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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]

Objectives: We aimed to identify migraine treatment features preferred by patients and treatment outcomes most valued by patients. Background: The values and preferences of people living with migraine are critical for both the choice of acute therapy and management approach of migraine. Methods: 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. Results: 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. Conclusion: 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. [ABSTRACT FROM AUTHOR]

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. [ABSTRACT FROM AUTHOR]

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. [ABSTRACT FROM AUTHOR]

Context: 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. Objective: This study aimed to assess the efficacy of coproductive research in chronic kidney disease service improvement to achieve greater sustainability. Design: 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. Setting and Participants: 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. Findings: 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. Discussion and Conclusions: 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. Patient or Public Contribution: Involved in developing research questions, study design, management and conduct, interpretation of evidence and dissemination. [ABSTRACT FROM AUTHOR]

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. [ABSTRACT FROM AUTHOR]

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. [ABSTRACT FROM AUTHOR]

To evaluate the effectiveness of psychosocial interventions for men with prostate cancer in improving quality of life ( Qo L), self-efficacy and knowledge and in reducing distress, uncertainty and depression. We searched for trials using a range of electronic databases including the Cochrane Central Register of Controlled Trials ( CENTRAL), MEDLINE, EMBASE and Psyc INFO to October 2013, together with hand searching of journals and reference lists. Randomised controlled trials were eligible if they included psychosocial interventions that explicitly used one or a combination of the following approaches: cognitive behavioural, psycho-educational, supportive and counselling. Interventions had to be delivered or facilitated by trained or lay personnel. Our outcomes were an improvement in Qo L, self-efficacy and knowledge and a reduction in distress, uncertainty and depression. Pairs of review authors independently extracted data and assessed risk of bias. We analysed data using standardised mean differences ( SMDs), random-effects models and 95% confidence intervals ( CIs). In all, 19 studies with a total of 3 204 men, with a diagnosis of prostate cancer, comparing psychosocial interventions vs usual care were included in this review. Men in the psychosocial intervention group had a small, statistically significant improvement in the physical component of general health-related Qo L ( GHQo L) at end of intervention ( SMD 0.12, 95% CI 0.01-0.22) based on low quality evidence. There was no clear evidence of benefit associated with psychosocial interventions for the mental component of GHQo L at end of intervention ( SMD −0.04, 95% CI −0.15 to 0.06) based on moderate quality evidence. At end of intervention, cancer-related Qo L showed a small improvement after psychosocial interventions ( SMD 0.21, 95% CI 0.04-0.39). For prostate cancer-specific and symptom-related Qo L, the differences between intervention and control groups were not significant. There was no clear evidence that psychosocial interventions were beneficial in improving self-efficacy at end of intervention ( SMD 0.16, 95% CI −0.05 to 0.38) based on very low quality evidence. Men in the psychosocial intervention group had a moderate increase in prostate cancer knowledge at end of intervention ( SMD 0.51, 95% CI 0.32-0.71) based on very low quality evidence. A small increase in knowledge with psychosocial interventions was noted at 3 months after intervention ( SMD 0.31, 95% CI 0.04-0.58). The results for uncertainty ( SMD −0.05, 95% CI −0.35 to 0.26) and distress ( SMD 0.02, 95% CI −0.11 to 0.15) at end of intervention were compatible with both benefit and harm based on very low quality evidence. Finally, there was no clear evidence of benefit associated with psychosocial interventions for depression at end of intervention ( SMD −0.18, 95% CI −0.51 to 0.15) based on very low quality evidence. The overall risk of bias in the included studies was unclear or high, primarily as the result of performance bias. No data about stage of disease or treatment with androgen-deprivation therapy were extractable for subgroup analysis. Only one study addressed adverse effects. Overall, this review shows that psychosocial interventions may have small, short-term beneficial effects on certain domains of wellbeing, as measured by the physical component of GHQo L and cancer-related Qo L when compared with usual care. Prostate cancer knowledge was also increased. However, this review failed to show a statistically significant effect on other domains such as symptom-related Qo L, self-efficacy, uncertainty, distress or depression. Moreover, when beneficial effects were seen, it remained uncertain whether the magnitude of effect was large enough to be considered clinically important. The quality of evidence for most outcomes was rated as very low according to the Grading of Recommendations Assessment, Development, and Evaluation ( GRADE) system, reflecting study limitations, loss to follow-up, study heterogeneity and small sample sizes. We were unable to perform meaningful subgroup analyses based on disease stage or treatment method. Although some findings of this review are encouraging, they do not provide sufficiently strong evidence to permit meaningful conclusions about the effects of these interventions in men with prostate cancer. Additional well executed and transparently reported research studies are necessary to establish the role of psychosocial interventions in men with prostate cancer. [ABSTRACT FROM AUTHOR]

