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Background: Previous evidence suggests home-based dialysis to be more cost-effective than unit-based or hospital-based dialysis. However, previous analyses to quantify the costs of different dialysis modalities have used varied perspectives, different methods, and required assumptions due to lack of available data. The National Institute for Health and Care Excellence reports uncertainty about the differences in costs between home-based and unit-based dialysis. This uncertainty limits the ability of policy makers to make recommendations based on cost effectiveness, which also impacts on the ability of budget holders to model the impact of any service redesign and to understand which therapies deliver better value. The aim of our study was to use a combination of top-down and bottom-up costing methods to determine the direct medical costs of different dialysis modalities in one UK nation (Wales) from the perspective of the National Health Service (NHS). Methods: Detailed hybrid top-down and bottom-up micro-costing methods were applied to estimate the direct medical costs of dialysis modalities across Wales. Micro-costing data was obtained from commissioners of the service and from interviews with renal consultants, nurses, accountants, managers and allied health professionals. Top-down costing information was obtained from the Welsh Renal Clinical Network (who commission renal services across Wales) and the Welsh Ambulance Service Trust. Results: The annual direct cost per patient for home-based modalities was £16,395 for continuous ambulatory peritoneal dialysis (CAPD), £20,295 for automated peritoneal dialysis (APD) and £23,403 for home-based haemodialysis (HHD). The annual cost per patient for unit-based modalities depended on whether or not patients required ambulance transport. Excluding transport, the cost of dialysis was £19,990 for satellite units run in partnership with independent sector providers and £23,737 for hospital units managed and staffed by the NHS. When ambulance transport was included, the respective costs were £28,931 and £32,678, respectively. Conclusion: Our study is the most comprehensive analysis of the costs of dialysis undertaken thus far in the United Kingdom and clearly demonstrate that CAPD is less costly than other dialysis modalities. When ambulance transport costs are included, other home therapies (APD and HHD) are also less costly than unit-based dialysis. This detailed analysis of the components that contribute to dialysis costs will help inform future cost-effectiveness studies, inform healthcare policy and drive service redesign.

Background: The mental health and wellbeing of care-experienced children and young people (i.e. foster care, kinship care, residential care) is poorer than non-care-experienced populations. The Care-experienced cHildren and young people’s Interventions to improve Mental health and wEll-being outcomes Sytematic review (CHIMES) systematic review aimed to synthesise the international evidence-base for interventions targeting subjective wellbeing, mental health and suicide amongst care-experienced young people aged ≤ 25 years. Methods: For the first stage of the review we constructed an evidence map identifying key clusters and gaps in interventions and evaluations. Studies were identified through 16 electronic databases and 22 websites, in addition to expert recommendations, citation tracking and screening of relevant systematic reviews. We charted interventions and evaluations with a summary narrative, tables and infographics. Results: In total, 64 interventions with 124 associated study reports were eligible. The majority of study reports were from the USA (n=77). Interventions primarily target children and young people’s skills and competencies (n=9 interventions), the parental functioning and practices of carers (n=26), or a combination of the two (n=15). While theoretically under-specified, interventions are largely informed by theories of Attachment, Positive Youth Development, and Social Learning Theory. Current evaluations prioritise outcome (n=86) and process (n=50), with a paucity of study reports including theoretical descriptions (n=24) or economic evaluations (n=1). Interventions most frequently target outcomes related to mental health, neurodevelopment and behavioural outcomes, notably total social, emotional and behavioural problems (n=48 interventions) and externalizing problem behaviours (n=26). There are a limited number of interventions targeting subjective wellbeing or suicide-related outcomes. Conclusions: Future intervention development might focus on structural-level intervention theories and components, and target outcomes related to subjective wellbeing and suicide. In accordance with current methodological guidance for intervention development and evaluation, research needs to integrate theoretical, outcome, process and economic evaluation in order to strengthen the evidence-base. PROSPERO Registration: CRD42020177478

IntroductionPatient and public involvement (PPI) is increasingly seen as something that is integral to research and of importance to research funders. There is general recognition that PPI is the right thing to do for both moral and practical reasons. The aim of this review of reviews is to examine how PPI can be done ‘properly’ by looking at the evidence that exists from published reviews and assessing it against the UK Standards for Public Involvement in Research, as well as examining the specific features of population health research that can make PPI more challenging.MethodsA review of reviews was carried out following the 5-stage Framework Synthesis method.ResultsIn total 31 reviews were included. There is a lack of current research or clarity around Governance and Impact when findings are mapped against UK Standards for Public Involvement in Research. It was also clear that there is little knowledge around PPI with under-represented groups. There are gaps in knowledge about how to ensure key specific attributes of population health research are addressed for PPI team members – particularly around how to deal with complexity and the data-driven nature of the research. Two tools were produced for researchers and PPI members to further improve their PPI activity within population health research and health research more generally: A framework of recommended actions to address PPI in population health research, and guidance on integrating PPI based on the UK Standards for Public Involvement in Research.ConclusionsFacilitating PPI in population health research is challenging due to the nature of this type of research and there is far less evidence on how to do PPI well in this context. The tools can help researchers identify key aspects of PPI that can be integrated when designing PPI within projects. Findings also highlight specific areas where more research or discussion is needed.

BackgroundLiving kidney organ donors offer a cost-effective alternative to deceased organ donation. They enable patients with life-threatening conditions to receive grafts that would otherwise not be available, thereby creating space for other patients waiting for organs and contributing to reducing overall waiting times for organs. There is an emerging consensus that an increase in living donation could contribute even more than deceased donation to reducing inequalities in organ donation between different population sub-groups in England. Increasing living donation is thus a priority for National Health Service Blood and Transplant (NHSBT) in the United Kingdom.MethodsUsing the random forest model, a machine learning (ML) approach, this study analyzed eight waves of repeated cross-sectional survey data collected from 2017 to 2021 (n = 14,278) as part of the organ donation attitudinal tracker survey commissioned by NHSBT in England to identify and help predict key factors that inform public intentions to become living donors.ResultsOverall, around 58.8% of the population would consider donating their kidney to a family member (50.5%), a friend (28%) or an unknown person (13.2%). The ML algorithm identified important factors that influence intentions to become a living kidney donor. They include, in reducing order of importance, support for organ donation, awareness of organ donation publicity campaigns, gender, age, occupation, religion, number of children in the household, and ethnic origin. Support for organ donation, awareness of public campaigns, and being younger were all positively associated with predicted propensity for living donation. The variable importance scores show that ethnic origin and religion were less important than the other variables in predicting living donor intention.ConclusionFactors influencing intentions to become a living donor are complex and highly individual in nature. Machine learning methods that allow for complex interactions between characteristics can be helpful in explaining these decisions. This work has identified important factors and subgroups that have higher propensity for living donation. Interventions should target both potential live donors and recipients. Research is needed to explore the extent to which these preferences are malleable to better understand what works and in which contexts to increase live organ donation.

BackgroundPreceded by a national media campaign, in May 2020, England switched to a soft opt-out system of organ donation which rests on the assumption that individuals meeting specific criteria have consented to organ donation unless they have expressed otherwise. We aimed to learn more about how the changes were communicated, how people responded and any discrepancies between key messages and how they were interpreted by the public.MethodsSummative content analysis of 286 stories and related reader-generated comments in leading UK online news sources (April 2019 to May 2021). Further detailed thematic analysis of 21 articles with reader-generated content, complemented by thematic content analysis coding of all 286 stories.ResultsMost media coverage on both organ donation and the law change was positive, with little variation over time or between publications. The importance of organ donation, benefits of the law change, and emotive stories (often involving children) of those who had donated an organ described as “superheroes” or those who had received organs as benefiting from a “miracle” were frequently cited. In contrast, reader-generated comments were markedly more negative, for example, focusing on loss of individual freedom and lack of trust in the organ donation system. Commentators wished to be able to choose who their organs were donated to, were dismissive and blaming towards minority ethnic groups, including undermining legitimate worries about the compatibility of organ donation with religious beliefs and end of life cultural norms, understanding and acceptance of brain-stem death and systemic racism. Misinformation including use of inflammatory language was common.ConclusionThe portrayal of donors and recipients as extraordinary is unlikely to help to normalise organ donation. Undermining legitimate concerns, in particular those from ethnic minorities, can alienate and encourage harmful misinformation in underrepresented groups. The discrepancies between the tone of the articles and the readers comments suggests a lack of trust across the public, health, policy and media outlets. Easily accessible, ongoing and tailored sources are needed to mitigate misinformation and disinformation and ensure key messages are better understood and accepted in order to realise the ambitions of soft opt-out organ donation policies.

