Crianças com síndrome congênita do Zika vírus, aos 24 meses de idade: comorbidades, desenvolvimento motor grosso e percepção de mães e profissionais sobre a reabilitação

Abstract

This thesis aimed to evaluate the gross motor development of children with Congenital Zika virus Syndrome (CZS), at 24 months of age, and sought to understand parents ' as well as professionals' perception on the rehabilitation of such children. It was organized into two studies, a quantitative study (study 1) and another one with a qualitative method (study 2). Study 1 was a cross-sectional study that aimed to characterize the gross motor function in a group of Brazilian children with (CZS) at 24 months of age and to evaluate the association between comorbidities and gross motor development of such children. The participants were 50 children with CZS. Part of the collection was carried out from information search in maternal, medical and clinical records and from the baby at birth, including the children gross motor function classification through Gross Motor Function Classification System (GMFCS). The gross motor development of the children was evaluated at 24 months by the protocol Gross Motor Function Measure (GMFM-88). The results showed that 70% of the children were classified in level V of GMFCS, 26% in level IV, and only 2% in levels I and II. As for the GMFM, the median A dimension (lying down and rolling) was (Md = 8; IQ = 5-14) and dimension B (sit) (Md = 6; IQ = 3-9), in the dimensions C, D and E the median was zero. Presence of comorbidities such as dysphagia and epilepsy, plus dimensions A and B of GMFM 88 contributed to the composition of three clusters with significantly different gross motor performance. Cluster 2 children, with better motor development, had no dysphagia or epilepsy. Presence of comorbidities in these children seems to negatively influence gross motor development at 24 months. Study 2 aimed at understanding the perception of parents / caregivers about the rehabilitation of children with CZS. This is a case study with a qualitative approach. Nine mothers and two grandparents of children with CZS and 13 professionals, including physiotherapists, occupational therapists, speech therapists, social workers and psychologists took part in this study. We used the focus group technique to collect information with parents and professionals and the Bardin content analysis method to analyze the respective discourses. The categories that emerged were organized and based on the theoretical reference: Family Adjustment and Adaptation Response (FAAR). The results showed that mothers and grandmothers rely on capacities to try to get the family balance against care demands and imposed by the rehabilitation of the children. The professionals were committed to implement changes in their behavior by adopting intervention based on family-centered practice, which had a positive impact in bringing professionals closer to the families. The results of this thesis provide evidence on the gross motor development of children with CZS at 24 months of age, and contribute for understanding the rehabilitation of these children from the perspective of professionals and families.