Fields of working

Pedagogical management and attention

• Information and orientation for the schools with children living with haemophilia/vWillebrand.
• Psychopedagogical diagnosis.
• Collaboration with teachers, psychologists and social workers to achieve pedagogical actions.
• Following and help to children"s education needs: private lessons, hospital School, etc.
• Vocational and professional orientation.
• To spread of informative material (interesting reports and publications).
• To encourage education through free time activities.
• Taking part in congresses and meetings.
• Assisting to formation courses, retraining people implicated in the maintenance and development of the Psycho-pedagogical Service.

In the daily practice at the Psycho-pedagogical Service it"s difficult to separate the psychological and pedagogical attention: on one hand, there are interviews with a high educational content, focused on prevention and self care. On the other hand, there are interventions with a high philosophical and pedagogical content specially used when people are dying.

Psycho-pedagogical attention at home: one of the most powerful reasons that moved the partners of ASHEGUI to create the Psycho-pedagogical Service was the tragedy lived in those years in the haemophilia community. They had to respond to it, so they saw that a Service was needed, therefore they decide to attend the collective by a different approach than the strictly medical.

During the last years, this kind of attention has changed the most. Since it is related to the HIV and Hepatitis C virus tragedy. Because of this, affected people had to stay in bed for many years and the Service was due to give psycho-pedagogical attention at home.

Psychopedagogical management and attention

• Counselling and psychotherapeutic help for children, teenagers and adults
• Psychotherapies and individualize following
• Orientation and advice
• Psychological diagnosis and reports making
• Attention in terminal situations, palliative cares, and following of the psychological grief process
• Coordinate and drift cases to other centres and health professionals
• Support-teams elaboration
• Contact with professionals of similar entities in national and international environment
• Informative material
• Assistance to journals and retraining courses

Psycho-pedagogical interviews

These are framed interviews with a specific working planning: it can cause deep changes and also it can mean a great inside effort and discipline in a person. There are included also interviews for an accurate need, not framed, that could be misunderstood with a crisis intervention. When a partner has a severe psychological problem, is drift to a specialist or a psychiatrist, depending on the situation, because the psycho-pedagogic action area does not include psychological sickness. Anyway, the Service is adjusted to the requests and needs of people. The affected people and their families are who set the working rhythm.

Phone psychopedagogical interventions

Telephone has been a very useful way of contact, communication and support for our partners, because for many of them to travel to the hospital is not easy at all. Most of the phone psycho-pedagogical interventions are crisis interventions.

Psycho-pedagogical interventions in Hospital environment

The Psycho-pedagogical Service takes part in these areas:

• Interventions in outer requests: basically related to special situations where the affected person asks for ASHEGUI"s psycho-pedagogist. The more frequent situations are: the haemophiliac self-limitation to understand and/or to face emotionally an interview with the specialist doctor, or due to extreme crisis situation.
• Depending on the arisen problems, some years we have registered a high percentage in hospital interventions: urgencies and/or ICU. In those situations our work is focused on the family because the haemophiliac"s needs in those situations are basically medical. However, when it is possible emotional support it"s offered, but always with the consent from the specialist doctors in charge of the patient.
• Intervention in Rehabilitation Service makes possible to support, to cheer, to motivate and to assure that specialist"s instructions are followed. Usually, these aspects are very important for the haemophiliacs, because rehabilitation treatment is usually hard and long. For a long time, most of the psycho-pedagogical visits have been centred in children. So attention and approach has been for us even more important. Rehabilitation Service"s treatment in haemophiliacs focuses on the decrease of the several sequelae caused by the bleedings and on the prevention of articular malformations.
• Interventions in Day Hospital, replay to small surgery, which is done the same day, and without complications. The main objective in this area is to assure that both the affected persons and their families have covered all their needs. In special cases, when it is necessary, we speak with the surgery staff and we offer emotional support during the whole process.

The ASHEGUI"s professional keeps daily contact if the patient agrees. The intervention extends to the family. Usually, the interventions are psychological, however, in many cases, it can be philosophical. All the areas we have spoken about are reflected in the graphic where we can see the work volume and the evolution. The results of what we call hospital care has been very positive for ASHEGUI. In fact, to support, to advise, to help, to be with our partners in very difficult situations; such us being in hospital with a serious problem, give us the strength and motivates Ashegui"s staff to keep on working.

Management in social issues

Information about social services through the experts of the Spanish Federation of Haemophilia

• Collaboration to get: - Handicapped certificate - Social help programs - Pensions - Haemophiliac international card
• Advising about resources.
• Help and orientation in social integration and normalization.
• Coordination in intervention and help with Social Services of Town Hills in Guipúzcoa.
• Collaboration with non profit entities which have the same social objectives.
• We take part in many social acts.
• Judicial action advice.

The social interventions have a big repercussion in the collective as we can see in the graphic we have included.

Management in health area

• Health interests advice: · National and International Hospitals · Medical resources · Genetics studies
• Lectures about healthcare and haemophilia/vWillebrand disease.
• Collaboration with different specialists and with other Healthcare Centres.
• Disseminate information about haemophilia/vWillebrand and other congenital coagulopathies diseases.
• Encourage healthy habits to improve life quality.
• Collaboration with Medical Services.

We specially appreciate the collaboration and whole treatment from the different Medical Services through teamwork. Looking for communication and collaboration with the more needed specialists by the patients. The perspective and response to a crisis situation is more suitable, under any point of view, and this fact will redound in the benefit of the patient. We differentiate multidiciplinarity in several levels:

1. Prearranged meetings among specialists.
2. Meetings that come out while new situations or medical problems are shown.
3. Meetings that come out with the other health staff.

The prearranged meetings with different specialists started in 1997, eighteen months after the Psycho-pedagogical Service was created. The project included all the medical services attending haemophiliacs as well as the Psycho-pedagogical Service. In the attached document, you will see the evolution of those meetings through the years. Even a lot of complications have appeared; we have achieved to maintain a work rhythm, being affected person the most benefit from it. On the other side, we show you in a second graphic the track record in this section, related to different kind of relationships with medical staff. We find the proportion of contacts with them very meaningful.