Università degli Studi di Modena e Reggio Emilia
Corso di laurea in infermieristica - Sede di Modena
| Thesis Title | The role of the nurse in territorial health and care contexts related to rare diseases: adrenomyeloneuropathy. The testimony of the patient trainer |
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| Name | Pilon Silvia |
| Supervisor(s) | Nava Letizia, Laffi Patrizia |
| Academic Year | 2017/18 |
| Thesis type | Research thesis |
Abstract
To face new challenges facing people with rare diseases, serve appropriate lines of communication, information and support. Much more clinical professionals, patients understand the reality of their condition, the impact of the disease on their lives, the treatment and the difficulties that the health organization has in setting out paths, recognizing care and assistance, where the disease is not recognized. In fact, these people can guide the organizational strategies of health services, in the perspective of patient engagement. The aim of this study is to emphasize the importance of empowerment, patient engagement in patients suffering from a rare disease, such as adrenomyeloneuropathy. Another purpose is the description of the figure of the trainer patient who transforms his experience as negative event disease, to a training opportunity and information to other users, encouraging peer education. It describes the reality of people who become from passive figures, who suffer congenital disease, to an active ones, making themselves architects of their treatment process. Some of the sources have been collected through the testimony of four trainers patients, who are part of the “Tandem” association, through qualitative method of analysis of the focus group.