Dépouillements

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 et/ou numérique 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 et/ou numérique] / 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

What should autism research focus upon? Community views and priorities from the United Kingdom / Elizabeth PELLICANO in Autism, 18-7 (October 2014)  

Public ISBD [article]  inAutism > 18-7 (October 2014) . - p.756-770 Titre : What should autism research focus upon? Community views and priorities from the United Kingdom Type de document : Texte imprimé et/ou numérique Auteurs : Elizabeth PELLICANO, Auteur ; Adam DINSMORE, Auteur ; Tony CHARMAN, Auteur Article en page(s) : p.756-770 Langues : Anglais (eng) Mots-clés : autism community  autism research  decision-making  priority setting Index. décimale : PER Périodiques Résumé : The rise in the measured prevalence of autism has been accompanied by much new research and research investment internationally. This study sought to establish whether the pattern of current UK autism research funding maps on to the concerns of the autism community. Interviews and focus groups were conducted with autistic adults, family members, practitioners and researchers to identify their priorities for research. We also captured the views of a large number of stakeholders via an online survey. There was a clear disparity between the United Kingdom’s pattern of funding for autism research and the priorities articulated by the majority of participants. There was general consensus that future priorities for autism research should lie in those areas that make a difference to people’s day-to-day lives. There needs to be greater involvement of the autism community both in priority setting and in research more broadly to ensure that resources reach where they are most needed and can make the most impact. En ligne : http://dx.doi.org/10.1177/1362361314529627 Permalink : https://www.cra-rhone-alpes.org/cid/opac_css/index.php?lvl=notice_display&id=241 [article] What should autism research focus upon? Community views and priorities from the United Kingdom [Texte imprimé et/ou numérique] / Elizabeth PELLICANO, Auteur ; Adam DINSMORE, Auteur ; Tony CHARMAN, Auteur . - p.756-770. Langues : Anglais (eng) in Autism > 18-7 (October 2014) . - p.756-770 Mots-clés : autism community  autism research  decision-making  priority setting Index. décimale : PER Périodiques Résumé : The rise in the measured prevalence of autism has been accompanied by much new research and research investment internationally. This study sought to establish whether the pattern of current UK autism research funding maps on to the concerns of the autism community. Interviews and focus groups were conducted with autistic adults, family members, practitioners and researchers to identify their priorities for research. We also captured the views of a large number of stakeholders via an online survey. There was a clear disparity between the United Kingdom’s pattern of funding for autism research and the priorities articulated by the majority of participants. There was general consensus that future priorities for autism research should lie in those areas that make a difference to people’s day-to-day lives. There needs to be greater involvement of the autism community both in priority setting and in research more broadly to ensure that resources reach where they are most needed and can make the most impact. En ligne : http://dx.doi.org/10.1177/1362361314529627 Permalink : https://www.cra-rhone-alpes.org/cid/opac_css/index.php?lvl=notice_display&id=241

Community engagement and knowledge translation: Progress and challenge in autism research / Mayada ELSABBAGH in Autism, 18-7 (October 2014)  

