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Support for school-age children with speech, language and communication needs (SLCN) usually takes place within the school setting. Successful outcomes for children with SLCN rely on effective collaborative working between speech and language therapists (SLTs), school staff and families. We need to understand the current evidence regarding the joint working practices, relationships and collaboration experiences of SLT and teaching staff within mainstream primary schools, in order to identify whether sufficient research exists for a systematic review within this field, and to inform practice. The purpose of this scoping review was to identify what research currently exists regarding collaboration, roles and relationships of SLTs and teaching staff within mainstream UK primary schools, and clarify the nature, participants and concepts described within this literature. A scoping review framework was used, consisting of identification of the review objectives, identification of relevant studies, study selection and iterative searches, data charting and reporting of the results. Information regarding research question, participants, data collection and analysis and terms used for key concepts was extracted. This scoping review identified 14 papers, however, collaboration was the primary focus of only 5 of these. Clarity and perceptions of roles were key themes within six of the papers. Whilst facilitators and barriers to collaboration are discussed in all 14 papers, only 4 studies aimed to investigate barriers and facilitators. Teaching assistant (TA) views are underrepresented within the research. Drawing conclusions from the body of research is challenging due to the varied ways in which the key concept 'collaboration' is used. Currently, there is insufficient literature to carry out a systematic review. This scoping review highlights the need for research that considers collaboration within the complex social network of school staff (including TAs) and SLTs, in order to ensure that future guidance is rooted in research. [ABSTRACT FROM AUTHOR]

Many people living with dementia are 'on the margins', not accessing services and support, despite policy and care advancements. The COVID-19 pandemic exacerbated this, with the closure of face-to-face support during lockdowns in the UK and globally. The aim of the 'Beyond the Margins' project was to develop, implement, and evaluate a face-face programme of support with, by and for people with direct experience of dementia who are on the margins of existing services and support. In March 2020 the project was interrupted by the outbreak of the COVID-19 pandemic and it changed to an online format. The three-phase participatory action research project included 40 people living with dementia, 26 care partners and 31 health and social care practitioners. A seven-week online personal development programme called Getting On with Life (GO) was developed, delivered, and evaluated. This paper focuses on the participatory approaches used to develop and implement the GO programme, and the resulting aspects of its approach to facilitation and content. Key features include the GO Programme's principles of providing a safe and a respectful space, and the programme's values of: Everyone who comes already knows things, can learn things and can teach things; Doing things 'with' each other, rather than 'for' or 'to' each other; Personalised goals—led by the needs of participants rather than an imposed agenda. A key finding was the importance of developing post-diagnostic programmes as a 'sandwich', providing a safe space for learning that is preceded by understanding pathways to access the programme and followed by explicit consideration of the next steps in increasing social engagement. [ABSTRACT FROM AUTHOR]

The current study explored the role of pre-existing and pandemic-time child, family or environmental factors in the presentation of mental health symptoms of autistic youth and their parents during the pandemic. Participants were parents/carers of autistic children (Autism Spectrum Treatment and Resilience Cohort, N = 67, M age = 9 years) and adolescents (QUEST cohort, N = 112, M age = 17 years). Parents completed an online survey that asked about child and parental mental health, infection experience, and changes to education arrangements, family life, housing and finances during the pandemic. Pre-existing measures of mental health, autism and adaptive functioning were also utilised. More engagement and enjoyment in education provision and going outside was associated with better child and parental mental health. In multivariate multiple linear regression models, more pre-existing attention deficit hyperactivity disorder symptoms were associated with more behavioural/attention deficit hyperactivity disorder symptoms during the pandemic in the pre-adolescent cohort, and with greater emotional symptoms in the adolescent cohort. More pre-existing parental mental health problems were associated with more parental mental health symptoms during the pandemic in both cohorts. Knowledge of pre-existing mental health and pandemic-related stressors may help care planning. Encouraging engagement and enjoyment in education and promoting physical exercise are key intervention targets. Ensuring access to attention deficit hyperactivity disorder medication and support is important, especially if this is managed jointly across school and home. What is already known about the topic: The COVID-19 pandemic and the associated restrictions impacted all of society. There is emerging evidence showing a range of impacts on autistic children and young people and their families. Further research that looks at how individuals coped during the pandemic while considering how they were doing before the pandemic is needed. What this paper adds: This article explores whether how well autistic youth were doing before the pandemic influenced how they coped during the pandemic. It also looked at how well their parents were doing during the pandemic and whether any pre-pandemic factors influenced how they coped. Samples of both primary-school-aged autistic children and autistic teenagers and their parents were surveyed to answer these questions. More engagement and enjoyment in education provision during the pandemic and getting outside more were linked with better child and parental mental health during the pandemic. More attention deficit hyperactivity disorder before the pandemic was linked with more attention deficit hyperactivity disorder and behavioural problems during the pandemic in primary-school-aged autistic children, and more emotional problems during the pandemic in autistic teenagers. Parents with more mental health problems during the pandemic had more mental health problems before the pandemic. Implications for practice, research or policy: Encouraging engagement and enjoyment in education and promoting physical exercise are key intervention targets. Ensuring access to attention deficit hyperactivity disorder medication and support is important, especially if this is managed jointly across school and home. [ABSTRACT FROM AUTHOR]

Forecasts predict a growing shortage of skilled nursing staff in countries worldwide. Nurse migration is already a common strategy used to address nursing workforce needs. Germany, the UK, and Australia are reviewed here as examples of destination countries for nurse migrants. Agreements exist between countries to facilitate nurse migration; however, it is not evident how nurse migrants have contributed to data on which these arrangements are based. We examined existing primary research on nurse migration, including educational needs and initiatives to support policymakers', stakeholders', and health professions educators' decisions on measures for ethical and sustainable nurse migration. We conducted a rapid evidence assessment to review available empirical research data which involved, was developed with, or considered migrant nurses to address the research question: what are the findings of research that directly involves migrant nurses in producing primary research data? A total of 56 papers were included. Four main themes were identified in this research data: Research does not clearly define what is meant by the term migrant nurses; discrimination is often reported by migrant nurses; language and communication competencies are important; and structured integration programs are highly valued by migrant nurses and destination healthcare employers. Migrant nurses continue to experience discrimination and reduced career opportunities and therefore should be included in research about them to better inform policy. Structured integration programs can improve the experience of migrant nurses by providing language support (if necessary), a country-specific bridging program and help with organisational hurdles. Not only researching migrant nurses but making them active partners in research is of great importance for successful, ethical, and sustainable migration policies. A broader evidence base, especially with regard to the views and experiences of migrant nurses and their educational support needs, should be promoted to make future immigration policy more needs-based, sustainable and ethically acceptable. [ABSTRACT FROM AUTHOR]

Background: The Health of the Nation Outcomes Scales for people with Learning Disabilities (HoNOS-LD) is an 18-item measure which provides a structured and standardized approach to rating various clinical and psychosocial outcomes and has been in use nationally since 2002. Aims: To revise and improve the HoNOS-LD's utility in contemporary intellectual disability (ID) services whilst retaining its original objectives and five-point severity ratings. Method: ID clinicians were invited to complete an online survey, rating each item on the existing measure for being fit for purpose, identifying issues and suggesting improvements based on their experience of using the HoNOS-LD in practice. Scales were then assessed and revised sequentially; survey responses were used to inform discussion and revisions to the HoNOS-LD by the Advisory Board. Results: A total of 75 individuals replied. Respondents had used HoNOS-LD for an average of 8.0 years (S.D. 5.28 years) and 88% found the scale to be useful in their practice. On average, respondents used HoNOS-LD ratings to inform care 42.4% of the time (S.D. 33.5%). For each scale there was a significant negative correlation between the percentage of positive/very positive respondent ratings and the number of changes proposed. Common changes included simplifying terms, reducing ambiguity and replacing anachronistic language. Conclusion: The changes outlined in this paper are based on the advisory group's expert consensus. These changes are intended to improve reliability and validity but now need empirical testing as well as review by service users. [ABSTRACT FROM AUTHOR]

