Thanks to modern healthcare, more children than ever survive serious chronic illness. Many thrive as young adults, but a large new study finds that for some, early illness can lead to fewer years of education, more joblessness and lower pay. The good news is that when they grow up, these kids are just as likely to blossom socially, enjoy romantic relationships, and get married as healthy kids, finds the study in the Journal of Adolescent Health online.
Researchers led by Gary Maslow, M.D., looked at two sets of interview data from the National Longitudinal Study of Adolescent Health. The more than 13,000 respondents were middle or high school students during the 1994-1995 school year.
The study compared participants with childhood illnesses – cancer, heart disease, diabetes or epilepsy – with those who either became ill as adults or who had never had one of the four medical conditions.
As a group, children with long-term illness are “are at very high risk of educational and vocational problems,” said Maslow, a primary care research fellow at the University of North Carolina at Chapel Hill and a pediatrician at the Duke University Medical Center.
The study found significant differences as participants reached adulthood – ages 24 to 32. Children with chronic illness were less likely to graduate from high school, attend college, or graduate from college. Only 52.5 percent were employed, compared with 67.5 percent of those with no illness or adult-onset illness.
Income was $5,157 lower on average for those with childhood illness, who were twice as likely to need public assistance during the six-year study period. However, “even though there are differences, the vast majority of people with chronic illness are doing quite well,” said Stephen Daniels, M.D., pediatrician- in-chief at Children’s Hospital in Denver. He has no affiliation with the study.
In many ways, childhood illness survivors are keeping up with their peers, the study shows. “These kids are very socially resilient and do manage to form connections. It may take them longer, perhaps, but by and large they can form those peer relationships,” Maslow said. “In terms of getting married, having children, living independently and having high-quality romantic relationships, they did as well as kids without significant illness.”
When a child becomes sick, a family’s attention naturally turns to medical issues above all else. “Initially, parents are focused on obtaining appropriate medical care for their children and especially with cancer, they worry about survival,” said Martha Askins, Ph.D., psychosocial director of the Adolescent and Young Adults (AYA) Program at the Children’s Cancer Hospital at MD Anderson. “Suddenly, usual daily activities and routines such as school take a back seat to the diagnosis and treatment of the child’s illness.”
However, she said, “once they’ve gained confidence that the treatment seems to be working well, and they really see that there’s hope, they want their child to have as normal an experience as possible socially and educationally.”
Serious illness can interrupt or interfere with school in a number of ways: absences, debilitating medical treatments, or disabilities that result from the disease. “Children with cancer have periods of time that may go from six months to two years where they can’t actually go to school because their immune system is compromised. So it’s very important to try to help the children find ways to maintain their academic development and momentum for studies, even though they’re not able to participate in traditional classrooms,” Askins said. “They may receive homebound education or they may participate in a hospital school program. Even more and more common are online programs such as virtual school.”
In 1997, Askins spearheaded the AYA program to help young cancer survivors with educational and vocational issues. Today it employs two fulltime vocational counselors. “We strive to help childhood cancer survivors as well as young adults with cancer find career paths that are meaningful to them and will be manageable and achievable,” Askins said. “We need to understand if they have any learning differences or physical or cognitive disabilities, and if so find ways to help them remediate or compensate for these disabilities in their career aspirations.”
Maslow has been involved with programs that teach kids with illness to be successful, including a brand-new program at Duke. “It’s a group mentorship process where teens learn from the college students who also grew up with a medical illness,” Maslow said.
Daniels said that with “half a million kids with special health care needs turning 18 each year,” “we want to be careful to win the battle but not lose the war. As we do better in health care, we also want to do more so these children have a better life experience and a better chance.”
Material adapted from Health Behavior News Service, part of the Center for Advancing Health.