Journal of Pediatric Psychology, Vol. 27, No. 4, 2002, pp. 393-403
© 2002 Society of Pediatric Psychology
Race as a Moderator of Parent and Family Outcomes Following Pediatric Traumatic Brain Injury
1 The Ohio State University and Columbus Children's Hospital, 2 Case Western Reserve University and Rainbow Babies and Children's Hospital, 3 Indianapolis University-Purdue University Indianapolis, 4 University of Cincinnati and Children's Hospital Medical Center, 5 MetroHealth Medical Center
All correspondence should be sent to Keith Owen Yeates, Department of Psychology, Children's Hospital, 700 Children's Dr., Columbus, Ohio 43205. E-mail: yeates.1{at}osu.edu .
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Abstract |
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Objective: To use data from a prospective, longitudinal study to determine whether race moderates parent and family outcomes during the first year following pediatric traumatic brain injuries (TBI).
Method: Participants included 73 white and 18 black children with moderate to severe TBI and their families, and 32 white and 23 black children with orthopedic injuries only (OI) and their families. Assessments of parent and family functioning occurred shortly after injury (baseline) and at 6- and 12-month follow-ups.
Results: Race was a significant moderator of group differences in parental psychological distress and perceived family burden, by and large independent of socioeconomic status. The negative consequences of TBI were relatively less pronounced for parents of black children than for parents of white children at baseline, but became more pronounced at the two follow-ups. Black and white parents differed in preferred coping strategies, which may partially account for their different reactions to their children's injuries.
Conclusions: The sociocultural factors associated with race may moderate the effects of pediatric TBI and OI on parents and families.
Key words: traumatic brain injury; children; race.
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Introduction |
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Traumatic brain injury (TBI) is a major source of mortality and morbidity for children and adolescents. Trauma is the leading cause of death among individuals 14 years of age and younger, and nearly half of those fatalities involve brain injury (Kraus, 1995
). Among survivors, severe TBI results in decrements in
intellectual functioning, language, nonverbal skills, attention, memory, and
executive functions (Yeates,
2000). TBI also can result in a variety of emotional and
behavioral problems (Taylor et al.,
1999; Yeates et al.,
2001), as well as declines in academic achievement, school
performance, and adaptive functioning
(Taylor et al., 1999).
TBI can have devastating consequences not only for children but also for
their families. Recent studies have shown that severe pediatric TBI results in
significant distress and burden for parents and families. The negative
outcomes have been documented in comparisons to families of uninjured children
and to families of children with injuries not involving the brain
(Rivara et al., 1996;
Taylor et al., 1999;
Wade, Taylor, Drotar, Stancin, &
Yeates, 1998).
The consequences of pediatric TBI for parents and families appear to depend
in part on children's outcomes, which in turn are influenced by parent and
family functioning (Taylor et al.,
1999,
2001;
Yeates et al., 1997). Parent
and family outcomes after pediatric TBI also are moderated by psychosocial
factors. For instance, caregiver coping styles moderate parent and family
functioning following TBI. A reliance on avoidant strategies such as denial
exacerbates parental distress and perceived family burden, whereas the use of
emotion-focused strategies such as acceptance promotes more positive outcomes
(Wade et al., 2001).
Race or ethnic minority status is another social factor that could moderate
parent and family outcomes following pediatric TBI. Race is a complex social
construct that involves the classification of individuals and groups based on
externally visible physical characteristics. Racial classification is often a
means of assigning social position, including designation as an ethnic
minority (Coll et al., 1996).
Ethnic minorities are characterized by important sociocultural differences,
even when equated for factors such as education and income, and race can serve
as a proxy for those differences in research. A study of whether the parent
and family outcomes of pediatric TBI are moderated by race could provide the
grounds for a more detailed examination of how sociocultural differences among
ethnic groups affect responses to traumatic injuries. However, racial
differences in outcomes after pediatric TBI have not been studied before. For
instance, blacks constitute the largest ethnic minority in the United States,
but we could not find any previous studies comparing blacks and whites on
different parent and family outcomes following pediatric TBI.
There are several reasons to think that parents and families may respond
differently to pediatric TBI as a function of race. Blacks and whites differ
in general health perceptions and methods of coping with negative life events,
in ways not accounted for by differences in socioeconomic status (SES;
Kessler & Neighbors,
1986). Blacks are more likely than whites to assess their health
as poor, even when equated for income level
(Navarro, 1991;
Ren & Amick, 1996).
