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PubMed2002

Ethical reflections on pharmacogenetics and DNA banking in a cohort of HIV-infected patients.

The aim of this study was to analyse ethical issues concerning the storage of human biological samples to be used in genetic analyses and pharmacogenetic research based on a French experience of DNA banking in a cohort of human immunodeficiency virus (HIV)-infected patients started on a protease inhibitor-containing treatment. We describe the ethical issues raised during the establishment of a DNA bank, including questions dealing with autonomy, benefit to the patient, information sharing and confidentiality as well as guarantees concerning the storage and use of DNA. The practical applications of themes illustrated theoretically in the literature are discussed. Most of the points raised are not specific to HIV, but some of them may be more accurate due to the characteristics of the HIV population, which is more involved in the social debate through the community life and the increased risk of stigmatization. Our results are summarized in the memorandum and consent form presented in the Appendices. One issue still open to discussion is the way the results of genetic data will be given to the patients. This work should allow other researchers and members of evaluation committees to enrich their considerations and should stimulate discussion on this topic.

Biological Specimen Banks↗
PubMed1985

Self-esteem in later life: a nursing perspective.

Self-esteem provides a measure for the quality of life of the elderly in long-term care. This article defines self-esteem in relation to self-concept and identifies the antecedents that affect its development. Elements of labeling theory, activity theory, and social exchange theory are explored to account for a potential decline in self-esteem among the elderly. According to this electric theoretical framework, stigmatization, decreased social interaction, and loss of control over the environment are all negatively correlated with self-esteem. Institutionalization intensifies the effect of these forces. Nursing is in a unique position to promote self-esteem by combating ageism, promoting social interaction, and maximizing the control and participation of elderly residents.

Aged↗
PubMed1996

Sources of stigma associated with women with HIV.

In the United States many women infected with the human immunodeficiency virus (HIV) are poor women of African American or Hispanic American descent. Women with HIV have experienced many forms of oppression and discrimination and have been blamed as the victims of HIV and labeled as drug users, prostitutes, and carriers of acquired immune deficiency syndrome (AIDS). They have been stigmatized for their gender, their sexuality, their minority status, and their poverty, as well as for their HIV-positive status. Stigma theory is used in this article to explore the sources of stigma associated with this vulnerable group of clients.

Female↗
PubMed1999

The social construction of love and sexuality in a women's prison.

Incarcerated women have numerous physical, social, and emotional health care needs, including specific needs related to their expressions of sexuality while in prison. This report describes the results of a participatory action research study with incarcerated women utilizing critical hermeneutic data analysis techniques. While the public's view of sexuality between incarcerated women borders on the prurient and profane, this study suggests that women in prison continue to be sexual beings who come to "participate" in love and sex with one another based on their need for relationship and friendship. It is suggested that prison bureaucracies define women through a sexual lens, dually grounding their identities in the crimes they were sent to prison for and the perceived crimes of their sexuality. The need for nursing involvement and intervention with this marginalized and stigmatized population is discussed.

Female↗
PubMed2000

Recovering: a process of empowerment.

Persons with borderline personality disorder constitute a vulnerable population not only because of the natural history of the disorder, but also because they are frequently stigmatized by persons entrusted with altering the course of the disorder. In this article, the predominant forms of treatment that have been available to persons with borderline personality disorder are reviewed, and it is concluded that they are, albeit unintentionally, oppressive. It is demonstrated how a critical examination of the concept of recovery opens the possibility for delivering care in a fundamentally different way. Grounded in the underlying assumptions of recovery and interpretive phenomenological research, a proposal that moves beyond recovery toward developing and disseminating a practical theory of recovering is presented.

Borderline Personality Disorder↗
PubMedDate not supplied

Obesity, stigma, and civilized oppression.

The study was conducted to explore what it is like for individuals and family members to live with obesity as a chronic illness. An interpretive phenomenological design was used to obtain and analyze interviews of 13 obese individuals and 5 of their family members. A convenience sample was used to recruit the subjects who participated in the audiotaped interviews. The interviews used open-ended questions. Audiotapes were transcribed and analyzed for identifying the major themes within each transcript, and patterns of meaning across narratives. The major themes and patterns were described through written essays and group discussions about the transcripts. The participants revealed frequent experiences of stigmatization and discrimination on the basis of their obesity. Those who are obese are reminded through their everyday encounters with family members, peers, healthcare providers, and strangers, that their being deviates from social norms, and that they are inferior to those who are not obese. Obese subjects experience a pattern of denigration and condemnation that is so pervasive as to constitute what Harvey has called civilized oppression. A discussion of the social construction of obesity and the elements of civilized oppression, as they are experienced by those who are obese, offers new insights into interpersonal relationships that can provide a foundation for more effective care of the obese population.

