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PubMed2003

Ultrasound screening in pregnancy: advancing technology, soft markers for fetal chromosomal aberrations, and unacknowledged ethical dilemmas.

Fetal ultrasound screening has become routine practice in many western countries. During the last decade, such screening has led to frequent situations characterised by clinical uncertainty due to the disclosure of soft markers in the unborn child. Soft markers are minor anatomical variations indicating a somewhat increased likelihood that the fetus has a chromosomal aberration, most frequently trisomy 21 (Down syndrome). This paper presents the results of a comprehensive literature search of the National Library of Medicine with emphasis on the chronological development of scientific knowledge in relation to soft markers and the link between advancing imaging technology and clinical counselling dilemmas. An analysis of the literature makes evident that many ultrasound examiners have counselled individual pregnant women on the basis of insufficient data. Moral dilemmas have thus emerged as a direct result of advancing medical technology, and healthy fetal lives prove to have been lost due to invasive diagnostic testing aimed at resolving clinical uncertainty. Ultrasound examiners have warned against a policy of disclosing all findings of soft markers to expectant parents, but no exploration of experiential aspects linked to the disclosure of fetal soft markers has yet been published in the medical literature. The emotional reactions of mothers are important to consider given their potential impact on the biological development of the fetus. In conclusion, this paper stresses the need for paying close attention to the crucial distinction between technology development and technology implementation in relation to prenatal testing. Furthermore, it provides strong arguments for scrutinising the interface between prenatal testing and human experience.

Biomarkers↗
PubMed1992

Medical disclosure and refugees. Telling bad news to Ethiopian patients.

The strong value in American medical practice placed on the disclosure of terminal illness conflicts with the cultural beliefs of many recent refugees and immigrants to the United States, who often consider frank disclosure inappropriate and insensitive. What a terminally ill person wants to hear and how it is told are embedded in culture. For Ethiopians, "bad news" should be told to a family member or close friend of the patient who will divulge information to the patient at appropriate times and places and in a culturally approved and recognized manner. Being sensitive to patients' worldviews may reduce the frustration and conflict experienced by both refugees and American physicians.

Adolescent↗
PubMedDate not supplied

Factors associated with parents' decision to disclose their HIV diagnosis to their children.

Parents report that trying to decide whether or not to disclose their HIV diagnosis to their children is as emotionally charged as learning of the diagnosis itself. As part of a larger study, interviews were conducted with 17 parent-child dyads recruited from patients being treated at the National Cancer Institute to understand the factors that affect the process of disclosure of a parent's HIV diagnosis and its consequences. Parents and HIV-infected children were also interviewed and were administered several standardized measures for collecting information on parental depression, family environment, and social support satisfaction. The factors associated with a parent's decision to disclose his or her diagnosis to the children, and implications for clinical practice and future research, are discussed.

Adolescent↗
PubMed2006

Help-seeking rates for intimate partner violence (IPV) among Canadian immigrant women.

We examined rates of help seeking for intimate partner violence (IPV) among recent (0-9 years in Canada) and non-recent (10+ years in Canada) immigrant women. Data from a national, cross-sectional, telephone survey were used. Help-seeking variables included disclosure of IPV, reporting IPV to police, use of social services subsequent to IPV, and barriers to social service use. Recent immigrant women, compared with non-recent immigrant women, were significantly more likely to report IPV to police and less likely to use social services. Findings have important implications for prevention and detection of IPV in immigrant communities and in future research.

Adult↗
PubMed2005

Abortion disclosure and the association with domestic violence.

