Lived experiences of the diagnostic assessment process for Fetal Alcohol Spectrum Disorder: A systematic review of qualitative evidence

N Hayes, K Bagley, N Hewlett, E J Elliott, C F Pestell, M J Gullo, Z Munn, P Middleton, P. Walker, H Till, D C Shanley, S L Young, N Boaden, D Hutchinson, N R Kippin, A Finlay-Jones, R Friend, D Shelton, A Crichton, N Reid

Research output: Contribution to journalReview articlepeer-review


Early assessment for 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 hold expertise on their own lives and family needs, and their insights on the assessment and diagnostic process are valuable to improving service delivery and informing the provision of meaningful, person- and family-centred care. To date, reviews have focused more broadly on the experiences of living with FASD. The aim of this systematic review was to synthesise qualitative evidence on the lived experiences of the diagnostic assessment process for FASD. Six electronic databases, including PubMed, the Cochrane Library, CINALH, EMBASE, PsycINFO and Web of Science Core Collection were searched from inception until February 2021, and updated December 2022. Manual searching 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 synthesised using a thematic analysis approach. GRADE-CERQual was used to assess confidence in the review findings. Ten studies met the selection criteria and were included 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 review findings have implications for referral pathways, client-centred assessment processes, and post-diagnostic recommendations and support.
Original languageEnglish
JournalAlcoholism: Clinical and Experimental Research
Publication statusE-pub ahead of print - 2 May 2023


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