Provider perspectives on integrating family caregivers into patient care encounters

Abstract

Objective

To examine and compare health care provider perceptions for integrating family caregivers into patient encounters and other processes of care by medical specialty.

Data Sources/Setting

Data were from 19 interviews conducted in 2018, 10 with primary care or palliative care providers and nine with proceduralists or interventionists in practices located in Minnesota, Florida, and Arizona.

Study Design

This was a qualitative study using data collected from one‐on‐one, semi‐structured interviews with physicians.

Data Collection

By using purposeful “maximum variation” sampling to capture differences between primary and palliative care providers and proceduralists/interventionists, data were collected, reviewed, coded, and then analyzed using inductive content analysis with a constant comparison approach.

Primary Findings

Primary care providers described a lack of organizational and institutional resources to support caregivers. Accordingly, they were compelled to curb caregiver engagement in order to meet patients' clinical care needs within the time and workflow demands in encounters. Proceduralists and interventionists described the need to assess caregivers for suitability to provide care during intense periods of treatment. They reported having access to more formal organizational resources for supporting caregivers. Overall, providers described a paradox, where caregivers are seen as contributing value to patient encounters until they need training, education, or support to provide care, at which point they become burdensome and require more time and resources than are typically available.

Conclusions

Results highlight how organizational constraints inhibit caregiver engagement in patient encounters and influence provider attitudes about engaging caregivers and assessing their unmet needs. Findings also provide insights into challenges across practice types for implementing state and federal laws that promote caregiver engagement.

What is known on this topic

• Health care systems and providers acknowledge the vital role caregivers play in patient care.

• Policy makers and third‐party payers are helping to formalize the family caregiver's contribution to care quality at state and federal levels.

• Research to date that has examined caregiver inclusion in patient care has been primarily focused on primary care practices.

What this study adds

• Primary care providers question the ethics of engaging caregivers without adequate resources and referral processes to address their needs.

• Proceduralists and interventionists perceive a need to assess the suitability of caregivers to provide nursing tasks, medication management, and monitoring side effects or new symptoms, but stop short at actively assessing caregiver well‐being.

• To realize the intended benefits for patient and caregiver health outcomes from state and federal laws to promote caregiver engagement, organizational changes in the design of encounters, such as time, workflow, and reimbursement, will need to be addressed.

1. INTRODUCTION

Patient‐centered care is characterized by a partnership between patients and providers, where patient needs, values, and preferences are considered and integrated into health care delivery processes. ¹ , ² , ³ , ⁴ Family caregivers (i.e., broadly defined as family members or friends who provide direct care or instrumental and emotional support to another adult) play critical roles in this partnership, too, as they often share in care responsibilities, encourage adherence to plans, promote healthy behaviors, and help monitor safety and side effects that are necessary to achieve patients' optimal health outcomes. ⁵ , ⁶ Research and clinical attention to improve care delivery and outcomes, however, has been fixed predominately on partnerships between patient and provider, with far less attention paid to caregivers' roles in health care delivery. Until recently, the caregiver's role in patient health care has had a limited view of inclusion, with a focus on caregivers' presence in the encounter. ⁷ , ⁸ , ⁹ Recent studies, however, have examined the implications for greater inclusion of caregivers as full partners in patient care and health care encounters. ¹⁰ , ¹¹ , ¹² , ¹³ , ¹⁴

Prospects for greater inclusion of caregivers in health care encounters have been buoyed recently by state policies and recommendations from influential advocacy organizations ¹⁴ , ¹⁵ , ¹⁶ , ¹⁷ to encourage and systemize caregiver engagement in order to improve patient outcomes. The most prominent policy is the Caregiver Advise, Record, Enable (CARE) Act, which became law in 40 states within 4 years. The CARE Act requires hospitals to ask patients to identify a caregiver at admission, document the designated caregiver in the electronic medical record, notify them of discharge, and review discharge instructions with them. ¹⁸ The policy has broken ground by formalizing the caregiver's role and presence in the medical record, procedures, which heretofore had been only informally used in hospitals. ¹⁹

In order for the CARE Act to optimize changes in culture in which caregivers are recognized as partners in caring for patients, it is critical to identify potential barriers faced by health care systems that could impede its careful and thorough implementation in hospitals and expansion of routine engagement into outpatient settings. With a notable dearth of research examining providers' perceptions on integrating caregivers into clinical care, it is critical to understand provider insights on the impact of such policies on clinical practice and their expectations for outcomes if standards for inclusion of designated caregivers were to be widely adopted.

