122 research outputs found

    ‘We're happy as we are’: the experience of living with possible undiagnosed dementia

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    Institutions of care, moral proximity and demoralisation: The case of the emergency department

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    This article draws on concepts of morality and demoralisation to understand the problematic nature of relationships between staff and patients in public health services. The article uses data from a case study of a UK hospital Emergency Department to show how staff are tasked with the responsibility of treating and caring for patients, while at the same time their actions are shaped by the institutional concerns of accountability and resource management. The data extracts illustrate how such competing agendas create a tension for staff to manage and suggests that, as a consequence of this tension, staff participate in processes of ‘effacement’ that limit the presence of patients and families as a moral demand. The analysis from the Emergency Department case study suggests that demoralisation is an increasingly important lens through which to understand health-care institutions, where contemporary organisational cultures challenge the ethical quality of human interaction

    End-of-life priorities of older adults with terminal illness and caregivers: A qualitative consultation

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    Abstract Background As older adults approach the end‐of‐life (EOL), many are faced with complex decisions including whether to use medical advances to prolong life. Limited information exists on the priorities of older adults at the EOL. Objective This study aimed to explore patient and family experiences and identify factors deemed important to quality EOL care. Method A descriptive qualitative study involving three focus group discussions (n = 18) and six in‐depth interviews with older adults suffering from either a terminal condition and/or caregivers were conducted in NSW, Australia. Data were analysed thematically. Results Seven major themes were identified as follows: quality as a priority, sense of control, life on hold, need for health system support, being at home, talking about death and competent and caring health professionals. An underpinning priority throughout the seven themes was knowing and adhering to patient's wishes. Conclusion Our study highlights that to better adhere to EOL patient's wishes a reorganization of care needs is required. The readiness of the health system to cater for this expectation is questionable as real choices may not be available in acute hospital settings. With an ageing population, a reorganization of care which influences the way we manage terminal patients is required

    Appropriateness of intensive care treatments near the end of life during the COVID-19 pandemic

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    The patient and family perspective on the appropriateness of intensive care unit (ICU) treatments involves preferences, values and social constructs beyond medical criteria. The clinician’s perception of inappropriateness is more reliant on clinical judgment. Earlier consultation with families before ICU admission and patient education on the outcomes of life-sustaining therapies may help reconcile these provider–patient disagreements. However, global emergencies like COVID-19 change the usual paradigm of end-of-life care, as it is a new disease with only scarce predictive information about it. Pandemics can also bring about the burdensome predicament of doctors having to make unwanted choices of rationing access to the ICU when demand for otherwise life-saving resources exceeds supply. Evidence-based prognostic checklists may guide treatment triage but the principles of shared decision-making are unchanged. Yet, they need to be altered with respect to COVID-19, defining likely outcomes and likelihood of benefit for the patient, and clarifying their willingness to take on the risks inherent to being in an ICU for 2 weeks for those eligible. For patients who are admitted during the prodrome of COVID-19 disease, or those who deteriorate in the second week, clinicians have some lead time in hospital to have appropriate discussions about ceilings of treatments offered based on severity

    School-based interventions for preventing HIV, sexually transmitted infections, and pregnancy in adolescents

