Video Abstract
Attention-deficit/hyperactivity disorder (ADHD) is a common neurodevelopmental condition in children. Although ADHD is treatable, barriers remain to engagement in treatment, especially among socioeconomically disadvantaged and racial and ethnic minority families. Our goal was to examine the process by which families engage in ADHD treatment and to identify targets for an intervention to improve engagement in care.
We conducted in-depth semistructured qualitative interviews with 41 parents of diverse youth aged 3 to 17 years old in treatment of ADHD at an urban safety net hospital. Parents were asked about their journey through diagnosis and treatment, community attitudes about ADHD, and other factors influencing treatment access and decision-making. Transcripts were analyzed by using thematic analysis.
Of children with ADHD, 69.2% were male, 57.7% were Black or African American, and 38.5% were of Hispanic, Latino, or Spanish origin. Parents were 92.7% female, were 75.6% English speaking, and had a median income of $20 000. Parents described 6 stages to the process of engaging in care for their child’s ADHD, which unfolded like a developmental process: (1) normalization and hesitation, (2) fear and stigmatization, (3) action and advocacy, (4) communication and navigation, (5) care and validation, and (6) preparation and transition. Barriers often occurred at points of stage mismatch between parents and providers and/or systems. Difficulty resolving an earlier stage interfered with the progression through subsequent stages.
The 6 stages framework could be used to develop new strategies to measure engagement and to design family-centered interventions to facilitate engagement in ADHD treatment.
Attention-deficit/hyperactivity disorder (ADHD) is a common, treatable pediatric condition, but racial and/or ethnic minority families experience disproportionate barriers to treatment engagement. Beyond identifying discrete barriers to care, the field lacks a family-centered framework to guide development of ADHD engagement interventions.
Using qualitative methods, we discovered 6 stages of engagement in ADHD treatment described by diverse parents. The stages unfolded like a developmental process, hampered by stage mismatch between parents and providers. Difficulty resolving earlier stages interfered with navigating later stages.
Attention-deficit/hyperactivity disorder (ADHD) is one of the most common pediatric health conditions, affecting between 8% and 12% of school-aged children.1,2 ADHD is associated with significant dysfunction,3–7 and its burden can be particularly devastating for socioeconomically disadvantaged and racial and ethnic minority children, who already face high rates of educational underachievement, overrepresentation in the justice system, and low economic mobility.8–10
Although there are many treatment options for ADHD that improve lifelong outcomes,11–18 treatment use and adherence, often collectively referred to as engagement in care,19 remains low in certain populations and not optimized for many patients.20–25 Engagement in ADHD treatment is particularly challenging for low-income and racial and ethnic minority families, who have less service use, higher treatment dropout, and greater loss to follow-up than other families.26–32 Yet there are few studies that examine the process by which families engage in treatment33,34 and few well-tested interventions to improve engagement in ADHD care.
We conducted in-depth interviews with diverse, urban parents whose children were in treatment for ADHD at our safety net hospital to understand how these families came to engage in treatment for their children. We used qualitative methods to explore how and why families are delayed or deterred from seeking treatment from their perspective and to identify possible targets for a family-centered intervention to facilitate engagement in ADHD care.
Methods
Setting and Participants
Legal guardians of children aged 3 to 17 years old in treatment of ADHD were recruited by clinician referral and waiting room advertisements from pediatric clinics at Boston Medical Center (BMC) between June 2018 and October 2019. BMC is the largest safety net hospital in New England, serving predominantly low-income and racial and ethnic minority patients from diverse cultural backgrounds. We recruited diverse families (English, Spanish, or Haitian Creole speaking) from a variety of pediatric treatment settings at BMC to increase the variability of perspectives. Participants were excluded if their child had comorbid autism, psychosis, or intellectual disability because these conditions would change the treatment focus. Potential participants were phone screened for eligibility and scheduled for an in-person study visit.
