1 40 1 Dublin Core The Dublin Core metadata element set is common to all Omeka records, including items, files, and collections. For more information see, http://dublincore.org/documents/dces/. Title A name given to the resource March 2019 List Text A resource consisting primarily of words for reading. Examples include books, letters, dissertations, poems, newspapers, articles, archives of mailing lists. Note that facsimiles or images of texts are still of the genre Text. Citation List Month March 2019 List URL Address <a href="http://doi.org/10.6224/JN.201902_66(1).05" target="_blank" rel="noreferrer noopener"> http://doi.o rg/10.6224/JN.201902_66(1).05</a> Dublin Core The Dublin Core metadata element set is common to all Omeka records, including items, files, and collections. For more information see, http://dublincore.org/documents/dces/. Title A name given to the resource The Long-Term Care Experiences and Care Needs of Parents Caring for Children With Adrenoleukodystrophy Publisher An entity responsible for making the resource available Journal of Nursing Date A point or period of time associated with an event in the lifecycle of the resource 2019 Subject The topic of the resource Needs Assessment; Descriptive Research; Hospice Care; Human; Interviews; Helplessness Learned; Guilt; Psychosocial Aspects of Illness; Qualitative Studies; Parental Attitudes; Individualized Medicine; Long Term Care; Peroxisomal Disorders -- Psychosocial Factors Creator An entity primarily responsible for making the resource Jui-Chun F; Wei-Wen W U; Miao-Ju C; Shu-Yuan L; Su-Fen C Identifier An unambiguous reference to the resource within a given context <a href="http://doi.org/10.6224/JN.201902_66(1).05" target="_blank" rel="noreferrer noopener"> 10.6224/JN.201902_66(1).05</a> Rights Information about rights held in and over the resource Article information provided for research and reference use only. PedPalASCNET does not hold any rights over the resource listed here. All rights are retained by the journal listed under publisher and/or the creator(s). Description An account of the resource Background: 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. Purpose: The purpose of this study was to understand the long-term care experiences and care needs of parents caring for their ALD children. Methods: A descriptive qualitative study with 7 in-depth interviews was conducted with parents. Results: 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". Conclusion/Implication for Practice: 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. 2019 Descriptive Research Guilt Helplessness Learned Hospice Care Human Individualized Medicine Interviews Journal of Nursing Jui-Chun F Long Term Care March 2019 List Miao-Ju C Needs Assessment Parental Attitudes Peroxisomal Disorders -- Psychosocial Factors Psychosocial Aspects of Illness Qualitative Studies Shu-Yuan L Su-Fen C Wei-Wen W U