We aimed to identify migraine treatment features preferred by patients and treatment outcomes most valued by patients.The values and preferences of people living with migraine are critical for both the choice of acute therapy and management approach of migraine.We conducted a qualitative evidence synthesis. Two reviewers independently selected studies, appraised methodological quality, and undertook a framework synthesis. We developed summary of findings tables following the approach of Grading of Recommendations, Assessment, Development and Evaluations Confidence in the Evidence from Reviews of Qualitative Research to assess confidence in the findings.Of 1691 candidate references, we included 19 studies (21 publications) involving 459 patients. The studies mostly recruited White women from North America (11 studies) and Europe (8 studies). We identified eight themes encompassing features preferred by patients in a migraine treatment process. Themes described a treatment process that included shared decision-making, a tailored approach, trust in health-care professionals, sharing of knowledge and diversity of treatment options, a holistic approach that does not just address the headache, ease of communication especially for complex treatments, a non-undermining approach, and reciprocity with mutual respect between patient and provider. In terms of the treatment itself, seven themes emerged including patients' preferences for nonpharmacologic treatment, high effectiveness, rapidity of action, long-lasting effect, lower cost and more accessibility, self-management/self-delivery option that increases autonomy, and a mixed preference for abortive versus prophylactic treatments. The treatment outcomes that have high value to patients included maintaining or improving function; avoiding side effects, potential for addiction to medications, and pain reoccurrence; and avoiding non-headache symptoms such as nausea, vomiting, and sensitivity to light or sounds.Patient values and preferences were individually constructed, varied widely, and could be at odds with conventional medical perspectives and evidence of treatment effects. Considering the availability of numerous treatments for acute migraine, it is necessary that decision-making incorporates patient values and preferences identified in qualitative research. The findings of this qualitative synthesis can be used to facilitate an individually tailored approach, strengthen the patient-health-care system relationship, and guide choices and decisions in the context of a clinical encounter or a clinical practice guideline.

Although child mortality has decreased over the last few decades, around 4,500 infants and children die in the UK every year, many of whom require palliative care. There is, however, little evidence on paediatric end-of-life care services. The current National Institute for Health and Care Excellence (NICE) guidance provides recommendations about what should be offered, but these are based on low quality evidence. The ENHANCE study aims to identify and investigate the different models of existing end-of-life care provision for infants, children, and young people in the UK, including an assessment of the outcomes and experiences for children and parents, and the cost implications to families and healthcare providers.This mixed methods study will use three linked workstreams and a cross-cutting health economics theme to examine end-of-life care models in three exemplar clinical settings: infant, children and young adult cancer services (PTCs), paediatric intensive care units (PICUs), and neonatal units (NNUs).Workstream 1 (WS1) will survey current practice in each setting and will result in an outline of the different models of care used. WS2 is a qualitative comparison of the experiences of staff, parents and patients across the different models identified. WS3 is a quantitative assessment of the outcomes, resource use and costs across the different models identified.Results from this study will contribute to an understanding of how end-of-life care can provide the greatest benefit for children at the end of their lives. It will also allow us to understand the likely benefits of additional funding in end-of-life care in terms of patient outcomes.

ObjectiveTo determine intervention effects and synthesise qualitative research that explored women with or at high risk of kidney disease experiences of shared decision-making in relation to their reproductive health, family planning options and pregnancy.DesignA systematic review of interventions and a qualitative evidence synthesis.Data sourcesWe searched Cochrane, CINAHL, MEDLINE, Scopus, ProQuest, Elsevier, PubMed, ScienceDirect and Web of Science.Eligibility criteriaShared decision-making interventions and qualitative studies related to reproductive health involving women with or at high risk of kidney disease published from 1980 until January 2021 in English (clinical settings, global perspective).Data extraction and synthesisTitles were screened against the inclusion criteria and full-text articles were reviewed by the whole team. Framework synthesis was undertaken.ResultsWe screened 1898 studies. No evidence-based interventions were identified. 18 qualitative studies were included, 11 kidney disease-specific studies and 7 where kidney disease was a common comorbidity. Women frequently felt unprepared and uninformed about their reproductive options. Conversations with healthcare professionals were commonly described as frustrating and unhelpful, often due to a perceived loss of autonomy and a mismatch in preferences and life goals. Examples of shared decision-making were rare. Kidney disease exacerbated societal expectations of traditional gender roles (eg, wife, mother, carer) including capability to have children and associated factors, for example, parenting, (sexual) relationships, body image and independent living (including financial barriers to starting a family). Local interventions were limited to types of counselling. A new health system model was developed to support new interventions.ConclusionThere is a clear need to establish new interventions, test those already in development and develop new clinical guidance for the management of women with or at high risk of kidney disease in relation to their reproductive health, including options to preserve fertility earlier. Other health conditions with established personalised reproductive care packages, for example, cancer, could be used to benchmark kidney practice alongside the new model developed here.

Aim Emergent infectious diseases often lack medical treatment or preventive vaccines, thus requiring non-pharmaceutical interventions such as quarantine to reduce disease transmission. Quarantine, defined as the separation and restriction of movement of healthy people who have potentially been exposed to the disease, remains contentious especially when the risks and benefits are not fully discussed and not effectively communicated to the people by the organizations who impose this public health measure. Subject and methods A qualitative evidence synthesis was conducted to examine the phenomenon of adherence to quarantine focused on the following questions: What strategies affect adherence to quarantine? What are the barriers and facilitators to quarantine acceptance? What benefits and harms of quarantine have been described or measured? Results The evidence synthesis produced 18 findings assessed with high confidence. The findings were used to construct a conceptual framework for inter- and within-organization coordination and public communication that includes the following topics for consideration: desired orientation for implementation; population demographics; perceptions of messages; prior acceptance of quarantine; likelihood of impacts of quarantine; perceptions of health infrastructure; and perceptions of policy importance. Conclusion The findings and conceptual framework can guide development of effective non-pharmaceutical interventions and as such have direct relevance to public health policy and decision-making for intervening in emergent infectious diseases outbreak such as the ongoing COVID-19 pandemic.

IntroductionThere is growing recognition that in order to remain sustainable, the UK’s National Health Service must deliver the best patient outcomes within available resources. This focus on outcomes relative to cost is the basis of value-based healthcare (VBHC) and has led to interest in the recording of patient-reported outcome measures (PROMs) to measure patient perspectives on the impact of a health condition on their lives. Every health board in Wales is now required to collect PROMS as part of routine care. We will evaluate the VBHC programme implemented in a lead health board. The study aim is to understand what works about PROMs collection, for whom, in what contexts and why in a VBHC context. In addition, we will assess the social value of integrating PROMs collection into routine care.Methods and analysisA three-stage mixed-methods study comprising a realist evaluation integrated with social return on investment (SROI) analysis across four conditions; Parkinson’s disease, epilepsy, heart failure and cataract surgery. Workstream 1: Development of logic models, informed by a scoping review, documentary analysis, patient and public involvement (PPI), staff and key stakeholder engagement. Workstream 2: Realist evaluation building on multiple data sources from stages 1 to 3 to test and refine the programme theories that arise from the logic model development. Workstream 3: SROI analysis using interview data with patients, staff and carers, stakeholder and PPI engagement, anonymised routinely collected data, and questionnaires to populate a model that will explore the social value generated by the implementation of PROMs. Findings across stages will be validated with key stakeholders.Ethics and disseminationThe study is approved by Wales Research Ethics Committee #5 (22/WA/0044). Outcomes will be shared with key stakeholders, published in peer-reviewed journals and presented at national and international conferences.This is an open access article distributed in accordance with the Creative Commons Attribution Non Commercial (CC BY-NC 4.0) licence, which permits others to distribute, remix, adapt, build on this work non-commercially, and license their derivative works on different terms, provided the original work is properly cited, appropriate credit is given, any changes made indicated, and the use is non-commercial.

