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A portfolio analysis of autism research funding in Aotearoa New Zealand 2007-2021 / Lisa Marie EMERSON in Autism, 27-8 (November 2023)
[article]
Titre : A portfolio analysis of autism research funding in Aotearoa New Zealand 2007-2021 Type de document : Texte imprimé et/ou numérique Auteurs : Lisa Marie EMERSON, Auteur ; Elizabeth PELLICANO, Auteur ; Ruth MONK, Auteur ; Melissa LIM, Auteur ; Jessica HEATON, Auteur ; Laurie MCLAY, Auteur Article en page(s) : p.2256-2268 Mots-clés : autism research autistic community funding research priorities Index. décimale : PER Périodiques Résumé : Previously documented global trends in autism research funding have been skewed towards biology research, which is at odds with the priorities expressed by autistic and autism community members. We aimed to document the areas of autism research that have previously been funded in Aotearoa New Zealand, and to explore the views of the autistic and autism communities on this funding distribution. We searched for research grants awarded to autism research in Aotearoa New Zealand between 2007 and 2021. We categorised the funding for autism research to enable comparison to that previously documented in other countries. We elicited the views of the autistic and autism communities in relation to the funded autism research, through an online survey and a series of focus groups. The largest proportion of money and number of grants was awarded to biological research. Community members expressed dissatisfaction with this pattern of funding, and noted that it does not address the needs and priorities of the autistic community. Community members suggested that the funding pattern indicated a lack of autistic consultation and engagement in research design and funding allocation. The priorities of the autistic and autism communities need to be considered by researchers and funders alike. We discuss how autistic inclusion in research can be supported through decision-making regarding funding and ethics relating to autism research.Lay AbstractWe aimed to document the areas of autism research that have previously been funded in Aotearoa New Zealand. We searched for research grants awarded to autism research in Aotearoa New Zealand between 2007 and 2021. We compared the funding distribution in Aotearoa New Zealand to other countries. We asked people from the autistic community and broader autism community whether they were satisfied with this funding pattern, and whether it aligned with what is important to them and to autistic people. We found that the majority of funding for autism research was awarded to biology research (67%). Members of the autistic and autism communities were dissatisfied with the funding distribution, and expressed a lack of alignment with what is important to them. People from the community indicated that the funding distribution did not address the priorities of autistic people, and that it indicated a lack of engagement with autistic people. Autism research funding needs to reflect the priorities of the autistic and autism communities. Autistic people need to be included in autism research and related funding decisions. En ligne : http://dx.doi.org/10.1177/13623613231155954 Permalink : https://www.cra-rhone-alpes.org/cid/opac_css/index.php?lvl=notice_display&id=513
in Autism > 27-8 (November 2023) . - p.2256-2268[article] A portfolio analysis of autism research funding in Aotearoa New Zealand 2007-2021 [Texte imprimé et/ou numérique] / Lisa Marie EMERSON, Auteur ; Elizabeth PELLICANO, Auteur ; Ruth MONK, Auteur ; Melissa LIM, Auteur ; Jessica HEATON, Auteur ; Laurie MCLAY, Auteur . - p.2256-2268.
in Autism > 27-8 (November 2023) . - p.2256-2268
Mots-clés : autism research autistic community funding research priorities Index. décimale : PER Périodiques Résumé : Previously documented global trends in autism research funding have been skewed towards biology research, which is at odds with the priorities expressed by autistic and autism community members. We aimed to document the areas of autism research that have previously been funded in Aotearoa New Zealand, and to explore the views of the autistic and autism communities on this funding distribution. We searched for research grants awarded to autism research in Aotearoa New Zealand between 2007 and 2021. We categorised the funding for autism research to enable comparison to that previously documented in other countries. We elicited the views of the autistic and autism communities in relation to the funded autism research, through an online survey and a series of focus groups. The largest proportion of money and number of grants was awarded to biological research. Community members expressed dissatisfaction with this pattern of funding, and noted that it does not address the needs and priorities of the autistic community. Community members suggested that the funding pattern indicated a lack of autistic consultation and engagement in research design and funding allocation. The priorities of the autistic and autism communities need to be considered by researchers and funders alike. We discuss how autistic inclusion in research can be supported through decision-making regarding funding and ethics relating to autism research.Lay AbstractWe aimed to document the areas of autism research that have previously been funded in Aotearoa New Zealand. We searched for research grants awarded to autism research in Aotearoa New Zealand between 2007 and 2021. We compared the funding distribution in Aotearoa New Zealand to other countries. We asked people from the autistic community and broader autism community whether they were satisfied with this funding pattern, and whether it aligned with what is important to them and to autistic people. We found that the majority of funding for autism research was awarded to biology research (67%). Members of the autistic and autism communities were dissatisfied with the funding distribution, and expressed a lack of alignment with what is important to them. People from the community indicated that the funding distribution did not address the priorities of autistic people, and that it indicated a lack of engagement with autistic people. Autism research funding needs to reflect the priorities of the autistic and autism communities. Autistic people need to be included in autism research and related funding decisions. En ligne : http://dx.doi.org/10.1177/13623613231155954 Permalink : https://www.cra-rhone-alpes.org/cid/opac_css/index.php?lvl=notice_display&id=513 A scoping review of autism research conducted in Central Asia: Knowledge gaps and research priorities / Gulnoza YAKUBOVA in Autism, 28-2 (February 2024)
