January 2017  

Welcome to the January edition of CanChild Today! We're excited to welcome 2017 with brand new CanChild resources and a new video highlighting DCD in secondary school. We are also proud to announce the release of a publication detailing  Parents Participating in Research, an extraordinary partnership between CanChild researchers and parents of children with disabilities. 

Please feel free to share CanChild resources and this newsletter with family, friends and colleagues. They can subscribe to the CanChild Today Newsletter for free by registering   here . Our past issues are archived on the CanChild website and can be accessed here!  
New Resources!

What do we know about the relationship between family characteristics and infant gross motor development?

This "Keeping Current" explores the relationship between selected family characteristics and infant gross motor development. Understanding these associations might assist with early identification and selection of interventions to address early motor delays. The authors present findings from their research, summarize other research that has been done in this area, and propose recommendations for the direction of future research.

View now.

ACSF:SC Study "In Brief"
ACSF:SC (Autism Classification System of Functioning: Social Communication)

This "In Brief" summarizes the ACSF:SC (Autism Classification System of Functioning: Social Communication), which aims to classify levels of social communication ability in preschool children with Autism Spectrum Disorder (ASD).  It is the researcher's belief that by creating this common language to describe a child's social ability, parents, doctors, therapists, and teachers can collaborate to work towards meaningful functional goals for the child. 

Featured Publication

Knowledge Exchange and Discovery in the Age of Social Media: The Journey From Inception to Establishment of a Parent-Led Web-Based Research Advisory Community for Childhood Disability 
A new paper published in the Journal of Medical Internet Research describes how CanChild researchers and parents of children with disabilities worked together to build a remarkable online community and innovative partnership.   

Parents Participating in Research

"One of the greatest things about the group is that there are real time conversations on incredibly diverse topics happening every single day, from multiple contributors, across diagnoses, from communities both urban and rural, from parent to researcher, and researcher to parent, without barriers." 
- J Sprung, PPiR Community Manager

"I was not aware of the impact of the daily struggles that disabilities can have in the life of families. Many of the topics brought up in the group have not been brought up in the same way in clinical encounters." 
- PPiR researcher member

"I never realized that as a parent I could make a difference. This group has given me the hope and proof that I can."
- PPiR parent member
When approached for feedback about establishing a new research advisory committee for CanChild, parent adviser Jennifer Sprung proposed a novel idea. Why not connect with families in a convenient and accessible place where families already gather: online?  
"Parents Participating in Research" (PPiR) launched as a private Facebook group in June 2014, with the goal of exploring social media as a platform to enhance parent-researcher partnership and encourage knowledge exchange. It very quickly developed into what Sprung, now the PPiR Community Manager, describes as a "vibrant and busy community where there is never a shortage of discussion."

Knowledge Exchange and Discovery in the Age of Social Media: The Journey from Inception to Establishment of a Parent-Led Web-Based Research Advisory Community for Childhood Disability details the stages of building an effective online health community and discusses challenges and strategies for moving communities forward. Much like the PPiR community itself, the publication is a product of close collaboration and was co-authored by both researcher and parent members.

CanChild researchers interested in joining the PPiR Facebook group are encouraged to contact Andrea Cross for more information. 

AuthorsRussell DJ Sprung J McCauley D Kraus de Camargo O Buchanan F Gulko R Martens R Gorter JW.   J Med Internet Res.  2016 Nov 11;18(11):e293. [Open Access]

New Video!

It's back to school after the holidays!  And while many students are excited to return, others know that school can be a challenge. Academic and physical challenges can make school days hard both inside and outside of the classroom.  Did you know that there is one student in every high school class who struggles 
  with coordination difficulties? This 
can mean that handwriting, tying laces, using science apparatus or playing catch can be difficult, even in high school.  We used to think that kids with developmental coordination disorder - or DCD - grew out of these challenges.  But now we know that they don't.   Kids with DCD face coordination challenges through childhood, adolescence and adulthood: DCD does not go away. 

We can help kids with DCD by teaching them a strategy approach that allows them to MATCH their activities and abilities to promote success.  Watch this latest video to understand the role that MATCH can play to make returning to school easier for everyone, especially for those with DCD.

To learn more about DCD and using MATCH see http://dcd.canchild.ca.

