Daily Life in a Nursing Home: Impact on Quality of Life After a Spinal

Daily Life in a Nursing Home: Impact on Quality of Life After a Spinal Cord Injury Colette Hillebrand Duggan, Catherine Lysack, Marcel Dijkers, and Tara Jeji

This article describes the impact of the nursing home environment on the quality of life (QOL) of six persons with a traumatic spinal cord injury (SCI). The data resulted from serial in-depth interviews starting soon after injury. Study participants were aware that nursing home placement was inevitable due to their lack of financial and social resources. Multiple nursing home “moves” were punctuated by periodic rehospitalizations for SCI complications. Self-rated QOL was at a low shortly after injury, rose during the rehabilitation stay, declined by the first nursing home interview, and improved somewhat thereafter. Characteristics of the physical and social environment of the nursing home provide explanations for fluctuations in QOL. Key words: longitudinal study, nursing home, spinal cord injury, quality of life, qualitative research

I

mprovements in traumatic spinal cord injury (SCI) treatment and rehabilitation have greatly increased the survival rates of the SCI population. As a consequence, individuals who sustain a serious spinal injury are more likely to survive today than their counterparts of decades past.1 Along with scientific and technological advances have come changes in the way health care is financed and structured. Today’s managed care environment, with its focus on cost containment, has resulted in shortened hospital stays both in the acute and rehabilitation settings.2,3 Compared to the SCI population of two decades ago, today’s newly injured are often sicker when they begin their inpatient rehabilitation and are more likely to exit the medical care system before their physical condition has stabilized.2 Those who require skilled nursing care, especially those with limited financial resources and a fragile or nonexistent social support system, face the prospect of spending at least some portion of their lives in a nursing home. Statistical data from the Model Spinal 112

Cord Injury Care Systems have demonstrated a significant increase in discharges to community nursing homes over the past two decades.2,3 DeVivo3 reports that such discharges have increased from “3.1% before 1977 to 6% since 1993.”(p788) Fiedler et al.2 provide evidence that the rates have risen dramatically through the 1990s and may be in excess of 8% nationally today. Extrapolating from the estimate of Fiedler et al.2 and our Colette Hillebrand Duggan, PhD, is Research Associate, Research Department, Rehabilitation Institute of Michigan, and is Adjunct Assistant Professor, Wayne State University, Detroit, Michigan. Catherine Lysack, PhD, is Assistant Professor, Institute of Gerontology and Department of Occupational Therapy, Wayne State University, Detroit, Michigan. Marcel Dijkers, PhD, is Associate Professor, Department of Rehabilitation Medicine, Mount Sinai School of Medicine, New York, New York. Tara Jeji, MD, is Research Associate, Rehabilitation Institute of Michigan, Detroit, Michigan. Top Spinal Cord Inj Rehabil 2002;7(3):112–131 © 2002 Thomas Land Publishers, Inc.

Nursing Home Environment

own historical data,4 one might reasonably project discharge rates to nursing homes approaching 13% in the near future for SCI systems that draw heavily from an urban, nonwhite, low-income population. The literature at the intersection(s) of traumatic SCI, nursing home placement, and quality of life (QOL) is sparse and limited in scope as well as in depth. The studies that do exist are of three kinds. The first group focuses on the aging of the SCI population in general and the consequent pressures on the health care system to respond to the unique needs of older persons with disabilities who require higher levels of supervised care, which often includes nursing home care.5–8 The second stream of research concentrates more specifically on predicting which SCI patients will be discharged from rehabilitation to a community-based nursing home.2,3 Older age, minority status, being single and unemployed, having a cervical injury, functional dependency and nonambulatory status, and Medicaid sponsorship all are reported to increase the likelihood of nursing home placement.3 These two kinds of research are important in defining that segment of the SCI population that requires more extensive study if its needs are to be met. The third set of studies4,9–11 focuses on those individuals with SCI who have been discharged to a nursing home or comparable skilled nursing facility. Analyses by Weingarden and Graham4 and Putney et al.9 address factors related to the frequency with which these individuals are readmitted to the hospital for SCI complications (nursing home residence is one factor) and the associated high costs of rehospitalization for this group of patients. Frequent rehospitalization for SCI complications is, of course, an important determinant of QOL, whether the

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latter is defined in objective or subjective terms. Ulmer’s10 study of the unmet needs of the nursing home resident with SCI comes closer to addressing the topic of subjective QOL. Items high on the “wish list” of her young respondents were (a) daily physical therapy and a therapy room where they could work out unassisted and independently; (b) opportunity and ability to travel to parks, shopping malls, sporting events, and other venues frequented by young people; (c) chances to dine out, order out, or have food brought in by relatives; and (d) opportunity for private time and availability of private spaces to fulfill needs for intimacy and affection. The only study that directly addresses subjective QOL and nursing home residence is the case control analysis of Putzke and Richards11 that used data drawn from the database of the Spinal Cord Injury Model Systems. Life satisfaction was significantly lower among nursing home residents than among their community-dwelling counterparts. Self-reported handicap was significantly higher in the nursing home sample, particularly in the domains of physical independence, mobility, occupational functioning, and economic self-sufficiency. The authors conclude that future research would profit from a more in-depth assessment of nursing home living arrangements and their impact on QOL after SCI. Halstead12 states that the ideal of all rehabilitative settings is a humanistic healing environment—one that decreases discomfort and enhances physical and psychological well-being. To the extent possible, QOL should also factor into discharge decisions at the conclusion of treatment. Unfortunately, comfort and well-being may not weigh very heavily in community placement decisions for patients with SCI who through adverse

