All day in bed, all night in the wheelchair: Unmet attendant care needs of people with spinal cord injury

Abstract

Context

Having dependable attendant care is essential to the health and well-being of those most severely impacted by a spinal cord injury (SCI). Our objective was to identify how often people with SCI who require assistance for transfers either spend a full day in bed or all night in a wheelchair because they do not have paid or unpaid assistance.

Findings

Of the 918 respondents, 319 (34.7%) indicated they needed someone's help for basic activities of daily living and 229 (24.9%) relied on someone's assistance for wheelchair-to-bed transfers. Nearly a quarter of participants (22.2%) reported staying in bed all day for at least one once on during the past year, with a median of 10 times among those with at least one day. Men reported a higher rate than women (25.6%, 13.6%) and nonwhites-Hispanics (33.3%) reported a higher percentage than non-Hispanic whites (18.6%). Just over one in every 20 participants (5.3%) reported staying in the wheelchair at least one night because they did not have attendant care, with a median of 2.5 times among those with at least one night. Over one in 10 (11.7%) nonwhites and Hispanics reported at least one overnight in the wheelchair compared with only (3.1%) for non-Hispanic whites.

Conclusion/clinical relevance

Staying in bed all day and staying in the chair all night due to lack of attendant care represents a breakdown in the attendant care system and a threat to the well-being of those with SCI, particularly nonwhites and Hispanics, and men.

Spinal cord injury (SCI) results in significant motor impairment that often requires daily assistance to perform activities of daily living (ADL), including assistance getting in and out of bed or a wheelchair. A breakdown in the provision of attendant care for any reason may leave the individual in bed all day or, worse yet, up in the wheelchair overnight. Unfortunately, even a single occasion of staying up all night in a wheelchair or in bed in one position with no means of pressure relief or weight shifting, may result in a pressure injury or other type of secondary health condition (SHC) (1, 2).

Although some people with SCI who need assistance for ADLs, such as for chair transfers or body repositioning, have professional (formal) attendants, a substantial portion rely on both paid and unpaid caregivers, including family members and friends (3). There are also a significant number of those with SCI who rely on paid personal care assistance (3, 4). While formal caregivers may provide a safety net for some individuals, there still may be many who need critical assistance, but lack a support network or financial means, putting them at greater risk of lapses in attendant care that could adversely affect their health (5). Although there is occasional mention of the occurrence of those who spend all night in a wheelchair (6–9), there is an absence of research on the frequency with which people are left fully without care, including times when someone is not available to either get them in or out of bed.

Our purpose was to identify the frequency with which individuals with SCI who rely on caregivers have either stayed in bed all day or in the wheelchair overnight because they did not have the needed attendant care.

Methods

Participants

Participants were adults with traumatic SCI with non-complete recovery and a minimum of one-year post-injury at the time of assessment. Participants were initially identified through a specialty hospital in the Southeastern United States (US) and through a state-based, population registry in the Southeastern US and enrolled in a longitudinal study. The initial pool included 1,407 potential participants after eliminating those who were deceased or could not be located. There were 918 responses (64.3%). Of these, 319 required some type of ADL assistance (34.7%) and 229 required assistance with wheelchair transfers (24.9%). The remainder of this report deals with these 229 cases. The average age was 56.3 years, with an average of 31.2 years since SCI onset. Seventy percent were male. Just under 73% were non-Hispanic white, followed by 22.4% non-Hispanic black.

Procedures

Institutional review board (IRB) approval was obtained prior to initiating the study. Prospective participants were sent recruitment letters via mail to describe the study and to solicit participation. The letter contained a unique identification number and a link to a web application, REDCap, so that participants could complete the self-report assessment (SRA) online. If it was not completed within approximately 4 weeks, a paper and pencil SRA was mailed, followed by two follow-up mailings and a follow-up phone call. Participants received $50 in remuneration for their participation. The data were collected between September, 2021 and October, 2022.

