Patient-Centered Care: A Qualitative Analysis of Patient and Caregiver Experiences in a Hospital at Home Program

Abstract

This descriptive qualitative study aimed to address a gap in the literature by exploring the experiences of Hospital at Home (HaH) patients and caregivers. HaH programs, which deliver hospital-level care to patients in their homes, are increasingly popular outside the United States. Yet, there is less emphasis on understanding the experiences of patients and caregivers while actively receiving hospital-level care in the home and how their insights can enhance care delivery. A purposeful sample of 12 patients and five caregivers participated in semistructured interviews during the acute care stage and 30 days after their discharge from hospital-level care in the home. Thematic analysis revealed three main themes: (1) patient-centered communication and education, (2) differences in medical care at home, and (3) the impact of technology on the overall experience. These themes provide valuable insights into the factors that patients and caregivers believe positively and negatively influence their experiences within the HaH program. Moreover, the themes highlight aspects of the HaH model that are important to patients/caregivers and those that can be improved.

Clinical Trials.gov

Number: NCT05952999

Analysis of the Virtual Acute Care at Home Experience (HaH)

URL: https://www.clinicaltrials.gov/search?term = NCT05952999

Introduction

Hospital at home (HaH) offers an alternative to traditional inpatient acute care by providing hospital-level care at home using a mix of technology and home-based care strategies. While these programs have existed for many years,^1,2 there was an increase in the utilization of HaH services in the United States after the Acute Hospital Care at Home waiver was introduced, which allowed Medicare fee-for-service payments for HaH care. ³ From November 2020 to October 2024, more than 31 000 patients received care through HaH programs. ⁴

Most research on HaH focuses on the effectiveness of this care delivery model, including its impact on reducing readmissions, mortality rates, and healthcare costs.^5,6,7 After the first World HaH Conference in 2019, it was recognized that defining the factors that influence the experiences of patients and caregivers was a crucial area for further analysis.^8,9 Subsequently, several studies have explored the experiences of those using HaH, reporting that patients and caregivers thought care was better at home,^10,11 patients felt like they received more attention from nurses, ¹² and that some patients and caregivers have concerns about remote monitoring and safety. ¹³ However, few researchers have conducted interviews during the HaH acute “inpatient” period, which could more accurately capture their lived experience in HaH.

Methods

This descriptive qualitative study aimed to explore patient and caregiver experiences in a HaH program by interviewing them during the HaH admission and post-discharge.

Setting

In August 2022, OSF HealthCare began offering HaH care at an academic Level 1 trauma center in Peoria, Illinois. Patients can enter the HaH program in two different ways, which are referred to as either a hospital substitution or a reduced length of stay. First, those presenting to the emergency room with serious illnesses like heart failure, pneumonia, cellulitis, and postsurgical needs who required hospitalization and met specific inpatient criteria were asked to consider HaH (hospital substitution). Patients who meet the criteria enter HaH (reduced length of stay) from an inpatient hospital bed in specific units (eg, medical-surgical, intensive care step-down unit). Regardless of how patients enter HaH, upon admission and ambulance transfer back home, patients receive a tablet, an emergency response button, Bluetooth-enabled vital monitoring devices, and essential equipment. A virtual command center staffed by nurses and physicians provides support 24/7 to patients. Nurses also conduct twice-daily in-person visits and coordinate care with the medical team, including pharmacists.

Participant Recruitment

Patients received an information sheet about the research study in their admission packet and were later contacted by HaH staff to gauge interest on their first full hospital day. Recruitment video calls with researchers were arranged via the charge nurse and placed on the patient's electronic schedule. Researchers obtained informed consent from patients and caregivers separately at the start of the interviews. All HaH patients and their caregivers were eligible to participate in the study.

Data Collection

The research team, consisting of experienced qualitative researchers (MD, CK, MC), developed a semistructured interview guide based on a literature review and programmatic needs (Supplementary Table 1). Two interviews were conducted with patients and their self-identified caregivers via the communication platform (video supported) and/or the phone for the follow-up interview between January and August 2024. Interviews were conducted separately by MD and CK for each patient/caregiver dyad during hospitalization and around 31 days post-discharge, each lasting about 20 min.

Analysis

The interviews were recorded, transcribed verbatim, and uploaded to NVivo 14, a qualitative data analysis program. The transcripts were analyzed using reflective thematic analysis, a method of identifying patterns (themes) in qualitative data that emphasizes the role of researcher reflexivity as developed by Braun and Clarke. ¹⁴ To improve reliability, coding and theme development was initially conducted by MD and MR, followed by a review from CK and MC, with team meetings until a consensus/finalization was reached.

