Although healthcare workers play a crucial role in helping curb the hazardous health impact of coronavirus disease 2019, their lives and major functioning have been greatly affected by the pandemic. This study examined the effects of the COVID-19 pandemic on the quality of life of Malaysian healthcare workers and its predictive factors. An online sample of 389 university-based healthcare workers completed questionnaires on demographics, clinical features, COVID-19-related stressors, psychological experiences, and perceived social support after the movement (...) lockdown was lifted. All domains of QoL were within the norms of the general population except for social relationship QoL, which was lower than the norm. Multiple linear regression analysis indicated that COVID-19-related stressors and psychological sequelae predicted lower QoL. Conversely, greater perceived social support from friends and significant others predicted higher QoL. Clinical and demographic characteristics predicted QoL to a lesser extent: A history of pre-existing medical illness was associated only with lower physical health QoL, whereas older age and being single, divorced, or widowed were only predictive of higher environmental QoL. Efforts to enhance QoL among healthcare workers in response to the pandemic should focus on mitigating COVID-19-related stressors and psychological sequelae and facilitating social support. (shrink)

One element of the American Society for Bioethics and Humanities’ recently-piloted quality attestation portfolio for clinical ethics consultants is a “philosophy of clinical ethics consultation statement” describing the candidate’s approach to clinical ethics consultation. To date, these statements have been under-explored in the literature, in contrast to philosophy statements in other fields such as academic teaching. In this article, I argue there is merit in expanding the content of these statements beyond clinical ethics consultation alone to describe the author’s (...) approach to other important “domains” of healthcare ethics practice. I also claim such statements have at least three additional uses outside quality attestation: as a reflective practice learning tool to increase role clarity among practicing healthcare ethicists and bioethics fellows; assisting practicing healthcare ethicists in clarifying role expectations with those they work with; and helping inform developing professional practice standards. (shrink)

Engagement with the historical and theoretical underpinnings of measuring quality of life (QoL) and patient‐reported outcomes (PROs) in healthcare is important. Ideas and values that shape such practices—and in the endgame, people's lives—might otherwise remain unexamined, be taken for granted or even essentialized. Our aim is to explicate and theoretically discuss the philosophical tenets underlying the practices of QoL assessment and PRO measurement in relation to the notion of person‐centredness. First, we engage with the late‐modern history of the (...) concept of QoL and the act of assessing and measuring it. Working with the historical method of genealogy, we describe the development of both QoL assessments and PRO measures (PROMs) within healthcare by accounting for the contextual conditions for their possibility. In this way, the historical and philosophical underpinnings of these measurement practices are highlighted. We move on to analyse theoretical and philosophical underpinnings regarding the use of PROMs and QoL assessments in clinical practice, as demonstrated in review studies thereof. Finally, we offer a critical analysis regarding the state of theory in the literature and conclude that, although improved person‐centredness is an implied driver of QoL assessments and PROMs in clinical practice, enhanced theoretical underpinning of the development of QoL assessments is called for. (shrink)

Wearable sensors are an integral part of the new telemedicine concept supporting the idea that Information Technologies will improve the quality and efficiency of healthcare. The use of sensors in diagnosis, treatment and monitoring of patients not only potentially changes medical practice but also one’s relationship with one’s body and mind, as well as the role and responsibilities of patients and healthcare professionals. In this paper, we focus on knowledge assessment of the online communities of Fitbit and (...) the Quantified Self movement. Through their online forums, we investigate how users’ knowledge claims, shared experiences and imaginations about wearable sensors interrogate or confirm the narratives through which they are introduced to the publics. Citizen initiatives like the Quantified Self movement claim the right to ‘own’ the sensor generated data. But how these data can be used through traditional healthcare systems is an open question. More importantly, wearable sensors trigger a social function that is transformative of the current idea of care and healthcare, focused on sharing, socialising and collectively reflecting about individual problems. Whether this is aligned with current policy making about healthcare, whose central narrative is focused on efficiency and productivity, is to be seen. (shrink)

In this paper, we argue that there are important ethical questions about healthcare improvement which are underexplored. We start by drawing on two existing literatures: first, the prevailing, primarily governance-oriented, application of ethics to healthcare ‘quality improvement’ (QI), and second, the application of QI to healthcare ethics. We show that these are insufficient for ethical analysis of healthcare improvement. In pursuit of a broader agenda for an ethics of healthcare improvement, we note that QI (...) and ethics can, in some respects, be treated as closely related concerns and not simply as externally related agendas. To support our argument, we explore the gap between ‘quality’ and ‘ethics’ discourses and ask about the possible differences between ‘good quality healthcare’ and ‘good healthcare’. We suggest that the word ‘quality’ both adds to and subtracts from the idea of ‘good healthcare’, and in particular that the technicist inflection of quality discourses needs to be set in the context of broader conceptualisations of healthcare improvement. We introduce the distinction between quality as a measurable property and quality as an evaluative judgement, suggesting that a core, but neglected, question for an ethics of healthcare improvement is striking the balance between these two conceptions of quality. (shrink)

