Older Adult and Family Caregiver Perspectives on Engagement in Primary Care

Abstract

The purpose of this in-depth qualitative study was to explore the experiences of older adults and family caregivers in primary care. Twenty patients and caregivers from six Comprehensive Primary Care Plus (CPC+) practices’ Patient and Family Advisory Councils within a large academic health system participated in telephone interviews from December 2018 – May 2019. The participants were mostly women (60%), and averaged 71 years old, with 9 chronic conditions. Transcripts were coded using conventional content analysis. Two key themes emerged related to person-centered care: Engagement in Health Care and Patient-Provider Relationship. Engagement in health care was defined by participants as: being proactive, centering on patient goals in treatment discussions, adherence, and self-triaging. Approximately all participants discussed the importance of the relationship and interactions with their provider as influencing their engagement. The identified themes offer recommendations for further improvement of primary person-centered care.

Introduction

The Patient-Centered Medical Home (PCMH) is among the few care management approaches that have targeted chronically ill adults and demonstrated improvements in multiple dimensions of patients’ health, while decreasing costs. Confronting a growing population of chronically ill adults, the PCMH has been identified as a core solution to improve primary care processes and outcomes (Ewing, 2013; Fortuna et al., 2020). The PCMH emphasizes person-centered principles such as access, health promotion, longitudinal relationships and, increasingly, care management of chronically ill populations (AHRQ, 2021). The Patient-Centered Primary Care Collaborative’s reports reflect the substantial growth of PCMHs throughout the U.S. (Nielsen et al., 2015). Additionally, based both on peer-reviewed papers and grey literature, the Collaborative’s reports suggest that the beneficial impact of this person-centered care model on health outcomes and healthcare utilization and costs has improved over time (Nielsen et al., 2015). However, other findings are more equivocal, concluding that PCMHs achieved small positive gains in patients’ experience with care, small to moderate gains in preventive health services and reductions in ED visits but no changes in hospitalizations or costs of care (Jabbarpour et al., 2019; Kempski & Greiner, 2020; Randall et al., 2014). When compared to patients with no usual source of care, positive PCMH patient experience was associated with person-centered outcomes including patient-provider communication, self-management support, and care coordination (Xin et al., 2017).

From 2017–2021, to support implementation and sustainability of primary care models such as the PCMH, the Centers for Medicare and Medicaid (CMS) championed a public-private partnership called the Comprehensive Primary Care Plus (CPC+) model, with 57 payers, 2599 practices and 13,766 practitioners in 18 U.S. regions as of 2021 (Centers for Medicare & Medicaid, 2021). The primary goal of CPC+ is to improve overall performance of primary care practices for the entire population, with particular attention to complex and diverse patient subgroups. CPC+ is focused on engagement, hypothesizing that patients will take a more active role in their care and make informed decisions if they are provided with information about their health conditions. Person-centered care, also referred to as patient-centered care, is defined as “empowering people to take charge of their own health rather than being passive recipients of services” (World Health Organization, accessed 2022). The CPC+ focus on engagement is aligned with the WHO definition of person-centered care, which emphasizes patient empowerment over provider-driven healthcare To promote this person-centered engagement approach, CPC+ practices were asked to convene Patient and Family Advisory Committees (PFACs) to consistently collect and use PFAC feedback to guide practice improvements (Anglin et al., 2020; Peikes et al., 2021). While patients share their feedback in the context of the PFAC meetings, we became interested in a deeper examination of the patients’ experiences. Therefore, the goal of this study was to learn how involved and empowered patients were in their own care, and to what extent their primary care providers facilitated or encouraged a person-centered care environment.

Methods

Design and Setting.

This qualitative descriptive study consisted of telephone interviews with n=20 patients and family caregivers from six primary care CPC+ practice PFACs (Kim et al., 2017). The practices were located in urban (n=2) and suburban (n=4) areas across four counties in the Southeastern Pennsylvania region. A total of 30 full time physicians and 7 advanced practice providers across the six practices provided care to 40,704 active patients in 2018 (range among practices: 2537–12,713 active patients) (Hanlon et al., 2022).

Interview participants.

Study participants were recruited at PFAC meetings between December 2018 to May 2019. Eligibility to participate in the study included: English speaking, 50 or older, and willing to be interviewed by telephone.

Enrollment.

A member of the study team (KBH) attended PFAC meetings and introduced the goals of the study. For PFAC members who were not in attendance, the primary care practice staff member leading the PFAC meeting shared the information by telephone with the PFAC members after the meeting. PFAC members interested in participating provided their contact information, which was shared with the study team. Each person who agreed to be interviewed was contacted by telephone to set up the interview (KBH, JS). A list of details about the purpose of the study were read to the participant, an opportunity to answer questions provided, and verbal informed consent documented. All participants were able to describe the purpose of the study before moving on to the interview as a check of cognitive status. A copy of the informed consent document dated and signed by the interviewer was mailed to the study participant after the interview, along with a $40.00 gift card to thank them for their time.

