Frequently Asked Questions (FAQ's)
(Parents/Carers)
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) Is my child/young person eligible to take part if I as a parent/carer have received formal training in Intensive Interaction? A) 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 Intensive Interaction training within the last 12 months. 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.
Q) What happens if more parents/carers want to join than there are places? How does random selection work? A) Your child/young person’s educational setting has been asked to invite all parents/carers of eligible children with PMLD to participate in the study. 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 the 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, if you and your child/young person are not randomly selected to take part, your child/young person’s usual care or education will not be affected in any way. Once the setting has been trained in Intensive Interaction they are free to use this with any child/young person within the setting, even if they are not part of 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 parent/carer interventionist Google training site by the team at The University of Sheffield.
Q) What if I cannot access or finish the Intensive Interaction training? A) If your child/young person’s educational setting is randomly allocated to the Intervention group, it is your choice whether or not to complete the online Intensive Interaction training and to deliver this to your child/young person at home. For parents/carers who choose not to receive the training, their child/young person's participation in the study is not affected, the education setting will still deliver the intervention to the child/young person (between January-May). If you wish to complete the Intensive Interaction training and deliver the intervention at home, but you have difficulty accessing the training, please contact the Speech and Language Therapist (SaLT) assigned to you so that they can support you with this.
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 at the University of Sheffield will provide guidance on a timeframe for completing this.
Q) My child/young person’s setting is an intervention group setting but my child/young person has not been randomly selected to participate. Can I still have access to the Intensive Interaction training? A) In this situation, if you and your child/young person are not randomly selected to take part, your child/young person’s usual care or education will not be affected in any way. Once the setting has been trained in Intensive Interaction they are free to use this with any child/young person within the setting, even if they are not part of the study. At the end of your child/young person's educational setting’s involvement in the study, staff and parents/carers of participating children/young people will be given ongoing access to the Intensive Interaction Google training sites. If you wish so, we will also be able to share this with you at this point.
Q) My child’s setting is a control group setting. Will I also have an opportunity to be provided with Intensive Interaction training after the study period, or is this limited to only settings (within the control group)? A) Yes, parents/carers will be invited to access free online Intensive Interaction training after they complete their final 52 week follow up for the study. Parents/carers can also receive support from a Speech and Language Therapist (SaLT) to complete the online training.
Intervention delivery and supervision
Q) How long is the study period? A) Settings will be recruited in June-September 2025, and the follow-up period will end in November/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. If you wish to deliver intervention at home as well, you will be asked to do this at the same time as your child’s setting. Settings randomised to the control group will be invited to receive online training after the end of the final follow-up period (after December 2026 for parents/carers who joined the study in 2025).
Q) My child/young person’s school has been assigned to the intervention group — will this affect their usual therapies/change the way they access speech and language therapy? A) No, your child/young person’s usual therapies will not be affected or altered in any way by their participation in this trial. It may be that an external speech and language therapist has been recruited to support you as parent/carers and the educational staff with using Intensive Interaction; this is in addition to the usual speech and language therapy provided by your school/NHS therapist. If your child/young person’s usual speech and language therapist is supervising delivery of Intensive Interaction as part of the trial, additional funding has been provided so that this is in addition to the support they would usually get.
Q) What exactly will my child/young person be doing during the intervention/what does a session look like? A) Your child/young person will interact with you and with their educational setting interventionist (e.g., teacher, teaching assistant) within their normal routine. If you choose to complete the online training, you and the setting interventionist will each adapt your interaction with your 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 getting them dressed. 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 intervention period (January-May 2026).
Q) How much time will I need to spend doing Intensive Interaction with my 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 child/young person? / How will I know if the intervention is working for my 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 session record logs which you and your child/young person’s educational settling will complete will give you opportunities to track how your 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 session 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) Will I get feedback on my child/young person’s progress? A) You can track your child/young person’s progress using the session record log provided and discuss this with the speech and language therapist supporting you throughout your involvement in the study. Staff at your child/young person’s educational setting will also be completing a session record log to record Intensive Interaction sessions and will return this to the research team at the end of the intervention period. Your usual home-school communication will continue during your involvement in the study, where updates may be shared about your child/young person’s progress and learning.
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 parents/carers 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 parents/carers 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 my allocated Speech and Language Therapist (SaLT)? A) You can contact the study team who will help them with this. Please use the contact details below.