Ethics is a foundational competency in healthcare inherent in everyday nursing practice. Therefore, the promotion of qualified nurses’ and nursing students’ moral competence is essential to ensure ethically high-quality and sustainable healthcare. The aim of this integrative literature review is to identify the factors contributing to the promotion of qualified nurses’ and nursing students’ moral competence. The review has been registered in PROSPERO (CRD42023386947) and reported according to the PRISMA guideline. Focusing on qualified nurses’ and nursing students’ (...) moral competence, a literature search was undertaken in January 2023 in six scientific databases: CINAHL, Cochrane Library, PsycINFO, PubMed Medline, Scopus and Web of Science. Empirical studies written in English without time limitation were eligible for inclusion. A total of 29 full texts were retrieved and included out of 5233 citations. Quality appraisal was employed using Joanna Briggs Institute checklists and the Mixed Method Appraisal Tool. Data were analysed using inductive content analysis. Research about the factors contributing to the promotion of qualified nurses’ and nursing students’ moral competence is limited and mainly explored using descriptive research designs. The contributing factors were identified as comprising two main categories: (1) human factors, consisting of four categories: individual, social, managerial and professional factors, and ten sub-categories; and (2) structural factors, consisting of four categories: educational, environmental, organisational and societal factors, and eight sub-categories. This review provides knowledge about the factors contributing to the promotion of qualified nurses’ and nursing students’ moral competence for the use of researchers, nurse educators, managers, organisations and policymakers. More research about the contributing factors is needed using complex intervention, implementation and multiple methods designs to ensure ethically sustainable healthcare. (shrink)

Traditional approaches in healthcare have been challenged giving way to broader forms of users’ participation in treatment. In this article we present the Health 2.0 movement as an example of relational and participatory practices in healthcare. Health 2.0 is an approach in which participation is the major aim, aspiring to reshape the system into more collaborative and less hierarchical relationships. We offer two illustrations in order to discuss how Health 2.0 is related and can contribute to a positive (...) uptake of patient’s knowledge, which implies challenging healthcare practices exclusively focused on scientific expertise. In contrast, the illustrations we discuss focus on relations and cultural practices, searching for responsive and context-sensitive interventions, entertaining multiple views and allowing space for creativity. Finally we introduce two relational resources to contribute with the development and sustainability of Health 2.0 practices: Relational being and edge of fluidity. Those are resources aiming to engage professionals in a type of conversation with their clients, which is different from the hierarchical, linear and fact-oriented approach. This conversation aims at creating a space where the voices of all involved are welcomed, raising different opinions and points of view, bringing up new light and possibilities to the problem being investigated. These resources may be useful for those who are interested in improving quality in healthcare by investing in collaboration, contextual sensitivity and relational engagement. (shrink)

BackgroundThe healthcare system is among the institutions operating under the most challenging conditions during the period of outbreaks like pandemic which affects the whole world and leads to deaths. During pandemics that affect the society in terms of socioeconomic and mental aspects, the mental health of healthcare teams, who undertake a heavy social and work load, is affected by this situation.AimThis research was conducted with the aim of determining the effect of stress, anxiety, and burnout levels of (...) class='Hi'>healthcare professionals caring for COVID-19 patients on their quality of life.MethodThe sample of the study consisted of a total of 240 healthcare professionals, determined by random sampling method among the healthcare professionals working in pandemic hospitals in Tokat city center, Turkey. Perceived Stress Scale, Spielberger State-Trait Anxiety Inventory, Maslach Burnout Inventory and Quality of Life Scale were used in the study conducted in the relational screening model.FindingsWhile the stress, trait anxiety, and quality of life mean scores of healthcare professionals who were female, married and had children were higher than the other groups, high, moderate, negative, and positive correlations were found among all variables.ConclusionThe research concluded that the stress, anxiety, and burnout of healthcare workers caring for COVID-19 patients affected their quality of life. (shrink)

Background: Poverty and social deprivation have adverse effects on health outcomes and place a significant burden on healthcare systems. There are some actions that can be taken to tackle them from within healthcare institutions, but clinicians who seek to make frontline services more responsive to the social determinants of health and the social context of people’s lives can face a range of ethical challenges. We summarise and consider a case in which clinicians introduced a poverty screening initiative into (...) paediatric practice using the discourse and methodology of healthcare quality improvement. -/- Discussion: Whilst suggesting that interventions like the PSI are a potentially valuable extension of clinical roles, which take advantage of the unique affordances of clinical settings, we argue that there is a tendency for such settings to continuously reproduce a narrower set of norms. We illustrate how the framing of an initiative as QI can help legitimate and secure funding for practical efforts to help address social ends from within clinical service, but also how it can constrain and disguise the value of this work. A combination of methodological emphases within QI and managerialism within healthcare institutions leads to the prioritisation, often implicitly, of a limited set of aims and governing values for healthcare. This can act as an obstacle to a genuine broadening of the clinical agenda, reinforcing norms of clinical practice that effectively push poverty ‘off limits.’ We set out the ethical dilemmas facing clinicians who seek to navigate this landscape in order to address poverty and the social determinants of health. -/- Conclusions: We suggest that reclaiming QI as a more deliberative tool that is sensitive to these ethical dilemmas can enable managers, clinicians and patients to pursue health-related values and ends, broadly conceived, as part of an expansive range of social and personal goods. (shrink)

UK-based research conducted within a healthcare setting generally requires approval from the National Research Ethics Service. Research ethics committees are required to assess a vast range of proposals, differing in both their topic and methodology. We argue the methodological benchmarks with which research ethics committees are generally familiar and which form the basis of assessments of quality do not fit with the aims and objectives of many forms of qualitative inquiry and their more iterative goals of describing social (...) processes/mechanisms and making visible the complexities of social practices. We review current debates in the literature related to ethical review and social research, and illustrate the importance of re-visiting the notion of ethics in healthcare research. (shrink)

