Pain experience, expression and coping in boys and young men with Duchenne muscular dystrophy - a pilot study using mixed methods

Hunt, A, Carter, Bernie, Abbott, J, Parker, A, deGoede, C and Spinty, S (2016) Pain experience, expression and coping in boys and young men with Duchenne muscular dystrophy - a pilot study using mixed methods. European Journal of Paediatric Neurology, 20 (4). pp. 630-638. ISSN 1090-3798 DOI https://doi.org/10.1016/j.ejpn.2016.03.002

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Abstract

There is limited research exploring the pain experience of boys and young men with Duchenne Muscular Dystrophy. Methods: We conducted a mixed-methods pilot study to assess the feasibility of using particular measures of pain, pain coping and quality of life within semi-structured interviews with boys and young men with Duchenne Muscular Dystrophy and a postal survey of their parents. Non-probability, convenience sampling was used. Results: Twelve young men aged 11 to 21 years (median 15 years), three of whom were still ambulant, and their parents / guardians were recruited. The measures used were acceptable to the young men and demonstrated potential to provide useful data. Two-thirds of young men suffered from significant daily pain which was associated with reduced quality of life. Pain complaints were largely kept within the family. Young men's pain-coping strategies were limited by their restricted physical abilities. Statistical power based on these preliminary results suggests a study of approximately 50 boys/young men which appears feasible. Conclusions: Further study is needed to explore acceptable and effective methods of pain management in this population and ways of enhancing pain-coping strategies. In clinical practice, assessment

Item Type: Article
Subjects: R Medicine > R Medicine (General)
Date Deposited: 04 Apr 2016 15:57
URI: http://repository.edgehill.ac.uk/id/eprint/7476

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