May 2015

In this May edition of CanChild Today! we celebrate the recognition of several CanChild colleagues, introduce a new resource exploring how health services are meeting the needs of children with cerebral palsy, and invite you to attend an exciting CP-NET webinar covering the latest in stem cell research. Additionally, we are pleased to feature a guest post by Finland-based physiotherapist Lotta Kauhanen, reporting on the "F-words" at EFRR 2015.

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!

New Resource by CanChild!

CanChild In Brief | Are Services Meeting the Health Needs of Children with Cerebral Palsy?

Children with cerebral palsy often experience multiple associated health conditions, and therefore have an increased need for health services. This study looked at parent-reported questionnaires to determine the number of co-occurring conditions and resulting daily impacts experienced by the child, and then measured the extent to which all of their health needs had been addressed. In addition, the study highlighted areas that could benefit from an increased range of services.

Upcoming Events!

Featured Event: CP-NET Webinar

Potential application of Stem Cells to treat Cerebral Palsy: Fact or Fantasy?

Presented by Dr. Michael Fehlings

Date: June 26, 2015

Time: 2:00pm-3:00pm EDT

Register now: https://eventbrite.ca/event/17124458717/

Many families of children with cerebral palsy (CP) are interested in learning more about stem cell research. Join us for a one-hour webinar with Dr. Michael Fehlings, who will provide an accessible overview of stem cells and the latest developments in stem cell research. Topics that will be covered include:

a) what is a stem cell and what different types of stem cells are there

b) how do stem cells work and what are the limitations

c) discuss the potential use of neural stem cell in detail with a particular focus on models of cerebral palsy

d) briefly describe current clinical trials with stem cells in CP

e) discuss what the future holds in regenerative neuroscience for CP

f) discuss sources to get more information

Attendees will have the opportunity to submit questions during the session.

Parents, families and health service providers are all encouraged to attend. Spots are limited- register today!

For more information about CP-NET (Childhood Cerebral Palsy Neuroscience Discover Network), see www.cp-net.org.

CP-NET webinars are produced with funding by the Ontario Brain Institute.

Apps4Kids Hackathon

Dates: June 12-19
Location: The University of British Columbia (Vancouver, BC)

Register now: https://hackathon-workshop.eventbrite.ca

The 'Apps4Kids Hackathon' is a free event taking place June 12-19, 2015 at the Department of Electrical and Computer Engineering at UBC, in collaboration with professionals from the Department of Paediatrics at UBC and the Child Family Research Institute. The hackathon features groups of students, developers, physicians, parents and parent groups creating and refining apps that aim to solve medical care challenges for children and youth with chronic care needs, including children with neurodevelopmental conditions.

Students will be able to apply their technical skills to real-world, innovative app development, and work in a team-oriented environment. Interested students will gain valuable mentoring experience from healthcare professionals and potentially continue as summer students in app evaluation projects. Participants will have the opportunity to win cash rewards.

Updates on presentations, pitches and prizes will continue to be posted on the UBC ECE page, ECE Facebook page and the ECE twitter feed!

Honours and Awards

Congratulations to Lisa Rivard, winner of the 2015 Pursuit Award!

Photo courtesy of the Bloorview Research Institute at Holland Bloorview Kids Rehabilitation Hospital

Dr. Lisa Rivard, CanChild PhD student and recent graduate of the School of Rehabilitation Sciences (supervised by Dr. Cheryl Missiuna) at McMaster University, has been presented with the prestigious 2015 Pursuit Award. The fifth annual Pursuit Award Ceremony was held at the Bloorview Research Institute on May 5.

The Pursuit Award recognizes current PhD students and recent alumni from around the world for their remarkable achievements in childhood disability research. Finalists are selected based on significance of research results, methodologic rigour, empirical content, and impact on childhood disability care.

The Award is funded by Holland Bloorview Foundation donors David and Anne Ward and the Bloorview Research Institute.

Congratulations to Eyal Cohen, winner of the 2015/16 Canadian Harkness Fellowship!

The 2015/16 Canadian Harkness Fellowship, co-funded by the Canadian Foundation for Healthcare Improvement and The Commonwealth Fund, has been awarded to Dr. Eyal Cohen, CanChild scientist and Staff Physician at The Hospital for Sick Children. He will participate in The Fund's prestigious 12-month Harkness Fellowships in Health Care Policy and Practice.

The Harkness Fellowships, modeled after the Rhodes Scholarships, were established by The Commonwealth Fund in 1925. They aim to produce the next generation of health policy leaders in the nine participating countries -- Australia, Canada, France, Germany, the Netherlands, New Zealand, Norway, Sweden, and the United Kingdom.

CanChild Around the World!

