Clinician and patient experiences of managing and living with oral and dental manifestations of scleroderma: A scoping review.

Oral and dental manifestations of scleroderma are extremely common, yet they are often overlooked within rheumatology and poorly understood within dentistry. Previous research has indicated the need to understand the oral and dental experiences of people living with scleroderma and those involved in their care. This scoping review aims, for the first time, to comprehensively map what is known regarding the identification and management of oral and dental manifestations of scleroderma, how these are experienced by people living with scleroderma, and to explore key characteristics of barriers and enablers to good oral and dental care in scleroderma. A scoping review was conducted using six databases (Embase, PubMed, PsychINFO, ASSIA, Scopus and SSCI), according to the Preferred Reporting Items for Systematic Reviews and Meta-analyses - extension for Scoping Review. Grey literature was also included. Studies were eligible for inclusion if the full text and abstract were available in English, published between 2002 and 2022, and focused on the concept of oral and dental care in adults with scleroderma, either relating to identification and management, enablers and barriers to best practice, or patient experiences and well-being. Qualitative research which seeks to understand patients' lived experiences was a notable gap in the literature. Similarly, there was a significant lack of focus on the oral and dental manifestations of scleroderma in rheumatology. Three key features were identified which would facilitate best practice in research and clinical contexts: the necessity of multidisciplinary care; the necessity of centralising patient experience; and the necessity of mitigating barriers to dental care. We conclude that increased awareness of scleroderma within dentistry and streamlining referral procedures between the disciplines of dentistry and rheumatology, to enable the early identification and management of scleroderma, are crucial.

Homecare workers needs and experiences in end of life care: rapid review.

BACKGROUND: Social homecare workers provide essential care to those living at home at the end of life. In the context of a service experiencing difficulties in attracting and retaining staff, we have limited knowledge about the training, support needs and experiences of this group. AIM: To gain a timely understanding from the international literature of the experience, training and support needs of homecare workers providing end-of-life care. METHODS: We conducted a rapid review and narrative synthesis using the recommendations of the Cochrane Rapid Reviews Methods Group. Building on a previous review, social homecare worker and end-of-life search terms were used to identify studies. Quality appraisal was conducted using a multimethods tool. DATA SOURCES: CINAHL and Medline databases (2011-2023; English language). RESULTS: 19 papers were included representing 2510 participants (91% women) providing new and deeper insights. Four themes were generated: (1) emotional support; homecare workers need to manage complex and distressing situations, navigating their own, their clients' and clients' family, emotions; (2) interaction with other social and healthcare workers; homecare workers are isolated from, and undervalued and poorly understood by the wider healthcare team; (3) training and support; recognising the deteriorating client, symptom management, practicalities around death, communications skills and supervision; (4) recognising good practice; examples of good practice exist but data regarding effectiveness or implementation of interventions are scant. CONCLUSIONS: Social homecare workers are essential for end-of-life care at home but are inadequately trained, often isolated and underappreciated. Our findings are important for policy-makers addressing this crucial challenge, and service providers in social and healthcare.

Correction: Supported: Supporting, enabling, and sustaining homecare workers to deliver end-of-life care: A qualitative study protocol.

[This corrects the article DOI: 10.1371/journal.pone.0291525.].

Supported: Supporting, enabling, and sustaining homecare workers to deliver end-of-life care: A qualitative study protocol.

