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Challenges and Growth: Lived Experience of Adolescents and Young Adults (AYA) with a Sibling with ASD / Dorothea IANNUZZI in Journal of Autism and Developmental Disorders, 52-6 (June 2022)
[article]
Titre : Challenges and Growth: Lived Experience of Adolescents and Young Adults (AYA) with a Sibling with ASD Type de document : Texte imprimé et/ou numérique Auteurs : Dorothea IANNUZZI, Auteur ; Lucy FELL, Auteur ; Christina LUBERTO, Auteur ; Brett M. GOSHE, Auteur ; Giselle PEREZ, Auteur ; Elyse PARK, Auteur ; Sydney CRUTE, Auteur ; Karen A. KUHLTHAU, Auteur ; Lara TRAEGER, Auteur Article en page(s) : p.2430-2437 Langues : Anglais (eng) Mots-clés : Asd Lived experience Resiliency Sibling Stress coping Stressors Index. décimale : PER Périodiques Résumé : Adolescent and young adult (AYA) siblings of individuals with autism experience unique challenges that can promote both growth and emotional maladjustment. This study explored sibling and parent reports of siblings' lived experiences and identified learning, stressors, and concerns from those experiences. 20 neurotypical (NT) AYA siblings (ages 13-24), and 21 parents were interviewed. Themes that emerged from the data analysis included: (1) learning, empathy, and compassion (2) relationship between the degree of functional impairment and the nature of the sibling relationship; (3) reluctance to share information about siblings with peers; (4) hypervigilance associated with unpredictable behavior; (5) worries and concerns about the future. These findings contribute to the existing literature on the impact and nature of neurotypical siblings' lived experience. En ligne : http://dx.doi.org/10.1007/s10803-021-05135-0 Permalink : https://www.cra-rhone-alpes.org/cid/opac_css/index.php?lvl=notice_display&id=474
in Journal of Autism and Developmental Disorders > 52-6 (June 2022) . - p.2430-2437[article] Challenges and Growth: Lived Experience of Adolescents and Young Adults (AYA) with a Sibling with ASD [Texte imprimé et/ou numérique] / Dorothea IANNUZZI, Auteur ; Lucy FELL, Auteur ; Christina LUBERTO, Auteur ; Brett M. GOSHE, Auteur ; Giselle PEREZ, Auteur ; Elyse PARK, Auteur ; Sydney CRUTE, Auteur ; Karen A. KUHLTHAU, Auteur ; Lara TRAEGER, Auteur . - p.2430-2437.
Langues : Anglais (eng)
in Journal of Autism and Developmental Disorders > 52-6 (June 2022) . - p.2430-2437
Mots-clés : Asd Lived experience Resiliency Sibling Stress coping Stressors Index. décimale : PER Périodiques Résumé : Adolescent and young adult (AYA) siblings of individuals with autism experience unique challenges that can promote both growth and emotional maladjustment. This study explored sibling and parent reports of siblings' lived experiences and identified learning, stressors, and concerns from those experiences. 20 neurotypical (NT) AYA siblings (ages 13-24), and 21 parents were interviewed. Themes that emerged from the data analysis included: (1) learning, empathy, and compassion (2) relationship between the degree of functional impairment and the nature of the sibling relationship; (3) reluctance to share information about siblings with peers; (4) hypervigilance associated with unpredictable behavior; (5) worries and concerns about the future. These findings contribute to the existing literature on the impact and nature of neurotypical siblings' lived experience. En ligne : http://dx.doi.org/10.1007/s10803-021-05135-0 Permalink : https://www.cra-rhone-alpes.org/cid/opac_css/index.php?lvl=notice_display&id=474 "I Met Someone Like Me!": Autistic Adolescents and Their Parents' Experience of the KONTAKT® Social Skills Group Training / Bahareh AFSHARNEJAD in Journal of Autism and Developmental Disorders, 52-4 (April 2022)