Both healthcare professionals and the healthcare system must defend each patient's health individually while simultaneously seeking to protect the population's health in general. Nowadays, there is an important increase in the cost of healthcare supply, mainly due to the developments of medical science, the public's expectations and the demographic ageing. Since healthcare resources are not unlimited, it is obvious that immoderate consumption of them by certain patients limits the use of the same funds by others. Therefore, (...) we have to seek an optimal distribution of the existing resources in order to manage a constriction of expenses, especially under the circumstances of the modern economic crisis. The criteria of effectiveness and efficiency should be used. Health policies focus on both the public's behaviour and the rules of medical practice. Under the modern challenges the physician's role is particularly important for the protection of the patient's health and the promotion of public health. (shrink)

Examining the ways and extent to which systemic factors affect health outcomes with regard to quality, affordability and access to curative healthcare, this explorative book compares the relative merits of tax-funded Beveridge systems and insurance-based Bismarck systems. The Law and Policy of Healthcare Financing charts and compares healthcare system outcomes throughout 11 countries, from the UK to Colombia. Thematic chapters investigate the economic and legal explanations for the relevant similarities, variations and trends across the globe. Concluding (...) that systemic factors may be less significant than previously believed, this comprehensive book notes that no one system consistently outperforms the others, yet incentives and funding improvements may lift performances across all curative healthcare systems. Analytical and comparative, this book will be of interest to academics working in the fields of health law and health economics. Public authorities including health ministries, policymakers and international health organisations will also find this to be an invaluable resource. (shrink)

Under the Second Demographic Transition, alternative forms of living arrangement are on the rise. The aim of this article is to compare quality of life in children living in married and cohabiting families. We present the results of representative research conducted in Slovakia in 2018 (N = 1,010 respondents). We tested whether children brought up in traditional married families had better material resources and healthcare, fewer behavioural problems, better peer relations and spent more leisure time with their parents (...) than children brought up by cohabiting parents. We also investigated whether number of children in the family and net monthly household income affected the children’s quality of life. The results show that there were almost no differences in quality of life between children brought up by married and by cohabiting parents and that number of children in the family and level of net monthly household income affected only the child’s material resources. (shrink)

Objective: To determine whether a moral reasoning exercise can improve response quality to surveys of healthcare priorities Methods: A randomised internet survey focussing on patient age in healthcare allocation was repeated twice. From 2574 internet panel members from the USA and Canada, 2020 (79%) completed the baseline survey and 1247 (62%) completed the follow-up. We elicited respondent preferences for age via five allocation scenarios. In each scenario, a hypothetical health planner made a decision to fund one of (...) two programmes identical except for average patient age (35 vs 65 years). Half of the respondents (intervention group) were randomly assigned to receive an additional moral reasoning exercise. Responses were elicited again 7 weeks later. Numerical scores ranging from –5 (strongest preference for younger patients) to +5 (strongest preference for older patients); 0 indicates no age preference. Response quality was assessed by propensity to choose extreme or neutral values, internal consistency, temporal stability and appeal to prejudicial factors. Results: With the exception of a scenario offering palliative care, respondents preferred offering scarce resources to younger patients in all clinical contexts. This preference for younger patients was weaker in the intervention group. Indicators of response quality favoured the intervention group. Conclusions: Although people generally prefer allocating scarce resources to young patients over older ones, these preferences are significantly reduced when participants are encouraged to reflect carefully on a wide range of moral principles. A moral reasoning exercise is a promising strategy to improve response quality to surveys of healthcare priorities. (shrink)

This study brings together two important literatures together in the one volume. One concerns the role of quality assessments in social policy, especially health policy. The second concerns ethical and social issues raised by prenatal testing for disability. Hitherto, these two literatures have had little contact with each other: few scholars have written about both, or have compared the two domains in a systematic way, while people with disabilities and disability scholars are underrepresented in recent discussion on health policy (...) and quality of assessment. This book turns the perspectives of disability scholars on issues that have largely been the province of health methodology, policy and philosophy, while angling philosophical policy analysis on problems that have largely been the province of disability scholarship. This volume will be sought after by bioethicists, philosophers, and specialists in disability studies and healthcare economics. (shrink)

This paper explores the relationship between disability and quality of life and some of its implications for bioethics and healthcare. It focuses on the neglected perfectionist approach that ties well-being to the flourishing of human nature, which provides the strongest support for the common view of disability as a harm. After critiquing the traditional Aristotelian version of perfectionism, which excludes the disabled from flourishing by prioritizing rationalistic goods, I defend a new version that prioritizes the social capacities of (...) human nature and the goods of personal relationship. This relationship-centered perfectionism is able to accommodate and explain disabled thriving. I also show how these issues have important implications for specific bioethical debates and clinical practices, using a cluster of issues related to Down syndrome as timely illustrations. My goal is to sketch a perfectionist theory that gives a more plausible account of the relationship between disability and well-being, and that provides better practical guidance in cases involving judgments about the quality of disabled lives. (shrink)

Parental refusal of a recommended treatment is not an uncommon scenario in the neonatal intensive care unit. These refusals may be based upon the parents’ perceptions of their child’s projected quality of life. The inherent subjectivity of quality of life assessments, however, can exacerbate disagreement between parents and healthcare providers. We present a case of parental refusal of surgical intervention for necrotizing enterocolitis in an infant with Bartter syndrome and develop an ethical framework in which to consider (...) the appropriateness of parental refusal based upon an infant’s projected quality of life. (shrink)

