Aims and objectives
To explore the responses of healthcare professionals to the admission of people with cognitive impairment to the acute hospital setting.
To explore the responses of healthcare professionals to the admission of people with cognitive impairment to the acute hospital setting.
While improving care for people with dementia has been identified as a national priority, providing appropriate care in acute hospitals for people with comorbid cognitive impairment presents challenges to healthcare professionals.
Based on the principles of ethnography, this was a qualitative interview and nonparticipation observational study.
Seventy-two hours of nonparticipant observations of care together with semi-structured interviews with family carers of 34 older people who had been admitted to a UK general hospital and had a cognitive impairment. Interviews and observations were conducted in 2009 and 2010. Analysis was undertaken using Strauss and Corbin's framework.
The results identified a core problem, ‘disruption’, and a core process, ‘gaining or giving a sense of control to cope with disruption’. Healthcare professionals respond to the disruption in three ways: by acting to preserve the personhood of the individual; by seeking to protect themselves from the stresses associated with caring for the person with cognitive impairment; and by suspending the personhood of the individual.
Where healthcare professionals acted to suspend the personhood of the patient, they appeared to be demonstrating signs of ‘burnout’.
There is a need both to challenge poor practice and for positive development work with healthcare professionals who work in acute hospitals with people with dementia and cognitive impairment so that they are equipped with the skills, emotional resilience and organisational support to be effective in meeting the needs of people with dementia and cognitive impairment.
Mental health problems are common among older people admitted through the emergency department to acute general hospitals (Goldberg et al. 2012). At least half of patients aged 70 have cognitive impairment (delirium, dementia or both), and up to a third have depression (Royal College of Psychiatrists 2005). The issue of dementia in particular has been the focus of numerous review and policy documents (Audit Commission 2000, Department of Health 2001, Audit Commission 2002, Care Service Improvement Partnership 2005, National Institute for Health & Clinical Excellence 2006, Department of Health 2009), and acute care has proved to be an area of clinical practice that poses particular challenges, meaning that many people with dementia feel let down by acute service providers (Alzheimer's Society 2009). The study reported in this study considers the care given to people in acute hospitals with coexistent cognitive impairment. This impairment may be due to dementia, delirium or the chronic effects of other mental health problems.
There are many factors that mitigate against acute hospital settings meeting the needs of people with dementia and cognitive impairment. As the presence of cognitive impairment is often seen as secondary to the reason for admission, meeting the needs that this creates tends to be seen as a low priority and requiring time that takes nurses away from their primary purpose of delivering acute medical or surgical care (Harrison & Zohhadi 2005, Moyle et al. 2011). As a result, nurse interactions are often limited to meeting physical needs (Skaalvik et al. 2010).
While getting to know the anxieties, fears and needs of the individual is key to meeting the needs of the person with mental frailty (Davis & Kumar 2003), this is difficult in acute settings where lengths of stay tend to be short and there are significant time pressures (Eriksson & Saveman 2002). This can make it difficult for nurses to establish a bond with the person (Nolan 2006) and can cause distress to the individual (McLoskey 2004).
Healthcare professionals report that they experience difficulties in communication, and struggle to deal with wandering and other challenging behaviours (Alzheimer's Society 2009). As a result, they tend to spend less time with people with cognitive impairment than with other patients (Eriksson & Saveman 2002) despite being aware that their needs are greater (Goldberg et al. 2012). While family carers of people with dementia would like staff to be available and present, not distracted by tasks that are not ‘person-centred’ (Edvardsson et al. 2010), there is a tendency to deliver care that is task-orientated, prioritising the ward routine more than the needs of individual patients (Cowdell 2010).
This study reports on the findings of a study aimed at exploring the experiences of patients with cognitive impairment in acute hospitals, their family carers and other patients. The specific focus of this paper is the way in which healthcare professionals are perceived to respond.
