The experience of using a hospital bed alternative at home among individuals with spinal cord injury: A case series

Objective To inform clinicians’ equipment recommendations by characterizing the experiences, skin integrity, and interface pressures in a series of recently discharged individuals with spinal cord injury (SCI) who chose to use an alternative adjustable bed system at home rather than a standard of care hospital bed with mattress overlay. Design Mixed methods, observational case series. Setting Community based. Methods Four individuals with cervical SCIs and one partner of a participant with SCI completed interviews about their experiences using an alternative adjustable bed system and their skin health. Participants also underwent pressure mapping on their alternative adjustable bed system and on a standard of care hospital bed with mattress overlay. Interview themes were identified using a consensus qualitative approach. Pressure readings at the sacrum and ischial tuberosities in supine and at the greater trochanter in side lying were compared between surfaces. Outcome measures Semi-structured interview, questionnaire, and pressure mapping. Results All participants reported positive experiences utilizing an alternative adjustable bed system and no episodes of bed-related skin breakdown. Reasons for wanting an alternative adjustable bed included a greater sense of normalcy and larger size. Participants perceived their alternative beds to be comfortable, and to have features that aided their function and assisted their caregivers. Features used included head of bed elevation, height elevation, and bed rails. All participants had clinically acceptable pressure mapping patterns on the alternative adjustable bed system. Conclusion An adjustable bed system, combined with other skin protection strategies, may be appropriate for certain individuals with spinal cord injury.


Introduction
Maintaining skin integrity is an important aspect of well-being for individuals with spinal cord injury (SCI). The selection of an appropriate support surface (mattress or mattress overlay) is a fundamental component of a pressure ulcer prevention program. 1,2 To assist with both mobility and skin protection, a hospital bed with a specialty pressure-reducing surface is typically part of the durable medical equipment (DME) that is recommended for people with acute SCI who are returning home following inpatient rehabilitation. Although many studies have demonstrated the benefits of specific pressure-relieving surface, [3][4][5][6][7][8] there is no consensus on the optimal type of a support surface. While skin protection is a top priority in choosing a support surface, other factors are also important. Westcott and Welding 9 studied bed use among patients who transitioned back into the community. Their findings revealed that health professionals were prescribing mattresses that did not meet the needs of patients well, and should consider aspects such as mobility, comfort, microclimate, and patient's choice when ordering a mattress. In some cases, mattresses were downgraded to less dynamic surfaces or to standard beds, and individuals reported better comfort, mobility, sleep, and/or ability to sleep with a partner after the downgrade. 9 This investigation supports the idea that the selection of a support surface should consider not only clinical factors but also patient preference and highlights the need for more information about outcomes associated with the use of non-hospital bed systems.
Researchers have found that people need and want to retain their homes as they were pre-injury as an expression of themselves and their families. 10 However, due to the significant physical motor impairments resulting from an SCI, certain adaptive equipment in the home is necessary for discharge. Equipment provision can challenge an individual's sense of home. 11 Among individuals with disabilities living at home, the introduction of a hospital bed altered their perception of home into something different, like a hospital setting. 11 Due to the limited research regarding the use of hospital bed alternatives among the SCI population, as clinicians, it is difficult to determine whether it is appropriate to recommend the use of alternative adjustable bed systems rather than specialty pressure-reducing mattresses placed on hospital beds.
In our recent experience as occupational therapists in inpatient rehabilitation, we have encountered several patients with SCI who declined to be discharged home with a hospital bed with specialty mattress overlay and chose instead to use an alternative adjustable bed system whose appearance is similar to beds used by the general public. It is expected that for some people with SCI, an alternative adjustable bed may improve the quality of life and have little to no difference of pressure distribution between the two surfaces. However, there are no published data to confirm these expectations. To address this knowledge gap, we conducted a case series to systematically gather information about the experiences of people with SCI who use alternative adjustable bed systems, to provide feedback to clinicians about the outcomes of these patients after discharge. This case series can inform the design of future investigations and will provide clinicians with information that can drive more appropriate, client-centered bed recommendations for individuals with SCI living in the community.

