Universität zu Köln

Galushko, Maren, Golla, Heidrun, Strupp, Julia, Karbach, Ute, Kaiser, Claudia, Ernstmann, Nicole ORCID: 0000-0001-7685-6110, Pfaff, Holger ORCID: 0000-0001-9154-6575, Ostgathe, Christoph ORCID: 0000-0003-4449-5036 and Voltz, Raymond (2014). Unmet Needs of Patients Feeling Severely Affected by Multiple Sclerosis in Germany: A Qualitative Study. J. Palliat. Med., 17 (3). S. 274 - 282. NEW ROCHELLE: MARY ANN LIEBERT, INC. ISSN 1557-7740

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Abstract

Background: The needs of patients feeling severely affected by multiple sclerosis (MS) have rarely been investigated. However this is essential information to know before care can be improved, including adding palliative care (PC) services where helpful. Since it remains unclear at what point specialized palliative care should begin for this patient group, this study focuses on needs in general. Objective: The objective was to explore the subjectively unmet needs of patients feeling severely affected by MS. Methods: The study used a qualitative cross-sectional approach for needs assessment. Fifteen patients self-reporting feeling severely affected by MS were recruited and interviewed using a combination of purposive and convenience sampling (five were accompanied by a caregiver relative). Interviews were recorded and transcribed verbatim, followed by qualitative content analysis. Results: Unmet needs were identified in the main categories support of family and friends,'' health care services,'' managing everyday life,'' and maintaining biographical continuity.'' Patients expressed the desire for more support from their families and to be viewed as distinct individuals. They see a substantial deficit in the physician-patient relationship and in the coordination of services. A decrease in expressed unmet needs was found for patients more severely affected and less socially integrated. Conclusions: To address the unmet needs of severely affected MS patients, health care services need to be improved and linked with existing PC services. Special attention is required to form supporting professional-patient relationships. Multiprofessional services should be accessible for patients, while integrating relatives. All services should have an individual approach to provide needs-tailored support.

Item Type:	Journal Article
Creators:	Creators Email ORCID ORCID Put Code Galushko, Maren UNSPECIFIED UNSPECIFIED UNSPECIFIED Golla, Heidrun UNSPECIFIED UNSPECIFIED UNSPECIFIED Strupp, Julia UNSPECIFIED UNSPECIFIED UNSPECIFIED Karbach, Ute UNSPECIFIED UNSPECIFIED UNSPECIFIED Kaiser, Claudia UNSPECIFIED UNSPECIFIED UNSPECIFIED Ernstmann, Nicole UNSPECIFIED orcid.org/0000-0001-7685-6110 UNSPECIFIED Pfaff, Holger UNSPECIFIED orcid.org/0000-0001-9154-6575 UNSPECIFIED Ostgathe, Christoph UNSPECIFIED orcid.org/0000-0003-4449-5036 UNSPECIFIED Voltz, Raymond UNSPECIFIED UNSPECIFIED UNSPECIFIED
URN:	urn:nbn:de:hbz:38-443721
DOI:	10.1089/jpm.2013.0497
Journal or Publication Title:	J. Palliat. Med.
Volume:	17
Number:	3
Page Range:	S. 274 - 282
Date:	2014
Publisher:	MARY ANN LIEBERT, INC
Place of Publication:	NEW ROCHELLE
ISSN:	1557-7740
Language:	English
Faculty:	Unspecified
Divisions:	Unspecified
Subjects:	no entry
Uncontrolled Keywords:	Keywords Language PALLIATIVE CARE; OF-LIFE; PEOPLE; EXPERIENCES Multiple languages Health Care Sciences & Services Multiple languages
URI:	http://kups.ub.uni-koeln.de/id/eprint/44372