Impact Of Down Syndrome Among Families Who Have Children with Down Syndrome and Have Follow-Up for Their Children at Black Lion Hospital In 2019.

Abstract

Background: - Worldwide Down syndrome is a common chromosomal abnormal condition. Itis also known as trisomy 21. Children with down syndrome have delay in growth and hypotonic this interferes with feeding, constipation led to malnutrition, poor motor development, delay cognitive development and mental retardation, congenital heart disease and risk of ear infection. The effect of Down syndrome differs among individual depending on the extent of abnormality and the health care service available even in developed countries despite the extensive knowledge of health conditions in children with Down syndrome, the impact of Down syndrome on families and access to health care for persons with Down syndrome remains understudied. All these will affect family life differently. Therefore, exploring the impact of Down syndrome among families who have children with Down syndrome will provide a paramount input for care providers, researcher and policy maker. Objectives: - To explore the impact of Down syndrome on family among families who have children with Down syndrome and have follow up for their children at black lion hospital 20 in 19. Methods: -The researcher use phenomenological research design. Data was collected through in-depth interview, Focus group discussion and key informant interview. These major categories were aggregate from the raw data collection and then framework analysis and identify themes across all sources of data. Result: - From the Analysis of the data six major themes were categorized. Non acceptance –Birth of an abnormal child, Lifestyle changes, family relationship, unpredictable future of the child, basic service and Societal and Community acceptance. Conclusion: -The findings show that birth of a child with Down syndrome produces a lot physical and psychological effect in parents. So, parents need adequate support from Government and concerned body in general and also from nurses in particular right from the very birth of a disabled child. Therefore, this study is important for nurses working with families having children with Down syndrome. As nurses are the eye to blind, leg to amputate based on this, it is their role to realize and aware of the problems faced by the families and should advocate necessary support.