Participants were recruited from two sites of a 1800-bed teaching hospital providing sole general medical and trauma services for a population of 660,000. All participants had been admitted to hospital for acute medical care and had been recruited to a related but separate study (Goldberg et al. 2012). As part of the consenting process for the related study, family carers were invited to indicate whether they would be willing to take part in an in-depth interview. Individuals aged 70 with unplanned admission to one of 12 wards, who had a cognitive impairment or mental health problem on screening [using the used the abbreviated mental test score (Hodkinson 1972), the four-item geriatric depression score (Almeida & Almeida 1999), the two-item PRIME-MD anxiety screen (Spitzer et al. 1994), the four ‘CAGE’ questions for alcohol misuse (Ewing 1984) and a question asking ward staff whether there was any other reason to believe a mental health diagnosis or cognitive impairment might be present], were eligible for inclusion. Recruitment occurred over 12 months.
Based on the principles of ethnography, this study used 72 hours of non-participant observation in the hospital setting and in-depth interviewing after discharge at the patients’ home to answer the research questions. One interview was undertaken with each of the 35 caregivers.
Before each observational period, the researchers from the larger study (Goldberg et al. 2012) and this study liaised to identify appropriate patients on the study wards, and arrangements with the study ward for the observation were made. On arrival, verbal consent was checked with the confused older patient if possible. Observations were focused on the participating patient and the healthcare professionals involved in their care.
Observations were made in various sites on the wards including the multibedded bays, patient lounge areas, near the nurses’ station and while walking with patients being observed. Most observations ended naturally when the patient was needed for a procedure or the researcher felt the observation had become intrusive.
Handwritten field notes were completed during the observations. Many field notes included a description of the ward in terms of noise and busyness; patients’ bed areas were described, and sometimes, detailed descriptions of patient activities were made. No field notes identified place or person.
Interviews were conducted following discharge to facilitate the involvement of the patient if at all possible. They took place between six and eight weeks after discharge, or after 12 weeks if the patient had died. Potential participants were contacted by telephone and invited to take part. Where they agreed, a date, time and location for the interview were negotiated. On every occasion, the interview took place in the home of the participant. Interview recordings were transcribed verbatim and anonymised. Transcriptions, interview notes and observation field notes were uploaded into nvivo, version 8.0 (QSR International Pty Ltd, Doncaster, Victoria, Australia) for management of data and tracking of analysis.
Initial coding began after the first interviews, and observations were entered into nvivo, version 8.0 (QSR International Pty Ltd). Data analysis was based on the principles of the constant comparison method (Glaser & Strauss 1967). This involved division of data into segments possible to understand without further explanation. Data were then categorised according to whether it reflected the actions or experiences of patients, family carers or healthcare professionals. Where appropriate, data were placed in more than one category. This study focuses on data that reflected the actions and experiences of healthcare professionals.
The next phase of analysis involved comparing each unit of data with all the others and gathering the units that seemed similar to each other into provisional categories (Charmaz 2006). The aim was to achieve a set of categories that were mutually exclusive and relevant to the emerging focus of the study.
Coding became more focused with the organisation of codes into categories. Ultimately, a more abstract theoretical coding was developed where it was possible to conceptualise ‘how substantive codes may relate to each other as hypotheses to be integrated into a theory’ (Glaser 1978). As theoretical coding continued, hypothesis generation with construction of a substantive theoretical explanation of the experience of hospitalisation for the confused older patient occurred. This ultimately led to answering this study's research questions.
Before recruitment, approval from the local ethics committee was obtained. There were four principal ethical issues of concern: the issue of conducting research with participants with limited or no capacity for informed consent; the prevention or minimisation of research burden as all participants were also recruited to the cohort study; to clarify the role of the researcher during observations; and the confidentiality and security of the data. These are discussed elsewhere (Gladman et al. 2012).
Ninety-six family carers were approached for interviews and 35 agreed, relating to 34 patient participants. Reasons for non-participation included readmission, fatigue, family disagreements, carer being too ill, other caring responsibilities and paid work.
The mean age of the patient participants was 87 (range, 70–99); 19 (56%) were female; 21 (62%) were widowed, nine (26%) were married, two (6%) had never married and two (6%) were divorced. The range of diagnoses recorded in case notes was: dementia 22, depression 4, delirium 1, alcohol 1 and anxiety 1, and no clear diagnosis was recorded in 5.
Sixteen had previously lived alone, of whom six returned, eight were discharged to a care home and two died. Eleven had previously lived with family, of who, five returned, four went to a care home, and two died. Seven had previously lived in a care home, of whom three died in hospital and the rest returned. A further five patients died between discharge and the time of the interview.