Data Collection Procedures
The study was approved by the Boston University Medical Campus Institutional Review Board. Written informed consent was obtained from parents by a research team member. Single semistructured in-depth interviews lasting 45 to 60 minutes were conducted alone with participants (without their children) by trained research staff who were fluent in the parent’s preferred language. The interview guide (Supplemental Information) included open-ended questions to explore the journey of ADHD diagnosis and treatment, community attitudes about ADHD, and other factors influencing treatment access and decision-making. We used interview data to adapt questions and prompts iteratively. After the interview, parents completed a quantitative questionnaire, based on items from the National Survey of Children’s Health35 and the Child Behavior Checklist,36 collecting sociodemographic and treatment information to measure child psychiatric symptoms. Interviews were conducted until theoretical saturation was reached.
Data Analysis
Interviews were audio recorded, transcribed verbatim, translated to English if applicable, and reviewed for accuracy. Transcripts were analyzed using thematic analysis37 to identify patterns across participants through data familiarization, coding, and development of themes (broader shared meaning across participants). The first 5 transcripts were reviewed independently by 3 authors each and then discussed by the research team (AES, JS, JKL, NZ, TB, MR, SH, KR, OB) to develop an initial codebook. Interviews were then selected, in random order, to each be coded by 2 of 3 authors (NZ, JKL, JS) independently and discussed to resolve discrepancies and revise the codebook, including adding new codes. After 2 authors (NZ and JS) reached an intercoder reliability (Cohen’s κ) of 81% (exceeding our predetermined 75% threshold38 ), the remaining interviews were each coded by 1 of 2 authors, double-coding after every 5 interviews to check that intercoder reliability was maintained. The research team (AES, JS, JKL, NZ, TB, MR, SH, KR) then met to discuss the relationships between themes and patterns in the data through axial coding.39 We used NVivo 11 software40 for data management.
Results
Sample Characteristics
Of 130 potential participants screened, 26 were ineligible, 63 declined or could not be reached for their study visit, and 41 consented and completed interviews in English (n = 31; 75.6%), Spanish (n = 9; 21.9%), and Haitian Creole (n = 1; 2.4%). Parents were 92.7% female and had a mean age of 40.8 years (SD = 7.6). English was the primary language spoken at home for most participants (75%), but 41.8% were born outside the mainland United States, including in Puerto Rico (23.5%), Mexico (17.7%), and 7 other countries. Approximately half of the parents (51.8%) had received some postsecondary education, and the median income was $20 000 (Table 1).
Children with ADHD ranged in age from 3 to 17 years (mean age 11; SD = 3.3); 69.2% were male, 57.7% were Black or African American, 38.5% were of Hispanic, Latino, or Spanish origin, and 80.5% were publicly insured. The majority had comorbid psychiatric and/or learning disabilities, and more than half had asthma (68.8%). Almost all children had a lifetime history of receiving medication (97.6%), behavioral therapy (87.7%), and school accommodations (90.2%) for ADHD (Table 2).
Six Stages of Engagement
Parents described 6 stages in the process of seeking care for their child’s ADHD (Fig 1). Parents often described stages in a predictable order as they journeyed through diagnosis and treatment but also described some overlap among stages, deviations from the usual order, and variation in the time spent in each stage. Parents described the navigation of stages as an interplay between themselves, their families, communities, and the systems serving their child (health care, education). Barriers often occurred at points of stage mismatch between parents and providers and/or systems (ie, with parents having progressed to a later stage ahead of providers or vice versa). Successful transition through each stage facilitated progression through subsequent stages (eg, accepting), but unresolved conflicts in earlier stages interfered with subsequent stages (eg, reluctant). In Tables 3 through 8, we categorize participant quotes by stage, with subthemes representing the processes involved within each stage.
Stage 1: Normalization and Hesitation (“He’s Gonna Grow Out of It”)
In the first stage, parents realized their child’s symptoms were not normative. Parents often described a process of acceptance over years from symptom onset to when they (and others) accepted these symptoms were indicative of a problem.
Parents described hesitation to pursue evaluation too early and a preference for assuming the behavior was a developmental phase.
I just kept telling myself he’s gonna grow out of it.… Once he gets, you know, older and he starts school and he’s in kindergarten, he has more structure, like, he’ll grow out of it, and he just didn’t.
31-year-old mother of a 7-year-old boy
Parents described worsening impairment that ultimately led to acceptance of the problem and the decision to pursue evaluation and/or treatment.
She was hyperactive but it wasn’t anything to the extent of where it’s gotten now.… And, it just got in a snowball from there, so that’s when I took her…to a pediatrician and said…you guys should take a look at it.… It just got to a point where she didn’t wanna go to school.
