In Chile, the incidence of Down syndrome is 2.47 per one thousand births, a rate which is gradually
increasing. The moment of diagnosis is considered to be a crucial moment in the mother’s
process of assimilation.
The objective of the present study is to describe the experiences of mothers of children with
Down Syndrome at the time of diagnosis.
Methodology: A descriptive qualitative study. The sample was composed of mothers belonging
to the corporation “EduDown Providencia”. Ten individual semi-structured interviews
and two focus groups were conducted, with prior informed consent. Interviews were recorded,
textually transcribed, and analyzed.
Results: There were three major categories related to the study objectives – factors influencing
the reception of the diagnosis, the role of the health professionals, and support networks –
and two emerging categories.
Discussion: In the prenatal diagnosis, it is important to prepare the mothers in order to guide
and accompany the process, from the notification until after the birth, a fact which was not manifested
in this study. Recommendations regarding the notification of the diagnosis, especially if
it is postnatal, include protecting privacy and facilitating a quiet environment, to inform both
parents accompanied by the newborn. The mothers of this study did not present feelings of guilt,
rejection and denial towards their children, in contrast to the findings of other studies. Mothers
discussed the lack of skill that professionals had in communicating the news and the economic
difficulties associated with having a child with this condition.
Keywords:
Down Syndrome, diagnosis, experiences, moment of diagnosis
Azócar, E., Cerda, J., & Mella, M. (2018). Experiences of mothers of children with Down syndrome with respect to the notification of diagnosis. Revista Chilena De Salud Pública, 21(2), p. 113–122. https://doi.org/10.5354/0719-5281.2017.48903
