The development of a video intervention to motivate teens to ask providers questions about ADHD

Abstract Our objective was to develop a series of short educational videos for teens and parents to watch before pediatric ADHD visits to motivate teens to be more actively involved during their visits. The development of the videos was theoretically guided by Social Cognitive Theory. First, we conducted two focus groups with teens (ages 11 to 17) with ADHD, two focus groups with teens’ parents, and two focus groups with providers. The research team analyzed the focus group data to create the initial video script. Feedback was obtained from two teen advisory boards and the scripts were revised, then the videos were produced. Based on focus group results, an animated teen newscaster narrates six one- to two- minute videos with different themes: (a) talking to your doctor about your ADHD, (b) controlling ADHD without medication, (c) ADHD medications, (d) ADHD and school, (e) ADHD and relationships; and (f) talking to your parents about ADHD. Each theme includes three key messages and emphasizes how teens should discuss these messages with their providers. Teens, parents, and providers provided excellent insight into developing videos to increase teen involvement during ADHD visits. The developed video(s) are on Vimeo and on a website titled “Information for the Evolving Teenager” (iuveo.org).


Introduction
Attention deficit/hyperactivity disorder (ADHD) is a prevalent mental health condition that affects an estimated 11% of school-aged children in the United States (Visser et al., 2014).The number of adolescents diagnosed with ADHD continues to increase annually (Visser et al., 2014).Youth with ADHD are more likely to have a poorer quality-of-life and impaired peer relationships compared to those without ADHD (Barkley & Fischer, 2019;Dewey & Volkovinskaia, 2018).
The Institute of Medicine recommends that patients should be engaged during medical visits, but limited data exist examining youth participation during ADHD visits (Institute of Medicine, 2001).Pediatric patients across all medical conditions frequently identify that feeling disempowered or intimidated prevented them from participating in visits (Boland et al., 2019).Previous research demonstrates that adolescents and their parents are typically not included in decision making during pediatric ADHD visits (Brinkman et al., 2011).A previous study by Sleath et al. found that during 67 pediatric ADHD primary care visits, only one adolescent and three parents asked their provider a question about ADHD (Sleath et al., 2014).This is important given that another study found that youth with ADHD had an average of eight questions about ADHD and its treatment that they wanted to ask their provider (Sleath et al., 2017).These findings suggest that adolescents have questions about ADHD that they are not asking during their visits.
Pre-visit interventions such as educational videos are effective at improving communication during medical visits and are well received by patients (Sleath et al., 2018;Stribling & Richardson, 2016;Trinh et al., 2014).A prior study in youth with asthma found that use of a previsit video/question prompt list intervention improved youth question-asking and provider education during visits (Sleath et al., 2018).Social Cognitive Theory (SCT) is a theoretical framework that can be used to develop an intervention to improve adolescent engagement during medical visits (Bandura, 1986;DeVellis & DeVellis, 2001).One of the key components of SCT is self-efficacy or the adolescent's confidence in their ability to be actively involved in a medical visit.An adolescent's chronic disease self-management self-efficacy can improve health outcomes and overall quality-of -life (Sleath et al., 2012(Sleath et al., , 2023)).In pediatric patients, receiving technical advice from providers can be an external factor that improves self-efficacy (Clark et al., 2001;Sleath et al., 2016).
Widespread use of mobile devices and social media make videos a favorable intervention mechanism.Youth are more likely to engage with digital mental health interventions if they are easily accessible, simple to use, and age-appropriate (Liverpool et al., 2020).Our objective was to develop a series of short educational videos for teens and parents to watch before pediatric ADHD visits to motivate teens to be more actively involved during their visits.The developed videos will be used in a randomized controlled trial to evaluate if they lead to increased teen question-asking during ADHD visits.

Methods
This research was approved by the University of North Carolina Institutional Review Board (Study #19-1409(Study #19- , approved 6/12/2019)).Prior to the focus groups, all participants completed consent, assent, and/or parent permission forms.

