Research at RCC/SSCY

Family-centred service (FCS) is an approach to delivering health services to children and their families that recognizes that each family is unique, that parents are the experts on their children, and that treatments need to consider the needs of the entire family. There is strong evidence that families who experience ‘better’ FCS report better mental health, higher levels of satisfaction, and lower levels of stress in respect of their child’s services. In 1996 researchers at CanChild developed a tool (called Measure of Processes of Care, or MPOC) to measure parents’ experiences with health care services. Since then, MPOC has been used both in Canada and internationally to evaluate services provided by children’s treatment centres, hospitals, and community development programs. However, since MPOC was first created, a lot has changed in healthcare and the way that services are delivered. We have good reason to believe that the original tool may not reflect everything that today’s parents want, need and expect from the way that health services are provided to their children. Based on what we learned about what parents want and expect from healthcare services (from a previous stage of the study), we have developed an up-to-date questionnaire that will reflect, and measure, parents’ and caregivers’ experiences of the delivery of healthcare services. We would now like to test it out to see if it will give us information about the extent to which an organization’s services are family-centred, with feedback given to the organization.

The One-Handed Xbox Adapter is a 3D printed, snap-on device for Xbox controllers that uses levers and button extenders to transform all controller function to one side of the controller for one handed use. Additional joystick attachments can be used to manipulate the opposite joystick with the user’s thigh or residual limb. This research project aims to identify how children with a unilateral limb difference are currently playing videos games with a bimanual controller and evaluate whether or not this adapter is helpful in increasing participation satisfaction with playing video games in this population. The study will include 15-20 children aged 7-17 with a unilateral upper limb difference. Each participant will take part in a semi-structured interview regarding their current experiences with playing video games. They will then be introduced to the adapter and taught how to use it. Their initial performance and feelings about the adapter will be recorded, and then they will take the adapter for a home trial. During the home trial, they will be asked to use the adapter every day for 7 days and keep a record. After the home trial, their performance and feelings about the new adapter will be recorded again, and they will participate in another semi-structured interview regarding their experience with the adapter. The findings of this study will help to inform possible improvements to the adapter, as well as the future treatment provision for children with upper limb differences who want to play video games.

Level up! Adaptive Gaming for Children with Upper Limb Differences (PDF)

Collaboration Station is a new interactive web-based platform developed with families, for families, at SSCY. Its goal is to encourage the exchange of important experience-based knowledge through stories, which our previous research showed was a priority for both families and clinicians interested in improving family centered research and care. We now seek to understand the experiences of neurodiverse youth, their siblings, and their parents or guardians through storytelling within the living lab. We hope to create a supportive online community where individuals share and learn from the experiences of others, across the categories of fun, function, friends, future, function and fitness. To start, we are seeking 30-40 neurodiverse youth who have received services at SSCY, their siblings, and parents, to register as a Collaboration Station user, and share their short stories each month for over 6 months. We will create a creative resource to share the findings at the completion of the study. We aim to create an accessible way to engage and understand families’ lived experiences, and to share this information widely to encourage family centered care and research, and shared learning through experience.

A Living Lab for Pediatric Development and Rehabilitation Research Innovating on Knowledge Translation for Family-Centered Car – phase 2 (PDF)

Play is an important activity for children. Almost all children play, but what is play? It is not easy to define play. In the past, people believed that children played to burn their energy. Now, we know that play is important for children’s growth and development. Some children with disabilities may experience barriers to play. We have some theoretical models of play. But they are not complete. They do not look at play as a whole. Some models are just about playfulness, and some are about playing with others. Play is a child’s right and ALL children should be able to play. This project aims to define play and identify features that are important in helping a child with a physical disability fully engage in play. Having a model that defines play helps us think about play and the different aspects of play. Then, when a child cannot play, we can find the part that is not working and fix it. We want to introduce a model of play in this project. We want to edit and complete it in three steps. So, as the first step in this project, we will ask parents and children with physical disabilities about things that help or do not help them play!

Please see the attached poster!

The role of technology in facilitating play for children with physical disabilities development of the Dice Model of Play (PDF)

Social connectedness, which refers to a sense of belonging to an individual or group, is a central human need. It is a known protective factor for mental health and well-being, and prevents youth from doing risky things, which has lasting effects into adulthood. The COVID-19 pandemic has made it tough for kids to feel connected, and we think it might affect them for a long time.

