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OUTLINE

1. Abstract
2.
3. Keywords
4. List of abbreviations
5. Methods
6. Results
7. Discussion
8. Conclusions
9. Suppliers
10. Disclosures
11. References

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4.

TABLES (2)

1. Table 1
2. Table 2

ARCHIVES OF REHABILITATION RESEARCH AND CLINICAL TRANSLATION

Volume 6, Issue 3, September 2024, 100351

ORIGINAL RESEARCH
RANDOMIZED TRIAL TO EVALUATE EFFECTS OF PEER- AND CLINICIAN-LED INTERVENTIONS
FOR CAREGIVERS OF INDIVIDUALS WITH ACQUIRED BRAIN INJURY

Author links open overlay panelMichael L. Jones PhD a, Mariellen Jacobs BFA a,
Claire Holley BSN, RN a, Mark Sweatman PhD, MBA a b, Nicole Thompson MPH a,
Brittany Wright PhD c, Shannon B. Juengst PhD, CRC c
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ABSTRACT

OBJECTIVE

To evaluate the effectiveness of 2 interventions for caregivers of patients with
acquired brain injury (ABI) transitioning home after inpatient rehabilitation,
to prepare them for the role of caregiving and reduce stress and depression.

DESIGN

Controlled trial with participants randomly assigned to (1) usual care (UC), (2)
clinician-delivered Problem-Solving Training (PST), or (3) peer-led Building
Better Caregivers (BBC) training; both experimental interventions initiated
during the inpatient rehabilitation stay, delivered virtually, of similar
intensity (six 60-minute sessions), and focused on managing stress and building
skills related to caregiving.

SETTING

Nonprofit rehabilitation hospital specializing in care of persons with acquired
brain and spinal cord injuries.

PARTICIPANTS

Caregivers (n=169) of patients with ABI (54 stroke; 115 other ABI) admitted for
rehabilitation whose discharge location was home with care provided by family
members (caregivers: 83% women, 62% White, age [mean ± SD]: 51±11.5 y).
Participants were recruited from February 2021 to November 2022, when COVID-19
restrictions were in place.

INTERVENTIONS

Noted above.

MAIN OUTCOME MEASURES

Caregiver-reported stress, depressive symptoms, and caregiving self-efficacy;
patient unplanned hospital readmissions and emergency department visits 30 days
post discharge.

RESULTS

Only 61% of participants in the 2 intervention groups completed 3 or more of 6
intervention sessions and only 53% completed all data collection surveys.
Statistically significant improvements between UC and PST groups were noted for
caregiver stress (p=.039). Positive differences in caregiver self-efficacy found
between UC and the BBC intervention groups approached significance at 30 days
after discharge (p=.054). Patient unplanned hospital readmissions and days
hospitalized were also higher, albeit not statistically significant, for UC
participants than both intervention groups.

CONCLUSIONS

Although positive findings were noted, results were negatively affected by study
limitations including low enrollment and limited engagement (intervention
completion and follow-up outcomes assessment). These limitations resulted, in
part, from restrictions put into place during the COVID-19 pandemic, which
limited contact with study participants and required alterations to the BBC
intervention likely influencing its effectiveness. Despite limitations noted,
the encouraging findings suggest the need for further research.

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KEYWORDS

Acquired brain injury
Caregiver stress and burden
Family caregivers
Inpatient rehabilitation
Rehabilitation
Transition support services

