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The TRUST Project at the Italian Society of Cardiology Congress

Silvia Napolitano, Healthcare Area of ISTUD Foundation research collaborator, has recently had a speech to present a poster on potentials of the narrative research applied to the cardiology field and to heart failure research, at the last Congress of Italian Society of Cardiology (Società Italiana di Cardiologia – SIC), that was held in Rome at the 14-17 of December. The poster of the TRUST project, sponsored by Novartis, is entitled “TRUST project: Narrative Medicine to listen to the voice of patients, caregiver and physicians on heart failure in Italy” and is reported following:

Introduction: Heart failure (HF) is a progressive chronic disease that needs lifelong management. Dyspnea, fatigue, tiredness, ankle swelling are the main symptoms affecting patients’ everyday routine and quality of life. Narrative medicine is an interdisciplinary methodology based on the collection of illness narratives directly written by patients, caregivers, and healthcare practitioners [1]. This approach allows the accommodation of both patients’ and physicians’ cultural construction, including emotions and values on the illness and the pathways of care.

Objective: The aim of the TRUST (The Roadmap Using Story Telling) project is to integrate patients’, caregivers’, and physicians’ point of views on the pathway of care and on how living with heart failure affects the everyday life through the use of Narrative Medicine.

Methods: From June to November 2018, patients, caregivers and HF specialists have narrated independently and anonymously about their experiences with heart failure by writing, on a dedicated online platform, illness plots and parallel charts, two majors narrative medicine tools [2]. These are specifically structured to help respectively patients and their families, and HF specialists to overcome the writer block, and designed to minimally influence their telling [3]. The Grounded Theory methodology will be used to analyze the narratives with the support of a software (NVivo 10).

Results: Up to date, the online platform for collecting narratives has been inactivated, and the analysis phase will end in January. 256 narratives were collected: 84 from patients, 63 from caregivers, and 109 from HF specialists. 21 Italian HF specialists have actively written of their own experiences and informed patients and caregivers about the possibility of freely and anonymously participate to the project. Among participating professionals,  76% are cardiologists, 19% internal medicine, and 5%geriatrists. (38% from the south or islands, 33% from the center, and 29% from the north of Italy). Patients  were often males (73%) with the average age of 69, while caregivers were mainly females (85%), about 55 years old on average, and mainly spouses or  sons/daughters (34% and 35% respectively). Patients described by HF specialists were mainly males (78%) aged 65 years  on average, usually accompanied by their caregiver (64%). Preliminary results are available and highlight new qualitative insights on pathway of care. First interesting result is the participation itself; caregivers, indeed, participated more than expected and their narratives were particularly long and rich in details. Furthermore preliminary analysis show that caregivers have felt fear and apprehension for the patients’ health condition more than the affected people themselves. On the other hand, the majority of patients and caregivers who decided to participate to the project described the relationships with their physicians as good and trustworthy.

Conclusions: For the very first time, a Narrative Medicine project, combining the three major point of view, patients, caregivers, and physicians, is applied to the field of cardiology, and in particular of heart failure. This innovative approach could be particularly informative, since it integrates information on symptoms and drugs, with feelings, thoughts, and action of the entire pathway of illness of affected people, from the first signs of disease to the diagnosis and its communication and management.

Bibliography

  1. Greenahlgh T. Narrative based medicine: narrative based medicine in an evidence based world. BMJ 1999; 318:323-325
  2. Charon R. Narrative Medicine: Honoring the stories of illness. Oxford University Press, NY, USA (2006)
  3. Greenhalgh T, Hurwitz B. Why study narrative? In: Narrative based medicine: dialogue and disclosure in clinical practise. BMJ Publishing Group, London, UK, (1998)
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2 thoughts on “The TRUST Project at the Italian Society of Cardiology Congress

  1. Has the researcher looked at the discours, the words, themes and tone of voice of the narrator? What patterns are visible and how can that be used to co-created a story of change? Is there a focus on the effect of narrative intervention on (the development of chronic) disease? Are you aware of this study: Nguyen et.al. (2017) Culturally adaptive Storytelling Intervention versus Intervention to Improve Hypertension Control in Vietnam: a cluster randomized controlled feasibility trial. Pilot and Feasibility Studies 3:22. We cab change health behaviour through storytelling and actually save lives, advocate medicine use and vaccination. I work from the notion that: stories kill, stories change and stories cure. So not just listen to stories but actively use them to help patients, doctors and social networks, deal with NCD’s. See my work for i.e. MSF (Doctors without Borders) at this link: https://youtu.be/Rr4kp5gkjaI. This could seriously enhance your TRUST project, I will be glad to share information and research.

    • Dear doctor Suzanne Tesselaar,

      it’s a pleasure for us reading you are interested in this Narrative Medicine project named TRUST (https://www.medicinanarrativa.eu/trust).
      Firstly, I would really like to thank you for your comment, that we found very interesting.
      About your questions, I would like to specify you that, since the design of the project all the collected narratives were sent us through an online platform as written text. Consequently, the analysis performed was carried out on written narratives in terms of language used, common issues described, metaphors, style of writing…
      Further, we agree with you on the importance to use the collected stories to help, not only patients nor caregivers, but also the professionals and the stakeholders involved in the decision making for the Italian Healthcare System and the scientific community.

      Thanks a lot,
      Best Regards,

      Silvia Napolitano

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