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Assessment of Caregiver Inventory for Rett Syndrome / Jane B. LANE in Journal of Autism and Developmental Disorders, 47-4 (April 2017)
[article]
Titre : Assessment of Caregiver Inventory for Rett Syndrome Type de document : Texte imprimé et/ou numérique Auteurs : Jane B. LANE, Auteur ; Amber R. SALTER, Auteur ; Nancy E. JONES, Auteur ; Gary CUTTER, Auteur ; Joseph HORRIGAN, Auteur ; Steve A. SKINNER, Auteur ; Walter E. KAUFMANN, Auteur ; Daniel G. GLAZE, Auteur ; Jeffrey L. NEUL, Auteur ; Alan K. PERCY, Auteur Article en page(s) : p.1102-1112 Langues : Anglais (eng) Mots-clés : Rett syndrome Caregiver Inventory MECP2 Factor analysis Index. décimale : PER Périodiques Résumé : Rett syndrome (RTT) requires total caregiver attention and leads to potential difficulties throughout life. The Caregiver Burden Inventory, designed for Alzheimer disease, was modified to a RTT Caregiver Inventory Assessment (RTT CIA). Reliability and face, construct, and concurrent validity were assessed in caregivers of individuals with RTT. Chi square or Fisher’s exact test for categorical variables and t tests or Wilcoxon two-sample tests for continuous variables were utilized. Survey completed by 198 caregivers; 70 caregivers completed follow-up assessment. Exploratory factor analysis revealed good agreement for physical burden, emotional burden, and social burden. Internal reliability was high (Cronbach’s alpha 0.898). RTT CIA represents a reliable and valid measure, providing a needed metric of caregiver burden in this disorder. En ligne : http://dx.doi.org/10.1007/s10803-017-3034-3 Permalink : https://www.cra-rhone-alpes.org/cid/opac_css/index.php?lvl=notice_display&id=304
in Journal of Autism and Developmental Disorders > 47-4 (April 2017) . - p.1102-1112[article] Assessment of Caregiver Inventory for Rett Syndrome [Texte imprimé et/ou numérique] / Jane B. LANE, Auteur ; Amber R. SALTER, Auteur ; Nancy E. JONES, Auteur ; Gary CUTTER, Auteur ; Joseph HORRIGAN, Auteur ; Steve A. SKINNER, Auteur ; Walter E. KAUFMANN, Auteur ; Daniel G. GLAZE, Auteur ; Jeffrey L. NEUL, Auteur ; Alan K. PERCY, Auteur . - p.1102-1112.
Langues : Anglais (eng)
in Journal of Autism and Developmental Disorders > 47-4 (April 2017) . - p.1102-1112
Mots-clés : Rett syndrome Caregiver Inventory MECP2 Factor analysis Index. décimale : PER Périodiques Résumé : Rett syndrome (RTT) requires total caregiver attention and leads to potential difficulties throughout life. The Caregiver Burden Inventory, designed for Alzheimer disease, was modified to a RTT Caregiver Inventory Assessment (RTT CIA). Reliability and face, construct, and concurrent validity were assessed in caregivers of individuals with RTT. Chi square or Fisher’s exact test for categorical variables and t tests or Wilcoxon two-sample tests for continuous variables were utilized. Survey completed by 198 caregivers; 70 caregivers completed follow-up assessment. Exploratory factor analysis revealed good agreement for physical burden, emotional burden, and social burden. Internal reliability was high (Cronbach’s alpha 0.898). RTT CIA represents a reliable and valid measure, providing a needed metric of caregiver burden in this disorder. En ligne : http://dx.doi.org/10.1007/s10803-017-3034-3 Permalink : https://www.cra-rhone-alpes.org/cid/opac_css/index.php?lvl=notice_display&id=304 Brief report: Caregiver perceptions of autism practices / Veronica P. FLEURY in Research in Autism Spectrum Disorders, 76 (August 2020)
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Titre : Brief report: Caregiver perceptions of autism practices Type de document : Texte imprimé et/ou numérique Auteurs : Veronica P. FLEURY, Auteur ; Pang CHAXIONG, Auteur Article en page(s) : p.101583 Langues : Anglais (eng) Mots-clés : Autism spectrum disorder Evidence-based practices Unsubstantiated practices Caregiver Survey Index. décimale : PER Périodiques Résumé : Background Unsubstantiated practices continue to be viewed as viable options by caregivers, despite the existence of evidence-based practices. The purpose of this study was to better understand factors that influence caregivers’ acceptance of various practices for their children with autism spectrum disorder (ASD). Methods Primary aims were addressed using survey methodology. Caregivers of children with ASD (N?=?75) read texts describing eight practices for intervening or treating aspects of ASD: four evidence-based practices (EBP) and four unsubstantiated practices. The text presentation was based on a 2?