We want to gather information to create a toolkit that supports social connectedness and we want to include the perspectives of children with disability in this toolkit. This toolkit will help kids in Grades 6, 7, and 8 feel more connected enhance their mental health and well-being. We will ask kids to join in and share their thoughts through three interviews and other art-based activities. The toolkit will be made with the help of kids, and we will try it out during the study to see if it helps. Participants will have the option to take part in virtual or in-person interviews and they will receive a gift card for each interview they participate in.
Please contact ingauge@umanitoba.ca for more information.

SSCY CM FEB 2024

Autism is a neurodevelopmental condition that one in 50 Canadian children experience. Autistic people have a range of abilities and challenges that differ from person to person and also within an individual over their lifetime. The lack of a clear prognosis often makes it difficult for families and specialists providing care for autistic people.

The Pediatric Autism Research Cohort (PARC) study will be one of the world’s largest studies aimed at finding out the care needs of children with autism. PARC will include 1,000 children across all its sites. These include its four existing locations in Hamilton, Ottawa, Kingston, and Sudbury, as well as new participants from autism clinics in Winnipeg, Edmonton and Victoria.

This study will collect data every six months through PARC’s online platform, from the time of diagnosis to children’s early school years. Caregivers will answer surveys gathering information on the child, family background, services they receive and their environment. Families will also receive a report describing their child’s developmental progress. By tracking children’s progress, the PARC Study also aims to gather evidence on what to expect as children with autism develop. This will help clinicians and families to better co-ordinate their efforts when planning care.

0123-PARC-flyer-Manitoba SM

The aim of this study is to understand the experiences of older children who are new Power Mobility Device (PMD) users. The study purposes are to: describe individual sense of well-being as reported by children who receive their first PMD, determine changes in home and school participation aided by use of a PMD, explore caregiver and educational support persons perspectives on the introduction of the PMD on the child’s home and school participation. We will follow participants over a 6-month period. We will include; one child (age 7-21) who is receiving their first PMD from RCC and who is currently a manual wheelchair user, one or more family members, interviewed together as a family unit and one teacher or educational assistant. Semi-structured interviews will be conducted with the parent and child at three points in time in person. One semi-structured interview with the teacher or educational assistant will be conducted virtually using the Microsoft Teams platform at one point in time. All questions are customized for each respondent related to mobility, independence, behaviour, peer engagement, participation, self-confidence. At the conclusion of this study, we expect outcomes at the child/family and service delivery levels. We will gain a better understanding of the importance of independent mobility in the lives of older children who had previously been dependent for mobility. Findings will also contribute to improved service delivery by better understanding of the goals, impact, and opportunities to increase participation and well-being through appropriate PMD prescriptions leading to more children with increased independent mobility opportunities.

For more information, please contact Dr. Elizabeth Hammond at ehammond@rccinc.ca

Physical activity is an important aspect of healthy childhood development. By participating in leisure activities, such as riding a bicycle, children can improve cardiovascular fitness, strength, and bone density. In addition, engagement in leisure activities provide a child with the opportunity to interact with their community environment, learn social skills, and establish meaningful relationships with family members and peers. For many children, learning to ride a bicycle provides a gateway to lifelong recreation. Children living with cerebral palsy or other neuromuscular conditions may have difficulty performing the purposeful movements required to ride a traditional bicycle due to weakness, spasticity, contractures, or decreased balance. Pyschological barriers to biking might include low levels of self-efficacy and perceived physical competence. The aim of this study is to develop an adaptive bike assessment procedure designed to track improvements in the physical performance of riders. The findings of this study will be used to develop evidence informed set of assessment tools and protocols for evaluating the impact of adaptive cycling on the physical and psychosocial function of children with neuromuscular conditions.

