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The importance of identity and empowerment to teenagers with developmental co-ordination disorder
- Authors:
- LINGHAM R.P., et al
- Journal article citation:
- Child: Care, Health and Development, 40(3), 2014, pp.309-318.
- Publisher:
- Wiley
Aims: The aim of the current study was to gain an understanding of the experiences and aspirations of young people living with Developmental Coordination Disorder (DCD) in their own words. Methods: Eleven young people aged 11–16 years with a prior diagnosis of DCD were identified from child health records of two participating NHS trusts. The sample included seven boys and four girls, from different socio-economic backgrounds living in different parts of one large urban area in England. In depth one-to-one semi-structured interviews and subsequent follow-up small group interviews were carried out with the young people. Interviews were enhanced using participatory arts-based techniques. All interviews were recorded verbatim and transcribed. Narrative data were analysed using Lindseth's interpretive phenomenology. Results: The central theme of ‘We're all different’ described how the young person saw themselves and encompassed the formation of identity. Subthemes illustrated the attitude of the young people to their day to day lives, their difficulties and strategies used by the young people to overcome these difficulties in school and at home. The attitude of the school to difference, the presence of bullying, the accepting nature of the class, teachers and peers were vitally important. Areas of life that encouraged a positive sense of identity and worth included being part of a social network that gave the young people a sense of belonging, potentially one that valued differences as well as similarities. Conclusion: The current work highlights the need for services to adopt a model of DCD where the young person talks about what they can do and considers strategies of overcoming their difficulties. This has implications for education and future intervention strategies that focus on fostering psychological resilience and educational coping strategies rather than simply attempting to improve motor skills (Publisher abstract)
Rehabilitation service utilization in children and youth with cerebral palsy
- Authors:
- MAJNEMER Annette, et al
- Journal article citation:
- Child: Care, Health and Development, 40(2), 2014, pp.275-282.
- Publisher:
- Wiley
Aim: To describe the pattern of use of rehabilitation services in children and adolescents with cerebral palsy (CP), and to identify factors associated with use. Methods: In this study, parents of 91 school-age children and 167 adolescents with CP completed a questionnaire regarding educational and rehabilitation resources received within the last 6 months. Rehabilitation services included occupational therapy (OT), physical therapy (PT), speech language pathology (SLP), psychology and special education. Demographic characteristics were documented and developmental and functional status was assessed. Relationships between service utilisation and sociodemographic factors, functioning and school setting were determined. Results: Over half of children (53.2%) and adolescents (57.5%) were in regular schools; however, 41% of these required special education resources. The remainder (42.5–46.8%) was in special schools. The majority of children (84.6%) were receiving at least one rehabilitation service although this decreased (68.1%) in adolescence. PT and OT were most common and services were provided predominantly in the school setting. Services were primarily weekly direct interventions at school age, with weekly interventions or consultations most common for adolescents. Younger age was associated with service receipt at school age only. Children with greater motor limitations, lower IQ and greater activity limitations were more likely to receive OT, PT, SLP or special education. Children in segregated schools were significantly more likely to receive rehabilitation services, when compared with children in regular schools. Conclusions: The majority of children and youth received one or more services. Individuals with greater motor or cognitive challenges were more likely to receive a range of school-based services from rehabilitation specialists. When compared with children of school age, adolescents were less likely to receive services and when provided, services were more likely to be consultative. Services may need to be more optimally organised through childhood to enhance benefits to children with CP across activity limitation profiles. (Edited publisher abstract)
Cross-cultural validation of the Children's Assessment of Participation and Enjoyment (CAPE) in Spain
- Authors:
- LONGO E., et al
- Journal article citation:
- Child: Care, Health and Development, 40(2), 2014, pp.231-241.
