Product Details

Author Information

Corresponding Author
Karen Love
Center for Excellence in Assisted Living
2342 Oak Street
Falls Church, VA
United States
p: (703) 533-3225
karenlove4@verizon.net

Authors (listed in order of authorship):
Karen Love
Center for Excellence in Assisted Living

Sheryl Zimmerman
The University of North Carolina at Chapel Hill

Lauren Cohen
The University of North Carolina at Chapel Hill

The CEAL-UNC Collaborative

Product Description and Application Narrative Submitted by Corresponding Author

What general topics does your product address?

Pharmacy, Public Health, Social & Behavioral Sciences, Research

What specific topics does your product address?

Community health , Health care quality, Health policy, Interdisciplinary collaboration, Research ethics, Long-term Care, Community-based participatory research

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

Seniors

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

Community-based participatory research , Quantitative research, Interview, Participant observation

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

Manual/how to guide

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 Center for Excellence in Assisted Living (CEAL) and researchers at The University of North Carolina at Chapel Hill (UNC) partnered to create a first-of-its-kind instructional manual designed to promote and guide the use of community-based participatory research (CBPR) in aging and long-term care research. This manual was informed by a two-year research grant funded by the U.S. Agency for Health Care Research and Quality that was aimed at better understanding medication management practices in long-term care. The research project employed CBPR methodology to involve the many and varied constituencies essential in designing, conducting, disseminating, and translating long-term care research. Throughout the project, the CBPR team – comprised of long-term care researchers, consumers, advocacy groups, policy-makers, practitioners, and corporate representatives – worked together to identify and create effective and efficient CBPR structures and processes. This manual details the CBPR principles and processes, and also offers specific examples of, and recommendations for, practically implementing CBPR in the field of long-term care. The manual provides examples from the medication management research project throughout, in an easily understandable format.

This manual was designed to be used by all researchers and community members, but is especially aimed towards stakeholders in the long-term care community.

2. What are the goals of the product?

The goal of the manual is to provide researchers, consumers, policy-makers, administrators, and other stakeholders who live, work, research, practice, advocate or are otherwise invested in the field of long-term care, with specific guidance on how to establish, maintain, and effectively use CBPR partnerships. By promoting CBPR as a collaborative research method, the CEAL-UNC team hopes to encourage these stakeholders to form partnerships to use research to inform practice and policy, and to translate promising findings into practice. This manual explains the principles and methods of CBPR research, and exemplifies those with real-world examples from a medication management research project conducted using the CBPR methodology in long-term care.

Given the rapidly aging population and appreciation of the need to use evidence to promote practice and policy as well as the need to promote the uptake of evidence-based findings, the goal of this manual is timely and important. First, by using a CBPR methodology, researchers will understand the information that the broader community needs to address challenges for which they are seeking solutions. Otherwise, researchers are in danger of conducting projects of lesser importance that will not promote actual change in practice or practice. As a case in point – the medication management project that informed this product was not a project that the UNC research team was planning to conduct; however, the community partners informed the research team that this was an important clinical and quality of care issue that needed further study, and so the collaborative did in fact conduct the project on that topic. Similarly, the CBPR methodology and inherent relationships allow for the rapid dissemination of research findings into evidence-based practice. Again, in the CEAL-UNC collaborative, by including administrators, policy-makers, and advocates in the collaborative group, important research findings related to correlates of medication administration errors have been disseminated to a wide audience that can rapidly affect care practices and policy changes.

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

This manual was 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.

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.

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.

Assisted living developed from a ‘social’ model of care, but has increasingly become a quasi-medical model as the acuity level of residents has been rising. More than one-half of the estimated 800,000-1.5 million assisted living residents are age 85 or older, 23-42% have moderate or severe cognitive impairment, 38-49% have a chronic heart condition, and 51% receive assistance with bathing.(1-3) Thus, the challenge is that while assisted living providers do not choose to become medical providers, they are increasingly called upon to care for the medical needs of their residents – often in the absence of medically-trained staff. Today, nearly 75% of larger assisted living communities have a licensed nurse on staff.(4) To have licensed personnel is to have higher costs, and there is a tradeoff between affordability/access and medical care.

