No Place to Go: The Relationship Between Care Partner Inclusion Practices and the Hospital Environment

Observation Data Analysis

We conducted a deductive framework analysis on qualitative field notes from our direct observations to explore factors of the physical environment that influenced care partner inclusion (Gale et al., 2013). This methodology was selected due to its appropriateness for qualitative health research done by multidisciplinary research teams (Gale et al., 2013). The deductive framework approach for qualitative analysis involves using a preexisting coding scheme based on previous literature to characterize a qualitative dataset (Gale et al., 2013). In line with our observations, three team members (CS, AY, and KI) used the SEIPS-2.0 framework definition of “internal environment” to conduct initial structural coding of any excerpt about the physical environment. Underneath the parent code “internal environment,” our team designated the coded content as either an existing strength or an area of opportunity for inclusion based on team discussions. All coding was completed in NVivo 14 software (QSR International, 2018).

Interview Data Analysis

To continue identifying factors influencing care partner inclusion, we conducted a deductive/inductive content analysis of the interview data. First, two research team members (CS and SH) individually coded transcripts using structural coding for excerpts related to the internal environment, meeting weekly with each other to resolve any discrepancies in coding. After completing this, each team member was given the structurally coded excerpts from a set of interview transcripts to code. We split up our team so that at least two members coded all transcripts. Each team member identified initial categories of physical environment factors that influenced the identification, assessment, and education of ADRD care partners. We then conducted a team-based affinity diagramming process to discuss, combine, and refine our codes using Mural software (Mural, 2011). During a virtual meeting with the entire research team, each team member created sticky notes for each factor identified in the initial coding, which could all be visualized on the screen. We then used team-based consensus discussion to group similar categories and generate and refine labels for the final categories for care partner and clinician/administrator data.

Our team used several strategies to increase the rigor of this qualitative study. Through regular team meetings, we reviewed the data and discussed how our backgrounds, beliefs, and experiences could have influenced the results. For example, one team member is a nurse practitioner who provided insight into traditional hospital room layouts’ purpose, functionality, and limitations. Two team members with backgrounds in occupational therapy helped illuminate how the physical environment can facilitate and hinder desired processes for care partners and clinicians/administrators. Another team member is a human factors engineer whose focus on systems thinking has helped our team recognize the physical environment as one factor contributing to the care partner inclusion practices. Our analysis also benefited from an interdisciplinary team-based approach to integrate these perspectives. We also continued to collect data from participants until data saturation was reached.

Our analysis also benefited from an interdisciplinary team-based approach to integrate these perspectives

Spaces Dedicated to Care Partners

A learning center focused on providing health education to patients and care partners was present on one unit. A board of health-related pamphlets, including mindful aging, stress reduction, diabetes education, meditation classes, and parent–child classes, was outside the learning center for public use (Observation: 9/9/2022). A family waiting room with couches, chairs, a telephone, and a television was available (Observation: 10/21/2022). We generally saw care partners standing at the bedside or sitting on cushioned chairs in patient rooms. Care partners typically had the space to remain in patient rooms when 1–2 care team members entered, but we witnessed a care partner have to leave the room during a patient transfer to a transport bed given a tight space (Observation: 9/9/2022). We also noted efforts from the staff to make the physical environment more comfortable by playing music and dimming the unit lights (Coding Meeting 1/25/2023).

Environmental Resource Utilization

Care partner-focused spaces in this hospital included a family waiting room and a learning center. However, these spaces went largely unutilized. On one occasion, the family waiting center was marked closed, and the space was used for a meeting among hospital staff (Observation: 9/8/2022). Across observations, one individual used the family waiting room (Observation: 9/9/2022). We did not witness any care partners utilizing the learning center. Beyond spaces dedicated to care partners, we also saw an underutilization of the environment to communicate information for PLWD and their care partners. For example, we noted that all patient rooms had whiteboards, allowing care team members to communicate updates to care partners and share care partner information with the rest of the care team. However, we did not see updates or care partner information shared on any of these boards. Further, bulletin boards and shelves that could serve as areas to keep resources for PLWD and their care partners were empty (Observation: 10/21/2022).

