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Introduction: The aim of this study was to gain consensus among young people with a stoma due to inflammatory bowel disease (IBD) on the priorities for the content of an intervention for the self‐management of stoma‐related distress. The current identification and management of distress in young people with a stoma is often suboptimal in clinical settings and there is a need for improved support resources. Methods: Two consensus group meetings were carried out via online video conferencing, using nominal group technique. Participants generated, rated on a Likert scale and discussed, topics for inclusion in a future self‐management intervention. Results: Nineteen young people, aged 19–33, with a stoma due to IBD took part in one of two group meetings. Participants were located across England, Scotland, and Northern Ireland. Twenty‐nine topics were generated by participants, seven of which reached consensus of ≥80%, that is, a mean of ≥5.6 on a 7‐point Likert scale. These were: receiving advice from young people with lived experience of stoma surgery; advice on/addressing concerns about romantic relationships, sex and intimacy; information about fertility and pregnancy related to stoma surgery; stoma 'hacks', for example, useful everyday tips regarding clothing, making bag changes easier and so forth; reflecting on and recognising own emotional response to surgery; tips on managing the stoma during the night; and processing trauma related to the illness and surgery journey. Conclusions: Findings extend previous research on young people's experiences of stoma surgery, by generating consensus on young people's priorities for managing distress related to surgery and living with a stoma. These priorities include topics not previously reported in the literature, including the need for information about fertility and pregnancy. Findings will inform the development of a self‐management resource for young people with an IBD stoma and have relevance for the clinical management of stoma‐related distress in this population. Patient or Public Contribution: Three patient contributors are co‐authors on this paper, having contributed to the study design, interpretation of results and writing of the manuscript. The study's Patient and Public Involvement and Engagement advisory group also had an integral role in the study. They met with the research team for four 2‐h virtual meetings, giving input on the aims and purpose of the study, recruitment methods, and interpretation of findings. The group also advised on the age range for participants. The views of young people with a stoma are the central component of the study reported in this paper, which aims to gain consensus among young people with an IBD stoma on their priorities for the content of a resource to self‐manage distress related to stoma surgery. [ABSTRACT FROM AUTHOR]

Family group conferences (FGCs) in child welfare share decision-making with family members by bringing the immediate and wider family together to make a plan to meet a child's needs. This paper reports survey findings on FGC provision in the UK in 2022 and explores whether in England the presence of an FGC service and the rate of FGC provision is associated with the rate of children in care, entering care, in kinship foster care and leaving care. Seventy-nine per cent (n  = 167) of local authorities in the UK provided FGCs to families, and 14 per cent (n  = 29) did not. Services that were more established offered a more diverse range of FGCs. The introduction of FGCs in English local authorities was associated with a higher rate of children in care, but also higher rates of kinship foster care, a key goal of FGCs where it is not possible for children to stay with their parents. Higher rates of FGCs were associated with more children leaving care, possibly due to reunification with birth families. To understand in more detail, the circumstances of children in and leaving care in local authorities with FGCs, individual data linkage studies are needed. [ABSTRACT FROM AUTHOR]

Purpose: This paper aims to present data about access to health and social care services during the COVID-19 pandemic for adults with learning disabilities across England, Northern Ireland, Scotland and Wales. Design/methodology/approach: Data were collected directly from 621 adults with learning disabilities and through separate proxy reports by family carers and paid support staff of another 378 adults with learning disabilities. The data were collected between December 2020 and February 2021 and concerned the use of health and social care services since the start of the first COVID-19 national lockdown in March 2020. Findings: Access to and use of health and social care services significantly reduced for adults with learning disabilities across the UK during the COVID-19 pandemic between March 2020 and February 2021, with many people not receiving any services at all during that period. Similar patterns were seen across England, Northern Ireland, Scotland and Wales. However, data suggest some variations between countries for some services. Practical implications: Future pandemic planning must ensure that access to these essential services is not completely lost for adults with learning disabilities and their family carers, as it was in some cases during the COVID-19 pandemic in 2020. Originality/value: This is the largest study about the impact of the COVID-19 pandemic on health and social care services for adults with learning disabilities in the UK. The authors primarily collected data directly from adults with learning disabilities, and worked with partner organisations of people with learning disabilities throughout the study. [ABSTRACT FROM AUTHOR]

ABSTRACT Until recently, little was known about kinship care in the UK. Research has begun to illuminate the circumstances which lead to children being cared for by relatives, and the stresses and strains experienced by carers. However, most UK research has only considered 'looked-after' children placed with formal approved kinship foster carers, although this group forms the smallest proportion of children in kinship arrangements. In this paper, we use microdata from the 2001 UK Population Census to examine the characteristics of kinship carers and children, and demonstrate that most children in kinship care are growing up in informal unregulated arrangements. Implications for policy and practice are discussed. [ABSTRACT FROM AUTHOR]