BACKGROUND: Homecare workers provide essential care at home for people at end-of-life but are often poorly trained and supported. AIM: To explore the experiences and needs of homecare workers and the views of homecare clients and carers, and other community-based health and social care staff about the homecare worker role, including identification of good practice. METHODS: In this qualitative exploratory study, we will conduct 150 semi-structured interviews with homecare workers within three geographic English localities chosen for maximum socio-demographic variation. Eligible participants will be consenting adults providing care services (workers [n = 45], managers [n = 15] community practitioners [n = 30]), receiving care (clients thought to be in the last 6 months of life [n = 30], family carers [n = 15], or commissioners of homecare services supporting end-of-life care [n = 15]. Interviews may adopt a Pictor-guided or standard semi-structured approach according to their preference. Managers and commissioners can contribute to an online focus group if preferred. A range of recruitment strategies will be used, including through homecare agencies, local authorities, local NHS services, charities, voluntary sector groups and social media. Interviews and focus groups will be recorded, transcribed, anonymised, and analysed adopting a case-based approach for each geographic area within-case and then comparison across cases using reflexive thematic analysis. The design and analysis will be informed by Bronfenbrenner's Adapted Ecological Systems theory. This study is registered on the Research Registry (No.8613). CONTRIBUTION: We will provide evidence on ways to improve the experiences and address the needs of homecare workers in relation to caring for people nearing end-of-life. It will offer insight into good practice around supporting homecare workers including responding to their training and development needs. Findings will inform subsequent stages of an evaluation-phase study of a training resource for homecare workers.

Ask Me Anything": Lessons learned in implementing a COVID-19 vaccine information initiative in Massachusetts jails.

As a group of medical professionals, faith-community leaders, and jail staff, we launched a COVID-19 vaccine Q&A initiative across Massachusetts county jails to increase COVID-19 vaccine confidence and uptake among detained individuals. Here we describe the lessons learned in developing and implementing this initiative.

Using the Acute Flaccid Paralysis Surveillance System to Identify Cases of Acute Flaccid Myelitis, Australia, 2000‒2018.

Since 2012, the United States has reported a distinct syndrome of acute flaccid paralysis (AFP) with anterior myelitis, predominantly in children. This polio-like syndrome was termed acute flaccid myelitis (AFM). Australia routinely conducts AFP surveillance to exclude poliomyelitis. We reviewed 915 AFP cases in Australia for children <15 years of age during 2000‒2018 and reclassified a subset to AFM by using the US Council of State and Territorial Epidemiologists case definition. We confirmed 37 AFM cases by using magnetic resonance imaging findings and 4 probable AFM cases on the basis of cerebrospinal fluid pleocytosis. Nonpolio enteroviruses were detected in 33% of AFM cases from which stool samples were tested. Average annual AFM incidence was 0.07 cases/100,000 person-years in children <15 years of age. AFM occurred sporadically in Australia before 2010 but regularly since then, indicating sustained, albeit rare, clinical manifestation in children. The AFP surveillance system in Australia is well-positioned to identify future AFM cases.

Dressings and dignity in community nursing.

Although dignity has been widely explored in the context of healthcare, it has rarely been the subject of empirical exploration when care is delivered by community district nursing teams. This paper demonstrates how a commonplace community nursing task (changing dressings) can constitute a clinical lens through which to explore the ways in which community nurses can influence patients' dignity. This ethnographic study involved two research methods: interviews with patients and nurses (n=22) and observations of clinical interactions (n=62). Dignity can manifest during routine interactions between community nurses and patients. Patient-participants identified malodour from their ill-bodies as a particular threat to dignity. Nurses can reinforce the dignity of their patients through relational aspects of care and the successful concealment of 'leaky' bodies.

SARS-CoV-2 infections among Australian passengers on the Diamond Princess cruise ship: A retrospective cohort study.

