Hospital and nursing home patients’ experiences with delirium assessments: A qualitative content analysis

Abstract

To explore hospital and nursing home patients’ experiences with delirium assessments and better understand their attitudes, we used a qualitative method to summarise, in everyday terms, specific events observed by researchers and experienced by patients. We performed participant observations of delirium assessments of eight patients and conducted individual semi-structured face-to-face interviews with seven other patients. We carried out content analysis using an inductive approach. Our findings indicate that patients approached delirium assessment with initial scepticism due to a lack of knowledge. Their scepticism changed to complete acceptance after the assessment’s purpose was explained. However, some patients gave up on the assessment due to cognitive challenges, lack of energy, fatigue, or language barriers. Patients appreciated that professionals were interested in their mental and physical well-being. Despite initial scepticism, the patients found the delirium assessment valuable when they better understood its purpose. Thus, healthcare professionals should provide patients with relevant information about delirium assessments.

Keywords

delirium assessment nursing qualitative research screening semi-structured interview

Introduction

The number of delirium assessment tools has increased significantly over the past few decades and their use is recommended worldwide. Unfortunately, nurses do not often conduct delirium assessments.¹ Patients’ reservations towards delirium assessments seem to affect nursing practices with regard to screening.² Addressing barriers to routine screening is important for effective implementation. A better understanding of patients’ attitudes could be key to implementing routine screenings.

Background

Delirium is a common neuropsychiatric disorder in both community and hospital populations. In Latin, ‘dēlīro’ means ‘I deviate from the furrow’, and delirium is defined in medical terms as a disturbance in attention, awareness, and cognition that develops over a short period of time (hours to days) and tends to fluctuate over the course of the day.³ The disturbance is not due to pre-existing, established, or evolving dementia. The incidence of delirium is 1–2% in the general population,⁴ 11–29% in hospitalised medical patients, 11–51% in surgical patients, and as high as 82% among patients in intensive care units (ICUs).⁵ In elderly patients, the incidence reaches 50% in hospitalised patients. Delirium is associated with increased mortality, longer hospital stays, and long-term cognitive impairment.⁶ Nevertheless, many cases go undiagnosed.⁴ In Dutch nursing homes and residential homes, the prevalence of delirium is 8.9% and 8.2%, respectively,⁷ and in a study on lengthy stays in Canadian nursing homes, over the course of 32 months, 40.4% of patients experienced delirium.⁸ Nurses’ knowledge about delirium in general and risk factors leading to delirium does not increase with graduation, higher levels of education, or years of nursing practice.⁹ This indicates that delirium is challenging to identify. Moreover, nurses describe how difficult they find caring for patients who exhibit behaviours that differ from normal, such as reduced eye contact, use of abusive language, or irritability. These cues might indicate delirium but could also be related to pain or emotional reactions to disease.¹⁰

A number of published studies explore patients’ delirium experiences.^11–13 Most patients recall emotions such as anxiety, fear, vulnerability and shame, as well as higher levels of distress, even when there is a diagnosis of dementia.¹¹ Memories of delirium persist relatively unchanged for at least six months¹⁴ and are often lifelong memories.¹⁵ Terrifying experiences involving a high degree of mistrust and suspicion of other people and environments can seem so real that they stay with patients long after the delirium is gone.¹² In interviews of more than 100 former ICU patients, the interviewer was often the ﬁrst – and sometimes only – person to listen to the patients’ accounts of their experiences with delirium.¹⁶ Some patients deny having delirium or will not talk about it, whereas others feel shame and guilt when recalling their experiences.¹³ Understanding patients’ memories of delirium is beneficial to nurses who care for anxious, upset, or agitated patients.^13,16

More than one delirium assessment tool per year has been invented and validated over the past decade,^17–25 and all recent studies describe delirium assessments as low-burden, sensitive tools.²⁶ There is a lack of evidence that indicates delirium assessments lead to better outcomes, but it seems logical that identifying which patients suffer from delirium is essential for optimising care and treatment. Many patients are already familiar with assessments such as the Early Warning Score (EWS),²⁷ which includes data on temperature, blood pressure, pulse and heart rate, and level of consciousness (alert, vocal, in pain, unresponsive). Unfortunately, the EWS does not indicate whether delirium is present.