×?2 within-subjects factorial design with practice status (EBP or unsubstantiated) and source credibility (credible or non-credible) as the independent variables. For each text, caregivers reported on their familiarity with the practice and the extent to which they approve of the practice described. Results Caregivers were more familiar with unsubstantiated practices than with EBPs but reported higher approval of EBPs. The main effect of source credibility on caregiver approval ratings was not significant. A significant interaction was observed between practice status and source credibility. Caregivers were more likely to approve of unsubstantiated practices endorsed by credible sources and, similarly, of EBPs endorsed by non-credible sources. Conclusion Understanding how caregivers perceive of ASD practices is the first step in developing trainings aimed at teaching them to be savvy consumers of autism information. These are preliminary findings based on a probabilistic sample. Readers are cautioned about applying these findings to the broader caregiver population. Future research directions are discussed. En ligne : https://doi.org/10.1016/j.rasd.2020.101583 Permalink : https://www.cra-rhone-alpes.org/cid/opac_css/index.php?lvl=notice_display&id=429
in Research in Autism Spectrum Disorders > 76 (August 2020) . - p.101583[article] Brief report: Caregiver perceptions of autism practices [Texte imprimé et/ou numérique] / Veronica P. FLEURY, Auteur ; Pang CHAXIONG, Auteur . - p.101583.
Langues : Anglais (eng)
in Research in Autism Spectrum Disorders > 76 (August 2020) . - p.101583
Mots-clés : Autism spectrum disorder Evidence-based practices Unsubstantiated practices Caregiver Survey Index. décimale : PER Périodiques Résumé : Background Unsubstantiated practices continue to be viewed as viable options by caregivers, despite the existence of evidence-based practices. The purpose of this study was to better understand factors that influence caregivers’ acceptance of various practices for their children with autism spectrum disorder (ASD). Methods Primary aims were addressed using survey methodology. Caregivers of children with ASD (N?=?75) read texts describing eight practices for intervening or treating aspects of ASD: four evidence-based practices (EBP) and four unsubstantiated practices. The text presentation was based on a 2?×?2 within-subjects factorial design with practice status (EBP or unsubstantiated) and source credibility (credible or non-credible) as the independent variables. For each text, caregivers reported on their familiarity with the practice and the extent to which they approve of the practice described. Results Caregivers were more familiar with unsubstantiated practices than with EBPs but reported higher approval of EBPs. The main effect of source credibility on caregiver approval ratings was not significant. A significant interaction was observed between practice status and source credibility. Caregivers were more likely to approve of unsubstantiated practices endorsed by credible sources and, similarly, of EBPs endorsed by non-credible sources. Conclusion Understanding how caregivers perceive of ASD practices is the first step in developing trainings aimed at teaching them to be savvy consumers of autism information. These are preliminary findings based on a probabilistic sample. Readers are cautioned about applying these findings to the broader caregiver population. Future research directions are discussed. En ligne : https://doi.org/10.1016/j.rasd.2020.101583 Permalink : https://www.cra-rhone-alpes.org/cid/opac_css/index.php?lvl=notice_display&id=429 Effects of Caregiver-Focused Programs on Psychosocial Outcomes in Caregivers of Individuals with ASD: A Meta-analysis / Y. YU in Journal of Autism and Developmental Disorders, 49-12 (December 2019)
[article]
Titre : Effects of Caregiver-Focused Programs on Psychosocial Outcomes in Caregivers of Individuals with ASD: A Meta-analysis Type de document : Texte imprimé et/ou numérique Auteurs : Y. YU, Auteur ; J. H. MCGREW, Auteur ; J. BOLOOR, Auteur Article en page(s) : p.4761-4779 Langues : Anglais (eng) Mots-clés : Autism spectrum disorder Caregiver Intervention Meta-analysis Parents Psychosocial outcomes Index. décimale : PER Périodiques Résumé : The current meta-analysis comprehensively reviewed group-design studies of interventions designed to improve ASD caregiver psychosocial outcomes and explored potential moderators of effectiveness. Forty-one unique studies targeting 1771 caregivers met inclusion criteria. Overall, the interventions had a small positive effect in improving psychosocial outcomes in caregivers of individuals with ASD (within-subjects: Hedges' g = .44; between-subjects: Hedges' g = .28). Most intervention approaches demonstrated some evidence of effectiveness. Acceptance and commitment therapy, mindfulness-based interventions, and cognitive behavioral treatments demonstrated the strongest impact in improving caregiver psychosocial outcomes in pre-post comparisons. Although the results provide preliminary support for the effectiveness of caregiver-focused interventions, more studies with larger sample sizes, rigorous research designs, and long-term follow-up assessments are needed. En ligne : http://dx.doi.org/10.1007/s10803-019-04181-z Permalink : https://www.cra-rhone-alpes.org/cid/opac_css/index.php?lvl=notice_display&id=411
