Measuring participation in children with disabilities using the Assessment of Life Habits (original) (raw)
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Disabilities
Purpose: Collaboration between parents and professionals is essential to enable participation of children with disabilities. Participation is a widely researched topic in pediatric rehabilitation, and evidence for it providing opportunities for involvement and a sense of belonging in community and in larger society exists. There are, however, less research results on how collaboration builds participation pertaining to involvement in life situations. In collaboration with parents, therapists and teachers, the aim of the study was to describe factors that (a) promote and (b) prevent participation in life situations for school-aged children with disabilities, working towards participation in adulthood. Methods: The study applied a qualitative research design. The data was collected during the 2015–2016 academic year with five focus-group interviews by sampling procedure. The study involved five parents of children with disabilities, three therapists and two teachers. The research data...
Developmental medicine and child neurology, 2016
This review outlines a conceptual approach to inform research and practice aimed at supporting children whose lives are complicated by impairment and/or chronic medical conditions, and their families. 'Participation' in meaningful life activities should be an essential intervention goal, to meet the challenges of healthy growth and development, and to provide opportunities to help ensure that young people with impairments reach their full potential across their lifespan. Intervention activities and research can focus on participation as either an independent or dependent variable. The proposed framework and associated hypotheses are applicable to children and young people with a wide variety of conditions, and to their families. In taking a fresh 'non-categorical' perspective to health for children and young people, asking new questions, and exploring issues in innovative ways, we expect to learn lessons and to develop creative solutions that will ultimately benefit ...
Community Participation, Supports, and Barriers of School-Age Children With and Without Disabilities
Archives of Physical Medicine and Rehabilitation, 2013
Objective: To examine patterns of community participation and environmental factors that affect community participation for school-age children with and without disabilities. Design: Cross-sectional, descriptive, and exploratory study. Setting: Parents from the United States and Canada completed the main outcome measure online in their homes or communities. Participants: Parents (NZ576) reported on their children aged 5 to 17 years with disabilities (nZ282) and without disabilities (nZ294). Interventions: Not applicable. Main Outcome Measure: Participation and Environment Measure for Children and Youth. Results: Group differences in summary scores and many items were significant (P<.001). Children with disabilities participated less frequently, were less involved, and had less environmental support in the community than children without disabilities. Parents of children with disabilities desired more change in their child's participation than parents of children without disabilities. Effect sizes for summary scores were moderate to very large (n 2 p from .11e.40), with the largest group difference found in environment scores. Overall, the largest group differences in participation were in "unstructured physical activities" and "getting together with other children"dalso the 2 areas where parents of children with disabilities most frequently desired change. The largest differences in environmental impact were in physical, social, and cognitive activity demands and availability/adequacy of programs and services. Conclusions: Results provide insights about where greater efforts are needed to support community participation of school-age children with disabilities. Further study with a more diverse sample in terms of race/ethnicity, family income/education levels, and geographic region is needed to determine the extent to which results may be generalized. Archives of Physical Medicine and Rehabilitation 2013;94:315-23 ª 2013 by the American Congress of Rehabilitation Medicine Participation in activities that provide a sense of accomplishment and enjoyment during childhood and youth helps to foster positive development into adulthood. 1-5 Participation has been shown to be an indicator of overall health and well-being across the lifespan and has been described as a key rehabilitation outcome. 5-8
Understanding participation of children with cerebral palsy in family and recreational activities
Research in Developmental Disabilities
Aims: The primary aim of this study was to determine the effect of age, sex, gross motor, manual ability, and communication functions on the frequency and enjoyment of children's participation in family and recreational activities. The secondary aim was to determine the relationships between motor and communication functions and participation. Methods: Participants were 694 children, 1.5 to 12 years old, with cerebral palsy (CP) and their parents across the US and Canada. Parents rated children's frequency and enjoyment of participation using the Child Engagement in Daily Life measure. Parents and therapists identified children's level of function using Gross Motor Function Classification System (GMFCS), Manual Ability Classification System (MACS), and Communication Function Classification System (CFCS). Results: Differences in frequency and enjoyment of participation were found based on children's GMFCS, MACS, and CFCS levels but not age or sex. Children with higher gross motor, manual, and communication functions had higher frequency and enjoyment of participation, compared to children with lower functions. Frequency of participation was associated with GMFCS and CFCS levels whereas enjoyment of participation was only associated with CFCS level. Implications: Knowledge of child's gross motor, manual ability, and communication functions of children with CP is important when setting goals and planning interventions for participation. Highlights 1. Introduction: In the past two decades, there has been an increasing interest in understanding and promoting participation of children with cerebral palsy (CP). Although the World Health Organization (WHO) has broadly defined participation as "involvement in life situations" (WHO, 2007, p. 9), conceptual clarity of the WHO's definition is still open to debate in the pediatric participation literature. Recently, Imms and colleagues (2016) conducted a systematic review to explore variations in the language used to describe participation and they found two key terms that describe the participation construct, attendance and involvement. The authors further described attendance as the physical presence of the child in the activity, whereas involvement represents the "in-moment experience" of participation and includes elements of affect, motivation, and social connection (Imms et al., 2016). Chiarello (in press), however, suggests that involvement includes "affective, cognitive, and behavioral elements: how the person is feeling, thinking, and behaving". Nevertheless, there is a general consensus among researchers that participation is a multidimensional construct that can be influenced by a wide range of child, family, and environmental factors (Imms et al., 2016;
International Journal of Environmental Research and Public Health, 2021
In order to develop suitable support for participation in pediatric rehabilitation, it is important to understand what barriers need to be bridged from the perspectives of both children and adults. The aim of this study was to explore barriers to participation in pediatric rehabilitation services, according to children and young people with disabilities, parents to children with disabilities, and professionals. Data was collected in individual interviews (n = 48) and focus groups (n = 8), which were analyzed with qualitative content analysis to extract barriers to participation. Identified barriers include three categories: (1) insufficient access (controlling adults, adult-centered healthcare); (2) insufficient trust (low level of trust in adults, low level of trust in children, low self-confidence in children); and (3) insufficient involvement (norms of non-participation, low level of commitment in children). The participant groups had divergent conceptions of where and how barrie...