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Atul Jaiswal, Heather Aldersey, Walter Wittich, Mansha Mirza, Marcia Finlayson; Contextual Factors that affect Participation of Adults with Deafblindness in Indian Society: A Qualitative Study. Invest. Ophthalmol. Vis. Sci. 2018;59(9):1067. doi: https://doi.org/.
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© ARVO (1962-2015); The Authors (2016-present)
People with concurrent vision and hearing impairments, referred to as deafblind, are often overlooked in vision and hearing research. Existing research on deafblindness (Db) has been limited to investigations of characteristics of individuals, their impairments, and its impact using proxies (parents or professionals) to understand the experiences of people with Db. These studies suggest that persons with Db experience participation barriers and social isolation in their lives, yet little has been documented about contextual factors that shape their participation experiences in society. Hence, the present study focused on understanding the contextual factors that affect the participation of persons with Db in society.
We used the International Classification of Functioning, Disability and Health (ICF) as a framework to describe the contextual factors that affect the participation of persons with Db. Sixteen adults with Db (age 18-45 years; 5 female and 11 male; 3 congenital and 13 acquired) from different regions of India were interviewed between March and May 2017 using a qualitative interview guide. Diverse communication modes and accessible formats such as braille, large prints, sign language interpreter and Skype/Facebook were used to interview participants. Data were analyzed using a deductive approach following the ICF linking rules.
Environmental factors that affected the participation of adults with Db were mainly attitude of others towards them, availability of social support (family and friends), availability of opportunities and resources (services and technological aids), and accessibility of built environment and government programmes. Age, gender, communication modes, and self-belief about disability emerged as important personal factors affecting participation. The majority of participants stressed the importance of social support and deafblind-specific services in their life.
Professionals must acknowledge aspects of the environment in delivering assessment and interventions. Knowing how participation is influenced by environment can be used to develop rehabilitation interventions by eye-care professionals. Studies investigating interactions between the person with Db and their environment rather than the impact of impairments would be useful to inform the services designed to enhance the participation of persons with Db in society.
This is an abstract that was submitted for the 2018 ARVO Annual Meeting, held in Honolulu, Hawaii, April 29 - May 3, 2018.
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