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Title: Toolkit for Person-Centeredness in Assisted Living


Abstract: The Toolkit for Person-Centeredness in Assisted Living aims to help assisted living providers benchmark and monitor their person-centered practices. The Toolkit includes
questionnaires to be completed by assisted living residents and staff that measure Person-Centered Practices in Assisted Living, and are called the PC-PAL. The PC-PAL questionnaires are accompanied by simple, easy-to-follow instructions for scoring and interpreting the results.

The PC-PAL questionnaires were developed through a close community-based participatory research partnership between the University of North Carolina at Chapel Hill and the national Center for Excellence in Assisted Living (CEAL), along with assisted living providers, residents, family members, and organizational representatives. Unlike other questionnaires that often are used, the PC-PAL questionnaires are based on research evidence and have been rigorously tested for ease of use and statistical validity.

The Toolkit and PC-PAL were designed to be used by all researchers and community members, but is especially aimed towards stakeholders in the long-term care community, who may include long-term care and aging researchers, residents, family members, practitioners, policy-makers, advocates, corporate entities, and students.


Type of Product: PDF document


Year Created: 2014


Date Published: 11/25/2014

Author Information

Corresponding Author
Lauren Cohen
University of North Carolina at Chapel Hill
725 Martin Luther King Jr Blvd
Chapel Hill, NC 27599
United States
p: 9198438874
lauren_cohen@unc.edu

Authors (listed in order of authorship):
Sheryl Zimmerman
University of North Carolina at Chapel Hill

Lauren Cohen
University of North Carolina at Chapel Hill

Jackie Pinkowitz
Center for Excellence in Assisted Living

Josh Allen
Center for Excellence in Assisted Living

David Reed
University of North Carolina at Chapel Hill

Walter Coffey
LeadingAge Georgia

Michael Lepore
RTI International

Pat Giorgio
National Center for Assisted Living

Jayne Clairmont
English Rose Suites

Peter Reed
University of Nevada

Philip Sloane
University of North Carolina at Chapel Hill

Lisa Demeter
The Chelsea at Tinton Falls

Bob Detrick
The Chelsea at Tinton Falls

Susan Frazier
The Green House Project

Product Description and Application Narrative Submitted by Corresponding Author

What general topics does your product address?

Public Health, Social & Behavioral Sciences


What specific topics does your product address?

Community health , Health care quality, Health services research, Housing, Institutional change , Interdisciplinary collaboration, Community-based participatory research


Does your product focus on a specific population(s)?

Disabled, Seniors


What methodological approaches were used in the development of your product, or are discussed in your product?

Community-academic partnership, Community-based participatory research , Focus group , Quantitative research, Survey, Interview


What resource type(s) best describe(s) your product?

Evaluation tool


Application Narrative

1. Please provide a 1600 character abstract describing your product, its intended use and the audiences for which it would be appropriate.*

The Toolkit for Person-Centeredness in Assisted Living aims to help assisted living providers benchmark and monitor their person-centered practices. The Toolkit includes
questionnaires to be completed by assisted living residents and staff that measure Person-Centered Practices in Assisted Living, and are called the PC-PAL. The PC-PAL questionnaires are accompanied by simple, easy-to-follow instructions for scoring and interpreting the results.

The PC-PAL questionnaires were developed through a close community-based participatory research partnership between the University of North Carolina at Chapel Hill and the national Center for Excellence in Assisted Living (CEAL), along with assisted living providers, residents, family members, and organizational representatives. Unlike other questionnaires that often are used, the PC-PAL questionnaires are based on research evidence and have been rigorously tested for ease of use and statistical validity.

The Toolkit and PC-PAL were designed to be used by all researchers and community members, but is especially aimed towards stakeholders in the long-term care community, who may include long-term care and aging researchers, residents, family members, practitioners, policy-makers, advocates, corporate entities, and students.


2. What are the goals of the product?

In assisted living and similar long-term care settings, “person-centered” practices are those that center around and are decided by the resident who lives there. Person-centeredness is a broad concept, which can make it challenging to assure and measure. The Toolkit for Person-Centeredness in Assisted Living aims to help assisted living providers (and other long-term care stakeholders) do just this, by presenting research quality questionnaires that can be easily scored and used to benchmark and monitor their person-centered practices. The PC-PAL questionnaires included in the Toolkit were developed with and tested by real assisted living residents and staff, and so reflect the areas of care that truly matter to these stakeholder groups.