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    Background School-based sexual and reproductive health programmes are widely accepted as an approach to reducing high-risk sexual behaviour among adolescents. Many studies and systematic reviews have concentrated on measuring effects on knowledge or self-reported behaviour rather than biological outcomes, such as pregnancy or prevalence of sexually transmitted infections (STIs). Objectives To evaluate the effects of school-based sexual and reproductive health programmes on sexually transmitted infections (such as HIV, herpes simplex virus, and syphilis), and pregnancy among adolescents. Search methods We searched MEDLINE, Embase, and the Cochrane Central Register of Controlled Trials (CENTRAL) for published peer-reviewed journal articles; and ClinicalTrials.gov and the World Health Organization's (WHO) International Clinical Trials Registry Platform for prospective trials; AIDS Educaton and Global Information System (AEGIS) and National Library of Medicine (NLM) gateway for conference presentations; and the Centers for Disease Control and Prevention (CDC), UNAIDS, the WHO and the National Health Service (NHS) centre for Reviews and Dissemination (CRD) websites from 1990 to 7 April 2016. We handsearched the reference lists of all relevant papers. Selection criteria\ud We included randomized controlled trials (RCTs), both individually randomized and cluster-randomized, that evaluated school-based programmes aimed at improving the sexual and reproductive health of adolescents. Data collection and analysis Two review authors independently assessed trials for inclusion, evaluated risk of bias, and extracted data. When appropriate, we obtained summary measures of treatment effect through a random-effects meta-analysis and we reported them using risk ratios (RR) with 95% confidence intervals (CIs). We assessed the certainty of the evidence using the GRADE approach. Main results We included eight cluster-RCTs that enrolled 55,157 participants. Five trials were conducted in sub-Saharan Africa (Malawi, South Africa, Tanzania, Zimbabwe, and Kenya), one in Latin America (Chile), and two in Europe (England and Scotland). Sexual and reproductive health educational programmes Six trials evaluated school-based educational interventions. In these trials, the educational programmes evaluated had no demonstrable effect on the prevalence of HIV (RR 1.03, 95% CI 0.80 to 1.32, three trials; 14,163 participants; low certainty evidence), or other STIs (herpes simplex virus prevalence: RR 1.04, 95% CI 0.94 to 1.15; three trials, 17,445 participants; moderate certainty evidence; syphilis prevalence: RR 0.81, 95% CI 0.47 to 1.39; one trial, 6977 participants; low certainty evidence). There was also no apparent effect on the number of young women who were pregnant at the end of the trial (RR 0.99, 95% CI 0.84 to 1.16; three trials, 8280 participants; moderate certainty evidence). Material or monetary incentive-based programmes to promote school attendance Two trials evaluated incentive-based programmes to promote school attendance. In these two trials, the incentives used had no demonstrable effect on HIV prevalence (RR 1.23, 95% CI 0.51 to 2.96; two trials, 3805 participants; low certainty evidence). Compared to controls, the prevalence of herpes simplex virus infection was lower in young women receiving a monthly cash incentive to stay in school (RR 0.30, 95% CI 0.11 to 0.85), but not in young people given free school uniforms (Data not pooled, two trials, 7229 participants; very low certainty evidence). One trial evaluated the effects on syphilis and the prevalence was too low to detect or exclude effects confidently (RR 0.41, 95% CI 0.05 to 3.27; one trial, 1291 participants; very low certainty evidence). However, the number of young women who were pregnant at the end of the trial was lower among those who received incentives (RR 0.76, 95% CI 0.58 to 0.99; two trials, 4200 participants; low certainty evidence). Combined educational and incentive-based programmes The single trial that evaluated free school uniforms also included a trial arm in which participants received both uniforms and a programme of sexual and reproductive education. In this trial arm herpes simplex virus infection was reduced (RR 0.82, 95% CI 0.68 to 0.99; one trial, 5899 participants; low certainty evidence), predominantly in young women, but no effect was detected for HIV or pregnancy (low certainty evidence). Authors' conclusions There is a continued need to provide health services to adolescents that include contraceptive choices and condoms and that involve them in the design of services. Schools may be a good place in which to provide these services. There is little evidence that educational curriculum-based programmes alone are effective in improving sexual and reproductive health outcomes for adolescents. Incentive-based interventions that focus on keeping young people in secondary school may reduce adolescent pregnancy but further trials are needed to confirm this

    The everyday lives of children in care: using a sociological perspective to inform social work practice

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    This chapter has three main aims. Firstly, it introduces how contemporary sociological approaches to the study of childhood can enable us to make sense of the social worlds of children and young people. Secondly, the chapter reports on how we are drawing on such approaches to inform the establishment of an on-going research project with looked after children, (Extra)ordinary Lives, and some findings from the research are presented. Thirdly, the chapter explores the relevance of sociological approaches to the study of childhood for direct practice, drawing out implications of both the research methods and some of the research findings fo r those who work with children and young people

