Perspectives from patients who reside in nursing homes can inform administrators and providers about the patient experience in long-term care. In a study of preferences for care in the nursing home or hospital should an acute change in condition occur, nursing home residents offered spontaneous descriptions of their experiences in the nursing home and during their prior hospital stays. This article offers background information about nursing home reform and standards, and contemporary reports on the patient experience in nursing homes. Methods, results, and discussion of the study findings will inform readers specifically about the analysis of the narrative data as it relates to the patient experience. Positive and negative aspects of nursing home patient experiences are discussed and compared to hospital patient experiences. Both settings were both praised and strongly criticized. Many concerns identified as patients discussed their experiences can be remedied by the owners and administrators of these facilities.
Key words: Nursing home care, hospital care, patient experience, understaffing, registered nurses, nursing home abuses, care needs, nursing home residents, long-term care
In response to increasingly rapid discharges from hospitals before many patients are ready to return home, nursing homes (NHs) have evolved into multilevel care facilities. They may offer subacute, rehabilitation, hospice, and other services in addition to traditional residential (long-term) care. This evolution into facilities that provide multiple levels of care has attracted regulatory attention and pressure to keep costs under control while maintaining or improving the quality of care.
Of recent interest particularly are the number of hospital readmissions from NHs which generate costs of as much as 14.3 billion dollars a year and put the admitted resident at increased risk... Of recent interest particularly are the number of hospital readmissions from NHs which generate costs of as much as 14.3 billion dollars a year (Levinson, 2013) and put the admitted resident at increased risk for nosocomial infections, falls, skin breakdown, and other untoward effects (Ouslander, et al., 2010). Interest in this area was the impetus for a study of NH resident, family member, and provider perspectives about these readmissions (Tappen et al., 2014). This study unexpectedly generated a wealth of information from residents regarding their experiences in the NH, many comparing it with their hospital stay. This article offers background information about nursing home reform and standards, and contemporary reports on the patient experience in nursing homes. Methods, results, and discussion of the study findings will inform readers specifically about the analysis of narrative data as it relates to the patient experience, with hope to inform strategies to remedy the concerns expressed.
A Look Back
In the 1970s, there was a series of scandals about nursing home care in the United States... the vast majority were at best mediocre, at worst dreadful. In the 1970s, there was a series of scandals about nursing home care in the United States (US), exemplified by Mary Adelaide Mendelson’s book, Tender Loving Greed (1974). In her book, Mendelson described poor care, emaciated patients, kickbacks to doctors, and financial manipulation by the owners of these “dank institutions” (p. 205). Robert Butler (1975) did not mince words either, calling NHs “houses of death” but “lively” businesses (p. 260) with few or no nurses and hardly qualifying as a home. This was a time of doctors making “gang visits” of 30 or 40 people at a time, the use of chemical strait-jackets and few or no nurses (Butler, 1975; Mendelson, 1974). Although there were some excellent NHs, the vast majority were at best mediocre, at worst dreadful (Mendelson, 1974).
For a closer look at what happened day after day within the walls of a NH, Jaber Gubrium (1975) spent several months at a NH he called “Murray Manor.” As a participant-observer, he engaged in a wide variety of tasks from helping with toileting to sitting in on staff meetings. He found the instances of anger, humiliation, and despair decried by others. An example he gave was the aides’ habit of putting residents still wet and soiled into their wheelchairs when they were in a rush to get everyone to the dining room on time. He also found moments of love and hope. While the more functional residents were able to socialize and form close relationships with each other, those who were entirely dependent upon the aides for carrying out the basic tasks of dressing, eating, and grooming (ADLs) were described as appearing uncombed, "tastelessly dressed, wan, gray, and toothless" (Gubrium, 1975, p. 140).