For more information please contact: Dr. Jacquie Ripat at jacquie.ripat@umanitoba.ca

The Early Motor Clinic (EMC) started in 2019 for early identification of cerebral palsy (CP) due to international recommendations. The goal was to avoid delays and provide early support for children suspected of having CP in Manitoba. However, the EMC has been seeing a variety of children with different conditions such as autism and other genetic conditions. We want to understand the conditions that children coming to coming to the EMC face and if delays in motor skills could indicate conditions other than CP. Our goal is to figure out how many children referred to the child development clinic have been to the EMC since 2019. We will be looking at the main diagnoses, how many needed referrals to specialists, and what tests were done. We are doing a study by reviewing around 140-150 electronic medical records from EMC, sorting them into groups such as CP, autism, and other genetic conditions. Using descriptive statistics will help us improve at diagnosing conditions. This includes understanding that delays in motor skills could be a sign of other developmental conditions, not just cerebral palsy.

About 2.5 million Canadians have a rare disease, and the majority of these individuals are children. Rare diseases are hard to diagnose because many people, including some healthcare providers, aren’t familiar them. Because of this, parents and caregivers of children with rare diseases face many challenges when trying to find a diagnosis for their child. Past research tells us that parents want more information and support from their healthcare providers and would like to be connected with other families who have gone through a similar journey to diagnosis. However, we are still missing information from Canadian parents and caregivers at a larger scale. We also do not know how demographic factors like background, location, level of schooling, and other factors might affect the experience of parents and caregivers. In our study, we hope to focus on Canadian parents and caregivers who have gotten a rare disease diagnosis for their child, or are still trying to find a diagnosis. We want to learn about their experiences with healthcare providers, how they handle finding and/or getting a diagnosis for their child, where they get support and information from, and how different factors like location, background, or level of schooling might affect their experiences. This study could help us understand the needs and challenges that parents face, and it might also help us create better resources for them. It will show us how different parents’ needs are in the Canadian healthcare system.

This national survey will help us understand how groups of people involved in child development and rehabilitation connect with others to share and use knowledge. The findings will be used to create strategies to support connections that help move knowledge into action. The overall goal of this work is to improve families’ access to safe, effective health care and knowledge.

This study focuses on understanding how we can adapt and prepare the BRIGHT coaching program for use in healthcare settings. BRIGHT Coaching is a program for parents or caregivers who have a child on a waitlist for a child development intervention, assessment, or diagnosis. So far, it has only been available to families as a research study. BRIGHT Coaching was developed for parents or caregivers of children between 18 months and 4 years old who are showing signs of having a developmental delay or who have received a neurodevelopmental diagnosis and are waiting to receive services. Parents or caregivers complete one-to-one virtual sessions with a coach, who guides participants through the BRIGHT Coaching curriculum and provides support over the course of about 4-6months. The coaching helps parents or caregivers learn about child development and about how to navigate child development services. It also helps them reflect on and enhance family and personal resilience. The current project seeks to work with and learn from researchers, family members, health care organizations, and providers to understand the barriers that need to be addressed before the program can be used more broadly, as well as resources that are available to support moving BRIGHT Coaching into practice within different organizations. Specific strategies will be developed to support uptake of the program within each of the four provinces that took part in the BRIGHT Coaching research study (Manitoba, British Columbia, Quebec, and Nova Scotia).

The ‘F-words for Child Development’ (Functioning, Family, Fitness, Fun, Friends, Future) provide a family-centered, strengths-based, holistic approach to child health and development. For the study, you will choose to complete one of two versions of the online F-words Foundations Course: (i) the self-paced version; or (ii) an online facilitated version that involves the self-paced version plus weekly one-hour online discussion groups with other caregivers and service providers. You will also be asked to complete a questionnaire at baseline, program completion, and three months post-completion. A subset of parents and service providers will be asked if they would like to participate in an optional interview upon completing the program. Please contact Sarah, hopmansn@mcmaster.ca if you would like more information about the study.

Part of the process to understand whether a child has Fetal Alcohol Spectrum Disorder (FASD) involves asking caregivers or teachers to provide information about the child’s skills and behaviours. This information is collected using various questionnaires. These questionnaires can sometimes be challenging to complete, which can cause delays in diagnosing the child and providing helpful services. This study will look back at assessments done in the Manitoba FASD Centre over the last 14 years to see what kinds of difficulties people had when filling out the questionnaires. This study will also look at whether certain factors – like the child’s age or the caregiver’s relationship with the child – affect how people respond to these questionnaires. The results of this study will help decide whether new or different ways of collecting information (like new questionnaires or assistance from staff) should be used at the Manitoba FASD Centre. This research will also tell us what kind of assistance would be helpful to offer people to make it easier to complete the assessment questionnaires.

