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 Researchers in Wales who interviewed teens being treated for a range
of chronic conditions, like epilepsy or diabetes, found these young
patients want to be involved in decision-making about their
treatment and want parents and doctors to see their contribution as
important and positive, yet they often feel adult opinions carry
more weight than theirs.
These findings "could help doctors understand that when they have
teenagers who are becoming mature adults, they really need to talk
to them as much, or maybe more, than they talk to their parents,"
said Glyn Elwyn, a professor at the Dartmouth Institute for Health
Policy and Clinical Practice in Hanover, New Hampshire, who wasn't
involved in the study.
Amber Jordan, a researcher at Cardiff University, and her colleagues
recruited teenagers from clinics treating different types of
long-term disorders.
As reported in the Journal of Adolescent Health, the researchers did
one-on-one interviews with 19 teens, ages 13 to 19. Then they
identified the major themes emphasized by these young patients in
describing their experiences with decisions about matters like
beginning or discontinuing treatment, changing medications or
dosages, undergoing surgery, making lifestyle changes or
participating in a clinical trial.
Among the questions, researchers asked teens to describe their
actual role in making decisions and their ideal role, as well as
that of their parents and physician. Teens drew a pie chart to
visualize proportionate roles in both cases.
One 18-year-old girl with epilepsy indicated in her drawing that her
doctor had about 50% of the decision-making power while she and her
parents each had about 25%. Ideally, she would have liked to play
the major role in the decision, and would have liked the doctor and
her parents to have equal but lesser roles.
Among the insights researchers gleaned from the interviews was that
dynamics between patient, parents and physician strongly influence
how involved the teen is in medical decisions.
When adults are seen as having more influence over the decision,
teens can feel as though they are not allowed to be involved.
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When faced with a loss of control, some teens could refuse to engage
in discussion, Jordan noted in a phone interview. One patient
reported that she decided to stop her medications altogether.
"She made that decision on her own. There were obviously
repercussions afterwards. She described it as a result of feeling a
lack of control - nobody was involving her in the conversation,"
Jordan said.
Jordan said parents should be informed that it's good for teens to
get involved in medical decisions. Past studies show that a shared
decision may increase adherence to self-management plans, for
example.
Another theme in the interviews was that teens want to feel "ready"
to participate in decisions. At first, being diagnosed with a
long-term disease can disrupt a teen's sense of identity, leading to
their just accepting a decision, or disconnecting from the
conversation altogether.
"You're shocked cuz you've obviously just been diagnosed and then
it's hard to take in so much information because it just feels like
it's been like forced on you," said one female patient suffering
from an endocrinological disorder.
"Results of this study apply to everybody, because health
professionals are not very good in general about helping people
understand reasonable options and taking their views and preferences
into consideration," Elwyn said.
SOURCE: https://bit.ly/2jZJMLi Journal of Adolescent Health, online
August 5, 2019.
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