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Greetings!
Several exciting resources are highlighted in this edition of CanChild Today. This issue features information that can help families improve their child's participation in both the school and community settings. Also featured are recently published articles about families of children with chronic health issues, by CanChild scientists, research associates, and international collaborators.
Please feel free to share CanChild resources and this newsletter with family, friends and colleagues. They can subscribe to the CanChild Today e-Newsletter for free by registering here. Our past issues are archived on the CanChild website, and can be accessed here! Check our What's New page for new postings on our website. |
Developmental Coordination Disorder (DCD) - On-line Parent Workshop
This interactive on-line workshop is designed to increase parents' knowledge about DCD and other motor coordination challenges, and to increase confidence in supporting a child's development and participation. It is useful for teachers, health professionals, coaches, family members, and friends. In this workshop, motor activities are highlighted - at school, home and at play - that are challenging for children with DCD. Strategies are provided to help support these children in various settings. Click here to view the on-line workshop, and here for other DCD resources.
Participation Information for Programs & Agencies
The Participation Information Forms for Programs and Agencies were developed with input from community organizations, parents and occupational therapists. These Tip Sheets represent a broad range of leisure activities and were designed to enable parents to provide information to a program or agency about their child/youth's abilities and goals. The focus on the child's abilities and goals will foster positive communication and problem-solving between families and program staff. View here.
Fostering Family-Centred Service in the School
Family-centered service (FCS) is made up of a set of values, attitudes, and approaches to services. FCS recognizes that each family is unique; that the family is the constant in the child's life; and that they are the experts on the child's abilities and needs. This FCS Sheet provides information and strategies to foster a FCS approach in the school. It is #16 in a series of 18 FCS Sheets written for parents of children with special needs, health professionals, and children's rehabilitation organizations. Although developed several years ago, the information remains current. Click to view Fostering Family-Centred Service in the School, and here to view all FCS Sheets.
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Recent Publications by CanChild Scientists, Research Associates, & International Collaborators
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Assessment of family needs in children with physical disabilities: Development of a family needs inventory
An initial inventory of family needs was derived by reviewing the literature in a previous study by NetChild. Families of children with a wide variety of physical disabilities then participated in semi-structured interviews and checked the inventory based on their family needs. Based on the responses of these parents (and also of healthcare professionals) the Family Needs Inventory - Paediatric Rehabilitation (FNI-PR) has been developed, a comprehensive inventory for family needs that can be used in paediatric rehabilitation. The inventory may facilitate the implementation of family-centred care. Published in Child: Care, Health & Development. Authors: MW Alsem, RC Siebes, JW Gorter, MJ Jongmans, BGJ Nijhuis, M Ketelaar. Abstract.
Residential movement patterns of families of young children with chronic conditions in Ontario, Canada: A population-based cohort study
Investigators in this study compared the residential movement patterns of a cohort of children, grouped by complex chronic conditions, low birth weight, and/or asthma vs. a control group of otherwise healthy children. Results: children from the lowest income were most likely to move residence. Compared with the healthy children in the control group, the groups of children with chronic disease were more likely to be born in neighborhoods with the lowest income and to move. Among children who moved, all groups of children with chronic disease were significantly more likely to move to a low income neighborhood. Published in International Journal for Equity in Health. Authors: E Cohen, N Yantzi, J Guan, K Lam, A Guttmann. Full access!
Mothers' experiences with the Pediatric Evaluation of Disability Inventory (PEDI)
The Pediatric Evaluation of Disability Inventory (PEDI) is a parent-report questionnaire used to gather information about a child's functional abilities. The aim of this study published in Physical & Occupational Therapy in Pediatrics was to explore mother's experiences associated with completion of the PEDI before and after their child's functional therapy (PT, OT and/or speech therapy) intervention. The investigators found that the experience of completing the PEDI increased the awareness and insight of mothers of children with cerebral palsy or developmental delay about their child's progress in relation to skill acquisition and level of assistance provided in daily activities. PEDI completion can also lead to mothers' feelings of sadness and stress if the child is able to do only a small subset of the listed activities. Accordingly, suggestions to therapists of ways to do a sensitive, guided process of PEDI administration are provided. Authors: D Rich, P Rigby, V Wright. Abstract.
Parents' and professionals' perceptions of family-centered care for children with autism spectrum disorder across service sectorsThis study published in Social Science & Medicine aimed to understand how families with children with autism spectrum disorder in Alberta, Canada experienced Family-Centered Care (FCC). Parents completed the Measure of Processes of Care (MPOC), and professionals completed the MPOC for service providers. Interviews were also conducted with a sub-sample of parents. There were statistically significant differences in FCC scores between parents and professionals. Qualitative data revealed positive experiences and perceptions of receiving FCC from front-line professionals, but negative experiences and perceptions of FCC at the systems level (i.e., administration, funders). Authors: S Hodgetts, D Nicholas, L Zwaigenbaum, D McConnell. Abstract.
This commentary considers how researchers and clinicians can respond to families' questions about their child's condition, prognosis, and effective treatments, and provide them with reliable information to make informed decisions about health care for their child. Ways to identify the information needs of families, and ways in which information needs might be addressed, are discussed within this article. This commentary was published in Physical & Occupational Therapy in Pediatrics by investigators at PenCRU. Authors: C McHugh, S Bailey, V Shilling, C Morris. Abstract. (This link may require a subscription - you can contact PenCRU for a pdf).
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