7 recherche sur le mot-clé 'Perspectives'

Caregiver perspectives, experiences and service satisfaction, and health service utilization among families of children with developmental disorders at a tertiary center in a low-resource setting / Kirsten A. DONALD in Research in Autism Spectrum Disorders, 110 (February 2024)  

Public ISBD [article]  inResearch in Autism Spectrum Disorders > 110 (February 2024) . - p.102285 Titre : Caregiver perspectives, experiences and service satisfaction, and health service utilization among families of children with developmental disorders at a tertiary center in a low-resource setting Type de document : texte imprimé Auteurs : Kirsten A. DONALD, Auteur Article en page(s) : p.102285 Mots-clés : Neurodevelopmental disorders  Perspectives  Experiences  Satisfaction  Health  Service utilization  Low-resource setting Index. décimale : PER Périodiques Résumé : Background We describe the health perspectives, experiences, and level of service satisfaction among caregivers of children with autism spectrum disorder (ASD) and those with global developmental delays (GDD) attending services at a tertiary paediatric center, and how these influence health services utilization (HSU). Methods In this cross-sectional study, we interviewed caregivers using pre-validated questionnaires to establish their health perspectives, family distress level, healthcare experiences and service satisfaction level. HSU was determined by a review of their medical records in the preceding year. We used descriptive statistics and logistic regression analysis to correlate these variables comparing households with children with ASD versus GDD. Results We enrolled 240 children, 116 had ASD and 124 with GDD, within the age range of 3 8 years, and more males (2:1). Overall, most caregivers believed they had a low understanding of these conditions and that existing treatments were not effective. Both groups reported moderate family distress, mean of 3.3 /10 (SD 1.2), and moderate satisfaction level (68.3%). The mean annual frequency of visits was 12.5, but higher in GDD (13.3 vs 11.5). Overall, households that believed that therapy was able to control the illness recorded higher HSU (p = 0.003). Among families with children with ASD, lower family distress (p = 0.003), and higher general satisfaction (p = 0.06) predicted higher HSU. Conclusion Caregivers hold complex perceptions around these conditions that influence their service usage. There is a need to empower the caregivers, decentralize early intervention services, and adopt family-centered approaches in supporting families, to improve service compliance. En ligne : https://doi.org/10.1016/j.rasd.2023.102285 Permalink : https://www.cra-rhone-alpes.org/cid/opac_css/index.php?lvl=notice_display&id=520 [article] Caregiver perspectives, experiences and service satisfaction, and health service utilization among families of children with developmental disorders at a tertiary center in a low-resource setting [texte imprimé] / Kirsten A. DONALD, Auteur . - p.102285. in Research in Autism Spectrum Disorders > 110 (February 2024) . - p.102285 Mots-clés : Neurodevelopmental disorders  Perspectives  Experiences  Satisfaction  Health  Service utilization  Low-resource setting Index. décimale : PER Périodiques Résumé : Background We describe the health perspectives, experiences, and level of service satisfaction among caregivers of children with autism spectrum disorder (ASD) and those with global developmental delays (GDD) attending services at a tertiary paediatric center, and how these influence health services utilization (HSU). Methods In this cross-sectional study, we interviewed caregivers using pre-validated questionnaires to establish their health perspectives, family distress level, healthcare experiences and service satisfaction level. HSU was determined by a review of their medical records in the preceding year. We used descriptive statistics and logistic regression analysis to correlate these variables comparing households with children with ASD versus GDD. Results We enrolled 240 children, 116 had ASD and 124 with GDD, within the age range of 3 8 years, and more males (2:1). Overall, most caregivers believed they had a low understanding of these conditions and that existing treatments were not effective. Both groups reported moderate family distress, mean of 3.3 /10 (SD 1.2), and moderate satisfaction level (68.3%). The mean annual frequency of visits was 12.5, but higher in GDD (13.3 vs 11.5). Overall, households that believed that therapy was able to control the illness recorded higher HSU (p = 0.003). Among families with children with ASD, lower family distress (p = 0.003), and higher general satisfaction (p = 0.06) predicted higher HSU. Conclusion Caregivers hold complex perceptions around these conditions that influence their service usage. There is a need to empower the caregivers, decentralize early intervention services, and adopt family-centered approaches in supporting families, to improve service compliance. En ligne : https://doi.org/10.1016/j.rasd.2023.102285 Permalink : https://www.cra-rhone-alpes.org/cid/opac_css/index.php?lvl=notice_display&id=520

