INTRODUCTION: Assistive technologies (ATs) offer significant potential to improve the quality of life for individuals with Amyotrophic Lateral Sclerosis (ALS). This study explores the concept of integrated user value (IUV), focusing on five key aspects: quality, user experience, cost-effectiveness, safety, and accessibility. Understanding IUV is crucial for enhancing the development and deployment of ATs in ALS disease management. METHODS: A systematic search approach was utilized to collect data from Facebook ALS support groups, comprising posts from individuals with ALS and their caregivers. Using a predefined set of keywords, 416 posts were analyzed. The posts were categorized based on the five aspects of IUV, and an in-depth content analysis was conducted to explore patterns, challenges, and experiences associated with AT usage. RESULTS: The analysis revealed significant challenges across all aspects of IUV. Quality and user experience were interlinked, with users frequently citing inadequate designs and unmet customization needs. Cost-effectiveness was a key concern, with high costs and limited insurance coverage contributing to financial strain. Accessibility issues, including delays in acquiring devices and insufficient public facilities, further highlighted systemic challenges. Safety concerns emphasized the need for personalized and intuitive AT designs. DISCUSSION: The findings underscore the importance of a holistic approach to AT development, integrating all five aspects of IUV. Recommendations include enhancing product quality, ensuring affordability, prioritizing user-centered design, and addressing accessibility gaps. Collaboration between AT designers, healthcare providers, and policymakers is essential to optimize AT value and improve the quality of life for individuals with ALS and their caregivers.

• Keywords
• ALS, assistive technology, disease management, integrated user value, online community, support groups,
• Publication type
• Journal Article MeSH

Background and study goal: Social media are a societal phenomenon today, including the oldest generation, yet they are seldom used in current health research to identify the needs of persons with Alzheimer's disease (PADs) and their carers. There is an even bigger research gap in the analysis of caregivers' communication in online support groups and its classification according to activities of daily living (ADLs). For this, the goal of this study is to identify real-life practices of informal caregivers who care for PADs based on the analysis of their communication in Facebook groups. Methods: A sample of 1603 contributions was obtained from support groups by keyword search, manual coding, and verification; thus, the contributions in the sample are relevant for the individual basic ADLs of PADs. Next, five main conversation topics were identified for each ADL. This was done using the topic extractor based on simple parallel threaded implementation of LDA with a sparse sampling scheme and data structure. Results: The qualitative dimension of research identified discussion topics as well as specific caregiver behavior patterns for each ADL. The quantitative dimension determining the level of engagement of group members in individual ADLs was also measured. The highest engagement was found in activities of feeding and drinking, followed by bathing. In contrast, the activities of dressing, continence, and toileting attract the lowest interest. Moreover, the causal links between the topics discussed within the areas of ADLs were identified. Conclusions: The acquired knowledge can help further research focus on the most problematic areas relevant for people with AD in order to increase their quality of life and at the same time reduce the caregiver burden. The study expands the information of the demands posed by the individual caregiver activities, specifically in the context of activity-based costing or time-based activity costing.

• Keywords
• Alzheimer’s disease, Facebook, activities of daily living, caregiver burden, informal caregiving,
• MeSH
• Alzheimer Disease * MeSH
• Activities of Daily Living MeSH
• Quality of Life MeSH
• Humans MeSH
• Caregivers MeSH
• Social Media * MeSH
• Self-Help Groups MeSH
• Check Tag
• Humans MeSH
• Publication type
• Journal Article MeSH
• Research Support, Non-U.S. Gov't MeSH