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INVOLVING CHILDREN AND THEIR PARENTS IN RESEARCH DESIGN
  1. Suzannah Hibberd
  1. Southampton Children's Hospital

    Abstract

    Background Article 12 of the UN Convention on the Rights of the Child, states that children should be involved in decisions that directly affect them.1 Research involving children should ensure that the opinions and assistance of children and young people is sought at the beginning of the project as their perspectives may influence all aspects of the research design.

    Aim To describe the challenges recruiting paediatric patients and members of the public to consult on the design of a research project.

    Method Posters were put up around the Children's Hospital including pharmacy to recruit paediatric patients and parents to review a research proposal involving children with long-term conditions.

    Results There were two responses to the poster, a father and his 15 year old daughter, and a father with a 2 year old child. The father of the 15 year old attended the initial planning meeting, unfortunately the 15 year old and the father of the 2 year old were unable to attend on the day although both agreed to participate in the project. The meeting gave the opportunity to explain the research proposal and answer questions. It was established that the lay team would review the lay summary, participant information leaflet (PIL), and questionnaires that would be sent to the participants. It was arranged that all further contact would be via email due to travel constraints.

    Patient and public involvement (PPI) in research requires the individuals to be reimbursed for their time. The National Institute for Health Research rate is £18.75 per hour. The lay team members were informed of this and were reimbursed for attending the planning meeting.

    Conclusions The use of posters to recruit PPI into the research design had limited success. Since recruitment, the Children's Hospital has launched a youth partnership which may be able to assist in recruitment of lay team members in the future.

    The logistics of how to pay the lay team members needed to be resolved before their recruitment to ensure timely payment. A form has been created to enable timely payment.

    Face to face meetings allow for greater discussion between all lay members which may lead to more ideas and opinions being generated than when communicating via email. When working via email, the amount of time spent on the project can not be verified. It should be specified from the start how long the work is expected to take. An advantage of using email is that costs reimbursed do not include travel expenses.

    When involving young people of school age it must be remembered that meetings need to be arranged outside of school hours which may be difficult for the researcher to accommodate.

    The lay members of the team provided valuable feedback regarding the wording of the lay summary, PIL and research tools leading to alterations being made before submission to the ethics committee.

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