A critical analysis of measures of caregiver and family functioning following traumatic brain injury.ABSTRACTMore than 5.3 million Americans are living with long-term disability following traumatic brain injury Traumatic brain injury (TBI), traumatic injuries to the brain, also called intracranial injury, or simply head injury, occurs when a sudden trauma causes brain damage. TBI can result from a closed head injury or a penetrating head injury and is one of two subsets of acquired brain (TBI TBI 1. Thyroxine-binding index 2. Total body irradiation ), and approximately 40% of TBI survivors Survivors was a British television series devised by Terry Nation and produced by Terence Dudley at the BBC from 1975 to 1977. It concerned the plight of a group of people who had survived an accidentally released plague that had killed nearly the entire population of the report at least one unmet un·met adj. Not satisfied or fulfilled: unmet demands. need at 1 year postinjury. The totality TOTALITY. The whole sum or quantity. 2. In making a tender, it is requisite that the totality of the sum due should be offered, together with the interest and costs. Vide Tender. of the problem of TBI may therefore put increased responsibilities on the significant other and the 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 CINAHL Cumulative Index to Nursing and Allied Health Literature Plus, Family Systems Abstracts, and PubMed from 1998 to 2008. Thirty-five articles were identified in 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. The issues identified included a lack of conceptual framework For the concept in aesthetics and art criticism, see . A conceptual framework is used in research to outline possible courses of action or to present a preferred approach to a system analysis project. for construct validity construct validity, n the degree to which an experimentally-determined definition matches the theoretical definition. , variability in injury characteristics, issues with sampling methodology, a lack of longitudinal lon·gi·tu·di·nal adj. Running in the direction of the long axis of the body or any of its parts. designs, comparison group issues, and an inability to compare instruments across studies. ********** More than 1.4 million people sustain a traumatic brain injury (TBI) in the United States United States, officially United States of America, republic (2005 est. pop. 295,734,000), 3,539,227 sq mi (9,166,598 sq km), North America. The United States is the world's third largest country in population and the fourth largest country in area. each year, and more than 5.3 million Americans are living with long-term disability following TBI (Injury Fact Book, 2002). TBI 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 impaired memory Dementia, see there , problems with decision making and problem solving problem solving Process involved in finding a solution to a problem. Many animals routinely solve problems of locomotion, food finding, and shelter through trial and error. , word-finding difficulties, and inappropriate social behavior In biology, psychology and sociology social behavior is behavior directed towards, or taking place between, members of the same species. Behavior such as predation which involves members of different species is not social. . Approximately 40% of TBI survivors report at least one unmet service need at 1 year postinjury (Heinemann Heinemann may refer to:
SOKOL is a combat aircraft manufacturing facility that is also known as "Aviation plant 21", It is an aviation plant named after Sergo , Garvin Garvin may refer to:
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 and older, TBI is responsible for over 80,000 emergency department visits each year, and adults aged 75 years or older have the highest rates of TBI-related hospitalization hospitalization /hos·pi·tal·iza·tion/ (hos?pi-t'l-i-za´shun) 1. the placing of a patient in a hospital for treatment. 2. the term of confinement in a hospital. ; thus, they are a large and growing population within the TBI community (Department of Health and Human Services Noun 1. Department of Health and Human Services - the United States federal department that administers all federal programs dealing with health and welfare; created in 1979 Health and Human Services, HHS , 2000; Langlois Langlois is a surname, and may refer to:
