A Síndrome Congênita do Zika e a mulher que cuida: uma análise ecossistêmica à luz da Classificação Internacional de Funcionalidade, Incapacidade e Saúde.

Abstract

Introduction: Children with Congenital Zika Syndrome (CZS) may have multiple disabilities and require continuous care, which, in a context of gender inequality, is assumed by women. According to the literature, they are fundamental in the management of therapeutic demands and experience losses in mental health and in different spheres of life. There are gaps in the characterization of this experience in light of the International Classification of Functioning, Disability and Health (ICF) model - composed of body functions and structures, activities and participation, environmental and personal factors -, and in the analysis of the systemic influences of this phenomenon, which can be carried out based on the Bioecological Model and its pillars: person-context-process-time. Objective: To characterize the impact of SCZ on caregivers in light of the ICF. Methodology: This research was carried out in three stages: (1) study of ICF domains in the Family Impact Module of the Pediatric Quality of Life Questionnaire (PedsQL-FIM 2.0), based on connection rules established in the literature; (2) cross-sectional descriptive study of the disability profile of 46 caregivers of children with CZS, participants in the Together Family Intervention Program, which was carried out between 2017 and 2018 in the states of Bahia and Rio de Janeiro, based on the domains the PedsQL-FIM 2.0 CIF; (3) qualitative study carried out based on the content analysis of thirteen interviews with caregivers, to characterize their ecosystem of functionality in the context of SCZ. Results: (1) In PedsQL-FIM 2.0, 39 main and 13 additional contents linked to the ICF were identified, most of which related to mental functions; (2) In the profile analysis, the greatest losses were seen in ‘emotional functions’ and ‘energy and impulses’, in carrying out ‘household tasks’ and in ‘decision making’. ‘Attitudes’ were identified as the biggest barrier. The partial score for 'activities and participation' showed worse performance and, in the bivariate analysis, lower scores in the total score were related to a worse assessment of the standard of living (of caregivers and children) and lower education. (3) Analysis of the interviews in light of the ICF and the Bioecological Model revealed impacts on mental functions, self-care and knowledge and concepts of caregivers. In addition to a set of proximal systems (domestic environment and health services) and distal (gender and ableist social norms and ideologies and insufficient systems and public policies) that were connected to different components of functionality, revealing that the losses experienced by women in this role they go beyond the individual dimension. Conclusion: The evidence suggests the urgency of structuring policies related to care, to protect those who care and redistribute this work, as well as to address attitudinal barriers and access to services. Furthermore, they reinforce the need to overcome the focus on morbidity psychiatric care for this public, with the incorporation of socio-structural aspects related to care within the scope of clinical and research.