{"status":"ok","message-type":"work","message-version":"1.0.0","message":{"indexed":{"date-parts":[[2026,10,16]],"date-time":"2026-10-16T04:09:39Z","timestamp":1792123779311,"version":"4.4.0"},"reference-count":100,"publisher":"Ovid Technologies (Wolters Kluwer Health)","issue":"1","content-domain":{"domain":["lww.com","ovid.com"],"crossmark-restriction":true},"short-container-title":[],"published-print":{"date-parts":[[2025,1]]},"abstract":"<jats:sec>\n                    <jats:title>Objective:<\/jats:title>\n                    <jats:p>The objectives of this review were to comprehensively identify the best available qualitative evidence on parents\u2019 and guardians\u2019 experiences of barriers and facilitators in accessing autism spectrum disorder (ASD) diagnostic services for their children, and to develop recommendations based on the review for addressing barriers to timely diagnosis and early intervention.<\/jats:p>\n                  <\/jats:sec>\n                  <jats:sec>\n                    <jats:title>Introduction:<\/jats:title>\n                    <jats:p>Early identification of ASD is a priority because the best chance for improving symptoms occurs through early and intensive intervention. A definitive ASD diagnosis is often a prerequisite for children to access publicly funded services, yet obtaining a diagnosis in itself can be stressful, frustrating, and time-consuming for many families. It is essential to understand the barriers and facilitators parents and guardians face in accessing ASD diagnostic services for their children.<\/jats:p>\n                  <\/jats:sec>\n                  <jats:sec>\n                    <jats:title>Inclusion criteria:<\/jats:title>\n                    <jats:p>This qualitative systematic review considered studies conducted worldwide that included parents and guardians of children up to 18 years of age who had accessed or who were attempting to access ASD diagnostic services for their children.<\/jats:p>\n                  <\/jats:sec>\n                  <jats:sec>\n                    <jats:title>Methods:<\/jats:title>\n                    <jats:p>This review was conducted in accordance with the JBI methodology for systematic reviews of qualitative evidence. A literature search included CINAHL (EBSCOhost), CINAHL Plus (EBSCOhost), MEDLINE (EBSCOhost), APA PsycINFO (EBSCOhost), Social Services Abstracts (ProQuest), ERIC (EBSCOhost), and Embase. Gray literature sources included ProQuest Dissertations and Theses, Google Scholar, Google, OpenGrey, other online resources (government and organizational websites), and reference lists of retrieved records. No language, date, or country limits were applied to the searches. Retrieved records from the academic databases, gray literature, and reference lists of retrieved records were screened, with potentially relevant records examined in full against the inclusion criteria. Eligible studies were critically appraised for methodological quality, and those included in this review were subjected to data extraction of descriptive details and study findings relevant to the review question. Study findings were synthesized and assigned confidence scores. All reviewers agreed upon the categories and finalized synthesized findings.<\/jats:p>\n                  <\/jats:sec>\n                  <jats:sec>\n                    <jats:title>Results:<\/jats:title>\n                    <jats:p>The 36 included studies varied in qualitative research designs and were assessed as having high methodological quality. There were 661 eligible participants, and 55 credible and unequivocal research findings were extracted. The research findings yielded 6 categories and 3 synthesized findings with moderate confidence scores. Parents\u2019 and guardians\u2019 ability to access ASD diagnostic services for their children is affected by i) encountering health care providers who actively listened to and addressed parents\u2019 and guardians\u2019 concerns instead of dismissing them, providing a sense of support and validation; ii) facing extended waiting times and associated financial burdens, resulting in frustration and associated financial impact when delays occurred; and iii) encountering health care providers lacking specialized knowledge about ASD, contributing to parents\u2019 and guardians\u2019 confusion due to inaccurate or conflicting diagnoses related to ASD comorbidities.<\/jats:p>\n                  <\/jats:sec>\n                  <jats:sec>\n                    <jats:title>Conclusion:<\/jats:title>\n                    <jats:p>Many parents described their journey in accessing ASD assessment and diagnostic services for their children as cumbersome. Parents\u2019 and guardians\u2019 experiences were affected by the level of perceived support by and knowledge of health care providers; confusion surrounding inaccurate\/mixed diagnoses related to ASD, lengthy delays, and systemic and contextual barriers in navigating the pathway to ASD assessment and diagnosis that included socioeconomic and cultural disparities.