Search results for ‘Subject term:"cerebral palsy"’ Sort:
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I can't walk but I can crawl: living with cerebral palsy
- Author:
- ROSS Joan
- Publisher:
- Paul Chapman
- Publication year:
- 2005
- Pagination:
- 212p.
- Place of publication:
- London
Joan is an adult with cerebral palsy who grew up when compulsory education was not in place for all children. Her memories of her childhood before inclusion, her development as a teenager and her adult life are chronicled without sentiment and this book offers the reader an autobiography of someone who lives with a significant disability. "I Can't Walk but I can Crawl" is supported by Scope who have provided an introduction and informative commentary about cerebral palsy. The book is of general interest and offers information and inspiration to Scope members and those whose lives are touched by cerebral palsy.
Getting involved: some of the options available to get involved in education, volunteering, employment opportunities and campaigning
- Author:
- SCOPE
- Publisher:
- SCOPE
- Publication year:
- 2005
- Pagination:
- 6p.
- Place of publication:
- London
Volunteers have always been vital in leading and delivering Scope’s work. Effective community involvement, through the recruitment of properly trained and supported volunteers, enables Scope to deliver the strongest possible message in its campaign for disabled people achieving equality.
Tenants face uncertainty as Scope is accused of money-grabbing
- Author:
- HAYES Darren
- Journal article citation:
- Community Care, 8.9.05, 2005, pp.16-17.
- Publisher:
- Reed Business Information
While disappointing, this news was nothing compared with the bombshell that followed. The flats, where some of the residents had lived for more than 30 years, would shut in October and they would have to be found new homes. Last year, Scope agreed to sell a plot of land next to the flats to developers that wanted to build a retirement village. Part of the deal was for new flats for the 12 supported housing tenants who have cerebral palsy. But in January, Scope changed its stance on residential schemes, such as the one at Cyncoed. It deemed it should no longer invest in what it called institutional care because it “disempowered” people, and decided to sell the flats as well.
Child or family assessed measures of activity performance and participation for children with cerebral palsy: a structured review
- Authors:
- MORRIS C., KURINCZUK J. J., FITZPATRICK R.
- Journal article citation:
- Child: Care, Health and Development, 31(4), July 2005, pp.397-407.
- Publisher:
- Wiley
There is a need to measure children's 'activity performance and participation' as defined in the World Health Organization's International Classification of Functioning, Disability and Health for Children and Youth (WHO ICF). The aim of this review is to identify instruments that are suitable for use in postal surveys with families of children with cerebral palsy. The authors conducted a structured review of instruments that use child or family self-assessment of 'activity performance and participation'. The review involved a systematic search for instruments using multiple published sources. Appraisal of the instruments used the predefined criteria of appropriateness, validity, reliability, responsiveness, precision, interpretability, acceptability and feasibility. There are relatively few child or family assessed instruments appropriate for measuring children's activities and participation. Seven instruments were identified that could potentially be administered by mail. The Assessment of Life Habits for Children (LIFE-H) was the most appropriate instrument as assessed by its content but the reliability of child or family self-assessment is not known. If the LIFE-H were shown to be a reliable self-report measure then the LIFE-H would be the recommended choice. Currently, the Activities Scale for Kids and the condition-specific Lifestyle Assessment Questionnaire for cerebral palsy (LAQ-CP) provide the broadest description of what and how frequently children with cerebral palsy perform a range of activities and thereby indicate participation. The LAQ-CP also provides additional contextual information on the impact of any disability on the participation of the family unit. There remains much scope for developing valid and reliable self-assessed measures corresponding to the WHO ICF dimensions of activities and participation.
Mothers' voice: a qualitative study on feeding children with cerebral palsy
- Author:
- SLEIGH G.
- Journal article citation:
- Child: Care, Health and Development, 31(4), July 2005, pp.373-383.
- Publisher:
- Wiley
Around one third of children with cerebral palsy have severe difficulty eating and drinking and are at risk of undernourishment. A gastrostomy feeding tube may be offered as a way of providing nourishment as it bypasses the main physical difficulties. For the families feeding and concerns about the method of feeding affect many areas of their daily life but we know little about what the experience is actually like. This study aimed to explore mothers' experience of feeding children with cerebral palsy. Ten principal carers for children with cerebral palsy and severe eating difficulty were interviewed. Four of the children, one girl and three boys aged 2.5 to 4.5 years were being fed solely by mouth and six children, three girls and three boys, aged 4.5 years to 15 years and 10 months, were fed via a gastrostomy feeding tube. Long, loosely structured tape recorded interviews were transcribed and manually analysed using a phenomenological approach. This involved extracting and coding each relevant phrase that contained meaning; then through sequential stages of ordering and reduction into themes the invariant meanings were uncovered. The transcripts were analysed in two groups, oral and gastrostomy feeding, in an identical manner. Phenomenological analysis resulted in two prose accounts that described in depth the essence of the experience. The accounts were mutually informative. Both groups treasured feeding by mouth suggesting that support for oral feeding should be given a higher priority. The accounts explained why some professional encounters added to families' stress and why consistency of care is so important. The study gives insight about the kinds of support families find helpful. This study should help those involved to understand the families' predicament better and so make a contribution towards providing more appropriate support.
