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PubMed1984

Attitudes of physicians, pharmacists, and laypersons toward seriousness and need for disclosure of prescription drug side effects.

How much information should be provided to patients about prescription drug side effects? What determines the perceived seriousness of a drug side effect and how does seriousness relate to the need to inform patients about that effect? This study explored these questions in a survey of laypersons, physicians, and pharmacists. The results indicated that pain, effect on one's ability to carry out everyday activities, and threat to life were the key determinants of a side-effect's seriousness. Laypeople tended to judge most side effects as more serious than did pharmacists and physicians. Whereas the health professionals tended to want minor side effects listed only if they occur quite frequently, laypeople tended to want all potential effects listed, no matter how rarely they occur or how minor they are. The practical and political implications of these findings are discussed.

Adult↗
PubMed2006

Postpartum mothers' disclosure of abuse, role, and conflict.

Experts evaluating evidence of the occurrence and effects of abuse before, during, and after pregnancy have called for research on the context within which violence occurs. This study elicited postpartum mothers' perceptions of roles and conflict in their abusive intimate relationships. Thirty newly delivered African-, Anglo-, and Hispanic-American abused mothers consented to be interviewed. While ethnicity, cultural norms, and economic issues framed their descriptions, more than half (57%) described their relationships as not abusive even though they reported experiencing behaviors defined as abuse on standardized abuse screening instruments. Several women found ways to take care of themselves within the abusive relationship. The concerns that these diverse abused postpartum mothers expressed can serve as a foundation for the development of culturally sensitive interventions.

Adult↗
PubMed2004

From human ability to ethical principle: an intercultural perspective on autonomy.

Based on an empirical study regarding ethical challenges within intercultural health care, the focus of this article is upon autonomy and disclosure, discussed in light of philosophy and anthropology. What are the consequences for patients if the patients' right to be autonomous and to participate in treatment and care decisions by health care workers is interpreted as an obligation to participate? To force a person to make independent choices who is socio-culturally unprepared to do so, may violate his/her integrity. This may in turn jeopardise the respect, integrity and human worth the principle of autonomy was meant to ensure, and if so, may damage any relationship of trust that may exist between patient and health care worker. There is necessarily a link between autonomy and disclosure. Western disclosure practices may make the relationship between patients and health care workers difficult--even distrustful. To confront a patient with a very serious diagnosis may be seen not only as a tactless action, but also an unforgivable one. Hence, among many ethnic groups it is a family member's duty to shield patients from bad or disquieting news, e.g., a cancer diagnosis. If a family member is used to interpret in such situations, will the information given equal the information communicated by that interpreter? Even though respect for a person's autonomy is part of the respect for a person, one's respect for the person in question should not depend on his/her ability or aptitude to act autonomously.

Choice Behavior↗
PubMed2003

Parents' stories of sensitive and insensitive care by paediatricians in the time leading up to and including diagnostic disclosure of a life-limiting condition in their child.

UNLABELLED: This study explored parents' experiences of care by paediatricians in the time leading up to and including diagnostic disclosure of a life-limiting condition in their child. RESEARCH METHODS: Qualitative exploration using in depth interviews with a purposive sample of 30 families whose child was diagnosed with a life-limiting condition. RESULTS: Parents' stories centred upon their need to have their concerns and needs as parents validated by paediatricians. Demonstrable qualitative differences were shown to exist between the sensitive and insensitive clinical practices of paediatricians. Parents' stories identify the need for clinical practice to be based upon a humanistic approach to care. These also identify how sensitive paediatricians achieved this ideal through meeting the 'double obligation' of combining technical skills with an understanding of their needs as parents.

Adolescent↗
PubMed2002

Communicating in a multicultural society. II: Greek community attitudes towards cancer in Australia.