The Institute of Medicine’s Committee on Nursing Home Regulation issued a set of recommendations to improve nursing home care and sustain residents’ rights and quality of life... These scandals energized efforts to reform NH care. The Institute of Medicine’s Committee on Nursing Home Regulation issued a set of recommendations to improve nursing home care and sustain residents’ rights and quality of life (Noelker & Browdie, 2014) that, along with General Accounting Office (GAO) recommendations, were eventually incorporated into the Nursing Home Reform Act known as OBRA ’87 (Omnibus Budget Reconciliation Act of 1987). Among the sweeping changes called for was a change from paper compliance with nursing home standards to actual observation of the care NH residents received during onsite surveys and real enforcement of these standards (Grassley, 1999; Noelker & Browdie, 2014). Data from over 5,000 NHs showed a significant increase in staffing levels from 1987 (the year OBRA ’87 was enacted) to 1993 as well as a decrease in pressure ulcers, use of restraints, and use of urinary catheters. Those NHs that had had substandard staffing levels prior to OBRA ‘87 saw an increase in quality of care as they increased registered nurse staffing (Zhang & Grabowski, 2004).
Contemporary Reports on the Patient Experience in NHs
Feeling secure and recognized as an individual were found to be especially important in another group of eight residents interviewed in a facility in Iceland. Most previous studies of the experience of NH residents have involved relatively small numbers of residents. In Sweden, 13 newly admitted residents, 10 family members, and 11 contact persons were asked about the new residents’ daily life in the NH. Most reported that they were satisfied with their new surroundings, felt safer and found the staff members to be both nice and competent. However, they also had expected other residents to be healthier than they were and wanted more opportunities for socialization than were available (Andersson et al., 2007). Feeling secure and recognized as an individual were found to be especially important in another group of eight residents interviewed in a facility in Iceland (Hjaltadóttir & Gústafsdóttir, 2007).
A Taiwanese study of 18 NH residents was done to identify residents’ perspectives on their needs (Chuang Abbey, Yeh, Tseng, & Liu, 2015). Quite a wide range of needs were identified by the residents including a clean, quiet environment, opportunities to be outdoors, and hot meals, which the authors note are especially important in the Chinese culture. The residents also valued caring, respectful attitudes on the part of the caregiving staff. Autonomy (being able to make choices/decisions), security (staff respond promptly when called), and privacy were also important to the residents interviewed.
Some of the recently published studies of patient experiences in NHs have focused solely on end-of-life care. Gjerberg, Lillemoen, Førde, and Pedersen found that very few of the 35 residents and 33 family members interviewed had had conversations with staff about their preferences for end-of-life care. Most, however, did have a high level of trust in the staff (Gjerberg et al., 2015). A synthesis of 14 studies (10 from the US) of end-of-life care in NHs suggested that family members in particular had concerns about the staffing levels, communication between members of the nursing staff and the limited availability of physicians. They also expressed frustration over what the authors called “the missing doctor” (Fosse, Schaufel, Ruths, & Malterud, 2014, p. 8).
Some of these issues arose in resident interviews reported in the present study as well. The next sections describe the study methods and results.
The residents’ descriptions of their experiences in the NH and comparisons with their stay in the hospital were obtained in a larger mixed methods study of their preferences regarding staying in the NH or being transferred to the hospital should an acute change in their condition occur. These descriptions were given spontaneously in response to a question asking them to explain why they preferred one choice over the other (NH or hospital). Residents were approached by staff to ascertain their willingness to participate prior to talking with a member of the research team. Potential participants were screened for dementia using the Mini-Cog screening tool (Borson, Scanlan, Chen, & Ganguli, 2003). The purpose of the study was explained to participants before written consent was obtained, in accordance with the protocol approved by the university committee for the protection of human subjects.
Ninety six residents from 19 NHs were interviewed. Six of these NHs were not-for-profit; two had religious affiliations. The average daily census was 123 with a range of 52 to 181. Most offered subacute as well as long-term care. The average number of subacute patients was 46, with a range of 15 to 121 in those NHs that offered subacute care. Sixteen of the NHs offered hospice care to an average of 10 residents each. Across these 19 NHs, administrators estimated that 30% to 100% of residents had advance directives in place.