Of the research that does examine caregiver inclusion in patient care, the attention, understandably, has been on primary care practices and nonprocedural specialties such as palliative care. ¹² , ¹⁶ Relationships between primary and palliative care providers and their patients and caregivers are often characterized by history, rapport, and trust. ²⁰ , ²¹ , ²² Providers in primary care often manage chronic conditions that require ongoing surveillance of behaviors, medication, and treatment side effects at home ²² and palliative care providers help families consider goals of care and manage symptoms, often at critical times when curative therapies have been exhausted. Lagging behind is research to understand if the pragmatic realities of systematically integrating caregivers into specialty care practices are different than in primary care. In specialty care, for example, caregiver engagement in patient care may be short‐term, yet also intense and critical for postprocedure care, pain control, and acute symptom management. If, indeed, medical specialties differ in the intensity, frequency, content, and quality of engagement with caregivers, interventions to optimize caregiver inclusion within organizations may need to be tailored differently.

This qualitative study was developed to inform a larger study aimed at formalizing routine caregiver needs assessments into clinical care. We sought out primary care/nonproceduralist providers and interventionist/proceduralists in specialty medical care (henceforth called interventionists) to understand their perceptions about caregiver contributions in clinical encounters and caregivers' role in patient care. We also inquired about the feasibility and acceptability of formal assessments of caregivers' unmet needs and well‐being during patient encounters. We anticipate that our findings can contribute to discussions about improving health care quality and outcomes by shifting models of care from patient‐centered to relationship‐centered, care where not only is the patient‐provider relationship considered, but also the caregiver‐provider relationship and relationships among providers coordinating care for patients and caregivers. ⁵ Findings can also provide insights into potential challenges that multispecialty practices may face if guidelines for inclusive care are adopted without considering distinct practice needs.

2. METHODS

2.1. Study design

From mid‐June to early October 2018, we conducted 19 interviews with physicians either in person or by phone. The semi‐structured interview guide included broad questions about communicating with patients and caregivers during clinic encounters, views on the caregivers' role in an encounter, ideas about structured (e.g., standardized assessments), and communication strategies used to integrate caregivers into patient care visits. Data were analyzed using inductive content analysis. ⁹ Data were coded, grouped into common themes, and then organized into a conceptual map of the findings (see Figure 1). This study was approved as a minimal risk by the Institutional Review Board. Approved oral consent was obtained from all study participants.

FIGURE 1.

Themes on family caregiver engagement in patient care by organizational levels [Color figure can be viewed at wileyonlinelibrary.com]

2.2. Source of participants

We used purposeful “maximum variation” sampling to capture differences between primary and palliative care and specialty care providers. ⁹ Providers practiced in one health system, with hospital and clinic sites across Florida, Arizona, and Minnesota. We chose practices that required intense relationships with patients (e.g., transplant practice) and practices with less intense but potentially long‐term monitoring (e.g., heart rhythm services) since these are practices where caregivers would most likely accompany a patient. Once we identified staff directories from primary and palliative care and these specialty practices, we identified providers within those practices known to have interests in clinical practice improvement. We categorized providers into primary care and palliative care (i.e., nonprocedural providers) and specialists (e.g., surgery, intervention cardiology, hematology/oncology) who perform procedures or are responsible for medical interventions (i.e., interventionists/proceduralists). Potential participants were contacted by a physician on the study team (RH) via email with the study purpose, consent script, and request to participate. If no response to the initial email was received, one additional follow‐up email was sent. A study coordinator contacted interested providers to schedule interviews with an experienced Ph.D. qualitative analyst (KS) who had not previously worked with any of the providers. Recruitment continued until saturation of hypothesized constructs was attained.

2.3. Source of data

The semi‐structured interview guide was developed by the study team based on previous research and literature on models of integrating caregivers into patient care. ²⁰ , ²³ , ²⁴ After recruitment, the qualitative analyst met with participants. As new knowledge emerged, the study guide was refined for subsequent interviews. The interviewer began the interview by restating the study's purpose and then collecting information to understand the provider's clinical practice, such as the population of patients cared for and the proportion of visits that included caregivers. The final interview guide included perceptions of the role of caregivers in the encounter, caregiver engagement in care and the encounter, and what information would be helpful for the provider to know about the caregiver accompanying their patients. Interviews were recorded, and the completed audio recordings were transcribed verbatim and stored on a secure server for analysis in Nvivo. ²⁵

2.4. Data analytic approach

The research team used three‐phased thematic content analysis. ²⁶ First, three team members (J.G., R.H., and K.S.) independently read each interview multiple times to become immersed in the data and developed an initial set of codes that captured key concepts from the data. Second, J.G., a health services researcher with qualitative and mixed methods expertise, and R.H., a primary care physician with training in palliative care and clinical and research expertise in relationship‐centered care, further analyzed the transcripts, expanded code development, and created definitions for codes. With the review of each subsequent transcript, codes were refined to reflect a deeper understanding of themes relevant to research questions. Coding decisions were developed by consensus and documented to provide a clear audit trail on the origin of the codes, and then the code book with definitions was finalized. J.G. and R.H. then split the set of transcripts and each applied codes line by line back to the transcripts. Third, codes were then organized into a set of themes that summarized experiences. The team further analyzed coded data by comparing the data by specialty (e.g., primary care/nonproceduralists vs. interventionist/proceduralists) and evaluating the consistency of themes.

