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PubMed2005

Privacy concerns of patients and nurse practitioners in primary care--an APRNet study.

PURPOSE: This study explores and compares the privacy concerns of primary care nurse practitioners (NPs) and their patients. DATA SOURCES: Privacy concerns were identified in separate focus groups of NPs and patients, and then parallel survey instruments were designed and administered to 27 NPs and 185 of their patients. All subjects were recruited through APRNet, a regional practice-based research network of NPs in southern New England encompassing 58 practices. CONCLUSIONS: Both groups demonstrated high levels of concern regarding privacy. While NPs and patients had similar levels of concern about most issues, there were some notable differences regarding breeches because of carelessness, disclosures for research, and which disorders require the most care in maintaining privacy. IMPLICATIONS FOR PRACTICE: These results allow NPs to anticipate patient privacy concerns and to enhance trust in the clinical relationship. These results also indicate the need to educate patients regarding privacy rights and expectations.

Adult↗
PubMed1994

Dental-care experiences of people living with HIV/AIDS in Aotearoa New Zealand.

Previous surveys of people living with HIV/AIDS suggest that such persons may have difficulty in securing dental care and that some dentists would prefer to refer such individuals. This study aimed to assess the experiences of people living with HIV/AIDS in Aotearoa New Zealand in obtaining and undergoing dental treatment. Survey forms were distributed through organisations working with people with HIV/AIDS. Fifty-seven questionnaires were analysed. The majority of respondents were gay white males. Seventy-five percent of participants felt that dental care was important, or very important, and 37 percent had increased the frequency of visits to the dentist since being diagnosed as HIV-positive. Forty-two (74 percent) participants had disclosed their HIV status to their dentists. Of this group, the majority had experienced either supportive or sympathetic reactions. Of those who concealed their status, 31 percent feared rejection by the dental practitioner, and 31 percent felt the dentist was taking adequate precautions and that there was no need to volunteer information on HIV status. Only three people reported denial of treatment on the grounds of their HIV status. An additional two people were immediately referred on by their practitioner after disclosure. Almost half the participants had changed dentists after they were diagnosed as HIV-positive. The main reasons stated included cost of treatment, fear of breach of confidentiality, or shifting to a new centre. Even though 33 percent received dental care in a hospital environment, 63 percent suffered systemic manifestations of HIV-infection, and 51 percent had oral manifestations.(ABSTRACT TRUNCATED AT 250 WORDS)

Adult↗
PubMed1999

The radiologist and the patient: breaking bad news.

Radiologists may be asked to disclose results directly to patients. Studies of radiologist-patient communication show that radiologists have a direct responsibility to their patients, that many patients wish to learn the results of imaging tests from the radiologist at the time of the examination, and that many referring physicians support the principle of radiologists disclosing results when patients ask for them. In some areas, such as breast imaging and interventional radiology, disclosure by radiologists is very common. The authors, who work in a perinatology unit in which obstetrical ultrasonography is performed, have developed a template to help them with the often-emotional interactions associated with pregnancy failure. They recommend that radiologists inform the patient clearly of the examination results, choosing everyday words such as "miscarriage" and "pregnancy." They also recommend that physicians show compassion, acknowledge patients' grief and inform the referring physician as soon as possible. These steps should be part of a policy of direct, honest communication with patients.

Female↗
PubMed1998

Reality and danger in psychoanalytic treatment.

In recent papers there has been considerable interest in the disclosure of the analyst's erotic countertransference. In our view this discussion touches a more fundamental issue: must something "real" take place between analyst and patient in order for real change to occur? And if what takes place is "real," will it not be dangerous and potentially destructive? Tracing the history of psychoanalytic understandings of what is "real" in the patient's life and what is "real" in the transference, we explore these questions in a clinical vignette and discuss the implications of this issue for our understanding of the process of psychoanalytic treatment.

Countertransference↗
PubMed1995

Corporate compliance and voluntary disclosure.

In any event, the decision to institute a corporate compliance program is a relatively simple one. In view of the ambiguity surrounding certain fraud and abuse provisions, and the corporate "death sentence" that may result from program exclusion, a compliance program is always sound corporate policy. To be sure, if the compliance program is administered improperly, it can actually increase the likelihood of whistleblower actions and create a body of potentially hurtful documentation. But these dangers can be minimized by structuring the program to protect the self-evaluative process through relevant privileges. The risks also pale in comparison to the exposure to criminal or exclusionary sanctions when improper conduct goes undetected by an organization.

Durable Medical Equipment↗
PubMed2002

HIPAA privacy: the compliance challenges ahead.

This Article reviews the HIPAA Privacy Standards' impact on healthcare organizations. It discusses whether a healthcare organization is a "Covered Entity" under the regulations, what information the Privacy Standards protect, what restrictions the regulations place on the use and disclosure of protected health information, what individual rights the Privacy Standards create, and what agreements they require between healthcare organizations and their business associates. The author provides relatively extensive guidance to organizations that are embarking upon their voyage of compliance with these broadly applicable regulations, but notes that the full extent of necessary compliance remains unclear, pending DHHS issuance of the next iteration of the rulemaking in this area. The Article was finalized in January 2002, before HHS issued any modifications to the Privacy Standards.

