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PubMedDate not supplied

The dilemmas of parents of adolescents and young adults with congenital heart disease.

OBJECTIVE: To provide a better understanding of parents' experiences as their children with congenital heart disease mature through adolescence and young adulthood. DESIGN: A qualitative pilot study. SETTING: The physician practices of the pediatric cardiology service of a large university medical center. SUBJECTS: Eight parents of adolescents and young adults with congenital heart disease. INTERVENTION: Each parent was separately interviewed with use of a semistructured interview guide. RESULTS: Our study has identified seven themes--the dilemmas of normality, disclosure dilemmas, the challenge of uncertainty, illness management dilemmas and strategies, social integration versus social isolation, the impact of illness on the family, and coping--with which parents have struggled through-out their adolescent's and young adult's life. It was not possible to determine whether the experiences described by these parents are unique. CONCLUSIONS: Parents experience distress, as outlined in the seven themes. They need assistance to determine what is "normal" for their child and how to monitor their child's health and safety. Further research is needed to develop specific interventions.

Adaptation, Psychological↗
PubMed1998

Psychotherapy and disclosure: recent court decisions.

OBJECTIVE: To encourage mental health professionals concerned about the practice of psychotherapy to add their voices to the legal debate on disclosure. METHOD: Analysis of recent court decisions, in particular 2 Supreme Court of Canada judgements, R. v. O'Connor and R. v. Carosella, and 1 United States Supreme Court judgement, Jaffee v. Redmond. RESULTS: The lack of a common definition of psychotherapy may, in part, have made it awkward for mental health professionals to mount a concerted defence of psychotherapy dossiers. CONCLUSIONS: Unless mental health professionals develop a more robust justification and delimitation for privilege, in Canadian courts possible relevance of clinical material is likely to override concern for the patient's privacy interest. Future research might evaluate the impact of loss of privilege upon different types of psychotherapy.

Attitude of Health Personnel↗
PubMed1997

The ethics of managed care. An initial look at physicians' perspectives.

The need for medical care in the United States had exceeded the financial resources required to pay for that care. To address this problem, managed care health insurance programs have become commonplace. With managed care programs, however, physicians are facing increasing ethical pressures. This article reviews the ethical dilemmas physicians face under a managed care system and conducts a national random sample of general practitioners and surgeons regarding four major ethical dilemmas: under treatment of patients due to overt pressures or financial incentives, breaches of patient confidentiality by the physician that are required by the managed care plan, lack of disclosure to the patient of the financial incentives or overt pressures under which the physician functions, and overuse of practice guidelines. The results of this survey suggest that physicians are more likely to compromise patients' confidentiality and not discuss financial arrangements with patients than they are to compromise actual patient care. Those physicians with more than 30 percent of their patient load coming from managed care are more likely to have faced the scenarios presented by the survey. There is, however, no statistically significant difference in the physicians' responses to these scenarios based on the percentage of the physicians' patient load coming from managed care.

Attitude of Health Personnel↗
PubMed2003

[Conspiracy of silence in oncology: a situation not to be overlooked].

Disclosure of a cancer diagnosis and, more often that of a poor prognosis facilitates the creation of a conspiracy of silence, also called a collusive situation. It is often imposed by the patient's relatives. While the initial purpose is to protect a loved one from bad news, these situations are observed in the end to create psychological suffering for all of the protagonists: patient, family, care providers. In order to resolve conflicts and improve the lived experience of difficult moments, it is preferable to break into the collusion by initiating a dialogue. A clinical vignette illustrates an approach to take in everyday practice.

Attitude of Health Personnel↗
PubMed2000

Mass media and disclosures of child abuse in the perspective of secondary prevention: putting ideas into practice.

OBJECTIVE: From a theoretical and practical point of view, it is worthwhile to utilize the full potential of prevention of child abuse. However, prevention strategies in the field of child abuse were generally limited to prevention by means of interpersonal communications. This paper seeks to address this lacuna. METHOD: A case-study is presented by describing and analyzing the organization and program development of a Dutch mass-media intervention aimed at the enhancement of disclosure of abuse of 8- to 15-year-old children, including physical, sexual, and emotional abuse. RESULTS: In the developmental process, several shortcomings are noticed, with respect to problem analysis, goal setting, and the assessment of unplanned effects. Critical comments are made on the intervention density, and the input and output of financial and human resources. Contrary to most preventive interventions, the described intervention could interrupt between the dependency of the abused child on the perpetrator and communicate with children directly. CONCLUSION: In a field which is in need of more effective prevention strategies, the program described may serve as an example of an ecological approach, which goes beyond the micro system, extending our potential in preventing ongoing abuse.