Getting ready for national service: A preliminary investigation of the perspectives of young autistic pre-enlistees and their caregivers on national service / Pei Yun CHAY in Research in Autism Spectrum Disorders, 69 (January 2020)  

Public ISBD [article]  inResearch in Autism Spectrum Disorders > 69 (January 2020) . - p.101451 Titre : Getting ready for national service: A preliminary investigation of the perspectives of young autistic pre-enlistees and their caregivers on national service Type de document : texte imprimé Auteurs : Pei Yun CHAY, Auteur ; Sin Yean YAM, Auteur ; Christopher Cheng Soon CHEOK, Auteur ; Iliana MAGIATI, Auteur Article en page(s) : p.101451 Langues : Anglais (eng) Mots-clés : Autism  Autism spectrum disorder  National service  Military  Perspectives  Experiences  Transition  Adults  Enlistees  Conscription  Supports Index. décimale : PER Périodiques Résumé : As global rates of diagnoses of autism spectrum disorder (ASD) rise, so too will the number of young adults with ASD who are conscripted into National Service (NS) programs. Given the current lack of studies investigating how NS programs can support and cater to such individuals, and how young people can be supported and prepared for NS, this preliminary cross-sectional mixed methods study aimed to: (a) examine the perspectives on NS of young autistic men prior to their enlistment; and (b) investigate the expected roles of family, schools and NS organisations in supporting individuals with ASD before and during NS. Participants were 13 Singaporean male pre-enlistees with ASD (aged 15-17) and 34 caregivers. Thematic analyses were conducted on participant responses to open ended questions. Overall, autistic participants reported feeling both unprepared and reluctant to serve NS. The thematic analysis identified two main subthemes for both young pre-enlistees and their caregivers: one relating to anticipated opportunities (organized in two subthemes of personal development and social contributions/ relationships); and one focusing on possible anticipated challenges (organized into common NS and ASD-related challenges). Participants hope and expect family, schools and NS organisations to play a substantial role in supporting autistic individuals in preparation for NS and provided several specific recommendations to create an inter-connected network of preparation and support, with NS organisations playing a primary role. Recommendations to improve how NS programs can better support individuals with ASD are provided. En ligne : https://doi.org/10.1016/j.rasd.2019.101451 Permalink : https://www.cra-rhone-alpes.org/cid/opac_css/index.php?lvl=notice_display&id=412 [article] Getting ready for national service: A preliminary investigation of the perspectives of young autistic pre-enlistees and their caregivers on national service [texte imprimé] / Pei Yun CHAY, Auteur ; Sin Yean YAM, Auteur ; Christopher Cheng Soon CHEOK, Auteur ; Iliana MAGIATI, Auteur . - p.101451. Langues : Anglais (eng) in Research in Autism Spectrum Disorders > 69 (January 2020) . - p.101451 Mots-clés : Autism  Autism spectrum disorder  National service  Military  Perspectives  Experiences  Transition  Adults  Enlistees  Conscription  Supports Index. décimale : PER Périodiques Résumé : As global rates of diagnoses of autism spectrum disorder (ASD) rise, so too will the number of young adults with ASD who are conscripted into National Service (NS) programs. Given the current lack of studies investigating how NS programs can support and cater to such individuals, and how young people can be supported and prepared for NS, this preliminary cross-sectional mixed methods study aimed to: (a) examine the perspectives on NS of young autistic men prior to their enlistment; and (b) investigate the expected roles of family, schools and NS organisations in supporting individuals with ASD before and during NS. Participants were 13 Singaporean male pre-enlistees with ASD (aged 15-17) and 34 caregivers. Thematic analyses were conducted on participant responses to open ended questions. Overall, autistic participants reported feeling both unprepared and reluctant to serve NS. The thematic analysis identified two main subthemes for both young pre-enlistees and their caregivers: one relating to anticipated opportunities (organized in two subthemes of personal development and social contributions/ relationships); and one focusing on possible anticipated challenges (organized into common NS and ASD-related challenges). Participants hope and expect family, schools and NS organisations to play a substantial role in supporting autistic individuals in preparation for NS and provided several specific recommendations to create an inter-connected network of preparation and support, with NS organisations playing a primary role. Recommendations to improve how NS programs can better support individuals with ASD are provided. En ligne : https://doi.org/10.1016/j.rasd.2019.101451 Permalink : https://www.cra-rhone-alpes.org/cid/opac_css/index.php?lvl=notice_display&id=412

