Researchers: Maya Harji, Joodi Mourhli, Ben Daley, P John Clarkson, Ben Bowers
Funders: Wellcome Trust
Start date: 01/10/2025
End date: 31/12/2026
Project summary:
Injectable anticipatory, or ‘just in case’, medications are vital in managing end-of-life symptoms in community care settings. Those who use them often know about their challenges but can make assumptions about the needs, preferences and abilities of other involved stakeholders. Personas and scenarios are a well-used tool in system design engineering to capture the range of users' abilities, needs, and priorities in real-life complex situations. They drive human-centred design, and can be useful instruments in promoting inclusive end-of-life care research and clinical practice to highlight patients, families, and healthcare professionals’ range of abilities and priorities.
Project aims:
This project offers a tool to emulate the experiences, abilities, and priorities of patients, family carers, and healthcare professionals and stimulate discussions in research focus groups and clinical teams about how we could design systems to provide better end-of-life symptom management.
We outline a robust method for generating person-centred and user-driven patient, family carer, and healthcare professional personas and scenarios, drawing on primary end-of-life research data.
Project impact:
We created ten visual and textual personas along with five scenarios grounded in primary end-of-life research data, capturing common and diverse attributes and needs in the population of interest, for use in end-of-life care research and redesigning clinical care delivery. They will be used in focus groups as prompts to discuss and re-imagine better end-of-life anticipatory medication use.
This is the first study of its kind in palliative care, and paves the way for improved, user-driven research and design.
Further information, references, publications and presentations:
Bowers B, Pollock K, Barclay S. Simultaneously reassuring and unsettling: a longitudinal qualitative study of community anticipatory medication prescribing for older patients. Age and Ageing 2022. 51(12): afac293