Multilevel Conceptualization and Measurement of Person-Centeredness

Abstract

Despite widespread usage in aging and health services, the concept of person-centeredness (PC) does not have a single, universal definition. This definitional challenge may be due, in part, to desired parsimony that oversimplifies the concept’s intrinsic complexity. To better understand the inherent breadth and depth of PC, 116 experts in health- and aging-related policy and practice participated in meetings to discuss PC as a concept, which led to a multilevel conceptualization of the term at the macro, meso, and micro levels. The focus, implementation, and challenges of PC were identified at these interrelated levels, creating a nuanced, contextual model. In addition, the model’s application to current measurement of PC is detailed, and recommendations are made for additional review and development to best measure PC at all levels. This innovative multilevel approach makes explicit the innately contextual nature of PC as a value-based concept, with application for policy, practice, and research.

Background

Nearly 30 years after the concept of person-centered care was introduced, there is still no single, agreed-upon definition of person-centeredness (PC) or person-centered care (Nolte, 2020). A 2016 systematic review of the topic found 15 definitions that included 17 principles within six domains (e.g., dignity, choice, and self-determination) (Kogan, 2016). In a recent systematic scoping review of the definitions being used in scholarly literature related to dementia, most papers referencing person-centered or patient-centered interventions did not define the term, and when they did, the definitions vary widely (Efird-Green, in review). The concept of PC is applied to numerous populations and services, including virtually all aspects of healthcare, complicating the definition further and creating even more terms for the concept (Fazio, 2018).

The multiple components of PC sometimes overlap in disparate definitions, but are not universal (Kogan, 2016), particularly in social and cultural contexts that are not Western and individualistic (Smith, 2022). Although a single definition may not be a reasonable goal given the values-based nature of the concept, an organizational structure that embraces the differences inherent in current definitions would allow a common understanding of PC and be beneficial to healthcare practitioners, policymakers, and consumers. Currently, much of the existing research conceptualizes PC as a single, unified construct and concentrates on person-centered care practices, thereby overlooking the personal, organizational, and societal contexts that influences how PC is perceived and experienced. A common, nuanced understanding of the concept could improve operationalization, implementation, and measurement/assessment of PC across a variety of settings and populations, thus making the concept less esoteric and more actionable (Kogan, 2016).

One such organizational structure is the multilevel sociological analysis framework, which has been utilized and adapted in a variety of social science fields including public health, social work, sociology, and political science and proposes three levels to understand the application and impact of social problems and interventions: the micro, meso, and macro levels (Wiley, 1988; Serpa, 2019; Pyyhtinen, 2017). These levels are not isolated from one another; rather, the multilevel elements of a concept, policy, or intervention are interrelated, and when applied to a concept or phenomenon, a multilevel perspective allows for a more complex, nuanced definition and implementation that holds space for multiple understandings and experiences (Pyyhtinen, 2017).

In healthcare research, this framework has been applied in a variety of contexts, including studies of value (Beirao, 2017) and quality (Wiig, 2014) in health service systems; understanding health policy implementation (Caldwell, 2012) and the roles of institutions in healthcare inequality (Gkiouleka, 2018); as well as in interpreting the results of patient-reported outcome measures (Sawatzky, 2021) and the implications of big data in healthcare (Kuziemsky, 2014). However, this framework has never explicitly been applied to the concept of PC; indeed, the struggle to universally define PC is perhaps due to a desire to simplify this complex concept into a single sentence. For example, defining PC as only relevant in certain populations (e.g., dementia- or aging-related care) deemphasizes the importance of PC across all health and service settings; similarly, defining it through values alone (e.g., dignity or empowerment) limits actionable implementation and does not recognize value differences across settings or cultures. A multilevel conceptualization of PC could incorporate the “richness and messiness of the world” (Pyyhtinen, 2017, 302), as well as the value- and context-based nature of the concept, while still providing a structure through which person-centered practice, policy, and research can be understood and evaluated. To that end, this project was conducted to create a more nuanced conceptualization of PC based on the multilevel sociological analysis framework.