Adolescent↗
PubMed2003

To a safer place? Victims of sexual abuse by females and their disclosures to professionals.

OBJECTIVE: To explore the experiences of victims of female sex offenders with regard to disclosing sexual abuse to a professional, and importantly, the impact of professional responses on victims. METHOD: The data were derived from one-to-one semi-structured interviews with 14 (7 males, 7 females) victims of child sexual abuse by female perpetrators. Victims ranged in age from 23 to 59 years and were recruited through professional referrals or through poster advertisements in counseling services. Participants responded to questions on their family background, experience(s) of sexual abuse, experience(s) disclosing the sexual abuse to a professional, and the impact of professional responses. RESULTS: The majority of victims reported sexual abuse by their mothers. The average age of onset of the sexual abuse was age 5, lasting, on average, 6 years. Five participants reported experiencing severe, moderate and mild sexual abuse, four reported experiencing both severe and mild sexual abuse and five reported experiencing moderate and mild sexual abuse. The findings underscore the significance of professional intervention in relation to victim disclosures of sexual abuse by females. Professional responses to disclosures, whether positive or negative, appeared to have a crucial impact on the well-being of victims. Supportive professional responses including the acknowledgment and validation of victims' experiences of sexual abuse appeared to mitigate the negative effects of the abuse. In contrast, unsupportive responses where professionals minimized, or disbelieved victims' allegations of sexual abuse appeared to exacerbate the negative effects of the sexual abuse, ultimately inciting secondary victimization. CONCLUSION: The study highlights the need for the development and implementation of professional training initiatives to sensitize professionals to the issue of female sex offending and the intervention needs of victims. Failure to do so could have negative consequences for victims sexually abused by females.

Adult↗
PubMed2006

Failure to achieve assent in a communicative patient: what are the caregiver's obligations?

Disclosure of facts related to an individual's health care, including level and location of care, are central to the fulfillment of informed consent. When an individual is unable to provide informed consent because they lack the decision-making capacity to process the information and/or they have been deemed legally incompetent, the health care team should obtain assent from the individual whenever possible. Questions remain as to how to proceed when assent cannot be gained and the decision involved causes a level of distress for the individual that is difficult to resolve. A focus on maintaining hope and support with a clear transition and follow-up plan are important variables to consider for an ethical, caring response.

Aged↗
PubMed1991

The physician as fortune teller: a commentary on "The ethical justification for minimal paternalism.

...I shall summarize my argument to this point. 1) A new technology -- medicalizing life choices -- introduces additional sources of uncertainty into the physician-patient relationship. The implications for the authority-autonomy tension of that relationship are not fully worked out, as is evidenced by differing views on professional obligations. 2) The warrants for paternalism are complex, ranging from a pragmatic response in the face of uncertainty to a proactive, highly directive determination of the patient's best interests. 3) Although some proponents of autonomy argue that it entails positive rights to intervention and information, the "strong sense" of autonomy is not the prevailing view. 4) The as yet unclear benefits of knowledge about one's genetic makeup are even less clear in the case of HD. Strong circumstantial evidence of risks of harm from disclosure of unfavorable test results have not been dispelled by early experience with use of the HD test. 5) A cautious approach in the use of HD test seems warranted, even at the cost of restricting autonomy. Legitimating that approach by reference to traditional ethical theory is a necessary element in the transfer of the new technology to the wider clinical setting. 6) While PMP [the principle of minimal paternalism] attempts to offer such an approach, some questions do not appear to have been resolved or fully addressed by this formulation.

Altruism↗
PubMed2003

To tell or not to tell: barriers and facilitators in family communication about genetic risk.

Communication about genetic risk in families is an important issue for genetic counsellors. The objective of this study was to explore the barriers and facilitators in family communication about genetic risk. Semi-structured interviews were undertaken with patients in the Northeast of Scotland who had attended genetic counselling for risk of hereditary breast and ovarian cancer and Huntington's disease, and with some spouses/partners. The interviews confirmed that the issue of disclosure was a problem for some, and that there were generic communication issues common to both groups. Telling family members about genetic risk was generally seen as a family responsibility and family structures, dynamics and 'rules' influenced disclosure decisions. A sense of responsibility towards younger generations was also important. The level of certainty felt by a person in relation to his or her own risk estimate also influenced what he or she could tell other family members. Communication within a family about genetic risk is a complex issue and is influenced by both pre-existing familial and cultural factors and individuals' responses to risk information. If genetic counsellors understood how these factors operate in individual families they might be able to identify effective strategies to promote considered decisions and prevent unnecessary emotional distress.

