Children’s participation in research
Intended for healthcare professionals
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Children’s participation in research

Faith Gibson Senior lecturer in children’s nursing research, UCL Institute of Child Health and Great Ormond Street Hospital for Children NHS Trust
Alison Twycross Principal lecturer in children’s nursing, Faculty of Health and Social Care Sciences, Kingston University – St George’s University of London

A position statement on behalf of the Royal College of Nursing’s Research in Child Health (RiCH) group and Children’s and Young People’s Rights and Ethics Group

Consent is the invisible act of evaluating information and making a decision, and the visible act of signifying the decision (Alderson and Morrow 2004). It is generally accepted that a child should give positive consent to any intervention or participation in research, not simply fail to register dissent (Hill 2005). Consent is seen as an active and ongoing dialogue rather than a preliminary hurdle to get out of the way at the beginning of a study (Morrow and Richards 1996). This article and position statement are a response to a request for clarification around involving children in the research process, with a particular focus on consent from the RCN children’s and young people’s rights and ethics group. Their concerns included:

general fear of involving children in research

confusion over consent: the age at which a child can give informed consent and how to decide that a child is competent to make that decision

issues related to academic work and the need for consent

gaining access to children

problems with hospitals’ individual interpretations of guidance

issues with circumventing the research process and doing audit as less onerous

concerns that talking to children and families about their involvement in research was a view not shared by everyone.

The RCN Research in Child Health interest group (RiCH) response to these concerns is primarily intended for nurses and other allied health professionals designing and participating in clinical research that involves children. We hope that it may also be useful to parents and their representative organisations. The position statement should be read in conjunction with the guidelines listed in Box 1.

Nursing Children and Young People. 19, 4, 14-17. doi: 10.7748/paed2007.

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