Social psychological research has shown how far-right leaders mobilize people by claiming that majority populations are threatened or silenced. This paper builds on this work to examine a related process in naturalistic interactions: how riotous actions are explained and justified through appeals to 'British values' in online forums. Using discursive psychology, we analyse talk surrounding the riots that followed the stabbing of three young girls in Southport, England-the UK race riots of August 2024. We show that invoking British or English values serves two key functions: it renders rioters' actions self-explanatory and offers a competing account of rioters as the more authentic representation of Britishness and the British people than the government. This reframing of 'British values' offers up a challenge to those attributing riots to 'far right' motivations and instead portrays the riots as effortful and even ideal expressions of British citizenship. Thus, British values operate not merely as symbols but as rhetorical tools that can sanitize the 'far-right' label linking the riots, immigration, state policy and national identity.
Bisphenols are emerging organic contaminants often released into the environment, especially in aquatic systems. Specifically, Bisphenol A (BPA) is generally used in synthetic polymers and thermal paper production, and has been found in different environments and organisms, affecting ecosystems and human life. However, bisphenol contamination in karst systems remains poorly studied, although karst groundwaters are widely exploited for drinking use. This study presents a preliminary screening of BPA, bisphenol AP (BPAP) and C (BPC) in a karst system, from surface watercourses to cave groundwaters, using the novel AptaStick system for bisphenol family. Results confirmed BPA pollution in the karst system, with highest values inside a cave. BPAP and BPC were not detected in water samples. Potential pollution sources are likely linked to diffuse anthropogenic inputs within the catchment area, combined with event-driven transport dynamics. As a potential source of BPA contamination, microplastic (MP) pollution was concurrently investigated during high-flow conditions, finding from 0 to 7.7. MPs/L. These data expand previous assessments conducted under low-flow conditions in the same karst system. Natural and regenerated microfibres (MFs) were analyzed too, finding from 0 to 136 items/L. This work wants to be a first evaluation of both bisphenol and MP pollution in karst systems, stressing the importance of monitoring pollutants in these highly vulnerable environments. Moreover, it provides a first evaluations of how pollutant distribution may vary within the different hydrological compartments of a karst system, not only between surface and groundwater environments, but also among flowing, percolation, and stagnant waters within the subterranean network. This approach contributes to a better understanding of the spatial heterogeneity and transport dynamics of emerging contaminants in karst environments, supporting the development of appropriate conservation measures for habitats and species protection, and suitable drinking water resources management.
This paper details the design and development of a discipline-specific English for Academic Purposes (EAP) syllabus for undergraduate students majoring in architecture and design related disciplines in an art school in China. Guided by the comprehensive needs analysis model established by Dudley-Evans and St. John [Developments in English for specific purposes: a multi-disciplinary approach. Cambridge University Press (1998)] and Swales [Genre analysis: English in academic and research settings. Cambridge University Press (1990)] genre theory, this study employed a university-wide questionnaire to gather data from 650 participants, including students and faculty. The needs analysis identified a critical disparity between students' target academic aspirations-such as engaging in international collaboration, pursuing studies abroad, and understanding foreign lectures-and their present situational capabilities, particularly in listening comprehension and command of disciplinary vocabulary. In response to these findings, the proposed "Architectural Art English" syllabus is constructed around a genre-based, content and language integrated learning (CLIL) as well as task-based language teaching (TBLT) approach. It systematically incorporates seven key academic and professional genres relevant to the field: textbooks and monographs, research papers, case studies, and lecture scripts as input genres; and design statements, presentation scripts, and research abstracts as output genres. Each instructional unit is organized around a central architectural theme, utilizing authentic cases and genre analysis of move structures to make disciplinary discourse conventions explicit. The pedagogical framework emphasizes task-based learning, featuring authentic activities such as case analysis, design project presentations, and paper abstract writing to bridge the gap between language skills and disciplinary knowledge. This syllabus aims to addresses the complex interaction of learners' target needs, subjective wants, and current proficiencies, facilitating their active participation in the global academic community of architecture and design.
During early vocabulary growth, infants use single words to express complete ideas. Requests ("milk") and protests ("no!") are fundamental ways that infants communicate their needs. However, understanding what an infant wants from a single word can be challenging. Caregivers likely rely on infants' gestures and actions to interpret single-word utterances. How common are requests and protests during everyday activities? To what extent do infants accompany their requests and protests with gestures (e.g., points to request) and/or actions (e.g., flailing arms to protest)? Are caregivers more likely to respond to such "multimodal" requests and protests than to infants' words alone (i.e., unimodal speech)? We observed 31 toddlers (12-24 months) with their mothers during everyday interactions at home. In aggregate, infants expressed 2580 single-word utterances, with nearly half being requests (35%) or protests (8%). Most requests and protests (84%) were multimodal, occurring in the context of actions (mostly) or gestures. Unexpectedly, although infants' gestures/actions often "aligned" with their words in meaning or intent (e.g., saying "no" while pushing a toy away), infants also displayed "misaligned" gestures/actions (e.g., saying "no" to one toy while reaching for another). In particular, infants' aligned' multimodal requests and protests were more likely to elicit a response from mothers than were their words alone. Findings underscore the embodied and embedded nature of early communication in the natural home setting: Infants express their intentions by coupling words with gestures/actions, and certain types of multimodal communications are more effective than others in fulfilling their goals.
