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Needs assessment in unmet healthcare and family support services: A survey of caregivers of children and youth with autism spectrum disorder in Delaware / S. SRINIVASAN in Autism Research, 14-8 (August 2021)
[article]
Titre : Needs assessment in unmet healthcare and family support services: A survey of caregivers of children and youth with autism spectrum disorder in Delaware Type de document : Texte imprimé et/ou numérique Auteurs : S. SRINIVASAN, Auteur ; A. EKBLADH, Auteur ; B. FREEDMAN, Auteur ; Anjana N. BHAT, Auteur Article en page(s) : p.1736-1758 Langues : Anglais (eng) Mots-clés : Activities of Daily Living Adolescent Autism Spectrum Disorder/therapy Caregivers Child Counseling Delaware Health Services Accessibility Health Services Needs and Demand Humans Needs Assessment Autism Spectrum Disorder caregivers children and youth family support healthcare needs assessment unmet needs declare. Index. décimale : PER Périodiques Résumé : 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. En ligne : http://dx.doi.org/10.1002/aur.2514 Permalink : https://www.cra-rhone-alpes.org/cid/opac_css/index.php?lvl=notice_display&id=449
in Autism Research > 14-8 (August 2021) . - p.1736-1758[article] Needs assessment in unmet healthcare and family support services: A survey of caregivers of children and youth with autism spectrum disorder in Delaware [Texte imprimé et/ou numérique] / S. SRINIVASAN, Auteur ; A. EKBLADH, Auteur ; B. FREEDMAN, Auteur ; Anjana N. BHAT, Auteur . - p.1736-1758.
Langues : Anglais (eng)
in Autism Research > 14-8 (August 2021) . - p.1736-1758
Mots-clés : Activities of Daily Living Adolescent Autism Spectrum Disorder/therapy Caregivers Child Counseling Delaware Health Services Accessibility Health Services Needs and Demand Humans Needs Assessment Autism Spectrum Disorder caregivers children and youth family support healthcare needs assessment unmet needs declare. Index. décimale : PER Périodiques Résumé : 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. En ligne : http://dx.doi.org/10.1002/aur.2514 Permalink : https://www.cra-rhone-alpes.org/cid/opac_css/index.php?lvl=notice_display&id=449 Needs assessment in genetic testing education: A survey of parents of children with autism spectrum disorder in the united states / S. ZHAO in Autism Research, 12-8 (August 2019)
[article]
Titre : Needs assessment in genetic testing education: A survey of parents of children with autism spectrum disorder in the united states Type de document : Texte imprimé et/ou numérique Auteurs : S. ZHAO, Auteur ; W. J. CHEN, Auteur ; S. U. DHAR, Auteur ; T. N. EBLE, Auteur ; O. M. KWOK, Auteur ; L. S. CHEN, Auteur Article en page(s) : p.1162-1170 Langues : Anglais (eng) Mots-clés : autism spectrum disorder genetic testing health education needs assessment parents Index. décimale : PER Périodiques Résumé : Understanding parents' educational needs concerning genetic testing for their children with autism spectrum disorder (ASD) is important in developing tailored, evidence-based health education materials for clinical use. Since research is lacking in this area, to bridge the gap, we examined genetic testing education needs using a nationwide sample of parents of biological children with ASD in the United States. Prospective participants were recruited from the interactive autism network, and 552 parents of biological children with ASD completed the online survey. Most participants (73.7%) were interested in receiving health education about genetic testing. Yet, the majority of them (64.7%) reported that they did not receive the information needed from physicians. Parents who identified as racial/ethnic minorities (P = 0.029), who had an education degree below college (P = 0.002), or displayed low/no awareness of genetic testing (P = 0.003) were more interested in receiving health education regarding genetic testing. Parents' most desired topics for health education include the accuracy of genetic testing (88.4%), cost (85.9%), relevant benefits of such testing (83.8%), testing procedure (77.8%), eligibility to undergo genetic testing for their children with ASD (62.4%), potential harms caused by genetic testing (56.1%), previous use and experience among individuals affected by ASD (50.8%), and confidentiality issues (48.0%). Furthermore, web-based education was the preferable approach (85.4%). Our findings can help develop health education programs and/or materials regarding genetic testing for parents and physicians to facilitate better physician-parent communication and assist parents in making informed medical decisions regarding genetic testing. Autism Res 2019, 12: 1162-1170. (c) 2019 International Society for Autism Research, Wiley Periodicals, Inc. LAY SUMMARY: This study examined educational needs on genetic testing among 552 American parents of children with autism spectrum disorder (ASD). Results showed that most parents expressed interests in receiving health education regarding genetic testing (73.7%) and favored online education resources (85.4%). Preferred topics included accuracy, cost, and testing benefits. Our findings can help develop genetic testing related health education programs and materials for parents of children with ASD. En ligne : http://dx.doi.org/10.1002/aur.2152 Permalink : https://www.cra-rhone-alpes.org/cid/opac_css/index.php?lvl=notice_display&id=405
in Autism Research > 12-8 (August 2019) . - p.1162-1170[article] Needs assessment in genetic testing education: A survey of parents of children with autism spectrum disorder in the united states [Texte imprimé et/ou numérique] / S. ZHAO, Auteur ; W. J. CHEN, Auteur ; S. U. DHAR, Auteur ; T. N. EBLE, Auteur ; O. M. KWOK, Auteur ; L. S. CHEN, Auteur . - p.1162-1170.
