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"You are just left to get on with it": qualitative study of patient and carer experiences of the transition to secondary progressive multiple sclerosis

Davies, Freya, Edwards, Adrian G., Brain, Katherine Emma, Edwards, M., Jones, R., Wallbank, Rachel, Robertson, Neil and Wood, Fiona Claire 2015. "You are just left to get on with it": qualitative study of patient and carer experiences of the transition to secondary progressive multiple sclerosis. BMJ Open 5 (7) , e007674. 10.1136/bmjopen-2015-007674

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Abstract

Objectives Although the transition to secondary progressive multiple sclerosis (SPMS) is known to be a period of uncertainty for clinicians, who may find progressive disease challenging to objectively identify, little research has explored the experiences of patients and carers specifically during this transition period. Our objective was to explore what patients and their carers understand about their disease stage and describe their experiences and perspectives on the transition to SPMS. Design Semistructured qualitative interviews and subsequent validation focus groups were analysed using inductive thematic analysis. Setting South East Wales, UK. Participants 20 patients with MS and 13 carers were interviewed. Eight patients and two carers participated in focus groups. Results Four main themes around disease progression were identified. ‘Realisation’ describes how patients came to understand they had SPMS while ‘reaction’ describes their response to this realisation. The ‘realities’ of living with SPMS, including dealing with the healthcare system during this period, were described along with ‘future challenges’ envisaged by patients and carers. Conclusions Awareness that the transition to SPMS has occurred, and subsequent emotional reactions and coping strategies, varied widely between patients and their carers. The process of diagnosing the transition was often not transparent and some individuals wanted information to help them understand what the transition to SPMS meant for them.

Item Type: Article
Date Type: Publication
Status: Published
Schools: MRC Centre for Neuropsychiatric Genetics and Genomics (CNGG)
Healthcare Sciences
Medicine
Subjects: R Medicine > RA Public aspects of medicine
R Medicine > RC Internal medicine > RC0321 Neuroscience. Biological psychiatry. Neuropsychiatry
Publisher: BMJ Publishing Group
ISSN: 2044-6055
Date of First Compliant Deposit: 30 March 2016
Date of Acceptance: 22 May 2015
Last Modified: 13 Jun 2019 11:14
URI: http://orca.cf.ac.uk/id/eprint/87152

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