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Background This article presents findings from the development and evaluation of The KIT: Keeping It Together ™ for Y outh (the ' Youth KIT'). The Youth KIT is a resource intended to assist youth with disabilities during their teenage years and during the transition to adulthood to give information to others about themselves, get from others about themselves, and organize their own information to the best of their ability. Methods Thirty-six youth between the ages of 12 and 25 with physical and developmental disabilities were active participants in the development of the Youth KIT and partnered with a multidisciplinary team to conduct the qualitative evaluation. Focus groups and individual interviews were used in three phases of evaluation. Results The results of qualitative content analysis found the Youth KIT to be useful for a variety of youth in different contexts. The themes that emerged about the utility and impact of the Youth KIT were: (1) self-discovery for youth; and (2) the importance of the 'fit' between youth and mentors to support youth as they started to use the Youth KIT. Conclusion Clinical implications for healthcare providers working with youth during the transition to adulthood include recognition that discussions about adult goals should be a continuous dialogue throughout adolescence rather than a 'special' conversation occurring at the time of discharge from paediatric services. [ABSTRACT FROM AUTHOR]

Background The Child's Challenging Behaviour Scale ( CCBS) was designed to measure a mother's rating of her child's challenging behaviours. The CCBS was initially developed for mothers of school-aged children with developmental disability and has previously been shown to have good psychometric properties using classical test theory techniques. The aim of this study was to use Rasch analysis to fully evaluate all aspects of the scale, including response format, item fit, dimensionality and targeting. Methods The sample consisted of 152 mothers of a school-aged child (aged 5-18 years) with a disability. Mothers were recruited via websites and mail-out newsletters through not-for-profit organizations that supported families with disabilities. Respondents completed a survey which included the 11 items of the CCBS. Rasch analysis was conducted on these responses using the RUMM2030 package. Results Rasch analysis of the CCBS revealed serious threshold disordering for nine of the 11 items, suggesting problems with the 5-point response format used for the scale. The neutral midpoint of the response format was subsequently removed to create a 4-point scale. High levels of local dependency were detected among two pairs of items, resulting in the removal of two items (item 7 and item 1). The final nine-item version of the scale ( CCBS Version 2) was unidimensional, well targeted, showed good fit to the Rasch model, and strong internal consistency. Conclusions To achieve fit to the Rasch model it was necessary to make two modifications to the CCBS scale. The resulting nine-item scale with a 4-point response format showed excellent psychometric properties, supporting its internal validity. [ABSTRACT FROM AUTHOR]

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 utilization 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 organized through childhood to enhance benefits to children with CP across activity limitation profiles. [ABSTRACT FROM AUTHOR]

This study described the process used in developing an outcome measurement framework for system planning to improve services for children and youth with special needs and their families in a Canadian province. The study reports the results of several parent-completed measures, which would be useful in service planning as well as the acceptability and utility of these measures for use by families and service centres. Methods/results Development of a theoretical framework, consultation with key stakeholders, testing the utility of selected outcome measures and initial dissemination of results were critical elements in the successful development of an outcome system. Consultation with stakeholders confirmed use of the International Classification of Functioning, Disability and Health and the child-within-family-within community model as theoretical frameworks while building valuable partnerships and identifying potential barriers to implementation. Pilot testing showed three outcome measures were feasible for families to complete and the measures provided information about services for children that was valuable to families as well as service providers. Gaps in service delivery were identified and the need for better communication between service providers and communities to facilitate integrated services was highlighted. Conclusion The findings from this study can be used to implement an outcome measurement system for children with special needs and may serve as a resource for international researchers who are working to develop valid tools as well as outcome systems that are useful for system planning. [ABSTRACT FROM AUTHOR]

Background We compared school participation patterns of students ages 5-17 with and without disabilities and examined whether features of the school environment were perceived to help or hinder their participation. Methods Parents ( n = 576) residing in the USA and Canada completed the Participation and Environment Measure for Children and Youth ( PEM-CY) via the internet. Results Parents of students with disabilities reported that their children participated less frequently in school clubs and organizations and getting together with peers outside the classroom and that they were less involved in all school activities. Parents of students with disabilities also were significantly more likely to report that features of the environment hindered school participation and that resources needed to support their child's participation were not adequate. Conclusions Parents of students with disabilities report that their children are participating less in important school-related activities. Barriers limiting school participation include features of the physical and social environment as well as limited resources. [ABSTRACT FROM AUTHOR]

