Across the world, the population is aging, and the oldest populations are in developed countries (World Health Organization [WHO], 2011). The WHO has reported that, in 2010, 524 million people were aged 65 years or older, and by 2050, it has been predicted that this number will rise to 1.5 billion, accounting for 16 per cent of the world’s population (WHO, 2011). Older people in developed countries are more likely than any other age group to require hospitalization (Rachel, Doyle, & Gundy, Reference Rachel, Doyle and Gundy2009; Statistics Canada, 2010; WHO, 2011). Often older people, while maintaining a level of independence, rely on family caregivers, typically women, to provide care and assistance at home (Armstrong & Armstrong, Reference Armstrong, Armstrong, Grant, Armaratunga, Armstrong, Boscoe, Pederson and Willson2004). As an example, in Canada, 3.8 million adults aged 45 years and older are family caregivers for an elder relative (Turner & Findlay, Reference Turner and Findlay2012). Increasingly, family caregiving is crossing over into acute care settings as older people are admitted for a wide variety of health issues.
There is a small body of literature about family caregiving for hospitalized older people on general or specialized geriatric units. In a study undertaken by Li (Reference Li2005) using qualitative methods, families were worried about the nursing care being given. However, Li did not describe or provide examples related to the care that families were worried about. Clisset, Porock, Harwood, and Gladman (Reference Clissett, Porock, Harwood and Gladman2013) found that family caregivers reported disruption of their role when an older relative was hospitalized. Caregivers took a proactive approach to involving themselves in care by trying to work collaboratively with staff; however, relationships between family and staff were characterized by poor communication and lack of family involvement in decision-making.
Lowson et al. (Reference Lowson, Hanratty, Holmes, Addington-Hall, Grande and Payne2013) explored family caregiving in acute care from the perspective of older people at end of life. Care recipients reported limitations on their family caregivers’ role when they were admitted to acute care, disrupting the familial caring relationships and causing the family caregivers to navigate new roles within the institutional setting.
The unique experience of registered nurses (RNs) who concurrently provide family caregiving for an elder relative has also been the focus of a small body of research. Ward-Griffin has coined the term “double duty” caregiving to describe RNs and allied health professionals who are also family caregivers to older people, highlighting the careful negotiation of private and public roles that these individuals must negotiate (Ward-Griffin, Reference Ward-Griffin2004; Ward-Griffin, Brown, Vandervoot, McNair, & Dashnay, Reference Ward-Griffin, Brown, Vandervoort, McNair and Dashnay2005; Ward-Griffin, St. Amant, & Brown, Reference Ward-Griffin, St-Amant and Brown2011). A review of research about RNs-as-caregivers identified seven papers published between 1999 and 2011 and generated six characteristics of this role: (a) the specialized knowledge of RNs, (b) dual-role conflicts, (c) competing expectations, (d) building relationships with staff, (e) gaining access, and (f) the context of health care (Giles & Hall, Reference Giles and Hall2013).
Much of the research to date has focused on the personal impact of double-duty caregiving on the RN rather than the RNs-as-caregivers’ perspective on the care their relative receives, such as nursing care in acute settings, a gap addressed in this present study. This is particularly of relevance in light of recent media reports of failures in nursing care in the United Kingdom (U.K.) (Francis, Reference Francis2013). Despite the volume of literature about family caregiving for older people, there remains a paucity of research about the experiences of family caregivers when an older adult is admitted to acute care, which warrants further study. As well, the RN’s perspective may provide information which can inform nursing care and how it is carried out. Because we wanted to understand the experiences of RNs as family caregivers of hospitalized older people, we determined that the Strauss and Corbin grounded theory (GT) method was most suitable. The GT methodology allowed for theory development which not only described the experience but also allowed for theory development as informed by the participants.
Method
Aim
Our aim was to investigate and develop theory regarding nursing care provision, as described by RNs, who were family caregivers to older adults, when that older adult was admitted to acute care.
Design
The GT methodology guiding the study allowed us as the researchers to generate thematic understanding by allowing for an open exploration of the experience described by the RN as caregiver. Thematic understanding refers to theme development to explain and provide understanding of a phenomenon. We used the Strauss and Corbin approach to GT because this allowed for theory development as to why the participants experienced what they described; we did not want to merely illustrate the lived experience (Strauss & Corbin, Reference Strauss and Corbin1990). The purpose of theory development in accordance with GT is to develop a theory that allows for understanding and an explanation of why a phenomenon exists or is described.
