This study assessed self-reported health-related quality of life and psychological adjustment in 43 adolescents and young adults with congenital melanocytic nevi and examined associations with sociodemographic variables, characteristics of the CMN, perceived social reactions, and cognitive emotion regulation strategies. Outcome measures included the Pediatric Quality of Life Inventory™ 4.0 and the Strengths and Difficulties Questionnaire. Findings suggest impaired psychosocial health and psychological adjustment in youth with CMN compared to community norms. Impairments were associated with higher age (...) of participants, lower socioeconomic status, visibility of the skin lesion, perceived stigmatization, poorer perceived social support, and maladaptive cognitive emotion regulation strategies, but not with sex of participants, extent of the skin lesion, and surgical removal of the nevus. Implications for clinical practice and future research are discussed. (shrink)

ObjectiveThis study aims to investigate the lived experience in patients with obstructive sleep apnea syndrome and comorbid obesity following after continuous positive airway pressure therapy made with the disease the device, and to identify barriers and facilitators to the use of CPAP to improve rehabilitation provision and aid in disease self-management.MethodsQualitative research was conducted using three focus groups with a representative sample of 32 inpatients undergoing a 1-month pulmonary rehabilitation program at the IRCSS Istituto Auxologico Italiano San Giuseppe Hospital, Verbania, (...) Italy. The focus groups were recorded on tape, and contemporaneous notes were made. The tapes were transcribed verbatim, and Interpretative Phenomenological Analysis was used to develop themes.ResultsSix main themes were extracted: Living the diagnosis as a shock; You should not sleep on it: the importance of prevention; The adjustment to CPAP; Barriers and facilitators to the use of CPAP; Three in a bed; and The relationship with the healthcare system.ConclusionResults of this study suggest potential avenues for interventions to increase adherence to CPAP, including the provision of information and continued support. Individual counseling providing strategies aimed at helping the person to cope with the emotional problem and relational difficulties associated with the use of CPAP, and at strengthening self-efficacy and self-management skills are also encouraged for optimal care during the rehabilitation program. (shrink)

There is growing international interest in the choice of socioeconomic indicators for health research. This study used a combination of standard and novel methods to compare three occupation-based measures of social position in terms of their ability to explain variation and measure inequality in self-assessed health. The recently developed National Statistics Socioeconomic Classification (NS-SEC) is compared with its predecessor, the Registrar General64 living in private households in Scotland, logistic regression models are used to compare the classifications' ability to (...) predict self-assessed health. Concentration indices are estimated to compare how well they capture inequality in self-assessed health. The study shows that all three classifications are strongly associated with self-assessed health, though the associations are heavily attenuated by adjustment for one another and for other measures of social position. Despite their differing theoretical bases, the three are closely related. No evidence is found that any of them systematically under- or overstate the extent of inequality in self-assessed health in either men or women, and the extent to which they measure independent dimensions of social inequality is questioned. It is concluded that the availability of the new classifications is unlikely to transform our understanding of the extent or the causes of socioeconomic inequality in health, but provides useful opportunities for sensitivity analysis. (shrink)

BackgroundThe Mental Capacity Act was enacted in 2007 in England and Wales, but the assessment of mental capacity still remains an area of professional concern. Doctors’ compliance with legal and professional standards is inconsistent, but the reasons for poor compliance are not well understood. This preliminary study investigates doctors’ experiences of and attitudes toward mental capacity assessment.MethodsThis is a descriptive, cross-sectional study where a two-domain, study-specific structured questionnaire was developed, piloted and digitally disseminated to doctors at differing career stages employed (...) in a large, multi-site National Health Service Trust in London over 4 months in 2018. Descriptive statistics and frequency tables adjusted for missing data were generated and secondary analysis was conducted.ResultsParticipants were predominantly UK trained, female and between the ages of 30 and 44 years. Less than half of the participants reported receiving formal MCAx training. Only one-third of the participants self-rated themselves as very competent or extremely competent. Self-reported MCA confidence was significantly affected by career stage with Consultants with over 10 years of experience reporting lowest confidence.ConclusionsThis study describes significant variation in practice by doctors and low self-confidence in the practice of MCAx. These results raise concerns that MCAx continues to be inconsistently performed by doctors despite appropriate awareness of the law and professional guidance on best practice. (shrink)

The phenomenon whereby severely disabled persons self-report a higher than expected level of subjective well-being is called the “disability paradox.” One explanation for the paradox among brain injury survivors is “response shift,” an adjustment of one’s values, expectations, and perspective in the aftermath of a life-altering, disabling injury. The high level of subjective well-being appears paradoxical when viewed from the perspective of the non-disabled, who presume that those with severe disabilities experience a quality of life so poor that it (...) might make their lives not worth living. This presumption has profound consequences, for it may inform end-of-life choices made in advance directives, or influence decisions made by surrogates on behalf of persons who are unable to direct their own medical treatment. -/- Peterson et al propose a cautious, well-considered plan to use fMRI-based brain-computer interfaces to assess the decision making capacity of covertly aware, behaviorally non-responsive individuals who retain high levels of preserved cognition. Their plan, if it succeeds, could eventually restore autonomy and empower some severely disabled persons, allowing them to participate in clinical decision making. Peterson et al discuss possible in-principle objections to their proposal, among them the “argument from psychological health,” and the “changing sets of values” objection. These objections both presume that deviations from a pre-injury norm could indicate diminished decision making capacity. This presumption threatens the autonomy of the patient who is capable of making decisions, but whose post-injury decisions appear to diverge from pre-injury preferences or values. In light of the potential for response shift, and the disability paradox, it should not be inferred that changes in values or preferences are unreflective of the true current preferences of a brain-injured person, nor are they conclusive evidence of diminished capacity. Presuming diminished capacity on the basis of unexpected or unconventional preferences has, in the past, been used to disempower patients whose autonomy and capacity would not have been doubted had they made choices that accorded with the expectations or values of others. We must be cautious, and vigilant, to prevent similarly diminishing the autonomy of covertly aware, behaviorally non-responsive individuals on the basis of empirically and ethically questionable inferences about their decision making capacity. (shrink)

Based on extensive clinical questionnaire data, this paper explores the relation between research subjects’ self-assessed understanding and actual knowledge of a large-scale predictive screening study, and its implications for the proper handling of information and consent routines in longitudinal studies. The intitial data show that low self-assessed understanding among participants was correlated with limited knowledge, concern over participation and collected samples, less satisfaction with information, and feeling passive or negative towards the study. Among those reporting high understanding, a non-negligible number (...) displayed a lack of knowledge regarding central aspects of the study. Regarding high assessed understanding, the multivariate analysis identified the main predictor variables to be knowledge, having a positive attitude towards participation and the study itself, being satisfied with information, having a stable psychosocial background and feeling calm regarding the handling of samples. These findings indicate that to evaluate participants' understanding through self-assessment may not be reliable method. Self-assessed understanding may rather be a good indicator of general attitudes than a tool for analysing content. The data also show that actual understanding varies considerably among participants, suggesting that more effort needs to be put into adjusting the information to the needs of different subgroups. It is argued that when doing this, researchers in longitudinal studies must be careful not to exhaust participants with excessive information that they do not want and that may cause them to drop out. The ethical relevance of obtaining repeated consents in longitudinal research is discussed. (shrink)

