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Title: Patients' perspectives in multiple sclerosis : uncertainty and anxiety hinder psychological wellbeing
Author: Jones, Bridget
Awarding Body: University of Surrey
Current Institution: University of Surrey
Date of Award: 2014
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Multiple sclerosis (MS), diagnosed at young age, is characterised by fluctuating symptoms, treatment ambiguity and uncertain prognosis. Depression and anxiety are generally considered as comorbid responses, with anxiety and denial as temporary phases in models of adjustment to chronic illness. This thesis proposed that early fears could persist to promote maladaptive coping and hinder adjustment. The research comprised four studies aimed at investigating anxieties, measuring their association with adjustment and assessing the feasibility of piloting an intervention to address anxiety. Narrative analysis of experiences recorded for study one (N=7) highlighted emotional isolation and future-oriented fear as important responses, particularly related to disability. A systematic review of literature in this area spotlighted published indications that anxiety may be health specific, separate from depression and requiring investigation. Study two (N=238) provided evidence from self-report cross-sectional data that diagnosis anxieties and fear predicted avoidance at 12 to 18 months. Avoidance predicted maladaptive coping, which contributed negatively to long-term outcome. Study three (N=41) focussed on data from an optional section of the study two survey to assess the feasibility of drawing concerns, whether this visual method would be acceptable to participants, and if the data could be suitable for evaluating and rescripting inappropriately negative responses. Participants who provided visual representations of responses to MS were found to be representative of the main sample. Findings also indicated that data demonstrated descriptive content, symbolism, syntax and holistic representations that could be evaluated and rescripted. Based on the well-researched method of expressive writing, study four (N=21) piloted visual methods as an intervention for rescripting disproportionately fearful heuristic responses. Thesis findings provided a thread of patient-centred experiences and research evidence revealing an insightful montage of coping approaches. The diagnosis environment, patient perceptions, cognitive interpretations, emotional reactions and behavioural responses concurred with existing literature. The novel finding across all studies was that anxiety processes may not reflect temporary stages of coping. They represent a complex interactive and potentially fluctuating response in the face of future-oriented threat imposed by MS. An art-based intervention could usefully access and adjust adverse heuristics that hinder adaptation.
Supervisor: Not available Sponsor: Not available
Qualification Name: Thesis (Ph.D.) Qualification Level: Doctoral
EThOS ID:  DOI: Not available