Access to Information↗
PubMed1996

Theoretical aspects of AIDS in children.

It is estimated that world-wide approximately 13 million adults and at least 1 million children already have the HIV virus. Projections call for another twenty or thirty million new infections in the 1990s. Stresses that generally accompany chronic illnesses have been well identified. Also well known are the unique series of concerns that adult AIDS patients and their caretakers experience. Of children who are born to HIV infected mothers, the prevalent mode of transmission of the HIV infection, 30 per cent have been found to be infected and of these approximately 12-15 per cent will develop AIDS. This paper focuses on children at risk in urban environments, where other social problems such as poverty and drug use complicate the picture. It reviews psycho-social issues associated with AIDS, such as, knowledge and "disclosure" of infection status, problems of healthy siblings, "kinship care", problems of professionals engaged with this population, etc. Ethical guidelines as well as recommendations for policy and services are also presented which can protect and assist affected children and their families, and the professionals working with them. For children, there is a unique inter-connectedness, medical, developmental and psychasocial needs at all ages, that has to be taken into account as the illness modifies developmental progress and creates an altered social milieu.

Adolescent↗
PubMed1998

Working through the public disclosure process mandated by use of 21 CFR 50.24 (exception to informed consent): guidelines for success.

New Food and Drug Administration guidelines allow research to be done under an "exception to informed consent." These guidelines mandate advance public disclosure (PD) but provide no specifics for how to accomplish this task. This report outlines the history of informed consent in emergency care situations, highlights the Food and Drug Administration regulations for an exception to informed consent, and describes a stepwise approach with specific details of a PD program for a study using a blood substitute. This descriptive report can serve as a guideline for subsequent emergency care investigators in the development of a strategic plan for PD.

Algorithms↗
PubMedDate not supplied

Disclosure of sexual abuse. The secret is out--what now?

The sexual abuse of a child is a well-kept secret. Disclosure creates difficulties for the child, the family, and sometimes for the professionals working with them. A multidisciplinary, multiagency model is one method to facilitate care and recovery for the child victim. Each agency and service has a different purpose and goal. Cooperative coordination and communication are the keys to case management with reduced psychological trauma for the child and family. Child psychiatric nurses can be effective members of the child abuse health team model. Advocacy roles also can be developed by nurses who work with sexual victimization through the avenues of media, writing, committee membership and research.

Child↗
PubMedDate not supplied

Exploring the nature of informed consent in coronary care practice.

The nature of informed consent is bound within legal and moral duties. An analysis of informed consent includes the elements of understanding, disclosure, competence, voluntariness and authorisation, all of which can be affected by a variety of factors. Nurses can make a unique contribution to informed consent situations either as advocates, interpreters, coordinators, witnesses or culture brokers. In order to fulfill their obligations to the patient and manage potential conflicts, nurses need to have a substantial awareness to the diversity of issues and pitfalls. Communication skills and building a therapeutic alliance with the patient are at the heart of nursing care. Nurses are taking on duties previously associated with medical practice-it is unclear how this affects their roles as information givers.

Communication↗
PubMed1993

Disclosing the cancer diagnosis. Procedures that influence patient hopefulness.

BACKGROUND: Physicians view enhancing patient hopefulness as a critical aspect of cancer treatment, yet little is known about how the circumstances of the initial disclosure of a cancer diagnosis affects this important psychosocial variable. The authors examined the extent to which various forms of physician disclosure of a cancer diagnosis are seen by patients as more or less hopeful and as favorable or unfavorable. METHODS: Statements describing various circumstances of diagnostic disclosure were generated from interviews with 10 physicians and 10 patients with cancer. Fifty-seven statements were rated on two bipolar rating scales describing hopefulness and favorability by an additional 56 patients with recent onset of cancer. To determine if overall emotional adjustment to the illness affected these ratings, scores on the Mental Adjustment Scale were also obtained. RESULTS: Results revealed that patients had clear ideas about which procedures were most and least hopeful and favorable or unfavorable, that the ratings demonstrated clear factorial validity suggesting broad areas of diagnostic disclosure procedure where physicians may make efforts to enhance hope, and that ratings of hopefulness and favorability were related to overall emotional adjustment to the illness. CONCLUSIONS: There was consensus among patients that certain procedures enhanced hopefulness and certain procedures reduced it. Physicians would do well to attend carefully to this aspect of treatment and continually seek patient input concerning their preferences for the conduct of the treatment relationship.

Adaptation, Psychological↗
PubMed2001

Diagnosis disclosure in a Portuguese oncological centre.