Immediately after delivery, babies are provided with warmth and suction to remove any secretions that may be blocking their airways. Babies born prematurely require in addition, some oxygen to help them breathe properly after birth. Currently, we give between 30% to 60% oxygen at the Health Sciences Centre. We are conducting this research to determine the most appropriate amount of oxygen to use when we assist preterm babies following their delivery, whether 30% or 60%.
We will be enrolling babies born between 23 to 28 weeks of pregnancy, who were given either 30% oxygen or 60% oxygen in the first 10 minutes of life. The study will not require additional tests or investigations, we will only collect the results when they are done in the hospital. Additionally, we will contact parents of participants at 18 – 24 months of age either in person or via telephone, to conduct follow-ups. These follow-ups will be to find out how the babies are developing. The findings of this Canada-wide study will help us determine the most appropriate oxygen support to give preterm babies in the first 10 minutes of life.

The Manitoba FASD Centre offers an 8-week educational series on Fetal Alcohol Spectrum Disorder (FASD) called Building Circles of Support (BCS) for people who support children and adolescents with FASD. This study will use surveys and questionnaires to measure how BCS changes participants’ understanding of FASD and child behaviour as well as caregivers’ thoughts about themselves. We also want to find out who benefits from participating in BCS and learn about gaps between what participants were hoping to learn and what the sessions offer. Results of this study will be used to understand the benefits of participating in BCS, to determine whether BCS could be useful for other people, and to help develop and improve education and support services for caregivers of children and adolescents with FASD.

Fetal alcohol spectrum disorder (FASD) describes a wide range of brain and developmental differences that may be found in children with prenatal alcohol exposure (PAE). The development of new tools for early identification of children at-risk for FASD will facilitate access to early intervention programs that can change the lives of children and their families impacted by FASD. This study is validating a new biomarker tool and assessment process that has the potential to aid in the diagnosis of children where there are concerns about their development in the context of PAE. The study team, using the Translating to the Community (T2C) protocol, will recruit children and youth who have confirmed PAE and who have been seen for comprehensive multidisciplinary assessment at the Manitoba FASD Clinic. Validation of this tool and process will be helpful to clinicians who may see a child who may be at risk due to prenatal exposure to alcohol. It will inform new processes of identification of at-risk children, particularly where PAE is suspected. The study will improve our understanding of the many factors that determine both risk as well as resilience in FASD outcomes. Equally as important, this study will inform a range of health and community programs to support best outcomes for these children and their families.

Lay summary for website

A manual wheelchair can be hard to push long distances and up hills, creating shoulder problems. A power wheelchair requires much less effort, but it is larger and very heavy, making it difficult to use in small spaces and transport in a vehicle. A power assist device (PAD) is a small electric motor that can slide on and off a manual wheelchair. When the PAD is on, the motor turns a drive wheel that pushes the wheelchair forwards making it much easier to propel. When the PAD is off, the wheelchair can be used just as it normally is. The purpose of this study is to explore what children, their parents, and their therapists think about using a PAD on their manual wheelchair. We are interested in learning what they like or don’t like about the PAD; what it is like learning to use a PAD; and the kinds of activities a PAD might be helpful with. This information could be helpful to children and their families when they are considering what kind of mobility device best suits their needs, and to therapists who recommend mobility devices and provide training in how to use them for children. The study involves 2 to 3 sessions where a therapist will introduce the PAD to the child and provide some training on how to use it; the researchers will then conduct an interview with the child, the parent, and the therapist to ask them each about their experience.

The threat of the COVID-19 pandemic has increased the challenges experienced by families of children with disabilities as well as widened the gaps in our healthcare system for those who are disabled. The pandemic has changed how children with disabilities receive care including a greater focus on the use of virtual care. We are conducting a research study to understand how the changing care practices during COVID-19 has affected families of children with disabilities and to hear from families what care should look like for their child going forward and for future health crises. We will develop a model of care based on the recommendations of families of children with disabilities as well as service providers of the ways to improve services and supports for families for care in current times and future health crises.

We would like to hear from families about their preferred healthcare and social service needs, as well as their recommendations of the ways to improve services and supports for children with disabilities. Families will be invited to take part in individual, family and focus group interviews. Service providers will also be asked to share their views on ways to improve services and supports for families of children with disabilities. Families and service providers have the option to take part in virtual or in-person interviews.

