Imms et al. (2017). Participation, both a means and an end: a conceptual analysis of processes and outcomes in childhood disability (original) (raw)
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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 ...
Measuring participation of children with disabilities: Issues and challenges
Disability & Rehabilitation, 2008
Purpose. The aim of this paper is to examine conceptual issues that challenge development of valid and useful measures of children's participation. Method. Ambiguities in the current definition of participation in the International Classification of Functioning, Disability and Health (ICF) are examined along with their implications for developing valid measures for children and youth. Results. Developers of new measures must address three key issues that will affect the ultimate meaning of participation data obtained from these instruments: uncertain criteria to distinguish activity from participation; lack of consensus on whether measures should address objective or subjective aspects of participation or both; and appropriate choice of respondent when children are the focus. Variations in how the participation construct is operationalized challenge one's ability to develop a coherent body of knowledge about children's participation and the factors that influence it. Conclusion. Given current variations in how participation is being defined, both developers and users of measures of participation need to be explicit about the definition of participation that a particular measure represents and the inferences that can be drawn from the scores.
Disability and Health Journal, 2017
Background: While participation is essential to a child's health and well-being, little is known about participation patterns of young children with disabilities. Objective: This study described the participation of children with disabilities under age 6, and examined the extent to which the child's factors (i.e., age, complexity of child's condition), family factors (i.e., general family functioning, income) and environmental factors (i.e., environmental helpfulness) affect participation dimensions (frequency, involvement, desire for change) in three different settings: home, daycare/preschool and community. Methods: Cross-sectional design was employed. Parents (n=90) of children aged 1.4 to 6 years old (mean= 4.15, SD= 1.03) with disabilities completed the French Young Children's Participation and Environment Measure (YC-PEM) and Family Assessment Device. Descriptive statistics and multiple linear regressions were performed to describe participation patterns and identify the significant explanatory factors in each setting. Results: Participation restriction, based on frequency of activities, was primarily observed in the community setting. Environmental helpfulness (resources, supports) consistently explained participation levels for at least one of the dimensions across all settings, whereas contribution of the child's factors was less evident. Family functioning had a significant effect when examining participation involvement in the community and desire for change in the home setting and, in combination with environmental helpfulness, explained 18% and 21% of the variance respectively. Conclusion: This study emphasizes the role of the environment in supporting participation of young children with disabilities. Findings can redirect practitioners' attention towards modifying the environment as a primary target of intervention aimed at promoting health through participation.
Family factors associated with participation of children with disabilities: a systematic review
2019
The aim of this review was to synthesize empirical evidence of family factors associated with participation of children with disabilities aged 5 to 12 years to inform the development of family-centred participation-fostering interventions. METHOD A systematic search was performed for articles published in English between 2001 and 2017 in MEDLINE, PsycINFO, CINAHL, Scopus, and ASSIA following the Preferred Reporting Items for Systematic Review and Meta-Analysis (PRISMA) guidelines. Quality of evidence was appraised using the Research Triangle Institute Item Bank. Family factors associated with participation were identified and assessed using a multistage 'semiquantitative' approach. RESULTS Thirty studies were included in the review. Four non-modifiable 'status' factors consistently associated with participation were parental ethnicity, parental education, family type, and family socioeconomic status. Six modifiable 'process' factors with consistent associations with participation were parental mental and physical health functioning, parental self-efficacy beliefs, parental support, parental time, family preferences, and activity orientation. INTERPRETATION Rehabilitation professionals should direct their focus towards modifiable family factors as primary targets for family-centred interventions. Strategies that can improve families' access to information, counselling, and community support services are likely to support children's participation by empowering families and optimizing their health and well-being.
American Journal of Physical Medicine Rehabilitation Association of Academic Physiatrists, 2011
Granlund M, Arvidsson P, Niia A, Bjö rck-Åkesson E, Simeonsson R, Maxwell G, Adolfsson M, Eriksson-Augustine L, Pless M: Differentiating activity and participation of children and youth with disability in Sweden: a third qualifier in the International Classification of Functioning, Disability, and Health for Children and Youth?. Am J Phys Med Rehabil 2012;91(suppl):S84YS96.
Child Neurology Open
Aim: Evaluation of the International Classification of Functioning, Disability and Health child and youth version (ICF-CY) activities and participation d code functions in clinical practice with children across diagnoses, disabilities, ages, and genders. Methods: A set of 57 codes were selected and worded to describe children's support needs in everyday life. Parents of children aged 1 to 15 years participated in interviews to discuss and rate their child's disability. Results: Of 367 invited parents, 332 (90.5%) participated. The mean age of their children with disability was 9.4 years. The mean code scores were 50.67, the corrected code-total correlations were .76, intercode correlations had the mean of 0.61, and Cronbach's a was .98. As a result of Rasch analysis, graphical data for disability measures paralleled clinical expectations across the total population of 332 children. Conclusion: The World Health Organization International Classification of Functioning, Disability and Health child and youth version d code data can provide a coherent measure of severity of disability in children across various diagnoses, ages, and genders.