September 10, 2019 / 8:19 PM / 2 months ago

Teens with illnesses want role in decision-making

(Reuters Health) - Teens with chronic illnesses would like to have a say in decisions such as switching to a new medicine, but they often feel left out of the conversation, a small study suggests.

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.

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: bit.ly/2jZJMLi Journal of Adolescent Health, online August 5, 2019.

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