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Support needs of caregivers of patients with amyotrophic lateral sclerosis: A qualitative study

Published online by Cambridge University Press:  05 February 2018

Jessica de Wit Open the ORCID record for Jessica de Wit [Opens in a new window] ,
Carin D. Schröder ,
Julia el Mecky ,
Anita Beelen ,
Leonard H. van den Berg  and
Johanna M. A. Visser-Meily
Jessica de Wit
Affiliation:
Center of Excellence in Rehabilitation Medicine, Brain Center Rudolf Magnus, University Medical Center Utrecht, and De Hoogstraat Rehabilitation, Utrecht, The Netherlands
Carin D. Schröder*
Affiliation:
Center of Excellence in Rehabilitation Medicine, Brain Center Rudolf Magnus, University Medical Center Utrecht, and De Hoogstraat Rehabilitation, Utrecht, The Netherlands Department of Rehabilitation, Physical Therapy Science & Sports, Brain Center Rudolf Magnus, University Medical Center Utrecht, The Netherlands
Julia el Mecky
Affiliation:
Department of Clinical Genetics, University Medical Center Groningen, Groningen, The Netherlands Department of Clinical Ethics & Law, University of Southampton, Southampton, United Kingdom
Anita Beelen
Affiliation:
Department of Rehabilitation, Academic Medical Center, University of Amsterdam, Amsterdam, The Netherlands
Leonard H. van den Berg
Affiliation:
Department of Neurology, Brain Center Rudolf Magnus, University Medical Center Utrecht, Utrecht, The Netherlands
Johanna M. A. Visser-Meily
Affiliation:
Center of Excellence in Rehabilitation Medicine, Brain Center Rudolf Magnus, University Medical Center Utrecht, and De Hoogstraat Rehabilitation, Utrecht, The Netherlands Department of Rehabilitation, Physical Therapy Science & Sports, Brain Center Rudolf Magnus, University Medical Center Utrecht, The Netherlands
*
Author for correspondence: Carin Schröder, Department of Rehabilitation, Physical Therapy Science & Sports, University Medical Center Utrecht, Heidelberglaan 100, 3584 CX Utrecht, The Netherlands. Email: C.P.Schroder-4@umcutrecht.nl
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Abstract

Objective

The aim of this study was to explore the support needs of Dutch informal caregivers of patients with amyotrophic lateral sclerosis (ALS).

Method

Individual semi-structured interviews were conducted with 21 caregivers of ALS patients. Audio-taped interviews were transcribed and data were analyzed thematically.

Result

A total of four global support needs emerged: “more personal time”, “assistance in applying for resources”, “counseling”, and “peer contact”. Despite their needs, caregivers are reluctant to apply for and accept support. They saw their own needs as secondary to the needs of the patients.

Significance of results

ALS seems to lead to an intensive caregiving situation with multiple needs emerging in a short period. This study offers targets for the development of supportive interventions. A proactive approach seems essential, acknowledging the importance of the role of the caregivers in the care process at an early stage, informing them about the risk of burden, monitoring their wellbeing, and repeatedly offering support opportunities. Using e-health may help tailor interventions to the caregivers’ support needs.

Keywords

Amyotrophic lateral sclerosisinformal caregiversupport needsqualitative researchcaregiving
Type
Original Article
Information
Palliative & Supportive Care , Volume 17 , Issue 2 , April 2019 , pp. 195 - 201
Copyright
Copyright © Cambridge University Press 2018 

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