Ethical issues in social research: difficulties encountered gaining access to children in hospital for research

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Abstract

Background

This paper recounts the difficulties experienced when the authors sought access to children in hospital for social research interviews. These were part of a 2-year study, funded by the Joseph Rowntree Foundation, aiming to explore the numbers, circumstances and experiences of children who spend prolonged periods in health care settings.

Methods

As the intention was to carry out ‘guided conversations’ with 24 young people in various different NHS locations, permission to do so was sought from a multi-site research ethics committee (MREC), and from several local research ethics committees (LRECs). Agreement was then necessary from NHS trusts, which were asked to nominate a liaison person to help identify and recruit children to the study. Consent was also required from individual parents and children. A series of unexpected delays encountered during this process are discussed in some detail. Eventually a sample of 15 children was achieved.

Discussion

The second part of the paper locates this experience within a wider context, noting that similar difficulties gaining access to children in NHS settings have recently been reported by other social researchers. Several possible reasons for this trend are identified and discussed. These relate to the role of MRECs and LRECs in screening social research proposals, recently implemented legislation about data protection, heightened concerns within the NHS about confidentiality and consent, and increasing awareness of the risk of child abuse in health care settings.

Conclusion

Finally, some suggestions for facilitating the access process are discussed. They include the sensitive and appropriate application of research governance frameworks to social research – including studies within health care settings. Ethical considerations and adequate protection of children are vital but, the authors argue, wherever possible children themselves should be encouraged to decide whether or not to participate in research. In addition, unnecessarily complex access procedures may adversely affect research outcomes.

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