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BACKGROUND: Health and social care regulators ensure that professionals have the correct qualifications and experience to practice in their profession. Globally, there are over 130 regulators of nursing alone and 13 health and social care statutory regulators in the United Kingdom. The public are the largest source of concerns to regulators about the registrants' fitness to practise (FtP). AIM: This study aimed to examine the amount, type and content of the information available from UK regulators and evaluate the usability of the process for members of the public considering raising a concern with a regulator about a registrant's fitness to practise (FtP) and the experience of those who had recently raised a concern. METHODS: The websites of the UK's 13 statutory health and social care regulators were searched between November 2021 and February 2022 for information about the process of raising a concern. Webpages and public-facing documentation were downloaded, and qualitative content analysis was conducted. The usability of regulator websites and the concerns referral form were assessed by 11 people using an adapted 'system usability scale'. Seven interviews, a focus group (n = 5) and a survey (n = 62) of people who had raised a concern were used to explore their experiences to validate our findings and recommendations. RESULTS: Themes were identified related to format and layout, the process and support to raise a concern, with wide variation found between regulators. Focus groups, interviews and surveys validated these findings. DISCUSSION AND CONCLUSION: Information and the ease of finding this information are fundamental in promoting public confidence and trust in regulator purpose and process. When raising a concern, it is important that information is honest, clear and accurate and available in a range of different formats so that it suits the diverse needs of members of the public. Improvements in these processes could support regulators to better achieve their primary purpose of protecting the public. PUBLIC CONTRIBUTION: The public were consulted on our findings using two focus groups, seven interviews and 62 survey respondents. Our project advisory group of people with lived experience of involvement in FtP discussed the findings and contributed to the recommendations. TRIAL REGISTRATION: N/A.

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BACKGROUND: Health and social care regulators are organisations that seek to maintain public trust in professionals and protect the public from harmful practitioners. For example, they ensure that practitioners have the correct qualifications to practice and investigate any concerns raised about them. Serious concerns can result in a fitness to practise (FtP) hearing where a member of the public may be required to give evidence as a witness. Being a witness and being cross-examined is known to often be traumatic, particularly for members of the public in criminal trials. There is some research evidence that registered professionals who are the subject of the proceedings may suffer mental ill health as result of the experience. But there is scant research that specifically explores the experiences of members of the public giving evidence in a FtP hearing. The regulator web pages are an important source of information for public witnesses to prepare themselves for a FtP hearing. AIM: This study aimed to examine the publicly available information for public witnesses from the 13 health and social care regulators in the United Kingdom to evaluate the content, amount, type and format of information available and make recommendations about how regulators can improve these. METHODS: Regulator websites were searched during November 2021-February 2022 for information for the public on what happens after raising a concern with a regulator. Resources were downloaded and qualitative content analysis conducted. Our findings were validated by interviews (n = 7) with the public including people with experience of FtP and a focus group of the public (n = 5). RESULTS: One hundred and forty-six resources (97 webpages and 25 public facing documents, 20 videos and 4 easy read documents) were found. Topics included screening and investigation, preparing for a hearing, during a hearing and after a hearing, and support for witnesses. DISCUSSION AND CONCLUSION: We conclude that there are many deficiencies in the information content and its presentation for the public and some exemplars, such as the use of flowcharts and short videos to explain the FtP processes. Recommendations for practice take the form of a framework with three themes, (i) co-production, (ii) preferred content and (iii) format. It may be used by regulators to enhance their support for members of the public as witnesses in FtP hearings. PUBLIC CONTRIBUTION: Our advisory group of people with lived experience of involvement as members of the public in FtP discussed the findings and contributed to the recommendations.

