The long-term care needs 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 Chu-Yu Huang

MacKay Memorial Hospital, Taiwan
National Taipei University of Nursing and Health Sciences,Taiwan

Posters & Accepted Abstracts: J Nurs Care

Abstract :

Adrenoleukodystrophy (ALD) is a rare recessive hereditary metabolic disease. At the disease onset, the child exhibits gradual deterioration of physical functions. The child ultimately relies on the primary caregiver for long-term home care until death. Purpose is to understand the care needs of the primary caregivers as they care for the ALD children. This qualitative study used semi-structured interview for data collection. There were six primary caregivers of ALD children who participated in this study. The results revealed there were three themes of care needs emerged during the phase of â�?�?onset of disease to confirmation of diagnosisâ�?: â�?�?facing parental perception of childâ�?�?s abnormal behaviorsâ�?, â�?�?needs for collaborative outpatient careâ�?, â�?�?prompt confirmation of diagnosisâ�?. During the second phase â�?�?deterioration after confirmation of diagnosisâ�?, three themes of care needs were identified: â�?�?swift comprehension of the disease information and resourcesâ�?, â�?�?learned accurate knowledge, skills and application of facilitating equipmentâ�?, and â�?�?received timely assistanceâ�?. There were three themes of care needs during the phase of â�?�?long-term bedridden to deathâ�?: â�?�?provision of individualized care during hospitalizationâ�?, â�?�?provision of long-term homecare serviceâ�?, and â�?�?provision of hospice care at homeâ�?. The researcher hopes to provide mental support and palliative accompaniment through the establishment of a collaborative pediatric palliative care team, a care management system for children with rare diseases, and integrated care between discharge preparation and home care. Recommends development of temporary childcare services at nursing home of the university hospital so that the primarily caregivers and the family may rest and improve the quality of home care for the ALD children.

Biography :

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