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Despite research investment and a growing body of diverse evidence there has been no comprehensive review and grading of evidence for public health emergency preparedness and response practices comparable to those in medicine and other public health fields. The National Academies of Sciences, Engineering, and Medicine convened an ad hoc committee to develop and use methods for grading and synthesizing diverse types of evidence to create a single certainty of intervention-related evidence to support recommendations for Public Health Emergency Preparedness and Response Research. A 13-step consensus building method was used. Experts were first canvassed in public meetings, and a comprehensive review of existing methods was undertaken. Although aspects of existing review methodologies and evidence grading systems were relevant, none adequately covered all requirements for this specific context. Starting with a desire to synthesize diverse sources of evidence not usually included in systematic reviews and using GRADE for assessing certainty and confidence in quantitative and qualitative evidence as the foundation, we developed a mixed-methods synthesis review and grading methodology that drew on (and in some cases adapted) those elements of existing frameworks and methods that were most applicable. Four topics were selected as test cases. The process was operationalized with a suite of method-specific reviews of diverse evidence types for each topic. Further consensus building was undertaken through stakeholder engagement and feedback The NASEM committee's GRADE adaption for mixed-methods reviews will further evolve over time and has yet to be endorsed by the GRADE working group.

A considerable proportion of quantitative research remains unpublished once completed.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.

Care-experienced children and young people are at increased risk of poor mental health and well-being, and suicide-related outcomes. There is an evidence-base for intervention effectiveness, but this is primarily from the USA. The present systematic review synthesised evidence for international interventions, exploring potential transportability and adaptability to the UK. We constructed an evidence map, and syntheses of intervention effectiveness, process evaluations and economic evaluations. We conducted seven stakeholder consultations with care-experienced young people, carers and professionals, to appraise transportability and adaptability. We identified sixty-four interventions, with 124 associated study reports. Seventy-seven were from the USA. There was limited effectiveness in targeting mental health, although there were promising approaches. Few approaches targeted well-being and suicide. Context factors, identified by the review and confirmed by stakeholders, may inhibit delivery: insufficient resources; time, emotional and cognitive burden; challenging interprofessional relationships; non-responsiveness to young people's needs; and discounting of carers' knowledge. Stakeholders recommended peer mentoring by other care-experienced individuals and system-change models that facilitate an attachment and/or trauma-informed ethos. Adaptation of existing approaches may be required to account for the context factors. Further intervention work is needed to target well-being and suicide. [ABSTRACT FROM AUTHOR]

The mental health and wellbeing of children and young people who have been in care, primarily foster care, kinship care or residential care, remains a public health priority. The Care-experienced cHildren and young people's Interventions to improve Mental health and wEll-being outcomes Systematic review (CHIMES) synthesized evidence for the effectiveness of interventions targeting: subjective wellbeing; mental, behavioral and neurodevelopmental disorders; and suicide-related outcomes. Searches were conducted in 16 bibliographic databases and 22 websites between 1990 and 2022. This was supplemented by citation tracking, screening of relevant systematic reviews, and expert recommendation. We identified 35 interventions, with 44 evaluations via randomized controlled trials. Through meta-analyses, we found that interventions have a small beneficial impact on a variety of mental health outcomes in the short term (0–6 months). Interventions improved total social, emotional, and behavioral problems (d = −0.15, 95% CI [−0.28, −0.02]), social-emotional functioning difficulties (d = −0.18, 95% CI [−0.31, −0.05]), externalizing problem behaviors (d = −0.30, 95% CI [−0.53, −0.08]), internalizing problem behaviors (d = −0.35, 95% CI [−0.61, −0.08]); and depression and anxiety (d = −0.26, 95% CI [−0.40, −0.13]). Interventions did not demonstrate any effectiveness for outcomes assessed in the longer term (>6 months). Certainty of effectiveness was limited by risk of bias and imprecision. There was limited available evidence for interventions targeting subjective wellbeing and suicide-related outcomes. Future intervention design and delivery must ensure that programs are sufficient to activate causal mechanisms and facilitate change. Evaluation research should use a robust methodology. PROSPERO Registration: CRD42020177478 [ABSTRACT FROM AUTHOR]

