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@ARTICLE{Linse:140112,
author = {Linse, Katharina and Aust, Elisa and Joos, Markus and
Hermann, Andreas},
title = {{C}ommunication {M}atters-{P}itfalls and {P}romise of
{H}ightech {C}ommunication {D}evices in {P}alliative {C}are
of {S}everely {P}hysically {D}isabled {P}atients {W}ith
{A}myotrophic {L}ateral {S}clerosis.},
journal = {Frontiers in neurology},
volume = {9},
issn = {1664-2295},
address = {Lausanne},
publisher = {Frontiers Research Foundation},
reportid = {DZNE-2020-06434},
pages = {603},
year = {2018},
abstract = {Amyotrophic lateral sclerosis (ALS) is the most common
motor neuron disease, leading to progressive paralysis,
dysarthria, dysphagia, and respiratory disabilities. Therapy
is mostly focused on palliative interventions. During the
course of the disease, verbal as well as nonverbal
communicative abilities become more and more impaired. In
this light, communication has been argued to be 'the essence
of human life' and crucial for patients' quality of life.
High-tech augmentative and alternative communication
(HT-AAC) technologies such as eyetracking based computer
devices and brain-computer-interfaces provide the
possibility to maintain caregiver-independent communication
and environmental control even in the advanced disease state
of ALS. Thus, they enable patients to preserve social
participation and to independently communicate
end-of-life-decisions. In accordance with these functions of
HT-AAC, their use is reported to strengthen
self-determination, increase patients' quality of life and
reduce caregiver burden. Therefore, HT-AAC should be
considered as standard of (palliative) care for people with
ALS. On the other hand, the supply with individually
tailored HT-AAC technologies is limited by external and
patient-inherent variables. This review aims to provide an
overview of the possibilities and limitations of HT-AAC
technologies and discuss their role in the palliative care
for patients with ALS.},
subtyp = {Review Article},
cin = {AG Hermann / AG Teipel},
ddc = {610},
cid = {I:(DE-2719)1511100 / I:(DE-2719)1510100},
pnm = {344 - Clinical and Health Care Research (POF3-344)},
pid = {G:(DE-HGF)POF3-344},
typ = {PUB:(DE-HGF)16},
pubmed = {pmid:30100896},
pmc = {pmc:PMC6072854},
doi = {10.3389/fneur.2018.00603},
url = {https://pub.dzne.de/record/140112},
}