Suchergebnisse

Increasing children's and young people's participation in decisions, about their own care and about service development, is a policy priority. Although in general participation is increasing, disabled children are less likely to be involved than non‐disabled children and it is unclear to what extent children with complex needs or communication impairments are being included in participation activities. This article presents research exploring factors to support good practice in participation and discusses policy and practice implications.

ABSTRACTThe Integrated Children's System (ICS) is premised on a single approach to assessment/review, ideally providing a more coherent, comprehensive and efficient system of electronic information recording and sharing among different groups of practitioners. Despite its holistic aims for all children in need, questions have been raised about the use of ICS with certain groups of children, especially those who do not follow normative patterns, such as disabled children. This paper explores the introduction of ICS with disabled children and their families within four pilot authorities in England and Wales. Drawing on interviews and questionnaires with 16 social workers and 22 families experiencing assessment/reviews under the new ICS, this paper suggests that important questions and concerns regarding the appropriateness and usefulness for disabled children of the ICS remain, especially the use of 'standardized' exemplars. Five disability‐specific areas of concern are identified, and their implications are considered.

A literature review was carried out to establish what evidence exists about disabled children's participation in decision‐making, both regarding their own lives and about the shape of service delivery. There is evidence that disabled children hold and can express views, given the right environment. However, participation of disabled children needs further development. Measures proposed include addressing organisational systems so that they promote participation, extending advocacy services, the adoption of inclusive approaches and staff training, plus education and information for disabled children and their parents. There remain significant gaps in the research evidence available.

Increasing attention is being paid to involving users in local NHS service development, and to involving young people as users in their own right. However, we know little about the views and experiences of young participants, especially those with a chronic illness or physical disability, which could inform more effective approaches to their involvement. The paper reports on research investigating the views of young patients and staff who have taken part in NHS service development projects, and suggests a range of issues for consideration when involving young patients in future. Copyright © 2002 John Wiley & Sons, Ltd.

Many discourses surround the concept of 'service quality', however, it continues to remain partial and ambiguous. This paper seeks to unpack 'quality' in services for disabled children and their families. Theoretical models are initially reviewed and then considered in relation to key policy guidelines, empirical data drawing upon parents' and children's experiences of 'quality' in services are presented. This paper demonstrates the many different levels within the concept of 'quality' and highlights the importance of recognising and respecting that children and parents frequently value different aspects of 'quality'. Copyright © 2001 John Wiley & Sons, Ltd.

Changes over time in the pattern of behaviour problems shown by 91 children with Down's syndrome, together with maternal appraisal of the seriousness of reported problems, were investigated through questionnaires completed by mothers. Fifty‐four individual behaviours were studied at mean ages 9 years 2 months and 13 years 9 months. There was a significant decline in the overall frequency of behaviour problems and in some disturbed behaviours, sleeping and toileting problems, and over‐activity. Only one problem‐lying‐became more common. However, many problems were found to be persistent among the same children.While mothers viewed relatively few behaviours as definite problems, a minority faced a multiplicity of perceived problems at both points in time. Running away was a common problem which particularly concerned mothers. Sleeping problems were generally seen as less problematic by Time 2, while stealing had become more so. Some individual problems were associated with the gender, age and developmental level of the children. Results suggest that behaviour problems may become set relatively early in life, and that families may benefit from help in preventing and dealing with problems well before the teenage years.

To date, little attention has been paid to the appropriateness of the Every Child Matters (ECM) outcomes framework to disabled children.1 This article reports findings from a research project which sought the views of disabled children and their parents about their desired outcomes. Twenty‐nine children and 90 parents were interviewed. The findings indicate that ECM outcomes are appropriate to disabled children but can have different meanings. In addition, the need to recognise the importance of maintaining outcomes, as well as progress, is highlighted.

Education policy favouring 'inclusion', together with medical advances, mean that a growing number of pupils in mainstream schools may have health‐related support needs in respect of a chronic illness or physical disability. Data from an empirical research study investigating these needs and carried out between 1996 and 1998 are used to reflect on the position of this group of pupils within policy guidance on special educational needs (SEN) and medical needs. Evidence of confusion and ambiguity, both in the guidance and its interpretation, suggests that the needs of this group remain somewhat hidden. More recent developments in special needs policy guidance are discussed in terms of the prospect for strengthening support for this group of pupils. Copyright © 2001 John Wiley & Sons, Ltd.

This study reports the findings from 68 interviews with parents of disabled children who are users of seven key worker schemes in England and Wales. The interviews which lasted for one hour each, were tape‐recorded, transcribed and analysed according to both a priori and emerging themes. The findings from this study have implications for policy and practice, for example, the necessity of protected time for key workers, the necessity of conveying clear information about the key worker's role, the importance of access to training and information for the key worker, the need for key workers to be proactive, and for their involvement in care plan and review meetings. Copyright © 2006 The Author(s). Journal compilation © 2006 National Children's Bureau

This paper examines the sleep disruption experienced by 36 families of technology‐dependent children living at home in the United Kingdom. The paper begins with an overview of the qualitative study in which parents' experiences of sleep disruption emerged as a major theme. We then describe the nature of and reasons for the sleep disruption, the help families received with care overnight, and the effects of sleep disruption on parents in particular. This is followed by discussion of the implications of the findings for policy and practice as well as future research.

Within children's services, frameworks for assessing outcomes have been developed in the absence of consultation with children with autistic spectrum disorders and their parents. The research reported here worked with parents, other key adults and children with autistic spectrum disorders to identify desired outcomes. It found similarities with non‐autistic children in terms of the broad types of outcomes desired. However, the presence of autism meant either new or different sorts of outcomes were reported. Implications in terms of the ways outcomes for autistic children are defined and measured, and the role of services in achieving outcomes is discussed. © 2006 The Author(s).

ABSTRACTThe families of 118 children with Down's syndrome, aged from six to fourteen years, took part in a study which sought to clarify the relationships between a large number of descriptor variables and a range of child and parental outcome measures. Previous studies had suggested that socio‐economic factors may be related to both child and parental outcomes, and a number of such variables were included in the present study.By using multiple regression analysis, it was possible to discriminate between single variable associations and those which remained significant when other associated variables were taken into account. In this way, parental educational qualifications were found to be associated with the children's IQ and mental age scores, and with the extent to which they participated in organised activities. Social class was related to the extent of the children's play contacts and to changes in their mental age scores. More specific aspects of social and economic disadvantage, such as inadequate housing and finance, unemployment, and lack of a car, were related to child behaviour problems and to measures of parental stress and satisfaction. Mothers in manual social classes were more likely to have increasing levels of stress.The implications of these findings for service providers are discussed.