Background: In May 2020, England implemented soft 'opt-out' or 'deemed consent' for deceased donation with the intention of raising consent rates. However, this coincided with the COVID-19 pandemic, making it difficult to assess the early impact of the law change. Wales and Scotland changed their organ donation legislation to implement soft opt-out systems in 2015 and 2021 respectively. This study provides a descriptive analysis of changes in consent and transplant rates for deceased organ donation in England, Scotland and Wales. Methods: Logistic regression and descriptive trend analysis were employed to assess the probability of a patient who died in critical care becoming a donor, and to report consent rates using data, respectively, from the Intensive Care National Audit and Research Centre (ICNARC) in England from 1 April 2014 to 30 September 2021, and from the Potential Donor Audit for England, Scotland and Wales from April 2010 to June 2023. Results: The number of eligible donors in April-June 2020 were 56.5%, 59.3% and 57.6% lower in England, Scotland and Wales relative to April-June 2019 (pre-pandemic). By April-June 2023, the number of eligible donors had recovered to 87.4%, 64.2% and 110.3%, respectively, of their levels in 2019. The consent rate in England, Scotland and Wales reduced from 68.3%, 63.0% and 63.6% in April-June 2019 to 63.2%, 60.5% and 56.3% in April-June 2023. Conclusions: While the UK organ donation system shows signs of recovery from the COVID-19 pandemic, the number of eligible potential donors and consent rates remain below their pre-pandemic levels. [ABSTRACT FROM AUTHOR]

England switched to an opt-out system of consent in 2020 aiming to increase the number of organs available. Spain also operates an opt-out system yet has almost twice the organ donations per million population compared with England. We aimed to identify both differences and similarities in the consent policies, documents and procedures in deceased donation between the two countries using comparative qualitative content and discourse analysis. Spain had simpler, locally tailored documents, the time taken for families to review and process information may be shorter, there were more pathways leading to organ donation in Spain, and more robust legal protections for the decisions individuals made in life. The language in the Spanish documents was one of support and reassurance. Documents in England by comparison appeared confusing, since additions were designed to protect the NHS against risk and made to previous document versions to reflect the law change rather than being entirely recast. If England's ambition is to achieve consent rates similar to Spain this analysis has highlighted opportunities that could strengthen the English system-by giving individuals' decisions recorded on the organ donor register legal weight, alongside unifying and simplifying consent policies and procedures to support families and healthcare professionals. [ABSTRACT FROM AUTHOR]

Background: Keeping the health workforce and the public informed about the latest evolving health information during a health emergency is critical to preventing, detecting and responding to infectious disease outbreaks or other health emergencies. Having a well-informed, ready, willing, and skilled workforce and an informed public can help save lives, reduce diseases and suffering, and minimize socio-economic loss in affected communities and countries. Providing "just in time" support and opportunities for learning in health emergencies is much needed for capacity building. In this paper, 'learning intervention' refers to the provision of ad-hoc, focused, or personalized training sessions with the goal of preparing the health workers for emergencies or filling specific knowledge or skill gaps. We refer to 'training methods' as instructional design strategies used to teach someone the necessary knowledge and skills to perform a task. Methods: We conducted a scoping review to map and better understand what learning interventions and training methods have been used in different types of health emergencies and by whom. Studies were identified using six databases (Pubmed/Medline, Embase, Hinari, WorldCat, CABI and Web of Science) and by consulting with experts. Characteristics of studies were mapped and displayed and major topic areas were identified. Results: Of the 319 records that were included, contexts most frequently covered were COVID-19, disasters in general, Ebola and wars. Four prominent topic areas were identified: 1) Knowledge acquisition, 2) Emergency plans, 3) Impact of the learning intervention, and 4) Training methods. Much of the evidence was based on observational methods with few trials, which likely reflects the unique context of each health emergency. Evolution of methods was apparent, particularly in virtual learning. Learning during health emergencies appeared to improve knowledge, general management of the situation, quality of life of both trainers and affected population, satisfaction and clinical outcomes. Conclusion: This is the first scoping review to map the evidence, which serves as a first step in developing urgently needed global guidance to further improve the quality and reach of learning interventions and training methods in this context. [ABSTRACT FROM AUTHOR]

