Illuminating artists' engagement and professional practices in palliative and end-of-life care: a mixed methods study

Abstract

Background
Internationally, artists work in palliative and end-of-life care in a wide range of settings, however there is a dearth of research regarding artists’ engagement and professional practices including the perceptions of key professionals who work with them. Consequently, there is value in further conceptualising and examining artists’ professional practices in palliative and end-of-life care.
Aim
In order to address a gap in the literature, the aim of this mixed methods study was to illuminate artists’ engagement and professional practices in palliative and end-of-life care through triangulation of artists, health professionals, and programme coordinators’ professional perceptions.
Methods
Engaging sequential explanatory mixed methods, an integrative review of the literature systematically synthesised evidence on artists practicing in palliative care to identify key knowledge gaps. An online, cross-sectional survey with artists, health professionals, and arts programme coordinators in palliative care examined an international range and scope of artists’ practices. Semi-structured, in-depth interviews with artists, health professionals, and programme coordinators garnered deeper understanding of artists’ engagement in palliative care.
Findings
By engaging key professionals across disciplines, multiple points of view were captured to enrich understanding of a complex and understudied phenomenon. Key findings revealed patterns in artists’ engagement and professional practices with individuals with palliative and end-of-life care needs in four key areas: 1) Enabling living until dying by accessing inherent creativity and an undiscovered creative potential therein; 2) Dyadic and therefore dynamic nature of artists’ engagement in palliative care is associated with benefits and risks of practice for artists and participants alike; 3) Artists’ tools of engagement such as aesthetic mechanisms take on distinct qualities and implications in the palliative care context such as time, tangibility, imagination, and sensory and embodied elements; and 4) Scope and ethics of practice are underpinned by artists’ aims, skills, and structures. A set of indicators, or ‘vital signs’, were generated from integrated quantitative and qualitative findings, which offered indicators of shared vitality in artists’ professional practices in palliative or end-of-life care for consideration by individual artists and arts programmes.
Conclusions
This study makes a significant contribution to knowledge by illuminating shared values, aims, skills, and structures common amongst artists working in palliative care despite a dearth of literature documenting the nature, range, or scope of their work and working conditions. Further, this is the first effort known to this author to reach both internationally and across professional roles to describe key professional collaborators’ understandings of artists’ professional practices working in palliative care. Therefore, this study presents a foundation for further conceptualisation, examination, and illumination of artists’ professional practices to advance safe, meaningful, and effective arts engagement through the health, vitality, and sustainability of artists and arts programmes alike, which may serve to increase the availability and uptake of the arts in palliative care.

Date of Award	Mar 2024
Original language	English
Supervisor	Lisa Fitzpatrick (Supervisor) & Sonja McIlfatrick (Supervisor)