Abstract

‘Legacy’ is a death-centred adult-oriented concept, conventionally defined and narrowly imagined. Legacy making activities in palliative care are proven to enhance sense-making and offer therapeutic benefits. However, research around legacy and legacy making is limited in definition, outcome, and ambition. This paper reports on an exploratory, interdisciplinary, design-led study aiming to reimagine ‘legacy’, in the sensitive and heavily under-studied context of paediatric palliative care. An inclusive design approach is adopted and children and young people are focused upon as the ‘lead design partners’ with potentially distinct and largely overlooked voices and viewpoints in palliative care. Both chronological and thematic perspectives are used to outline and discuss the issues and barriers emerged throughout the study. Three overarching themes i.e. Conceptual; Ethical; and Operational are identified as key challenges. Critical reflections are summarised under three insights on Legacy, Difficult conversations, and Life design. Future opportunities for research are outlined under four recommendations.

Keywords:

inclusive design; palliative care; legacy; paediatric

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Creative Commons Attribution-Noncommercial 4.0 License
This work is licensed under a Creative Commons Attribution-Noncommercial 4.0 License

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Aug 11th, 12:00 AM

Design Meets Death: Emergent Issues in a Research Study on Reimagining ‘Legacy’ in the Context of Paediatric Palliative Care

‘Legacy’ is a death-centred adult-oriented concept, conventionally defined and narrowly imagined. Legacy making activities in palliative care are proven to enhance sense-making and offer therapeutic benefits. However, research around legacy and legacy making is limited in definition, outcome, and ambition. This paper reports on an exploratory, interdisciplinary, design-led study aiming to reimagine ‘legacy’, in the sensitive and heavily under-studied context of paediatric palliative care. An inclusive design approach is adopted and children and young people are focused upon as the ‘lead design partners’ with potentially distinct and largely overlooked voices and viewpoints in palliative care. Both chronological and thematic perspectives are used to outline and discuss the issues and barriers emerged throughout the study. Three overarching themes i.e. Conceptual; Ethical; and Operational are identified as key challenges. Critical reflections are summarised under three insights on Legacy, Difficult conversations, and Life design. Future opportunities for research are outlined under four recommendations.

 

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