Caregivers' experiences with diagnosis of fetal alcohol spectrum disorder: A life-course approach

Joanna T. W. Chu; Nikki Singh; Jessica C. McCormack; Andre D. McLachlan; Janell Dymus-Kurei; Holly Wilson; Samantha Marsh; David Newcombe

doi:10.3109/13668250.2025.2459822

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Caregivers' experiences with diagnosis of fetal alcohol spectrum disorder: A life-course approach

Journal article

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Caregivers' experiences with diagnosis of fetal alcohol spectrum disorder: A life-course approach

Joanna T. W. Chu, Nikki Singh, Jessica C. McCormack, Andre D. McLachlan, Janell Dymus-Kurei, Holly Wilson, Samantha Marsh and David Newcombe

Journal of Intellectual and Developmental Disability, Vol.50(4), pp.424-433

2025

DOI: https://doi.org/10.3109/13668250.2025.2459822

PMID: 40028995

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Abstract

assessment

diagnosis

Fetal alcohol

life course approach

lived experiences

Background: Fetal alcohol spectrum disorder (FASD) is a developmental disability. A diagnosis of FASD is vital for support and wellbeing. However, receiving a diagnosis can be challenging. The aim of this research was to understand the experiences and impact of diagnosis for caregivers of those with FASD in New Zealand. Method: We conducted focus groups with caregivers and whānau (family) to explore their experiences with FASD. The transcripts were analysed using reflexive thematic analysis. Results: We identified three themes across the life course of diagnosis, barriers to diagnosis, meaning of diagnosis and life with diagnosis. Conclusion: A diagnosis is vital for caregivers of those with FASD. However, it is difficult to access a diagnosis in New Zealand due to professionals’ lack of training, knowledge, and inadequate professional support. It is essential to build our professionals workforce competence and skills of FASD.

Details

Title: Caregivers' experiences with diagnosis of fetal alcohol spectrum disorder: A life-course approach
Authors: Joanna T. W. Chu (Corresponding Author) - University of Auckland
Nikki Singh - University of Auckland
Jessica C. McCormack - University of Otago
Andre D. McLachlan - Waikato Institute of Technology
Janell Dymus-Kurei - Hāpai Te Hauora | Māori Public Health (New Zealand)
Holly Wilson - University of Auckland
Samantha Marsh - University of Auckland
David Newcombe - University of Auckland
Publication details: Journal of Intellectual and Developmental Disability, Vol.50(4), pp.424-433
Publisher: Routledge
Date published: 2025
DOI: 10.3109/13668250.2025.2459822
ISSN: 1469-9532; 1366-8250
PMID: 40028995
Copyright note: © 2025 The Author(s). Published by Informa UK Limited, trading as Taylor & Francis Group. This is an Open Access article distributed under the terms of the Creative Commons Attribution-NonCommercial-NoDerivatives License (http://creativecommons.org/licenses/by-nc-nd/4.0/), which permits non-commercial re-use, distribution, and reproduction in any medium, provided the original work is properly cited, and is not altered, transformed, or built upon in any way. The terms on which this article has been published allow the posting of the Accepted Manuscript in a repository by the author(s) or with their consent.
Grant note: This work was supported by the Health Research Council of New Zealand Activation Grant [grant number HRC 20/1174].
Organisation Unit: School of Health - Psychology
Language: English
Record Identifier: 991195439702621
Output Type: Journal article

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