An Online Tool to Inform and Educate Caregivers on Amyotrophic Lateral Sclerosis (ALS)

Abstract

Amyotrophic Lateral Sclerosis (ALS) is the most common Motor Neuron Disease. This paper presents the design, development, and evaluation of an online tool that provides information and training materials to caregivers about ALS, to promote health care and quality of life of patients. To collect the appropriate content, a literature review was conducted, and a Content Management System (CMS) was used for the development of the tool. For its evaluation, reliability, acceptance, effectiveness and usefulness were examined through semi-structured interviews. The online tool was positively evaluated by the caregivers, who participated in the evaluation process.

Keywords: Amyotrophic Lateral Sclerosis; Palliative Care; caregivers; education; online systems.