Despite strong evidence related to the health risks posed by delirium and the availability of numerous validated delirium assessment tools, nurses must still address challenges regarding routine delirium screening implementation. Limited knowledge and a lack of delirium assessment skills are often identified as challenges to implementation, and studies usually conclude that more individual education and training is needed.²⁸ However, one study on implementation showed that addressing barriers to routine screening can be key to effective implementation.²⁹ One well-known barrier is the expectation that patients will have a negative attitude towards delirium assessment.² Some nurses even avoid performing delirium assessments because they are concerned about how patients will perceive the assessment.

Study aim

The aim of the study was to explore hospital and nursing home patients’ experiences with delirium assessments to better understand their attitudes.

Materials and methods

Design

We used a qualitative method triangulation approach³⁰ and a descriptive phenomenological design to summarise, in everyday terms, specific events observed by researchers and experienced by patients.³¹ Qualitative descriptive design focuses on subjects and context and emphasises variations and similarities, such as within and between parts of a text. It offers opportunities to analyse manifest and descriptive content, as well as latent and interpretative content.³² The intention was to explore and understand individuals’ experiences, thoughts, reactions and attitudes regarding the specific phenomenon. We continued the data collection until no new data or themes appeared.

We used method triangulation to obtain a comprehensive understanding of patients’ experiences, thoughts, reactions and attitudes towards delirium assessment. We first observed participants in a nursing home. Patients in nursing homes require significant care due to acute illness, a discharge from the hospital (‘step down unit’), or because they are waiting for a permanent nursing home. Then, we conducted individual semi-structured interviews with patients in a hospital ward to obtain variation in the data. All participants at both locations were screened for delirium using the Brief Confusion Assessment Method (bCAM),²⁰ which consists of four features:

Mental state is assessed for alterations or fluctuations throughout the day. This is primarily determined through surrogate interviews or by staff with knowledge of the patient.

Inattention is assessed by asking the patient to recite months backwards from December to July. If the patient makes > 1 error or is unable or refuses to perform the task, inattention is present.

Altered consciousness level is determined using the Richmond Agitation-Sedation Scale.³³

Disorganised thinking is assessed by asking the patient to answer yes or no to four questions and respond to a command: Will a stone float on water? Are there fish in the sea? Does one pound weigh more than two pounds? Can you use a hammer to pound a nail? ‘Hold up this many fingers’ (staff holds up two fingers). ‘Now, do the same thing with the other hand’ (staff does not demonstrate).

Patients are considered delirious if features 1 and 2 are present and either feature 3 or feature 4 is present.

Sampling and patients

We purposefully sampled Danish-speaking patients who had experienced delirium assessment using the bCAM, did not have delirium, and were not terminally ill. Patients were either observed or interviewed by the first author. We performed participant observation³⁴ at the nursing home. The head nurse at the nursing home acted as a gatekeeper by identifying and approaching the patients. All patients provided informed consent to participate. Patients at the hospital were invited for a qualitative face-to-face interview. The patients’ primary nurse from the hospital ward contacted eligible patients, who, after obtaining study-specific information, were invited to participate. None of the invited patients declined participation. Nurses or nursing assistants performed the assessment after meticulous training. No further information about participants, including name, age, or gender, was given to the authors. The data were collected between October 2016 and May 2017.

Data collection

Participant observations

We used participant observation to explore the patients’ reactions to delirium assessment. We used moderate participation to find a balance between being an insider and an outsider in the research area. We held informal conversations as a part of our observations in the nursing home. In addition, we took field notes during the observations and supplemented these with a written reflection immediately afterwards.³⁴ Observations lasted a maximum of one hour per participant and included the delirium assessment and informal conversations with the participant and staff. We observed how staff introduced the assessment, how patients commented on and reacted to the introduction, how patients responded to the assessment, and what patients commented on afterwards. We urged the staff to provide us with any comments regardless of the success of the bCAM assessment or whether delirium was diagnosed.