In the three years since the law on adult deceased organ donation consent in England changed to include an opt-out system, there has been no discernible change to donation rates. The lack of a positive impact on donation rates was predicted by many of those who took part in debates before and during the passage of the Bill through Parliament. This invites the question as to why England moved to an opt-out system for organ donation despite equivocal evidence of likely benefit and opposition from expert health professional organisations. To address this question qualitative analyses of Parliamentary debates on organ donation was undertaken. This revealed a shift from a dominant position, which gave primacy to the evidence of likely effects, towards a more normative position where a deemed consent option was viewed as the 'correct thing to do' and the limited and conflicting evidence viewed in a positive light. By 2017, following Wales's move to an opt-out system, together with continued lobbying for similar changes for England by professional and patient groups, alongside sustained public popularity for organ donation, the balance of opinion had shifted towards a system where deemed consent would become the default position for most English adults [ABSTRACT FROM AUTHOR]

Objectives: To investigate the experiences of women with kidney disease, residing in the United Kingdom (UK), living through the first 18 months of the COVID‐19 pandemic with specific focus on preconception decision‐making, family planning, and parenting. Methods: We conducted a mixed‐methods study, comprising an online survey and follow‐up interviews, with UK‐resident women aged 18–50. Results: We received 431 surveys and conducted 30 interviews. Half (n = 221, 51%) of the survey respondents considered that COVID‐19 influenced the quality of communication with healthcare professionals and 68% (n = 295) felt that the pandemic disrupted their support networks. Interview participants indicated that delayed and canceled appointments caused anxiety, grief, and loss of pregnancy options. Women's perception of themselves as (good) mothers as well as their capacity to have and raise a child, meet partners, and sustain healthy relationships was negatively affected by the "clinically extremely vulnerable" label. Women's trust in their healthcare was dismantled by miscommunication and variation in lockdown rules that caused confusion and increased worry. Women reported that COVID‐19 contributed to postnatal depression, excessive concern over infant mortality, preoccupation over others following rules, and catastrophising. Conclusion: Some women in the UK with chronic kidney disease lost or missed their opportunity to have children during the pandemic. Future pandemic planners need to look more holistically and longer term at what is and is not classed as an emergency, both in how services are reconfigured and how people with chronic conditions are identified, communicated with, and treated. [ABSTRACT FROM AUTHOR]

Aims: To identify the needs, experiences and preferences of women with kidney disease in relation to their reproductive health to inform development of shared decision‐making interventions. Design: UK‐wide mixed‐methods convergent design (Sep 20–Aug 21). Methods: Online questionnaire (n = 431) with validated components. Purposively sampled semi‐structured interviews (n = 30). Patient and public input throughout. Findings: Kidney disease was associated with defeminization, negatively affecting current (sexual) relationships and perceptions of future life goals. There was little evidence that shared decision making was taking place. Unplanned pregnancies were common, sometimes influenced by poor care and support and complicated systems. Reasons for (not) wanting children varied. Complicated pregnancies and miscarriages were common. Women often felt that it was more important to be a "good mother" than to address their health needs, which were often unmet and unrecognized. Impacts of pregnancy on disease and options for alternates to pregnancy were not well understood. Conclusion: The needs and reproductive priorities of women are frequently overshadowed by their kidney disease. High‐quality shared decision‐making interventions need to be embedded as routine in a feminized care pathway that includes reproductive health. Research is needed in parallel to examine the effectiveness of interventions and address inequalities. Impact: We do not fully understand the expectations, needs, experiences and preferences of women with kidney disease for planning and starting a family or deciding not to have children. Women lack the knowledge, resources and opportunities to have high‐quality conversations with their healthcare professionals. Decisions are highly personal and related to a number of health, social and cultural factors; individualized approaches to care are essential. Healthcare services need to be redesigned to ensure that women are able to make informed choices about pregnancy and alternative routes to becoming a parent. Patient or Public Contribution: The original proposal for this research came from listening to the experiences of women in clinic who reported unmet needs and detailed experiences of their pregnancies (positive and negative). A patient group was involved in developing the funding application and helped to refine the objectives by sharing their experiences. Two women who are mothers living with kidney disease were co‐opted as core members of the research team. We hosted an interim findings event and invited patients and wider support services (adoption, fertility, surrogacy, education and maternal chronic kidney disease clinics) from across the UK to attend. We followed the UK national standards for patient and public involvement throughout. [ABSTRACT FROM AUTHOR]