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[Erythropoietic protoporphyria: coping with the disease from the biopsychosocial viewpoint].

Twelve patients suffering from erythropoietic protoporphyria (EPP) were interviewed about the biopsychosocial aspects of their disease. Painful cutaneous symptoms, anxiety and social stigmatization weight the patients down. Nevertheless, most suffers of this disease do not use all of the resources medical care could provide. Their strategies for coping with this chronic disease include unconscious defense mechanisms and a coping behavior that is largely conscious. The coping strategies are illustrated by a model. A plea is made for a holistic, biopsychosocial treatment plan for these sufferers.

Adaptation, Psychological↗

[Psychologically conspicuous children in kindergarten: on the consultation and education of teachers].

Children's conspicuous behaviour in the kindergarten can be caused by many factors. To initiate necessary help or to protect the child from stigmatization, the following range of possible influences should be examined: circumstances of the kindergarten, relationship between kindergarten-teacher and the child, way of life and habits of the entire family, and organic functioning of the child. Kindergarten-teachers need competent counseling to improve the curative and compensatory possibilities of the kindergarten.

Child↗

[Social acceptability of screening for HIV seropositivity in pregnant women. An inquiry in the Paris region].

Current debate about screening strategies for HIV during pregnancy is not limited to clinical and epidemiologic arguments; ethical and social concerns about the risk of stigmatization against HIV carriers are also taken into account. Therefore, data on public perception of AIDS and attitudes toward preventive measures against the disease can be of interest. In December 1987, a survey was carried out, through personal interview, in a representative sample (900 individuals selected by the quota method) of the 10.5 million inhabitants 18 years of age and over, in the Paris region. 9.8% of the women declared having been tested for HIV, at least once, during 1987, and 20% of these tests were part of prenatal care. Mandatory screening for HIV among pregnant women is supported by 78.6% of the respondents while only 64% support screening during premarital examinations and a minority (37.8%) is in favour of mandatory screening for the whole population. 48.5% of respondents share the misperception that transmission from mother to fetus always happens, and 70% think that women who are HIV carriers should renounce pregnancy: willingness to support mandatory screening for pregnant women is significantly higher among individuals who share these two beliefs.

Adult↗

Culture, rehabilitation, and facial birth defects: international case studies.

Responses to birth defects are influenced by their cultural and social context. Two multicultural societies, Israel and Nigeria, are reviewed for attitudes toward birth defects. Israel is a developed society where cultural and national origin affect utilization of health services. Differences between Western Jews, Oriental Jews, and Arabs exist in their explanations of etiology and their attitudes toward rehabilitation and community participation. Nigeria is a developing nation with limited health resources. Facial birth defects are stigmatized, infanticide remains a practice, and attitudinal barriers to the development of rehabilitation resources exist. The economic, demographic, and spiritual causes of infanticide are reviewed historically. The persistence of infanticide, though illegal, is discussed relative to issues facing the response of Western medicine to seriously afflicted newborns as well as prenatal genetic diagnosis. The importance of culture as a variable in cleft lip and palate research is stressed.

Attitude to Health↗

Various health professions groups' beliefs about people with arthritis.

This study was conducted among physical therapy students, nursing students, and interns and residents to compare beliefs about people with arthritis among these groups; compare the groups' beliefs about people with arthritis to their beliefs about people with five other handicapping conditions; and explore associations of the groups' beliefs about people with arthritis with their age, sex, and personal experience with the condition. For purposes of comparison with the health professions study groups, undergraduate students in an interpersonal communications class were also surveyed. Respondents answered a ten-item questionnaire for each of the six handicapping conditions. Through factor analysis, the ten items were reduced to two factors--one dealing with the emotionality and sensitivity of people with a handicapping condition and the other concerning the extent to which people with a handicapping condition are similar to "normal" people. Although beliefs about people with arthritis were not profoundly negative, such people were clearly viewed as being different from non-handicapped people. To the extent that negative, stereotypic beliefs held by health professionals may result in the stigmatization of people with handicapping conditions, such beliefs may ultimately have an adverse effect on the patient's response to treatment.

Adult↗

Child maltreatment and its victims. A comparison of physical and sexual abuse.

Although physical and sexual abuse are separate and distinct types of victimization, their impact on children is quite similar. Both of these forms of maltreatment involve the exploitation or misuse of a child by a parent or caretaker in the context of a pathologic family system. Physical and sexual abuse constitute an acute traumatic event for the child, generating phobic responses and anxiety-related symptoms including post-traumatic stress disorder. The long-term traumatic elements stemming from the chronic stigmatization and scapegoating contribute to problems of depression and low self-esteem and distortions in character formation. Betrayal by a primary caretaker leads to mistrust of others and difficulties with object relationships. Perhaps the most striking similarity between physical and sexual abuse of children is the tendency of the children to re-enact and recreate their victimization with others, leading to a transmission of violence in the next generation. Like their parents who were frequently victimized during childhood, they repeat and perpetuate an "aggressor-victim" interaction in their subsequent relationships. Both physical and sexual abuse are embedded in a deviant family structure, which adds to the psychopathology of the children. The contrast between physical and sexual abuse can be demonstrated by their specific impact on aggression and sexuality, respectively. The physically abused child has difficulty in experiencing and modulating aggressive impulses, whereas the victim of incest is often impaired in his ability to experience and integrate sexual feelings. The physically abused child is also at greater risk for cognitive and CNS impairment. Intervention with the abusing parents is the first step in protecting the children from further damage, but treatment of the child victims is necessary not only to diminish their psychopathology and emotional distress, but to prevent the cycle of violence in the next generation.

