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  • Title: KAP study on mothers of children with Down syndrome.
    Author: Lakshminarayana P, Ibrahim S, Venkataraman P, Jagatheesan T, Kamala KG.
    Journal: Indian Pediatr; 1991 Sep; 28(9):997-1001. PubMed ID: 1839390.
    Abstract:
    We evaluated 50 mothers of children with Down syndrome attending Genetic Clinic of the Institute of Child Health and Hospital for Children, Madras, with special reference to their knowledge, belief and attitudes in the care of these children. After evaluation, they were educated individually and in groups with demonstration, picture cards and pamphlets, on the causation, expected health problems, developmental potential of Down syndrome and the ways and means to help the child to attain the maximum developmental potential. They were taught on preventive aspects of Down syndrome as well. Re-evaluation was done after three months, and considerable improvement was noted in the mother's knowledge, and attitude towards bringing up such a child. The mothers also showed an improvement in the skills in providing developmental enrichment to these children. Thus this study has formulated a programme in the management of such children, which can be practised on any population, anywhere, especially, in rural areas, and by less affluent folk, with poor educational background. Between May-October 1989, physicians selected 50 mothers of low socioeconomic and educational background with Down Syndrome (DS) children who attended the Genetic Clinic at the Institute of Child Health and Hospital for Children in Madras, India for a study to evaluate their knowledge, attitude, and practices. The study consisted of a preevaluation, education and genetic counseling, and reevaluation at 3 months. Only 18% of the mothers knew that their children had DS. Physicians had diagnosed it at birth in these cases. Most mothers (62%) came to the hospital because they had noticed developmental delay. Most (64%) did not know what caused DS. 36% believed DS occurred due to various prenatal events including poor diet, weakness, injury, abortifacients, abdominal pain, vomiting, and long birth intervals. Family tended to blame the mothers for the child's disability which evoked social and emotional problems. When 52% learned of their children's handicap, they suffered depression. 80% did not know that their children required special care. Once learning this, however, most mothers (88%) wanted either themselves or someone else to care for their children. 96% breast fed their children and weaned them properly. 90% of the children had received immunizations. After genetic counseling and health education, all mothers understood their children's condition. 75% worked with their children at home doing passive exercises and developing their vocabulary. The rearing practices of the DS children were the same as those of the normal children. The mothers learned via the health education and genetic counseling that family planning and amniocentesis could prevent the birth of a DS child. The health education and genetic counseling program improved mothers knowledge, attitude, and practices toward child-rearing practices of DS children. This program can be duplicated among poor and illiterate parents in rural areas.
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