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. Author manuscript; available in PMC: 2010 Jun 1.
Published in final edited form as: J Neurosci Nurs. 2009 Jun;41(3):148–158. doi: 10.1097/jnn.0b013e3181a23eda

A Critical Analysis of Measures of Caregiver and Family Functioning following Traumatic Brain Injury

Hilaire J Thompson
PMCID: PMC2718761  NIHMSID: NIHMS122293  PMID: 19517765

Abstract

More than 5.3 Million Americans are living with long-term disability following TBI and approximately 40% of TBI survivors report at least one unmet need at 1 year post-injury. The totality of the problem of TBI may therefore put increased responsibilities on the significant other and family. The purpose of this work was to conduct an integrative review of the literature to identify available instruments that might be useful to researchers and clinicians interested in the effects of TBI on family functioning. A review of the literature was undertaken using CINAHL Plus, Family Systems Abstracts, and Pubmed from 1998–2008. 35 articles were identified the initial search and 8 were excluded leaving 27 articles for full review and analysis. Conceptual and methodological issues identified across the studies resulted in an inability to recommend any of the instruments used in the present studies for use without further study. These issues identified included: a lack of conceptual framework for construct validity, variability in injury characteristics, issues with sampling methodology, a lack of longitudinal designs, comparison group issues and an inability to compare instruments across studies.

Introduction

More than 1.4 Million people sustain a traumatic brain injury (TBI) in the US each year and more than 5.3 Million Americans are living with long-term disability following TBI (Injury Fact Book, 2002). Traumatic brain injury may result in persistent cognitive and communication problems that vary depending on the location and severity of the injury. Symptoms commonly include: difficulty concentrating, impaired judgment, impaired memory, problems with decision making and problem solving, word-finding difficulties and inappropriate social behavior. Approximately 40% of TBI survivors report at least one unmet service need at 1 year post injury (Heinemann, Sokol, Garvin, & Bode, 2002). In order to attempt to meet unmet needs following injury in TBI patients, increased responsibilities may be placed on the significant other/family than prior to injury.

Head trauma can affect anyone at any age but older adults are particularly vulnerable to injuries from falls and traffic accidents. In persons 65 years of age and older, traumatic brain injury (TBI) is responsible for over 80,000 emergency department visits each year and adults age 75 years or older have the highest rates of TBI-related hospitalization, thus they are a large and growing population within the TBI community (Langlois, Rutland-Brown, & Thomas, 2004; Department of Health and Human Services., 2000).

When one partner in an intimate relationship experiences a sudden injury resulting in temporary or permanent disability, such as a TBI, the relationship is stressed by the events. In some cases; however, these stressors strain the couple’s relationship to the breaking point, and may result in higher rates of separation and divorce among TBI survivors (Wood & Yurdakul, 1997). Research to date has primarily focused on younger and middle aged adults and little is known about older adults following TBI. A single qualitative study was identified from the literature about the experience of using the multiple case study approach Layman and colleagues (2005) focused on the experience of older partners of persons with TBI. The authors identified Relatedness and Relationship Persistence as the two primary themes of interest and noted that there was an inability of couples to discern normal aging changes versus TBI-related changes (Layman, Dijkers, & Ashman, 2005).

Thus, given the paucity of available research for caregivers/family member functioning of older adult TBI survivors, it is clearly an area warranting further attention. Well-validated instruments of caregiver role functioning are available from the geriatric literatures and include the Kingston Caregiver Stress Scale (Hopkins, Killik, & Day, 2007) the Modified Caregiver Strain Index (Thornton & Travis, 2003) the Zarit Caregiver Burden Scale (Zarit, Reever, & Bach-Peterson, 1980). However, these were originally developed for use in caregivers of persons with dementia, not TBI. As to date there is only a single article available specific to older adults TBI survivors and family functioning, a review of the literature was consequently undertaken to identify available instruments used to assess caregiver/family member functioning of TBI survivors of all ages.