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circumstances have no option other than a nursing home. Those discharged to a nursing home are likely to be male, relatively young, and of minority status. The majority of nursing home residents are elderly women whose medical needs and service requirements are markedly different from their SCI co-residents. Moreover, the typical skilled nursing facility may not be equipped to provide the necessary level and intensity of SCI care demanded by today’s managed care environment. DeVivo3 cautions that discharge to a nursing home should be “ideally reserved for situations in which the person’s needs cannot be met any other way.”(p785) Given the increasing rate of discharge to nursing homes,13 more studies need to be undertaken before we can convincingly determine the appropriateness of the nursing home placement. QOL is embedded in personal experience, and self-reported QOL after SCI is the result of a constantly shifting interplay between expectations about the recovery process and actual progress and accomplishment.14,15 The environmental context in which recovery takes place also enters into the individual’s calculation of QOL. The purpose of this article is to describe daily life in a nursing home and to examine its impact on QOL after SCI. We address the following questions: Who are the persons who “end up” in a nursing home? How do they fare in the nursing home setting over the early months postinjury? And how does daily life in a nursing home impact on their perceived QOL? Conceptual and Methodological Issues Subjective QOL is commonly defined as the individual’s response to the congruence (or lack of it) between expectations and

achievements, as experienced within a time perspective.16,17 Depending on the degree of congruence or gap, the cognitive and emotional reaction is one of satisfaction or dissatisfaction, happiness or depression, or wellbeing or despair.18–20 Time is a significant element in the conceptualization of subjective QOL for at least two reasons. First of all, most individuals conceive of their life course as a series of sequential future events, with a timetable for their occurrence and an estimate of the probability of their occurrence.21,22 For the individual who incurs it, a traumatic SCI inevitably evokes a sense of being “off time.”22 Adjusting to SCI is illdefined at the outset, because there is no readily retrievable template upon which to anchor expectations for the future life course. The prospect of living a portion or all of one’s remaining years in a nursing home only adds to the uncertainty and uneasiness. Time also enters into the equation because the number of years lived with a physical disability may play a pivotal role in a person’s reactions to the gap between expectations and what is experienced as reality. The major work of recovery involves revamping one’s expectations and reinterpreting accomplishments, something that necessarily requires time.23–25 For the newly injured, QOL is also inextricably linked to place. Rehabilitation and recovery take place in multiple, successive, and circumscribed environments (general hospital, inpatient rehabilitation facility, and community, which is typically a private residence or a nursing home). The impact of environment on the creation and maintenance of disablement has been given considerable attention by the World Health Organization in developing the International Classification of Functioning, Disability and Health (ICIDH-2).26 Central to our concern


here is that little is known about the nursing home environment and what impact it has on medical, functional, social, and psychological outcomes. If the ICIDH-2 is to become a useful framework for clinical practice, research, and policy making, its further development must be grounded in research on the interrelationship between the individual and (a) the natural and built environments of the nursing home, (b) the sociocultural and attitudinal dimensions of the nursing home environment, and (c) the structural aspects of health policy, health services, and health systems. To a significant degree, progress in this realm is contingent upon a methodological approach that is capable of looking at the nursing home environment from the perspective of the resident who lives there. Studies utilizing quantitative measures of life satisfaction, although methodologically clean, offer at best a proxy for the “insider’s viewpoint.”27 Their use can obscure or misrepresent the nursing home experience, which is multilayered and far too complex28,29 to be reduced to nothing but numbers on a scale. Furthermore, narratives of the disability experience and stories about everyday life in a nursing home rarely make their way into the public discourse.30–32 A qualitative case study is uniquely suited to exploring and describing subjective realities, environmental context, and social change33,34 and can make a valuable contribution to our understanding by providing idiographic explanations for linkages between QOL, the nursing home environment, and physical disability. Method The data for this case study were produced as part of a longitudinal investigation of QOL

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after SCI. During the project’s first year, 43 newly injured patients with SCI were recruited into the study; they are currently being followed prospectively for 30 months via serial in-person interviews in the hospital and community settings. The findings reported here pertain to the six participants who were subsequently discharged to and currently remain in a nursing home facility. Participants

Participants were recruited from SCI patients admitted initially to a large acute care hospital affiliated with an urban university or, alternatively, to its inpatient rehabilitation facility. The latter group received all its acute care in nonacademic hospitals in the region or elsewhere in the state. Additional criteria for inclusion in the study were (a) discharge destination within the local metropolitan area or region; (b) no life-threatening illnesses that would preclude a prospective, longitudinal follow-up; (c) no physical, cognitive, or speech and language difficulties that would prevent participation in sustained conversations of 1 to 1.5 hours; (d) ability to read, write, and speak English; and (e) willingness to participate in up to seven interviews extending prospectively through 30 months postinjury. In compliance with our institution’s requirements, prior Institutional Review Board approval was secured and consent forms were obtained from all study participants. Sources of data