Public ISBD [article]  inAutism > 18-7 (October 2014) . - p.771-781 Titre : Community engagement and knowledge translation: Progress and challenge in autism research Type de document : Texte imprimé et/ou numérique Auteurs : Mayada ELSABBAGH, Auteur ; Afiqah YUSUF, Auteur ; Shreya PRASANNA, Auteur ; Keiko SHIKAKO-THOMAS, Auteur ; Crystal A RUFF, Auteur ; Michael G FEHLINGS, Auteur Article en page(s) : p.771-781 Langues : Anglais (eng) Mots-clés : community needs  engagement  knowledge translation  low- and middle-income countries Index. décimale : PER Périodiques Résumé : The last decade has seen significant growth in scientific understanding and public awareness of autism. There is still a long road ahead before this awareness can be matched with parallel improvements in evidence-based practice. The process of translating evidence into community care has been hampered by the seeming disconnect between the mainstream scientific research agenda and the immediate priorities of many communities. The need for community engagement in the process of translating knowledge into impact has been recognized. However, there remains little consensus or empirical data regarding the process of such engagement and how to measure its impact. We shed light on a number of engagement models and tools, previously advocated in health research, as they apply to autism research. Furthermore, we illustrate the utility of such tools in supporting identification of knowledge gaps and priorities, using two community-based case studies. The case studies illustrate that information generated from research is indeed relevant and critical for knowledge users in the community. Simple and systematic methods can support the translation and uptake of knowledge in diverse communities, therefore enhancing engagement with research and bridging research findings with immediate community needs. En ligne : http://dx.doi.org/10.1177/1362361314546561 Permalink : https://www.cra-rhone-alpes.org/cid/opac_css/index.php?lvl=notice_display&id=241 [article] Community engagement and knowledge translation: Progress and challenge in autism research [Texte imprimé et/ou numérique] / Mayada ELSABBAGH, Auteur ; Afiqah YUSUF, Auteur ; Shreya PRASANNA, Auteur ; Keiko SHIKAKO-THOMAS, Auteur ; Crystal A RUFF, Auteur ; Michael G FEHLINGS, Auteur . - p.771-781. Langues : Anglais (eng) in Autism > 18-7 (October 2014) . - p.771-781 Mots-clés : community needs  engagement  knowledge translation  low- and middle-income countries Index. décimale : PER Périodiques Résumé : The last decade has seen significant growth in scientific understanding and public awareness of autism. There is still a long road ahead before this awareness can be matched with parallel improvements in evidence-based practice. The process of translating evidence into community care has been hampered by the seeming disconnect between the mainstream scientific research agenda and the immediate priorities of many communities. The need for community engagement in the process of translating knowledge into impact has been recognized. However, there remains little consensus or empirical data regarding the process of such engagement and how to measure its impact. We shed light on a number of engagement models and tools, previously advocated in health research, as they apply to autism research. Furthermore, we illustrate the utility of such tools in supporting identification of knowledge gaps and priorities, using two community-based case studies. The case studies illustrate that information generated from research is indeed relevant and critical for knowledge users in the community. Simple and systematic methods can support the translation and uptake of knowledge in diverse communities, therefore enhancing engagement with research and bridging research findings with immediate community needs. En ligne : http://dx.doi.org/10.1177/1362361314546561 Permalink : https://www.cra-rhone-alpes.org/cid/opac_css/index.php?lvl=notice_display&id=241

Assessing the influence of researcher–partner involvement on the process and outcomes of participatory research in autism spectrum disorder and neurodevelopmental disorders: A scoping review / Jamil JIVRAJ in Autism, 18-7 (October 2014)  