Langues : Anglais (eng)
in Autism Research > 12-8 (August 2019) . - p.1162-1170
Mots-clés : autism spectrum disorder genetic testing health education needs assessment parents Index. décimale : PER Périodiques Résumé : Understanding parents' educational needs concerning genetic testing for their children with autism spectrum disorder (ASD) is important in developing tailored, evidence-based health education materials for clinical use. Since research is lacking in this area, to bridge the gap, we examined genetic testing education needs using a nationwide sample of parents of biological children with ASD in the United States. Prospective participants were recruited from the interactive autism network, and 552 parents of biological children with ASD completed the online survey. Most participants (73.7%) were interested in receiving health education about genetic testing. Yet, the majority of them (64.7%) reported that they did not receive the information needed from physicians. Parents who identified as racial/ethnic minorities (P = 0.029), who had an education degree below college (P = 0.002), or displayed low/no awareness of genetic testing (P = 0.003) were more interested in receiving health education regarding genetic testing. Parents' most desired topics for health education include the accuracy of genetic testing (88.4%), cost (85.9%), relevant benefits of such testing (83.8%), testing procedure (77.8%), eligibility to undergo genetic testing for their children with ASD (62.4%), potential harms caused by genetic testing (56.1%), previous use and experience among individuals affected by ASD (50.8%), and confidentiality issues (48.0%). Furthermore, web-based education was the preferable approach (85.4%). Our findings can help develop health education programs and/or materials regarding genetic testing for parents and physicians to facilitate better physician-parent communication and assist parents in making informed medical decisions regarding genetic testing. Autism Res 2019, 12: 1162-1170. (c) 2019 International Society for Autism Research, Wiley Periodicals, Inc. LAY SUMMARY: This study examined educational needs on genetic testing among 552 American parents of children with autism spectrum disorder (ASD). Results showed that most parents expressed interests in receiving health education regarding genetic testing (73.7%) and favored online education resources (85.4%). Preferred topics included accuracy, cost, and testing benefits. Our findings can help develop genetic testing related health education programs and materials for parents of children with ASD. En ligne : http://dx.doi.org/10.1002/aur.2152 Permalink : https://www.cra-rhone-alpes.org/cid/opac_css/index.php?lvl=notice_display&id=405 Information needs in genetic testing: A needs assessment survey among Taiwanese parents of children with autism spectrum disorders / L. S. CHEN in Autism, 23-4 (May 2019)
[article]
Titre : Information needs in genetic testing: A needs assessment survey among Taiwanese parents of children with autism spectrum disorders Type de document : Texte imprimé et/ou numérique Auteurs : L. S. CHEN, Auteur ; J. MIN, Auteur ; S. ZHAO, Auteur ; Y. C. YEH, Auteur ; T. Y. HUANG, Auteur Article en page(s) : p.902-909 Langues : Anglais (eng) Mots-clés : Autism spectrum disorders education genetic testing needs assessment Index. décimale : PER Périodiques Résumé : We conducted the first needs assessment study by examining the information needs in genetic testing for autism spectrum disorders among parents of children with autism spectrum disorders in Taiwan. Parents of children with autism spectrum disorders in 236 public elementary schools with special education services were invited to complete a survey. About two-thirds of participants (65.7%) had never heard about genetic testing for autism spectrum disorders. Yet, the majority (71.4%) expressed an interest in learning about this testing. The top three topics participants identified to assist them in making informed decisions before undergoing genetic testing (for themselves, their affected children, or other family members) were testing accuracy (79.7%), genetic causes of autism spectrum disorders (79.4%), and the link between testing and treatment (79.4%). A health education brochure (47.2%) was the most desired educational approach. Our results can be utilized to develop information and counseling materials for genetic testing for autism spectrum disorders in Taiwan as well as to address the needs of parents of children with autism spectrum disorders, particularly in informed decisions-making. Moreover, to promote better communication between the providers and parents, when discussing genetic testing for autism spectrum disorders with Taiwanese parents of children with autism spectrum disorders, healthcare professionals' priorities should be in line with the preferred topics identified in this study. En ligne : http://dx.doi.org/10.1177/1362361318778903 Permalink : https://www.cra-rhone-alpes.org/cid/opac_css/index.php?lvl=notice_display&id=397
in Autism > 23-4 (May 2019) . - p.902-909[article] Information needs in genetic testing: A needs assessment survey among Taiwanese parents of children with autism spectrum disorders [Texte imprimé et/ou numérique] / L. S. CHEN, Auteur ; J. MIN, Auteur ; S. ZHAO, Auteur ; Y. C. YEH, Auteur ; T. Y. HUANG, Auteur . - p.902-909.
