10 research outputs found

    Stigmatisation, Exaggeration, and Contradiction: An Analysis of Scientific and Clinical Content in Canadian Print Media Discourse About Fetal Alcohol Spectrum Disorder

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    Background: Fetal alcohol spectrum disorder (FASD), a complex diagnosis that includes a wide range of neurodevelopmental disabilities, results from exposure to alcohol in the womb. FASD remains poorly understood by Canadians, which could contribute to reported stigma faced by both people with FASD and women who drink alcohol while pregnant. Methods: To better understand how information about FASD is presented in the public sphere, we conducted content analysis of 286 articles from ten major English-language Canadian newspapers (2002-2015). We used inductive coding to derive a coding guide from the data, and then iteratively applied identified codes back onto the sample, checking inter-coder reliability. Results: We identified six major themes related to clinical and scientific media content: 1) prevalence of FASD and of women’s alcohol consumption; 2) research related to FASD; 3) diagnosis of FASD; 4) treatment of FASD and maternal substance abuse; 5) primary disabilities associated with FASD; and 6) effects of alcohol exposure during pregnancy. Discussion: Across these six themes, we discuss three instances of ethically consequential exaggeration and misrepresentation: 1) exaggeration about FASD rates in Indigenous communities; 2) contradiction between articles about the effects of prenatal alcohol exposure; and 3) scientifically accurate information that neglects the social context of alcohol use and abuse by women. Respectively, these representations could lead to harmful stereotyped beliefs about Indigenous peoples, might generate confusion about healthy choices during pregnancy, and may unhelpfully inflame debates about sensitive issues surrounding women’s choices

    Reducing the environmental impact of surgery on a global scale: systematic review and co-prioritization with healthcare workers in 132 countries

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    Abstract Background Healthcare cannot achieve net-zero carbon without addressing operating theatres. The aim of this study was to prioritize feasible interventions to reduce the environmental impact of operating theatres. Methods This study adopted a four-phase Delphi consensus co-prioritization methodology. In phase 1, a systematic review of published interventions and global consultation of perioperative healthcare professionals were used to longlist interventions. In phase 2, iterative thematic analysis consolidated comparable interventions into a shortlist. In phase 3, the shortlist was co-prioritized based on patient and clinician views on acceptability, feasibility, and safety. In phase 4, ranked lists of interventions were presented by their relevance to high-income countries and low–middle-income countries. Results In phase 1, 43 interventions were identified, which had low uptake in practice according to 3042 professionals globally. In phase 2, a shortlist of 15 intervention domains was generated. In phase 3, interventions were deemed acceptable for more than 90 per cent of patients except for reducing general anaesthesia (84 per cent) and re-sterilization of ‘single-use’ consumables (86 per cent). In phase 4, the top three shortlisted interventions for high-income countries were: introducing recycling; reducing use of anaesthetic gases; and appropriate clinical waste processing. In phase 4, the top three shortlisted interventions for low–middle-income countries were: introducing reusable surgical devices; reducing use of consumables; and reducing the use of general anaesthesia. Conclusion This is a step toward environmentally sustainable operating environments with actionable interventions applicable to both high– and low–middle–income countries

    Back to basics: everyday ethics and patient-centered care bridging the concepts through Parkinson's disease patient perspectives

