Background and methods: Psychiatric research can occasionally present particular ethical dilemmas, but it is not clear what kind of problems local research ethics committees actually experience in this field. We aimed to assess the type of problems that committees encounter with psychiatric research, using a postal survey of 211 LRECs.Results: One hundred and seven of those written to replied within the time limit. Twenty eight experienced few problems with psychiatric applications. Twenty six emphasised the value of a psychiatric expert (...) on the committee. The most common issues raised were informed consent and confidentiality . The use of placebos , the validity of psychiatric questionnaires and overuse of psychiatric “jargon” in psychiatric applications also raised concern.Conclusions: Our results suggest that LRECs have specific concerns regarding methodology, consent, and confidentiality in psychiatric research, and that they find psychiatric input invaluable. (shrink)

BackgroundAssisted dying has wide support among the general population but there is evidence that those providing care for the dying may be less supportive. Senior doctors would be involved in implementing the proposed change in the law. We aimed to measure support for legalising physician assisted dying in a representative sample of senior doctors in England and Wales, and to assess any association between doctors' characteristics and level of support for a change in the law.MethodsWe conducted a postal survey (...) of 1000 consultants and general practitioners randomly selected from a commercially available database. The main outcome of interest was level of agreement with any change in the law to allow physician assisted suicide.ResultsThe corrected participation rate was 50%. We analysed 372 questionnaires. Respondents' views were divided: 39% were in favour of a change to the law to allow assisted suicide, 49% opposed a change and 12% neither agreed nor disagreed. Doctors who reported caring for the dying were less likely to support a change in the law. Religious belief was also associated with opposition. Gender, specialty and years in post had no significant effect.ConclusionMore senior doctors in England and Wales oppose any step towards the legalisation of assisted dying than support this. Doctors who care for the dying were more opposed. This has implications for the ease of implementation of recently proposed legislation. (shrink)

This paper identifies and discusses ethical issues associated with the increasingly common use of multiple reminders in postal survey research. When undertaking postal surveys, it is common to improve response rates by contacting survey recipients multiple times encouraging them to complete the questionnaire. The ethical implications of the use of multiple reminders are rarely discussed in the literature advocating their use. The paper briefly reviews the arguments encouraging use of multiple reminders, and identifies and discusses the potential (...) ethical issues raised by their use in postal surveys. A set of principles is then proposed for using multiple reminders in an ethically responsible way. It is argued that by following these principles, the use of multiple reminders should present no increased potential for harassment or coercion of survey recipients compared to alternative survey techniques. The use of these principles in a recent postal survey is then presented and discussed; a 60% response rate was achieved utilising multiple survey reminders in a way consistent with this set of principles. (shrink)

Objective—To demonstrate Japanese doctors' and nurses' attitudes towards and practices of voluntary euthanasia (VE) and to compare their attitudes and practices in this regard. Design—Postal survey, conducted between October and December 1999, using a self-administered questionnaire.Participants—All doctor members and nurse members of the Japanese Association of Palliative Medicine.Main outcome measure—Doctors' and nurses' attitude towards and practices of VE.Results—We received 366 completed questionnaires from 642 doctors surveyed (response rate, 58%) and 145 from 217 nurses surveyed (68%). A total of 54% (...) (95% confidence interval (CI): 49-59) of the responding doctors and 53% (CI: 45-61) of the responding nurses had been asked by patients to hasten death, of whom 5% (CI: 2-8) of the former and none of the latter had taken active steps to bring about death. Although 88% (CI: 83-92) of the doctors and 85% (CI: 77-93) of the nurses answered that a patient's request to hasten death can sometimes be rational, only 33% (CI: 28-38) and 23% (CI: 16-30) respectively regarded VE as ethically right and 22% (CI: 18-36) and 15% (CI: 8-20) respectively would practise VE if it were legal. Logistic regression model analysis showed that the respondents' profession was not a statistically independent factor predicting his or her response to any question regarding attitudes towards VE. Conclusions—A minority of responding doctors and nurses thought VE was ethically or legally acceptable. There seems no significant difference in attitudes towards VE between the doctors and nurses. However, only doctors had practised VE. (shrink)

