scholarly journals Understanding psychiatrists' knowledge, attitudes and experiences in identifying and supporting their patients on the autism spectrum: online survey

BJPsych Open ◽  
2019 ◽  
Vol 5 (3) ◽  
Author(s):  
Laura Crane ◽  
Ian Davidson ◽  
Rachel Prosser ◽  
Elizabeth Pellicano
Keyword(s):  
Online Survey ◽  
Critical Role ◽  
Autism Spectrum ◽  
Self Report ◽  
Personal Connection ◽  
Effective Care ◽  
Care And Support ◽  
Diagnostic Management ◽  
Specific Factors ◽  
The Uk

BackgroundPsychiatrists play a critical role in identifying and supporting their patients on the autism spectrum in the UK, yet little is known about their knowledge, attitudes and experiences in this regard.AimsTo understand psychiatrists' experiences of working with autistic individuals, their confidence in making diagnostic/management decisions and the factors that affect such decisions.MethodA total of 172 psychiatrists took part in an online self-report survey.ResultsMost psychiatrists reported receiving useful training on autism and were knowledgeable about the condition, particularly those with a personal connection to autism. Higher confidence in working with autistic patients was linked to greater levels of autism knowledge, experience and training. Several systemic and autism-specific factors were highlighted by psychiatrists, which were felt to challenge their ability to provide effective care and support for their patients on the autism spectrum.ConclusionsPsychiatrists' views corroborated previous research with the autism community, highlighting the need to co-design services that are accessible, respectful and person-centred.Declaration of interestI.D. is the Royal College of Psychiatrists' Autism Champion.

scholarly journals Manipulating the 5 Dimensions of the EuroQol Instrument: The Effects on Self-Reporting Actual Health and Valuing Hypothetical Health States

2019 ◽  
Vol 39 (4) ◽  
pp. 380-392 ◽  
Author(s):  
Aki Tsuchiya ◽  
Nick Bansback ◽  
Arne Risa Hole ◽  
Brendan Mulhern
Keyword(s):  
Discrete Choice ◽  
Online Survey ◽  
Self Report ◽  
Discrete Choice Experiments ◽  
Health State ◽  
Health States ◽  
Different Types ◽  
Health State Valuations ◽  
The Uk ◽  
Actual Health

Background. The EQ-5D instrument has 5 dimensions. This article reports on the effects of manipulating a) the order in which the 5 dimensions are presented (appearing first v. last), b) splitting of the composite dimensions (“pain or discomfort” and “anxiety or depression”), and c) removing or “bolting off” 1 of the 5 EQ-5D dimensions at a time. The effects were examined in 2 contexts: 1) self-reporting health and 2) health state valuations. Methods. Three different types of discrete choice experiments (DCE) including a duration attribute were designed. An online survey with 12 subtypes, each with 10 DCE tasks, was designed and completed by 2494 members of the UK general public. Results. Of the 3 manipulations in the self-reporting context, only b) splitting anxiety or depression had a significant effect. In the health state valuation context, b) splitting level 5 pain or discomfort (relative to pain) and splitting level 5 anxiety or depression (relative to anxiety) had significant effects as did c) bolting off dimensions. Conclusions. We find that the values given to certain health dimensions are sensitive to the way in which it is described and the other health dimensions presented. Of particular interest is the effect of splitting composite dimensions: a given EQ-5D(-5L) profile may mean different things depending on whether the profile is used to self-report one’s health or to value hypothetical states, so that the health state values of EQ-5D(-5L) in population tariffs may not correspond to the states that patients self-report themselves in.

scholarly journals Psychological distress and resilience in a sample of Adolescents and Young Adults with cancer during the COVID-19 pandemic

2021 ◽  
Author(s):  
Clare Jacobson ◽  
Rebecca Mulholland ◽  
Nicola Miller ◽  
Laura Baker ◽  
Daniel Glazer ◽  
...  
Keyword(s):  
Mental Health ◽  
Psychological Distress ◽  
Cancer Treatment ◽  
Online Survey ◽  
Protective Factor ◽  
Care Delivery ◽  
Self Report ◽  
Patient Health ◽  
The Uk ◽  
The Impact