Methods

As part of a larger project to understand PC and its application to systems, the workforce, and technology, meetings were held with 116 diverse experts in health and aging. Of the 116 experts, 37 participated in virtual meetings of four to eight people and included researchers, practitioners, policymakers, advocates, and direct care providers in long-term and health care. An additional virtual meeting included 10 members of the Alzheimer’s Association Early-Stage Advisory group. Finally, three in-person meetings were held with 12 care partners in an assisted living community; 16 attendees at the Center for Innovation Conference; and 41 members of the Alzheimer’s Association Dementia Care Provider Roundtable.

All meetings included prompts developed a priori by the project team that asked about participants’ definitions of PC, and three of the meetings specifically focused on the concept of PC. For example, participants were asked:

• What comes to mind when you think of being person-centered, not just in terms of care, but in terms of society in general?

• What are the key elements of PC? Where are the fuzzy edges?

• How should issues of race, class, inequality and privilege be taken into consideration as part of attempts to be person-centered?

The meetings were 60 to 90 minutes in duration and were recorded and transcribed. Feedback from these discussions was then organized into a multilevel conceptualization of PC, using the traditional sociological levels of analysis (micro, meso, and macro), that holds space for nuance while still allowing for a common understanding that can be used at all levels of policy, practice, and research. Given the project’s goals, participant feedback was organized in an inductive manner, with constructs identified by the project teams, and the sociological framework was applied post-hoc to these constructs by the authorial team. In addition, a literature search was conducted after feedback was compiled to identify illustrative measures of PC, in part to examine whether the multilevel conceptualization is present in the PC-related measurement, as well as to understand if and how the focus, recommendations for implementation, and challenges identified by participants may already be being measured across systems, cultures, organizations, communities, individuals, and families. These measures were categorized depending on their audience/users and item content (e.g., organizational self-assessment vs. individuals’ assessment of care quality). System-level assessments were defined as macro; organizational as meso; and individual as micro, in keeping with the overall sociological framework.

Results

Participants talked about PC in a way that fit within a multilevel model and addressed three topics: its focus (i.e., what does PC mean at this level), how it should be implemented (i.e., how do we “get there” in regards to PC at this level), and challenges to that implementation (i.e., the problems that prevent PC in systems, cultures, organizations, communities, individuals and families) (see Figure 1).

• At the macro level—meaning systems and cultures--there is a focus on core values, the influence of privilege and oppression, and how PC is implemented – or not – in systems and cultures.

• On the meso level—organizations and communities-- there is a focus on organizational responsibility, the applicability of PC to various communities, and the importance of relationships.

• On the micro level – individuals and families - PC is focused on care, including individualization and personalization, the importance of care partners/family, and the challenges of PC in context.

Each of these levels and the related focus, implementation, and challenges are detailed in the material that follows.

Figure 1:

Multilevel Model of Person-Centeredness, including the Focus, Implementation, and Challenges of Each Interrelated Level

The Macro Level: Cultures and Systems

The macro level as defined in sociological analysis is composed of societies, cultures, and systems (Serpa, 2019). At this level, respondents discussed PC based on core values that are familiar to all people and cultural groups (Table 1); for example, “informed choices, respect, dignity, empowerment, and cultural responsiveness,” which are “common denominators” across “cultures or care/non-care situations.” To make PC accessible to all persons who interact with aging and health services, it must be implemented in a way that is ubiquitous, top-down, and embedded in systems through policy, regulation, and funding mechanisms. More specifically, PC would need to be foundational to systems that fund, deliver, and regulate services across multiple setting and service types (e.g., acute and long-term care; community support systems) and in all sectors (e.g., for-profit, nonprofit, governmental) and initiated and maintained from the top levels of leadership in each of these sectors and settings. Embedding PC in systems not only requires an expansive perspective – a “system corrective” - but also an understanding of the variety of systems that impact large-scale implementation of PC practices, including organizational management, funding, and regulations. Currently, those structures do not necessarily support PC, despite their importance in its implementation; one participant stated that “…the management structures, the funding structures, the regulatory structures don’t support it [PC].” Thus, implementing PC is not only a matter of resources; it is systemic: “all the resources that people say we need, we do – we need more staff, we need more resources. However, my biggest fear is that we’ll get more resources, and it won’t make any difference, and that would be tragic…[rather]we have to start from the top to make things person-centered.” In addition, implementation success must be measured iteratively through “constantly evaluat[ing] to see if you are getting closer to being a supportive, person-centered person, organization, system, and society” and in a way that considers the impact of cultural differences and societal oppression of diverse identities via “culturally responsive evaluation.”

