Deafblindness

Abstract: Background Deafblindness, also known as dual sensory loss, is a varying combination of visual and hearing impairment in the same individual. Interest in this topic has increased recently due to evidence suggesting an increase in prevalence of this condition among older adults. Persons with deafblindness frequently experience participation barriers and social isolation. Developing an understanding of their experiences can inform the design of programs and policies to enhance participation of people with deafblindness in society. Objective To identify and summarize available research literature on participation experiences of people with deafblindness or dual sensory loss. Methods A comprehensive literature search of eight databases (CINAHL/EBSCO, Embase, ERIC, Global Health, MEDLINE, ProQuest, PsycINFO, PubMed) was performed in accordance with the Preferred Reporting Items for Systematic Reviews (PRISMA) during January 2017 and last updated in June 2017. In addition, non-peer reviewed (grey) literature was also retrieved in the form of online published reports of research projects by 16 deafblind-specific organizations across the globe. To be included, sources had to be published after 1990, had persons with deafblindness as the focal population, and focused on their participation experiences. Results A total 1172 sources were identified of which 54 studies were included. The findings reveal that persons with deafblindness, regardless of origin of their impairment, experience difficulty in communication, mobility, daily living functioning, and social interactions. While these experiences may vary between individuals with congenital versus acquired conditions, they generally feel socially isolated, insecure and uncertain about their future. Conclusion Participation experiences of persons with deafblindness are shaped by dynamic interactions between personal factors (such as onset and type of impairments) and environmental influences (such as attitude, technology, and supports). A better understanding of participation experiences may help professionals in placing emphasis on affected participation domains to design services to enhance participation of people with deafblindness.

Abstract: Most children who are congenitally deafblind are severely delayed in their communication development and many will not achieve symbolic understanding and expression. This article discusses developmental markers cited in the research literature as predictive of or facilitative of the development of symbolism. These markers include the growth toward more abstract representations, the rate of intentional communication, joint attention to objects and others, achievement of abstract play, consonantal and interactive vocalisations, distal gesture, varied early vocabulary and categories, use of varied cues for recall, object permanence, 1:1 correspondence, cause–effect, discrimination skills, and imitation. The impact of congenital deafblindness on the achievement of these milestones is presented, along with compensatory strategies to support the child’s development.

Abstract: Background In persons with deafblindness, it is hard to distinguish autism spectrum disorders from several deafblind specific behaviours caused by the dual sensory impairments, especially when these persons are also intellectually disabled. As a result, there is an over-diagnosis of autism in persons who are deafblind leading to unsuitable interventions. Methods Autism as specified by the DSM-IV was studied in 10 persons with congenital deafblindness with profound intellectual disabilities. Behaviours of people with deafblindness and autism (n = 5) and of people with deafblindness without autism (n = 5) were observed in a semi-standardised assessment. Results All people with deafblindness showed impairments in social interaction, communication and language. In contrast to persons without autism, people with deafblindness and autism showed significantly more impairments in reciprocity of social interaction, quality of initiatives to contact and the use of adequate communicative signals and functions. No differences between the groups were found for quantity and persistence of stereotyped behaviour, quality of play and exploration and adequate problem-solving strategies. Conclusions This study indicates that there are some possibilities to differentiate autism from behaviours specific for deafblindness. It also confirms the large overlap in overt behaviours between people with deafblindness and persons with autism.