Title. Adequacy of health-related quality of life measures in children under 5 years old: systematic review Aim. This paper is a report of a systematic review to assess the adequacy of measures evaluating generic health-related quality of life outcomes in children less than 5 years old. Background. Evaluating generic health-related quality of life outcomes in children is important to assess the effectiveness of interventions, nursing care and services. Methods. A methodological systematic review was carried out for the period 1980–2005 in accord with the UK Centre of Reviews and Dissemination guidelines on systematic reviews. We searched multiple electronic databases, hand-searched key texts, and contacted investigators. We included all English language publications describing primary empirical research of generic health-related quality of life, health status, functional status or wellbeing measures, with published psychometric evidence. All measures (proxy and/or self-complete) for use in children under 5 years were included; single dimension measures were excluded. Results. Seventy-six papers (70 studies) referring to 16 generic health-related quality of life measures met our inclusion criteria. None of the 16 measures were adequate in terms of their conceptual content or psychometric criteria; quality scores were poor (0–8). No current, generic health-related quality of life measure is both psychometrically and conceptually robust, although the Health Utilities Index has the most comprehensive psychometric data published. However, not all dimensions of health are assessed, with little evidence of reliability in children under 5 years of age. Conclusion. There is a need to develop empirically robust and conceptually comprehensive health-related quality of life measures, particularly in the context of proxy-completion measures for very young children. [ABSTRACT FROM AUTHOR]

This paper describes the resource use and costs involved in supporting ventilator-dependent children and young people at home compared with those in hospital. Accommodation arrangements, patterns of service and resource use in the year prior to interview were recorded for 35 index cases aged 1–18 years using a piloted variant of the Client Services Receipt Inventory. Costs to the National Health Service (NHS), social services (excluding local authority housing costs), education (excluding basic statutory education costs), and voluntary and independent sectors were included. For each of the resources and supports used, a unit cost was calculated at 2002 prices, which was a close approximation to the long-run marginal opportunity cost. Of the 35 cases, 24 lived at home, seven were in hospital and four had transferred from hospital to home during the previous 12 months. Twelve used ventilation 24-h per day. The children and young people made intensive use of NHS services and resources. In total, the 35 cases cost just over £6.2 million to support during the year prior to interview; 92% of the costs were borne by the NHS. It was mostly, but not always, cheaper for children to live at home. A care package including qualified nurses and 24-h care (mean = £239 855 per year) was more expensive than a children's ward (mean = £155 158 per year), but less expensive than a long-term ventilation unit (mean = £301 888 per year) or an intensive care unit (mean = £630 388 per year), where most cases live whilst awaiting discharge. Support costs for children with complex ventilator dependency were seven times higher than those with simple ventilator dependency. These estimates provide commissioners and managers with good-quality data to inform the implementation of recently published national guidance on care for these children and young people. [ABSTRACT FROM AUTHOR]

This paper examines the sleep disruption experienced by 36 families of technology-dependent children living at home in the United Kingdom. The paper begins with an overview of the qualitative study in which parents' experiences of sleep disruption emerged as a major theme. We then describe the nature of and reasons for the sleep disruption, the help families received with care overnight, and the effects of sleep disruption on parents in particular. This is followed by discussion of the implications of the findings for policy and practice as well as future research. [ABSTRACT FROM AUTHOR]

In the present study, families’ experiences of caring for a technology-dependent child were examined from a temporal perspective. This involved exploring the multiple ‘technological’, ‘social’ and ‘natural’ rhythms and routines around which the families’ lives were variously structured. A purposive sample of 36 families with technology-dependent children who used one or more medical devices on a daily basis was recruited. Devices included feeding pumps, suction machines, dialysis machines and ventilators. Using mainly qualitative methods, children, parents and siblings were interviewed to establish what the care routines involved and how these impacted on family members. The authors found that the rhythms and routines of care varied across the sample, depending on the type and number of devices used, the individual child's needs, and who provided technical care during the day and/or at night at home and in other settings. While the children's health and quality of life benefited from the technology, the time demands of the care routines and lack of compatibility with other social and institutional timeframes had some negative implications for the children and their families, limiting their participation in school, employment and social life in general. The need to use and oversee the use of some medical technologies at night also meant that many parents suffered regular disruption to their sleep. In conclusion, the authors argue that the care of technology-dependent children at home places considerable time demands on families. Families have little or no access to suitably trained carers who can provide technical care required in the home or away from the home to give parents and the whole family a break from caring where required. More trained carers and short-term care provision, better coordination of services and improvements in the design of devices would all help to reduce the negative effects of the care routines on families. [ABSTRACT FROM AUTHOR]

• Children who are dependent on ventilators currently spend many months and in some cases years in intensive care units when they no longer have a medical need to be there. • This article presents the views of 18 young ‘ventilator-dependent’ people (and their parents) who experienced prolonged periods of time in intensive care units and compares their experiences with published literature. • Findings strongly suggest that living in an intensive care unit is inappropriate and detrimental to health and well-being. • Recommendations are made regarding the need for alternative placements, appropriate nursing care, the review of funding and discharge management procedures, and upholding children’s rights. [ABSTRACT FROM AUTHOR]

The article discusses the editorial policy for the acceptance research reviews submitted for publication.

The author reflects on some of the methods that children's nurses use to keep children distracted during an immunization. She suggests that nurses' work is often under recognized but is very important in medical care. She argues that when nurses engage in small talk with children during vaccinations both children and their parents benefit.