Table 1:

Focus, Implementation, and Challenges of the Macro Level of PC: Systems and Cultures

Illustrative Quotes
Focus	Core values	The key elements [of PC] are informed choices, respect, dignity, empowerment, and cultural-responsiveness, as well as personal growth, identity, and integrity. Is [PC] universal?… We’re talking about dignity, respect, personal growth, identity – it’s a lot easier to think about that, I think, whether you’re thinking about crossing cultures or care/non-care situations. There are certainly some common denominators there.
Implementation	Ubiquitous, top-down, and embedded in systems, which would require major changes to current structures	It’s a huge system corrective that’s needed. I mean, all the resources that people say we need, we do – we need more staff, we need more resources. However, my biggest fear is that we’ll get more resources, and it won’t make any difference, and that would be tragic… [rather,]we have to start from the top to make things person-centered. We come up with terms like person-centered… but the management structures, the funding structures, the regulatory structures don’t support it. So, we take this obligation, and we put it on the shoulders of the people least well-funded, least well-equipped, least well-resourced to actually make it happen. How do we know when we get it right? I would suggest culturally responsive evaluation and doing that not just [by] asking questions on a survey, but looking at documentation in systems and what has actually been provided to individuals.
Challenges	Societal norms and systematic oppression	For-profit [healthcare] gives you a different way of thinking. I think it’s almost impossible in the current structure that we have, because all of the incentives and the decision-making is going in a different direction [than PC]. As it relates to groups or individuals that have been systematically oppressed, there’s a different level of expectation… for example, in a survey of state recipients of long-term services and supports, Black respondents felt better about the supports that they received. Now, my assumption is that they’re probably not getting better supports; they probably have a lower standard in terms of the societal oppression that they have experienced. A lot of the communities that we work with are folks who are often labeled “hard-to-reach.” They’re not hard to reach, they’re easily ignored. The conversation of disparities, from the aspect of diverse populations, has to be separated from the conversation of PC… in an interview process I conducted [with state long-term services and supports agencies], I heard a lot of people say that if I provide person-centered supports and services, then I am obviously providing equitable supports and services. And that idea is a dangerous idea, because some individuals getting what they desire is a very personal expectation; it’s not a systemic expectation… You have to go several steps beyond that to address equity.

In remarking on the challenges of PC at the macro level, respondents noted that the reality of a values-based shift in industry- and system-wide practices is complicated. In fact, the very nature of the for-profit American healthcare system, which relies on the creation of profit and complex funding mechanisms to survive, is antithetical to the idea of PC; it currently motivates organizational and policy leaders to prioritize efficiency and one-size-fits-all solutions to increase profitability, as one participant stated: “for-profit [healthcare] gives you a different way of thinking. I think it’s almost impossible in the current structure that we have, because all of the incentives and the decision-making is going in a different direction [than PC].” Another macro-level consideration for the concept of PC is that it must recognize and address issues of privilege and oppression at a societal level. For example, satisfaction data, which are often how PC is measured, can be skewed by the impact of oppression for groups that have systematically been denied access to PC programs and practices: “in a survey of state recipients of long-term services and supports, Black respondents felt better about the supports that they received. Now, my assumption is that they are probably not getting better supports; they probably have a lower standard in terms of the societal oppression that they have experienced.”

In relation to challenges, PC must be implemented inclusively, particularly for “hard to reach” and underserved groups such as those who do not speak English as a first language: “[Communities are] not hard to reach, they are easily ignored… We don’t want to pay for language access, or we don’t want to meet them where they’re at, in rural areas or on reservations, we don’t want to go there.” PC requires more than just good intentions and a focus on the individual; it needs to be designed equitably and co-created with diverse populations “with any number of intersections around their identities.” However, the implementation of PC or its core values should not be mistaken for societal equity; participants identified that as a “dangerous” overreach of the core concept. For example, “we might say that an individual navigated a service well, but then we might miss big-picture discrimination, or big-picture obstacles and barriers for folks around how certain people are accessing services.” Because of the historical oppression of individuals with diverse identities and the longevity of inequity in American society, addressing disparities requires more work than the implementation of PC in various systems; “some individuals getting what they desire is a very personal expectation; it is not a systemic expectation… You have to go several steps beyond that to address equity.”

