“They’re always in a hurry” – Older people´s perceptions of access and recognition in health and social care services

The article examines older people's perceptions of quality of life from the perspective of access and use of health and social care services. The data include focus group discussions with older people living alone. The data were analysed using thematic analysis focusing on the older people's collective views on health and social care services as supportive or restrictive factors for their quality of life. Two central themes were present in all the focus group discussions: the importance of accessing services and information regarding the services, and need for recognition within the services/by the professionals. Both themes were connected to the older people's desire to maintain autonomy in their everyday life despite increasing functional disabilities, which was seen as an important factor of quality of life. The older people felt that accessing and finding information about the services was difficult, and dependent on the professional's good will and the older person's own financial resources. Within the services, older people experienced a lack of recognition of their own personhood and individual needs. The participants felt that they were easily bypassed and left out of negotiations regarding their own care. The article highlights the importance of developing health and social care services and practices towards a more holistic approach recognising older people's individual needs.     

Assisted suicide and its implications for occupational therapy

Many people's lives have been extended by the miracles of modern medicine and technology. However, although the use of these new technologies and drugs may keep people alive longer, the question arises about the quality of that extended life. This paper reviews one physician's apparent preoccupation with assisted suicide in order to introduce the controversy regarding the ethical, moral and legal implications of physician-assisted suicide in the USA. We discuss the arguments in favour of and against assisted suicide in the context of quality of life, individual autonomy versus communal responsibility, and professional autonomy. Occupational therapy, in particular, may be ethically challenged since one can argue that its aim is to help people lead a meaningful and purposeful life despite severe performance deficits. Copyright © 1999 Whurr Publishers Ltd.     

Personal goals and changes in life-space mobility among older people

ObjectiveLife-space mobility – the spatial extent of mobility in daily life – is associated with quality of life and physical functioning but may also be influenced by future orientation expressed in personal goals. The aim of this study was to explore how different personal goals predict changes in older people's life-space mobility.MethodsThis prospective cohort study with a 2-year follow-up included 824 community-dwelling people aged 75 to 90 years from the municipalities of Jyväskylä and Muurame in Central Finland. As part of the Life-Space Mobility in Old Age study (LISPE), which was conducted between 2012 and 2014, the participants responded to the Life-Space Assessment and Personal Project Analysis in addition to questions on socio-demographics and health. Data were analyzed using generalized estimation equation models.ResultsThe results showed that goals indicating a desire to be active in daily life, to stay mentally alert, and to exercise were associated with higher life-space mobility, and that the associations remained over the follow-up years. Goals related to maintaining functioning predicted higher life-space mobility at the 2-year follow-up. In contrast, goals reflecting improvement of poor physical functioning predicted lower life-space mobility. The results remained significant even when adjusted for indicators of health and functioning.ConclusionsThis study indicates that supporting older people in striving for relevant personal goals in their lives might contribute to a larger life-space and thus also to improved quality of life in old age.     

Knowledge for the good of the individual and society: linking philosophy,disciplinary goals,theory, and practice

Nursing as a profession has a social mandate to contribute to the good of society through knowledge‐based practice. Knowledge is built upon theories, and theories, together with their philosophical bases and disciplinary goals, are the guiding frameworks for practice. This article explores a philosophical perspective of nursing's social mandate, the disciplinary goals for the good of the individual and society, and one approach for translating knowledge into practice through the use of a middle‐range theory. It is anticipated that the integration of the philosophical perspective and model into nursing practice will strengthen the philosophy, disciplinary goal, theory, and practice links and expand knowledge within the discipline. With the focus on humanization, we propose that nursing knowledge for social good will embrace a synthesis of the individual and the common good. This approach converges vital and agency needs described by Hamilton and the primacy of maintaining the heritage of the good within the human species as outlined by Maritain. Further, by embedding knowledge development in a changing social and health care context, nursing focuses on the goals of clinical reasoning and action. McCubbin and Patterson's Double ABCX Model of Family Adaptation was used as an example of a theory that can guide practice at the community and global level. Using the theory‐practice link as a foundation, the Double ABCX model provides practising nurses with one approach to meet the needs of individuals and society. The integration of theory into nursing practice provides a guide to achieve nursing's disciplinary goals of promoting health and preventing illness across the globe. When nursing goals are directed at the synthesis of the good of the individual and society, nursing's social and moral mandate may be achieved.     

