PEDIATRICS Vol. 123 No. 1 January 2009, pp. 199-206 (doi:10.1542/peds.2008-0607)
ARTICLE |
Family Burden After Traumatic Brain Injury in Children
a Department of Pediatrics, University of Arkansas for Medical Sciences College of Medicine, Arkansas Children's Hospital Research Institute, Little Rock, Arkansas
Departments of b Emergency Medicine
d Psychiatry
j Physical Medicine and Rehabilitation and Pediatrics, Johns Hopkins University School of Medicine, Baltimore, Maryland
c Department of Neuropsychology
i Pediatric Rehabilitation Medicine, Kennedy Krieger Institute, Baltimore, Maryland
e Department of Pediatrics, University of Pennsylvania School of Medicine, Philadelphia, Pennsylvania
f Departments of Rehabilitation Medicine and Pediatrics
h Division of Rehabilitation Psychology, Children's Hospital and Regional Medical Center, University of Washington School of Medicine, Seattle, Washington
g Department of Surgery, University of South Florida, Tampa, Florida
k Center for Injury Research and Policy, Johns Hopkins Bloomberg School of Public Health, Johns Hopkins University, Baltimore, Maryland
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ABSTRACT |
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 TOP ABSTRACT METHODSRESULTSDISCUSSIONCONCLUSIONSREFERENCES |
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OBJECTIVE. Traumatic brain injury has a substantial impact on caregivers. This study describes the burden experienced by caregivers of children with traumatic brain injury and examines the relationship between child functioning and family burden during the first year after injury.
PATIENTS AND METHODS. Children aged 5 to 15 years hospitalized for traumatic brain injury at 4 participating trauma centers were eligible. Caregivers completed baseline and 3- and 12-month telephone interviews measuring the child's health-related quality of life using the Pediatric Quality of Life Inventory. The emotional impact scale of the Child Health Questionnaire was used to identify caregivers with substantial distress, including general worry or interference with family routine. Caregiver perceptions of whether health care needs were met or unmet and days missed from work were also measured.
RESULTS. A total of 330 subjects enrolled; follow-up was conducted with 312 at 3 months and 288 at 12 months. Most subjects were white (68%) and male (69%). Abnormal Pediatric Quality of Life Inventory subscores were related to substantial caregiver burden (either general worry or interference in routine). These abnormalities were reported by >75% of patients at 3 months and persisted to 1 year in some patients. Parental perception of unmet health care needs was strongly related to family burden outcomes, with up to 69% of this subset of parents reporting substantial worry, and nearly one quarter reporting interference with daily routine/concentration 1 year after injury. Child dysfunction predicted parental burden at 3 and 12 months. Burden was greater when health care need was unmet. Abnormalities on the Pediatric Quality of Life Inventory predicted the amount of work missed by parents, especially in the presence of unmet needs.
CONCLUSIONS. Caregivers are more likely to report family burden problems when child functioning is poorer and health care needs are unmet. Improved identification and provision of services is a potentially modifiable factor that may decrease family burden after pediatric traumatic brain injury.
Key Words: traumatic brain injury • health-related quality of life • PedsQL • family burden
Abbreviations: TBI—traumatic brain injury • CHAT—Children's Health After Trauma • AIS—Abbreviated Injury Scale • EIS—emotional impact scale • PedsQL—Pediatric Quality of Life Inventory • NISS—New Injury Severity Score • OR—odds ratio • CI—confidence interval • HRQoL—health-related quality of life
Each year, 
626000 children between the ages of 0 and 19 years sustain a nonfatal traumatic brain injury (TBI) that requires hospitalization or emergency department treatment.1 Numerous studies show that a moderate to severe TBI negatively impacts physical, emotional, and behavioral dimensions of child health. These outcomes may be influenced by independent, preexisting family factors, including socioeconomic status, family functioning, and psychosocial stressors.2–7
There is also growing evidence that TBI can cause substantial caregiver burden as evidenced by family stress and disorganization,8–11 mental health problems,12 and unmet need for health care/social services.13,14 Rivara et al15 noted higher levels of caregiver burden among families of children with behavioral and functional problems at 3 years post TBI. Wade and colleagues9,16 found that parents of children with severe TBI reported higher burden than those of children with moderate TBI or orthopedic injury. Higher injury-related burden persisted for the caregivers of children with moderate/severe TBI up to 6 years after injury.10
The relationship between TBI and caregiver burden is important to understand because caregiver burden can impact the child's recovery. Taylor et al4 found that among children with severe TBI, only those from less stressed families recovered their math skills by 4 years after injury. The cohort studies cited above show a strong relationship between injury severity and caregiver burden. However, injury severity cannot be altered once the injury occurs. Therefore, the purpose of this study is to explore the relationship between caregiver burden and potentially modifiable factors, specifically children's health and health care needs. We hypothesized that caregiver burden would be lower among children with better reported function and fewer unmet health care needs.