<\/jats:p>\n                  <\/jats:sec>\n                  <jats:sec>\n                    <jats:title>Review registration:<\/jats:title>\n                    <jats:p>PROSPERO CRD42018100127<\/jats:p>\n                  <\/jats:sec>","DOI":"10.11124\/jbies-23-00332","type":"journal-article","created":{"date-parts":[[2024,10,30]],"date-time":"2024-10-30T10:07:54Z","timestamp":1730282874000},"page":"6-68","update-policy":"https:\/\/doi.org\/10.1097\/lww.0000000000001000","source":"Crossref","is-referenced-by-count":14,"title":["Parents\u2019 and guardians\u2019 experiences of barriers and facilitators in accessing autism spectrum disorder diagnostic services for their children: a qualitative systematic review"],"prefix":"10.11124","volume":"23","author":[{"ORCID":"https:\/\/orcid.org\/0000-0001-5909-5444","authenticated-orcid":false,"given":"Joanne","family":"Smith-Young","sequence":"first","affiliation":[{"name":"Faculty of Nursing, Memorial University, St. John\u2019s, NL, Canada"},{"name":"Memorial University Nursing Collaboration for Evidence-based Health Care: A JBI Affiliated Group, St. John\u2019s, NL, Canada"}],"role":[{"vocabulary":"crossref","role":"author"}]},{"ORCID":"https:\/\/orcid.org\/0009-0007-9923-3320","authenticated-orcid":false,"given":"April","family":"Pike","sequence":"additional","affiliation":[{"name":"Faculty of Nursing, Memorial University, St. John\u2019s, NL, Canada"},{"name":"Memorial University Nursing Collaboration for Evidence-based Health Care: A JBI Affiliated Group, St. John\u2019s, NL, Canada"}],"role":[{"vocabulary":"crossref","role":"author"}]},{"ORCID":"https:\/\/orcid.org\/0000-0001-6504-4299","authenticated-orcid":false,"given":"Michelle","family":"Swab","sequence":"additional","affiliation":[{"name":"Memorial University Nursing Collaboration for Evidence-based Health Care: A JBI Affiliated Group, St. John\u2019s, NL, Canada"},{"name":"Health Sciences Library, Memorial University, St. John\u2019s, NL, Canada"}],"role":[{"vocabulary":"crossref","role":"author"}]},{"ORCID":"https:\/\/orcid.org\/0000-0002-3367-2319","authenticated-orcid":false,"given":"Roger","family":"Chafe","sequence":"additional","affiliation":[{"name":"Division of Pediatrics, Faculty of Medicine, Memorial University, St. John\u2019s, NL, Canada"}],"role":[{"vocabulary":"crossref","role":"author"}]}],"member":"276","published-online":{"date-parts":[[2025,1,2]]},"reference":[{"issue":"1","key":"R1-20250304","doi-asserted-by":"crossref","first-page":"108","DOI":"10.1186\/1471-2288-14-108","article-title":"Establishing confidence in the output of qualitative research synthesis: the ConQual approach","volume":"14","author":"Munn","year":"2014","journal-title":"BMC Med Res Methodol"},{"issue":"1","key":"R3-20250304","doi-asserted-by":"crossref","first-page":"1","DOI":"10.24095\/hpcdp.37.1.01","article-title":"Environmental factors associated with autism spectrum disorder: a scoping review for the years 2003-2013","volume":"37","author":"Ng","year":"2017","journal-title":"Health Promot Chronic Dis Prev Can"},{"issue":"4","key":"R4-20250304","doi-asserted-by":"crossref","first-page":"389","DOI":"10.1038\/mp.2011.165","article-title":"A review of research trends in physiological abnormalities in autism spectrum disorders: immune dysregulation, inflammation, oxidative stress, mitochondrial dysfunction and environmental toxicant exposures","volume":"17","author":"Rossignol","year":"2012","journal-title":"Mol Psychiatry"},{"issue":"11","key":"R6-20250304","first-page":"1","article-title":"Prevalence and characteristics of autism spectrum disorder among children aged 8 years \u2013 autism and developmental disabilities monitoring network, 11 sites, United States, 2018","volume":"70","author":"Maenner","year":"2021","journal-title":"MMWR"},{"issue":"4","key":"R10-20250304","doi-asserted-by":"crossref","first-page":"862","DOI":"10.1177\/1362361320971107","article-title":"Age at autism spectrum disorder diagnosis: a systematic review and meta-analysis from 2012 to 2019","volume":"25","author":"van\u2019t Hof","year":"2021","journal-title":"Autism"},{"issue":"1","key":"R11-20250304","first-page":"1","article-title":"The lifetime social cost of autism: 1990-2029","volume":"72","author":"Cakir","year":"2020","journal-title":"Res Autism Spectr Disord"},{"issue":"6","key":"R13-20250304","doi-asserted-by":"crossref","first-page":"503","DOI":"10.1136\/jech.2009.104588","article-title":"Age of diagnosis for autism: individual and community factors across 10 birth cohorts","volume":"65","author":"Fountain","year":"2011","journal-title":"J Epidemiol Commun Health"},{"issue":"6","key":"R14-20250304","doi-asserted-by":"crossref","first-page":"543","DOI":"10.2217\/npy.12.59","article-title":"Early comprehensive behaviorally based interventions for children with autism spectrum disorders: a summary