Communication Interventions May Help Rett Patients Better Interact
A comprehensive communication intervention package improved the expressive communication and/or visual attention of three women with Rett syndrome, a small study shows.
These findings suggest that the intervention — which combined aided language modeling (ALM), responsive partner strategies, and a gaze-controlled device — may be beneficial for this patient population.
Larger studies are however needed to confirm these findings, the researchers noted.
The study, “Aided language modelling, responsive communication and eye-gaze technology as communication intervention for adults with Rett syndrome: three experimental single case studies,” was published in the journal Disability and Rehabilitation: Assistive Technology.
Rett syndrome is characterized by motor, language, cognitive, and behavioral impairments, among other problems. Due to severe motor and speech difficulties, people with Rett frequently use their eyes to communicate, in addition to expressing themselves through sounds, body movements, and facial expressions.
As such, it is important that Rett patients be able to make use of a robust “vocabulary that meets communication needs in several situations,” the researchers wrote.
Eye-tracking technologies have gained increasing interest not only as a means to improve Rett patients’ communication, but also to assess their cognitive performance. With such tech, users can activate an item on a computer screen by fixating their eyes for a pre-set time on the item chosen.
However, some individuals may have difficulties in controlling eye gaze.
Now, researchers at the Uppsala University, in Sweden, evaluated the effect of an eye-tracking-based communication intervention package on expressive communication and visual attention in three women with Rett syndrome.
None of the women, whose ages ranged from 27 to 31, communicated through speech, instead using eye gaze, body movements, sounds, and facial expressions to communicate. One woman inconsistently and very rarely used spoken words.
While all the women had access to gaze-controlled devices, they did not use them daily for communication purposes.
During the intervention, a specialized communication partner used responsive partner strategies, in combination or not with aided language modeling, during activities in which patients would choose words from a vocabulary list introduced in a gaze-controlled electronic device.
Examples of responsive partner strategies include providing time for responses, looking for potential communicative actions, and responding accordingly. Aided language modeling mainly consists of pointing at picture symbols while speaking to reinforce the connection between a symbol and its meaning.
A calibration of the gaze-controlled device for each patient was made at home before the intervention, which comprised 32 sessions over a six-week period.
Patients’ expressive communication was assessed as the number of words expressed per minute using the gaze-controlled device and the number of unique words per minute, while visual attention was assessed as the rate of focused gazes (one second or longer) in interaction.
After the last session, caregivers and carers who were present during the sessions were informally interviewed to assess their general impression of the intervention and whether they noticed any differences at home that they related to study participation.
The results showed that adding ALM to the sessions did not have a clear effect in all measures, but increased the rate of expression communication in at least one aspect in all participants.
Particularly, the number of unique words per minute was increased in all three women, and the rate of words was increased in two of them when ALM was added. However, no withdrawal effect could be seen when it was removed.
These findings indicate that “responsive partner strategies and access to the gaze-controlled device alone seemed to be effective for increasing the rate of synthesized utterances,” the researchers wrote.
Adding ALM to the sessions also improved visual attention in one participant — the one with greatest eye motor control difficulties — but it had no effect in the other two, whose visual attention showed an overall tendency to reduce.
“One possible explanation is that the outcome measure is more sensitive for individuals that have difficulties to shift gaze focus,” the researchers wrote, adding that rate of focused gazes “may be considered as an outcome measure for individuals with oculomotor difficulties when introducing aided language modelling.”
The communication intervention also appeared to be socially important and appropriate. It was appreciated by the caregivers and carers, and was reported to result in increased use of eye-gaze devices at home for communication purposes, and in positive effects in the patients.
Overall, the findings suggest that aided language modeling, combined with responsive partner strategies and a gaze-controlled device, “may be used with adult individuals with Rett syndrome to increase their rate of expressive communication,” the team wrote.
“Considering the life-long need for communication support for individuals with Rett syndrome, and the paucity of research in the area, further communication intervention studies are crucial for this group,” the researchers concluded.