Results

Twelve patients (P) and five caregivers (C) participated in the first semistructured interviews (Table 1). All patients were older, white, predominately insured by Medicare, and female. Two patients and one caregiver did not complete the second interview. Analysis of the interviews identified three major themes (Table 2).

Table 1.

Descriptive Characteristics of Hospital at Home (HaH) Population (N = 360).

	Study Participants (n = 12)		Hospital at Home Programa (n = 360)
Characteristics	Number	Percent	Number	Percent
Age
Unknown			4	0.01
19­–35			4	0.01
36–55			14	4
56–65			24	6.8
>65			316	87.3
66–70	4	33
71–80	2	17
81–90	6	50
Sex
Male	3	25	196	54.4
Female	8	75	164	45.6
Cohabitation
Yes	7	58
No	5	42
Admitting diagnosis
Acute hypoxia	3	25
COPD exacerbation	3	25
CHF exacerbation	2	8
COVID-19	1	8
Cellulitis	1	8
Pancreatitis	1	8
Pulmonary embolism	1	8
HaH program type
Reduced LOSb	11	92
Hospital substitutionc	1	8
Insurance
Medicare	11	92
Private	1	8
Race
White	12	100	327	90.8
African American			19	5.2
Hispanic/Latino			7	2
Other			7	2

Note. ^aHospital at Home program population represents fiscal year 2024 (October 2023 through September 2024). Percent does not = 100% due to missing data and rounding. ^bPatients in the reduced length of stay (LOS) program are transferred from another unit in the hospital to the HaH program. ^cPatients in the hospital substitution program enter directly from the emergency department.

Abbreviations: COPD, chronic obstructive pulmonary disease; CHF, congestive heart failure; LOS, length of stay.

Table 2.

List of Themes and Codes.

Themes	Codes	Exemplar quotes
Patient-focused communication and education
	Good provider communication	C7: “When you talk to the doctor, he's right there and able to explain in more…They really explain things and you can ask them whatever and they can explain it so you can understand it [in lay language] and so she can understand too.”
	Respect patient preferences	P6: “[It] was on Sunday, the football games were on, and I was supposed to take the medicine at 9:00 and they called me – they told me that they called me close to 9:00. Well, he called a little bit before that, which was fine. He asked me if the ball game was over. I said, “No, but it's almost over,” and he said, “Why don’t you call me when it's over?” So, I did. I called him when it was over.”
	Takes time	C7: “They’re really willing to sit back and explain and talk to you about anything. And they’re not rushed. They don’t rush through things. They’re taking the time to talk to you and explain things if you need to or ask if you needed anything, they explain it.”
	Friendly/caring	P3: “I like their professionalism. I like their personality. They're friendly.”
	Attentive	C7: “When we were in the hospital, there were times when there was like all day and there was hardly anyone that would come in. Sometimes you wouldn’t see anybody come in, where here there's constant somebody. I think she's actually getting better care here than when she was in the hospital or more, attention-wise.”
	Importance of information	P4: “I thought it was very interesting that the pharmacist told and went through all of my drugs with me because never had I been in the hospital where anybody from pharmacy have ever gone over any medication with me whatsoever.”
Medical care is different at home
	Able to sleep	P11: “Sleeping in your own bed, that makes the biggest difference sometimes. Your own bed is easier to get in and out of than a hospital bed.”
	Able to care for pet(s)	P9: “Well, I knew that I told the nurse or the doctor that came in that first time, I said, I really need to be home. I have a very spoiled, 18-pound four-legged baby, and I really needed to be here to take care of her.”
	More privacy	P11: “I could watch TV if I wanted without bothering other people.”
	Hospitals are for really sick people	C4: “I know it's not meant for every scenario why you would be in the hospital, but for somebody that was just coughing there and getting medications and being monitored, I thought it was great to do it at home and in the comfort of my home.”
	Able to use the bathroom by yourself	P11: “I was able to go - the main thing was not being confined to the bed with a buzzer if you have to go to the bathroom. To me, that was the big thing. Being that I could take care of that myself…”
	Have to adapt to HaH routine	P5: “I have to set my alarm earlier than normal. [Laughter] Normally, my wife and I, we don’t get up until 10:00-10:30.”
	More attention	C1: “I’m not saying the ones [staff] at the hospital weren’t but they were very busy there I noticed. There were a couple of times that I had to hold. But I knew that they were busy.”
	Home is more comfortable	P9: “I mean I’ve been treated really well in the hospital, I have no complaints, but I still would rather be at home. At home is very comfortable, so yes, that's just my preference.”
	Easier for caregivers to provide support	C4: “Oh, it was nice. I mean, it was nice having her home because, for one thing, I didn’t have to – back then, the roads were really slick.”
	Role of caregiver	C1: “So, I heat up her meals. She's pretty capable of getting back and forth to the restroom on her own. She does have a long oxygen cord now. Sometimes, I’ll help with that and just make sure it doesn’t get tangled and things like that. Get her renal score if she needs water. You know, just basically do the footwork.”
	Prepared for discharge	P3: “I like the follow-up because you get out of the hospital and a little worried that are you well enough to be out of the hospital and this is like a bridge that connects you back to being cared for.”
Impact of technology on HaH experience
	Feelings about RPM	P4: “I felt that it was fine because there was somebody there with me even though they weren’t physically there with me.”
	Ease of communication	P1: “The technologies have been great. I mean, I love this tablet and the phone being right here, knowing that if I need anybody, they’re there for me.”
	Technology education	P12: “They set up the equipment, got me comfortable, checked my oxygen, made sure that it was on two, and just showed me how I’m going to use it.”
	Impact on home life	P10: “It is full [table] of all these bottles or bags of medicines and equipment, and I’m just like, there's no place to eat a meal. This is not a room. My dining room isn’t even a room I clear for him to go into. So…that bothers me to know that that's happening.”
	Challenges with technology	P4: “Then it's like, “This thing is not working.” It's not lit up anymore because it lights up and gets blue here in the middle. The message on my phone, because I did have my phone with me at that moment in time, it did say that I had a bad reading. So I’m like, “Did I hit it off when I’m changing my clothes?” Maybe I pushed it or something. So I pushed it a few times. Then I pushed it three or four times and then it turned blue again. So it worked, but I never could get it to read. So I’m like, “I give up. I can’t figure it out.” So when I called them, it was around midnight or so, when I called them, when I was in pain, and coming closer to the iPad, it just automatically started reconnecting and reworking. So when I did that, it started reworking.”