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    Research in bioethics has often focused on issues surrounding life and death. These more 'dramatic’ ethical issues are considered 'exciting’, are often tied to new technology and novel interventions, and can receive widespread media attention. Certainly, these issues are challenging and important to consider as they can have impactful consequences. However, there are many other ethical issues that arise within health care that have profound consequences. These issues are situated in the day-to-day experiences of healthcare practitioners, patients, caregivers, and researchers, and have sometimes been referred to as everyday ethics. The work presented in this thesis is concerned with the everyday ethical issues that arise in the provision of care. In particular, this thesis focuses on everyday ethics for Parkinson’s disease patients in a patient-centred care clinic. The particular experience of Parkinson’s disease patients was considered likely to encounter everyday ethical issues. Furthermore, the context of patient-centred care provided an ideal paradigm from which to conduct this research, as it emphasizes the importance of patient perspectives in the provision of care. We identified a particular knowledge gap in the understanding of Parkinson’s disease patient preferences for involvement in healthcare decision making. To fill this knowledge gap, qualitative research involving in-depth interviews with Parkinson’s patients was conducted. We found that overall, patients preferred shared decision making, although preferences for decisional control varied between individuals and depending on the decision, context, and relationships. Patient preferences for information were more stable, with most patients wanting information, although limits to provision of information were identified. The importance of the patient-physician relationship and communication was emphasized, and patients were found to support a relational approach to care.We found that Parkinson’s patients described some issues in the provision of their care that could be considered everyday ethics. To unpack the concept of everyday ethics, we conducted a scoping review that reviewed how the term has been utilized in the literature, and identified its core features. To advance the concept further, we developed an integrative model of everyday ethics, drawing from various normative theories. We also conducted a scoping review of the Parkinson’s disease bioethics literature, to examine the extent to which everyday ethics is being discussed in this particular context, and found that everyday ethics makes up a minority of the discussions in this literature. This work highlighted the importance of everyday ethics, as well as the fact that everyday ethics remains under discussed.The findings in this thesis point to the utility of patient perspectives for insight into everyday ethics and patient-centred care. Indeed, patient-centred care and everyday ethics are ideally suited to inform each other, and both can utilize patient perspectives to gain insight into theory and practice. Patient-centred care and everyday ethics are united in that they focus on the patient experience, and both aim to improve care by addressing ethical issues relevant to the patient. Increasing the focus of bioethics on everyday ethics and patient perspectives is recommended, as it can help us to address the most salient and pressing issues in health care and better promote respect for persons.La recherche en bioéthique a souvent été concentrée sur les questions de la vie et de la mort. Ces enjeux éthique «dramatiques» sont captivants, sont souvent liés aux nouvelles technologies et aux nouveaux traitements et peuvent faire l’objet des médias. Certes, ces enjeux éthiques peuvent avoir des conséquences percutantes, donc ils méritent considération et discussion. Cependant, il y a beaucoup d'autres enjeux éthiques qui ont aussi des conséquences profondes dans le contexte des soins de santé. Ces enjeux sont situés dans les expériences quotidiennes des parties prenantes et ce genre de problèmes est parfois nommé l’éthique du quotidien. Cette thèse s’attarde aux enjeux éthiques qui se produisent dans la prestation des soins quotidiens. En particulier, cette thèse se concentre sur l'éthique du quotidien pour les patients atteints de la maladie de Parkinson dans une clinique de soins centrés sur le patient. Les patients atteints de la maladie de Parkinson sont fort probables de rencontrer des enjeux éthiques quotidiens dans la prestation des soins chroniques nécessaires pour leur maladie. De plus, une clinique de soins centrés sur le patient offre un contexte idéal pour mener cette recherche car elle met l'accent sur les perspectives des patients.À cet égard, nous avons identifié une lacune en matière des connaissances quant à la compréhension des préférences des patients atteints de la maladie de Parkinson en ce qui a trait à leur participation dans la prise de décisions de santé. Pour combler cette lacune, nous avons mené une recherche qualitative basée sur des entrevues avec les patients atteints de la maladie de Parkinson. Nous avons constaté que ces patients préfèrent un modèle de prise de décision partagé. D’abord les préférences pour le contrôle décisionnel varient parmi les individus et selon la décision, le contexte ainsi que les relations interpersonnelles en cause. La plupart des patients veulent des informations au sujet de leur maladie, avec quelques limites. L'importance de la relation médecin-patient et de la communication a été soulignée et les patients ont soutenu une approche relationnelle aux soins.Afin d’améliorer compréhension du concept d'éthique quotidienne, nous avons mené une revue de survol de la littérature («scoping review»). Cette recherche a examiné la façon dont le terme «éthique au quotidien» a été utilisé dans la littérature, et a identifié ses caractéristiques fondamentales. Afin d’avancer le concept, nous nous avons servi de diverses théories normatives pour développer un modèle intégré de l’éthique du quotidienne. Nous avons également mené une revue de survol de la littérature bioéthique associée à la maladie de Parkinson. Nous avons trouvé que l'éthique du quotidien comprend une minorité des discussions dans cette littérature. Ce travail a mis en évidence l'importance de l'éthique du quotidien, et le fait que l'éthique du quotidien est peu discutée.Les résultats discutés dans cette thèse soulignent l’utilité d’effectuer des recherches sur les perspectives des patients. Ces perspectives peuvent approfondir nos connaissances et notre compréhension des enjeux éthiques quotidiens et des soins centrés sur le patient. En effet, les soins centrés sur le patient et l'éthique du quotidien sont idéalement adaptés pour s’informer l’un l'autre, et les deux peuvent utiliser les perspectives des patients pour mieux comprendre la théorie et la pratique. Les soins centrés sur le patient et l'éthique du quotidien sont unis en tant que les deux mettent l'accent sur l'expérience du patient, et les deux visent à améliorer les soins en abordant les enjeux éthiques pertinents pour le patient. Mettre davantage l'accent sur l'éthique du quotidien et les perspectives du patient dans le cadre de la bioéthique est recommandable. Ceci pourra nous aider à résoudre les problèmes les plus proéminents et les plus urgents dans le cadre des soins de santé et pourrait mieux promouvoir le respect des personnes

