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For Parents/Carers

Please see the animation video below which explains what is involved for parents/carers whose child/young person takes part in the INTERACT study. 

 

 

 

 

 

 

 

 

 

 

 

 

 

 

 

 

 

Please see the bottom of this page to view the Parent/Carer Information Sheet (2024-2025) or listen to an audio version of this - or click HERE to skip to these.

We are aiming to recruit 330 children and young people and their families to take part in the INTERACT study. The study is looking at an intervention to support communication skills in children and young people with profound and multiple learning disabilities (PMLD).

Only children and young people whose educational setting is part of the study can take part. If you have received an information pack from your child’s educational setting directing you to this website, this means that they have agreed to take part. If you have learnt about this study from elsewhere, please ensure your child’s setting has agreed to take part before proceeding. If you are unsure, you can contact us at ytu-interact@york.ac.uk.

What is the purpose of the study and why is it important?

We know that children and young people with PMLD often struggle to communicate with those that care for them such as their parents, carers and teachers. These difficulties mean that they are sometimes unable to communicate their needs, what they like and don’t like, and are unable to take part in social activities such as turn taking.
Intensive Interaction is a development-based intervention designed to teach the fundamentals of communication. During an Intensive Interaction session, the practitioner works with the child/young person, responding to what they do by copying and joining in.  Although there is some research to suggest that Intensive Interaction can be beneficial to individuals with PMLD, further research is needed to understand how educational settings can use Intensive Interaction to support children and young people with PMLD.  

Will my child receive the Intensive Interaction intervention?

To find out how well Intensive Interaction works, half of the educational settings taking part in this study will receive training and ongoing support to use Intensive Interaction and the other half will be offered the training at the end of the study. This is decided randomly using a computer. If your child’s setting is chosen at random to use Intensive Interaction and, if you agree to take part, your child will receive the Intensive Interaction intervention (more information below). Your child will continue to receive all other treatment or support as usual regardless of the group their setting is allocated to.   

What will taking part involve for my child?

  • We will ask your child’s educational setting to provide us with some information about your child. 
    • This includes: the names of staff who currently support them in their learning and confirmation of their PMLD diagnosis.
  • Your child’s setting will provide us with a 10 minute video recording of your child and their main teacher taking part in a communication activity at three timepoints. The interaction will be naturalistic showing the teacher and child/young person interacting as they typically would.
  • We will ask your child’s main teacher to complete a questionnaire about your child during three timepoints.
    • This is to provide ratings of your child’s cognitive development, communication and social interaction, environmental interaction, quality of life, and behaviour, and to report whether changes have been made to your child's education, health and care plan. We will also ask about how your child receives nutrition, support and intervention your child receives, any sight or hearing impairments, and other conditions they may have, such as epilepsy and autism.
  • If your child’s educational setting is chosen at random to use Intensive Interaction, a trained member of staff (e.g. teacher, TA, SENCO) will deliver the intervention to your child for a minimum of 18 weeks. 
    • Intensive Interaction will be embedded into daily activities and each session will likely to be around 5-15 minutes, depending on your child’s needs. 
    • We will ask settings to complete a diary/session record log to record the number and duration of sessions delivered, the techniques used and how your child responded.

What will taking part involve for me?

  • We will ask you to complete questionnaires. You will be able to choose whether you complete these online (on your computer or smart phone) or via a phone or video call with a research assistant.

  • The questionnaires collect information about:

    • Your child’s date of birth, gender, ethnicity, living arrangements.

    • Your gender, ethnicity, relationship status.

    • Ratings of your child’s quality of life, mood, interest and pleasure.

    • Your well-being and care-related quality of life.

    • Resource-use for your child (e.g. healthcare, social care, educational services, medication use, and days missed from employment/education/training to care for your child).

  • If your child’s educational setting is chosen at random to use Intensive Interaction, you will be invited to complete online training to learn how to use Intensive Interaction at home.

    • You will be given access to a training website and asked to complete 4 units about Intensive Interaction, which will take approximately 4 hours.

    • If you struggle to access the training website, where possible a Speech and Language Therapist will go through the training units with you either via a video call or in person, depending on the geographical location and the capacity of the Speech and Language Therapist.

