EXPLORING PARENT AND CAREGIVER PERSPECTIVES ON FRIENDSHIP AND PSYCHOLOGICAL WELL-BEING AMONG children WITH DOWN SYNDROME (university of regina, Remote)

A PhD candidate at the University of Regina is exploring friendship and psychological well-being in children with Down syndrome. The goal is to better understand the social networks of children with Down syndrome and provide information to develop targeted support to help them build strong social connections early in their school years, which may translate to lifelong friendships/friendship skills.

• Seeking parents and caregivers of children with Down syndrome in Grades 7 to 12 to share their views on their child’s friendships when they were in elementary school.
• Participants will complete an online survey (less than 30 minutes long).
• The survey will collect detailed information about children’s friendships, including the number of friends, time spent with them, and the quality of these friendships. It will also explore the children’s social skills, well-being, and the parents’ own mental health and parenting practices. 

Follow the link below to participate in the study.

Arts-Based Digital Knowledge Translation Tools or Parents of Children with Intellectual Developmental Disorders (university of alberta, Remote)

Researchers at the University of Alberta are developing educational resources designed to help parents of children with intellectual developmental disorders (IDD) navigate the uncertainty of emergency department (ED) visits. The study uses art and digital platforms to deliver health information through storytelling, aiming to improve parents’ understanding and reduce anxiety when seeking emergency care for their children.

• Parents of children with IDD are invited to provide feedback to inform the development of these arts-based resources.
• By participating, families will be helping to create resources that will benefit others in similar situation

How to Participate
Parents interested in participating can reach out directly to the research team at echokt@ualberta.ca for more information or to express interest.

This study is funded by the Canadian Institutes of Health Research and has been approved by the University of Alberta Research Ethics Board (Pro00062904).

For questions or more detailed information, please contact:

• Dr. Shannon Scott at Shannon.scott@ualberta.ca or 780-492-1037
• Dr. Lisa Hartling at Hartling@ualberta.ca or 780-492-6124

Physical activity in the down syndrome community (anglia ruskin university, Remote)

Researchers at Anglia Ruskin University, Cambridge, are conducting a study on physical activity and exercise in the Down syndrome community. The study aims to understand how much and what types of physical activity individuals with Down syndrome engage in, as well as the factors that influence participation.

• Seeking participation from parents or caregivers of individuals with Down syndrome and adults with Down syndrome (18+)

• Participants will complete an online questionnaire at their convenience:

  • Parents/caregivers survey: Up to 90 questions (approx. 40 minutes, with the option to save progress)

  • Adults with Down syndrome survey: Up to 100 questions (approx. 40 minutes, with the option to save progress)
    

  • Access the surveys by clicking the button below and selecting the ‘Canada’ folder

Topics covered include:

• Physical activity and exercise levels

• Accessibility of exercise programs

• Sociodemographic and socioeconomic factors

• Education access and quality

• Health status and perceptions

This study has been approved by the Faculty of Science and Engineering Research Ethics Panel at Anglia Ruskin University and complies with GDPR (2018). Results will contribute to academic research and may be presented at conferences or published in peer-reviewed journals. Participants can request a summary of the findings.

For more information or support, please contact Ruby Elizabeth Cain at rc993@pgr.aru.ac.uk

PROMOTING BRAIN HEALTH-IDD VIRTUAL COURSE FOR ADULTS WITH INTELLECTUAL DISABILITIES (CAMH, Remote)

A group of researchers at the Centre for Addiction and Mental Health (CAMH) are studying a virtual education program for aging adults with intellectual and developmental disabilities (IDD), family caregivers, and service providers from across Canada. This online course is designed and delivered by adults with IDD, alongside medical and mental health experts specializing in the care of adults with IDD. 

Who Should Attend?

• Adults with an intellectual and/or developmental disability aged 40 years or older 

Dates: Every Tuesday, March 25 to May 6, 2025 | 1:30-3:00pm Eastern time 

Program Highlights:

• Attend seven weekly 90-minute interactive sessions at the scheduled time above
• Receive a course workbook, with resources
• Learn about brain health and aging, and interact with other adults with IDD across Canada
• Be interviewed three times (about 40-50 minutes each time)
• Before the course, at the end of the course, and 14 weeks after the end of the course
• Receive a gift card at the end of the study for participating

What participants are saying:

“I liked the course, and if there were more courses on similar topics in the future, I would definitely do it again…The course taught me to stop and listen to my brain…If you are feeling overwhelmed…stop and take the time to move…”

“…it was a lot more fun than just lectures. There was time for movement, there was mindfulness activities, and a lot of extra things that I didn’t expect…I got to learn what other people thought about the program, while they were answering the breakout group questions.”

Participation is completely voluntary and will not affect any present or future services provided by CAMH. Any information collected for this study will be confidential.

For more information or support, please email BrainHealthIDD@camh.ca or call 437-328-6761.  

DOWN SYNDROME REGRESSION DISORDER CAREGIVER DISTRESS SURVEY (University OF SOUTHERN CALIFORNIA, Remote)

With help from a medical student at USC, researchers including Dr. Jon Santoro are seeking to better understand the multifaceted impacts of DSRD on caregivers and families. Understanding the extent and nature of caregiver distress in this context is helpful in developing support systems that alleviate caregiver burden and enhance family resilience. In addition, this information will be critical in communicating the need for research on DSRD to organizations like the NIH.

• Participants must be over the age of 18.
• Participants must have a child or a close family member with a possible or probable diagnosis of DSRD.
• Participants should be knowledgeable about the family member’s diagnosis, symptoms, and treatment plan.
• Participants will complete a short online survey that takes approximately 10 minutes.

Follow the link below to participate in the study.

For any questions, please email knchow@usc.edu or dsresearch@chla.usc.edu 

EXPLORING PARENT AND CAREGIVER PERSPECTIVES ON FRIENDSHIP AND PSYCHOLOGICAL WELL-BEING AMONG THIRD TO SIXTH GRADERS WITH DOWN SYNDROME (University OF REGINA, Remote)

A PhD candidate at the University of Regina is exploring friendship and psychological well-being in children with Down syndrome in Grades 3 to 6 to determine if this is a particularly critical period in their social development. The goal is to better understand the social networks of children with Down syndrome and provide information to develop targeted support to help them build strong social connections early in their school years, which may translate to lifelong friendships/friendship skills.

• Seeking parents and caregivers of children with Down syndrome in Grades 3 to 6.
• Participants will complete a 40 minute online survey.
• The survey will collect detailed information about children’s friendships, including the number of friends, time spent with them, and the quality of these friendships. It will also explore the children’s social skills, well-being, and the parents’ own mental health and parenting practices. 

Follow the link below to participate in the study.