Public ISBD [article]  inAutism > 18-7 (October 2014) . - p.782-793 Titre : Assessing the influence of researcher–partner involvement on the process and outcomes of participatory research in autism spectrum disorder and neurodevelopmental disorders: A scoping review Type de document : Texte imprimé et/ou numérique Auteurs : Jamil JIVRAJ, Auteur ; Lori-Ann R. SACREY, Auteur ; Amanda NEWTON, Auteur ; David B NICHOLAS, Auteur ; Lonnie ZWAIGENBAUM, Auteur Article en page(s) : p.782-793 Langues : Anglais (eng) Mots-clés : autism  neurodevelopmental disorders  participatory research partnerships Index. décimale : PER Périodiques Résumé : Participatory research aims to increase the relevance and broaden the implementation of health research by involving those affected by the outcomes of health studies. Few studies within the field of neurodevelopmental disorders, particularly autism spectrum disorders, have involved autistic individuals as partners. This study sought to identify and characterize published participatory research partnerships between researchers and individuals with autism spectrum disorder or other neurodevelopmental disorders and examine the influence of participatory research partnerships on the research process and reported study outcomes. A search of databases and review of gray literature identified seven studies that described participatory research partnerships between academic researchers and individuals with autism spectrum disorder or other neurodevelopmental disorders. A comparative analysis of the studies revealed two key themes: (1) variations in the participatory research design and (2) limitations during the reporting of the depth of the partner’s involvement. Both themes potentially limit the application and generalizability of the findings. The results of the review are discussed in relation to the use of evaluative frameworks for such participatory research studies to determine the potential benefits of participatory research partnerships within the neurodevelopmental and autism spectrum disorder populations. En ligne : http://dx.doi.org/10.1177/1362361314539858 Permalink : https://www.cra-rhone-alpes.org/cid/opac_css/index.php?lvl=notice_display&id=241 [article] Assessing the influence of researcher–partner involvement on the process and outcomes of participatory research in autism spectrum disorder and neurodevelopmental disorders: A scoping review [Texte imprimé et/ou numérique] / Jamil JIVRAJ, Auteur ; Lori-Ann R. SACREY, Auteur ; Amanda NEWTON, Auteur ; David B NICHOLAS, Auteur ; Lonnie ZWAIGENBAUM, Auteur . - p.782-793. Langues : Anglais (eng) in Autism > 18-7 (October 2014) . - p.782-793 Mots-clés : autism  neurodevelopmental disorders  participatory research partnerships Index. décimale : PER Périodiques Résumé : Participatory research aims to increase the relevance and broaden the implementation of health research by involving those affected by the outcomes of health studies. Few studies within the field of neurodevelopmental disorders, particularly autism spectrum disorders, have involved autistic individuals as partners. This study sought to identify and characterize published participatory research partnerships between researchers and individuals with autism spectrum disorder or other neurodevelopmental disorders and examine the influence of participatory research partnerships on the research process and reported study outcomes. A search of databases and review of gray literature identified seven studies that described participatory research partnerships between academic researchers and individuals with autism spectrum disorder or other neurodevelopmental disorders. A comparative analysis of the studies revealed two key themes: (1) variations in the participatory research design and (2) limitations during the reporting of the depth of the partner’s involvement. Both themes potentially limit the application and generalizability of the findings. The results of the review are discussed in relation to the use of evaluative frameworks for such participatory research studies to determine the potential benefits of participatory research partnerships within the neurodevelopmental and autism spectrum disorder populations. En ligne : http://dx.doi.org/10.1177/1362361314539858 Permalink : https://www.cra-rhone-alpes.org/cid/opac_css/index.php?lvl=notice_display&id=241

Autistic expertise: A critical reflection on the production of knowledge in autism studies / Damian EM MILTON in Autism, 18-7 (October 2014)  

