Banca de DEFESA: FERNANDA DOS REIS SOUZA
Uma banca de DEFESA de DOUTORADO foi cadastrada pelo programa.DISCENTE : FERNANDA DOS REIS SOUZA
DATA : 14/05/2021
HORA: 14:30
LOCAL: https://www.youtube.com/user/labvideoisc
TÍTULO:
Congenital Zika syndrome and the woman who cares: an ecosystem analysis in the light of the international classification of functionality, disability and health.
PALAVRAS-CHAVES:
Zika virus infection; Caregivers; International Classification of Functionality, Disability and Health; Children with Disabilities; Child Care.
PÁGINAS: 168
GRANDE ÁREA: Ciências da Saúde
ÁREA: Saúde Coletiva
RESUMO:
Introduction: Children with Congenital Zika Syndrome (SCZ) have multiple disabilities and require continuous care, which, in a context of gender inequality, are 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 the 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, that can be realized from the Bioecological Model and its pillars: person-context-process-time. Objective: To characterize the impact of SCZ on caregivers in the light of the ICF. Methodology: This research was carried out in three stages: (1) study of domains of the ICF, Family Impact Module, of the Pediatric Quality of Life Questionnaire (PedsQL-FIM 2.0), based on connection rules established in the literature; (2) a descriptive cross-sectional study of the disability profile of 46 caregivers of children with SCZ, participants in the Family Together Intervention Program, which was carried out in the years 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 caregiver interviews, to characterize their functionality ecosystem in the context of SCZ. Results: (1) In the PedsQL-FIM 2.0, 39 main contents and 13 additional ones related to the ICF were identified, most of which were related to mental functions; (2) In the profile analysis, the biggest losses were seen in the ‘emotional functions’ and ‘energy and impulses’, in the performance of ‘housework’ and ‘decision making’. ‘Attitudes’ have been identified as a major barrier. The partial score of ‘activities and participation’ portrayed worse performance and, in the bivariate analysis, lower scores on the total score were related to worse assessment of the standard of living (of caregivers and children) and lower education. (3) The analysis of the interviews in the light of the ICF and the Bioecological Model revealed impacts on the mental functions, self-care and knowledge and concepts of the caregivers. In addition to a set of proximal (home environment and health services) and distal systems (gender and capacitist 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 that role they extrapolate 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 cope with attitudinal barriers and access to services. Furthermore, it reinforces the need to overcome the focus on morbidity psychiatric of this public, with incorporation of socio-structural aspects related to care within the scope of the clinic and research.
MEMBROS DA BANCA:
Presidente - 458.053.855-20 - CARLOS ANTONIO DE SOUZA TELES SANTOS - UEFS
Interno(a) - 1433789 - JORGE ALBERTO BERNSTEIN IRIART
Externo(a) à Instituição - LUCIANA CASTANEDA RIBEIRO
Externo(a) à Instituição - SHAMYR SULYVAN DE CASTRO
Externo(a) à Instituição - SILVIA DE OLIVEIRA PEREIRA