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Measuring Person-Centered Care

Research and analysis by ATI Advisory

Contents

Research and analysis by ATI Advisory for CareScout

Background on CareScout and the Advisory Panel

If you’ve shopped for long-term care (LTC) options for yourself or a loved one, you’ve probably run into challenges getting reliable information that enables you to distinguish between LTC providers on critical factors. You can price shop, but how do you really know which senior living provider listens to your dad and your family and treats him in a way that respects his preferences and choices? How do you know which home care agency takes the time to understand your sister’s current needs and can prepare her as her care needs change over time?

CareScout has created the first network of LTC providers focused on person-centered care – the CareScout Quality Network (“the Network”). These organizations will be verified for meeting CareScout’s high-quality standards and have committed to honoring the preferences of their care recipients and treating them as autonomous individuals. The verified LTC providers will deliver care that recognizes and appreciates diversity, care that addresses current needs and prepares individuals for changing needs, care that celebrates the range of life experiences that care recipients bring to the table. Why do this? With over half of all adults turning 65 today eventually needing LTC to help with a disability, there’s never been a more important time to promote person- centered care.1 Although some care seekers have the time and resources to research different LTC options, many care seekers are forced to make quick decisions about LTC support after a hospitalization or acute medical event. These decisions are often based on cost and geographic considerations – and information on the quality of services and the experience of the LTC providers’ care recipients is too hard to find.

A key component of CareScout’s on-going credentialing of providers is assessing person-centered care practices. This includes surveys of both care recipients and care providers – to hear directly from those receiving care and the professional caregivers providing the care – on how well person-centered care is practiced and if it’s working. The surveys will support an initial assessment of performance on person-centeredness, leading to engagement and education for underperforming LTC providers. CareScout aspires to support LTC providers in the Network, delivering person-centered care, and ultimately helping to elevate the level of care provided across the industry.

To support this initiative, CareScout engaged ATI Advisory, a research and advisory services firm, to convene an advisory panel of industry experts and synthesize the panel’s input on how to best measure the practice of person- centered care. The panelists include researchers from leading academic institutions, LTC association leaders, and caregiver advocates.

CareScout Person-Centered Care Advisory Panel Members

Katherine Abbott, PhD

Professor of Gerontology and Executive Director, Scripps Gerontology Center at Miami University

Andrea Cohen, MSW

Founder of HouseWorks LLC, and Board Chair of the Caregiver Action Network

Terry Fulmer, PhD, RN, FAAN

President, John A. Hartford Foundation

Laura Mosqueda, MD, FAAFP, AGSF

Professor of Family Medicine and Geriatrics, Keck School of Medicine, University of Southern California (USC)

Susan Ryan, MA

CEO of Center for Innovation

Regina Smith, MSW

Founder of Compassion Connection

Robyn Stone, DrPH

Senior Vice President, Research and Co-Director, LeadingAge LTSS Center

Anne Tumlinson, MM

Founder and CEO, ATI Advisory, and Founder and Board Chair, Daughterhood

The panelists convened for virtual sessions across August and September 2023. This report highlights the key recommendations from the advisory panel on how to measure person-centered care.

Here's a quick guide to the terms we use in this report:

Care recipients: Individuals receiving long-term care services

Care seekers: Individuals looking for long-term care services, including care recipients and anyone helping them in the search for care

Long-term care: Assisted living, nursing facilities, adult day care, and home care services

Providers: Long-term care organizations that provide services to care recipients

Professional caregivers: Individuals employed by providers to deliver long-term care services

Recommendations for Measuring Person-Centered Care in Long-Term Care Settings

The panelists’ recommendations focused on making the care recipient survey easier to understand and ensuring that it addresses aspects of person-centered care that are often overlooked in surveys. For the care provider survey, panel members focused on ensuring that CareScout’s survey generates honest, unfiltered responses from professional caregivers regarding their organization’s strengths and shortcomings in delivering person-centered care. This section highlights the panelists’ recommendations for both the care recipient and care provider surveys.

Recommendation #1: Avoid industry jargon in favor of simple language.

The person receiving services doesn't typically know whether there is a 'care team.' They know the individuals like the home care aide or a nurse who are serving them.