BACKGROUND: Open and full disclosure of information regarding diagnosis and prognosis is the prevailing approach to cancer patients. However, such a view appears contrary to the preferences of many ethnic groups in Australia. AIMS: This study sought to examine the range of attitudes to cancer, its treatment and disclosure of information among unaffected Greek adults, as part of an ongoing project to develop culturally appropriate cancer care in Australia. METHODS: Respondents were recruited from first generation Australian residents. Twenty-nine men and 29 women, half over and half under the age of 60 years, participated. Eight focus groups were conducted by a bilingual facilitator and supplemented with eight individual face to face interviews. RESULTS: Several areas of misunderstanding were identified concerning the causes and outcomes of cancer. Having a cancer was regarded as a source of shame. Disclosure of diagnosis, but less so prognosis, was favoured, and only to immediate family members. Family members translating for the doctor were reported to commonly alter or 'soften' the doctor's message without the patient's knowledge in order to protect the patient. Greek doctors were favoured, and open discussion of alternative medicines was sought. CONCLUSIONS: The Greek community is the most established migrant community in Australia, but clearly many of their attitudes to cancer are at variance with what is considered good practice by clinicians. An increased awareness of cultural differences is needed to achieve optimal health outcomes in the diverse communities that make up modern Australia.

Adult↗
PubMed1991

Does "telling" less protect more? Relationships among age, information disclosure, and what children with cancer see and feel.

Parents report telling young children less about the diagnosis, treatment, and prognosis of cancer than older children and adolescents. This is often based on the desire to spare children from being overwhelmed. 43 children diagnosed with cancer reported on information disclosed to them at diagnosis, their causal attributions, illness-related stress, and coping strategies. Consistent with parental reports, children under 9 years (n = 18) were told less than children 9-14 years (n = 15) and adolescents (n = 10). Young children's reports of illness impact differed from older children and adolescents only with respect to school and social domains. Younger children reported fewer cognitive strategies than older children and adolescents. Even though young children were told much less than older children they reported similar levels of distress. This suggests that nondisclosure fails to mask the salient and distressing aspects of the illness.

Adaptation, Psychological↗
PubMed1995

The adequacy of medical ethics education in a pediatrics training program.

PURPOSE: To identify ethical dilemmas commonly encountered during pediatrics training as a step toward improving medical ethics curricula for residents. METHOD: The authors identified seven recurring topics by reviewing the required case reports on ethical dilemmas experienced by students in the third-year pediatrics clerkship from June 1992 to June 1994 at the State University of New York at Buffalo School of Medicine and Biomedical Sciences. Based on the topics identified, the authors then surveyed pediatrics housestaff in 1993-94 regarding the frequency of encountering the topics, levels of comfort in addressing the topics, role models and resources, and perceived need for improved training. RESULTS: A total of 214 student essays were reviewed. Thirty-six of 50 residents responded to the survey. In the following list of the seven topics, percentages are given for students who reported the topic, for residents who encountered the topic "very frequently" or "sometimes," and for residents who felt "very comfortable" or "somewhat comfortable" addressing the topic: child abuse or neglect (students reported, 28%, residents encountered, 94%, residents felt comfortable, 86%); use of heroic measures to maintain a terminal patient (20%, 89%, 69%); patient confidentiality (19%, 81%, 92%); resource allocation (12%, 67%, 54%); surrogate decision making (7%, 69%, 75%); patient autonomy (4%, 86%, 69%); and disclosure of information (2%, 69%, 60%). Eighty percent of the residents felt they could not intervene when they disagreed with decisions; 69% felt their training had not prepared them to address ethical dilemmas; 69% thought attending physicians were interested in discussing ethical issues; and 74% desired more training. CONCLUSION: Based on their self-reported experiences with topics identified as occurring frequently in pediatrics training, the residents perceived their training to be inadequate and desired more ethics education, but felt that the faculty were willing to assist in that training.

Adolescent↗
PubMed1992

Men's disclosure of HIV test results to male primary sex partners.

We evaluated disclosure of human immunodeficiency virus (HIV) antibody status to a main sex partner and the impact on the relationship in men who have sex with men and who are enrolled in the Acquired Immunodeficiency Syndrome (AIDS) Community Demonstration Projects cohorts. Eighty-nine percent of both seronegative and seropositive men disclosed the results to their main sex partner. Seventy percent of the seronegative men and 82% of the seropositive men who did so reported that the relationship remained "as strong as ever" after 6 months. Most men who did not disclose their test results to their main partner reported being "single" after 6 months.

