Aim. To describe the meaning attributed to palliative care (PC) by caregivers, as well as their preference with respect to informing the patient and their satisfaction in their caring role. Methodology: Study descriptive transversal, sample intended of 40 caregivers of neurologic patients needing PC. A questionnaire about knowledge of the topic and their burnout status was applied. A descriptive-comparative analysis was carried out with 95% (p<0.05) confidence interval. Results: Patients: 52.6% men, average age 57.9 years, duration of disease: 5 years, average of 2 children. Caregivers: 77.5% women, 25.0% married, average age: 49.3 years, daily caring 18.5 hours, 62.5% with high School or university studies, 40% alone as caregivers, 16.7% do not count with support nets and 42.5% present high burn out status. Of them 70% did not have previous information about PC. Meaning: 50% mentioned “to give help” (physical or emotional), 20% “to enhance quality of life”. 87.5% would like to be informed with detail if they were the patients, 86.1% would like to be informed by the physician and 62.5% were in favor to inform with detail to their family member. Conclusions: It is important to disseminate PC to caregivers and to stimulate the right of patients to receive information about the prognosis of their disease.
Keywords:
palliative care, palliative medicine, perception, burnout
Trujillo de los Santos, Z., Paz-Rodríguez, F., Sánchez Guzmán, M. A., Nava García, G., Zamora R., P., García Pastrana, C., Ochoa Morales, A., & Medina Durán, M. del R. (2015). Pilot study with caregivers attending patients with neurologic diseases, about the meaning and knowledge of palliative care. Acta Bioethica, 21(2). Retrieved from https://revistas.uchile.cl/index.php/AB/article/view/37560
