PC-PAL: USING METRICS TO MEASURE PERSONCENTERED PRACTICES Maribeth Bersani Senior Vice-President, ALFA Sheryl Zimmerman Professor, UNC-CH
The Movement ▶
Pioneers started the assisted living movement 25 years ago
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Goal: Develop a residential alternative to skilled nursing facilities
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Consumer driven, resident centered
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News flash: Residents, not staff, regulators or even families, make the decisions
Enemy # 1
Founding Principles of Assisted Living ▶
Choice
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Dignity
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Independence
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Respect
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All lead to PCC
How Do We Define PCC ? ▶
We know it when we see it
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Creating pleasant days
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Purposeful living
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Individualized care plans
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Quality of life
Moments of Joy
Purpose and Meaning
Choice
Challenges ▶
No one size fits all
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Balancing choice with risk and safety
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State regulatory requirements
The Bar Has Been Raised ▶
PCC: the new normal
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Residents, families, regulators expect it
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CMS Home and Community Based Waiver Rule
How Do You Know if You Are Delivering PCC? You will have the tools you need at the end of this session ▶ Why do we need to measure? – We need to demonstrate to law makers, regulators, media and families that we are delivering PCC – Consumers can make a better informed choice on where to live ▶
Keep up the Great Work ▶
94% of AL residents say they are satisfied or very satisfied with the overall quality of life in their AL community
“Older people need a dream as well as a memory” Dr. Arthur Flemming 1995 White House Conference on Aging
Person-‐Centered Care How would your residents answer these ques9ons (and 46 others)? Strongly Disagree Disagree
Agree
Strongly Agree
The ac'vi'es here are meaningful to me.
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I have the privacy I want when I receive my medica'ons.
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Caregivers, administrators, and other staff introduced me to residents who have common interests so we could develop friendships.
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Why?
Person-‐Centered Care How would your staff answer these ques9ons (and 59 others)? Strongly Disagree Disagree
Agree
Strongly Agree
My feedback is welcomed and responded to.
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There are social events that everyone (residents, families, caregivers, administra've staff) can enjoy together.
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My performance review includes how well I help residents according to their personal preferences and goals.
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Why?
A Collabora9ve Research Project to Develop a Measure of Person-‐Centeredness in Assisted Living Sheryl Zimmerman, Lauren Cohen, David Reed, Philip Sloane Cecil G. Sheps Center for Health Services Research University of North Carolina at Chapel Hill
Josh Allen, Jackie Pinkowitz
Center for Excellence in Assisted Living
Jayne Clairmont, Walter Coffey, Lisa Demeter, Susan Frazier, Pat Giorgio, Michael Lepore, Peter Reed Community Partners Supported by the Na/onal Ins/tute on Aging Grant R21 AG038808
My Personal Interest
CEAL White Paper Person-‐Centered Care To provide care and support in a dignified, respecHul manner that honors personal choice, interests, and needs, including having control over decisions that affect daily life; and to maintain normalcy in daily rou'nes including having meaningful and interes'ng things to do
CEAL White Paper Domains of Person-‐Centered Care 1. Core values and philosophy (personhood, respect, dignity, autonomy, independence, choice, privacy) 2. Rela'onships and community 3. Senior management/ownership/governance 4. Leadership 5. Workforce 6. Services 7. Meaningful life 8. Environment 9. Accountability
UNC-‐CEAL Research Project
