Proposals for health care cost containment emphasize high-value care as a way to control spending without compromising quality. When used in this context, ‘value’ refers to outcomes in relation to cost. To determine where health spending yields the most value, it is necessary to compare the benefits provided by different treatments. While many studies focus narrowly on health gains in assessing value, the notion of benefit is sometimes broadened to include overall quality of life. This paper (...) explores the implications of using subjective quality of life measures for value assessment. This approach is claimed to be more respectful of patients and better capture the perspectival nature of quality of life. Even if this is correct, though, subjective measurement also raises challenging issues of interpersonal comparability when used to study health outcomes. Because such measures do not readily distinguish benefits due to medical interventions from benefits due to personal or other factors, they are not easily applied to the assessment of treatment value. I argue that when the outcome of interest in value assessment is broadened to include quality of life, the cost side of these measures should also be broadened. I show how one philosophical theory of well-being, Jason Raibley’s “agential flourishing” theory, can be adapted for use in quality of life research to better fit the needs and aims of value assessment in health care. Finally, I briefly note some implications of this argument for debates about fairness in health care allocations. (shrink)

Background: The quality of patient care is effective for new privatized healthcare system. For providing the effective services to the patients’ technology tools play important role. Also, new privatized healthcare organizations introduce the healthcare insurance. The aim of current systematic review is to explore the quality of patient care with new privatized healthcare system in the context of technology integration and health insurance. Method: A thorough search of databases, including Scopus, PsycINFO, and Web of Science, was (...) conducted in order to categorize relevant research that was published between 2020 and 2024. The inclusion criteria for this research were English-language papers that focused on exploring the quality of patient care with new privatized healthcare system in the context of technology integration and health insurance.Following an initial screening and quality evaluation, eleven studies were included in the synthesis. Results: The study database was searched through electronic databases, identifying 1679 records. 15 unique records were assessed for eligibility based on titles and abstracts. After initial screening, 11 studies were selected for full-text assessment. After independent review, 11 studies met criteria and were included in the systematic review. The selected studies were conducted between 2020-2024 and varied in design. The PRISMA flowchart illustrates the selection process. Quality evaluation involves peer-reviewed journals, overall assessment, and quality management. Conclusion: As the SR concluded that advanced technologies like electronic health records, telemedicine, and predictive analytics can improve patient care and treatment accuracy. However, challenges like rising costs, complex insurance plans, and data security need to be addressed. Effective training for healthcare providers, clear insurance plans, and robust information security systems are crucial for maximizing profits. (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)

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)

A remarkable surge in efforts to assess the quality of life of patients has occurred in recent years in medical research. Philosophical discussions of these developments have focused, on the one hand, on epistemological reservations about the plausibility of measuring quality of life and, on the other hand, on moral and ethical qualms about the meaning of life conveyed in such assessments. Whilst providing an important note of caution, such critiques fail to recognise two basic principles of (...) class='Hi'>quality of life in medical research. Firstly it is intended to provide understanding about groups and categories of patients rather than individuals. Secondly the purpose of such research is to produce generalisations about the relative costs and benefits of specific health care interventions rather than absolute judgements regarding the quality of life of patients per se. Selecting a good quality of life measure for a clinical trial requires balancing criteria such as validity with practical feasibility. Such measures will play an increasingly central role in providing research evidence to improve health care. (shrink)

Background: This systematic review explores a diverse range of international and indigenous healthcare research studies, spanning topics from diabetes management to cardiovascular care. The synthesis aims to identify overarching themes, sub-themes, and emerging trends in healthcare practices, emphasizing the integration of digital technologies and advancements in nutrition therapy. Aim: The primary objective is to provide a comprehensive overview of healthcare literature, combining international and indigenous perspectives, to uncover commonalities and distinctions in approaches to patient care, treatment modalities, and (...) research methodologies. Method: A systematic and thorough review of 20 selected studies, encompassing international and Saudi Arabian research, was conducted. The studies, published between 2020 and 2024, were analyzed for their key themes, sub-themes, and trends, creating a detailed understanding of the current landscape of healthcare practices. Results: The synthesis revealed recurring themes, including the integration of digital technologies in diabetes care, advancements in medical nutrition therapy for obesity management, dynamic risk assessment in atrial fibrillation, and the potential of genetically modified food for nutritional security in Saudi Arabia. Sub-themes elucidated nuanced aspects of these overarching themes, offering a holistic perspective on contemporary healthcare strategies. Conclusion: International and indigenous research studies collectively underscore the importance of collaborative and context-specific approaches to healthcare. While global insights contribute to a broader understanding, indigenous studies emphasize the necessity of tailoring interventions to local needs. The synthesis not only highlights current achievements in healthcare but also identifies areas for further exploration and improvement. (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)

