ArticlesSelf-reported quality of life of 8–12-year-old children with cerebral palsy: a cross-sectional European study
Introduction
The UN Convention on the Rights of the Child,1 to which all European Union countries are signatories, states that children's views must be taken into account in all matters concerning them (article 12) and that disabled children are entitled to a “full and decent life” (article 23). Article 7 of the 2006 UN Convention on the Rights of Persons with Disabilities2 emphasises the right of disabled children to express their views.
Good quality of life (QoL) is a key outcome for the individual child and is what society wants for all children. QoL is defined by WHO as “an individual's perception of their position in life in the context of the culture and value systems in which they live, and in relation to their goals, expectations, standards and concerns”.3 QoL is therefore subjective and so must be reported by the individual concerned whenever possible. This is a challenge when assessing children's QoL because they have typically been regarded as unreliable respondents.4 Evidence is accumulating that children can self-report QoL reliably if their emotional development, cognitive ability, and reading level are taken into account.5
Little is known about QoL of disabled children and previous studies usually included few children,6, 7, 8 did not use population-based samples,9, 10, 11, 12, 13, 14 or relied on parental reports.9, 12, 14, 15, 16, 17 A further difficulty in some studies that purport to capture QoL is that the instruments used focus on function and activities,18, 19 therapeutic consequences,12 or effect on parents.9 Such studies inevitably rate disabled children lower than the general population, but it is misleading to call their outcome measures QoL because children's satisfaction with their lives might not correspond to their ability to undertake certain tasks or activities20 or to the consequences for their family.
Children with cerebral palsy have a range of impairments that are typically present in many disabled children. The objective of this report is to describe the QoL of children with cerebral palsy as reported by the children themselves, to identify factors that affect this QoL, and to compare it with the QoL of children in the general population.
The phrase “disabled child” rather than “child with disability” will be used in this paper, although we recognise that there are arguments for and against each phrase.21 In particular, those in agreement with the social model of disability22 will agree with the phrase “child with impairment” but prefer “disabled child” because the child is disabled by society or the environment. The phrase “child with disability”, although laudable for being child centred, nevertheless implies that the disability is something residing in or intrinsic to the child.
Section snippets
Participants and procedures
The research is part of the wider Study of Participation of Children with Cerebral Palsy Living in Europe (SPARCLE), which examines how the QoL and participation of children with cerebral palsy relate to their environment, within the conceptual framework of the social model of disability.22 Only aspects relevant to this report are summarised below because the SPARCLE protocol, sampling strategy, participation rates, and potential bias have been reported in detail elsewhere.23, 24
Children were
Results
The general population sample consisted of 3219 children whose sociodemographic characteristics are shown in table 2. The final multivariable models, adjusted for country, are summarised in the right-hand column of table 1. QoL on all domains varied with sociodemographic factors—in particular sex, age, parental employment status, parental educational qualifications, and whether the child lived with one or two parents. However, these models explained only 4–13% of the variation in QoL. There
Discussion
For children with cerebral palsy, type and severity of impairments were not associated with QoL for six KIDSCREEN domains: psychological wellbeing, self-perception, social support, school environment, financial resources, and social acceptance. Specific impairments were associated with poorer QoL in the four other domains: children with poorer walking ability had poorer physical wellbeing; those with intellectual impairment had lower moods and emotions and less autonomy; and those with speech
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Dr Schirripa died in January, 2006