3. RESULTS

3.1. Participants

Forty‐one providers were approached to participate, and 19 completed one‐on‐one interviews. Conflict with schedules was the primary reason for not participating. Fourteen interviews were conducted by phone and five in person. Table 1 describes where providers practiced and the distribution of primary care or nonproceduralists and interventionists/proceduralists. Clinical time demands resulted in focused but relatively short interviews, averaging 23 min (range: 9–32 min).

TABLE 1.

Interview participants by medical specialty and geographic location of medical practice

	Arizona	Florida	Minnesota	Totals
Primary care/nonproceduralists provider	4	3	3	10
Interventionists	6	2	1	9
Totals	10	5	4	19

Providers in Family Medicine and Internal Medicine estimated that at least one additional person was present in less than half of their encounters. Palliative care providers, however, estimated that nearly all encounters included at least one caregiver. Likewise, interventionists/proceduralists reported caregiver involvement in 70%–100% of visits to discuss procedures, surgeries, and follow‐up care.

Results are categorized into four main themes. The first reflects provider perceptions on the benefits of caregiver engagement. The remaining three reflect different organizational influences providers used to describe caregiver engagement: macro‐, meso‐, and micro‐levels (Figure 1). Macro‐level influences (heretofore called institutional/organizational influences) included provider descriptions of having to conform or respond to organizational limitations outside of their personal control. Meso‐level influences (heretofore called interactional influences) included descriptions of actual and ideal interactions or group experiences at the encounter level. Micro‐level (heretofore called individual influences) include provider attitudes, values, perceptions of priorities, professional roles, emotion, and motivation. A summary of themes and additional quotations by providers for each theme are in Table 2.

TABLE 2.

