Assuming ability of youth with autism: Synthesis of methods capturing the first-person perspectives of children and youth with disabilities / Rackeb TESFAYE in Autism, 23-8 (November 2019)  

Public ISBD [article]  inAutism > 23-8 (November 2019) . - p.1882-1896 Titre : Assuming ability of youth with autism: Synthesis of methods capturing the first-person perspectives of children and youth with disabilities Type de document : texte imprimé Auteurs : Rackeb TESFAYE, Auteur ; Valérie COURCHESNE, Auteur ; Afiqah YUSUF, Auteur ; Tal SAVION-LEMIEUX, Auteur ; Ilina SINGH, Auteur ; Keiko SHIKAKO-THOMAS, Auteur ; Pat MIRENDA, Auteur ; Charlotte WADDELL, Auteur ; Isabel M. SMITH, Auteur ; David B. NICHOLAS, Auteur ; Peter SZATMARI, Auteur ; Teresa BENNETT, Auteur ; Eric DUKU, Auteur ; Stelios GEORGIADES, Auteur ; Connor M. KERNS, Auteur ; Tracy VAILLANCOURT, Auteur ; Anat ZAIDMAN-ZAIT, Auteur ; Lonnie ZWAIGENBAUM, Auteur ; Mayada ELSABBAGH, Auteur Article en page(s) : p.1882-1896 Langues : Anglais (eng) Mots-clés : Autism  disabilities  first-person perspective  inclusion  lived experience  participatory research Index. décimale : PER Périodiques Résumé : Most research regarding youth with autism spectrum disorder has not focused on their first-person perspectives providing limited insight into methodologies best suited to eliciting their voices. We conducted a synthesis of methods previously used to obtain the first-person perspectives of youth with various disabilities, which may be applicable to youth with autism spectrum disorder. Two-hundred and eighty-four articles met the inclusion criteria of our scoping review. We identified six distinct primary methods (questionnaires, interviews, group discussion, narratives, diaries, and art) expressed through four communication output modalities (language, sign language and gestures, writing, and images). A group of parents who have children with autism spectrum disorder were then presented with a synthesis of results. This parent consultation was used to build on approaches identified in the literature. Parents identified barriers that may be encountered during participant engagement and provided insights on how best to conduct first-person research with youth with autism spectrum disorder. Based on our findings, we present a novel methodological framework to capture the perspectives of youth with various communication and cognitive abilities, while highlighting family, youth, and expert contributions. En ligne : http://dx.doi.org/10.1177/1362361319831487 Permalink : https://www.cra-rhone-alpes.org/cid/opac_css/index.php?lvl=notice_display&id=407 [article] Assuming ability of youth with autism: Synthesis of methods capturing the first-person perspectives of children and youth with disabilities [texte imprimé] / Rackeb TESFAYE, Auteur ; Valérie COURCHESNE, Auteur ; Afiqah YUSUF, Auteur ; Tal SAVION-LEMIEUX, Auteur ; Ilina SINGH, Auteur ; Keiko SHIKAKO-THOMAS, Auteur ; Pat MIRENDA, Auteur ; Charlotte WADDELL, Auteur ; Isabel M. SMITH, Auteur ; David B. NICHOLAS, Auteur ; Peter SZATMARI, Auteur ; Teresa BENNETT, Auteur ; Eric DUKU, Auteur ; Stelios GEORGIADES, Auteur ; Connor M. KERNS, Auteur ; Tracy VAILLANCOURT, Auteur ; Anat ZAIDMAN-ZAIT, Auteur ; Lonnie ZWAIGENBAUM, Auteur ; Mayada ELSABBAGH, Auteur . - p.1882-1896. Langues : Anglais (eng) in Autism > 23-8 (November 2019) . - p.1882-1896 Mots-clés : Autism  disabilities  first-person perspective  inclusion  lived experience  participatory research Index. décimale : PER Périodiques Résumé : Most research regarding youth with autism spectrum disorder has not focused on their first-person perspectives providing limited insight into methodologies best suited to eliciting their voices. We conducted a synthesis of methods previously used to obtain the first-person perspectives of youth with various disabilities, which may be applicable to youth with autism spectrum disorder. Two-hundred and eighty-four articles met the inclusion criteria of our scoping review. We identified six distinct primary methods (questionnaires, interviews, group discussion, narratives, diaries, and art) expressed through four communication output modalities (language, sign language and gestures, writing, and images). A group of parents who have children with autism spectrum disorder were then presented with a synthesis of results. This parent consultation was used to build on approaches identified in the literature. Parents identified barriers that may be encountered during participant engagement and provided insights on how best to conduct first-person research with youth with autism spectrum disorder. Based on our findings, we present a novel methodological framework to capture the perspectives of youth with various communication and cognitive abilities, while highlighting family, youth, and expert contributions. En ligne : http://dx.doi.org/10.1177/1362361319831487 Permalink : https://www.cra-rhone-alpes.org/cid/opac_css/index.php?lvl=notice_display&id=407

