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Relatives of patients with amyotrophic lateral sclerosis: Their experience of care and support

Published online by Cambridge University Press:  16 March 2015

Birgitta Jakobsson Larsson ,
Camilla Fröjd ,
Karin Nordin  and
Ingela Nygren
Birgitta Jakobsson Larsson*
Affiliation:
Department of Neuroscience, Neurology, Uppsala University, Uppsala, Sweden
Camilla Fröjd
Affiliation:
Department of Surgical science, Uppsala University, Uppsala, Sweden
Karin Nordin
Affiliation:
Department of Public Health and Caring Science, Uppsala University, Uppsala, Sweden Department of Global Health and Primary Care, University of Bergen, Bergen, Norway
Ingela Nygren
Affiliation:
Department of Neuroscience, Neurology, Uppsala University, Uppsala, Sweden
*
Address correspondence and reprint requests to: Birgitta Jakobsson Larsson, Department of Neuroscience and Neurology, Uppsala University, S 751 85 Uppsala, Sweden. E-Mail: [email protected]
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Abstract

Objective:

The purpose of this study was to describe relatives' experience of patient care and the support they themselves received during the course of disease progression.

Method:

A total of 15 relatives were included from two neurology clinics in Sweden: 7 wives, 4 husbands, and 4 daughters. Data were collected through qualitative interviews 6 to 12 months after the patient had died. Content analysis was performed to analyze the interviews.

Result:

The results showed that patient care was experienced as positive and as being based on the patient's needs and desires. Treatment from the staff, support and help, knowledge, availability, and continuity among the team were important reasons for the relations to feel secure. In addition, support for relatives was available, but different factors influenced its use. Most relatives did not think about their own needs but focused on the patient.

Significance of Results:

It is important that care and support for both patients and relatives be based on individual needs. The staff members responsible for providing this care and support must have knowledge and experience of the disease and its specific care. If they do not belong to an ALS (amyotrophic lateral sclerosis) team, they may require further education and support. The relatives focus on the patient's situation and do not think of their own needs. It is therefore important that health professionals be observant of the relatives and offer them help and support to better manage their situation.

Keywords

Amyotrophic lateral sclerosisPalliative careCareSupportRelatives
Type
Original Articles
Information
Palliative & Supportive Care , Volume 13 , Issue 6 , December 2015 , pp. 1569 - 1577
Copyright
Copyright © Cambridge University Press 2015 

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