The PC-PAL questionnaires are self-administered, take fewer than 20 minutes to complete, and are applicable across a wide range of assisted living residence types. The PC-PAL is easily interpreted, with scoring instructions included. Scores may identify areas where improvement is needed, and regular use can monitor changes over time.

The culture change movement in long-term care is vigorously promoting person-centeredness, and the Affordable Care Act and Centers for Medicare and Medicaid Services require assisted living be person-centered. By using the PC-PAL, assisted living providers can accurately and reliably measure their person-centeredness, identify areas for change, and evaluate ongoing improvement. Widespread use of the PC-PAL will further efforts in promoting and achieving person-centeredness in assisted living.


3. Who are the intended audiences or expected users of the product?

This Toolkit was developed especially for assisted living providers, residents, families, and staff, but is relevant to all stakeholders in the long-term care community, including researchers in long-term care and aging, practitioners, policy-makers, advocates, corporate entities, and
students.


4. Please provide any special instructions for successful use of the product, if necessary. If your product has been previously published, please provide the appropriate citation below.

The Toolkit includes detailed instructions and answers to "frequently asked questions," intended to facilitate widespread use and adoption of the PC-PAL questionnaires.

Although neither the Toolkit nor PC-PAL have been published, a research article detailing the development and psychometric testing of the PC-PAL has been accepted for publication. The citation follows.

Zimmerman S, Allen J, Cohen LW, Pinkowitz J, Reed D, Coffey WO, Reed P, Lepore M, Sloane PD, for the University of North Carolina-Center for Excellence in Assisted Living Collaborative. A measure of person-centered practices in assisted living: The PC-PAL. Journal of the American Medical Directors Association, in press.


5. Please describe how your product or the project that resulted in the product builds on a relevant field, discipline or prior work. You may cite the literature and provide a bibliography in the next question if appropriate.

Almost one million older and dependent adults in the United States live and receive care in assisted living (AL), those settings licensed by states to provide at least two meals a day, scheduled and unscheduled supportive care, and 24-hour oversight (1,2). Over the last twenty years, the number of AL beds increased 97% (to almost 1.2 million beds), while the number of nursing home beds grew by only 7% (to 1.7 million beds), an increase largely fueled by the perception that moving to a nursing home is a “dreaded event”(3,4). Thus, AL mushroomed as an intended solution to the institutional nature of nursing home care. However, despite the promise and appeal of AL, concerns have been voiced that the care they provide is impersonal and custodial and fails to promote the optimal well-being that was intended. Further, reports have become commonplace of matters such as improper care, neglect, and forced transfer (5-10). As a result, hopes that AL would be a landmark improvement in long-term care for our nation’s older adults have given way to concerns about quality.

Assisted living began as an alternative to nursing homes that would be person-centered. However, as the industry has grown, and as calls for stricter regulation have become more strident, the lack of valid, reliable, well-accepted measures of person-centered care has been driving regulators to adopt the traditional, medical-model focused quality measures used in nursing homes. Therefore, we are at a tipping point in AL care, wherein it is timely and urgent to develop and promote measures that can foster the promising alternative that was initially envisioned by AL developers. The goal of this community-based participatory research (CBPR) project conducted by an established partnership (11) was to address this urgent need by developing a toolkit of valid and reliable measures of person-centered care and outcomes for use by AL administrators, staff, residents, their families, and others, to improve care and outcomes.


6. Please provide a bibliography for work cited above or in other parts of this application. Provide full references, in the order sited in the text (i.e. according to number order). .

