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 also
known as trisomy 21.Children with down syndrome have delay in growth and hypotonic this
interfere with feeding ,constipation lead 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 Tikur Anbessa 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 was 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.
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Keywords
Down Syndrome ,Impact ,Parents ,Primary Guardian