• Palliative medicine · Sep 2024

    Exploring the contextual assumptions, interventions and outcomes of digital advance care planning systems: A theory of change approach to understand implementation and evaluation.

    • Andy Bradshaw, Matthew J Allsop, Jacqueline Birtwistle, Catherine J Evans, Samuel D Relton, Suzanne H Richards, Maureen Twiddy, Robbie Foy, Pablo Millares Martin, Sarah Yardley, and Katherine E Sleeman.
    • Cicely Saunders Institute of Palliative Care, Policy & Rehabilitation, King's College London, London, UK.
    • Palliat Med. 2024 Sep 21: 26921632412801342692163241280134.

    BackgroundDigital advance care planning systems are used internationally to document and share patients' wishes and preferences to inform care delivery. However, their use is impeded by a limited understanding of factors influencing implementation and evaluation.AimTo develop mid-range programme theory to account for technological, infrastructure and human factor influences on digital advance care planning systems.DesignExploratory qualitative research design incorporating Theory of Change workshops that explored contextual assumptions affecting digital advance care planning in practice. A mid-range programme theory was developed through thematic framework analysis using the Non-adoption, Abandonment, Scale-up, Spread and Sustainability (NASSS) framework, generating a conceptual model depicting contextual assumptions, interventions and outcomes influencing implementation.ParticipantsA total of 38 participants (16 from London, 14 from West Yorkshire and 8 online) including patients, carers and health and care professionals (including those with commissioning responsibilities).ResultsA conceptual model was generated depicting five distinct components relating to digital advance care planning system use: (sociocultural, technical and structural prerequisites; recognition of the clinical need for conversation; having conversations and documenting decisions; accessing, actioning and amending; and using data to support evaluation, use and implementation). There were differences and uncertainty relating to what digital advance care planning systems are, who they are for and how they should be evaluated.ConclusionsDigital advance care planning lacks shared beliefs and practices, despite these being essential for complex technology implementation. Our mid-range programme theory can guide their further development and application by considering technological, infrastructure and human factor influences to optimise their implementation.

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