43-year-old mother of a 9-year-old girl
Learning about ADHD facilitated acceptance of the problem and engagement.
The first time around I knew nothing. There was a steep learning curve.… Everything he did, I was reading… “My goodness. Is that normal?… Is that because of the ADHD or is it because of something else?”… It was all new.
40-year-old mother of a 9-year-old girl
Stage 2: Stigmatization and Fear (“I’m Being Judged”)
Having accepted that their child’s symptoms were not normative, parents faced public and internalized stigma about ADHD, as well as other forms of discrimination, that caused reluctance to pursue treatment.
Parents perceived being blamed or judged for their child’s behavior.
Basically you are not doing a good job as a parent because you’re not putting your foot down.
36-year-old mother of an 8-year-old boy
Parents also reported feeling guilty or resenting their child.
You think, as a mom, that you did something wrong. What are people going to say?… You just can’t handle how they are at their age like normal kids.… You don’t really want to be told that they have ADHD.
29-year-old mother of a 8-year-old boy
Parents faced negative community attitudes about ADHD treatments.
It has always scared me to put him on medication, because…if you give them that, they will stay addicted, or people will call them crazy.
34-year-old mother of a 10-year-old boy
Parents feared telling others or asking for help because of concern about how they would be perceived and whether they would be taken seriously.
When it comes to the African American community…a lot of times you’re told to pray, or…you have to be the strong Black woman or…this masculine man…so a lot of times we don’t seek help…and when we do, we’re not taken seriously. They’re dismissive, as if you’re just here because you want the meds.
43-year-old mother of a 9-year-old girl
Stage 3: Action and Advocacy (“Like the Lone Wolf”)
Parents reported they were the best advocate for their child’s treatment, alone, often facing conflicting opinions about treatment and unfriendly systems.
I’m in the middle of doing what’s best for my sons and in the middle of what people says and what my family says, even what their dad believes or not.… Whether I make the right or wrong choice, it’s always going to follow me.
29-year-old mother of an 8-year-old boy
Parents faced providers who were not ready to acknowledge the problem or take action on behalf of their child.
I have my concern. I expressed it to the doctors, but they were never concerned, they never looked at it in depth. They never listen to me.
42-year-old mother of a 10-year-old boy
Gaining knowledge and receiving support from professionals and peers empowered parents.
At the end of the day, I’m really going to be the only one that makes sure they get the best care. So, I just make sure I go above and beyond to take in everything that I learn, take in everything that’s said to me, all the advice that’s given to me. And like I said, research helps me a lot.
38-year-old mother of a 16-year-old girl
Stage 4: Communication and Navigation (“Four More Villages”)
Parents reported that ADHD care involved navigating systems to connect with a team of service providers in multiple realms. Navigating the system and coordinating providers could be overwhelming but improved with good care coordination and communication.
Parents emphasized the difficulty managing a child with ADHD alone and the need for more help than with neurotypical children.
It’s not easy to deal with it. It takes a village to raise a child. But a child with ADHD needs three or four more villages, and…it’s life consuming.
42-year-old mother of a 10-year-old boy
Parents described feeling frustrated and overwhelmed by difficulty accessing and coordinating care, including related to logistics, cost, and transportation.
It was kind of hectic because she had so many services in place and I was overwhelmed…I felt like giving up. It was just too much on me.
43-year-old mother of an 8-year-old girl
Parents valued good communication with and between treating providers.
Myself and his behavioral health in school and [therapist]. All of them. His primary care. Everybody that he’s been involved with, we had a meeting…before he got his IEP [individual education plan], and then we all made an agreement.
44-year-old mother of a 10-year-old boy
Stage 5: Care and Validation (“He Said I Was Right”)
Parents valued long-term, trusting relationships with service providers who provided support, validation, and reassurance throughout treatment.
Parents disliked providers who performed the minimum and agencies with high staff turnover.
The negative piece of all of the services that we have…had is, unfortunately, the job is a very, very high burnout job…when you get comfortable with somebody and the kids form a relationship with that person, they leave.…
40-year-old mother of a 9-year-old girl
Ongoing fear of stigmatization or discrimination created skepticism.
