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- Current Research at SSCY Centre>
Here you can find information about research and evaluation projects that are currently happening at SSCY Centre!
Research requesting family participation:
Understanding the Needs of Parents and Caregivers of Children who Require Additional Health, Developmental, or Behavioral Supports
Parenting children with greater health, developmental, or behavioural support needs may lead to higher stress and mental health concerns due to increased parenting demands. Poor parent mental health can negatively affect children’s rehabilitation outcomes and family wellbeing. Specifically, poor parent mental health can lead to additional difficulty navigating complex treatment plans and attending healthcare appointments. Despite these risks, we know very little about the mental health needs of these caregivers in Manitoba. We aim to better understand the mental health, support, and stress management needs of caregivers whose young children (ages 0-5 years) are receiving or waiting for services. In the first part of this study, we will ask caregivers to complete an online survey that will ask questions about their mental health, supports, and service needs. In the second part, we will ask service providers what they think would help caregivers of children with higher needs and how services could be changed to better support families. the results will help us see how services and service providers can adapt and develop supports to meet these families’ needs. The Hearts & Minds Lab at the UM wants to know about your parenting experiences and well-being! Parents of children waitlisted or accessing services at SSCY through the Child Development Clinic, FASD Clinic, and Neonatal Follow-up Clinic are eligible. Contact firstname.lastname@example.org for more information or to participate.
Developing a Living Laboratory in Pediatric Rehabilitation: A New Paradigm for Integrated Knowledge Exchange and Patient Engagement in Research
People are interested in using Living Labs to improve research and healthcare services. Living labs help researchers and clients to share knowledge in new and creative ways. The goal of this project is to design a Living Lab at SSCY center. To come up with a Living Lab design, we will work with youth age 5-19 who are being seen by SSCY clinicians, their families, and healthcare providers. This will help us make sure that our Living Lab is engaging and informative for everyone who comes to SSCY.
The project will have three stages. In Stage 1 we will talk to youth who are clients, their siblings, and parents. In this talk, we will ask where they think the Living Labs should be located, what purpose they will serve, and how they should be designed. In Stage 2 we will have youth, siblings, and parents complete a 5-10 minute online survey.
We will use the responses to these surveys to create three examples of a Living Lab. Then we will host a public event where people can see and interact with the Living Lab. The Living Lab will continue to be developed with future funding.
We are currently recruiting participants to take part in the survey. If your family receives services from SSCY clinicians, we would love for you to complete this survey!
If you are interested in finding out more about this opportunity, please contact the Project Coordinator, Sandra Wiebe, and she will send you a link to participate: Sandra.Wiebe@umanitoba.ca
Principal Researcher: Dr. Mandy M. Archibald
College of Nursing, University of Manitoba
Email address Mandy.Archibald@umanitoba.ca
Improving Respite Care for Families Requiring Respite Care
Some families require respite care for their children. Respite care can help keep parents from becoming very tired or stressed out. Respite care can also help children 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 requiring respite in Manitoba. We would like to talk to the families that require respite care and hear about their experiences and ideas of ways that it can be improved. Families will take part in two interviews. We will also ask families to take photos of the people, places or things they represent their daily life as well as their experience with respite care and how respite care or the lack of it, impacts their lives. Cameras will be provided to those who need one. We will also interview service providers and other stakeholders to find out what they think about respite care and how respite services can be improved. Families, service providers, and other stakeholders will help define the issues, identify the priorities, and contribute to solutions specific to respite care for children. We will also 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’s families’ needs.
Please contact Ardelle at: Ardelle.Kipling@umanitoba.ca or 204-229-4775 for further information.
Feasibility of using telepractice to provide Modified Interaction Guidance as an intervention tool for caregivers and their child with autism
This study is determining the feasibility of MIG as an intervention tool for caregivers and their child with autism via telepractice. MIG is a parenting experience where you and your child will meet with a counselor virtually (on-line) for weekly one-hour sessions. Through the use of recorded and virtual discussions you will learn to understand what your child is saying and what your child needs from you. You will receive help in setting limits and getting him or her to listen to you. In learning a technique called “Watch, Wait and Wonder” you will get to know your child better. there is also an aspect of this program that helps you explore your own upbringing and understand how it affects your parenting.
If you are interested in learning more about this study, please contact the graduate student and research coordinator (Megan Land McCarthy) directly at 204-293-7043 or via email at Landmcc3@myumanitoba.ca
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. For further information about this project please contact Hana McDougall at: email@example.com
Development of a Psychological Database of Children Assessed at the Manitoba FASD Centre
The goal of this project is to learn about children and youth in Manitoba who were exposed to alcohol before birth. We hope to learn about the mental health of these children and youth, as well as how they think, behave, and feel. We also hope to learn more about their school skills, their memory skills, and how they are doing with day-to-day activities. We currently lack a consistent way of tracking assessment information for these children and youth. As such, we will look at information of children and youth who have been seen by the psychology team at the Manitoba FASD Centre. We will take this information and create a database. This database will help us to answer four main questions The first is what type of information is measured for each brain domain and how is this information measured? The second is what information is missing and would be helpful to have? The third is how we can better spread out resources to children and youth who will likely have FASD? The fourth is what are some differences between children and youth who do and don’t have FASD? This database can be used by multiple healthcare professionals and will help us to work together and improve the care of children and youth seen at the Manitoba FASD 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.
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.
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.
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.
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.