Emotional availability in mothers and their children with spinal muscular atrophy type 1 who require augmentative and alternative communication: a mixed-methods pilot study.

Abstract

Emotional availability in parent-child interactions fosters children's socioemotional development. Little is known about the emotional availability of parents and children with profound motor disabilities and complex communication needs or the contributions of augmentative and alternative communication (AAC) to emotional availability. To begin addressing these gaps, this pilot study focused on three mothers and their children with spinal muscular atrophy Type 1 who could not speak and required AAC. The study used a mixed-methods design. Mother-child interactions were rated using the Emotional Availability Scales. Semi-structured in-depth interviews with the mothers were qualitatively analyzed. Emotional availability in mother-child dyads was adequate. In the interviews, mothers addressed significant challenges but described mainly typical parent-child relationships and adaptive child and mother coping attributable to the use of AAC. Results suggest that emotional availability is possible and can be facilitated by AAC, even with children with profound motor disabilities and limited ability to communicate needs and desires. The findings highlight the importance of targeting children's socioemotional needs and parent-child emotional availability in AAC interventions with families of children with profound motor disabilities.