Ethical and practical challenges in implementing informed consent in HIV/AIDS clinical trials in developing or resource-limited countries

Background/rationale: Ethical issues regarding HIV/AIDS human research in the developing world remain under continuous evaluation; a critical area of concern includes informed consent. This paper reviews several of the most important ethical and practical aspects of informed consent in HIV research in developing countries. Enhancement of overall understanding of such key issues might promote higher ethical standards of future research.Objectives: The major objective was to address informed consent in human research in non-Western societies, and specifically in HIV clinical trials of affected adults. Secondary end-points included the consent complexities in HIV research involving vulnerable patient populations in resource-limited nations, such as children, adolescents and women.Methods: A systematic review of the published literature using MEDLINE and EMBASE from 1998 until December 2008 was performed, using the search terms ‘HIV/AIDS’, ‘informed consent’, ‘clinical trials’, ‘developing world’.Results: Ethical complexities such as participants’ diminished autonomy, coercion or monetary inducement, language difficulties, illiteracy or lack of true understanding of the entire study, cultural barriers mainly due to communitarianism and social diversities were identified in the 44 studies reviewed. Informed consent of vulnerable patient populations must be tailored to their sex and developmental age, while counselling is fundamental. Children and adolescents’ assent must be ensured. Local language is to be used, while trusted community leaders and local cultural representatives may convey information.Discussion: Despite the heterogeneity of studies, similarities were  identified. Providing adequate and comprehensive information and assessing the true understanding of the research represent fundamental prerequisites. Potential solutions to the critical areas of concern include peer counselling and meetings with local community leaders or local cultural representatives. Conclusions: International investigators of HIV human research should bear in mind these ethical issues and their potential solutions, when trying to ensure ethical research conduct, based on a truly informed and culturally relevant consent

The living dead? Perception of persons in the unresponsive wakefulness syndrome in Germany compared to the USA

Steppacher I, Kißler J. The living dead? Perception of persons in the unresponsive wakefulness syndrome in Germany compared to the USA. BMC Psychology. 2018;6(5): 5.Background The extent to which people ascribe mind to others has been shown to predict the extent to which human rights are conferred. Therefore, in the context of disorders of consciousness (DOC), mind ascription can influence end of life decisions. A previous US-American study indicated that participants ascribed even less mind to patients with unresponsive-wakefulness-syndrome (UWS) than to the dead. Results were explained in terms of implicit dualism and religious beliefs, as highly religious people ascribed least mind to UWS. Here, we addresses mind ascription to UWS patients in Germany. Methods We investigate the perception of UWS patients in a large German sample (N = 910) and compare the results to the previous US data, addressing possible cultural differences. We further assess effects of medical expertise, age, gender, socio-economic status and subjective knowledge about UWS in the German sample. Results Unlike the US sample, German participants did not perceive UWS patients as “more dead than dead”, ascribing either equal (on 3 of 5 items) or more (on 2 items) mental abilities to UWS patients than to the dead. Likewise, an effect of implicit dualism was not replicated and German medically trained participants ascribed more capabilities to UWS patients than did a non-medical sample. Within the German sample, age, gender, religiosity and socio-economic status explained about 15% of the variability of mind ascription. Age and religiosity were individually significant predictors, younger and more religious people ascribing more mind. Gender had no effect. Conclusion Results are consistent with cross-cultural differences in the perception of UWS between Germany and the USA, Germans ascribing more mind to UWS patients. The German sample ascribed as much or more but not less mind to a UWS patient than to a deceased, although within group variance was large, calling for further research. Mind ascription is vital, because, in times of declining resources for healthcare systems, and an increasing legalization of euthanasia, public opinion will influence UWS patients’ rights and whether ‘the right to die’ will be the only right conceded to them

The influence of sense of control and cognitive functioning in older cancer patients' depression

Objective: This study aimed to evaluate the associations between depression, sense of control, and cognitive functioning, as well as the predictive power of sense of control and cognitive functioning in older cancer patients' depression. Methods: Eighty-six cancer patients were referred to a palliative care unit. They completed the 15-item Geriatric Depression Scale, the Cancer Locus of Control, and the Mini Mental State Examination questionnaires. Results: Higher perceived control over the 'course of illness' was associated with higher levels of depressive symptoms (p>0.0005), whereas lower perceived control over the 'cause of illness' was associated with higher depressive symptoms. The same results were found for 'cause of illness' between non-depressed and depressed patients (p = 0.001). Multivariate analysis revealed that whereas an external orientation in 'course of illness' increased the likelihood of depression (p = 0.002), an external orientation in 'cause of illness' decreased the likelihood of depression (p = 0.05). Conclusions: Older cancer patients' sense of control orientation over the course of illness and the cause of illness predicted the levels of depressive symptomatology. Copyright © 2014 John Wiley & Sons, Ltd

Elderly cancer patients' psychopathology: A systematic review aging and mental health