Public ISBD [article]  inAutism > 18-7 (October 2014) . - p.794-802 Titre : Autistic expertise: A critical reflection on the production of knowledge in autism studies Type de document : Texte imprimé et/ou numérique Auteurs : Damian EM MILTON, Auteur Article en page(s) : p.794-802 Langues : Anglais (eng) Mots-clés : autism  expertise  knowledge production  somatic affordance  tacit knowledge Index. décimale : PER Périodiques Résumé : The field of autism studies is a highly disputed territory within which competing contradictory discourses abound. In this field, it is the voices and claims of autistic people regarding their own expertise in knowledge production concerning autism that is most recent in the debate, and traditionally the least attended to. In this article, I utilise the theories of Harry Collins and colleagues in order to reflect upon and conceptualise the various claims to knowledge production and expertise within the field of autism studies, from the perspective of an author who has been diagnosed as being on the autism spectrum. The notion that autistic people lack sociality is problematised, with the suggestion that autistic people are not well described by notions such as the ‘social brain’, or as possessing ‘zero degrees of cognitive empathy’. I then argue, however, that there is a qualitative difference in autistic sociality, and question to what extent such differences are of a biological or cultural nature, and to what extent interactional expertise can be gained by both parties in interactions between autistic and non-autistic people. In conclusion, I argue that autistic people have often become distrustful of researchers and their aims, and are frequently frozen out of the processes of knowledge production. Such a context results in a negative feedback spiral with further damage to the growth of interactional expertise between researchers and autistic people, and a breakdown in trust and communication leading to an increase in tension between stakeholder groups. The involvement of autistic scholars in research and improvements in participatory methods can thus be seen as a requirement, if social research in the field of autism is to claim ethical and epistemological integrity. En ligne : http://dx.doi.org/10.1177/1362361314525281 Permalink : https://www.cra-rhone-alpes.org/cid/opac_css/index.php?lvl=notice_display&id=241 [article] Autistic expertise: A critical reflection on the production of knowledge in autism studies [Texte imprimé et/ou numérique] / Damian EM MILTON, Auteur . - p.794-802. Langues : Anglais (eng) in Autism > 18-7 (October 2014) . - p.794-802 Mots-clés : autism  expertise  knowledge production  somatic affordance  tacit knowledge Index. décimale : PER Périodiques Résumé : The field of autism studies is a highly disputed territory within which competing contradictory discourses abound. In this field, it is the voices and claims of autistic people regarding their own expertise in knowledge production concerning autism that is most recent in the debate, and traditionally the least attended to. In this article, I utilise the theories of Harry Collins and colleagues in order to reflect upon and conceptualise the various claims to knowledge production and expertise within the field of autism studies, from the perspective of an author who has been diagnosed as being on the autism spectrum. The notion that autistic people lack sociality is problematised, with the suggestion that autistic people are not well described by notions such as the ‘social brain’, or as possessing ‘zero degrees of cognitive empathy’. I then argue, however, that there is a qualitative difference in autistic sociality, and question to what extent such differences are of a biological or cultural nature, and to what extent interactional expertise can be gained by both parties in interactions between autistic and non-autistic people. In conclusion, I argue that autistic people have often become distrustful of researchers and their aims, and are frequently frozen out of the processes of knowledge production. Such a context results in a negative feedback spiral with further damage to the growth of interactional expertise between researchers and autistic people, and a breakdown in trust and communication leading to an increase in tension between stakeholder groups. The involvement of autistic scholars in research and improvements in participatory methods can thus be seen as a requirement, if social research in the field of autism is to claim ethical and epistemological integrity. En ligne : http://dx.doi.org/10.1177/1362361314525281 Permalink : https://www.cra-rhone-alpes.org/cid/opac_css/index.php?lvl=notice_display&id=241

US state variation in autism insurance mandates: Balancing access and fairness / Rebecca A JOHNSON in Autism, 18-7 (October 2014)  

