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Background: Limited research concerning existing inequities in mental health care and support services in the United Kingdom captures perceptions and lived experiences of the significantly underrepresented Muslim population. Methods: Underpinned by social constructivist theory, we used consultation to facilitate public and patient involvement and engagement (PPIE) to identify inequities in mental health care and support experienced by Muslims from minoritised ethnic communities living in deprived areas in Liverpool, UK. The rationale was to (a) better inform standards and policies in healthcare and (b) provide a psychologically safe space to members of the Muslim community to share perceptions and experiences of mental health care and support services. To ensure trustworthiness of the data, member checking was adopted. This paper describes the procedure to achieving this consultation, including our recruitment strategy, data collection and analysis as well as key findings. Findings: Twenty‐seven consultees attended the women's consultation and eight consultees attended the men's consultation. Consultees were from Yemeni, Somali, Sudanese, Egyptian, Algerian, Pakistani and Moroccan communities and share the Islamic faith. Four key interlinked themes were identified from consultees' narratives: (1) broken cycle of trust; (2) an overmedicalised model of care; (3) community mental health prevention initiatives; and (4) culturally conscious training and education. Conclusions: The Muslim population has identified numerous barriers to accessing mental health support and there is a need to resource activities that would aid deeper understanding of mental health support needs through continuous and meaningful community initiatives. This would afford mental health practitioners and organisations opportunities for developing realistic anti‐racism strategies, effectively adopting social prescription, strengthening partnerships and collaborations aimed at supporting delivery of evidence‐based mental health care provisions to tackle mental health inequities. Patient and Public Involvement: This paper reports on the involvement and engagement of Muslims from minoritised ethnic communities living in the Liverpool city region. [ABSTRACT FROM AUTHOR]

Aim: To capture and retain healthcare staff in postgraduate courses relevant to individual career aspirations, service requirements and continuous practice development (CPD) within an English UK university. Design: Two virtual career clinics for postgraduate practitioners to engage in CPD offers within the university. An online post‐enrolment online survey to explore their experiences of engagement with the university. Methods: Mixed: qualitative and quantitative methods. Engaging 10 participants attended the career clinics, and 42 participants with an online survey. Results: The career clinics were well received by participants who mapped CPD requirements and individual career aspirations. The surveys exposed challenges with marketing and enrolment; however, these were mitigated with support. Four recommendations are presented within this paper applicable to the international postgraduate education of all health practitioners. [ABSTRACT FROM AUTHOR]

Background. Cancer diagnosis is a complex and multifaceted process that can be stressful and anxiety-provoking for patients. Evidence-based tools and information aids that can be used for guiding and supporting patients during cancer investigations and after diagnosis are limited. This paper presents a user-centred codesign project that aims to develop a cancer pathway support tool for patients, carers, and healthcare professionals. Method. A mixed-method codesign approach was used including prototype development (January–March 2022), three online codesign workshops (April–June 2022), one-to-one feedback, and beta testing informed by the standardised Theoretical Framework of Acceptability (TFA) questionnaire (July–October 2022). Nine individuals with lived experience of cancer contributed to the project and are referred to as codesigners. Results. The codesigners valued the potential importance of a tool that can be used by the patients and carers if they want specific information about cancer investigations, diagnosis, and treatment. The ability to select what they need as opposed to long leaflets and generating their own questions for the healthcare providers were highlighted as important aspects of improving patient care. The tool was collectively designed to provide clear definitions of the cancer care pathway and easily accessible links from trusted resources and includes practical information to minimise the burden that can be experienced from preparation for appointments and tests. Beta testing results with a small sample of potential users including patients, carers, and healthcare providers (n = 23) showed high acceptability of the guide (range = 7–35, mean = 28.52, and standard deviation = 3.88) based on the TFA questionnaire. Conclusion. A cancer pathway support tool called "Your Cancer Pathway Support Guide (YCPSG)" was developed as a result of an iterative codesign process aiming to improve patient experience and outcomes for people referred on a suspected cancer pathway or who have been diagnosed with cancer. The tool provides information and support in both digital and PDF formats. Further studies are needed to evaluate the potential impact of "Your Cancer Pathway Support Guide" on patient outcomes and experience and the wider system. [ABSTRACT FROM AUTHOR]

Background: Databases have become an important tool in understanding trends and correlations in health care by collecting demographic and clinical information. Analysis of data collected from large cohorts of patients can have the potential to generate insights into factors identifying treatments and the characteristics of subgroups of patients who respond to certain types of care. The Care Response (CR) database was designed to capture patient-reported outcome measures (PROMs) for chiropractic patients internationally. Although several papers have been published analysing some of the data, its contents have not yet been comprehensively documented. The primary aim of this study was to describe the information in the CR database. The secondary aim was to determine whether there was suitable information available to better understand subgroups of chiropractic patients and responsiveness to care. This would be achieved by enabling correlations among patient demographics, diagnoses, and therapeutic interventions with machine learning approaches. Methods: Data in all available fields were requested with no date restriction. Data were collected on 12 April 2022. The output was manually scanned for scope and completeness. Tables were created with categories of information. Descriptive statistics were applied. Results: The CR database collects information from patients at the first clinical visit, 14, 30, and 90 days subsequently. There were 32,468 patient responses; 3210 patients completed all fields through the 90 day follow up period. 45% of respondents were male; 54% were female; the average age was 49. There was little demographic information, and no information on diagnoses or therapeutic interventions. We received StartBack, numerical pain scale, patient global impression of change, and Bournemouth questionnaire data, but no other PROMs. Conclusions: The CR database is a large set of PROMs for chiropractic patients internationally. We found it unsuitable for machine learning analysis for our purposes; its utility is limited by a lack of demographic information, diagnoses, and therapeutic interventions. However, it can offer information about chiropractic care in general and patient satisfaction. It could form the basis for a useful clinical tool in the future, if reformed to be more accessible to researchers and expanded with more information collected. [ABSTRACT FROM AUTHOR]

Background: There is a workforce shortage in the children's hospice sector, but there has been little research on the specific challenges of working in this setting and on how these challenges might be alleviated. To identify appropriate interventions to improve staff wellbeing, the drivers of wellbeing in children's hospices need to be known and measured. This paper reports on the development of two measures, one for work-related rewards and one for work-related stressors, for use in children's hospice care teams. Methods: A mixed-methods, four-stage study; the first three phases focused on the development of the scales, and the last stage focused on the validation of the scales. Participants of all stages were children's hospice care team staff members in the UK. Stage 1: survey assessing the relevance and comprehensiveness of the original scale items (N = 60); Stages 2 (focus groups; N = 16) and 3 (cognitive interviews; N = 14) to assess content validity; Stage 4: UK-wide survey (N = 414) to validate the final version of the new, children's hospice-specific scales using Rasch Analysis (RA) and Confirmatory Factor Analysis (CFA). Results: Due to poor fitting indices shown in the results from the RA, five items (out of 36) were removed from the new rewards scale used in the UK-wide survey and 20 (out of 62) were removed from the new stressors scale. CFA also supported the removal of the items and showed a one-factor structure for the rewards scale and a three-factor structure for the stressors scale were adequate—the sub-scales for the stressors scale related to caring for an ill or dying child ("Child" sub-scale), working with parents and families ("Parent" sub-scale), and stressors related to organisational factors, such as team conflict and workload ("Organisation" sub-scale). Conclusions: Both of the new scales showed good psychometric properties and can be useful in clinical settings and research to assess the perceived intensity of the work-related rewards and stressors for children's hospice staff. [ABSTRACT FROM AUTHOR]

There is increasing interest in modelling longitudinal dietary data and classifying individuals into subgroups (latent classes) who follow similar trajectories over time. These trajectories could identify population groups and time points amenable to dietary interventions. This paper aimed to provide a comparison and overview of two latent class methods: group-based trajectory modelling (GBTM) and growth mixture modelling (GMM). Data from 2963 mother–child dyads from the longitudinal Southampton Women's Survey were analysed. Continuous diet quality indices (DQI) were derived using principal component analysis from interviewer-administered FFQ collected in mothers pre-pregnancy, at 11- and 34-week gestation, and in offspring at 6 and 12 months and 3, 6–7 and 8–9 years. A forward modelling approach from 1 to 6 classes was used to identify the optimal number of DQI latent classes. Models were assessed using the Akaike and Bayesian information criteria, probability of class assignment, ratio of the odds of correct classification, group membership and entropy. Both methods suggested that five classes were optimal, with a strong correlation (Spearman's = 0·98) between class assignment for the two methods. The dietary trajectories were categorised as stable with horizontal lines and were defined as poor (GMM = 4 % and GBTM = 5 %), poor-medium (23 %, 23 %), medium (39 %, 39 %), medium-better (27 %, 28 %) and best (7 %, 6 %). Both GBTM and GMM are suitable for identifying dietary trajectories. GBTM is recommended as it is computationally less intensive, but results could be confirmed using GMM. The stability of the diet quality trajectories from pre-pregnancy underlines the importance of promotion of dietary improvements from preconception onwards. [ABSTRACT FROM AUTHOR]

