Participation experiences of people with deafblindness or dual sensory loss: A scoping review of global deafblind literature

Abstract

BackgroundDeafblindness, 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.ObjectiveTo identify and summarize available research literature on participation experiences of people with deafblindness or dual sensory loss.MethodsA 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.ResultsA 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.ConclusionParticipation 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.

Consensus clinical management guidelines for Alström syndrome

“… Every 6–12 months or as per clinical need [ 75 ] Speech and language therapist Assess of the sensorial impairment including speech perception, speech recognition and sound localisation and distance evaluation First referral during childhood Consider implication of sensorial impairment in the communication, social interactions, emotional wellbeing, mobility, assistive technology, habitation and rehabilitation potential. Yearly or as required [ 76 ] Social worker Support of patients and families living with disabilities, who require enhanced resources in the community First referral: from childhood to adulthood As required Expert opinion Patients’ Association Support to patients and their families Facilitate clinic and research First referral at the time of diagnosis As required [ 77 ] …”

Life strategies of people with deafblindness due to Usher syndrome type 2a - a qualitative study

“…They have also been found to be interested in being involved and contributing to society (Hersh, 2013a). A scoping review revealed that participation among people with deafblindness is due to the interaction of personal and environmental factors, but called for studies focusing on lived experiences in order to increase understanding and improve services to enhance participation (Jaiswal, Aldersey, Wittich, Mirza, & Finlayson, 2018).…”

Continuum of Care for Older Adults With Concurrent Hearing and Vision Impairment: A Systematic Review Protocol

“…More research is needed to inform services/policies speci c to meet the needs of the growing population of older adults with DSI. This priority is also re ected in the work of DSI researchers and the recent report by the World Federation of the Deafblind (2018) highlighting the challenges faced by people with DSI, and pinpointed to the risk of exclusion from the implementation of the United Nations Conventions on the Rights of Persons with Disabilities (UNCRPD) and the United Nations Sustainable Development Goals (2,4,32,(34)(35)(36)42). Understanding the current state of the continuum of care for older adults with DSI is paramount to nding ways to promote healthy ageing.…”