Public ISBD [article]  inAutism > 18-7 (October 2014) . - p.803-814 Titre : US state variation in autism insurance mandates: Balancing access and fairness Type de document : Texte imprimé et/ou numérique Auteurs : Rebecca A JOHNSON, Auteur ; Marion DANIS, Auteur ; Chris HAFNER-EATON, Auteur Article en page(s) : p.803-814 Langues : Anglais (eng) Mots-clés : autism  distributive justice  ethics  health policy  private insurance mandates Index. décimale : PER Périodiques Résumé : This article examines how nations split decision-making about health services between federal and sub-federal levels, creating variation between states or provinces. When is this variation ethically acceptable? We identify three sources of ethical acceptability—procedural fairness, value pluralism, and substantive fairness—and examine these sources with respect to a case study: the fact that only 30 out of 51 US states or territories passed mandates requiring private insurers to offer extensive coverage of autism behavioral therapies, creating variation for privately insured children living in different US states. Is this variation ethically acceptable? To address this question, we need to analyze whether mandates go to more or less needy states and whether the mandates reflect value pluralism between states regarding government’s role in health care. Using time-series logistic regressions and data from National Survey of Children with Special Health Care Needs, Individual with Disabilities Education Act, legislature political composition, and American Board of Pediatrics workforce data, we find that the states in which mandates are passed are less needy than states in which mandates have not been passed, what we call a cumulative advantage outcome that increases between-state disparities rather than a compensatory outcome that decreases between-state disparities. Concluding, we discuss the implications of our analysis for broader discussions of variation in health services provision. En ligne : http://dx.doi.org/10.1177/1362361314529191 Permalink : https://www.cra-rhone-alpes.org/cid/opac_css/index.php?lvl=notice_display&id=241 [article] US state variation in autism insurance mandates: Balancing access and fairness [Texte imprimé et/ou numérique] / Rebecca A JOHNSON, Auteur ; Marion DANIS, Auteur ; Chris HAFNER-EATON, Auteur . - p.803-814. Langues : Anglais (eng) in Autism > 18-7 (October 2014) . - p.803-814 Mots-clés : autism  distributive justice  ethics  health policy  private insurance mandates Index. décimale : PER Périodiques Résumé : This article examines how nations split decision-making about health services between federal and sub-federal levels, creating variation between states or provinces. When is this variation ethically acceptable? We identify three sources of ethical acceptability—procedural fairness, value pluralism, and substantive fairness—and examine these sources with respect to a case study: the fact that only 30 out of 51 US states or territories passed mandates requiring private insurers to offer extensive coverage of autism behavioral therapies, creating variation for privately insured children living in different US states. Is this variation ethically acceptable? To address this question, we need to analyze whether mandates go to more or less needy states and whether the mandates reflect value pluralism between states regarding government’s role in health care. Using time-series logistic regressions and data from National Survey of Children with Special Health Care Needs, Individual with Disabilities Education Act, legislature political composition, and American Board of Pediatrics workforce data, we find that the states in which mandates are passed are less needy than states in which mandates have not been passed, what we call a cumulative advantage outcome that increases between-state disparities rather than a compensatory outcome that decreases between-state disparities. Concluding, we discuss the implications of our analysis for broader discussions of variation in health services provision. En ligne : http://dx.doi.org/10.1177/1362361314529191 Permalink : https://www.cra-rhone-alpes.org/cid/opac_css/index.php?lvl=notice_display&id=241

Access to services, quality of care, and family impact for children with autism, other developmental disabilities, and other mental health conditions / Rini VOHRA in Autism, 18-7 (October 2014)  

