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Objective This multicentre study aimed to develop a measure of the perception of care dependence in patients diagnosed with cancer and to test its psychometric properties. Methods The questionnaire was developed based on findings emerged from a meta‐synthesis and from qualitative studies conducted in three hospitals in Italy. The draft questionnaire was tested for face and content validity and pilot‐tested with patients. The questionnaire was completed by care‐dependent patients with cancer. Test‐retest was conducted to verify stability. Exploratory factor analysis (EFA) was performed using a Maximum Likelihood robust estimator. Results and conclusion The Scale‐Content Validity Index was 0.92. The final 15‐item questionnaire was completed by 208 patients admitted to two hospitals. The EFA yielded a two‐factor model including a positive and a negative perception of care dependence. Factor score determinacy coefficients, Cronbach's alpha coefficients, composite reliability coefficients and Intraclass Correlations Coefficients yielded satisfactory results confirming internal consistency and stability. The hedonic balance score is also available as a single indicator of subjective well‐being. The study provides initial validation of the Care DEeP Questionnaire that can be used by cancer nurses to assess positive and negative patient experiences with care dependence and to personalise and improve their care.

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Oral presentation as an invited speaker at the 5th Nurses Research Study Day of the European Society for Blood and Marrow Transplantation (EBMT), virtual.
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Purpose Patients with advanced cancer are likely to face increasing levels of care dependence. Adult patients who become care dependent on others can experience this condition as one of suffering and humiliation. The nurse-patient relationship plays a key role in the experience of dependence. Understanding patients’ and nurses’ perceptions of care dependence is crucial to addressing the impact it has on the lives of both. The aim of this study is to explore the experiences of patients with cancer and nurses caring for them. Methods A multicentre qualitative study was conducted in Italy using semi-structured interviews with patients with advanced cancer admitted to 3 hospitals, and 9 focus groups with nurses working in oncology wards of 2 hospitals. Data were analysed with inductive content analysis. Results Thirty-two patients and 44 nurses participated in the study. Three common themes were identified: within dependence, the relationship is a lifeline; dependence is influenced by internal and external factors and dependence generates changes. Dependence impacts on patients’ and nurses’ lives and implies a process of personal maturing for both. Patients learn the humility to ask for help by exposing their vulnerability. Nurses become aware that a trusting relationship helps patients to accept dependence, and they learn to self-transcend in order to build it. Conclusions Striving to build positive relationships implies a change in nurses’ and patients’ lives. In this way, they come to understand important aspects of life and find meaning in difficult situations. Further studies should explore also homecare settings and patients’ families.
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Background: Understanding the perceptions regarding what constitutes a "good death" among cancer patients and their families could help healthcare teams to ensure proper palliative and supportive care. Objectives: To demonstrate and compare the wishes cancer patients and the perceptions of their relatives regarding end-of-life care, and to identify factors associated with patients' preferences regarding place of death. Methods: A sample of cancer patients and their relatives who attended the Srinagarind Hospital (Thailand) oncology clinic or day chemotherapy from September 2017 to August 2018 were enrolled. Questionnaires were given to the participants, in which the patients were asked to respond based on their own end-of-life preferences, and relatives were asked to imagine how the patients would respond to the questions. Results: One hundred eighty pairs of patients and relatives were recruited. Respondents in both groups placed importance on place of death, relationship with family, physical and psychological comfort, and relationship with the medical staff. Both groups generally agreed with the statements on the questionnaire (10/13 statements). Relatives underestimated the preferences of the patients in 3 areas: "not being a burden to others," "preparation for death," and "physical and psychological comfort." Being married (adjusted odds ratio (AOD) 6.4, 95%confidence interval (CI) 1.1,36.5), having had more than 6 years of education (AOD 6.5, 95%CI 1.8,23.7), having lung cancer compared to colon cancer (AOD 12, 95%CI 1.2,118.7), duration after cancer diagnosis (AOD 0.9, 95%CI 0.93,0.99), previous hospital admission (AOD 5.7, 95%CI 1.5,21.2), and life satisfaction (AOD 17.6, 95%CI 2.9,104.9) were factors associated with preference for home death. Conclusion: Thai cancer patients and their relatives indicated similar preferences with regard to what constitutes a good death and patients' wishes for their end-of-life period. However, the patients' relatives underestimated the importance patients placed on statements in three domains. Factors that influenced a preference for a home death were identified.
