SIBS-ONLINE
Supporting siblings and parents of patients with developmental and epileptic encephalopathies in Australia
A research project to test an online psychosocial program to support siblings and parents of individuals with developmental and epileptic encephalopathies (DEEs). DEEs are conditions which cause epilepsy and impacts on learning.
Siblings of patients with DEEs such as Dravet Syndrome, Lennox-Gastaut Syndrome, West Syndrome, and many others, face unique challenges such as extra caregiving responsibilities, anxiety and distress, an impacted social life and a lack of formal support in Australia. Research shows that siblings in particular wish to:
- Connect with other siblings who are experiencing the same challenges and,
- Talk to their parents about how they are feeling.
What does this research aim to achieve?
What is involved?
We invite you to help us test run a six-week, online program called SIBS-ONLINE designed to help siblings and parents improve their communication skills, and overall mental health.
Parents and siblings will:
Complete the 6-week online program (one session per week)
Complete some surveys about your mental health, communication and experience with the program
Participate in an optional interview to give us more feedback about how to improve
Participants will be reimbursed for their time spent completing surveys and the interview.
Who is it for?
Siblings who are:
Aged 12-18 years
Living with a sibling diagnosed with a developmental and epileptic encephalopathy at least 6 months prior
Able to access a laptop, phone. or other device
Parents who:
Are a parent of a participating sibling
Living with a sibling diagnosed with a developmental and epileptic encephalopathy at least 6 months prior
Able to access a laptop, phone. or other device
The University of New South Wales Research Ethics Committee have approved this study (8910)
If you wish to read more detailed information about the study, download the participant information sheets below.
Participation information sheet for parents
- Format
- Size
- 329 KB
Participation information sheet for adult siblings
- Format
- Size
- 288 KB
Your affected child or sibling may be diagnosed with:
- Dravet Syndrome
- Lennox-Gastuat Syndrome
- West Syndrome/infantile spasms
- SCN1A or SCN2A related DEE
- Another DEE type
If I have questions, what do I do?
If you would like to know more about this study, please contact a member of the research team who will get back to you shortly.
Contact information
Leave us a message
Expression of interest
To express your interest in participating in this study, fill out the form linked below, or via the QR code.
