Cancer Contribution is an association gathering actors from the oncological world (patients, doctors, politcal delegates and associations, citizens); its aim is to propose pathways of reflection and solutions to improve healthcare system. TemA Cancer (Témoigner pour Améliorer la prise en charge du Cancer) is a study realized in 2015, with the purpose of improving the taking charge of oncological patients. We host the interview to Silvia Rossi, researcher at the University of Paris Ouest – Nanterre, our guest to the Master in Applied Narrative Medicine.
Q. Which were TemA Cancer project’s aims?
SR. The project was born from an observation: social and territorial inequalities are still sensible and visible in oncological patients’ care pathway. How to reduce these inequalities and, in general, to improve the care pathway? To answer these questions, we started from the direct experience of patients and their familiars. TemA Cancer’s results were directly integrate in the strategical plan of Agence Régionale de Santé Ile-de-France, that has as a priority the reduction of inequalities in cancer caring.
Q. Which were the collecting methods?
SR. Through the Cancer Contribution site we invited patients and familiars to share their narratives. We suggested a track and proposed some questions, but the contribution was left free: in this way, the “experts for experience” spoke; everyone could narrate the most important moments, highlight critical situations, but also share reflections and propose improvements.
Q. Which criticalities emerge from collected narratives?
SR. Several elements were analyzed, depending on care pathway’s phases; for example, before arriving at diagnosis, several narratives underlined an important diagnostic wandering, especially as for younger patients. During treatments, instead, emerged the necesssity of a better cohordination between the acts done in hospital and those done at home; another point emerging from narratives, concerns supporting in the disease: it could be psychological support for patients or familiars, or support cares, from kinesitherapy to aesthetic oncology, but the offering of these support forms is not always adequate, or it is not communicated. Another fundamental element is the disease’s economic impact: during treatments, the patients risks to pay in advance or more of the costs refund by the Healthcare System. In the phases following treatments, instead, difficulties regarding work are emphasized: finding or starting it again, asking for a part-time job, tell or not about the disease… It is an interesting subject: there is a life beyond cancer, but which is the ex patient’s place? Patients ask the end of the care path to be better defined, and not to be “abandoned” after treatments: is one of the reflection that deserves more attention.
Q. Which are good practices to enhance?
SR. Doctor-patient communication is at the first place: often the patient shows a desire to be informed, to be the actor of his/her care pathway, and not “passive”. When the communication is good quality, there is an explicit recognition: often the definition of a “good care pathway” corresponds to the fact of feeling “listened, protected”.
Q. Through which metaphors cancer and care pathway are narrated?
SR. Several steps in the care pathway recall several metaphors; in cancer narrative, the announcement is a fundamental moment, corresponding to a catastrophe: it is a “tsunami”, the sky “falling on the head”. During treatments, instead, patients point out their sensation of depersonalization: they feel like a “number”, a “study object”, otherwise they get the impression to be treated like children and be dependent to doctors’ information, as a student that must shut up and obey: consideration that takes us back to the importance of a good communication with doctors. Then, naturally, there is the cliché-metaphor of war, very frequent: among others, familiars recall it, narrating the “difficult battle” against the “enemy”, and the “heroic fight”. Also patients use this language, but other metaphors emerge: a “pathway”, a “journey”, an “adventure” in a foreing land – their narrative is then a saga. A language corresponding to the necessity of not limiting the “event cancer” to a close parenthesis, to an ended battle, but of including it in a life course.