The lived experiences of main caregivers caring for children with adrenoleukodystrophy

23^rd World Nursing and Healthcare Conference

July 10-12, 2017 Berlin, Germany

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

Abstract :

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 caregiverâ�?�?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 â�?�?chaos/helplessness while seeking medical attention and forced acceptanceâ�?: â�?�?seeking medical attention for an unknown diseaseâ�?, â�?�?panic about inability to determine the current status of the illnessâ�?, â�?�?shock and frustration upon confirmation of the diagnosisâ�?, and â�?�?objection to the recommendation of palliative careâ�?. There were three sub-themes under the theme of â�?�?maternal self-blame, worry and guiltâ�?: â�?�?distressed and felt own it to the childâ�?, â�?�?frustrated by inability to care for other siblingsâ�?, and â�?�?worried about other siblings may have the diseaseâ�?. There were three sub-themes under the theme of â�?�?inspired maternal resilienceâ�?: â�?�?ongoing search for possible treatment optionsâ�?, â�?�?commitment to care for the ill childâ�?, and â�?�?manifestation of maternal resilienceâ�?. There were two sub-themes under the theme of â�?�?gradual family adaptation to the new normâ�?: â�?�?making best effort to accompany the child for resolution of self-guiltâ�?, and â�?�?re-organization of family and social lifeâ�?. There were two sub-themes under the theme of â�?�?palliative accompaniment until deathâ�?: â�?�?anticipates the child to receive the best care during bedriddenâ�?, and â�?�?gradual acceptance of palliative careâ�?. 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.

Biography :

Ms. Jui-Chun Feng is a head nurse at pediatric ward at MacKay Memorial hospital in Taiwan.