Aim: Use community-‐based par'cipatory research to develop research quality self-‐administered measures of person-‐centered care (PCC) from the perspec've of residents and staff
Partners
The Center for Excellence in Assisted Living (CEAL) A collabora've of 11 na'onal organiza'ons working together to promote excellence in assisted living
(AALNA, AARP, ALFA, Alzheimer’s Associa'on, ASHA, CCAL, LeadingAge, NCAL, NCB, Pioneer Network, Paralyzed Veterans)
The University of North Carolina at Chapel Hill (UNC) An interdisciplinary team of scholars conduc'ng research to promote quality of life and long-‐term care Community members, organiza9onal representa9ves Other key stakeholders relevant to the mission at hand
UNC-‐CEAL Research Project 1. Conduct literature search to iden'fy specific acributes/indictors of PCC; develop measurable ques'onnaire items for each one 2. Cogni'vely test ques'onnaires in two assisted living communi'es; discuss results and revise items 3. Test ques'onnaires in 19 assisted living communi'es 4. Review results and reach consensus about findings and implica'ons for prac'ce and policy 5. Disseminate findings and advocate use
Literature Review Person-‐centered Resident-‐centered Pa'ent-‐centered Family-‐centered Person-‐centered care Resident-‐centered care Pa'ent-‐centered care Family-‐centered care Person-‐directed care Resident-‐directed care Pa'ent-‐directed care Family-‐directed care Person-‐centeredness Resident-‐centeredness Pa'ent-‐centeredness Family-‐centeredness Personhood Culture change Eden Alterna've Green House Homes Wellspring Planetree Ar'facts (of Culture Change) Pa'ent-‐Environment Transac'on Experience of Home
CMS/HCBS division FutureAge Provider LTC Living Eden Alterna've CARF Ins'tute for Caregiver Educa'on Kansas Founda'on for Medical Care Colorado Founda'on for Medical Care Green House Project Wellspring Planetree American College of Health Care Administrators Center for Excellence in Assisted Living Na'onal Resource Center for Par'cipant-‐Directed Services PC experts Council on Quality and Leadership Ins'tute for Pa'ent & Family-‐Centered Care Names of known experts and authors in the field
Domain Ques9onnaire
Each person is a unique individual with his/her own background, interests, needs, preferences, daily rou'nes, capabili'es, cultural/spiritual/ethnic prac'ces, lifestyle preferences and hobbies, and personality traits.
I receive care and services according to my life history, personal preferences, and goals. And many others ….
Collabora9ve Item Development “The woman hit the man with the umbrella” What happened?
“Should people get the flu shot?” Which people? “Do you eat five fruits and vegetables a day?” How many?
“Do you eat five fruits and vegetables a day?” Do both macer?
“How much television do you watch?” What macers?
Who thinks like that when they answer?
Ques9onnaires Â
Ques9onnaires Resident Staff
Cogni9ve Tes9ng
Design: Two assisted living communi'es; 4 residents, 8 staff Eligibility: Living/working there at least three months; able to complete ques'onnaire independently
Complete ques'onnaire Put ques'ons in own
words and explain why gave that answer
Cogni9ve Test: Results Resident Staff
Comple'on 'me: C omple'on 'me: 16 minutes 18 minutes Ques'ons modified for clarity
Example I have the choice for staff to update other residents about how I am doing if I am in the hospital If I am in the hospital, I have the choice …
Ques'ons modified for clarity
Example The same staff members usually assist the same residents The same caregivers usually assist…
Ques9onnaire Tes9ng Design: 19 assisted living communi'es of varying size in 6 states RESIDENT Eligibility and Response N (%)
STAFF Eligibility and Response N (%)
Total residents
1,008
Total staff
722
Ineligible
544 (54%)
Ineligible
176 (24%)
Cogni9vely impaired
375 (71%)
Younger than 21
77 (44%)
Physically impaired
80 (15%)
Employed < 3 months
95 (54%)
Lived in AL < 3 months
88 (16%)
Non-‐English speaking
4 (2%)
Non-‐English speaking
1 (<1%)
Eligible
546 (76%)
Completed ques9onnaire
123 (23%)
Eligible
464 (46%)
Completed ques9onnaire
231 (50%)
Collabora9ve Data Analysis Aim: Use community-‐based par'cipatory research to develop research quality self-‐administered measures of person-‐centered care from the perspec've of residents and staff. Key ques9on: What is person-‐centered care to residents and staff? Analy9c method: Factor analysis
Factor Analysis • Sta's'cal method to test and simplify/shorten ques'onnaires • Looks for rela'onship in how people answer ques'ons
• Examining rela'onships iden'fies the underlying concept similar to all ques'ons (i.e., the team iden'fies the underlying “factor”) Work life Popcorn Pizza