The researchers relied on three sources of data. The principal one was the transcripts of interviews with participants. For analytic purposes, transcripts were triangulated with two other sources of data, which were the interviewers’ field notes and medical records

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that supplemented, clarified, validated (or questioned) information obtained through interviews. Multiple approaches to data gathering were seen as complementary and as enhancing the overall reliability and validity of the findings. Interviews

Interviews were held in the affiliated acute care facility (if the patient was initially hospitalized there), at the beginning and end of the rehabilitation stay, and after discharge at about 6, 12, and 20 months postinjury. Because this study is still ongoing, no study participant has reached the 30-month mark. Of the six individuals who were discharged to a nursing home, two have completed the 12-month interview and four have been interviewed at 20 months postinjury. Research interviews were in-depth and semi-structured, with a set of broad questions serving as a general guide. The purpose of the interviews was to obtain descriptions and evaluations of life after onset of SCI. At the core of all interviews was a set of questions that focused on perceived QOL (definitions, ratings, and perceived factors enhancing or detracting from QOL). Another set of interview questions focused on “what life after SCI was like,” “how they were faring,” and “how life had changed” for them as they moved from the acute care to the rehabilitation setting and then on to private dwelling or nursing home. Anecdotal stories of daily life were welcomed. All interviews were audiotaped for subsequent qualitative analysis. The length of interviews varied; interviews in the acute care setting were necessarily brief and were tailored to the individual’s physical tolerance (15–30 minutes typically). Interviews conducted at the beginning

and toward the end of the rehabilitation stay were variable in length and sometimes were broken off and resumed a day or so later to accommodate the needs of the patient and the service demands of the facility. Hospital interviews averaged 40–50 minutes, although some approached 75–90 minutes. Interviews at 6 months, 1 year, and 20 months were longer, on average, and ranged from 60 to 150 minutes in length. Data management procedures

Interviews were transcribed by a professional transcription service, reviewed by the interviewers for accuracy and completeness, and subsequently entered into the database of QSR-NUD*IST (Qualitative Solutions & Research Pty Ltd., Melbourne Victoria Australia, ACN 006 357 213), a software program used to expedite storage and retrieval of information and to facilitate qualitative analysis. An indexing (coding) system resembling a “tree” was developed, based upon current conceptualizations of the interactions between the components of the ICIDH2 model. The major branches of the index system included (a) disablement components of body function and structure, activity, and participation; (b) the contextual factors of the environment and person; and (c) QOL. Each major branch in the index system was subdivided into smaller branches (subcategories) and twigs (nodes). For example, the QOL component of the index tree included four smaller branches: (a) definitions, (b) standards of comparison (e.g., expectations, aspirations), (c) self-ratings of QOL, and (d) subjective reactions to life situations. Most of these branches were subdivided into twigs. Altogether, there were 76 nodes at which narrative text could be indexed. The constant comparative method35 was


used to compare and contrast coded text within and across interviews. This method requires investigators to move dialectically back and forth between data, concepts, and inferences. To ensure uniformity in coding and comprehensiveness in qualitative analysis, the researchers met frequently to clarify, refine, and standardize coding procedures and to discuss and share products of qualitative analysis. These sessions enabled them to gain experience drawing inferences from data and to resolve differences in interpretation through discussion. During each interview, participants were asked to rate their QOL, in whatever way or using whatever scale they wished to use. The authors used the answer and other interview information to “translate” the subjective QOL rating to a standard one. The procedures used to transpose nonnumeric and numeric data to a scale score were those used in an earlier qualitative study of QOL after SCI and are described elsewhere.14,15 Results Table 1 provides clinical and demographic information on the six nursing home participants. These data were obtained first-hand from interviews and from review of the patients’ medical records. Five of the six participants had sustained tetraplegic injuries. The majority had acquired their injuries from falls. Violence and/or substance abuse were significant etiologic factors. All participants had one or more chronic medical conditions for which continued treatment and supervision were needed. Only two individuals had private health insurance. Biographical information, provided by the nursing home group and supplemented by data abstracted from medical records, gives

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an expanded social context within which to understand and interpret their experiences. Most participants did not have many positive or stable connections with family members. Four had never been married, and none currently had a spouse, partner, or parent(s) who could provide long-term caregiver services. Five had histories of substance abuse, usually alcohol and/or cocaine. Only one was employed at the time of injury and that individual was working part-time. At the time of injury, all but one had been living alone in apartments or homes that they did not own. The discharge disposition and subsequent destinations of our nursing home residents are depicted in Table 2. The pattern that emerges is striking: multiple moves from one nursing home to another, punctuated by repeat hospitalizations for SCI complications. Since discharge from the rehabilitation facility, the six participants had been transferred 15 times to 13 different nursing homes. Among the six, there were 21 hospital readmissions. The most frequent self-reported reasons for readmission were pressure ulcers, urinary tract infections, and pneumonia; some of these conditions resulted in systemic infections that required IV therapy and/or skin grafting. For the three individuals with the most frequent hospitalizations (CS, PF, LM), episodes of care lasted weeks and more than one hospital provided treatment over the course of several months. The overall pattern was one of instability, both in the individual’s immediate living environment and in his or her pattern of recovery and continuity of medical care. Disruptions in physical location were frequently driven by medical necessity; three participants (MW, CS, PF) used a return to the hospital to leverage a more personally compatible

Demographics

Caucasian female Age at injury: 35 B.S. degree Never married Medical disability

Caucasian male Age: 27 Some college Never married Hair stylist Medical disability

Caucasian male Age at injury: 53 HS graduate Never married Medical disability

Patient

LM

CS

MW

Fall: alcoholrelated C5, ASIA D LOS: 72 days

Fall: violencerelated C4-5, ASIA A LOS: 73 days

MVA C5, ASIA A LOSa: 86 days

Clinical information

Rheumatoid arthritis since childhood. Right knee reconstruction following an injury while serving in the military.