Assisted living is regulated at a state level, and thus there is wide variation in policy and practice. Recognizing the increasing medical needs of assisted living residents and the lack of an overseeing body, in 2001 the U.S. Senate Special Committee on Aging prompted the creation of an Assisted Living Workgroup to develop guidance regarding assisted living quality. This workgroup met over a period of 18 months, and identified the issue of medication management as an area of central concern to the assisted living industry.(5) Of note, several members of CEAL were members of the Workgroup.

The regulations governing medication management vary by state; in some states, licensed nurses are required to prepare and administer medications, while in others, unlicensed staff members with site-specific training are allowed to do so. Clearly there are cost differences between these two models, however what is less known is whether or not there are significant differences in resident outcomes.

UNC and CEAL began discussions in 2004 about working together on a research project. At that time, the UNC researchers were nationally recognized in the field of aging and long-term care, however they had no formal partnership with established consumer, provider, or advocacy organizations. The CEAL representatives (comprised of advocacy, consumer, policy, and long-term care groups), meanwhile, had little experience in research. These groups chose to work together – later bringing in other stakeholders – using the CBPR methodology. The issue chosen for study was one important to CEAL, namely medication management in assisted living. At the initiation of this partnership, the collaborative became acutely aware that there was no guiding ‘how-to’ guide for such a partnership. Therefore, the group undertook the task of systematically identifying and documenting effective and efficient components of the CBPR process in the context of this project.

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. Golant SM. (2004). Do impaired older persons with health care needs occupy U.S. assisted living facilities? An analysis of six national studies. Journal of Gerontology Social Sciences, 59(2):S68-S79.
2. Hawes C, Phillips CD, Rose M, Holan S, Sherman M. (2003). A national survey of assisted living facilities. The Gerontologist, 43:875-882.
3. Zimmerman S, Gruber-Baldini AL, Sloane PD, Eckert JK, Hebel JR, Morgan LA, Stearns SC, Wildfire J, Magaziner J, Chen C. (2003). Assisted living and nursing homes: Apples and oranges? The Gerontologist, 43:107-117.
4. Zimmerman S, Sloane PD, Eckert JK, Gruber-Baldini AL, Morgan LA, Hebel JR, Magaziner J, Stearns SC, Chen CK. (2005). How good is assisted living? Findings and implications from an outcomes study. Journals of Gerontology Series B: Psychological Sciences and Social Sciences, 60:S195-S204.
5. Assisted Living Workgroup. (2003). Assuring quality in assisted living: Guidelines for federal and state policy, state regulation, and operations. A report to the U.S. Senate Special Committee on Aging. Washington, D.C.

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.

Because there were two distinct, yet interweaving goals of this project (one related to its CBPR framework and the other related to the topic of medication management), these two aims are presented separately in this section. All study procedures and materials were reviewed and approved by the Institutional Review Board of the University of North Carolina at Chapel Hill.

Aim 1. The primary objective of Aim 1 was to develop a nationally-recognized and sustainable model of community-based participatory research (CBPR) in long-term care, and to specify the design through which community and research partners can identify and prioritize problems, propose solutions, conduct studies, consider results, and translate findings. The product of Aim 1 was the creation of a comprehensive CBPR manual of procedures to be used by partnerships between other national and local provider organizations and research teams to improve the quality of long-term care. Due to constraints of space, and the fact that the conduct of this Aim is discussed throughout this application, it will not be presented in this section. However, it is worth noting that the CEAL-UNC team critically reviewed their CBPR procedures and processes through surveys of their partnership, and compared them to those of other CBPR collaboratives; this information is presented in the manual.

Aim 2. Using the CBPR methodology, project partners worked together to determine if – and to what extent – unlicensed assisted living staff can safely manage medications for residents, as compared to licensed staff. Two states with differing policies regarding the level of training required for medication administration staff were chosen for study. A stratified random sample of assisted living communities in SC (a state that permits unlicensed staff allowed to administer medications) and TN (a state that requires licensed staff to administer medications) was selected for study. After excluding ineligible facilities, the study achieved a 60% enrollment rate (11 facilities).