BackgroundIn the last 2 weeks of January 2021, Portugal was the worst country in the world in incidence of infections and deaths due to COVID-19. As a result, the pressure on the healthcare system increased exponentially, exceeding its capacities and leaving hospitals in near collapse. This scenario caused multiple constraints, particularly for hospital medical staff. Previous studies conducted at different moments during the pandemic reported that COVID-19 has had significant negative impacts on healthcare workers’ psychological health, including stress, (...) anxiety, depression, burnout, post-traumatic stress symptoms, and sleep disturbances. However, there are many uncertainties regarding the professional quality of life of hospital nurses and physicians. To address gaps in previous research on secondary traumatic stress, we focused on healthcare workers working in hospitals affected by a major traumatic event: the third wave of COVID-19.ObjectivesThe aim of the present study was to identify the contribution of personal and work-related contextual variables on professional quality of life of healthcare workers.MethodsCross-sectional study with a web-based questionnaire given to physicians and nurses working in a hospital setting. A total of 853 healthcare professionals participated in the survey assessing professional quality of life compassion satisfaction, secondary traumatic stress, and burnout. Factors of professional quality of life were assessed using regression analysis.ResultsMost of the participants showed moderate or high levels of compassion satisfaction, whereas the majority of them experienced moderate levels of burnout and secondary traumatic stress. The analyzed variables demonstrated no differences between professionals who were directly or not involved in the care of COVID-19 patients. Parental status was found to be a significant factor in compassion satisfaction. Female gender was significantly associated with more susceptibility to secondary traumatization. Factors that may potentially contribute to burnout include years of professional experience and the number of work hours per week.ConclusionThe COVID-19 pandemic has created a new challenge for the healthcare system. Burnout and secondary traumatic stress can lead to medical errors and impact standards of patient care, particularly compromising compassionate care. It is therefore recommended that hospitals develop psychoeducational initiatives to support professionals in dealing with barriers to compassion. (shrink)

Background: Mental healthcare needs person-tailored interventions. Experience Sampling Method (ESM) can provide daily life monitoring of personal experiences. This study aims to operationalize and test a measure of momentary reward-related Quality of Life (rQoL). Intuitively, quality of life improves by spending more time on rewarding experiences. ESM clinical interventions can use this information to coach patients to find a realistic, optimal balance of positive experiences (maximize reward) in daily life. rQoL combines the frequency of engaging in a (...) relevant context (a ‘behavior setting’) with concurrent (positive) affect. High rQoL occurs when the most frequent behavior settings are combined with positive affect or infrequent behavior settings co-occur with low positive affect. Methods: Resampling procedures (Monte Carlo experiments) were applied to assess the reliability of rQoL using various behavior setting definitions under different sampling circumstances, for real or virtual subjects with low-, average- and high contextual variability. Furthermore, resampling was used to assess whether rQoL is a distinct concept from positive affect. Virtual ESM beep datasets were extracted from 1058 valid ESM observations for virtual and real subjects. Results: Behavior settings defined by Who-What contextual information were most informative. Simulations of at least 100 ESM observations are needed for reliable assessment. Virtual ESM beep datasets of a real subject can be defined by Who-What-Where behavior setting combinations. Large sample sizes are necessary for reliable rQoL assessments, except for subjects with low contextual variability. rQoL is distinct from positive affect. Conclusion: rQoL is a feasible concept. Monte Carlo experiments should be used to assess the reliable implementation of an ESM statistic. Future research in ESM should asses the behavior of summary statistics under different sampling situations. This exploration is especially relevant in clinical implementation, where often only small datasets are available. (shrink)

Introduction The major burden of the COVID-19 pandemic has been mainly on healthcare workers (HCWs) and as a result many of them have been afflicted with the disease thus far. -/- Purpose The present study was an effort to investigate Tehran University of Medical Sciences HCWs' experiences of COVID-19 during the pandemic in Tehran, Iran. -/- Methods This study is essentially a conventional qualitative content analysis. Twenty-six HCWs (including 7 physicians, 16 nurses, and 3 physiotherapists) were purposefully selected to (...) participate in the study. The data were collected from April 2020 to January 2021 through semi-structured face-to-face interviews. The interviews were transcribed and then analyzed based on the Graneheim and Lundman method using MAXQDA 12. -/- Results Based on the qualitative content analysis which resulted in 364 initial codes, three themes and eight subthemes were extracted. The extracted themes were “support,” “control,” and “improvement.” -/- Conclusions HCWs are in close contact with COVID-19 patients as part of their professional careers and the provision of quality patient care in times of crises is unattainable unless HCWs enjoy support and their own health is maintained. Making institutional, national, and international preparations for their protection is an obligation. (shrink)

We proposed a model to examine the relationship among different types of weight-related stigmas and their relationship to quality of life. We recruited 430 dyads of elementary school children [mean age = 10.07 years; nboy = 241 ; noverweight = 138 ] and their parents. Parents completed QoL instruments about their children assessing generic QoL and weight-related QoL. Children completed QoL instruments assessing generic QoL and weight-related QoL and stigma scales assessing experienced weight stigma, weight-related self-stigma, and perceived weight (...) stigma. Experienced weight stigma was significantly associated with perceived weight stigma, and in turn, perceived weight stigma was significantly associated with weight-related self-stigma. However, experienced weight stigma was not directly associated with weight-related self-stigma. In addition, experienced stigma was negatively associated with both child-rated and parent-rated QoL. Perceived weight stigma was associated only with parent-rated weight-related QoL but not child-rated QoL. Self-stigma was associated with child-rated QoL but not parent-rated QoL. Moreover, perceived weight stigma and weight-related self-stigma were significant mediators in the association between body weight and children's QoL; experienced weight stigma was not a significant mediator. The study findings can be used to inform healthcare providers about the relationship among different types of stigmas and their influence on child-rated and parent-rated QoL and help them develop interventions to address the global trend of overweight/obesity in youth and pediatric populations. (shrink)

