How Do Clinicians and Caregivers Describe Barriers to FASD Evaluation and Diagnosis? Open Access

Abstract

FASD is a diagnosis that encompasses a range of developmental disabilities caused by prenatal

alcohol exposure, such as neurological abnormalities and cognitive and behavioral impairment.

Existing literature suggests that FASD occurs as often as autism spectrum disorder, but FASD

remains underdiagnosed in most clinical settings. This phenomenon is deleterious to individuals

who have FASD because diagnosis is needed for receipt of effective treatment of symptoms and

interventions that mitigate harmful outcomes caused by the disorder, such as lifelong physical

and cognitive disability, homelessness, imprisonment and other ramifications that lead to a poor

quality of life for these individuals. Past research shows that various barriers, including social

stigma and lack of awareness of FASD, contribute to the underascertainment of FASD. However,

there was limited existing qualitative research that explored barriers to diagnosis of FASD and no

qualitative study examined barriers to evaluation and diagnosis of FASD in the United States.

This CDC sponsored study of the process of the evaluation and subsequent diagnosis of children

increased qualitative evidence regarding barriers to timely FASD diagnosis by using semi-

structured one-on-one interviews to identify and understand barriers to evaluation and diagnosis

of FASD based on lived experiences of caregivers of children suspected of having FASD and

clinicians who evaluate and diagnose children with FASD.

Table of Contents

INTRODUCTION ....................................................................................................................................................... 1

RISK FACTORS OF FASD .............................................................................................................................................. 2

CONSEQUENCES OF FASD ............................................................................................................................................ 3

EARLY INTERVENTION IS PARAMOUNT ...................................................................................................................... 3

KNOWN BARRIERS TO TIMELY DIAGNOSIS OF FASD ............................................................................................... 4

LITERATURE REVIEW ............................................................................................................................................ 5

METHODS ................................................................................................................................................................... 9

STUDY DESIGN: ............................................................................................................................................................. 9

ELIGIBILITY CRITERIA AND RECRUITMENT: ........................................................................................................... 10

DATA COLLECTION .................................................................................................................................................... 13

INTERVIEW PROCESS ................................................................................................................................................. 15

DATA ANALYSIS ......................................................................................................................................................... 16

DATA MANAGEMENT ................................................................................................................................................. 17

IRB APPROVAL: ......................................................................................................................................................... 18

RESULTS................................................................................................................................................................... 18

INTRODUCTION: ......................................................................................................................................................... 18

KEY FINDINGS ............................................................................................................................................................ 23

BARRIER TO EVALUATION/DIAGNOSIS: DOCUMENTED CONFIRMATION OF PAE AS DIAGNOSTIC CRITERIA .. 23

BARRIER TO EVALUATION/DIAGNOSIS: AFFORDABILITY OF EVALUATIONS ....................................................... 26

BARRIERS TO EVALUATION AND DIAGNOSIS: LONG WAIT TIME FOR EVALUATION APPOINTMENTS ............... 29

OTHER FINDINGS ....................................................................................................................................................... 30

SUMMARY OF FINDINGS ............................................................................................................................................ 31

DISCUSSION ............................................................................................................................................................ 31

STRENGTHS ................................................................................................................................................................ 34

LIMITATIONS .............................................................................................................................................................. 34

PUBLIC HEALTH IMPLICATIONS ............................................................................................................................... 36

CONCLUSION ............................................................................................................................................................... 38

REFERENCES........................................................................................................................................................... 39

APPENDICES ........................................................................................................................................................... 45

About this Master's Thesis

Rights statement

• Permission granted by the author to include this thesis or dissertation in this repository. All rights reserved by the author. Please contact the author for information regarding the reproduction and use of this thesis or dissertation.

School	Rollins School of Public Health
Department	Behavioral Sciences and Health Education
Degree	M.P.H.
Submission	Master's Thesis
Language	English
Research Field	Health Sciences, Toxicology Health Sciences, Public Health
Keyword	Barrier Fetal Alcohol Spectrum Disorder Diagnosis FASD Clinician Caregiver Evaluation
Committee Chair / Thesis Advisor	Hannah Cooper, Emory University
Committee Members	Claire Coles, Emory University

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