ArticleHealth services insights2020
"Managing the Wait": Parents' Experiences in Accessing Diagnostic and Treatment Services for Children and Adolescents Diagnosed With Autism Spectrum Disorder.
Article in Health services insights, 2020. The graph could read no effect estimate from its abstract, so it casts no vote on the map. Cited by 38 papers.
What it found
Each row is one number read from the abstract, on the scale the paper reported it, with its interval. Left of the dashed line favours the treatment, right favours the comparator. Under each row is the sentence it came from. New to these charts? A ten-minute tutorial.
The abstract states no effect estimate the extractor could read, or names no intervention and outcome on the map, so this paper lights no cell and moves no belief. It is still indexed, cited and linked below.
The trial behind it
Trials whose registry record cites this paper, or whose number appears in the abstract. A trial that started after this paper was published is citing it as background, not reporting it.
Neither the registry nor the abstract names a trial number. If this is a trial report, that itself is worth knowing.
Who cites it
38 citing papers in PubMed, 80 citations in OpenAlex.
- From Recognition to Diagnosis: Caregiver Response, Help-Seeking Pathways, and Access-Related Factors Associated with Autism Diagnostic Delay in Jordan.Children (Basel, Switzerland) · 2026Article
- Factors Associated with Extreme Waiting Times for Child Developmental Diagnostic Assessments: A Mixed-Methods Service Evaluation in Sydney.Children (Basel, Switzerland) · 2026Article
- How can we improve the timeliness and quality of diagnostic assessment for children with possible autism? Qualitative findings and recommendations from a Realist Evaluation of Autism Service delivery in the United Kingdom.Autism : the international journal of research and practice · 2026Article
- First Impressions Count: A Systematic Literature Review Exploring Parents of Autistic Children's First Encounters With Healthcare Professionals.Journal of autism and developmental disorders · 2026Article
- Caregiver Perspectives on Priorities and Barriers in Applied Behavior Analysis Service Delivery for Autistic Individuals: A Community-Engaged Sequential Mixed-Methods Study.Journal of autism and developmental disorders · 2026Article
- Understanding Barriers to Caregiver Support Engagement During Their Autistic Youth's Transition to Adulthood: A Qualitative Analysis of Parental Perspectives.Journal of autism and developmental disorders · 2026Article
- Child Autism Spectrum Disorder Following Maternal Abuse and Trauma History.Journal of autism and developmental disorders · 2026Article
- Systematic review: Safety and efficacy of atomoxetine in children and adolescents with autism spectrum disorder.JCPP advances · 2026Article
- Collaborating with an autism community advisory board to develop a family-based, neurodiversity-affirming intervention: PCIT-Autism.Research involvement and engagement · 2025Article
- Household income among families with autistic children and youths in Canada: a cross-sectional matched cohort study.BMJ open · 2025Article
- Cultural and Linguistic Adaptation of an Autism Parent Mediated Intervention for Spanish Speaking Latinos.Journal of autism and developmental disorders · 2025Article
- Access to services for autistic people across Europe.Molecular autism · 2025Article
- Brief Report: Service Referral and Enrollment Following Autism Diagnosis in Primary Care.Research in autism · 2025Article
- Exploring Factors of Diagnostic Timing Among Black Autistic Youth.Journal of autism and developmental disorders · 2025Article
- Racial and Practical Barriers to Diagnostic and Treatment Services for Black Families of Autistic Youth: A Mixed-Method Exploration.Journal of autism and developmental disorders · 2024Article
- Parent-Led Applied Behavior Analysis to Impact Clinical Outcomes for Individuals on the Autism Spectrum: Retrospective Chart Review.JMIR pediatrics and parenting · 2024Article
- A national research survey of childhood autism assessment services in the UK: empirical evidence of diagnostic practice, challenges and improvement opportunities.BMJ paediatrics open · 2024Article
- Family-Centric Applied Behavior Analysis Promotes Sustained Treatment Utilization and Attainment of Patient Goals.Cureus · 2024Article
- Ethical conflicts experienced by community nurses: A qualitative study.Nursing ethics · 2024Article
- The Well-being and Support Needs of Australian Caregivers of Neurodiverse Children.Journal of autism and developmental disorders · 2024Article
Corrections and comments
PubMed lists nothing against this paper. Absence here is not a guarantee, only a check that was made.
Authors and funding
3 authors at 1 institution in 1 country.
Funding
No grant is acknowledged in the PubMed record.
Abstract
backgroundParents of children and adolescents diagnosed with autism spectrum disorder (ASD) report delays in accessing timely diagnostic and treatment services for their children. Research has generally focused on parents' experiences in caring for a child diagnosed with ASD. This study describes the process of how parents access ASD services for their children and adolescents.
methodThis study used a qualitative research design that was informed by grounded theory methodology. We used constant comparative analysis to develop a process model and a core concept.
resultsSeventeen parents of children and adolescents diagnosed with ASD were interviewed. Our process model included 3 main phases: Watchful waiting (noticing suspected behaviors, and searching for assessment and diagnosis); Informed waiting (receiving the diagnosis, facing challenges in accessing treatment services, and realizing the impact of an ASD diagnosis); and Contemplative waiting (pondering the future, reflecting on the past, and making recommendations). "Managing the Wait" was identified as the core category central to parents' experience of this process. This process was found to be impacted by socioeconomic status, parents' skills and capacity to advocate on their child's behalf, and severity of their child's ASD.
conclusionsOur findings illustrate the many barriers families face during their journey in accessing ASD services. Our results illustrate the need to address wait times for services, and provide education and support services for parents as a means of improving their self-advocacy skills, especially for parents of children and adolescents with severe disability.
Indexed as
Identifiers
What OpenQuestion holds
Registered trials
Read under generation 80e0d062 · epoch 390. Bibliography from PubMed, PubMed Central and OpenAlex; grants from NIH RePORTER; trial links from ClinicalTrials.gov; estimates, votes and beliefs from the OpenQuestion graph.