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"What is early intervention? I had no idea": Chinese parents' experiences of early supports for their autistic children in Australia / Jodie SMITH in Research in Autism Spectrum Disorders, 108 (October 2023)
[article]
Titre : "What is early intervention? I had no idea": Chinese parents' experiences of early supports for their autistic children in Australia Type de document : Texte imprimé et/ou numérique Auteurs : Jodie SMITH, Auteur ; Alex AULICH, Auteur ; Catherine A. BENT, Auteur ; Christos CONSTANTINE, Auteur ; Kathleen FRANKS, Auteur ; Nilushi GOONETILLEKE, Auteur ; Cherie C. GREEN, Auteur ; Patricia LEE, Auteur ; Emily MA, Auteur ; Helen SAID, Auteur ; Rena WANG, Auteur ; Sarah WOOD, Auteur ; Kristelle HUDRY, Auteur Article en page(s) : p.102227 Mots-clés : Autism Participatory research Migrants Parent experiences Early intervention Index. décimale : PER Périodiques Résumé : Background Parents should be central to early supports for their autistic children, with parent involvement in and satisfaction with supports influencing child outcomes. Migrant parents likely experience different barriers to navigating and participating in early supports for their autistic children, but we have limited data here. Methods Through a community-partnered participatory approach, we conducted semi-structured interviews with 19 migrant Chinese parents of autistic children about their experiences of the diagnosis and early intervention (EI) process. Interviews were conducted in home languages by other parents. We analysed data using reflexive thematic analysis. Results Parents described myriad obstacles to accessing early supports with many related to being a Chinese migrant in Australia. Parents reported difficulties accepting their children?s differences, faced language barriers, experienced stigmatisation/discrimination, and had limited knowledge of autism supports/systems. Funding issues, limited availability of supports and poorly coordinated services were additional challenges. Parents described having little choice and control over supports, often unable to access culturally-specific services. Nonetheless, parents explained how dedicated they were to their children and effectively utilised informal networks to better access supports for themselves and their children. Accessing EI gave parents hope, providing them with specific goals and strategies. Conclusion It is recommended that professionals clearly communicate with migrant parents about autism and available post-diagnostic autism services/supports, including how to access these. Connecting parents with informal, community-specific services should especially be considered for migrant families. We recommend other potentially useful adaptations to better support migrant Chinese parents in navigating early supports for their autistic children. En ligne : https://doi.org/10.1016/j.rasd.2023.102227 Permalink : https://www.cra-rhone-alpes.org/cid/opac_css/index.php?lvl=notice_display&id=514
in Research in Autism Spectrum Disorders > 108 (October 2023) . - p.102227[article] "What is early intervention? I had no idea": Chinese parents' experiences of early supports for their autistic children in Australia [Texte imprimé et/ou numérique] / Jodie SMITH, Auteur ; Alex AULICH, Auteur ; Catherine A. BENT, Auteur ; Christos CONSTANTINE, Auteur ; Kathleen FRANKS, Auteur ; Nilushi GOONETILLEKE, Auteur ; Cherie C. GREEN, Auteur ; Patricia LEE, Auteur ; Emily MA, Auteur ; Helen SAID, Auteur ; Rena WANG, Auteur ; Sarah WOOD, Auteur ; Kristelle HUDRY, Auteur . - p.102227.