OBJECTIVE: To estimate the rate at which women disclose abortion to their partners and examine the association between domestic violence and partner disclosure. METHODS: A cross-sectional cohort study was performed on women presenting for elective termination of pregnancy to a single clinic in Houston, Texas. Subjects were offered an anonymous, self-administered questionnaire. The 15-question survey addressed disclosure of abortion to the partner, reasons for nondisclosure if applicable, and physical and sexual abuse using a modified Abuse Assessment Screen. RESULTS: Of 960 patients, 85.2% completed the survey, for a final sample size of 818. Overall, 139 (17.2%) of subjects chose not to disclose the abortions to their partners, and 14% of patients reported abuse within the past year. Physical or sexual abuse or both was twice as common among nondisclosers (23.7% compared with 12.0%, P = .001). Among nondisclosers, 63 (45.3%) said the relationship with the partner had no future, 52 (37.4%) did not feel obliged to notify their partners, 29 (20.9%) said the partner would oppose the abortion, and 11 (7.9%) said disclosure would result in physical harm. CONCLUSION: In this urban, racially and socioeconomically diverse population, 17.2% of women concealed pregnancy terminations from their partners. Although relationship instability and personal choice were cited as the most frequent reasons for nondisclosure, the rate of domestic abuse was twice as high in this group and may have adversely affected open communication. Of greatest concern, a subset of nondisclosers reported the direct fear of personal harm as the primary reason for nondisclosure.

Abortion, Induced↗
PubMed2002

Safety issues as exemplified by the activities of the Joint Commission on Accreditation of Healthcare Organizations: context for the safety and disclosure standards.

The author, the General Counsel of the joint Commission on Accreditation of Healthcare Organizations, discusses the concerns that have been raised about the Commission's Patient Safety standards and Sentinel Event policy. Mr. Bressler understands the view that compliance with the Commission's standards and procedures (which are designed to help advance safety in our healthcare system) could, in particular cases and under certain circumstances, heighten litigation risks, but emphasizes the benefits attainable from systematic analysis of errors. Moreover, the article concludes that thoughtful lawyering by counsel for healthcare organizations can help minimize any risks, pending legislation establishing the needed certainty in the law.

Accreditation↗
PubMed1994

Evaluations of children who have disclosed sexual abuse via facilitated communication.

OBJECTIVE: To review the findings of interdisciplinary team evaluations of children who disclosed sexual abuse via facilitated communication. DESIGN: Case series. SETTING: Tertiary care hospital outpatient child sexual abuse program in central New York. PATIENTS: Between January 1990 and March 1993, 13 children who disclosed sexual abuse via facilitated communication and were referred to a university hospital child abuse referral and evaluation center. The range of previously determined developmental diagnosis included mental retardation, speech delay, and autism. INTERVENTIONS: None. MAIN OUTCOME MEASURES: Medical records were reviewed for (1) disclosure, (2) physical evidence, (3) child's behavioral and medical history, (4) disclosures by siblings, (5) perpetrator's confession, (6) child protective services determinations, and (7) court findings. RESULTS: Four children had evidence of sexual abuse: two had physical findings consistent with sexual abuse, one also disclosed the allegation verbally, and one perpetrator confessed. CONCLUSIONS: These results neither support nor refute validation of facilitated communication. However, many children had other evidence of sexual abuse, suggesting that each child's case should be evaluated without bias.

Adolescent↗
PubMed2007

The return of research results to participants: pilot questionnaire of adolescents and parents of children with cancer.

PURPOSE: The offer to return research results to participants is increasingly recognized as an ethical obligation, although few researchers routinely return results. We examined the needs and attitudes of parents of children with cancer and of adolescents with cancer to the return of research results. METHODS: Seven experts in research ethics scored content validity on parent and adolescent questionnaires previously developed through focus group and phone interviews. The questionnaires were revised and provided to 30 parents and 10 adolescents in a tertiary care oncology setting. RESULTS: The content validity index for individual questions and the overall questionnaires scored as 0.86 for both questionnaires. All 30 parents and 10 adolescents who agreed to participate returned questionnaires. The majority (>95%) indicated that they had a strong or very strong right to receive results. Letter or e-mail was a satisfactory means to return results described as good or neutral (66% parents, 100% adolescents) but more participants wished face-to-face disclosure of results with negative implications (50% parents, 60% adolescents). Very few wanted results disseminated through a Web site. The majority acknowledged the need for peer-review before disclosure (60% of adolescents and parents) but did not want "to be the last to know." CONCLUSIONS: Our data suggest that pediatric oncology patients and parents of children with cancer strongly feel that they have a right to research results, and that they wish to receive these in a timely manner.