Adult↗
PubMed2005

Fiduciary disclosure of medical mistakes: the duty to promptly notify patients of adverse health care events.

Fiduciary obligations are imposed by the common law to ensure that a person occupying a societal role with a high potential for the manipulation of vulnerable persons exercises utmost good faith. Australian law has recognised that the doctor-patient relationship, while not wholly fiduciary, has fiduciary aspects. Amongst such duties are those prohibiting sexual or financial abuse of patients or disclosure without express authority of confidential information. One important consequence of attaching such fiduciary duties to the doctor-patient relationship is that the onus of proof falls not upon the vulnerable party (the patient), but upon the doctor (to disprove the allegation). Another is that consent cannot be pleaded as an absolute defence. In this article the authors advocate that the law should now accept that the fiduciary obligations of the doctor-patient relationship extend to creating a legal duty that any adverse health care event be promptly reported to the patient involved. The reasons for creating such a presumption, as well as its elements and exceptions, are explained.

Australia↗
PubMed1983

[The mentally handicapped child and his family].

Three points concerning the mentally retarded child's family and the physician's attitude towards this family are addressed. The first concerns disclosure of the handicap to the parents, which can take place only once the diagnosis is established without equivocation. Genetic counseling, or more pragmatically the reproductiveness of the handicap, is the second point. A thorough investigation of possible etiologies is warranted in all cases in order to try to answer the distressing question: "are the children to be born at risk?". An attempt at a classification based on reproductiveness is proposed. The third point is the future. Should the child remain with it's family or be placed in an institution? This decision is the parents and not the physician's. However, the physician should discuss this problem with the parents to enable them to voice their desires and their anxiety.

Family↗
PubMed2005

Public attitudes and opinions toward physicians and dentists infected with bloodborne viruses: results of a national survey.

BACKGROUND: There has been no recent assessment of public attitudes and opinions concerning risk of bloodborne virus transmission during health care. METHODS: Seven items in the 2000 annual Healthstyles survey were used to assess current attitudes and opinions about health care providers infected with human immunodeficiency virus (HIV) and the risk of bloodborne virus transmission during health care in a sample of approximately 3000 US households. RESULTS: Of the 2353 respondents, 89% agreed that they want to know whether their doctor or dentist is infected with HIV; 82% agreed that disclosure of HBV or HCV infection in a provider should be mandatory. However, 47% did not believe that HIV-infected doctors were more likely to infect patients than doctors infected with HBV or HCV. Opinions were divided on whether HIV-infected providers should be able to care for patients as long as they use good infection control: only 38% thought that infected providers should be allowed to provide patient care. CONCLUSIONS: These findings suggest that improved public education and risk communication on health care-associated bloodborne infections is needed.

Adolescent↗
PubMed2006

Social relationships, stigma and adherence to antiretroviral therapy for HIV/AIDS.

Research on adherence to combination antiretroviral therapy has up to now focused largely upon problems of definition and measurement, and on the identification of barriers and supports. This paper examines the intersection between taking HAART and building a life with HIV/AIDS. Data consist of 214 qualitative interviews with 52 HIV-positive, active illegal drug users. A interpretive analysis drawing upon stigma and fear of disclosure as analytical constructs was applied to explain working tensions between efforts to develop social relationships on the one hand, and attempts to safeguard health through adherence on the other. The analysis specifies a mechanism through which stigma as a social process results in marginalization and exclusion. The hierarchical organization of multiple stigma is also noted. Loneliness and the desire for relatedness is intensified by drug use. Results suggest that persons with HIV/AIDS will not consistently subordinate other interests to prioritize adherence. Interventions aimed at supporting long-term adherence must address experienced conflicts between 'health' and 'life'.

Activities of Daily Living↗
PubMed2002

Diagnosis disclosure in cancer patients--when the family says "no!".

It is not uncommon for family members to thwart a doctor's attempt at disclosure of cancer diagnosis to the patient. This stems from concern and love as well as fear of the negative psychological impact of such revelation. Indeed, collusion of this nature was the norm in medical practice till the not too distant past. In this era of patient autonomy and the right to information, we must be careful not to allow attitudes of medical staff or patients' families, language difficulties and organisational issues become barriers to patient's access to information and their psychological coping of the illness. At the same time, we also need to be acutely aware of the unique cultural environment we work in and the families' emotional needs even as we aim to match the patient's desire for information.

Family↗
PubMed1995

Parental distress and ability to cope following disclosure of extra-familial sexual abuse.