Autism research beyond the bench / Ilina SINGH in Autism, 18-7 (October 2014)  

Public ISBD [article]  inAutism > 18-7 (October 2014) . - p.754-755 Titre : Autism research beyond the bench Type de document : texte imprimé Auteurs : Ilina SINGH, Auteur ; Mayada ELSABBAGH, Auteur Article en page(s) : p.754-755 Langues : Anglais (eng) Index. décimale : PER Périodiques En ligne : http://dx.doi.org/10.1177/1362361314548816 Permalink : https://www.cra-rhone-alpes.org/cid/opac_css/index.php?lvl=notice_display&id=241 [article] Autism research beyond the bench [texte imprimé] / Ilina SINGH, Auteur ; Mayada ELSABBAGH, Auteur . - p.754-755. Langues : Anglais (eng) in Autism > 18-7 (October 2014) . - p.754-755 Index. décimale : PER Périodiques En ligne : http://dx.doi.org/10.1177/1362361314548816 Permalink : https://www.cra-rhone-alpes.org/cid/opac_css/index.php?lvl=notice_display&id=241

Autism voices: Perspectives of the needs, challenges, and hopes for the future of autistic youth / Rackeb TESFAYE in Autism, 27-4 (May 2023)  

Public ISBD [article]  inAutism > 27-4 (May 2023) . - p.1142-1156 Titre : Autism voices: Perspectives of the needs, challenges, and hopes for the future of autistic youth Type de document : texte imprimé Auteurs : Rackeb TESFAYE, Auteur ; Valérie COURCHESNE, Auteur ; Pat MIRENDA, Auteur ; Wendy MITCHELL, Auteur ; David B. NICHOLAS, Auteur ; Ilina SINGH, Auteur ; Lonnie ZWAIGENBAUM, Auteur ; Mayada ELSABBAGH, Auteur Article en page(s) : p.1142-1156 Langues : Anglais (eng) Mots-clés : adolescence,first-person perspective,inclusive methods,qualitative research,strength-based Index. décimale : PER Périodiques Résumé : The Autism Voices study draws on novel inclusive methods to obtain the first-person experiences of autistic youth with a range of cognitive and verbal abilities. Thirty-one autistic youth were interviewed with a strength-based protocol, enabling them to provide responses in the modality of their choice. Dynamics between youth and their environments such as home, school, and community were explored. Youth were questioned about their interests, plans for the future, experiences with various emotions, and experience of autism. Based on a thematic analysis, six themes emerged: (1) autistic identities, (2) thinking about the future, (3) seeking social connection on their own terms, (4) seeking autonomy, (5) school as both a stressor and social facilitator, and (6) experiences of stress and anxiety. The experiences described by autistic youth parallel many of the aspirations and challenges of typically developing adolescents, while being uniquely shaped by their autism. We discuss how these insights shared by autistic youth can facilitate active involvement in their communities, promote well-being, and promote optimal transition into adulthood. Autism Voices demonstrates that partnering with multiple stakeholders and the use of inclusive methodologies are pivotal steps toward capturing the voices of all autistic youth.Lay abstractCurrently, our understanding of the adolescent period for autistic youth has relied on the expertise of researchers, clinicians, parents, and teachers, yet rarely involves their unique first-person experiences. Our study attempted to understand the experiences and perspectives of autistic adolescents in their home, school, and community environments using the Autism Voices protocol, a semi-structured interview specifically designed and tailored to engage with autistic youth with various language and intellectual levels. The analysis of the 31 interviews conducted with autistic adolescents aged 11-18 years highlighted six themes: (1) autistic identities, (2) thinking about the future, (3) seeking social connection on their own terms, (4) seeking autonomy, (5) school as both a stressor and social facilitator, and (6) experiences of stress and anxiety. These results highlight similarities and differences in the adolescent experiences of autistic youth compared to their typically developing peers. Our findings suggest that by removing assumptions about the experiences of autistic individuals and investing in inclusive interview methods, we can faithfully capture the experiences of autistic youth regardless of their communication and cognitive abilities. Being able to