Caregiver Advocacy for Behaviours of Concern in Clinical Settings
Summary
We want to talk to caregivers about their experiences talking to doctors about their child's behaviours. A lot of children with neurodevelopmental disorders, like autism, have unsafe behaviours. They may hurt themselves, be aggressive to others, or do things that put them in danger like running away. A doctor can help these children, but sometimes the doctors want or need to help with other problems before they help with these behaviours. If you have talked to a doctor about your child's behaviours, or have tried to talk about these behaviours with a doctor, we want to hear from you. We are talking with caregivers about how they talk to doctors about these behaviours, if there are any challenges, and what has helped. This will help us understand how doctors can better respond to these behaviours and support families.
Eligibility
Eligible ages: 18 to 99
Accepts healthy participants: Yes
Inclusion criteria:
1. You are the parent or the main caregiver of a child or youth aged 3–18.
2. Your child has a neurodevelopmental disorder (such as autism, global developmental delay, or a genetic condition) that greatly impacts their communication, learning, emotions, and daily life.
3. Your child has serious behaviours of concern, such as aggression, self-harm, running away, or damaging property.
4. You have been to at least one medical or clinic appointment in Calgary for your child in the past 12 months where behaviours of concern were discussed or could have been discussed.
5. You can speak and understand English.
Exclusion criteria:
1. You do not speak or understand English.
2. Your child does not have a neurodevelopmental disorder that greatly affects their daily life.
3. Your child does not have serious behaviours of concern, such as aggression, self-harm, running away, or damaging property.
4. You have not been to a medical or clinic appointment in Calgary for your child in the past 12 months where behaviours of concern were discussed or could have been.
Participate
Fill out the following form if you want to participate in this research
Collection of personal information
Your personal information is collected under
the authority of section 33(c) of the Freedom of Information and Protection of Privacy Act. If
you have any questions about the collection or use of this information, please visit our
Access to Information page.
Additional information
Contact information
Interested participants can contact the research team by email at amani.ahmed1@ucalgary.ca or by phone at (825) 454-8412 to learn more about the study or to express interest in participating.
Principal investigator:
Sarah MacEachern
Clinical trial:
No
REB-ID:
REB25-1398
External links