Universität zu Köln

Golla, Heidrun, Galushko, Maren, Pfaff, Holger ORCID: 0000-0001-9154-6575 and Voltz, Raymond (2014). Multiple sclerosis and palliative care - perceptions of severely affected multiple sclerosis patients and their health professionals: a qualitative study. BMC Palliat. Care, 13. LONDON: BMC. ISSN 1472-684X

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Abstract

Background: In Germany, patients severely affected by Multiple Sclerosis (MS) do not routinely come into contact with palliative care, even if possibly beneficial. This study was aimed at investigating how severely affected MS patients and their health professionals perceive palliative care to determine how to better approach these patients in Germany about this topic. Methods: 15 patients feeling severely affected by MS and 23 health professionals experienced with MS patients (3 social workers, 7 nurses, and 13 physicians) in both in-/outpatient and rural/urban settings participated in this qualitative study in Germany. Semi-structured interviews (patients, health professionals) and focus groups (health professionals) were conducted, transcribed verbatim and analyzed via qualitative content analysis. Results: MS patients were mostly unfamiliar with the term palliative care or were aware of it only in relation to cancer and dying. They did not view it as relevant to themselves. Health professionals predominantly associated palliative care with dying cancer patients, if familiar with it at all. Most physicians doubted its relevance for neurological patients and denied MS as a cause of death. Nevertheless, most felt they already offered their patients sufficient palliative care, or thought that it could not meet MS patients' complex needs. Most nurses and social workers recognized deficits in existing care structures and regarded palliative care as an opportunity for MS patients. Conclusion: MS patients', and health professionals' restricted, death-associated awareness of palliative care leads to discomfort, fear or rejection of this idea. Therefore, a defined concept of palliative care emphasizing opportunities for severely affected MS patients and considering early integration should be spread throughout the German MS community as an additional layer of support for this patient group.

Item Type:	Journal Article
Creators:	Creators Email ORCID ORCID Put Code Golla, Heidrun 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:38-443244
DOI:	10.1186/1472-684X-13-11
Journal or Publication Title:	BMC Palliat. Care
Volume:	13
Date:	2014
Publisher:	BMC
Place of Publication:	LONDON
ISSN:	1472-684X
Language:	English
Faculty:	Unspecified
Divisions:	Unspecified
Subjects:	no entry
Uncontrolled Keywords:	Keywords Language UNDERLYING CAUSE; DANISH PATIENTS; FOCUS GROUPS; PEOPLE; DEATH; DEFINITIONS; EXPERIENCES; SERVICE; CANCER; ISSUES Multiple languages Health Care Sciences & Services; Health Policy & Services Multiple languages
URI:	http://kups.ub.uni-koeln.de/id/eprint/44324