Of the 96 residents interviewed, 69 (72%) were women, 27 (28%) were men. Their ages ranged from 47 to 99 years with an average of 77 years. Length of stay in the NH was similarly variable, ranging from 2 days to 8,130 days, with an average of 766. Seventy-five percent were long-stay residents, 25% were short stay. Most of the short-stay residents identified themselves as “patients” while those who were long-stay typically called themselves “residents,” the term used in this article. Seventy-five (79%) of these residents were born in the United States. Most were European American (72 residents) but 8% were African American, 9% Hispanic and 6% Afro-Caribbean. Religion varied more: 40% Protestant, 28% Catholic, 23% Jewish, 2% Muslim, and the remainder declared no religious affiliation.
Most interviews were conducted at the bedside but some residents preferred to talk in the dining room or outside patio. Interviews were conducted by members of the investigative team. Staff were not present during the interview but family members occasionally were. If the resident agreed, interviews were recorded; if the resident did not agree to recording, we took notes during the interview. Recordings and transcriptions were stored in locked files or on password protected computers. Participant names were removed from the transcripts used during analysis and replaced by an ID number to protect privacy and confidentiality.
Residents were asked the question, “If you became ill, would it be your preference to be treated here in the nursing home, or would you want to be sent to the hospital for treatment?” and then asked the follow-up questions, “What would affect your preference to stay in the nursing home or to go to the hospital? What would be most important to you in making this decision?” The spontaneous comments about their experiences in the NH and the hospital came in response to these follow-up questions.
Interview transcriptions were read by the author several times to gain appreciation of residents’ perspectives on their experiences in the NH and hospital. All references to these experiences were marked and coded as a comment about the NH, hospital, or both, and then coded as a positive, neutral, or negative comment. Categories within each of these were identified and themes generated from the patterns found. Quotes that characterized each theme were also noted (Miles, Huberman, & Saldaña, 2013).
The rigor of the research and trustworthiness of the results were evaluated in several ways. Meyrick (2006) enunciated two principles for establishing rigor in qualitative research. Transparency is the clear disclosure of the research process employed which is done in this article. Systematicity is the consistency of the research processes employed. All members of the investigative team, led by the author, employed the same approach to potential participants, used the same interview questions and responses were transcribed by either the interviewer or a skilled transcriptionist. Transcribed data were reviewed by the interviewers for accuracy. Coding schemes were created by the team as a whole, coding was done by two research assistants, and intercoder reliability was calculated. The number of NHs involved and substantial number of residents interviewed lends credibility as does the peer debriefing that occurred with members of the team (Lincoln & Guba, 1985). Finally, a clear audit trail was created as the study was being conducted addressing the criterion of dependability of the research and the results reported (Tappen, 2016).
Of the 96 residents interviewed, 75 (78%) made spontaneous comments on either their NH experience, hospital stay or both. The remaining 21 (22%) did not include comments about either setting, focusing instead on their own needs or condition in their responses. In rare instances, a resident offered both negative and positive comments about one of these settings. Where relevant, this is noted.
Positive Aspects of the NH Experience
Residents found much to their liking in the NH... “They know me here,” said one, “and I know them.” Residents found much to their liking in the NH. The NH had become a familiar, comfortable place for many of them. “They know me here,” said one, “and I know them.” Staff were specifically described by seven participants as friendly, helpful, and responsive most of the time when asked for assistance. One resident remarked on “the warmth that is there” and that staff “have a feeling of concern” for the residents in their care and another remarked on their attentiveness, “they picked up right away how sick I was.” For many of the longer term residents, the NH had become their home and they were comfortable there (13 residents said this).
Residents commented on the wider range of activities allowed as compared to a hospital setting. “My roommate got to see her grandkids and her dogs,” one told us, “and it meant the world to her.” A long stay resident told us she did many things in the NH, “I just planted some flowers.” A number of them liked going to the dining room or cafeteria for lunch and dinner, an opportunity to be out of their room and to see other people. An involved administrator, cleanliness of the facility, and the lower cost compared to acute care were additional positive aspects of the NH experience mentioned.
