A critical analysis of measures of caregiver and family functioning following traumatic brain injury.ABSTRACT
More 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
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
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
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
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
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.
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?
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.
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.
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
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
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
To make clear or plain, especially by explanation; clarify.
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.
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.
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
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
1. Of or relating to marriage; nuptial.
2. Of or relating to a spouse.
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.
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.
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Any of several small coins of low value formerly used in Austria and Germany.
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tr.v. in·jured, in·jur·ing, in·jures
1. To cause physical harm to; hurt.
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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
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