Similarly, black parents rate their children's health more poorly than white
parents, even when matched for SES, health needs, and access to care
(Weitzman, Byrd, & Auinger,
1999). Blacks also have been found to respond differently than
whites to negative life events. Among lower income samples, blacks report more
distress than whites in response to undesirable life events
(Kessler & Neighbors,
1986; Ulbrich, Warheit, &
Zimmerman, 1989) and are more likely to rely on religion when
coping with their distress (Neighbors,
Jackson, Bowman, & Gurin, 1983). Differences in health
perceptions and coping styles may lead black parents to respond differently to
TBI than white parents.
Racial differences in family distress and burden following TBI also could
occur because of structural barriers that prevent blacks from obtaining
quality health care. Blacks often experience decreased access to health care,
as well as inequality in medical treatment, as compared to whites
(Dressler, 1993). Black
children receive less continuity of care than white children, even when
equated for SES; they make fewer physician visits and are more likely to rely
on hospital emergency departments for medical care
(Weitzman et al., 1999).
Severe TBI typically necessitates ongoing medical care. In the face of
limitations in access to quality health care, black families may be more
likely than white families to experience negative outcomes after pediatric
TBI.
The specific aims of this study, therefore, were to determine whether race
moderates parent and family outcomes following pediatric TBI independently of
SES. We used data from a prospective, longitudinal study of the effects of
pediatric TBI on children and their families
(Taylor et al., 1995). We
anticipated that black parents would report relatively more psychological
distress and greater perceived family burden than white parents following
moderate to severe TBI, even when equated for SES. Finally, we predicted that
black parents would report different strategies for coping with traumatic
injuries than white parents. We examined coping strategies shown in our
previous research to predict parent and family outcomes
(Wade et al., 2001).
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Method |
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Sample
We recruited a total of 109 children with moderate to severe TBI and their families and 80 with orthopedic injuries only (OI) and their families for a longitudinal, prospective study of child and family outcomes following TBI. Participants were recruited from consecutive admissions to four hospitals in central and northeastern Ohio. All children were between 6 and 12 years of age at the time of injury and used English as their primary language at home. Children with a history of child abuse, previous neurological disorder, or mental retardation were excluded from the study. For this work, participants were also restricted to those whose primary caregivers designated them as white or black; eight children who were either of a different race or multiracial were excluded. Children were not excluded for premorbid learning disabilities, attention problems, or behavior disorders.
Of the 181 remaining families, 36 did not complete all three assessments
scheduled during the first year postinjury and were not included in this
study. The rate of participation in all three assessments was significantly
higher in the TBI group (87%) than in the OI group (71%, 
2 [1,
n = 181] = 6.75, p <.01). Participation varied by race in
the TBI group (whites = 91%, blacks = 72%) but not in the OI group (whites =
74%, blacks = 68%). Families who participated in all three assessments
demonstrated lower SES than those who did not. Among the TBI group, children
completing all three assessments had less severe injuries (i.e., higher
Glasgow Coma Scale [GCS] scores) than those who did not.
Children in the TBI group sustained a blunt head trauma resulting in a
moderate to severe TBI. They were eligible if their lowest postresuscitation
GCS (Teasdale & Jennett,
1974) score was 12 or less, or if the GCS score was between 13 and
15 but was associated with an intracranial lesion on neuro-imaging, skull
fracture, neurological deficit, or documented loss of consciousness for more
than 15 minutes. Children in the OI group sustained a non-cranial fracture
that required at least an overnight hospitalization but did not demonstrate
any loss of consciousness or other indication of TBI. The OI group was
selected to equate participants for the experience of a traumatic injury and
subsequent medical treatment and also to help control for premorbid
characteristics that increase a child's risk of traumatic injury, as well as
for practice effects due to repeated testing.
The sample for this study consisted of 145 of the original participants: 72
white and 18 black children with moderate to severe TBI and their families,
and 32 white and 23 black children with OI and their families.