BACKGROUND: Prolonged periods of confined living on a cruise ship increase the risk for respiratory disease transmission. We describe the epidemiology and clinical characteristics of a SARS-CoV-2 outbreak in Australian passengers on the Diamond Princess cruise ship and provide recommendations to mitigate future cruise ship outbreaks. METHODS: We conducted a retrospective cohort study of Australian passengers who travelled on the Diamond Princess from 20 January until 4 February 2020 and were either hospitalised, remained in Japan or repatriated. The main outcome measures included an epidemic curve, demographics, symptoms, clinical and radiological signs, risk factors and length of time to clear infection. RESULTS: Among 223 Australian passengers, 56 were confirmed SARS-CoV-2 positive. Forty-nine cases had data available and of these over 70% had symptoms consistent with COVID-19. Of symptomatic cases, 17% showed signs and symptoms before the ship implemented quarantine and a further two-thirds had symptoms within one incubation period of quarantine commencing. Prior to ship-based quarantine, exposure to a close contact or cabin mate later confirmed SARS-CoV-2 positive was associated with a 3.78 fold (95% CI, 2.24-6.37) higher risk of COVID-19 acquisition compared to non-exposed passengers. Exposure to a positive cabin mate during the ship's quarantine carried a relative risk of 6.18 (95% CI, 1.96-19.46) of developing COVID-19. Persistently asymptomatic cases represented 29% of total cases. The median time to the first of two consecutive negative PCR-based SARS-CoV-2 assays was 13 days for asymptomatic cases and 19 days for symptomatic cases (p = 0.002). CONCLUSION: Ship based quarantine was effective at reducing transmission of SARS-CoV-2 amongst Australian passengers, but the risk of infection was higher if an individual shared a cabin or was a close contact of a confirmed case. Managing COVID-19 in cruise ship passengers is challenging and requires enhanced health measures and access to onshore quarantine and isolation facilities.

Health and social concerns about living in three communities affected by per- and polyfluoroalkyl substances (PFAS): A qualitative study in Australia.

BACKGROUND: Exposure to per- and polyfluoroalkyl substances (PFAS) is a public health issue globally. In Australia high concentrations of PFAS have been found in environments close to sites where Aqueous Film Forming Foams (AFFF) were historically used for firefighting activities. This has resulted in significant community concern about the potential long-term health effects of these chemicals. OBJECTIVE: We describe residents' perceptions and experiences of PFAS in three regional Australian towns where exposure has occurred. METHODS: We conducted focus groups to generate free-flowing open discussion on PFAS in three affected communities, including some with significant numbers of First Nations Peoples. We recruited participants using a range of media outlets and postal services. Focus group transcripts were analysed thematically to identify major shared concerns using Atlas Ti. RESULTS: One hundred and eighty residents attended fifteen focus groups that were conducted in the three communities. They included 69 First Nations People living in three communities near the town of Katherine in the Northern Territory. Study participants were concerned about potential physical health effects of exposure to PFAS, such as cancer clusters, unexplained deaths, potential exacerbation of existing health conditions, and the future health of their children. They expressed feelings of stress and anxiety about living with uncertainty related to the possible health and the socio-economic impacts of PFAS contamination in their communities. CONCLUSION: While research has concentrated on the physical health effects of PFAS, more attention needs to be given to the immediate psychosocial impacts of living in an affected community.

Problematising the Discourse of 'Post-AIDS'.

This paper reflects on the meanings of 'post-AIDS' in the Global North and South. I bring together contemporary arguments to suggest that the notion of 'post-AIDS' is, at best, misplaced, not least because its starting point remains a biotechnical one. Drawing on aspects of the sub-Saharan African experience, this essay suggests that, despite significant shifts in access to antiretroviral therapy (ART), HIV continues to be fundamentally shaped by economic determinants and social and cultural practices. In this essay, I question the certainty of the discourse of (Western biomedical) 'positive progress' (Johnson et al. 2015), which underpins the 'post-AIDS' narrative, and suggest that living with HIV and AIDS in our contemporary global context is a life lived with ongoing complexity, stigma and chronicity. I suggest that HIV in the Global North shares many characteristics with HIV in the Global South yet differs in significant ways, not least in the fact that a resource-rich context generates an environment where health and social care support is possible, and, mostly, usual. In both contexts, however, the experience of living with a highly stigmatized illness with no cure in both the Global South and North suggests that this is a point of shared experience.

Prevalence of Campylobacter coli and Campylobacter jejuni in Retail Chicken, Beef, Lamb, and Pork Products in Three Australian States.