Langues : Anglais (eng)
in Autism > 23-4 (May 2019) . - p.902-909
Mots-clés : Autism spectrum disorders education genetic testing needs assessment Index. décimale : PER Périodiques Résumé : We conducted the first needs assessment study by examining the information needs in genetic testing for autism spectrum disorders among parents of children with autism spectrum disorders in Taiwan. Parents of children with autism spectrum disorders in 236 public elementary schools with special education services were invited to complete a survey. About two-thirds of participants (65.7%) had never heard about genetic testing for autism spectrum disorders. Yet, the majority (71.4%) expressed an interest in learning about this testing. The top three topics participants identified to assist them in making informed decisions before undergoing genetic testing (for themselves, their affected children, or other family members) were testing accuracy (79.7%), genetic causes of autism spectrum disorders (79.4%), and the link between testing and treatment (79.4%). A health education brochure (47.2%) was the most desired educational approach. Our results can be utilized to develop information and counseling materials for genetic testing for autism spectrum disorders in Taiwan as well as to address the needs of parents of children with autism spectrum disorders, particularly in informed decisions-making. Moreover, to promote better communication between the providers and parents, when discussing genetic testing for autism spectrum disorders with Taiwanese parents of children with autism spectrum disorders, healthcare professionals' priorities should be in line with the preferred topics identified in this study. En ligne : http://dx.doi.org/10.1177/1362361318778903 Permalink : https://www.cra-rhone-alpes.org/cid/opac_css/index.php?lvl=notice_display&id=397 Needs of Adolescents and Young Adults with Neurodevelopmental Disorders: Comparisons of Young People and Parent Perspectives / H. EKLUND in Journal of Autism and Developmental Disorders, 48-1 (January 2018)
[article]
Titre : Needs of Adolescents and Young Adults with Neurodevelopmental Disorders: Comparisons of Young People and Parent Perspectives Type de document : Texte imprimé et/ou numérique Auteurs : H. EKLUND, Auteur ; J. FINDON, Auteur ; T. CADMAN, Auteur ; H. HAYWARD, Auteur ; D. MURPHY, Auteur ; Philip ASHERSON, Auteur ; K. GLASER, Auteur ; K. XENITIDIS, Auteur Article en page(s) : p.83-91 Langues : Anglais (eng) Mots-clés : Adhd Asd Needs assessment Neurodevelopmental disorders Young adulthood Index. décimale : PER Périodiques Résumé : This study used the Camberwell Assessment of Need for adults with Developmental and Intellectual Disabilities (CANDID) to examine the social, physical health and mental health needs of 168 young people (aged 14-24 years) with neurodevelopmental disorders and compared young person and parent ratings of need. Agreement was poor in 21 out of 25 domains. Parents consistently reported higher levels of need than young people in the majority of domains although young people with ADHD reported significantly more needs in physical health, eyesight/hearing, seizures, other mental health problems and safety of others than their parents. Both parent and young person perspectives of needs are necessary to ensure that needs that are predictive of current or future poor outcomes are not missed. En ligne : https://doi.org/10.1007/s10803-017-3295-x Permalink : https://www.cra-rhone-alpes.org/cid/opac_css/index.php?lvl=notice_display&id=336
in Journal of Autism and Developmental Disorders > 48-1 (January 2018) . - p.83-91[article] Needs of Adolescents and Young Adults with Neurodevelopmental Disorders: Comparisons of Young People and Parent Perspectives [Texte imprimé et/ou numérique] / H. EKLUND, Auteur ; J. FINDON, Auteur ; T. CADMAN, Auteur ; H. HAYWARD, Auteur ; D. MURPHY, Auteur ; Philip ASHERSON, Auteur ; K. GLASER, Auteur ; K. XENITIDIS, Auteur . - p.83-91.
Langues : Anglais (eng)
in Journal of Autism and Developmental Disorders > 48-1 (January 2018) . - p.83-91
Mots-clés : Adhd Asd Needs assessment Neurodevelopmental disorders Young adulthood Index. décimale : PER Périodiques Résumé : This study used the Camberwell Assessment of Need for adults with Developmental and Intellectual Disabilities (CANDID) to examine the social, physical health and mental health needs of 168 young people (aged 14-24 years) with neurodevelopmental disorders and compared young person and parent ratings of need. Agreement was poor in 21 out of 25 domains. Parents consistently reported higher levels of need than young people in the majority of domains although young people with ADHD reported significantly more needs in physical health, eyesight/hearing, seizures, other mental health problems and safety of others than their parents. Both parent and young person perspectives of needs are necessary to ensure that needs that are predictive of current or future poor outcomes are not missed. En ligne : https://doi.org/10.1007/s10803-017-3295-x Permalink : https://www.cra-rhone-alpes.org/cid/opac_css/index.php?lvl=notice_display&id=336