Ethics.

The University of Pennsylvania Institutional Review Board reviewed and approved this study (Protocol #829929).

Interview Data collection.

A semi-structured interview guide was designed to elicit patient and family caregiver experience with primary care. Participants were first asked about their overall impression about how well they are involved in their care, with probes requesting examples of when they felt included in health care decision making and when they were not included.

Participants were also asked to think about discussions they may have had with their primary care provider (PCP, defined as physician, nurse practitioner, physician assistant) about goals or preferences for care and if they felt their goals and preferences are being considering when visiting their PCP. Additional questions were asked about how prepared they felt to manage their health problems and where they would go first if they had a care need. Interviews lasted between 20–60 minutes. All interviews were recorded with the permission of the interviewee and professionally transcribed.

Analyses.

Guided by a conventional content analysis framework, two independent coders (KBH, ER) reviewed one interview and developed a list of preliminary open codes (Hsieh & Shannon, 2005). Using this preliminary list of codes, each coder independently coded the next two interviews (Elo & Kyngas, 2008). The codes were then reviewed, and definitions collaboratively agreed upon. Next, the two coders grouped codes into categories with exemplars of text for each code based on the first three interviews. Then, all interviews were coded or recoded (initial three) with the final list with 93% agreement (range: 91%−95% agreement) on all double coded documents. All disagreements were resolved through consensus. The full team agreed on the final themes and subthemes. Methodological trustworthiness of the process was ensured by keeping an audit trail of decisions made during coding (confirmability), differences were examined in the use of the codes across all PCP sites (transferability), and representative quotations to illustrate each of the final categories were developed (credibility) (Graneheim & Lundman, 2004; Houghton et al., 2013; Koch, 2006; Polit & Beck, 2012).

Results

Twenty individuals participated in interviews. Six participants came from the two urban practice PFACs and 14 came from the four suburban practice PFACs. Details about the respondents are available in Table 1. Three participants self-identified as also being a caregiver (i.e., two of the participants were married to each other and a third cared for their parent) and each provided information from their experiences both as a patient in the practice and a caregiver of a patient in the practice. Qualitative analyses revealed two key themes: defining the experience of engagement in healthcare and the importance of the patient-provider relationship. The codes, definitions, exemplar quotations, and case counts for each theme are presented in Table 2.

Table 1.

Study Participant Demographics, Clinical Characteristics and Primary Care Provider Visit Pattern (N=20)

Demographics and Clinical Characteristics	n (%)
Gender
Woman	12 (60%)
Man	8 (40%)
Race
White	19 (95%)
Black	1 (5%)
	Mean±SD (Range) [median]
Age, years	71.2±9.5 (50–87) [72]
Number of chronic conditions	9.1±3.9 (1–18) [9]
Number of medications	12.0 ± 4.8 (4–20) [12]
PCP Visit Pattern	Mean±SD (Range) [median]
Primary care practice visits in the previous year	4.8±3.3 (0–13) [5]
Phone consults in the previous year	14.3±11.7 (2–40) [11]
Specialist visits in the previous year	7.0±6.4 (0–27) [6]

SD = standard deviation; PCP=Primary Care Provider (e.g., physician, nurse practitioner, medical assistant)

Table 2.

Themes and Codes with Definitions and Exemplary Quotations of Patient Engagement in Their Healthcare, N=20

Theme Subtheme	Case count	Definition	Exemplary quotation
The experience of engagement in healthcare, n=18
Proactive	16	Seek out help on their own, asks directed questions.	“I’m not passive… if I have any questions, I write them down.”
Goals-based treatment	13	Treatment is goals based and explicitly about treatment decisions, discussions, treatment plan.	“If someone tells me to do this or do that, I’d like to know why and what’s the benefit, and the risk of something.”
Adherence	9	Being adherent or compliant, following through on treatment	“And I listen to what they say and I do it and I don’t dwell on it.”
Self-triage	8	Decisions about where or when to seek care, self-management.	“If it had to do with my heart or something like that, I’d go to [my cardiologist]. But if it was something I wasn’t sure of, I would probably start out at [primary care].”
Experiences of the patient/provider relationship, n=20
Holistic	13	Extent to which treatment is considerate of multimorbidity; incorporating information from other providers and tests.	“I actually had the psychiatrist and the dermatologist and the [PCP] talking to each other and looking at recent studies-whether the [treatment] would be detrimental because of my [condition].”
Trust	10 (+)	Feeling that the provider is trustworthy; that they understand based on personal history.	(+) “Well, I guess it’s a confidence in her from my experience over the last 10 years.”
	2 (−)	Feeling that the primary care provider is not trustworthy.	(−) “He said no, I’m not gonna do that, and I didn’t go back to him because I felt dismissed.”
Choices, shared decision-making	10	Treatment options, discussion of choices.	“She wasn’t pushing me to do anything at a particular date until she heard my feeling on it, first.”
Tailored communication/listening	9	Patient/provider communication is tailored to individual context; feels that the provider listens.	“We have that conversation. And they would clear up what I heard, or what I read, or they would say, ‘Yeah. You are right. We’re gonna order that for you.’”
Communication quality	7	Provider is respectful in their interactions.	“They’re very considerate and thoughtful of us.”