Adolescent↗

Urinary incontinence.

Incontinence has about a 15 percent prevalence among elderly women. Some of the factors associated with incontinence are psychosocial implications of stigmatization, the decreased quality of life, and the economic considerations of nursing home costs. There are numerous, often misdiagnosed, reversible causes of incontinence, and many of the problems associated with aging may be alleviated if incontinence is treated symptomatically and controlled.

Aging↗

Alcoholic women in treatment: the question of stigma and age.

Both alcoholic women in treatment and a matched group of non-alcoholic women feel that social attitudes are more negative towards female intoxication and problem drinking than towards male intoxication and their drinking problems. Alcoholic women report significantly more negative attitudes, both social and personal, than do the non-alcoholic control women. The older group of alcoholic women are consistently harsher than the younger in their judgments, both of social attitudes and in expression of their own opinions. The less negative attitude of younger women alcoholics may reflect more liberal attitudes of younger persons but there is a curious juxtaposition in that younger alcoholic women report more family and social rejection than do older alcoholic women. There is dissonance in younger alcoholic women's report of less negative attitudes and more experienced rejection and stigmatization. Perhaps more rejecting social attitudes towards younger alcoholic women are related to their greater likelihood of public rather than private drinking. When the total sample (438 women, alcoholic and non-alcoholic) is compared in terms of positive family history versus negative family history, those with positive histories are more likely to agree with disapproving statements about women's problem drinking. Significantly more women with positive histories believe that social attitudes are more disapproving of women alcoholics then men, and they believe, to a significantly greater extent than those without such histories, that the effects of maternal alcoholism are worse than those of paternal alcoholism.

Age Factors↗

Epidermolysis bullosa misdiagnosed as child abuse. A report of 3 cases.

Three cases of epidermolysis bullosa are reported; the typical skin lesions were misdiagnosed as non-accidental injury to the children. Awareness of the manifestations of this uncommon genodermatosis, as well as the wearing of identifying Medic Alert discs, should prevent this inappropriate diagnostic stigmatization.

Child↗

[Family therapy in forensic psychiatry].

Patients in forensic psychiatry and their relatives are both doubly stigmatized by the labels psychiatric disturbance and delinquency. In an expert-guided group for relatives of forensic patients at Karl-Bonhoeffer-Psychiatric Hospital Berlin choice of topic and frequency of attendance indicated enormous guilty feelings. Defense against these guilty feelings could only be kept up by great effort. Support of relatives in forensic psychiatry seems advisable also for the rehabilitation of the patients themselves and prevention of relapse.

Commitment of Persons with Psychiatric Disorders↗

Optional early retirement as an alternative to involuntary layoffs: some observations on the Israeli experience.

The use of optional early retirement (OER) in Israel is discussed in the context of the tendency to consider forms of voluntary work-force reductions as an alternative to dismissals and layoffs during organizational retrenchment. The pros and cons of OER are assessed from both the organizational and the individual points of view. Although much more palatable than involuntary dismissals, attention is called to the hidden costs of OER in terms of organizational effectiveness, the stigmatizing use of age as a selection criterion, and the unintended effects on individual well-being.

Attitude↗

Epilepsy and education: the pediatrician's expanding role.

School systems, teachers, health systems, and physicians are striving to assist students to reach their full potential. Physicians have an understanding of seizures and medications that should be shared with teachers. In turn, teachers know what parts of students' learning seem to be affected by their epilepsy; they also work with students every day and this gives them a unique perspective of changes in the patient's status. Epilepsy can profoundly affect the student-patient, the school, and the home. Pediatricians are in the unique position to share medical information with teachers and parents. By sharing this information, physicians encourage collaboration. Increased collaboration, in turn, helps to reduce the myths and fears surrounding epilepsy. It provides teachers with the information they use to plan instructional programs, and it improves physicians' decisions regarding diagnosis and treatment. Physician/teacher collaboration is generally advocated for patients-students in the "devastated" and the "compromised" groups. Collaboration is not necessary in patients without problems and it is probably preferable not to risk stigmatizing otherwise intact children by attaching the label "epilepsy" to them. When collaboration is indicated, teachers will need some way of organizing information about students' seizure, educational, medical, and psychosocial background. The appendix contains a list of questions grouped according to these categories. If teachers can answer these questions they will be well on the way to resolving the problems confronting the student with epilepsy. It is hoped that physicians will be available and willing to assist teachers and that teachers will seek their assistance.

Child↗

Human behavioural research applied to the leprosy control programme of Sarawak, Malaysia.