Design and participants
This investigation is an observational case series using mixed methods. Participants were recruited from Kessler Institute for Rehabilitation, an inpatient rehabilitation facility with a 48-bed unit for SCI rehabilitation. All patients recruited were individuals with a new SCI who completed inpatient rehabilitation, were discharged home, and ordered an alternative adjustable bed system (n = 4), the Assured Comfort® bed. This bed is one of several adjustable beds available on the commercial market and was selected because of recommendations from the former patients living in the community. This bed is height adjustable, with head elevation, knee elevation, optional side rails, customized mattress options, and "cloud lift" option for the use of mechanical lift for transfers. Sizes are available in twin, full, queen and split king (in which the two sides operate independently). This bed also comes with a variety of head board, foot board, and finish options for aesthetics.
The primary Occupational Therapist (OT) who treated each candidate during their inpatient rehabilitation called the potential participants and their partners (if applicable) to inform them about the study and to seek permission for a member of the research team to contact them. Research team members who were OTs on the unit (L.S. and R.L.) approached patients by telephone to inform them of the study, address questions, and obtain consent by telephone. IRB approval was obtained from the Kessler Foundation IRB before commencing research procedures.

Data collection
Data collection involved three components: questionnaires, a semi-structured interview, and pressure mapping. Most data collection occurred in the participants' homes, with the exception of a portion of the pressure mapping which was done on the hospital campus. During the home visit, participants provided demographic information, injury characteristics, equipment information, and functional status (Table 1) via a brief questionnaire. They then participated in an audiorecorded interview that was guided by a set of discussion questions. Discussion topics included reasons for choosing an alternative adjustable bed system, experiences using the system, other pressure injury (PI) prevention activities, or related topics brought up by the interviewees ( Table 2). Pressure mapping was then performed on the alternative adjustable bed system in the participant's home. Within two weeks of the home visit, participants returned to the hospital campus to

Data analysis
Using a consensus qualitative approach, 12 the members of the research team read the interview transcripts independently to get an overall sense of the tone and content of the material and identified major themes and topics. A coding scheme, including themes and subthemes, was developed with input from all investigators (L.S., R.L., J.Z.) to assist with coding by two analysts (L.S. and R.L.). Coding was performed in a Microsoft Excel® spreadsheet. Segments of text (mutually agreed upon by the analysts) were entered in rows of the spreadsheet, with codes/subcodes listed as column headings. Each analyst independently marked the columns pertaining to themes relevant to that segment of text. The analysts tested the coding scheme and document by coding one transcript independently, discussed discrepancies in their coding and interpretation of content, refined code naming as needed, and determined appropriate codes in the initial transcripts by consensus. The remaining transcripts were coded independently using the revised coding scheme and spreadsheet. Themes and subthemes were summarized, and quotes that most accurately illustrated the themes were identified by the analysts. The researchers did not assess statistical significance between pressure mapping readings when comparing readings on the alternative adjustable bed system and the standard hospital bed with gel overlay due to lack of information on ideal numerical readings and lack of power to detect significant numerical differences "How important was the size of the bed to you?" "What features were important to you when selecting your bed for home?" "Did height adjustability matter to you?" "How long have you been sleeping in this bed?" "How satisfied are you with your current bed?" "What do you like/dislike and why?" "How many hours do you spend in your bed in a 24 hour period?" N/A "Who do you sleep with in your bed?" "On average, how many nights per week do you sleep with him/her/them?" "How comfortable is your current bed?" "Was your level of comfort different on the hospital bed? In what way?" "What are differences between this bed and the one you used in the hospital?" "Are your transfers more/less difficult? And if so, why do you think that is so?" "Would you recommend your current bed to someone with an SCI?" "Why?" "Since discharge, have you had any changes in your skin at your sacrum, heels, or buttocks?" "Do you have any bed related pressure injuries currently?" "What other actions are you taking to keep from developing problems with your skin?" "Do you do daily skin checks? How often?" "Do you do weight shifts? How often?" for the coefficient of variation and average pressure. Pressure mapping readings were deemed clinically acceptable when readings lacked high-pressure gradient peaks (orange-or red-colored zones) measured in millimeters of mercury at the sacrum and ischial tuberosities in supine or at the greater trochanter in side lying. Differences in average interface pressure readings were calculated (adjustable bed − hospital bed) and expressed as a percentage of the adjustable bed pressure reading. To facilitate comparison, a similar sensing area was used for each participant in each position.