Abbreviations: P, patient; C, caregiver; RPM, remote patient monitoring.

Patient-Focused Communication and Education

Patients and caregivers often highlighted important aspects of patient-centered communication with HaH providers and support staff that focused on improving their HaH experiences. These aspects included being collaborative, responsive, and empathetic. For instance, both groups described the HaH providers and staff as compassionate, friendly, and respectful of patient preferences in the care they provided. As one caregiver explained, “I think the staff was very good at explaining everything: how the process works, the level of care, and why it was needed. I mean, it's open dialogue” (C:2). A patient commented, “they talk to me [via the video chat] just like they would have if I was there with them in the room” (P:5).

Nevertheless, a few patients still had questions about their prescribed medications (eg, use and reason), highlighting the importance of education. There was one instance where a patient and caregiver wanted additional details about the treatment plan from a specialist physician. Patients reported that questions were answered promptly, the program was explained clearly, and providers took time, unlike the rushed atmosphere they experienced in other hospital settings. One caregiver explained that she felt her mom was getting “better care here than when she was in the hospital… attention-wise” (C:7). The patients and caregivers interviewed mentioned that the communication and education they received were “excellent” or “good” because care was personalized, slower, and they believed that staff had more time for them.

Medical Care is Different at Home

Patients and caregivers often compared the care received in the HaH program to that in the hospital. Overall, patients appreciated the privacy and autonomy of being at home, especially those with previous experience using semiprivate hospital rooms. Patients frequently mentioned the importance of using the bathroom independently and “not being confined to the bed with a buzzer if you have to go to the bathroom” (P:12). In addition, the ability to sleep in one's own bed was seen as important. Many found their home environment more comfortable and conducive to healing, noting they “weren't sick enough” to remain in the hospital.

Patients also found that HaH made life easier for their families by eliminating the need to drive to the hospital, particularly during winter months. For those patients living alone, HaH reduced stressors around pet care and the guilt of leaving pets home alone. As one patient explained, “My main thing, I wanted to be home. I wanted to be in my own secure comfort zone. I wanted to be home with my dog. I just wanted to get settled in. That was my goal” (P:10).