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METHODS |
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The Children's Health After Trauma (CHAT) study was designed to measure children's general health outcomes during the first year after TBI. Detailed information regarding the CHAT's study design can be found elsewhere6,17; only a brief summary follows.
Study Population
Children 5 to 15 years of age who were hospitalized at 4 pediatric trauma centers for treatment of TBI with an Abbreviated Injury Scale (AIS) score of 
2 were eligible for the CHAT. Children were excluded if they or their parents were non–English-speaking; they had a preexisting medical condition that seriously impacted preinjury function; or they were a suspected child abuse case.
Procedures
The institutional review boards of all participating sites approved the study. Between January 15, 2002, and July 31, 2003, 420 children met the study inclusion and exclusion criteria and 330 families (79%) enrolled. Participants agreed to complete 3 telephone interviews over a 1-year period and to allow abstraction of injury/ treatment information from the child's medical chart. Telephone interviews were completed by the child's primary caregiver. The baseline interview, conducted within 3 weeks of the initial hospitalization (median: 16 days), collected background information on the child, his/her family, and the child's preinjury function. The follow-up interviews, administered 3 and 12 months after injury, assessed the impact of the injury(s) on the child's health and family.
Measurement
The main outcome for this analysis, caregiver burden, was measured in 3 ways. First, at each follow-up interview, the primary caregiver completed the emotional impact scale (EIS) of the Child Health Questionnaire.18 This scale consists of 5 questions measuring the distress experienced by the primary caregiver because of the child's physical health, behavior, emotional health, attention or learning abilities, and ability to get along with others. The amount of distress is rated along a 5 level scale ranging from none at all to a lot. A briefer version (3 items) of the EIS demonstrated moderately (
= .70) high internal consistency reliability in a large US population-based sample.18 In this study sample (5 item version), the internal consistency reliability of the EIS was good ( = .87), and the item to scale correlations ranged from .58 to .79. The intracorrelations among the 5 items ranged between .36 and .69.
Second, caregiver burden was evaluated by measuring the impact of the child's health on the primary caregiver's everyday activities. The caregiver was asked how often their child's health interfered with their daily routine and ability to concentrate. The extent of interference for these 2 items was also rated along a 5-level continuum from never to almost always. In this study sample, the intracorrelation coefficient between the 2 items was .59 three months and .65 twelve months after injury. Third, caregiver ability to work was assessed. Respondents that were employed were asked to report how many days he/she had missed work because of the child's health.