As the researchers, we were all RNs with experience working in acute care areas with older people. GT allowed for use of previous knowledge and experience of researchers to provide insight regarding the participants’ experiences. Therefore, we entered the field of research as hybrid researchers as described by Jootun and McGhee (Jootun & McGhee, Reference Jootun and McGhee2009). A hybrid researcher is someone who researches in familiar territory and who may have inherent biases and assumptions. However, bias is not always a negative component of research, particularly in relation to the GT methodology (Reed & Proctor, Reference Reed and Proctor1995). To further support trustworthiness, reflexivity was undertaken in accordance with GT methods; this is where the researcher reflects on their findings within the context of their experiences and knowledge and does so to ensure that assumptions are not made due to bias.
Sample and Data Collection
Participants were recruited from two large hospitals in British Columbia over six months. Posters advertising the study were posted in visible areas within the hospitals. To allow for understanding regarding the phenomenon under study, we selected participants on the basis of the following inclusion criteria: (1) registered as an RN at the time of older adult’s admission to the acute care area within a tertiary care centre; (2) caregiver to an individual aged 65 years or older living in either their own home or independent living facility; and (3) the care recipient was admitted to an acute care area in the past year at the time of data collection.
Following signed consent, participants were interviewed individually in their own homes; the interviews lasted from 30–90 minutes. Two researchers carried out the interviews; one was an experienced GT researcher (TT) and the other was a doctoral student (PT) who was trained in GT interview techniques by the research team. Participants were encouraged to speak freely about their experiences and thoughts. The focus of the prompts/questions changed throughout the data collection in line with the constant comparative method (see Table 1). During the process of data collection, the interviews became more structured to allow for exploration of topics and themes that were identified from the initial interviews. Purposive sampling was used initially; this ensured that participants had knowledge of the phenomenon under investigation. During the process of the data collection using grounded theory, the researcher (TT) undertook theoretical sampling (Marcellus, Reference Marcellus2005) which ensured that further participants were recruited to test the theory being developed. As well, we sought to recruit male participants and participants from ethnic minorities; in spite of this effort, none came forward to enable this aspect of theoretical sampling. We based sampling and further data collection on the emerging theory (Glaser & Strauss, Reference Glaser and Strauss1967; Strauss & Corbin, Reference Strauss and Corbin1998). The process was a circular one and involved going back to the data and returning to the participants (Marcellus, Reference Marcellus2005).
Examples of questions for prompts and development of new questions using the constant comparison method
There are no tests to determine sample size needed – for example, in a review of 100 published studies using GT methods, there was a range of numbers recruited from 5–114 (Thomson, Reference Thomson2011). Strauss and Corbin (Reference Strauss and Corbin1998) stated that in the case of interviews, there are no set numbers for when theoretical saturation occurs; rather, several factors will determine sample size which are (a) the scope of the research question, (b) the researchers’ knowledge and ability in the research area, and (c) the ability of the interviewees to express their experiences to form the data (Corbin & Strauss, Reference Corbin and Strauss2008). The scope of our research question was very specific; the researchers had knowledge of the area being studied and the interviewees were all RNs who had experience working as nurses in clinical areas and were all able to provide rich data.
These factors determined that we were able to develop theory with data from 12 participants. Data collection ceased once saturation had been achieved. This occurred once the codes developed from the data started to appear connected and a pattern which represented a theory was apparent. During the data collection, analysis, and constant comparative methods, the researchers got a sense of saturation at around participant number seven, in that we felt a sense of being able to predict the experience that was described. This observation was noted in our memos, and we continued to recruit participants to test the sense of predictability.
Credibility: Fit, Generalizability, Control, and Understanding
GT utilizes reflexivity rather than bracketing; reflexivity is the process of the researchers’ acknowledging the bias they may have while questioning their findings within the context of their bias (Elliott, Fischer, & Rennie, Reference Elliott, Fischer and Rennie1999). An aspect of this is memo writing, which was undertaken throughout the process of data collection and analysis. Memos acted as a written record of the researchers’ inner dialogue about emerging ideas, hunches, questions, and categories (Shreiber & Stern, Reference Shreiber and Stern2001). This served as a record of the study process (as an audit trail) (Marcellus, Reference Marcellus2005).
Furthermore, the constant comparison method added to the researchers’ ability to question and develop theory, and it ensured that the theory was grounded within the data. Unlike in other types of qualitative research, respondent validation is not used with GT (Eaves, Reference Eaves2001); although the purpose of respondent validation is to prevent bias, it has been recognized that this produces another data set (Murphy, Dingwall, & Greatbach, Reference Murphy, Dingwall and Greatbach1998). GT involves itself with developing theory during the data collection which, due to the nature of the constant comparison method, are constantly evolving.
