German questionnaires assessing quality of life and psycho-social status in people with epilepsy: Reliable change and intercorrelations.

OBJECTIVES: People with epilepsy (PWE) not only suffer from seizures but also from various psycho-social issues containing facets such as social functioning, anxiety, depression or stigmatization, and consequently quality of life. (1) Assessing reliable change of these issues is crucial to evaluate their course and potential treatment effects. As most psycho-social self-report questionnaires have been validated in separate samples, their clinical-socio-demographic differences may limit the comparability and generalizability of the scales' internal consistency, which is important for the reliable change index (RCI). Using a co-normalized approach, we provide the internal consistency and RCIs for a large set of questionnaires targeting quality of life (QOLIE-31-P), depressive symptoms (NDDI-E), anxiety (GAD-7), seizure severity (LSSS), subjective antiseizure medication adverse events (LAEP), stigma, epilepsy-related fear, and restrictions in daily life (PESOS), and subjective cognition (FLei). As for some German versions of these measures, psychometric data is still missing, we also add important information for the German language area. (2) In addition, knowledge about intercorrelations of these constructs is needed to shape questionnaire usage and treatment approaches. We thus investigate associations of these scales and compare weighted and unweighted subscales of the QOLIE-31-P. METHODS: In our prospective study, 202 adult in-patients of the Epilepsy-Center Berlin-Brandenburg with a reliable diagnosis of epilepsy filled out a set of self-report questionnaires between 03/2018 and 03/2021. We calculated Cronbach's α, RCIs, and bivariate intercorrelations and compared the respective correlations of weighted and unweighted scales of the QOLIE-31-P. RESULTS: For most of the scales, good to excellent internal consistency was identified. Furthermore, we found intercorrelations in the expected directions with strong links between scales assessing similar constructs (e.g., QOLIE-31-P Cognition and FLei), but weak relationships between measures for different constructs (e.g., QOLIE-31-P Seizure worry and FLei). The QOLIE-31-P Total score was highly correlated with most of the other scales. Some differences regarding their correlational patterns for weighted and unweighted QOLIE-31-P scales were identified. CONCLUSIONS: Psycho-social constructs share a large amount of common variance, but still can be separated from each other. The QOLIE-31-P Total score represents an adequate measure of general psycho-social burden.

An ethical assessment of powered exoskeletons: Implications from clinical use to industry and military contexts.

Exoskeletons are technologies that can help to increase or improve mobility, dexterity, and strength. They can be used as assistive devices, to restore lost affordances, or for rehabilitation. While mechanical exoskeletons are passive and rely on the body's power for movement, powered exoskeletons are active mechanical systems that can assist or enhance a user's capacity, including in strength and performance. They also offer scope to augment or enhance beyond simple medical support, with potential in the future for superhuman power and strength. While these technologies present promising clinical opportunities, including for those who want to regain walking capacity, they also bring ethical questions, such as about data privacy and accessibility. In addition, the physical features of the technology can prove mentally, physically, and financially demanding, and may be deployed in contexts where user choice and autonomy is constrained. In this article, we discuss these issues, and raise some pertinent ethical questions, not all of which can be easily answered. We touch upon medical and therapeutic uses, for industrial and workplace settings, and in military contexts specially, given these are contexts where such technology may be required or even imposed. We argue that reasonable optimism for such technologies needs to be tempered by sufficient ethical assessment to identify and address barriers to research, development, and use. As well as managing any impacts and expectations for the health and wellbeing of users, the potential impact on autonomy and the risk of coercion, we have to consider what kind of data may be recorded or used, and the risk that these technologies could exacerbate existing inequalities or harms.

Perceptions of gender equity among critical care and other health professionals: A cross-sectional survey.