When one partner in an intimate relationship An intimate relationship is a particularly close interpersonal relationship. It is a relationship in which the participants know or trust one another very well or are confidants of one another, or a relationship in which there is physical or emotional intimacy. 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, using the multiple-case study approach, was identified from the literature (Layman LAYMAN, eccl. law. One who is not an ecclesiastic nor a clergyman. , Dijkers, & Ashman Ashman goddess of grain. [Sumerian Myth.: Benét, 57] See : Farming , 2005). This study focused on the experience of older partners of persons with TBI. The authors identified relatedness and relationship persistence (1) In a CRT, the time a phosphor dot remains illuminated after being energized. Long-persistence phosphors reduce flicker, but generate ghost-like images that linger on screen for a fraction of a second. as the two primary themes of interest and noted that there was an inability of couples to discern dis·cern v. dis·cerned, dis·cern·ing, dis·cerns v.tr. 1. To perceive with the eyes or intellect; detect. 2. To recognize or comprehend mentally. 3. normal aging changes versus TBI-related changes (Layman et al., 2005). Thus, given the paucity pau·ci·ty n. 1. Smallness of number; fewness. 2. Scarcity; dearth: a paucity of natural resources. of available research for caregivers or family member functioning of older adult TBI survivors, it is clearly an area warranting further attention. Well-validated instruments of caregiver care·giv·er n. 1. An individual, such as a physician, nurse, or social worker, who assists in the identification, prevention, or treatment of an illness or disability. 2. role functioning are available from the geriatric geriatric /ger·i·at·ric/ (jer?e-at´rik) 1. pertaining to elderly persons or to the aging process. 2. pertaining to geriatrics. ger·i·at·ric adj. 1. literature and include the Kingston Kingston, city, Canada Kingston, city (1991 pop. 56,597), S Ont., Canada, on Lake Ontario, near the head of the St. Lawrence River and at the end of Rideau Canal from Ottawa. Kingston has probably the best harbor on the lake. Caregiver Stress Scale (Hopkins, Killik For the character in the Soul Calibur series, see . In the fictional Star Wars universe, the Killiks are a race of hive mind insectoid creatures believed to be native to the planet Alderaan. They built large moundlike structures on the plains of the planet. , & Day, 2007), the Modified Caregiver Strain Index (Thornton Thornton, city (1990 pop. 55,031), Adams co., NE Colo., a residential and industrial suburb of Denver; inc. 1956. Industries include oil and gas development and the production of computer graphics systems, wood products, coffee and tea, building components, infant & Travis Trav·is , William Barret 1809-1836. American military leader who commanded the Texans who died in the defense of the Alamo (1836). , 2003), and the Zarit Caregiver Burden Scale (Zarit, Reever, & Bach-Peterson, 1980). However, these were originally developed for use in caregivers of persons with dementia dementia (dĭmĕn`shə) [Lat.,=being out of the mind], progressive deterioration of intellectual faculties resulting in apathy, confusion, and stupor. In the 17th cent. , not TBI. 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 or 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 or caregivers? Is this identified measure appropriate for use with older adult TBI survivor family member or 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 to 2008 using the MeSH terms brain injuries, caregivers, and questionnaires and the following restrictions: English, research articles, and 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 TBI survivor outcome, and this was not the focus of research question. Twenty-seven articles remained for full review and analysis (see Table 1). The unit of analysis in most studies (n = 21) was the individual caregiver or family member. Very few studies of caregivers have focused on a particular type of individual, for example, spouse spouse A legal marriage partner as defined by state law , 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 dyad /dy·ad/ (di´ad) a double chromosome resulting from the halving of a tetrad. dy·ad n. 1. Two individuals or units regarded as a pair, such as a mother and a daughter. 2. (n = 4) of the TBI survivor and the caregiver or family member (Carnevale et al., 2002; Ergh, Rapport The former name of device management software from Wyse Technology, San Jose, CA (www.wyse.com) that is designed to centrally control up to 100,000+ devices, including Wyse thin clients (see Winterm), Palm, PocketPC and other mobile devices. , Coleman, & Hanks Noun 1. Hanks - United States film actor (born in 1956) Thomas J. Hanks, Tom Hanks , 2002; Ponsford et al., 2003; Wells et al., 2005), but only a single group (Gan et al., 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 because the sequelae sequelae Clinical medicine The consequences of a particular condition or therapeutic intervention 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 most studies (Tables 1 and 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 articles 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). 