    • A Speech and Language Therapist (who is also supporting your child’s setting) will provide support weekly for the first 4 weeks and then monthly. This ongoing support will be via video call, phone or email according to need and is designed to build confidence and skill in using Intensive Interaction.

    • You will be asked to embed Intensive Interaction into your daily activities at home (for 18 weeks) with each session lasting around 5-15 minutes, depending on your child’s needs.

    • We will provide you with a session record log to complete to log your Intensive Interaction sessions.

  • You may be asked to take part in an interview about your experiences of taking part in the study and using Intensive Interaction. You don’t have to agree to be contacted about participating in an interview if you do not want to. This will not affect your or your child’s participation in the study. If you are interested in taking part in an interview, you will receive a separate information sheet and consent form for this.

  • We will also ask whether the research team can contact you in the future to follow-up this research or to let you know about any other new research studies. Agreeing to this is completely optional. If you agree to this, your contact information will be kept on a secure database when the study has finished.

What are the possible benefits of taking part?

Intensive Interaction may help your child with their communication skills. This study will provide important information about the effectiveness of Intensive Interaction for children and young people with PMLD. As a thank you for taking part, you will receive a £15 voucher after completing the final questionnaire for the study.

What are the possible disadvantages and risks of taking part?

Some parents/carers may find talking about their child’s PMLD distressing. Some children may not want to engage with the intervention. If at any time a child appears distressed, the session would be stopped. If a child shows continued signs of distress, they would be withdrawn from the study. You can discuss any issues or concerns with the research team at any time.

Who is organising and funding the research?

The research is being carried out by researchers at University of Kent, University of York, University of Sheffield, Newcastle University, and Bangor University, as well as by collaborators from PAMIS and the Council for Disabled Children. It is being funded by the National Institute for Health and Care Research (NIHR) Health Technology Assessment (HTA) programme (HTA Project: NIHR151428). The University of Kent is the sponsor for this study.

Do we have to take part and what happens if I change my mind?

No, participation is entirely voluntary and it is up to you whether you would like you and your child to participate. If you do agree to participate, you are free to withdraw from the study at any time, without explanation. If you decide not to take part or to withdraw from the study, this will not impact your child’s care or education in any way. 


If you withdraw your child from receiving the intervention, we would still like to know how your child is progressing. We will still ask you and your child’s setting to complete questionnaires about your child if you are happy with this. If you withdraw from completing questionnaires, your child’s setting will continue to complete questionnaires about your child, and continue to deliver the intervention to them (if allocated to do so), if you are happy with this.


If you fully withdraw your child from the study, we will not collect any further information about your child and any intervention delivery to your child as part of the study will stop. 
 

If you would like to withdraw from any part of this study, please contact the research team (using the details at the end of this information sheet) or your child’s setting. If you decide to withdraw at any stage, we will use the information collected so far about you and your child, unless you ask us to remove your data. 

What if I have a problem concerning my child?

 If you have a concern about a participating child or young person, or they experience an incident, event, negative change (e.g. to their communication or behaviour), or out of character distress that may be related to taking part in the INTERACT trial, please report this to the INTERACT team at the University of York by telephone (01904 325157) as soon as possible. We aim to respond promptly during working hours (9 am to 5 pm, Monday to Friday).

If you would like to speak to us about the study, please contact us at:

 ytu-interact@york.ac.uk and a member of the trial team will get back to you.

Then check out our FORUM where you can interact with other Parent/Carers taking part in the study

Documentation for Parents/Carers

Versions for 2024-2025 will be available shortly

Parent/Carer Information Sheets

Parent/Carer Information Sheet (2023-2024)

Version: 1.0

Date: 05.04.2023

Click here for Parent/Carer Information Sheet 

Parent/Carer Information Sheets AUDIO VERISON

Parent/Carer Information Sheet (2023-2024)- AUDIO VERSION

Version: 1.0

Date: 05.04.2023

Click below for Parent/Carer Information Sheet AUDIO VERSION

INTERACT Parent Carer PIS audio file
00:00 / 17:32
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