CanChild Today - March 8

March 8, 2013

Greetings!

CanChild's research often explores the experiences of parents raising children with disabilities. This issue of CanChild Today includes tip sheets and links to some of the information that is available for families on the CanChild website. In addition, recent publications by CanChild scientists, research associates, and international collaborators are listed.

Check our 'What's New' page for more postings and announcements. Feel free to share CanChild resources and this newsletter with family, friends and colleagues. They can subscribe to CanChild Today for free by registering here. Our past issues are archived on the CanChild website (www.canchild.ca), and can be accessed here!

Information for Families of Children with Disabilities

"If I knew then what I know now..." This tip sheet provides advice and tips for new parents of children with cerebral palsy (CP) based on the reflections of parents in the ASQME study, in the hope that it can be used to help families in their journey of raising a child with CP. Click here to view.

Taking the Leap: Starting High School Three flyers were developed based on information gathered from interviews with adolescents and parents of adolescents. The flyers are written for adolescents, parents, and school personnel, and can be used as tools during the transition to high school process. Link to flyers here.

FCS Sheets This series of 18 FCS Sheets provides information about family-centred service (FCS) and strategies for using this approach. The FCS Sheets are written for parents, health professionals, and children's rehabilitation organizations. Click here.

F-Words in Childhood Disability The publishers of Holland Bloorview's BLOOM magazine have kindly granted permission to share this interesting blog, written by a mother of a child with cerebral palsy, in which she applies the 'F-words in childhood disability' when making decisions for her son Alfie! Click here to read the blog, and here to listen to Peter Rosenbaum discuss the concepts.

Recent Publications by CanChild Scientists, Research Associates, & International Collaborators

Peer support for parents of children with chronic disabling conditions: A systematic review of quantitative and qualitative studies
Researchers from Peninsula Cerebra Research Unit in the UK reviewed the qualitative and quantitative evidence of the benefits of peer support for parents of children with chronic disabling conditions with respect to health, well-being, impact on family, and economic and service implications. Four themes were identified from the qualitative studies: shared social identity, learning from the experiences of others, personal growth, and supporting others. From the quantitative studies, inconsistent positive effects of peer support on psychological health and other outcomes were reported. Published in Developmental Medicine & Child Neurology. Authors: V Shilling, C Morris, J Thompson-Coon, O Ukoumunne, M Rogers, S Logan. Abstract. Plain language summary available!

Needs of families with children who have a physical disability: A literature review
Published in Critical Reviews in Physical and Rehabilitation Medicine by NetChild researchers, this study reports the results of a systematic literature review on the needs of families with children who have a physical disability. Family needs were clustered into 99 unique needs and organized into 14 domains. The results emphasize the variety of needs that these families experience, with "information needs" being important. These findings may provide a resource for researchers who are developing tools to assess the needs of families with children with disabilities, and their individual needs. Authors: RC Siebes, M Ketelaar, JW Gorter, M Alsem, MJ Jongmans. Abstract.

Exploring the usefulness of comprehensive care plans for children with medical complexity (CMC): A qualitative study

The Medical Home model recommends that children with special health care needs receive a medical care plan, outlining the child's major medical issues and care needs to assist with care coordination. The purpose of this qualitative study, published in BMC Pediatrics, was to understand the usefulness and desired content of comprehensive care plans by exploring the perceptions of parents and health care providers of children with medical complexity. The investigators found the care plans were perceived to be a useful tool to both health care providers and parents. Authors: S Adams, E Cohen, S Mahant, JN Friedman, R Macculloch, DB Nicholas. Full access!

Longitudinal development of gross motor function among Dutch children and young adults with cerebral palsy: An investigation of motor growth curves
The investigators of this study, published in Developmental Medicine & Child Neurology, sought to describe the patterns for gross motor development by Gross Motor Function Classification System (GMFCS) level of individuals with cerebral palsy (CP). This longitudinal study included more than 400 children, youth, and young adults with CP living in the Netherlands. Participants were assessed up to four times with the Gross Motor Function Measure (GMFM-66) at 1or 2 year intervals. The results confirm the existence of five distinct patterns for gross motor development by level of severity of CP. Authors: DW Smits, JW Gorter, SE Hanna, AJ Dallmeijer, M Van Eck, ME Roebroeck, RC Vos, M Ketelaar. Abstract.

Environmental Opportunities Questionnaire: Development of a measure of the environment supporting early motor development in the first year of life
The researchers in this study published in Disability & Rehabilitation aimed to develop and test a measure that would evaluate the quality and variability in the home environment as it relates to the motor development of infants during the first year of life. The result, the Environmental Opportunities Questionnaire, is a feasible 21-item measure with good test-retest reliability and internal consistency. This questionnaire may be useful to therapists to inform and guide discussions with caregivers about potential influences of environmental factors in their child's early development. Authors: S Doralp, DJ Bartlett. Abstract.

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