Objectives: To discover the current state of opinion and practice among doctors in Victoria, Australia, regarding end-of-life decisions and the legalisation of voluntary euthanasia. Longitudinal comparison with similar 1987 and 1993 studies.Design and participants: Cross-sectional postal survey of doctors in Victoria.Results: 53% of doctors in Victoria support the legalisation of voluntary euthanasia. Of doctors who have experienced requests from patients to hasten death, 35% have administered drugs with the intention of hastening death. There is substantial disagreement among doctors concerning (...) the definition of euthanasia.Conclusions: Disagreement among doctors concerning the meaning of the term euthanasia may contribute to misunderstanding in the debate over voluntary euthanasia. Among doctors in Victoria, support for the legalisation of voluntary euthanasia appears to have weakened slightly over the past 17 years. Opinion on this issue is sharply polarised. (shrink)

Introduction Understanding the views of the public is essential if generally acceptable policies are to be devised that balance research access to general practice patient records with protection of patients' privacy. However, few large studies have been conducted about public attitudes to research access to personal health information. Methods A mixed methods study was performed. Informed by focus groups and literature review, a questionnaire was designed which assessed attitudes to research access to personal health information and factors that influence these. (...) A postal survey was conducted of an electoral roll-based sample of the adult population of Ireland. Results Completed questionnaires were returned by 1575 (40.6%). Among the respondents, 67.5% were unwilling to allow GPs to decide when researchers could access identifiable personal health information. However, 89.5% said they would agree to ongoing consent arrangements, allowing the sharing by GPs of anonymous personal health information with researchers without the need for consent on a study-by-study basis. Increasing age (by each 10-year increment), being retired and primary level education only were significantly associated with an increased likelihood of agreeing that any personal health information could be shared on an ongoing basis: OR 1.39 (95% CI 1.18 to 1.63), 2.00 (95% CI 1.22 to 3.29) and 3.91 (95% CI 1.95 to 7.85), respectively. Conclusions Although survey data can be prone to response biases, this study suggests that prior consent agreements allowing the supply by GPs of anonymous personal health information to researchers may be widely supported, and that populations willing to opt in to such arrangements may be sufficiently representative to facilitate valid and robust consent-dependent observational research. (shrink)

The article presents the results of an interdisciplinary (psychological, behavioral, sociological, urban) survey of residents of elite residential complexes of Odessa regarding theirs urban infrastructure preferences, as well as the degree of satisfaction with their place of residence. It was found that respondents are characterized by a high level of satisfaction with their place of residence. It was also revealed that the security criterion of the district is the main one for choosing a place of residence, which indicates the unmet (...) townspeople need for the general safety of the urban environment. Based on the obtained empirical data, an analysis of significant factors affecting the urban infrastructure preferences of residents from the point of view of the systemic concept of the social ecology of the city is conducted. Obtained data viewed that living in high-rise (multi-storey) buildings correlates with a low level of satisfaction, while low-rise buildings positively correlate with such significant aspects as the view from the window, a small number of neighbors, proximity to the sea, and effective house management. Multivariate regression revealed a positive relationship with such infrastructure objects as shopping and entertainment centers, postal services, places of family leisure, etc., which indicates the dominance of the consumer strategy in the behavior of the city resident. The collected empirical material served as the base for identifying the behavioral trends of the townspeople and allowed to simulate a qualitative profile of the activity of everyday support and personal development. (shrink)

Trust has been identified as an indicator within Social Quality theory. As an important component of social quality, trust has become increasingly important in modern society because literature suggests that trust in a number of democratic countries is declining. Modern technologies and specialties are often beyond the understanding of lay individuals and thus, the need for trusting relations between lay individuals and organizations/individuals has grown. The purpose of the study was to examine the extent to which Australians (dis)trust individuals and (...) organizations/institutions. A national postal survey was conducted with 1,044 respondents recruited using the electronic white pages directory. Findings from multivariate analyses suggest that income, age, sex, and health status are associated with trust in groups of individuals and trust in organizations/institutions. The findings highlight populations where trust needs to be (re)built. Future government policy and practice should utilize these findings as a means of facilitating social quality. (shrink)

This collection of essays is concerned with syntactic questions, with certain general features of grammatical theory related to syntax, here and there with semantic issues and quite a bit with questions of appropriate standards in pursuing research in the previously mentioned domains. It has almost nothing to say about phonology. The immediately following remarks are to be interpreted against the background of this restricted understanding of what ‘linguistic’ is here intended to denote.

