|
Welcome!
|
Welcome to our Spring 2020 edition of CP-NET Today! In this issue, we are thrilled to
share the upcoming webinar on Microboards,
a recent webinar on Transition to Adult Care, videos from our CP-NET Science and Family Day, and a public talk by CP-NET team members about the F-Words. We are also excited to give an update on
The
Exergames Project, introduce a sleep research study, and highlight some recent publications from our team.
The CP-NET Today! newsletter will keep you updated on exciting research and developments in the area of CP research funded by the Ontario Brain Institute (OBI), as well as news and events of interest to the CP-NET community. Please feel free to share this newsletter with family, friends and colleagues. They can subscribe to the CP-NET Today! e-Newsletter for free by registering here.
Don't forget to check the cp-net.org
website for more great resources on CP.
|
|
|
|
Learning about the Benefits of Microboards: Danny's Story
|
A Microboard is a group of committed family and friends (at least five) who join together with a person who has a disability to create a supportive not-for-profit corporation. People and families that choose to invite others together to form a Microboard fundamentally believe that building strong and abiding relationships is central to a person's security and well-being. Danny and his family will share what starting a Microboard has meant to them.
|
Presenters:
Judith McGill - Provincial Consultant of Microboards Ontario and sibling of a man with cerebral palsy
Danny Steeves - Self-Employed, Talk Show Host and adult with cerebral palsy who has created a Microboard
Diane Peacock - Danny's Independent Facilitator
Dianne Eby - Danny's Mother and Microboard Director
Michelle Eby - Danny's Sister and Microboard Director
|
|
|
Transition to Adult Care: Experiences from Youth and Young Adults
CP-NET is proud to share a new webinar with you '
Transition to Adult Care: Experiences from Youth and Young Adults'.
In this webinar, young adults with CP shared their transition journey from child to adult health care. Presenters provided valuable insights on what helped them during the transition, what they wish they had to prepare for the transition, and resources that may help others who are transitioning from child to adult care.
|
|
|
| Transition to Adult Care: Experiences from Youth and Young Adults |
|
|
|
Watch the presentations online!
|
On October 5, 2019, CP-NET invited families, caregivers, clients, healthcare professionals, and researchers to come together for a day of research and celebration in recognition of World Cerebral Palsy Day. The day was filled with presentations on the latest CP research and engaging panel and plenary presentations!
Stay tuned for more announcements about the CP-NET Science and Family Day this year! You can also visit the CP-NET Events page to view the past celebrations.
|
|
OBI Public Talk Video Presentation!
|
L to R: Andre Picard, Dr. Jan Willem Gorter, Dr. Peter Rosenbaum, Dr. Andrea Cross,
Julia Hanes, Danijela Grahovac, Vasilije Grahovac
|
|
The Ontario Brain Institute hosted a Public Talk on the "F-Words: Finding the Ability in Disability" on February 19th.
|
|
The Exergames Project!
The Exergames Research Team:
Analyssa Cardenas (University of Toronto's Rehabilitation Sciences Institute), Daniel Warner, Lauren Switzer, Nicholas Graham, Darcy Fehlings, CP Discovery Lab at Holland Bloorview Kids Rehabilitation Hospital
|
When children with Cerebral Palsy (CP) grow up, they often need lower extremity orthopedic surgery because of changes that happen in their muscles and bones. Pain is commonly experienced during this post-surgical recovery period, as well as fewer opportunities for social interaction and fun. This research project examines the feasibility of implementing exercise video games, or "exergames", for inpatient children with CP recovering from lower extremity orthopedic surgery, and explores its impact on postoperative pain and well-being.