A further strategy we applied in order to add to the credibility of our study was the use of an independent coder. Another experienced researcher (JB) read the interview transcripts to increase the validity of the interpretation of the results (Appleton, Reference Appleton1995). This is a process that helps to diminish investigator bias and can be seen as a qualitative form of inter-rater reliability (Mays & Pope, Reference Mays and Pope1995). Furthermore, to determine credibility, we addressed certain issues which included fit, generalizability, understanding, and control (Strauss & Corbin, Reference Strauss and Corbin1990). Fit refers to whether the emerging theory fits the situation being explored. To ensure fit, the researchers went back and forth from data analysis, data collection, memo writing, and reading relevant literature to test out and examine the emerging theory. Understanding refers to the development of the theory and the ability to fit and translate the theory to the description of the experience provided by the participants. For example, participants described frustration and anger with the care they observed; the “Normalization of Neglect” theory provides an explanation to understand the nursing care that the participants had observed. Generalizability refers to the shared experiences that participants described, in that all the participants had similar experiences and these descriptions informed the theory developed. With regard to control, participants described the nursing care the older person had received which was neglectful. The theory of “Normalization of Neglect” gives a reason as to why these practices were apparent and why they continued.
Ethical Considerations
Ethical approval for the study was obtained from the University of British Columbia and in accordance with the policies of the participating organizations. Participants provided signed consent after they had received and had opportunity to read the study information leaflet. Personal details were available on the consent forms; however, no personal identification formed a part of the data held on the computer. All data were held on computer files which were password protected, and only the researchers had access. All data will be kept for five years, in accordance with UBC policy following completion of the study.
Data Analysis
The interviews were taped and transcribed immediately after each interview by the first author (TT) to allow for analysis of the text. All transcription and initial analysis and development of codes were undertaken by one researcher, who used the constant comparative method (Chenitz & Swanson, Reference Chenitz, Swanson and Chenitz1986). Codes were organized and developed using the GT framework for coding; this coding was divided into three phases labelled as open coding, axial coding, and selective coding, which is the process of relating codes (categories, subcategories, and properties) to each other through a combination of inductive and deductive thinking (Strauss & Corbin, Reference Strauss and Corbin1998; Walker & Myrick, Reference Walker and Myrick2006). To assist with our data organization and management, QSR International’s NVivo software was used.
Results
Participant Recruitment
Over the data collection period of six months from June through to December 2011, we recruited 12 participants. All the participants were women and all were Caucasian; the average age of the caregiver was 54 years; and the majority of the participants were daughters looking after their mothers (see Table 2).
Participant characteristics
Description of Codes
In the initial stage of coding, 34 codes were identified; during further analysis, categories were identified with regard to properties and dimensions (Table 3). We sorted the initial 34 codes into axial codes with the purpose of sorting into categories which matched the codes with the phenomena described by the participants. We further sorted the axial codes into two selective codes; the “Culture of Neglect” which the participants described then led to behaviours which reflected and represented “Vigil by the Bedside”. These two selective codes informed by the data led to the core category “Normalization of Neglect”; this became the theory that informed understanding in line with GT methods.
Coding
Normalization of Neglect (Core Category)
The “Normalization of Neglect” theory was embedded within the data; neglect is a form of abuse, and the occurrence of neglect was a common observation which formed the experience described by all the participants.
Culture of Neglect (Selective code 1)
The culture of neglect identified by participants comprised several elements, with an overarching sense of dehumanization of their older relative.
Ageism (Axial code 1)
Participants described behaviours of nursing staff as ageist. There was a particular concern with ageist speak:
The care aide made a comment, that my Mom is spoilt, in front of my Mom.
This is an example of infantilizing speech associated with ageism. Another participant described how her mother was ignored and avoided because she was an older adult and that this was because nurses were ageist and treated older adults differently:
She is cognitively intact, that people could talk to her, instead of ignoring her as a person and walking around. As soon as you get to 70 I think people stop, start not looking at people as people, and they talk to those around them rather than to them”.
Participants also described how older people were dealt with as if they were “slabs of meat” or treated as objects rather than people. For instance, a participant described nurses’ working:
You know – like making a bed over somebody together and the person is just a potato being rolled back and forth; it was really quite sad.
This description suggested that the older patients were ignored by the nursing staff and participants associated this behaviour with neglectful care afforded to older adults.
Many of the participants described how basic care was not provided. For example, a participant said,
Dad was grossed out coming home after three days and none of that personal care had been given.