People seeking care won’t understand industry jargon. Use simple and accessible language to reach them. Even the term “person-centered care” won’t be familiar, so when CareScout is asking care recipients about the topic, you won’t see that term used — you’ll see it illustrated. Simple language should reduce confusion, put care recipients at ease, and make them feel more involved in the process. Doing this in a survey should result in more accurate responses and better input from the care recipients taking the survey.

Early versions of the survey used the phrase “care team,” which is commonly used in discussions of person-centered care. But panelists said that it wouldn’t resonate with care recipients who think of the nurse or the home health aide as their “care team.” In response, CareScout’s survey will ask specifically about staff from the LTC provider.

Recommendation #2: Ask the professional caregivers about their peers and colleagues to elicit more honest feedback and a more complete picture of provider practices.

When the survey was first drafted, it asked professional caregivers to rate themselves on how well they delivered person-centered care. It’s hard for people to fairly evaluate themselves, and some respondents might worry that it’s a performance review. Panelists told us that individuals tend to rate themselves better when asked about their own abilities.

The survey now asks the professional caregivers to rate their “peers and co-workers.” This subtle shift should ease the worries of these caregivers in responding and should broaden the scope of their responses – giving those reviewing the CareScout Quality Network insight into how an entire organization – not just one professional caregiver – practices person-centered care.

Recommendation #3: Support care recipients living with dementia and other conditions that impair their ability to respond.

Person-centered care is all about the gestalt of life. Providers need to know more than the care recipients preferences. They also need to understand their background and their upbringing. Trying to figure this out with people living with dementia is very challenging.

Nearly half of assisted living residents and almost six in ten nursing home residents have been diagnosed with Alzheimer’s disease or dementia,2 so accurate surveys of the LTC population will have to account for these conditions. The survey will include a process for interviewing representatives of care recipients (family members and other caregivers) alongside the care recipients and includes only ten simple questions to make responding as easy as possible.

Recommendation #4: Evaluate the quality (not just the quantity) of interactions between care providers and care recipients.

There's a big concern when care providers are busy. Care recipients pick up on when their nurses or aides are feeling rushed. It's important for staff to have the time and space to have a conversation and share with their patients and residents.

Person-centered care cannot happen if care providers don’t know care recipients. These relationships develop through meaningful interactions – not check-the-box visits. And the result of building these relationships is that a professional caregiver knows that the care seeker is not a morning person and schedules medication for lunch rather than breakfast. Or they know not to schedule any appointments on Monday afternoon because a grandchild comes to visit every week. To affirm this need, care recipients will be asked in the survey whether their providers “know me and my values.”

Getting to know people on this level – their preferences and goals, but also their histories, cultures, and support systems – requires time. The survey also includes a question about whether care recipients feel “rushed” in their interactions with care providers.

Recommendation #5: Assess whether care recipients get to choose which members of their support network are involved in their care.

Care recipients have strong feelings about which family members they want involved in their care, and care providers need to honor those preferences.

Person-centered care needs to be driven by the care recipient’s preference on all aspects of care, including who is (and is not) involved in their care decisions. This is not easy. But in recognition of complicated family dynamics and the hugely personal decisions related to care and support teams, care recipients must drive decisions on which family members, friends, and others they want included (and excluded) in decision making related to their care.

Care recipients will be asked if their professional caregiver solicited and respected their preferences for which family members to involve. The survey also provides an example of heeding a care recipient’s wishes: “the staff will first communicate with me and my daughter, and they will then work with other members of my family if I ask them to.” This question drives home the need to ask this question to care recipients, ideally early in care delivery because these dynamics tend to only get more complicated as conditions decline.

Recommendation #6: Evaluate the care providers' ability to prepare care recipients for transitions in care.

Thinking about what your needs are enow and what your future needs will be in terms of change of conditions, can my needs continue to be met? Am I still safe, am I still heard, is this care plan being reassessed continuously?

Professional caregivers need to be both delivering person-centered care now and preparing care recipients for future transitions. That’s because individuals receiving LTC often receive care across settings – from doctor’s offices to outpatient clinics, and skilled nursing facilities to the home. Providers can help reduce fear and disruptions in care through these transitions by talking about them with care recipients. Awareness of what’s coming, and how to advocate for their needs and preferences across settings, can help care recipients maintain person-centered care. To promote this practice, CareScout will ask care recipients if “the staff helps me to understand my options, especially when I need to receive care in different locations, and they help prepare me for transitions.”