1. Mollica R, O'Keeffe J, Sims-Kastelein K. Residential care and assisted living compendium: 2007, Section 1: Overview of residential care and assisted living policy. Washington, DC: U.S. Department of Health and Human Services, Office of Disability, Aging, and Long-Tem Care Policy; 2007.
2. Zimmerman S, Sloane PD, Eckert JK, Gruber-Baldini AL, Morgan LA, Hebel JR, Chen C.
K. How good is assisted living? Findings and implications from an outcomes study. J Gerontol B Sci Soc Sci 2005;60B:195-204.
3. Harrington D et al. Trends in the supply of long-term care facilities and beds in the United States. J Appl Gerontol 2005;24(4):265-282.
4. Rabig J, Thomas W, Kane RA, Cutler LJ, McAlilly S. Radical redesign of nursing homes: Applying the Green House concept in Tupelo, Mississippi. Gerontologist 2006;46:533-539.
5. Gelhaus L. Assisted living has highest claim severity. Provider 2008; 16.
6. McLeister D. Assisted living facilities: The good, the bad & the deadly. Consumer Digest 2004;September/October:59-62.
7. Smith G. Lax rules can put assisted-living patients at risk. The Post and Courier in
Charleston. Available at
http://archives.postandcourier.com/archive/arch04/0704/arc07251837767.shtml. Accessed July 17, 2004.
8. McCoy K. Patchwork of laws, few inspections can spell trouble. USA Today 2004; July.
9. Terrazzano L, Laikin E. Who’s watching – the wanderers. Newsday 2004; April.
10. Utz R L. Assisted living: The philosophical challenges of everyday practice. J Appl Gerontol 2003; 22(3):379-404.
11. Love K, Zimmerman S, Cohen LW, The CEAL-UNC Collaborative. A manual for community based participatory research: Using research to improve practice and inform policy in assisted living. CES4Health.info, 2009.
12. Center for Excellence in Assisted Living. Person-centered care in assisted living: An informational guide. 2010 [on-line]. Available at http://www.theceal.org/component/k2/item/644. Accessed June 17, 2014.


7. Please describe the project or body of work from which the submitted product developed. Describe the ways that community and academic/institutional expertise contributed to the project. Pay particular attention to demonstrating the quality or rigor of the work:

  • For research-related work, describe (if relevant) study aims, design, sample, measurement instruments, and analysis and interpretation. Discuss how you verified the accuracy of your data.
  • For education-related work, describe (if relevant) any needs assessment conducted, learning objectives, educational strategies incorporated, and evaluation of learning.
  • For other types of work, discuss how the project was developed and reasons for the methodological choices made.

The project used a community-based participatory research (CBPR) approach (11) to achieve the following aims:
(1) determine the key components of person-centered care, both conceptually and operationally;
(2) conduct cognitive testing of the items derived under Aim 1, obtaining feedback from AL residents and staff, and revise or delete items as indicated;
(3) test the toolkit of revised items among AL residents and staff, by (a) evaluating the feasibility of administration; (b) conducting factor analysis; and (c) examining construct (convergent and
discriminant) validity.

Aims were achieved through a conceptually-driven (12) literature review to compile items descriptive of person-centeredness; these were iteratively operationalized into draft questionnaires that included 75 (resident) and 102 (staff) items. Respondents reported the extent to which they disagreed or agreed with each item on a four-point Likert scale. A few questions were framed in the negative to mitigate concerns of acquiescence bias.

Cognitive testing was conducted with eight residents and eight staff in two AL residences. Respondents completed the self-administered questionnaire and then were asked their understanding of and why they answered select questions as they did, questions that were unclear, and whether important items were missing. Revisions were made accordingly and the questionnaires field tested in a sample of 19 AL residences, stratified by size and affiliation.

Discriminant validity was assessed by examining whether scale and subscale scores discriminated among residences. Convergent validity was assessed using analysis of variance to test association with two other measures. Linear mixed models estimated mean values of the PC-PAL associated with one standard deviation below and above the mean value for each measure. Questionnaires with fewer than 70% of the items completed or questions completed by fewer than 70% of respondents were discarded. Exploratory factor analyses were completed using oblique rotation. The number of factors retained was informed by the eigenvalue-greater-than-one criterion, scree plot, and judgment regarding the factor's meaningfulness.

Questionnaires were completed by 228 residents (51%) and 123 staff (23%); all implicitly consented to participate per a survey cover page. Data for 28 residents and 1 staff who completed <70% of items were omitted. Sixteen items in the resident and one in the staff versions were completed by <70% and were excluded. Six items in the resident questionnaire that were stated in a negative way yet correlated positively with the sum of positively stated items were excluded.

