Ethical issues in paediatric nontherapeutic pain research

Abstract

The purpose of this article is to describe the main ethical issues in paediatric nontherapeutic qualitative pain research. It is based on an analysis of the research literature related to ethical issues in research and on experiences from a family interview study focusing on pain assessment and management in children aged 1-6 years. In addition, different views concerning obtaining informed consent from children, as published in the research literature, are compared. Ethical challenges occur during all stages of qualitative research. The risks of emotional distress and possible benefits of the results must be assessed prior to conducting a study. However, risks and harm are difficult to avoid in a study in which the research area, pain, raises emotional distress in both parents and children. The children's assent and parental permission are both required. It is essential to obtain informed consent from all family members when family research is conducted. Participants' privacy and confidentiality should be protected during data collection, analysis and publication. Protecting children from harm may be impossible during pain research in which they are required to recall a painful postoperative period. However, after data collection they can be assisted to focus on pleasant activities, for example, by engaging in playful activities with them. Finally, the role of the nurse and the researcher should be carefully assessed, especially in qualitative research, in order to be able to analyse the data and report the findings in an unbiased manner.