EXPLORING PARENT AND CAREGIVER PERSPECTIVES ON FRIENDSHIP AD 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.

UNDERSTANDING MENSES AND MENSTRUATION IN PEOPLE WITH INTELLECTUAL OR developmental DisabilitIES  (University OF CALGARY, Remote)

Researchers at the University of Calgary are investigating experiences of menstruation in individuals with autism, ADHD, and intellectual disabilities. They are seeking both caregivers and self-advocates to participate in a study, and hope to use this research to better understand menstruation in those with developmental and intellectual disabilities. This study has been approved by the research ethics board at the University of Calgary.

• Seeking self-advocate participants who have or have had a womb and are between 18-35 years old and caregiver participants who care for these individuals.
• Participants would complete a 30 minute survey and a 1 hour interview with a researcher. This interview can be online over Zoom or in-person.
• Participants will receive a $25 Amazon gift card to thank you for your participation.

Follow the link below to fill out an expression of interest survey and a researcher will reach out to you with more information.

For any questions, please email laura.stjohn@ucalgary.ca

Racialized Caregivers’ Experiences Accessing Healthcare and Social Services for Children with a Neurodevelopmental Disability  (Manitoba University, Remote)

Researchers at Manitoba University are conducting two surveys to better understand the experiences of racialized caregivers accessing healthcare and social services for children with a neurodevelopmental disability. Both studies have been approved by the Univerisity of Manitoba Research Ethics Board.

• Participants for both studies must live in Canada, be a member of an ethnic minority, and be the parent and/or primary caregiver of a child with a neurodevelopmental disability such as Down syndrome, autism, or ADHD.
• The first study requires completing a 35 minute online survey (linked below). Participants will be entered into a draw for a $50 gift card of their choice.
• The second study requires completing a 1.5 hour interview and drawing a journey map of meaningful places, people, and things. Participants will receive a $50 gift card of their choice.

To participate in the second study, or for more information, please email Michelle.Kee@umanitoba.ca

Project ASPIRE
Assessing Skills that Predict Independence and Readiness for Employment for Adults with Down Syndrome (DREXEL University, Remote)

Researchers at Drexel University are conducting a study to understand more about cognitive and behavioral factors that are associated with vocational outcomes and independent living skills among young adults with Down syndrome.

• Seeking family members of adults with Down syndrome between the ages of 18 and 39.
• Participation takes approximately 1.5 hours
• Participants will be asked to answer questions about their family member’s behavior, daytime activities, and your family’s background.
• Participants will be compensated for their time with a gift card.

  Questions can be directed to the study Principal Investigators, Dr. Nancy Raitano Lee
  and Dr. Gregory Wallace via email (ladder_lab@drexel.edu) or phone (215.553.7164).

  If you’re interested in participating in the study, please fill out the short survey linked below to determine eligibility.

YOU & ME: PONDERING PUBERTY
CO-CREATING AN ACCESSIBLE HEALTH RESOURCE WITH TEENS WITH IDDS (University of Toronto, Remote)

A graduate student in the MSc in Biomedical Communications program at University of Toronto with the support of Surrey Place is calling youth and teenagers with Intellectual and Developmental Disabilities (IDDs) accompanied by their support person or guardian to provide feedback on the creation of a puberty education resource.

• In-person and online focus groups with individuals with IDDs between the ages of 8-30 will take place during mid-May. Focus group participants will receive a $25 gift card.
• For individuals who wish to contribute to this project without participating in a focus group, an anonymous online questionnaire can be filled out.

To participate, email Geneviève Groulx at ponderingpuberty@gmail.com

GO BARRIER FREE: A STUDY OF GAPS AND BEST PRACTICES IN INFORMATION AND COMMUNICATION TECHNOLOGY ACCESSIBILITY SOLUTIONS
(New Brunswick Community College, Remote)

New Brunswick Community College is looking for people with disabilities and their caregivers to participate in a research study about accessibility standards. The study will examine accessibility standards in information and communication technologies, the built environment, and transportation to help identify and remove barriers in these areas as well as prevent new ones. You can choose how to participate:

• An online interview via videoconferencing
• An online survey

For full study details including more information about eligibility, click the link below.

To participate, please email Andrew.Urquhart@nbcc.ca

Down Syndrome and Autism Spectrum Disorder
Dual Diagnosis Study
(University of Toronto, Remote)

This study is seeking caregivers of children under 18 with Down syndrome, diagnosed with or awaiting assessment for ASD to better understand ASD in children with Down syndrome, defined care needed, and influence future clinical practices.

• Caregivers of children with confirmed ASD diagnosis will be asked to complete a detailed survey (Estimated time: 20-30 minutes)
• Caregivers of children in the process of seeking or awaiting an ASD assessment will be asked to complete a shorter survey (Estimated time: 5-7 minutes)
• There is also an opportunity for one-on-one interviews for caregivers to share their experiences in a more personal setting. (Estimated time: 45 minutes)

For more information, email DS.ASD.trp@utoronto.ca