Background Exposure to cold is known to be associated with severe health impacts. The primary epidemiological evidence for this is the seasonal variation in mortality. However, there is a paucity of directly measured data for personal cold temperature exposure. This paper develops the concept of experienced temperature, and reports how it varies with season, demographics and housing factors. Methods This study uses data from 77 743 UK Biobank participants. A novel method to directly measure participant's exposure to low temperatures using a thermistor in a wrist-worn activity monitor is described. These readings are combined with demographic and housing factor variables in a multiple regression model to understand underlying relationships. Results The study reveals a significant difference in experienced temperature of ~1.8°C between the periods of coldest and hottest external temperature. A number of demographic differences were also observed—such as people of Chinese ethnic background experiencing 0.65°C lower temperatures than other groups. Conclusions This paper presents primary evidence for a seasonal variation in experienced temperature. This variation likely contributes to cold related mortality and morbidity. It is hypothesized that this relationship would be less strong in countries which suffer fewer impacts of cold winter temperatures. [ABSTRACT FROM AUTHOR]

Following the outbreak of the COVID-19 pandemic, public-health measures introduced to stem the spread of the disease caused profound changes to patterns of daily-life communication. This paper presents the results of an online survey conducted to document adult cochlear-implant (CI) users' perceived listening difficulties under four communication scenarios commonly experienced during the pandemic, specifically when talking: with someone wearing a facemask, under social/physical distancing guidelines, via telephone, and via video call. Results from ninety-four respondents indicated that people considered their in-person listening experiences in some common everyday scenarios to have been significantly worsened by the introduction of mask-wearing and physical distancing. Participants reported experiencing an array of listening difficulties, including reduced speech intelligibility and increased listening effort, which resulted in many people actively avoiding certain communication scenarios at least some of the time. Participants also found listening effortful during remote communication, which became rapidly more prevalent following the outbreak of the pandemic. Potential solutions identified by participants to ease the burden of everyday listening with a CI may have applicability beyond the context of the COVID-19 pandemic. Specifically, the results emphasized the importance of visual cues, including lipreading and live speech-to-text transcriptions, to improve in-person and remote communication for people with a CI. [ABSTRACT FROM AUTHOR]

The importance of support to breastfeeding success is well established, as are the difficulties many mothers face in accessing the support they need. With the majority of UK mothers now accessing social media for support, Breastfeeding Support Facebook (BSF) groups have increased exponentially. BSF groups vary in type (local or national/international) and in moderation—overseen by breastfeeding mothers and by midwives or trained lactation specialists. Some groups aimed at supporting mothers in a specific geographical area also have associated face‐to‐face groups, facilitated as either professional or peer support. Little is currently known about these specific local groups, their prevalence, impact or value to mothers. This paper examines mothers' experiences of using local BSF groups and why they value them as part of a larger study exploring the impact of midwife moderation on these groups. An online survey consisting of open and closed questions was completed by 2028 mothers. Findings identified that local BSF groups are widely used and highly valued for their connection with local face‐to‐face services and other mothers. They offer access to expertise and shared experience in a format mothers find convenient and timely, improving confidence and self‐efficacy. Local BSF groups enable the formation of support networks and development of breastfeeding knowledge that mothers credit with increased well‐being, motivation and breastfeeding duration. As such, they have the potential to add value to local face‐to‐face services and improve breastfeeding experiences and knowledge in communities. The findings have important implications to support the development of integrated online interventions to improve public health. [ABSTRACT FROM AUTHOR]

Background: Research suggests that there may be bereavement experiences and support needs which are specific to family caregivers providing end of life care (EoLC), although this remains an under-researched area. This paper focuses on themes relating to bereavement which were derived from an analysis of free text survey responses collected in a research priority setting exercise for palliative and EoLC. Methods: The priority setting exercise involved a public survey, designed to generate research priorities. Rather than identify research topics, many people instead described their experiences and raised more general questions relating to palliative and end of life care. To explore these experiences and perspectives a supplementary thematic analysis was conducted on the survey responses. 1403 respondents took part, including patients, current and bereaved carers, health and social care professionals, volunteers and members of the public. Results: Several grief issues were identified, which seem specific to the experiences of family caregivers. Responses demonstrated a relationship between death experiences, feelings of guilt and bereavement outcomes for some family caregivers, as well as caregiver experiences of a "void" created by the withdrawal of professional support after death. Communication and support needs were also identified by participants. Conclusion: This analysis provides further evidence of some of the specific effects that caring for a loved one at the end of life can have on bereavement experiences. Finding ways of improving communication around the time of death and effective follow up approaches post death could help to address some of these issues. [ABSTRACT FROM AUTHOR]

Background The association between tea consumption and chronic kidney disease (CKD) remained inconsistent. We aimed to evaluate the association of tea consumption with new-onset CKD and examine the effects of common additives (milk and sweeteners) and genetic variations in caffeine metabolism on the association. Methods 176038 and 3104 participants free of CKD at baseline in the United Kingdom Biobank (UK Biobank) and Coronary Artery Risk Development in Young Adults (CARDIA) study were included, respectively. Dietary information was collected using 24-hour dietary recall questionnaires. The study outcome was new-onset CKD. Results In the UK Biobank, during a median follow-up of 12.13 years, 3535 (2.01%) participants developed CKD. Compared with tea non-consumers, the risk of new-onset CKD was significantly lower in unsweetened tea consumers (hazard ratio (HR)=0.84, 95% confidence interval (CI)=0.76-0.93), but not in sweetened tea consumers (HR=0.96, 95% CI=0.85-1.08), regardless of whether milk was added to tea. Accordingly, relative to tea non-consumers, the adjusted HRs (95% CIs) of new-onset CKD for participants who reported drinking unsweetened tea 1.5 or fewer, >1.5 to 2.5, >2.5 to 3.5, >3.5 to 4.5, and >4.5 drinks/d were HR= 0.86, 95% CI = 0.75-0.99; HR=0.88, 95% CI=0.78-1.00; HR=0.83, 95% CI=0.73-0.94; HR=0.83, 95% CI=0.72-0.95; and HR=0.86, 95% CI=0.75-0.99. Moreover, the association of unsweetened tea consumption with new-onset CKD was stronger among those with faster genetically predicted caffeine metabolism levels, although the interaction was insignificant (P-value interaction=0.768). Consistently, in the CARDIA study, compared with tea non-consumers, a significantly lower risk of new-onset CKD was found in unsweetened tea consumers (HR=0.80, 95% CI=0.65-0.98) but not in sweetened tea consumers (HR=0.97, 95% CI=0.70-1.34). Conclusions Compared with tea non-consumers, consumption of unsweetened tea, but not sweetened tea, was significantly associated with a lower risk of new-onset CKD, regardless of whether milk was added. [ABSTRACT FROM AUTHOR]

Background. Nursing professionals are pivotal in coordinating care and incorporating quality and safety strategies to enhance patient outcomes. Therefore, nursing education is paramount in preparing nurses to deliver safe care. Aim. In this study, we aimed to explore the self‐reported patient safety competence acquired by undergraduate nursing students in classroom and clinical settings and to compare their perceptions of how broader patient safety issues are addressed in their programmes. Methods. We conducted a cross‐sectional study in a public university in London, United Kingdom, and included Bachelor of Science nursing students from all fields of nursing and Nursing Associate students (n = 250, response rate 21.3%). Students completed the Health Professional Education Patient Safety Survey (H‐PEPSS). Paired t‐tests examined the differences in learning (classroom versus clinical setting). Analysis of variance was used to explore differences in self‐reported patient safety competencies across programmes and to compare students' perceptions of how broader patient safety issues are addressed in their curricula. Results. Mean domain scores indicate high confidence levels in patient safety competence for learning gained in both classroom and clinical settings for all students (>4.0/5.0). Results also indicate a consensus among students from various programmes that broader patient safety issues are adequately addressed in the curricula. Self‐reported confidence was highest in respondents enrolled in the Nursing Associate programme and students with prior experience in a clinical setting. Students were confident about their learnings of patient safety in their educational programmes. Conclusions. Greater patient safety competence indicates comprehension and familiarity with knowledge boundaries, which in turn acknowledges the limitations of autonomous practice. Our findings underscore the need for targeted educational interventions to enhance specific areas of patient safety competence and emphasise the shared responsibility of educators in fostering a culture of safety within healthcare. [ABSTRACT FROM AUTHOR]

Background: Care home staff are key providers of palliative and end-of-life care. Yet, little is known about how care home characteristics can influence care leader's confidence in their ability to provide optimal palliative and end-of-life care. Aim: To understand the influence of care home registration type (nursing, residential or dual registered) and size on senior care leader's confidence to provide palliative and end-of-life care. Design: An explanatory sequential mixed methods study comprising an online cross-sectional survey (including the Palliative Care Self-Efficacy Scale) and qualitative individual interviews. Analysis of survey data used a multivariate logistic regression and qualitative interview data used Framework Analysis. A 'Following the Thread' method was undertaken for data integration. Setting/participants: UK care home senior care leaders, purposively sampled by registration type, size and geographical location. Results: The online survey (N = 107) results indicated that nursing home senior care leaders had higher confidence scores on the Palliative Care Self-Efficacy Scale than residential care home leaders (aOR: 3.85, 95% CI 1.20-12.31, p = 0.02). Care home size did not show effect when adjusting for registration type (medium - aOR 1.71, 95% CI 0.59–4.97, p = 0.33; large – aOR 0.65, 95% CI 0.18–2.30, p = 0.5). Interviews (n = 27) identified three themes that promote confidence, (1) 'feelings of preparedness' stemming from staff expertise and experience and care home infrastructure, (2) 'partnership working' with external services as a valued member of the multidisciplinary team, and (3) a shared language developed from end-of-life care guidance. Conclusion: Care home senior care leader's confidence is influenced by care home characteristics, particularly availability of on-site registered nurses and the infrastructure of large care homes. All care home leaders benefit from training, working with external, multidisciplinary teams and use of guidance. However, mechanisms to achieve this differed by care home type and size. Further exploration is needed on successful integration of palliative care services and interventions to enhance confidence in residential care homes. [ABSTRACT FROM AUTHOR]

