Six Stages of Engagement in ADHD Treatment Described by Diverse, Urban Parents

Abstract

BACKGROUND 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. METHODS 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. RESULTS 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. CONCLUSIONS 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.

Addressing Social Determinants of Mental Health in Pediatrics During the Coronavirus Disease 2019 Pandemic

“…Families of color report hesitation to disclose social needs and mental health concerns to primary care providers due to fear of shame, judgement, being reported to child welfare, and not being taken seriously, all rooted in health care mistrust due racism, which can impact the accuracy of screening results. 9 At the same time, we found that even after needs were disclosed in primary care, families of color were less likely to report their social needs were addressed than white families. 10 Overall, children of color have worse access to mental health care than white children, a disparity that may be widening due to COVID-19.…”

The Toll of COVID-2019 on Diverse, Urban Children With Attention Deficit Hyperactivity Disorder and Their Families: A Case Series

“…Participants were parents of children and adolescents diagnosed with ADHD who previously enrolled in a qualitative study on engagement in ADHD care 9 and who were recruited for the original study between June 2018 and October 2019 from pediatric outpatient treatment settings at Boston Medical Center, an urban safety net hospital. The initial and new studies were approved by our institutional review board.…”

“…Almost all parents (95%) reported more difficulty caring for their child during the pandemic because of difficulties with remote school (9), not being able to take their child outside (7), exacerbated behavioral symptoms (6), disrupted routine (1), and financial difficulties (1).…”

“…Nearly all parents (84%) reported that COVID-19 had interfered with their child's learning as a result of disrupted routine (11), lack of special education supports (9), peer interaction (6), individual attention (5), teacher accessibility (4), or difficulty with technology (4). More than one-fifth (21%) of children had not continued any form of academic learning since March 2020.…”

Practitioner Review: It's time to bridge the gap – understanding the unmet needs of consumers with attention‐deficit/hyperactivity disorder – a systematic review and recommendations

“…Need: Improved access to clinical services, support and financial assistance. Though some ADHD consumers in Hong Kong reported no challenges accessing health services (Cheung et al, 2015), consumers from 14 studies (60.9%) reported gaps relating to accessing appropriate clinical services, support and financial assistance (Cheung et al, 2015;Fridman et al, 2017;Ho, Chien, & Wang, 2011;Hossainzadeh Maleki et al, 2018;McIntyre & Hennessy, 2012;Nasol et al, 2019;Pahlavanzadeh et al, 2018;Reale et al, 2015;Rezel-Potts et al, 2021;Sikirica et al, 2015;Simons et al, 2016;Spencer et al, 2021;Swift et al, 2013;Vijverberg et al, 2020). Caregivers reported challenges obtaining an ADHD diagnosis due to long waiting periods and drawn out diagnostic processes, visiting multiple doctors, problems with misdiagnosis, insufficient resources and difficulty finding professionals that would listen (McIntyre & Hennessy, 2012;Rezel-Potts et al, 2021;Sikirica et al, 2015;Simons et al, 2016).…”