The aim of this study was to investigate the prevalence and distribution of Campylobacter species in a variety of fresh and frozen meat and offal products collected from retail outlets in New South Wales (NSW), Queensland (Qld), and Victoria (Vic). A total of 1,490 chicken, beef, lamb, and pork samples were collected from Australian supermarkets and butcher shops over a 2-year sampling period (October 2016 to October 2018). Campylobacter spp. were detected in 90% of chicken meat and 73% of chicken offal products (giblet and liver), with significantly lower prevalence in lamb (38%), pork (31%), and beef (14%) offal (kidney and liver). Although retail chicken meat was frequently contaminated with Campylobacter, the level of contamination was generally low. Where quantitative analysis was conducted, 98% of chicken meat samples, on average, had <10,000 CFU Campylobacter per carcass, with 10% <21 CFU per carcass. Campylobacter coli was the most frequently recovered species in chicken meat collected in NSW (53%) and Vic (56%) and in chicken offal collected in NSW (77%), Qld (59%), and Vic (58%). In beef, lamb, and pork offal, C. jejuni was generally the most common species (50 to 86%), with the exception of pork offal collected in NSW, where C. coli was more prevalent (69%). Campylobacter prevalence was significantly higher in fresh lamb (46%) and pork (31%) offal than in frozen offal (17 and 11%, respectively). For chicken, beef, and pork offal, the prevalence of Campylobacter spp. was significantly higher on delicatessen products compared with prepackaged products. This study demonstrated that meat and offal products are frequently contaminated with Campylobacter. However, the prevalence is markedly different in different meats, and the level of chicken meat portion contamination is generally low. By identifying the types of meat and offal products types that pose the greatest risk of Campylobacter infection to consumers, targeted control strategies can be developed.

'There's no pill to help you deal with the guilt and shame': Contemporary experiences of HIV in the United Kingdom.

The experience of living with HIV, in the global north, has changed significantly over the past 20 years. This is largely the result of effective biomedical methods of treatment and prevention. HIV is now widely considered to be a long-term condition like many others - it has been argued that HIV has been 'normalised'. Drawing on online qualitative survey data, with respondents aged 18-35 years, diagnosed with HIV in the past 5 years, this research explores contemporary subjective experiences of being diagnosed, and living, with HIV in the United Kingdom. The data reveal ambiguous experiences and expectations, as the 'normative' status of HIV exists alongside ongoing experiences of fear, shame and stigma - maintaining its status as the most 'social' of diseases. In rendering HIV 'everyday', the space to articulate (and experience) the 'difference' which attaches to the virus has contracted, making it difficult to express ambivalence and fear in the face of a positive, largely biomedical, discourse. In this article, the concepts of normalisation and chronicity provide an analytical framework through which to explore the complexity of the 'sick role' and 'illness work' in HIV.

Central masked adjudication of stroke diagnosis at trial entry offered no advantage over diagnosis by local clinicians: Secondary analysis and simulation.

BACKGROUND: Central adjudication of stroke type is commonly implemented in large multicentre clinical trials. We investigated the effect of central adjudication of diagnosis of stroke type at trial entry in the Efficacy of Nitric Oxide in Stroke (ENOS) trial. METHODS: ENOS recruited patients with acute ischaemic or haemorrhagic stroke, and diagnostic adjudication was carried out using cranial scans. For this study, diagnoses made by local site clinicians were compared with those by central, masked adjudicators using kappa statistics. The trial primary analysis and subgroup analysis by stroke type were re-analysed using stroke diagnosis made by local clinicians, and simulations were used to assess the impact of increased non-differential misclassification and subgroup effects. RESULTS: Agreement on stroke type (Ischaemic, Intracerebral Haemorrhage, Unknown stroke type, No-stroke) was high (κ = 0.92). Adjudication of stroke type had no impact on the primary outcome or subgroup analysis by stroke type. With misclassification increased to 10 times the level observed in ENOS and a simulated subgroup effect present, adjudication would have affected trial conclusions. CONCLUSIONS: Stroke type at trial entry was diagnosed accurately by local clinicians in ENOS. Adjudication of stroke type by central adjudicators had no measurable effect on trial conclusions. Diagnostic adjudication may be important if diagnosis is complex and a treatment-diagnosis interaction is expected.

