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Article type: Research Article
Authors: Eicher, Corneliaa; * | Kiselev, Jörna | Brukamp, Kirstenb | Kiemel, Dianab | Spittel, Susannea | Maier, Andréa | Meyer, Thomasa | Oleimeulen, Ursulac | Greuèl, Mariusc
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
Correspondence: [*] Corresponding author: Cornelia Eicher, Charité Universitätsmedizin Berlin, Geriatrics Research Group, Reinickendorfer Straße 61, 13347 Berlin, Germany. Tel.: +49 30 450 553 345; E-mail: cornelia.eicher@charite.de.
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.
Keywords: Amyotrophic lateral sclerosis (ALS), assistive technology and devices (ATD), usability, stigmatization, patient supply, caregiver stress
DOI: 10.3233/TAD-190227
Journal: Technology and Disability, vol. 31, no. 4, pp. 203-215, 2019
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