Boilson Andrew Martin Validation of a Screening Instrument For Autism Spectrum Disorders Among Primary School Children in Ireland Phd Thesis Dublin City University, Nov 1, 2013
Homeless service users were screened for autism spectrum disorder through one of Ireland’s leadin... more Homeless service users were screened for autism spectrum disorder through one of Ireland’s leading not for profit service providers. Keyworkers acted as proxy informants; their caseloads were screened using the DSM-5—Autistic Traits in the Homeless Interview (DATHI). Client current and historical health and behaviour data was collated. A representative sample of 106 eligible keyworkers caseloads were screened, identifying 3% “present” and 9% “possibly present” for autistic traits with the DATHI. These findings suggest a high estimate of autism prevalence and support emerging evidence that, people with autism are overrepresented in the homeless population, compared to housed populations. Autism may be a risk factor for entry into homelessness and a challenge to exiting homeless and engaging with relevant services.
The Autism Spectrum Disorders in the European Union (ASDEU) survey investigated the knowledge and... more The Autism Spectrum Disorders in the European Union (ASDEU) survey investigated the knowledge and health service experiences of users and providers to generate new hypotheses and scientific investigations that would contribute to improvement in health care for autistic adults. An online survey designed for autistic adults, carers of autistic adults, and professionals in adult services was translated into 11 languages and distributed electronically by organizations and in-country adult service facilities in 2017; 522 autistic adults, 442 carers, and 113 professionals provided answers to the health questions. Professionals, the majority in non-medical services, appeared to be poorly informed about whether certain co-occurring conditions were more frequent in autistic adults than typical adults—especially some medical conditions, suicide attempts, accidents, and pain. A minority of autistic adults reported preventive health behaviors such as routine health check-ups. The majority of us...
There is very little knowledge regarding autistic adult services, practices, and delivery. The st... more There is very little knowledge regarding autistic adult services, practices, and delivery. The study objective was to improve understanding of current services and practices for autistic adults and opportunities for improvement as part of the Autism Spectrum Disorder in the European Union (ASDEU) project. Separate survey versions were created for autistic adults, carers of autistic adults, and professionals in adult services. 2,009 persons responded to the survey and 1,085 (54%) of them completed at least one of the services sections: 469 autistic adults (65% female; 55% <35 years old), 441 carers of autistic adults (27% female; 6% <35 years old), 175 professionals in adult services (76% female; 67% in non-medical services). Top choices by autistic adults, carers or professionals for services best suiting their current needs were: residential services: “help in own home” (adults, carers of high independent adults, professionals), “fulltime residential facility” (carers of low ...
Background The COVID-19 pandemic had a disproportionate effect among residents, family members an... more Background The COVID-19 pandemic had a disproportionate effect among residents, family members and staff in residential care settings for older people in Ireland relative to other health care settings, particularly in wave one of the virus. The purpose of this study was to explore the COVID-19 pandemic as it was experienced by people on the front line of the virus - residents, family members and staff in residential care settings for older people in the Republic of Ireland (ROI). Method A 2-phased mixed methods cross-sectional study was conducted. This consisted of a survey administered anonymously online shortly after the 1st wave of the virus (June - August 2020), via our nursing and health care networks, advocacy organisations for older people and on social media targeting - staff, residents and family members. Family members who took part in the survey were invited to take part in phase 2 - qualitative one-to-one interviews which were conducted shortly after wave 2 of the virus ...
Journal of Autism and Developmental Disorders, 2021
The Autism Spectrum Disorders in the European Union (ASDEU) survey investigated local services’ u... more The Autism Spectrum Disorders in the European Union (ASDEU) survey investigated local services’ use experiences of autistic adults, carers and professionals with interventions for autistic adults. The majority of the 697 participants experienced recommended considerations prior to deciding on intervention and during the intervention plan and implementation. Psychosocial interventions were the most commonly experienced interventions, while pharmacological interventions NOT recommended for core autistic symptoms were reported by fairly large proportions of participants. Family interventions were experienced slightly more commonly by carers than adults or professionals. Less than the 26% of autistic adult responders who had experienced challenging behaviors reported receiving an intervention to change them. These results provide insights for improving gaps in service provision of interventions among autistic adults.