Measures

Participants were asked the average number of hours per day they receive paid attendant care, as defined by “How many hours in a typical 24-hour day do you have someone who is PAID to provide physical assistance for personal care activities such as eating, bathing, dressing, toileting and mobility?” They were also asked the number of hours of nonpaid attendant care (“How many hours in a typical 24-hour day do you have someone who is not paid to provide physical assistance for personal care activities such as eating, bathing, dressing, toileting and mobility?”), as well as whether they needed help transferring in and out of bed (“Do you routinely need physical assistance to get out of bed and into a wheelchair or scooter?” and “Do you routinely need physical assistance to get into bed?”).

The two study outcomes were based on individual items asking the number of times where participants stayed in bed all day and the number of nights they stayed in the wheelchair all night because of a lack of attendant care. These items were phrased as follows: (1) “Over the past 12 months, how many times did you stay in bed all day because you did not have someone to help you get out of bed? (Do not include days you stayed in bed because of illness or a pressure ulcer)” and (2) How many days during the past 12 months did you stay in your wheelchair overnight because you did not have someone to help you get into bed?

Statistical analysis

All analyses were completed using IBM SPSS Statistics for Windows, version 25.^a Descriptive statistics were used to describe the demographic and SCI information, as well as items related to attendant care. Means and standard deviations were calculated. Each of the two outcomes were dichotomized to identify relationships of demographic and SCI characteristics with their occurrence. The chi-square statistic was used for categorical comparisons as a function of sex, race ethnicity (dichotomized into non-Hispanic whites, nonwhites and Hispanic), and injury severity. Injury severity was broken down into four groups based on a combination of neurologic level and ambulatory status, with all ambulatory participants in one group and nonambulatory participants grouped into high cervical (C 1 – C 4), low cervical (C 5 – C 8), and noncervical. Independent t-tests were used for the three aging indicators (age at injury onset, current age, years since SCI onset).

Results

Descriptive

The majority of participants were male (70.2%) and non-Hispanic white (72.6%). Just over 22% were black non-Hispanic and just under 5% were Hispanic. The average age of the participants was 25.1 years at injury onset (SD = 10.2) and 56.3 (SD = 11.9) at the time of the study (31.1 years had passed since SCI onset). In terms of SCI severity, the largest group was low-level tetraplegia/nonambulatory (48.9%) and the lowest was for ambulatory participants (10.7%). One in five participants were noncervical/nonambulatory and just more than that (20.4%) were high level tetraplegia nonambulatory.

The average number of hours of paid attendant care was 6.8 (SD = 7.6; range = 0, 24), with a median of 5.0 and an interquartile range of 22. The lower median was because 11.5% reported 24-hour care. The average number of daily unpaid hours was 9.6 (SD = 11.7; range = 0, 24), with a median of 10.5. Just over 27% (27.2%) of the participants reported having 24-hour daily nonpaid assistance.

Bed all day

Just over 1 in 5 participants (22.2%) reported at least one occasion in the past year of staying in bed all day because of a lack of attendant care, with a total of 2,028 days across participants (Table 1). Because of outliers at the extreme of the distribution (six individuals reporting 96 or more days over the year), we calculated the median as an indicator of central tendency among those with a minimum of at least one day. The median was 10 (range = 1, 365). The interquartile range was 19.

Table 1.

Number of times stayed in bed all day due to lack of help to help you get out of bed.

