Participation of Persons with Deafblindness in India
Worldwide research on deafblindness is sparse, particularly in low and middle-income countries such as India. Persons with deafblindness often experience participation barriers. Yet little is known about their lived experience of participation, influencing factors, and ways to enhance it. To address this evidence gap, this phased study aimed to synthesize evidence on the participation experiences of persons with deafblindness (Phase 1); to understand what participation means to persons with deafblindness in India (Phase 2); and to describe the contextual factors that influence the participation of persons with deafblindness from the perspectives of those with deafblindness and their service providers (Phase 3). To fulfill the aims, I conducted scoping review in Phase 1, and qualitative interviews with 16 persons with deafblindness and two focus group discussions with 16 professionals in Phases 2 and 3. Interviews and group discussions were guided by the International Classification of Functioning, Disability and Health. The understanding of participation experiences and influencing contextual factors suggest ways to enhance the participation of persons with deafblindness. Findings indicate 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 fulfil aspirations and responsibilities, and to feel included and recognized in society. Life domains that persons with deafblindness value for participation were access to information, communication, mobility, relationships, education and productivity, and recreation and leisure. Resources, such as deafblind-specific rehabilitation services, alternative communication modes, and technology/aids (e.g., hearing aids, cochlear implants, refreshable braille displays, and magnifiers) were helpful in improving access to information, communication and social interactions, and thus important for enhancing participation. Results suggest that rehabilitation services and policies must be designed to focus on life domains that persons with deafblindness value. It is also important to address environmental barriers such as lack of awareness about deafblindness among the public, negative societal attitudes, and limited resources to support the participation of those with deafblindness.