Adult↗
PubMed2006

Trust in physicians and elements of the medical interaction in patients with rheumatoid arthritis and systemic lupus erythematosus.

OBJECTIVE: To identify components of the patient-doctor relationship associated with trust in physicians. METHODS: We assessed 102 patients with systemic lupus erythematosus (SLE) or rheumatoid arthritis (RA) seen at publicly funded hospitals in Houston, Texas. Patients completed a self-response survey examining patient perceptions of the medical encounter and trust in their physicians. Evaluated components of physicians' behaviors included: informativeness, sensitivity to concerns, reassurance and support, patient-centeredness, and participatory decision-making style. Scales were scored 0 to 10, with higher numbers indicating more positive perceptions of communication. RESULTS: Seventy patients had RA and 32 SLE; 25% were white, 43% Latino, 31% African American, and 75% were female. Mean scores for the medical interaction and trust scales ranged from 6.2-7.1, indicating moderate degrees of positive perceptions. All components were highly and positively correlated with each other, and with trust, suggesting that these traits are all elements of a positive style of doctor-patient communication. In multivariate analysis, ethnicity, physicians' informativeness, physicians' sensitivity to concerns, patient-centeredness, disease activity, and patient trust in the US health care system were independent predictors of trust in physicians. A separate model examined the predictors of patient disclosure of information. Patient perceptions of physicians' patient-centeredness and severity of disease activity were independently predictive of patient disclosure of information. CONCLUSION: In patients with SLE and RA, trust in physicians is significantly associated with patients' ethnicity and their perceptions about specific components of physicians' communication style. Trust in physicians can be improved by using a patient-centered approach, being sensitive to patient concerns, and providing adequate clinical information. Furthermore, patients appear to be more willing to disclose concerns when physicians use a patient-centered communication style.

Adult↗
PubMed2001

Information needs of patients with cancer: results from a large study in UK cancer centres.

As part of a multi-centred study evaluating a communication skills training model for clinicians, we collected information preferences using an adaptation of Cassileth's Information Needs questionnaire from a heterogeneous sample of 2331 patients. Results showed that 87% (2027) wanted all possible information, both good and bad news and 98% (2203) preferred to know whether or not their illness was cancer. Cross tabulation of responses revealed no significant differences in information preferences for tumour site or treatment aims but did show an effect of age and sex. The few 58/440 (13.2%) patients who stated that in general they preferred to leave disclosure of details up to the doctor, tended to be older patients more than 70 years of age (chi square = 26.01, df = 2, P< 0.0001), although paradoxically they still wanted to know certain specific details. In comparison to men women preferred to know the specific name of the illness (chi square = 4.9, df = 1, P< 0.02) and what were all the possible treatments (chi square = 8.26, df = 1, P< 0.004). The results from this very large sample provide conclusive evidence that the vast majority of patients with cancer want a great deal of specific information concerning their illness and treatment. Failure to disclose such information on the grounds that significant numbers of patients prefer not to know is untenable.

Adult↗
PubMed2001

Cultural and religious influences in maternal response to intrafamilial child sexual abuse:charting new territory for research and treatment.

The role of culture when providing services for families in the wake of child sexual abuse disclosure is a charged issue although surprisingly little attention has been given in the research literature to this. This article reports the findings of a grounded theory study exploring facets of maternal response, and aspects of more and less supportive responses, to children who were sexually abused by the mother's intimate partner. Ten mothers, chosen on the basis of theoretical sampling, provided information through in-depth interviews to understand how they responded emotionally and behaviourally to their child's disclosure. As well, three service providers were interviewed as key informants. The research revealed cultural and religious influences as affecting how mothers made meaning of the sexual abuse and the actions they took. Mothers from cultural backgrounds that adhere to rigid patriarchal norms identified themes of intense value conflicts regarding family preservation, loyalty binds between the perpetrating partner and child victim, and anxieties around being alienated from their extended family and ethnic community. They also reported that their cultural belief systems were not well understood by service providers. In parallel, helping professionals identified cultural issues as presenting barriers for engaging with some clients. Practice implications and research directions are discussed.

