ArticleAutism research : official journal of the International Society for Autism Research2021
Needs assessment in unmet healthcare and family support services: A survey of caregivers of children and youth with autism spectrum disorder in Delaware.
Article in Autism research : official journal of the International Society for Autism Research, 2021. The graph could read no effect estimate from its abstract, so it casts no vote on the map. Cited by 16 papers.
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Who cites it
16 citing papers in PubMed, 32 citations in OpenAlex.
- Characterizing service receipt among families of young autistic children from low-resourced communities.International journal of developmental disabilities · 2026Article
- Care pathways, service access, and psychosociaasl support needs in children and adolescents with autism spectrum disorder: a narrative review.Frontiers in public health · 2026Review
- To study the effect of children diagnosed with autism spectrum disorder on lives of parents and problems, challenges faced by them.Journal of family medicine and primary care · 2025Article
- Enhancing autism care: The role of remote support in parental well-being and child development.World journal of psychiatry · 2025Article
- Modifiable Factors Underlying Caregivers' Psychological Support Needs in Pediatric Disability: Through the Lens of Psycho-Behavioral and Social-Environmental Interactions.Healthcare (Basel, Switzerland) · 2025Article
- Assessment of the Global Integration Method on the parents' perception of functional goals in children and adolescents with autism.Dementia & neuropsychologia · 2025Article
- Analyzing Community-Based Support Requests Made by Black Families Raising Autistic Children.Journal of autism and developmental disorders · 2024Article
- Fewer children with autism spectrum disorder with motor challenges receive physical and recreational therapies compared to standard therapies: A SPARK data set analysis.Autism : the international journal of research and practice · 2024Article
- Parent-Therapist Partnership Survey: Parent Feedback and Psychometric Properties.Journal of autism and developmental disorders · 2024Article
- Motor problems in autism: Co-occurrence or feature?Developmental medicine and child neurology · 2024Review
- Demographic differences in access to health/therapeutic services over first year of the pandemic: a SPARK COVID-19 impact survey analysis.Frontiers in health services · 2024Article
- Developing competencies for volunteer navigators to support caregivers of children living with medical complexity: a mixed-method e-Delphi study.Palliative care and social practice · 2023Article
- CoViD-19 effects on social-emotional development: impact of early intervention.Bioinformation · 2023Article
- Summative content analysis of the recommendations from Project ECHO Ontario Autism.Frontiers in rehabilitation sciences · 2023Article
- Stress, anxiety and depression in parents of children with autism spectrum disorders in Kazakhstan: prevalence and associated factors.Global mental health (Cambridge, England) · 2022Article
- Analysis of the SPARK study COVID-19 parent survey: Early impact of the pandemic on access to services, child/parent mental health, and benefits of online services.Autism research : official journal of the International Society for Autism Research · 2021Article
Corrections and comments
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Authors and funding
4 authors at 2 institutions in 1 country.
Funding
Abstract
The study aimed to collect data from families of children and youth with Autism Spectrum Disorder (ASD) in the state of Delaware, USA to understand their ongoing needs and challenges in accessing child healthcare and family support services. We analyzed responses from 263 caregivers of children and youth with ASD from 3 to 24 years using a statewide needs assessment survey. Over 50% caregivers indicated having unmet needs relative to both child/youth healthcare services and family support services. Between 24 and 38% caregivers expressed unmet needs for healthcare services such as social skills training, speech-language therapy, behavioral intervention, and occupational therapy for their child and 20-24% expressed needs for family support services such as respite care, parent/sibling support groups, counseling, and babysitting support. Additionally, number of prior early interventions received, limitations in accessing healthcare services, and unmet needs for family support services significantly predicted child/youth unmet healthcare needs. Greater ASD severity and difficulties accessing child/youth healthcare services predicted participant's functional dependence on caregivers for activities of daily living. Together, these findings call for designing holistic, family-centered interventions that address needs of both children and youth with ASD and their families. LAY SUMMARY: A statewide needs assessment survey of caregivers of children and youth with ASD revealed that 50% responders had unmet needs relative to both child/youth healthcare services and family support services. Number of prior services received, limitations in accessing healthcare, and unmet needs for family support are linked to child/youth unmet healthcare needs. Severity of autism and difficulties accessing child/youth healthcare are associated with participant's functional dependence. Together, these findings call for placing the family at the heart of the service system in ASD.
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Registered trials
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