91 research outputs found
FlowUnlocked in East London
Who we are: We are a collaborative group of three; Georgia Pavlopoulou, Doctor in Psychology and Mental health, UCL autism researcher & neurodiversity advocate; Jon Adams, neurodivergent polymath, Synaesthete, MHChampion & artist, Briony Campbell, east London photographer, filmmaker & creative facilitator. We are funded by UCL Culture. About our funder We are being funded by UCL Culture (University College London), within the Trellis project. The intentions of Trellis are to connect UCL researchers with local artists and engage the east London communities that surround the new UCL East campus, currently under construction on the Queen Elizabeth Olympic Park. At this stage we have been funded a small amount in order to refine our methodologies and ideas and develop our proposal for a larger project. Your participation in our consultancy group would be helping us to do this. What we’re doing We aim to codesign and codeliver a creative participatory research project, which will seek to illuminate the relationships that matter to autistic people during and after lockdown in east London. We are interested in environmental and sensory relationships as well as interpersonal and human/object/animal relationships. The project will focus on east Londoners. Our intention is to create a space for autistic east Londoners to share their perspectives and ideas on relationships, as part of a knowledge exchange with artists and researchers. This project aims to engage autistic people in collaborative and creative practice. We want to enhance awareness and acceptance of autistic people, by creating honest and compelling public art inspired by how Autisic people relate to the communities and environments around them
“I often have to explain to school staff what she needs”. School experiences of non-autistic siblings growing up with an autistic brother or sister
BACKGROUND: Recent autism research has evidenced a shift from psychological outcomes to contextualised approaches to understanding the varying needs of non autistic siblings of autistic children across different systems. Yet, there is limited research exploring the lived experiences of siblings in their school context. METHODS: First, a group of school aged sibling advisors worked with the first author to codesign research aims, methods and dissemination practices around the topic of the school experiences of siblings who grow up with an autistic brother or sister in the UK. Then, 28 school-aged siblings of autistic children completed adapted photo-elicitation interviews, to discuss their school experiences. A background questionnaire was also administered to their parents and carers. RESULTS: Thematic analysis was employed. The master themes included: (i) Impact of home experiences in schoolwork, including limited personal time and sleep disruptions (ii) Siblings’ school interactions impact on overall school experience, including a wide range of both typical and difficult experiences such as school day disruptions, (iii) Varied perceived levels of support and understanding, including emotional and/or educational support by family members and a sense of connectedness with peers and teachers who are autistic themselves or connected to someone with a diagnosis of autism. IMPLICATIONS: The results underline the ways home experiences can have an impact on school life of siblings, the positive contribution of the autistic school staff and/or staff who have an autistic family member and the need for an organisational culture of inclusivity and widespread acceptance and awareness around issues of neurodiversity. Our findings suggest several implications for school psychologists in core functions of the educational psychologists’ role including training, consultation, assessment, and whole school support. DATA AVAILABILITY STATEMENT: The datasets generated for this study are not readily available because they include sensitive data (photos of siblings’ houses, family members, personal objects, and school timetables). Requests to access the datasets should be directed to corresponding author
Strategies to improve the magnetic resonance imaging experience for autistic individuals: a cross-sectional study exploring parents and carers’ experiences