LIST OF ABBREVIATIONS

ABI
acquired brain injury
ANOVA
analysis of variance
BBC
Building Better Caregivers intervention
d
Cohen's d effect size
KCSS
Kingston Caregiver Stress Scale
MCID
minimal clinically important difference
MD
mean difference
PHQ-9
Patient Health Questionnaire-9
PST
Problem-Solving Training intervention
RSES
Revised Self-Efficacy Scale for Caregivers
UC
Usual care
Acquired brain injury (ABI) is a significant cause of long-term disability,
affecting more than 6 million Americans.1, 2, 3 More than 80% of ABI survivors
who require hospitalization are discharged home4, many with significant care and
supervision needs resulting from physical and cognitive impairments.5 Family
members often must take on responsibility of long-term caregiving, resulting in
high levels of caregiver stress and burden, and increased likelihood of
unplanned hospital readmissions for patients.6, 7, 8, 9, 10, 11
The problem of caregiver stress and lack of preparation for caregiving is widely
acknowledged.7, 8, 9, 10, 11, 12, 13, 14, 15, 16, 17, 18, 19, 20, 21, 22, 23 The
long-term, adverse effect of caregiver stress/burden affects both patient and
caregiver.15,16 The family's ability to cope with stress can influence the
quality of support they provide and, consequently, the extent of recovery after
ABI.19, 20, 21, 22, 23 Effective problem-solving can improve self-efficacy, and
decrease anxiety and depression for caregivers.19 Caregivers with greater
self-efficacy in managing their loved one's care needs report being better
equipped to cope with the demands of caregiving.20
Most inpatient rehabilitation programs provide support to family members of
patients with ABI in preparation for discharge, including training in care
routines needed by patients (eg, bowel and bladder management, tube feeding,
medication management), counseling to help cope with patients’ behavioral and
emotional changes, and discharge planning (eg, assistance with locating needed
resources locally). However, it is often difficult to engage families in
intervention efforts during the inpatient stay because of the overwhelming
consequences of their loved one's injury. Family members don't yet understand or
accept the long-term and potentially permanent nature of the patient's care
needs, the complexity of continuing medical care, the changing family dynamics,
and the financial effect of ongoing medical costs and lost productivity of
family members.
As a result of this lack of understanding, family members do not appreciate the
importance of interventions to help them manage stress and improve caregiving
self-efficacy. Because the patient has not yet returned home, many of the care
and supervision needs have not become evident. Families still “wish for the
best” outcome for their loved ones and are reluctant to prepare for the role of
caregiving. Once home, the opportunity to deliver a preventive
transition-support intervention is often lost due to funding limitations.
Several structured interventions have been developed for family caregivers and
some have shown efficacy in reducing caregiver stress and improving
self-efficacy.24, 25, 26, 27, 28, 29, 30 However, these interventions were not
originally developed for delivery during the acute stage of recovery - before
the patient is discharged home with family caregivers. The interventions also
vary in ways that have been identified as important by caregivers, such as group
vs. individualized delivery, facilitation by a clinician vs. peer mentor, and
in-person vs. online participation. The purpose of this research was to evaluate
2 promising caregiver interventions with established efficacy, initiated during
the inpatient stay, on caregiver outcomes of stress, depression, and
self-efficacy; and secondarily on patient health outcomes.
We sought to answer the following research questions: (1) Will caregivers engage
during the acute injury stage in the interventions; (2) will the interventions
be effective in reducing stress and depression, and improving self-efficacy; and
(3) will intervention effects impact health outcomes for patients?

METHODS

DESIGN

We conducted a randomized trial to compare effects of 2 interventions to UC on
the outcomes reported by family caregivers. The research protocol and study
materials, including informed consent form for participants, were approved by
the hospital's institutional review board prior to initiating the study.

SETTING

This research was undertaken at a private, nonprofit hospital specializing in
neurorehabilitation. The hospital admits approximately 350 patients annually for
comprehensive inpatient rehabilitation after ABI. About 90% of patients are
discharged home after the inpatient stay; >80% of patients are in the care of
family members.

PARTICIPANTS

We targeted an enrollment of 180 participants (60 per group) based on sample
size calculation and available funding for the study. Sample size was calculated
based on a repeated-measures analysis for our primary outcomes (caregiver
stress, depression, and self-efficacy). We based effect size on previous
research by Lorig et al26 with the Building Better Caregivers (BBC)
intervention, which demonstrated small to medium effect sizes ranging from 0.30
to 0.56 for these outcomes. Estimating a small effect size (0.40), statistical
power of 0.90, alpha level of 0.05, correlation among repeated-measures of 0.99,
and 2-tail distribution, we determined that a sample size of 180 participants
(60 per group) would be sufficient to detect statistically significant
differences for between-group comparisons.
Eligible participants were family members of patients admitted for inpatient
rehabilitation who were expected to be discharged home with family. Because of
COVID-19 restrictions in place during much of the enrollment period,
participants were recruited via email by the study's research coordinator. The
study was explained to prospective participants in a phone or email exchange and
those interested in participating were asked to provide written informed
consent.
Those who consented were asked to answer questions about their demographics and
complete baseline surveys for each outcome measure. Participants who completed
and returned the baseline surveys were then randomly assigned to 1 of 3 groups,
described below. The sample was stratified on severity of patients’ brain injury
and caregiver relationship to the patient. Severity was determined by scoring on
the Disability Rating Scale measured at hospital admission (moderate ≤12; severe
≥11). Caregiver relationship was categorized as either parent, spouse or
significant other, or other relative (sibling, grandparent, etc.). An online
calculatora (www.graphpad.com) was used to generate a randomization assignment
spreadsheet to determine group assignments. The spreadsheet was prepopulated
with (2 × 3=6) tables reflecting each combination of stratification factors (eg,
severe injury and parent caregiver). Each table consisted of a randomized list
of group assignments (usual care [UC], Problem-Solving Training [PST], BBC) and
participants were assigned sequentially as they enrolled in the study.

