Factors that influence the participation of individuals with deafblindness: A qualitative study with rehabilitation service providers in India

Abstract

Evidence to inform rehabilitation service delivery for individuals with deafblindness, especially in the Indian context, is inadequate. Rehabilitation professionals often find it challenging to design rehabilitation interventions that promote participation for those with deafblindness. Therefore, our purpose was to understand the contextual factors that influence the participation of individuals with deafblindness in India from the perspectives of those who are involved in providing rehabilitation services to them. Using the International Classification of Functioning, Disability, and Health (ICF) as a framework, we conducted two focus group discussions with 16 rehabilitation service providers in India. We used a content analysis approach to examine the data. Rehabilitation service providers perceived participation barriers to be linked primarily to the social environment. Specifically, participants identified four major factors acting as barriers, including (a) lack of awareness about deafblindness; (b) negative attitudes and stigma associated with disability; (c) lack of access to resources such as assistive technology and interpreter support; and (d) communication challenges associated with severe impairments. Facilitators include accessibility of the built environment for multisensory impairments, affordable technology, provision of an interpreter and personal support worker, and training on deafblindness for professionals. The participation of individuals with deafblindness could be enhanced by identifying and removing environmental barriers and improving knowledge about deafblindness among rehabilitation professionals for proper identification, assessment, and access to rehabilitation services.

Development of core sets for deafblindness: an international expert survey on functioning and disability of individuals living with deafblindness using the International Classification of Functioning, Disability, and Health

“…Interestingly, these findings are aligned with the results of previous work on functioning of older adults with deafblindness in Canada, 31 and the findings of a study with working-age adults with deafblindness in India. 32 Regardless of the geographical location in the Global North or South, both studies underscored the relevance of the two factors on functioning of individuals living with deafblindness. In contrast, the majority of codes representing outcome measures in the systematic literature review were linked to Products and technology (e1) followed by Natural environment & human-made changes to the environment.…”

Methodological Approaches to Obtaining Informed Consent when Conducting Research With Individuals With Deafblindness

“…Many of the reviewed procedures were developed by members of a team in Canada that has the benefit of collaborating closely with rehabilitation centers, funded by the provincial government, that provide specialized services to this population free of charge (Wittich et al, 2012). Such a network greatly improves the identification and recruitment process and may not easily be replicated elsewhere; however, we have also been able to benefit from similar collaborations in the Global South (Jaiswal et al, 2022a; Jaiswal et al, 2020b; Jaiswal & Gupta, 2016). Furthermore, adults living with deafblindness are a very heterogeneous population (Simcock, 2017; Wittich & Simcock, 2019).…”

The development of the International Classification of Functioning, Disability and Health Core Sets for deafblindness: A study protocol

“…An intervenor/interpreter will be present to help facilitate participation and will receive an orientation session to provide an overview of the research terminologies that will be used. Diverse accessible communication modes (i.e., use of multimedia, large prints, face to face discussion, accessible audio formats) will be used to enable participation in the research and to make questions accessible to participants [ 34 ]. Each focus group will have a moderator and at least one assistant.…”