During the summer of 2007 the partners studied medication preparation and administration through observational, interview, and chart-based data in the 11 communities. Specifically, medication preparation and administration activities were observed over a representative two-day period in each participating site. Trained pharmacy students unobtrusively observed all medication passes that occurred on first or second shifts, and recorded the medication name, dosage, form (i.e., tablet, liquid), preparation (i.e., crushed, mixed with food), route of administration (i.e., oral, topical, inhalant), and time of administration for each medication that was given in a single pass to each resident.

For each resident for whom the data collector observed a medication being given, the data collector completed an audit of his/her medication administration record to determine the correct medication order. Then, the data collector compared the observed data to the recorded data; discrepancies between the two were considered medication errors. These errors were later classified as either having low, moderate, or high potential for harm by the CEAL-UNC partners clinically qualified to make such distinctions (e.g., the nurses, pharmacists, and geriatricians).

In addition to observational assessments, all medication staff completed a questionnaire designed to assess knowledge of common medication terms and procedures, as well as important medication knowledge that might not have been observed during the brief observation period. The questionnaire was comprised of items modified from the North Carolina Medication Technician Examination Study Guide, as well as questions created and/or adapted by the CEAL-UNC team.

The assisted living staff members also completed a demographic interview to allow examination as to what characteristics (e.g., training, education, age, years of experience) were related to the likelihood of medication errors. Information about resident characteristics was also collected, and included date of admission, year of birth, gender, dementia diagnosis, ability to make decisions independently, and a checklist of eight medical conditions. Finally, the administrator reported on setting characteristics such as size, years in operation, and number of staff as well as practices and policies related to medication management.

The analyses of these data and the ensuing results and conclusions are in preparation for publication elsewhere. Please contact Sheryl Zimmerman, PhD at sheryl_zimmerman@unc.edu for information related to the study findings.

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 product of Aim 1 was the creation of a comprehensive manual of procedures to inform researchers, consumers, policy-makers, and administrators who live, work, research, practice, advocate or are otherwise invested in the area of long-term care with specific instruction on how to establish, maintain, and effectively use CBPR partnerships. The product development occurred throughout the course of the project described in Aim 2. The sub-aims of Aim 1 are listed below in italicized font, and the germane activities for each explicated in the section following.

Establish operating norms and principles, including those that reflect the tenets of CBPR. Because of the expectation that the many different partners working together as part of the CEAL-UNC collaborative would have diverse operational styles, the partners worked together in one full-day retreat in September of 2006 and in multiple monthly meetings at the project’s inception to create operating procedures and to establish comraderie. Operating procedures included sending meeting agendas and meeting notes; following up individually with partners who were unable to attend a meeting; empowering all members to discuss the collaborative and its work at professional meetings; protecting the confidentiality of ongoing work; and obtaining training in human subjects in research ethics.

Develop and adopt a mission statement, goals, and objectives. During a monthly meeting, the project partners developed a mission statement, and agreed upon the established goals and objectives of the partnership.

Establish priority areas on which to focus. For this partnership, the priority area of medication management was a natural outgrowth of that identified by earlier CEAL efforts, and so was initially proposed as the focal topic. However, prioritizing the study of medication management is a broad mandate, and one that required the partners to use collaborative decision-making to narrow the focus to a manageable scope. The partners assessed the components of the medication management topic in the full-day September, 2006 planning retreat and then again in monthly meetings, and used equitable decision-making to choose the components of medication management to study as part of data collection activities.

Develop an organizational structure and strategies for ongoing group process. First, in recognition of the size of the collaborative, the partners formed three smaller workgroups which were tasked with different – yet purposefully overlapping – responsibilities. These workgroups included:

• The CBPR Manual Workgroup – this workgroup was initially comprised of 8 CEAL-UNC partners who met bi-monthly to discuss issues related to the practical creation of the CBPR manual.