This review of the literature on elderly cancer patients and their psychiatric disorders was undertaken to determine the extent of the problem. It consists of articles with elderly cancer patients. Keyword terms included "cancer", "elderly", "aging", "geriatric", "psychiatric disorders", "psychiatric symptoms", "psychological problems", "aged >60 years", "sucidal ideation, geriatric, cancer", "suicide geriatric cancer". We conducted searches on the following databases: PubMed; PsychINFO (1980-2013); finally, 102 publications were suitable for the current review. Depression in elderly cancer patients is the most common disorder in elderly cancer patients associated with disability, morbidity and mortality. Anxiety disorders may be less frequent in geriatric patients; however, it seemed to be a major problem in late life. Psychiatric disorders are common in geriatric patients with cancer especially at advanced stages of the disease. In addition, health care professionals can help provide treatment and emotional support. Future research should aim to provide data about the real prevalence and severity of psychiatric disorders in elderly patients with cancer, for the improvement of patients' quality of life and their caregivers. © 2014 Elsevier Ireland Ltd

Prostate cancer presenting with normal serum PSA levels and boney metastases treated with zoledronic acid

Prostate specific antigen (PSA) is currently the most widely used tumor marker for diagnosing and monitoring prostate cancer. Serum PSA level greater than 10 ng/mL is considered a negative predictor for the presence of bone metastases and routine use of bone scans is therefore avoided. This report describes two cases of patients presenting with normal PSA levels (0-4 ng/mL) and positive bone scans. The value of routine use of bone scintigraphy in the follow up of these cases is therefore questioned here. Moreover the addition of bisphosphonates to the androgen deprivation treatment, achieved not only pain relief and improvement in aspects of quality of life, but also provided radiographic evidence of management of metastatic bone disease. © 2005 by The Haworth Press, Inc. All rights reserved

Depression as a Mediator or Moderator Between Preparatory Grief and Sense of Dignity in Patients With Advanced Cancer

The objectives of the study were to evaluate the relationship between depression, preparatory grief, and loss of dignity in patients with advanced cancer and whether depression has a mediator and/or a mediator role between preparatory grief and dignity. The participants were 120 patients with advanced cancer who completed the Greek version of the Patient Dignity Inventory, the Greek Hospital Anxiety and Depression Scale, and the Preparatory Grief in Advanced Cancer Patients questionnaire. Depression was highly correlated with preparatory grief and loss of dignity. Additionally, strong relationship was found between preparatory grief and loss of dignity. Mediation analyses revealed that preparatory grief influenced loss of dignity as well as indirectly by its effect on depression. However, there was not any affect of depression as moderator. The effect of depression on preparatory grief in patients with advanced cancer and dignity emphasizing the need for further research to confirm the current relationship as well as the need for treatment of depression. © The Author(s) 2019

The evolution of euthanasia and its perceptions in Greek culture and civilization

Death has preoccupied humanity since before the dawn of civilization. As a multidimensional and moral problem, the end of life has concerned different civilizations, and different approaches to euthanasia, or “good death,” have been developed in each culture. In Greece, there is a long record of the culture’s evolving attitudes toward death and euthanasia. A more widespread knowledge of the views and traditions surrounding the act of euthanasia can contribute to a better understanding of the controversies surrounding modern attitudes and practice

Cancer information disclosure in different cultural contexts

The relationship between truth telling and culture has been the subject of increasing attention in the literature. The issue of whether, how and how much to tell cancer patients concerning diagnosis is still approached differently depending on country and culture. The majority of physicians tell the truth more often today than in the past, in both developed and developing countries, but most of them prefer to disclose the truth to the next of kin. Nurses in Anglo-Saxon countries are considered to be the most suitable health-care professionals for the patients to share their thoughts and feelings with. Nevertheless, in most other cultures the final decision on information disclosure lies with the treating physician. Regardless of cultural origin, the diagnosis of cancer affects both family structure and family dynamics. In most cases patients’ families, in an effort to protect them from despair and a feeling of hopelessness, exclude the patient from the process of information exchange. The health-care team-patient relationship is a triangle consisting of the health-care professional, the patient and the family. Each part supports the other two and is affected by the cultural background of each of the others as well as the changes that occur within the triangle

The families evaluation on management, care and disclosure for terminalstage cancer patients

Background: Quality of life is an important concept which is subjective and personal; what is an acceptable quality of life to one may be 'worse than death' to another. The objective of this study was to develop and validate a questionnaire to assess relatives' perceptions and attitudes towards their terminal stage cancer patients' management (information disclosure, treatment choice, hospitalization and support-communication and care) including aspects regarding end-of-life and quality-of-life decisions. Methods: The final study consisted of 146 relatives of advanced terminal stage cancer patients receiving palliation, attending a Pain Relief and Palliative Care Unit. The questionnaire incorporated 6 multi-item and 7 single-item scales, and was developed following a systematic review of measures appropriate for use in palliative care settings. Results: Following analysis of the 25-item scale, the questionnaire has been validated as a shortened 21-item scale consisting of 5 multi-item and 5 single-item scales. Factor analysis was based upon information disclosure, hospitalization, and support-communication demonstrating Cronbach's alpha coefficients of 0.66, 0.5 and 0.70 respectively. Average item totals and inter-item scale correlations were between 0.62-0.70, with convergent validity correlations between 0.60-0.86. The questionnaire was well accepted by all subjects with an 8-10 minute completion time. Conclusion: The shortened 21-item self-assessment questionnaire may provide acceptable and valid assessment of caregiver(s)/Greek cancer patients' relatives perceptions on palliative care