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Brain Injury, June 2009; 23(6): 535–547

A preliminary investigation of the brain injury family intervention:


Impact on family members

JEFFREY S. KREUTZER1,2,3, TARYN M. STEJSKAL1, JESSICA M. KETCHUM4,


JENNIFER H. MARWITZ1, LAURA A. TAYLOR5, & JENNIFER C. MENZEL6
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1
Department of Physical Medicine and Rehabilitation, 2Department of Neurological Surgery, 3Department of
Psychiatry, 4Department of Biostatistics, Virginia Commonwealth University, Richmond, VA, USA, 5Village Family
Psychiatry, Richmond, VA, USA, and 6Hunter Holmes McGuire Veterans Affairs Medical Center, Richmond,
VA, USA

(Received 23 September 2008; revised 25 February 2009; accepted 26 March 2009)

Abstract
For personal use only.

Primary objective: To evaluate the benefits of the Brain Injury Family Intervention (BIFI) for families of persons with
acquired brain injury and identify factors related to outcomes.
Research design: Pre-test, post-test design with outcomes measured immediately after and 3 months following intervention.
Methods and procedures: Family members and survivors participated in five 2-hour sessions over 10 weeks which included
discussions of typical effects of brain injury, coping with loss and change, managing stress and intense emotions, effective
problem-solving, setting reasonable goals and taking care of one’s self. Guided by principles of family systems theory (FST)
and cognitive behaviour therapy (CBT), the manualized treatment included educational, skill building and psychological
support components.
Main outcomes and results: Analysis of data derived from family members indicated a greater number of met needs and
perceptions of fewer obstacles to receiving services post-treatment and at 3 months follow-up. Before and after treatment,
unmarried caregivers reported more unmet needs. Family members of persons with longer acute care lengths of stay
reported more unmet needs and greater perceived obstacles to services. Post-treatment differences in family members’
psychological distress, satisfaction with life and functioning were not identified.
Conclusions: The investigation provided evidence that family members benefit from interventions designed to meet their
unique needs after brain injury. Uncertainties remain about the benefits of intervention to general family functioning and
life satisfaction.

Keywords: Family interventions, support systems, therapy

Introduction of survivors’ and family members’ needs. Briefer


rehabilitation stays also allow less time for neurobe-
A number of researchers have expressed concern
that rehabilitation lengths of stay are decreasing havioural recovery and discharge planning. Nine of
[1–3], especially with reduced reimbursement from every 10 patients are being discharged to home [2],
managed care companies and Health Maintenance leaving relatives to assume primary caregiving
Organizations (HMOs). Shortened hospital stays responsibilities for years after the injury. Family
necessitate a greater in-hospital focus on physical members’ responsibilities typically include helping
and functional goals and fewer opportunities for survivors manage activities of daily living, appoint-
rehabilitation staff to address the full spectrum ments, finances and medications. Family members

Correspondence: Jennifer H. Marwitz, Department of Physical Medicine and Rehabilitation, Virginia Commonwealth University, Richmond, VA, USA.
Tel: 804-828-3704. Fax: 804-828-2378. E-mail: jhmarwit@vcu.edu
ISSN 0269–9052 print/ISSN 1362–301X online ß 2009 Informa Healthcare Ltd.
DOI: 10.1080/02699050902926291
536 J. S. Kreutzer et al.

also help arrange for socialization and recreational In summary, there is little doubt that brain injury
activities and often serve as survivors’ primary source has adverse long-term consequences for family
of emotional support. members and survivors. Unfortunately, recent
Despite rehabilitation staff members’ best efforts reviews of the literature conclude that there is a
to educate and prepare families, many report feeling dearth of scientifically rigorous empirical research on
overwhelmed and ill-equipped to provide for survi- family interventions [30]. This manuscript has three
vors’ complex and dynamic long-term needs [4–6]. main purposes. First, a detailed description of the
Recent research indicates a family’s ability to cope in Brain Injury Family Intervention (BIFI), a manua-
the face of stressors influences the quality of support lized treatment for survivors and caregivers, is
they can provide to the person with the injury and, provided. Secondly, information regarding care-
consequently, the extent of the survivor’s neurobe- givers’ well-being, needs, perceived obstacles to
havioural recovery [7, 8]. Earlier discharge also receiving services and family functioning before
leaves family members with little time to personally and after treatment is described. Thirdly, limitations
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recover from the emotional shock triggered by the of the present investigation, clinical implications and
initial injury. directions for future research are discussed.
The impact of brain injury on families has been
well documented. For example, a variety of research-
ers have reported high rates of psychological distress,
namely anxiety and depression among caregivers in Methods
the acute and post-acute phases of injury [9–17]. Participants
Many researchers have documented disruptions in
family functioning [18, 19] as manifested by less Of 79 families that initially enrolled in the BIFI,
effective coping, problem-solving and communica- 53 completed all sessions and assessments. Divorce,
tion [20, 21]. An extensive body of literature on separation, moving out of state, severe illness and
family needs indicates that family members rate the transportation difficulties were the reasons most
For personal use only.

