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16-05-2024 | Fetal Alcohol Spectrum Disorder | Original Contribution

Qualitative study of the lived experience of methylphenidate prescribed for children with a fetal alcohol spectrum disorder

Authors: Clémentine Morin, Bérénice Doray, Cécilia Dumar, Jude Balit, Nicolas Bouscaren, Michel Spodenkiewicz

Published in: European Child & Adolescent Psychiatry

Abstract

Fetal Alcohol Spectrum Disorders (FASD) refer to physical, cognitive, and behavioural symptoms in an individual whose mother consumed alcohol during pregnancy. It is the leading cause of non-genetic avoidable mental disability, with an estimated worldwide prevalence of 1%. Attention Deficit Hyperactivity Disorder (ADHD) diagnostic criteria are met for 50–80% of patients with FASD. Methylphenidate (MPH) is the first-line pharmacological treatment for ADHD. This study aims to explore the lived experience of children with FASD taking MPH and their caregivers to adapt prescribing modalities by considering different ways to administer the drugs. We hope to improve the therapeutic alliance between the children and their caregivers by gaining an insiders’ view of the medication perception. Semi-structured interviews with children and their caregivers were conducted in this qualitative study. Data collection by purposive sampling continued until we reached theoretical sufficiency. Data were analysed using interpretative phenomenological analysis. We conducted 16 semi-structured interviews: 8 with the children aged 7–12, 5 boys and 3 girls and 8 with their caregivers. The analysis showed that inadequate palatability and capsule form experiences were the leading causes of children's non-adherence to the treatment. MPH appeared to be a valuable aid for caregivers even if they had concerns about its potential toxicity. However, it is necessary to identify caregivers' expectations concerning MPH to adapt the prescription in terms of choice of specialty and intake modalities. Regular support was required to reduce caregivers’ fears of dependence, personality transformation and long-term adverse effects. Information on palatability should be given when prescribing MPH to children with ADHD as well as its possible side effects or toxicity. It highlights the need for further studies of the experience of palatability of drugs prescribed to children. When prescribing a treatment, children should be more involved in medical counselling and it is necessary to understand the child's perspectives to co-construct common representations for better therapeutical adherence.

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Title: Qualitative study of the lived experience of methylphenidate prescribed for children with a fetal alcohol spectrum disorder
Authors: Clémentine Morin
Bérénice Doray
Cécilia Dumar
Jude Balit
Nicolas Bouscaren
Michel Spodenkiewicz
Publication date: 16-05-2024
Publisher: Springer Berlin Heidelberg
Keywords: Fetal Alcohol Spectrum Disorder
Attention Deficit Hyperactivity Disorder
Attention Deficit Hyperactivity Disorder
Published in: European Child & Adolescent Psychiatry
Print ISSN: 1018-8827
Electronic ISSN: 1435-165X
DOI: https://doi.org/10.1007/s00787-024-02457-z

ERS Congress 2024

Springer Medicine

Qualitative study of the lived experience of methylphenidate prescribed for children with a fetal alcohol spectrum disorder

Abstract

ERS Congress 2024

Springer Medicine

Abstract

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