Objective The establishment of patient-centered measures capable of empirically determining meaningful cognitive change after surgery can significantly improve the medical care of epilepsy patients. Thus, this study aimed to develop reliable change indices (RCIs) and standardized regression-based (SRB) change norms for a comprehensive neuropsychological test battery in the German language. Methods Forty-seven consecutive patients with temporal lobe epilepsy underwent neuropsychological assessments, both before and 12 months after surgery. Practice-effect-adjusted RCIs and SRB change norms for each test score were computed. (...) To assess their usefulness, the presented methods were applied to a clinical sample, and binary logistic regression analyses were conducted to model the odds of achieving improvement in quality of life (QOL) after surgery. Results The determined RCIs at 90% confidence intervals and the SRB equations for each test score included in the test battery are provided. Cohen’s kappa analyses revealed a moderate mean agreement between the two measures, varying from slight to almost perfect agreement across test scores. Using these measures, a negative association between improvement in QOL and decline in verbal memory functions after surgery was detected (adjusted odds ratio = 0.09, p = 0.006). Significance To the best of our knowledge, this study is the first to develop RCIs and SRB change norms necessary for the objective determination of neuropsychological change in a comprehensive test battery in the German language, facilitating the individual monitoring of improvement and decline in each patients’ cognitive functioning and psychosocial situations after epilepsy surgery. The application of the described measures revealed a strong negative association between improvement in QOL and decline in verbal memory functions after surgery. (shrink)

Quality of nursing cannot be assessed in terms of performance referenced criteria, but only in terms of the personal qualities displayed in the performance. The key to improvement in practice may be the improvement of emotional and motivational tendencies. In essence, professional development implies personal development. Harré makes a distinction between ‘powers to do’ and ‘powers to be’ (a state of being). The former are the capacities that individuals acquire to perform their tasks and roles. Professional development therefore involves, (...) first, the acquisition of the capacities necessary for the successful completion of a set of professional tasks (the powers to do). Secondly, it involves the acquisition of the appropriate emotions and motivations, and the theories about human nature and the conduct that underpins them (the powers to be). Therefore, these capacities cannot be derived from an analysis of tasks, since what are defined as tasks in the first place are determined by the exercise of such powers. The acquisition of attitudes constitutes a source of competent practice. Harré’s model of ‘personal identity’ provides a conceptual framework for thinking about the process of the acquisition of nursing competence and its relationship to differing views of nursing. Considerations relating to different priorities within Harré’s model make it possible to raise questions about the objectives of competence at different stages. (shrink)

Although ethics consultation is offered as a clinical service in most hospitals in the United States, few valid and practical tools are available to evaluate, ensure, and improve ethics consultation quality. The quality of ethics consultation is important because poor quality ethics consultation can result in ethically inappropriate outcomes for patients, other stakeholders, or the health care system. To promote accountability for the quality of ethics consultation, we developed the Ethics Consultation Quality Assessment (...) Tool. ECQAT enables raters to assess the quality of ethics consultations based on the written record. Through rigorous development and preliminary testing, we identified key elements of a quality ethics consultation, established scoring criteria, developed training guidelines, and designed a holistic assessment process. This article describes the development of the ECQAT,.. (shrink)