Many children with developmental language disorder (DLD) have emotion recognition and regulation difficulties, but there are currently no known interventions enhancing emotional awareness in this population. This study explores the impact of parents' perspectives regarding children with DLD emotional understanding through a parent-led online emotion recognition (ER) intervention. Ten parents of children with DLD aged 6–11 participated in the study. A nonconcurrent multiple baseline design was employed, allowing for a rigorous analysis of changes in parental beliefs over time. Weekly data were collected through the Parents' Beliefs About Children's Emotions Questionnaire. Interviews were also conducted to gain deeper insights into parents' perceptions regarding the ER skills of their children. Results indicated that parents' beliefs about the need for guiding and supporting their child's ER skills increased over the intervention. Interviews also supported this, and three main themes were generated. The intervention program increased parents' awareness of (a) the importance of ER for children with DLD, (b) emotion-focused communication and engagement with their child, and (c) the integration of emotions into daily life. This study is the first known study that explores parents' beliefs about children with DLD ER skills, highlighting the importance of supporting parents through accessible interventions. [ABSTRACT FROM AUTHOR]

Aims: To examine changes in advanced nurse practitioner (ANP) well‐being, satisfaction and motivation over a four‐year period. Design: Longitudinal Cohort study. Methods: Surveys were carried out each year from 2019 to 2022 with the same cohort of ANPs in the United Kingdom (UK). The survey consisted of demographics, questions on contemporary issues in advanced practice, National Health Service (NHS) staff survey questions and validated questionnaires. A core set of questions were asked every year with some changes in response to the COVID‐19 pandemic. Results: Response rate ranged from 40% to 59% and appeared to be affected by COVID‐19. Staff satisfaction with pay and the well‐being score were stable throughout. Other questions on well‐being, job satisfaction and motivation saw statistically significant reductions after 4 years. Open‐ended questions about ongoing well‐being concerns show participants are concerned about exhaustion levels caused by workload, staffing issues, abuse from patients and colleagues' mental health. Conclusion: The findings highlight a decline in ANP well‐being, job satisfaction and motivation post‐COVID‐19. Reasons for this, explored in the qualitative data, show that ANPs have faced extremely difficult working conditions. Urgent action is required to prevent a workforce retention crisis as many nursing staff are close to retirement and may not be motivated to remain in post. Impact: This study has followed ANPs through the most challenging years the NHS has ever seen. Job satisfaction, motivation and enjoyment of the job all significantly reduced over time. In many areas, the ANP role has been used to fill medical workforce gaps, and this will become harder to do if ANPs are dissatisfied, disaffected and struggling with stress and burnout. Addressing these issues should be a priority for policymakers and managers. Patient or public contribution: None as this study focussed on staff. Staff stakeholders involved in the design and conduct of the study. [ABSTRACT FROM AUTHOR]

Background: Recent evidence suggests that anosognosia or unawareness of cognitive impairment in Alzheimer's Disease (AD) may be explained by a disconnection between brain regions involved in accessing and monitoring information regarding self and others. It has been demonstrated that AD patients with anosognosia have reduced connectivity within the default mode network (DMN) and that anosognosia in people with prodromal AD is positively associated with bilateral anterior cingulate cortex (ACC), suggesting a possible role of this region in mechanisms of awareness in the early phase of disease. We hypothesized that anosognosia in AD is associated with an imbalance between the activity of large-scale resting-state functional magnetic resonance imaging (fMRI) networks, in particular the DMN, the salience network (SN), and the frontoparietal network (FPN). Methods: Sixty patients with MCI and AD dementia underwent fMRI and neuropsychological assessment including the Anosognosia Questionnaire Dementia (AQ-D), a measure of anosognosia based on a discrepancy score between patient's and carer's judgments. After having applied Independent Component Analysis (ICA) to resting fMRI data we performed: (i) correlations between the AQ-D score and functional connectivity in the DMN, SN, and FPN, and (ii) comparisons between aware and unaware patients of the DMN, SN, and FPN functional connectivity. Results: We found that anosognosia was associated with (i) weak functional connectivity within the DMN, in posterior and middle cingulate cortex particularly, (ii) strong functional connectivity within the SN in ACC, and between the SN and basal ganglia, and (iii) a heterogenous effect concerning the functional connectivity of the FPN, with a weak connectivity between the FPN and PCC, and a strong connectivity between the FPN and ACC. The observed effects were controlled for differences in severity of cognitive impairment and age. Conclusion: Anosognosia in the AD continuum is associated with a dysregulation of the functional connectivity of three large-scale networks, namely the DMN, SN, and FPN. [ABSTRACT FROM AUTHOR]

Introduction: The mental health of young people (aged 16–25 years) is a growing public health concern in the United Kingdom due to the increasing numbers of young people experiencing mental health difficulties, with many not in contact with mental health services. To design services that meet the needs of all young people, a diversity of young people must be involved in mental health research, beyond being participants. This Delphi study aimed to identify different types of 'involvement' and to define and describe 'under‐representation' in young people's involvement in mental health research. Methods: Twenty‐seven experts in young people's mental health research completed a series of online questionnaires. The experts were academic researchers, patient and public involvement (PPI) professionals and young 'experts by experience'. Round 1 generated panellists' views on 'involvement' and 'under‐representation'. Round 2 summarised panellists' responses from Round 1 and sought consensus (minimum 70% agreement) in nine question areas. Round 3 validated the findings of the previous rounds. Results: Consensus was achieved in eight out of nine areas, resulting in a matrix (with definitions) of the different types of young people's involvement in mental health research, from being advisors to involvement ambassadors. The findings generated an agreed‐upon definition of under‐representation, an identification of when in the research process there is under‐representation and the characteristics of the young people who are under‐represented. Experts further agreed on demographic data that should be collected to improve reporting on involvement. Conclusions: This study adds to our understanding of involvement and under‐representation in the context of young people's mental health research through expert consensus. It provides a practical resource for researchers considering involving young people in the research process and suggests the data that should be collected to improve reporting on the diversity of the young people involved. Patient and Public Contribution: A research oversight group of five young people advised on this study. They contributed throughout the project—from endorsing the research question to commenting on the findings and dissemination. Two of the group reviewed all participant materials and piloted the initial questionnaire. [ABSTRACT FROM AUTHOR]

Background: Patient and public involvement and engagement (PPIE) have long been considered important to good research practice. There is growing, yet diverse, evidence in support of PPIE with children and young people (CYP). We must now understand the various approaches to involvement of CYP in research. Aims: This rapid umbrella review aimed to provide an overview of when, how and to what extent CYP are involved in the conduct of health research, as well as the reported benefits, challenges, and facilitators of involvement. Methods: We searched OVID Medline, Embase and PubMed. Published reviews were included if they reported meaningful involvement of CYP in the conduct of health research. Extracted data were synthesised using thematic analysis. Results: The 26 reviews included were predominately systematic and scoping reviews, published within the last decade, and originating from North America and the United Kingdom. CYPs were involved in all stages of research across the literature, most commonly during research design and data collection, and rarely during research funding or data sharing and access. Researchers mostly engaged CYP using focus groups, interviews, advisory panels, questionnaires, and to a lesser extent arts‐based approaches such as photovoice and drawing. Visual and active creative methods were more commonly used with children ≤12 years. The evidence showed a shared understanding of the benefits, challenges, and facilitators for involvement of CYP, such as time and resource commitment and building partnership. Conclusion: Overall, the review identified consistency in the range of methods and approaches used, and stages of research with which CYP are commonly involved. There is a need for more consistent reporting of PPIE in the literature, both in terminology and detail used. Furthermore, the impact of approaches to CYP involvement on research and community outcomes must be better evaluated. Patient/Public Contribution: This review forms part of broader research initiatives being led by the authors. Together, these projects aim to support embedding of child voices in research practice and to explore the desirability and suitability of Young Persons Advisory Groups within birth cohort studies. The findings from this review, alongside public and stakeholder consultation, will inform development of resources such as practice recommendations to guide future involvement of CYP in health research undertaken at the author's respective institutions. [ABSTRACT FROM AUTHOR]

