92 research outputs found
Parenting stress and children with cerebral palsy: A European cross-sectional survey
No full textAimThe aim of this study was to describe stress in the parents of children with cerebral palsy and investigate associations with very high stress.MethodA cross-sectional survey was conducted of parents of 818 children aged 8 to 12 years from nine regions in Europe. Families were eligible to participate if they were living in one of the specified geographic areas. Parental stress was captured using the Parenting Stress Index Short Form, which has 36 items and takes 10 minutes to complete. Parents rate items on a 5-point Likert scale, with higher scores indicating higher stress. The Short Form yields scores on three subscales and a Total Stress score. A trained research associate administered the questionnaire in the child’s home and visits lasted 90 to 120 minutes. All data collected were reported by parents unless otherwise stated.ResultsThe Total Stress score on the Parenting Stress Index was dichotomized into scores of less than 99 or 99 or more, the latter indicating ‘very high’ stress. Most respondents were mothers (94%), and 26% reported very high stress levels. The parents of children with communication impairment had higher odds for very high stress (odds ratio [OR] 1.9; 95% confidence interval [CI] 1.2–3.0) than those whose child had no such impairment; the parents of children with moderate or severe pain had higher odds for very high stress (OR 1.7 [95% CI 1.1–2.4] and 2.5 [95% CI 1.5–4.3] respectively) than those whose child had no pain; and the parents of children with an intellectual impairment had higher odds for very high stress (OR 1.8; 95% CI 1.2–2.9) than those whose child had none. There was no association between very high stress and motor impairment. The subscales ‘parent–child dysfunctional interaction’ and ‘difficult child’ contributed most to the Total Stress score.InterpretationParents of children with communication difficulties, intellectual impairment, or pain are at very high risk of stress. The final model explained 12% of the observed variation in very high stress
Double whammy: transitioning from children’s to adult services and transitioning to adulthood
No full textAllan Colver recently gave a talk at the LSE Health and Social Care Formal Seminar. His talk is timely and relevant. It coincides and overlaps on the very same issues covered in the recently launched NICE guideline on the challenges young people face when transitioning from children’s to adult health and/or social care services
Study protocol: SPARCLE – a multi-centre European study of the relationship of environment to participation and quality of life in children with cerebral palsy
No full textAbstract Background SPARCLE is a nine-centre European epidemiological research study examining the relationship of participation and quality of life to impairment and environment (physical, social and attitudinal) in 8–12 year old children with cerebral palsy. Concepts are adopted from the International Classification of Functioning, Disability and Health which bridges the medical and social models of disability. Methods/Design A cross sectional study of children with cerebral palsy sampled from total population databases in 9 European regions. Children were visited by research associates in each country who had been trained together. The main instruments used were KIDSCREEN, Life-H, Strength and Difficulties Questionnaire, Parenting Stress Index. A measure of environment was developed within the study. All instruments were translated according to international guidelines. The potential for bias due to non response and missing data will be examined. After initial analysis using multivariate regression of how the data captured by each instrument relate to impairment and socio-economic characteristics, relationships between the latent traits captured by the instruments will then be analysed using structural equation modelling. Discussion This study is original in its methods by directly engaging children themselves, ensuring those with learning or communication difficulty are not excluded, and by studying in quantitative terms the crucial outcomes of participation and quality of life. Specification and publication of this protocol prior to analysis, which is not common in epidemiology but well established for randomised controlled trials and systematic reviews, should avoid the pitfalls of data dredging and post hoc analyses.</p
Embodied selves in transition: Disabled young bodies
No full textPhysically disabled young people often experience pain; in addition their bodies are also undergoing changes associated with adolescence. We do not know much about what this is like for young people and how their disability interacts with their changing body and what this means for them.
Adolescence is a period that is surrounded by social and cultural expectations, influenced by notions of normality. Disability complicates such expectations as those around disabled young people often make assumptions about how 'normal' tiieyoung person can be. The disabled young person may not necessarily agree with such expectations and views, but nevertheless they have to live with and deal with such expectations, alongside other factors that influence adolescence,such as gender and sexuality. Our research project aims to consider:
what is it like to be disabled and live with pain, as you move towards adulthood?
Our project will work with a group of young people to explore their lives at this key stage in their development and social lives. A number of activities will be undertaken, including qualitative interviews, digital photography, and social networking.
The research will be supported by a research panel of disabled young people who will guide research design and analysis
Why are children with cerebral palsy more likely to have emotional and behavioural difficulties?
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