Questions of Interest

Is there an optimal measure of family functioning identified from the TBI literature for use in future studies of TBI survivor family member/caregivers? Is this identified measure appropriate for use with older adult TBI survivor family member/caregivers?

Method

To answer the research questions of interest, a review of the literature was undertaken using the following databases: CINAHL Plus, Family Systems Abstracts, and Pubmed. The databases were searched from 1998–2008 using the MeSH terms: Brain Injuries; caregivers; questionnaires and the following restrictions: English; Research Articles; Full Text Available.

Results of Literature Review

From the initial search, 35 full-text articles were identified. Following a review of the article abstracts, 8 were excluded from the initial search because they were a) qualitative interviews and/or b) studies that used caregiver factors to predict of TBI survivor outcome and this was not the focus of research question. 27 articles remained for full review and analysis (See Table 1).

Table 1.

A Comparison of Studies of Caregiver and Family Functioning in Traumatic Brain Injury

Reference Unit of Analysis Conceptual
Framework
Study Design Sample Instrument(s) Used
to measure
Caregiver/Family
Function
Findings/Comments
(Anderson et al. 2002) Spouse/Partner of
TBI survivor
Hobfoll and
Spielberger’s
COR theory of
psychological
distress and
Epstein’s
McMaster
Model of Family
Functioning
Path Analysis N=74
Spouse/partners
of TBI
survivors (age
range of TBI
patient 27–75;
time since
injury 5–184
months)
Problem Checklist
of General Health
and History
Questionnaire;
Family Assessment
Device;
Global Severity
Index;
Brief Symptom
Inventory (BSI)
TBI survivor behavioral problems
were strongest predictor of
caregiver psychological distress.
Communication and
social problems have linear
relationship with symptoms of
psychological distress.
(Brown et al. 1999) Individual
caregivers
None Quasi-
experimental
pre/post-test
design; evaluate
effectiveness of
face-to-face vs.
phone caregiver
support groups
Caregivers
(family member
or s.o.) living
within 40km
(n=169) vs.
those living
>40km (n=146)
POMS; Caregiver
Burden Inventory;
McMaster Model
Family Assessment
Device
Similar results seen with both
methods. Rural phone support
group participants reported fewer
difficulties on most scales so may
be good option for this population.
(Carnevale et al. 2002) Dyad Stress-Appraisal-
Coping Model
RCT of
Educational
program and
education plus
behavior
management vs.
control
n=27 TBI
survivors and
their caregivers
(n=27)
Questionnaire on
Resources and
Stress for Families
with Chronically Ill
or Handicapped
Members;
Maslach Burnout
Inventory
Initial levels of caregivers’ burden
and distress were highly predictive
of those at 14 weeks (outcome).
Low sample size per group
Ergh et al. (2003) Dyad Well-being Cross-sectional
(range post-
injury 4 months
to 10 years)
N=120 (60 pairs
of TBI
survivors and
caregivers)
Neuropsychology
Behavior and
Affect Profile–
Significant Other
Form; Social
Provision Scale;
Satisfaction with
Living Scale
Social support found to be positive
mediator; however, TBI survivor
neurobehavioral issues were
associated with lower caregiver
life satisfaction regardless of
social support.
Gan & Schuller (2002) Family (also
reported BI vs.
family)
Family Systems
Framework
Cross sectional;
instrument
development
N=92 FAM-III Family defined as those living in
same household.
See Gan et al. (2006) as includes
this sample. Family perceived
greater differences in functioning
than BI person.
(Gan et al. 2006) Family System
