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- W2028582505 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." @default.
- W2028582505 created "2016-06-24" @default.
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- W2028582505 date "2014-10-02" @default.
- W2028582505 modified "2023-09-27" @default.
- W2028582505 title "Living with Charcot-Marie-Tooth Disease: a qualitative analysis" @default.
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- W2028582505 doi "https://doi.org/10.12968/bjnn.2014.10.5.226" @default.
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