INTERVENTIONS AND COMPARATORS

Based on input from the Family Caregiver Advisory Council, a group of family
members of former patients with ABI formed to help guide this project, we
selected PST and BBC as the best available interventions for comparison. Past
research has demonstrated the efficacy of both interventions, but only PST has
been trialed early after injury.29,30 PST is clinician-led, administered
one-on-one via phone calls, assigned readings, and practice assignments between
calls. PST teaches caregivers how to address problems and apply a specific
problem-solving technique (“ABCDEF”) that includes Assessing, Brainstorming,
Consideration, Development, Evaluation, and Flexing to address problems
identified by the caregiver. The training aims to teach caregivers to apply the
strategy in the present and the future, to whatever problems they choose. The 6
PST sessions last for 30-60 minutes and are usually scheduled once a week over 6
weeks.
BBC was developed for caregivers of patients with dementia and has been adapted
for caregivers of patients with ABI.26,27 BBC is a variant of the Stanford
Chronic Disease Self-Management Program, developed in the late 1970s and used
worldwide by individuals managing chronic health conditions and disability.31,32
Members of our ABI caregiver peer support team were trained and certified in
delivery of the BBC. Based on their experience and feedback from the Family
Caregiver Advisory Council, adaptations were made to reflect concerns,
challenges, and resource needs relevant to families during the acute and early
stage of recovery. These changes were approved by the Center for Self-Management
Resources.

BBC INTERVENTION MODIFICATIONS DUE TO COVID-19 PANDEMIC PRECAUTIONS

The BBC intervention is usually delivered in six 60- to 90-minute group
workshops comprised of 8-12 family caregivers and led by certified peer
facilitators with experience as family caregivers of patients with ABI. Because
of COVID-19 precautions, we were unable to convene in-person workshops, so
resorted to the use of the secure Zoomb videoconferencing app. We received very
positive feedback from participants on the accessibility and value of the Zoom
workshops. However, we also faced challenges scheduling group sessions with
caregivers, even on Zoom, because of the intense demands on their time and
stresses of their loved ones’ injuries. These challenges forced us to convert
the intervention from a group workshop format to one-on-one sessions conducted
between individual caregivers and one of 3 peer facilitators. The content of the
sessions followed key components of the BBC intervention—problem-solving; making
an action plan; managing stress and fatigue, difficult care partner behavior,
and difficult thoughts or emotions. Participants were also encouraged, though
not required, to participate in ongoing peer support opportunities offered by
the ABI program as a supplement to the more limited social support available
with the one-to-one intervention.
All participants, including those randomized to UC, received the usual discharge
planning and family support services offered by the ABI program. These services
include nurse instruction in care routines, case management support for
discharge, peer support services, referral to family counseling and community
services as indicated, and general information resources about brain injury. All
participants also had access to the online peer support communityc created for
ABI caregivers (facebook.com/shepherdbi.peers).

OUTCOME MEASURES

We examined 3 outcomes for caregivers: (1) stress and burden (Kingston Caregiver
Stress Scale [KCSS]33); (2) depressive symptoms (Patient Health Questionnaire
[PHQ-9]34), and perceived caregiving self-efficacy (Revised Self-Efficacy Scale
for Caregivers [RSES]).35 All 3 measures have been used in previous research
with caregivers of patients with ABI. Outcome measures were administered at 4
time points: time of enrollment in the study (Time point 1), within 72 hours of
discharge from the inpatient rehabilitation program (Time point 2), and
approximately 30 and 90 days after discharge (Time points 3 and 4). All 3
instruments were administered at each time point via an email-initiated survey
using REDCap.d Participants received a $25 Amazon gift card for initiating
outcome surveys at each time point, regardless of whether they completed all 3
instruments.