Space for Care Partner

Space for care partners refers to areas available for care partners to comfortably remain while visiting their loved ones. This theme encompasses both space within patient rooms and areas in the larger hospital that support care partners’ presence in the hospital. Many care partners commented on the presence or lack of rooms large enough to seat them comfortably. One care partner noted the difference in room size between units: “They had a pullout, in the first room she was in there, the first night, there was no pullout bed or anything. It was just a tiny, little room on the cardiac floor. But then they put her in critical care, and there was a large pullout area where you could sleep if you wanted to sleep and a desk if you needed it. It was a big room” (CP6).

“They had a pullout, in the first room she was in there, the first night, there was no pullout bed or anything. It was just a tiny, little room on the cardiac floor. But then they put her in critical care, and there was a large pullout area where you could sleep if you wanted to sleep and a desk if you needed it. It was a big room” (CP6)

Others expressed an appreciation for newly renovated patient rooms designed with family in mind. One care partner stated, “[The physical environment] was very good, actually. Her particular hospital, just a few years before, built a brand-new hospital, so it was all single rooms. She was, happened to be in a pretty large room with a lot of space to move around. I mean, it was clean and well equipped and lots of seating for visitors in the room, large windows with a good view.” (CP9). Another care partner noted that a lack of space was a barrier in attending their loved one's therapy session: “…where he was, was pretty right quarters, and we just kind of stood in the little, I wouldn’t even call it a hallway, but just a little area between the different, like the nurses’ station and that. And we were definitely in the way” (CP14).

“[The physical environment] was very good, actually. Her particular hospital, just a few years before, built a brand-new hospital, so it was all single rooms. She was, happened to be in a pretty large room with a lot of space to move around. I mean, it was clean and well equipped and lots of seating for visitors in the room, large windows with a good view.” (CP9)

The concept of available space came up frequently when care partners discussed private and shared rooms. Some care partners noted that the PLWD's private room made their experience in the hospital more comfortable, as they had more space to stay in the room (CP4, CP5, CP6, CP9, CP10). One care partner expressed their appreciation for having a private room, adding, “Because, you know, they don’t have a filter, and if there's another patient in the room with them, you know, they could say things. They could say things that aren’t very nice or things, you know, either to them, about them or even not about them, having nothing to do with them, because you just don’t know” (CP4).

“Because, you know, they don’t have a filter, and if there's another patient in the room with them, you know, they could say things. They could say things that aren’t very nice or things, you know, either to them, about them or even not about them, having nothing to do with them, because you just don’t know” (CP4)

Several clinicians echoed the care partners’ preference for a private room. One clinician added, “Our hospital has double occupancy rooms. And so . . . logistics of doing caregiver training, like . . . in that space or caregiving involvement, knowing you’re trying to work with, I’m sorry, I have an email, a patient, and then the roommate is maybe throwing a fit. I mean, the family member might be distracted. The patient is certainly distracted. I’m distracted. So sometimes logistics can be challenging” (C1).

“Our hospital has double occupancy rooms. And so . . . logistics of doing caregiver training, like . . . in that space or caregiving involvement, knowing you’re trying to work with, I’m sorry, I have an email, a patient, and then the roommate is maybe throwing a fit. I mean, the family member might be distracted. The patient is certainly distracted. I’m distracted. So sometimes logistics can be challenging” (C1)

Multiple clinicians in our study (C23, C24) noted that the available space for care partners dramatically diminishes once numerous care team members enter the patient's room. One clinician shared, “I could say in our hospital, some of the rooms are very small, and it's hard to get even, like there's room for one other chair maybe, but it's very tight in there. And so as soon as, you know, you get a couple providers or team members in there, it can, I think, get uncomfortable for the caregiver to be in there” (C23). Some clinicians also discussed spaces outside the hospital rooms dedicated to care partners, such as waiting rooms, family cafeterias, and conference rooms. These clinicians noted that these additional spaces helped enable private conversations with care partners or provided additional space for care partners (C10, C12, C16). One clinician highlighted that a lack of appropriate space could diminish the care partner's presence, stating, “I think that there needs to be physical space for a caregiver. It matters. They don’t want to stay when there's nowhere to sit or go to the bathroom or if they’re very hungry, like an accessible place to eat” (C1).