Summary of themes with additional quotes by medical specialty

		Primary care/nonproceduralists		Interventionists
Theme	Subtheme	Summary	Exemplary quote	Summary	Exemplary quote
Benefits		Expected family to be present only if the patient had cognitive impairment or physical disability, had a complex chronic disease, or needed assistance with independent activities of daily living.	Oftentimes the nurse will come and say, ‘Hey Dr. [name], we have got Mr. [name} here to establish care with you, and his wife is here with him.’ I'll say, ‘Oh that's interesting. I wonder why his wife came.’ It could be like a 47‐year‐old guy or something like that … and then oftentimes it's because they are not willing to share that, and then the wife will not only do you deal with the problems that the patient has but also the wife's concerns, which are part of his problems, but they may not be as important to him as they are to her. (Primary care/non‐interventionist, #5)	Expected family or caregivers to be present.	“So not only will they ask questions and fill in all the gaps that the patient‐ that the patient forgot to ask, but also the caregiver is giving you much more insight as to the whole picture.” (Interventionist, #8)
		Caregivers are invaluable resources for patient information, describing medical history, identifying, or confirming current behaviors.	… when you have a daughter come in from out of down and is a little bit of a pusher. Her mother had some acute confusion and falls and making bad decisions for herself, accepting solicitations of money over the phone from strangers, and so forth and so she [the daughter] came in and took the bull by the horns and we were able to get her in to be evaluated by the neurologist and a psychiatrist within a‐ a couple of days, and we were able to plug her in with a nutritionist, dietician because she was also losing weight and wasn't eating properly. She was living alone by herself, did not have any other advocates in the area. Ordinarily, if she did not come in, it probably would have taken several weeks ((Primary care/non‐interventionist, #3)	Caregivers are invaluable for providing nursing tasks, medication management, and monitoring side effects or new symptoms.	“… it's really hard to quantify but they [people with capable caregivers] live longer because they [caregivers] notice things, they remember. That neutropenic fever? ‘You had said that you may not have a temperature and that you might just get flushed.’ Or they know the system. They know their drugs. They are at the ERs at places that aren't here, and when they are critically ill, remember what drugs they are on and who their doctor is and how to get a hold of them and let people know that they did get chemo. But having that other person who knows you, knows your drug list, keeps a copy of it, this person just makes a critical difference.” (Interventionist, #9)
		Relationships between patients, caregivers, and primary care/nonproceduralists providers are ongoing and can be built on trust, allowing more honest discussion about when care is needed and how a caregiver can find support in their role.	“I've been taking care of a lot of these patients for over 20 years so you get familiar with the patients and the caregivers, so that makes it a lot easier finding out what the real agenda is and what the limitations are on the part of the caregiver. So, familiarity is probably the greatest asset for dealing efficiently with these folks.” (Primary care/non‐interventionist, #3)	The intensity of relationships between patients, caregivers, and interventionists vary greatly and are often dependent on the specific disease, condition, or treatment course.	I take care of hospital patients with allogeneic stem cell transplants. And people [caregivers] think, it's the 100 days that they are here, and they can figure it out, and they get the time off. But it's a lifetime change. And when caregivers are under stress, have limited issues, the relationship between the two people is not good anymore … that's when you see breakdown … That is when you are like, well if I'd known, if you had any limitations or stress issues, or if I could have proactively gotten a therapy session for the two of you, or maybe we needed more discussion with our social work and our psychiatrists and our palliative care doctors about coping mechanisms. But even with our cancer patients, it's a marathon; it's not a sprint. You're on‐ you are in this, once you get it, forever … (Interventionist, #9)
Institutional or organizational constraints	Time	Constraints on fully engaging family members due to tight scheduling of short appointments	Now when it‐ for when it's out‐of‐town children, that's a whole other kettle of fish. Then‐ then you are there for‐ then you are there for about 40 min for a 20‐min visit and an hour or more for a 40‐min visit. (Primary care/non‐interventionist, #3)	Same as primary care/non‐proceduralists	“I think that another barrier [to promoting engagement with family members during encounters] is that providers do not want to take any more time than is absolutely necessary. So, you are gonna get some pushback from providers and staff and PAs and particularly the docs because this takes time … And if it winds up slowing down the clinic at all, then it will be difficult to continue.” (Interventionist #3)
	Clinical encounter structure/workflow	Subtheme did not emerge.		Formal protocols in place	[in response to the interviewer's question, ‘is it a casual arrangement if you have got somebody who's going through a bone marrow transplant’] “… it is definitely much more formalized for [allotransplant] patients. Even our social workers, when they do their assessments, they have to have a caregiver plan in place, and there has to be a backup caregiver, all of that. It is very well‐defined. The attention to [caregiver] details is much more for transplant [patients].” (Interventionist, #5)
		Formal protocols not fully developed for assessing needs and referring caregivers to social services or local resources	“I mean you just kind of‐ you get a sense of where a person's coming from, what their situation is like, but I do not make an explicit point of detailing the caregiver, right? And, there's not a systematic approach to that, right? … What we currently do, if I have someone I'm concerned about, that's where social work gets involved. That's usually one of the most common reasons I'm calling our social worker is because of concerns about the home environment; how are they gonna provide for themselves; how can they be supported through the process.” (Primary care/non‐interventionist, #10)	Focus is on the suitability of providing care, not necessarily on assessing a caregiver's unmet needs.	“… are they mentally able to take care of the patient? Are they physically able? Are they willing to, and what are the limitations: physical and mental? So, for some, for instance, some people cannot deal with wounds. They cannot see blood; they cannot touch wounds. So, it just has to be‐ so limitations and ability of the caregiver.” (Interventionist, #1)
