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Understanding anxiety in Duchenne Muscular Dystrophy: Starting with the perspectives of boys with the condition and parents

Trimmer, Rachel; (2019) Understanding anxiety in Duchenne Muscular Dystrophy: Starting with the perspectives of boys with the condition and parents. Doctoral thesis (D.Clin.Psy), UCL (University College London). Green open access

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Abstract

This thesis focuses on anxiety experienced by males with Duchenne Muscular Dystrophy (DMD), a chronic and life-limiting genetic neuromuscular condition. Part 1 reviews the research literature on the prevalence, characteristics, causes and impact of anxiety within this population. A high prevalence of anxiety amongst this population is indicated. The causes of anxiety remain unclear, however, organic explanatory frameworks and the adjustment literature offer models for understanding its presence. The review highlights the absence of literature investigating the characteristics and impact of anxiety within this population and the need for further research into these areas. Part 2 reports on a qualitative study applying Framework Analysis to perspectives about anxiety elicited from eight boys aged seven to 18 with a diagnosis of DMD and 14 parents of boys aged 18 and under with a diagnosis of DMD. Analysis of focus group transcripts highlights six characteristics of anxiety recurrently reported by participants. Factors impacted by anxiety and reciprocally influential over anxiety are identified across individual, family, social and environmental contexts. A model is provided outlining a set of hypotheses about relationships between anxiety and contextual factors. Clinical implications are discussed, including the importance of psychological assessment, formulation, and intervention for anxiety as part of a comprehensive DMD care approach. Suggestions for future research are made. Part 3 offers reflections on several key influences and observations involved in the research processes of this study. These include more detailed considerations of possible causes and consequences of a dominant organic model of anxiety within this population. Reflections on the influence of a Liberation Psychology framework on the researcher’s theoretical orientation, analysis and write-up are shared. Finally,

Type: Thesis (Doctoral)
Qualification: D.Clin.Psy
Title: Understanding anxiety in Duchenne Muscular Dystrophy: Starting with the perspectives of boys with the condition and parents
Event: UCL (University College London)
Open access status: An open access version is available from UCL Discovery
Language: English
Additional information: Copyright © The Author 2019. Original content in this thesis is licensed under the terms of the Creative Commons Attribution-NonCommercial 4.0 International (CC BY-NC 4.0) Licence (https://creativecommons.org/licenses/by-nc/4.0/). Any third-party copyright material present remains the property of its respective owner(s) and is licensed under its existing terms. Access may initially be restricted at the author’s request.
UCL classification: UCL
UCL > Provost and Vice Provost Offices
UCL > Provost and Vice Provost Offices > School of Life and Medical Sciences
UCL > Provost and Vice Provost Offices > School of Life and Medical Sciences > Faculty of Brain Sciences
URI: https://discovery.ucl.ac.uk/id/eprint/10081874
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