Frequently Asked Questions
(FAQ's)
(Educational Settings)
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Recruitment and participation
Q) What do you mean by Profound and Multiple learning disabilities (PMLD)? A) Profound and Multiple learning disabilities (PMLD) is not a clinical diagnosis, but rather a descriptive term. Please visit our webpage (www.interacttrial.com/definingpmld) to learn more about how PMLD is defined in the INTERACT study. Children/young people are not eligible to take part in the INTERACT study if they have a degenerative condition or dementia. Examples of degenerative conditions are provided here: https://drive.google.com/file/d/1AxwWcKAZrKRxr99X6fUR7RkHfDSj2fWZ/view
Q) We use Intensive Interaction frequently with our pupils, but have not been formally trained, can we still take part? A) We understand that some educational settings may already use aspects of Intensive Interaction regularly with their pupils. As long as no staff at the educational setting have completed formal Intensive Interaction training in the past 12 months, the setting is eligible to apply for the study. By ‘formal training in Intensive Interaction’ we mean if you have received training on the 4 modules of learning outlined by the Intensive Interaction Institute, and/or if the professional who delivered the training was part of or accredited by the Intensive Interaction Institute. If you're unsure what qualifies as formal training, you're welcome to get in touch with the study team at the University of York (see contact details below) for clarification.
Q) We have identified a child/young person who meets the recruitment criteria but their parent has been formally trained in Intensive Interaction; are they still eligible to participate? A) Yes, eligible children/young people can still take part in the study if their parents/carers have received formal training in Intensive Interaction. We are only unable to include educational settings whose staff have received formal training within the last 12 months.
Q) What if our Educational Setting doesn’t have an SaLT? A) We understand that the SaLT(s) supporting your educational setting might be employed by either your setting, the NHS, the local authority or privately. For settings who do not have a SaLT with capacity to train and support interventionists (e.g teachers, TAs, or SENCOs), as well as parents/carers (who will receive the Intensive Interaction training and implement the intervention at home if they choose to do this), where possible the research team will recruit an external SaLT to support your setting. It would be really useful if the study team is aware as early as possible if your setting will require external SaLT support, this can be specified when completing the Memorandum of Understanding (MOU).
Q) What is the maximum number of children who can take part per setting? A) We would like you to approach all the parents of eligible children at your setting and we ask that each educational setting recruits at least 5 children/young people with PMLD. Some settings have recruited more than 5 children previously; however, it is important for each educational setting to be mindful of the capacity of both teachers and interventionists. Educational settings will be asked to complete a questionnaire for each participating child (which takes approximately 45 mins to complete) and record a 10 minute video of each child and their teacher, 3 times during the study).In addition, if the educational setting is randomly allocated to the control group, the setting interventionists will need to be given time to complete the 4 hour online Intensive Interaction training.Where settings recruit more families than they are able to support, York Trials Unit will randomly select 5 children/young people with profound and multiple learning disabilities (PMLD) to participate.
Q) What should we do if we think some parents/carers might not want to take part in the study? A) We would suggest approaching all parents of eligible children/young people at your educational setting. The information sheet parents/carers receive will clearly outline what participation in the study involves, allowing them to decide whether or not they wish to take part. We would like to highlight that the study has been carefully designed to reduce the burden on parents and carers as much as possible. For those whose children/young people are in settings that are randomly allocated to the intervention group, participation in the home-based Intensive Interaction training and delivery is entirely optional. If they do not have the capacity to take part in this aspect of the study, they can still contribute by completing three questionnaires over the course of the study (during September/October, June/July, and November/December). It would be greatly appreciated if settings could support and encourage parents and carers to read the study information so they can make an informed choice.
Q) What happens if more parents/carers want to join than there are places? How does random selection work? A) We ask that each educational setting recruits at least five children with PMLD and their parents/carers. If more parents/carers are interested in taking part than your educational setting has capacity to support, the research team will randomly select who will take part. This is decided randomly using a computer. In this situation, when a child is not randomly selected to take part, their usual care and education should remain the same. Once your educational setting has been trained in Intensive Interaction you are free to use this with any child within the setting, even if they are not part of the study.
Q) Do all staff at our setting need to have capacity to take part as interventionists? A) No. Each participating child/young person only requires a member of staff to be trained as the interventionist and a class teacher to complete questionnaires at three time points during the study. Previously, other educational settings have trained a variety of roles and quantity of staff members to take on the role as interventionist. Having more staff members trained allows for multiple people to deliver Intensive Interaction sessions to the child/young person. We understand that the capacity of some staff members taking on the role of interventionists may vary, and the capacity of potential staff taking part should be reviewed before signing up to take part in the study.