AimBased on the Theory of Reasoned Action, we examined whether attitudes of nurses from different ethnic groups, subjective norms, behavioral intentions, assessments of relationships and communication were associated with their perceptions of the quality of perinatal care provided to lesbian women.BackgroundNurses administer healthcare, provide pertinent information and consultation to lesbians from pregnancy planning through birth.IntroductionDuring the past few decades, worldwide, there has been a rise in lesbian-parenting. Despite the changes in Israeli society’s public and legal reality, intolerance and (...) discrimination to the homosexual population is still prevalent in Israel’s healthcare system.MethodsA cross-sectional study conducted between 12/2015-4/2016. Of the 270 nurses approached, 184 completed a self-report anonymous questionnaire.FindingsThis is an important and timely study reflecting nurses’ perceptions of the quality of perinatal care provided to lesbians. The study findings reflect that attitudes, subjective norms, behavioral intentions, assessments of relationships and communication of nurses from different ethnic groups are associated with their perceptions of the quality of perinatal care provided to the lesbians. The hierarchical regression analysis demonstrated that attitudes, subjective norms, behavioral intentions, assessments of relationships and communication of nurses contributed 56% to the variance of nurses’ perception of their own quality of perinatal care.DiscussionTRA conceptualization predicted the quality of care of nurses from different ethnic groups treating lesbians in a perinatal setting.ConclusionTRA provides a useful framework for understanding and predicting the motivational effect of health care personnel with the lesbian population, being at risk for stigmatization and receiving less quality perinatal care.Implications for nursing and heath policyOur findings revealed the importance of formulating a recognized policy in the field of LGBT medicine at the national level. Further training of nurses as to the lesbians’ unique health needs, might improve the nurses’ relationships and communication as well as the quality of perinatal nursing care. (shrink)

It is generally accepted that morally justified healthcare rationing must be non-discriminatory and cost-effective. However, given conventional concepts of cost-effectiveness, resources spent on disabled people are spent less cost-effectively, ceteris paribus, than resources spent on non-disabled people. Thus, it is reasonable to assume that standard cost-effectiveness discriminates against the disabled. Call this thedisability discrimination problem.Part of the disability discrimination involved in cost-effectiveness stems from the way in which health-related quality of life is accounted for and measured. This paper (...) offers and defends a patient-sensitive account of health-related quality of life, which can effectively make cost-effectiveness less discriminatory against the disabled and thus more morally justified. (shrink)

Background: The brief generic Multicultural Quality of Life Index is a culturally informed self-report 10-item questionnaire used to measure health-related quality of life. QoL is an important outcome measure in guiding healthcare and is held as a substantial parameter to evaluate the effectiveness of healthcare. Attention Deficit Hyperactivity Disorder in children might negatively influence the parents’ QoL. Having a validated questionnaire to measure QoL for this population will therefore be a vital first step in guiding (...) class='Hi'>healthcare for parents of children with ADHD. We aimed to examine the reliability and validity of the Norwegian version of the MQLI in a sample of parents of children with ADHD.Methods: In a cross-sectional study, 128 parents of children with ADHD were recruited from four outpatient clinics within the Child and Adolescents Mental Health Services in Norway. They completed the MQLI along with an alternative well-being scale, the Five-item World Health Organization Well-being Index, and a form including demographic variables. Reliability and validity of the MQLI were examined. We conducted a factor analysis and calculated internal consistency and the correlation between the MQLI and the WHO-5.Results: Factor analysis of the parents reported MQLI yielded a one-factor solution. For the MQLI, Cronbach’s alpha was 0.73. The correlation between the two measures of MQLI and WHO-5 was high, reflecting convergent validity since the association between the two measures was strong.Conclusion: Results from this study support the reliability and validity of the Norwegian version of the MQLI for assessment of quality of life in parents of children with ADHD with good psychometric properties. Study findings support the use of the questionnaire in CAMHS. (shrink)

BackgroundThe quality of ethics consults is notoriously difficult to measure. Survey-based assessments cannot capture nuances of consultations. To address this gap, we conducted interviews with health professionals who requested ethics consults during the initial phase of the COVID-19 pandemic.MethodHealthcare professionals requesting ethics consultation between March 2020 and May 2020 at a tertiary academic medical centre were eligible to participate. We asked participants to comment on the consults they called and thematically analysed responses to identify features associated with optimal (...) class='Hi'>quality consultations.ResultsOf 14 healthcare providers, 8 (57%) were women and professions were as follows: 11 (79%) medical doctors, 1 (7%) social worker, 1 (7%) physician assistant and 1 (7%) nurse practitioner. Two aspects of quality emerged: satisfaction and value. Themes within the domain of satisfaction included: responsiveness of the ethics consultant, willingness to consult, institutional role of the ethics service and identifying areas for improvement. When describing value, respondents spoke of the intrapersonal and interpersonal worth of consultation.ConclusionParticipants were generally satisfied with ethics consultation services, similar to opinions of those found in pre-COVID-19 survey studies. Our qualitative approach allowed for a richer exploration of the value of ethics consultation during the pandemic and has implications for ethics consultation services more broadly. Ethics consultation—emphasising both the process and outcome—created valuable moral spaces, promoting thoughtful and ethical responses to dilemmas in patient care. Future assessments should incorporate patient and family/surrogate perspectives and explore the domain of education as an additional quality measure. (shrink)

