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Res Dev Disabil. 2017 Apr;63:99-106. doi: 10.1016/j.ridd.2016.06.007. Epub 2016 Jun 23.

A qualitative evaluation of caregivers' experiences, understanding and outcomes following diagnosis of FASD.

Author information

1
School of Applied Psychology, Griffith University, Mt Gravatt, Queensland 4121, Australia.
2
School of Applied Psychology, Griffith University, Mt Gravatt, Queensland 4121, Australia. Electronic address: natasha.reid@griffithuni.edu.au.
3
Child Development Service, Gold Coast Hospital & Health Service, Queensland, Australia.

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.

KEYWORDS:

Assessment; Diagnosis; Fetal alcohol spectrum disorder (FASD); Qualitative research

PMID:
27346290
DOI:
10.1016/j.ridd.2016.06.007
[Indexed for MEDLINE]

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