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Riding a roller coaster: narrative typologies of patients with neuroendocrine tumors

Authors Miconi A, De Nuzzo D, Vatne S, Pierontognetti P

Received 18 June 2015

Accepted for publication 2 November 2015

Published 15 December 2015 Volume 2015:8 Pages 535—545

DOI https://doi.org/10.2147/JMDH.S90744

Checked for plagiarism Yes

Review by Single-blind

Peer reviewers approved by Dr Mahima Ashok

Peer reviewer comments 2

Editor who approved publication: Dr Scott Fraser

Alessia Miconi,1 Daniele De Nuzzo,1 Solfrid Vatne,2 Paola Pierantognetti1

1Faculty of Medicine and Psychology, Sapienza Università di Roma, Rome, Italy; 2Molde University College, Molde, Norway

Background and objective: Illness stories have attracted growing attention in health care research in the context of learning from looking at the world through the patients' eyes. No narrative studies were found about the patients with neuroendocrine tumors (NETs); a rare illness including tumors usually starting in hormone-producing cells. The aim of this article was to develop an extended understanding of these patients' experiences and struggles, as well as their solutions to a common problem.
Methods: The data source was 21 letters written by the patients with NETs treated at an ambulatory treatment center at a large urban hospital in Italy. The letters were analyzed using the Arthur Frank's narrative method. We paid particular attention to statements of self-experience, which is crucial to get the character of the story.
Results: We identified four different typologies: “Not illness stories”, “Living in imbalance”, “Living a new life in balance”, and “Living a normal life”. The main characteristics of these four groups could be linked to Frank's typologies. However, the patients with this periodically changing disease were continuously in the process of attaining balance in life, and they might move between these various typologies.
Conclusion: The NETs are incurable illnesses that challenged the peoples to attaining a new balance in life. We will highlight stories focusing on the patients' imbalance and chaos because they illuminated the patients' concrete suffering, which might provide clinicians with specific information about the patients' emotional, physical, and spiritual state. Through learning from the stories of the patients attaining new balance, it seems possible to move forward to acceptance and to develop a model for a new way of living. However, we are skeptical about labeling these stories as a model for clinical practice because they might contribute to individualistic and heroic prescriptions for life that are impossible for others to achieve.

Keywords: living in imbalance, coping and adaption, health care, life-threatening illness, neuroendocrine tumors, narrative inquiry

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