Background: The importance of good oral hygiene for patients in Intensive Care Units (ICUs) is well recognized, however, the most effective way to achieve good oral care in the ICU is unclear. Aim: This study aimed to provide a national picture of oral care practices in adult ICUs in the United Kingdom (UK) to identify areas for improvement. Study Design: A national one‐day point prevalence study was undertaken in adult ICUs in the UK in the period from 30th September to 14th October 2021. Data were collected on all patients in the ICU on the date of data collection. Using a validated electronic data collection form, anonymised data were collected on methods and frequency of oral care provided, and the use of oral care protocols within the ICU. Data were analysed using descriptive analysis. Results: Data from 195 patients in 15 ICUs in England, Wales and Northern Ireland were collected. Written oral care protocols were available for use in the care of 65% (n = 127) of patients. 73% (n = 142) of patients received oral care within the 24‐h period. Oral care methods included toothbrushing 41% (n = 79), foam sticks 3% (n = 5), moisturizing the oral cavity 10% (n = 19) and mouth rinse with chlorhexidine 3% (n = 5) and other oral care methods not specified 12% (n = 23). 44% (n = 85) of patients had an oral assessment within the 24‐h period and variable assessment methods were used. Conclusion: There is large variability in oral care provision and methods for intubated ICU patients and a lack of consensus was revealed in the study. Oral assessment is conducted less frequently using multiple tools. Optimal oral care standards and further research into oral care provision is pivotal to address this important patient‐relevant practice. Relevance to Clinical Practice: Oral care is a fundamental part of care for ICU patients, however, there is a large degree of variability, and oral care is often not based upon oral assessment. The use of an oral care protocol and oral assessments would help to improve patient care, ease of use for staff and provide a tailored oral care plan for patients, improving efficiency and preventing wasted resources. [ABSTRACT FROM AUTHOR]

Aims: To evaluate whether adding financial incentives to usual care is cost‐effective in encouraging pregnant women to quit tobacco smoking, compared with usual care alone. Design: Cost‐effectiveness analysis (CEA) and cost–utility analysis (CUA) from a health‐care provider's perspective, embedded in the Smoking Cessation in Pregnancy Incentives Trial (CPIT III). Long‐term analyses were conducted from the same perspective, using an existing Markov model over a life‐time horizon. Setting: Seven maternity smoking cessation sites in Scotland, England and Northern Ireland in the United Kingdom. Participants: In the short‐term analysis, CPIT III participants were assessed: women 16 years or older, self‐reporting as smokers, fewer than 24 weeks pregnant and English‐speaking (n = 944). The same population was used for the life‐time analysis, plus their infants. Measurements Costs included financial incentive vouchers and postage, cessation support and nicotine replacement therapy and neonatal stays. The outcome measure was a biochemically verified quit rate for the CEA and quality‐adjusted life‐years (QALYs) for CUA. Costs are presented in 2020 GBP sterling (£). Data for the life‐time analysis came from the trial and were combined with data from published literature embedded in the model, reporting incremental cost per quitter and QALY. A 3.5% discount rate was applied. Findings The short‐term incremental cost per quitter was £4400 and cost per QALY was £150 000. Results of sensitivity analyses confirmed these results. The long‐term analysis combined costs and outcomes for mother and infants; results showed a cost saving of £37 [95% confidence interval (CI]) = £35–106] and increase in QALYs of 0.171 (95% CI = 0.124–0.229). These findings indicate that, over a life‐time, financial incentives are cost‐saving and improve health outcomes. Conclusions: In the United Kingdom, offering up to £400 financial incentives, in addition to usual care, to support pregnant women to stop smoking appears to be highly cost‐effective over a life‐time for mother and infants. [ABSTRACT FROM AUTHOR]

Organisations funded by Sport England or UK Sport must work towards achieving standards for safeguarding and protecting children in sport as set by the National Society for the Prevention of Cruelty to Children's Child Protection in Sport Unit (CPSU) and encourage a culture of listening to children. The present research was commissioned by the NSPCC CPSU to understand the practices of UK sports clubs regarding this objective. An electronic questionnaire was distributed through the national governing bodies of sport working with the CPSU. Some 64 clubs/squads representing 6,000+ juniors (under 18 years) responded. Quantitative data were analysed using simple statistics and qualitative data were themed utilising Foucault's theory of power and following Braun and Clark's six‐phase guide. Discourse, hierarchical judgement and docility were considered with reference to formal management and cultural environments. Semantic and latent themes were explored. The themes identified were: expectation awareness, reframing voice and preserving discourse. Clubs recognise the value of listening to children. However, existing power relations valorise adult knowledge fields over the experiences of juniors. Technology could provide an effective solution as it is remote, potentially anonymous and culturally accessible. As power is a productive force, problematisation of organisational culture could centralise children's voices and limit/prevent abuse. [ABSTRACT FROM AUTHOR]

