title: The lived experience of Taiwanese mothers of a child diagnosed with adrenoleukodystrophy.
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.
authors.affiliation: York University, Canada.
authors.forename: Tsorng-Yeh
authors.initials: TY
authors.lastname: Lee
authors.forename: Chia-Chi
authors.initials: CC
authors.lastname: Li
authors.forename: Jen-Jiuan
authors.initials: JJ
authors.lastname: Liaw
mesh_terms: D000326:Adrenoleukodystrophy / Q000175:diagnosis / Q000235:genetics / Q000523:psychology*; D000328:Adult; D002648:Child; D005260:Female; D006167:Guilt; D006301:Health Services Needs and Demand; D006579:Heterozygote; D006801:Humans; D008297:Male; D008875:Middle Aged; D009035:Mothers / Q000523:psychology*; D036301:Qualitative Research; D012944:Social Support; D013624:Taiwan
keywords: children; chronic illness; experience; genetic testing; phenomenology; qualitative research