1. The Boggs Center/UMDNJ-RWJMS The Boggs Center’s Seminar on Family Centered Care and Developmental Disabilities – Home Visits Deborah M. Spitalnik, PhD Sheryl White-Scott, MD Carrie Coffield, PhD Kathy Gabry, Parent educator

2. Seminar on Family Centered Care and Developmental Disabilities The Boggs Center/UMDNJ-RWJMS Required component of 3 rd year pediatric clerkship: this would be modified to make applicable for Residents. Timing: early or middle of clerkship works best Held 8 times each academic year 2 day seminar Consecutive half days Day #1: Students attend Rounds in morning, Seminar in afternoon, Family visit early evening Day #2: Debrief Didactic, values clarification, family visit, debriefing session

3. Didactic Day 1 Seminar Physician or psychologist presents first half Define disability and developmental disability Introduce common developmental disabilities Exercise: Consideration of family needs/concerns across the lifespan Exercise: Values clarification Parent Educator presents second half Personal experience with disability/impact of disability on the family Importance of practicing family centered care “Heart bytes” – suggestions for how the medical community can provide compassionate care

4. Home Visit Day 1 Dinner with family of a child with a developmental disabilities Students/Residents travel to family’s home at pre-arranged time Students/Residents visit families in pairs or groups of 3 Students/Residents are accommodated based on dietary restrictions and pet allergies Visits last 2-3 hours, on average

5. Home Visit – Family role Families: Role of teacher Structure the visit, including 3 major points they would like to impart Discuss both positive and negative experiences related to the medical care of their child Discuss issues, concerns and implications of having a child with a disability as a member of the family Discuss specific ways physicians can be supportive and responsive to families Interact with students in a non-clinical setting, thereby allowing the students to see the family in its usual care-giving, decision-making role Participate as volunteers We would love to be able to provide stipends to families, but are unable to at this time Are oriented to project and prepared for what to expect

6. Home visit – Student/Resident role Medical Students: Observant learners Explicitly directed not to give medical advice Are encouraged to interact with all members of the family Are encouraged to ask questions about all aspects of life, not just the family’s interaction with the medical community Parent’s social life, child’s social life, child’s school, the future Are asked not to wear white coats, stethoscopes

7. Reflection and Evaluation Day 2: 2 hours Discussion and reflection Students/Residents are encouraged to lead discussion, reflect on visits, raise any questions or thoughts that the visit evoked Forces students to make sense of the visit through the lens of their own experience and biases Values clarification exercise revisited Evaluation

8. Seminar Outcomes: Students/Residents increase knowledge of specific disabling conditions learn about contemporary views on developmental disabilities begin to acknowledge and explore personal biases that influence their diagnosis, treatment and prognosis of people with disabilities learn about the elements of family centered care increase sensitivity to the needs of families which include children with disabilities through discussions with families in home settings interact with children who have disabilities within the context of their family and home Increase appreciation for the expertise individuals with disabilities/families bring to the healthcare encounter

9. Student feedback! The Boggs Center/UMDNJ-RWJMS Medical student reaction to seminar “I thought it was eye opening. Never had a chance to talk in my adult life to a parent with a child with a developmental disability.” “Outstanding! I am so happy I had the experience during my first rotation. I will carry it with me always.” “An excellent experience that should be mandatory for every student. The families are a huge asset to this school and to our education.”

10. Tips for Successful Home Visits Screen families to ensure that they are open and willing to address student questions across a variety of topics Orient families to the project, its goals, and its structure Encourage families to share positive experiences alongside negative ones and to view this as an opportunity to positively impact the education of the next generation of doctors Encourage as many members of the household as possible to be present and to interact with the student doctors so that multiple perspectives are presented