Quality of life in cancer patients: The role of optimism,hopelessness, and partner support

The interaction of optimism, hopelessness and social support as predictors of Health-Related Quality of Life (HRQL) among seriously ill people is not well understood. Also, the impact of partner characteristics on patient quality of life has often been overlooked. In this study the relationships between optimism, hopelessness, partner support and HRQL were investigated in 155 cancer patients and their partners. Special attention was given to the effects of optimism and hopelessness as mediators and moderators in the partner support–HRQL relationship. The impact of partner optimism and hopelessness on perceived partner support and patient HRQL was also studied. The results indicated substantial gender differences in the relationships between the study variables. High levels of partner support were associated with female patients’ optimistic appraisals, and together they predicted better HRQL at 8 months follow-up. Partial support was found for the effect of optimism as a mediator. For male patients, low hopelessness was the key variable predicting good HRQL. Clear evidence for the moderator effects of optimism/hopelessness was not found, and the expected impact of partner’s characteristics on partner support or patient HRQL could not be confirmed. Although partner support, patient optimism and hopelessness all appeared to be important determinants of HRQL in cancer patients, the relationships between these variables differed by gender. The proposed mediation and moderation models needs to be confirmed in future studies.     

Hunting for health,well-being,and quality of life

Health, well-being, quality of life, and lifestyle are central concepts within health science, although generally accepted definitions are still lacking. Lifestyle can either be seen as an independent variable and the cause of unhealthy behaviour or as a dependent variable, which is affected by conditions in the society. In the first case, the attention is directed on each individual case: maintaining or improving health requires changes in lifestyle and living habits. In this perspective, diet and physical activity are important features for health promotion. In the second case the attention is rather directed on structural conditions in society, for example the food industry, the lunches for children at school, and the “fast food” industry should be influenced to protect human health. The structural perspective has, so far, received restricted impact when it concerns prevention and promotion of health. Processes of individualisation in the society have to an increasing extent viewed health as an affair for the individual. The benefits of physical activity, healthy food and beverage, social support, and joy are documented scientifically. In general, the trend towards increasing responsibility for one''s lifestyle and health is positive, but might reinforce the inequality in health. With an even harder climate in society there might be a risk that individual health projects undermine the solidarity and the will to accept costs for medical treatment and care for people who risk their health through an unhealthy and risk-taking lifestyle. However, we argue that peoples’ well-being and quality of life presupposes a society that stands up for all people.     

A model of consensus formation for reconciling nursing's disciplinary matrix

With questions raised as to whether or not nursing knowledge should be developed from extant conceptual/theoretical models or from practice‐based environments, this paper utilizes Kuhn's disciplinary matrix and Laudan's model of consensus formation to explore the changing nature of the discipline's structural matrix. Kuhn's notion that a discipline's structural matrix includes symbolic generalizations, models and exemplars, and Laudan's view that a maturing discipline embraces factual, methodological, and axiological (goals and aims) knowledge, and that context and discourse are also involved in advancing a discipline is described as a means for reconciling the source of nursing knowledge. This paper posits that shared axiological goals connect both theorists and practitioners, and resolve potential conflicts as to viable sources of nursing knowledge. Through shared goals that include humanization, meaning, quality of life, caring, consciousness, transcendence, and presence, which bridge both theoretical and practice approaches, nursing's charge to contribute to the good of society is fulfilled.     

医学研究生完美主义和睡眠质量相关性分析

完美主义是一种人格特质或是一种认知方式,国内外各种对完美主义的研究表明,人体的心理健康和生理健康或多或少都会受到完美主义的影响,完美主义对人们的日常生活具有重大意义。睡眠是人们日常生活中必不可少的部分,因此完美主义与睡眠质量之间有关联。本研究采用问卷调查法,使用中文 Frost 多维度完美主义问卷、匹兹堡睡眠质量指数为工具,以天津市三所医学高等院校的95名医学研究生为被试者,探讨医学研究生完美主义和睡眠质量的关系。得出结论：医学研究生的完美主义与睡眠质量呈正相关。根据医学研究生的完美主义倾向,采取一定的方法提高医学研究生的睡眠质量具有重要意义。     

Social support and quality of life

Social support is a broad term, which includes the supportive ways that different people behave in the social environment. Structural measures of the environment deal with the mere existence of social relationships. Functional measures refer to the resources that people within an individual's social network provide. Structural support shows a linear relation to quality of life; the functional aspects of support demonstrate the stress-buffering hypothesis. One of the main focuses of this article is to help researchers determine what aspects of social relationships or what types of support need to be measured and to consider the mechanisms by which support might influence quality of life. Also addressed is how to translate the correlational research on social support and quality of life into the field of support interventions, taking into account individual and situational differences.     