Initial focus groups on video development
Providers, adolescents and their parents were recruited from two rural North Carolina pediatric primary care clinics.Clinic staff distributed flyers to eligible families who then called a designated research team member if they were interested in participating.Inclusion criteria for adolescents were: 11 to 17 years of age, able to read and speak English, had a diagnosis for ADHD, and received care from a provider at a clinic participating in the study.Inclusion criteria for parents were: at least 18 years of age, able to read and speak English, and status as legal guardian of the pediatric patient.Inclusion criterion for providers was to be a practicing provider who cared for pediatric ADHD patients at one of the two participating clinics.
We conducted two focus groups with teens (ages 11 to 17) with ADHD, two focus groups with teens' parents, and two focus groups with providers.Adolescent and parent focus groups were held simultaneously at the same location but in different rooms to make participation more convenient for the families.Each provider focus group was conducted at the clinic during lunchtime.
A research team member moderated each focus group.Adolescents, parents, and providers completed anonymous one-page demographic questionnaires that collected their age, race, gender, and ethnicity before the start of each focus group.Parents were also asked how many years of education they had completed.Providers were asked what type of provider they were (physician, physician assistant, nurse practitioner, or other).Each focus group (adolescents, parents, and providers) was approximately one hour long.All focus groups were completed within a 3-month period.
The focus groups were audio-recorded and then transcribed with identifiers removed.All participants were asked questions about: 1) what they thought about having a pre-visit educational video, 2) what challenges exist to communicating about ADHD, 3) what should be included in the video to encourage communication between adolescents and providers about ADHD, 4) what topics they would emphasize most in the video, 5) what type of video would be best (for example, animated versus live actors) and 6) the ideal length of the video.Providers and parents received $50 for participating and adolescents received $25.

Analysis of initial focus group data
The research team used a coding process that was utilized in prior studies (Pembroke et al., 2021;Sleath et al., 2016).With SCT as our framework, the team identified themes from the focus groups.Six individuals on the research team analyzed the focus group transcripts independently.Each individual identified four themes that adolescents consistently rated as most important across focus groups to include in the educational ADHD video.These themes were sent to the project manager who tabulated the results and presented them at a team meeting.The team then reached consensus on the six themes to address in the videos.Following the identification of six themes, each research team member generated three key messages for each theme.Team members sent their key messages to the project manager who tabulated the results.The research team then met and reached consensus on which key messages to include for each video theme.

Video script drafting and feedback
Video scripts were written for each of the six key themes.The video scripts were written by two team members using FinalDraft Version 11.0 script writing software.The lead team member for the video script drafting was a physician with expertise in developing simple and concise materials for individuals with low literacy.
The scripts were then reviewed by two teen advisory boards comprised of 11 adolescents who are paid consultants from Western and Central North Carolina.Thirty-six percent were male, 81% were White, and 18% were African American.The adolescents ranged from 13 to 17 years of age.Feedback was also obtained from three consultants (two doctors and a psychologist) with expertise in ADHD.Adjustments were made to the scripts based on feedback.

Creation of first video for teen feedback
A sample video "Talking to Your Doctor About Your ADHD" was created to obtain feedback from our two teen advisory boards.The first video was developed using puppets rather than actors due to COVID-19.Each advisory board met virtually via Zoom, watched the video together, and suggested improvements.All of the adolescents on both advisory boards did not like puppets and suggested animated characters instead.Consequently, all of the videos were created using animation.

Demographics
Twelve adolescents participated in the two focus groups.Seventy-five percent were male.Eight percent were Hispanic or Latino, 42% were Native American, 33% were African American, 8% were Pacific Islander, 25% were White, and 8% selected "other" for race.Participants could select multiple races.The adolescents ranged from 11 to 16 years of age.
Thirteen parents participated in two focus groups.Eight percent were male.Fifty-four percent were Native American, 31% were African American, and 15% were White.The parent participants were between 30 to 70 years of age.Seventy-six percent of parents had more than 12 years of education.
Fourteen providers participated in two focus groups.Forty-three percent were male.Thirty-six percent were Native American, 7% were Asian, and 57% were White.Sixty-four percent were physician assistants, 7% were nurse practitioners, and 29% were physicians.Twenty-one percent had practiced as a healthcare provider for less than 5 years, 29% 5-10 years, 21% 10-20 years, and 29% for greater than 20 years.

