Living with Charcot-Marie-Tooth disease: a qualitative analysis

Lafarge, Caroline, Talsania, Krishna, Townshend, Julia and Fox, Pauline (2014) Living with Charcot-Marie-Tooth disease: a qualitative analysis. British Journal of Neuroscience Nursing, 10 (5). pp. 226-235. ISSN 1747-0307

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Abstract

Aim:
Charcot-Marie-Tooth (CMT) disease is one of the most common types of inherited nerve disorders. This study's objective was to gain insight into people's experiences of CMT.

Methods:
An online cross-sectional survey was used to elicit qualitative data as part of a study examining the health beliefs of people living with CMT. Participants were recruited through support organisations (n=285) and, of these, 194 provided qualitative comments. Data were analysed using thematic analysis.

Results:
Five themes were identified; the toll on the body, the invisible disease, emotional difficulties, social implications and resilience.

Conclusions:
Living with CMT can have significant physical, emotional and social consequences, but it is also an illustration of people's resilience. The findings highlight a perceived lack of awareness and understanding about CMT and its psychosocial impact among health professionals and the public. Neuroscience nurses, as part of a multidisciplinary team, can play a role in raising awareness of CMT to inform optimal support for people with CMT.

Item Type: Article
Additional Information: © 2014 MA Healthcare Limited
Uncontrolled Keywords: Charcot-Marie-Tooth disease, qualitative research, psychosocial aspects, neuroscience nursing
Subjects: Psychology
Depositing User: Caroline Lafarge
Date Deposited: 14 Mar 2016 11:42
Last Modified: 23 Jun 2017 10:41
URI: http://repository.uwl.ac.uk/id/eprint/1766

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