Palliative care for people with Alzheimer's disease

Abstract The task of aligning the philosophical and clinical perspectives on ethics is a challenging one. Clinical practice informs philosophy, not merely by supplying cases, but through shaping and testing philosophical concepts in the reality of the clinical world. In this paper we explore several aspects of the relationship between the philosophical and the clinical within a framework of palliative care for people living with Alzheimer's disease. We suggest that health professionals have a moral obligation to question previous assumptions concerning the quality of life among people with Alzheimer's, and to address the question: does the concept of palliative care properly embrace people with severe dementia? We propose an ethic of palliative care for people with Alzheimer's that is based, not on the traditionally understood principle of autonomy, but on the need to listen to those living with the disease, acknowledging their profound loss of cognitive abilities, with a focus on preventing and relieving suffering, and improving the individual's quality of life.     

Saving lives versus life‐years in rural Bangladesh: an ethical preferences approach

Using a random sample of individuals in rural Bangladesh, this paper investigates people's ethical preferences regarding relative values of lives when it comes to saving lives of individuals of different ages. By assuming that an individual has preferences concerning different states of the world, and that these preferences can be described by an individual social welfare function, the individuals' preferences for life‐saving programs are elicited using a pair‐wise choice experiment involving different life‐saving programs. In the analyses, we calculate the social marginal rates of substitution between saved lives of people of different ages. We also test whether people have preferences for saving more life‐years rather than only saving lives. In particular, we test and compare the two hypotheses that only lives matter and that only life‐years matter. The results indicate that the value of a saved life decreases rapidly with age and that people have strong preferences for saving life‐years rather than lives per se. Overall, the results clearly show the importance of the number of life‐years saved in the valuation of life. Copyright © 2010 John Wiley & Sons, Ltd.     

The national implementation of 'Proactive Health Support' in Denmark since 2017: Expectations and challenges for the telephone-based self-management program

In Denmark, as in many other Western countries, a small group of people are major hospital users and account for a large proportion of health care spending. Proactive Health Support (PaHS) is the first national Danish program that aims to reduce health care consumption targeting people at risk of becoming major users of health services. PaHS was part of the government's The sooner—the better national health policy, which includes a focus on policy programs targeting the weakest and most complex chronic patients at risk of high health care consumption. PaHS is a telephone-based self-management support program that uses a prediction model to identify people at high risk of acute hospital admissions. Reducing preventable hospital admissions and enhancing quality of life are central policy goals. The Danish policy was inspired by a Swedish policy program, and PaHS has been implemented based on policy transfer with political expectations that the Swedish results can be replicated in Denmark. The effects of PaHS are currently under study, and time will show whether expectations can be met. This paper discusses institutional conditions and expectations related to replicating a policy program and its outcomes. In addition, it highlights implementation issues that may affect the success of the policy program.     

Optimism, pessimism and the compensating income variation of cardiovascular disease: a two-tiered quality of life stochastic frontier model

Self-reported measures of life satisfaction may be biased by optimistic or pessimistic dispositions of respondents. In this paper we view life satisfaction as stochastic and estimate a two-tiered quality of life stochastic frontier model to account for upward and downward biases in self-reported quality of life questions. Using the British Household Panel Survey 1995, we interpret the two one-sided errors to represent optimism and pessimism, respectively. The results suggest that the realistic values of life satisfaction are closer to the pessimistic values than to the optimistic ones. It is further found that men are relatively more optimistic and less pessimistic than women. Cardiovascular disease makes people both less optimistic and less pessimistic. The results are used to calculate the compensating income variation (CIV) of cardiovascular disease. It is found that the CIV is substantial.     

