Article Text

Download PDFPDF

177 Views and experiences of palliative care healthcare professionals of supporting patients to manage digital legacy as part of advance care planning
  1. Sarah Stanley,
  2. Karen Higginbotham and
  3. Amara Nwosu
  1. Marie Curie Hospice Liverpool, Liverpool John Moores University, Lancaster University


Background The need for palliative care is increasing1 and it is essential to look at how emerging technologies can improve care for palliative patients and their carers in the future.2 With an increasing use of personal technology, many people are spending time creating their own online content.3 This online content is often described as a digital legacy, the digital information that is available about someone following their death.4 There is limited evidence around the experiences of digital legacy amongst palliative care healthcare professionals and the benefits of supporting patients in managing their digital legacy.

Aim This constructivist grounded theory study aims to identify palliative care healthcare professionals experiences of supporting palliative patients in managing digital legacy as part of advance care planning discussions.

Method Semi-structured interviews were conducted with ten (n=10) palliative care healthcare professionals working in a hospice in the North West of England. Interviews were recorded and transcribed and data was analysed using NVIVO.

Findings Four theoretical categories emerged from the data describing why palliative care healthcare professionals view digital legacy as an important topic. These four categories; ‘accessing digital legacy’, ‘becoming part of advance care planning’, ‘impacting grief and bereavement’ and ‘raising awareness of digital legacy’ were found to revolve around a core category ‘understanding the impact of digital legacy’. Digital assets, with both monetary and sentimental value, were viewed as being equally as important as physical assets and should be considered as part of advance care planning conversations.

Conclusions The emerging theory ‘understanding the impact of digital legacy’ offers an insight into the knowledge and experiences of healthcare professionals working in a palliative care setting. Further work is needed to explore palliative patients and their carers’ views on digital legacy and how they can be supported to manage this better in the future.


  1. World Health Organisation. (2020) [online] Available at: [Accessed: 07.04.21]

  2. Nwosu AC, Collins B, Mason S. Big data analysis to improve care for people living with serious illness: The potential to use new emerging technology in palliative care. Palliat Med, 2018;32(1):164–166.

  3. Office for National Statistics. (2020) [online] Available at:

  4. Digital Legacy Association. (2021) [online] Available at:[Accessed: 07.04.2021]

Statistics from

Request Permissions

If you wish to reuse any or all of this article please use the link below which will take you to the Copyright Clearance Center’s RightsLink service. You will be able to get a quick price and instant permission to reuse the content in many different ways.