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

Lafarge, Caroline ORCID:, Talsania, Krishna, Townshend, Julia and Fox, Pauline ORCID: (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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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.

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.

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

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
Identifier: 10.12968/bjnn.2014.10.5.226
Additional Information: © 2014 MA Healthcare Limited
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: 06 Feb 2024 15:44

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