Educational video format suggestions
Parents, providers, and adolescents all liked the idea of having teens and parents watch an educational video before their visit.Teens suggested that the video should show examples of teens interacting with their doctor at the doctor's office.One adolescent stated the video should show "how do you approach [talking to your doctor] and how do you tell them what you've got to tell them."Adolescents also suggested the video should include a doctor explaining what ADHD is.Providers emphasized that the video should include an individual such as an athlete or someone who the teens look up to and that the video characters should be representative of youth with ADHD.All groups said that the video should be no longer than five minutes to maintain the adolescent's attention.

Video content suggestions
The research team identified six themes: 1) talking to your doctor about your ADHD, 2) controlling ADHD without medication, 3) ADHD medications, 4) ADHD and school, 5) ADHD and relationships, and 6) talking to your parents about ADHD.Each theme was selected to encourage adolescents to ask more questions during their medical visits about these areas.The six themes and the three key messages for each theme are illustrated in Table 1.Each theme is discussed below.

Talking to your Doctor about your ADHD
Parents, providers, and teens all mentioned the importance of teens talking openly with their doctor about their ADHD.One youth stated, "Don't be nervous when you ask the questions because he [or she] is here to listen."Providers emphasized the importance of adolescents asking questions.As one provider said, "Unless you ask, you won't get the answers that you're looking for."Providers stated that patients need to inform them when they are having side effects or if their medications are not working.Both adolescents and parents suggested that the parent or guardian should leave the room for a portion of the visit.One parent said, "A lot of kids would talk to the doctor, but they won't talk to him if I'm in the room."All parents stated that they had never been asked to step out of the room during appointments.

Controlling ADHD without medication
The second theme was how to help control ADHD without medications.Youth shared strategies that they felt were helpful.One adolescent stated, "Listen to music while you work, it helps you stay focused."When adolescents were asked what has helped them the most to make their ADHD better, the most common response was eating.Specifically, they shared that eating regular meals even in the absence of an appetite helped prevent unwanted side effects from medications.Parents and providers also discussed the importance of eating breakfast and snacks at times when the teen does have an appetite, such as in the morning prior to taking medication.The video emphasizes the importance of regular meals and hydration as a key message based on this discussion.Playing sports and exercising was also discussed by all groups.

ADHD medications
ADHD medication side effects were mentioned by all focus groups.One youth stated, "The medicine affects your appetite, and if you don't eat, it gives you headaches because you haven't eaten all day."Providers also discussed the importance of patients being open about how their medication is impacting them, whether negatively or positively.They specifically emphasized that patients should alert providers of problematic side effects promptly rather than waiting several months until their next scheduled visit.
Parents discussed the challenge of ensuring adherence to medications.One parent said, "They get tired of taking their medications."Some parents shared they trusted their child to take their medication independently, while others discussed counting their child's pills and closely monitoring behavior to determine if the medication was taken.One parent stated, "With the side effects of the medication, she started hiding the medications or pretending like she took them, and she didn't."Key messages focused on communicating about side effects of ADHD medications and taking medications as prescribed.

ADHD and school
Parents, providers, and adolescents all discussed challenges with ADHD at school.Parents especially emphasized the impact of bullying and aggressive behavior.One parent said, "If they know you have any kind of problems, they bully you."Adolescents also discussed their responses to being picked on at school.Providers emphasized the importance of both adolescents and parents communicating with the school and teachers.One provider stated, "The one that a lot of kids I feel like they should ask and don't are things about a school setting-when can I get additional time to complete a test?I've had quite a few that don't know they can get help in school."