Background In 2001 a report on the provision of clinical ethics support in UK healthcare institutions identified 20 clinical ethics committees. Since then there has been no systematic evaluation or documentation of their work at a national level. Recent national surveys of clinical ethics services in other countries have identified wide variation in practice and scope of activities. Objective To describe the current provision of ethics support in the UK and its development since 2001. Method A postal/electronic questionnaire (...) survey administered to the chairs of all 82 clinical ethics services registered with the UK Clinical Ethics Network in July 2010. Results Response rate was 62% with the majority of responding services situated in acute trusts. All services included a clinical ethics committee with one service also having a clinical ethicist. Lay members were present in 72% of responding committees. Individual case consultation has increased since 2001 with 29% of chairs spending more than 50% of their time on this. Access to and involvement in the process of case consultation is less for patients and families than for clinical staff. There is wide variation in committee processes and levels of institutional support. Over half of the responding committees undertook some form of evaluation. Conclusion Clinical ethics services in the UK are increasing as is their involvement in case consultation. However, the significant variation in committee processes suggests that further qualitative research is needed to understand how these committees function and the role they play in their institution. (shrink)

Objectives To examine the frequency and characteristics of decisions to forgo artificial nutrition and/or hydration at the end of life.Design Postal questionnaire survey regarding end-of-life decisions to physicians certifying a large representative sample of Belgian death certificates in 2007.Setting Flanders, Belgium, 2007.Participants Treating physicians of deceased patients.Results Response rate was 58.4%. A decision to forgo ANH occurred in 6.6% of all deaths . Being female, dying in a care home or hospital and suffering from nervous system diseases or malignancies (...) were the most important patient-related factors positively associated with a decision to forgo ANH. Physicians indicated that the decision to forgo ANH had had some life-shortening effects in 77% of cases. There had been no consultation with the patient in 81%, mostly due to incapacity . The family, colleague physicians and nurses were involved in decision making in 76%, 41% and 62%, respectively.Conclusions A substantial number of deaths are preceded by a decision to forgo ANH in Belgium. These decisions, ethically laden and involving a considerable chance of life shortening, are mostly not preceded by discussion with the patient despite existing patient rights legislation. It is recommended that physicians and patients and their families alike dedicate ample time to the discussion of treatment options and communication about the possibility of forgoing ANH and that this discussion takes place earlier as part of overall end-of-life care planning rather than at the very end of life. (shrink)

In lieu of an abstract, here is a brief excerpt of the content:Buddhist-Christian Studies 20 (2000) 263-265 [Access article in PDF] Book Review The Silent Dialogue: Zen Letters to a Trappist Monk Zen Spirit, Christian Spirit: The Place of Zen in Christian Life The Silent Dialogue: Zen Letters to a Trappist Monk. By David G. Hackett. New York: Continuum, 1996. 157 pp. Zen Spirit, Christian Spirit: The Place of Zen in Christian Life. By Robert E. Kennedy. New York: Continuum, 1997. (...) 144 pp. Two very different books recently published by Continuum seem to complement each other in unexpected ways. Father Kennedy, Catholic Zen Teacher, Jesuit Priest, openly shares with us his own journey into unknowing and self-emptying. As he notes in his preface, "what I looked for in Zen was not a new faith, but a new way of being Catholic that grew out of my own lived experience..." (p. 13). David Hackett, now an associate professor of religion, freely shares his youthful search for genuine spiritual experience. His book is drawn from correspondence from the 1970s with Father Thomas Keating and the monks of the St. Joseph's Abbey during his two-year stay in Japan. Hackett says in his Prologue, "I became a Catholic through Zen meditation..." (p. 17). In both cases, rather than threaten or diminish their Christian faith, Zen practice served as a wonderful "can-opener," prying off lids of rigid ideas and concepts, allowing the depth of the spirit to be more deeply experienced.Part I of Zen Spirit, Christian Spirit, addressed primarily to the Christian reader, offers an excellent introduction into Buddhism, Zen, and the essential elements of practice. In this section Kennedy has reflected the questions Christians have asked during the years he taught at the Zen Community of New York. His teacher there, Bernard Tetsugen Glassman Roshi, clarifies in the foreword Father Kennedy's position as a lay Zen Teacher who remains a Catholic priest. Kennedy weaves a consistent thread of Christian contemplative teachings side by side with the Zen teachings, making very visible the fact that Zen reminds us, as do Eckhart, Merton, and many other contemplatives, that the highest point of our Christian mysticism is reached not in the experience that I know God or that I love God--not in any I-Thou experience--but in the experience that God lives in us (p. 36).The book has been structured according to the four stages of human growth: knowledge, love, purification, and union. These stages have been likened to the stages of alchemy: lead, quicksilver, sulphur, and gold--these four elements provide Kennedy with his titles for the four parts of his book. This very structure makes clear that the goal of both Christian mysticism and Zen practice is transformation of being. With a firm foundation of knowledge and teachings from both traditions, then it is time to actually enter the fire of practice itself. I am reminded of the stages of practice outlined in the ancient Chinese Zen ox-herding pictures. The herdsman sets out with some knowledge, longing for his True Nature. He sees traces--footprints in the sand--and a deep yearning, the quicksilver of desire and inspiration, begins to ache in his heart. As he begins to see and experience his own True Nature, he must pass through the fire of struggle, surrender, deep letting go, until finally both herdsman [End Page 263] and ox disappear, self-emptying is complete in Union. There are no shortcuts. Jesus and Buddha both have invited us to practice radical poverty. Kennedy states, "The poverty of not clinging, not projecting, not finding shelter, and not seeking parallel lives, can lead us to the deepest intimacy of all" (p. 114).Kennedy received his early formative Zen training under Koun Yamada Roshi, a beloved and deeply appreciated teacher, in Kamakura. His Roshi offered a style of practice which utilized the koan (rationally unsolvable question or paradox) to provoke the student into a direct experience rather than an explanation or idea about it. Kennedy Sensei has shared his insight into many... (shrink)

