Read information for children about this research
What is this research about?
We are doing a research project to learn more about the support needs of autistic and/or disabled children and young people in Ireland, and the kinds of challenges they and their families sometimes face. The goal of this research is to help improve support services for children, young people and families.
We also want to explore circumstances when things get really hard for these families or feel like they’ve reached “crisis” point. We are interested in what supports children, young people and families need, and which services work well – or do not – during such times.
“Crisis” for these families may mean:
“any situation in which they feel they – or their loved one – need help urgently. […] a crisis can mean feeling unable to cope with their situation or keep themself or those around them safe. They – or their loved one – may also feel great emotional distress or anxiety.”
Crisis situations do not fall easily under a single definition as circumstances are so unique to an individual and to a family. They can be sudden and acute or can build up over time. For the purposes of this survey, we are interested in all situations perceived as being a crisis, or close to crisis point as a disabled/autistic child or young person or from the family side, while caring for their child or young person. However, please note that medical crises and supports for medical issues are not the focus of this research.
Who is conducting this research?
At the request of the Department of Children, Disability and Equality, the NDA is conducting this research (Action 83 of the Autism Innovation Strategy, 2024). Although part of the Autism Innovation Strategy, the study is about children and young people with any disability, not only autistic children.
These interviews with children and young people are part of Phase II of this project. A parent/carer survey and interviews have been completed as part of Phase I and II.
This research received ethical approval from the Reference Research Ethics Committee Midlands Area and Corporate Division (HSE Dublin & Midlands) in 2025.
What will my child be asked about?
- Their experience of going through a really hard time (if they are ok to answer these questions, but they do not have to)
- Who and what helped them to feel better.
- How they think services and supports for children and families could be improved.
How will the consent process work?
- If your child is 15 or under we will seek your consent for them to participate and their agreement to participate. We will only proceed if they would like to take part (assent).
- If your child is 16 or over we will seek their consent to participate. We will provide them with understandable material on the study and they will have time to decide if they want to participate.
We will be available for any questions you or your child might have.
How will the interviews take place?
Interviews will be conducted in the most comfortable and suitable way for your child or young person. We will discuss with them and you if appropriate about their support and communication needs and preferences in advance. Interviews can take place in person, online, or if suits, they can submit written or audio responses to questions.
The interview will take around one hour to complete. They can take a break at any time or stop participating at any time.
If they tell us something that makes us worried about their safety or the safety of others, we may need to share this information. We will talk to them about this first. We will only share information with people that can help.
What are the benefits of taking part in this research?
There will be no immediate benefits to your child or you taking part in this research. However, their views and experience may help improve services for children and families into the future.
What are the risks of taking part in this research?
This interview is discussing a particularly challenging time in your child’s life, and likely yours too, and therefore taking part may become distressing. This is why we are requesting that anyone who is currently in a state of acute crisis or distress does not take part in the event it may cause more distress. We will give you a list of support services you can reach out to. If your child does become upset, they can take a break and decide whether or not to continue. They are free to stop the interview at any time.
The research protocols prioritise data security and privacy. A suite of security measures are in place to ensure that access to data is restricted and controlled. Data protection protocols will be adhered to at all times.
Is this research confidential?
All information provided by you and your child will be treated as confidential and will be stored securely on a computer system with restricted access and robust firewalls. Only the NDA team has access to the project files.
Signed consent and assent forms will be sought from people who participate in interviews. These will contain names and will be stored electronically for two years after the end of the research and then destroyed. Any paper consent forms will be scanned and stored electronically and the paper copy destroyed.
What do I do if I think my child or young person might be interested in participating?
Please contact the project manager Dr Carly Cheevers – research@nda.ie or 087 6712376 to discuss further.