To systematically identify, appraise, aggregate and synthesise qualitative evidence on family members’ experiences of end-of-life care (EoLC) in acute hospitals.
A systematic review and qualitative evidence synthesis based on the Joanna Briggs Institute methodology. Primary research, published 2014 onwards was identified using a sequential strategy of electronic and hand searches. Six databases (CINAHL, Medline, Embase, EMCare, PsycINFO, BNI) were systematically searched. Studies that met pre-determined inclusion/exclusion criteria were uniformly appraised using the Critical Appraisal Skills Programme checklist for qualitative research, and synthesised using a meta-aggregative approach. The ENTREQ statement was used as a checklist for reporting the review.
Sixteen studies of European, Australasian and North American origin formed the review. The quality of each study was considered very good in view of a ‘yes’ response to most screening questions. Extracted findings were assembled into 12 categories, and five synthesised findings: Understanding of approaching end of life; essential care at the end of life; interpersonal interactions; environment of care; patient and family care after death.
Enabling and improving peoples’ experience of EoLC must remain part of the vision and mission of hospital organisations. Consideration must be given to the fulfilment of family needs and apparent hallmarks of quality care that appear to influence experiential outcomes.
This review of qualitative research represents the first-stage development of a family-reported experience measure for adult EoLC in the hospital setting. The synthesised findings provide a Western perspective of care practices and environmental factors that are perceived to impact the quality of the care experience. Collectively, the review findings serve as a guide for evidence-informed practice, quality improvement, service evaluation and future research. A developed understanding of the families’ subjective reflections creates reciprocal opportunity to transform experiential insights into practical strategies for professional growth and practice development.
Black, Asian and minority ethnic women are at higher risk of dying during pregnancy, childbirth and postnatally and of experiencing premature birth, stillbirth or neonatal death compared with their White counterparts. Discrimination against women from ethnic minorities is known to negatively impact women's ability to speak up, be heard and their experiences of care. This evidence synthesis analysed Black, Asian and minority ethnic women's experiences of UK maternity services in light of these outcomes.
We conducted a systematic review and qualitative evidence synthesis using the method of Thomas and Harden.
A comprehensive search in AMED, Cinahl, Embase, Medline, PubMed and PsycINFO, alongside research reports from UK maternity charities, was undertaken from 2000 until May 2021. Eligible studies included qualitative research about antenatal, intrapartum and postnatal care, with ethnic minority women in maternity settings of the UK NHS.
Study quality was graded using the Critical Appraisal Skills Programme tool.
Twenty-four studies met the inclusion criteria. Our synthesis highlights how discriminatory practices and communication failures in UK NHS maternity services are failing ethnic minority women.
This synthesis finds evidence of mistreatment and poor care for ethnic minority women in the UK maternity system that may contribute to the poor outcomes reported by MBRRACE. Woman-centred midwifery care is reported as positive for all women but is often experienced as an exception by ethnic minority women in the technocratic birthing system.
Ethnic minority women report positive experiences when in receipt of woman-centred midwifery care. Woman-centred midwifery care is often the exception in the overstretched technocratic UK birthing system. Mistreatment and poor care reported by many ethnic minority women in the UK could inform the inequalities of outcomes identified in the MBRRACE report.
Globally, interest in excellence has grown exponentially, with public and private institutions shifting their attention from meeting targets to achieving excellence. Centres of Excellence (CoEs) are standing at the forefront of healthcare, research and innovations responding to the world’s most complex problems. However, their potential is hindered by conceptual ambiguity. We conducted a global synthesis of the evidence to conceptualise CoEs.
Scoping review, following Arksey and O’Malley’s framework and methodological enhancement by Levac et al and the Preferred Reporting Items for Systematic Reviews and Meta-Analyses extension for Scoping Reviews.
PubMed, Scopus, CINAHL, Google Scholar and the Google engine until 1 January 2021.
Articles that describe CoE as the main theme.