needs for information and emotional support commonly cited by participants for discontinuation.
[22, 23], early intervention and advocacy [24] and Families that did not complete the programme were
community reintegration [25] as very important. compared to those that did on variables including
However, many important needs are identified as caregiver relationship to patient, age, ethnicity,
unmet [23, 26]. Investigators have reported detri- gender, education and patient’s length of hospital
ments to life satisfaction when families hold percep- stay and time post-injury. No differences were
tions that services are unavailable, unaffordable and found, with the one exception of caregiver age.
inaccessible [27]. Younger caregivers were less likely to complete the
In summary, research has indicated that TBI has programme. The final sample included 53 persons
long-term adverse consequences for family mem- with acquired brain injury (ABI) and their family
bers, especially primary caregivers. Many agree that members. The only two exclusion criteria were
family members are adversely affected by brain active psychosis or suicidal intent and no partici-
injury and are likely to benefit from treatment pants were excluded.
[28, 29]. However, few investigators have developed With a mean age of 40.73 (SD ¼ 16.52), persons
evidence-based interventions for survivors and their with ABI were primarily male (58%), Caucasian
family members, leaving important unanswered (83%) and married (57%). With regard to cause of
questions. A comparative review of family interven- injury, the majority had sustained a traumatic brain
tion studies (see Table I) indicates both differences injury (87%). Among persons with TBI, the per-
and similarities. In every case, intervention included centage with mild (admission GCS 13–15), moder-
family members, but in most cases survivors were ate (GCS 9–12) and severe (GCS 3–8) injury was
not included. Treatment delivery methods varied 47%, 13% and 40%, respectively. Motor vehicle
greatly, with some focused on groups of family accidents were the primary cause of injury (52%),
members, others using individual counselling with a smaller number injured by motorcycle or
sessions in-person or by telephone and some pro- bicycle accidents (10%), falls (14%) and blunt
viding informational websites. Many interventions objects (11%). The remaining participants (13%)
provided combinations of education and psycholog- included individuals with aneurysm, brain abscess,
ical support while others focused on skills such stroke, encephalitis, epilepsy or hypoxia. Additional
as behaviour management and problem-solving. information regarding injury characteristics is pro-
Investigators’ findings were often equivocal, with vided in Table II. Data was collected on ancillary
some providing evidence of reduced psychological services received at the time of intervention and a
distress and improved problem-solving skills follow- majority of patients were receiving none.
ing intervention. Psychological, psychiatric and vocational services
Family intervention after brain injury 537

Table I. Comparative review of family intervention research studies.

Intervention delivery Caregiver intervention


Reference n method Recipient Intervention purpose benefits

[68] 19 group; in-person; three 5- family members psychological support, No significant changes in
hour sessions over 3 education coping ability, self-
weekends; manualized esteem, or life-
satisfaction.
[64] 91 group; in-person, on site vs family members psychological support Improvements in psycho-
telephone; ten 1.5– logical distress for both
2.0 hour sessions over 10 treatment groups but no
weeks; not manualized improvements in family
functioning or burden
for either.
[65] 33 individual; off site; two family members psychological support, No improvements in psy-
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follow-up telephone education via informa- chological distress.


calls over 5 weeks; not tion booklet
manualized
[63] 56 individual; on site in person family members psychological support, Intervention reduced
and off site, post-dis- education burden levels, improved
charge by telephone; satisfaction with care-
sessions varied in length giving and increased
for a period up to 16 perceptions of caregiving
months; not manualized competency.
[66] 27 individual; in-person, home family members, behavioural management, No significant changes in
and community setting; survivors problem-solving skills perceived stress or
2 hour education ses- training psychological distress.
sions provided weekly
over 4 weeks to all par-
For personal use only.

ticipants; behavioural
intervention group com-
pleted additional 2 hour
sessions weekly for 8
weeks; not manualized
[67] 41 survivor and family family members, education No significant changes in
member groups, in- survivors psychological distress,
person; eight, 2.5-hour coping or self-esteem.
sessions over 8 weeks;
not manualized
Rivera (2008) [61] 67 individual; 12 monthly ses- family members problem-solving skills Positive treatment impact
sions over 1 year, four training on psychological dis-
in-home, eight by tele- tress/depression, health,
phone; not manualized dysfunctional problem-
solving styles. No impact
on caregiver life satis-
faction, burden or con-
structive problem-
solving styles.
Present study 53 individual; on-site; five 1.5– family members, psychological support, Increases in met family
2 hour sessions delivered survivors education, skills training needs and perceived
over 10 weeks; access to services. No
manualized impact on psychological
distress, family func-
tioning, satisfaction with
life.

were most often reported, with fewer than 20% majority of care. Ranging in age from 22–72, with a
receiving such services. mean of 50.22 years (SD ¼ 12.52), the majority of
Family members included persons described by participating family members were spouses and
survivors as a family relation, a partner, a significant female. Other participants included siblings and
other or friend. When more than one family mem- adult children. Table III provides detailed informa-
ber was available, data was obtained from the one tion regarding educational level, employment status
person identified by the patient as providing the and marital status.
538 J. S. Kreutzer et al.

