Sexualidade e deficiência intelectual: narrativas de pais de adolescentes / Sexuality and intellectual handicap: parents' narratives

Pelo senso comum, adolescentes com deficiência intelectual têm a sexualidade exacerbada ou são assexuados. Para conhecer como vivenciam as manifestações sexuais de seus filhos, entrevistamos 14 pais de adolescentes com essa deficiência. A análise das narrativas obtidas foi baseada em autores da antropologia. Nelas, observaram-se os preconceitos e o desconhecimento sobre o tema, bem como a reprodução da ideologia de gênero da nossa sociedade. Nas narrativas dos pais de adolescentes do sexo masculino, a masturbação, a relação sexual e o medo de abuso sexual foram destaques, enquanto nas dos pais das adolescentes privilegiaram-se como tema as mudanças corporais e também o receio de que fossem abusadas sexualmente. A inadequação entre desenvolvimento físico e um comportamento sexual considerado socialmente impróprio também foi alvo de narrativas. Aponta-se a necessidade de ampliação do debate com os adolescentes, seus pais e diversos setores da sociedade para minimizar os preconceitos em relação à sexualidade das pessoas com deficiência intelectual, propiciando a garantia de seus direitos sexuais.

By common sense, adolescents with intellectual disabilities have a heightened sexuality or are asexual. To learn how they experience the sexual manifestations of their children, we interviewed 14 parents of adolescents with this deficiency. The analysis of the narratives obtained was based on authors of anthropology. In them, there were prejudices and ignorance on the subject, as well as playing the gender ideology of our society. In the narratives of parents of adolescent males, masturbation, sex and fear of sexual abuse were highlighted, while parents privileged themes such as bodily changes and also the fear that they were sexually abused. The mismatch between physical development and sexual behavior considered socially improper was also the target of narratives. The paper points up the need to expand the discussion with teens, their parents and various sectors of society to minimize biases regarding sexuality of people with intellectual disabilities, providing a guarantee of their sexual rights.

Eficacia protectora de la vacuna Heberbiovac HB® a diferentes dosis en niños impedidos físicos y mentales / Protective efficacy of Heberbiovac HB® at different dosage in physically and mentally-handicapped children

INTRODUCCION: los estudios de seguimiento de eficacia protectora en grupos de alto riesgo a la infección por el virus de la hepatitis B, inoculados con vacunas recombinantes contra la hepatitis B, son limitados, y la duración de la protección aún no está del todo definida en los vacunados contra esta enfermedad. OBJETIVOS: determinar la eficacia protectora de la vacuna Heberbiovac HB® a diferentes dosis en niños impedidos físicos y mentales, 14 años después de aplicado el esquema primario de vacunación. MÉTODOS: en 1991 se realizó un estudio de efectividad con la vacuna Heberbiovac HB® en 2 grupos de niños impedidos físicos y mentales (A= 10 µg y B= 5 µg). El estudio fue aprobado por los Comités de Ética Médica y Revisión del Instituto de Medicina Tropical "Pedro Kourí" y el Centro de Ingeniería Genética y Biotecnología de Ciudad de La Habana; se siguieron las Buenas Prácticas Clínicas vigentes en Cuba y los principios éticos de la Declaración de Helsinki. Se empleó el esquema de vacunación 0, 1 y 6 meses, fueron incluidos los niños que resultaron negativos al antígeno de superficie del virus de la hepatitis B y al anticuerpo contra el antígeno de superficie del virus de la hepatitis B. Los sujetos se estudiaron desde el punto de vista clínico y serológicamente, hasta 14 años después de aplicado el esquema de vacunación. RESULTADOS: 1 año después del comienzo de la vacunación la seroprotección fue de 100 por ciento en ambos grupos. A los 14 años de seguimiento, ningún sujeto resultó positivo al antígeno de superficie del virus de la hepatitis B ni padeció hepatitis B aguda, lo cual resultó en 100 por ciento de protección individual. CONCLUSIONES: el poder inmunogénico de la vacuna Heberbiovac HB® fue elevado y su eficacia protectora fue de 100 por ciento en los niños impedidos físicos y mentales, en el seguimiento clínico serológico realizado hasta 14 años después de la aplicación del esquema de vacunación, resultados obtenidos por primera vez en Cuba para esta vacuna.

INTRODUCTION: the protective efficacy follow-up studies in high risk groups for hepatitis B virus infection, which were inoculated with recombinant hepatitis B vaccines, are limited and the duration of protection is yet to be determined in those vaccinated people. OBJECTIVES: to determine the protective efficacy of Heberbiovac HB® vaccine at different dosage in physically and mentally-handicapped children after 14 years of the primary vaccination schedule. METHODS: in 1991, an effectiveness study of vaccine Heberbiovac HB® was conducted in 2 groups of physically and mentally-handicapped (A=10 µg y B= 5 µg). The study was approved by the Committees of Medical Ethics and Revision of "Pedro Kourí" Tropical Medicine Institute and of the Center of Genetic Engineering and Biotechnology of the City of Havana; good clinical practice were followed and the ethical principles of Helsinki Declaration were respected for. The vaccination schedule at 0, 1 and 6 months was used in which children negative to hepatitis B virus surface antigen and to hepatitis B virus surface antigen antibody were included. The subjects were studied from the clinical and serological viewpoints up to 14 years after the implementation of the aforementioned vaccine schedule. RESULTS: one year after the beginning of the vaccination, there was full seroprotection in both groups. After 14 years of follow-up, none of the subjects was positive to hepatitis B virus surface antigen, neither were they affected by acute hepatitis B, which meant 100 percent individual protection. CONCLUSIONS: the immunogenic power of Heberbiovac HB® vaccine was high and its protective efficacy was 100 percent in physically and mentally-handicapped children according to the results of the clinical and serological follow-up extending up to 14 years after the implementation of the primary vaccination schedule. These results are achieved for the first time for this kind of vaccine.

