Ethical considerations when conducting research with children and young people with disabilities in health and social care

Geraldine M Macdonald, Patricia McNeilly, Berni Kelly

Research output: Contribution to journalArticle (Academic Journal)

50 Downloads (Pure)

Abstract

Background: Rights based approaches to conducting research with children and young people are now widely accepted by those working within the field. Such approaches focus on the voice of the child and are underpinned by a firm recognition that children are experts on their own lives. Despite their participatory rights, disabled children and young people are less likely to take part in research.

Aim: In this article, we draw on doctoral research conducted with disabled children and young people and explore the ethical issues that arose around access and recruitment, consent, anonymity and confidentiality and dealing with sensitive issues. Essentially here we discuss what worked in addition to the challenges that we faced.

Discussion: Issues that arose in the planning and conduct of the research are explored here and recommendations for future researchers are made. Research with disabled children and young people can pose additional ethical challenges and while there is an emerging literature around this aspect of childhood research, it needs further development.

Conclusion: Additional planning and preparation is key in order to ensure that disabled children and young people can participate in research in a meaningful way and research is conducted in an ethical manner.

Implications for practice: This article has clear implications for both research and nursing practice in terms of communicating with disabled children and young people, enabling them to express their views and participate in decisions about their lives.
Original languageEnglish
JournalNurse Researcher
Early online date23 Jan 2020
DOIs
Publication statusE-pub ahead of print - 23 Jan 2020

Structured keywords

  • SPS Centre for Research in Health and Social Care

Keywords

  • disabled
  • children
  • young people
  • research
  • ethics

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