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

IF 1.9 4区医学 Q1 EDUCATION, SPECIAL

Journal of Intellectual & Developmental Disability Pub Date : 2025-03-03 DOI:10.3109/13668250.2025.2459822

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

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引用次数: 0

Abstract

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.

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来源期刊

Journal of Intellectual & Developmental Disability Multiple-

CiteScore

3.40

自引率

7.70%

发文量

期刊介绍： Journal of Intellectual & Developmental Disability (formerly the Australia and New Zealand Journal of Developmental Disabilities) is the official journal of the Australasian Society for the Study of Intellectual Disability (ASSID). JIDD is an international, multidisciplinary journal in the field of intellectual and developmental disability. The journal publishes original qualitative and quantitative research papers, literature reviews, conceptual articles, brief reports, case reports, data briefs, and opinions and perspectives.