Health -‐ -‐ -‐ -‐
Func9on BMI Chronic Illnesses Energy condi9ons Energy
-‐ Workload -‐ Respect -‐ Pay Personal life -‐ Family -‐ Hobbies -‐ Friends
Honda Toyota
Shoe Blond size Brunece
Factor Analysis • Sta's'cal method to test and simplify/shorten ques'onnaires • Looks for rela'onship in how people answer ques'ons
• Examining rela'onships iden'fies the underlying concept similar to all ques'ons (i.e., the team iden'fies the underlying “factor”) Work life
Snacks Popcorn Pizza
Health -‐ -‐ -‐ -‐
Func9on BMI Chronic Illnesses Energy condi9ons Energy
-‐ Workload -‐ Respect -‐ Pay Personal life -‐ Family -‐ Hobbies -‐ Friends
Cars Honda Toyota Hair Shoe Blond size Brunece
Data Analysis Factor analysis requires complete data
Decisions
Respondents must answer at least 70% of ques'ons, as fewer suggest: • Do not understand ques'ons • Not able to respond to ques'ons
Individual ques'ons must be answered (SD, D, A, or SA) by at least 70% of respondents, as fewer suggest: • Ques'on is confusing • Respondents don’t know the answer
Factor Name: • When I moved in, my family was welcomed and provided informa9on about the ac9vi9es and services. • There are social events that everyone (residents, families, caregivers, and administra9ve staff) can enjoy together. • There are ac9vi9es here that include people from outside the community, including children. • Transporta9on is provided to go to places and ac9vi9es outside of the assisted living community. • I have the opportunity to go outdoors as much as I want to. • When I am in pain or discomfort, caregivers take steps to relieve it. • Many types of caregiving and administra9ve staff spend 9me with me doing interes9ng ac9vi9es. • I can take part in daily ac9vi9es and spend 9me with other people, as liile or as much as I want. • There are different types of ac9vi9es that are interes9ng to do here. • Overall, I am sa9sfied with my family’s inclusion in this assisted living community.
Factor: Social Connectedness and Rela9onships • When I moved in, my family was welcomed and provided informa9on about the ac9vi9es and services. • There are social events that everyone (residents, families, caregivers, and administra9ve staff) can enjoy together. • There are ac9vi9es here that include people from outside the community, including children. • Transporta9on is provided to go to places and ac9vi9es outside of the assisted living community. • I have the opportunity to go outdoors as much as I want to. • When I am in pain or discomfort, caregivers take steps to relieve it. • Many types of caregiving and administra9ve staff spend 9me with me doing interes9ng ac9vi9es. • I can take part in daily ac9vi9es and spend 9me with other people, as liile or as much as I want. • There are different types of ac9vi9es that are interes9ng to do here. • Overall, I am sa9sfied with my family’s inclusion in this assisted living community.
Resident Factors (49 items) Well-‐being and Belonging (18 items) -‐ -‐ -‐
It feels like home. MealDmes are pleasant and enjoyable for me. Overall, I am saDsfied with the acDviDes here and how they are provided.
Social Connectedness and Rela9onships ( 10 items) -‐ -‐
Individualized Care and Services (12 items) -‐ -‐ -‐
Caregivers, administraDve, and other staff address me using my preferred name. I am involved in planning my care and services. I have the privacy I want when I receive my medicaDons.
TransportaDon is provided to go to places and acDviDes outside of the assisted living community. I can take part in daily acDviDes, and spend Dme with other people, as liJle or as much as I want.
Atmosphere (9 items) -‐ -‐ -‐
It is difficult to get around here. Caregivers and administraDve staff don’t know what is meaningful to me. Overall, I don’t like the food that is served here.
Other (26) Resident Items -‐ -‐
Well-‐being and Belonging EXAMPLES (18 items) It feels like home. MealDmes are pleasant and enjoyable for me. Overall, I am saDsfied with the acDviDes here and how they are provided.
• Grief and healing support is available to residents, -‐ families, caregivers, and other staff aper someone dies. • Residents complete sa'sfac'on surveys at least once Individualized Care a re shared with everyone. a year, and the results and Services (12 items)
administraDve, nd if I want to. • I -‐ cCaregivers, an keep a pet haere other staff address me using my preferred name. I am involved in planning my care and services. I have the privacy I want when I receive my medicaDons.