Adaptation, Psychological↗
PubMed2004

The facial nerve in the presence of a head and neck neoplasm: assessment and outcome after surgical management.

PURPOSE OF REVIEW: The face is the mirror of personality. Facial expression is the most important part of verbal and nonverbal communication. Patients with head and neck neoplasm and facial palsy are more stigmatized by the latter than by the tumor itself. Facial nerve reconstruction in such a patient is a great challenge. This review gives an overview of the assessment of facial palsy, surgical reconstruction, and postoperative treatment. RECENT FINDINGS: MRI, CT, and electromyography are indispensable tools in the assessment of preoperative facial palsy in patients with head and neck neoplasm. When part of the facial nerve has to be sacrificed during surgery, the best functional results are achieved with direct facial nerve suture, interposition graft, or by a hypoglossal-facial nerve interposition jump anastomosis. The latter is the best choice when the reanimation is planned between 6 months and 2 years after tumor surgery. In any case, the eye is best rehabilitated with upper lid loading. Temporalis muscle transposition gives fast and good results for the restoration of the corner of the mouth after radical surgery. Reanimation by free muscle transfer for head and neck cancer patients is rarely indicated. Botulinum toxin treatment is an excellent postoperative aid for refining the result; the optimal modality of postoperative physiotherapy is still unclear. SUMMARY: Surgical reanimation of the face in head and neck patients has reached a high standard. Strategies to decrease misdirected reinnervation after nerve suture have to be established in clinical practice for further improvement of facial rehabilitation.

Anastomosis, Surgical↗
PubMed1998

Operation Red Box: a pilot project of needle and syringe drop boxes for injection drug users in East Baltimore.

We assessed the acceptability and the use of a community-based needle and syringe disposal project designed to serve injection drug users. In June 1996, three surplus U.S. mail collection boxes were painted red and used as syringe and needle drop boxes in locations with high drug use in East Baltimore. Acceptance of the drop boxes was measured by focus groups of residents, drug users, and police, held before and after project implementation. Use was measured by weekly counts of needles recovered from the red boxes. A sample of all deposited needles was randomly chosen for needle washing and subsequent HIV antibody testing. Community impact was measured by systematic surveys of needles discarded on public sidewalks, in areas with and areas without drop boxes. Before implementation, members of focus groups expressed concerns that drop boxes could convey mixed messages to youth (e.g., seeming to condone drug use), might result in increased loitering, and could further community stigmatization. After project implementation, all focus groups expressed support of project expansion. In the first 10 months, 2971 needles were collected. Of 156 needles tested, 10.9% were positive for HIV antibody. Needle counts on the street showed no significant change in red box areas compared with control areas. In this pilot project, red boxes were accepted by the community and drug users. Police officers also used the boxes to dispose of confiscated needles. Although limited in the number of drop boxes and follow-up time, this pilot project shows promise as a community-based method of safe needle disposal.

Adolescent↗
PubMed2005

Emergency staff reactions to suicidal and self-harming patients.

Staff in the emergency departments of hospitals are reported as being negative or ambivalent toward suicidal or self-harming individuals. According to the literature, these patients are subjected to stigmatization and lack of empathy. This phenomenon has been linked to a decreased quality of care offered to these individuals and to missing an important opportunity to prevent further suicidal behavior or repetition of deliberate self-harm. Also, protocols, proper guidelines and education for the emergency staff call for a revision and an implementation. In this paper, evidence suggesting staff attitudes toward suicidal and self-harming patients is reviewed. An overview of related issues such as clinical judgment, the use of scales and nurses' role is also included in this report.

Attitude of Health Personnel↗
PubMedDate not supplied

Gender verification of female athletes.

