By Natalia Correa.
Eleven years ago, the United Nations established March 21 as World Down Syndrome Day to raise public awareness and recognize the contributions of people with this condition, highlighting the importance of their autonomy, independence and freedom to make their own decisions.
Down Syndrome is a genetic alteration on chromosome 21, which results in intellectual disability. According to UN data, at the beginning of the 20th century, life expectancy was less than 10 years, while currently, 80% of people with this syndrome are over 50 years old due to the social advances that have been made.
Today, we want to present two studies related to the support of families with babies, children or adolescents with Down Syndrome.
New research in Chile: raising children with down syndrome
Marcela Tenorio, alternate director of MICARE and professor at Universidad de Los Andes, is carrying out a FONDECYT research project with 120 children and their parents that will analyze certain parenting factors that could be key in determining adaptive behaviours in babies with Down Syndrome.
The term “adaptive behaviours” refers to the execution of daily activities that are required to be self-sufficient on a personal and social level, that is, to be autonomous. In this sense, the objective of the project is to improve the quality of life of families through a multilevel intervention program, which includes support from a very early age so that the baby will grow up to become an adult with the required skills to function in their everyday life.
Watch this video invitation by Marcela Tenorio: (in Spanish)
On the other hand, Paulina Arango, associate researcher at MICARE and also a professor at Universidad de los Andes, is carrying out a FONDECYT project about the upbringing of adolescents with intellectual disabilities and difficult behaviours. 250 parents will participate in the study, which will explore the different parenting styles and their consequences on the parents’ mental health problems.
In addition, another objective is to provide information on the factors that cause the recurrence of difficult behaviour in adolescents with intellectual disabilities, in order to design better intervention models and public policies with a positive impact on the families’ quality of life.
Watch Paulina Arango’s video invitation here: (in Spanish)