    Stigmatisation, Exaggeration, and Contradiction: An Analysis of Scientific and Clinical Content in Canadian Print Media Discourse About Fetal Alcohol Spectrum Disorder

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    Background: Fetal alcohol spectrum disorder (FASD), a complex diagnosis that includes a wide range of neurodevelopmental disabilities, results from exposure to alcohol in the womb. FASD remains poorly understood by Canadians, which could contribute to reported stigma faced by both people with FASD and women who drink alcohol while pregnant. Methods: To better understand how information about FASD is presented in the public sphere, we conducted content analysis of 286 articles from ten major English-language Canadian newspapers (2002-2015). We used inductive coding to derive a coding guide from the data, and then iteratively applied identified codes back onto the sample, checking inter-coder reliability. Results: We identified six major themes related to clinical and scientific media content: 1) prevalence of FASD and of women’s alcohol consumption; 2) research related to FASD; 3) diagnosis of FASD; 4) treatment of FASD and maternal substance abuse; 5) primary disabilities associated with FASD; and 6) effects of alcohol exposure during pregnancy. Discussion: Across these six themes, we discuss three instances of ethically consequential exaggeration and misrepresentation: 1) exaggeration about FASD rates in Indigenous communities; 2) contradiction between articles about the effects of prenatal alcohol exposure; and 3) scientifically accurate information that neglects the social context of alcohol use and abuse by women. Respectively, these representations could lead to harmful stereotyped beliefs about Indigenous peoples, might generate confusion about healthy choices during pregnancy, and may unhelpfully inflame debates about sensitive issues surrounding women’s choices.Contexte : L’ensemble des troubles causés par l’alcoolisation fœtale (ETCAF), un diagnostic complexe qui comprend une vaste gamme de troubles neurodéveloppementaux, résulte de l’exposition à l’alcool dans l’utérus. L’ETCAF demeure mal compris par les Canadiens, ce qui pourrait contribuer à la stigmatisation dont souffrent les personnes atteintes d’ETCAF et les femmes qui consomment de l’alcool pendant leur grossesse. Méthodes : Pour mieux comprendre comment l’information sur l’ETCAF est présentée dans la sphère publique, nous avons analysé le contenu de 286 articles tirés de dix grands journaux canadiens de langue anglaise (2002-2015). Nous avons utilisé le codage inductif pour établir une grille de codage à partir des données, puis nous avons appliqué de façon itérative des codes identifiés sur l’échantillon, en vérifiant la fiabilité intercodeurs. Résultats : Nous avons identifié six grands thèmes liés au contenu cliniques et scientifiques des médias : 1) prévalence de l‘ETCAF et de la consommation d’alcool chez les femmes ; 2) recherche en lien avec l’ETCAF ; 3) diagnostic d’ETCAF ; 4) traitement de l’ETCAF et de l’abus de substances par les mères ; 5) incapacités primaires associés à l’ETCAF ; et 6) effets de l’alcool pendant la grossesse. Discussion : Dans le cadre de ces six thèmes, nous examinons trois types d’exagération et de fausse représentation qui ont des conséquences sur le plan éthique : 1) l’exagération des taux d’ETCAF dans les communautés autochtones ; 2) la contradiction entre les articles sur les effets de l’exposition prénatale à l’alcool ; et 3) l’information scientifiquement exacte qui néglige le contexte social de la consommation et de l’abus d’alcool par les femmes. Respectivement, ces représentations pourraient mener à des croyances stéréotypées préjudiciables au sujet des peuples autochtones, pourraient créer de la confusion quant aux choix sains pendant la grossesse et risqueraient d’enflammer inutilement les débats sur des questions délicates concernant les choix des femmes

    Instrumentalist analyses of the functions of ethics concept-principles: a proposal for synergetic empirical and conceptual enrichment

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    Global variation in postoperative mortality and complications after cancer surgery: a multicentre, prospective cohort study in 82 countries