Parental experiences and perspectives of healthcare providers' genetic testing recommendations for their children diagnosed with autism spectrum disorder in the United States / Shixi ZHAO in Autism Research, 17-12 (December 2024)  

Public ISBD [article]  inAutism Research > 17-12 (December 2024) . - p.2471-2486 Titre : Parental experiences and perspectives of healthcare providers' genetic testing recommendations for their children diagnosed with autism spectrum disorder in the United States Type de document : texte imprimé Auteurs : Shixi ZHAO, Auteur ; Ming LI, Auteur ; Wei-Ju CHEN, Auteur ; Brandon J. RENNIE, Auteur ; Yu-Yu HSIAO, Auteur ; Yue GUAN, Auteur Article en page(s) : p.2471-2486 Langues : Anglais (eng) Mots-clés : autism spectrum disorders  experiences  genetic testing recommendations  healthcare providers  parents  perspectives Index. décimale : PER Périodiques Résumé : Abstract Although genetic testing is recommended for all children diagnosed with autism spectrum disorder (ASD) in the United States, it remains unclear how many parents have received and followed these recommendations. This study aimed to assess parental experiences and perspectives of healthcare providers' genetic testing recommendations. A total of 1043 parents of children with ASD from Simons Foundation Powering Autism Research for Knowledge completed an online survey. Only about one-third of the parents (34.2%) reported that their children's providers had recommended genetic testing. Factors associated with whether parents received these recommendations included the type of healthcare providers diagnosing ASD, parents' knowledge of genetic testing, the age of their children's diagnosis, and the presence of certain co-occurring medical conditions in their children. Our study also revealed that most parents (76.9%) who received recommendations had pursued genetic testing for their children. Adherence to the recommendations was associated with the characteristics of the parents (i.e., age and employment status) and children (i.e., gender), and their trust in the information from providers. The findings highlight the critical role of healthcare providers in facilitating genetic testing among families of children with ASD. Healthcare providers are recommended to increase their competencies and practice in providing genetic testing recommendations for ASD, assist parents in navigating testing challenges, and support parents through the testing process. En ligne : https://dx.doi.org/10.1002/aur.3262 Permalink : https://www.cra-rhone-alpes.org/cid/opac_css/index.php?lvl=notice_display&id=544 [article] Parental experiences and perspectives of healthcare providers' genetic testing recommendations for their children diagnosed with autism spectrum disorder in the United States [texte imprimé] / Shixi ZHAO, Auteur ; Ming LI, Auteur ; Wei-Ju CHEN, Auteur ; Brandon J. RENNIE, Auteur ; Yu-Yu HSIAO, Auteur ; Yue GUAN, Auteur . - p.2471-2486. Langues : Anglais (eng) in Autism Research > 17-12 (December 2024) . - p.2471-2486 Mots-clés : autism spectrum disorders  experiences  genetic testing recommendations  healthcare providers  parents  perspectives Index. décimale : PER Périodiques Résumé : Abstract Although genetic testing is recommended for all children diagnosed with autism spectrum disorder (ASD) in the United States, it remains unclear how many parents have received and followed these recommendations. This study aimed to assess parental experiences and perspectives of healthcare providers' genetic testing recommendations. A total of 1043 parents of children with ASD from Simons Foundation Powering Autism Research for Knowledge completed an online survey. Only about one-third of the parents (34.2%) reported that their children's providers had recommended genetic testing. Factors associated with whether parents received these recommendations included the type of healthcare providers diagnosing ASD, parents' knowledge of genetic testing, the age of their children's diagnosis, and the presence of certain co-occurring medical conditions in their children. Our study also revealed that most parents (76.9%) who received recommendations had pursued genetic testing for their children. Adherence to the recommendations was associated with the characteristics of the parents (i.e., age and employment status) and children (i.e., gender), and their trust in the information from providers. The findings highlight the critical role of healthcare providers in facilitating genetic testing among families of children with ASD. Healthcare providers are recommended to increase their competencies and practice in providing genetic testing recommendations for ASD, assist parents in navigating testing challenges, and support parents through the testing process. En ligne : https://dx.doi.org/10.1002/aur.3262 Permalink : https://www.cra-rhone-alpes.org/cid/opac_css/index.php?lvl=notice_display&id=544

