“Just tell me in a simple way”: A Qualitative Study on Opportunities to Improve the Transition from Acute Hospital Care to Home from the Perspectives of Patients with Traumatic Brain Injury, Families, and Providers

Abstract

Objective:

The purpose of this study was to identify areas to improve the transition from acute hospital care to home for patients with traumatic brain injury and their families.

Design:

Qualitative, descriptive

Setting:

Level I trauma centered located in the Southeastern United States

Subjects:

A total of 36 participants (12 patients with traumatic brain injury, 8 family caregivers, 16 providers).

Main Measures:

We conducted 55 semi-structured interviews with participants and used conventional content analysis to analyze the data.

Results:

Findings showed patients, families, and providers recommend three areas for improvement in the transition home from acute hospital care, described in three themes. Theme 1 was ‘improving patient and family education,’ with the following sub-themes: (a) TBI-related information and (b) discharge preparation. Theme 2 was ‘additional provider guidance,’ with the following sub-themes: (a) communication about patient’s recovery timeline and (b) recovery roadmap development. Theme 3 was ‘increasing systems-level support,’ with the following sub-themes: (a) scheduling follow-up appointments, (b) using a patient navigator, (c) creating a provider follow-up structure, (d) linking pre-discharge care with post-discharge resources, and (e) addressing social issues.

Conclusions:

These findings delineate multiple areas where patients and families need additional support and education during the transition from acute hospital care to home in ways that are currently not being addressed. Findings may be used to improve education and support from providers and health systems given to patients with traumatic brain injury and families and to inform development and testing of transitional care interventions from acute hospital care to home.

Introduction

More than 10 million people sustain a traumatic brain injury globally each year.¹ Annually, more than 275,000 people sustain a moderate or severe traumatic brain injury in the U.S. that requires immediate hospitalization.¹ For those receiving acute hospital care, typical discharge destinations include inpatient rehabilitation, skilled nursing facilities, or home.³ After acute hospital care, patients with traumatic brain injury would ideally receive interdisciplinary, inpatient rehabilitation before returning home.³ Yet, up to 60% of patients with moderate-to-severe traumatic brain injury nationwide are discharged directly home from acute hospital care without inpatient rehabilitation.^4,5 Many of these patients return home with residual impairments in cognition, coordination and balance, awareness and judgment, and have increased risks for poor long-term outcomes.⁶

Despite high risks of readmission and complex medical needs, there are no U.S. standards for transitional care management of patients with moderate-to-severe traumatic brain injury discharged home from acute hospital care without inpatient rehabilitation.⁷ The current state of transitional care for these patients includes limited provider involvement and challenges with follow-up due to fragmentation of the healthcare system, leaving the patient and family to use trial and error to learn how to manage the patient’s health and condition.⁸ In addition, traumatic brain injury transitional care intervention research is limited in this area, likely due to research emphasis on inpatient rehabilitation instead of acute care.^8–14

The purpose of this study was to describe opportunities to improve the transitional care process for patients with traumatic brain injury discharged home from acute hospital care and families. Perspectives captured include patients, families, and healthcare providers.

Methods

Study Design, Sample, and Setting

This was a qualitative descriptive study.¹⁵ The participating institutional review board approved this study before initiating. This study was funded by federal and intramural awards. Participants were recruited from a Level I trauma center in the Southeastern region of the United States between April and December 2019. We purposive sampled participants.

Recruitment

Two research coordinators screened electronic health records daily to determine patients who were eligible to participate. In the first three months of study recruitment, the research coordinators contacted a provider assisting with recruitment to notify them when a patient was eligible to participate. The provider approached the patient to determine interest in participating and then notified the research coordinators of interested participants. However, during the final five months of the study, due to a change in IRB regulations, the research coordinators were allowed to directly approach patients to explain the study and determine interest in participating. The research coordinator evaluated participants’ eligibility before recruitment and then consent and data collection occurred. Next, the associated family caregiver was approached to determine interest in participating. Patients and family caregivers were occasionally recruited separately, whereby a patient was recruited but the family caregiver was not. After recruiting and collecting patient and family data, at least one provider from the patient’s treatment team was approached to participate.

Inclusion/Exclusion Criteria

Patients were eligible to participate in this study if they: 1) were between the ages of 18 and 64 years, 2) had been diagnosed with traumatic brain injury as defined by Glasgow Coma Scale Score between 3–14,¹⁶ 3) were admitted for acute hospital care to treat traumatic brain injury-related impairments, 4) had sufficient cognitive functioning to participate, as defined by the Galveston Orientation and Amnesia Test (score ≥76 eligible),¹⁷ 5) had sufficient oral communication skills to participate, as defined by the Bedside Western Aphasia Battery-Revised (score ≥93.8 eligible),¹⁸ and 6) were set to for community discharge to home.