The experience of engagement in healthcare.

Defining the experience of engagement in health care emerged from the interviews as: being proactive, being involved in goals-based treatment discussions, adherence to the plan of care, and self-triaging when to seek care. Participants talked about being proactive in seeking treatment and care from their primary care practice when needed (16/20). One patient (60, woman), when describing being proactive in their care stated,

“Say for instance I hear on the TV or read an article that says, “Oh, at this age you should be checked out for X, Y, Z.” And I was like, “Oh, we’ve never had that conversation. I’ll have to talk to the doctor when I go.” And talk about it and we have that conversation.”

Feeling engaged in goals-based treatment discussions also was commonly noted as part of being engaged in their own or their family members’ healthcare (13/20). One patient (67, woman) described that they want to lose weight. The patient shared,

“I’ve had open discussions with my doctor [asking] are there medications to help me improve my metabolism? We’ve had a discussion – what would be detrimental–taking medicine for my health…different diets…and [they referred] me to a weight loss program so that I could achieve my goal.”

Being adherent to their plan of care and taking medications was described by 9 out of 20 participants. A 74-year-old woman who was also a spousal caregiver stated very simply, “I follow what’s been asked of me.” About 40% (8/20) of the participants talked about self-triaging their health concerns before determining if they needed a primary care practice “sick” appointment or should go to an urgent care or emergency department. A 61-year-old man with multiple chronic conditions stated, “With my health conditions and my health history …I can’t let it go. I can’t wait until it’s ready to go in the hospital. So, when I see symptoms, I’ve gotta say, ‘Hey, I need to be checked.’”

The importance of patient/provider interactions.

Almost all participants talked about the importance of the relationship and interactions with their PCP as influencing their experience with healthcare engagement (18/20). Several subthemes emerged in this area including: care was provided in a holistic way, trust in the provider, shared decision-making, the importance of tailored communication, and quality of communication. The subtheme of care being provided in a holistic way (13/20) emerged as a generalized feeling that their PCP takes all their health issues and needs into consideration. One patient (70, woman) stated, “I think what’s important to me is not looking at the reason I’m coming, but then looking at what my … other health issues are and taking those into consideration.” While another patient (83, man) described

“She is very thorough. [If] she refers me to a specialist, I will ask that person to send her a report, and I can bet she will read the report thoroughly… If she has any questions, she will call that doctor and she will also do some investigative research on her own”.

Fifty percent of participants (10/20) described feelings of trust in their PCP based on number of years together or qualities of the physician. One caregiver (63, woman) who cared for her mother until her death stated, “…my mother had complete and utter confidence in the [primary] care team, so she would always move forward with whatever they recommended.” Another patient described the important qualities of their PCP that allowed for trust to be present “Dr. Y is always empathetic, always open, always listening and asking questions, which is really important.” Similarly, half of the participants described being given choices and participating in shared decision making as an important element in the relationship with their PCP (10/20). One patient (81, woman) described that she had recently moved to a retirement community and was feeling overwhelmed. She stated,

“I had been totally involved in this whole procedure [plan] by Dr. Z. She explained everything to me perfectly and in great detail. When I explained why I thought it might be better to wait a little bit, maybe a couple of months until I got myself settled down and felt nice and calm about my living space and everything, she agreed with that…it totally involved me.”

Two additional patients (2/20) described past experiences with PCPs that lead to distrust. One patient (67, woman) described losing trust in a PCP because of having her request for pain medication dismissed post-surgery,

“He [past provider] said no, I’m not gonna do that, and I didn’t go back to him because I felt dismissed. That kind of dismissiveness may have been what doctors were entitled to do in the old days but no more.”

Some participants discussed the importance of tailored communication and the quality of communication with their PCP (13/20). One participant (58, woman) described that her PCP used different modalities to communicate how her heart is now working. The quality of the communication between the provider and participant (7/20) was described by one patient/caregiver (74, woman) as, “We talk to Dr. C about everything. Because he’s receptive, we don’t leave anything on the table.”