Adult↗
PubMed1988

Censoring of patient-held records by doctors.

Computer-held information is increasingly shared between general practice and hospitals and with the provisions of the Data Protection Act now in operation, the practical issues of disclosure to patients need to be reviewed. Patients attending diabetic clinics at University Hospital, Nottingham, are routinely issued with a copy of their computerheld record but a previous study showed a high level of censoring by the hospital doctors. This paper reports a review of a sample of 251 censored records, containing 426 problems, whereby the doctors concerned provided reasons for the censoring and restored information they thought suitable. After the review, only 8% of censored problems, that is 1% of all problems, remained censored. An additional 2% of all problems were deleted from the patient's copy at the request of the patient. It is essential that systems which allow censoring of patient records have continuous built-in audit to monitor the reasons for censoring.

Computers↗
PubMed1992

The diagnosis of child sexual abuse.

OBJECTIVE: To examine how the history, psychological evaluation, medical examination, and child's response to the examination contributed to a diagnosis of child sexual abuse by an interdisciplinary team. DESIGN: Patient series. SETTING: Subspecialty clinic for evaluating prepubertal children alleged to have been sexually abused. PARTICIPANTS: One hundred thirty-two children alleged to have been sexually abused and their parents or guardian, evaluated consecutively in a subspecialty clinic between September 1989 and June 1990. MEASUREMENTS/MAIN RESULTS: A social worker interviewed the parents, a psychologist interviewed the child, and a pediatrician obtained a medical history and examined the child. Parents completed a Child Behavior Check list and the child's response to the physical examination was noted. Both a disclosure by the child and abnormal physical findings were significantly and independently associated with the team's diagnosis of sexual abuse, whereas the presence of sexualized behavior, somatic problems, and the child's response to the examination did not make an additional contribution to the diagnosis. CONCLUSIONS: The findings support the need for a skilled psychological interview and a medical examination of a child alleged to have been sexually abused to make the diagnosis of sexual abuse. An interdisciplinary team appears to be a valuable approach for evaluating these children and their families.

Baltimore↗
PubMed2003

Action knowledge, acknowledgment, and interpretive action in work with Holocaust survivors.

Survivors withhold disclosure of suffering when their terror is unwitnessed and when their expectation of disbelief or disregard obfuscates the reality of persecution. Knowledge itself then becomes traumatized, losing the power to inform and mobilize action. Survivors become habituated to suffering in a manner that subverts meaning, dampens vitality as well as pain, and arrests empathic connectedness. The dearth of transferential cues in such depleted existences leaves analysts in doubt as to whether they have been unintrusive or unavailable to these patients. Restoring survivors' sense of being witnessed requires interpretive actions that acknowledge the suffering that survivors have lost the will and means to make known or even represent. Such interventions draw on analysts' own projective identifications and use of the self, counterposing the will to live against the resignation to unwitnessed terror.

Holocaust↗
PubMed1989

Factors influencing mothers' reactions to intrafamily sexual abuse.

A mother's question of whether to believe her child's disclosure of intrafamily child sexual abuse is complex, with many factors influencing her conclusion. Variables related to the abuse and to the family's functioning are examined to determine if particular circumstances are too threatening to mothers, resulting in their disbelief. The findings indicate that the age of the victim, nature of the abuse, presence of the mother in the home during the abuse, relationship of the victim to the offender, prior physical abuse of the child, and alcohol abuse by the offender all contribute to mother's conclusion regarding the reported abuse. The majority of mothers do believe their child, with difficult situations and other family stressors occasionally detracting from a mother's willingness to accept the report.

Adaptation, Psychological↗
PubMed1999

Transmitting genetic risk information in families: attitudes about disclosing the identity of relatives.

