Journal of Neuroscience Nursing:
A Critical Analysis of Measures of Caregiver and Family Functioning Following Traumatic Brain Injury
Thompson, Hilaire J.
Questions or comments about this article may be directed to Hilaire J. Thompson, PhD RN CNRN FAAN, at firstname.lastname@example.org. She is an assistant professor, Biobehavioral Nursing and Health Systems, University of Washington, Seattle, WA.
ABSTRACT: More than 5.3 million Americans are living with long-term disability following traumatic brain injury (TBI), and approximately 40% of TBI survivors report at least one unmet need at 1 year postinjury. The totality 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 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 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.
More than 1.4 million people sustain a traumatic brain injury (TBI) in the United States 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, 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 postinjury (Heinemann, Sokol, Garvin, & Bode, 2002). To attempt to meet unmet needs following injury in TBI patients, increased responsibilities may be placed on the significant other or 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 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; thus, they are a large and growing population within the TBI community (Department of Health and Human Services, 2000; Langlois, Rutland-Brown, & Thomas, 2004).
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, using the multiple-case study approach, was identified from the literature (Layman, Dijkers, & Ashman, 2005). This study 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 et al., 2005).
Thus, given the paucity 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 role functioning are available from the geriatric literature and include the Kingston Caregiver Stress Scale (Hopkins, Killik, & Day, 2007), the Modified Caregiver Strain Index (Thornton & Travis, 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, 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, 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 or family member (Carnevale et al., 2002; Ergh, Rapport, Coleman, & 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 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 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 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 most of the cross-sectional designs, in some cases, from a few months to up to 30 or 40 years postinjury (Katz 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 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 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 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 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 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 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 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 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 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 that enrolls families near the time of injury and includes an assessment of preinjury functioning as a baseline 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 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, 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 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, 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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