FAQs for Families

SupporTing pARents and their autistic Children through Anxiety Treatment (STAR-CAT) is a research study funded by the National Institute for Health and Care Research (NIHR). It is led by a team at the University of Oxford, across the departments of Psychiatry, Experimental Psychology, and the Primary Health Care Clinical Trials Unit. You can meet some the STAR-CAT team here.

We are testing whether an online, parent-led intervention (called OSI-A) can make treatment for anxiety problems among autistic children more accessible without compromising children’s outcomes. Further information about OSI-A can be found in the section below. Families who take part in STAR-CAT will be randomly allocated to receive either OSI-A or treatment as usual – which is whatever treatment their services would typically offer autistic children to address anxiety problems. The STAR-CAT research team will follow up all families six months and twelve months after they have been allocated to their treatment, using online questionnaires. Some families will also be invited to take part in interviews so we can find out more about their experiences.

STAR-CAT is currently in the set up phase of the study. Recruitment is due to start in January / February 2025 (subject to ethical approval) and services will be able to continue recruiting families until March 2027.

STAR-CAT has been reviewed and approved by the Health Research Authority (HRA) and Research Ethics Committee (REC 24/LO/0875).

To participate in STAR-CAT, families need to be about to receive treatment for their child’s anxiety problems from a clinical service. If your clinical service is involved in STAR-CAT and your family are suitable for the study, your clinician will introduce the study to you. Unfortunately, we are unable to offer participation in STAR-CAT directly to families.

No, we understand that waiting lists for a diagnosis can be long, so this is not a requirement for participation. If your child does not have an autism diagnosis, but it is thought they would be likely to get one if they were  assessed, you will be asked to complete a screening questionnaire to check if they are eligible for the study.

First, you will be invited to complete consent forms and a screening questionnaire (if your child does not have an autism diagnosis). If eligible for the study, you (and your child, if they are happy to) will complete a series of questionnaires. After completion of the questionnaires, your family will be randomly allocated to one of two treatments: either OSI-A, or Treatment as Usual (please see the sections below for more details about the two treatment options). Your family will then receive the treatment. 6 months and 12 months after initially agreeing to take part in the study, you (and your child, if they are happy to) will be asked to complete further sets of questionnaires. We may also ask you and your child to be interviewed about your experiences, but this is optional.

For full details about taking part in STAR-CAT, please read the Parent Information Sheet. We also have a Child Information Sheet. You can find these documents here.

The questionnaires will ask for some basic information about your family, information about you and your child’s health and lifestyle, details about your child’s anxiety problems, and you will also be asked to come up with some ‘valued outcomes’. Valued outcomes are things that you would like to achieve for you and your child through receiving treatment for their anxiety problem.

All questionnaires for the study will be sent directly to you via email when they are due. All of our emails will start with ‘STAR-CAT’ so please search for this in your inbox.

This information is really helpful to inform decisions about what will be the best way to support families where autistic children have problems with anxiety beyond this research study.

Some parents and children will be invited to take part in an interview about how they have found the treatment. The interview will be conducted by a researcher at the University of Oxford and will take place via telephone or video call.

In addition, some children will be invited to share their experiences of treatment via creative methods, such as a ‘digital pinboard’, where they can add images and memes that relate to their experience.

Yes, you will receive a £10 voucher for completing each of the parent follow up questionnaires at the 6 month and 12 month timepoints.

For families taking part in the additional interviews, parents will get a £20 voucher and children will get a £20 voucher. Children who participate in the ‘digital pinboard’ will receive a further £10 voucher.

If families need help with childcare costs in order to complete the questionnaires, we will be able to offer an additional £10 voucher.

All information we collect about your family in STAR-CAT will be kept confidential. Only members of the research will have access to the personal information you give us. All study data will be label with a participant number, and is therefore pseudonymised – your family will not be identified by anyone outside the study team.

Please see pages 14-15 of the Parent Information Sheet for full details about how we keep your data secure. The Information Sheets can be found here.

Your participation in STAR-CAT will last around 12 months from the date your child is randomly allocated to their treatment.

OSI-A is an adapted version of an existing intervention, OSI (Online Support and Intervention for child anxiety). More information about the original, unadapted version of OSI can be found here.

OSI was adapted to OSI-A following an extensive co-design process with autistic children, autistic parents, non-autistic parents, academics and clinicians, in order to ensure it meets the needs of autistic children and their families. You can read more about the co-design process here. As a result of the co-design, changes have been made to the module content and the language used; new videos have been created; and two additional modules have been produced. More information about the changes made for OSI-A can be found here.

OSI-A consists of nine online modules which are designed to be completed weekly, although there is some flexibility. One month after the ninth module there is a follow up module.

After you have worked through each module, you will have a phone call or video call with your clinician. This call will last around half an hour.

If your family are allocated to OSI-A, we are able to assist with the cost of data (in the form of vouchers) to access the internet, and we can also loan devices to access OSI if required. Please contact the research team or your clinician if you could benefit from this help.

‘Treatment as Usual’ refers to whatever treatment your clinical service would typically offer to autistic children with anxiety problems.

Treatment as Usual can vary from service to service. Please get in touch with your clinician to ask what the usual treatment is.

You will not be able to access the OSI-A website, but at the end of the study we will send PDFs of the OSI-A module content to all families who received Treatment as Usual.