Perceived Barriers to Medication Adherence in Adolescents and Young Adults With ADHD: Adapting the Customized Adherence Enhancement (CAE) Intervention

Abstract

OBJECTIVE:

While the recommended first line treatment for attention-deficit hyperactivity disorder (ADHD) is medication, poor adherence is still common, particularly in adolescents and young adults (AYAs). This study aimed to adapt Customized Adherence Enhancement (CAE), a psychosocial intervention developed to improve medication adherence in bipolar disorder, to target AYAs with ADHD.

METHODS:

Phase 1 included focus groups with AYAs, caregivers, and healthcare providers who treat AYAs with ADHD (N=19). Prompts included barriers and facilitators of medication adherence, impact of ADHD, and reasons treatment regimens may be difficult to maintain. Focus groups were recorded, transcribed, and thematically coded. Phase 2 included cognitive interviews with AYAs with ADHD to assess acceptability and usability of the intervention (N=6).

RESULTS:

Main themes were AYAs’ perception of ADHD and its negative impact on work, sports performance, and interpersonal relationships. Barriers of adhering to medication were limited access, physiological side effects, difficulty following medication routines, and having comorbidities. Facilitators to medication adherence were having more knowledge about ADHD, benefits from medication adherence, and using external prompts.

CONCLUSIONS:

As untreated or under-treated ADHD negatively impacts morbidity and functioning, intervening early and at a critical stage of development has the potential to change the long-term outcomes of AYAs with ADHD. Results obtained from the present study have informed the adaptation of an existing intervention (CAE) to target AYAs with ADHD. By addressing individualized barriers and facilitators to ADHD medication adherence, the present research has the potential to improve medication adherence in AYAs with ADHD.

INTRODUCTION

Attention-deficit hyperactivity disorder (ADHD) is a neurodevelopmental condition characterized by inattention, hyperactivity, impulsivity, and other deficits in executive functioning.¹ The estimated childhood ADHD global prevalence is between 2–7%, and 78% of diagnoses persist into adulthood.² When left untreated, ADHD can have significant consequences including increased risk of substance use and dependence, dangerous driving, psychiatric comorbidities, physical injuries, behavioral and emotional problems, and decreased emphasis on academic performance and outcomes through the lifespan.³ Adolescents and young adults (AYAs) represent a particularly vulnerable subgroup due to peer influence and propensity for risk-taking behaviors during this critical development phase of life.⁴ Furthermore, intervening during this developmental period has the potential for changing the course of the disorder.

The recommended first-line ADHD treatment includes psychostimulant medication and behavior therapy.¹⁰ Despite the recognized benefits and safety features of medications, there remains notable concern regarding poor treatment adherence, especially among AYAs¹¹ because of the unique demands of their developmental stage.¹² These unique demands are present at the time at which external support systems are decreasing and personal responsibility is increasing, leaving those with ADHD at a particular disadvantage due to the intersection of the disorder and their developmental stage. Likewise, the ADHD treatment rates have been found to significantly decline from the time of childhood into adulthood.¹³ Finally, stimulant medication discontinuation is associated with significantly worse quality of life in AYAs with ADHD.¹⁴

Despite medication adherence being acknowledged as the most modifiable factor for optimizing treatment outcomes in ADHD,¹⁵ there are a paucity of studies targeting the problem.¹⁶ Additionally, a lack of effective communication between professionals and families has perpetuated the stigma surrounding medication as a viable ADHD treatment option.¹⁷ As a result, one of the primary concerns raised by caregivers of AYAs with ADHD is their negative perception of ADHD medication.¹⁸ Similarly, adolescents may be apprehensive about taking medication, often feeling like they can handle their symptoms on their own. An intervention focused on medication management for AYAs with ADHD has the potential to reduce both immediate and future negative consequences.¹⁹ Hence, this qualitative study is part of a larger project whose main goal is to design an intervention, known as Customized Adherence Enhancement for Adolescents and Young Adults with Attention Deficit Hyperactivity Disorder (CAE-ADHD), to enhance medication adherence and optimize treatment outcomes among AYAs with ADHD. The objective of this qualitative study was to identify the barriers and facilitators influencing medication adherence among AYAs with ADHD to inform the adapted CAE-ADHD intervention. The CAE-ADHD intervention was adapted from an existing adherence intervention (CAE) originally developed for adults with bipolar disorder (BD).²⁰ CAE was later adapted for AYAs with BD (CAE-AYA),²¹ as it had illustrated improvements in medication taking behavior in adults with BD.²² The final CAE-AYA treatment manual was used as a starting point for the adaptation to ADHD in the present study (CAE-ADHD). The present study hypothesized that through qualitative efforts (e.g., focus groups and cognitive interviews/usability testing), a previously developed intervention (CAE-AYA) would be successfully modified for AYAs with ADHD.

