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The participation of children, young people and their families is an important component of the child health research process. Children and young people's right to participate in and benefit from research is laid out in the United Nations Convention on the Rights of the Child (UNCRC).1 Researchers and healthcare professionals have a duty to respect, protect and help fulfil those rights. The Ethical Research Involving Children Partnership2 built on the work of the UNCRC and produced the International Charter for Ethical Research Involving Children. It called on researchers to be open, reflective and collaborative in their ethical decision making. In recent years, there has been considerable activity in the UK advancing this agenda. INVOLVE3 was established in 1996 to support active public involvement in the National Health Service, public health and social care research. This is now funded by the National Institute of Health Research (NIHR), as is the Generation R network, a national young people's advisory group with local groups across the UK to support the design and delivery of paediatric research. Organisations, such as the Nuffield Council,4 have determined how healthcare professionals can ethically involve children and young people in research to ensure that healthcare services are safe and effective. This has begun a cultural shift in perceptions about involving children and young people in research design and delivery. It, however, continues to be important that all the perceived barriers to involvement of infants, children and young people in research are removed.2–5
In 2012, the Royal College of Paediatrics and Child health (RCPCH) ‘Turning the Tide’ report5 highlighted the importance of child health research. It emphasised the need for …
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