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AuthorBöckler, Stefaniedc.contributor.author
Date of accession2018-02-06T15:46:12Zdc.date.accessioned
Available in OPARU since2018-02-06T15:46:12Zdc.date.available
Year of creation2016dc.date.created
Date of first publication2018-02-06dc.date.issued
AbstractThe subject of this thesis is the psychosocial adaptation of Swedish patients with amyotrophic lateral sclerosis (ALS) to their disease as well as their decisions regarding life-prolonging and -shortening measures in an intercultural comparison with German ALS patients. For this purpose, data of N=40 Swedish ALS patients were collected using standardised neuropsychological questionnaires and a semi-structured interview. Data were compared with N=100 German ALS patients. It was shown that the psychosocial adaptation was not associated with physical state of functioning, but it was positively related to the duration of the illness. In an intercultural comparison, the Swedish ALS patients showed a significantly higher quality of life and lower depression rate than the German ALS patients. Although this study confirmed a link between the desire for accelerated death and low psychosocial adaptation, there was no difference between the Swedish and German ALS patients in their desire to hastened death. Non-invasive ventilation was found to be unrelated to psychosocial adaptation, while a positive correlation between percutaneous endoscopic gastrostomy (PEG) nutrition and quality of life was demonstrated. There was no difference between the two groups in their choice for life-prolonging measures, but a high number of ALS patients had not yet decided on life-prolonging measures. Especially for measures that are considered invasive, a decision was postponed. Finally, it was shown that the social network of ALS patients is an important factor in the decision-making process and in the management of the disease. The results of this thesis lead to the conclusion that psychosocial adaptation is possible in a severe and fatal disorder such as ALS. There seem to be cultural differences between German und Swedish ALS patients regarding psychosocial adaptation and their therapeutic decisions, partly explained by differences in social support. Concluding, there is a need to focus more on the social network of patients in research and practice as well as to look for ways to improve and support it.dc.description.abstract
Languagededc.language.iso
PublisherUniversität Ulmdc.publisher
LicenseStandard (ohne Print-on-Demand)dc.rights
Link to license texthttps://oparu.uni-ulm.de/xmlui/license_opod_v1dc.rights.uri
KeywordALSdc.subject
KeywordEnd-of-Life Decision Makingdc.subject
KeywordCopingdc.subject
KeywordNIVdc.subject
KeywordPEGdc.subject
Dewey Decimal GroupDDC 610 / Medicine & healthdc.subject.ddc
MeSHAmyotrophic lateral sclerosisdc.subject.mesh
MeSHDepressive disorderdc.subject.mesh
MeSHPatients; Psychologydc.subject.mesh
MeSHTerminally ill; Psychologydc.subject.mesh
MeSHEthics, medicaldc.subject.mesh
MeSHQuality of lifedc.subject.mesh
TitleEnd-of-Life Entscheidungen von Patienten mit Amyotropher Lateralsklerose: Ein interkultureller Vergleich zwischen Schweden und Deutschlanddc.title
Resource typeDissertationdc.type
Date of acceptance2017-12-15dcterms.dateAccepted
RefereeLulé, Dorothéedc.contributor.referee
RefereeAndersen, Peterdc.contributor.referee
DOIhttp://dx.doi.org/10.18725/OPARU-5427dc.identifier.doi
PPN1013674456dc.identifier.ppn
URNhttp://nbn-resolving.de/urn:nbn:de:bsz:289-oparu-5484-8dc.identifier.urn
GNDMyatrophische Lateralsklerosedc.subject.gnd
GNDLebensqualitätdc.subject.gnd
GNDDepressiondc.subject.gnd
GNDSterbehilfedc.subject.gnd
FacultyMedizinische Fakultätuulm.affiliationGeneral
InstitutionUKU. Klinik für Neurologieuulm.affiliationSpecific
Grantor of degreeMedizinische Fakultätuulm.thesisGrantor
DCMI TypeTextuulm.typeDCMI
CategoryPublikationenuulm.category
In cooperation withUmeå Universitetuulm.cooperation
Bibliographyuulmuulm.bibliographie


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