The FIRST program is designed to teach pediatric residents the knowledge and skills necessary to provide family-centered, community-based care for children with special health needs and their families. Residents have the opportunity to learn and strengthen American College of Graduate Medical Education competencies, especially in patient care, interpersonal and communication skills, professionalism and system-based practice. Funding for the program is provided by the Children’s Miracle Network.

Each resident is matched with a teaching family that is recruited, trained and followed by Nancy Abernathey, M.S.W., project co-coordinator. Families share their experiences and observations with residents during their three years of training in pediatrics.

Based on the principle of family-centered care, the curriculum identifies specific skills and a related body of knowledge essential to caring for children with special health care needs. Through a series of five home visits over three years, residents are able to learn the skills needed to assist children with special health care needs directly from the family with whom they have been paired. Residents meet individually with Abernathey and Barbara F. Frankowski, M.D., M.P.H., FAAP, co-coordinator of the program, to reinforce learning objectives before and after the first four home visits.

The main focus for first-year residents entering the program is to meet the family, learn about local resources and develop a sense of the joys and challenges of raising a child with special health needs. Families reflect on their experiences with physicians and provide candid suggestions regarding communication, collaboration and patient care. First-year students receive an orientation, two home visits and four discussion sessions. The discussion sessions provide an opportunity for residents to ask questions and reflect on what they are learning from the families, and to develop strategies for applying this knowledge to their clinical experiences.

"The FIRST program provides an opportunity for residents to think through challenging situations that they have encountered with any patient and family, and rethink how they could improve communication and patient care the next time," said Dr. Frankowski. "In addition, we feel it is important to let the residents talk about how they feel because that may affect how they interact with patients and families." In the second year, residents continue to visit with the families and the emphasis is on the child in the community. The residents learn how community pediatricians "make things work" for their patients and help with case management.

Residents also visit the pediatricians who care for the FIRST family children. At this time, they have the opportunity to discuss practice management issues, community resources that are available and care coordination strategies with a local "expert in the field." The second visit takes place at the child’s school or child care setting. This provides residents with first-hand knowledge of how special education and related services are delivered to individual children in local school districts.

This interaction also helps residents develop a better understanding of the social interactions between children with special health care needs and their peers. As they acquire familiarity with some of the challenges children face in the community, residents begin to envision how they, as practicing pediatricians, might be called on to advocate for children around school-related issues.

In the last year of the program, residents concentrate on adolescent issues for children with special health care needs. They learn how to help the patient transition from adolescent to adult medical care and more advanced independent living skills. Through a rural health rotation in another community, residents also experience the challenges that families of children with special health care needs face in a rural community. The fifth and final home visit also occurs during the third year of residency.

According to Shilpa Patel, M.D., a third-year resident who participated in FIRST, "The program has helped me understand on a concrete level what some families go through with the multiple stressors of life when having a child with a disability. Not only do the families need to deal with the illness, but they must also face education issues, meeting siblings’ needs and time management."

She added, "I can imagine myself in their shoes, and working through the problem-solving process has been very valuable. It amazes me that they are willing to make the time to train me."

To ensure that the program is meeting the needs of the families and residents, program staff evaluate the program on an annual basis. Both the residents and participating families complete the evaluation.

Dr. Frankowski noted, "We have performed a preliminary survey on a sample of residents placed in the continuity clinic families. The families rated the residents very highly on how they actually practiced the principles of family-centered care."