The experiences of caregivers of patients with delirium, and their role in its management in palliative care settings: an integrative literature review

Finucane, Anne; Lugton, Jean; Kennedy, Catriona; Spiller, Juliet

doi:10.1002/pon.4140

Cited by 107 publications

(112 citation statements)

References 57 publications

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“…Other times, the approach might involve attempting to meet the patient where they were, cognitively, and offering reassurance there. These findings speak directly to a tension identified in the delirium care‐giving literature by Finucane, Lugton, Kennedy, and Spiller () with respect to orientation interventions. Based on an integrative review of the literature about care‐givers’ experiences of delirium in terminally ill patients, these authors conclude that ‘Perspectives on whether it is best to re‐orient the patient vary with some studies taking the view that re‐orienting is helpful and others believing that it is best to respect the patient's subjective world even in delirium’ (p. 298).…”

Section: Discussionsupporting

confidence: 67%

Relational ethics of delirium care: Findings from a hospice ethnography

2018

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Delirium, a common syndrome in terminally ill people, presents specific challenges to a good death in end-of-life care. This paper examines the relational engagement between hospice nurses and their patients in a context of end-of-life delirium. Ethnographic fieldwork spanning 15 months was conducted at a freestanding residential hospice in eastern Canada. A shared value system was apparent within the nursing community of hospice; patients' comfort and dignity were deemed most at stake and therefore commanded nurses' primary attention. This overarching commitment to comfort and dignity shaped all of nursing practice in this hospice, including practices related to end-of-life delirium. The findings of this study elaborate the ways in which hospice nurses interpreted and responded to the discomfort of their patients in delirium, as well as the efforts they made to understand their patients' subjective experiences and to connect with them in supportive ways. In addition to what is already known about clinical assessment and treatment of delirium in palliative care settings, the findings of this study offer points of reflection for nurses anywhere who are contending with the relational challenges that delirium presents in end-of-life care.

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Section: Discussionsupporting

confidence: 67%

Relational ethics of delirium care: Findings from a hospice ethnography

2018

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“…Factors that determine caregiver burden in delirium are likely to be complex, nuanced, and affected by underlying dementia; and they are an important area for future investigation. The unpredictability, rapid onset, and potentially ominous effect on recovery and rehabilitation associated with delirium may create stressors distinct from the more familiar ADRD burden model of slower, more predictable, cognitive decline and loss of function . Established approaches of caregiver coping may be inadequate or less defined in an unfamiliar situation, leaving the delirium caregiver feeling loss of control, shock, fear, and distress .…”

Section: Discussionmentioning

confidence: 99%

The Caregiver Burden of Delirium in Older Adults With Alzheimer Disease and Related Disorders

Fong

Racine

Fick

et al. 2019

J American Geriatrics Society

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Objectives: To measure the burden of delirium in older adults with or without Alzheimer disease or related disorders (ADRD) Design: Prospective, observational cohort Setting: Inpatient hospital, study participants’ homes Participants: A subset (n=267) of older medical and surgical patients and their caregivers enrolled in the Better Assessment of Illness (BASIL) study Measurements: Delirium burden was measured using the DEL-B instrument (range 0-40, higher scores indicate greater burden) in caregivers (DEL-B-C) and patients (DEL-B-P) one-month after hospitalization. Severity of cognitive impairment (Montreal Cognitive Assessment, MoCA), delirium presence (Confusion Assessment Method, CAM) and delirium severity (CAM-Severity, CAM-S) were measured during hospitalization and at one-month followup. ADRD diagnosis was determined by a clinical consensus process. Results: For patients with (n=56) and without (n=211) ADRD, both DEL-B instruments had good internal consistency. DEL-B-C scores had a median (interquartile range, IQR) among caregivers of patients with and without ADRD of 9 (5-15) and 5 (1-11), respectively (p<0.05). If the patient developed delirium, caregivers experienced greater burden (β[delirium×ADRD]=−0.29, p=.42), regardless of ADRD status. Further, caregiver burden was modestly correlated with patient MoCA scores (Spearman correlation coefficient, rho=−.18, p=.01). Patients with ADRD who developed delirium self-reported less burden than those without ADRD (β[delirium×ADRD]=−0.67, p=.044). As with caregivers, delirium burden was modestly correlated with patient MoCA score (rho=−.18, p=.005) and correlated with the CAM-S in patients without ADRD (rho=.38, p<.001) but not for patients with ADRD (rho=−.07, p=.61). Conclusions: Delirium resulted in the same degree of increased caregiver burden regardless of whether or not a patient had ADRD, signifying delirium is equally stressful to caregivers, even among those with experience caring for someone with a chronic cognitive disorder. Delirium burden is only modestly associated with degree of cognitive impairment, suggesting that other aspects of delirium contribute to burden.

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“…Delirium is common at the end of life. DID in palliative care or hospice settings has been explored most by characterising experience of distress by relatives and healthcare staff [21,30,31], in part because patients themselves do not survive to be able to recall their delirium or distress. Impact on carers is discussed later in this review.…”

Section: Patient Factorsmentioning

confidence: 99%

Distress in delirium: causes, assessment and management

2019

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Key Summary pointsAim Distress in delirium causes significant morbidity for patients and their relatives, but it remains under recognised. Findings This review discusses the current literature regarding distress in delirium: its aetiology, available assessment tools and potential avenues for management. Message The distress experienced in delirium has long-term psychological effects on patients and their carers, and requires greater understanding and acknowledgement in clinical practice. AbstractPurpose Delirium is a common clinical syndrome associated with increased physical and psychological morbidity, mortality, inpatient stay and healthcare costs. There is growing interest in understanding the delirium experience and its psychological impact, including distress, for patients and their relatives, carers and healthcare providers. Methods This narrative review focuses on distress in delirium (DID) with an emphasis on its effect on older patients. It draws on qualitative and quantitative research to describe patient and environmental risk factors and variations in DID across a number of clinical settings, including medical and surgical inpatient wards and end of life care. The article provides an overview of the available distress assessment tools, both for clinical and research practice, and outlines their use in the context of delirium. This review also outlines established and emerging management strategies, focusing primarily on prevention and limitation of distress in delirium. Results Both significant illness and delirium cause distress. Patients who recall the episode of delirium describe common experiential features of delirium and distress. Relatives who witness delirium also experience distress, at levels suggested to be greater than that experienced by patients themselves. DID results in long-term psychological sequelae that can last months and years. Preventative actions, such pre-episode educational information for patients and their families in those at risk may reduce distress and psychological morbidity. Conclusions Improving clinicians' understanding of the experience and long term psychological harm of delirium will enable the development of targeted support and information to patients at risk of delirium, and their families or carers.

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The experiences of caregivers of patients with delirium, and their role in its management in palliative care settings: an integrative literature review

Cited by 107 publications

References 57 publications

Relational ethics of delirium care: Findings from a hospice ethnography

Relational ethics of delirium care: Findings from a hospice ethnography

The Caregiver Burden of Delirium in Older Adults With Alzheimer Disease and Related Disorders

Distress in delirium: causes, assessment and management

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