The Meso Level: Organizations and Communities

The meso level of sociological analysis focuses on organizations and communities, rather than entire cultures or systems (Serpa, 2019). At this level, participants defined PC via the facilitation of “deep knowing relationships;” that is, organizations focusing on understanding the individuals they serve and having organizational policies and practices that promote access to proper resources and supports in accordance with each person’s “individual worth and value” (Table 2). In addition, deep relationships require viewing each individual through the lens of the community, a larger “whole” of which they are a part: “In the care dyad… we set ourselves up for these essentially impoverished relationships that lack depth of understanding… [instead] you can conceive of a person as part of a larger structure, a whole.”

Table 2:

Focus, Implementation, and Challenges of the Meso Level of PC: Organizations and Communities

Illustrative Quotes
Focus	Deep relationships between organizations and individuals; viewing an individual as part of a larger community	[PC] is about deep knowing relationships, and really embracing personhood, and the value of the person as someone who is a unique individual… it is about the human right to engage in a level of risk-taking and autonomy… Whatever [organizational setting] it is, that concept really needs to embrace that individual worth and value. In the care dyad… we set ourselves up for these essentially impoverished relationships that lack depth of understanding… [instead] you can conceive of a person as part of a larger structure, a whole..
Implementation	Organizational processes and leadership	It needs support from the very top. They have to understand [PC] and the practices that maintain it…]. How person-centered is your employee handbook?… If I’m getting the same gobbledygook that everyone else has, I’m thinking that you’re not very serious about [PC], are you? When we were teaching the Eden Alternative [a model of nursing home care], we had this saying: what the management does unto the staff, so the staff does unto the elders.
Challenges	PC defined differently across communities	In socio-centric societies and cultures, [PC] probably would be a term that… may be tilted in terms of what the general values and beliefs and traditions of that group may be. And inserting that term and its white, middle-class, academic understanding may actually be confusing, at least, or at worst, offensive. I’ve been working with a group from across the world, many in developing countries, and many of them don’t like the whole notion of “person-centered” … there’s such a focus on family and community that to talk about a person, as if they were not within this constellation of a relationship network, is nonsensical to them. Language matters… even my parents, who are nurses by training, English is my dad’s second to third language. Is this [PC] an idea that’s going to resonate with normal people? How do we even get folks across [diverse] communities to understand that they could ask for this, as a way of being in the world or receiving or participating in services?

To implement PC on the meso level, respondents stated that organizations must consciously embed it into their internal processes and practices (e.g., staff culture) rather than solely client-focused functions; for example, “How person-centered is your employee handbook?… If I’m getting the same gobbledygook that everyone else has, I’m thinking that you’re not very serious about [PC], are you?” Additionally, organizational leaders must understand the concept and support its implementation: It needs support from the very top. They have to understand [PC] and the practices that maintain it.” Changing internal processes requires an organizational culture shift and dedicated leadership – “What are you doing to create cultures of belonging? And where is leadership in really modeling that?” – not just by a single champion, but by the entire management structure of the organization. The extent to which PC is embedded into an organization impacts its core functions; for example, how staff in a long-term care setting treat their residents (“what the management does unto the staff, so the staff does unto the elders”), or how ethical dilemmas are solved (“those are tough decisions, and you can’t just knee-jerk… you need a process to solve problems that honor values and respect that person’s right to make a choice”).

