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Published on: August 5, 2017
Caregivers' experiences with diagnosis of fetal alcohol spectrum disorder: A life-course approach
Joanna T W Chu1,2, Nikki Singh1, Jessica C McCormack3
1Social and Community Health, School of Population Health, The University of Auckland, Auckland, New Zealand.
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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