DATA ANALYSIS

Missing data were imputed via regression modeling36, 37, 38, specifically growth
curve models, to predict all missing data for the 4 time points. For each
outcome measure, growth curve models estimated the initial status (intercept)
and growth over time (slope) for every participant. These individualized
estimates were then used in a simple linear regression formula: Y = b + mX,
where b represents intercept estimates, m represents slope estimates, and X
represents time from baseline. Each participant's individualized
outcome-specific estimates were used in the formula to calculate all their
missing data for our 4 time points.
Once missing data were imputed, repeated-measures factorial analysis of variance
(ANOVA) was used to evaluate group changes over time (3 groups × 4 time points)
for each outcome measure. In cases of significant effects, post hoc analyses
were carried out comparing each intervention group separately to UC. We also
identified “responders” based on minimal clinically important differences
(MCID). Because there are no published MCIDs for the measures used and
population studied, a distribution method of 0.5 SDs of the change score from
Timepoint 1 (baseline) to Timepoint 4 (3 months after discharge) was used to
calculate MCID.

RESULTS

Figure 1 presents the CONSORT diagram outlining study enrollment. Of 817
potentially qualified admissions during the 22-month study enrollment period
(February 14, 2021, to November 30, 2022), 780 (95%) met inclusion criteria. Of
these eligible candidates, 308 (39%) declined participation and research staff
were unable to contact 303 (39%) candidates, in part owing to restricted access
in response to COVID-19. As a result, 169 participants were enrolled in the
study and randomly assigned to one of the 3 groups. For the intervention groups,
34 of 55 (62%) BBC participants and 34 of 56 (61%) PST participants completed at
least 3 intervention sessions; only 52% completed all 6 intervention sessions.
An additional 13 participants in each group (23% of the total assigned) failed
to initiate any intervention sessions after randomization. Mortality played a
role in initiation by caregivers. Six patients passed away during the study: 3
before discharge and 3 after returning home. Four patients had been assigned to
1 of the 2 intervention groups; however, none of their caregivers initiated
training. Only 53% of study participants completed outcome measure surveys at
all 3 follow-up time points. All 169 participants were included in the
“intent-to-treat” data analysis.
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Fig 1. CONSORT flow diagram.

Table 1 presents the demographic characteristics for all study participants and
patients combined and for each comparator group. Only 2 significant differences
were noted between comparator groups: (1) patient length of hospital stay was
lower for the UC than that for the PST group (p=.05) and a higher proportion of
caregivers were women in the UC group (p=.03).

Table 1. Demographic characteristics of study participants (N=169).

CharacteristicAllGTPSTUCSign TestP valueN=169555658(t or χ2)Patient Severe
injury, n (%)101 (60)33 (60)32 (57)37 (64)χ2=0.61.74 Disorder of consciousness,
n (%)21 (12)8 (15)6 (11)7 (12)χ2=0.38.83 Mean length of stay ± SD
(d)52±28.853±26.447±26.6t=1.261.0553±26.456±32.6t=0.54.2956±32.647±6.6t=1.67.05* Mean
age ± SD (y)41±16.440 ± 16.242±17.6t=0.46.3240 ±
16.241±15.5t=0.11.4641±15.542±17.6t=0.37.34 Men, n (%)125 (74)40 (73)38 (68)47
(81)χ2=2.64.27 White, n (%)111 (66)36 (66)42 (75)33 (57)χ2=0.12.94Caregiver Mean
age ± SD
(y)51±11.650±11.652±10.6t=0.75.2350±11.650±12.4t=0.02.4950±12.452±10.6t=0.70.24 Women,
n (%)142 (84)48 (87)41 (73)53 (91)χ2=7.04.02* White, n (%)103 (61)35 (64)36
(64)32 (55)χ2=1.58.54 Relationshipχ2=4.28.37 Parent, n (%)68 (40)23 (42)21
(38)24 (41) Spouse/partner, n (%)84 (50)28 (51)31 (55)25 (43) Other, n (%)17
(10)4 (7)4 (7)9 (16)Payor sourceχ2=1.57.81 Private insurance, n (%)138 (82)44
(80)48 (86)46 (79) Medicaid/public, n (%)13 (8)5 (9)4 (7)4 (7) Other, n (%)18
(10)6 (11)4 (7)8 (14)

