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The Journey through Care: Palliative Care for children and young people, and their families: What? When? How? A Realist Inquiry

The aim of this research was to provide an increased understanding of how children with life-limiting or life-threatening conditions, and their family members, experience the current healthcare system, and the effect this has on whether or not they experience palliative care. The research used realist methods to understand how palliative care is delivered most effectively, to which children, and when. Patient and public involvement with young people played an important in the design of the study.

Findings showed that children and families want to feel respected, heard and supported by their healthcare services as they face difficult situations, such as frequent deteriorations in their child’s condition. These situations can be emotionally demanding for healthcare professionals too, and the delivery of palliative care depends on the development of trusted relationships between the child, their family, and their healthcare professionals. Senior leaders in healthcare have a role in promoting a palliative care approach and changing culture within healthcare organisations.

Funded by

National Institute of Health Research Doctoral Research Fellowship, DRF-2014-07-065.

Research team members

Dr Sarah Mitchell, Prof Jeremy Dale, Prof Anne-Marie Slowther, Prof Jane Coad


Patient and Public Involvement groups at Acorns Children’s Hospice, the NIHR CRN West Midlands Young Person’s Steering Group and Birmingham Children’s Hospital


Nov 2014-Jan 2020

Journey Through Care logo

Enquiries to:

Dr Sarah Mitchell

s dot j dot mitchell at sheffield dot ac dot uk

2020: SAPC / RCGP Yvonne Carter Award for Outstanding Early Career Researcher

2020: University of Warwick Medical School Best Thesis

2017: NIHR CRN West Midlands Awards: Highly Commended for Involving Patients & Users

A comprehensive publication list can be found here.