TABLE 2.
Category | Theme | Example quotation |
---|---|---|
AYA specific barriers | Insurance |
“A patient turns 18 years old and they lose their insurance, right? You have to treat them until they are 17 years old, with 11 months and 29 days. Yes, there have to be policies that favor the prolongation of coverage for vulnerable patients such as oncological patients.” (38) “So, even though I'm an employee and they discount from my check monthly for Social Security, if my daughter reaches 12 years of age, she's not covered anymore because my Social Security doesn't cover it, even though I am a contributor.” (16) |
Education |
“The biggest complication they might face is missing several school days and then trying to go back after treatment because some of them miss entire school years and now they are in school with children who are much younger […]” (12) |
|
Need more AYA specific treatment sites |
“So, having several sites or hospitals [for AYA care] would be great because the distance is also a barrier, right?” (10) “But a normal room in a hospital here has eight beds. They have communal bathrooms. There's a bathroom per floor.” (6) “[…] we're the only organization that sees children with cancer, and we only have one pediatric hospital nationally.” (18) |
|
Facilitators for AYA care | Space designated for young people |
“For example, we had a camp where we took the [AYAs] from Friday to Sunday, without their families, on their own. This is something that changed their lives and it made them realize that they could still do things.” (6) “We also do summer camps with the adolescents […]” (33) |
Supporting AYA survivors |
“One of the things that I do is follow up after [AYAs] finished their treatment – to follow up with them once a year to find out what they're doing with their lives, what they're studying, what doubts they may have, how we can support them.” (18) “We've been organizing a gathering of 80 to 120 young adults every two years for 16 years to discuss these subjects like sexuality, education, participation, and volunteering.” (22) |
|
Existing AYA support groups |
“Through this support group, adolescents like to be with other people their own age. They feel that they can identify with each other. They feel free to talk and express their fears and questions.” (3) “We also connect [AYA] patients who are going through the same experience.” (35) |
|
Providing resources |
“I work a lot with psychological education. I explain to the patient what is happening and what are the expected emotions they will experience.” (15) “[…] the [AYA cancer] program covers the entirety of clinical care. It includes laboratory tests, imaging, and medical and surgical treatment […] for at least five years.” (37) |
|
Continuing Education |
“The unit manages the [education] program of Let's Continue Learning in the Hospital, which allows them to continue [schooling].” (29) “The patient continues their educational activities online. There's a small school in [the shelter for families staying in the city for treatment]. There are workshops for moms.” (30) |