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)

There is ongoing ethical and legal debate about withdrawing life sup- port for patients with disorders of consciousness (DOCs). Frequently fu- eling the debate are implicit assumptions about the value of life in a state of impaired consciousness, and persistent uncertainty about the quality of life (QoL) of these persons. Yet there are no validated methods for assessing QoL in this population, and a significant obstacle to doing so is their inability to communicate. Recent neuroscientific discoveries (...) might circumvent that problem and help shed light on QoL in DOCs. There is an ethical imperative to prioritize QoL research in this patient population, to provide evidence to inform treatment, research, and end of life decisions. A minimalist and pragmatic model of QoL is proposed, targeting positive and negative affect as domains for which there is po- tential to reach across the communication gap, and restore to these voiceless persons some measure of control. (shrink)

Work done within the realm of what is sometimes called ‘descriptive ethics’ brings two questions readily to mind: How can empirical findings, in general, inform normative debates? and How can these empirical findings, in particular, inform the normative debate at hand? Brick et al 1 confront these questions in their novel investigation of public views about lives worth living and the permissibility of withdrawing life-sustaining treatment from critically ill infants. Mindful of the is-ought gap, the authors suggest modestly that (...) their data ‘may be useful when constructing guidelines for clinical practice’. In this commentary, I consider some potential limitations on the generalisability of these data in the context of policy and clinical practice, limitations which may in turn serve as directions for future empirical research. The authors’ study presented participants six case scenarios, five of which involved the possibility of withdrawing life-sustaining treatment from critically ill infants. The results revealed that “[a]lmost all respondents agreed that at some level of quality of life, life may be of no benefit or worse than death for an infant” and that “participants significantly favoured withdrawal of treatment for the most severe cases.” One salient detail in these scenarios …. (shrink)

The aim of the present paper is to describe three different attempts, which have been made by philosophers, to define what quality of life is; and to spell out some of the difficulties that faces each definition. One, Perfectionism, focuses on the capacities that human beings possess: capacities for friendship, knowledge and creative activity, for instance. It says that the good life consists in the development and use of these capacities. Another account, the Preference Theory, urges that (...) satisfying one's preferences, or desires, is what improves one's quality of life. And a third account, Hedonism, sees life-quality as consisting in the enjoyment of pleasure and the avoidance of pain. The paper describes and evaluates objections to each of these views, thereby displaying their weaknesses and strengths. Since no view comes out as the right one there is a choice to be made. At the end of the paper it is being discussed how well each of the views cohere with different methodologies used in quality of life research. Also it is suggested that considerations about what the research is to be used for are relevant. (shrink)

The technological advances in medicine, including prolongation of life, have constituted several dilemmas at the end of life. In the context of the Belgian debates on end-of-life care, the views of Muslim women remain understudied. The aim of this article is fourfold. First, we seek to describe the beliefs and attitudes of middle-aged and elderly Moroccan Muslim women toward withholding and withdrawing life-sustaining treatments. Second, we aim to identify whether differences are observable among middle-aged and elderly (...) women’s attitudes toward withholding and withdrawing life-sustaining treatments. Third, we aim to explore the role of religion in their attitudes. Fourth, we seek to document how our results are related to normative Islamic literature. Qualitative empirical research was conducted with a sample of middle-aged and elderly Moroccan Muslim women living in Antwerp and with experts in the field. We found an unconditional belief in God’s sovereign power over the domain of life and death and in God’s almightiness. However, we also found a tolerant attitude, mainly among our middle-aged participants, toward withholding and withdrawing based on theological, eschatological, financial and quality of life arguments. Our study reveals that religious beliefs and worldviews have a great impact on the ethical attitudes toward end-of-life issues. We found divergent positions toward withholding and withdrawing life-sustaining treatments, reflecting the lines of reasoning found in normative Islamic literature. In our interviews, theological and eschatological notions emerged as well as financial and quality of life arguments. (shrink)