• My family members can have input into policies and -‐ prac'ces here. -‐
Staff Factors (62 items) Social Connectedness ( 16 items)
Workplace Prac9ces (23 items) -‐ -‐ -‐
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My feedback is welcomed and responded to. The workload is distributed fairly among staff. The staff work well together.
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Caregiver-‐Resident Rela9onships (7 items)
Caregivers treat finishing their work as more important than Individualized Care meeDng resident needs and personal preferences.
TransportaDon is provided to go to places and acDviDes outside of the assisted living community. Residents can take part in daily acDviDes, and spend Dme with other people, as liJle or as much as they want.
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and Services (8 items) -‐
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Caregivers respect and know residents’ abiliDes, life history, needs, and personal preferences. Residents have the privacy they want when they receive their medicaDons.
Atmosphere (8 items) -‐ -‐ -‐
It is difficult to get around here. Caregivers ignore residents’ concerns. It is noisy at night.
Other (40) Staff Items -‐ -‐
Well-‐being and Belonging EXAMPLES (18 items) It feels like home. MealDmes are pleasant and enjoyable for me. Overall, I am saDsfied with the acDviDes here and how they are provided.
• Residents complete sa'sfac'on surveys at least once -‐ a year, and the results are shared with everyone. • Residents feel a sense of belonging here. • Resident feedback and complaints are welcomed and Individualized Care responded to. and Services (12 items) -‐ Caregivers, administraDve, and • Caregivers use rac'ces other than medica'ons to other staff address me up sing my preferred name. address resident’s behavioral challenges. -‐ I am involved in planning my -‐
care and services. I have the privacy I want when I receive my medicaDons.
PC-‐PAL Toolkit Two ques9onnaires and scoring instruc9ons Residents: 49 items Staff: 62 items Addi9onal ques9ons Residents: 26 items Staff: 40 items Available at www.theceal.org www.shepscenter.unc.edu
Scoring the PC-‐PAL
Individualized Care and Services (12 items) -‐ -‐ -‐
Caregivers, administraDve, and other staff address me using my preferred name. I am involved in planning my care and services. I have the privacy I want when I receive my medicaDons.
Frequently Asked Ques9ons What is a “agood” score on the PC-‐PAL? Well-‐being nd Belonging (18 items) The h ighest possible score is 100; in tes/ng, resident -‐ It feels like home. -‐ MealDmes are pleasant 7 and scores averaged 5, and staff scores averaged 80. enjoyable for me. Overall, I am saDsfied with the acDviDes here and how they are provided.
Is -‐ it worth comparing resident and staff scores? Yes, especially in areas they both considered reflected person-‐centeredness. Do sIndividualized cores on Cthe are s eparate areas macer? and Services (12 items) Yes, they allow understanding of where care may be -‐ Caregivers, administraDve, and beNer or address indicate other staff me using room for improvement. my preferred name. I am involved in planning my care and services. I have the privacy I want when I receive my medicaDons.
-‐ Can we use this for families, and in nursing homes? -‐ Yes, but keep in mind that percep/ons of person-‐ centeredness may differ somewhat.
How Person-‐Centered Are Your Prac9ces?
Available at www.theceal.org www.shepscenter.unc.edu
Next Step: Quality Improvement
Chairman and CEO, IBM
Plan, Do, Study, Act Con'nuous QI
Administer the PC-‐PAL
Meet with staff, residents
Administer the PC-‐PAL
Jointly plan for change
Begin at the Beginning
Addi9onal Informa9on -‐ -‐
Well-‐being and Belonging (18 items)
It feels like home. MealDmes are pleasant and enjoyable for me. Overall, I am saDsfied with the acDviDes here and how they are provided.
Zimmerman et al. (2015). -‐ A Measure of Person-‐Centered Prac'ces in Assisted Living: The PC-‐PAL. AMDA -‐ The Society Individualized Care L ong-‐Term for Post-‐Acute and and Services (12 items) Care M edicine 16 (2): 132-‐137. -‐ Caregivers, administraDve, and -‐ -‐
other staff address me using my preferred name. I am involved in planning my care and services. I have the privacy I want when I receive my medicaDons.