Here you can find information about research and evaluation projects that are currently happening at SSCY Centre!
Developmental Profile of Preschool Children with Prenatal Alcohol Exposure
Our FASD Centre is doing a project to describe the developmental profile of preschool children with FASD seen by the Manitoba FASD Centre over the past 11 years. We will describe the demographic, language and motor/sensory profiles of children under 5 who have been seen at the Manitoba FASD Centre. We will also be looking at any behavioral difficulties identified in preschoolers seen at the Manitoba FASD Centre. This will help us to better understand and identify preschool presentations, support earlier diagnosis, and facilitate appropriate interventions at young ages.
CanFASD Research Network Dataform Project
Our FASD Centre is part of a multi-site chart review that is collecting diagnostic information from FASD Centres across Canada, to confirm whether certain functional issues may be particularly common in children with neurodevelopmental disabilities. By comparing and contrasting individuals affected by Fetal Alcohol Spectrum Disorder (FASD), Autism Spectrum Disorder (ASD), and Cerebral Palsy (CP), it is hoped that the study will show that all three patient groups have similar patterns of brain impairment and could benefit from similar treatment recommendations and interventions.
The information gathered will also be useful in determining the risk factors and prevalence of the disorders regionally, as well as providing valuable information to communities and governments to improve service provision and support for individuals and families impacted by these disorders across Canada.
Parents of Newly Diagnosed Preschool Children with Autism Spectrum Disorder: The Effectiveness of a Self-Directed On-line Parent Training and Support Program on Parent and Child Outcomes
A Child Development Councilor with Children’s DisAbility Services is conducting a study on the effectiveness of a self-directed on-line parent training and support program for parents of newly diagnosed preschool children with Autism Spectrum Disorder. The purpose of this research is to develop and evaluate an on-line parent training and support program that will support parents during the wait time between their child receiving a diagnosis of Autism and receiving formal treatment services.
Development and Evaluation of Group Based Physiotherapy Services for Babies with Plagiocephaly and Torticollis
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 to: 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.
Canadian Neuromuscular Disease Registry
Our Neuromuscular Clinic is part of the Canadian Neuromuscular Disease Registry (CNDR), which is a national research project based at the University of Calgary. The purpose of the CNDR is to build a database of people suffering from neuromuscular disease across Canada. The CNDR database will collect medical information about people suffering from Duchenne Muscular Dystrophy (DMD), Myotonic Dystrophy (DM) Types 1 and 2, and Guillane Barré Syndrome. Finally, the database will collect contact information and the diagnosis of people suffering from any other neuromuscular disease or disorder.
By collecting detailed information on people with DMD and DM, the CNDR hopes to increase access to research opportunities. The CNDR also hopes that continued collection of health information will help to improve the consistency of care across the country. By collecting contact information and diagnosis for people suffering from other neuromuscular diseases, the CNDR plans to help people with uncommon conditions in finding research opportunities. This network will provide better information on the number of people and location of people with each disease. This will allow the CNDR to work with various groups to improve available funding and research opportunities within these diseases.
BRIGHT Coaching: A Health Coach System to Empower Families of Preschoolers with Developmental Delays
Researchers from the University of Manitoba and physicians at SSCY Centre are working together on a cross-Canada project to find ways to support and empower families of children with suspected developmental delays as they wait for formal care.
The research team will make a coaching package for families to use while they wait for formal care. This package will have a coach for parents to talk to, online learning, and can connect parents who are also waiting for formal care. The package will be given to 175 families (75 in Manitoba) to use while they wait for formal care. Another group of 175 families (75 in Manitoba) will not get the package, and will wait for formal care the same way families do now. At the start of the study, at 9 months, and at 18 months, the families in both groups will be asked questions that assess if the package is helping them while they wait, or not.
Neonatal Follow-Up Program: Evidence-Based Practice to Improve Quality
Our Neonatal Follow-Up Program is working on a cross-Canada project to improve the cognitive and language outcomes of premature newborns born <29 weeks gestation. Long term complications of prematurity, including delays in development, are very common.
From previous research it is known that there are interventions which are done after hospital discharge which have improved cognitive and language skills in children born preterm. These interventions vary in intensity, setting, timing and approach and many of them are a “package” of treatments which are complex or costly to provide. The components of the early intervention programs that are effective have not been studied.
This study involves trying out simple feasible interventions or a part of a “package” of proven treatments that are acceptable to a group of local experts and a parent representative. Every 3 to 6 months, the team will review whether the intervention is meeting its goals and it will be adapted and improved. This will happen over a 2 year period in 12 Neonatal Follow-up clinics across Canada, who will talk regularly with each other and learn from each other’s experiences using proven quality improvement techniques. Information about cognitive and language abilities of children born preterm at <29 weeks gestation who are 18 to 24 month old will be collected as part of another existing study to see whether this strategy works to improve the abilities of children born preterm.
What constitutes successful transition for young adult Manitobans with Cerebral Palsy?