Adolescent↗
PubMed1994

The social impact of HIV infection on women in Kigali, Rwanda: a prospective study.

In Rwanda, a central African country, the prevalence of HIV infection now exceeds 30% in urban adults. This study identifies the social services and counseling needs of women who are already infected with the HIV virus, the outcome after disclosure of the woman's HIV test result to her partner and estimates the social support available to the women from their partners and relatives. Fifty-five HIV-positive women in Kigali were interviewed in 1988 and 47 of this group were interviewed again in 1991. The social services most needed by the women in 1988 were housing, employment and money. By 1991, the women prioritised food, housing and money as their current needs and food, childcare and money were their future needs in the event they became ill. The preferred sources of support in 1988 were individual counseling and women's support groups. By 1991, the preferred sources of support were individual counseling and their priest. In 1988, almost 75% of the women did not expect a supportive reaction from their partners after disclosure of the test result. In 1991, acceptance, understanding and sympathy were the most common reactions of the partners after disclosure. However, 8 (21%) had not told their partner their test result. After disclosure, 18 of the 37 partners were subsequently tested. Of those tested, 75% were HIV-positive and 25% were HIV-negative. Condom use was almost twice as high when the partner was informed of the test result, although in couples overall, a third were not using condoms despite knowing the test result.(ABSTRACT TRUNCATED AT 250 WORDS)

Activities of Daily Living↗
PubMed2006

Dementia in primary care: the first survey of Irish general practitioners.

OBJECTIVE: To investigate General Practitioners' (GPs) attitudes and practices in relation to screening, diagnosing, and disclosing a dementia diagnosis to patients. DESIGN: National postal survey. PARTICIPANTS: A random sample of 600 GPs from a national database of 2,400. RESULTS: Of the 600 GPs surveyed, 60% returned questionnaires of which 50% (300) were useable. GPs reported diagnosing on average four new cases of dementia annually. A multivariate analysis revealed that females diagnosed significantly fewer cases annually (t=5.532, df=289, p<0.001). A large majority of GPs reported performing thyroid function tests (77%), B(12) (75%) and Folic acid tests (75%) to out rule reversible causes of cognitive impairment. The most reliable signs and symptoms of dementia identified were memory problems (58%). Main barriers to diagnosis were difficulty differentiating normal ageing from symptoms of dementia (31%), lack of confidence (30%) and the impact of the diagnosis on the patient (28%). GPs' age (chi(2)=14.592, df=3, p<0.005) and gender (chi(2)=11.436, df=3, p<0.01) were significantly associated with barriers to diagnosis. Only 19% claimed they often or always disclosed a diagnosis to a patient. Over one-third of GPs (38%) reported that the key factor influencing their disclosure patterns was their perceptions of the patient's level of comprehension. Most GPs (90%) had never undergone any dementia specific training and most (83%) expressed a desire for this. CONCLUSIONS: GPs experience difficulty diagnosing and disclosing a diagnosis of dementia to patients. To improve dementia care in Ireland, there is an urgent need to develop an active and more systematic approach to GP training in dementia care.

Adult↗
PubMed2002

Parent-child factors and their effect on communicating BRCA1/2 test results to children.

The purpose of the present study was to evaluate the likelihood and the effect of parent-child factors on communicating about maternal genetic test results for breast/ovarian cancer risk. Subjects were 42 mothers enrolled in a hereditary breast cancer research program who reported on their interactions with 68 target children. Predictor variables (demographic, clinical, and psychological) were assessed at baseline after mothers participated in a comprehensive genetic counseling/education session and provided a blood sample for BRCA1/2 mutation analysis. Maternal communication of test results to children was assessed 1 month after mothers learned their mutation status. The rate of disclosure to pediatric-age children was 53%. Older children were more likely to be informed of their mothers' test results than were younger children. Maternal disclosure of genetic test results to children was also more likely to occur in the presence of more open parent-child communication styles, though the act of disclosing did not appear to impact communication style. These findings suggest that in addition to developmental phase, family behavioral interactions and communication styles are strongly predictive of whether or not mothers choose to share cancer genetic risk information with their children.