				Reliance on social workers and nurses to conduct assessments	If we have a patient who's being treated very intensively or they are requiring a lot of care, we do try our chaplain and our social workers to reach out to the caregivers to provide them support during that phase just so that they have someone they can vent to, which I think does help, but I mean, again, it‐ a lot of it is very personality‐driven, and so we‐ we do try to help some of those people who‐ who accept our help. (Interventionist, #5)
		“Working in” assessments or engagement into workflow	“When I think of it and when I have the‐ the opportunity to ask the caregivers how they are doing, I‐ I do that. Sometimes it's difficult in the‐ like in the context of‐ of the office visit cause they do not often want to share that they are overburdened they are making the patient feel awkward or bad.” (Primary care/non‐interventionist, #2)	Same as primary care/non‐proceduralists	“We probably wing it more than anything else. I mean you kind of go on a gut instinct” (Interventionist, #4)
Interactional experiences	Transactional communication		“I would prefer to have a caregiver functional status flag for all my patients to know how much I can rely on them, but then I do not want to know anything else about their health unless they also become my patient.” (Primary care/non‐interventionist, #7)		“… we were actually just chatting about, should we put these caregivers through like a course, ‘How to get mom to get out of the wheelchair and do her exercises,’ right? Cause if that's not your relationship with your mom, how do you change … that's a radical change in gears to someone to do that.” (Interventionist, #7)
	Challenges	Family can derail the encounter by shifting focus from the patient to personal health concerns or family conflicts	“… a lot of patients feel it's a two‐for‐one visit even though it's not officially (I: laughs) scheduled like that way. So you know, you do address their issues as succinctly as you can, ‘Now this sounds like we should spend some designated time discussing things with you at‐ at another point in time in the near future.” Otherwise, they can monopolize the patient's visit. (Primary care/non‐interventionist, #3)	Same as primary care/non‐proceduralists	“… occasionally we see it where the spouse dominates the conversations and that can make things difficult.” (Interventionist, #2)
		Multiple people in an encounter can hinder clear communication and information sharing if not managed.	“… it's one of the things that we actually teach the students is how to interact when there is more than one person in the room, when the person has a caregiver or spouse or child or somebody, how do you actually work with‐ with everybody in the room, um, and have the most out of that visit … it is in the way you run the office appointment. I mean it's my office and I'm still in charge of the visit and regardless of what the challenges are, I still should be able to run that visit despite how many people are in there cause it's still … I'm still the doctor in the room. I should be able to get what I need from whatever the situation is. If I cannot, that's‐ that's kind of on me. I do not feel like I have to be a victim in the situation where there is like, Oh there's too many people in the room. Well, it's still my office so I need to take control of it.” (Primary care/non‐interventionist, #2)	Having multiple people present complicates the encounter but benefits the full disclosure of information.	“… generally, the caregivers are there; you know, the patient wants them there. They want them to hear this information and having multiple sets of eyes and ears is helpful because no one gets all of it. Patients mis‐hear plenty of what doctors say. It happens all the time, right? They misunderstand, they need clarification, so having multiple people is helpful. And in my practice, you know with what I do, you know, with advanced metastatic disease, almost everything we see in the first meeting is repeated at the second. It takes multiple messages before it really sinks in.” (Interventionist, #4)
Provider traits/characteristics	Ethics and equity	Engagement and assessment of caregivers are ethically questionable because needed services may not be known or readily available.	“I think that that's one of the fears that people have when we‐ when we open up this so‐called can of worms. Now what do you do with that information? I'd rather not know if I cannot help the patient [or caregiver], and that's not a good thing cause I think there's always something we can do as long as we have kind of a plan in the back in the background saying, ‘if this happens, then we need to do this.’” (Primary care/non‐interventionist, #2)	Theme did not emerge
		Assessment of stress or caregiver health concerns is ethically questionable because the physician's professional duty and responsibility is to the patient, not the caregiver.	“… my primary responsibility should be to the patient that is in my office. And it's not fair to the patient who is in my office to have their doctor's attention distracted by their caregiver's own issues. That caregiver has to go to the doctor and get that [their own health issue] taken care of … And I think a caregiver is helpful insofar as they support the mission of treating the patient. But if this becomes‐ if they become a second patient in the room, that's bad.” (Primary care/non‐proceduralist, #7)	Theme did not emerge
		Assessment of stress or caregiver health concerns is ethically questionable because the caregiver may be under the care of another physician.	“So, say they [family member] fills out this form and they have all of these diseases, and I will feel like it's my responsibility to now start taking care of them … but what if they are assigned to someone else? Like if I make a recommendation, they are gonna view it as me intruding … but I try not to step on anyone's toes. So, like what would that do to the dynamic? What would that do to the relationship with the caregiver and their primary? Are they gonna stop trusting them? Like it just opens up a whole can of worms.” (Primary care/non‐interventionist, #7)	Theme did not emerge
	Personal experiences	Personal caregiving experiences can influence personal approaches for engaging caregivers.	“… if we are gonna really do more than lip service to the patient's best interests, we have to include the family's role … especially in primary care and family medicine. I went to every single breast cancer appointment with my wife. She was very capable and competent in‐ in hearing information and processing information, but the doctors or surgeons, the oncologists, everybody‐ they were very cordial to me, not just because maybe they knew I was a physician but I think genuinely because they realized that cancer sucks, and they wanted me to be as informed as my wife was about the diagnosis and options.” (Primary care/non‐interventionist, #8)	Theme did not emerge