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The number of cancer survivors continues to increase in the United States because of the growth and aging of the population as well as advances in early detection and treatment. To assist the public health community in better serving these individuals, the American Cancer Society and the National Cancer Institute collaborate every 3 years to estimate cancer prevalence in the United States using incidence and survival data from the Surveillance, Epidemiology, and End Results cancer registries; vital statistics from the Centers for Disease Control and Prevention's National Center for Health Statistics; and population projections from the US Census Bureau. Current treatment patterns based on information in the National Cancer Data Base are presented for the most prevalent cancer types. Cancer‐related and treatment‐related short‐term, long‐term, and late health effects are also briefly described. More than 16.9 million Americans (8.1 million males and 8.8 million females) with a history of cancer were alive on January 1, 2019; this number is projected to reach more than 22.1 million by January 1, 2030 based on the growth and aging of the population alone. The 3 most prevalent cancers in 2019 are prostate (3,650,030), colon and rectum (776,120), and melanoma of the skin (684,470) among males, and breast (3,861,520), uterine corpus (807,860), and colon and rectum (768,650) among females. More than one‐half (56%) of survivors were diagnosed within the past 10 years, and almost two‐thirds (64%) are aged 65 years or older. People with a history of cancer have unique medical and psychosocial needs that require proactive assessment and management by follow‐up care providers. Although there are growing numbers of tools that can assist patients, caregivers, and clinicians in navigating the various phases of cancer survivorship, further evidence‐based resources are needed to optimize care.
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Background Population aging is a common demographic pattern in developed countries, and aging increases the risk of cancer. The disproportionately high cancer burden, as a consequence, is especially pronounced in Central and Eastern European countries, including Hungary. Methods We summarized current and projected future cancer incidences and mortalities utilizing data from the last two decades. Predictions are based on cancer incidence and mortality collected between 1996 and 2015 in Hungary. In addition to the crude rates, data were age standardized to the European standard population (ESP) of 2013, ESP of 1976, and local census of 2011. Results The lifetime probability of developing cancer and cancer-related mortality has already reached 56.9% and 27.6% in men, respectively, and 51.9% and 21.7% in women. Between 2016 and 2030, the total population is expected to shrink by 6%, while the number of 60-year olds and above will grow by 18%. This will lead to a 35% increase in cancer incidence and 30% increase in cancer death among 65–85-year olds. Joinpoint regression identified the period 2007–2015 as starting point for this coming increase in new cases. In women, lung and breast cancer will increase yearly by 1.9% and 1.7%, respectively, between 2016 and 2030, while in men, the prostate and colorectal cancer rates will increase yearly by 3.6% and 2.1%. Conclusion In the aging population of Hungary, cancer incidence will increase considerably over previous projections. Although a large portion of the most rapidly rising cancers are avoidable by implementing public health programs, a substantial portion remains inevitably incurable.
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Objective: Refl ect on the essence of care in health vulnerability from the phenomenological perspective of Martin Heidegger. Method: Theoretical-refl exive study, anchored in three essential parts: 1) Care in Heidegger; 2) The essence of care in health vulnerability; And 3) Nursing care actions on health vulnerability. Results: Vulnerability must be recognized as an indelible trait of the human condition and has its constituents in the human being, co-presence and care. Caring is an interactive process that reveals itself in the relationship with the other. Respecting the integrity of the Being in vulnerability must be a priority in nursing care, through behaviors that privilege the Being. Conclusion: Understanding ontological care and its relation to vulnerability under Heidegger’s phenomenological view allowed us to uncover the facets of care in health vulnerability by adding to the nursing knowledge body a comprehensive and refl ective perspective. Descriptors: Health Vulnerability; Philosophy, Nursing; Hermeneutics; Comprehensive Health Care; Nursing Care.