Autonomy,Well-Being,and the Value of Genetic Testing for Adopted Persons

This paper argues that the value of genetic-relative family health history (GRFHx) information and the notion that lack of this information is a disadvantage can be established through its role as a nested goal in comprehensive life projects independent of documentation of particular health outcomes. Health information often plays a significant role in a person's formulation of life goals and projects, as well as in identification of plausible effective means to realize these goals. If health outcomes are valuable in part because of the nested role these play in the successful realization of a person's life projects and goals, then other, similarly nested contributors to such success must also be valued on a similar scale. Some of these other contributors to a successful life may themselves be nested with health considerations, as illustrated in the relationship that will be the focus of this paper. Health information --independent of outcomes per se – influences relationships, reproduction, and the formulation of plausible comprehensive life goals in intricate and very influential ways. Although such information may be valued in part because it is predictive of health outcomes, this relationship does not reduce such information, nor the comprehensive life goals and projects such information promotes, to health outcomes. That is, while health status can both enhance and detract from the autonomous (successful) pursuit of life projects formulated in the context of health information, the value and weight of these projects is independent of particular health status or outcomes, even while in part shaped by them.     

Contemporary Chinese parents’ socialization priorities for preschoolers: a mixed methods study

This mixed methods study focused on the socialization goals for preschool-aged children among parents from three small-sized cities located in northeastern China. A total of 154 parents with preschool-aged children completed questionnaires measuring parental socialization goals for children's social-emotional competence and academic achievement. Quantitative results showed that parents generally placed more importance on children's social-emotional skills than academic skills. Ten mothers were selected from the sample and participated in a semi-structured qualitative interview to help understand reasons for parents’ prioritization of social-emotional well-being over academic performance. Four themes emerged, including parents’ concerns about children's psychological well-being under excessive academic pressure, their desires to ‘protect’ children's childhood, their awareness of children's individual differences in intelligence and talent in learning, and their belief that good grades did not guarantee future success in life. Our findings highlight the importance of using mixed methods to deepen understanding of contemporary Chinese parents’ child-rearing ideologies.     

An exploration of parents' and young people's perspectives of hospice support

Background Hospices are an important component of children's palliative care provision and increasing numbers of children/young people with life‐limiting conditions mean that the demand placed on them for support is likely to increase. However, there has been a lack of published research examining how families experience the support provided by children's hospices. Methods The aim of the study was to investigate parents' and young people's perceptions of hospice support and identify how support could be improved. A mixed‐method approach was used involving a postal survey of families and in‐depth qualitative interviews with a purposively sampled subsample of parents and young people. Results A total of 108 (49.8% response rate) questionnaires were returned and interviews were conducted with 12 parents and seven young people. Families were highly satisfied with the support provided in terms of quality of care; interpersonal qualities of the staff; the individualized, family‐focused approach; accessibility of support and involvement in decision making. Young people valued the opportunity to meet with other young people and take part in different activities. For parents the provision of a break from caring was the main way in which they were supported although they felt they wanted more of this form of support. A consistent theme in relation to support for young people and siblings was the need to develop facilities, activities and bereavement support specifically for teenagers/young people. Conclusions Parents value a model of care that provides holistic, family‐focused support that is responsive to individual needs and which promotes control and active involvement in decision making. The key challenge now is to respond to increasing need and a changing population of users.     

Narratives of risk: Women at midlife,medical 'experts' and health technologies

The 'management' of midlife women's bodies is becoming an increasingly important focus for both themselves and medical 'experts'. Health technologies play a major part in this process, given health promotion messages about their usefulness for maintaining and enhancing the quality of life. But how do individual women interpret such messages? This paper explores the factors that impact upon health decision making in relation to a group of these technologies. In particular, we examine how related risks are assessed by women themselves and jointly with health professionals, in the clinical context. Drawing upon literature from the sociology of the body and embodiment, debates about risk and feminist research on the menopause, we argue that midlife needs to be understood as an embodied experience and that women's decisions about technology-based health interventions need to be contextualised. The paper draws upon research data from interviews with individual women and health professionals, and recordings of clinical consultations which relate to the specific technologies of HRT, bone densitometry and breast screening. The data reveal the emergence of two major risk narratives within consultations and interviews, health risks and social risks. We conclude that the health decisions and practices of both lay women and health professionals reflect a complex mixture of expert knowledge and advice, and embodied cultural experience.     

