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medium chain acyl-CoA dehydrogenase deficiency

Parental Experiences of Raising a Child With Medium Chain Acyl-CoA Dehydrogenase Deficiency

Newborn screening enabling early diagnosis of medium chain acyl-CoA dehydrogenase deficiency (MCADD) has dramatically improved health outcomes in children with MCADD. Achieving those outcomes depends on effective management by parents. Understanding parental management strategies and associated anxieties and concerns is needed to inform provision of appropriate care and support. Semistructured interviews were conducted with a purposive sample of parents of children aged 2 to 12 years. Thematic analysis identified two main themes.

Wed, 01/11/2023 - 13:55