Brief Report: The Experiences of Families of Children with an Autism Spectrum Disorder When Seeking Patient-and Family-Centered Care / Jennifer L. KOUO in Journal of Autism and Developmental Disorders, 52-9 (September 2022)  

Public ISBD [article]  inJournal of Autism and Developmental Disorders > 52-9 (September 2022) . - p.4172-4180 Titre : Brief Report: The Experiences of Families of Children with an Autism Spectrum Disorder When Seeking Patient-and Family-Centered Care Type de document : texte imprimé Auteurs : Jennifer L. KOUO, Auteur ; Theodore S. KOUO, Auteur ; Jillian GALLOGLY, Auteur Article en page(s) : p.4172-4180 Langues : Anglais (eng) Mots-clés : Autism Spectrum Disorder/therapy  Child  Delivery of Health Care  Health Personnel  Humans  Patient-Centered Care  Acute care settings  Autism spectrum disorder  Families  Healthcare  Patient- and family-centered care  Perspectives Index. décimale : PER Périodiques Résumé : Patient-and family-centered care (PFCC) is a partnership among healthcare professionals, patients, and families that is grounded in mutual respect and is an approach that impacts delivery of care, decision-making, and information sharing. PFCC should be implemented for all, including individuals with Autism Spectrum Disorders (ASD), who experience adverse medical encounters despite increased prevalence and healthcare utilization. Insights into the experiences of families during medical experiences can inform clinical practice by increasing healthcare professionals' understanding of the population. Using a mixed-methods approach, the perspectives of 40 families were analyzed. The themes include barriers and opportunities to improve upon the delivery of PFCC, which help to advance healthcare interactions and inform solution-based initiatives to facilitate medical visits that may benefit all patients. En ligne : http://dx.doi.org/10.1007/s10803-021-05272-6 Permalink : https://www.cra-rhone-alpes.org/cid/opac_css/index.php?lvl=notice_display&id=486 [article] Brief Report: The Experiences of Families of Children with an Autism Spectrum Disorder When Seeking Patient-and Family-Centered Care [texte imprimé] / Jennifer L. KOUO, Auteur ; Theodore S. KOUO, Auteur ; Jillian GALLOGLY, Auteur . - p.4172-4180. Langues : Anglais (eng) in Journal of Autism and Developmental Disorders > 52-9 (September 2022) . - p.4172-4180 Mots-clés : Autism Spectrum Disorder/therapy  Child  Delivery of Health Care  Health Personnel  Humans  Patient-Centered Care  Acute care settings  Autism spectrum disorder  Families  Healthcare  Patient- and family-centered care  Perspectives Index. décimale : PER Périodiques Résumé : Patient-and family-centered care (PFCC) is a partnership among healthcare professionals, patients, and families that is grounded in mutual respect and is an approach that impacts delivery of care, decision-making, and information sharing. PFCC should be implemented for all, including individuals with Autism Spectrum Disorders (ASD), who experience adverse medical encounters despite increased prevalence and healthcare utilization. Insights into the experiences of families during medical experiences can inform clinical practice by increasing healthcare professionals' understanding of the population. Using a mixed-methods approach, the perspectives of 40 families were analyzed. The themes include barriers and opportunities to improve upon the delivery of PFCC, which help to advance healthcare interactions and inform solution-based initiatives to facilitate medical visits that may benefit all patients. En ligne : http://dx.doi.org/10.1007/s10803-021-05272-6 Permalink : https://www.cra-rhone-alpes.org/cid/opac_css/index.php?lvl=notice_display&id=486