Adolescent↗
PubMed2002

John M. Eisenberg Patient Safety Awards. Advocacy: the Lexington Veterans Affairs Medical Center.

BACKGROUND: After the Veterans Affairs Medical Center (VAMC) in Lexington, Kentucky, lost two major malpractice cases in the mid-1980s, leaders started taking a more proactive approach to identifying and investigating incidents that could result in litigation. An informal risk management team met regularly to discuss litigation-prone incidents. During one in-depth review, the team learned that a medication error had caused the patient's death. Although the family would probably never have found out, the team decided to honestly inform the family of exactly what had happened and assist in filing for any financial settlement that might be appropriate. This decision evolved into an organization wide full disclosure policy and procedure. DISCLOSURE POLICY AND PROCEDURE: The Lexington VAMC's policy on full disclosure includes informing patients and/or their families of adverse events known to have caused harm or injury to the patient as a result of medical error or negligence. The disclosure includes discussions of liability and also includes apology and discussion of remedy and compensation. RESULTS: Full disclosure is the right thing to do and the moral and ethical thing to do. Moreover, doing the right thing actually seems to have mitigated the financial repercussions of inevitable adverse events that result in injury to patients. As reported in 1999, Lexington VAMC was in the top quarter of medical centers for number of tort claims filed but was in the lowest quarter for malpractice payouts resulting from these torts.

Awards and Prizes↗
PubMed2000

Public disclosure of a child's HIV infection: impact on children and families.

As an increasing number of children infected with HIV live to older ages, the question of disclosure of the diagnosis (to the child and to others) becomes more crucial. Disclosure of a child's HIV diagnosis is a controversial and emotionally laden issue. One reason that families avoid disclosure is their fear of the negative impact on the child and family that the stigma associated with AIDS can bring. At the other end of the spectrum, are those families that choose to publicly disclose an HIV diagnosis. There are a number of reasons that a family may choose to go public with their child's diagnosis, although this has never been systematically assessed. The dearth of literature and research regarding the emotional impact of public life on a child as well as the interest of a number of non-public HIV-infected children to "go public" served as an impetus to conduct a study that directly examined the impact public disclosure has on the HIV-infected child and family. Specifically, findings pertaining to the decision making process, the impact public disclosure has had on the child's family, and the child's sense of self-worth at the time of the study and then again 4 years later are reviewed. Findings and implications for future research as well as interventions and strategies aimed at counseling families considering "going public" and helping to normalize the public child's life are discussed.

Adaptation, Psychological↗
PubMed1986

Randomised comparison of procedures for obtaining informed consent in clinical trials of treatment for cancer.

Methods of obtaining informed consent have evolved differently in Western countries without substantive information on the impact of these different practices on the patients. A randomised study was performed to compare two commonly adopted methods of seeking consent to randomised treatment: an individual approach at the discretion of each doctor and a uniform policy of total disclosure of all relevant information. The impact of both consent procedures on the patient's understanding and anxiety levels and on the doctor-patient relationship was assessed by means of a questionnaire given soon after the consent interview. Fifty seven patients were assigned at random to two groups: to 29 patients an individual approach to seeking consent was adopted and to 28 patients all relevant information was given. Seven patients refused consent to randomised treatment, with slightly more refusals by patients in the total disclosure group (5 v 2, p = 0.25). The main effects of total disclosure of all information compared with an individual approach to seeking consent were: a better understanding of treatment and side effects and of research aspects of the treatments; less willingness to agree to randomised treatment; and increased anxiety. No significant differences were found in patients' perceptions of the doctor-patient relationship. A repeat questionnaire given three to four weeks later no longer showed significant differences between the two groups.

Anxiety↗
PubMed1984

Down's syndrome: is dissatisfaction with disclosure of diagnosis inevitable?