If you would like more information on this project please contact ingauge@umanitoba.ca

Adapted bicycles provide opportunities for many children with different abilities to ride a bicycle, in ways that may not be possible with traditional bike. These opportunities allow children to develop many physical skills and abilities, and also offer opportunities to make friends, feel good about themselves, have fun and participate in their community. All of these opportunities are important for increasing children’s health and wellbeing. The goal of this study is to understand the experiences of children who use adapted bicycles and the influence adapted cycling has on their social connections and quality of life. The findings from this study will be used to help improve future programs and services that support children’s opportunities to ride a bicycle.

For more information contact:
Dr. Jacquie Ripat
Phone: 204-789-3303
Email: jacquie.ripat@umanitoba.ca

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.

Play is the main occupation and a fundamental human right for children. Children need to play to develop their physical health, social skills, cognitive skills, creativity and more. Children living with disabilities can have fewer play opportunities because of the need to devote time to other therapies and the overall impact of the barriers they face. We propose that a social robot intervention can help support children living with physical disabilities to engage in play. Lab studies have demonstrated that social robots can successfully support children with disabilities to learn and engage with tasks. For example, these robots have shown they can motivate children in their therapies and help foster group interactions between children and their peers. Typically, these robots are designed alongside therapist professionals, however, we take a User-Centered approach and shift our focus on the families. We want to learn their perspective to ensure we meet people’s real-life social and pragmatic needs and constraints. In this project, we aim to learn about the primary concerns of family units or their perceived barriers to using a social robot, how families imagine using and playing with it, and the features most important to them. These results can support technologists in designing an effective social robot for facilitating play for children with physical disabilities. We approach this by conducting a workshop with family units where they will get a brief demo of available on-the-market robots and participate in exploratory creative exercises such as building or drawing a robot design.

The purpose of this research is to identify the KT (Knowledge Translation) network in Canada in the field of child development and rehabilitation (CD&R) as the first step toward recommending strategies to strengthen the network. The goal of this second phase of the study, is to examine the role of social interactions to move evidence (e.g., research, experience, or other ways of knowing) into action in health care decision-making, health care services, and research. Our overall goal is to improve KT, so that Canadian children and families requiring child health and rehabilitative services have timely access to the safest, most effective healthcare.

The goal of this project is to learn about the executive functioning skills of children and youth who were exposed to alcohol before birth. Executive functioning is the ability to plan, problem solve, manage one’s behaviour and feelings, and pay attention. We hope to learn about whether caregivers’ reports of executive functioning are similar to children’s and youth’s performance on tests of executive functioning. Research from the United States and the United Kingdom have found that caregiver reports of executive functioning are not related to how well a child performs on tests of executive functioning. Currently, there is no Canadian research on this topic. For this study, we will use the answers from a questionnaire on executive functioning that caregivers filled out when their child was seen at the Manitoba FASD Centre. We will also use the test results of executive functioning tasks that were completed with the psychologist at the Centre. We will then compare the two sets of information to see whether they are related (i.e., the answers on the questionnaire are similar to the test results) or if they are different. The results of this study will be used to help us better understand the executive functioning skills of children and youth who were exposed to alcohol before birth in Manitoba. We can also use this information to help improve the services we provide at the Manitoba FASD Centre.

Researchers at the University of Manitoba are looking for mothers of children, between 6-11 years of age, with Autism Spectrum Disorders who are interested in completing a brief online survey investigating the strengths of these families as part of a new and exciting study! The purpose of this study is to learn about the strengths of families of children with Autism Spectrum Disorders (ASD), as well as their parenting and family needs. In this study you will be asked to complete a survey on parenting, your family, as well as yours and your child’s development and characteristics.

Standard of care for outpatient pediatric developmental and rehabilitation care is for the family and the healthcare provider to meet in person. Services may be provided in healthcare centres or community locations like the child’s school or home. The COVID19 pandemic required a fast change in healthcare service delivery. In March 2020, physical distancing measures were put in place in Manitoba, Canada. In response, pediatricians and therapists had to reconsider the way they delivered services to children and families. Starting mid-March, services at SSCY Centre began to be provided via telephone and videoconferencing. This method of service delivery was not an option before the pandemic. The purpose of this project is to understand the barriers and facilitators of videoconferencing for pediatric rehabilitation during the COVID19 pandemic. To do this, we will talk to patients/families and service providers to hear their experiences. We will compare our findings to known implementation frameworks for this type of service delivery. This information and comparison will be used to improve service provision during COVID19.