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Background: Breastfeeding impacts positively on multiple health outcomes, but < 50% of UK women breastfeed at 8 weeks. Women with long-term conditions face additional challenges in breastfeeding. Objectives: To synthesise global and UK evidence to co-create an implementation and evaluation toolkit for cost-effective breastfeeding support in the NHS. Design: Evidence syntheses with stakeholder engagement. Review methods: Systematic reviews examined effectiveness of breastfeeding support for (1) healthy women and (2) women with long-term conditions using Cochrane Pregnancy and Childbirth Group methods. Mixed-methods systematic reviews synthesised process evaluations of effective breastfeeding support interventions for healthy women and experiences of receiving/providing support for breastfeeding women with long-term conditions. Cross-study synthesis integrated qualitative and quantitative findings. Systematic reviews synthesised evidence on the incremental costs and cost-effectiveness of breastfeeding support following National Institute for Health and Care Excellence guidance. All searches were conducted from May 2021 to October 2022. Stakeholder engagement and toolkit development comprised online discussions, a modified Delphi study, focus groups and four workshops. Participants were 23 stakeholders, 16 parents in the parents' panels, 15 women in the focus groups and 87 stakeholders who attended the workshops. Results: We found considerably more interventions designed for healthy women (review 1) than aimed at women with long-term conditions (reviews 1 and 4); approximately half of the studies were targeted at groups at higher risk of poor breastfeeding outcomes, and the impact of support may be different in these populations. Despite this, studies from review 2 found that women perceived the provision of support as positive, important and needed. Studies from review 5 echoed a range of suggestions from participants regarding potential strategies to improve breastfeeding support, with the most widely reported being the need to acknowledge the role and influence of other sources of support (e.g. partners, family, friends, peers, external professionals, web-based resources) and involving these sources in the provision of breastfeeding support for women with long-term conditions. In reviews 3 and 6, there was uncertainty about the cost-effectiveness of breastfeeding support interventions due to the limited number of studies and lack of good-quality evidence. Limitations: There was a lack of evidence for the effectiveness and cost-effectiveness of breastfeeding interventions in the UK. There was often insufficient information reported about intervention characteristics. Conclusions: 'Breastfeeding only' support probably reduces the number of women stopping any or exclusive breastfeeding. The evidence for 'breastfeeding plus' interventions is less consistent, but these may reduce the number of women stopping exclusive breastfeeding at 4-6 weeks and at 6 months. We found no evidence of differential intervention effects regarding mode of provision or provider. Cost-effectiveness is uncertain due to the lack of good-quality evidence. Key enablers of successful implementation were responsiveness and tailoring of interventions to both women's and supporters' needs. Breastfeeding support as delivered in the included studies probably has little to no effect on breastfeeding outcomes for women with long-term conditions. The mixed-methods synthesis and stakeholder work identified that existing interventions may not address the complex needs of these women. The main study output is a co-produced toolkit to guide implementation and evaluation of breastfeeding support services in the UK. Future work: Evaluation of breastfeeding support for all women, particularly those at risk of poor breastfeeding outcomes (e.g. long-term conditions, deprivation). This could involve tailoring the toolkit to local contexts via implementation and effectiveness studies or using quality improvement studies. Study registration: This study is registered as PROSPERO CRD42022337239, CRD42021229769 and CRD42022374509. The reviews of economic evidence were not registered; however, the review protocol can be accessed via the repository held by Queen's University Belfast Research Portal (https://pure.qub.ac.uk/). Funding: This award was funded by the National Institute for Health and Care Research (NIHR) Health and Social Care Delivery Research programme (NIHR award ref: NIHR130995) and is published in full in Health and Social Care Delivery Research; Vol. 12, No. 20. See the NIHR Funding and Awards website for further award information.

We know that breastfeeding is good for the health of mothers and babies, yet many mothers experience difficulties and stop breastfeeding before they want to. This is noticeable among women living in disadvantaged areas where there are low rates of breastfeeding. Good support may help women overcome difficulties so that they can continue to breastfeed. Women with chronic illnesses such as diabetes and depression face additional challenges in breastfeeding. We wanted to understand how to improve breastfeeding support for UK women. We brought together previous scientific studies to learn about what works. We also spoke with parents and service providers. We combined all our findings into a toolkit to help the NHS improve breastfeeding support for women. We found that, for healthy women, some forms of breastfeeding support can probably help reduce the number of women stopping breastfeeding and help them breastfeed exclusively. For women with chronic illnesses, we found that the types of support used in the studies probably did not help women to breastfeed. Most of the evidence did not come from the UK. We identified barriers to providing breastfeeding support for all women, especially those who are disadvantaged. We identified strategies that could help the NHS overcome these barriers. There was a lack of evidence on how cost-effective these interventions are compared with usual care, but parents and providers saw the value of paying for breastfeeding support. Giving women targeted breastfeeding support will help them to breastfeed; however, we need to test if this support works in the NHS. We also need to develop additional services for women with chronic illnesses. The NHS could use our findings to improve support for all breastfeeding women by identifying specific barriers and using evidence-based strategies to overcome them.

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Background: People with learning disabilities are living longer. Despite government policy to encourage people to lead supported lives in their community, family carers often maintain support due to dissatisfaction with services. This can lead to people moving from the family home in a crisis. Objectives: (1) Find out what is known about health needs and resources for older people with learning disabilities (aged ≥ 40 years); (2) identify exemplars of good services for older people with learning disabilities; (3) explore service exemplars through ethnographic case studies; (4) evaluate support for older people with learning disabilities and their families through co-producing and testing future planning tools and (5) co-produce recommendations and resources. Design and methods: Work package 1 rapid scoping reviews - three reviews focused on the health and social care needs of older people with learning disabilities and 'behaviours that challenge others', and family carers, and the co-ordination of support for this group. Work package 2 scoping and mapping exemplars of good practice - analysis of published service standards to assess excellence criteria, by mapping services, interviews (n = 30), survey (n = 9) and informal discussion with commissioners. Work package 3 ethnography of case studies of exemplar provision; independent supported living (n = 4); residential/nursing home (n = 2); day activities (n = 1), Shared Lives (n = 2). Fieldwork (20 days per model), interviews (n = 77) with older people with learning disabilities, family carers, support staff and commissioners. Work package 4 - co-producing and testing resources for older people with learning disabilities and their families involved interviews and focus groups with 36 people with learning disabilities, parents, and siblings, and experience-based co-design with 11 participants. Eight families evaluated the resources. Work package 5 - three stakeholder workshops co-produced service recommendations. Findings: The reviews confirmed an inadequate evidence base concerning the experiences and support of family carers and older people with learning disabilities and 'behaviours that challenge others'. Criteria of excellence were produced, and a shortlist of 15 services was identified for consideration in work package 3. The ethnographic work found that environmental, organisational and social factors were important, including supporting independence and choice about who people live with, matching staff to people, consistent relationships and adapting to ageing. Practices of institutionalisation were observed. In work package 4, we found that families were worried about the future and unsupported to explore options. 'Planning Ahead' cards and a booklet to record discussions were produced, and the evaluation was positively rated. Finally, formative discussion informed recommendations. Outputs include training packages, a carers' forum, a film, a podcast and academic papers. Conclusions: There is little focus on older people with learning disabilities and family carers. Services vary in their approach to planning for older-age support. Families are unsupported to plan, leaving people without choice. 'Behaviours that challenge others' was found to be unhelpful terminology. Recommendations: A new strategy is recommended for older people with learning disabilities and family carers that encompasses commissioning practices, professional input and peer learning, proactive support in ageing well and excellent service design. Limitations: The COVID-19 pandemic created recruitment challenges. Reliance on providers for recruitment resulted in a lack of diversity in work package 3. Families' plans, and therefore change, may be frustrated by insufficient service resources. Future work: Given the lack of focus in this area, there is a range of future work to consider: experiences of older people with learning disabilities from diverse ethnic backgrounds; supporting people to age and die 'in place'; best practice regarding designing/commissioning services, including housing; the role of social workers; access to nature; accessing mainstream support; and evaluation of the 'Planning Ahead' cards. Trial registration: This trial is registered as ISRCTN74264887. Funding: This award was funded by the National Institute for Health and Care Research (NIHR) Health and Social Care Delivery Research programme (NIHR award ref: NIHR129491) and is published in full in Health and Social Care Delivery Research; Vol. 12, No. 16. See the NIHR Funding and Awards website for further award information.

