Understanding anxiety experienced by young males with Duchenne muscular dystrophy: a qualitative focus group study
•The first qualitative study of the experiences of anxiety in young people with DMD.•We identified six anxiety characteristics describing the anxiety phenotype in DMD.•Anxiety in DMD is influenced by external factors and endogenous anxiety traits.•Standard anxiety scales may underestimate anxiety sy...
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| Published in: | Neuromuscular disorders : NMD Vol. 34; pp. 95 - 104 |
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| Main Authors: | , , , |
| Format: | Journal Article |
| Language: | English |
| Published: |
England
Elsevier B.V
01-01-2024
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| Subjects: | |
| Online Access: | Get full text |
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| Summary: | •The first qualitative study of the experiences of anxiety in young people with DMD.•We identified six anxiety characteristics describing the anxiety phenotype in DMD.•Anxiety in DMD is influenced by external factors and endogenous anxiety traits.•Standard anxiety scales may underestimate anxiety symptoms in the DMD population.•Many parents were dissatisfied with existing mental health support for their child.
In this multi-methods study we explored the characteristics, causes and impact of anxiety in Duchenne muscular dystrophy (DMD) from the perspective of young males with DMD and their parents. Eight young males with DMD (7–18 years) and 14 parents participated in separate focus groups. Perspectives on anxiety were explored using semi-structured interview schedules. Themes were identified using Framework Analysis. Neurodevelopmental, emotional and behavioural symptom scores were obtained using standard instruments including the Strengths and Difficulties Questionnaire and Revised Children's Anxiety and Depression Scale. We identified six common anxiety characteristics: Catastrophic conclusions; Rigidly-held anxieties; Extreme distress; Social anxieties; Physical changes/needs; Unexpected/unfamiliar. Four further themes described influential systemic factors: Individual, Family, and Social responses and Physical environment and service contexts. All DMD participants had significantly higher total difficulties, emotional problems and impact scores than population norms. The Revised Children's Anxiety and Depression Scale showed low sensitivity in identifying anxiety symptoms. Fifty-seven percent (8/14) of parents who had wanted help for their son's anxiety were dissatisfied with the available support. In conclusion, anxiety can severely impact wellbeing and functioning of individuals with DMD. There are important nuances to consider when managing DMD-associated anxiety. We highlight the importance of multimodal assessment considering the multiple contexts within which anxiety arises. |
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| Bibliography: | ObjectType-Article-1 SourceType-Scholarly Journals-1 ObjectType-Feature-2 content type line 23 |
| ISSN: | 0960-8966 1873-2364 |
| DOI: | 10.1016/j.nmd.2023.12.002 |