Background: Access to affordable, appropriate housing is one of the key social determinants of health, affecting well-being across the lifecourse. However, beyond a recognition that housing quality is linked to place of death, little is known about the ways in which housing status impacts social, emotional, and practical aspects of dying and bereavement. Method: The Checking Out project is a qualitative study aiming to explore the ways in which socio-economic status impacts people's experiences of, and attitudes towards, death, dying, and bereavement in the United Kingdom. Qualitative interviews were carried out with 14 bereaved individuals with experience of poverty at end of life or in bereavement, and 15 professionals supporting individuals in low-income communities. Interviews were conducted via phone/video call, and data include experiences of end of life and bereavement both before and during the pandemic. Transcripts were examined using thematic analysis. Results: Housing emerged as an important factor affecting people's experiences, with 7 of the 14 bereaved individuals and all except 1 of the professionals discussing housing-related issues. Participants described ways in which unsuitable housing and housing insecurity impacted practical aspects of dying but also emotional and social well-being at end of life. Housing-related issues affected both patients and their families, though families found it difficult to air these concerns when their relative was dying. Conclusion: The paper demonstrates how trusted professionals are able to advocate or address the issues faced by bereaved individuals and suggests implications for policy and practice. A greater awareness of the potential impact of housing status across public services, including healthcare practitioners, welfare support, and housing providers, could better support patients and practitioners to address these issues proactively. Housing providers and policy-makers should be included as key partners in collaborative public health approaches to palliative care. [ABSTRACT FROM AUTHOR]

Introduction: Successful adoption of POCTs (Point-of-Care tests) for COVID-19 in care homes requires the identification of ideal use cases and a full understanding of the contextual and usability factors that affect test results and minimise biosafety risks. This paper presents a scoping-usability and test performance study of a microfluidic immunofluorescence assay for COVID-19 in care homes. Methods: A mixed-methods evaluation was conducted in four UK care homes to scope usability and to assess the agreement with qRT-PCR. A dry run with luminescent dye was conducted to explore biosafety issues. Results: The agreement analysis was conducted on 227 asymptomatic participants (159 staff and 68 residents) and 14 symptomatic participants (5 staff and 9 residents). Asymptomatic specimens showed 50% (95% CI:1.3%−98.7%) positive agreement and 96% (95% CI: 92.5%−98.1%) negative agreement with overall prevalence and bias-adjusted Kappa (PABAK) of 0.911 (95% CI: 0.857−0.965). Symptomatic specimens showed 83.3% (95% CI: 35.9%−99.6%) positive agreement and 100% (95% CI: 63.1%−100%) negative agreement with overall prevalence and bias-adjusted Kappa (PABAK) of 0.857 (95% CI: 0.549−1). The dry run highlighted four main sources of contamination that led to the modification of the standard operating procedures. Simulation post-modification showed no further evidence of contamination. Conclusion: Careful consideration of biosafety issues and contextual factors associated with care home are mandatory for safe use the POCT. Whilst POCT may have some utility for ruling out COVID-19, further diagnostic accuracy evaluations are needed to promote effective adoption. [ABSTRACT FROM AUTHOR]

Many people living with dementia have difficulties at mealtimes, which can result in serious complications for physical and mental health, leading to hospital admissions and even death. However, current training in mealtime care for staff working with this population has been found to be poorly reported, with variable effectiveness. It is essential that care home staff are able to provide good care at mealtimes. This study used ethnography to explore current practice in mealtime care for this population, identify good practice, and understand the factors influencing mealtime care. Approximately 28 h of mealtime observations were conducted in two UK care homes with diverse characteristics. Observations focused on interactions between care staff and residents living with dementia. Twenty-five semi-structured interviews were carried out with care home staff, family carers, and visiting health and social care professionals, to explore mealtime care from their perspectives. A constant comparative approach was taken, to probe emergent findings and explore topics in greater depth. Key thematic categories were identified, including: tensions in mealtime care; the symbolic nature of mealtime care; navigating tensions via a person-centred approach; contextual constraints on mealtime care; and teamwork in mealtime care. The findings indicated that a person-centred approach helps carers to find the right balance between apparently competing priorities, and teamwork is instrumental in overcoming contextual constraints. This evidence has contributed to development of a training intervention for care home staff. Future research should investigate the feasibility of mealtime care training in care homes. [ABSTRACT FROM AUTHOR]

Introduction: Parent/carers of disabled children want timely and personalized support. Research suggests that technology may address some limitations associated with traditional methods of communication with therapists (e.g. letter, telephone). This exploratory study examined United Kingdom (UK) parents and carers views on the use of digital technology (i.e. computers/phones) in supporting their child and the potential for its greater use in the care of children with complex needs. Methods: An online survey was distributed via special schools and support forums/networks. Questions explored use of and attitudes to digital technology in the care of children with complex needs. Descriptive statistical analyses and content analyses were undertaken on the data. Results: Respondents were 43 parents/carers whose children used rehabilitation services prior to the COVID-19 pandemic. The majority used digital technology frequently to support their child and saw the potential for greater use in rehabilitation services – provided this was not at the expense of in-person therapist contact. Conclusion: Parents and carers held positive views of digital technology as a tool to support their child and enhance rehabilitation services. Recommendations include regular service consultation on parental/child attitudes to digital service delivery and longitudinal studies to assess related health outcomes. [ABSTRACT FROM AUTHOR]

Objective: Feasibility test a co-developed intervention based on Acceptance and Commitment Therapy to support psychological adjustment post-stroke, delivered by a workforce with community in-reach. Design: Observational feasibility study utilising patient, carer, public involvement. Setting: Online. UK. Participants: Stroke survivors with self-reported psychological distress 4 + months post-stroke. Interventions: The co-developed Wellbeing After Stroke (WAterS) intervention includes: 9-weekly, structured, online, group sessions for stroke survivors, delivered via a training programme to upskill staff without Acceptance and Commitment Therapy experience, under Clinical Psychology supervision. Main measures: Feasibility of recruitment and retention; data quality from candidate measures; safety. Clinical and demographic information at baseline; patient-reported outcome measures (PROMs) via online surveys (baseline, pre- and post-intervention, 3 and 6 months after intervention end) including Mood (hospital anxiety and depression scale (HADS)), Wellbeing (ONS4), Health-Related Quality of Life (EQ5D5L), Psychological Flexibility (AAQ-ABI) and Values-Based Living (VQ). Results: We trained eight staff and recruited 17 stroke survivors with mild-to-moderate cognitive and communication difficulties. 12/17 (71%) joined three intervention groups with 98% attendance and no related adverse events. PROMS data were well-completed. The HADS is a possible future primary outcome (self-reported depression lower on average by 1.3 points: 8.5 pre-group to 7.1 at 3-month follow-up; 95% CI 0.4 to 3.2). Conclusion: The WAterS intervention warrants further research evaluation. Staff can be trained and upskilled to deliver. It appears safe and feasible to deliver online to groups, and study recruitment and data collection are feasible. Funding has been secured to further develop the intervention, considering implementation and health equality. [ABSTRACT FROM AUTHOR]

Objectives: Human papillomavirus (HPV) primary testing for cervical screening is being implemented around the world. We explored HPV awareness, and knowledge about primary screening in Great Britain (England, Scotland and Wales), where it has been in place for several years, ahead of extended screening intervals being implemented in England. Setting/Methods: Women aged 18–70 (n = 1995) were recruited by YouGov from their online panel in August 2022. The weighted sample (n = 1930) was population-representative by age, region, education and social grade. We measured HPV awareness, knowledge (excluding those unaware of HPV) using eight true/false items, and understanding of the role of HPV testing in cervical screening. Results: Overall, 77.6% (1499/1930) of women were aware of HPV. When asked to identify the statement describing how cervical screening works, only 12.2% (236/1930) correctly selected the statement reflecting HPV primary screening (13.5% (194/1436) in screening-eligible women). Excluding those unaware of HPV, most participants had heard about the virus in the context of cervical screening (981/1596; 61.5%) or HPV vaccination (1079/1596; 67.6%). Mean knowledge score was 3.7 out of 8 (SD = 2.2) in this group. Most knew that an HPV-positive result does not mean a woman will definitely develop cervical cancer (1091/1499; 72.8%) but far fewer were aware of the long timeline for HPV to develop into cervical cancer (280/1499; 18.7%). Conclusions: Only three-quarters of women in Britain are aware of HPV, and knowledge of primary screening is very low, even among screening-age women. This points to continued need for awareness-raising campaigns to ensure informed choice about screening and mitigate public concern when screening intervals are extended. [ABSTRACT FROM AUTHOR]

