1. Energizing and Engaging a Work Force for Family-Centered Care Through Annual “Families As Partners” Conferences Presented by Karen M. Crow, MSEd. Coordinator of Family-Centered Care St. Louis Children’s Hospital At the 3 rd International Institute for Family-Centered Care Conference Seattle, Washington August 1, 2007

2. History of the FAP Conferences April, 2002--5 SLCH NICU reps. attended national IFCC conference and wanted to replicate sharing FCC to our hospital April, 2002--5 SLCH NICU reps. attended national IFCC conference and wanted to replicate sharing FCC to our hospital Families wanted FCC expanded from the NICU to all units/services hospital-wide Families wanted FCC expanded from the NICU to all units/services hospital-wide November, 2002—1 st Annual “Families As Partners” Conference put on by NICU staff and families November, 2002—1 st Annual “Families As Partners” Conference put on by NICU staff and families

3. 2002--1 st Annual FAP Conference Family-Centered Care 101 National speaker shared national perspective on FCC and her hospital’s journey of implementing FCC National speaker shared national perspective on FCC and her hospital’s journey of implementing FCC NICU Division Chief shared his perspectives NICU Division Chief shared his perspectives Family panel shared their stories and what FCC meant to their experiences Family panel shared their stories and what FCC meant to their experiences

4. Results of 1 st Conference Hospital president impressed by family panel and “grassroots” nature of movement Hospital president impressed by family panel and “grassroots” nature of movement Assembled a group to determine how to move FCC to all units Assembled a group to determine how to move FCC to all units Recommendation: Hire a coordinator Recommendation: Hire a coordinator May 2003—Coordinator of Family-Centered Care hired May 2003—Coordinator of Family-Centered Care hired

5. 2003--2nd Annual FAP Conference Involving Families: Families As Educators National speaker shared national FCC perspective and importance of family involvement in medical education at many levels National speaker shared national FCC perspective and importance of family involvement in medical education at many levels NICU APN shared personal FCC story and her “conversion” to FCC practice NICU APN shared personal FCC story and her “conversion” to FCC practice FCC champion physician panel shared benefits of family as educators in medical education FCC champion physician panel shared benefits of family as educators in medical education Family panel shared their experiences and “messages” about FCC to staff and physicians Family panel shared their experiences and “messages” about FCC to staff and physicians

6. Results of 2 nd Conference Family-Centered Care Initiatives committee was formed to support staff in furthering their FCC efforts Family-Centered Care Initiatives committee was formed to support staff in furthering their FCC efforts Sibling Help Force formed to address how to better support patients’ siblings Sibling Help Force formed to address how to better support patients’ siblings Added members to FAC Added members to FAC More departments seeking FCC help More departments seeking FCC help

7. 2004--3 rd Annual FAP Conference Having Those “Difficult Conversations” National speaker shared national perspective and her work with FCC and multicultural issues related to such conversations National speaker shared national perspective and her work with FCC and multicultural issues related to such conversations Involving families in discussions Involving families in discussions Families with language issues and cultural differences Families with language issues and cultural differences Talking to families about bad outcomes/death Talking to families about bad outcomes/death Family panel included families with language barriers and families that had “difficult” outcomes Family panel included families with language barriers and families that had “difficult” outcomes

8. Results of 3 rd Conference Inspired departments to ask for help with FCC initiatives Inspired departments to ask for help with FCC initiatives Added FAC members Added FAC members Greater variety of departments attended Greater variety of departments attended Added members to FCCI Added members to FCCI

9. 2005--4 th Annual FAP Conference “Oh, The Places You’ll Go…” National speakers shared national perspective and journey of integrating families throughout their hospital National speakers shared national perspective and journey of integrating families throughout their hospital Staff panel shared “how to do” FCC Staff panel shared “how to do” FCC 5 SLCH departments were invited to present (some w/parents) their FCC initiatives 5 SLCH departments were invited to present (some w/parents) their FCC initiatives 6 poster presentations from other departments’ FCC initiatives 6 poster presentations from other departments’ FCC initiatives

10. Results of 4 th Conference Presenters were models for other areas to inquire and learn “how to do” FCC Presenters were models for other areas to inquire and learn “how to do” FCC Greater sense of “we can do this” in individual areas and practices Greater sense of “we can do this” in individual areas and practices Added members to FCCI Added members to FCCI Keynote speakers took conference idea back to replicate at their hospital Keynote speakers took conference idea back to replicate at their hospital