Results Participants
Four male individuals with cervical SCI and one partner of an included individual participated in the study. Two participants had no partner at the time of the study, and one participant's partner was unavailable. See Table 3 for demographic information of the participants with SCI. The partner, who participated (associated with Participant 1) was a 26-year-old female, lived with her significant other and provided unpaid 24-hour caregiving.

Themes emerging from interviews
A description of themes identified is given below with additional illustrative quotes shown in Table 4.
Reasons for discharging with hospital bed alternative All participants described a typically prescribed hospital bed as being 'too small,' leading them to prefer a hospital bed alternative in the home. Participants expressed the desire to share a bed with a significant other and did not see this as a possibility in a hospital bed. One participant stated "I think it is very important for us to share a bed … no one has a spouse in a different room or in a different bed. It just doesn't seem right"[Participant 1]. The majority of participants considered how their bed would affect the aesthetics of their home. Participants described an interest in the adjustable bed system because it looked more like a traditional bed, and was perceived to help achieve a greater sense of normalcy. They associated a hospital bed with the hospital setting and wanted to separate their homes from the hospital environment. Participant 3 stated "I did not want to look at a hospital bed and be reminded that I'm somehow a patient still, you know … the bed was a huge thing, you know, to normalize." Three participants reported that their occupational therapist's recommendation was a reason for selecting the alternative adjustable bed.  Table 4 Illustrative quotations for each theme.

Theme Subtheme Quote
Reasons for discharging with hospital bed alternative Size "How do you sleep 2 people in a twin size bed? A hospital bed is a twin size bed." [2] "I just remember it being small, that was the only difference really … not necessarily uncomfortable but just not practical, for our life." [1] Sharing a bed with significant other "I think it is very important for us to share a bed … like no one has a spouse in a different room or in a different bed. It just doesn't seem right." [1] Sense of being normal "We didn't want to come home to feel like a hospital setting especially for the kids." [1] Aesthetics "Well just that it was a normal looking bed with a headboard and a footboard. That you know it was great that I had choices … tufted headboards … ones that were more metal. It was great to have options, like everyone wants to be able to go to any store and shop for what they want … there was not like one set option-beige and metal and sad looking." [3]

Perceptions of bed's effect on intimacy
Bed size has no effect on physical intimacy Negative psychological effect of hospital bed " … we've done it in the back of a cars and stuff, I don't think a beds going to matter … psychologically yeah, what do you want me to say 'come back to my bed, here's a hospital bed.'" [2] "I don't think physically it would have been different, just mentally … like who wants to have any relations in a hospital bed?" [1] Physical Closeness with partner "I can't live my life not sleeping in the same bed as my significant other. Like that's just not gonna happen. Cause for us the physical intimacy really was just about cuddling, about touching, about being close to one another … it's that physical closeness, it was super important to me." [3] " … to be in bed with my partner … with the person I love and spent 16 years with. To have that closeness-it was super important." [ These individuals believed that having a hospital bed alternative would allow them to comfortably share a bed with their partner in the home.

