I had the pleasure of working with a WONDERFUL group of parent and child volunteers for the past two years that has finally resulted in this awesome project. I cannot wait to share…but first, let me back up.
Attention deficit-hyperactivity disorder or ADHD is a common neurobehavioral condition that starts in childhood. About 11% of 4 to 17 year old children have been diagnosed with ADHD (Click here: For statistics and data, check out the Centers of Disease Control and Prevention webpage about ADHD). It is a condition that can lead to a lot of stress and strain on the family and parent-child relationship. Much of what we do in the clinics is to identify and manage ADHD. Traditionally for physicians “treatment” was equal to prescribing medications. Many more pediatricians and family physicians are identifying children with ADHD and starting treatment. However, other forms of “treatment” for this condition includes behavioral therapy, educational services and parenting support.
The other treatments are usually things that busy physicians would refer a parent to someone else in the community or school for. This is sometimes because of the high volume of patients being seen and the shorter visits.
When it comes to ADHD, you do not want to just “label” anyone with this condition, especially a child. There is a lot that goes into the diagnosis. At the very least, the doctor should get input from the teacher/daycare provider, observe the child, get a thorough history of the child’s development, behavior and health…and all the while making sure other conditions are not the cause (like anxiety or learning disorders).
When it comes to ADHD, there is also a lot that goes into creating the right treatment plan. There is a misconception that when a child is diagnosed with ADHD that automatically means a child needs to be on medication.
NO. Medicines are not the first line treatment.
Behavioral therapy and parenting support is.
However, these services might not exist because of a lack of providers in the community; the provider accept only a specific type of insurance or ask for cash only; and let’s face it…asking a parent to go to yet another person for ongoing help can be challenging. The parent must be open to meeting with and working with someone new, have reliable transportation and time for additional appointments… and the list goes on.
For the past several years I have been leading a team developing and testing a group visit model that invites a small group of families to a 60 minute group visit. Parents were in one room and children were in another. Sixty minutes allow the facilitator (in our studies, it was either a pediatrician, mental health therapist, or psychologist) to educate and support families on common topics related to ADHD. In these groups, children began learning skills to organize for school, to make friends, to identify and handle negative emotions, to learn ways to talk with their parents about their feelings or medications…skills that pediatricians would typically refer families to go elsewhere. What was cool was it happened in the pediatric clinics as part of routine follow-up.
Yet, it is challenging for clinics to offer these visits because of all the things that are required to make it work. The biggest hurdle though is that group visits may not always be offered at a time that all families can easily get to the clinic.
Parents who have been working with me on our #ADHDGroupVisit project met multiple times to discuss what they would like to do beyond the study. They decided what they loved about the group visits and what kept them coming back were the support they received from others and hearing the stories. One mother aptly pointed out,
“At 3AM when I cannot sleep and I am worried, I cannot go to the clinic. I go on the internet and look up information.”
So what did they dream of?
Creating a series of videos with the intent to share their personal stories about what they learned through the course of parenting a child with ADHD and what advice they have to offer to other families with children who have ADHD. Stories they have to share working with teachers and what they learned when partnering with schools.
The families involved in this project felt the project was necessary for other families dealing with ADHD because
“the information out there is not very personal. The personal aspect along with the ‘on demand’ availability would give access when they need it from parents that have been there.”
Moreover, videos were the felt to the be best way to accomplish the goal
“because of convenience (not having to get out of your pjs to find a possible answer). Videos are very popular among today’s kids and young adults.”
And so, our YouTube channel: Let’s Chat ADHD was born. We got some funds from the Agency of Healthcare Research and Quality to move this idea forward. We hired our video production team and coached parents through the process of sharing their stories on camera. It was a lot of fun for all.
When asking our families what they hoped this project would achieve, they summed it up this way.
“Hope that the project helps families further understand ADHD in all of its forms. Early diagnosis, medicinal help and personal stories will help families to see the issues from another family’s perspective.”
So do you have questions about ADHD? Do you want to hear from families who are just like you and struggle with questions about medications, homework, partnering with teachers, or how to stay sane and keep it all together?
This is our group’s first set of videos! We have more coming.
HOW YOU CAN HELP
We need the help of bloggers, tweetiatricians, and those on social media to help us spread news of this project and our families’ voices. If you like the videos, please consider sharing widely on your social media networks. We also have a link to a brief survey to get feedback. Those who complete the survey and provide an email address will be entered into a random drawing for 1 of 50 $5 electronic Amazon Gift Cards.
I am very proud of the work this group of families have done and for being brave enough to share their voices.
**Information contained in the videos does not constitute medical advice. Please talk to your child’s doctor about your child’s needs. Videos are meant to be educational/informational in nature only and reflect the views of the participating parents.
For more information about ADHD go to:
www.CHADD.org: The National Resource on ADHD