3.2. Benefits of family participation

Providers expressed deep and meaningful commitment to their patients, and they unanimously regarded respect for the role of caregivers. Caregivers were seen as important sources of additional information that benefit the provider's medical evaluation. All providers identified benefits of having caregivers present in the health care encounter, although some primary care providers prefaced that their expectations were for caregivers to be present only if the patient had cognitive impairment or physical disability, had a complex chronic disease, or needed assistance with activities of daily living.

Both primary care/nonproceduralists and interventionists described how caregivers could be invaluable resources for patient information, describing medical history, identifying or confirming current behaviors, voicing safety concerns or symptoms, being an “extra set of ears” for crucial educational material, or providing the context or constellation of patient experiences at home. Caregivers can be advocates for patients, buffer difficult news, or describe embarrassing behaviors or situations that are uncomfortable for patients to disclose. They engage in or can be surrogates in shared decision making about treatment options, discharge planning, and advanced care planning.

In addition to providing information and absorbing new information, interventionists emphasized their dependency on caregivers to provide care at home, such as wound care or symptom control, treatment, and medication adherence, and monitoring health behaviors.

“We need someone who is going to be able to take your temperature, to call us if you're too sick. We need someone to be there to understand which foods you should and shouldn't eat … If you're too sick to walk, who will push the wheelchair if you need to.” (Interventionist, #9)

3.3. Institutional or organizational influences

Providers noted that in spite of their commitment to supporting caregivers, clinical encounters are not designed in ways that promote partnership. Formal processes to engage caregivers are rare, but when they are in place, they are typically clinical care requirements to assess caregiver suitability rather than inquiries about how to best meet caregivers' needs. Two major subthemes emerged from the data on how institutional or organizational influences affect inclusive care: time constraints and clinical encounter workflow.

3.3.1. Time

With time a valuable yet limited commodity, any digression from the patient goals during the clinical encounter to address unmet caregiver needs was felt to divert precious time away from the patient. Both primary care/nonproceduralists and interventionists discussed time constraints, stating that their fundamental duty was to focus on their patient's needs in an allotted amount of time. Primary care/nonproceduralists providers added, however, that their time is especially constrained because they need to balance the multiple complex chronic health conditions of their patients while trying to adhere to short appointment times.

“… I obviously want to help them [the caregiver]. And in the ideal world, they would have their own appointment. But when I have 15 or 30 min to deal with the 20 problems of this one person [the care recipient], to then have to do that for two people, it ends up being‐ hurting everyone because the patient is gonna get worse care because they have less attention.” (Primary care/non‐proceduralist, #7)

3.3.2. Clinical encounter structure and workflow

In related to time, providers often discussed that clinical encounters are structured with the patient in mind, not the caregiver or family unit. Electronic medical record documentation, billing, referral protocols, and clinical practice guidelines that drive much of the clinical encounter workflow are all directed at patient care. Some exceptions do exist, however. Patients pursuing transplants, for example, are required to have a caregiver present and available. Assessing caregiver suitability in transplant is seen as critical for success, and therefore, workflow structures, complete with billing codes, are part of routine care.

The more common approach, however, was for providers to work caregiver engagement into the workflow informally. Interventionists who expected short‐term help from caregivers were especially keen to determine if caregivers could provide nursing care. They made these informal assessments part of their routine workflow, even though this “work in” was not billable. They did note that once needs were identified, they had access to social workers or nurses who could conduct more formal assessments and connect with local resources, and thus, the disruption to their workflow was minimal.

Primary care/noninterventionists also discussed needing to incorporate caregiver engagement into their clinical workflow informally. They, however, noted that without billable codes for time spent on caregiver engagement, or reliable tools, such as well‐developed protocols for referring caregivers to social work or community caregiver resources, modifying their workflow to engage caregivers who did not have an obvious need was not a high priority. While palliative care noted they could involve their interdisciplinary team, primary care providers had limited resources in social work to bridge this gap.

3.4. Interactional experiences

Interactional issues within the encounter include provider descriptions of communication dynamics, decision making communication, and controlling the agenda in the encounter when caregivers were expected or present. Providers reflected on how they work with patients and caregivers to achieve the shared goal of providing the best care for the patient. They described their communication as transactional, intuitively generated, and sometimes fraught with challenges.

3.4.1. Transactional experiences

Both primary care/noninterventionists and interventionists often described interactions with caregivers as transactional exchanges. Providers wanted to be assured upfront that their patients are well cared for and caregivers are able to follow the care plans. Interactions with caregivers, therefore, were described as focused on patient needs and the caregivers' capability and willingness to assist with the provider's plan for the patient.

“I would ask them [the caregiver], Do you feel you're capable? Do you have some ability to manage this? … I can, first of all, look at the person and kind of generally tell, and then I can get some more information from the patient and by asking them [caregiver] questions …” (Primary care/non‐proceduralist, #5)

“Are you comfortable managing your partner's medications? Would you be comfortable with changing a dressing? Do you have fears about seeing a stoma or fears about dealing with one? … maybe questions about intimacy and level of comfort with their‐ their spouse's body and maybe looking after intimate functions like bathing them, things like that? … this is touching on something that we kind of take for granted when we see a patient come to an appointment with a family member or a spouse, and we assume that they're going to be available post‐op to help care for them, and there's no guarantee that they're either willing or capable of doing that. That's an assumption that we make.” (Interventionist, #2)

3.4.2. Intuitive communication

Regardless of specialty, providers noted that they often relied on emotional cues from caregivers to initiate conversations about well‐being.

“I focus mostly on the patient unless the caregiver is giving any sort of signals. They are teary‐eyed or they are sort of not quite their normal self. In that case, I will ask them … ‘How can I help you?’ or something like that, but it's mostly‐ unless there is something obvious–the main attention that I think I pay, especially in case of a newer patient‐ is for the patient.” (Interventionist, #5)

Primary care/noninterventionists also relied on observing changes in the caregiver countenance and described their advantage of having established rapport or longer‐term relationships with many caregivers.