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Titre : A scoping review of autism research conducted in Central Asia: Knowledge gaps and research priorities Type de document : Texte imprimé et/ou numérique Auteurs : Gulnoza YAKUBOVA, Auteur Article en page(s) : p.342?354 Mots-clés : autism research Central Asia knowledge gaps Index. décimale : PER Périodiques Résumé : Very little is known about the status of autism research in Central Asia. The purpose of this scoping review was to examine the scope and focus of the peer-reviewed research studies conducted with autistic people and their families in five Central Asian countries?Kazakhstan, Kyrgyzstan, Tajikistan, Turkmenistan, and Uzbekistan. The electronic databases of EBSCO Host and Web of Science were used for systematic search of literature. Eleven articles that met eligibility criteria were included in the review and analyzed for topics and research areas outlined in the Interagency Autism Coordinating Committee Strategic Plan. Ten of these studies were conducted in Kazakhstan and one in Uzbekistan using qualitative, quantitative, and mixed-methods research designs. Five of the seven research areas?Diagnosis, Biology, Risk Factors, Services, and Treatment and Interventions?were represented in these studies, while there were no studies identified in the areas of Lifespan Issues or Infrastructure and Surveillance, highlighting a gap in research. None of the studies reported co-authorship of scientists from Central Asian countries. The review identified knowledge gaps and research needs to guide future research in autism in Central Asia to address the needs of autistic individuals and their families living in this region. Lay abstract Very little is known about the status of autism research in Central Asia. Through the library databases, we identified and reviewed 11 scientific studies conducted with autistic people and their families in five Central Asian countries?Kazakhstan, Kyrgyzstan, Tajikistan, Turkmenistan, and Uzbekistan. Of the 11 studies, 10 were conducted in Kazakhstan and 1 in Uzbekistan. Within these limited number of research studies, different topics such as diagnosis, risk factors of autism, biology, and various service and intervention areas were addressed. We identified several knowledge gaps and research priorities to address the needs of autistic people, their families, and professionals in Central Asia. En ligne : https://dx.doi.org/10.1177/13623613231170553 Permalink : https://www.cra-rhone-alpes.org/cid/opac_css/index.php?lvl=notice_display&id=519
in Autism > 28-2 (February 2024) . - p.342?354[article] A scoping review of autism research conducted in Central Asia: Knowledge gaps and research priorities [Texte imprimé et/ou numérique] / Gulnoza YAKUBOVA, Auteur . - p.342?354.
in Autism > 28-2 (February 2024) . - p.342?354
Mots-clés : autism research Central Asia knowledge gaps Index. décimale : PER Périodiques Résumé : Very little is known about the status of autism research in Central Asia. The purpose of this scoping review was to examine the scope and focus of the peer-reviewed research studies conducted with autistic people and their families in five Central Asian countries?Kazakhstan, Kyrgyzstan, Tajikistan, Turkmenistan, and Uzbekistan. The electronic databases of EBSCO Host and Web of Science were used for systematic search of literature. Eleven articles that met eligibility criteria were included in the review and analyzed for topics and research areas outlined in the Interagency Autism Coordinating Committee Strategic Plan. Ten of these studies were conducted in Kazakhstan and one in Uzbekistan using qualitative, quantitative, and mixed-methods research designs. Five of the seven research areas?Diagnosis, Biology, Risk Factors, Services, and Treatment and Interventions?were represented in these studies, while there were no studies identified in the areas of Lifespan Issues or Infrastructure and Surveillance, highlighting a gap in research. None of the studies reported co-authorship of scientists from Central Asian countries. The review identified knowledge gaps and research needs to guide future research in autism in Central Asia to address the needs of autistic individuals and their families living in this region. Lay abstract Very little is known about the status of autism research in Central Asia. Through the library databases, we identified and reviewed 11 scientific studies conducted with autistic people and their families in five Central Asian countries?Kazakhstan, Kyrgyzstan, Tajikistan, Turkmenistan, and Uzbekistan. Of the 11 studies, 10 were conducted in Kazakhstan and 1 in Uzbekistan. Within these limited number of research studies, different topics such as diagnosis, risk factors of autism, biology, and various service and intervention areas were addressed. We identified several knowledge gaps and research priorities to address the needs of autistic people, their families, and professionals in Central Asia. En ligne : https://dx.doi.org/10.1177/13623613231170553 Permalink : https://www.cra-rhone-alpes.org/cid/opac_css/index.php?lvl=notice_display&id=519 What should autism research focus upon? Community views and priorities from the United Kingdom / Elizabeth PELLICANO in Autism, 18-7 (October 2014)
