Banca de DEFESA: MONIQUE LEITE GALVAO COELHO

Uma banca de DEFESA de MESTRADO foi cadastrada pelo programa.
STUDENT : MONIQUE LEITE GALVAO COELHO
DATE: 15/03/2022
TIME: 10:00
LOCAL: Remoto
TITLE:

My child is growing and now? Exploring the environmental needs of children with Congenital Zika Syndrome according to their caregivers' perception

 

KEY WORDS:

Congenital Zika Syndrome; Participation; children; environment; caregivers.

PAGES: 45
BIG AREA: Ciências da Saúde
AREA: Saúde Coletiva
SUMMARY:

Introduction: Congenital Zika Syndrome (CZS) was described in Brazil after the outbreak of microcephaly related to the Zika virus (ZIKV) between 2015 and 2016. The vast majority of children have severe impairment of neuropsychomotor development, mainly associated with microcephaly. Promoting the social inclusion of children with CZS is challenging and requires lifelong professional assistance. Participation can be understood as involvement in a life situation and is strongly influenced by physical, social and attitudinal environmental factors. As with other developmental disabilities, children with CZS may be disadvantaged in terms of full participation in society. Although there are studies that assess the positive influence of participation in the social context for the development of children with disabilities, information about environmental needs is still little explored. Objective: To explore caregivers' perception of the environmental needs of children with CZS in terms of barriers and facilitators. Material and methods: This is a qualitative research that included 32 caregivers of children with CZS. Thematic analysis was used to identify the environmental needs perceived by caregivers of children with CZS. The patient public involvement (EPP) approach was incorporated with the purpose of validating the data analysis performed by the researchers. After this step, the data were categorized in terms of barriers and facilitators and validated by the group of researchers. Results: The environmental needs expressed in the caregivers' quotes were initially organized into 10 themes and later consolidated into 7 thematic groups during the EPP process. The themes were: Social support; Accessibility to health services; Community participation; Foods; Architectural accessibility; Medication Adherence and Assistive Technology. Finally, the conceptual map representing the environmental needs perceived by caregivers of children with CZS was elaborated on barriers and facilitators. A relevant environmental need reported by caregivers as a barrier was social support for children with CZS. Ableism was also evidenced as an important attitudinal barrier. Health services were essential for the lives of children with CZS and the availability of auxiliary devices as facilitators of participation. Environmental factors related to medication and food routines were, for the most part, facilitators. Conclusion: This study contributes to critical approaches about the impacts linked to environmental factors of children with CZS, using a participatory action methodology through the involvement of caregivers in the research. Recognition of the daily needs of growing children with CZS is an evolving process, and fundamental to basic rights for adequate living in society. The data point to the need to implement public policies aimed at children with CZS, as well as availability of qualified professionals to apply family-centered care and skills-focused management. Building friendly environments that promote broad social participation will contribute to the healthy growth of children with CZS.

BANKING MEMBERS:
Presidente - 2218795 - EGMAR LONGO HULL
Interna - 1242804 - ADRIANA GOMES MAGALHAES
Externo à Instituição - ALINNE BESERRA DE LUCENA - FCM/PB