Caregiver Distress in Home Palliative Care

Abstract

Aim: This study aims to determine the symptom burden of caregivers who were following their loved ones at home and factors associated with this burden. Methods: From a consecutive number of patients followed at home by a specialistic palliative care team, a sample of 46 couples of patients-caregivers was screened. Epidemiological data of both patients and caregivers were collected, also including some variables, such as the level of religiousness, education, economic conditions, and financial distress. The Edmonton Symptom Assessment System (ESAS) was measured in both patients and caregivers. Caregivers were asked to provide a comment in a semi-structured interview, about “what do you think of your loved one’s suffering?” They were also invited to release any further comment. Results: Caregivers’ symptom burden was relevant. Sleep disturbances were even more relevant in caregivers. Caregivers with a lower level of education and financial distress experienced more global symptom burden. Caregivers manifested a deep sense of injustice and gripes regarding previous hospitalizations. Conclusion: There is an association between patient-reported severity of symptoms and caregiver symptoms. These data suggest delivering support to those caregivers who express higher levels of symptoms. There is a need for further research to explore the possible interventions to mitigate caregivers’ symptom burden.