Patient-Family-Centered Care: National Pediatric Facility Benchmarking Survey

1. Sally Carmen, Sandra McDermott, Steve Teal IFCC Conference July 2007 Patient-Family-Centered Care: National Pediatric Facility Benchmarking Survey Dallas, Texas

2. Customer: One who buys, especially one who buys regularly. Partner: One who joins in an activity with another or others; one of two or more persons who own a business; a spouse; either of two persons dancing together; a player of the same team. Families: Customers, Partners or Both Customer Partner

3. Background • Children’s task force had questions on how to best implement PFCC in a pediatric institution: • Best approach to expand knowledge about PFCC? • How to effectively implement? • Design implications for new facility? • How to learn from top PFCC children’s hospitals? • Need a clear definition of PFCC?

4. Purpose to Answer Following Questions: • What are attributes of a comprehensive PFCC environment in pediatrics? • Are there developmental stages experienced in the journey to PFCC? • How does an institution best measure progress? • What forces drive implementation? • What is PFCC’s impact on the organization and outcomes improvement?

5. Approach • Step 1: Review initiative with CMC IRB • Ensure valid research approach • Step 2: Literature search • Find any data on improved outcomes correlated to implementing PFCC • Step 3: Website search • Study degree and types of PFCC concepts published within top 25 pediatric hospitals

6. Approach • Step 4: Assessment tool • Develop statistically sound approach to evaluate and measure PFCC in pediatrics • Step 5: Benchmark against others • Understand key elements of PFCC already implemented, the driving forces, and approaches used • Step 6: Analyze results • Understand what elements of tools are statistically reliable, what trends emerge and what correlations can be drawn • Step 7: Report/publish • Help CMC and other NACHRI members in implementing PFCC

7. Survey Tool Development Approach • Worked with IFCC to adapt adult self assessment tool for pediatrics • Reviewed 2005 NACHRI PICU Focus Group survey of PFCC in PICUs • Outlined major evaluation categories • Perceived level of implementation • Perceived outcomes of PFCC • Level of patient/family involvement • PFCC level in NICU • Future PFCC implementation priorities • Facility/design elements

8. Survey Tool Development Cont’d: • Major categories to formulate questions • 3 groups • Leadership (Medical, Clinical, Admin) • Patient Care Staff • Family Members • "Perceived Outcomes" leadership/ staff only • Tested questions with end users and edited

9. Survey Tool Development Cont’d: • Survey Tool Tested • Validity check • Content experts • Beverley H. Johnson, IFCC • Marlene Fondrick, IFCC • Lisa Charrin, Texas Children's Hospital Family Advisory Board Past Chairman • Edited again

10. Survey Tool Launched • Web link to online survey hosted on www.Zoomerang.com & emailed to top 25 hospitals. • Data compiled and reported to NACHRI annual conference in Oct. 05. • Many NACHRI hospitals requested participation. • CMC task force opened Zoomerang survey to all NACHRI hospitals for 3 more months.

11. Testing of Survey Tool • Internal Reliability • Cronbach’s Alpha evaluation • Leadership and staff survey: 0.976 • Family survey: 0.968 • A coefficient of .80 or higher is considered as "acceptable" in most Social Science applications • Factor Analysis was used to ensure each item in a subscale was measuring the same dynamic

12. Overall Findings • 1,703 total respondents • Demographics • Leadership – 770 (45%) • Clinical Staff – 666 (39%) • Patient Family – 267 (16%) • 83 Hospitals were rated • 35 States • Australia, Canada, Italy • 34 Hospitals received ratings from at least 10 respondents • 19 Hospitals received a sufficient number of responses to receive a report

13. PFCC Implementation Stages Benchmark • Advanced Stage: very few hospitals are currently performing well in these areas • Children Involvement in Hospital • Family Involvement in Hospital • Design and Quality of Inpatient Rooms • Design and Quality of Parking

14. PFCC Implementation Stages Benchmark • Beginning Stage: even the lowest rated hospitals are currently performing well in these areas • Togetherness During Normal Times • Family Participation and Involvement • Use of Signs Within Hospital • Consultation Rooms

