{"status":"ok","message-type":"work","message-version":"1.0.0","message":{"indexed":{"date-parts":[[2026,9,8]],"date-time":"2026-09-08T02:51:36Z","timestamp":1788835896001,"version":"build-2803163510"},"reference-count":71,"publisher":"Wiley","issue":"6","license":[{"start":{"date-parts":[[2023,10,4]],"date-time":"2023-10-04T00:00:00Z","timestamp":1696377600000},"content-version":"vor","delay-in-days":0,"URL":"http:\/\/creativecommons.org\/licenses\/by-nc-nd\/4.0\/"}],"content-domain":{"domain":["onlinelibrary.wiley.com"],"crossmark-restriction":true},"short-container-title":["Develop Med Child Neuro"],"published-print":{"date-parts":[[2024,6]]},"abstract":"<jats:title>Abstract<\/jats:title><jats:sec><jats:title>Aim<\/jats:title><jats:p>To explore the lived experiences of individuals with fetal alcohol spectrum disorder (FASD), their caregivers, and professionals working with individuals with FASD.<\/jats:p><\/jats:sec><jats:sec><jats:title>Method<\/jats:title><jats:p>We conducted a scoping review using qualitative methods to explore what it is like to live with FASD from the perspective of those living with FASD, their caregivers, and stakeholders experienced in working with individuals with FASD. We searched electronic databases and grey literature for research published between 2005 and 2022.<\/jats:p><\/jats:sec><jats:sec><jats:title>Results<\/jats:title><jats:p>The 47 studies included in this scoping review show that FASD affects people's lives on a daily basis. Individuals with FASD are aware of their disability and its effects. Caregivers face daily challenges raising children with FASD and are often left unsupported by professionals. Professionals are unprepared and frustrated when supporting someone with FASD.<\/jats:p><\/jats:sec><jats:sec><jats:title>Interpretation<\/jats:title><jats:p>FASD affects individuals, caregivers, and families on a daily basis; and they require improved support and funding.<\/jats:p><\/jats:sec><jats:sec><jats:title>What this paper adds<\/jats:title><jats:p><jats:list list-type=\"bullet\">\n<jats:list-item><jats:p>Professionals are overwhelmed and frustrated because of a lack of training and organizational support with regard to fetal alcohol spectrum disorder (FASD).<\/jats:p><\/jats:list-item>\n<jats:list-item><jats:p>Extends on previous reviews with the inclusion of grey literature and professionals.<\/jats:p><\/jats:list-item>\n<jats:list-item><jats:p>FASD is a highly stigmatized disorder that affects individuals with FASD, and their caregivers and families, on a daily basis.<\/jats:p><\/jats:list-item>\n<jats:list-item><jats:p>Research is needed exploring the experiences of adults living with FASD and their siblings.<\/jats:p><\/jats:list-item>\n<jats:list-item><jats:p>There is a lack of research involving indigenous populations and their experience with FASD.<\/jats:p><\/jats:list-item>\n<\/jats:list><\/jats:p><\/jats:sec>","DOI":"10.1111\/dmcn.15761","type":"journal-article","created":{"date-parts":[[2023,10,5]],"date-time":"2023-10-05T19:20:37Z","timestamp":1696533637000},"page":"702-712","update-policy":"https:\/\/doi.org\/10.1002\/crossmark_policy","source":"Crossref","is-referenced-by-count":21,"title":["Lived experience of fetal alcohol spectrum disorder: A qualitative scoping review"],"prefix":"10.1111","volume":"66","author":[{"ORCID":"https:\/\/orcid.org\/0000-0001-8701-3872","authenticated-orcid":false,"given":"Holly","family":"Wilson","sequence":"first","affiliation":[{"name":"Social and Community Health, School of Population Health The University of Auckland  Auckland New Zealand"}],"role":[{"vocabulary":"crossref","role":"author"}]},{"given":"Jessica C.","family":"McCormack","sequence":"additional","affiliation":[{"name":"Social and Community Health, School of Population Health The University of Auckland  Auckland New Zealand"},{"name":"Food Science University of Otago  Dunedin New Zealand"}],"role":[{"vocabulary":"crossref","role":"author"}]},{"given":"Nikki","family":"Singh","sequence":"additional","affiliation":[{"name":"Social