People with learning disabilities are living longer, but most live with their families, who are also getting older. This is because there are not enough suitable places for people with learning disabilities to live, and family carers worry that the person will not get the right support and have a good life. Our research aimed to improve support for people with learning disabilities and their family carers to plan ahead for a good life. We focused on people who are labelled with 'behaviours that challenge others'. We read what has been written about this area. We looked for and found examples of excellent support for older people with learning disabilities. Researchers and people with learning disabilities and family carers spent time hanging out with people where they live or spend their days to see what support they get. Then we had three meetings with everyone involved and discussed our research findings with people with learning disabilities, family carers, and professionals. We found that people can be supported to live good lives as they grow older. This can be living alone or with people they choose, and it means having staff they like and who like them and being supported to be active. However, we found that ageing of people with learning disabilities is often ignored, and some people were not living good lives. We also found that the label of 'behaviours that challenge others' is unhelpful. We worked with people with learning disabilities and family carers to make a set of cards with pictures and questions to help people plan ahead for a good life. We produced resources and made recommendations to create a new plan for older people with learning disabilities to support people to lead good lives. This is very important because there is a lack of attention to and support for people with learning disabilities as they age.

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BACKGROUND: Sexual and gender minority youth are at greater risk of compromised mental health than their heterosexual and cisgender peers. This is considered to be due to an increased burden of stigma, discrimination, or bullying resulting in a heightened experience of daily stress. Given the increasing digital accessibility and a strong preference for web-based support among sexual and gender minority youth, digital interventions are a key means to provide support to maintain their well-being. OBJECTIVE: This paper aims to explicate the co-design processes and underpinning logic of Oneself, a bespoke web-based intervention for sexual and gender minority youth. METHODS: This study followed a 6-stage process set out by Hagen et al (identify, define, position, concept, create, and use), incorporating a systematic scoping review of existing evidence, focus groups with 4 stakeholder groups (ie, sexual and gender minority youth, professionals who directly support them, parents, and UK public health service commissioners), a series of co-design workshops and web-based consultations with sexual and gender minority youth, the appointment of a digital development company, and young adult sexual and gender minority contributors to create content grounded in authentic experiences. RESULTS: Oneself features a welcome and home page, including a free accessible to all animation explaining the importance of using appropriate pronouns and the opportunity to create a user account and log-in to access further free content. Creating an account provides an opportunity (for the user and the research team) to record engagement, assess users' well-being, and track progress through the available content. There are three sections of content in Oneself focused on the priority topics identified through co-design: (1) coming out and doing so safely; (2) managing school, including homophobic, biphobic, or transphobic bullying or similar; and (3) dealing with parents and families, especially unsupportive family members, including parents or caregivers. Oneself's content focuses on identifying these as topic areas and providing potential resources to assist sexual and gender minority youth in coping with these areas. For instance, Oneself drew on therapeutic concepts such as cognitive reframing, stress reduction, and problem-solving techniques. There is also a section containing relaxation exercises, a section with links to other recommended support and resources, and a downloads section with more detailed techniques and strategies for improving well-being. CONCLUSIONS: This study contributes to research by opening up the black box of intervention development. It shows how Oneself is underpinned by a logic that can support future development and evaluation and includes diverse co-designers. More interactive techniques to support well-being would be beneficial for further development. Additional content specific to a wider range of intersecting identities (such as care-experienced Asian sexual and gender minority youth from a minority faith background) would also be beneficial in future Oneself developments. INTERNATIONAL REGISTERED REPORT IDENTIFIER (IRRID): RR2-10.2196/31036.

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Under International Health Regulations from 2005, a human infection caused by a novel influenza A virus variant is considered an event that has potential for high public health impact and is immediately notifiable to the World Health Organisation. We here describe the clinical, epidemiological and virological features of a confirmed human case of swine influenza A(H1N2)v in England detected through community respiratory virus surveillance. Swabbing and contact tracing helped refine public health risk assessment, following this unusual and unexpected finding.