METHODS

This qualitative study had two phases. In Phase 1, we conducted focus groups with AYAs, caregivers of AYAs, and healthcare providers who treat AYAs with ADHD to assess perceived barriers and facilitators to ADHD medication adherence, as it related to the proposed intervention content. In Phase 2, we conducted individual cognitive interviews with AYAs with ADHD to assess acceptability and usability of the intervention content. Electronic informed consent and/or assent was obtained prior to study procedures. The study protocol was approved by CWRU Medical Center’s Institutional Review Board. Detailed qualitative data are available on request.

Sample and Setting

For both phases, AYAs met the following inclusion criteria: 1) Age range: 16–24 years old, 2) ADHD diagnosis, and 3) If <18 years, able/willing to give written informed assent and have a legal guardian provide written informed consent; if ≥18 years, able/willing to provide written informed consent. AYAs were excluded if 1) Unable to receive care in an outpatient setting due to illness severity, 2) Documented or suspected IQ<70, 3) Unable to participate in study procedures. Inclusion criteria for caregivers in Phase 1 were: 1) ≥18 years old, 2) Caregiver; when caregiver of AYA age 18–24, AYA must give permission to include caregiver, and 3) Willing/able to give written informed consent. Providers were included if: 1) ≥18 years old, 2) Physician, psychiatrist, or psychologist that cares for AYAs with ADHD, and 3) Willing/able to give written informed consent. Caregivers and providers were excluded if they were unable to participate in focus groups and unable to provide written consent. In addition, all participants had to be fluent in English. Categories used to collect race/ethnicity were consistent with Census Bureau questionnaires in accordance with guidelines provided by the U.S. Office of Management and Budget (OMB). Race categories were: White/Caucasian, Black/African American, American Indian/Alaska Native, Asian, Native Hawaiian/Other Pacific Islands, and Other/Don’t know/Prefer not to answer and were obtained via self-report. The racial characteristics for study participants are as follows: AYAs included 7 Caucasian (77.8%) and 2 Black American (22.2%) participants for Phase 1, and 5 Caucasian (83.33%) and 1 Black American (16.67%) participants for Phase 2. Parents included 4 Caucasian (80%) and 1 Black American (20%) participants while providers included 6 Caucasian (100%) participants.

Phase I

A semi-structured focus group interview guide was developed by a multidisciplinary team made up of a child and adolescent psychiatrist, a clinical psychologist, and a pediatrician/qualitative researcher. The guide explored AYAs, practitioners, and caregivers’ views on barriers and facilitators to medication adherence, knowledge surrounding ADHD, medication routines, communication, and substance use/risky behaviors.

Focus groups were held virtually and led by one of the authors (MM, JBL, or EC) following the guide. Focus groups lasted 60–75 minutes, included between 2–4 AYAs or 4–6 providers/caregivers, and were recorded for later transcription. Breakout rooms were used for a portion of the provider/caregiver groups to separate caregivers and providers to obtain unbiased feedback from each stakeholder group. Two of the authors (EC, SA) transcribed the focus group recordings. In doing so, all private health information (PHI) was removed for de-identification and responses were labeled as coming from a practitioner, caregiver, or adolescent. To ensure consistency and accuracy, coding was completed independently by three of the authors (EC, SA, AC) following an a priori framework based on a directed thematic analysis. Then, transcripts were analyzed using a content analysis approach (a commonly used approach in qualitative research),²³ allowing for the transcripts to yield themes continuously, compare constructs and look at the relationships between constructs. Further, discrepancies were resolved through discussion and/or revisiting the data with one of the co-authors (KKN), who is an experienced qualitative researcher.

Phase II

Six AYA participants completed the cognitive interviews, comprised of four AYAs who also participated in Phase 1 and two who did not. After completing a demographics form, a trained facilitator guided each participant through 1–2 modules of CAE. Usability was tested via cognitive interviews by having participants verbalize their thoughts about the content and presentation as the interventionist simultaneously reviewed the content and shared the participant-facing materials for each of 5 sessions. The participants were also given a copy of the manual. Each session was reviewed by 1–2 AYAs, focusing specifically on the acceptability, comprehensibility, and relevance of each CAE session. Cognitive interviews lasted between 60–75 minutes to ensure participants’ attention was maintained, and burden was minimized. In addition to open-ended feedback, participants were specifically asked: Is the content relevant for people in the age range (16–24)?; Was the language appropriate for teens and young adults?; Was the material engaging?; How long should a session last?; How visually appealing were the forms used?, and if there was anything in particular that they would improve or suggest adding.

