Jui-Chun Feng, Su-Fen Cheng, Wei-Wen Wu, Miao-Ju Chwo and Dat-Shong Lin
MacKay Memorial Hospital , Taiwan
National Taipei University of Nursing and Health Sciences,Taiwan
Posters & Accepted Abstracts: J Nurs Care
Adrenoleukodystrophy (ALD) incurable once diagnosis is confirmed, and the child ultimately relies on the primary caregiver for long-term home care until death. Purpose is to understand the primary caregiver├ó┬?┬?s lived experience. This study used qualitative study . There were six primary caregivers of ALD children who participated in this study. The results revealed with regard to the perceptions of the primary caregivers, five themes and fourteen sub-themes were identified. There are four sub-themes under the theme of ├ó┬?┬?chaos/helplessness while seeking medical attention and forced acceptance├ó┬?┬Ł: ├ó┬?┬?seeking medical attention for an unknown disease├ó┬?┬Ł, ├ó┬?┬?panic about inability to determine the current status of the illness├ó┬?┬Ł, ├ó┬?┬?shock and frustration upon confirmation of the diagnosis├ó┬?┬Ł, and ├ó┬?┬?objection to the recommendation of palliative care├ó┬?┬Ł. There were three sub-themes under the theme of ├ó┬?┬?maternal self-blame, worry and guilt├ó┬?┬Ł: ├ó┬?┬?distressed and felt own it to the child├ó┬?┬Ł, ├ó┬?┬?frustrated by inability to care for other siblings├ó┬?┬Ł, and ├ó┬?┬?worried about other siblings may have the disease├ó┬?┬Ł. There were three sub-themes under the theme of ├ó┬?┬?inspired maternal resilience├ó┬?┬Ł: ├ó┬?┬?ongoing search for possible treatment options├ó┬?┬Ł, ├ó┬?┬?commitment to care for the ill child├ó┬?┬Ł, and ├ó┬?┬?manifestation of maternal resilience├ó┬?┬Ł. There were two sub-themes under the theme of ├ó┬?┬?gradual family adaptation to the new norm├ó┬?┬Ł: ├ó┬?┬?making best effort to accompany the child for resolution of self-guilt├ó┬?┬Ł, and ├ó┬?┬?re-organization of family and social life├ó┬?┬Ł. There were two sub-themes under the theme of ├ó┬?┬?palliative accompaniment until death├ó┬?┬Ł: ├ó┬?┬?anticipates the child to receive the best care during bedridden├ó┬?┬Ł, and ├ó┬?┬?gradual acceptance of palliative care├ó┬?┬Ł. The researcher hopes to provide mental support and palliative accompaniment through the establishment of a collaborative pediatric palliative care team and a care management system for children with rare diseases.
Ms. Jui-Chun Feng is a head nurse at pediatric ward at MacKay Memorial hospital in Taiwan.
Journal of Nursing & Care received 3640 citations as per Google Scholar report