Autistic children often show reduced theory of mind (ToM). However, existing ToM measures neither sufficiently distinguish ToM ability from performance nor interpret both scores effectively, limiting their interpretability and clinical utility. To resolve these limitations, we characterized the measurement-based functioning levels and correspondence between ToM ability and performance among preschool to school-aged children. Data from 288 autistic and 168 neurotypical children were analyzed using a multidimensional Rasch model. The functioning levels and correspondence were established using expected responses across statistically distinguishable ToM levels. The results revealed three levels of ToM ability-Early (failure on all items), Basic (success on desire-based emotion), and Advanced (success on all items)-and five levels of ToM performance: Pre-ToM (understanding needs and wants), Emerging (simple emotion recognition), Transition (first-order false belief), Premature (contextual understanding), and Mature (pragmatic understanding). Importantly, while ToM performance tended to improve with ToM ability, only 20% of the items were comparable with neurotypical children. In conclusion, our findings highlight a critical gap in autistic children and provide the first empirically derived functioning framework linking ToM ability and performance. Beyond theoretical contribution, this study offers a practical pathway toward valid assessments and tailored interventions that target children's specific social-cognitive needs. Autistic children often face challenges in everyday social situations, which are partially related to reduced theory of mind (ToM). Most existing ToM measures either focus on performance in structured tasks (ToM ability) or real‐life behaviors (ToM performance). However, they rarely explain how these two aspects are related or which scores can be attributed to basic or advanced levels. In this study, we analyzed data from autistic and neurotypical children within the preschooler to school‐aged period to define three levels of ToM ability, five levels of ToM performance, and how these levels correspond. We found that many autistic children can pass ToM tasks, but only a small proportion of everyday ToM behaviors can reach levels similar to those of their neurotypical peers. This framework can help clinicians and researchers to collectively interpret ToM ability and performance scores and to optimize individual goals based on their strengths and weaknesses.
Access to mental health information is shifting from static search to conversational AI. Guided by patient-centered communication (PCC), two preregistered U.S. studies identified preferred communication features for interactions with AI chatbots about mental health and how individuals trade them off within feature bundles. Study 1 (N = 414, US quota sample) used a Best-Worst Scaling (BWS) to identify the six most relevant PCC-aligned features for healthcare providers. Study 2 analyzed an AI chatbot subsample (n = 268) drawn from a U.S. quota-representative sample in a Discrete Choice Experiment (DCE) to quantify trade-offs between combinations of these preferred features. Across both studies, users strongly wanted two communication features simultaneously in AI mental-health chatbots: reflective listening and multi-symptom assessment. Importantly, relational and clinical PCC-aligned features are most highly valued in interactions with AI mental-health chatbots. These preferences remained largely consistent across users and their preferences for communication accommodation.
Health guidelines are important resources for informing decisions made by health practitioners, patients, caregivers, policymakers, and other interest-holders. Interest-holder engagement in health guideline development can improve the relevance of recommendations, promote considerations of equity, and support implementation. To facilitate efficient and effective health guideline development, there is a need for a comprehensive, global, evidence-based guidance for interest-holder engagement in guideline development. This paper synthesises the barriers and facilitators to interest-holder engagement in guideline development. Several systematic reviews have examined the topic of interest-holder engagement in guideline development, but few have explicitly focused on barriers and facilitators to engagement and the majority of these were related to patients. With increased recognition of the value of broad interest-holder engagement, understanding the barriers and facilitators to interest-holder engagement is key to developing a relevant and inclusive health guideline. The objective of this review is to identify and synthesise the reported evidence on barriers and facilitators to interest-holder engagement in health guideline development. We address this objective through two research questions: 1. What are the reported barriers to interest-holder engagement in health guideline development across the 18 topics of the GIN-McMaster checklist? 2. What are the reported facilitators to interest-holder engagement in health guideline development across the 18 topics of the GIN-McMaster checklist? We searched five major electronic databases (MEDLINE (OVID), Cumulative Index to Nursing & Allied Health Literature (CINAHL; EBSCO), EMBASE (OVID), PsycInfo (OVID), Scopus, and Sociological Abstracts. We also conducted an extensive grey literature search using the websites of agencies who actively engage interest-holders in research and/or guideline-producing agencies, such as PCORI, WHO and GIN. We searched from database inception up to the 26th September, 2022. Backward and forward citation tracking was performed on included articles to identify other eligible studies. We included primary research studies which qualitatively reported on the barriers or facilitators to interest-holder engagement in health guideline development. This included qualitative or mixed method research studies using methods such as interviews, focus groups, or surveys to collect participant experiences; case studies of existing programmes; and process evaluation studies. We excluded non-empirical publications including commentaries and editorials. We excluded publications with incomplete data, including conference abstracts and protocols. We defined interest-holders as "any individual or group who is responsible for or affected by health- and healthcare-related decisions". We identified 10 types of interest-holders whose input can enhance the relevance and uptake of guidelines. We included studies that reported on the barriers or facilitators to engagement of one or several of these interest-holder groups at any step of the guideline development process. All identified citations from electronic databases were imported into Covidence for screening and selection. Documents identified through our grey literature search were managed and screened using an Excel spreadsheet. A two-part study selection process was used for all identified citations: (1) a title and abstract review and (2) full-text review. At each stage, teams of two review authors independently assessed all potential studies in duplicate using a priori inclusion and exclusion criteria. Data was extracted from each included