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THE PSYCHOLOGICAL WELL-BEING OF EVERY PERSON IS PART OF THE RIGHT TO HEALTH HELP US SPREAD IT

A year in Serbia

 G.Scurci and G.Tolve of Psy + Onlus spent a year in Serbia engaged in a research path on deinstitutionalization. They had the opportunity to explore closely the reality of local institutions and in the following text they offer us a vision of the experience made, with the generosity and clarity that distinguish them.

"I stay another four hours in the saddle, and ride until the sun is almost setting, according to a healthy habit that I had long been forced to lose, before stopping in any village to spend the night. It is one of the sensations I have always loved more, and which so often gave me the illusion of being free and master of my life: that cluster of minutes with an indefinable consistency, when it is not yet dark and it is no longer day, and you enter a place that you have never heard of it, with the awareness that tomorrow you will already be far away, and that for other months, for other years, for other clusters of minutes of the same intensity you will continue to move away, following the unraveling of a skein whose thread unwinds between hands without being noticed, and ends up on the other side of the world ".

 from "Brum Brum - 254.000 kilometers on a Vespa" by Giorgio Bettinelli (1)

7When we won the scholarship in the summer of 2008, the Basileus project had just been set up and seemed to be perfectly suited to our needs. It was a project of the European community, included in a more general framework called "Erasmus Mundus". As an exchange activity, between universities of member countries of the European community and Balkan countries, the Basileus provides scholarships for all the figures of the university system: students, PhD students, researchers, professors and administrative staff. By winning a scholarship of this type you can take exams, carry out internships as well as research and study activities on particular topics. We were the first two students in Europe to take advantage of this scholarship: for this reason, apart from the undoubted pioneering charm, we found ourselves confronted with problems typical of untrodden terrains. Unlike those who take part in well-established and well-defined exchange projects such as Erasmus, our path, from the beginning, has been characterized by ongoing construction and continuous negotiation. There were no well-defined rules and procedures, so we had to create a sort of network that was able to regulate our activities, justify our presence in Belgrade and our benefit from a scholarship. The only activity planned at university level was a language course that we attended compatibly with the research commitments. With these assumptions began our year in Serbia, a beautiful experience from a human and educational point of view for two students close to graduation.

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In agreement with our supervisor Prof. Viviana Langher, we had as main objective to carry out research for the thesis. The design included two clinical groups and one control group to be found in hospitals and normal schools. For this reason, after establishing the first relationships using the contacts provided by the rapporteur, we began to attend the first structure called "Specijalna bolnica za cerebralnu paralizu i razvojnu neurologiju" [2]. The structure is part of a complex of multi-specialist clinics and is an institute dedicated to Cerebral Palsy consisting of two substructures: the first has an outpatient and residential organization and represents the headquarters; the second is a day hospital and has a different location. Our experience in the field began in the main office, with the meeting of Dr. Predrag Vidovic, executive psychologist and our tutor inside the hospital. The entrance to the structure was characterized by a climate of strong hospitality. The approach to clinical activities has followed a gradual path. The first phase was of insertion and observation. A direct involvement of the patients followed, aimed at collecting research data. Initially, at the main facility, we followed all clinical activities. In this hospital, diagnostic questions are collected for children with suspects PC [3]. After sending from more general hospitals or general practitioners, the child arrives in the special hospital. Here follows a multi-specialist diagnostic process. If the child is diagnosed with PC and if the family does not have the opportunity to assist him due to financial problems, or because of a residence in rural centers far from these structures, the option of hospitalization is offered. The child from six months is welcomed in the institution together with the mother. The two are given a room in which they will reside for a period of about three years, at the end of which the mother will leave the hospital and the child will continue his activity inside it with the possibility of returning home on weekends and on holidays. Every day the child follows a rehabilitation process which includes physiotherapy, speech therapy, work therapy and recreational groups under the supervision of the psychologist; it also follows an educational path in a special school inside the hospital. The latter is divided into two sectors: the normal school, which follows the didactic programs for children without any pathology and the special school, which instead uses simplified didactic programs for children with intellectual and cognitive deficit. During this introductory observation period, we had the opportunity to discuss with the Serbian colleagues about a system totally opposite to the Italian one and far from our conceptual models of reference and our beliefs. These have led us to a constant debate, often without convergence, on the reasons for an institutionalizing intervention such as the one just described; we confronted them on the topic of hospitalization and on the effectiveness of what is socially marginalized, with all the psychological implications related to it. Even now we wonder how useful it can be, from a clinical point of view, to include mothers in such a long-term rehabilitation process and how much, at the same time, it can prove counterproductive for the whole family. Other material of interesting discussions was the way of understanding the work of the clinical psychologist, whose professionalism unfolds at the moment of diagnosis made on neuropsychological and cognitive bases, certainly functional to an accurate identification of the pathology, but without a consequential design . All this ends with the inclusion of the child in a purely medical rehabilitation path, within a non-inclusive system, based on the split between normal and pathological. This conception deprives the psychologist of what we believe to be the main component of his work, namely the possibility of designing and building interventions based on relationships and aimed at improving the quality of life, in the specific case, of children with cerebral palsy.