BackgroundThe issue of stigma is very important in the battle against HIV/aids in Africa since it may affect patient attendance at healthcare centres for obtaining antiretroviral medications and regular medical check-ups. Stigmatization creates an unnecessary culture of secrecy and silence based on ignorance and fear of victimization. This study was designed to determine if there is external stigmatization of people living with HIV and AIDS by health care workers at a tertiary hospital in KwaZulu-Natal province, South Africa. The study (...) investigated the impact of knowledge of HIV/aids by HCWs on treatment of patients, as well as the comfort level and attitude of HCWs when rendering care to PLWHA.MethodsA descriptive cross sectional study was designed to collect data using an anonymous self-administered structured questionnaire from 334 HCWs. The study was conducted in clinical departments of a large multidisciplinary 922-bed tertiary care teaching hospital in Durban, KZN.ResultsOverall HCWs had an above average knowledge about HIV/aids although some gaps in knowledge were identified. Tests of statistical significance showed that there was association between level of education and knowledge of HIV/aids ; occupation and knowledge of HIV/aids ; and gender and knowledge of HIV/aids. Test for comfort level was only significant for gender, with males showing more comfort and empathy when dealing with PLWHA. The study also revealed that patients were sometimes tested for HIV without informed consent before surgery, due to fear of being infected, and there was some gossiping about patients' HIV status by HCWs, thereby compromising patient confidentiality. The majority of HCWs showed a willingness to report incidents of stigmatization and discrimination to higher authorities, for better monitoring and control.ConclusionsAlthough knowledge, attitude and comfort level of HCWs taking care of PLWHA was above average, enforcement of existing antidiscrimination laws and continuing education in medical ethics and healthcare law, would greatly improve the performance of HCWs taking care of PLWHAs. More psychological support and counselling should be provided to HCWs, to further reduce the impact of stigmatization and discrimination against PLWHA. (shrink)

The need for innovative development of healthcare institutions is determined by the necessity to increase the efficiency of organizational processes based on the formation of new models of cooperation, which will make it possible to get access to new technologies and knowledge. The goal of the study is to determine the parameters of the impact of innovative open cooperation strategy and the strategy of innovative closed cooperation of healthcare institutions on the effectiveness of their organizational structure in the (...) context of dissemination and the use of knowledge. Simulation modeling was applied to generate the most effective organizational management structure in the context of innovative cooperation and knowledge exchange within the organizational processes “Inside-out” and “Inside-in”. It is substantiated that the strategies of innovative cooperation “Open Innovation/Closed Innovation” have a significant impact on the organizational structure of management of healthcare institutions in terms of the “degree of centralization” (Dci), “degree of mediation” (Dii), and “degree of centralization of powers” (Dpi). The values of the selected criteria range from 25,52% to 61,50% in the case of Dii, and from 34,53% to 52,63% in the case of Dci, which indicates a higher efficiency of organizational knowledge exchange processes in healthcare institutions, which adhere to the Open Innovation strategy of innovative cooperation. Therefore, there are significant differences in the effectiveness of the management’s organizational structure depending on the degree of openness of innovative cooperation of healthcare institutions. The strategy of innovative openness allows increasing the number and quality of connections in the context of knowledge exchange between the subjects (actors, agents) of the organizational structure (in a broad sense, considering internal and external levels of externality) of healthcare institutions, regardless of the distance between them and the level of similarity. (shrink)

Bioethics is gradually becoming an important part of the drive to increase quality healthcare delivery in sub‐Saharan African countries. Yet many healthcare service‐users in Africa are familiar with incidences of questionable health policies and poor healthcare delivery, leading to severe consequences for patients. We argue that the overarching rights‐based ethical administrative framework recently employed by healthcare authorities contributes to the poor uptake and enforcement of current normative tools. Taking Ghana as a case study, we focus (...) on the cultural ethical context and we tease out the concepts of the good and the ethical among the Akan and Bulsa ethnic groups. We point out three tenets towards building a normative framework that can resonate with service‐users and practitioners: ontological communitarianism; empathic humanism; and virtuous character. Finally, we indicate how these core tenets can be dovetailed into building an effective normative framework and into the training of healthcare providers. (shrink)

Following an initial study of the needs of healthcare providers (HCP) regarding the introduction of Medical Assistance in Dying (MAiD), and the subsequent development of an assisted dying program, this study sought to determine the efficacy and impact of MAiD services following the first two years of implementation. The first of three aims of this research was to understand if the needs, concerns and hopes of stakeholders related to patient requests for MAiD were addressed appropriately. Assessing how HCPs and (...) families perceived the quality of MAiD services, and determining if the program successfully accommodated the diverse needs and perspectives of HCPs, rounded out this quality evaluation. This research implemented a mixed-methods design incorporative of an online survey with Likert scale and open-ended questions, as well as focus groups and interviews with staff and physicians, and interviews with MAiD-involved family members. There were 356 online surveys, as well as 39 participants in six focus groups with HCP, as well as fourteen interviews with MAiD-involved family members. Participants indicated that high-quality MAiD care could only be provided with enabling resources such as policies and guidelines to ensure safe, evidence-based, standardized care, as well as a specialized, trained MAiD team. Both focus group and survey data from HCPs suggest the infrastructure developed by the hospital was effective in delivering high-quality MAiD care that supports the diverse needs of various stakeholders. This study may serve as a model for evaluating the impact and quality of services when novel and ethically-contentious clinical practices are introduced to healthcare organizations. (shrink)