Background: The Eatwell guide reflects the UK government's recommendations for a healthy and balanced diet. Previous research has identified associations between healthy eating patterns and both cardiovascular and brain health, although there is little evidence specifically focusing on the Eatwell Guide. To date no research has investigated associations between the Eatwell Guide and risk for future dementia. Methods: Data from the PREVENT dementia cohort study baseline visit was used in this analysis. Binary and graded Eatwell Guide scores (BEWG, GEWG) were created from a self-reported Food Frequency Questionnaire. The CAIDE score was included as the primary outcome measure to represent risk for future Alzheimer's disease. Secondary outcome measures included cardiometabolic health measures and brain health measures. Generalised additive models were run in R. Results: A total of 517 participants were included in the analysis, with a mean BEWG score of 4.39 (± 1.66) (out of a possible 12 points) and GEWG score of 39.88 (± 6.19) (out of a possible 60 points). There was no significant association between either Eatwell Guide score and the CAIDE score (BEWG β: 0.07, 95% confidence interval (CI): -0.07, 0.22; GEWG β: 0.02, 95% CI: -0.02, 0.06) or any measures of brain health. There was a significant association between higher GEWG score and lower systolic and diastolic blood pressure and body mass index (BMI) (systolic β: -0.24, 95% CI: -0.45, -0.03; diastolic β: -0.16, 95% CI: -0.29, -0.03; BMI β: -0.09, 95% CI: -0.16, -0.01). Conclusions: Although not directly associated with the CAIDE score, the Eatwell Guide dietary pattern may be beneficial for dementia prevention efforts through the modification of hypertension and obesity, which are both known risk factors for dementia. Future work could replicate these findings in other UK-based cohorts as well as further development of Eatwell Guide scoring methodologies. [ABSTRACT FROM AUTHOR]

Infants, children and young people with life-limiting or life-threatening conditions often experience acute, transient pain episodes known as breakthrough pain. There is currently no established way to assess breakthrough pain in paediatric palliative care. Anecdotal evidence suggests that it is frequently underdiagnosed and undertreated, resulting in reduced quality of life. The development of a standardised paediatric breakthrough pain assessment, based on healthcare professionals' insights, could improve patient outcomes. This study aimed to explore how healthcare professionals define and assess breakthrough pain in paediatric palliative care and their attitudes towards a validated paediatric breakthrough pain assessment. This was a descriptive qualitative interview study. Semi-structured interviews were conducted with 29 healthcare professionals working in paediatric palliative care across the UK. An inductive thematic analysis was conducted on the data. Five themes were generated: 'the elusive nature of breakthrough pain', 'breakthrough pain assessment', 'positive attitudes towards', 'reservations towards' and 'features to include in' a paediatric breakthrough pain assessment. The definition and assessment of breakthrough pain is inconsistent in paediatric palliative care. There is a clear need for a validated assessment questionnaire to improve assessment, diagnosis and management of breakthrough pain followed by increased healthcare professional education on the concept. [ABSTRACT FROM AUTHOR]

Visual impairment (V.I.) has been associated with a negative impact on activities of daily living (ADL) and navigation outside the home. Adults from minority ethnic communities are projected to make up an increasing proportion of the V.I. population in the UK, yet the evidence relating to their experiences of living with V.I. is limited. This article uses data collected by the V.I. Lives Survey, between December 2019 and November 2020. Using secondary analysis of anonymised survey data, this article explores self-reported functioning relating to ADL, navigation outside of the home, and use of technology to access information in a matched control sample of adults from minority ethnic (MEC) and white communities (WC). The findings showed that most issues relating to self-efficacy, accessibility of public environments, and technology were significantly more important to MEC than WC participants. A significantly higher proportion of MEC participants required frequent help with cooking, received support for ADL from siblings and other family members, and had their shopping delivered. WC participants were significantly more likely to receive help with shopping from their spouse/partner and use public transport as much as they liked. Future research will need to confirm these findings in a larger sample and explore the reasons for them. [ABSTRACT FROM AUTHOR]

Background: Developments in digital health have the potential to create new opportunities for healthcare professionals support delivery of palliative care. Globally, many palliative care professionals used digital health innovations to support communication with staff, patients and caregivers, during COVID-19 pandemic. However, there is limited data about the views of palliative care professionals of using digital health to support communication during the pandemic. We aimed to describe how palliative care professionals used technology to support communication (multidisciplinary team working, education and with patients and family caregivers) during the COVID-19 pandemic. Method(s): UK based palliative care healthcare professionals completed an electronic questionnaire to describe their use of digital health, during the COVID-19 pandemic, to support (1) communication within the multidisciplinary team (MDT), (2) education and (3) to support communication with patients and carers. Results: Two hundred and thirty-four palliative care professionals participated. Most (n = 227, 97%) described an increase in their use of digital health, to support communication, since the start of the COVID-19 pandemic. We identified benefits and challenges for digital health communication, which we summarised into themes, including 'a new way of working', 'developing a new approach to learning' and 'impacting care'. Conclusion(s): Since the pandemic, palliative care professionals have increased their use of digital health to support communication in clinical practice. We have identified facilitators and barriers for future practice. Further work should identify the levels of support needed for organisations to ensure that digital health interventions are meaningfully used to help palliative care professionals effectively communicate with patients, caregivers and staff. [ABSTRACT FROM AUTHOR]

A child's disability, long-term illness, or mental ill-health is known to affect siblings' health, social life, school engagement, and quality of life. This article addresses a research gap by its focus on young sibling carers and the impact of providing care to a sibling. A cross-national survey study was conducted in 2018–2019 (Italy, the Netherlands, Slovenia, Sweden, Switzerland, the UK) to examine the incidence of adolescent sibling carers, the extent of care they provide, and their self-reported health, well-being, and school situation. The survey was completed by 7146 adolescents, aged 15–17, and 1444 of them provided care to family members with health-related conditions. Out of these, 286 were identified as Sibling Carers and 668 as Parent Carers, while 181 had both sibling(s) and parent(s) with health-related conditions, and thus were identified as Sibling–Parent Carers. Sibling Carers and Sibling–Parent Carers carried out higher levels of caring activities compared to Parent Carers. They reported both positive aspects of caring, such as increased maturity, and negative aspects, such as mental ill-health, impact on schooling and a lack of support. To reduce the negative aspects of a sibling carer role, it is important to recognise them and to implement early preventive measures and formal support. [ABSTRACT FROM AUTHOR]

Background: Eating self-regulatory capacity can help individuals to cope with the obesogenic environment and achieve, as well as maintain, a healthy weight and diet. At present, there is no comprehensive, reliable and valid questionnaire for assessing this capacity and measuring change in response to self-regulation interventions in adults. This paper reports the development of the Self-regulation of Eating Behaviour Questionnaire (SREBQ) for use in UK adults, and presents evidence for its reliability and construct validity. The development of the SREBQ involved generation of an item pool, followed by two pilot studies (Samples 1 and 2) and a test of the questionnaire's underlying factor structure (Sample 3). The final version of the SREBQ was then assessed for reliability and construct validity (Sample 4). Results: Development of the SREBQ resulted in a 5-item questionnaire. The face validity was satisfactory, as assessed by the pilot studies. The factor structure analysis (Sample 3) suggested that it has a single underlying factor, which was confirmed in a second sample (Sample 4). The SREBQ had strong construct validity, showing a positive correlation with general measures of self-regulation. It was also positively correlated with motivation and behavioural automaticity, and negatively correlated with food responsiveness and emotional over-eating (p < 0.001). It showed good discriminant validity, as it was only weakly associated with satiety responsiveness, food fussiness and slowness in eating. Conclusions: The SREBQ is a reliable and valid measure for assessment of eating self-regulatory capacity in the general UK adult population. [ABSTRACT FROM AUTHOR]

Background: Family history assessment can identify individuals above population-risk for cancer to enable targeted Screening, Prevention, and Early Detection (SPED). Family History Questionnaire Service (FHQS) is a resource-efficient patient-facing online tool to facilitate this. In the UK, cancer risk assessment is usually only offered to concerned individuals proactively self-presenting to their GP, leading to inequity in accessing SPED in the community. Aim: To improve access to community cancer genetic risk assessment and explore barriers to uptake. Design & setting: Service development project of a digital pathway using the FHQS for cancer risk assessment across four general practices within the clinical remit of the South West Thames Centre for Genomics (SWTCG). Method: 3100 individuals aged 38-50 years were invited to complete the FHQS through either text message or email. A random selection of 100 non-responders were contacted to determine barriers to uptake. Results: In total, n = 304/3100 (10%) registered for the FHQS. Responders were more likely to be British (63% vs 47%, P<0.001), speak English as their main language (92% vs 76%, P<0.001), and not require an interpreter (99.6% vs 94.9%, P = 0.001). Of 304 responders, 158 (52%) were automatically identified as at population-risk without full family history review. Of the remaining 146 responders, 52 (36%) required either additional screening referral (n = 23), genetics referral (n = 15), and/or advice to relatives (n = 18). Of 100 non-responders contacted, eight had incorrect contact details and 53 were contactable. Reasons for not responding included not receiving invitation details (n = 26), losing the invitation (n = 5), or forgetting (n = 4). Conclusion: The FHQS can be used as part of a low-resource primary care pathway to identify individuals in the community above population-risk for cancer requiring action. This study highlighted barriers to uptake requiring consideration to maximise impact and minimise inequity. [ABSTRACT FROM AUTHOR]

