Caregivers of people with disorders of consciousness: which burden predictors?
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ORIGINAL ARTICLE
Caregivers of people with disorders of consciousness: which burden predictors? Francesca G. Magnani 1 & Matilde Leonardi 1 & Davide Sattin 1 Received: 10 February 2020 / Accepted: 3 April 2020 # Fondazione Società Italiana di Neurologia 2020
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 environmentrelated 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. Keywords Caregiver . Vegetative state . Minimally conscious state . Mood disorders . Disorders of consciousness
Introduction The care of patients with acquired brain injuries represents a great burden for informal caregivers as they are increasingly required to manage their relatives. The caregivers’ burnout and emotional distress are mainly analysed in the case of neurodegenerative diseases, such as Alzheimer’s disease, frontotemporal, and other forms of dementia [1]. However, patients suffering from disorders of consciousness (DoCs) represent an important clinical population that can be related to huge Electronic supplementary material The online version of this article (https://doi.org/10.1007/s10072-020-04394-6) contains supplementary material, which is available to authorized users. * Francesca G. Magnani [email protected] 1
UOC Neurology, Public Health, Disability, Fondazione IRCCS Istituto Neurologico Carlo Besta, Via Celoria 11, Milan, Italy
social, economic, and emotional consequences for their caregivers as well (see Soeterik et al. [2] for a systematic review). Individuals diagnosed with DoCs represent a heterogeneous category, ranging from vegetative state
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