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

Jaiswal, Atul; Aldersey, Heather Michelle; Wittich, Walter; Mirza, Mansha; Finlayson, Marcia

doi:10.1080/09638288.2018.1564943

Cited by 9 publications

(8 citation statements)

References 59 publications

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“…Previous work by members of our team has explored the concept of social participation in older adults' with a single impairment (Fraser et al, 2019a). In addition, we have explored combined sensory loss with specific focus on the perspective of working-age adults (Jaiswal et al, 2018(Jaiswal et al, , 2019a; however, few studies have focused specifically on older adults with DSI in this context (McDonnall and Capella-McDonnall, 2009;McDonnall et al, 2016).…”

Section: Introductionmentioning

confidence: 99%

Barriers and Facilitators That Influence Social Participation in Older Adults With Dual Sensory Impairment

2020

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Introduction: The proportion of older adults with combined acquired vision and hearing impairments (referred to as Dual Sensory Impairment/DSI) is growing, and their unique care needs are beginning to receive increased attention. Considering the age-related demographic shift, one million older adults in Canada are expected to experience DSI by 2036, and evidence suggests that DSI is associated with communication difficulties, cognitive decline, depression, functional decline, and participation challenges. Given that the goal of sensory rehabilitation is to improve participation, the study explored perceived contextual barriers and facilitators of social participation among older adults with DSI to better understand their lived experience. Methods: The International Classification of Functioning, Disability and Health (ICF) was used as a framework to identify and describe the contextual factors (environmental and personal) that influence the social participation of older adults with DSI. Sixteen older adults with DSI (mean age = 86 years, SD = 7; 9 female; registered with an urban sensory rehabilitation organization) were interviewed using a semi-structured qualitative interview guide. Interviews were audio-recorded, transcribed, and then analyzed using a content analysis approach. Results: Environmental factors, such as societal attitudes toward disability, access to technology aids, and availability of transportation services emerged as the most important factors influencing participation. The onset and type of the impairments and attitude toward one's disability were important personal factors affecting the participation. The availability of social support and the use of assistive devices (e.g., magnifiers, glasses, and hearing aids) were reported to be facilitators. In contrast, the inaccessibility of the built environment and the cost and limited availability of accessible transportation were key barriers to their social participation.

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Section: Introductionmentioning

confidence: 99%

Barriers and Facilitators That Influence Social Participation in Older Adults With Dual Sensory Impairment

2020

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“…34 35 Individuals living with deafblindness have expressed multiple difficulties when it comes to the use, maintenance and usability of assistive devices and many have reported that simply knowing about the existence of possibly useful deceives can be a barrier, 6 with lack of access to technology impeding independence and social participation. [36][37][38][39] For the devices they do obtain, maintenance and care has not always been accomplished easily. 6 IDENTIFYING BARRIERS USING A CONCEPTUAL FRAMEWORK When focusing on functionality and usability issues for people living with deafblindness, a multifaceted approach might be necessary in order to understand the contributions of multiple relevant concepts.…”

Section: Participatory Action Approach To Removing Barriersmentioning

confidence: 99%

Device abandonment in deafblindness: a scoping review of the intersection of functionality and usability through the International Classification of Functioning, Disability and Health lens

et al. 2021

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ObjectivesAbandonment of vision, hearing or mobility aids suggests common barriers and facilitators to ongoing device use. However, the possible interactive effects of combined hearing and vision disabilities on device use by those living with deafblindness are unclear. Here we summarise existing knowledge on variables influencing assistive technology use from the perspective of persons living with deafblindness. We used the WHO’s International Classification of Functioning, Disability and Health (ICF) framework to contextualise the findings, asking ‘What is currently known about variables influencing the (non-)use of assistive devices recommended for persons with deafblindness?’DesignA scoping review followed the Preferred Reporting Items for Systematic Reviews and Meta-Analyses extension for Scoping Reviews Checklist.Data sourcesPubMed; ProQuest: ERIC; ProQuest Dissertation; ProQuest: Sociological Thesaurus; Web of Science; Scientific Electronic Library Online; Bielefeld Academic Search Engine; Pascal & Francis; APA PsycINFO and Ebsco for CINAHL were searched through 9 November 2020.Eligibility criteriaWe included peer-reviewed studies that reported on assistive technology, device abandonment/utilisation and provided data from persons living with deafblindness.Data extraction and synthesisFour team members independently scored 83 studies for eligibility.ResultsTen articles were chosen for data extraction. The emerging variables replicated established categories of barriers and facilitators: personal, device-related, environmental and intervention variables. The use of the ICF highlighted how an intermediate variable (eg, device acceptability) was necessary in order for a variable to become a barrier or a facilitator to device use.ConclusionsThe variables influencing device use by persons with deafblindness followed the same categories described for single impairments. Usability was challenged in devices that rely on the ‘other’ sense. Haptic and tactile aids are rarely studied. The limited available information and the dire need for assistive technologies for people with deafblindness emphasises the urgency of research and technology development for this marginalised population.

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“…Some of the presenters took a research perspective on the pandemic, pointing at facilitators, barriers and priorities that need to be considered. Based on his previous work in social participation and deafblindness (Jaiswal et al, 2018(Jaiswal et al, , 2020, Jaiswal presented a collaborative possibility for citizen engagement and international team building. The goal of this proposal was to identify common research priorities that may now emerge as a result of the pandemic and that can be addressed globally in collaboration.…”

Section: Researchmentioning

confidence: 99%

Living with deafblindness during COVID-19: An international webinar to facilitate global knowledge translation

Wittich

Nicholas

Damen

2021

British Journal of Visual Impairment

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Arguably, individuals living with deafblindness are among the hardest hit by the effects of the corona virus disease of 2019 (COVID- 19), given the importance of the sense of touch for their ability to interact with the world. To address this challenge, it is imperative to facilitate the implementation of evidence- and experience-based recommendations, and to improve knowledge translation on a global scale. Deafblind International organized a webinar to provide a platform where participants could exchange experiences and solutions to overcome the challenges created by the arrival of COVID-19, in order to facilitate information exchange among stakeholders in deafblindness during this pandemic. We present an overview of its content here and place the summarized themes in context with existing research literature. Abstract submission was open for 4 weeks in May 2020, resulting in 30 submissions from 13 countries across 5 continents. Of the 26 presenter teams, 9 (35%) had a co-presenter that was living with deafblindness themselves. The number of individual participants across all sessions ranged from 55 to 140 ( M = 98), with a total of 3709 session registrations overall, and the organizers estimate a total attendance of around 400 participants. Based on extensive field notes taken during the webinar, and repeated viewing of the recordings, qualitative description allowed the team to synthesize eight principal themes across the event: access to information, communication, service accessibility, adaptations to service delivery, online safety and security, physical distancing, mental health and research. The first Deafblind International webinar was able to fill an important gap by bringing together a variety of stakeholders in deafblindness across the globe. The event created a sense of group membership and peer support, brought the participants, researchers, the professionals as well as their service agencies closer together and generated a sense of hope and collaboration.

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

Cited by 9 publications

References 59 publications

Barriers and Facilitators That Influence Social Participation in Older Adults With Dual Sensory Impairment

Barriers and Facilitators That Influence Social Participation in Older Adults With Dual Sensory Impairment

Device abandonment in deafblindness: a scoping review of the intersection of functionality and usability through the International Classification of Functioning, Disability and Health lens

Living with deafblindness during COVID-19: An international webinar to facilitate global knowledge translation

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