OBJECTIVE: The objective of this study was to determine the association between gender and perceived gender equity in the critical care workforce and other health specialties. DESIGN AND SETTING: We conducted an online cross-sectional survey between September and November 2020. Data on demographics and perceptions of equity including the representation of women across departments and in leadership roles, knowledge of and access to flexible work practices and carers leave, and opportunities for promotion were collected. PARTICIPANTS: The study population included health professionals from critical care (defined as intensive care and emergency) and other specialties. We conducted a descriptive gender-disaggregated analysis. RESULTS: A total of 478 respondents (70% women) completed the survey. The mean age of respondents was 43.9 ± 11.2 years. Approximately half of respondents were medical practitioners (n = 235, 54%), followed by nurses (n = 135, 36%)-the remainder were from other professions. The critical care workforce accounted for 280 (64%) of responder practice settings. Statistically significant differences were reported between genders on issues such as having confidence that their department would resolve equity issues (87 [70.7%] men vs. 146 [48.2%] women; p = 0.007), access to flexible work practices (5/124 [4.0%] men vs. 20/305 [6.6%] women p = 0.001), and taking unpaid leave for carer responsibilities (91 [30.3%] women vs 9 [7.4%] men, p < 0.001). CONCLUSIONS: This work highlights differences in how men and women perceive gender equity, particularly in the critical care workforce. These findings are important to understand health care practitioners' perceptions of gender equity, as these perceptions inform behaviour.

Ethical, legal, organizational and social issues related to the use of scalp cooling for the prevention of chemotherapy-induced alopecia: A systematic review.

INTRODUCTION: Scalp cooling (SC) aims to prevent chemotherapy-induced alopecia. The goal of this systematic review is to tackle ethical, legal, organizational and social issues related to SC. METHODS: A critical appraisal of the literature was carried out using a systematic review design. MEDLINE, Embase and Web of Science databases were searched up until 2 June 2021. Studies addressing these aspects in English or Spanish were considered. Representatives of both patient associations and professional scientific societies related to the topic participated in the design of the protocol and the review of the findings. RESULTS: A total of 17 studies were included. Articles were critically appraised using the MMAT and SANRA. Findings were organized into four categories: (1) ethical aspects focused on equal access, gender equity and doctor-patient communication supported by Patient Decision Aids (PtDAs); (2) patient perspective and acceptability; (3) professional perspective and acceptability; (4) organizational aspects focused on accessibility and feasibility. CONCLUSION: Cancer patients' expectations when using SC need to be adjusted to reduce the potential distress associated with hair loss. PtDAs could help patients clarify their values and preferences regarding SC. Equal access to technology should be guaranteed. PATIENT OR PUBLIC CONTRIBUTION: In this systematic review, the representatives of the patient associations (Ms. María Luz Amador Muñoz of the Spanish Association Against Cancer [AECC] and Ms. Catiana Martinez Cánovas of the Spanish Breast Cancer Federation [FECMA]) participated in the review of the study protocol, as well as in the results, discussion and conclusions, making their contributions. In the type of design of these studies (systematic reviews), it is not usual to have the direct participation of patients, but in this one, we have done so, as it is a systematic review that is part of a report of the Spanish Network of Health Technology Assessment Agencies (ETS).

To donate or not to donate? Future healthcare professionals' opinions on biobanking of human biological material for research purposes.

BACKGROUND: Over the last few decades biobanks have been recognised as institutions that may revolutionise biomedical research and the development of personalised medicine. Poland, however, still lacks clear regulations regarding the running of biobanks and the conducting of biomedical research. While the awareness of the general public regarding biobanks is low, healthcare professions and medical students also lack basic knowledge regarding biobanks, and such ignorance may affect their support for biobanks. METHODS: This study is aimed at assessing the knowledge and attitudes of future healthcare professionals towards the donation of human biological material for research purposes and is based on a sample of 865 Polish medical students at Poznan University of Medical Sciences. RESULTS: This research has shown that the awareness of medical students' regarding biobanks is low. It has also shown that while the majority of future healthcare professionals enrolled in this study supported the idea of biobank research and declared themselves willing to donate, still many students felt ambivalent about the biobanking of human biological material for research purposes and expressed concerns over biobanking research. While the primarily motivation to participate in biobank research was the desire to help advance science and to develop innovative therapies, the most common reason for a refusal was the fear that the government, insurance companies or employers, might have access to the samples. Concerns over unethical use of samples and data safety were also prevalent. More than half of students opted for a study-specific model of consent and only a few opted for broad consent. CONCLUSIONS: This research suggests that a lack of knowledge about biobanks, their role and activities may affect medical students' support for biobanks and their active participation in the collection and management of biospecimens for research purposes. Since in the future medical, nursing and pharmacy students will be involved in the collection, storage, testing and analysis of biospecimens from their patients, medical students in all professional fields should be trained regarding the concept, purposes and operational procedures of biobanks, as well as the ethical, legal and social implications of biobank research.