Objectives To explore attitudes and reasoning among Swedish physicians and the general public regarding the withdrawal of life-sustaining treatment at a competent patient's request. Design A vignette-based postal questionnaire including 1202 randomly selected individuals in the county of Stockholm and 1200 randomly selected Swedish physicians with various specialities. The vignettes described patients requesting withdrawal of their life-sustaining treatment: (1) a 77-year-old woman on dialysis; (2) a 36-year-old man on dialysis; (3) a 34-year-old ventilator-dependent tetraplegic man. Responders were asked to (...) classify the act of terminating treatment and to prioritise arguments for/against. Results A majority in both groups prioritised arguments in favour of terminating treatment and classified the act as defensible in all vignettes. However, among the general public, 16% classified the act as euthanasia in all vignettes; among physicians this view was most expressed regarding ventilator treatment (26%). Some who classified the act as euthanasia prioritised arguments in favour of terminating treatment: among physicians 18% in vignette 1, 19% in vignette 2 and 34% in vignette 3; among the general public 35% in vignette 1, 20% in vignette 2 and 48% in vignette 3. Conclusion There is a widespread consensus regarding competent patients' right to abstain from life-sustaining treatment. An association between the hastening of death, caused by the withdrawal of life-sustaining treatment and the concept of euthanasia is proposed. The results also suggest that classifying the withdrawal of life-sustaining treatment as ‘euthanasia’ does not necessarily mean that the act is interpreted as ethically unacceptable. (shrink)

Background: The offer of aggregate study results to research participants following study completion is increasingly accepted as a means of demonstrating greater respect for participants. The attitudes of research ethics board chairs towards this practice, although integral to policy development, are unknown.Objectives: To determine the attitudes of REB chairs and the practices of REBs with respect to disclosure of results to research participants.Design: A postal questionnaire was distributed to the chairs of English-language university-based REBs in Canada. In total, 88 (...) REB chairs were eligible. The questionnaire examined respondents’ attitudes towards offering participants completed study results, methods for delivering this information, and barriers to disclosing results.Findings: The response rate was 89.8%. Chairs were highly supportive of offering results to research participants. Only 19.5% of chairs responded that a policy or guideline that governed the return of research results to participants existed at their institution. Most chairs supported the idea of their REB instituting a set of guidelines recommending that researchers offer results to participants in a lay format. Chairs identified the major impediments to the implementation of programmes offering to return results to participants as being financial cost and retaining contact with research participants .Conclusions: University-based REB chairs overwhelmingly support the offer of research results to participants. This is incongruent with the frequent lack of existing REB guidelines recommending this practice. REBs should support guidelines that diminish identified barriers and promote consistency in offering to return results. (shrink)