of findings from recent reviews and meta-analyses","volume":"2","author":"Magiati","year":"2012","journal-title":"Neuropsychiat"},{"issue":"8","key":"R15-20250304","doi-asserted-by":"crossref","first-page":"408","DOI":"10.1111\/j.1745-7599.2007.00244.x","article-title":"Early detection of autism spectrum disorders: screening between 12 and 24 months of age","volume":"19","author":"Nadel","year":"2007","journal-title":"J Amer Acad Nurs Pract"},{"issue":"1","key":"R16-20250304","doi-asserted-by":"crossref","first-page":"e17","DOI":"10.1542\/peds.2009-0958","article-title":"Randomized, controlled trial of an intervention for toddlers with autism: the Early Start Denver Model","volume":"125","author":"Dawson","year":"2010","journal-title":"Pediatrics"},{"issue":"4","key":"R17-20250304","doi-asserted-by":"crossref","first-page":"247","DOI":"10.1097\/DBP.0000000000000037","article-title":"Intervention for optimal outcome in children and adolescents with a history of autism","volume":"35","author":"Orinstein","year":"2014","journal-title":"J Dev Behav Pediatr"},{"issue":"6","key":"R19-20250304","doi-asserted-by":"crossref","first-page":"1974","DOI":"10.1007\/s10803-016-2716-6","article-title":"Factors affecting age at ASD diagnosis in UK: no evidence that diagnosis age has decreased between 2004 and 2014","volume":"46","author":"Brett","year":"2016","journal-title":"J Autism Dev Disord"},{"issue":"6","key":"R20-20250304","doi-asserted-by":"crossref","first-page":"412","DOI":"10.3109\/01612840.2016.1153174","article-title":"Identifying the barriers to early diagnosis and treatment in underserved individuals with Autism Spectrum Disorder (ASD) and their families: a qualitative study","volume":"37","author":"Elder","year":"2016","journal-title":"Issues Ment Health Nurs"},{"issue":"2","key":"R21-20250304","doi-asserted-by":"crossref","first-page":"147","DOI":"10.3109\/13668250.2014.994171","article-title":"Sociodemographic differences in parental satisfaction with an autism disorder diagnosis","volume":"40","author":"Hildago","year":"2015","journal-title":"J Intellect Dev Disabil"},{"issue":"2","key":"R22-20250304","doi-asserted-by":"crossref","first-page":"90","DOI":"10.24095\/hpcdp.32.2.05","article-title":"Correlates of age at diagnosis of autism spectrum disorders in six Canadian regions","volume":"32","author":"Coo","year":"2012","journal-title":"Chronic Dis Inj Can"},{"issue":"1","key":"R23-20250304","doi-asserted-by":"crossref","first-page":"106","DOI":"10.1177\/1362361315569745","article-title":"Quality versus quantity: the role of socioeconomic status on parent-reported service knowledge, service use, unmet service needs, and barriers to service use","volume":"20","author":"Pickard","year":"2016","journal-title":"Autism"},{"issue":"2","key":"R24-20250304","doi-asserted-by":"crossref","first-page":"239","DOI":"10.1007\/s11469-017-9732-4","article-title":"Access barriers to services by immigrant mothers of children with autism in Canada","volume":"15","author":"Khanlou","year":"2017","journal-title":"Int J Ment Health Addict"},{"issue":"3","key":"R25-20250304","doi-asserted-by":"crossref","first-page":"301","DOI":"10.1016\/j.acap.2013.12.004","article-title":"Latino parents\u2019 perspectives of barriers to autism diagnosis","volume":"14","author":"Zuckerman","year":"2014","journal-title":"Acad Pediatr"},{"issue":"3","key":"R26-20250304","doi-asserted-by":"crossref","first-page":"554","DOI":"10.1016\/j.jpeds.2012.05.012","article-title":"Age at diagnosis of autism spectrum disorders","volume":"161","author":"Valicenti-McDermott","year":"2012","journal-title":"J Pediatr"},{"issue":"5","key":"R27-20250304","doi-asserted-by":"crossref","first-page":"439","DOI":"10.1177\/1362361306066601","article-title":"How many doctors does it take to make an autism spectrum diagnosis?","volume":"10","author":"Goin-Kochel","year":"2006","journal-title":"Autism"},{"issue":"11","key":"R28-20250304","doi-asserted-by":"crossref","first-page":"653","DOI":"10.1007\/s00787-013-0401-2","article-title":"Barriers to, and facilitators of, parenting programmes for childhood behavior problems: a qualitative synthesis of studies of parents\u2019 and professionals\u2019 perceptions","volume":"22","author":"Koerting","year":"2013","journal-title":"Eur Child Adoles Psy"},{"issue":"6","key":"R29-20250304","doi-asserted-by":"crossref","first-page":"784","DOI":"10.1111\/cch.12383","article-title":"Parents\u2019 voices: \u2018why and how we advocate\u2019. A metasynthesis of parents\u2019 experiences of advocating for their child with autism spectrum disorder","volume":"42","author":"Boshoff","year":"2016","journal-title":"Child Care Health Dev"},{"issue":"4","key":"R30-20250304","doi-asserted-by":"crossref","first-page":"356","DOI":"10.1177\/1744629515577876","article-title":"The lived experience of US parents of children with autism spectrum disorders: a systematic review and meta-synthesis","volume":"19","author":"Corcoran","year":"2015","journal-title":"J