Impact of Down Syndrome among Families who Have Children with Down Syndrome and Have Follow up for their Children at Tikur Anbessa Hospital in 2019.
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Date
2019-06
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Addis Ababa University
Abstract
Background:-.Worldwide Down syndrome is a common chromosomal abnormal condition .It is alsoknown as trisomy 21.Children with down syndrome have delay in growth and hypotonic thisinterfere with feeding ,constipation lead to malnutrition, poor motor development, delay cognitivedevelopment and mental retardation, congenital heart disease and risk of ear infection. The effect ofDown syndrome differs among individual depending on the extent of abnormality and the health careservice availableEven in developed countries despite the extensive knowledge of health conditions in children withDown syndrome, the impact of Down syndrome on families and access to health care for personswith Down syndrome remains understudied. All these will affect family life differently. Thereforeexploring the impact of Down syndrome among families who have children with Down syndromewill 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 childrenwith Down syndrome and have follow up for their children at Tikur Anbessa hospital 20 in 19.
Methods: -The researcher use phenomenological research design. Data was collected through in depthinterview, Focus group discussion and key informant interview. These major categories was aggregatefrom the raw data collection and then framework analysis and identify themes across all sources ofdata.
Result: - From the Analysis of the data six major themes were categorized. Non acceptance –Birth ofan abnormal child, Lifestyle changes, family relationship, unpredictable future of the child, basicservice and Societal and Community acceptance.
Conclusion:-The findings show that birth of a child with Down syndrome produces a lot physicaland psychological effect in parents. So parents need adequate support from Government andconcerned body in general and also from nurses in particular right from the very birth of a disabledchild. Therefore this study is important for nurses working with families having children with Downsyndrome. As nurses are the eye to blind, leg to amputate based on this ,it is their role to realize andaware of the problems faced by the families and should advocate necessary support.
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Down Syndrome ,Impact ,Parents ,Primary Guardian