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

The impact of state policy on early autism diagnosis: A qualitative investigation / Olivia J LINDLY in Autism, 29-8 (August 2025)  

Public ISBD [article]  inAutism > 29-8 (August 2025) . - p.2163-2180 Titre : The impact of state policy on early autism diagnosis: A qualitative investigation Type de document : Texte imprimé et/ou numérique Auteurs : Olivia J LINDLY, Auteur ; Danielle ABATE, Auteur ; Plyce L FUCHU, Auteur ; Jocelyn L KUHN, Auteur ; Purnima S MUDNAL BHARATH, Auteur ; Sarah M ASANTEWAA, Auteur ; Emily FEINBERG, Auteur ; Sarabeth BRODER-FINGERT, Auteur Article en page(s) : p.2163-2180 Langues : Anglais (eng) Mots-clés : autism  disparities  early diagnosis  insurance  policy  services  United States Index. décimale : PER Périodiques Résumé : Autism diagnosis before age three to expedite access to critical services is a public health priority in the United States. Still, the average age of autism diagnosis is 49?months with substantial variability across states. By examining policy-defined as laws, regulations, procedures, administrative actions, incentives, or voluntary practices of governments or other institutions-modifiable structural drivers of early (or late) autism diagnosis may be identified. We, therefore, sought to identify policies impacting early autism diagnosis in five states that are part of a larger initiative to improve autism diagnosis (Arizona, California, Connecticut, Massachusetts, and Pennsylvania) and those that exist nationally. We conducted semi-structured interviews from 2021 to 2023 with a purposive sample of 57 autism policy or research experts. The following four themes were identified through conventional content analysis: (1) developmental monitoring is critical; however, developmental screening policies vary within and across states; (2) myriad policy and contextual factors shape early diagnosis pathways within states; (3) early intervention by the state and community-based early childhood programs influence early autism diagnosis; and (4) persistent disparities in early autism diagnosis pathways are affected by policies. Study findings highlight the importance of advancing certain state and federal policies to increase early autism diagnosis.Lay abstract In the United States, when children on the spectrum are diagnosed before age three, it can help them get the services they need to thrive. There are many differences between states as far as how many children are diagnosed with autism and the average age when they are diagnosed. Some work suggests these differences may be due to state polices, which include the laws and processes governments and organizations follow. Little research has tried to understand the similarities and differences between state policies related to autism diagnosis. Because of this, our study looked at how state policies impact the timing of autism diagnosis in the United States. We interviewed 57 experts in five states and nationally from 2021 to 2023. Four key themes were identified including (1) developmental monitoring often leads to screening, but there is much variation in and across states; (2) family, community, and healthcare factors shape pathways to autism diagnosis in states; (3) early intervention and education programs play a role in autism diagnosis; and (4) systematic differences in access to diagnosis services persist for certain groups of children and families such as those with limited English-speaking abilities. This study?s findings point to certain state and federal policy changes or enhancements to reduce the age of autism diagnosis and ameliorate persistent disparities in autism diagnosis. En ligne : https://journals.sagepub.com/doi/abs/10.1177/13623613251336813 Permalink : https://www.cra-rhone-alpes.org/cid/opac_css/index.php?lvl=notice_display&id=564 [article] The impact of state policy on early autism diagnosis: A qualitative investigation [Texte imprimé et/ou numérique] / Olivia J LINDLY, Auteur ; Danielle ABATE, Auteur ; Plyce L FUCHU, Auteur ; Jocelyn L KUHN, Auteur ; Purnima S MUDNAL BHARATH, Auteur ; Sarah M ASANTEWAA, Auteur ; Emily FEINBERG, Auteur ; Sarabeth BRODER-FINGERT, Auteur . - p.2163-2180. Langues : Anglais (eng) in Autism > 29-8 (August 2025) . - p.2163-2180 Mots-clés : autism  disparities  early diagnosis  insurance  policy  services  United States Index. décimale : PER Périodiques Résumé : Autism diagnosis before age three to expedite access to critical services is a public health priority in the United States. Still, the average age of autism diagnosis is 49?months with substantial variability across states. By examining policy-defined as laws, regulations, procedures, administrative actions, incentives, or voluntary practices of governments or other institutions-modifiable structural drivers of early (or late) autism diagnosis may be identified. We, therefore, sought to identify policies impacting early autism diagnosis in five states that are part of a larger initiative to improve autism diagnosis (Arizona, California, Connecticut, Massachusetts, and Pennsylvania) and those that exist nationally. We conducted semi-structured interviews from 2021 to 2023 with a purposive sample of 57 autism policy or research experts. The following four themes were identified through conventional content analysis: (1) developmental monitoring is critical; however, developmental screening policies vary within and across states; (2) myriad policy and contextual factors shape early diagnosis pathways within states; (3) early intervention by the state and community-based early childhood programs influence early autism diagnosis; and (4) persistent disparities in early autism diagnosis pathways are affected by policies. Study findings highlight the importance of advancing certain state and federal policies to increase early autism diagnosis.Lay abstract In the United States, when children on the spectrum are diagnosed before age three, it can help them get the services they need to thrive. There are many differences between states as far as how many children are diagnosed with autism and the average age when they are diagnosed. Some work suggests these differences may be due to state polices, which include the laws and processes governments and organizations follow. Little research has tried to understand the similarities and differences between state policies related to autism diagnosis. Because of this, our study looked at how state policies impact the timing of autism diagnosis in the United States. We interviewed 57 experts in five states and nationally from 2021 to 2023. Four key themes were identified including (1) developmental monitoring often leads to screening, but there is much variation in and across states; (2) family, community, and healthcare factors shape pathways to autism diagnosis in states; (3) early intervention and education programs play a role in autism diagnosis; and (4) systematic differences in access to diagnosis services persist for certain groups of children and families such as those with limited English-speaking abilities. This study?s findings point to certain state and federal policy changes or enhancements to reduce the age of autism diagnosis and ameliorate persistent disparities in autism diagnosis. En ligne : https://journals.sagepub.com/doi/abs/10.1177/13623613251336813 Permalink : https://www.cra-rhone-alpes.org/cid/opac_css/index.php?lvl=notice_display&id=564

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