HOPE, HERO – Beyond the Haemophilia Pathology: Fondazione Paracelso, in collaboration with FedEmo, launches a new project in Italy addressed at families with haemophiliac children 0 to 12 years old. The objective is to support families during the children's growth phase through groups in which parents share and compare their stories, coordinated and guided by a leader, in order to encourage the exchange of experiences and feelings, in the conviction that we are not only carriers of needs and problems, but persons able to perform actions to enhance our own well-being and that of others.

This project is inspired by the analysis of the needs that emerged from the HERO (Haemophilia Experiences Results and Opportunities) international study, the broadest fact-finding survey of the psycho-social aspects of haemophilia conducted up to this time.

The basic principle directing the project may be expressed by the concept of empowerment, in the sense of increasing the possibility for individual persons to control their lives through the discovery of the resources that they possess and the opportunities for using them in everyday life.

This is certainly one of the objectives of the group meetings. In fact individual empowerment is single persons' capacity to exercise control over their lives. Community empowerment involves individuals acting collectively to succeed in exerting greater influence and control over the decisive factors of the health and quality of life of their communities.

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The project, therefore, may be seen as facilitating empowerment processes in the two aspects which, in this specific case, may be summarised as follows:

  • recover confidence in "experiential knowledge", not taken as arrogance but as a merger/exchange with technical and specialist knowledge;
  • believe that the experience of illness and the physical and psychic pain that comes with it generates knowledge and may lead to social commitment which cuts the chain of delegated action;
  • see one's own experience in the value of diversity and exchange, which certainly does not allow a definition of capability or incapability, but a wider vision that emerges from one's own personal history and from the creative strategies that one can adopt.

Leaders will manage these groups, therefore, paying special care to encourage participants to communicate with an abundance of questions, not only for others but for themselves, to keep track of both concrete facts and actions but also of emotions, to store the answers in the group's acquired knowledge and to foster the re-definition of problems before looking for possible solutions to them.

The leaders' function is a very delicate one, because they will have to follow the process that the group itself creates according to the dynamics of the relations among the participants and make the group's memory a tool enabling these participants to recognise their stories as members of that specific group at the appropriate time and in the appropriate manner. In carrying the group with them, the leaders will take care to manage the relational mechanisms without weakening the participants and without "transmitting empowerment", because this must not come from a person external to the group but from the group itself, if well led.

What unites the group is certainly having a sick child (the initial justification for the meetings), but during the process it is important to become aware that the members of the group are not only bearers of needs and problems, but persons able to "perform actions for their own well-being and for that of others": namely, persons that discover they can teach and learn.

The project is operating in 6 cities: Milano, Firenze, Roma, Napoli, Reggio Calabria, Catania. In each of them, the families, about 40 throughout the country, meet on average once every two months.



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