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