Families’ experiences and perspectives on the early use of powered mobility in children with spinal muscular atrophy type I in the natural context
Creators: name: Díaz-López, Cristina Isabel
name: Palomo-Carrión, Rocío
name: Romay-Barrero, Helena
name: Pacheco-da-Costa, Soraya
name: Coello-Villalón, María
name: López-Muñoz, Purificación
Publisher: name: Taylor & Francis
Year: 2025
Subjects: subject: Medicine
subject: Neuroscience
subject: Sociology
subject: FOS: Sociology
subject: Science Policy
subject: Mental Health

description: To describe the experiences of parents who used powered mobility in children with Spinal Muscular Atrophy, SMA type I,at an early age in the natural context like a family-centered program, using inductive qualitative content analysis. This qualitative study was embedded within a single-blinded randomized waiting list controlled clinical trial, which involved 16 children with SMA type I. This study specifically explores the experiences of the 9 parents whose children participated in the intervention group and completed the training. The training lasted 12 weeks, 3 weekly sessions of half an hour each in a motorized mobility car. Subsequently, there were 4 weeks of free use, based on the child and family’s interest. The therapist evaluated the learning of powered mobility using the ALP assessment. Parent Interviews were conducted using an interview guide. The results revealed that parents’ learning was supported by powered mobility coaching, leading to acquired knowledge, skills, and competence. Several themes emerged for consideration in early age power mobility applications: motivation, playing, the importance of a family-centered program to enhance adherence to training and family satisfaction and to share decision making. The study concludes that early powered mobility for children with SMA type I should educate, empower, and monitor families to increase the interaction and goal achievement and considering barriers in the child’s context is essential for accessible mobility. <b>Weekly Professional Support</b>:Providing weekly support from a therapist is crucial for families. Regular follow-ups help set functional objectives, address emerging challenges, and establish new strategies. This ongoing professional guidance enhances adherence and ensures the effective implementation of the intervention. Providing weekly support from a therapist is crucial for families. Regular follow-ups help set functional objectives, address emerging challenges, and establish new strategies. This ongoing professional guidance enhances adherence and ensures the effective implementation of the intervention. <b>Assessment of Home Environment</b>:Assessing the home environment to identify barriers and facilitators of powered mobility use is essential. This includes evaluating the accessibility of different areas in the home and making necessary adjustments to facilitate ease of movement for the child. Understanding and mitigating environmental challenges can significantly improve the intervention’s success. Assessing the home environment to identify barriers and facilitators of powered mobility use is essential. This includes evaluating the accessibility of different areas in the home and making necessary adjustments to facilitate ease of movement for the child. Understanding and mitigating environmental challenges can significantly improve the intervention’s success. <b>Customized Device Setup</b>:Ensuring that the powered mobility device is adequately set up to meet the child’s needs requires a thorough assessment with the family. Personalizing the device according to the child’s motor abilities and family’s preferences ensures that it is user-friendly and encourages consistent use. Proper customization supports the child’s independence and engagement. Ensuring that the powered mobility device is adequately set up to meet the child’s needs requires a thorough assessment with the family. Personalizing the device according to the child’s motor abilities and family’s preferences ensures that it is user-friendly and encourages consistent use. Proper customization supports the child’s independence and engagement. <b>Development of Family-Centered Goals</b>:Collaborating with families to develop functional goals that incorporate play and motivation is vital. Goals should be meaningful to both the child and family, fostering a sense of achievement and enthusiasm. This approach not only increases adherence but also enhances the overall experience and outcomes of the intervention. Collaborating with families to develop functional goals that incorporate play and motivation is vital. Goals should be meaningful to both the child and family, fostering a sense of achievement and enthusiasm. This approach not only increases adherence but also enhances the overall experience and outcomes of the intervention. <b>Understanding Components of Early Powered Mobility</b>:Therapists need to have a comprehensive understanding of the components of early powered mobility to implement the intervention correctly. This includes knowledge of the device’s features, how to adapt it for different abilities, and the importance of integrating play and functional goals into the training. Educating families about these components ensures that they can effectively support their child’s use of the device. Therapists need to have a comprehensive understanding of the components of early powered mobility to implement the intervention correctly. This includes knowledge of the device’s features, how to adapt it for different abilities, and the importance of integrating play and functional goals into the training. Educating families about these components ensures that they can effectively support their child’s use of the device.