Depression. Anxiety attacks. Several prior suicide attempts. Multiple psychiatric diagnoses with hospitalizations. Ethanol abuse. IV drug use. Heart condition. Selfreport of Klinefelter’s syndrome. “Taking female hormones.”

Depression with several psychiatric hospitalizations. Family hx of Huntington’s chorea. Previous back injury.

Medical/psychiatric history and concurrent medical conditions

Table 1. Descriptive data on nursing home participants

Lived alone in private home. Conflict with some family members over ownership and occupancy of house. House is currently being probated. Military pension. SSI for prior medical disability. One brother has “stolen” pension and SSI checks. Two brothers are supportive.

Lived alone in apartment. Selfdescribed cross dresser and homosexual. Living “as a woman” at time of injury. Parents deceased. Estranged from brother and stepfather. Minimal contact with sister. SSI for prior medical disability.

Lived alone in basement apartment. No family. Lived in foster homes since age 16. One friend is her legal guardian. SSI for prior medical disability.

Personal/social history

CHAMPUS Medicaid

Medicaid

AAA Medicaid

Insurance/ sponsorship

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Black male Age at injury: 28 Eleventh grade Never married Part time: cook

Black male Age at injury: 44 Ninth grade Divorced Unemployed

CA

PF

GSW T6, ASIA A LOS: 43 days

Fall: violencerelated C6, ASIA A LOS: 80 days

Fall: alcoholrelated C6, ASIA B LOS: 62 days

Polysubstance abuse (cocaine and alcohol). Major depressive disorder. Mild cognitive impairment.

Treated for alcohol withdrawal post SCI. Right eye blindness secondary to past trauma. Hx of seizures and atrial fibrillation. Sacral decubitus ulcer. Osteomyelitis of sacrum. Depression. Polysubstance abuse.

Diabetes mellitus. Hx of osteomyelitis of spine (lumbar). Endocarditis with mitral valve replacement. Ethanol abuse and IV drug use (heroin).

Living with girlfriend at time of injury in vacant house of deceased mother. House had no electricity or heat. Contentious relationships with siblings. Two children live out of state and have had some contact.

Lived with mother at time of injury. Has six children who live with their mothers. Supportive relationships with own mother, father, siblings, and new girlfriend.

Lived alone in apartment. Four adult children. At injury was living with sister temporarily after recent cardiac surgery. Sister refused to resume care for brother post SCI discharge. Four brothers were victims of homicides.

Medicaid

Medicaid

Medicaid

a

Note: MVA = motor vehicle accident; hx = history; SSI = Supplemental Security Income; AAA = Automobile Association of America; GSW = gunshot wound. Length of stay (LOS) was calculated from date of injury through day of discharge from the inpatient rehabilitation facility.

Black male Age at injury: 54 GED Divorced Unemployed

CJ

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→ → → N/A N/A

→

At 20-month interview

Note: Superscripts for hospitals and nursing homes identify unique facilities within participants; however, the same superscript does not indicate the same facility for different participants. NH = nursing home; H = community-based general hospital; Rehab = second inpatient rehabilitation admission; VA = Veterans Administration Hospital; N/A = not applicable (participant has not yet reached the time point for interview).

1

→ NH → Motel → VA → NH → H1 → NH1 → → H2 → H3 →H4 → H3

→ NH4 → H3

H1→ NH1 → H1 → NH2 → H1 → NH3 → H2 Motel → Private Home → Rehab NH1 NH1 → NH2 → NH1→ H1 → NH2

CS

MW CJ CA PF

→ H1 → NH2 → H1 → NH2

NH1

LM → NH5 → H2 → NH3 → → → NH2

→ H1 → NH2 → H2 → NH2 → H2 → NH2→H1→ NH2 → H1 → NH2

From 6-month to 12-month interview

From in-patient rehabilitation discharge to 6-month interview

Patient

2

From 12-month to 20-month interview

Discharge disposition and subsequent destinations

Table 2.

