Burden and needs of 487 caregivers of patients in vegetative state and in minimally conscious state: results from a national study.

OBJECTIVE: The aim of this study is to evaluate the burden of caregivers of patients with disorders of consciousness (DOCs), considering psychosocial difficulties, health condition and financial aspects.
DESIGN: This is an observational multi-centre study. Four hundred and eighty-seven participants were assessed using the Caregiver Needs Assessment, Family Strain Questionnaire, Short Form 12, Spielberger State Trait Anxiety Inventory-Y, Beck Depression Inventory, Prolonged Grief Disorder Questionnaire and Coping Orientations to Problem Experiences. OUTCOMES AND
RESULTS: The sample had lower scores both in Physical (M = 49.85, SD = 7.66) and Mental (M = 39.37, SD = 12.90) health and a higher level of anxiety (p < 0.001) in comparison to the Italian normative sample. More than half of the sample manifested a high level of depressive symptoms (59.5%) and 27.6% satisfied criteria for Prolonged Grief Disorder. This sample reported needs to know the disease of their beloved, high needs for information and communication, several problems in social involvement and in emotional burden. The most frequently adopted coping strategies are acceptance, turning to religion, positive reinterpretation and planning. Finally, 40.2% of caregivers report to earn a net income of less than 17 000 euros per year.
CONCLUSIONS: These results showed a high burden related to providing care to patients with DOCs. This study sets the scene to plan comprehensive support strategies for caregivers in order to diminish level of burden.