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This investigation tested (linear and non-linear) cross-sectional and cross-time associations between irrational beliefs, hedonic balance and academic achievement. In total, 175 undergraduate students (Mage = 20.23 ± 5.06 years) completed measures of irrational beliefs and hedonic balance at mid-semester and again before their end of semester examinations. Student academic grades were obtained from a university electronic management package. Results showed that higher levels of irrational beliefs (depreciation) were associated with a more negative affective state at mid-semester and increases in negative affect (relative to positive affect) over time. Increases in irrational beliefs (depreciation and awfulising) also coincided with increases in negative (relative to positive) affect. Irrational beliefs and hedonic balance were unrelated to academic performance. In short, this study provides evidence that irrational beliefs are related to change in student affect over time, but that irrational beliefs and hedonic balance are unrelated to objectively measured academic achievement.
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According to the most important theories of justice, personal dignity is closely related to independence, and the care that people with disabilities receive is seen as a way for them to achieve the greatest possible autonomy. However, human beings are naturally subject to periods of dependency, and people without disabilities are only 'temporarily abled'. Instead of seeing assistance as a limitation, we consider it to be a resource at the basis of a vision of society that is able to account for inevitable dependency relationships between 'unequals' ensuring a fulfilling life both for the carer and the cared for.
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• This paper describes the results of a study determining construct validity aspects of the Nursing Care Dependency (NCD) Scale. • This 15-item instrument has been developed recently for the assessment of the care dependency of dementia or learning-disabled inpatients. • Data was collected for 450 dementia and 203 learning-disabled patients using the NCD instrument. • Factor analysis of the NCD instrument resulted in one Factor. With Mokken scale analysis an H-coefficient of 0.75 was found, which implied a strong hierarchical scale. • Cronbach's α coefficients (0.97) were high enough to use the NCD instrument in clinical practice, at both group and individual levels.
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Book
This book examines the most recent advances in methodology and operations as well as the technical developments in international survey research. With contributions from a panel of international experts, the text includes information on the use of Big Data in concert with survey data, collecting biomarkers, the human subject regulatory environment, innovations in data collection methodology and sampling techniques, use of paradata across the survey lifecycle, metadata standards for dissemination, and new analytical techniques.
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Background: Dependence is a common life experience and innate condition for human beings due to their bodily and relational essence, but in contemporary society, it has become a stressful condition. Care dependence is central to nursing, and patients with advanced cancer are often dependent on care. Understanding nurses' perceptions of care dependence can contribute to awareness of the impact it has on nurses. Objective: The aim of this study was to explore palliative care nurses' experiences and perceptions regarding patient dependence. Methods: Sixteen nurses taking care of dependent patients in a palliative care center in Rome were interviewed. Giorgi's descriptive phenomenological method was used. Results: Nurses caring for dependent patients transcend the boundaries of dependence. Care dependence is an experience of powerlessness and regression. A patient's life in dependence is precarious, as they have to overcome the daily limits of life. Taking care of dependent patients requires nurses to manage the unmanageable and to know and to embrace change from within in order to build positive relations of personal closeness and reciprocal self-giving. Conclusions: Nurses should be aware that self-transcendence and the consequent positive relations could make the difference in the experience of care dependence and promote personal growth for both patient and nurse. Positive and transcending relationships can transform care dependence into the opportunity to find meaning and purpose in life. Implications for practice: The study highlights what nurses feel in caring for dependent patients. Understanding nurses' perceptions is important to delineate a proper caring for dependent patients.
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The assessment of content validity is a critical and complex step in the development process of instruments which are frequently used to measure complex constructs in social and administrative pharmacy research. The aims of this study were to investigate the elements of content validity; to describe a practical approach for assessing content validity; and to discuss existing content validity indices. This is a narrative review of the assessment and quantification of content validity. It describes the key stages of conducting the content validation study and discusses the quantification and evaluation of the content validity estimates. Content validity provides evidence about the degree to which elements of an assessment instrument are relevant to and representative of the targeted construct for a particular assessment purpose. The assessment of content validity relies on using a panel of experts to evaluate instrument elements and rate them based on their relevance and representativeness to the content domain. It is a three-stage process that includes; the development stage, judgment and quantifying stage, and revising and reconstruction stage. To quantify the expert judgments, several indices have been discussed in this paper such as the content validity ratio (CVR), content validity index (CVI), modified-Kappa, and some agreement indices. A practical guide describes the process of content validity evaluation is provided. In summary, content validation processes and content validity indices are essential factors in the instrument development process, should be treated and reported as important as other types of construct validation. Determining item CVI and reporting an overall CVI are important components necessary to instruments especially when the instrument is used to measure health outcomes or to guide a clinical decision making. Content validity deserves a rigorous assessment process as the obtained information from this process are invaluable for the quality of the newly developed instrument.