Background: Autistic individuals encounter numerous barriers in accessing healthcare, including communication difficulties, sensory sensitivities, and a lack of appropriate adjustments. These issues are particularly acute during MRI scans, which involve confined spaces, loud noises, and the necessity to remain still. There remains no unified approach to preparing autistic individuals for MRI procedures. Methods: A cross-sectional online survey was conducted with parents and carers of autistic individuals in the UK to explore their experiences, barriers, and recommendations concerning MRI scans. The survey collected demographic information and experiential accounts of previous MRI procedures. Quantitative data were analysed descriptively, while key themes were identified within the qualitative data through inductive thematic analysis. Results: Sixteen parents/carers participated. The majority reported difficulties with communication, inadequate pre-scan preparation, and insufficient adjustments during MRI scans for their autistic children. Key barriers included an overwhelming sensory environment, radiographers’ limited understanding of autism, and anxiety stemming from uncertainties about the procedure. Recommended improvements encompassed accessible communication, pre-visit familiarisation, noise-reduction and sensory adaptations, staff training on autism, and greater flexibility to meet individual needs. Conclusions: There is an urgent need to enhance MRI experiences for autistic individuals. This can be achieved through improved staff knowledge, effective communication strategies, thorough pre-scan preparation, and tailored reasonable adjustments. Co-producing clear MRI guidelines with the autism community could standardise sensitive practices. An individualised approach is crucial for reducing anxiety and facilitating participation. Empowering radiographers through autism-specific education and incorporating insights from autistic individuals and their families could transform MRI experiences and outcomes
Can Social News Websites Pay for Content and Curation? The SteemIt Cryptocurrency Model
This is an accepted manuscript of an article published by SAGE Publishing in Journal of Information Science on 15/12/2017, available online: https://doi.org/10.1177/0165551517748290
The accepted version of the publication may differ from the final published version.SteemIt is a Reddit-like social news site that pays members for posting and curating content. It uses micropayments backed by a tradeable currency, exploiting the Bitcoin cryptocurrency generation model to finance content provision in conjunction with advertising. If successful, this paradigm might change the way in which volunteer-based sites operate. This paper investigates 925,092 new members’ first posts for insights into what drives financial success in the site. Initial blog posts on average received 20,680.83. Longer, more sentiment-rich or more positive comments with personal information received the greatest financial reward in contrast to more informational or topical content. Thus, there is a clear financial value in starting with a friendly introduction rather than immediately attempting to provide useful content, despite the latter being the ultimate site goal. Follow-up posts also tended to be more successful when more personal, suggesting that interpersonal communication rather than quality content provision has driven the site so far. It remains to be seen whether the model of small typical rewards and the possibility that a post might generate substantially more are enough to incentivise long term participation or a greater focus on informational posts in the long term
National approaches to the vaccination of recently arrived migrants in Europe : A comparative policy analysis across 32 European countries
Funding Information: However, current approaches to the vaccination of migrants have not been well documented to date, and it is acknowledged that there are additional challenges in ensuring equitable access to vaccines in diverse and mobile migrant populations [9,11]. The ongoing refugee crisis has facilitated renewed dialogue around approaches to the screening and vaccination of recently arrived migrants for infectious diseases. The World Health Organization (WHO), United Nations High Commissioner for Refugees, and the United Nations Children's Fund recommended in 2015 that migrants in the WHO European Region should be vaccinated soon after arrival in accordance with the immunisation schedule of the receiving country in which they intend to stay for more than a week [11], and the European Centre for Disease Prevention and Control (ECDC) is currently developing guidance on approaches to vaccine-preventable diseases in newly arrived migrants [12]. However, there has to date been no comprehensive examination of what policies or guidelines are currently implemented across Europe, or how they compare across countries. In order to facilitate the harmonisation of vaccination policies across Europe and identify best practice, a clear understanding of the different policies and of the key gaps or inconsistencies in such policies is needed [13,14]. We therefore did a comparative analysis of policies and guidelines in EU/EEA countries and Switzerland relating to the provision of vaccinations to recently arrived migrants to identify common approached.This research was funded by the European Society of Clinical Microbiology and Infectious Diseases through the ESCMID Study Group for Infections in Travellers and Migrants (ESGITM). LBN, SH, and JSF receive funding from the UK National Institute for Health Research Imperial Biomedical Research Centre, the Imperial College Healthcare Charity, and the Wellcome Trust (Grant number 