Family-Centered Care Education: Evaluation of the Boyle Community Pediatrics Program

Family-Centered Care Education: Evaluation of the Boyle Community Pediatrics Program William E. Boyle, Jr. MD Toni LaMonica, MSW

Learning Objectives (1) Understand a successful strategy for implementing a qualitative evaluation. (2) Understand how community partners improve patient and family centered medical education. (3) Apply components of a successful program to your own setting.

Boyle Community Pediatrics Program Mission • To recognize and reduce the burden of illness on families of children with serious health issues by creating educational experiences for medical learners. • To enhance patient and family-centered care throughout CHaD/Dartmouth Hitchcock Medical Center.

Boyle Community Pediatrics ProgramVision Community Physicians fully integrate and value the unique contributions that the family and community bring to children’s health. Health Providers Family

Boyle Program: 1998-2007Services & Initiatives Patient Partnerships Family Faculty Community Pediatrics Residency Training CHaD Family Center CHaD Family Advisory Board Schwartz Center Rounds … and more

(A Children’s Hospital within a Hospital) • 80 inpatient beds • Pedi/adolescent unit • PICU • ICN • 95,461 outpatient visits in 2006

Why Evaluate? Why Now? • Fresh, unbiased review to guide decisions about the future. • Obligation to medical center leadership and program funders. • Anticipated leadership changes in the next 3 years.

First Steps • Develop a partnership with Dartmouth Medical School, Center for the Evaluative Clinical Sciences • Hired Aricca Van Citters, MS • Decided on qualitative research methodology -Appreciative Inquiry (AI)

Appreciative Inquiry (AI) Developed by David Cooperrider of Case Western Reserve University in 1980. Basic idea • Focuses on existing capabilities and successful experiences, as a foundation for creating more of what is desired. • Builds upon the strengths of a program.

Appreciate Inquiry 4-D Cycle Discovery Appreciating Destiny Sustaining Dream Envisioning Results Design Co-constructing

To Discover: Which aspects of the program were most meaningful? What are the opportunities for improvements? Are we making a difference? To Dream Where should we be heading over the next five years? Design and Destiny: The 3-5 year plan Goals of the Evaluation:Addressing the First Two Components of AI

Study Design • Selection of 21 stakeholders for interviews 5 Parents • 14 Parents in Parent Task Force • 26 Families in Family Faculty • 9 Parents in the CHaD Family Advisory Board 6 Community Members (n of 17)* 4 Medical Students (n of 24) 6 Pediatric Residents (n of 39) *Including 2 DHMC staff

Interview Questions • How did you get connected to the program and what have your experiences been? • Can you think of a special time that you were most engaged? - What really mattered to you? - How did this special time relate to or reinforce your own values? • What is the heart of the experience you had with the Boyle Program? • What do you wish might be strengthened or built into the Program?

Interview Data • 17 interviews conducted in person • 4 interviews by telephone • Interviews lasted from 35-80 minutes • Interviews audiotaped and transcribed

Analysis Process • Responses were combined into groups - Teachers: family members, community and staff partners - Learners: medical students, pediatric residents • Transcriptions analyzed for common and unique themes within and across the teacher and learner groups.

Analytic Framework Looking Back -What is at the heart or core of this experience? -What makes the Boyle Program work? -How has the program reduced the burden of illness for children and their families? Participants -What I value? -How I got connected -What I brought Experiences -What I did? Looking Forward -What do I take from this program? -What can this program do to affect future practice?

Content Analysis • Identified major themes related to analytic framework. • Examined similarities and differences between teachers and learners. • Participant quotations to illustrate themes.

Advocacy Altruism Communication Community Compassion Continuity Education Family-centered care (FCC) Holistic Improve care Partnerships Relationships Real world impact Reflection Resources Themes – these and more

Top 10 of 30 Themes

Most Common Themes:“What I Value” • Improve care • Education • Relationships • Altruism • Real-world impact 5.Understand patients

What I Value

Participants – What I value? “Med school just runs you down. You come home after being in class for 6 hours …, you have to make dinner, you have to make time for your husband, you have to do the laundry. It is just an overwhelming cycle. Then I take some time out of my day and call [my Patient Partner] and I get this happy inner feeling like I connected with somebody…” Medical student

Learners Patient Partnership is a DMS voluntary program. Community Pediatrics & Family Faculty are requirements of the pediatric residency curriculum. Teachers Families & Community Partners are invited by the Boyle Program. How I Got Connected?

