639357

research-article2016
CRE0010.1177/0269215516639357Clinical RehabilitationBaker et al.

CLINICAL
Original Article REHABILITATION

Clinical Rehabilitation

Caregiver outcomes and 1­–16

© The Author(s) 2016
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DOI: 10.1177/0269215516639357

review of the traumatic brain injury cre.sagepub.com

and spinal cord injury literature

Anne Baker1, Samantha Barker2, Amanda Sampson2

and Clarissa Martin3

Abstract
Aim: To identify factors reported with negative and positive outcomes for caregivers of the traumatic
brain injury and spinal cord injury cohorts, to investigate what interventions have been studied to support
carers and to report what effectiveness has been found.
Methods: Scoping systematic review. Electronic databases and websites were searched from 1990 to December
2015. Studies were agreed for inclusion using pre-defined criteria. Relevant information from included studies
was extracted and quality assessment was completed. Data were synthesised using qualitative methods.
Results: A total of 62 studies reported caregiver outcomes for the traumatic brain injury cohort; 51
reported negative outcomes and 11 reported positive outcomes. For the spinal cord injury cohort,
18 studies reported caregiver outcomes; 15 reported negative outcomes and three reported positive
outcomes. Burden of care was over-represented in the literature for both cohorts, with few studies
looking at factors associated with positive outcomes. Good family functioning, coping skills and social
support were reported to mediate caregiver burden and promote positive outcomes. A total of 21
studies further described interventions to support traumatic brain injury caregivers and four described
interventions to support spinal cord injury caregivers, with emerging evidence for the effectiveness of
problem-solving training. Further research is required to explore the effects of injury severity of the care
recipient, as well as caregiver age, on the outcome of the interventions.
Conclusion: Most studies reported negative outcomes, suggesting that barriers to caregiving have been
established, but not facilitators. The interventions described to support carers are limited and require
further testing to confirm their effectiveness.

Keywords
Burden of care, carers, caregiver, spinal cord injury, systematic review, traumatic brain injury

Received: 20 August 2015; accepted: 19 February 2016

1School of Allied Health, Australian Catholic University, Corresponding author:

Melbourne, Australia Dr Anne Baker, Occupational Therapy, Australian Catholic
2Institute for Safety, Compensation and Recovery Research, University, Locked Bag 4115, Fitzroy, Victoria 3065, Australia.
Monash University, Melbourne, Australia Email Anne.Baker@acu.edu.au
3Department of Physiotherapy, Monash University,