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nursing home environment. The account of one participant (PF) is described in the following: And I got sick over there and they sent me to______Hospital, then _____sent me over here [to this nursing home] ‘cause I didn’t want to go back over to that one. . . . [T]he bedsores had got so bad that . . . my whole body was infected. They waited . . . so long to send me there [the hospital] and my whole body was infected with some kind of gangrene or something. QOL

During the early interviews with patients, there was a profound inability to make enough sense of the injury experience and its ramifications to put a label or numeric rating on their QOL. By the second or third hospital interview in the injury-to-initial rehabilitation sequence, most participants were able to provide responses to questions on QOL that were more easily interpreted. As indicated previously, most of the participants who were eventually discharged to a nursing home had cervical injuries, and the old familiar benchmarks of the “good life”—a nice job, a comfortable place to live, and a little money—were now “past tense” (as CJ put it) and no longer relevant. In many respects, the determinants and indicators of QOL had become reduced to body functions. Going to the bathroom on your own. Not having to wear a diaper. Being able to take a shower every day. Being able to get your hair washed more than twice a month. That is important stuff to me. (LM) Am I going to be able to . . . go to the bathroom without somebody standing there? You know, am I going to wear a bag, or am I going to have to, you know, do this or that? That is what I am thinking about as quality of life. (MW)

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When asked to rate the quality of their life, most patients offered words connoting cognitive or affective judgments of QOL (“great,” “not really all that great,” “crappy,” “horrific”) or numbers on an imaginary scale. All who volunteered numeric ratings used a 1–10 or 1–100 scale. Figure 1 depicts the QOL rating of nursing home participants (translated to our standard scale) across interviews. Although the six trajectories were quite variable, there were two discernible trends in the data: QOL was, for the most part, at a low point soon after injury but improved somewhat or quite a bit during the rehabilitation stay. In general, there was a decline in self-reported QOL by the 6-month interview (or, as in the case of MW, after transfer to the first nursing home) that was followed by a gradual or considerable improvement in well-being by the 12-month or 20-month interview. Although most patients were uncertain about the impact SCI would have on their lives, they felt that, as a result of intensive therapy in the inpatient rehabilitation setting, they were getting “stronger” and were making visible progress (CS, MW, CJ, CA). Most were grateful for the encouragement provided by their therapists (CJ, MW, CS, CA), but their hopes were tempered by the additional uncertainties. The majority had some idea of what living in a nursing home was like. Most dreaded the prospect of nursing home placement but sensed it was inevitable due to the seriousness of their injuries and their lack of social and financial resources. The reality of the nursing home experience confirmed their worst fears. By 20 months postinjury, CS, who was the most severely disabled, had already spent time in five different nursing homes and, according to him, all were “ghetto mousetraps.”


Figure 1. Quality of life trajectory across interviews.

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“Gloomy,” “creepy,” “depressing,” and “frightening” were other descriptors used by participants to paint a picture of what it was like to live in a nursing home. At 6 months, CJ stated, “I was told that all nursing homes are not bad. That may be so, but I can’t find one . . . . I never seen a nice nursing home.” The majority of nursing homes (9 of 13) were located within the city limits. Two were situated farther out in an adjacent county. The remaining two were located approximately 100 miles away. Nursing homes varied in size, but the typical nursing home was an inner-city 100+ bed facility with partial Medicare certification and full certification by Medicaid. The two nursing homes in the suburban area had a dedicated therapy room and a staff to supervise “restorative” therapy. Otherwise, if therapy was available, it was provided on a very limited basis and then only by visiting therapists. As described later, the physical environment, social atmosphere of the nursing home, and the institutional routines and services delivered within it defined the daily living experiences of the residents with SCI. Physical environment

There were few evaluative statements made by participants about the overall physical features, conditions, or design of the nursing homes in which they lived or had lived. Comments that surfaced during interviews with two participants (MW and LM) focused on characteristics that, in their estimation, described the very “worst” or “best” nursing home. At the 1-year interview, MW recalled that his first nursing home, an innercity facility, was a “real hell-hole.” There were only two bathtubs on the entire floor, no showers, and two toilets on each end of the building, and “the one toilet was broke from

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the time I got there, and it was still broke by the time I left.” He described his second nursing home, a suburban location, as “fabulous…like a dang hospital” where you could go out and “set out in front of the building like you were back in a Kentucky backwoods.” According to MW and LM the “best” nursing homes also provided facilities, equipment, and opportunities where residents could exercise on their own, cook a favorite meal, and/or access public spaces in the community for shopping, dining out, and entertainment. No other nursing home resident in our study mentioned that such opportunities were available. The only time two residents (CS and PF) left the nursing home was in transit between the nursing home and the hospital. Our nursing home residents spent most of their day in a room they shared with two or three others. In the room, there was space for a chair and a nightstand. Beds were separated by curtains or nothing at all. Some rooms had a small attached bathroom with a toilet and sink. Bathing and shower facilities were located in a separate area of the nursing home. A small storage cupboard or closet was usually available for each resident to keep clothing and personal belongings. There were few complaints about the physical aspects of their personal living quarters. There was one exception: the storage area in patients’ rooms was not secure, and three residents (MW, CS, CA) had clothing, money, and other personal items stolen. CA (6 months) protected his turf by staying in his room most of the day and by making sure his clothes didn’t go down to the laundry. He no longer went home on the weekend as he “had a lot of things tooken from me, since I’ve been here.” Virtually all of the remaining references to

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the environment pointed to the social atmosphere within the nursing home and to the institutional routines and practices of the nursing home that impacted on daily life. Simply put, the general social environment, the attitudes of staff, and the manner in which services were delivered dictated the boundaries of privacy, personal mobility, and social opportunity. These boundaries, in turn, impacted the level of life satisfaction reported by nursing home residents. Social and attitudinal environment

Perhaps the single most significant influence on residents’ QOL was the social and attitudinal environment of the nursing home. In some respects, the nursing home can be viewed as a total institution. According to Goffman,36 a total institution is one in which residents are confined to a setting not of their choosing, isolated from others, and manipulated by staff who control all spheres of daily life. Most of our participants avoided socializing with other residents, in large part because they had nothing in common with the others who were, on average, much older and often had severe cognitive and/or emotional impairments as well. “All I can say is that nursing homes are hellish,” remarked CS (6 months), “They’re not for young people at all. They’re basically warehouses to store people who are about to die soon.” Even older nursing home participants recognized the social inappropriateness of their situation. At the 6-month interview, CJ, who was 54, stated: “Well, you know, people who are in nursing homes, they are probably like people who are dying. . . . That’s why I have nobody to talk to.”