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Being sexually coerced can have long-lasting psychological impacts on victims; with perpetration strongly predicted by elevated psychopathic traits. Owing to recent legislative developments in the United Kingdom that criminalize coercive control under the Domestic Abuse Act (2021), this study offers a timely investigation into the mechanisms of sexual coercion in domestic abuse across sexual abuse and coercive control. We used moderation analysis (n = 405) to investigate whether sexual coercion proclivity was predicted by facets of atypical sexuality (non-clinical elevated levels of sex drive, sexual sadism, and sexual masochism), and whether this relationship was moderated by psychopathic personality traits specifically the factor one components, which encompasses interpersonal and affective characteristics. Psychopathic personality traits significantly moderated the positive association between sex drive and sexual coercion proclivity, and between sexual sadism and sexual coercion proclivity in males (but not females), but psychopathic personality traits had no such moderating effect in the sexual masochism model. Results are discussed in terms of identifying risk factors of sexual coercion within a general population sample and international application. Open data and a preprint of this paper are available at [https://osf.io/xkcah/?view_only=134ff9c93ad24ba286515b348ce79c0c].

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Background: This study explored whether or not, and how, terminally ill patients from ethnically diverse backgrounds and their family caregivers think ahead about deterioration and dying, and explored their engagement with health-care professionals in end-of-life care planning. Objective: The aim was to address the question, what are the barriers to and enablers of ethnically diverse patients, family caregivers and health-care professionals engaging in end-of-life care planning? Design: This was a qualitative study comprising 18 longitudinal patient-centred case studies, interviews with 19 bereaved family caregivers and 50 public and professional stakeholder responses to the findings. Setting: The study was set in Nottinghamshire and Leicestershire in the UK. Results: Key barriers - the predominant stance of patients was to live with hope, considering the future only in terms of practical matters (wills and funerals), rather than the business of dying. For some, planning ahead was counter to their faith. Health-care professionals seemed to feature little in people's lives. Some participants indicated a lack of trust and experienced a disjointed system, devoid of due regard for them. However, religious and cultural mores were of great importance to many, and there were anxieties about how the system valued and enabled these. Family duty and community expectations were foregrounded in some accounts and concern about being in the (un)care of strangers was common. Key enablers - effective communication with trusted individuals, which enables patients to feel known and that their faith, family and community life are valued. Health-care professionals getting to 'know' the person is key. Stakeholder responses highlighted the need for development of Health-care professionals' confidence, skills and training, Using stories based on the study findings was seen as an effective way to support this. A number of behavioural change techniques were also identified. Limitations: It was attempted to include a broad ethnic diversity in the sample, but the authors acknowledge that not all groups could be included. Conclusions: What constitutes good end-of-life care is influenced by the intersectionality of diverse factors, including beliefs and culture. All people desire personalised, compassionate and holistic end-of-life care, and the current frameworks for good palliative care support this. However, health-care professionals need additional skills to navigate complex, sensitive communication and enquire about aspects of people's lives that may be unfamiliar. The challenge for health-care professionals and services is the delivery of holistic care and the range of skills that are required to do this. Future work: Priorities for future research: How can health professionals identify if/when a patient is 'ready' for discussions about deterioration and dying? How can discussions about uncertain recovery and the need for decisions about treatment, especially resuscitation, be most effectively conducted in a crisis? How can professionals recognise and respond to the diversity of faith and cultural practices, and the heterogeneity between individuals of beliefs and preferences relating to the end of life? How can conversations be most effectively conducted when translation is required to enhance patient understanding? Funding: This project was funded by the National Institute for Health and Care Research (NIHR) Health and Social Care Delivery Research programme and will be published in full in Health and Social Care Delivery Research; Vol. 11, No. X. See the NIHR Journals Library website for further project information.

This study explored the experiences of terminally ill patients and their families from different ethnic backgrounds and whether or not, and how, they think ahead about their health getting worse and about dying. It included 93 interviews from 18 patient case studies, 19 interviews with bereaved family caregivers and workshops with 50 public and professional stakeholders. Most patients and their family caregivers lived with hope, considering the future only in terms of practical matters of wills and funerals, rather than thinking about becoming less well and dying, which, for some, was counter to their beliefs. Family duty and community expectations stopped some participants from seeking additional support. However, when the family did not know how gravely ill the patient was, the patient's unexpected decline and death could be a devastating experience, with regret that they had been denied the chance to prepare and to make the best use of the time. Health-care professionals appear to feature little in people's lives. Some participants indicated a lack of trust and a poor experience of health care, but others talked of good experiences. People want care that is personal to them and compassionate. This is no different from people from white British backgrounds and supports the use of different physical, social, spiritual and psychological care frameworks used in palliative care to address the individual needs of patients and families. However, health-care professionals need additional skills to navigate complex, sensitive communication and enquire about aspects of people's lives that may be unfamiliar. Personalising care requires health-care professionals to get to 'know' the person and develop confidence and skills to support patients and their families. Training, using stories based on our interviews, was seen as an effective way to support this. Effective communication and information-sharing between trusted individuals was seen by stakeholders as important in providing better care.

