In Search of Stories: A research project on narrative meaning-making in patients with advanced incurable cancer

When diagnosed with incurable cancer your life is suddenly turned upside down. This experience may evolve into a search for new (existential) meaning if life, and/or that patients are forced to find new (ultimate) goals in life. But how do you do this? Who or what helps you in this search for new meaning in life? How to integrate this major life event into your evolving life-story? The research project In Search of Stories aims to investigate how patients with a form of incurable cancer can be supported in their meaning making upon diagnosis. More specifically, the aim is to investigate how both spiritual counselors and professional artists can assist patients in the process of existential/spiritual meaning making and how their role could be (better) integrated into palliative oncological care.

Project team

• Project coordinator and Principal Investigator: prof.dr. Hanneke van Laarhoven (Amsterdam UMC)
• Principal Investigators: dr. Michael Scherer-Rath (RUN); dr. Esther Helmich (Amsta)
• PhD Candidates: Yvonne Weeseman, MA, MSc (Amsterdam UMC); dr. Zoë Bood (Amsterdam UMC); Emily Evans, MA (Amsterdam UMC)
• PostDoc researcher: dr. Niels van Poecke (Amsterdam UMC)
• Other project members: drs. Nirav Christophe (HKU), drs. Henny Dörr (HKU); prof.dr. Mirjam Sprangers (Amsterdam UMC)

Research aim

The aim of this research is to design an intervention that assists advanced cancer patients in their search for spiritual/existential meaning in life post diagnosis.

Why is this research project relevant?

This research project is relevant as currently there are few intervention studies available for this particular group of advanced cancer patients on the subject of spiritual caregiving. The diagnosis non-curative cancer conjures up many existential questions and experiences. The search for new possibilities to deal with the diagnosis and to reconfigure the life-story, is a quest for existential/spiritual meaning, for which assistance is highly relevant and needed.

But how and what should such assistance be? One of the assumptions underlying this research project, is that meaning making unfolds in narrative practice. To rework major life events into a story with some sense of coherence and meaning, patients need to be assisted in rewriting their life-story. Art and culture may potentially have a major role in the process of making meaning after diagnosis, as rewriting the life-story unfolds in and through social interaction and through interaction with meaning making resources including art and culture. Elements of fictional stories in literature, poetry or (popular) music may be supportive to patients’ meaning making journeys. But whether – and is so, how – art and culture may assist patients in the process of narrative meaning making, is still an empirical question that will be addressed in this research project. 

Research design

In Search of Stories is a collaboration between oncologists, (health) researchers, spiritual caregivers, and professional artists. The intervention study consists of several elements: First, questionnaires are used to gain insight into how patients have experienced and dealt with major life events or experiences of contingency. Second, patients are invited to visualize their illness experiences through the drawing of a Rich Picture. Both the questionnaire and the Rich Picture serve as input for a first conversation in the hospital with a spiritual counsellor. Accordingly, patients are invited to select a story from a collection of stories that all revolve around a protagonist experiencing contingency in life: the experience that some-thing befalls him/her that could have been otherwise. Some of the stories specifically deal with cancer, others are more broadly resonating with the notion of contingency, and range from Franz Kafka’s ‘The Metamorphosis’ to Jonah/Yunus and the Whale. It is anticipated that elements within the story, particularly those dealing with how protagonists are confronted and deal with the experience of contingency in life, might resonate with and potentially also help patients reflecting about their own contingency experiences. Also, the reading experiences; i.e., how the patient connects with the story and how the reading of the story might facilitate a reflection upon the own life-story, are discussed with a spiritual counsellor in a follow-up conversation. Towards the end of this conversation, patients are asked about personal preferences regarding art and culture in general and what their wishes and needs would be in collaborating with a professional artist. The final element of the intervention study, hence, is a co-creation process between the patient and a professional artist, during which the patient is further assisted in exploring possibilities to reconfigure the life-story. On the co-creation process and the final end product (an art work), the patient reflects during a third meeting with a spiritual counsellor, after which the patient draws a second Rich Picture. Also the second Rich Picture is discussed with a spiritual counsellor during a fourth meeting. Finally, the patient evaluates his/her participation in the project with one of the researchers involved in the project.

Expected outcomes

At the end of the project, it will be evaluated to if an intervention, based on our narrative and arts-based approach, is feasible and to what extent participating in the intervention is perceived as feasible and relevant by participating patients. On the basis of the project’s final results, it will be evaluated whether – and if so, how – the current study can be extended into further larger studies.

In Seach of Stories is a collaboration between Amsterdam UMC, Radboud University Nijmegen, HKU University of the Arts Utrecht, Amsta Healthcare Organization, Spaarne Gasthuis and Maastricht UMC; and is financially supported by KWF Dutch Cancer Society.