The aim of this encyclopedia is to provide a comprehensive reference work on scientific and other scholarly research on the quality of life, including health-related quality of life research or also called patient-reported outcomes research. Since the 1960s two overlapping but fairly distinct research communities and traditions have developed concerning ideas about the quality of life, individually and collectively, one with a fairly narrow focus on health-related issues and one with (...) a quite broad focus. In many ways, the central issues of these fields have roots extending to the observations and speculations of ancient philosophers, creating a continuous exploration by diverse explorers in diverse historic and cultural circumstances over several centuries of the qualities of human existence. What we have not had so far is a single, multidimensional reference work connecting the most salient and important contributions to the relevant fields. Entries are organized alphabetically and cover basic concepts, relatively well established facts, lawlike and causal relations, theories, methods, standardized tests, biographic entries on significant figures, organizational profiles, indicators and indexes of qualities of individuals and of communities of diverse sizes, including rural areas, towns, cities, counties, provinces, states, regions, countries and groups of countries. (shrink)

Quality improvement mechanisms increasingly use outcome measures to evaluate health care providers. This move toward outcome measures is a radical departure from the traditional focus on process measures. More radical still is the proposal to shift from relatively simple and proximal measures of outcome, such as mortality, to complex outcomes, such as quality of life. While the practical, scientific, and ethical issues associated with the use of outcomes such as mortality and morbidity to compare health care providers (...) have been well rehearsed, the specific concerns associated with the use of quality of life measures in quality of care research have received little attention. As with much research on quality of life there is a tendency to assume that the disadvantages are outweighed by the general virtue of “listening” to patients. In this paper we disagree with this assumption and argue that quality of life is a process, not an outcome. (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)

Recent work in the psychology of happiness has led some to conclude that we are unreliable assessors of our lives and that skepticism about whether we are happy is a genuine possibility worth taking very seriously. I argue that such claims, if true, have worrisome implications for procreation. In particular, they show that skepticism about whether many if not most people are well positioned to create persons is a genuine possibility worth taking very seriously. This skeptical worry should not be (...) confused with a related but much stronger version of the argument, which says that all human lives are very bad and not worth starting. I criticize the latter stance, but take seriously the former stance and hope it can be answered in future work. (shrink)

The basic work for this book was carried out during the spring of 1989 in Edinburgh, where I had been granted a research position at The Institute for Advanced Studies in the Humanities. I should like to express here my indebtedness to the Institute for the opportunity thus afforded me. I should also like to say how very grateful I am for the stimulating conversations I had there with Professor Timothy Sprigge and Dr. Elizabeth Telfer. Dr. Telfers’s own treatise (...) Happiness has been a major influence on my view of the questions involved. The basic view of health and illness presented in this book is more fully set out in my On the Nature of Health. As in the case of my previous larger projects, I have received a great amount of support and may wise comments from Professor Ingmar Pörn, Helsinki. Three Danish experts – Anton Aggernaes, Erik Ostenfeld and Peter Sandøe – have made valuable comments. Professor Heng ten Have, Nijmegen, has improved my reading of the philosophy of Jeremy Bentham. I should also like to thank my colleagues at the Department of Health and Society, University of Linköping, for helping me to avoid a number of the pitfalls that can so easily stumble into when it comes to a treatise like this. Especially I should like to mentioned Per-Erik Liss, Ingemar Nordin and Bo Petersson, all three of whom have read and commented on the entire manuscript. A Swedish version of this book, Livskvalitet och hälsa, came out in 1991. I have been made quite a number of corrections and additions, one type of addition being replies to critical points made in reviews of the Swedish version. I should like to thank Malcolm Forbes for valuable help putting my English into publishable condition. Linköping, May 1993 Lennart Noredenfelt. (shrink)

In recent years a number of commentators have discussed the importance of measuring quality of life in health care. We want to know whether an intervention will help people to live better, not just longer, and whether some treatments cause more trouble than they are worth. New technologies promise wondrous benefits. But when millions of people have no insured access to health care, and when many others face increasingly stringent limits on care, technologies’ high costs require us to (...) choose what we should do from the broader universe of what we can do.The challenges to measuring QL are formidable. Researchers debate whether to measure general QL or disease-specific QL; whether to focus on functional status such as the patient's ability to walk and dress himself, or on the value people ascribe to that functional status; whether to seek the values of the general public, or to concentrate on people actually affected by a given disease or disability. (shrink)

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)