“I've been taking care of a lot of these patients for over 20 years, so you get familiar with the patients and caregivers. That makes it a lot easier finding out what the real agenda is and what the limitations are on the part of the caregiver.” (Primary care/non‐proceduralist, #3)

3.4.3. Challenges to caregiver participation

The benefits of having caregivers present in the encounter were also tempered by concerns about engaging them in issues beyond the patient's most immediate needs or things outside of a provider's expertise to solve.

Primary care/nonproceduralist providers, especially, described a blurry tipping point when family health or social issues arise that are not always in their purview, potentially undermining the patient's agency or undermining the goal for the encounter. They discussed their unease with disruptive and counterproductive interruptions, caregivers weighing in too much or imposing personal conflicts, or conversation topics that shift attention from the patient's care toward the caregiver or other family members. They also described the need to set boundaries with caregivers as a survival strategy for meeting both patients' clinical care needs and the structural constraints in an encounter. They shared experiences of caregivers masking problems facing patients or, conversely, patients not being as forthright when caregivers are present, both of which challenge the provider's ability to assess the patient's condition or clinical treatment plan.

“I always joke that I hate spouses … a 50‐year‐old guy comes in for a physical by himself, great. A 50‐year‐old guy comes in for a physical with his wife? He's here ‘cause his wife wanted him to come and she's saying stuff that he's not saying, and it's annoying. I'm annoyed with both of them. I'm annoyed with him for not being a big boy and saying what he needs to say, and I'm annoyed at her because it's not her visit.” (Primary care/non‐proceduralist, #1)

Both primary care/nonproceduralist providers and interventionists pointed to how multiple people in an encounter crowd the room and complicate clinical conversations. Interventionists, however, saw both benefits and drawbacks to a crowded examination room. It allows multiple people to inform them of complicated information but also requires the accommodation of multiple agendas and priorities.

“That is a whole other animal when you have four or five family members; you've got a spouse and maybe three adult children and a good friend and trying to figure out who is gonna be your point‐person. They switch off. They ask questions that are sometimes conflicting … It's actually obstructing our ability to get through everything that we need to in this period of time that we have that's very finite.” (Interventionist, #9)

“It could be all five daughters or the daughter or son and then their neighbor who is a nurse‐practitioner or anyone … most of what we discuss in the clinician‐patient visit is often forgotten by the patient or not understood. And so, it's really good that we have someone there.” (Interventionist, #8)

3.5. Provider traits/characteristics

Providers revealed personal attitudes and values that influenced their engagement with caregivers.

3.5.1. Ethical and equity concerns

When primary care providers were asked about assessing caregiver needs or welfare in the encounter, they discussed the ethics of initiating an appraisal without the availability of reliable resources or referrals. They questioned what their responsibility would be if they learned a caregiver needed clinical attention, especially if the caregiver was not under the provider's care. Providing resources or care to caregivers, even when the attention would lead to more dependable patient care, was often seen as beyond their clinical authority and ethically uncertain. They also noted avoiding caregiver health issues as a professional courtesy and ethical boundaries with other providers who may be managing the caregiver's health. This theme did not emerge for interventionists.

“If you're going to ask the question, you need to have something to offer the caregiver. I think that's the biggest thing is, so now what do I do with this? And we open up a big can of worms. I think if we're going to start the process, we need to have something in place on the teams so if the caregiver is indicating caregiver distress or something, what do we do with it? We have to kind of have a plan … you have somebody on your team that you can say … please reach out to this caregiver and see what community resources they need … I'd rather not know if I can't help … and that's not a good thing cause I think there's always something we can do as long as we have kind of a plan in the background.” (Primary care/non‐proceduralist, #2)

3.5.2. Personal experience

Two providers, both practicing palliative care, shared personal experiences about being a caregiver. These personal experiences shaped their clinical interactions with caregivers, making them more empathetic about the daily responsibilities and complexities of the caregiving role and the need for clear and open communication.

“My father has been diagnosed with dementia … It's taken me eight months to figure out how I'm going to get … to these visits with him. And these people have been seeing him for complex care for a year and a half … And that was after I spent about six weeks just getting the right to talk to them, because whenever I called, they said, he hasn't signed a release. Well, he won't sign a release. He has dementia … how blind we are medically to the idea that even when patients want their caregivers involved, we just kind of go about, ‘Hey, he's in front of me. I'll talk to him … if he says he's doing okay, he's doing okay.’ It gave me a very different viewpoint.” (Primary care/non‐proceduralist, #11)

4. DISCUSSION

As family caregiving continues to play an important role in federal and state health policy, it is essential to understand to what extent providers' perceptions can help or hinder caregiver inclusion in health care delivery. In a critical review of the literature, Boucher et al. found five components of “inclusive care” or care that includes caregivers as part of the health care team: system‐level policies for inclusion; a clear definition of caregivers' role; explicit involvement of caregivers; assessment of caregivers' capacity; and mutuality in caregiver‐provider communication. ²⁷ Our findings align with this conceptualization, expanding on the organizational constraints of system‐level policies and providing insights into a similar encounter and personal challenges, all by provider type.