Discussion

We conducted a study to explore the experiences of PFAC members’ primary care. The results of this study indicate that the experience of patients and family caregivers with their providers is a strong driver of patient engagement in their healthcare. Patients valued person-centered care delivery, including holistic care, feeling heard, and participating in guiding their own care. The importance of trust in the relationship between patients and PCPs as well as quality communication continues what other researchers have found with specific patient groups such as those with depression or specific chronic illnesses (Asan et al., 2021; Coats et al., 2018). Below we lay out the implications for patients and providers in the care process, and primary care delivery in the age of COVID-19.

In this study, patients and family caregivers defined the experience of engagement in their care (or that of a family member) and the importance of patient-provider interactions – shared decision making, trust, and communication were key elements in engagement in healthcare. Patients’ and family caregivers’ knowledge about their illness, ability to ask questions, understanding of when to seek care, and active participation in their wellness guide their health and life goals, and can be supported by health care providers through person-centered care. While the participants in this study were largely positive when describing their experience with their PCPs, they continue to want the same things as patients from almost 20 years ago: partnership with their provider, communication, and time (Stone, 2003). Much like in the inpatient setting, patients and family caregivers desire for person-centered care was expressed as wanting to know they can access providers quickly and efficiently, feel engaged in their care, and have clear communication with their PCPs that can empower patients’ decision making (Nepal et al., 2020). These important subthemes should be included in patient experience assessments and included in primary care practice reimbursement incentive models.

Though the data for this study were collected prior to the COVID-19 pandemic, we know that the landscape of primary care delivery has dramatically changed for patients of all ages. Due to changes in insurance reimbursement rules, there has been a dramatic increase in the use of telemedicine as an alternative to in person visits. However, some populations have encountered barriers to telemedicine use, including older adults who may be unfamiliar with the needed technology and those with lower income who may not have access to technology (Nouri et al., 2020). Because of these barriers, there has been an overall cumulative reduction in primary care visits since the start of the pandemic (Mehrotra et al., Feb. 2021). It is highly likely that telemedicine visits will continue to play a significant role in health care delivery, especially in the short term and in populations that are medically underserved (e.g., rural populations). This has substantial implications for the future of primary care, where we see from our results that a prime driver for engagement is the experience with providers. Monitoring the person-centered care experience for patients, including digital literacy and access to digital resources for older patients as well as evaluating their experience with telemedicine will be essential (Nouri et al., 2020).

Implications For Clinical Practice

The CPC+ initiative encouraged practices to engage patients and caregivers in care delivery by using their experience and perspectives to improve practice processes and inform engaged, person-centered care. CPC+ had three payment elements, including a “performance based incentive payment” which was dependent on assessment of patient experience, resource utilization and clinical quality measures (Centers for Medicare and Medicaid Services, 2022). In a recent annual report of the CPC+ initiative, while 98% of practices collect feedback from patients and family members via their PFAC, only 46% report consistently using that information to guide practice improvements (Peikes et al., 2021). The independent evaluation of the implementation of CPC+ overall and at each organization revealed a 33% increase in non-physician providers – especially nurse practitioners – over the five year program, which supports the added value of increasing the nurse provider presence in the primary care setting (Swankoski et al., 2022). Nurse care managers and nurse navigators played an increasing role in the delivery of longitudinal care management services over the course of the CPC+ initiative (Swankoski et al., 2022). The results from the final two years of the CPC+ initiative (2020–2021) did not yield significant changes in patient experience; however, changing the primary care practice culture of care delivery and engagement of patients and family caregivers to create a person-centered care environment takes time (Peikes et al., 2021; Swankoski et al., 2022). Furthermore, these results must be interpreted within the context of the substantial disruption to primary care delivery due to the COVID-19 pandemic during this timeframe. In a recent study examining the nurse practitioner role in specialist clinics it was noted that specialized nurse practitioners’ quality of care was comparable to physicians and exceeded patient satisfaction ratings compared to physicians (Carranza et al., 2021). More research on the experience of patients with nurses in primary care settings are needed, specifically how different care roles and models (e.g., medicine, nursing, interprofessional teams) promote a person-centered approach with patients and empower patient engagement.

Limitations.

It should be noted as a limitation that the PFAC members interviewed are not fully representative of the patient population seen at these practices. Data on education level and why they chose to join the PFAC were not asked. There is some literature to support that PFAC members tend to be selected or nominated by staff at the practices which could lead to more positive statements about engagement by PFAC members (Oldfield et al., 2019). However, many of the individuals interviewed were able to provide both positive and negative experiences which shaped their experience.

Conclusion

These findings continue to echo patient experiences in primary care from almost two decades ago, which highlights how little has changed over that long time (Stone, 2003). Primary care practices have the opportunity to improve the patient experience by taking a person-centered, patient empowerment approach to care delivery. We recommend that future patient experience assessment must include person-centered questions focused on shared decision making, trust, and patient/provider communication and explicitly examine the impact of provider role in this setting. In addition, further research on the extent to which primary care practices use PFAC recommendations to guide person-centered practice improvements is necessary.