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SLEEP AND NEURODEVELOPMENTAL DISORDERS: TREATMENT BARRIERS AND FACILITATORS

12/11/2021
Shelly-Ann McMorris

Purpose of research
Did you know that between 50-95% of children with neurodevelopmental disorders (NDD) have behavioural sleep problems? Common NDDs include Attention-Deficit / Hyperactivity Disorder (ADHD), Fetal Alcohol Spectrum Disorder (FASD), and Cerebral Palsy (CP). These problems are called insomnia. Insomnia is when children have difficulty following bedtime routines, falling asleep, and staying asleep. Very few children with NDDs receive help for their insomnia, but it is treatable!  We are doing an online study to learn about parents’ experiences seeking and using the treatment for insomnia in their children with NDD. We want to learn what helps and what doesn’t help families’ access to and use of treatment.  This study is part of principal investigator Kim Tan-MacNeill’s dissertation research and is based out of Dalhousie University and the IWK Health Centre (Halifax NS). Ethics approval has been obtained from the IWK Research Ethics Board (REB #1018556). The supervising investigators are Dr. Penny Corkum (penny.corkum@dal.ca) and Dr. Isabel Smith (isabel.smith@iwk.nshealth.ca).

Who can participate? If you are a parent or caregiver of a child aged 4-12 years old who has ADHD, FASD, and/or CP as well as behavioural sleep problems (either currently or in the past), you can help us identify ways to increase families’ access to and uptake of treatment for behavioural sleep problems in children with NDD.

What is involved? This study will involve completing online questionnaires and participating in online focus groups. Participation should take no more than 2 hours of your time. The study is being conducted through the IWK Health Centre and Dalhousie University in Halifax, Nova Scotia. Focus groups will be scheduled using an online scheduling tool (e.g., Doodle poll). Eligible participants will be entered into a draw to win a $50 gift card for www.amazon.ca and will also receive resources on treating sleep problems in kids with NDD.

Location of Study All aspects of this study are done online, from questionnaires to the focus groups (which use secure software similar to Skype).

How Can I Join This Study To find out whether you are eligible to participate, we ask that interested parents complete our brief online screening questionnaire, found at this link: http://tinyurl.com/parentnddContact Information? For questions, please contact the study investigator Kim Tan-MacNeill at sleepndd@dal.ca or visit http://ndd.betternightsbetterdays.ca/

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