(also reported
individual)
Family Systems
Framework
Cross sectional;
At time seeking
rehab services; instrument
validation
N=214 from
registry; 66 BI
persons and 148
family
members.
(Mean time
since injury 5.7
years; ages of
FM ranged 14–
55.)
FAM-III Family defined as those living in
same household.
Pooling effect seen when family
unit of analysis; however fathers
reported less stress when analyzed
individually. BI families
statistically different from
normative; but unclear if clinically
significant as still in “normal
range”.
(Godfrey et al. 2003) Individual
caregiver
None Cross sectional;
Instrument
validation
(factor analysis)
N=242
88 parents, 81
spouses, 11
siblings, 34
other relatives,
14 friends and
13 other
acquaintances
(e.g.
professional
caregivers)
Head Injury
Behavior Scale
2 factor solution Emotional and
Behavioral Regulation.
(Hanks et al., 2007) Individual
caregiver
Stress-Appraisal-
Coping Model
Cross-sectional
(6 months-15
years post-
injury)
N=60 primary
caregivers of
persons with
TBI
Caregiver Appraisal
Scale; Coping
Inventory for
Stressful Situations;
Family Assessment
Device; Social
Provisional Scale
Perception of social support is
highly related to perceived burden,
caregiving mastery and
satisfaction. Coping style was
related to caregiving satisfaction:
better among those who use task-
oriented coping and less emotion-
focused coping.
(Harris et al. 2001) Individual
caregivers
Stress-Appraisal-
Coping Model
Cross sectional
(between 6
months and 3
years following
injury)
N=58
Caregivers
identified by
persons with
TBI
(age of TBI
survivor ranged
15–64; 47%
parents; PTA
24h-10 weeks)
Social Behaviour
Assessment
Schedule;
Zung Depression
Scal
23% of caregivers were
experiencing clinically significant
levels of depression. Caregiver
reports of behavioral problems,
social role problems, and adverse
effects were correlated to
depression scores. Perceived
support was also predictive of
depression in this model.
(Katz et al. 2005) Wife Brooks and
Aughton’s
subjective vs.
objective
caregiver burden
Cross sectional N=40 wives of
persons with
TBI (range of
time since
injury 1–32
years)
Perceived Burden
Questionnaire;
Lester’s ways of
Coping
Questionnaire
Wives with low coping flexibility
were perceived to have higher
burden at earlier times after injury;
however ? if analysis done
correctly as df incorrect for
interaction term.
(Kolakowsky-Hayner et al. 2001) Individual
caregiver
None Cross sectional
at least 4 years
post injury
N=57 caregivers
of persons with
TBI (age range
19–82; 72%
lived with person; 35%
spent q day
with)
Virginia Traumatic
Brain Injury Family
Needs Assessment
Survey
Study demonstrated a decline in
family members’ quality of life
after injury relative to preinjury
(but 58% were at least somewhat
satisfied); percentage of needs
rated as unmet/partially met
ranged from 48% to 60%
(Man et al., 2002) Individual Family
Member
None Cross sectional;
instrument
development
Group 1: 221
mixed group of
family members
of persons with
TBI; Group 2:
65 rehab
professionals
Family
Empowerment
Questionnaire
Differences noted between rehab
professionals and Hong Kong
Chinese family members on 4
empowerment factors may have
clinical implications for care
provision.
(Marsh et al., 1998a) Individual
caregiver
None Cross-sectional
at 6-months
post-injury
N=69 primary
caregiver of
adult with TBI
Beck
Depression
Inventory; Trait
Anxiety Inventory;
Head Injury
Behavior Rating
Scale; Caregiving
Questionnaire
Anxiety, depression, and social
adjustment problems present in
1/3 of caregivers at 6 months.
Social isolation and negative