Participants identified a meso level challenge of PC: that communities may have disparate understandings of the concept. The term, or some of its core values, may not universally resonate in non-individualistic communities, both within the US and globally. For example, one participant stated that “I’ve been working with a group from across the world, many in developing countries, and many of them don’t like the whole notion of ‘person-centered’… there’s such a focus on family and community that to talk about a person, as if they were not within this constellation of a relationship network, is nonsensical to them,” and another said that “inserting that term and its white, middle-class, academic understanding [into socio-centric communities] may actually be confusing, at least, or at worst, offensive.” These value-based differences must be addressed through cultural adaptation and translation of PC. An inability to effectively do so could affect access to person-centered services and care: Language matters… is this [PC] an idea that’s going to resonate with normal people? How do we even get folks across [diverse] communities to understand that they could ask for, as a way of being in the world or receiving or participating in services?

The Micro Level: Individuals and Families

At the micro level, which encompasses individuals and families, respondents discussed PC as the individualization of care to improve quality of life--essentially, person-centered care. It includes a focus on preferences and personhood, as well as shared decision-making: In person-centered care, you should put preferences front and center… [and have] language access, literacy access, physical aids, mobility aids, so that people can be as fully engaged in their healthcare and decision-making as they want to be,” all in the pursuit of better care (Table 3). When speaking about PC, participants offered anecdotes about the small efforts that made a big difference when an individual’s preferences were prioritized. One such anecdote was: “My take on defining PC is to take it down to the ‘small ball.’ Take my mother, she liked bacon and eggs for breakfast, but if she got fat on her bacon, she would talk about it all day. To me, that’s person-centered because that bacon set up the rest of her day. If the tech who served the breakfast just crisped up the breakfast like my mother liked, the tech would turn around my mother’s day.”

Table 3:

Focus, Implementation, and Challenges of the Micro Level of PC: Individuals and Families

Illustrative Quotes
Focus	Care; personalization and individualization	In person-centered care, you should put preferences front and center. Sometimes there’s the jargon “meet them where they are,” in terms of having shared decision-making… Having language access, literacy access, physical aids, mobility aids, so that people can be as fully engaged in their healthcare and decision-making as they want to be. My take on defining person-centeredness is to take it down to the “small ball.” Take my mother, she liked bacon and eggs for breakfast, but if she got fat on her bacon, she would talk about it all day. To me, that’s person-centered because that bacon set up the rest of her day. If the tech who served the breakfast just crisped up the breakfast like my mother liked, the tech would turn around my mother’s day. My stepfather required 24-hour caregiver support… and the caregiver decided that his ankles were swollen, and she was going to take away the saltshaker. And this is a man who lived for salt, he would take off the top of the saltshaker and dip his celery in and eat the celery… And as his healthcare power of attorney, I said it’s okay for him to have the salt. She said that I’m not allowed to do that, my boss said that I have to make sure he doesn’t have it.
Implementation	Inclusion of care partners and determined by person and care partners	[We must] put family caregivers – and by that I mean whoever is important to the person, friend, relative, whoever – in the center of care, to the extent that it makes sense in that person’s situation. A lot of organizations have not embraced “person and family-centered care,” and they think it’s annoying… they are not seeing family members as the care partners that they should… [for example,] the stereotype of the physician doing their rounds at 6 or 7 in the morning before the families get there. It happens less often, but it still happens.
Challenges	Extent of PC is limited by the individual, family, and setting contexts	People think about “cares” as tasks, things that you do. Allowing [a care partner] to be person-centered, to engage in something, whether it’s stating a preference or evaluating the care that they get, they are blocked from doing that from the efficiencies that we’ve built into “cares.” Someone living with dementia, it could be that they’re not cognitively able to do whatever they would want to do, given their cognitive abilities… It’s really understanding what that looks like and where’s the locus of control… typically in a congregate setting, that control is typically outside the person. The organization has parameters and rules that need to be followed, and oftentimes… the pendulum swings towards safety. PC means you take the individual’s unique situation and preferences into account. It doesn’t mean everybody gets to do whatever they want… It takes resources to spend the time it takes to engage with an individual… to get to know them, to listen to them, to help them understand their options and constraints and opportunities and to make decisions. That takes time, and time means resources… so it’s a goal.

