Untellable tales and uncertain futures: the unfolding narratives of young adults with cancer

ABSTRACT

In this paper, we examine the use of creative methods for understanding the experience of young adults aged between 16 and 30 years over a year following a cancer diagnosis. Exploring the renegotiation of identity, the narrative, longitudinal research design of the study demonstrated the unfolding process of the narrative work between participants and researcher. We used a combination of visual, spoken and reflexive psychosocial approaches to understand emergent narratives, many of which do not always find symbolisation in language. Our methodological approach focused on the difficult and sometimes ‘unspeakable’ nature of the young adults’ narratives, demonstrating the importance of different modes of communication in articulating complicated relations with uncertain futures. In this respect the links between narrative, social action and the imagining of possible futures are precarious. In this paper, we explore how untellable issues were explored, and the challenges of doing so.

KEY WORDS:

• Narrative
• longitudinal
• visual
• psychosocial
• cancer

Acknowledgments

We would like to thank the young adults who participated in this study; Professor Andrew Cooper at the Tavistock Clinic, for providing psychosocial insight and allowing the researcher to participate in a Psychosocial Research Group; and the Florence Nightingale Foundation for supporting some of the financial costs of the research.

Disclosure statement

No potential conflict of interest was reported by the author.

Additional information

Notes on contributors

Susie Pearce

Susie Pearce has a background as a cancer nurse and qualitative researcher focusing on patient experience, the contexts of care, and the use of innovative methods for the development and transformation of practice and policy. Much of her work has been with teenagers and young adults with cancer; and the end of life. She is currently a clinical academic working across practice and academia in the post Associate Professor (Research) in Nursing at the University of Plymouth and Torbay and South Devon NHS Foundation Trust

Faith Gibson

Faith Gibson, is Professor of Child Health and Cancer Care at the University of Surrey and Great Ormond Street Hospital for Children NHS Foundation Trust, where she is also lead for the Centre for Outcomes and Experience Research in Children’s Health, Illness and Disability (ORCHID). She is a children’s cancer nurse; her career has included long periods in clinical practice and in education. She now leads a programme of research in the child and young person population, in cancer and other life-limiting and chronic diseases. Her research is predominantly qualitative, she has extensive experience using participatory research methods.

Jeremy Whelan

Jeremy Whelan is a Consultant Medical Oncologist at University College London Hospitals NHS Foundation Trust and Professor of Cancer Medicine at University College London. His clinical, research and policy specialism includes the care of young people with cancer.

Daniel Kelly

Daniel Kelly has held the Royal College of Nursing Chair at Cardiff University since 2011. His research interests include cancer care in adolescents, and more recently organisational culture and related factors such as leadership and patient safety. He is an executive Board member of the European Cancer Organisation and a Trustee at St Christopher’s Hospice in London. He gained international experience of nursing and healthcare in India, Canada, Australia and the US, as well as collaborating widely in Europe as President of the European Oncology Nursing Society.