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PubMed1999

Historical disclosure of rape by women attending genitourinary medicine clinics.

In a previous internal audit of women attending the department of genitourinary medicine following rape, we noted that data from diagnostic coding seemed to underestimate the problem and that anecdotally, a number of women had been seen with concerns relating to historical assault. We therefore decided to record attendance following rape prospectively. Between 1 June 1996 and 31 May 1997 staff at the Department of Genitourinary Medicine (GUM) at the Royal Infirmary of Edinburgh completed a data collection form for every female patient aged >15 years who attended the clinic and spontaneously disclosed a history of rape, either recent or historical. Seventy-five women attending GUM disclosed a history of rape. Sixty-six per cent were aged <25 years. Thirty women presented more than 12 months after the incidence, of whom 50% presented to the health adviser requesting HIV antibody testing. The incidence of sexually transmitted infections was low and in no case could be specifically attributed to the rape. None of the 38 HIV antibody tests performed were positive. A number of women present to GUM a long time after an incident of rape, most commonly due to concerns about HIV. They may have endured a great deal of mental anguish before summoning up the courage to seek help. This can have a substantial effect on workload, especially for health advisers.

Adolescent↗
PubMed2002

Should disclosure of the danger of awareness during general anesthesia be a part of preanesthesia consent?

Awareness during anesthesia (AGA) is known as an intraoperative incident which could lead to a series of untoward effects, among them symptoms compatible with the posttraumatic stress syndrome (PTSS). Incidence of AGA ranges between 0.1% and 0.7%, most of the reports indicating a 0.2% rate of all general anesthesias. Nevertheless, some patients are considered to be in a higher than usual risk for developing this incident. The list of AGA high-risk situations include caesarian section, open heart surgical procedures, marked obesity, major trauma with hemodynamic instability and chronic use of drugs, alcohol or tobacco smoking. The usual preanesthetic informed consent does not mention AGA among the possible undesired effects of general anesthesia, neither in Israel nor in other parts of the world. This paper rises the question of the indication to discuss the AGA matter, as part of the informed consent, with any patient who is prone develop it in a significant higher percentage than the general population. The topic can be discussed by the primary care physician or by the surgeon, but this represents the obvious task of the anesthesiologist during his/her first contact with the patient before anesthesia and surgery. It is the authors belief that a preoperative discussion on AGA might substantially reduce the magnitude of repercussions of AGA among high-risk patients to develop this anesthetic complication.

Anesthesia, General↗
PubMed1986

Medical confidentiality: an intransigent and absolute obligation.

Clinicians' work depends on sincere and complete disclosures from their patients; they honour this candidness by confidentially safeguarding the information received. Breaching confidentiality causes harms that are not commensurable with the possible benefits gained. Limitations or exceptions put on confidentiality would destroy it, for the confider would become suspicious and un-co-operative, the confidant would become untrustworthy and the whole climate of the clinical encounter would suffer irreversible erosion. Excusing breaches of confidence on grounds of superior moral values introduces arbitrariness and ethical unreliability into the medical context. Physicians who breach the agreement of confidentiality are being unfair, thus opening the way for, and becoming vulnerable to, the morally obtuse conduct of others. Confidentiality should not be seen as the cosy but dispensable atmosphere of clinical settings; rather, it constitutes a guarantee of fairness in medical actions. Possible perils that might accrue to society are no greater than those accepted when granting inviolable custody of information to priests, lawyers and bankers. To jeopardize the integrity of confidential medical relationships is too high a price to pay for the hypothetical benefits this might bring to the prevailing social order.

Confidentiality↗
PubMed2004

Development of a questionnaire to evaluate the information needs of cancer patients: the EORTC questionnaire.

Information disclosure is one of the key areas of support that patients may receive. The European Organisation for Research and Treatment of Cancer (EORTC) Quality of Life Group has a group working on the development of a questionnaire that evaluates information received by cancer patients at different stages of their disease--EORTC QLQ-INFO30. This instrument is being developed by professionals from most European regions. The questionnaire aims to evaluate the information received by cancer patients on different areas of the disease, diagnosis, treatment and care. Besides, the instrument also assesses qualitative aspects of the information they have received. The present paper presents the first two phases of the module development process that include literature review, interviews with patients and professionals, and formulation of the items. All these steps have been carried out in different countries and have been approved by the EORTC QLG.

Adaptation, Psychological↗
PubMed2004

Meeting between experts: evaluation of the first UK forum for lay and professional experts in intersex.

