Burden of caregivers of patients in Vegetative State and Minimally Conscious State

• Published in: Acta neurologica Scandinavica Vol. 127; no. 1; pp. 10 - 18
• Main Authors: Giovannetti, A. M., Leonardi, M., Pagani, M., Sattin, D., Raggi, A.
• Format: Journal Article
• Language: English
• Published: Oxford Blackwell Publishing Ltd 01-01-2013; Blackwell
• Subjects: Adaptation, Psychological; Adult; Aged; Analysis of Variance; Anxiety; Biological and medical sciences; burden; caregivers; Caregivers - psychology; Consciousness; Depression; Depression - diagnosis; Depression - epidemiology; Depression - etiology; Female; Human viral diseases; Humans; Infectious diseases; Inventories; Male; Medical sciences; Mental disorders; Middle Aged; Minimally Conscious State; Neurology; Persistent Vegetative State - nursing; Psychiatric Status Rating Scales; Retrospective Studies; Statistics, Nonparametric; Stress, Psychological - epidemiology; Stress, Psychological - etiology; Surveys and Questionnaires; Time Factors; Vegetative State; Viral diseases; Viral diseases of the nervous system; Coma; Mood disorder; Human; Affect affectivity; Nervous system diseases; Consciousness impairment; Depression; Vegetative state; burden; caregivers; Minimally Conscious State; Anxiety; Neurological disorder
• ISSN: 0001-6314; 1600-0404
• DOI: 10.1111/j.1600-0404.2012.01666.x

ObjectivesTo assess differences in the burden of caregivers of patients in Vegetative state (VS) and minimally conscious state (MCS).
Materials and methods
The Family Strain Questionnaire, Coping Orientations to Problem Experiences, Caregiver Needs Assessment, Short Form‐12, Beck Depression Inventory and State‐Trait Anxiety Inventory were used. Differences in psychological condition between caregivers of VS and MCS patients, with different disease duration and hosting facility were assessed with Kruskall–Wallis test and factors associated with the overall levels of burden with UNIANOVA.
Results
In total, 487 participants were enrolled. Daily hours of care‐giving is significantly associated with the overall level of burden perceived by caregivers (F = 4.099; P = 0.018). Strain, needs and frequency of use of coping strategies are substantially similar regardless of the patient's condition and distance from the acute event. Caregivers of post‐acute patients reported low scores in mental health (median = 33.8; IQR = 23.1–47.6) and higher state of anxiety (median = 54; IQR = 45–62), whereas caregivers of long‐term patients expressed more needs in social involvement (median = 19; IQR = 15–22).
ConclusionsBurden and distress were high for all caregivers of VS and MCS patients. As care‐giving is a long‐term commitment process, support to the caregiver should be guaranteed throughout the duration of the relative's disease despite the patient's diagnosis or place where the patient is hosted.