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Titre : "I Met Someone Like Me!": Autistic Adolescents and Their Parents' Experience of the KONTAKT® Social Skills Group Training Type de document : Texte imprimé et/ou numérique Auteurs : Bahareh AFSHARNEJAD, Auteur ; Marita FALKMER, Auteur ; Tanya PICEN, Auteur ; Melissa H. BLACK, Auteur ; Tasha ALACH, Auteur ; Anna FRIDELL, Auteur ; Cristina COCO, Auteur ; Kelly MILNE, Auteur ; Jill PERRY, Auteur ; Sven BÖLTE, Auteur ; Sonya GIRDLER, Auteur Article en page(s) : p.1458-1477 Langues : Anglais (eng) Mots-clés : Adolescent Autism Spectrum Disorder Autistic Disorder/therapy Communication Humans Parents Social Skills Adolescents Autism Intervention Lived experience Thematic analysis Index. décimale : PER Périodiques Résumé : This study captured the experiences of 35 autistic adolescents and their parents after completing a 16-session variant of social skills group training KONTAKT® (ACTRN12617001117303). Semi-structured interviews explored participants' and relatives' perceptions of KONTAKT® and associated social outcomes. Adolescents were classified as either high (HR, n=23) or low (LR, n=12) responders based on the primary outcome effects during the previous trial. Thematic analysis revealed that both HR and LR participants their parents were satisfied with KONTAKT®, noting consistent patterns of improvement in adolescents' social understanding, communication, relationships, and empowerment, although positive reports were more frequent among HR than LR groups. This study enhances the understanding of the impact of SSGT, which is key in improving their content, principles, and administration. En ligne : http://dx.doi.org/10.1007/s10803-021-05045-1 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.1458-1477[article] "I Met Someone Like Me!": Autistic Adolescents and Their Parents' Experience of the KONTAKT® Social Skills Group Training [Texte imprimé et/ou numérique] / Bahareh AFSHARNEJAD, Auteur ; Marita FALKMER, Auteur ; Tanya PICEN, Auteur ; Melissa H. BLACK, Auteur ; Tasha ALACH, Auteur ; Anna FRIDELL, Auteur ; Cristina COCO, Auteur ; Kelly MILNE, Auteur ; Jill PERRY, Auteur ; Sven BÖLTE, Auteur ; Sonya GIRDLER, Auteur . - p.1458-1477.
Langues : Anglais (eng)
in Journal of Autism and Developmental Disorders > 52-4 (April 2022) . - p.1458-1477
Mots-clés : Adolescent Autism Spectrum Disorder Autistic Disorder/therapy Communication Humans Parents Social Skills Adolescents Autism Intervention Lived experience Thematic analysis Index. décimale : PER Périodiques Résumé : This study captured the experiences of 35 autistic adolescents and their parents after completing a 16-session variant of social skills group training KONTAKT® (ACTRN12617001117303). Semi-structured interviews explored participants' and relatives' perceptions of KONTAKT® and associated social outcomes. Adolescents were classified as either high (HR, n=23) or low (LR, n=12) responders based on the primary outcome effects during the previous trial. Thematic analysis revealed that both HR and LR participants their parents were satisfied with KONTAKT®, noting consistent patterns of improvement in adolescents' social understanding, communication, relationships, and empowerment, although positive reports were more frequent among HR than LR groups. This study enhances the understanding of the impact of SSGT, which is key in improving their content, principles, and administration. En ligne : http://dx.doi.org/10.1007/s10803-021-05045-1 Permalink : https://www.cra-rhone-alpes.org/cid/opac_css/index.php?lvl=notice_display&id=475 Knowledge of autism gained by learning from people through a local UK Autism Champion Network: A health and social care professional perspective / Louise KIRBY in Autism, 27-8 (November 2023)
[article]
Titre : Knowledge of autism gained by learning from people through a local UK Autism Champion Network: A health and social care professional perspective Type de document : Texte imprimé et/ou numérique Auteurs : Louise KIRBY, Auteur ; Katy-Louise PAYNE, Auteur Article en page(s) : p.2507-2517 Mots-clés : Autism champions autistic collaboration core capabilities framework learning community lived experience training Index. décimale : PER Périodiques Résumé : Few autistic adults perceive that health and social care professionals have good understanding of autism. The countywide Autism Champion Network evaluated here, is an equal partnership of both staff across sectors (Autism Champions) and individuals with lived experience. Autism Champions take knowledge gained back to their teams to support continuous development of services to meet autistic need. This evaluation aims to examine the professional Autism