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Published VersionCC BY-NC V4.0, Open Access
Journal article
Establishing the prevalence of fetal alcohol spectrum disorder among young people in Youth Justice residences in Aotearoa, New Zealand: a study protocol
BMJ Open, Vol.16(2), pp.1-8
2026
PMID: 41628933
Abstract
Introduction: Fetal alcohol spectrum disorder (FASD) is a diagnostic term that describes the neurodevelopmental and physical effects resulting from prenatal exposure to alcohol. Individuals living with FASD can experience lifelong challenges, yet with a diagnosis and sufficient support for the individual and their whānau (families), people can live fulfilling lives. Currently, little is known of the prevalence and impact in Aotearoa, New Zealand (NZ). Our aim is to identify the prevalence and understand the needs of young people living with FASD and other neurodevelopmental disorders in Youth Justice (YJ) residences in Aotearoa, NZ. One study will investigate the prevalence of FASD in this setting. The outcomes of both studies may demonstrate barriers and enablers, as well as strengths and gaps in YJ services of Aotearoa, NZ. The outcomes of both studies may guide reinforcing of current best practices as well as highlight necessary and novel initiatives together providing best support for the children and adolescents and their whānau as well as staff across YJ residences.
Methods and analysis: Extensive consultation with Māori and Pacific Advisory groups, researchers and experts in FASD and justice settings, individuals living with FASD and YJ staff together informed the development of this study.
Children and adolescents (hereafter young people) aged 10 to 18 years and currently residing in YJ residences are eligible for participation and assessment for FASD through assenting and consenting to provide personal and social histories and completed physical and neuropsychological assessments. The comprehensive FASD histories, screening and assessment will be conducted by a neuropsychologist and paediatrician employing standardised assessment practices and instruments. The team will also collect information from health, education and care and protection records; from the young people themselves; and from their family and staff. The study will reference Whakakotahitanga, the newly released (2024) guidelines for screening and diagnosing FASD in Aotearoa, NZ while also acknowledging the differences imposed under constraints of funding research including, for example, time and money. An individualised report will be prepared for each young person and their whānau. Study data will be analysed with descriptive statistics as appropriate. Our findings will be considered by the Māori and Pasifika advisory groups for framing and culturally secure translation, disseminated with all participating young people, translated to YJ services and staff, government and community neurodiversity sectors. Outcomes will be made available through community hubs, conferences, reports and peer-reviewed journal publications.
Ethics and dissemination: The study has received ethical approval from the Southern Health and Disability Ethics Committee (2024 Full 20065). Locality ethical approval has been granted from Oranga Tamariki (Ministry of Children), and a privacy impact evaluation has been undertaken. The findings will be shared through peer-reviewed publication, local and national conferences and with key agencies including Oranga Tamariki.
Details
- Title
- Establishing the prevalence of fetal alcohol spectrum disorder among young people in Youth Justice residences in Aotearoa, New Zealand: a study protocol
- Authors
- Joanna Ting Wai Chu (Corresponding Author) - University of AucklandJessica McCormack - University of OtagoValerie McGinn - The FASD Centre Aotearoa (New Zealand)Chris Bullen - University of AucklandAnita Gibbs - University of OtagoAshley Seaford - Oranga Tamariki | Ministry for Children (New Zealand)Felicity Ware - Hāpai Te Hauora | Māori Public Health (New Zealand)Raewyn Mutch - Government of Western AustraliaHoriana Jones - Oranga Tamariki | Ministry for Children (New Zealand)Elaine Umali - University of AucklandChelsey Gardiner - University of AucklandHolly Wilson - University of AucklandHarmony Moki - University of AucklandAsher Fai’ai - Hāpai Te Hauora | Māori Public Health (New Zealand)Varsha Parag - University of AucklandDavid Newcombe (Author) - University of Auckland
- Publication details
- BMJ Open, Vol.16(2), pp.1-8
- Publisher
- BMJ Group
- Date published
- 2026
- DOI
- 10.1136/bmjopen-2025-107208
- ISSN
- 2044-6055
- PMID
- 41628933
- Copyright note
- © Author(s) (or their employer(s)) 2026. Re-use permitted under CC BY-NC. No commercial re-use. See rights and permissions. Published by BMJ Group. https://creativecommons.org/licenses/by-nc/4.0/ This is an open access article distributed in accordance with the Creative Commons Attribution Non Commercial (CC BY-NC 4.0) license, which permits others to distribute, remix, adapt, build upon this work non-commercially, and license their derivative works on different terms, provided the original work is properly cited, appropriate credit is given, any changes made indicated, and the use is non-commercial. See: https://creativecommons.org/licenses/by-nc/4.0/.
- Grant note
- This research is funded by the Health Research Council of New Zealand (22/682).
- Organisation Unit
- School of Health - Psychology
- Language
- English
- Record Identifier
- 991202949502621
- Output Type
- Journal article
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