Child and family characteristics that we hypothesized may influence caregiver burden were also measured. We used the Pediatric Quality of Life Inventory (PedsQL) to characterize children's function. The PedsQL is a generic health status instrument consisting of 23 questions evaluating 4 domains of function: (1) physical; (2) emotional; (3) social; and (4) school.19,20 All PedsQL scales have a possible range from 0 (poor) to 100 (excellent health). Scale scores that fall 1 or more SDs below the means obtained from a healthy sample of children are considered impaired.21,22 The PedsQL was rigorously developed and has demonstrated good reliability and validity in numerous clinical samples.23–27 In this study sample, we previously reported good internal consistency reliability (range: 0.74–0.93), test–retest reliability (range: 0.75–0.90) and discriminant validity of the PedsQL scales.17
Other characteristics that were measured at baseline included the child's age, race, health insurance coverage, and the presence of preexisting physical or psychosocial health conditions. We also obtained information about the primary caregiver during the baseline interview. We determined the respondent's age, race, marital status, education, household income, and relationship to the child. At baseline, respondents also completed the general functioning scale of the Family Assessment Device, which measures overall family functioning.28,29 The scale has a possible range of 1 to 4, and scores of 2 reflect poor family functioning. Finally, caregiver perception of whether health care needs were met was obtained at both 3 and 12 months. Caregivers were asked whether there were any health care or educational services that the child needed but did not receive since the last interview. This assessment, when used in conjunction with measures of function, has demonstrated utility in identifying families with both unmet and unrecognized health care needs.7
Injury and treatment information were abstracted from the subject's medical chart. All injuries were characterized according to the AIS.30,31 The AIS classifies the severity of each injury according to its associated threat to life on an ordinal scale from 1 (minor) to 6 (unsurvivable). Overall injury severity was calculated the New Injury Severity Score (NISS). The NISS is the sum of the squares of the 3 most severe AIS injuries sustained.32 The NISS ranges from 0 to 75; higher scores reflect greater severity. Finally, the mechanism of injury, hospital length of stay, and disposition were also recorded on all subjects.
Data Analysis
First, we characterized the study sample by comparing those who completed the follow-up interviews with those who did not. Second, we examined the relationship between the child's function and caregiver burden. To do this, we dichotomized the amount of emotional distress and the impact of the child's injury on the caregiver's daily routine and concentration as substantial or not. Caregivers who reported "quite a bit" or "a lot" of emotional concern for any of the 5 questions included in the EIS were characterized as reporting substantial overall distress or general worry. Similarly, caregivers who reported that the child's injury interfered with their daily routine or ability to concentrate "often" or "almost always" were characterized as reporting substantial interference. Dysfunction was defined as a PedsQL scale score >1 SD below population norms and severe dysfunction if greater than or equal to 2 SDs below norms. For the bivariate analyses, a 
2 test was used, and test statistics associated with a P 
.05 were considered statistically significant.
Third, we conducted a multivariate logistic regression analysis and modeled caregiver burden separately 3 and 12 months after injury as a function of the child's function (using the 4 core PedsQL scales as continuous variables), along with child (age, gender, race, insurance status, presence of a preexisting physical condition, presence of a preexisting emotional/cognitive condition), respondent (age, gender, relationship to child, marital status, and education), and family (household income, family functioning, unmet need) characteristics. The odds ratios (ORs) and 95% confidence intervals (CIs) of variables that were significant were kept and are displayed in the final models. Although type and severity of the injury are predictive of family burden, they are highly correlated with children's function or PedsQL scores. Thus, we did not include injury severity in our regression models. Finally, for those working before injury, we calculated the mean difference in workdays missed in the past month because of the child's injury compared with before the injury and compared the means by children's function and perceived unmet need using analysis of variance.
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RESULTS |
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TOPABSTRACTMETHODSRESULTSDISCUSSIONCONCLUSIONSREFERENCES |
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We identified 438 eligible children for the study, 381 consented (87%) and we successfully enrolled 330 (75%). Children who did not enroll were more likely to lack health insurance (10%) compared with those who enrolled (<1%; P < .05). Of the 330 patients with TBI who enrolled, 302 (92%) completed the 3-month interview, and 288 (87%) completed the 12-month interview. Twenty subjects (5%) did not complete either follow-up interview. Subjects with no follow-up were more likely to be younger, nonwhite, and part of a single-parent household compared with those with follow-up (P < .05).
Table 1 summarizes the characteristics of the study sample. Approximately two thirds of the study sample was white males (68%). Almost three quarters of subjects were covered by private health insurance. One in 4 children had a preexisting cognitive or emotional health condition, such as an attentional problem, and 37% reported a preexisting physical condition. Most primary caregivers were parents (94%) who were married or living with a partner (64%). Relatively few respondents reported poor family functioning before the child's injury (15%).