Training in Intensive Interaction
Q) Is the training I will be accessing free? A) Yes, the training is free. You will be given access to the educational interventionist Google training site by the team at The University of Sheffield.
Q) What if I cannot access or finish the training? A) Please contact the Speech and Language Therapist (SaLT) assigned to you if you have difficulty accessing the training so that they can support you with this u. If you still do not have capacity to complete the training, please speak to the lead contact for the study at your setting as another interventionist may be assigned to the child/young person.
Q) Do I have to complete the 4 hour training in one session? A) The training is hosted on a Google site and can be completed at your convenience and can be completed over multiple sessions if necessary. The intervention training and delivery team will provide guidance on a timeframe for completing this.
Q) Can I access the training if my setting is randomly selected to be a ‘control’ setting? A) Yes; however, this will not be immediately. You will be able to access the training after the 52 week follow up is complete (e.g. after December 2026 for educational settings who joined the study in 2025) Your educational setting will be informed by the research team at the University of Sheffield when you can be granted access to the training sites.
Intervention delivery and supervision
Q) How long is the study period? A) Settings taking part in the final phase of the study (in 2025-2026), will be recruited in June/July 2025, and the follow-up period will end in December 2026. Settings which are allocated to receive the Intensive Interaction training and to deliver the intervention with the participating children/young people in their setting will be asked to do this between January and May 2026. Settings randomised to the control group will be invited to receive online training at the end of the final 52 week follow-up period (after December 2026)
Q) Do staff have to stop other forms of communication interventions/activities during the research period? A) No, settings taking part in the INTERACT study are able to continue care as usual during the research period. Children/young people should continue to receive all other treatment or support as usual regardless of the group their educational setting is allocated to (either intervention or control). If your educational setting is randomly allocated to the control group, we will ask that you do not complete any formal training in Intensive Interaction until the end of your involvement in the study.
Q) What exactly will the child/young person be doing during the intervention/what does a session look like? A) The child/young person assigned to you will interact with you while at school and with their parent/carer within their normal routine. You and the parent/carer interventionist will each adapt your interaction with the child/young person to include the Intensive Interaction techniques. These will be explained and demonstrated to you in videos on the Intensive Interaction training site. The techniques include sharing personal space, making/exchanging eye contact/looking, exchanging facial expressions, copying behaviour and sounds, turn taking, physical contact, joint focus, interaction-pause intervals, and running commentary (talking about what’s happening). Within each interaction, you will use some or all of the techniques and keep a record of which ones you have used. The interactions will be during the child/young person’s usual activities, at any time and anywhere, and should not involve any change to their routine. For example, you might repeat sounds or body movements that your child/young person uses whilst walking them to class. A session may only last a minute or it may last 30 minutes depending on the activity that it is embedded into. No specific number of sessions is required; however, we ask that at least one session a day takes place over the 1 intervention period (January-May 2026).
Q) How much time will I need to spend doing Intensive Interaction with the child/young person each week? A) There is no set time given as we do not want to limit potential opportunities for meaningful interactions to take place. However, we recommend sessions occur regularly and at least once per day.
Q) What can I expect in terms of benefits or progress for my assigned child/young person? / How will I know if the intervention is working for my assigned child/young person? A) Intensive Interaction works on early interaction abilities (how to enjoy being with other people), which are at the base of developing successful communication. The aim is to relate, interact, know, understand and practise communication routines (Intensive Interaction Institute). The record logs which you and the parent/carer will complete will give you opportunities to track how the child/young person responds to each session. For example, whether they show ‘awareness’ of your presence by briefly stopping what they are doing or whether they have moved onto ‘engagement’, such as sustained looking at what you are doing or repeatedly following an event with a movement. The responses may vary and may be more or less noticeable depending on the activity and the day so do not be disheartened if the child/young person responds more one day than the next, but record all that you observe on the record log - no reaction is too small.
Q) How much time will it take me to fill in the session/intervention log every week? A) The session logs have been designed so that you can just write the number of sessions, timing of sessions and then tick the techniques used and responses made. Please do this as you go along. The log should therefore not take more than a few minutes to complete each week. However, this may take longer at the start as you get familiar with the terminology.