F-words in Rehabilitation - News from the International Rehabilitation Congress

Guest post by Lotta Kauhanen

The thirteenth international congress for research in rehabilitation EFRR 2015 (13th Congress of the European Forum for Research in Rehabilitation) was held in Helsinki on 6th to 9th of May 2015. The purpose of the Congress was to share information and good practices of the biopsychosocial nature of rehabilitation from multidisciplinary and multi-professional perspectives. As the name suggests, the congress provided a forum for discussion for people involved in rehabilitation and rehabilitation research.

CanChild Director Dr. Jan Willem Gorter presents at EFRR2015. Tweetpic courtesy of @suenormy1

In the congress, I (...) learned about six important "F-words" in relation to disabled children's rehabilitation. The F-words "Function", "Family", "Fitness", "Fun", "Friends" and "Future" propose how the thinking behind the ICF classification can be brought to children's rehabilitation in a way that is fun, easy and memorable. Through these F-words, it is possible to change the paradigm from disability to seeing the opportunities and possibilities of a child's participation and functioning. These F-words also take into account the important elements of the child's living environment, such as family and friends and, therefore, the idea of family-centered rehabilitation is also reached. At first, F-words may seem obvious, but how well do we actually pay attention to these elements in children's healthcare and rehabilitation? How can we support the participation of a disabled child in a way that is fun and appropriate in his/her living environment?

The creator of F-words, Dr. Gorter, gave a lecture in EFRR 2015 titled "Focus on children's Function and their Future". The F-words are also essentially connected to previous TT-blogs about gaming, play, the habilitation nursing of children and children's right to be heard and participate in decision-making.

This is a condensed version of a post that originally appeared at Terveytt� tieteest�.

Community News!

Jooay app now available for iPhone!

Participation in leisure is crucial for both healthy development and quality of life. This is a right of all children as stated by the United Nations convention on the rights of children. However, there are fewer opportunities for adaptive leisure and inclusive activities. Parents and youth don't know how or where to find this information.

Jooay is an app that helps children with disabilities and their families to locate leisure opportunities that are: Accessible, suit their needs and abilities, match their preferences, can help them develop and participate in society.

Visit the jooay website, or download at the AppStore. Coming soon to Android!

The Health Profile on Immigrant and Refugee Children and Youth in Canada module now live!

Do you need important information on the health of immigrant or refugee children & youth? Visit the Health Profile on Immigrant and Refugee Children and Youth in Canada Module, launched on May 19.

This module describes immigrant and refugee children and youth up to 24 years of age in Canada and their overall health status. It specifically identifies priority preventable conditions and diseases among immigrant and refugee children and youth and explores the question of cultural discordance and how this might influence their health and well-being.

Read more and access the module.

Recent Publications by
CanChild Members

The meaning of leisure for children and young people with physical disabilities: a systematic evidence synthesis.

Although participation in leisure activities enhances well-being for children and young people (CYP) with physical disabilities, participation is reduced when compare to their typically-developing peers. A critical first step in facilitating meaningful participation is to understand what leisure means to CYP with physical disabilities. The purpose of this study was to review qualitative literature and identify evidence that could answer the question "what does leisure mean ('look and feel like') for CYP (0-18y) with physical disabilities?". Authors: Powrie B, Kolehmainen N, Turpin M, Ziviani J, Copley J. Dev Med Child Neurol. 2015 May 4. doi: 10.1111/dmcn.12788. [Epub ahead of print]

Parental satisfaction with inpatient care of children with cerebral palsy.

Children with cerebral palsy (CP) have complex care requirements and spend more time in hospitals than children without a disability. However, hospitals are not always able to manage these increased healthcare needs appropriately. The aim of this study is to measure how satisfied parents of children with CP are with the inpatient healthcare provided for their child, and to identify areas where care could be improved. Study results suggest that parents of children with CP are less satisfied overall with inpatient care when compared to parents of children without a disability. This information could be used to inform future changes in care to improve parent satisfaction. Authors: Iannelli M, Harvey A, O'Neill J, Reddihough D. J Paediatr Child Health. 2015 May 4. doi: 10.1111/jpc.12908. [Epub ahead of print]

Optimising motor learning in infants at high risk of cerebral palsy: a pilot study.
While recent studies suggest that early intervention is beneficial for babies with cerebral palsy (CP), difficulties in accurately diagnosing very young babies mean that the average child with CP is not diagnosed until 19 months of age. The purpose of this study was to measure the short-term effects of "GAME", a new goal-oriented, activity-based, environmental enrichment therapy program on the motor development of 3-5 month old babies at high risk of CP. Although a short-term pilot study, GAME appears to offer a promising new intervention for babies during a critical phase of neurodevelopment. Authors: Morgan C, Novak I, Dale RC, Badawi N. Med Sci Sports Exerc. BMC Pediatr. 2015 Apr 1;15:30. doi: 10.1186/s12887-015-0347-2.

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