Banca de DEFESA: MARIANA LEONESY DA SILVEIRA BARRETO

Uma banca de DEFESA de DOUTORADO foi cadastrada pelo programa.
STUDENT : MARIANA LEONESY DA SILVEIRA BARRETO
DATE: 04/03/2022
TIME: 14:00
LOCAL: Pós-graduação em Psicologia do Instituto de Psicologia da UFBA (via webconferência)
TITLE:

Transitions and ruptures: becoming an adolescent with Duchenne muscular dystrophy

KEY WORDS:

Transitions and ruptures.Adolescence. Duchenne Muscular Dystrophy

PAGES: 160
BIG AREA: Ciências Humanas
AREA: Psicologia
SUBÁREA: Psicologia do Desenvolvimento Humano
SUMMARY:

Duchenne Muscular Dystrophy is a rare neuromuscular degenerative pathology. One of the specificities of this pathology is that the individual gradually loses muscle tone due to the lack of production of dystrophin, a protein responsible for the regeneration of this tissue. Without dystrophin, the muscles become fragile and the person with Duchenne tends to gradually lose their ability to move and die from heart and respiratory muscle failure. Throughout his or her life trajectory, the individual with Duchenne experiences different breakdown processes and crises. In adolescence, there are different specificities in the course of their development and, in the case of the adolescent with Duchenne, it is precisely during this period that they experience the worsening of their clinical picture. Thus, the teenager with Duchenne, besides the characteristic changes of puberty, also goes through a process of transformation of his body due to the progressive loss of his muscular capacity. Considering the many challenges faced by people who experience this phenomenon, the present work assumed the following research problem: how do the processes of semiotic regulation occur in the course of becoming an adolescent with Duchenne? As a general objective, this work sought to understand the processes of transitions and ruptures experienced in the process of becoming an adolescent with Duchenne. Its specific objectives were: a) to analyze the dynamic processes of continuity and discontinuity in the space-time relationship in the process of becoming an adolescent with Duchenne; b) to identify and analyze the relation of semiotic mediation linked to the perception of self and of the other in the crossing of space-time experience through the process of becoming an adolescent with Duchenne; c) to analyze the interaction of the teenager with Duchenne with the use of cultural instruments and artifacts; d) to discuss and analyze the elaboration of the imaginative process of the teenager when reflecting on his past experiences and on his future expectations. To this end, this thesis is based on Semiotic-Cultural Psychology. Two adolescents with Duchenne Muscular Dystrophy living in the city of Lauro de Freitas/Ba and Salvador/Bahia, respectively, with different socioeconomic levels participated in the research. One of them studied in a public municipal institution and the other in a private one. As a participant selection criterion, we selected adolescents who did not have any comorbidity or intellectual disability. For data collection, these adolescents were invited to participate in three meetings. In the first meeting, magazines, cardboard, and clippings were used as facilitators of data production.  The second meeting was held with the objective of deepening the points of transition and rupture that marked the life trajectory of each participant that were reported in the first meeting. The third meeting, in turn, was intended to clarify any doubts of the researcher about the life trajectory of each adolescent with Duchenne. Due to the pandemic caused by COVID-19, only the teenager, a private school student, was able to participate in person in all the meetings previously planned. The public school student, on the other hand, participated in two face-to-face meetings and the doubts that emerged during the data analysis process were clarified by telephone contact. As a procedure of data analysis, a comprehensive analysis was carried out through which the following thematic axes were elaborated: 1) the perception of self in the crossing of the experience of becoming an adolescent with Duchenne; 2) the perception of the other in the crossing of the experience of becoming an adolescent with Duchenne; 3) the interaction with the objects, instruments and cultural artifacts in the crossing of the experience of becoming an adolescent with Duchenne. The results pointed to the fact that the process of becoming an adolescent with Duchenne is crossed by the space-time experience. Each life trajectory experienced is idiosyncratic, dynamic, and mediated by symbolic relations constituted from a network of signs, meanings, and cultural artifacts shared in their sociocultural context. A common point between two adolescents with Duchenne who participated in the research were memories of frequent falls, feeling of muscle fatigue, and the moment of identification of the clinical diagnosis, aspects that constituted themselves as significant events for the understanding of their respective processes of transition and rupture. In addition, there was a prospection around a future that was constituted in the hope of finding a cure for Duchenne. Despite the similarities, the way each adolescent experienced the perception of self, of the other, and interacted with cultural instruments and artifacts was uniquely mediated by the set of signs, meanings, and instruments accessible and arranged in each specific developmental context. We conclude, from this work, the importance of understanding the developmental transitions and ruptures experienced by adolescents with Duchenne for the expansion of public policies aimed at this public.

 

BANKING MEMBERS:
Presidente - 1524745 - MARIA VIRGINIA MACHADO DAZZANI
Interna - 3012885 - GIUSEPPINA MARSICO
Interna - 794.910.225-04 - LIA DA ROCHA LORDELO - UFBA
Externa à Instituição - VERONICA GOMES NASCIMENTO
Externa à Instituição - VIVIAN VOLKMER PONTES - UFBA