Residents were primarily white (93%) females (73%), and half (49%) had been living there more than 2 years. Four factors were identified in the Resident PC-PAL. Inclusion of items was restricted to those with factor loadings =0.4, resulting in a 49 item questionnaire; the four factors accounted for 50% of the explained variance in the total score. Correlations among the factors ranged from .30-.67. The overall alpha was .96 and ranged from .85-.94 across subscales. Overall, 82% of the range was used.

Staff were primarily white (56%) females (94%) who had been working there more than 2 years (62%); one-half (48%) reported they were a personal care assistant or medication technician. Five factors were extracted in the Staff PC-PAL. Items with factor loadings =0.5 (slightly larger than for residents due to the smaller sample) were retained, resulting in a 62 item questionnaire. The five factors accounted for 54% of the variance, and correlations among the factors ranged from .29-.49. The overall alpha was .96 and ranged from .81-.95 across subscales. Overall, 54% of the range was used.

The PC-PAL questionnaires discriminated among residences (p<.05) and showed convergent validity by significantly relating to the other measures of culture change (resident and staff) and person-directed care (staff).


8. Please describe the process of developing the product, including the ways that community and academic/institutional expertise were integrated in the development of this product.

The CBPR team previously partnered together on a research project to study medication management in assisted living; of note, a manual to guide community based participatory research resulted from that effort (11). This manual provided the framework and guiding principles for this current partnerhsip.

At the conclusion of data collection and analysis (as described in item 7), the study results were shared with the entire CBPR team. As is often the case, many decisions had to be made about the data and results (e.g., what would be the cutpoint for considering a questionnaire completed; what did the factors represent). The entire CBPR team participated in this decision-making process. Data were re-analyzed as needed, and presented to the group each time for review. Thus, the final PC-PAL represents the perspectives of the community and research stakeholders, and is both rigorously-tested and relevant.

The group then worked to package the PC-PAL questionnnaires within a comprehensive Toolkit. This Toolkit intends to provide background on the rationale for and development of the questionnaires, and also on their use, scoring, and interpretation. The CBPR team continued to meet regularly throughout the creation of the Toolkit, iteratively creating and revising drafts to ensure the full range of perspectives were represented.

Final versions of the Toolkit were then shared with the organization that each member represented, so as to elicit their formal endorsement. Each member (and in many instances his/her organization) then disseminated a press release to inform their constituencies about the release of the Toolkit. Two member organizations (The University of North Carolina at Chapel Hil and the Center for Excellence in Assisted Living) also posted links to the Toolkit on their websites.


9. Please discuss the significance and impact of your product. In your response, discuss ways your product has added to existing knowledge and benefited the community; ways others may have utilized your product; and any relevant evaluation data about impact, if available. If the impact of the product is not yet known, discuss its potential significance.

Person-centered care is increasingly recognized as the gold standard for long-term care providers and settings, and AL is no exception. The Centers for Medicare & Medicaid Services’ vision statement for the Disabled and Elderly Health Programs Group promotes “a long-term support system where the person is at the center” and the Alzheimer’s Association practice recommendations “are based on person-centered care.” Despite this focus, evidence suggests that AL residences are not as person-centered as desired.

One manner to change care and outcomes is through external oversight, which is already in place through state government inspections of AL residences. The argument against increased oversight in AL is that it will squelch the variety of AL. The second manner to change care and outcomes is internally, by providing AL administrators and staff with tools to assess, modify, and monitor their performance so that it is purposive, related to important outcomes, and consistent with the very principles of “assisted living”: providing personalized supportive and health-related care that promotes choice, independence, and dignity, and avoids the visual and procedural characteristics of an “institutional” setting.

The PC-PAL represents the first evidence-based, rigorously-tested measure designed specifically to benchmark and monitor person-centeredness in AL. Its use is supported by leading national AL organizations, including the American Assisted Living Nurses Association, Assisted Living Federation of America, American Seniors Housing Association, the Center for Excellence in Assisted Living, LeadingAge, National Center for Assisted Living, and Planetree. The PC-PAL has been distributed via numerous electronic routes, presented at national conferences, and featured in press releases. Multiple organizations and individuals have contacted the CBPR team to laud the availability of this tool and request permission to use it. The PC-PAL has the potential to improve person-centered care in AL and inform care practices across many settings.


