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Taking Care of Patients with Disorders of Consciousness: Caregivers’ Burden and Quality of Life

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Coma and Disorders of Consciousness

Abstract

The aim of this contribution is to present the main results of several studies that analyzed the burden of caregivers of patients with disorder of consciousness (DOC) and its impact on caregivers’ life. First of all, a distinction between the term “formal” and “informal” caregivers is made, and a presentation of “burden” concept is introduced. Analyzing recent literature available on caregiving and burden of informal caregivers of patients with DOC, the authors found a difficulty in identifying a simple and univocal definition of burden concept. The chapter will then describe the main effects of burden on the life of caregivers of DOC patients, considering a multifaceted burden concept. In particular, the authors will report results on an objective dimension of burden (which include pragmatic changes on personal life, such as economic condition, work activities, hobbies, and daily activities) and a subjective dimension. The latter will be described distinguishing between interpersonal level (self-perception in relation to the environment, roles definition, interpersonal relations with the patients, and others) and intrapersonal level (anxiety and depression symptoms, general mental health, prolonged grief disorder, and personal strategies to face a stressful situation). Perspectives of possible future studies and interventions on caregivers’ burden will be finally discussed.

This thing has totally changed my life. Now I am talking about it, I can talk about it but unfortunately…, I have not resigned myself to it. I shouldn’t say it, but I live in another reality. I’m determined to do like this: when I am with my husband it’s a life, but when I leave the long-term care unit, it’s another life. I have my grandchildren, I have my children, I have relatives, so I’m never alone. I don’t know if it’s right or wrong…. (A patient’s wife)

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Author information

Authors and Affiliations

  1. SOSD Neurology, Public Health, Disability—Scientifics Directorate, Neurological Institute IRCCS C.Besta Foundation, Via Celoria 11, Milan, Italy

    Matilde Leonardi & Davide Sattin

  2. Department of Psychology, e-Campus University, Milan, Italy

    Venusia Covelli

Authors
  1. Matilde Leonardi
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  2. Davide Sattin
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  3. Venusia Covelli
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Corresponding author

Correspondence to Davide Sattin .

Editor information

Editors and Affiliations

  1. Department of Research, Casa Colina Hospital and Centers for Healthcare, Pomona, California, USA

    Caroline Schnakers

  2. GIGA Consciousness, Coma Science Group & Neurology Department, Liège, Belgium

    Steven Laureys

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Leonardi, M., Sattin, D., Covelli, V. (2018). Taking Care of Patients with Disorders of Consciousness: Caregivers’ Burden and Quality of Life. In: Schnakers, C., Laureys, S. (eds) Coma and Disorders of Consciousness. Springer, Cham. https://doi.org/10.1007/978-3-319-55964-3_6

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  • DOI: https://doi.org/10.1007/978-3-319-55964-3_6

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