Family caregivers were eligible to participate if they: 1) were associated with a patient who met all patient-specific criteria, 2) were at least 18 years old, and 3) were the anticipated primary caregiver of the patient, with plans to be involved in the patient’s post-discharge home care. Healthcare providers were eligible to participate in this study if they: 1) were indicated in the electronic health record as a member of the treatment team for patient who met all patient-specific, and 2) participated in care and support of patients with traumatic brain injury or family prior to or during the transition from acute hospital care to home.

Data Collection

Patients and family caregivers participated in three interviews at the following timeframes: 1) 48–72 hours prior to hospital discharge, 2) 1-month after hospital discharge, and 3) 2-months after hospital discharge. Providers each completed one interview, up to 1 week after patient discharge. Occasionally, a patient and/or family caregiver pre-discharge interview could not occur before the time of discharge due to a short length of stay or discharge with limited notice. These participants were interviewed by phone ≤1-week post-discharge (occurred in 4 patient and 2 family interviews). Some patients and family caregivers were unable to be reached to complete scheduled post-discharge interviews or declined further participation after enrollment, which is common in traumatic brain injury research.¹⁹ Some patients and family caregivers were interviewed together if preferred; likewise, some providers who collaborated on care of the patient were interviewed together. Interviews were conducted in-person (patient’s hospital room, family waiting area, or provider’s office) or by phone.

The interview guides were piloted before use. Participants were asked similar questions about the following interview topics at each data collection time point (where relevant): patient’s injury, hospital experience, patient’s functional abilities, areas where assistance from others was needed, perceptions of the discharge process, challenges pre- and post-discharge, follow-up outpatient or community-based care and services obtained, pre- and post-discharge communication with providers, goals for the patient’s recovery, and recommendations to improve the transition from acute hospital care to home. The question on recommendations to improve the transition was: “Other than what was already done for (patient’s name), is there anything that you would have liked to see to improve (patient’s name)’s transition from acute hospital care to home?” While this article focuses on participants’ recommendations to improve the transitional, all interview topics discussed were included in the analysis. All interviews were audio recorded and transcribed verbatim. After the initial interview, all participants were asked to complete a sociodemographic questionnaire, including questions about their age, sex, race/ethnicity, etc. Each participant received a $20 gift card at the completion of each interview.

Data Analysis

We used conventional content analysis to analyze our data because it is a data analysis technique that is suitable for use with research topics where little is known.²⁰ Conventional content analysis has three phases, preparation, organization, and reporting. In the preparation phase, we checked the audio recording against the transcript for accuracy and read each transcript to get a sense of our data as a whole. We also selected our unit of analysis (section-by-section) and the type of data we would analyze (both manifest data for literal meaning and latent data for symbolic).²⁰

In the second phase, organizing, we coded our data using descriptive codes²¹ with a team of three researchers well-versed in qualitative methods. The qualitative analysis was led by the first author, who has over 8 years’ experience in qualitative methods. We coded each transcript independently and then met to discuss our codes. We discussed discrepancies in coding until we reached consensus. After, we edited our codebook, which included a list of all codes that emerged from our data analysis, their definitions, and quotation exemplars. We grouped all our codes based on similarities, developing our preliminary categories.^20,21 We continued this process for our first 10 transcripts until we developed our initial coding scheme. The initial coding scheme focused on specific areas to improve the transitional care process, including patient and family education, provider guidance, and health-system support.

We divided the remaining transcripts among the team to code independently using the initial coding scheme and continued meeting to discuss coding discrepancies. We coded using descriptive, categorical, and analytical codes throughout this process.²¹ After the primary team member finished coding their assigned transcript, a secondary team member reviewed the coding (inter-coder reliability) and highlighted any discrepancies.²¹ After each transcript was coded and discussed, the codebook was revised. After all transcripts were coded, we grouped similar codes into subcategories, categories, and themes. In the reporting phase, we use thick description with quotation exemplars, and a conceptual model to illustrate our findings.^20,21

Rigor

To uphold the rigor of our study, we engaged in multiple strategies related to credibility, dependability, confirmability, and transferability.^22,23 To address the trustworthiness of our findings, defined as the confidence one can place in the truthfulness of the findings, our team engaged in prolonged data collection and conducted peer debriefing when discussing our analysis. For dependability, defined as likelihood of replicability of findings, we kept a detailed audit trail of data collection and analysis procedures. Regarding confirmability, defined as representativeness of findings in relation to participants’ experiences, we describe our findings using multiple quotation exemplars that illustrate the experiences of the majority of our participants. To increase transferability, defined as applicability of findings to other contexts or settings, we detail our inclusion and exclusion criteria and use thick description in our results section.^22,23

Results

Our final sample included 36 participants (12 patients with traumatic brain injury, 8 family caregivers, 16 healthcare providers). We conducted 55, semi-structured, in-depth qualitative interviews, including 23 patient interviews (7 pre-discharge, 16 post-discharge); 15 family caregiver interviews (6 pre-discharge, 9 post-discharge); and 18 provider interviews (all post-discharge), including two providers who were each interviewed twice (each time about a different patient). See Table 1 for information about interviews completed and the association between patients and family caregivers. Interviews ranged from 19 to 57 minutes.

