A Grounded Theory Study Exploring Palliative Care Healthcare Professionals’ Experiences of Managing Digital Legacy as Part of Advance Care Planning for people with terminal illness

Sarah Stanley, Research nurse in Marie Curie Hospice Liverpool (bio)


The need for palliative care is increasing [1] 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.


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.


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.


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.


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: https://www.who.int/news-room/fact-sheets/detail/palliative-care
    [Accessed: 07.04.21]
  2. Nwosu, A.C., Collins, B. and Mason, S. (2018) Big Data analysis to improve care for people living
    with serious illness: The potential to use new emerging technology in palliative care. Palliat Med, 32
    (1), 164-166.
  3. Office for National Statistics. (2020) [online]
    Available at:
  4. Digital Legacy Association. (2021) [online]
    Available at: https://digitallegacyassociation.org/
    [Accessed: 07.04.2021]

Latest Digital Legacy Conference News