In recent years a number of commentators have discussed the importance of measuring quality of life in health care. We want to know whether an intervention will help people to live better, not just longer, and whether some treatments cause more trouble than they are worth. New technologies promise wondrous benefits. But when millions of people have no insured access to health care, and when many others face increasingly stringent limits on care, technologies’ high costs require us to (...) choose what we should do from the broader universe of what we can do.The challenges to measuring QL are formidable. Researchers debate whether to measure general QL or disease-specific QL; whether to focus on functional status such as the patient's ability to walk and dress himself, or on the value people ascribe to that functional status; whether to seek the values of the general public, or to concentrate on people actually affected by a given disease or disability. (shrink)

Quality of life research aims to develop and apply indices for the measurement of human welfare. It is an increasingly important field within the social sciences and its results are an important resource for policy making and evaluation. This paper explores the conceptual background of quality of life research. It focuses on its single most important issue: the controversy between the use of ``objective social indicators'' and the use of people's ``subjective evaluations'' as proxies (...) for welfare. Most quality of life researchers today argue that people's own evaluations have an indispensable role in quality of life measurement. I argue that their position must be defended on philosophical grounds, because their use of evaluations commits them to some particular theories of welfare. I explore the connections between theories of welfare in philosophy and the use of evaluations in quality of life research. I conclude that even though evaluations may have a role in particular applications, they are unlikely to have a role in all applications. (shrink)

The aim of the article is to examine differences in the quality of life as well as gratitude, meaning in life and positive orientation to life between diocesan and religious seminarians and secular students. The influence of religiosity on quality of life and subjective well-being is the subject of numerous studies, but seminarians have rarely been included in them. The present research was carried out for the first time with a group of diocesan (...) and religious seminarians in Poland and secular students. The study involved 296 participants—98 diocesan seminarians, 96 religious seminarians and 102 secular students in the control group. Results showed significant differences in the quality of life. Religious and diocesan seminarians scored higher than the control group members in the psychophysical, personal, psychosocial and metaphysical spheres. In addition, in terms of gratitude, and the presence of meaning in life, religious and diocesan seminarians achieved higher scores than the control group but lower scores in searching for the meaning in life. There were no significant differences between diocesan and religious seminarians except that only diocesan seminarians obtained significantly higher scores on positive orientation to life than the control group. Overall, results support the idea that seminarians have higher quality of life and subjective well-being than secular students. Research implications are discussed. (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)

Only in recent years have the German bioethical and biopolitical debates begun to decline due to rationalization concerning stem cell research or the pre-implantation diagnosis related to the ethical status of the beginning of human life. This is due to the fact that in these contexts we have to ask whether quality of life assessment is ethically acceptable in principle. A fundamental premise in the current debate is that quality of life assessment and human (...) dignity are incompatible. In this paper four different standards of quality of life assessment are distinguished (the naturalistic, the social, the interpersonal and the personal standard). Then an interpretation of human dignity is developed which rests on the essential feature of human beings to develop the capacity for personal autonomy. Finally it is argued that human dignity in this sense is compatible with quality of life assessments based on the personal and the interpersonal standard. (shrink)

In middle adulthood the intensity of stress is significantly higher than in the preceding developmental period. This stress is particularly significant in the case of chronically ill women, including those with type 2 diabetes. In this group, the disease-related stress intensifies the difficulties generated by the decrease of age-related organismic resources and in many instances impairs the quality of life. Therefore, an ability to cope with difficult situations is of crucial importance. The aim of the research was (...) to estimate the general level of life-satisfaction, as well as the frequency and effectiveness of proactive coping strategies in a group of middle adulthood women with type 2 diabetes compared to women not suffering from diabetes. The study was conducted with methods which have acknowledged psychometric properties as well as a survey collecting sociodemographic data. Women suffering from type 2 diabetes are less satisfied with their prior and current life, health and the physical dimension of their lives and environment. Only partially do they employ proactive coping strategies different from those used by the women from the healthy group. For life-satisfaction in its various aspects it is particularly important for the diabetic women to more often use the strategy of reflective coping and to less often seek emotional support while using the strategy of preventive coping or avoidance. The proactive strategies directed at anticipated stress are connected with the level of life-satisfaction and considered to be health resources. (shrink)

