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.

The Lived Experience of Teen Girls’ Abortion in Taiwan

“…has expertise in teen pregnancy and research methodology, and she has been principal investigator on many qualitative research studies, two of which were recently published in well-known journals (T. Y. Lee, Kurtz Landy, et al, 2014;T. Y. Lee, Li, & Liaw, 2014).…”

Neurocognitive and mental health impact of adrenoleukodystrophy across the lifespan: Insights for the era of newborn screening

“…Even after a diagnosis is made, lack of knowledge among health care professionals can contribute to ongoing stress among some parents. Mothers also reported significant feelings of powerlessness with regard to limited or unsatisfactory treatment options for their male children, especially those who were diagnosed at an advanced stage 103 . This sentiment of frustration with lack of options has also been echoed among mothers of daughters with ALD, as the future risks and implications of this diagnosis for females can be challenging to ascertain 100 …”

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