Houston Project DOCC
Children who have chronic/long term illnesses or severe disabilities have complex needs that can make the healthcare system difficult to navigate. As doctors are traditionally trained to focus only on the medical situation, they may be unaware of the day-to-day issues in the lives of families with children who have significant needs. In 1994, parents in New York State developed Project DOCC (Delivery of Chronic Care) as a family-centered and community-based pediatric training program designed to increase doctors’ awareness and understanding of the complex issues involved in caring for medically involved children.
Establish new and/or expand on the already existing Project DOCC programs in Texas at up to four teaching hospitals with pediatric residency programs. Develop a teaching and training program that allows families of children with chronic illness/developmental disabilities (DD) to transfer their acquired knowledge and life experience to pediatric resident physicians.
Houston Project DOCC was started at University of Texas Medical School Houston (UTMSH) to provide pediatric residents and other members of the medical community with a comprehensive understanding of life with a child with chronic illness/DD. The project aimed to widen their perspective from hospital/office to the home and community and show the need for partnerships between the physicians and families to improve the quality of life for families and children.
Parent teachers were trained and participated in DOCC training components with UTMSH residents. Project DOCC held a “Grand Rounds Panel Presentation” as well as an “Accessing Resources Presentation” for the pediatric residents and medical students as part of the “UTMSH Noon Talk Lectures Series” in 2009 and 2010. In addition, DOCC parent teachers participated in the UTMSH Advocacy Workshop.
Pre- and post-evaluations were conducted with UTMSH residents and parent teachers. Post evaluations showed the benefit of Project DOCC to residents, many saying it was “eye-opening.” Residents noted significant positive change in their understanding of the long-term impact that a child’s chronic illness or disability has upon the entire family as well as their knowledge about the at home care of children with chronic illness and/or disability. Residents also stated they had an increased understanding of the stages of grief experienced as well as the coping mechanisms used by families with a child with chronic illness or disability. They believed that following their participation in the project, they were better able to assist a parent who is “burned out” by the care of a child with a chronic illness or disability and their familiarity with community resources available to help support parents of children with chronic illnesses or disabilities had increased.
- Eleven parent teachers were trained and nine participated in DOCC training components with UTMSH residents
- The majority of residents (90% for 2009 analysis and 100% for 2010 analysis) indicated that participation in Project DOCC had made them more willing to work with children with chronic disabilities and their families
- Residents reported an increase in the perception of their knowledge, understanding, familiarity, and ability to assist with many facets of life for families caring for a child with chronic disabilities
- After participation, pediatric residents were more likely to believe that parents of children with chronic illness or disability should have an active and equal role with physicians in making all decisions related to their child’s care