Procedures

The study used an open system of recruitment that prioritized self-referral and clinician referral and consisted of IRB-approved flyers posted in locations where AYA might see them (health center waiting rooms, coffee shops/restaurants, bulletin boards on school campuses), and presentations to local and regional clinicians who provide care to AYAs with a request/solicitation for referrals. Participants who met eligibility criteria were contacted by a trained research assistant and provided a thorough overview of the study procedures, including risks and benefits. Consent was conducted remotely over videoconferencing with REDCap/electronic written consent/assent. Focus groups were conducted via Zoom and individuals who were enrolled but unavailable for group sessions completed individual interviews using the same prompts.

RESULTS

Phase 1: Focus Groups

19 participants completed focus group sessions. All the participants were from a blend of urban/suburban/rural areas of Northeast Ohio. Separate sessions were conducted for AYAs with ADHD and caregivers/providers of AYAs with ADHD. We conducted 2 focus groups for AYAs and 2 for caregivers/providers of AYAs with ADHD. Overall, participants included 8 AYAs (62.5% Female, M_age=19.4, SD=2.44), as well as 6 providers and 5 caregivers (see Table 1 for demographic characteristics). One of the caregivers was also a provider. Through the collection and analysis of this data, the main themes extracted were: 1) Impact of ADHD on AYAs; 2) Barriers to ADHD treatment adherence; 3) Facilitators to ADHD treatment adherence; 4) Strategies to improve AYA/provider therapeutic relationship; and 5) Perceptions about substance abuse risks and risk-taking behaviors among AYAs with ADHD.

Table 1.

AYA Demographics Phase 1 Phase 2

Variable	N	%	N	%
Gender
Female	5	55.6	3	50
Male	4	44.4	3	50
Total N	9		6
Race
Caucasian	7	77.8	5	83.33
Black American	2	22.2	1	16.67
Ethnicity
Non/Hispanic Latino	0	0	0	0
Level of Education
<High School	1	11.1	2	33.33
High School	2	22.2	0	0
Some College	5	55.6	3	50
College Degree	0	0	1	16.67
Graduate Degree	1	11.1	0	0
Household Income
$0–35K a year	2	28	0	0
$76–150K a year	1	14	1	20
$ ≥ 150K a year	4	58	4	80
Age	Mean	SD	Mean	SD
	18.56	1.51	19	2.83
Age Dx ADHD	11.44	4.16	13.5	5.28

Parent Demographics (Phase 1)
Variable	N	%
Gender
Female	5	100
Male	0
Total N	5
Race
Caucasian	4	80
Black American	1	20
Ethnicity
Non/Hispanic Latino	0	0
Level of Education
<High School	0	0
High School	0	0
Some College	0	0
College Degree	2	40
Graduate Degree	3	60
Household Income
$76–150K a year	1	20
$ ≥ 150K a year	4	80
Age	Mean	SD
	54.75	3.77

Provider Demographics (Phase 1)
Variable	N	%
Gender
Female	4	66.67
Male	2	33.33
Total N	6
Race
Caucasian	6	100
Black American	0	0
Ethnicity
Non/Hispanic Latino	1	16.67
Type of Provider
Child Psychiatrist	2	33.33
Adult Psychiatrist	2	33.33
Pediatrician	1	16.67
Child Psychologist	1	16.67
	Mean	SD
Age	49.33	8.02

Note. Phase 1 included focus groups, while Phase 2 included cognitive interviews (N=4 participants that also participated in Phase 1). Those not included in the “Household Income” description, but in the total N chose “Prefer not to answer” for the income item in the demographics form.

Note. MH stands for mental health.

Major Theme 1: Impact of ADHD on AYAs

AYAs with ADHD expressed that ADHD has impacted their life in different ways including their work and sports performance, peer relationship and friendship, and self-esteem.

Major Theme 2: Barriers to ADHD treatment adherence

The primary barriers to ADHD treatment identified by AYAs with ADHD, caregivers, and providers of AYAs with ADHD were level of impairment and co-existing conditions, social and environmental factors, limited access, and treatment concerns such as adverse physiological effects of medication (e.g., headaches, stomachaches, decreased appetite, and emotional dysregulation) (see Table 2).

Table 2.

