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.

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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
Subjects: Psychology
Depositing User: Caroline Lafarge
Date Deposited: 14 Mar 2016 11:42
Last Modified: 16 May 2016 07:21

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