⁎
P≤.05.
We computed ANOVA for time and group effects for our 3 outcome measures. Results
reveal significant (p<.001) time effects for all 3 measures. No statistically
significant group × time interaction was observed indicating that changes over
time were similar for each group. There was, however, a significant group effect
(p=.040) for caregiver stress (KCSS). Post hoc test revealed a significant
difference between the PST and UC groups (p=.045). The UC group remained
significantly higher in their KCSS score over the course of the study, compared
to the PST group (see fig 2). Games-Howell test was used for post hoc analysis
as Levine's test of equality of variances was violated.
1. Download: Download high-res image (317KB)
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Fig 2. Results for Kingston Caregiver Stress Scale.

Fig 2, Fig 3, Fig 4 present the mean scores for the 3 caregiver outcome measures
(KCSS, PHQ-9, RSES) at each time point. The P values for differences between the
means of the UC group and each intervention group are also noted. These P values
are based on post hoc, one-way ANOVA using Games-Howell (where homogeneity of
variance was violated) or Tukey HSD corrections. The cut-point between
“moderate” and “severe” stress on the KCSS and “mild” and “no” depressive
symptoms on the PHQ-9 are also noted.
As shown in figure 2, statistically significant differences were found in the
KCSS between PST and UC groups at T2 (p=.049; mean difference [MD]=3.7; d=.45)
and T3 (p=.039; MD=4.6; d=.46). No significant differences were noted between
groups on the PHQ-9 (fig 3) or RSES (fig 4). However, the difference between BBC
and UC groups for the RSES approached significance at T3 (p=.054; MD=8.9;
d=.44).
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Fig 3. Results for Patient Health Questionnaire 9.

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Fig 4. Results for Revised Self-Efficacy Scale.

Table 2 presents unplanned hospital readmissions and emergency department visits
in the first 30 days post discharge for patients of family caregivers enrolled
in the study. Overall, unplanned readmissions were quite low (5.3%), which is
characteristic of the host hospital across all inpatient rehabilitation
programs. There were notable differences between groups in the number of
patients with unplanned readmissions and the average number of days
rehospitalized. However, the differences were not statistically significant
(p=.581)

Table 2. Health outcomes for patients.

Empty CellAllBBCPSTUC30-day unplanned rehospitalizations No. of patients9
(5.3%)3 (5.5%)1 (1.8%)5 (8.6%) Mean of days5.84.727ED visits No. of
patients12534

Abbreviations: ED, emergency department; No. number.

DISCUSSION

We addressed 3 research questions in this study: (1) would participants engage
in interventions to improve caregiving; (2) were the interventions effective;
(3) did the interventions affect patient health outcomes?

WOULD CAREGIVERS ENGAGE?

Levels of engagement as measured by actual versus targeted enrollment,
intervention completion, and loss to follow-up were disappointing but not
surprising. We targeted enrollment at 30% of eligible candidates based on a
recently completed study at the same hospital, also conducted during the
COVID-19 pandemic, that involved delivery of 1-to-1 peer mentoring to family
caregivers during the inpatient rehabilitation stay39; we achieved a 33%
enrollment rate in the peer mentoring study compared to 22% in the present
study. With respect to intervention completion, 84% of participants in the peer
mentoring study39 completed the intervention compared to only 61% in the present
study. Perhaps more troubling was the sizable percentage of participants (23%)
who did not initiate the intervention in the present study compared with only 1
participant in the peer mentoring study. It may be that the interventions were
perceived to be too intrusive into the already chaotic lives of caregivers as
suggested by many comments from participants that they had difficulty freeing up
time to participate in 6 one-hour-long sessions.
Similarly, data collection loss to follow-up was only 27% in the peer mentoring
study compared with 47% in the present study. However, a key difference in the
method used for follow-up may account for the difference. Telephone interviews
between the primary caregiver and a trained interviewer were employed compared
to an email-initiated survey in the present study.

WERE THE INTERVENTIONS EFFECTIVE?