AbstractBACKGROUNDAdolescents and young people (AYA) with cancer are at greater risk of psychological distress which can impact treatment. COVID-19 has resulted in changes to cancer care delivery and AYA have been disproportionately affected by economic and educational effects of COVID-19, potentially impacting on mental health. Understanding the impact of COVID-19 on AYA with cancer is important to inform care.METHODSOnline survey of 16-24 year olds receiving cancer treatment at 8 cancer centres in the UK in December 2020. We measured: self-perceived increased anxiety since COVID-19, impact of COVID-19 on treatment, life and relationships and used the 8-item Patient Health Questionnaire(PHQ-8), 7-item Generalised Anxiety Disorder Scale(GAD) and the 2-item Connor-Davidson Resilience Scale(CD-RISC).RESULTS112 AYA participated (17.8% of total eligible). 62.8% were female, 67.3% were 21-24 years. 83% were white. 59.8% had previously experienced mental health difficulties. 67.9% received cancer treatment during the pandemic and 33.9% were diagnosed during the pandemic. 78.6% reported COVID-19 having a significant impact on their life, 55.4% on their key relationship and 39.3% on their treatment. 79% reported experiencing some degree of increased anxiety since COVID-19.43.4% had moderate-severe PHQ-8 scores and 37.1% for GADS-7. Self-report of impact on life was associated with greater anxiety during COVID-19 and moderate-severe PHQ-8 score (OR 3.64, 95% CI 2.52 to 19.40, p <0.01; OR 5.23, 95%CI 1.65 to 16.56, p < 0.01). Impact on relationships was associated with greater anxiety and moderate-severe GADS-7and PHQ-8 score (OR 2.89, 95% CI 1.11 to 7.54, p = 0,03; OR 3.54, 95% CI 2.32 to 15.17, p<0.01; OR 2.42, 95% CI 1.11 to 5.25, p =0.03). Greater CD-RISC score was associated with lower risk of anxiety and mod-severe GADS-7and PHQ-8 scores (OR 0.58, 95%CI 0.41 to 0.81, p <0.01; OR 0.55 95% CI 0.4 to 0.72, p <0.01; OR 0.52, 95% CI 0.38 to 0.69, p <0.01)CONCLUSIONSWe found high levels of psychological distress in AYA with cancer, which is important knowledge for clinical teams working with this age group. Perceived impact of COVID-19 on relationships and life was predictive of poorer mental health, with resilience a potential protective factor.

scholarly journals Supporting Families with Children with Special Educational Needs and Disabilities During COVID-19

2020 ◽  
Author(s):  
Umar Toseeb ◽  
Kathryn Asbury ◽  
Aimee Code ◽  
Laura Fox ◽  
Emre Deniz
Keyword(s):  
Online Survey ◽  
Sudden Change ◽  
Educational Needs ◽  
Autism Spectrum ◽  
Autism Spectrum Conditions ◽  
Special Educational Needs ◽  
Social Distancing ◽  
Huge Impact ◽  
The Uk ◽  
Families With Children

The COVID-19 pandemic has had a huge impact on how people go about their day to day life. The sudden change, along with necessary measures such as self-isolation and social distancing has been particularly challenging for children with special educational needs and disabilities (SENDs) and their families, given their reliance on many on carefully established routines and relationships as well as professional and informal support. Three hundred and thirty nine parents of children with SENDs (the majority with Autism Spectrum Conditions) completed an online survey during the first two months of the social distancing in the UK (23rd March 2020 - 22nd May 2020). Parents provided detailed accounts of their family’s needs both to support their child during lockdown and to transition back to school. Many of these support needs during lockdown were either unique to families of children with SENDs or represented a more profound challenge than in most neurotypical families. There were considerable differences in satisfaction with support during COVID-19 suggesting wide variation in support provided to families of children with SENDs. The findings also suggest that educators and policy makers should place the implementation of clear routines and targeted mental health support at the centre of any strategy designed to support children with SENDs in making the transition back to school. The study provides preliminary insights into parental perspectives on support during the COVID-19 pandemic for families with children with SENDs.

Impact of training design on trainees' motivation: an empirical study

2021 ◽  
Vol ahead-of-print (ahead-of-print) ◽  
Author(s):  
Yasmin Yaqub ◽  
Arun Kumar Singh
Keyword(s):  
Human Resource Development ◽  
Online Survey ◽  
Critical Role ◽  
Skills Training ◽  
Practical Aspect ◽  
Self Report ◽  
Training Design ◽  
Identical Element ◽  
Content Type ◽  
The Impact

Purpose This study aims to advance understanding of the critical role of training variables (trainer performance, transfer design and an identical element) and motivation to improve work through learning (MTIWL) the least researched construct of motivation in human resource development (HRD). Design/methodology/approach A self-report online survey was conducted to collect responses from 280 managers working in different industries. Participants attended open skills training program organized by an in-house training institute in India. Findings The trainer performance and transfer design had a positive and significant impact on MTIWL. However, an identical element found no significant direct impact on MTIWL. Practical implications The trainer performance positively cultivates trainees’ MTIWL and training approaches according to trainees’ preferences improve MTIWL. The training content is needed to resemble with work assignment for enhancement of trainees MTIWL. Originality/value This study improved understanding of the impact of training variables on a comprehensive and practical aspect of trainees' motivation in HRD, MTIWL.