Most Common Themes:“What I Brought” • Interest • Energy • Education • Clinical Complexity • Relationships 5. Real-world impact 5.Improve care

What I Brought

What I Brought? “[We brought] a dedication and a real desire to have some sort of impact… to be able to really have somebody understand. I think that is what it comes down to, you just really want somebody out there to understand the goods and the bads and that life with a child with chronic illness and/or disabilities is not all awful and it is not all wonderful. There are right ways to handle things.” ~ Family member

Learners Meetings with partners Reflections with peers and MD facilitators Visits to community organizations Working in community practice setting Family Faculty home and school visits Teachers Parent Task Force Develop and Advise CHaD Family Center Family Faculty members Community mentors Examples of Experiences

Experiences “I meet with [the residents] at a school and then I show them around the school, introduce them to some of the people, the guidance people and special ed people, kind of give them a tour of the school, and then I would bring them around to the different schools. ... From there I would drive them around to show them some of the neighborhoods, … just to give them an idea of where these kids are coming from.” ~ Community member

Most Common Themes:“What’s at the Heart of the Experience” • Education • Understand patients • Real-world impact • Relationships • FCC 5. Exposure

What’s at the Heart of the Experience? Common Themes Both: Teachers & Learners Teachers Only Education Exposure FCC Holistic Leadership Partnerships Real-world impact Relationships Resources Understand patients Altruism Communication Compassion Continuity Improve care Reflection School

What’s at the heart of the experience? “The absolute heart of this is putting the family’s view of their child’s healthcare first and then supporting it and figuring out a way for our view of healthcare and the family’s view of their child’s healthcare to integrate. … Let them tell their story and then tell our story and integrate them into the best possible combination of stories.” ~ Staff member

Most Common Themes:“What Makes the Program Work?” • Leadership • Relationships • Education • Dedicated time • Community

What Makes the Program Work?

What Makes the Program Work? “Family members and community members are willing to take voluntary time to help shape future pediatricians. I was a resident at the time so that is my world, but they went out of their way to make sure we learned this new dimension of learning.” ~ Pediatric resident

How has the program reduced the burden of illness for children and their families? Domains of interest • Social Isolation • Lack of personal contact and peer relationships • Financial issues • Uncertainty of health outcomes

Social Isolation “I felt privileged that he allowed me, at least for a time, to be his refuge from diabetes and that I was able to help him develop the skills he needed to create those social contacts that he was so craving to have.” ~ Medical student

Lack of Peer Contact “Right there in the Family Center there is always somebody who can address questions. Kids are busy playing and parents feel welcome.” ~ Community member

Financial Issues “For our shelter guests it was important… These are folks that … feel like invisible people in society. Here they are with an M.D. sitting in their living room or kitchen speaking with them for extended periods of time, not just 5 or 10 minutes that you get when you see a doctor, but an hour, hour and a half, in depth discussions about their kids. So I think for our guests it was like, ‘Wow, all of sudden I have a friend who is a doctor’. I think it just made them feel very, very encouraged.” ~ Community member

Uncertainty of Health Outcomes It gives you an understanding of living with chronic disease and what that means in the greater context of the patient’s life, and not just what medications they take….” ~ Medical student

What do I take from the program? “I think the program allows you to practice medicine the way you ideally wanted to practice medicine when you started this whole journey.” ~ Pediatric resident

What can the program do to affect future practice? “I realize that they [parents] know a lot about their kids and we better listen when they come. Often our experiences are these short little inpatient visits and there is a huge other aspect to the child and the family’s experiences having this child.” ~ Pediatric resident

Next Steps: Design& DestinyPlanning & Prioritizing Discovery Appreciating Destiny Sustaining Dream Envisioning Results Design Co-constructing

Most Common Themes:“Opportunities for Improvement and Continued Attention” • Continuity • Education • Advocacy • FCC • Resources

Opportunities for Improvement and Continued Attention

Using the Evaluation to Improve Education and Care • Improve the Boyle Program • Disseminate knowledge to other educational settings • Encourage partnerships with patients, families, and community members to create unique opportunities to teach patient and family centered care. You can do this too!

Improvements for the Boyle Program • Increase community network • Develop closer connections among members of Family Faculty • Support advocacy projects that build connections and continuity • Form strategic planning council for Boyle Program

Family-Centered Care Education: Evaluation of the Boyle Community Pediatrics Program