High School Experiences and Support Recommendations of Autistic Youth / Kristen BOTTEMA-BEUTEL in Journal of Autism and Developmental Disorders, 50-9 (September 2020)  

Public ISBD [article]  inJournal of Autism and Developmental Disorders > 50-9 (September 2020) . - p.3397-3412 Titre : High School Experiences and Support Recommendations of Autistic Youth Type de document : texte imprimé Auteurs : Kristen BOTTEMA-BEUTEL, Auteur ; Josephine CUDA, Auteur ; So Yoon KIM, Auteur ; Shannon CROWLEY, Auteur ; David SCANLON, Auteur Article en page(s) : p.3397-3412 Langues : Anglais (eng) Mots-clés : Autism spectrum disorder  Families  High school  Peers  Perspectives  School-based supports Index. décimale : PER Périodiques Résumé : We used an online survey to gather perspectives of autistic youth (n = 248) on the impacts of autism, school professionals, family members, and peers on their high school experiences; what each stakeholder group could have done better; and what future high school professionals and autistic youth should know. Two-thirds of participants viewed autism as negatively impacting their school experience, and this was more prevalent in women. The majority viewed impacts of school professionals, family, and peers as positive. Women were more likely to view school professional contributions as positive than men, and LGBT youth were more likely to view school professional and peer contributions as negative than non-LGBT youth. Suggestions for stakeholders included providing more help, care, and quality time. En ligne : http://dx.doi.org/10.1007/s10803-019-04261-0 Permalink : https://www.cra-rhone-alpes.org/cid/opac_css/index.php?lvl=notice_display&id=430 [article] High School Experiences and Support Recommendations of Autistic Youth [texte imprimé] / Kristen BOTTEMA-BEUTEL, Auteur ; Josephine CUDA, Auteur ; So Yoon KIM, Auteur ; Shannon CROWLEY, Auteur ; David SCANLON, Auteur . - p.3397-3412. Langues : Anglais (eng) in Journal of Autism and Developmental Disorders > 50-9 (September 2020) . - p.3397-3412 Mots-clés : Autism spectrum disorder  Families  High school  Peers  Perspectives  School-based supports Index. décimale : PER Périodiques Résumé : We used an online survey to gather perspectives of autistic youth (n = 248) on the impacts of autism, school professionals, family members, and peers on their high school experiences; what each stakeholder group could have done better; and what future high school professionals and autistic youth should know. Two-thirds of participants viewed autism as negatively impacting their school experience, and this was more prevalent in women. The majority viewed impacts of school professionals, family, and peers as positive. Women were more likely to view school professional contributions as positive than men, and LGBT youth were more likely to view school professional and peer contributions as negative than non-LGBT youth. Suggestions for stakeholders included providing more help, care, and quality time. En ligne : http://dx.doi.org/10.1007/s10803-019-04261-0 Permalink : https://www.cra-rhone-alpes.org/cid/opac_css/index.php?lvl=notice_display&id=430

L'orthophonie et le recherche / Marine VERDURAND in Rééducation Orthophonique, 257 (Mars 2014)

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The experience of anxiety for autistic children and young people: A thematic synthesis review / Caroline BOND in Research in Autism Spectrum Disorders, 109 (November 2023)  

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