Table II. Injury characteristics (n ¼ 53). Table III. Caregiver information at intake.

Mean Median SD Range n ¼ 53 Percentage

Acute care length 14.4 7 18.28 0–80 Relation to survivor


of stay (days) Spouse 29 55%
Rehabilitation length 27.8 18 26.23 0–121 Parent 15 28%
of stay (days) Sibling 3 5%
Months post-injury 38.6 12.8 50.79 1.6–185 Adult child 2 4%
Length of unconsciousness 3.5 0.0 9.51 0–47 Boyfriend/girlfriend 2 4%
(days)* Other relative 2 4%
Admission Glasgow 10.4 12 4.72 3–15 Female gender 35 66%
Coma Scale* Married 44 83%
Education level
*For participants with TBI. Less than high school 3 6%
High school graduate/some college 28 52%
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College degree or greater 22 42%


Intervention structure and content Employment status
Competitively employed 35 66%
The Brain Injury Family Intervention (BIFI) is a Not competitively employed 18 34%
structured treatment designed to meet the needs
most commonly identified by family members and
survivors. The intervention was conceived to
improve survivors’ and family members’ psycholog-
and the family as a whole. The impact of brain injury
ical well-being, life satisfaction, access to services
on patients has been well documented. Researchers
and enhance family functioning [31]. The BIFI is
have also identified a profound impact on family
implemented over the course of five 90–120 minute members, especially primary caregivers [36, 37]. As
sessions. During each session, two or three topics are such, the BIFI is delivered jointly to family members
For personal use only.

addressed, as delineated in Table IV. The 11 topics and survivors. To strengthen family systems, the
are covered in the same sequence with each family. BIFI relies heavily on family therapy techniques
The BIFI was constructed such that sessions were including empathic reflections, validation, reframing
logically organized to achieve the greatest therapeu- and normalization of common concerns.
tic impact. Earlier sessions focus on the needs and Cognitive Behavioural Theory (CBT [38]) is
concerns most frequently identified during inter- predicated on the idea that a person’s cognitions
views conducted with family members and within influence his or her emotions and behavior [39].
the literature. Later sessions reinforce and build Change in one area is thought to produce related
upon the foundation of knowledge and skills learned changes in the other areas of functioning. Recent
in earlier sessions. Each session begins with an research studies have substantiated the benefits of
overview of topics and concludes with a summary CBT after brain injury [40–43]. As such, CBT
and homework assignments. techniques have been adapted and incorporated in
Clinicians depend on the BIFI manual [32] to the BIFI to improve cognitive, emotional and
deliver the intervention systematically and effi- behavioural functioning. Educational techniques
ciently. For each topic covered in each session, the are used to inform participants about common
manual delineates goals, materials needed and, if injury sequelae and recovery. Psychological support
necessary, accommodations for disability. Using a techniques are used to help participants recognize
step-by-step approach, the manual provides the their feelings and improve their emotional well-
clinician with detailed scripts for each module, being. Skills training techniques are used to improve
instructions, therapeutic activities and homework. problem-solving, communication and emotional
Bibliotherapy also serves as a helpful complement. control.
Fact sheets, guides and supplementary readings from The BIFI also makes significant use of the
the book Getting Better and Better after Brain Injury: technique, collaborative self-examination, developed
A Guide for Family, Friends, and Caregivers [33] were by Kreutzer and Taylor [32]. Injury typically causes
provided and reviewed by participants during treat- rapid and dramatic changes in the lives of survivors
ment sessions and for homework. and family members. Family members are often
The BIFI incorporates principles of family systems uncertain about their feelings, capabilities, concerns
theory (FST [34, 35]) and utilizes family therapy and plans for the future. Survivors often harbour
techniques. A primary postulate of FST is that similar uncertainties which are compounded by
families are interconnected systems. The actions, impaired self-awareness. Using collaborative self-
communications and feelings of each family member examination, each family member shares their
typically influence those of other family members perspectives about events, one another’s behaviour
Family intervention after brain injury 539

Table IV. Overview of BIFI sessions and topics.

Session Topic Objective(s)

I. Effects of brain injury on the What is normal after brain injury? Recognize, understand and appreciate
survivor and family common injury consequences; recognize
each family member’s point of view about
the injury’s effects
Brain injury happens to the whole family Improve communication and recognition
that each family members’ responsibil-
ities, life plans and feelings about the
future have been significantly changed
II. Understanding recovery Emotional and physical recovery are two Appreciate expectations for improvement
different things and clearly understand the differences
between emotional and physiological
recovery
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Mastering the art of patience Appreciate the benefits of patience and


master the skill of overcoming impatience
Coping with loss and change Identify and implement strategies to better
cope with loss and change
III. Solving problems and setting Setting reasonable goals Understand the characteristics and dangers
goals of unrealistic goals and take steps to set
more reasonable and achievable goals
Solving problems effectively Identify obstacles to solving problems effec-
tively; learn and apply a framework of
strategies for efficient problem-solving
IV. Managing stress and intense Managing stress effectively Identify current stress levels and recognize
emotions personal ‘red flags’ which signal stress;
employ strategies for managing stress
effectively
For personal use only.