article in duplicate and independently. We extracted information about study characteristics and methods. Additionally, we extracted qualitatively reported barriers and facilitators and conducted a framework analysis. We selected the Theoretical Domains Framework (TDF) for extracting our barriers and facilitator findings. Developed through a multidisciplinary consensus approach and subsequent validation, TDF consolidates overlapping behavioural theories into 14 domains encompassing 84 theoretical constructs, and provides a theoretical lens through which to view the cognitive, affective, social and environmental influences on behaviour and implementation. Two review authors conducted the analysis. Our qualitative evidence synthesis identified a total of 51 findings, encompassing 23 barriers and 28 facilitators to interest-holder engagement in health guideline development. While the large majority of reported evidence is about patient engagement, many findings are applicable to all interest-holder groups and should be considered by guideline developers who aim to apply a multi-interest-holder engagement approach. Many organisations that produce guidelines lack the resources to support interest-holder engagement. By implementing an organisational interest-holder engagement model, guideline developers can ensure that they have the necessary human and financial resources in place. The interest-holders which are recruited to a guideline project should be knowledgeable and experienced, and guideline developers should consider diverse perspectives, roles, and personal characteristics. Using a network approach for identification and recruitment can help identify appropriate and committed interest-holders. To prevent tokenistic engagement, guideline developers can promote the meaningful engagement of interest-holders by providing practical, technical and emotional support. This includes providing training to empower interest-holders and improve self-efficacy and confidence in guideline development skills. Training should focus on evidence-based methods such as systematic reviews and evidence-to-decision frameworks. Engagement throughout all stages of guideline development supports more meaningful engagement compared to occasional involvement. A skilled moderator/chair can manage group dynamics and support the contributions of all those involved in guideline development. They can also offer explanations and promote plain language as-needed. Finally, many interest-holders have limited time to contribute to guidelines, and developers should establish flexible processes and timelines, and consider interest-holders preferences for in-person and online engagement activities. Identifying and analysing barriers and facilitators to interest-holder engagement is important in order to optimise health guideline development. Knowing facilitators to engagement can support future interest-holder engagement work. More research is needed on the barriers that do not have potential facilitator solutions, to understand how to improve upon known challenges. This review calls for the development of training courses and tools to support and facilitate involvement of all interest-holders, both public and professionals. In addition, it calls for further research to be done with a focus on the dynamics of guideline development, perceived interactions within the group and their impact on decisions. Work should also be done to look at the implementation of guidelines and the influence of interest-holder engagement on uptake. What challenges do patients and other interest-holders face when creating health guidelines, and how can we support them? The review in brief: Health guidelines help many people, such as clinicians and patients, make decisions about healthcare. It is necessary to involve different types of people in the creation of health guidelines. This review summarises the challenges that people face when working together to create health guidelines and what kind of support helps them work together. Most of what we know about the experience of partnership when developing health guidelines is from patients. The main challenges facing patients are unclear roles, need for training and support, difficulty speaking up, and not having enough time to do the work. To support them, guideline developers should offer practical, technical and emotional support and work with flexible timelines and processes. More research is needed to understand the challenges faced by policymakers, practitioners, researchers and patients from different backgrounds and experiences. What challenges do patients and other interest-holders face when creating health guidelines, and how can we support them? Health guidelines are important documents that can help people, such as practitioners and patients, make decisions about healthcare. It is becoming more common to involve different types of people in the creation of health guidelines. We wanted to know what challenges people face when working together to create health guidelines, and what types of supports are useful. What did we do? We looked for literature that described people’s experiences when collaborating to create health guidelines. We specifically looked for information that described challenges they faced, how they overcame these challenges, and what type of supports they wished were in place. We were interested in documents that described ten different types of people who can contribute to the guideline development process, including patients, practitioners, and members of the public. We organised our results using a pre-existing checklist (GIN-McMaster Checklist for Guideline Development). What did we find? We found 40 documents that described challenges and ways to support people who are engaged in the guideline development process. Most of the evidence came from high-income countries and most of it was about patients and their experience being part of guideline development. These documents described how finding the right people to include in a guideline project can be challenging, since they need specific skills and knowledge or experience. People described not always understanding their role in the project, and needing more training and support in order to do their work. Organisations that develop guidelines did not always have the resources needed to support them. An important resource is the guideline chair, who leads the group discussions and can support everyone involved in creating the health guideline. The best way to support people is to provide them with choices and flexibility in how they engage in the guideline development process. People may prefer working in-person or online and need enough time to get the work done. What are the limitations of the evidence? Most of the evidence we found is about patients, and more research is needed about different interest-holders such as policy makers, health practitioners, and researchers. More information is also needed about how to involve people from diverse backgrounds, such as those who live in low-income settings. Additionally, we did not find evidence for all of the steps needed to create a guideline, such as priority setting. How up-to-date is this evidence? Evidence was included up to September 26, 2022.