Interviews

The patients underwent individual semi-structured face-to-face interviews³⁵ at their bedsides in one regional hospital, no more than one hour after their most recent delirium assessment. The interviews were recorded on a digital voice recorder and transcribed verbatim in Danish by a research assistant. We prepared interview questions as a guide to encourage participants to remain focused. The main questions in the interview guide addressed what patients thought about the delirium assessment: What did you experience when you were screened for delirium? Can you describe the situation? What do think of the assessment? Why do you think the staff are interested in signs of delirium?

Ethical considerations

The study complied with the Declaration of Helsinki’s guidelines for human experimentation.³⁶ Based on Danish law and the study design, neither approval from the national ethics committee nor registration at ClinicalTrials.gov were necessary. No information about the patients’ full names, dates of birth, medical conditions, or any other personally sensitive information was collected. According to Danish law, qualitative studies must be registered only if the project involves the study of human biological material, contains personally identifiable data, or is part of a clinical trial. Patients were not included in the study if they were assessed as being delirious.

Both authors have previous experience with conducting research interviews and participant observation. Neither author has been involved in the clinical care of the selected patients. The first author, who is a registered nurse, conducted all the interviews and carried out the participant observations. She had no relationship to the participants prior to the commencement of the study.

Data analysis

We carried out a qualitative content analysis³⁷ of data from interviews and observations from September to December 2018. We manually reviewed and evaluated the transcribed interviews and field notes from participant observations using an inductive approach and wrote them up using Microsoft Word. Both authors carefully read each transcript and note regarding attitudes, reactions, and experiences related to delirium assessments. After an open coding of the first three transcriptions, each author limited these developing codes as much as possible. We coded the remaining transcriptions using these initial codes and added new codes when data did not fit existing codes. Then, we compared and discussed the codes. When no further codes emerged, the authors recorded the first transcripts and notes and sorted the codes into categories. Next, we organised the emergent categories and grouped them into meaningful themes. Hsieh and Shannon defined themes as aspects that relate to each other.³⁸ During working seminars and regular meetings, we reviewed and discussed the coding structure throughout the analysis process until they reached an agreement. In the results section, we designate specific participant observations and interviews using ‘o’ and ‘i’, respectively, followed by the patient ID.

Results

We carefully selected seven participants (three women and four men) for interviews at two medical wards. The interview participants’ ages ranged from 50 to 81 years (mean 68 years). Three participants came from an endocrinology medical unit, and four came from a pulmonary medical unit. Of these, one had his wife present, and another had a friend present, but they did not participate in the interviews. The presence of a relative did not seem to influence the patients. Interviews lasted approximately 30 minutes.

Later, we carefully selected eight participants (five women and three men) aged 56–94 years (mean 79 years) at two emergency departments at one nursing home for the participant observations. Observations lasted a maximum of one hour. Our observations also contained nurses’ comments on participants’ attitudes, reactions, and experiences related to delirium assessments. Some comments from the nurses concerned barriers related to completing the delirium assessment due to cognitive challenges from illnesses, such as dementia, schizophrenia, Parkinson’s disease, and language. Other comments concerned difficulties encountered when completing the assessment.

We found that the participants were initially sceptical, but that this changed as they gained knowledge about the purpose of the delirium assessment. We also found that some participants in the nursing home gave up on completing the assessment. We present our findings from the data analysis under three meaningful themes: initial scepticism, complete acceptance, and giving up.

Initial scepticism

Lack of knowledge about delirium and the reasons for confusion influenced the participants’ first impressions, causing them to be sceptical. Most participants compared the assessments with those for dementia, something all of them had heard about, but no participants knew about delirium or its causes. Moreover, the participants considered having dementia undesirable. However, the participants expressed their scepticism in various ways. One told about his difficulties in understanding the assessment’s purpose:

I think the questions are strange. The one with months is hard. It’s also difficult for people who are not confused, I guess. I do not understand … [why screening is necessary]. (i8)

Other participants expressed their scepticism through ridicule or an unpretentious laugh. The laugh indicated rejection that was justified by not needing a delirium assessment. Some participants told jokes to ease their feelings of embarrassment. One patient commented, ‘I thought I was going to be psychoanalyzed’ (i4). Another participant assumed such questions were childish: ‘Well, that’s really silly [laughing]’ (i5).

