32 Using normalisation process theory (NPT) to explore challenges of implementing digital advance care planning
Year: 2025
Type: conference-paper
Abstract: Aim To explore stakeholder views on using digital systems to document and share advance care plans in palliative and end-of-life care. Background Digital approaches are being explored globally to support documenting and sharing advance care plans (ACPs) in palliative and end-of-life care. However, stakeholder views and experiences remain poorly understood, hindering implementation. Methods Qualitative study utilising interviews and focus groups with health professionals (n=52) in community and hospital settings, patients (n=29), and carers (n=15) across two regions of England. Normalisation Process Theory (NPT) constructs (Coherence, Cognitive Participation, Collective Action, and Reflexive Monitoring) were used as a framework for analysis. Results Health professionals were often unclear about which settings could access the data they documented, and there was disagreement over which patients were eligible for a digital ACP. Patient and carer views differed on who should have a digital ACP and when it should be initiated. Potential benefits of digital ACP systems were recognised, but all participants remained uncertain about the real impact of systems on patient care. Ambulance teams needed quick access to clear information, but some could not access this despite consistent provision by specialist palliative care. Care home teams stated they could contribute ACP data, but their systems were not interoperable with health services. GPs and nurses faced challenges with patients registered on multiple systems. Evaluating system effectiveness was challenging without clear success measures, as current evaluations primarily focus on registration and documentation rather than actual use or impact. Patients, carers, and ambulance teams reflected on whether an absence of information had compromised care. Conclusions Health professionals who were familiar with documentation knew little about how it was accessed when needed, whether the information was acted upon, and, if it was, how the digital system contributed. Patients see value in these systems but seek better integration of independent public-facing ACP resources with existing health records. Unique Contribution This study applied an NPT framework to explore the experiences of health professionals, patients, and carers, highlighting the challenges in implementing digital approaches to advance care planning. Implications To improve understanding and effectiveness, routine service evaluations in healthcare settings should measure the use of information stored in these systems. Evaluations should incorporate patient and carer feedback to assess how digital records are shared, accessed, and acted upon. Understanding the lifecycle of a patient’s digital record and its impact on their care is essential for refining and improving these systems.
Authors: Jacqueline Birtwistle, Matthew Allsop
Institution: University of Leeds
Language: English
Field: Medicine
Domain: Health Sciences
Open Access status: gold
OpenAlex ID: W4414089140