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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
in Autism > 18-7 (October 2014) . - p.756-770[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 A lost generation? The impact of the COVID-19 pandemic on early career ASD researchers / C. HARROP in Autism Research, 14-6 (June 2021)
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Titre : A lost generation? The impact of the COVID-19 pandemic on early career ASD researchers Type de document : Texte imprimé et/ou numérique Auteurs : C. HARROP, Auteur ; Vanessa H. BAL, Auteur ; Kimberly L. H. CARPENTER, Auteur ; Alycia K. HALLADAY, Auteur Article en page(s) : p.1078-1087 Langues : Anglais (eng) Mots-clés : Autism Spectrum Disorder Biomedical Research/organization & administration/trends Covid-19 Career Mobility Efficiency Humans Mental Health/statistics & numerical data Pandemics Research Personnel/economics/education/psychology autism research early career researchers Index. décimale : PER Périodiques Résumé : The COVID-19 pandemic has disrupted autism research and services. Early career researchers (ECRs) are particularly vulnerable to the impact of the pandemic on job security and career development. The goal of this study was to capture the challenges ECRs are facing during the pandemic and the supports that are needed for career development and research. ECRs were invited to complete an online survey that focused on four major areas; the impact of COVID-19 on their research; changes in productivity due to COVID-19; changes to training due to COVID-19; and current mental health. 150 ECRs were eligible and provided sufficient data for inclusion. All but one ECRs reported their research had been negatively impacted by the pandemic. Reductions in productivity were reported by 85% of ECRs. The biggest impacts included recruitment of participants, increased needs at home and personal mental health. ECRs reported a 3-fold increase in burnout, as well as increased anxiety. ECR supports, such as funding, flexibility, and tenure extensions, are required to ensure ASD research does not suffer from a "lost generation" of researchers. LAY SUMMARY: The COVID-19 pandemic has had negative impacts on research around the world. Loss of productivity impedes autism research discoveries. However, researchers in the earliest phases of their career, specifically postdoctoral fellows through individuals in assistant professor (or equivalent) positions, are particularly vulnerable to long-lasting effects of pandemic-related disruptions which may limit their ability to continue as autism researchers. This survey highlights the needs of this group and identifies mechanisms by which these early career researchers may be supported in this time. This is critical to ensure the next generation of ASD researchers and clinician scientists continue on the path to advancing understanding of autism in the decades to come. En ligne : http://dx.doi.org/10.1002/aur.2503 Permalink : https://www.cra-rhone-alpes.org/cid/opac_css/index.php?lvl=notice_display&id=449
in Autism Research > 14-6 (June 2021) . - p.1078-1087[article] A lost generation? The impact of the COVID-19 pandemic on early career ASD researchers [Texte imprimé et/ou numérique] / C. HARROP, Auteur ; Vanessa H. BAL, Auteur ; Kimberly L. H. CARPENTER, Auteur ; Alycia K. HALLADAY, Auteur . - p.1078-1087.
Langues : Anglais (eng)
in Autism Research > 14-6 (June 2021) . - p.1078-1087
Mots-clés : Autism Spectrum Disorder Biomedical Research/organization & administration/trends Covid-19 Career Mobility Efficiency Humans Mental Health/statistics & numerical data Pandemics Research Personnel/economics/education/psychology autism research early career researchers Index. décimale : PER Périodiques Résumé : The COVID-19 pandemic has disrupted autism research and services. Early career researchers (ECRs) are particularly vulnerable to the impact of the pandemic on job security and career development. The goal of this study was to capture the challenges ECRs are facing during the pandemic and the supports that are needed for career development and research. ECRs were invited to complete an online survey that focused on four major areas; the impact of COVID-19 on their research; changes in productivity due to COVID-19; changes to training due to COVID-19; and current mental health. 150 ECRs were eligible and provided sufficient data for inclusion. All but one ECRs reported their research had been negatively impacted by the pandemic. Reductions in productivity were reported by 85% of ECRs. The biggest impacts included recruitment of participants, increased needs at home and personal mental health. ECRs reported a 3-fold increase in burnout, as well as increased anxiety. ECR supports, such as funding, flexibility, and tenure extensions, are required to ensure ASD research does not suffer from a "lost generation" of researchers. LAY SUMMARY: The COVID-19 pandemic has had negative impacts on research around the world. Loss of productivity impedes autism research discoveries. However, researchers in the earliest phases of their career, specifically postdoctoral fellows through individuals in assistant professor (or equivalent) positions, are particularly vulnerable to long-lasting effects of pandemic-related disruptions which may limit their ability to continue as autism researchers. This survey highlights the needs of this group and identifies mechanisms by which these early career researchers may be supported in this time. This is critical to ensure the next generation of ASD researchers and clinician scientists continue on the path to advancing understanding of autism in the decades to come. En ligne : http://dx.doi.org/10.1002/aur.2503 Permalink : https://www.cra-rhone-alpes.org/cid/opac_css/index.php?lvl=notice_display&id=449