Caregiver Perspectives on Epigenetic Aging in Children with Severe Neurological Impairment with Static Encephalopathy (SNI-SE)
2. Virtual Interview
Participate in a flexible virtual survey and interview about your child's health history and your experiences.
1. Eligibility & Consent
3. Optional: Reflection
Quickly confirm eligibility online and sign a digital consent form from the comfort of your home.
Share your perspectives on stress and health research to help us better understand the lived experiences of families.
What Participation Involves
Quick Facts
Study design:
Virtual semi-structured intereview
Goal:
Our goal is to ensure that future research on epigenetic aging in children with severe neurological impairment reflects the perspectives, priorities, and needs of families. What we learn from caregivers will help guide how this research is designed and how epigenetic aging information is explained and communicated to families.
Location:
Participation will be completely remote.Â
Time commitment:
About 60–90 minutes across all activities.
Honorarium:Â
All families will receive a $100 honorarium for their participation.Â
Why this Study Matters
Epigenetic aging is a new area of research, and we do not yet know what it could mean for children with severe neurological impairment. Understanding how caregivers view this type of information is important to ensure that future research is meaningful, understandable, and sensitive to the needs of families.
Objective 1:
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How caregivers understand and feel about epigenetic aging in relation to their child’s health.
Objective 2:
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What caregivers see as the potential benefits, limitations, or concerns of epigenetic aging research.
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Objective 3
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How caregivers would like epigenetic aging and research findings to be explained and communicated to families.
Findings from this study will provide important family perspectives to complement related research examining epigenetic aging in children with severe neurological impairment and help guide future research in this area.
Who Can Participate
You may be able to participate in this study if you meet the following criteria:
You are a parent or caregiver of a child with SNI.
1
Your family currently resides in Canada.
2
You are comfortable speaking and understanding English.
3