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Unmet needs of caregivers of severely affected multiple sclerosis patients: A qualitative study

Published online by Cambridge University Press:  17 June 2015

Heidrun Golla ,
Stephanie Mammeas ,
Maren Galushko ,
Holger Pfaff  and
Raymond Voltz
Heidrun Golla*
Affiliation:
Department of Palliative Medicine, University Hospital of Cologne, Cologne, Germany
Stephanie Mammeas
Affiliation:
Department of Palliative Medicine, University Hospital of Cologne, Cologne, Germany
Maren Galushko
Affiliation:
Department of Palliative Medicine, University Hospital of Cologne, Cologne, Germany
Holger Pfaff
Affiliation:
Institute for Medical Sociology, Health Services Research and Rehabilitation Science (IMHR), Faculty of Human Science and Faculty of Medicine, University of Cologne, Cologne, Germany
Raymond Voltz
Affiliation:
Department of Palliative Medicine, University Hospital of Cologne, Cologne, Germany Center for Integrated Oncology Cologne/Bonn, University Hospital of Cologne, Cologne, Germany Center for Clinical Trials, University Hospital of Cologne, Cologne, Germany
*
Address correspondence and reprint requests to: Heidrun Golla, Department of Palliative Medicine, the University Hospital of Cologne, Kerpener Strasse 62, 50924 Cologne, Germany. E-mail: [email protected].
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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.

Keywords

CaregiversSevere multiple sclerosisPalliative careQualitative study
Type
Original Articles
Information
Palliative & Supportive Care , Volume 13 , Issue 6 , December 2015 , pp. 1685 - 1693
Copyright
Copyright © Cambridge University Press 2015 

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