It was not just the “very old” that made life unbearable. According to MW, “They had psychiatric patients mixed in with the regular patients. They were whoopin’ and hollerin’, running up and down the hallways all hours of the night, in your own rooms.” Similar statements were made by CJ and by LM, a woman with high-level tetraplegia who was physically unable to fend off the advances of two brain-injured male residents in her facility: They, ah…we’re talking head injured. One just got fired from _____ because of making sexual advances towards people. . . . And then there’s another guy who can’t talk but he likes to touch females. You know, always. And everybody just backs away or tells them…and I’ve told them not to touch me. He still does. So I stay down here [in my own room] most of the time.

On a day-to-day basis, nursing home residents were more likely to spend their time interacting with staff. There was a great hunger on the part of more articulate residents for some kind of normalcy and connection with the outside world, if only through the staff. This was obvious to the researchers in their interviews with participants and in the observations they made of staff–resident interactions. Residents welcomed the seemingly trivial conversations with staff that typified ordinary social intercourse, and most reported favorable or very favorable experiences with at least one staff member. Yet, relationships with staff were hardly ordinary, mutual, or reciprocal. Residents were well aware of their dependence on nursing home staff and that they were the least powerful members in the social hierarchy. They were very mindful of the fact that staff could control their lives through a system of rewards and punishment.


When asked about staff–resident relationships, LM remarked that one staff person was the only individual in the entire nursing home that she liked to talk to, but it annoyed her that she would just walk into her room, at anytime at all. While “it is sometimes nice to have company . . . you just want to have the option of saying, ‘No, you can’t come in.’” Thus, it was a difficult balance to maintain at times, even for those who had developed genuine friendships with staff. All were cautious and did not want to “rock the boat” or “complain too much.” They were careful not to alienate staff and, to the extent possible, put some effort into recruiting them as personal allies. Institutional context of service provision

Life in the nursing home was predictable for our participants, but what happened to them during the course of the day was not under their control. Some residents were not out of bed until early afternoon. Once out of bed, they often sat in their wheelchairs for the remainder of the day. CJ at 6 months remarked that in his former nursing home he would “sit in that chair from sunup to sundown during the day and that gets kind of rough.” Referring to his first nursing home, MW (6 months) reported that it was not uncommon for nursing home staff to start “putting people in bed at six o’clock, even if you didn’t want to go to bed.” Interviews revealed a fairly high level of dissatisfaction with the amount and kind of services available and the manner in which they were delivered. These concerns are itemized in the following: 1. The failure of staff to respond to call buzzers was the single most frequent complaint identified by our residents with SCI. There was a suspicion that their calls for assistance went inten-

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tionally unheeded and that “insufficient staff” was not the real reason why. LM (6 months) was especially frustrated because a delayed response “was more the rule” in her facility than the exception, leading her to conclude she “had no control” and was “at the mercy of everybody around me.” 2. Insufficient attention to personal privacy was another common complaint. LM was particularly concerned that staff were not careful enough to ensure that she was not left exposed to others’ view during toileting and bathing. Given her high-level injury, she was unable to physically cover herself and thus was entirely dependent on staff. Like last night, I was given a shower. They got me the diaper on and my shirt on, and got the Hoyer lift swing under me, and she went out into the hallway . . . but left the door open. . . . So they get me up on the lift, and she’s pulling me and I’m right at the doorway and I said, “You mind covering me up?” And she just like jumped down my throat.

3. Routine self-care activities were provided haphazardly, irregularly, or not at all. The maintenance of regular personal hygiene practices was enormously important to all residents. CA remarked, “I had a problem getting washed up. . . always, it was like one o’clock or twelve o’clock . . . and yesterday I didn’t get washed up ‘til two o’clock.” Those who were used to a daily shower had to adjust to a weekly or less frequent bathing schedule. PF saw his schedule reduced from daily (at the rehabilitation hospital) to weekly, “if he was lucky.” Regular

