Black and White caregivers' experiences with the autism diagnostic process / James D. Lynch ; Kayva KANDARPA ; Suma KOLLA ; Maggie MICHAEL ; Waleia LARKIN ; Lisa L. HUNTER in Research in Autism, 124 (June 2025)  

Public ISBD [article]  inResearch in Autism > 124 (June 2025) . - 202598 Titre : Black and White caregivers' experiences with the autism diagnostic process Type de document : Texte imprimé et/ou numérique Auteurs : James D. Lynch, Auteur ; Kayva KANDARPA, Auteur ; Suma KOLLA, Auteur ; Maggie MICHAEL, Auteur ; Waleia LARKIN, Auteur ; Lisa L. HUNTER, Auteur Article en page(s) : 202598 Langues : Anglais (eng) Mots-clés : Autism spectrum disorders  Qualitative research  Patient satisfaction  Cultural competency  Parents  Racial groups  Diagnosis Index. décimale : PER Périodiques Résumé : Introduction Families commonly report dissatisfaction with the autism diagnostic process, including long waits and lack of follow-up care. Dissatisfaction may be amplified for Black families, who experience racism in the healthcare system and have less access to culturally responsive care. Methods We assessed open text box responses to a survey about caregivers' satisfaction with the diagnostic process of autism spectrum disorder. We recruited Black and White caregivers of children with autism who participated in a developmental evaluation in 2018 at a large midwestern hospital. Out of 174 who completed the satisfaction survey, 71 (46.6 %) caregivers gave one or more qualitative responses in open text boxes (17 [34.0 %] Black families, 54 [43.5 %] White families). Researchers analyzed themes using inductive methods for Black and White families. Results Families who expanded on their Likert responses in open text boxes were less satisfied with the diagnostic process than those who did not. Caregivers described mixed feedback about wait times, their providers, and the information they received. Black families specifically described a power differential between providers and themselves. Discussion Though not representative of all families' experiences, caregivers' qualitative feedback sheds light on important changes that could be implemented to improve families' experiences with the diagnostic process. We highlight several recommendations including family navigation, training in culturally responsive care, and shared decision making. En ligne : https://doi.org/10.1016/j.reia.2025.202598 Permalink : https://www.cra-rhone-alpes.org/cid/opac_css/index.php?lvl=notice_display&id=556 [article] Black and White caregivers' experiences with the autism diagnostic process [Texte imprimé et/ou numérique] / James D. Lynch, Auteur ; Kayva KANDARPA, Auteur ; Suma KOLLA, Auteur ; Maggie MICHAEL, Auteur ; Waleia LARKIN, Auteur ; Lisa L. HUNTER, Auteur . - 202598. Langues : Anglais (eng) in Research in Autism > 124 (June 2025) . - 202598 Mots-clés : Autism spectrum disorders  Qualitative research  Patient satisfaction  Cultural competency  Parents  Racial groups  Diagnosis Index. décimale : PER Périodiques Résumé : Introduction Families commonly report dissatisfaction with the autism diagnostic process, including long waits and lack of follow-up care. Dissatisfaction may be amplified for Black families, who experience racism in the healthcare system and have less access to culturally responsive care. Methods We assessed open text box responses to a survey about caregivers' satisfaction with the diagnostic process of autism spectrum disorder. We recruited Black and White caregivers of children with autism who participated in a developmental evaluation in 2018 at a large midwestern hospital. Out of 174 who completed the satisfaction survey, 71 (46.6 %) caregivers gave one or more qualitative responses in open text boxes (17 [34.0 %] Black families, 54 [43.5 %] White families). Researchers analyzed themes using inductive methods for Black and White families. Results Families who expanded on their Likert responses in open text boxes were less satisfied with the diagnostic process than those who did not. Caregivers described mixed feedback about wait times, their providers, and the information they received. Black families specifically described a power differential between providers and themselves. Discussion Though not representative of all families' experiences, caregivers' qualitative feedback sheds light on important changes that could be implemented to improve families' experiences with the diagnostic process. We highlight several recommendations including family navigation, training in culturally responsive care, and shared decision making. En ligne : https://doi.org/10.1016/j.reia.2025.202598 Permalink : https://www.cra-rhone-alpes.org/cid/opac_css/index.php?lvl=notice_display&id=556

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