Research ethics

‘Research… with children and young people!?’ Unsurprisingly, this shocked reaction is still experienced on many occasions – both within health and social care, and among the public. Yet, we know that it is practical to undertake, can be done ethically, effectively, and can make a meaningful difference to the wellbeing and survival of children and young people with a range of health conditions. After all, they’re not just ‘mini adults’ are they?

In 2018, Hugh Davies, Bob Phillips, Jen Preston and I were commissioned to produce a series of articles on the topic of research with children and young people, to be published in the journal Archives of Disease in Childhood throughout 2019. The articles offer insight into some of the complexities of undertaking research with children and young people, along with practical strategies of how we can move forward and how we can work together to ensure a better understanding of the need for children, young people and their families to be able to take part, engage with, and shape research – which after all, belongs to them.

We have also produced a series of simple guides. summarising the articles with some key messages and strategies. Please feel free to share widely!

Simple guides to research with children and young people

Journal articles addressing research with children and young people

  1. Preston, J., Stones, S.R., Davies, H. & Philips, B. (2019). How to involve children and young people in what is, after all, their researchArchives of Disease in Childhood 104(5): 494-500. Doi: 10.1136/archdischild-2018-315118.
  2. Davies, H.T., Philips, B., Preston, J. & Stones, S.R. (2019). Making research central to good paediatric practiceArchives of Disease in Childhood 104(4): 385-388. Doi: 10.1136/archdischild-2018-315117.

Written by simonrstones

Simon R. Stones BSc (Hons) is a multi-award winning patient advocate, consultant and researcher from Bolton in the United Kingdom. He was recognised in 2019 as one of the top 100 most influential people with disabilities in the UK, and was the winner of the international WEGO Health Award for Patient Healthcare Collaborator in 2017. He is a passionate advocate and ambassador for people living with chronic conditions and invisible illnesses, inspired and empowered by his own journey with juvenile arthritis, fibromyalgia, and inflammatory bowel disease since childhood, as well as a carer for his mother. He is currently an Associate Fellow of the Royal Commonwealth Society, a trustee of Fibromyalgia Action UK and RAiISE, board member of the European Network for Children with Arthritis (ENCA) and President of the European Network of Fibromyalgia Associations (ENFA).

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