The search resulted in 52 161 potential publications, with 78 articles met the eligibility criteria. The 78 articles were from 33 countries, of which 35 were from the USA, 3 each from Nigeria, South Africa, Spain and India, and 2 each from Ethiopia, Canada, Russia, Colombia, Sweden, Greece and Peru. The rest 17 were from various countries. The articles involved six thematic areas—healthcare, education, research, industry, information technology and general concepts on CoE. The analysis documented success stories of using the brand ‘CoE’—an influential brand to stimulate best practices. We identified 12 essential foundations of CoE—specialised expertise; infrastructure; innovation; high-impact research; quality service; accreditation or standards; leadership; organisational structure; strategy; collaboration and partnership; sustainable funding or financial mechanisms; and entrepreneurship.
CoEs have significant scientific, political, economic and social impacts. However, there are inconsistent use and self-designation of the brand without approval by an independent, external process of evaluation and with high ambiguity between ‘CoEs’ and the ordinary ‘institutions’ or ‘centres’. A comprehensive framework is needed to guide and inspire an institution as a CoE and to help government and funding institutions shape and oversee CoEs.
Approximately 40% of late-life dementia may be prevented by addressing modifiable risk factors, including physical activity and diet. Yet, it is currently unknown how multiple lifestyle factors interact to influence cognition. The ACTIVate Study aims to (1) explore associations between 24-hour time-use and diet compositions with changes in cognition and brain function; and (2) identify duration of time-use behaviours and the dietary compositions to optimise cognition and brain function.
This 3-year prospective longitudinal cohort study will recruit 448 adults aged 60–70 years across Adelaide and Newcastle, Australia. Time-use data will be collected through wrist-worn activity monitors and the Multimedia Activity Recall for Children and Adults. Dietary intake will be assessed using the Australian Eating Survey food frequency questionnaire. The primary outcome will be cognitive function, assessed using the Addenbrooke’s Cognitive Examination-III. Secondary outcomes include structural and functional brain measures using MRI, cerebral arterial pulse measured with diffuse optical tomography, neuroplasticity using simultaneous transcranial magnetic stimulation and electroencephalography, and electrophysiological markers of cognitive control using event-related potential and time frequency analyses. Compositional data analysis, testing for interactions between time point and compositions, will assess longitudinal associations between dependent (cognition, brain function) and independent (time-use and diet compositions) variables.
The ACTIVate Study will be the first to examine associations between time-use and diet compositions, cognition and brain function. Our findings will inform new avenues for multidomain interventions that may more effectively account for the co-dependence between activity and diet behaviours for dementia prevention.
Ethics approval has been obtained from the University of South Australia’s Human Research Ethics committee (202639). Findings will be disseminated through peer-reviewed manuscripts, conference presentations, targeted media releases and community engagement events.
Australia New Zealand Clinical Trials Registry (ACTRN12619001659190).
Sarcoidosis is a multiorgan granulomatous disorder thought to be triggered and influenced by gene–environment interactions. Sarcoidosis affects 45–300/100 000 individuals in the USA and has an increasing mortality rate. The greatest gap in knowledge about sarcoidosis pathobiology is a lack of understanding about the underlying immunological mechanisms driving progressive pulmonary disease. The objective of this study is to define the lung-specific and blood-specific longitudinal changes in the adaptive immune response and their relationship to progressive and non-progressive pulmonary outcomes in patients with recently diagnosed sarcoidosis.
The BRonchoscopy at Initial sarcoidosis diagnosis Targeting longitudinal Endpoints study is a US-based, NIH-sponsored longitudinal blood and bronchoscopy study. Enrolment will occur over four centres with a target sample size of 80 eligible participants within 18 months of tissue diagnosis. Participants will undergo six study visits over 18 months. In addition to serial measurement of lung function, symptom surveys and chest X-rays, participants will undergo collection of blood and two bronchoscopies with bronchoalveolar lavage separated by 6 months. Freshly processed samples will be stained and flow-sorted for isolation of CD4 +T helper (Th1, Th17.0 and Th17.1) and T regulatory cell immune populations, followed by next-generation RNA sequencing. We will construct bioinformatic tools using this gene expression to define sarcoidosis endotypes that associate with progressive and non-progressive pulmonary disease outcomes and validate the tools using an independent cohort.