Contraceptive use among unhoused pregnancy-capable individuals remains understudied. This study examines contraceptive use, barriers, and preferences among these individuals. A 19-question survey was administered to 52 unhoused pregnancy-capable individuals in Phoenix, Arizona, assessing contraceptive use, access, and preferences for future contraceptive care and education. Overall, 60% reported contraceptive use. While 67% wanted to avoid pregnancy, 10% desired it. The most used methods were barrier contraception (52%), abstinence (25%), and surgical sterilization (19%). Six percent used an intrauterine device (IUD); none used etonogestrel implants. Transportation (29%) and cost (25%) were the primary barriers to access. Participants preferred accessing contraception (63%) and receiving education (42%) from health care providers rather than street medicine teams or volunteers. Unhoused individuals reported different contraceptive patterns from the general population and preferred licensed providers for contraceptive care. Transportation and cost were the primary barriers to accessing care.
Domestic violence in Anantnag, Jammu and Kashmir, driven by cultural norms and patriarchy, severely impacts women's well-being. This study explores survivor's experiences, help-seeking barriers, and suggests interventions. Semi-structured interviews with 16 Anantnag women were analyzed thematically. Analysis revealed five themes: fear, isolation, financial dependence, emotional abuse, and health impacts, with barriers including stigma, economic constraints, and limited awareness of support systems. Findings emphasize culturally sensitive support, policy reforms, and community efforts to empower survivors and address systemic issues. By prioritizing survivor voices and systemic change, the study informs strategies to mitigate domestic violence and foster resilience in marginalized communities.
Emotion regulation is initiated when a goal to influence emotions is activated. The goals people pursue when regulating their emotions, however, may differ across cultures. We tested whether individuals from the United States and Japan differ in the goals they pursue in emotion regulation in daily life. In a preregistered ecological momentary assessments study (N = 221), we examined how Americans and Japanese students felt and how they wanted to influence their feelings in daily life. As predicted, Americans were more motivated to decrease their unpleasant emotions and increase their pleasant emotions than Japanese were, even when controlling for differences in experienced emotions. These effects replicated across arousal levels, though their strength varied. The findings demonstrate that the degree to which people want to make themselves feel better when regulating their emotions in daily life varies across cultures. The online version contains supplementary material available at 10.1007/s42761-026-00358-9.
The global demographic shift has highlighted the co-occurrence of hypertension (HTN) and physical frailty, both of which severely impact the health outcomes and quality of life of middle-aged and older adults. This relationship remains underexplored in India's rapidly aging population. We conducted a cross-sectional analysis using data from Longitudinal Aging Study in India (Wave 1), comprising a nationally representative sample of 66,606 participants. Physical frailty was assessed using a modified Fried phenotype. Multivariable logistic regression and the Karlson-Holm-Breen method were utilised to evaluate associations and quantify the mediating effect of additional comorbidities. The weighted prevalence of physical frailty among participants with HTN was 19.26% (95% CI: 18.43, 20.11). Multivariable analysis revealed that advanced age, lack of education, non-working status, underweight BMI, and presence of additional comorbidities were significantly associated with higher odds of frailty in HTN patients. Mediation analysis showed that additional comorbidities accounted for 21.31% of the total effect of HTN on frailty for all HTN cases, and 38.36% for previously diagnosed cases. Treating HTN in isolation might be insufficient for addressing functional decline. Healthcare policies and clinical practices must adopt comprehensive geriatric assessments that target patients' entire comorbid profiles, while prioritising interventions that address the modifiable risk factors. As the world’s population ages, managing conditions like high blood pressure (hypertension) and physical frailty (weakness and fatigue) is a major health challenge. We wanted to understand how these two conditions are linked in middle-aged and older adults living in India.We conducted data analysis of 66,606 adults who were aged 45 and above from a large national survey titled as Longitudinal Ageing Study in India. We looked at people with hypertension and checked how many of them were also physically frail.We discovered that nearly one in five middle-aged and older adults with hypertension were physically frail. People were more likely to be frail if they were aged over 75, had no formal education, were not working, were underweight, or had other health conditions.Upon advanced analysis, we observed that having other diseases alongside hypertension strongly overlapped with the presence of physical frailty.Managing hypertension on its own may not be enough to support middle-aged and older adults who face frailty. Doctors and healthcare policies need to look at the patient’s overall health, including all their other medical conditions. By focusing on improving nutrition, education, and overall disease management, we can better support middle-aged and older adults experiencing frailty.
Climate change is threatening crop yield of a broad range of agricultural species, impacting global food security and trade. Crop wild relatives may contain climate adaptations that can be quickly introduced into cultivars, especially in perennial tree crops that use rootstock. Identifying climate resilient genotypes that can potentially be used as alternative rootstock is imperative to mitigate the impacts of climate change. Here, we used whole genome sequence data of 59 wild Juglans hindsii (Northern California black walnut) and 39 wild J. californica (Southern California black walnut) adult trees to: (i) determine predicted adaptedness to future climate based on landscape genomic models, (ii) explore their adaptedness if used as rootstock in existing walnut orchards and (iii) identify potential future planting sites within existing croplands. Wild J. hindsii has the highest predicted adaptedness to the future climate of Northern and Central California walnut orchards, while wild J. californica has the highest predicted adaptedness to Southern and Central California walnut orchards. Juglans californica has high adaptedness to the future climate of more existing cropland than J. hindsii does. If walnut farmers wanted to test new rootstock sources for their existing orchards or convert their farmland into walnut orchards, this study informs the exploration of such ideas. We illustrate how landscape genomic tools can be utilized in agricultural contexts as first steps in identifying climate adapted genotypes.
