Meaning and experiences of participation: a phenomenological study with persons with deafblindness in India. Issue 18 (27th August 2020)

• Record Type: Journal Article
• Authors: Jaiswal, Atul; Aldersey, Heather M.; Wittich, Walter; Mirza, Mansha; Finlayson, Marcia
• Is Part Of: Disability and rehabilitation. Volume 42:Issue 18(2020)
• Page Start: 2580
• Page End: 2592
• Publication Date: 2020-08-27
• Subjects: Participation -- experiences -- deafblindness -- dual sensory loss -- ICF -- phenomenology -- qualitative research -- developing nations; People with disabilities -- Periodicals; Rehabilitation -- Periodicals; 617.03
• DOI: 10.1080/09638288.2018.1564943
• Languages: English
• ISSNs: 0963-8288

Abstract

Abstract: Purpose: Deafblindness, also known as dual sensory loss, creates a distinct condition more disabling than either deafness or blindness alone. The participation experiences of persons with deafblindness have not been understood well. This phenomenological study aims to understand the meanings of participation for persons with deafblindness and identify the domains of life that are important to them. Methods: We used the International Classification of Functioning, Disability and Health as a guiding framework. Sixteen adults with deafblindness were interviewed between March and May 2017 in India using a qualitative interview guide. Results: Findings suggest participation as a dynamic, individualized construct that is not just an end outcome. Rather, it is a means to achieve other goals important to the participants such as gaining respect, autonomy, independence, support and relationships, to fulfill aspirations and responsibilities, and to feel included and recognized in society. Life domains that they deemed important for participation were communication and access to information, mobility, relationships, education and productivity, and recreation and leisure. Conclusions: In order to enhance societal participation of people with deafblindness, a significant change in the focus of rehabilitation services is required which involves professionals viewing participation as both a means and an end outcome while designing interventions.