A Grounded Theory Study Exploring Palliative Care Healthcare Professionals’ Experiences of Managing Digital Legacy as Part of Advance Care Planning for People Receiving Palliative Care

Stanley, Sarah and Higginbotham, Karen and Finucane, Anne and Nwosu, Amara (2023) A Grounded Theory Study Exploring Palliative Care Healthcare Professionals’ Experiences of Managing Digital Legacy as Part of Advance Care Planning for People Receiving Palliative Care. Palliative Medicine, 37 (9). pp. 1424-1433. ISSN 0269-2163

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Abstract

Background: Digital legacy refers to the online content available about someone following their death. This may include social media profiles, photos, blogs or gaming profiles. Some patients may find it comforting that their digital content remains online, and those bereaved may view it as a way to continue bonds with the deceased person. Despite its growing relevance, there is limited evidence worldwide around the experiences of palliative care professionals in supporting patients to manage their digital legacy. Aim: To identify palliative care healthcare professionals’ experiences of supporting patients receiving palliative care in managing digital legacy as part of advance care planning discussions. Design: A constructivist grounded theory approach was used to understand healthcare professionals’ experiences of managing digital legacy. Semi-structured interviews were carried out. Setting and participants: Participants were 10 palliative care healthcare professionals from across the multidisciplinary team working in a hospice in the North-West of England. Results: Four theoretical categories were found to revolve around an emergent theory ‘understanding the impact of digital legacy’ which describe the experiences of palliative care healthcare professionals managing digital legacy as part of advance care planning. These were ‘accessing digital legacy’; ‘becoming part of advance care planning’; ‘impacting grief and bereavement’; and ‘raising awareness of digital legacy’. Conclusions: The emerging theory ‘understanding the impact of digital legacy’ offers insight into the knowledge and experiences of healthcare professionals working in a palliative care setting. Digital assets were viewed as being equally as important as physical assets and should be considered as part of advance care planning conversations.