Introduction: Globally, vitamin D deficiency is one of the most common deficiencies, affecting nearly half the world's population. The objective of this survey was to assess and compare the knowledge about vitamin D and the perceived state of health in Emirati and international tourist female students in Dubai, UAE. Methods: This is a cross-sectional study that took place in universities in Dubai, UAE. This survey consisted of 17 multiple choice questions. The first part of the survey assessed levels of (...) supplementation, diet and UV exposure. Another section evaluated the participants’ self-assessed state of health regarding vitamin D testing, symptoms related to vitamin D deficiency and general welbeing. The collected data were statistically analyzed using SPSS statistics for windows version 26.0 (SPSS Inc., Chicago, IL). Statistical significance was set at P<0.05. Results: 105 respondents were Emiratis and 65 were international students. The average age was 21, with an average BMI 23.3. Almost one-third of each group reported using Vitamin D supplements once weekly. The majority of both groups reported rarely getting tanned. Almost all participants reported regular consumption of Vitamin-D rich foods. In both groups, more than half reported consuming milk and cheese regularly and up to one-third reported consuming fish in a regular manner. Although more than half of the students rated their health as good; more than two-thirds reported experiencing muscle pain; only half reported having their blood Vitamin D levels measured once; half reported experiencing problems with concentration and more than three-quarters reported experiencing bad mood in the past month. The prevalence of these symptoms was almost similar across different categories of vitamin D supplementation, tanning habits, dietary intake, or nationality. No statistically significant differences were noted between the 2 groups. Conclusion: more Emirati students were aware of the association between vitamin D and osteoporosis than International tourist students (40% vs. 21.9%, respectively; p<0.05). On the other hand, both groups had lower knowledge about the relationship between vitamin D deficiency and depression, Rheumatoid Arthritis and Hypertension, and the optimal vitamin D level; however, no statistically significant differences were noted regarding this knowledge of Emiratis and international students. (shrink)

Medical, scientific and societal progress has been such that, in a universalist humanist perspective such as the WHO’s, it has become an ethical imperative for the primary endpoints in evidence based health care research to be expressed in e.g. Quality Adjusted Life Years (QALYs). The classical endpoints of discrete health‐related functions and duration of survival are increasingly perceived as unacceptably reductionistic. The major problem in ‘felicitometrics’ is the measurement of the ‘quality’ term in QALYs. That the mental, physical (...) and social domains, each containing many dimensions and items, all contribute to QOL is uncontroversial. What is controversial, is the weight of the different dimensions in overall QOL. It has been shown to be very different between different patient populations. In human individuals, assuredly complex systems, the many dimensions and items of QOL observably interact, probably sometimes also in chaotic ways. In these conditions, the weights of isolated items in individuals become for all practical purposes meaningless. Therefore, the much used multi‐item questionnaires at best describe, but do not evaluate QOL, neither in individuals, nor in populations. For example, allergic patients treated with cetirizine scored better than those a placebo on all dimensions of the SF‐36, a standard QOL questionnaire. Here there is no serious doubt that the treatment improved QOL, because it is highly unlikely that any important dimension on which the patient groups would have scored otherwise is missing in the SF‐36. However, whether piracetam treatment of acute stroke, which improved the surrogate endpoints neurological and functional scores, also improved QOL is plausible, but will be proven only when comprehensive QOL measurement will have been done. And suppose in randomised populations of end‐stage metastatic solid cancer patients, one would compare palliative last‐line chemotherapy with only palliative care, and one would, as can be expected, find no significant differences in average survival, and chemotherapy superior for the mental domain, but inferior for the physical comfort domain: we would not know which treatment, on aggregate, would be the better. The problem is that QOL is an individual and emergent construct, the resultant of a great many intractions, and of a different order than its contributing components. Overall QOL can therefore best be captured only as the Gestalt of a global self‐assessment. Just as people in everyday life, while acting under uncertainty, make global assessments all the time, so they can seriously answer the serious question: ‘How have you been?’ A solemn, practical, non peer‐relativistic, non‐cultural, experiential, and well tolerated way to obtain such responses is Anamnestic Comparative Self Assessment (ACSA), in which the subjects' memories of the best and the worst times in their life experience define their individual scale of QOL. ACSA is thus both exquisitely idiosyncratic, and yet can in a universalist humanistic perspective be considered generic. Using both a multi‐item questionnaire and a global assessment allows by one logistic regression, to estimate the weights of the dimensions and items in populations, and thus identify those whose improvement would most contribute to the QOL of the greatest number. A combined approach to measurement of QOL is necessary to maximise the utility of QOL interventions. (shrink)

Depression is often diagnosed in patients nearing the end of their lives and medication or psychotherapy is prescribed. In many cases this is appropriate. However, it is widely agreed that a health care professional should treat sick persons so as to improve their condition as they define improvement. This raises questions about the contexts in which treatment of depression in late life is appropriate. This article reviews a problematic case concerning the appropriateness of treatment in light of the literature (...) in bioethics. Specific attention is paid to the concept of authenticity and the role of suffering. Suffering is often the result of a situation in which one's self is damaged. In some circumstances, this suffering should not be seen as a symptom of illness but as a reflection, in a difficult life context, of the individual's authentic nature. Assessment of depression in the elderly must go beyond a symptom list and must consider both the context of the individual's situation and his or her authentic self. When the symptoms reflect the individual's assessment of the situation in the context of the authentic self, they may be "appropriate." However, even when the symptoms are appropriate, if they interfere with life assessment and adjustment, treatment should be considered. (shrink)

Proper utilization of antenatal and postnatal care services plays an important role in reducing the maternal mortality ratio and infant mortality rate. This paper assesses the utilization of health care services during pregnancy, delivery and post-delivery among rural women in Uttar Pradesh and examines its determinants. Data from a baseline survey of UP Community Mobilization project was utilized. A cross-sectional sample of currently married women who delivered a baby 15 months prior to the survey was included. Information was collected (...) from 2208 women spread over five districts of UP. Information on socio-demography characteristics, utilization of antenatal care, delivery and postnatal care services was collected. To examine the determinants of utilization of maternal health services, the variables included were three ANC visits, institutional delivery and PNC within 42 days of delivery. Separate multilevel random intercept logistic regressions were used to account for clustering at a block and gram panchayat level after adjusting for covariates. Eighty-three percent of women had any ANC. Of them, 61% reported three or more ANC visits. Although 68% of women delivered in a health facility, 29% stayed for at least 48 h. Any PNC within 42 days after delivery was reported by 26% of women. In the adjusted analysis, women with increasing number of contacts with the health worker during the antenatal period, women exposed to mass-media and non-marginalized women were more likely to have at least three ANC visits during pregnancy. Non-marginalized women and women with at least three ANC visits were more likely than their counterparts to deliver in an institution. Contacts with health worker during pregnancy, marginalization, at least three ANC visits and institutional delivery were the strong determinants for utilization of PNC services. Self-help group membership had no association with the utilization of maternal health services. Utilization of maternal health services was low. Contact with the health worker and marginalization emerged as important factors for utilization of services. Although not associated with the utilization, SHGs can be used for delivering health care messages within and beyond the group. (shrink)

