Mothers of children with severe motor disabilities such as spinal muscular atrophy (SMA) can achieve typical parent-child relationships with the help of augmentative and alternative communication (AAC). Furthermore, physicians should guide parents in the use of AAC to create emotionally available interactions, according to a recently published study in Augmentative and Alternative Communication.
According to attachment theory, emotional availability is of utmost importance in the development of parent-child relationships. Unfortunately, there is scarce literature regarding emotional availability in parent-child interactions, including children with complex communication needs due to motor disorders. The few available studies on the subject suggest that even with AAC, parents and children with severe motor disabilities might experience difficulties forming emotionally available interactions.
The authors aimed to assess the emotional availability and the role of AAC in 3 mothers and their children with SMA who could not speak. Researchers used standard observations of mother-child interactions to gather data for quantitative emotional availability scales. The qualitative part of the study was carried out through semi-structured interviews with the mothers containing 12 open-ended questions.
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Results from emotional availability scales revealed that all the mothers were sensitive, meaning they could accurately interpret communications from their children and respond to them adequately and in a timely manner. One mother showed brief and covert hostility, and the others were considered hostile. All 3 children were responsive and invited the parents to participate in the play.
All mothers reported that their children had spontaneously found ways of communicating before being introduced to AAC and expressed their satisfaction due to the capacity of their children to communicate with others using AAC. The mothers said their children were able to express needs, create emotional closeness, share information and experiences, and have social participation.
However, the mothers also had concerns regarding AAC, such as a gap between the cognitive development of their children and the ability to communicate with AAC. They also noted barriers, such as limited vocabulary, slowness, and limited portability, that could lead to communication failures.
“The results of this pilot study provide initial encouraging evidence that emotional availability is possible even with children with profound motor disability and a limited ability to communicate needs and desires and share personal experiences,” the authors concluded.
Shahar-Lahav R, Sher-Censor E, Hebel O. Emotional availability in mothers and their children with spinal muscular atrophy type 1 who require augmentative and alternative communication: a mixed-methods pilot study. Augment Altern Comm. Published online October 26, 2022. doi:10.1080/07434618.2022.2124928