Participants also insisted that PC should consider the role of families, which may be family, friends, or others involved in a person’s care. [We must] put family caregivers – and by that I mean whoever is important to the person, friend, relative, whoever – in the center of care, to the extent that it makes sense in that person’s situation. Some participants identified person- and family-centered care as an analogous term for person-centered care. Unfortunately, families may not be regarded as key partners by all healthcare providers, despite their importance to the shared decision-making and care processes: “A lot of [care] organizations have not embraced “person and family-centered care,” and they think it’s annoying… they are not seeing family members as the care partners that they should… [for example,] the stereotype of the physician doing their rounds at 6 or 7 in the morning before the families get there.”

On the other hand, PC can and sometimes must be limited by the care context. For example, in long-term care settings, efficient, task-oriented “cares” may limit PC – “People think about ‘cares’ as tasks, things that you do… Allowing someone to be person-centered, to engage in something, whether it’s stating a preference or evaluating the care that they get, they are blocked from doing that from the efficiencies that we’ve built into ‘cares.’” In addition, there are limitations to PC for individuals who live with cognitive change or in congregate settings, which may prioritize safety and liability over personal choice. One participant stated that “Someone living with dementia, it could be that they’re not cognitively able to do whatever they would want to do, given their cognitive abilities… where’s the locus of control… in a congregate setting, that control is typically outside the person. The organization has parameters and rules that need to be followed, and oftentimes… the pendulum swings towards safety. Finally, resources are often a challenge at the micro level. Time, money, and capacity all affect how an individual’s preferences can be expressed and carried out by caregivers. Thus, PC may be a goal, rather than a guarantee: It takes resources to spend the time it takes to engage with an individual… to get to know them, to listen to them, to help them understand their options and constraints and opportunities and to make decisions. That takes time, and time means resources… so it’s a goal.

Multilevel Measurement of PC

Although this explicit proposed multilevel model of PC is new, assessment tools focused on systemic, organizational, and individual PC were found that already capture macro, meso, and micro levels of PC implementation; the following examples of measures and a selection of their items are included in Table 4. The existence of measures on each of these levels supports the cultivation of this multilevel model, and their differences in content, format, and audience emphasize the importance of a common understanding of the concept to accurately assess it in practice.

Table 4:

Examples of Multilevel Measurement in PC

Level	Illustrative Measure	Example Items
Micro	The Person-Directed Care Measure	Residents participate in recreational activities that match their interests Residents help develop and update care plans, service plans/task lists Residents make their own choices even if it puts them at risk
	Person-Centered Practices in Assisted Living	Caregivers notice changes in my mood, such as if I am feeling anxious or depressed. I am unsure of my rights and who to call if my rights aren’t honored. Caregivers seem happy with their jobs.
	Measurement Instrument for Dignity AMsterdam-for Long-Term Care Facilities (MIDAM-LTC)	I have the feeling that I can’t quite oversee what is happening to me I no longer feel like the person I was before I have little privacy
	Person-Centered Primary Care Measure	In caring for me, my doctor considers all of the factors that affect my health. My practice coordinates the care I get from multiple places. The care I get in this practice is informed by knowledge of my community.
	Person-Centered Climate Questionnaire--Patient	I experience this unit as: A place where people talk about ordinary things, not just illness. A place where the staff make a little extra effort on my behalf. A place where I have choices, for example, what to wear.
Meso	Model Enrichment Resource and Integrity Tool (MERIT)	Family Members and guests routinely dine at the table with elders. Elders remain in the Green House until end of life (regardless of acuity changes, with the exception of hospitalizations). Elders can go to bed whenever they want.
Macro	AARP State Long-Term Services and Supports Scorecard	States are assessed on their policies and programs, for example: Access to housing assistance for people with disabilities Mandatory paid sick days for LTSS caregivers Assisted living supply
	NCAPPS Person-Centered Practices Self-Assessment for Government Agencies that Oversee Human Services	Our leaders recognize that person-centered practices are important in people’s lives and assign the appropriate authority to program directors to meet basic standards. Our agency’s guiding principles or values statements describe the importance of person-centered activities, but there is no specific strategy to spread person-centered practices across the full system. Our agency has a communication plan that aligns all communications of policy and practice with person-centered principles and values.

