Título:	Fome, jornadas cotidianas maternas e erros inatos de metabolismo
Autor(es):	Rabelo, Daniela Amado
Orientador(es):	Sá, Natan Monsores de
Assunto:	Fome Doenças genéticas Doenças raras Maternidade
Data de publicação:	22-Jun-2026
Data de defesa:	13-Ago-2024
Referência:	RABELO, Daniela Amado. Fome, jornadas cotidianas maternas e erros inatos de metabolismo. 2024. 127 f. Tese (Doutorado em Bioética) - Universidade de Brasília, Brasília, 2023. 329 F.,
Abstract:	The thesis aims to propose a comprehensive approach to the dimensions of hunger, through a bioethical and social-health interface, within the interactive and everyday social journeys of mothers in their search for food and nourishment for children with Inborn Errors of Metabolism, particularly Classical Homocystinuria and Phenylketonuria. Inborn Errors of Metabolism represent a group of rare diseases of genetic origin. Phenylketonuria and Classical Homocystinuria are amino acid disorders classified as intermediary metabolism disorders, which are treatable with a lifelong mandatory diet and strict clinical and biochemical monitoring. When untreated, these chronic rare conditions compromise life and result in irreversible sequelae due to metabolic decompensation. These sequelae include neurological symptoms, developmental and learning impairments, behavioral changes, and pathophysiological conditions affecting multiple body systems. From a biopsychosocial perspective, individuals with Inborn Errors of Metabolism face the daily challenge of restrictive and limited diets and the consequences thereof. Hunger, linked to the existential minimum represented by the right to food, manifests in a unique way within the context of these rare diseases. This thesis, aiming to demonstrate this singularity, is structured around five core principles: (i) the maternal journeys in the quest for nourishment, (ii) issues related to food and nutritional security, (iii) the perspective of the Human right to adequate food, (iv) the symbolic acts and interactions surrounding food, and (v) the interactions surrounding hunger. Within the scope of Food and Nutritional Security, every person is guaranteed the right to regular and permanent access to quality food, in sufficient quantity, without compromising access to other essential needs. Thus, the condition of hunger becomes an indicator of the violation of the Human Right to Adequate Food. This thesis adopts a bioethical approach with a social perspective, interfacing with Public Health, and employs the Corbinian version of Grounded Theory to develop substantive theory focused on the daily challenges faced by mothers in the search for food and nourishment for their children. The study population comprised three groups: (a) mothers of individuals with phenylketonuria, (b) mothers of individuals with Classical Homocystinuria, and (c) nutritionists specializing in Inborn Errors of Metabolism. Mothers with children aged six months to 12 years were selected. Data collection was conducted with two groups of Brazilian mothers (n=27) and specialized nutritionists (n=4). Research diaries, non-participant observation of events on Inborn Errors of Metabolism and rare diseases, sociodemographic forms, and semi-structured interviews were used. Data analysis through axial coding identified three categories, 11 subcategories, and 28 dimensions. The categories are: (i) First Steps, (ii) Restrictions and Confrontations to Belonging, and (iii) Distinct Hunger and Adaptations for Inclusion. The categories and subcategories were presented in accordance with Corbinian GT (2015), based on the meanings offered and data collected from the set of strategies outlined in the research design. The "First Steps" category encompasses the dynamics of maternal journeys across the dimensions of person, time, and place. The second category presents the accesses and non-accesses to food, low-protein foods, and metabolic formulas. It then explores stigma, discrimination, and social exclusion in the face of the social interactions established between mothers and the public on the journey. The "Distinct Hunger and Adaptations for Inclusion" category presents the symbolic construction of hunger and its representations in the Inborn Errors of general and specific meanings categorized during the analysis process. During the integration phase, a central category was consolidated, which functions as a lens for forming the "final substantive theory" titled "Revealing Hunger in Inborn Errors of Metabolism through the Journeys of Mothers and Children." In the integration, the FOMEIM matrix was created (mapping conditions, actions-interactions, and consequences). The evolution of the analysis allowed the identification of five conditions, six actions-interactions, and 17 consequences, most of them negative (n=11), referenced in a visual diagram. The substantive theory was generated from a rigorous analysis of real-world data with discussions supported by scientific literature from the bioethical, philosophical, and social-health fields. The central category "Revealing Hunger in Inborn Errors of Metabolism through the Journeys of Mothers and Children" synthesizes the complexity of the hunger experience in this context, encompassing both the material dimension, related to access to safe and adequate food, and the relational dimension, referring to the search for recognition, support, and belonging to a community that understands their specific needs. Hunger, in this sense, transcends the mere lack of food, manifesting as a multidimensional experience that significantly impacts the quality of life of families. Organic solidarity networks, characterized by emotional, informational, and communicational exchanges, play a fundamental role in mediating care for families with Inborn Errors of Metabolism, especially concerning access to food and multidisciplinary care. Given the complexity of "hunger in flux" and the ecosystemic transit, it is proposed to strengthen these networks, focusing on increasing the sense of belonging, expanding food governance in the Unified Health System (SUS), reducing social and food stigmas, and mitigating tensions and conflicts in social structures.
Unidade Acadêmica:	Faculdade de Ciências da Saúde (FS)
Informações adicionais:	Tese (doutorado) — Universidade de Brasília, Faculdade de Ciências da Saúde, Programa de Pós-Graduação em Bioética, 2023.
Programa de pós-graduação:	Programa de Pós-Graduação em Bioética
Aparece nas coleções:	Teses, dissertações e produtos pós-doutorado

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