Minority Older Adults’ Access to and Use of Programs of All-Inclusive Care for the Elderly

Abstract

Programs of All-Inclusive Care for the Elderly (PACE) are an effective approach to improve care quality and delay institutional admissions especially for Black and Hispanic older adults who have seen a disproportionate rise in nursing home use. Guided by Andersen’s Behavioral Model of Health Services Use and employing focus groups and one-on-one interviews, we qualitatively examined factors influencing access to and use of PACE by Black and Hispanic older adults. The study sample consisted of thirty-two PACE enrollees, six marketing-team members, and four family-caregivers from three PACE sites in a northeast urban city. Informed knowledge, cultural beliefs, and attitudes toward PACE were found to affect access. Community resources, available services, and care quality facilitated enrollment/participation. Barriers identified included poor dissemination of information and inadequate emphasis on staff’s sensitivity to enrollees’ cultural and disability differences. Findings will help healthcare leaders capitalize on facilitators and address barriers to enhance access and use of PACE by racial and ethnic minority older adults.

Introduction

The number of older adults who are members of racial and ethnic minority groups has increased dramatically over the last four decades and are expected to make up nearly 40% of those 65 and older by the year 2050 (Mather, 2016). This growing segment of the U.S. population lives with functional daily living limitations in greater proportions than their White counterparts (e.g., Blacks 31%, Hispanics 35%, Whites 21%) (Joint Center for Housing Studies, 2016). Aging in their homes through the use of supportive home and community-based services (HCBS) has been the preferred option for older adults requiring care for disabling conditions. Unfortunately, between the years 1999–2008, aging in homes occurred less often for racial and ethnic minorities than White older adults contributing to a disproportionate increase of Black and Hispanic older adults utilizing nursing home care (Akamigbo & Wolinsky, 2007; Feng, Fennell, Tyler, Clark, & Mor, 2011). Furthermore, there is substantial evidence demonstrating these racial and ethnic minority groups have poorer outcomes than White groups in nursing home settings which includes higher rates of pressure ulcers (Cai, Mukamel, & Temkin-Greener, 2010; Li, Yin, Cai, Temkin-Greener, & Mukamel, 2011; Rosen et al., 2006); fewer advance directives (Castle, 1997; Degenholtz, Arnold, Meisel, & Lave, 2002; Kiely, Mitchell, Marlow, Murphy, & Morris, 2001; McAuley & Travis, 2003; Suri, Egleston, Brody, & Rudberg, 1999; Troyer & McAuley, 2006); fewer appropriate medical treatments (Allsworth, Toppa, Palin, & Lapane, 2005; Levin et al., 2007; Spooner, Lapane, Hume, Mor, & Gambassi, 2001); and lower rates of influenza and pneumococcal vaccination receipt (Bardenheier, Wortley, Ahmed, Gravenstein, & Hogue, 2011; Travers, Dick, & Stone, 2018; Travers, Schroeder, Blaylock, & Stone, 2018). Family structural changes, declining health for both the family caregiver and the care recipient, and the need for informal family caregivers to work outside the home, have and will continue to have a negative influence on how older adult racial and ethnic minority groups access the support they desire and need. Taken together, these factors suggest a surge in unmet need among older adult racial and ethnic minority groups (Casado, van Vulpen, & Davis, 2011; Cohn, 2016; Mather, 2016).

In the recent past, substantial efforts were made to guarantee that older adults living with chronic conditions had equitable access to HCBS outside of institutionalized care while still meeting their care needs (Ryan, 2015). Programs of All-Inclusive Care for the Elderly (PACE), an exemplary model of a successful HCBS and adult day center-based, provides a comprehensive, coordinated set of health and social services to nursing home-eligible older adults 55 years of age and older, enabling them to remain in their homes (Bodenheimer, 1999; Eng, Pedulla, Eleazer, McCann, & Fox, 1997). These health and social services include primary care, nursing care, medications, vision and hearing, dental care, mental health services, physical, occupational, and speech therapies, music, bingo, art, yoga, aerobics, day trips, holiday and cultural celebrations, socializing, nutrition planning, in-home support, and spiritual care. Central to the PACE model is the belief that it is better for the well-being of older people with chronic care needs and their families to be served in the community whenever possible (Bodenheimer, 1999; Eng et al., 1997). Unlike many nursing homes, PACE has been found to align with the needs of racial and ethnic minority dual-eligible older adults (defined in this study as Black or Hispanic persons and hereafter referred to as “minority” who are eligible for both Medicare and Medicaid benefits) with the potential to reduce health disparities (Friedman, Steinwachs, Rathouz, Burton, & Mukamel, 2005; National Pace Association, 2017). Nationally, PACE enrollees experience fewer hospital admissions when compared with similar persons enrolled in non-PACE programs and PACE programs are more effective in reducing long-term nursing home placement, especially for those with cognitive impairment (Meret-Hanke, 2007; Mui, 2002). PACE enrollees also report improved quality of life and have lower mortality rates than persons receiving standard home and community-based health services or nursing home care (Beauchamp, Cheh, Schmitz, Kemper, & Hall, 2008; Mui, 2002). Finally, enrollees and families are highly satisfied with the 24 hours a day and 7 days a week access to care (delivered at the PACE site or in the home) and ability to call for assistance that is provided through PACE programs (Beauchamp et al., 2008; Hirth, Baskins, & Dever-Bumba, 2009).