and Community Health, School of Population Health The University of Auckland  Auckland New Zealand"}],"role":[{"vocabulary":"crossref","role":"author"}]},{"given":"Joanna Ting Wai","family":"Chu","sequence":"additional","affiliation":[{"name":"Social and Community Health, School of Population Health The University of Auckland  Auckland New Zealand"}],"role":[{"vocabulary":"crossref","role":"author"}]}],"member":"311","published-online":{"date-parts":[[2023,10,4]]},"reference":[{"key":"e_1_2_9_2_1","doi-asserted-by":"publisher","DOI":"10.1503\/cmaj.141593"},{"key":"e_1_2_9_3_1","doi-asserted-by":"publisher","DOI":"10.1001\/jamapediatrics.2017.1919"},{"key":"e_1_2_9_4_1","doi-asserted-by":"publisher","DOI":"10.1001\/archpsyc.63.9.1009"},{"key":"e_1_2_9_5_1","doi-asserted-by":"publisher","DOI":"10.1097\/00004703-200408000-00002"},{"key":"e_1_2_9_6_1","doi-asserted-by":"publisher","DOI":"10.1542\/peds.2014-1915"},{"key":"e_1_2_9_7_1","doi-asserted-by":"publisher","DOI":"10.1111\/acer.14385"},{"key":"e_1_2_9_8_1","doi-asserted-by":"publisher","DOI":"10.1177\/07067437211053288"},{"issue":"1","key":"e_1_2_9_9_1","first-page":"e53","article-title":"Life expectancy of people with fetal alcohol syndrome","volume":"23","author":"Thanh NX","year":"2016","journal-title":"Journal of Population Therapeutics and Clinical Pharmacology."},{"key":"e_1_2_9_10_1","doi-asserted-by":"publisher","DOI":"10.1080\/16066359.2018.1478413"},{"key":"e_1_2_9_11_1","doi-asserted-by":"publisher","DOI":"10.3109\/13668250.2020.1865649"},{"key":"e_1_2_9_12_1","doi-asserted-by":"publisher","DOI":"10.1177\/17446295231172234"},{"issue":"0","key":"e_1_2_9_13_1","first-page":"1","article-title":"Knowledge, attitudes, and practices towards fetal alcohol spectrum disorder in New Zealand educators: An online survey","volume":"0","author":"Chu JTW","year":"2022","journal-title":"Journal of Intellectual Disabilities."},{"key":"e_1_2_9_14_1","doi-asserted-by":"publisher","DOI":"10.1016\/j.ridd.2022.104354"},{"key":"e_1_2_9_15_1","doi-asserted-by":"publisher","DOI":"10.1111\/dmcn.13696"},{"issue":"143","key":"e_1_2_9_16_1","article-title":"Systematic review of scoping review? Guidance for authors when choosing between a systematic or scoping review approach. Medical Research","volume":"18","author":"Munn Z","year":"2018","journal-title":"Methodology."},{"key":"e_1_2_9_17_1","doi-asserted-by":"publisher","DOI":"10.7326\/M18-0850"},{"key":"e_1_2_9_18_1","doi-asserted-by":"publisher","DOI":"10.1503\/cmaj.1040302"},{"key":"e_1_2_9_19_1","unstructured":"HongQN PluyeP FabreguesS BartlettG BoardmanF CargoM et al. Mixed Methods Appraisal Tool (MMAT) [Internet]."},{"key":"e_1_2_9_20_1","doi-asserted-by":"publisher","DOI":"10.3233\/EFI-180221"},{"key":"e_1_2_9_21_1","doi-asserted-by":"publisher","DOI":"10.1177\/1043659612452006"},{"key":"e_1_2_9_22_1","volume-title":"Northern British Columbian aboriginal mothers: raising adolescents with fetal alcohol spectrum disorder. Proquest Dissertations and Theses Global","author":"Johnston MS","year":"2008"},{"key":"e_1_2_9_23_1","doi-asserted-by":"publisher","DOI":"10.1016\/j.childyouth.2004.10.008"},{"issue":"1","key":"e_1_2_9_24_1","first-page":"e37","article-title":"Adults with fetal alcohol spectrum disorder: factors associated with positive outcomes and contact with the criminal justice system","volume":"23","author":"Currie BA","year":"2016","journal-title":"Journal of Population Therapy and Clinical Pharmacology."},{"key":"e_1_2_9_25_1","first-page":"5206","article-title":"Overcoming the challenges of caring for a child with foetal alcohol spectrum disorder: a Pilbara community perspective","volume":"19","author":"McRae T","year":"2019","journal-title":"Rural and Remote Health."