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Table 1 also includes information about the relationship between the 2 main outcome measures and patient, family, and injury characteristics at 3 months after injury. Parents of children with preexisting conditions reported higher levels of burden than those without. Significantly higher proportions of families with more severe TBI (according to AIS) and overall injury (according to NISS) reported interference with routine. In addition, unmet need was related to significantly higher reporting of both interference (41%) and general worry (84%).
The relationship between the report of substantial family burden and the child's physical, psychosocial, and cognitive function as measured by the PedsQL at 3 and 12 months are displayed in Table 2. Relevant PedsQL domains map fairly well to parental reports of worries in particular areas, especially at 12 months after injury. For example, parents of children with significant physical dysfunction were more likely to report worry about their child's physical health. Likewise, a greater proportion of parents who worried about emotional and behavioral issues had children with psychosocial dysfunction. Table 2 also shows the burden decreases between 3 and 12 months after injury.
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Parental reports of substantial interference with daily routine or concentration were common in this population and correlated well with decrements in PedsQL scores (see Table 2). Interference was reported by 66% of caregivers of children with severe physical dysfunction, 59% of those with severe psychosocial dysfunction, and 38% of those with severe cognitive problems at 3 months. Substantial interference was less problematic at 12 months but was still reported in more than a third of children with severe physical problems and more than a quarter of those with severe psychosocial dysfunction.
General worry among caregivers was common and increased across all functional domains as the level of dysfunction increased. At 3 months, 85% of caregivers of children with severe physical dysfunction, 90% of those with severe psychosocial dysfunction, and 76% of those with severe cognitive problems reported substantial worry. Even at 12 months, the vast majority of caregivers of children with severe physical, psychological, or cognitive problems remained worried. Of note, among children with severe physical problems, the proportion of caregivers reporting substantial worry was slightly higher at 12 months than at 3 months (91% vs 85%).
Caregivers' perceptions of whether their health care needs were met were also related to family burden (Table 3). Families who perceived their needs as met were less likely at both 3 and 12 months to report any of the family burden outcomes. For example, 3 months after injury, families with met need reported interference with routine half as frequently as those with unmet need (24% vs 41%). Even after 1 year, 69% of the caregivers with unmet need reported general worry, and nearly one quarter continued to report substantial interference with their daily routine/concentration.
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Table 4 presents the likelihood of a caregiver reporting substantial interference or general worry 3 and 12 months after injury as a result of the child's function controlling for other demographic and family factors that were significant. For example, a 10 unit increase in the PedsQL physical function score 3 months after injury was associated with a 30% reduction (OR: 0.70 [95% CI: 0.60–0.82]) in the likelihood of caregivers reporting substantial interference with daily routine/concentration 3 months after injury. A 10-unit improvement in emotional functioning was associated with a reduced likelihood of parents reporting substantial interference in daily routine/concentration or general worry at 3 and 12 months after injury. Better social functioning was associated with less family burden at 12 months after injury only. Improvement in school function was significantly related to reduction in general worry at both 3 months (OR: 0.74 [95%: CI 0.62–0.89]) and 12 months (OR: 0.63 [95% CI: 0.51–0.78]) after injury.
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Families with unmet health care needs were also significantly more likely to report interference with daily routine/concentration and general worry about their children (see Table 4). The only child or family characteristic that significantly impacted family burden was caregiver education. Respondents who had attended college were >4 times more likely (OR: 4.53 [95% CI: 1.38–14.90]) to report substantial interference with daily routine/concentration compared with those who had not at 12 months after injury.
Finally, as shown in Table 5, at both 3 and 12 months after injury, caregivers of children with significantly lower PedsQL total scores missed more work than did those who had normal function on the PedsQL (3 months: 11.9 vs 4.4 days; 12 months: 3.4 vs 0.6 days). Perception of unmet need was also related to missed work, with parents expressing unmet needs having more than twice as many missed days of work at both 3 and 12 months.
