Intervista a Francesca Testoni. Responsabile assistenza. A.G.E.O.P. RICERCA ONLUS

Elisabetta Modena: What is AGEOP and how was it founded?

Francesca Testoni: AGEOP RICERCA ONLUS, Associazione Genitori Ematologia Oncologia Pediatrica, has been welcoming and assisting children with cancer and their families for over thirty years, in order to improve their living conditions and build a future without illness.
It is based in the Lalla Seràgnoli Paediatric Haematology and Oncology Department of the Sant’Orsola Malpighi Polyclinic in Bologna and contributes to the growth of this centre of excellence.
It carries out many projects guided by a single objective: that care should not end with therapy, but should take on the deeper meaning of “taking care”, at every moment.

AGEOP means:

Accoglienza [Welcome] – 4 free accommodation facilities for children and families, to reduce hospitalisation times and guarantee the constant presence of parents, giving them the peace of mind, including financial peace of mind, to face the months of therapy away from home.

Genitori accompagnati giorno dopo giorno [Parents accompanied day after day] with constant specialist, economic, logistical and human support.

Erogazione contratti per la Ricerca [Provision of research contracts] for 2 doctors and 5 researchers at the Research and Diagnostics Laboratory of the Paediatric Haematology and Oncology Department. Purchase of state-of-the-art scientific equipment.

Organizzazione di progetti [Organisation of projects] for therapy, mediation and creative workshops for young patients and families. Training of qualified volunteers.

Psicooncologia [Psycho-oncology]. Provision of contracts for psychologists, to support children and families during the difficult experience of cancer.

The History:

AGEOP was founded in 1982 by a group of parents, encouraged by the then Director of the Paediatric Clinic, Prof. Guido Paolucci, who had understood that doctors alone could not defeat cancer.
Together they sought a concrete way to stand beside their sick children and all those who would find themselves living through the same difficult and painful situation.
Thus began the journey of AGEOP. The aim was to create an active, welcoming and supportive network that could support the pain and profound difficulties that a child’s cancer brings with it.
In 1985, the association “Ricerca sui tumori e leucemie del bambino” joined AGEOP. Together they committed themselves to supporting young patients and their families and supporting scientific research. Their activity became consolidated in 1989, when AGEOP RICERCA was created from their union.
In 1993, AGEOP, already recognised as a voluntary organisation, obtained the status of an ONLUS by law.
When AGEOP was founded, there were not even camp beds on which parents could sleep beside their hospitalised children. That was its first achievement. Then came the first scholarships for oncologists in the USA, the first sterile rooms, the school in the department, psycho-oncological assistance, free accommodation facilities, and finally the renovation of the fourth floor and the construction of the fifth floor of the new Paediatric Haematology and Oncology Department, which today represents a centre of excellence in Italy and abroad.

E.M.: In 2004—when the department did not yet exist in the form we see today on the fourth and fifth floors of Pavilion 13 of the Sant’Orsola–Malpighi Polyclinic in Bologna—the project now catalogued on MoRE was developed by Roberto Daolio, involving seven internationally renowned artists. What were the cultural and healthcare/assistance premises underlying a commission of this kind?

F.T.: AGEOP had been dreaming of the new department for years. It wanted to conceive a beautiful department for children, parents and staff, where art and nature could break the monotony and greyness of the hospital environment.

E.M.: Since then, the plans for the department have been modified—the department has taken on a different structural and architectural form—as have the people involved at management level at the time. What were the reasons that made it impossible to realise the project?

F.T.: Mainly health and hygiene reasons. Restrictions on the use of materials, limitations on the use of outdoor spaces, and restrictions on staff access.
Furthermore, some projects had been conceived for specific spaces that were subsequently completely altered in the final construction.

E.M.: If we were to think about realising the projects of the seven artists involved today, what problems might we encounter? Would it be possible to realise them if funding were found?

F.T.: It would be practically impossible to realise almost all of the projects. Only Emilio Fantin’s project could be taken up again and potentially lead to the creation of training courses or workshops.

E.M.: Do you think that this rigidity of today’s regulations is motivated only by health and hygiene reasons or, as an operator in the field, do you also see a cultural change taking place in this regard?

F.T.: Hospital regulations have certainly become stricter, and great importance is given to infection prophylaxis. It is equally certain that a cultural change is taking place, not only in healthcare but throughout society. Technical and scientific culture has prevailed over humanitarian and artistic culture.

E.M.: What is the department like today? How are the children’s and parents’ rooms furnished?

F.T.: The rooms are furnished in an essential manner. Each room has a bed for the young patient, a bedside table, a small table with a chair. The parent has an anatomical armchair and a piece of furniture with a pull-out bed for the night.

E.M.: What projects would it be possible and desirable to realise today for the children in the department?

F.T.: Projects that promote liberation from suffering and anxiety through artistic expression, or that train volunteers and staff in relational approaches with children through artistic techniques and materials.

E.M.: What value can art applied to a condition such as this have, in your opinion? What results would you consider in order to determine the success of an artistic project in the department?

F.T.: Psychological suffering and physical pain are unavoidable for the child, but they can be expressed, and therefore externalised and overcome. Experiencing beauty as relief and nourishment for the human soul, and creative processes as a possibility for expressing emotions and feelings, are the resources that music, painting and experimentation with artistic languages in general can offer, as they too are fundamental forms of knowledge. Their results, among other things, can be assessed in children through their emotional response.

E.M.: What do you hope for in this regard for the future?

F.T.: I hope for greater attention to care understood as care for the person, as respect for the dignity and integrity of the human being in all its complexity. That children may be recognised as having the right to a relationship with art and culture as competent and sensitive subjects, and not merely as passive consumers; recognition of quality of life as well as life itself. That culture and art are the essence of life and of its quality, also and above all for children.