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, or siblings siblings npl (formal) → frères et sœurs mpl (de mêmes parents) in single studies). Injury severity may play a large role in the type of sequelae that result following TBI and thus influence the caregiver's or family's function over time. The studies reviewed in this article often included wide ranges in brain injury severity indicators such as posttraumatic amnesia Noun 1. posttraumatic amnesia - loss of memory for events immediately following a trauma; sometimes in effect for events during and for a long time following the trauma anterograde amnesia and length of unconsciousness un·con·scious·ness n. A state of impaired consciousness in which one shows no responsiveness to environmental stimuli but may respond to deep pain with involuntary movements. (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 most of the cross-sectional designs, in some cases, from a few months to up to 30 or 40 years postinjury (Katz Katz , Bernard 1911-2003. German-born British physiologist. He shared a 1970 Nobel Prize for the study of nerve impulse transmission. et al., 2005; Wells et al., 2005). Although this may have allowed for larger sample sizes, it is not representative of a population; thus, the ability to draw any real inference (logic) inference - The logical process by which new facts are derived from known facts by the application of inference rules. See also symbolic inference, type inference. or to identify an effective intervention A procedure used in a lawsuit by which the court allows a third person who was not originally a party to the suit to become a party, by joining with either the plaintiff or the defendant. is significantly reduced. In only a few studies was the cross-sectional study designed to assure sampling a temporally tem·po·ral 1 adj. 1. Of, relating to, or limited by time: a temporal dimension; temporal and spatial boundaries. 2. similar group of caregivers (Kolakowsky-Hayner et al., 2001; Marsh et al., 1998a, 1998b; McPherson et al., 2000). Last, for several of the studies (e.g., Marwit & Kaye, 2006; McPherson et al., 2000), the inclusion criteria
Inclusion criteria are a set of conditions that must be met in order to participate in a clinical trial. were family members or caregivers of persons with acquired brain injury A neurological condition, Acquired Brain Injury (ABI) is damage to the brain acquired after birth. It usually affects cognitive, physical, emotional, social or independent functioning and can result from traumatic brain injury (i.e. accidents, falls, assaults, etc. which is not exclusive to TBI but also includes chronic or pathological 1. pathological - [scientific computation] Used of a data set that is grossly atypical of normal expected input, especially one that exposes a weakness or bug in whatever algorithm one is using. injury such as stroke. The use of these broad inclusion criteria was stated by the authors to be deliberate to increase sample size (Murray Murray, river, Australia Murray, principal river of Australia, 1,609 mi (2,589 km) long, rising in the Australian Alps, SE New South Wales, and flowing westward to form the New South Wales–Victoria boundary. et al., 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 and Sample) or from patients presenting in clinic. Although the stated purpose of many studies was to elucidate e·lu·ci·date v. e·lu·ci·dat·ed, e·lu·ci·dat·ing, e·lu·ci·dates v.tr. To make clear or plain, especially by explanation; clarify. v.intr. To give an explanation that serves to clarify. 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, for example, in many samples, "Frequent close contact" was required, but this was not explicitly defined and could vary widely based on the participants' interpretation; this differed from other studies in which the participants 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 and 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 Most studies (n = 23) available were cross-sectional designs. A single study (Marsh et al., 2002) has examined the individual experience of individual primary caregivers of adults discharged from rehabilitation rehabilitation: see physical therapy. 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 1 year postinjury. They also found that social isolation and behavioral behavioral pertaining to behavior. behavioral disorders see vice. behavioral seizure see psychomotor seizure. 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 or caregivers varied widely based again primarily on convenience and included unusual time points, for example, 40 years postinjury (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 Having to do with time. Contrast with "spatial," which deals with space. assertions based on comparisons of differing times since injury of various families or 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 To prove something to be sound or logical. Also to certify conformance to a standard. Contrast with "verify," which means to prove something to be correct. For example, data entry validity checking determines whether the data make sense (numbers fall within a range, numeric data their own family