“I could say in our hospital, some of the rooms are very small, and it's hard to get even, like there's room for one other chair maybe, but it's very tight in there. And so as soon as, you know, you get a couple providers or team members in there, it can, I think, get uncomfortable for the caregiver to be in there” (C23)

Layout of the Room

This theme captures reflections on room design and the organization of furniture and equipment. Some care partners and clinicians noted that the layout of the hospital rooms can influence the extent of care partner involvement. One care partner shared that their father's phone was not within his reach, impacting their ability to communicate with him when not physically present. They added, “…And I had been trying to get him touch with him. The phone was not nearby, and so that's why he wasn’t able to answer the phone.” (CP13).

“…And I had been trying to get him touch with him. The phone was not nearby, and so that's why he wasn’t able to answer the phone.” (CP13)

The clinicians’ comments were more focused on how furniture arrangement can impact care partner inclusion. One clinician noted that their hospital's room layout creates a division between the staff and care partners. They shared, “So it tends to be very much like a separation, you know, in terms of, like this is my part of the room. This is your part of the room. And in my part of the room, there's the computer. There's the bathroom. You know, there's the door” (C19). Another clinician (C24) explained that while care partners often have recliners to sit in, they frequently need to move to allow the care team members to tend to the patient. This clinician suggests that some newly renovated rooms in their hospital include a “care partner nook” that gives the care partners a designated space to stay near the patient comfortably. Once a clinician even compared their hospital rooms to a “Jenga game,” adding, “You have to like take one chair out and like to make room for somebody to sit, and like there's never enough chairs. Like in some of the rooms, there's a big column in the middle” (C18).

“So it tends to be very much like a separation, you know, in terms of, like this is my part of the room. This is your part of the room. And in my part of the room, there's the computer. There's the bathroom. You know, there's the door” (C19)

Comfort Level of the Space

This theme reflects perspectives on the comfortability of patient rooms, particularly regarding furniture for sleeping and environmental conditions. Many participants noted that their only option for sleeping in the hospital room was a reclining chair (CP4, CP8, CP10, CP13). While some care partners had no complaints about their sleeping arrangements, one care partner (CP3) noted that the size of the furniture was insufficient. Other care partners (CP6, CP8) shared that they had access to pull-out beds for more comfortable sleep. One care partner added, “And then they had sheets and bedding that fit it. I mean it wasn’t like they just threw, it all fit. It was just like a nice bed” (CP8). Knowing that the COVID-19 pandemic altered their experience, one care partner described their ideal setup: “If it was an optimum room, they would have a bed, whether it be a rollaway bed or something for you to have a comfortable night's sleep, not that you do in a hospital. But at least, have someplace where you can rest” (CP15).

And then they had sheets and bedding that fit it. I mean it wasn’t like they just threw, it all fit. It was just like a nice bed” (CP8)

While one clinician shared that their hospital offered cots to care partners who opted to stay overnight (C8), several clinicians shared that they were only able to provide recliners for sleeping (C12, C16, C18, C22-24). One clinician drew attention to the discomfort of sleeping in a recliner, stating, “And I don’t, I would say in a lot of the rooms, there's nowhere for them to spend the night, maybe like a chair that you could lay back a little bit. But who wants to sleep, yeah, right? Who wants to sleep in that?” (C18). Another clinician noted that the older rooms in the hospital were too tight for comfortable sleeping arrangements, but the newly renovated units had sufficient room for a sofa bed (C24).

