Please use this identifier to cite or link to this item: http://doi.org/10.25358/openscience-10093
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dc.contributor.authorGerlach, Christina-
dc.contributor.authorBaus, Miriam-
dc.contributor.authorGianicolo, Emilio-
dc.contributor.authorBayer, Oliver-
dc.contributor.authorFaksvåg Haugen, Dagny-
dc.contributor.authorWeber, Martin-
dc.contributor.authorMayland, Catriona R.-
dc.date.accessioned2024-02-15T10:27:28Z-
dc.date.available2024-02-15T10:27:28Z-
dc.date.issued2023-
dc.identifier.urihttps://openscience.ub.uni-mainz.de/handle/20.500.12030/10111-
dc.description.abstractPurpose: We conducted an international survey of bereaved relatives of cancer patients dying in hospitals in seven countries, with the aim to assess and improve the quality of care. The survey used the i-CODE (International Care of the Dying Evaluation) questionnaire. Here, we report findings from the free-text comments submitted with the questionnaires. We explored for topic areas which would potentially be important for improving the quality of care. Further, we examined who reported free-texts and in what way, to reduce bias without ignoring the function the free-texts may have for those contributing. Methods: We used a combined qualitative-quantitative approach: logistic regression analysis to study the effect of respondents’ socio-demographic characteristics on the probability of free-texts contributions and thematic analysis to understand the free-text meaning. The primary survey outcomes, (1) how frequently the dying person was treated with dignity and respect and (2) support for the relative, were related to free-text content. Results: In total, 914 questionnaires were submitted; 457/914 (50%) contained free-text comments. We found no socio-demographic differences between the respondents providing free-texts and those who did not. We discovered different types of free-texts (“feedback,” “narrative,” “self-revelation”) containing themes of which “continuity of care,” “the one person who can make a difference,” and “the importance of being a companion to the dying” represent care dimensions supplementing the questionnaire items. A free-text type of grateful feedback was associated with well perceived support for the relative. Conclusion: Bereaved relatives used the free-texts to report details related to i-CODE items and to dimensions otherwise not represented. They highlighted the importance of the perceived support from human interaction between staff and the dying patient and themselves; and that more than professional competence alone, personal, meaningful interactions have profound importance.en_GB
dc.language.isoengde
dc.rightsCC BY*
dc.rights.urihttps://creativecommons.org/licenses/by/4.0/*
dc.subject.ddc610 Medizinde_DE
dc.subject.ddc610 Medical sciencesen_GB
dc.titleWhat do bereaved relatives of cancer patients dying in hospital want to tell us? Analysis of free-text comments from the International Care of the Dying Evaluation (i-CODE) survey : a mixed methods approachen_GB
dc.typeZeitschriftenaufsatzde
dc.identifier.doihttp://doi.org/10.25358/openscience-10093-
jgu.type.contenttypeScientific articlede
jgu.type.dinitypearticleen_GB
jgu.type.versionPublished versionde
jgu.type.resourceTextde
jgu.organisation.departmentFB 04 Medizinde
jgu.organisation.number2700-
jgu.organisation.nameJohannes Gutenberg-Universität Mainz-
jgu.rights.accessrightsopenAccess-
jgu.journal.titleSupportive care in cancerde
jgu.journal.volume31de
jgu.pages.alternative81de
jgu.publisher.year2023-
jgu.publisher.nameSpringer Naturede
jgu.publisher.placeBerlin; Heidelberg; New Yorkde
jgu.publisher.issn1433-7339de
jgu.organisation.placeMainz-
jgu.subject.ddccode610de
jgu.publisher.doi10.1007/s00520-022-07490-9de
jgu.organisation.rorhttps://ror.org/023b0x485-
jgu.subject.dfgLebenswissenschaftende
Appears in collections:DFG-491381577-H

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