Care of a child with Down`s syndrome subjectively assessed by parents

Introduction: Down`s syndrome (DS) is one of the most common chromosomal anomalies caused by
trisomy 21 with a prevalence of 1/800-1000 life births, irrespective of gender. Due to medical advances and improved overall medical care, the median of survival of individuals with DS has significantly increased.
The aim of the study was to present subjective assessment of parents regarding their attitudes towards DS, functioning in the society and family environment.
Material and methods: A diagnostic survey was carried out among parents of children with DS aged
0-10 (88.4%), 11-20 (8.4%) and 21-30 years (3.4%). The study included 95 respondents; 96.8% of women and 3.2% of men). The research tool was the author`s questionnaire consisting of 20 open and closed questions.
Respondents participated in the study on a voluntary basis and were informed about their anonymity.
Results: The information of the child`s disease was shared with 38.9% of parents immediately after delivery; 35.8% were informed during the first post-delivery day and 25.3% learned about the disease differently. Only 14% of women had prenatal tests, which enabled them to prepare for the delivery of an intellectually disabled child. As far as the difficulties related to raising DS children is concerned, 48% of respondents reported lack of adequate medical care and queues to specialists; 20% indicated lack of support and health-related problems of children while 3% struggled with financial problems. The negative feelings associated with DS child care included lack of time, tiredness, sorrow; however, such reactions were accompanied by the feeling of happiness, strength and optimism.
Conclusions: Parents of DS children declare higher responsibility, emotional maturity and efficient time
management. Support of families and friends proves crucial for acceptance of Down`s syndrome.

Published in 22 (2) Keywords: , ,

In press:

Volume 24 (1)

Archival issues:

Vincent Pol University in Lublin