Pain experience, expression and coping in boys and young men with Duchenne Muscular Dystrophy - A pilot study using mixed methods.
Eur J Paediatr Neurol
; 20(4): 630-8, 2016 Jul.
Article
em En
| MEDLINE
| ID: mdl-27053141
ABSTRACT
UNLABELLED 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 11-21 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 of pains and discomfort should form part of all routine consultations.Palavras-chave
Texto completo:
1
Base de dados:
MEDLINE
Assunto principal:
Dor
/
Qualidade de Vida
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Adaptação Psicológica
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Distrofia Muscular de Duchenne
Tipo de estudo:
Etiology_studies
/
Qualitative_research
Limite:
Adolescent
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Adult
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Child
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Humans
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Male
Idioma:
En
Ano de publicação:
2016
Tipo de documento:
Article