Champions' perceptions of (1) the knowledge gained through their local network and (2) the enablers and potential challenges of disseminating and applying the acquired knowledge. Seven health and social sector professionals participated in semi-structured interviews with thematic analysis identifying the themes 'Learning from People', 'Makes you think of things in a different light' and 'There?s so much going on . . . '. Results indicated that knowledge of autism gained from networking outside their own team was used and valued more than the professional presentations. It included signposting, sharing resources, using contacts to answer questions, and informal learning from autistic people. These results have implications for developing learning for Tier 2 and above staff. In addition, they could inform the development of future Autism Champion Networks to expand professionals' knowledge of autism to reduce health and social care inequalities.Lay abstractThe Autism Act 10 Years On found few autistic adults thought health and social care professionals had a good understanding of autism. Autism training has been made law in the United Kingdom for health and social care staff to tackle health inequality. The county wide Autism Champion Network evaluated here is an equal partnership of interested staff across sectors (Autism Champions) and autistic experts by virtue of lived experience (Autism Advisory Panel). With knowledge flowing both ways, the Autism Champions take learning back to teams to support continuous development of services to meet autistic need. Seven health and social sector professionals from the Network participated in semi-structured interviews on sharing knowledge of autism gained with their teams. All participants provide care and support for autistic people, some working in specialist positions. Results showed that developing new relationships with people outside their own team to signpost to, answer questions and share resources, and informal learning from autistic people, was more valued and used in practice than information gained from presentations. These results have implications in developing learning for those who need above a basic knowledge of autism and may be useful for others considering setting up an Autism Champion Network. En ligne : http://dx.doi.org/10.1177/13623613231167902 Permalink : https://www.cra-rhone-alpes.org/cid/opac_css/index.php?lvl=notice_display&id=514
in Autism > 27-8 (November 2023) . - p.2507-2517[article] Knowledge of autism gained by learning from people through a local UK Autism Champion Network: A health and social care professional perspective [Texte imprimé et/ou numérique] / Louise KIRBY, Auteur ; Katy-Louise PAYNE, Auteur . - p.2507-2517.
in Autism > 27-8 (November 2023) . - p.2507-2517
Mots-clés : Autism champions autistic collaboration core capabilities framework learning community lived experience training Index. décimale : PER Périodiques Résumé : Few autistic adults perceive that health and social care professionals have good understanding of autism. The countywide Autism Champion Network evaluated here, is an equal partnership of both staff across sectors (Autism Champions) and individuals with lived experience. Autism Champions take knowledge gained back to their teams to support continuous development of services to meet autistic need. This evaluation aims to examine the professional Autism Champions' perceptions of (1) the knowledge gained through their local network and (2) the enablers and potential challenges of disseminating and applying the acquired knowledge. Seven health and social sector professionals participated in semi-structured interviews with thematic analysis identifying the themes 'Learning from People', 'Makes you think of things in a different light' and 'There?s so much going on . . . '. Results indicated that knowledge of autism gained from networking outside their own team was used and valued more than the professional presentations. It included signposting, sharing resources, using contacts to answer questions, and informal learning from autistic people. These results have implications for developing learning for Tier 2 and above staff. In addition, they could inform the development of future