Attitudes about disclosing the identities of family members to a physician to ensure diffusion of genetic risk information within affected families were examined in a questionnaire study of Danish patients with alpha1-antitrypsin deficiency (A1AD), their relatives, and a control group of Danish citizens. The questionnaires were returned by 1,761 (82%) of 2,146 recipients; 1,609 (75%) agreed to participate and completed the questionnaire. Only 2.8% objected to disclosing the identity of children, 9.1% objected to disclosing the identity of parents, and 6.7% objected to disclosing the identity of siblings. When genetic tests are offered to a sister, 75.4% of screened individuals with severe A1AD (phenotype "piZ") and 66.8% of piZ probands thought that the physician should say who is ill. Important reasons for informing a sister at risk were, for 58%, the opportunity to prevent disease and, for 41% of piZ-probands, the opportunity to maintain openness in the family and to avoid uncertainty. Stepwise logistic regression of background variables showed that relatives were those for whom most respondents approved the disclosure of the parents' and siblings' identities to enable the physician to examine them for the presence of A1AD. Women were less prone to disclose the identity of siblings. The results indicate that the genetic counselor should inquire about relatives' identities, to ensure that they are properly informed about the known risk of severe genetic disorder, such as A1AD, for which disability can be prevented by a change of lifestyle or by careful management. Disease prevention is essential, but openness and avoidance of uncertainty in affected families are also important. Our findings imply that fully informing all relatives about the disorder and about who is actually ill should be the principal rule.

Attitude↗
PubMed2001

Deciding where and how to be tested for HIV: what matters most?

This study examined preferences for specific types of HIV tests as well as for test attributes such as cost, counseling, and privacy. A survey was administered to 354 clients of public testing services. Nonparametric tests and logistic regression were used to compare test preferences and attribute ratings, and to assess differences by demographic and risk groups. Nearly two thirds of respondents chose a public clinic test as their first choice, whereas 24% chose a home self-test, 12% chose a test at a doctor's office, and 1% chose a home specimen-collection test. Three attributes (accuracy/timeliness, privacy of test disclosure, and linking of test results) were rated equally-and most-important. In-person counseling was endorsed as the fourth most important attribute. Availability of in-person counseling was the strongest predictor of "loyalty" to public clinic tests-a consistent preference for that type of test even when the other tests were offered as additional no-cost options. There was also substantial interest in home self-tests. The results suggest specific attributes of testing that may be particularly important to individuals from diverse demographic and risk backgrounds.

AIDS Serodiagnosis↗
PubMed2001

Men at risk of being a mutation carrier for hereditary breast/ovarian cancer: an exploration of attitudes and psychological functioning during genetic testing.

Males with a BRCA1/BRCA2 mutation are not at greatly increased risk for cancer, whereas their (grand)daughters, and other female relatives who carry the mutation, are. Males from BRCA1/BRCA2 families may opt for genetic testing to confirm whether or not they may have transmitted the mutation to their children and, if so, to inform them at an appropriate age about the genetic risk and its implications. The psychological implications of genetic testing for men at risk of being a BRCA1/BRCA2 mutation carrier have received little attention. We report on 28 men requesting BRCA1 or BRCA2 testing, and their partners. Men were at 25% (n =4) or 50% risk (n =24) of being a mutation carrier, the majority with daughters and half of them with daughters aged over 20 years. Levels of psychological distress were assessed several weeks before and after disclosure of the test result. In addition, we investigated the level of intrusive thoughts and feelings about breast and ovarian cancer and the tendency to avoid these. By means of interviews and questionnaires, participants could report on (expected) emotional implications of genetic testing for themselves and their children, on experiences with cancer in the family and on personality trait optimism. Distress levels prior to the result in tested men and their partners were low. Many men and partners expected the test result to affect their children's, but not their own level of problems. Men without daughters and those with an optimistic personality had especially low distress prior to disclosure. Most men reported that they did not actively avoid the issue. Only four of the 28 men were identified as mutation carriers. High distress after disclosure of the result was reported by one mutation carrier and by three non-mutation carriers. Verbatim transcripts from interviews showed a large variation of psychological reactions in male mutation carriers (eg regarding guilt feelings). Low pre-test distress in males does not necessarily indicate avoidance of the issue. Future studies may indicate which psychological reactions occur in male mutation carriers when the problem becomes more acute, eg when a daughter is found to carry the mutation and/or is diagnosed with breast or ovarian cancer.

Adult↗