Cerebral palsy ‐the transition from youth to adulthood

Stevenson, Clarissa J.; Pharoah, P. O. D.; Stevenson, Richard

doi:10.1111/j.1469-8749.1997.tb07441.x

Cited by 144 publications

(95 citation statements)

References 15 publications

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“…Adolescents with SB exhibit substantial variability in their adaptation to these secondary difficulties.Adaptation is commonly defined as success with the major developmental tasks expected for a person of a given age and gender in the context of the culture, society, and time (Masten & Coatsworth, 1998;Rutter, 1985Rutter, , 1987Stevenson et al, 1997). For adolescents with SB, adaptation includes becoming skilled in disease self-management and use of compensatory strategies for difficulties in academic functioning.…”

Section: Introductionmentioning

confidence: 99%

The relationship of neuropsychological functioning to adaptation outcome in adolescents with spina bifida

Heffelfinger

Koop

Fastenau

et al. 2008

J Int Neuropsychol Soc

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Adolescents with spina bifida (SB) vary in their ability to adapt to the disease, and it is likely that numerous risk and protective factors affect adaptation outcomes. The primary aim was to test neuropsychological impairment, exemplified herein by executive dysfunction, as a risk factor in the Ecological Model of Adaptation for Adolescents with SB. Specific hypotheses were that: (1) executive functioning predicts the adaptation outcome of functional independence in adolescents with SB; (2) executive functioning mediates the impact of neurological severity on functional independence; and (3) family and adolescent protective factors are related to functional independence and moderate the relationship between executive functioning and functional independence. Forty-three adolescents aged 12-21 years completed neuropsychological measures and an interview that assessed risk, adolescent and family protective factors, and functional independence. Age, level of lesion, executive functioning, and the protective factor adolescent activities were significantly correlated with the functional independence outcome. In hierarchical regression analysis, the model accounted for 61% of the variance in functional independence outcomes. Executive functioning mediated the impact of neurological severity on functional independence. (JINS, 2008, 14, 793-804.)

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Section: Introductionmentioning

confidence: 99%

The relationship of neuropsychological functioning to adaptation outcome in adolescents with spina bifida

Heffelfinger

Koop

Fastenau

et al. 2008

J Int Neuropsychol Soc

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“…17,18 Secondary musculoskeletal impairments may be exacerbated by the fact that health service provision and contact with the healthcare system become fragmented after adolescents leave school. 19,20 What implications do these changes have for clinicians, researchers, parents, and the adolescents themselves, and how do they affect QOL? To answer these questions, it is important first to consider what is already known about QOL and HRQOL among adolescents with CP.…”

mentioning

confidence: 99%

Quality of life among adolescents with cerebral palsy: what does the literature tell us?

Livingston

Rosenbaum²,

Russell

et al. 2007

Develop Med Child Neuro

148

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This review describes trends in quality of life (QOL) and health-related quality of life (HRQOL) among adolescents with cerebral palsy (CP). Twenty original articles were identified by a structured search of multiple databases and grouped by design. Categories included descriptive crosssectional studies (n=8), measurement validation studies (n=9), and exploratory qualitative studies (n=3). Several trends were apparent. First, individuals with CP are reported to have decreased QOL and HRQOL compared with a normative population in some but not all areas of well-being. Second, functional status measures such as the Gross Motor Function Classification System are reliable indicators of variations in physical function, but do not correlate consistently with psychosocial well-being. Third, although adolescents with CP have different life issues than adults or children, limited research on factors associated with QOL and HRQOL has been described for this age range. We recommend that clinicians and researchers interested in assessing well-being among adolescents with CP include participants from across the spectrum of motor impairment, allow adolescents to self-report whenever possible, and assess adolescents independently, rather than including them with individuals from other age groups or clinical populations.Cerebral palsy (CP) is a clinical description of a chronic functional disability. The definition has recently been revised as '… a group of permanent disorders of the development of movement and posture, causing activity limitation, that are attributed to non-progressive disturbances that occurred in the developing fetal or infant brain. The motor disorders of cerebral palsy are often accompanied by disturbances of sensation, perception, cognition, communication, and behaviour, by epilepsy, and by secondary musculoskeletal problems.' 1 This definition follows concepts introduced by the World Health Organization's International Classification of Functioning, Disability and Health. 2 Changes in our conception of CP reflect an expansion beyond the functional limitations associated with motor impairment towards a recognition of the personal experience of individuals in this population. Under the broad notion of 'well-being', researchers have begun to consider functional status, health status, quality of life (QOL), and health-related quality of life (HRQOL). 'Functional status' can be conceptualized as 'the degree to which an individual is able to perform socially allocated roles free of physical or mental limitations ', 3 and focuses on the performance of specific tasks, such as 'activities of daily living'. 4 'Health status' considers broader medical and functional well-being, and is sometimes reported in terms of 'impact of disability'. 5 Assessments of QOL and HRQOL shift the description of well-being into the realm of the subjective, because these outcomes are not directly observable by a third party and cannot be measured along a physical dimension. 6 Although the areas of health considered in measurements of...

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“…Apart from intellectual and sensory disorders, the reasons for the low employment rate are the problems in the domain of social interaction. Researches indicate that young people with CP are less socially active than their peers of typical population (Stevenson, Pharoah & Stevenson, 1997). The problem in social functioning is a very significant factor, associated with obtaining employment and integration in the working environment (Wadsworth & Harper 1993).…”

Section: Introductionmentioning

confidence: 99%