As COVID-19 pandemic continued to propagate, millions of lives are currently at risk especially elderly, people with chronic conditions and pregnant women. Iraq is one of the countries affected by the COVID-19 pandemic. Currently, in Iraq, there is a need for a self-assessment tool to be available in hand for people with COVID-19 concerns. Such a tool would guide people, after an automated assessment, to the right decision such as seeking medical advice, self-isolate, or testing for COVID-19. This study proposes (...) an online COVID-19 self-assessment tool supported by the internet of medical things (IoMT) technology as a means to fight this pandemic and mitigate the burden on our nation’s healthcare system. Advances in IoMT technology allow us to connect all medical tools, medical databases, and devices via the internet in one collaborative network, which conveys real-time data integration and analysis. Our IoMT framework-driven COVID-19 self-assessment tool will capture signs and symptoms through multiple probing questions, storing the data to our COVID-19 patient database, then analyze the data to determine whether a person needs to be tested for COVID-19 or other actions may require to be taken. Further to this, collected data can be integrated and analyzed collaboratively for developing a national health policy and help to manage healthcare resources more efficiently. The IoMT framework-driven online COVID-19 self-assessment tool has a big potential to prevent our healthcare system from being overwhelmed using real-time data collection, COVID-19 databases, analysis, and management of people with COVID-19 concerns, plus providing proper guidance and course of action. (shrink)

ObjectiveSelf-esteem and self-acceptance are not only basic features but also influential factors of mental health. The present study aimed at assessing the effects of psychoeducational lecture and group intervention on self-esteem and self-acceptance in Chinese college students.MethodsA total of 149 Chinese college students who participated in a mental health course were randomly class-based assigned into the psychoeducational lecture group and the self-focused intervention group. The lecture group received 6-session psychoeducational lectures on overview of mental health, campus adaptation, (...) stress adjustment, self-understanding, emotion management, and interpersonal relationships. The self-focused intervention group was treated with self-related group activities involving aspects of self-knowledge, self-feeling, and self-regulation for six sessions. Pre- and post-intervention measurements were taken with Rosenberg Self-Esteem Scale and Self-Acceptance Questionnaire for both groups.ResultsSelf-esteem significantly increased in both groups after six sessions. However, the enhancement of self-acceptance was more robust for the self-focused intervention group than the psychoeducational lecture group.ConclusionThe psychoeducational lecture and self-focused intervention were effective approaches to improve self-esteem for Chinese college students. With respect to self-acceptance, self-focused group intervention might have a more prominent effect. (shrink)

Empowerment is a prominent ideal in health promotion. However, the exact meaning of this ideal is often not made explicit. In this paper, we outline an account of empowerment grounded in the human capacity to adapt and adjust to environmental and societal norms without being completely determined by those norms. Our account reveals a tension at the heart of empowerment between (a) the ability of self-governance and (b) the need to adapt and adjust to environmental and societal norms. We (...) address this tension by drawing from the work of Freud, Canguilhem, and Lacan. First, we clarify through a discussion of Freud’s notion of sublimation that it is difficult to assess empowerment independent of any social valuations, but also that it is no less problematic to make it dependent on social valuations alone. Second, we draw from the work of Canguilhem to show how empowerment can be understood in terms of the individual’s capacity to tolerate the aggressions of a multiplicity of environments. Third, using Lacan, we show how empowerment requires incorporation of social and symbolic norms, without necessarily rendering ourselves a mere product of these norms. Finally, we demonstrate how the views of these authors can complement one another, resulting in a more sophisticated understanding of empowerment. (shrink)

Background Healthcare workers (HCWs) can face situations that conflict with their moral beliefs, leading to moral injury, an adverse psychological consequence that was more frequent during the COVID-19 pandemic. Self-compassion is a potential coping mechanism for moral injury by encouraging acceptance of human limitations and suffering. Objectives This study aimed to examine the associations between self-compassion components and moral injury prevalence among HCWs in Quebec, Canada, during the COVID-19 pandemic. Research design A cross-sectional study design was employed. Participants: and research (...) context: The sample of this study consisted of HCWs and leaders from the Quebec province. Participants completed validated self-administered questionnaires assessing both positive and negative self-compassion components (self-kindness vs self-judgment; common humanity vs isolation; and mindfulness vs overidentification) and moral injury dimensions (self-oriented and other-oriented). Prevalence ratios (PRs) and 95% confidence intervals (CIs) for the associations between self-compassion components and moral injury dimensions were modeled using Poison robust regressions. The models were adjusted for various covariates, including sex, age, gender, and socio-demographic and lifestyle factors. Ethical considerations Ethical approval for this study was obtained from the ethics committee of the Centre intégré universitaire de santé et de services sociaux de la Capitale-Nationale in Quebec, Canada. All participants provided written informed consent prior to participating in the study. Additionally, permission was sought and obtained from the original authors of the tools used in this study, including the self-compassion and moral injury scales. Results The study involved 572 HCWs (60.5% nurses) and leaders. Around half of the participants (50.70%) exhibited moderate levels of self-compassion, while the prevalence of low levels of self-compassion ranged from 21.68% to 48.08% for the positive subscales and from 23.78% to 44.41% for the negative subscales. Regarding moral injury, 10.14% of participants reported moderate to high self-oriented moral injury, 29.19% reported moderate to high other-oriented moral injury, and 13.81% demonstrated moderate to high total moral injury. Higher self-compassion levels were associated with lower moral injury prevalence. HCWs with high self-compassion had a 93% lower likelihood of experiencing moral injury (PR: 0.07, 95% CI: 0.03–0.19). Self-kindness demonstrated the strongest association with reduced moral injury (PR: 0.24, 95% CI: 0.11–0.52), followed by mindfulness (PR: 0.37, 95% CI: 0.18–0.75). However, common humanity did not show a statistically significant association with moral injury prevalence. Conclusion These findings suggest a potential association between self-compassion and reduced prevalence of moral injury among HCWs, highlighting promising interventions to manage moral injury during crises. Such initiatives could promote the mental wellbeing of HCWs and preventing the negative consequences of moral injury, including anxiety, depression, and burnout. (shrink)