Intellect Disabil"},{"issue":"4","key":"R31-20250304","doi-asserted-by":"crossref","first-page":"569","DOI":"10.1177\/1049732314552455","article-title":"Parents\u2019 experiences of caring for a child with autism spectrum disorder","volume":"25","author":"DePape","year":"2015","journal-title":"Qual Health Res"},{"issue":"1","key":"R32-20250304","first-page":"745","article-title":"A meta-synthesis on parenting a child with autism","volume":"12","author":"Ooi","year":"2016","journal-title":"Neuropsychiat Dis Treat"},{"issue":"1","key":"R33-20250304","first-page":"8","article-title":"Parental experience of having a child diagnosed with autistic spectrum disorder: an integrative literature review","volume":"39","author":"Keok","year":"2012","journal-title":"Singapore Nurs J"},{"issue":"3","key":"R34-20250304","doi-asserted-by":"crossref","first-page":"629","DOI":"10.1007\/s10803-012-1604-y","article-title":"The impact of parenting stress: a meta-analysis of studies comparing the experience of parenting stress in parents of children with and without autism spectrum disorder","volume":"43","author":"Hayes","year":"2013","journal-title":"J Autism Dev Disord"},{"issue":"12","key":"R35-20250304","doi-asserted-by":"crossref","first-page":"e0186502","DOI":"10.1371\/journal.pone.0186502","article-title":"A systematic review and meta-analysis of comprehensive interventions for pre-school children with autism spectrum disorder (ASD)","volume":"12","author":"Tachibana","year":"2017","journal-title":"PLoS One"},{"issue":"5","key":"R37-20250304","doi-asserted-by":"crossref","first-page":"1141","DOI":"10.11124\/JBISRIR-2017-003437","article-title":"Parents\u2019 and guardians\u2019 experiences of barriers and facilitators in accessing autism spectrum disorder diagnostic services for their children: a systematic review protocol of qualitative evidence","volume":"16","author":"Smith-Young","year":"2018","journal-title":"JBI Database System Rev Implement Rep"},{"issue":"1","key":"R39-20250304","doi-asserted-by":"crossref","first-page":"36","DOI":"10.1097\/XEB.0000000000000152","article-title":"The development of software to support multiple systematic review types: the Joanna Briggs Institute system for the unified management, assessment and review of information (JBI SUMARI)","volume":"17","author":"Munn","year":"2019","journal-title":"Int J Evid Based Healthc"},{"key":"R40-20250304","doi-asserted-by":"crossref","first-page":"n71","DOI":"10.1136\/bmj.n71","article-title":"The PRISMA 2020 statement: an updated guideline for reporting systematic reviews","volume":"372","author":"Page","year":"2021","journal-title":"BMJ"},{"issue":"9","key":"R41-20250304","doi-asserted-by":"crossref","first-page":"1245","DOI":"10.1097\/ACM.0000000000000388","article-title":"Standards for reporting qualitative research: a synthesis of recommendations","volume":"89","author":"O\u2019Brien","year":"2014","journal-title":"Acad Med"},{"issue":"6","key":"R42-20250304","doi-asserted-by":"crossref","first-page":"349","DOI":"10.1093\/intqhc\/mzm042","article-title":"Consolidated criteria for reporting qualitative research (COREQ): a 32-item checklist for interviews and focus groups","volume":"19","author":"Tong","year":"2007","journal-title":"Int J Qual Health Care"},{"issue":"10","key":"R43-20250304","doi-asserted-by":"crossref","first-page":"1425","DOI":"10.1177\/1049732312452937","article-title":"Should we exclude inadequately reported studies from qualitative systematic reviews? A evaluation of sensitivity analyses in two case study reviews","volume":"22","author":"Carroll","journal-title":"Qual Health Res"},{"issue":"3","key":"R44-20250304","doi-asserted-by":"crossref","first-page":"179","DOI":"10.1097\/XEB.0000000000000062","article-title":"Qualitative research synthesis: methodological guidance for systematic reviewers utilizing meta-aggregation","volume":"13","author":"Lockwood","year":"2015","journal-title":"Int J Evid Based Health"},{"key":"R45-20250304","first-page":"196p","article-title":"Perceptions of Arab American mothers of children with autism spectrum disorder: an exploratory study [dissertation]","author":"Alsayyari","year":"2017","journal-title":"University of South Florida"},{"issue":"1","key":"R46-20250304","doi-asserted-by":"crossref","first-page":"28","DOI":"10.1080\/1034912X.2018.1499879","article-title":"Families in transition: parental perspectives of support and services for children with autism in Kazakhstan","volume":"67","author":"An","year":"2018","journal-title":"Intl J Disabil Dev Educ"},{"issue":"6","key":"R47-20250304","doi-asserted-by":"crossref","first-page":"1546","DOI":"10.1177\/1362361320913668","article-title":"When the mask comes off: mothers\u2019 experiences of parenting a daughter with autism spectrum condition","volume":"24","author":"Anderson","year":"2020","journal-title":"Autism"},{"key":"R48-20250304","first-page":"246p","article-title":"A