Melbourne, Australia

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2 Clinical Rehabilitation 
Introduction
Informal or unpaid care refers to care that is pro-
vided by family and friends to support people of all
ages who are restricted in their activities of daily
living through disability.1 Carers play an important
role in the lives of the care recipient, often at the
expense of their own health and wellbeing. It has
been estimated that caregivers are significantly
more likely to have a disability themselves, to
loose gainful employment and to have household
incomes in the lowest quintiles, when compared
with their non-caring counterparts.2
Despite the potentially negative impacts of car-
egiving, many people feel obliged to take on this
role. One of the most common reasons cited for
providing care is the sense of family responsibil-
ity.2 This may develop slowly over time, as is
reported in the case of chronic progressive diseases
such as dementia. Alternatively, the caregiver role
may be thrust upon a person as a result of a trau-
matic accident. Leading causes of traumatic acci-
dents include falls, road transport accidents and
assault. Traumatic brain injury and spinal cord
injury are among the leading causes of injury sus-
tained as a result of traumatic accidents in the
Western world.2 Although not studied together fre-
quently, the two cohorts provide an interesting
point of comparison, with regards to rehabilitation
requirements and outcomes.
In terms of clinical rehabilitation, these two
groups of patients represent two conditions of
sudden onset, one affecting the brain and the other
not, but both causing marked long term problems.
People with a traumatic brain injury show initial
improvement over the first year or two post-
injury, but go on to provide considerable burden
in terms of emotional and cognitive care required,
often owing to difficulties with executive func-
tioning. This is in contrast to people with a spinal
cord injury, who pose a heavy burden in terms of
hands-on physical care, but whose cognition
remains largely intact. The rehabilitation trajec-
tory for people who sustain a traumatic brain
injury or a spinal cord injury does vary. However,
both types of injuries frequently result in at least
one or more restrictions in self-care, domestic
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and/or productive activities of daily living, thus
requiring care to be sustained.
For informal care to be sustained, the outcome
of the caregiving role needs to be positive.
Systematic reviews about caregiving outcomes do
exist for the stroke3 and dementia4 cohorts, but as
neither of these conditions is associated with a
traumatic accident, these reviews may not offer
adequate information for the traumatic brain injury
and the spinal cord injury cohorts. Therefore, the
aims of this systematic review were as follows.
Aim
The primary question was to determine the
following.
1. What factors have been reported with a nega-
tive or a positive outcome for caregivers of the
traumatic brain injury and the spinal cord
injury cohorts?
The secondary questions were to determine the
following.
2. What interventions are described in the litera-
ture to support caregivers of the traumatic
brain injury and the spinal cord injury cohorts?
3. Of the interventions described in the literature
to support caregivers of the traumatic brain
injury and the spinal cord injury cohorts, what
effectiveness has been found?
In considering the results of this systematic review,
data will be synthesised to draw some general con-
clusions across the two cohorts.
Methods
Search strategy
Four electronic databases (CINAHL, Cochrane
Library, Medline and PsycINFO) were searched
from 1990 to December 2015, with an English lan-
guage restriction. Websites of organisations known
to support carers of the traumatic brain injury and
the spinal cord injury cohorts were also searched.
Baker et al. 3
Relevant combinations of the search terms and
spelling derivatives were used, as shown in the
Appendix, available online. The search strategy
was first trialled and used in PsycINFO, and then
adapted for use in each subsequent electronic data-
base and website.
Results were downloaded into a bibliographic
management software program (EndNote X7),
and duplicate studies were deleted. Given the high
number of studies identified, only one author
screened each of the studies by title and abstract to
determine eligibility to be included in the review,
using predetermined criteria. Once the final pool
of included studies had been identified, a second
author confirmed the eligibility of each of the
studies. If sufficient information was not described
to make a decision based on title and abstract
alone, the full text of the article was obtained.
Finally, a review of the reference list from each of
the included studies was completed in order to
identify any articles that may have been missed by
the literature search.
Inclusion/exclusion criteria
The following inclusion criteria were applied.
Population. Studies in which caregivers provided
care to an adult (⩾18 years) with a traumatic brain
injury or spinal cord injury were included.
Intervention.  For the primary question, intervention
criteria were not relevant. For the secondary ques-
tions, studies in which intervention was provided
through carer services, carer support programmes,
group support, online support, 1:1 support and peer
support were included.
Outcome. The outcomes of ability to care, car-
egiver burden, caregiver emotional distress, car-
egiver preparedness, caregiver strain, cost, family
functioning and resilience were included.
Research design. All research designs, including
systematic reviews, primary studies and discus-
sion/case study examples that had been peer-
reviewed were included.
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Quality assessment
For the primary question, quality assessment was
deemed not to be relevant. For the secondary ques-
tions, quality assessment was completed using The
Downs and Black Instrument.5 Scores on The Downs
and Black Instrument range from 0–31, with a score of
zero used to indicate a low quality study and a score of
31 indicating a high quality study.5 Level of evidence
was determined using The Australian National Health
and Medical Research Council Guidelines.6
Data extraction
Data extraction was completed by one reviewer and
cross-checked by a second reviewer. Separate tables
were created for the traumatic brain injury and the spi-
nal cord injury cohorts. For the primary aim, data were
extracted and summarised pertaining to author (and
year) of study, and factors reported with if the car-
egiver outcome is negative or positive. For the second-
ary aims, data were extracted and summarised
pertaining to author (and year) of the study, country in
which the study was conducted, details of the inter-
vention and details of the intervention’s effectiveness.
Data analysis
Data were synthesised qualitatively, by using a nar-
rative analysis. This method of analysis involved
coding information from within individual studies
and grouping them into like categories, where suffi-
cient similarity existed between caregiver outcomes
and caregiver interventions to allow this. Data were
analysed separately for the traumatic brain injury
and the spinal cord injury cohorts, and then com-
pared to identify similarities and differences.
Results
A flowchart of the number of studies identified and
screened is presented in Figure 1. Agreement was
reached between two of the reviewers for all of the
105 included studies, as well as the scores awarded
for quality assessment and level of evidence. From
the process of website screening, no further infor-
mation was obtained.
4 Clinical Rehabilitation 

Figure 1.  Number of studies identified and screened for inclusion or exclusion.

Primary aim spinal cord injury cohort; 15 reported negative out-

What factors have been reported with
a negative or a positive outcome for
caregivers of the traumatic brain injury
and the spinal cord injury cohorts?
Factors reported with a negative or a positive out-
come for caregivers of the traumatic brain injury and
the spinal cord injury cohorts are summarised in Table
1. A total of 62 studies reported caregiver outcomes
for the traumatic brain injury cohort; 51 reported neg-
ative outcomes, and 11 reported positive outcomes. A
total of 18 studies reported caregiver outcomes for the
comes, and three reported positive outcomes.
Negative outcomes
In order of frequency (with number of studies in
brackets), the top three factors reported with a
negative caregiving outcome for the traumatic
brain injury cohort were: high levels of caregiver
burden (17); poor family functioning (16); and
poor mental health and high levels of caregiver
emotional distress (11). For the spinal cord injury
cohort, the top three factors reported were: high
levels of caregiver burden (7); poor caregiver

