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

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dc.contributor.authorHayes, N.
dc.contributor.authorBagley, K.
dc.contributor.authorHewlett, N.
dc.contributor.authorElliott, E.J.
dc.contributor.authorPestell, C.F.
dc.contributor.authorGullo, M.J.
dc.contributor.authorMunn, Z.
dc.contributor.authorMiddleton, P.
dc.contributor.authorWalker, P.
dc.contributor.authorTill, H.
dc.contributor.authorShanley, D.C.
dc.contributor.authorYoung, S.L.
dc.contributor.authorBoaden, N.
dc.contributor.authorHutchinson, D.
dc.contributor.authorKippin, N.R.
dc.contributor.authorFinlay-Jones, A.
dc.contributor.authorFriend, R.
dc.contributor.authorShelton, D.
dc.contributor.authorCrichton, A.
dc.contributor.authorReid, N.
dc.date.issued2023
dc.descriptionFirst published: 02 May 2023
dc.description.abstractEarly 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. GRADECERQual 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.
dc.description.statementofresponsibilityNicole Hayes, Kerryn Bagley, Nicole Hewlett, Elizabeth J. Elliott, Carmela F. Pestell, Matthew J. Gullo, Zachary Munn, Philippa Middleton, Prue Walker, Haydn Till, Dianne C. Shanley, Sophia L. Young, Nirosha Boaden, Delyse Hutchinson, Natalie R. Kippin, Amy Finlay- Jones, Rowena Friend, Doug Shelton, Alison Crichton, Natasha Reid
dc.identifier.citationAlcoholism: Clinical and Experimental Research, 2023; 47(7):1209-1223
dc.identifier.doi10.1111/acer.15097
dc.identifier.issn0145-6008
dc.identifier.issn1530-0277
dc.identifier.orcidMunn, Z. [0000-0002-7091-5842]
dc.identifier.orcidMiddleton, P. [0000-0002-8573-338X]
dc.identifier.urihttps://hdl.handle.net/2440/138516
dc.language.isoen
dc.publisherWiley
dc.relation.granthttp://purl.org/au-research/grants/nhmrc/1172870
dc.relation.granthttp://purl.org/au-research/grants/nhmrc/1197488
dc.rights© 2023 The Authors. Alcohol: Clinical and Experimental Research published by Wiley Periodicals LLC on behalf of Research Society on Alcohol. This is an open access article under the terms of the Creative Commons Attribution License, which permits use, distribution and reproduction in any medium, provided the original work is properly cited.
dc.source.urihttps://doi.org/10.1111/acer.15097
dc.subjectclinical guidelines; diagnosis; fetal alcohol spectrum disorder; lived experience; prenatal alcohol exposure; qualitative synthesis
dc.titleLived experiences of the diagnostic assessment process for Fetal Alcohol Spectrum Disorder: A systematic review of qualitative evidence
dc.typeJournal article
pubs.publication-statusPublished

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