Overall, it was clear that being in a NH could be a good experience. The transition from the hospital to the NH could be difficult, however. “When I first came here, I was in a panic, trying to get the attention of nurses who seemed to be saying ‘Nah…she’s fine.’ I thought, ‘Oh my God, they don’t care.’ [I] was so afraid. Later, the nurses were nice, they even encouraged me to go to the cafeteria for lunch and dinner” offered a resident who was initially frightened but gradually became comfortable in the NH. “I am happy here and I have been treated very well, have gotten the best care,“ said one resident. Declared another, “I have been treated like a king here.”
Negative Aspects of the NH Experience
Some of the residents were understanding as to why it sometimes took some time to get a response from the staff, one noting, “they work hard…you just have to be patient until they get to you.” They were also accepting of the fact that the “nurses can’t take care of everything” because “they are overworked here.” However, others reported that they were “not being taken care of promptly” and indicated they were aware that they were “not getting all the care [they] needed.” They described the NHs they were in as understaffed (8 said this) and the staff as underqualified (9 said this). “There is nobody to take care of you here” said one concerned resident. Another questioned how knowledgeable the staff were, guessing that some probably could not pass a licensing exam.
Several other residents reported incidents that distressed them... One felt very bad about what seemed to her to be the disappearance of another resident who had become a good friend saying, Several other residents reported incidents that distressed them. Those who had been in their NH for an extended period of time and were capable of doing so began to develop friendships among the staff and fellow residents. As a result, they cared deeply about what happened to a fellow resident. One felt very bad about what seemed to her to be the disappearance of another resident who had become a good friend saying, “The NH won’t tell me what happened to her. She was my closest friend. They took her away and she didn’t come back. They never talk about someone passing.”
Poor interpersonal skills (some would say a lack of caring) arose in other contexts as well. One resident reported “they treat me like a sack of potatoes. They do not give me time to speak and then they disappear. They treat me as if [I were] mentally retarded.” Several singled out the nursing assistants (CNAs), noting that the nurses were caring but the CNAs were not. “I am very friendly with the nurses,” said one, “not the CNAs. The CNAs don’t care much. The nurses do and they know what I need.”
Some CNAs were described as rude and/or rough with the residents. “Some are real rough,” said one resident. Another told us “the nursing staff don’t like me. A CNA was very rude to me so I slapped her.” This resident reported the rude staff members to NH administration. As a result of this difficulty, the resident was counseled on how to get along with the CNAs. The resident was not made aware of any counseling or reprimand the CNA may have received.
Positive Aspects of the Hospital Experience
Residents’ comments about their hospital stays were briefer but not fewer in number. On the positive side, responding residents noted that hospitals were better staffed, better equipped (4 mentioned this specifically), and could perform more complex diagnostic procedures and treatment (e.g., surgery, colonoscopies and intravenous therapies were mentioned; 6 mentioned this). “This is where they operate,” noted one resident. Hospitals, in other words, “provide care that cannot be provided in the NH.”
Several commented that hospitals could accomplish tasks such as laboratory tests faster than NHs. Not only were hospitals described as providing care more quickly, but also as accomplishing more and doing it more thoroughly (6 mentioned this). Several participants reported getting more attention in the hospital, noting that there would be someone there who could help. The assumed continued presence of doctors in the hospital was another positive aspect mentioned by several residents.
Some said they expected better care in the hospital and felt safer there. Some said they expected better care in the hospital and felt safer there. One summed up the positives this way: “I love the hospital.” Another added, “the food is better” in the hospital.
Negative Aspects of the Hospital Experience
In contrast to the resident who loved the hospital, another called it “the place I least like to go” and another said, “I will never go back there.” The care is described as less personal in the hospital. “You don’t get that attention in the hospital,” remarked one resident. Another thought that staff in the hospital “couldn’t care less” about their patients. Although many residents seemed to believe that they would see their own doctor in the hospital, one did complain of being “stuck with doctors I don’t know.”
The greatest fear seemed to be the risk of a hospital acquired infection which has received considerable attention in the media and, apparently, in the sharing of experiences among friends, families, and neighbors. There were also expressions of fear related to being in a hospital from 5 participants. One resident noted that hospitals are “getting a bad reputation…you are going to come out dead.” “You are going to get sick” in a hospital commented another resident. “I am really afraid of the hospital,” said one participant. The greatest fear seemed to be the risk of a hospital acquired infection which has received considerable attention in the media and, apparently, in the sharing of experiences among friends, families, and neighbors. None of the participants indicated they had heard this from staff members.