Background: Chronic Pain (CP) has serious medical and social consequences, and leads to economic burden that threatens the sustainability of healthcare services. Thus, optimized management of pain tools to support CP patients in adjusting to their condition and improving quality of life is timely. Although Acceptance and Commitment Therapy (ACT) is considered an evidence-based psychological approach for CP, evidence for the efficacy of online-delivered ACT for CP is still scarce. At the same time, studies suggest that self-compassion mediates the change (...) in disability and psychopathological symptoms in ACT interventions for CP, although self-compassion is not a specific target in ACT. Thus, an explicit focus on self-compassion might increase the efficacy of ACT interventions for CP, although this hypothesis has not been tested. This study aims to develop an eHealth ACT and compassion-based self-management intervention for CP, the iACTwithPain, and to compare its efficacy in improving health outcomes to a similar ACT-only intervention and a waiting list group. Methods: The eHealth platform that will host the interventions will be developed using a flat design identity and will be interactive. The iACTwithPain intervention will comprise 8 weekly self-management sessions, and will be developed taking into consideration the psychological flexibility model applied to CP, with the addition of explicit compassion-based components. To analyse whether the iACTwithPain intervention will present superiority in improving CP’s impact and related health markers over the two other conditions, this study will follow a RCT design with three arms. CP patients will be recruited through direct contact with patient associations and healthcare services and a national press release in Portugal. Outcome measurement will be conducted at baseline, post-intervention and at 3- and 6-months follow-ups. The interventions’ acceptability will also be assessed. Discussion: The iACTwithPain intervention is expected to improve CP patients’ psychosocial functioning, quality of life, and empowerment, by promoting adaptive disease management and regulation of pain-related internal experiences. Results will contribute to a better understanding on the pertinence of adding compassion elements to ACT for CP and to reach an optimized intervention for CP. (shrink)

It has been observed that some groups in society tend to report their health to be better than would be expected through more objective measures. The available evidence suggests that while variations in self-assessed measures of health may act as good proxies of mortality and morbidity in homogeneous populations, in some groups, such as the Aboriginal and Torres Strait Islander communities of Australia, these subjective measures may provide a misleading picture. Useful insights into the formation of health (...) perceptions can be drawn from a range of disciplines, in particular, from social comparison theories, models of illness behaviour, survey literature and linguistics. These theories and models help to provide an understanding of the different ways in which illness may be perceived, evaluated and acted upon by different kinds of people. Such considerations can have very direct implications for those planning and evaluating public health programs as well as those responsible for funding such programs. (shrink)

Previous studies have found that serum lipid levels independently associate with mental health problems in adulthood. However, little is known about the association between serum lipid levels and positive aspects of mental health such as resilience and self-esteem, which develop in adolescence. The aim of this study is to examine the association between serum lipid levels and resilience and self-esteem in Japanese adolescents. Data were pooled data from the Adachi Child Health Impact of Living Difficulty study in (...) 2016 and 2018, a school-based, cross-sectional study in Adachi City, Tokyo, Japan. Resilience of the child was assessed by caregivers, and self-esteem was self-identified via questionnaires. Serum lipid levels [total cholesterol, low-density lipoproteins, and high-density lipoproteins ] were assessed in school health checkup, in addition to height and weight measurements. Multiple linear regression was applied to investigate the association between standardized serum lipid levels and resilience and self-esteem. LDL showed inverse association with resilience [β = −1.26, 95% confidence interval = −2.39 to −0.14] after adjusting for child’s BMI, month of birth, sex, absence of parent, household income, caregiver’s mental health, and lifestyle. We also found an inverse association of total cholesterol and higher LDL cholesterol with self-esteem. HDL cholesterol was not associated with resilience and self-esteem. Among Japanese adolescent, total and LDL cholesterol may be biomarkers of resilience and self-esteem. (shrink)

Background Treatment of chronic inflammatory bowel disease (IBD) aims to improve patients’ quality of life and the extent of treatment success is measured via patient reported outcomes (PROs). However, questionnaires used to collect PROs often include scales that are not specific to IBDs. Improving these scales requires a deeper understanding of patients’ lived experience. With this study we give first insights and develop hypotheses on how patients with IBDs experience their body and self and how they adjust their life plans (...) in the context of precision medicine (PM). The guiding question is to understand what they need to achieve a good life, while facing their disease. Methods We developed a conception of the “good life” that draws on Philippa Foot’s “naturalized” approach and distinguishes six different dimensions that are relevant for a good life. This conception guided us as we conducted 10 qualitative interviews with patients suffering from IBD who were in precision medicine clinical research settings. The interviews aimed to gain insights for answering our research question: How do body experiences affect the good life of patients with IBD? We analyzed the interviews with interpretative phenomenological analysis (IPA). Results Five group experiential themes emerged: (i) Life options and plans, (ii) other people’s responses, (iii) strategies to deal with others’ responses, (iv) perception of the body and self, and (v) perception of life as good despite suffering. We report here on three of them (i, iv and v), which are primarily relevant for evaluating the outcomes of PM care. Whereas with “life options and plans (i),” our study predominantly confirmed previous research, with “perception of the body and self (iv),” we found that some of the patients changed their relationship to their body and themselves. They perceived the body or the disease as the “other” and their self appears divorced from their own body. Although this might be an avoidance strategy patients use to assign responsibility for their condition and its “disgusting” symptoms to the “other,” it is important to include it in patient reported outcome (PRO) assessments. Conclusions We conclude with the insight that the multi-dimensional approach based on Foot’s concept of a good life is well-suited as a basis for investigating the quality of life of people with IBD. Interviews based on this concept produced results that go beyond the understanding of health-related quality of life (HRQoL). Additionally, we offer some considerations about patients’ opportunities for achieving a good life and suggestions for further developing patient reported outcome scales. (shrink)

This paper contends that a research ethics approach to the regulation of health data research is unhelpful in the era of population‐level research and big data because it results in a primary focus on consent (meta‐, broad, dynamic and/or specific consent). Two recent guidelines – the 2016 WMA Declaration of Taipei on ethical considerations regarding health databases and biobanks and the revised CIOMS International ethical guidelines for health‐related research involving humans – both focus on the growing reliance (...) on health data for research. But as research ethics documents, they remain (to varying degrees) focused on consent and individual control of data use. Many current and future uses of health data make individual consent impractical, if not impossible. Many of the risks of secondary data use apply to communities and stakeholders rather than individual data subjects. Shifting from a research ethics perspective to a public health lens brings a different set of issues into view: how are the benefits and burdens of data use distributed, how can data research empower communities, who has legitimate decision‐making capacity? I propose that a public health ethics framework – based on public benefit, proportionality, equity, trust and accountability – provides more appropriate tools for assessing the ethical uses of health data. The main advantage of a public health approach for data research is that it is more likely to foster debate about power, justice and equity and to highlight the complexity of deciding when data use is in the public interest. (shrink)