Background: Palliative rehabilitation involves multi-professional processes and interventions aimed at optimising patients' symptom self-management, independence and social participation throughout advanced illness. Rehabilitation services were highly disrupted during the Covid-19 pandemic. Aim: To understand rehabilitation provision in palliative care services during the Covid-19 pandemic, identifying and reflecting on adaptative and innovative practice to inform ongoing provision. Design: Cross-sectional national online survey. Setting/participants: Rehabilitation leads for specialist palliative care services across hospice, hospital, or community settings, conducted from 30/07/20 to 21/09/2020. Findings: 61 completed responses (England, n = 55; Scotland, n = 4; Wales, n = 1; and Northern Ireland, n = 1) most frequently from services based in hospices (56/61, 92%) providing adult rehabilitation. Most services (55/61, 90%) reported rehabilitation provision becoming remote during Covid-19 and half reported reduced caseloads. Rehabilitation teams frequently had staff members on sick-leave with suspected/confirmed Covid-19 (27/61, 44%), redeployed to other services/organisations (25/61, 41%) or furloughed (15/61, 26%). Free text responses were constructed into four themes: (i) fluctuating shared spaces; (ii) remote and digitised rehabilitation offer; (iii) capacity to provide and participate in rehabilitation; (iv) Covid-19 as a springboard for positive change. These represent how rehabilitation services contracted, reconfigured, and were redirected to more remote modes of delivery, and how this affected the capacity of clinicians and patients to participate in rehabilitation. Conclusion: This study demonstrates how changes in provision of rehabilitation during the pandemic could act as a springboard for positive changes. Hybrid models of rehabilitation have the potential to expand the equity of access and reach of rehabilitation within specialist palliative care. [ABSTRACT FROM AUTHOR]

This article addresses the challenge of promoting physical activity through a focus on equity and engaging physically inactive citizens through the development of inclusive strategies within parkrun UK—a free, volunteer-led, weekly mass community participation running event. We discuss how a UK-based action research design enabled collaboration with volunteer event organizers to understand participant experiences, constraints and develop localized inclusive practices. In contrast with 'expert'-driven health behaviour interventions, our research pursued a 'ground up' approach by asking what can be learnt from the successes and challenges of organizing community events, such as parkrun UK, to promote inclusion? A modified participatory action research approach was used with four parkrun sites across England, Scotland and Northern Ireland, that involved quantitative and qualitative analysis of survey data (n  = 655) that informed the process. Our analysis explored parkrunners' and volunteer organizers' perceptions relating to (i) the demographics of parkrun participation and (ii) actions for change in relation to the challenges of engaging marginalized groups (women, ethnic minorities, low income, older people, those with disabilities or illness). We discuss the challenges and opportunities for addressing (in)equity and inclusion through volunteer-based organizations and the implications for translating knowledge into organizational strategies. [ABSTRACT FROM AUTHOR]

Purpose: The Model for Dementia Palliative Care Project will develop a service-delivery model for community-based dementia palliative care. Many countries provide dementia palliative care services, albeit with considerable variability within these. However, little is known about what service providers consider to be the most important components of a dementia palliative care model. This study aimed to address this knowledge gap. Design/methodology/approach: An exploratory design using a survey method was used as an initial phase of the wider project. A web-based survey was developed, piloted (n = 5), revised, and distributed within five healthcare jurisdictions: the Republic of Ireland, Northern Ireland, England, Scotland, and Wales. The target population was health and social care professionals, policymakers, and academics interested in dementia and palliative care. Content analysis of open-ended questions identified common themes; descriptive statistics were applied to the closed-ended questions. Findings: Overall, N = 112 complete surveys were received. Key care principles incorporated the philosophies of palliative care and dementia care; many described "holistic" and "person-centred care" as the core. Important individual service components were the support for carers, advanced care planning, information, education and training, activities for "meaningful living", comprehensive disease management, coordinated case management, and linking with community health services and social activities. Barriers included poor availability and organisation of healthcare services, stigma, misconceptions around dementia prognosis, insufficiently advanced care planning, and dementia-related challenges to care. Facilitators included education, carer support, and therapeutic relationships. Originality/value: This study, as part of the larger project, will directly inform the development of a novel service delivery Model of Dementia Palliative Care for Ireland. The results can also inform service planning and design in other countries. [ABSTRACT FROM AUTHOR]