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Baker et al. 5

Table 1.  Factors reported with negative and positive outcomes for caregivers of the traumatic brain injury and the
spinal cord injury cohorts.
Traumatic brain injury Spinal cord injury

  Positive Negative Positive Negative

Adjustment Dickson (2012)

Elliott (2014)
Hui (2007)
Anxiety Coleman (2013)
Burden Allen (1994) Chan (2000)
Bayen (2013) Coleman (2013)
Blankfeld (1999) Gajraj-Singh (2011)
Davis (2009) Middleton (2007)
Gary (2009) Nogueira (2012)
Guevara (2015) Post (2005)
Katz (2005) Rattanasuk (2013)
Knight (1998)  
Leibach (2014)  
Manskow (2015)  
Marsh (1998a,b,c) (2000)  
Nabors (2002)  
Nonterah (2013)  
Smith (1998)  
Coping skills Anderson (2015) Beauregard Dickson (2012)
Blais (2005) (2010)  
Calvete (2012)  
Depression Dreer (2007)
Emotional Anderson (2002), (2009), Manigandan (2000)
distress (2013) Middleton (2007)
Davis (2009)  
Gervasio (1997)
Hall (1994)
Inzaghi (2005)
Kreutzer (2009)
Minnes (2000)
Nonterah (2013)
Sander (1997)
Employment Ellenbogen (2006)
Family Arango-Lasprilla Anderson (2002), (2009), Simpson Kolakowsky-Hayner
functioning (2012) (2013) (2013) (1999)
Coy (2013) Douglas (1996)
Doyle (2013) Gan (2006)
Perrin (2013) Gregório (2011)
Groom (1998)
Hyatt (2015)
Kolakowsky-Hayner (1999)
Kosciulek (1998)
Kreutzer (1994a), (1994b)
Leibach (2014)
Ponsford (2003)
Schonberger (2010)
Tramonti (2015)
(Continued)

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6 Clinical Rehabilitation 

Table 1. (Continued)
Traumatic brain injury Spinal cord injury

  Positive Negative Positive Negative

Mastery Kosciulek (1997)  

Mental health Douglas (2000)  
  Ennis (2013)  
  Gillen (1998)  
  Harris (2001)  
  Leibach (2014)  
  Moules (1999)  
  Nonterah (2013)  
  Norup (2015)  
  Ponsford (2003)  
  Rivera (2007)  
  Schonberger (2010)  
Quality of life Gulin (2014) Chronister (2010) Boschen (2005)
  Gregório (2011) Coleman (2013)
  Kitter (2015) Nogueira (2012)
  Kratz (2015)  
  Leibach (2014)  
  Moules (1999)  
  Vogler (2014)  
Social support  Ergh (2002) Rattanasuk  
Hanks (2007) (2013)  
Strain Boycott (2013)  
  Gregório (2011)  
  McPherson (2000)  

Note: Only the first author of each study has been included in the table for ease of reading. Full citations are available as Supplementary Material,
available online.

adjustment (3); and poor caregiver quality of life
(3). For both cohorts, burden of care (the factor
most commonly reported with a negative caregiv-
ing outcome) was grossly referred to as the per-
ceived impact that caregiving roles and
responsibilities had on a carer’s life. High burden
of care was associated with a poor level of func-
tioning of the care recipient.
Family functioning and coping skills were
reported to improve outcomes by reducing car-
egiver burden. Social support was reported to
give both cohorts of caregivers a broader focus,
beyond caring for someone with an injury. Social
support was also reported to improve problem-
solving skills, when interacting with caregiving
peers.

Positive outcomes Secondary aims

The top three factors reported with a positive car- What interventions are described in the
egiving outcome for the traumatic brain injury literature to support caregivers of the
cohort were: good family functioning (4); good
traumatic brain injury and the spinal
coping skills (3); and good social support (2). For
the spinal cord injury cohort, the top three factors cord injury cohorts?
reported were: good family functioning (1); good A total of 21 interventions were described in the
coping skills (1); and good social support (1). literature to support caregivers of the traumatic