The Lived Experience of Mothers Mentally Handicapped Daughters Having Menarche at Puberty / 간호학회지

The purpose of this study is to understand the structure of mothers of mentally handicapped daughters' lived experience, to apprehend the connectedness of the structure of the experience with concept of Parse's human becoming theory, and to provide a foundation for nursing research and education. Data collection was conducted from October 1995 to April 1996. Research participants were eight mothers of mentally handicapped daughters whose ages ranged from 12 to 18 attending special schools located in either Inchon or Seoul. The researcher had interviews with them over their lived experience conducted tape recorded, and made an analysis according to Parse's "human becoming research methodology." The data were collected using the dialogical engagement process "I and You," the participant researcher and the participant subject. The data were analyzed using the extraction-synthesis and heuristic interpretation. The structural integration is illustrated in the following: 1) Realizing the mother's role of mentally handicapped daughters and admitting situation. 2) Concealing a part of their relationship with others is interpreted as revealing-concealing. 3) Their fight back voluntarily to improve the situation is interpreted as powering. The conceptual integration which emerged was the lived experience of mothers is powering through the revealing-concealing and connection-separating of valuing.

Experience of Mothers of Mentally Handicapped Children Having Menarche / 간호학회지

Various difficulties and inconvenience arise from having a mentally handicapped child in a family and these place many demands on mothers. There are few studies in Korea on these demands nor on what mothers go through with their mentally handicapped daughters' menarche and puberty. The purpose of the study was to examine the experiences of mothers of mentally handicapped daughters, as it relates to their daughters' menarche and the beginning of puberty. With in depth interviews, both in person and by telephone and participant observation the study used a qualitative research methodology to attempt to understand the experiences of these mothers. The data were gathered from October 1995 to April 1996. The subjects for the research included nine mothers of mentally handicapped daughters whose ages ranged from 12 to 18 and who attended one of three special schools located in either Inchon or Seoul. The data were recorded and analyzed ; meaningful statements were grouped according to subjects raised by the mothers. Content Analysis was also applied to identify similar content and confirm common experiences, and to highlight concepts and categorized them. The results of this study are as follows. Five categories were identified ; mothers' emotional responses to their mentally handicapped daughters' menarche and menstruation were of severe despair accompanied by anxiety, guilt, fear, anguish, shame and pity because the mothers were afraid their daughters would not be able to use appropriate hygienic measures during menstruation and the mothers felt heavily burdened in having to look them. The mothers also had negative feelings about their daughters' physical development. The experience of mothers related to their daughters' possibilities for marriage and pregnancy were of powerlessness, distress, withdrawal, fear, pity and desperation and they were afraid that their daughters might be violated sexually. The mothers rejected the possibility of marriage and pregnancy for their daughters and instead planned very restricting futures for them. The mothers used various coping methods to bring meaning to their lives. Because the negative emotional responses of the mothers, nurses need to work to empower mothers to overcome these negative responses. Sex education can also play an important role especially for the daughters especially through the use of visual aids. Further, nurses should understand the learning difficulties of mentally handicapped daughters, what mothers need and also what they experience with their mentally handicapped daughters. In conclusion, nurses should understand the negative experiences of the mothers in relation to their mentally handicapped daughters' menarche help the mothers cope with the negative. emotions through real life education and counselling. In addition, there is a need for nursing interventions and an administrative system which will minimize the prejudices of society towards handicapped people.

A Study of Clinical Diagnosis and Evaluation of Ability of Mentally Handicapped Children

At The lnstitute of Handicapped Children, 1100 mentally handicapped children with the Griffiths Mental Development Scale (GQ) less than 8O were investigated during a 5 year period between January 1981 and December 1985 to determine the cause of their intellectual deficit, to diagnose their condition and to assess their ability. Of 1100 children, 776 (69.6%) were diagnosed clinically. Cerebral palsy was the most common cause (22.5%) followed by microcephaly (14.6%), seizure disorder (12.4%) and chromosomal anomaly (4.4%). Preventable disorders such as cerebral palsy, chromosomal anomaly, metabolic disorder and endocrinologic disorder were found in 314 cases (28.5%). It is emphasized that prenatal care, fetal monitoring, chromosomal study and a screening test for hypothyroidism and phenylketonuria are indeed required for prevention. When the Griffiths Mental Development Scale was used to assess the children's ability, 96.5% required medical and paramedical treatment such as education and training. In order to assess a mentally handicapped child completely, specialists from various fields are needed to work as a team in an assessment unit where knowledge from all fields can be concentrated. In addition, sociefy as a whole should become more interested in these affairs.