phenomenological study of multiple incidence autism families and school administrator perspectives [dissertation]","author":"Bell","year":"2010","journal-title":"North Carolina State University"},{"issue":"12","key":"R49-20250304","doi-asserted-by":"crossref","first-page":"4124","DOI":"10.1007\/s10803-015-2538-y","article-title":"\u2018On the sidelines\u2019: access to autism-related services in the West Bank","volume":"45","author":"Dababnah","year":"2015","journal-title":"J Autism Dev Disord"},{"issue":"6","key":"R50-20250304","doi-asserted-by":"crossref","first-page":"1921","DOI":"10.1007\/s10803-019-03944-y","article-title":"Blindness and autism: parents\u2019 perspectives on diagnosis challenges, support needs and support provision","volume":"50","author":"de Verdier","year":"2019","journal-title":"J Autism Dev Disord"},{"key":"R51-20250304","first-page":"205p","article-title":"Having a child diagnosed with autism: a phenomenological study of mothers\u2019 experiences [dissertation]","author":"Ducey","year":"2009","journal-title":"University of Northern Colorado"},{"issue":"2-3","key":"R52-20250304","doi-asserted-by":"crossref","first-page":"78","DOI":"10.1080\/03033910.2014.982143","article-title":"Irish parents\u2019 lived experience of learning about and adapting to their child\u2019s autistic spectrum disorder diagnosis and their process of telling their child about their diagnosis","volume":"35","author":"Finnegan","year":"2014","journal-title":"Ir J Psychol"},{"issue":"1","key":"R53-20250304","doi-asserted-by":"crossref","first-page":"275","DOI":"10.1177\/1362361320956876","article-title":"\u2018I just rolled up my sleeves\u2019: mothers\u2019 perspectives on raising girls on the autism spectrum","volume":"25","author":"Fowler","year":"2021","journal-title":"Autism"},{"issue":"4","key":"R54-20250304","doi-asserted-by":"crossref","first-page":"1068","DOI":"10.1177\/13623613221129830","article-title":"Parent experiences of obtaining an autism diagnosis for their daughter: an interpretative phenomenological analysis","volume":"27","author":"Freeman","year":"2023","journal-title":"Autism"},{"issue":"7","key":"R56-20250304","doi-asserted-by":"crossref","first-page":"2265","DOI":"10.1007\/s10803-017-3149-6","article-title":"Fathers\u2019 orientation to their children\u2019s autism diagnosis: a grounded theory study","volume":"47","author":"Hannon","year":"2017","journal-title":"J Autism Dev Disord"},{"key":"R57-20250304","first-page":"128p","article-title":"Hispanic mothers\u2019 experiences of raising children with moderate to severe autism: a phenomenological study [dissertation]","author":"Heslip","year":"2009","journal-title":"Capella University"},{"issue":"7","key":"R58-20250304","doi-asserted-by":"crossref","first-page":"832","DOI":"10.1177\/1362361313508230","article-title":"\u2018Do it yourself\u2019 in the parent-professional partnership for the assessment and diagnosis of children with autism spectrum conditions in Hong Kong: a qualitative study","volume":"18","author":"Ho","year":"2014","journal-title":"Autism"},{"issue":"3","key":"R59-20250304","doi-asserted-by":"crossref","first-page":"e-127300","DOI":"10.5812\/ijpbs-127300","article-title":"Exploring challenges and needs of parents providing care to children with autism spectrum disorders: a qualitative study","volume":"16","author":"Hosseinpour","year":"2022","journal-title":"Iran J Psychiatry Behav Sci"},{"key":"R60-20250304","first-page":"129p","article-title":"A mixed method study of diagnostic and adaptive functioning challenges in African American preschool aged children with autism spectrum disorders [dissertation]","author":"Jackson","year":"2019","journal-title":"Walden University"},{"key":"R61-20250304","first-page":"871p","article-title":"Perspectives of parents who have a child diagnosed with an autism spectrum disorder [dissertation]","author":"Kalash","year":"2009","journal-title":"University of North Dakota"},{"key":"R62-20250304","first-page":"249p","article-title":"Comparative and critical analysis of parental accounts regarding delayed diagnosis of autism spectrum disorder [dissertation]","author":"Kelly","year":"2017","journal-title":"University of Utah"},{"issue":"Suppl 4S","key":"R63-20250304","doi-asserted-by":"crossref","first-page":"S272","DOI":"10.1542\/peds.2016-4300C","article-title":"The diagnostic odyssey of autism spectrum disorder","volume":"141","author":"Lapp\u00e9","year":"2018","journal-title":"Pediatrics"},{"key":"R64-20250304","doi-asserted-by":"crossref","first-page":"1","DOI":"10.3390\/ijerph20085523","article-title":"\u201cKnow your children, who they are, their weakness, and their strongest point\u201d: a qualitative study on Din\u00e9 parent experiences accessing autism services for their children","volume":"20","author":"Lindly","year":"2023","journal-title":"Int J Environ Res Public Health"},{"issue":"Suppl 1","key":"R65-20250304","doi-asserted-by":"crossref","first-page":"S72","DOI":"10.1542\/peds.2019-1895J","article-title":"Parent