Q) As an interventionist, do I have to share my intervention logs with the child/young person’s parents/carers? Do we as an interventionist setting have to share the measures we fill with the child/young person’s parents/carers? A) You can continue to share progress/feedback on the child/ young person with their parents/carers as per the school usual procedure (e.g., home-school communication system). However, your session record logs and teacher questionnaire responses will only be shared with and analysed by the research team at the University of York. A) The session logs have been designed so that you can just write the number of sessions, timing of sessions and then tick the techniques used and responses made. Please do this as you go along. The log should therefore not take more than a few minutes to complete each week. However, this may take longer at the start as you get familiar with the terminology.
Q) Do I have to / How many times and for how long do I have to meet with the SLT? A) Yes, we ask that educational setting interventionists meet with their assigned speech and language therapist to support them throughout completing the online training and intervention delivery. This is to ensure that the training and intervention is carried out similarly by everyone and that interventionists can ask any questions they have. Meetings can happen remotely or in person (where an SLT is based at an educational setting) at a time that is convenient for you. Please aim for a minimum of 1 supervision session every week (of about 30 minutes to 1 hour) for the first 4 weeks and then 1 supervision a month for the rest of the trial (18 weeks in total). The speech and language therapist will contact you to arrange the supervision sessions at the start of the trial. However, please get in touch with the research team at the University of Sheffield (see contact details in emails from Judy Clegg) or York (see contact details on our website) if you have not had this contact.
Q) What if I cannot get in touch with the Speech and Language Therapist (SaLT) allocated to our setting? A) You can contact the study team who will help them with this. Please use the contact details below.
Q) Do external assessors come in pre/during/post interventions to evaluate the Intensive Interaction sessions we deliver? A) No. External assessors do not visit settings as part of this trial. If your setting is allocated to the intervention group, the school staff who complete the online Intensive Interaction training and deliver the intervention (known as 'interventionists') within your setting will be supported by a Speech and Language Therapist (SaLT). If your setting does not have a SLT who is able to fulfil this role, the research team will recruit an external SaLT to support your setting, where possible. The support will be offered via online meetings and email.
Data collection and follow-up
Q) Can the SLT complete the ‘teacher’ questionnaires? A) We ask that the person at your educational setting completing the ‘teacher’ questionnaires is the child's main teacher or the teacher that knows them the best.
Q) Does it have to be the same teacher that completes the follow-ups for the child? A) Ideally, we would like the same nominated teacher to complete questionnaires for the same child/young person across all three follow-up time points. We do understand, however, that this may not be possible in some cases.
Q) When will I know the results of the trial? A) We will share the results of the research once we have completed all phases of the trial in Summer 2027. Parents/carers will be informed of the results via email and we will also let you know of any opportunities to attend events where the research team will be presenting the results.
Q) Can I continue delivering Intensive Interaction at the end of the intervention period? A) Yes, you can continue delivering Intensive Interaction going forward if you wish. You can download additional session record log pages from the Google training site to record your sessions but we will not be collecting this information as part of the study.
Withdrawal and changes in participation
Q) What happens if a parent/carer decides for their child to only receive intervention at home? A) Parents/carers can choose to withdraw their child from receiving the intervention at school, but continue delivering at home. If they wish to do this, parents/carers need to inform their SaLT and/or the research team. If the parent/carer agrees, follow up data collection can continue at the educational setting.
Q) What happens if a parent/carer stops using Intensive Interaction at home during the intervention period? A) Parents/carers can choose to stop delivering the intervention at home at any time. It will be explained to the parent/carer that intervention delivery will continue at the educational setting unless they ask for their child/young person to be withdrawn from that element of the study too. Follow up data collection will also continue from the parent/carer and educational setting unless the parent/carer informs the research team that they do not want that to happen.
Q) What if a parent/carer communicates to us that they want to withdraw their child/young person? Who do we tell/redirect them to? A) Please contact or redirect them to contact the INTERACT Trial Team at: email: ytu-interact@york.ac.uk Tel: 01904 325157. Please use the child/young person’s participant ID (available from a participant list which will be provided) rather than their name when reporting via email).
Q) Can I as an interventionist withdraw from the trial? What will happen with the child/young person who was assigned to me for intervention if I withdraw? A) You can withdraw from the trial at any time and where possible, a new interventionist will be trained and assigned to support the child throughout the study. Intervention delivery can continue at home.
