Article Text
Abstract
Background The need for palliative care is increasing (World Health Organization, 2020) and it is essential to look at how emerging technologies can improve care for palliative patients and their carers in the future (Nwosu, Collins & Mason, 2018. Palliat Med. 32:164). With an increasing use of personal technology, many people are spending time creating their own online content (Office for National Statistics, 2020). This online content is often described as a digital legacy; the digital information that is available about someone following their death (Digital Legacy Association, 2021). There is limited evidence around the understanding of digital legacy amongst palliative care healthcare professionals and the benefits of supporting patients in managing their digital legacy.
Aim(s) To explore palliative care healthcare professionals understanding of digital legacy and how it could be included as part of advance care planning discussions.
Methods A qualitative single site study involving in depth interviews with ten palliative care healthcare professionals. Data analysis employed a constructivist grounded theory approach (Charmaz, 2006).
Results Data analysis is ongoing. Initial analysis shows a lack of understanding amongst palliative care healthcare professionals around digital legacy. Our results highlight the growing importance of digital legacy in various areas of palliative care. Participants described digital assets as important as physical belongings. The data highlights a concern around access to digital belongings following death, and the impact this could have on grief and bereavement.
Conclusions Exploration and understanding of views and experiences of healthcare professionals has relevance for policy and practice. A lack of understanding around digital legacy can create barriers to including digital legacy as part of advance care planning discussions and should be addressed through education and raising awareness around this developing topic. Results of this study will help us understand ways to create digital memories, to consider how to store them safely and how to encourage digital legacy to be considered as part of advance care planning conversations.