The International Olympic Committee (IOC) officially mandated gender verification for female athletes beginning in 1968 and continuing through 1998. The rationale was to prevent masquerading males and women with "unfair, male-like" physical advantage from competing in female-only events. Visual observation and gynecological examination had been tried on a trial basis for two years at some competitions leading up to the 1968 Olympic Games, but these invasive and demeaning processes were jettisoned in favor of laboratory-based genetic tests. Sex chromatin and more recently DNA analyses for Y-specific male material were then required of all female athletes immediately preceding IOC-sanctioned sporting events, and many other international and national competitions following the IOC model. On-site gender verification has since been found to be highly discriminatory, and the cause of emotional trauma and social stigmatization for many females with problems of intersex who have been screened out from competition. Despite compelling evidence for the lack of scientific merit for chromosome-based screening for gender, as well as its functional and ethical inconsistencies, the IOC persisted in its policy for 30 years. The coauthors of this manuscript have worked with some success to rescind this policy through educating athletes and sports governors regarding the psychological and physical nature of sexual differentiation, and the inequities of genetic sex testing. In 1990, the International Amateur Athletics Federation (IAAF) called for abandonment of required genetic screening of women athletes, and by 1992 had adopted a fairer, medically justifiable model for preventing only male "impostors" in international track and field. At the recent recommendation of the IOC Athletes Commission, the Executive Board of the IOC has finally recognized the medical and functional inconsistencies and undue costs of chromosome-based methods. In 1999, the IOC ratified the abandonment of on-site genetic screening of females at the next Olympic Games in Australia. This article reviews the history and rationales for fairness in female-only sports that have led to the rise and fall of on-site, chromosome-based gender verification at international sporting events.

Chromatin↗
PubMed2001

Willingness to volunteer in future preventive HIV vaccine trials: issues and perspectives from three U.S. communities.

UNLABELLED: This study examined perceived risks, benefits, and desired information related to willingness to volunteer in preventive HIV vaccine trials. SAMPLE: Purposive sampling was used to select 90 participants among injecting drug users (Philadelphia, PA, U.S.A.); gay men (San Francisco, CA, U.S.A.); and black Americans (Durham, NC, U.S.A.). METHODS: A qualitative interview guide elicited perceived benefits, risks, and desired information relating to trial participation. Themes were developed from the transcribed texts and from freelists. RESULTS: Stated willingness to volunteer in a preventive HIV vaccine trial was similar across the three communities. Eight perceived benefits were reported, including self-benefits, altruism, and stopping the spread of AIDS. Seven perceived risks were reported, including negative side effects and vaccine safety issues, contracting HIV from the vaccine, and social stigmatization. Participants voiced the desire for eight types of information about issues relating to trust and confidentiality in the research process, health complications and later assistance, and vaccine trial methodology. CONCLUSIONS: In this study, many benefits as well as risks of preventive HIV vaccine trial participation were cited. Scientists conducting preventive HIV vaccine trials need to address community perceptions of risks and provide information about the research if trial enrollment is to be diverse and successful.

AIDS Vaccines↗
PubMed2005

Evaluating programs to prevent mother-to-child HIV transmission in two large Bangkok hospitals, 1999-2001.

The 2 largest maternity hospitals in Bangkok implemented comprehensive programs to prevent mother-to-child HIV transmission in 1998. We conducted a cross-sectional survey of post-partum HIV-infected women in 1999 through 2001 to evaluate these programs. Women were given structured interviews at 0 to 3 days, 1 month, and 2 months postpartum. Medical records of women and their newborns were reviewed. Of 488 enrolled women, 443 (91%) had antenatal care: 391 (88%) at study hospitals and 52 (12%) elsewhere. The HIV diagnosis was first known before pregnancy for 61 (13%) women, during pregnancy for 357 (73%) women, during labor for 22 (5%) women, and shortly after delivery for 48 (10%) women. Antenatal zidovudine (ZDV) was used by 347 (71%) women, and intrapartum ZDV was used by 372 (76%) women. Twelve (55%) of the 22 women who first learned of their HIV infection during labor took intrapartum ZDV. All 495 newborn infants started prophylactic ZDV; the first dose was given within 12 hours for 491 (99%) children. Ten (2%) children were breast-fed at least once by their mother, and 10 (2%) were breast-fed at least once by someone else. Although uptake of services was high, inconsistent antenatal care, fear of stigmatization, and difficulty in disclosing HIV status prevented some women from using services.

Anti-HIV Agents↗
PubMed2006

Consumer and family experiences in the emergency department following a suicide attempt.

