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.

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Available from: Kenneth M Jaffe, Oct 13, 2015
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    • "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). "
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