emotions of TBI survivor
associated with most distress
while behavioral problems have
most impact overall on caregiver
function at 6 months.
(Marsh et al., 1998b) Individual
caregiver
None Cross-sectional
at 1-year post
injury
N=69 primary
caregiver of
adult with TBI
See (Marsh 1998a)
for instruments
Number of behavioral problems
and physical impairment of the
TBI survivor as well as social
isolation were strongest predictors
of burden. Caregiver distress
resulted from TBI survivor
emotional difficulties such as
anger. Most impact was loss of
personal time on part of caregiver.
(Marsh et al., 2002) Individual
caregiver
None Longitudinal
(combined prior
data 6 mo/1 yr)
N=52 primary
caregiver of
adult with TBI
See (Marsh 1998a)
for instruments
Evidence of adaptation over time.
(Marwit et al. 2006) Primary caregiver None Cross sectional;
instrument
validation
N=28 caregivers
of persons with
acquired BI;
(spouse/partner,
adult child,
relative or
friend)
Marwit-Meuser
Caregiver Grief
Inventory;
Caregiver well-
being scale-basic
needs; Caregiver
Strain Index;
Perceived Social
Support
Questionnaire;
Beck Depression
Inventory
No relationship found between
ABI level of function, years since
injury, and measures of caregiver
grief, depression, wellbeing, strain
or perceived social support.
Small sample size did not allow
factor analysis of tool in this new
population.
(McPherson et al. 2000) Individual
caregiver
None Cross-sectional
(15–18 months
post-discharge
from inpatient
rehabilitation)
N=70 caregivers
of survivors of
acquired brain
injury (TBI
60%). Mixed
population of
spouses,
parents, others.
Age range of
respondents 14–
76 years.
Short Form-36;
Caregiver Strain
Index
Strain levels of TBI caregivers
higher than for other types of
acquired BI, but this not
significant. Spouses reported
worse perceived health on the SF-
36 in comparison to parent
caregivers.
Morris (2001) Primary caregiver None Pre/post test
design; evaluate
effectiveness of
informational
booklet on TBI
to caregivers
N=34 primary
caregivers of
TBI survivors
grouped into
early (2–9 mo)
or late (>1 yr)
following injury
General Health
Questionnaire;
Symptom
Checklist; Hospital
Anxiety and
Depression Scale;
Questionnaire about
booklet
Booklet would have been most
useful if provided at discharge. No
significant change in anxiety,
depression or symptom scores.
(Murray et al., 2006) Individual Family
members/caregivers
None Cross-sectional
(range 5
months-14.5
years post-
injury
N=66 caregivers
of person with
acquired brain
injury ; mix of
parents, spouse,
others
Family Needs
Questionnaire;
Content analysis of
open-ended
questions
Acquired brain injury includes
traumatic, chronic or pathological
injury. About one half of
caregivers reported partially or
unmet needs.
(Nabors et al. 2001) Individual
caregiver
None Cross sectional
at least 1 year
post-injury
(range 12–52
months)
(N= 45) 24
African
American and
21 White
caregivers of
TBI survivors at
least 1-year
post-injury. Age
range 21–73;
defined as FM
directly
involved in care
upon d/c from
rehab
Head Injury Family
Interview;
Family Needs
Questionnaire
(FNQ);
Family Assessment
Device;
Personality
Assessment
Inventory
The younger the caregiver the
fewer the needs that
were met. African American and
White caregivers exhibited similar
patterns of adjustment after TBI.
(Rapport et al. 2006) Individual
caregiver
None Cross sectional
at 1, 2 or 5
years post-
injury
N=249
caregivers of
TBI survivors;
mix of parents,
spouses, others
ranged
Not listed Prevalence of depression 17%,
anxiety 16%, somatization 21%,
and low satisfaction with life
23%; but more than 40% of