This study is concerned with the problems experienced by parents following disclosure of extra-familial sexual abuse where the perpetrator was known or related to the child or family. Thirty parents (including stepparents), took part and most completed a series of questionnaires, as well as participating in a semistructured interview. Data obtained related to depression, posttraumatic stress, marital satisfaction, and attitude to child victim. Other data relating to anger and loss of significant relationships was obtained from the semistructured interview. Parental distress and ability to cope is described in terms of three distinct types: Type I--Parents able to cope following initial period of distress; Type II--Parents able to cope following initial period of distress, but with significant problems; Type III--Parents unable to cope following initial period of distress.

Adaptation, Psychological↗
PubMed1998

Impact of HIV on families of HIV-infected women who have recently given birth, Bangkok, Thailand.

The objective of this study was to assess changes in the family situation of HIV-infected women who have recently given birth. As part of a prospective perinatal HIV transmission study, interviews were conducted with a subset of HIV-infected women at 18 to 24 months postpartum, and answers were compared with baseline information obtained during pregnancy. Standardized scales were used to assess levels of psychosocial functioning. A convenience sample of 129 HIV-infected women enrolled during pregnancy was interviewed at 18 to 24 months postpartum. At delivery, the women were young (median age, 22 years), primiparous (57%), and asymptomatic (93%). When baseline and follow-up data were compared, more women were living alone (1% versus 6%; p = 0.03), fewer women were living with their partners (98% versus 73%; p < 0.001), and 30% of families had reduced incomes. At follow-up, 10% of partners had died, and more partners than wives had become ill or died (21% versus 4%; p = 0.02). Most children (78%) were living with their mothers, but only 57% of the HIV-infected women were the primary caretakers. Fewer women had disclosed their HIV status to others (e.g., family, friends) than to their partners (34% versus 84%; p < 0.001), largely because of fear of disclosure. The women appeared to have high levels of depression and worry. The women's greatest worries were about their children's health and the family's future. Within 2 years after childbirth, substantial change within the families of HIV-infected women was evident. These were manifest by partner illness or death, family separation, reduced family income, shifting responsibilities for child care, and signs of depression and isolation. Providing family support is a major challenge in Thailand as the perinatal HIV epidemic progresses.

Adult↗
PubMed2000

An historical analysis of disclosure of terminal status.

PURPOSE: To examine the concept of disclosure of terminal status and trace its development and implementation over time. An individual's ability to make appropriate end-of-life decisions, exert some control over the place and manner of death, and prepare self and significant others for this loss depends on knowing that life is drawing to a close. ORGANIZING FRAMEWORK: An analysis of disclosure of terminal status was performed within the context of American social, political, and cultural history from 1930 to 1990. METHODS: A combination of manual and computerized search mechanisms was performed utilizing popular, nursing, medical, sociological, psychological, and thanatological literature from 1930 to 1990. The articles and books obtained through these searches were scanned and those articles and books that dealt with health care disclosure issues were selected. Works included in the review were 149 articles and 22 books. FINDINGS: A long-standing tradition of nondisclosure exists in the medical profession. Societal events in the 1950s and 1960s influenced individuals' perceptions of death, individual rights, and physician responsibility, and culminated in some change in this tradition in the 1970s. The magnitude of this change is unknown. Current practice has not been investigated. This topic is rarely addressed in nursing literature even though nursing care is influenced by physicians' practice. CONCLUSIONS: A tradition of nondisclosure prohibits patients from managing the end of their lives and making choices about their manner of death. Nursing care of terminally ill patients is compromised when patients are uninformed.

Attitude to Death↗
PubMedDate not supplied

Nephrologists should voluntarily divulge survival data to potential dialysis patients: a questionnaire study.

BACKGROUND: For many dialysis patients, survival is no different than with certain cancers. Yet, it appears that most nephrologists do not give detailed information about survival prior to obtaining informed consent for chronic dialysis. There are no published data on whether patients wish to be so informed. OBJECTIVE: To assess whether patients would want voluntary disclosure by their physician of their survival should they need dialysis, and if so, why? METHOD: A questionnaire was completed by 100 general nephrology patients during their first visit to a nephrologist. RESULTS: The vast majority of patients (97%) would want to be given life-expectancy information, and for the physician to do so without having to be prompted. Furthermore, the majority of patients would want as much information as possible, both good and bad. CONCLUSIONS: Virtually all patients want, and therefore should receive from their physician, prognostic information about dialysis to facilitate informed decision-making. This is in accordance with current practice guidelines.

Aged↗