Background: The development of the COVID-19 pandemic has prompted the implementation of many procedures to safeguard against further increases in illness. Unfortunately, this has drastically reduced residents’ contact with their families, which has increased feelings of loneliness and isolation. This is particularly difficult in long-term care facilities, where the risk of developing depression is higher than in the general population.Objectives: The aim of the study was to assess the risk of depression among the residents of long-term care institutions (...) in Poland during the COVID-19 pandemic and to determine the relationship between the risk of depression and the occurrence of cognitive impairment in the study group.Methods: The study included 273 residents from long-term care institutions in Poland. The risk of depression was determined based on an originally designed questionnaire. The cognitive state of the subjects was assessed using the screening test Mini-Mental State Examination. Both the depression risk assessment and the MMSE test were conducted twice: in March and December 2020.Results: In March, severe dementia was present in 28.2% of the residents and normal MMSE scores were observed in 16.1% of the subjects; in December, the prevalence of severe dementia increased to 31.1% and that of normal scores decreased to 10.3%. In March, no participant was found to be at high risk of depression and moderate risk was observed in 14.3% of the subjects; in December, 2.6% of the residents had a high risk score and 45.4% had a moderate risk score. Statistical analysis revealed that higher MMSE scores correspond with a higher risk of depression.Conclusion: A higher risk of depression was observed with the development of the pandemic. Residents with cognitive impairment were characterised by a lower risk of depression compared to individuals with normal MMSE scores. During the study, progression of cognitive impairment was observed in the residents. (shrink)

BackgroundSarcomas are a diverse group of neoplasms that vary greatly in clinical presentation and responsiveness to treatment. Given the differences in the sites of involvement, rarity, and treatment modality, a multidisciplinary approach is required. Previous literature suggests patients with sarcoma suffer from poorer quality of life especially physical and functional wellbeing. Adolescent and young adult patients are an underrepresented population in cancer research and have differing factors influencing QoL.MethodsRetrospective analysis of Young Adult patients enrolled in the Sarcoma Tissue Repository (...) at University of Iowa. QoL was assessed using the self-report FACT-G questionnaire at enrollment and 12 months post-diagnosis; overall scores and the 4 wellbeing subscales were calculated. Linear mixed effects models were used to measure the association between the rate of change in FACT-G subscale scores and baseline clinical, comorbidity, and treatment characteristics.Results49 patients were identified. 57.1% of patients had a malignancy involving an extremity. Mean FACT-G scores of overall wellbeing improved from baseline to 12 months. Social and emotional wellbeing did not differ significantly between baseline and 12 months. Physical wellbeing and functional wellbeing scores improved from baseline to 12 months. No difference was seen for FACT-G overall scores for age, sex, laterality, marital status, performance status, having children, clinical stage, limb surgery, chemotherapy, or tumor size. A difference was demonstrated in physical wellbeing scores for patients with baseline limitation compared to those with no baseline limitation. A difference was demonstrated in social wellbeing based on anatomical site.ConclusionYoung adults with sarcoma treated at a tertiary center had improvements in overall reported QoL at 12 months from diagnosis. Overall baseline QoL scores on FACT-G were lower than the general adult population for YA patients with sarcoma but at 12 months became in line with general population norms. The improvements seen merit further investigation to evaluate how these change over the continuum of care. Quality of life changes may be useful outcomes of interest in sarcoma trials. (shrink)

In this paper, we argue that ‘good care’ in residential nursing homes is enacted through different care practices that are either inspired by a ‘professional logic of care’ that aims for justice and non-maleficence in the professional treatment of residents, or by a ‘relational logic of care’, which attends to the relational quality and the meaning of interpersonal connectedness in people’s lives. Rather than favoring one care logic over the other, this paper indicates how (...) important aspects of care are constantly negotiated between different care practices. Based on the intricate everyday negotiations observed during an ethnographic field study at an elderly nursing home in Germany, the paper puts forth the argument that care is always a matter of tinkering with different, sometimes competing ‘goods’. This tinkering process, which unfolds through ‘intuitive deliberation’, ‘situated assessment’ and ‘affective juggling’ is then theorized along the conceptualization of a ‘practical ethics of care’: an ethics which makes no a priori judgments of what may be considered as good or bad care, but instead calls for momentary judgments that are pliable across changing situations. (shrink)