From 1900 onwards, scientists and novelists have explored the contours of a future society based on the use of “anthropotechnologies” (techniques applicable to human beings for the purpose of performance enhancement ranging from training and education to genome-based biotechnologies). Gradually but steadily, the technologies involved migrated from (science) fiction into scholarly publications, and from “utopia” (or “dystopia”) into science. Building on seminal ideas borrowed from Nietzsche, Peter Sloterdijk has outlined the challenges inherent in this development. Since time immemorial, and at (...) least since the days of Plato’s Academy, human beings have been interested in possibilities for (physical or mental) performance enhancement. We are constantly trying to improve ourselves, both collectively and individually, for better or for worse. At present, however, new genomics-based technologies are opening up new avenues for self-amelioration. Developments in research facilities using animal models may to a certain extent be seen as expeditions into our own future. Are we able to address the bioethical and biopolitical issues awaiting us? After analyzing and assessing Sloterdijk’s views, attention will shift to a concrete domain of application, namely sport genomics. For various reasons, top athletes are likely to play the role of genomics pioneers by using personalized genomics information to adjust diet, life-style, training schedules and doping intake to the strengths and weaknesses of their personalized genome information. Thus, sport genomics may be regarded as a test bed where the contours of genomics-based self-management are tried out. (shrink)

Promoting translational research as a means to overcoming chasms in the translation of knowledge through successive fields of research from basic science to public health impacts and back is a central challenge for research managers and policymakers. Organizational leaders need to assess baseline conditions, identify areas needing improvement, and to judge the impact of specific initiatives to sustain or improve translational research practices at their institutions. Currently, there is a lack of such an assessment tool addressing the specific context (...) of translational biomedical research. To close this gap, we have developed a new survey for assessing theorganizational climate for translational research. This self-assessment tool measures employees’ perceptions of translational research climate and underlying research practices in organizational environments and builds on the established Survey of Organizational Research Climate, assessing research integrity. Using this tool, we show that scientists at a large university hospital (Charité Berlin) perceive translation as a central and important component of their work. Importantly, local resources and direct support are main contributing factors for the practical implementation of translation into their own research practice. We identify and discuss potential leverage points for an improvement of research climate to foster successful translational research. (shrink)

Background: Ethical competence in nursing practice helps clinical nurses to think critically, analyse issues, make ethical decisions, solve ethical problems and behave ethically in their daily work. Thus, ethical competence contributes to the promotion of high-quality care. However, studies on ethical competence in Malawi are scanty. Objectives: The aim of this study was to explore ethical competence among clinical nurses in selected hospitals in Malawi. Methodology: A cross-sectional survey was conducted in four selected hospitals in Malawi with a sample of (...) 271 clinical nurses. Data were collected using self-administered questionnaires, which included a Moral Competence Scale for Home Care Nurses. Descriptive statistics and logistic regression were computed for the dataset using STATA version 12.0. Ethical consideration: The study protocol complied with all ethical requirements and was approved by the College of Medicine Research Ethics Committee under the University of Malawi. Results: The clinical nurses in Malawi are ethically competent. However, there is a significantly high number (p 0.05). Three determinants of high ethical competence level (strong will, judgement skills and recognition of discrepancy of intention) were identified through a reduced model after stepwise logistic regression analysis. Furthermore, results show that indicators of ethical competence include caring, confidentiality and observance of nurses dressing code. The study has also confirmed that the Moral Competence Scale for Home Care Nurses is a reliable tool to assess ethical competence in low-resource settings. Conclusion: The majority of nurses who completed the survey had low ethical competence. However, clinical nurses with high ethical competence level are required to competently manage complex ethical challenges in health facilities. Strategies for enhancing ethical competence such as continuing ethics education, establishment of ethics committees and provision of supportive supervision are recommended to enable nurses in Malawi attain a high level of ethical competence. (shrink)

I would like to thank Whitehurst et al for their comments on my paper.1 Although I will argue their approach will not eliminate the potential for disability discrimination from quality-adjusted life year -based assessment, their comments were very thought provoking. Whitehurst et al argue that, to the extent that allocating healthcare by QALYs discriminates against disabled patients, the fault is not with the QALY framework, but with ‘the descriptive systems of preference-based health-related quality of life instruments’.1 Specifically, they argue (...) that some HRQoL survey instruments do not characterise health impairments adequately. For example, Whitehurst et al mention an earlier study of HRQoL survey instruments that had different ways of asking about mobility. Some instruments asked specifically about the respondent’s ability to walk, while others asked about mobility. The study found that, in relation to individuals with spinal cord injuries, survey instruments focused on ability to walk produced lower quality of life scores than instruments focused on mobility. Whitehurst et al argue from this that survey instruments should include ‘adequate’ health state descriptions. This seems eminently sensible. However, contrary to their view, there is no guarantee that this will avoid discrimination. In fact, …. (shrink)

The aim of this systematic review was to summarize and assess the quality of asthma intervention health economic studies from 2002 to 2007, compare the study findings with clinical management guidelines, and suggest avenues for future improvement of asthma health economic studies. Forty of the 177 studies met our inclusion criteria. We assessed the quality of studies using The Quality of Health Economic Studies validated instrument (total score range: 0-100). Six studies (15%) had quality category 2, 26 (...) studies (65%) achieved quality category 3, and the remaining eight (20%) studies were scored as the highest quality level, category 4. Overall, the findings from this review are in line with the Global Initiative for Asthma clinical guidelines. Many asthma health economic studies lacked appropriate long term time horizons to match the chronic nature of the disease and suffered from using effectiveness measures that did not capture all disease related risks and benefits. We recommend that new asthma simulation models: be flexible to allow for long term time horizons, focus on using levels of asthma control in their structure, and estimate both long term asthma specific outcomes like well-controlled time as well as generic outcomes such as quality adjusted survival. (shrink)

The relationship between self- and informant reports of personality using psychometric instruments is constantly the focus of attention for researchers in the field of clinical assessment in psychology. The research shows weak agreement between clinicians and patients’ assessments of personality disorders (PDs). The current study aimed at the convergence of measurement of PDs using the Shedler-Westen Assessment Procedure (SWAP-200), the self-report Character Styles Questionnaire-R (CSQ-R) and Borderline Personality Inventory (BPI). Paper-pencil questionnaires were administered to 102 inpatients (88.2% female, aged 18-64, (...) M = 38.4) in a voivodeship hospital and outpatient health care centre. The SWAP-200 allowed us to gather expert (clinician) personality ratings basing on the intensive contact with patients. Results show that only a few SWAP-200 PD scales showed low positive correlations with corresponding self-reported PD scales from the CSQ-R. With the canonical correlation analysis, we identified two functions (borderline and internalising) that described similarities between the SWAP-200 and CSQ-R. SWAP-200 Obsessive-Compulsive PD correlated negatively with BPI scales. Consistent with previous studies, the self-report and the clinical assessment were only marginally convergent. Furthermore, OCPD stands out from other disorders in that it correlates positively with health indicators and negatively with some of the other personality disorders. The highest agreement was observed in the description of Borderline PD. (shrink)