Intervention delivery and supervision
Q) What if our family is on holiday over the data collection period and cannot complete the questionnaires? A) Each data collection point (baseline, 32 weeks, and 52 weeks) has a window of approximately 7 weeks for parents and carers to complete the questionnaires (either online or over the phone/video call with a researcher). We hope this timeframe will allow parents/carers sufficient time to complete the questionnaires.
Q) When and how will I get the £15 voucher? / What kind of voucher? A) You will receive the £15.00 shopping voucher via email once you have completed the final questionnaire for the study during the 52 week follow up.
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) I am not able to do the intervention at home / I am not able to continue delivering the intervention at home anymore: will this affect my child/young person’s access to the intervention in school? A) You can choose for your child/young person to only have intervention at school. Your child/young person’s access to the intervention in school will not be affected if they stop accessing the intervention at home.
Q) Can I withdraw my child/young person from the study? How do I do that? A) Yes, you can withdraw your child/young person from parts or all of the study at any time. To do this please 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 the lead contact within your school) rather than their name when reporting via email). You will be given a chance to explain why you have chosen not to continue but you do not need to provide one if you do not want to. The data collected on your child/young person up until the date of withdrawal will be kept unless you specifically ask for this to be removed.
Q) If I withdraw, will this affect my child/young person’s care/speech and language therapy outside the trial? A) No, your child/young person’s care and speech and language therapy provision will not be affected by taking part in the study and then withdrawing. Please speak to your setting and/or your speech and language therapist if you have concerns that this has happened.
Q) Can my child/young person’s setting interventionist withdraw from the trial? What will happen if they withdraw? A) Sometimes due to staff absences and changes, the setting interventionist for a child/young person becomes unavailable. Where possible, a new interventionist will be trained and assigned to your child/young person or another already trained interventionist may start working with your child/young person. Intervention delivery at home can continue regardless of the situation with intervention delivery at the educational setting.You can also choose to continue providing follow up data even if both you and setting are not delivering the intervention.
Queries, Privacy, and Contact information
Q) English is not my first language. Is there translation assistance available? A) As part of the study, we ask you to complete a consent/consultee form and three questionnaires during your child/young person’s time in the study. We can offer a translation service to complete the 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 you choose to complete them online.
Q) What will happen to my child/young person’s video recordings? How long will you keep them? A) Settings 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 will know about my or my child/young person’s involvement in the research? A) The research team (at the University of York and the University of Sheffield) and staff at your child/young person’s educational setting will know about your child/young person’s involvement in the research. Relevant educational setting and parent/carer/study partner contact details (name, email, phone number) will be shared between the trial team at University of York and the trial team at University of Sheffield via the University of Sheffield’s secure cloud-based platform (Google Drive) for storage of research data.Speech and Language Therapists (setting-based or external, as applicable for each setting) have access to setting information and contact details on University of Sheffield’s secure cloud-based platform (Google Drive) for storage of research data. This will be revoked at the end of the Speech and Language Therapist’s involvement with intervention delivery for the trial.
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. We will not share anything you have told us with anyone else, without your permission. However, there may be very rare circumstances where confidentiality may need to be breached. Such a breach would only occur in the most extreme cases, if, for example, information disclosed related to criminal activity or implied that an individual has been, or is, at risk of harm. 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. The University of York will securely share your contact details with the research team at University of Sheffield (who may potentially share these details with an external Speech and Language Therapist allocated to your child/young person’s education setting for the study) to enable them to support you to complete Intensive Interaction training and use this with your child/young person, if you choose to do this. We will use REDCap and Qualtrics survey software to collect information for the study. 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. 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. For further information about how we will use the information collected for the study, see: 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 you and your child/young person are will not be able to access names or contact details. Your data will have a code number instead. You have rights in relation to your data (see: 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 (expected to end 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 or my child/young person’s name appear in any publication or information shared publicly? A) You and your child/young person and their educational setting will not be identifiable in any published report or output arising from the research.
Q) Can I ask for my child/young person’s information or data to be deleted after I agreed to participate? A) Yes, you can request for your child/young person’s data to be removed. Participation in the study is entirely voluntary and it is up to you whether you would like you and your child/young person 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/young person’s care or education in any way. 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/young person’s setting. If you decide to withdraw at any stage, we will use the information collected so far about you and your child/young person, unless you ask us to remove your data.
Q) If needed, is there anyone I can talk to who is not my supervising SaLT or the person delivering the training 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 at the University of York (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).