Number of days	N (%)
No days	175 (77.8)
1 days	2 (0.9)
2 days	5 (2.2)
3 days	3 (1.3)
4 days	4 (1.8)
5 days	2 (0.9)
6 days	2 (0.9)
7 days	3 (1.3)
8 days	2 (0.9)
10 days	5 (2.2)
11 days	1 (0.4)
12 days	3 (1.3)
13 days	1 (0.4)
14 days	2 (0.9)
20 days	1 (0.4)
22 days	2 (0.9)
24 days	1 (0.4)
25 days	1 (0.4)
30 days	4 (1.8)
96 days	1 (0.4)
200 days	1 (0.4)
240 days	1 (0.4)
300 days	1 (0.4)
360 days	1 (0.4)
365 days	1 (0.4)

When comparing rates as a function of demographic and SCI characteristics, sex and racial ethnic differences were observed. Over one in four (25.6%) men reported at least one occasion of being in bed all day, compared with only 13.6% for women (chi-square = 3.89, P = 0.05). One third of the nonwhite and Hispanic participants reported at least one occasion of staying in bed all day, compared to only 18.6% for white non-Hispanic participants (chi-square = 5.40, P = 0.02). None of the other comparisons were statistically significant.

Wheelchair all night

Just over one in every 20 participants (5.2%) reported at least one time staying the wheelchair overnight during the previous year due to an absence of attendant care, with a total of 62 occurrences across the participants (Table 2). The median was 2.5 times among those with at least one night (range = 1, 30). The interquartile range was 5.0.

Table 2.

Number of nights spent in wheelchair overnight because you did not have someone to help you get into bed.

Number of nights	N (%)
No nights	215 (94.7)
1 night	4 (1.8)
2 nights	2 (0.9)
3 nights	1 (0.4)
4 nights	1 (0.4)
5 nights	1 (0.4)
6 nights	2 (0.9)
30 nights	1 (0.4)

A greater portion of nonwhite and Hispanic participants (11.7% compared with 3.1% for white non-Hispanic) reported at least one time spending the night in the wheelchair (chi-square = 6.24, P = .012). None of the other comparisons were statistically significant.

Discussion

The study findings raise significant concerns for the well-being of people with SCI who require assistance with transfers to get in and out of bed, particularly for nonwhites, Hispanics, and men. Having over 20% of the participants reporting a median of 10 days of staying in bed all day over the course of the year highlights the vulnerability of people with SCI who require regular assistance. Although the portion of individuals staying in the wheelchair overnight was substantially lower, about one out of 20 individuals, and the number of times affected was substantially lower (2.5 times per year), the potential complications resulting from a single episode are significant (10, 11). By any standard of care, these events are unacceptable and particularly disconcerting because they include both paid and unpaid assistants.

Because this was part of a larger study and reflected only two outcomes, the findings are preliminary in nature and raise many questions. Most clinical studies do not support bed rest for even critically ill patients because of the complications that bed rest can cause (12). What then happens to people with SCI who stay in bed all day due to a lack of attendant care? We do not know the extent to which they may have been left alone or without other basic attendant care needs. Furthermore, it is disconcerting that these lapses in care not only reflect paid caregivers, but they have occurred despite a safety net where people had an average of nearly 10 hours of nonpaid attendant care per day, in addition to an average of 6.8 of paid care. Clearly, the attendant care services that are available are not meeting the need for people with SCI. Given the worker shortage that has occurred since the pandemic (13, 14), the situation is likely to further erode over time, particularly as long-term caregivers move on and as family members within the safety net age.

Implications for rehabilitation, public health, and policy professionals

When a care attendant misses a shift or is even late, the stakes are high: their individual may be left in bed or in their chair, unable to do basic cares, including catheter or bowel programs. Our data indicates the current system is falling short of meeting the participants’ needs. In order to prevent these high-risk events, more attention needs to be given to the development and maintenance of the direct care workforce, specifically that of Personal Care Aides/Attendants.

Having those with SCI live in their own residence or among family and friends in their own community is not only a goal (15), but also our societal mandate (16). Lack of adequate home care may result in costly hospital treatment for complications such as pressure ulcers, often with a follow-up nursing home stay (17). Home health and personal care aides can care for individuals at home, preventing the need for institutionalization and decreasing the risk for hospitalization and/or nursing home care, as home care is recognized as integral to the “quality of life, health and safety” of individuals living with a disability (18).