Aboriginal and Queer Identity/ies in Western Australia: When There is a Need to Know in Therapeutic Settings.

A central question for the exploratory Aboriginal and LGBTQ+ researcher led project 'Breaking the Silence: Being Indigenous and identifying LGBTQ+' (Breaking the Silence) is how provision of genuinely inclusive service responses for Aboriginal and Torres Strait Islander people identifying as LGBTQ+ can be developed. This article presents the qualitative findings of this mixed-methods research project to show how organizational staff working in health, education and social support services in Western Australia consider the Aboriginal LGBTQ+ identity/experience. Analysis of the written, interview and focus group responses to a question about the relevance of LGBTQ+ identity show that these questions need to be considered and evaluated within diverse service cultures and philosophies of services. Staff views are diverse and organizational consensus on the relevance (or not) of LGBTQ+ identity needs to be the precursor before the development or consideration of changes to service delivery and models.

Achieving Calm: A Study on the Health Care Experiences of People With Lived Experience of Homelessness in Central Texas.

The experiences of care of people with lived experience of homelessness are rarely embraced to change care delivery. We conducted qualitative group and one-on-one interviews utilizing experience group methodology with 27 people with lived experience of homelessness currently housed in one permanent housing community in central Texas. We analyzed data using an inductive thematic approach to identify shared obstacles and barriers to receiving health care. We then analyzed findings with the capability, comfort, and calm value framework to identify health outcomes that matter most to study participants. Poor access to care, discontinuities in care, distrust in providers, and confusing terminology were identified as the biggest barriers to health. The overwhelming majority of experiences reflected poor health outcomes of calm, the outcome of a health care experience that adds ease to one's life rather than logistical and administrative chaos. We propose three practical approaches to achieve calm for this population as follows: systems-level embracement of compassionate care, integration of relationship-based care navigation into all levels of care, and building efficient transportation into care design. We conclude that designing health care that works in the lives of people with lived experience of homelessness is critical to address the gaps in care that fuel the health disparity these individuals face compared to people without this lived experience.

Ethics, Guidelines, Standards, and Policy: Telemedicine, COVID-19, and Broadening the Ethical Scope.

The coronavirus crisis is causing considerable disruption and anguish. However, the COVID-19 pandemic and consequent explosion of telehealth services also provide an unparalleled opportunity to consider ethical, legal, and social issues (ELSI) beyond immediate needs. Ethicists, informaticians, and others can learn from experience, and evaluate information technology practices and evidence on which to base policy and standards, identify significant values and issues, and revise ethical guidelines. This paper builds on professional organizations' guidelines and ELSI scholarship to develop emerging concerns illuminated by current experience. Four ethical themes characterized previous literature: quality of care and the doctor-patient relationship, access, consent, and privacy. More attention is needed to these and to expanding the scope of ethical analysis to include health information technologies. An applied ethics approach to ELSI would addresses context-specific issues and the relationships between people and technologies, and facilitate effective and ethical institutionalization of telehealth and other health information technologies.

Family visitation policies, facilities, and support in Australia and New Zealand intensive care units: A multicentre, registry-linked survey.

