King, Alex C; (2003) Living with this thing called Cushings. Doctoral thesis (D.Clin.Psy), UCL (University College London).

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Abstract

Cushing's Syndrome is a rare, insidious and elusive endocrine disorder that disrupts multiple physical and psychological balances. Neuro-endocrine and psychiatric research has described multiple factors relating to course and outcome, though the psychosocial determinants of the patient's experience and adjustment have been largely unexamined. However, clinical opinion, outcome data and first-person accounts hint at significant discrepancies between biochemical status and quality of life in the long recovery period. In this study, I argue for a broad, phenomenological approach to the experiences of people with Cushing's Syndrome, in order to explore significant psychosocial factors relating to adaptation, which could form the basis for future research and clinical practice. From a broad survey of the literature on illness, I have selected two influential frameworks, the Common-Sense Model of Illness Self-Regulation (Leventhal, Leventhal & Cameron, 2001) and the Possible Selves Model (Markus & Nurius, 1986) to establish two research questions that broadly frame this investigation: How do patients with Cushing's Syndrome understand their illness? and How does Cushing's Syndrome -and patients' understanding of it- affect their identity, and how does identity influence representations? In-depth interviews with fifteen participants, recruited through Endocrine and Neurosurgery clinics, were analysed iteratively using Interpretative Phenomenological Analysis (Smith, Flowers & Osborn, 1997). Checks on the analysis involved expert, peer and participant involvement, and self-reflection. Two central themes emerged: an Evolving Understanding of the illness, which is composed of distinct clusters of understanding that patients evolved while struggling to understand and control their illness; and the Transmutation of the Self, which describes the strong impact of the illness -and its perception by patients and their social context- in dissolving and reconfiguring core components of the Self. The discussion describes and links these themes to existing concepts and findings in the literature, noting the degree of overlap with accounts of acute, chronic and functional disorders. Equally, however, the data illuminate several dynamic aspects of the process of Illness Representation, which have received little attention, and propose new integrative hypotheses about the relationship of Identity to Illness Representation. Implications of patients' accounts for clinical practice are suggested, and finally, limitations and alternative qualitative organisations are discussed.

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