Background: In the UK 1500 kidney transplants fail each year. 2% of living-donor transplants and 5% of deceased-donor transplants fail within a year of transplantation. Many decisions need to be made when a kidney transplant fails, including whether the transplant should be removed, and which immunosuppression medication should be stopped. There is limited evidence on which to base these decisions. We do not understand how decisions are made in the absence of good evidence, and there is national variation in practice. Aims: The overall aim is to develop a theory of patient and clinician transplant failure behaviours and decisions that will inform the design of a Randomised Controlled Trial (RCT) to evaluate treatments to optimise the management of transplant failure and improve outcomes for patients and their families. Methods: In a UK setting, we will develop a Constructivist Grounded theory using in-depth interviews with people over 18 years who are or have experienced kidney transplant failure, their families/close friends, and renal healthcare professional. Iterative purposive sampling of patients from different hospitals will be undertaken to achieve diversity with respect to age, sex, ethnicity, socioeconomic position, transplant type, and cause of transplant failure. Subsequent sampling will be theoretical, to test and develop hypotheses and theories being constructed. The sample size will be determined by reaching theoretical theme saturation with an anticipated minimum of 25–30 patients, 25–30 family members/close friends and 10–15 renal healthcare professionals. The research team will take a reflexive approach to make any influences or potential biases transparent. This knowledge will be used to develop the programme theory and design an RCT to evaluate treatments delivered at the right time in a patient’s journey, to improve experiences and outcomes for people with failing kidney transplants.

Background:Palliative care improves the health of children with a life-limiting condition and appears to draw implicitly on concepts shared with a model of health promotion. However, to date there has been no scrutiny about how this relationship may shape understanding about children's palliative care.Aim:To explore the influence of health promoting concepts on children's palliative care models, policies and guidelines.Data sources:Health and social care databases were searched for policies, models and guidelines published between 2000–2018. Additional searches of professional national and international healthcare websites, children's palliative care charities and UK and Ireland government websites were conducted.Methods:A best fit framework synthesis was used.Findings:A total of 55 policies and guidelines were reviewed for the framework synthesis. Eight themes were generated: (1) health promoting children's palliative care policy and guidelines; (2) planning ahead; (3) creating a supportive environment; (4) enabling coping and independence; (5) reorienting children's palliative care sectors; (6) the lengthening trajectory of need for support; (7) strengthening community engagement in children's palliative care; and (8) quality of life and value-based ideologies.Conclusion:The best fit framework synthesis confirmed a conceptual relationship between children's palliative care and health promotion. This is captured in a new model that will extend professionals' understanding.

A considerable proportion of quantitative research remains unpublished once completed. Little research has documented non-dissemination and dissemination bias in qualitative research. This study aimed to generate evidence on the extent of non-dissemination in qualitative research. We followed a cohort of qualitative studies presented as conference abstracts to ascertain their subsequent publication status. We searched for subsequent full publication in MEDLINE, in the Cumulative Index to Nursing & Allied Health Literature and in Google Scholar. We matched abstracts to subsequent publications according to authors, method of data collection and phenomenon of interest. Fisher's exact test was calculated to examine associations between study characteristics and publication. Factors potentially associated with time to publication were evaluated with Cox regression analysis. For 91 of 270 included abstracts (33.70%; 95% CI 28.09%-39.68%), no full publication was identified. Factors that were found to be associated with subsequent full publication were oral presentation (OR 4.62; 95% CI 2.43-8.94) and university affiliation (OR 1.96; 95% CI 1.05-3.66). Compared to oral presentations, studies presented as posters took longer time to reach full publication (hazard ratio 0.35, 95% CI 0.21-0.58). This study shows that it was not possible to retrieve a full publication for over one-third of abstracts. Our findings suggest that where this non-dissemination is systematic, it may lead to distortions of the qualitative evidence-base for decision-making through dissemination bias. Our findings are congruent with those of other studies. Further research might investigate non-dissemination of qualitative studies in other disciplines to consolidate our findings.

Too many people living with chronic kidney disease are opting for and starting on hospital-based dialysis compared to a home-based kidney replacement therapy. Dialysis services are becoming financially unsustainable.This study aimed to assess the efficacy of coproductive research in chronic kidney disease service improvement to achieve greater sustainability.A 2-year coproductive service improvement study was conducted with multiple stakeholders with the specific intention of maximizing engagement with the national health kidney services, patients and public.A national health kidney service (3 health boards, 18 dialysis units), patients and families (n = 50), multidisciplinary teams including doctors, nurses, psychologists, social workers, and so forth (n = 68), kidney charities, independent dialysis service providers and wider social services were part of this study.Coproductive research identified underutilized resources (e.g., patients on home dialysis and social services) and their potential, highlighted unmet social care needs for patients and families and informed service redesign. Education packages were reimagined to support the home dialysis agenda including opportunities for wider service input. The impacts of one size fits all approaches to dialysis on specialist workforce skills were made clearer and also professional, patient and public perceptions of key sustainability policies.Patient and key stakeholders mapped out new ways to link services to create more sustainable models of kidney health and social care. Maintaining principles of knowledge coproduction could help achieve financial sustainability and move towards more prudent adult chronic kidney disease services.Involved in developing research questions, study design, management and conduct, interpretation of evidence and dissemination.

Background Co-production of research into public health services has yet to demonstrate tangible benefits. Few studies have reported the impact of co-production on research outcomes. The previous studies of organ donation have identified challenges in engaging with public organizations responsible, gaining ethical approval for sensitive studies with the recently bereaved and difficulty in recruiting bereaved family members who were approached about organ donation. Objective To address these challenges, we designed the first large co-productive observational study to evaluate implementation of a new system of organ donation in Wales. This paper outlines the co-productive strategies that were designed to overcome known methodological challenges and reports what impact they had on resolving these challenges. Design Two-year co-produced study with multiple stakeholders with the specific intention of maximizing engagement with the National Health Service arm in Wales responsible for organ donation, and recruitment of bereaved family members whose perspectives are essential but commonly absent from studies. Setting and participants NHS Blood and Transplant, Welsh Government and multiple patient and public representatives who served as co-productive partners with the research team. Results Co-productive strategies enabled a smooth passage through four different ethics processes within the 10-week time frame, family member recruitment targets to be surpassed, sharing of routinely collected data on 100% of potential organ donor cases and development of further research capacity and capability in a critically under researched area. Discussion and conclusion Although expensive and time consuming, co-production was effective and added value to research processes and study outcomes.

The World Health Organization (WHO) commissioned systematic reviews to assist with the development of new emergency risk communication guidelines that will impact responses and distribution of resources at all levels. This mixed-method evidence synthesis, guided by Cochrane principles and methods, examined the extant research in countries throughout the world, published from 2003 to 2016, related to the best practices to engage communities in preparing for and responding to emergency events with public health implications. Although few studies directly examined which strategies or tactics effectively engage public participation, many studies reinforced the importance of community participation. The findings support the perspective that emergency events are communicatively understood by all publics and that they benefit from emergency risk communication before, during, and after such events, especially when grounded in local contexts. Although the importance of local context limits the generalizability of risk communication, it is important to continue studying strategies and tactics to cultivate participation among all stakeholders.

