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

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

Patricia McNeilly Lecturer, School of Nursing and Midwifery, Medical Biology Centre, Queen’s University Belfast, Belfast, Northern Ireland
Geraldine Macdonald Professor of social work, University of Bristol, Bristol, England
Berni Kelly Senior lecturer, Queen’s University Belfast, Belfast, Northern Ireland

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.

Nurse Researcher. doi: 10.7748/nr.2020.e1645

Peer review

This article has been subject to external double-blind peer review and has been checked for plagiarism using automated software

Correspondence

p.mcneilly@qub.ac.uk

Conflict of interest

None declared

McNeilly P, Macdonald G, Kelly B (2020) Ethical considerations when conducting research with children and young people with disabilities in health and social care. Nurse Researcher. doi: 10.7748/nr.2020.e1645

Acknowledgement

The authors would like to thank members of the Disabled Children and Young People’s Participation Project who assisted with the planning and conduct of this research. This work was supported by the Economic and Social Research Council, Swindon, UK (Grant Number ES/G041369/1)

Published online: 23 January 2020

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