Read information for parents about this research
Read the Easy Read Information about this research
What is the research about and what will I be asked?
We want to learn about times when things were really hard for you – when it felt like a “crisis.”
We also want to know:
What kind of help you needed
What support worked well and what didn’t
How you think services can be better for young people and families.
You don’t have to answer any questions you do not want to, what we talk about is your choice.
Important: Please don’t take part if you are in crisis or feeling very upset right now.
How will the interviews work?
We can meet in person, online, on a telephone call, or you can write your answers and send them to us. You can tell us what way you will feel most comfortable taking part. We will make sure you have what you need to be part of this research as it is so important we get to hear about your experience. The interview might take up to one hour. You can take breaks or stop at any time.
Would you like to take part?
You can choose if you want to be a part of this study or not. Please take your time to decide. If you are interested in taking part or have any questions, you or someone helping you can phone or email the project manager Carly at research@nda.ie or 087 6712376.
Who is doing this research and why?
The National Disability Authority (NDA) is doing this research. The NDA gives advice to the Irish Government on how to make life better for people with disabilities.
This research is part of the Autism Innovation Strategy (2024). The Department of Children, Equality, Disability, Integration and Youth asked the NDA to do it.
The results will be written in a report. We will share it with the Government and other services that help children and families. The NDA will also share the results online on www.nda.ie. We hope people who take part in the research will come to the launch to see how their stories helped us.
This research has been checked and approved by a Health Service (HSE) ethics committee in 2025.
Can I change my mind?
Yes. You can stop at any time, for any reason. You do not need to explain. If you stop before we start working on the answers (analysis), we can delete your data.
What are the good things about taking part?
You may not get anything straight away. But what you share could help make things better for other children, young people, and families in the future.
What are the risks?
Talking about hard times can be upsetting. This is why we ask that people in crisis don’t take part right now. If you get upset, you can stop or take a break at any time. We will also give you a list of support services to contact if you need help.
Will my information be kept private?
Yes. We will keep everything safe and private.
Only the research team will see your answers.
Your name and other personal details will be changed in the notes.
We will keep your signed consent forms safely for two years, then destroy them.
Your answers (with your name removed) may be kept for 10 years for research purposes.
If you tell us something that makes us worried about your safety or the safety of others, we may need to share this information. We will talk to you about this first. We will only share information with people that can help.
Your data rights:
You have the right to:
1. Ask to see your data
2. Ask us to correct or delete it
3. Get a copy of your data
4. Make a complaint to the Data Protection Commissioner
We will not use your data for anything else or send it outside the EU.
Who can I talk to about this research or my data?
Project Manager
Dr Carly Cheevers
Senior Research Officer
Email: Carly.cheevers@nda.ie | Phone: 087 6712376
Data Protection Officer
Ms Evelyn Moore
Email: evelyn.moore@nda.ie | Phone: 01 60804093