Autism Champion Networks to expand professionals' knowledge of autism to reduce health and social care inequalities.Lay abstractThe Autism Act 10 Years On found few autistic adults thought health and social care professionals had a good understanding of autism. Autism training has been made law in the United Kingdom for health and social care staff to tackle health inequality. The county wide Autism Champion Network evaluated here is an equal partnership of interested staff across sectors (Autism Champions) and autistic experts by virtue of lived experience (Autism Advisory Panel). With knowledge flowing both ways, the Autism Champions take learning back to teams to support continuous development of services to meet autistic need. Seven health and social sector professionals from the Network participated in semi-structured interviews on sharing knowledge of autism gained with their teams. All participants provide care and support for autistic people, some working in specialist positions. Results showed that developing new relationships with people outside their own team to signpost to, answer questions and share resources, and informal learning from autistic people, was more valued and used in practice than information gained from presentations. These results have implications in developing learning for those who need above a basic knowledge of autism and may be useful for others considering setting up an Autism Champion Network. En ligne : http://dx.doi.org/10.1177/13623613231167902 Permalink : https://www.cra-rhone-alpes.org/cid/opac_css/index.php?lvl=notice_display&id=514 How pupils on the autism spectrum make sense of themselves in the context of their experiences in a mainstream school setting: A qualitative metasynthesis / E. I. WILLIAMS in Autism, 23-1 (January 2019)
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Titre : How pupils on the autism spectrum make sense of themselves in the context of their experiences in a mainstream school setting: A qualitative metasynthesis Type de document : Texte imprimé et/ou numérique Auteurs : E. I. WILLIAMS, Auteur ; K. GLEESON, Auteur ; B. E. JONES, Auteur Article en page(s) : p.8-28 Langues : Anglais (eng) Mots-clés : adolescents autism spectrum disorder lived experience metasummary metasynthesis qualitative research school-aged children self-understanding asperger-syndrome psychological adjustment gender-differences secondary-school peer rejection meta-synthesis children friendship identity students Psychology Index. décimale : PER Périodiques Résumé : Evidence that interpersonal interactions and self-appraisal in social context are crucial in developing self-understanding raises concerns about how pupils with autism spectrum disorder make sense of themselves in school settings where many experience social marginalisation. Metasynthesis was used to systematically extract and integrate findings from qualitative studies examining the mainstream school experiences of these students. Synthesised findings identified three, intermeshing, aspects of experience which contribute to many pupils with autism spectrum disorder making sense of themselves as 'different' to typical peers in a negative way: difficulties linked to autism spectrum disorder; interpersonal relationships, particularly with peers; and accessibility of the school environment. Typical pupils' attitudes and responses towards peers with autism spectrum disorder, unusual sensory reactions to the physical school environment and individual sense-making about the self are highlighted as key areas requiring further research and intervention to improve the experiences, self-esteem and well-being of pupils with autism spectrum disorder in inclusive settings and to inform educational policy and practice. En ligne : http://dx.doi.org/10.1177/1362361317723836 Permalink : https://www.cra-rhone-alpes.org/cid/opac_css/index.php?lvl=notice_display&id=379
in Autism > 23-1 (January 2019) . - p.8-28[article] How pupils on the autism spectrum make sense of themselves in the context of their experiences in a mainstream school setting: A qualitative metasynthesis [Texte imprimé et/ou numérique] / E. I. WILLIAMS, Auteur ; K. GLEESON, Auteur ; B. E. JONES, Auteur . - p.8-28.