The relationship of 32 of the carers to the patient was recorded: nine spouses, eight daughters, seven sons, two nieces, two female friends, two sisters, one son-in-law and one granddaughter. The mean age of carers was 63 (range, 46–79) and 24 (69%) were female.
The results identified a core problem, ‘disruption’, and a core process, ‘gaining or giving a sense of control to cope with disruption’. All parties (patients, family carers and staff) appeared to find the admission to hospital of somebody with a cognitive impairment disruptive and responded in ways that appeared to help them feel in control in the face of this disruption. Healthcare professionals seemed to find it disruptive to their way of working but appeared to have a number of strategies to help them feel in control.
The admission to hospital of someone with cognitive impairment tended to be the cause of significant disruption to healthcare professionals. This was because working with them could be more complex than dealing with other types of patients. It tended to lead to greater ‘juggling’ of the needs of patients and relatives:
It's the relatives and the falls. We have to reduce the number of falls but to do that you'd have to keep them occupied … [they should] ask relatives to give 1:1. We can't give 1:1. And I get really upset when I see a fall. I feel it's my fault. Even if I've done everything else, I feel it's my fault. (Field notes, conversation with staff nurse during observation)
This sense of juggling was exacerbated when healthcare professionals tried to find the balance between meeting the needs of the individual and the needs of other patients, some of whom may be critically ill:
It's most difficult for all of us when we are really busy. It's like walking on hot coals, because you have to make decisions and the ward is chaotic with a person shouting or being very disruptive. And they need just as much care but in a much different way. I have to try to keep my patients alive and so have to learn to cut out the chaos of somebody wandering and being aggressive. (Field notes, conversation with staff nurse during observation)
In addition, some healthcare professionals considered that working with people with cognitive impairment was less rewarding:
There is no reward. I mean, you can't ask for reciprocation…kids give something back…even those on intensive care come back and are pleased to be alive. Well most of them. Here – no…I know they are still people but in a way they have no way of putting back what you [give them]. (Field notes, conversation with staff nurse during observation)
Healthcare professionals responded to the problem of disruption using a number of strategies to gain a sense of control, which can be clustered into three broad categories: embracing the personhood of the individual; protecting self without jeopardising personhood; and suspending the personhood of the confused older patient. Personhood has been defined as ‘a standing or a status that is bestowed on one human being, by another in the context of relationship and social being’ (Kitwood 1997, p. 8) and is central to the discourse on care for the person with cognitive impairment.
Embracing the personhood of the individual gave the staff a sense of control because they were choosing to give care that was considered to be of high quality. Generally, actions that embraced personhood were based on positive communication with the confused older patient and their family carer. During a ward observation, a ward housekeeper was seen to respond to patient distress with great sensitivity:
[The housekeeper goes over to Phyllis] Phyllis, now don't cry, it does you no good love. I'll make you a cup of tea. Your husband is coming soon like he always does. [The housekeeper wraps both arms around Phyllis and rocks her slowly like a child, gradually slowing until the sobbing ceases]. (Field notes, ward observation)
Similarly, where healthcare professionals recognised the relationship between the patient and family carer, this tended to make the family carer feel reassured and involved. Jill appeared comforted by the ward sister acknowledging their arrival on the ward and her willingness to update them on her mother's condition:
She went on to the cardiac ward and the sister was there straightaway… she said just go into the room and wait until we've got your mum settled for the night, and then I will come and talk to you. So then she came and she chatted, and she told us what to expect, why she was there, and what was going to happen. (Jill, daughter of Betty)
Sometimes, healthcare professionals took actions that were not positive for the confused older patient. While not necessarily harmful to the sense of personhood of the confused older patient, the intended beneficiary of the action, and subsequent sense of control, seemed to be the member of staff rather than the person with confusion. There were accounts of situations where healthcare professionals had to juggle the needs of numerous patients. This tended to result in delays to care that were not necessarily the fault of the individual nurse, as illustrated below:
The lady in bed 4 stated that she was unhappy and wanted to go to bed. The nurse explained that she would help her just as soon as she has finished with another patient [in bed 2]. Having helped sort this lady [in bed 2], the nurse explained to the lady in bed 4 that she needed to gather a few things before coming back to help her. (Field notes, ward observation)
The consequence of situations such as this was that healthcare professionals had to come to terms with the notion that while the care they were giving was adequate, it was short of ideal:
It's sad as they were all people once … like real minds. They all get good care on here but they do have to wait for it sometimes and I hate that. (Field notes, conversation with a healthcare assistant during observation)
Another strategy was to rely on the sense of duty that some copatients felt towards the confused older patients. This would enable the healthcare professional to feel more in control as they would be able to spend some time away from the situation. As Tina explained:
The nurses seemed to bring everyone together and it was a case [of] … “If you see so and so trying to get out of bed or be in distress ring your bell, will you?”. (Tina, daughter of Eric)
Finally, some healthcare professionals appeared to be trying to gain a sense of control by taking actions that were harmful to the sense of personhood of the confused older patient. These actions tended to be associated with poor communication with both family carers and patients alike and gave the impression that the member of staff was placing their own needs before those of the patient.