We are conducting a study to help improve and evaluate the Stepping Out on Saturdays (SOS) program at the Specialized Services for Children and Youth (SSCY) Centre. We want to hear from the children participating in the program and understand their perspectives and ideas. We will trial methods of capturing the perspectives of the children, in ways that suit their strengths. All of the children enrolled in the camps are eligible to participate in the study. Three student researchers will attend the SOS camp. Throughout the day, the children who consent to participate in the study will be asked to share their ideas and perspectives on the camp using words and/or a selection of arts and craft materials such as clay, markers and paint. No child will be recorded or photographed.

Researchers at the University of Manitoba and SSCY are partnering to evaluate the Building Regulation in Dual Generations (BRIDGE) Program, which is a new intervention designed for mothers who have preschool aged children and who are experiencing symptoms of depression. The primary goal is to learn how mothers’ own mental health, life experiences, and parenting styles influence the development of their child’s ability to regulate their own emotions, physiology, and behaviour. This project has two main objectives: 1) Administer a family-based skills training intervention for mothers experiencing symptoms of depression by providing 6 months of weekly, group-based therapy and parent skills training 2) Assess the impact of this intervention on measures of stress physiology, emotions, and family interactions by having families participate in 2 lab visits in which these measures will be assessed. Information gained through this project will help to influence the further development of effective parenting programs targeted at promoting child and family resilience.

Craniosynostosis is a congenital condition affecting 1 in 2100-2500 births and is defined as the premature fusion skull. Craniosynostosis is most often treated with surgical intervention between 6-12 months of age to unlock and reshape the skull to avoid neurological impairment including increased intracranial pressure and neurodevelopmental delay. Current practice in Manitoba is to refer all children who undergo surgery for craniosynostosis to developmental pediatricians for neurodevelopmental evaluation. Recent studies have described very good development outcomes for children following craniosynostosis surgery, with the majority of children being within the normal range for neurodevelopment. Considering the suspected good functional outcomes of these patients and the limited resources available for child development assessment, we propose a descriptive study of the developmental outcomes of preschool children requiring craniosynostosis surgery in Manitoba. In a historical chart review, the developmental outcomes of all patients who have been assessed at the Child Development Clinic at SSCY (Specialized Services for Children and Youth) after craniosynostosis surgery between July 1st, 2016 and December 1st, 2021 (estimated n=140) will be described. The frequency of moderate and severe developmental delay and referral to Children Disability Services will be reported. The results of this study will help inform an appropriate follow up strategy for children undergoing surgery for craniosynostosis in Manitoba.

This study is looking for parents of children with autism spectrum disorder (ASD), attention-deficit/hyperactivity disorder (ADHD), and co-occurring ASD and ADHD (ASD+ADHD) – as well as families with typically developing children. Participants must be parents (or other caregivers) with at least one child between the ages of 2 and 18 years, who reside in Canada or the United States. Using an online survey, we want to know about your experience as a parent, including factors that may affect parenting stress and family quality of life, as well as your child’s development. This survey will take about 30-45 minutes to complete. By taking part in this study, your contribution will help to improve the lives of families and allow clinicians to more effectively provide parent-child support.

Please email Dr. Jen Theule if you would like to learn more at jen.theule@umanitoba.ca or call 204-474-7417

Cerebral Palsy (CP) is the most common cause of childhood physical disability. Early CP diagnosis and intervention are crucial to improving outcomes in these patients. Constraint-induced movement therapy (CIMT) has become a standard therapeutic intervention for children with unilateral CP. CIMT utilizes restraining of the unaffected upper limb to stimulate the use of the paretic upper limb enhancing neuroplasticity in the affected cerebral hemisphere. Transcranial magnetic stimulation (TMS) is a safe non-invasive technique that stimulates the brain using repetitive magnetic pulses to enhance neuroplasticity. TMS has been shown to improve symptoms of children with neurodevelopmental disorders such as CP. It is predicted that a combined therapy that uses CIMT and TMS is could improve mobility in children with unilateral CP. To determine if combined therapy is beneficial to children with CP and if use of this therapy is feasible for families, we would like to conduct a feasibility trial. In this trial we will enroll 10 children who have unilateral CP, they will either receive:

1. CIMT and TMS or;
2. CIMT and fake TMS, fake TMS consist of a child sitting near the TMS machine but not receiving any TMS.