I take the doctor’s advice and everything and I do my own research when I leave…I make my own decisions for my own kids.
38-year-old mother of a 16-year-old girl
On the other hand, caring and dependable providers built trusting relationships and engaged families in treatment.
They’re very concerned. They listen to me. They make me feel comfortable that they’re there for my kids and me at the same time.
62-year-old mother of a 10-year-old girl
Parents sought validation of their struggles, reassurance about treatment, and their own supports.
Seeing a therapist myself. It helps a lot, so I’ll be able to get off my back what I have held inside instead of yelling at her…because it’s really hard dealing with a kid that has ADHD.
43-year-old mother of an 8-year-old girl
Stage 6: Preparation and Transition (“Life Is Not Easy”)
Parents described the process of preparing their child for the future and worried about ADHD interfering with future academic and occupational success.
I feel like if his lack of attention and the concentration gets in the way of his schooling, then it’s like, what kind of job will he have? Even in the trades you have to pay attention.
42-year-old mother of a 10-year-old boy
Preparation for independence was a strong treatment motivator.
They’re always going to be choosing bad choices. I can see it. It’s going to be a huge problem in their life when they get older. I’m trying to prevent it now by getting all this help.
62-year-old mother of a 10-year-old girl
Some parents described discussing the diagnosis of ADHD with their child to encourage self-management skills and to preempt misinformation.
I told him, “Everybody’s different. Some people need extra help with certain things. Some people don’t.” I try to express to him as much as possible that no matter what he’s still going to be loved. But I told him it’s always good to be different.
29-year-old mother of an 8-year-old boy
Parents’ or providers’ reluctance to accept the diagnosis, stigma and fear, or skepticism about treatment caused hesitation to discuss ADHD directly with the child and prepare them for a future with ADHD.
It’s like a labeling thing.… You don’t want your kid to feel uncomfortable. And the next thing you know, “I don’t want to go to school anymore.”
33-year-old mother of a 9-year-old girl
Discussion
Thematic analysis of in-depth interviews with parents of children with ADHD uncovered 6 stages of engagement in ADHD care, starting with acceptance that symptoms were not normative and advancing through preparation for the child’s independent future. Parents described each stage as a milestone preparing them for the next and had success when support from providers matched their own stage of engagement. Authors of previous studies have reported some similar themes, but none have provided a comprehensive framework with a developmental trajectory navigated by parents and providers together, which could serve as a model for developing and tailoring engagement interventions.
Other qualitative studies have described specific stages of our model. For example, in a qualitative study on treatment-seeking with diverse parents of children with ADHD, Leslie et al33 reported 4 patterns reflecting different progressions through stage 1. They reported that low-income Spanish-speaking families were more often reluctant to accept an ADHD diagnosis or treatment, suggesting cultural influences also described by parents in our study. In another qualitative study with parents of mostly African American children with a new diagnosis of ADHD, DosReis et al41 reported that most families perceived ADHD stigma, with many similarities to stigma described by our parents in stage 2, including self-blame and dismissiveness by medical providers. Brinkman et al34 conducted a qualitative study with 75% non-Hispanic white and 25% non-Hispanic Black parents to understand their decision-making about ADHD treatment. Parents described the importance and process of accepting an ADHD diagnosis (as in stage 1), sometimes facing stigma as a barrier to treatment (as in stage 2), and need for ongoing validation of treatment decisions, including contrasting time on and off medications (as in stage 5).
Our findings suggest that typical measures of treatment engagement do not capture the full extent or spectrum of family engagement in care. The most commonly used measures of treatment engagement (eg, appointments attended or prescriptions filled19 ) are systems oriented and provider centered and do not inform strategies to improve or measure engagement tailored for individual families. On the other hand, 2 existing measurement tools capture important elements of the engagement process we describe that could be used proactively in the treatment process. The ADHD Preference and Goal Instrument42 helps assess a family’s preferences for and hesitations about behavioral therapy and medication management as well as overall treatment goals. The instrument includes questions about stigma, hesitation about treatment, willingness to engage, and feasibility of different treatments. Another tool, the ADHD Stigma Questionnaire,43 was adapted from the HIV Stigma Questionnaire and assesses perception of stigma encountered by people with ADHD, although it has not been tested for use with parents or in a clinical setting. The 6 stages framework could be used as a guide to develop more tools to measure a family’s engagement stage and thus help systems and providers better respond to individual families’ needs, tailor treatment recommendations, and individualize outcomes assessments.