capture and amplify these diverse voices will facilitate the active involvement of autistic communities in research and clinical and policy decisions that impact them. En ligne : https://doi.org/10.1177/13623613221132108 Permalink : https://www.cra-rhone-alpes.org/cid/opac_css/index.php?lvl=notice_display&id=499 [article] Autism voices: Perspectives of the needs, challenges, and hopes for the future of autistic youth [texte imprimé] / Rackeb TESFAYE, Auteur ; Valérie COURCHESNE, Auteur ; Pat MIRENDA, Auteur ; Wendy MITCHELL, Auteur ; David B. NICHOLAS, Auteur ; Ilina SINGH, Auteur ; Lonnie ZWAIGENBAUM, Auteur ; Mayada ELSABBAGH, Auteur . - p.1142-1156. Langues : Anglais (eng) in Autism > 27-4 (May 2023) . - p.1142-1156 Mots-clés : adolescence,first-person perspective,inclusive methods,qualitative research,strength-based Index. décimale : PER Périodiques Résumé : The Autism Voices study draws on novel inclusive methods to obtain the first-person experiences of autistic youth with a range of cognitive and verbal abilities. Thirty-one autistic youth were interviewed with a strength-based protocol, enabling them to provide responses in the modality of their choice. Dynamics between youth and their environments such as home, school, and community were explored. Youth were questioned about their interests, plans for the future, experiences with various emotions, and experience of autism. Based on a thematic analysis, six themes emerged: (1) autistic identities, (2) thinking about the future, (3) seeking social connection on their own terms, (4) seeking autonomy, (5) school as both a stressor and social facilitator, and (6) experiences of stress and anxiety. The experiences described by autistic youth parallel many of the aspirations and challenges of typically developing adolescents, while being uniquely shaped by their autism. We discuss how these insights shared by autistic youth can facilitate active involvement in their communities, promote well-being, and promote optimal transition into adulthood. Autism Voices demonstrates that partnering with multiple stakeholders and the use of inclusive methodologies are pivotal steps toward capturing the voices of all autistic youth.Lay abstractCurrently, our understanding of the adolescent period for autistic youth has relied on the expertise of researchers, clinicians, parents, and teachers, yet rarely involves their unique first-person experiences. Our study attempted to understand the experiences and perspectives of autistic adolescents in their home, school, and community environments using the Autism Voices protocol, a semi-structured interview specifically designed and tailored to engage with autistic youth with various language and intellectual levels. The analysis of the 31 interviews conducted with autistic adolescents aged 11-18 years highlighted six themes: (1) autistic identities, (2) thinking about the future, (3) seeking social connection on their own terms, (4) seeking autonomy, (5) school as both a stressor and social facilitator, and (6) experiences of stress and anxiety. These results highlight similarities and differences in the adolescent experiences of autistic youth compared to their typically developing peers. Our findings suggest that by removing assumptions about the experiences of autistic individuals and investing in inclusive interview methods, we can faithfully capture the experiences of autistic youth regardless of their communication and cognitive abilities. Being able to capture and amplify these diverse voices will facilitate the active involvement of autistic communities in research and clinical and policy decisions that impact them. En ligne : https://doi.org/10.1177/13623613221132108 Permalink : https://www.cra-rhone-alpes.org/cid/opac_css/index.php?lvl=notice_display&id=499

Cadê o Kauê? Co-design and acceptability testing of a chat-story aimed at enhancing youth participation in the promotion of mental health in Brazil / Sheila Giardini MURTA ; Josimar Antônio de Alcântara MENDES ; Felipe Rodrigues SISTON ; Rafa Ribeiro Alves DE SOUZA ; Rafaela DE OLIVEIRA DA CUNHA ; Julyana ALVES FERREIRA ; Victor Hugo de Lima DE SANTOS ; Brenda Thallys Rocha SEABRA ; TALK2U ; Ilina SINGH in Journal of Child Psychology and Psychiatry, 66-5 (May 2025)  