Managing intense emotions Recognize communication obstacles and the


importance of communication; employ
strategies to effectively manage frustra-
tion, anger and other intense emotions
V. Strategies for optimal recovery Taking care of yourself Recognize the adequacy and importance
of self-care; take steps to better care for
one’s self
Focusing on gains and accomplishments Realize the strong relationship between
thoughts and feelings; better recognize
strengths and progress
Most important lessons learned and where to Recognize and communicate the most
go from here important things learned during the
course of intervention

and their interactions with one another, encouraging Family members are also assisted in recognizing
perspective taking, self-monitoring and enhanced and making greater use of approaches that work well
awareness. Collaborative self-examination chal- and make their lives better.
lenges family members’ perceptions of themselves All clinicians conducting the BIFI treatment were
and provides an opportunity for each person to doctoral level psychologists who received training
understand how others perceive them. When imple- from the first author. Initially, clinicians carefully
menting the technique, family members are asked to studied the treatment manual and observed the
answer standardized questions to illuminate infor- first author providing a course of sessions. Next,
mation about their perspective. Then, family mem- therapists were observed and given feedback.
bers are asked to communicate their perspective Clinicians met weekly for supervision with the first
while others listen. All family members are reminded author. At the end of each session, participants
that they do not have to agree. The discussion is completed feedback forms indicating their percep-
meant to facilitate understanding, encourage discus- tion of the extent to which session goals were
sion, improve family members’ communication skills achieved and their overall satisfaction with the ses-
and enhance support for one another. Through the sion and the material presented. Completed
use of collaborative self-examination, family mem- forms indicated a high level of satisfaction and
bers are encouraged to recognize and stop using that the goals delineated in the manual were
approaches that do not work or make things worse. consistently achieved.
540 J. S. Kreutzer et al.

Measures injury [7, 54–56]. The present investigation only


utilized items from the 12-item General
. Family Needs Questionnaire (FNQ): The FNQ is
Functioning Scale, developed to characterize
a widely used 40-item self-report questionnaire
overall family functioning. Items are rated on a
developed to measure family members’ perceived
scale ranging from 1–4, indicating ‘strongly agree’
needs after a family member sustains a brain
to ‘strongly disagree’. Some items are reverse-
injury [44–48]. The items were designed to
coded, with lower scores indicative of more
address diverse psychosocial and educational
optimal functioning.
needs apparent in the acute and post-acute
. Brief Symptom Inventory-18 (BSI-18): The BSI-18
phases after injury. Family members rate the
[57] is an 18 item self-report instrument designed
extent to which needs are perceived as important
to quantify psychological distress in the general
on a scale ranging from 1 ¼ not important to population. Increasingly, the measure has been
4 ¼ very important. Respondents also rate the used to quantify family members’ distress after
degree to which they perceive that each need has
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brain injury [58, 59]. The instrument is a


been met (not met, partly met or met). Content psychometrically sound [60], abbreviated version
and construct validity as well as internal consis- of the SCL-90-R [57]. Frequency ratings for
tency has been established (Spearman-Brown items in three primary symptom dimensions are
split-half reliability of 0.75) [22]. A later factor added to yield scores for Somatization,
analytic investigation [49] revealed six indepen- Depression and Anxiety. The Global Severity
dent factors comprising six scales: Health Index (GSI) reflects the sum of scores for the
Information, Emotional Support, Instrumental three primary symptom dimensions. T-scores for
Support, Professional Support, Community each dimension and the GSI are calculated based
Support Network and Involvement with Care. on community norms.
Internal consistency for individual factors was . Satisfaction With Life Scale (SWLS): The SWLS
indicated by Chronbach’s alpha’s ranging from [43] is a measure of global life satisfaction
For personal use only.

0.78–0.89. The proportion of needs described as comprised of five statements scored on a Likert
met (converted to a 10-point scale) was the scale such that 1 ¼ Strongly disagree and
primary family outcome measure for the present 7 ¼ Strongly agree. The measure has been used
study. by a number of researchers to characterize
. Service Obstacles Scale (SOS): The SOS [50] was caregivers post-injury [58, 61]. Lower scores
developed to evaluate individuals’ and caregivers’ indicate lower levels of life satisfaction.
perceptions of brain injury services in the com- Normative data are available and the scale shows
munity with regard to quality and accessibility. good convergent validity with other scales
The six-item scale solicits information regarding and with other types of assessments of subjective
obstacles to receiving brain injury services, knowl- well-being [62]. The SWLS has shown sufficient
edge of and availability of resources and satisfac- sensitivity to detect changes as a result of clini-
tion with the quality of care. Items are rated on cal interventions and has good discriminant
a seven-point Likert-type scale ranging from validity [62].
1 ¼ strongly disagree through 7 ¼ strongly agree.
Lower scores denote greater access and satisfac-
tion with services. The SOS has three main Procedure
components: (1) satisfaction with treatment Participants were recruited from a variety of sources
resources; (2) finances as an obstacle to receiving and included persons with neurobehavioural pro-
services; and (3) transportation as an obstacle to blems referred by rehabilitation providers, advocacy
receiving services. A recent regional needs assess- organizations and agencies. Screening, assessment
ment study provided evidence of the SOS’s and intervention were centralized in an outpatient
validity [51]. The total score for items relating rehabilitation clinic attached to a major medical
to satisfaction with treatment resources served as centre. During the initial intake session, project staff
a primary outcome measure in the present provided information about the research pro-
investigation. gramme, confirmed eligibility and interest in parti-
. Family Assessment Device (FAD): The FAD is a cipation, identified the primary family member and
60-item questionnaire designed to assess diverse obtained informed consent from all participants
aspects of family functioning [52, 53]. A number in each family.
of investigators have used the measure to charac- On giving informed consent, the individual with
terize families after brain injury. For example, TBI and primary family member were given baseline
a number of researchers have also utilized the assessment materials to complete. One therapist
FAD to assess family functioning after brain worked with each family through completion of the
Family intervention after brain injury 541