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Baker et al. 7
brain injury cohort (see Table 2) and four for the
spinal cord injury cohort (see Table 3).
Traumatic brain injury
Of the 21 interventions, 11 targeted the caregiver
directly for intervention. Interventions described in
the caregiver-focused studies shared common prin-
cipals such as education, empowerment, peer men-
toring and peer support. Some of these interventions
had specific names (e.g. the ‘Family-to-Family
Link Up Program’ (f2f Link Up) provided by
Butera-Prinz11 and colleagues), whereas others
were reported on in more general terms (e.g. the
‘outpatient social work liaison programme’ pro-
vided by Albert7 and colleagues). All caregiver-
focused interventions were delivered in an
outpatient/community setting. There was signifi-
cant variability reported in the frequency, duration
and total number of intervention sessions, as well
as the demographics of the caregivers who partici-
pated in these interventions.
The remaining 10 studies targeted the care
recipient for intervention. These studies reported
the underlying principal that if intervention
improved the level of independence and function-
ing of the care recipient, then involvement from the
caregiver would be lessened and the caregiving
outcome thereby improved. All interventions
reported in these studies included an element
designed to improve the executive functioning of
the care recipient. Strategies included behaviour
management, community re-integration, coping
skills training, neuropsychological rehabilitation
and use of adaptive devices.
Spinal cord injury
Each of the four interventions targeted the car-
egiver. Three of the four studies involved problem-
solving training, while the other study used peer
support intervention. Problem-solving training was
used to help caregivers to negotiate the practical
demands of providing care to a person with a spinal
cord injury. Caregivers were taught how to gener-
ate solutions to commonly encountered problems
(e.g. transferring a person from a wheelchair into a
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vehicle), and were taught how to search through
each of the possible solutions (e.g. hoist, slide-
board, manual assist) in order to choose the right
one to meet their needs.
Of the interventions described in the
literature to support caregivers of the
traumatic brain injury and the spinal
cord injury cohorts, what effectiveness
has been found?
Results could not be appropriately pooled owing to
dissimilarity across the studies. Level of evidence
and quality of each of the studies is summarised in
Table 2 (traumatic brain injury) and Table 3 (spinal
cord injury).
Traumatic brain injury
In each of the 11 studies reported to target the car-
egiver for intervention, caregivers demonstrated an
improvement on one or more outcome measures
immediately after the intervention period. Just over
half of these studies also provided follow-up,
where gains made by the caregivers were reported
to be maintained between 3–24 months after the
intervention period. Looking at the quality of the
studies, Hanks (2012),17 one of the highest quality
studies (24/31), provided Level II evidence. In this
study it was found that ‘mentored’ caregivers dem-
onstrated greater community integration than the
‘non-mentored’ control group at 24 months post-
intervention. One of the lowest quality study
(11/31) provided Level IV evidence.13 Couchman
(2014)13 concluded that ‘Multifamily Group
Therapy’ helped caregivers to ‘find their place in
the world’ after brain injury (qualitative data only).
Less effective results were reported in the stud-
ies that targeted the care recipient for intervention.
Of the 10 studies, six reported an improvement on
one or more outcome measures immediately after
the intervention period. Only two studies provided
long-term follow-up. Backhaus (2010),8 a high
quality study (24/31), provided Level II evidence.
It was found that caregivers in the ‘Brain
Injury Coping Skills’ group showed significantly

Table 2.  Interventions described to support carers of the traumatic brain injury cohort and their effectiveness.
Study (country), Caregiver or care Interventions/services/groups, sample characteristics
sample size recipient focused
Albert (2002)7 Caregiver Outpatient social work liaison programme:
(America), n = 56 •• Gender (≈70% female); average age of 50 years,
equal proportion of spouse and parent caregivers
•• Demographics of care recipient not provided
Backhaus (2010)8 Care recipient Outpatient ‘brain injury coping skills’ group:
(America), n = 40 •• Gender (≈80% female); average age of 46 years,
relationship to care recipient not provided
•• Gender of care recipient (≈70% male); average age
of 40 years, 3–12 months post-injury (severity not
specified)
Bowen (2001)9 Care recipient Outpatient neuropsychological rehabilitation:
(UK), n = 96 •• Gender (≈80% female); average age of 40 years,
greater proportion of spouse than parent
caregivers
•• Demographics of care recipient not provided
(except average length of coma <6 hours)
Brown (1999)10 Caregiver Outpatient distance education and caregiver support
(Canada), n = 91 groups:
•• Gender (≈88% female); average age of 48 years,
equal proportion of spouse and parent caregivers
•• Gender of care recipient (≈74% male); average
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age of 40 years, 2.4 years post-injury (extremely
severe TBI, as per PTA duration)
Butera-Prinz Caregiver Outpatient ‘Family-to-Family Link Up Program’ (f2f
(2010)11 Link Up):
(Australia), n = 46 •• Gender (not specified); average age not specified,
equal proportion of spouse and parent caregivers
•• Gender of care recipient (≈83% male); ‘adult’
age, 4–8 years post-injury (slow to recover/highly
dependent)
8
Effectiveness QA (/31)
LoE (I–IV)
•• The social work liaison programme offered benefit •• 17
(immediately post-intervention, without long term •• III-2
follow-up) to caregivers on burden, satisfaction
and mastery outcomes (p = 0.05) when compared
with a group who did not receive the programme
•• The caregivers in the ‘brain injury coping skills’ •• 24
group showed significantly improved perceived •• II
self-efficacy (F = 14.16; p = 0.001) when compared
with a group who did not attend the group, and
maintained this improvement over time (at 3
months follow-up)
•• No differences (p > 0.01) were found between •• 18
the three caregiver groups: ‘early new service’ •• III-1
pre-discharge ‘late new service’ post-discharge;
‘control condition’ (existing services only) on
caregivers’ emotional distress and how well-
informed they felt to cope at 6 months postinjury
•• Caregivers in both types of group (‘telephone •• 18
groups’ and ‘onsite groups’) showed a statistically •• III-2
significant improvement in mood scores at 6
months post-injury (p < 0.05), and a trend toward
improvement in family functioning and caregiver
burden (not significant)
•• The opportunity to meet other caregivers in brief, •• 16
time-limited contacts with a trained facilitator was •• IV
found to be ‘useful’ (significance not provided) by
caregivers (immediately postintervention, without
long-term follow-up)
Clinical Rehabilitation 
 Baker et al.