There were a number of occasions where healthcare professionals chose not to engage with the confused older patient and their family members even though an opportunity presented itself. Doreen found staff officious and stand-offish when visiting the ward outside of visiting time:
…when we got up there [to the ward] and said oh we've come to see Richard, “oh well we can't let you in, it's not visiting hours, visiting hours is between so and so and so and so”. And I said, “I didn't say I wanted to see him, I want to know how he is?” “Oh well I can't tell you that”. And she said, “would you like me to go and get somebody that can?” And I was like, “yes, please”. (Doreen, wife of Richard)
There were occasions when communication seemed to deteriorate further, resulting in curt comments or expression of impatience. On this occasion, John thought he had his glasses with him when he arrived to the ward, but the staff nurse (SN) thought otherwise:
SN: I was here when you were admitted last night, when, you didn't have your glasses then.
John: I think I did.
SN: You were very poorly, you didn't have them then, we'll have to agree to disagree. (Field notes, ward observation)
In both of these examples, the healthcare professionals appeared to be seeking to gain a sense of control by minimising communication with the goal of moving away from the situation as quickly as possible. Where healthcare professionals had experienced difficulty with the behaviour of the confused older patient, some reported this behaviour to the family carer. This was often less of an attempt at information sharing but rather an expression of frustration:
The odd time they'd say like, “Oh, she's been playing up you know, she's been shouting down”. (Alma, daughter of Patricia)
There were also occasions when it appeared that nursing staff took action to contain or curtail the activities of the confused older patient, giving them a greater feeling of being in control because they knew what the individual was doing and where they were:
Aiden was sitting on a comfy chair with wheels at the nurses’ desk at the end of the bay. I got the impression that he was placed in this position so that he would not stand up or fall out of the chair. (Field notes, ward observation)
In addition, some healthcare professionals tended to prioritise the needs of other patients over those of people with dementia. During a brief conversation as part of an observation, a deputy ward manager explained the dilemma she faces in trying to balance the needs of all patients:
She [the deputy ward manager]…says that whilst she doesn't like putting dementia patients in side rooms she can't have wandering patients with sick patients who are recovering from surgery. (Field notes, ward observation)
Finally, there appeared to be instances where action by healthcare professionals seemed to be best described as unprofessional behaviour. This presented itself as either mockery or unsympathetic communication in the face of distress. During a ward observation, a confused older patient became distressed when being assisted onto the weighing scales:
He is agitated and frightened, crying with tears down his face. Not one member of staff offer any comfort or reassurance. The staff nurse tuts and reprimands him for losing more weight. The tears continue. (Field notes, ward observation)
In another example, Albert was teased by healthcare professionals:
His lunch arrived. A member of staff went to fetch him from the nurses’ station. While accompanying him, she commented to another member of staff, “He's just helping the doctors with their diagnosis”. (Field notes, ward observation)
In these situations, healthcare professionals appeared to be gaining control by remaining detached from the emotional needs of the person they were caring for, again placing their own needs above those of the patient.