intervention. The five 90–120 minute sessions were p < 0.2. Interactions between evaluation interval,
scheduled over a 10-week period. Participants were scales and each covariate were considered to deter-
asked to review and discuss materials and complete mine if the changes over time varied in relation to
worksheets between sessions. Post-treatment data demographic and injury characteristics. Insignificant
was collected following completion of the fifth covariates and interaction effects were subsequently
session. Three month follow-up data was collected removed if p  0.05. To control the type I error rate,
10–14 weeks following the last session. Bonferroni adjustments for multiple comparisons
were utilized.
Data analysis An alternative to MANOVA, mixed-effects
models have the advantage of accounting for
Descriptive statistics including means, standard correlated data by assuming specific variance–covar-
deviations and proportions were computed for iance structures. The mixed-effects model also has
variables relating to injury and caregiver character- the advantage of simultaneously modelling, within
istics. Means and standard errors were calculated for
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each subject, correlations in measures across time as


the five outcome measures. Repeated measures
well as across scales. Participants with missing data
mixed models were used to model the means of
can be examined and need not be excluded from
each outcome measure over time. For all models, an
analysis. Furthermore, modelling more data together
autoregressive variance–covariance structure was
increases statistical power and decreases standard
chosen to model the correlations in observations
errors of estimates.
over time within subjects. Models for measures with
multiple scales (e.g. BSI, FNQ) also utilized an
unstructured variance–covariance structure to
account for the correlation between scales. Results
The initial models for each outcome measure were
Family needs
examined to determine if there were changes in
For personal use only.

scores over time without adjusting for covariates. Means and standard errors for the six FNQ scales
When there was evidence of at least a marginal are detailed in Table V. A single repeated measures
amount of change in scores (p-value < 0.20), an mixed model was used to model the six FNQ scales
adjusted model was fit to more accurately model the over time, assuming an autoregressive structure
means. The variables considered for adjustment across the visits and an unstructured structure
included caregiver characteristics such as relation across the domains. Changes in the FNQ over time
to survivor (spouse, parent, other), age, gender, were not significantly different across the six scales
ethnicity (minority, non-minority) and marital status (p ¼ 0.4913). Regardless of scale, scores changed
(married/cohabitating, not married) and survivor significantly over time (F(2, 81) ¼ 8.97, p ¼ 0.0003).
characteristics including age and acute care length Using a Bonferroni correction ( ¼ 0.0083) for post-
of stay. The adjusted models were initially fit in a hoc comparisons, significant increases in met needs
forward stepwise fashion, entering covariates with over time were evident for Health Information

Table V. Means and standard errors for outcome measures before and after treatment.

Pre-treatment Post-treatment 3 Month follow-up


Measure Mean (SE) Mean (SE) Mean (SE)

Family Needs Questionnaire*


Health Information 5.25 (0.43) 7.09 (0.44) 7.63 (0.50)
Emotional Support 3.72 (0.47) 5.31 (0.47) 5.32 (0.54)
Instrumental Support 3.40 (0.51) 4.75 (0.51) 4.90 (0.59)
Professional Support 3.55 (0.51) 5.72 (0.52) 6.25 (0.59)
Community Support 3.75 (0.49) 4.80 (0.49) 5.81 (0.56)
Care Involvement 5.09 (0.58) 6.58 (0.58) 7.64 (0.67)
Family Assessment Device 23.71 (0.85) 23.83 (0.87) 23.59 (0.95)
Service Obstacles Scale 14.60 (0.73) 12.26 (0.77) 10.30 (0.87)
Brief Symptom Inventory-18
Somatic 51.82 (1.40) 51.71 (1.44) 51.69 (1.62)
Depression 54.19 (1.35) 51.10 (1.38) 53.40 (1.56)
Anxiety 54.61 (1.32) 52.15 (1.35) 53.24 (1.52)
Global Severity Index 54.65 (1.37) 52.14 (1.41) 53.48 (1.59)
Satisfaction with Life Scale 21.45 (1.06) 22.29 (1.06) 21.45 (1.13)

*FNQ scale score values were transformed to a 10-point scale.