Other participants initially expressed rejection because they did not consider themselves the target group for such an assessment, which they felt was only for people with dementia. Their understanding stemmed from situations related to relatives suffering from dementia. Participants who think of themselves as sharp or normal in terms of behaviour may even regard a delirium assessment as insulting. One participant stated, ‘Well, if you are of normal intelligence, you can answer such a thing [delirium assessment]; I mean, I don’t need it’ (i3). When the nurse introduced the assessment, some participants expressed surprise rather than rejection or acceptance; this the assessment was something the participants needed time to consider or understand. One simply said, ‘I suppose it is a good idea’ (i5). Another accepted it with reservations: ‘As long as it does not take too long, the assessment is fine with me’ (o5). However, the participants’ initial scepticism did not persist.

Complete acceptance

After the participants were assessed for delirium, they were generally more open-minded about it. Furthermore, most patients found the delirium assessment acceptable and relevant when they learned more about it. Their attitudes changed from scepticism to complete acceptance based on their reflections. One participant said, ‘Funny questions, but now [hindsight], I think they are really good and important questions’ (i8). However, participants expressed this acceptance in various ways.

Some participants expressed confidence in the concept of taking care of body and mind once they realised this was the issue. For example, one said, ‘It is good that nurses are also interested in the psyche’ (i3). Although none of the participants were staying at the nursing home or hospital because of mental disorders, they all considered mental health as important as physical health. However, the participants expressed this only after the purpose of the delirium assessment was explained. One participant said, ‘I find it important that the staff also pay attention to my mental health’ (i1). The participants accepted the delirium assessment as harmless and necessary if mental health was at risk regardless of assessment method (bCAM by a nurse or interview with a consultant). Participants mentioned the concreteness of the assessment as something positive, and some even found the assessment enjoyable.

Most participants considered coherence between body and mind important. Many expressed a common understanding of the importance of taking care of both using phrases such as ‘If you have a good psyche, you will heal more easily’ (i5). The participants expected the staff to take care of them and accepted the delirium assessment as a necessary aspect of this care. The measurement of the EWS assessment was familiar to the participants, and they expected the nurses and doctors to do what was necessary to optimise their health. Participants who had experienced confusion were especially attentive to the need for additional care: ‘You do something you would not do in a “sober” condition’ (o1).

The possibility of declining to participate was highlighted as quite positive, both by participants who had problems with certain tasks, such as reciting months backwards, and by others who completed the assessment with no problems: ‘It’s nice to know you can say no to something you know you can’t [do]’ (i2). The participants considered the assessments’ duration to be acceptable and were willing to repeat them. After the assessments, participants said things such as ‘It was not that bad’ (i3). At the same time, some commented, ‘It might be difficult for some [people]’ (i8). Some participants considered the assessments a welcome break in their daily routines. One said, ‘Actually, it was a joy’ (o4).

Giving up

Nurses at the nursing home commented on the influence of cognitive challenges (o8) and participants’ lack of energy or fatigue (o2) on their ability to complete the assessment. When fatigued, patients gave up on the inattention test (reciting months backwards) almost before getting started (o3). A participant with Parkinson’s disease who demonstrated latency and slow reactions also gave up on the inattention test (o6).

Some nurses gave up because patients who were not native speakers encountered language barriers (o8). They found it difficult to answer yes or no to questions such as ‘Will a stone float on water?’ and ‘Does one pound weigh more than two pounds?’ These questions were designed to reveal disorganised thinking, but in this case, the participants simply did not understand them. Some participants also gave up during the interviews and observations. One patient said, ‘She wanted me to recite the months backwards, which I can’t, and then there was a sum to do, which you can easily make a mess of …’ (i2).

Discussion

This study is the first to describe patients’ experiences with and attitudes towards delirium assessments. Using qualitative content analysis, we identified three themes: initial scepticism, complete acceptance and giving up. We found that when the participants overcame their initial scepticism, they wanted the staff to monitor them for delirium.

