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Background: Pediatric palliative care (CPP) is defined as active and holistic care of the child's body, mind and spirit, actively supporting the centrality and role of the family. They have as their primary objective the improvement of the quality of…
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…