11. 2006--5 th Annual FAP Conference The Past, Present, and Future of FCC at SLCH The 1 st national speaker returned—spoke about progress of FCC nationally and locally at SLCH The 1 st national speaker returned—spoke about progress of FCC nationally and locally at SLCH SLCH staff video clips tell of “what it was like” and “what they wish for the future”—included hospital leadership SLCH staff video clips tell of “what it was like” and “what they wish for the future”—included hospital leadership SLCH departments highlighted FCC initiatives in 5 break out sessions and 9 poster presentations/displays SLCH departments highlighted FCC initiatives in 5 break out sessions and 9 poster presentations/displays Audience participation of FCC concepts and thoughts Audience participation of FCC concepts and thoughts

12. Results of 5 th Conference Presenters had many communication doors opened as a result—several shadowing opportunities afterwards Presenters had many communication doors opened as a result—several shadowing opportunities afterwards Heightened awareness of presented programs and inspiration for new initiatives in new areas Heightened awareness of presented programs and inspiration for new initiatives in new areas

13. 2007—6 th Annual FAP Conference Nothing About ME, Without ME… New CMO to give keynote New CMO to give keynote First Family Choice Award to be given First Family Choice Award to be given Patient panel to discuss what it was like to be included or not included in their care process and decisions Patient panel to discuss what it was like to be included or not included in their care process and decisions Staff panel who have been involved with a medical event that has since changed the way they practice Staff panel who have been involved with a medical event that has since changed the way they practice 9 departments break out session presentations 9 departments break out session presentations 7 additional department poster presentations— including posters from 2 branch hospitals 7 additional department poster presentations— including posters from 2 branch hospitals

14. Attributed Outcomes (As perceived by staff) Conversations with and shadowing in departments of presentations for further learning Conversations with and shadowing in departments of presentations for further learning “Public permission” to practice FCC “Public permission” to practice FCC Greater awareness of programs and initiatives Greater awareness of programs and initiatives Impetus for new programs that involve family input much earlier in planning process Impetus for new programs that involve family input much earlier in planning process Greater use of Family Advisory Council for “family input” Greater use of Family Advisory Council for “family input” FCC has become a part of hospital’s 5 year strategic plan and annual and individual department goals FCC has become a part of hospital’s 5 year strategic plan and annual and individual department goals

15. Attributed Outcomes (As perceived by leadership) A place to showcase excellence across the organization A place to showcase excellence across the organization National speakers enabled us to hear “national news” and spark our interest to continue to raise the bar National speakers enabled us to hear “national news” and spark our interest to continue to raise the bar Many different people exposed to FCC concepts Many different people exposed to FCC concepts Demonstrated that SLCH had a high priority on FCC Demonstrated that SLCH had a high priority on FCC Many departmental changes—EU, radiology, PICU, SDS, therapy services Many departmental changes—EU, radiology, PICU, SDS, therapy services

16. Added Programs FAC’s Family Choice Award FAC’s Family Choice Award Concierge Guest Service—Pathfinders, “Hospital and Neighborhood Services Guide”, Information Stations Concierge Guest Service—Pathfinders, “Hospital and Neighborhood Services Guide”, Information Stations “Family-Centered Care Today” newsletter “Family-Centered Care Today” newsletter New NICU addition New NICU addition Kid Guides Kid Guides

17. Added Benefits Increase in choices for family participation in care Increase in choices for family participation in care Increase in family input being sought out for committees and focus groups through out hospital Increase in family input being sought out for committees and focus groups through out hospital More families are offering to “give back” through sharing stories/experiences to “make it better for the next family” More families are offering to “give back” through sharing stories/experiences to “make it better for the next family” **Expectation of family presence throughout hospital**

18. Future Endeavors Parent Advisor Orientation/Training program Parent Advisor Orientation/Training program Hiring of “Lead Parents” to help with major FCC program development and coordination Hiring of “Lead Parents” to help with major FCC program development and coordination Families As Educators for residents Families As Educators for residents Family Mentoring Program Family Mentoring Program Unit-Based Joint Practice Teams Unit-Based Joint Practice Teams

19. Lessons Learned Need to prepare family/staff panelists Need to prepare family/staff panelists Variety of staff needed for planning Variety of staff needed for planning “Competitiveness” can be beneficial “Competitiveness” can be beneficial Great enthusiasm is generated! Great enthusiasm is generated!

20. QUESTIONS? Please contact me for more information: Karen Crow Coordinator of Family-Centered Care St. Louis Children’s Hospital One Children’s Place, Suite PL-25 St. Louis, Missouri 63110 Phone: 314-454-2153 FAX: 314-454-4216 Email: kmc8279@bjc.org kmc8279@bjc.org