In this peer commentary on L. Syd M. Johnson’s “Inference and Inductive Risk in Disorders of Consciousness,” I argue for the necessity of disability education as an integral component of decision-making processes concerning patients with DOC and, mutatis mutandis, all patients with disabilities. The sole qualification Johnson places on such decision-making is that stakeholders are educated about and “understand the uncertainties of diagnosis and prognosis.” Drawing upon research in philosophy of disability, social epistemology, and health psychology, I argue that (...) this educational qualification is insufficient to address systemic ableism and other forms of epistemic bias in quality of life judgments. (shrink)

Objective: Quality of Life is an important predictor of patient's recovery and survival in lung cancer patients. The aim of the present study is to identify 1-year trends of lung cancer patients' QoL after robot-assisted or traditional lobectomy and investigate whether clinical and sociodemographic variables may predict these trends.Methods: An Italian sample of 176 lung cancer patients undergoing lobectomy completed the European Organization for Research and Treatment of Cancer Quality of Life Questionnaire—Core 30 at the (...) pre-hospitalization, 30 days, 4 months, 8 months, and 12 months after surgery. Sociodemographic and clinical characteristics were also collected. The individual change over time of the 15 dimensions of the EORTC QLQ-C30 and the effects of pre-surgery scores of QoL dimensions, type of surgery, perioperative complications, and age on patients' QoL after surgery were studied with the individual growth curve models.Results: Patients had a good recovery after lobectomy: functioning subscales improved over time, while most of the symptoms became less severe over the care process. Perioperative complications, type of surgery, pre-surgery status, and age significantly affected these trends, thus becoming predictors of patients' QoL.Conclusion: This study highlights different 1-year trends of lung cancer patients' QoL. The measurement of pre- and post-surgery QoL and its clinical and sociodemographic covariables would be necessary to better investigate patients' care process and implement personalized medicine in lung cancer hospital divisions. (shrink)

ObjectivesQuality of life has been the focus of increasing interest in oncology. QoL assessment instruments implicitly assume that each QoL domain has the same meaning for each patient. The objective of this study was to analyze the importance of and the satisfaction with QoL domains and to analyze the relationship between the two.MethodsA sample of 308 breast cancer survivors was examined twice with a three-month time interval. The women completed the two QoL questionnaires Questions of Life Satisfaction, which (...) measures participants' satisfaction with eight QoL domains and the subjective importance of those domains to them, and the EORTC QLQ-C30. A sample of 1,143 women from the general population served as controls.ResultsCompared with the general population sample, the patients were less satisfied with their health and more satisfied with all other QoL domains. The subjective importance of health was lower in the patients' sample. Satisfaction with health and importance of health were slightly positively correlated. The effect of QoL domain importance on general QoL was small, and interaction effects between domain importance and satisfaction on the prediction of global QoL were negligible.ConclusionIn addition to satisfaction with QoL dimensions, the subjective importance of these dimensions is relevant for psychooncological research and treatment. Health is not the only relevant QoL domain in breast cancer survivors, other domains such as finances also deserve health care providers' attention. (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)

Household confinement due to the rapid spread of the pandemic caused by COVID-19 has brought very significant changes, such as the forced stay-at-home of children due to the closure of schools. This has meant drastic changes in the organization of daily life and restrictions on their activities, including exercise, which could affect the quality of life of the children due to its importance. In order to study the relationship between physical activity and psychological well-being of minors, a (...) study has been carried out with Mixed Methods Research, combining survey methodology with transversal design with qualitative methodology using discourse analysis. A total of 234 parents of minors in Spain and several Spanish-speaking countries in America participated. The instrument was a questionnaire in Google Forms, which included the Kidscreen-27 quality of life scale. The results show significant differences in both the type of physical activity and its frequency due to age, and differences in parents’ perception of whether their children’s physical activity levels were sufficient or not, both on the health, mood and school subscales, and in the categorization of open responses referring to concerns due to the pandemic, analyzed with the ALCESTE technique. The relationship between physical activity of children and adolescents and quality of life is clearly concluded. (shrink)