OBJECTIVE: The objective of this study was to describe family visitation policies, facilities, and support in Australia and New Zealand (ANZ) intensive care units (ICUs). METHODS: A survey was distributed to all Australian and New Zealand ICUs reporting to the Australian and New Zealand Intensive Care Society Centre for Outcomes and Resources Evaluation Critical Care Resources (CCR) Registry in 2018. Data were obtained from the survey and from data reported to the CCR Registry. For this study, open visiting (OV) was defined as allowing visitors for more than 14 h per day. SETTING AND PARTICIPANTS: This study included all Australian and New Zealand ICUs reporting to CCR in 2018. MAIN OUTCOME MEASURES: The main outcome measures were family access to the ICU and visiting hours, characteristics of the ICU waiting area, and information provided to and collected from the relatives. FINDINGS: Fifty-six percent (95/170) of ICUs contributing to CCR responded, representing 44% of ANZ ICUs and a range of rural, metropolitan, tertiary, and private ICUs. Visiting hours ranged from 1.5 to 24 h per day, with 68 (72%) respondent ICUs reporting an OV policy, of which 64 (67%) ICUs were open to visitors 24 h a day. A waiting room was part of the ICU for 77 (81%) respondent ICUs, 74 (78%) reported a separate dedicated room for family meetings, and 83 (87%) reported available social worker services. Most ICUs reported facilities for sleeping within or near the hospital. An information booklet was provided by 64 (67%) ICUs. Only six (6%) ICUs required personal protective equipment for all visitors, and 76 (80%) required personal protective equipment for patients with airborne precautions. CONCLUSIONS: In 2018, the majority of ANZ ICUs reported liberal visiting policies, with substantial facilities and family support.

Perceptions of older adults? Measuring positive, negative, and physical descriptors using the stereotype content and strength survey.

The COVID-19 pandemic has disproportionately impacted the health of older adults. In addition to a higher risk for serious illness and death, the societal value of senescent adults was challenged. There have been conflicting results reported in the research literature regarding positive and negative stereotypes of older adults, and areliable and valid assessment tool to measure content (existence of astereotype) and strength (intensity of astereotype) is unavailable. To address issues with instruments employed to measure ageist stereotypes, researchers developed the Stereotypes Content and Strength Survey. University students (n=483) were directed to "think about their perceptions of older adults" and indicate how many they believed could be described using the terms listed on a5-point Likert-type scale from none-all. Response categories for each descriptive item were dichotomized into 1 = "some, most or all" and 0 = "none or few." Based on an odds analyses of 117 items, 84 met the content criteria to be considered astereotype regarding older adults. Using the criteria for strength, items were categorized into 36 "strong," 25 "moderate," and 23 "weak" stereotypes. Assessing the content and strength of stereotypic beliefs using this procedure may contribute to major bias influencing ageist perceptions.

The full spectrum of ethical issues in pediatric genome-wide sequencing: a systematic qualitative review.

BACKGROUND: The use of genome-wide sequencing in pediatric medicine and research is growing exponentially. While this has many potential benefits, the normative and empirical literature has highlighted various ethical issues. There have not been, however, any systematic reviews of these issues. The aim of this systematic review is to determine systematically the spectrum of ethical issues that is raised for stakeholders in in pediatric genome-wide sequencing. METHODS: A systematic review in PubMed and Google Books (publications in English or German between 2004 and 2021) was conducted. Further references were identified via reference screening. Data were analyzed and synthesized using qualitative content analysis. Ethical issues were defined as arising when a relevant normative principle is not adequately considered or when two principles come into conflict. RESULTS: Our literature search retrieved 3175 publications of which 143 were included in the analysis. Together these mentioned 106 ethical issues in pediatric genome-wide sequencing, categorized into five themes along the pediatric genome-wide sequencing lifecycle. Most ethical issues identified in relation to genome-wide sequencing typically reflect ethical issues that arise in general genetic testing, but they are often amplified by the increased quantity of data obtained, and associated uncertainties. The most frequently discussed ethical aspects concern the issue of unsolicited findings. CONCLUSION: Concentration of the debate on unsolicited findings risks overlooking other ethical challenges. An overarching difficulty presents the terminological confusion: both with regard to both the test procedure/ the scope of analysis, as well as with the topic of unsolicited findings. It is important that the genetics and ethics communities together with other medical professions involved work jointly on specific case related guidelines to grant the maximum benefit for the care of the children, while preventing patient harm and disproportionate overload of clinicians and the healthcare system by the wealth of available options and economic incentives to increase testing.

Developing Suicide Safety Protocols for Qualitative Research as a Universal Equity Practice.