• The Medication Management Workgroup – this workgroup was comprised of 20 partners and ad hoc advisors who met monthly to discuss and make decisions related to the conduct of the data collection component of this project.

• The Partners Workgroup – this workgroup included all of the CEAL-UNC partners and ad hoc advisors and convened quarterly to ensure that all partners were aware of and optimally involved in all workgroup activities. Additionally, the partners established nomenclature and procedures to aid in equitable and efficient decision-making.

Work with long-term care facility staff, residents, and family members to develop, conduct, and evaluate studies that promote the health and well-being of residents, using the principles of CBPR. Long-term care staff and family representatives were invited to join the CEAL-UNC collaborative. Due to the sensitive nature of data collected in this project (i.e., staff member’s ability to safely manage medication preparation and administration), and the concern that project data might be used punitively by some staff and families, staff and family members from settings that were not participating in the data collection were invited to join the collaborative’s monthly meetings. However, because of the importance of including staff from participating settings in the project, separate teleconferences were held with these individuals and a subset of the CEAL-UNC partners.

Develop an evaluation design and methods, including providing feedback to the partnership so that it may continue to evolve. The partners regularly discussed the partnership and its success. In addition, prior to two face-to-face retreats (April 2008 in Washington, DC and October 2008 in Durham, NC) all project partners completed surveys to objectively assess the partnership’s weaknesses and strengths, as well as each member’s overall satisfaction.

Manage time. The partners discussed time management during monthly workgroup meetings, and established voting guidelines to quickly and easily settle partner disagreements. In addition, the partners established ‘decision points’ to indicate when a decision required full group input versus when it could be made independently by one member of the team.

Writing the manual. The creation of the manual was an ongoing, iterative process. Throughout the conduct of the research project, the CBPR Manual Workgroup documented the systems and procedures that were developed in real time – as they took place. Thus, at the end of the project, there was a wealth of information to inform the final manual. The CBPR Manual Workgroup took a leading role in organizing the creation of the manual, however all partners were invited to contribute organizational and substantive suggestions for the manual, write chapters or sections (which many did), and to constructively review and edit all iterations of the manual. Towards the end of the manual’s creation, the entire project team met regularly to precisely edit the final manual product. After the final manual was released, all partners were also involved in disseminating the product via the many different channels specific to those varied partners.

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.

There is longstanding acceptance among public health researchers that meaningful, ongoing collaboration between communities and researchers is essential to the design and conduct of research studies to ethically address community concerns and ultimately translate research findings into sustainable gains for the community. These ideas have only recently filtered into health services research, but according to an evidence-based review conducted in 2004, few studies have used this approach to focus on the elderly, and none (save the present project) have been set in the long-term care setting. This trend is especially troubling because researchers routinely face the disconcerting fact that many promising research findings are never translated into practice, and therefore result in no improvement to the health of the population. Further, community members are discouraged by not having their opinions recognized and applied, and have grown wary of simply acting as ‘subjects’ of research. Given the rapidly accelerating aging of the population, it is critical to address these challenges so that promising breakthroughs can be recognized and community members can productively contribute to new innovations.

This manual was borne out of the experiences of a team of long-term care researchers, advocates, consumers, policy-makers, and administrators who worked together to form a maximally effective and long-standing CBPR partnership. This manual was jointly developed – and adhered to – through the conduct of a two-year research project aimed at understanding and assessing medication management in long-term care. The iterative creation process allowed this manual to capture the many challenges associated with sustaining an effective CBPR partnership, and also provided a forum for documenting the solutions.

The manual was a collaborative effort of the CEAL-UNC team; some members wrote entire chapters, others paragraphs, while still others preferred to primarily comment and edit sections others had written. Throughout the creative process, the team met every other month by teleconference to review sections, brainstorm organization, and to generally ensure that all partners’ perspectives and experiences were capture and reflected.