or 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 or caregiver functioning, and only rarely (e.g., Beck Depression Scale, Family Needs Questionnaire, and 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 or caregiver's perspective of the recovery experience of the same level of TBI severity at a similar time point postinjury. In designing or reporting future studies, when data are 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 of TBI or qualify for rehabilitation services. This work would be better done with a clear time of assessment postinjury defined (e.g., 2 years postinjury when most plasticity and recovery have occurred or within 1 year of injury when the adjustment and service use are really the greatest). In particular, a prospective longitudinal study longitudinal study a chronological study in epidemiology which attempts to establish a relationship between an antecedent cause and a subsequent effect. See also cohort study. that enrolls families near the time of injury and includes an assessment of preinjury functioning as a baseline The horizontal line to which the bottoms of lowercase characters (without descenders) are aligned. See typeface. baseline - released version measure would be especially useful. Limitations of This Review This review is limited in that only published articles available online in English were reviewed from particular databases and gray literature (e.g., dissertations) was 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 and a threshold for inclusion of studies, and systematic methods evaluated 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 com·pre·hen·si·ble adj. Readily comprehended or understood; intelligible. [Latin compreh definition of the idea prior to continuing additional work in this area. On the basis of this review, the author was unable to answer the second research question because there were insufficient data to be able to recommend any TBI-specific instrument for use with caregivers or family members, let alone recommend its use with older populations. The use of well-validated family function and caregiving instruments from other fields, such as geriatrics geriatrics (jĕrēă`trĭks), the branch of medicine concerned with conditions and diseases of the aged. Many disabilities in old age are caused by or related to the deterioration of the circulatory system (see arteriosclerosis), e.g. , 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). In addition, 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 spou·sal adj. 1. Of or relating to marriage; nuptial. 2. Of or relating to a spouse. n. Marriage; nuptials. Often used in the plural. 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. Acknowledgments This work was funded in part by the Building Geriatric Academic Nursing Capacity Program, John A. Hartford Foundation Hartford Foundation, fund established (1929) by retail food merchants John A. Hartford (1872–1951) and George L. Hartford (1864–1957) of the Great Atlantic and Pacific Tea Company (A&P) as a philanthropic institution with the general purpose of doing , and the National Institutes of Health Roadmap for Medical Research (Grant KL2RR025015-01). The author thanks Dr. Karen Schepp for thoughtful discussions regarding this work. References Anderson Anderson, river, Canada Anderson, river, c.465 mi (750 km) long, rising in several lakes in N central Northwest Territories, Canada. It meanders north and west before receiving the Carnwath River and flowing north to Liverpool Bay, an arm of the Arctic , M. I., Parmenter, T. R., & Mok, M. (2002). 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Life satisfaction and distress in family caregivers as related to specific behavioural Adj. 1. behavioural - of or relating to behavior; "behavioral sciences" behavioral changes after traumatic brain injury. Brain Injury, 19(13), 1105-1115. Wood, R. L., & Yurdakul, L. K. (1997). Change in relationship status following traumatic brain injury. Brain Injury, 11(7), 491-501. Zarit, S. H., Reever, K. E., & Bach-Peterson, J. (1980). Relatives of the impaired elderly: Correlates of feelings of burden. Gerontologist ger·on·tol·o·gy n. The scientific study of the biological, psychological, and sociological phenomena associated with old age and aging. ge·ron , 20(6), 649-655. Questions or comments about this article may be directed to Hilaire J. Thompson Thompson, city, Canada Thompson, city (1991 pop. 14,977), central Man., Canada, on the Burntwood River. A mining town, it developed after large nickel deposits were discovered in the area in 1956. , PhD RN CNRN CNRN Certified Neuroscience Registered Nurse (American Association of Neuroscience Nurses) CNRN Comitato Nazionale per le Ricerche Nucleari (Italy) FAAN FAAN abbr. Fellow of the American Academy of Nursing , at hilairet@ u.washington.edu. She is an assistant professor, Biobehavioral Nursing and Health Systems, University of Washington, Seattle, WA.