Table 2. (Continued)
Study (country), Caregiver or care Interventions/services/groups, sample characteristics Effectiveness QA (/31)
sample size recipient focused
LoE (I–IV)

Carnevale Care recipient Community-based behaviour management •• No significant change (p > 0.05) in emotional •• 24
(2002)12 programme: distress and burnout was found between an •• II
(America), n = 27 •• Gender (not specified); average age of 48 years, ‘education only’ group and ‘an education plus
relationship to care recipient not provided behaviour management’ group of caregivers
•• Gender of care recipient (≈67% male); average immediately post-intervention and at 14 weeks
age of 38 years, 8.7 years postinjury (average LOC postintervention
>24 hours)
Couchman Caregiver Outpatient ‘multifamily group therapy’: •• ‘Multifamily group therapy’ made a contribution to •• 11
(2014)13 •• Gender (≈75% female); average age of 53 years, caregivers’ efforts to ‘find their place in the world’ •• IV
(Australia), n = 59 equal proportion of spouse and parent caregivers after brain injury (qualitative data only)
•• Gender of care recipient (≈71% male); average
age of 39 years, years post-injury not specified
(average inpatient rehabilitation stay of 109 days)
Damianakis Caregiver Community web-based platform: •• Caregivers found the sessions ‘helpful’ for •• 20
(2015)14 •• Gender (80% female); average age not specified, all managing the emotional distress of caring •• IV
(Canada), n = 10 parent caregivers (qualitative data only)
•• Gender of care recipient (70% male); average age
of 20 years, 2–12 years post-injury (various levels

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of abilities related to daily functioning)
Gerber (2015)15 Care recipient Community day-programme: •• Caregivers displayed decreased family burden •• 22
(Canada), n = 61 •• Caregiver demographics not provided (p = 0.006) after the 6 month intervention, as •• IV
•• Gender of care recipient (57% male); average age compared with pre-intervention
of 45 years, 7–10 years post-injury (‘moderate’ to
‘severe’ injury)

(Continued)
9
 10

Table 2. (Continued)
Study (country), Caregiver or care Interventions/services/groups, sample characteristics Effectiveness QA (/31)
sample size recipient focused
LoE (I–IV)

Geurtsen (2011)16 Care Recipient Community reintegration programme: •• Emotional burden and psychological health of •• 21
(Netherlands), •• Gender (≈68% female); average age of 48 years, caregivers improved significantly (p < 0.05) •• III-2
n = 41 greater proportion of parent than spouse at 1 year follow-up when patients followed a
caregivers residential community reintegration programme,
•• Gender of care recipient (≈71% male); average age as compared with waiting list control
of 23 years, 4.6 years post-injury (average initial •• Family functioning remained stable throughout the
GCS score of 7, average length of 26.8 days in 1 year intervention period (not significant)
coma)
Hanks (2012)17 Caregiver Outpatient peer mentoring: •• ‘Mentored’ caregivers demonstrated greater •• 24
(America), •• Gender (≈77% female); average age of 50.5 years, community integration (p = 0.03) than the •• II
n = 158 relationship to care recipient not provided ‘non-mentored’ control group at up to 2 years
•• Gender of care recipient (≈90% male); average age post-intervention
of 39 years, time post-injury not specified (average
initial GCS score of 9)
Kreutzer (2009)18 Care recipient Outpatient ‘Brain Injury Family Intervention’: •• Immediate post-treatment differences in •• 21
(America), •• Gender (≈66% female); average age of 50 years, caregivers’ psychological distress, satisfaction with •• IV
n = 106 greater proportion of spouse than parent life and functioning were not significant (p > 0.05)
caregivers •• No significant improvements (p > 0.05) were
•• Gender of care recipient (≈58% male); average age identified at the 3 months follow-up from baseline
of 41 years, 38.6 months post-injury (average initial
GCS score of 10)

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Kreutzer (2010)19 Care Recipient Outpatient ‘Brain Injury Family Intervention’: •• The intervention was perceived as helpful/that •• 19
(America), •• Gender (≈70% female); average age of 50 years, treatment methods helped to significantly facilitate •• IV
n = 152 greater proportion of spouse than parent achievement of caregiver goals (p < 0.05) at the
caregivers conclusion of the 10 week intervention period
•• Gender of care recipient (≈60% male); average (immediately post-intervention, without long term
age of 43 years, 30.2 months post-injury (average follow-up)
initial GCS score of 10)
Clinical Rehabilitation 
 Baker et al.

