The Boggs Center’s Seminar on Family Centered Care and Developmental Disabilities – Home Visits

1. 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 The Boggs Center/UMDNJ-RWJMS

2. Seminar on Family Centered Care and Developmental Disabilities • Required component of 3rd 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 The Boggs Center/UMDNJ-RWJMS

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! • 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.” The Boggs Center/UMDNJ-RWJMS

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