Reimagining the ADHD Experience: Transforming Parent Engagement in ADHD Care

Abstract

In response to the needs of families of children with attention-deficit/hyperactivity disorder (ADHD), we set out to create a carefully designed and evidence-informed parent tool (The ADHD Playbook) with the goal to increase parental knowledge and confidence around effective engagement in the care of their child with ADHD. Evidence suggests that families do better when parents are actively engaged in leading their child's care team, serving as confident and informed caregivers and advocates. To this end, the ADHD Playbook was developed to fit unmet educational needs and is based on current guidelines from The American Academy of Pediatrics, review of the literature, parent/physician feedback, and professional design to ensure a user-centered focus. As the Playbook is intended for use in the primary care setting and at the time of ADHD diagnosis, the Playbook fulfills a time-critical need for families. This Playbook holds promise for broad public health impact due to easy scalability and the potential to decrease barriers to care and increase equity via semisubspecialty resources offered in the primary care setting.

Introduction to the Problem

Background

Attention-deficit/hyperactivity disorder (ADHD) is a common neurodevelopmental disorder in youth with a worldwide prevalence of 5.3% and approximately 11.4% (7 million) US children having ever received the diagnosis.^1-3 ADHD can have significant consequences for patients and families across multiple domains (school, home, relationships) and is characterized by varying levels of hyperactivity, impulsivity and inattention that differ from the expected developmental stage and impair daily function.^4,5 Clinical guidelines from the American Academy of Pediatrics (AAP) recommend FDA-approved medications, parental training in behavioral management, and behavioral and educational classroom interventions for school-aged children.^4,6 Unfortunately, two-thirds of children with ADHD (∼4 million children) do not receive care fulfilling all recommended domains or are untreated.^2,3 There are many barriers to adequate care including access to services, stigma, and complexity of effective interventions. ² These barriers represent and perpetuate a lack of equity that affects the child and family acutely and with long-term implications: untreated and under-treated ADHD has been linked to increased mental health disorders, substance misuse, teen pregnancy, lower high-school graduation, and lower work productivity. ⁷ Parents report feeling overwhelmed and unsure of the best ways to obtain appropriate care for their children despite effort and desire.^8,9

Unsurprisingly, evidence suggests that children with ADHD and their families do better when parents actively engage with clinicians and educators, serving as informed caregivers and advocates.^8-11 Many parents do not have access to the knowledge, skills, and confidence to engage in this way, however. Though high-quality information on ADHD exists, timely access to readable, digestible, and actionable material is challenging. Most parent-facing tools focus on medication decisions or behavioral parent training, and are presented in a scientific format or require subscription/payment, making them less accessible.^12,13

This paper reports on our efforts to mitigate these barriers by creating a parent-focused ADHD education tool designed to address knowledge, skills, and resources that can build parental confidence and agency. This tool is strengths-based, multimodal, easily accessible, and free with current paper and planned digital options. Core content is based on AAP guidelines for ADHD care and is further supported by recent literature which continues to highlight the important role of multimodal care for ADHD. ¹⁴

Description of The Intervention

The ADHD Playbook Overview

The ADHD Playbook is a strengths-based educational, motivational and strategy-focused tool that includes the following sections: (1) General ADHD knowledge, (2) recommendations for school partnership and advocacy, (3) tangible skill-building strategies and therapy, (4) optimization of sleep, nutrition, physical activity and screen time, (5) medication options, and (6) alternative therapies such as supplements, mindfulness, art and music therapy (see Figure 1). The Playbook starts with a front-facing “map” to ground the user in their learning. The Playbook ends with a summary of subject-matter expert-vetted and curated resources for parents/children including books and online sources (including websites, apps, and webinars).

Figure 1.

Excerpts from the ADHD Playbook. Graphics: StorySet. https://storyset.com.

Tool Development

Design and Development Overview

The target audience is parents/caregivers of children (aged 6-12 years old) with a new diagnosis of ADHD. As noted, the content of the ADHD Playbook is based on core principles from the AAP ADHD clinical practice guidelines. ⁴ A supplemental review of the literature was performed that included PubMed and PsycINFO (unrestricted date range) to explore related topics including ADHD Evaluation and Management, Parent Empowerment, Parent Tools and Multimodal Approaches. An additional Google search sought parent-facing tools designed for consumer or clinical use available online but not published in the medical literature. These searches were supported by professional librarians at an institutional biomedical library to optimize completeness. Results from this review complemented additional evidence-informed sections of the Playbook.