542 J. S. Kreutzer et al.

(p ¼ 0.0002), Professional Support (p ¼ 0.0002) and analysis did not provide evidence of differences
Care Involvement (p ¼ 0.0083) needs, but not for between post-treatment and 3 month follow-up
Emotional Support (p ¼ 0.0104), Instrumental scores.
Support (p ¼ 0.0506) or Community Support Regarding caregiver marital status, FNQ scores
(p ¼ 0.0147). were significantly higher for married caregivers than
Subsequently, an adjusted model was fit that non-married caregivers by 2.253 units (95%
included main effects for time (F(2, 78) ¼ 9.05, CI ¼ 0.950, 3.556), irrespective of scale or evalua-
p ¼ 0.0003), FNQ scale (F(5, 240) ¼ 12.71, tion interval (i.e. pre-treatment, immediate post-
p < 0.0001), caregiver marital status (F(1, 46) ¼ treatment, 3 months follow-up). Additionally, a
12.11, p ¼ 0.0011) and acute LOS (F(1, 46 ¼ 7.52, 10-day increase in acute LOS was associated with
p ¼ 0.0087), as well as an interaction effect for time a 0.38 unit decrease (95% CI ¼ 0.10, 0.66) in FNQ
by domain (F(10, 379) ¼ 1.06, p ¼ 0.3941). After score, irrespective of scale or evaluation interval.
adjusting for caregiver marital status and acute LOS, There was no evidence of interaction effects for
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the FNQ changes over time were not significantly FNQ scale, evaluation interval and the covariates
different among the six scales. All six FNQ scales (e.g. marital status, acute care LOS).
showed significant changes over time.
Using a Bonferroni correction ( ¼ 0.0083) for Family functioning
post-hoc comparisons, changes over time were
A single repeated measures mixed effects model was
significant for the Health Information (p ¼ 0.0002),
used to model the FAD scores over time, assuming
Emotional Support (p ¼ 0.0069), Professional
an autoregressive structure across the visits. Scores
Support (p ¼ 0.0002) and Care Involvement
did not change significantly over time (F(2, 80) ¼
(p ¼ 0.0083) scales. Significant changes were not
0.05, p ¼ 0.9486). Means and standard errors are
observed for the Instrumental Support (p ¼ 0.1336)
presented in Table V. Since there was not evidence
or Community Support (p ¼ 0.0171) scales.
of changes in family functioning over time
For personal use only.

For the Health Information, Emotional Support,


(p ¼ 0.9486 > 0.20), an adjusted model was not fit.
Professional Support and Care Involvement scales,
changes over time were further examined using a
Bonferroni correction ( ¼ 0.0167). As indicated in Service obstacles
Table VI, significant pre- to post-treatment increases A single repeated measures mixed effects model was
were identified for Health Information, Emotional used to model the total SOS scores over time,
Support and Professional Support needs, but not for assuming an autoregressive structure across the
Care Involvement. Comparisons between pre-treat- visits. Scores changed significantly over time (F(2,
ment and 3 month follow-up data revealed signifi- 78) ¼ 8.58, p ¼ 0.0004). Mean values and standard
cant increases for the four scales. The data presented errors are presented in Table V. Using a Bonferroni
in Figure 1 provides evidence that treatment benefits correction ( ¼ 0.0167) for post-hoc comparisons,
may continue to accrue for several months beyond significant pre- to post-treatment (p ¼ 0.0062) and
completion of formal intervention. However, pre-treatment to 3 month follow-up (p ¼ 0.0001)

Table VI. Adjusted FNQ score increases: mean, standard error, 95% confidence intervals and associated p-values.

Mean increase SE 95% CI p-value

Health information
Pre–post-treatment 1.743 0.490 (0.842, 2.878) 0.0004
Post–3 month follow-up 0.523 0.535 (0.568, 1.698) 0.3286
Pre–3 month follow-up 2.267 0.596 (1.184, 3.665) 0.0002
Emotional support
Pre–post-treatment 1.611 0.543 (0.585, 2.612) 0.0032
Post–3 month follow-up 0.063 0.592 (1.078, 1.175) 0.9156
Pre–3 month follow-up 1.674 0.660 (0.414, 2.881) 0.0116
Professional support
Pre–post-treatment 2.106 0.591 (1.006, 3.327) 0.0004
Post–3 month follow-up 0.562 0.645 (0.769, 1.816) 0.3844
Pre–3 month follow-up 2.668 0.717 (1.279, 4.101) 0.0002
Care involvement
Pre–post-treatment 1.431 0.675 (0.157, 2.842) 0.0346
Post–3 month follow-up 1.087 0.736 (0.436, 2.550) 0.1403
Pre–3 month follow-up 2.519 0.823 (0.918, 4.195) 0.0024
Family intervention after brain injury 543

3
mixed model was used to model the four BSI-18
Pre-Post Post-3 Months
scales over time, assuming an autoregressive struc-
2.5
ture across evaluation intervals and an unstructured
structure across the scales. Analysis indicated
Mean Increase

