Determinants of participation of youth with acquired brain injury: A systematic review

Kloet, Arend J. de; Gijzen, Rianne; Braga, Lúcia Willadino; Meesters, J.; Schoones, Jan W.; Vlieland, Thea Vliet

doi:10.3109/02699052.2015.1034178

Cited by 38 publications

(45 citation statements)

References 57 publications

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“…These studies did find that the severity of ABI, motor, cognitive, behavior and sensory functioning was determinants of participation restrictions. [25][26][27] The possible mutual relationship between fatigue and participation remains unknown in AYAs with ABI.…”

Section: Introductionmentioning

confidence: 99%

Fatigue, Participation and Quality of Life in Adolescents and Young Adults with Acquired Brain Injury in an Outpatient Rehabilitation Cohort

Markus-Doornbosch

Holst

Kloet

et al. 2019

Developmental Neurorehabilitation

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Purpose: To study the association between fatigue and participation and QoL after acquired brain injury (ABI) in adolescents and young adults (AYAs). Materials & Methods: Cross-sectional study with AYAs aged 14-25 years, diagnosed with ABI. The PedsQL™ Multidimensional Fatigue Scale, Child & Adolescent Scale of Participation, and PedsQL™4.0 Generic Core Scales were administered. Results: Sixty-four AYAs participated in the study, 47 with traumatic brain injury (TBI). Median age at admission was 17.6 yrs, 0.8 yrs since injury. High levels of fatigue (median 44.4 (IQR 34.7, 59.7)), limited participation (median 82.5 (IQR 68.8, 92.3)), and diminished QoL (median 63.0 (IQR 47.8, 78.3)) were reported. More fatigue was significantly associated with more participation restrictions (β 0.64, 95%CI 0.44, 0.85) and diminished QoL (β 0.87, 95%CI 0.72, 1.02). Conclusions: AYAs with ABI reported high levels of fatigue, limited participation and diminished quality of life with a significant association between fatigue and both participation and QoL. Targeting fatigue in rehabilitation treatment could potentially improve participation and QoL.

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Section: Introductionmentioning

confidence: 99%

Fatigue, Participation and Quality of Life in Adolescents and Young Adults with Acquired Brain Injury in an Outpatient Rehabilitation Cohort

Markus-Doornbosch

Holst

Kloet

et al. 2019

Developmental Neurorehabilitation

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“…In addition, children with ABI and CP experience restricted participation across home, community, and school settings. [3][4][5][6][7][8][9] Over the last two decades, participation has received increasing attention as the ultimate outcome of rehabilitation. Participation is one of the key components of the International Classification of Functioning, Disability and Health (ICF).…”

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confidence: 99%

Assessing participation of children with acquired brain injury and cerebral palsy: a systematic review of measurement properties

Resch

Kruijsbergen

Hurks

et al. 2020

Develop Med Child Neuro

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Aim To examine which instruments used to assess participation of children with acquired brain injury (ABI) or cerebral palsy (CP) align with attendance and/or involvement constructs of participation; and to systematically review measurement properties of these instruments in children with ABI or CP, to guide instrument selection. Method Five databases were searched. Instruments that quantified ‘attendance’ and/or ‘involvement’ aspects of participation according to the family of participation‐related constructs were selected. Data on measurement properties were extracted and methodological quality of the studies assessed. Results Thirty‐seven instruments were used to assess participation in children with ABI or CP. Of those, 12 measured attendance and/or involvement. The reliability, validity, and responsiveness of eight of these instruments were examined in 14 studies with children with ABI or CP. Sufficient measurement properties were reported for most of the measures, but no instrument had been assessed on all relevant properties. Moreover, most psychometric studies have marked methodological limitations. Interpretation Instruments to assess participation of children with ABI or CP should be selected carefully, as many available measures do not align with attendance and/or involvement. Evidence for measurement properties is limited, mainly caused by low methodological study quality. Future studies should follow recommended methodological guidelines. What this paper adds Twelve instruments used to assess participation of children with acquired brain injury (ABI) or cerebral palsy (CP) aligned with attendance/involvement. Seven instruments have some psychometric evidence supporting their use with children with CP. For children with ABI, only the Child and Adolescent Scale of Participation has shown preliminary evidence of measurement properties.

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“…Childhood ABI results in physical (de Kloet et al, 2015), cognitive (Anderson, Godfrey, Rosenfeld, & Catroppa, 2012a), psychiatric (Max et al, 2012), and social (Ryan et al, 2016) consequences. In 35% to 50% of young people with ABI these deficits persist (Brehaut, Miller, Raina & McGrail, 2003; Lewis, Morris, Morris, Krawiecki & Foster, 2000).…”

Section: Introductionmentioning

confidence: 99%

What do Kids with Acquired Brain Injury Want? Mapping Neuropsychological Rehabilitation Goals to the International Classification of Functioning, Disability and Health

McCarron

Watson

Gracey

2019

J Int Neuropsychol Soc

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Objective To increase understanding of the community neuropsychological rehabilitation goals of young people with Acquired Brain Injury (ABI). Method 326 neuropsychological rehabilitation goals were extracted from the clinical records of 98 young people with ABI. The participants were 59% male, 2-19 years old, and 64% had a Traumatic Brain Injury. Goals were coded using the International Classification of Functioning, Disability and Health: Children and Youth Version (ICF-CY). Descriptive statistical analysis was performed to assess the distribution of goals across the ICF-CY. Chi Squared and Cramer’s V were used to identify demographic and injury-related associations of goal type. Results The distribution of goals was 52% Activities and Participation (AP), 28% Body Functions (BF), 20% Environmental Factors (EF) and <1% Body Structures (BS). The number of EF goals increased with age at assessment (V=0.14). Non-traumatic causes of ABI were associated with more EF goals (V=0.12). There was no association between sex or time post-injury and the distribution of goals across the ICF-CY. Conclusions Young people with ABI have a wide range of community neuropsychological rehabilitation goals that require an individualised, context sensitive and interdisciplinary approach. Community neuropsychological rehabilitation services may wish to ensure they are resourced to focus intervention on AP, with increasing consideration for EF as a young person progresses through adolescence. The findings of this research support models of community neuropsychological rehabilitation that enable wellness by combining direct rehabilitative interventions with attention to social context and systemic working across agencies.

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Determinants of participation of youth with acquired brain injury: A systematic review

Cited by 38 publications

References 57 publications

Fatigue, Participation and Quality of Life in Adolescents and Young Adults with Acquired Brain Injury in an Outpatient Rehabilitation Cohort

Fatigue, Participation and Quality of Life in Adolescents and Young Adults with Acquired Brain Injury in an Outpatient Rehabilitation Cohort

Assessing participation of children with acquired brain injury and cerebral palsy: a systematic review of measurement properties

What do Kids with Acquired Brain Injury Want? Mapping Neuropsychological Rehabilitation Goals to the International Classification of Functioning, Disability and Health

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