Table I presents descriptive
information about the participants. The OI group had a higher proportion of
black children than the TBI group, (2 [1, n = 145] =
8.24, p <.01). The racial imbalance was likely a reflection of
emergency transport patterns at the hospitals rather than any bias in
recruitment. The TBI and OI groups did not differ on any other demographic
measures, including SES, as reflected in the Socioeconomic Composite Index
(SCI; Yeates & Taylor,
1997). The SCI was formed by averaging sample z scores
for the Duncan occupational status index
(Stevens & Featherman,
1981), annual family income as coded on the Life Stressors and
Social Resources Inventory (Moos, Fenn,
& Billings, 1988), and a 7-point maternal education scale. As
anticipated, the groups differed in injury severity. In
Table I, the injury severity
score (ISS; Mayer, Matlack, Johnson, &
Walker, 1980) reflects all injuries sustained, whereas the partial
ISS is calculated based only on injuries that do not involve the brain. The
TBI group had more severe injuries overall but did not differ from the OI
group in the severity of injuries not involving the brain.
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Procedure
The study was approved by the institutional review boards at all
participating institutions. All age-appropriate hospital admissions were
monitored for potential eligibility. When children meeting entry criteria were
medically stable, their parents or legal guardians were invited to participate
in the study. After providing informed consent, the children's primary
caregivers provided demographic information. They also provided retrospective
ratings of pre-injury family functioning and children's premorbid behavioral
adjustment. In almost all cases (90%), the biological mother was the primary
caregiver and respondent throughout the study. Arrangements were made during
the hospitalization for an initial, or baseline, postinjury assessment. During
baseline assessments, caregivers provided information regarding parent
adjustment and family stress and burden associated with the children's
injuries. Baseline assessment procedures were repeated approximately 6 and 12
months later.
Parent and Family Outcome Measures. Parent and family outcome
measures included the Brief Symptom Inventory (BSI;
Derogatis & Spencer, 1982),
the Family Burden of Injury Interview (FBII;
Burgess et al., 1999), the
Impact on Family Scale, Version G (IOF-G;
Stein & Jessop, 1985), and
the self-report version of the Family Assessment Device (FAD;
Byles, Byrne, Boyle, & Offord,
1988; Miller, Bishop, Epstein,
& Keitner, 1985). The measures have demonstrated satisfactory
reliability and validity in previous research
(Wade et al., 1998). The BSI
is a self-report checklist of psychological symptoms. Overall parent distress
on this measure was summarized using the General Severity Index. The FBII is a
structured interview in which parents are asked questions pertaining to
injury-related family burden (Wade et al.,
1998). The average stress level across items was used to summarize
family burden. The IOF-G assesses the global impact of child disability on the
family. The Total Negative Impact score served as a summary measure of family
burden. The FAD was employed to assess overall family dysfunction, using the
12-item General Functioning scale (FAD-GF). Parents were asked to rate
pre-injury family functioning on the FAD-GF at the baseline assessment, but
the baseline BSI, FBII, and IOF-G reflected concurrent, postinjury status, as
did all four measures at the 6- and 12-month follow-ups.
Limited information is available regarding ethnic and racial differences in
previous studies of the measures. The BSI normative sample included about 87%
whites and 12% blacks, but information about SES was not presented for either
racial group and no comparisons based on race were reported
(Derogatis & Spencer,
1982). The FBII was developed expressly for this project, and we
have not previously presented data on racial differences on it. A comparison
of Hispanic and non-Hispanic families with chronically ill children on the IOF
found significant differences in parent-reported burden, but not after
controlling for SES (Stein & Jessop,
1989). Family adjustment as measured by the FAD did not vary by
race in a study of the impact of traumatic injuries
(Ketchum, 2000).
Parent Coping Measure. Parent coping strategies were assessed using the COPE (Carver, Schierer, & Weintraub, 1989). The COPE is a self-report inventory that measures a variety of coping strategies within the broader dimensions of problem-focused, emotion-focused, and avoidant coping. We used the situational version of the COPE and asked parents specifically to rate how they dealt with the stress created by their children's injuries. The COPE generates scores on four problem-focused scales (active coping, seeking of social support for instrumental reasons, planning, suppression of competing activities), six emotion-focused scales (positive reinterpretation and growth, seeking of social support for emotional reasons, religion, acceptance, focus on and venting emotions, humor), and five avoidant scales (mental disengagement, behavior disengagement, denial, alcohol/drug use, restraint).
Previous studies of the COPE in different racial groups have found
inconsistent results. In a study of adolescents and adults with end-stage
renal disease who were candidates for kidney transplantation, blacks were more
likely than whites to use maladaptive coping strategies and less likely to use
adaptive coping (Greco, Brickman, &
Routh, 1996). In contrast, in a study of women with breast cancer,
the only racial differences on the COPE were in religious coping, which was
more common among blacks than whites
(Culver, Arena, Antoni, & Carver,
2001).