scholarly journals Genetic underpinnings of sociability in the UK Biobank

2019 ◽  
Author(s):  
J Bralten ◽  
CJHM Klemann ◽  
NR Mota ◽  
W De Witte ◽  
C Arango ◽  
...  
Keyword(s):  
Social Anxiety ◽  
Psychiatric Disorders ◽  
Genetic Correlation ◽  
Genome Wide Association Study ◽  
Autism Spectrum ◽  
Self Report ◽  
Uk Biobank ◽  
Genome Wide ◽  
A Genome ◽  
The Uk

ABSTRACTDifficulties with sociability include a tendency to avoid social contacts and activities, and to prefer being alone rather than being with others. While sociability is a continuously distributed trait in the population, decreased sociability represent a common early manifestation of multiple neuropsychiatric disorders such as Schizophrenia (SCZ), Bipolar Disorder (BP), Major Depressive Disorder (MDD), Autism Spectrum Disorders (ASDs), and Alzheimer’s disease (AD). We aimed to investigate the genetic underpinnings of sociability as a continuous trait in the general population. In this respect, we performed a genome-wide association study (GWAS) using a sociability score based on 4 social functioning-related self-report questions in the UK Biobank sample (n=342,461) to test the effect of individual genetic variants. This was followed by LD score analyses to investigate the genetic correlation with psychiatric disorders (SCZ, BP, MDD, ASDs) and a neurological disorder (AD) as well as related phenotypes (Loneliness and Social Anxiety). The phenotypic data indeed showed that the sociability score was decreased in individuals with ASD, (probable) MDD, BP and SCZ, but not in individuals with AD. Our GWAS showed 604 genome-wide significant SNPs, coming from 18 independent loci (SNP-based h2=0.06). Genetic correlation analyses showed significant correlations with SCZ (rg=0.15, p=9.8e-23), MDD (rg=0.68, p=6.6e-248) and ASDs (rg=0.27, p=4.5e-28), but no correlation with BP (rg=0.01, p=0.45) or AD (rg=0.04, p=0.55). Our sociability trait was also genetically correlated with Loneliness (rg=0.45, p=2.4e-8) and Social Anxiety (rg=0.48, p=0.002). Our study shows that there is a significant genetic component to variation in population levels of sociability, which is relevant to some psychiatric disorders (SCZ, MDD, ASDs), but not to BP and AD.

scholarly journals GPs’ confidence in caring for their patients on the autism spectrum: an online self-report study

2017 ◽  
Vol 67 (659) ◽  
pp. e445-e452 ◽  
Author(s):  
Silvana Unigwe ◽  
Carole Buckley ◽  
Laura Crane ◽  
Lorcan Kenny ◽  
Anna Remington ◽  
...  
Keyword(s):  
Self Efficacy ◽  
Autism Spectrum ◽  
Self Report ◽  
Specialist Service ◽  
Factors Affecting ◽  
Autistic People ◽  
Healthcare Experiences ◽  
The Uk ◽  
Open Question ◽  
Item Knowledge

BackgroundIn the UK, GPs play a key role in the identification and management of children, young people, and adults on the autism spectrum, but there is a paucity of research on GPs’ perceptions of working with these patients.AimTo understand GPs’ perceived self-efficacy in identifying and managing their patients on the autism spectrum, and the factors affecting this.Design and settingAn online self-report survey was developed for completion by GPs across the UK.MethodA total of 304 GPs in the UK took part. The survey collected responses on participants’ background, training, and experience, both as a GP and with regard to autism, and included a 22-item knowledge of autism questionnaire, a 14-item self-efficacy scale targeting GPs’ perceived confidence in identifying and managing their autistic patients, and an open question eliciting participants’ experiences of working with autistic people.ResultsIn total, 39.5% (n = 120) of GP participants reported never having received formal training in autism. Despite demonstrating good knowledge of its key features, participants reported limited confidence in their abilities to identify and manage autistic patients, with many citing a number of barriers that overwhelmingly focused on perceived failings of the current healthcare system (such as a lack of clarity around referral pathways).ConclusionThere is an urgent need for improved local specialist service provision alongside clearer referral pathways for diagnosis to improve both GPs’ confidence in caring for their autistic patients and the healthcare experiences of autistic patients and their families. Local clinical commissioning groups are best served to assist GPs in ensuring that they can reliably detect the condition and make appropriate provisions for support.

