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PubMed2000

A woman with leprosy is in double jeopardy.

The double jeopardy associated with female leprosy patients is the central theme underpinning this essay. It constitutes a combination of biological factors unique to women and culturally defined bias, resulting in more stigmatization and isolation for women. Having examined the female immunological response and biological roles, the essay continues by focusing on the gender-culture perspective of leprosy. It draws upon an historical analysis of the experiences of Indian and African women to illustrate the ways in which gender roles impact upon health education and the utilization of health care services. Concluding comments suggest strategies that might improve female leprosy patient status, and views towards future research.

Africa↗
PubMedDate not supplied

Cultural perspectives on diabetes in an Appalachian population.

OBJECTIVE: To gain an understanding of cultural and socioeconomic forces that shape beliefs about diabetes and its self-management. METHODS: Thirteen focus groups were conducted in community settings in West Virginia using a semistructured interview guide. RESULTS: Diabetes is perceived as a relatively new disease. Self-management behaviors reflect a mixture of cultural beliefs and limited resources. Moral overtones stigmatize diabetes. CONCLUSIONS: Understanding patients' illness experiences from within their cultural framework is important for successful community programming regarding chronic disease management.

Appalachian Region↗
PubMed1985

The psychosocial and neuropsychiatric sequelae of the acquired immunodeficiency syndrome and related disorders.

The acquired immunodeficiency syndrome (AIDS) and its related conditions are a public health problem of unprecedented proportions due to the debilitating and fatal nature of the disease, the sociocultural implications related to contagion, and its initial appearance in certain socially stigmatized groups. The ability of patients to tolerate the consequences of the disease depends on their psychological ability to cope based on emotional strength and the availability of social support. The psychological and social impact of AIDS may result in psychiatric symptoms similar to those seen in other life-threatening diseases, including anxiety, depression, and delirium. Neurologic complications are frequent, the commonest being an encephalopathy and dementia that is poorly understood. It is difficult in the early stages of AIDS to separate reactive depression and psychomotor retardation from symptoms associated with central nervous system complications. Guidelines are needed to manage the psychological problems posed by AIDS and its related conditions.

Acquired Immunodeficiency Syndrome↗
PubMed1998

Rethinking nonadherence: historical perspectives on triple-drug therapy for HIV disease.

The advent of triple-drug therapy for HIV disease has raised the concern that disadvantaged patients with multiple social problems may be nonadherent to treatment. Fearing that partial adherence will lead to drug resistance, some clinicians are withholding these powerful new drugs from such patients. The historical record demonstrates that labeling patients as nonadherent may be both stigmatizing and inaccurate. Since 1900, such adjectives as ignorant, vicious, and recalcitrant have been used to describe patients who do not follow medical advice. Less judgmental terms, such as nonadherent and noncompliant, are now used, but these terms still imply that patients should obey physician-imposed regimens. Studies of nonadherence have consistently shown that the problem is widespread among all persons and cannot reliably be predicted on the basis of patient characteristics. This paper argues that physicians should deemphasize the standard approach of predicting and correcting nonadherent behavior in certain patients. Rather, clinicians should encourage all HIV-positive patients to devise individualized treatment plans that can facilitate reliable ingestion of medication. Although the potential development of resistance to triple-drug therapy remains an important public health issue, concern about this possibility must be balanced with respect for patients' rights. Encouraging the active participation of HIV-positive persons in their own treatment will help avoid judgmental and inaccurate assessments of patient behavior and may help patients take medications more successfully.

Anti-HIV Agents↗
PubMed2003

"Genetic exceptionalism" in medicine: clarifying the differences between genetic and nongenetic tests.

Predictive genetic tests are now available for assessing susceptibility to a variety of conditions, including breast and colon cancer, hemochromatosis, and Alzheimer and Huntington disease. Much controversy surrounds the application of these tests, stemming from their similarities to and differences from other tests commonly used in asymptomatic persons. Some have argued that genetic tests are unique and therefore justify special consideration with regard to informed consent and privacy. This paper examines the arguments for such "genetic exceptionalism" and concludes that no clear, significant distinctions between genetic and nongenetic tests justify a different approach to testing by clinicians. Nevertheless, with many genetic tests, the results may cause stigmatization, family discord, and psychological distress. Regardless of whether a test is genetic, when this combination of characteristics is present and when health care providers are not specifically trained to interpret results, testing should be performed with particular caution and the highest standards of informed consent and privacy protection should be applied.