Table 2. (Continued)
Study (country), Caregiver or care Interventions/services/groups, sample characteristics Effectiveness QA (/31)
sample size recipient focused
LoE (I–IV)

Kreutzer (2015)20 Caregiver Outpatient ‘Brain Injury Family Intervention’: •• Caregivers showed an increase in met needs, •• 24
(America), •• Gender (72% female); average age of 52 years, greater satisfaction with services and reduced •• III-2
n = 108 greater proportion of spouse than parent burden post-intervention, as compared with
caregivers pretesting (p < 0.05)
•• Gender of care recipient (58% male); average age
of 43 years, 38 months post-injury (average initial
GCS score of 10)
Man (1999)21 Caregiver Community-based empowerment programme: •• At the conclusion of the programme, the •• 15
(China), n = 50 •• Gender (≈82% female); average age of 35–44 intervention was found to significantly empower •• IV
years, greater proportion of spouse than parent caregivers (p < 0.01) in the four postulated
caregivers empowering dimensions: efficacy, knowledge,
•• Demographics of care recipient not provided support and aspiration
•• Stability in caregiver empowerment was
maintained at 3 months follow-up; though there
were no further improvement (not significant)
Moriarty (2015)22 Caregiver Community ‘Veterans’ In-Home Program’: •• Caregivers in the ‘Veterans’ In-Home Program’ •• 30
(America), n = 81 •• Gender (94% female); average age of 42 years, showed significantly lower depressive symptom •• II
greater proportion of spouse than parent scores (p = 0.002) and lower burden scores (p =
caregivers 0.018), as compared with the control group, at
•• Gender of care recipient (100% male); average 3–4 month follow-up
age not specified, 10 years post-injury (‘mild’ to

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‘severe’ injury)
Palmisano Care recipient Community-based in-home neurobehavioural •• No changes (statistical significance not provided) •• 17
(2007)23 interventions: in caregiver burden were reported from •• IV
(Australia), n = 6 •• Gender (100% female); average age of 33 years, all participation in the programme at 1 month
spouse caregivers post-intervention
•• Gender of care recipient (100% male); average
age of 33 years, 3.4 years post-injury (resulting in
‘partial’ to ‘moderate’ disability)

(Continued)
11
 12

Table 2. (Continued)
Study (country), Caregiver or care Interventions/services/groups, sample characteristics Effectiveness QA (/31)
sample size recipient focused
LoE (I–IV)

Powell (2015)24 Caregiver Community telephone-based platform: •• Caregivers in the intervention group displayed •• 30
(America), n = •• Gender (82% female); average age of 50 years, more active coping (p = 0.020) and less emotional •• II
153 greater proportion of spouse than parent venting (p = 0.028), as compared with the control
caregivers group, at 6 months follow-up
•• Gender of care recipient (75% male); average
age of 42 years, years post-injury (‘moderate’ to
‘severe’ injury) not specified
Reddy (2012)25 Caregiver Outpatient ‘Family Intervention Package’: •• The ‘Family Intervention Package’ was found to be •• 15
(India), n = 90 •• Gender (≈70% female); average age of 18–37 significantly effective (p < 0.001) in bringing about •• III-1
years, greater proportion of spouse than parent changes in family functioning, as compared with
caregivers the waitlist control group, at 6 months follow-up
•• Gender of care recipient (≈70% male); average age
of 18–27 years, injury details not provided
Smith (2006)26 Care recipient Community rehabilitation: •• The community rehabilitation programme was •• 18
(UK), n = 41 •• Gender (≈77% female); average age of 48 years, significant in improving the level of met family •• III-1
greater proportion of spouse than parent need (p = 0.02), reducing family dysfunction (p =
caregivers 0.04) and improving carer emotional acceptance
•• Gender of care recipient (≈77% male); average (p = 0.05) when compared with a control group
age of 37 years, average of 45 months post injury (immediately post-intervention, without long-term
(severe TBI, as per LOC and PTA duration) follow-up)
Teasdale (2009)27 Care recipient Community-based ‘NeuroPage’ device: •• Significant reductions in strain were reported by •• 17

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(UK), n = 99 •• Gender (≈77% female); average age not specified, caregivers (Cohen’s d = 0.3–0.4) following the •• III-3
greater proportion of spouse than parent 7-week period of NeuroPage use
caregivers
•• Gender of care recipient (≈70% male); average
age of 38 years, average of 5 years post-injury
(severity not specified)

Note: Only the first author of each study has been included in the table for ease of reading.
QA: quality assessment; LoE: level of evidence; TBI: traumatic brain injury; PTA: post traumatic amnesia; LOC: loss of consciousness; GCS: glasgow coma scale.
Clinical Rehabilitation 
 Table 3.  Interventions described to support carers of the spinal cord injury cohort and their effectiveness.

