To cap off National Children’s Mental Health Awareness Week, I’d like to highlight a fascinating report that presents youth and families’ attitudes toward children’s treatment with psychiatric medication.
As I argue in my new book, Dosed: The Medication Generation Grows Up, the topic of medicating young people is endlessly debated, but all too rarely do we hear from the young people themselves about their experiences.
This report, published a few years back by the Parent/Professional Advocacy League and the Institute for Community Health, two research and advocacy groups in Massachusetts, is an exception. It provides a valuable look into youth perspectives of their psychopharmacological treatment.
The report analyzed surveys from nearly 300 parents or guardians and 66 youths, the vast majority between ages 12 and 19 (3 percent were 11 years old or younger). The full report can be found here. In this post, I’ll focus on the young people’s responses.
As the authors of the report write, “Youth taking psychotropic medications are seldom asked for their opinions and their experiences. They have strong feelings and are surprisingly well informed. They were glad to be asked for their perspective and thoughts about the medications they take and what impact those medications have.”
A few caveats, first. The sample likely included a somewhat more troubled group of young people than the average child taking a psychotropic drug.
The report’s young subjects had moderate to significant mental health care needs, most had more than one mental health diagnosis (ADHD, anxiety disorders and bipolar disorders were among the most common), and a quarter had been diagnosed before age 4. Most were on multiple meds, with 22% taking 4 or 5 drugs at once and 13% taking 6 or more.
Despite the demographics of this sample, I think their responses are still very much worth considering as we think about the much larger population of medicated kids don’t get a chance to express publicly their opinions about their medication treatment.
I recommend reading the full report to glean the parents’ perspectives, too, but here are some of the highlights from the youth surveys:
Unlike their parents, who were more worried about long-term effects, the youth surveyed were concerned about the here-and-now. Not surprising, in my opinion, given that they are the ones who have to contend with the troublesome side effects, like weight gain, dry mouth, and even personality changes, which may have implications for their sense of self and their social relations. In addition, teenagers typically have not developed the cognitive capacity to think long-term in the same way adults have.
53 percent of teens said the side effects made them want to stop taking their meds. Given that teen rates of nonadherence to medication are very high and side effects are a frequent reason for quitting meds or not taking them as prescribed, this is a statistic worth taking seriously.
Of note, 31% said their prescriber explained that the medications could interact badly with illegal drugs or alcohol, but half said the prescriber didn’t give any information to this effect. This is troubling, given the potentially dangerous interactions at stake and young people’s propensity to experiment with alcohol and drugs.
Teens felt that the news that they were taking meds left them open to judgments about both having a disorder and about the fact that they were taking drugs to treat it.
They were vastly more comfortable confiding in a close friend than with having larger peer groups know, though only about half said they were comfortable with having any friends know about their medication regimen.
Eighty-one percent were comfortable with the school nurse knowing about their medications, sixty-one percent would tell a teacher, but just over half were okay with a coach, principal or other school professional being informed.
Sources of Information
More than 80 percent of teens consulted a doctor for information about their meds, more than 60 percent consulted parents. Even if a doctor was accessible, however, most said their parents had been the ones to explain to them originally why they needed medication and to justify the drugs’ benefits.
About half said they felt included in decision-making about their medications. I found it poignant and unfortunate that this figure wasn’t higher – as one young person wrote in the survey, “Having a say in what you take is one of the most important things. Your opinion is important.”
Just 5 percent consulted the internet. The last piece of information surprised me, given the time teens spend online and the wealth of information available.
The researchers also conducted small focus groups with teens in which some of their young subjects remarked being offended by television ads’ trying to win them over with what struck them as a false sense of sympathy.
Were Meds Helpful?
Eighty percent of the youth surveyed said they thought their medications were helpful, although unlike their parents, they tended not to make an overall assessment about the drugs’ usefulness, pointing instead to specific ways the drugs helped them. One wrote, “I like it when my night time pill kicks in so that I can sleep. It was pretty hard to get to sleep before.” Another noted, “Some meds help you concentrate and focus at school.”
The report’s authors noted that generally, the youths were less ambivalent about the decision to take medications than their parents were. They struggled with certain contradictions – they didn’t like taking the drugs but often found the medications helped relieve symptoms, but seemed to accept the trade-offs more matter-of-factly.
From the interviews I have conducted with slightly older young adults in their 20s and 30s, I wonder if some of that ambivalence may show up a bit later on in life, when they have had some time to reflect on their earlier experiences, and have also spent more time on the drugs.
I’d be eager to hear your thoughts about the results of the survey, or, as always, your stories about taking medication!
*Thanks to Lisa Lambert at PPAL for bringing my attention to this report.
Image courtesy of http://theartofchildhood.wordpress.com/category/uncategorized/