Professional Design

We engaged a professional designer to help develop ADHD-friendly visual designs including layout, fonts, and colors. To mitigate variations in medical literacy among parents, we aimed for a Flesch-Kincaid Reading Level of sixth grade. Though the current Playbook version is at a 7–ninth grade reading level, we continue to make edits with this goal in mind. The ADHD Playbook is intended as a color-printed booklet; however, it can be printed double-sided/black and white such that printing and distribution by community physicians is easy and low-cost. A companion website is planned to facilitate access and easy updates to respond to emerging evidence-based recommendations.

Parent/Professional Engagement and Feedback

Early in design and throughout content development, parents were actively engaged in project iterations. The ADHD Playbook version 1.0 was given to five parents of children with ADHD. Parents were asked to (1) read the Playbook, (2) comment on each section in terms of content, visual layout and learning points, and (3) asked to offer suggestions for improvement. Semistructured in-person interviews were conducted to probe for the above elements and to clarify understanding. These key informant interviews quickly reached redundant comments, suggesting high agreement in need and topic interest.

Additionally, five clinicians, a Learning Specialist and a Special Education Director were similarly asked to review the Playbook with a focus on (1) readability, (2) content accuracy and visual layout, and (3) suggestions for improvement. Our team conducted these semi-structured interviews (30-60-min) either in-person or by telephone.

We used the feedback obtained from parents and professionals to inform edits for the subsequent iterations of the Playbook ensuring a user-centered approach.

Lessons Learned, General

Through scientific and lay literature reviews, we learned that though some parent-facing tools exist (and many are high quality) there are concerns with the available options. These include a general dearth of tools that achieve the combined objectives of (1) education, (2) actionable strategies, (3) up-to-date resources, (4) easy accessibility, and (5) no cost. Many existing resources focus on medication or parent behavior training and do not adequately address the strengths-based and multimodal approach that parents seek for their children.^12,13 Few were designed for use by the primary care physician at the time of initial ADHD diagnosis.

Lessons Learned, Parent Themes

Parents expressed being “overwhelmed” with the myriad of online resources. Parents generally reported a lack of confidence and empowerment to lead their child's care team and sought trusted resources that were easy to access and use. Parents wanted specific education regarding alternative strategies to medications and tangible skills and tactics to help manage defiance and emotional dysregulation. Parents expressed connection with the colorful front-page map and called it “grounding.” Parents appreciated the strengths-based approach and particularly liked the “Action” pages that offered specific strategies for home and school. Additional feedback included request for more information on screen time, medication side-effects and executive function coaching as well as parent support groups.

Lessons Learned, Professional Themes

Professionals generally agreed that children and families with ADHD need additional resources, and that the Playbook included needed tools. They agreed that primary care physicians often don’t have the time or resources to adequately educate families on options. The learning specialist noted that the strengths-based focus and actionable strategies could be very helpful to her clients. A primary care clinician requested additional inclusions of art and music therapy. The Special Education director appreciated the emphasis in team building between the family, school and health care providers. This individual provided additional clarification and insight into the local range of current school-based interventions for children with ADHD. The pediatric integrative medicine specialist shared further recommendations and evidence to support specific complementary medicine inclusions. Overall, the professionals lent insight into how they might use the Playbook in practice and additional content that they wished to see included.

Conclusion and Next Steps

This paper reports on the initial design and development of a new education tool for parents of children with ADHD (The ADHD Playbook) and user-centered efforts to develop evidence-based and evidence-informed, parent-focused tools that can instill confidence and agency in parents at the time of ADHD diagnosis. We have described our development process and shared insights from parents and professionals who have offered feedback and recommendations, informing subsequent iterations of the Playbook. As the science of ADHD treatment evolves, there is continued necessity to explore the multimodal treatment of ADHD while also recognizing the important role of medication in ADHD management.^14,15 The next stage of our research is a pilot study examining the feasibility and acceptability of the Playbook for a sample of parents and primary care clinicians. To date, we have distributed approximately 100 Playbooks to parents of children with ADHD (within an ADHD-focused clinic housed in an academic primary care setting) and qualitative and quantitative data collection is in process. Clinicians from multiple primary care clinics in rural northern New England are participating in the clinician feasibility/acceptability study. These pilot data will provide additional knowledge about the usability characteristics of the Playbook in real-world settings and will allow us to show evidence of impact.

Future research is planned to determine the Playbook's effectiveness in improving parents’ knowledge, self-efficacy, engagement in care and impact on confidence and quality of life. The long-term goal is to enhance the care of children with ADHD with a high-quality and free educational tool that can decrease barriers to care, enhance equity and ultimately improve the outcomes for patients and families with ADHD.