Mobile and online consumer tools to screen for autism do not promote equity / Benjamin W SANDERS in Autism, 27-3 (April 2023)  

Public ISBD [article]  inAutism > 27-3 (April 2023) . - p.714-722 Titre : Mobile and online consumer tools to screen for autism do not promote equity Type de document : Texte imprimé et/ou numérique Auteurs : Benjamin W SANDERS, Auteur ; Steven BEDRICK, Auteur ; Sarabeth BRODER-FINGERT, Auteur ; Shannon A BROWN, Auteur ; Jill K DOLATA, Auteur ; Eric FOMBONNE, Auteur ; Julie A REEDER, Auteur ; Luis Andres RIVAS VAZQUEZ, Auteur ; Plyce FUCHU, Auteur ; Yesenia MORALES, Auteur ; Katharine E ZUCKERMAN, Auteur Article en page(s) : p.714-722 Langues : Anglais (eng) Mots-clés : autism spectrum disorder,digital divide,mass screening,mobile applications,parents,preschool,child Index. décimale : PER Périodiques Résumé : Limited access to screening and evaluation for autism spectrum disorder in children is a major barrier to improving outcomes for marginalized families. To identify and evaluate available digital autism spectrum disorder screening resources, we simulated web and mobile app searches by a parent concerned about their child?s likelihood of autism spectrum disorder. Included digital autism spectrum disorder screening tools (a) were on Internet or mobile app; (b) were in English; (c) had a parent user inputting data; (d) assigned likelihood category to child <9?years; and (e) screened for autism spectrum disorder. Ten search terms, developed using Google Search and parent panel recommendations, were used to search web and app tools in the United States, the United Kingdom, India, Australia, and Canada using Virtual Private Networks. Results were examined for attributes likely to benefit parents in marginalized communities, such as ease of searching, language versions, and reading level. The four terms most likely to identify any tools were ''autism quiz,'' ''autism screening tool,'' ''does my child have autism,'' and ''autism toddler.'' Three out of five searches contained autism spectrum disorder screening tools, as did one of 10 links or apps. Searches identified a total of 1475 websites and 919 apps, which yielded 23 unique tools. Most tools required continuous Internet access or offered only English, and many had high reading levels. In conclusion, screening tools are available, but they are not easily found. Barriers include inaccessibility to parents with limited literacy or limited English proficiency, and frequent encounters with games, advertisements, and user fees.Lay AbstractMany parents wonder if their child might have autism. Many parents use their smartphones to answer health questions. We asked, ''How easy or hard is it for parents to use their smartphones to find 'tools' to test their child for signs of autism?'' After doing pretend parent searches, we found that only one in 10 search results were tools to test children for autism. These tools were not designed for parents who have low income or other challenges such as low literacy skills, low English proficiency, or not being tech-savvy. En ligne : https://doi.org/10.1177/13623613221114280 Permalink : https://www.cra-rhone-alpes.org/cid/opac_css/index.php?lvl=notice_display&id=499 [article] Mobile and online consumer tools to screen for autism do not promote equity [Texte imprimé et/ou numérique] / Benjamin W SANDERS, Auteur ; Steven BEDRICK, Auteur ; Sarabeth BRODER-FINGERT, Auteur ; Shannon A BROWN, Auteur ; Jill K DOLATA, Auteur ; Eric FOMBONNE, Auteur ; Julie A REEDER, Auteur ; Luis Andres RIVAS VAZQUEZ, Auteur ; Plyce FUCHU, Auteur ; Yesenia MORALES, Auteur ; Katharine E ZUCKERMAN, Auteur . - p.714-722. Langues : Anglais (eng) in Autism > 27-3 (April 2023) . - p.714-722 Mots-clés : autism spectrum disorder,digital divide,mass screening,mobile applications,parents,preschool,child Index. décimale : PER Périodiques Résumé : Limited access to screening and evaluation for autism spectrum disorder in children is a major barrier to improving outcomes for marginalized families. To identify and evaluate available digital autism spectrum disorder screening resources, we simulated web and mobile app searches by a parent concerned about their child?s likelihood of autism spectrum disorder. Included digital autism spectrum disorder screening tools (a) were on Internet or mobile app; (b) were in English; (c) had a parent user inputting data; (d) assigned likelihood category to child <9?years; and (e) screened for autism spectrum disorder. Ten search terms, developed using Google Search and parent panel recommendations, were used to search web and app tools in the United States, the United Kingdom, India, Australia, and Canada using Virtual Private Networks. Results were examined for attributes likely to benefit parents in marginalized communities, such as ease of searching, language versions, and reading level. The four terms