From artmaking to changemaking: Conceptualizing the PATCH (Palliative care patient-led change) programme

    Research output: Contribution to journalArticlepeer-review

    23 Downloads (Pure)


    This article charts the learning from an online, artmaking programme supporting individuals with a life-limiting illness. The programme sought to fill a gap caused by the temporary closure of face-to-face UK hospice-based day therapy programmes during the COVID-19 pandemic. Participants’ comments on this arts-based programme illustrated the sense of disrupted and diminished identity, linked to a deceased sense of agency, which terminal illness can bring. Responding to this need for increased agency led to the development of the PATCH (Palliative care patient-led change) programme. Individuals with a terminal illness will be invited to join an online collaborative group, to identify a specific issue they wish to address and to lead the change they wish to see. The PATCH group will be supported by a facilitator and a team of volunteers, whose roles will include supporting participants in planning and executing their change strategy. This article presents the conceptual underpinning for the PATCH programme, offering a tentative theory of the relationship between identity, moral purpose, agency, illness and the leadership of change for those living with a life-limiting illness. Challenging stereotypical views of palliative care patients, it explores a new community and asset-based approach to end-of-life care which supports individuals at the end of life in developing a positive self-view.
    Original languageEnglish
    Number of pages11
    JournalProgress in Palliative Care
    Publication statusE-pub ahead of print - 17 Aug 2021


    • Agency
    • Change
    • Identity
    • Leadership
    • Moral purpose
    • Palliative care


    Dive into the research topics of 'From artmaking to changemaking: Conceptualizing the PATCH (Palliative care patient-led change) programme'. Together they form a unique fingerprint.

    Cite this