Another participant described how the basic care was so lacking the family ended up providing care:
It was so bad to the point that my sister-in-law and I had to do all of Mom’s care. My sister-in-law and I went three times a day to do her care; we gave her a bed bath every night, we did her dentures every morning.
All of the participants talked about lack of dignity for their elders with issues around mixed-gender bed areas and lack of provision of privacy:
At [facility name] you know there they have male/female beds, rooms. Well I think that’s actually common everywhere, but it’s particularly common at [facility name]. Anyways, and in her confusion, she got up out of bed one night to go to the bathroom and she went back to bed and she got in bed with a man. In the context of my parents, there could be nothing worse.
Another participant gave a particularly disturbing account which demonstrated the complete lack of respect and preservation of dignity for an older lady. Although the mixed-gender bay was an issue, the apparent neglect of the patient’s privacy was more so:
The lack of privacy – she was in a room with two other men. A male nurse came in and didn’t even pull the curtains and was doing something with her catheter (urinary catheter).
Of particular concern was the report that patients were being told by the nursing staff that they were too busy to get them up for toileting, and were telling patients to be incontinent. A participant reported that:
He [dad] had to have a bowel movement and this was more than one occasion, more than one nurse, and they said, “well, we are too busy right now so just go in your pants.”
Another participant said:
My Mom told me, “you’re calling them, calling them, and you have to defecate in your bed”.
Participants described how the nurses were using incontinence pads even when these were not required:
They (the nurses) put Attends [incontinence pad] on her, and she said “I don’t wet myself”. She said they won’t listen to her and they put it on.
There was also some suggestion of inappropriate use of urinary catheters. Another participant said:
My dad had the catheter put in, in emergency, but he still had it in and I asked why it was still in; I was told it was because Dad was incontinent. I said the last thing we need for Dad to have is a urinary tract infection.
While the participants were concerned about the indignity of these actions, they were also worried about incontinence when the older person went home. As a participant explained:
They spend some time in hospital and then they have a problem with continence when they go home.
The participants’ identification of these care issues related to continence care and the potential consequences illustrates the integration of their own knowledge of “good” nursing care with their knowledge as a family caregiver.
Hospital Acquired Injury (Axial code 2)
The participants also expressed concerns around hospital-acquired injuries (HAI). During interviews, the participants were aware of HAIs and frequently discussed either the risks or the occurrence. For example, a participant shared:
They [nurses] did not record his intake [fluid intake]; when I got him home he was on the verge of delirium.
Another participant described how the lack of care had caused her father to suffer a severe skin complaint:
He had a diaper rash; his skin was peeling off his thighs. We had been able to keep my Dad’s skin intact for 3 years; I’m disappointed that the nurses could not achieve that outcome in hospital.
Participants also voiced awareness of nutritional needs and described observing nutritional needs of other patients not being met; for example,
There were a number of times a dinner tray is put at the foot of the bed and picked up from the foot of the bed and nobody’s had a chance to eat because they don’t know it’s there.
Another participant described how her mother had become malnourished and had lost significant weight while on the acute care unit:
She went in there weighing 94 pounds; she left there weighing 83 pounds.
Many of the participants expressed that the pain of their elders was not managed and that this affected other aspects of the patient’s recovery such as mobilizing. One participant said:
She [mom] hadn’t been up all day because she was having so much pain.
Another participant described how her mother’s pain was being assessed and the inadequacy of the approach as the nurses did not take into consideration her mother’s specific needs:
They would say, “Margaret, what would you say your pain is from 0–10?” and she would always say 4, but her body language and screaming would indicate otherwise.
As well, there was comment that the shared experience of neglect created a bonding among patients. One participant likened the experience to a shared torture:
And there’s such a bonding experience, almost like a torture; It – it honestly is torture. It’s, it’s so disgusting.
Bonding refers to the shared experience that patients had, and as a response to the care they received or did not receive, the patients appeared to bond, as described by the participant, over their shared negative experience.
Vigil by the Bedside (Selective Code 2)
Perhaps as a result of this culture of neglect, participants described how they felt compelled to keep a vigil by the bedside to minimize harm for their older relative while they were in hospital.
RN Rationalization (Axial code 3)
In trying to understand the nursing care the participants had observed, there was some discussion around systems and staffing which may have contributed to the care provided. A participant said:
It’s actually the system, the political system that is causing short staffing, and causing, you know, nurses not to be able to attend to patients in the way that they should.”