The aim of this project is to determine if it is feasible to conduct a large randomized control trial to compare the effects of combined CIMT and TMS versus CIMT and fake TMS. We also hope that by conducting this trial we can identify any benefits that the addition of TMS may have in children with CP.

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
Phone: 204-474-6660
Email: Mandy.Archibald@umanitoba.ca

The SPACE program is an 8-week online parenting program. We are recruiting parents who have 3-4-year-old kids are are expecting increased parenting stress during the pandemic. Our goal is to learn about the benefits of emotion focused parenting strategies and to promote family wellbeing. Those who join our program will be put into one of the three possible groups: (1) The 8-week SPACE program includes videos and parent-child activities which teach parents to reduce stress; (2) The 8-week SPACE program plus weekly online drop-in-groups; (3) A list of community family support services. Families that participate will be asked to complete an online assessment before and after participating and can earn up to $100.

We are conducting a research study to address the behavior of elopement among children with autism spectrum disorder. Elopement occurs when an individual who requires some level of supervision to be safe, leaves the supervised and safe area that they are in and is exposed to potential dangers. This includes bolting away when nobody is looking, wandering off when their supervisor is distracted, or purposely avoiding being seen to leave the supervised area. Elopement can be stressful for families and this behavior can negatively affect their everyday life. We are recruiting caregivers of children between the ages of 2 and 12 years old who have been diagnosed with autism spectrum disorder and who have eloped before to participate in our study. Our participants will complete an anonymous, online questionnaire about their experience with elopement. The purpose of this project is to determine the impact that elopement has on families, what families currently do to help with the behavior, and whether or not families are getting the support that they need. If we determine that this behavior is negatively affecting families’ lives and that support is low, we can then take the next step to determine how we can better support families in need.

For more information, please contact Jenna Heschuk at heschukj@myumanitoba.ca

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.

Many children struggle with “picky eating”. When eating habits become too restrictive and start to impact a child’s growth, development, and functioning in everyday activities, this can be understood as Avoidant Restrictive/Intake Food Disorder. There are many different factors that impact how and why a child struggles with restrictive eating behaviours. Previous research has identified low appetite, low variety (typically related to sensory sensitivities), and fear or anxiety related to eating as three primary subtypes of this disorder. Our study is reviewing the characteristics of clients and families who are seen at SSCY and Health Sciences Centre for help with restricted eating behaviours and how well they fit into these previously identified subtypes. By understanding the characteristics of clients and families who have been seen through psychology at SSCY and the types of services they have received prior to their involvement psychology, we hope to be able to tailor and create treatment services that are patient-centered and individualized to the needs of different clients presenting with different feeding concerns.

Autism Spectrum Disorder (ASD) is a developmental disorder that manifests early in life. Children with ASD experience deficits in social communication as well as restricted, repetitive patterns of behavior, interests, and activities. SSCY Centre is the main referral centre for evaluation/treatment of children with presumed and confirmed ASD in Manitoba and captures over 90% of children <6 years diagnosed with autism spectrum disorder in Manitoba. This project aims to gain an understanding of the families that come to SSCY centre for ASD diagnosis and how we can help with supports, and interventions.

Little is known right now about how children with Autism in Manitoba compare to children with Autism in the rest of Canada. This study will look at all the children diagnosed with Autism at the SSCY centre from March 2016 to March 2021. We will look at demographic information and what other diagnoses our children received, as well as what resources they were referred on to. This will help for future planning and to make sure that the programs we are offering at SSCY are best suited to the unique needs of our unique children!

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.

Parenting children with greater health, developmental, or behavioral 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.