    Rights, 'right on' or the right thing to do? A critical exploration of young people's engagement in participative social work research

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    This paper provides a detailed analysis of the participative processes of a research project with young people that was overtly ‘participative’ in its aim. In doing so it attempts to contribute to debates about participative research. In this paper we join with others in critiquing the notion that research which aims to be participative is necessarily more enabling for participants, is ethically or morally superior to other types of research or produces ‘better’ research. Nonetheless, we argue that participatory research can make a central contribution, in providing an ethical, epistemological and political framework and in the potential for rich ‘findings’. We understand participative research with children and young people to mean that which involves participants in some of the process of research, such as question-setting, research design, ethical review, data generation, analysis or dissemination rather than simply providing data through more or less engaging methods. We understand participation as not being something just about children or about children in opposition to adults, but as part of a complex inter-subjective relationship between adults and children (where both adults and children are being encouraged to step outside normative generational roles). An analysis of participation can potentially examine microexchanges between adults and children, between children, and between adults, as well as a broader picture. In what follows we argue that, whilst the discipline of childhood studies has engaged critically with the notion of children’s participation in society, there has been less critical discussion, and perhaps indeed some complacency, about the claims made for participatory research with children

    Travelers’ Reported Preventive Health Behavior in Jinja, Uganda

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    Introduction: Increasing international travel to low-income areas is confronting travelers with new health threats. This study investigated international travelers’ health advice, behavior, and information needs in a low-income setting.Methods: This is a descriptive and cross-sectional study. Between October 27–31, 2014, 127 semi-structured surveys were conducted in Jinja, Uganda with international travelers selected by central-location intercept convenience sampling. Data was analyzed using SPSS software.Results: Among all the 127 respondents, 88% sought pre-travel medical advice. The surveys revealed a pool of many traveling longer than six months (32.3%) with 72.3% of those being for volunteer purposes, while 41.2% of those traveling for less than one month (40.2%) were volunteers. Compliance with malaria chemoprophylaxis was reported by 94.1% of those traveling less than one month and 53.7% of those traveling longer than six months. Malaria topped the list of travel concerns among travelers, with sexually transmitted infections and Ebola virus disease cited as additional concerns.Conclusion: Long-term travelers were heavily represented in the current sample, perhaps due to current events harming short-term tourism. Consistent with prior research, compliance with malaria prophylaxis decreased with length of travel as younger respondents trended toward poorer compliance. This survey highlights the need to accurately define “traveler” and its specific categories to better assess health risks for future travelers

    Comparison of Continuous versus Categorical Tumor Measurement-Based Metrics to Predict Overall Survival in Cancer Treatment Trials

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    The categorical definition of response assessed via the Response Evaluation Criteria in Solid Tumors has documented limitations. We sought to identify alternative metrics for tumor response that improve prediction of overall survival

    New genetic loci implicated in fasting glucose homeostasis and their impact on type 2 diabetes risk.

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    Levels of circulating glucose are tightly regulated. To identify new loci influencing glycemic traits, we performed meta-analyses of 21 genome-wide association studies informative for fasting glucose, fasting insulin and indices of beta-cell function (HOMA-B) and insulin resistance (HOMA-IR) in up to 46,186 nondiabetic participants. Follow-up of 25 loci in up to 76,558 additional subjects identified 16 loci associated with fasting glucose and HOMA-B and two loci associated with fasting insulin and HOMA-IR. These include nine loci newly associated with fasting glucose (in or near ADCY5, MADD, ADRA2A, CRY2, FADS1, GLIS3, SLC2A2, PROX1 and C2CD4B) and one influencing fasting insulin and HOMA-IR (near IGF1). We also demonstrated association of ADCY5, PROX1, GCK, GCKR and DGKB-TMEM195 with type 2 diabetes. Within these loci, likely biological candidate genes influence signal transduction, cell proliferation, development, glucose-sensing and circadian regulation. Our results demonstrate that genetic studies of glycemic traits can identify type 2 diabetes risk loci, as well as loci containing gene variants that are associated with a modest elevation in glucose levels but are not associated with overt diabetes
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