OBJECTIVE: To understand the separate experiences of consumers (patients) and family members in the Emergency Department (ED) following a suicide attempt. METHODS: Separate anonymous surveys were created for two groups: 1) consumers (n = 465) who had made a suicide attempt and been to the ED, and 2) others (referred to here as family members; n = 254) who had a close friend or relative treated in an ED due to suicidal behavior. Surveys were available on the National Alliance on Mental Illness (NAMI) website (www.nami.org) for 2 months. RESULTS: Almost half of consumers were accompanied by a family member to the ED following their suicide attempt. Over half of consumers and family members felt that staff treated them with respect and addressed ethnic and cultural issues appropriately. However, fewer than 40% of consumers felt that staff listened to them, described the nature of treatments to them, or took their injury seriously. Family members were more likely than consumers to feel heard or to receive information about treatment. More than half of consumers and almost a third of family members felt directly punished or stigmatized by staff. Consumers and family members also reported negative experiences involving a perception of unprofessional staff behavior, feeling the suicide attempt was not taken seriously, and long wait times. CONCLUSIONS: Individuals who visited the NAMI website reported a range of negative experiences in EDs following visits for suicide attempts. The effects of these experiences on retention in care and subsequent self-injurious behavior are largely unexplored. A greater understanding of these effects may inform development of interventions to increase the satisfaction of consumers and their families and friends and improve outcomes that result from emergency care of suicidal patients and their families.

Adolescent↗
PubMed2003

G x E: a NIAAA workshop on gene-environment interactions.

The National Institute on Alcohol Abuse and Alcoholism (NIAAA) sponsored a May 2002 workshop on gene-environment interaction (G x E) research to identify potential roadblocks to further research and to propose solutions to those roadblocks, to optimize investigative opportunities and multidisciplinary or multi-institution collaborations, and to explore ways that NIAAA can facilitate G x E studies. Sessions included panels on animal models; phenotypes; genetic findings in humans; study designs and analytical methods; and assessment of environmental risk. Key among the identified challenges to progress in G x E research were issues of study design and sampling strategies; logistic and methodological costs and constraints; availability and understanding of data analysis techniques; potential stigmatization of study populations; and organizational/bureaucratic structures that are inadequate to address the unique needs of large-scale, multicenter, longitudinal projects. Participants proposed a series of recommendations to address these issues. Session coordinators included: Gayle Boyd, Kendall Bryant, Page Chiapella, Vivian Faden, David Goldman, and Antonio Noronha. Session participants included: Laura Almasy, Henri Begleiter, Raul Caetano, Bruce Dudek, Mary Dufour, Cindy Ehlers, Mary-Anne Enoch, Joel Gelernter, David Goldman, Bridget Grant, Lorraine Gunzerath, Deborah Hasin, Andrew Heath, Victor Hesselbrock, J. Dee Higley, Shirley Hill, Kerry Jang, Raynard S. Kington, Rick Kittles, George Koob, Kenneth Leonard, Ting-Kai Li, Jeffrey Long, William McBride, Matthew McGue, Kathleen Merikangas, Tamara Phillips, Bernice Porjesz, Carol Prescott, Theodore Reich, John Rice, Richard Rose, Charmaine Royal, Arnold Sameroff, Marc Schuckit, Kenneth Sher, Renee Sieving, Robert Taylor, Michael Windle, and Robert Zucker.

Alcoholism↗
PubMed2006

A flexible item to screen for depression in inner-city minorities during palliative care symptom assessment.

OBJECTIVE: There is inconsistent evidence for the validity of a single item to screen depression. In inner-city minority populations, the "yes/no" forced-response option may encourage bias, especially in elders and men, who view depression as stigmatizing or the healthcare system as untrustworthy. In contrast, an open-choice format with a category for ambivalent and missing responses could be acceptable if administered during the legitimized context of a physical symptom assessment. METHOD: Retrospective data were analyzed from 146 black and Latino inner-city patients receiving palliative care for various physical conditions. Bivariate analyses and ordinal regressions are based on the most recent comprehensive patient assessment conducted by a black female nurse and a bilingual Latina social worker. RESULTS: The depression item (no, unknown, yes) predicts pain and symptom attitude, which is more "hopeful" in older men with unknown depression status than in younger and older women with unknown depression status or no depression. CONCLUSIONS: The more "hopeful" pain and symptom attitudes by older men in the unknown category for depression suggest that depression, apathy, and resignation in older minority men may be hidden from clinicians in the absence of the open-choice depression item.