Cerebral palsy is the most common physical disability in children. These children can experience difficulties in moving, maintaining posture, solving problems, talking and eating. The purpose of this study is to describe the current prevalence of cerebral palsy in Manitoba. We hope to better understand how many children living in Manitoba are affected by this condition, the birth characteristics of these children, and the extent to which their day-to-day function may be impaired. This study will also help us identify where in Manitoba children with cerebral palsy currently live and if there are any differences in the services that we offer to children living in different areas in Manitoba. The information gained from this study will help us better understand the population of children who currently suffer from cerebral palsy in Manitoba. Understanding the prevalence of cerebral palsy, as well as the characteristics of disease experienced by Manitoban children will help inform the treatment and services offered to children with cerebral palsy and their families in Manitoba.

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 neurodevelopment 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.

Autism Spectrum Disorder (ASD) is a disorder that affects how children socialize, communicate, and behave. in Canada, approximately 1/66 school-aged children have ASD. It is important to be able to diagnose children with ASD, because once a child is diagnosed, the healthcare team can help the child connect with the right supports in order to reach their full potential.

ASD is diagnosed clinically, which means there is no specific blood test or medical image that can give the diagnosis. Instead, doctors and healthcare teams make the diagnosis, sometimes with help from a diagnostic tool. The ADOS-2 is an in-person diagnostic tool often used for this purpose. During the COVID-19 pandemic, however, in-person assessments have been minimized to keep families and healthcare providers safe. The Tele-ASD-Peds is a diagnostic tool developed at the Vanderbilt Kennedy Centre in Nashville, Tennessee, for virtual diagnosis of ASD. If this virtual took is found to be effective, it could be used not only during the pandemic, but also in the future for patients and families who live in northern or remote communities. Virtual appointments may also make diagnosis happen more quickly, which could allow the child to connect with supports sooner. The goal of this study is to describe SSCY Centre’s initial use of the Tele-ASD-Peds during the COVID-19 pandemic, and to consider how the tool helps in the overall clinical diagnosis of ASD. This study will also add to the ongoing research regarding the use of the Tele-ASD-Peds.

Cerebral palsy (CP) is the most common motor disability in children. Estimated prevalence across the globe ranges from 1.5 to more than 4 per 1000 live births. Children with CP are prone to osteoporosis, a disease characterized by low bone mass and deterioration of bones. Bone fragility is associated with multiple risk factors, including nutritional problems, use of antiseizure medications, and limited mobilization, all of which can be present in children with CP. Osteoporotic bones are weaker and prone to low-trauma fractures. Fractures significantly affect the health of children with CP, causing pain, hospitalization, and missed days at school. The prevalence of osteoporosis, its risk factors and its natural history is poorly understood within the pediatric CP population. Also, no published guidelines currently describe required monitoring of osteoporosis during routine follow-up of CP children. The goal of our study is to determine the prevalence and predictors of osteoporosis in children with CP living in Manitoba. These findings could be used to improve osteoporosis prevention strategies in this high-risk population.

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.

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.

Objectives:

1. To determine the frequency of children diagnosed with HIE in Manitoba who underwent therapeutic hypothermia (TH).
2. To describe physician’s compliance to current guidelines for the initiation and monitoring of TH.
3. To determine the frequency of neurodevelopmental impairment among pre-school children diagnosed with HIE in the neonatal period.
4. To describe the frequency of utilization of allied health services among children diagnosed with HIE.

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.

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.

View our results poster here!

Research in our lab has shown that parents of children with neurodevelopmental disorders (NDDs) experience greater parenting stress, especially in light of the COVID-19 pandemic. The SPYKids Program seeks to provide a first step to encouraging hope for parents of children with NDDs on waitlists and improve their ability to cope with family stressors through a single session consultation model. SPYKids has been designed for families on waitlists at local organizations, such as Specialized Services for Children and Youth (SSCY), St.Amant, MATC, and KIDTHINK. The purpose of this single session intervention (SSI) is not to completely resolve challenges but to provide parents with some skills, encouragement, and support in the interim while waiting for more comprehensive services. In the summer of 2021, we worked with a team of parents with lived experience of lengthy waitlists for specialized services to identify specific needs of families. These parents discussed barriers and emotions related to accessing assessment, diagnosis and treatment services. Through several collaborative sessions, they expressed support for the development of a single session intervention to help address urgent family mental health and parenting needs while families are on waitlists. The resulting program is now ready to be piloted with the support of community agencies like SCCY. Once the program has been shown to be a feasible approach to supporting families, we will conduct additional funded studies to evaluate the efficacy of the SSI.