Queries, Privacy, and Contact information
Q) Is there translation assistance that the study can provide to parents/carers whose first language is not English? A) As part of the study, we ask parents/carers to complete a consent/consultee form and three questionnaires during their time in the study. We can offer a translation service to complete these questionnaires over the phone with a researcher. However, unfortunately the online Intensive Interaction training is only available in English and we are not able to translate the questionnaires if parents/carers choose to complete them online.
Q) What will happen to the videos of me interacting with the child/young person? How long will you keep them? A) Your setting will transfer video recordings, identified by participant ID, to the University of Kent for scoring via Microsoft OneDrive/SharePoint. All individually identifiable data will be destroyed 10 years after the end of the study (expected to end June 2027).
Q) Who has access to my personal details? A) All information collected during the study will be treated with the strictest confidence and will be processed and stored in compliance with the UK General Data Protection Regulation (GDPR) and Data Protection Act 2018. The only time we would break this confidentiality is if we have safeguarding concerns, in which case we will notify the setting leader and parents/carers as necessary. For the purposes of this study, the University of Kent and the University of York are joint data controllers, as defined in the UK GDPR. This means that they are jointly responsible for looking after the information collected for the study, using it properly and ensuring this research study is compliant with GDPR. Personal data will be processed under Article 6 (1) (e) (Processing necessary for the performance of a task carried out in the public interest) and Special Category data under Article 9 (2) (j) (Processing necessary for ... scientific ... research purposes) of the UK GDPR (2018). This is our legal basis for processing the data collected for the study. We will use REDCap and Qualtrics survey software to collect information for the study. The University of York will securely share relevant setting contact details with the research team at University of Sheffield (to enable them to provide setting staff with access to Intensive Interaction training and support) and University of Kent (so they can contact settings regarding sharing video recordings). Data will be securely stored by the University of York, University of Kent, and University of Sheffield. Video recordings, provided by settings, will be stored securely by the University of Kent. A Data Sharing Agreement will be put in place between your setting and the University of York which will provide further details on data storage and sharing. A Data Sharing Agreement will also be in place between the collaborating universities. The University of Kent, University of York and University of Sheffield take information security seriously and have used appropriate technical and organisational measures to protect data. Access to information is restricted on a need-to-know basis and security arrangements are regularly reviewed to ensure their continued suitability. Further information about how we will use the information collected for the study can be found at: york.ac.uk/healthsciences/research/trials/trials-gdpr/and media.www.kent.ac.uk/se/40432/ResearchParticipantUniversityLevelPrivacyNotice.pdf Information collected may be looked at by other people involved in the running and supervision of the study to check that it is being carried out correctly. People who do not need to know who participating settings, setting staff, children and young people and their parents/carers are, will not be able to access names or contact details. Data will have a code number instead. We will use the minimum personally-identifiable information possible when storing data. Individuals participating in this study have rights in relation to their data - further information can be found here: https://www.york.ac.uk/records-management/dp/individualsrights/ . We will analyse the data collected in order to answer the research questions in this study. All individually identifiable data will be destroyed 10 years after the end of the study (which is expected to end in June 2027). Anonymous data may be kept indefinitely by the research team and potentially shared with other researchers or archiving organisations (such as the UK Data Archive) for research purposes only. If you have any further questions about the information above, please contact the INTERACT team.
Q) Will my name appear in any publication or information shared publicly? A) No, you, the child/young person you are supporting, and your educational setting will not be identifiable in any published report or output arising from the research.
Q) If needed, is there anyone I can talk to who is not my supervising SLT or the person delivering the sessions (e.g., if I have a problem/complaint/worry)? A) If you have a concern or question about any aspect of this study, you can speak to the research team (Email: ytu-interact@york.ac.uk, Tel: 01904 3251) who will do their best to answer your questions. If you would like to speak to an independent contact, who is not directly involved in the research, you can contact Professor Jenny Thomson, Speech and Language Therapist, University of Sheffield (j.m.thomson@sheffield.ac.uk). You can also contact the University of York’s Data Protection Officer at dataprotection@york.ac.uk or the University of Kent’s Data Protection Officer at dataprotection@kent.ac.uk. If you are unhappy with how we have handled your personal data, please contact the Data Protection Officers using the details above, so that we can try to put things right. If you are unhappy with our response, you have a right to complain to the Information Commissioner’s Office (https://ico.org.uk/make-a-complaint/ or phone 0303 123 1113).