15. PFCC Implementation Stages Benchmark Beginning Concepts Advanced Concepts

16. Findings for Children’s Medical Center Dallas Performing Well Not Performing Well

17. Findings for Children’s Medical Center Dallas • Overall, Children’s scored 2.87 (out of 4) for implementation of PFCC concepts • This overall score ranked 16th out of 34 qualifying hospitals • Subscale Scores and Rankings • Family Participation and Involvement – 3.23 (10th) • Overall Design of Hospital – 3.23 (13th) • Togetherness During Normal Times – 3.22 (22nd) • Use of Signs Within Hospital – 3.21 (11th) • Consultation Rooms – 3.14 (12th) • Overall Décor of Hospital – 3.12 (12th) • Organizational Benefits of PFCC – 3.09 (16th) • Quality of Nearby Facilities – 3.05 (5th)

18. Findings for Children’s Medical Center Dallas • Subscale Scores and Rankings (Continued) • Design and Quality of Lounge Areas – 2.99 (11th) • Improved Satisfaction Due to PFCC – 2.94 (23rd) • Procedures and Treatment Within Rooms – 2.93 (11th) • Design and Quality of Hospital Entrances – 2.92 (17th) • Clear Definition of PFCC – 2.86 (13th) • Togetherness During Critical Times – 2.76 (17th) • Improved Retention Due to PFCC – 2.75 (24th) • Design and Quality of Staff Areas – 2.64 (19th) • Design and Quality of Inpatient Rooms – 2.63 (12th) • Design and Quality of Parking – 2.59 (19th) • Family Involvement in Hospital – 2.31 (24th) • Children Involvement in Hospital – 2.12 (26th)

19. Family Relationship Subscales We are doing these fairly well: • Family Participation and Involvement • Togetherness During Normal Times • Improved Satisfaction Due to PFCC • Procedures and Treatment Within Rooms Not as well: • Clear Definition of PFCC • Togetherness During Critical Times • Improved Retention Due to PFCC • Family Involvement in Hospital • Children Involvement in Hospital

20. How can families be involved at Children’s? • Care Delivery Decision-making • Clinical policy • Care delivery model • Care planning • Clinical staff training • Patient & Family educational materials • Hospital Operations • Committee membership • Involvement in decisions about daily operations • Facilities • Planning for expansion • Renovations of existing facilities • Human Resources • Job descriptions • Hiring tools • Hiring processes

21. Survey Findings as Roadmap • Established hospital PFCC committee - reports to senior leadership • Attended FCC Hospitals Moving Forward workshops – 2005, 2007 • Formed task force working in tandem with hospital committee • Action-planning implementation of PFCC using survey data as roadmap

22. Survey Findings as Roadmap • Family Participation and Involvement • In our institution, families are always involved in assessing their child's symptoms • Action? • In our institution, families are always involved in evaluating their child's response treatment • Action? • In our institution, families are always involved in developing the plan of patient care • Action? • In our institution, families are always involved in providing patient care • Action? • In our institution, families are always involved in developing the discharge plan • Action?

23. Survey Findings as Roadmap • Togetherness During Normal Times • In our institution, families are always allowed to remain with their child 24 hours per day (unrestricted visiting) • Action? • In our institution, families are always allowed to remain with their child for change of shift reports (nursing) • Action? • In our institution, families are always allowed to remain with their child for physician rounds • Action? • In our institution, families are always allowed to remain with their child during procedures that are not too invasive (e.g., needlesticks, dressing changes) • Action?

24. Survey Findings as Roadmap • Clear Definition of PFCC • In our institution, families always define who family is for each patient • Action? • In our institution, families always have access to family peer support • Action? • In our institution, patients and families always participate in staff education or orientation • Action? • In our institution, job descriptions for staff always include essential patient-family-centered care concepts • Action? • In our institution, performance reviews of staff always include patient-family-centered care concepts • Action?

25. Survey Findings as Roadmap • Togetherness During Critical Times • In our institution, families are always allowed to remain with their child during procedures that are invasive (e.g., chest tube insertion, endotracheal intubation) • Action? • In our institution, families are always allowed to remain with their child during cardiopulmonary resuscitation • Action? • In our institution, families are always allowed to remain with their child during pre-surgical anesthetic induction • Action? • In our institution, families are always allowed to remain with their child during immediate postoperative recovery • Action?

26. Future Opportunities • Use survey as ongoing educational tool • Publish findings in peer reviewed journal • Explore opportunity to partner at national level • Develop tool to benchmark adult facilities • Offer survey annually to interested facilities, providing data reports • Drive implementation of PFCC by persuading decision makers with data. • Measure outcomes – correlate improvements • “Data persuades. Passion motivates.”