Psychosocial aspects of living with a visible neurological condition

Maxwell-Scott, Melanie and Eccles, Fiona and O'Keeffe, Fiadhnait (2023) Psychosocial aspects of living with a visible neurological condition. PhD thesis, Lancaster University.

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Abstract

This thesis examines the psychosocial aspects of experience for people living with visible neurological conditions. Section one reports on a systematic literature review of qualitative studies exploring how individuals and families cope with Tourette’s syndrome. A systematic search using keywords related to coping and Tourette’s syndrome was conducted on four academic databases. A meta-ethnographic approach led to the construction of three themes: redefining the self and social identity; controlling the body; and challenging the narrative. The findings support a biopsychosocial approach to understanding the condition. This has clinical implications for the treatment of Tourette’s syndrome and future research should seek to expand on this knowledge. Section two reports on an empirical study exploring how people with neck dystonia navigate the social world. Ten participants were interviewed using a semi-structured, qualitative approach. Three themes were constructed from the data: dismissed by others for having an unfamiliar condition; negotiating a new social identity; and managing the stigma of a visible condition. The findings highlight the importance of social identity and the impact of stigma on people with visible health conditions. Further research should seek to explore the nature of distress arising from these psychosocial difficulties with the aim of tailoring clinical interventions for people with neck dystonia. Section three includes a critical appraisal with reflections on the process of conducting this project. Consideration is also given to the role of psychology in addressing systematic societal concerns such as stigma.