Abstract：
INTRODUCTION:The effects of prenatal exposure to alcohol are wide-ranging and pervasive in nature. In response to growing concerns about the lifelong disabilities related to prenatal alcohol exposure, a fetal alcohol spectrum disorder (FASD) diagnostic clinic was established in 2012. This was the first multi-disciplinary service operating permanently within an Australian health service. The current study aimed to explore the lived experience of the diagnostic process for caregivers of children with FASD. METHODS:Twelve caregivers were approached and ten participated in audiotaped interviews about caring for a child with FASD. Qualitative analysis was undertaken on transcribed interviews using NVivo 10 for thematic analysis. RESULTS:The major themes that emerged were: a desire for future support for their child although uncertainty about how this support could be accessed; an understanding of FASD prior to assessment but a concerted concern that this condition was not recognised as a disability across educational and related settings; that a formal assessment process provided validation for caregiver concerns and that caregivers felt respected and understood by the clinical team during this process. DISCUSSION:These findings highlight the concerns of caregivers, emphasising both the importance of diagnostic services and the need for provision of further support beyond diagnosis for a child with FASD. WHAT DOES THIS PAPER ADD?: This study provides information on the lived experiences of caregivers who attended the first multi-disciplinary FASD assessment and diagnostic service in Australia. This study provides valuable insight into the ongoing difficulties that families are experiencing following diagnosis in the current Australian context.
journal_name
Res Dev Disabiljournal_title
Research in developmental disabilitiesauthors
Chamberlain K,Reid N,Warner J,Shelton D,Dawe Sdoi
10.1016/j.ridd.2016.06.007subject
Has Abstractpub_date
2017-04-01 00:00:00pages
99-106eissn
0891-4222issn
1873-3379pii
S0891-4222(16)30122-6journal_volume
63pub_type
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