Data Analysis
Each measure was subjected to a group (TBI vs. OI) by race (black vs.
white) by time (three assessment occasions) repeated measures multivariate
analysis of covariance (MANCOVA). To control for SES, we included the SCI as a
covariate in all analyses. Analyses initially included interaction terms
involving the SCI, not only to test the assumptions underlying analysis of
covariance but also to determine if race and SES interacted as moderators of
outcomes. If the interactions involving group, race, and the SCI or group,
race, the SCI, and time were not significant, all interaction terms involving
the SCI were trimmed from the model and the analysis was repeated. Each
analysis included only families who had outcome data available at all relevant
occasions. The baseline assessment of the FAD provided a measure of pre-injury
status. Analyses of this measure included only the 6- and 12-month follow-up
data, with the baseline (i.e., pre-injury) score included as an additional
covariate.
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Results |
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Parent and Family Outcomes
The results of analyses involving parent and family outcomes are summarized in Table II. The interaction of group, race, and the SCI was significant for the IOF-G, F(1, 136) = 5.26, p <.05. Among families of higher social class, whites in the OI and TBI groups did not report differential burden, but blacks in the OI group reported a higher mean level of burden across the three assessments than those in the TBI group. Among families of lower social class, there was not a race by group interaction, and the mean level of burden reported across the three assessments was similar regardless of injury type or race.
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The interaction terms involving group, race, and the SCI were not significant for the remaining parent and family measures. When the interaction terms were trimmed from the models, the group by race by time interaction was significant for the BSI and FBII. The interactions followed a similar pattern, as illustrated in Figures 1 and 2. In general, differences between the OI and TBI groups were of lesser magnitude for parents of black children than for parents of white children at baseline, but of greater magnitude at the 6- and 12-month follow-ups. Blacks and whites provided similar ratings of distress and burden after TBI, but they differed in their ratings after OI, with blacks reporting more distress and burden than whites at baseline and less at the 6- and 12-month follow-ups.
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Table II shows that several other effects were significant for the parent and family measures. Higher SES as measured by the SCI was consistently associated with better parent and family functioning on the BSI, IOF-G, and FBII. The TBI group reported significantly more family stress and burden on the FBII than the OI group, and the difference in burden between the groups increased over time. On the IOF, the OI group reported more negative impact than the TBI group at the baseline assessment, whereas the reverse was true at the 6- and 12-month follow-ups, with more burden reported by the TBI group.
Parent Coping
Table III summarizes the
results of the analyses of parent coping. None of the interactions involving
group, race, and the SCI was significant. When interaction terms were trimmed,
the main effect of race was significant for several coping strategies. Blacks
reported more use of religion, denial, and mental disengagement than whites
and less use of acceptance (see Table
IV for estimated marginal means and standard errors on these
scales). The SCI also accounted for significant variance in several coping
strategies. Higher SES was associated with more use of active coping,
planning, seeking social support for instrumental reasons, and humor and less
use of behavioral disengagement and denial. Except for denial, the coping
strategies for which the SCI was a significant predictor were different from
those for which race was a significant predictor. The injury group main effect
was significant for active coping, with the TBI group reporting more use of
this strategy than the OI group.
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Discussion |
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The findings indicate that race was a significant moderator of parent and family outcomes. Differences between the OI and TBI groups in ratings of parent distress and family burden were of lesser magnitude for parents of black children than for parents of white children at baseline, but of greater magnitude at 6 and 12 months postinjury. This finding is consistent with our previous research showing that noninjury factors moderate the outcomes of pediatric TBI (Taylor et al., 1999
; Yeates et al.,
1997).
Differences between black and white families in their reactions to TBI by
and large occurred independent of SES, which was controlled in statistical
analyses. The only exception occurred on the IOF-G, on which group differences
varied as a function of race only for families of higher social class. The
reasons for this finding are unclear, and it may be spurious. In contrast, on
both the BSI and FBII, SES accounted for significant amounts of variance, but
race consistently moderated outcomes independent of SES. The independent
effects of race and SES identified in this study are consistent with previous
research showing that socioeconomic status alone cannot account for racial
differences in health perceptions
(Dressler, 1993;
Navarro, 1991;
Ulbrich et al., 1989).
A central issue left unresolved by this research is the mechanism by which
race moderates parent and family outcomes after pediatric TBI. Differences
between black and white parents in their reactions to traumatic injuries do
not occur because of skin color per se. Instead, they presumably occur because
of social and cultural differences for which race serves as a surrogate
marker. Our findings suggest that differences in coping strategies may be one
of the operative cultural factors. Black parents relied more on religion,
mental disengagement, and denial in coping with traumatic injuries.
