Down syndrome project busts myths about quality of life – UQ News
According to a first Australian study conducted by researchers at the University of Queensland, young adults living with Down syndrome have high aspirations and a great zest for life.
A team led by Associate Professor Rhonda Faragher and Dr. Janette Lloyd from the UQ School of Education conducted interviews and focus groups across the country, exploring Gen Z’s quality of life with Down syndrome.
“UQ’s Down Syndrome Research Program has been running for 40 years and we were curious to find out what life was like for those who had just graduated and how their lives might be different from previous generations. “, said Dr. Faragher.
“We felt that new technologies, inclusive education and community engagement would have impacted the experiences of the next generation of young adults.”
Four research assistants – all with Down syndrome – were employed by UQ to conduct interviews and focus groups around the country.
“They were invaluable in helping us see things in a different way, such as choosing words and images to make information more easily understood by study participants,” Dr. Faragher said.
“We were learning as much from them as they were learning from us!”
The team interviewed 26 people between the ages of 18 and 30 to collect data to inform national and international policies and practices.
“Families in Australia are routinely given false and outdated information about Down syndrome,” Prof Faragher said.
“This has implications for the decisions parents are asked to make in a range of contexts such as prenatal testing, education and health care.”
The study found that rather than a poor quality of life, Gen Z respondents had high hopes and dreams of jobs and hobbies, as well as joy and satisfaction in their relationships with family and friends. their friends.
“They are engaging with technology in a very smart way, even people who had limited communication used their devices to find things they were interested in online, as well as text and FaceTime,” Dr. Faragher said.
The study also revealed that the participants were very aware of their limitations and did not like to be treated differently.
Dr. Faragher said young people with Down syndrome expect to be treated with respect and dignity, but study results suggest low expectations and perceptions of incompetence persist.
“One participant said she was approached by police after a sporting event to ask if she was okay when she had just booked an Uber for herself,” she said.
“Although the police had good intentions, they could have just asked her if she enjoyed the game to find out if she was okay without singling her out.”
The research, Stepping out of the world: the new adulthood for Gen Z with Down syndrome, was funded by the National Disability Research Partnership (NDRP) hosted by the University of Melbourne and funded by the Department of Social Services.
Above left: Gen Z participant Callum Scanlon and his mother Margaret Scanlon. Picturesprovided.
Media: Professor Rhonda Faragher, firstname.lastname@example.org, UQ Faculty of Humanities and Social Sciences, Kristen Johnston, email@example.com, +61 407 656 518; UQ Communications, firstname.lastname@example.org, +61 429 056139.