Eficàcia d'una pàgina web per a cuidadors i cuidadores de persones amb esclerosi lateral amiotròfica: projecte de recerca

Abstract

BAKGROUND: The Amyotrophic Lateral Sclerosis (ALS) is a minority neurodegenerative disease. The majority of the cares are carried out by the family caregiver at their houses. Since it is a rapidly progressing illness and it generates a great growing dependence, informal caregivers bear a great deal of burden. This fact can affect the physical and psychological health of caregivers, generating the caregiver burden syndrome or the family renunciation. This project aims to develop and evaluate a website designed to provide information and tools to the main caregivers, in order to empower them into the task of caring. In addition, what it is proposed is an integrative and multidisciplinary tool, where caregivers will be able to communicate with professionals in an easy way. OBJECTIVE: The main objective of the project is to evaluate the effectiveness of the web page developed which its name is “consetELAcions” aimed at the informal caregivers of people with ALS. DESIGN AND METHEDOLOGY: A quasi-experimental design is proposed as a community intervention essay. A mixed quantitative and qualitative methodology will be used. The study population will be the caregivers of people with ALS of the Sanitary Region of Girona that comply the inclusion and exclusion criteria. Through the Zarit questionnaire, the Beck Inventory and SF-12, variables such as caregiver burden, depression, quality of life and satisfaction with the instrument will be studied before, during and after the intervention