Study (country), Caregiver or care Interventions/services/groups, sample Effectiveness QA (/31)

sample size  recipient focused characteristics
Baker et al.

LoE (I–IV)
Elliott (2008)28 Caregiver Outpatient ‘problem-solving training’, delivered •• A significant decrease in depression •• 23
(America), via videoconferencing: (p < 0.05) among caregivers receiving •• II
n = 122 •• Gender (≈88% female); average age not ‘problem-solving training’ was found,
specified, higher proportion of spouse than when compared with an ‘education
parent caregivers only control group’ at 6 months
•• Gender of care recipient (≈65% male); average post-intervention
age not specified, average of 32 months •• Caregivers receiving ‘problem-solving
post-injury (injury severity not specified) training’ also reported significant gains
in social functioning (p < 0.05) over time
Rivera (2003)29 Caregiver Outpatient ‘Project FOCUS’: •• Problem-solving interventions effectively •• 20
(America), •• Gender (female); 38 years of age, spouse alleviated caregiver emotional distress •• IV
n=2 caregiver and helped the caregiver to learn useful
•• Gender of care recipient (male); 41 years coping skills (qualitative data only)
of age, ‘several years’ post-injury (C4 immediately post-intervention, without
quadriplegia) long-term follow-up
Schulz (2009)30 Caregiver Outpatient psychosocial problem-solving •• Caregivers in the ‘dual-target treatment •• 26
(America), interventions: group’ reported improved (that is •• II
n = 173 •• Gender (≈75% female); average age of 53 improved by at least 0.5 SD from
years, higher proportion of spouse than baseline to follow-up) quality of life,
parent caregivers significantly fewer health symptoms and
•• Gender of care recipient (≈67% male); were less depressed when compared
average age of 54 years, 8 years post-injury with two other treatment groups

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(assistance required with an average of 5
ADLs per day)
Sheija (2005)31 Caregiver Outpatient support groups:
(India), n = 37 •• Gender (≈94% female); average age of 35
years, all spouse caregivers
•• Gender of care recipient (not specified);
average age of 43 years, average of 3–4 years
post-injury (injury severity not specified)
(‘caregiver-only treatment group’ and
‘information-only control treatment
group’) at 12 months post-intervention
•• Support groups were found to be •• 17
effective in improving caregivers general •• III-2
health (p = 0.003), mental health (p
= 0.001) and QoL (p = 0.001) at the
conclusion of the seven support group
sessions, when compared with the wait-
list control group

Note: Only the first author of each study has been included in the table for ease of reading.
13