caregivers who exceeded
clinical cutoffs did not receive
treatment. House of worship was
primary source of support.
(Perlesz et al. 2000) Individual with TBI
and primary,
secondary and
tertiary caregivers
None Cross sectional 79 Families (65
TBI survivors;
72 primary
caregivers; 43
secondary
carers; 22
tertiary)
(age at time of
injury ranged 16
to >66 yoa)
Family Satisfaction
Scale; Beck
Depression
Inventory; State
Anxiety Inventory;
POMS; Head Injury
Family Interview
Gender differences seen among
primary caregivers; wives are at
greatest risk of poor psychological
risk and report much more
responsibility than prior to injury.
(Ponsford et al. 2003) Dyad (TBI survivor
and a close family
member)
None Cross sectional
at 2, 3 or 5
years post-
injury
N= 143 TBI
survivors and a
“close family
member” (65%
brought FM)
Family Assessment
Device (FAD);
Leeds Scales for
Self-Assessment of
Anxiety and
Depression;
Structured Outcome
Questionnaire;
Sickness Impact
Profile
Level of family adjustment in
those participating was reasonably
healthy. Stepwise regression
analysis examining strongest
predictors of functioning were the
number of cognitive, behavioural
and emotional changes
reported in the injured relative
(Sander et al., 2007) Individual
Caregiver
None Nested Cross-
sectional 1 year
post-injury
N=195
caregivers.
Blacks and
Hispanics
grouped
together due to
small sample
size for
comparison to
Whites.
Ways of Coping
Questionnaire;
Caregiver Appraisal
Scale; Brief
Symptom Inventory
Implied model: cultural context of
care. Blacks/Hispanic caregivers
reported more distress than whites
in contrast to prior studies.
Limited generalizability due to
grouping of racial and ethnic
categories acknowledged.
(Struchen et al. 2002) Individual
Caregivers
Stress (Lazarus
& Folkman)-
Appraisal
Cross sectional;
instrument
validation
N=241 (149 in
TBI model
systems; 92 in
rehab)
Caregiver Appraisal
Scale; Subjective
Burden Scale;
Objective Burden
Questionnaire;
General Health
Questionnaire
Factor analysis yielded similar
structure to that for caregivers of
frail older adults (Lawton et al.,
1989).
Caregiving mastery had poor
internal consistency. Physical
burden, caregiver relationship
satisfaction and caregiver ideology
performed well.
(Watanabe et al. 2001) Individual
Family Member
None Cross sectional (N=30) 18
British family
members and 12
Japanese Family
Members of
TBI Survivors
living in same
household and
providing most
care in Japan
Family experience
and attitudes
questionnaire;
Stress scale; Family
problems and
solutions
questionnaire;
Family needs
questionnaire
(FNQ)
Implied model: Cultural context of
care. Needs not different between
the 2 groups. to some extent,
Japanese FM were significantly
worried about opinions of non-
household relatives and others.
British FMwho reported social
embarrassment appeared to
experience higher levels of mental
and physical stress
(Wells et al. 2005) Dyad (TBI survivor
and primary
caregiver)
None Cross sectional
(mean time
since injury 1–
40 years)
72 pairs of
adults;
(caregivers were
52 spouses, 17
parents, 1
grandparent, 1
cousin)
Brock Adaptive
Functioning
Questionnaire ;
Zarit Caregiving
Stress
Questionnaire Short
Form;
Questionnaire on
Resources and
Stress;
Symptom Checklist
(SCL-90);
Satisfaction with
Life; Family
Coping Strategies
(F-Copes)
Wide variation in PTA; length of
unconsciousness.
Positive caregiving
feelings>Negative.
Loss of income following injury
related to more negative feelings.
No behavioral change on part of
TBI patient added to predicting
positive care feelings. Recruited
351; so sample bias possible.

