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Ethical issues in paediatric nontherapeutic pain research
Päivi Kankkunen1, Katri Vehviläinen-Julkunen, Anna-Maija Pietilä
1University of Kuopio, Department of Nursing Science, PO Box 1627, 70211 Kuopio, Finland. Paivi.Kankkunen@uku.fi
Insights
Ethical challenges in pediatric nontherapeutic qualitative pain research are complex, requiring careful consideration of emotional distress and informed consent from children and parents. Protecting participants
Area of Science:
- Pediatric Pain Research
- Qualitative Research Ethics
- Child Psychology
Background:
- Nontherapeutic qualitative research involving children's pain presents unique ethical considerations.
- Existing literature highlights challenges in obtaining informed consent and protecting participants.
- Family dynamics in pediatric pain research add complexity to ethical decision-making.
Purpose of the Study:
- To delineate key ethical issues in pediatric nontherapeutic qualitative pain research.
- To compare diverse perspectives on obtaining informed consent from child participants.
- To offer insights based on practical experiences in a family interview study.
Main Methods:
- Analysis of existing research literature on ethical issues in qualitative studies.
- Examination of practical experiences from a family interview study on pediatric pain.
- Comparative review of different approaches to informed consent in child research.
Main Results:
- Ethical challenges permeate all stages of qualitative pain research with children.
- Assessing risks (emotional distress) versus benefits is crucial but difficult.
- Balancing parental permission, child assent, privacy, and confidentiality is essential.
Conclusions:
- Protecting children from harm in pain recall studies may require post-data collection support.
- Engaging children in pleasant activities can mitigate distress after data collection.
- Unbiased data analysis and reporting necessitate careful researcher role assessment.
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.
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