Because of its effects on improving health outcomes and decreasing inequities in care among frail dual-eligible individuals, PACE’s 132 organizations in 31 states might benefit approximately 3 million U.S. older adults who could be helped by PACE (currently serving 53,899 older adults) (Mukamel et al., 2007; National PACE Association, 2020b; Tan, Lui, Eng, Jha, & Covinsky, 2003; Temkin-Greener & Mukamel, 2002). This is important as changes in U.S. racial and ethnic demographics are rapidly increasing the need for care in PACE settings among Black and Hispanic older adults (Feng et al., 2011). Moreover, reform is underway regarding existing long-term services and supports and policies to ensure that this population’s equal access to and optimal use of services are closely aligned with the goals of providing the highest quality of care in the least restrictive environment (Alley, Liebig, Pynoos, Banerjee, & Choi, 2007; Congress.gov, 2019). To accomplish this goal, increased understanding of factors influencing access to and use of PACE is critically needed.

To our knowledge, no evidence exists of minority older adults’ perceptions related to access to and use of PACE services. Instead, work has been conducted on PACE’s history, the quality of services delivered by the program and the outcomes of enrollees (Beauchamp et al., 2008; Gross, Temkin-Greener, Kunitz, & Mukamel, 2004; Hirth et al., 2009; Meret-Hanke, 2011; Mukamel et al., 2007; Mukamel et al., 2006; Segelman et al., 2014; Shaw, 2014; Tan et al., 2003; Temkin-Greener & Mukamel, 2002; Wieland, Boland, Baskins, & Kinosian, 2010). Increased understanding of this population’s perceptions is essential to inform the design of interventions aimed at improving minority older adults’ full access to and optimal use of high-quality PACE services. Moreover, this information provides an opportunity for PACE to reach more of the high-need/high-cost older adult population and optimize enrollment. To address these knowledge gaps, we explored perceptions of the access to PACE programs (Aim 1) and the use of PACE services (Aim 2) for minority older adults among a purposive sample of PACE enrollees and other key informants (family caregivers of current PACE enrollees and PACE marketers).

Methods

Research Design, Operational Definitions, and Conceptual Model

A qualitative descriptive design triangulating focus groups with PACE enrollees and key informant interviews with family caregivers and focus groups with individuals from the PACE marketing team were employed to understand access to and use of PACE for minority older adults. We chose a qualitative descriptive approach because this phenomenon is poorly understood. This approach allowed us to obtain a rich description of the phenomenon directly from older persons. Using focus groups as the primary data collection strategy gave study participants the opportunity to hear and respond to other participants’ experiences regarding this phenomenon (Sofaer, 1999). The key informant interviews corroborated the focus groups and provided a more complete view of access and use of PACE for minority older adults (Barbour, 1998; Marshall, 1996). One-on-one interviews have been recommended for difficult to reach target participants which was the case for the family caregivers. PACE enrollees were the primary group of interest. Marketers and family members were key informants. Marketers were included because they are responsible for recruiting older adults to PACE and can provide information on factors influencing enrollment. Family members were included because they are likely to influence older adults’ access to and use of PACE services. Access was operationally defined as the means of learning about or enrolling into PACE; use was operationalized as the action and experience of using PACE services while enrolled. All study activities took place in 2018.

Andersen’s Behavioral Model of Health Services Use (Behavioral Model) informed the study design (Andersen, 1995). The Behavioral Model is well supported and aims to predict or explain the use of healthcare services (Andersen, 1995). In our study, this model was critical to understanding how and why minority older adults access and use healthcare services (i.e., long-term services and supports); and identifying possible interventions and policies that would allow equitable access to and use of services (Andersen, 1995). To predict or explain one’s use of healthcare services, this model particularly focuses on an individual’s predisposition to use healthcare services, enabling factors facilitating use, and one’s perceived or influenced need for care. The Penn Institutional Review Board deemed this study exempt.

Sample and Recruitment

A variety of strategies were used to recruit our sample. Key personnel, e.g., recreational therapists and leaders from two PACE organizations (two sites in one organization and one site at the other) located in a northeastern U.S. urban city (Philadelphia) assisted in recruitment. Examples of recruitment strategies included speaking at study team-sponsored “town halls” where the study was described to potential participants, mailing IRB-approved informational flyers to PACE family caregivers, leveraging snowball strategies (Biernacki & Waldorf, 1981), and targeting invitations to family caregivers by PACE personnel (e.g., the Reverend at one of the PACE sites) who had close relationships with family caregivers.

Potential participants who met eligibility criteria (described in the following sections) and agreed to learn more about the study were then contacted by telephone or in person. During these encounters, they were provided with additional information on the study aims, confidentiality procedures, incentive, and eligibility criteria. Potential PACE enrollee participants were prescreened in person by the Principal Investigator (PI) or Research Assistant (RA) by using the Six-Item Screener (Callahan, Unverzagt, Hui, Perkins, & Hendrie, 2002) to identify their risk of cognitive impairment; PACE enrollees with two or more errors were categorized as “high risk” and excluded from participation. Potential family caregivers of PACE enrollees and PACE marketing participants were also prescreened according to Tremblay’s characteristics of an “ideal” key informant (Tremblay, 1957) to confirm their ability to describe the experiences of PACE access and use for minority older adults (Burgess, 2003). For example, we assessed whether they had access to the information desired and if they were willing to communicate this information in an objective and unbiased manner. All interested persons who met the eligibility criteria, embodied characteristics of an “ideal” key informant, and verbally consented to proceed were invited to either a focus group (PACE enrollees and PACE marketing personnel) or a one-on-one semi-structured interview session (family caregiver); the informed consent paper process was initiated on site or via telephone before the beginning of data collection.