TABLE 1. A Comparison of Studies of Caregiver and Family Functioning
in TBI
Unit of Conceptual
Reference Analysis Framework
Anderson, Spouse or partner of Conservation of
Parmenter, and TBI survivor resources theory of
Mok (2002) psychological distress
of Hobfoll and
Spielherger and
Epstein's McMaster
Model of Family
Functioning
Brown et al. Individual caregivers None
(1999)
Carnevale, Dyad Stress-Appraisal-
Anselmi, Coping Model
Busichio, and
Millis (2002)
Ergh et al. Dyad Well-being
(2002)
Gan and Family (also reported Family Systems
Schuller (2002) BI vs. family) Framework
Gan, Campbell, Family system (also Family Systems
Gemeinhardt, and reported individual) Framework
McFadden (2006)
Godfrey et al. Individual caregiver None
(2003)
Hanks, Rapport, Individual caregiver Stress-Appraisal-
and Vangel Coping Model
(2007)
Harris, Godfrey, Individual caregivers Stress-Appraisal-
Partridge, and Coping Model
Knight (2001)
Katz, Kravetz, Wife Subjective versus
and Grynbaum objective caregiver
(2005) burden of Brooks
and Aughton
Kolakowsky-Hayner, Individual caregiver None
Miner, and
Kreutzer (2001)
Man (2002) Individual family None
member
Marsh, Kersel, Individual caregiver None
Havill, and
Sleigh (1998a)
Marsh, Kersel, Individual caregiver None
Havill, and
Sleigh (1998b)
Marsh, Kersel, Individual caregiver None
Havill, and
Sleigh (2002)
Marwit and Kaye Primary caregiver None
(2006)
McPherson, Individual caregiver None
Pentland, and
McNaughton
(2000)
Morris (2001) Primary caregiver None
Murray, Maslany, Individual family None
and Jeffery members or caregivers
(2006)
Nabors, Seacat, Individual caregiver None
and Rosenthal
(2002)
Rapport, Individual caregiver None
Kreutzer, Hart,
and Marwitz (2006)
Perlesz, Kinsella, Individual with TBI None
and Crowe and primary,
(2000) secondary, and
tertiary caregivers
Ponsford, Olver, Dyad (TBI survivor and None
Ponsford, and a close family member)
Nelms (2003)
Sander et al. Individual caregiver None
(2007)
Struchen, Atchison, Individual caregivers Stress (Lazarus &
Roebuck, Caroselli, Folkman, 1984)--
and Sander (2002) Appraisal
Watanabe, Shiel, Individual family None
McLellan, member
Kurihara, and
Hayashi (2001)
Wells, Dywan, Dyad (TBI None None
and Dumas (2005) survivor and primary
caregiver)
Reference Study Design Sample
Anderson, Path analysis n = 74; spouse or
Parmenter, and partners of TBI
Mok (2002) survivors (age range
of TBI patient = 27-75
years; time since
injury = 5-184 months)
Brown et al. Quasi-experimental Caregivers (family
(1999) pretest-posttest member or significant
design; evaluate other) living within
effectiveness of 40 km (n = 169) versus
face-to-face versus those living >40 km (n
telephone caregiver = 146)
support groups
Carnevale, Randomized controlled n = 27; TBI survivors
Anselmi, trial of educational and their caregivers
Busichio, and program and education (n = 27)
Millis (2002) plus behavior
management versus
control
Ergh et al. Cross-sectional (range n = 120 (60 pairs of
(2002) postinjury = 4 months TBI survivors and
to 10 years) caregivers)
Gan and Cross-sectional; n = 92
Schuller (2002) instrument development
Gan, Campbell, Cross-sectional; at n = 214 from registry;
Gemeinhardt, and time seeking 66 BI persons and 148
McFadden (2006) rehabilitation family members (mean
services; instrument time since injury =
validation 5.7 years; age range
of family member =
14-55 years)
Godfrey et al. Cross-sectional; n = 242; 88 parents,
(2003) instrument validation 81 spouses, 11
(factor analysis) siblings, 34 other
relatives, 14 friends,
and 13 other
acquaintances (e.g.,
professional
caregivers)
Hanks, Rapport, Cross-sectional (6 n = 60; primary
and Vangel months-15 years caregivers of persons
(2007) postinjury) with TBI
Harris, Godfrey, Cross-sectional n = 58; caregivers
Partridge, and (between 6 months identified by persons