Recommendation #7: Survey professional caregivers to get an "honest take" on a long-term care provider's ability to deliver person-centered care.

Thinking about [administering] the survey, a person's role is important because [administrative leadership] don't build the same relationships as a CNA does.

The panelists commended CareScout for focusing the care provider surveys on professional caregivers. These staff in LTC settings, like nurses, nurse aides, and home care aides, have direct insight to care that can’t be matched by administrators. They aren’t looking to market services and capabilities – they’re looking to deliver high-quality care and support. These staff see care recipients every day, put into practice administrative priorities, and know how well person-centered care is being delivered. So it only makes sense to survey these staff. Because of this focus on professional caregivers, care seekers looking at CareScout’s network of providers can rest assured that the ratings of person-centeredness for providers are coming from the staff putting person-centered care into practice on a daily basis.

Recommendation #8: Measure the cultural competency of long-term care providers.

You have tremendous variation for folks living in these settings. Cultural variation, ethnic, racial, is critical to the success of person-centeredness and how they relate to a specific client and population of residents.

The increasing diversity of the U.S. means that LTC providers will see more and more care seekers from backgrounds different than their own. Providers need to be ready to break down the barriers that this might introduce. Think of a Christian staff person in an LTC setting working with a Jewish care recipient. The staff person may not know the holidays important to the care recipient. They may not know how to celebrate them. But that doesn’t need to stop them from learning about the holidays and helping the care recipient to celebrate them. This also includes the need to make sure that language translation is available so that care recipients who don’t speak English (or speak it as a second language) can still be heard and understood. Person- centered care means learning about the whole person receiving care, and staff will need tools and support to do that.

To make sure that providers are embracing the diversity of care recipients, CareScout will ask them if their “peers and co-workers respect the different cultures of our clients and engage with them in ways that are appropriate to their background.” And they’ll ask care recipients if their professional caregivers use a language they can understand. Breaking down barriers of religion, race, ethnicity, sexual orientation and more, and building understanding, will be critical skills that LTC providers need to develop in their staff.

Recommendation #9: Determine if professional caregivers are getting the resources, education, and tools to deliver person-centered care.

Does that care provider feel supported from an educational perspective? As care needs change, how is their employer helping them? What educational resources and training do they access to?

Understanding and delivering person-centered care takes time, skills, and resources. This includes technical supports – like computer systems to access care plans – and people skills – like empathy and vulnerability in staff. LTC providers will need to make investments to support staff across these areas.

Professional caregivers will be asked if they have what they need to deliver person-centered care. A “passing grade” for providers will require continued investment in training programs, online learning, and more to make sure professional caregivers are continually ready and able to deliver person-centered care.

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Next Steps: Building an Expanded Person-Centered Care Program

CareScout is in the early stages of a comprehensive, multi-year effort to build an online marketplace for care seekers and their families that brings together LTC options, educational resources, and human support into a single, comprehensive website open to the public. For care seekers, there will be a directory of LTC providers that meet our high-quality standards and have committed to offering person-centered care. These providers will be able to show a badge on their on-line profile that notes they are a high-quality provider and to shine a light on their person-centered care practices.

As CareScout embarks on this effort, they’ll be working with providers to survey their clients and staff to obtain baseline person-centered care climate scores. Providers who don’t meet the threshold scores for quality person-centered care will receive specific targeted education to complete via the CareScout Quality Care Academy. They will have the chance to get surveyed again to show they have improved their person-centered care climate.

Beyond the marketplace that CareScout is building, CareScout will also look to lead the field of LTC providers in advancing person-centered care practices by developing and providing educational materials and thought leadership. This includes ongoing publication of materials, sharing learnings from CareScout’s work in network-building and verification of providers. This twofold approach of network building and ongoing education is central to CareScout’s ongoing commitment to reframing the experience of aging and what it means for providers to deliver quality care.

Sources

1 Johnson, R. and J. Dey. “Long-Term Services and Supports for Older Americans: Risks and Financing, 2022.” Department of Health and Human Services (HHS) Office of the Assistant Secretary for Planning and Evaluation (ASPE) Research Brief. August 2022.

2 ATI Advisory Analysis of 2018-2020 Medicare Current Beneficiary Survey.

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