Eligibility Criteria

Enrollees

The potential sample for this study consisted of all older adults enrolled in PACE at two participating organizations. Enrollees were at least 55 years of age. No upper-end limit was placed on the age of PACE enrollees who participated in our study as long as they were able to hear, respond to questions, and attend the sessions. Individuals whose memories surrounding issues of accessing PACE and whose experiences using PACE services were salient were equally desirable. Thus, those newly enrolled into PACE within 10–45 days before focus group sessions along with those who had used PACE for 45+ days were purposefully recruited. The inclusion/exclusion criteria were as follows. Inclusion- Individuals who were Black or Hispanic, age ≥55 (starting at age 55 is the beginning of PACE eligibility), English speaking, and a PACE enrollee. Exclusion- Individuals who were not Black or Hispanic, had hearing or speech impairments, or did not meet the established cognitive status threshold (two or more errors on the six-item screener, indicating high risk for cognitive impairment).

Family Caregivers and Marketers

Family caregivers were required to be currently responsible for a minority older adult enrolled in PACE to participate. Their participation did not depend on the PACE enrollee’s participation in the study, nor did they need to live with the PACE enrollee who they were responsible for. Marketers were required only to be designated as members of the PACE marketing team. Both needed to embody characteristics of an “ideal” key informant as defined previously. No further exclusion criteria were placed on family caregivers and marketers.

Data Collection

Focus groups and one-on-one telephone interviews were used to elicit data from enrollees, family caregivers, and marketers. Data collection took place between the months of February 2018 and June 2018. All focus groups and interviews were conducted in English.

Enrollees

We conducted four focus group sessions with six to ten PACE enrollees in each session (Krueger & Casey, 1994). Qualitative experts have found that three to six focus groups can achieve data saturation and recommend 6–12 participants in each focus group (Krueger & Casey, 1994; Morgan, 1997).

Family Caregivers and Marketers

Four one-on-one telephone interviews were conducted with family caregivers of PACE enrollees. For the marketing team, we conducted two separate focus groups. Focus groups were conducted according to each organization and consisted of four and two key informants in each focus group, respectively. The anticipated sample for the second focus group was six; however, owing to weather related conditions on the scheduled date, only two attended. Because of initial difficulties with scheduling, it was decided to proceed with the focus group session. We did find this focus group to be robust with similar information to that in the first focus group emerging. Additionally, because the family caregivers and marketing team members were meant to only be additive to our findings from the PACE enrollee focus groups, we chose not to add an additional focus group.

Interview Guide

The research team developed three role-specific semi-structured interview guides (PACE enrollee, family caregiver, and marketer). Each interview guide was informed by the Behavioral Model, literature review, and experts in the field (Online Appendices B–D) (Andersen, 1995; Scheppers, Van Dongen, Dekker, Geertzen, & Dekker, 2006). Before initiation of any interviews, the guide was evaluated by peers, one qualitative research expert, and two key informants to ensure clarity. The guide was used as a data collection tool during all focus group and interview sessions and as the basis for discussion. With this tool, we elicited information about perceptions of PACE access and use for minority older adults associated with the three Population Characteristics: Predisposing Characteristics, Enabling Resources, and Need, as posited by the Behavioral Model.

Other Instruments

A demographic questionnaire was developed for all participants. Questions consisted of age, gender, racial/ethnic status, income, and years enrolled or working at PACE. This questionnaire was completed on paper or via telephone and lasted 5 minutes or less.

Procedure

Focus groups with PACE enrollees and marketers took place in a private conference room at the PACE facility of recruitment, and one-on-one key informant interviews with the family caregivers took place via telephone. All sessions were scheduled at a time convenient to the participants and facility. Prior to the start of focus groups or interviews, informed consent was obtained. Participants received a detailed description of the study before data collection began. Participants were informed that they could refrain from answering any question, leave the session, or stop the interview at any time. They were also told that their participation would not affect the services that they or their family member were receiving from PACE or their employment status. Each consenting PACE enrollee and marketing participant received a $30 Visa gift card for their time upon completing the focus group sessions. This incentive was approved by administration at the PACE sites as well as the IRB, deemed uncoercive, and the study had minimal risks (Grant & Sugarman, 2004). Each consenting family caregiver received a $30 Visa gift card via mail upon completion of the phone interview. Healthy food options were made available for focus group participants.

The PI served as the primary moderator and interviewer during the focus group sessions and facilitated discussion. Two RAs served as assistant moderators and were responsible for note taking and logistics (e.g., assisting participants with personal needs, and collecting consent and demographic questionnaires) (Krueger & Casey, 1994). All telephone interviews with the family members were conducted by one RA (SD). The PI reviewed all audio versions of the caregiver transcripts for completeness and all transcripts for all of the focus groups and interviews. All investigators and RAs were trained regarding the responsibilities of their position and completed all human subjects trainings and certifications before initiating research with human participants.

Trustworthiness

To ensure the adequacy and quality of the data, including collection, specific techniques maximizing the completeness and trustworthiness of the data were applied during the interviews and focus group sessions, including: (a) using explicit criteria to evaluate the data being collected (e.g., restating responses to confirm interpretations of the data, a form of member checking which allows for confirmability); and (b) using established interviewing techniques known to be successful (Sandelowski, 1986). Open discussion along with sharing of various views were encouraged. Data from PACE enrollee focus groups were triangulated with data from key informant marketing team member focus groups and family caregiver interviews, thus enhancing the credibility of our findings (Sandelowski, 1986). Sessions were audio-recorded, professionally transcribed verbatim, and reviewed for accuracy by the research team.