scholarly journals Apart but not Alone? A cross-sectional study of neighbour support in a major UK urban area during the COVID-19 lockdown

2020 ◽  
Vol 2 ◽  
pp. 37 ◽  
Author(s):  
Mat Jones ◽  
Amy Beardmore ◽  
Michele Biddle ◽  
Andy Gibson ◽  
Sanda Umar Ismail ◽  
...  
Keyword(s):  
Support Groups ◽  
Online Survey ◽  
Critical Role ◽  
Age Groups ◽  
Cross Sectional Study ◽  
Vulnerable Groups ◽  
Cross Sectional ◽  
Adult Age ◽  
Wide Range ◽  
The Uk

Background: Evidence from a range of major public health incidents shows that neighbour-based action can have a critical role in emergency response, assistance and recovery. However, there is little research to date on neighbour-based action during the 2020 coronavirus pandemic. This article reports on a survey of people engaged in supporting their neighbours in weeks three and four of the UK COVID-19 lockdown. Methods: Members of area-based and community of interest COVID-19 support groups in the Bristol conurbation were invited to complete an online survey. Of 1,255 people who clicked on the survey link, 862 responded; of these, 539 responses were eligible for analysis. Results: Respondents reported providing a wide range of support that went beyond health information, food and medical prescription assistance, to include raising morale through humour, creativity and acts of kindness and solidarity. A substantial proportion felt that they had become more involved in neighbourhood life following the lockdown and had an interest in becoming more involved in future. Neighbour support spanned all adult age groups, including older people categorised as being at-risk to the virus. With respect to most measures, there were no differences in the characteristics of support between respondents in areas of higher and lower deprivation. However, respondents from more deprived areas were more likely to state that they were involved in supporting certain vulnerable groups. Conclusions: As with previous research on major social upheavals, our findings suggest that responses to the viral pandemic and associated social restrictions may increase existing social and health inequalities, and further research should explore this issue in more depth.

scholarly journals Ocular Phenotype Associated with DYRK1A Variants

Genes ◽  
2021 ◽  
Vol 12 (2) ◽  
pp. 234
Author(s):  
Cécile Méjécase ◽  
Christopher M. Way ◽  
Nicholas Owen ◽  
Mariya Moosajee
Keyword(s):  
Intellectual Disability ◽  
System Development ◽  
International Association ◽  
Care Pathway ◽  
Autism Spectrum ◽  
Nervous System Development ◽  
Self Report ◽  
Dual Specificity ◽  
The Uk

Dual-specificity tyrosine phosphorylation-regulated kinase 1A or DYRK1A, contributes to central nervous system development in a dose-sensitive manner. Triallelic DYRK1A is implicated in the neuropathology of Down syndrome, whereas haploinsufficiency causes the rare DYRK1A-related intellectual disability syndrome (also known as mental retardation 7). It is characterised by intellectual disability, autism spectrum disorder and microcephaly with a typical facial gestalt. Preclinical studies elucidate a role for DYRK1A in eye development and case studies have reported associated ocular pathology. In this study families of the DYRK1A Syndrome International Association were asked to self-report any co-existing ocular abnormalities. Twenty-six patients responded but only 14 had molecular confirmation of a DYRK1A pathogenic variant. A further nineteen patients from the UK Genomics England 100,000 Genomes Project were identified and combined with 112 patients reported in the literature for further analysis. Ninety out of 145 patients (62.1%) with heterozygous DYRK1A variants revealed ocular features, these ranged from optic nerve hypoplasia (13%, 12/90), refractive error (35.6%, 32/90) and strabismus (21.1%, 19/90). Patients with DYRK1A variants should be referred to ophthalmology as part of their management care pathway to prevent amblyopia in children and reduce visual comorbidity, which may further impact on learning, behaviour, and quality of life.

scholarly journals THU0507 ASSOCIATION BETWEEN JUVENILE IDIOPATHIC ARTHRITIS AND AUTISM

2020 ◽  
Vol 79 (Suppl 1) ◽  
pp. 492.2-492
Author(s):  
R. Beesley
Keyword(s):  
Juvenile Idiopathic Arthritis ◽  
General Population ◽  
Online Survey ◽  
Monitoring Network ◽  
Autism Spectrum ◽  
Future Research ◽  
P Value ◽  
Degree Relative ◽  
Error Bar ◽  
The Uk

