Exploring cancer patient experiences through art: what can visual methodologies offer user-centred health services (re)design?
Sofia Vougioukalou (Cardiff University)
Paper short abstract:
This paper argues that art produced by health service users is a form of representational knowledge that can engage health service professionals in service redesign in a much more effective way than propositional knowledge about patient needs.
Paper long abstract:
Re-designing health services around patients' and relatives' lived experiences is a practice of increasing popularity. However, the use of arts-based enquiries has been limited. This paper will explore the potential of creative expression to inform health service (re)design and contribute to innovative service improvement that meets patients needs. Materials are drawn from a qualitative research project that looked into the experiences of cancer patients who live on their own. We identified key issues for this little-known group of cancer survivors through an innovative methodology that complemented interviews with an art-based enquiry. Twenty cancer patients (in treatment, in remission or palliative) were interviewed on their experiences dealing with the physical, emotional and financial impact of cancer while living alone and ten participants took part in the arts-based enquiry. Participants produced poems, photographs and drawings that either directly reflected or were metaphors of the effect of cancer in their lives. This process allowed them to be the authors of the representations of their experience and choose which facets they'd like to communicate and in what ways. The richness of the representations of these experiences through creative means offered a unique contribution to the user-centred redesign of cancer services. Using Heron and Reason's (2008) model of extending epistemology through co-operative enquiry, this paper argues that art produced by patients is a form of representational knowledge that can engage health service professionals in service redesign in a much more effective way than propositional knowledge about patient needs.
Design Anthropology: Uniting experience and imagination in the midst of social and material transformation