perceptions about communicating with providers regarding early autism concerns","volume":"145","author":"Locke","year":"2020","journal-title":"Pediatrics"},{"key":"R66-20250304","first-page":"161p","article-title":"Coping with autism during childhood and adulthood: mothers\u2019 journeys towards adaptation [dissertation]","author":"Lutz","year":"2008","journal-title":"Widener University"},{"key":"R67-20250304","first-page":"216p","article-title":"\u2018We didn\u2019t really know what was ahead of us\u2019 family experiences with autism identification, diagnosis, and treatment in the policy context [dissertation]","author":"Mann","year":"2013","journal-title":"University of Delaware"},{"issue":"4","key":"R68-20250304","doi-asserted-by":"crossref","first-page":"311","DOI":"10.1080\/15332985.2012.664487","article-title":"Transparency, hope, and empowerment: a model for partnering with parents of a child with autism spectrum disorder at diagnosis and beyond","volume":"10","author":"Mulligan","year":"2012","journal-title":"Soc Work Ment Health"},{"key":"R69-20250304","first-page":"280p","article-title":"Navigating motherhood and the state: mothers of children with autism spectrum disorder [dissertation]","author":"Newman","year":"2008","journal-title":"University of New Brunswick"},{"issue":"3","key":"R70-20250304","first-page":"1","article-title":"Mothers\u2019 experiences of obtaining a diagnosis and support for their child with autism spectrum disorder","volume":"14","author":"Perlman","year":"2022","journal-title":"Can J Fam Youth"},{"key":"R71-20250304","first-page":"156p","article-title":"A narrative analysis of motherhood and maternal-efficacy among women raising children with ASD [dissertation]","author":"Piepenbring","year":"2017","journal-title":"Fordham University"},{"issue":"8","key":"R72-20250304","doi-asserted-by":"crossref","first-page":"397","DOI":"10.3390\/educsci11080397","article-title":"\u201cThere isn\u2019t really anything around here\u2026\u201d: autism, education and the experience of families living in rural coastal England","volume":"11","author":"Preece","year":"2021","journal-title":"Educ Sci"},{"issue":"5","key":"R73-20250304","doi-asserted-by":"crossref","first-page":"474","DOI":"10.1177\/1043659620970634","article-title":"Parenting a child with autism spectrum disorder: perspective of Jordanian mothers","volume":"32","author":"Shattnawi","year":"2021","journal-title":"J Trancult Nurs"},{"issue":"1","key":"R74-20250304","first-page":"1","article-title":"\u201cManaging the wait\u201d: parents\u2019 experiences in accessing diagnostic and treatment services for children and adolescents diagnosed with autism spectrum disorder","volume":"13","author":"Smith-Young","year":"2020","journal-title":"Health Serv Insights"},{"issue":"1","key":"R75-20250304","first-page":"1","article-title":"\u201cI know how to advocate\u201d: parents\u2019 experiences in advocating for children and youth diagnosed with autism spectrum disorder","volume":"15","author":"Smith-Young","year":"2022","journal-title":"Health Serv Insights"},{"key":"R76-20250304","first-page":"201p","article-title":"A phenomenological study of mothers\u2019 experiences navigating issues of stigma related to autism in the context of Saudi Arabia [dissertation]","author":"Sulaimani","year":"2018","journal-title":"Ohio University"},{"key":"R77-20250304","first-page":"161p","article-title":"Parent satisfaction with family professional partnerships and services for children with autism spectrum disorder [dissertation]","author":"Templeman","year":"2019","journal-title":"Seton Hall University"},{"key":"R78-20250304","first-page":"206p","article-title":"\u2018It is difficult but you experience a beautiful thing\u2019: perspectives of Latina\/o parents on autism [dissertation]","author":"Truett","year":"2012","journal-title":"Northern Arizona University"},{"key":"R79-20250304","first-page":"168p","article-title":"Lived experiences of mothers raising children with autism spectrum disorder in Nigeria [dissertation]","author":"Ulofoshio","year":"2017","journal-title":"Walden University"},{"key":"R80-20250304","doi-asserted-by":"crossref","first-page":"247","DOI":"10.1007\/s10882-022-09864-7","article-title":"\u201cYou had this clean window, but it was glued shut\u201d: identifying the needs of parents and providers of children and youth with autism spectrum disorders in rural areas through a life course perspective","volume":"35","author":"Vanegas","year":"2023","journal-title":"J Dev Phys Disabil"},{"issue":"8","key":"R81-20250304","first-page":"10","article-title":"Accessing a diagnosis for a child with an autism spectrum disorder: the burden is on the caregiver","volume":"11","author":"Bloch","year":"2007","journal-title":"Am J Nurse Pract"},{"issue":"3","key":"R82-20250304","doi-asserted-by":"crossref","first-page":"405","DOI":"10.1007\/s11013-013-9323-1","article-title":"Changes