209993/Z/17/Z). Funding Information: This research was funded by the European Society of Clinical Microbiology and Infectious Diseases through the ESCMID Study Group for Infections in Travellers and Migrants (ESGITM). LBN, SH, and JSF receive funding from the UK National Institute for Health Research Imperial Biomedical Research Centre , the Imperial College Healthcare Charity , and the Wellcome Trust (Grant number 209993/Z/17/Z ). Publisher Copyright: © 2018 The AuthorsBackground: Migrants may be underimmunised and at higher risk of vaccine-preventable diseases, yet there has been no comprehensive examination of what policies are currently implemented across Europe targeting child and adult migrants. We analysed vaccination policies for migrants in 32 EU/EEA countries and Switzerland. Methods: Using framework analysis, we did a comparative analysis of national policies and guidelines pertaining to vaccination in recently arrived migrants through a systematic guideline and literature review and by approaching national experts. Results: Six (18.8%) of 32 countries had comprehensive policies specific to the vaccination of migrants (two focused only on child migrants, four on both adults and children). Nineteen (59.4%) countries applied their national vaccination schedule for migrant vaccinations, predominantly focusing on children; and five (15.6%) countries had circulated additional migrant-specific resources to relevant health-care providers. In six (18.8%) countries, policies on migrant vaccination focused on outbreak-specific vaccines only. In ten (31.3%) countries, policies focused on priority vaccinations, with polio being the vaccine most commonly administered and heterogeneity noted in vaccines recommended to adults, adolescents, and children. Eighteen (56.3%) countries recommended that an individual should be considered as unvaccinated where vaccination records were missing, and vaccines re-administered. Nine (28.1%) countries reported that specific vaccinations were mandatory. Conclusion: There is considerable variation in policies across Europe regarding approaches to vaccination in adult and child migrants, and a lack of clarity on optimum ways forward, what vaccines to offer, with a need for robust research in this area. More emphasis must be placed on ensuring migrant-specific guidance is disseminated to front-line healthcare professionals to improve vaccine delivery and uptake in diverse migration populations across the region.publishersversionPeer reviewe
Seroprevalence of Bordetella pertussis antibodies in adults in Hungary: results of an epidemiological cross-sectional study.
BACKGROUND: Pertussis (whooping cough) is well known to be underreported, particularly among adults, who can act as an infectious reservoir, potentially putting susceptible newborns at risk of serious illness. The purpose of this study was to estimate the seroprevalence of pertussis in adults in Hungary. METHODS: This epidemiological, cross-sectional study was conducted in adults in five general practitioners' practices in Hungary. Serum anti-pertussis toxin immunoglobulin G (anti-PT IgG) antibody levels were analyzed using enzyme-linked immunosorbent assay. Sera were classified following manufacturer's instructions as: strongly indicative of current/recent infection (>/=1.5 optical density [OD] units); indicative of current/recent infection (>/=1.0 OD units); seropositive (>0.3 OD units); or seronegative (/=60 years (odds ratio [OR], 1.97; 95% confidence interval [CI], 1.39-2.80; p = .0002) or 18-29 years (OR, 1.67; 95% CI, 1.13-2.46; p = .0094) vs. 45-59 years; former smoker (OR, 1.46; 95% CI, 1.08-1.97; p = .014) or current smoker (OR, 1.38; 95% CI, 1.01-1.89; p = .045) vs. never smoker; and male (OR, 1.30; 95% CI, 1.01-1.68; p = .041) vs. female. Also, between increased rates of probable current/recent infection and current smoker (OR, 7.50; 95% CI, 2.32-24.31; p = .0008) or former smoker (OR, 4.07; 95% CI, 1.21-13.64; p = .023) vs. never smoker. CONCLUSIONS: Approximately 85% of the adults studied were seronegative and therefore susceptible to pertussis infection. Approximately 1% had anti-PT IgG levels indicative of current/recent pertussis infection, which could potentially be transmitted to susceptible young infants. Vaccination of adults is a key way to indirectly protect infants. TRIAL REGISTRATION: Clinical Trials.gov NCT02014519 . Prospectively registered 12 December 2013
Recommended from our members
Strategies to improve the magnetic resonance imaging experience for autistic individuals: a cross-sectional study exploring parents and carers' experiences
BACKGROUND: Autistic individuals encounter numerous barriers in accessing healthcare, including communication difficulties, sensory sensitivities, and a lack of appropriate adjustments. These issues are particularly acute during MRI scans, which involve confined spaces, loud noises, and the necessity to remain still. There remains no unified approach to preparing autistic individuals for MRI procedures.
