The child’s right to participate in research: myth or misconception?

Abstract

The growing acceptance of the need for children's participation in any issues that affect them, including research, has been fuelled by the 'children's rights' agenda, which has occurred in the UK since the ratification in 1991 of the UN 'Convention on the Rights of the Child' (UNCRC, 1989), which provides a framework for the development of national policies and laws to protect the rights of children (O'Hallorhan, 1999). There is a clear indication of this both within the UNCRC (1989) and the growing 'sociology of childhood', where the importance of children actively constructing their own lives by, for example, participating in and negotiating their own health care, education and social welfare by utilizing skills that go unrecognized (Mayall, 1998). With the current emphasis in the NHS on evidence-based care there is a need for those working with children and young people to include best evidence from research with children (as opposed to 'on' children) in both clinical and healthcare decisions. Recommendations for future research with children include the use of more innovative methodologies, such as action research and focus groups that will enable children to actively participate and to describe personal experiences through their own unique points of view.

Children&s views on microneedle use as an alternative to blood sampling for patient monitoring

“…Minimally invasive MN application as an alternative to hypodermic needle use may be expected to be more favourable to children given the unpopularity of the latter, but also potentially facilitate closer monitoring. Suitability recommendations, however, currently originate from adults, with children's views uncharted, despite their acknowledged rights for such involvement . Without this, MNs potentially risk rejection by children emulating the fears and disapproval associated with the conventional technique.…”

Ethical Review and Children's Research in Ireland

“…The comparatively vague role of the researcher in participatory research might also be one reason for male researchers' experience that in conducting research in children's natural environments, they frequently encounter a high level of suspicion and gender-based problems of access (Barker and Smith, 2001;horton, 2001). On the other hand, as researchers who employ such participatory methodologies have pointed out and as has become increasingly more accepted in recent years, such work can be considered to have a particularly positive ethical value and to ensure that children's rights are taken seriously in the research process, insofar as it promises to remedy the problem of children's comparative powerlessness in the research situation (John, 2007;Morrow and Richards, 1996;Valentine, 1999).…”

MRI Research Proposals Involving Child Subjects: Concerns Hindering Research Ethics Boards from Approving Them and a Checklist to Help Evaluate Them

“…The process of ethical review and approval of protocols involving children in scientific/medical research clearly has a number of issues that have been delineated within the literature 25,26,27,28,29,30,31,32,33 .…”