Issues such as shortage of staff and use of casual staff were described:
Staffing is an issue; it surprises me how many of the staff were casual. Staffing mix has changed; staffing consistency has changed.
Emotions and Response (Axial codes 4 & 5)
The nursing care they witnessed as caregivers for their older relative in hospital contributed to feelings of shame for their nursing profession.
I was embarrassed to be a nurse.
Participants voiced emotional responses to their experience; one participant expressed this with her comment:
I was feeling so many emotions over that, like the anger and the sadness.
Participants described a sense of fear for the welfare of their older relative:
We felt we didn’t want to leave Dad.
Another participant described the hospital as a place that causes harm:
It becomes more and more that you have to get people out of hospital as soon as you possibly can, so that nothing more goes wrong.
As a result of losing trust in the nursing care witnessed, participants would either take over care completely or negotiate for care to be provided. A participant described her family’s routine:
My sisters and I were doing shifts, shift work, so we were – you know, I would be there for, you know, 11 hours, and my sister would be there for 11 hours.
Another said:
I would do the peri care and teeth care and any time I came in I knew they probably had not been done so I just set about and did them.
Negotiation was another strategy that was evident:
This is what I said to the nurse, “So here is the deal, I am going to do everything for Mom and get her settled. I am going to take her for a walk, I’m gonna wash her up, I’m gonna get her into bed. All I need from you [the nurse] is every 4 hours that you give some Tylenol throughout the night so that she is comfortable and that she can move”.
Ultimately, the participants described wanting to get their older relative safely back home:
I took her out of the hospital early because I didn’t think the care was appropriate.
Normalization of Neglect (Core category)
Many participants discussed the culture of the units where older people were being admitted, and they described this culture as neglectful but which had become normal and routine over time. A participant commented:
It is just a culture that is allowed to develop over time.
Another said:
It’s like it becomes so routine that no one thought of them anymore or it doesn’t matter. It’s neglect; I think that’s the part that’s really hard.
Another participant tried to understand and reflect on her own nursing practice and experience:
Every unit will have their shifts where you can’t do what you really need to do, but if you don’t take time to reflect, it can become a culture.
Embedded within the discussion was the “Normalization of Neglect” theory, which was so prolific that neglect of the patients’ basic needs and dignity appeared to have become normal accepted practice.
In summary, the “Normalization of Neglect” theory was apparent in which the participants described a culture of neglect that had normalized poor nursing care and for some patients had led to hospital-acquired injuries such as malnourishment, pressure sores, falls, and pain (See Fig. 1). This experience fostered a sense of mistrust and loss of faith in the hospital environment among the participants, despite being RNs themselves.
A theoretical model depicting the development of the theory “normalization of neglect” as experienced and described by the RNs as caregivers to a hospitalized older person
Discussion
The theory developed from our study was “Normalization of Neglect”, where participants’ described neglectful care that appeared to be so commonplace that it had become normalized.
The normalization was apparent due to several factors, including (a) the frequency of reporting, (b) the response of nurses when neglect was questioned, (c) the apparent acceptance of nursing care behaviours, (d) actions of nurses such as telling patients to soil in their beds, and (e) the lack of privacy and dignity afforded to older patients. Similar to previous studies, participants were expected in this study to use their specialized nursing knowledge as caregivers for older relatives. Yet, as the findings illustrate, participants found a disjuncture between their identity as RN and the actual nursing care they observed in acute care settings. This created a sense of dissonance for them and contributed to feelings of distress, which has also been previously reported (Ward-Griffin, St. Amant, & Brown, Reference Ward-Griffin, St-Amant and Brown2011).
Previous research has largely focused on the RN-as-caregiver in the community, and this study extends understanding of this role in the acute care setting. As the following discussion illustrates, RNs are in a unique position to identify shortcomings in care for older people in hospitals. Neglect is an issue of increasing concern in Europe and North America, yet remains poorly understood (Reader & Gillespie, Reference Reader and Gillespie2013). Culture sets norms in terms of what is considered optimized or normal behaviour. Our study participants described a culture of neglectful nursing care which appeared to them to be commonplace and normal. Patient neglect has been described as having two aspects. The first refers to procedural neglect and health care staff not achieving acceptable standards of care. The second, described as caring neglect, refers to witnessed behaviours thought of as uncaring attitudes (Reader & Gillespie).