Table 1.

Interviews Completed and Association of Patients, Family Caregivers, and Healthcare Providers

Patient, family, provider association group	Patients					Family Caregivers					Healthcare Providers a
	Study ID#	Pre-discharge interview	1-week post-discharge interview*	1-month post-discharge interview	2-months post-discharge interview	Study ID#	Pre-discharge interview	1-week post-discharge interview*	1-month post-discharge interview	2 months post-discharge interview	Study ID#, Provider #1	Post-discharge interview	Study ID#, Provider #2	Post discharge interview	Study ID#, Provider #3	Post-discharge interview
Group #1	101	Missed	N/A	X	X	401	X	N/A	X	X	801	X	N/A	N/A	N/A	N/A
Group #2	102	X	N/A	Missed	Missed	402	X	N/A	Missed	Missed	802	X	N/A	N/A	N/A	N/A
Group #3	103	X	N/A	X	X	403	X	N/A	X	X	803	X	N/A	N/A	N/A	N/A
Group #4	104	N/A	X	X	Missed	404	N/A	X	Missed	Missed	804A	X	804B	X	N/A	N/A
Group #5	105	N/A	X	X	X	405	N/A	X	X	X	805	X	N/A	N/A	N/A	N/A
Group #6	106	X	N/A	Missed	Missed	406	X	N/A	Missed	Missed	806	X	N/A	N/A	N/A	N/A
Group #7	107	X	N/A	X	X	407	X	N/A	Missed	Missed	807A	X	807B	X	N/A	N/A
Group #8	108	N/A	X	Missed	Missed	408	N/A	X	Missed	Missed	808	X	N/A	N/A	N/A	N/A
Group #9	109	X	N/A	X	X	No caregiver recruited	N/A	N/A	N/A	N/A	809A	X	809B	X	809C	X
Group #10	111	N/A	X	Missed	Missed	No caregiver recruited	N/A	N/A	N/A	N/A	811A	X	811B	X	N/A	N/A
Group #11	112	X	N/A	Missed	Missed	No caregiver recruited	N/A	N/A	N/A	N/A	812A	X	812B	X	N/A	N/A
Group #12	113	X	N/A	Missed	Missed	No caregiver recruited	N/A	N/A	N/A	N/A	813	X	N/A	N/A	N/A	N/A

Note: X= interview occurred; N/A = Not applicable

^*= interview only occurred at 1-week post-discharge for patient & family if pre-discharge interview was not possible;

^a= At least one provider was recruited for each patient; Missed – planned interview did not occur

Most patients were young (mean age 34), White men (n=7) who were unmarried (n=7). The mean length of stay at study enrollment was 10 days. While the majority had insurance (n=8), most patients were low-income (household income of ≤$30,000; n=7). Most family caregivers were middle aged (mean 49 years), married (n=7) women (n=5), who identified as a spouse (n=4) or parent (n=3) of the patient. Healthcare providers were young (mean age 38), White (n=12) women (n=14) with a mean of 9 years in practice. Interdisciplinary provider perspectives were captured from registered nurses (n=4), case managers (n=4), physical therapists (n=3), speech-language pathologists (n=2), and from one medical doctor, occupational therapist, and social worker each (see Table 2 and 3).

Table 2.

