Project DOCC (Delivery of Chronic Care) is a medical education program that strives to improve the quality of life for children who are chronically ill and/or have a developmental disability and their families. Special needs parents are trained as teachers. By using their life experiences, these parents educate doctors-in-training, about their children’s special needs in the community.
Project DOCC believes that the whole family is affected, not just the child. We believe that parents can be effective teachers and that they need to be empowered to advocate for each other about medical, financial, educational, social and spiritual issues. We believe that when families of children with special health care needs partner in decision making at all levels they are more satisfied with the services they receive. We believe that all children with special health care needs should receive regular ongoing comprehensive care within a Medical Home.
Our population of children with special health care needs is new. Advances in medicine, pharmacology, new therapies, technology and programs have extended the lives of our children. Changes in insurance and shortened hospital stays have increased the intensity of care at home. There is a growing population of people with chronic illness living at home and in the community. It is imperative to broaden the training of medical residents to include these New Survivors. Through the thresholds of their homes arrive feeding pumps, oxygen tanks and many medications. Medical providers face new challenges promoting quality of life while continuing to prolong life. New doctors and advanced healthcare providers need to be educated to meet these challenges.
The experiences of children and their families are what providers need to study, to prepare them for their future practice. Project DOCC’s mission is to promote an understanding of the issues involved in caring for a family living with special health care needs regardless of age, diagnosis, or prognosis. Project DOCC seeks to put the family at the center of the health care system.
The Project DOCC Family Faculty enriches the education of physicians in training, and the lives of children and families of the future. Recognizing that current medical education focuses on acute care issues, Project DOCC desires to highlight the needs of chronically ill and children with a developmental disability and their families. Parents of CSHCN are recruited, selected and trained to provide the different components of Project DOCC. They complete an 8-hour initial training to learn how to conduct a home visit and the parent interview. If they are interested in the Grand Rounds, additional training is required to participate in the grand rounds training presentation. To participate, parents must take additional training, with many more hours required for drafting and perfecting the actual presentation.
Families need three ingredients to live successfully in their communities: (1) A pivotal physician (Medical Home) (2) Community resources (3) Quality of life. Project DOCC is a team effort involving both parents and health care providers. Parents can participate in Project DOCC in three ways:
(1) Home Visit. A parent can serve as a Host Teacher by inviting a doctor in training (pediatric residents) into his/her home for a two-hour visit. The parent conducts a tour and discusses a typical day in the life of the child and family. The Host Teacher is assisted by another parent, called the Visiting Teacher, who provides additional perspectives in order to give the doctor a fuller picture of the different ways families live.
(2) Parent Interview. A parent can be interviewed by a resident in a two- hour meeting at the hospital. The interview is based on Project DOCC’s Chronic Illness History Questionnaire which exposes residents to a set of issues and realities not uncovered by traditional medical histories. The interview helps train residents to explore such subjects as what the initial process of diagnosis was like; how parents and children were treated by the health care system during this process; how they learned to recognize their children’s symptoms and to carry out difficult medical procedures, and how families think and plan for their future and those of their children. In the final part of the interview parents tell the doctors about their favorite local and national resources and discuss how health policies affect children with disabilities.
(3) Panel Presentations. A parent can choose to participate with other parents in a group presentation for doctors called a “Grand Rounds” lecture. The goal is to provide an in-hospital opportunity for residents, physicians, nurses, and social workers to hear from parents about caring for children with special health care needs, outside the hospital setting. It explains the lives of families with children with chronic illness or disabilities and the impact that has on the whole family. Parents tell their own stories during a prepared presentation using slides and a video.
Each time a parent conducts a home visit, parent interview or a grand round they are paid a stipend. We have a DOCC coordinator who also receives a stipend for their time in scheduling the families for the home visits and interviews. Each Physician in Training completes a questionnaire for each of the training components to determine the effectiveness/impact of the program to their future practice as well as the effectiveness of the parent educators. All information is used to make improvements in the content of the program information as well as in the training of the parent educators. Data will be compiled regarding the number of parent educators trained to provide the different components of Project DOCC and what component training their participants received.
If you are interested in participating in this program, please contact Natilie Wooldridge via email at natilie@ardisabilitycoalition.org or by calling the ADC office (501) 614-7020.