PurposeContinuous patient-reported outcomes to identify and address patients’ needs represent an important addition to current routine care. The aim of this study was to identify and determine important dimensions of health-related quality of life in routine oncological care.MethodsIn a cross-sectional qualitative study, interviews and focus groups were carried out and recorded. The interviewees were asked for their evaluation on HrQoL in general and specifically regarding cancer treatment. The material was transcribed and analyzed using qualitative content analysis based (...) on Mayring. The results were reviewed in an expert discussion.ResultsInterviews with patients and clinicians, as well as five focus groups with clinicians were conducted. Initially, nine deductive and two inductive categories on HrQoL were built. Four categories were excluded following the qualitative content analysis because they were hardly or not at all mentioned by participants. Following on from the analysis of the expert discussion, one dimension was added, and two further categories were excluded. The resulting system consisted of six dimensions: emotional health, physical ailments, autonomy, social functionality, dignity, and resources.ConclusionThe identified dimensions of HrQoL in routine oncological care were found to differ from those used in existing HrQoL measurements for patients. Further research is needed to test and evaluate the presented structure in a larger sample of cancer patients to further assess its psychometric properties. (shrink)

BackgroundIn the 1970s, the Federal Trade Commission declared that allowing medical providers to advertise directly to consumers would be “providing the public with truthful information about the price, quality or other aspects of their service.” However, our understanding of the advertising content is highly limited.ObjectiveTo assess whether direct-to-consumer medical service advertisements provide relevant information on access, quality and cost of care, a content analysis was conducted.MethodTelevision and online advertisements for medical services directly targeting consumers were collected in (...) two major urban centres in Nevada, USA, identifying 313 television advertisements and 200 non-duplicate online advertisements.ResultsBoth television and online advertisements reliably conveyed information about the services provided and how to make an appointment. At the same time, less than half of the advertisements featured insurance information and hours of operation and less than a quarter of them contained information regarding the quality and price of care. The claims of quality were substantiated in even fewer advertisements. The scarcity of quality and cost information was more severe in television advertisements.ConclusionThere is little evidence that medical service advertising, in its current form, would contribute to lower prices or improved quality of care by providing valuable information to consumers. (shrink)

End-of-life medical decision making presents a major challenge to patients and physicians alike. In order to determine whether it is ethically justifiable to forgo medical treatment in such scenarios, clinical data must be interpreted alongside patient values, as well as in light of the physician's ethical commitments. Though much has been written about this ethical issue from religious perspectives , little work has been done from an Islamic point of view. To fill the gap in the literature around Islamic bioethical (...) perspectives on the matter, we derive a theologically rooted rubric for goals of care. We use the Islamic obligation for Muslims to seek medical treatment as the foundation for determining the clinical conditions under which Muslim physicians have a duty to treat. We next link the theological concept of accountability before God to quality-of-life assessment. Using this construct, we suggest that a Muslim physician is not obligated to maintain or conti.. (shrink)

ContextPeople with mental disorders can acquire long-term disabilities, which could impair their functioning and quality of life (QoL), requiring permanent care and social support. Systematic data on QoL and functioning, which could support a better management of these people, were not available.ObjectiveTo analyze the QoL, level of functioning and their association with sociodemographic and clinical factors of people with mental disorders who underwent deinstitutionalization using assisted living facilities.MethodsA Cross-sectional study was conducted between July 2018 and July 2019, through (...) interviews using the World Health Organization Quality of Life (WHOQOL-BREF) to determine the QoL scores, and the World Health Organization Disability Assessment Schedule (WHODAS 2.0) to determine the level of functioning. All adults (≥18 years old) with mental disorders, who underwent deinstitutionalization, users of assisted living facilities and assisted by the Psychosocial Assistance Centers III, in a city in the state of São Paulo, Brazil, were selected. For statistical analysis of the associated factors, Student’st-test was used for dichotomous variables and ANOVA for polynomial variables. Pearson correlation coefficient was used to measure the association between QoL and functioning scores.ResultsOut of 359 people who underwent deinstitutionalization with mental disorders, 147 met the eligibility criteria. The mean total score for the WHOQOL-BREF was 66.5 ± 13.4 and the mean score for WHODAS 2.0 was 10.4 ± 7.6. An association was found between people who were studying (n= 65.8; 95%CI, 63.5–68.1vs. n= 73.9; 95%CI, 67.5–80.3;p= 0.04) and better WHOQOL-BREF QoL scores or WHODAS 2.0 levels of functioning (n= 10.9; 95%CI, 9.6–12.2vs. n= 5.1; 95%CI, 2.5–7.7;p= 0.01). A weak negative correlation (r= 0.41) emerged between higher QoL scores and functioning improvement.ConclusionThis study indicates that the QoL of the sample is associated by their functioning levels, which, in turn, may reflect on their social interactions. Public policies that favor interventions increasing socialization of this population can result in better health outcomes. The QoL and functioning scores provide valuable insights to develop public policies more suited to this population profile. (shrink)