Patients appreciated receiving more personal attention from medical staff, who appeared less stressed than those in other units (patients’ perspective). However, it was noted that home equipment took up space, requiring them to rearrange their home during setup, although HaH staff assisted with this. While being home was preferable to the hospital environment, patients had to adapt and could not fully return to their preadmission routines like sleeping “past 10 am” or leaving the home to go on errands. Overall, patients felt the HaH program helped ease their transition (and discharge) from hospital to home.

Impact of Technology on Experience

Easy-to-use technology, such as remote monitoring devices and video communication, were described positively. “It was easy…I was eating breakfast, then it [the tablet] showed up that there was an incoming call,” (P:6). However, that same tablet could be difficult to use, for certain tasks (eg, reading the daily schedule) due to poor eyesight or mobility. One patient explained, “I have trouble seeing, I have to use a magnifying glass” (P:8). Another with a chronic mobility disorder relied entirely on his daughter to help him use the tablet to communicate with staff. Instances of technology malfunctioning, like a nonfunctional scale or failed Bluetooth connectivity, were deemed inconvenient, but uncommon.

Caregivers and patients emphasized the importance of being properly educated about the technology and the need for time devoted to their education. As one caregiver explained, “I feel at that point [upon admission], we were not educated well enough for them to just bring it [oxygen and remote patient monitoring equipment] in…That's been the only problem that I’ve had is, he [HaH staff] didn’t give really good instructions on it (C:1). However, most patients mentioned that they received all the education they needed, “they set up the equipment, got me comfortable…and just showed me how I’m going to use it” (P:11). Overall, technology significantly improved comfort for patients and caregivers at home. Patients appreciated the ease of communication with staff, noting they could connect instantly by “pushing a button.” Overall, patients and caregivers felt that remote monitoring and straightforward communication provided a sense of constant support, making them feel cared for at all times.

Discussion

The themes and information gleaned from patients and their families at a midwestern hospital support earlier findings of other researchers engaged in this work^9,13,14 within the United States and elsewhere. The desire for patient-centric care is evident within the three themes and demonstrates the patients’ desire for autonomy and self-management. Patients embraced the security of support through technology platforms and face-to-face visits, which given the program's post-COVID pandemic implementation, the pandemic may be a contributing factor. Patients who selected this option for acute care were open to the experience despite little awareness of its existence, but as other studies have noted, they thought that care could be better at home. ¹⁰ While concerns about safety are mixed,^11,12,13 patients in our study did not report any concerns. Our study also suggests that patient selection of the HaH and experience is shaped by complex factors beyond the care experience, such as the ability to care for pets or the impact of weather on caregivers. Such factors are often not captured in standardized patient experience surveys focusing on care experiences.

As could be expected, both patients and caregivers described their experiences with the HaH program compared to their current or previous admissions to traditional brick-and-mortar hospitals. Both groups emphasized several factors that negatively affected their hospital experiences, such as lack of privacy, limited autonomy, poor provider communication, and the discharge process. These problems are well-documented in the literature^15,16,17 and are not limited to only our hospital environment. Our study revealed that delivering patient-centered care in a home setting enhances the patient care experience by enabling patients to receive care in a location that they prefer, providing more time to talk with nurses, providers, and pharmacists. It also has the potential to reduce caregiver stress by involving them in the caring process and removing the need for travel back and forth to the hospital, as reported elsewhere. ¹³ These factors highlight how HaH can potentially alleviate some of the long-standing concerns of patients and caregivers about hospital admissions, which can be challenging for health systems to resolve. As more health systems implement and scale HaH across their system, it is important to ensure that the technology is easy to use and that staff invest the time to educate patients and caregivers.

Limitations

While this study offers new insights into patient and caregiver experiences, there are limitations. Given its small sample of predominantly White, insured, older patients (>60 years) from one hospital within a system, other patients and those who declined HaH may be significantly different from those who participated. However, similar demographics have been reported in other recent acute HaH studies in the United States.^4,18 Additionally, selection techniques for participants and willingness/ability to participate in the interviews impact the generalizability of the findings. Therefore, these patient and caregiver experiences might not be indicative of other groups or those with other medical conditions.

Conclusions

Patients and caregivers who received HaH care generally report positive experiences, which aligns with earlier research findings.^9,10,13 Our study revealed that delivering patient-centered care in a home setting enhances the patient care experience, addressing well-documented complaints associated with hospital care and other lesser-known concerns. These findings indicate that HaH programs could potentially improve patient care experiences. Further research is warranted.