Background: Medicine is full of value conflicts. Limited resources and legal regulations may place doctors in difficult ethical dilemmas and cause moral distress. Research on moral distress has so far been mainly studied in nurses. Objective: To describe whether Norwegian doctors experience stress related to ethical dilemmas and lack of resources, and to explore whether the doctors feel that they have good strategies for the resolution of ethical dilemmas. Design: Postal survey of a representative sample of 1497 Norwegian doctors (...) in 2004, presenting statements about different ethical dilemmas, values and goals at their workplace. Results: The response rate was 67%. 57% admitted that it is difficult to criticise a colleague for professional misconduct and 51% for ethical misconduct. 51% described sometimes having to act against own conscience as distressing. 66% of the doctors experienced distress related to long waiting lists for treatment and to impaired patient care due to time constraints. 55% reported that time spent on administration and documentation is distressing. Female doctors experienced more stress that their male colleagues. 44% reported that their workplace lacked strategies for dealing with ethical dilemmas. Conclusion: Lack of resources creates moral dilemmas for physicians. Moral distress varies with specialty and gender. Lack of strategies to solve ethical dilemmas and low tolerance for conflict and critique from colleagues may obstruct important and necessary ethical dialogues and lead to suboptimal solutions of difficult ethical problems. (shrink)

The relationship between animal ownership and owners' health has received increasing attention in the recent human-companion animal literature. This article considers a new aspect of the human-companion animal relationship, that of compatibility between pet and owner. Compatibility is viewed as the fit between the animal and the owner on physical, behavioral, and psychological dimensions. A postal survey was used to test the hypothesis that compatibility has influences on physical and mental health that are independent of those due to owners' (...) level ofpet attachment and human social support. A sample group of 176 pet owners completed a questionnaire containing a new measure of compatibility as well as standard measures of pet attachment, human social support, and mental and physical health. Results of multiple regression analyses indicated that people who are relatively more compatible with their pets report better mental health overall and fewer physical symptoms. Social support was positively associated with mental health. Pet attachment was also positively associated with mental health, but negatively with physical health. (shrink)

Although euthanasia has been a pressing ethical and public issue, empirical data are lacking in Japan. We aimed to explore Japanese nurses’ attitudes to patients’ requests for euthanasia and to estimate the proportion of nurses who have taken active steps to hasten death. A postal survey was conducted between October and December 1999 among all nurse members of the Japanese Association of Palliative Medicine, using a self-administered questionnaire based on the one used in a previous survey with Australian nurses (...) in 1991. The response rate was 68%. A total of 53% of the respondents had been asked by patients to hasten their death, but none had taken active steps to bring about death. Only 23% regarded voluntary active euthanasia as something ethically right and 14% would practice it if it were legal. A comparison with empirical data from the previous Australian study suggests a significantly more conservative attitude among Japanese nurses. (shrink)

Background and Aims The prevalence of religious faith among doctors and its relationship with decision-making in end-of-life care is not well documented. The impact of ethnic differences on this is also poorly understood. This study compares ethnicity and religious faith in the medical and general UK populations, and reports on their associations with ethically controversial decisions taken when providing care to dying patients. Method A postal survey of 3733 UK medical practitioners, of whom 2923 reported on the care of (...) their last patient who died. Findings Specialists in care of the elderly were somewhat more likely to be Hindu or Muslim than other doctors; palliative care specialists were somewhat more likely to be Christian, religious and ‘white’ than others. Ethnicity was largely unrelated to rates of reporting ethically controversial decisions. Independently of speciality, doctors who described themselves as non-religious were more likely than others to report having given continuous deep sedation until death, having taken decisions they expected or partly intended to end life, and to have discussed these decisions with patients judged to have the capacity to participate in discussions. Speciality was independently related to wide variations in the reporting of decisions taken with some intent to end life, with doctors in ‘other hospital’ specialities being almost 10 times as likely to report this when compared with palliative medicine specialists, regardless of religious faith. Conclusions Greater acknowledgement of the relationship of doctors' values with clinical decision-making is advocated. (shrink)