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The factor score determinacy coefficient represents the common variance of the factor score predictor with the corresponding factor. The aim of the present simulation study was to compare the bias of determinacy coefficients based on different estimation methods of the exploratory factor model. Overall, determinacy coefficients computed from parameters based on maximum likelihood estimation, unweighted least squares estimation, and principal axis factoring were more precise than determinacy coefficients based on generalized least squares estimation and alpha factoring.
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The number of cancer survivors continues to increase because of both advances in early detection and treatment and the aging and growth of the population. For the public health community to better serve these survivors, the American Cancer Society and the National Cancer Institute collaborate to estimate the number of current and future cancer survivors using data from the Surveillance, Epidemiology, and End Results cancer registries. In addition, current treatment patterns for the most prevalent cancer types are presented based on information in the National Cancer Data Base and treatment-related side effects are briefly described. More than 15.5 million Americans with a history of cancer were alive on January 1, 2016, and this number is projected to reach more than 20 million by January 1, 2026. The 3 most prevalent cancers are prostate (3,306,760), colon and rectum (724,690), and melanoma (614,460) among males and breast (3,560,570), uterine corpus (757,190), and colon and rectum (727,350) among females. More than one-half (56%) of survivors were diagnosed within the past 10 years, and almost one-half (47%) are aged 70 years or older. People with a history of cancer have unique medical and psychosocial needs that require proactive assessment and management by primary care providers. Although there are a growing number of tools that can assist patients, caregivers, and clinicians in navigating the various phases of cancer survivorship, further evidence-based resources are needed to optimize care. CA Cancer J Clin 2016. © 2016 American Cancer Society.
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Answer questions and earn CME/CNE Comorbidity is common among cancer patients and, with an aging population, is becoming more so. Comorbidity potentially affects the development, stage at diagnosis, treatment, and outcomes of people with cancer. Despite the intimate relationship between comorbidity and cancer, there is limited consensus on how to record, interpret, or manage comorbidity in the context of cancer, with the result that patients who have comorbidity are less likely to receive treatment with curative intent. Evidence in this area is lacking because of the frequent exclusion of patients with comorbidity from randomized controlled trials. There is evidence that some patients with comorbidity have potentially curative treatment unnecessarily modified, compromising optimal care. Patients with comorbidity have poorer survival, poorer quality of life, and higher health care costs. Strategies to address these issues include improving the evidence base for patients with comorbidity, further development of clinical tools to assist decision making, improved integration and coordination of care, and skill development for clinicians. CA Cancer J Clin 2016;66:337‐350. © 2016 American Cancer Society.
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The success of the Apgar score demonstrates the astounding power of an appropriate clinical instrument. This down-to-earth book provides practical advice, underpinned by theoretical principles, on developing and evaluating measurement instruments in all fields of medicine. It equips you to choose the most appropriate instrument for specific purposes. The book covers measurement theories, methods and criteria for evaluating and selecting instruments. It provides methods to assess measurement properties, such as reliability, validity and responsiveness, and interpret the results. Worked examples and end-of-chapter assignments use real data and well-known instruments to build your skills at implementation and interpretation through hands-on analysis of real-life cases. All data and solutions are available online. This is a perfect course book for students and a perfect companion for professionals/researchers in the medical and health sciences who care about the quality and meaning of the measurements they perform. © H. C. W. de Vet, C. B. Terwee, L. B. Mokkink and D. L. Knol 2011.
Article
Care dependence can be associated with suffering and humiliation. Nurses' awareness of patients' perception of care dependence is crucial to enable them in helping the dependent persons. This study aimed to describe adult patients' experience of nursing care dependence. A metasynthesis was conducted to integrate qualitative findings from 18 studies published through December 2014 on adult patients' experiences of care dependency. Procedures included the Johanna Briggs Institute approach for data extraction, quality appraisal, and integration of findings. The experience of dependence revealed the concept of the embodied person, particularly in relation to care of the physical body. The relationship between the individual and nurses within the context of care had a major impact for dependent patients. When the care relation was perceived as positive, the experience led to the development of the person in finding new balances in life, but when it was perceived as negative, it increased patient' suffering. Care dependence is manifested mostly as bodily dependence and is consistent with its relational nature. The nurse-patient relationship is important to the dependent patients' experience. A greater understanding of patients' experiences of dependence is crucial to enable nurses in improving care and decreasing patient suffering. © 2015 Sigma Theta Tau International.
