Centre d'Information et de documentation du CRA Rhône-Alpes
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Challenges, priorities, barriers to care, and stigma in families of people with autism: Similarities and differences among six Latin American countries / Cristiane Silvestre PAULA in Autism, 24-8 (November 2020)
[article]
Titre : Challenges, priorities, barriers to care, and stigma in families of people with autism: Similarities and differences among six Latin American countries Type de document : Texte imprimé et/ou numérique Auteurs : Cristiane Silvestre PAULA, Auteur ; Sebastián CUKIER, Auteur ; Graccielle Rodrigues CUNHA, Auteur ; Matías IRARRÁZAVAL, Auteur ; Cecilia MONTIEL-NAVA, Auteur ; Ricardo GARCIA, Auteur ; Analia ROSOLI, Auteur ; Daniel VALDEZ, Auteur ; Daniela BORDINI, Auteur ; Andy SHIH, Auteur ; Gabriela GARRIDO, Auteur ; Alexia RATTAZZI, Auteur Article en page(s) : p.2228-2242 Langues : Anglais (eng) Mots-clés : *autism *economic costs *healthcare utilization *stigma *treatment barriers Index. décimale : PER Périodiques Résumé : Approximately 6 million individuals with autism spectrum disorder live in Latin America. In order to strengthen autism spectrum disorder research collaborations and awareness in the region, the Latin American Autism Spectrum Network (Red Espectro Autista Latinoamerica) was constituted in 2015, comprising researchers and clinicians from the following six countries: Brazil Argentina, Chile, Uruguay, Venezuela, and the Dominican Republic. This first multisite study from the Red Espectro Autista Latinoamerica network aims to describe the challenges and priorities to identify barriers to care and to map stigma among families of individuals with autism spectrum disorder living in Latin America. A total of 2942 caregivers from these six countries completed an online survey showing that the main priorities were greater community awareness and improvements in the educational system for individuals with autism spectrum disorder. In addition to that, the main barriers to care were related to lack of structure, mainly waiting lists (50.2%), high treatment costs (35.2%), and lack of specialized services (26.1%). Stigma experienced by families was frequent: one third reported feeling discriminated against and helpless for having a child with autism spectrum disorder. Also, 48.8% of the caregivers declared financial problems, 47.4% of them had to cut down work hours, and 35.5% had to leave their jobs because of their child's autism spectrum disorder. This is a pioneer study providing a description of the needs and challenges faced by families affected by autism spectrum disorder in Latin America, helping to build data-driven strategies at the national and regional levels. En ligne : http://dx.doi.org/10.1177/1362361320940073 Permalink : https://www.cra-rhone-alpes.org/cid/opac_css/index.php?lvl=notice_display&id=431
in Autism > 24-8 (November 2020) . - p.2228-2242[article] Challenges, priorities, barriers to care, and stigma in families of people with autism: Similarities and differences among six Latin American countries [Texte imprimé et/ou numérique] / Cristiane Silvestre PAULA, Auteur ; Sebastián CUKIER, Auteur ; Graccielle Rodrigues CUNHA, Auteur ; Matías IRARRÁZAVAL, Auteur ; Cecilia MONTIEL-NAVA, Auteur ; Ricardo GARCIA, Auteur ; Analia ROSOLI, Auteur ; Daniel VALDEZ, Auteur ; Daniela BORDINI, Auteur ; Andy SHIH, Auteur ; Gabriela GARRIDO, Auteur ; Alexia RATTAZZI, Auteur . - p.2228-2242.
Langues : Anglais (eng)
in Autism > 24-8 (November 2020) . - p.2228-2242
Mots-clés : *autism *economic costs *healthcare utilization *stigma *treatment barriers Index. décimale : PER Périodiques Résumé : Approximately 6 million individuals with autism spectrum disorder live in Latin America. In order to strengthen autism spectrum disorder research collaborations and awareness in the region, the Latin American Autism Spectrum Network (Red Espectro Autista Latinoamerica) was constituted in 2015, comprising researchers and clinicians from the following six countries: Brazil Argentina, Chile, Uruguay, Venezuela, and the Dominican Republic. This first multisite study from the Red Espectro Autista Latinoamerica network aims to describe the challenges and priorities to identify barriers to care and to map stigma among families of individuals with autism spectrum disorder living in Latin America. A total of 2942 caregivers from these six countries completed an online survey showing that the main priorities were greater community awareness and improvements in the educational system for individuals with autism spectrum disorder. In addition to that, the main barriers to care were related to lack of structure, mainly waiting lists (50.2%), high treatment costs (35.2%), and lack of specialized services (26.1%). Stigma experienced by families was frequent: one third reported feeling discriminated against and helpless for having a child with autism spectrum disorder. Also, 48.8% of the caregivers declared financial problems, 47.4% of them had to cut down work hours, and 35.5% had to leave their jobs because of their child's autism spectrum disorder. This is a pioneer study providing a description of the needs and challenges faced by families affected by autism spectrum disorder in Latin America, helping to build data-driven strategies at the national and regional levels. En ligne : http://dx.doi.org/10.1177/1362361320940073 Permalink : https://www.cra-rhone-alpes.org/cid/opac_css/index.php?lvl=notice_display&id=431 Stigma associated with parental depression or cancer: Impact on spouse and offspring's cortisol levels and socioemotional functioning / Sonia J. LUPIEN in Development and Psychopathology, 32-5 (December 2020)
