Exploring the impact and experience of living with dystonia

This thesis is a discussion of the impact and experience of living with dystonia. The literature review investigated factors relating to health related quality of life (HRQOL) for people living with dystonia. The main research paper used interpretative phenomenological analysis to explore the experiences of people living with the condition. The thesis concludes with a critical appraisal of the two papers and the process of working with two different research paradigms. The literature review found that depression and anxiety had a significant, negative impact on HRQOL. Dystonia severity and psychosocial variables such as body concept and self-esteem were also implicated. A series of pervasive issues had a negative impact on the methodological quality of reviewed studies. These include a lack of engagement with key concepts such as HRQOL, depression and anxiety. Suggestions were made for future research designs. The main research paper produced three themes: (1) Dealing with ignorance and uncertainty: navigating health services with a rare, poorly understood condition; (2) The challenge of social isolation: overcoming barriers to positive social identity; and (3) Fear of psychological explanations: the impact of stigmatised attitudes towards psychological explanations for dystonia symptoms. Participants described their experiences of isolation and alienation which resulted from having a rare, visible and chronic health condition. Academic and clinical implications were discussed. Finally, the critical appraisal reflected on the process of writing using two different research paradigms. Adherence to the philosophical assumptions of each approach was considered a strength of the thesis. The limitations of the two approaches were discussed as well as recommendations for further research on dystonia.

Name dc:type.qualificationname

Ph.D.

Level dc:type.qualificationlevel

doctoral

Grantor dc:publisher.institution

Lancaster University

Year dc:date.issued

2018

Authors dc:creator

• Morgan, Andrew
• Eccles, Fiona
• Greasley, Pete