Demographic Characteristics of Patients with TBI and Family Caregivers

Variables	Patients (N=12)	Family Caregivers (N=8)
Age, mean years (SD)	34.6 (11.8)	49 (12.5)
Length of stay at time of interview, mean days (SD)	10.1 (16.1)	-
	n	n
Sex (female)	5	5
Traumatic Brain Injury severity
Mild (Glasgow Coma Scale score: 13–14)	4	-
Moderate (Glasgow Coma Scale score: 9–12)	4	-
Severe (Glasgow Coma Scale score: 3–8)	4	-
Cause of injury
Car accident	8	-
Fall	1	-
Other	3	-
Race/Ethnicity
Black/African American	3	3
White	7	3
Hispanic/Latino	2	2
Marital Status
Married	4	7
Separated	1	-
Single	7	1
Number of children
1	3	1
2	1	2
3+	2	1
Relation to patient
Spouse	-	4
Parents	-	3
Grandparents	-	1
No family caregiver recruited	4	-
Education
Completed 8th grade	-	1
High school Diploma/GED	4	3
Two-year/Technical College	1	1
Bachelor’s Degree	1	3
Other (some high school, some college, culinary)	6	-
Annual income prior to injury
$0–30,000	6	3
$30,001–60,000	1	3
$60,001–90,000+	3	2
Not provided	1	-
Self-described socioeconomic status
Working Class	8	4
Middle Class	4	4
Patient insurance status
Uninsured	4	2
Insured	8	6
Work situation prior to injury
Full-time	10	5
Part-time	-	-
Not working, but actively looking for work	1	-
Not working, not looking for work	1	1
Retired	-	2
Anticipated post-discharge work situation (at time of interview)
Full-time	5	4
Part-time	1	1
Not working, but actively looking for work	2	-
Not working, not looking for work	3	1
Retired	-	2
Other	1	-
Pre-admission living arrangement
Home with family	9	8
With friends	1	-
Alone	2	-
Anticipated post-discharge living arrangement of patient
Home with family	10	8
With friends	1	-
Alone	1	-
Anticipated support post-discharge (select all that apply)
Family caregiver	-	6
Family	10	4
Friends	2	2

Table 3.

Demographic Characteristics of Healthcare Providers

Variables	Total (N=16)
Age, mean years (SD)	38 (12.5)
Years in Active Practice, mean years (SD)	9.1 (9.7)
	n
Sex (female)	14
Race/Ethnicity
Black/African American	2
White	12
Asian	2
Hispanic	1
Education
Associate degree	1
Bachelor’s degree	2
Master’s degree	9
Doctorate degree	4
Provider role
Registered nurse/Nurse Practitioner	4
Physician	1
Occupational therapist	1
Physical therapist	3
Speech-language pathologist	2
Case manager	4
Social worker	1
Work setting
Trauma/acute care	15
Inpatient rehabilitation	1
Ages of patients seen (select all that apply)
13–18 years	10
19–39 years	16
40–59 years	16
60 years & older	16
Frequency in treating patients with traumatic brain injury
1–2 per year	1
1–2 per month	7
1–2 per week	5
1–2 per day or more	5

The findings include the many recommendations patients, families, and providers made to improve the traumatic brain injury transition home from acute hospital care, encompassed in three themes: 1) improving patient and family education, 2) additional provider guidance, and 3) increasing systems-level support. Figure 1 illustrates the three themes (far left, white rectangles), their associated sub-themes (grey ovals), and the timeframe in which the sub-themes were relevant (pre- and/or post-discharge).

Figure 1.

Conceptual Model Illustrating Themes and Subthemes and the Time Frames in Which They Were Relevant

Theme 1: Improving Patient and Family Education

Participants collectively expressed a desire for additional pre-discharge patient and family education from providers. The following sub-themes illustrate patient and family educational topics desired: 1) traumatic brain injury-related information and 2) discharge preparation. Regardless of educational topic, patients and family caregivers desired educational materials be delivered verbally with written information to refer to later. A family caregiver describing her preferences for educational materials stated:

“I’m a big fan of having printouts and things for patients – for family to be able to read for different situations”

(Family Caregiver #402).

Patients and family caregivers hoped education could be provided in layman’s terms, as one patient stated:

“Everybody hasn’t gone to school for medical stuff and has such a large vocabulary. A lot of people use basic words. Just tell me in a simple way.”

(Patient #103).

Traumatic Brain Injury-Related Information

During the hospital stay, patients and family caregivers mentioned a need for more information about the traumatic brain injury diagnosis, including how traumatic brain injury is defined and what symptoms and/or impairments will likely occur. Family caregivers perceived that more information from providers about traumatic brain injury could help them stay calm in this unexpected situation. Family caregivers also desired information about expectations of the patient’s recovery with examples of what types of improvements they may see in the patient pre- and post-discharge. They also wanted providers to give them education on what good and bad days might look like for the patient, what might cause these changes, and how the family might be able to assist the patient. Patients and families also desired up front, clear information about all the diagnoses the patient had; in a few instances, patients and family caregivers perceived providers failed to tell them the patient was diagnosed with a traumatic brain injury because they were only told about the patient’s diagnosis by research staff, not providers.

The few providers who expressed a desire for more patient and family education about traumatic brain injury-related information perceived a need for more discussion about specific phases of traumatic brain injury recovery. Providers shared that education on specific phases of traumatic brain injury recovery could help family members know what behaviors are normally expected and understand why they are seeing certain behaviors from the patient. Providers also perceived patients and families needed to be educated on the chronic nature of traumatic brain injury-related consequences to help them develop reasonable expectations about the length of the patient’s recovery and amount of support the patient would need post-discharge, as one provider stated:

“A piece that we didn’t get to discuss was the possibly chronic piece of her symptoms. That she may actually feel some of these symptoms again later”

(Provider #804A).

