Study Suggests Gen Z With Down Syndrome Have Embraced New Tech
Other research comes from a long-running project in Queensland that supports the high quality of life for people with Down syndrome and can help block misinformation given to expectant parents.
The Down Syndrome Research Program is in his 40se year. The University of Queensland team believe this is the oldest and most comprehensive study of its kind in the world.
And that often holds surprises.
Associate Professor Rhonda Faragher, director of the research program, said one of the most surprising parts of her recent research on Gen Z with Down syndrome was how technologically adept they were.
“The attendees are then tech savvy. They’re right in it,” she told me.
“Our assumption is that this is a very socially included generation…they are surrounded by people who engage with social media, who use technology in all kinds of ways. So for them, it’s natural. It is part of their commitment to the world.
This included Alana Pettigrew, one of the project’s research assistants who also has Down syndrome, who joined Rhonda and me for a zoom interview.
Pettigrew told me about her experience as a research assistant. After applying via video, she was one of four research assistants hired to help the team find and interview Gen Zers with Down syndrome.
“I liked talking with a lot of different people in the room,” she says. “I like to be myself.”
In particular, she was able to help the team communicate with a less verbal person by clenching both fists and asking the participant to point to either hand.
“I used my hands – one for yes and one for no.”
Down syndrome – also known as trisomy 21 – is a set of characteristics that occurs in people with an extra chromosome 21. Faragher highlights the transition in our community regarding the quality of life for people with Down syndrome.
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“In the 1960s, for example, when they lived in institutions, there were no heart treatments like Alana had and there were no antibiotics to help people, but they were also social environments. disadvantaged. These children, they died in adolescence – that was the life expectancy. Most didn’t speak, it was unheard of that they were reading,” she said.
“Now it is no longer the remarkable few who learn to read, it is more unlikely that they do not. We just learned so much more about what we need to provide in the social environment that allows people to thrive.
Faragher’s recent research has focused on a particular group of people – Generation Z or “zoomers”.
The research, which has completed data collection but has not yet been published in a peer-reviewed article, interviewed 26 people from across Australia aged between 18 and 30. There were three main research questions: What common aspects characterize the life of Gen Z with Down syndrome? What does Gen Z with Down syndrome value in life? What factors affect their quality of life?
“What our data has confirmed is that our Gen Zs have really great lives. Their quality of life – a life full of meaning and purpose – is rich and they really enjoy it,” says Faragher.
Unfortunately, despite technological and societal advances, Faragher suggests that many people still see people with Down syndrome as having a lower quality of life.
“There are people who pity people with Down syndrome. They think they can’t have a full life,” she says.
“I think the world is becoming a better place for people with Down syndrome and we’ve seen that through our research. There’s still a long way to go, of course.
“Advocacy and social inclusion drive these improvements.”
“People didn’t like being presumed incompetent. It’s really annoying… there’s a presumption by some in the wider community that people shouldn’t go out without a support worker or family member.
Faragher uses the example of someone trying to hire an Uber.
One participant communicated exclusively through their smartphone, either typing messages or showing pictures, underscoring the importance of technology to the zoomers in the study.
Despite this technological capability, Faragher told me that signing up new payroll research assistants was one of the biggest challenges because the University’s automated onboarding software was virtually inaccessible.
This research is especially important because of the increase in prenatal testing and subsequent abortions if a fetus is diagnosed with Down syndrome.
In 2021, Down Syndrome Australia conducted an investigation of 320 parents who had a child with Down syndrome. They found that 42% of expectant parents received misinformation about living with Down syndrome and 49% felt pressure from healthcare providers to terminate their pregnancy.
It is very rare that new parents receive contacts for people with Down syndrome or organizations that could provide information. Instead, doctors and other medical professionals are tasked with providing this in a very short period of time, which can sway parents one way or the other.
“We know they’re not getting the right information,” says Faragher.
“If doctors have an unconscious bias because they’ve never met someone with Down syndrome and their memories are from when they were trained decades ago…parents are going to make a decision that might not be the decision they would have made if you had a vision of what adulthood is like for people with Down syndrome.
“And it’s a life that brings joy and pleasure to the people around them.”