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Patients’ experiences of managing their rare rheumatic disease
Get PDFObjectivesThe rare autoimmune rheumatic diseases (RAIRDs) include systemic lupus erythematosus (lupus), systemic vasculitis, inflammatory myositis, systemic sclerosis, and Sjögren’s Disease. The objective of the study is to understand patients’ experiences of living with and managing their RAIRD.MethodsParticipants from the UK with a range of RAIRDs were recruited via social media including patient charity networks. Purposive sampling was used to include a range of participants with different conditions and demographic characteristics. A topic guide was developed with patient partners to guide discussions about health-related quality of life with RAIRDs, including support needs. Focus groups were conducted via online video conferencing, audio-recorded, transcribed, checked and anonymised. Data was analysed thematically by an academic psychologist and rheumatologist.ResultsTwenty-six patients with RAIRDs participated in six focus groups (between 3–6 people per focus group). The median age was 62 years (range 34–82), 21 (80%) were female, 21 (80%) had a diagnosis longer than the last two years. Five themes were identified: managing healthcare systems and health professionals; luck of the draw: variation in access and resources; trustworthy and reliable sources of support; support to live well: core care or an added extra; and dealing with the emotional fallout.ConclusionThis study found that patients shared experiences regardless of their specific RAIRD suggesting that a combined intervention could meet their common support needs. Further large-scale work is required, including people who may not usually take part in research, to explore the potential content and structure of such an intervention
Attitudes to brain health and dementia amongst the Chinese population living in the UK
No full textBackground: Just under half a million people who identify as Chinese or Chinese-British are living in the UK. Chinese migrants have a distinctive linguistic and cultural heritage and are likely to differ from the wider UK population in their attitudes to dementia care. However, to date no studies have explored this area. This study aimed to compare attitudes to dementia amongst Chinese people and the wider UK population using a translated version of the 2023 Dementia Attitudes Monitor survey (DAM). Methods: We translated the DAM into Simplified and Traditional Chinese and distributed this through an online survey. In total 84 UK based participants (65 women and 19 men) completed the survey. We weighted data by age and sex. Results: We identified important differences between Chinese participants and the wider UK population. Chinese participants were more likely to report that they would find it hard to talk to someone with dementia and that they would not feel comfortable telling people outside their close family if they were to be diagnosed. Higher levels of knowledge about dementia were associated with increased reluctance to tell people outside their family. Chinese participants were equally willing to take a test that could tell them whether they were in the early stages of dementia, even before symptoms showed. They were also more likely to report that they would want to know information in midlife about their risk of developing dementia later on. Conclusion: This paper is the first to report knowledge about brain functioning and dementia within the UK-based Chinese community. Chinese people are highly motivated to reduce their dementia risk – but to do so requires specific public health programmes that are adapted to meet the specific needs of Chinese communities
Assessing the effectiveness of multi-session online emotion recognition training in autistic adults
Get PDFDifficulties with emotion recognition can occur in neurodevelopmental conditions, including in autistic individuals. Providing interventions to support this would therefore be beneficial, particularly in terms of downstream effects on wellbeing, social relationships and education. In this online experimental study, we examined the effect of a recently developed facial emotion recognition training task versus a sham/control task in an adult population who self-identified as autistic over four sessions in a 2-week period, with a fifth follow-up session (N = 184). Our main analyses showed that facial emotion recognition accuracy was greater in Session 4 in the active group, with an estimated improvement of 14% (equivalent to approximately 7 additional correct responses), compared to 2% (equivalent to approximately 1 additional correct responses) in the sham group (p = 4x10-09). Additional analyses suggested training effects were generalisable to facial stimuli that participants had not been trained on and were still present, although attenuated, two weeks later. We also observed some self-reported improvements in social interactions post-training. Overall, this study demonstrated improved emotion recognition with this training task in an adult sample who self-identified as autistic. Future work is needed to investigate the effect of this task on emotion recognition accuracy in those with a formal diagnosis of autism, and in autistic children where support could be most beneficial
Building safety regulation - Written evidence submitted to House of Lords industry and regulators committee
No full textAs an academic and practitioner in civil engineering with a research focus on infrastructure safety and regulatory systems, I welcome the opportunity to contribute to this important inquiry. The establishment of the Building Safety Regulator (BSR) following the Building Safety Act 2022 is a critical reform aimed at improving building safety in England, particularly in the wake of the Grenfell Tower tragedy. This submission offers reflections on the effectiveness of the BSR, the challenges it faces, and potential areas for regulatory improvement
Comment on: Miedany et al. Beyond the symptoms: Personalizing giant cell arteritis care through multidimensional patient reported outcome measure