Article
Increasing burden of cancer in Europe and socio-demographic trends imply that more cancer patients will face high levels of dependency. Care dependency is often perceived as a distressing experience by cancer patients who are concerned about becoming a burden to others. The experience of care dependence has been scarcely investigated in advanced cancer patients, especially in the hospital setting. This study aimed at describing advanced cancer patients' experiences of care dependence in hospital and of the factors perceived by them as contributing to decrease or increase this dependence. The study used a descriptive phenomenological approach based on Husserl's (1913) life world perspective. Data collection and analysis followed Giorgi's (1997) five basic methodological steps. Data were gathered by semi-structured interviews with thirteen advanced cancer adult inpatients of a teaching hospital. The interviews were audio-recorded and the recordings transcribed word for word. Three themes emerged: 'dependency discovers new meanings of life', 'active coping with dependency' and 'the care cures the dependent person'. The essential meaning of care dependency was the possibility to become aware of being a person as both an object and subject of care. Dependence appears as an experience with strong relational connotations, which enable patients to see differently their life, themselves, the world and others. Dependency is revealed as a natural experience, only partly in accordance with previous studies. Deeper insight into the meaning patients attach to care dependency can enable nurses to better meet the patient's needs, e.g. by improving caring relationships with patients. Copyright © 2015 Elsevier Ltd. All rights reserved.
Article
The term 'dignity' is used in a variety of ways but always to attribute or recognize some status in the person. The present paper concerns not the status itself but the virtue of acknowledging that status. This virtue, which Thomas Aquinas calls 'observantia', concerns how dignity is honoured, respected, or observed. By analogy with justice (of which it is a part) observantia can be thought of both as a general virtue and as a special virtue. As a general virtue observantia refers to that respect for human dignity that is implicit in all acts of justice. As a special virtue it concerns the specific way we show esteem for people. Healthcare represents a challenge to observantia because those in need of healthcare are doubly restricted in expressing their dignity in action: in the first place by their ill health, and in the second place by the conditions required by healthcare (hence the sick are termed 'patients' rather than 'agents'). To be understood properly, especially in the context of healthcare, the virtue of observantia needs both to qualify and to be qualified by the virtue of misericordia, empathy, or compassion for affliction. The unity of the virtues requires a simultaneous recognition of the common dignity and common neediness of human existence.
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To provide advanced practice nurses in primary care with information about self-reported functional assessments and physical performance-based functional assessments of geriatric patients living alone within the community at greatest risk of functional decline. Databases searched include CINAHL, Healthsource: Nursing/Academic Edition, MEDLINE, PsycINFO, PsycARTICLES, Cochrane Library, and National Clearinghouse Guidelines. The review was limited to English, research, and the years 2000-2014. Key search words included geriatric, community-dwelling, functional assessment, activities and instrumental activities of daily living, Barthel Index, Katz Index, Lawton Scale, Vulnerable Elders Survey, Timed Up and Go Test, Gait Speed Test, Functional Reach Test, and primary care. Forty-three million individuals, age 65 and older, are currently living in the United States with numbers expected to double by 2050. Nurse practitioners will be at the forefront of assessing for functional decline and can use tools such as the Barthel Index and Gait Speed Test to improve elderly outcomes. Self-reported functional questionnaires and physical functional performance tests can quickly be completed in the office to track the risk of functional decline over time. Interventions, such as physical therapy or other community resources, can be initiated when needed to reduce negative outcomes of functional decline. ©2015 American Association of Nurse Practitioners.
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Knowledge of a scale’s dimensionality is an essential preliminary step to the application of any measure of reliability derived from classical test theory—an approach commonly used is nursing research. The focus of this article is on the applied aspects of reliability and dimensionality testing. Throughout the article, the Self-Care of Heart Failure Index is used to exemplify real-world data challenges of quantifying reliability and to provide insight into how to overcome such challenges.