In addition, the patients liked that the nurses concerned themselves with both physical and mental health. This finding corresponds with the Danish national clinical guidelines,³⁸ which recommend systematic screening with an instrument and propose using the bCAM. So far, no study has provided evidence that delirium screening saves lives. Nevertheless, clinicians should conduct thorough evaluations for potential causes of delirium, particularly those that are reversible in high-risk patients,³⁹ and thereby improve outcomes.

In our study, some patients were confused without necessarily being assessed as delirious using bCAM. Nevertheless, some of the patients would need further examination by a physician to identify whether their confusion was instead dementia. Morandi et al. found in a mixed-method study with 30 patients who had been delirious superimposed to dementia, that half of them remembered being confused.¹¹ The test used by Morandi et al. was not bCAM, but had several similar elements. In the qualitative part of their study, some patients described predominantly memories of delirium emotions as negative, whereas others could not believe that they had been delirious.

In our search for other studies to illuminate patients’ experiences with assessments we found an incredible amount of different delirium screening instruments.⁴⁰ In none of the studies had they asked the patients how they experienced or felt about the screening itself. One study indicates the importance of gathering the patients’ views on depression before diagnosing.⁴¹ Our study shows that patients felt that the troublesome nature of the bCAM screening was worth the effort, especially after an explanation of delirium was given to them, that it is a transient condition caused by acute illness, and is usually temporary and reversible.

Why has no one asked before what patients feel about screening? Pollard et al. found a high degree of mistrust and suspicion by patients of healthcare staff and the environment as part of the lived experience after delirium¹² which might challenge the staff attempting to screen for delirium even more. Although, a few of our patients gave up at part two in the screening, they appreciated that the nurses paid attention to both their physical and mental status. Therefore, despite initial barriers we found that there are additional benefits to delirium screening. The patients in our study did not experience the screening itself as very stressful. Since some studies^42,43 indicate that nurses are not able to discover delirium without a screening instrument, we suggest that screening should be implemented in both hospital and homecare settings.

One benefit of systematic daily screening is that nurses become aware of a range of symptoms that they do not seem to account for in their daily routines.⁴⁴ Our study investigated older patients in hospitals and acute care settings such as nursing homes. However, other researchers have found that older residents of long-term care facilities experience more pain and that antipsychotic drugs are administered at the onset of delirium. Pain monitoring and treatment may be important to reducing delirium in nursing homes.⁸

Patients did not mind talking about delirium. A previous study demonstrated that patients in general are thankful when professionals take the initiative to talk about delirium and listen to their ‘crazy stories’.¹⁶ Apparently, patients in our study preferred staff to take care of them holistically and mainly enjoyed the assessments.

Study limitations

Although we describe data collection and analysis separately in our study, interviewing participants, listening to the audio-recordings, reading the transcripts, and writing with reflection and understanding were continuous processes. We have collected data from one hospital and one nursing home. As in most qualitative research, our results should be considered in the contexts where they emerged, and they cannot necessarily be generalised to other settings or screenings. Some researchers criticise the inductive and descriptive approach for summarising empirical data without providing new insights.³¹ However, this study’s three themes contribute new insights into patients’ views on delirium assessments. The findings from our diverse materials are consistent and lead to the same conclusion.

Conclusion

Patients appreciate that professionals are interested in their mental and physical well-being. Despite their initial scepticism, patients find delirium assessments valuable when they better understand the assessments’ purpose. This indicates that barriers related to patients’ scepticism towards delirium assessments should be overcome by healthcare professionals.

Footnotes

Acknowledgements

We wish to thank the participants in this study for making this study possible. We also thank the staff of Vikærgården and Hvidovre Hospital for their help with contact to the participants. Finally, we thank nurse specialist Elsebeth Glipstrup and consultant Jens Nørbæk for assistance at Hvidovre Hospital.

Funding

This research received no specific grant from any funding agency in the public, commercial, or not-for-profit sectors.

Declaration of conflicting interests

The authors declare that there is no conflict of interest.

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