[article]
Titre : Stigma associated with parental depression or cancer: Impact on spouse and offspring's cortisol levels and socioemotional functioning Type de document : Texte imprimé et/ou numérique Auteurs : Sonia J. LUPIEN, Auteur ; Denis-Claude ROY, Auteur ; Catherine RAYMOND, Auteur ; Sarah LECLAIRE, Auteur ; Nathalie WAN, Auteur ; Réal LABELLE, Auteur ; Charles-Édouard GIGUERE, Auteur ; Isabelle OUELLET-MORIN, Auteur Article en page(s) : p.1822-1837 Langues : Anglais (eng) Mots-clés : Bayes Theorem Caregivers Child Depression *Depressive Disorder, Major Humans Hydrocortisone *Neoplasms Parents Spouses Stress, Psychological *cancer *caregiver *cortisol *depression *offspring *stigma *stress Index. décimale : PER Périodiques Résumé : Stress associated with caring for a mentally ill spouse can adversely affect the health status of caregivers and their children. Adding to the stress of caregiving is the stigma often placed against spouses and children of people with mental illness. Contrary to mental illness, many physical disorders such as cancer may be less stigmatized (expect pulmonary cancer). In this study, we measured externalized and internalized stigma, as well as psychological (depressive symptoms and stressful life events) and physiological (basal salivary cortisol levels) markers of stress in 115 spouses and 154 children of parents suffering from major depressive disorder, cancer, or no illness (control group). The results show that spouses and children from families with parental depression present significantly more externalized stigma than spouses and children from families with parental cancer or no illness, although we find no group differences on internalized stigma. The analysis did not show a significant group difference either for spouses or their children on depressive symptomatology, although spouses from the parental depression group reported greater work/family stress. Finally, we found that although for both spouses children the awakening cortisol response was greater on weekdays than on weekend days, salivary cortisol levels did not differ between groups. Bayes factor calculated on the null result for cortisol levels was greater than 100, providing strong evidence for the null hypothesis H0. Altogether, these results suggest an impact of stigma toward mental health disorder on psychological markers of stress but no impact of stigma on physiological markers of stress. We suggest that these results may be due to the characteristics of the families who participated in the present study. En ligne : http://dx.doi.org/10.1017/s0954579420001431 Permalink : https://www.cra-rhone-alpes.org/cid/opac_css/index.php?lvl=notice_display&id=437
in Development and Psychopathology > 32-5 (December 2020) . - p.1822-1837[article] Stigma associated with parental depression or cancer: Impact on spouse and offspring's cortisol levels and socioemotional functioning [Texte imprimé et/ou numérique] / Sonia J. LUPIEN, Auteur ; Denis-Claude ROY, Auteur ; Catherine RAYMOND, Auteur ; Sarah LECLAIRE, Auteur ; Nathalie WAN, Auteur ; Réal LABELLE, Auteur ; Charles-Édouard GIGUERE, Auteur ; Isabelle OUELLET-MORIN, Auteur . - p.1822-1837.
Langues : Anglais (eng)
in Development and Psychopathology > 32-5 (December 2020) . - p.1822-1837
Mots-clés : Bayes Theorem Caregivers Child Depression *Depressive Disorder, Major Humans Hydrocortisone *Neoplasms Parents Spouses Stress, Psychological *cancer *caregiver *cortisol *depression *offspring *stigma *stress Index. décimale : PER Périodiques Résumé : Stress associated with caring for a mentally ill spouse can adversely affect the health status of caregivers and their children. Adding to the stress of caregiving is the stigma often placed against spouses and children of people with mental illness. Contrary to mental illness, many physical disorders such as cancer may be less stigmatized (expect pulmonary cancer). In this study, we measured externalized and internalized stigma, as well as psychological (depressive symptoms and stressful life events) and physiological (basal salivary cortisol levels) markers of stress in 115 spouses and 154 children of parents suffering from major depressive disorder, cancer, or no illness (control group). The results show that spouses and children from families with parental depression present significantly more externalized stigma than spouses and children from families with parental cancer or no illness, although we find no group differences on internalized stigma. The analysis did not show a significant group difference either for spouses or their children on depressive symptomatology, although spouses from the parental depression group reported greater work/family stress. Finally, we found that although for both spouses children the awakening cortisol response was greater on weekdays than on weekend days, salivary cortisol levels did not differ between groups. Bayes factor calculated on the null result for cortisol levels was greater than 100, providing strong evidence for the null hypothesis H0. Altogether, these results suggest an impact of stigma toward mental health disorder on psychological markers of stress but no impact of stigma on physiological markers of stress. We suggest that these results may be due to the characteristics of the families who participated in the present study. En ligne : http://dx.doi.org/10.1017/s0954579420001431 Permalink : https://www.cra-rhone-alpes.org/cid/opac_css/index.php?lvl=notice_display&id=437