Discuss about the Down Syndrome for Journal of Developmental & Behavioral Pediatrics.
According to Reines, et al (2017) Down syndrome, also known as trisomy 21 refer to a genetic disorder that is caused by the presence of a third chromosome 21. The disease occurs by chance among normal parents and chances of the disease increase as the age of the mother increases. The disease is mostly associated with mental retardation, delayed growth and unusual facial characteristics. The disease has no cure and medical interventions are only focused on improving the quality of life of the infected person. With improved technology, Down syndrome can be detected during pregnancy and the pregnancy terminated although considered illegal in several countries. This paper focuses on the experiences of parents whose children have Down syndrome.
In the contemporary society, little information is known about the disease and in many societies, the disease has been attributed to religion, poverty and poor parenting. The overall consensus is that people with the disease are highly stigmatized, discriminated and rejected. This has led to tendencies of pity, fear or rejection to people who have Down syndrome. Many parents who detect the disease during pregnancy usually opt to terminate the pregnancy. A greater part of the population however still remain in the dark with little information about the causes and what actions can be taken to prevent delivery of a child with down syndrome and the complications and outcomes that result from the disease (Murphy, et al (2017).
Apart from growth and mental retardation, Hansson, et al (2016) argues that Down syndrome also increases the risk of congenital and cardiac disorders, social developments such as language and also physical abilities. The parents to such children therefore encounter several challenges arising from the child’s special needs, the stability of their marriages due to blame game, social and societal stigma, little knowledge on how to handle the child, uncertainties about the future of their kids and stress. Some parents may also develop defense mechanisms to address anxiety that may harm the child or other members of the society. However, research on this topic can help address some of these challenges that these parents face.
According to Douglas, Redley, & Ottmann, (2017) research should be targeted to educate parents on how they can prevent and deal with Down syndrome. Through research, it is possible to address some of the problems that these parents face by changing the societal perspective towards the disease and providing information on how parents can terminate a Down syndrome pregnancy through proper prenatal care. Through research, it is also possible to identify various ways through which the quality of life of children with Down syndrome can be improved.
The study on how to overcome these challenges is based on a conceptual framework. The study heavily depends on the various solutions to the challenge that have worked well in the past and can still be used to minimize the challenges of Down syndrome in the society. For instance, eradicating stigma will mean less challenges for both the parent and the child who has Down syndrome. In addition, early detection and termination of a pregnancy with disability can also provide a long term solution to the challenges associated with such a disability.
References
Douglas, T., Redley, B., & Ottmann, G. (2017). The Need to Know: the information needs of parents of infants with an intellectual disability–a qualitative study. Journal of advanced nursing.
Hansson, H., Bohnstedt, C., Olersbacken, L., Schmiegelow, K., Baekgaard, H., Stensmarker, M., & Schmidt, L. (2016). Challenges in Interaction and Interpretation of Symptoms and Side-Effects in Children with Down Syndrome and Acute Lymphoblastic Leukaemia: A Qualitative Study. Pediatric Blood and Cancer, 63(S3).
Murphy, N., Epstein, A., Leonard, H., Davis, E., Reddihough, D., Whitehouse, A., ... & Downs, J. (2017). Qualitative analysis of parental observations on quality of life in Australian children with Down syndrome. Journal of Developmental & Behavioral Pediatrics, 38(2), 161-168.
Reines, V., Charen, K., Rosser, T., Eisen, A., Sherman, S. L., & Visootsak, J. (2017). Parental Perspectives on Pharmacological Clinical Trials: a Qualitative Study in Down Syndrome and Fragile X Syndrome. Journal of genetic counseling, 26(6), 1333-1340.
