Abstract | BACKGROUND: METHODS: Qualitative interviews were conducted with caregivers in the UK. Interviews were conducted by telephone, were recorded and transcribed. Data were analysed using thematic analysis and saturation was recorded. RESULTS: Ten interviews were conducted with parents of individuals aged 4-19 years. Caregivers reported proximal impacts (physical, emotional, time-related), and distal impacts (work, relationships, social life) of caring for their sons. The relationships between these impacts were illustrated in a conceptual model. Changes to the caregiver experience since initiation with their son's treatment were discussed. CONCLUSION: Caring for an ambulatory individual with nonsense mutation Duchenne muscular dystrophy has a substantial multifaceted impact on caregivers. Treatments which have the potential to improve symptoms or delay progression, may also have a positive impact on the quality of life of caregivers.
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Authors | Kate Williams, Ian Davidson, Mark Rance, Katharina Buesch, Sarah Acaster |
Journal | Journal of patient-reported outcomes
(J Patient Rep Outcomes)
Vol. 5
Issue 1
Pg. 71
(Aug 10 2021)
ISSN: 2509-8020 [Electronic] Germany |
PMID | 34374872
(Publication Type: Journal Article)
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Copyright | © 2021. The Author(s). |