At the micro level, there are a variety of tools to measure aspects of individual person-centered care, including the Person-Directed Care Measure (White, 2008); the Person-Centered Practices in Assisted Living (Zimmerman, 2015); the Measurement Instrument for Dignity AMsterdam-for Long-Term Care Facilities (Oosterveld-Vlug, 2014); the Person-Centered Primary Care Measure (Etz, 2019); the Person-Centered Climate Questionnaire-Patient (Edvardsson, 2009), and many others. These and other instruments ask individuals, including service recipients, family members, and organizational staff, their opinions of their care and environment with the purpose of evaluating and improving that care and environment. In this way, these measures are micro, in that they are focused on the experience of an individual but aim to impact the implementation of PC at the meso (organizational) level.

A person-centered organizational measure is the Green House Project’s Model Enrichment Resource and Integrity Tool (MERIT), developed with the Calvin University Center for Social Research (Green House Project, 2023). This measure is completed by organizational leaders in order to evaluate organizational practices and policies for PC. Finally, at the macro level the AARP State Long-Term Services and Supports Scorecard assesses systems, has an equity focus, and is based on a person- and family-centered approach (AARP, 2023); another example is the National Center on Advancing Person-Centered Practices and Systems (NCAPPS) Person-Centered Practices Self-Assessment for Government Agencies that Oversee Human Services (NCAPPS, 2022). Both of these measures are meant to be completed by the leadership of long-term services and supports departments at the local, state, or federal level to evaluate these systems’ implementation of PC.

It is apparent that there are limitations to measurement at the meso and macro levels, in that there are fewer available instruments available. Siloing PC into the micro level is common, and results from a focus on person-centered care rather than on person-centered organizations or systems (Leidner, 2021). In addition, there is a lack of commonality in assessed elements among the measures, both within and among framework levels. In a critical comparative review, Edvardsson (2010) found that most measures do not explicitly define their conceptual underpinnings, which makes comparing measures difficult. An updated systematic review and crosswalk of such measures to identify the most effective way to evaluate PC from a multilevel perspective, including via a multiscale assessment, could then allow evaluators to measure PC at each framework level simultaneously. One possible assessment strategy could be person-centered attainment scaling, which considers multilevel challenges to PC that result in inherent tensions (e.g., safety versus freedom, superficial versus deep knowing) and its effect on the wellbeing of individuals in a variety of settings (Zimmerman, in review).

Discussion

PC is widely used but has no universal definition, which impedes research, the development of policies, and the implementation of practices. Based on discussion groups with 116 experts in aging and healthcare, a multilevel conceptualization of PC was evident, modeled using the three levels of sociological analysis: macro (systems and cultures); meso (organizations and communities); and micro (individuals and families). This conceptualization includes the term’s core values and foci – for example, personhood, dignity, deep knowing, and individualization based on preferences – as well as how those foci are implemented and their boundaries and challenges. This project, unique in its reach and focus, resulted in an innovative and nuanced model that could be applied to a variety of settings and fields at every sociological level. Of course, PC has innate tensions, such as community versus individual and policy compliance vs. flexible decision-making; these and other tensions are reported in a related article, “The Need to Reconstruct ‘Person-Centeredness’ Based on Inherent Tensions” (Zimmerman, in review).

It is important to note that although the results of this project are organized and reported by each framework level, the model’s levels are interrelated as represented by the arrows in Figure 1, and participants often discussed multiple levels of PC within the same prompt response or meeting. For example, macro level structures, actions, and challenges (e.g., regulation and funding) affect both meso (e.g., organizational priorities) and micro (care delivery) levels of PC implementation, and vice versa. This multilevel model, while preliminary, thus incorporates important context and interactions that are often missing in current research, practice, and policy definitions of PC.

In addition, the elements of PC proposed by participants are also present in the literature, supporting the multilevel model of PC as presented. At the macro level, the foundational values of PC, including personhood, dignity, and empowerment, are generally present in all cultures and are widely acknowledged as essential to conceptualizing PC (Fazio, 2018). The impact of oppression has been named as a challenge for implementation of PC across systems and cultures (Smith, 2022). In addition, for-profit healthcare systems limit the ability to systemically implement PC at a macro level, because organizational efficiency is often highly valued (Arnold, 2020). Creating systems that are person-centered therefore requires dramatic changes to both public and healthcare industry policy; making the delivery and financing of healthcare services, as well as regulatory structures, more person-centered is particularly important to achieving this goal (Leidner, 2021; WHO, 2013). In addition, greater public accountability from healthcare organizations and systems, including public reporting of performance measures to illustrate commitment to PC values and practices, could assist with the shift towards PC at the systemic level (WHO, 2013).

