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.

Simultaneous care in oncology: Assessment of benefit in relation to symptoms, sex, and age in 753 patients

“…Indeed, as reported by Wright et al, perceptions of better end-of-life care are associated with earlier hospice enrolment, avoidance of ICU admission in the last 30 days of life, and deaths outside the hospital, among family members of elderly patients who died with lung or colorectal cancer (50). These findings are supportive of advance care planning consistent with patients' preferences (50,51) and may help both granting patients' wishes regarding the place of death (52) as well as reducing caregivers' distress (53). The role of oncologists is strategic not only for the proper management of SCOC patients but also for an accurate estimation of prognosis in order to avoid therapeutic aggressiveness at the end of life when not justified.…”

Comparing situational influences on differential healthcare utilization trajectories in patients on home palliative care: A qualitative study

“…Research suggests that various factors contribute to increased healthcare utilization, including age, gender, comorbidity, caregiver burden, the capacity of home-based palliative service, and advance care plans (Abraham and Menec 2016; Goldenheim et al 2014;Nguyen et al 2022;Phongtankuel et al 2017;Salam-White et al 2014;Sundararajan et al 2014;Tay et al 2021;Wang et al 2016b). Qualitative studies have shed light on the reasons behind heightened healthcare utilization, such as caregivers' limited ability to provide needed care, uncertainties about disease prognosis and mortality, and concerns regarding patient safety (Evans et al 2006;Mercadante et al 2022;Phongtankuel et al 2016). Although these studies provide valuable insights, their focus was exclusively on the frequency of hospitalizations during a cross-sectional period preceding death (such as the last 2 months of life), highlighting it as a negative indicator.…”