Ethics, Medical↗
PubMed2005

Youth experiences of living with mental health problems: emergence, loss, adaptation and recovery (ELAR).

Current understanding of youth aged 15-24 experiencing mental health problems is limited. Through a qualitative analysis of the subjective experiences of 7 male and 6 female youths, 4 core categories emerged as stages that described the participants' process of mental illness: emergence, loss, adaptation, and recovery. Results showed that youth experiencing mental health problems felt stigmatized and labelled, and experienced multiple losses of identity, family, career choices, and educational and social standing. Participants reported that having mental health problems disrupted their transition from adolescence to young adulthood; however, these data reveal how youth adapt and recover. Implications of the findings in this study will be useful in identifying youth-focused interventions that may help professionals assist youth more effectively in their recovery process.

Adaptation, Psychological↗
PubMed1998

[Nurses' knowledge of alcohol-related problems and their treatment: a comparison of nurses in general hospital and alcoholism treatment units].

Nurses have the most contact with patients in the clinical settings, and they play an important role in the guidance and education of patients. Nurses' basic knowledge of alcohol-related problems greatly influences early discovery of and early intervention against alcohol-related problems in general units (GU). In a study undertaken mainly to understand the status of nurses' knowledge in GU, a survey was performed to compare the knowledge and attitude of nurses working in GU and those with working in units specializing in the treatment of alcoholism (AU). For reference, we used the results of separate surveys performed previously on the general population. The results showed that, compared with nurses in AU, nurses in GU (1) were more tolerant of drinking, but (2) were more stigmatic concerning alcoholism, and (3) had little knowledge concerning alcohol-related problems. Nurses in GU tended to have less knowledge about alcohol-related problems than the general population. Moreover, the knowledge of nurses in AU could not be considered sufficient. This study suggested the need for basic education concerning alcohol-related problems and their treatment aimed at nurses.

Adult↗
PubMed1999

[Epilepsy in adolescence. Need for multi-professional diagnosis and treatment].

Epilepsy is one of the most common neurological disorders in adolescence. In a period of life which can be a trying time for anyone, unpredictable and stigmatizing seizures may create considerable additional problems for vulnerable teenagers. In recognition of the many problems young people with epilepsy may be facing, a special ward for teenagers at the National Center for Epilepsy was established. At this ward the patients are offered a broadspectered, multidisciplinary diagnostic and therapeutic programme. Patients with psychogenic seizures represent a particular challenge and are discussed in more detail. During the stay, patients attend an "epilepsy school" with instruction and discussions on topics related to epilepsy. This teenager ward has so far been a success and may serve as a transition clinic from child to adult care.

Adolescent↗
PubMed1999

[The Law on (Re)integration of Disabled Persons].

In spite of the growing economy, with diminishing unemployment and increasing scarcity of manpower, many people with chronic health problems remain unemployed. To promote their participation in the labour progress, the Law on (Re)integration of Incapacitated Persons (REA) was enacted on 1 July 1998. This law provides a number of facilities for those classified as 'unable to work'; These are persons impaired by chronic health problems in participating in the labour process. The existing allowances have been liberalized and simplified considerably. Employers in certain cases can expect substantial subsidies. In addition, there are more facilities like vocational re-education and psychological and other training courses. The concept of 'incapability' is rather vague. Fortunately, the Law makes it immediately clear who may be regarded as incapable. In other cases, physicians employed by Factories Act organizations, employment policy offices and social insurance will have to take part in the evaluation. The new law has a few paradoxical starting points, those incapable for work are given hardly any voice and there is a clear risk of stigmatization. On the other hand, failure of the (re)integration of handicapped persons into the labour process may lead to further encroaching upon the welfare state.

Adult↗
PubMed1995

Stressors, needs, and resources: what AIDS home caregivers have to say.