In this article I consider two pertinent questions that practitioners must consider when they deploy an algorithmic system as support in clinical shared decision‐making. The first question concerns how to interpret and assess the significance of different performance measures for clinical decision‐making. The second question concerns the professional obligations that practitioners have to communicate information about the quality of an algorithm's output to patients in light of the principles of autonomy, beneficence, and justice. In the article I review the (...) four standard performance measures used to evaluate and validate algorithms, outline their role in the discussion of algorithmic fairness, and discuss the professional responsibilities that practitioners face when communicating information about these measures to patients. (shrink)

Health-related quality of life measures aim to assess patients’ subjective experience in order to gauge an increasingly wide variety of health care issues such as patient needs; satisfaction; side effects; quality of care; disease progression and cost effectiveness. Their popularity is undoubtedly due to a larger initiative to provide patient-centered care. The use of patient perspectives to guide health care improvements and spending is rooted in the idea that we must respect patients as self-determining (...) agents. In this paper I look at the two main orientations to quality of life measurement: standardized and individualized measures. I argue that while these measures are attempts to provide for patient self-determination, they both fail to do so. In their place I suggest a new approach which overcomes their respective difficulties: a dialogic approach. (shrink)

Medical work is increasingly being subjected to objective assessment as those who pay for it seek to grasp the quality of that work and how best to improve it. While objective measures have a role in the assessment of health care, I argue that this role is currently overestimated and that no human practice such as medicine can be fully comprehended by objective assessment. I suggest that the character of practices, in which formalizations are combined (...) with judgment, requires that valid assessment involve the perspective of the skilled practitioner. Relying exclusively on objective measures in assessing health care will not only distort our assessments of it but lead to damage as the incentives of health care workers are directed away from the important aspects of their work that are not captured by objective measures. (shrink)

Despite having paved the way for face, womb and penis transplants, hand transplantation today remains a small hybrid of reconstructive microsurgery and transplant immunology. An exceptionally limited patient population internationally complicates medical researchers’ efforts to parse outcomes “objectively.” Presumed functional and psychosocial benefits of gaining a transplant hand must be weighed in both patient decisions and bioethical discussions against the difficulty of adhering to post-transplant medications, the physical demands of hand transplant recovery on the patient, and the serious long-term health (...) risks of immunosuppressant drugs. This paper relates five narratives of hand transplantation drawn from an oral history project to show how narrative methods can and should inform ethical evaluations and the clinical process of hand transplantation. The interviews with patients and their partners analyzed here lead us to suggest that qualitative accounts of patient experiences should be used to complement clinical case studies reported in medical journals and to help develop instruments to assess outcomes more systematically. (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)

