Lived experiences of the diagnostic assessment process for fetal alcohol spectrum disorder: A systematic review of qualitative evidence

Abstract

Early assessment and diagnosis of FASD are crucial in providing therapeutic interventions that aim to enhance meaningful participation and quality of life for individuals and their families, while reducing psychosocial difficulties that may arise during adolescence and adulthood. Individuals with lived experience of FASD have expertise based on their own lives and family needs. Their insights into the assessment and diagnostic process are valuable for improving service delivery and informing the provision of meaningful, person‐ and family‐centered care. To date, reviews have focused broadly on the experiences of living with FASD. The aim of this systematic review is to synthesize qualitative evidence on the lived experiences of the diagnostic assessment process for FASD. Six electronic databases, including PubMed, the Cochrane Library, CINAH, EMBASE, PsycINFO, and Web of Science Core Collection were searched from inception until February 2021, and updated in December 2022. A manual search of reference lists of included studies identified additional studies for inclusion. The quality of included studies was assessed using the Critical Appraisal Skills Program Checklist for Qualitative Studies. Data from included studies were synthesized using a thematic analysis approach. GRADE‐CERQual was used to assess confidence in the review findings. Ten studies met the selection criteria for inclusion in the review. Thematic analysis identified 10 first‐level themes relating to four over‐arching topics: (1) pre‐assessment concerns and challenges, (2) the diagnostic assessment process, (3) receipt of the diagnosis, and (4) post‐assessment adaptations and needs. GRADE‐CERQual confidence ratings for each of the review themes were moderate to high. The findings from this review have implications for referral pathways, client‐centered assessment processes, and post‐diagnostic recommendations and support.

An evaluation of a multi-site fetal alcohol spectrum disorder models of care project

“…It is recognized that although an MDT is the gold standard for assessment and diagnosis of FASD, a more flexible diagnostic approach may be required, which includes further educating a wide range of clinicians, to help provide timely access to services ( 28 ). A FASD diagnosis provides an opportunity for individuals and their families to better understand their own strengths and weaknesses and gain access to further support and management for FASD ( 23 , 30 ). Despite the stigma surrounding FASD as a diagnosis ( 31 , 32 ), it is important for clinicians to be aware of the positive impact that a FASD diagnosis can have ( 30 , 33 ).…”

“…A FASD diagnosis provides an opportunity for individuals and their families to better understand their own strengths and weaknesses and gain access to further support and management for FASD ( 23 , 30 ). Despite the stigma surrounding FASD as a diagnosis ( 31 , 32 ), it is important for clinicians to be aware of the positive impact that a FASD diagnosis can have ( 30 , 33 ). A recent systematic review of the qualitative evidence on FASD lived experience emphasized the impact of receiving a FASD diagnosis ( 30 ).…”

“…Despite the stigma surrounding FASD as a diagnosis ( 31 , 32 ), it is important for clinicians to be aware of the positive impact that a FASD diagnosis can have ( 30 , 33 ). A recent systematic review of the qualitative evidence on FASD lived experience emphasized the impact of receiving a FASD diagnosis ( 30 ). The review also highlighted the difficulty in seeking recognition and validation for FASD and related concerns, reinforcing the need for health professionals to receive adequate FASD training.…”

Exploring resource implications and models of care for assessment and diagnosis of fetal alcohol spectrum disorder: A scoping review

“…There were no studies available that investigated the emotional or psychological costs of the assessment and diagnostic process for individuals or caregivers. There is a growing body of literature documenting the lived experiences of the assessment and diagnostic process for individuals and caregivers (i.e., see Hayes et al, 2023 for review), which could inform future research regarding the personal costs associated with the assessment and diagnostic process. Understanding the specific costs to patients undergoing FASD diagnostic assessment is critical to implement strategies to lessen the cost burden for individuals and families.…”

“…The current scoping review is part of a broader project to review and update the Australian Guide for Diagnosis of FASD (Hayes et al, 2022(Hayes et al, , 2023Hewlett et al, 2023;Reid, Kent, et al, 2023). In line with the Australian National Health and Medical Research Council standards for clinical practice guidelines (NHMRC, 2011), the evidence review process should include identifying evidence related to cost-effectiveness and resource implications of clinical practice.…”