Major Theme 2: Barriers to ADHD Treatment Adherence in AYAs with ADHD

Theme	Subtheme	AYAs	Caregivers	Providers	Illustrative Quotes
Level of Impairment and Co-existing Conditions	Difficulties with organization skills and routines	√			“(…) the back and forth of remembering and not remembering or having my mom to remind me to take it and if she’s not there to remind me, I just completely forget and it’s just that kind of cycle, that’s kind of the hassle.” “(…) my mom has to remind me to take it. So, she gives it to me in the morning, I really don’t know what I’m going to do when I’m on my own.” “I set an alarm that has a label on it. Usually when I wake up in the morning, is when I take my medication but even then, factors come in like if I didn’t get much sleep last night. Then, when I wake up, get out of bed it’ll be a little harder to pay close attention to what I’m doing, so I may either take my night meds instead of my morning meds, or vice versa, or I just straight up forget cause I’m so tired.”
	High levels of stress	√			“I think stress definitely impacts the whole forgetting thing. If a lot happened one day like that was just too much for me. Then it can cloud up my brain, and part of that can include remembering to take my meds.”
	Co-existing conditions			√	“… then that child falls apart and they usually present as depressed, suicidal, whatever. They don’t present as you know but you see that problem has been brewing for a long time.”
	Severe impairments			√	“And especially if the level of impairment is that significant, like for example, we’ve shared patients that are young adults, and they can’t find their way out of a wet paper bag on a sunny day and now we’re tasked to teach them those skills. My energy is minimal compared to when all that stuff has been deployed early and its part of the momentum. You know, of the treatment package.”
	Lack of Autonomy			√	“I find sometimes in those situations where the parent may be a little overbearing or has really strong opinions about what should be happening.” “So, generally, when the kid comes to my office (…) they’re really upset, because it generally feels like something oppressive is being done against their wishes. I’d call it veterinary psychiatry.” There’s often tension between the parent and the child and sometimes that leads to a child who doesn’t want to say anything to me. Even if I do throw the parents out.”
Social and Environmental Influences	Stigma/negative environment	√		√	“There’s a big generational disconnect between my generation and older generations in terms of like mental health awareness.” “I was raised that meds are, you know, not normal.”
	Peer/social influence	√		√	“It swims in a notion of negative feedback from peers, from teachers, and it ranges from the several to the outright, you know, berating and ridicule, right but the rolling of the eyes.” “… sometimes their friends say: Hey I like it when you’re off your medicine more than when you are on your medicine. And I think that leads to them not taking it.” “I remember I told one of my friends, who was a girl, and she’s like, oh, what is that and she didn’t really know.” “When people don’t understand that it’s hard to get stuff done.” “Parents often need a lot of coaching in what they’re gonna have to teach their child.” “We all know that when we’re sick or not feeling well we take medication to help us feel better so it’s really trying to talk about medication in a more positive light.”
Limited Access	High out-of-pocket co-pay	√			“I would pay like seventy dollars a month out of pocket for it (…) I really want to keep taking this like cause I’m trying to get the money.”
	Limited insurance coverage	√			“… for a while it was the money because the insurance that I used to have didn’t cover for the medication”
Treatment Concerns	Lack of/limited medication response	√	√		“It was a lot of I don’t know, I take the medication in the morning, like when I was first there, and then I’d be like I don’t feel like this is working, let me take another one, like I need to feel like I need to be a little more focused.” “I struggle with routine, but I don’t think I’ve really found something yet that works.” “I’m not sure she or I feel that it’s enough. She’s still anxious and schedule is all over the place. She’s just started college.”
	Concerns about adverse effects	√	√	√	“When I first started, I didn’t like it because I was extremely emotional, and my emotions are all over the place, and I couldn’t control my emotions.” “Headaches, stomachache, too. Just because of my medication I’m very sensitive to things.” “I would not eat any lunch or anything, I will go, and it will be days where I’ll just like not want to eat anything, and usually I’m the person that would eat, or I would eat at night, which is bad.” “Saw some negative aspects, felt like it made him a little too mellow. And he was more outgoing and open to new social things, as he got older.” “Younger crowd tends to become averse mostly because of the side effects of the medication.” “But they feel as if it (medication) makes them too emotionally restricted.”
	Withdrawal effects	√			“I’d forget to take on for a day or a couple of days, and then I’d feel the really negative withdrawal effects, and just feel really bad vertigo and whatever so from the antidepressants, so I kind of struggled with that.”

Major Theme 3: Facilitators to ADHD treatment adherence

All the participants expressed that facilitators to ADHD treatment adherence include having good organizational skills and/or external prompts, having knowledge about ADHD, experiencing benefits from medications, and having good support from providers, parents, and community (see Table 3).

Table 3.