Public ISBD [article]  inAutism > 18-7 (October 2014) . - p.815-826 Titre : Access to services, quality of care, and family impact for children with autism, other developmental disabilities, and other mental health conditions Type de document : Texte imprimé et/ou numérique Auteurs : Rini VOHRA, Auteur ; Suresh MADHAVAN, Auteur ; Usha SAMBAMOORTHI, Auteur ; Claire ST PETER, Auteur Article en page(s) : p.815-826 Langues : Anglais (eng) Mots-clés : Access to services  autism  autism spectrum disorder health care  burden of autism  developmental disabilities  family impact  mental health condition  quality of care Index. décimale : PER Périodiques Résumé : This cross-sectional study examined perceived access to services, quality of care, and family impact reported by caregivers of children aged 3–17 years with autism spectrum disorders, as compared to caregivers of children with other developmental disabilities and other mental health conditions. The 2009–2010 National Survey of Children with Special Health Care Needs was utilized to examine the association between child’s special needs condition and three outcomes (N = 18,136): access to services (difficulty using services, difficulty getting referrals, lack of source of care, and inadequate insurance coverage), quality of care (lack of care coordination, lack of shared decision making, and no routine screening), and family impact (financial, employment, and time-related burden). Multivariate logistic regressions were performed to compare caregivers of children with autism spectrum disorders to caregivers of children with developmental disabilities (cerebral palsy, Down syndrome, developmental delay, or intellectual disability), mental health conditions (attention deficit hyperactivity disorder, anxiety, behavioral/conduct problems, or depression), or both developmental disabilities and mental health conditions. Caregivers of children with autism spectrum disorders were significantly more likely to report difficulty using services, lack of source of care, inadequate insurance coverage, lack of shared decision making and care coordination, and adverse family impact as compared to caregivers of children with developmental disabilities, mental health conditions, or both. En ligne : http://dx.doi.org/10.1177/1362361313512902 Permalink : https://www.cra-rhone-alpes.org/cid/opac_css/index.php?lvl=notice_display&id=241 [article] Access to services, quality of care, and family impact for children with autism, other developmental disabilities, and other mental health conditions [Texte imprimé et/ou numérique] / Rini VOHRA, Auteur ; Suresh MADHAVAN, Auteur ; Usha SAMBAMOORTHI, Auteur ; Claire ST PETER, Auteur . - p.815-826. Langues : Anglais (eng) in Autism > 18-7 (October 2014) . - p.815-826 Mots-clés : Access to services  autism  autism spectrum disorder health care  burden of autism  developmental disabilities  family impact  mental health condition  quality of care Index. décimale : PER Périodiques Résumé : This cross-sectional study examined perceived access to services, quality of care, and family impact reported by caregivers of children aged 3–17 years with autism spectrum disorders, as compared to caregivers of children with other developmental disabilities and other mental health conditions. The 2009–2010 National Survey of Children with Special Health Care Needs was utilized to examine the association between child’s special needs condition and three outcomes (N = 18,136): access to services (difficulty using services, difficulty getting referrals, lack of source of care, and inadequate insurance coverage), quality of care (lack of care coordination, lack of shared decision making, and no routine screening), and family impact (financial, employment, and time-related burden). Multivariate logistic regressions were performed to compare caregivers of children with autism spectrum disorders to caregivers of children with developmental disabilities (cerebral palsy, Down syndrome, developmental delay, or intellectual disability), mental health conditions (attention deficit hyperactivity disorder, anxiety, behavioral/conduct problems, or depression), or both developmental disabilities and mental health conditions. Caregivers of children with autism spectrum disorders were significantly more likely to report difficulty using services, lack of source of care, inadequate insurance coverage, lack of shared decision making and care coordination, and adverse family impact as compared to caregivers of children with developmental disabilities, mental health conditions, or both. En ligne : http://dx.doi.org/10.1177/1362361313512902 Permalink : https://www.cra-rhone-alpes.org/cid/opac_css/index.php?lvl=notice_display&id=241

A training and development project to improve services and opportunities for social inclusion for children and young people with autism in Romania / Greg PASCO in Autism, 18-7 (October 2014)  