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DISCUSSION |
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TOPABSTRACTMETHODSRESULTSDISCUSSIONCONCLUSIONSREFERENCES |
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Our study supports a growing literature that suggests a strong association between TBI and caregiver burden. Our study used an easily applied measure of health-related quality of life (HRQoL) to identify areas of child functioning that are associated with family burden. Because some of these areas of function are modifiable through increased access to medical care, education, or other services, this new information can help frame potential screening mechanisms, educational interventions, and improvements in clinical practice. The identification of caregivers who are experiencing higher levels of stress is important not only for the long-term health and recovery of the child but also for the caregivers' well-being. Our results shed light on the reasons families report increased burden and illustrate the utility of simple measures like the PedsQL. The decrease in burden over time is consistent with Wade's 2006 study.10 These results suggest that although some problems resolve spontaneously, there are a significant number of families who continue to experience a high rate of burden 1 year after injury.
Families in our study sample reported substantial general worry, along with specific concerns about children's physical, emotional health, and attentional/ learning problems that correlated well with measured deficits in relevant HRQoL domains. Measured decrements in emotional and social functioning were related to interference and worry, whereas physical function, at least at 1 year, was less of an issue. Thus, measurement of HRQoL with self-administered, brief instruments like the PedsQL may be a valuable means of identifying families at risk for increased burden, as well as to track the overall recovery of injured children.7
The pattern of burden demonstrated by these families is of interest, because in many cases the families reporting the most trouble were not only those with children with the most challenging physical hardship but those with psychosocial dysfunction. Our multivariate model demonstrated that problems in emotional and social functioning led to more pronounced and persistent parental worry and interference at a year. Thus, physicians caring for injured children need to be aware that the problems most associated with family burden may not be the most visible during follow-up. In addition, pediatricians may have better training and experience dealing with physical rather than emotional or social dysfunction, making these issues even more difficult for them to recognize and manage. These data support the need for routine and standardized screening for problems in these areas over time, as well as the development of referral systems to use for family oriented therapy or case management when problems are identified. In addition, many children with TBI and behavioral or social problems require mental health services that are not covered fully or at all under many insurance plans. The challenges associated with lack of access to mental health benefits may contribute to increased burden for these families.
Improving the identification of families who are not receiving recommended follow-up or who are experiencing problems that require additional services is a key modifiable factor for this population. Our findings clearly indicated that parents who perceived that the health care needs of their children were not being met were more likely to report family burden both early in recovery and at a year. The appropriate mechanisms for meeting these needs are likely to be highly variable. For some, financial and insurance barriers are likely major issues. Lack of insurance and poor insurance coverage for rehabilitation care have been identified as risk factors for poorer outcomes. Slomine et al7 examined insurance status and unmet need and found that children covered by public insurance were twice as likely to have unmet needs at a year than those with commercial insurance. Ensuring access to insurance coverage, including behavioral health care, may therefore close some gaps and reduce stress.
Many families report struggles with work and finances, and these have been shown to be significant stressors for families of injured children.33 In our study, child dysfunction and unmet need was associated with loss of work in caregivers both at 3 and 12 months after injury. The amount of time needed for appointments, travel expenses to clinics and hospitals, and scheduling difficulties add to families' stress and burden.14 Working with families to minimize the impact on work schedules when making follow-up appointments, providing clear lines of communication and easier scheduling processes, consolidating follow-up visits with multiple specialists, and making local resources available for ongoing therapies might help families greatly.
It has been shown that family function before and after injury can be predictive of outcome, so relieving family burden where possible is important in a number of ways. Families in other studies of TBI note problems with communication and problem-solving during the recovery of their injured children. Although some problems cannot be avoided, coping resources in a number of forms have been hypothesized as mechanisms to assist families. Support groups and education have demonstrated some promise for these families, and recent studies have shown that computer-based resources and problem-solving interventions may have significant benefit in reducing problems in child behavior and global stress within the family.34–37
The strong association with higher educational attainment and burden deserves additional consideration and study. Possibly, professional parents experience problems with lack of flexibility in employment settings, or have different perceptions about the impact of TBI on the future educational attainment of the affected children. Additional analysis of the interaction between parental education, income, insurance status, and expectations is required.