Background: Delirium is a serious neuropsychiatric syndrome with adverse outcomes, which is common but often undiagnosed in terminally ill people. The 4 'A's test or 4AT (www.the4AT.com), a brief delirium detection tool, is widely used in general settings, but validation studies in terminally ill people are lacking. Aim: To determine the diagnostic accuracy of the 4AT in detecting delirium in terminally ill people, who are hospice inpatients. Design: A diagnostic test accuracy study in which participants underwent the 4AT and a reference standard based on the fifth edition of the Diagnostic and Statistical Manual of Mental Disorders. The reference standard was informed by Delirium Rating Scale Revised-98 and tests assessing arousal and attention. Assessments were conducted in random order by pairs of independent raters, blinded to the results of the other assessment. Setting/participants: Two hospice inpatient units in Scotland, UK. Participants were 148 hospice inpatients aged ⩾18 years. Results: A total of 137 participants completed both assessments. Three participants had an indeterminate reference standard diagnosis and were excluded, yielding a final sample of 134. Mean age was 70.3 (SD = 10.6) years. About 33% (44/134) had reference standard delirium. The 4AT had a sensitivity of 89% (95% CI 79%–98%) and a specificity of 94% (95% CI 90%–99%). The area under the receiver operating characteristic curve was 0.97 (95% CI 0.94–1). Conclusion: The results of this validation study support use of the 4AT as a delirium detection tool in hospice inpatients, and add to the literature evaluating methods of delirium detection in palliative care settings. Trial registry: ISCRTN 97417474. [ABSTRACT FROM AUTHOR]

Objective: Patients with a combination of long-term physical health problems can face barriers in obtaining appropriate treatment for co-existing mental health problems. This paper evaluates the impact of integrating the improving access to psychological therapies services (IAPT) model with services addressing physical health problems. We ask whether such services can reduce secondary health care utilization costs and improve the employment prospects of those so affected. Methods: We used a stepped-wedge design of two cohorts of a total of 1,096 patients with depression and/or anxiety and comorbid long-term physical health conditions from three counties within the Thames Valley from March to August 2017. Panels were balanced. Difference-in-difference models were employed in an intention-to-treat analysis. Results: The new Integrated-IAPT was associated with a decrease of 6.15 (95% CI: −6.84 to −5.45) [4.83 (95% CI: −5.47 to −4.19]) points in the Patient Health Questionnaire-9 [generalized anxiety disorder-7] and £360 (95% CI: –£559 to –£162) in terms of secondary health care utilization costs per person in the first three months of treatment. The Integrated-IAPT was also associated with an 8.44% (95% CI: 1.93% to 14.9%) increased probability that those who were unemployed transitioned to employment. Conclusions: Mental health treatment in care model with Integrated-IAPT seems to have significantly reduced secondary health care utilization costs among persons with long-term physical health conditions and increased their probability of employment. [ABSTRACT FROM AUTHOR]

The Covid-19 pandemic and associated lockdowns provided opportunities to engage and reconnect with nature, with many people noting associated benefits to well-being. Research from the pandemic period has largely focused on the way neurotypical or general populations experienced nature; less is known about how autistic people used nature to support well-being during this time. In this qualitative survey study of 127 autistic adults in the United Kingdom, we used reflexive thematic analysis of text box responses to develop two themes: respite in nature and connecting amid widespread disconnection. For some autistic adults during the pandemic, nature provided physical distance from others or from crowded homes, enabling them to use nature to experience relief from stress. In addition, some participants felt more psychologically connected to nature itself during the pandemic, while for others, nature served as a way of connecting with others during a potentially isolating time. These findings have implications for autistic people and their families and carers who may want to seek out nature-based activities to support well-being in the wake of the pandemic. The Covid-19 pandemic and associated lockdowns provided opportunities to spend time in nature, with many people reporting that this benefitted their well-being. However, existing research from the pandemic period has focused on the way general populations experienced nature; less is known about how autistic people used nature to support their well-being during the pandemic. We created a survey that invited autistic adults living in the United Kingdom to reply to text box questions. A total of 127 people responded to our survey; we analysed their responses using a method called reflexive thematic analysis and developed themes based on patterns among all the responses. We developed two themes: respite in nature and connecting amid widespread disconnection. For some autistic adults during the pandemic, nature provided physical distance from others or from crowded homes, which helped them reduce their stress. In addition, some participants felt more psychologically connected to nature itself during the pandemic, while for others, nature served as a way of connecting with others during a potentially isolating time. These findings are important for autistic people and their families and carers who may want to seek out nature-based activities to support well-being in the wake of the pandemic. [ABSTRACT FROM AUTHOR]

The National Health Service Staff Survey is an annual, England-wide survey of staff employed by National Health Service organisations. It is administered using online and paper questionnaires. Response rates have fallen over time, while the proportion of staff receiving the online version – which historically has a lower response rate – has increased. Three interventions to increase online response were tested using an experimental design: more reminders; change of signatory to the invitation to participate and concise messaging in the invitation. Thirteen thousand staff members in five National Health Service trusts received the online survey. Results were analysed using contingency tables and logistic regression to determine the effect of interventions independently and in combination. More reminders improved response by six percentage points (odds ratio 1.33, 95% CI 1.23–1.43) and concise messaging by two percentage points (odds ratio 1.08, 95% CI 1.00–1.17). Change of signatory had no statistically significant effect and neither did any combination of the interventions. Given that costs for the successful interventions were minimal, more reminders in combination with concise messaging are recommended as a strategy to improve online response to the survey. [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]

Many autistic adults experience public stigma and some internalise this stigma with negative effects on their mental health. While efforts to reduce public stigma are paramount, change can be slow, and interventions to prevent internalised stigma may also be needed. Using a mixed methods online survey, we gathered the views of 144 autistic adults and parents/caregivers of autistic people in the United Kingdom on whether a stigma-related support programme for autistic adults is needed and, if so, what it should 'look' like. Quantitative data (summarised descriptively) showed that most participants felt it was important for autistic adults to have support in managing stigma and revealed diverse preferences in terms of programme delivery, underscoring the need for flexibility. Using reflexive thematic analysis, four main themes were identified from the qualitative data: (1) 'We need to change society not autistic people', (2) 'Stigma is difficult to manage alone', (3) 'Focus on positive, practical support', and (4) 'There is no one size fits all approach'. We discuss the important implications our findings have for how future interventions in this area are framed and delivered. Many autistic adults experience public stigma, which refers to negative attitudes and treatment from others. Because of that, some autistic adults may also apply unhelpful beliefs to themselves, which is known as internalised stigma. There is some evidence that both public stigma and internalised stigma are linked to poorer mental health in autistic adults. Clearly, it is crucial to change how society thinks and acts towards autistic people. There are several programmes that are trying to do this. But as change can be slow, support may also be needed to help autistic people cope with and challenge stigma. Using an online survey, we gathered the views of 144 autistic adults and parents/caregivers of autistic people in the United Kingdom on whether a stigma support programme for autistic adults is needed and, if so, what it should 'look' like. Most participants felt it was important for autistic adults to have support in managing stigma because of the harmful effects that stigma has on mental health and the challenges that autistic adults face in disclosing their diagnosis. However, participants were also concerned that such a programme could convey the message that autistic people, rather than society, need to change. Participants suggested that the programme should be positive and practical, helping autistic adults to understand and accept themselves, as well as learn context-specific strategies for responding to stigma and/or disclosing their diagnosis. They also stressed that the programme should be flexible and inclusive, recognising that autistic adults have very different needs and preferences. [ABSTRACT FROM AUTHOR]

Background: Over the next two decades, the numbers of people who will need palliative care in the United Kingdom and Ireland is projected to increase. Hospices play a vital role supporting people who require specialist palliative care input through community-based and inpatient palliative care services. Evidence is needed to understand the role of these different services to inform future service development. Objectives: To describe the reasons for admission, and outcomes at the end of the stay, for patients admitted to two hospice inpatient units (IPUs). Design: This was a mixed-methods study using a convergent, parallel mixed-methods design. Methods: We reviewed the case notes of all patients admitted to two hospice inpatient units from July to November 2019; conducted semi-structured interviews with patients and families; as well as brief structured interviews with inpatient unit staff. Results: Two hundred fifty-nine patients were admitted to a hospice IPU, accounting for 276 admissions in total. Overall, 53% were female; median age was 71 years (range: 26–95 years). Most patients (95%) were White British or Scottish, and 95% had a cancer diagnosis. Most patients were admitted from the community, under one-third were admitted from hospital. Most (85%) had previous palliative care involvement. Nearly, half had district nurse support (48%). Worry and anxiety was frequently reported as a reason for admission, alongside physical concerns. Median length of stay was 12 days, and 68% died during their stay. Hospice was recorded as the preferred place of care for 56% of those who died there. Conclusions: Sustained efforts to promote the hospice as place of care for people with conditions other than cancer are needed alongside greater clarity regarding of the role of the hospice IPU, and who would benefit most from IPU support. [ABSTRACT FROM AUTHOR]