Caregivers of persons with AIDS often face psychological, physical, economic, and social barriers to effective care. Community resources and support are inadequate. How can home care professionals help caregivers deal with the implications of caring for a friend or loved one who has this socially stigmatized disease?

Acquired Immunodeficiency Syndrome↗
PubMed1996

Searching for solutions: health concerns expressed in letters to an east African newspaper column.

This study examined health care questions from an unusual data set: 1252 unsolicited letters written over a three-year period to an advice column in an East African newspaper. Analysis of the letters was a non-intrusive method of ascertaining prevalent health questions and opinions. People wrote seeking information, advice, solutions, and reassurance about health problems. Emotions expressed in the letters ranged from hope to fear and frustration. The written format allowed questions which are generally too embarrassing or stigmatized to present in other public or interpersonal settings. More than half the total letters raised questions about sexual behaviour, sexually transmitted diseases, and HIV/AIDS. The letters present not only personal health concerns, but also expectations of health-care quality and reflections on the medical options presently available in Uganda. As a whole, the letters express dissatisfaction not only with the outcomes of health encounters, but with the process. Of the letter writers with specific physical complaints, more than one-third had already sought medical care and were dissatisfied with the results. The letters were seeking solutions, especially for alleviation of symptoms and discomfort. Almost equally prevalent was a plea for accurate and relevant health information; people not only want to feel better, but they also want to understand their own health.

Adolescent↗
PubMedDate not supplied

Strategies for managing health problems among homeless women: three case studies.

The purpose of this article is to illustrate through case examples how homeless women experience coexisting health problems, and how they may conceal these stigmatizing health problems from others, including health professionals and shelter staff. The article will also address how nurse case managers can interact with these women so that together they can develop strategies about how to manage these complex health problems.

Adult↗
PubMed1983

"I came here to die:" a look at the function of therapeutic recreation in nursing homes.

Generally the elderly are identified as a stigmatized subculture victimized by society's denial or avoidance of their physical problems, social needs and psychological issues. So much more the case for the nursing home resident, who is characterized as helpless, passive and socially insensible. The article questions the efficacy of recreational activities as they exist in the nursing home milieu today. Does therapeutic recreation take into account the physical, social and emotional needs of the nursing home resident? What is the basis for rationale in building therapeutic recreation programs? Where is the didactic emphasis in university programs designed to educate the recreational therapist? It is concluded that recreational activities become therapeutic only when they have evolved from a detailed knowledge of the problems germane to a given population.

Aged↗
PubMed1986

Justice, compassion needed in treating AIDS patients.

Caring for patients with AIDS presents an emotional and ethical challenge for care givers. Not only do AIDS patients have great medical needs but they also must cope with the attitudes of a society that has stigmatized them. Stigma complicates the health care decisions that must be made, since many patients with AIDS may not have a supportive family or friends to assist with care. In these situations the health care facility becomes the patient's home and health care workers become the patient's family. Care givers therefore have a unique opportunity to affirm the dignity and goodness of AIDS patients by assuring them confidentiality and treating them with compassion. When decisions about life-sustaining treatments must be made, the care giver's duty is to respect the patient's choice of treatment. Prolonging a patient's dying should not be considered an option if it is done only as a means of healing the family's grief; if patients cannot trust providers to honor their requests to discontinue treatments that become useless or inhumane, they may hesitate to seek helpful treatment. Although a voluntary approach to caring for patients with AIDS may be preferable, employees' resistance to caring for patients usually can be dispelled through education. If a mandatory approach to care is taken, the standards of participation should apply to all--including physicians, administrators, and managers.

Acquired Immunodeficiency Syndrome↗
PubMed1988

The hidden victims of AIDS: healthcare workers and families.