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OBJECTIVE: Interventions to support patients' engagement in shared decision making (SDM) are lacking within high-grade glioma (HGG) healthcare. Consultation Planning, Recording and Summarising (CPRS) has shown evidence of increasing patient decision self-efficacy, reducing uncertainty, and regret of decisions. This is the first study of CPRS within a HGG population and delivered over serial medical consultations. METHOD: A one-arm prospective qualitative longitudinal design was used to evaluate the CPRS intervention and evaluated with participants at sequential clinic appointments depending on their care, in Edinburgh, Scotland. We report on serial semi structured interviews of 16 patients and their partners. RESULTS: Consultation planning before the consultation supported patients to feel known by strengthening the patient voice within the consultation. It prepared patients to actively participate in the consultation, despite the distressing nature of the content. Recording and summarising supported patients to understand their situation. The provision of a consultation record enabled accurate recall, a paced uptake of information and supported the family to feel fully informed. Ultimately, patients understood why decisions were being made rather than being part of making decisions. CONCLUSIONS: The CPRS intervention helped patients to understand and to feel known by increasing patient capacity for communication in the consultation, with support before, during, and after the consultation. The intervention focused on preparing patients for SDM but patients did not perceive that they had meaningful choices to make. Further research could look at the inclusion of patient decision aids to support this process.

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BACKGROUND: People with intellectual disabilities and behaviours that challenge others are living longer. This review aimed to explore what is known about the health and social care needs, experiences, service interventions and resources of and for this population as they transition to different care contexts in the UK. METHOD: A rapid scoping review of published and unpublished literature was conducted based on collaborative working with key stakeholders and using systematic methods of data searching, extraction and analysis. RESULTS: Consistent social work support, skilled staff, suitable accommodation, creative engagement with individuals and families to plan ahead, and timely access to quality healthcare are all required to promote successful transitions as people age, and to avoid unwanted/inappropriate transitions at points of crisis. CONCLUSIONS: More research is needed to assess the types of services that this population can and do access as they age, the quality of those services, and the extent to which local commissioners are planning ahead for people with intellectual disabilities and behaviours that challenge others.

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Robust population-based research has established that sexual and gender minority youths (SGMYs) are at an increased risk of mental ill-health, but there is a dearth of literature that seeks to explore how to best support SGMY mental wellbeing. This scoping review aims to identify findings related to coping strategies and/or interventions for building resilience and/or enhancing the mental wellbeing of SGMYs. PRISMA extension for scoping review (PRISMA-ScR) guidelines was utilized for this review. Studies were included if they were peer-reviewed papers containing primary data; reported psycho-social coping strategies for SGMY; were conducted with SGMYs in the adolescent age range; and were published in English. MEDLINE, Embase, and PsycINFO databases were searched. Of the 3692 papers initially identified, 68 papers were included with 24 intervention-focused studies of 17 unique interventions found. The most commonly cited therapeutic modality was cognitive behavioral therapy (CBT) (n = 11 studies). Despite the need to support the mental wellbeing of SGMYs, few interventions focused on this area and unique populations have been reported upon in the peer-reviewed literature. As a result, there is considerable potential to develop supports for SGMYs.

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BACKGROUND: Sexual and gender minority youth (SGMY) are at an increased risk of a range of mental health problems. However, few evidence-informed interventions have been developed specifically to support their mental well-being. Interventions that are evidence-informed for the general population and are fine-tuned specifically with SGMY in mind proffer considerable potential. A particular opportunity lies in the delivery of engaging interventions on the web, where the focus is on enhancing the coping skills and building the resilience of SGMY, in a way that is directly relevant to their experiences. On the basis of earlier work related to an intervention called Rainbow SPARX (Smart, Positive, Active, Realistic, X-factor thoughts), we seek to create a new resource, especially for SGMY in the United Kingdom. OBJECTIVE: This project has 3 main objectives. First, together with SGMY as well as key adult experts, we aim to co-design a media-rich evidence-informed web-based SGMY well-being prototype toolkit aimed at those aged between 13 and 19 years. Second, we will explore how the web-based toolkit can be used within public health systems in the United Kingdom by SGMY and potentially other relevant stakeholders. Third, we aim to conduct a preliminary evaluation of the toolkit, which will inform the design of a future effectiveness study. METHODS: The first objective will be met by conducting the following: approximately 10 interviews with SGMY and 15 interviews with adult experts, a scoping review of studies focused on psychosocial coping strategies for SGMY, and co-design workshops with approximately 20 SGMY, which will inform the creation of the prototype toolkit. The second objective will be met by carrying out interviews with approximately 5 selected adult experts and 10 SGMY to explore how the toolkit can be best used and to determine the parameters and user-generated standards for a future effectiveness trial. The final objective will be met with a small-scale process evaluation, using the think out loud methodology, conducted with approximately 10 SGMY. RESULTS: The study commenced on September 1, 2021, and data gathering for phase 1 began in October 2021. CONCLUSIONS: A considerable body of work has described the issues faced by the SGMY. However, there is a dearth of research seeking to develop interventions for SGMY so that they can thrive. This project aims to co-design such an intervention. TRIAL REGISTRATION: Research Registry Reference researchregistry6815; https://www.researchregistry.com/browse-the-registry#home/registrationdetails/609e81bda4a706001c94b63a/. INTERNATIONAL REGISTERED REPORT IDENTIFIER (IRRID): PRR1-10.2196/31036.