Background It is not known which attributes of care are valued the most by those who experience hospice services. Such knowledge is integral to service development as it facilitates opportunities for continuous improvement of hospice care provision. The objectives of this mixed-studies systematic review were to explore patients’ and their family carer views and experiences, to determine what they valued about adult hospice care in the UK. Methods ASSIA, PubMed, CINAHL and PsycINFO were searched from inception, up until March 2017 to identify qualitative, quantitative, and mixed-methods studies. Four additional searching techniques supplemented the main search and grey literature was included. A three-stage mixed-method systematic review was conducted with a sequential exploratory design. Thematic synthesis was used with qualitative data, followed by a narrative summary of the quantitative data. The qualitative and quantitative syntheses were then juxtaposed within a matrix to produce an overarching synthesis. Results Thirty-four studies highlighted that what patients and carers valued was generally context specific and stemmed from an amalgamation of hospice service components, which both individually and collectively contributed to improvements in quality of life. When the syntheses of qualitative and quantitative studies were viewed in isolation, the value placed on services remained relatively consistent, with some discrepancies evident in service availability. These were commonly associated with geographical variations, as well as differences in service models and timeframes. Through an overarching synthesis of the qualitative and quantitative evidence, however, notable variations and a more nuanced account of what people valued and why were more prominent, specifically in relation to a lack of social support for carers, disparate access to essential services, the underrepresentation of patients with a non-cancer diagnosis, and the dissatisfaction with the range of services provided. Conclusion Review findings strengthen the existing evidence base and illuminates the underpinning elements of hospice care most valued by patients and their families. With large disparities in the availability of services, however, the underrepresentation of patients with non-malignant diseases and the limited evidence base demonstrating the adequate addressment of the social needs of carers, there continues to be considerable gaps that warrants further research. Electronic supplementary material The online version of this article (10.1186/s12904-019-0401-1) contains supplementary material, which is available to authorized users.

In an attempt to improve organ donation rates, some countries are considering moving from “opt‐in” systems where citizens must express their willingness to be an organ donor, to “opt‐out” systems where consent is presumed unless individuals have expressed their wishes otherwise, by, for example, joining an “opt‐out” register. In Wales—a part of the United Kingdom—the devolved government recently legislated for an “opt‐out” system. For the change to be effective, a public awareness campaign was critical to the policy's success. Using quantitative and qualitative content analysis, we explored media coverage of the change to better understand the relationship between the state, policy actors, media and the public when such policy changes take place. Our findings illustrate how a state communication campaign can effectively set the media agenda within which we saw a degree of interdependency created with the state using the media to promote policy, and the media relying on the state for credible information. Yet we also found that the media is not uncritical and observed how it uses its autonomy to influence policy setting. Over the period of study, we found that a change in tone and view towards deemed consent organ donation has taken place in the media. However, while this may influence or reflect public attitudes, it is yet to be seen whether the media campaign translates into behavioural change that will result in increases in organ donations.

Communication during a public health emergency event is a complex process. The objective of the present systematic review was to examine the extant literature related to such events to answer the following question: What are the best ways to communicate uncertainties to public audiences, at-risk communities, and stakeholders? The search for literature was in multiple languages; it had a focus on English and included Arabic, Chinese, French, Russian, and Spanish. The search included published studies, grey literature, and media reports. The found literature was narrowed to select only data-based primary studies, which were classified into four methodological streams: Quantitative-comparison groups; Quantitative-descriptive survey; Qualitative; and Mixed-method and case study. Study characteristics extracted from individual studies of all methodological streams included study method, country focus, disaster/ emergency type, disaster/ emergency phase, and at-risk/ vulnerable population. Study findings for all methodological streams were extracted as narrative findings. The synthesis of findings was done in two stages. In the first stage, findings from individual studies were synthesized within methodological streams and then these within-method synthesized findings were evaluated for certainty/ confidence using appropriate tools. In the second stage, the within-method synthesized findings were synthesized across methodological streams to develop an overarching synthesis of findings. In both the within-method and across-method stages, the synthesis of findings included subgroup analyses related to type of emergency event, phase of emergency event, country of emergency event, and presence of vulnerable population. The last two subgroups allowed considerations of equity in the synthesized findings. For English language literature search, almost 2900 titles and abstracts were scanned, of which about 1700 full-texts were quickly read. After this, 73 full-texts were downloaded, of which 33 data-based primary studies were selected for data extraction. For Arabic, Chinese, French, Russian, and Spanish languages all together almost 8600 titles and abstracts were scanned, of which about 900 full-texts were downloaded, of which 16 were fully read and then 13 data-based primary studies were selected for data extraction. The results showed that country coverage was of mostly high and middle-income countries in Asia, Europe, North America, and Oceania. The event most covered was infectious disease; other relatively common events included flood and earthquake. The final set of across-method synthesized findings showed that uncertainty in public health emergency events is a multi-faceted concept with multiple components. There is general agreement among experts and researchers, though with some exceptions, that communication by authorities to the public should include explicit information about uncertainties associated with events. However, it is important to ensure that the information provided is consistent and not contradictory, and is presented clearly and in an easy to understand manner. The findings also showed that uncertainty related to public health emergency events requires a distinction between uncertainty experience and uncertainty information. It is likely that uncertainty is experienced and uncertainty information is understood and misunderstood in the same general ways by both the public and experts. The experience of uncertainty may be a defining feature of a public health emergency event not only for the public and experts, but for the media as well as it has to often deal with contradictory and inconsistent uncertain information.

The systematic review examined the phenomenon of trust during public health emergency events. The literature reviewed was field studies done with people directly affected or likely to be affected by such events and included quantitative, qualitative, mixed-method, and case study primary studies in English (N = 38) as well as Arabic, Chinese, French, Russian, and Spanish (all non-English N = 30). Studies were mostly from high- and middle-income countries, and the event most covered was infectious disease. Findings from individual studies were first synthesized within methods and evaluated for certainty/confidence, and then synthesized across methods. The final set of 11 findings synthesized across methods identified a set of activities for enhancing trust and showed that it is a multi-faceted and dynamic concept.

Background Despite home dialysis having many advantages, take-up by people with established renal failure is low in many countries. Previous studies highlight complex social, psychological, economic and health-system obstacles to patients choosing home dialysis. The study explored how people who are pre-dialysis, caregivers and health professionals together navigate common shared decision-making processes, and assesses how this impacts on choice of dialysis, conservative treatment or transplant. Methods This qualitative study took place in Wales, a country within the United Kingdom with a publicly-funded healthcare system. From 5 renal centres, education literature used in patient education was collected and content analysis applied. The theoretical framework was the MAGIC shared decision-model. From February 2019 until data saturation was reached in January 2020, semi-structured interviews with a purposive sample of 51 patients, 41 caregivers and 49 renal professionals were undertaken. Interview data were analysed using framework analysis. Patient and public representatives were involved throughout. Results Thematic findings are presented as: Prior knowledge, choice talk, options talk, decision talk. Gaps were found in both knowledge and understanding at every stage of the decision-making process and amongst all involved. Patients and caregivers came with varying levels of prior knowledge and understanding, which can result in misinformation and biases that contaminate the shared decision-making process. This is not always recognised by renal professionals. Presentation of treatment options through education programmes was often found to be inadequate, biased or poorly understood. Such deficiencies create partialities towards some treatments and, in particular, mitigate against the take-up of home therapies, even when they may be the most appropriate. A logic model and a road map to further evolving clinical practice was developed. Conclusions There are critical points in the process at where change could benefit patients. Patients need to be better prepared and their preconceived ideas and misconceptions gently challenged. Healthcare professionals need to update their knowledge in order to provide the best advice and guidance. Shared decision-making processes need to be individually-tailored so that there is more attention paid to the benefits of home based options, and on people who could chose a home therapy but select a different option.

