As a unique collaboration between Dr Jac Saorsa, artist and writer, Dr Annmarie Nelson, researcher, and Simon, clinician and subject*, this project is designed to articulate through word and image the experiences of a palliative care clinician, who was once a cancer patient. Through a specific focus on an individual experience we hope to articulate a more general understanding of the subjective, existential experience of cancer.
The theoretical framework for the study derives from phenomenological interpretation, which aims to understand how people construct meaning or make sense of their world. The project uses a multiple hermeneutic arising from the interpretations of the artist, the researcher, and the clinician/patient as each draws on their individual experience from their multiple and intersecting roles within the study, all of which use forms of dialogue in order to capture the multiple perspectives and the lived and learned experiences of the subject’s cancer journey.
The study will be carried out in Cardiff and is supported by the Marie Curie Palliative Care Research Centre and The Broadway Drawing School.
*Simon is a practicing palliative care clinician, who was diagnosed with Hodgkins Lymphoma 18 years ago. He is 40+ years old and married.
Method and outputs
The artist will create three separate yet interconnected outputs:
1 – a body of preparatory work comprising of sketches and drawings that will be made both directly, during the interviews between researcher and subject, and from transcripts of those interviews. These drawings and sketches will be worked up in the studio into a series of drawings for exhibit, along with the final painting (see 3), that will reflect the progression of the narrative throughout the project, and the response of the artist to what she sees and hears. Further influences on the drawings will be derived from the theoretical and philosophical background of the project, which will be detailed, along with selected imagery, on the project website (see 2).
2 – a dedicated website for the project as a whole
3 – a portrait in oil on canvas of the subject. This will be carried out through a series of ‘sittings’ at the artist’s studio. The conversation between the artist and subject during these sittings will be recorded and will form part of the research ‘data’. The intention behind making the painting is that within the context of the collaboration as a whole the resulting image will portray not only the subject himself, but will also articulate, through engaging the viewer in a profoundly subjective way, the ‘experience’ of cancer beyond the individual.
2. Phenomenology and literature
The researcher will undertake a series of interviews with the subject (up to four interviews of two hours each) with a focus on key moments through the course of the cancer journey, and beyond, to reflections about his clinical practice.
The interviews will identify ‘trigger timepoints’ through the trajectory from diagnosis, from his dual perspectives as doctor and patient. For example, they will focus on diagnosis, treatment decision-making, relationships, coping mechanisms, symptom burden, sense of self and survivorship/treatment failure.
In addition to the research literature around these topics, extracts from literary fiction will be used as a resource to support or challenge the results from the interviews. This multimodal approach aims to locate and reflect the singular voice of the participant in the wider corpus of research and literature.
The interviews will be audio recorded and transcribed in full and verbatim. With the subject’s consent, extracts will be used in the study report and future publications.
All transcripts will be systematically analysed in several stages:
- Preliminary reading: The transcript of the first case is read line-by-line and annotated with initial comments
- Early analysis: Initial comments are grouped into themes
- Higher level abstraction: Connections between themes are developed until an organised master list and thematic account of the case is achieved
- Subsequent transcripts: New themes are tested against the previous cases as non-recurring themes are tested against following cases. Connections across cases are noted to identify a set of super-ordinate themes for the group.
A coding framework for emergent themes will be developed, validated and compared. Ten percent of the data will be double coded to ensure rigour. The anonymised data will be represented by selected extracts in a narrative format with a thematic structure. The results will be discussed with data extracts used in support of claims made. Ten percent or more of the data will be co-coded by an independent researcher to validate the results. Subject will be given copies of the transcripts to approve as a true reflection of his intended comments.
Intended publications resulting from the study will include a book, academic papers, a public art exhibition with annotated catalogue, and a dedicated website.