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

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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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Availability of data and material

The datasets analyzed during the current study are available from the corresponding author on reasonable request.

Code availability

Not applicable.

Abbreviations

ADHD:

Attention deficit hyperactivity disorder

CG:

Caregiver

FAS:

Fetal alcohol syndrome

FASD:

Fetal alcohol spectrum disorder

FP:

Foster parents

IPA:

Interpretive phenomenological analysis

MPH:

Methylphenidate

PIP:

Paediatric investigation plans

WISC-5:

Wechsler intelligence scale for children - 5th edition

YCESS-RS:

Young child emotional state self-rating scale

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Acknowledgements

We would like to thank the participants of this study, and Pr Patricia Dobkin for the English proofreading.

Funding

We would like to thank the French Congress of Psychiatry for funding this project.

Author information

Authors and Affiliations

Authors

Contributions

MS and BD conceived the design and methodology; CM conducted the research interviews, CM, MS, CD, JB, NB performed the data analysis. CM wrote the first draft of the manuscript. All authors contributed to and have approved the final manuscript.

Corresponding author

Correspondence to Michel Spodenkiewicz.

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Conflict of interest

The authors have no competing interests or potential conflicts to disclose.

Ethics approval and consent to participate

An authorization was obtained from the French Commission Nationale de l'Informatique et des Libertés (2206739 v 0). All participants provided oral informed consent before inclusion.

Consent for publication

All participants gave their consent.

Ethics approval

An authorization was obtained from the French Commission Nationale de l'Informatique et des Libertés (2206739 v 0).

Consent to participate

All children and their parents provided written consent before inclusion in the study.

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Morin, C., Doray, B., Dumar, C. et al. Qualitative study of the lived experience of methylphenidate prescribed for children with a fetal alcohol spectrum disorder. Eur Child Adolesc Psychiatry (2024). https://doi.org/10.1007/s00787-024-02457-z

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