Our findings also highlight an important paradox in provider perceptions about caregivers: caregivers contribute great value unless they need training, education, or support, at which point they quickly become a burden and require more resources than providers have available. Providers in the United States are trained to focus on individual patient needs, but our data suggest that to practice inclusive care, novel interventions are needed that support providers' ethical obligation to address patient health and their desire to meet caregiver needs. Our results suggest interdependence of factors at the macro‐, meso‐ and micro levels, and future interventional research should consider targeting all three levels.

Similar to other studies, ¹¹ , ²⁰ , ²⁸ participants recognized the organizational constraints that inhibit caregiver engagement. For overcoming these constraints, reconfigurations of health care delivery processes, policy, and payment models, like the CARE Act that promote inclusivity in an encounter without compromising high quality patient care need to be studied. ²⁹ Promoting integrated team‐based care, which is a common palliative care model, is another potential strategy that could streamline processes and allow professionals to pool knowledge to address patient and caregiver needs. Innovations like these are also part of the national conversation for the RAISE Family Caregivers Act, which aims to create a framework for a sustainable network of support and care for older adults. ³⁰

One barrier that providers identified for engaging caregivers was the lack of accessible and reliable resources that could help caregivers assist with patients' complex health, emotional, and social needs. ³¹ A small but growing number of health care systems, including the Veteran's Health Administration and Northwell Health, have launched formal programs that provide on‐site caregiver support and resources within the health system, but outside of the clinical encounter. ²¹ , ²⁷ , ³² Developing similar programs may equip providers with resources to address caregiver needs, which in turn, could counter reticence to engage caregivers in encounters. State area agencies on aging or social care networks (e.g., www.findhelp.org) can also help providers connect caregivers to local services, such as food assistance, transportation help, legal advice, home health, and mental health counseling. It should be noted that even with adequate referral resources in place, current tools and assessments to assess caregiver needs are not designed to prioritize needs. ³³ , ³⁴ , ³⁵ , ³⁶ Additional research is needed to modify caregiver needs assessments from general inventories of unmet needs to specific and prioritized needs that could be addressed efficiently in clinical settings.

Finally, training interventions may help providers initiate engagement with caregivers and foster their inclusion on the clinical care team. Research using videotaped encounters has shown that, when present, caregivers usually have to initiate participation, and even then, information discussed centers on technical, medical information rather than on values and preferences. ¹⁰

4.1. Limitations

This study has limitations. First, we used a relatively small, nonrandom sample, and broad generalizations about all primary care/nonproceduralists and interventionists are not warranted. Research that includes a nationally representative sample of providers and assesses attitudes and beliefs about caregiver engagement could confirm our findings and inform multilevel interventions to address caregiver engagement. Our sample may best represent providers from US health care systems that do not have established caregiver resources or referral programs fully enmeshed in their care delivery systems. Second, provider perspectives on caregivers only reflect the providers' beliefs about the role of caregivers rather than their actual actions within an encounter. These limitations should not negate the significance of the themes that emerged or, for the primary care/nonproceduralist providers, the similarity with other published studies.

5. CONCLUSIONS

Our comparison by provider type provides insights into how universal guidelines for inclusive care, if developed in emerging policy initiatives and practice interventions, could impact practices with multiple specialties differently. With challenges for caregiver engagement identified at the macro‐, meso‐, and micro‐levels, we conclude that bold steps may be needed to realize the full extent of benefits for patient and caregiver health outcomes afforded by relationship‐centered care. These steps may include state and federal laws to build the infrastructure to promote caregiver engagement; organizational changes that build caregiver support systems and formalize caregiver engagement in care, such as referral protocols; and provider training to reduce ethical confusion about providing relationship‐centered care. All of these initiatives need corresponding research to evaluate the impact of these steps ¹³ and assess if more inclusive care affects meaningful patient‐ and caregiver‐reported health and health care outcomes improves quality of care, and reduces costs for health care systems and payers.

CONFLICT OF INTEREST

The authors have no conflicts to report.

Griffin JM, Riffin C, Bangerter LR, Schaepe K, Havyer RD. Provider perspectives on integrating family caregivers into patient care encounters. Health Serv Res. 2022;57(4):892‐904. doi: 10.1111/1475-6773.13932