},{"key":"e_1_2_9_26_1","doi-asserted-by":"publisher","DOI":"10.1007\/s11469-009-9264-7"},{"key":"e_1_2_9_27_1","doi-asserted-by":"publisher","DOI":"10.3109\/13668250.2016.1156659"},{"key":"e_1_2_9_28_1","doi-asserted-by":"publisher","DOI":"10.1177\/1074840719847185"},{"key":"e_1_2_9_29_1","doi-asserted-by":"publisher","DOI":"10.1007\/s10826-017-0776-7"},{"key":"e_1_2_9_30_1","doi-asserted-by":"publisher","DOI":"10.1177\/1049732314545497"},{"key":"e_1_2_9_31_1","volume-title":"Quality of life for Alaskan Individuals with FASD and their families. Proquest Dissertations and ThesesGlobal","author":"Dow BS","year":"2019"},{"issue":"3","key":"e_1_2_9_32_1","first-page":"94","article-title":"The complexities of caring for individuals with Fetal Alcohol Spectrum Disorder: the perspective of mothers","volume":"19","author":"Michaud D","year":"2013","journal-title":"Journal of Developmental Disabilities."},{"issue":"3","key":"e_1_2_9_33_1","first-page":"e308","article-title":"A long journey: biological and non\u2010biological parents' experiences raising children with FASD","volume":"17","author":"Sanders JL","year":"2010","journal-title":"Journal of Population Therapy and Clinical Pharmacology."},{"key":"e_1_2_9_34_1","doi-asserted-by":"publisher","DOI":"10.1111\/cfs.12288"},{"issue":"1","key":"e_1_2_9_35_1","first-page":"66","article-title":"\"Well where's he supposed to live?\" \u2010 Experiences of adoptive parents of emerging adult children with FASD in Ontario","volume":"24","author":"Pepper J","year":"2019","journal-title":"Journal of Developmental Disabilities."},{"key":"e_1_2_9_36_1","volume-title":"Fallen by the wayside: young people with fetal alcohol spectrum disorder (FASD) in New Zealand's youth justice system","author":"Sherwood K.","year":"2019"},{"key":"e_1_2_9_37_1","doi-asserted-by":"publisher","DOI":"10.1177\/03085759211050044"},{"key":"e_1_2_9_38_1","article-title":"The role of a Clinical Psychologist in a Multidisciplinary School Setting: Working with Children Affected by Fetal Alcohol Syndrome\u2010A Qualitative Analysis","author":"Tilley A. L.","year":"2006","journal-title":"Proquest Dissertations and Theses Global: The Chicago School of Professional Psychology"},{"key":"e_1_2_9_39_1","doi-asserted-by":"publisher","DOI":"10.1016\/j.ridd.2016.06.007"},{"key":"e_1_2_9_40_1","doi-asserted-by":"publisher","DOI":"10.1177\/0308575913477331"},{"key":"e_1_2_9_41_1","doi-asserted-by":"publisher","DOI":"10.1111\/j.1468-3156.2011.00692.x"},{"issue":"2","key":"e_1_2_9_42_1","first-page":"e191","article-title":"Fetal alcohol spectrum disorder: New Zealand birth mothers' experiences","volume":"15","author":"Salmon J.","year":"2008","journal-title":"Canadian Journal of Clinical Pharmacology."},{"key":"e_1_2_9_43_1","doi-asserted-by":"publisher","DOI":"10.1016\/j.socscimed.2012.10.027"},{"key":"e_1_2_9_44_1","doi-asserted-by":"publisher","DOI":"10.1016\/j.ridd.2019.103428"},{"key":"e_1_2_9_45_1","doi-asserted-by":"publisher","DOI":"10.1108\/ADD-10-2018-0014"},{"key":"e_1_2_9_46_1","doi-asserted-by":"publisher","DOI":"10.1007\/s10560-007-0086-9"},{"key":"e_1_2_9_47_1","doi-asserted-by":"publisher","DOI":"10.1177\/001440290607200307"},{"key":"e_1_2_9_48_1","doi-asserted-by":"publisher","DOI":"10.1007\/s10826-006-9078-1"},{"key":"e_1_2_9_49_1","doi-asserted-by":"publisher","DOI":"10.1038\/s41390-020-0799-4"},{"key":"e_1_2_9_50_1","doi-asserted-by":"publisher","DOI":"10.1007\/s41252-017-0030-8"},{"key":"e_1_2_9_51_1","doi-asserted-by":"publisher","DOI":"10.1080\/13668250601031930"},{"key":"e_1_2_9_52_1","doi-asserted-by":"publisher","DOI":"10.5206\/eei.v26i1.7735"},{"key":"e_1_2_9_53_1","doi-asserted-by":"publisher","DOI":"10.1177\/1363461516689216"},{"issue":"1","key":"e_1_2_9_54_1","first-page":"e41","article-title":"An exploration of the experiences and perspectives of New Zealanders with fetal alcohol spectrum disorder","volume":"19","author":"Salmon JV","year":"2012","journal-title":"Journal of Population Therapy and Clinical Pharmacology."},{"issue":"3","key":"e_1_2_9_55_1","first-page":"76","volume":"19","author":"Watson S","year":"2013","journal-title":"Journal of Developmental Disabilities."