Data Analysis

Analysis began iteratively with data collection. First, two coders (SD and SK) used a directed content analysis approach (Hsieh & Shannon, 2005) to identify categories based on Predisposing Characteristics, Enabling Resources, and Need under the Population Characteristics domain of the Behavioral Model (Andersen, 1995). Next, additional emergent codes, categories, and themes were identified through a conventional content analysis approach (Hsieh & Shannon, 2005). Emerging findings were discussed during weekly team meetings to ensure consensus in interpretations. After development of the final codebook, all data were coded by two investigators, one transcript at a time. Weekly team meetings were held to reconcile data, reflecting an agreement of > 80%. NVivo 10 qualitative data analysis software was used to organize and facilitate tracking of the data, to ensure dependability. Analysis concluded when no new themes emerged from the data. Upon completion of analyses, we presented general findings to a group of administrators at one of the organizations and shared a summary brief of the general findings with the other organization.

Results

Description of Study Participants

PACE Enrollees

A total of 32 enrollees participated in the four focus groups. PACE enrollees were predominantly Black (n=30, 93.8%) and female (n=23, 71.9%). The average age was 70 years (range 58–93). Nearly 85% (n=27) of enrollees had at least a high school diploma or GED, and more than half lived alone and were responsible for their own care (n=18, 58%). Enrollees had an average enrollment of 3 years in PACE, ranging from 1 week to 8 years.

Marketing Team and Family Caregivers

The average time of employment for marketing team members at PACE was 7 years. Family caregivers on average were 58 years old (range 33–74). None of the family caregivers lived with the PACE enrollees. A full description of all study participants is provided in Table 1.

Table 1.

Demographic Characteristics of Study Participants

Characteristic	PACE Enrollees (n=32)	Marketing (n=6)	Caregivers (n=4)
Agea
Mean (SD)	70.2 (8.77)	31–40	57.5 (18.70)
Sex –n (%)
Male	9 (28.1%)	1	2 (50.0%)
Female	23 (71.9%)	5	2 (50.0%)
Race–n (%)
Black	30 (93.8%)	3 (50.0%)	4 (100.0%)
Hispanic	1 (3.1%)	1 (16.7%)	0 (0.0%)
Otherb	1 (3.1%)	2 (33.3%)	0 (0.0%)
Education–n (%)
Some high school or less	5 (15.6%)	0 (0.0%)	1 (25.0%)
High school, GED	9 (28.1%)	0 (0.0%)	0 (0.0%)
Trade/vocational training	9 (28.1%)	1 (16.7%)	2 (50.0%)
College and beyond	9 (28.1%)	5 (83.3%)	1 (25.0%)
Household Members–n (%)c		Not asked
Lives alone	18 (58.1%)		0 (0.0%)
Lives with one other person	6 (19.4%)		3 (75.0%)
Greater than two	7 (22.5%)		1 (25.0%)
Home Caregivers–n (%)d		Not asked	Not asked
Self	18 (58.0%)
Spouse/Partner	2 (6.5%)
Child	7 (22.6%)
Sister/Brother	1 (3.2%)
Niece/Nephew	2 (6.5%)
Friend	1 (3.2%)
Marital Status–n (%)e		Not asked
Never married	4 (12.9%)		1 (25.0%)
Married	4 (12.9%)		3 (75.0%)
Living with partner	1 (3.2%)		0 (0.0%)
Divorced	8 (25.8%)		0 (0.0%)
Separated	4 (12.9%)		0 (0.0%)
Widowed	10 (32.3%)		0 (0.0%)
Program Location–n (%)
Organization 1	15 (46.9%)	4 (67%)	4 (100.0%)
Organization 2	17 (53.1%)	2 (33%)	0 (0.0%)
Years at PACE
mean (SD)	3 (2.58)	7 (2.65)	2.6 (1.11)

^aAge was asked as a range for marketing participants

^bA Hispanic PACE enrollee identified with the “Other” race

^cn=1 missing for PACE enrollee

^dn=1 missing for PACE enrollee

^en=1 missing for PACE enrollee.

PACE= Programs of All-Inclusive Care for the Elderly, SD= Standard Deviation, GED= General Education Development.

Primary Domains and Subthemes

Several subthemes emerged within the Predisposing Characteristics, Enabling Resources, and Need domains, thus enhancing knowledge about the roles of informed knowledge; cultural beliefs; attitudes towards PACE; personal/family/community/psychological; availability; quality of care; barriers to access; guiding resources; healthcare needs; and PACE meeting service and care needs in perceived access to and use of PACE services for minority older adults (see Figure 1 for a flow chart of these domains and subthemes and Online Appendix E for exemplar quotes).

Figure 1.

Organization of themes by Andersen’s Behavioral Model of Health Services Use

Predisposing Characteristics

The predisposing characteristics domain included the sociocultural subthemes that existed before an older adult enrolled into PACE (i.e., informed knowledge, cultural beliefs, and attitudes towards PACE).

Informed Knowledge.

Participants discussed their knowledge about PACE originating from the site’s recruitment techniques, word of mouth, and healthcare provider education and referrals. Participants who learned about PACE through word of mouth discussed receiving this information from current enrollees, social workers, family caregivers, and healthcare providers. Senior housing information sessions were common venues for recruitment to PACE. Several participants mentioned searching for and comparing PACE with other programs such as standard home and community-based services or Pennsylvania’s Community HealthChoices (mandatory managed care program) before enrolling.

Cultural Beliefs.