Background Children with disabilities and their families experience environmental barriers in the school and community environments. There is a need to understand and appropriately measure environmental factors that influence activity and participation for disabled children. The purpose of this paper is to describe the adaptation process of the Craig Hospital Inventory of Environmental Factors (CHIEF) to make it suitable as a parent proxy measure for disabled children aged 2-12 years. Methods The adaptation process consisted of four steps using data from previous research conducted at CanChild: (i) analysis of item-total correlations from all items on the CHIEF; (ii) frequency of endorsement; (iii) determination of the representativeness of the questions; and (iv) correlations on selected items. Once the items were selected, a test-retest reliability study was conducted. Results The internal consistencies (α) for the time 1 and time 2 administrations were 0.76 and 0.78, respectively. Test-retest reliability of the questionnaire was ICC = 0.73 for the total product score. Conclusion The 10-item CHIEF for Children-Parent Version is an acceptable, easy-to-complete and reliable measure of perceived environmental barriers for disabled children 2-12 years of age. [ABSTRACT FROM AUTHOR]

Objective To determine out-of-school activity participation profiles of school-aged children with physical disabilities. Methods Activity participation profiles were determined by cluster analysing 427 children's responses on multiple dimensions of participation (intensity, location, companionship, enjoyment, preference) in five activity types (recreational, active physical, social, skill-based, self-improvement). Socio-demographic, child, parent, family and environmental predictors of group membership were determined, along with child functioning, socio-demographic, self-concept and social support variables significantly associated with group membership. Results The cluster analysis revealed four groups, labelled Social Participators (a highly social and neighbourhood-focused group), Broad Participators (a group of high participators who enjoy participation), Low Participators (a group with low enjoyment and weak preferences) and Recreational Participators (a group of younger children who participate in recreational activities with family members). The groups showed meaningful differences across a range of socio-demographic, child, parent, family and environmental variables. Conclusions The findings support an affective and contextual view of participation, indicating the importance of motivational theory and a person–environment approach in understanding the complexity of children's out-of-school activity participation. [ABSTRACT FROM AUTHOR]

Background Caring for a child with a disability can be especially difficult when the child exhibits challenging behaviours. Childhood disability often calls for the mother to be conscientious, capable and organized to meet the child's health and developmental needs. Mothers are known to feel particularly stressed when their child also behaves in ways that are difficult to manage. In these circumstances maternal mental health may be compromised and mothers therefore need more support. The Child's Challenging Behaviour Scale (CCBS) is an 11-item scale that measures a mother's report of challenging behaviours exhibited by their child with disability, that are associated with compromised maternal mental health and caregiving difficulties. This paper describes the initial development and psychometric evaluation of the CCBS. Methods A mixed methodology instrument design model was used to develop the CCBS. A qualitative study generated items, and quantitative data were collected from 152 mothers of a child with a disability. Results The CCBS showed excellent internal consistency (Cronbach's alpha = 0.89) and factor analysis supported its unidimensionality. Construct validity was supported by correlations with the PedsQL Psychosocial Health Summary Score (rho =−0.51) and cooperation taking medication (rho = 0.40). There were significant differences in CCBS scores between groups of children with and without either autism or psychiatric conditions. The CCBS showed moderate correlations with self-reported health status; the mother's sense of empowerment (rho =−0.44); and family cohesion (rho =−0.30). Mothers with a mental health condition recorded significantly higher CCBS scores. Conclusions The CCBS is a brief, psychometrically sound instrument that provides clinicians with a new tool that measures a mother's rating of their child's behaviours that are challenging and associated with reduced maternal well-being. The CCBS assists professionals to identify mothers and family situations who may be in need of more support and interventions. [ABSTRACT FROM AUTHOR]

