NeDiPal will conduct qualitative, ethnographically oriented research with specialist palliative home care (SPHC) providers, care recipients, relatives, and other informal caregivers.
The research project is the main part of the researchers Marie Skłodowska-Curie Postdoctoral Fellowship which will be hosted by VUB at the Brussels Institute for Social and Population Studies (BRISPO) starting in March 2026. The fellowship is financed by the European Commission.
SPHC are multidisciplinary teams that intervene at the private homes of terminally ill patients. They support existing care providers, such as GPs, nursing services, and informal caregivers.
NeDiPal uses an innovative approach by analyzing the co-production of care work between SPHC providers and patients, relatives, and informal caregivers through the lens of Luhmannian systems theory. This lens allows for conceiving SPHC providers as organizational systems. Patients, relatives and informal caregivers, on the other hand, also constitute systems. Both systems are operationally exclusive but are co-dependent and form relevant environments for one another.
As organizations are characterized by formal structures, SPHC providers are structurally distinct from families and informal caregivers and therefore engage with digital technologies in different ways. This defines the two main research objectives (see below).
Investigate professionals’ use of digital technologies for organizational tasks, focusing on identifying formal and informal patterns like workarounds, invisible work, tinkering, and reverse engineering through interviews and ethnographic fieldwork.
Examine how care recipients, relatives, and informal caregivers use digital technologies in palliative care work, focusing on patterns of adoption, bypassing, and abandonment through ethnographic fieldwork.
Scientifically, NeDiPal allows for building a citation index of peer-reviewed publications on digitalization and co-production of palliative care through organizations – a research field, that is currently underdeveloped.
Sociology of medicine does not consider sufficiently the meso-level of social order, which includes organizations, as well as their role in co-producing health care. The systems theoretical lens is needed for assessing the various complex dynamics that occur during co-production of health services using digital technologies.
Economically, the project can help identifying cost-effective digital technologies in palliative home care.
Digital technologies which are not used or abandoned (e.g., because of a lack of digital literacy) are wasting taxpayer and health insurance money. Together with expert opinions, NeDiPal allows for more specifically identifying the reasons for adoption or non-adoption of digital technologies, thereby saving money in the mid- and long term.
The societal impact is that the project can help identifying pathways for making palliative home care more accessible for patients through digital technology use.
In European countries, there is a gap between preferred and actual places of death. Digital technologies have the potential to make palliative home care more accessible to a wider range of patients, e.g., patients living alone or with disabled informal caregivers.
Anna is currently Marie Skłodowska Curie Fellow at Vrije Universiteit Brussel. She previously worked on different research projects about outpatient as well as inpatient palliative care in Germany.
Email: Anna.Bauer@vub.be
Werner is professor and senior researcher at Vrije Universiteit Brussel. He previously co-directed a FWO-funded SBO research consortium "Digital Ageing".
Email: Werner.Schirmer@vub.be