At present the clinical management of intersex is in turmoil. The policy of non-disclosure of diagnosis is widespread and cosmetic genital surgery is routinely performed on infants throughout the world. Some clinicians feel such practices are in the interest of the intersex child and the family, but some intersex adults are calling for a moratorium on sex assignment genital surgery. These widely opposing views have led to distrust between groups. One way to begin to address these critical issues is to facilitate dialogue with equal input from clinicians and intersex people and families. Clinicians are experts by training, but patients and families are experts through lived experiences. Our paper reports the rationale, process and outcome of the first UK forum bringing together these different experts to address some of the most complex issues in clinical services. In communicating our experiences, we hope that it will provide a useful reference point for those seeking similar service-user/provider collaboration in other areas of medicine.

Attitude of Health Personnel↗
PubMed2006

Do older adults presenting with memory complaints wish to be told if later diagnosed with Alzheimer's disease?

BACKGROUND: Many patients with Alzheimer's disease are not told their diagnosis. Studies have shown that relatives possess mixed views regarding whether or not patients should be told while elderly peers favour disclosure. Recent studies have shown that patients with diagnosed dementia also favour being told. The present study sought the views of patients prior to diagnosis. METHOD: Participants were a consecutive sample of patients aged 65 and over suffering from memory complaints. They were asked what they considered to be causing their memory problems and whether or not they would want to know the cause. They were then specifically asked if they would want to know if diagnosed with Alzheimer's disease and what were their reasons for this. RESULTS: Two-thirds of patients were uncertain regarding the cause of their memory difficulties although the remainder did offer some valid explanations. Eighty-six per cent wanted to know the cause while 69% wanted to know if diagnosed with Alzheimer's disease and a variety of reasons were offered to support their preference. CONCLUSION: The majority of older adults presenting to services with memory complaints had little understanding of the potential cause of their problems. Most were nevertheless keen to know the cause, even if this transpired to be Alzheimer's disease. The clinical implications of the findings are discussed and suggestions made for future research.

Aged↗
PubMed2005

[Participation in the national experiment of cancer diagnosis disclosure in neuro-oncology: implications and the perception of the health care team].

Announcement of cancer diagnosis and first contact with medical team in charge of treatment is critical for the patient as well as for the quality of care. The French Cancer Plan include a special focus on these announcement which should be performed in adequate conditions and which should include the presentation of a personalised treatment plan, that reflect multidisciplinary discussion and decision performed before. In order to generalized a formal announcement consultation all over the country in 2005, an experimentation has been performed in 58 centers grouped in 37 projects. Neuro-Oncology Unit of the Assistance Publique-Hopitaux de Marseille did participate to that experimentation. Evaluation of these experiment focus on physician, nurse, and patient perception as well as cost impact and exploration of language during that particular time. Implication of a referent nurse in that time was a strong option of our center. We analyzed the result in 80 patients referred in our center for initial diagnosis (78%) or announcement of recurrence (14%) in a 5 months time. Implication of the nurse appear to be critical for patient confidence and accessibility to information for the all medical team. Organization of a particular time devoted to cancer announcement appear to have a favourable impact on quality of care and patient perception, and constitute a first step to a personalized management of patients with cancer.

Brain Neoplasms↗
PubMed2003

Delivering the diagnosis of MS--results of a survey among patients and neurologists.

OBJECTIVES: The need for an early disclosure of the diagnosis of multiple sclerosis (MS) has become more pressing with the publication of two recent randomized trials which have indicated that very early treatment may favourably alter the disease course. We assessed the current status of diagnostic and therapeutic information on MS from the point of view of patients and neurologists. METHODS: A standardized questionnaire was sent out through the patients' self-help organization in Hamburg, Germany and to all neurologists. RESULTS: A total of 434 of 1300 patients and 80 of 250 neurologists replied. Neurologists gave 90% of the diagnoses but only 50% of patients reported them as the major aid helping to understand the disease. Fifty per cent of patients were not informed about any form of therapy at the time of diagnosis regardless of whether their MS diagnosis was disclosed within the last 5 years or earlier. In contrast to physicians, patients voted for information about a possible MS even if the diagnosis may not yet be clear. CONCLUSION: From the patients' perspective, information about the diagnosis of MS should be more straightforward, and more information about therapies should be provided.