Likes
When participants described their experiences using the alternative adjustable bed system, they described the impact of the bed on caregiver ease. Participants reported that due to the height adjustability of the bed with the use of a remote control, the bed could be adjusted higher for a caregiver to safely assist with activities of daily living and lowered to perform level transfers to the wheelchair. The caregiver reported "If I'm dressing [him], it makes it easier that he's higher so I don't have to bend over more" [Participant 9369].
All of the participants also reported that they noticed an improvement in function for tasks such as rolling and transferring using the alternative adjustable bed system when compared to a standard of care hospital bed due to the larger space and increased firmness. The majority of the participants also liked being able to perform leisure tasks in the alternative adjustable bed, such as watching television, using their cellphone, and spending time with their children in bed, due to the head elevation feature. Two of the participants reported that they enjoyed the adaptability of the accessories associated with the alternative adjustable bed system, allowing for accessories to be removed improving aesthetics. For example, Participant 1 mentioned "You can barely tell it is a medical bed. And the handrails and stuff we can take off so you wouldn't even be able to tell [that it is not a regular bed]." While half Height Elevation "The head tilt up and down and the whole bed going up and down so that I could adjust for transfers." [4] Bedrails "Yeah, they [bedrails] help a lot. I can turn myself with the bedrails, without them I need assistance." [4] Foot Elevation "The leg part. I found that you know when I would be raising the head up to sit up, and I wasn't getting out of the bed but going back down and coming back up and it kept pushing my feet further and further down … so it's better, because I have the leg thing, I can raise the legs up first, and then when I go up it stops me from sliding down the bed." [3] Size "There is just more space for turning. [in the alternative adjustable bed]" [1] Problems Encountered Size (too small) "I feel like we should have gotten a bigger size actually … like when I turn myself, I'm in her space … So if I had a bigger bed I'd have more space to turn myself without waking her and bothering her as much." [1] Mattress "I chose the 10 inch mattress and I really would prefer the 8 inch. If I had 2 more inches, when I sit at the edge of the bed my feet would be solidly on the ground … you know when those legs are dangling they just pull your hips and it makes transferring a lot scarier." [3] Levinson et al. of the participants reported no change in the quality of sleep, the other half indicated improvements in their sleep. Three of the four participants explicitly stated that they were satisfied with their adjustable bed system and all reported that they found the bed comfortable. Most notably, each participant reported that they would recommend this bed to other individuals with an SCI.

Features used
Some of the features that all of the individuals reported using on the alternative adjustable bed system included the head of bed elevation, height elevation, and the bedrails. These features provided the participants with increased independence. For example, head elevation was helpful for performing activities in bed such as watching TV or intermittent catheterization. The height elevation feature was used to facilitate transfers, as well as to improve caregiver ergonomics when providing assistance for activities of daily living. One participant stated "Yeah, they [bedrails] help a lot. I can turn myself with the bedrails, without them I need assistance" [Participant 4]. Two participants also mentioned that they used the foot elevation features for positioning and edema management.

Problems encountered
Despite their satisfaction with their alternative adjustable bed system, each participant reported some challenges with its use. Although two of the participants purchased a queen size alternative adjustable bed system, they reported that they felt the bed was still "too small" for optimal comfort. They each stated that if they had more space within the home, they would have purchased a king-size, instead. One specifically explained that if he had the split king instead, he would be able to elevate his side separately and avoid disturbing his partner when he needed to get up to catheterize himself during the night. Some individuals reported issues with the bed's mattress. One described ordering the wrong mattress, as his current mattress was too high for transfers, while the other described the mattress as "too soft."

Skin health status, perceptions, and behaviors
Participants discussed their perceptions of what factors are essential to maintain good skin health. Three of the four participants mentioned that the type of mattress is important to reduce the risk of skin breakdown. One participant stated "if it's hard and uncomfortable then you're going to get a pressure sore" [Participant 4]. Half of the participants described weight shifts and/ or skin inspections as being the main factor(s) contributing to PI prevention. When describing their actual skin health behaviors, all participants stated that they weight shift in bed; however, timing ranged from 1 to 4 times a night across participants. Types of weight shifts also varied from turning, to only sitting up in bed for catheterizing during the night. All participants also reported that they perform skin checks, with one caregiver stating that she performs skin checks "every time he showers … I mean basically every day" [Participant 9369]. Three of the participants mentioned performing wheelchair weight shifts, and two of the four specified moisturizing to maintain good skin.
No participants reported pressure injuries at the sacrum, ITs, or greater trochanter since the use of the alternative adjustable bed system. One participant reported that he developed a PI on the heel since discharge, but that his wound care specialist determined it was attributed to tight shoes, not contact with the bed. After receiving wound care treatment and changing his footwear, the PI healed.

