title: Caregiving for patients in vegetative and minimally conscious states: perceived burden as a mediator in caregivers' expression of needs and symptoms of depression and anxiety.
abstract: Involvement of family members is crucial to provide daily informal caring to patients in vegetative state and minimally conscious state. Previous studies showed that perceived burden is a risk factor for informal caregivers as it increases psychophysical distress. This research further investigated the relationship between these factors and aimed at providing a model that thoroughly describes this mechanism of functioning. In the frame of a national survey on people with disorders of consciousness, 487 informal caregivers of children and adult patients in vegetative and minimally conscious state were administered measures of depression, anxiety, caregiver needs, and family strain. Regression models proposed by Baron and Kenny and the Sobel test were adopted to investigate the relationship between depressive and anxiety symptoms, perceived burden and needs expressed. Our study shows that the relation between those symptoms and needs is mediated by burden, where higher burden accentuates and lower burden mitigates the needs expressed by caregivers. Our findings demonstrate that psychosocial components of the burden perceived by caregivers of patients with disorders of consciousness play a key role in shaping those caregivers' needs, especially their needs for information and communication. We recommend implementation of comprehensive steps to meet the needs of these caregivers, steps that incorporate improved economic and public health programs, social support, and use of psychological interventions to ameliorate caregivers' psychological distress and decrease their burden.
authors.affiliation: Neurology, Public Health and Disability Unit, Scientific Directorate, Neurological Institute Carlo Besta IRCCS Foundation, Via Celoria 11, 20133, Milan, Italy, marco.pagani@istituto-besta.it.
authors.forename: M
authors.initials: M
authors.lastname: Pagani
authors.forename: A M
authors.initials: AM
authors.lastname: Giovannetti
authors.forename: V
authors.initials: V
authors.lastname: Covelli
authors.forename: D
authors.initials: D
authors.lastname: Sattin
authors.forename: M
authors.initials: M
authors.lastname: Leonardi
mesh_terms: D000223:Adaptation, Psychological; D001007:Anxiety / Q000523:psychology*; D001294:Attitude to Health; D017028:Caregivers / Q000523:psychology*; D017281:Cost of Illness; D003430:Cross-Sectional Studies; D003863:Depression / Q000523:psychology*; D005190:Family / Q000523:psychology; D005260:Female; D006301:Health Services Needs and Demand; D006801:Humans; D007558:Italy; D008297:Male; D008875:Middle Aged; D018458:Persistent Vegetative State / Q000523:psychology*; D012944:Social Support; D013315:Stress, Psychological / Q000523:psychology; D011795:Surveys and Questionnaires