Practical guide 1: Involving children and families as research participants

We aim to use processes that ensure children, families, and where appropriate, professionals are well informed and willing to participate, and that they are respected and supported throughout the entire research process.

We want to ensure that children and families play a central role, both as research participants and, where appropriate, as co-researchers. Their contributions should be respected, and their voices validated throughout the research process.

We strive to adapt research tools, reports, and processes to ensure they are suitable for children and families and reflect the diversity of children and families.

The purpose of this guide is to equip researchers with suggestions on how to involve children and families as research participants, taking into account both their strengths and areas where they may need additional support.

It is important to recognize that we are conducting research with a heterogeneous group. This means that there will be varying needs depending on whether the research participants are children, adolescents, or adults. Furthermore, consideration should be given to participants' cognitive abilities and communication skills, as well as how familiar they are with the research team and the research process.

Recruitment of Participants

To ensure that recruitment includes end users—the target group of the research—it can be helpful to use as many channels as possible for information dissemination, such as social media, networks, organizations, etc.

Study Information and Consent

• Ensure that the written information about the study and consent is simple, clear, and informative, and where necessary, includes visual support.
• Provide opportunities for children and families to ask questions about their participation. Listen actively and ensure that the participant understands what is necessary. Ask clarifying questions to confirm understanding. This may take time, but it is important before obtaining consent/assent.
• Use clear language to avoid misunderstandings, both in spoken and written information.
• The written information and the design of the information sheet should be clear—for example, avoid too much text on each page.
• Be clear about what will be required of the participants, and ensure that the spoken and written information are consistent.
• Visual support (illustrations, photos, images) can be used to clarify key areas.
• Consider including photos of the researchers that the children and families will meet, as well as the location where the research activities will take place.

Practical Tips for Scheduling Research Activities

• Consider inviting participants to an informal meeting before the actual data collection, so they can get familiar with the research team and the environment.
• To avoid stress, schedule meetings based on the needs of the child and family.
• Depending on the age of the participants, it can be helpful to take into account mealtimes, nap times, and other routines the child and family may have.
• Consider using images to show the building, entrance door, and other landmarks to make it easier to find and recognize the location.
• Ensure that the route to the meeting place is clearly signposted.
• If necessary, arrange for parking permits for participants and provide a map showing the entrance, parking area, and meeting location.
• Consider leaving a mobile number that participants can use to reach you by SMS or phone in case of questions.
• Send an SMS reminder on the day of the meeting.
• Ensure that children and families have consistent contact with the same person from the research team and that they receive ongoing information from the team.
  

Providing a Child- and Family-Friendly Environment

Structure of the physical environment

• Ensure that the environment is adapted to the needs of children and families (for example, a minimalistic or cozy setting). This can help the child and family feel calm. Children with additional support needs may experience sensory difficulties, which may require environmental adjustments to enhance their engagement and participation.
• Whether you are conducting interviews, observations, or including participants in other ways, it is important to tailor the environment as much as possible to the needs of the child and family.

Minimizing distractions

• Ensure the space is calm and free from distractions (even something like a ticking wall clock may be disturbing for some).
• Depending on the child’s needs, avoid having too many pictures or posters on the walls that might be overstimulating. Keep only what is essential for the research activity.
• Consider appropriate furnishings and furniture suited to the child.

Lighting

Children with additional support needs may be sensitive to and distracted by sounds, such as high-pitched voices. They can also become anxious due to unexpected loud noises.

• Reduce environmental noise as much as possible.
• If possible, inform the child about any sounds that may occur.
• Ask the child to let you know when a sound becomes distracting or even painful.

Sounds

Temperature

Children with additional support needs may react differently to temperature. They may also be sensitive to certain materials, making some types of clothing uncomfortable.

• Since it is not always possible to adjust the room temperature, inform the child and family in advance so they can bring extra clothing if needed.

Scents

Children with additional support needs may be sensitive to certain scents, which can affect their comfort, focus, and ability to participate.

• Avoid using scented products such as perfumes, air fresheners, or scented cleaning supplies in the research environment.
• If the space has a persistent scent (e.g., from previous use), inform the family in advance so they can prepare accordingly.

Amenities

• Ensure that there is a waiting area available for families and siblings, equipped with toys, books, and other suitable items.
• Provide access to a family-friendly restroom that is adapted for any assistive devices if needed.
• If the data collection is extensive, it may be helpful to take breaks so that the participant can rest.

Support during research activities

• Ensure that the participant knows what to expect (who will be present, how long it will take, etc.). Not knowing what will happen may create anxiety and impact data collection.
• Consider using visual aids.
• It may be helpful to use a schedule or checklist outlining all activities. A reward or break can help maintain motivation if there are many activities.
• Using a timer or clock may help some children keep track of time, while for others it may cause stress and anxiety.
• For some children, using signs such as red/stop, green/go, or take a break can be helpful. A visual signal may be easier and more effective for the child than having to verbally express when they need a break.
• Adapt your language and information to the participant’s cognitive abilities. Gather information from a parent, teacher, or other close person about the best way to communicate with the child and family.
• To avoid misjudging a participant’s abilities, consider using images in the research materials.
• Ensure the participant has understood your questions or instructions. Ask simple and clarifying questions if needed.
• Where appropriate, involve a caregiver or parent to assist as needed and to pilot test the questions.
  

Involving participants in studies with multiple contacts

• Use regular and brief emails or newsletters to maintain contact with participants.
• Sending personal greetings can be a way to help some participants stay engaged in a project.
• Fridge magnets with contact information can be helpful for some.
• It is important to be clear about the study’s structure and keep participants updated on where they are in the research process. Give advance notice when the process is approaching its end.

After completed research activities

• Follow up with a thank-you message via email, mail, or another appropriate method.
• Provide feedback regarding the results.
• Offer opportunities to ask questions about the results, for example during a meeting or via email.