Knight (2001) and 3 years with TBI (age range of
following injury) TBI survivor = 15-64
years; 47% parents;
PTA 24 hr-10 weeks)
Katz, Kravetz, Cross-sectional n = 40; wives of
and Grynbaum persons with TBI
(2005) (range of time since
injury = 1-32 years)
Kolakowsky-Hayner, Cross-sectional at n = 57; caregivers of
Miner, and least 4 years persons with TBI (age
Kreutzer (2001) postinjury range = 19-82 years;
72% lived with person;
35% spent every day
with)
Man (2002) Cross-sectional; Group 1: 221 mixed
instrument development group of family
members of persons
with TBI; group 2: 65
rehabilitation
professionals
Marsh, Kersel, Cross-sectional at 6 n = 69; primary
Havill, and months postinjury caregiver of adult
Sleigh (1998a) with TBI
Marsh, Kersel, Cross-sectional at 1 n = 69; primary
Havill, and year postinjury caregiver of adult
Sleigh (1998b) with TBI
Marsh, Kersel, Longitudinal (combined n = 52; primary
Havill, and prior data 6 months caregiver of adult
Sleigh (2002) and 1 year) with TBI
Marwit and Kaye Cross-sectional; n = 28; caregivers of
(2006) instrument validation persons with acquired
BI; (spouse or
partner, adult child,
relative, or friend)
McPherson, Cross-sectional (15-18 n = 70; caregivers of
Pentland, and months postdischarge survivors of acquired
McNaughton from inpatient brain injury (TBI =
(2000) rehabilitation) 60%); mixed population
of spouses, parents,
and others; age range
of respondents = 14-76
years
Morris (2001) Pretest Posttest n = 34; primary
design; evaluate caregivers of TBI
effectiveness of survivors grouped into
informational booklet early (2-9 months) or
on TBI to caregivers late (>1 year)
following injury
Murray, Maslany, Cross-sectional (range n = 66; caregivers of
and Jeffery = 5 months-14.5 years person with acquired
(2006) postinjury) brain injury; mix of
parents, spouse, and
others
Nabors, Seacat, Cross-sectional at n = 45; 24 African
and Rosenthal least 1 year American and 21 White
(2002) postinjury (range = caregivers of TBI
12-52 months) survivors at least 1
year postinjury; age
range = 21-73 years;
defined as family
member directly
involved in care upon
discharge from
rehabilitation
Rapport, Cross-sectional at 1, n = 249; caregivers of
Kreutzer, Hart, 2, or 5 years TBI survivors; mix of
and Marwitz (2006) postinjury parents, spouses, and
others
Perlesz, Kinsella, Cross-sectional 79 families (65 TBI
and Crowe survivors, 72 primary
(2000) caregivers, 43
secondary carers, and
22 tertiary); age
range at time of
injury = 16 to >66
years
Ponsford, Olver, Cross-sectional at 2, n = 143; TBI survivors
Ponsford, and 3, or 5 years and a "close family
Nelms (2003) postinjury member" (65% brought
family member)
Sander et al. Nested cross-sectional n = 195 caregivers;
(2007) 1 year postinjury Blacks and Hispanics
grouped together due
to small sample size
for comparison to
Whites
Struchen, Atchison, Cross-sectional; n = 241; 149 in TBI
Roebuck, Caroselli, instrument validation model systems, 92 in
and Sander (2002) rehabilitation
Watanabe, Shiel, Cross-sectional n = 30; 18 British
McLellan, family members and 12
Kurihara, and Japanese family
Hayashi (2001) members of TBI
survivors living in
the same household and
providing most care in
Japan
Wells, Dywan, Cross-sectional 72 pairs of adults;
and Dumas (2005) (mean time since (caregivers were 52
injury = 1-40 years) spouses, 17 parents, 1
grandparent, and 1
cousin)
Instrument(s) uses to
Measure Caregiver or
Reference Family Functioning Findings and Comments
Anderson, Problem Checklist of TBI survivor
Parmenter, and General Health and behavioral problems
Mok (2002) History Questionnaire, were the strongest
Family Assessment predictor of caregiver
Device, Global psychological
Severity Index, Brief distress.
Symptom Inventory Communication and
social problems have
linear relationship
with symptoms of
psychological
distress.