Objective: This study describes primary surgical reconstructions performed for children born with a cleft lip and/or palate (CL ± P) in the United Kingdom (UK). Design: Data forms completed at the time of surgery included details on timing, technique, and adjuncts used during the operative period. Demographic data on participants were validated via parental questionnaires. Setting: Data were obtained from the Cleft Collective, a national longitudinal cohort study. Patients: Between 2015 and 2021, 1782 Cleft Collective surgical forms were included, relating to the primary reconstructions of 1514 individual children. Results: The median age at primary cheiloplasty was 4.3 months. Unilateral cleft lips (UCL) were reconstructed with an anatomical subunit approximation technique in 53%, whereas bilateral cleft lips (BCL) were reconstructed with a broader range of eponymous techniques. Clefts of the soft palate were reconstructed at a median age of 10.3 months with an intravelar veloplasty in 94% cases. Clefts of the hard palate were reconstructed with a vomer flap in 84% cases in a bimodal age distribution, relating to reconstruction carried out simultaneously with either lip or soft palate reconstruction. Antibiotics were used in 96% of cases, with an at-induction-only regimen used more commonly for cheiloplasties (P <.001) and a 5 to 7-day postoperative regime used more commonly for soft palatoplasties (P <.001). Perioperative steroids were used more commonly in palatoplasties than cheiloplasties (P <.001) but tranexamic acid use was equivalent (P =.73). Conclusions: This study contributes to our understanding of current cleft surgical pathways in the UK and will provide a baseline for analysis of the effectiveness of utilized protocols. [ABSTRACT FROM AUTHOR]

Background: Advance care planning supports patients to reflect on and discuss preferences for future treatment and care. Studies of the impact of advance care planning on healthcare use and healthcare costs are scarce. Aim: To determine the impact on healthcare use and costs of an advance care planning intervention across six European countries. Design: Cluster-randomised trial, registered as ISRCTN63110516, of advance care planning conversations supported by certified facilitators. Setting/participants: Patients with advanced lung or colorectal cancer from 23 hospitals in Belgium, Denmark, Italy, the Netherlands, Slovenia and the UK. Data on healthcare use were collected from hospital medical files during 12 months after inclusion. Results: Patients with a good performance status were underrepresented in the intervention group (p < 0.001). Intervention and control patients spent on average 9 versus 8 days in hospital (p = 0.07) and the average number of X-rays was 1.9 in both groups. Fewer intervention than control patients received systemic cancer treatment; 79% versus 89%, respectively (p < 0.001). Total average costs of hospital care during 12 months follow-up were €32,700 for intervention versus €40,700 for control patients (p = 0.04 with bootstrap analyses). Multivariable multilevel models showed that lower average costs of care in the intervention group related to differences between study groups in country, religion and WHO-status. No effect of the intervention on differences in costs between study groups was observed (p = 0.3). Conclusions: Lower care costs as observed in the intervention group were mainly related to patients' characteristics. A definite impact of the intervention itself could not be established. [ABSTRACT FROM AUTHOR]

Background: Voluntary and community sector bereavement services are central to bereavement support in the UK. Aim: To determine service providers' perspectives on access to their support before and during the COVID-19 pandemic. Design: Mixed methods study using an explanatory sequential design: (1) Cross-sectional online survey of UK bereavement services; (2) Qualitative interviews with staff and volunteers at selected services. Settings/participants: 147 services participated in the survey; 24 interviews were conducted across 14 services. Results: 67.3% of services reported there were groups with unmet needs not accessing their services before the pandemic; most frequently people from minoritised ethnic communities (49%), sexual minority groups (26.5%), deprived areas (24.5%) and men (23.8%). Compared with before the pandemic, 3.4% of services were seeing more people from minoritised ethnic groups, while 6.1% were seeing fewer. 25.2% of services did not collect ethnicity data. Qualitative findings demonstrated the disproportionate impact of the pandemic on minoritised ethnic communities, including disruption to care/mourning practices, and the need for culturally appropriate support. During the pandemic outreach activities were sometimes deprioritised; however, increased collaboration was also reported. Online provision improved access but excluded some. Positive interventions to increase equity included collecting client demographic data; improving outreach, language accessibility and staff representation; supporting other professionals to provide bereavement support; local collaboration and co-production. Conclusions: Service providers report inequities in access to bereavement support. Attention needs to be paid to identifying, assessing and meeting unmet needs for appropriate bereavement support. Identified positive interventions can inform service provision and research. [ABSTRACT FROM AUTHOR]

Objectives: Within current research, little is known about the long-term outcomes of craniosynostosis. A priority-setting exercise by UK charity Headlines Craniofacial Support identified 2 key questions in this area: (1) What are the long-term physical and psychological effects for individuals with syndromic and non-syndromic craniosynostosis? and (2) Are individuals with craniosynostosis likely to suffer from mental health difficulties, or are they more resilient? The aim of the current study was to conduct an initial investigation of these priority questions. Methods: A comprehensive UK-wide survey consisting of 9 standardized psychological outcome measures and open-ended questions was distributed online. Thirty-six eligible adults (69.4% female) with a mean age of 30.8 years responded to the survey. Participants reported having single suture craniosynostosis (27.8%) or syndromic craniosynostosis (52.8%), with 19.4% being unsure of their diagnosis. Sample means were compared to published norms using independent samples t tests. Qualitative responses were analysed using inductive content analysis. Results: Compared to the general population, participants reported significantly less favorable scores related to appearance concerns, attachment in adult relationships, anxiety, optimism, and resilience. Self-worth, depression, and social anxiety scores were similar to norms. Qualitative responses provided additional insight into participants' satisfaction with appearance, physical health, medical treatment, employment, relationships, and recurrence risks. Few participants had accessed psychological support. Discussion: This preliminary study illustrates the potential long-term implications for individuals with craniosynostosis. Improved treatment protocols are needed to address physical health concerns in adulthood, while dedicated psychological resources are necessary to promote emotional well-being, social confidence, and resilience. [ABSTRACT FROM AUTHOR]

Background: The Cleft Lip Education with Augmented Reality (CLEAR) project centers around the use of augmented reality (AR) in patient leaflets, as a visual means to overcome the "health literacy" gap. This trial followed Virtual Reality (VR CORE) guidelines for VR Phase 2 (Pilot) trials. Methods: Participants included families of children treated for Cleft Lip and Palate at the Royal Hospital for Children, Glasgow. Interventions were AR leaflet or Traditional Leaflet. Objectives were to calculate sample sizes, assess outcome instruments, trial design, and acceptability to patients. Primary outcome measure was Mental Effort Rating Scale, and secondary outcomes were Patient Satisfaction (Visual Analogue Scale), Usefulness Scale for Patient Information Material (USE) scale, and Instructional Materials Motivation Survey (IMMS). Randomization was by block randomization. The trial was single blinded with assessors blinded to group assignment. Results: 12 Participants were randomized, with crossover design permitting analysis of 12 per group. Primary outcome with Mental Effort Rating Scale indicated higher mental effort with Traditional compared to AR Leaflet (4.75 vs 2.00, P =.0003). Secondary outcomes for Satisfaction were Traditional 54.50 versus AR 93.50 (P =.0001); USE scale 49.42 versus 74.08 (P =.0011); and IMMS 112.50 versus 161.75 (P =.0003). Subjective interviews noted overwhelmingly positive patient comments regarding the AR leaflet. Outcome instruments and trial design were acceptable to participants. No harms were recorded. Conclusions: The CLEAR pilot trial provides early evidence of clinical efficacy of AR leaflets in patient education. It is hoped that this will provide a future paradigm shift in the way patient education is delivered. [ABSTRACT FROM AUTHOR]

Introduction: The COVID-19 pandemic placed additional demands and stressors on UK obstetric sonographers, who were required to balance parent safety and service quality, alongside staff safety. Increased pressure can negatively impact a healthcare worker's well-being and the provision of person-centred care. The aim of this study was to explore obstetric sonographers' experiences of performing pregnancy ultrasound scans during the pandemic and to assess the impact on burnout, role satisfaction and clinical practice. Methods: An online, anonymous cross-sectional survey was created to capture sonographers' experience alongside using the Oldenburg Burnout Inventory to evaluate burnout and Clinical Outcomes in Routine Evaluation 10 (CORE-10) to measure psychological distress. Results: Responses were received from 138 sonographers. Of those completing the Oldenburg Burnout Inventory (n = 89), 92.1% and 91.0% met the burnout thresholds for exhaustion and disengagement, respectively. Sonographers with a higher burnout score also perceived that COVID-19 had a greater, negative impact on their practice (p < 0.05). The mean CORE-10 score of 14.39 (standard deviation = 7.99) suggests mild psychological distress among respondents. A significant decrease in role satisfaction was reported from before to during the pandemic (p < 0.001), which was associated with higher scores for burnout and psychological distress (p < 0.001). Change in role satisfaction was correlated with sonographers' perception of safety while scanning during the pandemic (R 2 = 0.148, p < 0.001). Sixty-five sonographers (73.9%) reported they were considering leaving the profession, changing their area of practice or working hours within the next 5 years. Conclusion: Job and context-specific interventions are required to mitigate burnout and its consequences on the workforce and service provision beyond the pandemic. [ABSTRACT FROM AUTHOR]

