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

Nicole Hayes^{1

2}, Kerryn Bagley^{3

4}, Nicole Hewlett^{1

5}, Elizabeth J Elliott^{6

7}, Carmela F Pestell⁸, Matthew J Gullo⁹, Zachary Munn¹⁰, Philippa Middleton^{11

12}, Prue Walker^{13

14}, Haydn Till^{15

16}, Dianne C Shanley^{16

17}, Sophia L Young¹, Nirosha Boaden¹⁸, Delyse Hutchinson^{19

20

21

22}, Natalie R Kippin²³, Amy Finlay-Jones^{24

25

26}, Rowena Friend^{27

28}, Doug Shelton^{29

30}, Alison Crichton^{13

31}, Natasha Reid¹

Affiliations

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.

PMID: 37132046
PMCID: PMC10947124
DOI: 10.1111/acer.15097

Review

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

Nicole Hayes et al. Alcohol Clin Exp Res (Hoboken). 2023 Jul.

. 2023 Jul;47(7):1209-1223.

doi: 10.1111/acer.15097. Epub 2023 May 12.

Authors

Affiliations

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.

PMID: 37132046
PMCID: PMC10947124
DOI: 10.1111/acer.15097

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.

Keywords: clinical guidelines; diagnosis; fetal alcohol spectrum disorder; lived experience; prenatal alcohol exposure; qualitative synthesis.

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Conflict of interest statement

The authors have no conflicts of interest to declare.

Figures

**FIGURE 1**
PRISMA flow diagram for the selection of studies.

See this image and copyright information in PMC

References

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

Affiliations

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

Authors

Affiliations

Abstract

Conflict of interest statement

Figures

References

Publication types

Grants and funding

LinkOut - more resources

Full Text Sources

Miscellaneous