- Publisher:
- Wiley
Background: Despite growing interest in the topic of participation, the construct has not yet been assessed in children and adolescents with and without cerebral palsy (CP) in Spain. As there are no available instruments to measure participation in leisure activities which have been adapted in this country, the goal of this study was to validate a Spanish version of the Children's Assessment of Participation and Enjoyment (CAPE). Method: The sample comprised 199 children and adolescents with CP and 199 without CP, between 8 and 18 years of age, from seven regions in Spain. The adaptation of the original version of CAPE was carried out through translation and backward translation, and the validity of the instrument was analysed. Construct validity was assessed through the correlation of the diverse CAPE domains and the quality of life domains (KIDSCREEN questionnaire). Discriminant validity was established by comparing children and adolescents with CP and typically developing children and adolescents. For test–retest reliability, the children and adolescents with and without CP completed the CAPE questionnaire twice within 4 weeks. Results: The correlations found between the CAPE domains and the quality of life domains show that the CAPE presents construct validity. The CAPE discriminated children and adolescents with CP from those without any disability in the results of participation. According to most CAPE domains, typically developing children and adolescents engage in a greater number of activities than children and adolescents with CP. Test–retest reliability for the Spanish version of CAPE was adequate. Conclusion: The study provides a valid instrument to assess the participation of children and adolescents with and without CP who live in Spain. (Publisher abstract)
Speech, communication and use of augmentative communication in young people with cerebral palsy: The SH&PE population study
- Authors:
- COCKERILL H., et al
- Journal article citation:
- Child: Care, Health and Development, 40(2), 2014, pp.149-157.
- Publisher:
- Wiley
Background: Communication is frequently impaired in young people (YP) with bilateral cerebral palsy (CP). Important factors include motoric speech problems (dysarthria) and intellectual disability. Augmentative and Alternative Communication (AAC) techniques are often employed. The aim was to describe the speech problems in bilateral CP, factors associated with speech problems, current AAC provision and use, and to explore the views of both the parent/carer and young person about communication. Methods: A total population of children with bilateral CP (n = 346) from four consecutive years of births (1989–1992 inclusive) with onset of CP before 15 months were reassessed at age 16–18 years. Motor skills and speech were directly assessed and both parent/carer and the young person asked about communication and satisfaction with it. Results: Sixty had died, eight had other conditions, 243 consented and speech was assessed in 224 of whom 141 (63%) had impaired speech. Fifty-two (23% of total YP) were mainly intelligible to unfamiliar people, 22 (10%) were mostly unintelligible to unfamiliar people, 67 (30%) were mostly or wholly unintelligible even to familiar adults. However, 89% of parent/carers said that they could communicate 1:1 with their young person. Of the 128 YP who could independently complete the questions, 107 (83.6%) were happy with their communication, nine (7%) neither happy nor unhappy and 12 (9.4%) unhappy. A total of 72 of 224 (32%) were provided with one or more types of AAC but in a significant number (75% of 52 recorded) AAC was not used at home, only in school. Factors associated with speech impairment were severity of physical impairment, as measured by Gross Motor Function Scale level and manipulation in the best hand, intellectual disability and current epilepsy. Conclusions: In a population representative group of YP, aged 16–18 years, with bilateral CP, 63% had impaired speech of varying severity, most had been provided with AAC but few used it at home for communication. (Publisher abstract)
Developing an outcomes model for disabled children in Scotland
- Author:
- CHILDREN IN SCOTLAND
- Publisher:
- Scotland. Scottish Government Social Research
- Publication year:
- 2013
- Pagination:
- 67
- Place of publication:
- Edinburgh
Disabled children have broadly the same aspirations as non-disabled children and the outcomes they would like to achieve are therefore similar. However, for many disabled children and young people, there are fundamental outcomes that need to be achieved as a foundation for others, including and especially, communication. This project focused on better understanding ‘outcome models’ for all children and young people and for children and young people in the diverse and challenging context of disability. This research was commissioned by the Scottish Government’s Children’s Rights and Wellbeing Division to identify and develop an outcomes model based on Getting It Right for Every Child (GIRFEC), and the SHANARRI indicators of wellbeing (“Safe, Healthy, Achieving, Nurtured, Active, Respected, Responsible, Included”) for disabled children and young people in Scotland. It was to include both children with disabilities as defined by the Equality Act 2010 and those defined as having additional support needs in the context of the Education (Additional Support for Learning) (Scotland) Act 2004. The project was modified early on to focus on mapping outcomes work that is already in progress, and to identify the essential components of outcomes models. (Edited publisher abstract)
Developing an outcomes model for disabled children in Scotland
- Author:
- CHILDREN IN SCOTLAND
- Publisher:
- Scotland. Scottish Government Social Research
- Publication year:
- 2013
- Pagination:
- 3
- Place of publication:
- Edinburgh
This research was commissioned by the Scottish Government’s Children’s Rights and Wellbeing Division to identify and develop an outcomes model based on Getting It Right for Every Child (GIRFEC), and the SHANARRI indicators of wellbeing, for disabled children and young people in Scotland. It was to include both children with disabilities as defined by the Equality Act 2010 and those defined as having additional support needs in the context of the Education (Additional Support for Learning) (Scotland) Act 2004. The project was modified early on to focus on mapping outcomes work that is already in progress, and to identify the essential components of outcomes models. These research findings summarises the main report's findings. (Edited publisher abstract)
Effects of short-term disability awareness training on attitudes of adolescent schoolboys toward persons with a disability
- Authors:
- MOORE Danielle, NETTLEBECK Ted
- Journal article citation:
- Journal of Intellectual and Developmental Disability, 38(3), 2013, pp.223-231.
