Evaluación de la sobrecarga en cuidadores de pacientes con enfermedades huérfanas - raras crónicamente debilitantes
Forero Alemán, Adriana Vanesa | 2019
The “ orphan diseases “ are any chronic debilitating diseases that affects a small portion of the population, harming 1 out of 5000 inhabitants. The apperance of these pathologies, generates an important impact on the person in charge of the patient, since this disease is characterised by having a slow and lasting progression, such as limitation and loss of Independence, generating a high grade of dependence. That is why it is essential to support, supervise and help the caregiver, facilitating the achievement of daily activities, these tasks are often done by informal caregivers such as family members.
The realisation that basic tasks requiring support and continued care, in most cases the need of permanent care, often requires the caregiver’s full time availability.putting the patients needs before their own and foregoing their own daily activities and obligations, causing overload and affecting the quality of life of the caregiver.Purpose: Acknowledge the level of overload on caregivers in charge of patients with orphans diseases that are part of the ‘Colombian Association of patients with Lysosomal storage diseases’ and the ‘ Biotechnology and Genetic Laboratory’ that reside in Bogota city. Methodology: Consists of a Cross- sectional. Descriptive Observational Study, with a sample size of 55 people. Results: The results of the ‘APGAR’ survey ang ‘Barthel scale/ index’ in relation with the overload of work on caregivers, is ineffective in that is does not accurately forecast workload on caregiversand does not take into account time dedicated to the care of the patient. Conclusions: It is important to understand the level ofwork overload on caregivers in particular the correlation with the scales used to Access leve lof care, patients dependency and the results of a patients survey which can severely effect family funtionality