The unit of analysis in the majority of studies (n=21) was the individual caregiver or family member. Very few studies of caregivers have focused on a particular type of individual eg. spouse in these studies. Thus there is a high degree of variability in the type of family members represented within studies. Some studies have focused on the dyad (n=4) of the TBI survivor and the caregiver/family member (Carnevale, Anselmi, Busichio, & Millis, 2002; Ergh, Rapport, Coleman, & Hanks, 2002; Ponsford, Olver, Ponsford, & Nelms, 2003; Wells, Dywan, & Dumas, 2005); but only a single group (Gan, Campbell, Gemeinhardt, & McFadden, 2006; Gan & Schuller, 2002) has focused on the family system, which is a framework that centers on the family as a whole and the interactions within the family, rather than an individual member. Using a theoretical approach that views the family holistically, is logical as the sequelae of TBI can be far reaching beyond any individual (Gan & Schuller, 2002).

From this review, there were conceptual and methodological issues identified across the studies. This resulted in the inability to recommend any of the instruments used in the present studies for use without further study. These identified issues included: a lack of conceptual framework for construct validity, variability in injury characteristics, issues with sampling methodology, a lack of longitudinal designs, comparison group issues and an inability to compare instruments across studies.

Discussion

Lack of conceptual framework for construct validity

There was a lack of an explicit conceptual framework present in the majority of studies (Table 1 and Table 2). This absence of a clear framework was then manifested in a wide range of concepts of family functioning presented by various authors (See Table 2) across studies as outcomes of interest. The concepts presented in the various papers could be classified as having positive, negative, or neutral connotations for functioning. This lack of conceptual clarity likely influenced other issues such as design, comparison and interpretation (Hutchison, 1999; O'Reilly, 1988).

Table 2.

Concepts of Family Functioning Identified in Reviewed Articles

Positive Valued Concepts Negative Valued Concepts Neutral Concepts
Quality of Life Caregiver Distress Caregiver Functioning
Caregiver Adjustment Psychological Distress Caregiver Appraisal
Life Satisfaction Caregiver Depression Family Needs
Psychological Well-being Caregiver Stress Perceived Health
Family Empowerment Caregiver Burden
Caregiver Coping Carer Strain

Variability in Injury Characteristics

Many issues frequently encountered in the cross- sectional studies centered around the sampling methods (e.g. multiple injury severities, the wide range of time since injury in many cross sectional studies, and inclusion of child/parent/siblings in single studies). Injury severity may play a large role in the type of sequelae that result following TBI and thus influence the caregiver/family’s function over time. The studies reviewed in this paper often included wide ranges in brain injury severity indicators such as post-traumatic amnesia and length of unconsciousness (e.g. Wells et al., 2005) which may have influenced these but were not used as covariates in the analyses. Time since injury also varied widely in the majority of the cross-sectional designs; in some cases from a few months to up to 30 or 40 years post-injury (Katz, Kravetz, & Grynbaum, 2005); Wells et al., 2005). While this may have allowed for larger sample sizes, it is not representative of a population, thus the ability to draw any real inference or to identify an effective intervention is significantly reduced. In only a few studies was the cross-sectional study designed to assure sampling a temporally similar group of caregivers (Kolakowsky-Hayner, Miner, & Kreutzer, 2001; Marsh, Kersel, Havill, & Sleigh, 1998a, 1998b; McPherson, Pentland, & McNaughton, 2000). Lastly, for several of the studies (e.g. (Marwit & Kaye, 2006; McPherson, Pentland, & McNaughton, 2000), the inclusion criteria were family members or caregivers of persons with acquired brain injury which is not exclusive to TBI, but also includes chronic or pathological injury such as stroke. The use of these broad inclusion criteria was stated by the authors to be deliberate to increase sample size (Murray, Maslany, & Jeffery, 2006). For most analyses; however, this actually represents multiple perspectives of multiple types of recovery experiences, rather than a single uniform analysis.

Issues with sampling methodology

Often the samples selected were not an optimal match for the research question of interest; frequently the samples were convenience samples from secondary sources (See Table 1-Study Design; Sample) or from patients presenting in clinic. While the stated purpose of many studies was to elucidate family members’ or caregiver’s experiences, they did not approach this from multiple persons within a single family, so the study could only really attempt to describe the experience of a single family member’s experience. Also, in using a convenience sample often the defining characteristics were ill-defined, e.g. in many samples “Frequent close contact” was required, but this was not explicitly defined and could vary widely based on the subjects’ interpretation; this differed from other studies in which the subjects were required to reside in the same household to define “family”. This could have greatly influenced the types of responses.

In many of the studies, despite the use of a cross-sectional design and the use of convenience sampling, the numbers obtained were relatively small. The sample sizes varied from 28 to 249. In the larger sample sizes, these were generally mixed populations of various types of family members, with wide age ranges, various types of injury (mild and severe in same group), so again the issue of multiple perspectives of multiple types of recovery experiences pooled together is raised as study limitations.

