Evaluation of the revised Nipissing District Developmental Screening (NDDS) tool for use in general population samples of infants and children.

BACKGROUND: There is widespread interest in identification of developmental delay in the first six years of life. This requires, however, a reliable and valid measure for screening. In Ontario, the 18-month enhanced well-baby visit includes province-wide administration of a parent-reported survey, the Nipissing District Developmental Screening (NDDS) tool, to facilitate early identification of delay. Yet, at present the psychometric properties of the NDDS are largely unknown. METHOD: 812 children and their families were recruited from the community. Parents (most often mothers) completed the NDDS. A sub-sample (n = 111) of parents completed the NDDS again within a two-week period to assess test-retest reliability. For children 3 or younger, the criterion measure was the Bayley Scales of Infant Development, 3rd edition; for older children, a battery of other measures was used. All criterion measures were administered by trained assessors. Mild and severe delays were identified based on both published cut-points and on the distribution of raw scores. Sensitivity, specificity, positive and negative predictive values were calculated to assess agreement between tests. RESULTS: Test-retest reliability was modest (Spearman's rho = .62, p < 001). Regardless of the age of the child, the definition of delay (mild versus severe), or the cut-point used on the NDDS, sensitivities (from 29 to 68 %) and specificities (from 58 to 88 %) were poor to moderate. CONCLUSION: The modest test-retest results, coupled with the generally poor observed agreement with criterion measures, suggests the NDDS should not be used on its own for identification of developmental delay in community or population-based settings.

Health-related quality of life of children with physical disabilities: a longitudinal study.

BACKGROUND: Outcomes of health and rehabilitation services for children and youth with disabilities increasingly include assessments of health-related quality of life (HRQoL). The purpose of this research was to 1) describe overall patterns of HRQoL, 2) examine changes in parent's perceptions of child's HRQoL across 18 months and 3) explore factors that predict these changes. METHODS: Participants in this study included 427 parents of children (229 boys and 198 girls) with a physically-based disability between the ages of 6 to 14 years. The Child Health Questionnaire (CHQ) was administered three times, at nine month intervals. Comparisons to the CHQ normative data were analyzed at Time 1 using t-tests, and change over time was examined using linear mixed-effects models. Possible predictors were modeled: 1) child's factors measured by the Activities Scale for Kids, Strengths and Difficulties Questionnaire, and general health measured by SF-36, 2) family characteristics measured by the Impact on Family Scale and 3) environmental barriers measured by the Craig Hospital Inventory of Environmental Factors. RESULTS: CHQ scores of the study's participants demonstrated significantly lower summary scores from the normative sample for both CHQ Physical and Psychosocial summary scores. On average, children did not change significantly over time for physical summary scores. There was an average increase in psychosocial health that was statistically significant, but small. However, there was evidence of heterogeneity among children. Environmental barriers, behavioral difficulties, family functioning/impact, general health and child physical functioning had negative and significant associations with physical QoL at baseline. Change in physical QoL scores over time was dependent on children's behavioral difficulties, family functioning and environmental barriers. Environmental barriers, behavioral difficulties, family functioning/impact and general health had significant associations with psychosocial scores at baseline, but none served as predictors of change over time. CONCLUSIONS: Children with physical disabilities differ from the normative group on parent ratings of their physical and psychosocial health. While there was little average change in CHQ scores over 18 months, there is evidence of heterogeneity among children. Factors such as environmental barriers, family functioning/impact, child physical functioning and behavioral difficulties and general health significantly influence QoL scores as measured by the CHQ.

Psychometric evaluation of the dutch version of the assessment of preschool children's participation (APCP): construct validity and test-retest reliability.

The aim of this study is to examine construct validity, internal consistency, and test-retest reliability of the Dutch translation of the Assessment of Preschool Children's Participation (APCP) a participation measure for children aged 2 to 5 years and 11 months with and without physical disabilities. Parents of 126 preschool children participated. Sixty-seven of the children had no physical disabilities (mean age three years two months, SD 1.2) and 59 children had physical disabilities (mean age two years nine months, SD 1.8). Validity was tested using three hypotheses regarding having a physical disability, gender and age differences. Most, but not all hypotheses were confirmed. Children with a physical disability participated in fewer activities and with lower intensity than children without physical disabilities (p < .001). Boys and girls participated in an equally wide variety of activities and with similar intensity except for skill development. Four- to five-year-old children in general participated in more activities than two- to three-year-old children and had a higher intensity score (p < .001). For activity types, age differences were found for skill development (p < .001) and social activities (p < .001). Internal consistency was sufficient for four out of 10 activity types. Intra Class Correlations for test-retest reliability ranged from 63 to .91. Our findings indicate that the Dutch APCP shows sufficient psychometric properties for some but not all aspects of the measure.

The assessment of preschool children's participation: internal consistency and construct validity.

Participation in activities provides the means for young children to learn, play, develop skills, and develop a sense of personal identity. The Assessment of Preschool Children's Participation (APCP) is a newly developed measure to capture the participation of children aged 2 to 5 years and 11 months in the areas of play, skill development, active physical recreation, and social activities. Data from a clinical trial involving 120 children with cerebral palsy indicated that the APCP has moderate to very good internal consistency. The measure distinguishes between children below or above 4 years of age across levels of the Gross Motor Classification System, and between income levels below or above the median regional income range. The APCP, with a focus on preschool children, has potential use for assessment and identification of activity areas in which the child is participating and areas in which participation may be restricted.

