Abstract
ABSTRACT
Introduction
‘Frailty’ as a concept is being increasingly integrated into healthcare, but the language around frailty is contentious and potentially stigmatising to patients. It is therefore important to understand how patients’ lived experiences relate to the concept of frailty. We conducted 3 creative patient and public involvement (PPI) workshops to support the study, ‘Exploring how the Electronic Frailty Index 2 (eFI2) can be best utilised in clinical practice.’ Our aims for these workshops were to 1) improve our eFI2 project topic guide and data analysis 2) explore whether creative PPI can support engagement with contentious concepts like frailty, and 3) to understand how frailty can be communicated to patients.
Methods
Creative PPI offers a means of addressing the shortcomings and challenges of PPI, including tokenism, accessibility, and inclusivity, by allowing patients and members of the public to contribute in different, individual, and non‐discursive ways. We used group blackout poetry writing and quilt‐making as creative PPI approaches to understand how patients relate to ‘frailty.’ We collaborated with PPI networks affiliated with the NIHR Applied Research Collaborations (ARCs) and a South Asian community organisation to recruit participants and used public collaborators to co‐design and ‐deliver activities. We used qualitative thematic reflections to share findings from these activities.
Results
Twenty‐two people attended three creative PPI workshops (two blackout poetry activities and one quilt‐making activity). These activities provided three types of findings: 1) the impacts of the creative PPI activities on the eFI2 research process, 2) three thematic reflections, ‘difficulties with ‘frailty’ as a term and concept,’ ‘personalising ‘frailty’ in patient communications,’ and ‘time pressures and dysfunction in healthcare services;’ and 3) the creative outputs (text of two poems and an image of the quilt).
Conclusion
Research and healthcare professionals should work towards discussing frailty with patients in terms and concepts that reflect their experiences and understanding and consider their overall health. Future research and PPI should focus on diverse cultural perspectives on frailty.