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BACKGROUND: There is a lack of evidence of the effect of cue-based feeding compared with scheduled feeding on important outcomes for preterm infants. OBJECTIVES: The objectives were as follows: (1) to describe the characteristics, components, theoretical basis and outcomes of approaches to feeding preterm infants transitioning from tube to oral feeding; (2) to identify operational policies, barriers and facilitators, and staff and parents' educational needs in neonatal units implementing cue-based feeding; (3) to co-produce an intervention for feeding preterm infants in response to feeding cues; (4) to appraise the willingness of parents and staff to implement and sustain the intervention; (5) to assess associated costs of implementing cue-based feeding; (6) to determine the feasibility and acceptability of a future trial; (7) to scope existing data-recording systems and potential outcome measures; and (8) to determine stakeholders' views of whether or not a randomised controlled trial of this approach is feasible. DESIGN: This was a mixed-methods intervention development and feasibility study comprising (1) a systematic review, case studies, qualitative research and stakeholder consensus; (2) the co-production of the intervention; (3) a mixed-methods feasibility study; and (4) an assessment of stakeholder preferences for a future evaluation. SETTING: Three neonatal units in the UK (two level 3 units and one level 2 unit). PARTICIPANTS: Developmentally normal, clinically stable preterm infants receiving enteral feeds (n = 50), parents (n = 15 pre intervention development; n = 14 in the feasibility study) and health-care practitioners (n = 54 pre intervention development; n = 16 in the feasibility study). INTERVENTION: An evidence-informed multicomponent intervention comprising training, a feeding protocol, feeding assessment tools, supplementary training materials [including posters, a film and a narrated PowerPoint (Microsoft Corporation, Redmond, WA, USA) presentation] and the 'Our Feeding Journey' document. MAIN OUTCOME MEASURES: The main outcome measures were recruitment and screening rates, infant weight gain, duration of the intervention, feeding outcomes, implementation outcomes (contextual facilitators and barriers, acceptability, adoption, appropriateness and fidelity) and stakeholder preferences for a future evaluation. RESULTS: The systematic review of 25 studies concluded that evidence in favour of cue-based feeding should be treated cautiously. The case studies and qualitative research highlighted contextual barriers to and facilitators of the implementation of cue-based feeding. The telephone survey found that many neonatal units are considering implementing cue-based feeding. We recruited 37% of eligible infants, and there was good retention in the study until discharge but a high loss to follow-up at 2 weeks post discharge. The mean number of days from intervention to transition to full oral feeding was 10.8, and the mean daily change in weight gain was 25 g. The intervention was acceptable to parents and staff, although there was dissatisfaction with the study documentation. Intervention training did not reach all staff. A cluster-randomised design with a composite outcome was suggested by stakeholders for a future study. LIMITATIONS: The intervention was available only in English. Intervention training did not reach all staff. There was low recruitment to qualitative interviews and observations. Only a small number of medical staff engaged in either the training or the interviews. CONCLUSIONS: It is feasible to implement a cue-based feeding intervention with improved training and documentation. Further work is needed to assess the feasibility of a future trial, noting evidence of existing lack of equipoise. FUTURE WORK: The next steps are to digitalise the intervention and conduct a survey of all neonatal units in the UK. STUDY REGISTRATION: This study is registered as PROSPERO CRD42018097317 and ISRCTN13414304. FUNDING: This project was funded by the National Institute for Health Research (NIHR) Health Technology Assessment programme and will be published in full in Health Technology Assessment; Vol. 25, No. 74. See the NIHR Journals Library website for further project information.

Preterm babies who are ready to progress from tube feeding to oral feeding are usually fed according to a fixed schedule. Scheduled feeding protocols set a minimum corrected gestational age at which oral feeding may commence, and specify the rate of change from tube to oral feeding. Scheduled feeding also sets the volume and timing of each feed. A few small studies show that feeding babies according to their cues might have benefits for them and their parents; for example, babies may be discharged from hospital sooner. Cue-based feeding may help parents to understand the needs of their baby and be more involved in their care. Examples of hunger cues are mouthing movements, bringing hands to mouth and sucking. Examples of stop cues are falling asleep and stopping sucking. We developed a cue-based feeding intervention and tested it in three neonatal units to see if a large trial could be done and if parents and staff liked the intervention. We reviewed previous research, visited three hospitals that use cue-based feeding and interviewed parents and staff about their experiences of feeding preterm babies. We developed the intervention with parents and staff. The intervention included a feeding protocol, training for parents and staff, and a feeding record. Parents and staff liked most parts of the intervention. The training did not reach all staff, and staff and parents found it time-consuming to record every feed. Many parents and staff thought that cue-based feeding was better for babies, and parents thought that neonatal units should change to cue-based feeding. We discussed our findings with parents, staff and research experts. Based on their ideas, we recommend that the intervention is developed into an app (application) and that all neonatal units in the UK are surveyed to find out if they use cue-based feeding and if they would agree to be part of a large trial.