Background: Informed consent goes beyond signing a form; it is a process of providing necessary information, helping patients make an informed decision, and actively participate in their treatment. Aim/objective: This study aimed to assess the quality of obtaining surgical informed consent in hospitals affiliated with Tehran University of Medical Sciences. Research design/participants/context: In a cross-sectional, descriptive-analytical study, 300 patients were chosen through stratified sampling from seven hospitals affiliated with Tehran University of Medical Sciences. Data were collected using a questionnaire (...) developed by the researchers and analyzed using descriptive and analytical statistics on SPSS software. Ethical considerations: Ethical approval of this study was granted by Tehran University of Medical Sciences research ethics committee. Written informed consent for participation was obtained. The participants were reassured that their information will be used anonymously and their answers will not affect their treatment and care. Findings: The mean score of quality of acquisition of informed consent was 17.13 out of 35, indicating that the quality falls in the inappropriate category. The results indicate that 48% of the signatories do not even read the form before signing it. Among the 52% who did read the consent form, 61.3% mentioned varying degrees of incomprehensibility of the consent form and 94.2% mentioned the presence of incomprehensible technical, medical and legal vocabulary. Only 12% and 18% of respondents reported that they were not in hurry and they had no fear or anxiety, respectively, when signing the form. The quality of obtaining informed consent was higher in women, younger patients, patients with higher education, and those who had special surgeries. Discussion: This study shows a poor practice in obtaining surgical informed consent in Iran. It seems necessary to consider fundamental changes in the process of acquiring consent based on the temporal and local conditions of the patients. (shrink)

There is no technical language with which to speak of patients' quality of life, there are no standard measures and no authority to validate criteria of measurement. It is well known that 'professionals' tend, often for institutional reasons, to play down or undervalue factors which are not defined by their particular expertise. It is fortunate that, despite this tendency, there is a growing interest in broadening the evaluation of medical care, but there is still a need to clarify (...) what is at issue in considerations of quality of life. This article examines the strengths and weaknesses of one approach to assessing quality of life, and sketches out the implications for anyone concerned to establish a framework within which both medical and non-medical objectives of care can be taken into account. (shrink)

Quality of care is a prominent discourse in modern health‐care and has previously been conceptualised in terms of ethics. In addition, the role of knowledge has been suggested as being particularly influential with regard to the nurse–patient–carer relationship. However, to date, no analyses have examined how knowledge (as an ethical concept) impinges on quality of care. Qualitative semi‐structured interviews were conducted with 26 patients with palliative and supportive care needs receiving district nursing care (...) and thirteen of their lay carers. Poststructural discourse analysis techniques were utilised to take an ethical perspective on the current way in which quality of care is assessed and produced in health‐care. It is argued that if quality of care is to be achieved, patients and carers need to be able to redistribute and redevelop the knowledge of their services in a collaborative way that goes beyond the current ways of working. Theoretical works and extant research are then used to produce tentative suggestions about how this may be achieved. (shrink)

ObjectiveTo determine the factors associated with quality of life and depressive symptoms in Peruvian university students during the COVID-19 pandemic.MethodsMulticentre study in 1,634 students recruited by convenience sampling. The quality of life was assessed with the European Quality of Life-5 Dimensions at three levels and depressive symptoms with the Patient Health Questionnaire-9. To assess factors associated with QoL and depressive symptoms, linear regressions and fitted regressions were used, with robust coefficients of variance information.ResultsA 345 reported problems in (...) performing daily activities, 544 reported pain and discomfort, 772 were moderately/very anxious or depressed. Furthermore, 207 had moderate-severe and severe depressive symptoms. Men reported better QoL than women and fewer depressive symptoms. Ayacucho’s residents had more depressive symptoms than Ancash’s residents and Piura’s residents had fewer depressive symptoms than Ancash’s residents. Students who left home during quarantine reported more depressive symptoms.ConclusionProblems performing daily activities, pain and discomfort, as well as mild to severe depressive symptoms were found in more than three-quarters of the sample. Authorities could consider depression care to improve quality of life in regions where high rates of infection occurred during the pandemic. (shrink)

