An invisible disability: navigating the enduring state of dual sensory impairment (DSI) in older age

Abstract

Dual sensory impairment (DSI) is a combination of vision and hearing impairment or loss, which varies in severity and is particularly prevalent in older age. DSI is a unique disability that sits at the intersection of ageing and disability, a complex medical issue with profoundly social consequences that has received little attention in health policy or disability research and practice. DSI presents significant challenges to older adults, their families and those with whom they interact, and despite its growing global prevalence, is underexplored in extant literature. This study uses grounded theory to explore the social meaning and experiences of older adults with DSI and their family carers in Australia. Multiple physical, social and emotional impacts of DSI contribute to reduced social participation and declining availability of social networks. Critically, smaller social networks reduce access to resources and support, with the spouse, or significant other, becoming the main locus of support and, by default, social engagement. Using Charmaz’s constructivist grounded theory methodology, this thesis examines the dyadic, that is, the interrelated, social experiences of two persons in a DSI context, through the narratives of both older adults with DSI and their family carers (n=23), to extend current and develop new understandings of the meaning and experiences of DSI in a social context. Findings from this study establish that the social experience of DSI can be understood as a series of asynchronous transitions and shared experiences that occur between the older person with DSI and their family carer. These findings are conceptualised as an ‘enduring state’, which represents the interrelated and embedded actions involved in the daily life work of DSI. This research draws attention to the hidden arduous ‘lines of work’ shared by both those with DSI and their family carers, specifically the social work of DSI. This social line of work reflects experiences of social exclusion and poor recognition of DSI at micro, meso and macro levels of society. The age of participants, their associated co morbidities and declining personal agency impact access to the limited resources, support and information available, despite significant effort on their part. Complex processes of emotional and interactional disconnection are characterised by social loss, social effort and social isolation, shaped by changing roles and asynchronous adaptation to living with DSI. Caring in this context is often predominantly social and ‘invisible’. To reduce the social effort of their family member with DSI and to maintain their own self-identity, family carers in this context adopted a ‘conscious caring’ approach. This is conceptualised in this thesis as an approach to caring that accounts for the subtle and enduring shared impacts of DSI. The power of ‘conscious’ in this context is the level of understanding of DSI that empowers family carers to recognise the shared elements of DSI and facilitate better articulation of needs to engage others within their care network. Caring was multifactorial with key characteristics of negotiation, facilitation, guardianship and creating opportunities. These caring characteristics were dynamic and strategic in that family carers sought opportunities that were mutually beneficial. Conscious caring contextualises the capacity of family carers to access resources embedded in their social networks by bridging the gap between the dyad (close ‘bonding’ ties) and broader social networks (i.e. weaker, ‘bridging’ and more diverse networks). Social capital is a critical factor in DSI; it is defined in this thesis as the flow of resources (such as social support, health information) via social networks at a personal and interpersonal level. A reduction in both bonding and bridging networks limits personal, social and psychosocial resources and impacts the capacity of the dyad to renegotiate their roles, create and maintain their individual and shared social networks, and successfully transition to living with DSI. This study adopts a novel approach to understanding the social experiences of DSI from the ‘ground up’, that is, from the perspectives of older adults with DSI and their family carers. The shared experiences of DSI suggest that a socially inclusive, relational and interdisciplinary approach to future service, research and practice has merit in bridging the social gap that currently exists in the care and support available to the DSI family.