COVID-19 has posed serious challenges for informal carers living in the UK. This article examines some of the specific challenges facing carers and the resources they used to manage them throughout the first UK lockdown. We used a framework approach to analyse naturalistic, longitudinal data from 30 carers taking part in 96 of Mobilise's daily Virtual Cuppas between March and July 2020. We found that lack of information and social restrictions cumulatively impacted carers' sense of certainty, control and motivation. This took an emotional toll on the carers, leading to exhaustion and burden. However, carers quickly established new routines and used humour and self-care to actively manage their wellbeing. Carers received support but also provided it to those in need, including fellow members of the caregiving community, supporting an ecological approach to carer resilience. Our findings may be used to anticipate challenges and promote protective resilience resources in future lockdowns. [ABSTRACT FROM AUTHOR]

Opportunities for adults to access support following a clinical diagnosis of autism are limited. This study investigated perspectives of autistic adults, relatives and clinicians regarding characteristics of optimal adult autism post-diagnosis support and services. In Stage 1, key stakeholders were surveyed about recent experiences of UK adult autism post-diagnostic services immediately following assessment/up to 12 months afterwards. Information gathered from Stage 1 was used to devise a set of statements describing optimal post-autism diagnostic support/service characteristics. In Stage 2 statements were presented to clinicians in a modified Delphi process. Data analyses were non-parametric and descriptive. Three hundred forty-three autistic adults and 45 relatives completed the Stage 1 surveys. Thirty-five clinicians completed a parallel survey. Just over half of adults and relatives reported receiving a follow-up appointment. Fewer than 40% of autistic people received support/services 12 months after diagnosis. Eleven statements describing optimal post-autism diagnostic support/service provision were developed and consensus among clinicians was reached on all. Autistic adults, relatives and clinicians described some aspects of post-autism diagnosis support and services positively; however, there were significant opportunities for improvement. The study findings can be used to develop current UK post-diagnosis support and services and may be relevant internationally. Research has identified types of support helpful to autistic people, for example, physical and mental health interventions, psycho-education, peer support, developing positive identities and affiliation with social groups. However, accessing suitable post-autism diagnosis support and services is extremely difficult. We asked autistic adults, relatives and clinicians about their experiences of receiving and delivering post-autism diagnosis support/services. In Stage 1, 343 autistic adults and 45 relatives completed a survey. They answered questions about their experiences of UK autism post-diagnosis support/services for adults within 12 months after receiving a diagnosis. Thirty-five clinicians completed a similar survey. Just over half of adults and relatives said there was a follow-up appointment or discussion about support after diagnosis. Fewer than 40% received any support/services in 12 months after diagnosis. We used information from the surveys to create 11 statements describing characteristics of appropriate adult post-autism diagnosis support/services. In Stage 2, we asked clinicians for their views on the statements – they agreed with all of them. For example, those adults are offered an additional follow-up meeting after diagnosis and have access to mental and physical health services. We shared results with autistic adults, relatives and clinicians at two events. Some autistic adults, relatives and clinicians were positive about post-autism diagnosis support/services. However, they described many areas for improvement. The study findings can be used to define, develop and improve the types of adult post-diagnosis support services. [ABSTRACT FROM AUTHOR]

Background: The current emphasis among addiction treatment providers is to use person-first language, such as "a person with a substance use disorder," as a way to reduce stigma around addiction and resulting barriers to treatment. This study considers how individuals recovering from substance use feel about the terms "alcoholic" and "addict," particularly how they self-identify and whether they believe the terms carry stigma. Method: Thirty-five individuals were interviewed, recruited primarily, but not exclusively, from 12-step meetings (Alcoholics Anonymous, Narcotics Anonymous), from 3 locations throughout a rural New England state. Interviews were transcribed and coded in Atlas Ti qualitative analysis software, and a content analysis of text coded with "stigma" was conducted. Results: Some comments reflected a belief that the terms "addict" and "alcoholic" carry a stigma. However, more comments rejected the notion of these being stigmatized terms; or acknowledged the stigma but reflected the subject's lack of internalizing of any stigma. Comments reflected other themes including a sense of pride, identity and ownership when self-identifying as an addict or alcoholic. Several comments suggested that person-first language is part of a larger movement to "soften everything," without changing the underlying condition (addiction). The findings may reflect the fact that subjects were recruited from 12-step programs, where the convention is to self-identity using the terms "alcoholic" and/or "addict." Conclusions: Some individuals seeking treatment for addiction may prefer self-identifying using old-school terminology (addict, alcoholic) rather than person-first language, for a variety of reasons (eg, they do not internalize the stigma of such terms). [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]

Purpose: We aimed to classify individuals with RA and =2 additional long-term conditions (LTCs) and describe the association between different LTC classes, number of LTCs and adverse health outcomes. Methods: We used UK Biobank participants who reported RA (n=5,625) and employed latent class analysis (LCA) to create classes of LTC combinations for those with =2 additional LTCs. Cox-proportional hazard and negative binomial regression were used to compare the risk of all-cause mortality, major adverse cardiac events (MACE), and number of emergency hospitalisations over an 11-year follow-up across the different LTC classes and in those with RA plus one additional LTC. Persons with RA without LTCs were the reference group. Analyses were adjusted for demographic characteristics, smoking, BMI, alcohol consumption and physical activity. Results: A total of 2,566 (46%) participants reported =2 LTCs in addition to RA. This involved 1,138 distinct LTC combinations of which 86% were reported by =2 individuals. LCA identified 5 morbidity-classes. The distinctive condition in the class with the highest mortality was cancer (class 5; HR 2.66 95%CI (1.91-3.70)). The highest MACE (HR 2.95 95%CI (2.11-4.14)) and emergency hospitalisations (rate ratio 3.01 (2.56-3.54)) were observed in class 3 which comprised asthma, COPD & CHD. There was an increase in mortality, MACE and emergency hospital admissions within each class as the number of LTCs increased. Conclusions: The risk of adverse health outcomes in RA varied with different patterns of multimorbidity. The pattern of multimorbidity should be considered in risk assessment and formulating management plans in patients with RA. [ABSTRACT FROM AUTHOR]

Research indicates substantial overlap between child abuse and neglect (CAN), exposure to domestic violence and sibling abuse, with multiple victimisation experiences conferring greater risk for adverse mental health outcomes than does exposure to a single subtype. The application of latent class analysis (LCA) to child maltreatment has gained momentum, but it remains the case that few studies have incorporated a comprehensive range of subtypes, meaning that real-life patterns in victimisation experiences cannot be accurately modelled. Based on self-report data from an ethnically diverse sample (N = 2813) of 10–17 year olds in the United Kingdom, the current study used LCA to model constellations among nine types of maltreatment in the home (physical, emotional and sexual abuse; physical and emotional neglect; exposure to physical and verbal domestic violence, or a drug-related threat; and sibling violence). A four-class solution comprising of a low victimisation class (59.3% of participants), an emotional abuse and neglect class (19.0%), a high verbal domestic violence class (10.5%) and a maltreatment and domestic violence class (11.2%) provided the best fit for the data. Associations with sociodemographic variables were examined, revealing differences in the composition of the classes. Compared to the low victimisation class, participants in the verbal domestic violence class, emotional abuse and neglect class and especially the maltreatment and domestic violence class, reported higher symptoms of anxiety and depression and an increased likelihood of non-suicidal self-injury, suicide ideation and suicide attempt. The findings carry important implications for understanding patterns of child maltreatment, and the implications for preventative strategies and support services are discussed. [ABSTRACT FROM AUTHOR]