One of the fundamental aims of nursing is to safeguard or promote patients' "quality of life." Perspectives on Quality of Life examines existing ways of defining the concept and argues that nurses need to adopt a fresh approach, which more accurately reflects patients' concerns and helps them to develop practical ways of promoting the well-being of people in their care. Part One provides an analysis of statistical approaches to quality of life, including social indicators, (...) the Quality Adjusted Life Year (QALY), and the medical outcomes literature. Part Two proposes an alternative, qualitative approach to organizing care, which respects the patients' choice and individuality. Part three presents the findings of new research into the quality of life of older people in hospital wards. (shrink)

Sufism has two main dimensions: vertical (God's pleasure) and horizontal (harmony with nature, society and local wisdom). In reality, many Sufis are considered less concerned about the balancing between vertical and horizontal dimensions. The research explores the concepts and practices of hybrid Sufism undertaken by Kyais (religious leaders) and their followers in improving quality of life. Ethnography was used for exploring the mindset and activities of Kyai and his followers. This study involved four Kyais in Java and (...) Kalimantan, Indonesia. Research data were obtained through participant observations, in-depth interviews and documentation. The data were analysed by Spadley's ethnographic steps as follows: (1) domain analysis, (2) taxonomy analysis, (3) componential analysis and (4) cultural-thematic analysis. The results showed that hybrid Sufism could improve quality of life. Hybrid Sufism can better appreciate and interpret local wisdom with an attitude of preserving nature and a positive understanding of worldly wealth, increasing the hard work ethos to achieve material-spiritual qualities. CONTRIBUTION: This article shows that hybrid Sufism encourages the life of Sufis in harmony between vertical and horizontal aspects. This understanding and lifestyle give rise to respect for others, being friendly to the environment and interpreting life and local wisdom. (shrink)

The level of medical care to patients and the success of the implementation of the national project "Health" depend on the health status and doctor's professionalism. Modern healthcare reform is being implemented by optimizing costs, merging medical organizations, closing ineffective hospitals, expanding the use of high-tech care and informatization of the doctor's activities. All this makes it necessary to assess the health of doctors. Scientists have studied the quality of life and identified the professional burnout of doctors in (...) children's clinics in different age groups. Primary care pediatricians have a higher quality of life score when compared to the standard [1]. However, all groups have a high level of professional burnout. The pre-retirement group of doctors has more unfavorable profile. They are highly professional specialists but may experience emotional discomfort because the pension system has been reformed. This situation requires the introduction of preventive work with doctors of this age as a group with great potential and capable of professional longevity. (shrink)

This is the first volume devoted to the topic of dance and quality of life. Thirty-one chapters illuminate dance in relation to singular and overlapping themes of nature, philosophy, spirituality, religion, life span, learning, love, family, teaching, creativity, ability, socio-cultural identity, politics and change, sex and gender, wellbeing, and more. With contributions from a multi-generational group of artists, community workers, educators, philosophers, researchers, students and health professionals, this volume presents a thoughtful, expansive-yet-focused, and nuanced discussion of dance’s (...) contribution to human life. The volume will interest dance specialists, quality of life researchers, and anyone interested in exploring dance’s contribution to quality of living and being. (shrink)

Sufism has two main dimensions: vertical (God's pleasure) and horizontal (harmony with nature, society and local wisdom). In reality, many Sufis are considered less concerned about the balancing between vertical and horizontal dimensions. The research explores the concepts and practices of hybrid Sufism undertaken by Kyais (religious leaders) and their followers in improving quality of life. Ethnography was used for exploring the mindset and activities of Kyai and his followers. This study involved four Kyais in Java and (...) Kalimantan, Indonesia. Research data were obtained through participant observations, in-depth interviews and documentation. The data were analysed by Spadley's ethnographic steps as follows: (1) domain analysis, (2) taxonomy analysis, (3) componential analysis and (4) cultural-thematic analysis. The results showed that hybrid Sufism could improve quality of life. Hybrid Sufism can better appreciate and interpret local wisdom with an attitude of preserving nature and a positive understanding of worldly wealth, increasing the hard work ethos to achieve material-spiritual qualities. CONTRIBUTION: This article shows that hybrid Sufism encourages the life of Sufis in harmony between vertical and horizontal aspects. This understanding and lifestyle give rise to respect for others, being friendly to the environment and interpreting life and local wisdom. (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)

