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

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.