This subtheme acknowledged the presence of language barriers between participants and staff along with the role family culture played in choosing whether to enroll in PACE. Members of the marketing team summarized challenges to recruiting potential PACE participants, stemming from language barriers. A member of the marketing team explained, “[I’m mindful] of the marketing aspect of how we present to other cultures and other ethnicities. We want them to understand the program, but we are speaking to them in a whole different language.”

In addition, some members of the team specifically mentioned that language barriers may persuade older adults to join other non-PACE programs that communicate with potential participants in their native language. For example, a marketing team member said:

If I don’t have marketing material that provides information in their language, I just wasted my time. Or you might have a different agency that does provide that, and because they understand that information, they’re more willing to pick that agency versus us.

The culture and dynamics of the family also appeared to play a major role in joining PACE. Enrollees’ family members wanted the PACE enrollee to get out of the house and “look for something to do and somewhere to go.” Caregivers expressed appreciation that PACE allowed them to do that. As a caregiver shared:

She’s somebody that needs to be there all day, because there’s nobody that can stay home and take care of her. So, you know, it’s a good place for her to go, and see other people and do things.

Attitudes Towards PACE.

Attitudes towards PACE encompassed positive and negative perceptions about PACE, including perceptions of the role of PACE in older adults’ lives and the notion that one gets out what one puts into PACE.

An enrollee of PACE specifically describes it as such:

The only thing you can do is put forth the effort. I know when I first came, I just loved the fitness center: What you gonna do, just sit there all day long? … You have to apply yourself.

There was an evident and significant shared belief that PACE programs were rooted in maintaining the independence of older adults. However, many feared that the program sounded “too good to be true.” Such apprehensions during recruitment to PACE included fear of estate/property recovery and confusion about enrollee eligibility. As one enrollee explained, “The biggest barrier is I didn’t know whether they took your house. That was not clear—and it still is not clear.”

Older adult enrollees also discussed misinformation and the withholding of information when enrolling in PACE services. For example, a participant shared being unaware of not remaining a patient of their previous primary care provider:

They said something about needing to change insurance, and you can’t go to any other doctor. I had a family doctor. They told me, “Well, you can’t go to that doctor anymore.” I could never understand that. I had been going to him so long.

Positively, PACE relieved the financial burdens previously assumed by older adults and their families through low- or no-cost medications and zero co-pays. Many also mentioned the incentive of having insurance coverage through PACE, including vision and dental.

Enabling Resources

We analyzed the data for Enabling Resources, operationally defined as aspects/resources that influenced how PACE care was obtained and used. We included barriers and facilitators as proxies for factors that enabled access to and use of PACE services. This theme was prominent among enrollees of PACE services and their caregivers along with members of the marketing team.

Personal/Family/Community/Psychological.

Family education and support emerged as a salient subtheme in enabling potential enrollees to receive services from PACE. Community healthcare providers were additionally important because of their role in providing referrals based on potential participants’ needs and eligibility status. One enrollee noted:

My doctor told me about the place here because I kept falling and falling. And I went to the hospital. They wanted to put me in, what do you call them? Like a nursing home. My doctor said that “you’re doing good” and that I don’t belong there. So, they brought me here. I’ve been here for a year.

When asked why they chose to use PACE, enrollees discussed being fulfilled by simply knowing that they had someone there for them or someone to keep them company. The sense of community and social connection that PACE provided was one of the most important aspects to enrollees. As one enrollee said:

This is where you come to meet people. This is where you find people who are aging like you are. You’re in the same situation, but it’s just because you have people around you that’s able to meet every need that you have.

Availability.

Having the availability of essential services emerged as an Enabling Resource that drew potential enrollees to PACE services, particularly transportation, pharmacy, doctor appointments, healthcare services and providers, and entertainment and activities.

Availability of transportation was a frequent topic, especially transportation to and from the PACE center. A marketing team member stated, “One of the bigger things that helps our family members is the transportation, knowing that they don’t have to take off from work so often, or they don’t have to travel to get to their loved one each time that they have a doctor’s appointment.”

Along with transportation, PACE enrollees frequently shared their opinions about the activities and entertainment that PACE offers. One enrollee described activities that were particularly meaningful:

I especially like Wednesdays and Fridays because I like art. I’m drawing a couple of pictures for a couple of people right now, and I can’t get it done in one afternoon, so I take my time and get it done, and before you know it, it’s all done. I just have to wing it every day. Just one step at a time.

Others found the availability of activities at PACE as filling the void of doing nothing at home before PACE. One enrollee noted, “I was bored [at home], and I love it [at PACE]. I love it right here—the people, the staff and what they teach you. I made this jewelry, and I got lots more at home that I made here, and I just love being here.”

Quality of Care.

Participants discussed the quality of care received by enrollees at PACE and how it shaped their perceptions of PACE care delivery. This included subthemes around an interdisciplinary team approach to care delivery, thoughtful and respectful staff, language concordance, access to medication and reliability of care services, promotion or restriction of independence, socialization, relationships, transition, and aging.

Enrollees appreciated having an interdisciplinary team approach to their care delivery; however, experiences surrounding staff quality with regard to thoughtfulness and respect varied, and opportunities for quality improvement were salient. Ageism emerged within discussions about staff among enrollees of PACE services, who said the staff of the sites treated them like children rather than adults:

The fact that they treat you like kids sometimes, that just boils my blood. And they’re not hearing what I’m saying. They’re trying to tell me something different, and I’m saying something to them about how I feel or what’s going on. And they’re trying to tell me that I’m saying something different. That’s really irritating.

