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January 14, 2014
CanChild Today
Greetings!  

This edition of CanChild Today focuses on youth with disabilities. We have featured newly published articles on this topic by CanChild members, resources such as the PEM-CY, and a short survey (that we hope you will complete).
 
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New  Resources on the CanChild website (www.canchild.ca)!
Evaluation of the Participation and Environment Measure for Children and Youth (PEM-CY)
This In Brief describes a study that evaluated whether the PEM-CY provides consistent information about participation and actually measures what we wanted it to measure. Click here to read more details about the final stage of developing the PEM-CY.

This In Brief presents results from a study that examined open-ended questions that provided parents an opportunity to describe their needs and strategies for promoting their child's participation in home, school, and community settings. Data on nearly 600 parents of children and youth across Canada and the United States who were part of the testing of the PEM-CY were examined in this study. Click here to view.
Participants Needed!
We are looking for parents, caregivers, adolescents, young adults and service providers to provide feedback to us regarding the What Participation Means to Me video clips. These video clips on the Participation Knowledge Hub highlight stories about youth who are enjoying activities within their communities. After you have watched any of the video clips, please click here to fill out a short survey. This will help us improve our content and provide input on future videos. Click here to view videos.
Recent Publications by CanChild Scientists, Research Associates, Post-Doctoral Fellows & PhD Students
In this article published in Physical & Occupational Therapy in Pediatrics, investigators used Goal Attainment Scaling (GAS) and the Canadian Occupational Performance Measure (COPM) as outcome measures to study the effectiveness of life skills programs for 50 youth with disabilities. Specifically, the effectiveness of group-based and one-to-one interventions on goal attainment was compared, and whether this was affected by gender or goal domain. Results: Goal-focused, community-based experiential life skills interventions are effective in supporting skill development in youth with a disability and help them prepare for transition to adult life. Authors: S Keenan, G King, CJ Curran, A McPherson. Abstract.

An integrated methods study of the experiences of youth with severe disabilities in leisure activity settings: The importance of belonging, fun, and control and choice
The aim of this study was to examine the leisure activity setting experiences of two groups of youth with severe disabilities. The analysis revealed several highly valued aspects of leisure activity setting experiences for youth, including engagement with others, enjoying the moment, and control and choice in selection and participation in activity settings. Implications for service providers: When providing interventions that focus on "participating" in an "activity" for youth with disabilities, do not lose sight of the importance of the broader concepts of belonging, fun, and control and choice. Published in Disability and Rehabilitation. Authors: G King, BE Gibson, M Pinto, F Goh, G Teachman, L Thompson. Abstract.

Life quality and health in adolescents and emerging adults with epilepsy during the years of transition: A scoping review
In this review, literature was systematically searched for studies reporting on self-reported challenges faced by young people during their years of transition. The identified issues were classified according to the International Classification of Functioning, Disability and Health (ICF) and epilepsy specific QOL frameworks. The ICF did not cover all of the experiences of individuals with epilepsy but using both frameworks complemented each other in covering most of the challenges and helped improve the categorization of the impact of epilepsy. This review highlights that further progress is needed in developing theoretical constructs that fully classify and describe these challenges during the years of transition that also would include co-morbidities, impending medical interventions, and most importantly concerns for the future. Published in Developmental Medicine & Child Neurology. Authors: L Thomson, N Fayed, F Sedarous, GM Ronen. Abstract.

Is the Give Youth a Voice questionnaire an appropriate measure of teen-centred care in paediatric oncology: A Rasch measurement theory analysis
The Give Youth a Voice (GYV) questionnaire was modeled after the Measures of Processes of Care (MPOC) by researchers at Holland Bloorview Kids Rehabilitation Hospital. The GYV-56 measures four aspects of service delivery: Supportive and respectful relationships; Information sharing and communication; Supporting independence; and Teen-centred services. The objective of this study was to determine whether the GYV-56, its subscales and its 20-item short-form, are clinically meaningful and psychometrically sound instruments that can be used to measure teen-centred care in paediatric oncology. These investigators found initial support for use of the GYV. Published in Health Expectations. Authors: AF Klassen, SJ Cano, R Sinha, A Shahbaz, R Klaassen, D Dix. Abstract.

A multi-method approach to studying activity setting participation: Integrating standardized questionnaires, qualitative methods and physiological measures
The article, published in Disability & Rehabilitation, describes data collection in a real-life setting to outline the opportunities, challenges and lessons learned. The methods included (a) two new quantitative measures of qualities of home and community activity settings and youth experiences; (b) youth-friendly qualitative methods, including photo-elicitation, observations, electronic interviews and face-to-face interviews; and (c) an innovative system to collect physiological data that provided insight into the experiences of youth beyond other methods. The study demonstrated that these diverse measures can be practically combined to study activity setting participation experiences. Authors: BE Gibson, G King, A Kushki, B Mistry, L Thompson, G Teachman, B Batorowicz, M McMain-Klein. Abstract.
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Contact Us: if you have any questions or comments, please contact us at canchild@mcmaster.ca.