There was also a distressing incident reported by one resident. She noted, “In the ER, nobody would tell me anything or listen to me” (the resident asked them to call her sister). The resident told the interviewer that she knew from past experience that it was very difficult to find a vein to start an intravenous line. She wanted them to call her sister to corroborate what she was saying but they did not. She describes them holding her down, “sticking” her “13 times” and that she was “screaming and kicking.” “It was the worst nightmare,” she said.
Similar and Contrasting Experiences
On several points, both the NH and hospital were almost equally praised or criticized. Both received praise from several residents for the food they served. Both were praised for providing quality care but also criticized by others for the way care was provided. Staff were described as caring and noncaring. At least one NH and one hospital was considered, by the resident reporting, to be so poor that it should be closed.
Summary and Interpretive Themes
The importance of feeling secure, cared for, and cared about, are cross-cutting themes reflected in both the criticism and praise of NHs and hospitals from these residents. To summarize, NHs became familiar, comfortable places providing more personalized care for many residents. In NHs, rules were less rigid, activities available, and relationships with both staff and other residents could develop. The quote, “They know me here” illustrates the dominant positive theme.
Conversely, NHs were also characterized as understaffed and poorly equipped to provide prompt, comprehensive care. Some residents complained that they were not getting all the care that they needed and that the interpersonal skills of some staff members were poor. “You may have to wait” and “you may not get everything you want” were prominent negative themes.
Hospitals were described as better equipped, better staffed, able to respond more rapidly, and prepared to provide more complex care. The care was impersonal, but faster and more thorough. “Hospitals are the place to be when you are very ill” was the predominant positive theme for hospitals.
However, hospital staff were described as rushed and impersonal and hospitals were described as potentially dangerous places especially in regard to the risk of nosocomial infections. “Hospitals can make you sick” was a negative theme derived from these interviews (Figure).
Figure. Positive and Negative Themes
More Personal Care
Able to Perform More Complex Procedures
Fear of Hospital Acquired Infections
Unfamiliar Staff, Surroundings
The importance of feeling secure, cared for, and cared about, are cross-cutting themes reflected in both the criticism and praise of NHs and hospitals from these residents. The next section will offer discussion about findings.
What is instructive in the residents’ comments is that it was not their condition, but their experiences, in these facilities that inspired these spontaneous comments and strong emotions. It is probably not surprising that, as the results suggested, both the hospitals and NHs were beloved by some and feared or dreaded by others. What is instructive in the residents’ comments is that it was not their condition, but their experiences, in these facilities that inspired these spontaneous comments and strong emotions. To improve the quality of care and residents’ satisfaction with their stay, NHs can build upon their strengths and remedy their weaknesses.
One of the strongest themes was the comfort and familiarity of the NH, and the feeling that staff members providing the care knew the resident. New models of long-term care, such as the Green House Project, emphasize personalized care, use of care partners, and small, home style living quarters with private rooms and baths (The Green House Project, 2015) designed, at least in part, to accomplish this goal of making residents feel comfortable and known.
The desires of Taiwanese NH residents (Chuang, et al., 2015) for a sense of security, caring, and respectful attitudes from staff, seem to be echoed by residents interviewed in two different Scandinavian countries and by the U.S. NH residents in the current study. Concerns of family members about staffing levels noted in the synthesis of 14 studies by Fosse and colleagues (2014) were also evident in this study. Although not the greatest concern in this study, “the missing doctor” issue also arose (Fosse et al., 2014). There was a misconception on the part of some residents that they would see “their” doctor if they were in the hospital and that doctors were always available in a hospital.