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BACKGROUND: Daytime urinary incontinence (UI) is common in childhood and often persists into adolescence. UI in adolescence is associated with a range of adverse outcomes, including depressive symptoms, peer victimization, poor self-image, and problems with peer relationships. The first-line conservative treatment for UI is bladder training (standard urotherapy) that aims to establish a regular fluid intake and a timed schedule for toilet visits. The success of bladder training is strongly dependent on good concordance, which can be challenging for young people. OBJECTIVE: This paper aims to describe the development of a smartphone app (URApp) that aims to improve concordance with bladder training in young people aged 11 to 19 years. METHODS: URApp was designed by using participatory co-design methods and was guided by the person-based approach to intervention design. The core app functions were based on clinical guidance and included setting a daily drinking goal that records fluid intake and toilet visits, setting reminders to drink fluids and go to the toilet, and recording progress toward drinking goals. The development of URApp comprised the following four stages: a review of current smartphone apps for UI, participatory co-design workshops with young people with UI for gathering user requirements and developing wireframes, the development of a URApp prototype, and the user testing of the prototype through qualitative interviews with 23 young people with UI or urgency aged 10 to 19 years and 8 clinicians. The app functions and additional functionalities for supporting concordance and behavior change were iteratively optimized throughout the app development process. RESULTS: Young people who tested URApp judged it to be a helpful way of supporting their concordance with a timed schedule for toilet visits and drinking. They reported high levels of acceptability and engagement. Preliminary findings indicated that some young people experienced improvements in their bladder symptoms, including a reduction in UI. Clinicians reported that URApp was clinically appropriate and aligned with the best practice guidelines for bladder training. URApp was deemed age appropriate, with all clinicians reporting that they would use it within their own clinics. Clinicians felt URApp would be of particular benefit to patients whose symptoms were not improving or those who were not engaging with their treatment plans. CONCLUSIONS: The next stage is to evaluate URApp in a range of settings, including pediatric continence clinics, primary care, and schools. This research is needed to test whether URApp is an effective (and cost-effective) solution for improving concordance with bladder training, reducing bladder symptoms, and improving the quality of life.

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PURPOSE: The purpose of the study is to examine how Non-Executive Directors (NEDs) in the English National Health Service (NHS) commissioning bodies experienced their role and contribution to governance. DESIGN/METHODOLOGY/APPROACH: Semi-structured interviews were conducted with a purposive sample of 31 NEDs of Primary Care Trusts (PCTs) and 8 Clinical Commissioning Group (CCG) NEDs. Framework analysis was applied using a conceptualisation of governance developed by Newman, which has four models of governance: the hierarchy, self-governance, open systems and rational goal model. FINDINGS: NEDs saw themselves as guardians of the public interest. NEDs' power is a product of the explicit levers set out in the constitution of the board, but also how they choose to use their knowledge and expertise to influence decisions for, as they see it, the public good. They contribute to governance by holding to account executive and professional colleagues, acting largely within the rational goal model. CCG NEDs felt less powerful than in those in PCTs, operating largely in conformance and representational roles, even though government policy appears to be moving towards a more networked, open systems model. ORIGINALITY/VALUE: This is the first in-depth study of NEDs in English NHS local commissioning bodies. It is of value in helping to inform how the NED role could be enhanced to make a wider contribution to healthcare leadership as new systems are established in the UK and beyond.

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OBJECTIVE: UK healthcare policy for improving cancer outcomes supports participation of patients in care decisions with clinicians. Consultation Planning, Recording and Summarising (CPRS) has shown evidence of increasing patient decision self-efficacy, reducing uncertainty, and regret of decisions. This is the first trial of CPRS within the colorectal cancer population and delivered over serial medical consultations. METHODS: This randomised controlled trial compared usual care to the addition of CPRS over consecutive oncology consultations with newly diagnosed colorectal cancer (CRC) patients in Edinburgh, Scotland. The study primarily evaluated patients' perception of their decision self-efficacy, preparation for decision-making, decisional conflict, and decisional regret, with secondary measures of anxiety and depression. RESULTS: Compared with usual care, overall, the intervention group reported significantly higher decision self-efficacy (P = 0.001) and preparation for decision-making (P < 0.001) and significantly lower decisional conflict (P = 0.018) and regret (P = 0.039). The repeated intervention patients felt significantly better prepared for each consultation (P < 0.05); reported higher DSE before (P = 0.05) and after (P = 0.031) consultation one, and after consultation three (P = 0.004); and reported lower decisional conflict after consultation two (P = 0.007). Analyses comparing groups over time on decisional variables and anxiety and depression were underpowered because of attrition. CONCLUSIONS: Among colorectal cancer patients, CPRS was associated with decisional benefits before and after each consultation and 3 months after the last consultation. It appears that CPRS patients began their first medical consultation on a better trajectory but did not widen the gap over time. More research is needed on the benefits of CPRS being administered once or consecutively.

