Past Research at SSCY Centre

Children who are born with cardiac defects are known to be at greater risk for neurodevelopmental impairment later in life. Conotruncal heart abnormalities are one type of heart defect that typically requires surgery after birth. A recent study has suggested that in before birth children with conotruncal heart abnormalities have enlarged part of the brain known as the cavum septum pellucidum (CSP). The purpose of this project is to determine the relationship between CSP size and neurodevelopmental outcomes of children born with conotruncal heart abnormalities in Manitoba.

For this project we will use historical data to determine neurodevelopmental scores of children with conotruncal heart abnormalities. We will then look at their ultrasound images and measure the CSP size to determine if there is any associated between low neurodevelopmental scores and CSP size.

The results from this project could help physicians better understand outcomes of children with conotruncal heart abnormalities, provide a better predictor of outcomes in these children and allow for earlier interventions for these children to improve their outcomes.

Researchers at the University of Manitoba and SSCY Centre Physiotherapists are working together to try a new clinical model for physiotherapy for babies with plagiocephaly (flattening of the head) and torticollis (shortening of the neck muscles). Physiotherapists work with families on handling and positioning techniques, and recommend play-based activities to improve neck range of motion, strength and development.

In Winnipeg, babies are typically assessed and treated one at a time. Other centres across Canada have started group treatment to minimize wait times and foster learning between families.

The objectives of this project are: 1) examine how other Canadian centres deliver treatment to babies with plagiocephaly and torticollis; 2) work with caregivers, physiotherapists and managers to redesign how service is delivered at SSCY Centre; and 3) pilot test and evaluate the new service delivery model at SSCY Centre. The project aims to improve service provided and wait times for babies with plagiocephaly and torticollis.

The Prosthetics Program at RCC provides upper limb prosthetic devices to about 50 children and youth. A wrist unit attaches the terminal device  (such as a hand, hook, or hockey stick adapter) to the user’s limb socket. Right now, there are no wrist units made in child sizes, so children have to use an adult-sized wrist unit. These units are often bulky and heavy, and are hard to adjust without help. These wrist units can also break when used for activities that have a lot of force, like riding a bike or playing in a playground.

This project will design, make and test a new type of wrist unit, which would be better for children to use. We will ask six children to test the new wrist unit, to find out if it is easy to use, and if it can be used for different types of activities. We will compare the new wrist unit to the units the children are using right now.  We will make changes to the wrist unit based on what participants say about it, so that we keep making it better. Our goal is to be able to give all our clients this new wrist unit as part of their prosthetic device.

“We are the stories we tell ourselves.” – Joan Didion

Through personal stories, we connect with other people, learn about and express who we are, understand the perspectives of other people, and advocate for what we and others need. Children with autism need to do all these things for the same reasons as everyone else, but often have difficulty sharing and reflecting on their experiences.

Support from clinicians is expensive and difficult to access for many families. However, parents have a unique place in their child’s life, as parents are the people who spend the most time with their children. They have a history of shared memories, and that makes it easier for them to reminisce together.

In this study, parents will have the opportunity to learn how to support collaborative storytelling with their child by practicing the strategies they learn in a two-hour seminar. Recordings of conversations between parents and children will be collected over the following weeks to see if parents can and do change their habits of conversation. Feedback from a focus group discussion will be used to answer whether families find this kind of parent training to be a helpful form of support.

Potential benefits of this study include improved listening and communication skills for both parent and child, and the opportunity to build understanding of strategies for supporting language development for children with autism spectrum disorders.

In order to participate, the child must be between the ages of 8 and 16, be diagnosed with autism, and be able to speak using sentences in English.

Client satisfaction with artificial limbs and braces can be influenced by many factors. It is important to study the factors that impact client satisfaction to improve both the process of making the device as well as the device itself.

A research study is being completed to investigate the factors that are linked to client satisfaction with artificial limbs and braces that are provided in Manitoba, Canada. The study includes two surveys, one to be completed by the client and another to be completed by the prosthetic or orthotic technician.

This survey project aimed to assess child and youth use and caregiver satisfaction with equipment funded by CRF. Information obtained from the surveys will be used to improve therapist education about who may benefit from what type of equipment, improve caregiver training on how to use the equipment optimally, and ensure CRF-funded equipment is being used appropriately. This will lead to improved equipment provision and enhanced quality of life for the children and youth who receive equipment.

64 surveys were completed. Results showed that overall families are happy with their equipment, and it is being used for its intended purposes.  The equipment helps children and youth with their desired activities and to be independent.

Ongoing work after the project involves working with CRF to provide regular surveys to all families who receive equipment, to provide ongoing feedback.

Parents participated in a parent learning program that blended and enhanced two pre-existing programs (Relate Program and Cooking Club) in order to provide a new, specialized program for parents of children with Autism Spectrum Disorder or developmental delay. The goal of this new learning series is to help parents understand their child’s unique learning style and to give parents the practical tools to become their child’s own best teacher and guide.  Evaluations and feedback will be used to improve this new program in the future.

Seven participants completed the training sessions, and all participants were satisfied with the training they received, and thought it was helpful. Participant feedback was used to modify the program.

The Build Your Parenting Toolkit program continues to be offered at RCC. Plans for a larger and longer evaluation are underway.

The purpose of this study is to gain feedback from child health care professionals working with children (at Children’s Hospital, St Boniface Hospital, and SSCY) about their experiences and opinions regarding clinical research in Manitoba. Through this project the researchers hope to learn more about their research background and current research activities involving children, barriers that may exist to becoming involved with clinical research, and to develop strategies to overcome them.

210 surveys were completed: 39% were nurses, 7% physicians and 54% other HCPs (e.g. PT, OT, dieticians, physician assistants).

The vast majority of responders felt research is key to advance patient care and are interested in participating in clinical research, but lack of time was a common barrier. 81% felt that tertiary centres should be leaders in pediatric clinical research. 4% had participated in such research but few have received specific training.

We recommend the strategic plans of HSC/SBGH and Child Health/Women’s Health Programs increase awareness, opportunities and address logistical issues to improve HCPs’ participation in pediatric clinical research. Finally, there is a need to improve awareness and presence of CHRIM and other Foundations supporting child health research within our academic tertiary centres.

This is a follow-up study to one previously conducted in Neonatal Follow-Up at HSC. The main purpose of this observational study is to find out how common developmental delays and disabilities, short bowel syndrome, and death are in children born prematurely and who have a history of complicated belly infections. The developmental delays and disabilities may impact a child’s ability to see, hear, talk, and move. Short bowel syndrome happens when part of the gut has been removed or does not work correctly and can impact a child’s ability to digest food and absorb nutrients.

In Winnipeg, one out of two potential participants completed this follow-up study. Across all sites, 104 participants out of a potential 145 were enrolled.

View our results poster here!