Features and impacts of five multidisciplinary community-university research partnerships.

Despite the increasing number of multidisciplinary community-university research partnerships designed to address real-world issues, little is known about their nature. This article describes the features and impacts of five research partnerships addressing health or social service issues, which constituted a convenience sample from the province of Ontario, Canada. The article describes their characteristics, ways of operating, outputs, types of requests received from community members and mid-term impacts. Requests directed to partnerships were tracked over a 10-month period in 2003 to 2004, using a research contact checklist, and 174 community members later completed an impact questionnaire capturing perceptions of the impacts of the partnerships on personal knowledge and research skill development, organisational/group access to and use of information, and community and organisational development. The data indicated that partnerships had similar priorities and magnitudes of mid-term impacts, yet differed in the scope of their partnering, realm of intended influence and the number of mechanisms used to engage and communicate with target audiences. The partnerships produced different types of outputs and received different types of requests from community members. The findings inform researchers about partnership diversity and help to establish more realistic expectations about the magnitude of partnerships' impacts.

A measure of community members' perceptions of the impacts of research partnerships in health and social services.

Currently, there are no psychometrically sound outcome measures by which to assess the impacts of research partnerships. This article describes the development of a 33-item, survey questionnaire measuring community members' perceptions of the impact of research partnerships addressing health or social issues. The Community Impacts of Research Oriented Partnerships (CIROP) was developed using information from the literatures on health promotion, community development, research utilization, and community-based participatory research, and from focus groups involving 29 key informants. Data from 174 community members were used to determine the factor structure, internal consistency, and test-retest reliability of the four CIROP scales, and to provide evidence of construct validity. The CIROP informs research partnerships about the extent of their impact in the areas of Personal Knowledge Development, Personal Research Skill Development, Organizational/Group Access To and Use of Information, and Community and Organizational Development, allowing them to demonstrate accountability to funding bodies. As well, the CIROP can be used as a research tool to assess the effectiveness of knowledge sharing approaches, determine the most influential activities of research partnerships, and determine structural characteristics of partnerships associated with various types of impact. The CIROP provides a better understanding of community members' perspectives and expectations of research partnerships, with important implications for knowledge transfer and uptake.

Measurement practices in pediatric rehabilitation: a survey of physical therapists, occupational therapists, and speech-language pathologists in Ontario.

We investigated measurement practices in pediatric rehabilitation. We conducted a survey of 63 physical, 72 occupational, and 74 speech-language therapists working in one of 16 children's rehabilitation programs in Ontario, Canada. Therapists were surveyed about their measurement practices, and their confidence, beliefs, and attitudes about measurement. Results showed that standardized clinical measures were used frequently, but were often modified. Clinicians rated themselves as least comfortable with statistical concepts related to the uncertainty in test scores, and rated factors related to finding appropriate measures as the most important influences on their measurement practices. Some variance in measurement attitudes and practices was associated with treatment centre of practice, suggesting that there may be organizational or peer influences on measurement behaviour. The results have implications for continuing education, measurement development, and interventions designed to facilitate sound measurement practices.

Patterns of participation in recreational and leisure activities among children with complex physical disabilities.

Children with physical disabilities are at increased risk of limitations to participation in everyday activities. This study describes research examining the participation of children in day-to-day formal and informal activities (excluding mandated academic schooling). Using the Children's Assessment of Participation and Enjoyment (CAPE) measure, data on participation patterns were collected from 427 children (229 males, 198 females; mean age 10 y [SD 2 y 4 mo]; range 6-14 y) with physical limitations and from their families. The primary types of physical disability in the sample included cerebral palsy, spina bifida, acquired brain injury, and musculoskeletal limitations. Findings indicate a broad range of diversity and intensity of participation, with proportionately greater involvement in informal rather than formal activities. Significant differences in participation and enjoyment were found between males and females, and for children more than 12 years of age. Children's participation was less diverse in families reporting lower income, single-parent status, and lower respondent parent education. These findings provide a foundation for an improved understanding of the participation of children with physical disabilities, which can assist families and service providers in planning activities that fit with their child's preferences and ensure active participation.

A conceptual model of the factors affecting the recreation and leisure participation of children with disabilities.

Participation in everyday activities is considered to be a vital part of children's development, which is related to their quality of life and future life outcomes. Research studies indicate that children with disabilities are at risk for lower participation in ordinary activities at home and in the community. This article presents a conceptual model of 11 environmental, family, and child factors that are thought to influence children's participation in recreation and leisure activities. The article outlines the existing evidence for the influence of these factors on one another and on children's participation. The review encompasses four bodies of literature: the participation of children or adults with disabilities, the risk and resilience of children facing adversity, the determinants of leisure and recreation activities, and the factors influencing physical activity and exercise. The proposed model is expected to be a useful tool for guiding future research studies and for developing policies and programs for children with disabilities and their families.