Objectives To determine the role played by law in medical specialists9 decision-making about withholding and withdrawing life-sustaining treatment from adults who lack capacity, and the extent to which legal knowledge affects whether law is followed. Design Cross-sectional postal survey of medical specialists. Setting The two largest Australian states by population. Participants 649 medical specialists from seven specialties most likely to be involved in end-of-life decision-making in the acute setting. Main outcome measures Compliance with law and the impact of legal (...) knowledge on compliance. Results 649 medical specialists (of 2104 potential participants) completed the survey (response rate 31%). Responses to a hypothetical scenario found a potential low rate of legal compliance, 32% (95% CI 28% to 36%). Knowledge of the law and legal compliance were associated: within compliers, 86% (95% CI 83% to 91%) had specific knowledge of the relevant aspect of the law, compared with 60% (95% CI 55% to 65%) within non-compliers. However, the reasons medical specialists gave for making decisions did not vary according to legal knowledge. Conclusions Medical specialists prioritise patient-related clinical factors over law when confronted with a scenario where legal compliance is inconsistent with what they believe is clinically indicated. Although legally knowledgeable specialists were more likely to comply with the law, compliance in the scenario was not motivated by an intention to follow law. Ethical considerations (which are different from, but often align with, law) are suggested as a more important influence in clinical decision-making. More education and training of doctors is needed to demonstrate the role, relevance and utility of law in end-of-life care. (shrink)

Objectives: Treatment decisions in ethically complex situations are known to depend on a physician's personal characteristics and medical experience. We sought to study variability in decisions to withdraw or withhold specific life-supporting treatments in terminal care and to evaluate the association between decisions and such background factors.Design: Readiness to withdraw or withhold treatment options was studied using a terminal cancer patient scenario with alternatives. Physicians were asked about their attitudes, life values, experience, and training; sociodemographic data were also collected.Setting: Finnish (...) physicians, postal survey.Survey sample: Five hundred general practitioners, 300 surgeons, 300 internists, and 82 oncologists.Results: Treatments most often forgone were blood transfusion and thrombosis prophylaxis . Least willingly abandoned were intravenous hydration and supplementary oxygen . Female doctors were less likely to discontinue thrombosis prophylaxis and supplementary oxygen , but more readily x ray and laboratory examinations. Young doctors were more likely to continue antibiotics , thrombosis prophylaxis , supplementary oxygen and laboratory tests . Oncologists comprised the specialty most ready to forgo all studied treatments except antibiotics and blood transfusion. The family's wishes significantly increased treatment activity. Young and female practitioners and oncologists were most influenced by family appeal. Advance directives made decisions significantly more reserved and uniform. Different factors in the physician's background were found to predict decisions to withdraw antibiotics or IV hydration.Conclusion: The considerable variation observed in doctors' decisions to forgo specific life-sustaining treatments was seen to depend on their personal background factors. Experience, supervision, and postgraduate education seemed to be associated with more reserved treatment decisions. To increase the objectivity of end of life decisions, training, and research are of prime significance in this ethically complex area of medicine. (shrink)

Objective: To describe the frequency of support for terminal sedation among internists, determine whether support for terminal sedation is accompanied by support for physician assisted suicide , and explore characteristics of internists who support terminal sedation but not assisted suicide.Design: A statewide, anonymous postal survey.Setting: Connecticut, USA.Participants: 677 Connecticut members of the American College of Physicians.Measurements: Attitudes toward terminal sedation and assisted suicide; experience providing primary care to terminally ill patients; demographic and religious characteristics.Results: 78% of respondents believed that (...) if a terminally ill patient has intractable pain despite aggressive analgesia, it is ethically appropriate to provide terminal sedation . Of those who favoured terminal sedation, 38% also agreed that PAS is ethically appropriate in some circumstances. Along a three point spectrum of aggressiveness in end of life care, the plurality of respondents were in the middle, agreeing with terminal sedation but not with PAS. Compared with respondents who were less aggressive or more aggressive, physicians in this middle group were more likely to report having more experience providing primary care to terminally ill patients and attending religious services more frequently .Conclusions: Support for terminal sedation was widespread in this population of physicians, and most who agreed with terminal sedation did not support PAS. Most internists who support aggressive palliation appear likely to draw an ethical line between terminal sedation and assisted suicide. (shrink)

Objectives: To examine the experiences of spousal care givers of Alzheimer patients to disclosure of dementia diagnosis and subsequent care.Methods: A random sample of 1943 spousal care givers of people receiving medication for Alzheimer disease was sent a cross-sectional postal survey about their opinions on the disclosure of dementia and follow-up care. A smaller qualitative study included open-ended questions concerning their experiences of the same topics.Results: The response rate for the survey was 77%. Of the respondents, 1214 of 1434 (...) acknowledged themselves as their spouse’s care giver. The mean age of the care givers was 78.2 years, and that of demented spouses, 80.5 years. Of the care givers, 63% were women. The couples had long-lasting marriages. Of the care givers, 93% reported that dementia had been disclosed openly to their spouse; 97% also preferred that physicians openly inform the patients of the dementia diagnosis, although 55% of their spouses with AD had developed depressive symptoms after the disclosure. Of the care givers, 71% felt they had received sufficient information about dementia. However, only 50% estimated that their spouses’ follow-up care had been well organised. The responses in the qualitative study indicated that many care givers felt grief and anxiety. They also expressed feelings of loneliness and uncertainty about how to deal with follow-up care for dementia.Conclusions: Elderly spousal care givers were quite satisfied with the information given them about dementia. However, the support with regard to the follow-up care of care-giving families failed to meet their needs adequately. (shrink)

