1. Patient & Family Centered Care
David Seastrom RN, BSN
Trauma Injury Prevention, Outreach
& Education Coordinator

3. Objectives
Recognize and understand the 4 Core Concepts in Patient - Family-Centered Care
Be able to define family presence
Identify ways you can change your practice to be more patient and family centered

4. History Began in 1962 Congressional address from President Kennedy
Right to safety
Right to be informed
Right to choose
Right to be heard
1965 “Head Start” was legislated
Children with intellectual impairments were encouraged to institutionalize their children at facilities such as the “Experimental School for Teaching and Training Idiotic Children.

5. History 1987 - Surgeon General C. Everett Koop
1991 – EMS-C National Resource Center
Children’s National Medical Center
1992 – The Institute for Family Centered Care formed
1993 – Family Preservation & Family Support Act
1994 – The Families of Children with Disabilities Act
C Everett Koop helped sponsor several national conferences on children with special health care needs. He also called for coordinated, family-centered, community-based care for children.
1991 – The National EMS-C Resource Center was formed at Children’s National Medical Center in Washington DC
1993 – The Family Preservation & Support Act was formed with provisions
* Create and fund a continnum of support for family care
* Use funds to create and incorporate preventative services into treatment
* Broaden family definition to include biological, adoptive, foster, etc.
1994 – Provide funding to the states to support system change for disabled children What’s this related to? The American with Disabilities Act.

6. History Why are these important?
Led the way for family / collaborative programs
Women started to challenge
Family advocates voiced concerns

7. Core Values Respect & Dignity Information Sharing Participation
Collaboration

8. Respect & Dignity Listening to Honoring
Planning & Deliver of Care Considerations
Knowledge
Values
Beliefs
Cultural Background
Family perspectives & choices
While all these are important and the right thing to do, showing respect also starts to lower the stress level of the patient and the family. In doing this you will also start to open lines of communication and helpful information may be gained.
Also when we show caring towards out patients it helps the parents. They will carry this experience long long after it is over. Parents tell us they are more comforted and can more easily let their child go “alone” if they know they are going with someone who cares about their child and shows it, if even for a brief minute.

9. Information Sharing Share complete & unbiased information
Share in ways that are useful & affirming
Receiving info in a timely, accurate & complete form
So as to participate & make decisions
Sharing complete information is so very important for those patients and their families to make informed decisions. If we don’t then they miss a piece of the puzzle to make appropriate decisions. *reference mom’s kidney stone*
Sharing the information in ways that are useful is of the utmost importance. Why do you think it is most people prefer a nurse to be in the room when news is delivered to patients and their families? B/c they feel they can approach the nurse and say “what did that mean”. If we don’t share information that way it’s no good. It’s like me taking you all to a Quantum Physics lab and lecturing you on the angular momentum of electrons bound to atoms and then asking you to have a discussion if they were quantized or not.

10. Participation Encourage & Support in participating Level they choose
Care
Decision Making
Level they choose
Non-judging / Opinion forming / etc.
Participation – We ask that our families participate in their children’s care. Now obviously in sterile environments we wouldn’t, but in many many other aspects we definitely do! We at least give them the option. If the parents don’t participate and they are going home with a trach kiddo and something goes wrong, they are not going to be in a position to help their child. From my perspective most parents will jump right in and help out and will WANT to learn.
Level they chose – reference ankle fx during volleyball

11. Collaboration Delivery of care Facility design Program development
Policy development
Ped Emerg Form
This is typically outside the realm of providing care, but more along the lines of program and policy development. A good example of this is our PEF. We had 2 parents sit down with EMS, ED, ICU, etc. and talk about what works. This form will have to work for parents, families, EMS and hospital staff. So it behooves us to include everyone in this. Otherwise more than likely it’s not going to work for someone. Anyone ever wonder who “sits up in those offices” making decisions b/c sometimes they just don’t work in real life….?

12. Core Value Overview Listen to the patient & families
Communication is of the utmost importance
Participation at the families comfort level
Working together we can accomplish more

13. EMS

14. EMS & Family Presence Why do we separate families from their children?
Control
“Our” ambulance
Focus
Multi-tasking
Time
Scene times, etc.

15. Class Participation

16. Who here with EMS has a Family Presence Guideline?
EMS & Family Presence
Who here with EMS has a Family Presence Guideline?

17. Who here with a hospital has a Family Presence Guideline?
EMS & Family Presence
Who here with a hospital has a Family Presence Guideline?

18. EMS & Family Presence
Who here supports Family Presence during invasive procedures & resuscitation?

19. EMS & Family Presence
Who here isn’t exactly sure how they feel about Family Presence during invasive procedures & resuscitation?