The use of quality of life (QOL) outcomes in clinical trials is increasing as a number of practical, ethical, methodological, and regulatory reasons for their use have become apparent. It is important, then, that QOL measurements and differences between QOL scores be readily interpretable. We study interpretation in two contexts: when determining QOL and when basing decisions on QOL differences. We consider both clinical situations involving individual patients and research contexts, e.g., randomized clinical trials, involving groups of patients. We (...) note the ethical importance of such understanding: proper interpretation and communication facilitate health care decision making. Communication that facilitates interpretation is of moral significance since better communication can attenuate ethical problems and inform choices. Much of what is communication worthy about QOL assessments is determined by the particular QOL instrument used in the assessment and how it is administered. In practice, these choices will be driven by the purpose of the assessment, but, it is argued, to maximize understanding, we should combine the information garnered from traditional standardized QOL instruments, from individualized QOL assessments, and from a recently proposed dialogic paradigm, where QOL is determined by shared conversation regarding the interpretation of texts. And, while some studies can surely succeed using abbreviated methods of administration (e.g., postal surveys may suffice for certain purposes), we will focus on methods of administration involving interviewer–respondent interaction. We suggest that during the QOL elicitation process, interviewer and respondent should engage in a two-way conversation in order to achieve a shared understanding of the “answers” to QOL “questions” and, finally, to reach a shared interpretation of the individual’s QOL. (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: Ethics-of-care theories contain important notions regarding the quality of care; however, until now, concrete translations of the insights into instruments are lacking. This may be a result of the completely different type of epistemology, theories and concepts used in the field of quality of care research. Objectives: Both the fields of ‘ethics of care’ and ‘quality of care’ aim for improvement of care; therefore; insights could possibly meet by focusing on (...) the following question: How could ethics-of-care theories contribute to better quality in care at a measurement level? This study reviews existing instruments with the aim of bridging this gap and examines the evidence of their psychometric properties, feasibility and responsiveness. Research design: A systematic search of the literature was undertaken using multiple electronic databases covering January 1990 through May 2012. Method and findings: Of the 3427 unique references identified, 55 studies describing 40 instruments were selected. Using a conceptual framework, an attempt was made to distinguish between related concepts and to group available instruments measuring different types of concepts. A total of 13 instruments that reflect essential aspects of ethics-of-care theory were studied in greater detail, and a quality assessment was conducted. Conclusion: Three promising qualitative instruments were found, which follow the logic of the patient and take their specific context into account. (shrink)

Persons with profound intellectual and multiple disabilities cannot speak about their Quality of Life, which makes it necessary to involve others. In current approaches, these ‘others’ are seen as assessors trying to describe QoL as objectively as possible, which involves a reduction of their experiences, through which they develop knowledge on the QoL of the person with PIMD. The objective of this paper is to give caregivers’ knowledge on the QoL of a person with PIMD a theoretical basis that (...) values these experiences. We will argue that caregivers should be seen as witnesses, not assessors, and their statements on QoL as testimonies, not assessments. Audiences judge the trustworthiness of these witnesses intersubjectively, which implies a relationship characterized by trust and suspicion. Trust supports the witness to tell in her own words about the QoL of the person with PIMD; it demands receptivity, indicating that both the witness and the audience are willing to reconsider their perspective on QoL. Suspicion is necessary too, which helps the witness to critically approach her own interpretations and supports her to create more trustworthy testimonies. We conclude that the concept of witnessing helps to acknowledge caregivers’ experiential knowledge of QoL of a person with PIMD, which may also apply to other persons who cannot speak about their own QoL. We hope that our study will empower caregivers to give testimonies on QoL of a person with PIMD, which is crucial when complex decisions about the life of this person have to be made. (shrink)

Source: Author: Mohammad Sabahi Bidgoli, Ali Kebriaei, Sayed Gholamabas Moosavi Background and Aim: Patients' viewpoints are commonly used to assess quality of care in diverse healthcare organizations. This permits managerial decisions to be made based on knowledge rather than conjecture. The purpose of the current study is to investigate quality gap of family health care through measuring differences between clients’ perceptions and expectations at Kashan city health centers in Iran.Methodology: A cross-sectional design was applied in 2013. (...) The study sample was composed of 384 women clients of family health services randomly selected from Kashan city health centers. The SERVQUAL questionnaire was used for data collection. Service quality gap was measured by computing the difference between the rating respondents assign to expectations and perceptions statements. For pair wise comparison of the expectations and perceptions the Wilcoxon Signed Rank test was used. Internal consistency of the scale was confirmed with Cronbach's Alpha coefficients.Findings: In all dimensions of the services a significant (P ]]>. (shrink)

Growing attention is being paid to the importance of trust, and its corollaries such as mistrust and distrust, in health service and the central place they have in assessments of quality of care. Although initially focussing on doctor-patient relationships, more recent literature has broadened its remit to include trust held in more abstract entities, such as organisations and institutions. There has consequently been growing interest to develop rigorous and universal measures of trust.