Researchers from the University of Manitoba are studying what constitutes a successful transition for young adult Manitobans with Cerebral Palsy. In this study, we want to learn about, and define, what “successful” transition looks like from the perspective of those who have experienced this process.
People who are eligible are those 18-30 years old, speak/understand English, live in Winnipeg (and in Manitoba for at least 10 years) and use some type of assistive technology (e.g. mobility device, computer access device(s), communication device).
The study involves a one-time interview. Participants will be asked some questions relating to their experience with transitioning to adult healthcare services. Each young adult participant will also be asked be asked to identify a key support person (family member, partner, spouse or friend) and a key service provider (teacher, home care worker, therapist, employment counsellor, etc.) who will also be asked to participate in a one time interview.
Evaluation of the Design and Function of a Novel Prosthetic Wrist Unit
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 easy to use, and if it can be used for different types of activities. We will compare the new wrist unit to the units 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.
Remembering Together: Supporting Personal Narrative in Children With Autism Spectrum Disorder
“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.
Neurodevelopmental Outcomes of Manitoba Children Presenting with Hypoxic Ischemic Encephalopathy
This study is a chart review, and will investigate the preschool clinical-neurodevelopmental outcomes (including use of allied health services) of children diagnosed with Hypoxic Ischemic Encephalopathy (HIE) admitted to the two main neonatal intensive care units in Manitoba (Health Sciences Centre and St. Boniface).
Our aim is to analyze our own Province’s data to assist in improving the counseling of families, the planning of follow-up, and improving the quality of care of children with HIE in Manitoba.
- To determine the frequency of children diagnosed with HIE in Manitoba who underwent therapeutic hypothermia (TH).
- To describe physician’s compliance to current guidelines for the initiation and monitoring of TH.
- To determine the frequency of neurodevelopmental impairment among pre-school children diagnosed with HIE in the neonatal period.
- To describe the frequency of utilization of allied health services among children diagnosed with HIE.
An exploratory analysis of patient reported experience measures in prosthetic and orthotic users treated in Manitoba, Canada
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 clinician.
Lactoferrin Infant Feeding Trial
Almost 3,000 very low birth weight (<1500 grams) preterm infants are born and cared for in the Neonatal Intensive Care Units (NICU) in Canada every year. Because of their prematurity, these infants require help in order to survive. These infants are very vulnerable to serious illnesses, such as chronic diseases of the lungs, intestines, eyes, and brain as well as serious infections which can cause death or long term effects after going home.
Most preterm infants do not receive enough compounds that are known to help provide protection against developing some of these serious illnesses. One compound that has been found to be of importance is in human milk and is called “lactoferrin”. It is an iron-containing protein found not only in human milk but also in milk from mammals. Lactoferrin and other compounds in human milk help create an environment for growth of beneficial bacteria in the infant’s gut which prevents “bad bacteria” from growing. Because small preterm infants do not receive enough of this protective compound from the human milk or formula they are fed, the addition of lactoferrin as a supplement to the infant’s feed on a daily basis is being considered.
However, because human lactoferrin is very expensive and difficult to produce and obtain other forms of lactoferrin are being considered. Bovine lactoferrin, coming from cows, is thought to be the optimal supplement because of its close chemical structure to human lactoferrin.
The purpose of this study is to find out whether adding bovine lactoferrin once daily compared to not adding it, will have an effect on death or major illnesses of prematurity such as chronic lung disease, infections, necrotizing enterocolitis (a serious condition causing gut inflammation) or serious changes to the developing eye called retinopathy of prematurity.
The study treatment will be started within the first week of life until the infant reached 34 weeks corrected gestation. At 24 months corrected age, infants will have a neurodevelopmental assessment that will look at the child’s cognitive, language, and motor skills. In addition, information on additional motor, vision and hearing skills will be gathered.
Designing a Responsive and Integrative Model of Respite Care for Families of Children with Complex Care Needs and Conditions (CCNC) through Patient-Oriented Research
Children with complex care needs and conditions (CCNC) have physical and developmental concerns. They also need special services in their homes and communities. Taking care of a child with CCNC is a big responsibility. Sometimes families need someone else to take care of their child with CCNC for a short time so that they can have a break. This is called respite care. Respite care can help keep parents from becoming very tired or stressed out. Respite care can also help children with CCNC to socialize with others and feel more independent. However, families are not always able to receive the respite care that they need or can afford.
We are conducting a research study to find ways to improve respite care for families of children with CCNC in Manitoba. We will collect data from multiple sources in order to do so. We will interview families, service providers, and other stakeholders to find out what they think about respite care and how respite services can be improved. We will also ask families to take photographs that show the impact of respite care on their lives. We will look at models of respite care that are used across the world to learn more about what has worked well in other places. We will also analyze population-based data about children from Manitoba. The information from these sources will be combined to create a new model of respite care services. This model will be better able to meet Manitoba families’ needs.