This study suggests that healthcare professionals find the admission of patients with cognitive impairment to be disruptive and that they respond to this disruption in ways that appear to enable them to feel in control. These findings stem from a study that was larger than any previous work undertaken in this area. The sample included older people with a range of mental health problems, but predominantly delirium, dementia or both. Only a third of carers invited to be interviewed agreed. While it is difficult to be precise about the reasons for this relatively low response rate, it should be noted that potential participants consented during the early stages of the stay in hospital but were not approached for interview until a few weeks after the discharge. In addition, carers had a wide range of relationships, backgrounds and competing priorities on their time. Some carers were recently bereaved; others had negotiated transitions to new care arrangements or care homes. Despite the relatively low response rate, we are satisfied that data saturation was achieved.
The findings support the contention in the literature that the admission of somebody with cognitive impairment to an acute ward is disruptive to healthcare professionals. This is because working with people in these situations is both physically and mentally demanding (Eriksson & Saveman 2002) and often takes place in areas that have high workloads, insufficient staffing levels and inappropriate physical environments (Dean 2011). In addition, healthcare professionals tend to have an ‘acute care’ mindset that does not take account of the specific needs of people with cognitive impairment (Eriksson & Saveman 2002).
Part of the complexity of caring for people with cognitive impairment, especially dementia in acute settings stems from an acute care focus on the physical diagnosis, whereas the needs of the person with dementia require highly skilled assessment and care planning designed to coordinate the physical and mental health needs of the individual (Bezzant 2008). However, nursing staff appear to lack these skills (Adams & Richardson 2005) and tend to spend less time with patients who have dementia than with those who do not (Eriksson & Saveman 2002). This is despite evidence that patients with cognitive impairment have greater need for assistance with activities of daily living (Goldberg et al. 2012). The lack of skilled intervention has a tendency to escalate any behaviour which is perceived as challenging (Kitwood 1997).
Healthcare professionals responded to disruption in three ways: by acting to preserve the personhood of the individual, by seeking to protect themselves from the stresses associated with caring for the person with cognitive impairment, and by suspending the personhood of the individual. Actions aimed at preserving the personhood of the patient included incorporating approaches to caring as suggested by Zingmark et al. (2002) aimed at promoting confirmation, familiarity and communion (coming together). We argue that such interventions give healthcare professionals a sense of control because, when done well, they give the healthcare professionals a sense of accomplishment and increase their feelings of self-efficacy (Duffy et al. 2009).
Where healthcare professionals do not have sufficient personal resources to meet the needs of people under their care, they have a diminished capacity to be effective in their role (Leeson 2010). This was reflected in occasions where healthcare professionals appeared to have self-protection as the main focus of their actions: they did not work actively against the patient, but this appeared to be a secondary consideration to their own well-being. The findings suggest that some staff seemed to be active in their suspension of personhood of the person with dementia. In these instances, there was some evidence of malignant social psychology as described by Kitwood (1997) – the data outlined above include examples of withholding, mockery and infantilisation.
This response to disruption seems to be linked to emotional labour and burnout (Mann & Cowburn 2005). The concept of emotional labour was developed by Hochschild (1983), who argued that many people who work in service industries are required by their employees to express particular emotions, irrespective of the emotions that they might be feeling. Numerous applications of this concept have been made to nursing (e.g. James 1992, Gray 2009, Bailey et al. 2011) as many nurses offer both physical and emotional care to patients where their emotional expression needs to be contextually appropriate (Mackintosh 2007). This is particularly relevant to work with people who have dementia where patients require order, peace and serenity (Borbassi et al. 2000) but may engage in behaviour that is perceived to be highly disruptive (Bezzant 2008). The net result is that interactions with some patients do not promote appropriate emotional responses on the part of the nurse (Martinez-Inigo et al. 2007). Where healthcare professionals respond in a contextually appropriate manner, this leads to emotional dissonance, if the emotions expressed by the member of staff are not genuinely felt (Drach-Zahavy 2009). There is evidence of this within this study where participants have commented on the lack of reciprocity in some relationships, especially with people with dementia. Ultimately, this can cause emotional exhaustion, feelings of depersonalisation and burnout in healthcare professionals (Huynh et al. 2008, Leeson 2010). We argue that these issues might contribute to situations where healthcare professionals take actions that suspend the personhood of individuals to protect themselves.
This raises the question of what health organisations might do to reduce or eliminate staff–patient interactions that suspend personhood. One solution might be to take a zero tolerance of staff that fail to respect individual dignity and remove them from practice. However, without wider change, staff will be disciplined and dismissed only to be replaced by other people who act similarly, especially if other pressures persist, such as the organisation's approach to risk management. We argue that priority should be given to staff education, staff selection and resources to support nurses on an ongoing basis (e.g. clinical supervision).