The PST intervention appears to be moderately effective (d=.45) in reducing
caregiver stress and the improvements noted remained through the 90-day
follow-up time point. The BBC intervention had positive effects, most notably on
improving caregiver self-efficacy, but several changes required in intervention
delivery (virtual vs in-person, individual vs support group) may have muted
overall effectiveness. The changes made were necessitated by the difficulties of
delivering a structured, group intervention during the inpatient stay, which may
have been the case regardless of COVID-19 restrictions. Delivery must be
flexible and a group intervention is likely not practical. Results from the peer
mentoring trial34 and findings of positive effects of the PST intervention
suggest a one-to-one, peer-delivered version of the PST intervention might be a
viable and effective option, assuming caregiver peers are available as
interventionists.

DID THE INTERVENTIONS AFFECT PATIENT HEALTH OUTCOMES?

Both interventions were associated with lower rehospitalizations and hospital
days, but the differences were not statistically significant. Given the
relatively low incidence rate of unplanned hospitalizations, a much larger
sample is likely needed to determine any statistically reliable association.
Further, dyadic analyses could identify whether caregiver response (ie, change
in outcomes after intervention) was associated with patient health outcomes,
providing a more nuanced understanding of the effects of caregiver well-being on
patient health.

STUDY LIMITATIONS

The most notable limitation of the present study was not achieving the desired
sample size owing to restrictions imposed by the COVID-19 pandemic. In addition
to not enrolling our desired sample, the percentage of participants in the
intervention groups who failed to initiate treatment or complete the optimal
“dose” of 6 sessions was disappointingly low, further diminishing the
effectiveness of the interventions. In addition, several modifications to the
BBC intervention were required in response to COVID-19 restrictions on
face-to-face contact. These factors no doubt negatively affected “power” of our
statistical analysis.
Rate of dropouts and those lost to follow-up was also much higher than expected,
with only half of the enrolled participants completing all outcomes surveys.
Many of these losses may be attributed to disruptions brought on by COVID-19.
However, the poor follow-up response may also be due to the manner of data
collection employed. Rather than telephone interviews, we relied on
email-initiated surveys, with 3 follow-up emails to prompt responses for those
who did not complete the survey. Although electronic surveys improve efficiency
of data collection and could improve compliance by offering participants greater
flexibility in responding, they may still require telephone contact to maintain
participant engagement and provide reminders and troubleshooting when technical
difficulties arise.
Finally, it should be noted as a limitation that study enrollment was initiated
before registration of the trial in a national trial registry, as is customary.
Participation in the trial was, however, limited to caregivers of patients
admitted to the host hospital, not the larger population of caregivers. As such,
the generalizability of study findings is limited.

CONCLUSIONS

Positive findings were noted despite the several limitations of the present
study. The positive findings support continued research into delivery of
interventions during the acute phase of ABI to mitigate caregiver stress,
improve problem-solving strategies, and instill caregiver self-efficacy. Results
suggest that interventions must be flexible in delivery and tailored to
individual caregiver needs and concerns. Given the effectiveness of the PST
intervention in reducing caregiver stress, and positive if transitory effect of
the BBC intervention on caregiver self-efficacy, a peer-led variation of the PST
intervention may be a promising next step for research in this area.

SUPPLIERS

* a.
GraphPad - available at https://www.graphpad.com/quickcalcs/randMenu/
* b.
Zoom - version 5.17.11 (31580); available at https://zoom.us
* c.
Facebook - available at https://www.facebook.com/shepherdbi.peers/
* d.
REDCap - version 13.7.2; available at https://redcap.shepherd.org/index.php

DISCLOSURES

The investigators have no financial or nonfinancial disclosures to make in
relation to this project.
Recommended articles

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CITED BY (0)

The results were previously reported at a symposium presented at the 2023 Annual
Meeting of the American Congress of Rehabilitation Medicine, November 2, 2023,
Atlanta, GA.
This research was supported by a grant from the National Institute of
Disability, Independent Living, and Rehabilitation Research (NIDILRR), US
Department of Health and Human Services (award no. 90IFRE0026). Any opinions
expressed by the authors are their own and do not represent policies of NIDILRR
or the US government.
Clinical Trial Registration No.: NCT06126549.
© 2024 The Authors. Published by Elsevier Inc. on behalf of American Congress of
Rehabilitation Medicine.

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