Adult↗
PubMed2005

Risk perception and impact of Severe Acute Respiratory Syndrome (SARS) on work and personal lives of healthcare workers in Singapore: what can we learn?

INTRODUCTION: Healthcare workers (HCWs) were at the frontline during the battle against Severe Acute Respiratory Syndrome (SARS). Understanding their fears and anxieties may hold lessons for handling future outbreaks, including acts of bioterrorism. METHOD: We measured risk perception and impact on personal and work life of 15,025 HCWs from 9 major healthcare institutions during the SARS epidemic in Singapore using a self-administered questionnaire and Impact of Events Scale and analyzed the results with bivariate and multivariate statistics. RESULTS: From 10,511 valid questionnaires (70% response), we found that although the majority (76%) perceived a great personal risk of falling ill with SARS, they (69.5%) also accepted the risk as part of their job. Clinical staff (doctors and nurses), staff in daily contact with SARS patients, and staff from SARS-affected institutions expressed significantly higher levels of anxiety. More than half reported increased work stress (56%) and work load (53%). Many experienced social stigmatization (49%) and ostracism by family members (31%), but most (77%) felt appreciated by society. Most felt that the personal protective measures implemented were effective (96%) and that the institutional policies and protocols were clear (93%) and timely (90%). CONCLUSION: During epidemics, healthcare institutions have a duty to protect HCWs and help them cope with their personal fears and the very stressful work situation. Singapore's experience shows that simple protective measures based on sound epidemiological principles, when implemented in a timely manner, go a long way to reassure HCWs.

Adaptation, Psychological↗
PubMed2003

Sexually transmitted disease prevalence and characteristics of market vendors in eastern China.

BACKGROUND AND OBJECTIVES: Sexually transmitted diseases (STDs) have soared in China. To address the impact, we studied market stall vendors in eastern China. GOAL: The goal was to determine STD prevalence and predictors. STUDY DESIGN: A total of 1536 randomly selected market stall vendors were interviewed and tested for STDs. RESULTS: The prevalence of any STD was 20.1% among those reporting sexual intercourse and 5.5% among those reporting never having sexual intercourse. Among those reporting sexual intercourse, chlamydia was most common (9.4%), followed by herpes (9.3%). A total of 4.5% of those reporting never having sexual intercourse had herpes infection, but none had chlamydia. Prevalence of all STDs was higher among females, and those with low education and multiple partners. The pharmacy was the major source of health care (48.8%). CONCLUSION: Generalizing from the results, targeting only STD clinic patients and persons reporting multiple partners for intervention will exclude a high proportion of those with STDs. More effective, less stigmatized sources of STD treatment should be developed.

Adult↗
PubMed2006

The cost-effectiveness of an outreach clinical model in the management and prevention of gonorrhea and chlamydia among Chinese female sex workers in Hong Kong.

BACKGROUND: Social marginalization and stigmatization in usual medical care setting may refrain female sex workers (FSWs) from seeking usual medical care for sexually transmitted infections in Hong Kong. GOAL: To evaluate the cost-effectiveness of using an outreach approach for treatment and prevention of gonorrhea and chlamydia among FSWs. STUDY DESIGN: A decision tree was designed to simulate the outcomes of 2 alternatives: (1) outreach service providing treatment of gonorrhea and chlamydia and counseling to FSWs (outreach arm) and (2) no outreach service (control arm). Five tiers of outcomes were estimated for each study arm: (1) total direct medical cost, (2) number of FSWs infected with gonorrhea, (3) number of new cases of gonorrhea in clients transmitted by FSWs, (4) number of FSWs infected with chlamydia, and (5) number of new cases of chlamydia in clients transmitted by FSWs. Clinical inputs were estimated from literature, and cost analysis was conducted from the perspective of a public health organization. RESULTS: Compared to the control group, the marginal savings per new case of infection averted (marginal cost divided by marginal cases of infection) of the outreach group were $10,988 (US dollars) per case of gonorrhea averted in FSWs, $685 per case of gonorrhea averted in clients, $9643 per case of chlamydia averted in FSWs, and $220 per case of chlamydia averted in clients ($1=7.8 Hong Kong dollars). CONCLUSIONS: An outreach clinic is potentially less costly and more effective in preventing transmission of gonorrhea and chlamydia between FSWs and their clients in Hong Kong.

Chlamydia Infections↗