Rôle des pédiatres dans les soins de santé des enfants autistes latino-américains : prise de décision partagée contre « Vous devez tout faire par vous-même »

Titre original en anglais : Pediatricians’ role in healthcare for Latino autistic children: Shared decision-making versus “You’ve got to do everything on your own”

Cette publication est incluse dans le projet « Contributions académiques de personnes autistes sur l’autisme ». un auteur·ice de cette publication est identifié·e comme autiste dans le projet.

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Angell, A. M., Lindly, O. J., Floríndez, D., Floríndez, L., Duker, L., Zuckerman, K. E., Yin, L., & Solomon, O. (2023). Pediatricians’ role in healthcare for Latino autistic children: Shared decision-making versus “You’ve got to do everything on your own”. Autism, 27(8), 2407-2421. https://doi.org/10.1177/13623613231163056

Date de publication: 17/04/2023 Ajout dans AutiHub: 18/10/2026 Type: Article Langue de l’article: Anglais
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Auteurs

Auteur·ices des publications
8
Auteur·ices de la publication identifié·es comme autistes
1 / 8 (12,5 %)
  1. Amber M. Angell
  2. Olivia J Lindly
  3. Daniella Floríndez *
  4. Lucía Floríndez
  1. Leah Duker
  2. Katharine E Zuckerman
  3. Larry Yin
  4. Olga Solomon

Résumé

Malgré les disparités documentées en matière de soins de santé chez les enfants autistes latino-américains, on sait peu de choses sur la manière dont leurs familles vivent l'« odyssée diagnostique » de l'autisme. Les pédiatres jouent un rôle essentiel dans l'« odyssée diagnostique », mais lorsque celle-ci devient ardue, les parents peuvent également recourir à des approches de santé complémentaires, en particulier lorsque les soins conventionnels ne répondent pas adéquatement à leurs préoccupations. La prise de décision partagée est importante dans les soins de santé des enfants autistes, en particulier lorsque les parents choisissent également des approches de santé complémentaires ; toutefois, on sait peu de choses sur la prise de décision partagée chez les parents latino-américains d'enfants autistes. Nous avons mené une ethnographie de 12 mois auprès de 12 familles latino-américaines biculturelles/bilingues ayant des enfants autistes afin de comprendre leurs expériences en matière de soins de santé pour leurs enfants (soins conventionnels et approches de santé complémentaires), en mettant l'accent sur la prise de décision partagée. L'analyse thématique a révélé : (1) que la plupart des pédiatres étaient impliqués au début de l'« odyssée diagnostique », mais ne l'étaient ensuite que très peu ; (2) que les soins de santé conventionnels étaient satisfaisants pour les parents en ce qui concerne la santé physique, mais pas les questions développementales ; et (3) que les parents ayant recours à des approches de santé complémentaires étaient davantage frustrés par le manque d'informations sur l'autisme fournies par les pédiatres que ceux qui n'y recouraient pas. Enfin, (4) nous décrivons deux exemples de prise de décision partagée réussie entre des parents latino-américains et des pédiatres. L'amélioration des connaissances des pédiatres sur l'autisme et de leur capacité à discuter des approches de santé complémentaires pourrait faciliter la prise de décision partagée et réduire les disparités en matière de soins de santé chez les enfants autistes latino-américains. Résumé grand public Les parents latino-américains peuvent choisir d'utiliser des approches de santé complémentaires, telles que des vitamines, des suppléments et des régimes spéciaux, pour leurs enfants autistes. Toutefois, ils pourraient ne pas informer leur pédiatre de leur recours à des approches de santé complémentaires s'ils craignent que le pédiatre désapprouve ce choix ou les juge. Cette crainte, associée au manque de connaissances des pédiatres sur l'autisme, crée des obstacles à la « prise de décision partagée » entre les parents et les pédiatres. La prise de décision partagée est un processus au cours duquel les familles et les prestataires de soins de santé collaborent et échangent des informations afin de parvenir à un accord sur les options de traitement. Dans notre étude qualitative menée auprès de 12 familles latino-américaines bilingues ayant des enfants autistes, nous avons interrogé et observé les familles afin de connaître leurs expériences avec les soins de santé conventionnels (leur pédiatre) et les approches de santé complémentaires. Les résultats de notre étude décrivent les différents parcours des parents vers une évaluation de l'autisme, un processus parfois appelé l'« odyssée diagnostique ». Les parents ont indiqué que les soins de santé conventionnels répondaient à leurs besoins concernant la santé physique de leur enfant, mais non aux difficultés développementales de celui-ci. Les parents qui utilisaient des approches de santé complémentaires pour leurs enfants autistes étaient davantage frustrés par le manque d'informations sur l'autisme fournies par les pédiatres que ceux qui n'utilisaient pas d'approches de santé complémentaires. Enfin, nous décrivons deux exemples de prise de décision partagée réussie entre les parents et les pédiatres. Nous concluons que les pédiatres capables de discuter des approches de santé complémentaires avec les familles latino-américaines pourraient contribuer à faciliter la prise de décision partagée et à réduire les disparités en matière de soins de santé chez les enfants autistes latino-américains.

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 Abstract Latino 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.

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Références citées
70
Avec un DOI
62
Sans DOI, à partir du texte brut de la bibliographie
8
0 / 70 (0,0 %) références citées comprennent au moins une personne identifiée comme autiste.
Références avec données à compléter
6 / 70 (8,6 %)
Références avec noms d’auteurices détectés
64 / 70 (91,4 %)
Sans nom d’auteurice détecté
6
Sans titre structuré
5
Sans identifiant stable
7
Références avec noms bruts d’auteurices restant à vérifier
5
Références avec problème de récupération des métadonnées externes
0
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Noms d’auteurices détectés dans la bibliographie citée
322
À partir du DOI ou de métadonnées externes
322
À partir du texte brut validé de la bibliographie
0
Noms bruts déjà validés
0
Noms bruts restant à vérifier
6
56 / 322 (17,4 %) noms sont associés à un·e auteurice déjà présent·e dans AutiHub. 266 / 322 (82,6 %) noms ne sont pas encore associés.
Noms associés à une personne identifiée comme autiste
0 / 322 (0,0 %)
Calculé sur l’ensemble des noms d’auteurices détectés dans la bibliographie citée. Parmi les noms associés à un·e auteurice déjà présent·e dans AutiHub : 0 / 56 (0,0 %). Personnes distinctes identifiées comme autistes : 0 / 252 (0,0 %).
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