Families' experiences and perspectives on the early use of powered mobility in children with spinal muscular atrophy type I in the natural context.

Abstract

Purpose: 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.

Materials and methods: 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.

Results: 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.

Conclusion: 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.