Objectives To determine the frequencies and types of limitation of medical treatment performed by physician members of the German Society for Palliative Medicine and to analyse the findings with respect to clinical and ethical aspects of end-of-life practices. Design Cross-sectional postal survey. Setting Data collection via the secretary of the German Society for Palliative Medicine using the German language version of the EURELD survey instrument. Subjects All 1645 physician members of the German Society for Palliative Medicine. Main outcome measures (...) Types and frequencies of limitation of treatment and possible determinants. Results 901 physicians participated in the study (response rate 55.8%). Participants reported limitation of treatment in 69.1% of cases. These decisions most often affected artificial nutrition (19%), chemotherapy (14%), antibiotics (11%) and medication other than antibiotics (11%). In the majority of eligible cases, physicians estimated the life-shortening effect of limitation of treatment to be <7 days. However, estimations differ depending on the medical measures in question. Bivariate statistical analysis indicated that withholding of treatment was performed significantly more frequently for patients aged ≥65 years (p=0.019). In addition, there were significant associations between the incidence of limitation of treatment and the different diseases reported by respondents as the underlying cause of death. Conclusion The findings of this study provide information on the current state of an ethically and clinically challenging aspect of clinical practice and can serve as a starting point for further interdisciplinary research on normative and empirical aspects of treatment decision-making at the end of life. (shrink)

Objective: To assess the knowledge of four groups of individuals regarding who is legally authorised to consent to health care or research involving older patients.Design: A provincewide postal survey.Setting: Province of Quebec, Canada.Participants: Three hundred older adults, 434 informal caregivers of cognitively impaired individuals, 98 researchers in aging and 136 members of research ethics boards .Measurements: Knowledge was assessed through a pretested postal questionnaire comprising five vignettes that describe hypothetical situations involving an older adult who requires medical care (...) or is solicited for research. The respondent had to identify the person who is legally authorised to provide consent.Results: Nearly 80% of all respondents provided the correct answer when the hypothetical scenario depicted a person who was competent to consent or incompetent but legally represented. Knowledge was worse for the scenario describing a research situation that involved an incompetent adult without a legal guardian.Conclusion: The observed lack of knowledge raises doubts about the ability of current legislation to truly protect the rights of older adults with diminished decision making capacity. It points to the need for educational programmes aimed at increasing public awareness of the legislation put in place for those requiring special protection. (shrink)

Background Payment of research participants helps to increase recruitment for research studies, but can pose ethical dilemmas. Research ethics committees (RECs) have a centrally important role in guiding this practice, but standardisation of the ethical approval process in Ireland is lacking. Aim Our aim was to examine REC policies, experiences and concerns with respect to the payment of participants in research projects in Ireland. Method Postal survey of all RECs in Ireland. Results Response rate was 62.5% (n=50). 80% of (...) RECs reported not to have any established policy on the payment of research subjects while 20% had refused ethics approval to studies because the investigators proposed to pay research participants. The most commonly cited concerns were the potential for inducement and undermining of voluntary consent. Conclusions There is considerable variability among RECs on the payment of research participants and a lack of clear consensus guidelines on the subject. The development of standardised guidelines on the payment of research subjects may enhance recruitment of research participants. (shrink)

