Family Burden After Traumatic Brain Injury in Children

Department of Pediatrics, University of Arkansas for Medical Sciences College of Medicine, Arkansas Children's Hospital Research Institute, Little Rock, Arkansas, USA.
PEDIATRICS (Impact Factor: 5.47). 02/2009; 123(1):199-206. DOI: 10.1542/peds.2008-0607
Source: PubMed


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.
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.
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.
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.

Download full-text


Available from: Kenneth M Jaffe,
    • "Studies have reported poorer general health, with symptoms including fatigue (Brehaut et al., 2004; Chien et al., 2003; Davis et al., 2010; Murphy et al., 2007; Skalla, Smith, Zhongze, & Gates, 2013) and poor quality of sleep (James et al., 2002; Meltzer & Mindell, 2006; Skalla et al., 2013; Yamazaki, Sokejima, Mizoue, Eboshida, & Fukuhara, 2005). Caregivers also can experience emotional , psychological, and psychosocial effects (Aitken et al., 2009; Brehaut et al., 2004; Chien et al., 2003; Hatzmann, Heymans, Ferrer-i-Carbonell, Van Praag, & Grootenhuis, 2008; James et al., 2002; Klassen et al., 2008; Yamazaki et al., 2005), which decreases their perceived ability to provide care (Cooper, Robertson, & Livingston, 2003; Driscoll, Montag-Leifling, Acton, & Modi, 2009; Iwamoto, dos Santos, Skare, & Spelling, 2008; Raina et al., 2005; Reiter-Purtill et al., 2008). In addition, caregivers often cannot be employed, pursue their own careers (Cadell et al., 2012; Fletcher, 2010), or maintain social relationships (Davis et al., 2010). "
    [Show abstract] [Hide abstract]
    ABSTRACT: To examine the daily maternal caregiving demands for adolescent and young adult survivors of pediatric brain tumors who live with their families. . A secondary analysis was conducted on interview data gathered during a large mixed-methods study that focused on perceived maternal caregiver competency and survivor health-related quality of life. . Home interviews. . A purposive sample of 46 maternal caregivers was selected from participants in the larger study. . Semistructured interviews were conducted with mothers. A directed content analysis was informed by Sullivan-Bolyai's framework describing the components of primary caregiving. . Caregiving demands. . Data regarding four main categories of maternal daily caregiving demands were identified from 25 of the 46 interviews. Potential day-to-day management tasks or demands of mothers of adolescent and young adult survivors of pediatric brain tumors were identified. . The major demands of caregiving are similar to those for children with other chronic conditions, with the addition of assisting with everyday responsibilities and fostering psychosocial health. .
    Oncology Nursing Forum 05/2015; 42(3):222-9. DOI:10.1188/15.ONF.222-229 · 2.79 Impact Factor
  • Source
    • "Aitken et al. showed differences of physical health summary scores in the Children Health Questionnaires (CHQ) between the injured children and the norm which persisted 6 months after traumatism(Aitken et al. 2002). Nevertheless, the majority of studies targeted children with traumatic brain injuries (TBI) and evaluated their consequences on the child and his family (Max et al. 1998, Waters et al. 2001, Anderson et al. 2005b, Aitken et al. 2009). "
    [Show abstract] [Hide abstract]
    ABSTRACT: Despite the frequency of traumatic injuries due to road accidents and potential importance of identifying children at risk of impaired recovery one year after a road accident, there is a lack of data on long-term recovery of health status, except in children with severe traumatic brain injury. The aim of the present study was to evaluate predictive factors of recovery in children one year after road traffic injuries. The prospective cohort study was composed of children aged <16 years, admitted to public or private sector hospitals in the Rhône administrative area of France following a road accident. Recovery of health status one year after the accident and information concerning quality of life and the consequences of the accident for the child or family 1 year after the accident were collected by questionnaire, usually completed by the parents. Victims were in majority male (64.6%) and had mild or moderate injuries (81.9% with Maximum Abbreviated Injury Scale (M-AIS) <3). One year after the accident, 75.0% of the mild-to-moderate and 34.8% of the severe cases estimated health status as fully recovered. After adjustment, severity score (M-AIS≥3) and lower limb injury (AIS>1) were associated with incomplete recovery of health status: weighted odds ratio (ORw), 4.3 [95% confidence interval (95% CI), 1.3-14.6] and ORw, 6.5 [95% CI, 1.9-21.7], respectively. Recovery status correlated significantly with quality of life physical scores (r=0.46), especially body pain (r=0.48) and role/social-physical (r=0.50) and, to a lesser extent, quality of life psychosocial scores (r=0.21). In a cohort of children injured in a road accident, those with high injury severity score and those with lower limb injuries are less likely to recover full health status by 1 year. Impaired health status was associated with a lower physical quality of life score at 1 year.
    Accident Analysis & Prevention 06/2014; 71C:267-272. DOI:10.1016/j.aap.2014.06.001 · 1.87 Impact Factor
  • Source
    • "Traumatic brain injury (TBI) affects nearly half a million children each year in the United States (Langlois et al., 2005) and is a leading cause of pediatric death and disability (Langlois et al., 2006). Survivors of pediatric TBI are at increased risk for prolonged, even life-long, and neurologic impairments (Yeates et al., 2002; Yeates et al., 2005) (Anderson et al., 2012) (Anderson et al., 2005b) (Aitken et al., 2009). Despite the significant burden imposed by pediatric TBI on individuals and society, clinical therapies to directly improve neurologic outcome after pediatric TBI are lacking. "
    [Show abstract] [Hide abstract]
    ABSTRACT: After traumatic brain injury (TBI), proteolysis of Alpha II Spectrin by Calpain 1 produces 145 SBDPs (Spectrin Breakdown Products) while proteolysis by Caspase 3 produces 120 SBDPs. 145 and 120 SBDP immunoblotting reflects the relative importance of caspase-dependent apoptosis or calpain-dependent excitotoxic/necrotoxic cell death in brain regions over time. In the adult rat, controlled cortical impact (CCI) increased 120 SBDPs in the first hours, lasting a few days, and increased 145 SBDPs within the first few days lasting up to 14 days after injury. Little is known about SBDPs in the immature brain after TBI. Since development affects susceptibility to apoptosis after TBI, we hypothesized that CCI would increase 145 and 120 SBDPs in the immature rat brain relative to SHAM during the first 3 and 5 days, respectively. SBDPs were measured in hippocampi and cortices at post injury days (PID) 1, 2, 3, 5, 7 and 14 after CCI or SHAM surgery in the 17 day old Sprague Dawley rat. 145 SBDPs increased in both brain tissues ipsilateral to injury during the first 3 days, while changes in contralateral tissues were limited to PID2 cortex. 145 SBDPs elevations were more marked and enduring in hippocampus than in cortex. Against expectations, 120 SBDPs only increased in PID1 hippocampus and PID2 cortex. 145 SBDPs elevations occurred early after CCI, similar to previous studies in the adult rat, but resolved more quickly. The minimal changes in 120 SBDPs suggest that calpain-dependent, but not caspase-dependent, cell death predominates in the 17 day old rat after CCI.
    Brain Research 06/2014; 1574(1). DOI:10.1016/j.brainres.2014.05.046 · 2.84 Impact Factor
Show more