Public ISBD [article]  inJournal of Child Psychology and Psychiatry > 66-5 (May 2025) . - p.697-715 Titre : Cadê o Kauê? Co-design and acceptability testing of a chat-story aimed at enhancing youth participation in the promotion of mental health in Brazil Type de document : texte imprimé Auteurs : Sheila Giardini MURTA, Auteur ; Josimar Antônio de Alcântara MENDES, Auteur ; Felipe Rodrigues SISTON, Auteur ; Rafa Ribeiro Alves DE SOUZA, Auteur ; Rafaela DE OLIVEIRA DA CUNHA, Auteur ; Julyana ALVES FERREIRA, Auteur ; Victor Hugo de Lima DE SANTOS, Auteur ; Brenda Thallys Rocha SEABRA, Auteur ; TALK2U, Auteur ; Ilina SINGH, Auteur Article en page(s) : p.697-715 Langues : Anglais (eng) Mots-clés : youth participation  video games  storytelling  digital interventions  adolescents  user-centred design  civic engagement  co-design  mental health  wellbeing  co-production  empowerment  peer support  gaming  chatbot Index. décimale : PER Périodiques Résumé : Background Adolescent mental health is vital for public health, yet many interventions fail to recognise adolescents as proactive community contributors. This paper discusses the co-design and acceptability testing of a chat-story intervention to enhance Brazilian adolescents' participation in the promotion of mental health in their peer communities. We specifically highlight the iterative process of co-creating this intervention with community stakeholders. Methods The co-design was led by researchers, a youth collaborative group, and health-tech experts. Part 1 included quantitative (n 1,768) and qualitative (n 46) studies with Brazilian adolescents aged 15 18 for priority-setting. Part 2 involved co-creation and technical production, with input from youth advisors (n 24), school staff (n 11), and policy experts (n 3). In Part 3, the chat-story was user tested (n 32). Parts 4 and 5 assessed acceptability through a qualitative study in schools (n 138) and initial efficacy during an online campaign (n 795). Results Participants aspired to support their peers' mental health in schools, both one-to-one and collectively, but felt unprepared. This informed the chat-story's goal of enhancing peer support and collective action skills. Themes identified during Part 1, such as prejudice and academic pressure, were woven into the narrative to raise awareness of the social determinants of mental health, drawing from real-life stories. In the final story, players search for their missing best friend at school, uncovering his anxiety struggles and practicing skills such as empathic listening and partnership building. A manual for teachers was collaboratively designed for use within school settings, supplementing direct-to-user online applications. Acceptability testing showed participants found the tool authentic and user-friendly. Online users perceived the tool as preparing and motivating them to offer peer support and engage in collective action. Conclusions The immersive co-creation model, enriched by input from key stakeholders, yielded a relevant and well-received intervention for Brazilian adolescents. Co-designed creative tools like chat-stories hold promise as digital mental health tools, fostering awareness, critical reflection, and inspiring adolescents to drive positive social change. En ligne : https://doi.org/10.1111/jcpp.14078 Permalink : https://www.cra-rhone-alpes.org/cid/opac_css/index.php?lvl=notice_display&id=554 [article] Cadê o Kauê? Co-design and acceptability testing of a chat-story aimed at enhancing youth participation in the promotion of mental health in Brazil [texte imprimé] / Sheila Giardini MURTA, Auteur ; Josimar Antônio de Alcântara MENDES, Auteur ; Felipe Rodrigues SISTON, Auteur ; Rafa Ribeiro Alves DE SOUZA, Auteur ; Rafaela DE OLIVEIRA DA CUNHA, Auteur ; Julyana ALVES FERREIRA, Auteur ; Victor Hugo de Lima DE SANTOS, Auteur ; Brenda Thallys Rocha SEABRA, Auteur ; TALK2U, Auteur ; Ilina SINGH, Auteur . - p.697-715. Langues : Anglais (eng) in Journal of Child Psychology and Psychiatry > 66-5 (May 2025) . - p.697-715 Mots-clés : youth participation  video games  storytelling  digital interventions  adolescents  user-centred design  civic engagement  co-design  mental health  wellbeing  co-production  empowerment  peer support  gaming  chatbot Index. décimale : PER Périodiques Résumé : Background Adolescent mental health is vital for public health, yet many interventions fail to recognise adolescents as proactive community contributors. This paper discusses the co-design and acceptability testing of a chat-story intervention to enhance Brazilian adolescents' participation in the promotion of mental health in their peer communities. We specifically highlight the iterative process of co-creating this intervention with community stakeholders. Methods The co-design was led by researchers, a youth collaborative group, and health-tech experts. Part 1 included quantitative (n 1,768) and qualitative (n 46) studies with Brazilian adolescents aged 15 18 for priority-setting. Part 2 involved co-creation and technical production, with input from youth advisors (n 24), school staff (n 11), and policy experts (n 3). In Part 3, the chat-story was user tested (n 32). Parts 4 and 5 assessed acceptability through a qualitative study in schools (n 138) and initial efficacy during an online campaign (n 795). Results Participants aspired to support their peers' mental health in schools, both one-to-one and collectively, but felt unprepared. This informed the chat-story's goal of enhancing peer support and collective action skills. Themes identified during Part 1, such as prejudice and academic pressure, were woven into the narrative to raise awareness of the social determinants of mental health, drawing from real-life stories. In the final story, players search for their missing best friend at school, uncovering his anxiety struggles and practicing skills such as empathic listening and partnership building. A manual for teachers was collaboratively designed for use within school settings, supplementing direct-to-user online applications. Acceptability testing showed participants found the tool authentic and user-friendly. Online users perceived the tool as preparing and motivating them to offer peer support and engage in collective action. Conclusions The immersive co-creation model, enriched by input from key stakeholders, yielded a relevant and well-received intervention for Brazilian adolescents. Co-designed creative tools like chat-stories hold promise as digital mental health tools, fostering awareness, critical reflection, and inspiring adolescents to drive positive social change. En ligne : https://doi.org/10.1111/jcpp.14078 Permalink : https://www.cra-rhone-alpes.org/cid/opac_css/index.php?lvl=notice_display&id=554

