Participação ativa das famílias no co-desenvolvimento de como usar o carro motorizado no ambiente domiciliar com crianças com deficiência

Abstract

INTRODUCTION: The term Patient and Public Involvement (PPI) in research refers to the practice of involving patients and members of the public in research, not only as participants but as active partners. This practice is fundamental to ensuring that the voices of the public and patients are heard and that their experiences contribute directly to the development of relevant research. Children with disabilities who have limitations in independent mobility may manifest socioemotional, cognitive, and spatial difficulties. Motorized mobility is a recent technological advancement, achieved through the use of motorized wheelchairs or battery-powered toy cars, and can be considered a way for children with disabilities to explore mobility at ages and stages similar to their peers without disabilities. A project that has been very successful in the United States and is spreading around the world is the Go Baby Go project, which developed an adaptation of commercially available electric cars so that children with disabilities can propel them using different types of sensors, thus allowing environmental exploration, socialization, fun, and play. At the Federal University of Juiz de Fora, the “ADAPT Project – promoting mobility for children and adolescents with disabilities” has the same purpose, using low-cost resources. OBJECTIVE: To have the active participation of families in the co-development of how to use a motorized car in the home environment with children with disabilities who do not walk independently. METHODS: This is a descriptive study with a qualitative methodology carried out with the caregivers of the children participating in the ADAPT Project, through interviews. These were conducted via video call, with open-ended questions, recorded, fully transcribed, and coded through thematic analysis and the use of IRaMuTeQ software, using Descending Hierarchical Classification. The interview script was co-developed between researchers and three mothers participating in the ADAPT Project, who added new questions and validated the pre-existing ones. RESULTS: This study included the participation of eight mothers and one grandmother, where the interviews were conducted through three focus groups, one composed of three participants and two composed of two participants, in addition to two individual interviews. The average duration of the interviews for the focus groups was 40 minutes, while for the individual interviews it was 15 minutes. The thematic analysis revealed four main themes: access to information, limitations of use, emotional impact, and family support. The Descending Hierarchical Classification (DHC) data distinguished four classes. Class 1, named Environment, presented 23.68% of the Text Segments (TS), class 2, named Positives and Negatives, represented 20.40% TS, followed by class 3, named Monitoring, with the highest number of TS, corresponding to 28.46%, and finally class 4, named Routine, with 27.46% of the TS. The e-book entitled "Guide to Motorized Mobility at Home" was developed following suggestions from two mothers who highlighted the importance of caregivers receiving prior information to avoid feelings of frustration if the family reality does not fit the specifics of stroller use. DISCUSSION: Social networks and healthcare professionals were fundamental in providing initial information about the project. The main reported benefits were increased autonomy, socialization, and emotional well-being of the children, as well as improved cognition. Among the barriers, the physical characteristics of the stroller and the emotional overload experienced by mothers stand out. The hybrid model of family support (online and in-person) was positively evaluated for its flexibility, as was the suggested weekend stroller use routine. CONCLUSION: The results show that, despite the challenges faced by families, motorized mobility contributes to the overall development and well-being of the child. However, it is essential to develop strategies that consider the daily reality of the family to promote adherence to the use of the motorized stroller.