10. Please describe why you chose the presentation format you did.

The CBPR team chose the Toolkit format and product because it is a medium that allows for in-depth presentation of the PC-PAL and its administration, scoring, and interpretation, yet does so in a user-friendly way. Importantly, this format allows us to share this product both electronically and in traditional, hard-copy format. This latter format can be especially important in ensuring access to stakeholders who might not have internet – or even computer – access. Indeed, long-term care communities (especially smaller and rural sites) often do not have available and updated computer equipment; this lack of access was an important consideration when deciding to create the PC-PAL questionnaires in a format suitable for both online and print presentation.


11. Please reflect on the strengths and limitations of your product. In what ways did community and academic/institutional collaborators provide feedback and how was such feedback used? Include relevant evaluation data about strengths and limitations if available.

The preeminent strength of the Toolkit and PC-PAL is that it is a psychometrically sound, research-quality questionnaire developed from a practice and community-centered foundation. As descibed, the community and research partners collaborated through all phases of the research project that developed the PC-PAL, and ensured that all decisions and resultant materials reflected the perspectives of the research and community (e.g., AL providers, residents, family members, and organizational representatives) partners. Partner feedback was equitably considered; at times, a community member's perspective might have been weighted more heavily (if, for example, the decision point was related to what terminology resonates best with AL staff ) while at other times, a research partner may have held final decision-making responsibility (such as when deciding what analytic approach was most appropriate). The entire collaborative team was involved in – and approves of – the final Toolkit, ensuring that it both captures the realm of experiences of a diverse team and also that it is relevant and understandable to a broad audience. Of note, multiple research and community partners have or will present the Toolkit at academic and industry conferences, further demonstrating the ownership that all partners rightly feel.

The CBPR team is confident that the two PC-PAL questionnaires reflect the perspectives of AL residents and staff. One weakness of the Toolkit, however, is that it does not include questionnaires to reflect the perspectives of other key AL stakeholders - namely families. The Toolkit also may not accurately capture the full range of resident perspectives, as residents must be cognitively capable of reading and responding to the PC-PAL. We hope to address both of these limitations in future work, and the Toolkit provides guidance in these areas.

Of course, the practical constraints associated with conducting a research project are a limitation of the project and the product. For example, the partners routinely felt pressured to adhere to agreed-upon timelines, and so in some instances potentially rich discussions about the research project or product were abbreviated. Further, the majority of partners were not monetarily reimbursed for their participation; thus, it is likely that it was sometimes difficult for members to juggle the partnership demands with those of their other duties. Still, based on the tangible outcome, it seems that the CBPR partnership fared very well, and the time and effort devoted to organizing and optimizing the partnership and project were beneficial.


12. Please describe ways that the project resulting in the product involved collaboration that embodied principles of mutual respect, shared work and shared credit. If different, describe ways that the product itself involved collaboration that embodied principles of mutual respect, shared work and shared credit. Have all collaborators on the product been notified of and approved submission of the product to CES4Health.info? If not, why not? Please indicate whether the project resulting in the product was approved by an Institutional Review Board (IRB) and/or community-based review mechanism, if applicable, and provide the name(s) of the IRB/mechanism.

The principles of mutual respect, shared work, and shared credit were central to the conduct of this project and throughout the creation of the Toolkit and PC-PAL. During the conduct of the research project, for example, there were many times during which the varied background and perspective of collaborative members could have proven a hindrance. By ensuring all partners were equitably engaged in all phases of the research project, however, all voices and perspectives were heard and represented, and the work was equitably distributed. The experience of having partnered together in a previous CBPR project - and the availability of the CBPR manual to guide our efforts - were helpful in identifying and overcoming prospective challenges.

The principle of shared credit has been especially discussed by the collaborative team, due largely to the creation of the Toolkit, and also the other manuscripts describing the findings of the research study. In multiple meetings the collaborative members have discussed the concepts of ownership and credit, and while all members do feel ownership, none feel possessive of the project or product. All members have the authority to discuss the project and product and his/her role in it to their own constituencies, and several members have presented the research findings at trade shows and professional conferences.

All members are aware of and support this submission to CES4Health, and believe that the authorship is appropriate and reflects the contribution of time and resources made by each member.

This project was reviewed and approved by the Institutional Review Board of the University of North Carolina at Chapel Hill. All CBPR members received Human Research Ethics Training. All research participants provided informed consent.