Background: Bereaved parents face substantial mental health risks. In addition to seeking help from mental health professionals, bereaved parents often adopt their own grief coping strategies. Among these, some Chinese parents who have lost their only child (shidu parents) adopt a unique, culturally shaped coping strategy known as 'living on behalf of the child.'Methods: A purposive sampling method was used in this study to invite shidu parents who were living on behalf of the child to participate in interviews. In total, 10 interviewees were included in the analysis; specifically, 8 participated by telephone, and 2 participated face-to-face. A thematic analysis was performed to code the data and extract themes.Results: For China's shidu parents, living on behalf of the child refers to doing what the child was doing when the child was still alive, doing things that the child wanted to do but had not been able to do, fulfilling the child's unmet responsibilities, maintaining relationships with the child's friends, and experiencing life from the child's perspective. This approach supports shidu parents by helping them regain a sense of purpose in life, improve their emotional stability, and increase their level of interpersonal support; however, it may also increase their level of life stress.Conclusion: As a culturally unique grief coping strategy, living on behalf of the child is practiced among shidu parents as they adjust part of their identity from being parents to being children. This strategy facilitates meaning reconstruction among shidu parents. The effects of this strategy on shidu parents are mainly positive. However, some negative effects can also occur, which makes finding an appropriate balance necessary. Living on behalf of the child is a unique grief coping strategy used by shidu parents in the Chinese cultural context.Living on behalf of the child facilitates meaning reconstruction among shidu parents.When shidu parents practice living on behalf of the child, part of their identity shifts from being parents to being children.The effects of living on behalf of the child on shidu parents are mainly positive, although negative effects can also occur. Antecedentes: Los padres en duelo enfrentan riesgos sustanciales para su salud mental. Además de buscar ayuda de profesionales de la salud mental, los padres en duelo suelen adoptar sus propias estrategias de afrontamiento. Entre estas, algunos padres chinos que han perdido a su único hijo (padres shidu) adoptan una estrategia de afrontamiento única y moldeada culturalmente, conocida como ‘vivir en representación del hijo/a’. Métodos: En este estudio se utilizó un método de muestreo intencional para invitar a participar en entrevistas a padres shidu que estuvieran viviendo en representación de su hijo/a. En total, se incluyeron 10 entrevistados en el análisis; específicamente, 8 participaron vía telefónica y 2 de forma presencial. Se realizó un análisis temático para codificar los datos y extraer los temas principales. Resultados: Para los padres shidu de China, vivir en representación del hijo se refiere a: realizar las actividades que el hijo hacía cuando aún vivía, llevar a cabo aquello que el/la hijo/a deseaba, pero no pudo cumplir, asumir las responsabilidades pendientes del hijo, mantener relaciones con los amigos del fallecido y experimentar la vida desde la perspectiva del hijo/a. Este enfoque sostiene a los padres shidu ayudándoles a recuperar el sentido de propósito en la vida, mejorar su estabilidad emocional y aumentar su nivel de apoyo interpersonal; no obstante, también puede incrementar sus niveles de estrés vital. Conclusión: Como estrategia de afrontamiento del duelo culturalmente única, el vivir en representación del hijo/a es practicado por los padres shidu mientras ajustan parte de su identidad, pasando del rol de padres al de hijos. Esta estrategia facilita la reconstrucción del significado entre los padres shidu. Los efectos de esta estrategia son mayoritariamente positivos. Sin embargo, también pueden presentarse efectos negativos, lo que hace necesario encontrar un equilibrio adecuado.