in the diagnosis of autism: how parents and professionals act and react in France","volume":"37","author":"Chamak","year":"2013","journal-title":"Cult Med Psychiatry"},{"issue":"4","key":"R83-20250304","doi-asserted-by":"crossref","first-page":"388","DOI":"10.1177\/1362361316680915","article-title":"How Taiwanese parents of children with autism spectrum disorder experience the process of obtaining a diagnosis: a descriptive phenomenological analysis","volume":"22","author":"Chao","year":"2018","journal-title":"Autism"},{"issue":"9","key":"R84-20250304","doi-asserted-by":"crossref","first-page":"711","DOI":"10.1097\/DBP.0000000000000965","article-title":"Exploring the experiences of families of Latino children newly diagnosed with autism spectrum disorder","volume":"42","author":"Coffield","year":"2021","journal-title":"J Dev Behav Pediatr"},{"issue":"3","key":"R85-20250304","doi-asserted-by":"crossref","first-page":"293","DOI":"10.1080\/02667363.2013.841128","article-title":"A support group for parents of children on a waiting list for an assessment for autism spectrum disorder","volume":"29","author":"Connolly","year":"2013","journal-title":"Educ Psychol Pract"},{"issue":"4","key":"R86-20250304","doi-asserted-by":"crossref","first-page":"246","DOI":"10.1177\/1088357620922165","article-title":"Autism spectrum disorder identification, diagnosis, and navigation of services: learning from the voices of caregivers","volume":"35","author":"Crais","year":"2020","journal-title":"Focus Autism Other Dev Disabl"},{"issue":"3","key":"R87-20250304","doi-asserted-by":"crossref","first-page":"180","DOI":"10.1177\/10883576050200030601","article-title":"Experiences of families with children with autism in rural New England","volume":"20","author":"Hutton","year":"2005","journal-title":"Focus Autism Other Dev Disabl"},{"issue":"3","key":"R88-20250304","doi-asserted-by":"crossref","first-page":"273","DOI":"10.1177\/1362361399003003005","article-title":"The experience of parents in the diagnosis of autism. A pilot study","volume":"3","author":"Midence","year":"1999","journal-title":"Autism"},{"issue":"1","key":"R89-20250304","doi-asserted-by":"crossref","first-page":"49","DOI":"10.2989\/17280583.2013.849606","article-title":"The search for a timely diagnosis: parents\u2019 experiences of their child being diagnosed with an autistic spectrum disorder","volume":"26","author":"Mitchell","year":"2014","journal-title":"J Child Adolesc Ment Health"},{"issue":"4","key":"R90-20250304","doi-asserted-by":"crossref","first-page":"344","DOI":"10.1080\/10522158.2014.903581","article-title":"Parent-caregiver experiences with the autism spectrum disorder service delivery system","volume":"17","author":"Moodie-Dyer","year":"2014","journal-title":"J Fam Soc Work"},{"issue":"1","key":"R91-20250304","first-page":"17","article-title":"African American parents\u2019 perceptions of diagnosis and services for children with autism","volume":"53","author":"Pearson","year":"2018","journal-title":"Educ Train Autism Dev Disabil"},{"issue":"598","key":"R92-20250304","doi-asserted-by":"crossref","first-page":"e378","DOI":"10.3399\/bjgp12X641500","article-title":"\u2018You know what boys are like\u2019: pre-diagnosis experiences of parents of children with autism spectrum conditions","volume":"62","author":"Ryan","year":"2012","journal-title":"Br J Gen Pract"},{"issue":"4","key":"R93-20250304","doi-asserted-by":"crossref","first-page":"257","DOI":"10.1097\/DBP.0000000000000660","article-title":"Parent and provider perspectives on the diagnosis and management of autism in a Chinese immigrant population","volume":"40","author":"Sakai","year":"2019","journal-title":"J Dev Behav Pediatr"},{"issue":"4","key":"R94-20250304","doi-asserted-by":"crossref","first-page":"1164","DOI":"10.1007\/s10803-015-2650-z","article-title":"Understanding Hong Kong Chinese families\u2019 experiences of an autism\/ASD diagnosis","volume":"46","author":"Tait","year":"2016","journal-title":"J Autism Dev Disord"},{"issue":"12","key":"R95-20250304","doi-asserted-by":"crossref","first-page":"68","DOI":"10.11114\/jets.v6i12.3692","article-title":"Autism spectrum disorder: experiences of mothers before and after their children\u2019s diagnosis and implications for early special education services","volume":"6","author":"Tekinarslan","year":"2018","journal-title":"J Educ Train Stud"},{"issue":"3","key":"R96-20250304","doi-asserted-by":"crossref","first-page":"297","DOI":"10.1037\/ort0000433","article-title":"Parents\u2019 experiences of screening, diagnosis, and intervention for chidren with autism spectrum disorder","volume":"90","author":"Yi","year":"2020","journal-title":"Am J Orthopsychiatry"},{"issue":"1","key":"R97-20250304","first-page":"76","article-title":"Current status of health and social services for children with autism in Iran: parents\u2019 perspectives","volume":"14","author":"Zarafshan","year":"2019","journal-title":"Iran J