Commentary: What makes a life go well? Moral functioning and quality of life measurement in neurodevelopmental disorders – reflections on Jonsson et al. (2017) / Ilina SINGH in Journal of Child Psychology and Psychiatry, 58-4 (April 2017)  

Public ISBD [article]  inJournal of Child Psychology and Psychiatry > 58-4 (April 2017) . - p.470-473 Titre : Commentary: What makes a life go well? Moral functioning and quality of life measurement in neurodevelopmental disorders – reflections on Jonsson et al. (2017) Type de document : texte imprimé Auteurs : Ilina SINGH, Auteur Article en page(s) : p.470-473 Langues : Anglais (eng) Index. décimale : PER Périodiques Résumé : Jonsson et al.'s excellent review of the literature on quality of life (QoL) and childhood mental and behavioural disorders (Jonsson et al., ) highlights the need for studies that utilise child self-reported QoL, in contrast to parent or proxy QoL measures, and further challenges the field to develop QoL measures that ‘put the child's own views and priorities first’. En ligne : http://dx.doi.org/10.1111/jcpp.12716 Permalink : https://www.cra-rhone-alpes.org/cid/opac_css/index.php?lvl=notice_display&id=305 [article] Commentary: What makes a life go well? Moral functioning and quality of life measurement in neurodevelopmental disorders – reflections on Jonsson et al. (2017) [texte imprimé] / Ilina SINGH, Auteur . - p.470-473. Langues : Anglais (eng) in Journal of Child Psychology and Psychiatry > 58-4 (April 2017) . - p.470-473 Index. décimale : PER Périodiques Résumé : Jonsson et al.'s excellent review of the literature on quality of life (QoL) and childhood mental and behavioural disorders (Jonsson et al., ) highlights the need for studies that utilise child self-reported QoL, in contrast to parent or proxy QoL measures, and further challenges the field to develop QoL measures that ‘put the child's own views and priorities first’. En ligne : http://dx.doi.org/10.1111/jcpp.12716 Permalink : https://www.cra-rhone-alpes.org/cid/opac_css/index.php?lvl=notice_display&id=305

Ethical dimensions of translational developmental neuroscience research in autism / Arianna MANZINI in Journal of Child Psychology and Psychiatry, 62-11 (November 2021)  

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