“A Anita lo que más miedo le daba era tener que entregarle a una persona de bata blanca su bracito para que le pincharan. Cada mañana muy temprano se despertaba en la habitación de aquel hospital para esperar el momento fatídico. Conocía todos los sonidos del pasillo. Los zuecos de las enfermeras retumbando contra las losetas, los carros con las comidas, los carritos de las curas y muchos más que se habían convertido en su banda sonora habitual. Ya era un acto reflejo para ella el perseguir con la mirada las manos de los que entraban ruidosa y furtivamente en su habitación y ver si estas se escondían en los bolsillos para extraer la tan temida aguja. A veces era una enfermera muy simpática la que le hablaba muy cariñosamente para calmarla mientras mecánicamente encajaba la aguja en la jeringuilla y miraba fijamente la punta hasta ver asomar una primera gota. Otras veces las palabras pre-pinchazo eran más secas, forzadas, repetitivas.

Anita siempre se prometía a si misma que no lloraría, que superaría alguna vez esa prueba, pero la mezcla explosiva de sus nervios contenidos con la fría punta dentro de su cuerpo podían doblegar su frágil voluntad.

Una mañana Anita escuchó sobresaltada los pasos de muchos zuecos que se acercaban a su habitación. Al principio reconoció a uno de los enfermeros que solían pincharla pero inmediatamente después entraron dos rostros nuevos ataviados con batas multicolor y gorros naranjas portando uno una guitarra y otra un tambor. Ella sabia que toda aquella gente estaba allí por un motivo concreto pero no acababa de entender para qué.

El chico de la guitarra le preguntó a Anita que canción le gustaría escuchar. Después de unos segundos Anita contestó:

- Una de “High School Music”

La mujer del tambor se le acercó al costado de la cama y se lo entregó.

-Toma, coge este palo y lleva tú el ritmo. Agárralo fuerte, ¿vale?

Anita asintiendo tomó el palo y comenzó a marcar insegura un ritmo. Al escuchar las primeras notas de la guitarra Anita sonrió al reconocerlas y se concentró más para acompañarlas con el tambor. Sin darse cuenta se había creado un vínculo muy especial con aquellas personas desconocidas para ella y no era consciente de que mientras tanto alguien tanteaba con el dedo la vena adecuada con su bracito libre.

Aquella vez Anita sintió el pinchazo de otra manera. En lugar de exclamar apretó el palo con rabia y se puso a golpear con todas sus fuerzas el tambor mientras que el chico de la guitarra la acompañaba acelerando el ritmo y rasgando con más rabia las cuerdas. Anita estaba expulsando su dolor y este salía despedido contra la membrana del tambor.

Cuando todo acabó durante unos segundos reinó el silencio. Todos le sonreían a Anita y ella les correspondía con gesto de satisfacción. Por primera vez era ella con ayuda de la música la que había impedido que el dolor y el miedo fueran los protagonistas.

La mujer del tambor se le acercó y le besó en la frente. Era la Dra. Joanne Loewy, directora de “The Louis Amstrong Center for Music & Medicine” de la ciudad de Nueva York. Una de las personas con más experiencia en musicoterapia. Una de las personas que más ha luchado por demostrar que el dolor, el miedo, el desánimo, la ansiedad, la soledad, la depresión, pueden curarse también sin medicinas. Pueden curarse con la medicina de los sentidos.

Entrevista a la doctora Joanne Loewy en “Periódico”

Artículo muy interesante: “Música contra el cáncer”
Un equipo del Hospital La Paz demuestra la efectividad de la música como terapia complementaria en niños con tumores y otros problemas graves.

Utani

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A number of hospitals throughout the world, among them the Sant Joan de Déu Hospital in Barcelona, have realised that, although life expectancy has increased and health-care conditions are improving, society is becoming increasingly dehumanised both inside and outside hospitals. The recent Conference on the Humanisation of Children’s Hospitals, held in Barcelona, focused on “all that it is possible to make the stay in a hospital, in this case of children, as pleasant and positive as possible”.

Thanks to medical and technological advances, today it is commonplace to build up experience on the diagnosis and treatment of illnesses, but it should be equally as important to pay the same attention to how the patient would like to be treated.

The patient:
This is the citizen, who for a short while patiently becomes a resident of a healthcare centre. Patiently, in the sense that he has to endure and overcome his illness, but also because he has to accept that he must halt his rhythm of life, and place himself in the hands of healthcare professionals. This role and this “time out” are not easy, either for the patient, or for the hospital. Together they must learn how to create the conditions necessary to make the stay more beneficial and bearable.