Satisfaction with the detection process of autism and its determinants was investigated using dat... more Satisfaction with the detection process of autism and its determinants was investigated using data from the Autism Spectrum Disorder in the European Union (2015–2018) network. A total of 1342 family members, including 1278 parents, completed an online survey collecting information about their experience and satisfaction with the early detection of autism in their child. Overall, the level of satisfaction varied considerably from one respondent to another. Difficulty in finding information about detection services, lack of professional guidance and support in response to first concerns, finding a diagnostic service on one’s own, and a delay of more than 4 months between the confirmation of concerns and the first appointment with a specialist were all experiences individually associated with greater odds of being less satisfied. Using a dominance analysis approach, we further identified professional guidance and support in response to first concerns as the most important predictor of ...
AIM The aim of this study was to explore the COVID-19 pandemic as it was experienced by people on... more AIM The aim of this study was to explore the COVID-19 pandemic as it was experienced by people on the front line in residential care settings for older people in the Republic of Ireland (ROI). BACKGROUND The COVID-19 pandemic had a disproportionate effect in residential care settings for older people in Ireland. METHODS A 2-phased mixed methods study was conducted, consisting of an online survey administered shortly after the 1st wave of the virus to staff, residents and family members and one-to-one interviews with family members shortly after wave 2 of the virus. RESULTS Isolation, loss of connectedness as well as a reduction in the level/quality of care provision led to significant adverse impacts for both residents and their families. Staff reported high levels of stress, trauma and burnout. Family input to care was suspended, with adverse consequences. IMPLICATIONS FOR NURSING MANAGEMENT Strategies to ensure that residents' physical, emotional and social needs and staffs' professional and personal needs are appropriately supported during future waves of the pandemic should now be implemented. CONCLUSION The pandemic had an extremely adverse impact on residents, family members and staff in care settings for older people.
The multi-national MIDAS (Meaningful Integration of Data Analytics and Services) project is devel... more The multi-national MIDAS (Meaningful Integration of Data Analytics and Services) project is developing a big data platform to facilitate utilisation of a wide range of health and social care data to enable integration of heterogeneous data sources, providing analytics, forecasting tools and bespoke visualisations of actionable epidemiological data. An evaluation framework starting with a logic model and semi-structured interviews using the principles of realist evaluation was developed working with end users and software developers. Parallel case studies were used to address the requirements of stakeholders at critical time points during the project. The objective was to ensure IT systems development is in line with end user requirements. Overall, the early stage interviews findings indicated the logic model is an effective framework for the evaluation of the project.
12th Annual Scientific Meeting of the Irish Society of Human Genetics, Friday 18th September 2009... more 12th Annual Scientific Meeting of the Irish Society of Human Genetics, Friday 18th September 2009. Nursing Building, Dublin City University, Ireland.
Objectives: The main objective of the present work is to describe the strategy of the Autism Spec... more Objectives: The main objective of the present work is to describe the strategy of the Autism Spectrum Disorder in the European Union (ASDEU) project to estimate the prevalence of ASD in school-aged children (7-9 years) across Europe. The focus of the presentation is on the novel field study strategy and aims to be a reflection on what we have learned regarding standardization of study methods across sites, what has worked well and what could be done differently in the future.Funding: Service Contract NUMBER -DG-SANTÉ/2014/C2/035.N/
Journal of Autism and Developmental Disorders, 2021
Research providing an evidence-base for autistic adult services is sparse. The Autism Spectrum Di... more Research providing an evidence-base for autistic adult services is sparse. The Autism Spectrum Disorders in the European Union (ASDEU) network implemented an on-line survey to determine gaps in autistic adult diagnostic evaluation and post-diagnostic support services. More than 55% in all groups experienced most of the recommended features for diagnostic evaluation for autistic adults. In contrast, < 2% of adults or carers, and < 21% of professionals experienced each of the recommended features for post-diagnostic support. In contrast to 61% of professionals, only about 30% of autistic adults and carers had knowledge of good local services models for autism diagnosis in adulthood. There are major differences between good practice guidelines for diagnostic and post-diagnostic care for autistic adults, and what is actually experienced by services users and professionals.
Background: This paper describes the impact evaluation of a large big data platform initiative th... more Background: This paper describes the impact evaluation of a large big data platform initiative that is being undertaken in order to increase the probability of its success. The initiative, MIDAS (Meaningful Integration of Data Analytics and Services), is a European health-based Horizon 2020 project comprising a consortium of members from various universities, research institutions, and government agencies. Objectives: The purpose of the paper is to present a pioneering platform that will support healthcare policymakers in their decision-making by enabling greater and more efficient use of their data. The goal is to present and evaluate the results of the MIDAS project across four countries. Methods/Approach: The literature is replete with examples of worthwhile technology projects that have failed due to user resistance. In order to avoid such failure, and ensure the success of the final MIDAS platform, a detailed impact evaluation is being undertaken at timed periods of development...