Adolescent↗
PubMed2000

Home-based treatment for children and families affected by HIV and AIDS. Dealing with stigma, secrecy, disclosure, and loss.

The compelling needs of HIV-affected children and families sometimes appear to represent human struggles under the magnifying glass. The multiple assaults on the healthy psychologic development of children through disruptions in caregiving, loss, and abandonment require interventions that are mindful of their mental health needs and longer-term developmental trajectories. An ongoing relationship with a clinical team who can understand and respond to the vicissitudes of the illness and provide calibrated psychotherapeutic and case management services can aid both children and parents in the painful tasks that AIDS presents. Whereas clinically informed case management services can offer respectful and thoughtful concrete help, psychotherapy can offer the opportunity for children to pull together the often fragmented narratives of their family lives and integrate object loss to be free to continue on a normative developmental path. Comprehensive, wraparound home-based services of the type described in this article represent a mostly new tradition in psychiatry, but one that ensures that mental health services are provided to the most vulnerable children and families. For those affected by HIV or AIDS, home-based services can be the key to healthcare and treatment compliance. In addition, when services are well integrated within a community context, such that regular communication with other healthcare providers (AIDS clinics, visiting nurse services, and AIDS care agencies) is ongoing, what is provided constitutes continuity of care in the truest sense.

Acquired Immunodeficiency Syndrome↗
PubMedDate not supplied

Diagnosis, disclosure, and informed consent: learning from parents of children with cancer.

PURPOSE: The aim of this study was to learn about and to describe retrospective perceptions of parents of the circumstances of their child's cancer diagnosis and of the informed consent process. METHODS: Professional moderators conducted three focus groups with 22 parents of children with cancer who were eligible for enrollment in a Children's Cancer Group clinical trial research protocol. Each focus group consisted of seven to nine parents and was audiotaped and transcribed. RESULTS: Parents' descriptions of the early phase of their child's illness yielded the following themes: dialogues regarding the diagnosis and treatment options occurred amidst tremendous stress; a sense of constraint and lack of control were common; parents experienced variable degrees of choice regarding their child's participation in a clinical trial; and parents provided suggestions about how to improve the informed consent process. Overall, parents did not verbalize distinctions between their understanding of their child's medical treatment, research participation, and other aspects of their child's cancer experience. CONCLUSIONS: Based on these results, the authors conclude with practical recommendations for health care professionals caring for children with cancer and call for future research about parents' understanding of treatment options, the nature of clinical trials, and experience with the diagnostic and early treatment phase of childhood cancer with larger samples of parents from multiple sites.

Adolescent↗
PubMed2003

Disclosure of a cancer diagnosis in Thai patients treated with radiotherapy.

Although radiotherapy usually implies a cancer diagnosis, no available study has been reported as to what proportion of Thai patients treated with radiotherapy know their diagnosis and how they want related information revealed. We questioned 106 patients in order to determine the proportion who knew their cancer diagnosis, and interviewed patients who knew the diagnosis and relatives of patients both who knew and did not know it with semi-structured questionnaires concerning how they wanted to be told. Sixty-seven patients (63.2%) knew their cancer diagnosis. Multivariate analysis showed that the patients with the following characteristics were inclined to know their diagnosis: younger than 70 years old, head and neck or gynecological cancer, no previous treatment before radiotherapy, no accompanying relatives during the treatment, and patients with relatives who wanted to disclose the information. 97.0% of patients who knew the diagnosis indicated that they had really wanted to know, 89.5% and 73.3%, respectively of relatives who accompanied patients who knew and did not know it expressed the same wish. No demographic factors could predict who wanted to be told the diagnosis. The majority of patients and relatives who wanted the diagnosis disclosed wanted to know all related information before treatment. They wanted to hear this directly from the doctor in the presence of their relatives.

Adaptation, Psychological↗
PubMed1996

Secondary traumatization in parents following the disclosure of extrafamilial child sexual abuse: initial effects.