Many specific concerns expressed by residents, such as understaffing, inattention, and risk of infection, can be interpreted as a wish to feel safe and secure in both the NH and hospital. The comments about familiarity, interpersonal skills of staff and impersonal or rough care can be interpreted as a wish to be well cared for and cared about. These cross-cutting themes were reflected in previous studies of residents in the U.S. (Fosse et al., 2014) and many other countries (Chuang et al., 2015; Hjaltadóttir & Gústafsdóttir, 2007), suggesting that these concerns may illustrate primary needs of older adults requiring supportive care.
Although the protection of personal health information is essential, NHs could establish mechanisms for obtaining permission to share a resident’s fate... Years ago, Curtin (1972) commented that our “culture does not want to concern itself with either death or aging” (p.226) and that we pretend death does not exist, which “robs the old of the chance to complete their life” (p.287). Gubrium (1973) noted that NH staff believed it is not a good idea to discuss death in front of the alert residents. This still seems to be the case in some NHs, yet residents are clearly aware of what happened to other residents and are cheated of the opportunity to mourn and to memorialize them by the silence of the staff. This needs to be addressed more openly by NH staff. Although the protection of personal health information is essential, NHs could establish mechanisms for obtaining permission to share a resident’s fate (death, still in the hospital, transferred to another NH or other outcome) with others at the NH.
Improvement of staff interpersonal skills, especially the CNAs’ interpersonal skills, could be the difference between a satisfied and dissatisfied resident. Strategies to develop empathy for a resident’s situation may also help CNAs recognize the extent to which residents depend on them to meet very basic needs. A brief orientation to the NH upon admission would have spared the fear expressed by one participant when she was first admitted and thought the nurses were ignoring her.
Providers at every level have the potential to positively impact the residents’ experiences in a long-term care facility. Providers at every level have the potential to positively impact the residents’ experiences in a long-term care facility. Staff can be directed to provide a prompt response to residents’ calls for assistance. Inattentive, rude, and abusive staff can be counseled and terminated if necessary. Understaffing is more challenging but can be remedied as well (Harrington, Zimmerman, Karon, Robinson, & Beutel, 2000).
Continued NH reform, new federal standards, and actively enforced regulations are needed to address both understaffing and a better mix of staff skills (Harrington, 2015). Most care provided in NHs is done by CNAs and licensed vocational/practical nurses. Yet it is the registered nurse who is key to improving the quality of NH care, particularly in fulfilling the critical role of resident monitoring, which has been cited as essential to prevention of adverse events (Dellefield et al., 2015). Based on the interviews reporting the experiences of residents who participated in this study, many are aware of this, either based on their own observations and/or comments from staff members. There is sufficient evidence of the value of registered nurses in the NH to support the call for registered nurses around the clock in all NHs.
Continued NH reform, new federal standards, and actively enforced regulations are needed to address both understaffing and a better mix of staff skills. The data presented above, received during interviews inquiring about residents’ decision options in the event of an acute change in their conditions, serendipitously provide rich descriptions and increased understanding about the experiences of residents of long-term care facilities. Macro level changes, as described above, are needed to address such concerns as staffing. However, the study findings also suggest that most nursing homes can positively impact residents’ experiences, and truly be the comfortable, familiar places residents want, given a relatively small amount of effort and change in the way they operate.
Acknowledgement: This research was supported by contract number 1IP2PI000281-01 from Patient-Centered Outcomes Research Institute (PCORI).This article, They Know Me Here: Patients’ Perspectives on Their Nursing Home Experience is based on information obtained in a recently completed study, Involving Nursing Home Residents and Their Families in Acute Care Transfer Decisions. This research was supported by Contract Number 343268-2 from PCORI (Patient-Centered Outcomes Research Institute). All statements in this report, including its findings and conclusions, are solely those of the authors and do not necessarily represent the views of the Patient-Centered Outcomes Research Institute (PCORI), its Board of Governors or Methodology Committee.
Ruth M. Tappen, EdD, RN, FAAN
Ruth M. Tappen is a Professor and Christine E. Lynn Eminent Scholar in Nursing at Florida Atlantic University in Boca Raton, FL. She is an expert in gerontological nursing, particularly the care of individuals with cognitive impairment and their families and facilitation of care transitions. She has authored over 80 articles and five books.
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