Because the PACE enrollees are diverse, staff language barriers were also discussed. For example, one marketing team member said, “When it comes to the staff, we don’t have a lot of staff members that speak Spanish [in the case of the Spanish-speaking community]. … We’re not as diverse, which may affect enrollees communicating or expressing their needs and how they build relationships with staff at the center.”

Care and service delivery were described to be unreliable at times, as shared by PACE enrollees in examples of specialty appointments outside of PACE falling through the cracks and overall miscommunication between staff and enrollees. As one participant said:

I didn’t have an appointment; they [PACE staff] made an appointment for me. They came to pick me up. We went to the appointment. The doctor said they don’t have any appointment for me. That happened three times. Now my daughter makes the appointments.

Enrollees also discussed the need for PACE to make programs and activities more accessible and adaptable for those with disabilities. Regarding more diverse activities, enrollees expressed that PACE could improve by providing more “fun” activities that cater to individual functionality and personal preferences. One enrollee said:

They said they offer activities for everybody, but all the activities are geared toward sighted people. And the staff is not sensitive [to this]. They need more sensitivity training. Just little things that they could do to make things accessible and adaptable.

Finally, PACE enrollees voiced concerns about the changes in Town Council meetings. Town council meetings were centered on representatives in various roles (e.g., recreational specialist) who reported out on updates and the entire group discussed what was going well at PACE and areas where things could be improved. Town Councils included all PACE enrollees who could attend, administrators, and staff. Previously, this was a safe place for enrollees to voice their opinions. Without resident input, enrollees felt that Town Councils were strictly geared to administration. Furthermore, PACE enrollees developed a fear of voicing their opinions and often felt that their opinions no longer mattered. They were intimidated mostly because the meetings were no longer private. Enrollees expressed that they miss the collaboration between staff and enrollees to make PACE a better place.

Barriers to Access.

Discussions surrounding barriers existing in decision-making raised personal accounts of limited knowledge about the program, trust, misunderstanding, and paid caregivers.

Although many enrollees expressed gratitude and satisfaction for the program, they also expressed concerns. For example, a lack of advertisement leads to a lack of knowledge about the program among the general population. Creating more accessible commercials was suggested as a resource that may help more people learn about PACE and increase the education of health providers who provide referrals to PACE services. Some enrollees also expressed a fear of rejection of admission due to their medical history such as previous illicit drug use, because they were not fully aware of the eligibility requirements. When speaking of eligibility requirements of attending a PACE site, some members expressed concern that other members in their community could not benefit from a PACE service due to their income. As one member put it, “My neighbors see how happy I am every day. I come home [from PACE] and they ask me questions about how they can be part of [the PACE site]….I brought him a brochure but turns out he is not qualified because he has too much money.”

Participants discussed trust in the context of receiving the services that were presented or having a diverse provider. The marketing team seemed aware of this, as one individual stated, “Caregivers have asked us, ‘How can you help my mother or my father? What can you do for us?’ Everybody has different backgrounds, different needs. It’s a case-by-case situation. So, they want to know how my mom or my father can benefit from your program, because what may work for someone else may not work for my mom.”

Guiding Resources.

Guiding resources included resources such as advertisement and healthcare provider education that helped to recruit or facilitate the decision for minority older adults to use PACE. For advertisement, mailing promotional materials through purchased mailing lists was a common technique shared by marketing team members, but PACE enrollees offered other potential techniques to spread the word as one enrollee mentioned, “I think it would be good if it were on television and radio and you target the stations that everybody listens to, or most people listen to.” In regard to healthcare provider education, a member of the marketing team shared that that they didn’t know if the Philadelphia Corporation for Aging (a nonprofit organization within the Area Agencies on Aging that coordinates a broad range of services that help older Philadelphians live as independently as possible) did training for medical professionals on the services that PACE provided, but noted that medical professionals should share this information when they provide their assessments on patients, as medical professionals, “provide services throughout the city, so they also should include [PACE] in their explanation of all the services that are welcome to [older adults].”

Need

Participants described needs in two areas: healthcare needs, and PACE meeting service and care needs.

Healthcare Needs.

Enrollees discussed their healthcare needs as centering around their comorbidities, the desire to avoid frequent visits and use of emergency department services, and the need for functional and mental health support.

The case for avoiding frequent visits to the emergency department through daily accessible and preventive care at PACE was a prevailing subtheme among the marketing team and caregivers. However, during the focus groups, functional support was the most tangible aspect discussed in terms of improvement of health. As a PACE enrollee explained, “I went blind, and I was just bored. I didn’t have nothing to do but sit in a room listening to TV. So, since I came here, I felt as though I could start using my hands again.”

PACE Meeting Service and Care Needs.

Study participants often mentioned the benefit of having service and care needs met through PACE, which optimized their use of PACE. Service needs consisted of tangible assistance such as transportation, food availability at the site, and access to health insurance and housing. As one enrollee explained, “I think the most important thing is just making it here. Once you’re here, you realize that everything is taken care of for you; then there’s nothing else to worry about.”

Care needs included coordination of care and spiritual needs. Enrollees viewed PACE as a “one-stop shop” that they could rely on for coordinated care, allowing them to go home with peace of mind. One participant explained her understanding of PACE in the following way, “I think it’s an all-inclusive program for seniors. It takes care of your physical as well as mental, as well as all of your needs, really. It gives you a way to exercise. It gives you a way to meet with other seniors. I think it’s an all-inclusive program for the benefit of enhancing senior life.” The medical concerns of PACE enrollees were taken care of, and they could surround themselves with others as they took a break from their daily routines. This was equally important to the caregivers as well. As one mentioned, “I know that they do like various activities for seniors and healthcare and meals. And they give them a place to congregate and talk to each other, get informed on certain things about different stages of life.” In addition to the quality of care they received at the site, they were satisfied with the availability of after-hours care, such as Meals on Wheels, which allowed enrollees to feel safe at home after attending PACE.

