at the hospital entrance and set these up in the patient rooms. This virtual window reduced the distress for family members who were not allowed to be at the patient's bedside.

“Getting a device in … has relieved a lot of stress, even though it's hard.. for me to see him like that, and not be able to be there, it definitely has put me a lot more at ease….” (# 18)

Family member's role as patient advocate and supporter

Being present for the patient was identified as invaluable to families' role as supporter and advocate. In this context, brain injury was recognized as a particular challenge given the patient's inability to understand the situation or communicate. After visitation restriction, families felt an unmet responsibility to be there to observe the patient, protect them, and be their voice throughout the day.

“You know, with brain injuries, you don't feel like she can fully comprehend what's going on and why we're not there, and that.” (#15)

Observing the health care team discuss the patient's care contributes to a sense of trust

Listening in on rounds and observing clinicians plan for and treat their loved one made families feel reassured that the patient was well cared for and provided them convenient access to clinicians and follow-up on previous conversations. As a result, they indicated developing a more trusting relationship with the health care team.

“Having [the doctors] come in between rounds at least makes me think that they're thinking about him—and that means a lot.” (#6)

After visitation restrictions, families noted additional uncertainty and stress associated with not having a structured process for follow-up and waiting for information.

“the hospital has not proactively reached out to us to let us know what's happening. The information we have received, … in every instance it's because I've picked up the telephone and said, ‘Tell us what's going on.’” (#17)

This family member wished for a “process in place to keep us informed proactively on a regular basis on how he's doing.” Ideally, this would be an identified “point person,” who could provide regular updates and relay information between the health care team and the family as well as help the family know what questions to ask.

Family members received emotional support from the health care team and from other families in the ICU

Families felt supported emotionally by the health care team. They reported receiving support from other family members in the ICU or waiting room who were going through a similar tragedy. This mutual support was often serendipitous, and was not available to families who were not allowed to visit.

After visitation restriction, family members felt compelled to call frequently and be strategic about reaching the hospital to meet their informational needs. In contrast to the emotional support that families reported receiving from clinicians before visitation restrictions, families interviewed afterward focused on informational rather than emotional support:

“I feel like I get a lot of information from the doctor. They are pretty good at answering my questions while giving me the information that I need. The nurses…in the neuro-ICU, I feel like the nurses were pretty informative” (#18)

Discussion

Our findings highlight an urgent need for hospitals to develop new ways to maintain connection when restrictive visitation policies are in place, such as during the COVID-19 pandemic. The need for personal connection with clinicians and with the patient may be particularly important after SABI when family members not only experience the personal tragedy of having a critically ill loved one, but also feel a heightened need to advocate for and make important treatment decisions on behalf of their loved one who is too ill to speak for themselves. Faced with prognostic uncertainty, studies have also reported that family member observations of the patient's physical appearance or responsiveness can help inform their perceptions of prognosis,^3,4 which is particularly important for decision making in SABI.

Video communication devices and pictures of family can enable mutual support. Families may appreciate the opportunity to be virtually present when clinicians are rounding or examining the patient. A proactive standardized process should be in place so that families get regular and consistent information from the health care team. Building and maintaining empathic connection and providing emotional support virtually require new skills, both verbal and nonverbal.^5,6 All of these changes require additional resources from hospitals including IT support and provision of devices so that all patients and families have an equal opportunity to participate, and health care providers are not additionally burdened by managing communication devices.

Limitations to this study include (1) limited generalizability due to single-center design, (2) lack of clinicians' perspectives who are also distressed by seeing patients alone,⁷ (3) lack of patients' perspectives given their inability to communicate, and (4) interviews before the pandemic included only families present at bedside, whereas interviews afterward were by phone, potentially introducing differences in responses or selection bias.

Family members have important needs for maintaining connection with critically ill loved ones and the clinicians caring for those loved ones. Understanding the diversity of needs is an important step toward meeting those needs.

Footnotes

Acknowledgments

We would like to express our deep appreciation to the families for their time and candid conversations with us during a very trying time.

Funding Information

This article was funded by a career development award from the NINDS (Grant No. K23 NS099421).

Author Disclosure Statement

Dr. Creutzfeldt receives funding from the NIH. Dr. Schutz has nothing to disclose. Dr. Lutz receives funding from PCORI and NIH and receives royalties from Medbridge. Dr. Zahuranec receives funding from NIH. Dr. Curtis receives funding from NIH and the Cambia Health Foundation. Dr. Engelberg receives funding from NIH and the Cambia Health Foundation.

Supplementary Material

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Supplementary Material

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