Patients rely on, benefit from, and are strongly influenced by physicians’ recommendations. In spite of the centrality and importance of physicians’ recommendations to clinical care, there is only a scant literature describing the conceptual process of forming a clinical recommendation, and no discrete professional standards for making individual clinical recommendations. Evidence-based medicine and shared decision making together are intended to improve medical decision making, but there has been limited attention to how a recommendation is discretely formulated from either of those (...) processes or how patients’ preferences ought to be considered and how much weight they should hold. Moreover, physicians’ bias has been reported to strongly influence how a recommendation is derived, thereby undermining the quality of healthcare decisions and patients’ trust. To demonstrate a potential for improving the quality of decisions, this article proposes a conceptual framework for how physicians should reach a clinical recommendation and apply the process in practice. For preference-sensitive clinical decisions—that is, clinical decisions when patients’ values and preferences are relevant—the process for reaching a recommendation should be transparent to patients and should be based solely on the medical evidence and patients’ values and preferences. When patients’ preferences for care do not prioritize health, physicians decide whether their recommendation will prioritize a welfare-enhancing versus an autonomy-enhancing approach. When there are gaps in understanding how physicians derive their clinical recommendations and how to further improve the quality of the decisions, the author calls for further empiric research. (shrink)

Defining quality of life is a difficult task as it is a subjective and personal experience. However, for the elderly, this definition is necessary for making complicated healthcare-related decisions. Commonly these decisions compare independence against safety or longevity against comfort. These choices are often not made in isolation, but with the help of a healthcare team. When the patient’s concept of quality of life is miscommunicated, there is a risk of harm to the patient whose best (...) interests are not well understood. In order to bridge this gap in understanding and unite seniors with their caretakers as a cohesive team, we need to establish a definition of quality of life. In this paper, my personal experiences with the elderly will be analysed along with five essays on the topic of ageing. These sources provide clear evidence that quality of life for seniors is majorly determined by the ability to preserve one’s lifelong identity. When making difficult decisions in geriatric healthcare, this greater understanding of the determinants of life quality will allow treatments to best serve the elderly. Defining quality of life allows healthcare providers to shift the focus from minimising disability toward maximising ability. I believe this shift would provide seniors with better health outcomes and properly enhance the quality of their years. (shrink)

Background:Organ donation and transplantation have made it possible to both save life and to improve the quality of life for a large number of patients. In the last years there has been an increasing gap between the number of patients who need organs and organs available for transplantation, and the focus worldwide has been on how to meet the organ shortage. This also rises some ethical challenges.Objective:The objective of this study was to explore healthcare professionals' experience of ethics (...) related to care and interaction with critically ill patients with severe brain injuries and their families.Research design:A hermeneutic phenomenological approach was used to explore the participants' experiences. Methods for collecting data were a combination of participant observations and in-depth interviews.Participants and research context:Two ICUs in a Norwegian university hospital were recruited for data collection. A total of 12 cases were observed, and 32 of the healthcare professionals involved were interviewed.Ethical considerations:The study was approved by the Regional Committee for Research Ethics. Permission to the study in the ICUs was obtained from the Chief Physician in the two ICUs respectively. The right of the participants was ensured by written, voluntary, and informed consent.Findings:From the thematic analysis, a structure of the participants' experiences emerged as a process. While the patients' condition was clarified through phases of prognostic ambiguity, gradual clarification and prognostic certainty, interaction with the families was characterized by ambiguity that involved withholding. The prognostic process had a great impact on how the healthcare professionals interacted with the family. The interaction challenged the participants' caring values in various ways and captured an important structure in their experiences of the ethical interaction with the patients' families. These challenges distinguish caring for families in donation situations from caring for relatives of critically ill patients in general.Discussion:In the discussion we have illuminated how professional ethics may be threatened by more pragmatic and utilitarian arguments contained in regulations and transplant act.Conclusion:Ethical questions should be discussed more both in educations of healthcare professionals and in clinical practice. (shrink)

Shocking. There seems no other response to the Fox findings. The bioethics community has been working for decades to improve the quality of, and access to, competent healthcare ethics consultation....

The Ethics Consultation Quality Assessment Tool (ECQAT) establishes standards by which the quality of ethics consultation records (ECRs) can be assessed. These standards relate to the ethics question, consultation-specific information, ethical analysis, and recommendations and/or conclusions, and result in a score associated with one of four levels of ethics consultation quality. For the ECQAT to be useful in assessing and improving the quality of healthcare ethics consultations, individuals who rate the quality of ECRs need (...) to be able to reliably use the tool.We developed a short course to train ethics consultants in using the ECQAT, and evaluated whether the participants (1) achieved an acceptable level of calibration in matching expert-established quality scores for a set of ethics consultations, and (2) were satisfied with the course. We recruited 28 ethics consultants to participate in a virtual, six-session course. At each session participants and faculty reviewed, rated, and discussed one to two ECRs. The participants’ calibration in matching expert-established quality scores improved with repeated exposure at all levels of ethics consultation quality. Participants were generally more accurate when assessing consultation quality at the dichotomous level of “acceptable” (scores of three or four) versus “unacceptable” (scores of one or two) than they were with a more specific score. Participants had higher rates of accuracy with the extreme ratings of “strong” (level four) or “poor” (level one). Although participants were highly satisfied with the course, only a minority of participants achieved the prespecified acceptable level of calibration (that is, 80 percent or greater accuracy between their score and expert-established scores). These results suggest that ECQAT training may require more sessions or need modification in the protocol to achieve higher reliability in scoring. Such trainings are an important next step in ensuring that the ECQAT is a tool that can be used to promote improvement in ethics consultation quality. (shrink)

Ellen Fox and collaborators have produced the most detailed description of healthcare ethics practices in the United States available. Some findings are shocking for anyone committed to promoting q...