in Journal of Autism and Developmental Disorders > 49-12 (December 2019) . - p.4761-4779[article] Effects of Caregiver-Focused Programs on Psychosocial Outcomes in Caregivers of Individuals with ASD: A Meta-analysis [Texte imprimé et/ou numérique] / Y. YU, Auteur ; J. H. MCGREW, Auteur ; J. BOLOOR, Auteur . - p.4761-4779.
Langues : Anglais (eng)
in Journal of Autism and Developmental Disorders > 49-12 (December 2019) . - p.4761-4779
Mots-clés : Autism spectrum disorder Caregiver Intervention Meta-analysis Parents Psychosocial outcomes Index. décimale : PER Périodiques Résumé : The current meta-analysis comprehensively reviewed group-design studies of interventions designed to improve ASD caregiver psychosocial outcomes and explored potential moderators of effectiveness. Forty-one unique studies targeting 1771 caregivers met inclusion criteria. Overall, the interventions had a small positive effect in improving psychosocial outcomes in caregivers of individuals with ASD (within-subjects: Hedges' g = .44; between-subjects: Hedges' g = .28). Most intervention approaches demonstrated some evidence of effectiveness. Acceptance and commitment therapy, mindfulness-based interventions, and cognitive behavioral treatments demonstrated the strongest impact in improving caregiver psychosocial outcomes in pre-post comparisons. Although the results provide preliminary support for the effectiveness of caregiver-focused interventions, more studies with larger sample sizes, rigorous research designs, and long-term follow-up assessments are needed. En ligne : http://dx.doi.org/10.1007/s10803-019-04181-z Permalink : https://www.cra-rhone-alpes.org/cid/opac_css/index.php?lvl=notice_display&id=411 Parent/caregiver perspectives of functioning in autism spectrum disorders: A comparative study in Sweden and South Africa / M. VILJOEN in Autism, 23-8 (November 2019)
[article]
Titre : Parent/caregiver perspectives of functioning in autism spectrum disorders: A comparative study in Sweden and South Africa Type de document : Texte imprimé et/ou numérique Auteurs : M. VILJOEN, Auteur ; S. MAHDI, Auteur ; D. GRIESSEL, Auteur ; Sven BÖLTE, Auteur ; P. J. DE VRIES, Auteur Article en page(s) : p.2112-2130 Langues : Anglais (eng) Mots-clés : Disability and Health Icf International Classification of Functioning autism spectrum disorder caregiver disability functioning parent Index. décimale : PER Périodiques Résumé : Functional outcomes in autism spectrum disorder can be highly variable given the heterogeneous nature of autism spectrum disorder and its interaction with environmental factors. We set out to compare parent/caregiver perceptions of functioning in two divergent countries that participated in the International Classification of Functioning Disability and Health (ICF) Core Set for Autism Spectrum Disorder development study. We focused on the frequency and content of items reported, and hypothesized that environmental factors would most frequently be reported as barriers to functioning in low-resource settings. Using frequency and qualitative content analysis, we compared data from South Africa (n = 22) and Sweden (n = 13). Frequency agreement was seen in three activities and participation categories, and one environmental factor. Obvious frequency differences were observed in one environmental factors category, six body functions categories and three activities and participation categories. Only three ICF categories (immediate family, attention functions, products and technology for personal use) differed in content. Contrary to our hypotheses, few differences in perspectives about environmental factors emerged. The universality of our findings supports the global usefulness of the recently developed ICF Core Sets for Autism Spectrum Disorder. We recommend that more comparative studies on autism spectrum disorder and functioning should be conducted, and that similar comparisons in other disorders where Core Sets have been developed may be valuable. En ligne : http://dx.doi.org/10.1177/1362361319829868 Permalink : https://www.cra-rhone-alpes.org/cid/opac_css/index.php?lvl=notice_display&id=407
in Autism > 23-8 (November 2019) . - p.2112-2130[article] Parent/caregiver perspectives of functioning in autism spectrum disorders: A comparative study in Sweden and South Africa [Texte imprimé et/ou numérique] / M. VILJOEN, Auteur ; S. MAHDI, Auteur ; D. GRIESSEL, Auteur ; Sven BÖLTE, Auteur ; P. J. DE VRIES, Auteur . - p.2112-2130.