ADHD and relationships
All groups discussed the impact of ADHD on relationships.The topic of stigma and feeling different was particularly emphasized.Providers shared that stigma of taking medications for ADHD made it hard for adolescents to follow their treatment plans.As one provider stated, "They think something is wrong with them-so they don't take their meds."Parents particularly emphasized the importance of youth feeling as if they are not different or alone.One parent explained the impact of her child's ADHD on friendships saying, "She's concerned about what her friends think-you know, her friends recognize when she's on certain medications."Therefore, the video includes a key message to emphasize that adolescents with ADHD are not alone.

Talking to your parents about ADHD
Parents, providers, and adolescents all emphasized the importance of communicating openly about ADHD.Providers explained that poor family communication can lead to poor management of ADHD.One provider said, "The parents will say they won't; they're refusing to take their medicine, and the kid's like, well my stomach is hurting every day.There's no communication."Providers also talked about the importance of parents understanding how medications can impact their child's behavior.For example, one provider stated, "Irritability in the afternoons; it's not the child, or it's not the medicine; it's the medicine wearing off.Some people don't realize that."Parents emphasized the importance of adolescents being open about their ADHD and that parents must be willing to listen.Another shared advice for how to better communicate with adolescents was saying "Just listen to the child.Really listen because in between their talking you'll get them to tell."Key messages were incorporated to encourage adolescents to regularly communicate about their experiences and side effects with their parents.

Adolescent advisory board feedback on the sample video produced
The adolescents all stated that the video information was informative and covered appropriate content.Additionally, they emphasized that they felt the video voices and length were appropriate.The major change recommended by the adolescents was to not use puppets and use animation to better cater to the targeted age range of 11 to 17 years.All videos were then produced using animation.

Discussion
Through focus groups with providers, parents, and adolescents we identified six themes that the participants felt were important to help adolescents more effectively engage with their providers during ADHD visits.Through this theoretically driven, patient-centered research approach, we solicited several themes that teens, parents, and providers thought would help teens effectively engage with their provider.After watching the video(s), we hope that adolescents will better understand ADHD and feel comfortable asking their provider more questions during visits to help them better manage ADHD symptoms, medication side effects, school, and relationships with family and friends.Key messages emphasized in the video were that adolescents should not feel nervous or embarrassed talking to the doctor and to be open about their struggles.Focus group participants acknowledged that many teens find it challenging to talk about the impact of ADHD on their lives, including mood, relationships, and physical side effects.The videos provide examples of how youth might initiate these conversations.
Both adolescents and parents agreed it may be helpful to have time alone with the provider, suggesting that more effective communication amongst all parties (adolescents, parents, and providers) is necessary.Providers should consider asking parents to leave the room for a portion of the visit.
Strengths of our study include a multi-stakeholder perspective (adolescents, parents, providers), a racially diverse sample from rural and suburban areas, and inclusion of expert opinion as well as adolescent feedback to modify scripts.This study also has several limitations, including the possibility of selection bias.It is possible that only the most motivated families with ADHD participated in the focus groups.Another limitation is that the severity of ADHD among the adolescents was not recorded.Lastly, only pediatric primary care physicians were included whose opinions may differ from other types of providers.Despite these limitations, this study used a patient-centered research approach to obtain insightful input from providers, parents, and adolescents to determine the themes for a video intervention intended to encourage engagement during adolescent ADHD visits.If adolescents are motivated to ask questions during visits and learn about their ADHD, they may have better outcomes.Future research should examine how watching the videos before a visit impacts adolescent question-asking and provider education about ADHD.Our team plans to use the developed videos in a randomized controlled trial to assess if a pre-visit intervention can improve communication and outcomes in adolescents with ADHD.

Practice implications
These short videos can be watched by adolescents with ADHD before seeing their providers.In addition, the videos are an appropriate educational resource for adolescents with ADHD and their parents that can be accessed outside of the office visit.The video segments are publicly available at http://www.iuveo.org/and on Vimeo as shown in Table 1.Health care providers, teachers, parents, and others should encourage teens to watch the videos.

Table 1 . ADHD video themes and key messages Video Theme Key Messages and Link to Video Segment
It can be difficult for your parents to understand what you're going through.Set a routine to talk to your parents about school and your medication.Support groups and therapists can help start the conversation.Link: https://vimeo.com/518158916/efeb93b584