Protecting the privacy of child participants

Description

Children with disabilities are amongst the most vulnerable populations, and safeguarding their privacy is one of the most fundamental steps in the collaboration process. Before starting your engagement, you need to build trust with the participating children, their teachers, parents, or other organizations that are taking care of them.

Suggestions

Project Explanation and Goals

Clearly explain the project, its goals, what it wants to achieve, why you need the kids’ input, what is the involvement process, what are the expectations for kids, and what is in it for the kids. Ensure that everyone involved understands the purpose and potential impact of this collaborative process.

Informing about Privacy Protection

Provide clear and plain language information about how you will be protecting the children’s identities, their lived experiences, and their ideas. Sharing consent forms, assent forms, media release forms, contributor license agreements, or any other document that outlines the details of how you protect the children’s privacy would help families and educators to understand your position and make decisions based on what they feel comfortable about.

Limiting data collection and storage

Limit data collection to only essential information necessary for the co-design process. Minimize the amount of personally identifiable information gathered and refrain from storing unnecessary sensitive data.

Implement secure data management practices: save data in secured or password protected folders to protect the confidentiality of children’s information.

Respecting consent and assent

Seek informed consent from parents or guardians, and encourage the children to provide assent to participate. Present the project to them in their preferred communication modality, and emphasize their right to withdraw at any point throughout your collaboration process. Try to renew consent regularly and informally. For example, you can ask the child if they would like to participate at the start of any workshop activity. Let them know that they can change their decision to participate at any point and that’s ok.

Having a distress protocol

Some children also may not be able to communicate when they are in distress. Ask parents and teachers about signs of distress for each child. Have a distress protocol to close the study once these signs become apparent. Discuss this protocol ahead with your research/design team ahead of the workshop to make sure everyone is aware of signs and the required actions.

Having a child safeguarding policy

If you are an organization that often collaborates with children especially with children with disabilities, it would be best to develop a guideline for a child safeguarding policy, where all members of your organization can access that resource and follow the best practices to work with kids with disabilities. This policy should outline best practices, privacy protection protocols, and guidelines for working with children with disabilities.

Reviewing the existing child safeguarding policies

if you are carrying out the session in the child’s familiar setting, such as schools or hospitals, or research labs, etc. be aware of the local safeguarding procedures in place and make sure to abide by these.