A new study from the U.K. reviews the management of attention deficit hyperactivity disorder (ADHD) by recounting child and family experiences.
The research initiative, termed ADHD VOICES (Voices on Identity, Childhood, Ethics and Stimulants), has involved 151 families in the U.K. and U.S. The study has focused on the ethical and societal issues surrounding treatment of ADHD.
According to the researchers, children living with ADHD tend to feel they benefit from medication to treat the condition and do not think the medication turns them into “robots.”
In fact, they report that medication helps them to control their behavior and make better decisions.
The study, which gives a voice to the children themselves, provides valuable insights into their experiences and the stigma they face.
Biomedical ethicist Dr. Ilina Singh and colleagues interviewed children and their families about ADHD, behavior, medication and identity across four contexts: home, school, the doctor’s office and peer groups. The written findings of their study are accompanied by a series of short films by award-winning animators The Brothers McLeod.
The report is intended not only to highlight ethical and social issues surrounding ADHD but also to help families, doctors, teachers and the children themselves to understand from a child’s perspective what it is like to live with ADHD.
“ADHD is a very emotive subject, which inspires passionate debate. Everyone seems to have an opinion about the condition, what causes it, and how to deal with children with ADHD, but the voices of these children are rarely listened to,” Singh said.
“Who better to tell us what ADHD is like and how medication affects them than the children themselves?”
According to Singh, in many cases and with a correct diagnosis, treatment using stimulants is appropriate and beneficial, particularly if it is complemented by other interventions. The evidence from the children she interviewed suggests that they think medication improves their ability to make their own moral choices.
Glenn (age 10), from the U.S., said: “If you’re driving in a car, and there’s two different ways, and you usually always go this way…and then one day you want to go the other way, but… the ADHD acts as a blocker, so you can’t.
“[The medicine] opens the blocker so that you can go [the right] way. But you still have the choice of going the wrong way… It’s harder [without medication], that’s what’s the truth. But it’s not like [on medication] you’re a robot.”
Researchers found that patient-centered care often took a back seat as children often did not understand their condition or why they were receiving medication. Many children in the study reported that they had little meaningful contact with their doctors.
Investigators discovered that after the initial evaluation, clinic visits tended to focus on side-effect checks, during which children were weighed and measured. Most children were not asked any questions during these visits.
Roger (age 13), from the U.K., said: “I’ve only just started going to the ADHD clinic, but I haven’t actually been to it properly. I’ve seen the doctor and he’s talked about [ADHD] and I get weighed. But… they’ll just say parts of what it is but then they’ll stop, so they will only say some of it and then change the subject.”
Singh argues that children need to be better informed and able to discuss their condition.
“Given the ethical concerns that arise from ADHD diagnosis and stimulant drug treatment, it is imperative that children are able to openly discuss the value of diagnosis and different treatments with a trusted professional.”
The report concludes with a series of recommendations for how parents, doctors and teachers can help children cope with and better understand the condition, and begin to tackle the stigma that currently exists around it.
Peter Hill, M.D., a child and adolescent psychiatrist, said: “We hope that the VOICES Study and the ‘ADHD and Me’ animations will inspire people to think differently about ADHD, drug treatments and children with behavioral difficulties.
“Behaving differently around these children is the main challenge. We hope that the strategies we have outlined will help improve the interactions with these children and help improve their lives.”
Experts are glad that children are finally being included in the debate on how best to care for the condition. Clare Matterson, Director of Medical Humanities and Engagement at the Wellcome Trust, comments: “It is refreshing to hear the voices of children included in the debate about ADHD.
“This report sends a clear message to doctors, teachers and parents about the importance of talking to children about their condition — and more importantly, listening to what they have to say.”
Source: Wellcome Trust