Several limitations to this study must be acknowledged. First, the measures of HRQoL were obtained from the parent/caregiver's perspective, and it will be important to assess the child's perspective in additional studies. Our study did not use any objective measures to corroborate the health of these children, such as neuropsychological testing or physiologic measures. However, a previous study by the authors demonstrated that the PedsQL demonstrates good reliability and validity when applied to pediatric TBI patients.17 Also, because some studies have also found that caregiver mental and physical health can impact the way they perceive their children's health and the way they use health care services,38–41 it may be important to additional explore these influences. In this study, however, no specific measures of parental mental or physical health, either before or after the child's injury, were used. Parents reporting interference in routine or concentration might be manifesting a variety of conditions, including depression or posttraumatic stress disorder, but we were unable to address this in the current study. Additional exploration of these issues is clearly merited. Our study also did not assess preinjury family burden, so we were unable to determine how much of the family burden reported after injury was new versus preexisting. In addition, those with more severe TBI and those without health insurance were less likely to participate in the study. Therefore, our results may underestimate the extent of family burden associated with pediatric TBI.
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CONCLUSIONS |
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TOPABSTRACTMETHODSRESULTSDISCUSSIONCONCLUSIONSREFERENCES |
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Our study demonstrates a strong association between caregiver burden and children's function after a TBI. Caregiver burden was also more prevalent among parents with perceived unmet health care needs. Improved identification and provision of services to the families is a potentially modifiable factor that may decrease family burden and improve children's recovery after TBI.
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ACKNOWLEDGMENTS |
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This study was funded by grant R49/CCR319701 from the National Center for Injury Prevention and Control of the Centers for Disease Control and Prevention. Dr Aitken's research is also supported by grant RR020146 from the National Center for Research Resources, a component of the National Institutes of Health.
The CHAT Study Group consisted of the following individuals: Melissa McCarthy, ScD; Ellen MacKenzie, PhD; Dennis Durbin, MD, MS; Charles Paidas, MD; Mary Aitken, MD, MPH; Kenneth M. Jaffe, MD; Beth Slomine, PhD; Andrea Dorsch, PhD; James Christensen, MD; Ronald Berk, PhD; Eileen Houseknecht, RN, BSN; Susan Ziegfeld MSN, CRNP; Vinita Misra Knight, MPH, CSTR; Patricia Korehbandi, MN, MS, CHES; Donna Parnell, RN, MNSc; and Pat Klotz, RN, BSN.
We express our appreciation to the study coordinators who worked hard to successfully recruit of all of the injured children and families involved: Eileen Houseknecht, RN, BSN; Patricia Klotz, RN, BSN; Patricia Korehbandi, RN, MS, CHES; Vinita Misra Knight, MPH, CSTR; Donna Parnell, RN, MNSc; and Susan Ziegfeld, MSN, CRNP.
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FOOTNOTES |
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Accepted Apr 23, 2008.
Address correspondence to Mary E. Aitken, MD, MPH, UAMS College of Medicine, Department of Pediatrics, 800 Marshall St, Slot 512-26, Little Rock, AR 72202-3591. E-mail: aitkenmarye{at}uams.edu
The authors have indicated they have no financial relationships relevant to this article to disclose.
The views in this article are those of the authors and do not necessarily represent the views of the Centers for Disease Control and Prevention, National Center for Research Resources, or National Institutes of Health.
| What's Known on This Subject Many children experience long-term health issues after TBI, and parental burden can be substantial. The relationship between injury severity and caregiver burden is well described, but severity is not modifiable after the injury occurs. We explore caregiver burden's relationship to modifiable factors.
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| What This Study Adds Our study demonstrates a strong association between caregiver burden and children's function after TBI. Caregiver burden was also more prevalent among parents with perceived unmet healthcare needs. Improved identification and provision of services to the families is a potentially modifiable factor that may decrease family burden and improve children's recovery after TBI.
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