Neglect has been further defined as “The failure of a designated caregiver to meet the needs of a dependent” (Lachs & Pillemer, Reference Lachs and Pillemerk1995, p. 437). Relatively recently, the issue of neglect has been particularly driven by media, charities, and health regulatory bodies, and this has led to politicization of the issue, particularly in the United Kingdom (Reader & Gillespie, Reference Reader and Gillespie2013). The term neglect within the context of patient care has been described as an aspect of elder abuse (House of Commons and House of Lords UK, 2006; McDonald & Collins, Reference McDonald and Collins2000). Within our findings, the neglect described was associated with poor provision of basic nursing care such as nutrition, hydration, pain management, lack of privacy, and lack of dignity. Much of the participants’ description focused on dignity and the lack thereof given to their older relatives.
Others have reported that relatives have concerns with dignity but did not suggest what the concerns around dignity were (Lindhardt, Bolmsjo, & Hallberg, Reference Lindhardt, Bolmsjo and Hallberg2006). Dignity is perceived by society as an important concept (United Nations, 1996). Respect, privacy, autonomy, and worth are attributes associated with dignity and have been agreed to by health care professionals worldwide as central to practice (Kelly, Reference Kelly1991; Yonge & Molzahn, Reference Yonge and Molzahn2002). An aspect of this lack of dignity which participants described was infantilizing speech; this has been reported commonly by others and has been associated with ageist attitudes (Brown & Draper, Reference Brown and Draper2002). Furthermore, study participants were particularly focused on situations where their relatives’ privacy was not maintained, such as mixed-gender rooms which has been reported as a factor that threatens dignity (Gallagher, Li, Wainwright, Rees Jones, & Lee, Reference Gallagher, Li, Wainwright, Rees Jones and Lee2008; Gallagher & Seedhouse, Reference Gallagher and Seedhouse2002: Health Advisory Service, 2000).
Another situation that was particularly disturbing to participants was when nurses told patients to be incontinent in their beds. Issues within our findings have been reported by others in the UK (Patients Association England, 2011), such as lack of timely toileting and problems with personal care. In a survey which questioned 80,000 adult inpatients in the UK, the practice of nurses telling patients to soil in their beds was also identified (Quality Care Commission, 2007). Lindhardt et al. (Reference Lindhardt, Bolmsjo and Hallberg2006) investigated relative experiences of older adults being admitted to hospital; they reported that relatives were worried about basic needs such as hygiene and nutrition, and that some relatives lacked confidence in the nursing staff. Malnourishment was another concern that was described by the study participants, and this issue has been well documented internationally (Braunschweig, Gomez, & Sheean, Reference Braunschweig, Gomez and Sheean2000; Kyle, Unger, Mensi, Gneton, & Pichard, Reference Kyle, Unger, Mensi, Gneton and Pichard2002; Quality Care Commission, 2007; Singh, Reference Singh2006). This is concerning, considering the importance of nourishment in aiding recovery and healing. As well, malnourishment has been associated with increased risk of in-hospital morbidity and mortality, increased lengths of stay, and use of health care resources (Braunschweig et al., Reference Braunschweig, Gomez and Sheean2000). Many participants reported that pain management was often inadequate or not provided at all. Previous research has highlighted that older people are likely to receive inappropriate pharmacological treatment for pain management (Landi, Onder, & Cesari, Reference Landi, Onder and Cesari2001). Furthermore, pain assessment in older people can be problematic (Herr & Garand, Reference Herr and Garand2001; Taverner, Reference Taverner2005). However, although there are factors that may impede adequate pain management, it is apparent that when appropriate methods are utilized, older people can and do achieve adequate pain management (Zheng, Gibson, Khalil, Helme, & McMeeken, Reference Zheng, Gibson, Khalil, Helme and McMeeken2000).
A response of the participants in our study to the care they witnessed was to remain with the older person at all times, which we coded as “Vigil by the Bedside”. Other literature has reported varied times that families spend in the hospital which ranged from three hours to eight hours or more a day (Auslander, Reference Auslander2011; Desbiens, Mueller-Rizsner, Virnig, & Lynn, Reference Desbiens, Mueller-Rizsner, Virnig and Lynn2001). Within our study, participants described remaining with their relative because they were concerned with nursing care; other studies have also reported this (Auslander, Reference Auslander2011; Li, Stewart, Imle, Archbold, & Felver, Reference Li, Stewart, Imle, Archbold and Felver2000; Lindhardt et al., Reference Lindhardt, Bolmsjo and Hallberg2006). Lindhardt et al. (Reference Lindhardt, Bolmsjo and Hallberg2006) reported that some relatives lacked confidence in the professionals and were concerned with shortage of staff and basic needs not being met; they dealt with this by ensuring they were present to provide care.