Pressure mapping
When comparing pressure mappings between the two surfaces among each participant, half of the participants had lower average pressure on the alternative adjustable bed system in both positions assessed (supine and side lying). Two out of four participants had lower average pressure on the alternative adjustable bed system in only one of these two positions. (Table 5). All four participants had clinically acceptable pressure mapping patterns on the alternative adjustable bed system, lacking high pressure gradient peaks (orangeor red-colored zones) at the sacrum and ischial tuberosities in supine or at the greater trochanter in side lying. See Figures 1-4

Discussion
The results of this study suggest that the opportunity to utilize an alternative adjustable bed once in the home can affect many aspects of life. An SCI is a life-changing event, and many people with SCI seek to regain aspects of their lives that existed prior to injury. Use of a hospital bed after discharge from rehabilitation was concerning due to the appearance and "small" size. Having a bed that appeared similar to a standard bed was very important to the participants, as it not only provided them a greater sense of normalcy but also provided enough space to sleep with a partner. Many people value sharing a bed with a significant other or family member; therefore, both the psychological and physical implications of having a "normal" looking bed allowed the participants to continue this important aspect of daily life. One of the main reasons participants mentioned wanting a hospital bed alternative was to be able to comfortably share the bed with a significant other, which is consistent with previous research revealing that the forced physical separation a hospital bed imposes, disrupts the close communication and physical contact among couples. 13 Individuals with SCI may wish to consider transitioning to their regular beds after discharged home. However, this transition may not be feasible for some due to medical complications and/or mobility impairments. Many individuals with SCI, especially those with tetraplegia, cannot roll, participate in dressing, get in/out of bed, and/or transfer without hospital bed features by the time they discharge from inpatient rehabilitation. Commercially available adjustable bed systems such as the one used by the patients in this case series may provide a means of achieving greater "normalcy" and also having features necessary for health and function, such as elevation, head of bed, foot, bed rail features. Participants enjoyed having a bed that not only appeared to look like a normal bed, but simultaneously could improve their function and decrease the burden of care. Additionally, participants did not have to give up their comfort, as they perceived their adjustable bed systems as comfortable, and expressed satisfaction and better quality of sleep as   compared to when using a hospital bed in the past. Although participants all described having an overall positive experience using the alternative adjustable bed system, they also shared "lessons learned". In particular, participants reported that a king-sized bed might have allowed for better mobility and independence without disturbing their significant other. Not only is the king-size bigger, but also it is also split, allowing one side of the bed to be adjusted individually without affecting the other side. Due to the impact of skin health on quality of life among individuals with SCI, it was interesting to observe that all pressure mappings in both side lying and supine were clinically acceptable on the alternative adjustable bed for all participants. Out of all eight pressure mapping comparisons between the two surfaces (four in supine, four in side lying), six of the mappings actually revealed even better average pressure (lower pressure) on the alternative adjustable bed system (Table 5). It was reassuring to discover that not only were the participants in this study reporting a good experience using a bed that is not traditionally considered by clinicians, but they also did not experience loss of skin integrity or function. Participants reported performing a number of other actions to prevent PI, including weight shifts and skin inspection, which likely contributed to their skin health. Recommending a similar adjustable bed system for individuals with SCI may reduce the likelihood of them using a standard, non-adjustable bed that puts them at higher risk for falls, injury, and/or skin breakdown. When recommending an alternative adjustable  bed system, clinicians should consider a patient's PI history, caregiver availability to assist with weight shifts/turning, and openness to explore out-of-pocket DME expenses.

Limitations
This study was limited by the small sample size and case series design. The design of the study did not allow for statistical comparison between the hospital bed and alternative adjustable bed system. Additionally, all participants used one type of an alternative adjustable bed system, the Assured Comfort bed ®. Finally, there was only one partner available to participate in the study. Therefore, the study lacks insight into the partner experience while using the alternative adjustable bed system.

Conclusion
The overall experience among all participants utilizing an alternative adjustable bed system in the home was positive and all expressed that they would recommend this bed to other individuals with SCI. There were no reported bed-related pressure injuries and all four participants had clinically acceptable pressure mapping patterns on the alternative adjustable bed system. Based on the results of this study, using the alternative adjustable bed system has allowed these individuals to maximize their comfort, independence, and psychological well-being without compromising their skin integrity. When recommending equipment for discharge home, clinicians should consider an adjustable bed system and other preventative strategies for overall quality of life among certain individuals with spinal cord injury.