Langues : Anglais (eng)
in Autism > 23-8 (November 2019) . - p.2112-2130
Mots-clés : Disability and Health Icf International Classification of Functioning autism spectrum disorder caregiver disability functioning parent Index. décimale : PER Périodiques Résumé : Functional outcomes in autism spectrum disorder can be highly variable given the heterogeneous nature of autism spectrum disorder and its interaction with environmental factors. We set out to compare parent/caregiver perceptions of functioning in two divergent countries that participated in the International Classification of Functioning Disability and Health (ICF) Core Set for Autism Spectrum Disorder development study. We focused on the frequency and content of items reported, and hypothesized that environmental factors would most frequently be reported as barriers to functioning in low-resource settings. Using frequency and qualitative content analysis, we compared data from South Africa (n = 22) and Sweden (n = 13). Frequency agreement was seen in three activities and participation categories, and one environmental factor. Obvious frequency differences were observed in one environmental factors category, six body functions categories and three activities and participation categories. Only three ICF categories (immediate family, attention functions, products and technology for personal use) differed in content. Contrary to our hypotheses, few differences in perspectives about environmental factors emerged. The universality of our findings supports the global usefulness of the recently developed ICF Core Sets for Autism Spectrum Disorder. We recommend that more comparative studies on autism spectrum disorder and functioning should be conducted, and that similar comparisons in other disorders where Core Sets have been developed may be valuable. En ligne : http://dx.doi.org/10.1177/1362361319829868 Permalink : https://www.cra-rhone-alpes.org/cid/opac_css/index.php?lvl=notice_display&id=407 Relations among co-occurring psychopathology in youth with autism spectrum disorder, family resilience, and caregiver coping / Michelle MENEZES in Research in Autism Spectrum Disorders, 85 (July 2021)
[article]
Titre : Relations among co-occurring psychopathology in youth with autism spectrum disorder, family resilience, and caregiver coping Type de document : Texte imprimé et/ou numérique Auteurs : Michelle MENEZES, Auteur ; Melissa F. ROBINSON, Auteur ; Sydney C. SIMMONS, Auteur ; Kathryn R. SMITH, Auteur ; Nicole ZHONG, Auteur ; Micah O. MAZUREK, Auteur Article en page(s) : 101803 Langues : Anglais (eng) Mots-clés : Autism ASD Caregiver Family Comorbid Psychopathology Resilience Coping Index. décimale : PER Périodiques Résumé : Background Co-occurring mental health problems are common in youth with autism spectrum disorder (ASD) and are associated with greater caregiver stress; however, it is not known whether such challenges overwhelm caregivers’ ability to cope. Research has demonstrated that families of children with ASD are able to demonstrate resilience; yet, whether family resilience functions as a compensatory or protective factor in ASD families has not been investigated. This study aimed to examine the relations among family resilience, co-occurring psychopathology in youth with ASD, and caregiver coping. Method Data from this study were obtained from the 2016–2018 National Survey of Children’s Health (NSCH). Multiple binary logistic regression was run to examine the associations among commonly co-occurring psychiatric disorders in youth with ASD (i.e., anxiety, depression, attention-deficit/hyperactivity disorder, and behavioral/conduct problems) and caregiver coping. Another multiple binary logistic regression was run to examine whether family resilience moderates the aforementioned relationships. Results Youth with ASD and co-occurring conduct problems or depression were significantly more likely to be cared for by adults who were not coping well. High family resilience was directly associated with lower odds of poor parental coping; nonetheless, co-occurring conduct problems and depression were still associated with worse coping of caregivers after accounting for family resilience. Conclusions Findings indicate that co-occurring depression and conduct problems in ASD youth may overwhelm their caregivers’ coping resources. Results also suggest that interventions targeting family resilience may improve the coping of adults caring for children and adolescents with ASD. En ligne : https://doi.org/10.1016/j.rasd.2021.101803 Permalink : https://www.cra-rhone-alpes.org/cid/opac_css/index.php?lvl=notice_display&id=458