The Hospital:
The healthcare centre where, besides curing illnesses and complaints, hospitality to people must be promoted. Citizens-cum-patients will be cured more rapidly if, in addition to the required medical treatment, they are given more humane and emotionally positive treatment.

Citizen before patient:
Today’s citizen has become a sort of “socially digital being”. He is born in, grows up in, and lives in an information and consumer society, which induces him to live at breakneck speed. The individual now maintains relationships through the use of technology, which is now the principal form of leisure and communication. Innovations are used to keep abreast of things, but they are also a source of anxiety due precisely to having to keep up-to-date with this knowledge, which changes by the minute. Rapid access to information and consumer objects gives rise to reduced tolerance to dissatisfaction.
This inability to tolerate frustration is accompanied by what Manuel Castells calls the “negation of time”. The lack of familiarity with such essential aspects of life as pain, illness and even death - “because this is naturally the limit of our temporality as people” (“What sort of world do we live in”, Mayte Pascual) - means that the moment of admission to hospital is even more traumatic.

On the other hand, the patient arrives at the healthcare centre with much more information - perhaps not true or pertinent information, but information just the same - and this makes him now doubt the erstwhile authority of the physician. Thus a change in communication has been established.

Well aware of the changes and shortcomings of the healthcare system, the professionals that took part in this Conference proposed innovative formulas to encourage the humanisation of hospitals.

Curing in hospital via the senses
Patients can be treated with music therapy, as proposed by Phillippe Bouteloup, musician and director of the European project Music in the Hospital. That is, to collaborate in the treatment through emotions, to bring about a positive reaction in the feelings of babies crying inconsolably in incubators, helping to relieve the tension of a patient with the sound of a sweet voice and guitar. Working on musical group activities with adolescent patients, who can escape from the isolation of their illness inside a room to express themselves by playing instruments or singing in company. Or establishing sensorial contact with the deaf and dumb through acoustic instruments.

Dr Dominique Haumont of the Neo-natal Department of the St Pierre Hospital in Brussels, also spoke of their programme, NIDCAP (Newborn Development Care Program), in which special emphasis is placed on the importance of working with the feelings of newborn babies, care and treatment through caressing, body contact with the mother or nurse, the environmental conditions required to establish the optimal level of tranquillity or welfare.

Although they did not attend the conference, they have been working for a number of years in Art Therapy, where artists, psychologists and educationalists work on cases of autism, infantile depression, terminal illnesses, etc., making use of artistic expression and establishing a patient/care worker relationship which over time becomes ever closer and more beneficial, and which helps patients to overcome their illnesses thanks to positive emotional reactions.
 

Curing in hospital via hope
Angie Morales, director of the Pallapupas Hospital Clown Project, demonstrated in an initiative that human contact and intuition can be almost as valuable as the most advanced technology. The clown makes a decisive contribution to physicians being able to do their work, for example, in the operating theatre, by keeping children amused so that they can be anaesthetised when smiling and not crying. The clowns work in pairs in the wards or in the operating theatre. They try to play down the importance of the illness and to bring a splash of colour to the drab rooms; they explain the role of anaesthesia to the children through games, helping to relax and calm them prior to an operation, etc. Other projects in the wards, such as “Wishes” are equally attractive and effective. The aim of this foundation, which works inside hospitals, is induce to hope as an integrating life experience for children suffering from serious diseases. These children need to feel that they are capable of making a wish come true. The organisation asks children, what their greatest wish would be (e.g., “playing in the Camp Nou Stadium with Ronaldinho”, “going to the zoo and touching the animals that can be touched”, “visiting the Disney studios”). The organisation does not take it upon itself to make this dream come true; rather its task is to motivate and spur on the children to do it themselves, by promoting a spirit of overcoming. This emotional state of the reactivation and segregation of energy is fundamental in emotionally overcoming illness. By writing a letter to Ronaldinho, struggling to send him a drawing, sending him another letter, playing on their uncertainties to gradually create an atmosphere of excitement, which is always rewarded – these are phases that are established to work in parallel on the illness through the child’s feelings.
 

Curing in hospital via information
Jean Claude Demers, specialist in Child Life and founder and director of the Le P.A.S. Association (preparation, accompaniment, and discharge of the child) in the Lausanne Children’s Hospital, explained the importance of working on the healthcare worker/parents/patient communication triangle. Adapting technical information to children’s level of understanding, in order for them to accept their own illness, to know how to live with it, and even to avoid the transmission of feelings of guilt due to seeing their parents worried. He also demonstrated the importance of ludic communication between physician and child. Toys, dolls, stories, didactic material, etc, are all tools for bringing them closer together. In the same vein, he also showed how to work on the children’s admission, so that the hospital is seen as an extension of the home, and that instead of a rupture there is a transition, which at times may even be fun.

