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

OBJECTIVES: To explore the experiences of caregivers of terminally ill patients with delirium, to determine the potential role of caregivers in the management of delirium at the end of life, to identify the support required to improve caregiver experience and to help the caregiver support the patient. METHODS: Four electronic databases were searched—PsychInfo, Medline, Cinahl and Scopus from January 2000 to July 2015 using the terms ‘delirium’, ‘terminal restlessness’ or ‘agitated restlessness’ combined with ‘carer’ or ‘caregiver’ or ‘family’ or ‘families’. Thirty‐three papers met the inclusion criteria and remained in the final review. RESULTS: Papers focused on (i) caregiver experience—distress, deteriorating relationships, balancing the need to relieve suffering with desire to communicate and helplessness versus control; (ii) the caregiver role—detection and prevention of delirium, symptom monitoring and acting as a patient advocate; and (iii) caregiver support—information needs, advice on how to respond to the patient, interventions to improve caregiver outcomes and interventions delivered by caregivers to improve patient outcomes. CONCLUSION: High levels of distress are experienced by caregivers of patients with delirium. Distress is heightened because of the potential irreversibility of delirium in palliative care settings and uncertainty around whether the caregiver–patient relationship can be re‐established before death. Caregivers can contribute to the management of patient delirium. Additional intervention studies with informational, emotional and behavioural components are required to improve support for caregivers and to help the caregiver support the patient. Reducing caregiver distress should be a goal of any future intervention.© 2016 The Authors. Psycho‐Oncology Published by John Wiley & Sons Ltd.