Background:Juvenile Idiopathic Arthritis (JIA) is a heterogenous group of autoimmune disorders characterised by chronic joint inflammation, diagnosed in around 1 in 1,000 children and young people (CYP) under the age of 16. Autistic Spectrum Condition (ASC) is a neurodevelopmental condition characterised by differences in social communication and sensory perception, as well as restricted interests and repetitive behaviours. Recent estimates from the Centers for Disease Control and Prevention (CDC) suggest that 1.68% of CYP are diagnosed with ASC, with males being more likely to be diagnosed (sex ratio of 4:1) [1]. The causes of both JIA and ASC are complex interactions between genetic and environmental factors. There appears to be some evidence that ASC may be associated with certain parental autoimmune conditions [2], although research into any association between JIA and ASC is sparse with the exception of a review of clinical database information [3].Objectives:In this parent-led study, the association between JIA and ASC was explored in order to determine if children with JIA, or children who do not themselves have JIA but have at least one first-degree relative with JIA (FDR), are more likely to be diagnosed with ASC.Methods:Parents of CYP with JIA were invited to complete an online survey, giving details of each member of their family including diagnosis status for JIA and ASC, and age of diagnoses. A total of 247 responses were collated, representing 558 CYP. Overall, 202 CYP were diagnosed with JIA from 197 families. The eldest child with JIA from each family was selected (total 197; 66 male and 131 female) and the rate of ASC was compared against the general population using Fisher’s exact tests.Results:Children with JIA themselves and FDR children were significantly more likely to be diagnosed with ASC.GroupOdds Ratio (95% CI)p-valueJIA children overall6.107 (1.760, 21.190)0.0020**FDR children overall7.009 (2.033, 24.160)0.0006***Figure 1.Proportion of children diagnosed with ASC in the general population (CDC estimates), JIA group and FDR group. Error bar indicates 95% CI. Significance indicated compared to population.Conclusion:Individuals with JIA and family members of individuals with JIA are more likely to be diagnosed with ASC. The results remained unchanged in a sensitivity analysis in which JIA children who had another sibling with JIA were excluded in order to minimise the risk that these results were affected by selecting the eldest child with JIA.It is possible that we are underestimating the association between JIA and ASC in this study. The majority of children sampled were from the United Kingdom and Ireland; however, we chose to utilise the most recent CDC estimates for ASC prevalence, as the most recent estimates from the UK were from 2006 and longitudinal data suggests that ASC prevalence continues to increase, likely due to changes in diagnostic criteria and improved recognition of the condition. When using the UK prevalence estimates, JIA children and FDR children remain significantly more likely to be diagnosed with ASC than the general population as a whole.Future research should focus on confirming these findings in larger, population-based samples.References:[1]Christensen DL, Braun KV, Baio J, et al. Prevalence and Characteristics of Autism Spectrum Disorder Among Children Aged 8 Years — Autism and Developmental Disabilities Monitoring Network, 11 Sites, United States, 2012.MMWR Surveill Summ(2018); 65 (No. SS-13):1–23.[2]Hughes, H. K., Mills Ko, E., Rose, D. & Ashwood, P. Immune Dysfunction and Autoimmunity as Pathological Mechanisms in Autism Spectrum Disorders.Frontiers in Cellular Neuroscience(2018); 12[3]Haslam, K. P16 Is there an association between paediatric rheumatological disease and autism?Rheumatology2019; 58Disclosure of Interests:None declared

scholarly journals Perceptions of Risk of Attending Hospital during the COVID-19 Pandemic: a UK patient and public survey and focus groups

2020 ◽  
Author(s):  
Rebecca Pritchard ◽  
Emer Brady ◽  
Yogini Chudasama ◽  
Professor Melanie Davies ◽  
Professor Gerry McCann
Keyword(s):  
Focus Groups ◽  
Online Survey ◽  
Public Involvement ◽  
Public Attitudes ◽  
Self Report ◽  
Online Surveys ◽  
Perceptions Of Risk ◽  
Global Pandemic ◽  
Public Survey ◽  
The Uk

Abstract We aim to rapidly assess public attitudes to attending hospital across the UK for research purposes and clinical appointments, and attitudes to vaccine research using an online survey and online focus groups. Online surveys offer a rapid and, during a global pandemic, safe way of collecting information about public opinion. However, they are flawed in relying on self-report, and subject to abuse by means of multiple responses from one person or even merely random responses. Sampling methods associated with online surveys require opt-in so respondents are likely to be motivated, and specifically interested in research. Thus the methodology will attract a 'warm' audience when discussing questions about research as is standard in public involvement.Online focus groups with public involvement volunteers will also experience similar issues with generalisability. All online methodologies will exclude those without access to the online world.

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