Aim\ud\udTo report a protocol for a qualitative study to better understand the key factors that influence decision making about pregnancy from women's perspectives and to use these data to develop a theoretical model for shared decision-making tools for the multiple stakeholders.\udDesign\ud\udMixed-method design using online surveys (with validated components) and purposively sampled follow-up semi structured interviews.\udMethods\ud\udFunded from September 2020 for 12 months. Online surveys of adult women (aged 18–50) identified via all Wales kidney database (n ≥ 500), additional recruitment through multidisciplinary healthcare professionals, relevant third sector organizations and social media. Follow-up in-depth qualitative interviews with n = 30 women. Linear regression models to identify associations between shared decision-making preferences and clinical and psychosocial variables. Qualitative interviews will use a visual timeline task to empower women in taking control over their narratives. Qualitative data will be fully transcribed and analysed thematically, based around a chronological and theoretical (theoretical domains framework) structure that maps out key challenges and opportunities for improved decision support in the care pathway. Visual timelines will be used during stakeholder consultation activities, to enable us to co-create a map of current support, gaps in provision, and opportunities for interventions. Quantitative data will be analysed descriptively to characterize our cohort. We will assemble a multidisciplinary shared decision-making intervention development group and provide ongoing stakeholder consultation activities with patient and public representatives.\udDiscussion\ud\udOutcomes will support new learning into; the ways women's knowledge of kidney disease may affect family planning and pregnancy, their needs in terms of psychological and social support, and how they weigh up the pros and cons of starting a family.\udImpact\ud\udEvidence will inform the design of new shared decision-making tools to better support women with the complex and often emotional decisions about having children while living with kidney disease.

Background The number of young adults with complex health-care needs due to life-limiting conditions/complex physical disability has risen significantly over the last 15 years, as more children now survive into adulthood. The transition from children to adult services may disrupt provision of essential respite/short break care for this vulnerable population, but the impact on young adults, families and providers is unclear. Aim To review the evidence on respite care provision for young adults (aged 18–40 years) with complex health-care needs, provide an evidence gap analysis and develop a conceptual framework for respite care. Design A two-stage mixed-methods systematic review, including a knowledge map of respite care and an evidence review of policy, effectiveness, cost-effectiveness and experience. Data sources Electronic databases and grey/unpublished literature were searched from 2002 to September 2019. The databases searched included Cumulative Index to Nursing and Allied Health Literature, MEDLINE, EMBASE, PsycINFO, Applied Social Sciences Index and Abstracts, Health Management Information Consortium, PROSPERO, Turning Research into Practice, COnNECT+, British Nursing Index, Web of Science, Social Care Online, the National Institute for Health Research Journals Library, Cochrane Effective Practice and Organisation of Care specialist register, databases on The Cochrane Library and international clinical trials registers. Additional sources were searched using the CLUSTER (Citations, Lead authors, Unpublished materials, Scholar search, Theories, Early examples, Related projects) approach and an international ‘call for evidence’. Methods and analysis Multiple independent reviewers used the SPICE (Setting, Perspective, Intervention/phenomenon of interest, Comparison, Evaluation) framework to select and extract evidence for each stage, verified by a third reviewer. Study/source characteristics and outcomes were extracted. Study quality was assessed using relevant tools. Qualitative evidence was synthesised using a framework approach and UK policy was synthesised using documentary content analysis. GRADE-CERQual (Grading of Recommendations Assessment, Development and Evaluation-Confidence in the Evidence from Reviews of Qualitative Research) was used to assess confidence in the evidence. Logic models developed for each type of respite care constituted the conceptual framework. Results We identified 69 sources (78 records) from 126,267 records. The knowledge map comprised the following types of respite care: residential, home based, day care, community, leisure/social provision, funded holidays and emergency. Seven policy intentions included early transition planning and prioritising respite care according to need. No evidence was found on effectiveness and cost-effectiveness. Qualitative evidence focused largely on residential respite care. Facilitators of accessible/acceptable services included trusted and valued relationships, independence and empowerment of young adults, peer social interaction, developmental/age-appropriate services and high standards of care. Barriers included transition to adult services, paperwork, referral/provision delay and travelling distance. Young adults from black, Asian and minority ethnic populations were under-represented. Poor transition, such as loss of or inappropriate services, was contrary to statutory expectations. Potential harms included stress and anxiety related to safe care, frustration and distress arising from unmet needs, parental exhaustion, and a lack of opportunities to socialise and develop independence. Limitations No quantitative or mixed-methods evidence was found on effectiveness or cost-effectiveness of respite care. There was limited evidence on planned and emergency respite care except residential. Conclusions Policy intentions are more comprehensively met for young people aged Future work Research to quantify the effectiveness and cost-effectiveness of respite care to support service development and commissioning. Development of a core set of outcomes measures to support future collation of evidence. Study registration This study is registered as PROSPERO CRD42018088780. Funding This project was funded by the National Institute for Health Research (NIHR) Health Services and Delivery Research programme and will be published in full in Health Services and Delivery Research; Vol. 9, No. 6. See the NIHR Journals Library website for further project information.

One-fifth of all disabled children have mobility limitations. Early provision of powered mobility for very young children (aged 5 years) is hypothesised to trigger positive developmental changes. However, the optimum age at which to introduce powered mobility is unknown.The aim of this project was to synthesise existing evidence regarding the effectiveness and cost-effectiveness of powered mobility for very young children, compared with the more common practice of powered mobility provision from the age of 5 years.The study was planned as a mixed-methods evidence synthesis and economic modelling study. First, evidence relating to the effectiveness, cost-effectiveness, acceptability, feasibility and anticipated outcomes of paediatric powered mobility interventions was reviewed. A convergent mixed-methods evidence synthesis was undertaken using framework synthesis, and a separate qualitative evidence synthesis was undertaken using thematic synthesis. The two syntheses were subsequently compared and contrasted to develop a logic model for evaluating the outcomes of powered mobility interventions for children. Because there were insufficient published data, it was not possible to develop a robust economic model. Instead, a budget impact analysis was conducted to estimate the cost of increased powered mobility provision for very young children, using cost data from publicly available sources.A range of bibliographic databases [Cumulative Index to Nursing and Allied Health Literature (CINHAL), MEDLINE, EMBASE™ (Elsevier, Amsterdam, the Netherlands), Physiotherapy Evidence Database (PEDro), Occupational Therapy Systematic Evaluation of Evidence (OTseeker), Applied Social Sciences Index and Abstracts (ASSIA), PsycINFO, Science Citation Index (SCI; Clarivate Analytics, Philadelphia, PA, USA), Social Sciences Citation Index™ (SSCI; Clarivate Analytics), Conference Proceedings Citation Index - Science (CPCI-S; Clarivate Analytics), Conference Proceedings Citation Index - Social ScienceHumanities (CPCI-SSH; Clarivate Analytics), Cochrane Central Register of Controlled Trials (CENTRAL), Cochrane Database of Systematic Reviews, Database of Abstracts of Reviews of Effects (DARE), NHS Economic Evaluation Database (NHS EED), Health Technology Assessment (HTA) Database and OpenGrey] was systematically searched and the included studies were quality appraised. Searches were carried out in June 2018 and updated in October 2019. The date ranges searched covered from 1946 to September 2019.In total, 89 studies were included in the review. Only two randomised controlled trials were identified. The overall quality of the evidence was low. No conclusive evidence was found about the effectiveness or cost-effectiveness of powered mobility in children aged either 5 or ≥ 5 years. However, strong support was found that powered mobility interventions have a positive impact on children's movement and mobility, and moderate support was found for the impact on children's participation, play and social interactions and on the safety outcome of accidents and pain. 'Fit' between the child, the equipment and the environment was found to be important, as were the outcomes related to a child's independence, freedom and self-expression. The evidence supported two distinct conceptualisations of the primary powered mobility outcome, movement and mobility: the former is 'movement for movement's sake' and the latter destination-focused mobility. Powered mobility should be focused on 'movement for movement's sake' in the first instance. From the budget impact analysis, it was estimated that, annually, the NHS spends £1.89M on the provision of powered mobility for very young children, which is 2% of total wheelchair service expenditure.The original research question could not be answered because there was a lack of appropriately powered published research.Early powered mobility is likely to have multiple benefits for very young children, despite the lack of robust evidence to demonstrate this. Age is not the key factor; instead, the focus should be on providing developmentally appropriate interventions and focusing on 'movement for movement's sake'.Future research should focus on developing, implementing, evaluating and comparing different approaches to early powered mobility.This study is registered as PROSPERO CRD42018096449.This project was funded by the National Institute for Health Research (NIHR) Health Technology programme and will be published in full inThe aim of this study was to find out the benefits and costs of providing very young children, aged 5 years, with powered mobility devices. Examples of powered mobility devices are electrically powered wheelchairs and modified ride-on toys. We looked at many research papers about children and powered mobility. We found many benefits of powered mobility. We then combined all of the information to see if using powered mobility before the age of 5 years had any specific benefits for children. The evidence tells us that powered mobility has a positive effect on children’s movement, and it can boost children’s social interactions with other people, and their independence. Children using powered mobility were able to go to their friends by themselves, move around a play space as they wanted and take part in physical activities and games. We found that the fit between the child, the powered mobility device and the child’s everyday environment was important. When the fit was not good, children experienced a lot of problems. Some children and families felt that powered mobility did not suit their needs, leading to children using a manual wheelchair instead and thereby missing out on education, social opportunities and play. Barriers to powered mobility were found in the physical environment (e.g. inaccessible buildings) and the social environment (e.g. adults supervising children too closely) and often affected children’s independence. We found that the advantages and disadvantages of powered mobility were similar in younger and older children, even though the activities they took part in were different. We also found that each year the NHS spends 2% of its wheelchair service budget on powered mobility for very young children. In conclusion, powered mobility can benefit very young children, but it requires a good fit with the child’s environment.