METHODS: A cross-sectional online survey was conducted with parents and carers of autistic individuals in the UK to explore their experiences, barriers, and recommendations concerning MRI scans. The survey collected demographic information and experiential accounts of previous MRI procedures. Quantitative data were analysed descriptively, while key themes were identified within the qualitative data through inductive thematic analysis.
RESULTS: Sixteen parents/carers participated. The majority reported difficulties with communication, inadequate pre-scan preparation, and insufficient adjustments during MRI scans for their autistic children. Key barriers included an overwhelming sensory environment, radiographers' limited understanding of autism, and anxiety stemming from uncertainties about the procedure. Recommended improvements encompassed accessible communication, pre-visit familiarisation, noise-reduction and sensory adaptations, staff training on autism, and greater flexibility to meet individual needs.
CONCLUSIONS: There is an urgent need to enhance MRI experiences for autistic individuals. This can be achieved through improved staff knowledge, effective communication strategies, thorough pre-scan preparation, and tailored reasonable adjustments. Co-producing clear MRI guidelines with the autism community could standardise sensitive practices. An individualised approach is crucial for reducing anxiety and facilitating participation. Empowering radiographers through autism-specific education and incorporating insights from autistic individuals and their families could transform MRI experiences and outcomes
Recommended from our members
Toward Autism-Friendly Magnetic Resonance Imaging: Exploring Autistic Individuals' Experiences of Magnetic Resonance Imaging Scans in the United Kingdom, a Cross-Sectional Survey
Background: Autistic individuals might undergo a magnetic resonance imaging (MRI) examination for clinical concerns or research. Increased sensory stimulation, lack of appropriate environmental adjustments, or lack of streamlined communication in the MRI suite may pose challenges to autistic patients and render MRI scans inaccessible. This study aimed at (i) exploring the MRI scan experiences of autistic adults in the United Kingdom; (ii) identifying barriers and enablers toward successful and safe MRI examinations; (iii) assessing autistic individuals' satisfaction with MRI service; and (iv) informing future recommendations for practice improvement.
Methods: We distributed an online survey to the autistic community on social media, using snowball sampling. Inclusion criteria were: being older than 16, have an autism diagnosis or self-diagnosis, self-reported capacity to consent, and having had an MRI scan in the United Kingdom. We used descriptive statistics for demographics, inferential statistics for group comparisons/correlations, and content analysis for qualitative data.
Results: We received 112 responses. A total of 29.6% of the respondents reported not being sent any information before the scan. Most participants (68%) confirmed that radiographers provided detailed information on the day of the examination, but only 17.1% reported that radiographers offered some reasonable environmental adjustments. Only 23.2% of them confirmed they disclosed their autistic identity when booking MRI scanning. We found that quality of communication, physical environment, patient emotions, staff training, and confounding societal factors impacted their MRI experiences. Autistic individuals rated their overall MRI experience as neutral and reported high levels of claustrophobia (44.8%).
Conclusion: This study highlighted a lack of effective communication and coordination of care, either between health care services or between patients and radiographers, and lack of reasonable adjustments as vital for more accessible and person-centered MRI scanning for autistic individuals. Enablers of successful scans included effective communication, adjusted MRI environment, scans tailored to individuals' needs/preferences, and well-trained staff
In silico prediction of cancer immunogens:current state of the art
Cancer kills 8 million annually worldwide. Although survival rates in prevalent cancers continue to increase, many cancers have no effective treatment, prompting the search for new and improved protocols. Immunotherapy is a new and exciting addition to the anti-cancer arsenal. The successful and accurate identification of aberrant host proteins acting as antigens for vaccination and immunotherapy is a key aspiration for both experimental and computational research. Here we describe key elements of in silico prediction, including databases of cancer antigens and bleeding-edge methodology for their prediction. We also highlight the role dendritic cell vaccines can play and how they can act as delivery mechanisms for epitope ensemble vaccines. Immunoinformatics can help streamline the discovery and utility of Cancer Immunogens
- …