The disclosure of a diagnosis of cancer to patients is a controversial matter. There have been major differences in practice concerning this issue through time and between cultures. A questionnaire was sent to the doctors of the Oporto Centre of the Portuguese Institute of Oncology in order to assess their attitudes. We received 45 responses (40%) from the 113 questionnaires sent. Of these, 32 (71%) said that they disclose the diagnosis as a general policy or at the patients' request, and 13 (29%) disclose it rarely or not at all. The most frequent reason indicated by these 13 physicians was that the disclosure might damage the patients psychologically. Forty-four (98%) doctors inform the family of the diagnosis. Thirty-nine (87%) think that patients are satisfied with the information provided. This study was carried out in one oncological centre only, so it is inappropriate to conclude that this is what happens throughout Portugal. As far as we know, this is the first study in Portugal addressing this area of practice. This subject is a very important topic of research both in Portugal and in other countries, as many published recommendations are not research based.

Attitude of Health Personnel↗
PubMed2001

[Prognosis disclosure].

Doctors usually prefer telling the patients diagnosis and therapy than prognosis. Prognostication in fact means foretelling the future, while clinical interventions are scientifical clinical facts. Doctors are accustomed to speak about future only in probabilistic, statistical ways, while the patients ask about their own specific future; so the communication often can become very hard. The prognosis has to do with patient's quality of life, not only with natural history of disease; therefore it is important to establish with the patient a partnership: prognosis must be in fact a common building. A correct prognosis is necessary in informed consent: the outcome of medical intervention must be presented to patients in terms of effects on future quality of life. Prognosis is a very important relational tool: so communication and counselling skills are necessary in medical profession.

Humans↗
PubMed1998

Financial disclosure by clinical investigators--FDA. Final rule; action on petition for reconsideration.

The Food and Drug Administration (FDA) is revising the requirements regarding financial disclosure by clinical investigators in order to add material to the codified language that was inadvertently omitted and to clarify the compliance dates to, in some cases, restrict the retroactive application of certain requirements of the rule. FDA is making these changes in order to respond to concerns raised by the Pharmaceutical Research Manufacturers Association (hereinafter referred to as "PhRMA"). By making these changes, FDA will be reducing the administrative burden for manufacturers and other affected parties while, at the same time, ensuring that the agency obtains the information that is most relevant to its review of clinical data submitted in marketing applications.

Clinical Trials as Topic↗
PubMed2001

[The secrecy aspect of donor insemination].

A literature review among couples treated with donor insemination (DI) showed that almost all participants had planned not to inform the child that this treatment had taken place. Many of the couples had told other people about the treatment, and thus opened up the possibility of a traumatic disclosure. Though secrecy about DI treatment could be taxing for the couple, this strain did not negatively influence the assessment of the relationship, parenthood, or the parent-child relation. Psychosocial development of DI-children was not different from other children's development. It was not possible to show a deleterious effect of keeping the treatment a secret. There is a lack of qualitative studies about the consequences of secrecy for the relationship between DI-parents, for parenthood and for the child. Only one study included adult DI-children.

Adaptation, Psychological↗
PubMed2003

Sexual offender containment: use of the postconviction polygraph.

Victims of sexual assault are unlikely to report the crime. For many sexual offenders, then, their sexually deviant behavior remains largely unknown except for crimes that result in arrest or notification to social services. Little is known about the offender's past behavior and little will be known about the offender's future abusive behavior. It is within this context that the containment approach for managing sexual offenders becomes critical to protecting future victimization by known offenders. This paper describes the need to incorporate information learned from the postconviction polygraph examination into intense treatment and criminal justice supervision. Age of onset and frequency and variety of deviant behavior are known risk factors, probably because they reflect the extent to which deviancy is part of the offender's lifestyle. Treatment and supervision plans must incorporate this information, along with the risk presented by these offenders to very specific age and gender groups. This study of data collected on disclosures made by 180 convicted sexual offenders (most were convicted of crimes against children) during the course of four different treatment/polygraph programs found that 39% had a history of sexually assaulting adults, 31% had sexually assaulted both male and female victims, 36% had engaged in bestiality, and two-thirds of the incest offenders had assaulted victims outside the family. Complete information is necessary for treatment providers and supervising officers to develop meaningful and relevant treatment and supervision plans, and for imminent, situational risk factors to be managed and contained.

Adult↗
PubMedDate not supplied

Counterpoint: public disclosure of process and outcome measures.

Bad data is a toxic substance. In the release of process and outcome measures in the field of health care, numerous examples exist of published bad data. In 1986, the Healthcare Financing Administration released 14 volumes of data concerning Medicare mortality rates which, on analysis, were misleading and unrelated to quality of care. Good data on outcome measures need to follow accepted, rational, and scientific procedures. Such procedures include appropriate definitions of the process or outcome to be measured and careful description of the population being observed, risk adjusted for severity of illness. When this is done, the data can be published with some confidence that it will have value.

Benchmarking↗