Major Theme 3: Facilitators to ADHD Treatment Adherence in AYAs with ADHD

Theme	Subtheme	AYAs	Caregivers	Providers	Illustrative Quotes
Having good organizations skills	Routines	√	√	√	“… establishing routine was key. I would (be) doing the same thing: wake up, get to the shower, take the medication, brush my teeth, eat breakfast. All of a sudden, I’m out the door and there you go. That was what was helpful for me.” “Habit of taking it before class, doesn’t matter when.” “I think the routine and I don’t even have to remind her anymore.” “Making something contingent on taking it, once you take your medicine that’s the moment, I give you the car keys that day. Or, put a sign on your door before you leave, so to open that door you have to take your medicine.” “For my patients, it’s often just they don’t really have good habits and routines so I always say so what can you tie this to?”
	Electronic external prompts (e.g., alarms, apps)	√	√	√	“We all got iPad and apple pencils, so I’m using an app called notability. (…) I use that for school, that’s where I keep my plan or my schedule, and that makes it super easy to always carry my iPad around.” “Reminder apps - there’s even a new one on the iPhone.” “I think if there is some new tech that is coming out. I’d be interested to see what it is, if it’s any better than like my alarm thing. Cause my alarm thing works pretty well but if they can somehow fix the issue of, I have this thought that pops up every now and then in my head like my parents are probably so tired of hearing this annoying noise from my phone. Every day, every morning, every evening to take my medicine. If that’s a potential fix I might definitely look into it.” “Usually just set an alarm with my phone to remind me” “We always schedule the appointment before one appointment ends. If they’ve had a history of having trouble remembering their appointments, I’ll kind of say: okay, so you’re gonna put that in your phone, I will wait as they’re putting it in their phone. But they also get reminders from us.” “My 17-year-old actually already uses a lot of alarms and reminder systems through his phone. So, he has multiple ones that go off every day from everything to put to use your topical acne cream, and he does it all himself with that.”
	Calendars	√			“I’ve been keeping a pretty strict calendar. Having a planner and writing everything down has been very essential, and it’s like freeing up space in my head and allowing me to be more successful.”
	Pill containers	√	√		“The biggest thing is the weekly pill container. I have 3 of them, so I’ll go in and set out the whole month or 3 weeks’ worth of pills.” “When (…) I’m going to a friend’s house or sleep over or at least late enough where I’ll take my night dose, I usually take my whole pill case with me and if I notice that I forgot one dose in there then I take it if I need to.” “We’ve had the pill containers for years, she usually needs to take something after school or during the day, just to kind of get her through the rest of the school day.” “We have a weekly pill box, and when he went out to the camp we had a two-week pillbox, an AM and PM. So that’s been pretty good but that’s part of it, is because we’re so religious with, because of the seizure medicine, too.”
Having knowledge about ADHD		√			“From my parents, from the doctor that diagnosed me. I know I’ve looked at a lot of YouTube videos about it, specifically a channel that’s dedicated to ADHD, and how to live through it or something like that.” “I think the biggest thing is helping people understand how their brain works, and how I’ve been able to learn about myself and learn how I function. And that’s been really helpful, so I think just explaining what is actually going on, and kind what I mentioned before for the medication, explaining how the medication helps, and how it works is just really big and really important for being able to help with ADHD.”
Experiencing benefits from adhering to medications	Improved focus and impulse control	√	√		“Time is a lot slower when I’m not on my medication, and I’m sitting there in lecture, and I’ve read some studies where they do some tests, and people with ADHD do have a worse perception of time than people that don’t have it. And I did notice this in myself like if I take my medication I can sit there in the lecture, and I don’t look at my watch. But if I don’t take it, I’m looking at my watch every like minute. It’s a lot harder.” “Stimulants, they can really help a lot of people focused and kind of be more goal oriented and kind of gets things done.” “I sometimes I notice (…) when I don’t take my medicine, I’m more impulsive, a lot more impulsive.” “She was all over the place, you know, too excited. Then the medicine would make her, you know, calm and kind of like to me it felt like you know, calm a little bit.”
	Improved work and school performance	√	√		“It is one of the first questions she asks me when she notices I’m out of it. Usually my workflow, just being able to accomplish what I hope, to like goes down by a lot. Sometimes nothing gets done, it’s a drastic change.” “ I think it definitely does its job especially in school. I mean I’ve only been taking medications for about a year and a half now. So, I went all through most of the high school. But toward the end, when I did start taking it, I definitely notice huge changes, and I was more excited to learn, and I don’t think I’d be able to pay attention during an hour and half lectures now without my medication. I couldn’t imagine going to college without it.” “(…) when I got into high school it was really bad, and I almost didn’t graduate, and when I started taking the stimulant, it helped tremendously…” “He noticed his spelling tests were not only better scored, but the handwriting was completely different.” “If they’re not on a stimulant, they’re gonna get suspended from school, they’re going to get into fights. It’s going to be worse.”
	Improved family relationships	√			“… with my mom, I could definitely listen to her a lot better when she was talking to me, and she noticed a huge difference, too. She said I was calmer, wasn’t interrupting what she said as much.”
Having good support	From providers	√	√		“Occasionally if I’ve had questions about something ADHD related, she’s [provider] always happy to talk about it. We meet once every 3 months, and she’s been extraordinarily helpful. Also, in regard to the Adderall shortage, if I needed to switch my prescription from 30 mg ER to 2 times 50 ER, she’ll always very responsive.” “I think if there is a solution? I think it’d have to come from the doctors, just because they sort of have the authority, or at least knowledge background to share that with the parent, and if anybody, the parent will probably be more likely to trust them.” “(…) my son has a great relationship with his psychiatrist. So, it is a good relationship and so he feels very comfortable there.”
	From family members	√	√		“… when I was at a foster home, my foster mom would take the meds and set it on the table. And I’d have to take it before I go to school. She would sit and watch me take it and that helped.” “We have a very healthy relationship. I speak with my mom regularly at school, my dad does not quite so much. I’m close with both and I feel like between the 2 of them if there’s ever something that I want to talk about, I can always go to one of them at least about it.” “My partner is extremely understanding. He takes his time with me, and he realizes that it’s not me just being lazy. So sometimes doesn’t want to do anything, but he understands that most of it is ADHD. I have a strong support system within him.” “In the beginning, I had to do a lot of constant pounding her to stay on top of things, and then eventually she just developed that habit and routine.” “I think she’s pretty comfortable talking, but I think it just depends on the topic. But talking about her medicine, and how she’s feeling and how it affects her. If it’s working, if it’s not working it’s kind of easier now that she can tell us instead of relying on the teacher’s observation, or me watching her at home.” “You just need to write out the outline, (…) my sister lives in South Carolina and she’ll screen share and just be there, she’s doing her task at home every night and moving the cursor to let her know she’s there, but you know that kind of lets her know that somebody’s there trying to keep her going.”
	From school staff		√		“The challenges that she would encounter at school we always got over by having constant communication with teachers with the principal with the nurse like there was always a conversation happening positive, and negative so that helps as well.” “He goes to a school where all the kids have some learning interventions happening.”
	From ADHD community & friends	√			“(…) most of them have ADHD, we’re our own little circle of ADHD’ers, they definitely understand. We send each other TikTok’s about ADHD all the time, every day. Also, we see TikTok’s or videos that are self-help if you have ADHD. So, we try to help each other out. So, they definitely understand.” “A lot of my friends have ADHD. Kind of funny that I’ve been drawn to people who think similar way, have similar struggles (…) I feel like it’s really hard to understand what it’s like, so my friends have been supportive and try their best to understand.” “With many friends we’ll be able to kind of understand each other without even talking. I’ll just look at my friend when we’re doing homework, see the expression on her face. I know exactly how you’re feeling right now, and so that just is nice to have people who can understand what you are struggling with.”