The study protocol has been approved by the Institutional Review Boards at National Jewish Hospital (IRB# HS-3118), University of Iowa (IRB# 201801750), Johns Hopkins University (IRB# 00149513) and University of California, San Francisco (IRB# 17-23432). All participants will be required to provide written informed consent. Findings will be disseminated via journal publications, scientific conferences, patient advocacy group online content and social media platforms.
Buteyko method is recommended as a non-pharmacological treatment for people with asthma. Although the worldwide interest in the Buteyko method, there is a paucity of studies gathering evidence to support its use. Therefore, we aim to conduct a systematic review and meta-analysis to assess the effects of the Buteyko method in children and adults with asthma.
We will search on Cochrane Central Register of Controlled Trials, MEDLINE, Embase, US National Institutes of Health Ongoing Trials Register ClinicalTrials.gov and WHO International Clinical Trials Registry Platform for studies focusing on the Buteyko method for children and adults with asthma. The searches will be carried out in September 2021 from database’s inception to the present. We will include randomised controlled trials comparing Buteyko method alone with asthma education or inactive control intervention. There will be no restriction on language. Primary outcomes include quality of life, asthma symptoms and adverse events/side effects. Two review authors will independently screen the studies for inclusion and extract data. We will assess the quality of the included studies using the ‘Risk of Bias’ tool. The certainty of the evidence will be assessed using the GRADE approach. Data synthesis will be conducted using Review Manager software. Reporting of the review will follow the Preferred Reporting Items for Systematic Reviews and Meta-Analyses guidance and the Cochrane Handbook for Systematic Reviews of Interventions.
This study will assess and provide evidence for the use of the Buteyko method in people with asthma. We will analyse secondary data and this does not require ethics approval. The findings will be published in peer-reviewed journals, at relevant conferences and will be shared in plain language in social media. Moreover, the findings of this review could guide the direction of healthcare practice and research.
This study aimed to examine the impact of digital stories about aged care residents on staff knowledge and understanding regarding those residents.
More than a quarter of a million older Australians live in residential aged care facilities. This living arrangement can inhibit the expression of a person's sense of identity. Without objects and cues that reflect the person's selfhood, it can be difficult for a person to express their uniqueness. Staff may not sufficiently appreciate the resident's individuality and therefore may not be able to customise care for the resident.
This study used a single-arm trial design.
The study was conducted in four residential aged care facilities. Short digital life stories (3–4 min) of eight residents were constructed by student volunteers over 6 months. Participants (n = 53 care staff) completed a self-report measure of their knowledge and understanding of a resident before and after watching the resident's story. The study adhered to guidelines for Strengthening the Reporting of Observational Studies in Epidemiology (STROBE) (see Appendix S1).
Pre- and post-test scores of the measure were compared using paired samples t-tests. These scores changed significantly, showing an improvement of knowledge and understanding regarding residents.
Watching digital life stories were associated with improvements in knowledge and understanding by staff, and hence have the potential to foster a greater level of understanding of residents by such staff, and more person-centred care practices within residential aged care facilities.
Digital stories about aged care residents are quick and efficient methods for improving aged care staff members' knowledge and understanding of the residents under their care. With such understanding, staff may be able to better customise care for residents, thereby validating residents' sense of identity and elevating residents' quality of life.
