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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)
[article]
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 et/ou numérique 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
in Research in Autism Spectrum Disorders > 110 (February 2024) . - p.102285[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 et/ou numérique] / 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 Parent peer coaching program: A cascading intervention for parents of children with autism in Mongolia / James D. LEE in Autism, 26-8 (November 2022)
[article]
Titre : Parent peer coaching program: A cascading intervention for parents of children with autism in Mongolia Type de document : Texte imprimé et/ou numérique Auteurs : James D. LEE, Auteur ; Hedda MEADAN, Auteur ; Enkhjin OYUNBAATAR, Auteur Article en page(s) : p.1999-2014 Langues : Anglais (eng) Mots-clés : Child Humans Autistic Disorder/therapy Mentoring Mongolia Autism Spectrum Disorder/therapy Parents/education capacity building low-resource setting parent peer coaching Index. décimale : PER Périodiques Résumé : Parents of children with autism are known to experience severe hardships related to raising their children. These hardships are exacerbated in low-resource settings internationally where there is very little resource for children and their families, including professionals who provide evidence-based treatment. Mongolia was chosen as an example of such low-resource settings in this single-case research, and four parent mentors and five parent peers and their children with autism participated and completed the study. A local parent group, the Autism Association of Mongolia, was actively involved in this study and helped with recruitment, development, adaptation, and implementation of the intervention to increase acceptability and feasibility. In addition, a local bilingual research assistant was also utilized as the purpose of this study was to build capacity of diverse stakeholders of children with autism in Mongolia. The research assistant was trained and coached by the research team on both content (communication teaching strategies and behavior management) and delivery (coaching adults), who then provided coaching to parent mentors via live videoconferencing in Mongolian. Parent mentors then similarly provided coaching to parent peers after observing the interactions with their children with autism. The findings suggest that parents can effectively deliver high-fidelity coaching to disseminate evidence-based treatment in low-resource settings when given proper training and coaching. Further examination on scalability and sustainment of effects is suggested. En ligne : http://dx.doi.org/10.1177/13623613211070636 Permalink : https://www.cra-rhone-alpes.org/cid/opac_css/index.php?lvl=notice_display&id=488
in Autism > 26-8 (November 2022) . - p.1999-2014[article] Parent peer coaching program: A cascading intervention for parents of children with autism in Mongolia [Texte imprimé et/ou numérique] / James D. LEE, Auteur ; Hedda MEADAN, Auteur ; Enkhjin OYUNBAATAR, Auteur . - p.1999-2014.
Langues : Anglais (eng)
in Autism > 26-8 (November 2022) . - p.1999-2014
Mots-clés : Child Humans Autistic Disorder/therapy Mentoring Mongolia Autism Spectrum Disorder/therapy Parents/education capacity building low-resource setting parent peer coaching Index. décimale : PER Périodiques Résumé : Parents of children with autism are known to experience severe hardships related to raising their children. These hardships are exacerbated in low-resource settings internationally where there is very little resource for children and their families, including professionals who provide evidence-based treatment. Mongolia was chosen as an example of such low-resource settings in this single-case research, and four parent mentors and five parent peers and their children with autism participated and completed the study. A local parent group, the Autism Association of Mongolia, was actively involved in this study and helped with recruitment, development, adaptation, and implementation of the intervention to increase acceptability and feasibility. In addition, a local bilingual research assistant was also utilized as the purpose of this study was to build capacity of diverse stakeholders of children with autism in Mongolia. The research assistant was trained and coached by the research team on both content (communication teaching strategies and behavior management) and delivery (coaching adults), who then provided coaching to parent mentors via live videoconferencing in Mongolian. Parent mentors then similarly provided coaching to parent peers after observing the interactions with their children with autism. The findings suggest that parents can effectively deliver high-fidelity coaching to disseminate evidence-based treatment in low-resource settings when given proper training and coaching. Further examination on scalability and sustainment of effects is suggested. En ligne : http://dx.doi.org/10.1177/13623613211070636 Permalink : https://www.cra-rhone-alpes.org/cid/opac_css/index.php?lvl=notice_display&id=488