in Research in Autism Spectrum Disorders > 85 (July 2021) . - 101803[article] Relations among co-occurring psychopathology in youth with autism spectrum disorder, family resilience, and caregiver coping [Texte imprimé et/ou numérique] / Michelle MENEZES, Auteur ; Melissa F. ROBINSON, Auteur ; Sydney C. SIMMONS, Auteur ; Kathryn R. SMITH, Auteur ; Nicole ZHONG, Auteur ; Micah O. MAZUREK, Auteur . - 101803.
Langues : Anglais (eng)
in Research in Autism Spectrum Disorders > 85 (July 2021) . - 101803
Mots-clés : Autism ASD Caregiver Family Comorbid Psychopathology Resilience Coping Index. décimale : PER Périodiques Résumé : Background Co-occurring mental health problems are common in youth with autism spectrum disorder (ASD) and are associated with greater caregiver stress; however, it is not known whether such challenges overwhelm caregivers’ ability to cope. Research has demonstrated that families of children with ASD are able to demonstrate resilience; yet, whether family resilience functions as a compensatory or protective factor in ASD families has not been investigated. This study aimed to examine the relations among family resilience, co-occurring psychopathology in youth with ASD, and caregiver coping. Method Data from this study were obtained from the 2016–2018 National Survey of Children’s Health (NSCH). Multiple binary logistic regression was run to examine the associations among commonly co-occurring psychiatric disorders in youth with ASD (i.e., anxiety, depression, attention-deficit/hyperactivity disorder, and behavioral/conduct problems) and caregiver coping. Another multiple binary logistic regression was run to examine whether family resilience moderates the aforementioned relationships. Results Youth with ASD and co-occurring conduct problems or depression were significantly more likely to be cared for by adults who were not coping well. High family resilience was directly associated with lower odds of poor parental coping; nonetheless, co-occurring conduct problems and depression were still associated with worse coping of caregivers after accounting for family resilience. Conclusions Findings indicate that co-occurring depression and conduct problems in ASD youth may overwhelm their caregivers’ coping resources. Results also suggest that interventions targeting family resilience may improve the coping of adults caring for children and adolescents with ASD. En ligne : https://doi.org/10.1016/j.rasd.2021.101803 Permalink : https://www.cra-rhone-alpes.org/cid/opac_css/index.php?lvl=notice_display&id=458 A review of the quality of primary caregiver-implemented communication intervention research for children with ASD / Ee Rea HONG in Research in Autism Spectrum Disorders, 25 (May 2016)
PermalinkSystematic Review of the Relationship Between Autism Stigma and Informal Caregiver Mental Health / C. PAPADOPOULOS in Journal of Autism and Developmental Disorders, 49-4 (April 2019)
PermalinkVariation in Socio-Economic Burden for Caring of Children with Autism Spectrum Disorder in Oman: Caregiver Perspectives / Yahya M. AL-FARSI in Journal of Autism and Developmental Disorders, 43-5 (May 2013)
PermalinkCaring for Children with an Autism Spectrum Disorder: Factors Associating with Health- and Care-Related Quality of Life of the Caregivers / Leontine W. TEN HOOPEN in Journal of Autism and Developmental Disorders, 52-11 (November 2022)
PermalinkMental Health and Resilient Coping in Caregivers of Autistic Individuals during the COVID-19 Pandemic: Findings from the Families Facing COVID Study / Kelsey A. FRIESEN in Journal of Autism and Developmental Disorders, 52-7 (July 2022)
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