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

Author:

Hayes Nicole12ORCID,Bagley Kerryn34,Hewlett Nicole15,Elliott Elizabeth J.67,Pestell Carmela F.8ORCID,Gullo Matthew J.9ORCID,Munn Zachary10,Middleton Philippa1112,Walker Prue1314,Till Haydn1516ORCID,Shanley Dianne C.1617,Young Sophia L.1,Boaden Nirosha18ORCID,Hutchinson Delyse19202122ORCID,Kippin Natalie R.23ORCID,Finlay‐Jones Amy242526,Friend Rowena2728,Shelton Doug2930,Crichton Alison1331,Reid Natasha1ORCID

Affiliation:

1. Child Health Research Centre The University of Queensland South Brisbane Queensland Australia

2. Australian Research Council Centre of Excellence for the Digital Child Queensland University of Technology Brisbane Queensland Australia

3. La Trobe Rural Health School La Trobe University Bendigo Victoria Australia

4. Living with Disability Research Centre La Trobe University Melbourne Victoria Australia

5. First Nations Cancer and Wellbeing Research Team The University of Queensland Herston Queensland Australia

6. Faculty of Medicine and Health, Specialty of Child and Adolescent Health The University of Sydney Sydney New South Wales Australia

7. The Sydney Children's Hospitals Network Sydney New South Wales Australia

8. School of Psychological Science University of Western Australia Perth Western Australia Australia

9. School of Applied Psychology Griffith University Mount Gravatt Queensland Australia

10. Health Evidence Synthesis, Recommendations and Impact, School of Public Health, Faculty of Health and Medical Sciences The University of Adelaide Adelaide South Australia Australia

11. South Australian Health and Medical Research Institute Adelaide South Australia Australia

12. The University of Adelaide Adelaide South Australia Australia

13. Victorian Fetal Alcohol Service Monash Children's Hospital Clayton Victoria Australia

14. Australian Childhood Foundation Abbotsford Victoria Australia

15. Child Development Service Gold Coast Hospital and Health Service Southport Queensland Australia

16. School of Applied Psychology Griffith University Gold Coast Queensland Australia

17. Menzies Health Institute of Queensland Griffith University Gold Coast Queensland Australia

18. School of Social Sciences, Faculty of Social Work The University of New South Wales Sydney New South Wales Australia

19. Centre for Social and Early Emotional Development, School of Psychology, Faculty of Health Deakin University Geelong Victoria Australia

20. National Drug and Alcohol Research Centre The University New South Wales Sydney New South Wales Australia

21. Centre for Adolescent Health Murdoch Children's Research Institute, Royal Children's Hospital Melbourne Victoria Australia

22. Department of Paediatrics University of Melbourne, Royal Children's Hospital Melbourne Victoria Australia

23. Curtin School of Allied Health Curtin University Western Australia Bentley Australia

24. Telethon Kids Institute Nedlands Western Australia Australia

25. School of Population Health Curtin University Bentley Western Australia Australia

26. Medical School University of Western Australia Crawley Western Australia Australia

27. Patches Assessment Service Darwin Northern Territory Australia

28. Faculty of Health Charles Darwin University Darwin Northern Territory Australia

29. School of Medicine and Dentistry Griffith University Gold Coast Queensland Australia

30. Community Child Health Gold Coast Hospital and Health Service Southport Queensland Australia

31. Department of Paediatrics Monash University Melbourne Victoria Australia

Abstract

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. 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.

Funder

Department of Health and Aged Care, Australian Government

Publisher

Wiley

Reference48 articles.

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