Langues : Anglais (eng)
in Autism > 23-1 (January 2019) . - p.8-28
Mots-clés : adolescents autism spectrum disorder lived experience metasummary metasynthesis qualitative research school-aged children self-understanding asperger-syndrome psychological adjustment gender-differences secondary-school peer rejection meta-synthesis children friendship identity students Psychology Index. décimale : PER Périodiques Résumé : Evidence that interpersonal interactions and self-appraisal in social context are crucial in developing self-understanding raises concerns about how pupils with autism spectrum disorder make sense of themselves in school settings where many experience social marginalisation. Metasynthesis was used to systematically extract and integrate findings from qualitative studies examining the mainstream school experiences of these students. Synthesised findings identified three, intermeshing, aspects of experience which contribute to many pupils with autism spectrum disorder making sense of themselves as 'different' to typical peers in a negative way: difficulties linked to autism spectrum disorder; interpersonal relationships, particularly with peers; and accessibility of the school environment. Typical pupils' attitudes and responses towards peers with autism spectrum disorder, unusual sensory reactions to the physical school environment and individual sense-making about the self are highlighted as key areas requiring further research and intervention to improve the experiences, self-esteem and well-being of pupils with autism spectrum disorder in inclusive settings and to inform educational policy and practice. En ligne : http://dx.doi.org/10.1177/1362361317723836 Permalink : https://www.cra-rhone-alpes.org/cid/opac_css/index.php?lvl=notice_display&id=379 'I felt like my senses were under attack': An interpretative phenomenological analysis of experiences of hypersensitivity in autistic individuals / Liesbeth TAELS in Autism, 27-8 (November 2023)
[article]
Titre : 'I felt like my senses were under attack': An interpretative phenomenological analysis of experiences of hypersensitivity in autistic individuals Type de document : Texte imprimé et/ou numérique Auteurs : Liesbeth TAELS, Auteur ; Jasper FEYAERTS, Auteur ; Marie LIZON, Auteur ; Melissa DE SMET, Auteur ; Stijn VANHEULE, Auteur Article en page(s) : p.2269-2280 Mots-clés : autism spectrum disorders embodied subjectivity interpretative phenomenological analysis lived experience sensory processing Index. décimale : PER Périodiques Résumé : While atypical sensory processes have become central to scientific explanatory models of autism, such models usually do not explicitly address first-person experiences of sensory processes by autistic individuals. Detailed phenomenological research of this subjective domain is nonetheless essential to ground explanatory accounts in the actual experiences and challenges faced by autistic individuals. Therefore, our study consisted of an interpretative phenomenological analysis of 18 semi-structured interviews with autistic individuals about their experiences of hypersensitivity. Overall, our analysis showed how hypersensitivity pertained to disturbances at a basic level of bodily self-experience and also affected other crucial phenomenological experiential dimensions such as the subjective perception of time and space, sense-making processes, intersubjectivity, and moods. Hypersensitivities were described by participants as intrusive experiences of being vulnerably exposed to overwhelming stimuli that invaded their bodies and were simultaneously related to an invasive, chaotic, unpredictable or threatening perception of the (social) environment. Our study highlights the impact of hypersensitivities on experiential domains outside the strict sensory register, thereby providing further evidence for altered sensory processing as a potential core mechanism involved in a variety of autistic symptoms. Our study also indicates the clinical importance of therapeutic interventions that act on a fragile sense of embodiment in autism.Lay abstractResearch shows that the way autistic individuals perceive and process sensory stimuli differs from those of non-autistic people. However, while current research often focuses on what sensory differences in autism are and which neurocognitive processes may explain these, it often does not explicitly address what it is like to experience the world through the senses of an autistic person. To explore this understudied dimension, we conducted 18 in-depth interviews with autistic individuals in order to better understand how they personally experienced hypersensitivity from a first-person perspective. Participants described hypersensitivity as a feeling of being bombarded by intrusive stimuli that seemed to invade their bodies and from which they had difficulties distancing themselves. They also indicated how due to hypersensitivity they often perceived their (social) environment as invasive, chaotic, unpredictable or threatening. Hypersensitivities were thus not only described as unsettling bodily experiences but also related to challenges in perceiving, understanding and interacting with the (social) world. By focussing on the subjective dimension of sensory processing in autism, our study thus highlights how sensory difficulties are not peripheral features of autism but play an essential part in the daily challenges faced by autistic individuals. En ligne : http://dx.doi.org/10.1177/13623613231158182 Permalink : https://www.cra-rhone-alpes.org/cid/opac_css/index.php?lvl=notice_display&id=513
in Autism > 27-8 (November 2023) . - p.2269-2280[article] 'I felt like my senses were under attack': An interpretative phenomenological analysis of experiences of hypersensitivity in autistic individuals [Texte imprimé et/ou numérique] / Liesbeth TAELS, Auteur ; Jasper FEYAERTS, Auteur ; Marie LIZON, Auteur ; Melissa DE SMET, Auteur ; Stijn VANHEULE, Auteur . - p.2269-2280.