Background: Information on the hours of work of UK doctors is limited, and what exists relies on self-designed questionnaires in England. Aim: To understand trends in the annual stock of physicians' hours and their main determinants. Design & setting: A quantitative study in which data were collected from the Quarterly Labour Force Survey (QLFS) between 1998 and 2020, under the End User Licence (EUL), in the UK. Method: Descriptive and linear regression models of labour supply for doctors (pooled), GPs, and hospital doctors. Results: Between 1998 and 2020, while the headcount of doctors grew by 128.79% for hospital doctors and 45.28% for GPs, hours of work dropped by 20.80% for hospital doctors and 25.37% for GPs. Hence, the annual stock of hours grew by 81.20% for hospital doctors but by a modest 8.42% for GPs. Female doctors worked 8.68 fewer hours than males, with GPs reporting the largest reduction (-11.82 hours, 95% confidence interval [CI] = -13.31 to -10.33 and -6.75, 95% CI = -9.32 to -4.19, in the full specification). Family decisions are associated with a fall in doctors' work hours and modest growth in the annual stock of hours. These determinants and overtime are drivers of part-time work. Conclusion: Despite the increase in the headcount of GPs, their hours of work dropped over the study period, generating a more steady and modest growth in their total annual stock of hours compared with hospital doctors. Female GPs work fewer hours than male GPs and are more likely to work part-time due to childbearing, marriage/co-habitation, and overtime work. [ABSTRACT FROM AUTHOR]

Introduction: Although self-evaluation i.e., negative perceptions of the self is a common depression symptom in adolescents, little is known about how this population spontaneously describe their self and available data on adolescent self-evaluation is limited. This study aimed to generate and report on a list of words used by healthy adolescents and those with elevated depression symptoms to describe their self-evaluation. Linguistic analysis (LIWC) was then used to compare self-evaluation between the two groups. Methods: Adolescents aged 13–18 years (n = 549) completed a measure of depression symptoms (the Mood and Feelings Questionnaire) and a measure of self-evaluation (the Twenty Statements Test). Responses were then collated and presented in a freely accessible resource and coded using Linguistic Inquiry Word Count (LIWC) analysis. Results: Self-evaluation words generated by adolescents were uploaded to a publicly accessible site for future research: https://doi.org/10.15125/BATH-01234. Adolescents with elevated depression symptoms described themselves as 'Tired' and 'Sad' more than healthy adolescents. However, there was no difference between groups in respect to their use of specific positive, prosocial self-evaluation 'words' (i.e., 'Caring' and 'Kind). Following Linguistic Inquiry Word Count (LIWC) analysis, adolescents with elevated depression symptoms generated significantly more words than healthy adolescents, generated more words classified as negative emotion, anxiety and sadness and generated fewer words classified positive emotion than healthy adolescents. Conclusions: As predicted by the cognitive model of depression, our findings suggest that adolescents with elevated symptoms of depression generated more negative self-evaluation words than healthy adolescents; however they also generated prosocial positive self-evaluation words at the same rate as non-depressed adolescents. These novel data therefore identify an 'island' of resilience that could be targeted and amplified by psychological treatments for adolescent depression, and thus provide an additional technique of change. [ABSTRACT FROM AUTHOR]

Background. The implementation of a complex intervention is heavily influenced by individual context. Variation in implementation and tailoring of the intervention to the particular context will occur, even in a trial setting. It is recognised that in trials, evaluating the process of implementation of a complex intervention is important, yet process evaluation methods are rarely reported. The WAVES study is a cluster randomised controlled trial to evaluate the effectiveness of an obesity prevention intervention programme targeting children aged 6–7 years, delivered by teachers in primary schools across the West Midlands, UK. The intervention promoted activities encouraging physical activity and healthy eating. This paper presents the methods used to assess implementation of the intervention. Methods. Previous literature was used to identify the dimensions of intervention process and implementation to be assessed, including adherence, exposure, quality of delivery, participant responsiveness, context, and programme differentiation. Results. Multiple methods and tools were developed to capture information on all these dimensions. These included observations, logbooks, qualitative evaluation, questionnaires and research team reflection. Discussion. Data collection posed several challenges, predominantly when relying on teachers to complete paperwork, which they saw as burdensome on top of their teaching responsibilities. However, the use of multiple methods helped to ensure data on each dimension, where possible, was collected using more than one method. This also allowed for triangulation of the findings when several data sources on any one dimension were available. Conclusions. We have reported a comprehensive approach to the assessment of the implementation and processes of a complex childhood obesity prevention intervention within a cluster randomised controlled trial. These approaches can be transferred and adapted for use in other complex intervention trials. [ABSTRACT FROM AUTHOR]

Background: We developed a 29-item Questionnaire, Long-term Unmet Needs in MS (LUN-MS) to identify the unmet needs of people with multiple sclerosis (pwMS). Objective: To assess acceptability, test-retest reliability, internal consistency, and validity of the LUN-MS. Methods: Participants completed the LUN-MS and MSIS-29 twice, four weeks apart. Acceptability was assessed by looking at the response rate in each time point. Reliability was calculated by comparing the response during the two time points using Cohen's weighted kappa. Using principal component analysis, the dimensionality of the questionnaire's items was reduced, to five domains and the internal consistency of each domain was assessed using Cronbach's alpha. Concurrent validity was tested by comparing the total LUN-MS score against MSIS-29 and EQ-5D-3L using Pearson's product-moment correlation coefficient. Results: Among 88 participants, rate of completion at time points-1 and 2 was 96 and 80% respectively. Test-retest reliability for individual items was between fair to near-perfect (weighted Cohen's kappa 0.39-0.81). The unmet needs could be divided into five internally consistent domains (Cronbach's alpha 0.83-0.74): neuropsychological, ambulation, physical, interpersonal relationship and informational. Concurrent validity with MSIS-29 (r = 0.705, P <.001) and EQ-5D-3L (r = 0.617, P <.001) were good. Conclusion: LUN-MS is a reliable, valid, and acceptable tool to identify the unmet needs of pwMS. [ABSTRACT FROM AUTHOR]

Hemophilia is a bleeding disorder caused by a single absent/defective gene and characterized by a lack of functional clotting factors. People with hemophilia may experience joint damage, pain, and psychological impairments, all of which could contribute to reduced health-related quality of life (HRQoL). The current standard of care is clotting factor replacement, which is associated with regular infusions; therefore, alternative treatments such as gene therapy (GT) are in development. GT involves the delivery of a functional copy of the clotting factor 8/9 gene by a single infusion into the patient's cells, enabling them to produce their own clotting factor VIII/IX. The impact of treatment on patients' HRQoL can be assessed using hemophilia-specific patient-reported outcome (PRO) measures. Since these measures were designed before the advent of GT, there is a need for updated individualized PRO measures. Patient groups and regulatory authorities emphasize the need for increased patient engagement when considering clinical trial design. Here, we provide patients' perspective on undergoing GT and discuss how to capture the patient voice when measuring the therapy's transformative impact. [ABSTRACT FROM AUTHOR]

Short breaks help maintain caring relationships, enabling people to remain living in their own homes and contributing significant economic benefit to public services. However, relatively little is known about the added social value generated by community-based short breaks. To address this evidence gap, we explored the feasibility of using a social return on investment (SROI) evaluation to explore a day support service in North Wales for people living with dementia and their unpaid carers. Following good practice for evaluating complex interventions, we developed a logic model based on the literature and interviews to understand the mechanisms and outcomes of the day support service. Using questionnaires, we quantified outcomes for the current service cohort, which included people living with dementia, unpaid carers, and paid companions. Seven people living with dementia, three unpaid carers, and four companions completed questionnaires. By following the SROI analysis approach, three key learning points were identified. The first was around ways to capture outcomes from all stakeholder subgroups expected to experience material change. The second concerned the importance of collecting longitudinal data. This included the need to consider how to adapt the SROI method to work with small populations. The third concerned how to value "maintenance" of wellbeing as well as improved wellbeing. [ABSTRACT FROM AUTHOR]

Objective To describe factors associated with change in health-related quality of life (HRQOL) in people living with gout in primary care. Methods In a UK prospective cohort study, adults with a diagnosis of gout registered with 20 general practices completed the Gout Impact Scale (GIS; scale 0–100), 36-item Short Form Physical Function subscale (PF-10; 0–100) and HAQ Disability Index (HAQ-DI; 0–3) via postal questionnaires at baseline and 6, 12, 24 and 36 months. Linear mixed modelling was used to investigate factors associated with changes in HRQOL over 3 years. Results A total of 1184 participants responded at baseline (adjusted response 65.6%); 990 (83.6%) were male, with a mean age of 65.6 years (s. d. 12.5). A total of 818, 721, 696 and 605 responded at 6, 12, 24 and 36 months, respectively. Factors associated with worse disease-specific and generic HRQOL over 3 years were flare frequency (five or more flares; GIS subscales, PF-10), oligo/polyarticular flares (GIS subscales, PF-10, HAQ-DI), worse pain (GIS subscales, PF-10, HAQ-DI), body pain (GIS subscales, PF-10, HAQ-DI) and more severe depression (GIS subscales, PF-10, HAQ-DI) (P  ≤ 0.05). More severe anxiety was associated with worse disease-specific HRQOL only (GIS subscales). Older age (PF-10), being female (PF-10, HAQ-DI) and BMI (HAQ-DI) were associated with worse generic HRQOL (P  ≤ 0.05). Conclusion Gout-specific, comorbid and sociodemographic factors were associated with change in HRQOL over a 3-year period, highlighting people at risk of worse outcomes who could be targeted for interventions. [ABSTRACT FROM AUTHOR]

