The lived experience of vulnerability among adults ageing with deafblindness
: an interpretative phenomenological analysis

Student thesis: Doctoral ThesisDoctor of Philosophy


Deafblindness is a complex impairment and there is a paucity of qualitative research into the lived experiences of deafblind people. Little is also known about the lived experience of vulnerability, yet deafblind people are often presented as one of society’s most vulnerable groups. The research presented in this thesis is the first known UK based study of the lived experience of vulnerability among older people ageing with deafblindness. It therefore makes an important contribution to the limited body of knowledge about these phenomena and helps to give voice to a group often excluded in the gerontological and deafblind literature. The research was completed in two stages: first, a systematically conducted review and second, a qualitative study adopting interpretative phenomenological analysis as the research approach. Data were collected via eighteen semi-structured interviews, with eight participants aged 49-83. Two participants have congenital rubella syndrome and six have Usher syndrome. A detailed account of the methods used is provided, offering guidance to other researchers regarding the inclusion of deafblind people in qualitative study.

Problematising the notion of deafblind people as permanently and immutability vulnerable, participants interpret their vulnerability as layered: vulnerable about, vulnerable to and vulnerable when. Although interrelated, the latter layer is predominant: vulnerability is experienced as time-limited, and situation and setting specific, reflecting Mackenzie and colleagues’ (2014) taxonomy. The experience of being misunderstood or perceived as incapable is observed as a shared experience of situational vulnerability and adversely affects participants’ lives, negating their own coping strategies and the effectiveness of available support.

Participants’ experiences highlight the inadequacy of the long-standing congenital-acquired divide in deafblind research, policy and practice. Deafblindness, a non-stable impairment, is more an experience than an identity; central to this experience is difficulty compensating. This transcends the inability of one sense to compensate for impairment in the other and is multi-faceted.

Although participants experience vulnerability, ongoing difficulties, change and consequent adaptation, they adopt various coping strategies, and demonstrate creativity as they develop solutions to the challenges they encounter. Though these vary, the ways in which participants manage their difficulties, and the attributes of the care and support they value, respond to the very elements they identify as generating their felt vulnerability. The thesis concludes by outlining the implications of these findings for policy, practice and future research.
Date of Award1 Dec 2020
Original languageEnglish
Awarding Institution
  • King's College London
SupervisorJill Manthorpe (Supervisor) & Anthea Tinker (Supervisor)

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