Severe combined immunodeficiency is an inherited condition arising from mutations in at least 19 known genes. Severe combined immunodeficiency can be identified through screening, family history or clinical presentation. Severe combined immunodeficiency is usually asymptomatic at birth and presents, in infancy, as recurrent and frequently severe infections. Without treatment, severe combined immunodeficiency is usually fatal in the first year of life. To summarise the available evidence relevant to newborn screening for severe combined immunodeficiency in the UK NHS newborn blood spot screening programme. Three research questions, concerning the accuracy of screening tests, the efficacy of early treatment and the acceptability of screening, were developed to address this objective. Eleven bibliographic databases were searched for relevant studies from 2011 to April 2024. Separate inclusion criteria were specified for each research question. Study selection, data extraction and assessment of methodological quality followed standard systematic review methods. A narrative synthesis of results is presented, structured by research question. No meta-analyses were conducted. Most positive predictive values, calculated from reports of newborn blood spot screening programme experience, were between 3.6% and 26%. Screening algorithms incorporating repeat sampling in preterm babies appeared to reduce false positives due to prematurity. However, the large number of other conditions that can give rise to a positive screening result mean that the positive predictive value for severe combined immunodeficiency remains consistently poor. Two small studies reported that early diagnosis of severe combined immunodeficiency, via newborn blood spot screening or family history and following the introduction of newborn blood spot screening, respectively, was associated with non-statistically significant improvements in post-transplant survival. A third study analysed data on n = 902 United States patients with severe combined immunodeficiency collected over a 28-year period and reported the results of multivariable Cox regression analyses, adjusted for demographic disease-related and transplant-related variables found to be significant on univariate analysis, showing that diagnosis of severe combined immunodeficiency via newborn blood spot screening significantly improved survival compared to diagnosis via clinical presentation. Qualitative data from the publications included in this evidence summary were generally indicative of parental support for newborn blood spot screening for severe combined immunodeficiency, but was mainly derived from parents of healthy newborns. The systematic review component of this evidence summary was limited by a restriction to full publications in the English language. The current published evidence base alone is not adequate to fully support implementation of newborn blood spot screening for severe combined immunodeficiency. With respect to UK National Screening Committee population screening criteria, criterion 4 was partially met and there was insufficient evidence to adequately assess whether criterion 6 was met. The findings of this evidence summary should be considered alongside findings from the recent in-service evaluation of newborn screening for severe combined immunodeficiency conducted in the NHS in England and the results of cost-effectiveness modelling. Further work is needed to inform policy on how the identification of non-severe combined immunodeficiency T-cell lymphopenia conditions by screening should be treated. Stakeholder dialogue and patient and public involvement activities may be helpful. In particular, the views of parents who have lived experience of a non-severe combined immunodeficiency (incidental) finding from newborn blood spot screening for severe combined immunodeficiency should be sought. This study is registered as PROSPERO CRD42024544200. This award was funded by the National Institute for Health and Care Research (NIHR) Evidence Synthesis programme (NIHR award ref: NIHR168307) and is published in full in Health Technology Assessment; Vol. 30, No. 45. See the NIHR Funding and Awards website for further award information. The UK National Screening Committee wants to know if screening all newborn babies for severe combined immunodeficiency would help babies and their families. Severe combined immunodeficiency is a rare, inherited condition that results in low numbers of white blood cells and prevents the body from fighting infection properly. There are usually no symptoms of severe combined immunodeficiency when an affected baby is born; however, a diagnosis of severe combined immunodeficiency is considered an emergency because the condition usually results in death in the first year, unless the child receives treatment. There is a test that can be used to screen for severe combined immunodeficiency; however, it is important to note that this test also identifies a large number of other conditions that affect the immune system. The UK National Screening Committee does not currently recommend screening newborn babies for severe combined immunodeficiency. This evidence summary was commissioned by the UK National Screening Committee as part of its regular, scheduled reviews of existing recommendations. There is evidence that babies with severe combined immunodeficiency who are diagnosed early, through screening, do better after treatment than those who are not diagnosed until they develop symptoms. However, most babies who have a screening test suggesting severe combined immunodeficiency do not actually have severe combined immunodeficiency. There is some evidence that parents support newborn screening for severe combined immunodeficiency; however, most of this evidence comes from parents of healthy newborns. There is a lack of information about the views of parents whose babies had a screening test suggesting severe combined immunodeficiency but did not have severe combined immunodeficiency. The evidence is not currently good enough to fully support implementation of newborn blood spot screening for severe combined immunodeficiency. The findings from the recent in-service evaluation of newborn screening for severe combined immunodeficiency conducted in the NHS in England should be considered with the findings from this evidence summary.
Patient-reported outcome measures (PROMs) are important tools for assessing the impact of skin diseases on health-related quality of life (HRQoL). However, comparative data on the measurement properties of commonly used instruments are limited. The objective of this study was to compare the measurement properties of the Dermatology Life Quality Index (DLQI), DLQI-Relevant (DLQI-R), and Skindex-29 in a cohort of patients with chronic skin disease. Participants completed the DLQI, Skindex-29, and Patient-Reported Outcomes Measurement Information System (PROMIS) measures at baseline and 3 months. Structural validity was assessed with confirmatory factor analysis; internal consistency with Cronbach's alpha; construct validity via known-groups comparisons and PROMIS correlations; informativity with Shannon's index; and responsiveness with standardized response means, Cohen's d, and change score correlations. Of 549 participants (mean age 37.8 years; 52.3% female), 406 (74.0%) completed follow-up. All instruments demonstrated high internal consistency (α ≥ 0.85) and no floor or ceiling effects. Skindex-29 domains demonstrated stronger structural validity and informativity compared to DLQI and DLQI-R. Construct validity was supported by expected associations with patient global assessment (PtGA) and PROMIS correlations. The DLQI, DLQI-R, and Skindex Symptoms and Emotions showed moderate responsiveness. The DLQI, DLRI-R and Skindex-29 demonstrated strong measurement properties in a heterogeneous cohort of individuals with chronic skin disease. Skindex-29 showed stronger structural validity and informativity, while the DLQI and DLQI-R demonstrated slightly greater responsiveness. Selection of PROM should depend on the intended clinical or research purpose. Chronic skin conditions, such as acne, eczema, psoriasis, and hidradenitis suppurativa, can affect many areas of daily life, including symptoms, emotional wellbeing, and social interactions. Physicians and researchers often use questionnaires, called patient-reported outcome measures, to better understand this impact from the patient’s perspective. Two of the most widely used in dermatology are the Dermatology Life Quality Index (DLQI), and the Skindex-29. A newer scoring approach to the DLQI, known as the DLQI-Relevant (DLQI-R), was developed to improve accuracy by adjusting how responses are scored when patients indicate that certain questions do not apply to them. In this study, we wanted to understand which of these questionnaires works best in people living with chronic skin conditions. We surveyed over 500 adults in the United States who reported having one or more skin condition. The participants completed the DLQI and the Skindex-29 at the start of the study, and again 3 months later. We found that the Skindex-29 provided a broader and more detailed picture of how skin conditions affect health-related quality of life. The DLQI and DLQI-R, on the other hand, were slightly better at detecting changes in health-related quality of life over time, although the differences between the questionnaires were small. These results show that no single instrument is best for all situations. The choice of questionnaire should depend on the purpose—whether the goal is to capture the full burden of disease, or to measure how much a patient improves with treatment.