Ten children with CP recovering from lower extremity orthopedic surgery participated in the study, the first five received physiotherapy and the last five received physiotherapy as well as 15 exergame sessions over the span of three weeks. This study demonstrates that implementing exergames for children with CP recovering from lower extremity orthopedic surgery is feasible and has the potential to reduce pain and improve well-being. This research project provides a starting point for the development of larger studies to further explore exergames for inpatient pediatric orthopedic rehabilitation.
|
|
Participate in Research!
|
The BNBD-NDD research team is looking for families of children with ADHD, ASD, CP, and/or FASD from across Canada to participate in this research study to evaluate the effectiveness of BNBD-NDD.
|
|
CP-NET Research Update (COVID-19)
|
The CP-NET Study team has closely been monitoring information coming from our study sites, government and public health agencies. In an attempt to reduce the spread and transfer of COVID-19, all research under CP-NET will follow the guidelines as set out by the approval institutions and Research Ethics Boards. Any research that includes in-person contact will be halted until further notice. Research under CP-NET will continue if it can be completed remotely and follows existing physical distancing guidelines. We also understand that everyone is impacted by the current circumstance and may not have the resources to engage in research at this time. We are all working hard to ensure our projects continue to move forward and are ready to resume once we are able to safely meet in-person.
If you have any questions on specific studies, please contact
cpnet@mcmaster.ca
or your study contact person.
We are thinking of you, our CP-NET community, and want to thank you for your understanding as we navigate through this difficult time. Wishing you all the best.
|
|
|
Recent Publications by CP-NET Members
|
Congenital malformations are more common in children born prematurely, and prematurity is the leading risk factor for cerebral palsy (CP). This study aimed to describe the profile of congenital malformations in children with CP, compare the profiles of children with and without CP and congenital malformation, and explore the possible role of prematurity. This retrospective cohort study utilized data from the Canadian CP Registry (CCPR). The findings show that one in four children with CP have an associated congenital malformation. Their profile of term birth, higher Apgars and lower frequency of perinatal seizures suggests a distinct causal pathway.
Authors:
Sévère M, Ng P, Messerlian C, Andersen J, Buckley D, Fehlings D, Kirton A, Koclas L, Pigeon N, Wood E, Shevell M, Oskoui M. Science Direct, doi: 10.1016/j.pediatrneurol.2020.02.002
|
The Gross Motor Function level and age of children with Cerebral Palsy (CP) impacts physical caregiving. To understand how parental physical caregiving changes over time, 153 parents of children with CP used the Ease of Caregiving for Children Measure to rate their perceived level of difficulty when physically assisting their children. Parents and assessors classified children's gross motor function using the Gross Motor Function Classification System (GMFCS). Findings show that the ease of caregiving improved over time for parents of children classified in Levels I-III. The lack of change in ease of caregiving for parents of children classified in Level IV and V may reflect the children's persistent need for physical assistance from parents due to their functional limitations.
|
This cross-sectional observational study compared (1) self- and proxy-reported quality of life (QoL) in adolescents with epilepsy, cerebral palsy (CP), both epilepsy and CP, and a representative general population sample and (2) parental stress between parents of adolescents with epilepsy, CP, or both epilep
sy and CP. The study included 496 adolescents with epilepsy, 699 with CP, 192 with both CP and epilepsy, and 15,396 from the general population. The participants were assessed with the KIDSCREEN-52 and Parenting Stress Index. Results show that (1) adolescents with epilepsy, with or without CP, self-reported a better school environment than the general population, (2) adolescents with epilepsy or CP proxy-reported lower QoL than the general population, and (3) parents of children with CP or both CP and epilepsy have lower stress level than those with only epilepsy.
|
|
|
Canadian Anti-Spam Legislation
You are a member of the CP-NET Today electronic newsletter generated by the CP-NET Research Team. If you believe that you should not be a recipient, you may withdraw your consent to receive these messages at any time, in accordance with Canadian Anti-Spam Legislation (CASL), by contacting the sender of this message, or by clicking on the 'SafeUnsubscribe' link at the bottom of this newsletter.
Contact Us: if you have any questions or comments, please contact us at
cpnet@mcmaster.ca
|
|
A province-wide collaboration between:
|
|
|
STAY CONNECTED WITH CP-NET!
|
|
|
|
|
|