2
that BSI-18 scale scores did not change significantly
1.5 over time, (F(2, 81) ¼ 1.49, p ¼ 0.2318) and there
were no significant differences between scales
1
(F(6, 243) ¼ 1.25, p ¼ 0.2792). Since there was not
0.5
evidence that the BSI changed significantly over time
(p ¼ 0.2318 > 0.20), an adjusted model was not fit.
0 A single repeated measures mixed model was used
Health Emotional Instrumental Professional Community Care
Information Support Support Support Support Involvement to model the caregiver SWLS scores over time,
assuming an autoregressive structure across the
Figure 1. Mean post-treatment changes in met needs.
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visits. Caregiver SWLS scores did not change


significantly over time (F(2, 82) ¼ 1.33,
p ¼ 0.2694). Means and standard errors are provided
Table VII. Adjusted SOS score decreases by acute care length of in Table V.
stay: mean, standard error, 95% confidence intervals and
associated p-values.
Discussion
Mean
decrease SE 95% CI p-value** Family intervention researchers have examined dif-
ferent types of outcomes, yet most studies have not
1 day acute care* yielded evidence of treatment benefits. Investigations
Pre–post-treatment 4.02 1.04 (1.95, 6.09) 0.0002
of benefits to psychological distress, problem-solving
Post–3 month follow-up 1.36 1.16 (0.96, 3.68) 0.2455
and burden have generated equivocal findings
For personal use only.

Pre–3 month follow-up 5.38 1.32 (2.76, 8.03) 0.0001


19 days acute care* [61, 63–67]. No investigators have identified signif-
Pre–post-treatment 1.87 0.86 (0.16, 3.59) 0.0325 icant improvements in post-intervention family
Post–3 month follow-up 1.91 0.95 (0.01, 3.81) 0.0487 functioning, life satisfaction, coping or self-esteem
Pre–3 month follow-up 3.78 1.08 (1.63, 5.93) 0.0008
[61, 64, 67, 68]. On a positive note, family
*1 and 19 day length of stay values correspond to 1st and 3rd participants in the present investigation showed a
quartiles. greater number of met family needs and perceived
**post hoc comparisons are made in reference to a Bonferroni
correction ( ¼ 0.0083). fewer obstacles to obtaining services following the
BIFI. Post-hoc analyses suggested that treatment
benefits continued to accrue for at least 3 months
decreases were identified. The post-treatment to beyond the cessation of treatment. These findings
3 month follow-up (p ¼ 0.0428) decrease was are unique in that other researchers have not
nominal. examined how intervention affects family needs or
With evidence of significant SOS changes over perceptions of access to services.
time, an adjusted model was built to account for The present investigation was also unique in using
caregiver and survivor characteristics. The model covariance analyses to identify factors that influ-
included main effects for time (F(2, 74) ¼ 10.26, enced treatment. There was no indication that
p ¼ 0.0001), acute LOS (F(1, 74) ¼ 1.87, caregivers’ relationship to survivor, gender, age or
p ¼ 0.1779) and the interaction effect (F(2, ethnicity related to treatment. Nor was there evi-
74) ¼ 3.55, p ¼ 0.0338). Table VII provides infor- dence that survivors’ age influenced treatment out-
mation regarding the interaction between evaluation come. On the other hand, caregivers’ marital status
interval and acute LOS. Comparisons are made at and survivors’ length of hospitalization were identi-
first (i.e. 1 day) and third (i.e. 19 days) quartile fied as significant covariates. With regard to marital
LOS values. In comparison to family members of status, married caregivers reported more met needs
participants with longer lengths of stay, family than unmarried caregivers. The higher rate of met
members of participants with shorter stays showed needs was evident before and after treatment.
greater improvements pre- to post-intervention and With regard to length of stay, caregivers of survivors
pre-intervention to 3 month follow-up. with longer hospitalizations reported fewer met
needs. Researchers have only begun to examine the
impact of brain injury on marriages and factors that
Family members’ distress and life satisfaction
influence marital stability. Findings from the
Means and standard errors for BSI-18 scales are present investigation suggest that marriage provides
provided in Table V. A single repeated measures important supports for caregivers. With regard to
544 J. S. Kreutzer et al.