Mosquito and Virus Surveillance as a Predictor of Human Ross River Virus Infection in South-West Western Australia: How Useful Is It?

Mosquito and virus surveillance systems are widely used in Western Australia (WA) to support public health efforts to reduce mosquito-borne disease. However, these programs are costly to maintain on a long-term basis. Therefore, we aimed to assess the validity of mosquito numbers and Ross River virus (RRV) isolates from surveillance trap sites as predictors of human RRV cases in south-west WA between 2003 and 2014. Using negative binomial regression modeling, mosquito surveillance was found to be a useful tool for predicting human RRV cases. In eight of the nine traps, when adjusted for season, there was an increased risk of RRV cases associated with elevated mosquito numbers detected 1 month before the onset of human cases for at least one quartile compared with the reference group. The most predictive urban trap sites were located near saltmarsh mosquito habitat, bushland that could sustain macropods and densely populated residential suburbs. This convergence of environments could allow enzootic transmission of RRV to spillover and infect the human population. Close proximity of urban trap sites to each other suggested these sites could be reduced. Ross River virus isolates were infrequent at some trap sites, so ceasing RRV isolation from mosquitoes at these sites or where isolates were not predictive of human cases could be considered. In future, trap sites could be reduced for routine surveillance, allowing other environments to be monitored to broaden the understanding of RRV ecology in the region. A more cost-effective and efficient surveillance program may result from these modifications.

Estimating the number of injection drug users in greater Victoria, Canada using capture-recapture methods.

BACKGROUND: Population size estimation is critical for planning public health programmes for injection drug users. Estimation is difficult, as these populations are considered 'hidden' or 'hard to reach'. The currently accepted population size estimate for greater Victoria, Canada is between 1,500 and 2,000 individuals, which is dated prior to the year 2000, and is likely an underestimate. METHODS: We used three mark-recapture methods (the Lincoln-Petersen estimator, Huggins' model, and Pledger's model) to estimate population size using cross-sectional survey data collected in 2003 and 2005. Data come from a closed population with two time-ordered samples from the same source. We compare our estimates with the currently accepted estimate that is based on the registry of a Victoria needle exchange. RESULTS: All methods provided population size estimates that were higher than the currently accepted estimate. Huggins' method produced wider confidence intervals. Point estimates of population size from the three methods ranged from 3,329 to 3,342. CONCLUSIONS: Our estimates will aid health authorities in planning for harm reduction programmes. Repeating the methods as further phases of I-Track data become available will ensure that the population estimates remain up to date.

Increasing capacity for evidence-based practice through the evidence-based practice academy.

Although mentoring is an important aspect of implementing evidence-based practice (EBP), few models exist for EBP education. The EBP Academy is an innovative, 6-month educational program designed to develop clinical staff as EBP nurse mentors. Sessions provide protected time for participants to work on their EBP projects with assigned mentors who have EBP expertise and similar clinical or research interests. Participants develop EBP projects focused on improving care in their clinical areas. Evaluation of the EBP Academy is based on a four-level model, including participant feedback about the program, perception of meeting program objectives, ability to apply knowledge to practice through EBP projects, and outcome data measured as a result of implementing the EBP changes. By developing EBP mentors, capacity to move nursing practice to a stronger evidence-based foundation can be enhanced. Positive, professional nursing and patient outcomes have been demonstrated when structured EBP education is provided.

Does depression predict the use of urgent and unscheduled care by people with long term conditions? A systematic review with meta-analysis.