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BACKGROUND: Lesbian, gay, bisexual, and transgender (LGBT) youth and other young people diverse in terms of their sexuality and gender (LGBT+) are at an elevated risk of mental health problems such as depression. Factors such as isolation and stigma mean that accessing mental health services can be particularly challenging for LGBT+ young people, and previous studies have highlighted that many prefer to access psychological support on the Web. Research from New Zealand has demonstrated promising effectiveness and acceptability for an LGBT+ focused, serious game-based, computerized cognitive behavioral therapy program, Rainbow Smart, Positive, Active, Realistic, X-factor thoughts (SPARX). However, there has been limited research conducted in the area of electronic therapy (e-therapy) for LGBT+ people. OBJECTIVE: This study aimed to explore how and why LGBT+ young people use the internet to support their mental health. This study also sought to explore LGBT+ young people's and professionals' views about e-therapies, drawing on the example of Rainbow SPARX. METHODS: A total of 3 focus groups and 5 semistructured interviews were conducted with 21 LGBT+ young people (aged 15-22 years) and 6 professionals (4 health and social care practitioners and 2 National Health Service commissioners) in England and Wales. A general inductive approach was used to analyze data. RESULTS: LGBT+ youth participants considered that the use of the internet was ubiquitous, and it was valuable for support and information. However, they also thought that internet use could be problematic, and they highlighted certain internet safety and personal security considerations. They drew on a range of gaming experiences and expectations to inform their feedback about Rainbow SPARX. Their responses focused on the need for this e-therapy program to be updated and refined. LGBT+ young people experienced challenges related to stigma and mistreatment, and they suggested that strategies addressing their common challenges should be included in e-therapy content. Professional study participants also emphasized the need to update and refine Rainbow SPARX. Moreover, professionals highlighted some of the issues associated with e-therapies needing to demonstrate effectiveness and challenges associated with health service commissioning processes. CONCLUSIONS: LGBT+ young people use the internet to obtain support and access information, including information related to their mental health. They are interested in LGBT-specific e-therapies; however, these must be in a contemporary format, engaging, and adequately acknowledge the experiences of LGBT+ young people.

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UNICEF Baby Friendly Initiative (BFHI) is the global standard for maternity and community services requiring all practitioners to be trained to support mothers in the essential skills of supporting positioning and attachment, and hand expression. These studies aim to rigorously assess knowledge in nurses, midwives, and doctors in these skills, tested before and after watching short videos demonstrating these skills. Practitioners were attending BFHI education, and the video study was additional. In Phase 1 clinicians in England were randomised to one of two videos (practitioner role play or clinical demonstration). The results showed improvements in knowledge and confidence, and a preference for clinical demonstration by mothers and infants. The clinical demonstration video was evaluated in China in Phase 2 where expert trainers viewed the video after completing the BHFI workshop, and in Phase 3 practitioners viewed the video before the BHFI workshop. Phase 2 with expert trainers only showed improvement in knowledge of hand expression but not positioning and attachment. In Phase 3 clinicians showed improved knowledge for both skills. In all Phases there were statistically significant improvements in confidence in practice in both skills. Viewing short videos increased knowledge, particularly about teaching hand expression, and confidence in both skills.

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In the United Kingdom, chronic pain affects approximately 28 million adults, creating significant healthcare and socio-economic costs. The aim was to establish whether a programme designed to use best evidence of content and delivery will be used by patients with significant musculoskeletal pain problems. Of 528 patients recruited, 376 participated in a 7-week-long group-based self-management programme (SMP) co-delivered by clinical and lay tutors. Of these, 308 patients (mean age, 53 years; 69% females, 94% White) completed at least five SMP sessions. Six months after pre-course assessment, participants reported significantly improved patient activation and health status, lower depression and anxiety scores, decreased pain severity and interference, and improved self-management skills. There were no improvements in health state and pain self-efficacy. Uptake rate was 71% and completion 82%. The results should be of value to commissioners of pathways of care for the large numbers of patients attending the English NHS for chronic musculoskeletal pain.

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BACKGROUND: Despite almost all babies being breastfed initially, the exclusive breastfeeding rate at six months is less than 30% in China. Improving professionals' knowledge and practical skill is a key government strategy to increase breastfeeding rates. This study aimed to test the effectiveness of a breastfeeding DVD training method for clinicians on improving their knowledge and confidence in the breastfeeding support skills of teaching mothers Positioning and Attachment (P & A) and Hand Expression (HE). METHODS: A randomised controlled trial was conducted in three hospitals in Zhejiang province, China in 2014. Participants were recruited before their routine breastfeeding training course and randomly allocated to intervention group (IG) and control group (CG). The 15 min "Breastfeeding: Essential Support Skills DVD" was the intervention for IG and a vaginal delivery DVD was used for CG. All participants completed questionnaires of job information, knowledge and confidence in the two skills before (baseline) and immediately after viewing the DVD (post DVD). RESULTS: Out of 210 participants, 191 completed knowledge assessments before and after watching the DVD (IG n = 96, CG n = 95), with the response rate of 91.0%. At baseline, there are no significant differences in job variables, total knowledge scores and confident scores. The total knowledge score significantly increased post-DVD for IG (pre-DVD: M = 5.39, SD = 2.03; post-DVD: M = 7.74, SD = 1.71; t (95) = - 10.95, p < 0.01), but no significant change in total knowledge score for CG between pre- and post-DVD (pre-DVD: M = 5.67, SD = 1.70; post-DVD: M = 5.56, SD = 1.63; t (94) = 0.85). The total confidence scores were significantly higher post-DVD than pre-DVD in IG (pre-DVD: M = 66.49, SD = 11.27; post- DVD: M = 71.81, SD = 9.33; t (68) = - 4.92, p < 0.01), but no significant difference was seen in CG between pre- and post-DVD total confidence scores (pre-DVD: M = 68.33, SD = 11.08; post-DVD: M = 68.35, SD = 11.40; t (65) = - 0.25). Personal and job variables did not mediate these effects. CONCLUSIONS: The breastfeeding training DVD improved professionals' knowledge and confidence of the two breastfeeding support skills. However, the effect on professionals' practice and on breastfeeding outcomes needs to be examined in the future.

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