Understanding risk factors for relationship dissolution and poor relationship adjustment among couples has been an active area of research in relationship science. One risk factor, non-marital cohabitation, has shown to predict higher rates of relationship dissolution and relationship instability in some samples, but the associations among German parents with children over time are less clear. In this study, we examined the links between non-marital cohabitation and 10-year outcomes in 220 German families with preschool-aged children at the initial assessment followed (...) into adolescence. Families were assessed 7 times over the 10 years and retention at the 10-year follow-up was over 92%. After accounting for multiple testing, only mother’s report of better initial interparental communication predicted whether parents were likely to stay together over the course of the 10 years. Adolescents of parents who cohabited were at higher risk for externalizing symptoms 10 years later compared to children of married parents. In addition, although there were no differences between cohabiting couples and married couples at the initial assessment in relationship adjustment, cohabiting mothers who stayed with their partner over the 10 years showed significantly greater declines in relationship adjustment over the 10 years compared to married mothers. Findings indicate the need for further research that explores family structure and dynamics over time to inform refinement of prevention programs targeting relationships and children’s mental health. (shrink)

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

IntroductionDuring the COVID-19 outbreak, many citizens were asked to stay at home in self-quarantine, which can pose a significant challenge with respect to remaining physically active and maintaining mental health. This study aimed to evaluate the prevalence of inadequate physical activity, anxiety, and depression and to explore the relationship of physical activity with anxiety and depression symptoms among Chinese college students during quarantine.MethodUsing a web-based cross-sectional survey, we collected data from 1,396 Chinese college students. Anxiety and depression were assessed (...) with the Self-Rating Anxiety Scale and the Self-Rating Depression Scale, respectively. The data on physical activity were collected by types of physical activity and the International Physical Activity Questionnaire.ResultsDuring the COVID-19 outbreak, about 52.3% of Chinese college students had inadequate physical activity. The rates of anxiety and depression symptoms were 31.0 and 41.8%, respectively. A high level of physical activity was significantly closely associated with low anxiety, while a moderate, or high level of physical activity was significantly closely associated with reduced depression after adjusting confounding demographic factors. Moreover, specific types of physical activity, such as stretching and resistance training, were negatively correlated with both anxiety and depression; doing household chores was negatively correlated with depression.ConclusionOur findings highlight specific levels and types of home-based physical activities that need to be taken into consideration to protect the mental health of college students during the COVID-19 epidemic. (shrink)

Although the proliferation of empirical research has documented the association between parental control and school adjustment, findings of this linkage are still inconclusive. Moreover, fewer efforts have been made to address this association in middle school students. Guided by an ecological framework, the current study aimed to integrate the conflicting findings into a coherent body of knowledge, paying particular attention to two research purposes: (a) to examine the association between parental control and three objective indicators of school adjustment (...) (social competence, academic grades, and peer acceptance) and (b) to explore whether this association was moderated by individual characteristics of social identity and grit. A total of 120 Chinese middle school students (42.5% females) aged between 13 and 15 years old were recruited for this study, and research data were gathered from multiple sources. To be specific, students were asked to complete a set of self-report questionnaires concerning parental control, social identity, and grit. Meanwhile, school-related social competence was rated by head teachers; academic grades were obtained from school records; and peer acceptance was assessed by sociometric nominations. The results from hierarchical regression analyses showed that parental control was negatively associated with academic grades. Moreover, when reporting higher levels of social identity, parental control was negatively related to social competence and peer acceptance for those students with lower levels of grit. Our findings suggest that parental control can dampen middle school students’ academic performance, and low levels of grit can magnify the detrimental effect of parental control on social competence and peer acceptance in middle school students who regard themselves as closely connected to social groups. (shrink)

The expanded use of genetic testing raises key ethical and policy questions about possible benefits and harms for those receiving disease‐risk information. As predictive testing for Huntington’s was initiated in a clinical setting, survey research posing hypothetical test scenarios suggested that the vast majority of at‐risk relatives wanted to know whether they carried a disease‐causing mutation. However, only a small minority ultimately availed themselves of this opportunity. Many at‐risk individuals concluded that a positive test result would be too psychologically overwhelming. (...) A substantial literature suggests that individuals are often more resilient than anticipated in coping with many different health‐related stresses. Much of my own work in the field has been through the Risk Evaluation & Education for Alzheimer’s Disease study (REVEAL), a series of randomized clinical trials assessing the impact of genetic susceptibility testing on asymptomatic individuals at risk for Alzheimer’s disease. Our experience in developing and implementing four successive, multisite trials provides some potentially useful lessons for the field. More people will be asking for their personal genetic information. Better understanding will help us decide when access is appropriate and how best to disclose results in a manner that supports adjustment to test findings and promotes use of genetic information to improve human health. (shrink)

ObjectivesQuality of Life depends on the discrepancy between desired and current experiences, thus in chronic illness, adjustment of expectations and interpretation of the current situation are crucial. Depression is known to influence this gap, and the present study aims to further assess the role of resilience and health locus of control.MethodsA total of 94 patients with neurological disorders were screened via telephone regarding depression, resilience and HLC. Current and desired state of several life domains were assessed, such as (...) Fitness, General Health, Pain, Daily Activities, Finances, Leisure, and Family. Elastic net regularization and analyses of variance were used to disentangle the impact of depression, resilience, HLC, and sociodemographic factors on the perception of current and desired state, and the gap between both.ResultsA gap was present for all domains but largest for pain. Interpretation of the current state was linked to desired state, HLC, and age. All gaps were related to depression; certain domains were in addition influenced by resilience, HLC and sociodemographic factors. Of note, for most domains, patients did not select the highest possible desired state.ConclusionOlder patients with neurological disorders report a gap between current and desired state for many aspects of life. Adjusting expectations is beneficial in the face of declining health, but a reasonably increased desired state may positively influence the perception of the current situation. Depression negatively influences the interpretation of the Calman gap. (shrink)

Background: Multiple studies have shown that people who have experienced a serious health problem such as an injury tend to overrate the quality of health they had before that event. The main objective of this study was to test whether the phenomenon of respondents overrating their past health can also be observed in people from the general population. A second aim was to test whether habitual optimism is indeed focused on events in the future.Method: A representatively selected (...) community sample from Leipzig, Germany was examined. Respondents were asked to assess their current health, their past health, and their expected future health on a 0–100 scale. In addition, the study participants completed several questionnaires on specific aspects of physical and mental health.Results: Respondents of all age groups assessed their health as having been better in the past than it was at present. Moreover, they also assessed their earlier state of health more positively than people 5 years younger did their current state. Habitual optimism was associated with respondents having more positive expectations of how healthy they will be in 5 years time, but the correlation with their assessments of their current health was nearly as high.Conclusion: Highly positive scores of retrospectively assessed health among people who have experienced a health problem cannot totally be accounted for by a response to that health problem. (shrink)