Brown et al. POMS, Caregiver Burden Similar results were
(1999) Inventory, McMaster seen with both
Model Family methods. Rural
Assessment Device telephone support
group participants
reported fewer
difficulties on most
scales, so may be this
is a good option for
this population.
Carnevale, Questionnaire on Initial levels of
Anselmi, Resources and Stress caregivers' burden and
Busichio, and for Families With distress were highly
Millis (2002) Chronically III or predictive of those at
Handicapped Members, 14 weeks (outcome). It
Maslach Burnout has low sample size
Inventory per group.
Ergh et al. Neuropsychology Social support was
(2002) Behavior and Affect found to be positive
Profile-Significant mediator; however, TBI
Other Form, Social survivor
Provision Scale, neurobehavioral issues
Satisfaction With were associated with
Living Scale lower caregiver life
satisfaction
regardless of social
support.
Gan and FAM-III Family defined as
Schuller (2002) those living in same
household.
See Gan et al.'s
(2006) study as it
includes this sample.
Family perceived
greater differences in
functioning than that
of BI person.
Gan, Campbell, FAM-III Family defined as
Gemeinhardt, and those living in same
McFadden (2006) household.
Pooling effect was
seen when family unit
of analysis was used,
however, fathers
reported less stress
when analyzed
individually. BI
families were
statistically
different from
normative but unclear
if it is clinically
significant as it
still is in the
"normal range."
Godfrey et al. Head Injury Two-factor solution:
(2003) Behavior Scale emotional and
behavioral regulation
Hanks, Rapport, Caregiver Appraisal Perception of social
and Vangel Scale, Coping support is highly
(2007) Inventory for related to perceived
Stressful Situations, burden, caregiving
Family Assessment mastery, and
Device, Social satisfaction. Coping
Provisional Scale style was related to
caregiving
satisfaction: better
among those who use
task-oriented coping
and less
emotion-focused
coping.
Harris, Godfrey, Social Behaviour 23% of caregivers were
Partridge, and Assessment Schedule, experiencing
Knight (2001) Zung Depression Scale 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, Kravetz, Perceived Burden Wives with low coping
and Grynbaum Questionnaire, flexibility were
(2005) Lester's Ways of perceived to have
Coping Questionnaire higher burden at
earlier times after
injury; however, it is
unclear if post hoc
analysis was performed
correctly since
degrees of freedom are
erroneous for the
interaction term.
Kolakowsky-Hayner, Virginia Traumatic The study demonstrated
Miner, and Brain Injury Family a decline in family
Kreutzer (2001) Needs Assessment members' quality of
Survey 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 (2002) Family Empowerment Differences noted
Questionnaire between rehabilitation
professionals and Hong
Kong Chinese family
members on four
empowerment factors
may have clinical
implications for care
provision.
Marsh, Kersel, Beck Depression Anxiety, depression,
Havill, and Inventory, Trait and social adjustment
Sleigh (1998a) Anxiety Inventory, problems were present
Head Injury Behavior in one third of
Rating Scale, caregivers at 6
Caregiving months. Social
Questionnaire isolation and negative
emotions of TBI
survivor associated
with most distress,
whereas behavioral
problems have most
impact overall on
caregiver function at
6 months.
Marsh, Kersel, See Marsh et al. Number of behavioral
Havill, and (1998a) for problems and physical
Sleigh (1998b) instruments impairment of the TBI
survivor as well as
social isolation were
strongest predictors
of burden. Caregiver
distress resulted from
TBI survivor's
emotional difficulties
such as anger. Most
impact was loss of
personal time on the
part of caregiver.
Marsh, Kersel, See Marsh (1998a) for Evidence of adaptation
Havill, and instruments over time.
Sleigh (2002)
Marwit and Kaye Marwit-Meuser No relationship was
(2006) Caregiver Grief found between acquired
Inventory, Caregiver brain injury, level of
Well-being Scale-Basic function, years since
Needs, Caregiver injury, and measures
Strain Index, of caregiver grief,
Perceived Social depression,
Support Questionnaire, well-being, strain, or
Beck Depression perceived social
Inventory support.