Public ISBD [article]  inAutism > 18-7 (October 2014) . - p.827-831 Titre : A training and development project to improve services and opportunities for social inclusion for children and young people with autism in Romania Type de document : Texte imprimé et/ou numérique Auteurs : Greg PASCO, Auteur ; Bruce CLARK, Auteur ; Ioana DRAGAN, Auteur ; Fidelie KALAMBAYI, Auteur ; Vicky SLONIMS, Auteur ; Adelaide Katerine TARPAN, Auteur ; Kerstin WITTEMEYER, Auteur Article en page(s) : p.827-831 Langues : Anglais (eng) Mots-clés : autism spectrum disorder  awareness raising  computer-based training  low- and middle-income countries  national campaign  Romania  training and development Index. décimale : PER Périodiques Résumé : In 2010, the Romanian Angel Appeal Foundation launched a 3-year national training and development programme to develop and deliver a model of diagnostic and therapeutic services aimed at promoting social inclusion for children and young people with autism spectrum disorders. The project adopted a number of strategies aimed at developing knowledge and skills among professionals and increasing awareness in political and public spheres: (a) a three-stage training programme designed to increase knowledge of autism spectrum disorders and promote best practice among professionals working in services providing for children with autism spectrum disorders and their families, on a nationwide basis; (b) two online courses for general practitioners and psychiatrists, with content relating to the identification, diagnosis and treatment of autism spectrum disorders; (c) a total of 40 counselling and assistance centres for people with autism spectrum disorders were launched in partnership with local authorities; (d) a national strategy for social and professional integration of people with autism spectrum disorders developed through consultation with political, statutory and voluntary sector partners; and (e) a nationwide media campaign to raise awareness of the needs of children and young people with autism spectrum disorders that reached over eight million people. The project provides a transferable model to achieve important improvements in the quantity and quality of services on a national level within a brief time frame. En ligne : http://dx.doi.org/10.1177/1362361314524642 Permalink : https://www.cra-rhone-alpes.org/cid/opac_css/index.php?lvl=notice_display&id=241 [article] A training and development project to improve services and opportunities for social inclusion for children and young people with autism in Romania [Texte imprimé et/ou numérique] / Greg PASCO, Auteur ; Bruce CLARK, Auteur ; Ioana DRAGAN, Auteur ; Fidelie KALAMBAYI, Auteur ; Vicky SLONIMS, Auteur ; Adelaide Katerine TARPAN, Auteur ; Kerstin WITTEMEYER, Auteur . - p.827-831. Langues : Anglais (eng) in Autism > 18-7 (October 2014) . - p.827-831 Mots-clés : autism spectrum disorder  awareness raising  computer-based training  low- and middle-income countries  national campaign  Romania  training and development Index. décimale : PER Périodiques Résumé : In 2010, the Romanian Angel Appeal Foundation launched a 3-year national training and development programme to develop and deliver a model of diagnostic and therapeutic services aimed at promoting social inclusion for children and young people with autism spectrum disorders. The project adopted a number of strategies aimed at developing knowledge and skills among professionals and increasing awareness in political and public spheres: (a) a three-stage training programme designed to increase knowledge of autism spectrum disorders and promote best practice among professionals working in services providing for children with autism spectrum disorders and their families, on a nationwide basis; (b) two online courses for general practitioners and psychiatrists, with content relating to the identification, diagnosis and treatment of autism spectrum disorders; (c) a total of 40 counselling and assistance centres for people with autism spectrum disorders were launched in partnership with local authorities; (d) a national strategy for social and professional integration of people with autism spectrum disorders developed through consultation with political, statutory and voluntary sector partners; and (e) a nationwide media campaign to raise awareness of the needs of children and young people with autism spectrum disorders that reached over eight million people. The project provides a transferable model to achieve important improvements in the quantity and quality of services on a national level within a brief time frame. En ligne : http://dx.doi.org/10.1177/1362361314524642 Permalink : https://www.cra-rhone-alpes.org/cid/opac_css/index.php?lvl=notice_display&id=241

‘Do It Yourself’ in the parent–professional partnership for the assessment and diagnosis of children with autism spectrum conditions in Hong Kong: A qualitative study / Hilda S.W. HO in Autism, 18-7 (October 2014)  