Discussion

Limited evidence exists on factors influencing minority older adults’ access to and use of PACE programs. Therefore, we explored perceptions of facilitators and barriers related to this program’s access and use by allowing minority PACE enrollees to express their personal views and experiences. Family caregivers along with marketing team members were included to corroborate study findings. These diverse key informants expressed similar perceptions, benefits, and challenges with access to and use of PACE programs for minority older adults in the Philadelphia area.

Study participants expressed that knowledge and insights about PACE were predominantly shared through word of mouth. PACE enrollees learned about the program’s existence and how it could help them from neighbors, family, and friends who were either currently a part of PACE or familiar with the resources. These findings suggest that the community in which individuals reside plays a significant role in their informed knowledge of PACE and what it offers. To recruit and attract a larger minority group, increased efforts toward community outreach are critical (Beeber, 2008). One suggestion made throughout the interviews was the need to expand this role of promotion to community healthcare providers. Educating healthcare providers on the benefits of using PACE for their patients may help introduce more individuals in different communities to PACE programs. Area Agencies on Aging, public or private non-profit agencies designated by the state, also are responsible for sharing resources to assist individuals in their current and/or future long-term services and supports needs (National Association of Area Agencies on Aging, 2020). It would be important to ensure that PACE is one of the resources being shared within these Agencies.

Attitudes expressed toward the utilization of the PACE program after enrollment, provided important information on the everyday effects of the services and interdisciplinary care on both enrollees and family caregivers. In our study, expression of self-advocacy affected what enrollees and family caregivers gained from the services of PACE. Enrollees who fully participate in all PACE offers—e.g., recreational activities, healthcare services, social work, and physical therapy/occupational therapy—are likely to be enrollees who may get the most out of PACE. Maximizing self-advocacy and independence is at the core of the mission of the PACE programs (Medicaid.gov, 2020). At the national level, PACE programs strive to provide the most comprehensive services that allow individuals to remain involved members of their communities (Medicaid.gov, 2020). By offering all-inclusive care at an interdisciplinary level, PACE providers not only treat medical issues but also give PACE enrollees the space to remain independent and advocate for their own needs (Medicaid.gov, 2020).

Despite a national PACE focus on independence, the theme of ageism did emerge in our findings; that is, staff seemed to assume generally that enrollees cannot be independent (e.g., schedule appointments or have a say in their healthcare needs). Many enrollees expressed the feeling of being “babied” and that society’s belief of the elderly’s fragility limits their independence. Other studies have similarly highlighted the minority older adult’s desire to maintain independence and fears of losing this independence (Mold, Fitzpatrick, & Roberts, 2005). Indeed, unconscious bias and stigma may be at the root of the discrimination experienced by older adults or it could be that healthcare personnel are failing to discriminate areas of independence. Efforts are underway to disrupt bias and stigma towards aging, but these efforts need to be supported on local levels as well (Busso, Volmert, & Kendall-Taylor, 2019; Reynolds, 2020). It is important that staff members of PACE programs, especially direct care workers, are educated on how to deliver care to the geriatric population that is unbiased and promotes independence (Aronson, 2019).

Lack of cultural diversity/sensitivity along with language discordance were also noted by our study participants to have an influence on minority older adults’ decisions on whether or not to enroll into the PACE program. Research highlights that minority older adults’ desire to have their cultural needs recognized. A low uptake of services could be linked to perceptions of culturally inappropriate care (i.e. lack of interpreter services, incongruent staff). This social barrier further leads to fears of isolation, loss of independence, and lack of recognition of religious and cultural needs (Mold et al., 2005). Because of this, there is a need for community-based services to recognize older adults’ ethnicity and culture when aiming to provide appropriate care that meets the individual needs of their enrollees. Additionally, barriers in communication as a result of language differences can affect knowledge of programs such as PACE among non-English speakers (Holmes, Teresi, & Holmes, 1983). While our findings were limited to the barriers and facilitators to accessing and using PACE for Spanish-speakers these themes are important to the diverse enrollees of PACE outside of Hispanics (e.g., Mandarin speakers). Hiring staff that speak multiple languages and having promotional materials in multiple languages were found to be beneficial to improving access to care in our study and should be considered in other areas with multiple dominant languages aside from English.

In addition to independence and person-centered care, social connections with other enrollees and staff were found to be characteristics valued by enrollees in PACE programs. That is, attending PACE allowed enrollees to establish a healthy community. The dynamics of these relationships were especially fostered through the program’s activities, social clubs, and outings. The community nature of PACE is particularly strengthened by helpful, friendly, and respectful staff members. In addition to highlighting PACE as a “one-stop shop,” where enrollees come and receive care for all of their healthcare needs, it also important to ensure the social aspect of PACE is emphasized (Hirth, Baskins, & Dever-Bumba, 2009).

