Pilot study with caregivers attending patients with neurologic diseases, about the meaning and knowledge of palliative care

  • Zoila Trujillo de los Santos Programa de Redes de Apoyo para Cuidados Paliativos de Pacientes Neurológicos (PRACUP)
  • Francisco Paz-Rodríguez Programa de Redes de Apoyo para Cuidados Paliativos de Pacientes Neurológicos (PRACUP)
  • María Alejandra Sánchez Guzmán Programa de Redes de Apoyo para Cuidados Paliativos de Pacientes Neurológicos (PRACUP)
  • Guadalupe Nava García Programa de Redes de Apoyo para Cuidados Paliativos de Pacientes Neurológicos (PRACUP)
  • Patricia Zamora R. Programa de Redes de Apoyo para Cuidados Paliativos de Pacientes Neurológicos (PRACUP)
  • Claudia García Pastrana Programa de Redes de Apoyo para Cuidados Paliativos de Pacientes Neurológicos (PRACUP)
  • Adriana Ochoa Morales Programa de Redes de Apoyo para Cuidados Paliativos de Pacientes Neurológicos (PRACUP)
  • María del Refugio Medina Durán Programa de Redes de Apoyo para Cuidados Paliativos de Pacientes Neurológicos (PRACUP)

Abstract

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
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How to Cite
Trujillo de los Santos, Z., Paz-Rodríguez, F., Sánchez Guzmán, M., Nava García, G., Zamora R., P., García Pastrana, C., Ochoa Morales, A., & Medina Durán, M. (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://actabioethica.uchile.cl/index.php/AB/article/view/37560/39221
Published
2015-11-06