Affiliations: [a] Charité – Universitätsmedizin Berlin, Corporate Member of Freie Universität Berlin, Humboldt-Universität zu Berlin, and Berlin Institute of Health, Germany | [b] Evangelische Hochschule Ludwigsburg, Germany | [c] Pflegewerk Berlin GmbH, Germany
Abstract: BACKGROUND:Amyotrophic lateral sclerosis (ALS) is a severe neurologic disease. Affected patients suffer from a gradual loss of functional capacities. The use of assistive technology and devices (ATD) can help them sustain their autonomy and ability of social participation. OBJECTIVE:The objective of this study was to analyze the experiences with ATD and to identify issues related to the use of ATD among ALS patients and their caregivers. METHODS:Semi-structured interviews were conducted with five ALS patients, five caregiving relatives, and five professional caregivers within a group discussion. Questions related to the living and support situation, expectations to and experiences with ATD, related problems and usage barriers. RESULTS:Three main areas that affected the experiences with ATD of ALS patients and their caregivers could be identified: usability of ATD, stigmatization due to ATD and the ATD supply process. Inadequate ATD and ATD supply negatively affected the patients’ quality of life and constituted a burden for caregivers. CONCLUSIONS:The presented study results give an important overview about the experiences of ALS patients and their caregivers with ATD. Strategies to approach identified issues could involve the implementation of a case management, patient empowerment, and an adaptation of ATD to meet user requirements.
