Quality-of-life: Child and parent perspectives following severe traumatic brain injury

Souza, Ligia Maria Do N; Braga, Lúcia Willadino; Filho, Gilberto Nunes; Dellatolas, Georges

doi:10.1080/13638490600822239

Cited by 30 publications

(20 citation statements)

References 59 publications

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“…For example, children with TBI who showed impaired ability to learn on a test of memory (CVLT-C) during their acute rehabilitation were more likely to have persistent problems at 1 and 2 years postinjury and were more likely to require special education services [Miller and Donders, 2003]. This is an important finding, as other studies have shown that children who maintain average academic performance with respect to their peers rated themselves and were rated by their parents as having a higher quality of life 4 years after injury, regardless of their level of physical limitations [Souza et al, 2007]. Taylor et al [2001] demonstrated a bidirectional relationship in family and child difficulties over time after pediatric TBI.…”

Section: Postinjury Predictors Traumatic Brain Injurymentioning

confidence: 72%

Predictors of outcome following acquired brain injury in children

Johnson¹,

DeMatt²,

Salorio³

2009

Dev Disabil Res Revs

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Acquired brain injury (ABI) in children and adolescents can result from multiple causes, including trauma, central nervous system infections, noninfectious disorders (epilepsy, hypoxia/ischemia, genetic/metabolic disorders), tumors, and vascular abnormalities. Prediction of outcomes is important, to target interventions, allocate resources, provide education to family or caregivers, and begin appropriate planning for the future. Researchers have identified several factors associated with better or worse outcomes after ABI, including variables related to the injury itself, postinjury factors related to intervention or trajectory of recovery, and preinjury or demographic factors. When examining the scientific literature, it is important to identify how "outcome" is defined, as the predictors may change depending on the outcome studied. In addition, key variables may be specific to the etiology of injury. Therefore, predictors of outcome cannot be generalized across the various etiologies of ABI, and this review will discuss predictors within the context of multiple etiologies of ABI. This article reviews the current literature on predicting outcomes after pediatric ABI, and areas in need of further research are discussed.

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Section: Postinjury Predictors Traumatic Brain Injurymentioning

confidence: 72%

Predictors of outcome following acquired brain injury in children

Johnson¹,

DeMatt²,

Salorio³

2009

Dev Disabil Res Revs

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“…By including only youth who were able to self-report responses for the PedsQL, the sample is biased towards individuals with greater cognitive ability. Some may argue that proxy-report is preferable to excluding individuals unable to self-report, however, given the reported discrepancies between proxy-and self-reported HRQOL, particularly in the psychosocial dimensions of HRQOL (Souza, Braga, Filho, & Dellatolas, 2007;Vami et al, 2006), it seems timely to use self-report. Due to the lack of norms for youth in Australia without disabilities, results were compared to norms for youth in the United States.…”

Section: Discussionmentioning

confidence: 97%

Self-Reported Quality of Life in Adolescents with Cerebral Palsy

Maher

Olds

Williams

et al. 2008

Physical & Occupational Therapy In Pediatrics

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Health Related Quality of Life (HRQOL) is an important outcome in the delivery of health care. Research on the HRQOL in young people with cerebral palsy (CP) has relied on proxy-reports from parents. The purpose of this study was to investigate the self-reported HRQOL of young people with CP. A survey was mailed to 229 adolescents with CP in South Australia, of which 118 responded (51.5%). Seventy-one participants 11 to 17 years of age, self-reported HRQOL on the Pediatric Quality of Life Inventory 4.0 (PedsQL). Thirty-eight youth were deemed by their parent/guardian as having insufficient cognitive ability to self-report HRQOL and nine respondents returned their surveys incomplete. The mean PedsQL Physical Function score was 57.3 (SD = 24.3), the mean Psychosocial Function score was 64.5 (SD = 15.9), and the Overall PedsQL score was 62.0 (SD = 16.7). Compared to norms for children without disabilities, 67% of participants had an Overall PedsQL score greater than 1 SD below the mean. PedsQL scores were related to gross motor function classification level (Spearman's rho = -0.54), number of health issues (rho = -0.51), and socioeconomic status (rho = 0.28), but not age, gender, quality of sleep, or whether parent assistance was needed to complete the PedsQL. The results have implications for policy and efforts to identify and address barriers to full and satisfying participation in mainstream schools and community activities.

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“…Present findings suggest that post-ABI adjustment in everyday living requires supports across a wide range of areas, particularly in IADL and psychosocial functioning domains, with 75-100% of children across the age groups of the present sample requiring supports in at least one of these areas. In addition, childhood ABI has been found to negatively affect family (parental) stress levels [48] and quality of life [49,50]. Family factors such as cultural background may also interact with the types and levels of support required.…”

Section: Concurrent Validitymentioning

confidence: 95%