The relationship between building design and residents’ quality of life in extra care housing schemes

Well-designed housing is recognised as being an important factor in promoting a good quality of life. Specialised housing models incorporating care services, such as extra care housing (ECH) schemes are seen as enabling older people to maintain a good quality of life despite increasing health problems that can accompany ageing. Despite the variation in ECH building design little is known about the impact of ECH building design on the quality of life of building users. The evaluation of older people’s living environments (EVOLVE) study collected cross-sectional data on building design and quality of life in 23 ECH schemes in England, UK. Residents’ quality of life was assessed using the schedule for the evaluation of individual quality of life-direct weighting (SEIQoL-DW) and on the four domains of control, autonomy, self-realisation and pleasure on the CASP-19. Building design was measured on 12 user-related domains by means of a new tool; the EVOLVE tool. Using multilevel linear regression, significant associations were found between several aspects of building design and quality of life. Furthermore, there was evidence that the relationship between building design and quality of life was partly mediated by the dependency of participants and scheme size (number of living units). Our findings suggest that good quality building design in ECH can support the quality of life of residents, but that designing features that support the needs of both relatively independent and frail users is problematic, with the needs of highly dependent users not currently supported as well as could be hoped by ECH schemes.     

Conducting public involvement in dementia research: The contribution of the European Working Group of People with Dementia to the ROADMAP project

BackgroundDementia outcomes include memory loss, language impairment, reduced quality of life and personality changes. Research suggests that outcomes selected for dementia clinical trials might not be the most important to people affected.ObjectiveOne of the goals of the ‘Real world Outcomes across the Alzheimer''s Disease spectrum for better care: Multi‐modal data Access Platform’ (ROADMAP) project was to identify important outcomes from the perspective of people with dementia and their caregivers. We review how ROADMAP''s Public Involvement shaped the programme, impacted the research process and gave voice to people affected by dementia.DesignThe European Working Group of People with Dementia (EWGPWD) were invited to participate. In‐person consultations were held with people with dementia and caregivers, with advance information provided on ROADMAP activities. Constructive criticism of survey content, layout and accessibility was sought, as were views and perspectives on terminology and key concepts around disease progression.ResultsThe working group provided significant improvements to survey accessibility and acceptability. They promoted better understanding of concepts around disease progression and how researchers might approach measuring and interpreting findings. They effectively expressed difficult concepts through real‐world examples.ConclusionsThe role of the EWGPWD in ROADMAP was crucial, and its impact was highly influential. Involvement from the design stage helped shape the ethos of the programme and ultimately its meaningfulness.Public contributionPeople with dementia and their carers were involved through structured consultations and invited to provide feedback on project materials, methods and insight into terminology and relevant concepts.     

Self‐management abilities and quality of life among frail community‐dwelling individuals: the role of community nurses in the Netherlands

The objective of the study was to determine whether community nurses in the Netherlands improve self‐management abilities and quality of life of frail community‐dwelling people. This longitudinal study was performed in the context of a larger evaluation study of the ‘Zichtbare Schakels’(Visible Link) programme, conducted to determine the quality of care provided by community nurses to community‐dwelling frail people in Rotterdam, the Netherlands. For the current study, clients seen by community workers in Rotterdam between July 2013 and November 2014 participated. Data were gathered via personal interviews by the community nurses as part of care delivery at the start (T0; n = 220) and end of care delivery (T1; n = 111 – the remaining 109 clients were still receiving care) to evaluate and improve quality of care. We measured client's quality of life (using the EQ5D), self‐management abilities (using the Self‐Management Ability Scale) and background characteristics. Results showed that clients seen by the community nurses especially experience problems when it comes to usual activities and pain/discomfort. Furthermore, quality of life was much worse among clients of the community nurses (0.51) than among frail older (aged ≥70 years) people in Rotterdam (0.61), Dutch patients with chronic illnesses [CVD (0.83), COPD (0.79) or diabetes (0.83)] and older (aged ≥65 years) people who had recently been hospitalised (0.80). Significant improvements were seen in client's self‐management and quality of life over time. Self‐management abilities at T0 and changes in self‐management abilities (T1 – T0) clearly predicted quality of life at T1. Investing in community health nurses may be beneficial for the improvement of self‐management abilities and quality of life among very frail people in the community.