Co-creation means engaging learners in working collaboratively to make decisions about course planning, implementation, or student assessment. Involving students in these decisions potentially enhances learning. When co-creation is part of assessment, it may reach more learners but may also pose pragmatic challenges. In this review, we focused on co-creation of assessment that may occur at any time during a health professional course. Systematic examination of learner-educator co-creation is needed to inform how educators can engage strategically in co-creation with healthcare students. The objective of this scoping review was to examine strategies for collaborative learner-educator decision-making during the design, implementation, or evaluation of student assessment in health professional education. Searches were conducted until August 1, 2024, in six databases with no date limitation (MEDLINE, Embase, Education Source Complete, CINAHL, ERIC and APA PsycInfo). Reference lists of included full-text papers and papers close to meeting inclusion criteria were manually searched, along with publications by conference abstract authors. We included all papers focused on how learners and educators share decision making regarding student assessment during a health professional course. Information about co-creation that occurs outside of a course or is not related to student assessment was excluded. Standard procedures for reviewing and summarizing data according to JBI methodology were used. Two reviewers independently screened documents and extracted data. Data about paper characteristics, where co-creation occurs, decisions that are co-created, process descriptions, and author conclusions were extracted and summarized. We screened 11,517 titles and abstracts, then 341 full-text reports for eligibility. In total, we identified 27 reports published between 1980 and 2025 that describe 25 unique courses where co-creation of assessment has been reported in the literature.Co-creation of assessment was reported in nursing, social work, medicine, health services navigation, paramedicine, pharmacy, occupational therapy and dental technology disciplines, at the undergraduate, graduate, and postgraduate levels. Most courses where co-creation occurred were mandatory. Reports spanned various years of study. Many assessment decisions were made together, predominantly assessment instructions and grading criteria. Diverse ways of co-creating with different levels of student influence over decisions were reported. The most reported strategy for co-creation was discussion during class time or in individual meetings. A wide range of benefits and ways to support co-creation were reported. Barriers, disadvantages, and future considerations were also reported. This review identifies and synthesizes existing examples of co-creation of assessment that have been integrated into health professional education. While it was mainly portrayed positively across included literature, there remains a lack of rigorous and diverse research in this area. The interventions identified in this review are diverse and highly contextual, limiting generalizability. Our findings provide a preliminary list of reported cases of co-creation of assessment and highlight contextual influences on implementation. Implementation processes need to be described in more detail to promote replication. Future research is needed to explore educator and student experiences, evaluate learning outcomes, and evaluate applicability across contexts to support evidence-informed practice. Co-creation of assessment offers a promising yet under-researched approach to creating more collaborative and authentic assessment strategies. It warrants thoughtful, context-specific application, research, and reporting in the literature. There are many ways healthcare students and teachers make decisions together during courses; more research is needed about their experiences and the effectiveness of co-creation when decisions impact student assessment. The review in brief: Reports from 8 different healthcare fields describe how students can work with their teachers during courses to make decisions about how assignments are planned, completed, and evaluated. What is this review about? Relying too much on lectures and memorization in health professional education can overwhelm students and may not prepare them for the kinds of thinking needed for safe, real-world patient care. Actively involving students in their education through co-creation (i.e., collaborative decision-making) is one strategy to customize learning to meet students’ needs. Even though there are benefits of teachers making decisions with students, there are also concerns because working together takes time and educational systems are not designed for it. There are many ways students may work with teachers during education. In this review, we focused on interactive shared decision-making where students have some choice and control over assessments. We focused on decisions about assessment because it affects all students. We did not limit the review to focus on any specific outcomes. What is the aim of this review? In this scoping review, we describe the details of 27 reports that described 25 different courses where students worked with teachers to make assessment decisions. We described where co-creation of assessment happens, what decisions are made together, how much students can influence decisions, how decisions were made, and what positive or negative consequences were noted. What are the main findings of this review? Included reports: This review includes 27 reports about co-creation of assessment in 25 different courses that were published between 1980 and 2025. About half of these papers were research studies. Papers came from 8 different countries, with most from North America. Where is co-creation of assessment happening? Co-creation of assessment happened in nursing, social work, medicine, and other allied health disciplines. It occurred in undergraduate, graduate, and postgraduate courses. Most of these courses were mandatory. What decisions are made together? Many decisions were made together, mostly when planning assignment instructions and how assignments would be graded. Other decisions that were made together happened during assignment planning, completion, and student evaluation. How much influence do students have? In most courses, students influenced specific assessment decisions such as assignment instructions or grading criteria. In other courses, students could choose what they wanted to change or worked in partnership with educators to make multiple decisions about how assessments were designed and/or graded. How do students influence decisions? Most of the time co-creation happened through discussion during class time or in individual meetings. Students also influenced decisions through email, surveys, working on documents, and more. What did authors report about the impact of co-creation? Overall, the authors thought co-creation was valuable and promoted learning. Many benefits and ways to support co-creation were described. Barriers, disadvantages, and ways to make co-creation more successful were also reported. What do the findings of this review mean? Co-creation in healthcare education needs to be done in ways that make sense for each course. The findings in this review are useful to help educators think of how they might try co-creation in their courses. This review should not be used to change policy because it does not contain enough evidence, and we do not comment on the effectiveness of each intervention included in this review. Future research is needed to understand educator and student experiences and to test the effectiveness of co-creation interventions for improving learning. How up-to-date is this review? In this review authors searched for papers up to August 1, 2024. This Campbell Systematic Review was published in May 2026.
