Abstract
Children suffering from adrenoleukodystrophy (ALD) requires life-long care. Little is known about the care needs of parents of ALD children at different stages of their disease. The purpose of this study was to understand the long-term care experiences and care needs of parents caring for their ALD children. A descriptive qualitative study with 7 in-depth interviews was conducted with parents. The results of these care experiences were distinguished into three phases: "pathogenesis to diagnosis", "rapid deterioration of physiological functions", and "bedridden until the death". The long-term care experiences revealed five themes, including "chaos and helplessness to seek medical attention then being forced to accept", "self-accusation and guilt", "strengthening parents' toughness", "seizing the moment and facing the future", and "accompanying children through life without pain". Within the three phases, the care needs comprised the three themes of "integrating resources and providing immediate care", "obtaining information and support regarding ALD rapidly", and "establishing individualized long-term care". This study revealed the long-term care experiences and care needs of the parents of ALD children. Providing individualized care, nursing instruction, and telephone consultation as well as connecting case managers with the hospice-care team will help facilitate and meet the care needs of these parents.
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