most likely to identify any tools were ''autism quiz,'' ''autism screening tool,'' ''does my child have autism,'' and ''autism toddler.'' Three out of five searches contained autism spectrum disorder screening tools, as did one of 10 links or apps. Searches identified a total of 1475 websites and 919 apps, which yielded 23 unique tools. Most tools required continuous Internet access or offered only English, and many had high reading levels. In conclusion, screening tools are available, but they are not easily found. Barriers include inaccessibility to parents with limited literacy or limited English proficiency, and frequent encounters with games, advertisements, and user fees.Lay AbstractMany parents wonder if their child might have autism. Many parents use their smartphones to answer health questions. We asked, ''How easy or hard is it for parents to use their smartphones to find 'tools' to test their child for signs of autism?'' After doing pretend parent searches, we found that only one in 10 search results were tools to test children for autism. These tools were not designed for parents who have low income or other challenges such as low literacy skills, low English proficiency, or not being tech-savvy. En ligne : https://doi.org/10.1177/13623613221114280 Permalink : https://www.cra-rhone-alpes.org/cid/opac_css/index.php?lvl=notice_display&id=499

Pediatricians' role in healthcare for Latino autistic children: Shared decision-making versus "You?ve got to do everything on your own" / Amber M ANGELL in Autism, 27-8 (November 2023)  

Public ISBD [article]  inAutism > 27-8 (November 2023) . - p.2407-2421 Titre : Pediatricians' role in healthcare for Latino autistic children: Shared decision-making versus "You?ve got to do everything on your own" Type de document : Texte imprimé et/ou numérique Auteurs : Amber M ANGELL, Auteur ; Olivia J LINDLY, Auteur ; Daniella FLORÍNDEZ, Auteur ; Lucía I FLORÍNDEZ, Auteur ; Leah I STEIN DUKER, Auteur ; Katharine E ZUCKERMAN, Auteur ; Larry YIN, Auteur ; Olga SOLOMON, Auteur Article en page(s) : p.2407-2421 Mots-clés : Autism spectrum disorders  family functioning and support  health services  qualitative research Index. décimale : PER Périodiques Résumé : Despite documented healthcare disparities among Latino autistic children, little is known about how their families experience the autism "diagnostic odyssey." Pediatricians have a critical role in the "diagnostic odyssey," but when it becomes arduous, parents may also use complementary health approaches, particularly when conventional care does not adequately address their concerns. Shared decision-making is important in healthcare for autistic children, especially when parents also choose complementary health approaches; but little is known about shared decision-making among Latino parents of autistic children. We conducted a 12-month ethnography with 12 bicultural/bilingual Latino families of autistic children to understand their healthcare experiences (conventional and complementary health approaches) for their children, focusing on shared decision-making. Thematic analysis revealed: (1) most pediatricians were involved early in the "diagnostic odyssey" but were largely uninvolved thereafter; (2) conventional healthcare was satisfactory to the parents for physical health, but not developmental issues; and (3) parents who used complementary health approaches were more frustrated about a lack of autism information from pediatricians than those who did not. Finally, (4) we describe two exemplars of successful shared decision-making between Latino parents and pediatricians. Increasing pediatricians' autism knowledge and ability to discuss complementary health approaches may facilitate shared decision-making and reduce healthcare disparities for Latino autistic children.Lay AbstractLatino parents may choose to use complementary health approaches, such as vitamins, supplements, and special diets, for their autistic children. However, they might not tell their pediatrician about their complementary health approach use if they worry that the pediatrician will disapprove or judge them. This fear, along with pediatricians' lack of autism knowledge, creates barriers to "shared decision-making" between parents and pediatricians. Shared decision-making is a process where families and healthcare providers collaborate and exchange information in order to come to an agreement about treatment options. In our qualitative study with 12 bilingual Latino families of autistic children, we interviewed and observed families to learn about their experiences with both conventional healthcare (their pediatrician) and complementary health approaches. Our study results describe the parents' different pathways to an autism assessment, a process that is sometimes called the "diagnostic odyssey." The parents reported that conventional healthcare met their