Aim To examine trends in public awareness and knowledge of drinking guidelines in the UK since their revision in 2016, which had moved from a daily to a weekly guideline, made the guideline the same for men and women, and reduced the guideline for men by around one-third. Method Data were from a representative, repeat cross-sectional survey. We analysed changes in awareness and knowledge of drinking guidelines among 8168 adult drinkers between 2016 and 2022 and associations with sociodemographic characteristics, smoking status and level of alcohol consumption. Results The proportion of drinkers aware of guidelines declined from 86.0% (95%CI 84.0–88.0%) in 2016 to 81.7% (79.5–84.0%) in 2019, then increased during the COVID-19 pandemic, peaking at 91.6% (90.1–93.1%) in 2020. The proportion who correctly identified the guideline as a maximum of exactly 14 units/week remained at around a quarter from 2016 (25.0%, 22.4–27.5%) to 2018 (25.8%, 23.2–28.3%), whereas the proportion who gave a figure of 14 units or fewer rose from 52.1 (49.2–55.0%) to 57.4% (54.6–60.3%). However, by 2022, guideline knowledge had worsened significantly, with these figures falling to 19.7 (17.4–21.9%) and 46.5% (43.6–49.4%), respectively. Changes over time were similar across subgroups. Odds of guideline awareness and knowledge were higher among drinkers who were aged ≥35, female, more educated and from more advantaged social grades. Conclusions The majority of adult drinkers in the UK are aware of low-risk drinking guidelines. However, 6 years since their announcement, knowledge of the revised drinking guidelines remains poor. Less than a quarter know the recommended weekly limit and only around half think it is 14 units or less. Inequalities have persisted over time, such that disadvantaged groups remain less likely to know the guidelines. [ABSTRACT FROM AUTHOR]

Background: Several previous studies have shown that dietary patterns are associated with the incidence of depressive symptoms. However, the results have been inconsistent. This study aimed to prospectively investigate the association between dietary patterns and the risk of depressive symptoms in two large cohort studies. Methods: The Tianjin Chronic Low-grade Systemic Inflammation and Health (TCLSIH) cohort study included a total of 7,094 participants living in Tianjin, China from 2013 to 2019, and the UK Biobank cohort study includes 96,810 participants who were recruited from 22 assessment centers across the UK taken between 2006 and 2010. All participants were free of a history of cardiovascular disease (CVD), cancer, and depressive symptoms at baseline. Dietary patterns at baseline were identified with factor analysis based on responses to a validated food frequency questionnaire in TCLSIH or Oxford WebQ in UK Biobank. Depressive symptoms were evaluated using the Chinese version of the Zung Self-Rating Depression Scale (SDS) in TCLSIH or hospital inpatient records in UK Biobank. Cox proportional hazards regression models were used to estimate the association between dietary patterns and depressive symptoms. Results: A total of 989, and 1,303 participants developed depressive symptoms during 17,410 and 709,931 person-years of follow-up. After adjusting for several potential confounders, the multivariable HRs (95% CIs) of the depressive symptoms were 0.71 (0.57, 0.88) for traditional Chinese dietary pattern, 1.29 (1.07, 1.55) for processed animal offal included animal food dietary pattern, and 1.22 (1.02, 1.46) for sugar rich dietary pattern in TCLSIH (all Q4 vs Q1). In the UK Biobank, the HRs (95% CIs) of depressive symptoms were 1.39 (1.16, 1.68) for processed food dietary pattern (Q4 vs Q1), 0.90 (0.77, 1.00) for healthy dietary pattern (Q3 vs Q1), and 0.89 (0.75, 1.05) for meat dietary pattern (Q4 vs Q1) in the final adjusted model. Conclusion: Dietary patterns rich in processed foods were associated with a higher risk of depressive symptoms, and following a traditional Chinese dietary pattern or healthy dietary pattern was associated with a lower risk of depressive symptoms, whereas meat dietary pattern was not associated. [ABSTRACT FROM AUTHOR]

Background: People experiencing homelessness (PEH) are known to be at higher risk of adverse health outcomes and premature mortality when compared to the housed population and often face significant barriers when attempting to access health services. This study aimed to better understand the specific health care needs of PEH and the barriers and facilitators associated with their timely and equitable access to health services in the European context. Methods: We conducted an exploratory cross-national qualitative study involving people with lived experience of homelessness and health and social care professionals in Austria, Greece, Spain, and the UK. A total of 69 semi-structured interviews comprising 15 social care professionals, 19 health care professionals, and 35 PEH were completed, transcribed, and analysed thematically. Results: Findings were organised into three overarching themes relating to the research question: (a) Health care needs of PEH, (b) Barriers to health care access, and (c) Facilitators to health care access. Overall, the general health of PEH was depicted as extremely poor, and mainstream health services were portrayed as ill-equipped to respond to the needs of this population. Adopting tailored approaches to care, especially involving trusted professionals in the delivery of care, was identified as a key strategy for overcoming existing barriers. Conclusions: The results of this study indicate there to be a high degree of consistency in the health care needs of PEH and the barriers and facilitators associated with their access to health care across the various European settings. Homelessness in itself is recognized to represent an essential social determinant of health, with PEH at risk of unequal access to health services. Changes are thus required to facilitate PEH's access to mainstream primary care. This can also be further complemented by investment in 'in-reach' services and other tailored and person-centred forms of health care. Trial registration: This study was registered retrospectively on June 6, 2022, in the registry of ClinicalTrials.gov under the number NCT05406687. [ABSTRACT FROM AUTHOR]

Background: Bereavement is a common traumatic event associated with adverse health outcomes across the life course. Despite these risks, not all bereaved individuals experience these negative effects. Limited scientific consensus exists on how to define resilience in individuals who have experienced the death of a loved one. Methods: Using a sample of N = 3766 youth from the Avon Longitudinal Study of Parents and Children birth cohort, we identified bereavement of a family member between ages 7 and 8.5. We derived and compared three different approaches to assess resilience among bereaved youth. Trajectory-based psychological resilience identified sub-groups with similar psychological symptom profiles between ages 6 and 16 using latent growth mixture models. Relative psychological resilience at age 16 leveraged standardized residuals from a model regressing psychological symptoms on bereavement to determine better-than-expected psychological functioning relative to bereavement status. Relative cross-domain resilience around age 16 was a sum score of the residuals approach applied to eight unique domains of health. Predictive validity of each approach was assessed using depressive symptoms at age 17.5 Results: Overall, N = 877 (23%) youth were bereaved of a family member between ages 7 and 8.5. Using latent growth mixture models, a three-class solution described 84% of bereaved youth with low and stable psychological symptoms over time, 8% with worsening symptoms, and 8% with improving yet elevated symptoms. Each relative resilience score was largely concordant with the trajectory-based approach in identifying individuals as resilient or not, though relative psychological resilience demonstrated a stronger degree of concordance than the cross-domain score. Relative psychological and cross-domain resilience exhibited moderate to low correlation, depending on the domains included (r = 0.14–0.43). For each approach, resilience significantly predicted lower depressive symptoms at age 17.5, highlighting predictive validity of these measures. Conclusions: Psychological symptom trajectories among bereaved youth aligned with those previously identified among bereaved adults. The residual-based approach to defining resilience exhibited limited utility in the context of bereavement. When identifying risk and resilience after bereavement, researchers and clinicians must address the interplay across psychosocial and physical health domains, as bereaved youth considered resilient from a mental health perspective may benefit from intervention in other domains. [ABSTRACT FROM AUTHOR]

BACKGROUND: Evidence for a potential link between air pollution and rheumatoid arthritis (RA) is inconsistent, and the modified effect of genetic susceptibility on the relationship between air pollution and RA has not been well studied. OBJECTIVE: Using a general population cohort from the UK Biobank, this study aimed to investigate the associations between various air pollutants and the risk of incident RA and to further estimate the impact of combined exposure to ambient air pollutants on the risk of developing RA under the modification effect of genetic predisposition. METHODS: A total of 342,973 participants with completed genotyping data and who were free of RA at baseline were included in the study. An air pollution score was constructed by summing the concentrations of each pollutant weighted by the regression coefficients with RA from single-pollutant models to assess the combined effect of air pollutants, including particulate matter (PM) with diameters ≤ 2.5 µm (PM2.5), between 2.5 and 10 µm (PM2.5–10), and ≤ 10 µm (PM10), as well as nitrogen dioxide (NO2) and nitrogen oxides (NOx). In addition, the polygenic risk score (PRS) of RA was calculated to characterize individual genetic risk. The Cox proportional hazard model was used to estimate hazard ratios (HRs) and 95% confidence intervals (95% CIs) of associations of single air pollutant, air pollution score, or PRS with incident RA. RESULTS: During a median follow-up time of 8.1 y, 2,034 incident events of RA were recorded. The HRs (95% CIs) of incident RA per interquartile range increment in PM2.5, PM2.5-10, PM10, NO2, and NOx were 1.07 (1.01, 1.13), 1.00 (0.96, 1.04), 1.01 (0.96, 1.07), 1.03 (0.98, 1.09), and 1.07 (1.02, 1.12), respectively. We also found a positive exposure-response relationship between air pollution score and RA risk (푝Trend = 0.000053). The HR(95% CI) of incident RA was 1.14 (1.00, 1.29) in the highest quartile group compared with the lowest quartile group of the air pollution score. Furthermore, the results of the combined effect of air pollution score and PRS on the RA risk showed that the risk of RA incidence in the highest genetic risk and air pollution score group was almost twice that of the lowest genetic risk and air pollution score group [incidence rate (IR) per 100,000 person-years: 98.46 vs. 51.19, and HR= 1.73 (95% CI: 1.39, 2.17) vs. 1 (reference)], although no statistically significant interaction between the air pollution and genetic risk for incident RA was found (푝Interaction >0.05). DISCUSSION: The results revealed that long-term combined exposure to ambient air pollutants might increase the risk of RA, particularly in those with high genetic risk. [ABSTRACT FROM AUTHOR]

