A Importância Do “Saber Genética” Como Instrumento De Informação Para Os Responsáveis De Assistidos Pela Apae De Parnaíba-Pi

Abstract

When it comes to parents and family members' knowledge about the genetics involved in the condition of their patients, it is important to highlight that regardless of the clinical condition of their child or relative, whether it is a rare or chronic disease or any other type of disability, guardians often end up resorting to the internet to answer their questions. However, they require not only information but also to be heard with empathy, tact, and sensitivity, since when dealing with conditions, the vast majority of which are genetic, parents consider themselves responsible for the disability of the patient, causing several psychological obstacles, including guilt. In this context, the objective of this study was to carry out teaching activities in genetics for family members of patients assisted by the Associação dos Pais e Amigos dos Excepcionais (APAE) of Parnaíba-PI and subsequently analyze the effectiveness of the actions, in addition to addressing the psychosocial relationships involved in the daily lives of the participants. Therefore, this study is a descriptive analysis, of a qualitative-quantitative nature, previously approved by the Comitê de Ética em Pesquisa da Universidade Federal do Delta do Parnaíba, code 7.305.291. Pedagogical teaching materials were prepared to assist in educational interventions, and forms were also used to obtain research data. The actions were carried out over three months in different environments of the institution: the school and the clinic, with the participation of thirty family members and addressing different themes such as Autism; Intellectual disability; Cerebral palsy; Attention Deficit Hyperactivity Disorder; Brain malformation and Down Syndrome. Based on the results, it was possible to verify the social characteristics of the participants, their prior knowledge about the area of genetics, the factors that influence the obtaining of information by family members and, subsequently, to demystify the study of this area with the application of teaching materials and facilitated educational interventions, in which it was possible to describe the effectiveness of educational actions quantitatively and also confirm them through statistical analyses. In addition, it was possible to discuss psychological obstacles related to the daily lives of the participants, such as maternal overload, lack of information, social discrimination, and the importance of professionals trained to welcome and support this population, which often finds itself in a context of emotional fragility. Given the above, the inclusion of education in Genetics at APAE-Parnaíba, through university research, had a positive impact, promoting a greater understanding of genetic conditions by family members, ensuring spaces for the exchange of experiences, and contributing to the dissemination of scientific knowledge and the reduction of social stigmas. Furthermore, it was noticeable that the didactic and empathetic approach, combined with accessible materials, favored dialogue and learning, thus highlighting the importance of continuous educational initiatives that combine information, reception, and inclusion in care for people with disabilities and their families.