Curing in hospital via dignity
This was dealt with by Giuliana Fillipazzi, from the European Association for Children in Hospital from the Work Group dealing with the rights of hospitalised children. This was something that she herself suffered for a number of years, during the hospitalisation of her son, suffering at the same time from the inflexibility, instability, dehumanisation and even lack of respect on the part of healthcare centres. As a direct result of her experience, she resolved to fight for children’s rights in hospitals. From these articles or rights, a number of new projects and experiences are appearing all over the world, shedding light on the matter and helping to make hospitalisation more humane.

Curing in hospital via the setting
In their study, Tim Kershaw from Stefian Bradley Architects in Boston and Rosa Clotet, from Llongueras Clotet Arquitectes in Barcelona, confirmed that hospitals can and must be humanised in terms of their space, their setting. Light, views, plants, awareness of the day/night time cycle, the use of colour, smells and sounds can all play significant roles in the improvement or deterioration of a patient’s emotional state. The objective of making patients feel more at home is becoming increasingly prominent. More and more hospitals are being built with environments where children can maintain contact and make friends with other children, or areas in which families can get together in comfort, or waiting rooms where visual stimuli or interactive elements help to alleviate the boredom.
 

Curing in hospital via humanisation
At Sant Joan de Déu Hospital they maintain that “hospitality” must be professionalized by working on the human rights and values of patients. An objective that this centre is working on with optimism and energy. At least that was the impression that those of us attending their Conference got. Once again it is demonstrated that in order to face up to a change of period, such as the one we are currently going through, deep changes to structures and ideas will need to be made.
Once again, it is pleasing to come across educational, healthcare or cultural projects that are truly working. This is possible as the management of the company, hospital, museum or college transmits the energy and desire required to make these projects productive. We can verify that in order to undertake an initiative of this type, we need to ensure that all the professionals on all the different levels feel involved and motivated.

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Reunirse con la familia para una celebración, disfrutar de la lectura en soledad, son algunos de los pequeños actos cotidianos que no se pueden disfrutar durante la hospitalización. Ofrecer un espacio de intimidad puede ser de gran ayuda para el enfermo pero también para las familias. El Espai d’Art Contemporani de Castelló ha colaborado con el Hospital Provincial de la ciudad en un proyecto para dotar de un “lugar de transición” a los pacientes.

Una iniciativa llegada desde el mundo del arte ha llamado la atención sobre las necesidades de los pacientes durante el proceso de hospitalización, dando una respuesta viable y sencilla. Josep Maria Martín, en colaboración con el EACC, ha creado en su obra “Prototipo de espacio para gestionar las emociones” un oasis en el entorno hospitalario abierto a todos los pacientes y familiares.

La idea de este artista, cuya obra gira en torno a las relaciones personales, era proveer al hospital de un espacio de transición entre el hogar y la hospitalización y del centro a casa antes el alta. Se proponía crear un lugar más acogedor para contener las emociones del enfermo propias de esos momentos, así como acoger las relaciones familiares y afectivas.
El proyecto consiste en una estancia construída de manera efímera en uno de los centros del hospital, así como la intervención en las áreas que rodean esta construcción realizada en colaboración con el arquitecto suizo Alain Fidanza, delimitando la zona mediante un color distinto y habilitando dos pequeñas estancias para hacer las veces de “café” y “área de Internet”. En el gran jardín central del hospital, inutilizado hasta este momento, se han colocado sillas y tumbonas, creándose una zona de relax al aire libre. Respecto a la zona construída para este proyecto, se trata de una gran estancia habilitada con libros, películas y una pequeña cocina, que los pacientes pueden utilizar mediante reserva previa. Esta sala puede ser un lugar más humano donde el enfermo pueda estar solo y “descansar” del ambiente hospitalario pero también reunirse con su familia. Y es que celebrar, por ejemplo, el cumpleaños de un hijo en un centro sanitario no es precisamente fácil ni agradable.

Para realizar esta intervención en el Hospital Provincial de Castellón, tanto el centro de arte como el propio artista, han llevado a cabo un largo proceso de trabajo junto al personal sanitario, para tratar de conocer de primera mano cómo es el día a día de un hospital, cómo afecta a la vida de los pacientes y cuáles son las reclamaciones de estos. A pesar de la excelente acogida que ha tenido la iniciativa, este “Prototipo de espacio para gestionar las emociones en el hospital” es un proyecto temporal que permanecerá en el centro de Castellón hasta el próximo mes de agosto.

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