Practical guide 5: Recruiting children as research participants in longitudinal studies

We will use processes to ensure that children and their families are informed and willing to participate, and are respected and supported at all stages of the research process.

We will ensure that children and their families play a central role both as research participants and as collaborators. Their input will be respected and their views taken into account throughout the research process.

We will adapt research methods, reports and processes to be appropriate for children and their families.

We will ensure that the input of children in research projects is recognized and valued and that they are compensated for their contribution to the research projects.

In line with CHILD's intentions for inclusive research practice, this guide aims to provide researchers with suggestions on how to engage children and parents as research participants, taking into account their strengths as well as areas where they may need more support. As children are not a heterogeneous group, there may be different requirements depending on their level of cognitive and communication skills and how familiar the child is with the research team.

Based on the results of a study of 167 Australian participants conducted by Haas, Costley, Falkmer, Richdale and Sofronoff (2014) for the Autism CRC, the following measures and approaches are recommended to optimize participant recruitment and retention in longitudinal projects.

Show understanding of individual needs and preferences of all participants

Trying to make individuals feel comfortable and satisfied with participating in the study:

• Formally design and conduct the study so that the research team is sensitive to the different communication, social and cognitive skills and preferences, physical abilities, lifestyle and sensory needs of all participants. Take into account that children have different abilities to function in groups.

Practical recommendations to take into account the different individual needs and preferences of participants: Choose a location for the study that is adapted to children with sensory sensitivities such as those who experience discomfort with noise, light and crowds.

• Offer data collection options that do not require travel or face-to-face meetings.
• Provide opportunities for participants to expand on their answers to questions.
• Provide opportunities for participants to give feedback to the research team on research methods, reports and processes.
• Be clear in your communication, adapting the language to the target audience, avoiding for example abstract formulations.
• Build trust with the child during recruitment or data collection.
• Provide the opportunity to conduct data collection in the home environment for children who need it.
• Remind and provide information about events and activities.

In addition, it is advisable that all researchers and other staff involved in the design and administration of research projects have training in and/or knowledge of the needs and circumstances of the children participating in the study.

Optimize the opportunity for participants to engage with the research

Maximize the range of options available to participants for them to engage with the project - communicate these clearly for example:

• Provide information on how, when and where to participate.
• Offer a choice of methods that give the option to choose social interactions or not.
• Allow for alternative forms of communication and materials e.g. digital/print, phone/email/post/face-to-face meetings.
• Provide the possibility to choose/opt out of receiving rewards and incentives.
• Offer different types of rewards and incentives.
• Offer additional options for participation in the research project based on participants' interests, capacities and competences.

Tailoring recruitment methods to best reach different groups of participants

To effectively reach and appeal to each individual category of participants, tailor the community networks, methods, communication channels and messages used to recruit participants.

• Recruitment can be done through social media, through networks, community associations, support groups and service providers, which can be an effective first step in recruitment.
• Effective methods for further recruitment are:
  • Identify key people within the group being studied. Individuals who are active advocates for the group can be helpful in recruitment.
  • The snowball effect, encouraging children and parents who have already joined the study to inform their family and friends to also join.
• Identification can be done through care, school, after-school and short-term care centers.

Control participants/Typically developed children

The non-disabled children needed as 'controls' in the study could be children from the general population who have a relationship with a person belonging to a category that is the subject of the research. These children are likely to be the most interested.

Two methods that have been shown to be effective in recruiting children into the control group are:

• Recruitment communications via social media, through networks, support groups and service providers.
• The snowball effect, by encouraging those participants already recruited to the study to entice their relatives and friends to join the study as participants.

For collaborative projects, it is recommended to develop a single set of communication materials, with consistent text, content, messages and visuals, thereby providing a clear and distinctive project description combined with a coordinated strategy and schedule of recruitment methods. This ensures a cost-effective use of resources in recruitment.

Key to participant motivation and engagement

• Clear communication of purpose and outcomes to participants
• Offer an opportunity for continuous updates on the progress of the research project and a final report on the study outcome. Demonstrate practical implementations of the research results to support the group in question.

Provide feedback to participants on how their participation contributes to the research in the field.

• Provide participants with an opportunity to learn about the research area.

The possibility of including children and their families as participants is increased if information letters etc. are designed to motivate participation in the project.

Avoid/be cautious about offering rewards for participation

If rewards are used, they should be small and used to acknowledge and appreciate the participant's contribution to the project.

Offer compensation for travel

Offer participants a travel allowance for each trip they make that is linked to the research project.

Offer the possibility of a safe community for participants

Previous research shows that people with disabilities are likely to value belonging to a community of like-minded people with similar interests where they can exchange information, ideas and share their life experiences.

This can be provided through a secure website within the project that:

• Provides unified project information, communication and activities
• Provides a sense of belonging and membership, and
• Provides the opportunity for online interaction between participants, and also with the research team.
• Task-oriented forums, discussion groups and social groups where participants can interact with each other and have the opportunity to meet and hear from the research team, focusing on topics related to children.
• Invitations to participate in, for example, social events run by stakeholder organizations, such as exhibitions and entertainment/performances. Researchers may consider offering participants either free or subsidized access in return for their involvement in the project.