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

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 RehabilitationA 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.

Case Report: Effect of a Retinal Prosthesis System on Charles Bonnet Visual Hallucinations.

SIGNIFICANCE: Charles Bonnet syndrome is commonly encountered and diagnosed in low-vision patients. It can be distressing for some of them, as there is no known effective treatment of this condition. Although there is a growing interest in retinal implants for blind patients with severe retinal diseases, the effect of these devices on Charles Bonnet syndrome visual hallucinations remains undocumented. PURPOSE: The aim of this study was to report changes in the Charles Bonnet syndrome of a patient with retinitis pigmentosa after implantation of the Argus II retinal prosthesis. CASE REPORT: A 65-year-old patient with retinitis pigmentosa and no light perception was frequently experiencing Charles Bonnet syndrome. In the hope of improving his vision, he received an Argus II retinal prosthesis in 2018 and participated in a 10-week rehabilitation program at the Institut Nazareth et Louis-Braille. The nature and the frequency of his Charles Bonnet syndrome were documented with the Questionnaire de repérage du syndrome de Charles Bonnet (a French questionnaire used to screen for Charles Bonnet syndrome) before the surgery and for 70 weeks after it. The patient's visual acuity and visual fields were monitored during the same period. Additional tests were administered to document the visual, psychological, and cognitive states of the patient throughout the study. CONCLUSIONS: Although this case report confirmed that Argus II retinal prosthesis improves the performance of blind patients in visual tests, the improvement was not associated with a decrease in the symptoms of Charles Bonnet syndrome.

Charles Bonnet syndrome: development and validation of a screening and multidimensional descriptive questionnaire.

OBJECTIVE: The purpose of this study was to develop a French Canadian questionnaire for the detection of Charles Bonnet syndrome that allows for (i) valid screening and (ii) the examination of different dimensions of the client's visual hallucinations in order to better assess the resulting needs. METHOD: Questionnaire development was guided by interviews with visually impaired individuals experiencing visual hallucinations, as well as supported by scientific literature and expert experience. A clinical study involving 76 individuals with low vision was conducted to determine the sensitivity and specificity of the instrument according to criterion validation. RESULTS: Of the 54 closed-ended questions, a subset of 11 revealed a sensitivity of 1.00 and a specificity of 0.77. Two additional questions showed high discriminating potential. Improvements to the wording and structure of some questions aiming at needs assessment were identified and applied. The improved version consists of 55 questions grouped in 8 dimensions: (1) Screening; (2) Characteristics of hallucinations; (3) Psychological impact; (4) Psychopathological origin; (5) Coping strategies; (6) Context of appearance of hallucinations; (7) Time-related matters; (8) Psychosocial support. The screening is operationalized through an algorithm applied to the set of 13 questions. CONCLUSION: The questionnaire will be a valuable aid in screening for Charles Bonnet syndrome among the low vision clientele. However, the screening will need to be supplemented by a focused low vision interdisciplinary assessment including a visual examination and a clinical interview with a psychologist.