Monetary Intelligence theory asserts that individuals apply their money attitude to frame critical concerns in the context and strategically select certain options to achieve financial goals and ultimate happiness. This study explores the bright side of Monetary Intelligence and behavioral economics, frames money attitude in the context of pay and life satisfaction, and controls money at the macro-level and micro-level. We theorize: Managers with low love of money motive but high stewardship behavior will have high subjective well-being: pay satisfaction (...) and quality of life. Data collected from 6586 managers in 32 cultures across six continents support our theory. Interestingly, GDP per capita is related to life satisfaction, but not to pay satisfaction. Individual income is related to both life and pay satisfaction. Neither GDP nor income is related to Happiness. Our theoretical model across three GDP groups offers new discoveries: In high GDP entities, “high income” not only reduces aspirations—“Rich, Motivator, and Power,” but also promotes stewardship behavior—“Budget, Give/Donate, and Contribute” and appreciation of “Achievement.” After controlling income, we demonstrate the bright side of Monetary Intelligence: Low love of money motive but high stewardship behavior define Monetary Intelligence. “Good apples enjoy good quality of life in good barrels.” This notion adds another explanation to managers’ low magnitude of dishonesty in entities with high Corruption Perceptions Index. In low GDP entities, high income is related to poor Budgeting skills and escalated Happiness. These managers experience equal satisfaction with pay and life. We add a new vocabulary to the conversation of monetary intelligence, income, GDP, happiness, subjective well-being, good and bad apples and barrels, corruption, and behavioral ethics. (shrink)

In this paper three questions concerning quality of life in medicine and health care are analysed and discussed: the motives for measuring the quality of life, the methods used in assessing it, and the definition of the concept. The purposes of the study are to find an ethically acceptable motive for measuring the quality of life; to identify the methodological advantages and disadvantages of the most prevalent current methods of measurement; and to present an (...) approach towards measuring and defining the quality of life which evades the difficulties encountered and discussed. The analysis comprises measurements both in the clinical situation concerning individual patients and in research concerning whole populations.Three motives are found for evaluating the quality of human life: allocation of scarce medical resources, facilitating clinical decision making, and assisting patients towards autonomous decision making. It is argued that the third alternative is the only one which does not evoke ethical problems. (shrink)

This article examines whether democracy affects quality of life. Scholars have conducted surveys to investigate whether democracy is likely to lead to good quality of life. There are two contested views to the relationship: some suggest that democracy has a positive causal effect on quality of life, whereas others contend that democracy does not play such a role. Previous findings are supported by cross-national statistical analysis with aggregated survey data. However, aggregated survey data may (...) cause ecological fallacy. Also, in order to ascertain the extant research, it would be beneficial to test the hypothesis by incorporating both individual- and country-level variables. Therefore, this paper applied hierarchical modeling to investigate the regularity. Both individual-level perception of democracy and country-level political regime data were incorporated in our empirical model. Our findings suggest that individual-level satisfaction with democracy has positive causal effect on one's quality of life, whereas the country-level characteristic of the political regime has no effect. (shrink)

PurposePrevious studies examining the relationship between health-related quality of life and speech perception ability in cochlear implant users have yielded variable results, due to a range of factors, such as a variety of different HRQoL questionnaires and CI speech testing materials in addition to CI configuration. In order to decrease inherent variability and better understand the relationship between these measures in CI users, we administered a commonly used clinical CI speech testing battery as well as two popular HRQoL (...) questionnaires in bimodal and bilateral CI users.MethodsThe Glasgow Benefit Inventory, a modified five-factor version of the GBI, and the Nijmegen Cochlear Implant Questionnaire were administered to 25 CI users. Speech perception abilities were measured with the AzBio sentence test in several conditions.ResultsHigher performance scores on the GBI general subscore were related to greater binaural speech perception ability in noise. There were no other relationships between the GBI or NCIQ and speech perception ability under any condition. Scores on many of the GBI-5F factors were substantially skewed and asymmetrical; therefore, correlational analyses could not be applied. Across all participants, binaural speech perception scores were greater than first-ear CI only scores.ConclusionThe GBI general subscore was related to binaural speech perception, which is considered the everyday listening condition of bimodal and bilateral CI users, in noise; while the more CI-specific NCIQ did not relate to speech perception ability in any listening condition. Future research exploring the relationships between the GBI, GBI-5F, and NCIQ considering bimodal and bilateral CI configurations separately is warranted. (shrink)

