Health Policy Brief: i pilastri dell’Engagement in Emofilia

Authors

  • Guendalina Graffigna Consumer, Food & Health Engagement Research Center, Department of Psychology, Università Cattolica del Sacro Cuore, Milano - Italy
  • Serena Barello Consumer, Food & Health Engagement Research Center, Department of Psychology, Università Cattolica del Sacro Cuore, Milano - Italy https://orcid.org/0000-0002-8514-2563
  • Caterina Bosio Consumer, Food & Health Engagement Research Center, Department of Psychology, Università Cattolica del Sacro Cuore, Milano - Italy
  • Chiara Biasoli AICE (Associazione Italiana Centri Emofilia) - Italy
  • Andrea Buzzi Fondazione Paracelso - Italy
  • Cristina Cassone FedEmo (Federazione delle Associazioni Emofilici) - Italy
  • Luigi Ambroso FedEmo (Federazione delle Associazioni Emofilici) - Italy
  • Patrizia Di Gregorio Servizio di Medicina Trasfusionale Aziendale, Centro Emostasi e Trombosi, Chieti - Italy
  • Lorenzo Farace FedEmo (Federazione delle Associazioni Emofilici) - Italy
  • Paola Giordano Azienda Ospedaliera Universitaria Policlinico di Bari, Centro Emofilia Pediatrico, UOC “B. Trambusti”, Bari - Italy
  • Renato Marino Azienda Ospedaliero Universitaria, Ospedale Policlinico Consorziale, UOSD Emofilia e Trombosi, Bari - Italy
  • Irene Ricca PPresidio Ospedale Infantile Regina Margherita/S. Anna, Città della Salute e della Scienza, Centro Emofilia Pediatrico, SSD Trasfusionale Materno-Infantile e Traumatologico, Torino - Italy
  • Angiola Rocino Ospedale del Mare, UOC di Ematologia, Centro Emofilia e Trombosi, Napoli - Italy

DOI:

https://doi.org/10.33393/ao.2022.2319

Keywords:

Engagement, Hemophilia, Patient, Policy Brief, Recommendations

Abstract

About 5000 people in Italy suffer from hemophilia, the most common coagulation disorder. As for other chronic diseases, even in the case of hemophilia, the engagement of the patient is essential: the patients, in fact, must be empowered and helped to become strong partners of the care team and sensitized with respect to their rights and duties for the successful achievement of the goals set by their healthcare path. Hence the initiative to start a new research-intervention project in the field of hemophilia. The study had different phases of research: a first moment inspired by the principles of narrative medicine, aimed at collecting stories and narratives of patients with hemophilia related to the experience of the disease and therapy and expectations of active involvement in the relationship with the clinician. At the same time, among hematologists and patients has been surveyed the experience of therapeutical relationship and communication, to capture the aspects in which they feel effective and the areas of improvement and unmet needs. Subsequently, a workshop dedicated to patients and hematologists was organized to foster mutual awareness between these two targets and the formation of a better communication and relational skills of clinicians.

The results of the project formed the basis for a policy brief document, aimed at disseminating recommendations to support better relationship and empathic communication between clinicians and patients.

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Graffigna, G. SB. Engagement. Un nuovo modello di partecipazione in sanità. Roma: Il Pensiero Scientifico; 2017

Published

2022-01-19

How to Cite

1.
Graffigna G, Barello S, Bosio C, Biasoli C, Buzzi A, Cassone C, Ambroso L, Di Gregorio P, Farace L, Giordano P, Marino R, Ricca I, Rocino A. Health Policy Brief: i pilastri dell’Engagement in Emofilia. abtpn [Internet]. 2022 Jan. 19 [cited 2022 May 20];9(1):3-9. Available from: https://journals.aboutscience.eu/index.php/aboutopen/article/view/2319

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Original research article