OBJECTIVE: to describe the level of uncertainty in illness in family caregivers of palliative care patients and detect associations between the profile of the caregiver and the levels of uncertainty.
METHOD: descriptive correlational study conducted with 300 family caregivers of hospitalized patients. The sociodemographic characterization of caregiver and patient was used to assess the caregiver profile, as well as the Uncertainty in Illness scale for family caregivers. Spearman's Rho correlation test was applied to detect associations.
RESULTS: the average score of illness uncertainty was 91.7 points. The analysis showed significant correlations between the level of uncertainty and patient dependence (r=0.18, p=0.001), symptom assessment (r=0.312, p<0.001), length of service as a caregiver (r=0.131, p=0.023), perception of support from health professionals (r=-0.16, p=0.048), family (r=-0.145, p=0.012) and religious support (r=-0.131, p=0.050).
CONCLUSIONS: there were high levels of uncertainty in caregivers about their patient's illness. These levels are associated with the health condition and symptoms of the patient who is cared for, the length of service as a caregiver and the perceived support from health professionals, family and religion.
Background and Aim: With chronic diseases on the rise, there is a growing demand for palliative care. The global landscape of the integration of palliative care into health-care systems is incipient, which leads to a lack of social awareness of this reality and consequently, to communication failures, particularly a conspiracy of silence. The aim of this study was to analyze the concept of conspiracy of silence in palliative care.
Materials and Methods: Walker and Avant method of concept analysis was used. Review and synthesis of literature supported the analysis process. Forty-seven articles were analyzed.
Results: Results showed that the conspiracy of silence in palliative care is a communication failure, typical of limited life expectancy prognosis, and involves patients, their families, and health-care teams. Lack of autonomy, overburden, family malfunctioning and coping, and health-care dehumanization are consequences of the conspiracy of silence in palliative care.
Conclusions: The present study had found that scales to measure this concept as well as interventions that consider important factors in the communication process in palliative care identified in this analysis are needed.
The hospital-to-home transition in palliative care is a vital process that requires continuity of care through the discharge process. However, little is known about the perceptions of patients with cancer and their family caregivers during this important palliative care transition in the Colombian health care context. The purpose of this study was to explore the experiences of the patient-family caregiver dyad in palliative care during the transition process between hospital and home in a health care institution in Bogota, Colombia. Using a grounded constructivist theory design, 30 patients with cancer receiving palliative care and 30 family caregivers participated in this study. The data were collected through 36 dyad interviews conducted in either the hospital or home of the participants. For the analysis, the constructivist analytical method was used. Findings revealed that “Looking for control at the end of life through the bond” was the main category of the study. This category could be further elaborated into 4 categories: (1) yearning for home; (2) recognizing burden; (3) experiencing uncertainty, a lack of control; and (4) achieving control. By understanding the patient and family caregiver perspective of care during the hospital-to-home transition, health care systems have the possibility to implement care programs in palliative care with an innovative educational component for health care professionals.