20. EMS & Family Presence
“The healthcare field is evolving from a paradigm where the patient is expected to passively comply with diagnosis and treatment to one that emphasizes patient-provider collaboration”
Guidelines for Providing
Family-Centered Prehospital Care
(Consensus Panel from EMS-C, NAEMT & HRSA)

21. Who Supports Family Presence?

22. Family Presence Policy
Family Advisory Board Members (parents)
ED providers
Social Workers
Chaplain
ICU providers
Trauma providers
Child life
Critical Care Transport
Family Care Coordinators
Administration
Code Blue Committee

23. Are We Still Awake?

24. Are We Still Awake?

26. Family Presence Principles behind Guidelines Consistency of Practice
While we attempt to be fair in everything we do, we must admit that some families get to stay with their children and some don’t
Communication with Staff
Attending staff have control over what happens, guidelines give others the right to talk openly about family presence

27. Family Presence Principles behind Guidelines Evolution Culture
Guidelines will create a “guided evolution” of the culture of interaction between staff & families
Culture
Once we make it part of our practice, families will expect it.

28. Family Presence 2000 Clinical Group Recommendations
Family members should be involved in primary training for pre-hospital emergency medical responders at all levels.
Family members should be given the option to be present and to participate in pre-hospital care, on scenes, during transport and during transfer of care to the receiving facility.

29. Family Presence Cont.
So What Does the Research Say?

30. Family Presence Cont. Dingeman, et al. – 2007 JAAP
Growing trend of family members offered to be present are staying present
87% Procedures
83% Resuscitations
86% Right
94% Repeat Decision

31. Family Presence Cont. Sacchetti, et al. – 2005 Anals Emerg Med
7% interfered with care
None significantly alter patient management

32. Family Presence Cont. O’Connell, et al. – 2007 JAAP
136 Trauma Team Activations
197 Family Members Participated
7 asked to leave (various reasons)
Evaluation/Procedure times not altered
97% FMP had none or positive effect on decision-making
92% Improved communication

33. Family Presence Cont.
What can we do?

34. Family Presence Overview
While some choose NOT to be present, nearly all want to be given the option
The research is overwhelmingly in favor of family presence
VERY small percentage of families are disruptive
If not present the option is what the families want

35. Family Presence Overview
Many families present use their observations to conclude everything was done
Families who are present are less likely to litigate
Families cannot usually differentiate between an attending physician from a fellow or a resident

36. Family Presence Overview
Families who are given the option of family presence have a more positive bereavement outcome
Families who are given the option feel as though they have more control of their situation

37. Children’s Mercy Kansas City
So here is my “home”. We are a 314 bed Pediatric Academic Medical Center with over 6000 employees and 700 specialists and subspecialists. We have 167 outpatient clinics and our dedicated specialty transport transported nearly 5000 children last year.

38. Level I Pediatric Trauma Center
Center for Excellence in Pediatric Resuscitation
Leading Cardiac Surgery Program
Leading Hemophilia Treatment Center
Leading Sickle Cell Disease Program
International Consortium of Blood & Bone Marrow Transplant

39. One of a few national comprehensive liver treatment & research centers
National Leader in Specialty Critical Care Transport
Ped. Critical Care Fellowship
Ped. Emergency Medicine Fellowship
Ped. Surgery Fellowship
2007 Designated one of the top five Ped. Emergency Departments in the country
Extensive Research Activities

40. Family Centered Care Coordinators
Sheryl Chadwick DeeJo Miller
Parents on Staff -NOT MEDICAL PROVIDERS
Provide opportunities for families to connect with other families

41. Family Centered Care Coordinators
Children’s Mercy
Family Centered Care Coordinators
Empower families to use the resources CMH provides
Serve as a family voice on committees in the hospital
Provide opportunities for families to connect with other families

42. Children’s Mercy
Family
Advisory
Board

43. Teen
Advisory
Board
Consejo de Familias Latinas/Hispanas

44. We then allow the staff to ask questions dealing with their experience
Death & Dying Workshop
Parents and family members come in and talk with staff physicians, nurses, RT, residents, etc and communicate what was helpful and what was hurtful during their experience of loss.
We then allow the staff to ask questions dealing with their experience

45. Children’s Mercy POPS Parents Offering Parents Support
Primarily phone mentoring
1 on 1
Easy to do
Location not an issue

46. Children’s Mercy New Journeys Guide for Families From Families
Services Guide
Layout
Paperwork Guide
Coping Tips
Hospital Guidelines

47. Children’s Mercy Family Time
“Open house” on the floor so families can get away from the bedside & connect with other families

48. Family as Faculty 13 Families currently Focus on Resident Education
PGY1 – Dinner with FAB
PGY2 – Meet Family in their home
PGY3 – Clinic visit with family
GN Education
Child Life & Music Therapy Interns
Hem/Onc Residents

49. YOU are a piece of the puzzle!
EMS
Social Work
Child Life
Volunteers
Medical Team
Patient
Family
Chaplaincy

50. THE END(s)…