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.

Prediction of caregiver psychological distress in amyotrophic lateral sclerosis: A cross-sectional study.

“…The caregiver burden syndrome is characterized by the stress experienced by the carers due to the challenges and difficulties involved in caring for another dependent person, which will ultimately impact the well-being of the caregivers (Foley et al, 2016;Giannaki et al, 2021;Siciliano et al, 2017), in addition to having associated economic, social or personal repercussions (Tramonti et al, 2019). Due to the characteristics of ALS, both the quality of life and the mood of caregivers are significantly lower, as they have a significant involvement in the functional care of patients (Maksymowicz-Śliwin ́ska et al, 2023).…”