Conducting research with disabled children and young people in health and social care: ethical considerations

Background: Rights-based approaches for conducting research with children and young people are now widely accepted by those working in 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. However, children and young people with disabilities are less likely to take part in research.

Aim: To draw on doctoral research conducted with children and young people with disabilities to explore the ethical issues that arose concerning access, recruitment, consent, anonymity, confidentiality and sensitive issues, as well as what mitigated these issues.

Discussion: Research with children and young people with disabilities can pose additional ethical challenges. There is a growing body of literature about this area, but it needs further development.

Conclusion: Additional planning and preparation are vital in ensuring that children and young people with disabilities can participate in research in a meaningful way and that researchers conduct studies ethically.

Implications for practice: This paper has clear implications for research and nursing practice in terms of communicating with children and young people with disabilities, enabling them to express their views and participate in decisions about their lives.