Major Theme 4: Strategies to Improve AYA/Provider Therapeutic Relationship

AYAs with ADHD recognized that having good parental support and a positive relationship with their provider can improve treatment engagement. Providers of AYAs with ADHD reported that some of the strategies to improve AYA/provider engagement included helping with scheduling appointments and guiding AYAs through the medical process and appraisal of treatment (see Table 4).

Table 4.

Major Theme 4: Strategies to Improve AYA/Provider Therapeutic Relationship

Theme	Subtheme	AYAs	Caregivers	Providers	Illustrative Quotes
Theme 4: Strategies to Improve AYA/Provider Therapeutic Relationship	Good parental support	√			“My mom does attend most of my meetings… my mom is mostly always there.” “When I was first getting diagnosed, my mom was the one that I went to for it, then she kind of told me I have ADHD too, and so did your father (…) She was the one that set up the appointment to get me diagnosed, and when I told her I wanted to start taking medication, she was the one that kind of set that up for me. But then it was around the time when I was moving out, going to college, and so I think she just kind of assumed I was comfortable without her being there…”
	Positive relationship with provider	√			“I feel like my therapist is pretty easy to communicate with him, because I think he mentioned that he has ADHD as well.” “She’s always happy to talk about it. We meet once every 3 months and she’s been extraordinarily helpful.” “With my psychiatrist? I have known her since I was in third grade, so we have a pretty good relationship.”
	Including and guiding AYAs through medical process and appraisal of treatment			√	“… there are some parents who, for the appointments and for picking up the prescriptions, have the teenager come with them to do everything. So, they’re familiar with how everything operates, and then, when the appointments were around, rather than the parents answering the questions the first time around, how things are going, parents put upon the senior in high school to initiate the appointment.” “… I think the other thing I really try and do is talk to the kid first. Every visit I always try and start with the kid and kind of ignore the parent for a while, not ignore them but start out talking to the kid.” “I think part of it is making sure that they understand as much as they can about what ADHD is, (…) and some of the positivity that come from it. (…) And make sure they understand how medicine works and we’re not trying to change personalities and we’re trying to help some of the obstacles to help them be happy and successful.”
	Scheduling appointments			√	“We always schedule the appointment before one appointment ends (…) But they also get reminders from us.”