Should a growing market for genetic self-tests be welcomed or feared? From the point of view of personal autonomy the increasing availability of predictive health information seems promising. Yet it is frequently pointed out that genetic information about future health may cause anxiety, distress and even loss of “life-hopes.” In this article the argument that genetic self-tests undermine personal autonomy is assessed and criticized. I contend that opportunities for autonomous choice are not reduced by genetic information but by (...) misperceptions and misunderstandings of the results of genetic tests. Since the interpretation of genetic information is sometimes distorted by the information provided about the genetic products, more attention should be given to deceitful marketing that overblows the utility of genetic products. Yet personal autonomy is reduced neither by genetic tests nor by genetic information and there is consequently no compelling case for the conclusion that genetic self-tests should be prohibited. (shrink)

Obesity has been pointed out as one of the main current health risks leading to calls for a so-called “war on obesity”. As we show in this paper, activities that attempt to counter obesity by persuading people to adjust a specific behavior often employ a pedagogy of regret and disgust. Nowadays, however, public healthcare campaigns that aim to tackle obesity have often replaced or augmented the explicit negative depictions of obesity and/or excessive food intake with the positive promotion of (...) healthy food items. In this paper, we draw on a phenomenological perspective on disgust to highlight that food-related disgust is connected to the character and behavior of a perceived individual even in the context of promoting healthy food items. We argue that the focus on “making the healthy food choice the easy choice” might be an important step towards the de-stigmatization of people that are affected by obesity. However, so we suggest, this focus threatens to bring back an image of individuals affected by obesity as disgusting “through the backdoor”. It does so not by portraying bodies with overweight as disgusting, but instead by implying that lifestyle choices, character and habits of people that are affected by obesity are markers of a lack of control. We argue that the close relationship between disgust and the perception of self-control in the context of obesity should be taken into consideration in the context of assessing the implications of new health promotion strategies to minimize the risk of stigmatizing people. (shrink)

Objective: Individually, vision and hearing impairments have been linked to higher levels of anxiety and depression. We investigated the effect of dual sensory impairment in a large representative sample of Spanish adults. Methods: Data from a total of 23,089 adults from the Spanish National Health Survey 2017 were analyzed. Self-reported difficulty of seeing and hearing, and depression and chronic anxiety were analyzed. Multivariable logistic regression was assessed for difficulty with vision alone, hearing alone and with difficulty with both, adjusting (...) for gender, age, marital status, living as a couple, education, smoking, alcohol consumption, BMI, physical activity, use of glasses/contact lenses, and hearing aid. Results: Visual difficulty, hearing difficulty, and dual difficulties were all associated with significantly higher odds for depression and for chronic anxiety. Dual sensory difficulty was associated with higher odds ratios for depression and anxiety when compared to either impairment alone. Conclusion: Dual sensory difficulty is associated with significantly higher odds of anxiety and depression when compared to either vision or hearing difficulty alone. Appropriate interventions are needed to address any reversible causes of vision and hearing as well as anxiety and depression in people in these specific groups. (shrink)

Background: The novel coronavirus disease 2019 posed an unprecedented threat to Chinese healthcare professionals. Nevertheless, few studies notably focused on the mental health conditions of nurses and explored protective factors to prevent posttraumatic stress and psychological distress. This study aimed to explore the prevalence and the predictive factors especially defensive predictors associated with posttraumatic stress and psychological distress in nurses during the COVID-19 pandemic.Methods: In this online study, 1,728 nurses were included in the final analysis. Posttraumatic stress disorder checklist (...) for Diagnostic and Statistical Manual of Mental Disorders, 5th Edition and Self-Reporting Questionnaire was used to assess posttraumatic stress and psychological distress.Results: The results demonstrated that the prevalence of posttraumatic stress and psychological distress in nurses throughout China between February 1, 2020 and February 13, 2020 was 39.12 and 24.36%, respectively. Multivariate logistic regression indicated that insomnia, high panic intensity, and high impact of the COVID-19 pandemic were risk predictors of posttraumatic stress and psychological distress in nurses. Married participants had a 1.58 times increased risk of having posttraumatic stress when compared with the single participants. Frontline medical staff were more likely to suffer from psychological distress. The adequate exercise was a protective predictor of psychological distress [adjusted odds ratio = 0.655, 95% CI = 0.486–0.883], but not with posttraumatic stress. High-quality diet was a protective predictor of posttraumatic stress and psychological distress.Conclusions: Our study revealed the prevalence and factors associated with posttraumatic stress and psychological distress in nurses during the COVID-19 pandemic. Low panic intensity, low level of impact, satisfactory sleep, adequate exercise, and better diet were protective factors of posttraumatic stress and psychological distress. It indicated that the psychological status of nurses should be monitored, and protective factors associated with posttraumatic stress and psychological distress should be increased. (shrink)

Objective: The objective of our current research is to compare the different psychological interventions and distinguish the most effective way to treat psychological crisis according to different clinical manifestations in people affected by coronavirus disease 2019. No previous systematic review has provided a comprehensive overview by performing a Bayesian network meta-analysis of this current topic.Method: A systematic review and a Bayesian network meta-analysis were conducted on randomized controlled trials, non-RCTs, case–control studies, self-controlled case series, cohort studies, and cross-sectional studies of (...) all the available interventions for psychological crisis in people affected by COVID-19. We searched the electronic databases EMBASE, PubMed, Web of Science, PsycINFO, and Cochrane Library, as well as the Chinese databases such as Sinomed, Chinese Biomedicine Literature, Chinese Scientific Journal Database, WanFang Database, and China National Knowledge Infrastructure, from 2019 to April 30, 2020. The main outcomes were self-rating anxiety scale, self-rating depression scale, patient health questionnaire, and symptom checklist. The study is registered with Inplasy, number 202050076.Result: Sixteen self-controlled case series comprising 1,147 participants compared five different psychological interventions with four different measurement scales were included in this study. For effectiveness, all the psychological therapies were significantly more effective than before intervention. Our results showed that supportive therapy, which is adjusted to the COVID-19-related mental crisis, is the best treatment compared with behavioral therapy, nursing-based psychological therapy, traditional Chinese medicine therapy, and COVID-19-related standard training at reducing the anxiety-related symptoms assessed by SAS. When measured by SDS, BT was better than ST and NBPT treatment for reducing the depression symptoms. And ST was better than BT and ST+BT as assessed by PHQ-9. In the end, the last network meta-analysis indicated that NBPT was more effective than ST by the measurement of SCL-90.Conclusion: Our research suggested the potential effectiveness of psychological interventions for decreasing psychological crisis in people affected by COVID-19 and try to introduce the best effective treatment options for clinical practice according to the clinical manifestations of psychological problems, but further confirmation from high-quality RCTs is needed. (shrink)