No full textComplex and bidirectional interplay between marital quality, catastrophizing, psychological dysfunction, and quality of life in married Malay women with disorder of gut-brain interactions
No full textDisorders of gut-brain interactions (DGBI) affect more women, and marital quality may have been a factor that explains clinical manifestations of DGBI-however, the mechanism is unclear. This study aimed to elucidate supported relationships between DGBI with marital quality and clinical attributes in married Malay women. This cross-sectional study involved married Malay women with functional dyspepsia (FD), irritable bowel syndrome (IBS), and FD-IBS overlap per Rome IV criteria. Multivariate analysis of variance (MANOVA) and Pearson correlation analysis were performed to determine the association between DGBI, marital quality, and clinical attributes of catastrophizing, psychological dysfunction, and quality of life. Path analysis models were developed, tested, and fitted to elucidate relationships that satisfied significance testing and fit indices (termed supported relationship). Of 1130 screened participants, 513 were analyzed. The prevalence of FD, IBS, and FD-IBS overlap was 33.9% (n = 174), 29.5% (n = 151), and 36.6% (n = 188), respectively. Of 17 variables in MANOVA, significant differences in variables were observed for FD vs. FD-IBS overlap (10), IBS versus FD (10), and IBS versus FD-IBS overlap (5). Pearson correlation matrices found significant correlations for 15 of 17 variables. After testing and fitting, the third path model (Model 3) was deemed the final model. Model 3 suggested that relationships between DGBI and marital and clinical attributes were complex and bidirectional. The number of supported relationships were 50, 43, and 39 for FD-IBS overlap, FD, and IBS, respectively. Relationships between DGBI, marital quality, and clinical attributes among married Malay women are complex and bidirectional. [Abstract copyright: © 2025 John Wiley & Sons Ltd.
Ink for Printmaking
No full textThe ultimate guide to printing inks and processes, from the pigment to the printmaker.Since printing's invention in the sixth century, inks have remained a fundamental aspect of the printing process. In this comprehensive and accessible guide, Stephen Hoskins and Michael Craine trace the development of ink from ancient China through the Middle Ages and from the industrial revolution to the digital age. As well as its history, they explore inks for different forms of printmaking, specialist inks, environmental issues and recent developments in health and safety for the printmaker.Offering detailed guidance to the inks used for processes from etching and relief printing to lithography and screen printing, as well as how to make your own from dry pigment, the book is beautifully illustrated with examples and offers practical information for all levels of printmakers, from the specialist to the amateur
Demystifying trauma in international relations theory: From incomprehensibility to the liberatory real
Get PDFRecent work on trauma and memory in international relations has sought to emphasize the key role trauma plays in state and community formation, security policies, the mediatization of atrocities, and transitional and social justice. This article problematizes the doxology of trauma in this body of work: the assumptions about the traumatic that go without saying because they come without saying in the discipline. We counter, in particular, international relations’ unreflective consumption of Cathy Caruth’s paradigm of trauma as an incomprehensible shock. In this article, we excavate the contours, origins, and effects of this doxology. We first use the examples of post-conflict struggles for truth and reconciliation and the COVID-19 pandemic to illustrate that international relations’ vision of trauma centralizes a psychiatric and medicalized paradigm of governance and management that depoliticizes suffering. We then seek to provide an alternative account of trauma woven in dialogue with the psychoanalytical reflections of Francophone and Lusophone scholars in the Black Radical Tradition, particularly Fanon, Mbembe, Kilomba, Nascimento and Gonzalez. The goal is to move from a theory of trauma-as-event to an understanding of (colonial/racial) trauma as it appears in the writings of those who never felt protected or at peace in the white colonial order
‘Constant pressures from all angles’: Understanding the mental health of UK police officers
Get PDFPolicing in the United Kingdom can be challenging. The organisational (i.e., within the police force) and operational (i.e., when working in the field) stressors that police officers encounter can negatively impact their mental health. To investigate this 54 currently serving police officers completed an online survey. Most participants typically felt organisational and operational pressures led to a decline in their mental health, regardless of their years in service. This means that participants in their first year and those with over 25 years in service typically reported similar work-related stressors. This paper provides a qualitative overview of work-related stressors
‘I’m coming out’: The role of music in LGBTQ+ identities
No full textResearch shows that music holds great importance to the LGBTQ+ community. However, only a handful of studies have explored personal and private music consumption and particularly its role in individual identity formation and the coming out process – typically, with a focus on gay men and lesbians. This experiential qualitative study explored the role of music in LGBTQ+ identities before, during, and after the coming out process. Data were collected from 30 participants who identified as LGBTQ+ and/or in the process of coming out using an online qualitative survey; four of these participants also took part in follow-up interviews. Data were analysed using reflexive thematic analysis, generating three themes: 1) Music to come out to; 2) Queer artists promoting individual authenticity, pride, and empowerment; and 3) Queer music for community and belonging. The findings can inform the work of music therapists, music educators, and community musicians working with LGBTQ+ individuals and communities