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    © 2021 The Author(s). Published by Elsevier Ltd. This is an Open Access article under the CC BY-NC-ND 4.0 licenseBackground: 80% of individuals with cancer will require a surgical procedure, yet little comparative data exist on early outcomes in low-income and middle-income countries (LMICs). We compared postoperative outcomes in breast, colorectal, and gastric cancer surgery in hospitals worldwide, focusing on the effect of disease stage and complications on postoperative mortality. Methods: This was a multicentre, international prospective cohort study of consecutive adult patients undergoing surgery for primary breast, colorectal, or gastric cancer requiring a skin incision done under general or neuraxial anaesthesia. The primary outcome was death or major complication within 30 days of surgery. Multilevel logistic regression determined relationships within three-level nested models of patients within hospitals and countries. Hospital-level infrastructure effects were explored with three-way mediation analyses. This study was registered with ClinicalTrials.gov, NCT03471494. Findings: Between April 1, 2018, and Jan 31, 2019, we enrolled 15 958 patients from 428 hospitals in 82 countries (high income 9106 patients, 31 countries; upper-middle income 2721 patients, 23 countries; or lower-middle income 4131 patients, 28 countries). Patients in LMICs presented with more advanced disease compared with patients in high-income countries. 30-day mortality was higher for gastric cancer in low-income or lower-middle-income countries (adjusted odds ratio 3·72, 95% CI 1·70–8·16) and for colorectal cancer in low-income or lower-middle-income countries (4·59, 2·39–8·80) and upper-middle-income countries (2·06, 1·11–3·83). No difference in 30-day mortality was seen in breast cancer. The proportion of patients who died after a major complication was greatest in low-income or lower-middle-income countries (6·15, 3·26–11·59) and upper-middle-income countries (3·89, 2·08–7·29). Postoperative death after complications was partly explained by patient factors (60%) and partly by hospital or country (40%). The absence of consistently available postoperative care facilities was associated with seven to 10 more deaths per 100 major complications in LMICs. Cancer stage alone explained little of the early variation in mortality or postoperative complications. Interpretation: Higher levels of mortality after cancer surgery in LMICs was not fully explained by later presentation of disease. The capacity to rescue patients from surgical complications is a tangible opportunity for meaningful intervention. Early death after cancer surgery might be reduced by policies focusing on strengthening perioperative care systems to detect and intervene in common complications. Funding: National Institute for Health Research Global Health Research Unit

    Effects of hospital facilities on patient outcomes after cancer surgery: an international, prospective, observational study

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    © 2022 The Author(s). Published by Elsevier Ltd. This is an Open Access article under the CC BY 4.0 licenseBackground: Early death after cancer surgery is higher in low-income and middle-income countries (LMICs) compared with in high-income countries, yet the impact of facility characteristics on early postoperative outcomes is unknown. The aim of this study was to examine the association between hospital infrastructure, resource availability, and processes on early outcomes after cancer surgery worldwide. Methods: A multimethods analysis was performed as part of the GlobalSurg 3 study—a multicentre, international, prospective cohort study of patients who had surgery for breast, colorectal, or gastric cancer. The primary outcomes were 30-day mortality and 30-day major complication rates. Potentially beneficial hospital facilities were identified by variable selection to select those associated with 30-day mortality. Adjusted outcomes were determined using generalised estimating equations to account for patient characteristics and country-income group, with population stratification by hospital. Findings: Between April 1, 2018, and April 23, 2019, facility-level data were collected for 9685 patients across 238 hospitals in 66 countries (91 hospitals in 20 high-income countries; 57 hospitals in 19 upper-middle-income countries; and 90 hospitals in 27 low-income to lower-middle-income countries). The availability of five hospital facilities was inversely associated with mortality: ultrasound, CT scanner, critical care unit, opioid analgesia, and oncologist. After adjustment for case-mix and country income group, hospitals with three or fewer of these facilities (62 hospitals, 1294 patients) had higher mortality compared with those with four or five (adjusted odds ratio [OR] 3·85 [95% CI 2·58–5·75]; p<0·0001), with excess mortality predominantly explained by a limited capacity to rescue following the development of major complications (63·0% vs 82·7%; OR 0·35 [0·23–0·53]; p<0·0001). Across LMICs, improvements in hospital facilities would prevent one to three deaths for every 100 patients undergoing surgery for cancer. Interpretation: Hospitals with higher levels of infrastructure and resources have better outcomes after cancer surgery, independent of country income. Without urgent strengthening of hospital infrastructure and resources, the reductions in cancer-associated mortality associated with improved access will not be realised. Funding: National Institute for Health and Care Research
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