The lack of traumatic brain injury information could lead to a mismatch between patient and family expectations and their reality and cause unnecessary stress for all parties involved.

Discharge Preparation

Discharge preparation was an area only patients and families suggested improvements to be implemented pre-discharge. Patients and family caregivers suggested providers develop new, patient-friendly materials to improve the discharge preparation process. The current, standard discharge template used at the participating hospital was viewed as inadequate because it was a multi-page, dense document with small font that was difficult to digest. In many instances, the discharge instructions was never reviewed by patients, particularly for patients with vision or concentration issues or for patients who were tired or too focused on going home at discharge. Recommendations from patients and family caregivers included development of a one-page, easy to read discharge document designed specifically for patients with traumatic brain injury that includes quickly accessible information about patient signs and symptoms to be on the lookout for, and who to call if issues arise, emphasized in a patient’s statement:

“Try spelling out, look, if you have a question about this, this is the best number to try to call someone. Something like that may have been helpful.”

(Patient #105).

Family caregivers suggested the patient-friendly document could be used in conjunction with the standard discharge template.

Family caregivers also expressed a desire to receive education about the patient’s discharge instructions well in advance of discharge to give the family enough time to prepare for the patient’s return home. Family caregivers who were not able to present at the time of the patient’s discharge wished they could have received education about the patient’s discharge instructions in-person or over the phone before discharge occurred.

Theme 2: Additional Provider Guidance

The theme ‘additional provider guidance’ incorporates recommendations solely from patients and family caregivers on how to improve the pre- and post-discharge support given by providers, encompassed in two sub-themes: 1) communication about the patient’s recovery timeline and 2) recovery roadmap development.

Communication about the Patient’s Recovery Timeline

Patients and family caregivers expressed a strong desire for improved communication from providers about the patient’s pre-discharge plan of care to help the patient and family prepare mentally and physically for upcoming events (such as hospital procedures and discharge date). Both patients and family caregivers wanted communication to occur well in advance of events, as a patient stated:

“I think I was in the dark about an expectation on what time are we gonna have surgery, or when could we expect this, everyone [providers] was very, ‘I don’t know, it’ll happen when it happens,’ which is incredibly hard to plan for”

(Patient #105).

Most family caregivers wanted more clarity on big milestones that directly affected the family, such as advanced notice about the patient’s planned discharge date. Some family caregivers were surprised when the patient’s discharge date was moved up several days with limited notice. Consequently, family caregivers emphasized the need for providers to communicate more clearly with the family about the patient’s pre-discharge recovery timeline. A family caregiver who was incensed about the lack of communication from providers stated:

“Everything should have a plan when you’re in the hospital. There should be a timeline. ‘If you do good here, let’s go to the next step.’ And they [providers] need to communicate about it. There was a lack of communication. You [providers] can talk to the patient. But is he [the patient] going to be independent when he walks out of here? No! So, they [providers] should talk to every party involved rather than just one.”

(Family caregiver #106)

Recovery Roadmap Development

Post-discharge, patients and family caregivers reported a desire to work together with providers to develop the patient’s recovery roadmap to facilitate goal setting and attainment. The patient and family caregiver wanted post-discharge meetings with a provider who was familiar with the patient’s case to help develop their roadmap incorporating short- and long-term recovery goals related to the patient’s return to pre-injury activities (such as working). These incremental goals could include goals that patients set for themselves and goals that the family caregiver and provider set for the patient. Patients and family caregivers hoped they could also meet regularly to discuss strategies to achieve these goals and review and revise goals. A family caregiver discussing the need for this recovery roadmap stated:

“After discharge, we probably should have come up with a plan for his recovery. That would include maybe meeting one of his physicians to see what we need to do to help him reach his goals, whether it’s more physical therapy or occupational therapy to get him back to where he can get back to work.”

(Family caregiver #101).

Theme 3: Increasing Systems-Level Support

The theme ‘increasing systems-level support’ encompasses perceptions primarily from providers on additional assistance needed from the health system and insurance companies to improve support given to patients and families during the transition home from acute hospital care. The sub-themes associated with this theme include: 1) scheduling follow-up appointments, 2) using a patient navigator, 3) creating a provider follow-up structure, 4) linking pre-discharge care with post-discharge resources, and 5) addressing social issues.

Scheduling Follow-Up Appointments

Providers discussed concerns about variations in scheduling of follow-up appointments, including occasions where all, some, or no follow-up appointments were scheduled for the patient pre-discharge. A provider discussing their concerns about variability in appointment scheduling stated:

“I think the big issue I have is when patients do not have an appointment made for them by our team and they are asked to follow up in two weeks, so that always scares me when it’s not solidified prior to them leaving”

(Provider #809A).

