1. IMPACT OF A PARENT DIRECTED TEACHING PROGRAM IN FAMILY CENTERED CHRONIC CARE Teri L Turner, MD, MPH, MEd 1, Elaine Hime 2, Mark A Ward, MD 1 1 Department of Pediatrics, Baylor College of Medicine and Texas Children’s Hospital, Houston, TX, 2 Program Director, Project DOCC Abstract Results Background: 9.4 million U.S. children have special health care needs. Project DOCC (Delivery of Chronic Care) is a national training program involving families of children with chronic illness/disabilities as faculty to transfer their knowledge and life experiences to pediatric residents. Objectives: To describe the impact of Project DOCC on pediatric intern’s knowledge, attitudes and beliefs regarding family centered delivery of chronic care. Methods: Project DOCC training consists of two components: a home visit to learn about activities of daily living and accommodations necessary for the child/family and a structured parent interview using a chronic illness history. Training occurs over 2 half days during a 2 week rotation covering core competencies. A pre- and post- assessment questionnaire is completed by each intern at the beginning and end of the rotation (1=not at all familiar to 9=extremely familiar). Results: Paired data was available on 174 interns since 2006. 91% rated the parent educators "highly effective." There was a statistical significant increase in the resident’s "ability to assist a parent 'burned out' by the care" (pre=3.7, post=5.9, p=<0.001), "understanding of the long term impact" upon the family" (pre=3.7, post=5.9, p=<0.001), "familiarity with community resources" (pre=4.7, post=6.7, p=<0.001) and in the belief that “parents should have an active and equal role with physicians in making decisions” (pre=7.8, post=8.0, p=0.016). 79% of all residents who participated in the program felt it made them more willing to work with children who have a chronic disorder. Conclusion: A community based program with parent educators advocating for family centered care is an effective intervention to change knowledge and attitudes regarding the delivery of chronic care to children. Future research should focus on replicating this model in other areas of health care delivery and/or physician populations. Results Design/Methods Background Objectives To describe the impact of Project DOCC on pediatric intern’s knowledge, attitudes and beliefs regarding family centered delivery of chronic care and willingness to work with children in the future who have a chronic disorder. Methods Results Statements of Impact Conclusions Project DOCC is a national training program involving families of children with chronic illness/disabilities as faculty to transfer their knowledge and life experiences to first year pediatric resident physicians in over twenty medical center in the United States as well as Australia. The Project DOCC model was created in 1994 by three parents of children with disabilities in New York who believed that by understanding how families deal with chronic illness/disabilities of their children outside the hospital setting, pediatric resident physicians can become better, more compassionate physicians who in turn affect the lives of many others in the community. “The family at the center of the health care system” Project DOCC consists of two training components which focus on the impact of having a child with a chronic illness/disability on the family. 1.Home Visit – residents travel to the home of a family with a child with chronic illness/disability and “tours” the home, learns about activities of daily living and the accommodations necessary for the child with chronic illness to thrive at home. (Approximately 2 hours) 2.Parent Interview – a parent facilitates a conversation about issues related to caring for a child with a chronic illness/disability using a Chronic Illness History, an framework for interviewing families about the impact on the family including such issues as funding, caregiver medical training and feelings surrounding resuscitation efforts and other end-of-life treatment modalities. (Approximately 2 hours) Training occurs over 2 half days during a 2 week rotation covering core competencies. A pre- and post-assessment questionnaire is completed by each intern at the beginning and end of the rotation. Survey Items Pre- Program Mean* Post- Program Mean* t =p-value 1. How would you currently rate your clinical experience with, and knowledge about, the at-home care of children with chronic disease and disability? 3.90 (SD=1.36) 6.44 (SD=1.11) 24.04<0.001 2. How well do you believe you understand the long – term impact of a child with a chronic illness or disability on his/her family? 4.73 (SD=1.28) 6.67 (SD=0.99) 21.21<0.001 3. How familiar are you with, and how well do you understand, the stages of grief for families of a child with a chronic illness or disability? 4.10 (SD=1.35) 6.07 (SD=1.22) 17.98<0.001 4. How familiar are you with, and how well do you understand, specific coping mechanisms used by families of children with chronic disease/disability? 3.77 (SD=1.37) 6.20 (SD=1.17) 20.86<0.001 5. How well do you think you could assist a parent who is “burned out” with the care of a child with a chronic illness/disability? 3.69 (SD=1.37) 5.86 (SD=1.32) 20.12<0.001 6. How familiar are you with community resources for parents of a child with a chronic illness or disability? 3.24 (SD=1.46) 5.98 (SD=1.31) 23.21<0.001 7. What do you believe should be the decision-making role of parents of a child with chronic illness or disability in regard to the child’s care? 7.76 (SD=1.35) 8.00 (SD=1.05) 2.440.016 Resident’s Pre- and Post-Program Analysis for Academic Years 2006-2010 (n=174) Ratings were given on a nine-point Likert-type scale with 1= not at all familiar and 9 = extremely familiar A community based program with parent educators advocating for family centered care is an effective intervention to change knowledge and attitudes regarding the delivery of chronic care to children. Future research should focus on replicating this model in other areas of health care delivery and/or physician populations. “Sometimes in a place as large as Texas Children’s, in the expansive medical center, I need a reminder that life goes on outside the hospital, that children go home, and then the parents must care for them. Project DOCC helps remind me and helps me to reconnect with the very things that made me want to be a doctor, made me want to be a good doctor, a compassionate one, who patients remember. I am grateful to the families who continue to share their stories, open their homes, open their hearts to us. It renews my sense of patience and my curiosity to discuss openly with the patients’ families what they think about the plan of care, what they think is reasonable, what help they need to take care of their child.” “It was nice to be able to get a peek into the lives of families with a child with a chronic condition. Sometimes, I don’t think we appreciate the struggles that these families go through. We think that we fix them in the hospital and that those are the only problems that they face. I felt a connection with the families and it was very rewarding having the families open up to us and welcome us into their lives. I know that these are the goals of Project DOCC and I think they accomplish their goals very well. Honestly, I think that every health professional should have this type of experience in their training.” “I recall distinctly during Project DOCC how my admiration grew for what these families are required to do and are willing to do for their children. I feel Project DOCC is a program that inspires and educates budding young physicians in a way that no other program I have participated has.” “In caring for patients living with a chronic illness/disability, I always kept my experience with Project DOCC in mind. Instead of giving parents a list of tasks to do, I empowered the parents with the skills necessary to administer care on their own and advised them how to improve quality of life for the child as well as the entire family.” Resident’s Ratings of Project DOCC Parent’s Teaching Effectiveness Resident’s Assessment of Project DOCC’s Effect Upon Their Desire to Work with Children with Special Health Care Needs