A survey of a representative sample of 62 parents of Down's syndrome infants revealed a high level (58 per cent) of dissatisfaction with the procedure for disclosing the diagnosis and with the immediate counselling services. From the replies and previous reports, a 'model procedure' was set up in one Area Health Authority to test the hypothesis that dissatisfaction is inevitable. Parents receiving the 'model procedure' reported 100 per cent satisfaction, compared with 20 per cent in a control group. It was concluded that dissatisfaction is not inevitable but results directly from organisational difficulties in not providing the necessary service.

Adaptation, Psychological↗
PubMed2007

Preferences of cancer patients regarding the disclosure of bad news.

To understand patients' preferences regarding the disclosure of bad news is important in the clinical oncology setting. The aim of this study was to clarify descriptively the preferences of cancer patients. Five hundred and twenty-nine Japanese cancer outpatients were surveyed regarding their preferences regarding the disclosure of bad news, and several psychosocial and medical demographic variables were analyzed. In a descriptive analysis, more than 90% of the patients strongly preferred to discuss their current medical condition and treatment options with their physician and to have their physicians take the feelings of their family into consideration as well. While half of the patients preferred to receive information regarding their life expectancy, 30% preferred not to receive it. Multiple regression analyses indicated the preferences showing interindividual variations were associated with the level of education and the mental adjustment to cancer scores. A factor analysis revealed four preferences factors: method of disclosure of the bad news, provision of emotional support, provision of additional information, and setting. These four factors had good internal consistency reliability (Cronbach's alpha = 0.93-0.77). Providing emotional support, including the desire for the physician to show consideration for the patient's family, and understanding an individual's communication preferences may be useful for promoting patient-physician communication.

Adult↗
PubMed1994

Children's disclosure of sexual abuse during formal investigation.

This study set out to provide information on children's disclosures of sexual abuse during formal child sexual abuse investigation. The study was carried out in a Child Sexual Abuse Assessment Unit based in a Children's Hospital, staffed by a multidisciplinary team and receiving referrals from community child protection agencies, pediatricians, general practitioners, and the police. Two hundred and fifty one children who had full assessments over a 12-month period formed the study group. They were divided at time of referral into two groups: (a) those who had previously told someone about abusive experiences prior to investigations; and (b) those who had not. There was a strongly positive correlation between having previously told someone about sexual abuse and disclosure of such abuse during formal investigation. There was also a strongly positive correlation between not having previously told someone and not disclosing during formal investigation. Age was an important variable, with children under 5 being least likely to disclose abuse during formal investigation, irrespective of whether they had previously told someone about abuse. Disclosure of sexual abuse during investigation was strongly positively correlated with abuse being regarded as confirmed. These results call into question the value of formal sexual abuse investigation in children who have not previously told someone about abuse. The value of a "nonleading" interview style with young children is also called into question, given that many young children who had previously disclosed abuse, did not repeat this information during formal investigation in which "nonleading" interviews were used.

Adolescent↗
PubMed2001

Women's barriers to HIV-1 testing and disclosure: challenges for HIV-1 voluntary counselling and testing.

In view of the ever-increasing HIV/AIDS epidemic in sub-Saharan Africa, the expansion of HIV-1 voluntary counselling and testing (VCT) as an integral part of prevention strategies and medical research is both a reality and an urgent need. As the availability of HIV-1 VCT grows two limitations need to be addressed, namely: low rates of HIV-1 serostatus disclosure to sexual partners and negative outcomes of serostatus disclosure. Results from a study among men, women and couples at an HIV-1 VCT clinic in Dar es Salaam, Tanzania are presented. The individual, relational and environmental factors that influence the decision to test for HIV-1 and to share test results with partners are described. The most salient barriers to HIV-1 testing and serostatus disclosure described by women include fear of partners' reaction, decision-making and communication patterns between partners, and partners' attitudes towards HIV-1 testing. Perception of personal risk for HIV-1 is the major factor driving women to overcome barriers to HIV-1 testing. The implications of findings for the promotion of HIV-1 VCT programmes, the implementation of partner notification policies and the development of post-test support services are discussed.

Africa South of the Sahara↗