in Research in Autism Spectrum Disorders > 108 (October 2023) . - p.102227
Mots-clés : Autism Participatory research Migrants Parent experiences Early intervention Index. décimale : PER Périodiques Résumé : Background Parents should be central to early supports for their autistic children, with parent involvement in and satisfaction with supports influencing child outcomes. Migrant parents likely experience different barriers to navigating and participating in early supports for their autistic children, but we have limited data here. Methods Through a community-partnered participatory approach, we conducted semi-structured interviews with 19 migrant Chinese parents of autistic children about their experiences of the diagnosis and early intervention (EI) process. Interviews were conducted in home languages by other parents. We analysed data using reflexive thematic analysis. Results Parents described myriad obstacles to accessing early supports with many related to being a Chinese migrant in Australia. Parents reported difficulties accepting their children?s differences, faced language barriers, experienced stigmatisation/discrimination, and had limited knowledge of autism supports/systems. Funding issues, limited availability of supports and poorly coordinated services were additional challenges. Parents described having little choice and control over supports, often unable to access culturally-specific services. Nonetheless, parents explained how dedicated they were to their children and effectively utilised informal networks to better access supports for themselves and their children. Accessing EI gave parents hope, providing them with specific goals and strategies. Conclusion It is recommended that professionals clearly communicate with migrant parents about autism and available post-diagnostic autism services/supports, including how to access these. Connecting parents with informal, community-specific services should especially be considered for migrant families. We recommend other potentially useful adaptations to better support migrant Chinese parents in navigating early supports for their autistic children. En ligne : https://doi.org/10.1016/j.rasd.2023.102227 Permalink : https://www.cra-rhone-alpes.org/cid/opac_css/index.php?lvl=notice_display&id=514 Parents’ Perspectives on Participating in Genetic Research in Autism / Magan TROTTIER in Journal of Autism and Developmental Disorders, 43-3 (March 2013)
[article]
Titre : Parents’ Perspectives on Participating in Genetic Research in Autism Type de document : Texte imprimé et/ou numérique Auteurs : Magan TROTTIER, Auteur ; Wendy ROBERTS, Auteur ; Irene E. DRMIC, Auteur ; Stephen SCHERER, Auteur ; Rosanna WEKSBERG, Auteur ; Cheryl CYTRYNBAUM, Auteur ; David CHITAYAT, Auteur ; Cheryl SHUMAN, Auteur ; Fiona A. MILLER, Auteur Article en page(s) : p.556-568 Langues : Anglais (eng) Mots-clés : Autism Parent experiences Genetic research Motivations Expectations Genetic result Index. décimale : PER Périodiques Résumé : Genetic research in autism depends on the willingness of individuals with autism to participate; thus, there is a duty to assess participants’ needs in the research process. We report on families’ motives and expectations related to their participation in autism genetic research. Respondents valued having a genetic result, as it alleviates guilt, promotes awareness, and may be used to tailor interventions and for family planning. The act of participating was distinctly significant, as it provided personal control, a connection to autism experts, networking with families, and hope for the future. The results of this study highlight complex factors involved in families’ decisions to participate in autism genetic research and provide points to consider for this population of research participants. En ligne : http://dx.doi.org/10.1007/s10803-012-1592-y Permalink : https://www.cra-rhone-alpes.org/cid/opac_css/index.php?lvl=notice_display&id=192
in Journal of Autism and Developmental Disorders > 43-3 (March 2013) . - p.556-568[article] Parents’ Perspectives on Participating in Genetic Research in Autism [Texte imprimé et/ou numérique] / Magan TROTTIER, Auteur ; Wendy ROBERTS, Auteur ; Irene E. DRMIC, Auteur ; Stephen SCHERER, Auteur ; Rosanna WEKSBERG, Auteur ; Cheryl CYTRYNBAUM, Auteur ; David CHITAYAT, Auteur ; Cheryl SHUMAN, Auteur ; Fiona A. MILLER, Auteur . - p.556-568.
Langues : Anglais (eng)
in Journal of Autism and Developmental Disorders > 43-3 (March 2013) . - p.556-568
Mots-clés : Autism Parent experiences Genetic research Motivations Expectations Genetic result Index. décimale : PER Périodiques Résumé : Genetic research in autism depends on the willingness of individuals with autism to participate; thus, there is a duty to assess participants’ needs in the research process. We report on families’ motives and expectations related to their participation in autism genetic research. Respondents valued having a genetic result, as it alleviates guilt, promotes awareness, and may be used to tailor interventions and for family planning. The act of participating was distinctly significant, as it provided personal control, a connection to autism experts, networking with families, and hope for the future. The results of this study highlight complex factors involved in families’ decisions to participate in autism genetic research and provide points to consider for this population of research participants. En ligne : http://dx.doi.org/10.1007/s10803-012-1592-y Permalink : https://www.cra-rhone-alpes.org/cid/opac_css/index.php?lvl=notice_display&id=192