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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 (2023-2024) 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 individuals with PMLD 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 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 imitating 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 not. 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. Your child will continue to receive all other treatment or support as usual regardless of whether their setting is chosen to use Intensive Interaction.   

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 any interventional support they receive in their educational setting

  • You child’s setting will capture a short video recording of your child completing an assessment of communication opportunities (which involves a naturalistic session of the teacher interacting with the child) with their main teacher and will share this with us.

  • We will ask your child’s main teacher to complete a questionnaire about your child.

    • This is to provide ratings of your child’s cognitive development, communication and social interaction, environmental interaction, and behaviour, and to report whether changes have been made to your child's education plan.

  • 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 to record the number and duration of sessions delivered.

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:

​o    Your child’s age, gender, ethnicity, home life, health
o    Your age, gender, relationship status, education, employment and history of receiving parental support related to your child’s diagnosis
o    Ratings of your child’s quality of life, mood, interest and pleasure
o    Your well-being, sense of competence, care-related quality of life
o    Resource-use for your child (e.g. healthcare, social care organisations and educational services, and medication use).

 

  • If your child’s educational setting is chosen at random to use Intensive Interaction, you will be invited to attend 2 half-day training sessions to learn how to use Intensive Interaction at home.

    • The training will cover the basics of Intensive Interaction and will be delivered by a Speech and Language Therapist who is supporting your child’s educational setting.

    • The training will be delivered flexibly and may be online, face to face, or hybrid.

    • The Speech and Language Therapist will provide support weekly for the first 4 weeks and then monthly thereafter. This ongoing support will be delivered flexibly, online, face to face, or hybrid, according to need and is designed to build confidence and skill in using Intensive Interaction. 

    • We will ask you 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 diary to complete to log how often you use Intensive Interaction at home with your child.

  • 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 please contact 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. 

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

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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