To prevent variations in appointment scheduling, providers recommended implementation of a standard process for scheduling all follow-up appointments for patients with traumatic brain injury before discharge home; providers suggested that scheduling be completed by dedicated in-patient staff members, who could then clearly communicate all scheduled appointments to the patient and family caregiver before discharge.

Like providers, patients and family caregivers described the usefulness of having the patient’s appointments scheduled pre-discharge. However, patients and family caregivers also wished appointments were in a more convenient manner, as a family caregiver stated:

“Having some of the follow-up appointments already set was nice, although it’s ridiculous that there were seven follow-up appointments and none of them were scheduled on the same day.”

(Family caregiver #405).

Using a Patient Navigator

More than two-thirds of providers in the sample perceived a need for implementation of a patient navigator who could work in conjunction with the health system to follow up with and support the patient and family post-discharge. Providers envisioned the patient navigator would have a multi-faceted role, including evaluation of patient and family caregiver needs, referral to other services, care coordination, post-discharge consultation, and education. A provider stated:

“In terms of a transition program to home for traumatic brain injury patients, it would be nice to consider a provider to assess the needs of the patients and families and help provide resources they might need once they’re home.”

(Provider #802).

Providers hoped the patient navigator could collaborate with the inpatient care team during the patient’s hospital stay to learn about the patient’s case and potential needs. Providers expressed a desire for a patient navigator to contact the patient and family caregiver by phone ≤48 hours post-discharge to see how the discharge went, assess their unmet needs, and refer to additional services. Providers also described the need for the patient navigator to continue following up, by phone, weekly with the patient and family caregiver for at least one-month post-discharge to continue evaluating needs and providing referrals. As providers described that most patients with traumatic brain injury are referred to no less than five follow-up appointments, providers also hoped the patient navigator could assist the patient with care coordination, including helping the patient to schedule and reschedule follow-up appointments at convenient times and locations, and confirm and give reminders about upcoming appointments. One provider discussing the importance of implementing a patient navigator stated:

“If a patient navigator could check in a couple days after leaving the hospital to make sure they’re [the patient] safe in the home, they’re taking their medicines, or follow up on them to ask ‘any problems now that you’re home that we need to help you triage?’ Those kinds of things, with a lot of our patients, would improve their healing process once they leave the hospital.”

(Provider #809A).

Regarding post-discharge consultation, providers expressed the desire for the patient navigator to be available to answer questions about post-discharge concerns. Providers also expressed a desire for the patient navigator to deliver patient and family education on medication management, self- and family-management, post-discharge expectations of recovery, and how to best support and encourage the patient at home.

Providers described the ideal patient navigator would be a provider: (a) with case management experience, (b) with in- and out-patient experience caring for patients with traumatic brain injury and supporting their family caregivers and (c) who could work effectively with patients and family caregivers over the phone and/or remotely. Providers suggested a provider trained a variety of providers may be suitable in the patient navigator role, including a:

“registered nurse liaison,”

(Provider #812A)

“outpatient case manager,”

(Provider# 811A)

or

“clinical licensed social worker”

(Providers #801 and #811B)

Creating a Provider Follow-Up Structure

Several providers lamented at the lack of a consistent post-discharge follow-up structure for patients with traumatic brain injury discharged home from acute hospital care. They expressed concerns about fragmentation in care, variation in follow-up time frames, and lack of a set structure or location for follow-up with patients with traumatic brain injury; however, few patients or families described fragmentation in follow-up care as a problem. Providers emphasized that the lack of a follow-up structure for patients with traumatic brain injury was a health system issue that was not easy to fix, as one provider stated:

“It would have been great if we didn’t always have that many patients to take care of in the hospital and could pay more attention to also following up with patients when they were out of the hospital. But I think that’s partly a fault of the system”

(Provider #807B).

Providers recommended development of a centralized, follow-up clinic, run by advanced practice providers, to proactively address the follow-up needs of patients with traumatic brain injury. Providers perceived patients could obtain interdisciplinary care and guidance at the clinic to improve outcomes and address unmet needs that, if unaddressed, could lead to unplanned readmissions. Providers felt it would be beneficial for patients to complete a telehealth visit (over the phone or by video) within the first 2 weeks post-discharge, as a provider stated,

“I would have liked if one of our nurse practitioners could have called him a week or two after he was out [discharged home] to sort of follow up on him”

(Provider #808).

Providers also described the potential need to have patients come to the clinic for an in-person follow-up visit within 4 weeks post-discharge. As necessary, follow-up clinic providers could refer patients and family caregivers to additional services to address outstanding needs.