Pica, the persistent ingestion of non-nutritive substances, poses significant health risks for individuals with intellectual disabilities yet remains under-recognised, particularly in home settings. This qualitative study explored the lived experiences of family members supporting a person with intellectual disabilities who engages in pica. Using Interpretative Phenomenological Analysis, four in-depth, semi-structured interviews were conducted with primary caregivers. Five superordinate themes were identified: Living on High Alert, Systemic Failures in Care, Emotional Erosion, Resourceful Parenting, and The Silence Around Pica. Caregivers described constant vigilance, emotional exhaustion, and the strain of managing life-threatening behaviours with little professional input. They also demonstrated creativity and resilience while fulfilling multiple roles as carers, advocates, and problem-solvers. Findings highlight a profound gap between the severity of pica and the adequacy of professional responses, underscoring the need for increased awareness, training, and specialist support. Pica is a behaviour where people eat non‐food items such as stones, fabric, or paint. It can be dangerous and sometimes life‐threatening. Pica is more common in people with intellectual disabilities, but it remains poorly understood, and families often manage it with little support. This study explored the experiences of family members caring for someone with an intellectual disability who engages in pica. Four parents took part in‐depth interviews. Families described living in constant vigilance to keep their loved one safe. Daily life was dominated by fear of choking or poisoning, exhaustion, and the loss of ordinary routines. Parents felt professionals often lacked knowledge about pica, dismissed their concerns, or gave unrealistic advice. This left families feeling isolated and forced to manage complex needs without adequate support. Despite these challenges, families showed creativity and resilience, developing practical ways to reduce risks and sharing ideas with others. However, this often came at an emotional and financial cost. Many described the mental strain of never being able to relax. Pica was described as a ‘silent’ issue—rarely discussed, even among professionals. Families wanted greater understanding, specialist training, and clearer support pathways. This research highlights a major gap between the risks families face and the help they receive. Recognising families' expertise and listening to their experiences could improve safety, reduce stress, and lead to better care for people who engage in pica.
Impact on quality of life due to inherited skin diseases (also known as genodermatoses) may lead to reproductive dilemmas for affected couples or individuals considering parenthood. Currently, little is known about reproductive decision-making (RDM) for those affected by or at-risk of genodermatoses. Couples/individuals' perspectives with genodermatoses were qualitatively explored by focusing on (i) the impact of these diseases on the desire to have children, (ii) the knowledge of different reproductive options and personal considerations and, (iii) experiences with reproductive counselling. Semi-structured interviews were conducted with participants aged ≥16 years, diagnosed with a genodermatosis, and an active, (un)fulfilled or future desire to have children and analysed using a reflexive thematic content approach. Thirty participants were interviewed until saturation. Two main themes and 9 subthemes were identified. Participants preferred wanting to avoid passing on their genodermatosis to offspring, thereby complicating RDM. This preference was influenced by negative experiences with the disease, resulting in fear and uncertainty about severe manifestations in offspring. Positives and shortcomings in clinical practice were expressed, particularly the lack of reproductive counselling as a standard part of care. This study highlights the substantial impact of genodermatoses in RDM and the importance of routine reproductive counselling for those affected by or at-risk of genodermatoses.
This paper explores migrant men's sexual and affective desires, the constraints on their sexuality, and how unmet needs are managed during migration and transit across Europe. Drawing on participant observation and repeated in-depth interviews with 39 migrant men in Brussels and Calais, the analysis shows that sexuality is neither suspended nor fully enacted, but shaped by legal precarity, material insecurity, homelessness, the volatility of mobility, and religious, cultural, and moral constraints. While participants expressed the wish for intimacy and affection, these desires were frequently managed through situational sexual encounters, intentional abstinence, refusal, or self-restraint. Findings demonstrate how legal surveillance extends into the sexual realm, impacting men's sexual behaviours and rendering sexuality a site of self-monitoring. By foregrounding migrant men's lived experience, this paper challenges narratives of migrant male hypersexuality and highlights how migration policies may govern not only borders, but also bodies, desires, and sexuality.