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Program experiences of adults with autism, their families, and providers: Findings from a focus group study / Kaitlin H. KOFFER MILLER in Autism, 22-3 (April 2018)
[article]
Titre : Program experiences of adults with autism, their families, and providers: Findings from a focus group study Type de document : Texte imprimé et/ou numérique Auteurs : Kaitlin H. KOFFER MILLER, Auteur ; M. MATHEW, Auteur ; Stacy L. NONNEMACHER, Auteur ; L. L. SHEA, Auteur Article en page(s) : p.345-356 Langues : Anglais (eng) Mots-clés : Medicaid adult services adults autism spectrum disorder focus groups qualitative Index. décimale : PER Périodiques Résumé : A growing number of individuals with autism spectrum disorder are aging into adulthood. In the United States, Medicaid is the primary payer for services for adults with autism spectrum disorder, yet there are few funded programs that provide dedicated supports to this population. This study examined the experiences of adults with autism spectrum disorder in two Medicaid-funded programs in Pennsylvania through focus groups. Researchers conducted 20 focus groups with a total of 36 adults with autism spectrum disorder, 32 family members, 32 direct care staff, and 20 program administrators. Using thematic analysis, we identified three themes: training needs, community engagement and socialization, and employment. There was a need for additional training to meet the varying needs of program participants including co-occurring diagnoses, sexuality, and long-term planning. Adults with autism spectrum disorder prioritized more individualized community activities based on their interests. Finally, barriers to and strategies for successful employment were discussed. It will be crucial for policy makers to utilize the findings to inform program improvement and development based on the experiences of individuals impacted by these services and systems directly. Additionally, researchers should use the findings from this study to design interventions for adults with autism spectrum disorder as it includes their voices. En ligne : http://dx.doi.org/10.1177/1362361316679000 Permalink : https://www.cra-rhone-alpes.org/cid/opac_css/index.php?lvl=notice_display&id=358
in Autism > 22-3 (April 2018) . - p.345-356[article] Program experiences of adults with autism, their families, and providers: Findings from a focus group study [Texte imprimé et/ou numérique] / Kaitlin H. KOFFER MILLER, Auteur ; M. MATHEW, Auteur ; Stacy L. NONNEMACHER, Auteur ; L. L. SHEA, Auteur . - p.345-356.
Langues : Anglais (eng)
in Autism > 22-3 (April 2018) . - p.345-356
Mots-clés : Medicaid adult services adults autism spectrum disorder focus groups qualitative Index. décimale : PER Périodiques Résumé : A growing number of individuals with autism spectrum disorder are aging into adulthood. In the United States, Medicaid is the primary payer for services for adults with autism spectrum disorder, yet there are few funded programs that provide dedicated supports to this population. This study examined the experiences of adults with autism spectrum disorder in two Medicaid-funded programs in Pennsylvania through focus groups. Researchers conducted 20 focus groups with a total of 36 adults with autism spectrum disorder, 32 family members, 32 direct care staff, and 20 program administrators. Using thematic analysis, we identified three themes: training needs, community engagement and socialization, and employment. There was a need for additional training to meet the varying needs of program participants including co-occurring diagnoses, sexuality, and long-term planning. Adults with autism spectrum disorder prioritized more individualized community activities based on their interests. Finally, barriers to and strategies for successful employment were discussed. It will be crucial for policy makers to utilize the findings to inform program improvement and development based on the experiences of individuals impacted by these services and systems directly. Additionally, researchers should use the findings from this study to design interventions for adults with autism spectrum disorder as it includes their voices. En ligne : http://dx.doi.org/10.1177/1362361316679000 Permalink : https://www.cra-rhone-alpes.org/cid/opac_css/index.php?lvl=notice_display&id=358 "I Would Like for My Child to be Happy with His Life": Parental Hopes for Their Children with ASD Across the Lifespan / E. H. FINKE in Journal of Autism and Developmental Disorders, 49-5 (May 2019)
[article]
Titre : "I Would Like for My Child to be Happy with His Life": Parental Hopes for Their Children with ASD Across the Lifespan Type de document : Texte imprimé et/ou numérique Auteurs : E. H. FINKE, Auteur ; J. M. D. KREMKOW, Auteur ; K. D. R. DRAGER, Auteur ; A. MURILLO, Auteur ; L. RICHARDSON, Auteur ; E. C. SERPENTINE, Auteur Article en page(s) : p.2049-2068 Langues : Anglais (eng) Mots-clés : Focus groups Hopes Outcomes Parenting Index. décimale : PER Périodiques Résumé : The purpose of this project was to understand the hopes of parents with children with ASD. Particularly understudied are the hopes parents have for long-term outcomes for their child. A cross-sectional focus group design was used and six focus groups were completed. These groups included parents of (1) preschool aged children who were recently diagnosed, (2) children in early elementary school, (3) children in later elementary school, (4) children in middle school, (5) children in high school, and (6) children who are adults with ASD. Results indicated 77.4% of the data were devoted to hopes for the children's independence, happiness, and skill improvement; increased authentic socially significant relationships; and future employment. En ligne : http://dx.doi.org/10.1007/s10803-019-03882-9 Permalink : https://www.cra-rhone-alpes.org/cid/opac_css/index.php?lvl=notice_display&id=393
in Journal of Autism and Developmental Disorders > 49-5 (May 2019) . - p.2049-2068[article] "I Would Like for My Child to be Happy with His Life": Parental Hopes for Their Children with ASD Across the Lifespan [Texte imprimé et/ou numérique] / E. H. FINKE, Auteur ; J. M. D. KREMKOW, Auteur ; K. D. R. DRAGER, Auteur ; A. MURILLO, Auteur ; L. RICHARDSON, Auteur ; E. C. SERPENTINE, Auteur . - p.2049-2068.
