Creatividad, identidad y subjetividad de personas con enfermedades crónicas: Estado del arte / Creativity, Identity, and Subjectivity of People with Chronic Diseases: State of the Art

RESUMEN

Resumen Este artículo es parte de una investigación que pretende identificar el impacto que tienen las enfermedades crónicas en el desarrollo de la creatividad, la identidad y la subjetividad de los sujetos que las padecen. El documento presenta la revisión de 50 artículos con resultados de estudios que, en la última década, investigaron sobre la creatividad en relación con la identidad y la subjetividad de niños, niñas, adolescentes y jóvenes que viven con enfermedades crónicas. Desde lo metodológico, se trata de un estudio no probabilístico de tipo intencional, en el cual se abordaron datos bibliométricos construidos a partir de bases de datos especializadas y, posteriormente, se efectuó un análisis interpretativo crítico de estas investigaciones desde una perspectiva cualitativa, para el que se recurrió a la categorización de la información. Los resultados evidencian que el uso del arte como estrategia terapéutica facilita el afrontamiento de la enfermedad; sin embargo, también se evidencian afectaciones relevantes en el sistema familiar y relacional de quienes viven con estas enfermedades. Se concluye que la investigación en este campo se ha dado principalmente desde la medicina y la psicología, pero dejó un campo abierto que puede ser explorado por la investigación social.

ABSTRACT

Abstract This article presents a state of the art that integrates the review of fifty articles of the results of studies that, in the last decade, investigated creativity in relation to the identity and subjectivity of children, adolescents and young people living with chronic diseases .The document is part of a doctoral research that aims to identify the transformations that creativity undergoes in relation to the development of identity and subjectivity of children living with chronic diseases, such as HIV/AIDS, cancer and diabetes, given that these are the diseases that Sontag (2008) relates as the diseases that cause the greatest social and economic impacts and that modify the life project of people in the long term. From the methodological point of view, bibliometric data constructed from specialized databases such as PubMed, APA, Science Direct, Proquest, Redalyc, Scielo and Scopus were approached; subsequently a critical interpretive analysis of these investigations was carried out from a qualitative perspective. The results show that the use of art as a therapeutic strategy facilitates coping with the disease; however, relevant effects are also evident in the family and relational system of those who live with these diseases. It is also found that a large part of the research, as suggested by Sontag (2008), assumes diseases as an enemy, making use of the language of war, in addition to locating whoever experiences the disease as a battle hero or as a survivor when it is possible to go through the disease in a satisfactory way, however, it is also evident that this position implies a struggle of the subject with himself. Also, some of the authors state that the disease facilitates the recognition of abilities, tastes and skills of which one was not aware before experiencing it. Through these investigations, the understanding of the importance of relationships with peers as a key aspect for the development of self-regulation is broadened, which facilitates self-care practices far from victimization and family overprotection. Creativity has been understood mainly from artistic exercises, art-therapy and the use of some resources such as painting, drawing, music and dance for the approach to the subject who lives with chronic diseases, from the research exercises themselves, but also from an attempt to allow the subject to establish diverse communications with his context and to establish communication bridges with himself and with his new life circumstances. However, this perspective leaves aside the proposal of Lavie, Narayan and Rosaldo (1993), who argue that creativity is the human capacity to respond to daily circumstances in different ways, which allows expanding the field of action of what creative, facilitating that it is linked to the daily lives of the subjects and other ways of displaying creativity are explored, from relationships, from the practices of self-recognition and self-care regarding the same disease.It is also found that chronic diseases are related to metaphors that force the subject who experiences them to assume the role of warrior, war hero or war victim; these postures assume burdens for the subject and, although in some cases they help to assume the disease with a spirit of improvement, they also increase responsibility, guilt and difficulties in cases in which the disease is not overcome.