At the meso level, the importance of organizational investment in PC is common in best practice reports from expert organizations. For example, the National Center on Advancing Person-Centered Practices and Systems has developed recommendations for the creation of a person-centered organizational culture, including promoting learning; accountability and partnership; and the importance of leaders who invest in power with, rather than power over (NCAPPS, 2024). In addition, the meso-level challenge, disparate definitions, is present in the literature. The cultures that first elaborated the concept of PC, namely Europe and the United States, are generally individualistic societies which comes with a particular set of values and priorities that is not universal, especially in more socio-centric or collectivistic cultures (i.e., those with a primary focus on the good of the family and community) (Arnold, 2020). Whether someone belongs to a collectivistic or individualistic culture influences provider-patient interactions, how illness is conceptualized, and how healthcare decisions are made (Armstong, 2001); for example, families that live and make health decisions intergenerationally may have disagreements in values and beliefs about health care (Johnstone, 2016). Given these differences, the need for adaptation of person-centered practices for diverse communities is clear and has been shown to improve health outcomes in advance care planning discussions (Johnstone, 2009) and hospitalizations and end-of-life care (Johnstone, 2016).

At the micro level, the role of informal care partners, such as family members, in aging and health services is well-established. Family caregivers have consistently been shown to be helpful in promoting person-centered care, including acute care and hospitalization, long-term and home care, and palliative care (Ward-Griffin, 2012; James, 2009; Thomas, 2002). Their integration into shared decision-making with healthcare providers and professional caregivers, without superseding the individual’s wishes, is crucial to the implementation of person-centered practices on an interpersonal level (Boltz, 2012). In addition, the limitations of person-centered care in context are supported by the literature. Efforts to integrate individual choices and preferences into care despite contextual challenges is an ongoing topic of academic research, as well as national and organizational policy for healthcare settings (Bangerter, 2017;Leidner, 2021). For example, the Rothschild Care Planning Process for Resident Choice to address negotiated risk is one way to approach one of the challenges of PC in care contexts (Behrens, 2018). The inherent tensions in PC – for example, community benefit versus individual benefit, or efficiency versus individualization – frequently play out at the micro level, though the tensions are present in the macro and meso contexts in which an individual or family resides (Zimmerman, in review).

While this project provides an innovative multilevel conceptualization of PC, there are some limitations. Despite the engagement of a wide swath of experts and providers, some perspectives were inevitably missed. In addition, because of the preliminary nature of this research, the resulting model, though well-established in the literature, has not previously been made explicit. Therefore, examples of its use are limited, and it requires further consideration and evaluation by researchers, policymakers, practitioners, and consumers. However, support in the literature for the aspects of PC present in each of the three levels, as well as measures specific to each level, strengthen the model.

Conclusion

This project leveraged the opinions and expertise of 116 specialists in aging policy and practice to identify a multilevel conceptualization of PC. Their insight of the macro, meso, and micro levels produced a nuanced understanding of PC practices in a variety of settings and contexts, which could aid the development of measures and assessment tools and guide conversations about PC implementation, particularly at the meso and macro levels where PC is more difficult to achieve. A variety of strategies, including the creation of multilevel measures that evaluate systems, cultures, organizations, communities, and individuals’ and families’ experiences, are needed to improve PC at all sociological levels. In addition, research is indicated to better understand the interrelationship between levels and nuances across different populations.

What This Paper Adds

• A contextual, multilevel conceptualization of person-centeredness (PC) that accounts for its macro, meso, and micro-level aspects and is supported by existing literature and measures assessing person-centeredness

Applications of Study Findings to Gerontological Practice, Policy, and/or Research

• This conceptualization of person-centeredness allows interdisciplinary collaboration and coordination across policy, practice, and research

• Further review and implementation of this model and related measurement of the concept by researchers, practitioners, and policymakers are recommended