ObjectivesTo identify the shared research priorities of patients, caregivers and multidisciplinary renal health and social care professionals across Wales for integrated renal health and social care in Wales.DesignResearch priority setting exercise adapted from the James Lind Alliance national priority setting partnership framework in UK healthcare.SettingTwo workshops: one in North Wales with patients, caregivers and multidisciplinary renal health and social care professionals and one in South Wales with the Welsh Renal Clinical Network (commissioners of renal services in Wales). Additional input provided from stakeholders via email correspondence and face to face communications.ParticipantsAcademics n=14, patients n=16, family/carers n=6, multidisciplinary renal healthcare professionals n=40, local authority councils n=3, renal charities n=6 wider third sector organisations n=8, renal industries n=4, Welsh government social care n=3, renal service commissioners n=8.Results38 research priority questions grouped into 10 themes were agreed. The themes included: (1) integrating health and social care, (2) education, (3) acute kidney injury, (4) chronic kidney disease and cardiovascular disease, (5) transplantation, (6) dialysis, (7) personalised medicines, (8) cross-cutting priorities, (9) specific social contexts and (10) transitional services and children. Research questions were broad and covered a range of health and social care topics. Patient and professional perspectives broadly overlapped. Research priority setting activities revealed gaps in knowledge in overall service provision and potential areas for service improvement.ConclusionsMapping priorities in health services and social care highlighted the research needed to support renal health services delivery and commissioning in Wales.

ObjectiveTo estimate the effectiveness of standardised self-management kits for children with type 1 diabetes.DesignPragmatic trial with randomisation ratio of two intervention: one control. Qualitative process evaluation.Setting11 diabetes clinics in England and Wales.ParticipantsBetween February 2010 and August 2011, we validly randomised 308 children aged 6–18 years; 201 received the intervention.InterventionWe designed kits to empower children to achieve glycaemic control, notably by recording blood glucose and titrating insulin. The comparator was usual treatment.Outcome measures at 3 and 6 monthsPrimary: Diabetes Pediatric Quality of Life Inventory (PedsQL). Secondary: HbA1c; General PedsQL; EQ-5D; healthcare resource use.ResultsOf the five Diabetes PedsQL dimensions, Worry showed adjusted scores significantly favouring self-management kits at 3 months (mean child-reported difference =+5.87; Standard error[SE]=2.19; 95% confidence interval [CI]) from +1.57 to +10.18; p=0.008); but Treatment Adherence significantly favoured controls at 6 months (mean child-reported difference=−4.68; SE=1.74; 95%CI from −8.10 to −1.25; p=0.008). Intervention children reported significantly worse changes between 3 and 6 months on four of the five Diabetes PedsQL dimensions and on the total score (mean difference=−3.20; SE=1.33; 95% CI from −5.73 to −0.67; p=0.020). There was no evidence of change in HbA1c; only 18% of participants in each group achieved recommended levels at 6 months. No serious adverse reactions attributable to the intervention or its absence were reported.Use of kits was poor. Few children or parents associated blood glucose readings with better glycaemic control. The kits, costing £185, alienated many children and parents.ConclusionsStandardised kits showed no evidence of benefit, inhibited diabetes self-management and increased worry. Future research should study relationships between children and professionals, and seek new methods of helping children and parents to manage diabetes.Trial registration numberNCT17551624.

To explain the differences in organ donation consent outcomes of a new nursing role (Specialist Requesters) derived from the United States (US) compared with the existing nursing role (Specialist Nurses in Organ Donation).Thirty-month observational qualitative process evaluation: Implementation theory-informed analysis.Qualitative content analysis of free text describing challenges, processes and practice from 996 bespoke routinely collected potential organ donor 'approach forms' from two regions: one where there was no difference, and one with an observed difference in consent outcomes.Region A consent rate: Specialist Requester 75.8%, Specialist Nurse in Organ Donation71.8%. Region B consent rate: Specialist Requester 71.4%, Specialist Nurse in Organ Donation 82%. Region A Specialist Requesters turned the family position from no or uncertain to support organ donation in 73% of cases, compared with 27.4% in Region B. Two Specialist Requesters in Region A were highly effective. Region B experienced problems with intervention fidelity and implementation.The benefits of the Specialist Requester role remain unclear. Positive differences in consent rates achieved by Specialist Requesters in the originator region reduced over time and have yet to be successfully replicated in other regions.The impact of Specialist Requesters on consent outcomes varied across regions and it was not known why. Specialist Requesters in Region A were better at getting family member(s) to support organ donation. In Region B, Specialist Nurse in Organ Donation consent rates were higher and problems with intervention fidelity were identified (recruitment, staffing, less experience). Policy makers need to understand it is not just a matter of waiting for the Specialist Requester intervention to work. Ongoing training and recruiting the right people with the right skills need to be addressed and consistently reviewed.目的: 说明美国新型护理职位(专寻家)与现存护理职位(器官捐献专业护士)在获取器官捐赠许可成效方面的不同点。 设计: 进行定性观测并对流程进行评估:采用理论依据分析法 方法: 定期搜集两个不同区域内与潜在器官捐赠者“建立联系的方式”,从中获取描述挑战、流程及实施方法的自由文本,并对其进行定性内容分析:一区域的捐赠许可成效并无不同;而另一区域大有不同。 结果: 区域A许可率:专寻家为75.8%,器官捐献专业护士为71.8%。 区域B许可率:专寻家为71.4%,器官捐献专业护士为82%。 区域A中的专寻家在73%项案例中将家庭状况项勾选内容由“否”更为“不确定”,从而支持器官捐赠,而区域B中,这一数字是27.4%。结果是,区域A中的两名专寻家工作效率极高;而区域B中的则有维持干预保真度及实施方面的问题。 结论: 专寻家一职所带来的效益仍未知。发起人地区的专寻家给许可率方面带来的增长日渐减少,但其他区域尚未有此迹象。 影响: 专寻家对捐赠许可成效的影响视区域而有不同,其原因未知。在区域A,专寻家更擅长让家庭成员支持器官捐献。而在区域B,专业护士达成了更高器官捐献许可率,并且干预保真度方面的问题(职工招聘及安置不当、工作经验不足)也得到了鉴定。政策制定者们需要知道的是,器官捐献并不只意味着等着专寻家调停成功就足够了。现在需要长期提供训练项目,招收对口的技术型职员,并统一进行审查。.

