Measuring Person-Centered Care

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

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.

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.

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.

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.

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.

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.”

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.

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.

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.