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

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.