Re-imagining Legacy in the Context of Paediatric Palliative Care
Research type
Research Study
Full title
“Forever and Ever Without End“: A Child-Centred Design Approach to Re-imagining, Capturing and Curating ’Legacy’ in the Context of Paediatric Palliative Care
IRAS ID
261276
Contact name
Lynda Brook
Contact email
Sponsor organisation
Alder Hey Children's Hospital Trust
Duration of Study in the UK
0 years, 7 months, 29 days
Research summary
“I don’t see the point of measuring life in terms of time any more. I would rather measure it in terms of what I actually achieve. I’d rather measure it in terms of making a difference.” (Stephen Sutton, 17 - shortly before he died of cancer) \n\nThe concept of ‘legacy’ is conventionally understood in adult terms and commonly defined as something handed down to a predecessor, hence relevant, obviously, to every living person. And yet, very little, is known about how children and young people (CYP) conceive of their legacies as they face the real possibility of the end of their physical lives.\n \nThis project will, for the first time, capture and communicate to the wider public, CYPs’ narratives of ‘legacy’ in the context of paediatric palliative care as co-defined, co-captured and co-curated by themselves and their significant others. \n\nThis project aims to deepen existing literature which shows that understanding ‘legacy’ in such a profound context, enhances the sense-making, psychological and affective health outcomes of CYP and their significant others. \nThis research is aligned with the rapidly growing international evidence base on recognition of the individuals’ right and desire to reclaim and design their own palliative and end-of-life experience in meaningful & desirable ways.\n \nA series of Legacy-making Creative Sessions are co-designed and led by the clinician, CYP and their intimate other. Underpinned by robust ethical protocols, data will be collected through Alder Hey Paediatric Palliative Care Unit. \n\nOutcomes are two-fold; 1. Novel theoretical contributions on the concept of legacy and its potential impact on health outcomes, 2. Legacy-making Creative Session ‘toolkit’ as a potentially inclusive healthcare intervention\n\n
REC name
North of Scotland Research Ethics Committee 1
REC reference
19/NS/0068
Date of REC Opinion
22 May 2019
REC opinion
Further Information Favourable Opinion