Meaning and experiences of participation: a phenomenological study with persons with deafblindness in India

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.