RESUMO
AIM: The congenital Zika Syndrome (CZS) often leads to severe motor impairment in affected children, making independent walking unlikely. Early introduction of motorized mobility through ride-on cars has been recommended for young children with severe motor impairment, enabling independent movement in various environments. This study aims to explore mothers' perceptions of their children's experiences while using ride-on cars at home and in the community, focusing on children with CZS. METHODS: This is a qualitative and descriptive study design using the Photovoice method. Four mothers of children with CZS, participating in the 'Go Zika Go' intervention project, were included. The research involved the following six steps: 1) Presentation of guide questions and Photovoice training; 2) Participants capturing photos; 3) Individual interviews to contextualize the photos; 4) Transcription and data analysis using thematic analysis principles; 5) Validation of analyses by mothers; and 6) Exhibition of photos to the community. RESULTS: The mothers and researchers selected the 21 most relevant photographs, which revealed five main themes related to the use of motorized ride-on cars: 1) Experiences of participation; 2) Independence in mobility; 3) Characteristics of mobility devices; 4) Family support; and 5) Accessibility of the environment. CONCLUSION: The narratives provided by participants, along with photographs depicting the daily lives of children with CZS, shed light on aspects of functionality, autonomy, and participation. The use of these devices contributes to overall equity, breaking down social and cultural barriers and enabling children with disabilities to be seen as equals by their peers.
To understand the barriers and facilitators experienced by children with Congenital Zika Syndrome (CZS) when using motorized ride-on cars at home and in the community can contribute to the planning of interventions aimed at implementing motorized mobility as an intervention modality for children with severe motor and cognitive impairments in low- and middle-income countries.The Photovoice method can be useful to capture the experiences of children with severe disabilities such as Congenital Zika Syndrome while using adapted motorized ride-on cars.Involving mothers of children with severe disabilities as co-researchers can contribute to the advancement of more relevant research for the public/patient, considering that they are specialists by knowledge.The use of motorized mobility for children with CZS can minimize social disadvantages, favor equity in its entirety, providing for the breakdown of cultural and attitudinal barriers.
RESUMO
PURPOSE: To explore the feasibility of an intervention using modified ride-on cars in terms of acceptability and potential changes in goal attainment, mobility, social function, and participation of children with Congenital Zika Syndrome (CZS). MATERIALS AND METHODS: A pre- and post-intervention feasibility study was conducted with children with CZS, levels IV and V of the Gross Motor Function Classification System (GMFCS). The intervention consisted of 12 weeks of training (3 times a week for 40 min per session) and 4 weeks of follow-up. The primary outcomes included adherence, satisfaction, and learning in mobility. Secondary outcomes encompassed goal attainment, mobility, social/cognitive function, and participation. Descriptive statistics were performed. To explore potential individual changes with the intervention, Wilcoxon test was used to analyze Pediatric Evaluation of Disability Inventory - Computer Adaptive Test (PEDI-CAT) data and Young Children's Participation and Environment Measure (YC-PEM)/Participation and Environment Measure for Children and Youth (PEM-CY), along with standard error measurements of the PEDI-CAT domains. RESULTS: Four children participated (median age 4.75 years; two females: three at level V on the GMFCS). Adherence was 75% of the total intervention time, and family members reported being satisfied or very satisfied. Children showed gains in learning the use of the modified ride-on cars and an increase in goal attainment after the intervention. Individual changes were observed in the PEDI-CAT domains (mobility and social/cognitive), but there were no significant changes in participation outcomes. CONCLUSIONS: Children with CZS at GMFCS levels IV and V can learn to use motorized ride-on cars, attainment goals, and experience satisfaction.
Motorized mobility for children with Congenital Zika Syndrome and severe physical and cognitive disabilities is feasible and can encourage future interventions focused on activities and participation.This research contributes to the understanding of the potential changes that motorized mobility can have on goal attainment, satisfaction, and learning.Motorized mobility can be a means to enable children with Congenital Zika Syndrome to have opportunities for participation and guarantee their rights.
