Experiências de crianças com Síndrome Congênita do Zika durante a utilização da mobilidade motorizada: um estudo qualitativo usando o método Photovoice

Abstract

Introduction: Most children with congenital Zika syndrome (CZS) have severe motor impairment, with no prognosis for independent walking. Although mobility is a human right, many children with disability do not have an independent means of locomotion. Early motorized mobility with motorized toy cars has been indicated for young children with severe motor impairment, as it allows independent locomotion in various environments. The benefits of early powered mobility include gains in body function, activity and participation, as well as contributing to social skills and self-esteem. Therefore, the aim of this study was to explore the perception of mothers of children with SCZ about their children's experiences while using toy cars at home and in the community. Methods: This Participatory Action Research (PAR) was carried out using the photovoice method and obtained ethical approval with opinion number 3.980.703/2020. The mothers of four children with SCZ, participants in the “Go Zika Go” intervention project, were included in the study. The research began with the distribution of modified toy cars for use at home and in the community and included six steps: 1) Presentation of the guide questions and training to use Photovoice; 2) Capture of photos by the participants; 3) Individual interview to contextualize the photos; 4) Transcription and analysis of data, using the principles of thematic analysis; 5) Validation of analyzes by mothers; and, 6) Exhibition of photos to the community. All steps were carried out remotely, with the exception of the exhibition, which was held at UFRN-Facisa. Results: Mothers and researchers selected the 21 most relevant photographs. Five main themes emerged from the analyzed data, related to the use of motorized toy cars: 1) Experiences of participation, 2) Independence in mobility, 3) Characteristics of mobility devices, 4) Family support and, 5) Accessibility of the environment. Faced with the experiences of participation experienced during the use of motorized toy cars, the mothers addressed aspects such as greater socialization, involvement and participation in games and the expression of feelings such as happiness. Regarding independence in mobility while using cars, experiences of autonomy, functional capacity when activating and guiding the device and the freedom provided during these experiences were emphasized. Regarding the characteristics of mobility devices, some of the mothers mentioned that the adaptations made to their children's strollers facilitated their use, such as the seat belt, while others were not satisfied, mentioning discomfort of the children during prolonged use. As for family support, the availability of time was approached as a limiting factor for the use of cars, although their use favored the interaction of children with their families. Finally, the accessibility of the environment was considered an important barrier to the use of cars in the community, unlike the physical space of the homes, where such problems were not reported by the mothers. Conclusion: The participants' narratives, associated with photographs of the daily lives of children with SCZ, elucidated aspects of functionality, autonomy and participation, reinforcing the importance of independence provided by motorized mobility for children with severe motor impairment. The use of these devices favors equity in its entirety, favoring the breakdown of social and cultural barriers, allowing children with disabilities to be seen as equals by other children