The second part of our work with PC patients was carried out in the other facility: a Day Hospital located in another district of the city. The latter has two parallel functions: one of a special school, organized in the same way as the headquarters and one of specialized assistance for PC patients resident in Belgrade. The services concern both children attending school and adults with PCs. Here too, our insertion has involved several phases. In the first period we followed the activity carried out by the diagnosed psychologist, who illustrated the battery of tests used in the structure explaining delivery, theoretical assumptions and evaluation. Each patient periodically visits the psychologist and undergoes routine testing to measure cognitive and intellectual abilities. The second part of our stay in the facility was characterized by the management of research and by an involvement in the activities carried out by the other two psychologists in the hospital. During this period we had the opportunity to recruit our champion, in an atmosphere of pleasant participation. We also have good relationships with patients and colleagues, rich in content and emotions that we had not experienced in Italy. Our presence aroused a lot of curiosity and the short period we spent in the company of these people, was pervaded by a strong human warmth combined with the typical excitement that accompanies a novelty; we spent some wonderful mornings talking in a broken and often funny Serbian with them, causing great hilarity among all because of our recurring mistakes. Human contact enriches and amazes. So the patients opened up to us by showing us their human side, their weaknesses and their dreams, fantasies as common as they are unattainable. During one of the mornings spent sifting through medical records, to make a list of the potential members of the experimental group, consistent with the pre-established inclusion criteria, a group of patients came to see us greeting us in Italian; so we found out that they had spent an afternoon studying the presentations in our language. One of them who had great difficulty speaking, gave us a book of poems she wrote, with a beautiful dedication. In this context, an interesting exchange of ideas and professional opinions was established, which led to the participation of psychologists and some patients in a conference organized by the Italian Development Cooperation on issues of de-institutionalization and integration, a topic particularly related to the service offered from the hospital.

The recruitment of the second clinical sample and the control group presented many difficulties. Following the metaphor of the journey, we were on the unpaved and unpaved road of a path that would prove to be far more tortuous than we imagined. Having exhausted our contacts we had, at first, to search for the structures where we could find the subjects and then propose our work and obtain the necessary authorizations for access. At this level we have encountered the greatest difficulties. For the control sample, to be recruited from middle and high schools, the search was long and complicated by bureaucratic problems that were often unsolvable. We requested availability in six schools in Belgrade by contacting the psychologists present in the institutes and subsequently the principals who, despite the manifest interest in our work, in five out of six cases, placed us in front of a complex bureaucratic practice, which was extremely expensive time-consuming and included a clearance to request from the Serbian Ministry of Education. All these factors have led us to give up and seek contacts even outside Belgrade. We went to Kragujevac [4] where, thanks to the help of an informally known psychologist, we were able to recruit the second part of the control group in a local secondary school.