BackgroundPhysical activity and Physical fitness have received tremendous attention in the field of physical and mental health. However, limited attention has been given to the associations of self-reported physical fitness with some health-related outcomes. Given the COVID-19 pandemic is still active in many Chinese regions, assessing health-related physical fitness in adolescents using field-based assessment is unrealistic, therefore, this study was conducted via a self-reported questionnaire.PurposeThe present cross-sectional study was aimed at delving into the relationship between self-reported physical (...) fitness with self-rated health, depression, anxiety, and body satisfaction in adolescents. Three thousand eight hundred and seven study participants from 12 public schools in South-eastern China were recruited and 2,407 of them provided valid data on variables that this study needed for analysis.Materials and methodsStudy participants were asked to self-report their sociodemographic factors, independence, and outcomes. Generalized linear models were used to explore the associations of self-reported physical fitness with depression, anxiety, and body satisfaction. A total of 2,407 children and adolescents with a mean age of 13.82 years were included in the final study analysis.ResultsHigher self-reported levels of general physical fitness and cardiorespiratory fitness were associated with better self-rated health, and body satisfaction but with lower risks of depression and anxiety.ConclusionThe current study offered evidence on the roles of self-reported physical fitness and health-related outcomes. To facilitate health in children and adolescents, advocating fitness education, and promotion could be a feasible approach. (shrink)

Assessment is a necessary task in all areas of education, but there is no agreement on how to assess the impacts of different approaches to sex education, both on an individual level and on a population level over time. The history of mid-20th Century Family Life Education in the United States illuminates some of the obstacles that have made assessing sex education programmes so difficult: control groups, access to large numbers of research subjects and the means to verify self-reporting are (...) elusive. These persistent challenges have to do with the nature of the subject, which is, in contrast to most subjects, not supposed to be practised at school. Standards of reliability, validity and classroom authenticity, therefore, apply partially at best. We argue that some approaches to sex education are valuable whether or not they are assessable, and that some things that are assessable may not be valuable in the way they are thought to be. (shrink)

Background: People with traumatic brain injury face a range of mental health challenges during the adjustment process post-injury, but access to treatment can be difficult, particularly for those who live in regional and remote regions. eHealth provides the potential to improve access to evidence-based psychological therapy for people with a severe TBI. The aim of the current study is to assess the efficacy of a psychological intervention delivered via video consulting to reduce psychological distress in people with TBI.Methods: (...) This paper outlines the protocol for a multi-center, three-arm, parallel, non-inferiority randomized controlled trial of an evidence-based manualized psychological intervention, ACT-Adjust. ACT-Adjust provides nine sessions for adults with a moderate to severe TBI experiencing clinical levels of psychological distress. Fifty-six participants referred from Brain Injury Rehabilitation Units across New South Wales and the NSW icare scheme will be randomly allocated to three conditions; video consulting, face-to-face and, a waitlist control.Discussion: This is the first RCT to evaluate the efficacy of a psychological therapy delivered via video consulting for individuals with a moderate to severe TBI.Trial Registration:www.anzctr.org.au, Australian New Zealand Clinical Trials Registry ANZCTRN2619001602112. (shrink)

We describe the design and evaluation of a sub-clinical digital assessment tool that integrates digital biomarkers of depression. Based on three standard cognitive tasks on which people with depression have been known to perform differently than a control group, we iteratively designed a digital assessment tool that could be deployed outside of laboratory contexts, in uncontrolled home environments on computer systems with widely varying system characteristics. We conducted two online studies, in which participants used the assessment tool in their own (...) homes, and completed subjective questionnaires including the Patient Health Questionnaire —a standard self-report tool for assessing depression in clinical contexts. In a first study, we demonstrate that each task can be used in isolation to significantly predict PHQ-9 scores. In a second study, we replicate these results and further demonstrate that when used in combination, behavioral metrics from the three tasks significantly predicted PHQ-9 scores, even when taking into account demographic factors known to influence depression such as age and gender. A multiple regression model explained 34.4% of variance in PHQ-9 scores with behavioral metrics from each task providing unique and significant contributions to the prediction. (shrink)

Against the backdrop of an aging global population and the increasing pressure of medical care expenditures for seniors, this paper used a fuzzy regression discontinuity model to explore the effects of retirement on the self-assessed health and objective physical and mental health of older people. Using survey data from the China Health and Retirement Longitudinal Study, our model addresses some relevant academic controversies. Our sample was comprised of male respondents from government agencies, enterprises, and public institutions. The (...) research explored the impact of retirement on lifestyle habits and included an in-depth analysis of the mechanism through which retirement influences different aspects of health. The results show that: Retirement does not have any significant impact on objective health, including depression and self-care ability, but it does cause a notable decline in subjective health assessment. Retirement shortened the sleep time of respondents, which may account for lower scores on subjective health self-evaluations, but it did not lead to any noticeable improvement in habits which are harmful to health, such as smoking and drinking. Marriage can help alleviate the problems of depression and smoking among older people, and education has a somewhat broader positive effect on their health and lifestyles; however, neither factor helps to improve the sleep problems of older people. Therefore, this paper recommends that efforts should be made to both optimize retirement policies and seek further ways to improve the health of the retired population. (shrink)

Within the western health-care context autonomyis a central value. Still, as it is used withinthis context it is far from clear what we areactually talking about. In this article theauthor outlines four different uses or aspectsof autonomy: self-determination, freedom,desire-fulfilment and independence. Oneimportant conclusion will be that in order tobe able to respect autonomy in a way thatactually brings value to the patient’s life weneed to clearly assess what aspect of autonomythe patient values and for what reason it isvalued by (...) the patient. (shrink)

Good sleep is essential for health but there is no consensus on how to define and measure people’s understanding of good sleep. To date, people’s perceptions of a good night’s sleep have been, almost exclusively, conceptualized under the lens of sleep quality, which refers to objective characteristics of good sleep, such as such as ease and time needed to fall asleep, hours of sleep, and physical symptoms during sleep and upon awakening. A related, yet different construct, sleep satisfaction, refers (...) to perceived positive affect about one’s sleep experience and has, to date, received little attention. This research focuses on sleep satisfaction, rather than sleep quality, and aims to develop a self-report measure to assess sleep satisfaction in an English adult population. As the measure will be developed in Suffolk, England, and its primary intended users are Suffolk community members, it is labelled the Suffolk Sleep Index. The SuSI will draw from principles of community-based participatory research, following a seven-phase developmental process comprising literature review, interviews with Suffolk community members, synthesis of literature review and interview findings, pre-testing, pilot-testing, scale evaluation, and refinement. The present research will also investigate indices related to sleep satisfaction, including the community’s general health status, lifestyle factors and socio-economic status. The research will add to the limited, yet emerging body of research on perceived sleep satisfaction and its measurement. To our knowledge, a valid and reliable sleep satisfaction self-report measure has not been developed in the United Kingdom previously. (shrink)