Background: Children who have adverse childhood experiences (ACEs) tend to have more physical and mental health problems when they are adults compared with people who do not have ACEs. Evidence suggests that partial or no immunisation status can be associated with factors (including ACEs) that make children at higher risk of poor outcomes than immunised children. Aim: To explore the idea that ‘missed immunisations’ could be used as a proxy indicator in identifying children at risk of worse outcomes. Design & setting: Service improvement study in seven GP practices in south London, UK. Method: Children aged 0–3 years who were ≥3 months late for immunisations were identified; their computer notes were reviewed during interdisciplinary meetings between health visitors (HVs) and GP practice staff. A bespoke template was used to guide discussions and to record action plans. Evaluation methods included a survey of practitioners and anonymised questionnaires about care management for a sample of children. Results: Issues of concern, including some ACEs (for example, domestic abuse, mental health concerns in parent), were identified in 57% of children. Ninety-four per cent of practitioners found multidisciplinary meetings useful; 62% of practitioners changed the way they thought about providing care to very young children and their families. Of the children discussed during multidisciplinary meetings, 38% subsequently caught up on immunisations. Conclusion: ‘Late for immunisations’ appears to be a useful indicator for proactively identifying children with issues that make them at risk of poorer outcomes. Integrated working between GPs and HVs is important for ensuring targeted care is provided to families. [ABSTRACT FROM AUTHOR]

Electronic healthcare records (EHRs) are a rich source of information with a range of uses in secondary research. In the United Kingdom, there is no pan-national or nationally accepted marker indicating veteran status across all healthcare services. This presents significant obstacles to determining the healthcare needs of veterans using EHRs. To address this issue, we developed the Military Service Identification Tool (MSIT), using an iterative two-staged approach. In the first stage, a Structured Query Language approach was developed to identify veterans using a keyword rule-based approach. This informed the second stage, which was the development of the MSIT using machine learning, which, when tested, obtained an accuracy of 0.97, a positive predictive value of 0.90, a sensitivity of 0.91, and a negative predictive value of 0.98. To further validate the performance of the MSIT, the present study sought to verify the accuracy of the EHRs that trained the MSIT models. To achieve this, we surveyed 902 patients of a local specialist mental healthcare service, with 146 (16.2%) being asked if they had or had not served in the Armed Forces. In total 112 (76.7%) reported that they had not served, and 34 (23.3%) reported that they had served in the Armed Forces (accuracy: 0.84, sensitivity: 0.82, specificity: 0.91). The MSIT has the potential to be used for identifying veterans in the UK from free-text clinical documents and future use should be explored. [ABSTRACT FROM AUTHOR]

BACKGROUND: We developed a 29-item Questionnaire, Long-term Unmet Needs in MS (LUN-MS) to identify the unmet needs of people with multiple sclerosis (pwMS). OBJECTIVE: To assess acceptability, test-retest reliability, internal consistency, and validity of the LUN-MS. MeThodS: Participants completed the LUN-MS and MSIS-29 twice, four weeks apart. Acceptability was assessed by looking at the response rate in each time point. Reliability was calculated by comparing the response during the two time points using Cohen's weighted kappa. Using principal component analysis, the dimensionality of the questionnaire's items was reduced, to five domains and the internal consistency of each domain was assessed using Cronbach's alpha. Concurrent validity was tested by comparing the total LUN-MS score against MSIS-29 and EQ-5D-3L using Pearson's product-moment correlation coefficient. RESULTS: Among 88 participants, rate of completion at time points-1 and 2 was 96 and 80% respectively. Test-retest reliability for individual items was between fair to near-perfect (weighted Cohen's kappa 0.39-0.81). The unmet needs could be divided into five internally consistent domains (Cronbach's alpha 0.83-0.74): neuropsychological, ambulation, physical, interpersonal relationship and informational. Concurrent validity with MSIS-29 (r = 0.705, P < .001) and EQ-5D-3L (r = 0.617, P < .001) were good. CONCLUSION: LUN-MS is a reliable, valid, and acceptable tool to identify the unmet needs of pwMS. [ABSTRACT FROM AUTHOR]

Background: Reiki is a biofield therapy which is based on the explanatory model that the fields of energy and information of living systems can be influenced to promote relaxation and stimulate a healing response. Objective: To conduct a pragmatic within-subject pilot trial of a remote Reiki program for frontline healthcare workers' health-related symptoms during the COVID-19 pandemic. Methods: Healthcare professionals in the UK (eg, physicians, nurses, and paramedics) were eligible to sign up for a distance Reiki program and were also invited to participate in the research study. Eight Reiki practitioners simultaneously gave each participant Reiki remotely for 20 minutes on 4 consecutive days. Feasibility of the research was assessed, including recruitment, data completeness, acceptability and intervention fidelity, and preliminary evaluation of changes in outcome measures. Participants' stress, anxiety, pain, wellbeing, and sleep quality were evaluated with 7-point numerical rating scales. Measures were completed when signing up to receive Reiki (pre) and following the final Reiki session (post). Pre and post data were analyzed using Wilcoxon signed ranks tests. Results: Seventy-nine healthcare professionals signed up to receive Reiki and took the baseline measures. Of those, 40 completed post-measures after the 4-day intervention and were therefore included in the pre-post analysis. Most participants were female (97.5%), and the mean age was 43.9 years old (standard deviations = 11.2). The study was feasible to conduct, with satisfactory recruitment, data completeness, acceptability, and fidelity. Wilcoxon signed ranks tests revealed statistically significant decreases in stress (M = 2.33; P < .001), anxiety (M = 2.79; P < .001) and pain (M = .79; P < .001), and significant increases in wellbeing (M = 1.79; P < .001) and sleep quality (M = 1.33; P = .019). Conclusions: The Reiki program was feasible and was associated with decreased stress, anxiety and pain, and increased wellbeing and sleep quality in frontline healthcare workers impacted by the COVID-19 pandemic. [ABSTRACT FROM AUTHOR]

Background: Healthcare-associated infections (HCAIs) pose a significant threat to the health and safety of patients, staff, and visitors. Infection prevention and control (IPC) teams play a crucial role in ensuring that systems and processes are in place to keep everyone safe within the healthcare environment. Aim: The aim of this study was to identify components of infection prevention services, priorities, indicators of successes and how they are measured, and facilitators and barriers to success. Methods: A s urvey questionnaire was developed and circulated to infection prevention leaders and managers. Findings/results: Seventy IPC leaders/managers completed the survey. Participants were responsible for a range of IPC services within and across healthcare organisations, with significant variations to IPC delivery components. Additionally, a range of budget availability was reported. Several IPC service requirements were considered core work of IPC teams, including providing IPC advice and support, surveillance and audit and education and training. Discussion: An optimal IPC service needs to be in place to ensure HCAIs are minimised or prevented. In a post pandemic era, this is more important than ever before. This is also as crucial for the health and wellbeing of those working in IPC, who have endured unprecedented demand for their services during the pandemic. [ABSTRACT FROM AUTHOR]

The wellbeing of care home staff and the need to support them at work was highlighted with devastating clarity by the COVID pandemic. This small study explores what online and at work wellbeing resources were available to frontline care home workers during the first wave of the pandemic. A mixed methods study was undertaken May and July 2020. A multi-disciplinary team undertook a rapid review of online wellbeing information and resources relevant specifically to the care home sector and its non-nurse staff. Qualitative data comprised of digital recordings of semi-structured interviews with six care home managers of five care homes, and an online survey sent to 55 Scottish care homes with a response rate of 18%. Five overarching lessons were identified from the data. The first two ('managing information overload' and 'medium not appropriate for the message') relate to the awareness and use of the online wellbeing resources by frontline care workers. Three others ('visible and supportive leadership', 'building team camaraderie' and 'maintaining a focus on wellbeing beyond a crisis response') highlight the in-house, practice-based issues of supporting the wellbeing of staff. Although small, the findings from this study are of relevance and use by those in the UK and beyond working develop and sustain more effective ways to support and retain of this vital workforce. [ABSTRACT FROM AUTHOR]

Background: Compared with the general population, autistic adults experience higher rates of physical and mental health conditions, premature morbidity and mortality, and barriers to health care. A health check for autistic people may improve their health outcomes. Aim: To establish the views of autistic people towards a primary care health check for autistic people. Design & setting: Cross-sectional questionnaire study in England and Wales. Method: A questionnaire was sent to autistic adults with physical health conditions in England and Wales. A total of 458 people (441 autistic adults and 17 proxy responders) completed the questionnaire. Results: Most responders (73.4%, n = 336) thought a health check is needed for all autistic people. Around half of the participants thought a health check should be offered from childhood and the health check appointment should last between 15 and 30 minutes. Autistic people were positive about providing primary care staff with contextual information regarding their health and the reasonable adjustments they would like before their health check appointment. Training about autism and the health check was considered important, alongside adequate time for discussions in the health check appointment (all by over 70% of responders). The clinician's autism knowledge, seeing a familiar clinician, environmental adaptations, appropriate information, and accessible appointments were considered particularly important in making a health check accessible. Conclusion: Autistic people and relatives were supportive of a primary care health check for autistic people. Information gathered was used to support the design of a primary care health check for autistic adults. [ABSTRACT FROM AUTHOR]