Background: In the UK, around one-third of young people are exposed to Intimate Partner Violence and Abuse (IPVA) by 21 years old. However, types of IPVA victimization in this population (psychological, physical, sexual), and their relationship with impact and perpetration are poorly understood. Methods: Participants in a UK birth cohort reported IPVA victimization and perpetration by age 21. We carried out a latent class analysis, where we categorized IPVA by types/frequency of victimization, and then assigned individuals to their most probable class. Within these classes, we then estimated rates of reported: 1) types of negative impacts (sad, upset/unhappy, anxious, depressed, affected work/studies, angry/annoyed, drank/took drugs more); 2) types/frequency of perpetration. Results: Among 2130 women and 1149 men, 32% and 24% reported IPVA victimization (of which 89% and 73% reported negative impact); 21% and 16% perpetration. Victimization responses were well represented by five classes, including three apparent in both sexes: No-low victimization (characterized by low probabilities of all types of victimization; average probabilities of women and men belonging to this class were 82% and 70%); Mainly psychological (15% and 12%); Psychological and physical victimization (4% and 7%), and two classes that were specific to women: Psychological and sexual (7%); Multi-victimization (frequent victimization for all three types; 4%). In women, all types of negative impact were most common in the Psychological and sexual and Multi-victimization classes; for men, the Psychological and physical class. In women, all types of perpetration were most common for the Mainly psychological, Psychological and physical and Multi-victimization classes; in men, the Mainly psychological and Psychological and physical classes. Discussion: In this study of young people, we found categories of co-occurrence of types and frequency of IPVA victimization associated with differential rates of negative impact and perpetrating IPVA. This is consistent with emerging evidence of IPVA differentiation and its variable impact in other populations. [ABSTRACT FROM AUTHOR]

Objective: To test the feasibility of a telephone delivered intervention, informed by cognitive behavioural principles, for post-stroke fatigue, and estimated its effect on fatigue and other outcomes. Design: Randomised controlled parallel group trial. Setting: Three Scottish stroke services. Subjects: Stroke survivors with fatigue three months to two years post-stroke onset. Interventions: Seven telephone calls (fortnightly then a 'booster session' at 16 weeks) of a manualised intervention, plus information about fatigue, versus information only. Main measures: Feasibility of trial methods, and collected outcome measures (fatigue, mood, anxiety, social participation, quality of life, return to work) just before randomisation, at the end of treatment (four months after randomisation) and at six months after randomisation. Results: Between October 2018 and January 2020, we invited 886 stroke survivors to participate in postal screening: 188/886 (21%) returned questionnaires and consented, of whom 76/188 (40%) were eligible and returned baseline forms; 64/76 (84%) returned six month follow-up questionnaires. Of the 39 allocated the intervention, 23 (59%) attended at least four sessions. At six months, there were no significant differences between the groups (adjusted mean differences in Fatigue Assessment Scale −0.619 (95% CI −4.9631, 3.694; p = 0.768), the Generalised Anxiety Disorder 7 −0.178 (95% CI −3.823, 3.467, p = 0.92), and the Patient Health Questionnaire −0.247 (95% CI −2.935, 2.442, p = 0.851). There were no between-group differences in quality of life, social participation or return to work. Conclusion: Patients can be recruited to a trial of this design. These data will inform the design of further trials in post-stroke fatigue. [ABSTRACT FROM AUTHOR]

Understanding parental practices and attitudes regarding child sexual abuse (CSA) prevention could be used to improve CSA prevention, but little information is available. In this study, we summarise survey data collected from 248 Australian and UK parents (87% female) with at least one child aged 6-11 years (M = 8.6, SD = 1.8). This is the first study to quantify parental use of protective practices, other than prevention education, which may guard against CSA. Parental media mediation, which may safeguard against online dangers, was another unique focus of this study. Participants reported their discussion of sensitive topics with their children including CSA; behaviors that may reduce the incidence of CSA (e.g., monitoring, supervision, delegation of care and checking-in with the child); mediation of their child's media use; and attitudes towards CSA prevention education. Parents reported discussing sexual abuse less than other sensitive topics such as abduction dangers, drugs, and death but more than issues surrounding puberty, sex and pornography. Parents reported using high levels of protective behaviours, however some areas of concern were revealed. Of concern was the low-moderate level of parental media mediation, with substantial numbers of children potentially exposed to online risks such as using devices unsupervised in bedrooms or chatting to individuals unknown to their parents and not having their devices checked for concerning content. Almost all parents were supportive of CSA prevention education and felt they should provide this education. However, two-thirds of parents thought CSA education may be associated with harms for the child and two-thirds of parents believed children could prevent their own abuse. Reported results will aid in our understanding of which areas of parenting could be strengthened to create safer environments for children. This research has particularly highlighted the need for parents to be more protective around their children's access to online devices. [ABSTRACT FROM AUTHOR]

Background: Dementia is a life-limiting illness, but the trajectory of dying can be difficult to establish and care at end of life can be variable and problematic. Methods: This UK study was carried out to explore the end-of-life-care experiences of people with dementia from the perspective of their family carers. In-depth interviews were conducted with 40 bereaved family carers of people with dementia. Results: Forty family carers (male n = 9, female n = 31) age range: 18–86 years were interviewed. Issues with poor communication were common. The hard work of caring and issues regarding unpredictability of living and dying with dementia were also commonplace within the study. Only three patients were referred for specialist palliative care support at the end of life, all of whom had a dual diagnosis of dementia and cancer. Conclusion: This qualitative study has identified that there are several gaps in the end-of-life care of people with dementia, and frequently, there is poor communication during the last year of life. The need for high-quality integrated care for people dying with dementia with appropriate support during the last year of life is identified. COVID-19 has disproportionately affected people with dementia, and in the post-pandemic era, there is an urgent need to ensure every person dying with dementia is supported to die in their preferred place and that family members are supported and enabled to be treated as the 'expert' in terms of their knowledge of their relatives' care and preferences. [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]

Purpose: Early identification of colorectal cancer (CRC) is an international priority. Multimorbidity (presence of ≥2 long-term conditions (LTCs)) is increasing and the relationship between CRC and LTCs is little-understood. This study explores the relationship between individual LTCs, multimorbidity and CRC incidence and mortality. Methods: Longitudinal analysis of the UK Biobank cohort, participants recruited 2006–2010; N = 500,195; excluding previous CRC at baseline. Baseline data was linked with cancer/mortality registers. Demographic characteristics, lifestyle factors, 43 LTCs, CRC family history, non-CRC cancers, and multimorbidity count were recorded. Variable selection models identified candidate LTCs potentially predictive of CRC outcomes and Cox regression models tested for significance of associations between selected LTCs and outcomes. Results: Participants' age range: 37–73 (mean age 56.5; 54.5% female). CRC was diagnosed in 3669 (0.73%) participants, and 916 (0.18%) died from CRC during follow-up (median follow-up 7 years). CRC incidence was higher in the presence of heart failure (Hazard Ratio (HR) 1.96, 95% Confidence Interval (CI) 1.13–3.40), diabetes (HR 1.15, CI 1.01–1.32), glaucoma (HR 1.36, CI 1.06–1.74), male cancers (HR 1.44, CI 1.01–2.08). CRC mortality was higher in presence of epilepsy (HR 1.83, CI 1.03–3.26), diabetes (HR 1.32, CI 1.02–1.72), osteoporosis (HR 1.67, CI 1.12–2.58). No significant association was found between multimorbidity (≥2 LTCs) and CRC outcomes. Conclusions: The associations of certain LTCs with CRC incidence and mortality has implications for clinical practice: presence of certain LTCs in patients presenting with CRC symptoms could trigger early investigation and diagnosis. Future research should explore causative mechanisms and patient perspectives. [ABSTRACT FROM AUTHOR]

This article describes a pilot qualitative research study, exploring the impact of bereavement experiences, on pre-qualifying social work students in two UK Universities with diverse demographics. The research study took place in the context of general concern about the mental health of UK University students and suggests that social work students may be at particular risk of developing emotional wellbeing issues linked to bereavement. Interviews followed a free association narrative technique, with analysis of the data highlighting four main themes. Firstly, bereavement is associated with practical problems which may trigger wellbeing issues. Secondly, there is an increased need for specific bereavement training and support to be embedded within social work programmes, alongside skills and knowledge of cultural diversity and the part this plays in the bereavement process. Lastly, the study demonstrated that bereavement experiences are not isolated but linked to other losses and therefore students may need effective support to process these before they can effectively support others. The study appears to be distinctive in its focus on the impacts of bereavement on social work students and has significant implications for the ways in which students are supported by social work education programmes, as well as paving the way for further research in this area. [ABSTRACT FROM AUTHOR]

