Are families with adolescents and young adults with cerebral palsy the same as other families?

Magill‐Evans, Joyce; Darrah, Johanna; Pain, Kerrie; Adkins, Robin; Kratochvil, Marianne

doi:10.1017/s0012162201000858

Cited by 79 publications

(67 citation statements)

References 23 publications

Supporting

Mentioning

Contrasting

Unclassified

Order By: Relevance

“…7 What has become clear, however, is that QOL refers to the notion of holistic well-being, 8 whereas HRQOL focuses on the health-related components of life satisfaction, 9 such as self-care, mobility, and communication. Assessments of QOL and HRQOL thus reflect personal valuations of daily experience, and resonate with other subjective outcomes, such as 'life satisfaction', 10 'sense of coherence', 11 and 'the selfconcept'. 12 Some researchers have used the terms functional status, health status, and QOL interchangeably in the past, 9 but recent consideration suggests that these outcomes are fundamentally different.…”

mentioning

confidence: 88%

See 1 more Smart Citation

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

Livingston

Rosenbaum²,

Russell

et al. 2007

Develop Med Child Neuro

152

View full text Add to dashboard Cite

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...

show abstract

mentioning

confidence: 88%

“…Only three studies used a differential approach, whereby individuals who could communicate completed the measures independently, whereas those who could not were assessed by a proxy. 10 32,33 and the Caregiver Questionnaire (CQ). 50 One qualitative study described the development of a disease-specific measure of QOL for children 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

152

View full text Add to dashboard Cite

show abstract

“…6 What seems clear, however, is that QOL refers to the notion of holistic well-being, 7 such as the perceived importance of physical health, where one lives and spends time, having friends, and access to education and work; whereas HRQOL focuses on the health-related components judged to be associated with life satisfaction, 8 such as self-care, mobility, and communication. Assessments of QOL and HRQOL thus reflect personal valuations of daily experience, much like other subjective outcomes, such as life satisfaction, 9 sense of coherence, 10 and self-concept. 11 Utility theory represents an econometric understanding of HRQOL 12 that can be used to calculate quality-adjusted life years.…”

mentioning

confidence: 99%

Quality of life and health‐related quality of life of adolescents with cerebral palsy

Rosenbaum

Livingston

Palisano

et al. 2007

Develop Med Child Neuro

123

View full text Add to dashboard Cite

This study assessed quality of life (QOL) and health-related quality of life (HRQOL) of 203 adolescents with cerebral palsy (111 males, 92 females; mean age 16y [SD 1y 9mo]). Participants were classified using the Gross Motor Function Classification System (GMFCS), as Level I (n=60), Level II (n=33), Level III (n=28), Level IV (n=50), or Level V (n=32). QOL was assessed by self (66.5%) or by proxy (33.5%) with the Quality of Life Instrument for People With Developmental Disabilities, which asks about the importance and satisfaction associated with the QOL domains of Being, Belonging, and Becoming; HRQOL was captured through proxy reports with the Health Utilities Index, Mark 3 (HUI3), which characterizes health in terms of eight attributes, each having five or six ordered levels of function. GMFCS level was not a source of variation for QOL domain scores but was significantly associated with the eight HRQOL attributes and overall HUI3 utility scores (p<0.05). Some QOL domain scores varied significantly by type of respondent (self vs proxy; p<0.05). Overall HUI3 utility values were significantly but weakly correlated with QOL Instrument scores for Being (r=0.37), Belonging (r=0.17), Becoming (r=0.20), and Overall QOL (r=0.28), and thus explain up to 14% of the variance (r 2 ). These findings suggest that although QOL and HRQOL are somewhat related conceptually, they are different constructs and need to be considered as separate dimensions of the lives of people with functional limitations.Important aspects of life for individuals with cerebral palsy (CP) include social participation and having meaning and purpose in life. During the past decade there has been a growing interest in concepts and measures associated with quality of life (QOL). Discussion continues about the meaning of various constructs of QOL, 1 as people work to describe the important conceptual variations among terms such as functional status, health status, and health-related quality of life (HRQOL). Livingston et al. 2 have reviewed the literature that reports various aspects of well-being among adolescents with CP. They concluded that measurement of QOL and HRQOL poses methodological challenges and observed that emphasis has traditionally been on functional or health status rather than personal perspectives of well-being.In brief, 'functional status' refers to 'the degree to which an individual is able to perform socially allocated roles free of physical or mental limitations'; 3 it focuses on the performance of specific tasks, such as activities of daily living. When people refer to 'health status' they generally consider broader medical and functional well-being, sometimes reported in terms of 'impact of disability'. 4 Assessments of QOL and HRQOL shift the emphasis on well-being to the realm of the subjective, toward outcomes not directly observable by a third party and not usually measured along a physical dimension. 5 Although the area of health or function measured in QOL and HRQOL may be either objective or subjective (such as the abil...

show abstract

“…This corroborates the literature data [10,9] , fathers seem less available, evoking their occupation. Few studies have described the experiences of parents and identified factors that influences the adaptation of parents to their disabled child [11,12,13,14,15] . Similarly, Hilbert and al., 2000; Elliot and Luker, 1997) [16,17] , showed in their studies concerning holders parents of children with chronic diseases and disabling the latter have negatively affected their family and social life that is found totally dominated by the disease.…”

Section: Discussionmentioning

confidence: 99%

Factors Associated with Perceived Stress of Parents with Children and Teenagers Suffering From Cerebral Palsy

Mouilly¹,

Faiz²,

Ahami³

2017

IOSR JDMS

View full text Add to dashboard Cite

Are families with adolescents and young adults with cerebral palsy the same as other families?

Cited by 79 publications

References 23 publications

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

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

Quality of life and health‐related quality of life of adolescents with cerebral palsy

Factors Associated with Perceived Stress of Parents with Children and Teenagers Suffering From Cerebral Palsy

Contact Info

Product

Resources

About