Objectives: This article provides reviewers with guidance on methods for identifying and processing evidence to understand intervention implementation. Study Design and Setting: Strategies, tools, and methods are applied to the systematic review process to illustrate how process and implementation can be addressed using quantitative, qualitative, and other sources of evidence (i.e., descriptive textual and nonempirical). Results: Reviewers can take steps to navigate the heterogeneity and level of uncertainty present in the concepts, measures, and methods used to assess implementation. Activities can be undertaken in advance of a Cochrane quantitative review to develop program theory and logic models that situate implementation in the causal chain. Four search strategies are offered to retrieve process and implementation evidence. Recommendations are made for addressing rigor or risk of bias in process evaluation or implementation evidence. Strategies are recommended for locating and extracting data from primary studies. The basic logic is presented to assist reviewers to make initial review-level judgments about implementation failure and theory failure. Conclusion: Although strategies, tools, and methods can assist reviewers to address process and implementation using quantitative, qualitative, and other forms of evidence, few exemplar reviews exist. There is a need for further methodological development and trialing of proposed approaches. Refereed/Peer-reviewed

The Cochrane Qualitative and Implementation Methods Group develops and publishes guidance on the synthesis of qualitative and mixed-method evidence from process evaluations. Despite a proliferation of methods for the synthesis of qualitative research, less attention has focused on how to integrate these syntheses within intervention effectiveness reviews. In this article, we report updated guidance from the group on approaches, methods, and tools, which can be used to integrate the findings from quantitative studies evaluating intervention effectiveness with those from qualitative studies and process evaluations. We draw on conceptual analyses of mixed methods systematic review designs and the range of methods and tools that have been used in published reviews that have successfully integrated different types of evidence. We outline five key methods and tools as devices for integration which vary in terms of the levels at which integration takes place; the specialist skills and expertise required within the review team; and their appropriateness in the context of limited evidence. In situations where the requirement is the integration of qualitative and process evidence within intervention effectiveness reviews, we recommend the use of a sequential approach. Here, evidence from each tradition is synthesized separately using methods consistent with each tradition before integration takes place using a common framework. Reviews which integrate qualitative and process evaluation evidence alongside quantitative evidence on intervention effectiveness in a systematic way are rare. This guidance aims to support review teams to achieve integration and we encourage further development through reflection and formal testing. Refereed/Peer-reviewed

A rapid review of gray literature from 2015 to 2016 was conducted to identify the lessons learned for emergency risk communication from recent outbreaks of Ebola, Zika, and yellow fever. Gray literature databases and key websites were searched and requests for documents were posted to expert networks. A total of 83 documents met inclusion criteria, 68 of which are cited in this report. This article focuses on the 3 questions, out of 12 posed by World Health Organization as part of a Guideline development process, dealing most directly with communicating risk during health emergencies: community engagement, trust building, and social media. Documents were evaluated for credibility using an Authority, Accuracy, Coverage, Objectivity, Date, Significance (AACODS) checklist? and if the document contained a study, a method-specific tool was applied. A rapid content analysis of included sources was undertaken with relevant text either extracted verbatim or summarized and mapped against the questions. A database subset was created for each question and citations were assigned to the subset(s) for which they contained relevant information. Multiple designations per document were common. Database subsets were used to synthesize the results into a coherent narrative. The gray literature strongly underlines the central importance of local communities. A one-size-fits-all approach does not work. For maximum effectiveness, local communities need to be involved with and own emergency risk communication processes, preferably well before an emergency occurs. Social media can open new avenues for communication, but is not a general panacea and should not be viewed as a replacement for traditional modes of communication. In general, the gray literature indicates movement toward greater recognition of emergency risk communication as a vitally important element of public health.

ObjectivesTo explore how people with chronic kidney disease who are pre-dialysis, family members and healthcare professionals together navigate common shared decision-making processes and to assess how this impacts future treatment choice.DesignCoproductive qualitative study, underpinned by the Making Good Decisions in Collaboration shared decision-model. Semistructured interviews with a purposive sample from February 2019 - January 2020. Interview data were analysed using framework analysis. Coproduction of logic models/roadmaps and recommendations.SettingFive Welsh kidney services.Participants95 participants (37 patients, 19 family members and 39 professionals); 44 people supported coproduction (18 patients, 8 family members and 18 professionals).FindingsShared decision-making was too generic and clinically focused and had little impact on people getting onto home dialysis. Preferences of where, when and how to implement shared decision-making varied widely. Apathy experienced by patients, caused by lack of symptoms, denial, social circumstances and health systems issues made future treatment discussions difficult. Families had unmet and unrecognised needs, which significantly influenced patient decisions. Protocols containing treatment hierarchies and standards were understood by professionals but not translated for patients and families. Variation in dialysis treatment was discussed to match individual lifestyles. Patients and professionals were, however, defaulting to the perceived simplest option. It was easy for patients to opt for hospital-based treatments by listing important but easily modifiable factors.ConclusionsShared decision-making processes need to be individually tailored with more attention on patients who could choose a home therapy but select a different option. There are critical points in the decision-making process where changes could benefit patients. Patients need to be better educated and their preconceived ideas and misconceptions gently challenged. Healthcare professionals need to update their knowledge in order to provide the best advice and guidance. There needs to be more awareness of the costs and benefits of the various treatment options when making decisions.

This mixed-method evidence synthesis drew on Cochrane methods and principles to systematically review literature published between 2003 and 2016 on the best social media practices to promote health protection and dispel misinformation during disasters. Seventy-nine studies employing quantitative, qualitative, and mixed methods on risk communication during disasters in all UN-languages were reviewed, finding that agencies need to contextualize the use of social media for particular populations and crises. Social media are tools that still have not become routine practices in many governmental agencies regarding public health in the countries studied. Social media, especially Twitter and Facebook (and equivalents in countries such as China), need to be incorporated into daily operations of governmental agencies and implementing partners to build familiarity with them before health-related crises happen. This was especially observed in U.S. agencies, local government, and first responders but also for city governments and school administrations in Europe. For those that do use social media during health-related risk communication, studies find that public relations officers, governmental agencies, and the general public have used social media successfully to spread truthful information and to verify information to dispel rumors during disasters. Few studies focused on the recovery and preparation phases and on countries in the Southern hemisphere, except for Australia. The vast majority of studies did not analyze the demographics of social media users beyond their geographic location, their status of being inside/outside the disaster zone; and their frequency and content of posting. Socioeconomic demographics were not collected and/or analyzed to drill deeper into the implications of using social media to reach vulnerable populations. Who exactly is reached via social media campaigns and who needs to be reached with other means has remained an understudied area.

Although disaster preparedness training is regularly conducted for a range of health-related professions, little evidence-based guidance is available about how best to actually develop capacity in staff for conducting emergency risk communication. This article presents results of a systematic review undertaken to inform the development of World Health Organization guidelines for risk communication during public health and humanitarian emergencies. A total of 6,720 articles were screened, with 24 articles identified for final analysis. The majority of research studies identified were conducted in the United States, were either disaster general or focused on infectious disease outbreak, involved in-service training, and used uncontrolled quantitative or mixed method research designs. Synthesized findings suggest that risk communication training should include a focus on collaboration across agencies, training in working with media, and emphasis on designing messages for specific audience needs. However, certainty of findings was at best moderate due to lack of methodological rigor in most studies.

