Setup by a person with deafblindness of a face-to-face communication assistive technology based on generally available applications

Abstract

Purpose

This article describes and analyses the journey with technology of a woman with deafblindness, from her first experiences with communication assistive devices (CADs) until the setup of her homemade CAD. More specifically, it describes the homemade CAD setup, reports on her journey with technology until the setup, and examines the setup process and its outcomes in terms of user innovation and changes in life domains.

Materials and Methods

This is a case study report derived from a previous assessment study. It was documented on the basis of meetings, operation sessions, literature searches, clinicians’ memories as well as observations, impressions, stories and interviews from previous field visits. Analyses were performed based on von Hippel’s description of the user innovation process and the Activities and Participation domains of the International Classification of Functioning, Disability and Health (ICF). The participant in this case study was a female client of a deafblindness rehabilitation program in the Montreal region, living with type 1 Usher syndrome.

Results and Conclusions

The homemade CAD setup was based on an electronic braille notetaker connected to an iPhone via Bluetooth. The software included the iOS operating system, the VoiceOver screen reader and a text editing application, all running on the iPhone. The examination of the participant’s journey found the presence of the four characteristics of the user innovator proposed by von Hippel. It appears that the participant’s life has been positively impacted by the use of her homemade CAD on the nine “Activities and Participation” domains of the ICF.

Implications for Rehabilitation

• A CAD may make it easier to achieve some rehabilitation goals with respect to social participation.

• A person with deafblindness who becomes more autonomous with communications requires less support from rehabilitation professionals.

• An iPhone-based CAD provides access to a normalizing life and results in better self-esteem, among other things.

• Lead users facilitate future professional interventions in the field by providing positive experiences and successes that make the general public aware of the situation of persons using special technologies.

Keywords:

• Deafblindness
• dual sensory loss
• iPhone
• braille notetaker
• user innovation
• assistive face-to-face communication technology
• activities and participation

Acknowledgements

The research team members wish to express their deep gratitude to their participant patient and co-author, Nicole Durocher (Mrs. D), first for welcoming them into her home, meeting after meeting, and second for her exemplary participation in the assessment study and her insatiable curiosity about connected devices. They also wish to thank Suzanne Trudeau, who participated in the assessment study and who shared her reflections and experience as a clinician during the writing of this article.

Disclosure statement

The authors report no conflicts of interest.

Additional information

Funding

Th

is work was entirely supported by the Institut Nazareth et Louis-Braille du CISSS de la Montérégie-Centre.