Major Theme 5: Perceptions about substance abuse risks and risk-taking behaviors in AYAs with ADHD

AYAs’ perceptions about substance abuse varied from people using drugs as a coping mechanism to calm down, or as a temporary fix to consuming drugs due to being in environments where substance use is highly concentrated (e.g., college). Providers reported that some AYAs with ADHD will consume or vape some substances such as marijuana to keep them focused or to manage their ADHD symptoms. Also, providers noted that substance use will cause reduced motivation and a negative impact on memory. Further, caregivers of AYAs with ADHD reported not being aware of their children consuming substances or finding this out by accident (see Table 4).

Phase II: Individual Cognitive Interviews

Cognitive interviews of the CAE-AYA modules revealed that the content was relevant for those with ADHD aged 16–24 years, and that it was a comfortable amount of content. The common consensus was that sessions should last for about an hour and that the content was easily comprehensible. Further, AYAs noted suggested the importance of incorporating breaks to ensure proper focus on the material. Further recommendations included: sharing lists of symptoms while discussing the material, including more colorful imagery to maintain attention, and to engage the participants in the material frequently (e.g., comprehension checks, interactive worksheets). AYAs also suggested including information on the triggers of worsening ADHD symptoms. Modifications were made to the modules in accordance with the feedback, for example, a “STOP and THINK” exercise was deemed to be inappropriate for the age group and as a result it was substituted with the “I.D.E.A” exercise (a worksheet that allows participants to identify a problem, define possible solutions, evaluate those solutions, and make a final decision). Additionally, more graphics were added to the materials, language was modified to match that of the adolescent’s knowledge of ADHD, and a “triggers” worksheet for adherence lapses was added.²¹

DISCUSSION

The underlying goal of the current study was to modify an existing adherence intervention, originally developed for adults with BD, for AYAs with ADHD.²¹ To this end, the team conducted a qualitative study of the perceived barriers and facilitators to ADHD medication adherence from patients, caregivers, and providers, and is to our knowledge, the second study to date to investigate such barriers from a broader perspective than solely of patients themselves.²⁴ By assessing a variety of stakeholders in ADHD treatment, there was a broad spectrum of experience and perceptions of ADHD management.

Our qualitative data illustrate that patients collectively expressed that ADHD negatively impacted their work/extracurricular performance, their relationships with peers, and self-esteem. Perceived barriers to ADHD medication adherence reported across patients, caregivers, and providers were patients’ level of impairment, social/environmental influences, access to healthcare, and concerns regarding treatment. The finding that social/environmental influences and access to healthcare are perceived barriers to medication adherence validates previous research suggesting that limited transportation services and mental health providers in the area are associated with a decrease in ADHD medication adherence.²⁵

Comparable to previous research, AYAs in our study identified adverse physiological effects of medication (e.g., headaches, stomachaches, decreased appetite, and emotional dysregulation) as primary barriers to ADHD medication adherence. Further and consistent with the literature, AYAs reported that withdrawal symptoms experienced when missing doses also served as a barrier to medication continuance. Specifically, in a prior qualitative study, parents and AYAs with ADHD conveyed fears of physiological effects, medication misuse or diversion as being deterrents for beginning medication treatment.¹⁸ Authors also found that once medication treatment had been initiated, parents reported difficulty in being able to effectively weigh the costs (e.g., physiological effects) and benefits (e.g., functional improvements) of medication.¹⁸ Further, our study adds to the current literature in that we identified co-existing conditions as a potential barrier to medication adherence. The present literature offers mixed findings regarding the impact of comorbid disorders on medication adherence in AYAs with ADHD. For example, a few studies have reported that child comorbidities, particularly oppositional defiant disorder (ODD), contribute to poor ADHD medication adherence.²⁵ However, other research suggests that comorbid disorders such as ODD, depression, and anxiety predict higher levels of medication adherence in ADHD.²⁵