Staging models are not new to behavioral health. The most well-known stage model in behavioral health care, the transtheoretical model (ie, stages of change model),44,45 was originally developed in the 1970s from studies of smoking cessation. For decades, the transtheoretical model has provided a successful blueprint for expanding and personalizing behavioral and substance abuse intervention strategies through a process of stage matching.46 Similarly, using the 6 stages framework could allow the health system to better match the needs of children with ADHD whose families are at different stages of their engagement process. For example, in stage 2 (stigmatization and fear), parents explained how discrimination based on race or ethnicity intersected with ADHD stigma in their community to delay care. Interventions that target discrimination and stigma could include antiracism training for treaters and a family-oriented component addressing misconceptions about ADHD, bridging explanatory models, and brainstorming responses to stigmatizing statements. In stage 6, even parents with young children grappled with how to prepare their child for the future and communicate with them about ADHD. Most research on transitioning to independence with ADHD targets adolescents,47,48 but our findings suggest that interventions facilitating parent-child discussion about ADHD should begin earlier.
Our study has multiple strengths. Our sample included primarily parents of low-income and racial and ethnic minority youth, who are most likely to experience difficulty engaging with care. We conducted interviews in 3 languages, increasing the diversity of important perspectives on ADHD care engagement. We used rigorous qualitative methods, including double-coding with reliability tracking and an intensive group axial coding process. Finally, our study design, which was intended to inform intervention development, yielded clinically relevant findings with immediate clinical application.
Limitations of our study include that we recruited from 1 safety net hospital system, and so our findings may not apply to other settings. We recruited a clinical sample and thus do not have perspectives from families with children not diagnosed with or treated for ADHD, who should be included in future studies on engagement in care. We did not have quantitative information on years of treatment or age at diagnosis, which would have added a useful dimension to triangulate findings. We included diverse families but did not identify how families of specific racial or ethnic groups might progress differently through the stages, which could further inform use of the 6 stages model.
Conclusions
Our qualitative study revealed 6 stages of engagement in ADHD treatment described by parents of predominantly racial and ethnic minority children with ADHD. Parents described each stage as both a barrier to overcome and a milestone to navigate. Stage mismatch between parents and providers caused difficulty and conflict and interfered with engagement. Our findings have important implications for the measurement of engagement and the development of family-centered interventions to improve engagement in ADHD treatment.
Dr Spencer conceptualized and designed the study, developed the data collection instruments, coordinated and supervised data collection, conducted the thematic analysis, drafted the initial manuscript, and reviewed and revised the manuscript; Ms Sikov, Ms Loubeau, and Ms Zolli recruited participants and collected data, conducted the thematic analysis, drafted the initial manuscript, and reviewed and revised the manuscript; Ms Baul developed data collection instruments, supervised and conducted the thematic analysis, drafted the initial manuscript, and reviewed and revised the manuscript; Ms Rabin, Ms Hasan, Ms Rosen, and Ms Buonocore collected data, conducted the thematic analysis, and reviewed and revised the manuscript; Ms Lejeune and Mr Dayal drafted the initial manuscript and reviewed and revised the manuscript; Drs Fortuna, Borba, and Silverstein conceptualized and designed the study, guided the process of the thematic analysis, and critically reviewed the manuscript for important intellectual content; and all authors approved the final manuscript as submitted and agree to be accountable for all aspects of the work.
FUNDING: Supported by the Gordon and Betty Moore Foundation (grant 5300), the National Institute of Mental Health (grant K23MH118478), and the National Center for Advancing Translational Sciences (grant UL1T R001430). The funders/sponsors did not participate in the work. Funded by the National Institutes of Health (NIH).
- ADHD
attention-deficit/hyperactivity disorder
- BMC
Boston Medical Center
References
Competing Interests
POTENTIAL CONFLICT OF INTEREST: The authors have indicated they have no potential conflicts of interest to disclose.
FINANCIAL DISCLOSURE: The authors have indicated they have no financial relationships relevant to this article to disclose.