Langues : Anglais (eng)
in Journal of Autism and Developmental Disorders > 49-5 (May 2019) . - p.2049-2068
Mots-clés : Focus groups Hopes Outcomes Parenting Index. décimale : PER Périodiques Résumé : The purpose of this project was to understand the hopes of parents with children with ASD. Particularly understudied are the hopes parents have for long-term outcomes for their child. A cross-sectional focus group design was used and six focus groups were completed. These groups included parents of (1) preschool aged children who were recently diagnosed, (2) children in early elementary school, (3) children in later elementary school, (4) children in middle school, (5) children in high school, and (6) children who are adults with ASD. Results indicated 77.4% of the data were devoted to hopes for the children's independence, happiness, and skill improvement; increased authentic socially significant relationships; and future employment. En ligne : http://dx.doi.org/10.1007/s10803-019-03882-9 Permalink : https://www.cra-rhone-alpes.org/cid/opac_css/index.php?lvl=notice_display&id=393 The Role of Acceptance in the Transition to Adulthood: A Multi-Informant Comparison of Practitioners, Families, and Youth with Autism / Gloria K. LEE in Journal of Autism and Developmental Disorders, 52-4 (April 2022)
[article]
Titre : The Role of Acceptance in the Transition to Adulthood: A Multi-Informant Comparison of Practitioners, Families, and Youth with Autism Type de document : Texte imprimé et/ou numérique Auteurs : Gloria K. LEE, Auteur ; Sarah L. CURTISS, Auteur ; Hung Jen KUO, Auteur ; Jina CHUN, Auteur ; Heekyung LEE, Auteur ; Danielle D. NIMAKO, Auteur Article en page(s) : p.1444-1457 Langues : Anglais (eng) Mots-clés : Adolescent Adult Autism Spectrum Disorder Autistic Disorder Focus Groups Humans Parents Young Adult Acceptance Autism Families Service providers Young adults Index. décimale : PER Périodiques Résumé : This study investigated the role of acceptance during the transition process among autistic young adults, parents, and practitioners. Six focus groups were run and thematic analysis was used to identify four themes: Youth on the autism spectrum discussed transition as a time where Self-Advocacy and Self-Acceptance were salient. Both youth and parents discussed the Lack of Understanding and Acceptance they experience. Particularly, youth highlighted the lack of understanding of sensory needs and parents underscored the lack of understanding by medical professionals. In contrast, practitioners highlighted the presence of Community Openness. Both practitioners and parents discussed Finding Personal Support through Acceptance. Self-acceptance and acceptance of autism are imperative for autistic young adults and families to achieve well-being. En ligne : http://dx.doi.org/10.1007/s10803-021-05037-1 Permalink : https://www.cra-rhone-alpes.org/cid/opac_css/index.php?lvl=notice_display&id=475
in Journal of Autism and Developmental Disorders > 52-4 (April 2022) . - p.1444-1457[article] The Role of Acceptance in the Transition to Adulthood: A Multi-Informant Comparison of Practitioners, Families, and Youth with Autism [Texte imprimé et/ou numérique] / Gloria K. LEE, Auteur ; Sarah L. CURTISS, Auteur ; Hung Jen KUO, Auteur ; Jina CHUN, Auteur ; Heekyung LEE, Auteur ; Danielle D. NIMAKO, Auteur . - p.1444-1457.