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Estimates of the worldwide incidence and mortality from 27 major cancers and for all cancers combined for 2012 are now available in the GLOBOCAN series of the International Agency for Research on Cancer. We review the sources and methods used in compiling the national cancer incidence and mortality estimates, and briefly describe the key results by cancer site and in 20 large “areas” of the world. Overall, there were 14.1 million new cases and 8.2 million deaths in 2012. The most commonly diagnosed cancers were lung (1.82 million), breast (1.67 million), and colorectal (1.36 million); the most common causes of cancer death were lung cancer (1.6 million deaths), liver cancer (745,000 deaths), and stomach cancer (723,000 deaths). © 2014 Wiley Periodicals, Inc.
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We provide a comprehensive and user-friendly compendium of standards for the use and interpretation of structural equation models (SEMs). To both read about and do research that employs SEMs, it is necessary to master the art and science of the statistical procedures underpinning SEMs in an integrative way with the substantive concepts, theories, and hypotheses that researchers desire to examine. Our aim is to remove some of the mystery and uncertainty of the use of SEMs, while conveying the spirit of their possibilities. KeywordsStructural equation models–Confirmatory factor analysis–Construct validity–Reliability–Goodness-of-fit
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The literature on subjective well-being (SWB), including happiness, life satisfaction, and positive affect, is reviewed in three areas: measurement, causal factors, and theory. Psychometric data on single-item and multi-item subjective well-being scales are presented, and the measures are compared. Measuring various components of subjective well-being is discussed. In terms of causal influences, research findings on the demographic correlates of SWB are evaluated, as well as the findings on other influences such as health, social contact, activity, and personality. A number of theoretical approaches to happiness are presented and discussed: telic theories, associationistic models, activity theories, judgment approaches, and top-down versus bottom-up conceptions.
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Social cognition research indicates that life-satisfaction judgments are based on a selected set of relevant information that is accessible at the time of the life-satisfaction judgment. Personality research indicates that life-satisfaction judgments are quite stable over extended periods of time and predicted by personality traits. The present article integrates these two research traditions. We propose that people rely on the same sources to form repeated life-satisfaction judgments over time. Some of these sources (e.g., memories of emotional experiences, academic performance) provide stable information that explains the stability in life-satisfaction judgments. Second, we propose that the influence of personality traits on life satisfaction is mediated by the use of chronically accessible sources because traits produce stability of these sources. Most important, the influence of extraversion and neuroticism is mediated by use of memories of past emotional experiences. To test this model, participants repeatedly judged life-satisfaction over the course of a semester. After each assessment, participants reported sources that they used for these judgments. Changes in reported sources were related to changes in life-satisfaction judgments. A path model demonstrated that chronically accessible and stable sources are related to stable individual differences in life-satisfaction. Furthermore, the model supported the hypothesis that personality effects were mediated by chronically accessible and stable sources. In sum, the results are consistent with our theory that life-satisfaction judgments are based on chronically accessible sources.
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Nurse researchers typically provide evidence of content validity for instruments by computing a content validity index (CVI), based on experts' ratings of item relevance. We compared the CVI to alternative indexes and concluded that the widely-used CVI has advantages with regard to ease of computation, understandability, focus on agreement of relevance rather than agreement per se, focus on consensus rather than consistency, and provision of both item and scale information. One weakness is its failure to adjust for chance agreement. We solved this by translating item-level CVIs (I-CVIs) into values of a modified kappa statistic. Our translation suggests that items with an I-CVI of .78 or higher for three or more experts could be considered evidence of good content validity.
Article
The purpose of this study was to describe people's experiences of being dependent on others for care in their final stage of life, as well as what they felt made their experience of being dependent easier or more difficult. The phenomenological-hermeneutical method was chosen, where data collection consisted of open-ended interviews with nine people undergoing palliative care at a hospice unit or at home. The meaning of being care dependent is described via the following themes: changed relationship with oneself and with others, striving to adapt oneself to the situation, obstacles, and opportunities along the way while dependent. The result is described as an effort, a journey from independence to moments where it was possible to rest and recuperate while struggling with care dependency. Nursing staff require knowledge and understanding of experiences with care dependency to make life easier for people during increasing dependency in the final stage of life.
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