Participation of disabled children and young people in decision making within social services departments: A survey of current and recent activities in England

A survey of all social services departments in England was undertaken in order to identify and investigate current work concerning the participation of disabled children within decision making regarding their own care and in service development. Developing a culture of, and good practice in, children's participation is integral to government policy. Results demonstrate that disabled children are being involved in a range of decision-making areas; however, participation is not yet embedded or sustained across all social services departments, and the involvement of disabled children at a higher strategic level is still rare. The participation of disabled children needs further development including more evidence on which factors can support and promote disabled children's effective participation

Listening and responding? Children's participation in health care within England

This article examines recent health policy developments in England in relation to children's rights under Article 12 and 13 of the United Nations Convention on the Rights of the Child (UNCRC). It draws on practice and research literature to explore evidence regarding: children's participation both within decisions about their own care and concerning the development of health services, their access to mechanisms that allow them a voice, the provision of and need for accessible information, and factors which prevent or facilitate children's participation. The paper does not explore in detail issues concerning children's consent or competence to participate

The stability of the ways of coping (revised) questionnaire over time in parents of children with Downs-Syndrome:a research note

The stability of the Ways of Coping (Revised) Questionnaire over time was assessed by comparing the scores of 68 mothers and 53 fathers of school-aged children with Down's syndrome over a 3-year time interval on the five coping strategy subscales described by Knussen et al. (1992). For this analysis, mothers' and fathers' scores were analysed separately. It was shown by t tests that mothers' and fathers' scores on the coping strategy subscales had not significantly changed over the three-year period. Time 1 and Time 2 scores on all of the coping subscales were strongly positively associated, with the exception of fathers' scores on the Stoicism subscale. Test-retest reliability was adequate for all subscales except mothers' scores on the Passive Acceptance subscale and fathers' scores on the Stoicism subscale. These results, by demonstrating the stability of the Ways of Coping (Revised) Questionnaire over a 3-year time period, further illustrate the utility of this instrument for investigating coping in families with special problems

'Making Choices in my Life': Listening to the ideas and experiences of young people in the UK who communicate non-verbally

Service user participation and making choices are frequently advocated, however, they are complex concepts and how they are translated and/or experienced in everyday life can vary amongst different groups of service users. Recognising the importance of participation in current international guidance and UK government policy this paper seeks to explore how research can include a frequently marginalised group of disabled young people, in particular young people with learning disabilities and/or who communicate non-verbally. The paper discusses the use of non-traditional research methods, especially symbols based interviews developed in an ongoing English longitudinal study exploring choices and decision-making processes for young people with life limiting conditions. The paper then presents some research findings and concludes by discussing their implications. In particular, the use of symbols based interviews for informing policy makers about how these young people can be included in research and how listening to them can inform our understanding of decision-making processes

Survey of psychosocial support provided by UK paediatric oncology centres

Aim: To obtain a comprehensive overview of current patterns of psychosocial support provided by National Health Service ( NHS) paediatric oncology treatment centres across the UK. Methods: A postal questionnaire was sent to co-ordinators in the UK Children's Cancer Study Group ( a professional body that is responsible for the organisation of treatment and management of childhood cancer in the UK) in 21 treatment centres and three separate Teenage Cancer Trus units. A range of psychosocial topics were explored, including ratio of staff providing support to patients; facilities provided for children and families; psychosocial support services such as support groups; information provision; and transition support. Results: There were many good areas of support provided by centres, but there was also a lack of standard practices and procedures. All centres employed social workers, play specialists, and paediatric oncology outreach nurses, but patient to staff ratios varied across centres. The poorest staff provision was among psychologists, where patient to staff ratios ranged from 132:1 to 1100:1. Written information was standard practice, while provision of other types of information (audiovisual, online) varied; none of the centres provided audio information specifically for children/young people. Conclusion: This variability in practices among centres frequently occurred, as centres rarely had procedures formally agreed or recorded in writing. British government policy currently seeks to develop standards and guidelines of care throughout the National Health Service. This study further demonstrates the importance of standards and the need to agree guidelines for the provision of psychosocial support for children/young people and their families throughout the course of the illness

The views of young people with congenital cardiac disease on designing the services for their treatment

Background and purpose: There is little documented evidence of young people with congenital cardiac disease being consulted as to what help, if any, they really need in relation to their condition. Most research concentrates on the medical aspects of the condition. There are studies of psychological and social functioning, but few have directly sought the opinions of the young people. More recent research has indicated a need for health professionals to develop services to meet both psychosocial and physical needs of young people with congenital cardiac disease. The findings of the recent Kennedy Report support this need. The purpose of this study was to explore the views of young people with a range of congenital cardiac conditions, on what would help them better deal with their condition, and when and how help might be provided. Methods: This was a qualitative study using semi-structured interviews. We interviewed 16 young people in their own home. Interviews were tape-recorded and transcribed. Analysis was conducted using the "Framework" method. Results: Whilst most of the young people interviewed actively manage their condition, they think more support from others would be beneficial. Issues of activity and communication were cited most often as areas requiring more understanding from people they interact with, for example teachers and peers. The discussion focuses on how health professionals might change or develop their practice to help young people better cope with their condition. Conclusions: Most of the young people interviewed in this study had developed their own strategies for coping with their condition. Although this is a small study, the young people provided important suggestions as to how health professionals could better develop current services