QA: quality assessment; LoE: level of evidence; ADLs: activities of daily living; QoL: quality of life.
14 Clinical Rehabilitation 
improved perceived self-efficacy when compared
with the carers who did not attend the group, and
maintained this improvement at 3 months follow-
up. Contradictory results were reported in another
study at follow-up.16 Geurtsen (2011)16 showed
that the initial gains made by the caregivers
were not significantly maintained at 12 months
post-intervention.
Spinal cord injury
All three studies using problem-solving training
were found to be effective in promoting improve-
ment on one or more outcome measures immedi-
ately after the intervention period. With regards to
the quality of these studies, Schulz and colleagues
(2009)30 received the highest quality assessment
score of 26/31, and provided Level II evidence.
Schulz (2009)30 found that caregivers in the ‘dual-
target treatment group’ reported improved quality
of life, significantly fewer health symptoms and
were less depressed when compared with two other
‘treatment groups’ at 12 months post-intervention.
The study completed by Elliott and colleagues
(2008)28 was the second highest quality for the spi-
nal cord injury cohort (23/31), and provided Level
II evidence. A significant decrease in depression
was found among caregivers receiving ‘problem-
solving training’, when compared with a ‘control
group’ at 6 months post-intervention. Caregivers
who received ‘problem-solving training’ also
reported significant gains in social functioning
over time. Although providing a lower level of evi-
dence than Schulz (2009)30 and Elliott (2008)28,
Rivera and colleagues (2003)29 found Level
IV support for problem-solving interventions.
Problem-solving interventions were found to effec-
tively alleviate caregiver emotional distress and
helped the caregiver to learn useful coping skills.
Two of the three studies also provided follow-up,
where the gains made by caregivers were main-
tained 6–12 months after the intervention period.
Discussion
The results of this systematic review show that
there is strong, reproducible evidence concluding
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what factors are associated with a negative out-
come for caregivers. Burden of care, in particular,
is over-represented in the traumatic brain injury
and spinal cord injury literature. Social support
meanwhile has been reported essential to mediate
this caregiver burden and to enhance the outcomes
of caregiving, in part through the improvement of
caregivers’ problem-solving skills. It was surpris-
ing therefore that problem-solving training only
appeared once in the literature,24 describing inter-
ventions to support carers of the traumatic brain
injury cohort. Good evidence, however, was found
for this intervention with the spinal cord injury
cohort of caregivers. Finally, results from this sys-
tematic review suggest that in clinical practice car-
ers themselves, not the care recipient, should be
targeted for intervention. Further research is
required to explore the effects of injury severity of
the care recipient, as well as caregiver age, on the
outcome of the interventions described.
The responsibility to provide care after a trau-
matic accident is usually assumed by informal car-
egivers. For informal care to continue into the future,
the outcome of the caregiver role must be positive.
However, this review suggests that while literature
on the negative outcomes of caregiving is close to
reaching data saturation, positive caregiving out-
comes remain scarcely studied. This idea of needing
to invest more into positive outcomes for caregivers
after traumatic accidents is not a new idea, and is
consistent with other systematic reviews in the car-
egiving arena more broadly.3,4 In the stroke3 and
dementia4 cohorts for example, the suggestion has
already been made for rehabilitation researchers to
turn their attention towards interventions that create
a positive outcome for caregivers. Problem-solving
interventions were the most promising avenue iden-
tified from the results of this systematic review.
Given the success in the spinal cord injury cohort,
problem-solving training may be an avenue also
worth considering with the traumatic brain injury
cohort of carers, as well as in the caregiving arena
more broadly. It would be reasonable to assume that
caregivers of the traumatic brain injury cohort may
benefit from problem-solving training, given that
this approach to intervention would tie in with the
rehabilitation trajectory following traumatic brain
Baker et al. 15
injury. Typically after traumatic brain injury, consid-
erable burden exists for the caregiver in terms of
emotional and cognitive care. This is often owing to
deficits in the care recipient’s executive functioning,
which manifest in behaviours of concern. Powell
and colleagues (2015)24 have described a problem-
solving training protocol, which was found to pro-
mote more active coping and less emotional venting
for caregivers of the traumatic brain injury cohort.
With further testing, this protocol may be used with
caregivers to identify appropriate strategies in which
to manage these behaviours.
There are limitations associated with this sys-
tematic review, including the English language
restriction and the start-date for the search that
was imposed. It is possible that studies published
in languages other than English and that studies
that were published prior to the cut-off date of
1990 have not been represented in this systematic
review. Also, in this review, a conscious decision
was made to group together the entire spectrum of
injury severity. Caregivers of those with mild,
moderate and severe injuries were analysed as a
whole. This approach was adopted to reflect real-
world practice, where interventions are not cur-
rently provided to distinguish injury severity.
Although not investigated in this systematic
review, it may be that caregiver outcomes are dif-
ferent for different injury severity types, which
may limit the results of the review.
Alongside investigating whether injury severity
of the care recipient impacts on caregiver outcome,
a number of areas exist for further research.
Exploring caregiver outcomes for different age
groups of caregivers is one of these areas, as it may
be that the effectiveness of interventions on carer
and recipient outcomes are dependent on the age of
the caregiver. Also, the field of technological
advances is an area that needs to be further
explored. Websites and online resources are fre-
quently accessed by caregivers and are increas-
ingly becoming an important service-delivery
tool.2 Yet from the websites reviewed within, evi-
dence to suggest the sources of the online resources
was not described. Maintaining websites with up-
to-date resources, including links to the original
study, is important so that the quality and the
strength of the resource can be critiqued.
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Clinical messages
•• Burden of care is over-represented in the
literature for the traumatic brain injury
and spinal cord injury cohort of caregiv-
ers, with few studies looking at factors
associated with positive outcomes.
•• Of the interventions described in the lit-
erature to support caregivers, problem-
solving training offers a promising
direction for intervention.
Contributors
All authors were involved in drafting the manuscript,
and all four authors revised the article critically for
intellectual content. The authors have given approval for
the final version of this article to be published, and agree
to be accountable for all aspects of the work in ensuring
that questions related to the accuracy or integrity are
appropriately investigated and resolved.
Declaration of Conflicting Interests
The author(s) declared the following potential conflicts
of interest with respect to the research, authorship, and/or
publication of this article: ISCRR is a joint initiative of
WorkSafe Victoria, the Transport Accident Commission
and Monash University. The opinions, findings and conclu-
sions expressed in this publication are those of the authors
and not necessarily those of ISCRR or its partners.
Funding
The author(s) received no financial support for the
research, authorship, and/or publication of this article.
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