The transition from university to working life appears a critical period impacting human service workers’ long-term health. More research is needed on how psychological factors affect the risk. We aimed to investigate how subgroups, based on self-efficacy, psychological flexibility, and basic psychological needs satisfaction ratings, differed on self-rated health, wellbeing, and intention to leave. A postal survey was sent to 1,077 recently graduated psychologists in Sweden, response rate 57.5%, and final sample 532. A hierarchical cluster analysis resulted in a (...) satisfactory eight-cluster solution. We identified two at-risk subgroups, displaying the lowest scores on health and wellbeing, and one potential low-risk subgroup with the highest ratings on said variables. The “Low risk?” group rated high on all three psychological constructs, a positive transition to working life, a work environment where resources balanced relatively high emotional demands, good health, and wellbeing. Almost the complete opposite ratings characterized the potential risk groups. “Quitting?” scored significantly higher than “Getting sick?” on self-efficacy and psychological flexibility as well as actively seeking new employment and reporting daily thoughts on leaving the profession. We suggest that a combination of low self-efficacy and psychological flexibility could increase the risk of individuals staying despite suboptimal working conditions. With combined higher self-efficacy and psychological flexibility, individuals in similar circumstances appear more inclined to quit. We conclude that the ways recently graduated psychologists rate their self-efficacy, psychological flexibility, and basic needs satisfaction appear to be reflected in their self-rated health and wellbeing. (shrink)

On the basis of the research literature, five aspects of the extreme right-wing ideology were distinguished : racism, extreme ethnic nationalism, the preference for a strong leadership, anti-parliamentarianism, and an anti-left attitude. The data of a postal survey in the spring of 1991 of a representative sample of the Flemish population in Belgium show that the items with which these extreme right-wing topics were operationalized show a one dimensional structure. About 10% to 25% of the interviewees agree with the (...) individual items and about 20% of the subjects scored on the extreme right-wing side of the scale. The 'hardcore' of extreme right-wing respondents is, however, much smaller, and does not seem to be higher in Flanders than in most of the surrounding countries. The right-wing extremism scale developed correlates as expected with a previously developed typology that integrates the attitude with respect to autochthons and allochthons. The analysis confirms that the voters for the Vlaams Blok - taken as a whole - may not be considered right-wing extremists, as suggested by previous research. Right-wing extremism correlates with a large number of attitudes and seems to be embedded in the broader opinion dimension of socio-cultural conservatism. This may also explain why it is associated primarily with the age, educational level, and religiosity of the respondents. (shrink)

Background: Establishment of Sri Lankan Twin Registry demanded development of ethical guidelines, as an effective ethical framework was not available in Sri Lanka. Design: Objectives were to find out whether the ombudsman concept exists in current informed consent practices and to investigate opinion about ombudsmen. We searched Pub Med, conducted a postal survey, and monitored Internet discussion. Results: The responses were categorized into current practices and existing models in informed consent process, reservations expressed about current practices, arguments supporting the (...) concept, concerns and issues, alternatives, and how to implement the proposal. The concept of a third person is not entirely novel. How to find a truly independent person, the financial implication, confidentiality, obligations, and liabilities of ombudsmen, also emerged. Conclusions: The concept of an ombudsman is conceptually and ethically sound and acceptable but the challenges posed by this very same solution to creating a better process of informed consent will have to be faced. (shrink)

The experiences of students taking the same courses in the humanities by distance learning were compared when tutorial support was provided conventionally or online . The Course Experience Questionnaire and the Revised Approaches to Studying Inventory were administered in a postal survey to 1264 students taking two different courses with the UK Open University. There were no significant differences between the students who received face-to-face tuition and those who received online tuition either in their perceptions of the academic quality (...) of their courses or in the approaches to studying that they adopted on those courses. Provided that tutors and students receive appropriate training and support, course designers in the humanities can be confident about introducing online forms of tutorial support in campus-based or distance education. (shrink)

Objectives—This study examined the issue of confidentiality in relation to i) undergraduate curriculum content in physiotherapy, and ii) the awareness, experiences and attitudes of clinical physiotherapists.Design—Postal survey of universities and focus group interviews with physiotherapists.Setting—Twenty-five universities in the UK and Ireland and 44 therapists in five hospitals in southern England.Results—The survey of universities indicated that legal and ethical aspects of confidentiality featured in virtually all preregistration courses that responded. However, whereas its inclusion was rated as extremely important, the degree (...) of coverage of confidentiality varied considerably between courses. Within the focus groups, 35 informants recollected coverage of confidentiality in their preregistration education, and 12 in postregistration in-service training; in neither case was this coverage in great detail. Informants identified environmental factors and working practices as barriers to preserving confidentiality. Disclosure to others also gave rise to difficulties. Informants were only aware in general terms of the relevant sections of the Chartered Society of Physiotherapy's Rules of Professional Conduct.Conclusions—Aspects of hospital-based physiotherapy practice were seen to create specific problems in relation to confidentiality. More detailed sources of education and guidance on this issue appear to be required. (shrink)