It is notable that home health and personal care aide is the second largest occupation in the US (19). The need for home health and personal care aides is projected to grow 22 percent from 2022 to 2032, much faster than the average for all occupations (20). Yet the pay, benefits, and working conditions for many remain substandard (21), as they are among some of the lowest-paid workers in the U.S. labor force (22). The gap between demand and supply of healthcare workers is due in part to demographics, reflecting the aging Baby Boomer cohort (23) and associated health problems and the dramatic decline in the birth rate, a trend that accelerated during the Great Recession (24), leaving a shortage of people to do the work.

The shortage of care attendants is also driven by public policy choice. Pay for personal care assistants is governed more by state law and insurance companies than typical labor markets, and policymakers for decades have chosen to pay personal care attendants some of the lowest wages in the entire labor pool (25). This issue highlights the need for policymakers to reevaluate the compensation structure for personal care attendants and ensure that they receive fair wages for their valuable work. Until this is a priority, being in a wheelchair all night or in bed all day will still likely be a likely occurrence.

Methodologic considerations

There are several study limitations. First, there were only two questions related to lapses in attendant care, as this was part of a larger study and the questions were exploratory. Therefore, we do not know what precipitated the lapses, whether they were mostly unplanned, or what happened to individuals during the lapses. Second, we used self-report which is subject to errors with recall. Third, there were some outliers that may have inflated the total days or nights impacted and we simply do not know the accuracy of the outliers. That said, using the median as the indicator of central tendency eliminates the effects of extreme observations and the median number of events was still high, particularly four days in bed (median = 10). Fourth, although the data were collected as part of a longitudinal study on health outcomes, the information on outcomes was limited to a single time of measurement. It would be beneficial to identify changes over time. Fifth, the findings were limited geographically. We do not know how this may have affected the study outcomes. Lastly, even though the overall sample was substantial (n = 918), the sample decreased substantially when restricting it to those requiring assistance with transfers (n = 229) and this restricted our ability to develop risk models. We ran limited comparisons as a function of demographic (age, sex, and race ethnicity) and SCI characteristics (age at SCI onset, years since SCI onset, and SCI severity), due to sample size restrictions. Nevertheless, the preliminary findings did identify a higher portion of adverse outcomes among nonwhites and Hispanics, and among men.

Future research

Additional research is needed to identify other types of breakdowns in attendant care, risk factors, and their consequences. We need to know more about what happens to those who stay in bed all day and whether they have other types of needed support while in bed and the level of risk. Larger studies are needed to more completely understand factors related to attendant care breakdowns as well as identification of the actual consequences of unmet attendant care needs. This research will hopefully not only generate new information on attendant care breakdowns, but lead to policies that ensure greater attendant care support and larger attendant care support networks.

Conclusion

The current amount of attendant care received by the participants with traumatic SCI is substantial and includes both paid and unpaid caregivers. In spite of this care, over 20% of the participants reported an average of 10 high risk events during the previous year including spending all day in bed or, even much more concerning, spending all night in their wheelchair. This indicates the current system is falling short of meeting their needs and informal support networks of family and friends cannot compensate fully for the unmet attendant care needs.

Suppliers

• IBM SPSS Statistics for Windows [computer program]. Version 25.0. Armonk, NY: IBM Corp; 2017.

Abbreviations

ADL, Activity of daily living; SHC, Secondary health condition; SRA, Self-report assessment; SCI, spinal cord injury; US, United States.

Disclaimer statements

Contributors None.

Funding The contents of this publication were developed under grants from the National Institute on Disability, Independent Living, and Rehabilitation Research (NIDILRR) [grant number 90DPHF0009] NIDILRR is a Center within the Administration for Community Living (ACL), Department of Health and Human Services (HHS). The contents of this publication do not necessarily represent the policy of NIDILRR, ACL, HHS, and you should not assume endorsement by the Federal Government.

Declaration of interest None.

Conflicts of interest Authors have no conflict of interests to declare.