Augmentative and alternative communication in individuals with Rett syndrome : A survey for family members

Abstract

Rett syndrome is a rare genetic mutation that is diagnosed to 50–100 people in Finland. Rett syndrome causes varying degrees of intellectual disability and usually severe motor disability that both complicate communication. After a phase of typical development for approximately 6–18 months the learned motor skills, speech, and communication abilities begin to regress, and purposeful hand use is replaced with stereotypies, repetitive movements. Individuals diagnosed with Rett syndrome can benefit from augmentative and alternative communication (AAC). AAC can improve a person’s communicative competence that includes linguistic, operational, social, and strategic competences.

The aim of this Master’s thesis is to examine how AAC is used in families including an individual with Rett syndrome and what factors influence the success of the communication situations. This study was a survey study. The respondents were volunteers that had a family member diagnosed with Rett syndrome. The online survey was sent through Rett ry to the members, and 10 people responded anonymously. The questionnaire included both multiple-choice questions and open questions. The quantitative information from the multiple-choice questions was used as it was to describe the study participants, and the qualitative information produced by the open questions was analyzed to answer the research questions. The analysis method for the qualitative material was reflexive thematic analysis. The analysis was inductive, and the material was examined using an experiential and essentialist approach, so the emphasis was on depicting the respondents’ individual experiences and their reality.

The qualitative analysis of the material produces four themes: 1. Situations, 2. Eye gaze, 3., Communication partner, and 4. Environmental support. Themes 1 and 2 described the AAC methods used by the families, and themes 3 and 4 the factors influencing the success of the communication situations. AAC enabled communication between the respondents and their family members in various contexts and different functions. The most common AAC methods the respondents used with their family member were eye gaze, body movement and different aids. The most common communicative functions AAC enabled were making choices, answering yes and no questions, requesting, and expressing pain. The respondents’ family members’ communicative competence was extremely variable. A distinctly frequently mentioned single communication method was eye gaze both as unaided and aided AAC forms. The success of AAC was influenced by the motivation and familiarity of the communication partner and environmental support. Environmental support meant the places and people outside home, such as kindergarten, school, and the professionals working the respondents’ family members. Environmental support was seen as a promoting factor for AAC. However, the respondents additionally recognized that only an engaged environment supports the success of AAC. The respondents were mostly content with the support they had received from professionals, but they wished for more support with the technological operation of aids and their personalization. Peer support from other families that include an individual with Rett syndrome was mentioned as a factor that motivated the respondents.

This study offers perspectives to how individuals with Rett syndrome can be offered more efficient communication methods. The study adds knowledge about the syndrome and AAC, and the results can be used as guidelines for professionals, family members, and other people to help communication when the conversation partner has Rett syndrome.