MIDAS (Meaningful Integration of Data Analytics and Services) project is developing a big data pl... more MIDAS (Meaningful Integration of Data Analytics and Services) project is developing a big data platform to facilitate the utilisation of a wide range of health and social care data to support better policy making. Our aim is to explore the use of Qmethodology as part of the evaluation of the implementation of the MIDAS project. Q-methodology is used to identify perspectives and viewpoints on a particular topic. In our case, we defined a concourse of statements relevant to project implementation and goals, by working from a logic model previously developed for the evaluation, and structured interviews with project participants. A 36-item concourse was delivered to participants, using the HTMLQ system. Analysis was done in the qmethod package. Participants had a range of professional backgrounds, and a range of roles in the project, including developers, end-users, policy staff, and health professionals. The qsort is carried out at 14 months into the project, a few months before the intended first release of the software being developed. Sixteen people took part, 6 developers, 5 managers, 2 health professionals and 3 others. Three factors (distinct perspectives) were identified in the data. These were tentatively labelled 'Technical optimism', 'Enduser focus' and 'End-user optimism'. These loaded well onto individuals, and there were few consensus statements. Analysis of these factors loaded well onto individuals with a significant number of consensus statements identified.
Background MIDAS (Meaningful Integration of Data Analytics and Services) project is developing a ... more Background MIDAS (Meaningful Integration of Data Analytics and Services) project is developing a big data platform to use a wide range of health and social care data to support better policy making. As part of the project evaluation, we have used Q-methodology, a well established approach, to understand the perspectives of the individual participants on their needs and how the MIDAS system is meeting them, at its current stage of development. Methods We defined a concourse of 36 statements relevant to project implementation and goals, by working from a logic model for the evaluation, and structured interviews with project participants. This was delivered online to participants. Analyses were done in the qmethod package. The first q-sort was done at 14 months into the project. Results 16 people took part, 6 developers, 5 managers, 2 health professionals and 3 others. Three factors were identified in the data. These were tentatively labelled ‘Technical optimism’, ‘End-user focus’ and ...
Boilson Andrew Martin Validation of a Screening Instrument For Autism Spectrum Disorders Among Primary School Children in Ireland Phd Thesis Dublin City University, Nov 1, 2013
Homeless service users were screened for autism spectrum disorder through one of Ireland’s leadin... more Homeless service users were screened for autism spectrum disorder through one of Ireland’s leading not for profit service providers. Keyworkers acted as proxy informants; their caseloads were screened using the DSM-5—Autistic Traits in the Homeless Interview (DATHI). Client current and historical health and behaviour data was collated. A representative sample of 106 eligible keyworkers caseloads were screened, identifying 3% “present” and 9% “possibly present” for autistic traits with the DATHI. These findings suggest a high estimate of autism prevalence and support emerging evidence that, people with autism are overrepresented in the homeless population, compared to housed populations. Autism may be a risk factor for entry into homelessness and a challenge to exiting homeless and engaging with relevant services.
The Autism Spectrum Disorders in the European Union (ASDEU) survey investigated the knowledge and... more The Autism Spectrum Disorders in the European Union (ASDEU) survey investigated the knowledge and health service experiences of users and providers to generate new hypotheses and scientific investigations that would contribute to improvement in health care for autistic adults. An online survey designed for autistic adults, carers of autistic adults, and professionals in adult services was translated into 11 languages and distributed electronically by organizations and in-country adult service facilities in 2017; 522 autistic adults, 442 carers, and 113 professionals provided answers to the health questions. Professionals, the majority in non-medical services, appeared to be poorly informed about whether certain co-occurring conditions were more frequent in autistic adults than typical adults—especially some medical conditions, suicide attempts, accidents, and pain. A minority of autistic adults reported preventive health behaviors such as routine health check-ups. The majority of us...
There is very little knowledge regarding autistic adult services, practices, and delivery. The st... more There is very little knowledge regarding autistic adult services, practices, and delivery. The study objective was to improve understanding of current services and practices for autistic adults and opportunities for improvement as part of the Autism Spectrum Disorder in the European Union (ASDEU) project. Separate survey versions were created for autistic adults, carers of autistic adults, and professionals in adult services. 2,009 persons responded to the survey and 1,085 (54%) of them completed at least one of the services sections: 469 autistic adults (65% female; 55% <35 years old), 441 carers of autistic adults (27% female; 6% <35 years old), 175 professionals in adult services (76% female; 67% in non-medical services). Top choices by autistic adults, carers or professionals for services best suiting their current needs were: residential services: “help in own home” (adults, carers of high independent adults, professionals), “fulltime residential facility” (carers of low ...