},{"issue":"3","key":"e_1_2_9_56_1","first-page":"e475","article-title":"Feeling different: the experience of living with fetal alcohol spectrum disorder","volume":"18","author":"Stade B","year":"2011","journal-title":"Journal of Population Therapy and Clinical Pharmacology."},{"issue":"3","key":"e_1_2_9_57_1","first-page":"43","article-title":"A Qualitative Investigation into Barriers and Enablers for the Development of a Clinical Pathway for Individuals Living with FASD and Mental Disorder\/Addictions","volume":"38","author":"Anderson T","year":"2018","journal-title":"Canadian Journal of Community Mental Health."},{"key":"e_1_2_9_58_1","doi-asserted-by":"publisher","DOI":"10.3109\/13668250.2016.1267718"},{"issue":"3","key":"e_1_2_9_59_1","first-page":"e405","article-title":"Frequent behavioural challenges in children with fetal alcohol spectrum disorder: a needs\u2010based assessment reported by caregivers and clinicians","volume":"21","author":"Green CR","year":"2014","journal-title":"Journal of Population Therapy and Clinical Pharmacology."},{"key":"e_1_2_9_60_1","doi-asserted-by":"publisher","DOI":"10.1007\/s11469-017-9838-8"},{"key":"e_1_2_9_61_1","doi-asserted-by":"publisher","DOI":"10.1108\/ADD-05-2018-0007"},{"key":"e_1_2_9_62_1","doi-asserted-by":"publisher","DOI":"10.1108\/ADD-07-2020-0014"},{"key":"e_1_2_9_63_1","doi-asserted-by":"publisher","DOI":"10.1177\/070674370505000211"},{"key":"e_1_2_9_64_1","doi-asserted-by":"publisher","DOI":"10.1111\/acer.14733"},{"issue":"1","key":"e_1_2_9_65_1","article-title":"Strengths and Challenges: A young adult pictures FASD through photovoice","volume":"14","author":"Burles M","year":"2018","journal-title":"Review of Disability Studies: An International Journal"},{"key":"e_1_2_9_66_1","doi-asserted-by":"publisher","DOI":"10.1111\/dmcn.15290"},{"key":"e_1_2_9_67_1","doi-asserted-by":"publisher","DOI":"10.1016\/j.ridd.2014.05.001"},{"key":"e_1_2_9_68_1","doi-asserted-by":"publisher","DOI":"10.1007\/s10802-018-00510-5"},{"key":"e_1_2_9_69_1","doi-asserted-by":"publisher","DOI":"10.1111\/j.1467-842X.2005.tb00251.x"},{"issue":"1555","key":"e_1_2_9_70_1","first-page":"59","article-title":"Describing the experience of Indigenous peoples with prenatal alcohol exposure with prenatal alcohol exposure and FASD: a global review of the literature to inform a Kaupapa M\u0101ori study into the experiences of M\u0101ori with FASD","volume":"135","author":"Espiner E","year":"2022","journal-title":"New Zealand Medical Journal."},{"key":"e_1_2_9_71_1","doi-asserted-by":"publisher","DOI":"10.1080\/21642850.2022.2129653"},{"key":"e_1_2_9_72_1","doi-asserted-by":"publisher","DOI":"10.1016\/j.ridd.2020.103683"}],"container-title":["Developmental Medicine &amp; Child Neurology"],"original-title":[],"language":"en","link":[{"URL":"https:\/\/onlinelibrary.wiley.com\/doi\/pdf\/10.1111\/dmcn.15761","content-type":"unspecified","content-version":"vor","intended-application":"similarity-checking"}],"deposited":{"date-parts":[[2025,4,18]],"date-time":"2025-04-18T19:41:58Z","timestamp":1745005318000},"score":1,"resource":{"primary":{"URL":"https:\/\/onlinelibrary.wiley.com\/doi\/10.1111\/dmcn.15761"}},"subtitle":[],"short-title":[],"issued":{"date-parts":[[2023,10,4]]},"references-count":71,"journal-issue":{"issue":"6","published-print":{"date-parts":[[2024,6]]}},"alternative-id":["10.1111\/dmcn.15761"],"URL":"https:\/\/doi.org\/10.1111\/dmcn.15761","archive":["Portico"],"relation":{},"ISSN":["0012-1622","1469-8749"],"issn-type":[{"value":"0012-1622","type":"print"},{"value":"1469-8749","type":"electronic"}],"subject":[],"published":{"date-parts":[[2023,10,4]]},"assertion":[{"value":"2023-04-05","order":0,"name":"received","label":"Received","group":{"name":"publication_history","label":"Publication History"}},{"value":"2023-08-24","order":2,"name":"accepted","label":"Accepted","group":{"name":"publication_history","label":"Publication History"}},{"value":"2023-10-04","order":3,"name":"published","label":"Published","group":{"name":"publication_history","label":"Publication History"}}]}}