The Boggs Center/UMDNJ-RWJMS

The Boggs Center’s Seminar on Family Centered Care and

Developmental Disabilities – Home Visits

Deborah M. Spitalnik, PhDSheryl White-Scott, MDCarrie Coffield, PhD

Kathy Gabry, Parent educator

The Boggs Center/UMDNJ-RWJMS

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 bestHeld 8 times each academic year

2 day seminarConsecutive 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

DidacticDay 1

SeminarPhysician or psychologist presents first half

Define disability and developmental disability Introduce common developmental disabilitiesExercise: Consideration of family needs/concerns

across the lifespanExercise: Values clarification

Parent Educator presents second halfPersonal 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

Home VisitDay 1

Dinner with family of a child with a developmental disabilitiesStudents/Residents travel to family’s home at pre-

arranged timeStudents/Residents visit families in pairs or groups

of 3Students/Residents are accommodated based on

dietary restrictions and pet allergiesVisits last 2-3 hours, on average

Home Visit – Family roleFamilies:

Role of teacherStructure the visit, including 3 major points they would like to

impartDiscuss both positive and negative experiences related to the

medical care of their childDiscuss issues, concerns and implications of having a child with a

disability as a member of the familyDiscuss 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 volunteersWe would love to be able to provide stipends to families, but are

unable to at this timeAre oriented to project and prepared for what to expect

Home visit – Student/Resident roleMedical Students:

Observant learnersExplicitly 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 communityParent’s social life, child’s social life, child’s school,

the futureAre asked not to wear white coats,

stethoscopes

Reflection and EvaluationDay 2: 2 hours

Discussion and reflectionStudents/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 revisitedEvaluation

Seminar Outcomes: Students/Residents increase knowledge of specific disabling conditions learn about contemporary views on developmental

disabilitiesbegin 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

The Boggs Center/UMDNJ-RWJMS

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.”

Tips for Successful Home VisitsScreen 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