This research was the first in the United Kingdom to examine the prevalence and nature of nonconsensual sharing of sexually explicit messages, pictures, and videos and to examine whether this varies according to gender and by role (i.e., perpetrator, victim, or as dual role of perpetrator/victim). In a sample of 391 young adults (aged 18-25 years), questionnaire data on subjective norms, consensual and nonconsensual sharing, and their motivations for these behaviors were collected. Perpetration of and victimization through nonconsensual sharing was experienced by a substantial number of individuals. There was an association between reporting perpetration of nonconsensual sharing and experiencing victimization. An association was also found between reporting being pressured (i.e., coerced) to send sexually explicit material and experiencing victimization of nonconsensual sharing, which suggests that these behaviors may form part of a continuum of violence and abuse, potentially within intimate relationships. No association was found between gender and (a) perpetration or (b) victimization. However, from a gendered perspective, females perceived there was greater social pressure to post messages, pictures, and videos, compared with males. Motivations for nonconsensual sharing were commonly explained as for fun/a joke, and generally not thought of as problematic, although some victims perceived motivations to be more negative and/or related to revenge/causing distress. Given that this research examined nonconsensual sharing across messages, pictures, and videos for both victimization and perpetration and found it was both perpetrated and experienced by females and males, this does not support the common perception that this is a male perpetrated behavior against women. This has implications for education, policy, intervention, and prevention, with approaches needing to be inclusive of both males and females when addressing perpetration and victimization. [ABSTRACT FROM AUTHOR]

Effectively recognizing, identifying, and utilizing emotional stimuli is essential for successful social interactions, with deficits in these robustly identified as risk factors for offending. Psychological understanding of street gang membership is limited, particularly surrounding emotional dispositions distinguishing street gang from non-gang offenders. This study examined how street gang members compare with non-gang offenders on trait emotional intelligence (TEI), antisocial personality disorder (ASPD), callous–unemotional traits, anger rumination, and aggression. Recruited through volunteer sampling, participants included 73 (44 street gang and 29 non-gang) male offenders incarcerated at a U.K. Category C prison. Participants completed seven questionnaires assessing emotional dispositions, social desirability, and, consistent with the Eurogang definition, street gang membership. To compare participants' demographics and identify the predictors of street gang membership, chi-square and discriminant function analyses were conducted. With a significant discriminant function, Λ =.80, χ2(6) = 14.96, p =.021, high levels of ASPD, anger rumination, and aggression and low levels of TEI predict street gang membership. Compared with non-gang prisoners, street gang prisoners did not differ on callous–unemotional traits, age, or ethnicity. Results suggest that, compared with non-gang prisoners, street gang members were more likely to possess dysfunctional emotional dispositions. Findings from this research have important implications in terms of developing interventions for street gang membership. Specifically, this research supports the need for gang-specific early intervention and prevention programs, with emotion-focused components. Ideas for future research are discussed, including the identification of further sociocognitive, personality, and emotional traits distinguishing street gang from non-gang offenders. [ABSTRACT FROM AUTHOR]

Online abuse, facilitated via social media and mobile technologies, has recently attracted considerable academic attention. The nonconsensual sharing of intimate images—revenge pornography—can have a devastating effect on victims, is a global problem, and constitutes interpersonal violence. The national helpline in the United Kingdom has now received over 7,000 calls. In the United Kingdom, new legislation making revenge pornography a crime was introduced in 2014, yet the police do not always respond appropriately to victims. This article presents the findings of a national online survey of police understanding of revenge pornography, undertaken in the United Kingdom in March 2017. The study set out to investigate police knowledge of revenge pornography legislation, their confidence in responding to cases of revenge pornography, and what level of training they had received. A total of 783 members of the police force responded to the survey and, to the authors' knowledge, this the first study to seek to quantify the understanding of revenge pornography by police officers and staff in England and Wales. The findings suggest that the police in the United Kingdom have a limited understanding of revenge pornography legislation and lack confidence both in investigating cases and in effectively responding to victims. The implications of the study demonstrate that there is an urgent need for training across police forces to ensure that cases of revenge pornography are appropriately responded to, victims are safeguarded, and offenders brought to justice. [ABSTRACT FROM AUTHOR]

Background: Day care services support older people living with long-term conditions (LTC's). Aims: The aims of the study were to determine outcomes in terms of loneliness and health-related quality of life for older people with LTCs attending day care services in the United Kingdom. Methods: Newly referred older people with LTCs to day care services in North West of England and Wales were invited to participate. The EQ-5D-3L and De Jong Loneliness questionnaires were completed at recruitment, 6 and 12 weeks. Results: Ninty-four older people (64% female), age range 65–99 years; mean number of LTCs 4.3 (range: 2–9) were recruited. About 52% lived alone and 36% lived in one of the 20% most deprived local authorities in England and Wales. Outcomes over 12 weeks were comparable for paid, blended, and for volunteer-led services. Conclusion: Following the Covid-19 pandemic, it is increasingly urgent to support older people with LTCs who may have lost physical and cognitive function during lockdown and to support their recovery. Our study suggests that volunteers can provide services and complement the care provided by paid staff, freeing up resources and enabling increasing numbers of older people to be supported. [ABSTRACT FROM AUTHOR]

Objectives: Chronic pain is often experienced alongside other long-term conditions (LTCs), yet our understanding of this, particularly in relation to multimorbidity (≥2 LTCs) is poor. We aimed to examine associations between the presence/extent of chronic pain with type/number of LTCs experienced. Methods: We examined the relationship between number/type of LTCs (N = 45) in UK Biobank participants (n = 500,295) who self-reported chronic pain lasting ≥3 months in seven body sites or widespread. Relative risk ratios (RRR) for presence/extent of chronic pain sites were compared using logistic regression adjusted for sociodemographic (sex/ age/socioeconomic status) and lifestyle factors (smoking/alcohol intake/BMI/physical activity). Results: 218,648 participants self-reported chronic pain. Of these, 69.1% reported ≥1 LTC and 36.2% reported ≥2 LTCs. In 31/45 LTCs examined, >50% of participants experienced chronic pain. Chronic pain was common with migraine/ headache and irritable bowel syndrome where pain is a primary symptom, but also with mental health conditions and diseases of the digestive system. Participants with >4 LTCs were over three times as likely to have chronic pain (RRR 3.56, 95% confidence intervals (CIs) 3.44-3.68) and 20 times as likely to have widespread chronic pain (RRR 20.13, 95% CI 18.26-22.19) as those with no LTCs. Conclusions: Chronic pain is extremely common across a wide range of LTCs. People with multimorbidity were at higher risk of having a greater extent of chronic pain. These results show that chronic pain is a key factor for consideration in the management of patients with LTCs or multimorbidity. [ABSTRACT FROM AUTHOR]

Objective: To report the fidelity of the enhanced upper limb therapy programme within the Robot-Assisted Training for the Upper Limb after stroke (RATULS) randomized controlled trial, the types of goals selected and the proportion of goals achieved. Design: Descriptive analysis of data on fidelity, goal selection and achievement from an intervention group within a randomized controlled trial. Setting: Out-patient stroke rehabilitation within four UK NHS centres. Subjects: 259 participants with moderate-severe upper limb activity limitation (Action Research Arm Test 0–39) between one week and five years post first stroke. Intervention: The enhanced upper limb therapy programme aimed to provide 36 one-hour sessions, including 45 minutes of face-to-face therapy focusing on personal goals, over 12 weeks. Results: 7877/9324 (84%) sessions were attended; a median of 34 [IQR 29–36] per participant. A median of 127 [IQR 70–190] repetitions were achieved per participant per session attended. Based upon the Canadian Occupational Performance Measure, goal categories were: self-care 1449/2664 (54%); productivity 374/2664 (14%); leisure 180/2664 (7%) and 'other' 661/2664 (25%). For the 2051/2664 goals for which data were available, 1287 (51%) were achieved, ranging between 27% by participants more than 12 months post stroke with baseline Action Research Arm Test scores 0–7, and 88% by those less than three months after stroke with scores 8–19. Conclusions: Intervention fidelity was high. Goals relating to self-care were most commonly selected. The proportion of goals achieved varied, depending on time post stroke and baseline arm activity limitation. [ABSTRACT FROM AUTHOR]

Objectives: Previous research with adults born with cleft lip and/or palate (CL/P) has identified a range of concerns regarding mental health and quality of life, concluding that overall emotional functioning is poorer compared to the general population. The aim of the current study was to build on this previous work by investigating the self-reported emotional well-being of adults born with CL/P in the United Kingdom. Design: An online, mixed methods survey was designed by the Cleft Lip and Palate Association in collaboration with the Centre for Appearance Research at the University of the West of England. A total of 207 eligible responses were received between July and October 2018. Qualitative data were analyzed using inductive content analysis, while quantitative data were analyzed using descriptive statistics and independent t tests. Results: Almost half of the sample reported a diagnosis of a mental health condition. Scores on standardized measures indicated significantly lower global self-worth, higher levels of fear of negative appearance evaluation, and lower self-perceived job competence compared to normative data. Scores of overall body esteem were in line with the general population. Most participants had not received psychological support from their regional CL/P team and 41% were unaware of their entitlement to treatment from the National Health Service. Conclusions: Individuals with CL/P may be at risk of emotional distress persisting into adulthood. The integration of routine psychological support from an early age is highly recommended, as is information for young adults about to complete routine treatment. Comprehensive psychological screening for adults returning to the service later in life is also strongly advised. [ABSTRACT FROM AUTHOR]