Background The COVID-19 pandemic had a disproportionate effect among residents, family members an... more Background The COVID-19 pandemic had a disproportionate effect among residents, family members and staff in residential care settings for older people in Ireland relative to other health care settings, particularly in wave one of the virus. The purpose of this study was to explore the COVID-19 pandemic as it was experienced by people on the front line of the virus - residents, family members and staff in residential care settings for older people in the Republic of Ireland (ROI). Method A 2-phased mixed methods cross-sectional study was conducted. This consisted of a survey administered anonymously online shortly after the 1st wave of the virus (June - August 2020), via our nursing and health care networks, advocacy organisations for older people and on social media targeting - staff, residents and family members. Family members who took part in the survey were invited to take part in phase 2 - qualitative one-to-one interviews which were conducted shortly after wave 2 of the virus ...
Journal of Autism and Developmental Disorders, 2021
The Autism Spectrum Disorders in the European Union (ASDEU) survey investigated local services’ u... more The Autism Spectrum Disorders in the European Union (ASDEU) survey investigated local services’ use experiences of autistic adults, carers and professionals with interventions for autistic adults. The majority of the 697 participants experienced recommended considerations prior to deciding on intervention and during the intervention plan and implementation. Psychosocial interventions were the most commonly experienced interventions, while pharmacological interventions NOT recommended for core autistic symptoms were reported by fairly large proportions of participants. Family interventions were experienced slightly more commonly by carers than adults or professionals. Less than the 26% of autistic adult responders who had experienced challenging behaviors reported receiving an intervention to change them. These results provide insights for improving gaps in service provision of interventions among autistic adults.
Satisfaction with the detection process of autism and its determinants was investigated using dat... more Satisfaction with the detection process of autism and its determinants was investigated using data from the Autism Spectrum Disorder in the European Union (2015–2018) network. A total of 1342 family members, including 1278 parents, completed an online survey collecting information about their experience and satisfaction with the early detection of autism in their child. Overall, the level of satisfaction varied considerably from one respondent to another. Difficulty in finding information about detection services, lack of professional guidance and support in response to first concerns, finding a diagnostic service on one’s own, and a delay of more than 4 months between the confirmation of concerns and the first appointment with a specialist were all experiences individually associated with greater odds of being less satisfied. Using a dominance analysis approach, we further identified professional guidance and support in response to first concerns as the most important predictor of ...
AIM The aim of this study was to explore the COVID-19 pandemic as it was experienced by people on... more AIM The aim of this study was to explore the COVID-19 pandemic as it was experienced by people on the front line in residential care settings for older people in the Republic of Ireland (ROI). BACKGROUND The COVID-19 pandemic had a disproportionate effect in residential care settings for older people in Ireland. METHODS A 2-phased mixed methods study was conducted, consisting of an online survey administered shortly after the 1st wave of the virus to staff, residents and family members and one-to-one interviews with family members shortly after wave 2 of the virus. RESULTS Isolation, loss of connectedness as well as a reduction in the level/quality of care provision led to significant adverse impacts for both residents and their families. Staff reported high levels of stress, trauma and burnout. Family input to care was suspended, with adverse consequences. IMPLICATIONS FOR NURSING MANAGEMENT Strategies to ensure that residents' physical, emotional and social needs and staffs' professional and personal needs are appropriately supported during future waves of the pandemic should now be implemented. CONCLUSION The pandemic had an extremely adverse impact on residents, family members and staff in care settings for older people.
The multi-national MIDAS (Meaningful Integration of Data Analytics and Services) project is devel... more The multi-national MIDAS (Meaningful Integration of Data Analytics and Services) project is developing a big data platform to facilitate utilisation of a wide range of health and social care data to enable integration of heterogeneous data sources, providing analytics, forecasting tools and bespoke visualisations of actionable epidemiological data. An evaluation framework starting with a logic model and semi-structured interviews using the principles of realist evaluation was developed working with end users and software developers. Parallel case studies were used to address the requirements of stakeholders at critical time points during the project. The objective was to ensure IT systems development is in line with end user requirements. Overall, the early stage interviews findings indicated the logic model is an effective framework for the evaluation of the project.
