Research Information for

Parents or Carers of

young people with intellectual disability

Navigating the transition from school: Experiences of young people with intellectual disability

Short title: Leaving school: Transitions for young people with intellectual disability

Project Summary:

You are invited to participate in a research study on the experiences of young people with intellectual disability transitioning from school to adult services, training and/or employment. The study aims to establish the barriers and enablers to successful transition experiences.

The project is led by Dr Lise Mogensen from the Western Sydney University School of Medicine with a team of researchers experienced in working personally and professionally with children and young people with disability. The study is funded by the Endeavour Foundation Disability Research Fund.

The findings will contribute to developing a framework for transition from school with practical resources that will help guide young people, families, educators and disability services through the planning and transition period for people with intellectual disability.

What will I be asked to do?

In this study the researchers will be contacting young people with intellectual disability and their parents/carers to find out about their understandings and experiences of navigating transition from school to post-school life.

If your son/daughter is leaving school soon

You will be asked to participate in a semi-structured interview at the time, or close to, the young person’s transition, and you may also be asked for one semi-structured interview 6 to 12 months after they have left school. Questions will be about your experiences around the transition time, and the support and services available to your son or daughter.

We will ask your permission to record the conversation for analysis purposes. If possible, we might ask to include your son/daughter in the interview.

If your son/daughter has left school in the last 5 years

You can participate in an online survey - see link below, or you can participate in one semi-structured interview. Questions will be about the experiences of the transition and post-transition period, and the support and services available to your son or daughter.

There is also a survey for young people, who can complete it with or without help. See link below.

How much of my time will I need to give?

The survey will take around 15 minutes to complete.

Interviews will take around one-hour at a location convenient to you.

If you agree to participate in an interview, you may be asked to sign the Participant Consent Form.

What benefits will I, and/or the broader community, receive for participating?

A small gift card will be offered to participants in appreciation of time and contribution. The information you provide will contribute to developing practical resources that will help guide young people, families, educators, and service providers through the planning and transition period for people with intellectual disability.

We will give you a Giftcard for your time.

Will the study involve any risk or discomfort for me? If so, what will be done to rectify it?

There are no anticipated risks associated with participating in the survey. However, if during the interview you feel upset about yours or other people’s circumstances, you may wish to pause or stop the interview. We can talk about your concerns, and provide you with information about available support services.

How do you intend to publish or disseminate the results?

The research team will write a report to the Endeavour Foundation that will document the key findings. The research findings may also be published in peer-reviewed journal articles, conference papers and the media.

A Youth Advisory Group will help develop findings suitable for young people with intellectual disability. No identifying participant information will appear on any reported findings or results.

Will the data and information that I have provided be disposed of?

The digital recordings will be destroyed upon transcription. The survey data, de-identified transcripts, and any copies of drawings or photographs provided to the researchers for analysis will be held on a secure computer drive at Western Sydney University where they will only be accessible to the research team. However, your de-identified data may be used in other related projects for an extended period of time.

Can I withdraw from the study?

Participation is entirely voluntary and you are not obliged to be involved. If you do participate you can withdraw at any time without giving reason. If you do choose to withdraw from an interview, you may choose what information the researchers can keep (the rest will be destroyed). Surveys are anonymous so it is not possible to withdraw information.

Can I tell other people about the study?

Yes, you can tell other people about the study by providing them with the Chief Investigator’s contact details as provided below. They can contact the Chief Investigator to discuss their participation in the research project and obtain a copy of the information sheet.

What if I require further information?

Please contact Dr Lise Mogensen should you wish to discuss the research further before deciding whether or not to participate.

Phone: 02 4620 3041


This study has been approved by the Western Sydney University Human Research Ethics Committee.

The Approval number is H12807

What if I have a complaint?

If you have any complaints or reservations about the ethical conduct of this research, you may contact the Ethics Committee through Research Engagement, Development and Innovation (REDI) on Tel +61 2 4736 0229 or email Any issues you raise will be treated in confidence and investigated fully, and you will be informed of the outcome.