Resisting the (re-)medicalisation of dying and grief in the post-digital age: natural language processing and qualitative analysis of data from internet support forums

Abstract In the mid-twentieth century, the social movement of death revivalism sought to resist the medicalisation of dying and grief through promotion of the dying person retaining autonomy, and societal openness toward death and bereavement. Despite this advocacy, present-day dying in high income countries is largely institutionalised, with value placed on control over the body and emotions. These phenomena are at odds with the ambitions of death revivalism, and demonstrate the re-medicalisation of dying and grief. Furthermore, contemporary society is continually advancing into the post-digital age, reflected in digital technologies being a tacit part of human existence. Within this framework, this study aims to investigate how people living with life-limiting illness and their loved ones experience, negotiate, and resist medicalisation of dying and grief through online internet forums. We collected posts through web-scraping and utilised Natural Language Processing techniques to select 7048 forum posts from 2003-2020, and initially categorise data, before utilising Inductive Thematic Analysis, which generated two major themes. The theme of ‘Comfort’ describes online forums facilitating psychosocial support which was often used to compensate for systemic deficiencies, especially during the Covid-19 pandemic. Common sources of comfort included animal companions and spirituality, in stark contrast with the medicalised model. The theme of ‘Capability’ describes online forums acting as solutions for people facing disempowering care systems, including providing information on legal rights and benefits which may not be otherwise easily available, and facilitating collective advocacy. Our findings indicate that community-led online forums can play an effective and sustainable role in democratising care and retaining agency when facing life-limiting illness and grief. Future palliative and bereavement care research must focus on how online forums can be integrated into existing systems, made transparent and accessible, be adequately funded and structured, and be optimised, including compensating for service disruption encountered during future pandemics.