Background: In Germany, a large proportion of mentally ill offenders spends many years in a forensic psychiatric hospital. To ensure that the highly restrictive living conditions in these closed institutions meet patient needs, research must assess and analyze patient quality of life. For this purpose, we adapted the Measuring the Quality of Prison Life questionnaire to measure the quality of life in forensic psychiatric hospitals from the patient perspective. This study aimed to assess (...) the reliability and construct validity of the adapted questionnaire.Methods: To evaluate the questionnaire, a one-time survey was carried out at 13 forensic psychiatric hospitals in Germany. Item characteristics and internal consistency of the scale and subscales were calculated and the factor structure was tested using confirmatory factor analysis. To test of responsiveness we compared the mean quality of life between the 13 hospitals and further investigated whether the patients' evaluation of quality of life is depending on age and duration of accommodation.Results: The analysis of the psychometric properties revealed very good item characteristics and very good to excellent internal reliability. Construct validity was demonstrated. Patient's quality of life was significantly associated with age and duration of accommodation.Discussion: The adapted Measuring the Quality of Prison Life questionnaire is a reliable and valid instrument for measuring quality of life in forensic psychiatric hospitals and can be used in the future to compare hospitals and identify the strengths and weaknesses of each. (shrink)

While psychotherapists are trained to improve their clients’ quality of life, little work has examined the quality of life experienced by psychotherapist trainees themselves. Yet their life satisfactions and stresses would plausibly affect both their ability to learn new skills and conduct psychotherapy. Therefore, in the Society for Psychotherapy Research Interest Section on Psychotherapist Development and Training study, we investigated the patterns of self-reported life quality and their correlates in a multinational sample (...) of 1,214 psychotherapist trainees. A comprehensive questionnaire was used at the outset of trainings to assess trainees’ professional background, current life situation, personal characteristics, family background, and social and national origin. The findings indicated 54.3% of trainees’ lives could be characterized as fortunate or happy, whereas 14.3% could be characterized as clearly distressed or troubled. The strongest correlates of high life stress, a contributor to poor life quality, were economic insecurity, self-protectiveness, and attachment-related anxiety in relationships, and economic or psychological hardship in childhood. In turn, greater wellbeing was most strongly associated with a warm and open interpersonal style, being married, having sufficient economic means, and material and emotional security in childhood. While the results indicate the majority of therapists experience a relatively good quality of life, the findings also suggest potential targets for increasing trainees’ life quality when it may be deficient, such as those on a societal level, training program level, and individual level, in order to promote effective learning and therapy practice. (shrink)

The subject of the paper is the philosophical aspects of the quality of life. Although in philosophical terminology this notion is not used very often, the question “What is a good happy and high-quality human life?” is one of the earliest in the anthropological philosophy. Philosophical questions concerning this problem might therefore be inspiring, and determining for the theoretical and methodological orientations of the researches in this field. The author approaches the quality of life (...) from three points of view: from the point of view of the ontological difference – as a certain ontological modus, as an ontic experience and as a substantive, existential characteristic of being. According to the author the fundamental element of the quality of life as a whole is the compensation of existential anxiety and focusing on the meaning of life. (shrink)

In this paper I evaluate the implications of contemporary information and communication media for the quality of life, including both the new media from the digital revolution and the older media that remain in use. My evaluation of contemporary media proceeds in three parts. First I discuss the benefits of contemporary media, with special emphasis given to their immediate functional benefits. I then discuss four potential threats posed by contemporary media. In a final section I examine the future (...) of digital media and the possibilities available to us in shaping that future. (shrink)

