Summary Introduction Although sleep disturbances in disabled children are of central clinical importance, there is little research on that topic. There are no data available on frequency, severity or ...aetiology of sleep disturbances and related symptoms in this specific patient group. Objective To review the current state of research and outline future research objectives. Methods We searched international scientific databases for relevant publications from 1980-2009. From all papers qualifying for further analysis we retrieved systematic information on sample characteristics, sleep assessment tools and their test quality criteria, and core findings. Results 61 publications including 4392 patients were categorized as “mixed” (reporting on heterogeneous diagnoses), or “specified” papers (specific diagnoses) based on international classification of diseases (ICD) 10 classification. To assess sleep disturbances, most authors relied on subjective instruments with poor psychometric quality. Mean prevalence of sleep disturbances was 67% (76%,“mixed” group; 65%, “specified” group). In children suffering severe global cerebral injury, the prevalence of sleep disturbances was even higher (>90%). The most frequent symptoms were insomnia and sleep-related respiratory disorders. Some of these symptoms were closely associated with specific medical syndromes. Conclusion There is an urgent need for sleep disturbance assessment tools evaluated for the patient group of interest. By use of validated assessment tools, patient factors, which may be crucial in causing sleep disturbances, may be investigated and appropriate treatment strategies may be developed.
Currently, paediatric health care aims to use a child-centred tailor-made approach. In order to design tailored occupational therapy, the implementation of personalised occupation-based measurements ...that guide and evaluate goal setting and are responsive to change is necessary.
Primarily, this study explored the potential of the Perceive, Recall, Plan, and Perform (PRPP) assessment to measure the change in the performance of children with multiple disabilities. As a secondary evaluation, the feasibility of the PRPP-Intervention in a home-based program to enable activities was described. The overall aim is to show the potential of the PRPP-Assessment as an outcome measure to use as a base for designing tailor-made person-centred care.
An exploratory longitudinal multiple case series mixed-methods design was used. The PRPP-Assessment, scored by multiple raters, was conducted based on parent-provided videos. The assessed activities were chosen by the child and/or parents. Responsiveness was evaluated by hypotheses formulated a priori and by comparing measured change with change on concurrent measures: Goal Attainment Scaling (GAS) and Canadian Occupational Performance Measure (COPM). Over a 6-week period, children and their parents (or caregivers) participated in an online home-based video coaching program where parents were coached in the implementation of the training, based on the PRPP-Intervention, by paediatric occupational therapists on a weekly basis. The feasibility of the intervention was explored using semi-structured interviews with children, parents, and the treating occupational therapists and was analysed by directed content analysis.
Three out of 17 eligible children agreed to participate and completed post-intervention measurement, of which two completed the intervention. Quantitative results showed that eight out of nine activities improved on the PRPP-Assessment and the COPM, and nine improved on the GAS. In total, 13 out of 15 hypotheses for responsiveness were accepted. Participants experienced the intervention as successful and acceptable. Facilitators and concerns over demand, implementation, practicality, integration, and adaptation were shared.
The PRPP-Assessment showed the potential to measure change in a heterogeneous group of children. The results indicated a positive tendency for the intervention and also provide directions for further development.
With a focus on children with multiple disabilities (CMD), the purpose of this quality improvement project was to elevate educational measurement and practices involving CMD. Using the goal ...attainment scaling (GAS) methodology, this project was conducted within a public charter school, Pattison’s Academy for Comprehensive Education (PACE), focusing on 31 CMD and measuring student improvement and program effectiveness. For 2010–2011 and 2011–2012, improvements were demonstrated for the majority of CMD by meeting or exceeding their goals. Goal attainment scaling was able to capture improvement in educational and rehabilitation goals in the majority of CMD. Goal attainment scaling can provide an indication of a program’s effectiveness. The use of GAS in CMD has potential to maximize participation across the school setting where all children in the United States commonly develop and learn skills as well as find meaning.
We drew types and grasped the situation of each type at medical type facilities for children with disabilities in Japan. The purpose of this study is to extract typical facilities from the derived ...types, and to clarify the characteristics of the types with the attributes that the degree of disability of children is severe. We investigated four aspects: (1) Capacity of facilities, the number of children and adults, and major disabilities and severity of disabilities for children. (2) Clarify the characteristics of each type. (3) Characteristics of typical facilities for each extracted type.
We drew types and grasped the situation of each type at medical type facilities for children with disabilities in Japan. The purpose of this study is to extract typical facilities from the derived ...types, and to clarify the characteristics of the types with the attributes that the degree of disability of children is severe. We investigated four aspects: (1) Capacity of facilities, the number of children and adults, and major disabilities and severity of disabilities for children. (2) Clarify the characteristics of each type. (3) Characteristics of typical facilities for each extracted type.
This paper presents work on developing methodology material for use of gaze controlled computers. The target group is families and professionals around children with severe multiple disabilities. The ...material includes software grids for children at various levels, aimed for communication, leisure and learning and will be available for download.
The existing methods of interaction between children with multiple disabilities and toys are complex, expensive and few promote the rehabilitation process. Thus Faculty of Science and Technology, New ...University of Lisbon (FCT) and the Center for Physical Medicine and Rehabilitation of Alcoito (CMFRA) joined forces to develop a platform that we hope represents a significant contribution to fill this gap. The aim of the paper is to create a platform that consists of a PDA and two types of interaction modules; one capable of receiving inputs form switches, and retransmit them to the PDA; another capable of interpreting signals sent by the PDA and produce variations of outputs, that connected, for example to adapted toys, can enable or disable them. These modules can improve the way that children, with multiple disabilities, play; because even small stimuli from the child can generate complex interactions of toys. These modules can be used for apps specifically designed for the children and for their rehabilitation process, therefor expanding the area of interaction of the PDA, improving accessibility, and ludic approach. The platform meets the established criteria of the clinicians of CMFRA and will be adopted as a tool by them. We created a platform that improves significantly the mode of playing for children with multiple disabilities and facilitates their rehabilitation process.
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