needs for their child?s physical health but not for their child?s developmental challenges. The parents who used complementary health approaches for their autistic children were more frustrated about a lack of autism information from pediatricians than those who did not use complementary health approaches. Finally, we describe two examples of successful shared decision-making between parents and pediatricians. We conclude that pediatricians who are able to talk about complementary health approaches with Latino families may help to facilitate shared decision-making and reduce healthcare disparities for Latino autistic children. En ligne : http://dx.doi.org/10.1177/13623613231163056 Permalink : https://www.cra-rhone-alpes.org/cid/opac_css/index.php?lvl=notice_display&id=513 [article] Pediatricians' role in healthcare for Latino autistic children: Shared decision-making versus "You?ve got to do everything on your own" [Texte imprimé et/ou numérique] / Amber M ANGELL, Auteur ; Olivia J LINDLY, Auteur ; Daniella FLORÍNDEZ, Auteur ; Lucía I FLORÍNDEZ, Auteur ; Leah I STEIN DUKER, Auteur ; Katharine E ZUCKERMAN, Auteur ; Larry YIN, Auteur ; Olga SOLOMON, Auteur . - p.2407-2421. in Autism > 27-8 (November 2023) . - p.2407-2421 Mots-clés : Autism spectrum disorders  family functioning and support  health services  qualitative research Index. décimale : PER Périodiques Résumé : Despite documented healthcare disparities among Latino autistic children, little is known about how their families experience the autism "diagnostic odyssey." Pediatricians have a critical role in the "diagnostic odyssey," but when it becomes arduous, parents may also use complementary health approaches, particularly when conventional care does not adequately address their concerns. Shared decision-making is important in healthcare for autistic children, especially when parents also choose complementary health approaches; but little is known about shared decision-making among Latino parents of autistic children. We conducted a 12-month ethnography with 12 bicultural/bilingual Latino families of autistic children to understand their healthcare experiences (conventional and complementary health approaches) for their children, focusing on shared decision-making. Thematic analysis revealed: (1) most pediatricians were involved early in the "diagnostic odyssey" but were largely uninvolved thereafter; (2) conventional healthcare was satisfactory to the parents for physical health, but not developmental issues; and (3) parents who used complementary health approaches were more frustrated about a lack of autism information from pediatricians than those who did not. Finally, (4) we describe two exemplars of successful shared decision-making between Latino parents and pediatricians. Increasing pediatricians' autism knowledge and ability to discuss complementary health approaches may facilitate shared decision-making and reduce healthcare disparities for Latino autistic children.Lay AbstractLatino parents may choose to use complementary health approaches, such as vitamins, supplements, and special diets, for their autistic children. However, they might not tell their pediatrician about their complementary health approach use if they worry that the pediatrician will disapprove or judge them. This fear, along with pediatricians' lack of autism knowledge, creates barriers to "shared decision-making" between parents and pediatricians. Shared decision-making is a process where families and healthcare providers collaborate and exchange information in order to come to an agreement about treatment options. In our qualitative study with 12 bilingual Latino families of autistic children, we interviewed and observed families to learn about their experiences with both conventional healthcare (their pediatrician) and complementary health approaches. Our study results describe the parents' different pathways to an autism assessment, a process that is sometimes called the "diagnostic odyssey." The parents reported that conventional healthcare met their needs for their child?s physical health but not for their child?s developmental challenges. The parents who used complementary health approaches for their autistic children were more frustrated about a lack of autism information from pediatricians than those who did not use complementary health approaches. Finally, we describe two examples of successful shared decision-making between parents and pediatricians. We conclude that pediatricians who are able to talk about complementary health approaches with Latino families may help to facilitate shared decision-making and reduce healthcare disparities for Latino autistic children. En ligne : http://dx.doi.org/10.1177/13623613231163056 Permalink : https://www.cra-rhone-alpes.org/cid/opac_css/index.php?lvl=notice_display&id=513

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