Living with Charcot-Marie-Tooth Disease: a qualitative analysis
| Autor: | Julia M Townshend, Pauline Fox, Krishna Talsania, Caroline Lafarge |
|---|---|
| Rok vydání: | 2014 |
| Předmět: |
congenital
hereditary and neonatal diseases and abnormalities media_common.quotation_subject Qualitative property Disease nervous system diseases Developmental psychology Tooth disease Qualitative analysis Neurology (clinical) Psychological resilience Thematic analysis Psychology Psychosocial General Nursing media_common Clinical psychology Qualitative research |
| Zdroj: | British Journal of Neuroscience Nursing. 10:226-235 |
| ISSN: | 2052-2800 1747-0307 |
| DOI: | 10.12968/bjnn.2014.10.5.226 |
| Popis: | 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. |
| Databáze: | OpenAIRE |
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