Perhaps in conjunction with the traumatic brain injury follow-up clinic, some providers described a desire for home health to follow-up with all patients with traumatic brain injury, regardless of insurance status or severity of injury. During home health visit(s), a provider could check on the patient, family caregiver, and their home environment and address any pertinent needs, such as safety concerns and issues with medication management, wound care, mobility, and functional independence. Providers emphasized that home health visits would help someone get a visual on the patient to ensure things are okay, as one provider stated:

“We didn’t send her [the patient] home with home health, but I’m a big believer in someone in healthcare physically laying eyeballs on them [the patient] once they’re gone [discharged home], especially with a traumatic brain injury patient”

(Provider #809A).

Providers perceived that home health visits would be especially beneficial for patients who had more severe deficits in physical and cognitive functioning, family caregivers that needed extra support, or patients who had limited social support post-discharge. Providers suggested that the initial home health visit occur within two weeks post-discharge but thought the initial visit may need to occur earlier for more severe patients. Although providers did not express the need for the home health provider to have advanced practice training, providers did suggest that a structure be put in place for the home health provider to communicate information about the patient’s case with follow-up providers.

Linking Pre-Discharge Care with Post-Discharge Resources

To address the fragmentation in transitional care, a number of providers described a need to create a link between pre-discharge care and post-discharge, community-based resources so that patients and family caregivers could be seamlessly referred to community-based services based on their needs. No patients or families made this specific recommendation, but a few patients and families shared problems with not knowing where to get community services. Providers perceived referral to community-based resources would proactively provide assistance for patients and family caregivers that were unaware of what needs might arise. Providers reported these proactive referrals to community-based services may help to prevent unplanned readmissions, as a provider stated:

“We have a tendency to be like – ‘Okay, we’re [providers] medically done with you. You [the patient] can leave now.’ But this is an individual who has a high risk of readmission, whether it’s through a different accident or through mismanagement of his care at home. I would like to see us reach out a little more or have more connection with community resources or our outpatient clinics to support these patients.”

(Provider #812A)

Providers also suggested the health system develop an easy way for patients post-discharge to be granted access to their health records or to transfer their records to other locations, as many community-based services request detailed information on the patient’s case to determine eligibility. Finally, providers also perceived a need for more resources specifically for family caregivers of patients with traumatic brain injury to better support them in the out-patient setting. As the majority of existing resources focus solely on the patient, a provider stated:

“I think caregivers don’t have resources. We don’t have a good mechanism for all of types of things to support the families of patients in outpatient.”

(Provider #813).

Addressing Social Issues

Participants suggested implementation of strategies by the health system or insurance companies pre- and post-discharge to address social issues during the transition from hospital to home, including problems with finances and transportation. Specific approaches suggested by participants included payment assistance programs and strategies to increase the likelihood that patients attend follow-up appointments.

The payment assistance programs discussed by participants were particularly for patients with limited or no insurance or low-income patients who were unable to afford the healthcare they received or their prescribed medications. Although participants agreed that payment assistance programs were needed, there were differing opinions about where assistance should be given. Patients and family caregivers desired assistance from the health system or insurance companies to cover the costs of the expensive healthcare the patient received. A patient describing their concerns about the amount of healthcare debt they were facing as a result of the hospitalization stated:

“I need more reimbursement to be honest with you. I’m not one to look for handouts or charity, but the cost of this hospital stay has totally disrupted me and my family’s lives. And there is nothing I can do about it. I feel so helpless, and I hate that feeling”

(Patient #111).”

In contrast, providers described a need for assistance from insurance companies or the health system to pay for patients’ prescribed medications (pre- and post-discharge).

To increase the likelihood of patients attending follow-up appointments, providers desired a way to address patients’ transportation and financial issues that may prevent the patient from attending follow-up appointments. To address transportation issues, providers recommended that in-person physical, occupational, or speech therapy appointments occur at the patient’s home. Providers also suggested that insurance companies or health systems provide taxi vouchers to pre-pay for transporting the patient to and from appointments, as a provider stated:

“People are unfunded; they don’t have money; they have problems with transportation. We could give them a taxi voucher to get to their follow-ups”

(Provider #803).

For patients with financial issues, providers suggested patients be referred to subsidized therapy options, such as therapy clinics conducted by therapy students, so patients could still receive therapy at decreased costs they could likely afford.

Discussion

The purpose of this study was to describe opportunities to improve the transitional care process for patients with traumatic brain injury discharged home from acute hospital care and their family caregivers. Findings showed patients, family caregivers, and providers recommend: 1) improving patient and family education, 2) additional provider guidance, and 3) increasing systems-level support.