In a review of family and staff partnerships in long-term care for older adults, it was found that families would only disengage from care if they were confident in the nursing care being provided (Bauer & Nay, Reference Bauer and Nay2003). Furthermore, in a study investigating relatives of older people with dementia living in long-term care, it was reported that relatives would make unannounced visits to give them an opportunity to see how care was being provided when they were not there (Hertzberg & Ekman, Reference Hertzberg and Ekman2000). Allen (Reference Allen2000) undertook a study where staff and relatives within a medical unit were interviewed; nurses felt that relatives had unrealistic expectations of the care they thought should be provided. Some relatives interviewed in this study understood if certain nursing tasks could not be completed and that standards of care could not be the same as they were at home, because the nurses have nine patients to care for rather than just one. But nurses also reported that they were worried about the nursing care. They felt this was inadequate and that this was due to staffing issues.
Participants in our study discussed reasons for the apparent neglect they witnessed, such as ageism, inadequate staffing levels, cultural factors, and use of too many on-call staff. Keogh (Reference Keogh2013) undertook a meta-synthesis of the research on neglect of patients. Much of the evidence supported the belief that neglect of patients is often associated with high workloads and nursing staff burnout. High workload has frequently been reported as a cause of neglectful behaviour, which can be associated with too many patients to care for and too many tasks to perform, leaving the nurses overwhelmed and unable to time manage their workload effectively (Care Quality Commission, 2011; Goergen, Reference Goergen2001; Jewkes, Abrahams, & Mvo, Reference Jewkes, Abrahams and Mvo1998; Zhang et al., Reference Zhang, Schiamberg, Oehmke, Barboza, Griffore and Post2011). Issues around nurse staffing levels and the impact on care provided are apparent in the literature, and the direct impact of nurse staffing levels on patient outcomes has been clearly demonstrated. In a large study published in the Lancet (Aiken et al., Reference Aiken, Sloane, Bruyneel, Van den Heede, Griffiths and Busse2014), researchers identified that mortality is directly corresponded with nurse staffing and reported that nurses caring for, on average, six patients would have almost a 30 per cent reduction in mortality, when compared with hospitals in which nurses cared for, on average, eight patients.
Furthermore, the level of education and qualification impacted on patient outcomes, and the authors found that mortality rates decreased significantly when at least 60 per cent of nurses were bachelor’s–level prepared. As well, poor organizational management, which creates high workloads, stress, job insecurity, ineffective change management, lack of resources, and poor or lack of nursing leadership, has been shown to result in de-motivation of staff, burnout, and disengagement (Francis, Reference Francis2013). This is further reported in research which found that nurses in poorly managed work environments give lower quality patient care (Aiken et al., Reference Aiken, Sloane, Clarke, Poghosyan, Cho and You2011).
Ageism has also been cited as a cause of neglect and a cause of inappropriate attitudes which may lead to poor care. Ageism continues to be endemic in Canadian society and other Western countries, and is apparent among health care professionals. Western societies put high value on youth, with negative connotations associated with old age (Phelan, Reference Phelan2010), and it remains common for nursing students to avoid working with older people (De la Rue, Reference De la Rue2003).
Higgins, Van DerRict, Slater, and Peck (Reference Higgins, Van DerRict, Slater and Peck2007) suggested that older people in acute care areas might be neglected because they have lower status, and there is a shortage of time to care. The normalization piece of neglect refers to a culture which enables and normalizes poor nursing practices, as identified by the Francis report (Francis, Reference Francis2013). This normalization within a culture has been further discussed and addressed in a systematic review undertaken by Reader and Gillespie (Reference Reader and Gillespie2013) who investigated patient neglect in health care institutions. These authors presented reasons why neglect is apparent and sometimes becomes an aspect of a culture within a health care setting. These reasons included poor management, skill mix and nurse staff numbers, high workload, lack of nursing leadership, and burnout.
From our study, we conclude that a culture of neglect was apparent and that the nature of neglect had become normalized. The findings in our study reflect previously reported issues associated with neglect such as malnourishment, poor pain control, and emotional issues which include dignity (Care Quality Commission, 2011). These issues are further reflected in the media and have put pressure on politicians and health care authorities to address these concerns (Borland, Reference Borland2011; Campbell, Reference Campbell2011; Laurance, Reference Laurance2011). The culture of neglect has been recently discussed and addressed following the Francis inquiry carried out in the UK as a consequence to the Staffordshire Trust failings (Francis, Reference Francis2013). The report concluded that neglect of patients, particularly older people, had become part of the culture of the hospital and that this had led to disastrous outcomes for some. The findings reported that a culture of poor care which was neglectful had led to 1,200 patient deaths between 2005 and 2008, and that this clearly demonstrated the catastrophic outcomes when neglect had been allowed to become a part of the culture within a health care setting.