Exploring the comparative responsiveness of a core set of outcome measures in a school-based conductive education programme
- Authors:
- WRIGHT F.V., BOSCHEN K., JUTIA J.
- Journal article citation:
- Child: Care, Health and Development, 31(3), May 2005, pp.291-302.
- Publisher:
- Wiley
Conductive education (CE) is a holistic educational system that uses an active cognitive approach to teach individuals with motor disorders to become more functional participants in daily activities. While CE's popularity continues to grow in North America and Europe, its effectiveness has not been established. This study aims to determine which outcome measures from a core set were most responsive to physical, functional and psychosocial changes associated with a school-based CE programme. This was a one-group before and after data collection design using an 8-month follow-up period. We enrolled a referral sample of nine children with cerebral palsy in Kindergarten or Grade 1 (Gross Motor Function Classification System levels 3, 4 or 5). The study took place within a school-based CE programme at a Canadian children's rehabilitation centre. Children participated in a CE full-day class for an entire school year. Physical, functional, psychosocial and participation measures included: Gross Motor Function Measure (GMFM), Quality of Upper Extremity Skills Test (QUEST), Peabody Developmental Motor Scales, Paediatric Evaluation of Disability Inventory (PEDI), Pictorial Scale of Perceived Competence and Social Acceptance for Young Children, Individualized Educational Plan, and Goal Attainment Scaling (GAS). Four children from the study's second year were also evaluated on the Impact on Family Scale (IFS), GAS and School Function Assessment. The Gross Motor Function Measure, QUEST, PEDI (Caregiver Assistance) and IFS were most responsive to change. GAS was useful in documenting and quantifying goals. Problems were encountered in evaluating self-esteem and school participation. Several strong measures of outcome were identified. Concludes that further work is needed to find valid and sensitive psychosocial and school participation measures for these young children.
Using the measure of processes of care to assess parents' views of a paediatric therapy service
- Authors:
- KNOX Virginia, MENZIES Shona
- Journal article citation:
- British Journal of Occupational Therapy, 68(3), March 2005, pp.110-116.
- Publisher:
- Sage
Bobath Scotland is a tertiary referral centre providing therapy for children with cerebral palsy. Reports on a study to investigate families' perceptions of the care received at the Bobath Centre in Scotland during their child's therapy block, in one 12-month period, and the extent that the service was deemed to be 'family friendly' by those users. The Measure of Processes of Care (MPOC) was chosen as a means of assessment. The MPOC consists of five scales: enabling and partnership; general information; specific information; coordinated and comprehensive care; and respectful and supportive care. Questionnaires were sent to 114 families and 72 were returned completed (63%). Overall mean scores were high, demonstrating that families were satisfied with their care. Concludes that the MPOC provide and appropriate tool to investigate the perceptions of care of families attending a paediatric centre.
Development of a condition-specific measure of quality of life for children with cerebral palsy: empirical thematic data reported by parents and children
- Authors:
- WATERS E., et al
- Journal article citation:
- Child: Care, Health and Development, 31(2), March 2005, pp.127-135.
- Publisher:
- Wiley
Although there is increasing recognition that quality of life (QOL) and health-related quality of life (HRQOL) are important outcome variables in clinical trials for children with cerebral palsy, there are substantial limitations in existing measures of QOL. This study identify themes of QOL for children with cerebral palsy and their parents to guide the development of a new condition-specific QOL scale. A qualitative study of parent and child views on QOL composition was conducted, using a grounded theory framework. Families participated in semistructured interviews on QOL until thematic saturation was reached (n = 28 families). Overall, 13 themes emerged from the interviews: physical health, body pain and discomfort, daily living tasks, participation in regular physical and social activities, emotional well-being and self-esteem, interaction with the community, communication, family health, supportive physical environment, future QOL, provision of, and access to services, financial stability, and social well-being. Research with parents and children with cerebral palsy, representative of severity across the disease spectrum and socio-economic status, reinforced and expanded on the traditional themes that have underpinned QOL measurement development. This has implications not only for the development of a new QOL scale for children with cerebral palsy, but also for clinical interventions and community care management.