“It’s Just Always Eating”: The Experiences of Young People Growing up Medium Chain Acyl-coA Dehydrogenase Deficiency

PIERCY, Hilary, NUTTING, Charlotte and YAP, Sufin (2021). “It’s Just Always Eating”: The Experiences of Young People Growing up Medium Chain Acyl-coA Dehydrogenase Deficiency. Global Qualitative Nursing Research, 8.

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Official URL: https://journals.sagepub.com/doi/10.1177/233339362...
Open Access URL: https://journals.sagepub.com/doi/pdf/10.1177/23333... (Published version)
Link to published version:: https://doi.org/10.1177/23333936211032203
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    Abstract

    Medium chain acyl-CoA dehydrogenase deficiency (MCADD) is a rare metabolic disorder, and commonly now part of newborn screening programs. Those diagnosed at birth are now progressing from childhood to adulthood. The study aim was to explore young people’s experiences of living with MCADD and managing their condition. A descriptive qualitative study design involving semi-structured interviews with 12 participants aged 10 to 15 years, recruited from one regional pediatric metabolic disorder service in England. Data were analyzed using thematic analysis. The two major themes were “Eating for energy” and “Growing into a self-management role.” Self-monitoring and self-management skills had been nurtured from early childhood by parents and healthcare providers. Young people’s anxieties concerned having to maintain adequate energy input to stay safe and the associated burden of responsibility. Growing up with MCADD presents specific challenges. Self-management and ongoing support are important for dealing with those challenges.

    Item Type: Article
    Additional Information: ** Embargo end date: 16-08-2021 ** From SAGE Publishing via Jisc Publications Router ** Licence for this article starting on 16-08-2021: https://creativecommons.org/licenses/by/4.0/ **Journal IDs: eissn 2333-3936 **Article IDs: publisher-id: 10.1177_23333936211032203 **History: published_online 16-08-2021; accepted 25-06-2021; rev-recd 22-06-2021; submitted 07-01-2021
    Uncontrolled Keywords: Single-Method Research Article, qualitative, young people, metabolic disorder, medium chain acyl-CoA dehydrogenase deficiency, MCADD, England
    Identification Number: https://doi.org/10.1177/23333936211032203
    SWORD Depositor: Colin Knott
    Depositing User: Colin Knott
    Date Deposited: 19 Aug 2021 10:06
    Last Modified: 19 Aug 2021 10:15
    URI: http://shura.shu.ac.uk/id/eprint/28958

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