Confidentiality or continuity? Family caregivers' experiences with care for HIV/AIDS patients in home-based care in Lesotho

In the context of poor access to antiretroviral therapies in sub-Saharan Africa, the minimum treatment package intended to treat opportunistic infections common with HIV infection is inadequate but appealing, since it presumes universal coverage of medical care for patients living with HIV and AIDS. The overall objective of this study was to analyse the challenges which family caregivers encountered in home-based care when they tried to access medical treatment for home-based AIDS patients in the context of confidentiality and limited medical care. A qualitative study using in-depth interviews with a sample of 21 family caregivers — 16 females and 5 males aged between 23 and 85 years was conducted with the assistance of health personnel in two hospitals in Lesotho. Using the concept of continuity of care, this article discusses the experiences of family caregivers about home care, including their experiences of adherence to confidentiality by health care professionals and non-disclosure of AIDS as the context of illness, the circumstances under which the caregivers initiated caregiving and sought medical care, and how these factors could be stressors in caregiving. There was continuity of care where the caregivers obtained hospital support. However, when confidentiality was adhered to the caregivers were frustrated by lack of information, disrupted treatment, exclusion of their perspectives in medical care, failure to secure hospitalisation, ambiguous goals and non-responsiveness, so that continuity of care was jeopardised. Thus it can be concluded that professional-assisted disclosure benefited the patients because it facilitated continuity of care through the caregivers.     

The Protection of the Patient’s Private Life: the Computer Challenge Second part ()

Today, medical practice is invaded by a growing number of technologies of all kinds, among which computer techniques have an important place. Although they have significant advantages, for instance in terms of medical record management, they give rise to several problems, particularly concerning the confidentiality of the patient’s data with regards to third party. A great number of specific provisions, complementary to the general texts protecting private life (examined in the first part of this two parts article), endeavour to solve these problems. It is true that these provisions are recent, have various origins and often appear as rules difficult to understand. Yet, they are partially inspired by a common logic. Relying on these common features, the authors make two suggestions for the future, in order to avoid that the growing computerisation of medical practice eventually destabilises the health care relationship:

a) Any dictatorship of confidentiality must be rejected

b) Stimulating a sense of professionalism is most likely the way to avoid an anarchic and unrealistic development of rules aimed at regulating the health care relationship.     

Barriers to workplace HIV testing in South Africa: a systematic review of the literature

Low workplace HIV testing uptake makes effective management of HIV and AIDS difficult for South African organisations. Identifying barriers to workplace HIV testing is therefore crucial to inform urgently needed interventions aimed at increasing workplace HIV testing. This study reviewed literature on workplace HIV testing barriers in South Africa. Pubmed, ScienceDirect, PsycInfo and SA Publications were systematically researched. Studies needed to include measures to assess perceived or real barriers to participate in HIV Counselling and Testing (HCT) at the workplace or discuss perceived or real barriers of HIV testing at the workplace based on collected data, provide qualitative or quantitative evidence related to the research topic and needed to refer to workplaces in South Africa. Barriers were defined as any factor on economic, social, personal, environmental or organisational level preventing employees from participating in workplace HIV testing. Four peer-reviewed studies were included, two with quantitative and two with qualitative study designs. The overarching barriers across the studies were fear of compromised confidentiality, being stigmatised or discriminated in the event of testing HIV positive or being observed participating in HIV testing, and a low personal risk perception. Furthermore, it appeared that an awareness of an HIV-positive status hindered HIV testing at the workplace. Further research evidence of South African workplace barriers to HIV testing will enhance related interventions. This systematic review only found very little and contextualised evidence about workplace HCT barriers in South Africa, making it difficult to generalise, and not really sufficient to inform new interventions aimed at increasing workplace HCT uptake.     

加强病案保密制度与保护患者隐私权的探讨

病案是医院重要的信息资源,在病案中包含了公民大量的个人隐私。本文强调加强病案保密管理、保护患者隐私的重要性和必要性,列举了医疗机构存在的泄露患者隐私的表现,提出了加强病案保密管理的制度建设、完善病案管理立法、加强病案管理人员专业和法律知识培训、教育医务人员恪守职业道和法律责任;完善政府对公民隐私权立法等五方面加强病案保密管理、保护患者隐私权的对策建议。     

Patient perspectives on medical confidentiality

OBJECTIVE: To lay the groundwork for a better understanding of patient views on medical confidentiality. DESIGN: Studies were found by searching medline, bioethicsline, and selected bibliographies. Articles concerning physician perspectives or implications of legal and administrative regulations were excluded. Only peer-reviewed journal articles reporting original research on patients' confidentiality views and conduct were included. MAIN RESULTS: Many patients are unaware of or misunderstand their legal or ethical right to medical confidentiality protections, which leads them to both over- and underestimate confidentiality protections. The possibility that medical information might be revealed, intentionally or not, to acquaintances in a clinic or other social community troubles patients as much as information release to insurers or employers. A significant minority of patients distrust confidentiality protections, leading some to report that they delay or forgo medical care. If doubtful that confidentiality will be upheld, patients will act independently to protect information. CONCLUSIONS: Our review found a wider variety of understandings and beliefs about medical confidentiality among patients than are often indicated in the writings of practitioners or legal experts. As medical confidentiality regulations evolve, these differences need to be recognized and accounted for in interactions between practitioners and patients.     

Ethics and medical genetics in the United States. A national survey

The approaches of 295 medical geneticists in the United States to 14 clinical problems and 3 screening situations that required a moral choice aresummarized. These data are part of a survey of 682 geneticists in 19 nations. Of 490 U.S. geneticists asked to participate, 295 (60%) returned anonymous detailed questionnaires. There was strong (> 75%) consensus that preserving the mother's confidentiality overrides disclosure of true paternity; that conflicting test results, new/controversial interpretations of results, and ambiguous/artifactual results should be disclosed; that artificial insemination by donor, adoption, taking chances, contraception, sterilization, and in-vitro fertilization with a donor egg should be presented as reproductive options to carriers of disorders not diagnosable prenatally; that prenatal diagnosis should be performed for patients who refuse abortion and for maternal anxiety in the absence of medical indications; that screening in the workplace should be voluntary. There was no consensus about disclosure of a diagnosis of Huntington disease or hemophilia A to relatives at risk, against the patient's wishes, or about disclosure of parental translocations. Geneticists in the U.S. differed from 18 other nations in presenting surrogate motherhood as an option (67%); willingness to perform prenatal diagnosis for sex selection or refer (62%); and disclosure of XY genotype in a female (62%). Men were more likely than women to say that they would give directive counseling. Women were more likely than men to say that they would perform prenatal diagnosis for maternal anxiety or for sex selection.     

论医学伦理学的自主性原则

自主性原则是对个人的自主和自由的尊重,其核心是对人权的尊重,包含有知情同意、保密、隐私等具体规则.自主性原则根源于强调个性自由和选择的自由主义道德传统,虽为西方医学伦理学所倡导,但我国古代哲人也提出过相近乃至相同的看法.