“And I don’t, I would say in a lot of the rooms, there's nowhere for them to spend the night, maybe like a chair that you could lay back a little bit. But who wants to sleep, yeah, right? Who wants to sleep in that?” (C18)

Some care partners also drew attention to environmental conditions (i.e., light and noise) that made their experience in the hospital less pleasant (CP3, CP4, CP13). One care partner shared, “Like kind of confusion, again, like another new room, very bright, and her, the person across the hall was experiencing some sort of distress, so there was a lot of screaming happening across the hall. I remember a surgeon or a nurse or somebody was facetiming their kid, essentially like speakerphone, you know, in the hallway. So my mom thought, this was like not her surgeon, but my mom thought he was talking to her. You know, so, again, I guess, also, so like environmental stressors around” (CP3). A different care partner shared her gratitude for the placement of technology in the room, as it was positioned to reduce the amount of light in the room at night (CP6). Concepts related to light and noise were less discussed among clinicians.

“Like kind of confusion, again, like another new room, very bright, and her, the person across the hall was experiencing some sort of distress, so there was a lot of screaming happening across the hall. I remember a surgeon or a nurse or somebody was facetiming their kid, essentially like speakerphone, you know, in the hallway. So my mom thought, this was like not her surgeon, but my mom thought he was talking to her. You know, so, again, I guess, also, so like environmental stressors around” (CP3)

Personalization

This theme refers to care partners’ ability—or lack thereof—to tailor their loved ones’ hospital rooms to their preferences. Some care partners wanted to modify the environment to reduce unpleasant environmental stimuli for the PLWD. One participant shared, “…I remember all that stuff was happening in the hallway, and I remember like closing the door, and then the nurse like told me that they couldn’t have it closed, because they need to hear if like, you know, her vitals things were like hooked up to her finger and all that. So I think they needed to know if like, you know, whatever signal was coming. But I was like, oh, my God, like if the thing goes off, I will let you know. But for now, like there's so many environmental triggers happening, like I can’t even count, you know, in the hallway. And no one here seems to be mindful of that, so like let me just keep this closed, and I like vow to let you know, if something is beeping” (CP3). One clinician noted that encouraging care partners to modify the environment by bringing in the PLWD's personal items can help manage the PLWD's behaviors (C3).

“…I remember all that stuff was happening in the hallway, and I remember like closing the door, and then the nurse like told me that they couldn’t have it closed, because they need to hear if like, you know, her vitals things were like hooked up to her finger and all that. So I think they needed to know if like, you know, whatever signal was coming. But I was like, oh, my God, like if the thing goes off, I will let you know. But for now, like there's so many environmental triggers happening, like I can’t even count, you know, in the hallway. And no one here seems to be mindful of that, so like let me just keep this closed, and I like vow to let you know, if something is beeping” (CP3)

Parking

This theme captures perspectives on the ease and accessibility of parking at the hospital campus. Both participant groups mentioned parking as a relevant factor to care partner presence in the hospital. When asked about their mother's hospital admission process, one care partner shared, “We couldn’t find any parking that morning, and so it was like freezing cold, and my mom's like why are we outside? It's not even light outside yet. Like what's going on? You know, so I’m trying to like park, find where we’re going. You know, like it was just little things where it's like, okay, maybe there should be not just like disabled spots but like maybe there should be dementia-friendly parking” (CP3). One clinician expressed that the challenge of obtaining parking vouchers was a primary barrier to care partners’ involvement (C27).

“We couldn’t find any parking that morning, and so it was like freezing cold, and my mom's like why are we outside? It's not even light outside yet. Like what's going on? You know, so I’m trying to like park, find where we’re going. You know, like it was just little things where it's like, okay, maybe there should be not just like disabled spots but like maybe there should be dementia-friendly parking” (CP3)