The ‘Ashley treatment’ has raised much ethical controversy. This article starts from the observation that this debate suffers from a lack of careful philosophical analysis which is essential for an ethical assessment. I focus on two central arguments in the debate, namely an argument defending the treatment based on quality of life and an argument against the treatment based on dignity and rights. My analysis raises doubts as to whether these arguments, as they stand in the debate, are (...) philosophically robust. I reconstruct what form good arguments for and against the treatment should take and which assumptions are needed to defend the according positions. Concerning quality of life, I argue that to make a discussion about quality of life possible, it needs to be clear which particular conception of the good life is employed. This has not been sufficiently clear in the debate. I fill this lacuna. Regarding rights and dignity, I show that there is a remarkable absence of references to general philosophical theories of rights and dignity in the debate about the Ashley treatment. Consequently, this argument against the treatment is not sufficiently developed. I clarify how such an argument should proceed. Such a detailed analysis of arguments is necessary to clear up some confusions and ambiguities in the debate and to shed light on the dilemma that caretakers of severely disabled children face. (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)

The primary purpose of this study is to understand if/how patients of hospice healthcare require ‘Spiritual’ or/and ‘Religious’ assistance and if its involvement in palliative care helps greatly. We have built a correlative of two scales and administrated them on the same sample, along with complete demographics questions to a group of people under palliative care and several people directly connected with patients, relatives- families. This methodological study is designed to assess the reliability and validity of two scales (...) simultaneously for the same terminally ill patients (TIP): Paloutzian and Ellison’s (1982) Spiritual Well-being Scale. The scale was administered to 49 individuals, of which 45 are patients and 4 family members caring for a terminally ill relative. Background: Coping is a multifactorial and individual process related to responding to stressful situations, such as being a caregiver of a person with health conditions or terminal illness [such as in hospice]. Spiritual [S] / religious [R] coping is an essential internal resource used by individuals enduring stressful situations or, in this particular case, confronting imminent death. Instruments: The 14-item Brief RCOPE is widely used to assess religious coping. The other instrument we have used for S/R assessment is the Spiritual Well-Being (SWB) Scale, a general measure of the subjective quality of life. Neither one is available in the Romanian version Ciocan Tudor-Cosmin (2023) developed following Romanian culture. He worked with Professor Ray Paloutzian - author of the latter scale - to translate and validate the use of the translated scales. Objective: To investigate the S/RWB among palliative care patients in Romania and to identify the correlates of Spiritual and Religious Well-Being. Secondary: To translate, adapt and validate both the 14-item Brief RCOPE and SWBS in Romanian for caregivers of palliative patients facing death. Method: The methodological guideline provided by Ray Paloutzian and Craig W. Ellison was used to examine the psychometric properties of SWBS, while the manual provided by Kenneth Pargament on his website helped us accommodate the Brief RCOPE to Romanian culture and understanding. Results: The linguistic and conceptual equivalence of the scales was determined. The internal consistency was acceptable (Cronbach’s a = 0.891 for SWBS and a = 0.798 for RCOPE). The Principal Axis Factor (PAF) analysis with varimax rotation identified two factors comprising 13 items, and one item was excluded from the scale (14/RCOPE). The faith subscale (SWBS) showed similar distributions. Christians engaged in religious activities reported higher SWB in the meaning and peace subscale than patients without religious attendance. In the multivariate analysis, religious Frequency (P < 0.001), and individual spiritual activities (P < 0.003) were significantly related to a greater SWB. Conclusion: The Romanian versions of the SWBS and Brief RCOPE are reliable and valid measures for assessing both the spiritual and religious coping of patients in hospice, their families, and their caregivers. Although faith practices may be beneficial to improve spiritual well-being among Orthodox Christians (the majority in Romania), further research is needed to determine what individual spiritual activities can be supported by Orthodox Christians positively engaged – since they are very skeptical about practices other than religious ones, introduced by the traditional Church. (shrink)