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Caregivers of people with disorders of consciousness: which burden predictors?

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Abstract

Objectives

Caregivers of patients diagnosed with disorders of consciousness (DoCs) play a pivotal role in the care pathway of these patients. Due to the high costs of care, among other symptoms and disorders previously described in the literature, they can manifest also mood and stress-related disorders which greatly impact their life and increase their burden. It is noteworthy to identify which factors are better related to the manifestation of mood and stress-related disorders to care for the caregivers in time. However, no studies have explored which factors are related to the manifestation of these disorders within this population yet.

Materials and methods

We explored with different questionnaires whether patient-, caregiver-, and caregiving environment-related factors are associated with mood and stress-related disorders on 114 caregivers of patients with DoCs.

Results

Our results showed that female caregivers manifested higher levels of both depression and prolonged grief disorder; furthermore, the presence of economic problems increased the levels of depression. Moreover, different levels of caregivers’ depression, anxiety, anger expression, and prolonged grief disorder were closely linked to the degree of behavioural responsiveness of the patients.

Conclusions

Our results highlighted the need to consider also caregivers’ mood and stress-related disorders when defining the care pathway of patients with DoCs; indeed, caregivers constitute the main environment of DoC patients and they need tailored interventions aimed at reducing their burden due to caregiving.

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Notes

  1. The subcategories MCS+ and MCS- better define the complexity of MCS patients’ behaviours. Patients in MCS+ show high-level behavioural responses, such as command following and verbalization or non-functional communication, whilst patients in MCS− show low-level behavioural responses, such as stimuli localization and visual pursuit [39].

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Acknowledgements

The authors thank all of the patients and caregivers involved in this study.

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Authors and Affiliations

  1. UOC Neurology, Public Health, Disability, Fondazione IRCCS Istituto Neurologico Carlo Besta, Via Celoria 11, Milan, Italy

    Francesca G. Magnani, Matilde Leonardi & Davide Sattin

Authors
  1. Francesca G. Magnani
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  2. Matilde Leonardi
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  3. Davide Sattin
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Correspondence to Francesca G. Magnani.

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The author declare no conflict of interest.

Ethical approval

The study was approved by the local ethical committee and each participant signed the informed consent prior to the participation in the study, both as caregivers as well as a proxy for the patients.

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Magnani, F.G., Leonardi, M. & Sattin, D. Caregivers of people with disorders of consciousness: which burden predictors?. Neurol Sci 41, 2773–2779 (2020). https://doi.org/10.1007/s10072-020-04394-6

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