The experiences and perspectives of New Zealanders with fetal alcohol spectrum disorder (FASD) need to be heard since no research to date has been performed. FASD, a neuro-developmental disability with life-lasting effects, is irreversible. The condition is caused by prenatal exposure to alcohol.
This study aimed to explore and understand the daily challenges of New Zealand individuals with FASD.
Our sequential mixed methods design used two discrete but compatible qualitative methodologies – transcendental phenomenology in Phase One and classic grounded theory in Phase Two – framed by the meta-theory of pragmatism, which allows the use of ‘what works’ in research. One methodology alone would not have answered our research question. Using the same sample of 14 individuals, 14 to 37 years, two separate data sets were produced sequentially using face-to-face unstructured interviews. Participants had been diagnosed with either fetal alcohol syndrome (FAS) or fetal alcohol effects (FAE). Data credibility was checked using triangulation.
Six themes common to the participants’ experiences emerged: daily challenges in the classroom; daily challenges in the workplace; coping with mental health issues; memory problems; socialization difficulties and involvement with the law and authority. Phase Two’s emerging theory revealed that because the participants perceived they had been under-supported by the social/health systems, many engaged in illegal behaviours (secondary disabilities) and experienced employment and social problems. Many disavowed having the disability, but with maturity and knowing the signs and symptoms, accepted it. They suggested ways in which their concerns could be resolved.
In order that progress in this field can take place, health and social agencies, educational and criminal justice systems and policy-makers need to have increased awareness of the disability and the complex problems that individuals with the disability and their families face.
Key Words: Fetal alcohol spectrum disorder, fetal alcohol syndrome, fetal alcohol effects, challenging behaviours, transcendental phenomenology, classic grounded theory