The aim of this study was to estimate costs associated with the management of patients with venous leg ulcers (VLUs) from the perspective of the UK National Health Service (NHS). The analysis was undertaken through the Secure Anonymised Information Linkage Databank which brings together and anonymously links a wide range of person‐based data from around 75% of general practitioner (GP) practices within Wales (population coverage ~2.5 million). The data covered an 11‐year period from 2007 to 2017. All patients linked to the relevant codes were tracked through primary care settings, recording the number of GP practice visits (number of days with an event recorded), and wound treatment utilisation (eg, dressings, bandages, etc.) Resources were valued in monetary terms (£ sterling) and the costs were determined from national published sources of unit costs. This is the first attempt to estimate the costs of managing of VLUs using routine data sources. The direct costs to the Welsh NHS are considerable and represent 1.2% of the annual budget. Nurse visits are the main cost driver with annual estimates of £67.8 million. At a UK level, these costs amount to £1.98 billion. Dressings and compression bandages are also major cost drivers with annual Welsh estimates of £828 790. The direct cost of managing patients with VLUs is £7706 per patient per annum, which translates to an annual cost of over £2 billion, when extrapolated to the UK population. The primary cost driver is the number of district nurse visits. Initiatives to reduce healing times through improving accuracy of initial diagnosis, and improved evidence‐based treatment pathways would result in major financial savings.
by Natalia Ongtengco, Hamidou Thiam, Zola Collins, Elly Lou De Jesus, Caryn E. Peterson, Tianxiu Wang, Ellen Hendrix, Youssoupha Ndiaye, Babacar Gueye, Omar Gassama, Abdoul Aziz Kasse, Adama Faye, Jennifer S. Smith, Marian Fitzgibbon, Jon Andrew DykensCervical cancer is the leading cause of female cancer deaths in Sénégal which is ranked 17th in incidence globally, however, the screening rate there is very low. Nuanced gendered perceptions and health behaviors of both women and men play a significant role in women’s health. Our study analyzed gender differences on perceptions of gender roles, discrimination, cancer attitudes, cancer stigma, and influences in healthcare decision making within our study population to inform ongoing cervical cancer prevention work in the rural region of Kédougou, Sénégal. We conducted a cross-sectional survey of 158 participants, 101 women and 57 men (ages 30–59) across nine non-probability-sampled communities from October 2018 through February 2019. Bivariate analysis was conducted to assess gender differences across all variables. We also conducted analyses to determine whether there were significant differences in beliefs and attitudes, by screening behavior and by education. We found significant gender differences regarding the perception of a woman’s role (P
Trauma patients with a serious injury to the head or neck can remain immobilised with a cervical collar (C‐collar) device in situ and are subsequently exposed to device‐related skin integrity threats. This study aimed to determine the incidence and risk factors associated with the development of C‐collar‐related pressure injures (CRPIs) in an intensive care unit. This retrospective longitudinal cohort study was conducted in an Australian metropolitan intensive care unit. Following ethical approval, data from patients over 18 years, who received a C‐collar were retrieved over a 9‐year period. Chi square and t‐tests were used to identify variables associated with CRPI development. A logistic regression model was employed to analyse the risk factors. Data from 906 patients were analysed. Nine‐year pressure injury incidence was 16.9% (n = 154/906). Pressure injury development directly associated with a C‐collar increased by 33% with each repositioning episode (odds ratio 1.328, 95% confidence interval 1.024‐1.723, P = .033). Time in the C‐collar (10.4 to 2.5 days, P = .002) and length of stay in intensive care unit (ICU) (20.1 to 16.1 days, P < .001) were associated with pressure injury development. Patients with C‐collar devices are a vulnerable group at risk for pressure injury development because of their immobility and length of ICU stay.
by Kelly M. J. Simpson, Siobhan M. Mor, Michael P. Ward, Julie Collins, James Flint, Grant A. Hill-Cawthorne, Moataz Abd El GhanySalmonella enterica serovar Wangata is an important pathogen in New South Wales (NSW), Australia. The incidence of S. Wangata is increasing and transmission is suspected to be via a non-food source. A recent outbreak investigation of sources of S. Wangata recovered isolates from humans, domestic animals, wildlife and the environment. Here, we extend that investigation by characterising and describing the genomic determinates of these isolates. We found that Australian S. Wangata isolates from different sources exhibited similar virulence and antimicrobial resistance gene profiles. There were no major genomic differences between isolates obtained from different geographical regions within Australia or from different host species. In addition, we found evidence (low number of SNPs and identical virulence gene profiles) suggestive of an international transmission event between Australia and the United Kingdom. This study supports the hypothesis that S. Wangata is shared between different hosts in NSW, Australia and provides strong justification for the continued use of genomic surveillance of Salmonella.
