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A qualitative study to develop global impression items and a goal attainment scaling approach as outcome measures in paediatric autism

November 7, 2022 - May 26, 2023

What are the goals of the study?

We are carrying out an interview research study in the US and Canada which will involve interviews with autistic adolescents and supporters of autistic children and adolescents.
The aim of the study is to understand everyday life with autism and to understand the most important characteristics and impacts of autism that should be measured in future clinical studies. We will use this information to develop a new questionnaire and a personalised goal setting approach in order to measure what matters to autistic people.

What will happen during the visit or online?

● Speak to a researcher during two one-to-one interviews, which should last around 60-75 minutes each
● Talk about the experience/their child’s experience of living with autism
● Give honest feedback about some questionnaires
● In appreciation of your time, you will be reimbursed after each interview (two interviews in total).

How will this help families?

There is no direct medical benefit from being in this study. The information learnt from this study may help researchers and doctors learn more about autism in general. Your child and others with autism may benefit from the results of such research in the future, as we seek to develop a new questionnaire and a personalised goal setting approach in order to measure what matters to autistic people.

Eligibility Criteria

Group 1:
● Supporters who live with and care for a child or adolescent with autism aged 5-17 years old
● Are able to participate in two 75-minute interviews

Group 2:

● Autistic adolescents who are aged 12-17 years old
● Are able to participate in two 1-hour interviews
● Have a supporter (e.g., primary caregiver) who is able to be present during the entirety of the interview

For both groups a supporter will need to provide documentation of their child’s autism diagnosis. Additional inclusion criteria will be checked during a screening call.

View the study flyer here.

Contact Information

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