Psychiatry"},{"issue":"2","key":"R99-20250304","doi-asserted-by":"crossref","first-page":"e2022056594","DOI":"10.1542\/peds.2022-056594","article-title":"Prevalence and disparities in the detection of autism without intellectual disability","volume":"151","author":"Shenouda","year":"2023","journal-title":"Pediatrics"},{"issue":"6","key":"R100-20250304","doi-asserted-by":"crossref","first-page":"274","DOI":"10.11124\/JBISRIR-2016-002219","article-title":"The influence of workplace culture on nurses\u2019 learning experiences. A systematic review of qualitative evidence","volume":"14","author":"Davis","year":"2016","journal-title":"JBI Database System Rev Implement Rep"},{"issue":"4","key":"R101-20250304","doi-asserted-by":"crossref","first-page":"533","DOI":"10.1007\/s10826-011-9506-8","article-title":"Parent perspectives on community mental health services for children with autism spectrum disorders","volume":"21","author":"Brookman-Frazee","year":"2012","journal-title":"J Child Fam Stud"},{"issue":"2","key":"R102-20250304","doi-asserted-by":"crossref","first-page":"305","DOI":"10.1007\/s40615-019-00659-9","article-title":"Parent and professional experiences supporting African-American children with autism","volume":"7","author":"Pearson","year":"2020","journal-title":"J Racial Ethn Health Disparities"},{"issue":"Suppl 1","key":"R103-20250304","doi-asserted-by":"crossref","first-page":"10","DOI":"10.1542\/peds.2014-3667C","article-title":"Early identification of autism spectrum disorder: recommendations for practice and research","volume":"136","author":"Zwaigenbaum","year":"2015","journal-title":"Pediatr"},{"issue":"8","key":"R104-20250304","doi-asserted-by":"crossref","first-page":"1897","DOI":"10.1177\/1362361319841488","article-title":"UK parents\u2019 experiences of their child receiving a diagnosis of autism spectrum disorder: a systematic review of the qualitative evidence","volume":"23","author":"Legg","year":"2019","journal-title":"Autism"},{"issue":"3","key":"R105-20250304","first-page":"143","article-title":"A meta-synthesis of how parents of children with autism describe their experience of advocating for their children during the process of diagnosis","volume":"27","author":"Boshoff","year":"2019","journal-title":"Health Soc Care Community"},{"issue":"3","key":"R106-20250304","doi-asserted-by":"crossref","first-page":"153","DOI":"10.3109\/01612840.2015.1116030","article-title":"Stress and parents of children with autism: a review of the literature","volume":"37","author":"Bonis","year":"2016","journal-title":"Issues Ment Health Nurs"},{"issue":"4","key":"R107-20250304","doi-asserted-by":"crossref","first-page":"454","DOI":"10.1007\/s40489-020-00225-8","article-title":"Barriers to autism spectrum disorder diagnosis for young women and girls: a systematic review","volume":"8","author":"Estrin","year":"2021","journal-title":"Rev J Autism Dev Disord"},{"issue":"6","key":"R108-20250304","doi-asserted-by":"crossref","first-page":"796","DOI":"10.1177\/1049732318808245","article-title":"Autism disparities: a systematic review and meta-ethnography of qualitative research","volume":"29","author":"Singh","year":"2019","journal-title":"Qual Health Res"},{"issue":"3","key":"R109-20250304","first-page":"4","article-title":"A phenomenological examination of the influence of culture on treating and caring for Hispanic children with autism","volume":"29","author":"Estrada","year":"2014","journal-title":"Int J Spec Educ"},{"key":"R110-20250304","doi-asserted-by":"crossref","first-page":"76","DOI":"10.1186\/s12961-019-0467-5","article-title":"Qualitative evidence synthesis (QES) for guidelines: paper 1 - using qualitative evidence synthesis to inform guideline scope and develop qualitative findings statements","volume":"17","author":"Downe","year":"2019","journal-title":"Health Res Policy Systems"},{"issue":"8","key":"R112-20250304","doi-asserted-by":"crossref","first-page":"1869","DOI":"10.11124\/JBIES-22-00272","article-title":"Compounding conflicts of interest: including an author\u2019s own work in a systematic review","volume":"20","author":"Aromataris","year":"2022","journal-title":"JBI Evid Synth"}],"container-title":["JBI Evidence Synthesis"],"original-title":[],"language":"en","link":[{"URL":"https:\/\/www.ovid.com\/10.11124\/JBIES-23-00332","content-type":"unspecified","content-version":"vor","intended-application":"similarity-checking"}],"deposited":{"date-parts":[[2026,8,11]],"date-time":"2026-08-11T13:01:25Z","timestamp":1786453285000},"score":1,"resource":{"primary":{"URL":"https:\/\/www.ovid.com\/10.11124\/JBIES-23-00332"}},"subtitle":[],"short-title":[],"issued":{"date-parts":[[2025,1]]},"references-count":100,"journal-issue":{"issue":"1","published-print":{"date-parts":[[2025]]}},"URL":"https:\/\/doi.org\/10.11124\/jbies-23-00332","relation":{},"ISSN":["2689-8381"],"issn-type":[{"value":"2689-8381","type":"electronic"}],"subject":[],"published":{"date-parts":[[2025,1]]}}}