We recruited parents by asking 20 pediatricians and family physicians at primary care practices in Colorado and Texas to distribute research fliers. These physicians were identified from a list of practices recognized as Level 3 NCQA medical homes1 and had participated in a companion study exploring the changes practices did or did not undergo in seeking PCMH-recognition. To be recognized by NCQA as a PCMH, practices must verify that they have care processes in place that meet standards related to access and communication, patient tracking and registries, care management, patient self-management support, electronic prescribing, referral tracking, performance reporting and improvement, and advanced electronic communications.
We asked providers at these recognized practices to nominate up to five parents of CSHCN for participation in our study and distributing research fliers to them. The research flier described the study, offered a $100 stipend, and provided a toll-free phone number for parents to call if interested. In total, 15 of the 20 providers agreed to nominate parents and distribute fliers. We asked providers to nominate parents of patients with a variety of special needs, including single chronic conditions that require a moderate amount of care, such as attention deficit hyperactivity disorder or asthma, as well as children with multiple complex comorbidities. We asked physicians to consider parents who are struggling and are difficult to engage in addition to those who are managing their child's needs effectively. Twelve parents volunteered to participate in the study, nine of whom met our screening criteria. Parents were eligible for participation if they had a CSHCN, considered the provider that gave them the flier their child's primary care provider, and spoke English.
We recruited parent-leaders purposively, using a list of individuals provided by staff at the Catalyst Center, a nationally recognized center dedicated to improving care for CSHCN. These parents were nominated as experts in the area of CSHCN and as being knowledgeable and involved in medical home initiatives in Colorado and Texas. Using this list, we held discussions with four parent-leaders. At the end of each discussion, we solicited names of additional advocacy or policy contacts from their states with whom they thought it would be useful for us to speak. In this way, we obtained participation from two additional parent-leaders. Mathematica offered a $100 stipend to parent-leaders' home organizations, or their designees, to compensate them for their time.