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Abstract

Age-related macular degeneration (AMD) is a chronic, progressive eye condition causing gradual loss of central vision among older adults. This PhD thesis explores how individuals experience AMD in the context of their personal circumstances, close relationships, and their social and material environment.

Firstly, I present a secondary Foucauldian discourse analysis of published qualitative extracts on the experience of AMD, in order to map the discursive resources available to talk about AMD experiences. Drawing on theory from critical studies of ageing and disability, the analysis suggests that AMD is often discursively constructed in negative, medicalised and individualistic terms. This provides a rationale for research that avoids presuppositions of loss and tragedy, and instead explores AMD more openly within a broader range of everyday social, relational and environmental contexts.

Consequently, in the second study, I present the findings of an interpretative phenomenological analysis (IPA) study, exploring convergence and divergence of the experiences of eight participants within the following four themes: Reconfiguring a destabilised identity and struggling to find a new place in the world; the intensive effort of learning to live with AMD; navigating the hope-despair continuum; and negotiating one’s place in the world.

In the third study, I analyse the accounts of a further eight participants using template analysis, in order to extend and further develop the IPA conducted on the initial eight accounts. This analysis provides new insights regarding, for instance: the influence of AMD on social interaction and communication; AMD as an intergenerational phenomenon; and the gulf between the self and others when seeking to disclose or verbalise the complex experience of AMD.

Finally, in the fourth study, I seek to more squarely explore how the environment around the person may shape their psychological experience of AMD, by conducting home tour interviews with two of the participants who took part in the IPA study, analysing these accounts using reflexive thematic analysis.

Throughout the thesis, I examine the challenges and affordances of using multiple research methods (methodological pluralism) to explore the personal, lived experiences of individuals with AMD, embedded within an understanding of how discourse and ideology influence the way individuals make sense of AMD. I also explore how the interview context (for example, the telephone interviews conducted for the IPA study, in contrast with the embodied, situated home tour interview) can shape the nature of the data collected.

In the discussion, I contextualise the overall findings within critical literature on ageing and disability as well as existential phenomenological literature within broader health psychology. This prompts reflection on implications for practice, with my research suggesting that the onset of AMD may be seen as an existential crisis point. Some participants had experienced deep despair but emerged from this to find varying new degrees of equilibrium and purpose; while for others, there was a more continual process of navigating the ‘hope-despair’ continuum and consistently working hard to “plod along” and remain pragmatic and proactive. Collectively, the studies of the thesis suggest that the sense of existential crisis may be intensified not only by the inherent challenges and limitations of AMD but also by negative social constructions of vision loss and aging. This perspective underscores the need for interventions that foster hope, pragmatism, and confidence among individuals living with AMD, alongside structural efforts to make environments more accessible and inclusive for people with vision loss.

Publication Type:	Thesis (Doctoral)
Subjects:	B Philosophy. Psychology. Religion > BF Psychology R Medicine > RA Public aspects of medicine > RA0421 Public health. Hygiene. Preventive Medicine
Departments:	School of Health & Psychological Sciences > Psychology School of Health & Psychological Sciences > School of Health & Psychological Sciences Doctoral Theses Doctoral Theses

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