Disclosure or discovery of extrafamilial sexual abuse (ESA) has the potential to traumatize the entire family system. Little controlled research has examined the initial reactions of parents to this type of trauma. The present study evaluated the adjustment of 93 parents (63 mothers and 30 fathers) within 3 months of the disclosure of ESA. Parents' functioning was compared to that of a nonclinical comparison group of 136 parents (74 mothers, 62 fathers). Parent adjustment was assessed using self-report measures of psychological distress, parent competence, family functioning, marital functioning, life stressors, and environmental support. Results revealed that mothers of sexually abused children, in comparison to mothers of nonabused children, experienced greater overall emotional distress, poorer family functioning, and lower satisfaction in their parenting role. Fathers of sexually abused children also experienced greater overall emotional distress relative to comparison fathers but their level of distress remained below that of mothers. Standard and hierarchical multiple regressions on maternal self-reports revealed that mothers' satisfaction with their parenting role and their perceived level of environmental support predicted their emotional functioning. Abuse-related variables did not contribute to the prediction of emotional functioning. These results emphasize the need to expand our focus beyond the child victims to the traumatized families and to normalize the potential for all close family members to be vulnerable to experience adjustment difficulties following ESA.

Adaptation, Psychological↗
PubMed2005

Children of the closet: a measurement of the anxiety and self-esteem of children raised by a non-disclosed homosexual or bisexual parent.

This research examined whether a parent's non-disclosure of his or her homosexual or bisexual orientation within the family unit negatively affects self-esteem and anxiety in children, as measured in adulthood. Thirty-six subjects indicated that they had not known of their parent's sexual orientation until an average age of sixteen for the children of lesbian or bisexual mothers, and twenty-two for the children of gay or bisexual fathers. This group's scores on the Rosenberg Self-Esteem Scale, the Marlowe Crowne Social Desirabilty Scale and the State-Trait Anxiety Scale were compared to scores obtained by sixty-three participants who did not have a homosexual/bisexual parent. The number of years a secretive environment surrounded the child was measured, as were participants' attitudes about the secret sexual identity. Although the study did not find that adults previously raised with a closeted parent had significantly higher levels of anxiety or lower levels of self-esteem, results indicated that those who had been raised as children with non-disclosed lesbian mothers showed a significantly higher level of self-esteem than participants with heterosexual parents. Implications of the findings for the targeted population are discussed.

Adolescent↗
PubMed1991

Disclosure of breast cancer diagnosis: patient and physician reports. GIVIO (Interdisciplinary Group for Cancer Care Evaluation, Italy)

Although there is considerable controversy about what information regarding the diagnosis of cancer is most helpful to patients in meeting their psychological and medical needs, little research exists on what patients who are treated in non-specialized institutions are told about their diagnosis and treatment. We assessed the information that breast cancer patients received about their diagnosis from the perspective of both the patient and the physician, in order to determine whether they agree in their perceptions of communication, and whether the nature of patient-physician communication is associated with patient satisfaction. Questionnaires were completed by 1171 Italian breast cancer patients (representing a 81.5% response rate) and their physicians at the time of surgery for breast cancer. Only a minority of patients (47%) reported having been told that they had cancer. Satisfaction with information was highest among women who had been told the diagnosis. Patient and physician reports of what information was conveyed about the diagnosis differed for over half of patients, with highest satisfaction levels reported when both patient and physician stated that the diagnosis had been conveyed. While comparison of patient and physician reports should not be used to validate either source of information, the degree of patient-physician disagreement found in this research may alert physicians to potential difficulties that can arise in communicating with cancer patients.

Aged↗
PubMed2005

Changing help-seeking rates for intimate partner violence in Canada.

The adverse physical and psychological sequelae of intimate partner violence (IPV) are well documented, as are government initiatives in Canada since the early 1990s to address the problem through public awareness campaigns and service enhancement programs. While these initiatives have been designed to encourage abused women to come forward, there has been little research examining changes over time in help-seeking rates among this group. To fill this void, we compared data from two large Canadian population-based, cross-sectional telephone surveys: the 1993 Violence Against Women Survey (1993-VAWS) and the 1999 General Social Survey (1999-GSS). Among women who reported physical and/or sexual violence by a current or previous partner, we examined differences in rates of disclosure of abuse, help-seeking by type of service, and barriers to service use. Abused women in the 1999-GSS were significantly more likely than those in the 1993-VAWS to have reported disclosing a violent incident(s) to a family member (66.4% v. 43.9%), friend or neighbor (67.4% v. 45.4%), doctor or nurse (31.9% v. 23.0%), and/or minister, priest, or cleric (11.5% v. 7.3%). The 1999-GSS cohort was also more likely to have presented to a shelter or transition house (11.0% v. 7.8%), a crisis center (17.3% v. 4.2%), a counselor or psychologist (39.1% v. 14.7%), a women's center (11.2% v. 3.4%), and/or a community or family center (15.4% v. 4.7%). Among those women who did not seek help, fewer in the 1999-GSS reported that they did not know of any services (6.4% v. 17.0%), or that services were not available (0.8% v. 14.5%). Although we found a demonstrable increase in the numbers of abused women seeking help, overall, rates of service utilization were still low as late as 1999, highlighting the importance of continued government commitment to funding IPV initiatives.