A simple screening method for determining knowledge of the appropriate levels of activity and risk behaviour in young people with congenital cardiac conditions

Objective: To assess a novel method for assessing risk and providing advice about activity to children and young people with congenital cardiac disease and their parents. Design and setting: Questionnaire survey in outpatient clinics at a tertiary centre dealing with congenital cardiac disease, and 6 peripheral clinics. Interventions: Children or their parents completed a brief questionnaire. If this indicated a desire for help, or a serious mismatch between advised and real level of activity, they were telephoned by a physiotherapist. Main measures of outcome: Knowledge about appropriate levels of activity, and identification of the number exercising at an unsafe level, the number seeking help, and the type of help required. Results: 253/258 (98.0%) questionnaires were returned, with 119/253 (47.0%) showing incorrect responses in their belief about their advised level of exercise; 17/253 (6.7%) had potentially dangerous overestimation of exercise. Asked if they wanted advice 93/253 (36.8%) said “yes”, 43/253 (17.0%) “maybe”, and 117/253 (46.2%) “no”. Of those contacted by phone to give advice, 72.7% (56/77) required a single contact and 14.3% (11/77) required an intervention that required more intensive contact lasting from 2 up to 12 weeks. Of the cohort, 3.9% (3/77) were taking part in activities that put them at significant risk. Conclusions: There is a significant lack of knowledge about appropriate levels of activity, and a desire for further advice, in children and young people with congenital cardiac disease. A few children may be at very significant risk. These needs can be identified, and clinical risk reduced, using a brief self-completed questionnaire combined with telephone follow-up from a suitably knowledgeable physiotherapist

Provision of services for rehabilitation of children and adolescents with congenital cardiac disease: a survey of centres for paediatric cardiology in the United Kingdom

A postal questionnaire survey of the 17 centres for paediatric cardiology in the UK investigated the attitudes of staff towards rehabilitation and the current level of provision. The majority of respondents (82%) believed they should provide rehabilitation for their patients, but only one centre had a programme for rehabilitation. Few respondents (18%) believed they were meeting the needs of their patients' for rehabilitation. Major barriers to providing rehabilitation were funding and the wide geographical catchment areas

The views of parents concerning the planning of services for rehabilitation of families of children with congenital cardiac disease

Background and purpose: Although much previous research has focused on the medical aspects of congenital cardiac disease, there is a growing body of research which suggests that families may need help and support with the wider issues associated with the medical condition. We have previously ascertained from young people with congenital cardiac disease their views on this subject. The purpose of this study was to obtain the views of their parents about the need for, and shape of, services for rehabilitation. Methods: This was a qualitative study using semi-structured interviews. We interviewed 17 parents in their own home. Interviews were tape-recorded and transcribed. Results: Parents would welcome more help and support from health professionals to enable them to manage more effectively the condition with their children. Particular areas of concern relate to the information they receive about the condition; communication between themselves and health professionals; establishing safe levels of activity; and managing the condition at school. Conclusions: This is a small study of the experiences and views of parents, which provides some important information on ways in which health professionals. could address the current lack of services for rehabilitation

Error management in ATLAS TDAQ : an intelligent systems approach

This thesis is concerned with the use of intelligent system techniques (IST) within a large distributed software system, specifically the ATLAS TDAQ system which has been developed and is currently in use at the European Laboratory for Particle Physics(CERN). The overall aim is to investigate and evaluate a range of ITS techniques in order to improve the error management system (EMS) currently used within the TDAQ system via error detection and classification. The thesis work will provide a reference for future research and development of such methods in the TDAQ system. The thesis begins by describing the TDAQ system and the existing EMS, with a focus on the underlying expert system approach, in order to identify areas where improvements can be made using IST techniques. It then discusses measures of evaluating error detection and classification techniques and the factors specific to the TDAQ system. Error conditions are then simulated in a controlled manner using an experimental setup and datasets were gathered from two different sources. Analysis and processing of the datasets using statistical and ITS techniques shows that clusters exists in the data corresponding to the different simulated errors. Different ITS techniques are applied to the gathered datasets in order to realise an error detection model. These techniques include Artificial Neural Networks (ANNs), Support Vector Machines (SVMs) and Cartesian Genetic Programming (CGP) and a comparison of the respective advantages and disadvantages is made. The principle conclusions from this work are that IST can be successfully used to detect errors in the ATLAS TDAQ system and thus can provide a tool to improve the overall error management system. It is of particular importance that the IST can be used without having a detailed knowledge of the system, as the ATLAS TDAQ is too complex for a single person to have complete understanding of. The results of this research will benefit researchers developing and evaluating IST techniques in similar large scale distributed systems