Policy Implications

There are important policy implications that emerged from our study findings. Legal reforms were enacted recently allowing much more regulatory and operating flexibility for PACE organizations (Centers for Medicare & Medicaid Services, 2019; National PACE Association, 2020b). Such reforms are already having several impacts, including the entry of private equity funded programs (for-profit) into PACE markets, and a boost in the number of PACE organization, sites, and enrollees through the new PACE 2.0 initiative which has a focus on the high needs high costs population and growing PACE to 200,000 individuals (National PACE Association, 2020b). Such expansion related to a for-profit PACE certainly affects the demographics of PACE enrollment at the margins from the prior time in which most PACE organizations were non-profits founded by grass-roots groups with missions of serving urban and poor communities comprised in large part by racial and ethnic minorities in their narrow catchments, or health services areas (Bodenheimer, 1999; Gonzalez, 2020). While these efforts are laudable, it is important that a focus on the recruitment of racial and ethnic minorities to PACE and quality of care are maintained in the midst of increased flexibilities for PACE organizations and an introduction of other managed long-term services and supports (MLTSS) HCBS programs such as Pennsylvania’s Community HealthChoices in 2018 which creates increased competition (Pennsylvania Department of Human Services, 2020). Indeed, research has shown that PACE might be more beneficial than MLTSS for minorities as PACE has a lower likelihood for nursing home placement when compared to HCBS waiver programs like MLTSS (Segelman, Cai, Van Reenen, & Temkin-Greener, 2017). Findings from this study provide information to support increased recruitment and retention efforts by PACE.

Aligned with PACE expansion initiatives, in the PACE Innovation Act of 2015, CMS authorized a waiver of provisions to Section 1934 of the Social Security Act to include those under 55 years of age and older adults who did not require a nursing home-level of care (Congress.gov, 2015; Parfaite-Claude, 2017). When this idea was presented to enrollees during interviews, many said that they would appreciate including a wider variety of people in their community of PACE. Moreover, through interviews, we learned that a sense of community was a priority for enrollees and their caregivers. Thus, expansion of policies such as the PACE Innovation Act of 2015 may potentially add to the strong, diverse community, including enrollees, of PACE service environments and thereby meet the health and social needs of a greater age range, although we suspect that care need and appeal to activities will vary across age groups. Future research is needed to determine the effects of expansion, especially in terms of recruitment of racial and ethnic minorities, overall satisfaction, healthcare utilization, and physical and social improvement within the older adult population.

In terms of policy surrounding the affordability of PACE services, this barrier is just starting to receive attention. PACE provides care for no deductible or copayment if an individual qualifies for Medicaid (Medicare.gov, n.d.). Currently, those with only Medicare are charged a monthly premium to cover long-term services and supports and medications. Those who do not qualify for Medicaid can elect to pay out of pocket. Notably each participant interviewed was dual-eligible for both Medicare and Medicaid. One important revelation in an interview was a concern for a friend in the community who would greatly benefit from PACE services, but had too much money to qualify and too little money to afford the monthly deductible. This is a large barrier to accessibility of PACE, especially for people who identify as minorities in Philadelphia. After obtaining such strong approval and feedback around PACE programs and given what we know about the quality of care delivered and outcomes achieved in PACE, it is a disservice not to offer these services to a greater share of individuals. It is expected that PACE Medicare payments will increase by 2.9 percent in 2021 and contingent on legislation passing this year, Medicare-only enrollees would be provided with a choice of Part D coverage (National PACE Association, 2020a). We challenge policymakers/stakeholders to commit to expanding the eligibility for PACE enrollment by modifying financial eligibility and extending financial support in and beyond the anticipated ways.

Strengths

Interviewing different members of the PACE community in Philadelphia, such as the enrollees themselves, family caregivers, and those responsible for enrollee recruitment (i.e., marketers), adds to the current research on PACE programs. To our knowledge, this study is the first of its kind to explore concepts of PACE programs beyond simple implementation and how PACE programs work (Hirth et al., 2009). Getting feedback from those directly affected by PACE resources and policy change provides valuable information that adds to the current literature. PACE programs strive to provide person-centered care. Therefore, involving enrollees in this type of research is critical to optimize accessibility and utilization of such services. With this current work, suggestions can be made to shape current and future policies regarding the older adult population and long-term services and supports.

Limitations

There are a few limitations to note. One of the two marketing team focus group sessions was small because of the participants’ limited availability (n=2). In addition, we aimed to interview at least six caregivers, but interviewed only four because of challenges in recruitment. Nonetheless, these were key informant interviews only meant to add context to the themes that emerged from the PACE enrollee focus groups which was achieved. Next, we only included the perspectives of PACE enrollees who currently have access to and use of PACE, and not non-enrollees who may have difficulties with access to PACE or choose not to enroll into PACE. This limitation prevents us from gaining a more comprehensive understanding of barriers and facilitators to accessing PACE. Lastly, our findings were limited to three PACE sites in Philadelphia and may not be generalizable to the entire population.

Conclusion

This study adds context surrounding perceptions of and facilitators and barriers to accessing an innovative model of health delivery for high-need/high-cost vulnerable older adults (Cortes & Sullivan-Marx, 2016; Naylor & Buhler-Wilkerson, 1999). New evidence gained from this study provides an emic view of PACE enrollees and key informants’ perceptions of access to and use of quality long-term services and supports such as PACE for minority older adults. The study findings may help healthcare leaders and other key stakeholders evolve the PACE model to meet the needs of a rapidly growing minority population requiring these services by focusing on fostering independence, expanding financial eligibility and resources, diversifying social activities, and meeting the cultural and language needs of potential PACE enrollees.

Key Points:

• Informed knowledge, cultural beliefs, and attitudes toward PACE were found to affect access.

• Community resources, available services, and care quality facilitated enrollment/participation.

• Barriers identified included poor dissemination of information and inadequate emphasis on staff’s sensitivity to enrollees’ cultural and disability differences.

Data Availability Statement:

The data collected in this study are qualitative.