by Carrie McMahon, James L. Trevaskis, Christoph Carter, Kevin Holsapple, Kirsten White, Moupali Das, Sean Collins, Hal Martin, Leigh Ann Burns-NaasAn increasing prevalence of overweight and obesity in people living with HIV has been associated with initiation of antiretroviral therapy with integrase strand transfer inhibitors (INSTIs). An off-target inhibition of the endogenous ligand binding to the human melanocortin 4 receptor (MC4R) has been suggested as a potential mechanism for clinical body weight gain following initiation of dolutegravir, an INSTI. In this study, we interrogated several INSTIs for their capacity for antagonism or agonism of MC4R in an in vitro cell-based assays including at concentrations far exceeding plasma concentrations reached at the recommended dosages. Our results indicate that while INSTIs do exhibit the capacity to antagonize MC4R, this occurs at concentrations well above predicted clinical exposure and is thus an implausible explanation for INSTI-associated weight gain.
Inpatient falls continue to be a significant clinical issue, and while malnutrition is a known risk factors for falls, few studies have investigated its association with inpatient falls. This study aimed to explore the independent association between malnutrition and fall risk as well as harm from falls in hospital inpatients.
Malnutrition identified in annual malnutrition audits was combined with inpatient fall data captured through the electronic patient incident reporting system in the 12 months following audit days. Audit data were available for 1,849 inpatients across 2011–2015, and covariate associations between age, gender, BMI, malnutrition, falls and harmful falls were analysed. The reporting of this paper is in accordance with the Strengthening the Reporting of Observational Studies in Epidemiology (STROBE) recommendations (see Appendix S1).
The prevalence of malnutrition was 32.4% (n = 543), and 171 (9.2%) inpatients experienced a fall with 0.7% (n = 13) categorised as harmful. In bivariate analysis, patients who fell were more likely to be older (median 79.0 vs. 70.0 years; p < .0001) or malnourished (40.9% vs. 31.5%; p = .021). Malnutrition (p < .0001) and having a lower BMI (p = .026) were significant predictors of harmful falls. Regression modelling demonstrated that only increasing age increased the likelihood of having an inpatient fall (OR 1.022 95% CI 1.021–1.046; p < .0001). Malnourished inpatients were almost 8 times more likely to have a harmful fall than those not malnourished (OR 7.94 95% CI 1.457–43.338; p = .017), independent of age and BMI.
Malnourished patients are more likely to experience a harmful fall. Assessment of malnutrition should be incorporated into fall risk assessments as a way of highlighting those patients at greater risk and to link to nutritional care pathways.
Single‐ and multiple‐component therapies are recommended in professional guidelines for managing chronic insomnia. Systematic reviews point to insufficient evidence of the comparative effectiveness of these therapies, which is required for treatment decision making.
To compare the effectiveness of three single‐component and one multiple‐component therapies on short‐term sleep outcomes.
The data were obtained from 517 persons with chronic insomnia, enrolled in a partially randomized preference trial. They were allocated to the single‐component therapies: sleep education and hygiene (SEH), stimulus control therapy (SCT), and sleep restriction therapy (SRT), or the multiple‐component therapy (MCT). The outcomes, perceived insomnia severity and sleep parameters, were assessed with established measures at pre and posttest. Repeated measure analysis of variance was used to compare the outcomes across therapy groups over time. The clinical relevance of the therapies’ effects was evaluated by examining the effect size and remission rate.
The four therapies differed in their effectiveness in reducing perceived insomnia severity and improving sleep outcomes. SEH was least effective. SCT, SRT, and MCT were moderately effective. SCT and SRT demonstrated slightly higher remission rates than MCT for perceived insomnia severity and some sleep parameters.
SCT and SRT are viable single‐component therapies that produce clinical benefits. Single‐component insomnia treatment may be more convenient to implement in the primary care setting due to the reduced number of treatment recommendations compared to MCT.