Qualitative research offers a range of approaches to elucidate the health and social experiences of populations and communities that are historically oppressed and repressed, yet is not without ethical and practical challenges that may have unintended consequences and added risks for certain individuals and communities. As a result of experiences of trauma and environmental factors, many oppressed and repressed populations have disproportionately high rates of suicide, but there are no widely accepted standards or best practices for addressing suicidality while conducting qualitative research. We describe an example of a qualitative interview during which a participant reported thoughts of suicide, even though the study topic was not directly related to mental health or suicide. We describe how the research team responded and present a framework for developing suicide safety protocols when conducing qualitative research with oppressed and repressed populations.

"Connection to Culture Is Like a Massive Lifeline": Yarning With Aboriginal Young People About Culture and Social and Emotional Wellbeing.

Culture is an important social and emotional wellbeing factor for Aboriginal peoples in Australia, particularly regarding recovery from colonization. However, little is understood about how culture and wellbeing interact for young urban Aboriginal people. This study used Yarning methods to explore experiences and perceptions of culture and wellbeing for young urban Aboriginal people in Narrm, Australia. Findings indicate that culture is experienced as connection, and that perceived connection or disconnection has an essential influence on the wellbeing of young people. Through sharing young people stories, a range of factors, including colonization, relationships, cultural knowledge, community support, and agency, were identified as affecting perceptions of connectedness, and therefore on wellbeing. Youth were able to develop strategies to increase connection and provided illuminating advice and suggestions for improving connection for future generations. This study thus contributes to efforts to improved understanding of Aboriginal perspectives about social and emotional wellbeing and culture.

Problematizing "Planning Ahead": A Cross-Cultural Analysis of Vietnamese Health and Community Workers' Perspectives on Advance Care Directives.

Informed by values of autonomy and self-determination, advance care planning assumes that individuals should independently take control of their future health. In this article, we draw on research conducted with Vietnamese health and community workers to problematize individualized approaches to planning ahead, reframe notions of "cultural and linguistic barriers," and expose how homogeneous messages about care at the end of life are not readily translatable within and across diverse groups. Anthropological and feminist critiques of inclusion and exclusion are used to reorientate Anglophone framings of the individual and of cultural and linguistic differences. In this article, we suggest that it is the narrow singularity of care for the self-rather than diverse relationalities of care-that should be overcome if aging and end-of-life care policy and practice is to be broadened and made relevant to migrant and non-English-speaking groups.

The Impact of Binational Barriers to Medical Care on the Care-Seeking Practices of Mexican Immigrants.

Barriers to health care access faced by Mexican immigrants in the United States have been well-documented, including lack of insurance, fear of deportation, and language barriers. However, little is known about this population's care-seeking experiences before migration. In this article, I use a life-course approach to explore binational isolation from health care and the ways in which early-life experiences pattern Mexicans' care-seeking practices in the United States. This ethnographic research project took place in Tucson, Arizona, between 2013 and 2014 and used semistructured interviews with service providers and first-generation Mexican immigrants. The majority of participants faced significant barriers to medical care in Mexico, which resulted in low rates of care utilization and heavy reliance on lay modalities. Immigrants faced an even broader array of barriers to care in the United States, and their lack of prior health care access further discouraged care utilization and compromised their medical care experiences after migration.

Quantifying anthropogenic threats affecting Marine Protected Areas in developing countries.

Conservation's capacity to deal with anthropogenic environmental threats within Marine Protected Areas (MPAs) varies enormously, especially in developing countries that are often immersed in weak enforcement, ineffective management and shortages of resources. A deeper understanding of the causes of these threats is fundamental for identifying effective management solutions. Here, we investigate the presumptive drivers of environmental threats across 40 Brazilian MPAs. We categorized and quantified environmental threats from two independent sources: i) the results of systematic social surveys carried out as part of WWF's RAPPAM assessment, as primary data source, and; ii) data gathered from news media articles related to the MPAs (secondary data source). We identified 461 reports of threats that we classified into three general categories: overexploitation, urbanization and land use threats. The presence of overexploitation threats was strongly associated with extreme poverty of local communities close to the MPAs. Threats also seem to be more frequent in category V MPAs, which in Brazil are Environmental Protection Areas (EPA), with multiple use objectives. Threats were concentrated on the North and Southeast coasts of Brazil. We found that data from news media can be used for qualitative assessment of threats, but has limited potential for quantification. Our findings highlight the need for policy makers and MPA managers to adopt a broader perspective that considers the role of social inequalities in promoting and exacerbating environmental threats. While recognizing that conservation has limited capacity to address the widespread social inequalities found in many tropical developing countries, if the socioeconomic context of local communities is significantly compromising conservation efforts it may be necessary to target and prioritize social interventions as a prerequisite for effective MPA management and governance.

