Abstract
This research was conducted to describe Taiwanese mothers’ lived experience of caring for their child diagnosed with adrenoleukodystrophy. Analysis of eight interviews by Colaizzi’s method revealed six themes: (1) difficulty confirming the diagnosis; (2) powerlessness toward unsatisfactory treatment; (3) struggles with decisions around carrier testing; (4) guilt about being a carrier; (5) support from family, other parents, and religion; and (6) lack of integrated resources and support. The results suggest the need to raise public and physician awareness about adrenoleukodystrophy via the media and medical education. A central organization to provide parents with comprehensive information is needed.
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