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tooth brushing and hair washing were problematic for most residents. PF stated, “If . . . I persist in asking them, they brush my teeth maybe a couple of times a week.” He and others had to remind, plead with, or cajole staff to provide basic personal hygiene services on a daily basis. 4. Nursing home staff failed to deliver in a timely fashion the specialized care that our SCI residents needed. For example, bladder and bowel management routines established during rehabilitation fell by the wayside and had virtually disappeared for five of the six study participants by the 6-month interview. CS at 6 months remarked, “They were supposed to be straight cathing me every six hours and they’d do it maybe once a day.” CA reported, “They weren’t turning me right.” The level of care our participants received likely contributed to their declining health. After several weeks in the nursing home environment, their medical conditions deteriorated dramatically, as evidenced by the frequency of SCI complications and rehospitalizations that were described earlier. 5. Except for MW, nursing home residents were very concerned about the lack of physical and occupational therapy services and compared nursing home life negatively to their recent and positive rehabilitation experience. At best, they received range-of-motion exercises in their rooms. In retrospect, they were openly critical of social workers, case managers, and other hospital staff involved in their treatment and rehabilitation who had painted a picture prior to their nursing

home admission that did not square with the reality of their nursing home experience. One participant (CS) accused his case manager of “complete lies” about the services he could expect at his fourth nursing home: . . . and she [case manager] said, “They have a gym there. And there is people there your own age so you’ll be getting physical therapy and it’s a nice place. You’ll be all right.” [Reflecting on the case manager’s words] No extra funding for physical therapy. That was a lie. No people my age. No gym there. The place doesn’t even have a gym. That was a lie. So I went there and I just rotted.

The source of his frustration (and one that was shared by CJ, CA, LM, and PF) was the perception that functional gains made during rehabilitation were quickly being lost. CJ (6 months) summed up the feelings expressed by the others, “I need more therapy. I feel like I’m wasting time.” 6. A related concern was the difficulty in obtaining durable medical equipment, such as a wheelchair deemed critical for day-to-day living. In the rehabilitation facility, PF was independently mobile using a manual wheelchair. He has not used a wheelchair since he left the rehabilitation hospital. At the 6month interview, he reported that “I don’t have a wheelchair [of my own]. They just got that other kind of chair [a transport chair], you know, where you get in it and they just wheel you around.” At 20 months postinjury, CS reported that a wheelchair company had finally fitted him for a motorized wheelchair, but that was over 4 months ago. He had not seen the chair and had no idea if,


when, or where his wheelchair was or would be delivered. And CJ (at 6 months) complained that his insurance would not cover items if he were discharged to a nursing home. If I was going home, they would have gave me a bed, chair, everything. Since I came here, nothing. That’s right! That’s the insurance company for you. They denied all of it because I was going into a nursing home so they denied it.

7. Perhaps most disconcerting were the allegations of verbal and physical abuse by staff. CS (1 year) “personally witnessed them chasing other patients around with wire coat hangers. I could hear them hitting other patients.” CA could hear staff verbally abusing other residents: “They think people don’t hear them. They talk . . . they cuss at them and talk to them any kind of way.” At 6 months, CA said nursing home staff generally “didn’t mess” with him. In the 12-month interview, he gave a graphic account of an altercation with a male nurse. And then the next night . . . he came in and I knew he was intoxicated, in the influence of alcohol. . . . [a]nd I asked him about my medicine. So he started, you know, going off. . . . And I says, “Man, you ain’t got to go through all that. Only thing I need you to do for me is get my medication.” . . . Okay, so he left, went down, came back, got over my bed. On my bed or like over the bed or whatever, and he got the hand like this in my face. And I was cussing him out and everything, real bad, you know. . . . “Get your hands out my face!” I kept pushing his hand, slapping his hand out my face.

Although CA had a cervical injury (C6), he was able to physically and

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verbally fend off the unwelcome advances of the nursing home worker. CS, who had a C4 injury, was not so lucky; he reported several incidents of physical abuse. In one incident, he alleged that nursing home staff placed his bed near an open window and the next morning he awoke with a high fever that, according to him, developed into pneumonia and required hospitalization. He also mentioned “one nurse there even slapped me.” The last interview with CS (20 months) was conducted over the course of four visits to the hospital where he was being treated for pneumonia and a collapsed lung. During the first interview that took place on the critical care unit, he recounted: I was assaulted by one of the [long pause] aides. . . . It’s hard to explain. It wasn’t like a normal [long pause] whack. It was just like, oh. [long pause] She kept trying to stick a finger down my throat [long pause] and choke me.

Discussion Theoretical implications

Research has indicated that the correlates of overall life satisfaction include health, income, recreational outlets, interpersonal support, and safety.18–20 Researchers of QOL would hardly think of investigating whether privacy, control over one’s own body, and the ability to leave one’s home affect life satisfaction ratings, because they are so basic and not lacking in the lives of most people. However, for persons with an SCI, these issues are problematic: They have restrictions in the opportunity to move around, to perform productive work, to have children, and to do many

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other things most people take for granted. If such abilities and opportunities are in question for the average person with an SCI, how much more are they in question for those who because of severe injury, medical needs, and lack of funds and a support system end up living in a nursing home? Lack of economic and social power is the reason the six participants were discharged to a nursing home rather than a community residence, and the same lack of power leaves them at the mercy of nursing home routines and nursing home staff. Even though every person with high tetraplegia is dependent on others for provision of basic services, from brushing teeth to catheterization, those living in the community are likely to be assisted by family or by attendants whom they control, at least to some degree. They live in their “own” home, surrounded by their own possessions, and have the freedom to contact and receive friends. Those in nursing homes share a room with others, have minimal possessions that may disappear at any time, and have no control over when, by whom, or how care will be provided. In the case of our participants, substandard care in combination with lack of therapy or even lack of an opportunity to exercise on their own resulted in a quick decline in their functional and health status. The vicious circle of physical and psychological decline started to undermine hope. All these patients had been very pessimistic as to the future during their acute medical admission, but they had gained strength and skills and hope during rehabilitation, as the QOL ratings (Fig. 1) suggest. The early nursing home interviews indicate that even after the disappointment of being discharged to a nursing home instead of a community residence, the participants still had expectations