Recommendations for Further Research and Clinical Practice
Our findings are not entirely new, and following the Francis (Reference Francis2013) report, it is apparent that neglectful nursing is a problem within health care settings internationally. Neglect and abuse of older people in acute care facilities is evidenced in several UK reports, the most significant being the Francis report (Reference Francis2013). It is not useful or productive to view the problems identified by Francis (Reference Francis2013) as a uniquely UK problem, and our study supports this. In a discussion paper published by Health Canada (McDonald & Collins, Reference McDonald and Collins2000), it was reported that there has been virtually no research on abuse or neglect of older people in acute care settings within Canada.
The report recommended that research investigating the extent and prevalence of abuse and neglect is urgently required. As far as we can tell, there appears to be little or no acknowledgement of the problem of neglect in acute care settings in Canada, and therefore no report of the problem’s being addressed is available. In the United Kingdom (U.K.), poor care received by older people is being addressed and discussed. In response to the concerns voiced by relatives, patients, and carers reported by the Patients Association UK (2011), a Care Campaign was developed and disseminated. Since its inception, 80 per cent of health care authorities in the U.K. have signed up with an overall aim of improving and addressing the apparent neglect and abuse of older people (Lomas, Reference Lomas2012). The United States (U.S.) and the U.K. are addressing the problem of neglect and lack of basic nursing care by introducing nursing rounds to ensure that vulnerable patients receive timely and appropriate basic care, such as toileting, nutrition, and pain management. The literature from the U.S. and the U.K. on nursing rounds has reported a positive outcome associated with such practices (Castledine, Grainger, & Close, Reference Castledine, Grainger and Close2005; Meade, Bursell, & Ketelsen, Reference Meade, Bursell and Ketelsen2006). As well, many hospitals in the U.S. and Canada are members of the Nurses Improving Care for Hospitalized Elders (NICHE) program, but no British Columbia hospital has signed up for this initiative (NICHE, 2013a). NICHE is a nurse-driven program which aims to assist hospitals in improving hospital care for older people (NICHE, 2013b).
The Francis report (Reference Francis2013) highlighted that poor skill mix and lack of RNs were factors that helped create a culture of neglect; because of this the UK government is ensuring and auditing nursing numbers and skill mix across health care facilities. Within British Columbia, our findings are especially timely considering the recent system delivery changes apparent within a British Columbia health authority, where RNs are being replaced with licensed practical nurses (LPNs), therefore shifting the skill mix and resulting in a less educated and skilled nursing team. There is an urgent need for all health care facilities to accept and understand that neglect can become a culture of care, only by accepting this can the problem be addressed. Further research is needed in this area and this should include quantitative studies which would provide empirical evidence of neglectful nursing practices in Canadian hospitals. Clinical care for older adults must address the possibility of neglect and strategies to prevent its occurrence should be introduced.
Study Limitations
It can be acknowledged that there are factors that may affect the credibility and reliability of this study. All the participants were female, and although this reflects the likelihood of women being caregivers within a family unit, the theory developed may not be a true representation of a man’s experience. The inability to recruit male caregivers is consistent with the difficulties encountered in other studies (Neno, Reference Neno2004) and is also likely due to the fact that women are more likely than men to care for an older relative (Armstrong & Armstrong, Reference Armstrong, Armstrong, Grant, Armaratunga, Armstrong, Boscoe, Pederson and Willson2004). Furthermore, all the participants were Caucasian; it is likely there are RNs from ethnic minorities who also have a caregiver’s role within the family. It is not possible to determine why the study attracted no participants from ethnic minorities; however, the study results and theory developed from the data are only representative of female, Caucasian individuals.
Conclusion
The “Normalization of Neglect” theory was embedded within the data, and its ramifications have been further supported by the literature; neglect is a form of abuse and, accordingly, should not be tolerated. Although the findings are generalizable to the study participants, they cannot be considered generalizable to all acute care facilities. However, we conclude that the findings of this research give a depressing picture of the nursing care that seems apparent within some acute care settings. These findings highlight the issue of neglect and abuse, and further investigation is warranted. Nursing care of older people needs to be given a higher status within health care. Adequately trained professionals with skills which enhance care of older people are required. If this problem of ageism, neglect, and abuse is not addressed, it is likely to escalate due to the aging population and the ever increasing strain on acute health care settings in developed countries.
