Published online September 30, 2005
PEDIATRICS Vol. 116 No. 4 October 2005, pp. e512-e517 (doi:10.1542/peds.2005-0243)

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ELECTRONIC ARTICLE

Fragmented Care for Inner-City Minority Children With Attention-Deficit/Hyperactivity Disorder

James P. Guevara, MD, MPH^*, Chris Feudtner, MD, PhD, MPH^*, Daniel Romer, PhD, Thomas Power, PhD, Ricardo Eiraldi, PhD, Snejana Nihtianova, MS^*, Aracely Rosales, BS^||, Janet Ohene-Frempong, MS^¶ and Donald F. Schwarz, MD, MPH^#

^* Pediatric Generalist Research Group
Department of Psychology
^# Division of Adolescent Medicine, Children’s Hospital of Philadelphia, University of Pennsylvania, School of Medicine
Institute for Adolescent Risk Communication, Annenberg Public Policy Center, University of Pennsylvania, Philadelphia, Pennsylvania
^|| Rosales Communications, Philadelphia, Pennsylvania
^¶ JO Frempong & Associates, Elkins Park, Pennsylvania

Objectives. To identify systematic problems in coordinating care for inner-city minority youths with attention-deficit/hyperactivity disorder.

Methods. We recruited participants from inner-city minority communities in a single metropolitan area for a focus group study. We held separate meetings for pediatricians, mental health therapists, school staff, and parents (both black and Latino). We audiotaped and transcribed the meetings. We identified themes by consensus and used root cause analysis as a conceptual framework to guide our analysis.

Results. We held 13 focus group meetings. Participants uniformly perceived insufficient communication and coordination of care. Five themes representing system and human factors that contributed to this fragmentation in care emerged: (1) a lack of consensus about who should oversee care; (2) changes in health care providers or teachers; (3) uncertainty in the diagnosis, insufficient training, and few resources; (4) distrust and blame that emerged when relationships among people who care for the child were absent or otherwise inadequate; and (5) lack of support from employers, friends, and family to engage in collaborative care.

Conclusions. Using a root cause analysis framework, we identified system- and human-level factors that were perceived to impede communication and coordination of care for this population of children with attention-deficit/hyperactivity disorder. These results suggest that better organizational policies that define provider responsibilities and accountability, support the coordination of care, bridge relationships between agencies, and provide additional education and resources may improve collaboration. Additional study is needed to assess the generalizability of these finding to other settings.

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Key Words: attention-deficit/hyperactivity disorder • children • qualitative research

Abbreviations: ADHD, attention-deficit/hyperactivity disorder • RCA, root cause analysis

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Accepted Apr 19, 2005.

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