Adult↗
PubMed2000

Disclosure of Huntington's disease to family members: the dilemma of known but unknowing parties.

Predictive genetic testing presents unique issues in the legal and ethical debate concerning disclosure of information within the physician-patient relationship. A duty to disclose information to family members has been found when the disclosure is likely to result in the ability to mitigate the damaging effects of the disease. When evaluating the situation where a individual is at risk of Huntington's disease, the analysis must be different, as shown in this paper, and necessitates an ethical and legal examination of the consequences of receipt of the information on family members, those known but unknowing parties who are at risk of inheriting a genetic disease. This paper analyzes the potential legal duty of a physician to disclose or withhold genetic information from the family members of patients. Existing statutes governing genetic information do not directly address the interests of family members. Courts that have ruled on the duty to disclose medical or genetic information have analyzed these issues using traditional concepts of tort law. Yet the situation presented by Huntington's disease is unique and demands a different framework for analysis, given the late onset and lack of curative or ameliorative treatment. This paper also analyzes the ethical standards to be invoked when considering violating the privacy of a patient or a family member. The principles of autonomy and self-determination of family members are considered, versus the risk of harm and the privacy interest in not knowing potentially devastating information.

Confidentiality↗
PubMed1997

Women with HIV disease attending a London clinic.

OBJECTIVE: To examine ethnic, relationship, health, and mental health factors for a cohort of women with HIV infection attending an inner London clinic. DESIGN AND METHODS: Structured schedules were utilised to analyse ethnic group, family, and reproduction issues, mental and physical health for 100 women drawn consecutively from attenders at an inner London HIV clinic RESULTS: 51% of the women were non-ethnic minority groups and 49% were from ethnic groups. HIV testing was often as a result of symptoms or partner illness. One in five had disclosed their status to one person only or no one. Ethnic minority women were more likely to restrict disclosure. Forty seven per cent of the women had 100 children with more children reported in ethnic minority families; 28% of the children had been tested for HIV and five were confirmed HIV positive; 9% of children were born after HIV diagnosis. Nineteen women reported one or more termination of pregnancy, the majority before HIV diagnosis. Three quarters had a partner of whom 56 knew the partner's status. Women with HIV positive partners were more likely to have children. Women kept in ignorance of partner status were more likely to be ethnic minority women. Thirty two per cent had an AIDS diagnosis, diagnosed mostly in the UK. Medical and counselling service uptake was high. Gynaecological problems were common (49% had one or more problem) and 34% had at least one hospital admission. A wide range of counselling issues were recorded, with variations over time. Suicidal issues were relevant for 13% of women (69% ideation, 31% attempts). Significant life events were noted for many women with allied coping demands. CONCLUSIONS: There are a wide range of issues for women with HIV and systematic differences between ethnic and non-ethnic women and those with or without children.

AIDS Serodiagnosis↗
PubMed2006

Cancer patients' preferences for communication of unfavourable news: an Asian perspective.

It is important to understand cancer patients' preferences for communication as it impacts on how unfavourable news should be delivered in such a way as not to demoralize the patients while at the same time maintain good doctor-patient relationships. However, few studies have been undertaken in the Asian countries. This study aims to determine the preferences of cancer patients regarding the disclosure of unfavourable news in an Asian population in Singapore. Two hundred cancer patients at the National Cancer Centre, Singapore, completed a Measure of Patients' Preferences (MPP) questionnaire on how they would like their physicians to tell them unfavourable news about their condition. The patients rated the content and context of the communication as well as the physicians' characteristics on a five-point Likert scale. Items that scored the highest mostly related to physicians' expertise and content of the interaction, while those relating to the supportive aspects scored the lowest. Gender was significantly associated with scores on the support subscale of the MPP such that women reported that the supportive elements were more important than the men did. No other demographic and medical characteristics were associated with patients' preferences. Exploratory factor analysis yielded two main factors, which accounted for 79.38% of the common variance. Patients' preferences in our local Asian population are fairly similar to those obtained from other studies conducted in the West, despite possible socio-cultural differences such as the use of euphemisms.

Adult↗