Public ISBD [article]  inAutism > 18-7 (October 2014) . - p.832-844 Titre : ‘Do It Yourself’ in the parent–professional partnership for the assessment and diagnosis of children with autism spectrum conditions in Hong Kong: A qualitative study Type de document : Texte imprimé et/ou numérique Auteurs : Hilda S.W. HO, Auteur ; Huso YI, Auteur ; Sian GRIFFITHS, Auteur ; Dorothy F.Y. CHAN, Auteur ; Stuart MURRAY, Auteur Article en page(s) : p.832-844 Langues : Anglais (eng) Mots-clés : autism spectrum conditions  clinical pathway  Hong Kong  parent–professional partnership  qualitative study Index. décimale : PER Périodiques Résumé : Timely and appropriate care for children with autism spectrum conditions is affected by the interaction between healthcare professionals and parents. Despite the importance of the parent–professional partnership, there is a dearth of cultural-specific data on parent–professional partnership in the Chinese context. We conducted 10 in-depth life-history interviews with parents of children with autism spectrum conditions in Hong Kong who were diagnosed during preschool years. Using an interpretative phenomenological analytic method, five themes were constructed to represent the context of parent–professional partnership in Hong Kong along the pathway of seeking a diagnosis: (a) access to the assessment and diagnosis of autism spectrum conditions, (b) multiple procedures of assessment, (c) consultation prior to diagnosis and assessment, (d) communication of diagnosis and assessment result and (e) post-assessment isolation. Parental narratives highlight the important domains of parent–professional partnership and reflect the complexity of diagnosis and the lack of a cohesive system. For many parents, the assessment procedure was marred by a series of obstacles, which were further exacerbated by a poorly developed parent–professional partnership. Suggestions for parent–professional partnership development include establishing an evidence-based best practice guideline for Hong Kong, creating pre-assessment information workshops for parents to attend and equipping professionals with knowledge about autism spectrum conditions and enhanced communication skills. En ligne : http://dx.doi.org/10.1177/1362361313508230 Permalink : https://www.cra-rhone-alpes.org/cid/opac_css/index.php?lvl=notice_display&id=241 [article] ‘Do It Yourself’ in the parent–professional partnership for the assessment and diagnosis of children with autism spectrum conditions in Hong Kong: A qualitative study [Texte imprimé et/ou numérique] / Hilda S.W. HO, Auteur ; Huso YI, Auteur ; Sian GRIFFITHS, Auteur ; Dorothy F.Y. CHAN, Auteur ; Stuart MURRAY, Auteur . - p.832-844. Langues : Anglais (eng) in Autism > 18-7 (October 2014) . - p.832-844 Mots-clés : autism spectrum conditions  clinical pathway  Hong Kong  parent–professional partnership  qualitative study Index. décimale : PER Périodiques Résumé : Timely and appropriate care for children with autism spectrum conditions is affected by the interaction between healthcare professionals and parents. Despite the importance of the parent–professional partnership, there is a dearth of cultural-specific data on parent–professional partnership in the Chinese context. We conducted 10 in-depth life-history interviews with parents of children with autism spectrum conditions in Hong Kong who were diagnosed during preschool years. Using an interpretative phenomenological analytic method, five themes were constructed to represent the context of parent–professional partnership in Hong Kong along the pathway of seeking a diagnosis: (a) access to the assessment and diagnosis of autism spectrum conditions, (b) multiple procedures of assessment, (c) consultation prior to diagnosis and assessment, (d) communication of diagnosis and assessment result and (e) post-assessment isolation. Parental narratives highlight the important domains of parent–professional partnership and reflect the complexity of diagnosis and the lack of a cohesive system. For many parents, the assessment procedure was marred by a series of obstacles, which were further exacerbated by a poorly developed parent–professional partnership. Suggestions for parent–professional partnership development include establishing an evidence-based best practice guideline for Hong Kong, creating pre-assessment information workshops for parents to attend and equipping professionals with knowledge about autism spectrum conditions and enhanced communication skills. En ligne : http://dx.doi.org/10.1177/1362361313508230 Permalink : https://www.cra-rhone-alpes.org/cid/opac_css/index.php?lvl=notice_display&id=241

Lay Abstracts in Autism, 18-7 (October 2014)  

Public ISBD [article]  inAutism > 18-7 (October 2014) . - p.845-848 Titre : Lay Abstracts Type de document : Texte imprimé et/ou numérique Article en page(s) : p.845-848 Langues : Anglais (eng) Index. décimale : PER Périodiques En ligne : http://dx.doi.org/10.1177/1362361314550273 Permalink : https://www.cra-rhone-alpes.org/cid/opac_css/index.php?lvl=notice_display&id=241 [article] Lay Abstracts [Texte imprimé et/ou numérique] . - p.845-848. Langues : Anglais (eng) in Autism > 18-7 (October 2014) . - p.845-848 Index. décimale : PER Périodiques En ligne : http://dx.doi.org/10.1177/1362361314550273 Permalink : https://www.cra-rhone-alpes.org/cid/opac_css/index.php?lvl=notice_display&id=241