in Autism > 27-8 (November 2023) . - p.2269-2280
Mots-clés : autism spectrum disorders embodied subjectivity interpretative phenomenological analysis lived experience sensory processing Index. décimale : PER Périodiques Résumé : While atypical sensory processes have become central to scientific explanatory models of autism, such models usually do not explicitly address first-person experiences of sensory processes by autistic individuals. Detailed phenomenological research of this subjective domain is nonetheless essential to ground explanatory accounts in the actual experiences and challenges faced by autistic individuals. Therefore, our study consisted of an interpretative phenomenological analysis of 18 semi-structured interviews with autistic individuals about their experiences of hypersensitivity. Overall, our analysis showed how hypersensitivity pertained to disturbances at a basic level of bodily self-experience and also affected other crucial phenomenological experiential dimensions such as the subjective perception of time and space, sense-making processes, intersubjectivity, and moods. Hypersensitivities were described by participants as intrusive experiences of being vulnerably exposed to overwhelming stimuli that invaded their bodies and were simultaneously related to an invasive, chaotic, unpredictable or threatening perception of the (social) environment. Our study highlights the impact of hypersensitivities on experiential domains outside the strict sensory register, thereby providing further evidence for altered sensory processing as a potential core mechanism involved in a variety of autistic symptoms. Our study also indicates the clinical importance of therapeutic interventions that act on a fragile sense of embodiment in autism.Lay abstractResearch shows that the way autistic individuals perceive and process sensory stimuli differs from those of non-autistic people. However, while current research often focuses on what sensory differences in autism are and which neurocognitive processes may explain these, it often does not explicitly address what it is like to experience the world through the senses of an autistic person. To explore this understudied dimension, we conducted 18 in-depth interviews with autistic individuals in order to better understand how they personally experienced hypersensitivity from a first-person perspective. Participants described hypersensitivity as a feeling of being bombarded by intrusive stimuli that seemed to invade their bodies and from which they had difficulties distancing themselves. They also indicated how due to hypersensitivity they often perceived their (social) environment as invasive, chaotic, unpredictable or threatening. Hypersensitivities were thus not only described as unsettling bodily experiences but also related to challenges in perceiving, understanding and interacting with the (social) world. By focussing on the subjective dimension of sensory processing in autism, our study thus highlights how sensory difficulties are not peripheral features of autism but play an essential part in the daily challenges faced by autistic individuals. En ligne : http://dx.doi.org/10.1177/13623613231158182 Permalink : https://www.cra-rhone-alpes.org/cid/opac_css/index.php?lvl=notice_display&id=513 Intense connection and love: The experiences of autistic mothers / A. S. DUGDALE in Autism, 25-7 (October 2021)
PermalinkIntense connection and love: The experiences of autistic mothers / Amber-Sophie DUGDALE in Autism, 26-7 (October 2022)
Permalink"That impending dread sort of feeling": Experiences of social interaction from the perspectives of autistic adults / Melissa H. BLACK in Research in Autism Spectrum Disorders, 101 (March 2023)
PermalinkAssuming ability of youth with autism: Synthesis of methods capturing the first-person perspectives of children and youth with disabilities / R. TESFAYE in Autism, 23-8 (November 2019)
PermalinkInclusion, Exclusion and Isolation of Autistic People: Community Attitudes and Autistic People's Experiences / S. C. JONES in Journal of Autism and Developmental Disorders, 52-3 (March 2022)
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