Background

Neurodevelopmental disorders, also called NDDs, are conditions that impact a person’s developing brain. Many youth with NDDs also have behaviours of concern, such as violence towards themselves or others. This can be extremely challenging for youth with NDDs and their families. Most youth with NDDs have trouble getting enough sleep because they have a hard time falling or staying asleep overnight, or they wake too early in the morning. Not getting enough sleep can make behaviours of concern worse. Sleep education is used by doctors to help youth and their caregivers understand sleep problems and provide strategies to help youth get more sleep. However, there is no sleep education intervention for youth with NDDs who have behaviours of concern and their caregivers. Also, it is not known if sleep education for youth with NDDs and their caregivers helps improve the youth’s behaviours of concern.

We plan to co-design a sleep education intervention for youth with NDDs and behaviours of concern and their caregivers. We are looking for youth and caregiver partners to join our research team to help us create a new sleep education intervention for your with NDDs who have behaviours of concern and their caregivers. Youth and caregiver partners will be paid for this work. We think this sleep education intervention will help improve behaviours of concern in youth with NDDs. We will test it in a Developmental Pediatrics clinic with youth with NDDs who have behaviours of concern and their caregivers. If it is helpful, we will make this educational intervention free online and offer teaching to other doctors on how to best use it.

Roles and Responsibilities

Youth partners ages 8-18 years with lived experience of NDDs or who are siblings of individuals with NDDs and caregiver partners (including parents, grandparents, foster parents) will be invited to join the research team. The youth and caregiver partners will contribute their lived-experience knowledge about how to communicate with youth who have neurodevelopmental disorders and their behaviours of concern and their caregivers about sleep. Findings from the research will be shared with the youth and caregiver partners.

We are asking youth and caregiver partners to work with us in the following ways:

First, join a discussion group (in person or Zoom depending on preference) to help create a sleep education intervention aimed to youth with neurodevelopmental disorders and behaviours of concern and their caregivers. This initial discussion will take approximately 2-3 hours.

After the discussion group, they will be asked to review one or two versions of the sleep education intervention to approve the final design. This may include email, a follow up zoom meeting, or phone call (depending on preference). This feedback phase may take up to 7-8 hours.

Time Commitment

The first discussion group is happening in July 2023 and will continue throughout summer and fall 2023. The total time commitment is anticipated to be 10 hours over a three-month period.

Compensation/Reimbursement

Compensation will be offered at rate of $25/hour each to youth and their caregiver partners. If youth and caregiver partners prefer to attend in-person meetings instead of online, parking will be reimbursed.

To learn more or to apply:

Call or text the research team at (825) 454-8412 (Note: 825 is an Alberta area code)

Email Myka Estes, our research manager, at myka.estes@ahs.ca