IntroductionThe number of young adults with complex healthcare needs due to life-limiting conditions/complex physical disability has risen significantly as children with complex conditions survive into adulthood. Respite care and short breaks are an essential service, however, needs often go unmet after the transition to adult services, leading to a significant impact on the life expectancy and quality of life for this population. We aim to identify, appraise and synthesise relevant evidence to explore respite care and short breaks provision for this population, and to develop a conceptual framework for understanding service models.Methods and analysisA mixed-methods systematic review conducted in two stages: (1) knowledge map and (2) evidence review. We will comprehensively search multiple electronic databases; use the Citations, Lead authors, Unpublished materials, Google Scholar, Theories, Early examples, and Related projects (CLUSTER) approach, search relevant websites and circulate a ‘call for evidence’. Using the setting, perspective, intervention/phenomenon of interest, comparison and evaluation framework, two reviewers will independently select evidence for inclusion into a knowledge map and subsequent evidence review, extract data relating to study and population characteristics, methods and outcomes; and assess the quality of evidence. A third reviewer will arbitrate where necessary.Evidence will be synthesised using the following approaches: quantitative (narratively/conducting meta-analyses where appropriate); qualitative (framework approach); policy and guidelines (documentary analysis informed approach). An overall, integrated synthesis will be created using a modified framework approach. We will use Grading of Recommendations Assessment, Development and Evaluation (GRADE)/GRADE-Confidence in the Evidence from Reviews of Qualitative Research to assess the strength and confidence of the synthesised evidence. Throughout, we will develop a conceptual framework to articulate how service models work in relation to context and setting.Ethics and disseminationEthical approval is not required as this is a systematic review. We will present our work in academic journals, at appropriate conferences; we will disseminate findings across networks using a range of media. Steering and advisory groups were established to ensure findings are shared widely and in accessible formats.PROSPERO registration numberCRD42018088780.

This is a protocol for a Cochrane Review (Qualitative). The objectives are as follows: The overall objective of this QES is to explore and explain probable gender differences in the health literacy of migrants. Exploring possible gender differences in the context of migration will supplement the linked effectiveness review by providing a comprehensive understanding of the role that any gender differences may play in the development, delivery, and ultimately, the effectiveness of interventions for improving the health literacy of female and male migrants. This QES has the following specific objectives. To explore whether gender differences in the health literacy of migrants exist. To identify factors that may underlie gender differences in the four steps of health information processing (access, understand, appraise and apply). To explore and explain gender differences potentially found ‐ or not found ‐ in the effectiveness of health literacy interventions assessed by the linked effectiveness review. To explain ‐ in a third synthesis ‐ to what extent gender and migration‐specific factors may play a role in the development and delivery of health literacy interventions.

ObjectivesTo determine the short-term impact of a soft opt-out organ donation system on consent rates and donor numbers.DesignBefore and after observational study using bespoke routinely collected data.SettingNational Health Service Blood and Transplant.Participants205 potential organ donor cases in Wales.InterventionsThe Act and implementation strategy.Primary and secondary outcomesConsent rates at 18 months post implementation compared with 3 previous years, and organ donor numbers 21 months before and after implementation. Changes in organ donor register activity post implementation for 18 months.ResultsThe consent rate for all modes of consent was 61.0% (125/205), showing a recovery from the dip to 45.8% in 2014/2015. 22.4% (46/205) were deemed consented donors: consent rate 60.8% (28/46). Compared with the 3 years before the switch there was a significant difference in Welsh consent rates (χ2 p value=0.009). Over the same time period, rest of the UK consent rates also significantly increased from 58.6% (5256/8969) to 63.1% (2913/4614) (χ2 p valueConclusionThis is the first rigorous initial evaluation with bespoke data collected on all cases. The longer-term impact on consent rates and donor numbers is unclear. Concerns about a potential backlash and mass opting out were not realised. The move to a soft opt-out system has not resulted in a step change in organ donation behaviour, but can be seen as the first step of a longer journey. Policymakers should not assume that soft opt-out systems by themselves simply need more time to have a meaningful effect. Ongoing interventions to further enhance implementation and the public’s understanding of organ donation are needed to reach the 2020 target of 80% consent rates. Further longitudinal monitoring is required.

Background Decision making in health and social care requires robust syntheses of both quantitative and qualitative evidence. Meta-ethnography is a seven-phase methodology for synthesising qualitative studies. Developed in 1988 by sociologists in education Noblit and Hare, meta-ethnography has evolved since its inception; it is now widely used in healthcare research and is gaining popularity in education research. The aim of this article is to provide up-to-date, in-depth guidance on conducting the complex analytic synthesis phases 4 to 6 of meta-ethnography through analysis of the latest methodological evidence. Methods We report findings from a methodological systematic review conducted from 2015 to 2016. Fourteen databases and five other online resources were searched. Expansive searches were also conducted resulting in inclusion of 57 publications on meta-ethnography conduct and reporting from a range of academic disciplines published from 1988 to 2016. Results Current guidance on applying meta-ethnography originates from a small group of researchers using the methodology in a health context. We identified that researchers have operationalised the analysis and synthesis methods of meta-ethnography – determining how studies are related (phase 4), translating studies into one another (phase 5), synthesising translations (phase 6) and line of argument synthesis - to suit their own syntheses resulting in variation in methods and their application. Empirical research is required to compare the impact of different methods of translation and synthesis. Some methods are potentially better at preserving links with the context and meaning of primary studies, a key principle of meta-ethnography. A meta-ethnography can and should include reciprocal and refutational translation and line of argument synthesis, rather than only one of these, to maximise the impact of its outputs. Conclusion The current work is the first to articulate and differentiate the methodological variations and their application for different purposes and represents a significant advance in the understanding of the methodological application of meta-ethnography. Electronic supplementary material The online version of this article (10.1186/s12874-019-0670-7) contains supplementary material, which is available to authorized users.

This paper is one of a series exploring the implications of complexity for systematic reviews and guideline development, commissioned by the WHO. The paper specifically explores the role of qualitative evidence synthesis. Qualitative evidence synthesis is the broad term for the group of methods used to undertake systematic reviews of qualitative research evidence. As an approach, qualitative evidence synthesis is increasingly recognised as having a key role to play in addressing questions relating to intervention or system complexity, and guideline development processes. This is due to the unique role qualitative research can play in establishing the relative importance of outcomes, the acceptability, fidelity and reach of interventions, their feasibility in different settings and potential consequences on equity across populations. This paper outlines the purpose of qualitative evidence synthesis, provides detail of how qualitative evidence syntheses can help establish understanding and explanation of the complexity that can occur in relation to both interventions and systems, and how qualitative evidence syntheses can contribute to evidence to decision frameworks. It provides guidance for the choice of qualitative evidence synthesis methods in the context of guideline development for complex interventions, giving ‘real life’ examples of where this has occurred. Information to support decision-making around choice qualitative evidence synthesis methods in the context of guideline development is provided. Approaches for reporting qualitative evidence syntheses are discussed alongside mechanisms for assessing confidence in the findings of a review.

Guideline developers are increasingly dealing with more difficult decisions concerning whether to recommend complex interventions in complex and highly variable health systems. There is greater recognition that both quantitative and qualitative evidence can be combined in a mixed-method synthesis and that this can be helpful in understanding how complexity impacts on interventions in specific contexts. This paper aims to clarify the different purposes, review designs, questions, synthesis methods and opportunities to combine quantitative and qualitative evidence to explore the complexity of complex interventions and health systems. Three case studies of guidelines developed by WHO, which incorporated quantitative and qualitative evidence, are used to illustrate possible uses of mixed-method reviews and evidence. Additional examples of methods that can be used or may have potential for use in a guideline process are outlined. Consideration is given to the opportunities for potential integration of quantitative and qualitative evidence at different stages of the review and guideline process. Encouragement is given to guideline commissioners and developers and review authors to consider including quantitative and qualitative evidence. Recommendations are made concerning the future development of methods to better address questions in systematic reviews and guidelines that adopt a complexity perspective.