Background There is a need to develop affordable but effective audiometric screening equipment, particularly for use in low-income countries. With advances in computer technology, low-cost computer-based audiometer software has been developed. However, the efficacy of computer-based audiometers in hearing screening and diagnostic assessment requires investigation. The purpose of this study was to evaluate the accuracy of a low-cost, computer-based audiometric system in a school-based hearing screening programme. Methods Eighty children were screened using the computer-based audiometer and with a conventional pure tone screening audiometer. Overall refer rates, as well as frequency and age effects on the accuracy of the computer-based audiometer, were considered. Results There was a significant relationship between the low-cost, computer-based audiometer and a conventional pure tone audiometer when a 40 dBHL refer criterion was used in school hearing screening and when test results at 500 Hz were excluded from analysis. However, background noise effects and software limitations in the computer-based system had major adverse effects on screening performance. Conclusions The study results and preliminary practical experience with the system suggest that, with further software and hardware improvements, a low-cost, computer-based system may well be feasible for routine school screening in developing countries. [ABSTRACT FROM AUTHOR]

Aim This paper describes the development and psychometric evaluation of the Assistance to Participate Scale (APS). The APS measures the assistance that a school-aged child with a disability requires to participate in play and leisure activities from the primary carer's perspective. Method Mixed methodology using an instrument design model was used to complete two studies. First, a qualitative research design was used to generate items and scoring criteria for the APS. Second, a quantitative study evaluated the instrument using data collected from 152 mothers with children aged 5–18 years. Statistical analysis assessed the underlying structure, internal consistency and construct validity of the APS. Results Exploratory factor analysis revealed two correlated components, reflecting home-based and community-based play activities. Both subscales and the total APS scale showed good internal consistency. The APS correlated as predicted with individual domains and overall scores for other validated measures (Pediatric Evaluation of Disability Inventory caregiver scales and Pediatric Quality of Life Inventory) with correlations ranging from rho = 0.42 to rho = 0.77. The APS was able to discriminate between groups of children based on type of schooling (regular or segregated), need for equipment/assistive devices, frequency of lifting and disability. Conclusions The APS provides professionals with a brief psychometrically sound tool that measures the amount of caregiver assistance provided to a child with a disability to participate in play and recreation. The APS may be used as an outcome measure and to evaluate and predict the amount and type of additional assistance families need to facilitate their child's participation in an important aspect of the child's daily life and development: play and recreation. [ABSTRACT FROM AUTHOR]

There is a need for psychometrically sound measures of children's participation in recreation and leisure activities, for both clinical and research purposes. This paper provides information about the construct validity of the Children's Assessment of Participation and Enjoyment (CAPE) and its companion measure, Preferences for Activities of Children (PAC). These measures are appropriate for children and youth with and without disabilities between the ages of 6 and 21 years. They provide information about six dimensions of participation (i.e. diversity, intensity, where, with whom, enjoyment and preference) and two categories of recreation and leisure activities: (i) formal and informal activities; and (ii) five types of activities (recreational, active physical, social, skill-based and self-improvement). This paper presents information about the performance of the CAPE and PAC activity type scores using data from a study involving 427 children with physical disabilities between the ages of 6 and 15 years. Intensity, enjoyment and preference scores were significantly correlated with environmental, family and child variables, in expected ways. Predictions also were supported with respect to differences in mean scores for boys vs. girls, and children in various age groups. The information substantiates the construct validity of the measures. The clinical and research utility of the measures are discussed. [ABSTRACT FROM AUTHOR]

Background Provision and use of information about their children is a major concern to families who have a child with a disability. Strategies or systems to influence parents’ abilities to receive, give and use information in a way that is satisfying to them have not been well validated. Methods This paper reports on the development and evaluation of a Parent Information KIT (‘Keeping It Together’) information management system and child advocacy tool. The KIT was designed to assist parents in giving, getting and organizing information in an effective way. The KIT was evaluated by a sample of 440 parents, with outcomes of use, utility, impact and perceptions of family-centred care measured at baseline, and after 6 months, and 15 months. Results Parents’ perceptions of their ability, confidence and satisfaction when using information improved significantly after using the KIT. Parents’ perceptions of care, as measured with the Measure of Processes of Care, also improved significantly in the areas of ‘Enabling/Partnership’ and ‘Providing General Information’. Parents’ ratings of the use and utility of the KIT were associated with increased impact and, in turn, predicted improved perceptions of care. Conclusion Parents who received and actively used the Parent Information KIT experienced significant increases in their perception of their ability and self-confidence in getting, giving and using information to assist their child with a disability. Strategies for improving the use of the KIT among parents are discussed. [ABSTRACT FROM AUTHOR]