perceived obstacles to receiving services, survivors’ methodologies vary widely. Some have provided
acute care length of stay was the only significant treatment to groups while others have provided
covariate. Families of survivors with longer hospital- individual treatment. In some cases treatment has
ization lengths reported more obstacles to receiving been delivered by telephone and in other cases in
services. The findings for marital status and service person. Standardization of treatment has been
accessibility are not surprising and they fit with the difficult, with most providers not relying on a
notion that adjustment is more difficult for unmar- treatment manual. Treatment has been provided in
ried persons and caregivers of survivors with more hospitals, homes, clinics and other community-based
severe injury. Clearly these findings should be settings. Some interventions have included survivors,
viewed as preliminary and more research is needed though most have not. There has been great vari-
to delineate factors influencing treatment success. ability in the frequency and duration of treatment,
The present investigation also examined post- with some investigators delivering treatment for less
treatment changes in psychological distress, family than 1 month and others for over 1 year. Finally,
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functioning and life satisfaction. Among the seven interventions have been developed for varying
previous family intervention studies reviewed, only purposes. Most investigators have included a psy-
Brown et al. [64] examined impact on family chological support component and an educational
functioning. As in the present investigation, Brown component. A relatively small number have focused
et al. utilized the Family Assessment Device and on skill building. The present investigation is the first
significant treatment effects were not observed. to incorporate all three components, education,
Acorn [68] used the Life Satisfaction Index [69] psychological support and skill building.
and Rivera [61] used the Satisfaction with Life Scale Investigations have also utilized widely varying
(SWLS [43]) to measure caregivers’ satisfaction with outcome measures, even when measuring the same
life. As in Rivera’s investigation, the present inves- construct. Variation in measures utilized to quantify
tigation also utilized the SWLS. Non-significant psychological distress and coping are most impress-
findings were reported in all three investigations. ive. For example, two investigators examined care-
For personal use only.

A majority of family intervention studies have givers’ coping [67, 68] and each relied on a different
included a psychological support component and measure. The Satisfaction With Life Scale, Family
findings have been equivocal. Brown et al. [64] and Assessment Device, HADS and the Rosenberg Self-
Rivera et al. [61] identified treatment-related psy- Esteem Scale were each used in two research studies.
chological distress reductions. Brown et al. relied Unfortunately, no measures have been used in more
upon the Profile of Mood States [70] and Rivera than two studies.
et al.’s participants completed the CES-D [71]. The findings of the present investigation must be
As reported by Morris [65], Carnevale et al. [66] and interpreted within the context of several method-
Sinnakaruppan et al. [67], the present investigation ological limitations. First, a control group was not
did not identify treatment-related reductions in utilized, leaving questions about factors underlying
distress. Morris and Sinnakaruppan et al. both treatment benefits. Self-report measures were uti-
utilized the HADS to measure distress. Differential lized and outcome data was not derived from
findings regarding psychological distress seem unre- standardized observational methods or interviews.
lated to intervention delivery method, recipient or Some might suggest that a combination of observa-
purpose. Instead, differential findings may be attrib- tional and self-report measures is optimal. The
utable to the differential sensitivity of outcome sample was relatively small, raising questions about
measures. Equivocal findings may also indicate that statistical power and representativeness. Data was
smaller samples did not provide sufficient statistical collected at a single centre, perhaps adding to
power. The samples used by Brown et al. (n ¼ 91) questions about generalization from findings.
and Rivera et al. (n ¼ 67) were larger than those in all Treatment spanned five sessions over a 10-week
the other investigations. period, leaving uncertainties about optimal treat-
In fact, sample size may be one of the salient ment intensity, duration and frequency. The data
factors distinguishing studies that have shown provided support for the durability of treatment
treatment-related benefits from those that have not. effects, but there are questions about durability
The four studies [65–68] with the smallest sample beyond 3 month follow-up.
sizes showed no treatment benefit. Sample sizes Without a doubt additional research is needed.
ranged from 19–41. Including the present investiga- Ideally, future studies should include a combination
tion, the four studies with greater than 50 partici- of well-validated measures, especially tools
pants provided evidence of treatment-related developed for brain injury populations and shown
benefits [61, 63, 64]. to be treatment sensitive. Inclusion of a control group
Unfortunately, comparing the benefits of different will enable researchers to draw firmer conclusions
interventions has been difficult because about factors underlying treatment benefits. Wait-list
Family intervention after brain injury 545

controls may be preferred to no-treatment controls 2. Harrison-Felix C, Newton CN, Hall KM, Kreutzer JS.
because of ethical concerns about withholding treat- Descriptive findings from the Traumatic Brain Injury Model
Systems National Database. Journal of Head Trauma
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likelihood of Type II error. Comparing treatments report: evidence for the effectiveness of rehabilitation for
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longer-term follow-up will help ascertain the ideal Rehabilitation 1999;14:176–188.
4. Gillen R, Tennen H, Affleck G, Steinpreis R. Distress,
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Acknowledgement injured individuals and their primary, secondary, and tertiary
carers. Journal of Head Trauma Rehabilitation 2000;15:
Supported by grants H133A070036 and
909–929.
H133P040006 from the National Institute on 17. Riley GA. Stress and depression in family carers
Disability and Rehabilitation Research, United following traumatic brain injury: the influence of beliefs
States Department of Education. about difficult behaviours. Clinical Rehabilitation 2007;21:
82–88.
Declaration of interest: The authors report 18. Kreutzer JS, Gervasio AH, Camplair PS. Patient correlates of
no conflicts of interest. The authors alone are caregivers’ distress and family functioning after traumatic
responsible for the content and writing of the paper. brain injury. Brain Injury 1994;8:211–230.
19. Groom KN, Shaw TG, O’Connor ME, Howard NI,
Pickens A. Neurobehavioral symptoms and family function-
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