1. © Institute for Patient- and Family-Centered Care 6917 Arlington Road, Suite 309, Bethesda, MD 20814 301-652-0281

2. Patient- and Family-Centered Care Overview “An approach to the planning, delivery, and evaluation of health care that is grounded in mutually beneficial partnerships among health care providers, patients, and families.” *Partnering with Patients & families to Design a Patient- and Family-Centered Health Care System: A Roadmap for the Future. A Work in Progress *Institute for Patient- and Family- Centered Care Website www.familycenteredcare.org/tools/downloads.html

3. Patient- and Family-Centered Care Key Principles  Dignity and Respect  Meaningful Information Sharing  Participation  Collaboration * Partnering with Patients & families to Design a Patient- and Family-Centered Health Care System: A Roadmap for the Future. A Work in Progress *Institute for Patient- and Family- Centered Care Website www.familycenteredcare.org/tools/downloads.html The Institute of Medicine’s 2001 report, Crossing the Quality Chasm: A New Health System for the 21 st Century The Institute for Patient- and Family-Centered Care American Hospital Association The Joint Commission Resources The Advisory Board Company

4. Testimony “We have observed that in a growing number of instances where truly stunning levels of improvement have been achieved, organizations have asked patients & families to be directly involved in the process. And those organizations’ leaders often cite this change— putting patients in a position of real power and influence, using their wisdom & experience to redesign and improve care systems—as being the single most powerful transformational change in their history.” *Institute for Healthcare Improvement, Seven Leadership Leverage Points, 2008, page 17.

5.  Find a Doctor who agrees with family-centered care practices.  Express you intentions to your doctor.  Help your doctor help you.  Make sure you understand every test that is order.  Make decision together always with the best interest of your child in mind.

6.  What can I do to help my child?  Please tell me the whole truth of the situation, even if it uncomfortable?  I do not understand medical talk, can you please explain it to me in a way I can understand?  Who are you? And what role do you play in my child’s health care team?  Please let me tell you about our situation, so you can try to understand us as a family? Adapted from: http://www.childrenswishingwell.org/5-questions-every-nicu-parent-should-ask/

7. Patient and Family Centered Care