Universität zu Köln

Golla, Heidrun, Mammeas, Stephanie, Galushko, Maren, Pfaff, Holger ORCID: 0000-0001-9154-6575 and Voltz, Raymond (2015). Unmet needs of caregivers of severely affected multiple sclerosis patients: A qualitative study. Palliat. Support Care, 13 (6). S. 1685 - 1694. NEW YORK: CAMBRIDGE UNIV PRESS. ISSN 1478-9523

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Abstract

Objective: Multiple sclerosis (MS) patients' caregivers are sometimes considered as hidden patients. How much more this might be true for caregivers of severely affected MS patients has so far been scarcely studied. Palliative care also addressing relatives' needs might therefore be very relevant for these caregivers. However, we do not yet know which unmet needs they have and how these could be met. Our aim was to gain an insight into the subjectively unmet needs of caregivers of severely affected MS patients in Germany. Method: The study employed a qualitative cross-sectional approach for assessing unmet needs. Twelve caregivers of severely affected MS patients were recruited using a convenience sampling approach. Face-to-face interviews were conducted, audiotaped, and transcribed verbatim, followed by qualitative content analysis. Results: Unmet needs were sorted into the following categories: relationship to physician, individual support by the healthcare system, relationship to the individual severely affected by MS, end-of-life issues, self-care, and higher awareness of MS. Caregivers tended to group the unmet needs of their care recipients with their own and rarely focused on their own wishes and restrictions. Significance of Results: A close patient-caregiver dyad makes it difficult to differentiate unmet caregiver needs. However, the palliative care approach might help caregivers of severely affected MS patients by answering questions on disease progress and end-of-life issues, as well as by offering respite care, support for self-care, and help in preserving one's identity, and also anticipating the time to come after the death.

Item Type:	Journal Article
Creators:	Creators Email ORCID ORCID Put Code Golla, Heidrun UNSPECIFIED UNSPECIFIED UNSPECIFIED Mammeas, Stephanie UNSPECIFIED UNSPECIFIED UNSPECIFIED Galushko, Maren UNSPECIFIED UNSPECIFIED UNSPECIFIED Pfaff, Holger UNSPECIFIED orcid.org/0000-0001-9154-6575 UNSPECIFIED Voltz, Raymond UNSPECIFIED UNSPECIFIED UNSPECIFIED
URN:	urn:nbn:de:hbz:38-385479
DOI:	10.1017/S1478951515000607
Journal or Publication Title:	Palliat. Support Care
Volume:	13
Number:	6
Page Range:	S. 1685 - 1694
Date:	2015
Publisher:	CAMBRIDGE UNIV PRESS
Place of Publication:	NEW YORK
ISSN:	1478-9523
Language:	English
Faculty:	Unspecified
Divisions:	Unspecified
Subjects:	no entry
Uncontrolled Keywords:	Keywords Language PALLIATIVE CARE NEEDS; OF-LIFE; HEALTH-PROFESSIONALS; PEOPLE; EXPERIENCES; BURDEN; IMPACT; CONSEQUENCES; INDIVIDUALS; PARTNERS Multiple languages Health Policy & Services Multiple languages
URI:	http://kups.ub.uni-koeln.de/id/eprint/38547