BACKGROUND: Factors that drive the use of urgent healthcare among people with chronic physical illness (i.e. long term conditions-LTCs) are poorly understood. We conducted a systematic review with meta analysis to examine the strength of association between depression and subsequent use of urgent healthcare among people with LTCs. METHODS: Electronic searches of MEDLINE, EMBASE, PSYCINFO, CINAHL, the British Nursing Library and the Cochrane Library 2011 were conducted, supplemented by hand-searching bibliographies, citation tracing eligible studies and asking experts about relevant studies. Studies were eligible for inclusion if they: i)used prospective cohort design, ii)included patients with diabetes, asthma, chronic obstructive pulmonary disease or coronary heart disease, iii)used a standardised measure of depression, and iv)assessed urgent healthcare utilisation prospectively. Data on the subjects recruited, methods used and the association between depression and subsequent urgent healthcare utilisation were extracted from eligible studies. Odds ratios (ORs) were calculated for each study and pooled using random effects models. RESULTS: 16 independent studies were identified. Pooled effects indicated that depression was associated with a 49% increase in the odds of urgent healthcare utilisation (OR=1.49, p<.0005). This effect was not significantly affected by publication bias or inclusion of studies of low quality. Effects were much smaller and non-significant among the 3 studies that controlled for other covariates, including severity of illness (OR=1.13, p=.31). CONCLUSIONS: Depression was associated with increased urgent healthcare use, but not in the minority of studies that controlled for other covariates. This possibly suggests confounding, but the severity measures may themselves have been influenced by depression.

'My biggest fear was that people would reject me once they knew my status...': stigma as experienced by patients in an HIV/AIDS clinic in Johannesburg, South Africa.

Stigma is not a new concept; however, it remains highly significant in the context of HIV/AIDS in South Africa. There is wide consensus that HIV/AIDS-related stigma compromises the well-being of people living with the disease. This paper is part of a larger study that seeks to understand the social and cultural complexity related to the provision and outcomes of antiretroviral therapy (ART) in South Africa. It explores and analyses how patients on ART perceived and experienced stigma and how it has shaped their behaviour towards, as well as their understanding of the epidemic. The data have been collected by means of in-depth face-to-face interviews, conducted between June and November 2007, with a sample of 44 patients in an HIV/AIDS clinic in a resource-limited setting in Johannesburg, South Africa. The findings reveal that the level of felt and anticipated stigma is intense and affects all dimensions of living with HIV/AIDS, particularly disclosure and treatment. Stigma permeates the experience of HIV-positive people on ART who participated in this study. The intensity of HIV/AIDS-related stigma can threaten to compromise the value of ART, thus impacting on the daily lives of people living with HIV/AIDS (PLWHA). This study suggests that three decades into the epidemic, stigmatisation remains a core feature of the patient experience of HIV/AIDS. In the clinic in which this research was conducted, HIV/AIDS was regarded as a chronic condition increasingly manageable by ongoing access to ART. However, this approach was not shared by many family members, neighbours and employers who held highly stigmatised views.

"They (ARVs) are my life, without them I'm nothing"--experiences of patients attending a HIV/AIDS clinic in Johannesburg, South Africa.

This paper is a part of a larger study that explores the "social complexity" of antiretroviral therapy (ART), in resource-limited environments. Drawing on in-depth interviews with a sample of 44 patients in an urban HIV/AIDS clinic in Johannesburg, South Africa, this paper examines how people with HIV/AIDS conceptualize their illness and its treatment in this context. The paper concludes that the fear of stigma plays a significant role in patients' experiences throughout the disease trajectory. Yet, demonstrates that there are indications that ARVs are transforming the experience of living with HIV/AIDS and a process of normalisation is taking place. Despite the resource-limited context and, often, lack of family and community support, patients see the ARVs as 'life saving' and express their long-term commitment to adhere to the drug regimen as well as their trust in health professionals.