Background With parents more involved in their child's day-to-day care, concepts of family-centred service (FCS) are increasingly adopted in children's health and rehabilitation service organizations. Methods In this paper, we report the results of a study to develop and evaluate educational materials for parents, service providers and health sciences students about FCS. The materials focus on the nature and philosophy of FCS, and the practical skills and systemic changes required for its implementation. Results Thirty-six participants (12 families, 12 service providers and 12 rehabilitation science students) were randomly assigned to receive one of the six FCS educational packages, each containing three FCS educational sheets. Participants’ ratings of the format and content, and the impact of the FCS Sheets were very high, with overall means above 5.0 on a 7-point scale. Using a mixed model analysis, we found significant differences in participants’ ratings of familiarity with the materials (students were less familiar than service providers). After statistical adjustment for familiarity, there were no significant differences between the groups or the packages on ratings of format and content or impact. Conclusions There were no significant differences in the way in which the participant groups rated the impact of the FCS Sheets and the specific packages did not have an effect on the participants’ ratings. The FCS educational materials, even those less familiar to participants, were rated highly on format and content, and impact. Results indicate that the material was perceived to be important to each group, and was formatted and written in a way that was easy to understand. This finding counters current recommendations in the knowledge transfer literature that suggest different versions should be written for different target groups. [ABSTRACT FROM AUTHOR]

To apply a programme logic model to evaluate the effectiveness of a new therapy service for children with special needs who were in transition from pre-school to kindergarten. A children's outpatient rehabilitation centre in Ontario, Canada. The short-term outcomes included parents’ perceptions of the transition process itself and the information they required, the children's skill development for the transition to kindergarten, and parents’ perceptions of services and satisfaction with resources. A combination of quantitative methods [Goal Attainment Scaling (GAS), Measure of Processes of Care (MPOC), Client Satisfaction Questionnaire (CSQ)] and qualitative interviews were used to evaluate both the process (‘ Outputs’) and outcomes (‘ Short-term objectives’) of the new therapy service. The children involved in the evaluation met or exceeded goals that were set by therapists and parents. Parents’ perceptions of, and satisfaction with, the new service were higher than the provincial average. Qualitative data from interviews with parents and service providers supported the findings from standardized measures, and provided suggestions for future service delivery. The programme logic model provided researchers and service providers a collaborative and systematic approach to conducting programme evaluation in a relatively short-time frame. It appears to be a useful option for evaluation of other children's services. [ABSTRACT FROM AUTHOR]

Abstract Background The provision of family-centred services (FCS) emphasizes a partnership between parents and service providers so that families are involved in every aspect of services for their child. There is evidence that providing FCS is associated with improvements in parents’ satisfaction with services, decreased parental stress, and positive child outcomes. Methods The purpose of this study was to examine factors that are most important in determining parent perceptions of the family centredness of care and parent satisfaction with service. A cross-sectional survey was completed by 494 parents, 324 service providers, and 15 CEOs from 16 organizations delivering children's rehabilitation services. Analyses were completed using a structural equation modelling approach. Results Survey return rates ranged from 77 to 94%. Findings indicate that the principal determinants of parent satisfaction with services are the family-centred culture at the organization and parent perceptions of FCS. Parent satisfaction with services was also influenced by the number of places where services were received and the number of health and development problems experienced by their child. Conclusion Parent satisfaction with services is strongly influenced by the perception that services are more family centred, fewer places where services were received and fewer health and development problems for their child. Ways in which organizations can improve satisfaction through carrying out family-centred behaviours are discussed. [ABSTRACT FROM AUTHOR]