Understanding the Role of Past Health Care Discrimination in Help-Seeking and Shared Decision-Making for Depression Treatment Preferences.

As a part of a larger, mixed-methods research study, we conducted semi-structured interviews with 21 adults with depressive symptoms to understand the role that past health care discrimination plays in shaping help-seeking for depression treatment and receiving preferred treatment modalities. We recruited to achieve heterogeneity of racial/ethnic backgrounds and history of health care discrimination in our participant sample. Participants were Hispanic/Latino (n = 4), non-Hispanic/Latino Black (n = 8), or non-Hispanic/Latino White (n = 9). Twelve reported health care discrimination due to race/ethnicity, language, perceived social class, and/or mental health diagnosis. Health care discrimination exacerbated barriers to initiating and continuing depression treatment among patients from diverse backgrounds or with stigmatized mental health conditions. Treatment preferences emerged as fluid and shaped by shared decisions made within a trustworthy patient-provider relationship. However, patients who had experienced health care discrimination faced greater challenges to forming trusting relationships with providers and thus engaging in shared decision-making processes.

European Electronic Personal Health Records initiatives and vulnerable migrants: A need for greater ethical, legal and social safeguards.

The effective collection and management of personal data of rapidly migrating populations is important for ensuring adequate healthcare and monitoring of a displaced peoples' health status. With developments in ICT data sharing capabilities, electronic personal health records (ePHRs) are increasingly replacing less transportable paper records. ePHRs offer further advantages of improving accuracy and completeness of information and seem tailored for rapidly displaced and mobile populations. Various emerging initiatives in Europe are seeking to develop migrant-centric ePHR responses. This paper highlights their importance and benefits, but also identifies a number of significant ethical, legal and social issues (ELSI) and challenges to their design and implementation, regarding (1) the kind of information that should be stored, (2) who should have access to information, and (3) potential misuse of information. These challenges need to be urgently addressed to make possible the beneficial use of ePHRs for vulnerable migrants in Europe.

Framing plagiarism as a disease heightens students' valuation of academic integrity.

Prior research based on conceptual metaphor theory has explored how metaphorical language subtly influences how people perceive social issues. For instance, rhetoric comparing a perceived problem to a disease has been used historically to generate support for a wide array of measures proposed to "treat" the problem, and recent experimental work demonstrates the efficacy of this approach. The current paper extends this literature by looking at the use of disease metaphor in a novel domain: student perceptions of plagiarism on campus. We found that participants (N = 365) exposed to a disease-metaphoric description of plagiarism on campus perceived it to be a more severe problem and, as a result, were more supportive of a variety of anti-plagiarism policies. This mediational analysis further demonstrates the far-reaching practical significance of metaphor.

Returning negative results to individuals in a genomic screening program: lessons learned.

PURPOSE: In genomics, the return of negative screening results for rare, medically actionable conditions in large unselected populations with low prior risk of disease is novel and may involve important and nuanced concerns for communicating their meaning. Recruitment may result in self-selection because of participants' personal or family history, changing the characteristics of the screened population and interpretation of both positive and negative findings; prior motivations may also affect responses to results. METHODS: Using data from GeneScreen, an exploratory adult screening project that targets 17 genes related to 11 medically actionable conditions, we address four questions: (1) Do participants self-select based on actual or perceived risk for one of the conditions? (2) Do participants understand negative results? (3) What are their psychosocial responses? (4) Are negative results related to changes in reported health-related behaviors? RESULTS: We found disproportionate enrollment of individuals at elevated prior risk for conditions being screened, and a need to improve communication about the nature of screening and meaning of negative screening results. Participants expressed no decision regret and did not report intention to change health-related behaviors. CONCLUSION: This study illuminates critical challenges to overcome if genomic screening is to benefit the general population.