Background:Many nursing homes appear as multicultural workplaces where the majority of healthcare providers have an ethnic minority background. This environment creates challenges linked to communication, interaction and cultural differences. Furthermore, the healthcare providers have varied experiences and understanding of what quality care of patients with dementia involves.Purpose:The aim of this study is to illuminate multi-ethnic healthcare providers’ lived experiences of their own working relationship, and its importance to quality care for people with dementia.Research design:The study (...) is part of a greater participatory action research project: ‘Hospice values in the care for persons with dementia’. The data material consists of extensive notes from seminars, project meetings and dialogue-based teaching. The text material was subjected to phenomenological-hermeneutical interpretation.Participants and research context:Participants in the project were healthcare providers working in a nursing home unit. The participants came from 15 different countries, had different formal qualifications, varied backgrounds and ethnic origins.Ethical considerations:The study is approved by the Norwegian Regional Ethics Committee and the Norwegian Social Science Data Services.Findings:The results show that good working relationships, characterized by understanding each other’s vulnerability and willingness to learn from each other through shared experiences, are prerequisites for quality care. The healthcare providers further described ethical challenges as uncertainty and different understandings.Discussion:The results are discussed in the light of Lögstrup’s relational philosophy of ethics and the concepts of vulnerability, ethic responsibility, trust and openness of speech.Conclusion:The prerequisite for quality care for persons with dementia in a multicultural working environment is to create arenas for open discussions between the healthcare providers. Leadership is of great importance. (shrink)

Today, health systems around the world are under pressure to create greater value for patients and society [81, p. 1, 119]; increasing access, improving client orientation and responsiveness, reducing medical errors and safety, restraining utilization via managed care, and implementing priority allocation of resources for high-burden health problems are examples of strategies towards this end. The quality paradigm by virtue of its strategic consumer focus and its methods for achieving operational excellence has proved an effective approach for creating higher (...) value in many sectors. If applied in a deliberate and holistic manner, the quality paradigm can bring about a more cost-effective organization of the health systems. In this article, we apply quality concepts to healthcare in a conceptual format; we characterize the health system’s customers and outputs with their quality dimensions. The product of this effort is a blueprint for a customer-driven health system which identifies six types of customers, nine types of outputs and the associated operations. As a preliminary step, a new analysis and definition of health and disease is provided. Rethinking the structure of health system in this manner and the related conceptual model can guide medical research, health sciences education, and health services policy, and help the practitioner to integrate all modern trends in healthcare delivery. (shrink)

A goal of living as well as possible is central to practice and research with young adults living with home mechanical ventilation (HMV). Significant effort has been put into conceptualizing and measuring the quality of life (QOL) as a proxy for living well. Yet, dominant understandings of QOL have been influenced by normative, ableist, and biomedical discourses about what constitutes a good life that, when applied in practice and systems with those living with HMV, can contribute to exclusion and (...) constrain opportunities to live well. Inquiry into what certain understandings of living well can do is critical to opening up possibilities to reimagine living well with HMV. This paper draws on findings from a critical narrative inquiry that explored the experiences of five young adults (ages 18–40 years) living with HMV. Data were co‐constructed virtually through an initial interview and photo‐elicitation using participant‐generated photographs. A critical narrative analysis of participants' stories made visible the ideological effects of ableist, biomedical, and individualist discourses and how the young adults reproduced and resisted these dominant discourses. Their stories further opened up possibilities for nurses and other healthcare providers to see living well and QOL differently. (shrink)

Prevention and control of chronic conditions are global healthcare challenges. Patient self-management has been deemed essential for treating chronic conditions and improving the quality of patient life. However, the current Japanese system for supporting patient self-management of chronic conditions has received little ethical assessment. The first aim of this article is to provide an ethical analysis of current Japanese support for self-management of chronic conditions with reference to international discussions concerning self-management, developed mainly in western societies such as (...) Europe, the United States. The second aim is to clarify the challenges faced by Japanese biomedical ethics concerning selfmanagement support by focusing on the ethical concepts of quality of life and autonomy. This article identifies the following two challenges: [1] dispelling conceptual confusion concerning basic ethical concepts such as quality of life and autonomy, and [2] exploring the conceptual relationship between these ethical concepts, as they relate to providing support for chronically ill patients. By addressing these challenges and constructing a theoretical basis for radical change in support mechanisms, bioethics in Japan could contribute to efforts to construct a comprehensive support system for patients with chronic conditions, which organize variety kinds of supports, such as medical professional supports, supports from patient’s groups, local community supports, familial supports, support in patients’ workplace, and supports for patients’ family members as well. (shrink)

Our national Minister of Health, Dr Aaron Motsoaledi, described publicly the challenges facing our healthcare system and discussed the national and provincial measures that are being implemented to allow all South Africans to obtain quality healthcare. One would then certainly argue that the issue of quality healthcare has been debated to its ultimate exhaustion, but at what point do we begin to be silent about pertinent issues, especially those affecting the livelihood of a whole nation? (...) This paper addresses many of the issues highlighted above; it attempts to define what quality healthcare is, in the South African context, and its relationship to the branch of bioethics. It cites current views on ethics and rights in healthcare and the role of individuals and healthcare professionals in improving the provision of healthcare in our country. (shrink)

This study aimed to determine the relationship between acute stress and quality of life and explore their influencing factors on health care workers. A descriptive cross-sectional study was conducted, and a sample of 525 health care workers was recruited from 15 hospitals through a convenient sampling method. Participants completed an online self-report questionnaire to assess their acute stress and quality of life. Descriptive and multiple linear regression statistics were used for this analysis. The results regarding acute stress responses (...) varied significantly among the differences in marital status, physical activity, work status, perceived risk of contracting COVID-19, and the expected duration of the pandemic. Moreover, a younger age, lack of physical activity, being a front-line medical staff, and higher acute stress scores indicated a worse quality of life. Healthcare workers’ acute stress was negatively correlated with their quality of life. Therefore, the authorities should pay special attention to health care workers’ mental health and provide them with timely protection during the pandemic. (shrink)