- Publisher:
- Taylor and Francis
Background: Schoolboys (N = 156, M age = 13 years) participated in a disability awareness training programme that included guest speakers (athletes from the Paralympics and the Special Olympics), a documentary about people with a disability, a disability simulation activity, and factual information about different disabilities. Method: Participants were allocated to a training program or a control condition. Subsequently, control participants completed the training program. Attitudes toward disability were measured by the Chedoke–McMaster Attitudes Towards Children With Handicaps (CATCH) Scale and the scale from the “Just Like You” disability awareness intervention, before and after training. Results: Training improved attitude scores, and gains were retained at one-month follow-up. Conclusions: Disability awareness training that delivered relevant information by involving guest speakers with a disability, included documentary evidence about the lives of people with a disability, and included interactive discussion, was successful. CATCH and “Just Like You” are useful tools for measuring self-reported attitudes about disability. (Publisher abstract)
Systems of care: transition from the bio-psycho-social perspective of the International Classification of Functioning, Disability and Health
- Author:
- CAMARGO O. Kraus de
- Journal article citation:
- Child: Care, Health and Development, 37(6), November 2011, pp.792-799.
- Publisher:
- Wiley
The transition process of adolescents with complex health conditions occurs in all areas of their life. Systems of care are usually designed within certain aspects of life, as addressed by health, education and social welfare. Recent policies are trying to integrate these systems allowing for a more integrated transition process. This article illustrates how these developments are represented within the framework of the International Classification of Functioning, Disability and Health (ICF) and provides arguments that favour a greater integration of systems of care. Examples of systems of care from North America, Germany and the UK are described. In order to assist young people in transition, there is a consensus that the approach should be individualised. The overall goal of any intervention or service should be to achieve optimal functioning of the patients. In the framework of the ICF, this means that biomedical and contextual issues need to be taken into consideration. This requires an exchange of information between the different systems or the integration of those systems involved with the patient. The author concludes that close collaboration between agencies are useful in smoothing the transition process.
What influences participation in leisure activities of children and youth with physical disabilities? A systematic review
- Authors:
- BULT M. K., et al
- Journal article citation:
- Research in Developmental Disabilities, 32(5), September 2011, pp.1521-1529.
- Publisher:
- Elsevier
A range of variables associated with participation in leisure activities was identified and reported in the 17 studies included in this systematic review. The bulk of the evidence comes from studies of young people with cerebral palsy, although similar variables seem to apply to children with other physical disabilities. Age was found to be an important factor that influences participation, but there is no evidence on the variables associated with different age groups. The need for more studies in more diverse populations, and a clearer definition and standardised measure of participation is emphasised.
Students’ behavioural intentions towards peers with disability
- Authors:
- BROWN Hilary K., et al
- Journal article citation:
- Journal of Applied Research in Intellectual Disabilities, 24(4), July 2011, pp.322-332.
- Publisher:
- Wiley
Inclusive education is an important element of the current focus on social inclusion for individuals with disabilities. A barrier to the social inclusion of students with disabilities is the attitude of their non-disabled peers towards them. The aim of this study was to compare the behavioural intentions of high school students towards individuals with intellectual disabilities and individuals with physical disabilities, and to explore reasons for these behavioural intentions. A sample of 319 Grade 9 and Grade 12 students in Ontario, Canada completed a questionnaire regarding their behavioural intentions towards peers with intellectual or physical disabilities. They also responded to open-ended questions concerning their feelings about participating in a class task or social activity with these individuals. The findings showed that behavioural intentions towards students with intellectual disabilities were significantly more negative than were those towards students with physical disabilities. This difference was also reflected in responses to the open-ended questions. Common reasons for discomfort were perceived dissimilarities in interests or abilities. The findings demonstrate a need to provide interventions to support students with and without disabilities to find commonalities and to encourage reciprocity in their interactions.