Background A large number of people who experience a stroke are affected by dysarthria. This may be in isolation or in association with aphasia and/or dysphagia. Despite evidence highlighting the psychological and social impact of having post-stroke dysarthria and a number of clinical guidelines that make recommendations for appropriate management, little is known currently about UK service delivery issues relating to speech and language therapy (SLT) assessment and treatment for this group. Such evidence is necessary in order to plan, develop and research services for people with post-stroke dysarthria. Aims To gain an overview of SLT practices in the management of people with dysarthria after stroke in the UK. Methods & Procedures SLTs in the UK were asked to complete an online survey addressing referral patterns, caseload profiles, and their assessment and intervention methods for post-stroke dysarthria. In the absence of a national register of clinicians working with people with acquired dysarthria, a snowballing method was used to facilitate participant recruitment. Results were analysed using descriptive statistics. Outcomes & Results A total of 146 SLTs responded. The majority were employed by the National Health Service (NHS). Most patients were referred within 1 week post-stroke. Almost half the respondents did not regularly use formal assessments and the use of instrumentation was rare, including the use of video recording. The focus of therapy for mild, moderate and severe dysarthria did not differ significantly for clinicians. A little under half the respondents endorsed non-verbal oral exercises in rehabilitation. The survey demonstrated some appreciation of the centrality of regular intensive practice to effect change, but this was in a minority. Conclusions & Implications Through this research it became clear that basic information regarding post-stroke dysarthria incidence, prevalence and core demographics is currently unavailable. More embedded NHS SLT reporting systems would make a significant contribution to this area. A more in-depth examination is required of the natural history of dysarthria over the months and years following stroke, of SLT practices in relation to post-stroke dysarthria, with investigations to understand more fully the choices SLTs make and how this relates to available evidence to support their clinical decision-making. [ABSTRACT FROM AUTHOR]

Prostate cancer is the most common cancer in men in the UK accounting for 25% of all new cases of cancer. It is predicted to become the most common cancer overall by 2030. A national survey of the specialist nursing workforce caring for men with prostate cancer was completed across the four countries of the UK during June and July 2014. In total 302 specialist nurses completed the survey and data from 285 was used in the analysis. This is the biggest whole population survey of this workforce in recent years. The most common job title was clinical nurse specialist (185) and the most common band was agenda for change band 7 (174). However in Scotland 50% of the respondents stated that they were paid on band 6. Over half the group (158) had worked in prostate cancer care for more than 10 years. Few (48) had come into specialist posts from a specific specialist nurse development role. There is wide geographic variation in the provision of specialist nursing for men with prostate cancer. This is reflected in available hours and caseload sizes. The respondents reported frozen and vacant posts across the UK. This equated to 58·3 full time equivalents. The work of specialist nurses caring for men with prostate cancer is clinically complex and appears to cover most key times in the cancer journey. However workload appears to be limiting the care that the nurses are able to provide with over half the respondents (163) saying that they left work undone for patients. [ABSTRACT FROM AUTHOR]

Aim: This research assessed the relationships between perceived stress and a range of self-reported symptoms and health complaints in a representative sample of students across UK universities. Subjects and methods: The data comprised 3,706 students and was collected between 2007 and 2008 simultaneously at seven universities in three countries of the UK: England, Wales, and Republic of Northern Ireland. A self-administered questionnaire measured health complaints (22 symptoms) and Cohen's Perceived Stress Scale. Sociodemographic and lifestyle data were also collected. Factor analysis developed four groups of health complaints: psychological, circulatory/breathing, gastro intestinal, and pains/aches. Results: The symptoms most often reported as having occurred sometimes/very often in the last 12 months were fatigue (61.0 %), headache (59.5 %) and difficulties to concentrate (54.4 %), while back (43.3 %) and neck/shoulder pain (39.4 %) were also frequent. Multinominal logistic regression revealed a clear association and a linear trend between increasing level of stress and a higher frequency of psychological symptoms which remained significant after adjustment for many other factors. For circulatory/breathing symptoms and for pains/aches, associations with perceived stress were only significant at higher perceived stress levels. There was no association between perceived stress and gastrointestinal symptoms. For most symptoms, poor health was consistently associated with higher frequency of symptoms across all four symptom groups. Similarly, better quality of life was associated with lower frequency of psychological and circulatory/breathing symptoms, but not for the other two symptom groups. Conclusions: The different profiles of reported complaints and their association with perceived stress, poor health and low quality of life should give rise to tailored interventions in this young population. [ABSTRACT FROM AUTHOR]