12th Annual Scientific Meeting of the Irish Society of Human Genetics, Friday 18th September 2009... more 12th Annual Scientific Meeting of the Irish Society of Human Genetics, Friday 18th September 2009. Nursing Building, Dublin City University, Ireland.
Objectives: The main objective of the present work is to describe the strategy of the Autism Spec... more Objectives: The main objective of the present work is to describe the strategy of the Autism Spectrum Disorder in the European Union (ASDEU) project to estimate the prevalence of ASD in school-aged children (7-9 years) across Europe. The focus of the presentation is on the novel field study strategy and aims to be a reflection on what we have learned regarding standardization of study methods across sites, what has worked well and what could be done differently in the future.Funding: Service Contract NUMBER -DG-SANTÉ/2014/C2/035.N/
Journal of Autism and Developmental Disorders, 2021
Research providing an evidence-base for autistic adult services is sparse. The Autism Spectrum Di... more Research providing an evidence-base for autistic adult services is sparse. The Autism Spectrum Disorders in the European Union (ASDEU) network implemented an on-line survey to determine gaps in autistic adult diagnostic evaluation and post-diagnostic support services. More than 55% in all groups experienced most of the recommended features for diagnostic evaluation for autistic adults. In contrast, < 2% of adults or carers, and < 21% of professionals experienced each of the recommended features for post-diagnostic support. In contrast to 61% of professionals, only about 30% of autistic adults and carers had knowledge of good local services models for autism diagnosis in adulthood. There are major differences between good practice guidelines for diagnostic and post-diagnostic care for autistic adults, and what is actually experienced by services users and professionals.
Background: This paper describes the impact evaluation of a large big data platform initiative th... more Background: This paper describes the impact evaluation of a large big data platform initiative that is being undertaken in order to increase the probability of its success. The initiative, MIDAS (Meaningful Integration of Data Analytics and Services), is a European health-based Horizon 2020 project comprising a consortium of members from various universities, research institutions, and government agencies. Objectives: The purpose of the paper is to present a pioneering platform that will support healthcare policymakers in their decision-making by enabling greater and more efficient use of their data. The goal is to present and evaluate the results of the MIDAS project across four countries. Methods/Approach: The literature is replete with examples of worthwhile technology projects that have failed due to user resistance. In order to avoid such failure, and ensure the success of the final MIDAS platform, a detailed impact evaluation is being undertaken at timed periods of development...
MIDAS (Meaningful Integration of Data Analytics and Services) project is developing a big data pl... more MIDAS (Meaningful Integration of Data Analytics and Services) project is developing a big data platform to facilitate the utilisation of a wide range of health and social care data to support better policy making. Our aim is to explore the use of Qmethodology as part of the evaluation of the implementation of the MIDAS project. Q-methodology is used to identify perspectives and viewpoints on a particular topic. In our case, we defined a concourse of statements relevant to project implementation and goals, by working from a logic model previously developed for the evaluation, and structured interviews with project participants. A 36-item concourse was delivered to participants, using the HTMLQ system. Analysis was done in the qmethod package. Participants had a range of professional backgrounds, and a range of roles in the project, including developers, end-users, policy staff, and health professionals. The qsort is carried out at 14 months into the project, a few months before the intended first release of the software being developed. Sixteen people took part, 6 developers, 5 managers, 2 health professionals and 3 others. Three factors (distinct perspectives) were identified in the data. These were tentatively labelled 'Technical optimism', 'Enduser focus' and 'End-user optimism'. These loaded well onto individuals, and there were few consensus statements. Analysis of these factors loaded well onto individuals with a significant number of consensus statements identified.
Background MIDAS (Meaningful Integration of Data Analytics and Services) project is developing a ... more Background MIDAS (Meaningful Integration of Data Analytics and Services) project is developing a big data platform to use a wide range of health and social care data to support better policy making. As part of the project evaluation, we have used Q-methodology, a well established approach, to understand the perspectives of the individual participants on their needs and how the MIDAS system is meeting them, at its current stage of development. Methods We defined a concourse of 36 statements relevant to project implementation and goals, by working from a logic model for the evaluation, and structured interviews with project participants. This was delivered online to participants. Analyses were done in the qmethod package. The first q-sort was done at 14 months into the project. Results 16 people took part, 6 developers, 5 managers, 2 health professionals and 3 others. Three factors were identified in the data. These were tentatively labelled ‘Technical optimism’, ‘End-user focus’ and ...
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Papers by Andrew Boilson