The manual was completed in Spring 2009, and since that time has been disseminated broadly. To date, the manual has been distributed via numerous electronic routes, including: web postings on the websites of CEAL, the Cecil G. Sheps Center for Health Services Research and the Institute on Aging at the University of North Carolina at Chapel Hill, and the National Gerontological Nursing Association; and listserv distributions from the Institute on Aging at the University of North Carolina at Chapel Hill and the CBPR listserv managed by the University of Washington. Further, the project results (with reference to the product) have been presented at the annual meeting of the Agency for Healthcare Research and Quality, the American Geriatrics Society annual conference, The University of North Carolina Aging Exchange, the Aging Services of Georgia, the Pioneer Network Annual Meeting, and the American Association of Homes and Services for the Aging conference. Numerous individuals who have accessed the manual or attended these conferences have sent e-mail letters to the CEAL-UNC team commenting on its usefulness. In addition, individuals from the University of North Carolina NIH-funded Clinical and Translational Science Award (CTSA) Institute have commented that the manual will inform their efforts related to community engagement.

This manual is valuable to a wide audience because it not only outlines the entire CBPR process with the many considerations inherent to this type of research, but it also provides easy-to-understand, real-world examples of the CBPR components’ implementation. Further, this manual is uniquely valuable because it is the first to document the CBPR process as it relates to the long-term care research agenda. Thus, this manual has potential to increase the quantity and quality of CBPR work being conducted, as well as to infiltrate the long-term care research environment with this promising collaborative and translational technique.

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

The CEAL-UNC team chose the ‘manual’ format because it is a medium that allows for in-depth presentation of the complexities of CBPR yet does so in a user-friendly way. By including a Table of Contents, the manual can either be used in entirety, or users can easily refer to only section(s) of interest. Importantly, the manual 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 manual 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 this product is that it is a unique, seminal instructional manual designed to promote and guide the use of community-based participatory research (CBPR) in aging and long-term care research. The manual was informed by a two-year research grant aimed at better understanding medication management in long-term care that employed CBPR methodology, and thus is based on actual, relevant experience. Throughout the project, the CBPR partner team – comprised of long-term care researchers, consumers, advocacy groups, policy-makers, practitioners, and corporate representatives – worked together to identify and create effective and efficient CBPR structures and processes. This manual details the principles of CBPR and also offers specific examples of, and recommendations for, practically implementing these principles in the field of long-term care. The manual provides examples from the medication management research project throughout, in an easily understandable format. The entire collaborative team was involved in – and approves of – the final manual, 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 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 abut 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 partnership evaluations that the collaborative conducted at two points in time, collaborative members were satisfied with the partnership and with the resultant project and manual. When the collaborative survey results were compared to a national survey of CBPR partnerships, the collaborative met or exceeded the benchmarks set by the national survey, suggesting that the time and effort devoted to organizing and optimizing the partnership was 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 the medication management project and throughout the creation of manual. During the conduct of the research project, for example, there were many times during which the varied background and expertise of collaborative members could have proven a hindrance, and some members could have been excluded from the collaborative decision-making process. As a case in point, during the analysis phase of the project, it became evident that many members were unfamiliar with data analysis and statistical terms. So as to empower these members to ask informed questions of the data and analyses, those members with expertise in this area created a glossary of statistical terms to aid in explaining these concepts, and discussed the findings and analyses in detail during every meeting . As another example, clinical members of the collaborative were knowledgeable about medication names and medical terms, whereas other community members were not. During all meetings, members were encouraged to ask questions – and did – and so no member was ‘left behind’ because he or she did not understand what was going on. This continual assurance of inclusion ensured that the work was shared throughout, and promoted an environment of mutual respect.

The principle of shared credit has been especially discussed by the collaborative team, due largely to the creation of the manual, 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 the interesting, counter-intuitive outcome of this discussion is that no member felt that he/she wanted or needed ‘credit’ for his/her contributions! Instead, members reported that the collaborative is a team, and they preferred for the team to receive ‘credit’ for our work, versus individual recognition. That said, 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 a poster of the research findings at trade shows and professional conferences. Thus, all members do feel ownership, but none feel possessive of the project or product.

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 CEAL-UNC Collaborative members received Human Research Ethics Training.