How young adults prefer to learn transition skills
The third study aimed to better understand the experience and preferences of young adults themselves as they transitioned from pediatric to adult care. Kristine Carandang, PhD, a postdoctoral scholar at the University of California, San Diego, and colleagues first conducted focus groups with 39 adolescents and young adults, ages 16-28 years, who had rheumatic conditions. Using the qualitative data from the focus groups, they designed a survey to capture quantitative data on young patients’ experiences.
Dr. Courtney K. Wells
“What we’re always trying to work on is, how do we bring that youth voice more clearly into the research literature?” Courtney K. Wells, PhD, MSW, an assistant professor of social work at the University of Wisconsin–River Falls, said in an interview. She noted that both she and Dr. Carandang were patients with rheumatic diseases, so they had lived and grown up with disease themselves and then become researchers.
“We have the information that’s in the literature, but then we also both work with youth in a couple different ways, and what we hear from youth is what we heard in our paper, but it isn’t all represented in the literature,” Dr. Wells said. That disconnect is why they also included two young adults as coauthors in the study.
“As much as we appreciate the model of the six components [of health care transition], we recognize that the youth voice isn’t represented very well,” Dr. Wells said. “The way it’s written is more for doctors and policy makers and targeted for the health care system rather than the young people themselves.”
Their research bore that out. Among 137 survey respondents, aged 18-28 years, the vast majority (89%) were women and most (75%) were White. Half the patients (50%) had a diagnosis of lupus.
“For 9 out of 11 self-management and self-advocacy skills examined, there was a significant difference between how adolescent and young adult patients experienced learning self- management skills versus how they would have preferred to learn the skills,” the researchers concluded. “Overall, adolescent and young adult patients most frequently learned about transition skills from their parents. Most participants would have preferred to learn these skills from their rheumatology team.”
For example, 46.7% of the respondents learned how to communicate their medical history from their parents, but 48.5% would have preferred to learn that from their rheumatology team. Only a quarter (24.8%) had learned that skill from their health care team.
“For most of these skills, they were getting that information from their parents, which is concerning because their parents don’t necessarily have information that is accurate,” Dr. Wells said. “Their parents managed their health care, and they taught them to do it the way they were doing it.”
Just over one-third of respondents said they learned from their parents how to track their symptoms so they could answer the rheumatologists’ questions. Only one in five respondents (20.4%) had learned this skill from their rheumatology team, but 41.2% would have preferred hearing it from their health care team, compared with 22.1% who preferred learning it from their parents.
Nearly half the respondents reported learning from their parents how to advocate for themselves when dissatisfied with their care or symptoms (49.6%) and how to talk to the office staff to make appointments, fill out paperwork, and access health records (47.4%). Just over half (51.5%) would have preferred to learn about office communication from their health care team. Preferences on self-advocacy were split between learning from parents (36.8%) and learning from their health care team (31.6%).