Atención a la diversidad: apoyo psicopedagógico a niños/as oncológicos y sus familias

Abstract

The thesis presented is part of the broad area of psychopedagogic intervention with ill children. Part of the process of "attention to diversity "and "education for all" that has become so popular in recent years as a result of recognizing the right to education (including the right to personal and family support to achieve a correct development) to all citizens, regardless of their personal or social conditions. Theoretical models and practical experiences that have been generated in this field of education serve as conceptual architecture for the design and development of this research. Against this general background I have sought to carry out a study that will in turn be a reflection of my professional career over the last few years, and also of what I have been able to learn from academic culture in terms of carrying out research work for my doctorate thesis. It has not always easy to combine work, studying and research. Even less so when each of these spheres requires such an intense level of involvement on a personal and work level. Nevertheless, I am pleased to present the result of all this effort and work. What we are dealing with here is a research study that combines personal and also scientific and professional interest. Personal, because I have devoted myself intensively to this area in the last few years and have worked as a contracted specialist for the Asocición Española contra el Cáncer, in the Clinical Hospital of Santiago de Compostela. Furthermore, the subject of attention to ill children and their families has permitted me to place this investigation in an area that borders both psychology, my original area of study, and education, the area of study to which I have devoted myself in the last few years. From the scientific and professional point of view, the study of “coping styles” seems to me to be a core question in the support processes that can be offered not only to ill children but also to their families. The “coping styles” allow us to pay more precise attention to the whole set of adaptive processes of the ill person and their surroundings. Not only the styles related to illness, but rather those of a relational, behavioural, and so on, that are generated by the announcement of the illness and its evolution. I understand that we are dealing with an area of both new, as well as, significant importance, for psychopedagogy, an area, moreover, in which medical, psychological, and educational elements intertwine. From the scientific standpoint there is currently a large consensus that states that paternal behavior and affectivity play a substantial role on the growth and development of the child and that different paternal behavior and attitudes are associated with generalized and stable behavioral and attitudinal tendencies in children (Vance y Eiser, 2004)1.Existing literature in the field of infant oncology is still not clear as to the critical factors that contribute to the paternal psychological adjustment in the diagnosis stages and treatment phases, nor is it clear what factors are associated with the psychological adjustment of the parents and the good educational treatment to their children or what kind of support they will require so as to achieve a positive adaptation to the new situation. It is thus then, from among the manifold subjects that can be tackled from Psychopedagogy in the field of oncologic illnesses, I have chosen the one related to the basic functions of educational work: support systems to people who must face an illness as serious as cancer. I have focused the study on “styles of coping” which parents of oncologic children develop, and the way in which, knowing them, we could help them overcome the huge impact that the illness generates. Linked to the topic of coping with illness, “depressive symptomatology” almost always appears, and which in some cases is at the root of depression and the incapacity of some persons to overcome the illness and to face the challenges of daily life. Knowledge and study of the existing relations, if there are any, between paternal coping with illness and depressive symptomatology can help in the field of practical in-hospital and extra-hospital psychopedagogy, to detect at the onset of the illness, subgroups of parents at risk of developing severe depressive processes or dysfunctional styles of coping with the situation. Furthermore, knowing this, we are in a position to set in motion learning, 1 Vance, Y. y Eiser, C. (2004). Caring for a Child with Cancer: a Systematic Review. Pediatric Blood Cancer, 42: 249- 253 orientation, and supervision of more effective strategies for affronting a given situation. This will entail a greater adaptation of the parents to the difficult situation, as well as a better emotional and behavioral adaptation of both the parents and the ill children during the whole process. The thesis includes a second part of self-analysis of my own work with ill children and their families. As anyone may understand, the work of offering psychopedagogical support to ill children and their families is not easy. The emotional wear on the professionals is very great. In my case, this has certainly been so. Although it gives one immense satisfaction to see how some boys and girls improve as treatment advances, the opposite process is also immensely heartbreaking. Hence I feel it important to include in the thesis my own figure as a support professional: my own style of coping with the situation, since I have lived the experience with the children I have attended (with a sample number of them) and with their families. As a result of the analysis of the said experience, I hope to be able to provide suggestions to those interested in devoting themselves to this kind of work.