Vulnerability among older people ageing with deafblindness

Abstract

Summary Vulnerability is an underexamined concept in social work. Scholarly activity principally concentrates on policy analysis and theoretical debate; less attention is given to lived experience of vulnerability from the perspectives of particular groups, impoverishing understanding of the phenomenon. This article presents findings from the first United Kingdom-based study of the lived experience of vulnerability from the perspectives of older deafblind adults. Adopting a qualitative design, data were collected via 18 semistructured interviews with eight participants (aged between 49 and 83), undertaken between October 2014 and July 2016. Data were analyzed using interpretative phenomenological analysis. Findings Participants interpret vulnerability as layered, describing what they feel vulnerable about, what they feel vulnerable to, and when they feel vulnerable. The latter layer is predominant: vulnerability experiences are time-limited, and situation and setting specific. Situational and pathogenic sources of vulnerability include the responses of other people, particularly the experience of being misunderstood or perceived as incapable. The layers of vulnerability are not discrete: they can be combined and avoidance of one vulnerability can exacerbate another. Applications Findings strengthen arguments against categorizing particular groups, including deafblind people, as permanently and immutably vulnerable. Such categorization, focused solely on impairment, provides an inadequate understanding of experience. Policymakers should consider adopting a layered approach to defining vulnerability. Assessment of these layers and how they interact may offer social workers an enhanced understanding of deafblind people's experiences and assist in determining what matters to them. Assessment should explore coping strategies, and assumptions of incapability based on impairment be rejected.

A salutogenesis approach to ageing with impairment: the managing and coping experiences of older people ageing with deafblindness

“…This study therefore focused specifically on people ageing with the impairment, irrespective of aetiology. This choice responds to knowledge gaps and calls for further research on the experiences of this sub-group (Simcock, 2020). Inclusion and exclusion criteria are listed in Table 1.…”

“…BSL interpreters were employed to help facilitate interviews with two participants. The particular practical, epistemological and methodological challenges this involvement raised, and how these were addressed, are explored elsewhere (Bacchini and Simcock, 2020;Simcock, 2020). All interviews were video-recorded, in order to capture non-verbal communication, the visual expression of emotion and the responses of BSL-using participants.…”

“…Although social situations are settings in which participants can feel vulnerable (Simcock, 2020), maintaining human connection provides access to information about the world and reduces isolation and felt loneliness. Anthony described the curative effect of human contact, which is 'like a medicine for loneliness' and helps him 'feel part of the world'.…”

“…Participants described feeling vulnerable when they sense they are out of control (Simcock, 2020). In further interpreting their experiences, they described ways in which they seek to maintain control in their lives.…”

“…Covering this small field, Kyle and Barnett (2012) argue that its focus on risk, insecurity and vulnerability to unfavourable outcomes supports a stereotyped view of deafblind people as a dependent population. This identification of deafblind people as a vulnerable group gives rise to persistent misunderstanding, a perception of incapability and the neglect of deafblind people's agency, creativity and ability, resulting in overprotection and control (Simcock, 2020). A systematically conducted review exploring deafblind people's vulnerability found significantly less exploration of capacity to cope in material originating from the UK, North America, Australia, the Nordic countries, and central and southern Europe (Simcock, 2017b), despite strengths, assets and ability to cope being key concepts in existing analyses of vulnerability, including vulnerabilities in old age (Schröder-Butterfill and Marianti, 2006;Brown et al, 2017).…”