Relative lack of longitudinal designs

The majority of studies (n=23) available were cross-sectional designs. A single study (Marsh, Kersel, Havill, & Sleigh, 2002) has examined the individual experience of individual primary caregivers of adults discharged from rehabilitation services participating in the TBI model systems program. The authors reported that there was an adaptation of the caregiver in the period from 6 months to one year post-injury. They also found that social isolation and behavioral problems of the TBI patient were predictive of burden. Limitations in the cross-sectional designs again include the times chosen to report outcomes of family members/caregivers varied widely based again primarily on convenience and included unusual timepoints e.g. 40 years post-injury (See Table 1).

Comparison group issues

In several studies the comparison group selected included rehabilitation professionals (Man, 2002) or professional caregivers (Godfrey et al., 2003). The selection or inclusion of these groups is not particularly informative in describing caregiver functioning as defined by the investigators. Frequently, the comparison group selected was convenient, but not concordant with the research question of interest. An additional issue was that researchers made temporal assertions based on comparisons of differing times since injury of various families/caregivers in cross-sectional studies. These are not valid comparisons to make.

Inability to compare instruments across studies

Many researchers sought to develop or validate their own family/caregiver functioning instrument for use in TBI and specifically developed the instrument for the study reported. Seven of the 27 studies reviewed were testing new instruments, often with insufficient data provided on reliability and validity. Across the 27 studies more than 50 different instruments (See Table 1-Instruments) were used to measure family/caregiver functioning and only rarely (e.g. Beck Depression Scale, Family Needs Questionnaire, Caregiver Appraisal Scale) was an instrument used in more than one study, thus there is an inability to compare instruments across studies of family functioning in TBI.

Recommendations for Future Studies

In future cross-sectional studies, it will be particularly useful to evaluate a particular family member’s/caregiver’s perspective of the recovery experience of the same level of TBI severity at a similar time-point post-injury. In designing or reporting future studies, when data is obtained from intake assessments, more information would be particularly useful in interpreting findings in relationship to generalizability to those persons who do not seek treatment for TBI or qualify for rehabilitation services. This work would be better done with a clear time of assessment post-injury defined (e.g. 2 years post injury when most plasticity and recovery has occurred or within 1 year of injury when the adjustment and service use is really the greatest). In particular, a prospective longitudinal study that enroll families near the time of injury and includes an assessment of pre-injury functioning as a baseline measure would be especially useful.

Limitations of this Review

This review is limited in that only published articles available on-line in English were reviewed from particular databases and gray literature (e.g. dissertations) were not included, thus some bias may have been introduced. Attempts to reduce bias in this review were maintained via the use of clear questions to guide the literature review, a threshold for inclusion of studies and systematic methods evaluate the research literature.

Summary

The lack of conceptual clarity within the field of family functioning in TBI has resulted in a lack of consistent use of terminology and has led to the use of more than 50 instruments across various studies and the continual development of additional, yet poorly justified tools. There is a clear need to conduct an evolutionary concept analysis of family functioning in TBI and to gain a lucid, comprehensible definition of the idea prior to continuing additional work in this area. Based upon this review, the author was unable to answer the second research question since there was insufficient data to be able to recommend any TBI-specific instrument for use with caregivers/family members, let alone recommend its’ with use of older populations. The use of well-validated family function and caregiving instruments from other fields, such as geriatrics, is recommended in the interim for ongoing and planned family TBI research with older adults. These studies should focus on longitudinal analyses of a family functioning within the context of a focused TBI population (e.g. mild brain injury). Additionally, these studies should account for differences in family development in their sampling structures (e.g. children of parents with TBI should be examined separately from spousal issues) until there is a clear understanding of these issues. Once a better understanding of family functioning within the family system has been obtained, comparison across these populations can occur.

Acknowledgements

The author thanks Dr. Karen Schepp for thoughtful discussions regarding this work. This work was funded, in part, by the Building Geriatric Academic Nursing Capacity Program, John A. Hartford Foundation and the NIH Roadmap for Medical Research, KL2RR025015-01.

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