The COVID-19 pandemic may affect the world severely in terms of quality of life, political, environmental, and economic sustainable development, and the global economy. Its impact is attested to by the number of research studies on it. The main aim of this study is to evaluate the impact of COVID-19 on the psychology of sustainability, on sustainable development, and on the global economy. A computerized literature search was performed, and journal articles from authentic sources were extracted, including (...) MEDLINE, Google Scholar, Science Direct, ProQuest, and Emerald Insight. The references in selected articles were screened to identify any relevant studies. The following inclusion criteria were followed: research articles based on the COVID-19 pandemic, and articles, research papers, journals, and news articles published 2010 to 2020. The exclusion criteria were as follow: psychology research, articles, and journals published before 2010 and research articles having no link with the current pandemic’s impact on the psychology of sustainability, quality of life, and the global economy. Of the initial 350 articles identified, only 61 studies were found to be relevant and meet the inclusion criteria. Based on these articles, the review highlights that compared to developed countries, the developing nations and poor nations such as African countries with compromised health structures have been greatly affected. There are close associations between health, economic, environmental, and political issues globally. The pandemic can be managed if we follow new policies that implement economic and public health changes worldwide. A planned, coordinated approach between the public-private sector is required, designed according to each country’s health system and economy. We can come out of this crisis if we work together and support both developed and developing nations. (shrink)

Background:Women's health has received renewed attention in the last few years including health rehabilitation options for women affected by breast cancer. Dancing has often been regarded as one attractive option for supporting women's well-being and health, but research with women recovering from breast cancer is still in its infancy. Dancing with Health is multi-site pilot study that aimed to evaluate a dance programme for women in recovery from breast cancer across five European countries.Methods:A standardized 32 h dance protocol introduced (...) a range of Latin American dances presented within a sports and exercise framework with influences from dance movement therapy. Fifty-four women (M age 53.51; SD 7.99) participated in the study who had a breast cancer diagnosis 6 weeks, no indication of metastasis, or scheduled surgery/chemotherapy/radiation treatment for the duration of the intervention. Primary outcome data was collected for anthropometric and fitness measures next to cancer-related quality of life.T-tests and Wilcoxon signed ranked tests were used to establish differences pre and post intervention. Cohen's d was also calculated to determine the effect size of the intervention.Results:Statistically significant changes were found for: (i) weight, right and left forearm circumference and hip; (ii) 6 min walking, right and left handgrip, sit-to-stand and sit-and-reach; (iii) the EORTC-QLQ C30 summary score as well as the subscales of emotional and social functioning and symptoms. In all cases the direction of change was positive, while Cohen's d calculated showed that the effect of the intervention for these parameters ranged from intermediate to large.Conclusion:Changes on the above anthropometric, fitness and quality of life measures suggest that the intervention was of value to the participating women recovering from breast cancer. Results also advocate collaborative efforts across countries to further research. (shrink)

The overarching aim of this book is to illuminate a broad array of issues connected with reproduction and ethics through the lens of moral philosophy. With novel frameworks for understanding prenatal moral status and human identity, DeGrazia sheds new light on the ethics of abortion and embryo research, genetic enhancement and prenatal genetic interventions, procreation and parenting, and decisions that affect the quality of life of future generations.

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)

A major programme of irrigated rice extension in the Middle Senegal River Valley has further limited the river’s natural flooding in the floodplain (Waalo), initially reduced by drought. We conducted a transdisciplinary (TD) and gendered study in the region to explore links between agricultural biodiversity and family diets using a social analysis of women’s practices. The results showed how rice expansion impacts local agrobiodiversity, diet quality and the cultural way of life. Disappearance of the singular agropastoral and fishing (...) system of the Senegal River Valley is profoundly modifying the landscape, limiting wooded riverine settings, and is undermining the traditional diversified flood-recession cropping system in the Waalo. This is causing an overconsumption of rice by reducing alternative food sources, such as sorghum, vegetables and animal products (fish, milk and meat). In particular, flood-recession sorghums are in danger of disappearing, yet they are more nutritious than rice and now sell for twice as much, or more. The way of life is being disrupted, notably sociabilities previously based on territorial complementarities, and women are disadvantaged in terms of recognition and added workload. Women’s groups have launched collective irrigated gardens, organic or not, only supported by the local NGO, but any surplus is hardly ever sold on the weekly markets in the neighbourhood. Moreover, this diet imbalance increases nutritional risk factors for health, such as vitamin and iron deficiencies, especially for women, hypertension and diabetes. We argue that, firstly, gendered TD experiences are relevant for documenting women’s activities in order for them to gain political support and, secondly, that targeting women’s care tasks gives more value and impact to TD research results. (shrink)