Langues : Anglais (eng)
in Journal of Autism and Developmental Disorders > 52-4 (April 2022) . - p.1444-1457
Mots-clés : Adolescent Adult Autism Spectrum Disorder Autistic Disorder Focus Groups Humans Parents Young Adult Acceptance Autism Families Service providers Young adults Index. décimale : PER Périodiques Résumé : This study investigated the role of acceptance during the transition process among autistic young adults, parents, and practitioners. Six focus groups were run and thematic analysis was used to identify four themes: Youth on the autism spectrum discussed transition as a time where Self-Advocacy and Self-Acceptance were salient. Both youth and parents discussed the Lack of Understanding and Acceptance they experience. Particularly, youth highlighted the lack of understanding of sensory needs and parents underscored the lack of understanding by medical professionals. In contrast, practitioners highlighted the presence of Community Openness. Both practitioners and parents discussed Finding Personal Support through Acceptance. Self-acceptance and acceptance of autism are imperative for autistic young adults and families to achieve well-being. En ligne : http://dx.doi.org/10.1007/s10803-021-05037-1 Permalink : https://www.cra-rhone-alpes.org/cid/opac_css/index.php?lvl=notice_display&id=475 Why are they waiting? Exploring professional perspectives and developing solutions to delayed diagnosis of autism spectrum disorder in adults and children / Marion RUTHERFORD in Research in Autism Spectrum Disorders, 31 (November 2016)
[article]
Titre : Why are they waiting? Exploring professional perspectives and developing solutions to delayed diagnosis of autism spectrum disorder in adults and children Type de document : Texte imprimé et/ou numérique Auteurs : Marion RUTHERFORD, Auteur ; Karen MCKENZIE, Auteur ; Kirsty FORSYTH, Auteur ; Deborah MCCARTNEY, Auteur ; Anne O’HARE, Auteur ; IAIN MCCLURE, Auteur ; Linda IRVINE, Auteur Article en page(s) : p.53-65 Langues : Anglais (eng) Mots-clés : Focus groups Autism spectrum disorder Diagnostic assessment Wait times Index. décimale : PER Périodiques Résumé : AbstractBackground This paper reports on the development of child and adult Action Plans for Autism Spectrum Disorder to address the problem of delayed diagnosis and lengthy waiting times. Evidence used in the development of action plans was gathered from a sequential mixed methods study to further understand the reasons for the long waiting time and potential solutions. This is the first published investigation, from the perspective of diagnosing professional teams, of the reasons for delays, which also generates solutions. Methods Ninety five clinicians from 8 child and 8 adult services attended 16 focus groups to explore clinicians’ views on a) reducing the wait for diagnosis and b) providing a good quality diagnostic process with good adherence to clinical guidelines. During focus groups, quantitative data were fed back, used to frame discussions and facilitate solution focused action planning with each service. Sixteen local action plans were synthesised to create an ASD Action Plan for children and an ASD Action Plan for adults. Results Key solutions are proposed to support the reduction of the wait for diagnostic assessment, through reducing non-attendance rates, reducing inappropriate referrals, developing efficient working and communication and improving the effectiveness of care pathways. These are presented in actions plans for use by clinical teams. Conclusion The first step in addressing the clinical challenge of increased wait for diagnostic assessment of ASD is understanding the complex and multi-factorial reasons for delays. The action plans developed here through systematic enquiry and synthesis may provide clinical diagnostic teams with evidence based guidance on common challenges and solutions to guide future quality improvement programmes. Future research to evaluate whether using Action Plans leads to a reduction in waiting times would be of value. En ligne : http://dx.doi.org/10.1016/j.rasd.2016.06.004 Permalink : https://www.cra-rhone-alpes.org/cid/opac_css/index.php?lvl=notice_display&id=295
in Research in Autism Spectrum Disorders > 31 (November 2016) . - p.53-65[article] Why are they waiting? Exploring professional perspectives and developing solutions to delayed diagnosis of autism spectrum disorder in adults and children [Texte imprimé et/ou numérique] / Marion RUTHERFORD, Auteur ; Karen MCKENZIE, Auteur ; Kirsty FORSYTH, Auteur ; Deborah MCCARTNEY, Auteur ; Anne O’HARE, Auteur ; IAIN MCCLURE, Auteur ; Linda IRVINE, Auteur . - p.53-65.
Langues : Anglais (eng)
in Research in Autism Spectrum Disorders > 31 (November 2016) . - p.53-65
Mots-clés : Focus groups Autism spectrum disorder Diagnostic assessment Wait times Index. décimale : PER Périodiques Résumé : AbstractBackground This paper reports on the development of child and adult Action Plans for Autism Spectrum Disorder to address the problem of delayed diagnosis and lengthy waiting times. Evidence used in the development of action plans was gathered from a sequential mixed methods study to further understand the reasons for the long waiting time and potential solutions. This is the first published investigation, from the perspective of diagnosing professional teams, of the reasons for delays, which also generates solutions. Methods Ninety five clinicians from 8 child and 8 adult services attended 16 focus groups to explore clinicians’ views on a) reducing the wait for diagnosis and b) providing a good quality diagnostic process with good adherence to clinical guidelines. During focus groups, quantitative data were fed back, used to frame discussions and facilitate solution focused action planning with each service. Sixteen local action plans were synthesised to create an ASD Action Plan for children and an ASD Action Plan for adults. Results Key solutions are proposed to support the reduction of the wait for diagnostic assessment, through reducing non-attendance rates, reducing inappropriate referrals, developing efficient working and communication and improving the effectiveness of care pathways. These are presented in actions plans for use by clinical teams. Conclusion The first step in addressing the clinical challenge of increased wait for diagnostic assessment of ASD is understanding the complex and multi-factorial reasons for delays. The action plans developed here through systematic enquiry and synthesis may provide clinical diagnostic teams with evidence based guidance on common challenges and solutions to guide future quality improvement programmes. Future research to evaluate whether using Action Plans leads to a reduction in waiting times would be of value. En ligne : http://dx.doi.org/10.1016/j.rasd.2016.06.004 Permalink : https://www.cra-rhone-alpes.org/cid/opac_css/index.php?lvl=notice_display&id=295