Previous work suggests that written text produced by university students with dyslexia is scored lower than that produced by their peers. The present study used a digital writing tablet to examine the writing process and the quality of text written by university students with dyslexia. Revision behavior during and after writing was also investigated. Thirty-two university students with dyslexia (mean age, 20 years), were compared with 32 typically developing (TD) students matched by age. Students composed a written text in response to an expository essay prompt. In line with previous research, students with dyslexia made a higher number of spelling errors and their essays were rated as poorer than TD students. However, students with dyslexia were comparable to their peers on measures of time spent writing, amount of text produced, and the temporal analyses (handwriting execution, pause times). Students with dyslexia made significantly more revisions to spelling during and after transcription than their peers, although other revision behavior was similar across groups. Explanations for the finding of poor writing quality are explored. Importantly, the findings suggest that continued support with spelling and writing is needed for university students with dyslexia. Instruction directed toward effective revision strategies may also prove useful. Limitations and directions for future research are discussed. [ABSTRACT FROM AUTHOR]

Comparative international data on patterns of inequality in child welfare interventions, for example, the proportion of children about whom there are substantiated child protection concerns or who are in out-of-home care, are far less developed than data about inequalities in health. Few countries collect reliable, comprehensive information and definitions, methods of data collection and analysis are rarely consistent. The four UK countries (England, Northern Ireland, Scotland and Wales) provide a potential 'natural experiment' for comparing intervention patterns. This study reports on a large quantitative, descriptive study focusing on children in contact with children's services on a single date in 2015. It found that children's chances of receiving a child protection intervention were related to family socio-economic circumstances, measured by neighbourhood deprivation, within all four countries. There was a strong social gradient which was significantly steeper in some countries than others. Ethnicity was another important factor underlying inequalities. While inequalities in patterns of intervention between the four countries were considerable, they did not mirror relative levels of deprivation in the child population. Inequalities in intervention rates result from a combination of demand and supply factors. The level and extent of inequity raise profound ethical, economic and practical challenges to those involved in child protection, the wider society and the state. [ABSTRACT FROM AUTHOR]

Objective: To establish feasibility of initiating electrical stimulation treatment of wrist extensors and flexors in patients early after stroke to prevent muscle contractures and pain. Design: Feasibility randomized controlled trial with economic evaluation. Setting: A specialist stroke unit in Nottinghamshire. Subjects: A total of 40 patients recruited within 72 hours post-stroke with arm hemiparesis. Interventions: Participants were randomized to receive usual care or usual care and electrical stimulation to wrist flexors and extensors for 30 minutes, twice a day, five days a week for three months. Initial treatment was delivered by an occupational therapist or physiotherapist who trained participants to self-manage subsequent treatments. Measures: Measures of feasibility included recruitment and attrition rates, completion of treatment, and successful data collection. Outcome data on wrist range of motion, pain, arm function, independence, quality of life, and resource use were measured at 3-, 6-, and 12-months post-randomization. Results: A total of 40 participants (of 215 potentially eligible) were recruited in 15 months (20 men; mean age: 72 (SD: 13.0)). Half the participants lacked mental capacity and were recruited by consultee consent. Attrition at three-month follow-up was 12.5% (death (n = 2), end-of-life care (n = 2), and unable to contact (n = 1)). Compliance varied (mean: 65 (SD: 53)) and ranged from 10 to 166 treatments per patient (target dosage was 120). Data for a valid economic analysis can be adequately collected. Conclusion: Early initiation of electrical stimulation was acceptable and feasible. Data collection methods used were feasible and acceptable to participants. A large definitive study is needed to determine if electrical stimulation is efficacious and cost effective. [ABSTRACT FROM AUTHOR]

Objective: To establish the prevalence of unmet need for spasticity management in care home residents in two counties of the United Kingdom. Design: Cross-sectional observational study with a six-month follow-up arm for participants with identified unmet needs. Setting: 22 care homes in Derbyshire and Nottinghamshire. Subjects: 60 care home residents with upper motor neuron syndrome–related spasticity. Interventions: No intervention. When unmet needs around spasticity management were identified, the participant's general practitioner was advised of these in writing. Main measures: Resistance to Passive Movement Scale to assess spasticity; recording of (a) the presence of factors which may aggravate spasticity, (b) potential complications of spasticity, (c) spasticity-related needs and (d) current interventions to manage spasticity. Two assessors judged the presence or absence of needs for spasticity management and whether these needs were met by current care. Results: Out of 60 participants, 14 had no spasticity-related needs; 46 had spasticity-related needs; 11 had needs which were being met by current care and 35 participants had spasticity-related needs at baseline which were not being met by their current care. These were most frequently related to the risk of contracture development or problems with skin hygiene or integrity in the upper limb. In total, 6 participants had one or more pressure sores and 35 participants had one or more established joint contractures. A total of 31 participants were available for follow-up. Informing general practitioners of unmet needs resulted in no change to spasticity management in 23/31 cases. Conclusion: Care home residents in this study had high levels of unmet need for spasticity management. [ABSTRACT FROM AUTHOR]

Objective: We aimed to determine prevalence of pre-stroke frailty in acute stroke and describe validity of a Frailty Index–based assessment. Design: Cross-sectional. Setting: Single UK urban teaching hospital. Subjects: Consecutive acute stroke unit admissions, recruited in four waves (May 2016–August 2018). We performed the assessments within first week and attempted to include all admissions. Main measures: Our primary measure was a Frailty Index, based on cumulative disorders. A proportion of participants were also assessed with the 'Frail non-disabled' questionnaire. We evaluated concurrent validity of Frailty Index against variables associated with frailty in non-stroke populations. We described predictive validity of Frailty Index for stroke severity and delirium. We described convergent validity, quantifying agreement between frailty assessments and a measure of pre-stroke disability (modified Rankin Scale) using kappa statistics and correlations. Results: We included 546 patients. A Frailty Index–defined frailty syndrome was observed in 427 of 545 patients (78%), of whom, 151 (28%) had frank frailty and 276 (51%) were pre-frail. Phenotypic frailty was observed in 72 of 258 patients (28%). We demonstrated concurrent validity via significant associations with all variables (all p < 0.01). We demonstrated predictive validity for stroke severity and delirium (p < 0.01). Agreement between the frailty measures was poor (kappa = –0.06) and convergent validity was moderate (Frail non-disabled 'Cramer's V' = 0.25; modified Rankin Scale 'Cramer's V' = 0.47). Conclusion: Frailty is present in around one in four patients with acute stroke; if pre-frailty is included, then a frailty syndrome is seen in three out of four patients. The Frailty Index is a valid measure of frailty in stroke; however, there is little agreement between this scale and other measurements of frailty. [ABSTRACT FROM AUTHOR]

Objective: To examine whether stroke survivors in inpatient rehabilitation with pre-existing cognitive impairment receive less therapy than those without. Design: Prospective observational cohort. Setting: Four UK inpatient stroke rehabilitation units. Participants: A total of 139 stroke patients receiving rehabilitation, able to give informed consent/had an individual available to act as personal consultee. In total, 33 participants were categorized with pre-existing cognitive impairment based on routine documentation by clinicians and 106 without. Measures: Number of inpatient therapy sessions received during the first eight weeks post-stroke, referral to early supported discharge, and length of stay. Results: On average, participants with pre-existing cognitive impairment received 40 total physiotherapy and occupational therapy sessions compared to 56 for those without (mean difference = 16.0, 95% confidence interval (CI) = 2.9, 29.2), which was not fully explained by adjusting for potential confounders (age, sex, National Institutes of Health Stroke Scale (NIHSS), and pre-stroke modified Rankin Scale (mRS)). While those with pre-existing cognitive impairment received nine fewer single-discipline physiotherapy sessions (95% CI = 3.7, 14.8), they received similar amounts of single-discipline occupational therapy, psychology, and speech and language therapy; two more non-patient-facing occupational therapy sessions (95% CI = –4.3, –0.6); and nine fewer patient-facing occupational therapy sessions (95% CI = 3.5, 14.9). There was no evidence to suggest they were discharged earlier, but of the 85 participants discharged within eight weeks, 8 (42%) with pre-existing cognitive impairment were referred to early supported discharge compared to 47 (75%) without. Conclusion: People in stroke rehabilitation with pre-existing cognitive impairments receive less therapy than those without, but it remains unknown whether this affects outcomes. [ABSTRACT FROM AUTHOR]