With the realization that acquired immune deficiency syndrome (AIDS) is an epidemic, the focus on prevention and treatment of the AIDS patients has intensified. However, there has been a lack of recognition of other potential victims. Specifically, little attention has been paid to the psychological impact of AIDS on healthcare workers who care for AIDS patients and on families of AIDS victims. In addition to confronting the premature dying of a young patient, both healthcare workers and families must confront their own conflicts regarding the stigmatizing nature of AIDS as it relates to the patient's sexuality or drug abuse. Failure to resolve these issues often serves as a major obstacle to the provision of effective medical care and prevents families from providing the essential emotional support that can help patients cope with their illness. Furthermore, failure to resolve family conflicts about the patient's life-style may significantly impair the grieving process and may lead to family disengagement and dissolution. The purpose of this paper is to review the literature on the impact of AIDS on healthcare workers and families, and to propose intervention strategies which will alleviate stress and facilitate appropriate psychological adaptation. "....this dreadful disease is not only killing young people in the prime of life and destroying their familial and social relationships. It is also damaging the bond between the care giver and the patient with AIDS as well."

Acquired Immunodeficiency Syndrome↗
PubMed1999

Mental illness and substance abuse: implications for women's health and health care access.

Individuals with serious mental illness (SMI) and/or alcohol and other drug (AOD) problems often have physical health concerns that are not appropriately treated and that interfere with effective management of SMI and/or AOD problems and contribute to the overall costs to society of these disorders. Although the literature has limitations, available evidence suggests that women with SMI and/or AOD problems have more numerous and severe health concerns than comparable men and that they receive less appropriate health care than men do. These greater problems relate directly to SMI or AOD use, or involve difficulties in complying with medical regimens, side effects of medications, or interactions of AOD use and SMI with other health conditions. Individuals' life situations can also increase their vulnerabilities and health risks. Health problems frequently are not detected by specialty or general practice health professionals, and thus get worse. Women with SMI and AOD disorders have less access to appropriate physical health care services--both within the AOD and SMI treatment systems and within health care settings. Recommendations for improved health care for highly stigmatized groups of women with multiple needs include stronger linkages between systems, increased training of health providers, and policy and program changes.

Community Mental Health Services↗
PubMed1999

[From tracheostomy to non-invasive mask ventilation: a study in children with congenital central hypoventilation syndrome].

BACKGROUND: Children with congenital central hypoventilation syndrome (CCHS) have to be ventilated during sleep due to respiratory insensitivity to CO2. This long-term mechanical ventilation sometimes requires a tracheostomy during infancy, leading to increased risk of infections and of tracheal problems, and later on to stigmatization and restrictions in social life. PATIENTS AND METHOD: We therefore evaluated non-invasive mask ventilation in 4 children between 6 and 15 years of age, who had been ventilated via tracheal canula since early infancy under polysomnographic control. RESULTS: Best results were obtained with standard face masks in connection with pressure controlled timed ventilation. In 1 child we used a volume-controlled ventilator. The lack of dyspnea in these patients can worsen the acceptance of a face mask, which is more uncomfortable than a tracheal cannula. In 2 children we waited with the definite closure of the tracheostomy due to pavor-like symptoms and laryngeal closure during sleep and problems in acceptance of the mask, respectively. In the other 2 children we could demonstrate effective non-invasive mask ventilation during temporary tracheal closure for several nights. Therefore the tracheostomy was definitely closed. Long-term follow-up with home monitoring showed effectiveness of non-invasive ventilation in these cases.

Adolescent↗
PubMed1999

[Lipoprotein profile of patients infected with HIV in Côte d'Ivoire].

Aids is a cachexysing disease which is striking Africa. Côte d'Ivoire with its 12% seroprevalence is paying a heavy tribute to this pandemia. The course of the disease is characterized by the occurrence of immunological and biochemical disorders. The aim of this study is to offer African practitioners, clinicians and biologists some biochimical parameters that would help them to follow up people infected with HIV. The authors determined the lipoprotein profile in 204 people (112 Aids patients, 61 HIV infected asymptomatics and 31 controls seronegative to HIV), of both sexes aged 17 to 70 years old. The results show a relatively high level of triglyceridemia, a decreased level of total cholesterol, apoproteins A1 and B and a hypergammaglobulinemia with concomitant and significant increase in the level of orosomucoide as a stigmate of inflammation. These data could help practitioners who lack CD4/CD8 count and viral load monitoring in the follow up of their AIDS patients.

Acquired Immunodeficiency Syndrome↗