(though largely unmet) that they would be able to continue living at least with an orientation toward the outside world, for example, trips out of the nursing home, visitors from the outside, or just sitting in front of the building and seeing the world go by. The lack of transportation offered by most of the homes and the lack of even a wheelchair of one’s own dashed those hopes. With the lack of connection to the outside world, the milieu of the nursing home became more important and more disappointing. It is not easy to summarize in a few words how our participants felt about living in a nursing home. Adjusting to life after SCI was a difficult task, and day-to-day living in a nursing home was, by and large, a very negative experience, especially for those who spent all of their time in an inner-city nursing home. In taking a second look at the QOL trajectories depicted in Figure 1, we note that there has been a gradual improvement in selfreported QOL since first admission to a nursing home. The living situation has stabilized for most of our nursing home residents. Most feel they are now living in a “better place.” Given the circumstances the participants described, it is surprising that the QOL ratings on our 1–10 scale were as high as they were (Fig. 1). Aside from issues in the “translation” of the participants’ statements to a standard scale, two explanations may be offered: adaptation level theory, and the strong relationship between life satisfaction and other QOL assessments and personality. Adaptation level theory holds that people get used to good outcomes and circumstances and need increasingly high levels to achieve the same level of well-being.37 However, the relativity of “acceptable levels” also works with respect to deteriorating outcomes and circum-


stances: What was disappointing yesterday may be acceptable today, because today’s and tomorrow’s circumstances may be even worse. Acceptance of loss theory,23 illness or disability-initiated response shift theory,38 and other theories all have a similar thesis: Humans scale down their expectations or change their yardsticks rather than continue living with an otherwise unacceptable gap between what they want out of life and what they are actually getting. For instance, Ulmer’s10 participants had on their wish list daily physical therapy, opportunities for privacy, and chances to get out of the nursing home and interact with the world. Our participants also wanted more therapy, more privacy, and a chance to go places in the community. Those in the inner-city nursing homes would have been happy with an extra bath a week, more frequent tooth brushing and shampoos, and not being disturbed at night by other patients with psychiatric diagnoses. Research has shown that judgment of QOL is strongly linked to such personality traits as extroversion and optimism.39–42 Subjective well-being levels tend to be fairly constant over life; any “dips” caused by events such as a divorce or a spinal injury soon disappear when the “normal” view of the world reasserts itself.43,44 That may explain why not all of our participants rated their QOL as 1 or 2 as did CS. Clinical implications

Given the frequency with which the participants were rehospitalized after discharge from the hospital, we feel that rehabilitation providers should pay closer attention to the issue of medical and psychological readiness for discharge.45 Our nursing home residents had many co-morbidities to contend with in

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addition to their SCI. Given current trends in managed care, particular attention should be paid to the relationship between shortened length of stay (LOS) and subsequent rehospitalizations for SCI complications. Shortened LOS also means that structured inpatient education programs designed to impart self-care information and facilitate SCI management strategies are presented in a very compressed time frame. Patients do not have time to process complex information or to learn problem-solving and advocacy skills. The issue of patient preparedness is even more important for those being discharged to a nursing home. The participants, at least early in their nursing home experience, were not always able to articulate what they needed from staff and clearly were not in a position to demand “good” care or to extract compliance from staff. Rehabilitation providers need to inform prospective residents about nursing home routines, resources, and services. They need to impress upon them that it is essential to manage their own care and to be assertive when they cannot do so. Greater attention must be paid to the training of nursing home staff. From the point of view of the study participants, nursing home staff did not provide quality SCI care. Staff did not anticipate potential SCI problems and were not prepared to handle the medical complications and emergencies that arose. This is not necessarily surprising; even the largest nursing homes are unlikely to admit a person with SCI more than once in a while. Combined with the large turnover rate in nursing home staff, SCI expertise is not to be expected. But if the national trend toward increased numbers of discharges to nursing homes continues, the issue of staff prepared-

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ness is an urgent one that must be addressed creatively by rehabilitation providers. Future directions

This investigation is still ongoing. Two of our participants have yet to reach the 20month interview mark. We anticipate following these six participants through 30 months postinjury, and we will continue to document their experiences living with SCI in or out of a nursing home. We have not yet begun to formally analyze data provided by the study participants who returned to a private dwelling after discharge from the rehabilitation facility. One objective of future analysis is to examine personal experiences and QOL outcomes for this subset of study participants. We also want to match the two groups (nursing home vs.

private residence) on relevant clinical and sociodemographic characteristics and then make comparisons with respect to selected QOL outcomes, such as mortality, SCI complications, rehospitalizations, functional status, and, most important, satisfaction with life. Such a comparison may help clarify the ways in which critical elements in the two environments impact on QOL. Acknowledgments Preparation of this manuscript was made possible with assistance from grant H133G990219 from the National Institute on Disability and Rehabilitation Research, Office of Special Education and Rehabilitative Services, US Department of Education, Washington, DC.

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