Conversely, perceived facilitators reported across patients, caregivers, and providers were having good organization skills and/or external prompts, ADHD knowledge, and having a strong support system. Consistent with previous research,²⁵ our results demonstrated that external prompts such as pill reminder boxes, app usage, and alarms to maintain organization may serve as a facilitator to medication adherence. In addition, our results support prior research in that both AYAs with ADHD and caregivers reported that observed benefits in focusing, impulse control, and academic/occupational improvement served as facilitators to adherence. A prior study illustrated the same effect regarding improvements in learning, social behavior, and overall academic performance.²⁶ The opposite has also been reported; namely, that minimal positive effects observed from medication taking served as a barrier to medication continuance.¹⁸ Further, patients’ lack of knowledge of ADHD has been found to negatively impact medication adherence.²⁷ Lastly, and across groups, having good social support was identified as a facilitator of adherence. This is consistent with findings from previous focus groups conducted with caregivers, clinicians, and family navigators of children with ADHD that having support from clinicians, caregivers, school personnel, family, and friends was key in facilitating medication adherence.²⁴

Both providers and AYAs highlighted the notion that another potential barrier to medication adherence may be poor patient-provider relationships. Further, strategies to improve AYAs’ therapeutic relationships with their providers were identified by AYAs and providers of AYAs, independently. AYAs recognized that having good parental support and a positive relationship with their provider improves treatment engagement. This notion supports prior research stating that ADHD medication adherence increased when treatment was administered by a specialist (e.g., child psychiatrists rather than primary care providers).^25,28 Furthermore, a systematic review suggests that many primary care physicians report a lack of awareness, understanding, experience, knowledge, and sometimes even believing in the ADHD diagnosis.²⁹ Similarly, a qualitative study examining focus groups with general practitioners found that they were often uncomfortable with diagnosing and treating ADHD, due to a lack of time, knowledge, and experience with ADHD.³⁰ In our study, providers reported that AYAs may benefit from support with scheduling appointments, being included/guided through the medical process, and sharing treatment attitudes. These findings align with prior research that highlights the necessity for patient/family education in the treatment of ADHD. Namely, that increased caregiver knowledge, receiving an ADHD diagnosis based on a thorough diagnostic process, and comfort with treatment plan have all been found to increase medication adherence.²⁵ Furthermore, maintaining an effective patient/provider relationship requires the development of effective communication to address the impact of stigma, alongside other barriers to adherence.¹⁷

Lastly, AYAs’ perceptions of substance use varied from using substances to cope or as a in response to environmental cues or social pressure. These findings support the self-medication hypothesis in that adolescents report using substances due to the immediate effects that the substances have on their mental state.⁷ Additionally, impulsivity in conjunction with environmental cues may lead to increased substance use in those with ADHD.⁵ Further, adolescents often reported the occurrence of vaping nicotine, supporting previous studies that suggest nicotine use in ADHD occurs because of its effects on attention and executive functioning.⁸ Similarly, providers reported that AYAs consume or vape some substances (e.g., marijuana) to keep them focused or to manage their ADHD symptoms. Conversely, caregivers reported being unaware of their children’s substance use or inadvertently finding out about it.

Limitations & Future Directions

While the findings have implications for informing treatment delivery for AYAs with ADHD, there are a few limitations which must be noted. Given that poor medication adherence was not an inclusion/exclusion criterion for the study, there may have been varying levels of medication taking behavior in the sample. To combat this issue, and target individuals that are in the highest need of intervention, future research should consider more strict medication adherence criteria for inclusion in trials. Additionally, close collaboration between physicians and study teams would facilitate interventions reaching those individuals who may benefit most from such an intervention. Further, the sample of AYAs, caregivers, and providers remains small and may not be representative of their respective, broad populations. As the present research relied on recruitment efforts from staff at one academic medical center, future research should target a larger community sample to increase the diversity of the sample and thus the generalizability of the results. Additionally, it is important to note that this intervention focuses specifically on improving medication adherence, and does not necessarily address all aspects of ADHD management. Despite its limitations, the present work illustrates that using qualitative methods to examine barriers and facilitators to adherence from a variety of stakeholders in ADHD treatment can provide beneficial insight when adapting and modifying an intervention specific to medication adherence.

Conclusion

The information gathered in this study helped inform the adaptation of an existing intervention (CAE) to be relevant, understandable, and acceptable to the target population of adolescents and young adults with ADHD (CAE-ADHD). Taken together, the present research has the potential to improve adherence outcomes in AYAs with ADHD by addressing individualized barriers and facilitators of ADHD medication adherence. The long-term goal of the modified CAE for AYAs with ADHD is to improve medication adherence, ADHD symptoms, and quality of life.