Recent Publications by CanChild Members

Pediatric rehabilitation centers constantly face the challenge of reorganizing their services to accommodate changes in funding, client needs, accountability requirements, models and values, and evidence-based practices. However, resources to guide organizations through such changes are scarce. This paper describes the implementation of the "5Rs of Reorganization" at KidsAbility Center for Child Development , a paediatric rehabilitation center in Ontario, Canada undergoing organizational change. The 5Rs describe a novel process for planning service delivery reorganization projects in paediatric rehabilitation centers. It was developed by tailoring project management literature based on the needs and realities of a pediatric rehabilitation center. Firstly the process begins when the need for change is recognized Organizational leaders must identify a need, and share their vision for change with the stakeholders of the organization to promote stakeholder involvement, which has been identified to be crucial for the success of such projects. Secondly, a reallocation  of resources is required, since such projects often require particular expertise, time and money. Then, a review  of the reality of clients, service delivery and the community must be performed to gain a better understanding of the needs of the clients, the organization's role, and the context of the organization (ie. demographics of the community). Next, reality must be reconstructed,  in which a plan is solidified that identifies project goals and recommendations on how to achieve them. Lastly, the results must be reported  to communicate the plan for organizational change. It is recommended that information be shared repeatedly and in multiple formats. Overall, the implementation of the 5Rs at KidsAbility was found to promote the early engagement of stakeholders, the development of a feasible goal work plan, and adequate information collection to properly inform recommendations. Communication was found to be key through the planning phase, and the 5Rs helped support this.   Authors : Phoenix M , Rosenbaum P , Watson D, Camden C .  Phys Occup Ther Pediatr. 2016;36(2):217-28. doi: 10.3109/01942638.2014.997954. Epub 2015 Jan 8.

Environmental factors can significantly influence child participation in home, school, and community activities, yet few validated measures exist to evaluate such influences. With the challenges posed by such rapid urban growth, measures are needed to better inform professionals on how to collaborate with community members to develop sustainable environments that prioritize societal needs, such as promoting child participation. Although systematic processes such as the Health Impact Assessment (HIA) exist to evaluate the health impacts of such projects, the health-related outcome of participation in daily life activities has received less attention within this assessment. However, a number of measures to assess participation have since been developed, including the Participation and Environment Measure for Children and Youth (PEM-CY). The purpose of this study is to evaluate the validity and utility of PEM-CY for HIA in non-urban sustainable development projects that impact children with disabilities. A second aim was to examine differences in community participation patterns, as well as supports and barriers to community participation for children of various ages, functional limitations, and annual household income. Using the Craig Hospital Inventory of Environmental Factors (CHIEF) for Children-Parent Version as the comparator, it was found that PEM-CY in HIA could reliably assess the environmental impact on children's participation with greater specificity. It was also found that group differences by household income were present for participation frequency and number of supports (perceived availability and adequacy of money) for participation. 
Authors:  Khetani M , Marley J, Baker M, Albrecht E, Bedell G , Coster W , Anaby D , Law M . Disabil Health J. 2014 Apr;7(2):226-35. doi: 10.1016/j.dhjo.2013.11.003. Epub 2013 Nov 8.

Family-centered care is a key concept for treating children with cerebral palsy (CP). Children with CP often receive physical and/or occupational therapy, and parental belief in the therapy is essential as it has been found to influence treatment outcomes. Through this study, researchers hoped to explore the experiences and needs of parents with young children (age 2 to 4 years) in rehabilitation settings. By gaining a better understanding of the perspectives of parents, therapists may be able to maximize opportunities for parental engagement and therefore optimize the outcomes for children with CP. Parents identified three themes, which included information, communication, and partnership. A fourth overarching theme was identified as the process of parent empowerment. In terms of information, parents reported that their needs were not always met, highlighting an urgent desire for general information on CP at the start of their child's therapy, as well as more information regarding the therapy itself. For communication, some parents desired more honesty and two-way communication with the therapist that involved more personal attention, contact, and encouragement. Regarding a partnership, parents who thought of themselves as lay persons appreciated the leadership therapists exhibited in goal-setting for their child, while parents who thought of themselves as experts of their child wished to be more involved in the process. Lastly, it was found that overtime, parents felt increasingly competent, which describes their empowerment. As a result, the parents' roles and needs changed with their growth. In conclusion, due to the process of parent empowerment, service providers would be able to provide the best care to children with CP by facilitating the empowerment process by collaborating and supporting parents. Therefore, service providers should be educated on parent empowerment and ways to facilitate this process.  Authors Kruijsen-Terpstra A, Verschuren O , Ketelaar M Riedijk L,  Gorter JW , Jongmans MJ , Boeije H. Res Dev Disabil. 2016 Jun-Jul;53-54:314-22. doi: 10.1016/j.ridd.2016.02.012. Epub 2016 Mar 11.

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