Banca de DEFESA: TAYNAH NERI CORREIA CAMPOS

Uma banca de DEFESA de MESTRADO foi cadastrada pelo programa.
STUDENT : TAYNAH NERI CORREIA CAMPOS
DATE: 09/03/2020
TIME: 11:00
LOCAL: Sala de Reuniões da FACISA
TITLE:

“My Opinion Matters”: Considering the perception of parents for follow-up outcomes for their children with Congenital Zika Syndrome


KEY WORDS:

Congenital Zika Syndrome. International Classification of Functioning, Disability and Health. Children. Outcome measures.


PAGES: 50
BIG AREA: Ciências da Saúde
AREA: Saúde Coletiva
SUMMARY:

Introdution: The Zika Virus (ZIKV) outbreak in Brazil had devasting social, medical and financial consequences. ZIKV in some settings caused severe microcephaly, abnormal brain development, congenital abnormalities, epilepsy, hearing and vision problems. Many researchers and clinicians are now following up the children to understand the impact of the ZIKV on child development, functioning and disability, but outcomes measured are heterogenous, and often; it is not clear how meaningful they are to families and children. Objectives: To identify the parents' perspectives on relevant areas of functioning and disability that should be included as outcome measures for children affected by congenital Zika syndrome (CZS), guided by the International Classification of Functioning, Disability and Health (ICF). Methods: Participants were recruited from child rehabilitation centers in two states in northeastern Brazil. Inclusion criteria: parents of children aged 0 to 6 years with confirmed CZS living in northern Brazil. Overall, 32 participants agreed to participate, 88% were mothers (average age, 30 years). Most of their children were male (59%), all GMFCS level V.  Purposive sampling was used. Interviews were conducted using focus groups. A questionnaire covering the ICF was developed. In addition, visual cards illustrating the ICF categories were used to assist the understanding of the concepts. Saturation was achieved with 6 focus groups. Three raters analyzed the content using NVIVO 11. Agreement between raters was assessed using Kappa (k=90.9). Results: Six focus groups were conducted with 32 caregivers of children with severe neurodevelopmental disorders associated with CZS, including: 68.8% vision problems, 31.3% hearing, 31.3% sleep problems and 34, 4% had epilepsy. Functioning and disability themes were predominantly linked to activities and participation, environemntal factors and body functions. Although parents mentioned areas across all ICF components, they reported that areas of mobility, eating and recreation were very relevant for them. In addition, environmental factors were highly identified as barriers, specifically services, policies and access to assistive devices.  Conclusions: This is the first qualitative study addressing long term outcomes of children with CZS using the ICF coding system in Brazil. Although parents emphasized issues related to mobility, their greatest concerns involved environmental factors, such as access and quality of health and social services, systems and policies. These results reinforce the importance of including the parents' perspective when selecting or developing outcome measures for CZS. Finally, our findings highlight the urgent need for environmental modifications to improve the lives of children with congenital CZS and their families in Brazil.


BANKING MEMBERS:
Presidente - 2218795 - EGMAR LONGO HULL
Interna - 1110960 - JANE CARLA DE SOUZA
Interno - 2218787 - KLAYTON GALANTE SOUSA
Externa à Instituição - KÁTIA SUELY QUEIROZ SILVA RIBEIRO - UFPB
Notícia cadastrada em: 28/02/2020 16:45
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