There has been a variety of literature published on educating patients with traumatic brain injury and their families.²⁴ Most traumatic brain injury education is directed at family members²⁴ and is commonly delivered by nurses²⁵ and other allied health care providers. However, although research shows family members recognize the need for additional education, some may not know areas in which education is needed.^9,11,26,27 This study contributes to the literature by recommending areas to improve traumatic brain injury education, specifically traumatic brain injury-related information and discharge preparation, based on patient, family, and provider perspectives. Also, this study recommends development of patient-friendly discharge instructions, to help make care more patient-centered and encourage patients to be active participants in their own care.²⁸

Limited research has been conducted on areas where provider support is lacking for patients with traumatic brain injury and their family caregivers. Prior research shows patients with traumatic brain injury and families desire providers increase patient advocacy, empower patients and families, and improve their relationships with patients and familes;¹¹ many of these strategies can be addressed through improved communication from providers with patients and families. Similarly, this study showed patients and families desired improved communication from providers about the patient’s recovery timeline. Also, this study contributes to the literature by showing patients and families desire provider guidance in goal setting and attainment, as evidenced by desires for assistance with development of a recovery roadmap.

As health systems are the ultimate drivers of care practices for all patient populations,²⁹ it is imperative that researchers conduct studies to not only understand how health systems operate but to elucidate areas for improvement in health systems’ structure. Though health systems outside of the U.S. operate differently, U.S. health systems play a large role in implementation of a structure to facilitate transitional care support.^30–32 These findings suggest health systems’ improve their transitional care support of patients with traumatic brain injury and families, including enhancement of referrals to community-based resources, coordination of care, development of a provider follow-up structure, and addressing social needs; some of these strategies have been shown to improve patient outcomes and decrease healthcare costs in non-traumatic brain injury patient populations.^32–35 As there are limited traumatic brain injury transitional care interventions, more support from the health system, in conjunction with implementation science research, is needed to implement effective strategies to address the transitional care needs of patients with traumatic brain injury and their families.

As provider perspectives are often neglected in the traumatic brain injury literature,³⁶ in this study, we identified and compared longitudinal perspectives from three different but linked groups: patients with traumatic brain injury, families, and providers. We describe their areas of convergence in perspectives, such as improving patient and family education, as well as areas of divergence, such as the manner in which to address the social needs of patients with traumatic brain injury. Also, we provide a sorely needed assessment of strategies to improve the acute care transition from hospital to home from patient, family caregiver, and provider perspectives. Most traumatic brain injury literature on transition and post-discharge needs of patients with traumatic brain injury and their family caregivers focus solely on events surrounding inpatient rehabilitation,^{8–10,12,14,37,38} even though up to 60% of patients with traumatic brain injury are discharged directly home from acute hospital care without inpatient rehabilitation.^3–5 The needs of patients with traumatic brain injury discharged home from acute hospital care compared to those who go to inpatient rehabilitation are unique due to different levels of injury severity, less time for provider support or intervention, and distinctive social circumstances (such as limited to no insurance for afford inpatient rehabilitation). Thus, new knowledge of patient and family needs during the traumatic brain injury acute hospital care transition to home and on how to address their needs is warranted.

There are numerous strengths in this study including incorporation of perspectives of patients with traumatic brain injury, family caregivers, and providers and longitudinal data collection. However, this study is not without limitations. Multiple patients and family caregivers in this study were low-income, with the majority of patients having household incomes under $30,000 per year. As the social needs of low-income patients and families may be different compared to moderate- or high-income patients and families, findings may not represent the needs of all patients with traumatic brain injury. However, as low-income patients and families often depend on health systems for support in healthcare needs, these findings provide foundational evidence on how to alter health systems to better support the transitional care needs of low-income patients with traumatic brain injury and families.

Additional research is needed on the specific needs of patients with traumatic brain injury and family caregivers during the transition from acute hospital care to home. Future scholars may wish to interview health system leaders’ perspectives on improving the traumatic brain injury transitional care process and on the feasibility of implementation of these recommendations. Finally, future research is needed to develop and test patient- and family-centered traumatic brain injury transitional care interventions.

Perspectives of patients with traumatic brain injury, families, and health care providers show there are three main areas for improvement of the acute hospital care transition to home, including: 1) improving patient and family education, 2) additional provider guidance, and 3) increasing systems-level support. Findings can be used individually or in combination by healthcare providers, clinical services, and health systems to improve the education and support given to patients and families during the transition home from acute hospital care.

Clinical Messages.

• Recommendations from patients with traumatic brain injury, family, and providers to improve the transition from acute hospital care to home include improving patient and family education, additional provider guidance, and increasing systems-level support.

• Findings suggests a need for additional support for and education of patients with traumatic brain injury and families during the transition from acute hospital care to home in ways that are not currently available.

Availability of Data and Material:

Please contact the first author for underlying research materials.