Background: Relatives of people with psychosis or bipolar disorder experience high levels of distress but are typically not offered the support they need. Online peer forums may offer a solution, but knowledge about who uses them, how, and why is limited. This study reported on online forum use during the Relatives Education and Coping Toolkit (REACT) trial. Objective: We aimed to report who used the forum and why; how sociodemographic factors are associated with participation; the relationship among frequency, type of use, and outcomes; and how the forum was used. Methods: The relationships between key sociodemographic characteristics, levels of forum use, and distress were statistically analyzed. We used thematic and semantic analyses to understand the reasons for relatives joining the forum and the key topics initiated by them. We also used the University Centre for Computer Corpus Research on Language Semantic Analysis System to compare how relatives and REACT supporters (moderators) used the forum. Results: A total of 348 participants with full forum use data from REACT were included in this study. The forum was accessed by 59.4% (207/348) of the relatives across the entire age range, with no significant associations between sociodemographic factors and forum participation, or between level or type of use and relatives' distress levels. Relatives joined the forum primarily to find people in similar circumstances, express concerns, and talk about stressful events. Relatives were most concerned about recent events, negative emotions linked to caring, experiences of conflict or threat, and concerns about suicide. These posts underscored both the challenges the relatives were facing and the fact that they felt safe sharing them in this context. Conclusions: Although only a proportion of REACT participants engaged actively with its forum, they were widely distributed across age and other sociodemographic groupings. Relatives used the forum for information, support, and guidance and to offer detailed information about their experiences. The topics raised highlighted the burden carried by relatives and the potential value of easy-access, moderated, peer-supported forums in helping relatives to manage the challenges they faced. [ABSTRACT FROM AUTHOR]

Background: The first wave of lockdown measures to control the COVID-19 pandemic in the UK resulted in suspension of 'non-essential' services, including contraceptive care. Aim: To examine women's perceptions and experiences of contraceptive care in the UK during the first lockdown. Design & setting: A cross-sectional survey during the lockdown period from March-June 2020. Method: An online questionnaire was designed asking women aged 16-54 years their experiences of contraceptive care during lockdown. Questions were based on Maxwell's evaluation framework on access, acceptability, relevance or appropriateness, and equity. It was promoted on social media from 27 May-9 June 2020. A descriptive analysis was conducted of quantitative data and thematic analysis of free-text data. Results: In total, 214 responses were analysed. General practice was the source of contraception for 43.4% (n = 49) and 52.3% (n = 34) of responders before and during the lockdown, respectively. The study found 55.1% (n = 118) of responders, including regular and new users, were uncertain where or how to get contraception during the pandemic. Responders reported reduced access to contraception during lockdown, and some thought sexual health clinics and general practices were closed. Remote consultations and electronic prescriptions facilitated contraceptive access for some responders. Long-acting reversible contraception (LARC) was unavailable in some areas owing to restrictions, and alternatives were not acceptable to those who used methods for non-contraceptive benefits to treat medical conditions; for example, menorrhagia. Conclusion: The study highlighted the need for better information and signposting for contraception during lockdown. Contraception, including LARC, should be reframed as an essential service with robust signposting for pandemic planning and beyond. [ABSTRACT FROM AUTHOR]

The aim of the current study was to examine adolescents' goals when coping with pain and map these goals to the cognitive and emotional profiles of both adolescent and their parent. 17 adolescents (11‐16 years) and their parents participated in a cohort study of Juvenile Idiopathic Arthritis (JIA); the adolescents, took part in a two‐part interview (about their pain perceptions and about a recent pain experience) and the parents completed an open‐ended qualitative survey. The three datasets were analysed following a qualitative framework approach. A coping framework was developed and cognitive and emotional profiles for both adolescent and parent were mapped back to the framework. The overall goal of adolescents was to preserve social identity, by either focusing on maintaining a "normal" lifestyle (sub‐coping goal one) or managing the pain (sub‐coping goal two). Across these two sub‐coping goals, the adolescents held similar cognitive profiles (beliefs about timeline, consequences, control) but different emotional profiles such as feeling fine/happy compared with feeling angry and frustrated. Conversely, the parents' cognitive and emotional profiles were mapped back to the two groups and found that their beliefs were different across the two sub‐coping goals but had similar emotional profiles across the two groups such as worry. Both the adolescents' emotional representations and parental cognitive profiles seem to be related to how the adolescent perceives a pain event, deals with the pain, and the overall coping goal of the adolescent. Findings are suggestive that parental pain beliefs influence the adolescents' pain representations and their coping goals but are also driven by adolescents' emotions. Further work on these potential pathways is needed. Family interventions should be designed, targeting coping goals taking into consideration the importance of emotions for adolescents and parental pain beliefs. [ABSTRACT FROM AUTHOR]

Background Increasing the price of alcohol reduces alcohol consumption and harm. The role of food complementarity, transaction costs and inflation on alcohol demand are determined and discussed in relation to alcohol price policies. Methods UK Biobank (N  = 502,628) was linked by region to retail price quotes for the years 2007 to 2010. The log residual food and alcohol prices, and alcohol availability were regressed onto log daily alcohol consumption. Model standard errors were adjusted for clustering by region. Results Associations with alcohol consumption were found for alcohol price (β  = −0.56, 95% CI, −0.92 to −0.20) and availability (β  = 0.06, 95% CI, 0.04 to 0.07). Introducing, food price reduced the alcohol price consumption association (β  = −0.26, 95% CI, −0.50 to −0.03). Alcohol (B  = 0.001, 95% CI, 0.0004 to 0.001) and food (B  = 0.001, 95% CI, 0.0005 to 0.0006) price increased with time and were associated (ρ  = 0.57, P  < 0.001). Conclusion Alcohol and food are complements, and the price elasticity of alcohol reduces when the effect of food price is accounted for. Transaction costs did not affect the alcohol price consumption relationship. Fixed alcohol price policies are susceptible to inflation. [ABSTRACT FROM AUTHOR]

Background: Childhood asthma is an important unmet need. To date, patient-reported outcome measures (PROMs) for children with asthma have used a combination of caregiver or proxy-reported and self-reported measures. No comprehensive measure is available to assess the severity and impact of daytime and nighttime asthma symptoms and rescue medication use for self-completion by children aged 6–11 years. This study aimed to develop a novel, interactive, electronic Pediatric Asthma Symptom Diary (ePASD) measuring self-reported key symptom severity and proximal impacts of asthma in young children with varying reading ability and disease severity, consistent with US Food and Drug Administration (FDA) PRO guidance and the International Society for Health Economics and Outcomes Research (ISPOR) good research practices. Methods: A targeted literature review and clinician interviews were undertaken to characterize symptoms and impacts experienced by children with mild-to-severe asthma. Concept elicitation interviews (CEIs) were conducted with 44 children and their caregivers (30 US; 14 UK). Following item and digital application development, the ePASD was assessed for relevance, understanding, and interpretability through cognitive debriefing interviews (CDIs) with 21 US children. Face validity/translatability assessments were also performed. Results: Key measurement concepts included cough, wheeze, difficulty breathing, chest tightness/discomfort, nighttime awakening, and daytime activity limitations. Concept saturation was reached during CEIs for primary asthma-related daytime and nighttime symptoms and core impacts. Most CDI participants found the ePASD items clear, understandable, and comprehensive. Standardized training is anticipated to facilitate reliable child self-report. Conclusion: The ePASD, a novel PROM for children aged 6–11 years with asthma, uses an innovative multimedia approach and has been developed in accordance with FDA PRO guidance and ISPOR good research practices, directly capturing the child's self-reported asthma symptoms, impacts on daily activities and nighttime awakening, and rescue medication use. [ABSTRACT FROM AUTHOR]

Objectives: Turner syndrome (TS) is a rare sex chromosome aneuploidy, with an incidence of four in 10,000 new-born girls. TS is often associated with impaired social communication skills, but the extent to which these are attributable to Autism Spectrum Disorders (ASD) is uncertain. We made standardized assessments of the mental health and associated neurodevelopmental disorders in children and adolescents with TS and report on the prevalence of concurrent conditions. Methods: Our sample comprised 127 girls with TS, 5–19 years of age. We obtained reports of their mental health from a combination of diagnostic interview (the Development and Wellbeing Assessment (DAWBA)), from the Strengths and Difficulties Questionnaire (SDQ) and from the Social Responsiveness Scale (SRS-2). Sources of information included parents, teachers and self-reports. The prevalence of mental health disorders in this sample was compared with age/sex matched national English data from typical controls. Results: Most individuals with TS (83%) had experienced significant social communication difficulties and nearly one in four (23%) met diagnostic criteria for ASD on the DAWBA. One-third (34%) had at least one mental health or neurodevelopmental condition, and those girls with an ASD were at a greater risk of a co-occurring emotional disorder and/or attention deficit hyperactivity disorder (ADHD). Conclusion: Children and adolescents with TS are substantially more likely to meet criteria for ASD than their typically developing peers. Our finding has clinical implications for appropriate behavioural management from preschool through to adolescence. [ABSTRACT FROM AUTHOR]