In 1984, in Sarawak, there were a total of 1,099 recorded cases of leprosy for a population of 1.3 million. However, for each case recorded, it is estimated that two others remain undiagnosed as a consequence of the stigmatization associated with leprosy. For the five year period, 1979-1983, an average of 29 new cases were detected each year of which 8.6 (30%) were deformed due to the late stages at which it was being reported. To increase the case-finding rate, human behavioural research was applied to the leprosy control programme so as to develop culture-specific health education packages aimed at self diagnosis and self referral in order to detect the large pool of undiagnosed cases hidden behind the veil of aversion, fear and ignorance. This was achieved through anthropological studies to identify how the various major ethnic groups perceived leprosy and their attitudes towards leprosy. Taking into account these findings, health education packages aimed at adults as well as children were developed for the Chinese as well as the non-Chinese, and consisted of newspaper articles, cartoon tape-slides, cartoon story books and posters.

Attitude to Health↗

Psycho-social and environmental factors in triad model for the management of control programme: focus on leprosy.

The study addresses the question of how the qualitative aspect of the interaction between the people involved in the leprosy control programme affects the process of patients (P), service providers (SP) and satellite informants (SI) composed of community leaders, in the delivery of basic leprosy control services in two high leprosy endemic villages in La Union province, the Philippines. The interaction between P, SP and SI as an independent variable is imagined to be linked in a form of a triad, influenced by psycho-social and environmental variables. Data was gathered by conventional methods as interviews, historical research and use of rating scales as well as non-conventional methods as PUP, a locally developed standardized instrument which measures variables that determine a Filipino's adjustment to social situations, and photographic documentation. Statistical analysis was made on the independent variable and the dependent variable - an improved Leprosy Control Programme. It was observed that the stigmatization of Hansenites had deep historical roots with the policy of colonial administrations to isolate and segregate Hansenites. This stigma remains to the present and was observed to exist even among service providers: Low knowledge levels of patients on the causes of the disease on the one hand, and service providers on the cure, particularly on the use of Multiple Drug Therapy. The reorganization scheme of the Health Ministry also resulted in the slow down of leprosy control activities thereby affecting delivery of services. Individual personality traits and other psycho-social factors of P, SP and SI further contributed to the lag in service delivery.(ABSTRACT TRUNCATED AT 250 WORDS)

Attitude of Health Personnel↗

Quality care for ill children: AIDS-specialized foster family homes.

Children with AIDS and related complexes present a new and serious challenge to the child welfare field's foster care system. At this stage of the world's knowledge of AIDS and treatment capacity for its victims, the children are stigmatized as plague bearers, their viability is unknown, and few, if any, will ever have a home to return to. This article describes a special foster care demonstration in behalf of AIDS infants.

Acquired Immunodeficiency Syndrome↗

Ethical concerns in occupational screening programs.

Preventive and anticipatory programs for identifying workers at higher-than-normal risk for occupational injury and/or disease can now draw on an expanding net of sophisticated diagnostic tests. New genetic screening tests may use reagents developed through recombinant DNA technologies, including cDNA probes for genetic variants such as HLA B27 associated with late-appearing disability. Assessments of the readiness of these technologies to be incorporated into standard occupational policy turn on their predictive value, applications, and the locus of control of the data which they generate. The question of responsibility for health protection and obligations accruing to those who uncover genetically fixed risk status has major ethical implications. Issues of potential stigmatization, discrimination, and protection of equal employment opportunity must be resolved before these tests are put into practice. The possible use of genetic testing to assure minimal risk and its equitable distribution among workers is highlighted as a possible benefit of this new applied technology.

Civil Rights↗

[Behavioral medicine aspects of juvenile diabetes].

Childhood or insulin-dependent diabetes is a life-long illness, placing complex and daily demands on the patient and the family. Some studies were carried out in order to investigate the relationship between health status, behavioral and psychological variables. The Hemoglobin A1 was used to index glycemic control. A newly developed diabetes knowledge test and a questionnaire on diabetic related beliefs were administered. The results indicate that diabetic control improves with age. General knowledge of diabetes increases with age, but relates not to diabetic control. But considering age and the particular subtests of knowledge as predictors 59.44% of the variance in diabetic control can be estimated. Perceived barriers to implementing self-care and feelings of disruptiveness culminate in the age of 12 to 13 years. Feelings of stigmatization and the affection by the disease loose weight as disturbing factors with increasing age and knowledge. Increased attention to the child's cognitive developmental level is suggested and methods for improving the effectiveness of patient intervention programs are discussed.

Adolescent↗

The health of rectal cancer patients in the community.

Surviving rectal cancer patients living in five health districts were identified through cancer registrations. Four hundred and twenty (91%) were interviewed at home by health visitors to assess their physical, social and psychological health. In most respects, the health of rectal cancer patients overall was similar to that of the general population of the same age, sex and social circumstances. However, those with a colostomy (63%) were more likely to be severely depressed, socially isolated and stigmatized. They also suffered more from physical problems, particularly urinary symptoms, flatus and offensive bowel motions. The pressure of a colostomy was associated with reduced sexual capacity, though not with lack of sexual interest. The results confirm the high psychological and social costs of a permanent colostomy.

Adult↗