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.
Background
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.
Purpose
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.
Methods
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.
Results
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.
Conclusion
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 present article reviews the current situation with respect to curriculum structure and trends in research on curriculum studies in the area of education for children with multiple disabilities. ...After the curriculum was revised in 1971, many studies examined education for individual children with multiple disabilities who had various conditions. Most of those articles reported case studies relating to understanding children with multiple disabilities who can barely move, and to attempts to change the behavior of children with multiple disabilities by educational practice. However, few studies have been done on the design of curriculum for these children. Teachers of children with profound and multiple disabilities are uncertain about how to plan their teaching, which suggests that this might reflect a limit to "child-centered" education. When curriculum management was regarded as important, curriculum studies had to recognize commonalities between regular education and special needs education. The present results suggest that it may be necessary to investigate and construct curriculum for children with multiple disabilities in cooperation with schools and agencies that are conducting research on school-based curriculum development.
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