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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 anxi...

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Autores principales: Piercy, Hilary, Machaczek, Katarzyna, Ali, Parveen, Yap, Sufin
Formato: Online Artículo Texto
Lenguaje:English
Publicado: SAGE Publications 2017
Materias:
Acceso en línea:https://www.ncbi.nlm.nih.gov/pmc/articles/PMC5419063/
https://www.ncbi.nlm.nih.gov/pubmed/28516128
http://dx.doi.org/10.1177/2333393617707080
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author Piercy, Hilary
Machaczek, Katarzyna
Ali, Parveen
Yap, Sufin
author_facet Piercy, Hilary
Machaczek, Katarzyna
Ali, Parveen
Yap, Sufin
author_sort Piercy, Hilary
collection PubMed
description 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. Managing dietary intake examined how parents managed day-to-day dietary intake to ensure adequate intake and protection of safe fasting intervals. Managing and preventing illness events explored parental experiences of managing illness events and their approach to preventing these events. Management strategies were characterized by caution and vigilance and influenced by a lack of confidence in others to manage the condition. The study identifies the need for increased awareness of the condition, particularly in relation to emergency treatment.
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spelling pubmed-54190632017-05-17 Parental Experiences of Raising a Child With Medium Chain Acyl-CoA Dehydrogenase Deficiency Piercy, Hilary Machaczek, Katarzyna Ali, Parveen Yap, Sufin Glob Qual Nurs Res Article 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. Managing dietary intake examined how parents managed day-to-day dietary intake to ensure adequate intake and protection of safe fasting intervals. Managing and preventing illness events explored parental experiences of managing illness events and their approach to preventing these events. Management strategies were characterized by caution and vigilance and influenced by a lack of confidence in others to manage the condition. The study identifies the need for increased awareness of the condition, particularly in relation to emergency treatment. SAGE Publications 2017-05-03 /pmc/articles/PMC5419063/ /pubmed/28516128 http://dx.doi.org/10.1177/2333393617707080 Text en © The Author(s) 2017 http://creativecommons.org/licenses/by-nc/4.0/ This article is distributed under the terms of the Creative Commons Attribution-NonCommercial 4.0 License (http://www.creativecommons.org/licenses/by-nc/4.0/) which permits non-commercial use, reproduction and distribution of the work without further permission provided the original work is attributed as specified on the SAGE and Open Access page(https://us.sagepub.com/en-us/nam/open-access-at-sage).
spellingShingle Article
Piercy, Hilary
Machaczek, Katarzyna
Ali, Parveen
Yap, Sufin
Parental Experiences of Raising a Child With Medium Chain Acyl-CoA Dehydrogenase Deficiency
title Parental Experiences of Raising a Child With Medium Chain Acyl-CoA Dehydrogenase Deficiency
title_full Parental Experiences of Raising a Child With Medium Chain Acyl-CoA Dehydrogenase Deficiency
title_fullStr Parental Experiences of Raising a Child With Medium Chain Acyl-CoA Dehydrogenase Deficiency
title_full_unstemmed Parental Experiences of Raising a Child With Medium Chain Acyl-CoA Dehydrogenase Deficiency
title_short Parental Experiences of Raising a Child With Medium Chain Acyl-CoA Dehydrogenase Deficiency
title_sort parental experiences of raising a child with medium chain acyl-coa dehydrogenase deficiency
topic Article
url https://www.ncbi.nlm.nih.gov/pmc/articles/PMC5419063/
https://www.ncbi.nlm.nih.gov/pubmed/28516128
http://dx.doi.org/10.1177/2333393617707080
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