Conversely, white families relied more on acceptance. Our previous research
(Wade et al., 2001) suggested
that avoidant strategies such as denial and disengagement consistently predict
poorer parent and family outcomes after pediatric TBI, whereas acceptance, an
emotion-focused strategy, predicts better outcomes.
Black and white parents reported different coping strategies independent of
SES. Moreover, SES generally was related to coping strategies different from
those related to race, accounting for differences in problem-focused
strategies such as active coping, seeking instrumental support, and planning.
These results are consistent with previous research showing that racial
differences in coping with distress exist independent of SES
(Neighbors et al., 1983). Our
findings suggest that socioeconomic factors are related to whether parents of
children with traumatic injuries will utilize coping strategies that emphasize
active problem solving, whereas cultural differences associated with race are
likely to be associated with whether parents rely on avoidant, as opposed to
emotion-focused, coping strategies after their children are injured. Notably,
the preference for active coping shown by parents of higher SES may not always
be adaptive; we previously found that active coping predicted more parent
distress after TBI but not OI (Wade et
al., 2001).
A variety of other social and cultural factors warrant future investigation
as possible reasons for racial differences in responses to traumatic injuries.
These include ethnic differences in health perceptions, knowledge of injury
sequelae, or expectations with regard to the impact of traumatic injuries.
Ethnic differences in access to health care, in the quality of health care
services, and in the willingness to seek those services also may help to
explain how race moderates parent and family outcomes
(Dressler, 1993;
Wethington & Kessler,
1986). Additional factors that may influence parent responses to
traumatic injury and that are likely to vary across ethnic groups include
family structure, community environment (e.g., urban vs. rural), employment
status, and the availability of health insurance.
Our study has several shortcomings. The number of black participants was
small, especially in the TBI group. The TBI and OI groups differed
significantly in the proportion of black participants, and attrition rates in
the TBI group varied by race. These differences between groups, as well as the
selective loss of families of lower SES across groups, suggest that the
generalizability of the findings to the population of children with traumatic
injuries may be limited because participants of lower SES were probably
underrepresented (Kraus,
1995). The differential attrition of more severely injured
children from the TBI group also is problematic, because it may have limited
the number of significant group differences in child and family outcomes and
hence reduced the likelihood of obtaining significant interactions with
race.
Thus, the findings warrant replication with larger and more diverse ethnic
groups. In future studies, the mechanisms by which ethnic minority status
moderates outcomes after TBI should be examined directly
(Coll et al., 1996). In the
meantime, the findings add to a growing literature regarding the
characteristics that place families at highest risk for negative outcomes
following pediatric TBI (Hu, Wesson,
Kenney, Chipman, & Spence, 1993). Future research is needed to
determine whether psychosocial interventions can reduce distress and burden in
at-risk families after pediatric TBI. One focus of intervention may be
parental coping strategies. Helping parents to accept the injury and to pursue
realistic goals for their children may reduce the distress and burden they
feel, but only if the assistance is provided in a culturally sensitive fashion
that reflects the complex influences of race, class, and poverty on families
(Boyd-Franklin, 1993). In this
regard, a better understanding of how social and cultural differences among
ethnic groups moderate parent and family outcomes may lead to improvements in
clinical management for all families following TBI.
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Acknowledgments |
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This research was supported by grant MCJ 390611 from the Maternal and Child Health Research Bureau (Title V, Social Security Act), Health Resources and Services Administration, Department of Health and Human Services, and by grant 5 RO1 NS36335 from the National Institute of Neurological Disorders and Stroke. We acknowledge the contributions of Matt Diamond, Marla Kemmerer, Nori Mercuri Minich, Madeline Polonia, Barbara Shapero, Elizabeth Shaver, and Nichole Wood. Special thanks also are due to the Rainbow Pediatric Trauma Center at Rainbow Babies and Children's Hospital, the Trauma Program at Children's Hospital of Columbus, and the Trauma Center at MetroHealth Medical Center. We also acknowledge the participation of the Children's Hospital Medical Center of Akron and the collaboration of Duane Bishop, Timothy Mapstone, Scott Maxwell, George Thompson, G. Dean Timmons, and Dennis Weiner.
Received February 1, 2001; revision received May 15, 2001; accepted November 17, 2001
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