Take Part in the BISCUIT study

We are inviting you to take part in the BISCUIT study through Royal London Hospital. The study involves children and adolescents who have recently experienced a traumatic brain injury (TBI), as well as a comparison group of young people who were hospitalised for an orthopaedic injury not involving the head. Your participation will help researchers better understand the effects of different types of injury on sleep.

  • 1. Receiving Study Information

    You will receive information about the study through your clinical team, including details about what participation involves and what to expect, helping you make an informed decision before taking part.

  • 2. Booking a Visit

    The research team will contact you to see if you are interested in taking part and discuss any questions you may have. If you agree to take part, we will book a suitable date and time for your on-site research session. Clear instructions and travel details will be provided in advance. You will be reimbursed for your travelling.

  • 3. Attending the Research Session

    Attend the in-person research session with your child. The day includes age-appropriate activities and questionnaires, with plenty of breaks and staff to support you and answer any questions you may have.

  • 4. Sleep Diary at Home

    At home, your child will wear an actigraph on their wrist for seven days. This will give us precise information on when they fall asleep and how often they wake up during the night. On your end, you will need to complete a simple sleep diary for 7 days to record sleep patterns and daily routines following injury. You will complete the diary online or on paper (your choice).

  • 5. Thank You & Follow-Up

    You will need to return the actigraph and diary (if done on paper) via a prepaid envelope we will provide. You’ll later receive a summary of findings and be invited to hear about the results and next steps in the research.

  • 6. Focus Group

    The parents/adolescents who agree to participate in our focus group will be sent an online link to take part. The focus group will last between 1-2 hours.

What to Expect: Before, During, and After the Research Visit

Before your visit, you will receive study information explaining what your participation involves. During your visit, both you and your child will attend a research session at one of our two study sites. Afterward, you’ll be asked to use a sleep tracking monitor called an actigraph (resembling a wristwatch) and complete a sleep diary at home for one week.

There is also an optional focus group you may choose to join later where you will be asked your views on sleep interventions.

  • Before your visit, a member of our research team will contact you to provide information about the study and answer any questions you may have. You will receive an information sheet and be asked to sign a consent form before taking part.

    We will also ask you to complete some questionnaires about your child’s sleep, wellbeing, and daily life. If you are unable to complete these before your visit, there will be an opportunity to fill them in on the day.

    Your visit will take place either at Queen Mary University of London (QMUL)or University College London (UCL). We’ll confirm the location with you in advance.

    Our study is currently recruiting families directly through the hospital. If you have not received an invitation from our team, you will not be able to participate at this time.

  • When you arrive, a member of our research team will welcome you and guide you through the day. We’ll explain each part of the session before starting and make sure both you and your child are comfortable. The visit is designed to last most of the day, with time for breaks, snacks, and meals.

    Your child will take part in age-appropriate activities designed to help us understand their thinking skills, attention, and behaviour. You may also be asked to complete some questionnaires about your child’s routines and wellbeing. Our team will be available throughout to answer any questions and provide support.

    Families are always welcome to contact us before the visit with any questions or special requests.

    Our Measures

    Neurocognitive measures

    • On the day of the assessment the children will be doing age appropriate standardised tests that explore their perceptual, language, attention, memory and motor (younger children) abilities. A standardised test allows the comparison of the child’s performance with other children their age. The assessments they will be doing involve tasks like completing a pattern, finding a symbol quickly, defining the meaning of a word etc. Younger children and babies will be doing things like imitating a sequence demonstrated by the experimenter, shaking rattles etc. Taken together these tasks will allow us to pinpoint if there are specific areas that need strengthening. The tests we will most commonly be using are the Wechsler Abbreviated Scale of Intelligence, the NEPSY, and the Bayley Scales of Infant and Toddler development.

    Questionnaires

    • Parents and in some cases children themselves will be asked to fill out questionnaires (either in paper format or on the computer). These questionnaires will be measuring a variety of behaviors that relate to the child. First and foremost, the parent will be asked to complete questionnaires with respect to their child’s sleeping patterns and routines as well as questionnaires related to sleeping problems. They will also be asked to fill in questionnaires related to everyday behaviors that measure how well the child can adapt to their environment and master age appropriate skills. In addition, depending on the child’s age, parents will be asked to complete questionnaires related to their child’s conduct and sociability as well as questionnaires that investigate their planning and inhibition skills. Some of the questionnaires we will be using include the Adaptive Behavior Assessment, the Brief Rating Inventory of Executive Function, the Sleep Disturbances Scale for Children and the Brief Infant Sleep Questionnaire.

  • Actigraph & Sleep Diary: At-Home Monitoring for 7 Days

    • At the end of your visit, you will receive an actigraph, a small device worn like a wristwatch that monitors sleep patterns and daily activity levels. You can find out more information about the actigraph below

    • Alongside this, you will need to fill out a simple sleep diary each day for 7 days. These together will help the research team get a detailed picture of your child’s sleeping patterns at home following injury.

    Returning Your Materials

    • At the end of the week, you will return the actigraph and completed sleep diary using a prepaid envelope provided by the team.

    Focus Group

    • You may be invited to a focus group where you can discuss your thoughts about the study as well as your views on sleep interventions. This will help us design a better study in the future as well as develop an intervention study that will be acceptable by parents and children as well.

Actigraphy

What does an actigraph measure?

An actigraph is a small device, worn like a watch, that records movement, light, and temperature. From this information, researchers can learn about patterns of activity, rest, and sleep. Actigraphy provides valuable insights into everyday behaviour without the need for invasive procedures.

How do you wear an actigraph?

The actigraph is worn on the wrist, just like a watch. It is waterproof and robust, so children can wear it all the time, including while bathing or swimming. The device does not need charging or maintenance during the study period, and it does not give any feedback to the wearer.

We have three short, step-by-step videos below to guide you through putting on and adjusting the actigraph:

You can find further details in the GENEActiv Participant Information Sheet (PDF).

For any other questions you can ask us on the day of your visit or contact us.