Small sample size did
not allow factor
analysis of tool in
this new population.
McPherson, Short Form 36, Strain levels of TBI
Pentland, and Caregiver Strain Index caregivers higher than
McNaughton for other types of
(2000) acquired BI, but this
was not significant.
Spouses reported worse
perceived health on
the Short Form 36 in
comparison to parent
caregivers.
Morris (2001) General Health Booklet would have
Questionnaire, Symptom been most useful if
Checklist, Hospital provided at discharge.
Anxiety and Depression No significant change
Scale, questionnaire in anxiety,
about booklet depression, or symptom
scores.
Murray, Maslany, Family Needs Acquired brain injury
and Jeffery Questionnaire, content includes traumatic,
(2006) analysis of open-ended chronic, or
questions pathological injury.
About one half of
caregivers reported
partially or unmet
needs.
Nabors, Seacat, Head Injury Family The younger the
and Rosenthal Interview, Family caregiver, the fewer
(2002) Needs Questionnaire, the needs that were
Family Assessment met. African American
Device, Personality and White caregivers
Assessment Inventory exhibited similar
patterns of adjustment
after TBI.
Rapport, Not listed Prevalence of
Kreutzer, Hart, depression was 17%;
and Marwitz (2006) 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, Kinsella, Family Satisfaction Gender differences
and Crowe Scale, Beck Depression seen among primary
(2000) Inventory, State caregivers; wives are
Anxiety Inventory, at greatest risk of
POMS, Head Injury poor psychological
Family Interview risk and reported much
more responsibility
than prior to injury.
Ponsford, Olver, Family Assessment Level of family
Ponsford, and Device, Leeds Scales adjustment in those
Nelms (2003) for Self-assessment of participating was
Anxiety and reasonably healthy.
Depression, Structured Stepwise regression
Outcome Questionnaire, analysis examining
Sickness Impact strongest predictors
Profile of functioning was the
number of cognitive,
behavioral, and
emotional changes
reported in the
injured relative.
Sander et al. Ways of Coping Implied model:
(2007) Questionnaire, cultural context of
Caregiver Appraisal care. Blacks and
Scale, Brief Symptom Hispanic caregivers
Inventory reported more distress
than did Whites in
contrast to prior
studies. Limited
generalizability due
to grouping of racial
and ethnic
categories was
acknowledged.
Struchen, Atchison, Caregiver Appraisal Factor analysis
Roebuck, Caroselli, Scale, Subjective yielded similar
and Sander (2002) Burden Scale, structure to that for
Objective Burden caregivers of frail
Questionnaire, General older adults (Lawton
Health Questionnaire et al., 1989).
Caregiving mastery had
poor internal
consistency. Physical
burden, caregiver
relationship
satisfaction, and
caregiver ideology
performed well.
Watanabe, Shiel, Family experience and Implied model:
McLellan, attitudes cultural context of
Kurihara, and questionnaire, stress care. Needs were not
Hayashi (2001) scale, family problems different between the
and solutions two groups. To some
questionnaire, Family extent, Japanese
Needs Questionnaire family members were
significantly worried
about opinions of
nonhousehold relatives
and others. British
family members who
reported social
embarrassment appeared
to experience higher
levels of mental and
physical stress.
Wells, Dywan, Brock Adaptive Wide variation in PTA;
and Dumas (2005) Functioning length of
Questionnaire, Zarit unconsciousness
Caregiving Stress Positive caregiving
Questionnaire Short feelings greater than
negative feelings
Form, Questionnaire on Loss of income
Resources and Stress, following injury was
Symptom Checklist-90, related to more
Satisfaction With negative feelings. No
Life, Family Coping behavioral change on
Strategies (F-Copes) part of TBI patient
added to predicting
positive care
feelings. The study
recruited 351, so
sample bias was
possible.
Note. TBI = traumatic brain injury; POMS = profile of mood states;
FAM = Family Assessment Measure; BI = brain-injured; PTA =
posttraumatic amnesia.
TABLE 2. Concepts of Family Functioning Identified in Reviewed
Articles
Positive Valued Negative Valued Neutral Concepts
Concepts 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
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