Finding the group of boys with epilepsy was even more difficult. The hospital that initially gave us the availability to find the sample, after postponing the start of the administration of the tests for at least three months, informed us that it was impossible to carry out the investigation with them, due to problems of internal coordination and clutches. We tried to turn to other hospitals but without luck, since the practice requires that a research project like ours is legitimized by ministerial authorizations, which are very difficult to obtain. Thus, almost at the end of our period of stay in Serbia, we found ourselves almost in the condition of having to modify the design of the research due to the lack of the main sample. In this unpleasant and very difficult situation, we were helped by a colleague and excellent friend of the faculty of Special Education and Rehabilitation who carried out their internship from Somatoped [5] in a neurological hospital for childhood and adolescence. Thanks to his mediation, we received permission to carry out the research by the director of the department.

Here we found ourselves alongside medical professionals, our tutor was a physiotherapist and somatoped and the doctors with whom we interfaced were neurologists. There were clinics and rooms for EECG and the services offered included check-ups and rehabilitation sessions for neurological patients. Even if two psychologists are foreseen in the structure, their function was that of counselor or psychotherapist for those who saw the need for it.

Il Basileus [6] in his being a newborn, even if provided with precise regulations, he had not been developed on Serbian territory, or in a country that is now re-entering the world of international university exchanges, after a period of great difficulties. All the connections between the structures were missing and many of the problems we encountered were due precisely to the absence of clear agreements at the institutional and political level. In these conditions we had to put into operation a network that in other exchange contexts would have already been active and would have provided for agreements between universities and structures. Paradoxically, it is in this process that, a few months after the end of our experience, we identify the source of the greatest formative growth. In a situation of uncertainty and precariousness such as the one just described, we are faced with the need to suspend any judgment in order to fully engage in the search for practical solutions. Our greatest achievements in academic-professional terms and at the same time the possibility of better understanding a complex reality like the Serbian one derived from this need. A country with a very unstable recent history that sees a cumbersome and rigid legislative system, still in continuous reworking, with a population that makes welcome and hospitality its strengths. Where the main risk was to get entangled in the thick bureaucratic network, the social network came to our rescue. We finished collecting the data, extending our stay in Belgrade for a good part of the summer, and we returned home feeling richer. This wealth certainly includes the notions of Neuropsychology acquired thanks to an exam taken in the Faculty of Special Education and Rehabilitation, the skills on diagnostic testing calibrated on Cerebral Palsy to which they trained us in the hospital, but above all, all the emotions and sensations that are tested in the field in contact with people. Right in the field, you are put to the test on a personal level and you experience what is new and difficult, but it is resolved "by supporting the unraveling of a skein, whose thread unwinds in your hands without being noticed and ends in the other part of the world ”(cit. Giorgio Bettinelli).



[1] We want to dedicate this chapter to Giorgio Bettinelli, an Italian journalist, writer and traveler, who died last year in China at the age of 53. Giorgio Bettinelli traveled on his Vespa PX 254.000 km across five continents; from Rome to Saigon, from Alaska to Patagonia, from Melbourne to Cape Town, from Chile to Tasmania. During his travels he learned six languages: English, Indonesian, Spanish, Portuguese, Russian and French, of course his native language, Italian, must be added to these. Have a good trip Giorgio!

[2] "Special Hospital for Cerebral Palsy and Child Neuropsychology"

[3] We will use the abbreviation PC as an abbreviation to indicate Cerebral Palsy

[4] Cities in the south of Serbia

[5] Specific address of the faculty of Special Education and Rehabilitation, addressed to the taking charge of people with motor problems

[6] Basileus: "Balkans Academic Scheme for the Internationalization of Learning in cooperation with EU universities" http: www.basileus.ugent.be

international cooperation, psychology, Belgrade, Mental health





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