Staff need to be educated both in how to make their care more person-centred and in how to develop emotional intelligence in their approach to care. It is recognised that healthcare professionals in acute areas are not adequately prepared for their work with older people (Tadd et al. 2011) – a deficit that incorporates both resources knowledge to work effectively (Cornwell 2012) and that relevant education is essential to ensure good standards of care for people with dementia (Innes 2000). Effective training will have the additional benefit of increasing the self-perceived level of competence of staff, which in turn serves to reduce staff stress and burnout (Acker 2010). This would be enhanced by training that explores emotional intelligence (Goleman 2001) that would leave them better placed to meet the social, interpersonal and emotional demands of their roles (Bailey et al. 2011).
Some commentators suggest there is a need for organisations to review staff selection processes to ensure that new employees have the appropriate personal qualities for compassionate care (NHS Confederation 2012). However, multiple competing influences conspire to cause less than satisfactory staff responses. Drach-Zahavy (2009) argues that individual healthcare professionals carry a set of personal attributes relating to their professional identity, skills and abilities to conduct tasks, personal and professional goals, and professional orientations and values. These influence the extent to which individual healthcare professionals are able to provide deep emotionally engaged care (Leeson 2010) as opposed to care that focuses on its physical and professional aspects (Mackintosh 2007). This in turn influences both the appropriateness of approach to care and the level of stress experienced by the member of staff (Naring et al. 2006, Drach-Zahavy 2009).
However, recruitment and staff training will not be enough to change care practice unless there is a deter-mination at an organisational level to facilitate a more person-centred approach to care (Lintern et al. 2000). This involves working to overcome the barriers of inappropriate ward environments, multiple ward moves and high workloads (Tadd et al. 2011). Furthermore, there is a need to revisit organisational structures that prioritise management of secondary risk such as falls, infection control and discharge at the expense of experience and activity. Without this, the capacity of the member of staff to be effective will be diminished and increase the risks of stress and burnout (Leeson 2010).
The need for attention and maintenance of function in the patient with cognitive impairment are greater than for other patients. Greater need requires more resources to achieve similar outcomes. These care needs are not met by technology as in the case of a patient in an ITU, yet they are needs that affect important outcomes not only with respect to the hospital setting but also because what happens during hospitalisation ripples out across the entire health and social care systems. Not providing the care we know is needed for this significant subgroup of patients could be interpreted as discriminatory. The additional resources needed to support the greater need in the patient with cognitive impairment in hospital have not yet been justified in terms of outcomes, but the moral imperative to provide appropriate care for the presented need is certainly justified.
This review of staff responses to people with cognitive impairment in the acute setting (as interpreted by researchers, patients and relatives) found that healthcare professionals tended to view working with people with cognitive impairment as being disruptive. They responded to this disruption in a number of ways: by acting to preserve the personhood of the individual; by seeking to protect themselves from the stresses associated with caring for them; and by using the suspension of the personhood of the individual as a protective mechanism. The healthcare professionals who fell into the latter category in their responses appeared to be displaying evidence of burnout, possibly as a result of dealing inappropriately with the emotional labour involved in working with people with cognitive impairment in the acute setting.
While there is obviously a need to challenge poor practice, there is an equally strong need for positive development work with healthcare professionals who work in acute hospitals with people with cognitive impairment. There needs to be a commitment throughout such organisations to care that promotes personhood and individual healthcare professionals’ needs supporting in developing their skills for working with, and developing the emotional intelligence to be effective in meeting the needs of, people with cognitive impairment.
The authors acknowledge the work of Dr Fiona Jürgens and Dr Bella Robbins in contributing to data collection for this study.
Study design: DP, JG, RH; data collection and analysis: DP, PC and manuscript preparation: PC, DP, RH, JG.
This project was funded by the National Institute for Health Research Health Services and Delivery Research Programme (project number 08/1809/227). The views and opinions expressed therein are those of the authors and do not necessarily reflect those of the HS & DR Programme, NIHR, NHS or the Department of Health.
No conflict of interest has been declared by the authors.
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